The costs of raising medically complex children

Last weekend we had 5 kids in our house, 3 of those five have feeding tubes and another has a life threatening allergy... medically complex was literally walking around the house lol. But as we watched Bill Mahr (after the kids went to bed) and the adults talked, we were discussing the costs of raising medically complex kids. A line I hear a lot is about how people who cost more in medical needs should pay more and I would like to present an alternate side.

I want to state first that we do this all out of love for our children. This is not a complaint, this is not bashing them or blaming them for anything... this is something that before I lived in the medically complex world I had no idea about and maybe you are just like me, so I try to use our life circumstances to educate.

So here are some things that have different costs because of being a medically complex family (these do not include the costs of the medical care itself), these are the ones for us, because I can tell our story best, other families will have other/different needs:

• vehicle: We have to have something large enough for a wheelchair, stroller and a lot of medical equipment. Driving a small fuel efficient car wont work. We also have to drive something reliable. We need to know we can get someplace incase of emergency and for the many appointments the girls have. 
• Bed: Jillian has a Comfy Lift bed... her bed cost more then mine. We started the conversation with Lydia's doctors yesterday about the fact that she needs one as well. These beds are well over $500... I would not typically spend that much on the mattress for a toddler. Additionally you still need a bed frame to put it in. Insurance does not cover this. We also have invested in many bouncers, angled sleepers and rock n plays between the girls becuase they always need to sleep at a minimum of a 30 degree angle
• Passy: I should have bought stock in pacifiers when Jillian was born. There are days where we go through one a day. Both girls are also particular about which ones they will take. This is the only thing they suck on and most people have a need to suck so we buy a lot of pacifiers at our house. 
• Nursery water: we live in the country and have hard mineral water. Our water also has something in it where it smells when it gets warm. We have had it tested and it is safe for most people to drink however we were told it is best that the girls use bottled water. One gallon lasts us two days. 
• Vitamins: We pay over $1000 a year in vitamins for the Jillian. Jilli is on the mito cocktail and Lydia will likely start on it soon which will raise the cost again. Many of these vitamins help the girls just as much as their prescriptions
• Probiotics: Both girls also take probiotics and they help a lot at keeping the yeast infections at bay and with decreasing laxatives. We spend about $60 a month in probiotics
• Food at the hospital: hospital food is not cheep and parent food at our local hospital seems to keep going up in price and I am not sure quality is following that upword trend. Since starting to stay at RMH this has been relieved some because most nights they have dinner provided but between clinic appointments and overnight stays the cost to eat at the hospital adds up fast
• Specific toys: There are specific goals the girls are always working on to help them and often we are looking for ways to make that fun. We buy a lot of things to help with their targeted goals. 
• Stroller: cheep strollers tip when you put medical equipment on them or the baskets break, or are not supportive enough for when the girls' muscles give out. We have two Baby Jogger strollers because of this to be able to support their needs. The girls also sleep in the stroller at RMH or on vacation so it needs to angle in the correct way to also serve as their bed.
• Face stickers: we buy Jilli's face stickers for her oxygen out of pocket
• Formula: right now formula is covered by the state however we are always shorted some and buy some out of pocket every year (and before having medicaid as a secondary paid outright for it) This is one of the most expensive formulas on the market. Our medical supply company charges $65 a can and a can last Jilli 2 days
• Electricity: oxygen concentrators cost money in electricity to run.
• Gas to get to appointments
• Phones: we pay more with a national carrier to make sure we have service everywhere. Brent is also working on setting up an emergency back up in case we for some reason don't have cell phone use. 
• Bags to carry everything: we have gone through multiple diapers bags and such because oxygen is heavy to bring places and it breaks bags. 
• Diapers and liners: Jillian pees a lot (Lydia doesn't and that is still an issue we are trying to figure out) and we have tried cheaper diapers but they don't hold enough. The state will now provide diapers since she is 4 however the only kind that holds enough for us not having to do laundry daily is Huggies overnights and those are not covered. We have recently started to buy liners to go in them since we added more water she is now peeing more overnight, that is what happens with a total liquid diet.  
• Dish soap: we can't buy the cheep stuff because their formula is hard to get clean out of bottles so we have to buy the name brand which adds up
• Clothes that work with feeding tubes: there are many things we find cute but that just don't work with having a feeding tube. While we are creative, sometimes it means paying a little more. Stomach acid also stains clothing really badly and sometimes you have days like today where both kids popped their med port and drained bile and you always hope it will come out but there is many articles of clothing that stomach bile has ruined 
• Furniture: Brent and I were talking about couches and how we have to go with leather because of popping med ports and drainage bags leaking. We have a cheap fabric ikea couch in our living room but it is really showing its wear from fluids leaking on it so when we replace it we are going to have to buy leather
• Housing: reality is we are going to need a new house as ours is not accessible to the girls. We have to pay off Brent's student loans first before that is an option but it is not going to be easy to find a house that is accessible in the ways we need. We have talked that we might have to build but that will cost more.

