Family reunion

I spent this past weekend in Portland at something called a family reunion. I had lots of fun, and so did mom and dad. Hannah was involved in some of the preparations and did a great job. My great Aunt Elizabeth and Uncle Michael in Portland hosted the reunion on Friday evening and it was nice! This picture is Hannah and our great Aunt Elizabeth. They are in front of a beautiful poster that describes how our great grandma was one of a dozen kids!



Here is mommy (in the floral) with daddy in the blue and her cousin Julie with her hubby Don. Mommy enjoys spending time with Julie. Later during the reunion, mommy met cousins that she didn't even know she had!







This is my great grandma's wedding dress, veil, shoes and wedding picture. It was precious! Mommy didn't let us get close to here though.








Grandpa Bill and Grandma Sue had fun too!


And Liam found a really cool house to play in.

A busy yesterday

I went in mommy's van to Children's Hospital yesterday. It was just a check up for a study we volunteered for. My big sista Hannah came with us too, which is always nice.

Mommy sat me in something she calls my car seat, but I call it the "sleep machine" .... one moment we were leaving Bellingham, and the next we were in valet parking at Children's!


When I had my open heart surgery a year ago, the doctor's at Children's routinely threw away the thymus gland because it sits in front of the heart and just kinda 'gets in the way'. Well, a certain doctor started looking at replacing a piece of the gland, or the entire gland as a way to improve immunity in us kiddos.

Daddy and mommy were skeptical at first, and so worried about the open heart surgery itself, they just didn't know about volunteering their wee precious me for this opportunity. But then they realized it was an opportunity, one to improve my health. So, it's a double blind study and no one involves knows if I received part of my thymus gland (well, mommy says it's recorded somewhere in that big ol' hospital) but the nice pediatric research folks don't know. So, we turned in our daily health journals and got a blood draw. It was flawless! One poke and they got their red stuff. I cried a little more than mommy did :)

After we left that department. We stopped by to visit another family from Bellingham who are inpatient. See they have twin girls (super cute ones!), and they have been in Children's even more than I have been. We think about that family alot. Our paths have been similar in many ways.

Then off to Grandpa Bill and Grandma Sue's house. Mmmm, dinner! Turkey sloppy joes and a dreamy jello/pudding dessert. Cousin Andrew and Aunt Tami were there for dinner too!












A good, but long day. Tomorrow.... it's off to get sized for my Jump Starts!

A chart and description for poo

A dad of a kid with Hirschsprung's disease found this online. It is sad that I was ECSTATIC to find that someone has placed labels and definitions for poo. Much better to call the doctor and have a "scale" rating rather than almost gag myself with descriptors. Enjoy!

http://en.wikipedia.org/wiki/Bristol_Stool_Scale

Fourth o' July

Even though I was a CRAB, I enjoyed swimming in the water at Aunt Debbie and Uncle Rob's house.

My brother Liam had a good time. Our cousin Maddy is swimming without water wings!













We played with playdough for the first time. Although mommy didn't take any pictures.... I ate the blue playdough. She wasn't watching me to good, she was talking to aunt Debbie, and then I crammed the blue playdough into my mouth. I was drooling blue slime :)



Aunt Debbie made a pretty dessert, and I LOVED IT!! I shouted at mommy when she forgot to feed me. My cousins Gabe and Maddy liked it too!







At the end of the day we went to Aunt Shawnee and Uncle Ray's house to watch fireworks. Didn't like em. Nope. Too noisy. But I did like the food that Shawnee made! Brother liam is on the lawn tractor getting tickled my Uncle Robert.

Mommy says she hopes that I get over my crabbiness and being Mr. Clingy. If not, she is bringing back the baby sling and she is going to start toting me like a baby again.....

New stuff

I've got a bunch of new developments!

First, I decided to crawl up the stairs. Yep. I wanted to follow Liam upstairs to our bathtub and mommy seemed to want me to crawl up them stairs ... so up I went. Now I only went up three stairs and there are about twenty or so all together.... BUT I CRAWLED UP THREE STAIRS!!! Huge. Mommy was screaming for daddy to come and watch so I stopped :)

We met our Occupational therapist at a park today to work on moving around and fine motor skills. Our family resource coordinator came too! She helped us with a 6 month update. We really like both of them. I was a CRAB. Totally not cooperative. But Liam enjoyed playing there in the creek and with daddy!



Liam had fun with daddy while mommy and I learned some stuff from Miss S. and Miss J. Fun day in the sunshine.














And last but not least... we enjoyed our FIRST ice cream cone today. At the dairy, we said hi to the cows and then each had a .... strawberry swirl.








The last new development is that I get fitted for my Jump Start foot orthotics next week. Our OT noticed that my ankles pronate and I could benefit from them, so after we get those..... the shoe hunt begins for something that will fit 'em. We could benefit from anyone that has found shoes to fit Jump Start's. I really enjoy standing up and moving my feet around... someone keeps saying "walk" or "keep going with your steps".... no idea what they are talking about, I just have a new vantage point for toys. :)

Hirschsprung disease and a tummy bug

Last week Tommy and Liam were both home with a "tummy bug". This post is mostly a reminder to me for future reference, but also to take some time to share with others that might have babies or toddlers with Hirschsprung's disease. This is probably not a post that anyone else wants to read :) It is graphic!

