Thats a wrap!

We had a little celebration here yesterday morning after I told Jillian we were done with the plastic wrap!

We got three poop samples! It only took from Monday to Saturday night to get them, but hey we got them! The first  two poop tests came back this weekend as negative. The one was for c-dif which I was pretty positive she did not have and the other was for bacteria which also came back negative. Brent dropped off the third test on his way to work today so we will see what that comes back with. She has still been at the 7ml of laxative twice a day and really she should be pooping all over the place however her poop has gone back to its normal consistency. Her little body just likes to confuse us all!
I am just thankful that we got the three samples. It was a long week here wrapping her butt and it did not make her very happy (and I don't blame her!). The last test we were trying to finish needed to be done within 8 days of starting and I was getting stressed that would not happen so its a huge relief to have it done!

On Friday Jilli and I were having a chill day just attempting to get poop (we did not get any poop Friday). She was not in the best mood so we were kind of laying low. My dad and brother called me and they were 10min from my house playing disc golf and wanted to know if I wanted to join them for lunch. Jilli and I met them for lunch and then we went over to a park to play. I have never seen flying, biting ants before but this park was sure full of them! Jilli still enjoyed it but we did not stay for long (they really thought my dad was tasty!) Jilli had been asking to go to a park and play rocket ship (a few of the parks in Lake Geneva have play rocket ships) so we met Brent after work in Lake Geneva and she played on the rocket ship for a while and then we walked to Pot Belly and got dinner.

Saturday morning I woke up to Jillian yelling for Brent. He had told her the night before that they could play with her new kitchen in the morning and she was like a kid on Christmas morning who could not wait to play with their new toy. She came and laid in bed with us for a while and then she just could not wait any longer so they went down and played kitchen. During the day Saturday we worked on cleaning around the house and a few house projects. Jillian actually took a nap! I went to get the vacuum and turned around and she was asleep on the couch! Saturday afternoon we did maternity pictures in the same park that we did Jillian's. Our friend Jenny took the pictures and Tim made Jillian smile! After pictures my parents met us all at Spechers for dinner (we did pictures in the park next to Spechers). After dinner we all came back here and Jenny edited pictures and the guys had a fire in the back yard. It was a really nice evening!

Sunday morning we had church and then a picnic with our small group at Pets. Jilli loved the pretend log cabin and she even got Brent and I on the teeter totter! Pets holds so many great memories over the years (my parents use to bring me there when I was little, Brent and I met there at a Boy Scout picnic, we had a picnic there the weekend of our wedding and many dates there). Jilli got to try out her new cooling neck band from Caroline. It really helped to keep her cooler (Jillian was full of sweat just from the car ride over and we had the ac on) We were there for a little over 2 hours and Jilli had three times of 15min each were she played at the park, the rest of the time she spent in her stroller coloring or playing iPad. By the end her legs were so tired she could no longer walk. We went over to my parents because while we were at the picnic they took my tires to be balanced because I got them rotated and they were not properly balanced so that needed to get fixed so they helped out by dropping my car off and picking it back up for me. Once we got to my parents Jilli said she was too hot to be outside and needed ice packs to help cool off. Mom and I ran to Kohls looking for nursing tanks but instead found a bunch of 2T t-shirts on clearance for a couple bucks each and she has started to move into some 2T stuff (sometimes 2T stuff is skinnier then 18 or 24 mo stuff so it fits her better). We grabbed some dinner and then headed home. Jilli fell asleep in the car around 8pm. She woke up for a little bit around 9:30 and then again at 10. After 2am she woke up for about an hour and was really upset that she could not go outside and play right then. I am not sure what that was all about because at first she was mad that bees need to be outside so I am thinking she had a bad dream about bees and then all of the sudden it turned into her being mad that we would not take her outside in the middle of the night.

We are getting close in the count down to baby.  I have an appointment and ultra sound tomorrow. As I was typing this post I had to take my rings off because my hands must have swelled during the night because all of the sudden my fingers hurt. With Jilli I did not have to take my rings off until the day of delivery and I was hoping it would be the same this time. Its just a sign that we are getting closer to holding our little girl!   

Jillian helping me build her kitchen. My mommy taught me that girls can build things too and I want to teach that to Jilli as well

Shoulder Ride on Bumpa

She wanted to pump her legs just like uncle Seth

Ready to go down the slide

Playing with her kitchen with daddy!

