WOW! I was logging on here to type some new developments in Olivia's care, and realized that I totally left you hanging last year! Would someone please keep "encouraging" me to write on this thing?
So to fill you in, Olivia had the surgery to remove her hardware from the big surgery (April 2009) last August. I don't remember the dates exactly, but it was a breeze relative to the surgery to put it in. Olivia did really well recovering, all except she never did quite gain all of her strength back, or the weight she lost, for that matter.
Not long after that surgery we found that Olivia had a small fracture in her left thigh bone (fibula?). She had a long splint on for about 8 weeks and again did not regain all of her strength. Wearing the splint really took its toll on her leg.
In February I took her to DC to a seating clinic to talk about a new wheelchair. They saw the one she was in and definitely agreed that she had outgrown it, and it was beginning to do more harm than good.
She was evaluated on February 26th to get the new chair. John (from the Rehab company) took her measurements, listened to my concerns, explained some good options and wrote up the order for her new chair. Several weeks later I called to check on the status of the order, and I was told that John had been in an accident and all of the files that he was working on were reassigned to another person since he would be out of work for several months to recover.
On April 18, the day before Avery was due {Avery is our newest daughter, born April 21} Mark (John's co-worker) came to do a few more measurements and to finalize the order. The chair was ordered the week after Avery was born (if I remember correctly).
This past Monday we received the new "glow-in-the- dark" chair. It looks so much better for her. It has a tray and lumbar support which will improve her position. The chair also tilts to a reclining position which will allow gravity to help improve her position.
Oh, last Thursday night I was sitting down to feed Olivia with her on my lap. As I sat down her legs hit the couch cushion next to me, and somehow (her legs must've been crossed) I injured her left leg. I honestly thought it was her right leg because her right foot was turned in, but I now think that she was doing that as a guarding reflex to block the pain or something. I didn't know that it was her left leg until the Triage nurse was looking for a room to put her in when I took her to the ER the next day. After she left the room I tried to see if I could find the source of the pain by gently pressing on her right foot and ankle. I found no sign that anything was wrong, but then I noticed that her left leg was swollen just above the ankle. They took several x-rays of her foot and lower leg, and determined that she has a buckle fracture. The PA at the ER put a splint on to stabilize it until we went to the Orthopedic doctor on Tuesday.
So then forward again to Tuesday, July 12, 2011. The whole reason this appointment was scheduled was because Olivia's posture has been worsening. Like I said earlier the old chair was doing more harm than good. I have been trying to get Liv in to see Dr. Todd, but he's been deployed since late November or December. I had to take what I could get, which I'm thankful was not a referral out to DC Children's, but rather an appointment with a reservist Dr. who was stationed at Walter Reed before Dr. Todd. Dr. Tis was a very intelligent doctor, who did very well to explain all of the results of Liv's latest foot/ankle/leg x-rays as well as her spine x-rays. He did not feel that a cast was necessary for the break. He actually said that a buckle fracture pretty much will heal on its own as long as a person is not bearing weight on it. He said to put no more than a sock and/or a sandal on her left leg. Anything more may cause her pain, and it would not be helpful. She is not to put weight on her leg for 4 weeks.
As for her spine x-ray, Dr. Tis told us exactly what we were expecting to hear. Olivia's scoliosis has progressed significantly. Her curvature is now 67%, which is 17% beyond what Dr. Todd told us was "when we'd do surgery".
There are a lot of things that need to happen between now and that surgery though, but he wants to move quickly. He ordered bloodwork to determine if her nutrition is good. We will get those results in the morning. If the results are good then we'll go August 2 for a surgical consult. He will try to work her into his August schedule. If they are not good, we will need a consult with a Pediatric Gastroenterologist to discuss a feeding tube being placed to "fatten her up". She needs to have as many extra calories as she can before the surgery to promote healing.
After that surgery would be several weeks to a few months with the beefing up, and then a surgical consult for the scoliosis surgery. He definitely wants to do the surgery sometime in 2011. The scoliosis surgery will include placing a rod and screws to prevent the curvature from getting worse. I am not sure how much improvement there will be at this point. I only have a very limited understanding of what the surgery will entail, let alone the outcome.
I do know that it's about a week in the hospital for recovery, and she will not need a cast after surgery. Beyond that, there is still much to learn. If you have any questions that you can think for me to ask (I would love to have help brainstorming) I will try to get an answer for you.
That pretty much brings you up to speed with where we are for Liv's care. God is still in control, and we are still trusting Him throughout this whole thing. I will write more after we get the results of the bloodwork tomorrow. We are all so sorry that Olivia has to go through this, but we appreciate knowing that we're not alone. There are many people who pray for Olivia everyday, not knowing what she is going through. We are very grateful.
Until next time...
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