Friday, July 22

Improving Care for Children with Complex Needs

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.

Thursday, July 21


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 :)

Wednesday, July 20

Grange hall talk

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.

Thursday, July 7

Summer reading program

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.

Wednesday, July 6

Summer is finally here

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!

Tommy Adventures