Wednesday, December 31, 2008


Shira Update

Well we have been back from the hospital since the 24th of December. When Shira was sick she was on bipap for about 17 days straight which means she became dependent or biapap dependent. Bipap is bi level positive airway pressure and is the type of respirator she uses. This type of ventilation is considered non invasive vs. tracheostomy which is considered invasive because it takes a surgical procedure to introduce the system to the body. Anyways, we left the hospital while Shira still had a little adolectasis in her left lung but she was well enough at that point to be managed at home. Because we have a battery back up system and true sign wave inverter we were able to transport Shira back home while on her respirator. We took an ambulance from the hospital because it is so much easier to load her onto a gurney with all of her equipment, slide her into the ambulance and have the extra 2 sets of hands to bring her into the house. Once home the recovery really started. It was so great to get out of the toxic hospital air and lighting. Our first days at home were spent getting Shira slowly off of bipap and getting her food back up to speed. Shira is fed through a tube in her stomach and has been fed this way since 6 mos. Of age. Shira is now on her regular feeding schedule and volume as well as spending about 6 hours a day off of bipap. Yesterday was our first walk in 22 days which is way too long to be indoors although I remember being inside for more than 3 mos. At a time when Shira was first diagnosed. Shira is a little weaker than before going into the hospital but it is my hope that she will gain back her strength. We have been spending our days playing, learning, Shira is a real sponge. You don’t notice what she knows or doesn’t knows because expressing herself takes a lot of effort but then you ask her a question out of the blue and she gives you the answer or sings something on her own. She knows so much and can almost read. If you just sound out a word she’ll tell you all the letters. Shira loves to finger paint and do all sorts of art work. I am going to build a new repair shop in my basement for repairing musical instruments and making adaptable devices for Shira so that she can do more. We are looking forward to getting back on track with learning how to drive Shira’s power chair. Oh I forgot to mention that Help Fill A Dream approved us to build an accessible playground in our back yard with a special swing for Shira so she can play with Sam and other kids. We are really looking forward to some better weather so that can happen. Also, ChaiLifeline is sending Maxine and Sammy to Disney World in Florida in January on their way to visit Bubbe Ruth in Hollywood Florida. Maxine has a cousin with a little girl slightly older than Sammy that lives near Disney Land so they will get a chance to visit with them. Shira and I are going to start to run again and we’ll see how it goes. I have some foot problems these days due to many years of sports and I’m about 30 lbs over weight so hopefully some weight loss will take care of the foot problems. Shira and I want to try and run at least the half marathon next October again and beat our time of 2:22 but we will train for a full marathon in the hopes of doing that as a fundraiser. I have to thank everyone again for the love and support so many of you gave us while in the hospital. These life and death situations with our kids are gut wrenching and take an enormous amount of energy and concentration to get through. The love, prayers and contact make it a lot more easy to make it through the critical moments. Maxine, Sammy, Shira and I wish all of you a Happy, Healthy, Successful 2009!!!!!!

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