medical update

30 Dec

for the last 2 blood transfusions we have decided with the girls doctors to wait 3 weeks.

yesterday they went in for a draw and they were once again

amazingly similar.

(today they were transfused)

would you believe this is lainee during transfusion? playing the "weeb" as she calls it

(see her little blood line?  it’s great they can walk around, wii, movie, color, crafts, a blessing!)

back to their numbers being so similar

I don’t want to get over that

zinnia doing crafts during her transfusion. what a blessing our hospital is!

it’s really amazing and I’m thankful for it.

Often the nurse that calls to report their numbers tells me that she checks and rechecks because it is truly amazing.

God has been very gracious to us in this.

Their  numbers were identical last time.

yesterday they were 8.8 and 8.9 after 3 weeks.

I would like for them to be closer to 10 for optimal growth and development.

but,

i think we are all feeling like 3 weeks is a lot more convenient then every other week.

SO, we were happy with the results.

However, the girls ferritan levels are astronomical.

have gone up over time, in fact

Iron overload.

I was in a bit of a panic today when the numbers were reported.

I feel like we are their advocates,

knowing more then the local hospital here in town knows.

in a frenzy

I called Chicago Memorial and they are so wonderful.

talked me through a plan.

watching and wondering with us when the iron overload will decrease,

wondering what damage has been done.

they will increase chelation by 250mg to 750 every morning.

they also need to come in for MRIs of organs which I have not yet done,

and should have months ago.

I WILL schedule that on Tuesday.

I love to forget that there is something wrong with them.

but I can’t!

I think we will decide to wait another 3 weeks before another transfusion and see how it goes.

I know the MRIs will reveal damage, it must.  There must be damage, all those years with no chelation.

We could pray for healing and a drop in their iron levels through out their little bodies.

for no damage

That is the real danger with thalassemia, the organ failure.

After we see what the MRIs reveal we can try a daily shot of chelation, at home each night if needed.

but we need to be patient and wait and see, it could take time for it to drop.

and they hate the medicine.

it’s so stressful in the morning to get them to take it, especially before school!

All have risks, all chelators I mean.

Today was the first time I felt scared for them.

I’m anxious to talk to the lady at Chicago Memorial on Tuesday who can help me schedule needed visits and tests.

Chris took the day off and was at the hospital with them.

I taught mimi how to play chess today while her sisters were gone

we needed that.

Please pray for my girls to be healed, heart mostly, a spiritual healing from Jesus, and bodily secondly.

thank you.

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3 Responses to “medical update”

  1. jean Mulvahill December 31, 2011 at 9:27 pm #

    Saying prayers for your sweet dear girls! AND for their Momma!

    Abby’s levels are crazy high- will email later. She is having a scan of her heart and liver this month. I don’t know enough about it. I don’t know what to think…

    Sometimes ignorance is bliss and we are blissfully happy… more info will come in time…

    God Bless these sweet dear children…

    Happy New Year!

  2. Lisa January 3, 2012 at 7:42 pm #

    Praying for your little girls.

    I sent you an email a few days ago. I just wanted to make sure it didn’t go to your junk mail.

    Lisa

  3. KT January 4, 2012 at 3:24 am #

    It’s all so scary, isn’t it? Our first appointment with the surgeon is in one week. I’m hoping he’ll take one look at her and refer us to a Center of Excellence for her special need and that I won’t have to fight for it.

    I, too, am glad that Christmas is over, though we did enjoy it as much as possible under the circumstances. It did get a bit overwhelming for my daughter, too, as she tried to figure it all out. I think it would have been better to have had less festivities and decorations and more time just hanging around with each other. But, like your girls, there are memories now, and something to look forward to next year.

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