Wednesday, December 28, 2011

My Handymen

Preston has had such a fun time with his Daddy since Davin has been out of school the past couple weeks and gets to hang out with daddy everyday! ;-)  Preston always wants to do everything Davin does so when Davin was measuring and everything to put up my shelf Preston was right there too...helping ;-)  
That is right, Preston knows how to use a stud finder...or at least make it light up. lol

Sunday, December 25, 2011

Christmas Day!

Christmas Day we spent all day at home relaxing while Preston played with his presents. ;-)  Preston got a cars couch, cars twin bed set, cars magnetic drawing thing, cars plastic bib, wooden food cutter set, hot wheels cars, a toy motorcycle, xylophone, floaties,  foam blocks, puzzles, a book and a wooden train.  He did play with all of his toys but his favorites were his cars couch, toy motorcycle "momo", and hot wheels cars. ;-)  A funny thing Preston did when he first walked out and saw the presents he took off his construction hat (that he was wearing) and fixed his hair before going over to his presents lol! A highlight of Preston opening presents was that after he opened his momo he didn't want to put it down to open more presents so he tried to open them one handed with the other hand holding the momo. lol  Another was after he opened his hot wheels cars he hugged them and "danced" or i mean wiggled. ;-P  
Davin got an easel, paint, paint brushes, a bunch of canvases, a couple video games, a gift card to game stop, a couple shirts, and a flashlight.  He was happy with his gifts and surprised too at the art things i got for him.
I got a jewelry box, robe, earrings, socks, 2 pairs of shoes, space bags, nail polish, money for my blog book, body wash, monopoly deal (it is a fun game!), and phase ten the dice game.  A very good Christmas for me too! ;-)
Santa came!

I only took videos of Preston opening presents so i didn't get any pictures of the actual opening of gifts.  This is Preston with his new "momo" toy motorcycle that grandma and grandpa Burke got him.  Playing with toys in his construction hat...what more could a boy ask for!

We had Preston open all of his presents first so he would leave us alone to open worked for the most part ;-)
opps...we did get a picture of Preston "taking" daddy a present for daddy to open.....or rather showing daddy how to open it. lol But no pictures of Preston opening his own. ohh well ;-)
He is playing with something other than the momo...
haha not for long tho...the momo needed a ride on the train!
laying in his cars fold out couch...with momo of course.  He kept putting all his cars into the sleeping bag portion of the bed and then crawling in. lol

Christmas dinner with just the three of us.  It was pretty yummy if i do say so myself ;-)  Our microwave died just as i was finishing the potatoes...thankfully it came back to life the next day ;-P 

I could not get Preston to smile! I didn't realize till i was going through the pictures that i didn't really get a picture of him smiling on Christmas! sad day! He was sick but he did have a great day...promise! 

Playing with toys!
Preston kept wanting me to put his floaties on lol

Saturday, December 24, 2011

Christmas Eve!

On Christmas Eve we went over to Heather and Nate's place for some Chinese food and Christmas story reading....also for Preston to play with cousins! It was a nice night and Preston sure was wore out by the end of the night too!  I didn't get a picture of it but they had a slide that Preston could climb up and slide down that was small enough for him to maneuver over...he loved it and all the attention his older cousins gave him!
Preston and his cousins playing with big blocks!  from left to right... Davin, Ryan, Issac, Preston, Trenton, and Katelynn.  

This is Trenton wearing a Mexican hat  that all the kids kept putting on...Preston even tried to put it on their dog Moose.  haha

Family photo...I didn't realize that Davin and I were both wearing gray until this picture. lol go figure!
Preston really wanted to help his cousins open their Christmas jammies!  
During the reading of the Christmas story Preston was in the kitchen hanging out with their dog Moose lol who really is a huge dog but very friendly!
We went home for Preston to open his own Christmas jammies on Christmas Eve!
He is pretty good at unwrapping presents now! haha
He tried putting them on by himself...he was a very sleepy boy!

We all opened our Christmas Jammies...mine are gray so they blended into my shirt ...and well Preston is eating typical

Wednesday, December 21, 2011

a couple belly pictures! Finally lol

I keep forgetting to take belly pictures!  I am soo terrible at this and i feel HUGE so i hate having to think about taking pictures too ;-P  I am 26 weeks and 1 day pregnant in these pictures...only about a week away from my 3rd trimester and this is my first actual belly picture. sigh...i totally failed this pregnancy with the pictures and last pregnancy i don't have very many so ya.  sad day!
Preston couldn't resist being in a picture. lol

My butt is totally trying to out grow my stomach lol i think it gets jealous or something ;-P
haha just had to add a picture of Preston  for good measure ;-)

