The Bostonian Summary

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

The Bostonian Summary via

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

The Bostonian Summary via

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. 

Hello Boston - Hello Again

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. 

Plans for Boston

We've had so much going on lately it's been hard to catch up here. Plans for us going back up to Boston Children's Hospital have been in the works for almost a month now. Our tickets are bought, and our housing and appointments are scheduled out.

We will be in Boston from June 21st through June 27th.  We fly in this Sunday. Caleigh has a contrast enema that Monday, Endocrinology on Tuesday, Upper GI with a small bowel follow through on Wednesday, CAIR (Center for Advanced Intestinal Rehab) clinic on Thursday and Hematology on Friday. We fly home on Saturday. It should be an interesting trip with much to learn. We still do not have a surgery date, but should have a better idea after this coming week. 

Plans for Boston via

This past weekend we took a tiny road trip to west Texas to help Caleigh's future aunt pick out her wedding dress. Caleigh will be a flower girl for the first time this coming November. She is beyond thrilled. 

Plans for Boston via

While we were out there, Caleigh was able to experience a horned toad for the very first time. I was able to play with these guys all the time when I was little, but they quickly disappeared almost on the brink of extinction. They are apparently making a comeback out west. I'm not going to lie here, I was so excited to see this little guy. We gave him some love, named him Henry and then set him free. 

Plans for Boston via Horned Frog
Plans for Boston via Horned Frog

Caleigh has been loosing teeth left and right. She's up to 6 visits from the tooth fairy so far. Most of these teeth have been pulled by Eric while swimming in the pool. It's a weird place to pull a tooth, but it works! 

Since we've returned from our Northeast trip, we've slowly been going up on her calorie intake. This week we are up to 30cal. Just to put this in perspective, we have increased the amount of Elecare cans we use by 25 each month. As a result Caleigh has gained 2 pounds, but seems to be more uncomfortable with her feeds. We've slowed down her rate and she now gets fed the majority of the night as well. Continuous feeds are better than IV nutrition any day. 

Plans for Boston via 

My plan is to update as frequently as I can while we are up in Boston. I have some good ideas for fun things to do, as well as some advice from seasoned parents that are steering us in the right direction. 

We would love your prayers and positive vibes for smooth travel and limited discomfort for Caleigh during all of her tests. I have a feeling we will need to get used to going back and forth this year. 

Breaking the Streak -- A Night in the ER

This past week took us down an old road. It took us to back to the emergency room, a large abdomen, blood in the stool and the realization that making even the tiniest of change to Caleigh's regimen would land us in a place we didn't want to be. 

Last Thursday we picked up and started an increased dose of compounded sulfazalazine medication that Caleigh takes for ulcers. Boston needed to increase the dose for her weight and they wanted to give it to her in liquid form which she would absorb better. We went back and forth with our pharmacist about what the compounded solution couldn't have in it. It was clean of things that Caleigh hasn't tolerated in the past. So we started it. 

One day later, May 8th, Caleigh wasn't feeling great. She had a small amount of bright red blood in her stool and her tummy was getting bigger. We had labs and a urine sample to complete that afternoon anyways, but I called Boston to tell them what was going on. We decided to stop the compound and go back to our regular dose and powder form. They also wanted Caleigh to be seen by a doctor just in case. No one in our GI office would call Boston back and our Pediatrician, who has been great with the transition, said she would see us. Looking at the time though, 4pm on a Friday, she decided to send us to the ER where we could get all the testing done in one place. 

So we went to the ER. We broke our streak. Caleigh hasn't been in the ER, much less the hospital since February 2010. It was a long break and after being in there for a ridiculous six and a half hours we remembered why we avoid it at all costs. Going to the ER was silly really, but I understand that Boston doesn't know Caleigh and they can't take any chances being so far away from us. It took three sticks for an IV just in case she needed fluids, which she didn't. X-rays were fine and so was blood work and urine. We got home around 11pm that night. 

The next morning Caleigh was really sick. Not tummy sick, but definitely head cold, flu-like virus... not feeling good. She slept upright next to me in the recliner most of the day. We slowed down her feeds, rested a lot and dumped tons of saline in her nose to keep things loose. Thank goodness our girl blows her nose like a champ. 

By Sunday she was much better and the one time blood in the stool didn't continue since we stopped the newer version med. It was all just a coincidence of events which is usually Caleigh's style anyways. She gave Eric the bug by Tuesday, I got a few days of nausea and exhaustion and we all continued to generally feel terrible most of the week. 

Boston has decided not to make any other changes other than increasing calories before we head back up to see them. They (and us) don't want to be sitting in the ER and back tracking until we see them again. We're not rocking that boat.