Bills are totally killing us with me not at work since end of June taking care of my 12 year old son Zachary since his brain surgery and my husband is on permanent disability. $4000 behind in bills and just had to do the first oil fill of the season which doesn’t help. Christmas is just not happening right now this year for the three boys (15, 12 & 9). Hoping to pay everything off and provide a little Christmas for the boys after everything we have been through and will continue to go through with Zach.
Everything went into repairing the car to make it safe to get back and forth to everything we need to for Zach. Drs. appointments, PT, etc for Zach and trying everything we can to keep things as normal as possible for him and us as a family.
I STILL cannot get Zach back to school and the 504 meeting last week week at school did not go well.
History: Back in Jan 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. Worse yet 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 and further MRIs showed a Syringomyelia (syrinx) or build up of excess spinal fluid. The Neuro Surgeon recommended surgery. He has been suffering muscle weakness, dizziness, migraines, headaches, balance issues and leg spasms. Zach had a Chiari Malformation Decompression surgery on 8/15 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 further diagnosed with a rare condition called Kallman Syndrome which means his body can not produce the hormones for puberty so he will be going for treatment for that in the next 6 months.
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. He was in the hospital for 5 days and various stages of recovery with a full recovery expecting to take as much as six months to a year.