Love

A positive post for the end of the week :)

Ever been someplace where you just knew your kiddo was cared about?

Today we had Jillian's GJ tube change out. This has to be done in intervantional radiology every 3 months. Jillian has had a tube that goes into her intestines since she was 4mo old, so we have been in IR at least every 3 months since then (we had a few pain in the butt NJ and PEG GJ tubes, but since switching to buttons we have been able to go 3mo every time!)  Honestly we see them more often then a lot of our family and friends.
How Jilli reacts to tube change outs is really a testament to how great that department is (all except the one guy, who Brent disagreed with again last time, but he is not around much). They greet us so kindly when we get called back. They are just so calm. I remember how scared I was sitting in the waiting room when Jillian's first NJ tube was placed, all I wanted to do was cry while she was back there (I was in a room full of people so I kept myself together!) but now I have no worries sending Jillian in for tube change outs.
When we first got to radiology check-in today there was a service dog in the waiting room (Jillian is allergic) so I had Brent wait in the hallway with her while I checked her in. Then they called us back to IR to check in about the last time she was fed, her weight, ect. Then Brent suited up to go back with her. After the first couple of change outs they started letting one of us go back with her to hold her hand, which I really appreciate. Since I am pregnant, Brent gets to do all the tube change outs right now. At Jillian's last tube change out we were not telling people yet that I was pregnant, however at this point you can't miss that I am pregnant, I have most definitely "popped" and this baby is good at kicking. Jilli was busy telling them that she wants to name the baby "Monkey Play-Dough." Brent and Jilli then headed back into the room and I headed back to the waiting room.
A little while later out they came, and Jillian was holding a Barbie. She was SO excited. Brent said that she did an amazing job and did not make a noise about having her tube changed, so they gave her a Barbie. Jilli is just starting to discover Barbies. Over Thanksgiving I dug out some of my old Barbies at my parents house and let her play with them. For her birthday she got a couple and she got one for Christmas. We were at Target last week and she noticed the Barbies and asked if when she was bigger if we could think about buying her more Barbies. She said it so matter of fact and not in a begging sort of way. I told her that we would definitely look into getting her more Barbies when she got bigger, so to get a new Barbie today was a huge deal to her.
We then headed up to the second floor so Brent could grab my cousin Jake subway (there is now a Subway in the skywalk). Jilli and I hung out in a waiting area so I could get her tube feedings started again. Then a very familiar face walked by, our GI nurse Lisa. Lisa and Jillian go back to when Jillian was a tiny little 2mo old who was puking all of the time and not eating. When Jillian was younger we kinda lived in GI and were blessed with an AMAZING GI team. Between the doctor, nurse and dietitian, we had a team of people that were really looking out for the best for Jillian and helped this first time momma figure out how to take care of a child with feeding needs.
Jilli and I were able to catch up with Lisa for a while (we have since changed GI doctors , and she has changed departments) which was really nice. I really appreciate how much Lisa cares for Jillian. Seeing members of our original GI team makes my heart smile (not that there is anything wrong with our new GI team, they are great, there is just a lot of history between us and our original team)
Days like today remind me about how blessed we are with such an amazing hospital! There are times that I get frustrated when things don't go as quickly as I would like, or times I disagree with a doctor, but overall it is an amazing hospital. When we have days like this where we see IR and I see how much the care about my child and work hard to do the best and safest thing for her, all while making her feel comfortable, and then we run into Lisa who also has worked so hard to do the best things for our little girl, I am reminded about how Children's has become like a family to us over the past 3 years. We are so blessed to have such a great hospital so close to us (Lisa and I were joking today that my car just knows the way).

After we finished talking with Lisa we headed over to see my cousin Jake who is in the hospital. We let Jilli play with her new Barbie while we visited. On the way home Jilli fell asleep in the car and is now resting. She woke up a little bit ago asking for her daddy. She is such a sweet girl! Looking forward to a low key weekend!       

She fell back to sleep on the couch after sitting up

Jilli and her new Barbie!

This picture does not do it justice! She got new jammies that have glitter on them and in turn they got glitter all over her and our house 

The baby bump

Madison Genetics

Yesterday was the big day. The long awaited genetics second opinion in Madison.

