2024 Feeding Tube Awareness Week Fundraiser

 

Its that time of year again!

When Jillian was a baby we didn't know the medical journey ahead, but at just a few months old she had her first feeding tube placed, and feeding tubes have helped to support our girls' getting nutrition since.

Several years ago we decided we wanted to be intentional about helping other families who are also walking a medical journey and we settled on using Feeding Tube Awareness Week, since a feeding tube was the first big thing in Jillian's journey, as a time we rallied our community to help other families.

In past years we have done fundraisers to support Ronald McDonald House and Children's Hospital, however this year we are partnering with a new organization... in 2019 right after a stretch of hard medical testing Jillian received her wish through Make A Wish and last year in 2023 Lydia received her wish! In honor of both of those amazing wishes, this year we have decided to have our Feeding Tube Awareness week fundraiser benefit Make A Wish Wisconsin!

In talking with Make A Wish they gave us a list of a few different things they needed so we let the girls each pick a category! So this year we are collecting board games and supplies to make spa kits! The items collected will be gifted to children while they go through the wish granting process!

Feeding Tube Awareness Week is Feb 5-9  but we know sometimes people like a head up! The registries are live now if shopping is in your budget now or there is a few weeks until the end of the fundraiser if that works better for you! We work hard to make this fundraiser accessible (that is part of our conversation with organizations we partner with) so the goal is to have things $20 or less on the wish lists (there are $1 things!) so that the most people possible can join in (and people can buy multiple things if that works for them!)! When you purchase off the registry, everything is shipped directly to the fundraiser making it easier for you!

 

Target:

https://www.target.com/gift-registry/gift-giver?registryId=034ce460-b18d-11ee-a8d6-a56ca8604f22&type=CHARITY 

Amazon:

https://www.amazon.com/registries/gl/guest-view/16BD29HAGO7EF

 

 

Sharing Info

 I am a person who has always enjoyed research about a topic if it is something that interest and matters to me. Like deep drive into figuring out as much as I can about something. 

I remember being a teen and a family I baby sat for was having a baby and I wanted to buy the perfect gift so teen me drove head first into researching baby products. By the time I was pregnant with Jillian almost a decade later I knew all sorts of details about car seat safety, what products lasted longer, and how different things work. Its still something that if someone asks for something around baby products I love deep diving back into even though I have no need for the personal knowledge anymore. Researching it is enjoyment to me.  

And I have other things I also deep dive into, I enjoy researching Disney and board games, other things I research because I need to, like covid, nuromuscular disorders, and wheelchair brands. Jilli is currently in the process of getting her next wheelchair and I've spent hours looking at the different ones to make sure we are making the best choice because it needs to last her 5 years for insurance. 

It feels like the common theme of everything these days is how divisive the world is, I get where it comes from, but looking at history some of the narratives currently seem a bit produced to create even more division. 

Sometimes I wonder if it isn't as much about true division as it is about posture. Humans are not great about continual knowledge unless it serves a person... and that includes me, there are thousands of topics I have no care to deep dive into, and likely will gain little new information in for the rest of my life. There are other things that feel so vast that even when I learn new things I feel like I have barely touched the topic. I have a rule for myself on Twitter that I follow no one I could easily get their personal phone number, so that means I mainly follow people sharing knowledge about healthcare and people sharing about Christianity, sometimes including experts in both of those fields. In both of those areas I feel like I barely know anything, what I do know is a pin drop largely made up of lived experience. I keep learning but also feel like I have too little knowledge to pass along in helpful ways, and it both of these areas I feel like most people aren't interested in hearing it anyways. 

 But another weird thing about our posture currently is that fact, opinion, feelings and wants have weird blurred lines. People will share something as an opinion and someone else will argue with it being a fact. 

I have said before, I'm a person who for my whole life is going to be working on being better at small talk... its not that I don't understand its social place, its that for me it isn't natural. That doesn't mean I give up on it, but its something I will always be working on and often falling short of what I would like in. It pains me to know that sometimes my struggle with that is hard for others when having a conversation with me or that people have taken that to think I don't like them, which is why I will continue to work at it. 

