I am getting so excited For Christmas! We debated putting up our tree, at the time I was just feeling a little bit humbuggish....I am so glad we did, I am now filled with the Christmas spirit.
Finals are finished! I am so proud of myself for finishing my first semester. Woohoo! Only four more to go...
So here is the part I have been putting off, and trying to dodge. It's a tough topic for me to discuss so perhaps it's just better to write it and not have to tell everyone individually. Though it may not seeem to be a big deal to some, keep in mind that if it were your child you may feel the same way.
A few weeks ago we went to a follow up with J's lung doctor. She had some great concerns about Jonah and his development. Jonah does display some signs of being autistic, though he is NOT autistic...he has been placed on the spectrum due to so many similarities with Autistic children. Examples being, banging his head, sensory intergration problems, high pitched squeal, clapping, hand flapping,and finally not talking. (though he does do some babbling) I have known for a while that something was not right with Jonah, but nothing could prepare you for a doctor, a doctor whome you have grown to love and trust tells you this, "I think Jonah may have suffered some brain damage, for lack of a better term" My heart fell right onto the floor, along with any hopes I had for Jonah. She explained herself "Jonah almost died, they wanted to withdrawl all support from him Jessica, when a child is that sick and has CO2 levels as high as 200-205 you don't leave that state without any problems, Most children I have seen who have been that close to death do have brain development issues. I feel this is the case with Jonah. I think it's time to meet with a neurologist."
I waited a few days, I cried a few days, then I called and set up an appointment. I was schedualed for some time in January. My good friend/nurse at our FP dr called in a rescedualed it for December 14th (Monday)I was so ready to call the whole thing off. I am at this point so overwhelmed. I talked to a friend and decided it needs to be done. Jonah and I went up to the hospital and met with the doctor. Jonah was so well behaved I was affraid the doctor would not be able to see what Jonah ndoes or how he acts...I was so surprised. The doctor told me he definatley thinks there is something going on and would like Jonah to have an MRI of his brain. He said that what the lung doctor had said makes perfect sense. He also felt that Jonah was showing signs of ADD, but said accurate testing cannot be performed this young and when J starts school he should be tested. The doctor said some stuff that just left me feeling empty, he spoke of long term whether or not Jonah would be able to live independently or not, whether or not he has some strange disease called "storage disease. He left the room to make a follow up apointment and my head was spinning! I could have just lost it, but I didn't. I picked up Jonah brought him to the window that looked over the Salt Lake Valley, sat him on the window seal and just held him tight. I came to this reasoning, (as Jonah continuosly banged his head against the glass) I cannot change Jonah, He is who he is. All I can do is Love him and make sure he is given an equal chance in life. No matter what I will always fight for him and make sure he is getting all support that he will need to live a real life. After I made that commitment this all seemed so much more doable. Im not saying it's easy, it's not. Im not sayingh my heart is healed, it's not. Im saying that I know as a family we will make it through. With all of the support I have I will make it through.
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Many congrats on finishing your first semester. It is the most amazing thing I've heard.
ReplyDeleteWe are getting excited about Christmas too. I think the entire nation needs this holiday.
This is very discouraging and serious news about Jonah and I am very sad. I totally understand why you would hesitate to share this news and I applaud you for being brave enough to do so. We'll just have to wait and see how his life unfolds. Without a doubt, he has the best mommy in the world. You are such an angel. We love you so very much. Lots of hugs and love to all four of you.
Oh, Jessica,
ReplyDeleteYou are amazing for tackling school. Good job on that. You are so right about Jonah and he is so blessed to have you. I know God thinks so highly of you to entrust Jonah in your hands. If you need anything, let me know.
Hi Jessica, well you sound as ready as anyone for the task at hand (raising your son -- and daughter, too!). perhaps there are some really cool medical advances that could be used for Jonah? not quite the journey you expected, i'm sure, but you seem like you can deal with all the unexpected turns you'll find on this road less traveled.
ReplyDeleteand in the meantime, have a merry christmas!!
Sarah
Jessica,
ReplyDeleteI wish I knew this was going on. I totally can relate to what is going on and I hope you can work through it. I know how hard new diagnosis can be and how scary it seems. I have come to the same realization with Josh... I just love him and do what I can for him and pray the rest all works out for what Heavenly Father has in mind for him. You are doing such an amazing job and you are so wonderful for them. Just the fact that you are having such a hard time with all this news is a testament to how much you love and care for your children. If you need anyone to talk to, please let me know. I hope you have a great Christmas Holiday and you can enjoy being somewhat 'normal'. I think you finishing school with all you have going on is a true miracle!!! Happy Holidays to your family!
Hi Jess,
ReplyDeleteI know EXACTLY how you feel. The day they told me Kade was on the autism scale my heart fell right out the bottom. The little boy I had expected wasn't going to be and now this new little boy was. It really sucked. My heart is with you and know that there are lots of us out there that know just how you feel. We should do lunch! =)
AND... congrats on your first semester! What are you going to be?
Hey, if you ever have questions email me and I will call you. When Jax had his brain injury they wanted to withdraw life support. I said no way. His brain damage is all over his brain. Babies brains compensate so well for areas that have been damaged. It will take some time for his brain to do that. My 4 year old will probably never walk, or even sit up, but his smile is coming back. His vision that was damaged seems to be getting somewhat better, and he's much more interactive. It will be ok, I promise. He may need extra help, but he'll do great, you'll see!
ReplyDeleteAnytime friend. This baby that we want to adopt only has parts of her brain, they've given her a death sentence. but she eats by mouth, tracks with her eyes and makes baby noises. They don't give our kids enough credit. I can't wait to see what Jax continues to accomplish. And a lot of the reason he is so slow at regaining things is because he has tons of seizures. If we could get the seizures under control he would continue to improve.
ReplyDeleteMerry Christmas!!