Re: Re: Our baby girl

[Guest guest]

Hi Trish,

I hope your trip goes well - it sounds very interesting. Look forward to

hearing more about it on your return.

, Adie, Holly & Bradley

[Guest guest]

Hi Everyone,

I have been reading all your e-mails and it really gives me chills as to how

much the kids seem to have in common at times.

When my son Colin was a baby he cried all the time too. The Drs said that he had

colic. He took meds to help him for that. It did not seem to do a lot of good.

Colin cried that whole time he was awake. He did that everyday from the day he

was born. He did not smile, coo and even seem content at all. I was soooo

stressed and upset . Colin has an older sister , who was 2 at the time, and all

she could say about her baby brother was " he cries. " It was a very hard time in

our lives, and I have to say would never want to live through it again. But it

does get better!! Colin's crying started to slow about 4 months. He had good

days and bad days. I learned to do things through the crying and to try and

" tune it out. " The hardest part for me was bonding with him. He was such a hard

baby with the crying, and he wasn't any easier to feed. He would arch his back,

cry through the bottle, and had a terrible time burping. When he finally learned

to burp at 3 years of age we were so proud!!LOL!

Colin is 7 years old now and in 1st grade. He is doing very well. He had his

first seizure at the age of 5 , and his second last Sept. He is not taking any

seizure meds at this time. He takes Concerta for ADHD, which helps his so much

with the flow of his thinking. Our Neurologist said that Colin's brain may have

re-routed itself to aid him in his thinking. Colin has severe PMG all over his

brain, but is able to walk, talk, ride a 2 wheel bike, go to regular school, and

is a loving great guy who LOVES his friends!! The Drs say there is no

explaination for his abilities. By looking at his MRI they said they would

expect to see a child who could not do any of those things.

I just wanted to share with everyone that anything is possible.

Lots of Love,

Sandy ( mom to Colin 7 yrs, PMG)

Re: Our baby girl

Trish,

Boy are you bringing back memories!!! Max was one of those babies

that cried ALL the time. We would have to walk/bounce/give pacifier

etc all at the same time and it still didn't stop him from crying. I

had to nurse him lying down for the first six months as he arched so

much and it was the only way he would nurse. I want to tell you

things DO get better. It took a long time but Max learned to nurse

while I sat up. He learned to nurse for comfort, etc.. Max would

sleep on my lap for his naps 2-3hrs at a time as it was the only way

he would nap. The biggest advice I can give is take each moment as it

comes. Max certaintly taught me to live in the present moment. I

prayed constantly just to survive the day. Also be sure you get some

time away so you can be rejuvinated. I worked two evening a week and

it was a welcome relief. Max has 4 older siblings but his oler

sister was only 16 mos old when he was born. I often felt like she

wasn't getting enough but you all somehow by the grace of God

survive. Now at five she's doing lovely.

We also had Max go to cranial-sacral therapy. For us, this has

been a God send as she often could tell what was bothering Max and he

began to get some relief. This didn't happen right away but over

time it became more obvious.

The other thing I want to mention just for whatever it's worth.

At about a year and a half Max had his first obvious seizure. This

turned out to be a blessing in disguise in some ways. The reason I

say this is because he was put on Tegretol and we finally had a much

calmer, much happy little boy. In hind sight I think he was having a

lot of neurological irritability and the Tegretol really helped him

with that. Now obviously, seizures are not a blessing but sometimes

they can give meds for neurological irritability. We never wanted to

give Max meds either, but in hindsight it really helped him and since

then he has had moments of neurological irritability and or seizures

and has had to have med increases or changes.

Today Max is 3 1/2 and most of the time a very happy boy. He is

unable sit, roll, hold his head up for long, has seizures, a cortical

vision impairment, and is nonverbal BUT he goes to school and loves

it. He's learning computer programs and having fun with them. He

loves to wrestle, swim, hear music, etc.. He adores his siblings. He

loves the wind in his face and he's got a great smile! There was a

time I only hoped that he would smile and know he was loved. He's

doing much more than that now.

We will keep you in our prayers,

I hope this helps,

Joanie

[Guest guest]

Sandy - what a wonderful story, what an inspiration.

, Adie, Holly & Bradley