The Month of August

Where do I even begin? I've left this blog quiet almost the entire month of August. Lately, we have been living life instead of documenting it, and really enjoying the outcome.

I'll start where I left off, the scope. Caleigh is feeling so much better since the removal of the ulcer on the inside of her g-button stoma. The ulcer biopsy came back normal, which was expected. After about three weeks, we got the disaccharides enzyme results. All of Caleigh's digestive enzymes came back at normal levels except Amylase. Amylase is the enzyme that breaks down carbs. Which just happen to be in almost everything. Right now though we are holding out on changing anything. Caleigh will continue her rare tastes of food when she asks for it, and we will continue her Elecare formula. In our minds, we are wanting to get her down to three "meals" a day and no night feeds. Freedom from the tube is important to our family.

The month of August also brought Caleigh's 5th birthday. This year's birthday was again, lived, and not so much documented. We took Caleigh to the zoo on her actual birthday. We gave her a ukulele, which she is awesome at playing. It's just the right size, and she asks to play it almost daily.

Caleigh is so completely aware at 5 years old. For weeks before her birthday we counted down to the day. Caleigh frequently told strangers how many days it was until her birthday. She was so incredibly excited about her big day.

We woke her up that morning with balloons covering her bedroom floor. We bounced them around, played in bed and then opened presents. It was a good day. Caleigh's birthday party ended up being a rainy pool party. Caleigh's friends were able to swim a little bit before the rain hit. Our birthday girl wasn't excited about the rain at all. Overall though, she really had a good birthday party.

Caleigh's new AFOs aren't working out so well. The more they get adjusted the worse they fit. In the first 15 minutes of our car ride home from getting them adjusted again; Caleigh ended up with a bruise on the ball of her foot. She wasn't even bearing weight. Right now we are using her old boots while we work on the new ones. I'm not thrilled about the bruise.

Caleigh had an appointment with her orthopedic doctor this month as well. Caleigh's hips, neck and ankles are all doing well. We will go back in six months to check on things again. Right now we are looking forward to the next Botox appointment in October because it really did make a big difference with Caleigh's ankles.

Right now Caleigh is loving Strawberry Shortcake, My Little Pony, Phineas and Ferb, baby dolls, reading and watching the Olympics. The Olympic games quickly took over our house this month. Caleigh was mesmerized by the games. Specifically anything to do with water. Swimming was her favorite and we spent hours watching the athletes splash in the water. Caleigh would literally yell, cheer and gasp with the games. She loves it. The Paraolympics started yesterday and we have been watching the live stream online some today. I'm pretty sure that the paraolympians are the true athletes here; it's just amazing to watch. I would love to take Caleigh to the paraolympics in four years. It would be a wonderful experience for her. Guess I should start teaching us Portuguese in the mean time....

Last night we took Caleigh to our local college to watch their wheelchair basketball team. This was Caleigh's first time and she loved it. It was a little rough for me to watch. I'm so cautious with Caleigh's wheelchair. They ram into each other, tip their chairs over, and generally knock each other around. I wanted to help them off the floor every time they fell over. Caleigh quickly made a friend who promised to play basketball with her after the game. Unfortunately, Caleigh couldn't make it to the end of the game because she was so tired. We plan on going to the next game and getting there a little early so that she can play. Within a few minutes of watching she told us "I want to play." She also wanted her chest harness off and feet unstrapped. She did a good job of sitting up without them. Little miss independent herself.

Since Caleigh's schooling is year round and flexible, we are still enjoying summer while we have it. We generally do school in the morning, go to any appointments we might have and then play, swim and enjoy the afternoons. Caleigh still requests her weekly library visits and reading is a big part of our day. Art class will be starting up again in a few weeks as well. Public school starting up hasn't changed our routine at all. It was relaxing not having to do the typical things involved with the start of a new year. I think we've found a good groove this year. September will be typically busy. I'm hoping to keep up around here a little more often.

The Scope

We left our house at 9am and got home around 3pm yesterday. Being there felt like riding a bike.....a bike that we never wanted to get on. Nonetheless we were back to what we are good at; managing Caleigh's care in a room full of strangers who make assumptions about her immediately. 

We had to wait around for quite awhile. Caleigh totally rocked her iPad and by the time we left everyone was talking about how smart, bossy and persistent she is. That makes my heart happy. 

We talked to the anesthesiologist about the length of time it took Caleigh to wake up last time she was under. She decided to cut back a bit on the silly juice dose and manage the anesthesia part minimally. 

