Fundraiser

Each year the Feeding Tube Awareness Foundation sets a Feeding Tube Awareness Week to bring awareness to why people have feeding tubes. One of the big misconceptions with feeding tubes is that they are just for end of life care, which is not true.

Each year to celebrate this awareness week we partner with a local organization that helps families with children with feeding tubes. In previous years we have done things like collect baby dolls and toiletries for rmh  and collect fun bandaids for the hospital.

We are SO excited to introduce to you the 2020 fundraiser!!!

This year we will be collecting two things for the child life department at the hospital.

1. We are collecting Feeding Friends. This is the tape that we use to hold the girl's oxygen on their face that has fun printed pictures on it. This tape is much kinder to skin then most tapes and the fun pictures makes it funner to have a medical device on your face. These can be used for a lot of medical devices. Currently there are only a couple of child life specialists who have some Feeding Friends so not all kids who want some can use them in the hospital. These can make a hospital stay more enjoyable. They are $19 for a roll of 100! Thats a big bang for your buck! They can ONLY be bought on one website.
https://www.kidshopechest.com/feeding-friends


2. Buzzy! Buzzy is used to help distract children during needle pokes. Jillian uses Buzzy every time she has a lab draw or needs an IV... or at least when one are available. Not every child life specialist has a Buzzy so for Jillian's last IV she was not able to use one. Buzzy is helpful enough for her that she self advocates for it. And Lydia loves to hold Buzzy on Jillian for pokes. It can also be used for other invasive and painful procedures. The child life team would love more Buzzys so that every child life specialist has one to use. Buzzy is able to be cleaned and reused over and over so one Buzzy helps a lot of children. The healthcare version of Buzzy is around $100. There are a few different places to buy a healthcare quality Buzzy:
https://buzzyhelps.com/products/buzzy%C2%AE-mini-healthcare?variant=7229702602795&fbclid=IwAR3TIEiqRL-MwATqinzOvSELyJ2UUpYJY52PfCovHYLbSnicOf56C1LIV8M 
and
https://www.amazon.com/dp/B01JMBDGSU/ref=sspa_dk_detail_5?psc=1&pd_rd_i=B01JMBDGSU&pd_rd_w=7RadN&pf_rd_p=45a72588-80f7-4414-9851-786f6c16d42b&pd_rd_wg=BXtyP&pf_rd_r=HPFXBWBJRNQ9PSF73RYJ&pd_rd_r=6c5be75f-6261-45b0-8eee-29dbb44e3487&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUExQkozUk40MjIzMlo3JmVuY3J5cHRlZElkPUEwOTUwMDAwMzgyWUIyU0lITjg5UiZlbmNyeXB0ZWRBZElkPUEwNTgxOTQzM0M4UENTSE1IRUlYMyZ3aWRnZXROYW1lPXNwX2RldGFpbCZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU%3D&fbclid=IwAR18s99VgeeDu-andFM9DRDXY43hBTrToNTad9h7VoKy0rNWtFnHS86J6fs


Both of these things are very important to our family on our medical journey and we want to make them more widely available at our hospital so that more families can be helped by them too. Thank you to everyone who joins with us for this because we alone can not make a big impact for a fundraiser like this, but together we can help a lot of kids... will you join us?

We are collecting these until February 14th

Lydia with a fish Feeding Friend

Stories

The last few weeks have been busy between a lot of doctors appointments, phone calls, mychart messages... there is a lot of conversations going on about a lot of things medically for the girls. We are trying to make the "right" choices in some areas and sometimes that is hard to know what those choices are.

Today we had a down day. Productive me always wants more checks off of the to do list... practical me knew we have been running at more then full speed for weeks and this week will be no different. We needed to refill today and get a few things done. We took down the Christmas tree and I worked on cleaning some things up, Brent washed all of the medical supplies. We made Mickey waffles in our new waffle maker from Christmas and a friend dropped off some very yummy homemade chili for dinner (thank you!).

