Ava update

[paljane8]

Hey Jen,

Sorry I missed your question? We did PT sporadically the 1st year. At around 12m PT and OT were combined 2x/wk. She still has some PT with OT but there is less emphasis on gross motor now. She recently started tippy-toe walking--we are trying to discourage that.

Nancy Eastwood
Moderator

[jjbeck]

Ava had PT today. It went well. I really like her alot. HOw long did you do pt for?

Tomorrow is the mri...eeek

Jen 33
DH Bob 36
DD Ava 4/04

htn , partial abruption, iugr?, hyperemesis

[paljane8]

Thanks for the info, Kim. I will look into it. According to the policy they don't cover genetic testing but, I am all for loop-holes!

Nancy Eastwood
Moderator

[kim]

Nancy,

Just wanted to let you know that our insurance (and it was the WORST insurance in the world) actually covered the tests when the pedi sent us to a geneticist. Preeclampsia/HEELP syndrome is related to a genetic metabolic disorder, and Ainsley was having a hard time with eating. My preg history, coupled with her heart defect allowed the insurance to pay, even though we tested for things outside of that as well. Just a thought that maybe there is a loophole, like we had.
Take care, and Janie is a doll, I loved the pic you emailed me!

Kim
Texas Chapter Coordinator

Ainsley 11/26/02-36 Weeks Preeclampsia
http://www.babiesonline.com/babies/a/ainsleyk/

[jjbeck]

Ava's appt went well. Going to try and make her a little tummy scooter so that she can hopfully get into the habit of getting around more rather than her getting overly frusterated from feeling stuck once she is on her belly.

Jen 33
DH Bob 36
DD Ava DOB 4/04

PREG related hypertension, partial abruption, IUGR, Hyperemesis

[paljane8]

They don't want to speculate until after we test. Janie's doc has his thoughts and I have mine. But, as of now we are in the dark.

How was therapy today?

Nancy Eastwood
Moderator

[jjbeck1]

Which syndrome? Fragile X?

Ava did not care for her first PT session... but she was very tired. Typically she seemes to enjoy a good baby workout [;)]



Jen 32
DH Bob 36
DD Ava 4/19/04

[email protected]

preg high bp, abruption, iugr, hyperemesis

[paljane8]

Officially Janie was dx with severe low muscle tone-the worst being in her torso and pelvis and legs. She also has oral low tone. She scores low in all 5 areas (except gross motor now) with her lowest score in cognition. At a year she scored between 3-5m now she is closer to 7-8m (she's 18m). She also has some facial anomalies that sent up a red flag to her therapists and her doc. They think she has a syndrome but, I haven't started testing yet because of insurance. Our insurance doesn't cover genetic testing which is $1,000's per test. I am trying to find a company that will cover her testing and any on-going issues if she does have a syndrome. The testing is a long process. Some of them are phish tests and they come back quicker but, others can take 45 days+ to get the results back. They explained to us that syndromes are not always hereditary. Many are caused by low blood flow. In her preg I was followed for low blood flow and low amniotic fluid for months. Also, the placenta was infected and partially abrupted. As you know personally, it contributes to low oxygen and a SGA age baby. While we are waiting, Janie meets with ST's, OT's, PT's and special ed teachers. The fact that she started walking without a brace is encouraging--she is a little tipsy but, she is within range. But, Janie doesn't respond like other children-she rarely has any reaction. For example, when they do bubbles, children naturally smile and reach out. Janie doesn't react--occasionally she will reach out. It is so few and far between, she baffles us all. She is a puzzle. Inspite of it, she is a sweetheart. She is a gift.

So, I know it has only been a few times but, how is PT? How does Ava like it?

Nancy Eastwood
Moderator

[jjbeck1]

Thanks Tanya

Jen 32
DH Bob 36
DD Ava 4/19/04

[email protected]

preg high bp, abruption, iugr, hyperemesis

[jjbeck]

Thanks Nancy.. her appt was this past Monday. It went well. She is going to come twice a week. I am very happy about that. I am eager to begin ot as well. Yes, I feel very fortunate that Avas doctor has exp w/ ot. So far it really seems like we have a really good team. It is such a contrast to the care I got when I was preg.
What is Janies DX?

Jen 33
DH Bob 36
DD Ava DOB 4/04

PREG related hypertension, partial abruption, IUGR, Hyperemesis