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May 30, 2016 - Jeff sent this picture saying- Well looks like we're going home! T's inflammation markers are all down in normal range. (0.9 compared to 11.3 a few days ago) So the doctor feel good about letting us head back to St. G. Hopefully we can keep it down this time!
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| Love waking to this happy bright blue eyed baby! T-man is doing great and was able to come home from PCMC yesterday. They are still not 100% sure what was going on in the lungs but they did a slight adjustment on one of his antibiotics and all the many prayers in T's behalf did wonders. His inflammation maker went from 11.1 (normal is <.8 ) last Tuesday to .9 yesterday. He is still a little low on RBC but we are giving him an iron supplement to hopefully help with that. For now the plan is to keep him healthy and continue to push forward with the BMT (bone marrow transplant) #prayers #blessings #Tmantough #toughliketanner #jolleyfamily2016 |
Tanner has been home for over a week now. Its been great to have him home, but also nerve racking because I am always trying to keep things clean and make sure he stays healthy as possible. We have still been able to have fun together and enjoy the summer heat of ST. G.
T had been put on two forms of strong antibiotics. One is to fight fungal infections and the other is bacterial. Once we feel we have tanner in a stable part of his sickness they will change the dosage of the antibiotics to more of a preventive dose rather then a fighting dose. We have not received a pathology report yet on the procedures T had on our last visit to PCMC. We hope to get them soon so we can get some answers of what made him sick.
Another blessing is being approved for immune boost shots. (These shots are similar to insulin shots) this medication is extremely expensive but thanks to a number of things, our insurance has approved the shots. Jeff and I are the lucky loving parents who give him these shots 3x a week. He does not like it one bit but who would. Because of drug and the company who makes it, we had a nurse come to teach us how to give the shots along with teach us more about CGD. She help us relax a tad and gave us hope for this medication for T. She said that she has had many patients who have CGD and have done the 3 preventive medications (the shot and 2 antibiotics) and are living life fairly normal and doing well. This gave us hope for T man. We are still planning on BMT tho.
Our baby boy has turned 6 months old. Where has the time gone. Its crazy how much our lives have change in such a short amount of time. Tanner is still tanner. He is rolling all over the place, loves to laugh,and can get in moods where he is very talkative. He enjoys watching his sister play around him and sometimes with him. In a general he is developing well.... although he has not gained any weight in the last two months. He still weights right around 15 pounds. This has Dr. M and or team Doctors at PCMC concerned. So they have giving us the OK to start solid foods. They hope with solids, breastfeeding and supplementing with formula that we can get him to gain weight.
