My big girl

I'm really frustrated tonight and just want to jump up and down and yell about how unfair a situation is and how I feel like I keep praying for guidance in a situation and all I am getting is a maze which led to another unplanned clinic visit today that left us with less answers.

So instead of jumping up and down and yelling I am going to choose to refocus at this moment because yelling isn't going to get me anywhere right now, I've contacted the people I need to that are involved in the situation and just need to wait until tomorrow before any more can be done...

So....

tonight I am going to brag about my big girl!


I am so proud of  her. I am so proud of how she works at things.


Sunday morning she woke up and her bed was wet from sweat and pee. This is common in our house... we should buy stock in character sheets... so while I was getting Lydia ready for church Jillian decided to take care of the situation for herself. She took the wet sheets off and figured out how to put a new protective cover on and a fitted sheet which is not easy because she has a Comfy Lift bed which is a specialized bed that is not flat. She worked so hard and figured it out.

She also has been working hard at changing her own diaper if it only has pee in it. She doesn't feel when she pees so I remind her every few hours to change her diaper and she takes care of changing it. She is also working on getting her leg braces on by herself and then I help her get her shoes on.

I am so proud of how she is working for independence. It is not that these tasks are easy for her but she has self determination to try her best.

Next week she starts kindergarten. That just seems crazy but she is so excited. I think I am ready. I have been busy lesson planning and getting things together and she has started working on setting her self motivated goals for the school year.

Kindergarten feels like a huge milestone in her life. I am sure I will be a mess on Tuesday but I am so proud of her.

She has also been working hard in speech since she started. It is not easy for her but she is trying so hard. This week we are working on trying a few iPAd apps to help with times when she can not talk. Hopefully we find one that works for her.

My big girl is growing up! She says such grown up things now. She has also started telling us all of the time that we are the best. That girl knows how to encourage people in ways I have not seen before. It is a gift of hers.

So there is my brag for the night!

We are still raising money for the Children's Hospital Run/walk. You only have a couple more weeks to donate and we are way behind on our goal. Click HERE to donate. This money goes to services that directly impact the girls and so many kiddos we love.

She decided to wear a crown to lunch the other day

Jilli in her made bed

Jilli tonight... she played a toy guitar to sing a goodnight song to her American Girl doll. It was the sweetest thing. She said before she could go to bed she needed to be a good momma and put her doll to bed. It was sweet

Always on alert

As I was packing up the car for an unexpected trip to chw this week I was thinking about how in our lives you are always on alert, always waiting for the next shoe to drop because the reality is that the other shoe is going to drop... this isn't just being over alert, its being realistic. You can't let every hiccup in the road send you spiraling in panic so you end up living in a space of always a little bit on edge. I know at any second we are only a minute away from needing to head to the ER.

Lydia decided to be the interesting one this week. Since her tube change three weeks ago she has been experiencing pain  in her stomach that will cause her to double over in pain for a minute but then she would go back to playing. Monday I checked in with special needs about and we were watching it.

Wednesday morning when I changed Lydia's pad I noticed our problem. Lydia had a little spot the never closed when she went from a 16fr tube to a 14fr tube however that little spot had not caused any issues so we were not worried about it, however suddenly that spot had grown from a couple mm to a half inch to inch in length and was curved. It wasn't just surface level but was deep all the way thru.

I called the team and made a plan. We had been invited to a handprint ceremony for a new location the hospital is building closer to us (a closer walk in that will see my kids!!!!) so we went to that and then headed to our team up at the main campus.

They diagnosed it as a tube site cleft and they put silver nitrate in the cleft to see if that will help close it up. Lydia has been sore off and on since. She is guarding it some but in typical Lydia fashion you wouldn't know there was a problem unless you knew her. The craziest thing was she has slept thru the night the last two nights! She had not done that in over a month and last week never made it to her own bed because she was awake so much during the night. I am hoping that maybe this was our problem with the sleeping!? Lydia has never been a good sleeper so I am just happy for two nights of sleep!

