Grace Unhinged

Business side of motherhood

2012-02-01T13:20:00.000-08:00

It's been a busy week. Too busy. And the week before was a tad bit too much also. I'm not complaining, I love that I have been blessed with a job that is a little flexible in it's hours so I can still prioritize my mommy role a bit during the day and throughout the week. I'm thankful all four kids are physically active! And enjoy all their extracurriculur activities. Family life just sometimes has a lot of business type stuff like scheduling and planning and those pesky finances to work out.

But the pace of life lately has bitten this mommy in the bum.

So I have changed up a few things to get ME self care somewhere back into the week.

I started attending an Al-Anon meeting six minutes from my home. Instead of the one hour round trip that it use it be. And you know what? The group is actually just as good and active and helpful. And it's funny who and how God places people in your path... but I think I'm going to ask a very nice women there to be my sponsor. And I can't tell how, or why, or who... because that's the whole anonymity behind Al-Anon, but my sponsor has been someone I've admired for years. And that just blows me away that sometimes you don't need to go far to have your needs met.

I've also ordered fabric and started sewing a quilt for my nephew Kyle and his gorgeous and sweet bride Keeley (okay they have been married over a year).... I love sewing and quilting so this will be great self care to be able to do a hobby again.

Maybe I'll give you the rundown on our family from youngest to oldest.

Liam continues to enjoy Awana's, speech therapy, preschool, children's church and loves the activity center at our gym. So I'm not sure much will change with his weekly activities. We would love to add a springtime sport or swim lessons, but need to see how either fits into our family life. He continues to blossom while staying so sweet and gentle.

Tommy is still nonverbal and "tolerates" his speech therapy, loves preschool, loves children's church and just about 'runs' the activity center at our gym when he is there. I really want to add a springtime activity to his life where he could learn to follow directions a bit more while associated to playing ball which he loves. So I was thinking of basketball or soccer. I head to Children's Monday for surgery for him where they will place another set of ear tubes. No biggie. But he just has such a hard time waking up from the anesthesia that I'm fairly certain it will be an overnight stay. He continues to be a bundle of energy!

Nate is in full training mode for the Lavaman which is an olympic length triatholon on April 1 in Kona, HI. Him and his dad have been so dedicated to their training! He is attending our local community college while being a junior in high school, fingers crossed he graduates next year with an AA and HS diploma. I've really enjoyed Nate's sense of humor lately, all of his pranks have created such a light and fun mood. Nate is an excellent brother to all three of his siblings.... but him and Liam are inseperable often. Nate is just plain a wonderful human.

And last but not least is Hannah, the oldest of my four and still my baby girl. We watched her at gymnastics last night and I was smiling when she accomplished two skills she has been working on. She accepted an offer to attend WWU this fall which her dad and I are happy (it's our alma matter). She is very bravely still walking the path of sobriety and is now five months sober. If you ask her, she will openly share that each day is hard (her terms would include a swear word probably, ha ha). She works her program everyday and weekly attends AA meetings plus two different types of mental health therapy. Hannah has become a very honest, beautiful, intelligent young women who has identified her weaknesses thru God's amazing grace at a very young age. She tries everyday to be strong and not ever let labels define her. She continues to amaze me. And although our relationship has been tested so often (and I mean often!!), we continue to have weekly coffee together, devotions on occasion and text and talk throughout the day. She is my closest child to being an adult... exactly 16 days if you call turning 18 becoming an adult (I define it many more character trait ways, but 18 yrs old is a big deal). Hannah will graduate in June from high school and still works part time.

Last but not least is my hubby Colin and I. We got away for four days/three nights which is the first time in a few years to the Okanagon with five other couples. First night though was by ourselves in Leavenworth and that was a fun town and we enjoyed ourselves. We have big dreams for our small farm this year that includes our 5,000 sq ft garden, hard goat cheeses, two turkeys, new chickens and perhaps a pair of beef steer. We love to dream about our little hobby farm. In reality it's like pop up kleenex though of projects where one is always after the other. Colin and I have prioritized "date nights" but so far.... it's been words and hopefully we will see some on our calendar soon.

We hope that all of you are doing well, thought you might appreciate an update from the quietness of me.

Woodland Park Zoo

2012-01-21T12:46:00.000-08:00

We've been going to Children's Hospital in Seattle a little bit more lately.

So I thought what better way to spend some birthday/Christmas cash gifts for the boys than a Zoo membership!

It took us twenty minutes from Children's to get to the zoo.

And that included the beloved chicken mcnugget run!!

Since I was by myself and had the sit/stand stroller, I decided to put Tommy's harness on and let him walk about a bit. Also, the zoo was fairly empty, so I thought if he had a meltdown OR a super fast run away moment.... I wouldn't be stared at by too many. ha ha!

We loved the trail of vines and looking at all the primates. The winter months are EXCELLENT to see animals as many are napping in hay piles right near the glass!

Here are the boys and I next to the elephants, there is both an african and an indian elephant behind us. Very cool!

Tommy found his beloved meerkats. Adorable and FAST just like him!!

These are gray owls. They were HUGE. My sister Debbie was sharing some facts on owls with me one evening when one probably snuck away with her chicken. I had no idea how HUGE they were.

We'll be back to Children's in January for PASS clinic and then in February for ear tubes plus a sedated echo for cardiology.... and then a break till April for a sedated BAER hearing test. And guess what? That means a visit to the zoo is going to be a popular treat for us after the yukky hospital.

Winter wonderland

2012-01-21T12:36:00.000-08:00

Winter finally arrived to Ferndale.

We had a total snow fall of around 14 inches

And the boys really enjoyed it!

Somehow snow always makes things beautiful!

Grandma Dorothy came to our home and took over the reins of kids and household for four days... which meant Colin and I took off for four days (first time in probably six years).

First night in Leavenworth and then the next two nights we stayed in a small town called Conconully with five other couples renting out a home there. Very fun to be with friends!

Grandma Dorothy is a blessing to us in so many ways. She is a daily educator in a very soft way to all the kids, Colin and I. She encourages us and we always have great conversations about life. We love you Grandma Dor-tea! At dinner while praying, Liam said he was grateful that Grandma let him crawl in bed with her and snuggle while we were gone. Too sweet!

I thought everyone would enjoy the boys school pictures. Not sure if I've posted them yet on here.

And a picture of Hannah and me out for coffee chat at least once a week. Just us.

And my cute niece Madison.

The boys have loved the library.

A silly picture with Grandma Sue.

The week in review

2012-01-08T20:23:00.000-08:00

Hard to believe the first week of 2012 is done. Where does the time go so quickly?

I'm going to try to blog once a week if not more often. I absolutely love sharing our family joys and trials, but it seems like time is so precious I don't blog as often as I would love to. But I absolutely love the encouragement and sharing that I get with other mommy bloggers and friends.

So here is our week in review.

Monday we enjoyed playing at our neighbor Mitchell's house. Liam and Mitchell dressed up and really had fun together. So I got a chance to visit with my friend Tiffany and dream about gardening and farming changes coming up this spring. Tiffany homeschools her kids and is always busy, so this was a nice treat to visit.

Wednesday is our Awana evening for Liam and I. We go to a church that we don't attend for their wonderful program. Nate babysat Tommy until Colin got home from work late which was wonderful not to have to watch my gypsy wandering (and non verbal) child and just concentrate on Liam. The Awana teachers are amazing and surprised the kids with a "snow ball fight" with styrofoam peanuts. I really enjoy helping the kids with their crafts and practicing their bible verses. Such a sweet program and Liam really enjoys it.

Nate and Hannah started back to school at Whatcom (they do Running Start) Community college on Wednesday. Nate made my lunch while he was making his own. And when I got to work I had to laugh because he labeled EVERY single ziplock baggy with my name. So cute!

On Saturday we went to a very fun birthday party for my 6 year old nephew Andrew down in Monroe. It was a swimming party and Colin and I had fun swimming with the twins. And it was very apparent we need more swim lessons!

After the party, and since we were in Monroe, we knew my mom was sick (with a bad head cold) and my parents would probably love some help with chores and a homemade meal so we ran thru a grocery store and then stopped by. I made lasagna and Liam and i picked up all the pruning sticks my dad (89 years young) had just finished doing. What a fun day to spend with both my sister and her son plus my parents.

Today started off not so great. I had planned to return to attend church at our 'old' church which I miss so much but woke to a flat tire on the van. And I mean FLAT tire. So Colin was busy replacing the tire but not in time for church. Bummer. Unloaded the twins and changed my plans for the day. I did have plans to meet Hannah for coffee and help her on her senior culminating project, a high school requirement, which she is doing for Down syndrome outreach. Since she is staying at her dad's house mostly, I really treasure the time that I see her. She is doing great with recovery but relationships are still stressful so our time together is usually stressful for her and I'm so sorry for those feelings. Although she cancelled our coffee, she and her boyfriend Brandon came over for dinner (spaghetti and caesar salad plus apple dumpling desserts) and a rouing game of monopoly.

The boys having fun with their sister while she had time to play with them.

Brandon and Liam as monopoly parteners

I forget what day this was taken on but I just love the way God can paint a sky!

Tommy and Liam really get into their mini air hockey table fun!

Lots going on this week to look forward too. I'm having a small procedure on Monday (and kinda anxious so I would appreciate prayers for comfort and peace), Tuesday we will be in Seattle all day at Children's and then me and Colin have a surprise planned (shhh, he turns 50!!)

2011 in review

2012-01-05T17:18:00.000-08:00

Happy New Year! It's hard to believe it's 2012, that date just sounds odd to me and hopefully the newness will wear off on it. I thought it would be fun to look back on 2011 in review and see all our family has done, grown, seen, and been encouraged by.

The year started off with potty training Liam which was a huge success for not only him but sure did lessen the load for twin diapers. Colin had knee surgery also at the beginning of the year to remove a small cyst from under his knee cap so he was home recovering for many weeks. We enjoyed meeting more families with kiddos with Down syndrome at the Spring Fling and Buddy Walk and many park events, so much fun and so many new friends!

We started "Operation G-tube wean" with Tommy in the spring of 2011 and that ended on 10/5/11 with successfully taking the Gtube out while at home one day and his stoma has healed so nicely on it's own. He is sipping from sippy cups and eating orally. Oh what a blessing that has been.

All six of us enjoyed talking at a Grange in the summer time about what it means to have a family member with Down syndrome and what a wonderful lifetime Tommy has.

August was busy with a two week vacation to Montana for all six of us. Followed by a month for Hannah being admitted inpatient to a youth alcohol treatment facility. We are so happy to support her recovery and watch as she walks courageously on in that battle.

September the teenagers returned to Running Start which is college classes at our community college so that they can receive some college credit along with their high school diploma. Hannah enjoyed cheerleading for basketball and Nate has been training with his dad to compete in an Olympic distance triatholon in Kona, HI in April 2012.

Thanksgiving and Christmas were wonderful family times and I'll post pictures soon as I'm catching up on blogging. What a great year 2011 was and we really appreciated YOUR encouragement and prayers.

I "heart" Tommy

2011-11-15T07:50:00.001-08:00

Very early after Tommy's birth, we were approached by staff to participate in research studies at Seattle Children's in a voluntary effort to hopefully better understand and diagnose some of the medical struggles that Tommy endures. You can type the word "research" into our blog's upper right hand search field and see what studies we are involved with.

We've never sought out research studies. All are voluntary. As Tommy's parents, we only ask that blood draws be collected with other normally scheduled blood draws so he has no additional pain or discomfort.

Tommy can't say if he wants to be involved with this research, but after talking to family and friends and prayers, we felt that Tommy would want other kids with Down syndrome to have better medical procedures and science behind care.

So recently we were recontacted by a study for AV Canal defects. The Genetic Association Study for Copy Number Variation and Endocardial Cushion Defects. The researchs at Seattle Children's want to learn more about the genetic cause of the AV Canal defect. They want to find why some children are born with this heart problem. It might be a genetic factor. No research has yet asked and answered this question for Endocardial Cushion Defect.

We believe God made Tommy perfectly. That part is easy for us to understand. We can look at any of our kids and see God's work at hand in each of them as a gift.

So, it's hard to describe, but we also believe God wants the doctors to have their best talent and knowledge to care for his medical needs. We wouldn't change Down syndrome. But we would want to help alleviate the pain from Hirschsprung's Disease, open heart surgery and the ongoing immune deficiency of Polysaccaride Antibody Deficiency.

For this specific AV Canal defect study, Colin and I both gave saliva samples years ago. And Tommy had given saliva also, but this time they needed to collect a blood sample which would be permanently stored for data. They sent a 'kit' blood draw to our Pediatrician and we went to one of the very few kit blood draw labs in our county. This blood draw was coordinated with an annual blood draw that our Pediatrician also wanted to recheck thyroid and cbc, etc.

The kit was then driven by us to the airport and given to those nice Fedex folks to fly back to Children's. Tommy is one of 300 people with Down syndrome or a heart defect or in Tommy's case both, in the study! We hope this study is successful in it's goals and produces new knowledge in this heart defect.

Buddy Walk 2011

2011-11-04T14:02:00.000-07:00

Thank you to our family and friends for supporting another year of Down syndrome Outreach and the Buddy Walk 2011. Oh how we had fun!!

Sharing da' love

2011-11-04T07:47:00.000-07:00

I visited a new family with a very tiny and cute baby that happened to be born with Ds.

For the past few years I've volunteered for Parent to Parent and Down syndrome Outreach of Whatcom County. And for the past few years I've had the absolute pleasure of meeting new families.

Well over a dozen in the past twelve months alone. Some new to Whatcom county. Some with newborns born here. Beautiful families with the most beautiful babies.

I feel kind of selfish about this volunteering though. See, I get so much more out of it then I think the families that I meet do. Hearing their experiences, meeting their beautiful babies and helping them with any questions, means so much to me. I feel like I get so much more out of our friendships and sharing our similar paths than the new families get out of me.

But this meeting with the family was a bit different.

Baby was sick and being carefully cared for in the hospital by his amazing mommy. It was different too because I brought my daughter Hannah with me.

See, her "culminating senior high school project" is on social support systems for families with a child with Down syndrome. And the effect that has on families. We were between a series of appointments for Hannah and I had taken a half day from work for all those medical appts. But we had a few minutes to swing by the Arc and pick up the "New Parent Bag" full of Ds books, calendars, blanky and hat. Then up to meet this gorgeous new baby and tell the parents congratulations.

Hannah learned a bit about sharing your heart with another family.

Volunteering.

How a servant's heart is always refilled and overflowing.

My heart is many miles away

2011-10-31T17:22:00.000-07:00

It's no secret that I'm in love with a few babies in orphanages in the Ukraine and Russia. I see their faces on Reece's Rainbow, fall in love with the shape of their eyes and melt into those pictures. Knowing their hearts and bodies are trapped in a place of no love. Knowing the joy and blessing of raising our son with Down syndrome and not understanding why so many are orphans.

I pray for orphans daily. Praying for comfort when they feel lonely. Praying for food to appear when they are hungry. Praying for someone to walk by their crib and pick up that child and love on them.

But praying is only one way I'm going to help them.

After reading this mom's wonderful story of adoption: http://www.nogreaterjoymom.com/2011/10/three-moms-with-six-angels.html It's even heavier on my heart to help.

So I'm sending Reece's rainbow a message that I'd like to raise money this Christmas season for this boy:
http://reecesrainbow.org/4106/nicholas-25ha in hopes that perhaps a family will find him and the monies raised will ease their way to adopt him. I stare at his sweet face daily and pray for him.

See at his age he will soon be transferred to an insane asylum where he will not make it much longer fending for food and probably fighting off other people. What a sweet chubby cheeked boy who should be playing in the yard with rocks and finding snakes or snuggled up on mommy's lap reading a bedtime book and being asked if he has brushed his teeth yet.

I'll put a linky up soon if you would like to send something his way at Reece's rainbow.

A new shopping experience

2011-10-16T14:39:00.000-07:00

So this post is totally about me.

And being cheap.

So, you've got to be interested in both of those topics right?

I was at Fred Meyers yesterday looking at a new pair of shoes that I could wear to work. Kinda dressy meets casual. This was a definate 'need' for me. I work in accounting so my feet aren't really seen by many, but my current few pairs were looking pretty sad. And my favorite pair had a hole in it, not cool. So I found a pair for about $40. They weren't really anything exciting, a suede pair of clog like keds that looked fairly nice. I was pressed for time and needed to go pick Hannah up for work so I thought I would "think about the purchase" and passed on buying them that moment.

Hannah said she had two hours to spend with me in between her work meeting and her actual shift at the DQ. So off we went to Value Village. Our VV is in a new spot and HUGE. We had plenty of time to find that pair of shoes there, right? Well, I did spend the $40, actually almost a dollar less than what that single pair of shoes was going to cost and I purchased:

A pair of black naturalizer shoes that look adorable and fit great, no 'wear' on them
Pair of brown soft cotton pants that kinda look like dressy colored jeans
Floral top that is so cute, blue
Yellow stretch shirt with three quarter arm length (I'll wear a camisole or sweater shell under)
Pair of khaki pants for Liam
Blue polor shirt for Liam
Yoga capri pants for me (gym bag is already in van for week)
Boardgame for Liam and I (trouble, teaches colors/counting/ turn taking) no pieces missing

I was giggling to myself that the purchase went so much better. Value Village is a definate for my next purchase needs. You really need an allotment of time though if you go. Snooping thru racks and trying lots of clothes on is a must.

Next stop was the Christian bookstore to get Hannah a new devotional and I was excited that she found two that met her interests. So at the checkout I mentioned that I had their recent coupons in my email, but forgot to print the coupons (and they are 25% off good ones). They asked for the codes off my email, which I found thru my phone, and wa-lah we got he whole purchase for $13. Two great books for daily inspiration and a walk closer to God for an affordable price.

Renewal

2011-10-16T14:25:00.000-07:00

Our family has always felt that a closeness to God didn't necessarily mean church attendance. Daily devotions and prayer happen anywhere. Yesterday Hannah read the daily devotion in our van while I was driving and we discussed. But worship, obviously, is best in fellowship with many people. But for awhile we have struggled because Tommy's needs and Hannah's interests weren't really being supported in the a way that we felt drew them closest to God while at church. Sparked them. Showed God's love in every action. So today we visited another church with a friend. The children's church program had many, many kids with Down syndrome in it which was an eye opener and made my heart feel so good. Plus there were kids with all types of special needs receiving accomodations so they could learn the word of God easier. The sermon that Hannah, our friend and I attended was amazing. It. blew. me. away. The sermon was on guilt. And how we carry it around as baggage and it distances us from friends, spouses and God. The pastor mentioned AA support for sobriety and the fifth step and talked about topics that hit so close to home. Don't get me wrong though, our pastor at our church is amazing also and our family has such a connection with him. It's just all the other pieces of hearing God's messages weren't really reaching a few of us so we wanted to try something new.