Bat girl!

She fell asleep in her books

She decided she needed her head cooled off

She had to try on her new clothes over her clothes

The life around poop!

You know your a mom when your big goal of Wednesday was to take a shower and the closest I got was being peed on my 3 year old...

So Tuesday morning I got up and got everything ready to start wrapping Jillian's diapers. I went upstairs to start the process (Jilli was sleeping) and found her bed soaked in poop and pee. Like arms and back covered big mess. I woke her up so I could get her changed and cleaned up and the first thing she did was rub her eye with her poopy hand. Lets start this off by saying im fine with puke, ok with blood... I still struggle somedays with poop. I got her all cleaned up and put the plastic wrap diaper on her. She HATED it, and I don't blame her. I had an ob appointment and then we headed to Target. I needed to pick up meds. I also picked up a reusable swim diaper since that does not have the chemicals and fibers of a disposable diaper I figured we would give that a try. We also bought a potty chair. Not that I think potty training is happening anytime soon, but I figured hopefully I could get her to chill on that for a while and maybe catch poop in that. We went home and she sat on the potty chair for a while and played iPad. She wanted to get up so we put the swim diaper on. She peed in the swim diaper (for the test the poop can not touch pee) so she went back to the potty seat for a little while. She told me she wanted to get up and I told her that was fine but we had to do a plastic wrap diaper again and she decided that sitting on the potty seat was better then plastic on her butt. She sat on the potty until her foot fell asleep, which she had never experienced before so that was upsetting to her. After her morning poop in her bed we did not see any more poop on Tuesday. It was rather a long day for both Jilli and I.

Wednesday morning she got up and sat on the potty seat again for a while and then we put the swim diaper back on. She peed in the swim diaper but did not notice until the pee was running down her leg. Brent was working from home on Wednesday and needed to run to the store during his lunch break so he picked up a second reusable swim diaper. Jilli peed on the potty at one point but had no idea that she had peed until I looked in the toilet and noticed it (this is why she is not ready for potty training, she is fine sitting on the potty but she honestly still does not know most of the time if she has peed or not or if she has to go, the past few days has really enforced that. If she wants to sit on the potty and try, more power to her, but I am not going to push it as her body is not ready and it is cruel to expect her to do something her body is not ready for, she most likely will not be in diapers forever, this is just going at her pace) Wednesday we did not see any poop at all. We did have to use the plastic wrapped diapers a few times and she would just cry when we put them on her. For a kid who has a lot of medical stuff go one in their life and takes most of it with a smile its really hard to see her get this upset over it.

