Brown and Pink Polka Dots : NIH Day 3

Tonight things feel a little raw so if they come across that way in this post go with that mindset but overall we had a good day.

The girls feeding tubes had to be switched to water at 4am so their labs could be fasting this morning. We checked in at labs at 7:30a. Today Brent and I each took a kid. I took Lydia and he took Jilli. They each had another 10 viles drawn!

We then headed to our hospital room. Our first appointment was at 9am with neurology. The nice thing is that some of our appointments are able to happen at the side of the bed so they are done in the hospital room which makes things a lot easier! The neurologist had a student plus an additional student (not sure where he was from) came in. We went over their health history and talked about the crashes and the girls motor development. The doctor played with the girls for a while. Something everyone is mentioning is how minimally the girls reflexes are working. We met with them for a while and then they left and came back an asked a few more questions.

We had a bit of down time so we were able to go to the big playroom at the hospital which has activities and tons of things. It has guinee pigs in the room next door and there is glass between the rooms so you can look in. Our girls are not allowed by animals so they thought it was really cool to get to safely see them.

Brent ran over to the inn to pick up lunch because they had Chick Fil A catered in and we ate it in the hospital room. The social worker came in to meet us and asked us about all sorts of things. One of the Chaplins came to meet us and told us about the chapel and services they offer. He asked about our church and made sure that our church knows we are here. It was a very sweet meeting.

Then we were off to audiology with both kids. I took Lydia and Brent took Jilli for testing. They had ABR, bone hearing and listening tests done. Lydi did well for a 2yr old... she didn't love any of it but we got the info we needed. She actually fell asleep for the last 5 minutes of the ABR. The results we have back shows that Lydia's hearing is normal however it showed for Jillian that she definitely has a hearing loss. We have known this for a while however our team has argued about it a lot... today stops the arguing. She failed low tones in both ears and high tones in one. We need to meet with our ENT team back at home to find out what the next steps are because her ear tubes are currently in and working properly. Honestly I felt validated. I have taken her so for many hearing tests over the years. We have known since she was little that she struggled to hear low tones... it felt like someone saw what I had been saying for years. I wanted to cry when we got done because it felt like I was finally heard and I wasn't even the one in the room with her.

Brent and Lydia headed back to the room and Jilli and I headed for her echo. Jilli was tired at this point in the day but did well laying still. We listened to Jon Foreman on my phone and tried to just have a quiet time. I am really good at filling time and being busy... I dislike just sitting however I am trying to use the moments to just sit. When I went in with Lydia for the ABR my phone couldn't come in so I had 20min of holding a kiddo in a dark room... sometimes we just need to be still. I am far from good at that but am trying to look for those moments of still.

Jilli and I headed back to the room and our NP and two nursing students were in the room and she was already in full discussions with Brent so I was jumping in mid conversation.

She said that Jilli's sodium came back high so she was not ordering to have salt added to Jillian's formula. At the time I didn't have her sodium levels from home infront of me but I have now compared the two and her sodium is the same so we will have to figure that out tomorrow. She asked why Jillian gets salt and I said for her dysautonomia and she said that Jilli didn't have classic dysautonimia which is true however she does have othorstatic intolerance which is what the salt is used for. I think I need to contact our home team.

She then brought up a urine test that Jilli had years ago and how it was off and by looking at our records no one looked into that urine test. They would like to look into it more. I need to figure out what urine test they are talking about because the urine test we have been looking at for the past year has been followed up on a lot. I was tired at this point and probably should have written things down...

And then the sucker punches came...

She said that in looking more at our records they have not included immunology in our visit however they think that would be a good idea and would like to add that to next week. I said that would be fine. She said that they are concerned about the kids being unvaccinated. We talked about why the kids are unvaccinated and what lead to our medical team to make that choice (trust me that was not an easy choice that anyone made lightly... we gave Jillian vaccines 5 times and watched our baby struggle to breathe each time) and they said that they think that them turning blue from lack of oxygen is an ok trade off for them getting vaccines because they said that if our children contracted any of the viruses that are things there are vaccines for (especially the ones in the MMR) that our kids are not strong enough to make it though those and they would likely die.

I want to jump up and down and yell. How do I make the choice between my kids turning blue and the risk of death (especially with the current spike in the illnesses in the MMR vaccine)? I'm mad at our country (I don't talk about vaccines often... search this blog... its barely there) for deciding that hurd immunity isn't important. I'm mad at shit pretend doctors who publish crazy things about vaccines (yes I have read it all and trust me I get to hear from people randomly in public that like to ask me if my kids are sick because of vaccines and spout all sorts of stuff at us). This conversation is not one that any parent wants to have with their doctor.

So we will see immunology next week and see what they have to say. We will not do any vaccines here because we can't risk a reaction so far away from home... honestly I don't know what the next steps are here. Just a huge reminder that if you have ANY illness to please stay away from my kids... they can not afford to catch it.

We then were free to leave on pass for the night but we needed to wait for formula to be delivered. It took an hour and a half with two sleepy girls and a momma that was trying not to cry.

We came back to the inn and the chaplin was leading songs with kids in the common area and the kids wanted to join. They sang disney songs and Jilli loved it. I was trying to get our online portal for the hospital set up and headed to the room to find a code and cried. I am not a cry in the moment type of person. I called my momma and had a good cry... no one wants to hear that their babies would not be strong enough to make it through some of the very scary viruses going around. Also I have to justify the girls being unvacinated at almost every doctors appoitnment we have... it is exhausting. We have gone round and round about this with our teams at home as some of our team is very against vaccinating our kiddos with Jillian's reaction our (our ped will not vaccinate our kids anymore... she has watched what happens too many times) and other memebers of the team who were not involved in the case when all of that was going on and they don't understand it all. This is one of those areas I feel protective about. I get how important vaccines are... trust me... that was made very very clear to me today in very plain English... I also lived through the effects.

I pulled myself together and headed back out to meet Brent and the girls. Lydia was getting antsy so I took her to play. Brent and Jilli did music during the first part of dinner while I ate and then Brent ate and I took the girls to do an art project. They had a great time and that helped here to feel more normal to them. Lydia and Brent headed to the room and Jilli and I went to play Bingo! I won a prize for Lydia and Jilli won a coloring set.

We also got a few special surprises today. While we were out of the room for testing someone left Jilli a new pillowcase and valentines. Jillian's friend Caroline also mailed her a Boxcar Kids book!
Another very very cool surprise was the dinner group we met last night dropped off a bag for the girls. Inside was two zebras (the symbol of rare disease)... and tons of NASA/NIH space stuff... temporary tattoos, stickers and even a space suite patch for the mission. That was SO sweet of them!!! I am blown away by everyone's kindness!!!

Well off to bed... we have our first appointment at 7am (6am home time) tomorrow and a packed day of meetings. I am hoping it is less emotional then today. Tomorrow Brent and I also get to take off the heart monitor from the study we are a part of which makes us both happy because it really itches... they want to know how caregiving effects heart rate... I am guessing ours was a little crazy today!

We also found out today that we get to come home a couple days sooner then we thought. There was a misscommunication about our travel schedule between the people who make our appointments and the person who schedules our flights so they are looking at seeing if we can fly home next Thursday instead of Saturday. We should find out in the next couple of days... until then we will enjoy the much nicer weather here then at home... we still need to work out getting our snow taken care of at home before we get back.

Thank you all for the prayers... it was amazing today to get to brag to the social worker and chaplin about our amazing support system an how thankful we are for all of you. Thank you for the texts and facebook comments this week... we appreciate them all and are so grateful for each one! Thank you for reminding us how loved we are!