Jilli also saw ENT this week and we are watching things for now and if she has any more infections we will put ear tubes back in (the second tube is very close to falling out).

What I have learned is to try to balance the living on edge. If you let it consume your mind you live in a state of panic and then as soon as the issue happens you are spiraling and can not think clearly to do the steps you need to for your child. However as a complex parent if you don't prepare for issues then you are trying to start from behind. Its the balance. Its having things ready if you need them but not being panicked. And just accepting that it is what it is... crazy is going to happen and if you let it overwhelm you with every little thing it will, but understanding that it is going to happen gives you grounding to stand in the midst of it.


Wednesday August 29th is the LAST DAY to sign up to walk or run with Team Jilli and Lydia. We would still love to have more people join us! We are still trying to raise $2,450 for the walk to help with funding for things that are very importaint to us. If you have any fundraising ideas let me know! To donate or join the team CLICK HERE

Speech again

Yesterday Jilli had a re-eval for speech. Jilli was in speech from about a year and a half til she was 3 but then was on track so she was discharged. We knew there was a chance she would need speech again later.

A last month we were at Shriners and they suggested we go see someone in that area that helps with breathing exercises. We looked into it but this person had a long wait list and you had to pay out of pocket as they don't take insurance. We also discussed it with our therapy team and several people on our team have taken classes from this person and they felt like this person wouldn't be a good fit for Jilli. However because multiple people on our team have taken classes from this person they decided that we could implement some of her ideas into therapy.

Around the same time Lydia's speech path had come to me and asked if I was ok with them re-evaluating Jilli for speech. She said in watching Jilli around therapy that she was noticing how hard it was for others to understand her. Those of us who are with her all of the time understand her pretty well so I was not noticing it as much however as someone who didn't know Jilli well she was seeing it. We agreed to a speech eval and scheduled it for yesterday because Jilli was discharged from OT last week so she had an open slot during the time we are there for therapy.

Lydia's speech path was there (who will be doing Jilli's therapy too) and another therapist came in too to help with the eval... a speech path and works with kids on the breathing aspect of speech. I am so thankful that they brought this second person in for another set of eyes and helpful ideas.

What yesterday showed is that Jilli's rib cage does not move when she talks and her diaphragm moves very limitedly... she is making her speech sounds with whatever air she can get into her throat. I mentioned at the end that Jilli's chest x-rays show that her lungs don't open all the way and that is isn't uncommon for little parts of her lungs to be collapsed. They said after the speech eval that doesn't surprise them at all. If Jilli is trying to blow a whistle or bubbles she retracts significantly.

The other thing they noticed was how hard Jilli is working to compensate for the lack of lung movement. They said that her core while it is floppy, she is holding it in specific ways to make it easier to breathe. She would get vary irritated when they tried to break her set ways because it make it harder for her to breathe. They noticed how hard her body is working at posture just to keep her lungs open that it is effecting everything else she does. They said that her tongue coming out while she is concentrating is a way she is trying to stabilize her core. They said she is really smart in figuring out ways to compensate and her body has figured out many ways however they are not all ways that benefit everything that she does.  They said many kids just wouldn't try so hard to compensate but she works hard at it all day every day. They said it is taking more work to keep her lungs open then we thought and that if she had not been compensating that we would be in even bigger trouble however her compensation is effecting how much she is able to use her brain for other things and it is largely effecting her speech.

So Jilli starts weekly speech next week. They also gave us some tips. When Jilli need to concentrate and work she needs to have her body supported. They were so happy to hear that we have the Special Tomato seat at home to help her with school times. As much as she wants to do everything all by herself we are learning that she needs more support because it is taking too much out of her body to compensate. We are trying to talk to her more about how cool her purple chair is. Also if she is in public and she needs to use her brain that she should be in her wheelchair so it can best support her body. She thinks she can just compensate but it is really taking more of a hit to her body.