Thursday morning we got up and needed to head to Children's for her pulmonology appointment. They are doing work on the parking garage again and parking was a disaster! The problem with a 10:45 appointment is that most people are still in from morning appointments so the garage is really full at that time. Valet was so full it was hard to get to the parking garage and there was not even a place to leave your car for valet if you wanted to so we headed into the garage and it took 20min to get a parking spot! The roof was even full! We headed to pulmonology. The nurse came in and we talked for a little bit and then I went to put Jilli on the exam table before the doctor came in and noticed that she had peed all over the place and was dripping. The doctor walked in to me attempting to clean up the mess. The doctor and I talked for a little bit. I explained that I am not expecting Jillian to start running all over the place and having the typical energy of a 3 year old, that is unrealistic, but at the same time it is not normal for her to sit and look at a wall for long periods of time and tell me she is too tired to sit up and play with toys. The doctor agreed with me. Since bumping her up to 3/4lpm her energy level has started to go back up which I am really grateful for. The doctor said to leave her at 3/4lpm for a while and during the summer when everything is stable and her other areas are looking ok to try to go back to the 1/2lpm and then we will know based on how she does with that what flow rate she needs when multiple areas are not having issues at the same time. We talked about her Sunday afternoon and the doctor agrees that it was an allergic reaction. For now we are keeping our follow up appointment that we already had for October but if other things come up then we will go back sooner.
On the way home we stopped at Target to pick up a prize for the class that won the coin war at school. Jilli picked out pencils. We then went to school and Jilli got to put them in the kids cubbies which made her really excited. We came home and she sat on the potty chair for a little bit. Then she wanted to go outside. She has been asking for days to play outside but I wanted to give her lungs some inside time after Sunday, but yesterday I agreed to go out partially because I knew we needed to leave the house in a short amount of time so she would not be outside for long anyhow. We got outside and she played for about 5minutes and then she pooped!!!! I brought her up to the bathtub and had her stand and I took her stuff off. I got all of the stuff out that the poop needed to go into and started scooping the poop into the different containers. Just writing that is making me gag! Brent got home and I yelled for him to come help. While I was playing poop scientist he worked on cleaning her up which was a hot mess at this point because poop had run down her legs. I got everything where it needed to go and Brent got her cleaned up and then it was time to leave for dinner.
Brent's grandpa is in town and every time he is up we always go to dinner at Cracker Barrel with him and my parents and brother. Brent and I have been looking at different special baby dolls to get for Jillian as a gift when her sister comes and we walked in last night to Cracker Barrel and they had a bunch of the stuff for their baby doll line on clearance 70% off! The dolls were all full price but we were able to get her a doll, ballet set for the doll, carrying case and play kitchen for less then it was going to cost for just a Bitty Baby. I am really excited because Jilli and Brent's grandma always use to look at these dolls together so it means even more that we got one of them for her. I am also excited to have one more thing checked off my list of things to get done before the baby comes. Dinner with grandpa was really nice. It is always great to see him and he and Jilli enjoyed playing the peg game at the table together (Jillian's rules of how to play lol)
So this morning Brent left the house with two of the poop tests in a cooler. The third test needs three different poop samples so it is not finished yet, but it feels good to have two of the tests done. He stopped at Children's on his way to work and dropped them off with the lab. Hopeful she poops twice today so we can finish the other test up! I think everyone here is ready to put the plastic wrap back in the drawer (I literally have been carrying a box of plastic wrap and stuff for poop samples in the diaper bag with me this week!) Yesterday the pulmonologist and I agreed that she does not have c-diff, which is one of the things that they are testing her poop for. I had c-diff in collage and there is no way with c-diff you would go a day without pooping. I am thankful she does not have c-dif, that is not something I would wish on anyone and it took a long time to get rid of it when I had it and it was very painful. So we will see what the poop samples come back to say. We are still waiting for all of her blood work to come back too. I also have not heard anything more from genetics this week, or about our referral to endocrine. If I don't hear anything by Monday from endocrine I will call her ped's office because normally when they put a referral in I get a call within a weekish time.

So here is to hoping for more poop today!

This is what I walked into Tuesday morning

If you are going to plastic wrap a diaper might as well make it festive right!?

I figured I should test out our new car seat so I know how to put it in. I wanted a car seat that was easy to install and I don't think it could be much easier then this. I will probably blog about the car seat at somepoint because I am rather impressed with it!

Jilli wanted to sit on my lap and play piano

The she went to playing foot piano

putting pencils in the cubbies at school

Loading all her tools in her car

The poop lab

Jillian and Great Bumpa. She loved getting to play with him!

Jilli and Seth having a battle in Cracker Barrel

Plastic Wrap?

Well things may get interesting here with the line that started from the lab tech "you need to wrap her diaper in plastic wrap..."

We just keep chugging along here! Sunday morning Jilli woke up in a good mood. We went to church and for the first time in weeks she stood for two of the songs (we do three). Jilli loves singing in church so it was great to see her be able to participate for 2/3 of the singing.
In the afternoon we had an outdoor graduation party to go too. Jilli did well at first but then I could tell by the look in her eyes that she was starting to have issues (a dog did come up to her and there are a lot of flowers and plants where we were). Everyone else started to comment how she looked tired and needed a nap but I knew the look was that she was not feeling well. Brent put her in the car and she told him she felt sick. We asked her what was wrong and she said she had coughs stuck in her and her lungs hurt. I took her over to my parents where we keep a pulse ox and neb. She told me she needed to lay on the couch and rest because she was sick. This is not normal for her, however she is getting better about communicating when she is not feeling well. Her pulse ox was 92 (if she stays at or below 91 while resting with respiratory symptoms we go Children's) I started a neb. She rested for a while and her pulse ox started to come back up. My dad gave her a bath because she was insisting that she needed one. She had fun in the bath but then after was really lethargic and her pulse ox dropped to 91. She rested for a while (over a half hour) and then started to perk back up. We left my parents around 7:40 and Jilli did not even make it half way home before she was asleep. She slept until 6am this morning! She was out!

