Brown and Pink Polka Dots : Taking a pause

This week has been a rough one emotionally... from waiting for a genetics appointment for a year and them last minute canceling to our big meeting... this week was heavy in many ways.

First genetics canceled... they said they had nothing to talk to us about... I said I had things to talk to them about though... they said they want us to be seen in the new outpatient clinic our hospital just started for medically complex undiagnosed kids. This clinic was born out of these meetings called Nelson's meetings which we had over a year ago where many of your doctors plus lots of other doctors in the hospital sit around a table and talk about your case but you are not there. This clinic is now to follow up after those meetings. I don't know a ton about what the goals of this clinic are, but genetics would like us to be in this clinic... but they didn't get us set up with this clinic before they called me which really made me mad! I asked about the research study and they said that yes we are enrolled however they would not/could not tell me if a researcher has picked up our case or not! Genetics has just been a frustrating specialty for us for 6yr and sadly that is continuing.

The other big thing this week was our big meeting. A lot was talked about there, some of it I am ready to talk about here, and others of it I am not. The big take away is that we are currently putting a pause on all medical testing that is not immediately needed. Our kids have had medical testing almost their entire lives. Some of this testing has been very invasive. Some of it has had some rough side effects. Some of it, like NIH was very challenging mentally for our kids. While medical testing has been a needed part of our lives to try to figure out the best plans for our kids, it doesn't come without risks and costs. If we are doing medical testing that means we are not doing something else. Thats just how life works. We are all tired and weary from medical testing... we have given it our all of 6yr! We are at a point where we have plans for many of the things going on that are working to some degree so we would like to take a breath here for a little bit.
I often joke that our lives are like whack a mole... that we treat symptoms as they pop up. Currently though we are at a point where we have tools to pop most of those moles into an ok place... it doesn't mean that we are not daily playing the game and that sometimes things surprise us, but it means we have a toolbox that we are able to use to help a lot of different things. And we know when we need to get help from the hospital for the ones we can not do ourselves.
A friend asked me yesterday what I wanted this pause to look like and I said that I wanted it to look like a time where my kids can do kids things and make gains in kids skills.
When we told Jilli this she was upset because she thought that meant that we wouldn't be staying at rmh anymore but we explained to her that we still will have all of our normal appointments just not testing that then she was really happy.
This isn't a pause forever but our goal is for the rest of this year. That will make our year look a bit different and that feels a little weird right now.
The only thing we are testing right now is that the first week of September we are giving Lydia the MMR vaccine. Jillian's body really struggles with vaccines so her ped stopped them several years ago. Because of Jilli's struggle with vaccines, Lydia has not had any... however because of the current resurgence of measles and mumps we are having to have some hard conversations about this and have agreed to give Lydia the MMR to see what happens. We are meeting with an allergist and doing this in an allergists office and then will be staying at rmh for a while after as her body makes immunity.

There are still some long term things that we have different views on that we are still going to have to work trough which feels hard. There are still some things that we have fundamentally different views on and that feels challenging but one step at a time. We have a short term plan though.

I sent a message to our GI doctor and she agreed to the pause in testing as well.

Thursday night we came home from RMH after a week and a half there. Yesterday we took a day to care for us. In the morning the kids and I just chilled. The weight of medical appointments hit differently once we get home. It hits my body at home. I often feel horrible the day we get home from rmh after emotionally challenging stays because I live in the tension of my body and mind needing to put the pieces back together and wanting to be productive. Often on this first day home I have little grace with myself because I want to get everything unpacked and the house clean but my body is very slow and tired. I often beat myself up that first day home. But I am trying to learn to have grace with myself. To find small things that I can accomplish while still giving my body and mind time to process. In the midst of being at the hospital your body is good at making adrenaline to ride you through it all... once you are home the adrenaline lives and you have to process everything.
Last night Brent and I also went out with Jaime and Jason. When we were in college we would all go out together and we have so many memories of really fun nights but life changes once you have kids and nights out are a lot harder. For Christmas Jaime and Jason gave us the gift of a night out the 4 of us like we use to. Our year has been crazy with medical testing and sickness (we have only spent about half of the nights this year in our own beds...) so we have kept having to put off our double date night... but we put last night on the calendar over a month ago and were very protective of trying to keep it. Jaime turned 30 in June and I turn 30 next week so we went out the 4 of us for Christmas/birthdays! It was a really fun and a great night out. I actually drank a martini! Brent often jokes that I am a prohibitionist... its super rare that I drink... in fact Jason joked that he is not sure if in the about 10 years that I have known him if he ever remembers me drinking before... but we went to a fun restaurant that had fun drinks so I tried an espresso martini... liked the front half taste of coffee, I didn't love the back end taste of alcohol. I think I would have done better with finishing my drink though if it didn't take an hour and a half for our food to come out because I hit a point after a few sips since I so rarely drink that I really felt the alcohol and was really really hungry. But it was a fun night and something we will talk about for a long time... especially the lack of lighting in the guys bathroom that both boys kept talking about lol. I am so thankful for the night to step away and recharge with friends who have been with us through it all! I am thankful for the gift of time together that our friends so thoughtfully gave us!