So what is the point of that list? Its not to make you feel bad or sorry for us... but it is to make a point... medically complex parenting is expensive even without the medial, insurance, therapy, and pharmacy bills. Many medically complex families have at least one parent at home to take care of the child's medical needs and all of the appointment/therapy/ insurance fighting needs. We will always have costs that come with the different needs. Having insurance that is the same price as others just levels the playing field a little bit and helps to offset the disproportion a bit. I understand the logic behind saying those who use more should pay more but in this instance we always will between things insurance does not cover and extra hidden costs that go along with the extra needs. But we pay it for our kids. We work hard to provide these things for them. We are not in the top x percent of incomes however my heart aches for the families lower then us as I wonder how they get by and know that many things are just have to be done without which sometimes hinders the growth of their child or the parents themselves go without basic needs. But we put our kids first. But I wanted to write this to expose the hidden costs, the things before having the girls I would have never thought of and I too before the girls would have probably been saying people that spend more should pay more however after seeing all of this my tune has changed. Maybe this will help mold your view too.

Special Needs Clinic

We are running slow here today. We got home about 8pm last night from RMH.

Wednesday we headed to Milwaukee for a blood draw for Jilli. They were supposed to draw her Coq10 levels last month however for some reason they ran b12 levels?! So we had to get that redrawn. It took three people to find a vain but she did amazing. She told them a couple of times that she didn't really like what they were doing but she didn't fight them at all and helped them look for the vain. She also watched her hospital songs on YouTube. She sat in the chair all by herself. She is one strong little girl! Once it was done she asked for a cool band-aid and they said the hospital does not provide fun band-aids any more, only the plain ones. She said she understood but looked a little bummed when one of the other phlebotomists went and looked and found two. Apparently one of the phlebotomists goes out and spends his own money to give kids fun band-aids. Maybe that is a fundraising idea in the future for the hospital, maybe something to remember in the fall after the run/walk. She was all excited as she left there with her Doc band-aid and Dora sticker.
We then headed back to RMH and Jilli and Nate played in the art room. After dinner Brent helped Kirk moving some of their things into storage and Nate and Jilli played some board games. They currently have a scavenger hunt around RMH with a secret message so I took Jilli and Nate around the house. There was a big storm going on and the lights were flickering and water was coming into the green room. It was an adventure! While the guys were out they picked up Kopps so we had that and then headed to bed.
Thursday morning the girls and I headed to Nate's room to help them pack and clean. They have rented a house in the area and are headed back to their home state to pack up all of their things to move here. It felt strange to not have them at RMH once they left because they have been there since last July so every time we have stayed there we have hung out with them (we met during art therapy and now Holly is one of my closest friends) but I am so happy that they are moving here.
Thursday afternoon we had Special Needs clinic. Here is some of what we talked about
-They are going to help coordinate surgeries in August. Jilli is having ear tube surgery and is supposed to also have some GI stuff done however communication with GI about it has been confusing. We also still don't know if pulmonology is add in too. The special needs nurse and I have been working on this all for a couple of weeks and not getting very far so now the doctor is taking it over and making sure it all gets figured out. The goal is to also do Lydia's year surgery that week as well so he is going to work on making that all happen.
-We talked about Jillian's pulse ox. She has been hooked up to it 24/7 since April. Her numbers dip at times we always have known they do other then a few odd overnight dips. However the pulse ox also errors a lot, the battery sometimes sucks, she trips over it, and is walking funny because it is attached to her toe. We talked about how it is not telling us anything we don't know but is causing issues. He agreed. So the new plan is that she has to have it on overnight since no one is awake watching her or times I think she might be running low. He said since I am with her 100% of the time and know her signs that he is comfortable with that plan. I am so thankful. I don't mind taking the feeding pump and oxygen with us everywhere, I know how much those help her however the pulse ox is frequently a pain without much benefit. She was playing iPad while I was talking to the doctor about it and I stopped the conversation and told her she didn't have to have the pulse ox all the time and her jaw dropped and then she got a big smile. She hates the pulse ox so to her this morning when she got out of bed and was able to take it off she was so excited!
-We talked about underlying diagnosis. Jilli just went through a mini crash and we talked about genetic testing. He talked about how the girls keep him up at night pondering what might be the connecting piece behind everything... we know they have a muscle disorder and a connective tissue issue but what ties everything together?! He talked about how he has thought and looked into if any other hospitals had any ideas to help us and he is not finding anywhere. He said he is looking at bringing the girls' case between the Undiagnosed and Rare Disease (read more about that progam here ) to see if they have any ideas. We talked about the mechanical issues of the girls' lungs and why the need for oxygen. It was nice to have a high level thinking conversation about the overall medical needs of the girls.
-We talked about the wheelchair and about how Lydia is going to need a new bed soon
-We talked about communication with a couple of our specialties. To get pulmonology to answer you is like banging your head on a wall. You never get the same person and often times no one ever contacts you back. For GI I love our doctor but sometimes getting questions answered is frustrating because they don't get to her. He said he is going to bring that up in a meeting because I am not the only one who is feeling that way. I am glad he is able advocate on a hospital level for us and for other families.

