October was a super busy month...with surgery rechecks, orthotics and Chloe's first Halloween...the past year she was very ill so there was no celebration going on at the time. I did forget one rather large event in the month of October...Chloe won the H1N1 lottery and won quite a case of the flu...
I can not say how thankful I am that she had the g-tube and the nissen had been performed...this made the distribution of the proper medication to her so much easier! She started running a high fever, we knew our daughter Claire had been exposed and had what we then thought to be cold symptoms, so out of cautious parenting for a child that tends to take the smallest illness and make them life threatening off to the pediatrician we went. Dr Chao did think it warranted putting her on Tamiflu, the anti-viral they use to treat H1N1, as a precaution as we awaited the test results. Not even 24 hours after giving her the first dose you would have never known she had been ill. Her fever broke, she was up and crawling around and back to her normal sassy self. Sure enough, three days later, the pediatrician calls and informs us the test came back positive. So glad we took her in and so glad our pediatrician isn't afraid to use a good dose of common sense when called for and not always wait for those test results.
Now back to November....finally an illness free month, therapy went smoothly, and Thanksgiving went off without a hitch! Its actually quite nice not to have to report a crisis...so having said that we will move on to December!
December:
Once again an "illness" free month. Chloe did experience some issues with her needing to have the medication she takes for her seizures adjusted. She woke up from a nap one day and while sitting up she went as stiff as a board and started jerking all over. When I picked her up she remained rigid and continued to jerk violently. She rarely does suffer from seizures, but I have to say they never get easier to witness! After speaking to her neurologist and doing a follow-up EEG it was determined that her weight gain was responsible for the seizure. She had not had an adjustment on her Keppra in months and had gained almost five pounds. The EEG recorded no new seizure activity so we all felt comfortable with the increase of the medication. There have been no more seizures since then. We feel very blessed that her seizures are, at least for now, very manageable.
December also brought the dreaded sleep study. We had been waiting for this forever it seemed. The Nissen was performed in September, but it took until December to finally get the sleep study scheduled. For any of you that have had sleep studies done on your children you can sympathize when I say....NEVER EVER EVER again PLEASE! It took almost four hours to get her hooked up and get her to leave the electrodes and monitors alone. The nasal monitors were the worst and of course the most important. Eventually, she wore down and we were able to get everything in its place. Sure enough, the study showed she stopped breathing at least six times an hour. It was determined that she would be referred to an ENT for consultation to have her tonsils and adenoids removed.
Christmas came and went as we waited for a call back from an ENT's office about getting her in for a consultation. We decided that we would seek the advice of a different ENT then we had originally been seeing for Chloe. Its not that he was a bad doctor, unfortunately I did not find him proactive and too narrow-minded in his practice to be a good fit for our family. At first glance, all the nurses were convinced we couldn't get in any sooner than January 25th for the consultation...that was not good for me. After what seemed like a hundred calls I finally found someone trustworthy to see her sooner.
Overall a very good month for our family....I can completely handle more and more like it!
