In 2001 at just 3 months old Jaylin was given the diagnosis of Agenesis of the Corpus Callosum. This means he is missing the center part of his brain. For many years we have been battling many medical issues with him, with several dr appointments at University of Minnesota. The last few years insurance forced us to stay in state so we have been going to Avera and Sanford in Sioux Falls. Just recently we have found out some not so good news with Jaylin. We will be heading to Mayo Clinic December 5-8th, 2016 for our start of many appointments there. Please keep Jaylin and our family in your prayers and we get through this very trying time.
August 22nd, 2016
Good Evening everyone! We got an update on Jaylin's MRI he did last week... Let me tell you, God must think I am one strong women... We some much unexpected news today... But first the good news, the reason for this Brain MRI was the insurance company requires it before they will pay for growth hormones, what they were looking for was tumors on the pituitary gland that can affect the result of the Growth Hormone test. We had not decided for sure we were going to do the shots, BUT It had been 2 years since the last MRI so I thought it would be good to get it checked again. Ok, back to the good news... There were NO tumors on his pituitary or anywhere else in the brain... BUT they did find that Jaylin has had with in the last two years a stroke in his frontal lobe. Trying to nail down when this happened was very confusing. Everything we were seeing we were blaming on something else, and even his weakness we blamed on the lack of Growth Hormone.
This was a smaller Stroke, and it showed that it was not real recent. They also noted some changes that were not seen on the last MRI two years ago. Some changes are happening in the Cerebellum and they are considered not related to his Corpus Callosum. So this is something we will need more information from a neurologist.
Now if you remember from a previous post, right now we do not have a neurologist. So we got an appointment with Auti's Neurologist because we really liked her, BUT the soonest for a new patient appt is Oct 31st. I am suppose to be checking in often to see if any cancellations come up.
We have noticed for awhile Jaylin getting weaker, we thought it was just because of lack of growth hormone, but now we are wondering if its not more of this. Last week when we were in Sioux Falls, we were only in Target for 10 minutes and Jaylin was so exhausted he sat on the floor and said he couldn't walk any more. We got him a wheel chair to finish out the trip, but this was very concerning to me. He has also been very restless when sleeping and extremely high anxiety
Tonight Rob and I talked... trying to figure out when this stroke could have happened. I googled the medical term for the location of it and the type. Immediately one of the causes that popped out what drowning and lack of oxygen to the brain... So we thought back to last summer when he about drown at Splash Central. It was also shortly after that that the school was mentioning him falling on a daily basis and some other issues at school. So it all makes sense that this is when this COULD have happened. BUT this is just my good guess. I guess maybe it makes me feel better if that is when it did happen, as then I would know WHY and not worry that it would happen again...
We will not know much more about this until we are able to meet with a neurologist to help us sort it all out and to see if she thinks he is at risk for more. So again Growth Hormone and his eye surgery at Mayo are on the back burner...
Something else he has had going on is the cough like symptoms he had right before he got his tonsils and Adenoids out. It completely stopped after surgery and just resurfaced a few weeks ago. We returned to ENT and they said on his previous CT Scan of the Sinuses they noted a Mucus Retention cyst and several polyps in his sinus cavity. He said those flaring up could be causing the sounds he makes. So we also have that we are treating with meds right now, and he will possibly have to have surgery to remove those also.
We could sure use some prayers for our family... between my health a few years ago, to Rob, Autumn, Reese and Jaylin's Health issues, I feel like we are drowning... Thankful both Rob and I are self employed because I am pretty sure no place of employment would put up with all the hours a week we would be gone. It seems like we get one win in the family and something else knocks up 2 steps back. The last few years have been completely draining emotionally, spiritually, financially and both our family and businesses are seeing tremendous effects from all of these trials... I know God is there with us every step of the way, and I try hard not to lose my faith in him, but it is getting down right HARD to handle this all any more... It is completely exhausting... I keep remembering though, I am thankful I still have my family, we have people that love us and pray for us daily, and I know I can look back and say that God carried us through.. I thank you all for the continued prayers..
Will keep you all posted on what news we find out.
August 24, 2016
Another update to report ! Its been a busy week around here. Dr. Guptas office (Growth Dr) Called today. And said he was ready to start the growth hormone with Jaylin, but I needed to contact insurance for prior approval as they were saying that out of pocket would be $60 a day! So I asked about the stroke that our dr said the report said, and about how that was a risk factor, they said it was just a small risk and we could still proceed. I then mentioned what Kristi (Our Dr here in town) said about the bad moles and skin cancer risk with this drug. ( Not sure if I have mentioned this before but Jaylin has had 6 moles removed in the past with cancer cells in them. ) The nurse was like "oh let me ask the dr" She comes back on and said "well if we knew he had those issues we wouldn't have wasted the time pursuing this " I was a little bit upset about that, as they never ASKED me if he had those issues before. But anyway... the dr said they will NOT be able to do the growth hormone with him because of these extra risks now.
This is all kind of a relief for me, and Jaylin of course. We were really leaning towards not doing them, but I then would second guess myself , wondering if i was making the right decision. So I believe this is God's answer to prayers... I needed to feel content with my decision and I feel God provided that answer today. You would not believe the weight lifted off of my shoulders.
Just wanted to update you all on this end of things :)
It's all in God's timing, and his answers sometimes comes in ways we would never imaging. But he is a great big God, and he will always provide, maybe not in the way we expect it, but in ways that he knows is best!
Have a great weekend everyone! Again thank you for your continued prayers :)
Just got done at neurology. She told me she could see the changes. She believes the stroke could be from the drowning incident. But the changes in the cerebellum she can not explain. She said if we weren't already set up with Mayo that would be her next step as she can't explain it. She did say Genetics is what we need to be seeing as the skin cancer, the growth issues , the brain changes and the corpus callosum in the brain is probably all tied together and there is something underlying that we are missing. You know when your a mom you get those gut instincts... sometimes you question if you are over reacting, well I'm so glad I asked for the mayo referral, as we are a head of the game. The dr told us to watch for seizures as anytime there are changes in the brain these can start. Other than that we will need to wait for our Mayo appointments. Thanks everyone for the continued prayers.