For me though sharing information is a way I show people I care about them, because as much as I love to deep dive into some things, sharing deep dive information feels vulnerable. But its equally hard for me because if its on a topic where someone is looking to me for information I don't have I feel like I am letting someone down, but I am extremely far from knowing or having thoughts on the majority of topics that are out there. Also, my least favorite way to share knowledge is in the form of debate or argument, its not that I have to be right, its that I don't learn best in tension.

I also know that there are times when people just want an understanding ear and I can be faster to jump to solve and info mode before a person can or is interested in hearing the information. Sometimes people just need to vent and giving space for that is so important. 

But at appropriate times, what would change in the world if we looked at information sharing as a gift people are sharing with us? What would be different if we looked at motivation behind why someone is sharing something? I'm not always good at this, but there have been times someone says something I deeply disagree with on the internet but I know them enough to know that their heart behind what they said was love. That doesn't mean there are not truths, but if we pause to think about why someone said something, that takes us into a conversation with an entirely different posture. It also should make us all stop to ask what our motivation for sharing information is... is it to make us feel smarter or better, or is it because we care about the people we are sharing it with and want to help them. That also means being ok if people don't take that information in, even when that is hard and hurts. For me I want to see people do well, but in the end we all make choices, and while our choices all effect the rest of the world, we can't make other people's choices for them.

 Somtimes when we are hearing new information it can be one more thing, something else we are expected to know, which can feel impossible, but I wonder if we would listen and take in information if how we viewed intent and posture behind it differently? That pondering is more about how I take in information then necessarily the rest of the world.

Any maybe this is all just my perspective since this is how my brain defaults, but hey if you ever want info on things I have deep dived on, I'd be happy to share what I do know, but I in no means am an expert!  

 

  

10 years in

 I enjoy painting, its not something I am great at but something I find cathartic. Some paintings I had made with time and detail… while others were made in pain, they don’t tend to have much detail and can be messy, but they have a lot of meaning to them. In our house is a painting I made in 2020 of a lyric from the band Switchfoot. It says “hallelujah nevertheless you’re my joy invincible.”

Yesterday Lydia noticed the painting and asked what it meant, so I played her the song it comes from. It had been a little bit since I listened to that song. The CD it is on came out in January 2019 and that song was played a lot during that year so it brings me back to that timeframe.

My Facebook memories this time of year are like a gut punch. Over the years during this timeframe my grandpa got really sick, Brent’s grandpa died, Jillian had port surgery, we went to NIH, a person made a shit choice to hurt us, and Jilli’s first hospital stay and multiple others. This time for me brings a lot of reflection for me.

I see the people who came out of those situations. And while I would like to say we always came out stronger, to be honest some of them we came out of scarred, and the reality is that is life. Sometimes learning is incredibly painful and there are times that while the destination might be good, its ok to say that the journey sucked at times!

Today is the 10-year anniversary of Jillian’s first hospital discharge. There have been many since. I see the person I was at that point. I see the determination. I see the mindset I had then. It helped us to survive, it got my kid what she needed, and it made it so we could keep going.

Hindsight also has a way of showing you your own shortfalls. I sure would love to pretend I don’t have any, but being me I can see my own up-close. I was so determined then that were going to get to the root of the problem. While we were so happy to be discharged and so hopeful for resolutions ahead, we also left that first hospital stay with not much of a plan, and would end up right back on that same floor just a few weeks later.

That second stay brought Jillian’s feeding tube, the floor dr said it was for 2 weeks, the GI doctor who had been practicing for a lot longer laughed at the statement. I was hopeful it was the stopgap to get weight on her, figure out the issue and fix it. I was SURE it would be gone by her first birthday… I was going to work hard enough to make that happen!

The next several months didn’t go according to my plan. To get calories in her I was pumping plus we were adding formula, but I kept a stash of breast milk in case she started eating orally again since that is what she had preferred orally. It was a wrestle for me when it was coming up on the time when it would no longer be good and we had to choose to use it in her tube or throw it out.

One of our motos here for a long time has been we will do what we need to do for the girls. That moto has played out in so many ways over the years, from sleepless nights to learning how to do medical things at home that I never thought I would be doing (I mean everyone mixes TPA in the child’s bedroom right). There are so many practical ways I have lived that moto out.

