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June 15, 2003
6.15.04 update
Where to begin...........I guess the beginning. When was that?!
For several weeks Sean has been very tired and taking naps every day. Sean NEVER takes naps. Never have. SO we know something was up. We just wanted and nothing showed up. Well, not until Early Saturday morning, about 1:30.
He woke up screaming about a headache and his whole body hurting. He was hot and about 101. I gave him motrin since I was out of Tylenol. It took forever to work. Once he went back to sleep and is fever down, I laid awake all night as what to do. We are leaving on Wed(tomorrow) for our mini vacation and I just didn't want any surprises.
Off to the ER. By myself with 3 little boys. I had them check out Dan and Peter since they had colds. They were fine. Sean was acting okay, but still said he hurt. X-rays came back fine. We were sent home with a note to contact our Ped.
I emailed him Sat and he said he wanted to see him Monday morning. I just about canceled it since he was fine Sunday, until 12:01. He woke up screaming in pain and just not consoled with anything. The motrin took forever to work and by 5AM he was not screaming and now sleeping. We were up early and on our way to the appt.
Sean has the beginning of pneumonia. Lower left side had decreased breath sounds with crackles and pops. Not related to his brothers' colds, but to aspiration. Not cool. Since we are trying to keep him health for surgery next month and we were leaving, Zithromax is the choice since his insurance will cover it. He has had two doses and the difference is incredible! He has complained of hurting once today and the motrin worked right away. He has started back to breathing treatments every 6hrs and they help somewhat. We go back on Monday for a followup.
Today we spent 3hrs waiting to see Sean's hand Surgeon. There were tons of things for the kids to do, so it wasn't too bad.
The hand surgeon is thrilled with what Sean can do despite having missing and flat muscles as well as deformities in the hands. She doesn't want to change anything and has released us from her care unless something comes up in the future. Her OT came in and worked with him and said he has learned to compensate his body to handle the missing things. She felt the school district was over doing OT and felt he didn't need it anymore, but found he needs Sensory intergration desperately! They are doing some of that and Sean's new OT has worked with the OT we saw today. Jamie was going to Gina and talk to her about Sean and OT.
The hand surgeon was so thrilled at Sean and his progress in all areas. SHe said for VACTERL, he is the healthiest one as well as the brightest one she has ever seen. Most have hydrocephalus. She kept telling to keep up the great job and good luck with the surgery next month. Yeah Sean!!!!!!!
I know this is short, but I need to go and starting gathering everything for tomorrow. My boys are finally asleep and get things out without HELP! :)
Have a super week!
Shelly
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