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!

Miles to go before I sleep...

"The woods are lovely, dark and deep, But I have promises to keep,   

 And miles to go before I sleep,..." “Stopping by Woods on 

a Snowy Evening" by Robert Frost

       As I look forward to following week, the words from this poem echo 

through my mind. To say that next week will be rough is an understatement.

Just the thought of it makes me want to crawl in bed and cry. Part of it is

that before every specialist appointment there is a hope ~ a hope that

this will be the appointment that will reveal an answer, a diagnosis ~ but 

more often than not it just leads to more questions.

    Since December, well even before, Hannah has been suffering, struggling

with 'Anemia of Chronic Illness'. But she also has been dealing with an issue

of getting breathless and dizzy with exertion ~which made dance and its

recital very difficult as well. Right after she left for her missions trip it was

decided a trip to Cardiology was in order. So first thing on next weeks 

agenda is her Cardiology appointment.

  Because Hannah anemia has gotten so bad on Tuesday we have an iron

infusion scheduled at Hershey Children's Hospital. Now normally a 45 

minute to an hour drive is not THAT bothersome but, the 

appointment/infusion itself will be 4 to 5 hours long and because this 

is an unknown it is causing a bit of uneasiness. Plus it makes for a long day.

  Wednesday, Lucas will have his regularly scheduled Orencia infusion. Just 

his normal every four-week thing. Although it is a regular "normal" thing it

is never easy.

  Thursday, well it's my day. A sweet soul said to me earlier make sure you

do something for you in these two weeks (we have 2 weeks from the end of 

ESY till the start of school) ~ I do not think this is what she had in mind.😏

But I have an appointment with Immunology for me. The past couple of

times I have had labs drawn my IgM's have been pretty much nonexistent.

This could be the reason I was sick so often last year and why although

Enbrel help my joint issues I just couldn't stay well enough to take it 

regularly. This is another one of those things that could potentially give 

answers or just more questions.

  Finally, Friday brings a change in infusion medicine for Hannah. She is

switching to Actemra. A long time ago Cody had these infusions but was

able to switch to sub q injections at 19 and he has done quite well with

them the past couple years so we are hopeful this will be a good 

switch for Hannah. However, this also means hospital infusions since

Actemra is not approved for home infusions. Also, the first couple must

be done @ Hershey before switching to our local hospital. So Friday back 

we go to Hershey for that.

  If you pray for us, prayers for peace and just overall endurance would be

greatly appreciated. In the midst of all this, we are trying to get ready for

our upcoming new school year with a high-school freshman and 

a junior/senior. 

 And the next week you ask? Well, I do better if I just take one week at 

a time. 😉 

  FYI August is International Autoinflammatory Awareness month. Please

hop over to The Autoinflammatory Alliance (autoinflammatory.org) and 

learn more about these rare diseases.