Jillian has always loved board games, to the point her 3rd birthday was a board game party. Last week at RMH we spent a lot of time playing games with friends. We are trying to lay low in public right now to avoid germs so it was a way to have fun and try to avoid germs. Lydia has never been very interested in games, she has joined a couple of times but it is pretty rare. Last night I got out Sofia Surprise Slides and Jilli, Lydia and I played together and Lydia loved it! We played as a whole family today and Lydia lost causing the need for a lesson about being a good sport and not throwing the game board pieces. She is a fiery one! We also played a Daniel Tiger board game together. Brent, Jilli and I played a new game to us called Trellis (we found it on clearance at Target half off) and we really enjoyed it and are looking forward to playing it with our RMH friends. Lydia discovered our Bear in the Big Blue House DVDs yesterday and has wanted to watch them all. She loved when Bear "smells" her although she needs a bath tonight so if Bear smelled her in real life right now he might have something else to say. Jillian has been busy building her Playmobil and Lego sets from Christmas. She is a builder! My grandparents got her the Playmobil pharmacy yesterday that she loved playing with since we frequent our pharmacy. Its been a great calm day away from the stress of medical choices.

Although we also have seen a few people on our medical team really pull together for us and try hard to help us through the last few weeks... there were tears in my eyes last night a message came through that said we were in this together and ended with #teamupton.

Thursday we got some results from some OT testing in hand strength that were like a punch in the gut but also reminded us that we are not crazy. The one score should be 27... her score is a 5... and that is after months of OT. That says there really is something muscular going on. Its not like she doesn't use her hands, she uses them all day and we do our best to help build her hand strength (Brent sat with her for an hour this morning working on Legos) but this is the reality even with all the interventions. This is a reminder when our team gets so laser focused on a few symptoms (or medical interventions) that there is something global going on here and we cant just look at one or two symptoms and that despite a lot of hard work from a lot of people things are the way they are... that is reality. NIH's "fix" of just get her orally eating like a "normal" person isn't going to fix this... so we need to look at this for what it is... a piece of the puzzle... and while we don't know all of the piece or what the name of the puzzle is, we need to look at each piece because they each tell us something and they all work together.

Speaking on NIH, the other day Brent and I were talking about something having to do with them and Jilli piped in and made a rude comment about the people at NIH. She is free to say that experience we hard, hurtful, exhausting or any other word she wants to describe how the experience made her feel or how the people made her feel... what she can not do is say hurtful things about the people because we always need to treat people with dignity because they are a person. That does not mean that we pretend that they did not hurt us, because that would be a lie, but there is a difference between saying someone's actions were hurtful or misinformed versed saying that the person themselves is stupid... we can disagree with a person's actions and behavior and how it made us feel without disgracing the person... because when we try to demean them as a person then we just add to the throwing of rocks. This situation hurt us a lot and my kids are free to express that and free to never go back there... they are not free to think of the people who work there as less then themselves. Thats a lesson that is really important to me that the girls learn.

