July 2005
July 11
Jake survived another week of testing the middle of June, which all went well. The older he gets the easier it is becoming to help get him throuh the mornings when he is NPO (without food or drink). Jacob had bloodwork, his IVIG treatment, MIBG Scan (2 days + injection), and an MRI. We don't yet have any official results, but we are hoping that no news is good news. We did learn however, that Jake might have a genetic blood disorder related to his low Hemoglobin, which only affects his bodies ability to produce a normal amount and size of red blood cells (these are the cells in which carry the oxygen to the body). This is not treatable, and will not affect him to any degree medically...if he decides to have children later in life...he would have to ensure his wife was not a carrier of a similar gene, or his child would be seriously affected.
We have started on the next phase of the ACTH treatment, every other day dosing! We noticed a difference in Jake right away (he became irritable), but his body has since settled into the new dose and he is doing very well. Jake is sleeping better, and has actually slept the entire night on occasion....yes you heard it here...JACOB HAS SLEPT THE NIGHT!! My sleep habits,I fear, have been damaged beyond repair!!! (I may never sleep the night again!!). We are still battling Jacob's blood pressure, and his dose of medication (both the Lasix and his blood pressure meds) have been increased again. So far, Jacob has been handling the ACTH fairly well....we hope this trend continues!
I can't thank everyone who has shown us support both financially and emotionally since Jacob's diagnosis a year and a half ago....we continue to check the website daily for guestbook entries and love to hear from everyone....sorry I don't always find the time for an update as often as I should! We are happy to hear that people are still checking the website and are interested in how Jake is doing....
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