MRI recheck

Alvin is a flipping rock star! We arrived at Akron Children's bright and early this morning.

We decided to attempt a non-sedated MRI, instead of the scheduled sedated one, today. Alvin did amazing! A few wiggles, but nothing too bad.

Prior to his MRI, he got to visit with Sophie, a therapy dog at ACH. Alvin loved every minute of it. Such a great program!

Then, after the MRI, it was over to the NeuroDevelopmental Science Center and the neurosurgeon’s office for the MRI results.

And...... minimal to no growth!!! Yay!! Recheck (MRI) again in March. Still don’t know what this is, but we’re going to watch it.

He did have some growth of some FASI (UBO) in his cerebellum but those are consistent with NF and aren’t overly concerning.

Fifth Grade Band Concert

Alvin had his first ever band concert tonight. He was so nervous in the weeks leading up to it, but he did great! While he chose percussion, they only learn notes and play the bells until later in the year.

Now we focus on Monday’s MRI and neurosurgical appointments. 

Yes, I know it's been a while.

Due to a very rude person, I stopped posting on here. She will one day get what is coming to her and I hope I'm there to laugh in her face.


Anyway, I just dont have it in me to catch up on everything that's been going on since the last post. I just want to hit on the major development. Alvin had an MRI of his brain and orbits. The results came back with a few gliomas (tumors) and hundreds of UBOs (unidentified bright objects) all over his brain. According to the neurologist, "His brain lit up like a Christmas tree." Because there was cerebelluar involvement, she is concerned. Normally they dont see these UBOs in the cerebellum. His entire speech development center is also involved. Both with the UBOs and with small gliomas. She has pretty much said we'll be lucky to get a few more words out of him, but he most likely is never going to talk. He may surprise us, but it's not looking hopeful.

They are going ahead with the 'idea' of it being neurofibromatosis, but he has to have a few more things in order to be clinically diagnosed with it at this early age. Ya'll, that's NOT a good thing. According to my NF mentor, being diagnosed under the age of puberty normally means they have a more severe case of NF.

Just as a background, the most common effects of NF1 are:
Visual impairment/blindness
Optic gliomas
Lisch nodules on the retina
*Seizures
Headaches
*Brain tumors
Blood vessel defects
Learning disabilities
Mental retardation
*Macrocephaly (oversize head)
*Speech imparments
High blood pressure
*Cafe au lait spots
Fibromas
Scoliosis
Early or delayed puberty
*Digestive tract issues: pain, vomiting, chronic constipation or diahrea
*Delay in learning to walk or talk
*Short stature
Severe itching
Cancer
Pseduoarthrosis (false joints)
Bone deformities of the legs

Those effects marked with an * denote issues Alvin currently has. So you see, we're dealing with something that could potentially have a severe impact on Alvin's life. No, he hasnt been clinically diagnosed with it. He's not old enough and we havent been to the optometrist to see about the lisch nodules. If Alvin does have lisch nodules, then he'll meet the clinical definition for a child under puberty. Problem being, the nodules dont normally show up until after the age of 4. So, the neuro is saying to treat him like he does have NF1, because of all the markers so far, and if need be, wait til he's older to get the clinical diagnosis.

Ya'll I'm scared. I'm upset. We go back on Monday to the neuro to talk more about these gliomas and UBO's and to talk more about how to help with Alvin's other issues.


PS, to the bitch: Cant fake MRI results bitch. Get a clue before you spout your mouth off.