I started my day by sending a message to her ped letting her know how the weekend went and about the black in her stool and her trouble breathing yesterday. The nurse called me back this afternoon and said that they want pulmonology to get us in ASAP. By the time I got off the phone though the pulmonology nurse line was done for the day so I will call first thing tomorrow to see when they can get us in. We don't have a follow up scheduled with them until fall but her ped wants Jilli seen sooner then that.

Jilli had PT today. We talked about how she has made some gains (her stair climbing is getting a lot better) but how her endurance has gotten shorter. There were several times today were she got silly doing stuff as a way to say that it was too hard. By the 45min mark she was done and spent the rest of the time laying in a wrap swing. Her pulse ox also took a couple low dips too. We did calmer activities today.

Jilli and I then went to the daycare to count coins from the coin war. While we were there I got a call from Jilli's GI doctor (I left a message for the nurse this morning) The doctor said that the nurse was not there today but when the dr noticed I called she knew that something was up if I was calling on a Monday morning after talking to them on a Friday. I explained what was going on. She is confused like the rest of us. She decided we should do a stool sample and blood work to start with and then go from there. Getting blood drawn on Jillian goes a lot smoother at Children's then at our local places so Jilli and I headed to Milwaukee.

Jilli slept in the car the whole way to Milwaukee. Once we got there they called her back and the first person look a look at her vanes and could not find any so he called for a second person. She was able to get it in one poke with a little digging. Jillian did such a good job. We talked about how the band was giving her arm a hug. She said at one point that it hurt but she was pretty calm and just held my hand. She liked watching the blood come out (she has really been into blood, bones and muscles lately). When they were done she got to pick out a band-aid and was all excited to get Big Bird (we watched several Sesame Street clips last week about going to the dentist). They then brought in the info for the stool collection. Test 1: Get poop from three different bowl movements and put it on a card and leave them at room temp Test 2: Get poop and put it in small container and leave at room temp for up to 24hr and refrigerate for up to 4 days Test 3: Put poop in special container filled with red liquid and fill it to a certain point and then put in the fridge for up to 36hr. Oh and the poop can't touch her diaper... this is where plastic wrap comes in... we have to plastic wrap her diapers so she poops on that and not the diaper as the diaper can interfere with the test. This morning (before GI called) Jilli had one poop that was very thick with some black specks and a second one that was watery and running down her legs with black specks in it (she did not poop at all yesterday and is still on the 7ml of laxatives twice a day). We will see what tomorrow brings for poop! We have multiple things that we have to do tomorrow (OB appointment, pick up meds, ect) so it could be a really interesting day to day the least!

Today she did play a little bit. Not as much as Saturday but better then it had been. She loves to pretend to drive and loads up her baby doll in its car seat and packs all of her little bags with stuff and puts them in her "car" (she just sits on the floor) and then she invites Brent and I to join her on her trips. I love watching her imagination. She also did some school work this morning. She is working hard on learning her letters and shapes! I love her love for learning.

I did not hear anything back from genetics today about if they figured out the insurance stuff. GI did tell me that they talked to genetics as well and they said they would see what they can do (GI said she told them that we have been waiting a really long time and we really need to figure out what is going on) but that there is a lot of demand for this clinic but they just lost another doctor... If you have a genetics degree I bet you could get a job really easily at Children's right now!

Right now she is watching Silly Songs with Larry. You can tell the day has taken a lot out of her and I think we are going to head upstairs and cuddle. We both need all the rest we can get before diapers+plastic wrap+poop starts tomorrow!

My pretty little miss!

Jilli taking her neb yesterday afternoon after being at the party. You can tell by her eyes she does not feel good

Jilli after her blood draw today showing off her band-aid

I just looked down and noticed this is how she was laying

Poop and energy

Oh some days as a mom are just fun lol!

