Opening day of fishing

Aunt Debbie with Liam at Silver Lake opening day of fishing.

Although Tommy can't hold a fishing pole yet.... he enjoyed sitting around the campfire with family and friends. Grandma Linda is snuggling with Tommy.

DsO new baby afternoon

Tommy enjoyed meeting new friends at the Down Syndrome Outreach new baby reception. Mommy/daddy liked the sunny afternoon and getting acquainted with friends. Tommy really enjoyed meeting Kristy again!

Yummy

Dad and mom learned about my new feeding pump today. It is SO much better! My feeding bag can be lower or higher than the pump, no more gravity needed to get it started. Can you say yummy in my tummy? After I get my heart fixed this nose hose is coming out! But until then, the new pump helps alot.

And the winner is...

Big sister Hannah won a themed baby basket at the Whatcom County Youth Fair.... baby brothers Tommy and Liam were happy to see their prizes! Baby blankets, baby bath towels, more oils/lotions and just plain fun baby stuff.

Mending Tommy's Heart

We have a date to 'fix' Tommy's heart, June 13th. Please include Tommy in your prayers for the next seven weeks to stay healthy. I have included information here about his AV Canal defect, the nutritional needs we have struggled with and how the defect will be fixed. Our consult with the cardiac surgical team will be June 8th but from what Colin and I understand so far, this is open heart surgery and Tommy will be on bypass for up to eight hours. Hopefully this information is helpful for your understanding of Tommy's heart mending surgery.

http://www.lpch.org/diseaseHealthInfo/HealthLibrary/cardiac/avc.html

No NG tube for me, thank you.

I pulled out my NG feeding tube twice in the span of four days. Mommy and Daddy are getting pretty crafty with the tape to try and stop me. Daddy couldn't resist taking a picture of my face without the tube (the tape is still there though). After I get my heart fixed I'm hoping to be rid of that nasty thing! Look out bottles!

Mr Big Mouth

My mouth is enjoying lots of new textures. I'm trying to decide if I like the textures more or mom/dad's weird faces while they are helping me. I guess it's all fun!

Whatcom County Youth Fair

Last weekend I enjoyed hanging out with my big siblings Hannah and Nate at the Youth Fair in Lynden. Liam came too! So did a lot of our cousins. I got to meet a Llama! All the fresh air was wonderful for me and Liam.

Occupational Therapy

What a fantastic therapy appointment today! Mom is so jazzed that the therapist got me to take a pacifier. We also played on our belly and worked on midline positioning more. The best part was brother Liam stayed behind so it was just mommy and me! We ended the session where we started - in mommy's sling.... boy was I cuddly in that!

Easter

Tommy and his younger twin brother Liam enjoyed Easter. We traveled to Grandma Dorothy's house, with older brother Nate and sister Hannah, and she made a delicious Easter dinner. Grandma Sue and Papa Bill came too! Younger brother Liam looking funny in his Easter bunny ears.

Here I am with a BIG smile for my mommy

Brother Liam and I are showing off our spring outfits, mommy these are too chilly!

Liam had to get in one more smile

As background...

Thomas McMillan “Tommy” and his twin brother Liam arrived in our family on December 12, 2006. Tommy was born enhanced with Down’s Syndrome. Much more seriously though, within a few hours of birth it was apparent that something was wrong. He hadn’t passed any stool and he was vomiting bile. Although it was a windy day and the helicopters couldn’t fly Tommy to Children’s Hospital, a team of 6 wonderful nurses and staff drove in an ambulance from Children’s to Bellingham to transport Tommy back. Our stay at Children’s Hospital was three weeks long with another week admission a month later due to colitis. During the first few days in ICU Tommy was diagnosed with Hirschprung’s Disease. This is a disease of the large intestine where during fetal development, the ganglion cells don’t migrate all the way through the intestines to the rectum. Essentially the intestine is contracted and won’t allow anything to pass (peristalsis doesn’t occur). Tommy underwent a six hour surgery called a pull-through repair. He lost 5 inches of his colon. The surgeon saved Tommy’s life. The nurses, dietician, occupational therapist and surgical physicians were so gifted with their talents that Tommy not only survived his surgery, he is thriving!

Children's Hospital Fundraiser

We are happy to have an opportunity to support Children's Hospital. We would LOVE your support during our participation in the 20 hour scrapbookin' fundraiser. I have tax deductible receipts and am asking friends and family for $20 pledges. All for Children's Hospital. Here is the guild website:

http://mightymaxwellguild.blogspot.com/

Doctor, Doctor!

Tommy visited our favorite pediatrician today (as follow up to our emergency room visit two days ago). This is the doctor that saved Tommy's life last December by identifying a GI issue, within hours of his birth, and sending us to Children's Hospital. Needless to say Tommy 'has eyes' for this guy. Our visit went well and once again Tommy is on the mend from reflux and an upper respitory bug. Mommy and Liam were happy to hear the good news! We all went to big brother Nate's baseball practice for some fresh spring air.