But hindsight has me wrestling with my ablism of thoughts in this journey. Its not that our moto is wrong, its still what we keep doing, and I still stand by that. I don’t regret my determination; we have dam needed it at times. What I’m wrestling with is my determination that if I just worked hard enough, did all the right things, read enough, saw the right doctors… that I could solve everything.

When things go sideways sometimes in life you have to wrestle with what is of most importance; what has to be taken care of right now. Priorities change and shift over time. Something for us that has shifted over time is asking the question whats best for the girls based off of the information we have right now and historically, not based on some imaginary idea of what things should look like.

In practical sense 2020 shook a lot of that up for us. Our kids did weekly therapies for years, our therapists are great and have helped our kids a ton, but what we also learned in 2020 is that breaks a good too. But for so long I thought that if we took breaks then I wasn’t doing everything I could to help the girls. Its not that I want to help our girls less or that we have given up… but sometimes the mindset of not having to push at a perceived 100% really changes things. I viewed things that if we didn’t do all of the things then we were not living in hope… what I learned was my eyes on what hope is wasn’t always right.

Reality is that while I might have determination, 10 years later, we still don’t have a definitive name for all of this, despite how positive I was that I would push hard enough and make that happen 10 years ago. We might be closer, last year we identified some genes of interest that might be the pieces but the reality also is that we have been told it will be years before we have any solid answers on if they are our not.

And the funny part is, that while 2023 me would like that answer, it doesn’t take up my brain like it use to. I use to think that if it didn’t take up my brain that it then didn’t matter to me and what I’ve learned is that isn’t the truth. I still do all the things the girls need me to do, just last week I learned how to give a new medication via their ports that has a whole different protocol then anything we have ever done before. And getting the med in hand took many, many phone calls because it ended up at the wrong pharmacy and not written in the way that the infusion pharmacy needed… and I managed taking care of all of the details to make sure the girls got what their medical team said what was needed. Its not that I have given up on my girls, have no hope for the future or don’t still have determination… its that how I think about it all has changed. And a piece of that is continuing to wrestle with ablism I bring in my views of the world and how that impacts me raising disabled kids. 

When Jillian was a baby I read a lot of blogs trying to figure out what I could, but the question I kept having then was “where are all the parents of older kids who have been doing this a while?” Because those spaces were filled with moms of preschool aged kids who had medical needs for a few years or by parents of kids who had suddenly become ill later… but the parents of the kids who were 10 years in didn’t seem to be around. I worked as a special ed teacher… I knew these parents existed somewhere.

And the truth is that 10 year in me, doesn’t blog often, can be found sometimes in the medical online groups but not nearly as much as I use to be… and its not that I don’t care about other families and helping them (I still do behind the scenes work with multiple organizations, just because we are still following viral precautions doesn’t mean we stopped helping others, we literally just finished a big virtual fundraiser for Ronald McDonald House on Friday) its more that 10 year in me is a bit more steady. There still have changes and adjustments that are made medical wise (2022 was a mess with formula recalls) … but it feels less flailing most of the time then it did in those early days. How I view things and see things have changed and I have been humbled SO many times. I still get pissed about things (there is a doctor I am very frustrated with at the moment… and so is most of the rest of the members of our team, they are playing games and just doing nothing likely won’t work here!)  

But to come back to the song lyrics, yesterday as I was holding Lydia listening to that song my eyes got misty at the line “Everything heals, We are the children of the promise.” There have been so many February that “everything heals” made me laugh, because it felt so far fetch and unrealistic… but what has changed in me is what the idea of healing looks like. The reality is that healing often doesn’t look like what we imagined. It doesn’t always look like what society expects… and we have to learn to be ok with that or we can get in the way of our own healing while trying to making it look like we think society expects. I have healed in many ways from past Februarys, but not in ways that I always thought healing would look like.