So for now we are home for a bit. That means our focus is shifting to house projects. Brent is working on mudding and taking drywall today in the bathroom. I am going to work on unpacking. There is a lot to be done here with the goal of getting the house on the market as soon as we can get projects done so our focus is going to be on that for a while. If you could pray that projects can get done quickly, efficiently, and cost effectively we would really appreciate it. If you could pray that God lines up a smooth situation for us to sell our house and buy a new one we would be very thankful. And if you are good at helping with projects and are interested in helping, we hopefully will know soon when we can do a couple of project days, we needed to get through those appointments first before we could think forward, but now our August is pretty open so we are really hoping to get a lot done in that month before we do the MMR in September so if you love helping with fixing two decks, yard work, taking care of a tree, putting gutters up, finishing a bathroom, and sorting though stuff to donate/pack... let us know. We know there is no way we are going to be able to afford a one story house that is as big as our split level house which means we need to downsize which we have started working on but thats going to be a process and something that I really am not good at!

There is a part of us for a long time that felt like taking a medical pause like this would be selling our kids short and not doing everything we needed to do for them... but we have take a lot of time to evaluate this... this situation didn't come lightly and in no way is this a rash decision... but a choice that has had many tears shed over and conversations had and what we think is best right now for our kids holistically. For 6yr we would do just about any test they asked us to do... including many that showed us exactly what we already knew and others that ended up making our kids sick. It is not that we regret the testing we have done over the last 6yr, we were taking the steps we thought was best at those moments... which is also what we are doing now even though the action with that looks different. We are just trying to take the right next step for our kids.

Brent and I did something fun to play a joke on the kids... we went with one of the managers and took pictures like we were the ones going the the magic room this trip instead of the kids. We had a lot of fun and it was really silly

After we showed the kids the pictures we took the kids

With the help of several friends we served dinner at RMH on the 30th! Thank you to everyone who helped make the meal or provide food. The night went really well!!!

The board out in the garden

Superhero ready for cardiology

Jilli was given this doll by a child life specialist back in April and Macy the doll has gone with us to a lot of things over the last few months to help Jilli through stuff. Jilli and I are going to an American Girl Doll Sale next week with the goal to buy a couple of American Girl dolls at a discount to gift to the child life specialists at our hospital to give to other kids to help them like the one they gave Jilli

Coloring golf balls for the RMH golf outing

This outfit is what Jilli picked out of the magic room and she had an outfit to match her doll!

VR Jilli

Waiting for tube changes in her new Gracie's Gown

balloon after tube change

Kids from Wisconsin came to sing at the house

and make music with the kids

The house had free tickets to Summerfest and Switchfoot happened to be playing... so I took a bus down and saw Switchfoot... I feel really guilty that I have had two nights away from the kids lately as I suck at feeling ok with taking care of me... but man was this night so filling

Lydia's body has still been weird lately...

Watching the fireworks from the parking garage at RMH

It was the perfect spot... you could see about 6 different shows but none of them were super close so it was not loud at all

We tried... and failed to make maple baccon cupakes for the staff

Man these two people love and support us so much and I am SO grateful for them!!!

We needed to stop at the mall to pick something up and Lydia kept pretending to sleep on the floor with things...

This was soooo cute... but Hannah Anderson is way to pricey

My friend Stacy sent me a coloring book!

Hip Hop class

I painted Jilli's nails one night

Jilli noticed the Kohl's Cares plaque on the bench so we talked about how Kohls supports so many places we love! Thank you Kohl's!!!

When we are living in one room medial things go in interesting places lol

I don't think that is where you should be sitting

RMH had a luau night! The board and staff made a fun themed dinner and then they played Lilo and Stich outside in the garden! Our friends came over and it was a great night!!! I am so thankful for the things like this that RMH does to help families!