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James in Walt Disney World Spring 2009
Welcome to our Child's Web Page. It has been provided to keep people updated about our James Patrick, a preemie baby that has had his share of challenges since leaving the NICU. James Patrick has Spastic Diplegia Cerebral Palsy, he also has a Bard Button feeding tube and Bronchopulmonary Dysplasia lung disease. He is the happiest kid ever with the longest eyelashes in the world! Please sign the guestbook so we know you were here :-)
Journal
Tuesday, October 20, 2009 3:29 PM CDT Hello everyone,
We hope you are all enjoying fall so far. I wish I was updating with more positive news, but it's not all bad. Unfortunately James has contracted the H1N1 Swine Flu virus. This past weekend I went on a road trip with my parents to Black Mountain, North Carolina to visit my brother and his family. The fall colors were beautiful and we all had such a good time. James stayed behind in Maryland to spend some guy time with Dad. Playing with my sweet little niece was the highlight of my trip, and while showering one morning a little red head popped up behind the shower curtain exclaiming "Hi Auntie MOE!!" she is the cutest thing ever :-) After a great day of checking out the Blue Ridge Parkway, Fred called me on Sunday night to tell me that James wasn't feeling well. I checked his symptoms against the swine flu symptom chart online and went to bed thinking that he had a cold and not the flu. Early Monday morning as we were preparing to leave NC Fred called to tell me that James had been up all night with high fevers and he was taking him to the doctor. Fred, James and I all had appointments at our local state health clinic on Tuesday to all get our swine flu shots because we are all considered high risk, but especially James, we were thinking that if we got through the weekend with no one getting sick we would be home free, no such luck! My parents and I packed up the car and headed to get some breakfast when Fred called me and told me that James indeed had the Swine Flu. So I burst into tears and almost passed out in a crowded restaurant not my finest moment. Then we got in the car and I cried, had panic attacks and called my husband every five minutes the whole way home. Ever since the Swine Flu virus hit I have been terrified that James would get it, James as many of you know has severe asthma and also has another lung disease called broncho pulmonary dyplasia (see link at the bottom of this page) these two conditions combined with his Cerebral Palsy form the "Trifecta of Horrible Complications Risk" for people who get the Swine Flu. Thankfully James has a wonderfully overprotective Daddy who took him to the doctor right away and we were able to start him on the Tamiflu medicine within about 10 hours of his symptoms starting. I arrived home Monday night to see James laying on the couch wearing the Luigi hat that will be his Halloween costume :-) Fred went to bed since he was exhausted and I took the night shift with James. His fevers got up over 102 and he got delirious and began hallucinating a little before midnight. The poor kid was lying in bed with his eyes wide with terror pointing at something I couldn't see then he told me he didn't like it as tears fell slowly down his flushed cheeks, that broke my heart. When I finally got him to come out of it he kept saying, "I'm sorry Mommy, I'm just confused" :-( I got some more Motrin in him and he actually slept better than I thought he would waking briefly to check out the loot that the tooth fairy brought him. When his tooth came out yesterday he told me that he thought the tooth fairy might bring him extra treats since he had "the Porkers", and the TF came through for him! So far the one surprise with this illness is that the coughing is not as bad as we expected. The high fevers have been more of an issue. I am of course going completely overboard with my sanitizing! I'm armed with lysol wipes, sanitizing spray, hand sanitizer, and my special UV light sanitizing wand (it's kinda like a light saber for germaphobic grown ups). Don't judge me for my neurosis, actually scratch that, go ahead and judge me, I really don't care! We are hoping that Fred and I are spared the Swine Flu, we were able to get our shots as scheduled today, and man they hurt! James of course couldn't get the shot, but they recommended that he still try to get it when he is feeling better.
So the bad news is that he has "The Porkers" (that's what he is calling it) the good news is that he has not had to be hospitalized and so far he is holding his own. We do need to watch that he does not develop pneumonia, which is a common complication for kids with asthma and CP. So for now the game plan is continuing with the Tamiflu and lots of fluids. I will update more this week. Thank you all so much for your prayers and well wishes, this has been our worst nightmare for a long time, but with so many prayers coming our way the burden is a little lighter. James loves to read the messages left in his guest book too. If while you are sending up prayers for James, we would really appreciate some prayers for our good friend Tony and his family, Tony is nearing the end of his courageous battle with cancer and could use lots of prayers too, thanks.
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