I started this post this last weekend and have been jotting things down I want to write about as I think of them, knowing that I wouldn't probably post anything until after our visit in Iowa City. I guess before I get started on yesterdays visit let me recap our visit to Mayo and this last weekend.
After we got home from Iowa City a month ago we saw Reed decline rather quickly in his ability to stand and walk. However over the last few weeks we have gradually seen him have the determination to gain some of this back, all thanks to the power of your prayer I believe. If we are honest with ourselves we don't believe that he will gain the ability to walk back again but he has slowly started to stand a lot more with the help of objects and hands to hold. He will walk with help and over the weekend we witnessed him take four small steps on his own. Then last night he stood up on his own in the middle of the room with no help and even got in a dance move or two. God is amazing and can do amazing things who know maybe he will be able to walk again.
Isn't prayer such an amazing thing, on Monday I had such a calm and peace going into the visit at Mayo. The drive there was good, Reed was happy and actually really goofy. Mayo is a beautiful place, we got right into our appt and were seen right away, in total we were probably only at the hospital maybe an hour and a half. The appt was very little stress on Reed (thank you for your prayers there) and he really like the doctor we saw.
Not a lot of new information was learned from our appt though which was a little disappointing to me. She examined Reed, took a family history, reviewed his MRI and the labs that Iowa City had send up. And then talked over everything with us. She asked several times if Iowa City had ordered a complex DNA test which honestly I didn't have the answer to but she felt like that was the best method to go next to make sure we pin-point the exact gene that is mutated, this will help with determining the exact type of Leukodystrophy that Reed has. She didn't want to order the test there at Mayo though because just in case Iowa City had they don't want to double up on test for insurance purposes. If Iowa City hadn't already ordered it she put in our notes to take to Iowa City for them to do it.
She also talked about once we know more specifically the type he has then we can start looking into clinical trials/research that might be available to him. She gave us a website to be checking into these called clinicaltrials.gov. When we were in Iowa City a month ago I got the feel that there was very little hope for treatment with Leukodystrophy and that we were kind of screwed, but after the Mayo visit she made us feel like there are some options out there and it gave us a little bit of hope. Finally we asked her about the bone marrow and she said of the lab work that she had but she didn't think she had it all he was negative for those type and the bone marrow would not be an option, big blow.
And that was that the appt was done and we headed out the door, I left confused I felt like I needed an action plan, a this is what we do next conversation but that didn't happen. Thank God for Jesse because he cleared things up for me and said that we won't get marching orders until after our Iowa City appt.
After we got home from Iowa City a month ago we saw Reed decline rather quickly in his ability to stand and walk. However over the last few weeks we have gradually seen him have the determination to gain some of this back, all thanks to the power of your prayer I believe. If we are honest with ourselves we don't believe that he will gain the ability to walk back again but he has slowly started to stand a lot more with the help of objects and hands to hold. He will walk with help and over the weekend we witnessed him take four small steps on his own. Then last night he stood up on his own in the middle of the room with no help and even got in a dance move or two. God is amazing and can do amazing things who know maybe he will be able to walk again.
Isn't prayer such an amazing thing, on Monday I had such a calm and peace going into the visit at Mayo. The drive there was good, Reed was happy and actually really goofy. Mayo is a beautiful place, we got right into our appt and were seen right away, in total we were probably only at the hospital maybe an hour and a half. The appt was very little stress on Reed (thank you for your prayers there) and he really like the doctor we saw.
Not a lot of new information was learned from our appt though which was a little disappointing to me. She examined Reed, took a family history, reviewed his MRI and the labs that Iowa City had send up. And then talked over everything with us. She asked several times if Iowa City had ordered a complex DNA test which honestly I didn't have the answer to but she felt like that was the best method to go next to make sure we pin-point the exact gene that is mutated, this will help with determining the exact type of Leukodystrophy that Reed has. She didn't want to order the test there at Mayo though because just in case Iowa City had they don't want to double up on test for insurance purposes. If Iowa City hadn't already ordered it she put in our notes to take to Iowa City for them to do it.
She also talked about once we know more specifically the type he has then we can start looking into clinical trials/research that might be available to him. She gave us a website to be checking into these called clinicaltrials.gov. When we were in Iowa City a month ago I got the feel that there was very little hope for treatment with Leukodystrophy and that we were kind of screwed, but after the Mayo visit she made us feel like there are some options out there and it gave us a little bit of hope. Finally we asked her about the bone marrow and she said of the lab work that she had but she didn't think she had it all he was negative for those type and the bone marrow would not be an option, big blow.
