Sunday, July 22, 2018

This isn't how I thought this would feel

I will be honest... I have been in a funk since Tuesday. I walked into that room expecting nothing... I walked in assuming I would be crying as I walked back because they would tell me once again that they didn't know how to help... I have walked that walk so many times after genetics appointments. So many appointments that I had so much hope wrapped up in. So much fighting.
I don't think people newer to our journey understand how much of a fight Jilli's first year of life was. It was hard. It was a lot of fight for people to listen... I was told a lot that I was a first time mom (never mind that child development degree I have). I stopped sleeping for a while out of fear of Jilli vomiting in her sleep and choke and that by the time I would wake up it would be too late (mind you Jilli would vomit across the room in her sleep and start gasping for air, this wasn't an irrational fear). I kept getting told that she would grow out of all of her feeding issues (remember her NG tubes was placed and I was told it would be out in 2 weeks) and that she was cute and cute kids like her don't have genetic disorders (we don't see that doctor anymore and isn't employed anywhere that we get care but man I would love to call him right now...). I kept saying Jilli needed help but I kept being told I was over reacting (everyone on our team now says I wasn't over reacting and was wise and a dam good thing I was her advocate) but I laid awake many nights wondering if I was over reacting.

I have shared before that our prayer for the girls has always been that God use them for His glory. I would need to write a book to tell you all of the ways that has occurred and yet I still love the quote that says that God is always doing 1,000s of things in our lives at a time... we are just lucky if we have open enough eyes to notice 2 of them. There are so many things that He has orchestrated together that I will never know... and thats ok because it is not all about me.

We made a choice a long time ago after discussions between Brent and I that our prayer wasn't going to be for a diagnosis or cure but that God showed us the next step... but that came after a lot of heartbreak... that mind shift came after a lot of prayers that were not answered my way. That came after a lot of tears in the skywalk. I we realized that we couldn't live our life focused on a diagnosis because then we missed God in the every day and we missed what God was doing right then (side note, I was listening to That Sounds Fun podcast today, the episode with Ally Fallon and talked about that if our eyes are focused on other things then we make unwise choices chasing after those things... go listen ☺)

So for the last several years a diagnosis has not been our driving force in life... taking the next step has been. This is big for planner me who likes to have every step all planned out. I like to know what each day will look like.

So Tuesday felt a little jarring. It was just taking the next step like we have been... but this felt like a huge step... like the goal step for many people.

I honestly have felt overwhelmed that we are now at this step. A step I thought of years we desperately needed now feels sudden.

I feel though like feeling like it is sudden and feeling overwhelmed by it isn't how the world expects me to feel and so I have kind of shut down the past week. I feel like the world expects me to party right now while I am just standing here looking at a really big step we are taking feeling overwhelmed. I feel like the world would see this as a time to run faster ahead while I stand here nervous.

Part of it is that we have gone down many rabbit holes in the past 5 years. I was sure they would either have fixed whatever was going on or had a diagnosis for us by Jilli's first birthday. There has been a lot of frustration and heartbreak. And there was a lot of freedom in letting the control go of my expectations of a timeline. Honestly this all feels heavy right now like it use to but in a way that it hasn't for a long time. Maybe having a diagnosis is digging up a lot of hurts from this process and this feels very raw right now.

I rather suck at having grace with myself. I am a person who replays conversations over and over in my head. It am a person who sees aspects of my life that I feel like I should have together and don't and I struggle to have grace with myself in those areas. Brent was working on the bathroom yesterday and I was cleaning and putting stuff away from RMH and I said something about something needing to get taken care of and he mentioned how he didn't understand why that was such a big deal to me and I said that in my mind when everything else is chaos that I should at least be able to have that area off life under control. He laughed and reminded me that I have less control over the world then I like to think.
I am a person that doesn't like others to see that I don't have all of my ducks in a row. I am also a person who sucks at asking for help or accepting help (thanks for the side eyes during the sermon today mom). I like to look like I got it all. We are not a society that likes to look weak nor are we a society that values interdependence. There are noble things to struggle with but everything else you should just be able to handle. 

Today I don't have it all together.

Today I feel so many emotions. And now for some reason typing that sentence made those emotions decide they needed to well up in my eyes.