The only drawback to the new church was that they lost Tommy. Literally. They have a fancy huge tracking system for kids, tags, electronic tracking and all. But they lost him. I checked Liam and Tommy into a preschool room, talked to the teachers and explained Tommy is a nonverbal gypsy runner. They felt confident they could watch Tommy and met his needs. I was 'encouraged' to attend the sermon. Read that asked to leave and had hovered a bit too long, ha ha.

After service, I told Hannah and her friend, we've gotta make a bee-line back to the children's room thru all the hundreds (thousand?) of church goers to grab the boys. When I got to the room I had dropped them off in, there was a mom who said they were across the hall in a larger group to eat and worship. My stomach fell. I just knew Tommy would be lost in the shuffle. And sure enough with two exits to that room and all the kids, plus teachers, plus parents coming and going. No. Tommy. None. Glanced around the room and saw Liam playing but no Tommy. Asked both teachers and each one pointed to the same area of the room, that's where we last saw him. Hannah and I have a "glance" that means, you grab the kid you got and I'll run for the other twin. And I ran. Pushing past people and heading to the front of this new church to what I remembered with the glass doors that led to the parking lot. Dry heaving. Tears and all. Geez, I'm such a crier. And there, which seemed like 5 mins to get to it. Was a dad standing with a VICE grip on Tommy and a smile on his face. I just knew this lil guy needed someone and all his darting around meant he was looking. Heavy sigh. Tommy was fine. Marched Tommy back to the preschool room where he showed some glimmer of remorse (hands over his face) and told the teachers I had found him at the front of the church. Out of nowhere came another teacher who said she worked with special needs kids for the church and welcomed us to come to a different service where his needs could be more better addressed. ugh. That sounded great. Now I'm getting a gps system even quicker than I've ever said before.

So. All four kids, plus two teen friends and us are going to pick apples and make caramel apples this afternoon. And I'm going to soak up the fun and sunshine and remember that God is good. All our needs are met, and a few of our wants, and this is such a perfect day.

Down syndrome awareness month

2011-09-29T18:43:00.000-07:00

Since October is Down syndrome awareness month I thought I would repost the video we made last year of Tommy's growth and abilities. He continues to grow and change everyday in the most amazing ways.
http://tommyupdate.blogspot.com/2010/09/tommy-story-at-onetruemediacom.html

Also attached here is a video from someone else's blog (whom I adore) of her two munchkins. Be sure to read her 'back story' on her blog.
http://pudgeandzippy.blogspot.com/2011/09/appropriate.html

To everyone that already knows how wonderful EVERY human life is, thanks! And to those of you still learning of Down syndrome, ask questions I'm right here!

Buddy Walk time!

2011-09-20T12:15:00.000-07:00

Join Tommy at this year's Down syndrome Buddy Walk in Bellingham on Saturday October 1. Have fun while helping fund programs for people with Down syndrome.

http://www.arcwhatcom.org/BuddyWalk.html

Heavy heart

2011-08-25T16:26:00.000-07:00

It's hard to watch your children struggle.

Being a mom for over 17 years now I've watched all four of my kids struggle at times.

Sometimes it's a struggle acquiring a new skill. Hannah learning horse back riding, Nate long distance bicycling and falling sometimes in dangerous scary ways, Tommy struggling with simply orally drinking, Liam struggled to ride a bike.

All of them struggled for awhile, but their will, their persistance, their hearts and faith led them to success and they were able to acheive what they originally set out to do.

I needed to, often, step in to help for a bit, but then step away. They learned best with my support but by themselves.

On Sunday I left my struggling daughter at a place that is suppose to try and help her. To find a cure for the disease that has begun to consume her. Hannah is in the beginning stages of alcoholism. A disease, although genetic and hereditary, is a choice of the heart and the staff will support her in learning to beat this struggle, but in the end, all of us will step aside as Hannah learns to stand alone and beat this.

Forever, Hannah will be faced with her disease. Forever, she and our family will be changed. We are choosing hope. We are placing our worries and anxieties about the process in a God that loves Hannah more than anyone else.

Hannah is trying her best. But would love prayers! Specifically about learning how to choose her own lifetime over alcohol. I'll see her on Saturday and any posts here or on facebook, I'll give to her in a card. Much love to all of you!

Montana 2011

2011-08-15T21:48:00.000-07:00

Caution

Picture overload!

Here is the highlights of our Montana 2011 family vacation

I won't subtitle anything, but in general we had the six of our family, plus two extra WONDERFUL teenage friends

Plus two cousins

A wonderful uncle Marty and his girlfriend Jenny

A sweet Grandma and a wonderful uncle Bruce

Almost ten full days of 80-85 degree weather

Lots of wakeboarding, waterskiing, kneeboarding by Nate

Major soul searching event for all of us

Two fun loving four year old twins who were constant energy

Hannah enjoying all things sunshine related

A cabin which holds 10 years of our small family's memories and summer adventures and over 40 years for my husband!

Colin and I appreciating God's beautiful creations both in nature and in our four kids

Family vacation to Montana

2011-08-09T07:47:00.000-07:00

Soon you will see too many pictures of our trip to Montana.

Trust me, you will be tired of sunshine, waterskiing, bonfires, teenagers, yummy dinners, five empty bottles of sunscreen (seriously), aqua shoes, fresh coffee beside the lake watching the sunrise, live theatre in Big Fork, buffalo burgers, carrot sticks with hummus, kicking soccer balls with the twins, long conversations about meaningful life events, naked twins running wild, late night movies to escape mosquitos, big sky sunsets and stargazing for hours.

Okay, you won't be TIRED, you will want to go to Montana.

Stay tuned!

Improving Care for Children with Complex Needs

2011-07-22T15:31:00.000-07:00

So, awhile back I told you Tommy and I were selected to be in a pilot study at our local Children's Hospital to help improve care for children with complex needs.

And I was really excited.

And as I was sending back all the signed forms and consents, and after I told Tommy about it, I was secretly hoping we would be randomized into the intervention group.

Not the control group. Because nothing fun happens in the control group.

And so I was tickled when I opened my email today and received word from the pilot study folks at Children's:

Dear Ms. McMillan,

Welcome to the Improving Care for Children with Complex Needs study! Thank you for returning your completed consent and enrollment materials to us.

You and your child’s primary care provider, Dr. Mara Kelley, have been assigned to the intervention group, which means that you will participate in the Comprehensive Case Management Service (CCMS) program at Seattle Children’s Hospital.

Within the next week, a scheduler from Seattle Children’s will call you to schedule your first CCMS clinic visit. After your child’s visit is scheduled, a member of the CCMS Clinic Team will call you to gather some information about you and your child prior to your first clinic visit and will answer any questions that you might have about the program. At your child’s first visit, the CCMS team of doctors, nurses, and case managers will work with you to create a shared care plan for your child.

Woo Hoot! We are in the intervention group and will receive the comprehensive shared care planning we have always hoped and prayed for.... the same planning that is lacking here in our county.

Since I'm involved in our local Taking Action Group for Strenthening Services to children with special healthcare needs in Whatcom County, I've kept them in the loop of this pilot too. Who knows, maybe when Seattle Children's is working with our local pediatrician and immunologist... good things will start to happen and improve locally.

Prepare yourself Tommy. This means being treated to FAO schwartz toys while in Seattle, Chinese food, and lots of your favorite ice cream cones as reward. You can do it!! Your mommy loves you enough to want to improve care for all kids with complex needs. This will be fun.

G-tube

2011-07-21T18:44:00.000-07:00

Tommy's g-tube fell out today while he was playing with Liam.

I was at work, and our sweet babysitter called to say she found his mickey tube on the floor. Oops. By the time I got home, a 30 min drive, I tried to put it back in, but within a short time the stoma had already started to close.

Now if you remember, last time this happened it was a weekend and our local ER couldn't really help us and we ended up driving to Seattle Children's to have it reinserted.

So I hesitantly called our pediatrician for advice, thinking it's a weekday and things might be better for local services. They had us go to the hospital admitting and then to the pediatric floor to meet our prior pediatrician who is now a hospitalist. We adore him. Tommy absolutely loves that man. And the feeling is mutual I think.

So when we get to the pediatric floor, of course all the nurses have to catch up on "all things Tommy" since they haven't seen us inpatient in well over a year now. That was at 2pm. We were told the dr had been paged and he already knew we were coming to meet him because our pediatrician called him for this service. We waited for the doc. And then it was 3pm. We were still waiting for the doc. And then it was 4pm. We still...were...waiting...for..the... doc.

And the room we were in started getting small. Tommy was tired of me.

And Tommy and I smelled liked vomit. Because when your g-tube comes out and your mom can't get the new one in.... she puts a red catheter in the stoma. Which leaks. It leaks stomach "stuff" out. And oh my goodness does it stink. To hold the red catheter in place while driving to the hospital, mom has wrapped a towel around your body and then packaging tape around the towel. Because the stomach "stuff" has made it difficult to tape the catheter to your body. And you stink. And your mom stinks. In fact she dry-heaved a few times. Which is about the ugliest thing a human being can do.

So it's 4pm. And it's been two hours waiting for the doctor. So I decide to take Tommy for a walk because he has decided in his boredom that his towel and packaging tape should come out. They should be ripped off. Now. And his toes, feet, hands all got involved in that effort with great immediacy.

On the walk I look down at my flip flop feet with newly painted pink toes to see stomach "stuff" all over my toes. Not much I can do about that at this point. But dry-heave again.

So we walk and look at the koi fish in the pond. And we walk thru a parking lot to get some fresh air. And then another and another.

I cruised thru the cafeteria on our way back to the pedatric unit and bought Tommy his favorite tapioca dessert as a "prize" for after he got his g-tube reinserted.

And now we are at the THREE hour wait. And then the nurse came to find us and the doctor had arrived. It's not much fun for Tommy waiting three hours looking like a sumo wrestler with a towel around your stomach, smelling like a bum and being wrapped in packaging tape is just really odd.

Of course two nurses helped plus the doctor and two lpn's asked if they could watch and learn. Right about the time I'm telling the doc that I've tried the new gtube and there are no holes in it and it takes 5 cc water.... his pager goes off. With a c-section possibility. I have to admit, for one second I thought in my head, oh please just help my son first then go to the c-section. I knew Tommy's would be quick.... and then he said the c-section was a few minutes off so he could help Tommy first. I feel really bad for thinking those thoughts now.

The procedure took all of 5 minutes as the red catheter had stretched the stoma enough for the g-tube to be slipped back in.

Tommy high fived the doc and the nurses and we took our stinky selves home. Right after he ate his tapioca in front of them. He had waited way too long not to eat that prize!

So, tomorrow we had a prescheduled meeting with our nutritionist and will definately work on the g-tube weaning plan we started a few months ago. Tommy is ready. And so am I :)

Grange hall talk

2011-07-20T14:19:00.000-07:00

We've been keeping busy lately. Our family was invited to talk at the Snohomish County Grange meeting and thank their women's comittee for making blankets for new babies born with Down syndrome in Whatcom County. My parents are in Snohomish County which made this connection great. So we drove down to Granville grange in Granite Falls and met with the folks there to talk about Down syndrome awareness, support and to say thanks for the blankets!

I thought to share my speaking notes with all of you as a way to update what our local DsO is doing. Each DsO is a bit different in outreach, New Parent support and activities for everyone. And I love reading on blogs what each of you are doing within your local area support systems. So I'll share my speech with all of you. The questions that followed the speech were interesting, most people seemed to want to know what types of Ds there are, and to mention how their own family member with Ds lived a full rich life. It was a wonderful day and really enjoyed having my family there to support Tommy and people with Down syndrome in general. Hannah has chosen her culminating senior High School project to be on family support systems for people with Down syndrome. So I'm sure her speech will be a highlight next June!

Speaking notes from July 16:
I’d like to thank you so much for the invitation to come today to talk. Thank you to Jan, The Horseshoe Grange, and all the women who made the blankets for newborns with Down syndrome. What a terrific project and we are so thankful.

First I’d like to introduce myself, I’m Sandi McMillan, married to Colin, mom to four active kids (age 17 down to 4 ½), daughter to Bill and Sue Pepperell and a sister to Debbie and Tami. I’m a mom first, farmer by choice and accountant by day. To tell you a little of our story, our last two children are twins born the twelfth day of the twelfth month and 12 minutes apart! We did have a prenatal diagnosis for probable Down syndrome but soon learned after Tommy was born that he had multiple diagnosis and needed immediate medical interventions. He was born with Hirschsprung’s disease and required surgery to remove 1/3 of his colin. He also was born with a complete AV canal heart defect and required open heart surgery at 6 months old. Tommy has a g-tube which is a feeding tube in his tummy for thin liquids. He also is moderately immune compromised with a condition called Polysaccaride Deficiency Syndrome.

Since Tommy’s birth, my husband Colin and our teenagers, have been volunteers and advocates for people with Down syndrome. We began volunteering at “Down syndrome Outreach of Whatcom County” in 2007 by fundraising in our first Buddy Walk which is the nationally known fundraising walk for local areas to raise awareness for Down syndrome. We quickly turned the interest in advocacy into hundreds of hours volunteering over the past four years serving in our DsO.

One of the first projects in our DsO was to create a brochure for newly diagnosed parents, so there could be accurate information given to new parents. We learned that most new parents didn’t have a prenatal diagnosis and no time to prepare by looking for facts. We met with the manager at our local labor and delivery and hand delivered our factual brochures and explained the DsO services for outreach to new parents.

The brochure highlighted facts such as 350,000 people in the US have Ds, it’s the single most common genetic disorder. About 80% of children with Ds are born to moms under the age of 35. All people with Down syndrome have some level of intellectual disability, which can be mild to severe. Most are somewhere in between. Children with Down syndrome look more like their families than they do one another. They have a beautiful full range of emotions, attitudes, are creative and imaginative in play and pranks and grow up to live independent lives with varying levels of support.

Down syndrome will not be the most interesting thing about Tommy as he grows up. Remember we share much in common with you as a parent, raising children fills your life with unimaginable delights and difficulties.

Today, people with Down syndrome are achieving advances in healthcare and increased opportunities in education. With support, many move out of the family home, take care of themselves, hold jobs and live full rich lives.

We thought the brochure was great, but wanted to give parents more than just a piece of paper to read. Colin and I knew first-hand what it was like to feel supported by other families with older children with Ds when Tommy was first born. We had the great privilege of meeting the Weg, Gillig, Howard and Johnson families early and were very supported.

In wanting something more than just the brochure, we worked with our DsO to create a New Parent bag filled with resources, a blanket, a toy. Our DsO volunteers are creative and made a beautiful bag with yellow and blue colors on a butterfly as the symbol outside the bag. We found a developmental calendar at Band of Angels that allowed families to place a milestone sticker in whatever month the child achieved that success. Even if walking came at age 3 or 4. The first year of the New Parent Bags my mom Sue and my aunt Elizabeth made the majority of the blankets that went to new babies. One of the DsO volunteers Bill also donated blankets. Last year, we were grateful to the Horseshoe Grange for making beautiful blankets that were given to new babies. The blankets, as a piece of the New Parent bag, make a big impact to new families. The feel others are thinking of them and we are congratulating them on a new baby! Other items in the new parent bag include the DsO brochure, National Down syndrome brochure, Arc and P2P information.

The New parent bag is wonderful, and even better is the long lasting connection that a parent makes with a helping parent that has an older child with Ds. An instant support and resource is made between the new parent and the helping parent that delivers the bag.

Our Down syndrome Outreach, as a program of the Arc of Whatcom County, has an event each month. We would love to invite all of you to events to see how people with Down syndrome lead full and rich lives.
Again, thanks for making the blankets for DsO of Whatcom County.

Summer reading program

2011-07-07T17:06:00.000-07:00

Our local library has an *awesome* summer reading program, so I signed up all four kids. The duo is doing the 0-5yr old fun program that tracks reading books and awards fun prizes. The teens (although they don't know this yet) will be encouraged to participate in the summer program too and theirs is all online (and amazing prizes).

Summer reading is good for the brain and you can enjoy the sunshine too.

Here's the link if you are local. Even if you are in the county, the Bellingham library can still be your 'choice', they just ask that you only participate in one program (either pick county or city). The duo got two-for-one swim passes and bus vouchers (which I've wanted to take them on) just for signing up.
http://www.bellinghampubliclibrary.org/summerreading/index.aspx

Summer is finally here

2011-07-06T07:23:00.000-07:00

We are so glad warm weather is here at last. Kids are out of school, and summer trips are already in progress. Hannah leaves for cheer camp next week, Nate is finishing up driver's ed, Tommy has recovered from a gross gtube infection and Liam has learned to ride his bike without training wheels.

We are each reading a book. And relaxing alot.

I know the duo looks like they are going golfing, but actually Tommy went to the dr three times in eight days for a gtube infection. Last visit finally we got what we were asking for, a nice strong antibiotic. He is so much better now! We also called our home health care place and ordered a gtube with a longer stem, cause I got to thinking.... no one has suggested a bigger gtube since he rec'd his first one.... at 10 months old. Just thinkin' that might be part of the problem with infections.

We made Kool-Aid flavored playdough. One of the preschool summer 'homework' was OT skills of poking and especially isolating that big ol chubby index finger. So we poked playdough. And read books that are his favorite so he could point at all the monsters and excitement on the pages. He is getting there. Tommy prefers a good ol smack with the palm of his hand any day over isolating an index finger.

Liam *loved* Max's birthday party. And I love it when Liam looks like he had a really good time. Despite his brother having repeatitive fits for the entire three hours.

This is what wrestling looks like in the summer

Hannah helped us at the park playground and I think she may have had just as much fun as the boys.

This is a room full of stuff! I met with Western Washington University staff at the Ershring lending library for special education teachers. About an exciting opportunity for Tommy. I'll write more later But this place was so cool with resources and ideas and meeting Tommy just 'where' he is with communication. I'm wagging my tail with excitement.

Hannah and Nate's beautiful great grandma turned 90 this month. My sister Deb hosted a beautiful birthday party and we were treated to a 4 generation picture of Nate, Hannah, their dad Michael, Grandma Linda and Great Grandma Ilene. Hannah has her great grandma's name as her middle name. What a fun day.