It was a really productive appointment. We were in with medical staff for 2 hours. Jilli love our special needs nurse and she was sitting on her lap and playing with her during the appointment. They are so sweet with the girls.

During the appointment Jilli did tell them a few times that she needed to finish up because she needed to get to gardening. After the appointment we headed back to RMH and Jilli got to do gardening while Lydia napped. She LOVES gardening at RMH and on Thursday she was the only kid outside for gardening so she got to pick stuff and plant stuff. They also learned about the life cycle of a butterfly. If you check out RMH's website they just did a blog post about the garden. We are so thankful for garden time! We then packed up and headed home. We head back to RMH on Saturday to make dinner for the families there (if you are still interested in helping let me know today please)

On our way home we stopped at Quaker Steak for dinner and Dan joined us. Today we are laying low. We ran to Target to pick a few things up (our Target has marked down a ton more toys so that would be a way to stretch toy donations to RMH for the magic room... wink wink) and then are working on cleaning the living room. I need to work on unpacking and Brent is going to mow the lawn tonight. All those fun adult things.

We did get Lydia into Shriners sooner. She is going on Thursday. I have taken video to send to them of what is going on with her foot because she likely will not stand on it while she is there (at least that is how she has been at all other doctors). I am praying for clear communication with them for why she needs interventions now and for us to make a plan together to best help her.         

Lydia with her toys at her feet lol

Life updates

Jilli:
Jilli had PT this morning. Since last Wednesday her energy has had times of being lower, to be quite honest, Wednesday and Thursday I kept waiting for the other shoe to drop. She was tired, she didn't want to do anything and was complaining her tummy was bugging her. It was very similar to how she was just before she got sick on Good Friday. I try not to let fear guide things but I was worried. Friday she did better and she had a fun weekend of zoo class and her best friend Caroline's family spent the weekend at our house. Today she is back to really tired. We are wanting to not let a crash happen as bad as the last one but we still don't know what caused that so its hard to know how to help keep it from happening that bad again. Her PT is going to call rehab to see their thoughts

Thursday we had lots of "fun" trying to get one of Jilli's med refilled. I sent it to the pharmacy a week before we needed it because I knew it was out of refills. They sent to the dr twice that they needed a new script and each time it came back saying "not appropriate dose" or to discontinue the med. This was very confusing as she has been on this med since 2 months old and it keeps her from vomiting acid into her lungs which is rather important in the fight to keep her lungs doing as well as possible. I called the GI nurse but didn't hear back so then I got special needs involved. The doctor sent me a message saying she didn't send that to the pharmacy and she has no idea who did and why they would do that. The doctor ended up calling the pharmacy at 8:30 at night for us to get the med filled at it had not been a week since I first sent it to the pharmacy and now it was needed right away. I love our GI dr but sometimes getting to her seems like hoops, but once I am able to communicate directly with her she is amazing. I then called Walgreens and asked on of our favorite pharmacists if he could please flavor it grape for me. This is one of two meds Jilli gets orally (she is NPO otherwise) and last month someone accidentally flavored it watermelon and we spent the month with a very sad girl who was not taking the med as well as she normally does because she hated the taste. Now thankfully we have it and it is flavored grape but it was a long hassle. I also asked the pharmacy how the script is standing for her one ned med. They gave us an emergency fill before we went to Disney but I had not heard if we were approved to get more of the med or not. They said they would look into it because the computer does not say if it was approved or denied.