So instead of listing the three bullet points of ways you can pray for us right now... I am going to ask for grace. Grace while we process. Grace while I am sure these emotions don't make sense to people who are not in our shoes. Grace for the moments we feel like talking and the moments when we can't make words. Grace for the fact I have really been random at answering any communication at the moment... please don't take that personally... I am soaking it all in, know I see kindness and I am so thankful and if I don't respond to a text or message I am not mad or ignoring you, I just can't at the moment but know I am thankful for you and will likely remember your message at an odd time... most of Tuesday I didn't remember who I had talked to and who I had not and realized days later I had never responded to some people... but I ask for grace that people keep talking... keep loving us even in our mess. Keep being there.

I am also trying hard to not rush through feelings. I am really bad at that. I leave myself half a second to feel something and then feel like I shouldn't have feelings anymore... and while it is healthy not to live in a place of despair its also not healthy to not let yourself feel. I feel like since this conversation happened on Tuesday that by today I am not allowed to have any more feelings about it... that I need to be totally fine and should just be able to talk about it all in facts and logic today and I am frustrated that I have feelings and emotions... but I am trying to acknowledge those feelings because if I just push them away they don't go away. I am watching myself try to do that with this week... we have down time this week and I am finding myself trying to fill it because then I wont have to deal with some of the hard things... I can run away from the house work that feels overwhelming or the other things on my to do list... but I am having to remind myself that running away doesn't solve issues... I need to walk through this because walking through this is helping me learn lessons for the next step... its helping to teach me things I need to know and if I just blow right by I am going to be missing tools I need later. I need to do the work in this and process through stuff so we can take the next steps and there is a difference between working through stuff and dwelling in a place and working through stuff is healthy even if it means feeling for a little longer then my made up time clock.

I also think I made a lot of assumptions over the years about how right now would feel. It was rather idealistic. I can understand why people on the outside wouldn't even think that we might be having a hard time this week... this is what everyone has been praying for years for. But what I am being reminded again is that a diagnosis is just that... a diagnosis... its not a savior. I am hopeful this research study comes back with an answer... I really don't want to walk through it coming back inconclusive... while I know God would walk with me through that too, I am hopeful that we don't need to... but at the end of the day it is a name. There is a lot of value in a name... I don't want to downplay that... this still is a huge deal and we are SO thankful for this study, I don't want anyone to think otherwise just because of the emotions we I am writing about (another society pressure... one must not feel anything but complete gratitude... no complex feelings allowed). We are still in awe that we are at this point in our journey, that we are at this step! However I thought for many years that this step would feel differently then it does... it feels a lot more complex then I thought it would.

Today in worship we sang the lyrics below. And I cried (apparently tears are my thing today?! I am not normally a cryer). In this situation it has felt at times like God is hiding His plan... that we are left in the dark to wander and while I know that isn't true and that God is good all of the time, sometimes that is easier to say and have as head knowledge then to live by.

God is Good by Dustin Kensrue:

Even when it seems the answer's no
The promises of God all find their Yes
In Christ who worked the Father's will below
That all who run to him would find their rest

And even when it seems he hides his face
And darkness seems to be our only friend
We look to Christ who suffered in our place
That one day all our suffering would end

God is good, all of the time
All of the time, God is good
God is good, all of the time
All of the time, God is good

And even when it seems he pays no mind
We have a guarantee of his great love
In Christ who came and left his crown behind
That one day we would reign with him above

Lord, we believe
But help our unbelief
Lord, we believe
But help our hearts to sing

That you are good, all of the time
All of the time, you are good
You are good all, of the time
Your are good
Lord, you are good

If you were not near us in church today you missed Lydia worshiping... I love watching my kids worship!!!

Saturday, July 21, 2018

Keenz Stroller Wagon

***this is not a paid advertisement, it was a gift from my parents who has no affiliation with Keenz and bought it at a retail store that they have no relationship with... other then our love of shopping there lol***

You know you are a mom when you ask for a kids wagon for your birthday!!!

A few years ago for Black Friday my parents bought us a collapsible wagon for Christmas. I had thought it might be helpful for unloading things at RMH. It is one of those gifts we use ALL THE TIME!

But all of the time use of that wagon has caused it to start to fall apart... a few weeks ago a manager at RMH came to us with a can of WD40 because it was squeaking so bad you could hear where we were in the house.

We knew that the wagon was going to need to be replaced but with how much we use it and how we are using it more as the girls get older, we decided that investing in one that could hold up to our life better might be wise.

