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 past 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

Results

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 rides..lol....look as his face.

DIAGNOSED

Dalton was diagnosed with Diplegic Spastic Cerebral Palsy on Sept. 17th. Despite the news, he still amazes me at how capable he is. He can pull up to a standing position, and he tip toes around the couch without me helping. He doesn't mind the braces for short periods of time, but he is not exactly crazy about them. He has the funniest laugh, and is chatter-boxing like crazy. My friend has a little boy with a speech problem and she understands alot more of Dalton's chatter than I do. Just the other day he said "put me down mama" I didn't catch it but she did, and when he said it again it made since..lol. He eats like a grown man. He likes mash potatoes and gravy, beans and rice, scrambled eggs with cheese, avocados, spinach, and his favorite snack is wheat crackers. I have really lucked out on the feeding aspect of having a preemie. I blog with other micro-preemie moms and feeding problems seem to be one of the major issues with former preemies (once again Dalton has to be different). We go for the MRI in the morning and I am nervous about the sedation due to his history of apnea. My aunt (who is a Pediatric RN) keeps reassuring me it will be fine. We also are having a Nuero Physiology test done so that we know what areas of his development we should devote more time to, and a Barium Swallow Study because of his refluxing. So we have a busy couple of days coming up, and once again I am reaching out for prayer. Please pray for good results for Dalton this week. God Bless!

GROWING UP SO FAST!!

Dalton is 15 months now and weighs about 30lbs. He has glasses that he is wearing to prevent a crossed eye. He is such a determined little boy and gets into everything. He does seem to have some developmental delays due to the tightness in his muscles (that has kinda been a concern from the begining). He is being fitted for braces on his legs, and I am hoping that will correct some of the problem. He is crawling and pulling up, but not trying to walk just yet. He has such a personality and has my trademark attitude...lol. He is the light of grandma's life and my whole world. I think back on all we went through when he came into this world and I cant imagine what life would have been like without him. I can still see the little Hispanic lady's face every night when I am putting him to sleep. She was truely an angel and I am so grateful that we crossed paths that night. I have recently signed up to work with the March Of Dimes in thier walk to prevent babies from being born like Dalton . Please help me reach my goal www.marchofdimes.com/dalton1lb11oz .

Sorry it has been awhile since update...Dalton is doing so great. Since we were released he has gained 5lbs which puts him at 12lbs! He has learned how to roll and is starting to crawl. He has such a personality, and spends alot of time snuggling with grandma. November was kinda rough...he got a virus and we ended up back at the hospital. A week after we were realeased for that he came down with RSV (even with the vaccination). He did really well though and only spent two more days in the hospital. I dont take him in public and thier are not any kids in my family so I think he got the RSV when he was at the hospital the first time. ECI comes to the house and they think he may be behind in his developmental goals. I have to make an appointment with a nuerologist to follow up with the one he had at discharge. He does alot of the things that the therapist is concerned about when she is not there, so I am not worried that there is a problem. He just dont like her...lol. I am excited about his first Christmas and have spent too much money allready. I am back online and will try to stay updated more often. Hope you have a HAPPY HOLIDAY!!! GOD BLESS!!

GOING HOME!! THANKYOU JESUS!!!

We are going home today. Dalton and I finally get to start our life together. God is so good! The MRI showed that everything looks good (no bleed). They think his PDA has closed because they cant hear the murmur anymore. He passed his hearing test and he is being circumcised before we leave. He is being released without any medication and with a monitor that only I felt he needed. My son is living testimony that with prayer and faith anything is possible. His primary nurses come to wish him off. This is a part of their job that must be very hard for them. There is no way I could ever repay them for the love and support that they have shown Dalton and me. I love you ladies!! This one day has made the last four months worth it. I am so proud of my lil man! Thanks for all of the prayers. God Bless everyone!

NO TUBES....NO IV!!

We are on the 8th floor. Thank You Jesus! He is nippling all of his feeds and taking three ounces at a time (he is such a lil piggy). He still has the occasional brady, but they are getting less and less. Now when I look at him it is hard to believe that he was so tiny in the begining. He looks like a normal, healthy baby. He seems developmentaly correct, but I am still nervous about the MRI that he is due for. He has some tightness in his muscles and I am worried about CP, but I know God will pull us through anything. Please continue to pray for my lil boy.