This morning a different Switchfoot song came on as I was getting ready, and the chorus ends with “let that be enough.” I for so many years have felt like I needed to prove to the world and myself that I was trying hard enough, doing enough… and that if I figured this all out it would prove that… at this point, if you don’t think I’m trying hard enough 10 years in (and I will admit I’m not perfect!) then I think that’s not a me problem anymore, and if you want to try to make that a me problem, 10 year in me has words for you that 1 year in me wouldn’t have used. And I am going to have more grace with this version of me, its my job to do the best I can for my kids, and that looks like a lot of different things, but for now, I think the mindset of not thinking that if I only try hard enough, I can do everything, is a much healthier way to look at things.  I read a quote once (I tried to find it) about how sometimes we build our life up so busy to not deal with the hard stuff and that made me stop to think if I was doing that with the “good things” but at a busy rate that made me unable to wrestle with some of these things? The past few years have brought time to reflect on that, to reflect on the past 10 years, to think about what have been helpful and not helpful mindsets, even in good motivation and action.

This me doesn’t have it all figured out just like 10 years ago me didn’t either… this me is just trying to be better with being ok with that.

 

 

My painting... not straight words, not blended colors, but I see the person who painted this in a time where the earth felt like it was shattering and I see the person who is still going

Ps: the other part of the Switchfoot line “we are the children of the promise” caught me a little differently this time, because my mom and I are currently co-leading a virtual Bible study through a book Beth Moore and her daughter Amanda wrote on the book of Galatians and children of the promise is a theme in the study, funny how the more you learn, little things hit your ears differently.

 

Family Board Games

 My last blog post of 2020 was about games for a 7 year old. Little did we know how much board games were about to become a lifeline for us. 

For a long time I didn't think I could do modern board games. The first time I saw someone playing Ticket to Ride I was overwhelmed. In my head board games were Monopoly or Chutes and Ladders (neither of which I care for) or way too complex games. 

Thankfully in late 2019/early 2020 I had picked up a couple of board games that were past the preschool age group to play with Jilli... and we fell in love with them! Then the pandemic hit and we, the people who were rarely home, were home 24/7 so we started playing board games more to fill our time. As time has continued to go on and we have continued to be home our board game collection has grown and our top games have changed as well. So I figured I would do an updated list of some of our top games. These are not all of the games that we own, but some of our favorites, so if you are looking for games these are our key ones and maybe you will like some of them too.

I am going to group this by what people in our house play a group of game. Jilli is 9 and Lydi is 5. Jilli loves board games... Lydi is ok with board games so that effects who likes what here. 

Brent, Amanda, Jilli and Lydi:

-Slide Blast

-My First Castle Panic

-Check the Fridge/Oven

-Clumsy Thief/Jr

-Sleeping Queens

-Go Nuts for Doughnuts

Brent, Amanda, Jilli:

-Planet

-Via Nebula

-Welcome To

-Ticket to Ride

-Patchwork

-Shifting Stones

-Bloom

-Battle Sheep

-Jurassic Parts

-Kingdomino

-Where to Go

-Genius Square

-Love Letter

-Llama Drama

-Queendomino

-Carcassonne

-Keys to the Castle

-Isle of Cats

-New York 1901

-Trellis

-Abandon All Artichokes

 

Brent and Jilli:

-Wizard Lizard

-Pokemon

-Trash Panda

-Villainous

 

Amanda and Jilli: (Jilli and I are playing the campaign story of this game together)

-Kim Joy Magic Bake Off

 

Jilli and Lydi:(Brent and I will join in these games but these are games the kids prefer)

-Stack Up

-Sold Out

-Raccoon Rumpus

-Scoop Up

-Pancake Pile Up

Jilli:(Brent or I will play theses with her but she likes them a lot more then we do)

-Carmon Sandiego

-Icons

Lydia:(We join here in these, but these are games we play because she likes them)

-Funky Chicken

-Blues Clues

-Bear in the Big Blue House

-Disney Princess Cupcake Party

-Match

Games we haven't played yet that we own that are top of our play next list:

-The Mind/Game

-Forbiden Island

-Summer Camp

Catan Jr

Games We have played and really disliked:

-Set

-L.L.A.M.A

Games for a 7 year old

Jillian has always LOVED board games... like her 3rd birthday party was a board game party!

Over the last few months between her birthday, Christmas, a local learning store closing, the magic room and the Go games at our mall closing she has gotten several new games. This has been perfect because she hit the point where she was ready for the next level of games.

