Monday, June 30

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.

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, June 28

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!

Sunday, June 22

5 step process

This is a long time in the making, I just couldn't convince my left leg to tuck under my hip so I could turn around. Literally, this took weeks. Dad, mom, Hannah and Nate REALLY wanted me to be able to do this because often times I was left on the porch. I didn't mind it. But occasionally I would like to catch up to the rest of my family :) Now I can! I can go from the porch to inside the house in 5 easy steps.

First, the hands are gently yet firmly placed inside the house. This is a good point to drag a toy alongside too if you want to swipe something from the porch.

Step 2 is so huge I need to remind you of something.... I NEVER BEAR WEIGHT ON MY LEGS. So, when I finally learned that the only way I was getting into the house would be to raise my hips up and bear weight on my legs, well... another step in the process that took some convincing.

Next, the left leg comes up. ALWAYS the left leg first.

Note to self, step 4 is always a tad frustrating, left leg must tuck under my hip. Sometimes I rock back and forth to convince my left leg to tuck.

Heavy sigh. Sweet success. In this case I turned around for mommy to take a picture. But usually.... I keep on crawling into the house, usually the kitchen because someone is loading the dishwasher and they need help. They never realize they need help, but they always seem vocal about it once I get there and pitch in.

I hope you enjoyed the pictures as much as my mommy did!

Saturday, June 21

Summer Fun

Hello everyone this is Tommy's bis sister Hannah. Since my mommy hasn't updated the blog in "forever" I thought I would.

Now that Nate and I are out of school we have been so excited about this summer. There is a lot to look forward too! Although a lot of us Bellinghamers have been asking, "Where's the sun?". No kidding! I was looking forward to hot days with the sprinkler under the trampoline and creating Tommy and Liam's first lemonade stand. But maybe the sun will pop up next week. But until then I guess we will just have to cross our fingers!

Here on the farm a lot has been going on. Part of the grass got mowed today, people stop by all the time asking about our eight baby goats (which make twelve goats total!) Our little farm is becoming very busy! Liam and Tommy LOVE to go outside and bounce on the trampoline. Liam's favorite thing is to go out front into the five foot high grass and make tunnels with his big brother Nate. They look so adorable! Tommy loves to sit on the porch and play with trucks in the nice breeze.

Tommorow I am looking forward to going to a horse show. But this isn't any horse show. It is a benefit show for Chelsea Ebert's memorial scholarship fund. All of the proceeds generated from the three horse shows goes to a scholarship fund for graduating seniors. Big thanks to Jaime Nichols and Kelly Fischer who are putting it on. For any one who wants to come and check out all the different types of showing and breeds of horses you are very welcome to come watch. It starts at 8:00 am but I will be there (with my horse Mack) from about 11:30 onward (Lynden fairgrounds). It is amazing to see how young and talented some showers are. And this is an open show so there are showers of all ages!

Well, i hope everyone has a great summer! :)

~Big sister Hannah

Saturday, June 14

1 Year after Open heart surgery!

Today is my 1 year anniversary of my open heart surgery! We celebrated by joining "the human race" a benefit fundraising walk/run for many of our favorite local non profits. Whatcom Center for Early Learning and the ARC were our favorites!

Liam and I mostly hung out in the stroller while mommy and daddy talked and walked. It wasn't the sunniest day... but it didn't rain.

Thursday, June 12

Big sister Hannah graduated from the 8th grade!

We are so proud to say that Hannah is done with middle school and in the fall she will be in high school. Mommy went to 8th grade graduation tonight while us babies stayed home with daddy. Hannah looked so pretty! Good job sister.

Monday, June 9

Having fun

Mom, this strap is attached to your camera, you need to use it MORE and keep this blog up to date. I have been having lots of fun, staying healthy, and mom can't keep up with me.

Developmental playgroup has been fun, lots of toys and the teachers show me different things to eat and play with. These pictures are from last week, Liam and I stay real busy. Today we enjoyed rocks and driftwood!

Grandma Dorothy and her friend Wilma came to stay the weekend with us for a nice long visit. We had lots of fun together. We played outside with big brother Nate when it wasn't rainy and cold. We wish both of them didn't live so far away.

Tuesday, June 3

Nutrition and feeding therapy

Our feeding therapist Miss H met me at daycare today to work on feeding issues (mommy came to visit too). Part of my 6 month goals are to tolerate oral stimulation for 30 seconds, because, in the past I have HATED the nuk brush. Low and behold, I LOVED the cat/mouse Zvibe and the new surgical tubing to chew on. Loved it loved it!

Promise makes yummy homemade food, we had biscuits with hamburger gravy and mashed potatoes, green peas with carrots and applesauce. Yummy! After lunch mommy went back to finish her work and I took a long nap. zzzzz.

Our nutritionist called mommy this afternoon to work out my new recipe for daily calories. She isn't worried about my lack of weight gain too much. However, we are going to add a few calories each day to try and stay on the same growth curve. I'm 75.5 cm tall, so we are looking at a 14 calorie per cm amount per day.... that means 1,057 calories for the day. Should be pretty easy to do. Our latest food journal had one day at 996 calories and the other day at 1,493 (gee whiz mom what kinda full fat stuff are ya feeding me?).

Sunday, June 1

A fun Saturday

On Saturday, we had a fun time. Daddy needed to go to work. So, mommy took us to the BIG park in Lynden (Million Smiles) and we had lots of fun on the swings and slide. Then we went to auntie Debbie's house and played with our cousins. After nap Daddy came home and we went out to mexican dinner.
Mmmm, GWAK-A-MOLE. Hope you had a fun weekend too!

Tommy Adventures