Bills are still really tight. I have been at home on unpaid FMLA leave since 6/17 taking care of my 13 year old son Zach who had brain surgery and my husband has been on permanent disability since 2009.
Drs. appointments, PT, injections, shots, tests, etc for Zach and trying everything we can to keep things as normal as possible for him and us as a family.
And in the middle of it all his 10 yr old brother gets diagnosed with ADHD and behavioral issues. So more doctors, counselors, etc.
Zach ended the 7th grade in June with 119 absences and in the middle of it all he earned National Junior Honor Society. He's a fighter.
History: In Jan 2017 Zach had his physical and his Dr asked if we had any concerns. He mentioned he could not smell. After testing and 3 MRIs it was found Zach has a rare condition called Anosmia meaning he cannot smell anything. He has 16 allergies now and with an airborne allergy to eggs cooking is extremely scary. He can't smell fire, gases, nothing.
During the MRI it was found that he has a rare condition called Chiari Malformation Type 1 with 11mm of his brain tissue extending into his spinal column. Further MRIs showed a Syringomyelia (syrinx) or build up of excess spinal fluid at T3. The Neurosurgeon recommended surgery. He has been suffering muscle weakness, dizziness, migraines, headaches, balance issues and leg spasms. Zach had a Decompression surgery on 8/15/17 at Hasbro Childrens Hospital. They removed a piece of his skull to reduce pressure on his brain, cut into the dura, cauterized one of the tonsils and put two implant patches in and got nearly 30 stitches.
He was also diagnosed with a rare condition called Kallman Syndrome which means his body can not produce puberty hormones so he started hormone injections last month.
After all this he has made it to Life Scout and is working on his Eagle Project he is dedicating to his cousin Hannah Wertens who passed from complications of her cancer treatments and Jaime Crowley his former Vice Pricipal and Little League Coach who passed away this year as well from a rare form of cancer. After all the doctors this little spitfire wants to be a doctor. My kids inspire me in different ways but wow, Zach ---- just wow!!!
I use to think his asthma and the allergies were the worst things. Now all this. His spirits are good. He is not scared, a little nervous, but nothing he will admit anyway.
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