Nate and I spent the day together. Packed a picinic. Went to Locust beach and as Nate puts it "chilled". It was a little cloudy. But we enjoy spending time together, especially at places hand picked by Nate which are always outdoors in nature.

Yes that is Nate up in the tree hammock that someone built over the beach. Too cool. Chillin'.

I'm trying to get the duo out a little more now that we are healthy again and having some meaningful activities. So, we visited daddy at work one day. Liam loved it! So did daddy ;)

Down syndrome outreach and Parent to Parent have put on some fun evening activities to meet more families. And of course, we have really enjoyed them!

Last year, my sister Debbie gave me some strawberry plants. I didn't think much of them after planiting. Oh my was I surprised when the 'first picking' added up to a bowl full. We have since picked twice more and I think we will get two more pickings also. Mmmm.

Daddy is trying to beat the rising diesel prices and got himself an adorable (I mean handsome) little scooter for commuting. Liam is totally jealous.

Liam riding his two wheeler. In his underwear. With mud boots that are all cracked and broken. But he is riding without training wheels. Woo hoot! Loved the goofy hat too. He has such style.

We had friends over for the fourth of July. Two lovely families. And they brought fireworks!

Daddies putting all the fireworks together. It's just a guy thing I think.

Enjoying backyard sunshine.

Liam loved watching the fireworks safely in my lap behind the french doors where we could see the fireworks.

Happy summer!

Max' birthday party

2011-06-25T09:38:00.000-07:00

We had a *blast* at our friend Max's birthday party. You can see all the cool pictures here. http://mightymaxupdate.blogspot.com/ Max's mom Amy is amazing with creative ideas and so much love and caring. We had fun!!

Mommy note: Tommy was not feeling well and SUPER grumpy grinchy grouchy. After the third dr visit last night within eight days.... we have an antibiotic and are getting better.

Happy birthday Max. We love you Sooooooo much!

School's out

2011-06-20T06:55:00.000-07:00

Gratitude: Give thanks in all things (Ephesians 5:20).

We made teacher thank you gifts this year for the preschool team.

There are 7 on the teaching team for 10 kids (I believe that was the final number in their morning classroom but I could be off by 1 child that may have snuck in June).

The preschool team was amazing this year again and I'll post later this week on progress for the duo and what we will be homeschooling on this summer (actually for all four kids,I'm so excited)

We started off with LOTS of sculpey clay and pens. Hmm, any ideas on what we made?

Hannah and the duo CREATING. And we talked about the year, thanking each of the teachers, talking about the special memories......and how we are already looking forward to next year!

We made pens for each teacher. We thought about colors and tried to match meaningful colors to each teacher. The yellow/black one was for our bus driver who is ever so patient with us. The green/yellow pen was for one of the staff who Liam said "she luves John Deere's like me". And the red/white one was for Tommy's nurse because it reminded us of the red cross. Tommy's wonderful one on one aide (although no one called her that) is staying home next year to care for her family and we made her a pen with red in it because..... Tommy signed the color red this year!!

I wrote them each a personal note. I used a template in Word for shipping labels and it had a beautiful scroll artwork on it and worked perfectly when printed on a sheet of paper and cut out.

I could have written an entire page of observations, gratitude, sharing and encouragement because each teacher has been such a gift to us this year and so absolutely fun everyday.

Thank you preschool team! See you all in the fall. Stay tuned this week for our progress updates and our homeschooling summer very flexible 'plan'.

Finally warm weather

2011-06-12T20:23:00.000-07:00

The view from my kitchen window out to our picinic table for dinner. Home raised chicken with jerk seasoning, organic quinoa, sweet potatoes and a salad.

Tommy finally stepped onto the scooter! He actually is standing in place here (I didn't think he needed a helmet), so maybe, just maybe, he might enjoy the scooter by summer end.

The garden is in. Well, I have just a couple other veggie starts to get, but it's mostly in. Thank you to my sister Tami for 26 tomato plants! To my sister Debbie for the basil and peppers. And to my parents Bill and Sue for sprouting all the seeds I ordered from Territorial this year. Thanks to my neighbor Nora for hosting the *very* best gardening club evening to choose what to plant for this area and share tips (and wine). I still planted seeds by hand for things that don't transplate. But, when you have a 5,000 square foot garden you need HELP :) I've got a great family and friends. Here's looking at putting up at least another 100 quarts this fall of vegetables. P.S. I planted 60 hills of potatoes (6 different varities). And remember, some of this is going to Bellingham Food Bank because it was my goal to donate at least 100 pounds of produce because I'm so saddened by the food bank line when I see it (it wraps around a city block).

Hannah surprised me at work with coffee and a hug. Just love my daughter!!

Glad the weather is warm and we have tons of encouragement to spend time outside. Have fun!

Wordless Wednesday - Breakfast for twins

2011-06-08T12:42:00.000-07:00

This is a month ago now, but fireside breakfast table for the duo!

Wordless weekend because I'm wiped out!

2011-06-05T20:22:00.000-07:00

No captions because I'm headed to bed, wow, I'm tired. Fun weekend though and I think all six of us are in these pictures somewhere, plus my dad, gardening, and the Scottish Games. Hope everyone enjoyed the sunshine!!

Preschool makes learning fun

2011-05-28T09:06:00.000-07:00

Here is a glimpse into the Preschool program that Tommy and Liam attend. Tommy has been slowly (ahem very slowly) learning sign language, the pecs picture system for making choices and just any form of communicaiton. So I went to preschool again to watch specifically for ways I can be more consistant at home with what they are teaching him in preschool. These teachers are so gifted with special education and the amazing unique ways to tailor education and access to education to each of these unique little people.

Tommy's aide (not officially his own aide but realistically and honestly) L is reading with him a book on colors. She signs the color for him with her right hand and often Tommy was using hand under hand to feel her signing the colors. We all share the interest in Tommy communicating something, anything, and colors seem a great place to start. He could choose "the red one" or the "orange one" to distinguish toys or blankets,etc. Hand under hand signing is Tommy's mode of learning. He "turns off" if you grab his hand to force or manipulate it into a sign. L is *so* loved by Tommy.

The morning preschool routine has a sweet circle time and part of the tasks of that opening time are for the designated child of that day to go outside and look at the weather with the binoculars and report back to the class. So cute!! So here is Tommy outside with his SLP looking at the weather with his binoculars. You can almost see in this picture he has a specialized pressure vest on. The team has been trying this to give Tommy's body a bit more sensory information (remember he is a sensory seeker and gypsy) and to satisfy those needs so he can sit still during the activities and better access his education. And it seemed to work great. Although I'm going to get a light weight one thru Spio because this one was a sauna for him and he doesn't like being warm because he falls asleep when warm. But back to the story of the weather... Tommy came back in and his SLP said and signed cloudy and rainy (gotta love the pacific northwest).

After circle time the kids are each given a colored ticket and separated and can move thru the different activities. Today there was a ratio of four of the teachers on the team to 8 kids. Each teacher/para educator had a separate activity and the kids were sent to their tables by the colored ticket they held in their hand. Tommy LOVES the snack activity. He has his specialized chair that travels to each activity with him to help support his core and legs so that he doesn't need to work to sit on the chair and can rather attend to the learning activity. MMMM. Pretzels (mommy learned the sign for pretzel and won't sign cracker for them anymore) and he gets his 4 oz of milk in his gtube at this activity.

Liam was in a different group of kids and this is his picture at the SLP's activity table working on sequencing a puzzle story and then talking about it. The activity really sparked thoughts in Liam and lots of conversations about the beginning, middle and end of the story. Mommy note, I need to go to Launching Success our local schooling store and get one of these games because it was very interactive for Liam. I tried to exclude other kids from these photos, but if you have another child in the morning preschool room, your kids are ALL so cute and it was hard for me not to hug a few of them (K your lil S is so stinkin cute we have to do a playdate soon on your new swingset).

When Tommy in his group got around to the SLP's table activity you can see how the teacher changed the fun to more appropriately meet Tommy where he is. Working on colors! And spark with his natural boy interest of BALLS! So they signed and said the color and Tommy played and played. He also had the opportunity to work his fine motor skills and separate his pointer finger to press on one of the releases of the ball machine (worked in a little OT). And, drum roll please..... he signed RED appropriately and self initiated (Tommy doesn't initiate many signs, if any). I've got a video of this and will post soon, because at 4 1/2 years old for a non verbal kid, this is a mommy's PROUD momment.

Another activity table was working on finger isolation (pointer and other fingers) with KoolAid scented playdough. I noticed here that he LOVED the sensory input of the playdough, stuck golf tees in it, pointed with his isolated finger in it and rolled and rolled. The earlier activity at this table was in relation to their week study on the VERY Hungry catepillar and they made a butterfly out of paper, clothespin and pipe cleaner. He didn't like having L's hands over his and manipulating, although L was trying her best to get him to do the activity and Tommy was so stubborn about it. I've got to remember to make more playdough for home!

After circle time and the activity tables, then there is puzzle time and book reading. Here is the chance for toileting too with the aide one on one. And then the morning is wrapped up with a very sweet circle time of learning each other's names and singing songs and more book reading.

Both of the twins LOVE wooden puzzles. So I'm going to reorganize our home school stuff so the wooden puzzles are more accessible. Too cute!

Your road will be made smooth for you by good friends

2011-05-24T21:51:00.000-07:00

I was asked to write a short article for our local parent-2-parent newsletter on a 'parent's perspective'. No theme, no question for the essay, just write on your perspective. So.... this is what I sent and thought I would share with all my virtual friends too.

At lunch today, the piece of paper in my fortune cookie said, “Your road will be made smooth for you by good friends”. Wow. I had to read it twice. The second time I co uld smile to myself and reflect on how true that statement has been for me and my family.

And although the fortune didn’t say “my road will disappear completely”, nor did it say “I would begin to happily float on a carpet ride under blue skies down the road”, I was happy to remember how much smoother this road was with good friends.

Our son Tommy has multiple diagnoses. He has Hirschsprung’s disease, Down syndrome, and has Polysaccaride antibody deficiency syndrome. With permanent pulmonary daily care and g-tube feedings for liquids, he is thriving now. He is an open heart surgery survivor and has lost nearly a third of his bowels in a pull-thru surgery. He has outgrown delayed visual maturation and hearing loss issues. He is truly a champion. His diagnoses don’t define him, as all reading this already know. We love him to pieces. His current nicknames include Nugget and Sugar Cube.

We feel his blessing to us has added a depth to our family and to each of us as individuals that is unique. So strongly bonding each of us to one another and to him. And yet we are on a road. The road of raising our son with special healthcare needs. Somedays it feels we are alone and isolated. But that’s just about the time we reach out to friends with honesty about our feelings and needs.

Nearly five years of traveling this road with my family has been difficult at times. Joyful often. And tragic to the point of our son almost dying three times. Elated with his developmental accomplishments. Scary on many occasions with medical procedures. Stressful. Bumpy. A life lived in the extremes of dark stress and sheer bright happiness.

The travels along this road have been refreshed thru friendships. The enjoyment of a dinner dropped by after a long hospital stay or a phone call to check in or an email just saying “I’m thinking of you”. Reading blogs of other families similar to ours, and the friendships that develop, either close by or far away inspires and encourages our family. And makes our road just a bit smoother. Hearing friends talk about solutions to sleep issues for children like Tommy who don’t really sleep much, or how to swim at the aquatic center with a G-tube, or hearing a friend explain for the tenth time how Hirschsprung’s disease really never is fixed. Sharing experiences, friendship thru common bonds and exchanging small pearls of wisdom make the road smooth.

Friendships include the harder conversations that good friends bring. Of “why don’t you step away and find some time to self care and reenergize?” Or, “have you called Medicaid eligibility yet”. Or “perhaps you might find some mental health help and a new set of coping skills by seeing a counselor”. All actual conversations started by my friends and the outcomes of all have made our road so much smoother.

Good friends to me, as a parent of a child with special healthcare needs, look slightly different now then five years ago when we received a prenatal diagnosis. Gone are the days of flexibility and spontaneity. Here to stay are the friends that understand even well made plans for an afternoon out can get tabled when Tommy is ill and he wants only mommy. Good friends last the lifetime of the road. And we are overjoyed he has a lifetime.

When a friend asks “what can I do”. I am ready with just one thing that might make our road smoother. For a few years, in the beginning, I told friends I didn’t need their help. Almost because not having a conversation was easier then, but now I realize how much better we are by talking things out rather than avoiding issues and needs. Now when they ask, I realize they are asking because they care about my family and want me to let them help us. I always have one thing ready in my mind. Sometimes it’s a small chore. Help fold our laundry and we can talk. Maybe a cup of coffee. Maybe asking for a dinner to be dropped off sometime. Help me reorganize Tommy’s medical cabinet. Other times it’s talking on the phone about normal issues, not the extremes, and exchanging encouragement. Sometimes it’s talking about the ugly extremes and getting constructive feedback, as hard as that is sometimes to hear. Even if to only tell a friend, just keep calling me. Our road is made smoother.

Shared by Sandi McMillan, married to Colin and momma to Hannah, Nathan, Thomas and Liam

Grief (again) and lots of Grace, what a week!

2011-05-20T17:35:00.000-07:00

A full week of activities for our family and lots going on this weekend.

Teenagers are always busy! Hannah has been working at our local Dairy Queen plus keeping up on High School, Running Start, cheerleading and gymnastics. Nate was offered two small jobs this week, yard work plus being a super sitter for our DsO picinic this weekend. He is registering for full time Running Start for the fall (just finished his testing). He is taking driver's ed now three nights a week, plus keeping up on his high school classes. I'm a tad envious that he gets to sail tonight on a 43 foot boat and camp at a gorgeous island here in the San Juans with a friend and his family. The weather and water will be a great treat for him.

Tommy and Liam have been busy too, not to be outdone by their older siblings. Liam is in T-ball a few nights a week and is enjoying preschool lots and the sunshine which means he is outdoors always. Tommy is healthy again, a little cranky though with his teachers and me, but busy at the Arc membership pizza feed and it was so sweet how the older people with disabilities just LOVE to see him and love on him a bit.

Colin has been hitting the gym this week, plus work and caught up on a few outside projects. We really enjoyed celebrating our nieces birthday this week at her pool party (she is 6 now) and Colin helped out tons with the duo. We will be setting up and helping at our local Down syndrome picinic this weekend which will be lots of fun and Colin enjoys meeting other dads.

I've been kept busy with work, children, housework, farming (our dairy goat has gone pro again with milking so soon there will be cheese) and trying to figure out schooling for the small crew for the fall. The preschool staff at our local intervention preschool have been wonderful. Absolutely supportive. But I have really been caught in the grief cycle again at an inopportune time. Right smack dab at the beginning of a school meeting with his preschool team plus an instructor from our local university who was there to access Tommy's communicative needs in terms of using an assistive device. Tommy's very favorite aide was 'pushing him' a bit that day to make choices using the pecs to communicate and well he got really frustrated and punched her in the face. Grrr. And when I heard that my heart just sunk back into that old friend grief and I couldn't stop the tears. For hours. The preschool team does such a fantastic job with Tommy and always, always has his best interest at heart. But Tommy is just so frustrated and trapped within his non signing, non verbal, barely using pecs body of a sweet self. So, hopefully the grant we received to fund a portion of an ipad will be the answer. The key. The interesting and spark that Tommy needs to become interested in communicating.

I've been given tons of grace this week. Truely each day this week has been an amazing journey in itself and such a great week with friends and family. I tell myself I can do this. My family can do this. We will all make it thru this phase of learning Tommy's communication needs and however it looks in the end will be just right for him. I've learned a new kind of patience. Perserverance. Salted and peppered with grace.

Down syndrome spring fling picinic

2011-05-16T21:09:00.000-07:00

If you are local to Whatcom County and have a child or adult with Down syndrome, come join us at the annual potluck picnic!

Down syndrome outreach of Whatcom County is having a SPRING FLING POTLUCK, MAY 22ND (noon-3pm) at Bellingham’s Fairhaven Park (107 Chuckanut Drive). (rsvp 715-0170, extension 205 or www.arcwhatcom.org).

There will be hempler hot dogs, games and activities for all ages. Super sitters will lend a hand with little ones and to give you time to meet other parents. See ya there!

Lip smacking good

2011-05-16T07:26:00.000-07:00

Tommy is officially well into "operation G-tube weaning".

His favorite drink of choice continues to be chocolate milk. Although last night with dinner he drank apple juice (mixed with water). I might even try some strawberry flavored milk and some milkshakes today and tomorrow.

We see the nutritionist this Friday to develop a plan for the weaning, which is a rescheduled appt from a few weeks ago. But this weekend I just had the energy and patience to try on my own with Tommy and so far, Tommy is doing a marvelous job!

We've had one g-tube feed in 48 hrs for water because his diapers said we needed to. Lots of sippy cup progress (I took the valve out). I watch how much volume of liquid is going in and I'm watching his wet diapers.

Please think good thoughts and pray for health and continued progress.

What works for us Wednesday - IEP's

2011-05-11T12:33:00.000-07:00

http://cornishadoptionjourney.blogspot.com/2011/05/about-those-ieps.html

This is from a Florida mom's perspective on IEP preparation. I don't think I could have written a description much better than this.

Our preschool team is wonderful and often bring more ideas and support to the table than we could ever. They are trying out a weighted vest with Tommy to get his need for sensory input met which will allow his body to then focus more on an activity or circle time. Side note, if you have ideas for chewies please let me know as he is loving surgical tubing. The teacher in our preschool has been so supportive with daily communication and ideas and well... it's perfect. Tommy has what I consider his aide, but I know the school isn't terming it that way. And he has great nursing services within the school there too for g-tube and attendance illness trending and notification to us because he is immune deficient.

Next week the preschool team, our local university and us are meeting to explore assited technology aides for Tommy because his progress on sign and pecs is a little slow. We may even expolore an ipad for Tommy as a way to spark some interest thru games, self regulation, and sequencing applications to use sign language and pecs to communicate his needs and wants. I was amazed when I saw the ipad that my friend Gretchen used with her boys, and then to see the twins use her ipad and be so 'sparked' into words and sign it blew me away.

Using big girl words.

2011-05-10T12:04:00.000-07:00

Tommy hasn't been feeling his normal self lately and all the green boogery eyes and nose was surely the cause. So the dr appt at 8pm last night (I could only get after hours) determined he probably has a sinus infection and maybe an ear infection but Tommy wasn't cooperating on the ear issues so that is a guess. The dr wasn't my favorite. But. I was able this time to use my 'big girl words' and communicate Tommy's needs. Which in the past with this particular doctor I let my emotions get too, well, emotional and I lost track of words and complete sentences and went straight to tears. So, this was much better for both Tommy and I.