Monday, December 19, 2011

The Trials of the Year

Preston was put into the hospital for a strep infection that somehow got into his blood from 9/30 to 10/2.   The funny thing is that the nurse told me that Preston probably just had a virus and it was pointless to bring him into the doctors office.  When i did bring him in to the office anyways he had a fever of 105 and that was on Tylenol so the doctor sent us to the hospital.  It was scary but i felt good that he was there and they could figure out what was wrong.  Anyways while in the hospital he got better quickly on the IV antibiotics. He is a tough guy.  However, while we were at the hospital the doctors discovered Preston had some labs that were quite high.  They had us redo the labs a week after he was released to see if the labs were related to the illness.  
This was a couple hours before i took him to the doctor and then the hospital. He wouldn't get off the couch...i just knew it wasn't a virus! Stupid nurse!
This is about an hour after Preston was admitted. He was very happy that Daddy  finally made it to the hospital with  his puppy. ;-)
 The labs weren't any lower so his comprehensive metabolic panel was run every week including some other various labs.  The doctors thought he had hepatitis but he didn't have hep A B or C. Soo Preston's pediatrician recommended we see a gastroenterologist but we couldn't get him into this specialist till November.  Sadly.  When we finally saw the gastroenterologist he had a few more labs done to make sure it was actually affecting the liver.  The lab that measures CK came back super high indicating it wasn't the liver at all it was his skeletal muscles.  All that wait and the specialist couldn't do anything now.  The gastroenterologist was trying to figure out which doctor to send Preston too. It was actually the gastroenterologist's nurse, she was great!
She said we should see a physiatrist (they specialize in physical science and rehab...i hadn't ever heard of one before) but all of them were up at Primary Children's and didn't have any openings till January and at this time it was the beginning of November!  The nurse told us about an adult physiatrist in Orem by the name of Stewert King who was really good and that i should see if he take a look at Preston.  When i called Dr. King's office the secretary said that he couldn't help Preston but would be willing to look him over and make recommendations on what to do....that same day! YAY! Of course i took him that day!  Dr. King was great and very kind.  He said that Preston's CK number of 81,000 was the highest he had ever seen!  He thought it was too high for muscular dystrophy as did our regular pediatrician Dr. Clayton.  Dr. King said that he had connections at Primary Children's Hospital and the University of Utah so he could find the right doctor to take him too.  Dr. King's office called and said that they found a pediatric neurologist who specializes in nuromuscular diseases and that he would see Preston the Friday before Thanksgiving. It was such a blessing to not have to wait til January!

When it came time to take Preston to see the nuromuscular doctor we all went...Davin, my mom, and me.  The doctor was pleasant but to the point.  After looking Preston over he told us that even though his CK was super high he still said that everything else pointed to Duchene Muscular Dystrophy, which is what we were dreading.  Duchene MD is the most common form of MD but also the worst form. The doctor ordered a muscle biopsy to confirm the diagnosis.  Basically DMD is a genetic disorder that makes the skeletal muscles deteriorate till Preston no longer has strength to move his body and is fully dependent on others.  He will probably need braces to help him walk in the next few years and between the age of 10 to 12 he will be in a wheelchair full time, by the age of 18 he will be fully dependent on others to care for him.  Currently, most do not live past the age of 25.

This news, as you can imagine, is has been quite devastating.  We cried a lot and grieved for the life Preston will not have.  We have been told that we will grieve many times throughout his life and that is normal.  It is amazing how many plans we make for our children even when they are so young.  We want them to graduate high school, go to college, fall in love, get married, have a family of their own...those are just basic expectations...and when some of those most likely will not is extremely difficult.  We felt mad and sad thinking of how his life is now going to be....will he have friends? will he graduate? will he get mad/sad about his disorder? will he have a girlfriend? will he go to prom? will he be social? will he continue to smile? ......I have found that thinking ahead to the struggles he will have does him no good right now it just makes us sad.  Also that living day to day and enjoying the little things, the everyday things are all that matter right now.  We have the faith that Heavenly Father will help us raise Preston and help him through his struggles.  I believe the biggest comfort and peace i have received throughout this tough time is the belief that Preston is a very special spirit and means a lot to Heavenly Father.  That Heavenly Father only gives these challenges to people who are strong and capable of handling these trials.  Preston must not need as much time on this earth to learn all the things he needs to learn as the rest of us.  I am so grateful that Preston is a part of our family and that Heavenly Father trusts Davin and I enough to give Preston to us. He is such a sweet guy and brings so much joy to our lives. I can't imagine life without him.

