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. 

First Snow Fall

I am going to try something new more for myself but also for anyone that is wanting more updates on Reed or more specifics about things. I am going to try and post every Monday about the previous week.  The post maybe small some weeks but that way I have something to look back on and help me remember things as well.

Things with Reed continue to hold fairly stead, last week he was pulling himself up into a standing position more but we know that doesn't really mean anything in terms of standing or walking on his own again.  But it is encouraging to see him having the leg and trunk strength to continue to do that. We have noticed more hand shakiness but nothing that is preventing him for using his hands.  Otherwise he continues to be same old Reed, happy, active and always wanting to be a part of what is going on.  He has recently started to like to play games on the ipad which is a huge thing for him because prior to this starting he has had zero interest in screen time.  Which we know is a good thing but lets be honest it would be nice to sit and enjoy a Disney movie with him ever so often.  We do have an appt coming up in Iowa City with Dr. Perlman just a follow-up to see how he is doing and really to make sure things are not getting worse.  The appt is December 15th and at this time all of us (Jesse, Reed and I) will have our blood drawn to be sent over to the Netherlands for Dr. Vam Der Knapp lab to review to hopefully finally pinpoint the mutated gene.

We do have a big decision to make about Reed's in-home therapy through AEA, at 3 years old the therapy transitions to the school so right now we are trying to decide if we want to enroll him in the 3 year old pre-school program or just take him up for the therapy for the time being and wait to enroll him next school year.  There are so many pros and cons to this for him so this has been a stressful decision for us to make but hope to have a final decision here this week.  Another struggle we have been going through is getting Reed on the state waiver which would make him eligible for additional health benefits.  Figuring out paperwork for this has been a headache but I think we are getting close. I am told there is a two year waiting list for this so the sooner we can get him on the list the better.  We continue to try and potty train, yes knowing that if we are successful he may lose this ability some day but not wanting to give up on "normal" life things we are going to push through and make a good effort at it.  He is pretty good at telling us when he has to go number 2 but has zero interest about telling us when he has to go number 1.  He also has zero interest in undies or pull-up also but the "store" may just run out of diapers one day :)

The first snow fall happened last week and Reed loved playing out in the snow.  We are very excited for the upcoming Thanksgiving week and can't wait to see our best friend Cole come home!  Lots of exciting things happening this time of year.  The most exciting being we will have a 3 year old next week!!! 

One Year Ago

I have been thinking about this date for months now, one year ago this reality started.  What was a normal morning turned into fear and so many questions by the afternoon.  On November 1st, 2014 Reed woke from his nap not able to bear a lot of weight on his right leg, when he tried to walk he would turn his foot in and then fall.  He didn't appear to be in pain but did appear to be frustrated and was fussy.  A trip into urgent care brought no real answers but a follow-up to a Orthopedic brought what we thought were finally answers a crack in the knee is what the doctor thought he saw but wasn't 100% so we decided to put a cast on Reed and wait two weeks to see if that helped.  It didn't and probably made his ability to walk worse.  Slowly we saw small signs of his ability to walk again come back but never gained back the full ability so our search for answers continued several x-rays later still brought no answers and blood work draws twice showed no infection. So after almost 4 months we headed down to Iowa City for an MRI and received the news that now shapes our lives.  Reed has Leukodystrophy.  That moment will be burned in my mind, if I could draw I could draw the room we were in, I could describe the moods in the room I could tell you where everyone was sitting or standing.  That moment will never leave me.  The last year has brought a lot of hurt in our family, a lot of questions, a lot of why but we have also been shown a lot of love and support.  You learn to live for each day to live to not take things for guaranteed, we have learned to love each other deeper, we have learned who and what are important in our lives.  Our daily prayers have changed our hopes and dreams for our son have changed.  We pray for a miracle, we pray for mercy on Reed's life, we pray for time more time, we pray for the doctors and researcher around the world that God will open their eyes and minds to an answer. We pray that we are being heard, we fear we are not. We have emotions we don't want to have, unrelatable, jealousy, sadness, frustration, fear he is missing out. Many times as we pray with and over Reed at bed time we feel unheard we feel like yelling at God to please just show us he is in control, but we know he hears us and we know this is our test, we know he has a plan, we know he is hold on to Reed harder then we ever could. We trust that God has Reed in his arms, we give Reed to the Lord because what else can we do what other calm can we find.  Deep down in my heart I just have a feeling that I know a treatment/a cure will be found in Reed's time, I am learn patience, in God's time not mine.

But...Reed is doing great, his disease has shown no big signs since last November.  His speech is making huge strides.  He is happy and a crazy little boy, he loves deep and is our hearts.  He is so smart he may not be able to get around like he wants to and may not be able to express his words just right yet but he catches on so quickly and he remembers things that just amaze us.  We trust this plan even if it ins't our plan, we live to conquer the day that is facing us and nothing further.