Before the appointment, I had gotten snacks for Liam's T-ball game and went to watch him and Colin in what turned out to be a *hilarious* game of 4 year olds playing T-ball. Some were even fielding their own balls after hitting them.

We had a quick dinner as a small family, Hannah was working and Nate was at dad's house. Colin and I decided that maybe since Tommy was going to the doctor anyway, we would get the x-ray for
Atlantoaxial instability, which is a common orthopedic problem seen in people with Down syndrome (and have had the xray request from the dr for awhile). And we decided, since the blood lab work was nearing it's 6 month shelf life on our bulletin board we should probably get that taken care of too (anemia, thyroid, etc).

So, I treated Tommy to Dairy Queen french fries, hoping that bribe would last mommy a few brownie points for the xray and blood work. Plus, Hannah was working drive thru and after all the DQ is very close to our pediatric clinic, there were so many reasons to stop by. Hannah wished Tommy well and we exchanged love u's and we were off on the adventure of medical procedures.

As soon as Tommy was within the pediatric clinics and not even down the hallway to the xray, he remembered how much he didn't like this place. And he remembered, by flopping and laying down and not wanting to go any further. If you have a flopper as a child you will quickly know just how heavy that lil sack of potatoes becomes.

The xray tech showed me the box that Tommy should sit on "and look that way and have him hold his head really still between the glowing hash marks on the wall". What? He is four. "Okay, I'll place this stuffed animal on this chair and he can look directly at the stuffed animal, and hold still". So, I used my big girl words of "he is Tommy, non verbal, non cooperative in all things xray". "Okay, I'll call some help". So we modified the process by me wearing a lead vest, calling in more helpers and Tommy sitting on my lap and being restrained while other folks held his head still. It worked. It was quick for Tommy's sake. But really important information will come from this test on wether he can continue to jump on the trampoline and ride a horse, etc.

Then we did the dr visit and left his office at 8:45pm. Dropped the prescription off at the in-clinic pharmacy and asked how late the lab was open, which turned out to be 9pm. I looked at Tommy who was smiling at me (probably because the pharmacy was near the parking lot door and he had hopes of leaving) which I interpreted as 'let's do this mom' and we were off to the lab downstairs.

The lab tech was probably in high school and the size of maybe half of me, so I knew with Tommy this was going to be hard. She shared that she felt kids were hard to draw blood from, which I gave her tons of encouragement, said I would help her figure this out from Tommy's needs perspective, and oh by the way I need this to be done within 10 mins because I've got to return to the pharmacy for the antibiotic. Shy grin. That would help her work faster right? ha ha.

What worked best about the blood draw is that the lab tech was good at communicating with "her big girl words" and I was good at communicating exactly what Tommy needed (door closed, don't pull out the gloves/turniquet until you absolutley have the vials etc ready because those are his hot buttons, and yes he wants a pillow under his elbow). Took his shoes off and pinned his feet under my legs while he sat in my lap (his favorite place in the entire world) and took his left arm down to his side and she took his right arm with the beautiful vein in it (helps to know your child's best arm if they have lots of blood draws) and wal-lah! One stick and barely five minutes total from door closing we were done and Tommy was giving her a high five. Okay, I gave her a high five too.... and if I had cash on me, there was going to be a tip. She grabbed my shoulder and said she learned alot from me in that short amount of time. I reminded her that Tommy was actually the teacher, and even though non verbal, it was soooo important for her to understand how he needed things done. I'm mearly his mom and that using our big girl words helps so much!

What works for us Wednesday

2011-04-28T10:35:00.000-07:00

While Tommy and Liam were in the 0-3 year old program, we had access to home based services around OT, PT, speech and our lovely family resource coordinator to keep me educated on all topics of infant and early childhood. Then when we transitioned to 3-5 yr old early intervention school district preschool services, the OT, SLP and coordination piece became school based and I don't "see" and "learn" from these fabulous teachers. Our preschool, seriously, is the best practice and has the most amazingingly skilled staff. We have communication journals that inform us of what happened during the day and what to "work on" at home. And that works so well. Plus, the teacher is great at email when she can outside of classroom instruction and bringing me up to speed on current 'stuff'. But. I still don't get to 'see' how they are working with Tommy and Liam day to day like the home based services were. So. Me, myself, and I decided to take a few classes. Courses. Sessions. Training. On infant and early childhood intervention type activity and services.

Part of this decision is because Tommy is progressing in his own unique way (cough cough, not progressing) with communication. And as much as *all* the folks in his life are working on pecs and sign language. He hasn't made the huge progress I had hoped for. At 4 1/2 years old,still no words. I get a slap on my bum and he points to the kitchen counter and that means bananna. I sign banana, pull over the pecs for banana, still not initiating the communication. And some of this is expected. Delayed vision, delayed hearing equal delayed communication. But man I'm here to tell you, if he is 15 and still slapping my butt for attention and grunting. This wouldn't be good.

So, me and my friend A attended the Ds Community (pacific region of Wa state) conference in April. Although the topics were for older people with Ds and their parents and caregivers, we learned a ton and met some new people. It was our first conference on Ds topics.

Then last night, a bunch of folks and I attended the "my shirt tags are driving me crazy" sensory processing information (jam packed 3 1/2 hour session) on all things for kids that are sensory seekers or avoiders, processing issues in general. It was amazing. Tons of information that link, in my mind, to how he is frustrated with communication because he is a sensory seeker. Big. Time.

And next month, I'll be going to the Wa State Infant and Early Childhood Conference in Tacoma. Three days on topics of babies to age 8 (I believe). Here are the sessions in the conference I'll be taking:

1. Toolkit for active learning and successful communication for young children with multiple disabilities (all day class). This had Tommy's name all over it.
2. Snack talk: increasing communication and social interactions at mealtime. I wanted to take this one because he has a g-tube and I'm sure there will be ideas.

3. Using visual supports to increase engagement and independence in young children (pictures, objects, words, etc). We are really looking at the link between the visual supports and his communication of needs.

4. Improving the quality of early literacy experiences for young children with autism and other diagnosis (I'm thinking this may have some hints for Liam too as he has a delay in expressive speech)

5. Multi disciplinary approach to solving infant and toddler sleep problems (read that: we have a problem)

6. Picture pages- a link to language (heard great things about creating 'picture pages' for my lil sensory seeker that have tons of touch/feel items on them)

7. Identifying and implementing activities that address children's sensory needs

8. Music and early literacy (I can't remember the title but it's the one class I took for Liam)

So, this momma is going back to school. Would LOVE to hear what kind of classes/sessions are in your area. Does your local DsO host educational classes for parents and caregivers? Do they have childcare during the session? Do you have a parent support network where you can ask questions and learn more? Do you travel to the national Ds conference?

What works for us wednesday

2011-04-20T11:17:00.000-07:00

Scheduling multiple appointments involving different clinics within Seattle Children's hospital can be a daunting task. Living in Ferndale, Wa is like living almost on the canadian border so traveling to Seattle is.... a LONG drive.

I like to make most of Tommy's appointments at Seattle Children's on a condensed day so we can make one trip and see everyone we need to.

It's taken awhile to figure out how to do this.

First, I schedule mostly 'like' appointments on the same day and same location. And I ask the scheduler, whichever clinic you call first, to look at the schedules of the other clinics and try to schedule everything on the same day. For example, I just scheduled opthamology and ent on the same day. Tommy's left ear tube is almost out and his left eye (after clogged tear surgery) still isn't draining and gets alot of matter clogged onto it. The scheduler spent about 10 minutes locating a day that would work. Sometimes, the scheduler will even send a couple of emails inquiring about possibilities with different clinics schedules. And then they will call you back with a date that works for all appointments.

I try to schedule appts that require Tommy to participate in the morning, his best behaved and sweetest time. Audiology and visual tests are great for in the morning. Then in the afternoon, just in case he is snoozing, are the appts that usually require minimal Tommy efforts and mostly discussions about continued care items. I keep "Tommy's personal schedule and mood and possible naps" in my mind when I'm talking to the scheduler.

On a condensed date at Children's, I also ask my local pediatrician for all blood draws they would like. There is no one better at drawing Tommy's blood than a handsome man named Hector. Sometimes my local pediatrician will fax the labs needed straight down to Children's as an order, and sometimes they mail the order to me to hand carry down to Children's. Of course I then stop at the grocery store and get some hard candies for Hector. That man loves two things in life (that I'm aware of) hard candies and children. I've even asked (when Tommy was sick in outpatient) to have Hector paged from inpatient rounds to draw Tommy's blood to figure out an emergent situation.

The only clinic that I'm aware of that doesn't really work for us to condense is cardiology and that is mostly due to long echos and it seems that cardiology schedulers really don't look at other clinics to help consolidate with. So, usually I keep Tommy's heart day as just that with perhaps labs for bloodwork. And then separate days for his various other clinic needs.

Consolidated clinic days at Seattle Children's seems to work good by just asking your scheduler over the phone to help you coordinate some different clinics into the same day. Good luck! Oh, and I would love to hear from folks if you have even more tips, which I know a couple of you are very clever with how many clinic appts you can stuff into a day.

One other tip, while you are at a clinic within Seattle Children's, grab their business card and ask them how best to communicate needs for an appt and write that on the back of the card. All these cards go into Tom's care notebook and then I can take out the business card for the clinic I need to call and be reminded my dr only has appts there on Wednesday's OR the clinic warned me there is usually a three month wait so schedule early.

A surprising day

2011-04-15T07:00:00.000-07:00

Yesterday we woke up to snow! In April. What a surprise. It didn't fall for long and it didn't accumulate at our house, so my tulips were happy. Beautiful though while it was falling.

In the morning Liam had a 102 temp so I kept him home from school, sent Tommy though! Liam and I did run to the post office and pick up a box of new diapers for Tommy that we hope is going to be a better size and not give him rashes.

I worked in the afternoon and while I was at work I got a surprising phone call. I had read about the "Infant and Early childhood" conference that would be held in a city about three hours away. The sessions looked amazing, from communication with kids that have autism, to early literacy, science/math, grief process for parents who have a child with new diagnosis, and everything in between. The conference folks called to offer me a full scholarship of registration to attend the conference and bring back new skills in helping families in my area! HUGE. But, they couldn't provide hotel, meals or mileage. She suggested I contact the agencies that I volunteer at and see if they might have a small budget for the two nights at the hotel or mileage. I sent an email to those agencies and within the hour one of the folks called (and she hadn't even read my email yet!) about another matter and after we talked about the conference she said I could room with her as she is going also. Woo hoot! I promised not to crowd her out of the bed, ha ha. Or prank call other rooms.

So, I quickly called my wonderful hubby and told him about the conference and what had all happened and he was thrilled. Totally willing to care for the kids left at home for two nights so I could become a better parent and helper to others. Yippee! When I got off that call, a coworker came into my office and gave me a personal check to offset the remaining costs. Blown. Away. She said that she doesn't give to organizations, only to people that she sees making a difference. Alright, I cried.

So, next month I'll be attending the conference and cannot wait to share all the new ideas, tips, theories, and everything in between. This weekend, I'll also be attending a Down syndrome conference in Renton which is just during the day on Saturday and on topics of aging with Ds, dementia, and transitions to housing.

This momma is getting educated.

Spring break recap

2011-04-10T22:39:00.000-07:00

I had worried we weren't "going anyway" for spring break. A STAY-cation might be "boring". But looking back over this wonderful past week here is what happened. Some of this is vague and not detailed because we still need to keep our family privacy on some issues, but I so wanted to share with all of you how our simple spring break went:

Marine Life center touch aquarium and seeing the lil octapus "gumdrop", Charter Boat festival and getting a chance to tour onboard the HUGE charter boats that can take you up to Alaska or thru the San Juan islands... and fantastic lunch at the Web Locker.

I read three great books: Love Wins, True Love and homegrown tomatoes, and the Lost Quilter. Hannah read the bible, daily. Liam read a stack of Caldecott winner books, his fav was Seven Blind Mice (beautiful). Nate caught up on reading homework. And Tommy even opened a few books.

Nate and I survived Algebra II homework catchup that included geometric sequencing. He is one smart kid that can easily summarize theory. Blown away.

Getting to see my new nephew Maxwell. Oh so sweet! My sister Tami and her hubby Jason are smitten with this lil one! Max has a great big brother Andrew.

Inspiration from *many* people that have been placed in our family's path. People we thought we knew, but not deeply enough, and now are sharing their hearts and encouragement for us. Very sweet stuff from others! Meeting us where we are ate. Not trying to make things better, but just being friends.

Delicious recipes were tried, including a Choco chip/oatmeal lowfat cookie that was only 90 calories each and tasted so good!

Spring cleaning at my parent's house, which was my sister Debbie's idea. Gutters, windows inside and out and moss washed off steps so they don't slip. My parents are simply the best and it is such an honor to help them out and I only wish we lived closer so we could see them more often. I have the best memories of my childhood and just loved sprucing up their wonderful home. Great idea Deb and really fun time with ya!

Still in lent, I think twelve days remain from the fourty days total, and still struggling with my sacrifice of giving up facebook. Looking forward to a wonderful celebration at Easter and the amazing story to be told.

I have struggled with bersitis in my hip since the twins were born, yes four years now. So I received an injection (from a great dr) and can say I'm officially pain free! Back to the gym this week.

Time spent with each of my four kids doing things they love. Alone time. One on one. Just absorbing and savoring where each kid is in their lifetime and how unique and wonderfully made each one is.

An amazing amount of healing. Forgiveness. And letting go of some huge heavy yukky stuff. Man alive, I have been packing some serious hatred for a year now and am free of that darkness. Done. Gave it over to Him and feel so much better.

Colin looked more seriously into purchasing a scooter/motorcycle to save gas (oh my goodness gas is expensive). He has been going to the gym alot during spring break and did one fantastic run to Costco so we have full pantries now! I love you Colin!

I think that is it. A wonderful spring break even though we had a STAY-cation.

Preschool pictures

2011-04-02T08:40:00.000-07:00

Our preschool teachers are amazing, instead of the typical school pictures which cause these two so much stress and results in the funniest/saddest school pictures ever..... they had the photographer in the classroom this time! Brilliant! I thought you would enjoy. Tommy and Liam are 4 years old in these pictures.

Can you hear me now?

2011-03-31T12:47:00.000-07:00

The twins are scheduled for hearing tests at our local university Hearing/Speech center later next month. This will be their annual hearing test but we are using our local university this time and not our previous hoge podge of different audiology centers. So, this means paperwork coordination galore. Yesterday, I spent awhile signing and faxing consents for audiology reports for both boys from Seattle Children's and Bellingham ENT so those histories can go to our university to better prepare the audiologists there.

To back up, hearing loss is mild to moderate in both boys, at times, and they have PE tubes to help reduce fluid and recurring ear infections. Their reports last summer put them at "age appropriate range" for hearing, but indicated mild to moderate loss. I noticed Liam having difficulties hearing his swimming instructor during lessons, and I would casually get right in front of his face and repeat in a fun way what the instructor just said so he could hear it better. Anytime there is background noise (music, loud splashing in the water, talking, tv) I notice they have trouble following directions or even hearing those directions. Tommy struggles with background noise alot. And at the last Wa State Sensory Disabilities meeting with our school disctrict preschool team there was mention of using the FM transmitter in the classroom so he could better hear teacher instructions. In addition to sign language, picture communication, and spoken words, the FM transmitter might something the audiologist would recommend depending on what their hearing reports show.

Here is info on FM transmitters in classrooms:
In a typical classroom, there are often many distracting background noises such as talking, paper rustling, shuffling feet, air-handling systems and audio-visual equipment. These sounds may be almost as loud as a teacher's voice. In addition, most teachers move around the classroom or turn away from students when writing on a chalkboard, causing the loudness of their voice to vary. For most students with normal hearing, everyday classroom noises do not cause problems. For students with a hearing loss, however, background noises and distance can interfere with hearing and understanding. For these students, hearing aids can amplify the teacher's voice, but they also amplify background noises. Even with the use of hearing aids distance effects are still present. Students with minimal or fluctuating hearing loss, unilateral (one-sided) hearing loss or attention problems also struggle with background noise interference and distance effects, and may not be candidates for hearing aids.

FM (Frequency Modulated) systems may be a solution for many students. FM amplification systems (also called auditory trainers) transmit the teacher's voice directly to the student at a constant level, insuring that the teacher's voice is heard above the level of background noise, regardless of the teacher's distance from the student.

FM systems consist of a microphone, a transmitter (or mic-transmitter combination), a receiver and some method of routing sounds from the receiver to the student's ear.

The teacher wears the microphone and transmitter. The microphone is placed eight inches or less from the teacher's mouth. The transmitter changes the electrical signal from the microphone into an FM signal, which is sent to the student's receiver. Because the teacher's mouth is close to the microphone, background noise is much softer by comparison.

In addition, no matter where the teacher stands in the classroom, the student will hear the teacher's voice as if it was coming from a few inches away. Most FM systems also allow teachers to connect audio and audio-visual equipment to the FM transmitter, providing a clear audio signal to the student.

There is a large variety of FM systems and options available for the classroom. Parents, the student, school personnel and the student's audiologist should work together to choose a system that will provide the most benefit and flexibility in the student's environment.

Once an FM system is chosen for a student, it must be set to fit their individual listening needs. An audiologist, using specialized test equipment, adjusts both external volume controls and internal response controls. In addition, school personnel benefit from in-service training about using and troubleshooting FM equipment. FM system use requires planning and teamwork to help students with hearing losses succeed in the classroom

Happy BELATED World Down syndrome day!

2011-03-27T15:50:00.000-07:00

Well, World Down syndrome day has come and gone.... it WAS March 21st, but we celebrate it today, because I just remembered while catching up on friends blogs.

This video we made of the twins to date for a fundraiser last fall for our local Buddy Walk. Guess I forgot about the exact date for the "world" celebration because Down syndrome is only part of who Tommy is and doesn't define him by any means. Our family has focused more on abilities lately which is wonderful and due mostly because Tommy has been healthy. So, let's celebrate our uniqueness one and all! Enjoy
http://tommyupdate.blogspot.com/2010/09/tommy-story-at-onetruemediacom.html

Not happy, thanks to UHC

2011-03-25T13:09:00.000-07:00

Usually, I'm happy. All six of us in our home have health insurance. And we have access to quality medical care. For that I'm happy and grateful. But recently, when we needed some education and awareness around substance abuse issues, and I entered a parallel universe. The behavioral health, health insurance parallel universe (cue in music from Twilight Zone and layer over one really tired and frustrated mamma bear).