Jillian's rehab dr did the peer to peer review with her insurance company today and they say no matter what they will NOT pay for any sort of power assist on a wheelchair until she has a manual chair for at least a year! AHHH!!! The power assist is really needed. Her PT and OT are sending a message today to the state answering all of the state's questions about it all. We are kind of putting all of our eggs in the hands of Medicaid! We found out the wheelchair company messed up more with the order then we thought which frustrate me as well. Getting a wheelchair for a 4 year old who needs it should not be this hard!!! Too bad we don't have a congress or president who are interested in help fix the problems!

On Wednesday we have to head to the lab to get Jillian's CoQ10 level run because for some reason when they drew her blood last month they ran an order from over a year ago from a different doctor and not what we were there to have run (even though there was issues and they had to call up to GI to varify orders and it was a whole ordeal so they knew what needed to be run) I haven't told Jilli yet but I am hoping she does ok with it. She did ok at her last lab. Its just frustrating.

Lydia:
I just talked to  Shriners.  Her leg is bowing more and more each time she stands on it and is dragging her foot and sometimes standing on her ankle. Her PT used special tape today to tape it in a better position but today her leg was worse then it has been before. I am hoping they can get us in soon and I am hoping bracing will be enough to help it. What had been something we were talking about needing to look into in the next 6 months has suddenly become a now problem.  Sadly they can not get her in until September 7th! We might have to go elsewhere. I will talk to her team but I am worried that waiting two months it will keep getting worse.

Lydia's vomiting is better now that she has doubled her does of PPI however she is on a lot of meds for someone her size so we are going to try to back off her H2. If that does not work then we will try erythro. We try hard to only use meds we have to with the girls so right now is going to be a balancing act as we figure all of this out.

We see Special Needs later in the week so I am hoping we have a good appointment where we come up for plans for a few things.

Other stuff:
Brent went to leave for work this morning and his car battery was dead. He couldn't take my car because the girls had therapy so he worked from home and once he is done we are going out to buy a new battery.  :/

We are serving dinner at Ronald McDonald House this weekend. When we looked a few weeks ago, no one was signed up for any meal for the 31-3 so we decided to when we saw the need to step up. If you are interested in joining us in helping let me know. A Lake Geneva Meats has agreed to sell us meat at wholesale price which we are very grateful for. We are going to do a cook out since it is the weekend of the 4th. Also, a lot of store are having toy clearance right now (I know Target has a ton). RMH is always accepting new, in package toys. They especially are always looking for toys in the $10+ range for kids under 2 years old. If you need help getting donations to RMH let me know.

We had a great weekend with friends and family. Saturday we met Nate's family and Caroline's family for lunch in Milwaukee. Then Caroline, Jilli, Stacy and I took the girls to zoo class. That night we cooked out and Caroline's family spent the night. Sunday they joined us for church and lunch. They then headed home and we went to my grandparents to celebrate birthdays. It was a busy weekend and I am tired but it was good to spend time with people we care about.

Are are also in the midst of stuff for the Children's run/walk. I am excited for this year!

God's sovereignty

I am a thinker. I am a person who argues with myself in my own head. I spend a lot of time in the car so I have thinking time.

It is no secret that I don't agree with many things going on in Washington DC right now. Its not that its Republican lead, I'm not against any party as a whole, I vote based on the candidate.

The more I am watching what is unfolding the more I am having anxiety. Its no question what is stressing me out the most, obviously it is the healthcare bill. Its not that I don't care about other things as I am following them as well but this healthcare bill makes me feel ill. The way they are doing it. You can think the way ACA was passes was right or wrong but that is in the past and done, what I care about is how people are acting now because you can spend all day saying "but they did _____" but that doesn't advance anything forward or look at your own actions. That just goes back to that plank and dust parable. If you spend all of your time whacking each other with the plank in your eyes that doesn't help anyone.

