Made of Gray

Traveling w/ Disabilites

Caleigh Meets a Horned Toad

Traveling w/ DisabilitesHolly D GrayComment

Horned toad, horned frog, horny toad... TCU fan? Whatever you call them they are almost gone. Growing up I called them horny toads and our backyard was a little suburban wonderland for the soft bellied friends.

When we were in west Texas searching for bridesmaids and flower girl dresses for uncle Heath's wedding; we ran into this guy.

To be 7 years old and never have seen a horned toad is a crime. I'm told they are going extinct. The Fort Worth Zoo keeps these in an exhibit. I've heard many reasons why their numbers are falling. Urban sprawl, fire ants and lack of red ants which seems to be one of their main food sources. Whatever it may be, it's sad because a horned toad screams childhood fun to me.

My nostalgia kicked in heavily. The last time I remember playing with horny toads was in my backyard a good 20 years ago. There were two adults, a baby and I remember it vividly.

We let Caleigh hang out with the lizard, who really isn't a toad, for quite awhile. We ended up naming him Henry. She was hesitant at first, but started petting him when she realized he was sweet and un-horned. We did a tiny photo shoot and then had a release party by the red ant bed across the street. He scurried off quickly not stopping for a bite.

I'm hoping that we can bring the horny toad back in great numbers to Texas. What a childhood and environmental shame if we can't.


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The Bostonian Summary

Raising the Rare Child, Traveling w/ DisabilitesHolly D Gray2 Comments

We’re home now and overall Caleigh had a good week in Boston. As I wrote on Tuesday, her Monday barium enema was a little rough on her system, but she seems to have recovered from it now. 

On Tuesday we met with Endocrinology about Caleigh’s premature adrenarche and dumping syndrome. They had a lot of suggestions and options related to premature puberty if Caleigh continues to progress in that direction. Interestingly enough the dumping syndrome that comes and goes for Caleigh makes sense for them. 

They told us that there is new research that suggests that your body releases certain hormones that help regulate your insulin levels as food moves through your stomach. Since Caleigh’s pyloric sphincter has shown us that it stays open while food is moving through; her stomach actually dumps her formula straight into her small intestines. So if this research is accurate, her stomach doesn’t have time to produce these insulin helping hormones. 

The endocrinologist wants to admit Caleigh at some point in the future to monitor her blood glucose and hormone levels by IV throughout her feeds for 24 hours. This will tell us what her sugars are doing and might give us some answers. All in all, this is related to her anatomy and not something that is an urgent test. 

The Bostonian Summary via caleighscorner.com

The Bostonian Summary via caleighscorner.com

On Wednesday, we were back in radiology for a upper contrast study with a small bowel follow through. We were there for several hours while they took x-rays and used the fluoroscope to see how things moved through Caleigh’s abdomen. Her motility isn’t what it should be, but we knew that. She is also having some serious reflux while laying down and we knew that as well. The best finding of all is that her intestines, in certain areas, actually look like intestines instead of large barium filled blobs. This is great news. 

On Thursday we went to our CAIR clinic appointment. We saw Caleigh’s nurse practitioner, nutritionist, social worker and GI doctor. Earlier in the week we did lab work and collected urine so that we would have the results ready for this appointment. Everything looked wonderful as the results rolled in. After getting both the upper and lower contrast results the clinic team feels like we should wait and hold off on surgery. Did you read that??? 

We are going to wait and see!

If Caleigh has another bleeding event like she has been having each month so far this year; then we will fly up to do a scope and make a plan from there. It leaves everything up in the air, but at the same time she looks good. She’s gained 3 pounds since May and she’s grown 4cm. She’s tolerating 30 calorie formula like a champ. They have a strict don’t fix it if it isn’t broke policy. Treat the patient not the lab results. Caleigh’s health is looking much better since we saw the team in April. She still has the narrowings and those won’t go away without surgery, but for right now things are working well and she’s growing.  

On our last day we went to Hematology. Since Caleigh is the carrier of two copies of the MTHFR gene her surgeon wanted to make sure she was followed by hematology. Having MTHFR poses a threat with clotting if surgery is on the horizon. After meeting with hematology we have a better grasp on what Caleigh needs. When we get settled in here at home we will go get her homocystine levels checked. If this test comes back high it shows that the MTHFR is blocking an important protein. It’s semi confusing, but if this is the case she will need to take a folate supplement, something that Eric and I are already on. MTHFR is such a new finding, as far as genetics goes, that the research on it is changing daily. 60% of our population is a carrier and I imagine that more and more findings will come out related to it. 

The Bostonian Summary via caleighscorner.com

The Bostonian Summary via caleighscorner.com

In between all the appointments and tests we made it a goal to do something fun everyday. The weather was absolutely perfect starting on Tuesday. We walked and shopped in Coolidge Corner on our first night. We took the train to the Boston Common and Public Gardens. We walked along Commonwealth Avenue. We did a Duck Tour and Caleigh loved it. The idea of a car that is a boat is pretty amazing for a seven year old. Our tour guide was funny and Caleigh loves all things history so she was sold. We ate dinner in Brookline Village one evening. We did take Caleigh to see Inside Out down by Fenway park. She didn’t like the movie and told me that it was boring, but we did it. 

