Gavin's First "Play Day"

It's now been a week since we arrived at PCMC. We have been through numerous tests and we have gone through many ups and downs. We have found out a bit more about Gavin . . . we know now that he has a small pituitary gland which may be a problem in the future with growing. Jason and I have decided that it is really okay because we aren't tall people! :) (I know that sounds kinda bad, but if we don't laugh, we cry.) We also know that the cochleas in Gavin's ears didn't not develop completely and that he may also have underdeveloped optical nerves. This means that his hearing and sight may be diminished, or not there at all. Maybe it is me trying to be an optimistic mother, but I think he can see and hear just a bit. We talked with the ENTs and they will start Gavin on hearing aids in the next month or so if he is still here. We are still waiting for a consult with the opthamologist. some of his eye tests look okay, some don't. . . some say both eyes are bad. . . some say his right eye is okay, but his left is bad. There is just too much up in the air to even know what to worry about. We also found out yesterday during a bronchoscopy that Gavin's airways are not floppy anymore, but the amount of secretions and his inability to control them (swallow, cough and clear his throat) may be a significant factor in his breathing "episodes." We have watched him start to cough a little and it's good to see that his respiratory muscles are improving. We just need him to swallow so his secretions won't pool and thicken in his mouth and throat. Who knew swallowing would be such a big deal?!?!?! We also found out yesterday that he has a respiratory infection . . . so now we are back tracking with the secretion issue again. Today we are supposed to have a nerve/muscle test and we are starting with speech therapy to help him suck and swallow. We hope this will help him.

The best part of the day today was that we got to start physical therapy! This is to help him improve his muscle tone. We learned how to give baby massages so he can learn to recognize the different parts of his body. Then, we got to get down on a floor mat with him and work on muscle movement and strength in his neck. They are thinking this will help him gain more strength to learn to swallow. It was very fun to play with him on the floor like a "normal" mom! This will be a long journey, but he is definitely worth it. I just love this little guy so much.



My aunt Laurie went to a Stake Conference a few weeks ago where Brother Holland spoke. He spoke about trials and how to endure them. So many times along the way I have felt like we have been forgotten . . . that is just my lack of faith. One thing that Brother Holland talked about was how the Lord loves broken things - and the we shouldn't be angry if he breaks our hearts. That is how I feel. I feel like I have a broken heart in many ways. My heart aches and breaks for my little Gavin, but I also feel like I have learned how to have a broken heart and a contrite spirit. I have learned that it's okay to be broken. It's okay for Gavin to be this way. . . he is here to teach us how to return to our Heavenly Father. He has already taught me more than I could ever teach him.




PS - Don't you love his hair!?! Look how long it is!