These past few weeks have been a whirlwind. Here’s a rather lengthy update for everyone.
Julia’s second part of her surgery went well too (sorry for the delay). The Doctor was able to tighten the left corner of her mouth and minimize the sensitive skin that was on her nose.
We ended up staying in the hospital until Saturday (so two days). The first night was in the surgical ICU. Poor Julia only wanted to be held, so that’s exactly what I did. Our evening nurse hunted down a reclining chair for me and that is where we slept.
Friday afternoon Julia was moved to a regular room. The focus was to get her to eat (drink from a bottle). This was difficult as they wanted her to start on juice, which she’s not a fan of. We eventually got the OK to give her formula, and Saturday afternoon hit the required number of ounces to be discharged. Yay!
We spent the next week taking it easy. Julia adjusted rather quickly to having two casts. She has figured out how to crawl, and pull to a stand and cruise along furniture. Every now and then she will look at her left hand, pull at the cast, and say off. We have been counting down the days to when she is free again, and when she doesn’t have weapons attached to her. We have all gotten hit by her casts, and boy do they hurt!
Julia has had a few other appointments during our stay here. She had an orthopedic appointment before surgery. At her one year check up her pediatrician mentioned that her left leg was shorter than her right. We had an orthopedic appointment set already, but it was to follow up with her spine. We ended up seeing a new doctor because I wanted Julia to be seen prior to surgery since her left leg would be in a cast. She had an x-ray done, and we learned that it’s not that her left leg is shorter, her left pelvic bone developed slightly turned outward causing her leg to be pulled up. There is nothing to worry about at the moment, and there may never be. As the orthopedic said, this may be Julia’s “normal.” He also told us that Julia’s spine looks good and she does not have scoliosis. So good news!
We also had a follow up with our favorite, Dr. Borer. He actually did his exam during Julia’s surgery (well before everything really started) so that it would be easier on both of them. He was pleased with how well everything is healing and working. A couple of weeks later Julia had an ultrasound and X-Ray done and we saw him again for an official office visit. Again, everything looks great. We received the all clear for another six months.
A new department we saw this time was the dental clinic. While it is normal to see a dentist this young, especially when you already have 3 teeth and two more coming in, we wanted some more information. One of the unknowns with Goltz Syndrome are teeth. We do not know if Julia will have teeth on the left side of her mouth, if she does will they be normal or shaped differently. The dentist examined Julia’s mouth (which she hated) and let us know that there is a strong possibility of teeth coming in on the left. We don’t know how many, and again what they will look like, but she may have some. The dentist explained things that could be done if necessary down the road, but to just wait and see for now.
Check back later this week for a final update from our Boston stay. xoxo, Tori
PS: If you have Instagram follow me (torisc). I love taking pictures & share more frequently there.