Sunday, May 22, 2016

Rehab Doctor Visit

On our discharge paperwork from our visit to Children's last week I saw that they listed Raygen's surgeries in order.  I am just in awe of what she has went through and conquered.  It's amazing to me that all her surgeries look so small when typed out on paper, but each one was a chance we could have lost her.  Thanks to an amazing God, hospital and an amazing daughter she fought through each one and is certainly a hero in our book.
My little wiggle worm.  This girl no matter how large the bed ends up doing circles in her sleep.  I've learned the safest bet is a mattress on the floor.  She hates blankets on her as well so if you try to cover her up she immediately kicks them off.  She is total opposite of her mom in that category.  I have to have blankets :0)
Raygen did wonderful on her visit to see the Sports Rehab Doctor at Seattle Children's last week.  The reason I wanted to take Raygen was to see if there was anything I needed to be doing to improve Raygen's function on her right side.  The great news is the doctor said "No."  She said that Raygen was doing great.  She said that Raygen won't ever walk completely normal because she did survive a stroke that does affect her right side movement.  The doctor also stated that she is happy to see how Raygen runs and walks and even how she uses her right hand.  Raygen doesn't use her right hand much, but the doctor stated she used it enough not to need any braces :0)  She also stated that Raygen didn't need any bracing for her feet :0)  I am so relieved because when we did try to brace Raygen's hand and feet she refused to use them.  She didn't walk and didn't use her right hand at all.  Basically, Raygen will come up with her "way" of doing things and that's okay.  It may not look "normal," but really what's normal?  Raygen's stroke affected so many areas of her body and now that she is growing and becoming so active we are seeing more and more of it.  Also, where her brain was damaged with the stroke is very close to the language area of the brain and so that may be the reason she is speaking yet?  I also learned that Seattle is doing some studies on CHD children and brain development and they are coming to the conclusion that even full term CHD babies brains when they are born are not developed full term.   Their brains are still that of a preemies??  I am so thankful that we have a wonderful group of doctors that continue to research and discover so many amazing things that will help the lives of our CHD babies here today and ones to come in the future.

XOXO

Erin

Tuesday, May 10, 2016

Mother's Day

I had a wonderful Mother's Day Weekend.  Saturday we had a huge family picnic to celebrate my Grandpa's 82nd Birthday and it was fun to get the whole family together.  It was a beautiful sunny day.   
Sunday we took Zoie saddle shopping and Raygen got a new cowgirl hat.  She loves it.  She looks so cute in it.  
I love these two wonderful girls.  They make my life so much fun.

Tuesday, May 3, 2016

Dressing Up


Raygen has been into trying on my clothes lately :0)
It's the cutest thing ever.  I love how she has to go look in the mirror and see how she looks. 
My girl busy at work. Raygen has decided she likes to sit in the office chairs through out the day.  She's very professional. 
Raygen and her cousin Layton.  There some what playing? at least sitting close to one another.  That's a big deal for Raygen. 
I just love how grown up she looks in this picture.  There are moments when I just look at Raygen and know she is wise beyond her years.   
Trying on Mom's boot socks, lol!  I think Raygen and I have the same taste in clothes, lol!

I just love this girl so much.  There isn't a day that goes by that she doesn't inspire me, make me laugh, or teach  me.

Sunday, April 24, 2016

Nero Update


Friday Raygen and I headed to Seattle Children's to see a Neurological Developmental Specialist.  It is only the first of many visits in our future.  This was basically an appointment to make an appointment, but worth it.  This way the specialist has a base line of where Raygen is.
In true Raygen form, we started the visit off with a huge puke all over the exam room.  This is something that happens when Raygen works herself up, so I'm used to it.  I don't think the doctor was though, lol!  When Raygen realized that nothing was going to happen to her she became her happy, laughing, wonderful self.
The first step in trying to figure out if there is something besides autism going on with our girl is a 45 minute clinic appointment with a few different doctors, where they play with Raygen and interact with her in a playroom setting and observe.  After the play they will meet and discuss what their thoughts are and then relay those thoughts to Randy and I.  I am very nervous, but excited for this appointment.  I really want to make Raygen's future as bright as I possibly can and knowing if there is a better method to teach her or understand her, I am all for it.  Regardless of any test result we love her just the way she is. 
Raygen also had her 5 year wellness check and is 38lbs :0)  I so glad my girl is finally putting on a little weight. 
I'd like to welcome AJ to our family.  Zoie's new best friend.  I am so excited to help make this beautiful girl's dreams come true.
 
