Philly Update

As I write this I am sitting in the hall of our hotel as Morgan and David are finally resting. It has been a very long and exhausting trip so far. On Monday we went for our first visit to the Shriner's hospital. On this day they did a lot of x-rays to check out Morgan's spine, hips, and knees. She has developed kyphosis of the spine and now is at a 70% bend. Kyphosis is different than scoliosis, it means that she has a curved back, like a hunch back, rather than the s curve of scoliosis. This is something we have known about and tried to address through bracing without good results. The doctor's will plan to follow this and may try bracing her again in the future, for now our focus is the knees. The hips are still in place from surgery and are looking good. The right has a slightly better placement than the left, but there is no need for concern. They are going to continue to monitor how Morgan's hip sockets are forming and around 4 or5 years old will decide if further surgery is necessary. They had nothing but compliments to say about her feet and how good they were looking which was great news. As far as the knee goes they decided to go ahead and cast both knees to try to increase the range of motion on both. As of Monday they were able to get PROM (passive range of motion) to 65 degrees on the Right and 40 on the left. The were able to cast her at about that range. The first day of casts went alright, Morgan stirred a bit in her sleep, but we would reposition her and she would fall back to sleep. Tuesday and Wednesday night was a whole other story. For the past 48 hours she has been miserable. She cries whenever we move her, screams at night for hours on end, has been having leg spasms, and can't sleep. In all I think we have had about 4 good hours of sleep. This morning we decided we could not take it any longer and brought her back to the hospital to have them check her. They pulled off the casts and said everything looks great, in fact she is showing good signs of improvement. They said the screaming and pain is probably just from being stretched and the leg spasms. They gave her some vallium (spelling???) to help with the spasms and recasted her. She is now finally resting peacefully.

The good news is this: After one pair of casting (only 3 days) she gained almost 10 degrees in both knees. Her new casts are now stretched even further. We will go back on Monday for a third pair. On Monday they are also planning on casting her for knee braces. The plan as of today is to continue to cast her a few more times and then go to bracing. The braces will have hinges on them so the ROM can be increased periodically. Initially she will wear the braces 24 hours a day, then she will go down to just at night. We were very excited to hear about the bracing as this is something we have wanted from the get go but the folks in Tucson have always said it would be so hard to make them for someone so small. In the meantime by not bracing her at night we lost a lot of ROM that was gained from the 15 pairs of serial casts she went through at birth. Anyway, Dr. Van Bosse sounded optimistic after today that if she continues to progress as well as she has over the past 3 days that Morgan could avoid surgery.

We will keep you all updated on what happens after Monday.