It has been a while since my last post, and that is due to me feeling like our life is consumed with doctors appointments these days.
I mentioned that our first visit to the pediatritian resulted in referrals to four other doctors. Her visits to the occupational therapist and speech therapist resulted in more visits for each of them. A subsequent visit to the occupational therapist resulted in a referral for yet another doctor, this time a physical therapist (to build up strength so she can do the occupational therapy kind of things).
By the end of today, we have seen all of the different doctors at least once except for her newest referral of her physical therapist.
Occupational therapy will be once a week, for at least the next three months.
Speech therapy- I am meeting with the therapist three more times, mostly for training for me on how to reinforce learning to talk at home, with a reevaluation at some point to determine if she needs more therapy at that point.
Her pediatric infection disease doctor, who is in charge of her hepatitis treatment, said that she looks good for now, but that the biggest thing with Hep B is just to watch it, so we will be seeing her every 6 months for a while, but then it will decrease to every 9 months unless something comes up. Long term, we are watching for liver damage, and if/when that happens she will start a medicine for that. Until then, it is just a virus we keep our eyes on, and make sure we are careful with her blood.
Her pediatric hematologist, who is in charge of her sickle cell disease treatment, says we will be seeing her every three months, and put her on antibiotics that she will have to take until she is 5. Those only last for two weeks at a time, so every two weeks, we need a refill. She actually had good news for us. She is definitely sickle cell disease, but her blood has an advantage that you rarely see. I think it is fetal hemoglobin, and normally, kids only have these in the womb and just after birth, but her levels are currently way higher than normal (normal is less than one percent, she has 33 percent) and apparently it will really help her body manage a lot of the negative side effects of sickle cell disease as long as these fetal hemoglobin levels stay high.
Other than that, her sickle cell is again mainly a monitoring thing. Those three month check ups make sure all of her levels are good. She is going to get regular scans of her head (some special machine that helps determine risk of stroke so that preventative measures can be taken before she has one) and then if she ever has a fever over 101, we will be contacting the doctor so she can have her blood levels checked and get an extra dose of antibiotics. Sad news is that at some point, it is inevitable that her spleen will no longer function, and that is why we have to be so careful with fevers, and why she is on antibiotics.
But, all in all, it amounts to a lot of doctors. However, when we accepted her, we knew she had these health issues, and we decided that it was something we could handle. Also, even before we knew about her specificially, we had decided that medical needs that just needed attention but did not interfere with her mentally were something we were willing to handle. Now we are living that life. Her therapies are to get her caught up with a typical child her age, and then her other doctors are there to keep watch over her issues, but on a daily basis, neither of them should really affect her life.
So that is the update on her health, that I chose to make public, so that as we go through our journey of raising Grace, others could possibly learn from our experiences.
Oh, and our cocooning time ends this week, so those of you who live close and want to spend time with Grace and I, let me know, and I will try to find time between her many appointments for us to hang out.
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