I am a research person. I follow a car seat blog for the fun of it because I find it interesting. I joke that one of my dream jobs would be a baby product designer or reviewer. Seriously, I have loved researching baby products since I was a teenager.

So I started researching folding wagons. We need a folding one because in our trunk is already a wheelchair, double stroller and single stroller and we are back and forth to RMH all of the time so we are often traveling with a van load.

What I noticed was most brands were the same as the one we already owned just branded differently. But the Keenz seemed different....

The things I like about the Keenz:

-It folds
-It comes with a sun shade
-It comes with a storage basket that perfectly fits an oxygen concentrator or two tanks of oxygen
-It comes with a cup holder
-It comes with a cooler
-It has 2 5 point harnesses to keep Lydia in the wagon
-It has tall sides
-It has a breaks
-It has a 110lb weight limit
-You can pull or push it
-Its' handles are adjustable 

My parents go me the Keenz as a birthday gift so I put it together this morning. It was easy to put together and about the same amount of work to put together as most strollers.

The kids wanted in it right away so we agreed to go for a walk tonight. Brent and I both pushed and we felt like it steers pretty well. We have two Baby Jogger strollers and I think those are easier to turn and keep straight however I feel like the Keenz and the Chicco Lightway stroller steer about the same... and definitely better then some of the other double strollers that I have tried.

The kids loved it. They liked the cover because it was misting out. Jilli was tired so she laid down and she fit laying while Lydia sat.

I am excited for all of the use we will get out of this product and how it will help when we are at RMH and the hospital!

At Target in a Keenz

Lydia wasn't pushed to the side she was just tired so she was resting on the side

Two oxygen tanks and two feeding pumps in Keenz stroller wagon

Keenz wago with Respertronics Simply Go in storage bin

Thursday, July 19, 2018

A long few days

We are back home...

Just in time for the music fest that is down the road... it sounds like someone is playing kick drum in my front yard! Our house far enough that it doesn't really sound like songs... but close enough that it sounds like a street preacher yelling at you with a backgroud of bass and drum. I normally try to have some reason to not be at home this weekend (the roads are busy, cell and internet service suck and the noise makes you feel crazy after a very short time) but we have been away from home too much lately to have time to plan to be away this weekend!

The past few days have been long and I feel so tired.

I am not sure how I thought I would feel when we were told we likely had a diagnosis but I know it wasn't this... but I think part of it is that we still have a giant maybe... we COULD have a diagnosis... pretty likely that we do... however they could come back to us and tell us that they were wrong... that this was just another rabbit hole. I think it might feel different once they tell us a definitive.

Jilli has also been off the past few days. I know all kids have their turns at pushing buttons but Jilli just hasn't been her behavior wise the last two days. When Jilli isn't getting oxygen she acts slap happy and that is how she has acted the last two days. Things she wouldn't normally think of trying she has. Her awareness of safety and personal space are very different. Also in OT yesterday they said her skills were much weaker yesterday then they have been in a long time... including when she was in the hospital last. It has been a challenge these past two days because she just isn't acting like her. She said last night that her brain felt funny but it didn't hurt. By last night I was exhausted from having to correct her choices so much and she lost playing iPad... Jilli is typically our rule follower.

Lydia has been doing well. We had her surgery follow up today. Her site is healing well and they were able to use different wipes to get the section of skin next to her incision back to normal looking. Lydia played and loved to sing Twinkle Twinkle to the plans in the garden.

Today we did gardening before leaving. I love how Ann invests in my kids. Jilli loves time with Ann. Lydia loved playing in dirt! They harvested some things and planted others. Gardening time is some of the best time in the world. I never thought planing could show so much love. Ann invests in us and has words of encouragement in the moments I need them. Ann is one of those people we likely wouldn't have met if it wasn't for the girls medical stuff and rmh... but I think we are all so bless just by knowing her!

I think we are going to take some calm time... maybe away from home lol (Brent's goal is to get more bathroom work done this weekend), celebrate my birthday a little more (we were blessed last night to go out with Nate's family for dinner) and do things to recharge... I feel like I need a recharge right now but I am not sure how to do that right now or that I have any energy.

Lydia with her magic room toy

Lydia singing Twinkle Twinkle to the flowers

Lydia playing the the potato heads by the potato plants

Brent got me chocolate for my birthday from the AMAZING Sweet Impact Chocolate... go check them out!!! (yes those are hand painted!!!)

