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| Robbie's Story
Robbie was born January 29th 1999, after a short induced labour. His heart rate was dropping after contractions (late decelerations). The Doctor tried to get him out with a vacuum that didn't work so they took me into the delivery room and he was delivered with forceps and a vacuum. When he was born he had no heart beat. The doctors began CPR and intubated him. His apgars were 0 at 1 minute, 4 at 5 minutes, and 6 at 10 minutes. His blood gas at birth was 6.76. He was weaned from the ventilator after 1 day and all of his reflexes were normal. He remained in the NICU for one week. When we left everything appeared to be normal. At his 6 week NICU follow up, everything was once again normal. We did not need to attend the clinic again. Our lives were starting to settle down, but it was the calm before the storm. In September Robbie was diagnosed with trachea malacia. He had a video fluroscopy at The Mayo Clinic and we were told that he would grow out of it by the time he was 30 months old. Once again we were feeling confident that everything would be all right. On November 3rd we went to our pediatrician for Robbie's 9 month check up. The Doctor was concerned that Robbie was not sitting up yet. He referred us back to the Neo Natal follow up clinic. We went there a week later. We arrived at the clinic and went in to see the Doctor. They watched Robbie move across the floor. I picked him up and held him cause he was not co-operative. They tested his reflexes and told me that he would never sit or walk. He had cerebral palsy and I better go and look at some adaptive equipment. I was floored. Robbie had been seen by 5 doctors by this point and not one of them had ever suggested there was a problem or that he even needed to be followed. We sought a second opinion from a developmental Pediatrician. He thought Robbie might "grow out of it". So we thought we had averted another tragedy. Then 8 weeks later (January 2000) he told us that in fact Robbie did have cerebral palsy and he was "not so sure" that he would grow out of it. Talk about a roller coaster. We had an MRI done in March 2000. We also had our first appointment with the neurologist at this time (kinda strange, usually you would see the neuro at the beginning). The damage to his brain is in the area of the basal ganglia. It is mild to moderate. What will he do? No one has that answer. The brain is very complex, and no two people's will respond the same. She has seen kids with more damage come right out of it and kids with less damage have far more severe problems. So we wait and we work. October 2002 Guess we should have updated earlier!! It has been 3 years since our initial diagnosis. Our world is very different from what we imagined, I guess this is what Holland is like! Robbie has been involved with many different therapy programs. He has completed 200 Hyperbaric dives, swam with the dolphins, attended Conductive Education, hippotherapy, speech therapy, Medek, and attends preschool 3 times a week. It is tough to keep up with him. He is a pretty mobile guy getting around by crawling, and knee walking. He can climb the steps. He is pulling to a stand, and this summer has brought an amazing change in his speech. We hear the first syllable of the words he is trying to say!! He also has a dynavox, which is like a talking computer, that enables him to communicate many of the words he is not ready for. This has been an amazing device and has enabled him to express to us all that he is thinking!! We continue to push him, as well as giving him the time just to be a kid. He is a very determined guy, and only the sky is his limit>
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