So here are some of our favorites right now if you are looking for a game for a child in your life.

1. Sleeping Queens. We love this game because it helps with mental math because to play number cards you need to make a math problem. This is a game that is a great mix of luck (drawing cards) and strategy. Jillian has loved playing this with friends of all ages and the game is just the right length of time. The goal of the game is to have 50 points or 5 queens to win the game.

2. Slide Blast. This was an impulse buy when a local toy store was closing because Jillian and I love to watch vlogs about amusement parks so we thought it would be fun to have a game about a water slide. We like this game because it is a different stratagy depending on how many people are playing since it is a 2-6 player game. This game has appealed to adults and kids and is a good mix of strategy and luck.You goal of the game is to make the longest water slide.

3. Trellis. This game was bought by luck because it was on clearance. This is a color matching tile game where you claim tiles. While this game is fun we did find we needed to watch a couple of youtube videos to fully understand the instructions and there are a few situations in the game that I am still a little unsure about. Jillian loves gardening so a game with plants is something that interests her and the game is beautiful! It works for a wide range of ages and the game play is not long at all.

4. Genius Square. For this game you are playing with a grid and you roll dice that tell you where to fit the pegs. Once the pegs are in the two players race to see who can get the shapes in first. This game can also be played solo.

5. Set. This is not Jillian's favorite game because she is still getting the hang of it but for this game you are making sets of three by finding either only one characteristic that is different or everything has to be different. I think with practice she will get this game more.

6. Logik Street. This is a single player logic game where you solve puzzles about where each person goes in the house. Jilli and I played this for a long time one day and there are a lot of different cards so you can play for a long time. It also spirals in difficulty so it helps you to learn to think through things as you go.

7. Water Works. This is not a new game as my mom bought it for Jillian because she had it as a little girl. This game can be a bit cut throat with giving others leaking pipes. I didn't think it would be as fun as it is.

8. Race to the Treasure. My brother and Mikaley gave Jillian this game for Christmas and we played it multiple times. It teaches directionalality and working on a grid. It is also a game where everyone is on the same team so you are working together. 

9. Quadrillion. This game is a single player game that is a mix of Genius Square and Logik Street. It has multiple shapes that you need to fit into the give space however the give space is not a perfect square every time which adds to the challenge and Jillian can play it by herself.

10. Chickapig. Jillian was given this by a friend and they taught her how to play so I have not yet however she says its the best game because it has poop! A very 7yr old game!

11. The Mister Rogers Game. Jillian LOVES the original Mr Rogers show. This game is a Target exclusive and is a card game where you are building the neighborhood.

What are your favorite games for this age group?

The journey

Just like the rest of life, the medical side of life has a lot of ebb and flow to it at times. There are times when things are busy and other times when things are calm. The difference between calm and busy has been a bit blurred lately because some interventions have become more frequent but then that becomes normal... our fall has been weird!

But in the month of January we met with several members of our team and added a new doctor to our team and we are moving forward with a few different things.

-Jillian had a neuro stim placed on Monday of this week. This is a device that she wears on her ear for 5 days and it send electrical pulses to her nerves to try to help with GI symptoms. Currently we are trying this for a week, waiting to see if insurance covers and then going from there. We have several friends who have had good success with the neuro stim however it takes about 12 weeks for them to really feel like it works. Jilli has done pretty good with it. Her ear is sore because it has 7 small needles in it that attach to her ear. She asks all the time when she can get it off (tomorrow at 1:30). We will see if this is something we continue with.