Jilli picking peas

Lydia tried planting the potato heads

dirt time

Dance therapy

Writing in the managers office with one of the girls favorite people... Laura!

I LOVE this picture

Come On

I have stated before that I will always hold Christians to a higher standard... because we are called to those standards.

Being a special needs mom, a lot of my support comes from Facebook because I am able to connect with other parents on there.

But there is a part of me thinking about getting off...

and it has nothing to do with special needs...

its all about how Christian's are treating people who don't look exactly like them.

The thing that drives me the craziest is the memes and videos that says that if you are a person with any fame and you are note pushing the Republican Evangelical agenda then you shouldn't have the right to speak.

Many memes don't come out as far as to say that directly but there is the video from Dolly saying she isn't in politics so she doesn't talk about it that I am seeing spread around with people saying she is one of the only smart people... there are the memes about the awards shows... it goes on and on...

The issues with this is:

1. This same group of people cheers when people who do fit their mold talk... and often to the point where if the person that fits their mold doesn't get all of the spotlight they get angry. They promote Tim Tebow or the Duck Dynasty comes onto the stage but people that don't fit the mold are told they don't belong....

The problem with this is that we tell people they don't belong in the Cristian world which then says they don't belong to come to church... that is a poor way to evangelize.

2. We are often sending friendly fire... there are so many people in Hollywood and other places that are Christian and just because they don't make Christ their brand doesn't mean that they don't have a real relationship with Jesus... but we say that because they don't fit our mold that they don't belong... the might be doing huge things for the kingdom but not standing on the street corner like a phrase yelling about it.

3. We don't test people who do make their brand the faith... Mathew 7:15 talks about watching out for a wolf in sheep's clothing but we often fail to do this with people who present themselves in the brand of Christ... we don't look for false teaching... we are harder on people who are outside of the faith then people who make a brand around Jesus.

4. ALL people are allowed to be complex people. If I said x conservative was not allowed to say anything political because they were a on a TV show this same group of people would be yelling about that. I really disliked that Duck Dynasty backed Roy Moore... because Roy's character worries me... you can have the ten commandments posted someplace... but it is a lot harder to live by them. Puppet shows are easy compared to integrity. However I never said that people couldn't talk even if I disagreed with each other. The first amendment is first for a reason and free speech is really important.

5. Donald Trump is a TV star turned president who runs the whitehouse like a TV show... if you think about the logic that people can not talk if they have any fame for longer then a few seconds this hits you and it sounds foolish... Jesus talks a lot about being a hypocrite. Donald Trump has used his fame for a long time to talk about politics and at one point it wasn't for the same party he is with now. 

6. If you believe that all are made in the image of God it is very selfish of you to say that someone only exists to entertain you... no person on this earth was made just to make you happy... thats not fair of you to ask a person and it seeks to diminish them as a person.

We don't learn from each other when we spend all of our time debating who should talk... now I am not saying we should be ok with hateful words... but right now it feels like it is more ok to say hateful things if you fit the mold then it is to say constructive things if you are out of the mold... it feels weird right now that at times the people who are calling for the most kindness are not the people in the mold...

I still believe Jesus is the only way... but I also think that we don't help other people in their journey to Him by telling them all the time that they suck.

The church needs to focus on being the bride of Christ... that doesn't mean that we are not involved in politics at times... but that means we shouldn't be married to a political party. 

Now some will say that I am not being fair because people on the other side are not always kind to Christians... you are correct they are not always fair... however that doesn't make it right when we do it... you can not use someone else's sin to justify your own... especially when that other person was not called to follow those rules. We can't expect the world or culture to see us as any different if we spend all of our time justifying why we don't have to follow the rules that we are yelling at them to follow. It is our job to be the example. It is our job to admit when we failed and ask for forgiveness. It is our job to extend love.

Tuesday, July 17, 2018

We might have a gene

Today feels very overwhelming... but in a good way.

It started this morning with an email from NIH saying that because there are two kids involved in our case and so much testing that they want us there for two weeks... in February! I will admit, at first I felt kinda bummed that it is so far away and February tends to be a hard month for Jilli. Her body really struggles in February and while it is good for them to see the real deal of what is going on... doing that at a hospital far way from home and having a crash would be hard. Also NIH can not treat they can only do diagnostic things so we would likely need to go to a close by hospital if she crashed. But I prayed and said that I didn't understand the timing but that I was trusting that God had a reason... I just asked that at some point He would give me a clue to what his reason was. I am a planner... a list maker... I like things to be in my timing and every time I think I have learned that lesson that my timing isn't the perfect timing I learn it again. Special needs parenting is a lot of learning that you don't have perfect timing and learning to wait... a lot!

