happenings...

Its been a while since I wrote; call it lack of thoughts to write about, lack of energy or laziness. Most of you I am assuming follow the Team Reed Facebook page, and I have been posting there a lot more often then I have here so this might all be info you already know.  So with that, what we thought would just be a month long wait to hear back about Reed's most recent lab work has actually turned into a ten week wait.  There was some confusion on the test that were ordered and the doctor initially thought the test would only take 2-3 weeks is actually going to take 8-10 weeks.  We will meet with Dr. Pealman on July 2nd to find the results, at this point we will know if Reed's Leukodystrophy is the Vanishing White Matter type or if it is negative.  If it is negative we will then have to go into full DNA sequencing and will most likely do this through my friend Anna's company out in San Diego.  We do have a risk of it going diagnosed and us never getting a type which in that case we probably won't know the extent of the disease until things happen.  If we can get a diagnosis then we will at least have a general time line on when we might expect things.  

We continue to work with the doctor out in Washington DC and have entered Reed into their database for research and still have the possibility of us going out there for an examination possible in the fall.  Therapy continues to go really well for Reed and we continue to see positive things coming out of therapy.  Reed got his braces yesterday and the first day with them went well, he was being very possessive over them because they were "his new shoes".  For the time being he only has to wear them for an hour or two a day until he starts to get used to them.  The only complaint he had was they were "tight".  The last few weeks he hasn't let me leave his side in therapy which makes for not a very productive therapy session but we still manage to get a few things done.  Please pray that he continues to be comfortable with the therapist and will let mommy go so he gets the most out of his time with them.  

I continue to struggle with Reed's diagnosis, living day to day one thing at a time, I find it hard to have acceptance with what the future might hold.  I find myself from time to time reading about another children with Leukodystrophy and find myself think this can't be Reed's fate. Feeding tube, breathing tube, and waiting can't possible be in our future.  This is not our boy this not how he is suppose to live his life. We have seen so many positives lately so much of God working in his life that thinking much past the current day, hour, minute or second is just so impossible for me.  I asked Jesse last night if he every reads about kids with Leukodystrophy and he said he has but since there are so many variations and variables he also has a hard time seeing to much past the current day.  We pray the same pray that so many other parents I am sure are praying. We ask for that miracle we ask for God's healing hand.  We have to believe we have to believe in what we can't see and know that he is listen and wrapping his arms around us all. I go back to this verse often Matthew 6:23, "So then, do not worry about tomorrow, for tomorrow will worry about itself. Today has enough trouble of its own."

Again thank you will never be enough for all your prayers, we continue to see improvements in Reed's walking he has better weeks then others but still has improvements.  I believe getting outside more has really picked up his spirits and he continues to be that happy, crazy little boy.  

Keep the prayers coming MIRACLES do happen, God is listen and working in ways we will never understand or possible see.  

Here are some pictures of him with his new "shoes" on or braces.

We are also on the eve of the Team Reed 5K and I am very excited about it. If you are around the Jesup area tomorrow morning at 8:30 please stop by and say hi, or run/walk in the event.  We will start and finish at the park pavilion.  

Some other events that are happening, St. A's school is holding a Reading for Reed event all month long with their students.  Where they can get pledges and log their reading minutes.  The Jesup Community School is currently holding a penny drive through out the whole school.  The Jesup Softball Team will be holding Team Reed softball game on June 23, everyone is encouraged to wear blue to the game, the girls will be wearing Team Reed headbands and Reed or myself will be throwing out the first pitch.  

The Golf Tournament and Live/Silent Auction is slowly approaching on June 20th.  If you would like to donate any items to the auction please contact Marci Dahl at 319-310-4943 or mdahl@fsb1879.com.  Both Jesse and I are really looking forward to this event and to see all of our loved ones that day.  

Finally, my dad brought it to my attention that if you are a frequent Amazon user you can sign up through http://smile.amazon.com/ch/35-1557361 and a portion of your purchase will go to The United Leukodystrophy Foundation in honor of Reed.  

