Friday, August 27, 2010

Jacob's blindness

Just wanted to put a quick update on the boys. I know I have posted most of it in previous blogs, but for those who are not up to date hear is the latest.

1st off and most exciting was Jacob's eye doctor appointment at Light House For The Blind today. Their specialist as I said before had looked over his records before he even seen him from his last eye doctor. She documented that he was severely farsighted and said he had CVI. He questioned then why no one put glasses on him. He got to see him in person today and reviewed his chart again. Once again he was like why the hell didn't the last doctor put glasses on him. He told me he DOES NOT think that Jacob has CVI. He said the kid is severely farsighted, that he turns his eyes in to try and focus, but then if he does focus he probably sees double, so after trying to focus and not seeing anything he can deceiver his eyes have given up focusing unless stimulated (like things close to his face, lights etc). So his eyes were turning in and as soon as the doctor put the lens in front of him that will be equivalent to his glasses his eyes immediately aligned and he started kicking and smiling. This is exciting. I am not going to feel relief yet, who knows who is right. The glasses will be ready in 3-5 days and we will see what happens. The doctor said he probably has never discovered his hands or developed any coordination because he can't see without glasses and the CP on top does not help. He seems to think after a few weeks he will be a new baby. I am not holding my breath for a miracle. I will just trust in God that he allows the right people to fall into place for us to give Jacob the best chance at functioning and the best life he can have.

Another fun thing that has happened with Jacob is the physical therapist finally brought the walker/stander she has been teasing me with for months. The 1st time he was in it on Wednesday he made it move on his own. he took a few sporadic uncoordinated baby steps, but mostly moved both feet together kicked and made it glide across the floor. It was so cute everything he made it move he smiled and made noises. Today he was tired and was not so interested, but he did make some steps. I think it is a good thing. Finally something I can put him in that take the pressure off his head, back and butt all the time. The support is in just the right place that he can't arch back so far that he does a back bend. He still throws his head back, but corrects himself more. Right now he is flopping around like a fish in it. Not really doing anything. Its good for him to put some weight on his legs.

The Teeth update: Both boys equally have 6 teeth 4 across the top and 2 on the bottom. Andrew has caught up with Jacob nicely in the tooth department.

Andrew is still crawling all over the place. He still will not go from laying to sitting on his own. He does like to pull up on things . Mostly he pulls up to his knees but I have seen him pull up to his feet several times now. He is starting to babble mamamama and dadadadad more and correctly to whom he wants. Also he has heard NO so much lately I have heard him crawling down the hall going no no no no no no no LOL!!!

Jacob's speech therapist will be out for 2 months. She is going in for a big surgery on the 31st Please keep her in your prayers. God knows who she is. I don't want to give out her personal business, but her name is Julie. His last visits was this passed Wednesday. I have no one lined up to take over while she is out yet, hopefully we will find someone soon.

 It is hard to find a provider not through Early Steps (no one is picking him up for speech) because his medicaid is running out AGAIN at the end of the month. If we make ANY extra money our income is over the limit for SSI he gets $50 a month now.  I don't care about the $$$ but he has to have the SSI to get the medicaid. So when he does not qualify for SSI like the month of September he get no medicaid. Thank God I am able to keep private insurance on him, but still doesn't cover the HUGE co-pays and his huge prescription bill when you are already on a tight budget. All things will work out they always do. I have also tried to get him on CMS (Children's Medical Service) this is designed for kids who don't qualify for medicaid apparently, I have switched him to this before, but as soon as his SSI kicks back in it bumps the CMS then I am back at square one when they tell me I don't qualify. So I guess I just need to tell them I don't want the SSI :-( But medicaid does cover the best.

Ava had a good 2nd day of school on Thursday. She cried when she I dropped her off. It broke my heart :-( When I picked her up she was having fun playing with some kind of play foam stuff on the table with the other kids. She looks so cute with her little back pack and uniforms. Jack's parents have been a huge blessing helping pay for her school for now.

Light House has also been a blessing. We qualified for them to cover the cost of Jacob's glasses. The frames which I can only describe as big thick silly bands lol were $90 They are made out of flexible plastic that you can pull and twist and it goes back to its org shape like silly bands do. They have a piece of cotton at the back of them that looks like a Chinese finger trap that is meant to hold them on his face. They look silly and he looks silly in them, but that is what they use on babies and hey they are free and will help him. So no complaints hear.

It is pouring rain here and I have to get packed to go to my sister's house with the kids for the weekend. Time to start another lovely work weekend. Looking forward to my 5 days off. I really LOVE Mondays. The start of my days off and all my favorite shows come on :-) I think I finally know what I want to be when I grow up. I think I would really like to be a speech therapist. It requires a master's degree. One day. One day. Things will fall into place.

Jacob's 2nd time in the walker with his PT Eileen
Jacob in this new chair

Jacob before bed last night

Yes, this is what I found Andrew wearing when we picked him up from Aunt Tricia yesterday. Apparently I did not pack cloths for him and this is what she had on hand. I added Ava's bow for a nice touch. He makes a sweet little girl and looks like Ava. LOL

Ava ready for her 2nd day of pre-school

Andrew driving

I had a video of Jacob in his walker and it won't upload :-( So I guess this is all for now.

No comments:

Post a Comment