Practice What You Preach
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| Jaden 16 months Hydrocephalus and Stroke Survivor |
This is hard to say, summer is coming to a rapid close faster than any of us would like. Before we know it there will be turkey in the oven and football on the tube. Because this is National Hydrocephalus Awareness Month I wanted to give an update on our little man. There will surely be randomness, humor and truth.
The Jaden Bear
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| Micah 5 years |
This little man of ours just keeps working hard to overcome any challenges in his life. We have been to Denver to Children’s Hospital twice this summer for checkups. The new MRI shows an amazing difference in the reduction of fluid on his brain, which is so much better than we could have hoped for. Jaden can now sit unsupported and play on the floor, without mommy freaking out about him free falling backwards and hitting his shunt. Jaden has also learned he can roll all around the house. When he first started he could only roll one way, pushing off with his good hand and over the stroke affected side, becoming stuck when he would roll into the couch or wall. Now he is able to push with his legs and scoot around until he can keep the rolling going! He is also working on sitting and scooting around the floor. We have been working on our standing skills and he is able to stand with support in front of the couch for about 2 or 3 minutes. As far as talking goes, I think it is the most amazing sound to hear him say MaMa or DaDa! He can say about 6-8 words and tons of babbling. We have also learned how to peek-a-boo, my goal is to have him use both hands, but right now he just uses his “good” hand, good hand or not I am just happy he can do it! We have almost made it one year surgery free, which is a milestone I pray we get to cross and add to. We had a visit from our vision therapist from Denver and she tested Jaden’s eyes again. He is 20/180 in his right eye. We also believe he may have slice or field or area in his right eye where he is unable to see from. So he tries to lean his head side to side to see around the slice.
Borderline
With Micah starting kindergarten this year, I have seen firsthand just how harsh and critical other parents are. I am not quite sure; maybe I am missing something here. I believe we all share common goals wealth, health, education and yeah this one blows me away everyday- fairness. I believe we are parents, regardless of medical diagnosis, looks and life choices we are so critical of each other. Acceptance is something we try to teach and preach, yet when it comes down to it we lead by example and that example is to be critical of different than and I use this loosely “normal”. I am very proud of my son for being so caring to a little boy who is in his class and has some muscle tone issues and even when this little boy could not control his legs and knocked my son over, Micah just said its OK, sometimes your legs wobble. Very proud of my son and accepting someone for whom they are and being his friend no matter what. I wish adults would take his advice and be more accepting of others by not judging other peoples situations. There is such a hush of quite that keeps disability and medical issues off conversation, people skirt around me for fear of asking the wrong question. We have accepted our life and it is OK to bring these issues to light and ask questions, become educated about something new. It is OK to ask, there is no right or wrong question. Just be open!
Medical
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| Left Picture 10-13-10 White area is fluid. Right 6-15-11 Looking Amazing! |
For the most part Jaden has been doing very well, making small but steady progress with physical therapy and occupational therapy, learning new things and overall doing amazing! We had placed an application to Shriner’s Hospital for orthopedic care and we found out today we have been accepted. This is huge news for our family! Shriner’s is amazing because they take Jaden on and regardless of our income, insurance or pretty much any other factor Jaden will have orthopedic care and muscle rehabilitation services until he turns 18. I feel so happy that we have been blessed to have this gift of wonderful care given to us. We will have to travel back and forth to Salt Lake City Utah for care, but the care and potential it offers Jaden is worth it 100 times over! We will still be making trips back to Denver every 6 months for follows ups with Neurosurgery, Neurology, Audiology and Muscle Rehab there as well.
Just Thankful
It is sometimes hard to see Jaden struggle so much to do things that come with such ease and are such gifts to other children, including Micah. Things that until I had Jaden I had taken for granted myself. I can not help but think of how glad I am for parents who never have to feel such struggle for their children. Things in life we take for granted, holding a cup, clapping our hands simple things overall. I know he can do whatever he wants to do in life, I believe in him so much more than he may believe in himself. Micah is such a good teacher and motivator for Jaden because Jaden wants to be doing what brother is doing. When I have a bad day or feel down, I keep myself in check by thinking about Jaden. How hard it must be to be stuck in a body that only half works. I think about other parents who have children who have much more complicated medical issues than Jaden. What it comes down to is that I am so very thankful for all he is able to do and all the things I know he will be able to learn how to do. I am thankful for each day with my children because it is a gift not an expectation. I also feel so much closer to parents who struggle daily with much harder situations than ours. I am apprehensive of the challenges we face and encouraged by the shear courage and strength of my kids.
Love and Health,
Micah and Jaden's Mommy