It all started back in October.   We pre-approved with our insurance so we get into a local outpatient treatment provider. Pre-approved. This means we had a long conversation with our insurance company United Healthcare and then with HMA and all seemed fine. Yes you have benefits. Oh, yes you have a need. Yes, you can see that provider, here let me note that in your file and send you a letter at home that says you are approved for treatment and we will provide x benefits.

Fork over CASH to the provider because they haven't dealt with United Healthcare and aren't sure how the claim processing will happen. Hmpf. Well, UHC says we are preapproved for this treatment and you are the provider we can use (insert me looking like Snow White here, all innocent as the driven snow).

Twelve weeks of outpatient treatment pass, SUCCESFULLY (praise God), and I'm talking to the provider's billing clerk and the claims just haven't been processed by UHC. Hmpf. Wonder why? And gee whiz I'd like my cash back at some point.  I'll call them (insert me looking like June Beaver, all organized and tidy with my notepad) .... MANY times. Tracking reference numbers, answered questions, looked up the provider taxID, license status, address, phone and fax.... thinking I was answering UHC's questions to process the claims.

No.
I.
wasn't.
I, apparently now, have been chasing my tail and buying time with UHC.

Today's phone call, after the provider called and I called supplying repetitively the same information went like this. Well, we at UHC have SO MANY claims we ship them off-shore to be processed and depending on workloads it could take 30 days after each new piece of information, you supply, to come up with additional questions and problems with the claims. We are so sorry. See there are SO MANY claims they are done now by outsourcing to India. Hmpf.

And after answering a few more questions today, which have been answered repetitively before by me and the provider, the customer service person shared with me that she has been downsized from UHC offices into her own home (after I heard a dog barking on the phone, again cue Twilight Zone music) because the company has decided working with staff in India is cheaper than hiring and keeping incredibly personal confidential health insurance local.   I lost it. Asked for her to mark the issue "expedited" for approximately the 12th time and said I know that nothing I ask ... or say... or answer.... or pray... that these claims will never be paid by UHC. It's a losing battle on getting the services paid for. I'm angry, defeated and really upset. They are such a beheameth.

Looking on the brightside.... the services we got thru the local provider were EXCEPTIONAL and we are back on track as a family. Because we are a tight family. Albeight the expensive track. The track that focuses on walks to see the beaver after dinner, watching movies all six of us squished onto the couch, late night talks, sharing dreams for the future and just being comfortable with us as us.  Urgh, UHC you won't be thought about for another 30 day period!

What will you do?

2011-03-22T08:52:00.000-07:00

After reading about this sweet newly adopted orphan, what will you do? Cry your eyes out like I did? Pray that God heals her and her family from the horror they have experienced. Go ahead, do something. You know you can. Don't lead the comfy life.

http://carringtonscourage.blogspot.com/2011/03/urgent-please-pray-for-carrington.html

Ed-u-macation

2011-03-22T08:31:00.000-07:00

Actually, education. Obviously our goals as parents is to create life long learners. Curious people who ask questions and want to learn about the world we live in. Even as they become young adults and all the way thru their older years. Yes grades and progress are important at some level, but I really hope all four of them become life long learners.

Hannah joyfully announced today she started spring break from Running Start. She has enjoyed two high school classes plus one of the community college courses. Next quarter she is taking three college level classes plus one at the high school, whew! Hannah is an excellent creative writer and her voice really comes across when she writes.

Nate has been busy with sophmore year and steadily working on honors biology and algebra II. Of course he has pe, english, history too. When his focus is on learning he does really well. Nate is very curious about the world, loves to debate current issues and discuss his thoughts. He has a spatial brain so math and physics concepts are easily understood.

Tommy is doing great in his Pre-K program. At a recent conference we all discussed the value of sight words and pictures for Tommy in combination with sign language. So I'm starting the "See and Learn program" at home. http://www.seeandlearn.org/en/gb/language-reading/ I like it because there are plenty of instructions, it's fun, and it's free! I've got to call my friend Steph and see about her laminator and make some progress on getting these words and pictures a little more.... Tommy proof. People with Ds are visual learners I understand so this is an exciting program to use. Tommy is interested in sensory exploration; if it's musical, tactile or visually interesting he wants to learn more about it.

Liam is also doing great in his Pre-K program. We are starting fun home studies on BOB books, some prewriting coloring, and pre math patterns with sorting and puzzles. Liam is a sweet boy who is slowly learning and blossoming. He loves to learn about mechanical aspect of anything, so we need to keep his interest by making things move, roll, tumble, and keep learning low key and fun.

Enjoy today

2011-03-20T08:52:00.000-07:00

Lots to enjoy today!
Thanks to spring sunshine.
Oh how I have been patiently waiting for you first day of spring.

Small boys running behind weathered push toys thru the yard
Wishing my sister Tami Happy Birthday!
Church service with my family
Chicken salad sandwiches for lunch
New parent reception at Down syndrome outreach, can't wait to hold me some babies!
Starting a new quilt for a very late wedding present for my nephew and his sweet bride
Sketching out our vegetable garden and planning who is going where, eggplant and melons too this year
Remembering watching Narnia last night, curled up with my teens while all their friends were at prom
Sunshine creeping across hardwood floors
Laundry steadily transformed from crumpled floor messes to hangers and stacks in each persons basket
Hot coffee with vanilla creamer
Two boxer doggies wagging their nibblet tail stubbies in excitement at running outside without rain
Plans for soft tacos for dinner and winding down before the chaos of the week begins... again.

Enjoy today!

Soggy day

2011-03-12T16:51:00.000-08:00

Liam doesn't mind soggy, rainy, wet days outside when there are rescue heroes to play with. Or a train to create out of cars.

Liam even likes the dinsoaur in a farm truck trailer.

We decided to make "I spy bottles" with colored rice. Liam really likes to help.

Hannah even got into the action of mixing the colored rice with the items inside so Liam would need to look extra hard. One bottle has the alphabet. The other bottle has items Tommy will enjoy finding.

And we ended the day with more meals for our freezer and to bless my VERY pregnant sister with some meals. Mmmm.

Nate's 16th birthday

2011-03-12T16:41:00.000-08:00

Nate turned 16 this month! There is only a year between him and Hannah. We celebrated at a pizza place with 18 of our big ol extended family. Way fun!

Nate is my mellow kid, although he is really coming out of his shell this year, very sweet, smart, loves playing bass guitar, really enjoys music (favorite right now are the knowmads), helps me with small kids and chores, longboards, likes the outdoors and is trying relaly hard to grow into a young adult.

And Gabe, my nephew, turned 10! He is an amazing boy who is athletically talented, a good younger and bigger brother (he is second oldest in a family of four), great at board games (I think the one he beat me at was flicker football very fun), loves animals and is a super sweet cousin to my four kids. I have really enjoyed watching him growing up into an older kid now.

The week in review

2011-03-10T10:49:00.000-08:00

Huge fluffy snowflakes falling heavily in the morning sunrise
Steel cut oatmeal warm in a bowl with agave sweetner and coconut milk
A prank quickly played on the school bus driver by the thug of our toddler named Tommy
Planning two baby showers this month has reminded me what a joy mothering is and the miracle of life
Slivers of sunshine coming thru windows and casting shadows around toddlers playing with toys
Hannah's almost broken down VW bug on a freeway onramp turned into a blessing in so many ways
A sixteen year old boy in our family now and oh how he is loving his longboard to skate on
The word 'twin' still popping up in our daily language although so infrequently now that they are individuals
Farm animals swelling with their spring babies are as wide as they are tall and sweetly waddling
Gym workouts with my hubby have left us both with widdling waists and plans for our future
Someone decided to join teen youth group at church
Wet swimsuits to be washed and dried before the next swim lessons for the dynamic duo
Moments to volunteer and serve still able to be carved into nooks and cranny's of the day
Amazing new families met that I get so much more out of then they ever could gather from me
Shared dinner with eighteen of my family and loved and laughed and hoped it wouldn't end
Prayed for continued health of my sister being pregnant, my dad's open heart surgery mending and....orphans
Hope next week is just as great!

Down syndrome and combined hearing loss with vision

2011-03-03T12:37:00.000-08:00

For Tommy's first year of life he had a combined hearing loss and delayed visual maturation. It wasn't until he was nearly two years old that both were corrected to the point that he was seeing and hearing within normal ranges for his age.

The processing of that vision and hearing has needed some catch up time.

We have been blessed with working with Wa State Sensory Disabilities Services. This is taken from a recent observation of Tommy within his sweet preschool environment. I thought it would be helpful for my extended family to see where he is in language development and how he favors, slowly, sign language.

Observations: Tommy cooperated with the morning routines, followed one- step directions when spoken and signed, engaged in building blocks, drawing, circle time and large motor activities for 5-10 minutes at a time. A big improvement from last year! Tommy initiated communication with different teaching staff during the morning: Examples of communication skills included:
• Getting adults’ attention by vocalizing or gesturing and thensigning or gesturing for what he wanted
• Establishing eye contact
• Spontaneously signed EAT, CRACKER, HERE, MUSIC, BLOCK, SPIDER, HAPPY, MORE PLEASE, MORE CRACKER.
• He vocalized with the sounds “ba ba,” “buh buh,” “da da,” “ha ha,” and imitated a mouth movement the teacher made.
• Chose a snack by selecting from pictures offered

Discussion:
• Vision and Hearing updates. Sandi reports that Tommy’s hearing evaluation reveals with PE tubes, his hearing is within normal limits. His original diagnosis of “delayed visual maturity” no longer applies, according to Sandi’s summary of his vision test. This means he continues to develop visual skills and that he has access to sound, even if he is delayed in attaching meaning to speech sounds.
From classroom records, he consistently understands about 40+ signs and regularly uses 15+ signs which is age appropriate for 36-60 month for interaction, vocabulary, grammar and speech.
Research shows that printed words (that the child already understands but doesn't say yet) may be helpful for learning speech, for children with Down syndrome
Use of pictures, and "experience books" may be a way to build vocabulary at home and at school

So, I'm off to get a laminator machine (or use Amy's) and make pictures with sight words for familiar objects at home that he can then use to request. This was INVALUABLE feedback. And although VERY specific to Tommy, I wanted to share his progress and some ideas on how to continue on from this point.

Duo learns to swim!

2011-03-01T07:00:00.000-08:00

Last night was the first swim lesson for the dynamic duo. They were EXCITED! We don't have a swimming pool in our town so we drive to Bellingham and enjoy their BIG pool center. The duo are in the small pool which has a graduated ramp to get in and little ropes to divide the pool into the two classes that use it.

I had NO idea what was going to happen with Tommy. My son usually loves water, but the loud environment and chaos *might* have been enough to send him over the edge. But both boys did terrific. The center wanted me in the pool with Tommy to be his 'aide' which sounded great over the phone and in the water it worked terrifically. I did everything the instructor did, used sign for Tommy so he could use the signs back to me and the instructor. Wow. Impressed. Both boys:

put their faces in the water
sat on the wall
waited for the instructor to say "your turn" then slid their bum into her
introduced themselves to their classmates ( "I LIAM" and Tommy used his name sign a "T" to his mouth)
walked the width of the pool in the water using their scooping hand movements back and forth
assisted back float (not pretty for Tommy but he did it)
JUMPED from the side of the pool in a standing position to the instructor
walked the width of the pool blowing bubbles in the water (Tommy just had his chin in the water, no bubble)
sang lots of songs
sat on the wall and kicked their feet making big splashes

This is Preschool level 1 and age appropriate for them. After the class the instructor and I talked, I wanted her feedback if we were too labor intensive (I'm being honest). She observed Liam doing everything, and said Tommy tried or did everything also. She said it was the perfect class for them and as long as I could be with Tommy it would work great. Whew. Good. Except for me in a bathing suit. And the fact that I came straight from work and daddy forgot their post swimming clothes. And it was hailing. Next class is tomorrow and we hope to get there a little early to view the adaptive swimming program and see if that would be a nice addition for Tommy.

Swimming is so important. A skill to have in the northwest for sure! Hannah and Nate learned to swim at very young ages and Hannah competitively swam for Bellingham Bay swim club for two summers. I have terrific memories of many years of swim class that my parents religiously took us to. Hope the dynamic duo will enjoy years of swimming instruction too.... and we will keep in fun!

School is in session

2011-02-25T06:31:00.000-08:00

Yesterday started with a meeting that we had requested with one of our favorite state agencies "Washington Sensory and Disability services" and our wonderful preschool class to see *if* we are on track with meeting Tommy's needs for learning styles, environment, sensory issues and just also to talk about the next year.

K, the consultant from the state spent two hours observing Tommy and how we accessed his education thru the multi modes that the preschool has. He is four now and still non-verbal, so he uses the picture system and sign and lots of vocalization/wiggley bum/pointing to get his needs met within the classroom. Tommy has been very fortunate to have what feels like, although technically never said, an aide that signs.

The summary from K and the preschool teachers was very positive and focused on all types of resources for Tommy to increase his language (sign, picture, verbal) to 100 words and then over the next year to 300 words. His chewing and licking was addressed a bit also which gave me lots of ideas on how to meet his sensory seeking in that area (literally he is chewing clothing and licking most smooth surfaces, gross).

Even though I teared up a couple of times realizing some of his abilities are still around 18 month, the meeting was fantastic and I'm amazed at the skill sets of the preschool teachers and the consultant. God has placed such wonderful people in our path and they love Tommy just as much as we do! I've decided to post Tommy's IEP, the consultant's report plus a summary of a bibliography I was given on resources for language for kids with Ds.... soon.

The afternoon included a phone meeting with Hannah and Nate's high school counselor. Heavy sigh. I have been fighting a battle with the HS to get Nate's semester grades to include his prior work at the private school. A long battle. And yesterday it was confirmed that I had less than a 1% chance of success in getting the teachers to include his prior school work. Makes no sense. So, his grades reflect a kid lost within a HS paperwork system and not one of a kid's progress, aptitude and skills. I also asked the school to meet with Nate because he wants to adjust one of his classes and again they were stuck within their 'system' of protocols. Grrr. We also spoke about SAT and ACT testing for both of them in preparation for college applications. I apologized for my grouchiness in much of the latest emails and in person meetings, and the counselor shared that I'm fighting *really* hard for my kids, and although uncomfortable for all, it's out of love and they realize that. They are just paralyzed within systems. We closed the conversation talking about substance abuse counseling and that has been going well, so I believe he is on track for growing some adult life long skills in that area that has been slightly tough (very minor type of substances though).

And one piece of good news came in the mail, Tommy is requalified for DD services thru our State! At age four he was dropped from the program because I didn't do 'something' with 'paper' 'you should have received'. So I spent a lunch hour and two dollars in parking meter to share with the state that "HE STILL HAS DOWN SYNDROME". Sent paperwork to my doctor. And he is requalified. Yippee! I love a good ending.

Today it's off to work and frigid temperatures and it's Friday! Enjoy your weekend.

Say Cheese!

2011-02-19T15:42:00.000-08:00

I had the opportunity to treat my sister Tami (very pregnant) and my mom to a cheese making afternoon class for their birthdays. We ate, laughed, talked and learned to make soft and hard goat cheeses. Because one of us has a goat, yes that would be me. Here is Tami to the right and our wonderful cheese making teacher Kristy. My sister has a soft cheese hanging.

Kristy had already made a hard parmesan, and a pressed cheddar which both needed to age for about nine months (hmm sounds like a pregnancy). We enjoyed both of those cheeses and lots of other goodies while Kristy taught us the chemistry behind the recipes. Yummy coffee and tasty wine and lots of cheeses.

My mom had a good time. I just absolutely love seeing her, only wish it was more often. We always have a good time together.

And here is my sister Tami's belly, she loves to show off her second little boy, they are naming him Maxwell. I think he liked sampling the cheeses too!

After the class I decided the parmesan cheese and the brined feta cheese would be my first attempts. I am so excited for spring to get her and my goat to freshen, once we have goat milk again.... I'm making cheese!

Lately

2011-02-19T15:31:00.000-08:00

Four of us had dental appts these past two days. Liam got to sit in the big chair and was such a pro at the water/suction task. All four of us had no cavities. Tommy and Liam see a pediatric specialty dentist and she has been part of our team for awhile now, like three years or so. She is a huge Tommy lover, and Liam too. We shared hugs and reminisced for awhile, it's so nice to see her twice a year, she is a great dentist.

Hannah turned 17! She is in the middle of her friends Tessa and Alyssa. We had numerous dinners and treats and just plain fun. She is bright, beautiful, athletic and very outgoing, I'm so happy to call her my daughter.

Valentines day for the preschool teachers included little apple shaped hand sanitizers. The smell was terrific and I thought during these winter flu-ish months it was thoughtful. Colin and I got to spend awhile in the preschool room on Friday and were just so impressed with how Tommy and Liam both engage with their teachers, SLP and OT. They move thru each of the activities with a quiet confidence now and have shown so much growth. Their preschool teacher is the best!

Thick

2011-02-05T09:04:00.000-08:00

Ever feel like you just crawled thru thorny blackberry bushes? I mean the type of blackberries that have long thorns on them? Army crawling your way thru blackberry bushes in the dark. Not knowing if, or when, the end would be in sight? Ever get to the other side of those blackberries and feel like curling up in a fetal position and just suck your thumb for a while? Like forever? Heavy sigh, that's what it feels like for me navigating issues in the last six months of mental health, substance abuse, medical, work, amazing tiredeness, high school struggles and the list could go on but I'm sure you have a list too and don't really want to read mine! Recently, I find myself eeking out the "other" side of the thorniest blackberry bushes and noticed that I might feel a bit stronger. A bit more confident. A bit more of a momma bear than when I had to get into the army crawl and navigate thru the dark bushes that leave you scratched and bleeding. A bit better as a human being? If that bit is even the smallest measure of an improved skill set.

I never thought I would be "that mom" who had "these issues" but here I am. And my kids are fine. Actually, they are better than fine they are doing really well. Each developing so uniquely and beautifully in his or her own way at their own pace and amazingly taking accountability. After spending hours with professionals and making the efforts needed we have plans for the next six months and will take all of our issues one day at a time. Because that's how we made it thru the thorniest parts, just focusing on what was in front of us at the time. And enjoying the beauty along the way.

Do orphans NEED to be saved?

