We are Home Sweet Home

So the EEG showed that Noah is in fact having seizures. He is having what they call Infantile Spasms. Theses siezures are really hard to control. Right now they put him on a steriod because steriods have been known to help these siezures. Although I have noticed that he is having fewer of these episodes I have also noticed that the few that he has seem to last at least an hr. at a time. Which is an improvement but when he was having them before they were spuratic in duration some lasted only 5 minutes others lasted an hr. I'm not sure if its the medication because this is one of the side affects to the medication but Noah is extremely irritable. He screamed all day yesterday. He now weighs 13 pounds 12 ounces which is a big deal and he is teething again. Last week he cut his top front tooth and this week he is trying to cut the one beside it. So that could be another reason he is irritable. They say that there is two drugs that we could try. We are trying this one and I am praying and crossing my fingers that it works because the other option is injecting the other drug. It is only an injectable drug. I dont think that I could put a needle into my 8 month old son everyday. It was hard enough to put a needle into myself when I was pregnant. They say that these siezures he is going to have for the rest of his life. He will be on medication for the rest of his life. They could get worse they could get better. We have to wait and see and that is the hardest part. Nothing makes me feel so helpless than when he is rolling his eyes in the back of his head and jumping and there is nothing I can do but hold him and try to comfort him while he goes through the spell.
Can you believe he is 8 months old today? Where does the time go? Its been a long 8 months and hard but he is so worth it. He makes my life complete.
Good news!!! While we were at the hospital I asked if they had any results back to his blood tests and.....
His Fragile X Syndrome, Lissencephaly, Urine Organic Acids, Miller Diecker, and Chromosomes tests all came back with NORMAL results which means there is no evidence of these syndromes. Which is really fantastic news!!! I was having nightmares we were going to get bad news..... Thank the Lord!
This however means we dont know exactly what his brain malformation will consist of at this point. We went to the neurologist on Wednesday and he said that the part of the brain that is the most affected is the middle back part of the brain that controls all the parts of the brain. The speech, hearing, motor etc. That part is almost flat meaning that the nerves are not all there and instead of being ribbony it is almost flat. We dont know what this means for him it really is up to him and the Lord. Physically therapy and occupational therapy and all those special services will hopefully help. The neurologist says that it is going to be like he has severe cerebal palsy. He is trying to say that this happened in my sceond trimester but with as many ultrasounds that I had throughout my whole pregnancy and the end of my pregnancy you would have thought they would have found it before he was born. I am looking into it. Research is going to be done and we will find out.
That is all for now. Hope this finds you all well and happy. Please keep praying. I need a miracle and your prayers are helping....I have proof with this little piece of paper that says my son doesnt have any of these syndromes or diseases!
Love to you all. Keep checking I'm going to try to be better at blogging this year. I just dont get alot of time with my son because of work and life situations so I try to spend as much time with him when I'm home that I can.
He is doing very well holding his head up still needs a little work but he is getting it. Physically therapy is trying to get his sitting up on his own..and then we are working on getting him to roll as well....lots of work....she is hoping to see him holding his head 100% in a month.

Back Again in 2008

So hear we are again. We have managed to find our way back to MMC. Noah is still doing very well with his feeds- drinking all 120-130mls by mouth. But recently I told you that he was having spells in which he would roll his eyes and jump with his arms. Well I finally got tired of the doctors telling me to wait. Last night he had 5 spells in 6 hours. So I called the doctors and brought him to MMC Emergency this afternoon. After video taping his episodes and showing this to the doctors they think Noah is having seizures. Tomorrow they are going to hook him up to an EEG (electrodes that tape to the head to check for abnormal or seizure activity. Most likely we will leave here with Seizure medication because the doctors are pretty certain that it is seizures.....
Things like this really upset me...I've been telling them for almost a month about these spells and they kept passing it off as nothing....."gas" and didnt want to bring him in and see him sooner....now almost a month later - siezures! Hello!!! Doctors!!!! It makes me so outraged inside....to have to always fight and always be proved right and they should have listened sooner.
Alright well it is off to that comfy little sofa bed again (Kidding not comfy......lol) and I'll keep you updated. We love you all and hope you all had a wonderful holiday season. Noah and I did.
Will keep you all posted....
Hope people still check this out....I know some do.
Love to all
Beth