update on my daughter

[Guest guest]

My daughter just had her 3 yr old check up. Finally hit the 20 pound mark!!

I was reading the emails to Stacie about the eating struggles..boy I can

relate. She was also diagnosed failure to thrive. To keep her weight on

her and to help add a little more our pediatrician recommended giving her

PediaSure as she can drink but because of sensory issues there is very

little she will eat. She also recommended making milkshakes with icecream

and the PediaSure for even more fat intake.

Good news! She has been discharged from PT after 2.5 yrs. She still can't

jump or skip but is working on it. And I was able to get her speech

increased to 3x's a week at 45 min. (also getting OT 1x a week)

I struggled with the choice of leaving EI and going into the school system

and dealing with IEP's or putting her in private preschool and getting

therapy privately. We finally chose private where she also has someone with

her that knows sign language so can understand her. She signs for the

critical things she needs to tell you...like more food, or she needs to use

the restroom, etc. Anyway, I am very pleased with our decision! She is

really blossoming being around other kids her age and is learning alot. And

even though she still only has 4 words she is vocalizing MUCH more. We have

her in with 2 yr olds because we didn't want her overwhelmed with the 3's

who are much larger than she is.

At some points this has been overwhelming, like at one point when we were

told they didn't know if she would ever walk, but it will get better! At

this point I still don't know if she will ever talk well or when she will

even start talking, but I know even if she has to sign that everything is

going to be ok and she will be able to live a full and happy life! She just

was potty trained and that was a HUGE moral booster for her. These kids

struggle with so much it is so important to really praise them for what they

do accomplish.

And last but not least, my mom bought her the movie, Trumpet of the Swan,

for her birthday after reading about it on here. If you haven't seen it yet

you need too. It is very good. She was really watching and paying

attention to it, just wish I knew what she was thinking sometimes.

Hannah , mom to LeAnne (3, severe apraxia, hypotonia, DSI, asthma) and

(4 and a great big brother always praising her when she attempts to

say something or crawl, etc)

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[Guest guest]

Hi Everyone,

Just wanted to give you an update on the kids.

This is week #2 with the new diet. We have to make some adjustments. It

was very hard on my daughter for the first week. But, we could see

immediate results however. I could see results in my son after about 7

days.

My daughter has been feeling her best for about 5 days now. My son has to

my surprise calmed down. How wonderful it is to just sit and play with him,

or just read him a book, first time in over 4 years he has just sat.

Reports at the school is he is a changed kid. How wonderful for him.

My daughter not one stomach ache or trip to the ER for 2 weeks now. This is

also a blessing.

Both kids as well as all of us are haveing 3-4 normal bowel movements a day.

This a miracle for the kids. They have not had a bowel movement in over 4

years that didn't require pain or laxitives.

It is hard and expensive to make the changes, but at this point I don't

care. It was well worth it. I have tried to add somethings back in to the

diet here and there, but have found it makes all of us sick. So we are

sticking to the diet for awhile without adding, because I like the kids

feeling this way, as they love it too.

We hope by time my daughter goes to see the GI specialist at the end of the

month, we will have positve results, and her condition will have cleared

itself up. Pray for her please. She needs all the help she can get.

Thank you once again all of you who helped me figure things out.