On Friday night we took the train to the Boston Children’s Museum. It’s a beautiful area and the museum is amazing. On Friday nights it’s only a $1 to get in. We showed up an hour early not knowing about the discount. So we walked down by the water, sat on the pier and enjoyed the view until it was time to get in. Caleigh had a lot of fun at the museum (ok, we all did) and I imagine if we’re ever up in the area for awhile we’ll stop in again to play. 

When we left the museum we decided to walk around a bit and ended up in Chinatown for dinner. We got back to the house a little late, but with it being our last night in town we decided it was worth it. 

We are all worn out after the week of appointments and sight seeing. It’s good to be back in our own home and our own beds. Especially without the stress of surgery on the horizon. We have a follow-up at the end of September where we’ll actually see a genetics team. We’ll go to the CAIR clinic and Endocrinology at the same time. Until then we can breathe a little easier and enjoy the rest of our summer hoping that nothing urgent comes up in between. 


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Hello Boston - Hello Again

Raising the Rare Child, Traveling w/ DisabilitesHolly D Gray6 Comments

We made it to a rainy Boston on Sunday morning. Our flight left at 7am and we are lucky that we made it out on time because delays quickly followed throughout the day. Caleigh did great on the plane. She watched Monsters Inc. and Tinkerbell and the Neverbeast to pass the time. 

I had contacted TSA and American Airlines before our flight and they were nothing but accommodating. We had to find a baggage check counter, that had a supervisor, so that we could check Caleigh's 95lb medical supply suitcase for free, but other than that AA was great. TSA was even nicer. I had a specific TSA staff cell phone number that I called when we arrived. He met us and pushed us through the check point with no issues. They claimed that something in Caleigh's medicine bag set off an alert so they had to do a private check on one of us. I opted to be the chosen one. Nothing like a frisk down at 7am to get you going for the day. With Caleigh though, they were wonderful and totally compassionate. 

We explained that 5 hours of flying patience gets us to Boston faster than 3 days of patient driving. Caleigh understood, but still told us that she didn't like to fly. I'm hoping our trip home goes smoothly as well. 

The family housing that we are staying in is $30 a day which is truly a blessing. The house is gorgeous and has 22 family rooms. The hotels here are so expensive especially if there is a game or conference in town. There is a family having to move out this morning, because they have a week until their daughter's surgery. You can't stay in the house unless your have appointments scheduled and they don't. They were calling around to see if they can find a place to stay. The only hotel they found, that wasn't full, was a 2 star for $995 a night. It's just insane. I'm grateful that we were able to get a room for our week here. I'm trying to not think about us being here and figuring this out for over a month when C has her surgery. The added stress of finding a decent, close place to stay can be overwhelming. 

Yesterday we started our Boston journey with a contrast barium enema. Caleigh did great with the actual imaging. She always feels pretty terrible after having it done. It cleans her out and she doesn't seem to keep anything in for very long. 

This time though she wanted to go to the park. She seemed ok as we were leaving the hospital so we jumped on the green line train and went to the Boston Commons and Gardens. It really is a beautiful place. We laid in the grass and rested, ate food from trucks and took it easy all afternoon. 

By the time we got up from our people watching spot, Caleigh wasn't feeling too great. Unfortunately we had a long haul back to the house. Even more so we jumped on the wrong train and had to do some unexpected walking to finish our evening. 

After some serious restroom visits, and finally turning off her feeds to just rest her tummy around 12:30am; we all slept for a good 6 hours. 

This morning we have taken it easy. We're watching High School Musical in the playroom and Eric is cooking lunch. We will be headed to our next appointment with Endocrinology in about an hour or so.

It's supposed to rain heavily this afternoon so I'm hoping we make it back from our walk to the hospital before it starts really coming down. It's already raining lightly. Thank you to everyone for your continued support and prayers. We can definitely feel them making our days easier. 


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Hello Boston

Raising the Rare Child, Traveling w/ DisabilitesHolly D GrayComment

Caleigh's appointment at Boston Children's Hospital was at 12:30 on Thursday. We were told to expect a 4 hour appointment and we got that and then some. Which is a good thing. 

Eric and I have decided to transfer Caleigh's care to Boston. After the third hour with the very organized intestinal care team we knew that this was the place for Caleigh. As much as we connected with the surgeon in Pittsburgh, Boston was the complete package and that made all the difference. 

The traffic that we experienced in Boston was terrible, the weather isn't our cup of tea and the hospital is heavily under construction but we are here for Caleigh's care and that was the most important part of our decision.

Another big factor that we will have to deal with is that our insurance company is willing to pay for travel and lodging for Pittsburgh where they aren't willing to do the same for Boston. It's all about coding and department specifics. Pittsburgh would classify Caleigh's case as a transplant candidate because their transplant and intestinal rehab departments are grouped together and use the same doctors. Boston isn't willing to code her case that way which is probably accurate considering her health right now.  Boston's transplant and CAIR departments are separate. So if we are in Boston for long periods of time we wouldn't have that added monetary support. We will definitely be fine without it, but it would have made the deal sweeter.  I'm glad we aren't talking transplant one hundred percent. 

