We hope that each of you are doing good. We are resting as much as we can, trying to feel better. Hannah's infusion is tomorrow, it takes several hours, and she has to be still for the duration of the treatment, thankfully she can get it at home, a home healthcare nurse, Kim, comes to the house every four weeks, and is great with Hannah. Then after the infusion, she usually rest most of the day, and then the day after she usually likes to play, if she is feeling better. We have to keep an eye on fever after transfusions, and so we keep tylenol and motrin on board. Hopefully with the antibiotics she will do good this week. We will have one more treatment in Feb. and go back to the immunologist, to decide if they are helping enough to continue them. We are praying for Hannah to feel better, 5 years is a long time to be sick. Her issues are :
*allergies, she is allergic to a lot, they set off her asthma,
*asthma, she has breathing treatments several times a day, usually two or three, depending on how she feels.
* pulmonary valve stenosis, vaule in her heart, leading to her lungs, is weak
* heart murmur, on the right side, near the weak valve,
* sleep disorder, she has to much brain activity at night to get good rest, making her tired often,
* migranes, several a month at this point, (like mommy)
* immune disorder - at the moment they think it is - hypogammagobulemia
which is a CVID - common varitable immune disorder...
They did recent test on here T- cells and natural killer (NK) cells. Hopefully this will shed more light on what is next for Hannah in ways of treatment options.
We covet your prayers, and know that Jesus hears them, thank you for all the prayers this far. What a blessingto us to know we have so many prayer partners. We thank God daily for each of you.
Hope that you all have a blessed week.
Much love and prayer's,
Lori and girls