As a sidenote, I will share with everyone that our washing machine had been broken for 3 weeks. Not what a family of six needed. And needless to say during a tummy bug! The amount of poop continues to amaze me. Stay tuned though, as we have a busy week with many appts and I'm sure I will post some pictures later this week. Now.... on to the poop conversation.

We have had problems with runny stools off and on now with Tommy's full 18 months of life. As he had lost 5 inches of his colon at birth, his colon is now shorter compared to a typical child. I'm guessing that he lost approximately 1/3 of his colon. At times the poop now varies from a thick pudding type consistency (very good) to water with little flecks (not at all good). So, I'll attempt to share with you what I have learned from the world of Hirschsprung disease to help Tommy through the "not good" types of poo. Every kid is different. I'm not a doctor, but I am a mom! :) This is just my own understanding of what helps Tommy when he is sick. Colin and I have tried many different things, and have found some to be inexpensive and very helpful. Others to be cost prohibitive and not even options that we could consider on an ongoing basis.

Pro-bi-what?
The first problem kids with HD have, especially when sick, is a very quick overgrowth of flora and fauna in their gut. Naturally, these organisms aid digestion but if too numerous they cause toxins which irritate the gut and this in turn causes production of mucous and runny stool. So, whenever we catch a tummy bug (or begin antibiotics for an ear infection) we immediately start probiotics. Tommy has had five rounds of antibiotics this year, and probiotics is an affordable way to bring his gut back on line. For the first few days, I double the suggested child's dose. The dose depends on the type of probiotic that you purchase, just double it. I don't use yogurt at all when Tommy has tummy troubles as the dairy is usually too much for his gut to handle. I switch to a pedialite type liquid for at least 7-10 days and add the probiotic to his gtube feedings. I have heard of others that buy probiotic capsules from costco and just break open an adult dose capsule into their child's bottle of pedialite.

Red bum
Fungal overgrowth also causes the red spots type butt rash. Rash so bad that it on occasion bleeds. So whenever we have this rash we treat it with Illex (very expensive tho). On occasion we use nystatid or a mycostatin oral suspension for thrush. You may want to get some medical advice, although it's over the counter. We use close to the maximum dose, but only when there are symptoms. Usually Liam has gotten thrush first and then we medicate Tommy also just to make sure. Other butt pastes that work include aquaphor and a special mix from our local hospital (which I have begged for again to no avail). This past week I went to Hogland pharmacy for our weekly compouned medication run and purchased the disposable bed 1/4 sheets (15 sheets for $3.50 and they are large) and placed Tommy naked on them to air out his red bleeding bum. Much thanks to my sister Deb for this idea as it worked well and cut down on the amount of laundry. Simply wad up that disposable sheet and away you go!

What to feed the prince?
Bacteria and fungi thrive on sugar. When Tommy has a tummy bug we try not to feed him fruits, no dairy, no yogurt, no cheese. After a few days of fairly solid poo's then we slowly transition back to milk and yogurt. We do give Tommy pastas and small quantities of a protein such as chicken; chicken noodle soup is great for a tummy bug in a kid that has HD. No beef! All the carbs you want though. And nothing like beans as the gas that they create has no place in a kiddo with HD.

Spa treatment
Baking soda baths. Four or five times a day help out the red raw bum. This is wonderful for Tommy as the baths always perk him up and the baking soda helps alot.

Miralax and Senna
On an ongoing basis, when Tommy is healthy, we need to manage the amount of time that stool sits in the gut and reduce the chance that bacteria can grow. The overgrowth of bacteria then causes the lining of the gut to swell and then stool is harder to pass. Pooping at least once a day, is a requirement for Tommy. Preferably, he has a dirty diaper 2-3 times daily. If you ever babysit Tommy the first question you will be asked is "did he poop?". Cleaning out a kid with HD is important. It greatly effects his interest in eating also. The more regular he stays, the more interested he is in oral eating.

So, hope that wasn't too graphic. A post about poo. I should get an award for the dirtiest post :)

Saturday sunshine

I took my first ferry ride! We rode to Lummi Island for a BBQ. I was hot, hungry and in general a CRAB! Not too many cars fit on this little ferry.


Look closely, I have a little smile... the only one ALL DAY LONG.










Daddy and Liam walked down to the beach. Mommy was sitting at the BBQ with me SCREAMING (I was screaming, not her). I didn't like the sunshine, I didn't like the way she held me, I definitely didn't want to be sat down on the ground, I was hungry but didn't want to eat.... Mr. Grouch I was!




My little brother Liam got to sit on a tractor today. We went to a strawberry farm first thing this morning to get those juicy red berries.....mmmm. Lil' brother you look good!