Made of Gray

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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