But this has lead me to deeper thoughts. I spent time praying about all of this last week and I just kept feeling God reminding me to be calm, that He holds the world and while that reminder is calming it sent more questioning as well.

See while I believe God has the whole world, I see the hurt. I know this will all be made right some day, but that doesn't mean that there is not pain today.

I have seen some Christians get defensive lately saying that people who are not on their team are not trusting that God has this all and that if we just sit back everything will be fine.

But I have lots of issues with that.

First we were not called to sit back and do nothing. If that is your view of Christianity please go read the Bible more. Start with the Great Commission. This lazy view of what a Christian is to do is not Biblical. The pray about it but never do or say anything is not Biblical either... you are confusing God with a genie if that is your view.... we are called to be hands on

Two the Republican party is NOT God's gift to man. Jesus is. Lets stop confusing that. America is not the Holy Land. There is nothing in the Bible about how America is better then any other country. We like to idolize our country. Before you tell me to leave or that I am ungrateful to live here, stop, I never said that. I am thankful I live in America. I am thankful for my opportunities, I also know that God made the whole world not just the part of it that is under the US Constitution and when we act like we are the one and only we act like a spoiled brat and put ourselves higher then God and idolize the American way. Every political system and person in politics is made up of sinful people.

I see in practical ways how this bill could directly hurt my kids. Because while yes a hospital has to provide stabilizing medical care in an emergency, it is not free and they are not obligated to do other non emergent care after you have been discharged if you are not paying them. I have heard multiple times recently from representatives in our country lately stating the law that emergency rooms can't deny you care do to lack of insurance but they are confusing that with the fact that most things are not a one stop to the ER once and they are fixed. They also seem to think that just because you were treated in the Er doesn't mean there will be a bill, trust me as someone who's local children's ER knows their family... they send bills!

So how does this get back to the title of this post? I am wrestling with know the end of the story but watching the hurt now.

I don't struggle with why my kids have medical needs, that is part of broken DNA from a broken world. I don't blame myself or anyone else in a direct "this is your fault." I'm not upset that they need feeding tubes to eat. I get annoyed when pumps don't work right, but the tube itself I see as amazing. I'm not mad that Jilli needs oxygen, I see how much it helps her. I get frustrated with med supply and how they supply the oxygen but not the root need. Its the preventable circumstances that frustrate me. Its when people don't do their jobs and puts my kids at risk. I don't ask "why us" in all of this because I see that everyone in the world has hard things in their life.

I am struggling with God's sovereignty right now. I am struggling with watching a healthcare bill that will hurt kids like mine and knowing God says that in the very end it will all be ok, but right now I can see how some people's actions will kill people. I struggle watching the wars going on in this world (go watch the Vox video done recently about the man made famines happening because of war right now) I see people suffering and dying because of a group of people's horrible choices. I know God is here in the midst and I know it breaks His heart to and I know the world is broken, but my heart hurts because some people choose to add to the broken.

I know as I wrestle with this all that I will come out a stronger Christian. I know my foundation, I know the people around me who I can wrestle this with and who will point me back in the right direction, I know I am in a Church that teaches the truth instead of the American gospel... but right now this is hard. Its weighing on my heart. Its not a right vs left thing for me (although the divide does no one any good... if you are voting for a team instead of American you are voting to sink the ship) this is a people thing.

And this is a salvation thing... because while I know my support system, I know many others are not in those same situations. I know there are people RIGHT NOW who are walking away from the church because of the American church's response to holding the republican party above God. This is their eternity and for some reason we seem to be just as ok with that as we are with prosperity gospel preachers... we turn our eye, we joke about it in inner circles, but we don't care about the people it is causing to go astray. We don't have the lost sheep attitude, we have the "if they were a good person they wouldn't walk away in the first place attitude" and that pushes people away.

