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 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.
                                                                      Momma Munchausen

Sunday, November 8, 2009


The MRI showed what they would expect of a preemie with a Grade II I.V.H.. There is P.V.L. (withering of the white matter), but nothing to be overly concerned about. The Swallow study showed that he does still have some silent aspiration when drinking thin liquids, but not when thickened with nectar. NO MORE REFLUX!!! We also seen a Physical Medicine doctor and she had nothing but wonderful things to say about my lil champ. She doesnt want to use oral meds for his tone and she said he doesnt need Botox injections either. She said just keep wearing the braces and doing the therapy and he is going to do just fine. She couldnt believe how strong he is in his arms and legs and how he is talking in sentences. I think after a long couple of months and some dreaded doctor visits, I am just going to enjoy my son and the Holidays. I discovered Halloween night that Dalton loves hay as his face.