Its hard because we thought we were working some to build core but once we had someone look at it from a lung standpoint we realized how this is effecting her cognitively because too much work is going into her holding her body just so. So when she is playing in her play area she can sit on her wobble stool to help with building some core, but otherwise she needs to be more supported. It feels like a step backwards however in reality it is not, this will free her brain up to be able to learn more. Its also a good idea of how much her lungs are actually struggling every day... while her compensating skills are working for now her body will only be able to do that for so long.

We are also going to start her on the journey to find the right augmented communication device for her. When she has her crashes she looses the ability to talk but also later in the day it can be hard for her to talk once her muscles are too tired so this will hopefully help.






The Briggs and Al's run and walk is ONE MONTH away!!! Time is flying!!!
We are still looking for at least 17 more people to join our team to either walk, run or virtually participate on September 15th. To participate on our team you must sign up by August 30th.
We have currently raised 15% of our goal of $3,000. We participate in this event as a way to give back to a place that gives so much to us. Money raised during this event goes to supporting the special needs program, expressive therapies and the big research project that genetics is currently doing about our girls. All of those are things that insurance does not pay for.... so here is a time as a community we are able to step up and help fund those things. I am not sure why but fundraising this year has been a lot harder then it has been in past years but we are hopeful that this next month that people will donate. CLICK HERE to join Team Jilli and Lydia. 

Part of my assumption with the harder time with donations is Facebook. I have had several people say lately that they are not seeing when I post blog posts or anything about the run/walk and that lines up with donations and page views. If you want to be notified of every time I post an update about the girls there is a couple of different ways to be notified about a new post... either by becoming a blog follower or by getting an email letting you know there is a new post... I believe to sign up you must be on the desktop view of the blog. Sadly I have no control over Facebook algorithms however if you are wanting to see all of the posts that is a way to work around Facebook. 

 

Graciously accepting

Monday we went to the Madison Children's Museum with Jilli's friend Grace from RMH. It was so fun to meet up with them and play and hang out. I think that is the longest we have spent at the museum, the kids all had such a good time! Grace's mom and I have a lot in common and it was nice to get to talk.
After we were done playing we grabbed some lunch at the little pizza stand at the museum and Grace's grandma offered to pay for my meal... I did the typical asking twice if she was sure and Grace's mom commented that my best option was to just graciously accept otherwise we would be there all day. So I did.

This reminded me that graciously accepting has been one of the lessons I have been learning a lot lately.

At least in the part of the society that I am in, taking things shows weakness. If you take something offered without trying to turn it down multiple times you are seen as a person who is selfish.

Match that with social justice philanthropy me and you have a mess of me thinking that its bad if I accept help. I am all for helping fund raise for someone else or helping with an event, or speaking for somewhere to raise them money... as long as it helps someone else. It almost took friends of mine setting up the fundraiser for Jilli's chair last year because I was being stubborn. 

I struggled with this with Katie Beckett... we were drowning in medical bills before I would accept help. I have struggled with this when people have been kind to us, often thinking that someone else needs the kindness more... that we will pull ourselves up by our bootstraps and figure ourselves out but that maybe someone else is having a harder time and I wouldn't want them to not be helped. As I wrote that sentence that thought came to mind of how little I must think of God if I don't think that he could provide for others and me.... ouch!

When you boil it down its a mix of social pressure (just scroll through Facebook and you can see how often families like mine are called lazy by a political party and you will understand the pressure not to take help from anyone otherwise you are called names) and pride.

And its my choice to decide if I am going to let social messes and pride stand in the way... or if I am going to sit and complain about things while not accepting the gift God is trying to give me in the situation.

The even bigger place I am learning this lesson right now is with a meeting we had last night.

Back in June we had a really long day... Lydia had surgery and Jilli had an ER visit and both kids ended up admitted at the same time. The day was one of our biggest worries before having Lydia... what if we had two kids in the hospital at the same time... how would we handle that?!

While the crazy of all of that was going on our special needs nurse came to talk to me so we could make some logistics plans for how to make the day go as smoothly as possible and at the end of our meeting she asked me if I was finally ready for them to put in the referral for Jillian's Make A Wish.

