Tuesday, March 5, 2013

Making Progress....

Preston is heading up the March of Dimes campaign at his work. For Nathan's and Owen's first birthday I made some videos of their first year in different stages. The first video of their life in the NICU. Preston showed these videos at their kick-off meeting. The videos got Preston to thinking about a time early in the boys life.

As many of you may remember Preston and I spent Thanksgiving 2009 and the four days surrounding it living in a parent room at the Brookwood NICU. Nathan was so sick his doctors could not guarantee that at any given point he had more than 15 minutes to live. One of his NICU doctors who was in his 21st year of practice at the Brookwood NICU said Nathan was the sickest baby he ever had to survive. Thinking back at that time, compared to today...just puts a big smile on our faces as to how well Nathan is doing and how much joy he has for life.

This joy that Nathan has he carries in to every part of his life. This morning he had an hour of Occupational Therapy. He did very well putting in puzzle pieces (he can match the pictures and get the pieces in and out by himself), putting puff balls into matching color cups, playing Connect Four, stringing beads and many other fun games. He is making good progress with his pincer grasp, baring weight on his right arm and just making good progress on his fine motor skills. This afternoon Nathan had an appointment with his orthopedic surgeon. About six months ago Nathan's Physiatrist, Dr Law, suggested Nathan needing to have his hamstrings lengthened to allow his legs to straighten completely giving him a better opportunity to stand, walk and crawl. We decided for a number of reasons to move forward with a second cochlear implant and put the hamstrings on the back burner for a bit. So today we met with Dr Doyle, the ortho doc, to revisit the idea of surgery. Nathan seems to be declining and is really tight he felt good going ahead with the surgery. On April 15th Nathan will have leg surgery. He will have his hip flexers, adductors and hamstrings all lengthened. He will also have his calf muscles botoxed during surgery. After surgery he will be in the hospital at least a day. He will be in a lot of pain for a few days but is fine to return to school in less than a week. He will have casts on both lower legs for about 3 weeks and will also wear knee immobilizers. This all sounds like a lot but we are excited to really be able to help Nathan to continue to progress with his standing and walking.

Owen had a great morning at Occupational Therapy too. Connect Four is definitely a big hit with him. He also really enjoyed the ice cream stacking game and of course his favorite thing ever...playing with balls. Later this morning Owen had another eye gaze trial. The rep from Tobii came to town and Owen used their eye gaze devise again. Owen did an incredible job. His therapist, the Tobii rep, and his mommy :), were all so amazed at how well he is doing. Everyone believes that cognitively Owen is on par with any three year old but is just behind in his expressive language. They believe the use of the eye gaze device will bridge the gap now and help Owen catch up more quickly.

Logan enjoyed some special time with Memommy, CiCi and PawPaw Bill today while Nathan, Owen and I were at the doctor.

Logan is very excited about our trip. This afternoon he told me we only had 3 1/2 days left!

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