Big Miracles

We were told that with this disease somethings might go and come then go again.  Well really since November Reed's walking has really been the only thing that has been affected so far. In January we started to actually see it start to worse a little and then by the time we went to Iowa City at the end of February he was really only able to take 2 to 3 steps without falling. Then by the time we left Iowa City a few days later he was only crawling, I believe stress induced.  Ever since then Reed has only been a crawler, he would walk some with the help of holding two hands but not for very far before he wanted to be picked up.  We have strong prayer warrior working hard on Reed's behalf and about a week ago we started to slowly see some improvements with Reeds walking.  Over a couple of days we would see him just randomly stand with no help, then a few steps were taken, then some more steps.  I posted on facebook that it is the little miracles that make the big miracles seem possible followed by this video:

It's the little miracles that make the big ones seem possible. Just a week ago he wouldn't have even tried to stand like this on his own!!
Posted by Team Reed on Sunday, April 12, 2015

A few days later we watched Reed achieve a big miracle in our eyes, prayers are working; God is listen and He is working in Reed's life.

Please take 30 seconds to watch this video, this is what the POWER of your prayer is doing!! This disease has highs and lows we were told that things may come and go and then come again but this is just amazing. Reed hasn't taken this many steps since January on his own. Your prayers are working God is listening, and He is working in Reed's life!!
Posted by Team Reed on Monday, April 13, 2015

Therapy

Therapy has been going really good, like I wrote a few days ago.  Reed has been really thriving when I can sneak out of the room and he is just with the therapist, both in PT and speech.  We will be getting fitted for some short ankle braces next week and I am really hoping that might give him the confidence to walk a little on his own.  He is so close lately, only holding on to one hand and barley at that.  We also talked about getting sized for a walker and ordering one I think it will be something needs to start getting used to and will hopefully help with getting around outside, and not having to crawl everywhere.  Here are some pictures from this weeks therapy.

Reed Two Year Pictures

Let me tell you about my amazing friend Tessa and the wonderful photographer that she is.  She has taken some many pictures for us, engagement pictures, gender reveal pictures, Reed's newborn pictures, Reed's first year pictures, and now Reed's two year pictures.  She is so loving and caring, she is so patient with Reed and will stop the shoot to play with him to make him more comfortable. Her creativity is amazing and always has new ideas for us.  Here are some of the pictures she took of Reed the other day, we have a few more shots coming up with her and I am so very excited for them. Please check out her site as well Sackett Photography.

Here is what Tessa had to say when she posted these photos, brought tears to my eye:

You see the smiles and think "oh cute"...but what you don't see in this picture is a mother who lays awake at night pleading with God for a miracle for her one and only baby boy... A mother who braves her circumstances with courage and hope....A mother who just wants her little boy to LIVE...pleading for MORE time....MORE LIFE.....more dreams and prayers answered for her little boy...And a mother of FAITH who believes God can do ANYTHING! You may notice Reed's incredibly contagious smile or maybe you notice those sparkling blue eyes that could give anyone a major heart melt. But what you don't see is a little boy who's fighting Leukodystrophy, a rare disease that very few kids in the U.S. are diagnosed with. A disease that comes with a lot of scary unknowns. The "seen & unseen" are funny things. It's easy to see or not see things when we want to. Sometimes in life all you can choose to see is HOPE. Through many trials of history, God has placed in us a HOPE that is so profound that you can't always explain it and definitely not always "see" it, but it's there. It IS there.
To read more about Reed please visit his bloghttp://www.teamreedcrosby.blogspot.com

Please pray and keep praying for sweet Reed and his family. If in your heart you desire to help even in the tiniest way you can go to:http://www.gofundme.com/osm9qk & help support this amazing family.

Staying A Float-the rest of the month

I'm sitting at therapy, Dora is on and I'm the only one in the waiting room. Reed has started to really excel in therapy and does even better when I can sneak out of the room, he focuses better then. Today was our first day at 7:15 in the morning and it was a little hard to get going this morning but hopefully this time will work and we can have some consistency to our schedule. I pray it isn't to overwhelming to Reed because right after therapy we go straight into speech until 8:30.

I have been trying to catch up with the #stayafloat2015 verses, here are several days worth, these are all really good and speak right to my heart right now.

4 little steps

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.

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. 

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.

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:

My Mom is a Better Writer Than I Am

My mom was blessed with the ability to express herself with words. She wrote this post a week after Reed's diagnosis and I wanted to share it here with you all.  My grandma Tansey's favorite verse is a permanent reminder in my head to lean on God and a reminder that He will bring clarity to your journey.  Please click over to my mom's blog and read about Proverbs 3:5-6