This is not the first time that someone has talked to us about Make A Wish... but I have turned it down every time before siting that I was sure someone else needed a wish more and to spend the funds on them. I would always say that we would figure out the means of happy experiences for the girls, but to be honest by the help of my parents for our Disney trips.

Well in that OR waiting room I was at one of my most stretched thin times and one of the times I have felt most helpless in life. I needed to wait for Lydia in surgery but there was nothing I could do to help and I couldn't be with Jilli in the ER. So when the nurse asked I didn't have it in me to let my pride or social worries get in the way... I finally said yes to the referral.

We got a call a few weeks ago from Make A Wish (maw) that Jilli qualified and that someone would be coming over for a meeting to talk with us. We talked to Jilli and explained to her what a wish was and started asking her what she might like to do. Jilli has been struggling with decision making so we knew that we needed to give her time to think before the meeting.

When we asked her first if she could do anything in the world what would it be... she said to go to Ronald McDonald House... I told her that we do that often, she gets to think even bigger for her wish. She thought for a while and then said that she wants to swim in the monorail pool at Disneyland at the Disneyland Hotel.

We don't have cable so our main form of entertainment in Youtube and Jilli loves to watch vloggers... One of her favorites, Justin Scarred lives by Disneyland and goes there often and she loves to watch his adventures. We also watch Disunplugged and she loves to watch their overview video about the Disneyland Hotel and she has said for many years that she has wanted to swim in the monorail pool. We are headed to Disney World in December with my parents for Jilli's birthday but none of us have been to Disneyland before.

So last night we had Jilli's maw meeting at our house. They brought her safe balloons and a bag of princess toys. They brought princess cupcakes and I was so proud of how Jilli thanked them for bringing cupcakes but kindly turned down eating them... she didn't make them feel bad for bringing the cupcakes and I was really proud of how she handled the situation.

They talked to Jilli for a while about what she likes and her favorite things... and then they asked Jilli what her wish was and she told them to swim in the monorail pool. We looked at pictures of the monorail pool and they asked her if there was additional things she might like to do while at Disneyland. I think she might love the Cars area since she loves Route 66 so much (that is another love thanks to vlogs). She said she would love a make over. I am hoping that by any chance that one of the vloggers she loves just might happen to be in the parks while we are there, I can only image her face if we ran into one of them.

Jilli had such a big smile on while they were here. We have asked for travel dates after NIH to give Jilli something to look forward to after NIH and all of the tests they will be doing.

The past few weeks I have had to remind myself that its ok to accept this. There is a part of me that still says that other people need wishes more, but then I look at my sweet girl and see how excited she is about this. Its also hard to accept that you qualify for a wish.

We will find out in a month or two if they are able to grant this wish and then the planning starts! I was searching Amazon last night for Disneyland guide books because we haven't been there before and it is different the Disneyworld... and Jillian LOVES guide books and catalogs.

So let the adventure begin!

Last night was also a reminder about why we need to do what we are doing today... Today Jilli is being evaluated again to start speech. As her mom I understand her well and was not seeing the delay however Lydia's speech path came to me a while ago and asked if I was ok with an eval. Jilli was dismissed from OT last week so this is the perfect time to have speech start. Last night they had to ask me a lot what Jilli was saying so I am hopeful speech is able to help her because she has so many great things to say that I want her to be able to effectively communicate. 

We are still raising money for the Briggs and Als Run/walk for the Children's Hospital. The last day to sign up to be a part of our  team is August 30th!!!! The last day to donate is September 14th. We are still a long ways off from all of our goals CLICK HERE to donate or sign up. You do not need to physically be there for the walk, you can sign up to be a virtual participant

The most Beautiful Thing I've Seen

I started reading the book The Most Beautiful Thing I've Seen earlier in the week... for a self proclaimed non reader I'm 143 pages in already in less then a week... for someone who a year ago didn't remember the last book they actually finished this book is worth my time.