We already ad Lydia's genetic appointment scheduled for today. I wasn't expecting much... we had been told by others that there was nothing really to tell us for the genetic report so I went alone with both kids. First off the clinic was very warm today... I am a naturally cold person... I was so warm.
I thought we were just meeting with the gene counselor so I was surprised when the doctor walked in with her. He asked what other people had told me about the report since he saw in notes that others had mentioned it. We went over the muscular dystrophy gene and how she only has one copy and that Jilli doesn't have that gene and that type of MD doesn't fit. We talked about the second found gene while both girls do have but they each only have one copy of the gene and that gene is known for significant cognitive delays which the girls don't have (Lydia is already counting to 12!)
And then things got interesting....

They said they found a gene... that both girls have two unusual copies of... one from me and one from Brent. That this is not a known gene variance however they have a lot of backing to believe this is the gene...
so what now...
The hospital is taking up a research study on this gene to prove that it is the disease causing gene. There are some good reasons for them to believe this is it however they have to go though all the steps to scientifically prove it since this is an unproven gene variance. This will take several months but could take up to a year however their goal is for us to know by February if possible. There is a lot of testing and research stuff that will be going on with us and we might need to do some other testing but likely not much, this will mostly be research lab stuff right now.
What does this change... right now not much. This will likely not change any treatment... they said today that it is very important that we keep up with GI and pulmonary and keep those supports on board and to keep the girls in PT.
We are working with a new gene variance here so even if this all pans out it likely will not change anything for the girls...

but it would be a diagnosis....

it would be validation.

And for a mom who has been questioning for 5 years if she was pushing enough or doing the right things and all the other questions in my head... its a name! Its something to say in the store when people ask whats wrong.

There is a lot of power in having a name.

Tonight we are overwhelmed.

Tonight we don't know what to think.

My heart is guarded however this is the most promising test we have ever had... this is the closest we have ever been to having a true diagnosis. I'm scared to let my walls down but at the same time on the brink of tears.

Also Lydia's muscle biopsy is back... it looks just like Jilli's.. atrophy of the type two muscle fibers and other little changes but nothing enough to be able to say anything definitive from the biopsy.

The reason no one else knew about this was because the gene can not be presented in a clinical standpoint yet until they do the research on it. There are rules and protocols with gene testing. Its not on the paper report that everyone can see because it can't be yet. There is still a lot we don't know about the gene but in time we will know more. This is why we needed to meet with genetics. We also needed to sign paperwork agreeing to the research.

So where does this leave us...

waiting... but waiting while people are working.

We do not know what this means for our NIH trip yet. We need to talk with people and find out what is going on with that.

Tomorrow is also the 5yr anniversary of Jilli's first surgery... her first tube surgery (which had an issue and needed to be redone a few weeks later)… its also my birthday! The girls like to do big medical stuff around my birthday (Lydia went NPO and off breast milk on my birthday right after she was born... nothing like telling a hormonal mom on her birthday that their milk is not helping, thankfully we have a very loving doctor who was so kind in how she told me but hormones were still high).

A HUGE thank you to the RMH staff who have become family to us and they processed with me once I got back from the appointment and helped me get the kids to the room and celebrated with me and understood the weight of it with me. I called Brent from genetics crying while he was at work but I am so thankful for the love our RMH family showed us today. I am also thankful that my parents came and hung out with the kids so Brent and I could have coffee and talk. This is very overwhelming. This is a day we have been waiting for a long time and it still just doesn't seem real. Thank you to the small group of people that I messaged after I got back to the room, thanks for the support and love in a moment when I felt like my world was spinning... I am so thankful for the people who invest in us. There is no way I could have driven home after that appointment so I am SO grateful for RMH. Also a huge thank you to the team we met with today, they were so kind and asked me over and over if I had questions and took time to talk with me, I am very grateful for them!

And with that... I am going to try to sleep... maybe lol

Saturday, July 14, 2018

checking stuff off

Life has felt rather overwhelming since we got back from RMH. My body has not kept up well and I have felt exhausted so I have been trying to balance rest and getting things done.

But I often feel like I don't get as much done as I would like to. I am rather hard on myself of all of the things that I feel like I don't accomplish in a day.