Today did have one really hard moment. I was helping Jillian clean up her 18in doll stuff. She was very kindly just given some doll things from a family friend that she is keeping at grandma and Bumpa's house to play with when she goes there. She also has a few dolls at home. She mainly plays with her two American Girl dolls, one Grandma bought for her in Chicago a few years ago and one she was given from Child Life at the hospital in April and the doll goes everywhere with her. I was talking to her about her dolls and we were talking about if she plays with them all and if keeping all of the dolls she currently has is something she wants to do (she has a couple Our Generation and My Life dolls that she has been gifted) and she said yes that all of the dolls were her friends. We have conversations like this about different toys from time to time because I want to make sure she is using what she has and if not we should share with others. She was talking about how she wants the new Joss doll (the American Girl of the Year who has a disability... big deal to Jillian) and I told her that daddy and I had not talked about that doll yet but that American Girl dolls are expensive and mom and dad need to talk about expensive things together to make the best choices for our whole family. This is a conversation we have often when she is wanting a toy at a store or eyeing something up. I want the girls to understand that money is a finite thing and we need to think about how we spend it. I want to have money conversations with them now about toys so that they are better adults.
We don't have medical money conversations with them directly at this age though because they are children and that does not need to fall on their shoulders. There has been a lot of medical bill conversations the past few weeks as there is questions about a couple of big things possibly not being fully covered by insurance and we had a couple of meds filled this week that ended up not being covered fulling so Brent and I had a few conversations around those. None of them directly with her but she reminded me today with how much she hears. She still really doesn't have a great concept for how much X amount of money is in relation to other things, she is learning about coins in school but paper money and its value for things is not something that has clicked yet, something we need to work on and I have some ideas into how we are going to do that better then we currently are, but any dollar amount larger then 10 to her is huge... and it should be at 7 when the tooth fairy at our house brings two quarters. She understood this some at Christmas time when the week before Christmas she asked Santa for the American Girl Mars habitat which is $350 and we had to explain to her that Santa has to get things for all the kids in the world and he has a budget. She understood that $350 was a very large number... which is why she asked Santa for it because she told him that it was too big of a number for mom and dad to spend. Plus even if Santa wanted to buy it... its been sold out and discontinued for months.
But back to today... I told Jillian that Joss is close to $100 and her eyes got huge. She said she didn't know it was that much and then she got tears in her eyes... and asked if we could get her a picture of Joss to hang up. I told her it was ok that mommy and daddy still had not talked about Joss yet so she was not a yes or a no so it was not worth crying about today, that she needed to give us time to have a conversation and then we could have feelings about it... she responded that she no longer wanted us to buy Joss for her and was really ok with just a picture... because she wanted us to use the expensive money to keep her alive. Tears started flowing down my face. We have never told her how much taking care of her costs and we try never to rest the money part of it all on her shoulders... that is too much for her to carry at 7... I just wanted her to think about the value of toys when I started this conversation and about using money wisely and talking about your money use... I never thought it would go into a healthcare spending conversation. My heart was gutted. I gave her a huge hug and told her that her job is to be a little girl and mommy and daddy's job is to worry about the money and that we will always do whatever we need to do to keep her alive. She said ok and went to playing and I left the room and sobbed.... DAM YOU US HEALTHCARE SYSTEM!
We are the "lucky" ones in this system. Our kids have private insurance from Brent's work which is decent coverage and they have Katie Beckett in one of the best Katie Beckett states, they are well insured. Are there pieces that still fall on us, yes. Are there pieces of things that are needed for their care that don't fall under insurance, yes. But overall we are SO fortunate because of the state that we live in. And we are SO fortunate to have our community. The times people have stepped in for us. The times people have loved us. The times God has literally put the check we needed in our laps at the moment we needed it most. The cards of encouragement. The times God has had to shut my suborn self dependent self down and told me He has this. The days when we got a medical bill one day and the next got a check in from an extra job Brent picked up that covered it... has every bill or thing been that way... no, there have been times when it has been "don't spend anything until the paycheck clears" but there has also been moments of awe and wonder.
But our system is broken if my 7 year old knows it is broken. The reality is that this will fall on her back someday as an adult. What that all will look like is so up in the air. I am thankful for the families who have gone before us and worked to help pave paths for us, but what 10 years looks like from now I am very unsure... but it kills me to think that she will have to hold the weight of the cost of staying alive in our system because our system is broken... it works for the few and the corporations. Everyone has the right to life... and yes for my kids that might cost more then for yours... but if we truly believe that everyone has value that we take those costs as part of being a society. I'm not even advocating for or against any specific political plan here... I am advocating for a social ideology that says all people has value, and what does life look like when we truly believe that... because I think the world would change if we really did... currently its only lip service.
Don't worry about Jillian getting the doll... I had forgotten she had gotten some birthday money in the craziness of December and I had put it in a safe place during the crazy and had forgotten about it so she likely has part of the money she need to buy the doll and throughout the year I am sure she will earn more money. Brent and I still have not talked about her and the doll (other then this sad story) because talking about buying a doll was not at the top of our list today of things we need to make choices about. Don't feel bad for Jillian for not having the doll, she is fine, but what I learned about her brain and what it thinks about money today is much larger then if she does or does not have a doll. She is ok, she went on with the rest of the day like this conversation never happened and had a great time. This did give us clues as her parents though of some thoughtfulness we need to have around money conversations with her. You can't see into your kid's brain until they tell you... today she told us... now we move forward with that information.
Now its time to cuddle up with my freshly bathed kids (with a glitter bomb they got for Christmas, it was a big night here!) and watch Full House!

Watching Bear in the Big Blue House

Building the Playmobil Pharmacy

Doing the hair of her doll... man Brent's grandma would have loved this... Brent's grandpa go her this salon chair a few years ago and I love watching her do doll hair just her her Great Grandma Jill doing so many people's hair

building with daddy

 

Heavy healing

Yesterday Jillian spent a good chunk of the day in infusion which has helped her body wake back up a bit although we spent an hour at 1am with her awake with stomach pain. I am hoping the leg bruising starts to turn around too.

