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

Post It Note

Found this while going through an old note book, perfect reminder and is a needed a daily reminder.

We Made Gak

When I was younger I was always "experimenting" with anything I could get my hands on, I loved to mix together random things and see what happened, I even started the microwave on fire because I was trying to make rainbow crayons by melting them together in a Styrofoam cup.  I think because of this my mom and dad bought me a book with all sorts of homemade experiments. In this book there was a recipe for Gak which consisted of Elmer's glue, liquid starch and food coloring, I loved making Gak it was easy and fun and I made it often.  

Reed LOVES to be outside and we are always trying to think of new activities we can do outside so the other afternoon we ran to Wal Mart and got the supplies to make Gak. We got home and got to mixing, he loved it and at first he was a little cautious of the stick blob but it didn't take long for him to dive right into it. 

Also as you can see in the background of these pictures their are spilled dried beans everywhere, that is another outdoor activity we do as well. We have a container full of dried beans for him to scoop, dig and dump in. 

Side Note: if you are going to make Gak make sure to use Elmer's glue, I guess the off brand of glue doesn't work.

Soaking Him All In

Reed has been having a rough week falling asleep, it has just been impossible to get him down at night and have him fall asleep.  Last night as I stood over him waiting and watching him finally relax and slip into sleep I began to think about all the things you are told to not do or be careful when doing when you have a baby.  Don't let them fall asleep while nursing or with a bottle, don't give them a binkie or a let them suck on their thumb, to name just a few.  Well let me tell you moms as I watched Reed sleep last night he had a binkie in fact he has around 8 binkies in bed with him for fear from mom and dad that if he wakes in the middle of the night and he can't find his binkie he will fully wake up and not get back to sleep so why not have 8 in there with him one is always in arms reach.  He also had a bottle of milk, that is right a bottle he is two and a half and yes he will only drink milk out of a bottle.  So why fight it if that gets him to drink milk and helps him relax at night then so be it. Last I checked Jesse goes to bed every night and doesn't need a bottle or milk; myself to, obviously something we grew out of.  Same with the binkie or for myself a finger sucker I grew out of this when I was ready also and I am sure Reed will as well. So why stress about those little things and  just enjoy watching your little one sleep because one day it just won't be the same to watch them sleep.  Let me tell you moms and dads you are doing great whoever you are and however you are doing things. Google was my best friend when Reed was born as I am sure it is or was for most you, every little hiccup, gassy tummy, to spot I found I googled. And thank God for sisters that are nurses that field you every call with a crazy concern or question, and to even further that thank God for doctors who your sister works for that also field phone calls or text messages from your nurse sister late at night sometimes to answer your crazy concern or question.

Like I said Reed has been having a very rough week falling asleep it happen every couple of months. The first night it happened I was just so concerned to get him down to sleep because I had something I wanted to get done before I went to bed myself.  As I stood there hunched over his crib, oh yes still in crib mom not ready to put the work in to transition him, and he looks to me and asks for me to rub his back I obliged 45 minutes later I was able to put his small little monkey friend on his back to make him think my hand was still there and I sneaked out of the room.   Day two same thing but this time I was going to let him cry it out a little bit, in and out, in and out probably would have been less time if I would of just stuck it out and put the time in.  Day three same thing wants his back rubbed, wants to rock, doesn't want to be put down, an hour and half later I crave I need to lay down also hes coming up to bed with Jesse and I. No sleep for us tonight, Jesse with the fear of rolling on him, me with the lack of ability to fall asleep when he is in bed with us.  1:00 am rolls around I decided in order to try and get some sleep myself I am going to try and transition him to his bed or we will be sleeping on his floor. He transitions fine but wakes enough to ask for his back rubbed but quickly falls back into a deep sleep, again I cautiously creep out of the room.  As I laid in bed watching him on the monitor I couldn't help but fill guilt that I should be savoring the extra snuggles that I don't normally get, I should just sit back and enjoy that he wants his back rubbed and wants to rock just a little bit longer.  So I decide if we have troubles again I am just going to sit back and relax and enjoy my extra time with my boy.  So again last night rolls around and he was extra tired from the lack of sleep the night before but we let him stay up a little longer hoping he would be able to relax and get comfortable quicker. And sure enough we go to rock and pray before bed and he looks to me and ask for his back to be rubbed, so we rocked and snuggled and rubbed his back and I soaked him in and then he laid down fine he wanted me to stay with him but he relaxed and feel asleep just fine eventually. So as I stood there last night I thought about this post I thought about holding my little boy for as long as I could because he won't be little forever and I thought about all the comforts that he wants/needs to have in bed with him to fall asleep and how it is fine that he has those that some day he won't need or want those things any more. So moms and dads out there you are doing great, soak up your babies, don't stress about the "rules", call those nurses or doctors about your silly questions, and appreciate the snuggle time when you get it all the other things that need to get done can wait.

And becuase I can't leave a post with just text in it here are a few recent pictures:

This is what our typical afternoon looks like, outside (we don't dare go inside until bedtime), swimming, and chips

Got a slushy after playing at the park

He wanted a selfie because he had no shirt on and that was funny and because we both had glasses on. 

Rain Rain Go Away and a crazy dance session (don't worry I was not driving)

The Building of a Model T

This year our town celebrated  100 years of Farmer's Day, so the theme this year was "A Century of Memories"  our neighbor and plans the annual event every year and also has a 100 year old Model T. So we thought what better way to take part in this years festivities then to build Reed his very own Model T to drive in the children's parade!  Jesse and I spent probably close to 9 hours constructing the car, we would put Reed down for the night and then head out to the garage and work for several hours before we headed to bed.  The children's parade is just a short 3 block walk but it was all worth it.  Reed was very excited for his car and there was enough room for his best friend to ride with him, they have rode together in the parade for three years in a row now.  We also now have Reed's Halloween costume completed :)  

Now on to the Model T:

What a great weekend...

Some of our weekend in pictures, it was a fabulous one.  Lots of family fun at Farmer's Day, pool fun, some time at the golf course and shooting guns!!