Yesterday morning I called GI and they had a couple ideas for us:
1. Up her laxative from 3-4ml 2x daily to 7ml 2x daily (Thursday and Friday we had given her 5ml 2x a day)
2. Give her a suppository daily until we see good poop
3. Consider upping her CoQ10 if the first two don't work in the first two days

So yesterday Jilli and I went to Target to get suppositories, a cheep shower curtain and shaving cream. We came home and I tried to give her the suppository but it was not working with one person and thankfully Brent got home and together we were able to get it in. We then put her on the shower curtain that was taped to the floor and gave her shaving cream to play with on the shower curtain. It did not take too long before the rumbling started. She pooped but only the amount of one days worth.
While she played with shaving cream I called Children's billing because genetics sent me a message that they could not do the pre-auth for the re-run of her exome sequencing because the system only had her state insurance listed and not her primary. I called billing and they said they had no idea what genetics was talking about because on their end they could see both, so then I contacted genetics again. While I was taking care of that Jilli decided to roll in the shaving cream so then I took her up for a bath.
My cousin Jake came over to work on our lawn mower and hang out. I was not feeling well last night (contractions and trying not to get sick all over the place) so it was a low key night. Jilli cuddled on the couch with Brent and I and started complaining of being hot. She was overheating again... it was not like fever overheating, its different. After a little bit we got her to cool off.
Yesterday as the day went on she started having more energy then what we have been seeing. It was really nice to see my 3 year old play with her toys! I think the up in oxygen is helping her.

This morning we gave her 7ml of laxatives. By 1pm she still had not pooped any more so it was time to give her another laxative. Brent helped me give it to her before he left for his brother's graduation. Jilli kept telling us "no more butt medicine." Yesterday she though the idea of medicine that went into her butt was funny but today after having gone through it yesterday she no longer found it funny. After she just hugged me and said that she was upset because she told me no and I did it anyhow. I explained to her that mommy had to do it to help her and that I never do anything to hurt her but sometimes some things we have to do hurts. It crushed my heart.
She then grabbed onto my neck and held on and started saying that it hurt. It took a lot of pushing and was painful for her to get the poop out. I felt really bad for her. She just held onto me and said she needed me. She pushed about two days worth of poop out. It once again had a good amount of black chunks in it and was the consistency of water.
Since pooping she has been laying down. I asked her if she wanted to watch a movie while she rested and she said yes. She is cuddling next to me with a blanket while I type this.
This morning she had good energy and stamina for her! She helped to clean up her toys and she helped me get some toys ready for her sister. Brent and I assembled the new Mamaroo this morning (thank you to my mommy and daddy!). We are a month away from having a baby so we are really trying to get things done and make sure everything is ready! This morning I worked on cleaning the living room and getting different things put away.

I am hopeful for more poop still. I am hoping the black chunks stop and that whatever is causing them stops. It looks like Monday morning I will be calling GI to figure that out. I am thankful that the oxygen looks to be helping. Her pulse ox is looking better too! We just keep chugging along here!

Jilli at the dentist on Thursday

Jilli resting

Hanging out!

Ok we are a little goofy sometimes!

Brent building the Mamaroo

I think we might have a few toy stethoscopes! This is not even all of them, just the ones she has hanging on the gate!

How the plan is going

I am sorry now if I sound whiny... At this point tonight I am a little whiny... I'll own it :)

1. Started the day by talking to pulmonology. They called me back on the way to Children's. They want us to up her oxygen to 3/4LPM. Hopefully this helps. I need to figure out how long a tank lasts now... Thankful that they were quick in getting back to us

2. Jillian's dental visit went well (once we got there, oxygen decided to come early, my brother was coming to wait for it and instead the guy showed up right as I was trying to leave thus making me get out of  the house later then I wanted, plus my poor brother was just about to my house so he had driven all that way for nothing, and then I had to stop for gas because I did not realize how low I was and then proceeded to hit every red light on hwy 100 between Layton and Watertown Plank) Even though it is still in the Children's system I still had to fill out background paperwork which for Jillian is not a fast thing. We got back into the room and they did a great job with Jilli. She did amazing! At one point they were using a tool on her teeth and she very calmly told them that she was done. They asked if they could have three more seconds and she agreed and then once their three seconds were up she closed her mouth, but for everything else she did great. She was excited to sit in the chair by herself. The dentist said her teeth look great. There are a few alignment issues, probably from the passy, but that is what it is. It helping her keep stomach acid in her stomach is more importation to me and while the dentist mentioned that it is not great for her teeth she was not a jerk about it. She said that overall her mouth looks really good! Because of that they did not feel like they needed to put anything on her teeth or do anything with any liquid. They gave me an option about one thing but said they did not think it was needed at this time so I said that I would prefer to only put liquid in her mouth if we have to and they agreed and did not push the issue. Yeah!