So I am writing down all the things I did yesterday as a reminder to me for those days I am beating myself up.

-I called central scheduling to make the girls dental appointments

-emailed NIH to make sure they got my last email because I had not heard from them since the 2nd... they emailed back that they were working on the next thing of paperwork. They emailed over more paperwork to fill out so I filled that all out. Brent now is working on the scanner to get it to scan in everything so I can email it back.

-Re-organized a closet

-emailed the person on the council about a project

-filled out the records request paperwork for Shriners to get the things they need from chw for the new clinic and sent that the chw. Chw sent back an email with some of the records... I printed out the 120 pages and hole punched them and put them in my binder.

-I called Shriners to see about scheduling the follow up since the scheduling window was closed when we left the other day. They called back saying they scheduled us for a day in October just with the one doctor instead of the MD clinic and I said that I thought we needed to be seen by the clinic and they transferred me to leave a voicemail for the nurse. I also noticed that the time they scheduled the appointment for was at the same time as our GI appointment at CHW.

-I called central scheduling to see if we could move the GI appointment since we now had two appointments at the same time in different states. They said the soonest they could do was January so I emailed our special needs coordinator to see if she could work some magic... she couldn't so hopefully when shriners calls me back we can more that appointment... I hate it when places schedule appointments without asking first.

-I emailed back and forth with the person in charge of the golf outing finishing up my speech and working on other opportunities we are participating in that day.

-took down the snow village... yes I know it is July... we only put it up every few years because it always takes a while to take down... it just hasn't been at the top of the list but I wanted other things in the kitchen to get cleaned and I needed that space

-the normal daily things of meds, diapers, getting kids dressed, cleaning up a huge bile mess Lydia made

-I got a shower in!!!

-We went to Freds for dinner, walked to Adrians and went to Kohls

-re-organized formula and pedialyte

-Make a Wish called!!! Jilli's medical team nominated her for a wish and Make a Wish called to say that Jilli qualifies for a wish and what the next steps are. Jilli and I spent a while talking about what she would like for a wish. I made a youtube playlist for Jilli to think about wish options.

-Worked on some things for Jilli's birthday trip

-started to work on ordering Lydia's 2yr pictures

-wrote up a thing for Brent's company to send out for the run walk to hopefully add more people to our team and raise money. I also did a facebook post to try to help with the walk too... sadly this year we are really struggling to raise anything :( By this time most years we are at least half way to our goal and this year we are at 5%

-organized some donations for rmh and packed the kids clothes to head back to rmh 

Also a huge shout out to my mom who has spent the last two days here helping out (I spent 4+ hours on Thursday working on laundry from being gone). She and Jilli cleaned the dinning room (Lydia loves to throw toys under the table), took care of recyclables (we recycle so much more then have trash), and cleaned Jilli's play area... Lydia... well she helped to make more messes lol!

Sometimes I feel like I fail at keeping the house the way I would like to and feel like at the end of the day like I didn't accomplish anything but when I look at that list I see all of the different ways I was pulled in one day and all of the things I really did accomplish.

Tuesday, July 10, 2018

Shriners MDA clinic and a really cool park

We have been home from rmh for a few days but I feel like the physical effects of the past few weeks are hitting today. I am sitting in bed with a blanket round me, trying to stay awake at 7:30pm and my stomach doesn't feel great. I am a person who in the moment just does. I can make the hard decisions in the moment. Its rare that I cry in the hospital. I did cry briefly once Lydia got out of the hospital and I was walking the bridge over with her while Jilli was still in the hospital... I looked down at Lydia's leg and the bridge was empty except for us and I stood there and cried for a while... I felt like crying the day before but there were other people on the bridge. My body holds it all in until we get home. Which has its advantages and disadvantages... in the hospital I am able to have clear conversations with doctors and do all the things that need to get done... I can make choices about surgeries and options and be able to make them with a clear head... but that means my physically feel like crap once I get home, but once I get home I need to unpack, and clean, and empty the fridge, and remind the 2yr old of what the rules are at home. I feel so stressed looking at all of the bags of stuff. We are also in the midst of a bathroom remodel which means time that would normally go to keeping other parts of the house up are going to that... it is what it is but I would currently hate for someone to come over to the mess. My body held out til today though because we had an appointment yesterday as well.

