Back in from Houston again..he needs a procedure!

Dalton had to go see the Cardiologist this week and what I thought would be the final visit turns into a night in ICU! So I am a little obsessive about lil man and his health...ok I will accept that. Turns out, the one thing that I thought the least about was his PDA (open vessel that should close at birth or soon after). He had an Echocardiogram done right after discharge and it showed that the PDA was very "small". I was told come back in a year and we will take another look, but it should close. Yesterday the follow up Echo. shows that it is "moderate" size and Dr. Rao feels that it is time to get it closed. So on Jan. 06 he will be admited back into Hermann in Pediatric ICU and they will close the valve for good. They will insert a catheter into the artery from the groin into his heart and place a devise to plug the flow. It is an easy procedure with little risk, but I am still devastated that he has to go through anything else. Just when you think the hospital stays and procedures are behind you, reality slaps you in the face. Please pray that everything goes smoothly and let this be the last procedure that he needs. I took the picture above, apparently you never get too big to snuggle with Grandma!

Gait Training

Over the weekend Dalton got to go outside with his gait trainer. He seems to be doing well with it and PT said the uneven ground will build the strength up in his legs. I have been noticing some odd behaviors and I am concerned of coarse, but hopefull that it is nothing. He has been banging his mouth on the floor and he plays with his ears alot. We are going this week to get follow up vaccanations and final visits to Cardiologist. Pray for a safe trip and good results. God Bless!!

HE SITS!!!

When I got off work yesterday, the babysitter called and asked where I was. I said I am about 5 minutes away. She said "don't knock, just come in quietly and look at your son". When I opened the door my boy was SITTING in the middle of the floor all by himself drinking a bottle of chocolate milk (apparently he has to be persuaded). At 18months actual age, some may think so what, but Dalton has never been able to sit unassisted because of his high tone. This is huge for us, now we just have get around to the walking and dreaded potty training. Check out the picture of him eating chicken and dumplings on Thanksgiving...lol..apparently dumpling juice makes good hairdress.

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

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 .