Preston did great for his muscle biopsy on December 7th at Primary Children's Hospital, up in Salt Lake City.  He took a while to wake up and did throw up 3 times on the way home but he wasn't crabby or we were happy.  He is such a tough guy too because he didn't even need the strong pain meds just come Advil and he acted like it was no big deal having 2 pieces of muscle cut out of his thigh. yikes! Also the doctor had us leave a piece of tap over the wound so he would leave the stitches alone for 12 days!  The stitches themselves were the dissolving kind, thankfully, so we won't have to take him back to have them removed.  We got to take the tape off today and i felt bad because there were still 2 pieces of the stitches hanging out either side so when i went to rip the tape off it got stuck...Preston didn't cry but he sure had a concerned look on his face when i tried to pull the tape off.  Davin grabbed some scissors real quick and cut the long pieces of the stitches off.  Preston is all better now! It was about a 1 and a half inch case you were wondering.

Needless to say we recently got the muscle biopsy results...he does have Duchene Muscular Dystrophy.  Now we are just waiting for Preston's insurance to approve genetic testing for Preston. When the doctors know exactly where Preston's mutation is then they can determine if there is a gene therapy/treatment that can slow the progression of muscle deterioration.  These therapies are all new, there is no "cure" for MD as of now but there are many researchers working on treatments.  We remain hopeful.  I will also need genetic testing done to see if i am a carrier for Duchene Muscular Dystrophy since women are the carriers unless it is a random mutation.  If i am a carrier then our daughter will have a 50/50 chance of being a carrier too.  Also if i am a carrier and we have another boy he will have a 50/50 chance of having DMD.  But i am getting ahead of myself...we will just have to wait and see how everything plays out with Preston's genetic test and mine.  As for now we just have to wait...which sometimes can be the hardest thing!

Sunday, December 18, 2011

December Festivities

We have had quite the December already!  Still can't wait till Christmas though ;-)  We went to see the lights at Temple square while Todd, Catie, and Dave were in town.  It was COLD. we really had to bundle up!  After the lights we stopped at a McDonald's for some hot times!  
All bundled up!

Ok so this is us at the temple lights.  left to right...Todd, Megan, Scarlett,  Catie, Seth,  Rachel,  Jared, Sarah, Preston, Dave, Davin and I are up case you didn't know ;-)

So friends of ours Emily, Sam and their little baby  Becky took us to the festival of trees up in Salt Lake City.  So for the "Festival of Tree's" people decorate Christmas trees, ginger bread houses and other miscellaneous items to auction off and the proceeds go to the Primary Children's Hospital.  There were tons of  cool things!  
A motorcycle tree made out of tires!
UP themed tree
Family picture at the Festival!
We decided it was time to take Preston on the train at the mall since every-time he saw it at the mall he would freak out because he was so excited!  The train just drove around the mall.
Preston was so excited that he wouldn't smile for the camera...oh well lol

First time on the escalator...Preston didn't quite understand that you just need to stand there.  lol oh well , he enjoyed it!
Happy Early Christmas to me!  A portable dishwasher!. I guess i am officially a mom now that i like getting appliances as gifts. lol  ;-)  I love it! 
We went to the Speir Christmas party in Farr West, Utah.  He loved  being pushed around on the razer scooter...instead of building ginger bread houses.
Preston and Davin's second cousin Issac.  They were using the barbie house phone lol
Preston picking out his white elephant gift. 
Preston opening his gift.  So we felt bad because we got some pretty cool gifts compared to what we brought.  lol  We got the games quiddler, farkle, and a toy laptop for Preston.  ;-)
Davin won a dollar playing Bingo at the Christmas Party.

Took Preston to see Santa with Scarlett.
He was so excited!
He was too busy smiling to pound Santa's fist lol
Cousin photo!
Santa was telling them how good they are lol
at the toy store by santa...Preston had a good time pushing the go cart
Although he thought the bear had been on it long enough and it was his turn lol
He LOVED riding on the quarter 
Riding double is double the fun!
Preston loves giving Scarlett hugs! My sweet boy!

I was cleaning for our Christmas Party when i heard Preston struggling i looked over and he had somehow fallen into a gray bin lol he also had gotten a hold of a computer cord...such a little stinker! 

Davin finally put my pictures on the wall!  I love it!

Our Christmas party!  We decorated cookies and had a white elephant gift exchange.  left to right...Sarah, Jared, Ali, and baby Harper. It was fun and i am glad we did it.  ;-)

haha Bean and Robbie decorating cookies!
Seth, Megan, Stephen, and baby Dayton.

Someone made a life sized model of Mater from CARS.  We had to stop and show Preston.  He was super excited to see Mater.

It was at a Christmas tree lot so he was towing a tree!

Preston kept pointing at him