We thankfully found our way there and got there with plenty of time. We even got to stop at Einstine Brother Bagels on our way there which is one of my comfort foods and reminds me of a family that means a lot to me. We checked in and headed to the waiting room. Everything just felt so new. We have lived at Children's in Milwaukee for three years (Jillian's first hospital admission was the first week of February 2013) so it felt weird being someplace else and figuring out their routine. The waiting room was an odd experience but that was nothing to do with the place but the people in it.
We were called back for Jillian's vitals. Even though it is the same computer system as Children's in Milwaukee, none of her medical info is in their system, they can look into Milwaukee's charts on her but that does not add all of the stuff to their chart for her so I was VERY grateful that I had taken the time to write down all of her medications and doses before we left home so I was able to just hand the woman the paper with all of it on there so they were able to input it quickly.
We then headed to a room. First a genetics counselor came into the room. She asked us about why we were there and what we were hoping to get out of the appointment. She was very upfront with us though in that they had looked at some of Jillian's stuff and that we probably would not be getting answers at this appointment. My heart sank a little but I kept going. In my binder that the first person had was all of the important genetic testing information so the genetics counselor then went to see if she could get my binder when they were done inputting meds so she could make sure they had all of those documents as well.
The doctor then came in. He commented that we have been able to get a lot more testing done on Jillian then they are normally able to get insurance companies to cover. As much as it has been a pain and a trial that Brent has been employed at 4 different places in the last 3 years, we did have the blessing (and frustration) of working with multiple different insurance companies and different ones covered different tests. He then told us that there really is no other testing that we can do (insert glass breaking noise) and that science probably is just not at the point yet for us to have answers. When they do genetic testing they don't look at all of your genes and they only look at genetic errors that they know what they do. There is still a TON we don't know about different genes. We talked about Jillian's symptoms a bit and he did an exam of her. He seamed very intrigued by her.
Jillian has one gene that is a known mutation, however she only has one copy of the gene and it is recessive (meaning she would only have the disorder if she had two copies of the gene) The doctor said he would look to see if there has ever been anything studied about people with only one copy of the gene and what the disorder looks like in muscle biopsies of people with only one copy of the gene. When we left I looked into that disorder a little bit however while that disorder is a muscle disorder, the disorder only effects people when they try to exercise (and does not effect them when they are not exercising). While my 3 year old likes to try to do children's yoga, she has never really exercised in her life. She can walk quickly at times however she is is not able to run. She is not trying to lift heavy weights. Her body is effected by whatever this is 100% of the time, not just when she moves.
The one thing that really made me happy was that they made no mention of her being cute. See Milwaukee genetics has always commented how she is cute, thus there can't be anything major wrong with her because she is cute. I fully understand that there are many disorders out there that cause changes in facial features. Let me state now that these kiddos are not any less cute because of their facial differences. It always rubbed me the wrong way when they said that because obviously there is something going on with Jillian, and I felt it was rather disrespectful to other kiddos. Thankfully the doctor we met yesterday never made that comment. He commented on how she does not have some facial features of some disorders but it was not in a way that was dismissive of Jillian's medical needs or being disrespectful to other children.
They said they would look over her chart a little more and look into that particular gene a little more and they would give us a call at some point, but it was very much a "don't get your hopes up about this conversation."
We then decided we needed to do something fun for a little bit and we headed over to the Madison Children's Museum. Jilli had a great time playing and showing daddy all around (Brent had not been there before but Jillian had). We had some good family time together.
We then ran to Janesville and ran a few errands. Im starting to work on stocking up the things we need for this baby while they are on sale so we ran to Babies R Us (the things that are disposable, diapers, breast milk bags, ect... the stuff that was all used up with Jilli, thankfully most of Jillian's big stuff will still work for this baby!)
We then headed to Whitewater to meet Jaime, Jason and Emerson for dinner. It was nice getting to see friends at the end of a long day! Jilli was really cute, she was telling Jaime and Jason about the museum and Emerson started to cry and she looked at him and said "its ok, you can go to the museum when you are bigger." She also wanted to share her iPad with Emerson.