 

When Caleigh finally went back she was relaxed, but still aware. She requested "cherry coke" as her face mask scent. I'm assuming she chose coke because she just read a school book about "Pop." I had to explain that there are many ways to say pop, soda pop and coke. Here in North Texas most of us call it coke even if it isn't a Coke. This must have stuck with her because she has never even seen a cherry coke around our house. I asked her later if she like the smell and she said "no."

We were told that the total time would be about 30 minutes. It ended up taking well over an hour. When we went in to talk to the GI he explained that Caleigh's g-button stem was too short. It was causing erosion on the bottom side of the stoma. So basically it looked like granulation tissue on the inside. I'll save you the scope pictures this time. He said that it oozed and seeped when touched, so he took several biopsies. He seemed a little concerned, but mostly thought the ulcerated area was from her button. She wasn't even joking when she repeatedly told us "my button hurts" "my tummy hurts."

He decided to cauterize the area, so there was quite a bit of bleeding during the procedure. After he finished that area he went down a little further into the small intestine. At that point there was a problem with anesthesia having the breathing tube to far in. It was essentially only inflating one lung. Eric and I are not happy about this part. Rookie mistake really, especially with all the monitors she was hooked up to. So our GI quickly grabbed some biopsies and got out without looking to much further.

We do have images of her fundoplication. This was done along with her g-button surgery when she was six months old to prevent Caleigh's excessive green bile vomit from being aspirated. It is now non-existent. It looks like a loose piece of skin rather than a tightly woven piece. This is encouraging with all the swimming face dipping, cup drinking, and even everyday secretions that happen. This means that Caleigh's swallowing is working well.

Caleigh woke up easily from the procedure and we were called back quickly when she did. She has a new g-button, a non-balloon version of her old one. The hospital didn't have her size with a longer stem in stock. We will have a balloon version at our house in the right size in case this new button mysteriously jumps out, although these are harder to remove. This was actually the very first type of button Caleigh ever had.

It appears that they only had to stick her twice to get an IV; which is great for Caleigh. She was bit by two mosquitoes while in the hospital. In true Caleigh form she is huge and swollen in those areas. She has also developed a crazy skin rash in the exact shape of each monitor lead, tape placement and a bizarre gigantic rectangle on her back. I'm not even sure what that was used for. These are all perfect in shape which means the adhesive used for whatever is the problem.

Caleigh still says "I feel hurt" when we ask her. I imagine it will take awhile to heal from the cauterizing and biopsies. She slept well last night except for the half a dozen times I shook her to make sure she was still breathing. Yes, I still do that.

Biopsy results should be in sometime early next week. The enzymes tend to come back randomly so I'm not sure when those will come back. They also did regular labs while she was under and those came back great.

Thank you to everyone for your well wishes, thoughts and prayers. They are all very much appreciated from our family.

Scope Tomorrow

For about 12 days Caleigh has been complaining about her button and tummy hurting. We've added a daily probiotic and another ulcer medication with no results during that time. Her button looks good. I could tell that we weren't dealing with the dreaded bacterial overgrowth so my only thoughts were leaning towards colitis ulcers. Caleigh's stool has been great lately. She stools on the potty now and I can only remember one night time accident in her diaper in the recent past. She ranges from 0-3 times a day and it is usually well formed. Our big challenge with potty training is of the urine form, but we will get there.

Anywho, we had an appointment with Caleigh's GI today. He loves how she looks. Her weight, her belly, her button....everything. He was gushing over how great she is doing.

Let me back up... before her appointment I asked Caleigh if there was anything that she wanted to ask her doctor. She said "yes" and then spelled out the sentence "Can I eat food." 

Awesome. 

She wants to eat food. Who would have ever thought our kid who could care less about dietary pleasure would want to eat again. Clearly she doesn't remember the pain it caused her, but this is an opportunity for a new start food wise.

So at the appointment I told him what Caleigh asked, and he was all for it. The issue is mostly what to feed her. We took home a can of Neocate Nutra. It's like infant cereal, but amino acid based just like her Elecare formula. I was also told by the dietician that green beans are one of the lowest foods on the glycemic index. There isn't a book out there for this. It's a starting point. 

Tomorrow Caleigh will go in for an EGD scope. This scope can hopefully tell us what enzymes Caleigh is lacking. These enzymes help break down foods. We know that she has trouble with sugars of most kinds except dextrose. Maybe this will tell us more. Since Caleigh's tummy seems to be rid of bacterial overgrowth right now; we may be able to get an accurate reading of enzymes this time around. Last fall the biopsies were inconclusive due to bacteria.

So here we are, not wanting to rock the boat, but wanting to find out more. Prayers for new answers and a smooth procedure tomorrow are greatly appreciated.