Reed has had a great weekend. He had a daddy date on Saturday and the report is that daddy was ready for bed time to roll around, Reed exhausted him!! Sunday started with church; this was the first time we were in church since Reed's diagnosis, and it was a hard one. Thank God for dad's to lean on for support when you are having a hard moment. Cousin Ari came over to play later in the afternoon and lots of fun was had riding on the golf cart and playing trains. We are all very anxious for this week to pass us but also very scared. In a week we will be headed up to Mayo for our second opinion appointment and a week from Thursday we will be headed back to Iowa City for our follow-up. I have know for several days now that some of Reed's lab work is in but have been to scared of the results to make the call. I am telling myself that I have to do this by Wednesday. I am struggling a lot with acceptance and the truth our day to day life has not changed much since the diagnosis but a few bumps and emotional struggles so when I think to far down the road I find myself not wanting to think or talk about it. Since the diagnosis I also find myself praying hard over Reed at bed time with the thinking in my head that when we wake up everything will be fine, Reed can walk again and an MRI of his brain comes back as normal.
Some specific prayer requests for the up coming two weeks would be for our up coming appts, Mayo and Iowa City, we are praying hard for the type of Leukodystrophy to be the cord blood/bone marrow type and the results of his lab work will hopefully tell us this, we do have a couple physical therapy appts this week so prayers those go good as well, and of course continue prayer for our miracle!
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| Bed Time Stories |
There has been a Go Fund Me site started, in our minds we want to get Reed's story out there from what we can find there isn't a lot of research being done about Leukodystrophy because the disease is pretty rare. Jesse and my feeling is that we want to do as much as we can to help this change. We have contacted a couple research companies volunteering any help we can provide, I have also contact a doctor in NY about a study he has been working on. We feel that things like this blog, my Facebook page or the Go Fund Me site will help us spread Reed's story, we don't look at these things as financial help but avenues to share what we are going through and hopefully create more awareness about the disease. So with that being said please understand we don't expect donations but if you are willing to check out these sites and share them that will help us tell Reed's Story.
Here are the most recent #stayingafloat2015 verse:
Here are the most recent #stayingafloat2015 verse:
And finally I will leave you with the cutest video you will ever see, you won't be able to not smile at it:
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