So where does this leave us... my first thought that comes to mind is "WITHOUT A _______ DIAGNOSIS!" It is really hard to explain this feeling of having an undiagnosied child. You bring your kid to the doctor, they tell you what is wrong and how to fix it... that is the mindset of our culture. People ask what Jillian has... i don't know. They ask if she will grow out of it... probably not, but I don't know. People ask if she has a shorter life expectancy because of this... I don't know what "this" is, so I don't know. I know exactly how my calories she gets a day, I know about each of the 11 medications she gets daily, I know the digestive system and respiratory system better then I ever have, I know the days in and days out of taking care of a feeding tube... but I have no idea what is the root cause. Its frustrating.
To be honest, I woke up today feeling like a tuck had hit me (then having a cavity filled this morning did not help). I don't sleep much before big appointments, and to be honest I don't eat the best either (although I really pushed myself this time because I have a little baby in me that needs to eat). Big appointments are emotionally exhausting. Brent and I made the choice early on during Jillian's first hospitalization (they were looking for brain tumors and stuff along that line her first hospitalization) that we were going to have a positive outlook on all of this. That we are blessed with an amazing little girl no matter what and that we are going to find the joy in her and not live in sorrow because of health challenges. I have seen too many people let situations suck joy out of their life, and I am determined to always find joy and hope in every situation...
But what I have to remind myself is that still sometimes things suck, and it is ok to be frustrated. I don't give myself a lot of slack to be frustrated, I push myself to try to find the positives, and while there are so many positives with Jillian, there are going to be things in this life that are frustrating and mentally exhausting and it is ok to feel those emotions too. And I need to not get mad at myself when I find myself getting frustrated that we don't have an answer yet.
So what next? I am not sure. I am going to wait for their phone call (please let them be more organized and on top of things then Milwaukee's genetics department!) and see what they have to say, but honestly I am not expecting anything. We see neurology in Madison next month, so we will see if they have any ideas. Past that, I'm not sure. We will continue to treat the symptoms as they arrive (thankfully since Monday night her lungs have sounded better). The questions swirl in my head of how far do we push for an answer? How many doctors do we visit? When is enough, enough and we just accept that medicine might not have a name for what "this" is? There are too many body systems that all have issues that seam to stem from a muscle problem for it all not to be connected but what if there is not yet a name for whatever this disorder is? At what point can I confidently say we tried everything we could to find a name for this? At what point does it not feel like we are giving up on her if we stop actively searching for a name for this? Will we always be searching for a name? Are we just not meant to have these answers? Is the best we can do for her is treat the symptoms?
These are the questions that I don't have answer for today, and might not have for a while

So for today I hang out and play baby dolls with my little girl. I laugh at her funny comments (like she informed me the baby is peeing in my tummy, thanks kiddo, I try not to think about the fact the baby is peeing inside of me). I just love my little girl for who she is!        

What I do want to do today is thank our support system. I had multiple people send me messages yesterday letting us know they were thinking about us and praying for us. I can't even start to explain how much that means to me. Thank you to the people who when they found out we did not get answers were very supportive and loving. I am SO blessed to have awesome people in my life. And a special thank you to Brent for being an awesome husband and dad. For walking this journey with Jillian and I and loving me even though I get crabby sometimes (I will full admit that I am crabby today between the emotional weight of this and my tooth being drilled into, im probably not someone you want to be around today but he worked a full day and then came home and made me mac and cheese and changed Jillian's poop while I wrote this post) Thank you to everyone who is a part of our journey and loves us!  

Jilli and daddy doing art at the Madison Children's Museum

She loved the water play area

Nice thing about going on a Tuesday afternoon in January... We had most the museum to ourselves

Pilot Jillian

Jilli wanted to build a house

She did a good job taking care of the babies. She thought the washboard was rather interesting

Follow Up to this mornings post

I'll be honest, I am sitting here writing this post with tears in my eyes. I just turned on Pandora to as Jillian calls it "Jesus Music" which is the station for the song Good Good Father, that station has been played a lot in our house lately. I turned it on just needing to clear my head a little and a song came on that I have never heard before (I listen to this Pandora station almost every day and frequently for several hours of my day, so I know most of the songs they play on there) The song was by Lauren Daigle called "trust in you." These lyrics hit me hard:

When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

Truth is, You know what tomorrow brings
There’s not a day ahead You have not seen
So, in all things be my life and breath
I want what You want Lord and nothing less

If you read my post this morning it was about how the past 3 years have been about a lot of waiting and having to trust in God in all of this even when I don't get things in my timing. This song hit my heart.

