Dear friends and family, try

We just wanted to thank you all again for your wonderful donations and also give you an update on Neylan.

On Tuesday night we drove down to my parents’ house so that we could catch the Amtrak down from Providence to Penn Station in Baltimore, MD.

Our little family got sick with a bad stomach bug about a week and a half or before the trip. One of the 2 places that we could stay for a small fee ($15-$20 at The Johns Hopkins Children’s House and The Baltimore, MD Ronald McDonald House) has a policy stating that if we are contagious within the 3 weeks before our stay that we need to make other arrangements through them to stay in a hotel.  It was such a blessing to have some extra to the side to pay for a hotel. I called the RMH and made reservations for the Tremont Plaza Hotel, which we got for $50 a night plus taxes by going through the RMH which had our recommendation from Bettye at Dr. Gearhart’s office.

We got on the train at about Noon on Weds. and got to Baltimore Penn. Station at 6 something. Neylan had his first ride in a taxi to the hotel. It was beautiful and we took the rest of the night to relax before his appointment on Thursday.

His appointment was at 11:30 in Dr. Gearhart’s office. Dr. G is very nice and we were extremely thankful for him seeing us in his office as there would have been a charge if we’d gone to an exam room in Hopkins.

There are 2 very important parts to a successful bladder neck repair. The first part is a good initial repair. The second piece of the puzzle is bladder capacity.
When Dr. Gearhart took a look at Neylan he said that his repair was very well done by Dr. Merguerian. He noted that he DID NOT have an osteotomy of his hips at his initial closure, but that’s OK, and that his hips look REALLY GOOD with only a 1 cm gap in the pubic symphysis. He said that this is wonderful news as Neylan is halfway to a successful bladder neck repair when he is ready. The other important piece in this puzzle is bladder capacity. He said that when Neylan’s bladder was initially put back into his body, that Dr. Merguerian noted that it was a bit on the small side, but that it should grow over time. He then asked us if we knew what Neylan’s bladder capacity is, which we do not and will be heading back down to Hopkins to see Dr. G for a cystoscopy. Bladder capacity is important to the success of bladder neck reconstruction because bladder is used to correct it. Also, children with bladder exstrophy do not have bladders that tend to grow well. It is very important that their bladders are allowed time to grow because forcing their bladders to grow doesn’t work like it does for normal bladders.

Dr. G put it this way: They have taken a look at bladder cells under the microscope and have noticed that normal bladders seem to “talk to each other” as they grow, which makes them grow. Bladders with bladder exstrophy do not communicate like that and tend to stay on the smaller side. After we asked him about the surgery that Neylan’s Dr. in Lebanon wanted to do at 2 1/2 Dr. G said that it would not be a good idea for him for 2 reason’s. 1) We don’t know his bladder capacity, and 2.) forcing their bladders to grow does not work like it’s been shown to work with children with spina bifida. After hearing that much of the information we decided that we are NOT going to have that surgery when Neylan is 2 1/2 and will be doing everything in our power to get him what is needed so that he can go see Dr. Gearhart for any future surgeries.

He also asked if Neylan was on a bowel voiding regimen, which is very important. I can’t remember exactly how he worded it… but in essence he was asking if Neylan was on a laxative regimen, which he wasn’t but we knew we needed to get him on. If Neylan is even slightly constipated it could inhibit bladder growth. We have since gotten him on 2 teaspoons of Miralax mixed with 4 oz. of fluid. and we were told to cut back to 1 tsp. with 2 oz. of fluid if it’s too much.

It was an absolute blessing to be able to bring him down. We thank you all so much! Thank you for allowing my son to see this great doctor and we hope that from here on out he’ll be the one to do Neylan’s major BE surgeries.

THANK YOU AND LOVE,

Megan, Abelardo, and little Neylan Gonzalez