Therefore do not worry about tomorrow, for tomorrow will worry about itself, each day has enough troubles of it's own.  
Matthew 6:34

Therapy

Reed continues to go to therapy once a week and then sees in-home therapist 4 times a month, he works very hard in therapy well as hard as a 2 year old can. He definitely shows is personality in therapy when he wants to do something he is all in and if he doesn't want to do something he definitely lets you know.  We have some amazing people working with Reed and are so thankful for them all!

Wear Blue for Reed

I posted earlier in the month that September is Leukodystrophy Awareness month and we took part by wearing blue every Wednesday in September to honor Reed and bring awareness to Vanishing White Matter. On February 24th Reed was diagnosed with Leukodystrophy and then later Vanishing White Matter, knowledge is power with this disease and as there is no cure for the disease our hope and prayer everyday is that there will be a cure within Reed's time. Thank you all for your support for Reed, just like any disease and research money is the key as much as that sucks to say if you fill it in your heart to donate to the cause of vanishing white matter please visit,http://vwmfoundation.org/

Here is a collection of some of the awesome people in our life's supporting Reed and Leukodystrophy month, ‪#‎teamreed‬ ‪#‎whitemattermatters‬

UNI Volleyball

Again I am playing catch up, this was from a Facebook post at the beginning of September:

Reed had a very exciting weekend, Last week I received a very awesome message from Piper Thomas letting me know that the whole UNI volleyball team (players, coaches, managers) all wore blue for Reed last Wednesday and would continue to do so throughout the month of September. To which I told her I would love for the team to meet Reed, we were then invited to come to their serve and pass practice on Friday afternoon. Were we got to meet the team and talk to them a little bit about Reed disease. Later in the evening it was back to watch the girl in action and then again on Saturday afternoon. We are so excited to watch these girls play this season and can't thank them enough for their love and support. Thank you to Piper for her kind heart and thank you to Bobbi for letting us meet the girls and be apart your practice!!

 #teamreed #whitemattermatters#vanishingwhitematter #Staystrong

Team Reed Blue Out Volleyball Game

I am playing catch up, back in September the wonderful Jesup Volleyball team held a Team Reed Blue Out Volleyball Game in Reed's honor.  I coached at Jesup for seven years but have involved in the programs since I started playing in 7th grade.  We were very touched that they wanted to include their number one littlest fan in the team and have a special day for him.  There were shirts and headbands sold, everyone was asked to wear blue and a small presentation was made in between games to Reed and our family where we were given a donation for the Team Reed account and Reed was given a volleyball signed by all the players and coaches and a balloon.  Awareness is the answer, we love our community and all the support they continue to show us.  I truly believe we will see some for a treatment in Reed's time.  

Dear Children's Medicine Makers

Dear Children's Medicine Makers,

Just some thoughts from a mom, now I am not sure if maybe you all don't have children, or maybe you are not testing your products out on children, or maybe just maybe you are just that lucky that you find the only kids in the country that actually like your products.  But seriously what is with your flavoring system, would it be to much to ask to just not make children's medicine not taste like anything at all.  If water flavor is a flavor could we just make all medicine taste like that.  This would make the famous suggestion of mixing the medicine with juice or milk or water a lot easier!  Or here is an idea sole based on my opinion I would think most toddlers switch to apple juice first maybe you could make your medicine taste like apple juice.  I am not sure who came up with the great idea to flavor medicine like cherry or grape but try your own product it doesn't taste like either one of these things.  And to further the thought whoever thought to put red dye in the medicine you should be fired this is just a for-sure way to get stains on the child's clothes. 

So I thought I would suggest some product ideas for you to consider, pediasure has got the right idea with there product made into Popsicle form however my child doesn't like the flavor I am sure there are kids that do.  In my opinion if we could get all children's medicine in Popsicle form as an option I would probably pay two or three times the amount as the regular form.  Here is another idea fast dissolving tablets or even better Listerine made a fast dissolving strip some years ago and pretty much once you put these in your month there was no spiting it out.  Could we get children's medicine in this form PLEASE. 

Thanks for your consideration from a mom who is tried of forcing medicine down my child's throat only to have him spit it out anyways.  Your product doesn't help if we can't get a child to swallow it!

We Love the Park

September is Leukodystrophy Awareness Month

Please help us spread the word about Leukodystrophy and support Reed!

September is Leukodystrophy Awareness Month, and we thought it would be a neat idea to do something for Reed, I have seen on some websites that they wear blue on a certain day of the week to encourage awareness. Thought it would be neat to do something like that for Reed so we are encouraging YOU to wear blue on every Wednesday of September for Reed.  We choose Wednesday because that is what day his birthday is on this year. If you are interested in a Team Reed shirt you can contact Nicole Siems on facebook, but by no means do you need to get one we just ask that you wear blue on each Wednesday in September.  Also if you are interested in reading more about Vanishing White Matter which is the form of Leukodystrophy that Reed has please visit the VWM Foundation site, you can also make a donation in Reed's name here as well.  There have been some advancements in research and we are encouraged and hopeful that some form of help or treatment will be developed in Reed's time.  Any little bit will help towards developing this. 

Horses