See I wrote this morning how Jillian has been sleeping in some mornings because she is not falling asleep until later. Well once Jillian woke up this morning she was in a good mood but just sitting and not doing much. She is not overly a morning person so I was just letting her slowly wake up. She was sitting and playing iPad about 4 feet from me (which this weekend she completed a puzzle on the iPad of putting together the skeletal system, and then figured out how to do mazes on the iPad...) and I could hear her breathing. Last night she was playing iPad and refluxing a ton (no the child does not live on the iPad) and I just figured it had to do with the fact she was playing her Mickey game and in part of the game you can use nacho cheese to paint (weird!) and when she sees food like that she starts to salivate and then refuxes the extra saliva. I told her to do something else last night and then it was bed time and her reflux seamed to get better.
I went and got my stethoscope and listened to her lungs and they were not making good noises so we started a neb. This is her first neb since June which is such a huge change from pre-oxygen. I tried getting a pulse ox but our stupid pulse ox (just one you can buy from Walmart) gave me a different pulse ox and heart rate for each finger. She spent her morning just laying around. We then headed to therapy (they have a nice pulse ox) Her pulse ox never got above 95 and with her on oxygen and walking for a few minutes it would dip into the low 80s (while on oxygen). We would have her walk a little bit and then sit for a little bit. We spent the last half of therapy blowing bubbles while she sat and used her leg muscles to kick at the bubbles (she blew a few bubbles too). She was also refluxing a lot during therapy, it has been a long time since I have heard her reflux this bad when she was not watching something about food or doing an oral trial. As we were leaving therapy she told me she needed to go home and lay down because she was sick. She did her "I don't feel good" moan/whine the whole drive home. We got home and she laid on the couch for a while. Then she sat and did puzzles. Then it was time for another neb. After her neb you could tell her body was feeling the neb meds and she got very jittery and cranky. Finally around 5pm tonight she started playing with toys for a little bit (she had a melt down too because a paper free "toy" that came in a movie  broke months ago and it was recycled and she wanted to play with it today) She and Brent were just playing an iPad game together and cuddling. Thankfully she is feeling a little better tonight and I really hope that whatever earlier today was is turning around.

After therapy while she was resting I worked on getting together all of our paperwork for tomorrow. We gave permission months ago for them to get all of her records from Children's but there are a few different reports that are really important that we want to make sure we have with us, including the one with the muscle biopsy report that was missing for a while and someone had to find so I could find out the results.
On top of it today I am just feeling really pregnant. My belly is working on stretching and expanding today and every time I stand up I have to pee. It is just par for the coarse but I think because today has been so stressful between Jillian's lungs and getting ready for this big appointment that I think I am noticing the discomforts of pregnancy even more today.  
Tonight my mind is just racing. My heart is anxious. I know that all I can do is place my trust in Him.

Playing iPad while doing a neb

She just laid on the floor for a while this morning

Our week

Ever feel like you are on the starting line to a crazy week. That's how I feel today as I sit here and have my breakfast and blog in silence. Jilli has not been falling asleep until around 10pm lately so thankfully that means some days she sleeps in (yesterday she was up at 6am!)
Today we have therapy which is our normal Monday. We had to do he prior authorization for the state (we have to do it every 6 months) and we are hopeful that this 6mo period they give us more then 6 sessions. It is hard because we dont have a diagnosis thus they don't really want to continue to pay for therapy. But the child who spend most of her weekend toe walking still needs therapy. 

