DS health issues and need prayers! and input.

cjrogers · #1 07-13-2008, 11:10 AM

Hi all:

My ds came home in March. Ever since he's come home he has some issues that my "mommy instinct" told me were wrong. So finally, we are trying to get to the bottom of everything. After a barium swallow test last week we found that my son never learned the sucking reflex. He doesn't suck! He bites on the nipple and it pours down his throat, which he quickly aspirates into his lungs. This accounts for the chronic respiratory issues he has. He is also very delayed in his gross and fine motor skills. After 4 months of therapy, this child still cannot crawl and barely ever makes a sound - so there are some issues. We are working on it, but need to see what is going on in his brain in case it's more than a case of a premature child who was not stimulated in foster care.

So this friday we are going for an EGD scope, PH Probe (poor guy has to have a tube down his throat and nose for 2 days) and then a brain MRI scan to see if there is anything neurological going on. I am mostly worried because he is going under general anesthesia for these tests.

So I am asking for your prayers as I am so worried about this. I am also asking any of you who might have had this type of issue/issues (lack of reflexes)to please let me know the outcome.

Thanks so much--

dana3262 · #2 07-13-2008, 11:14 AM

Best of luck with everything - hope all turns out OK. I'll be thinking of you.

**kelceesmom** · #3 07-13-2008, 11:18 AM

We'll keep you in prayer.

kathleenmag · #4 07-13-2008, 11:22 AM

Will keep you in our prayers
Kathleen

EZ2Luv · #5 07-13-2008, 11:25 AM

Praying all will be well with your little man. That probably has a lot to do with your nipple woes early on. Poor little guy.

EZ

guatemama94 · #6 07-13-2008, 11:55 AM

I too will be praying for you! I'm so sorry that he's having issues.

Have you contacted ECI? (Early Childhood Intervention) They are connected with the school districts (slightly). PM me if you need more info.

I'll be thinking of you and praying too!!

azguatemom · #7 07-13-2008, 12:02 PM

My thoughts and prayers are with you. Remember, when your Higher Power leads you to a cliff, you will either learn to fly or be caught by the HP.

I don't have any experience with the issues you are facing, but, in general, with medical events, I suggest that you have a buddy with you whenever you are interacting with the medical professionals. This person can take notes for you and interject questions that you might be too overwhelmed at the moment to ask. Also, before you leave any hospital, office, clinic, etc. make sure that you either get copies of all the tests and reports, or sign the papers necessary to have them copied and sent to your home.

As a mom, I know that there is nothing worse than knowing your child is not well. Eat right, get rest and let others take care of you! God be with you and your DS!

carolynpep73 · #8 07-13-2008, 01:14 PM

You've got my prayers. Good for you following that mommy instinct. It's rarely wrong...

Trishandkids · #9 07-13-2008, 01:31 PM

My thoughts and prayers are with your family.

KMatthews · #10 07-13-2008, 02:53 PM

I pray all goes well with Cole, and I'm happy you followed your instint to have him checked further. Please keep us posted on Cole.

hesabanana · #11 07-13-2008, 03:06 PM

You are both in my thoughts. Please keep us posted.

DeeVee · #12 07-13-2008, 03:09 PM

Cheryl, I will be praying for you and your family. Please keep us posted. (((hugs)))

ProspectiveSingleMom · #13 07-13-2008, 03:39 PM

I work at a center for the developmentally disabled, and there are a lot of things that could cause the types of delays you are talking about. Hopefully you will find something out when they do the tests so that you will know if there are any specific interventions/treatments you need to be doing, but if they don't find anything then it could very well be a result of his prematurity (especially if he received inadequate medical care when he was born). The thing to keep in mind about developmental delays is that they are just that -- delays. Just because he isn't doing certain things now doesn't mean that he will never do them, it just may take him longer to get there. Early intervention programs can make a HUGE difference in helping the developmental process along, so definitely look into that once you have a better understanding of what is causing his problems.

cjrogers · #14 07-13-2008, 04:46 PM

Thanks everyone. I really appreciate it. We have been with the early intervention program since April for OT, PT and developmental services - so we're on it. We are just looking for something "medical" that might be causing his issues. Thanks again so much, I really, really appreciate your thoughts and prayers.

Cheryl

SmileLaughLearn · #15 07-13-2008, 04:53 PM

Your family is in my thoughts and prayers.

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