Nov 17, 2009
Well AJ's adjustment didn't really work. AJ says that he is not ready to be fixed though. So we are leaving the ball in his court. We told him to let us know when he believes the headaches are too bad and he is ready to be fixed.
Alexa..where to begin. So her leg pain has led into numbness and tingling in her legs/feet. She complains that her hands feel funny. She has been getting headaches and left eye pain. Her labs that she had done last Thursday showed that she was a little dehydrated and her X-ray of her right leg was neg. Surgeon wants an MRI of her brain, neck and spine ASAP. She got sick again with a cough that she has had for MONTHS and a fever on Sunday. Pediatrician set us up with a Pulmonologist ASAP. We had that appt. today. Alexa was a trooper. She had a pulmonary function test, lab work, H1N1 shot, and X-ray. Then they want her tested next week for Cystic Fibrosis. The Dr. did clear her to be sedated for her MRI whenever we can get her in!!!! We can't get her in for the MRI until Dec. 7th do to the need for anesthesia. As the days go by and her symptoms increase...my hope of a negative MRI decreases.
Nov. 5, 2009
This AM AJ went to clinic and had his shunt readjusted. Turns out that I thought he was set at 60, but in Sept. when he had his new shunt placed, they set him at 80. So we set it to 60 today and we will see what happens. If nothing gets better I guess that means that the shunt is not draining, but hopefully this will work!
Tonight is Alexa's last dose of steroid for her asthma, so next weekend we can get her testing started.
Alexa Nov 3, 2009
I know not much here about Alexa. Chiari 1 with decompression. Feeding disorder with feeding tube and Nissunfunduplication.
She has been complaining increasingly over the last couple months of leg pain. She is also increasing her complaints of headache. Although her and AJ seem to get a lot of sympathy pain for each other and with AJ being bad...we never know what to think! Anyway her leg is getting worse. It is always the right leg that she complains about. It is to the point that it is now an everyday problem. She trys to insist that she needs a cart at any store we go in because her leg hurts. We don't let her have the cart because we didn't want to make her leg an excuse or a big deal. Now she is beginning to explain what sounds more like her leg is falling asleep or becomming numb and tingly.
She had an appt with the pediatrician today because we had to start her on her steroid for her asthma the other day and I brought all this up with her. I told her that we initially thought it was growing pains and asked if they could measure her. Well she quickly told me that that is a myth and that by the way...she did not grow. I told her that when she says that her leg hurt the other day I felt both legs and her muscles seemed even and not crampy. She ordered labs to be done after she is off the steroid and she ordered x-rays on her hip and right leg. I also sent a message on to the surgeon when I updated him on AJ. I let him know what has been going on and what the pediatrician has ordered. We wanted him informed to see if he had any input for us. He said that it sounds like it could possibly be spinal in nature and if everything comes up negative with the pediatrician he would want an MRI of her spine to check for changes.
This is shaping up to be another great year!! It would be nice if I could get a few straight weeks of work in and I know the kids would both love a break from Dr's and hospitals. Please pray, thanks
Oct-Nov 2009
Okay so our camping trip was turned into a day trip in the rain. Still had bad results with AJ needing to be taken to the ER late in the evening for flu symptoms and bad headaches. The ER Dr. did a ct-scan and his scan did not look good, so AJ was again admitted to the hospital. They tapped his shunt to ensure that nothing was still infected and they drew labs. His flu swab was lost so we will not know for sure if he had H1N1 but he did stay in the hospital to be hydrated and observed to see how bad his head symptoms were and what was from the flu. The head pain was mild after he started feeling better so we were able to go home in time for AJ to attend his field trip at school to the Dutch Apple Dinner Theatre! It was great! We both had a good time. THe surgeon was gone last week and wanted an update for when he returned. AJ said "Tell him that I still have headaches at night but it gets better in the day. My head gets puffy over my shunt when I lay down, but it goes away in the morning after I am up awhile. I get some headaches in the daytime, but it depends on what I am doing."
The surgeon decided that he would like to try to adjust AJ's shunt again before he goes back to the OR. Hopefully we will be able to get him into his Thursday morning clinic so we can try it out. So much for Lucky 13 :-(