Tomorrow is what my tummy is knotted about. We have been waiting since October to get into genetics at Madison for our second opinion and tomorrow is the day. Brent has taken off of work and we are going to spend some family time together around the appointment and then meet up with some friends.
A lot of that last 3 years has been about waiting. When all of this started I figured we would have it all figured out by her first birthday... What I have learned over the last three years is that God does a lot of work in the waiting. I have had to trust in Him in ways like never before in all of this and the one thing that I know is that He is using all of this for His good.
The past 24hours I have been thinking about Bible verses where God says to be still and He will fight for you. I have been thinking about the times God made people wait days, years, generations, but yet He had his timing all along. He had not forgotten about His people. When I get frustrated about the timing of everything I try to remind myself that God has perfect timing in all of this and there is a reason we have needed to wait.
This is not to say though that I don't want answers, cause trust me I do, I am just trying to not yell at God like a 3 year old demanding what I want at the moment but instead trying to learn the lessons I am suppose to learn in the waiting, but it is not easy.
I am realistically hopeful for tomorrow. There are so many ways it could go. They could look at all of the data and give us a diagnosis right there or it could be more run around. I don't have my hopes up too high for a diagnosis tomorrow, but at the same time I don't want to loose hope, learning how to be guarded hopeful has been something that I have been learning over the last 3 years. Doctors are not miracle workers, they are humans that do their best to help people and understand the complex human body. God has used these 3 years as a reminder that He is the one to have our faith and trust in, not in other people. I am not always so good at that.
So please join us in prayer that tomorrow goes the way God wants it to go. He has a plan.

Friday Jillian's feeding tube gets changed out. Brent and I were laughing about how much of a big deal that felt like at one point but now it is so routine in our world. It also helps that most of the IR team is rather amazing and they really care about Jillian. We see them at least every 3 months, and have been seeing them since Jillian was 4mo old so we have gotten to know many members of the team and are grateful for their hard work. It is to the point where Jillian knows what is going to go on for tube change outs and they really don't even bother her. Jillian and I were talking last night about our week and I told her she had tube change out on Friday and she was all excited for a new tube. She is such a goof. We are so blessed that she takes all of this as well as she does. I think in part it has to do with her amazing personality and how great of a job so many people at Children's do to help make all of this medical stuff a positive experience for her. Like this weekend, my mom and I were talking about wheelchairs for something unrelated to Jillian and she was there too talking about wheelchairs. We mentioned to her how when she gets bigger she will most likely need a wheelchair. The only thing she wanted to know was if it could be pink... sure little miss, we will try to get it in pink.

Brent and I were having a conversation the other night about potty training. Jillian gets 100% of her nutrition in liquid form between 10pm one day and 5pm the next day. That equals a lot of pee most days but only between those hours. I have a feeling right now that child would be living on the toilet if she was trying to use that to pee. We also have the thing that we do not have any bathrooms on the main floor of our house and her oxygen line does not reach to any of our bathrooms... Brent and I were discussing potty training and is she ready, are we just holding her back because we don't think she is ready, should we be trying to potty train her right before a new baby comes, are we letting her disability stand in the way, are we not working hard enough for this. There were a ton of questions and ideas going back and forth and really we had not come to a conclusion about what is best for her, until she looked at the two of us and said "I am not ready to pee in a bowl yet." There we go, debate over, feeling like a crappy mom about this situation... over. She was clear as day about what she thinks she can handle. If she is not ready for potty training yet then I am not going to push it. She talks about how when she is big she is going to pee in the toilet, I don't think she will be in diapers forever, but if she can calmly and clearly state that she is not ready for it, then we will wait until she is a little older to try. Sometimes while us grown-ups try to figure things out and debate things the smartest person in the situation is the child.

Jilli has also had some great one liners lately! The other day as I went to eat pudding she looked at my tummy and said "Sorry baby, she is eating pudding." Not sure why she was sorry for the baby in that moment. Brent told her to put her hands up to get in her highchair and I started singing Party in the USA and she looked at me and informed me that she did not find me very funny. She keeps us on our toes. She is also most definitely 3! She has had her fair share of time outs lately. Her big thing to say when she is in trouble is that she is not Jilli anymore. Even when she is being sassy as all get out she still comes around to be sweet. She will frequently sit in time out and make up a song about why she is in time out, or the other day I was talking to her after she had been in trouble and as I went to get up she looked at me and said "thanks for everything mom." Man my heart just melted. 

Jilli and her uncle Jason and Emerson

She was very excited to be dressed up like a cheerleader!

