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Showing posts with the label schizencephaly

Island dolphin care sixth trip

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This year in May we celebrated Schizencephaly awareness day and noahs sixteenth birthday with two other Schizencephaly families at noahs favorite place....Island dolphin care.   So many great memories were made this year we've decided to take him back this August making sure we continue his ongoing interest in the program.

Noahs brittle bone and healing.

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Since Noah's surgery things have been on highs and lows. His healing seemed to go quickly although after a few weeks I wanted to pull my hair out and regretted it I am very glad We went through with it now. However We are not out of the woods yet. As with all special needs mom's I always see a new obstacle in the horizon. Noah still is challenged by brittle bones. Recently rushed to the E.R for possible hairline fractures in the lower ribs from his scoliosis vest. We have yet to find any fractures but he remains fussy and cringing in pain. We can only pray This is going to pass and there is nothing too serious going on for him On a great note. His communication is doing amazing. Every day he teaches me new words he is working on. And continues to smile No matter What he goes through. He is the complete definition of a warrior.!

Merry christmas

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We made it through hip surgery and Noah wants to wish all his friends a very merry Christmas!!

Life in the world of schizencephaly

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Noah's femur is healing Well according to his Dr's however from looking at his X-ray myself and showing to a few friends all in the medical field there seems to be an agreement that to us it simply does no appear to be set right. I have to question at this point if it was set this way because the Dr's felt like this is as good as Noah's life will be or if his leg simply could not have tolerated any manipulation. At any rate I see a very long road ahead for my little man and I've decided (if He is able to travel considering How it was set) to. Get a second and third opinion. I am disappointed to say the least. I sometimes look at Noah and question why He was chosen to have to live this way. Not just that but How much can his body handle. In just this year we've been through five surgeries. It's got to be as wearing to his body as it is to my heart. I wonder How much longer I get to see him smile through all the pain and I worry what his future is going ...

Button surgery

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Heading in

Stress

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It's something most of us parents never address. But it's spoken in personal emails and discussed privately.  Most of us hear a lot that we are blessed and this was a chose path.  I get that but the stress especially as our kids get older takes a toll. On the entire family. Other sibling become adults much faster because they face a reality others their age could never imagine. My son river is 15, he should be getting ready for games and playing with his friends. I did. I had a childhood. But it's not the same for him. He spends his days helping me. He is in charge of responsibilities that I could have never handled in my selfish teen age years. For that I feel both grateful and sad for what he is missing.   He has mentioned many times he will never leave home. That makes me sad. He has already planned to go to college close by to be available to help. That is a wise and compassionate decision for someone his age. But still more and more parents going through stress ri...

The not so perfect day

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The challenges of a mother Over the last few years and fighting head on with Dr's complaining about Noah's scoliosis I had to wait until he got to 51% before they would do a corrective brace for him. That was six months ago and since that day things have been moving way faster than I expected.  First last month his left collarbone became dislocated due to the brace moving him so quickly. Today we found he is having major pain in the hip area.   Xray confirms that his hip is up and out for socket. Noah has severe scoliosis and as a result surgery is too hard on his lungs. The last surgery for a G-tube nearly killed him when his lungs collapsed and a three day stay ended up being In CCU for three weeks. So surgery is just not an option at this point.  Dr and family decided on a frog like cast with a metal bar to separate the legs as that seems to pop the hip back into place. hoping that eliminates surgery down the road.   I won't lie. I ...

Easter

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Making eggs and bunny Noah

Noah is doing wonderful on his ipad.

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His control on the left side astounds me with so much of the temporal lobe missing. He loves working on peekaboo barn and flashcards and has worked really hard to answer Yes and No. I am so proud of him. Go Noah!!

Noahs gtube to mic-key button

April 17th Noah has to be put back under for his button to be placed. Last time he went under what was suppose to be a 2 day stay ended up being a three week hospital visit because of how bad Noah's lungs are from scoliosis. Hoping this one goes much smoother.

Our new website is up

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Www.Noahscart.org

Feeding tube and moving to a button

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After 12 years of eating and drinking just fine Noah had a few issues with pneumonia this year and began refusing drinks. The feeding tube has been a huge relief on mommy and Noah made some really special friends in the hospital and even Dr birnbaum came for a visit. We are so blessed!

A boy and his frog

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Our good friend Faith sent Noah a very special gift this last week. Her very own Kermit the frog was sent to Noah and he and kermie have been inseparable!!  He won't even try to go to sleep without him. Best gift ever. We love you Faith!!

Veggie tales live

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What a great time meeting the promise radio station and seeing veggie tales live in Jacksonville. Noah had a blast and we handed out 150 flyers about schizencephaly. Looking forward to doing an interview with the promise radio station!

A pirates life

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Noah's had such a great time meeting the city of St Augustine. And the outpouring of support from the community for the fundraiser has been amazing. The Marina has donated a jet ski for a raffle and a skif boat and Noah got to meet the famous William mayhem. We look forward to seeing you and Noah raising the banner saying "schizencephaly awareness" that will go port to port along the eastern seaBoard until it reaches Nokia Scotia and Noah's Schiz buddy danna for her huge awareness day kick off!

A boy and his frog

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Noah had a huge surprise today when we were leaving for the property up north a package arrived. Out jumped Kermit the frog! Noah loves Kermit and this one was sent special by another little girl named Faith with schizencephaly all the way in Alaska! What a special day and what special friends Noah has