Dixie.......

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Dixie.......

Postby annofm1 » Tue Jun 10, 2008 1:22 pm

I didn't want to hijack the blog thread. But I just read your blog. WOW! What a story! I can definitely see why it's taken a while to get through your emotions. How scary Wade's birth was. And, on a different note, the blog looks great. I'm so glad you started it.

And it amazes me how much we have in common. I am from Virginia. Our little men were born within just a few days of each other. And they were both 8lbs 12oz. And, of course, they have such similar delay issues.

Too bad you don't live close, we could be coffee buddies.
Ann- Hypothyroid & Endometriosis Me- 37, DH-38
DD- 5, DS- Born 5/28/07 w/ Hemophilia (stroke @ birth & 5months with severe brain damage)
Angel @ 34wks 9/25/98
Angel @ 9wks 5days 7/14/06
http://eliahjames.blogspot.com/
http://sensoryintegrations.com/

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Postby dixiechicken » Tue Jun 10, 2008 1:43 pm

Good to hear from you! You're the "friend" I mentioned in my blog! :wink: Did you figure that out? :D

Where in VA are you from? I've often thought how nice it would be for us to live near each other too! We're definitely in the same boat. BTW, I think of you whenever I watch All My Children. On of your earlier avatar pictures really reminds me of Kendall on that soap opera! I tried out your Wal-mart cart suggestion a little while back. Not too bad, but then I didn't have anywhere to put my stuff! :roll: However, the cashier was really nice when I told him I didn't want the pillows.

Still struggling with ECI to get some sort of bath. Now we're battling with PT. The OT told us last week he needs some sort of splints for his legs because his ankles roll in. She said she didn't want to step on any toes because that's the PT's department. So, we called her and she told us she can't do that. He has to go to a specialist! I'm really hoping to get a referral to Scottish Rite in Dallas from my pediatrician.

Anyway, hope all is well with Eliah! Thanks for the post!
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby annofm1 » Tue Jun 10, 2008 2:03 pm

I'm from Yorktown (Hampton Roads Area). In fact, I am trying to convince DH to get the house up for sale by Halloween so we can move back. The Children's Hospital of the King's Daughters is there and they have a great Hemophilia Treatment Center. And I would be closer to family.

Sorry the Wal-Mart idea didn't work out very well. We just now have the same problem you are talking about. We got Eliah a forward facing car seat (he is so much happier), and a stroller (the Maxi-Cosi Foray). The stroller was super expensive, but supported his torso so well, and he can still face me. I have been pushing the shopping cart and dragging the stroller behind me. It works well, unless Eliah needs me to carry him too. Haven't figured out how to deal with that yet.

We are still trying to get the bath seat too. It still has to go through our insurance, then Medicaid, then the Dept of Disabilities and Special Needs. We will probably get it by the time he's 4 years old. :)

Oh, and when OT told me that Eliah needed thumb splints, they gave me the website and we just bought them ourselves. Then we ordered them through the agencies to have a back-up set. I think it was about $15 for each one. Not too expensive, but it allowed us to have a little control with his progress, because it takes forever to get anything approved.

Also, since we qualified for the Dept of Disabilities and Special Needs, they will pay for the video tapes for the Anat Baniel therapy another poster had mentioned. Apparently, they can use up to $500 for Eliah without having to justify it. We are also talking to Social Security tomorrow about disability income for Eliah. I think we are utilizing every program there is out there.

And is your PT through the school system program? If so, they should have a few different Physical Therapists to choose from. You may have to go on a waiting list, but it may be worth the wait to change.

Anyway, so glad your spirits are up!
Ann
Ann- Hypothyroid & Endometriosis Me- 37, DH-38
DD- 5, DS- Born 5/28/07 w/ Hemophilia (stroke @ birth & 5months with severe brain damage)
Angel @ 34wks 9/25/98
Angel @ 9wks 5days 7/14/06
http://eliahjames.blogspot.com/
http://sensoryintegrations.com/

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Postby dixiechicken » Tue Jun 10, 2008 2:51 pm

OMG!!!! I'm from Hampton! Graduated from Kecoughtan High School and Mary Washington College in Fredericksburg. My mom teaches elementary school in York County. I've been trying to convince my parents to move here, but my dad loves the bay and the trees. Plus, he has his own business. DH really wants to move there and help my dad. I really like Texas though. If we did go back, would probably be the Williamsburg area. However, the cost of living here in TX is amazing!!!! I don't think we could afford to move back! :roll:

I told my OT about Anat Baniel, and she's checking it out. It would be nice if we could use some of her methods with the OT. There is an Anat Baniel office about 2 hours from us. I was really amazed with what I saw on the videos. I'll probably end up ordering myself too.

My new pediatrician has the same concerns I do about ECI. I just think we need something a lot more intense than what we're getting. They're just overworked. Our area is growing so much, they don't have enough therapists to cover everyone!

I might have to look into that stroller. That's another reason I would like to get into Scottish Rite. They have the hefty duty stollers and such at no charge!! My nurse practitioner at my old doctor was going to refer me, but the pediatrician said Wade wouldn't qualify because it was for orthopedic issues. Um, hello??? He can't sit up, stand up, crawl or walk!!! The website says they deal with cerebral palsy! :dunno: So, needless to say, that's one of the reasons we have a new pediatrician.

