Tuesday, May 17, 2011

Two Steps Forward, One Step Back

As I reported last week we finally started seeing Delaney gain weight, and made some interesting behavioral improvements. Both we found to be encouraging. Like with any good news you begin to expect more of the same each day. It's unfortunately not so easy to just expect steady gains every day. Some things we just have to be patient with, easier said than done perhaps.

I got some things mixed up in the calendar and mistakenly said that we were supposed to see our Pulmonary specialist Dr. Doshi yesterday. Well, that's not in the calendar until next Monday. So Yesterday I decided to make use of my time and head over to Children's Hospital to pick up Delaney's records, including her MRI and EEG results so we can have something to compare our new results for when we meet with U of M Neurology. I have to say that I did pretty well with time, I was actually able to get out of there within two hours, must be some sort of record. Since I was there anyway, I checked in with our Cardiologist Dr. Sommerfield (I had been misspelling her name up to this point.). I had hoped to be able to get in to see her this week, which would be the two weeks that she had asked for. Accommodating as ever she was able to pencil us in for this Friday at 9:00am. She's such a good person, not only for working with us but she also takes the time to ask how we are doing and really genuinely cares. We feel very fortunate to have her. So one mental note that I will throw out there, is that she would like to see Delaney's x-rays from our most recent trip to Beaumont. I will get on the phone and order those up today.

One setback today which was upsetting is that we can't move forward with the Hyperbaric Oxygen Therapy until her heart surgery has been completed. They are concerned that she would be at an increased risk for an embolism. So we really need the defects in her heart to be fully repaired before we enter in to this kind of therapy. I just hate waiting on that, because I feel that every day is critical. Certainly, we are not remaining stagnant we have many other avenues we are pursuing, it's just that we are most excited about this therapy with everything we have seen and read. In the meantime we will keep the PT/OT working and we even added one more feature to that today.

We were visited by Lisa, our Feldenkrais practitioner. I wasn't able to be here for the full session, since I was at a doctor's appointment of my own. However what I did see was very interesting. My gut tells me that it's better than traditional PT. She is truly looking at how the Brain links behavior and movement of limbs to the entire body. She uses these subtle movements to trigger learning in the brain. She will be looking at fine and gross motor development. She saw some encouraging signs, many that we have been seeing which is validating. She was able to get Delaney to "push off" with her feet, gently but it was definitely there. She also noticed that she was spending more time with her head turned to her left than she had when she first started. Something that we have been dealing with since being home is that Delaney has a tendency to turn her head to the right. We are really hoping for much more balance. This therapy as I have shared before has had great success with children. I will never forget the video of a young college girl who as a child was given a very grim prognosis. We don't know if Delaney will be graced with as much benefit, but I am so hopeful.

This is turning out to be a very difficult week for our family. Lindsay and I are extremely tired, and we really need some breaks. We love our house but we need to get out more. This horrible weather isn't helping. So we will be acting on that to get out of the house for a few hours. Maybe with a little help from our friends we can make that a bit easier.

Prayers for rest, patience, hope, healing, and inspiration would be greatly appreciated!

B & L & d

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