[SuzBerg]

Tell us the most frustrating thing to you about having a medically fragile child. We all love our kids and they are true blessings for us! So not that you find your child frustrating (although some days I do) but what's frustrating for you to deal with?

Is it the doctors? Is it your insurance coverage? Is it all the appointments? Or maybe it's the people who just don't "get it".

If your comfortable tell us a little about your kids; needs, age, talents etc.

[SuzBerg]

My daughter E is a miracle! She has a complex congenital heart defect, polysplenia, failure to thrive, possible mild cp and a paralyzed vocal chord (and some other stuff I can't remember). I have really been able to deal with her medical needs - it's easy actually! She is smart, funny and very sweet.

The most frustrating thing to me is sometimes the doctors (and I truly LOVE our doctors - they're the best). I could take the same child to 10 different doctors and get 10 different recommendations on what we should do. It drives me crazy . I also hate the appointments when they say "Yes you're right she does seem worse, come back in three months and we'll see how she is then".

I'm sorry if I sound negative it's just been a loooooong week!

[Lylac]

OH a chance to brag on my babies!!!

I'll start with my daughter first L has Shaken Baby Syndrome @ 4months old,Seizure disorder. Left side Hemiparesis,Choroidal Ruptures, Retina tears, LLD (leg length descrepancy) Secondary Pigmentary Degeneration, Cerebral Palsy, Perthes Disease and ADHD WHeeeeeeeeeeew thats alot for one lil girl

And you'd think that she'd be a total mess. I know I would anyways. But she's the sweetest child that I have ever seen. I'm not saying that because she's MINE either.


My son B has Shaken Baby Syndrome@ the age of 6 weeks old. Actually it was more than just being shook. He was picked up by his ankles and used like a bat against a wall. So along with SBS, he has bilateral skull fractures, Seizure Disorder, MonoParesis X2(right leg & left arm) and is still being evaluated by more specialists. He's 4 years old, but developementally he's 9 months old. His vision is also at 9 months old.

He's making progress everyday!!

The most frustrating thing for us right now is having to switch a couple of doctors. But other than that we normally don't have any problems. Other than car fever. We have 12 appointments next week, but luckily 6 of them are at the same place and back to back.

I see my kids as normal. It may not be normal for me or you. But it's normal for them. My kids were not given any hope of doing anything. But they sure fooled even some of the best doctors in TN.

Just looking at L, you'd think she was a regular kid, even talking to her, you'd say the same. The only problem is, is that she can't use her left hand..open & close it willingly. Now with B you'd definately spot a BIG difference. He can't walk yet, nor talk (much). But his little brain is sharp as a tack. He knows so much more than what he can relay. With a little time and love, he'll conquer his life challenges.

Will he be perfect? He already is to me.

[momraine]

Mine fall more into the catagory of physically disabled than the medically, but I figure I will post here anyway.
Lets see My older two don't have that many problems really, even my one with Aspergers is doing so well almost no one even knows anything is different, they just think he is a little odd. He has learned to cover well and to copy behavior and body language well enough that no one notices.
My daughter has two prosthetic legs, however if she wears pants no one can tell. Because of one of her legs being wide she does not wear pants very often though. Her legs right now are bright green and blue kind of a tie dye pattern. My son is missing both legs completely and one arm completely. The problem both of these kids have is that people assume that thier limb difference is accomanied by either a hearing problem (people talk to them very loud, but they won't speak up for dh who has a severe hearing loss and hearing aids!) or they assume they mental issues, and talk to them like they are two. (they are both 7) Now my son does only look about three. People give me dirty looks if I correct my kids in public, like you cannot disclipline a kid in a wheelchair? The fact that my son also has some attachment issues and is a very manipulative kid adds to the issues. Anyway, this is my biggest frustration, other people's attitudes.

[Lylac]

momraine, I know exactly what you mean!! Especially about the correcting them in public. With L I can normally just give her a look and she calms down. But B hasn't learned about the "momma means businees look" yet. So I just bend down and whisper in his ear, usually that does the trick.

He HAS learned the "momma means business" tone in my voice though.

[mommytoEli]

the most frustrating thing was when ds was a baby, we almost lost him b/c we were not a medically fragile home, and our ffa did not take medically fragile babies. when the county called at 3 months old to take him b/c he was healthy, he had just been diagnosed that day with....let's see how many i can remember: severe reflux and cow's milk allergy, sleep apnea, lazy eye, heart murmur, seizures, hearing impairment.....i think that might be it. anyway. i was SO frustrated b/c first they were going to take my baby b/c he was healthy, then they were going to take him b/c he was sick. they were esp worried b/c...and they had neglected to tell me this, e had a brother who would be a little over 1 year older...he had all the same probs at birth....and died 4 months before e was born. luckily for me, by the time the county finished their investigation...e's seizures ceased, the murmur was mysteriously gone, and his hearing impairment ended up having an easy fix with some tubes. it had also been 6 months, and in this county after 6 months, they will not move the placement. phew. he will be 4 tomorrow and is completely healthy now, but it was so frustrating almost losing him b/c i wasn't licensed to care for him. I've learned my lesson. Next time, no ffa...straight county....take the extra classes for medically fragile.

[aldes]

I think the most frustrating thing for us was "other people".
Dd was a micro preemie with a host of medical issues. During her first few years, we heard a lot of, "Well, she should be outgrowing that by now" or "so & so was a preemie & she/he's just fine". We were "spoiling" her & "letting" her rule our home. She just needed "discipline".

The diagnoses journey was the hardest, most horrible, & exhausting time of our lives. Knowing that people thought it was all her fault or all in her imagination on top of the day to day stress nearly put my wife in the hospital.

Some things did get better...those that were probably preemie-related. But it turns out dd is on the autism spectrum, has a low IQ & major language issues. Throw in a dose of high anxiety over every little thing.
Now after 3 years in public preschool & 3 years in public elementary, FINALLY the SpEd teacher is admitting seeing some of the behaviors we see. FINALLY dd's social issues are being noticed.
However, other parents still look at us like we have 2 heads when we try to explain dd's differences. "Oh, but she so pretty!" (Huh?) It's a problem sometimes when we know she is not being looked after as well as she should be b/c she "looks so normal".
Thankfully, we can now brush off "other people" as too ignorant to bother with.