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.