3. Genetics sent me a message back that their receptionist schedules visits for the clinic for "this" in three month increments and that we are on the list but she is not sure where Jillian's name will come up but that we should be contacted in the next few MONTHS!!! My blood pressured might have went up just a little reading that. I don't think you can call it triage if it takes this long! I also asked about the re-reading of her exome sequencing and she said that she can submit for approval from insurance for that but she thought our only insurance is state so she told me she does not think state will pay. I am thinking that our primary insurance will pay... hopefully! I don't know if we will have an appointment with genetics for the re-run, or how long it takes to get insurance approval or re-running it takes...

4. As I was leaving dental I went to use my phone to call GI because Jillian has not pooped today and her poop yesterday was very small and thick (not normal) so I am thinking we need to do something to clean her out... however when I grabbed my phone the home button was so hot it hurt to touch and the phone had turned itself off and would not turn back on. I went to the car to try to use Jillian's ipad to call Brent however I could not get it to connect to the Wifi so I drove to Starbucks where is also struggled connecting to Wifi (we never use Jillian's small iPad on Wifi in fact Wifi is normally turned off) I tried from the Target parking lot but could not get it to connect so I went into Target and finally got it to connect however it would not let me use iMessage or Facetime to contact anyone. I finally ended up getting Facebook to work (mind you this had been almost an hour of trying to get this thing to connect to Wifi and let me contact someone). I sent a message to both Dan and Brent since they work together and begged for help. I did not want to drive an hour home 8mo pregnant with a medically complex child and no phone. They got my message and Brent came over to Target as Jillian had one of the worse melt downs she has ever had because I threw away my receipt from my drink because she told me she was done playing with it (I think everyone in the store heard my child screaming...) She has had a couple of melt downs lately that are just odd for her... it is just part of her body being off. The home button was still really hot but Brent did his IT stuff and got it to turn on for a little bit but we decided that having a phone the overheats and turns off is not a safe plan and I pay for Apple Care and we were by the Apple Store. So we headed over to the mall. We checked in at the Apple Store and the said the wait might be up to an hour. We had dinner plans tonight with Brent's family in Kenosha and at this point we knew we were not going to make those so we called and let them know. We walked around the mall for a little bit hopeful that it would be quick any maybe we could still make it to Kenosha and at least say hi to grandpa since he just got into town. By 7:30 they still were not ready for us. I went and grabbed a sub from Subway at that point because I had not eaten since 11am (I was behind a family were I am still impressed that hangry pregnant Amanda did not come raging out as a school age child was being beyond disrespectful to the staff at Subway and the mom was just standing next to her letting her child talk to the staff like that and hold up the line... but I stayed calm... annoyed on the inside but calm on the outside). Finally a little after 8 they were ready to look at my phone. The guy tried to give Brent some stupid answers for the problem with my phone (Brent works with technology, you are not going to pull over something stupid like the guy tried...) The guy then took my phone into the back room. At this point Jillian had enough. She has basally been sitting since we left the house at 12:30 and it was now after 8. She had done really well except for her melt down at Target and had sat like such a big girl and not made a fuss while we waited for over 3 hours to get my phone looked at, at this point she needed bed. I honestly was done too. My body hurt from walking the mall. Brent gave me his phone to have on me to drive home and Jilli and I left. The whole way home my body decided to tell me it did not like my choice of Subway for dinner. In the end they swapped out my phone after Brent made it clear to them that me not having a working phone was not an option (I had just got the phone the end of September) He takes good care of me! He just got home a little before 10, just in time to hook Jilli up for the night (she fell asleep in the car) This was not how I wanted to spend my night!

5. Because my phone was dead when I came out of dental I was not able to call GI before they closed for the day so that is on my to-do list for first thing tomorrow. We need to get poop out of this girl!

So that was my day. I am ready for bed now and here is to hoping tomorrow is calmer. Sometimes there are just days... and today was one of them!

Plan

I just talked to Jillian's ped. We came up with a plan...

1. Call pulmonology tomorrow and talk to them about increasing the oxygen, her doctor thinks she is needing more.

2. She is putting in a script for endocrine because of the overheating (Jillian's friend Caroline also gave her some cool new stuff to help with cooling!)

