Updates

On Monday, we had Hannah's cardiology appointment, the good news is her heart is showing no damage from the under oxygenated red blood cells. Tuesday at Hershey she had her iron infusion. Per her Hematologist, the hope is the iron infusion will boost her levels and provide her with some relief.

Repeat iron infusions will be determined by labs and if she can maintain her hemoglobin level.  The doctor suspects she will have at least one more. Infusions can be done every 4 to 12 weeks depending on her levels. IF for some reason this does not help the issue then we will have to determine whether or not her bone marrow is functioning and if a blood transfusion is needed. So we, of course, are praying that the iron infusion(s) do the trick.

Our evening was rocky. Hannah had a bit of a reaction to the iron after we returned home. She had a normal reaction of nausea, joint/muscle pain, and headache but, she had a rare reaction of a high fever. So we played phone tag with

Hematology and Rheumatology for a couple hours. When morning dawned she was 

much better.

Wednesday's infusion was but tricky because Lucas is a hard stick. So after 4 attempts we finally got the IV in. The rest of his infusion went with out a hitch!

My appointment Thursday was a bit more complicated. My IgM levels are 

continuing to drop so... they are waiting on some titers to come back and then depending on what they read I will have to be revaccinated and then tested 

again. The possible outcome being IgM deficiency and then treatment would 

be IVIG every so often and possibly prophylactic antibiotics.  The other 

possibility is that I am dealing with Myeloma so I am being sent to Hematology 

to rule that out. Until then we pray and keep soldiering on.

Friday was a long day...LONG .  We left the house at 10 and returned home at 6.  Actemra is a longer infusion because blood work must be done before hand to 

check liver counts to make sure it can be given. Hannah was a trooper and so 

far has responded well.

Many thanks to all those that prayed us through this week! We covet your continued prayers. 

A high point this week is that our chickens started laying! It's just the first week

and from the 3 girls,we have 7 eggs!