And that was that the appt was done and we headed out the door, I left confused I felt like I needed an action plan, a this is what we do next conversation but that didn't happen. Thank God for Jesse because he cleared things up for me and said that we won't get marching orders until after our Iowa City appt.
In case you are wondering what Reed's MRI looks like here is a picture of a normal brain and a brain that has Leukodystrophy. This is not Reed's brain but it is similar.
As you can see the one on the left is a normal brain all the white matter is there and the brain on the right there are those dark grey spots, that is the melting of the white matter.
On the way home from Mayo I was feeling very let down and disappointed, I texted my mom and sisters; "no miracle today for our boy, I had such a calm about today's appt, my hopes were up now I feel let down. I trust God and his plan but still sad and confused" and my mom who said the right words back to me, "yes i know--me to, but we have to remember He may be asking us to wait a little longer while He works on more of the details to Reed's plan."
If you had the chance to read my mom's post about Proverbs 3:5-6 the other day you should jump on over to her blog and read her latest post called, Adversity Reed 1. It is very encourage and mom is so good with words, you will feel encouraged I promise.
Therapy this weekend went really good I was able to sneak out of the room which allowed Reed to focus and the report back was that he worked very hard and had a great therapy session. I was very excited about this because the previous session's we have had didn't go so good because Reed would want me versus doing the exercises with the therapist.
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| Working hard in thearpy |
The community we live in continues to amaze us everyday, we were truly surprised by the blankets being made by Nancy Steinbron and Becky Bohling they are just amazing! The first round of #teamreed shirts came in and they turned out so good. Reed's shirt is so cute his says #IAMREED and on the back it says #IAMSTRONG, bless Nicole she gave him a bear with a matching shirt on it as well and Reed loves it. She is still taking orders for shirts if you would like one.
This morning brought struggles to get up; this morning we were scared, we prayed together, I laid awake and I struggled to get out of bed. I felt that when I got out of bed for the day I would have to face today and get the day started and I was scared to get today started.
Today's appointment brought good and bad, all of Reed's lab work that they took from our previous visit was negative which meant that of this rare disease that Reed has his form of it is even rarer. So we are still unsure of the type of Leukodystrophy that Reed has. In order to hopefully determine the type that Reed has they drew more blood to do a more in depth sequence of Reed's DNA. Based off of what they know already they think the type that Reed has is a type called Vanishing White Matter, not sure if that is the technical term.
The doctors have also be consulting with the leading specialist in the Vanishing White Matter type who is in Washington DC. She has been reviewing Reed's case and wanted us to enter him into her database which will help us qualify him for clinical studies and research. She also may like to see Reed at some point and we are considering a trip out there, to get her opinion.
So the waiting game continues the DNA test that they drew for today will take roughly two weeks. We will go back in one month to review these results at this time we will know if he has Vanishing White Matter Leukodystrophy or if more testing will need to be done. The good new is that Reed seems to not be getting worse like I said is actually gaining back a few things that he has lost hopefully. It was encouraging also that the doctors didn't think at this point that his disease would be fast progressing.
Aunt Becca made the trip down with us which was very helpful because she was able to distract Reed for us while we needed to talk and listen to the doctors. I think by the end of the day they wore each other out.
Today's appointment brought good and bad, all of Reed's lab work that they took from our previous visit was negative which meant that of this rare disease that Reed has his form of it is even rarer. So we are still unsure of the type of Leukodystrophy that Reed has. In order to hopefully determine the type that Reed has they drew more blood to do a more in depth sequence of Reed's DNA. Based off of what they know already they think the type that Reed has is a type called Vanishing White Matter, not sure if that is the technical term.
The doctors have also be consulting with the leading specialist in the Vanishing White Matter type who is in Washington DC. She has been reviewing Reed's case and wanted us to enter him into her database which will help us qualify him for clinical studies and research. She also may like to see Reed at some point and we are considering a trip out there, to get her opinion.
So the waiting game continues the DNA test that they drew for today will take roughly two weeks. We will go back in one month to review these results at this time we will know if he has Vanishing White Matter Leukodystrophy or if more testing will need to be done. The good new is that Reed seems to not be getting worse like I said is actually gaining back a few things that he has lost hopefully. It was encouraging also that the doctors didn't think at this point that his disease would be fast progressing.
Aunt Becca made the trip down with us which was very helpful because she was able to distract Reed for us while we needed to talk and listen to the doctors. I think by the end of the day they wore each other out.
I haven't been doing a very good job with keeping up with the #stayingafloat2015 verses so here are the last 4 that I have wrote down, I am working on catching up because I find these verses so encouraging and just what I am needing to hear about God and his promises:
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