3. We talked about neuro since that would be a logical office to contact in this however Jillian's neuro left and we are not established with anyone else. She is seeing a neuromuscular doctor in July however we have not seen them yet. If things continue we are going to contact neuro to see if they can have one of the other doctors help us until then.

4. I am going to send a message to genetics. We need to schedule an appointment to have her exome sequencing read again (the plan is to do this yearly) and I still have not heard about the clinic for "this." I contacted them on 2/18... they said it could be 2-3 months... I have not bothered them since then. I feel like I have been very patient in this "triage" but we are almost at 3 months!


I feel better having a plan. I know there are no simple answers with Jillian (although sometimes I might pout when I don't get answers as quickly as I want...) but I feel better when we have a plan. No plan feels like we are just wondering around.

The dentist office at Children's also called me yesterday. Rehab put a referral in for that a month ago and told me it would probably take a few months to get in. Dental called yesterday and said they have an appointment for tomorrow! We decided that having a dental check up at Children's was probably the best and safest option for Jillian (I talked to other special needs mommas in the area). I am so nervous about her aspirating!!! I am trying not to worry about it, but anything involving anything going in her mouth worries me. When we do tests with GI at this point I know her GI dr knows Jillian's stuff and she works hard to keep Jillian safe in testing... but I don't know this dentist so it is the fear of the unknown. I know I wont let them do anything that is not safe for Jillian, but I'm still worried (I also don't feel like putting up with crap about the fact she cant have her teeth brushed with tooth paste and that she still uses a passy at 3) Its just one of those things were we need to just do it tomorrow.


Today Jilli and I went to zoo class (she has been signed up for this for months). Normally I bring the umbrella stroller with and she sits in that for center time but for carpet time she sits on the floor with the other kids, but today she told me she needed to stay in her stroller. She was right, she is needing help with core support. I am really proud of her for telling me what she needs! She still had fun, she just took zoo class at a slower pace.

After zoo class Jilli got to see her best friend Caroline! Caroline was in town for an appointment and they were staying at the Ronald McDonald House so we met them there and the girls got to play together in the play room (ps the Ronald McDonald House in Milwaukee is beautiful!) Jilli was so excited to see Caroline and the girls have a similar energy and stamina level so they make great friends to play together. Jilli tried to wear pretend Cinderella shoes... that did not work so well so we decided that Aurora's flats were a better choice. I am so thankful for Caroline and her mom being in our life!

Since we got home she has been resting watching a movie. Right now she is telling her baby doll all about zoo class. It is rather cute because she is reciting what the teacher did at circle time at zoo class.

Thank you for the kind messages that several people have sent about our current backslide. They mean so much! 

Jilli resting on the floor yesterday

I looked down yesterday and this is how she was on the floor

Painting

Sea Lion costume

Sea Lion face paint

Jilli and Caroline

The girls in the play room at the Ronald McDonald House

Whats up right now...

If you follow me on facebook you may have noticed that I have alluded a couple of times lately that something is up with Jillian. Something is up but its something we can't put a finger on what is going on and causing these odd symptoms.

-She has not pooped since Thursday and only pooped twice last week. We had found a good balance of meds where she was going every day to every other day, so this is a change. She had a skid mark in her diaper on Sunday but thats it. We have upped her laxative and still no poop. Soon we are going to have to go to the next steps in the poop plan which is no fun for anyone. (update... we did have some poop come out with lots of extra laxatives and it took a lot of work on her part and she was not happy, but we will see if it keeps going cause this is not a weeks worth of poop... also be glad you were not here for the smell!)
- She is a lot more lethargic. Jillian has never had the same energy level of her peers, but right now her energy level has gone down in comparison to herself. This started a little over 3 weeks ago and has continued. She has never been a bounce off the walls person but now she is spending significant portions of her day just sitting... not doing anything (not watching TV, playing iPad ect, just sitting looking at the wall)
- Her muscles are bothering her. She has laid on the floor multiple times lately crying that her muscles hurt. I am not sure if it is more of a pain or that her muscles are tired but a three year old should not be complaining about her muscles.
- Her muscle weakness has increased. Jillian has always fallen a lot, however she has been taking massive falls the past few weeks, to the point I am amazed we have yet to end up in the ER with a big injury. We took her sandal shopping this weekend and she asked us to strap her in her stroller because she kept falling out. This is a kiddo who we have rarely strapped into things (obviously we ALWAYS strap her into her car seat, I am a car seat safety nut) because she never tries to get out of things. Her muscles are not doing what she wants and it is frustrating her. She is needing more support from things around her and when you hold her it is like holding a wet noodle.
- She really struggled with body temp regulation this weekend. We tried to hang out outside since it was beautiful out (low 70s, high 60s) but even in shorts and a t-shirt she got overheated (note she was not running around, she was sitting in a chair and she and Brent played with a ball for less then 5 minutes). She got overheated in church on Sunday to the point we had to put ice packs on her. I am looking at different cooling options. She has always had issues with getting hot fast and sweating a lot but this was much more extreme then we have ever seen it.
-We have seen more of the overtired goofiness. Its different then her just being silly, its that tired slap happy. When she is like this her muscles struggle even more to the point it gets hard for her to walk at all.
-She is toe walking more. She never toe walked when she was younger but it has been increasing more and more along with her rolling her ankles.

