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Showing posts from April, 2020

We’re back!!

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Sorry for the long hiatus on posting. With all this extra time on our hands we seem to have no extra time on our hands. My kids sure know how to keep me occupied. Like I mentioned before, we are old pros at the quarantine bit but the attached at the hip 24/7 routine is certainly consuming my every second.. I can’t complain about that because I know it’s a blessing buuuttttt, it leaves almost no time for me to get anything for myself done. So here I am posting an update on George a few weeks late. Thanks for hanging in there with me. I’ll be better I promise. The day hospital treatment the week before last went good. No problems and no sickness after. His labs last week were about the same as the weeks before but his hemoglobin had dropped a little bit more. The drs did not seem concerned so I will follow their lead and trust that everything is ok. Update on his face. You guys!!!!! It’s amazing to say the least. His face is not red at all. It is not crusty. It is not dry. There are no s

Side effects

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Last weeks labs showed that George’s counts had dropped some. Not a ton but they dropped none the less. Today’s labs showed another drop. His hemoglobin is still at 10.3 which is good but it had risen to 11.2 a few weeks ago so it is a slight drop for sure. His platelets, although still descent, dropped to the mid 200’s. His ANC dropped too so he is back on Neupegen once a week to try and get his levels to stay high through the pandemic. For the past few months I’m sure you have noticed a change in George’s appearance. His face is always bright red and his freckles have really turned more into age spots. His skin is extremely dry and sensitive. He has had blisters come up on his face, arms and feet. Even though we slather him in sunscreen, he still gets really effected by the sun. He also has trouble with his eyes when it is bright outside. Well I knew that this was all side effects from his medicine but it was indeed confirmed today. He was immediately pulled off of that one medicine

Reflecting

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I took George into Nemours on Tuesday and his labs came back great. His hemoglobin was up to 11.2. That is amazing. Simply amazing. What a huge praise!! Other than after he had a blood transfusion, his hemoglobin has never been that high on its own. His dr was so pleased. I still can not believe it. The treatments to stop the anemia worked. I think that everyone was beginning to think that George was some sort of medical mystery. But God showed them. He showed up big and sure enough healed our boy. I just pray that every day George gets stronger and healthier. Especially with all that is going on with the CoViD 19 virus. My prayers of complete protection over George and our family is something I pray all day about. I am so very thankful that he is getting stronger right now while this virus looms over us all. I think back to last year at this exact time. I was getting everything ready for George’s 2nd birthday party. I wanted to have a really special party for him since honestly, and I