Monday, February 27, 2017

Sunday Excitement...

We were very excited that tiny P's team agreed last week that our girl needs a break...a break from getting blood work done a couple times a week, and a break from the hospital. She handles it so well, but we know it has to wear on her, and she needed a break.
We enjoyed our first hospital free week!

Then, yesterday morning our baby got up, and brought us her tube... which had come out of her stomach sometime in the early morning!

We called the hospital while we packed, and then we headed down to Children's...


We were hoping our girl wouldn't need surgery to re-place her tube...and they found that she had a small opening, which they were able to dilate over the course of the afternoon, and make her stoma big enough again to fit her regular sized tube back in.


Her stomach will be tender for a while, but she has her regular g-tube back in!


This is not an easy or pain free process, and tiny P said that it felt like they were cutting her stomach open, and if they were going to cut her open they should put her to sleep... poor thing.


We are happy that our baby didn't need surgery, and we are thankful that she was able to go home yesterday! 


We are very, VERY thankful for her g-tube, which allows her to get some pretty yucky meds, and stay hydrated the way she needs to!

And now? We are on a break again. Ha.


Sunday, February 26, 2017

Sunday...

This little heart of mine, I'm always gonna let it shine...






Friday, February 24, 2017

Friday Phone Dump...

Elevating her finger...because blood thinners keep the blood coming long after you are done with labs.


So fancy...


Just hanging out, playing some games...


This girl, she is so patient. Even though this ultrasound was very thorough (almost two hours), she laid like this, and never complained.


Taking a little break while they review her pictures.


When you have a month's worth of allowance saved up, you really need your mommy to take you shopping at Target...



We get to the hospital at 7:30 in the morning on blood work days. We color, we "see our friends" (the lab techs, haha), and she gets her blood drawn at 8 am. When we are getting her immunosuppressant levels checked, her blood has to be drawn exactly one hour before her next dose, which is at 9 am. We pack her meds and bring them along so that she can get her 9am dose on time, and then we either head up to the next floor, to clinic, or we come home!


Precious little thing. Yes, that bottle is still her go-to for comfort...


Waiting for her blood pressure...


So happy to have baby J along for morning bloodwork...


That upside down hat... haha!


Morning hair is the best hair.


Donut happiness.


Sometimes we have spa days...


I don't know whether to be sad or happy that she doesn't need me to paint her nails anymore...


On spa days, everybody's nails get done... but no one is happier than baby J. HA!


Sunday, February 19, 2017

Sunday...

Do not wait for someone else to come and speak for you. It's you who can change the world. ~ Malala Yousafzai



Tuesday, February 14, 2017

Love...

Love is me...and love is you. So when you smile, I smile too. 
When you're around, the skies are blue. It's like being happy! Times two!
Love is sweet...and love is GRAND!
Sometimes love is just holding hands. It's a feeling inside. It's a smile in your heart.
It keeps us together when we're apart.
Love is fun! It's feeling free!
Love lets you be who you want to be.


Love will catch you when you fall.
Love! It's the greatest gift of all.
It's just us, without a care.
It's what we give...and the times we share.
It wipes away the tears...sends our troubles along.
Love is the place where you ALWAYS belong.


And we've got love-me and you. 
We're sticking together. We'll see it through... 
And wherever we go love will always be, because...
Love is you, and me. 
~Monica Sheehan