A week at Ronald McDoanld House

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I feel like we are landing here for a little bit... for how long I don't know, Jilli's sleeping heart rate has been in the 90's for several day which is high for her... she held her tummy all through OT and keeps saying it just doesn't feel well but can't pinpoint an exact spot... she has also taken a few naps and is asking to rest a lot which is normally a sign she is about to crash but we are trying hard to keep chugging away at life because it a balance, sitting too much isn't good for her body (she already has muscle atrophy as a starting place daily) and if a crash is coming its best to get some living of life in first.

We just got home from a week long stay at rmh that was very busy. My brain is a bit scattered so this will likely jump around some.

• Last wednesday we had GI. I LOVE our GI doctor. She listens really well and makes sure I get to ask all the questions I want. We talk about life and having a good relationship makes me trust her even more and it makes it so when I say there is an issue she understands that it takes a lot for me to be concerned about something (heck I know that the likelihood of Jilli ending up in the hospital soon is very high... it is what it is, I'm not stressed about it, its part of life). Jilli picked a sand art project from the magic room at RMH and she made one of the art projects for our GI doctor because she loves her so much.
• Lydia is getting an EGD done in June. We need to wait a few weeks because of the pneumonia before they can do anesthesia so we got it scheduled once that is safer. We need to figure out why she bloats so badly and why she keeps having small GI bleeds. 
• Jilli had a spine MRI done on Tuesday to rule out anything in that area causing her to not feel when she pees or poops. That is really stumping people. It came back clear. It did show poop in there which is strange because she had just pooped before and has started pooping in her sleep again which is odd for her. 
• We started Lydia on L-Carnitine and will start her on b complex soon. Those are vitamins in the mito cocktail.
• While we were in GI genetics paged our GI doctor... insurance approved paying for Lydia's exome testing!!!!! I went over the genetics and signed the paperwork. We also got to see of favorite nurse while we were over there. She use to be our GI nurse but now works in genetics however she will always hold a special place in our journey. We had not seen her in a long time so it was great to see her... it was good for my heart. 
• I called the did the financial counseling you have to do for genetic testing... its always fun listening to them say that if for some reason insurance decides not to pay after the fact that we will be on the line for $15,000... 

• I also got a call from Shriners... they are getting Jilli a trike!!! She is so excited! Special Needs trikes are over $3,000 so we are very thankful for the opportunity for Shriners to buy her a trike. We just have to sign some paperwork and send it back to them and then they will order it so it should be here soon. 
• Jilli and Lydia both had feeding tube changes last Friday and changes went great... until we left and Brent told me that the PA told him they are stopping stocking the AMT button. This is the fight that never seems to end (just search AMT in the search on this blog and you will see the amount of times we have gone around about this). I don't know if it was more convenient for them to tell Brent or if I'm scary because they know I will push back on this.I have never been mean or nasty or yelled however I have been firm and I have gone above the people who tell me no about this until I get a yes. This is what is best for my kids. I have tons of reasons why... this isn't a Pepsi vs Coke... this is a could have real impact choices and I don't find that brand change reasons for them to be convincing to me. I have already contacted GI about this and we are going to work together to come up with a solution. For now we have the tubes in the girls that they need but their tubes get changed every 3mo so the clock is ticking. This also isn't just about us... there are other families this impacts too so I will take up this battle. 

On the NIH update... the post office lost ALL of my children's medical records. Boxes of medical records. I have spent hours working on this and we now have filed a complaint with the post office. CHW outsources their large medical record printing to a place in CA and they mailed out the records April 5 (two different boxes) and I mailed out all of the stuff from our primary, therapy and imaging on the 19th and nothing has arrived yet. The tracking for the package I sent says it is sitting in a distribution center. This is SO frustrating! We can't start the next step in the process until NIH gets our records! Ugh!

In a more exciting update... I accepted an opportunity last week as a parent advisor for our hospital for the floor our girls stay on while they are in the hospital. I found out about the opportunity a few weeks ago and have been going through the process of applying, interviewing and training for the position. Its a level of commitment I can handle with just 10 meetings a year but there is opportunity for growth and new things. I am really excited to be able to give back to a place that has helped us so much and to help work together to help other families. There has been a lot of things to do for it but it is worth it (even worth 2 TB tests in 2 weeks because they require that) and I am really excited to start in a few weeks. I am also really thankful for my hubby and family who have encouraged me to take this leap and are helping me with logistics.

