Kidney Infection

So we got a call from Raygen's doctor and her urine sample we sent in on Tuesday showed "something" growing so they are starting her on a antibiotic and we also sent in another sample today.  I really hope my girls starts to feel better soon.  Hopefully this is the answer.  Keep your fingers crossed I very much miss my happy baby.

She still has a fever????

Raygen is having times where she is playing and I have even heard her laughing at Elmo today, but she is still running a temp and she just looks like she isn't feeling too great yet.  I am still scared.  We are waiting to hear from the doc on what her pee sample showed yesterday.  We are still watching her o2 and heart rate.  I just have no idea whats going on with her.

On the mend...Knock on wood...

Thank you so much for all your prayers and positive thoughts sent our way the last few days.  They have been scary.  Thankfully I think Raygen is on the mend today.  We did get a pee sample sent into the doctor yesterday and should have the results tomorrow on whether our girl has a kidney infection.  She hasn't ran a temp today and has FINALLY let me put her down for time throughout the day.  I have done nothing but walk the hallway of my very small house for hours the last three days so being able to set her down for a moment has been a blessing, my back thanks Raygen.  We are still giving her Tyenol every four hours with her food bolus because even though she is feeling better and playing we can still tell she isn't totally herself.  I'm sorry it's taken me so long to post this update I guess I have been waiting to see if she was truly doing better before I post I didn't want to jink ourself.  I hope by this weekend Raygen is back to her "normal" then I can take a few breaths.

Pray please

I would be lying if I said most days I wouldn't love to roll in a ball and cry.  Life is stressful with a medically ill child.  There is a lot of pressure to make sure you KNOW your baby so you can catch the 1st change because it could be a sign of something wrong.  Something as little as the common cold could be the first sign of heart failure, what I think could be teething could be heart failure, a temp could be heart failure.  As Raygen's mom I weigh my decisions carefully.  I know taking her to the hospital is so scary for her and before I put her through all the touching, looking, and poking I better be sure that I feel something is wrong.  Getting these heart babies too upset could be a long road and you never know where it could end.
It all started Thursday night when Raygen didn't sleep well.  Friday she seemed fine, but she didn't sleep well that night either.  Friday we also changed her feed a little so I thought maybe the changes we made could have been the reason she was so fussy Friday.  We increased her bolus, added prune juice and calorie enhancer since she lost some weight.  Saturday, she was very tired, running a low temp and just wasnt herself.  Same with Sunday.  Today Monday she is still the same.  Tired, fussy, and running a low temp.  We are slowing down her feed giving her smaller bolus at a time and giving her Tyenol.  I'm not sure what is going on with our girl, but I would be lieing if I said I wasnt scared.  Please pray for her and I'll post more when I can.  Right now we are calling and getting her doctors thoughts and will go from there on what our next steps should be.

Sewing for Raygen

Raygen playing with the cupboard doors and her favorite tractor at work.  We have a family tradition that all our kids love John Deere, this is proof Raygen does.

Thursday night my wonderful Grandma and Mom started working on putting pockets on all Raygen's shirts for her g-tube.  We came up with the idea to put a pocket on the front of her shirts so we had easy access to her tube, but now that she is a mover we can secure the tube in her pocket when we are not using it so it will be safe for her to scoot around.

I love both these women dearly.  They worked till 8pm last night sewing away.  They are teaching me also, so I can make Raygen shirts and also make our medical alert car seat bands.  

Look at how great the shirts turned out...

The pockets work so good.  Raygen's tube is hidden when we don't need to feed her so it prevents her from playing with it (and pumping herself full of air when she gets it open) and it prevents her from accidentally pulling it out when she is rolling or scooting around the house.  Another bonus is that it hides it from everyone so she isn't going out and about with a tube hanging out of her tummy.  You would never know she had a g-tube.

Standing with Daddy while we sewed.

Another great thing coming out of all our projects is that Zoie has found a love of sewing.  She is so crafty and this is such a great thing for her.  She gets to learn how to sew and also spend some good time with her grandma's.

I love you Grandma Bev!!

Raygen wearing one of her shirts.  See, where is her g-tube???

I am so excited making all these great things for Raygen.  She just opens so many doors for us.  I love spending so much time learning from my Grandma and Mom and hearing all their stories.  I love learning how to sew and making my daughters life a little easier.  

May 30th, my grandmothers quilting club is spending all day making our Medical Alert Car Seat bands and I'm so excited.  I can't wait to start sending them to kids in need.  I just know that these could safe a life someday and I am thankful to Raygen that she inspires so many people to help and do great things.  I can't thank my mom and grandma enough for helping me make all my projects work.  I am so grateful to the quilting club for helping.

I hope everyone has a great holiday weekend.  Tomorrow I get a mommy day and get to go have my hair done.  I'm so excited.  Sunday I have to work and Monday is FAMILY Day!!! 

Hanging out at Papa's and Grams

So Raygen did not care one bit that mom left her for a couple of hours to go out to dinner on Sunday with Dad.  I think she had a pretty good time with Papa and Grams. 