Boston had already requested Caleigh's medical records including the operative notes from her STEP procedure in 2008. They had called me prior to us coming up and asked a lot of questions. I sent them her formula recipe, medical history timeline and medication/allergy list. They knew so much about Caleigh before we even walked in that it made the appointment really easy. The questions we were asked were basically to fill in the small gaps. The whole five hour appointment we were rarely left in the room alone. There was always someone with us learning more about Caleigh or giving their opinion on how we should proceed. 

They were immediately concerned with Caleigh's weight, growth and overall nutrition. We know she is small and I've noticed it more over the past six months or so that she is skinny. She's been 38 pounds for over a year now, but still growing in height. They are worried about her vitamins, minerals and bone health. 

The surgeon that we met with was extremely knowledgable. He immediately pointed out the surface veins that are all over Caleigh's torso. This could be a sign of an old blood clot. This gets complicated, but it goes back to damage to her liver from her being on TPN for so long. As the doctors in Pittsburgh suggested this could be causing the veins inside her intestines. A portal vein issue. 

Boston doesn't believe that the veins are rupturing causing the bleeding episodes that Caleigh is having. They are guessing that there are a lot of sources. They have recent research that some kids that have had the STEP procedure actually bleed along the staple lines. They think this may be her case as well as ulcers, irritation etc. around the known strictures. 

The "Granulation Tissue" that Caleigh has inside her g-button stoma that is so painful isn't actually that. Granulation tissue is something that happens on the outside of the body that is painful. It's a different kind of tissue that is, we are told, a different kind of pain to painless. In Caleigh's case she actually has a severe irritation of the gastric mucosa, which is the inner lining of the stomach. This makes me cringe because our GI has been cauterizing this off during scopes which must be extremely painful for Caleigh. They are going to give us some tricks for stabilizing the g-button and the option of moving the stoma to a different location if all else fells. Again, this is rare and they really haven't seen it. 

Hello Boston via Caleigh's Corner

Hello Boston via Caleigh's Corner

MTHFR... we recently found out that both Eric and I are carriers of this gene. Caleigh got two strands. In simple terms it means that you may have clotting issues and that you can't break down folic acid in its inactive form. Eric and I both are on methylfolate, which is the broken down version of folic acid, and a B12 supplement. It's made a huge difference in our energy. They want Caleigh on the same. 

I also found out in the last year that I have the auto immune disease Hashimotos. This is basically my body attacking my thyroid. Everyone told me that my symptoms were caused by stress and it took 7 doctors and 4 years to figure this out and that is the short story. Since this is an auto immune disease it means that it is genetic. Somewhere, although I don't know where, the auto immune genes were passed on to me.

All of this to say that Boston is concerned that Caleigh has something metabolic/genetic possibly happening. Mostly because of her ongoing dumping syndrome that raises its hand every now and then. Her blood sugars get into the 300s and within an hour of her feed being done her glucose would drop to the 40s-50s causing Caleigh to feel terrible. Typical dumping syndrome involves stooling out, but Caleigh doesn't budge from her normal twice to three times a day routine. With the MTHFR, premature adrenarche and my auto immune disease they want to investigate her endocrine system to see what is going on.

What was impressive was the fact that they were very aware of MTHFR and how it would affect Caleigh during surgery. I'm pretty sure that was the hook that pulled us in. It's still a fairly new finding and most doctors don't know about it yet so this was wonderful and reassuring to hear from them. 

So the plan... Once we told them that we would like to transfer care to Boston they started processing everything. They ordered blood work for that afternoon and an abdominal ultrasound for the next morning. We will be planning on returning to Boston in the near future for about a week and a half for more tests. This will probably be inpatient so that we can easily add in hepatology (study of the liver, gallbladder, etc.), endocrine and genetics as well as the intestinal tests that she will need. Caleigh may also be put back on TPN at this time to get her body in the best nutritional condition possible before surgery. 

So yes, surgery is in the near future for Caleigh. They want to remove the strictures, lay out her intestines and do an intra operative scope to really see the inside surface of her intestines and proceed from there. It will basically be a very long exploratory surgery. 

They are very confident that Caleigh's food intolerances aren't really intolerances, but more of an anatomy issue. They feel like they can rehab her intestines and there was mention of attempting real food again after things are up and running again. We will have blood work back this coming week and we will have a plan of increasing calories and moving over to continuous feeds for more absorption. 

The ultrasound that they ordered was to see Caleigh's liver, veins and abdominal blood flow as well as veins for future central line access. Caleigh was nervous since she doesn't remember having an ultrasound. At the end I asked her if it was the easiest test ever and she said yes with a smile. I wish all medical tests could be like ultrasounds. We should have these results this week as well. 

Caleigh was in agreement with us about the Boston team and we happily finished off our visit with a trip to the aquarium which she absolutely loved. She shared so many smiles while we were there. As for Eric and I... we aren't on our short gut game like we used to be, but it is coming back fast enough. We're happy with our decision and glad that it was an easy and clear one to make. 


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