Our Little Jacob

This is a blog detailing the daily struggles of having a child with Spastic Quadriplegic Cerebral Palsy. My son is 1 of 2 surviving triplets. My son and his identical twin brother Logan who passed away at 6.5 months old had Twin to Twin Transfusion before they were born. They were delivered at 28 weeks to try and save all 3 of their lives. I have a hard time connecting with other parents raising children with severe disabilities so, I thought I would branch away from my other blog to blog just about my son and his special needs in hope of reaching out and supporting other moms dealing with similar issues.

Saturday, June 9, 2012

Moving Forward

I am loving getting to stay home with my baby boy now. It has been a month since I worked and his baby sister turned 1 month old yesterday! We have been dealing with all the government paper work over the past month. Prior to me not working, we qualified for no help with Jacob due to income. As I have ranted before I don't expect the government to support my child, but with high health care costs unless you have a high income it is nearly impossible to cover the co-pays and procedures!

The great thing now is Jacob does qualify to get his SSI back as of June 1st. We had to fill out all the paper work again to have him deemed disable again since it has been more than a year since we qualified. He was approved in less than a month PRAISE GOD! The biggest part of him getting his SSI back was to get his medicaid back to help cover his costs. He is covered under my husband's private health insurance and now medicaid will cover 2nd!!!! It was nice not having to pay $150 to pick up his prescriptions the other day. Best yet, all the procedures he had done in May are COVERED as well. They started his medicaid from May 1 instead of June 1st!

We have an appointment next week with a surgeon to move forward with Jacob getting his fundoplication. Not sure when it will be done. We have been holding off on getting it done for so long because we could not afford the cost of having it done. I look forward to the day I don't have to worry about him vomiting every day and worrying about his lungs. On this note not sure if I mention the results of his test. We were told that the Ph Probe study indicated he did need the Fundo. The gastric emptying study on the other hand came back normal according to the nurse even though the tech told my husband he faild the 1st hour and nearly failed the 2nd. His GI doctor has been out of the country so hopefully we will be able to tell me more about this later. They are not going to refill his E.S.S which DOES make him vomit less...

We had his IEP for his new school this past week. We met with his teacher and the physical therapist at the new school. I pray things start to click with him there. He will have constant stimulation from 9am-2pm Monday through Friday. Then we will start getting him out patient therapies since he will no longer have any early intervention services after July 17th.

I ordered him the next size up in the Seat2go. It should be here on Monday. I am hoping I am not wasting my money and he fits better in this one better!!!

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