Yesterday we met with the MDA clinic at Shriners. We have gone to Shriners for a while for the girls' leg braces but we have always been seen in the orthopedic clinic, however that clinic suggested that we move to the MDA clinic because it would meet the girls needs better. I don't think I was completely mentally prepared for this appointment... I knew we were meeting a new team (cue me feeling the need to dress professionally to make a good first impression) but I didn't get how many people would be in and out of that room.

First we got the girls vital in the hall so we had to take their braces off. Then we went to the room and a dietitian came in and asked us about what the kids are fed and thankfully I printed off our "taking care of" sheets which has everything listed on it (I wrote about these sheets HERE). She said that since we follow GI so closely that she doesn't feel the need to change anything which is good. We have a good feeding plan right now and rocking the boat is not wise. Then a rehab doctor came in and we talked about equipment and needs. We talked about how the Smart Drive doesn't work as well as anyone had hoped. We really wished that was a better solution for Jilli but it has so many issues. An NP from ortho came in and we talked and then some med students came in and then OT and PT came in and then the ortho doc came in and wanted to see each of the girls walk. It was crazy and at times there was so many people in the room I didn't know who I was suppose to be paying attention to. We spent a good 2 hours with people just coming in and out. Then we sat for over 45min and I poked my head out to ask if we were good to go and they said the main doctor had not been in to see us yet.
The neuro came in to meet with us. This is where I was so frustrated that I couldn't find my medical binder before we left the house (as we were at Shriners I remembered it was with all of the NIH stuff) because he wanted to know the results of everything and they do not run the same medical program as chw so they can not see stuff from the other hospital. He wanted to know everything, from pregnancy to birth to all sorts of things about the girls. We spent well over an hour with him. My brain was mush by the time we were done talking. We talked about the gene he and some colleagues discovered that is close to what is going on with the girls but not the same. He is really interested in the girls and wants to join the journey. We see this clinic again in 4 months and at that time we are bringing some of the lab work and MRI scans with us. Everyone is hopeful that maybe the full genome sequencing that NIH will do might bring some more answers. He was really fascinated by Jilli's crashes and you could tell it really got his gears turning. 

I was expecting this appointment to be around 2 hours but instead we were there from 1-5:30! We had planned an adventure for the journey home so we headed off on that. Select Target stores use to sell the American Girl Wellie Wishers and are now clearancing them out. Jilli got a Wellie Wisher when she was in the hospital because my mom had Kohls Cash (Kohls has them too) so we hit up the only Target in that part of IL that sells them to hit up their clearance. Jilli was excited to find pajamas for her doll!

Then we headed to a really cool park in Huntley. It looks like a little community with little buildings and a fire truck and school. There is also a music section... Jilli's favorite part... a wheelchair slide! It is basically a two way ramp with concrete up the one side and the soft playground material on the other. Jilli has been saying for a long time that she wanted to go to a park with a wheelchair slide but none of them that we have been to have had something she considers a wheelchair slide... she just kept saying this was the best park ever and it was the best day. She LOVED this park! It was SO cool! I am so thankful for communities that have parks like this that everyone can play at.

We did get a few mosquito bites at the park though and Jilli work up before 6am crying that they itched... and she didn't go back to sleep and woke Lydia up (who feel asleep yesterday once we left Shriners so she didn't go to bed until around midnight). I was not ready to get up when they did!

This morning we needed to run to Target to pick up a med. I forgot my phone at the check out and left and then realized it so we went back to Target and they had all the carts inside so I ended up carrying a child on each hip and an oxygen tank, a concentrator and two pumps into Target... this is why we have a disabled parking pass... my arms were dead once we made it in the door! Thankfully they had my phone.

Lydia has had a very two day... she learned the word mine... She has had a few epic melt downs today too. I worked on bills and taking care of some things. I got a little unpacking done but still more to go especially since we head back to RMH very soon. We will be bouncing back and forth for a bit here.

I still have not heard anymore from NIH. Pray for communication there and for calmness from me and it all feels overwhelming right now but I know it is a good overwhelming. Also pray about a supply issue we are having with a medical supply... its a mess that I have been fighting for months and I am getting very frustrated and worn by it and am starting to have to get my stronger advocate voice out which I don't like doing especially with someone who has been very intimidating in the past and has tried to use their authority as a threat. I am not just working for us in this situation but also for other kiddos we know and it is really weighing on me today and I feel very frustrated.

Time to go cuddle with the little girl next to me who is reading a Playmobil catalog and get some rest!