I've got a plan!! Why don't we both move back to VA and we can start an advocacy group to help parents find what they need! :wink: That's my long term goal right now. I'm doing a small part of that by teaching special education, but I feel caught in the middle sometimes between what my heart tells me is right for the student/parent and what the school system deems "right". :?
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby annofm1 » Tue Jun 10, 2008 3:56 pm

The cost of living here in SC is awesome too. We have a 2600+ sq ft house that we bought for $116,000. In Yorktown, it would be $400,000. Ugh. But I really do believe it's better for both kids to move back. I also want to live around Williamsburg. But it will all depend on where DH gets a job. My father owns his own business there too, so DH wants to join in and help him too. How weird are our lives?

I have said that I want to be there by the first of the year. I think you have a great plan for an advocacy group. I'm in! Whatcha waitin' for?
Ann- Hypothyroid & Endometriosis Me- 37, DH-38
DD- 5, DS- Born 5/28/07 w/ Hemophilia (stroke @ birth & 5months with severe brain damage)
Angel @ 34wks 9/25/98
Angel @ 9wks 5days 7/14/06
http://eliahjames.blogspot.com/
http://sensoryintegrations.com/

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Postby dixiechicken » Tue Jun 10, 2008 8:45 pm

That's about where we stand price wise on our house, but a little smaller. We do have a pool, which would be hard to give up! :roll: DH family is here, so we do have help, but I think we would have more around my family. I just don't know...
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby annofm1 » Wed Jun 11, 2008 5:02 am

Yeah, DH's family is here too. And I don't know if we would get more help in VA, but there would be more family.

As far as the pool goes, they have those in VA too. :) They also have the ocean. We could spend our days on Buckroe Beach. I don't know if you've seen it recently, but they have spent a ton of money renovating it.

We are planning to move to an apartment initially, until we find the best neighborhood. They have pools and playgrounds. And Portsmouth has the BEST Children's Museum. I could go there every day!

And of course there's Busch Gardens and Water Country. And Yorktown Beach. And Colonial Williamsburg. And the best Chinese Take-out ever on Jefferson Ave, behind the Chi-Chi's at Denbigh Blvd. And they built a new "center city" at Oyster Point. It has tons of shops and streets to walk.

Should I continue, or are you convinced?
Ann- Hypothyroid & Endometriosis Me- 37, DH-38
DD- 5, DS- Born 5/28/07 w/ Hemophilia (stroke @ birth & 5months with severe brain damage)
Angel @ 34wks 9/25/98
Angel @ 9wks 5days 7/14/06
http://eliahjames.blogspot.com/
http://sensoryintegrations.com/

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Postby dixiechicken » Wed Jun 11, 2008 8:30 am

:lol: I have an old high school friend that I found last year on myspace. She just had her third baby a couple weeks before I had Wade. I get so jealous when I read her comments about meeting up with others and going to Water Country practically everyday! :wink: And I really do miss the beach. I went back to DC awhile back, and I have to say, I really miss the diversity and "culture".

Our house here is only 3 bedroom, so if/when we decide to have another baby, we will definitely outgrow this one. That will most likely make our decision for us. We've been in TX for 5 years, and I still don't know my way around too well! :oops: There's just something to be said for familiarity. I can picture every place you just mentioned! My mom is always talking about the shops at Oyster Point! If it were up to DH, we'd be there yesterday!
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby dixiechicken » Wed Jun 11, 2008 11:31 am

BTW, what/how are you feeding Eliah now? Wade is still primarily on formula with a couple servings of pureed foods. Still gagging on anything "chunky". Didn't know if you guys are having feeding issues.

Also, how did your appt with geneticist go?
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby annofm1 » Wed Jun 11, 2008 2:41 pm

Hey! Thanks for asking. The Geneticist was awesome! He was such a great listener. I am supposed to drop off a blood sample in the next week, as soon as they tell me how much they need. They are going to do a DNA analysis.

And as far as feeding, the doctor told me to reduce his formula intake to about 6-8oz a day. So, I was doing a 5oz bottle in the morning, and an 8oz at night. Then he would drink water with a little juice during the day. And as far as table food goes, he would gag on everything but the stage 2 foods. Until I gave him cake for his birthday. It seemed like he figured out how to eat, as soon as I gave him something he really wanted. Since then, we have been experimenting. He has eaten PB&J sandwiches without hesitating (no reactions). He likes meatloaf, baked beans, chicken fingers, fig newtons, nutri-grain bars & pizza crust. Yesterday he tried chinese food and LOVED it.

Once he figured out how to chew, he has wanted a lot of crunchy things. We give him Kix cereal, Cheerios, and the Gerber veggie puffs. Now he is completely refusing formula, he even gags when I put it near him. So I have to find something else. I might try the Neocate Jr, I heard it smells like cake. :)

I think our biggest hurdle was finding something he liked enough to motivate him. He still will only eat either stage 2 or table food. It's like the chunky stage 3 just confuses him.

And you just need to come on back to VA. It is such a great place to raise kids.
Ann- Hypothyroid & Endometriosis Me- 37, DH-38
DD- 5, DS- Born 5/28/07 w/ Hemophilia (stroke @ birth & 5months with severe brain damage)
Angel @ 34wks 9/25/98
Angel @ 9wks 5days 7/14/06
http://eliahjames.blogspot.com/
http://sensoryintegrations.com/

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