2011-02-01T16:50:00.000-08:00

As we continue to discuss within the confines of our own home, our hopes and dreams of someday, in someway, somehow, adopting.... it's posts like this that inform and weigh on our hearts. Especially the part titled "reality is a weighty thing".

http://www.rageagainsttheminivan.com/2010/10/do-orphans-need-saving.html

4 year check up for the dynamic duo

2011-01-28T13:58:00.000-08:00

Earlier this week we met our new pediatrician and she is just as great as we heard. Tommy and Liam really enjoyed her 'mom' type style and comforting comments. She kept the check up fun while very informative and covered all the bases.

The boys had five immunizations (four plus the seasonal flu vaccine). Liam was so sweet and announced to be after each painful injection "I did it mommy!"..... "I did that one too!". I cried, he didn't! But poor Tommy needed to be held by three people and it just was horrific. He got lots of praises and hugs afterward and was nothing but smiles.

We are going to start a multivitamin chewable does anyone have recommendations?

We received the orders to have the xray of Tommy's neck area done to see if he has "atlantoaxial subluxation or dislocation" which means the distance on X-ray between the atlas (1st vertebra) and odontoid process (2nd vertebra) is more than 4.5 millimeters (mm). Sometimes this happens specific to Down syndrome. And then there would need to be restrictions on sports, horseback riding, trampoline, etc. Since the immunizations were painful, we made the decision to come back and due the xray later.

Sleep training Tommy for the past four years has been exhausting. For him. For me and Colin. For his roommate twin brother Liam. And for our family. Tommy doesn't sleep thru the night. He is a gypsy of epic proportion. One night I woke to find him watching western movies in our living room and about two dozen yogurts were strewn around in half eaten portions and Tommy looked like a teenager sprawled on the couch. So, I begged for melatonin. I remember some friends mentioned they use it with some success. It's a naturally occuring compound. In humans, melatonin is produced by the pineal gland, a gland about the size of a pea, located in the center of the brain but outside the blood-brain barrier. The melatonin signal forms part of the system that regulates the sleep-wake cycle by chemically causing drowsiness and lowering the body temperature. We have hopes that this prescription will be helpful for Tommy to regulate his sleep schedule.

And last, Tommy received a blood draw order for a complete Thyroid panel to double check if he has hypothyroidism. Probably next week, I'll get enough courage to take him in for a blood draw. It's an important test and I don't want to put it off, I just want to give him enough of a break between these tests to be human and a little kid again and relax!

Liam weighed in at 43 pounds and measured 42 inches tall, 90th percentile for both weigth and height which is nicely proportioned if I do so so, just a tall tank! Tommy is a whopping 39 inches tall and 37 pounds. Which actually places him in the lower 25% on a typical growth chart.

Two little boys counting their immunization stickers.

Got it!

2011-01-25T12:55:00.000-08:00

I think I have figured out the concept of "pages" in blogger.... now I've got the medical and farm girl pages and I'm guessing I will be the only one in the future to look at those... but both will be helpful to me :) Thanks all for helping!

Medical stuff

2011-01-25T08:54:00.000-08:00

I've seen some blogs recently that have had tabs across the top and one has "medical information" and is password protected just for family to access..... how do I make one of these? We are in the process, not by our choice, of switching pediatricians. Tomorrow is our first appointment (the duo's 4 year check up) with our new doctor. While we are between doc's we have had two visits for Tommy with other dr's to "get us by" until our new doc is established.... and both visits Tommy needed antibiotics.... and both visits his patient chart (extremely thick, volume three) is MIA.... and of course both doc's asked me which antibiotics he has been on before... grrrr. So, I want a tab on this blog, which I can access from my little ol' droid smartphone and be able to keep a parallel chart there for Mr T. Yelp? Anyone? How do you create tabs within your blog?

Other updates from the homefront.... Colin's knee isn't mending very well so he is starting four weeks of physical therapy. Our new babysitter dislocated her elbow snowboarding over the weekend so we hired our lovely young neighbor girl to be the "arms" while our other sitter can over oversee the "how" things are done. The duo is loving having daddy here recovery, their usual afternoon sitter PLUS our sweet neighbor girl.... all while momma is at work. Somehow, someway, this is working just fine for us.

Tonight, I'm joining my neighbors for a girls night of ordering our garden seeds and sharing experiences, tips, what not to plant... what we can share... and wine. I have been looking forward to this evening and sharing gardening ideas. I'll post some tips later.

Off to put these boys on the school bus..... have a great day!

Potty training, full speed ahead

2011-01-17T19:56:00.000-08:00

I ramped up our potty training efforts and made small progress today. Lots more practice which is good. I moved our diapers, wipes and ointments into the bathroom. No more diaper changing table. All things poop and pee happen in the bathroom now. We watched Elmo's Potty video a few times today, they loved it. And I resorted to BRIBES. I packed up the duo and we went to the dollar store and picked out some of their favorite little plasticy toys and told them they could select one each successful potty episode. This was a HUGE motivator for Liam. And whatever Liam does, Tommy is really interested in, so the bribes worked well. We had a few accidents, mainly with poo, but we made small progress today and lots more practice. I didn't scold them for their accidents, just reminded them the potty was there and even took their accident over to the potty to show them how it should go there.

Our potty practice was interuptted today when we had to take daddy to the dr, because in his knee surgery recovery his incision looks infected. Poor daddy. He got an antibiotic and the duo was really good at the orthopedic surgeon's office. This was important because I have calculated the mean age of the clients there at 80 yrs old. We didn't want to bump into anyone with our 'boy rampunctious energy' and knock them over by accident. Daddy is resting again and his pain is a tad bit better.

A few smiles for the week

2011-01-12T16:26:00.000-08:00

My dad has done GREAT after having double bypass and an aeorta valve replacement in his heart. Day three and he has taken steps and has most of his wires and tubes out. He is eating and most importantly teasing everyone! Oh, by the way, he is 87. And I love him so much. He always makes me smile.

Tommy is on oral steroids for a recurrent sinus infection that has caused a bit of a rattle in his airways, a different antibiotic (because the last one was within 6 weeks, poor Hirschsprung's is not going to enjoy another antibiotic this quickly), and nebulizers of albuterol and pulmicort twice a day. Being a mom of a child with special needs is a humble job, I made a mistake on his nebulizers when we were switched to generics and I now know to ask more questions, or learn greek ;). Not harmful for Tommy, but not as helpful as they could have been during the week I made the mistake. The pediatrician that we saw last night, not our normal one, suggested we revisit our immunology and pulmonary care teams and get a stronger stick soon. Perhaps something like Singulair might be added to Tommy's daily defense meds. We saw Dr Gass and I don't mind posting here his name, although I don't do this very often, but I fairly sure he is older than my dad and the bond that has developed between Tommy and this dr is remarkable for their infrequent visits. There is something about that dr that cares so deeply about my son. He reminded me, Tom-Tom's lungs are more special than Down syndrome.... they are for some reason still very fragile, a simple cold turned sinus infection can cause him to crash quickly.... and the oral steroids have worked so perfectly with clearing up his lungs. Tommy is grinning ear to ear today, back to his happy self.

Eight legs and two wiggly tails gives you an idea of our two six year old boxer girly dogs. Usually, they are active and happy but now have arthritis which acted up with the cold weather. Enough to cause my husband to make a vet visit and me, 80 miles away with my dad, to have a very over active imagination about what may have happened to them. They are back to their happy selves after steroid injections and a supply of arthritis meds. Their smiles are their tails wagging!

All six of us are enjoying a birthday dinner for Colin tonight, lots of smiles will be had. Hope your week has been filled with a few smiles.

Organization, safety...... and fun

2011-01-09T09:52:00.000-08:00

I finally got the bug to get organized.

Well, I'm still not.

But at least I've gotten a few steps in the right direction.

And would LOVE anyone's ideas on how they keep organized.

Here is the view from our front door/hallway toward the kitchen and our dining room/homework area is to the right. Each of our four kids has a drawer (this has happened for a few years now) and keeps their school related items there. On the shelves of this open cabinet are board games, card games and learning toys for the smaller crowd. The drawers at the very bottom have stacked board books, some soft cover books and at the very bottom two drawers are Tommy's most favorite "lights" and "strings" and "gears" to play with.

I keep the dynamic duo's favorite items on the bottom so they can self pace their play. But the items that need my help are 'special request' and stored out of reach to prevent frustrations. Tommy and Liam's coats and backpacks are hung from the side of this cabinet which keeps stuff up off the floor and clean.

The gate between the kitchen and dining room is convenient when we are watching a movie in the living room and I want Tommy to stay a bit closer to me for safety. But it's hard when I do laundry for six of us and have to hop over the gate and still make sure my little "runner" is where he needs to be and not escaping. The gate below is new and it's at the base of the staircase to prevent him from getting upstairs and into things. Both gates seem to be good "physical boundaries" that he respects. Hopefully soon he will just hear the words "no stairs" and be able to follow that direction, but for now, the gates are needed.

We have also had hinges at the top of some of our key outside doors and pantry because Tommy will randomly leave the house or rummage thru the pantry. The handles of most of our doors have safety knobs to prevent him from leaving also. Of course our acreage is fenced, but none the less I have seen his little half clothed body running to the pasture more than once so I'm trying to keep his little gypsy self inside the house with physical restrictions until his "following directions" improves and he can understand that we stay inside (until we have at least clothes on).

All of our safety stuff is more for my peace of mind in keeping Tommy and Liam safe. Liam can follow directions fairly well now, but Tommy still has a wandering foot and needs some of the physical boundaries to keep him safe. I would love ideas for a little gps unit that we could use on Tommy while camping because we still haven't convinced him that our campsite is where he stays and boy can this little guy run. Of course nothing ever replaces my watchful eye, but the gps would help just in case he slipped out of my sight while camping.

Another step toward organization was my van. We finally purchased two taller car seats. These were a fraction of the costs from ToysRUs, recommended by my friend, at Costco they were $85. Alpha Omega Elites. We wrote each of the boys' name on the red adjustable head rests at the top so we knew whose was adjusted for whom.

And in action, they are terrific! I loved saving the money, having something safe and comfy for the boys. Car seats that are easy for me to use and keep their heads from 'flopping' over when they sleep. When we traveled to our cousin's Andrew party, one captain chair was folded so Nate could use the top for his laptop. Hannah is in the passenger seat gabbing at me the whole way :)

My sister Tami, her hubby Jason and their now 5 year old son Andrew. My sista is very pregnant and due in April with her second boy! We had a blast at their "Tom and Jerry" themed party, so fun.

Hannah did face painting of cats on the kids (Liam, Andrew, cousin Maddy)

Here is a blurry picture of all five of us, yes I was painted up to for the fun!

Liam LOVED the fun at the party.

Grandma and cousin Andrew got a snuggle. My dad is having open heart surgery on Monday so he made the wise decision to stay out of the germs. We missed him though.

Random picture from our children's church. I'm making a new 2011 resolution to volunteer once a month in children's church. I haven't shared that with anyone else, just because I'm worried Tommy will get sick and I can't serve, but I'm trying and for the last few months we have REALLY enjoyed it.

Merry Christmas and Happy New Year

2011-01-03T16:52:00.000-08:00

With love from your blog authors Sandi (aka Tommy's mommy) and Tommy!

And from all six of us! Hannah-16, me (42 yrs young), Tommy-4, Colin (turning 49 this month), Liam-4 and Nate-15 at my sister Deb's house.

Twins turn four (round two of pictures)

2010-12-30T16:08:00.000-08:00

More pictures! Tommy's face has scratches and a bruise from the bouncing with other kids, battle wounds! Cake and ice cream helped.

Cousins Andrew and Madison come helped celebrate.

Colin and I tried to organize the birthday wishes and cake.

Liam love the bouncy house and got so sweaty!

We tried to get all the grandkids together, but Daphne our friend is still in the picture, so cute!

Liam and his friend Mitchell. I just realized I'm missing our sweet friend Max from these pictures because they came later.

Me and Tommy, looks like I'm having more fun than Tommy.

Cousins Owen and Andrew and our friend Lexi at the very top. She was a daredevil.

Daphne and her dad playing air hockey. We have loved getting to know her family, they are very sweet and teach us a ton of sign language.

Priceless photo my sister took of Tommy first seeing the jumping houses. Hooray for me!!!

Lexi is having fun!

My sister Tami is pregnant with her second little boy, due in April.

Me and Tommy sharing a cute moment at Christmas but I had to sneak it in here.

Two little four year olds

2010-12-30T15:47:00.000-08:00

Tommy and Liam turned 4 years old! Born 12 minutes apart, on the twelfth day of the twelfth month.

My mom, Grandma Sue, made incredible cakes. I showed her Braska's elmo cake (one of our blog friends) and she got the inspiration for the cupcakes to spell their names and show their age). Liam's cake was a racecar track complete with cars which he LOVED. And Tommy (and his friend Max) really liked Elmo. Thank you Gma Sue for the amazing birthday cakes!

We had the party at the Jumparound Fun zone. Praise radio had a silent auction on their party packages to raise money for ministry. I bid on one of the packages and won it for half of the regular price. Woo Hoot! We had the opportunity to invite 12 of their friends plus family. Oh how we enjoyed seeing everyone.

Tommy and Liam's friend Lexi wore the birthday glasses well.

Liam at home with some of his presents. Daddy helped him build the Lego creation. Aunt Tami made the super cool roadway and car organizer out of fabric and it's very portable. Super cool idea!

Me and my mom had fun! I just love her so much.

My dad, Grandpa Bill and Nate talking. My dad is going to have open heart surgery (double bypass and repace the aeortic valve on Jan 10th, prayers are appreciated, my dad is 87 years young).

Racecar cake for Liam

Elmo cake for Tommy

And the birthday boy Liam really enjoyed presents!

I'll post a couple pictures of the twins jumping around at the party next.....

Believe

2010-12-30T15:34:00.000-08:00

What an incredibly fun and meaningful Christmas!

We had a snow storm... Hannah and Liam had fun making a 'snow storm' of tp. She really wanted a white Christmas.

We had presents, Nate enjoyed opening a special one from Grandpa Bill and Grandma Sue.

We had stockings, that were filled by santa.

And we enjoyed our sweet little Christmas tree.

We even enjoyed one little boy eating from a spoon his favorite new dessert, cheesecake.

All six of us enjoyed Christmas eve dinner here at home, yummy lasagna. I really wanted to go to candlelight service on Christmas eve but Colin was working and I ran low on patience. We opened one present each that evening. Then on Christmas morning four kids opened their presents and we all then went to Michael's house so Hannah and Nate could enjoy spending time with their dad. He had a fabulous breakfast of french toast and sausage. Afternoon was spent with my sister Debbie's family. As their Christmas gift to all of us, they heated their outdoor swimming pool and had a scrumptious Christmas dinner for about 50 people. Yummy and lots of fun seeing extended family we don't often see. The next day, we drove to Tacoma and had a fun 'second' Christmas celebration with Grandma Dorothy, and the kids' uncles. Liam and Tommy enjoyed opening presents this year. I read them the Christmas story from the bible on Christms Eve and we enjoyed the meaning of such a special moment of the year. Hope everyone enjoyed this wonderful day.

Chocolate on a stick

2010-12-23T09:02:00.000-08:00

Mmmm.

Warm up a mug of milk and then stir in one of these hunks of pure joy.

The dynamic duo and I made these for neighbors and friends. We made a triple batch of homemade marshmellows and they turned out extra yummy. Glad we had a few of just the marshmellows left over because smores on new year's sound delicious.

http://www.makeandtakes.com/hot-chocolate-on-a-stick

Encouragement

2010-11-29T12:53:00.000-08:00

What would I say to the prospective adoptive parents and caretakers of Baby Twin Doe who remains in the hospital in another state, born just weeks ago? I would share our story. A story that shares alot of health similiarities to their little boy. Our son Tommy is Twin A, and was diagnosed prenatally with probable Down syndrome and Dandy walker malformation of the brain. Our Twin B was perfectly healthy, just like theirs was. At twenty weeks gestation we were told Twin A may not be born. We were told that he may only live hours or days. What we didn't know was that he also had a complete AV canal defect of the heart, Hirschsprung's disease, polysaccaride antibody deficiency syndrome, severe sleep apnea and would need to live off of a feeding tube for a long period of time. What we didn't know was how little ALL of that would DEFINE who he is. He is an almost four year old boy with a bubbly personality and knows no stranger. He is quick to smile, quick to saddness and always quick in forgiveness. He runs, walks, climbs, hits, hugs, smiles, laughs, and cries. He looks at books and uses sign language. He eats. He loves. He has a lifetime. He is his own self just like all of our children.

I'm not going to offer judgment for the mom that chose life for her twins thru adoption nor the parents that chose to take the healthy twin and leave the struggling one in the hospital with a DNR. I try hard not to judge other people. I know how hard this is. I live this everyday. I believe in a loving God that will comfort and provide for all the people involved in this situation. He has a plan for all of us.

So when that state Ds coordinator called me to ask if she could share our contact information with the staff, the case workers, the prospective adopted parents, I smiled and said I would love to share the story of Tommy. It's a good one.

Grateful

2010-11-24T10:56:00.000-08:00

Happy Thanksgiving day tomorrow! Lots to be grateful for this year. Teenagers who are becoming good young adults, mostly thru trial and error, and they are both doing well! Twin four year old boys who stayed healthy this year and are growing in skills but both staying very sweet. My husband and I are still small farming and got to raise turkeys this year, see our farm thru a tragedy in the spring, and still come out better and stronger and thankful for each and every animal we are given. Grateful for a garden that produced almost 120 quarts of carrots, green beans, relishes and stocked our pantry with potatoes and onions and plenty of salads!

Making four pumpkin pies today (two of them weight watcher version), stuffing, and this appetizer: http://smittenkitchen.com/2010/11/sweet-potatoes-with-pecans-and-goat-cheese/

Most of all I'm looking forward to spending time with my mom and dad. My dad is an open heart surgery candidate and we are just so grateful for everyday with him! My sister Tami and her family (they are expecting their next bambino in April). Visiting my sister Deb and her family at a quick stop. And just plain relaxing and overeating. Hope everyone is enjoying this special holiday.

Two blogger mommies well worth the read

2010-11-20T15:29:00.000-08:00

I work near the county courthouse and on Friday (Nov 19th) it was National Adoption day and MANY kids were all lined up with their adoptive families ready to go before the judge and finalize their new bonds. Each had a huge bouqet of balloons and were beaming with smiles! Beautiful families made bigger on such a special day.