It is to the point other people that know Jillian are commenting about how something is off. I was talking on the phone with my mom last night and asking if I was just crazy and making a big deal out of nothing and she said no that there were multiple other people around us that know Jillian well and know that something is off.

I try really hard not to over react with things with Jilli. We try really hard not to compare her to other kids but to only compare her to her and her skill level. This has been going on for about 3 weeks now and I just sent the doctor an email on Sunday night because I wanted to see if it would resolve itself. She has no signs of an acute illness (no runny nose, temp, cough, ect) but I wanted to make sure she was not coming down with something. If she is sitting and not having to move much she seams to be ok so if people are just casually seeing her they might not notice it as much, but at home or if you spend more then a few minutes with her it is noticeable.

Her PT brought up that this might be more warn out because some of her skills have grown, however the skill growth that we have seen has mostly been in PT and has not transferred to home. She has needed more breaks in PT then she was needing. Her PT said that she thinks whatever we are seeing now is related to whatever her overarching diagnosis is however we still don't have an official overarching diagnosis.

I sent a message to Jillian's ped on Sunday night explaining everything that we are seeing. Her response was to contact pulmonology if we think her O2 needs to be increased (I am not sure if that would help or not) and to wait to see what other specialists have to say once we get into them (we see neuromuscular in July and are still waiting to hear from genetics on when we can get into the clinic for "this"). When she has multiple system issues like this it is hard to figure out who to contact. This does not fall under one specialty and some of this falls under specialties that we don't have on our team. Whatever is going on is not just a random bunch of things going on, its is connected, but what is causing it and how do we help her? Brent and I have gone to the point of making sure that none of her meds changed manufactures to make sure that was not effecting her. Its one of those times were there is not a clear cut answer and to be honest its hard... its hard not having a clear cut answer. I know I should be use to not having clear cut answers by now, but when you see things change in your kid you want to help them. Its hard too because it is not like it is an urgent medical need... bringing her to the ER is not going to get me anywhere, that would be an over reaction, but something is off.

So for now I just support her and help her the best I can. I enjoy the extra cuddles since she is spending more time on the couch. I try to look for the lessons that God is teaching me in all of this. And I just pick myself up and keep going and trying to do the best things for her.   

She has been making a lot of "beds" for herself

She was sitting and reading books and then I looked over and she was laying on the ground... she was not sleeping, just exhausted

Starbucks with mom and dad. She is holding herself is weird positions in chairs right now and if the chair is not supportive she has asked us a few times to help support her

Her beach chair. After watching the Daniel Tiger episode where they make a pretend beach she decided she needed a beach chair at Grandma and Bumpa's house

Worn out! She fell asleep in less then 5min from laying down... that is not like her! She fell asleep last night around 9:30, woke up for a bit at 6 and then slept until 10

On a side cute note, this morning when Jillian woke up she was telling me all about how when Tinkerbell was in her mom's tummy her nickname was blanket but once she came out her name was Tinkerbell. Jillian currently calls her sister "Monkey Playdough" and we have been talking about how when the baby comes out mommy and daddy will give the baby a new name just like when she was in my tummy we called her "Princess Marshmallow" but when she came out we named her Jillian. It is cute listening to her try to make sense of this who getting a new sister thing