Thursday, November 12, 2009

Just In From Houston and Venting!!


 We just got home from Houston. This time we had to go to Synagis for his vaccanations and to his Opthamologist. He got his RSV, H1N1, and Flu vaccs, after alot of leg work on my part. It amazes me how complicated it is in this country to get crucial vacs for children "LIKE Dalton". All they need to know is that he is a former 24 weeker and they should be throwing them at him, but NO lets make it as hard and as expensive as possible. Forgive me but I am really taking time out to vent. I have heard alot of things in the last few weeks and it hurts and makes me mad all at the same time. People can be real nasty with thier opinions of how you should be a parent. I have been called "momma munchausen" and things I probably don't want to know. I have been told that I am "over compulsive" about Dalton's development and his health and that "he is not sick anymore, he is fine". Thing is, Dalton appears to be "perfectly normal". He is chubby, alert, strong and overall seemingly healthy. He doesn't fit the typical description of a special needs child so people can't understand why I would say he needs special treatment. "Why do you make so many trips to Houston, he looks fine to me?" "Why is he still on the bottle, he is too old for that...his teeth are going to rott?" "Why is he still on formula, that isn't necessary at his age?" "Why don't you let him go to public daycare like other kids?" It is really hard to answer questions like that without going in to this long drawn out spill about how former preemies are not the same as other kids, no matter how much they look the same. By the time you explain it , most people have allready drowned you out anyway. They just act like you are wanting pitty. These are the people who didn't hear a handfull of Neonatologists telling me how "your life is never going to be the same after having a micropreemie", and "if he makes it" your baby's future depends on how protective of him "YOU" are as a parent. These people also have no clue what silent aspiration, ataxia ,IVH, PVL, BPD, low immunity, intestinal perfforation, corrected age, and sensory and motor problems are. They don't have to schedule thier life around handfulls of therapy appointments each week. They themselves were blessed with term, healthy babies. They don't schedule doctor appointments for much more than checkups and snotty noses. Forgive me for sounding angry, I am jealous! However, I am proud to say that I have self educated and I am very protective of Dalton because that is what is in his best interests. He is doing "better than most" and I am very proud of him, but I cant lose sight of the fact that he is not the "same", as term babies despite others efforts to sway me. I have had to accept that other people pass judgement regardless of the facts, and I will have to be forgiving. Thank God for preemiemomsblog.com and others who can relate, without them I would truely feel all alone in my world of preemiedom. Please continue to pray for Dalton and my sanity.
                                                                    Sincerely,
                                                                      Momma Munchausen

4 comments:

Katie said...

I'll tell you what Lynzie's doctors tell me. He's doing as well as he is because of you! It sucks that you had such trouble getting him his vaccinations and Synagis. That doesn't make sense! I've never had any problems getting Lynzie (though she doesn't get Synagis any more, she did her first two years). When I get down, I just remind myself how lucky I am. I have a beautiful little girl, and there are so many people out there who would do anything for that.

nancy said...

Hey! Thank you for coming by my blog. The journey is a long one.. so here are some of the answers to your questions.

How old was Ty when he started walk independently? Ty was just under 2 when he walked with a walker. He walked with no walker soon after but we use his walker when HE chooses.

He didn't sit up on his own till he was 9 months adjusted with LOTS of therapy and lots tip overs. So he was one year old non sitting kiddo! Its hard but Dalton will do it.

We found that being on medicaid we still got all the thearpy we needed. In fact it was easier to GET it because the insurance covered things like that and private insurance denies it. Ty didn't get botox until last year. His botox worked but not like I had thought it would. It showed small gains in how stiff he was and it seemed to help with his toe walking. We are trying Phenol shots in his legs in december where we are also serial casting him. Stay tuned to see how the results worked. But we honestly had better therapy and results being on state insurance ( we were on long term care in Arizona) than we are getting with private insurance here.

GOOD LUCK. EMAIL ME any time. IF you have chat let me know

nancy.brown05@gmail.com

Anonymous said...

This post is one that I think any preemie mom can relate too.
Tristan looks "normal" but has so many issues that a mother of a full term baby couldn't understand.
So I am right there with ya.
Only the mom of a special needs child can understand what you are going through. Sent ya a email too!
BTW Dalton is SOOOOOOOOOOOOO Cute!

Anonymous said...

You go girl do whatever it takes to get the necessary treatment to keep your little one healthy.

Ignore any and all negative comments and tell yourself if they fully understood, they would congratulate you for being so pro-active.