Crazy hair, no pants kind of morning, playing with her toys, just being a kid!

I love her little coat!

Jilli was watching Just Dance Kids videos on youtube and dancing to them. Jilli spends a lot of time doing sitting activities so we try to find creative ways to get her muscles moving a little bit, even if it is only for a few minutes. 

Jilli also love Heidi Songs. I used them a lot teaching 4K and now she loves doing the letter and color ones. She thinks she is hot stuff too when I let her do the sight word ones. I know she is not learning the sight words at this point but she loves dancing to them.

Cosmic Kids Yoga! Jilli loves doing yoga and these are stories told by doing yoga. some of the moves are way too hard for Jilli but she loves to try!

Uncle Seth was teaching Jillian how to play video games this weekend!

Can't

Yesterday Jillian experienced the first time where she can not do something because of her special needs. At this point this is not common in Jillian's world as we try to adapt as many things as we can for her and with her only being 3, a lot of what she wants to do is within her realm or she does not realize that she can't do it (she thinks she jumps, her feet don't leave the floor, but in her mind she jumps like everyone else)
Now there are things that just the nature of being 3 she can't do. She is not allowed to be in the kitchen when I open the oven. She is not allowed to walk in parking lots by herself (actually she is still almost always in her stroller or carried in parking lots). We don't let her play in the bath without someone watching her... but those are all common things 3 years olds can't do. Yes sometimes that makes her really mad (mainly the not being in the kitchen while I open the oven because she like to make storage container towers while I cook) but they are things I would not let any 3 year old do, disability or not.
Yesterday was the first time she was laying on the floor crying because of something her disability keeps her from. Someone had given her a pair of shoes a while back that are sparkly but don't work with her orthodics. Just the shape of the sparkly shoe in general will not work for Jillian. They had originally been put in the bin with all of her shoes downstairs but as I was cleaning stuff out the other day I decided that it was silly to keep these shoes that she could not wear in with the rest of her shoes so I put them on the stairs to put into storage since we don't know if we are having a boy or girl yet and maybe our next child will be able to wear them. Really I did not think much about it. Jillian needs really specific shoes, she also needs clothes that work with her tube, its not the first time I came across clothing that does not quite fit her needs, it just is what it is. Most of the time however I put these things away (or don't buy them) without Jillian ever noticing them.
As we were getting ready yesterday Jillian noticed these shiny shoes sitting on the stairs and wanted them on. I explained to her that they would not work with her orthodics and that we love how much her orthodics help her feet. The tears started to flow and flow about how she loved these shoes and wanted to wear them. Honestly it broke my heart a little, not because my child needs to have all of her wants, but because I was telling her she could not do something because of her disability and it was the first time it was emotionally hitting her. It was the first time she was noticing.
There are going to be things in her life that oxygen, feeding tube, and muscle weakness are just not going to work with. Eating food for her is a really bad plan (to her it is normal that she only "eats" meds, it does not bother her), running a marathon would be very difficult for her, the logistics of some things just don't lend themselves to her needs, however there are so many things that she CAN do.
As I was thinking about it more today I was thinking about how we all have things in our lives we can't do for one reason or another. Maybe it is physical limitations, maybe it is fear, maybe it is money, we all have things that stand in our way, and you know what, thats ok. Not everything in this world is for everyone, and that is alright. Its not the end of the world that she cant wear these shoes, just like it is not the end of the world that we wont do our gender reveal of this baby with balloons (I am deathly allergic to latex). We adjust our world and honestly we are a lot better of a person if we figure out how to go with the flow of life. If we figure out that the world is not all about us. That we are not going to be able to do everything in the world and that is ok... it is just our job to do all that we can with the life we are given, and that is really hard to do if all we ever look at is the things we cant do and forget all of the wonderful opportunities that we are given each and every day, no matter our ability.  

