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

Restaurants

Last night Jilli and Brent brought me out for dinner for mothers day. This weekend we will be with family in Kenosha and it gets really busy for us on holiday weekends trying to see everyone so Brent decided a couple of weeks ago that he and Jilli were going to take me out last night so we could celebrate mothers day the three of us.
We went to a restaurant in Lake Geneva that I like. The waiter asked if Jillian wanted anything and I told him no, that she was good. As she is getting older more and more when we are out we are asked if she wants a drink or a small plate or food. We try to keep it simple and just tell them that she is good and does not need anything. The waiter last night brought her a kids cup of water with our drinks (he was just trying to be kind). After he walked away Jilli looked at the cup with a funny face and moved it over by me. She said "I a Jilli, I don't drink! I only eat meds!" She was really confused as to why he would bring her a cup. We explained to her that he was just trying to be nice and that he does not know that she does not drink but that it is ok, mommy will keep the cup by her. That was enough for her and she went back to coloring. I giggled a little too when at the end we ordered dessert and they brought us three spoons :)

Going out to eat we can't expect people to understand that she can not eat, it is just not something you come across every day. When waiters bring us water for her they are just trying to be nice and Brent and I just smile and say thank you and move it to the side. If a sever really pushes us to order something for her I will explain that she has a feeding tube and can't eat, but I don't feel like every person we run into needs to know she can't eat.

We have only had one issues so far with one place wanting to charge us for her being there even though she can't eat even after I explained that she would not be eating anything. I did a little educating and explained that I would not be paying for a child who can not eat and eventually they agreed with me. We will see as she gets older how restaurants go. It seams to be a split with older tubies where some enjoy going to restaurants with others because of the socialization, while others prefer not to go to restaurants. As she gets older we will gauge what she wants to do. Currently she does not care that we go to restaurants, she thinks they are a fun place to color and play iPad. To her it is normal that everyone else eats and she does not, she essentially has been NPO since she was 4mo old.


This morning we had a fun mommy and Jilli morning. We headed to the library for story time and then we walked around Lake Geneva and went to Starbucks. I love mornings like this with my girl! She is super cute and stylish today! She is finally fitting into 18mo shorts!!!

She had me laughing yesterday afternoon. We were waiting for the oxygen guy to come and he was later then normal (I was getting worried they forgot about us). Jilli started singing "oh where is my oxygen guy" to the tune of the Veggie Tales Hair Brush song. It was cute. A different guy brought the delivery and ask he was walking up I said to Jilli "lets not scare this guy by talking about blood, or any other bodily things!" She has really been into telling people about blood, muscles and bones lately and she has freaked a few people out.

Yesterday I did just a basic preschools skills "assessment" with her. I wanted to know where she is at right now since I knew she can name some of her letters and such but I had not sat down and figured out exactly which ones she knew. She knows 8 of her uppercase letters, 10 of her lowercase, she can identify the numbers 1-3 & 7, complete AB, ABC, and AABB patterns, and counted to 13 (she has counted to 20 before). I am so proud of how much she has learned. We do most of her learning by play and she also really likes structured school time but I am really laid back about it. I have a bunch of different things ready to go so when she wants to do school time so I just have to pull something out. I was talking with someone this weekend about how awesome it is that she is learning so much. Logically from an educational standpoint the amount of times she has turned blue or not had enough oxygen, or from the lack of nutrition when she was younger she should have some educational delays but so far she does not. From the 18mo old who did not even babble she has come a long way and worked really hard at it and I am very proud of her.

She loves her camera game! We decided to play a game together while daddy mowed the lawn

Last night she decided that baby Elsa needed to play too! I hope she is this good about including her sister in things too.

Baby Elsa gave me a back rub too!

My mother's day gifts from Brent and Jilli. I was at Bible Study last week and they went to the store and bought art supplies and he helped her to make the handprint art for me. She picked out the card because it has Minnie Mouse on it. They also bought extra supplies so Jilli and I can do a project together. My big gift is an Ergo baby carrier for the new baby! I am really excited to try it out.

She was just so excited this morning to have her picture taken!

It took many pictures to get her to look up at me and smile :)

She was very interested in the parking signs today. She gave it a kiss before getting in her stroller... silly girl!

Off to walk around downtown Lake Geneva. We also went over and looked at the boats in the water

Normal?

I have been accused a time or two (ok a few people have said this more then once) that I am overprotective of Jillian. At first I wanted to prove them wrong... show them... but as the years have gone on and I have become more comfortable as a mom and feel less like I have to prove myself to everyone (not perfect at this, I am a people pleaser at my core, but working on it) I actually am rather ok with being called over protective at this point.

I feel like if you were in my shoes you might do some of the same things, and maybe if I was in your shoes I would say that same things about me. But thats the thing... we are each in our own shoes and have lived our lives in different perspectives. I have seen my baby turn blue, handed her over to surgeons, held her down for tests that suck, and watched her be poked and prodded. I have had to make life choices for my child, and all of that changes you. It changes how you look at the world. There is no point to life events if they don't mold and shape you (you still have to be the one to chose its impact on your day to day life).

