My son is healthy and ALIVE!!!

[celticwinter2526]

It has been a very long time and I wanted to give an update. My son was born 1/22/09 at Morgan Stanley Childrens hospital in new york city at 12:41pm. ALL of his doctors were wrong his brain and skull were fully intact. While dealing with his t12 lession has been difficult it has been totally worth it. his shunt malfunctioned a week and a half after we got him home. He was in the hospital for a month and I lived there with him. Since then he has been home and doing very well. He got his dobbs put on yesterday and they are kind of hard to function with but hes ok. We found out two days ago we need to start cathing. so far I have been ok with it but I am nervous about clean versus sterile. I am also conserned that my sons inssurance will max out. The costs are very high. we have independent inssurance and we are trying to get him medicaid. we make 1000 dollars to much for ssi. he is comletely incontenet and may not beable to go to school. does anyone know about home school.... oh and what is the vcug for?

[Cubster]

WOW! My heart skipped a beat with excitement for you! What wonderful news. Congratulations on the birth of your son.

I homeschool my children, but I'm in Canada and the rules.laws are different in every state. If you check out the link below for the HSLDA (Home Schooling Legal Defense Association) you can get all the info you need.

http://www.hslda.org/hs/state/NY/default.asp

[Barb]

Oh wow! I got chills when I saw your name. What an amazing miracle!

Homeschooling has been discussed alot lately. You can read here: http://spinabifidaconnection.com/showthread.php?t=305&highlight=homeschool

But don't worry about that now. You have a very long time to worry about that.

[janjanwhit]

congradulations! You have been in my thoughts and prayers. I am so happy for you both!

[smoop]

That's wonderful that things are going well with your child! Don't worry about cathing-- it's very easy and it will take you no time to get used to. As with anything-- fear of the unknown can be hard to deal with. But once you try it you'll be surprised how easy it is. Will you be using new catheters each time or reusing? We only use new as our insurance covers it. I do know of people that only get 30/month so have to reuse them. Unfortunately, I cannot share the best way to clean them if you use them again.

And I will be homeschooling my daughter when she's ready (she's just turning 4).

[Gymp]

That's really,really good to hear !!!!

Gymp

[angel]

I am so happy to hear he is doing so well!! You seem to be doing well yourself.

VCUG is a test the urologist does using a catheter and dye. It is used to look for a reflux (urine that goes back into the kidneys from the bladder) and if they find reflux to measure how much. I hated the test but i have a lot of feeling. most people it doesn't bother at all.

angel

[celticwinter2526]

this is the area i havnt been able to learn about yet. if he has reflux what does that mean for him.... meds, surgery?

[angel]

A reflux is usually handled with meds and cathing. I have been on meds since i was a toddler (maybe even a baby not sure) because i had a reflux in both kidneys throughout most of my life. Mine was level 1 to level 2 which was not severe. I am not sure what the levels mean exactly. I took 2 meds at first septra and levicin (not sure if that is the correct spelling for levicin). I took that till I was 9 years old. They then switched me to macrodantin which I took until I was 29 and then I started back on septra. I don't get UTI's very often and the reflux has not been in both kidneys since my teens. I have always had reflux in at least 1 kidney but it switches between the left and the right, no clue why that is.
From my understanding the meds is to keep you free of UTI's because if you have reflux you don't want infection shooting back up into the kidneys. I am 32 and have slight damage to the left kidney because for 3 years i didn't take my meds cause i couldn't afford them and had no insurance. I was sick a lot and had to make several trips to the ER because once i got sick enough (usually kidney's bleeding) they would give me antibiotics through and IV and i was good for a little while.
The reason i didn't take the meds because of insurance is being disabled private insurance don't want anything to do with me. I couldn't get it where i worked and eventhough i was a single mom making a whopping $6.50 per hour i didn't qualify for medicaid anymore. Believe it or not i made to much money.
Now that I am back on my meds (and have been for the last 5 years) I am doing fine.
Hope that helps

Angel

[LisaJoy]

It has been a very long time and I wanted to give an update. My son was born 1/22/09 at Morgan Stanley Childrens hospital in new york city at 12:41pm. ALL of his doctors were wrong his brain and skull were fully intact. While dealing with his t12 lession has been difficult it has been totally worth it. his shunt malfunctioned a week and a half after we got him home. He was in the hospital for a month and I lived there with him. Since then he has been home and doing very well. He got his dobbs put on yesterday and they are kind of hard to function with but hes ok. We found out two days ago we need to start cathing. so far I have been ok with it but I am nervous about clean versus sterile. I am also conserned that my sons inssurance will max out. The costs are very high. we have independent inssurance and we are trying to get him medicaid. we make 1000 dollars to much for ssi. he is comletely incontenet and may not beable to go to school. does anyone know about home school.... oh and what is the vcug for?

Thank you so much for coming back to share this with us! What a tremendous blessing. I am so happy for you and I'm certain you are up to the challenge. Try not to worry too much about his future continence right now -- there are lots of ways for people with sb to achieve social continence, surgical and otherwise. The goal for now is to keep his kidneys healthy and the vcug will help monitor that.

I'm fairly certain that there is a separate program from SSI for children with disabilities, but it is administered differently and called different things in different states. Years ago it was called the Crippled Children's Program, but they changed the name along the way. Is there a medical social worker at the hospital that you can consult? I'd also just keep applying to SSI -- it is my understanding that practically everyone gets turned down at first.

[Dodger67]

Welcome back!
:happy065:
Medically you have only 2 priorities; kidney health and shunt function. Everything else is on an "as and when" basis.
Financial issues can mostly be solved by "harrassing" the right government office - others can advise which one.
Enjoy your baby!

[bcain]

;)

I like how you put it. Nice and concise. Perfect! :11a: