Brown and Pink Polka Dots : Busy week!

Life has been a bit busy lately!

We wore dresses every day in December.

Jilli turned 7 mid December and we had a fun time celebrating

Jilli had an unexpected hospital stay Dec. 19-20

And we had a great Christmas and new years with family.

My brother and Mikaley flew into town and we were able to have a lot of fun with them over new years.

Lydia woke up New Years day with a raging ear infection that we spent hours in the ER getting meds for (she woke up really sick and we were not sure what it was, thankfully it was just an ear infection and she is doing much better)

We started out last week with feeding tube changes for both girls.

We had a adventure day with friends on Tuesday...

And Wednesday we had our normal 5 therapies

Thursday Jilli had OT and then we had GI and met with the undiagnosed clinic.

It was a busy day with a lot discussed and talked about...

And I need a place to look back someday and remember things so here we go:

-They want to admit Jillian to the hospital sometime soon to do a bunch of testing. Yes we did ask for a testing break last summer... part of me feels like we never really got a break because Jillian ended up in either infusion or in the hospital every couple of weeks this fall... but that is not testing so we need to now proceed with testing because sometimes life doesn't care if you are rested. They want to at minimum do a swallow study, EGD, and throat motility testing. They are also going to see if pulmonology and cardiology want to add testing in too. To do the EGD Jilli will need to go into the OR and I asked if that is happening if we can have ear tubes placed at the same time since Jillian's hearing testing in December showed that she still has low and high tone hearing loss. This is going to take a lot of coordination between departments and people so I do not know yet when this will happen. ENT had also offered us to look into cleft pallet surgery to help strengthen her pallet because the low muscle tone in her pallet effects her speech however I don't feel like that step is appropriate at this time and has the risks of sleep apnia... Jillian doesn't have a cleft of her pallet she just has low muscle tone in it... it does effect her speech but not nearly enough at this point that a surgery like that is even on the table for us. I would however like them to scope her throat since that has not been done in years and years ago a spot was found in her throat that has no muscle tone and I would like to see what that spot has done as she has grown. This testing makes me very nervous as we have done this testing before and it has always caused lung problems for Jillian after and I feel like that is a huge risk.
-There is talks of redoing Jillian's disastonomia testing someday... hers in the past has shown some odd things but not definitive things... but there also are no norms for that test for "typical" kids.
-They would like Jillian to do a trial of wearing a neuro stim on her ear for 5 days. One of Jillian's closest friends is currently in a study for this however Jillian is too young. They are trying to see if our insurance will cover it because the cash price is $5,600 for 4 devices (4 weeks) so we are going to try one and see if it helps and then go from there. They said they are scheduling out a bit for the neuro stim however we asked if we can possibly do it this month while Jillian's friend Grace also has her's on and they said maybe so we will see.
-Gi talked about trying a new medication however that is going to need to be cleared with others on the team first.
-There is a bunch of testing that they would like to do in the ER during Jillian's next big crash so that the testing happens right away. The hopes of that is that we are able to catch some things before we start treating to give us better answers. That is likely going to mean a long time in the ER! But hopefully it pays off and we are able to figure out the root of what is causing these crashes.
-Jillian's body is currently headed for a crash, the early signs are all there however the flu is up 9,000% from this time last year in our area (I wish that number was a joke, it is not sadly) so as much as we want to do testing on these crashes, we also don't want Jillian spending time in the ER right now so she is headed to infusion clinic tomorrow morning to get IV fluids. This will hopefully push her next crash out for a few weeks and maybe flu numbers will be down a little by then. This will also give more time to get everything in place for all the testing that needs to be done during the next one.
-We had some discussions about what preventative things we could do to try to keep Jillian out of the hospital. One of the things on the table is scheduled infusions once a month and then we would see if that is enough and adjust from there. This also brought up a port conversation because Jillian is ending up needing vain access so frequently and sometimes it is taking hours to get an IV in. This is not a conversation that we are taking lightly and one we need to have more conversations about because there are a lot of pros and cons here.
-They brought up a bowel psychologist however honestly this is so low on our list. I did need to schedule to get back in with urology because I told them we would come back if she was not potty trained by 7.
-They brought up feeding clinic again (which we have been to before)... this feels a bit like them spinning wheels because we saw a world renowed feeding specialist this fall and she agreed that we need to keep doing what we are currently doing. It feels a little bit like they are not sure the next right steps with this part so we keep just doing the same circle over and over... I have asked our speech path to try to help here because she works with Jillian weekly and understands Jillian's low mouth muscle tone... it effects her speech and she feels that if we pushed oral feeds we would likely just end up having to pull them again... we are not doing to oral feed yo-yo thing... we have done it before... sometimes it is really frustrating that our PT, OT and speech path are not brought into conversations because they don't work for our hospital system eventhough they know my kids better then most other people involved because they see them every week and have for years.
-We are going to trial Lydia on azythromycin like Jillian once Lydia is done with her ear antibiotics to see if it helps gastric emptying.
-We are currently going to leave the girls on Ranitindine. We have seen all the recall stuff and had a conversation with our doctors. The girls are on multiple reflux meds and this is what currently works best for the girls. We will continue to reevaluate as research comes out.
-They are putting in a referral for palliative care to try to help manage Jillian's fluid needs and help us have some quality of life conversations. I feel like the quality of life conversations have all fallen on my shoulders this past year so I am hopeful that this is helpful.
-We are going to try to meet with Child Life soon to help Jilli walk though some of this stuff. There are many ways where Jilli has to walk first in a lot of this and take on most of the testing for her and her sister. Sometimes that weighs heavy on my heart so we try to support her the best that we can.

The biggest crappy news... in the tales of NIH sucks...

It looks like they have done NOTHING since we left. Like they didn't send the skin samples anywhere despite telling us all the things they were going to do with the skin biopsies (and those were hard on my kids and have left a park that they wear on their skin that reminds them on NIH), they didn't do the whole genome testing. They did crap shit. Thats why we can't get the rest of our records... because they didn't do them! I am now thinking the only reason that I heard from that one person there a few months ago is because I filled out the 6mo survey and said we were unhappy thus the contact, I don't think that if I had not filled that out that anyone would have reached out to us. I am ready to walk away from that whole thing. At this point I do not see it ever helping my kids. This all is so crazy because walking away isn't us... we have been with one hospital for 7yr, one ped for 7yr, even when things have been hard... both of the second opinions we did were because our doctors asked us to. This feels so against my character... but given the last year it seams like the right thing.
What also sucks is for almost a year now I keep hearing stories of people who have gone through this program and had issues... and we all feel scared to talk about it and like we need to be in the shadows and ashamed... this all is not ok... this all is a lot bigger then us. Does NIH do some great things... yes, do I think everyone there is evil... not at all, do I think there is an issue, big time. I am also a person who also often sees issues and looks to see how I can fix them, who I can talk to, how I can get involved... I don't think right now I can be a part of fixing this though, I think right now I need to pray that someone does, that there are changes that are made, that others are not hurt, but I have to also step away and know that right now this does not fall on me. But know if you are a family who feels in the shadows by all of this... I believe you and you are not alone.

The end of the year always brings a lot of reflecting. My parents always cook a big meal on New Years eve for dinner and we sit around the table talking about the year. Last year in December I wrote about feeling like I was in a season of waiting. Waiting feels long and hard but also hopeful like something is about to happen... 2019 didn't look like I hoped it will. 2019 felt broken, hopeless at many times, hurtful and confusing. It felt like we got to something we had waited for and it turned out to be something totally different. I thought I was prepared going into 2019 but honestly I don't know that anything could have. We fired a doctor off of our case in 2019, something we had never done before. We also added several new doctors to our team. We also entered those relationships different, it feels like we enter into new relationships with doctors a little beat up and like we are watching to see if they are going to throw more punches or if they are safe. This is not how we use to enter into new relationships with doctors... and I miss that. It is also hard to explain that to doctors who are new to the case... to tell them that we use to be different and that we want to trust them but that too many people have broken our trust but that we are trying really hard. Our walls don't mean that we don't care.
But as much as 2019 was really hard there were some really good things too! We were the family of the year for Kade's Klassic which still has our minds blown and we can't wait to help with that in 2020! We met some great new friends this year that we have been blessed to spend time with. Some amazing people have helped us with house projects this year which we are so grateful for! We went on Jillian's Make A Wish Trip to Disneyland! We were able to help multiple charities this year. We had a museum and zoo membership which provided hours of fun and learning. Jillian started 1st grade and both girls started music therapy. Some amazing people have stepped up this year to hold us up when we couldn't hold ourselves which we are beyond thankful for! We had great adventures with friends. We spent a lot of weeks of our year at RMH which has been hard but we are also SO thankful for RMH!

For Jilli's birthday Grandma and Bumpa brought her to great wolf lodge

And for the first night we were lucky to have some friends join in too and we celebrated Christmas together

GWL had wolf ears that raised money for Make A Wish!

Morning Yoga!

The dads building

Jillian loves the characters

Our annual friends Christmas picture

Getting Tubie Friends sent out before Christmas

Jilli's December hospital stay

The night before Christmas at home

Christmas the 4 of us... my shopping gold this year was the Mattel Store because they have dented packages from American Girl so American girl product is half off!!! Also I went there on black friday when the whole store was half off and was able to get Lydia some Barbie things half off... the girls don't care at all about the dented packaging

We made cookies together

Chrstimas eve new pajamas at my parents

Making food for Brent's side of the family

Christmas with Brent's side of the family

dancing with Snoopy

I learned how to braid her hair into a wreath

I laughed because this was at my grandmother's assisted living home... apparently it is not just millennials...

On the 23rd I was doing devotionals with the kids before bed and we were talking about Christmas and how it is when we celebrate Jesus' birth. Lydia decided Jesus needed a birthday cake. Thankfully my mom had picked this one up already to bring to family parties so it became Jesus' birthday cake

The girls and their dolls in Christmas eve pajamas

In my family growing up it was tradition that we opened our biggest gift on Christmas eve, normally when my Aunt Sandi and Uncle Todd were there because they would end up helping build things. The tradition continued with the girls

Lydia asked Santa for a dolly for Christmas

If you ask Jillian her favorite thing from Christmas she will tell you thing singing Butterbeans Cafe wisk lol

The girls playing dolls on Christmas morning with Lydia's new doll

new feeding tube belts!

Jillian was SO excited for the Funko Pop! We love watching Dis Unplugged which is a Disney youtube channel and over Thanksgiving they held an online auction fundraiser for Give Kids the World. Jilli and my mom bid on a few things and for Christmas Jilli was given this Funko pop Figment that they won

Jilli calls bath robes back rubs lol

Christmas at my mom's side of the family

Christmas is hard work!

It was so nice outside a few days after Christmas and there is an accessible park near my parents house so we went to play and found friends there

Jilli by her brick

My dad and I in the 3rd row of a Highlander looking at Christmas lights lol

Christmas with Seth and Mikaley

Mikaley reading to Jilli one of her new books

Lydia getting a hair cut

I got my hair cut too. I had not gotten it cut in almost a year. As I was walking out of getting my hair cut and I told Jilli it was like I had cut the last year out of my hair. That statement hit me and I quickly had to think of something else because I didn't want to start crying because the weight of that felt heavy. I loved the haircut I got in early 2019 (love the person who gave it to me even more!) but cutting 2019 out and starting fresh felt so needed... even if it was a very impulsive haircut

Oh Lydia!

Jillian asked for the American Girl Mars space station for Christmas but Santa does not have $350! So she got a Lego space piece and was very excited to build it with uncle Seth

Mikaley let the girls help her do her make up!

We let Jillian watch her first Star Wars movie

Early morning New Years ER trip

The girls doing yoga with Mikaley

Lydia found a new backpack

Seth and Mikaley have a restaurant they love to go to when they come home and Seth's best friend joined us, it was a fun night of laughing and yummy food

We needed to bring Seth and Mikaley into the city to drop them off at their airport so we stopped in the city on the way!

Joss was a BIG deal to a little girl with a hearing loss! She was so excited to look at all of the Joss stuff when we went to the AG store... Joss is def on her wish list... a doll like her!

Lydia was sad in the bitty Baby room because she wanted to play with all of the babies that were behind glass because she said they wanted to play with her. Thankfully they had this stroller out that she could push around of a bit. She loves babies SO much!

our museum membership has reciprocal membership at Science and industry so we stopped there for a little bit and Jilli look at every little section of the doll house

Waiting for tube change

Grace taught them how to make slime

Wed went to the Smiley barn to see all of their Playmobil

We made cookies with friends

And have watched a lot of movies this week trying to stay away from germs

getting a 3yr old to wear a mask is not easy lol

We have played TONS of games this week too

after our appointments the other day we cuddled up with Jilli and talked about the appointments with her. It is her body and she is old enough to understand things now