The book is written by Lisa Gungor of the band Gungor... I have felt a connection to that band since I heard the story behind Beautiful Things (click HERE to read about my connection) and while the band has taken some heat in the Evangelical world, that didn't matter to me, there story touched me and helped me though a hard time.

I was listening to Relevant a while back and they interviewed Lisa about her new book and by the interview's end I knew I wanted to read that book (click HERE to listen to the pod cast ).

I picked it up last weekend as stared diving in and have found myself intentionally carving out time to read it. My mom and I had a long conversation about the first half of the book (I joked that I doubt Lifeway will sell it... a quick Google search sadly proves me right) but mom and I have talked a lot lately about de constructing and reconstructing faith... moving past Sunday school answers... moving past safe to real faith. I am realizing more and more that what feels most unpalatable to me about the American church is the lack of depth, but that I play into that too, because Sunday School answers feels safe... there are stickers, good jobs, and only surface relationships. My heart craves for more... yet I run to safe, yet yearn for conversations deeper then fine. (Now the Switchfoot song More Than Fine is playing in my head) This book has been a look at deeper then fine, it has depth and rawness to it... she states whats hard for her without people saying she is whining... I've really struggled lately with letting anyone in past "fine," part of it is some recent hurt in that area... part of that is I find if I tell people what is going on in life that if it is not all sunshine and rainbows then you are seen as negative when all you are doing is stating facts about life, and then I close up because if someone can't deal with me saying a doctors appointment was hard how are they going to deal when I state that a genetics appointment rocked me to my core and made me ask a lot of questions about God that I have never felt safe asking... Sunday School answers and my questions don't mesh nicely together... it starts to feel like the world is living on surface level and I am over here debating the guts of life... that my option to stay at surface level left a while ago (I was there... I get how safe that feels, when my college friends started asking questions that didn't have Sunday School answers I was SO uncomfortable... and I was the Bible study leader!).

Tonight I am probably in a more emotional place then normal... we just got home after 8 days at rmh, I am pretty positive I have an ovarian cyst (I've had many of them in my life, I know very well what they feel like... I took something for pain... I never take stuff for pain)... and last night was scary.





"Two nurses came to take her. They smiled at me and worked so swiftly I realized how often they do this sort of thing. Handing her over to a stranger to cut her open was hell. I gave up all control and was left only to wait. How would I wait? How would I stand here and open my hands this way? I followed as they walked down the hall, then the nurses went through the double doors. The doors closed too fast and hard, and I just stood there looked at my blurry reflection in the stainless steel. I couldn't believe that reflection was me. I couldn't believe I was here and my girl would be opened up on a hospital bed without me by her side for comfort or to hold her if she had her last moments in this world. Strangers weren't supposed to be there if that happened. It was supposed to be me holding her, lettiner her know she was loved. I felt helpless."
"And I'm beginning to see that I am the sick and she is the healing"

-Excerpts from "The Most Beautiful Thing I've Seen"

Those excerpts brought tears to my eyes. I sat here thinking about all of our surgeries... all 11 of them between the two kids and the talk of another one soon for new ear tubes. I started to question the tears... I know what she is talking about, I HATE the one hallway at the hospital, last time I walked it alone, I felt like I needed to be strong, I've done it enough times I don't need anyone to show me the way to the waiting room, I think I more had a angry look, its the only way I could hold back tears. But sometimes in my head I feel like I should be good at this all by this point. I so often feel like I have to be the strong one in all of this... strong to support family and friends... strong to support the diablities community... strong to support the random stranger who asks me repeatedly if the girls are going to "be alright"... whatever the crap that even means... that just leaves me perplex on what to say... how is it my job to comfort strangers about my kids health?!

 I thought as I read about how none of our surgeries have been big surgeries... sure my kids are each sleeping hooked up to multiple things right now but I've sat with a friend while their kid was in brain surgery, we haven't had surgery like that, why is this excerpt getting to me?! 

