Getting more answers...

We have had a record amount of doctor appointments for Annie in the last month, and I want to express my deep appreciation to everyone who has been so helpful in watching Molly and Lexie while I take Annie to all her appointments. I'm also so grateful to everyone for keeping her in your thoughts and prayers and for asking about how she's doing. We feel so loved when people express a genuine concern for her. We have been so blessed to have such wonderful friends who are so generous in helping us during such a busy and stressful time. I have so many dear friends who so willingly (and repeatedly) welcome Molly and Lexie into their homes. We are also so grateful for family that continually ask about her and listen to us endlessly talk about her and her appointments and help us think through all the decisions we have to make. We appreciate our family for being such a wonderful support. Thank you, thank you!

We continue to feel like we're making progress towards Annie's treatments. I took Annie today to see the sports medicine doctor that will be performing her knee surgery. He said she would definitely benefit from surgery to keep her kneecap from dislocating. The surgery will involve two parts: first, he will release the tight tendon on the outside of her knee that has been pulling the kneecap out; second, he will use a donor tissue graft to connect her kneecap to her femur on the inside of her knee to act as a tether to hold on to her kneecap to keep it from sliding out. Typically the tissue used for the graft comes from the patient's hamstring, however, since Annie's hamstrings are so small and atrophied and have unpredictable tone, a donor graft is required.

Fortunately, recovery shouldn't be too bad. Annie will stay in the hospital one night and wear the same type of knee brace after surgery that she is currently wearing. She'll also have a cast on her foot since the orthopedist will be releasing Annie's ankle tendon at the same time. Supposedly she'll be on pain meds for a week, and have her ankle cast for 6 weeks, then a brand new pair of AFOs. Unfortunately, the ENT suggests Annie have a full 6 weeks of recovery from her tonsilloadenoidectomy before her throat will be healed well enough to have her intubated again for her knee and ankle surgery. So she'll need to endure her dislocating knee longer than we expected, but at least this way we'll know that Annie will be at her healthiest and strongest going into her second surgery. (The tonsilloadenoidectomy must be performed before her knee and ankle surgery due to the risk of operating on her with an obstructed airway.)

The tonsilloadenoidectomy will be the more difficult surgery for Annie and we appreciate your prayers for her as she goes into this procedure. The outcome is unpredictable due to Annie's irregular muscle tone. The ENT said in some rare cases in children with low tone like Annie, the tonsils actually act as a stent to hold open the airway and removing the tonsils in those cases has actually caused the airway to collapse even more. If Annie's airway after surgery continues to be obstructed, they will intubate her. If she fails continual extubations they will start pushing us to do a trach.

The other risk is that if an emergency situation arises in surgery, standard procedure is to do a trach. We realize that trachs are reversible, but we acknowledge that in a child like Annie, once given a trach, she will probably never come off of it. A trach has always been something that we've said we would not put Annie through, and although we try to just take each situation as they come, we feel that a trach for Annie would be a major change to her quality of life (hers and ours). It would put her at a whole new level of daily care needs and would limit certain activities that she could participate in. It would also require even more medical equipment to have with Annie at all times, and require more trained supervision of her at all times.

So even though the doctor anticipates no need for a trach, we are still somewhat nervous because Annie's tone is so unpredictable. So please keep Annie in your prayers and pray that she's able to have a smooth surgery and respond well to the procedure. She is now scheduled for her tonsilloadenoidectomy (and a mole removal) on October 16th. Her knee and ankle surgery is not scheduled yet, but will most likely be the first week of December.