So yes, I am struggling. In the end I will be better for it... but what can we all do to help? I first encourage you to learn about medicaid. Every state has something called "Family Voices" which does disability advocacy work and they have a lot of great facts and information on their facebook pages. I follow both Wisconsin's and Indiana's and those two facebook pages would be a good place to start. Once you learn about it more I challenge you to say something, Lydia doesn't have a voice in all of this but this massively effect her healthcare.  Next I challenge you to find active ways to be a light. Help kids, donate your time, cut out a cup of coffee a week and help worn torn countries, work at a homeless shelter, help refugees, do something to do good in this world, the world has enough evil and enough apathetic people... be different. Speak truth.

ps: on the healthcare debate, I don't see it as a two different philosophical ways at looking at a problem, there are other issues in government where I can see that everyone wants the same goal to fix a problem and see different ways of what each side thinks is best, however with this fight there are people who honestly whole hardheartedly believe infants with medical needs should not get care because it costs them money (either in insurance prices or tax dollars). There are people in DC that see my kids as a drain on the economy. There are also people that say if a family is too poor to pay medical bills then the person should die because that is how true capitalism works or the family should work harder ignoring the other things that go into it (me working right now does not financially work out as it would cost more in medical costs because of how hard viruses hit my kids, it saves money me not working but this is often overlooked when people make this argument). I can't look past what members of congress have said recently. I can't pretend that this is just two ways with the same goal of best helping families like mine, because that is not the real goal for many people. I agree healthcare needs work... I am fighting for a wheelchair for a 4 year old! But with this mindset you are only going to see an attempt at slashing services to save money. My dad taught me that only spending what you need to spend is wise, however he also said that if you go so cheap that in the long run it costs you more or cause you more headaches then really you were just stupid instead of wise.

How to drain a g port of a GJ tube

I am on several feeding tube pages and see this question asked frequently, so I figured I would write out what we do...

First off we do it differently for Jillian and Lydia. This is because of their needs. Jilli only needs to be drained overnight. We don't get much out most days but she sleeps worse and vomits if she is not drained overnight so even though it is a really small amount it makes a big difference for her. Lydia on the other hand must be drained 24/7 otherwise she vomits. She can not handle anything in her stomach.

What is draining? Draining the g port of a GJ tube drains the stomach contents out of the stomach. Some kids with a gj tube never need it, some only sometimes and others all of the time. You should NEVER drain a J port. Also talk to a doctor before you start draining, because of how much Lydia drains in a day we give her Pedialyte to replace electrolytes she looses, because Jillian drains so little we don't have to do that.  

How do we drain?

Jillian: We use a urine leg bag to drain her into. This makes it easier to measure and drains slower then it does to open air. For Jillian this works. We connect the leg bag to a bolus extension and then the extension to her g port. Just always double check that the drainage bag is closed... otherwise you might get the fun of stepping in a pile of stomach goo...

Lydia: Lydia doesn't do as well draining to a leg bag so she drains into a diaper. We still use the bolus extension just because it is handy to only have one kind of g extension but any of the g extensions would work fine. We tightly wrap the diaper around the tube and then connect the tube to the g port. We change the diaper a few times a day depending on how full it gets. While most of our insurance companies have covered the leg bags Jillian uses (our DME says our current insurance company does not have a billing code so they can't bill for them so we can't currently get them) however diapers are not covered by insurance for this purpose. I laughed because when Lydia first started draining into preemie diapers there was typically one to two packs on the shelf at our Target and now they have seemed to up their order... I think we are skewing the preemie diaper market in our area! We go between 3-8 preemie diapers a day! 

Urine leg bag and an AMT bolus extension for g port of G-Jet feeding tube

Happy Birthday Lydia and life updates

Happy 1st birthday Lydia!

Its hard to believe you are 1 already but yet at the same times it feels like you have been a part of our family forever.

It's been an interesting year. From you joining the feeding tube club to GI bleeds and all sorts of interesting things... you know how to keep us on our toes! You are full of spunk and determination.

You are still my cuddle girl. Your favorite place is to nap on me, that has not changed this year. Although after 10pm its daddy you want to get you to sleep, although sleeping though the night every night is still not your thing.

You love to wave bye-bye and clap your hands. You are learning to blow kisses. You pull up to stand next to the furniture and you love to try to get Jilli's pulse ox. You hate being alone and would rather see people you know then play by yourself. You like to say the world "yea" especially after we tell you no. You also love to shake your head yes and think you are so funny doing it! You like to pull to stand and then let go and you love playing with empty water bottles.

We love you baby girl!