And then I remembered how last night was hard and I really just haven't dealt with that. Both girls had their gj tubes changed on Monday late afternoon. That is done in IR and we stay at rmh for 24hr after to make sure all is well. We do this every three months. While this is normal for my kids, Lydia walked right up to the table herself this time, neither or them cried at all, the most fuss either of them made was Jilli said once that this wasn't what she wanted to do, but then she went back to playing youtube on my phone... it can be a little hard on their bodies having something that is 22cm long pulled out and put back in. 

Tuesday both girls had a great day. My mom came up to rmh and the girls got to take part in the fare at the hospital which they loved! One of the managers at rmh asked if we were leaving Tuesday night or just heading out early Wednesday morning. By Tuesday night I was tired... I wanted my own bed, my own coffee and as much as rmh is amazing, communal living is just an interesting thing. We have great friends at rmh and Jilli was loving being there. The staff was amazing as always and they even made Jilli a little manager sign and let her help them. Jilli thanked me Tuesday afternoon for giving her one of the best rmh trips ever. I was still ready to just head home. I knew my to do list... I know in my head I feel like a constant state of feeling bad at rmh that I am not getting stuff at home done and then getting home and feeling like a failure because the house is never clean to my standards and the standards I feel the world has for a house. It leaves me in this perpetual state of wanting to be home to clean and run away from the mess. 

So we decided to head home Tuesday night after Jilli did a little art therapy. Jilli complained while we were checking out that her stomach hurt but we thought that might be due to her not wanting to leave her friend. We packed up the car and headed out. Lydia fell asleep shortly into the drive and Jilli complained about my choice to listen to a podcast but spent most of the time looking out her window but as we got closer to home she started crying off and on that her stomach hurt. 

We pulled in the driveway and Lydia woke up so I brought her in the house first. Jilli was mad at me that I wasn't bringing her in first. I then brought Jilli in and she curled up on the stair crying that her stomach hurt. I got a few things in the house and then helped her upstairs. We changed her diaper and worked on getting a show on for her and she was crying off and on but then she started crying really hard. I asked her to show me where it hurt and she pointed about a half inch below her tube. I took her pad and belt off and I touched the spot and she jumped... I've never seen her jump like that before. She was now screaming with her legs bent up (like the inverted fetal position). Brent got home and ran upstairs when he heard her. She wouldn't let him touch it. I called my friend Stacy to have someone to talk to who wasn't having a child screaming at them to get some clarity and we both agreed that it was hospital time. I started to dial the phone to call our team and Jilli passed the largest amount of gas and stopped crying. She said it still hurt but not as bad and she went to sleep. I laid there standing looking at her watching the pulse ox. We decided to wait, they were not going to do anything in the ER now. About an hour later she started crying again and more gas passed and then went back to sleep. 

I laid in bed. Questioning so many choices. Should we have stayed at rmh? Was I the most selfish person every for coming home? We stayed our 24 hours after (and even a couple more) and she was fine but now she is questionable. I pushed for the tube brand she had put in, was this my fault?! 

My biggest fear was a perforated intestine... that is always a risk with the type of tube the girls have. A tube change out is normally normal to us but now I was laying in fear. Had I made all the wrong choices? 

Thankfully she slept the rest of the night (I slept with an ear open and felt less then rested this morning) 

She pooped during the night... both kids did. Both kids have pooped 5 times today! That is crazy in their world unless they are sick. Now I am racking my brain to past tube changes and I think a few times they have caused them to poop a little extra after... they are messing around in the small intestine. 

But this also brings a surgery weight up... there is some discussion going on about a different tube surgery for the girls. One we know will happen at some point but we are praying for guidance and direction on timing. We are trying to figure out if now is the time to go forward with this surgery or if we push it off but there are some factors that might be pushing our hand a bit on it. I feel like it is a big decision, one with gray clarity. One I just want to make sure we are making the right choice at the right time. 

So the surgery part kicked me tonight. I was planning to go to sleep hours ago but here I sit still typing. 

This book goes on my recommended list... I know I'm not finished yet... but it has already been such a good book for the season I am in right now and I am so thankful for it!