Striving!!

Well Noah is still doing good. He is growing like a little weed. Got weighed today and he now weighs 14lbs 7 ounces! He loves to eat now. Cannot feed him enough. Still taking everything by bottle! We only use the tube for venting and medicines! He gets the advantage of not having to taste them! LOL! We both ended up with the flu this past week. It was aweful. I have never been so sick in my life. I couldnt keep anything down and had to go to the ER on Wednesday and have fluids pumped into me. Noah got it on Thursday and we were in the ER until 1am with him. But we are both better. He is still doing ok with lifting his head. He isnt fully doing it yet. But Physically therapy comes in every Thursday and we have Occupational therapy coming in now on Wednesday afternoons

Speaking of Occupational Therapy I have started an online College Penn Foster going to school to become an Occupational Aide. I figured we had such a difficulty getting it for Noah in York County that they must need help and it would be a good field to get into cause then I would be able to help Noah as well. So I'm excited and I started this week. I'm just waiting for my first books to come in the mail.

Noah has found his hands and always has them in his mouth. He has THREE teeth on top AND TWO teeth on bottom now. 5 teeth at 9 months old. I cannot believe he is almost 9 months. NEXT WEEK! Time goes by to quickly! He is finally looking into mirrors and finding interest! He is getting there. Finally!

Life is pretty good right now. Still working for CLYNK and its such a great company to work for. Very understanding. Very friendly. And I enjoy going to work everyday! I think I may try to stay with this part time when I get my certificate or degree for Occupational Therapy! Well thats it for now. I try to keep you all updates as often as I can!

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

Happy New Year

Hello Everyone!

I hope all had a wonderful christmas and I hope everyone has a wonderful New Year. Noah is striving. We have had an issue with Gas and not being able to get some gas out of him. Because if the Nissan surgery he cannot burp therefore when he has gas we have to vent him using his G Tube. Sometimes lately we cannot get it all out and he is having spells where he is in alot of discomfort. But we keep working on it and finally we can get it out for him. But the good news...the great news it WE HAVE NOT HAD TO USE THE TUBE TO FEED HIM FOR 3 WEEKS! Thats right Noah is finally drinking ALL of his bottles without a fight. In fact he is drinking more that the 100mls that he is expected to drink. More like 120 to 130mls. He doesnt want to stop drinking now. He is back to having cereal mixed with fruit now at bed time and occassionally in mornings too. He also is drinking juice because there are some days where he doesnt want to stop eatting. He has occasions now where he tries to hold his own bottles too. :) Physically therapy is working with him lifting his head...and although he still doesnt like tummy time he is doing much much better holding his head up. We are on our way! Its exciting to see hsi progress.
The rest of his blood tests come back on Jan. 17th and I am holding my breath and praying. I cannot take anymore bad news. So keep praying the prayers are working.
Hope this finds you all Happy and Healthy!

A Cup of Good Cheer!

Just to give everyone a quick update. Noah has had a double ear infection for the past week and 1/2. So things have been a little more complicated. But after the first medication was not effective they put him on something a little more stronger and that seems to be helping. Physical therapy is coming in once a week and working on his head control and he seems to be really improving on holding his own head up. He is gaining more weight and is beginning to become that chubby little baby we have all waited to see.
Christmas is coming and the tree has presents under it already for the little guy and myself....cannot wait for Christmas morning to spend with the little guy.
That is all I have at the moment. Please keep the prayers going and thanks for everyone's support I couldnt do it without all of you.
Love to all.
Happy Holidays!
Beth & Noah

Two Posts in One Week

Two posts in one week you all must be proud!

Noah is doing well. I have dropped his feeds to 100mls right now until he gets over his ear infections. But he is gaining weight. Very exciting he has outgrown his 3-6 clothes and now is wearing 6-9 clothes and they actually fit him! All the prayers are helping.

I'm very excited for his first christmas...been putting him in cute little xmas oufits the last few days. Took some pictures with him today. He loves to look at the lights on the tree...and he is becoming more vocal when awake. Working on his neck muscles giving him tummy time. He doesnt like it very much but we have to get those muscles working.

He has moved on like I said in the last post into size 2 diapers....I thought we were going to be in 1's forever. But he is so much more alert now and talkative. He still doesnt know what sleep is. He is still getting up quite a bit. Right now we are going through a stage where he doesnt want to sleep in his crib he wants to be with me. That isnt going to last because although I love the extra cuddle time...I get better quality sleep when I'm the only one in my bed. But lately it has been either let him in or spend all night fighting with him. I'll chose the getting a little sleep.

Other than that everything is going well. Its a little more work with this pump but so worth seeing the improvements. Thanks to all that is praying it is so helpful. And we need all the support and prayers we can get. The lord hears us! I just know everything will turn out ok. I just gotta have faith!

I'm trying very hard to keep everyone updated and trying to get on as often as I can. But between work and home life it gets a little hectic sometimes. Dont stop checking because I'm not going to stop typing!

Love to you all!

Road less bumpy!

Well my little man is doing pretty good. No scares lately. Well thats kinda a lie, but that is a long story....but Noah is doing well. He has a double ear infection right now that we found out about on Friday because he decided he couldnt drink the 110ml's and was fighting us again. So Grammy took him to the DR.'s office before they closed (mommy was at work) and the DR said both ears where red. Later that night (here comes the scary moment...all brought to you by mommy) Friday night I went to put Noah in his crib for bed and as I lifted him into the crib I caught the G Tube between me and the crib without realizing it and when I layed him down yanked it right out! He screamed and I got upset....and we couldnt get it back in. So we ended up taking a trip to SMMC to have a DR put it back. And let me tell you that the DR's say "oh its easy if it happens just put it back in..." That wont happen. You really have to push and the DR doing it said I wouldnt have got it in myself because he gets upset and pushes with all his might his stomach out and it was really hard to get it back in. I felt like the worlds worst mom! Let me tell you.
But he is doing well.... in 6-9 clothes now and Size 2 diapers! Very excited! Got his 6 month pictures done. Wouldnt smile for mom but the pictures are adorable!
Love to all! Keep those prayers going..... Mommy is praying for miracles!