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"

Merry CHRISTmas

Merry CHIRSTmas from The Havlik Family, we love you all and can't thank everyone enough for your thoughts, prayers and following along with Reed's story and support to help him fight this disease.

#vanishingwhitematter #findacureforVWM #teamreed

Conversation with Reed

Having a nice talk with my boy before daddy got home from work! 

Thoughts from a 3 year old about sleeping

Sleep...haha, In my opinion sleeping through the night for the first time is the second best day in your baby's life next to their birth that is.  How glorious that day is when you finally get a full nights sleep everyone wins.  In our case Reed didn't sleep through the night until 15 months uggh exhausting but the routine of getting up during the night became second nature and we didn't mind but once the change happened it was glorious and boy he was easy to put to bed, put jammies on, rock and cuddle for a while then he would point to his crib and I would lay him down leave the room and he would put himself to sleep and sleep through the night. 

And then it happened I can remember the date exactly... 

(all being played out in his mind) baby figures out that mom/dad just get to walk out the room and that is it well we will see about this.  Every once and a while they rub my back and that actually feels pretty good so tonight I am going to ask them to rub my back when they lay me down for the night, lets see what happens.  Bedtime rolls around and baby's plot is playing out jammies, rock, point to bed, lay me down, look at mom AND say "back", mom looks at me puzzled so I ask again, "back" oh boy she is catching on I see it in her eyes, "oh how cute baby wants his back rubbed tonight, okay baby i'll rub your back."  Rub, rub, rub 10 minutes later baby relaxes sneaked out of the room, but baby thinks wait a minute mom left. Well tomorrow night it won't be that easy.  Next night rolls around jammies, rock, point, lay, "back", oh okay baby rub rub rub stop, nope not this time mom baby rolls right up into sitting uggh okay rub rub rub rub relax stop, nope up again uggh, okay rub rub rub relax stop leave hand on back wait wait wait baby sleeping sigh, sneak out.    This works for awhile but baby catches on and wants more time with mom so he thinks while I am at it I think I will start having a hard time relaxing at night as to make moms brain go crazy trying to think of ways to help me, enters meds; okay mom you win this battle melatonin to the rescue but wait that stuff wears off at some point.   So mom now that you have caught on lets start getting up in the mild of the night again just because I miss you and need a snuggle.  

(in moms mind) 

Okay baby that is fine we can do this its a phase I am sure, a little struggle to get to sleep and getting up once a night no biggie I'm a light sleeper anyways lets battle.  Oh baby by the way since we are fighting this anyways down goes your crib and hello big boy bed, if we are going to fight this anyways we might as well throw that wrench in to play also.  

(Baby)

Now I got mom where I want her, she now gives me meds to relax me, I got a big boy bed so now she has to lay in bed with me until I fall asleep and then roll out or my bed and crab walk out of my room as to not try to make any noise.  But for fun some nights I like to let mom get out of the room get to the steps of her room and as she is walking up the steps I know there is a creak on the third steps so I wait for her to step and then boom MOM WHERE ARE YOU, hahahaha.  Start all over again.  But now I think I am going to start to get thirsty in the middle of the night maybe just once a night at first but on certain night most the nights before therapy I am going to wake twice maybe three times just to ask for some milk and make mom lay with me for a few minutes all while she has to pee because she is so concerned to get to me and get me back to sleep that she doesn't pee first haha.  I love this game no biggie to me I get to nap in the afternoon and rest up for the next nights games and snuggles with mom again.  I also love winter time because I will whisper to mom that I am cold but then every blanket that she tries to put on me won't be right until the very last one.  Also I think since I am three and now have a full understand of what is going on and still love my binkies I will require that I have at least 4 in arms reach at all times in the night and if I can't find one I will flair my arms until I find them all then proceed to pop each one in my mouth until I find just the right one for that particular minute well until that minute is over and then decided I need to repeat the whole process all over again.  I guess I do feel sorry for mom and I know she craves for her bed so I think tonight I will tell her I want to go lay with dad up in their room but when we get up there and we lay down for a few minutes I will relax for exactly ten minutes just to make mom think this might be working and then BOOM I will tell here I want to go back down to my bed again hahaha.  And then finally when mom is about to cry or break; all will feel just right and I will fall asleep.  

Note from mom...I am beginning to feel like a failure as a parent this week hehehe hence the post, and on a side note when aunt Andrea put him to bed this last weekend and he thought we were gone for the night he slept through the night, also when he stays at grandma and papa's house he sleep perfect as well from what I am told.  Someone is getting played by a three year old and the finger is being pointed at me. 

Thanksgiving

Thanksgiving was great, last week was pretty busy, we celebrated aunt Becca's birthday on Monday with family dinner at Olive Garden, Reed was very adamant that it was his birthday and would get upset when we said it was Becca's, he is very excited for his birthday, and we can't wait to celebrate him!  Thursday we spent the morning relaxing at home watching the Macy's parade and in the late afternoon and evening we celebrated Thanksgiving at Jesse's dad's house then it was home to pack and get ready for a weekend at aunt Andrea's house.  Jesse had to work Friday so we called papa over to play while mom got everything loaded into the truck, papa also helped put up the Christmas tree then he had to go to get ready to leave himself.  Reed and I got to spend some time decorating the house and wrapping a few presents.  Daddy was supposed to get off work at 3:00 but Reed was so excited to go pick him up that we left Jesup at 2:00, he was also tired because we were holding off on nap to try and get him to sleep in the car on the drive.  He did sleep on the way in to get Jesse but after that we was wide awake the whole drive to Andrea's. 

Best I could get right now!

We had a great time at Andrea and Brad's spending time with family, eating, crafting and just relaxing. Becca wasn't able to join us until Sunday morning but that aloud her to bring Grandpa Mealhow with her so we ate Thanksgiving dinner on Sunday and packed up and headed home.  Of course the weekend wouldn't be complete without the truck breaking down on our way home, but thanks to youtube Jesse unplugged and replugged a few things in and we were able to crawl home and get the truck to the shop to be looked at.  So here we are back to Monday again and ready for another week, but a very exciting week because in a few days we will have a 3 year old!! 

Craft Time

Ninja Turtle Hat Aunt Becca made him

With all the good and fun in the week which are great distractions I find myself lately pleading with God to heal Reed all day everyday, we still find it difficult to except this disease. We push on every day but as time moves forward and we find ourselves having to think about or plan about future things and we realize just how difficult it is to have acceptance.  I find myself at night repeating over and over and over again in my head to God to please heal him, to please provide a sign that he is in control that he has a plan.  We know and believe he does have a plan deep down but we are human and wanting that reassurance right in front of your face takes over a lot.  I think especially with Reed's birthday so close the realization of life to come is hitting both Jesse and I hard, how much longer will we be able to carry and hold him, will this house work in the long term to have room for the equipment Reed will need, school and the logistics of all of that.  Again we try to remember one step at a time, one day at a time but sometimes that is hard not to let your head wonder into things you don't want to think about.