This past week we have been back in the full swing of 3 days a week therapy. Jilli is getting closer to her baseline each day. That trip to Disney really helped her. I worked the past couple of days and figured out our therapy days, RMH/CHW days, and other things that need to be done this summer. Its going to be a busy one!

We got the call that Jilli's surgery is August 8th. They pushed it back because if it is later in the summer then GI has agreed to do her EGD at the same time meaning she doesn't need to go into surgery twice in a short time which makes me happy. I am hoping her ears hold out and drain ok between now and then but at least we have a date to make it better. We are still waiting to hear from GI scheduling because we are hoping to do Lydia's yearly EGD the same week. Hopefully that all works out! We are also still waiting to hear from pulmonology to hear if they are wanting to join in for either girls however Special Needs has contacted them multiple times and they are not getting back to anyone which is really annoying me!

Jillian's request for a wheelchair has gone to the state and the state has sent back questions asking why she needs it and such. Jillian's PT and OT are writing a letter to the state to answer all of their questions. I am still waiting on a couple of letters from doctors to send to our primary insurance company. This whole process is so frustrating! Last I heard our primary is still not returning the phone calls of our rehab doctor for the peer to peer review despite her calling multiple times.  I am hoping the state comes through, if not I guess we will look into other funding options. I know below you will see pics of Jilli in a wheelchair... this is a chair that is currently on loan from a lending closet however it is not properly fitted to her and does not included the power part so we are only able to bring it places where I am able to push her for long distances (ie it doesn't work for going to the store where i need to push a cart) because she does not have the arm strength to push herself through a store. She can propell herself for short distances but for many everyday things it is not the right chair for her, this is why she needs the chair we are trying to order.

We are headed to RMH soon for appointments so Brent looked at the RMH meal calendar the other day an noticed that there is no one signed up to sever any meals from July 1-3rd and since we had not decided what we were doing that weekend yet we thought this is the perfect answer so we are going to serve dinner on the 1st. If you are interested in joining let me know! Being there for holiday weekends is not what anyone dreams of but if we can help make it easier for others then lets do it!

The state sent this week that they had forgotten to give us some of the paperwork to fill out for Jilli's Katie Beckett review so I did that quick and got it in the mail. Hopefully they process all of that quickly!

I have also started working on stuff for Team Jilli & Lydia... click here for more info

We have also been helping with things for the accessible playground in Lake Geneva! We got to tell a film crew last weekend why this is important to our family. If you want more info on the project or to donate please check out the never say never playland facebook page or website. Jilli asks me all of the time when she will have a playground near her house that will be safe for her and to make that happen we need funds and hands! Jilli personally would like a few more ramps sponsored off the sponsorship list, they are $500 and there are still several left to be sponsored, there are also fence posts for $50... both help to get the playground built!

I want to give a HUGE THANK YOU to everyone who helped with the meal train Kaet set up for us and brought us food or sent us gifts cards! Thank you so much. I am normally someone who likes to write out thank you notes but life has been rather crazy so I hope you all will accept my apology for not writing them, but we truly are so grateful and so touched by your kindness!

This week is a typical therapy week and then we have special guests coming next weekend!

Lydia and baby dolls

My children are in love with pineapple clothing, they don't like any other clothing with food on it but pineapple stuff is exciting to Jilli right now, she even gave up getting a pair of pajamas she wanted so she could buy this outfit for her sister

Jilli playing with her doll. I love how she put her medical stuff in a bucket to make it easier to cary!

The girls get so excited when he comes home from work

this is how Jilli talks to film crews!

Lydia in her birthday gift!

Nate and Jilli on the mary go round... this is what Jilli wants most at the park by our house!

Nate and Lydia. Those two really love each other. We kept asking her that morning who she wanted to come to her birthday party and for everyone but Nate she would just look at us but for Nate she would shake her head yes and say "yeah!"

Jilli pulling Lydia

playing in PT

We watch a vloger called Justin Scarred... he does a lot of Disney and Disney history but right now he is driving down Route 66 and Jilli is loving watching it. For Jilli, driving down Route 66 isn't a good option right now, but watching Justin's videos brings it to her. She has a backpack on her shoulder and she is pretending to travel down Route 66 too!

I lost this binder this week... like tore the house apart lost it... yes is might be a super clearance plain white binder but inside in my address book and lots of important notes and such... thankfully it was found but it was a long day searching for it! 