-We met with Palliative for the first time this week. Several people have asked us about that over the last year but a couple of weeks ago our GI and undiagnosed doctor decided that was the next right move for us and referred us there. Honestly without them asking for us to go there, I don't think I would have ever actually made that call. But they are right, that is the place we need to be right now because we are having a lot of quality of life conversations and currently all of that is falling on Brent and I. For 6 years we said yes to most medical testing and honestly we had a view of just wanting an answer so we were willing to do what we felt we needed to do to get the answer... now our focus is shifting... trust us that we still want an answer... we also want our kids to be kids. In talking with our team we could keep testing the same things over and over but it likely will not be helpful for our kids and take away from their childhood. So now we focus on what will be the most effective and most helpful things for them to be able to be kids. Palliative is helping us have this view for our kids. This is also stepping in for what medical interventions we do. Brent and I have always looked at the weights of different medical interventions... when oxygen fixed what the multiple inhalers never touched we asked if we could discontinue the inhalers because our kids don't need extra unneeded meds pushed into their bodies. Our kids wear their leg braces when they are going to be walking a lot or playing hard, but we don't have them wear them at calm times because it is not a medical intervention they need all the time. Jillian pallet has low muscle tone that effects speech, in talking with ENT they offered us a surgery like cleft pallet surgery however Jillian doesn't have a cleft and the risks of the surgery is sleep apnia which is not something to mess with for Jillian, so we said we would keep trying to help with pallet with speech exercises. Urology offered us cathing however at this time Jillian does great at taking care of her own diapers and she is only averaging one UTI a year and doesn't deal with diaper area infections so we feel like least invasive is to stick with diapers for now and talk about things again in a few years. So while it might look from the outside that there are a lot of medical interventions that the kids have, there are probably an equal amount that we have worked with our team to decide those were not the right interventions for the girls. We don't want to do more interventions then what is needed and we try to make informed choices on the ones we do put in place.

-All of that said we are going forward with an intervention that feels huge right now. On the 10th Jillian is having a port placed. I know for some diagnoses this is rather standard but it is something we have tried to not do but it is hitting the point that we feel like it is the best choice. This was first brought to us as an option in April and at the time we said that Jillian did not need that level of intervention yet. This fall however Jillian has been averaging 2-3 weeks between crashes which means we are having an emergency at our house every 2-3 weeks since August! We need to get off this hamster wheel of emergencies! So we have worked with our team to come up with this plan where Jillian will go in for a scheduled infusion every other week to try to prevent the emergencies. While this is a new way to do this intervention we are hoping that it will work out to less hospital time. Jillian has had some times this fall were vain access has been hard like our hour and a half trip to lab and the 5 hours on Halloween we spent trying to get an IV in. That is not great for my kid's mental health. So with her team we made the choice to put a port in. I have honestly woken up every night since then questioning our choice, analyzing if we are rushing into this, trying to figure out other options. Multiple of our doctors have all agreed that this is a wise plan, and I know in my heart this is the right next step and it will likely increase Jillian's quality of life because she will be able to spend less time in the hospital, however it still feels heavy. It also doesn't help when someone on the internet that only kinda knows you bashes this choice you are making very publicly but thats another story and just added yuckiness!

-So Jillian is having port surgery on February 10th, and GI/ENT surgery and testing on February 18th. Last year we were at NIH February 10-20... This year we are spending that time have two surgeries. I was wanting to mark this February as different... but I was thinking a fun weekend not two surgeries. Its our year mark from something very traumatic. Honestly most Februarys have been rough in Jillian's life... her first hospitalization was in a February, she has ended up in the hospital many times in February... its a month that holds a lot for us, because there is the fun stuff of feeding tube awareness week and rare disease day... and then there is the heavy. Just know that we are holding this all right now, and it feels like a lot to hold.

-Lydia started on Azythro to help with her tummy pain... so far she has had increased stomach cramping so I am not sure but we are going to give it another round to see if her body handles it better the second round.

-Palliative helped to facilitate a conversation with ENT so we have the right things happening on the 18th including an airway scope to look a strange spot that Jillian had in an airway scope in 2014... we need to see have it is has done since then and what it might be effecting now.

-Please pray that insurance approves Jillian's new stroller qucikly! 

-We are home now for a week. For this week we are hoping to rest to have strength for the weeks to come and to get some things done around the house. We have been so in and out of the house since August that next to nothing more has happened in our bathroom projects and our house needs some serious organizational help! When you are always packing and upacking and just trying to do what you have to do until the next time you leave, the house suffers, we are going to try to help it this week.