 

10th

Today we did a goal review and re-eval in PT with the Peabody test. We look at that test about every 6mo or so and see how Jillian has grown. In two areas she got 5 more points then last time, in another area she stayed exactly the same. Jillian's paperwork needs to be sent to the state again asking them for more PT sessions (for the last 6 months they only approved us for a total of 6 session total... crazy!) This time we are asking for her therapy to be moved up to hour long sessions because we are working on endurance and an hour would give us more time for breaks when she needs them but also more time to push her (she currently goes for 45min) Yes a "typical" 3 year old could play for 45min and go, go, go but it is still hard for Jillian to do motion activity for "long" periods of time.
Jillian's overall score on the Peabody went up and she is now in the 10th percentile!!!! For a child who started out around the 4th percentile (around 20mo old), 10th is a huge improvement (yes I understand percentiles, I am a special ed teacher, I know 10 in reality would have most people upset but we are being positive here). We were also able to tweak some of her goals. She works so hard and I am so proud of her. Today her body started giving out and even when she could not walk anymore she crawled to finish the task she was doing. She is a rockstar!

Otherwise things around here are same old, same old. We are trying to get some organizing done around the house which means at the moment there is just crap all over the place! I have been working on putting away and organizing laundry for Jillian and myself. I HATE putting away laundry.  Frankly I would rather clean the toilet! I find it boring (Jillian and I try to incorporate dance parties into laundry folding) and like it takes forever. It is one of those tasks were frequently my ADD gets the best of me and it ends up half done with a mess left over. Since I am reaching a point where my "normal" clothes are not really fitting anymore (I have really "popped" in the last few days) I needed to do some closet rearranging which also prompted working on cleaning out closets of things I never wear (I am normally really bad about getting rid of clothes that don't fit, I just hold onto stuff in case I might wear it again...) and getting rid of clothes that I have not fit into since before I got pregnant with Jillian (I went from a size 14 before Jillian to a size 4-6 after so I had an entire wardrobe that no longer fits, the weight loss was a mix of a ton of puking while pregnant followed up with taking care of a sick kid). I also went through Jillian's clothes and she is now officially wearing more 18mo clothes then 12mo!!! Pants are still really hard fit on her and she pretty much exclusively wears Carters because most 18mo pants from other places are wide and short (however a lot of Carter's 18mo onsies still come to her knees, but in some of their t-shirts I have had to go larger to get over her tube). Little miss has her own shape... she is such a girl!
Last week Jillian got to go with me to my OB appointment. I told her she would get to hear the baby's heart beat and she was all afraid that it was going to be too loud and hurt her ears (this is the child who plays her i-Pad on mute 99% of the time, even when watching movies). My OB decided that she wants a 3D ultrasound for this baby because of all of Jillian's stuff. Not that Jillian's 20 week ultrasound showed anything (not to say it was not a traumatic experience, they thought her one leg was misformed and a lot of people were running in and out of the room only to figure out they measured wrong...) but they just want to be a little more cautious this time around which I appreciate. We also did the quad screen and that came back normal. I really don't expect any prenatal tests to tell us anything in relation to if this child will have the same thing as Jilli, and frankly even if this child has the same "thing" we might not know at birth or for some time. It has been 3 years of watching things develop with Jillian so only time will tell, my only big hope is that if this child has what Jillian has that we get some things in line faster then we did with Jillian (like feeding tube and oxygen before both of those problems get as bad as Jillian was before we were able to get her the help she needed). I am thankfully starting to be able to eat more which is really nice, I really felt like I had the stomach flu from October through December. Some days are still rough... I laid in bed last night just praying to keep everything in but it is not as bad as before. The complete and udder exhaustion is not as bad either, before just the thought of running to the store made me tired but I have gotten out a little bit more. The hard part is that I see other people who are pregnant and able to just keep going with life and I feel really bad that it hits me so hard and I feel rather useless while pregnant. I don't like using it as an excuse, I am not that type of person so its a pain when I can't do things because it is just really hard work for my body to grow a baby and I just have to accept that it is only 9mo and the people around me love me enough to understand. I do what I can when I can and when I can't I try to remind myself that we all need times of rest in life and maybe God is using this time in mine to make me slow down a little more.
As I am writing this I am loving listening to little miss play in her play area. Truly one of the best ideas was rearranging our main floor and gating her play area off. The toy mess stresses me out less when it is all contained in one area. I make her clean it all up every couple of days (she has to put one thing away before getting something else large out) but it is not a big deal if she wants all of the little people stuff out for a while because it is not in the middle of my living room. Little miss is also convinced she is Aurora today because she is wearing pink (a pink hoodie and sweat pants cause its cold!)
Funny story of the day... I was dishing out Jillian's meds this morning and she walked into the kitchen and asked me in a very preteen voice if I had any friends! I informed her that yes I do infact have friends (this is not the first time she has asked or insinuated that I don't have friends... thank you child!) I then asked her if she has any friends. She said yea, I asked her who. She stood there with a pondering look and then told me all about her friend Caroline and how they play together. Then she went on to tell me about her friend Jolie and how she wants Jolie to come over. It was sweet listening to her talk about her friends. She also talks about how her therapists are her friends.
So thats life around here right now!     

