Good
News:
The
good news is that Ella had to go in for another iron IV infusion on
Friday. Why is this good news? Well, because while we were there we learned
that in the 2 weeks she’s had her g-tube she’s gained 2.4 pounds! When she was weighed right before her surgery
on April 26th she weighed 12 kilograms, or 26.4 pounds (see, I told
you she was tiny for a 4 year old). On
Friday she weighed 13.1 kilograms, or 28.8 pounds. We are so excited! We knew she was getting bigger, her clothes
were tighter, her arms look chunkier, her face looks chunkier, and even her
legs look chunkier. We’ve even had other
people comment that she looks bigger.
This is terrific news! Hopefully
she’ll be 30 pounds by her birthday!
The
other great news is that Ella’s iron is up to an 8. I realize this means nothing to most of
you. Just know that for the average kid
their iron level is around 12. In Feb
when we went to Cincinnati Ella’s iron was at a 6.5. Yeah, half of what it should be. We’ve been going to a local blood clinic every
2 weeks since then and she’s been getting an IV iron infusion. Basically, instead of giving her iron
supplements, she gets an IV and they put iron directly into her blood
stream. Ella calls this her “Happy Juice”
because she always feels better after she gets an infusion. Even with the iron infusions the highest we
could get her iron level was up to a 7.1, and 2 weeks after that she was back
down to a 6.5. It appeared that her body
was so starved for iron that the minute she got some in her blood stream, her
body immediately sucked it up. Joe and I
were beyond frustrated, so when she was going in for surgery we asked the
doctors to consider giving her a blood transfusion. I can hear all of the gasps across
cyberspace. “Blood Transfusion” sounds
much worse than it actually is. No, it’s
not ideal. Yes, we wish there was
something else we could have done. But
the reality was that we had been trying the iron infusions every 2 weeks for 6
weeks and they just weren’t working. We talked
to several doctors about this option and felt like this was the right next step. The hope is that with good blood in her that
already has a good level of iron, now her body can start from a higher level
and work up, instead of starting from the bottom and working up. Her iron is now at an 8, and she got another
infusion on Friday, so we’re crossing our fingers for good progress. The other added bonus is that with her new
belly button I can now give her iron supplements daily without the fight of her
taking them orally (which she flat refused to do, and when I would force them
in her she would throw up).
2
little side notes: 1) All morning I prayed that Ella’s iron would be at an
8. No joke, that was my specific
prayer. Guess God heard me. 2) As we were leaving the clinic Ella was the
last patient for the day, so they gave her all of the balloons that were in the
office. We came home with 9 Mylar
balloons!
Bad
News:
The
bad news is that Ella’s skin is really bad right now. I’d say that right now approximately 75-80%
of her body is open wound. I honestly
can’t remember a time when it has been this bad. It’s heart breaking. We aren’t sure what the reason. We had a wound cultured while we were at the
blood clinic, so it could be that infection is the cause of this horrible skin
phase. Another possibility is that she’s
growing so much so quickly that her skin can’t keep up. She’s also just getting over a cold, so
somehow the cold could have caused skin breakdown. Whatever the reason, I’m ready for this to be
over. It’s times like these where my
inadequacy comes through. I’m at a
loss. I’ve tried everything I know to do
to heal her body. I went to Whole Foods
and spent $9 on a diaper rash cream that someone recommended. I even went and bought some coconut oil and
have been rubbing it on her body because someone told me it’s good for
skin. Seriously, I have no idea how to
help because everything I’ve tried doesn’t work. Please keep Ella in your prayers. Pray for healing for her sweet body and
please pray for wisdom for Joe and me to know what to do. We are so encouraged by the progress made
with her new belly button and all that it will provide, but right now we need
her sweet body to heal.
Well,
there you have it. Life comes with its
ups and downs. Ella is in good spirits. She continues to help with her new belly
button and has adjusted to that beautifully.
Physically, she just takes things slow and I keep her on continual
Tylenol. She really is Xena.
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