Saturday, November 29, 2014
I probably should be sleeping or cleaning since every one is sleeping but I am typing this instead. Since I have had children I am not too great at sending thank you cards. Please don't take it personally. I actually have some on my desk that I wrote out, addressed but never mailed. I don't really like my handwriting too much so this task is difficult. I have no idea if anyone can read my handwriting, if I got too distracted by something I might missed a word,ect. I really do appreciate everything friends and family for all their support towards my family. I appreciate everyone that was there to support us during the difficult time with our 2 lbs 2 oz baby boy, Abraham. People jumped in like we never even left and came back 2009. We also appreciate the support given when Glenn was deployed over seas for one year shortly after Abe's 1st birthday, the baby showers that have been given for both boys, the meals that families have prepared when I had a surgery in 2010 and 2011 and when we brought Abe home in 2009 and Luke in 2013. Also the trips to Seattle friends have made to support us when Abe had inpatient stays. We appreciate being able to stay at the Fisher House during Abe's many inpatient stays. Those that have babysat when I had medical issues myself and those that have agreed to watch Luke so I can give more attention to Abe at his appointments. We appreciate the nurses, doctors, other medical professionals (PT, OT and ST) and teachers that have helped maximize Abe's potential. I am thankful I have the education, knowledge and assertiveness to advocate for him or to find a resource to help me advocate for him. Abe often tests my patience limits and can be aggressive towards me and Luke but I am truly thankful that he is here. The aggressiveness really worries and concerns me. He is getting stronger, bigger and is actually 36 lbs finally at almost 6 years old. I have been praying that his aggressive, violent behaviors subside. What is interesting is he is a prefect angel for other people other than his parents and brother. I am trying to get his constipation under control which could potentially cause some of the tempers. I am also working on getting him ABA services again. I still need to fill out the paperwork for the new company. He is using sentences now and throwing in some sign language too. Other times he has a difficult time expressing himself. I often hear "I need to poop or use the potty" but it is an excuse to get out of necessary tasks like eat dinner or go to school. No idea what excuses he will have when he is a teenager. This week he saw neurodevelopmental ARNP. She was very impressed with his ability to sit on the exam table without a lot of support. I was so worried about the surgery because it involved cutting nerves in his spine which can not regenerate. Over all we are very satisfied with the results and have no regrets. The only difficult part is managing a very busy toddler at appointments. I don't blame him it is probably very boring for a sibling especially at the medical appointments at Seattle Children's. It is not the norm to have a 2 hour round trip commute. Most other toddlers might attend a play date, go to story time at the library, stay home with a caregiver most likely the mother, then eat lunch and have nap time. The only regret I have about the surgery is I wish we had done it sooner but Abe did not show the criteria that was necessary for it. Seattle Children's does not just preform this procedure on every kid with CP and tight muscles. I absolutely don't regret having a second child but it is a lot to manage. When the boys mature and get older it will be easier to entertain them at the appointments. On occasion Luke is part of Abe's PT sessions. It's actually pretty cute at Mary Bridge when Abe rides the trike down the hall ways and Luke runs in front or behind him. It is still a commitment on my part as a mother to drive him to and from all his post surgery PT appointments.He still requires the muscle relaxer Baclofen but only once a day now instead of twice a day. He seems to be getting stronger every day. I finally got him to ride his trike last weekend. Since he crashed it in September it was difficult to convince him to get back on it. He is willing to ride a trike at PT sessions but not at home. I probably should get some sleep now. There is a lot more than I am thankful for that I am sure I will remember right after I hit publish on this.
Posted by Karen Goddard