Her was making "formula" and dishing it out with a syringe. Brent's grandma bought this for Jillian before she died and grandpa saved it and gave it to Jillian for Christmas. It makes me smile and think of grandma

cuddling in bed. She thinks biting her toes is funny

This bird flew into our sliding glass door on Thursday. Jillian named it "little red bird" I thought for sure it was dead

until it got up and walked away. It took it about an hour and a half from crash to walking so during that time Jillian was very interested in the bird and what it was going. She wanted me to put it in my van and drive it to the dr and then to its daddy. She also wanted me to feed it a snack of chicken...

Baby bump! I am not huge on bump pictures, I dont have many of them from Jilli but I try to take one every once and a while

Afternoon cuddles after therapy today. Monday afternoons are low key here after therapy

Happy New Year!

Happy New Year everyone!


We had a rather low key celebration which was perfect for us. Thursday was oxygen delivery day so once that came we headed into my parents house. Dan joined us and we had home made tacos for dinner in my grandma's homemade cornmeal shells. We then all just hung out. Around 11:35 Jillian walked over to my mom, stole her blanket, laid on the floor and went to sleep. As soon as midnight hit we put her in bed and Brent and I went to sleep also.
Sleep has not been my bodies' favorite thing this pregnancy (morning sickness more intense this preganacy,  up for a couple of hours most nights just wide awake which did not happen til the very end with Jillian, and baxton-hicks have already started which waited until 25ish weeks with Jilli; I just keep reminding myself it is worth it for this baby and I wont feel this way forever) I was up at 5:30am on New Years Day....
We decided to make it a day to spend with others. We started in Kenosha and drove to Fort Atkinson to visit with Jaime, Jason and Emerson before they headed home from the hospital. Jillian got to hold Emerson again which made her very happy. If you ask Jillian what she is doing in 2016 she will tell you that she is going to Disney World with Emerson. We had to burst her bubble on that one, no Disney trip for us this year, not with me being pregnant and then having a new baby. We keep trying to convince her that she really wants to wait until Emerson and our baby are a little bit older before Disney World. Can't fault the girl for having dreams!
We then drove to Children's to visit Jillian's friend Caroline. She was in for some testing and I know what it is like trying to keep a kiddo entertained when you are there for days for testing when the child otherwise feels fine. Caroline and Jillian had a blast playing play-dough and coloring. These two little girls have many things in common and it is sweet watching them interact. It was nice to catch up with Caroline's mom too. There is just something about friendships with other families who just get our strange world of living at doctors. I met Caroline's mom through this blog and it has been nice forming a friendship over the last year with their family.
We then went to Mayfair to go to Build-A-Bear to use some rewards dollars to make bears for Tubie Friends. I feel so blessed to be able to help bless other families with Tubie Friends.
We then headed back to my parents house in Kenosha.
On Saturday we had a slow morning around my parents. In the afternoon we all went to the Kenosha Public Museum. Its not a big museum but Jilli had fun looking around. She really enjoyed playing in the kids area and putting a puzzle together in the art area.
Today we went to church, grabbed lunch on the way home, then went back to my parents to pack things up. Before we could leave my parents Jillian wanted to play one round of hide an seek. We then headed home and have had a low key afternoon.

Playing Play-Dough at Children's

We are looking forward to the new year and the new addition it will bring to our family, 2016 will be a year of growing!

Us holding Emerson!

 

Just hanging out!

Dancing to Heidi Songs videos with Uncle Seth