She loves her daddy!

Jilli fell in PT this week. She always climbs up on a chair to get hand sanitizer when she gets there. Getting on and off chairs safely has been one of her goals. She has been doing this for a long time but this time they had switched chairs and this one didn't have the same handle on it. She reached over and fell off the chair and landed with her head in the garbage can and her leg braces stuck in the handle of the chair. She is fine but got a nice fat lip and cut the lip open in three places. It sure did bleed but she is fine!

Lydia refused to play with this at home so we brought it to PT and she thinks it is cool there. Silly girl. Thank you Matt for buying her a toy she will push at home, we are really thankful and she loves her car!

Jilli wanted to buy Lydia a birthday gift so I brought her to the store. She picked out a baby laptop because Jilli loves her toy laptop and she thought they could play with them together and that Lydia would like it since she likes hers.

Jilli at Betty Brinn

Wheelchairs don't stop you from building lol

Lydia loved these plastic rocks!

Start of June

We had a really nice weekend at RMH. Saturday morning we hung out and played. Saturday evening Total Mechanical (a sponsor of RMH) invited Nate's family, Caroline's family and our family to a Brewers game. We had a great time! We were in a box which was perfect for the kids with their temperature regulation issues. They also had dinner for us. The Brewers sent up bags with neck pillows, and a puzzle for the kids. It was a great time hanging out with friends.

Sunday morning we went to church and then headed back to RMH and hung out with Nate's family. It was a relaxing day.

Monday Jilli had ENT. Jilli has been struggling with hearing. This has been off and on since she was born. The problem is that sometimes her hearing test catches it and other times it does not. Her MRI showed signs of frequent fluid in her ear. This is likely what the problem is, that she frequently has fluid in there that is not clearing. It is not always getting infected but is impacting her hearing. The NP came in first and asked why we were there and I explained everything and said that even if her ears are not always infected her hearing is being impacted at times and we need a plan. She looked in her ears and said they were fine. Then the doctor walked in (who we have seen before) and said she couldn't see the ear drum through all the wax. She cleaned the wax out of the one ear and said that there was a puss sack on the ear drum. The other ear she cleaned out but still couldn't get a good look at the ear drum. She asked if I was ok with ear tubes, I said yes, we need to do something. She also put Jilli on an antibiotic to try to help with the infection. Jilli never even complained about her ears so I wonder how often they are infected and we are missing it! I told the dr that I would check to see if anyone else wanted in the surgery as well. Jilli has been in the OR 7 times already. We try to keep that as low as possible so when we can we try to get other dr in the OR at the same time. Jilli normally has an EGD once a year so the ENT sent her a message to see if she wanted to do one of those at the same time. The ENT is a good team player and I appreciate that. We are still waiting to hear if anyone else will be joining in the OR. Special Needs spent everyone on her team a message letting them know so hopefully they get back to us soon because we need to get the surgery scheduled. Monday night we headed back home.

Tuesday Jilli had OT. Her OT did some cross stitch with her and she loved it. It is good for had strength. We ran to Target to pick up a couple of things and then headed home. A friend from MOPs brought over dinner for us. Brent came home from work early because his stomach hurt. He ended up napping on the couch which is not like him at all.

Yesterday I got my tooth fixed. The day before we left for RMH I dislocated my jaw and it came down wrong and broke the filling out of my tooth. Thankfully the dentist was able to fix it yesterday. I really love my new dentist! Yesterday you could tell Jilli didn't feel great... the whining, oh the whining! By the time Brent got done with work this mom was exhausted! We went to Qdoba for dinner and then ran a couple of errands. It was nice to just be out of the house without medical things. Today we ran to Kohls (we are having family pics and Lydia's one year pics done this weekend) and now we are home.

So right now we are just waiting for a surgery date. We are also celebrating Lydia's birthday this weekend. Now that it is finally getting nice out we are hoping to start on some house projects too. There is always lots to do, so I am enjoying this moment of blogging while Lydia naps in my arms

Jilli and Caroline snuggling watching Paw Patrol

Jilli's favorite part of the day... the racing Sausages

if you dont eat on plates might as well color on them!

First time Jilli has been able to write her name clearly since good Friday

We got this book at Disney... it is an Elana book with a wheelchair in it

Why sit correctly in a high chair when you could sit Lydia's way!?