We came home last night for the first time since Christmas Eve which is really nice. The kids are loving having their toys to play with! This morning I had an early physical for myself because I had put that off for far too long as I was about to be totally out of refills for my own meds which can't happen without some big consequences. I stink at making appointments for myself!

At the end of my appointment I needed a lab work done. Lydia kept asking me if they were going to hurt me and insisted on sitting on my lap so she could hold my hand. Jilli sang me a hospital song during it. It was so sweet having them comfort me during a poke like I comfort them.

We ran to Target after because we have not been home for 3 weeks so pretty much anything in the fridge needs to be thrown out.

While we were at Target I got a call from the GI procedure scheduler that they have a testing day for us... over the same time as NIH last year. At minimum they will be doing an EGD, placing a throat motility probe, doing a swallow study and throat motility testing.

To say I am scared is putting it lightly. I feel like I am signing off giving them permission to put liquids in my kid's lungs. I feel like they are not sure what to do so we just keep doing the same things over and over. I feel like I don't have a lot of choices.

I have been thinking for a while about what we were going to do this year over the time we were at NIH last year. I am proud of how far we have come this year, it has been a lot of work for all of us. At the same time NIH is still a wound, one that got picked back open last week in our appointments, one that we are working towards healing for but we also need to admit that its going to take time. I also just wanted something to mark this year as different...

This is not what I was looking for! Until today we had no appointments in February and now we just booked a hospital stay.

I am trying to hold space that even though this is not what I wanted or imagined for the one year anniversary of NIH, that maybe there will be healing in me in this.

So can you join us for prayer in some things around this:

-We would like ear tube surgery to happen at the same time as the other testing along with an airway scope to check out a spot that has been of interest in the past. We need ENT to agree to this AND for it to work out.
-Pray that this shows something. We know from day to day living with Jillian that there are symptoms going on... we need to prove that (again) with this testing so we can best help Jillian.
-For our team to not just get frustrated. They can't explain a ton of things and I completely understand what that feels like but sometimes it starts to feel like when they can't explain something they just start questioning everything or they just get frustrated. I have had to learn over the last 7 years that its ok to not know everything... that doesn't mean that it isn't frustrating or that we just give up, but I need practical, just because we can't explain some things doesn't mean they don't happen and it doesn't help my kids when we get stuck in that mindset.
-Pray that this testing helps us heal from the testing at NIH.
-Pray that we are listened to and respected as part of the team.
-Pray that everyone works well together
-Pray for logistics because viral restrictions will likely still be in place at the hospital during this time. That will mean we will need arrangements for Lydia during all of this.
-Pray that Jillian doesn't pick up any illnesses while in the hospital
-For Jillian as she often with testing these days is just over it. Most parts of our lives just are what they are... testing is hard because it is often asking a lot from her both physically and mentally.
-For Brent and I. Honestly today I just want to cry. Today this all feels like a lot. 


In other news, I was able to get urology scheduled for next week and palliative is trying to get us in too so we can get a bunch knocked out next week. Today we are going to take a kind rest of the day. The kids are going to play with their toys and Jilli needs to do school. I bought a freezer pizza for dinner so I don't have to worry about that and I will try to work on unpacking from the last 3 weeks so I can pack for next week... but we are going to try to take it slow and kind.

This testing that we are talking about in this post is the scheduled testing... this is only round one for now... round two will happen during Jillian's next big crash so we are not able to schedule that, it will all just have to happen when we end up in the emergency room next. Also they told us yesterday that the neuro stim is booking into March so that will be a little while yet.

Lydia playing Spot It

Doing Yoga

This is what Jillian's legs looked like the morning of infusion. No one knows why this happens. These spots are like an external sign of how the inside is doing. The come rather suddenly and go with Jillian's crash events and are weird!

Infusion party!

Why sit on the chair when you could sit on oxygen *eye roll*

Lydia hugging her couch. She kept saying while we were gone that she missed her couch

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

Kohls came to help take down Christmas and Jillian enjoyed helping

Jillian's friend Caroline came by with Jilli's Christmas/birthday gift! Tiny Super hero trading cards! 

The girls decorated the railing at RMH with snowflakes once Christmas came down

playing dolls with friends!