While we were ate RMH we also got to do many fun things. Caroline and her family came down last Tuesday for a dino class put on by the public museum and we celebrated Caroline's birthday. Jilli also got to do multiple art and music therapies... even a music group at the hospital. The garden at RMH has been started for the year and both girls got to put on their gardening gloves and help plant the first seeds of the year. I got to go out for a girls night with my friends Holly and Stacy which was SO nice. I also got to have cheesecake with my friend Shanice... Jilli has become friends with her daughter Kiera at rmh so we hung out with them while we were there. Monday morning my friend Jaime came up and we loaded all 4 kids into her van and went to the zoo! We had an amazing time walking the zoo and talking about life. Our kids enjoy being together (Emerson is in the short list of Lydia's favorite people) and it was so nice walking around on a beautiful day.

Last Sunday Jillian also got to take part in a wheelchair fashion show! Caroline was in it last year and told us about it and Jilli decided to join this year. They had 40 people who use wheelchair participate and the money raised from the event helps paralysis research. Jilli enjoyed getting her hair and make up done and hanging out with her best friend. She also really loved seeing so many other people who use wheelchairs too. It was a really cool event. Jilli was very tired for most of it and rested on my arm most of the time but she enjoyed rolling the runway.The only tricky thing of the day was the service dogs some of the others had so we had to be really careful where Jilli could go when so logistics were very tricky!

Also everything is up and going on the website for the Children's run/walk this year. Our goal is $3,000 and 30 people. I'll post more about it coming up but to join the team or donate CLICK HERE! We really want to support programs like the music and art therapies at Childrens and we need your help! 

Well back to life... there is a lot of unpacking that needs to happen!

My brother came with to help when we went down to pick up the girls braces. I am so thankful for all of his help! He watched Lydi too while Jilli and I were in the MRI

Jilli's new braces

Lydia and Emerson at church for Oliver's baby blessing

Jaime and Jason have cats so the girls can't go in their house so thankfully it was a really nice day out after Oliver's dedication so the kids could play outside

My girls have several uncles... not all of them are by blood... I am so thankful for Jason and the time he invests in my kids. My girls need more then just Brent as good male influences in their lives and I am so thankful for Jason for being one of those to them. All of the girls stuff doesn't scare him, he just goes along with it all and I am so thankful.

This picture is many prayers and many tears in the making and I am so thankful for the amazing woman next to me who we have done life together since our sophomore year of college... life has had many changes since our dorm days but I am so thankful to have her as a listening ear and a person to wrestle faith with. I am thankful for all four of those kids and the answer to prayer that they each are. I can't help but smile and get a little misty eyed when I look at this picture

Jilli trying on her fashion show clothes at the Purple Giraffe. They were amazing to  work with and if you are looking for a special gift and are in that area go check them out!

Jilli and Brent made the banana piano from Project MC^2 (yup we forgot about those bananas before we left for rmh...)

Lydia picked a baby doll from the magic room. She LOVES babies!

She is getting to be so big!

I went to a meeting and came back to this!

This is another person of amazing influence on my kids... have you ever been near a person and just felt loved just because they were in the room... that is how Ann makes you feel... she is one amazing person!

Ken helping Jilli plant

Do you see that people... in the middle!!! This is a pic of Cafe West at the hospital... there is grape soda again!!! The hospital stopped selling grape soda a while back (something about being healthy...) but I LOVE grape soda in the hospital! Don't really care for it anywhere else but I like it there and was very happy to see they sell it again

Jilli drew this on the back of her school work... its a picture of our family

Waiting for IR

balloons after IR

Lydia carried her tube parts through the hospital like this lol

Lydia enjoyed all the clapping

Another one of Lydia's favorite people... Laura

These three adults... I can't even explain to you how much it means to me that they came to the fashion show! These three are some of the managers at RMH and they came on their day off to support the girls.

Jilli on the runway

that bear almost ate the goose!

worn out Jilli

She wanted to sing Jon Foreman songs in music therapy

She rocked her MRI unsedated! She asked for me to come in too so I got to wear the fun paper gown but for her I'll wear it if it makes her feel calm. She watched Dora and laid still the whole time!

Lydia calls her colors by the names of the Sesame Street characters (red=elmo, yellow=big bird, ect)

They were trying to be cute to get our of going to bed lol!

When Jilli was little I use to make monthly picture slideshows... well that hasent happened for Lydia but she loves watching Jilli's so I decided to make her one the other day. Click HERE to watch it