Reed Update

I wanted to actually take a minute to write about how Reed is doing, I realized I have done a whole lot of posting for help with research but not a lot of updating about Reed specifically lately. Reed is doing okay overall physically, I didn't realize how far he has slips until I made that video last week just a few short months ago he was still taking a few steps on his own he is no longer able to take any steps on his own anymore but does try with help from us under both arms at times. He can still stand along furniture and can pull himself up along the furniture but not up on the furniture any more. His stand does look pretty painful however but it must not be to him because he doesn't complain about it. To put it into picture for you he pulls himself on the tops of his feet think almost like a ballerina but not on to the tops of toes but top of foot, then he adjust his feet to the bottoms and sometimes needs help fixing his feet (see the picture if that helps). The next problem here is his right foot has gotten so bad that he rolls that ankle in and then stands on the outside of the ankle, ouch. See picture. We had a check up in Iowa City last month and things seemed all be okay with the doctor but he had some concerns about how tight Reed's legs/ankles were getting and encouraged us to really focus on stretching and also talked about night splints. All three of us also had our blood drawn and sent off to Amsterdam for the doctor over there to test, the labs here in the US were not able to find the mutated gene in Reed but the doctor in Amsterdam have some different technology so they are taking a look. What they have found is one mutation on one gene and one in another but not two in one gene and there has to be two in one for them to declare that is the gene that is causing the disease just the one mutation in one gene would not cause a disease (if that makes since). So back to his ankles this week I freaked out a little because his right ankle was so stiff I couldn't get his shoe on, so we are really needing to be more diligent about getting those taller braces on him even though he fights so much putting them on, we are also looking into those night splints but are worried about his sleeping with them since he isn't a great sleeper, so please pray for these things. We have noticed some more shakiness in his arms but it hasn't affected his ability to use them. His speech has come such a long way from a year ago and he is so smart even though he doesn't quite have all the words he needs to communicate sometimes he finds away and has an amazing memory! Overall I would still say things are pretty steady and we thank God so much for slow progression, I know deep down in my heart God will cure Reed and we are patiently waiting for that day! (It's a feeling this mama has that I know is to be) he hears us, he knows our cries for help and he will answer in time. Again thank you everyone for all the love and support, keep those prayers, good thoughts coming!!

Reed's Journey

Grab a tissue

Please watch until the very end

Help with Research:

https://www.crowdrise.com/findacureforvwm/fundraiser/erikamealhowhavlik

Come to me

For Christmas every year my mom gets my sisters and I devotionals for the next year.  I would say I am at best ok at reading them I try to be a daily reader but I don't set out specific time each day to read in it.  Well new year new beginning and I am at it again but behind already this morning I opened up my book called Jesus Calling Enjoying Peace in his Presence by Sarah Young to day one, it was such a good one and I am so glad I did not skip over it so I thought I would share it with you all.  This passage is such a good reminder to me, especially as of lately when I feel so much like God is not hearing me, he is not hearing our cries for help for Reed.

Many nights as I lay with Reed while putting him to bed I pray/we pray for healing, for answers, for direction for not only us but for God to give the doctors and researchers direction, to see God's plan for Reed, to use Reed as a witness to God's love/power/mercy, to use Reed as a vessel to spread God's word.  Most nights its a calming time for us/me but some nights, some nights of struggle to get to sleep or complaining of pain, or just weak moments for us, we feel so unheard we cry out to God to show himself to us, to hear his voice, we cry to see his plan.  This devotion is a great reminder that God hears us no matter what, its a great reminder of his attention and love for us, and a great reminder that God has a plan for us and in his time not our the plan will be shown.  

"Come to Me with a teachable spirit, eager to be changed. A close walk with Me is a life of continual newness.  Do not cling to old ways as you step into a new year. instead, seek My Face with an open mind, knowing that your journey with Me involves being transformed by the renewing of your mind.  As you focus your thoughts on Me, be aware that I am fully attentive to you.  I see you with a steady eye because My attention span is infinite.  I know and understand you completely; My thoughts embrace you in everlasting Love. I also know the plans I have for you: plans to prosper you and not to harm you, plans to give you hope and a future. Give yourself fully to this adventure of increasing attentiveness to My Presence. -Romans 12:2; Jeremiah 29:11"