Sometimes I worry about being overprotective, and then we have weeks like recent and I realize again that I am doing my best to make the best choices for her. Life is taking a lot out of her right now. She tried hard to be go go go around others but Brent and I are the ones with her when everyone else leaves.

My 3 year old has laid on the living room floor twice this week sobbing that her muscles don't work they way she wants and that they were too tired to stand. It has broken my heart into pieces both times. A 3 year old normally does not have to think about their muscles and if they work or not... Jilli does.

I see how little things take so much out of her. She has been begging to go to a park and play and yesterday was finally nice. Brent has had a meeting for work every night this week from 5:30-7, so after he got done with his meeting we headed to the park. We played for about 20min. Part of that time was spent with Jilli sitting on Brent's lap on the swing. When we got home she was completely exhausted.

Life with Jilli is a balancing act. I want her to be able to experience the world and do the things she wants but I also see how it effects her body. For her when she does too much it is not that she is just a little tired, it is that her stomach motility slows down causing her to reflux more, her muscles get tired making it harder for her to breathe, her muscles in her arms and legs stop working or become very painful, and she becomes overall lethargic. Last week she told me one morning that she needed a neb, her lungs hurt. Her pulse ox was fine but she was right, she needed a neb. With her you can always tell how much she needed it by how much of the side effects she ends up with. If she is jittery and bouncing off the walls after she can go longer between nebs, but if she takes a neb and then hangs out on the couch for hours, she really needed it (no this is not the only way we determine if she needs nebs but it goes into it). Yesterday she told me I needed to take her pulse ox. She was right, on oxygen it was hanging out in the mid 80s (taken in multiple spots with an accurate hate rate). She sat for a while and we retested and then it was in the 90s. She was right, her body was off and not working well at breathing. I don't want her attached to the pulse ox but it is a good tool to help us gauge how she is doing when we need it.

We let her try things. You can tell by the bruises on her legs that she falls frequently, but we always encourage her to get up and try it again. Right now she is working on learning how to dress herself. We try to help her learn independence in ways that are appropriate for her.

I am on a special needs Disney group and this morning a question was asked about how you make the choice of what vacations things you do with your medically complex child. Everyone talked about how much planning goes into it, and how everything might fall apart but it is worth it to at least try. We try and do different things with Jilli, sometimes it works out, sometimes we have to cancel last minute, and sometimes it effects her a lot after and we know that for the next time that was too much.

Part of it too for Jilli is that it depends on the day how much she can do. Some days a trip to Target is too much for her and other days we can go play at the park. It depends how her body is doing that day and 3 years into it I am better at gauging and don't get as upset when plans have to change, but I get it wrong sometimes too. This morning has mainly been spent cuddling and her telling me her body is just so tired. Right now she is sitting next to me looking at books. I'm starting to wonder more if it is time to look into getting her a wheelchair for when we go to parks and such.

Jillian's toe walking is also happening a lot more. She has rolled her ankles a few times lately. It is really starting to worry me more. Toe walking should not be getting worse as she gets older. Her PT thinks it might be due to how low her muscle tone in her core is.

So if you think I am being over protective... maybe sometimes I am, but you know what, I do it out of the love for my child. I have to fight for her health and well being and sometimes others don't agree, but you know what, Brent and I do, and at the end of the day we are just doing all we can do give Jillian as many opportunists in life as possible and sometimes that means saying no to something so she is able to do something else.  

Doing a Neb, hanging out in her Children's Hospital of Wisconsin shirt. She is so proud to wear that shirt!

Chilling!

Saturday morning I woke up and my back was out... like cry getting out of bed out. We had people over that day to help us put our new fence up (which is about 95% of the way done... yeah!) Jilli and my mom helped out by washing all of the dishes!

Just laying on the couch... this is a common sight right now

Little miss ready for church on Sunday. She is my fashionista!

Jilli and Brent curled up watching the Magic School Bus the other night. I went to take a shower and came back down and they were pretending that Dupos were light sabers!

Jilli and her baby doll (she named it Emerson) She has been really into pretend playing that she is driving a car or an airplane. She packs her little bag and her baby. It is really cute!

I stopped at work yesterday and Jillian's teacher brought me this. They made it a couple of weeks ago when I subbed for 4K. It was really sweet that her teacher made the time to help Jilli make me a mother's day gift even though she is not there all the time like the other kids. Jilli had a spot all picked out when we got home of where she wanted it.

Brent and Jilli swinging at the park yesterday in Lake Geneva

Slide time! Those pebbles were really hard for her to walk on but she tried hard

This is how she has looked most of the day today

Getting closer! I had a dr appointment yesterday. I have not gained any weight in over a month but my stomach has grown. They are doing another ultrasound in a couple of weeks and hopefully soon they will schedule the c section! My mom helped me work on getting stuff ready for the baby this weekend!