Of course the idea of adopting is always a glimmer in my eye so when I saw all this happiness in one spot it just reminded me again of the need and where my heart is. So when I was reading a couple of blogs after my two smallest were in bed, I got to thinking of those families who have chosen for their first children to adopt kids with Ds. I think every blogging mommy has an amazing story to share. These two are just so extra chromosomally cool. They both had family members with Down syndrome growing up and the CHOSE to adopt kiddos with Ds. Grab a cup of coffee and check out their families:

http://pudgeandzippy.blogspot.com/

http://confessionsofthechromosomallyenhanced.blogspot.com/

Liam's playdough

2010-11-17T18:49:00.000-08:00

Liam wants to share his playdough recipe with you. He knows you might already have it, but just in case!

3 cups flour
1 1/2 cup salt
3 cups water
1 T veggie oil
1 T cream of tarter
drops of food coloring or package of koolaid

Mix all together in saucepan and heat over low heat until your spoon doesn't move anymore. Take off heat and knead. Store in air tight ziplock. Enjoy! One of the colors he made is "steel". Total boy.

Today and tomorrow

2010-11-14T18:12:00.000-08:00

Today was:

Slicing and dicing 40 pounds of chicken breasts into many meals for the freezer

Planting a willow tree and four tall blueberry bushes (thanks to my sweet husband)

Cuddles on the couch with twin small guys

Preparations for winter

Praise

Lots of laundry

Yummy lemon chicken with mushrooms

Tomorrow will be:

Encouragement to my dad during his heart diagnostic procedure

Travels with my sisters

Hugs from my teens (if I'm lucky)

Quiet time to read

Slow start to the week

2010-11-08T10:41:00.000-08:00

I have enjoyed a slow start to the week today. I had planned to join my sisters and mom at my dad's invasive heart procedure today, but that was postponed. So, I enjoyed a little 'me' time. Walked two miles in the beautiful sunshine! Enjoyed a cup of my favorite peach tea hot and slowly. Downloaded pictures. Folded laundry at my own pace. Caught up on some people's blogs and just putzed around the house after I got Tommy and Liam on the preschool bus. I could get use to this! I'll head into work this afternoon but also started the Lemon Chicken recipe in our crockpot ("Make it fast cook it slow" awesome crockpot book). And made a double batch of homemade laundry soap. If you haven't done this yet, run don't walk to the store and grab the three ingredients and some recycled bottles in your house and gett'r done. It's simple, a huge cost savings, and the smell of lemon meringue is irresistible. Here is a cute picture of Liam and cousin Madison on the lil 4 wheeler. They enjoy spending time together, it's very sweet.

Two things

2010-11-01T12:27:00.000-07:00

They weren't happy about the stroller.

But a restraining device of some sort was in order, Christ the King church hosted a "Trunk and Treat" and had THOUSANDS of people.

Blah, we don't do large crowds well.

Tommy never recovered.

Liam had a blast though!

We ended our evening with visting Hannah and Nate and Aunt Debbie's gang

Did I tell you we have LOTS of candy now?

And I'm on Weight Watchers :)

I love reece's peanut butter cups.

But I love my recent 13 pounds down even more.

What did you do for Trick and Treats?

What works for us Wednesday - Praying for orphans

2010-10-27T07:12:00.000-07:00

Rarely is there a day in the past two years that I don't review the pictures on Reece's Rainbow website and pray for the orphans with Down syndrome. Searching my mind and asking my family questions on how we can open our hearts and home to just one more. The conditions in the orphanages have been documented and the lack of foster systems in most of the countries leave these children with lack of any form of a family environment. Most of these children are transferred at age 4 to a mental institution where they eventually die. There are lots of babies and young children with Ds in the orphanages, lots. But my prayer and heart is with the older children. Below are a few that I thought would pull on your heart and perhaps soften it toward giving to an orphan.

Please consider donating to the Christmas Angel project at Reece's Rainbow. Go ahead, look at this link and spend some time there. Pray for one. Pray for all. "Every child has a gift, they are just unwrapped at different times". http://reecesrainbow.org/angeltreesponsorpage

These children are all older and heavy on my mind because they have been graced to stay longer in the baby houses of orphanages, but soon, if not already, transferred to the mental institutions. If you choose to give and pray to Reece's Rainbow, please let them know it's for their "Older Children". The donations go into a grant for the next family to come forward and adopt.

This is Chelsea. According to the Reece's rainbow: Character: cheerful, kind This sweet little girl is almost 3 years old. She was born to a very young, single mom at 34 weeks gestation. She had some minor pulmonary issues in her first days of life as a result of her preemie birth, but she is very healthy now! She was born with an open oval window which may have closed on it’s own.

Chelsea is affectionate, friendly, inquisitive child. She loves to hug and kiss. She smiles and laughs a lot. She is a pet in the group. She loves to play with dolls, puzzles. She is petite and gracious. She is active for a child with Down syndrome and can be strong-willed, get angry and weep if anything is not her way. But she can be easily distracted from a disappointing her thing. She cannot dress by herself and does not want to eat by herself. Her appetite is not very good. She is rather selective and does not like sweets. She is used to a potty, but cannot ask about it.

She started to sit up at 1.5 years of age, then started to crawl. She started to walk at 2 years of age. Now she runs fast, walks up and down the stairs, slides. She exhibits some muscle hypotony. She is delayed in her speech development. She speaks with syllables, but understands what is said to her and is obedient. To the question “where?’ she shows correctly her eyes, ears, arms.

Chelsea will be transferred in the coming year to a very remote part of the country, and will be *out of reach* for adoption. Hope someone will consider this beautiful child and give her hope for a future!

Boy, Born April 17, 2003

Brandon is very active, happy, and relatively high functioning. He is attending preschool classes and lives in a group of children with a wide range of abilities. He has a very happy personality and loves attention from adults. He plays well with other children and participates in group activities. He is healthy and making progress in all areas of his development.

Brandon’s social worker so badly wants him to have a family. She believes that he will do very well in a family environment.

From a staff member that met Brandon in April 2010: Brandon was very friendly, active and sought out our attention. He was very affectionate and laughed and played with us the entire time we were visiting his group. Even though he wanted all of our attention, he allowed the other children to interact with us as well and did not show any signs of aggression toward the other children. The caregivers had nothing but good things to say about Brandon and his development and they are very hopeful that Brandon’s forever family will find him soon!

Pure and undefiled religion in the sight of our God and Father is this: to visit orphans and widows in their distress, and to keep oneself unstained by the world. James 1:27

I wonder

2010-10-23T07:40:00.000-07:00

I wonder how Tommy can visit two separate emergency rooms in one day? His g-tube fell out during the night. Actually the balloon was still fully inflated and he must have rubbed his belly against our mattress (climbing in during the night). I was talking to my sister Debbie in the morning and thought I stepped on a spider but looked down to see it was his g-tube. Heavy sigh. Long story short, St Joseph ER lacked a credentialed anesthesiologist to sedate Tommy. When we got to Children's they placed a very thin catheter in the very closed stoma and every 20 mins or so they replaced it with a larger catheter thus dialating the stoma until they were able to place the 18 french mickey back in. We got to visit the radiologist and she said it looked good, their staff loaded Tommy with toys and stickers and we ventured home that night. I hope, soon, very soon, there will be a mini-Children's Hospital located within St Joseph. So that Tommy can still use the existing wonderful skilled st joe's staff, but we would have access to credentialed pediatrics in an emergency situation. Taking Action for Children and Youth with special healthcare needs is a group working toward this. Google the Whatcom County Health department and look at the notes, mission statement and passion that has been accumulating for the last 18 months. I think this next year will hold huge things for genetic clinic and speciality peds at the hospital. Fingers crossed.

I wonder how Liam can line up his cars and call them his family and name each of us as one of his matchbox cars. Pointing to each individually he says our names and all six of us are there. Two being towtrucks, one big and one small. He names them as Tommy and Liam. Tommy is the small one he says. Wonder twin powers.

I wonder how Hannah can cheer in 40ish cold weather. I wonder how Nate and I stayed to watch her last night. It was an away game, in Deming. I wonder if Colin's saturday job working on snowmobiles with his friends will be fun.

I wonder how I forgot yesterday was the ski swap and I missed a great opportunity to get gently used ski stuff. I wonder if Liam's hearing appt on Tuesday will show that he has a mild hearing loss. I wonder if my youngest sister Tami is feeling good with her pregnancy and I have been miserable about calling her. I wonder where my phone is. I wonder if the friend I had lunch with yesterday knows that she has greatly influenced some of my decisions lately.

I wonder what next week has in store.

Two weeks in review

2010-10-16T07:51:00.000-07:00

Remember those movie critics that would give a "thumbs up" or a "thumbs down" to a movie after they reviewed it? Well, I'm giving the double thumbs down to the past two weeks!

Homecoming for Hannah (Nate stayed home with me and played video games)

Hannah and Nate have been more than a handful lately. Nate made some risky choices and now we are engaged in some long term help which we hope has come at the right time. Many times the past week I have been brought to my knees praying for his safety, bartering everything I own and am to erase all that happened and return to the 'happy' point before all of this. But I quickly realized that we all make mistakes, God doesn't want to barter and healing process began the point we all fixed our hearts and minds on getting better. It's painful. It's humbling (I never thought I would be "one of those mom's" who's kid tried something). It's all about Nate now. The right, and most amazing people have been placed in our path on this journey. I can't even begin to explain who or how or why, but I'm in awe at every turn. Nate feels better. He is making some incredible decisions about which path he is choosing for this next year. Is it weird to say I couldn't be prouder, even though I was the most disappointed I have ever been?

Liam is having a blast at preschool. But his expressive speech has really taken a turn for the worse lately. So we are going to call WWU speech services this next week and get him connected to special help. He continues to be a really sweet little boy.

Tommy is loving preschool although *super* active there and easily distracted. He is still not pronouncing a single word. His signing is slightly improved but not many words there either. He is just so incredibly active running, jumping, climbing that he doesn't talk. The past two weeks have been frustrating with him because he can't tell me what's wrong or ask for a food item. I'm going to look into the point/talk system and WWU for him too.

Tommy ready for school

Hannah is cheering just for Sehome now and it greatly is helping with her stress level and mood. She is fourth from the left at the game last night where we froze. She hit a breaking point this last week with Running Start at college, High school and two cheer teams. It was ugly.

Me and Hannah freezing at half time

Perhaps the biggest "thumbs down" has been my dad's health. He was diagnosed few weeks ago with Aortic Stenosis and was termed a probable open heart candidate to get a biological valve as the replacement. He was to undergo two additional tests, one is done already and shows many of the arteries surrounding the heart also have calcification. The second test will be done soon and will show for sure what the extent of those arteries look like for either proper medication or surgerical options. My dad is 87 this year and is the picture perfect healthy man. If the surgery changes from valve replacement to bypass plus valve replacement he will probably decide not to do it. My dad has been the best dad in the world and a father for almost half his entire life. I just can't imagine him not healthy when he has rarely ever been sick and definately not needed many health related help over the years. Please keep my dad in your prayers. For continued well being until the next test is performed and for peace & comfort in knowing whatever he decides to do it will be the right answer.

Off to the pumpkin patch later today to turn the tide on the "thumbs down" review.

Dusting off the cobwebs

2010-10-11T15:44:00.000-07:00

I've decided, with a consensus of one because it is just me doing this blog, that I'm going to rename it and open my daily life to a more honest view of my heart. So, I might change the name again, I might change the background, I might make other adjustments, but I'm dusting the cobwebs off so I can talk about more than just Tommy, more than just my kids, more of our life. Be patient. It will be worth it I hope in the end.

Buddy Walk 2010

2010-10-02T19:02:00.000-07:00

Lots of fun this year with music, old friends, new friends, cheerleaders, silent auction, raffle, goody bags... the list goes on! Hannah and Liam.

Hannah and Alyssa with Tommy.

Nate, Hannah, cousin Mack, his friend Jeffrey and Alyssa.

Liam and Tommy on a lunch break!

Cooper and Tommy really enjoyed the bubbles!!!

I love this picture of Hannah, me and Alyssa

Tommy loves a good bird seed pool.

Daddy and Liam having a blast! As usual.

Children's visit for echo and communication journals to school

2010-10-02T18:37:00.000-07:00

I keep meaning to sit down and update the blog, but wow have we been busy. This is Tommy and Liam's second year at early intervention preschool. This year I made them new communication books for the daily back and forth information from me to teachers, nurse, SLP and/or OT. These worked fantastic last year. First of all, their teacher Mrs G is fabulous. And with all the information in one spot, I'm more likely to remember issues, SLP homework, etc. Aren't they just plain cute?

This is what last year's journals looked like with the information going back and forth.

We spent an entire day at Children's recently. Left Ferndale at 5:30am and didn't get back until well after dinnertime. Tommy had his regular 6 month echo on his heart and we met with General Surgery to look at his pending hyrnias and his G-tube. We also took candy to our favorite blood draw tech Hector. Daddy and Liam are very sleepy in the wee hours. Liam was allowed to keep his pj's on for awhile, so was Tommy but Daddy wasn't :)

We checked Tommy in at 7am for a sedated echo. Sedated because.... have you seen Tommy lately? He is a wild man of bursting energy and to stay still for an echo was just not his scene. So, he didn't actually receive the sedation until almost 9am (grrrr) and he was given 1000 mg of Chloral Hydrate (65mg/kg) and after 30 minutes of BEATING me and JUMPING and BANGING his head while his eyes were closed, I finally asked for another nurse to help me and expected him to fall softly to sleep...at....any....moment. The nurse assured me that 30 mins was about when most kids drift off. Well, the nurse practicioner needed to come back and Tommy received an additional 150 mg of Chloral Hydrate and after a total of 70 minutes of the most BALISTIC and WRITHING and HEAD banging and TOSSING and THROWING himself off the bed dozens of times with me catching him, and a total of THREE nurses... we finally watched Tommy absolutely... in .... one...split...second...drift to sleep. That is him below. Sleeping.

I'm in the opposite corner curled up..in a ball... twirling my hair.... sucking my thumb... teary eyed.

One of the nurses said it was the most "impressive" displays of a reaction she has seen in her nearly 25 yr career. I dared her to say "worse". She didn't. But she did tell Colin when he finally came to join us with Liam after their breakfast that I deserved a medal.

I won't allow Tommy to ever go thru that again. Of course he doesn't remember it because of the type of drug it was. But I know what happened. And we won't do that again.

The echo pictures were good enough to determine we don't have to go back for a year! The mitral valve still has a mild to moderate leak. But it's been consistent. And can probably wait until his teens or older to repair. Tommy celebrated with yogurt. I waited until at home to celebrate with something tall and cold.

General surgery was equally as great of news. The hyrnias are fine for now and just need to be watched. His G-tube looked great and we are caring for it just fine. The surgeon even offered to look at Tommy's undescended testicles in preparation for a visit to Urology in December. He didn't think we needed to do anything. So... the next year we have, drum roll please, no surgeries!

One really good additional thing happened that day, Colin and I rotated caring for Tommy so that the other one could take Liam into EVERY playroom in the hospital. We had a blast with Liam. Painting, coloring, walking, talking, playing with cars, the whole works. Very sweet one on one time with a very sweet toddler.

Back to school

2010-09-14T13:32:00.000-07:00

I'm here to admit I'm sad to say that Thursday will mark all four kids back in school. Anyone that knows me knows that I'm an easy crier as it is, but when the kids have their supplies packed and their new clothes on I'm a big cry baby! Time is just flying by too quickly.

Tommy & Liam got a late start with the Ferndale strike, but the teachers unanimously voted to accept the offer and preschool will start on Thursday, we love our teachers. Hannah is a junior this year splitting her time between Sehome HS and WCC in running start. Nate is a sophmore and is starting to enjoy attending his first year at Exporations which is a small independent school and has already been on a camping trip with and it almost has a homeschool feel to it. Four very different school schedules to keep track of, plus two cheerleading calendars, google calendar will be busy with our family.

So with kids back in school my attention is turning to volunteering. The 7th annual Buddy Walk for Down syndrome outreach, is on October 2nd at 11am at the Fairhaven Village Green Park! Last year I spent some time organizing a piece of this fundraising event, the silent auction. This year I'll put some more time to this wonderful event that also brings so many beautiful families together.

Next, if you want to "Learn What’s Happening to Strengthen Services for Children and Youth with Special Health Care Needs and their Families in Whatcom County" -- Community Meeting Friday, September 17, 2010 11:30 AM - 3:00 PM Bring Your Lunch Beverages Provided St. Luke’s Community Health Education Center 3333 Squalicum Parkway Bellingham, WA 98227
* Hear from guest speakers from Pope’s Kids Place and Children’s Village, two thriving programs that came about as a result of community efforts in Centralia and Yakima
* Hear updates about progress being made by Whatcom Taking Action for CYSHCN, our own community’s group effort (I've spent not nearly enough volunteer time on, but thoroughly enjoy the direction and focus)
* Have a chance to ask questions of our guests from Children’s Village and Pope’s Kids Place For information about this community meeting, contact Margaret Jahn: mjahn3333@comcast.net
More information on events and comittees that lead to this meeting:

http://www.whatcomcounty.us/health/children/taking_action.jsp

And of course volunteering for the schools when I can. Usually, because I work, it's more of volunteering on projects that I can do in the evening, or chaperoning a field trip once a year.

Besides volunteering, fall has brought Colin & I to sign up for a back to school class. We saw the title at Sunday service, "Joy of Marriage" and looked puzzled at each other. What? Joy? Granted we have plenty of joy in our marriage but often it's also stressed and pulled and reprioritized and forgotten. Go ahead, laugh at us. Our first small group meeting is this Friday and I'll let you know how the class goes and if we get a little more "joy" put back in our hearts. God has great plans for us as a couple. I know this. Colin knows this. I'm thinking this might become a class PLUS date night. We deserve it!

Tommy's Story at OneTrueMedia.com

2010-09-07T16:27:00.001-07:00

Join us October 2 Saturday at 11am at the Village Green Park in Fairhaven for the 7th annual Buddy Walk in Whatcom County.

Here is Tommy's first three and a half years to provide you a little incentive and motivation.

We hope to raise $500 for Down syndrome outreach of Whatcom County, come walk with us.

Photo and video editing at www.OneTrueMedia.com

Homemade laundry soap

2010-09-05T10:49:00.000-07:00

Since I'm mixing up another batch today, I thought I would write out the recipe for "Homemade Laundry Soap". It's safe for septic systems and HE machines. We have been using it since March of this year and have really enjoyed the lemony smell and how inexpensive it is!