She got to watch Elmo and put her feet in the hot tub for the first time and she loved it. 

We can't let Raygen in the hot tub due to her having her g-tube and plus I think it may be too hot, but we can at least let her splash around in it. 

 Zoie loves going to my parents house.  She is always outside with the dogs and she also got in the hot tub and she even tried out their pool.  Zoie is the first one in it this year and it was cold she said, lol!

Monday was my sister's birthday so we had a party for her at my parents on Sunday.  I made her a lemon cake and we had a great dinner, thanks to my mom. 

We are all so busy so we don't get to get together all that often, but it is alot of fun when we can.  I made everyone sing "Happy Birthday" to her and I think it was the first time we sung to her in years, lol! 

Great weekend!  It went by way too fast.

June 22, 2013--Join Us.

 

So if you have read my blog you know I am a huge supporter of our local Discovery Children's Museum.  The one we have now is small, but everyone hopes that it will continue to gather supporters and it can move into a bigger, better building with more room for more exhibits.  So if your local and live in the Lewis County area, please join us on June22nd to support our museum.  Your $20.00 donation (or more) will help so much. 

We will be attending and handing out Raygen bracelets and hopefully some medical alert bands for car seats (were working on them.)

Please email me if you would like further information or would like to walk or run with us.

erinmarielyons@gmail.com

 

Big News:  This weekend my husband and I are going on our first date night in 2 years.  We are letting my parents take care of the girls so we can go out for dinner.  This is a huge deal for me, lol!  I trust my mom 100% and know my kids especially Raygen are in good hands.  Life, knock on wood, is starting to get back to a "normal" life.  I'm so excited and so happy that my family is doing so well.  My girls especially deserve it.

Raygen's 1st pair of shoes & Happy Mother's Day!!

So Mother's Day was great.  It turned out to be nice outside even after all the weather reports thought a huge rain storm.  We decided to take Zoie to the batting cages and I think she had a good time.

Even my husband enjoyed himself.

I don't think Raygen cared either way.  She was just happy to  be outside.

Zoie was really getting the hang of it at the end.  I think we may be making a few more trips to the batting cages for practice.  It was a lot of fun.

 

After PT last week, Billy (our new PT) decided I needed to start introducing Raygen to shoes so after the batting cages we hit Target and Kohls and found some good starter shoes.  This is the first time this girl has ever won shoes, crazy, huh?  She is two, lol!  We started with infant shoes, lol!  She is wearing 6 to 9months.  I have been putting them on her a few times a day and she seems to be adjusting.  She hates having anything on her feet since she does so much with them.  I know this is the first step toward putting braces on her feet, so I think we will have a very upset girl, but so far she seems to tolerate them okay.  We also had to buy bracelets to get her used to having something on her right arm.  Billy also wants to put a brace on her right hand to keep it open and not fisted all the time.  We go again to PT tomorrow so I wonder what Billy will think of our progress? 

Hope everyone had a Happy Mother's Day!  We ended Sunday with a nice dinner at my parents with my sister and her family.  My mom's dogs did find a porcupine so my mom ended her night at the vet's office, but overall it was a great day!

Spreading CHD Awareness Projects

So I know this picture isn't the best, I will have to get another one.  But we got these great bracelets made to spread awareness.  They say "Spreading CHD awareness 1 little heart at a time." with Raygen's sweet picture on them.  We also have another one made that says "Supporting our 1 in 100."  I found them online at bandabout.  I love them.  I love how great they look in person and how you can clearly see a face to support CHD.  All the money raised is going into making our next project.  The Medical information car seat badges.  If you would like to purchase a bracelet or help us sell them please email me at erinmarielyons@gmail.com 

 This is just a sample of what were making.  We are making Medical Information bands that will velcro around your seat belt or the seat belt of your child in their car seat.  In case of an emergency and were not able to let the medical staff know about our child's CHD these bands have a medical safety sheet inside and we are able to write down all their medical info so hopefully they can be treated properly.  My mom, grandma, and myself are starting them but I have a feeling a lot more will be helping us soon.  I would love to donate some to NW Children's Heart Care, Seattle Childrens, and our local pediatricians office and Mended Little Hearts of course.  My goal is 100 at first and I hope to go up from there.  We will donate a medical safety band and a Raygen bracelet.  Hopefully this will help spread CHD awareness and safe a child or an adult.  We are going to make many different bands with extra fabric so we can make them for a girl or boy.  Let me know your thoughts???  Please if you would like one, email me.  I would be soooo happy to mail you one.

And lastly we are working with a wonderful man at our local Discovery Children's Museum, Allyn Roe, and he is creating a light brite wall for the kids in honor of Raygen.  Here are some pictures.  Man, I need to take better pictures!

So the light bright is in the middle and then there will be heart shaped cubbies on both sides to hold the light sticks.  It will be named after Raygen and have a photo collage and her story next to it. 

 

I had to share pictures of my sweet girl who inspires so many people to do so many things, including myself. 

Hope everyone has a wonderful Mother's Day!