-In fun news... in one of my last blog posts I talked about the American Girl doll of the year that Jillian really wanted. We worked together and added up her birthday money and she was working on figuring out some ways to earn the rest of the money. Our hospital had a project they needed kids help with so the girls helped, I didn't think that they would compensate the kids in any way (beause we were just doing it to help out), however they did, and in that Jillian earned the rest of the money she needed to buy Joss. I ordered it online on Sunday night and it came to rmh on Tuesday (she knew she had the money but she thought we needed to wait until we could get to the AG store, which she was fine with, but she had no idea she could order it online so it was a huge surprise when it came in). Jillian has been SO excited playing with Joss this week! And she is really proud that she spent her money to buy it.

-Please be in prayer for our local special needs community as this article came out this week and it is rocking the community. Many of us have had interactions with this couple and this brings out a lot of feelings. Stories like this are not ones that I heard until I was a mom of medically complex kids and the weight of these stories are held by the community. Pray for everyone involved: https://www.nbcnews.com/news/us-news/er-doctor-was-charged-abusing-his-baby-15-medical-experts-n1123756?fbclid=IwAR1s6eJS6FUp1ZPu-BZCHJGACBUR879oLHhyIl7dZadcYSDYsDOOelMZ75Q

-We are in the final stretch of our Feeding Tube Awareness Week fundraiser to collect Buzzy and Feeding Friends for the hospital. To read all about it CLICK HERE! Thank you to the people who have already donated. I know we have received 3 Buzzys and a couple of packages of Feeding Friends so far but we would love to be able to gift the hospital with more to help love the kids who are there! Feeding Friends can take a little while to ship so the sooner those are ordered the better.

-We met with urology last week and they said from a urology standpoint that Jillian presents like she has a neuromuscular disorder... if we could only have a name for which neuromuscular disorder that would be great. But that is what everyone says often. They did complement Jillian on how she helps to take care of things from a urology aspect.

-The girls spent time helping make things for others with friends at RMH. I also worked a bit on Tubie Friends... I believe the donation part of the Tubie Friends website should be back up and working so if you want to help pay for shipping to get these animals to kiddos that would be awesome!

-We spent SO much time playing board games lately which both girls love. That is one of the blessings of rmh, people to play games with which teaches my kids so much.

-There was some conversation this week about working on teaching Jillian typing more and focusing less on handwriting... as a teacher I am not sure how I feel about that yet... its a mixed bag. Writing is SO important in our culture and I want to give her the best shot possible... writing also takes a lot out of her and despite several interventions and weekly handwriting therapy with an OT, we really are not making much gains. We will figure this out, but this is also something without a clear cut answer. Handwriting and coloring is one of those ways that her muscle delays are shown clearly because a lot of prewriting skills children develop with little help and even with a lot of help they are not developing which has my teacher brain often scratching my head. She LOVES to draw and do fine motor things and is very motivated at working on it... its one of those areas where even if I was sucking at teaching her, she would still be farther then she is right now... its a reminder that there really is something going on there, and while I know handwriting isn't the first thing others see, for me its one of her heavier things.

-Jillian is working on learning 10s and 1s in math and is doing a great job at it and is starting to add 2 digit numbers.

-The girls are LOVING playing with this toys today! They are actually playing rather nicely together. Jillian was excited to introduce Joss to her other dolls and play with her Playmobil Hospital and Lydia is so happy to have her Barbies. I need to run to the store to get some food but right now I am just going to let them play... its good for their brains!  

I was SO proud of Jilli and how hard she worked at this. For art therapy they started with a pre made blob (all the red in this picture) and had to make it into something... Jilli make hers into the Steamboat Willy picture and you can tell what things are in this picture... that is HUGE for Jillian!

Sometimes tummy pain is hard!

Her neuro stim

The girls made hearts and put them on the doors of the RMH staff members

Jillian and her friend Grace showing their neuro stims... I am so thankful for Grace and her mom in this process... I think honestly if we didn't know them I am not sure that we would have gone forward with trying this 

The first night a couple of the leeds came off of Jillian's ear and Grace's mom helped Jillian get them back on since Grace has had so many neuro stims and they know how to do it.

A logic game in infusion. We are going to have to figure out an infusion bag because they will now be every other week and they are 5 hours long... so two small kids in a small room that need to be kept busy!

The girls LOVE Polly Pockets!

Queen Sara cut the box for her while she covered her eyes

Making Slime!