1/3 of 5 ounce Fels Naptha soap, grated
1/2 cup of washing soda (not baking soda)
1/2 cup boraxo (20 mule team is just fine)

Have two 1 gallon bottles (we use well washed milk jugs) and a funnel for filling them. You will need 13 cups very warm water in these bottles.
Also 8 one quart squirt bottles (dish detergent type, water bottles, soda bottles) empty.

First step: grate fels naphtha coarsely with a cheese grater (we dedicate a grater to our soap making and don't use it for food obviously)

Second step: add grated soap to 6 cups water in a pan on stove (we dedicate a pot just to soap making and don't reuse for food) and heat medium low until completely dissolved.

Take off heat, add other ingredients and stir until completely dissolved, smooth and a little thickened.

Add hot soap mixture to hot water in bottles (3 cups of soap mixture plus 13 cups of warm water = 1 gallon)

Mix and while still quite warm pour into smaller bottles. It will "set up" as it cools. Then it will dispense smoothly through the squirt bottles or you can shake them a bit to break up the gel. We stopped using the squirt bottles due to the volume of laundry and just use the gallon jugs. We actually make a double batch of this recipe each time :) Use 1/2 cup per load.

Enjoy!

A simple day

2010-08-28T09:19:00.000-07:00

We are setting up the slip and slide for all three boys to stay cool today.

Making some of these because my zukes are on! http://thepioneerwoman.com/tasty-kitchen-blog/2010/08/great-zukes/

Thankful that after a few discussions with Children's we are all on the same page for a sedated echo on 9/23, Tommy's six month echo appt won't be a wrestling match which I'm so thankful for my tiger to be asleep for. I decided to postpone urology consult until December. Quite frankly, it's just a big conversation about his 'stuff' and I think he just needs a period of time right now to make progress before more medical procedures that could set him back again.

Looking at four different school calendars and gathering them up today. Ideas on organization for that are welcomed. I'm thinking about google calendar because I'm fortunate now to have a smartphone. Perhaps a half day data entry session for everybody's school calendars and then I'll be more able to see at a single glance who is where and when. And of course with my work calendar.

Hannah has fundraisers all weekend for both cheer groups. She is so busy. Last night we watched her cheer at the HS football scrimage game and she looked great. Memorized 100 cheers. And is an athlete with many of the stunts and hurdle type jumps. I've enjoyed leaving her notes here and there to put a smile on her face.

Nate has been an enormous help to me both physically with the ankle biters and emotionally. He is a teenager. Typical. But I'm here to tell you he is the best big brother *ever*. Now that his cast is off and a splint is on, he can play bass guitar again. We've gone on evening walks to see the beaver at the preserve and enjoy the colder evenings.

Liam is full of new ideas lately and initiates 'conversations' with Tommy more often. When I mention preschool again and the names of his classmates he gets very excited.

I'm going to garden today after milking the goat and feeding the turkeys. Colin is fixing the van and truck today, various small projects for him.

Just a simple day. Enjoy!

Big Sky Country.... and peaches and our county fair

2010-08-22T13:16:00.000-07:00

I think I'm a potential winner for most neglected blog :)

Let's see if I can update everyone on our Montana trip. Hannah couldn't join us this year with all her cheerleading practices and we missed her lots! Nate, Tommy, Liam, Colin and I had fun though. I only felt a couple of moments of "i'm overnumbered by boys"... usually those involved sights of bugs, crawfish, body odor and rock/stick collections. All in all, we had a very relaxing time this year, ten days of camping.

We are blessed to be able to join Colin's family every year and most of his cousins and spend time together. They are all wonderful people who immediately help us feel at home. Sincerely thank you!

Nate taught the boys which rocks had crawfish under them.

Lots of relaxing moments!

Our trailer is six years old now but still we find it meeting our needs although Nate was way to tall for the bunk beds this time. We pull in next to the cabin because usually it is full with Colin's mom, brothers and our nephews.

Dogs rest in a crate outside the trailer. The trailer gets very small quickly with two boxers and five people.

Young love.

Daddy's arms full.

Nate and his cousin Danny on the intertube.

Liam loved the responsibility of flag boy.

Nate and Danny trying to tell uncle Bruce that he needs to go faster.

Mommy with her arms full.

Nate inside the cabin relaxing.

During the family reunion one of the moms taught us how to make lefse.

Liam REALLY enjoyed his second cousin Kahn.

Nate absolutely would have been on these jet skiis 24 hours aday.

The moon before we enjoyed our bon fire on the last night.

Before you send me an email saying how tired I look, this was ten pm (which I usually hit the hay around 9pm) 9 days into camping, and I had two rugrats on my lap in front of a fire. Yes, I look a bit exhausted.

On the drive from Montana back to Washington, we found peaches! And some nectarines. Which turned into a four step process because I simply love my mom's canned peaches.

Step one. Organize and sort. Ripe ones go first.

Step 2. Water bath.

Step three. Admire some nectarines. And make sure all are sealed (you can hear the seals pop)

Step 4. Wash the jars once cooled to get all the sticky stuff off.

The end result was two dozen quarts. Yum. I always like to think of what the winter days will be like while I'm canning. Will it be a foot of snow? Or will it be just a cold and rainy day? Will there be a northeastern from the Frasier valley in Canada coming down? Whatever the weather, we will have some canned peaches for dessert.

We really enjoyed visiting our county fair. For eight years we had participated with Hannah and Nate in 4-H activities and camped at the fairgrounds. This was the first year we went without obligations. And we kinda didn't know exactly what to do.

Liam found plenty to do. Tommy hated the rides! Hannah and Nate went to the fair on different evenings with their friends and had fun too!

Do you ever enjoy a picture intensive post?

2010-07-28T22:34:00.000-07:00

This might be my most picture intensive post yet! I'm sure you will enjoy seeing how these last couple of weeks have been spent. Hannah has participated in a few fundraisers for both of her cheerleading teams. We have washed cars and had a pancake feed! Both were fun and she is doing an excellent job memorizing the cheers, chants and dance routines. Go Hannah! In the above picture she is chatting with Grandma Sue and her cousin Andrew.

Daddy brought all three boys to the pancake feed which was a testament to patience since I was flipping cakes.

We visited the dentist for our routine checkups. Liam was so excitedto pick this fish out of the dentists' toychest.

Tommy has been full of joy and energy. He is back on antibiotics and eye drops plus nebulizer, but his allergies are not slowing him down!

Beautiful things are blooming. In more ways than just this. Our family is changing, teenagers growing into young adults, twins getting closer to four years old, and mommy & daddy planning for the next 3-5 years of small exciting changes. More to come on that soon as things become more clear for us.

My sisters and mom and I enjoyed a girls FABULOUS day out. We ate at a tapas bar and it was so delicious. The sparkling wine was perfect for a summer day.

We enjoyed manicures and pedicures and hours of conversation and catching up. Even though we live within 90 minutes of each other, our lives are just so full that we need dedicated days without our kids to visit and enjoy each other. Ahhhh, pedicure.

I'm not sure why only one foot is in the picture, I was probably shoo-ing someone away with the other foot, but isn't that just so cute :)

That same day all of us girls went to do "fused glass" at the local pottery place. My sister Debbie had seen this and we had a blast cutting glass, sprinkling glass and arranging rock like or tile like glass atop items. This is the 'pre' look, and when we get the pieces back I'll post what their finished look is like. This was so much fun.

My sister Debbi the artist!

My sister Tami the artist!

Yes, I have been working. But I really enjoy spending my summer away from work!

We have been loving the beach even after dinner we will go down and watch the water

Nate's poor broken arm kept him out of the water.

This is the momentous photo of Tommy holding his own ice cream cone.

Which is a HUGE deal.

Usually, the routine would be mommy gives Tommy cone, Tommy screams, Tommy throws cone on ground OR mommy quickly grabs cone from child throwing fit and holds cone to feed child... her arm falls asleep... her own cone melts.

But now..... mommy handed cone to said child and after he fed his chin for awhile.... wala... he now holds his own ice cream cone. HUGE. Okay, I now realize this photo means more to me than anyone else reading.

I think he is still thinking of his ice cream cone here.

These two are remarkably close lately. In looks and in all they do. Driving tractor around the farm, sharing favorite foods, enjoying lots of cuddles. Too cute.

How was that for an intensive photo post? Geez, I hope this uploads okay....

I don't have Down syndrome all the time

2010-07-20T10:07:00.000-07:00

I saw this on a bulletin board that we belong to "Multiples with Down syndrome (one or more of the twins or triplets have Ds)". I'm not sure how to give proper credit to the author, but to state that this is copied from the post of someone else and the author's name is listed here for his book (this is not my story, copied from someone else because it's wonderful). Need to find the title of the book though, it sounds fantastic:

Dave Hingsburger is an advocate for those with disabilities and gives presentations on this topic fairly often:

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.
..............

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

Never a dull moment

2010-07-15T17:36:00.000-07:00

Yesterday afternoon Nate was longboarding from a friend's house in the York neighborhood to meet me at work and get a ride home. My crazy 15 year old son wasn't wearing a helmet and gravity ultimately won during a small downhill battle. He broke his right arm. Both a fracture of the distall radius and a buckle fracture of his ulna. His endurance of pain was amazing. At the ER for four hours he never cried and was really hanging in there (although I would have totally understood crying). So he is splinted and well medicated and resting. Lots of dvds. No swimming. No bicycling. No guitar playing. No longboard (guess that was understood without writing it here).

So, onto today.

Twins to the dentist (appt scheduled six months ago). I cannot adequately describe the sheer decibel level involved with taking twin three year olds to the dentist. Honestly. The scrubbing of the teeth and the fluoride and sealant stuff was applied and then.... the pediatric dentist recommended orthodontics for pulling in Tommy's lower jaw from his 'bulldog' appearance. Hmm. The dentist said that at about six years old would be a good time to do it. If you have older kids with Ds let me know if you have ever corrected this, I can't imagine doing something like that for Tommy. I mentioned to her that I didn't want to do something 'cosmetic' because in my mind he is perfection! But she seemed to think in the long run his jaw would be harmed if left alone.

And then the day got worse.

I called Urology at Children's and explained our pediatrician wants them to look at Tommy's undescended testicles and his very boy part which is still fairly tucked up inside of other skin. Since our pediatrician explained the risk of testicular cancer is higher if left up in that 'warmer' environment, I'm not sure we can decide not to do a surgical procedure where the testicles will be brought down. Hmmm. Help. Anyone out there done this? Sorry for too much information.

I'm going to absolutely relax tonight and give myself some space. Need DULL moments folks. :)

The rose city

2010-07-13T18:17:00.000-07:00

We had a great time at the family reunion in Oregon.

We had the opportunity to stay at my aunt's home and spend more time with her and got to see cousins and their families.

Most important to me was a weekend to spend with my mom and my sisters though. We love each other so much and wish we got to spend more time together so it's always a special time when we see each other. Life is just so short there never seems to be enough time to visit with the people you love.

My aunt has a beautiful home and this was the great sandbox that Liam and my niece Madison loved. We all had a blast at the playground next door too.

I love this picture of Tommy asleep after overdosing on cheetos! And my sister Deb taught her daughter Madison how to do the monkey bars. BIG accomplishment Maddie

My mom and my sisters!

My aunt and cousins organized a time and purchased beautiful flowers, so we could go and visit our grandparents and great aunts at the cemetary. It was really special to me to think of how much my grandma would have enjoyed to know that we are all healthy and happy. She had eight granddaughters and we held a sweet place in her heart. Oh Grandma you were probably looking down at us with a big smile.

Cousin Andrew cleaning up!

Twins at their "well" child visits

2010-07-08T18:09:00.000-07:00

Today at ages 3 1/2 yrs old, we finally made it to our three year old well child checks. As usual the twins were full of joy and energy and kept Colin, me, the doctor and two nurses hopping! In general things are good and we are growing quickly and progressing a little slower than most. But it's our "own" rate of progress! And we just love them so much.

Here are the specifics of things mommy needs to do:
Liam needs to see the ENT and have his two year old pe tubes reevaluated, and he needs to see audiology at WWU to be reevaluated for mild (or maybe moderate) hearing loss. This tank of a toddler is 40 pounds and 40 inches tall 95% for height and weight. We build 'em big on the farm.

Tommy is our slight little fella at 33 pounds and 37 inches tall. His appts need to be scheduled for: urology review (oh joy another dept at Children's, Amy I need some advice/help on this, and if anyone else has down south experience), Thornberg for eyes again (delayed visual maturation), allergy doc for annual review this fall, pulmonology to check in about synagis again this year and possibly their thoughts on coming off of prevacid gracefully, labs sometime for thyroid and blood culture, cardiology is scheduled for september and so is f/u on clogged tear duct placements. We also need to get back on the pulmicort nebulizer twice daily. grrr. Tommy's height is only 10% on the Ds chart but he is slightly heavier and fell just under

The boys both got caught up on their vaccines which meant only one shot each! Yippee (although they didn't think so). And the boys gave the dr and nurses a big batch of homemade soft oatmeal cookies as a 'thank you' for assuring them such a healthy start :) We have the BEST dr and nursing team in the world.

Interesting that our dr recommended liquid vitamin daily (containing vit D) and fish oil liquid. There are so many great studies out on both now, so this will be a new routine for us but we are going to start taking our vitamins. Does everyone have their kids take daily vitamins? I hadn't with my two oldest, so I wasn't sure.

Growing

2010-06-27T21:07:00.000-07:00

Summer is starting to grow.

And look a little better than all the rain.

Small people are growing too.

And playing together.

Tommy and Liam are growing so much lately. Liam is making progress (slowly) with speech. Tommy is saying an 'almost' intelligible 'thank you' which is his third word! 'Momma' and 'dadda' were his first words but those are infrequent now.

Hannah and Nate are on a 10 day road trip with their dad to Mt Rushmore and so far their facebook pictures look like lots of fun! Although I miss them terribly.

Summer. I'm glad it's here.

I'm a winner!

2010-06-26T13:15:00.000-07:00

Our sweet friend Braska (her name is over there to the right "Nebraska") chose us as the winner of a blog makeover! I was so impressed though with her verbal skills that I had to watch the video again just to be sure I won. Yipppeeeee! Tommy's blog needs a sprucing up. What do you guys think... a blog with bannanas (which he treats as a food group)? Boy colors? Yellow, orange and red are his favorite colors. Hmmm. This is bound to be fun. Plus Braska's mom RK is super talented with computers and just been so helpful to us with Gtubes, ng tubes and persnickety oral aversion stuff over the past three years this will be FUN!

Not sure....

2010-06-22T20:07:00.000-07:00

About the only thing I'm sure about is I was working today, going over some financial information with some other staff and then the weirdest scariest feeling of almost passing out happened. My head hurt really bad first, then my entire body felt like warm tingling waves coming and going. I just sat in a chair for awhile and tried to figure out what was happening. I thought I was having a stroke or something. Nothing has happened like that before. My arms were really hot and then my legs got warm...... and then all of a sudden I was cold and shaking and layed down on the floor of the conference room we were in. My wonderful friends at work and I decided after a bit of high blood pressure and the feeling not going away.... to take a little ambulance ride to the hospital. Not to worry, the ct scan on my head was nomal. And this evening I'm home and typing this and enjoying a strawberry pie from my sweet neighbor Nora. All of my kids this evening gave me big hugs and we realized once again how fragile life is and to live each day to the fullest!

And more on orphans.

2010-06-18T12:11:00.000-07:00

I missed the segment on the View tv show (because I'm working today), but I'm so glad to find this thru my friend..... and glad to hear what this mommy "would have wanted to talk about".

http://www.rageagainsttheminivan.com/2010/06/what-i-wanted-to-say.html

So, while Hannah and Nate and I look into the possibility of both of them at new school settings next year (Hannah is testing into running start at our community college, Nate is interested in Explorations HS).... and Tommy & Liam are changing at the speed of sound, there are *so* many orphans in the world that need permanent families. Families to help them figure out education options. Families to love them. Families to feed them. This is an issue so heavy on my heart each day.

Adoption of kids with Down syndrome

2010-06-14T12:45:00.000-07:00

Want to see two cute faces? Reece's rainbow, the international adoption group for boys and girls orphaned with Down syndrome has some wonderful families that just met their new additions:

http://urbanfunnyfarm.blogspot.com/

http://savingsofia.blogspot.com/2010/06/gotcha-day.html

Oh what happiness for those families. The site for Reece's rainbow is on Tommy's page to the right. What a wonderful group of folks making a daily difference. Isn't that what life is about?

Two surgeries

2010-06-09T16:34:00.000-07:00

Hannah had surgery yesterday. A laproscopy to help diagnose endometriosis. A sample was taken from the only site they found that seemed to be a problem. Her bowel was adhered to the perinial lining thru a spot/adhesion that seemed to be endometriosis. This could be the reason for her pain. The adhesion was removed and the bowel was freed again. A sample was taken from the site and in a few days we should know if it was endometriosis. Regardless, we will start seeing a chronic pain counselor so that Hannah can hopefully manage the pains with minimal medicine but rather with a healthy diet. She is recovering so fast! And was even back at school today. She has struggled with this pain for two years and hopefully we will soon know a diagnosis.

My mother-in-law Dorothy had open heart surgery today to correct a mitral valve defect and get her out of A-fib. According to my hubby who is there right now, it was a 100% success. Which is wonderful for Dorothy! And for us because we just *love* her.

I had taken the day off today to help Hannah but when she wanted to go to school at about 10am, my day turned into:

post office
two banks (mine and ptsa)
gym (including a hot sauna)
grocery store (16 cent tomato plants on the clearance gardening shelf at Haggens)
consignment store (found the perfect pair of water shoes for Tommy's chubby toes)
haircut and styled (mmm)
verizon store to port my contacts to another phone
cleaned my van
got ready for my baby turkey chicks coming tomorrow (sawdust, heat lamp, etc)
called life insurance company about Tommy having Ds and coverage (he is 100% guaranteed)
called home health place in seattle AGAIN about diapers for Tommy that are hypoallergenic
got horse clippers ready to take to my sister this weekend (she has a horse and we don't anymore)
made goat cheese with sage and rosemary garlic oil (wish I had wine in the house to go with that)
bought teacher gifts for last day of the twins preschool tomorrow (coffee cards)
cleaned refridgerator
did a couple loads of laundry
healthy dinner: lowfat turkey sausage, steamed mixed veggies and skinny cows for dessert

I cannot even believe I did all that. Tommorow back to work ;)