xoxo
 
Erin

Sunday, April 17, 2016

Trike Riding


 
 
 
Trying to work a little fun into physical therapy.  I don't think the trike is a big hit yet, but we will keep working on it :0)

Tuesday, April 5, 2016

Another week...


Sunday is always food prep for Raygen.  Cooking up some meat for protein and I like to freeze my banana's so they last through the week.  Plus there a great snack for Mom :0)
After leaving Walmart on Saturday.  It was crazy!!!
She loves making a mess.  Rubber bands go a flying everywhere when Raygen's around :0)
Yesterday Raygen ran into my desk at work.  Not her first black eye and probably not her last, but makes me so sad.  

xoxo

Erin

Wednesday, March 30, 2016

Easter and Doctors


I took Raygen to the doctor on Monday for a check-up.  It was day 14 of medicine trying to control her cold that she just can't kick.  She has improved a ton I am happy to report and so relieved.  We are doing two weeks of a probiotic and doing mineral oil drops in her ears to help break down the wax so we can get a good look at her tubes.  We will go back to the doctor and have her 5 year wellness check, hopefully her ear tubes will be unblocked, and she will have to receive two shots :(.  The doctor recommended we hold off another two weeks before returning to preschool.
Raygen loves to play with the rubber bands at work.
I think more then anything Raygen just loves making a mess at work.
Raygen enjoyed Easter.  It wasn't a sunny day here in Washington so we pretty much stayed home and inside.  We did go visit the Grandparents early in the day, but we had a nice dinner at home and spent the day relaxing.
Even took a nap and that never happens in this house.
 
XOXO
 
Erin
 
PS: If you live in the Lewis/Thurston County area and want to be part of our new Mended Little Hearts Chapter please send me a message.  Were looking for local members ;0)

Wednesday, March 23, 2016

Happy Birthday Raygen!!!



Happy Birthday to my amazing daughter.  We love you so very much!!!

xoxoxo

Mommy

Monday, March 21, 2016

Raygen's 5th Birthday Party: Part 1







Raygen's 5th birthday is Wednesday.  I can not believe she will be 5 already!!  I am just so in love with this amazing little girl.  For this birthday we thought we'd go all out and celebrate it at the Hands On Children's Museum in Olympia.  It was great!  Raygen loved it.  I will say there were a lot of people and a lot of parties going on, but I think everyone enjoyed themselves.  I know Raygen loved running around and watching everyone.  She really didn't check out her gifts till we got home and she only looked at a few before she was ready for bed.  You know it was a good party when your kids sleep all night long after :)
 
Can't wait to share all the pictures with you.

Wednesday, March 16, 2016

Getting By...


A picture is worth a thousand words.  This one tells you how Raygen is feeling today.  We took her back to the doctor on Monday and she was prescribed some more antibiotics in hope it would help clear up her congestion.  Monday night she woke up around 3am getting sick everywhere.  It was so awful.  I felt so bad for my baby.  It makes it even harder when she can't tell me what hurts so I make guesses on how to make her feel better.  We have decreased her feeds and what we do give her is in small amounts through out the day in hopes that she keeps it down.  We have stopped her diuretics till she is back on full feeds.  One of the scariest things to do with heart kiddo's are to have them dehydrated.
Even though she doesn't feel good she still has to come to work with mom.  So I think she is allowed a crazy hair day.  I hope today to increase her feed and fluid intake and get this girl on the mend.  She has her 5th birthday party on Sunday and I don't want her to miss it.

xoxo

Erin