ER for the second time

Its has been a long week!

We have been taking turns who stays home with Jillian this week. Friday Brent got it worked out so he could work from home. 

Thursday night into Friday was another long night with little sleep. Before bed Jillian vomited twice and I woke up to her during the night trying to hold more vomit in. 

Friday morning I got up and went to work. I got a text while I was at work asking where the thermonitor was and then a text conferming she now has a fever. She had yet to have a fever during this illness and i knew adding a fever 4 days in probably was not good, especially since she was so lethargic and now vomiting. I called the dr on my way home from work at noon. The nurse called me back at 1:30 and said they wanted us to go back to the ER. I knew they were right and that's what we needed to do but it made my heart hurt.

We packed her up and hit the road. Some days that hour long drive feels like forever!

We got checked in and they brought us to triage. They took her temp which was now normal however by this point her tylonal had kicked in. Her pulse ox was ok however she was crying when they took it. 

They brought us to a room. The nurse came in and checked her out and did intake questions (asked about why she does not have all her shots). 

Then a fellow came in. He looked at her and listened. He said she had diminished breath sounds on the left side. He said the supervising dr would be in. 

The supervising dr came in. She listened to Jillian. She said she did not need a chest X-ray... You could hear the crackle in her right lung. She could point to where the pneumonia was. While we were in the ER Jillian lost her voice and since has a very scratchy sounding voice that is hard to understand. 

The assumption is Jillian choked on the cauliflower on Sunday, irritated the throat causing the croupy cough, and then it took it a few days to hit all out pneumonia. Her current vomiting and fever are from the pneumonia. 

They prescribed a heavy duty antibiotic because of it being a food aspiration. They said the normal antibiotic for pneumonia would not touch it. Walgreens questioned the antibiotic since it is do heavy duty. 

We brought her home and she went back to laying on the couch. She and I  came up to bed around 8:30. I ended up being awake 80% of the night because she needed different meds at different times and she was coughing and vomiting so much. I did not realize home much vomit there was until she got up this morning and part of her pajamas were green from vomiting bile. This vomiting is not helping her lungs heal 

This morning she got up and cuddled. I looked at her ears and her hair is stuck to her ear because so much puss and wax is coming out. I tried to look in her ear and all you can see is puss. She now has probably developed an ear infection on top of it all. Her respiratory rate has varried a lot today and climbed to places I don't like. Her fever is still there and so is the cough.     

I am amazed at her good sprits. Yes she is crabby and wants to be held but she could be worse. While she cried as they did her tests yesterday she never pushed them away or tried to hit them. She offered body parts for different tests even though she hates them ( she gave them her finger for her pulse ox even though it scares her a lot) she has mainly hustled wanted to watch movies so our tv has been a nonstop kids show. 

Today my parents came over to help us out. I am so grateful. I have adveraged 3hrs of sleep a night this week and the dishes and laundry have been piling up. She just wants to be held and it is more important to me to hold her then clean. However with all the vomit some laundry and stuff had to get done today   

We will get through this too. It just proves once again that her body CANT handle food. Thank you to the people who have been praying for us this week or sent us kind words. It means A LOT! 

She wanted to take selfies last night. It made her smile. 

She just wanted to hug daddy's leg. 

The Thursday update

I stayed home with Jillian today...

Sadly the turn around that we were seeing yesterday did not carry into today. I woke up at 1:45am to that deep cough again. She was not due to have another neb until 2:30am. It is hard to watch your child have a hard time breathing and you should not give them another breathing treatment for another hour. I stayed up and watch her breath. I filled her pump at 2 and then gave her a neb at 2:30. I was up a few other times watching her breath.

She got up at 9am. She has since been on the couch. Her feet have yet to hit the floor and she is a two years old, not an age notorious for resting. She did sit up and look at books for a little bit, and we also drew on her magnadoodle for a bit. She loves when we help her to write her name.

She fell asleep for a nap at 2:20pm and slept until 5:15pm. That is really strange for my little girl who normally take either no nap or at most 1hr.

During the day her cough has not sounded like a dog barking however it is very unproductive. Her nose has started flow today. Thankfully it is still clear. She sneezed earlier and it got all over her passy, and she said "oh no!" and handed me her passy to clean it. She just looked so sad.

I have loved the little smiles I have seen today. She may have not moved much but she is still a content little girl. She looks like she feels like crap, and has wanted to be held several times today and I am privileged to be her mom and be able to hold her as her body fights.

We had to make the choice tonight to put her back on steroids. I really wanted to avoid that however her body was not making the turn it needed to and her body was working harder today and she was definitely worse today then yesterday.

Here is to hoping the steroids kick in and help her. Brent is going to work from home tomorrow so I can work in the morning. It is testing time of year and I really need to be there. I am so grateful his boss is letting him work from home. That means a lot to this momma!

Wednesday Update

This morning we started Jillian's neb at 6:15 because she was needing it. As I tried to take it off of her she woke up. She wanted to stay in her bed though and watch Mickey while curling up with her blanket.

She hung out on the couch until around 11:15 this morning and was just chill. She got up for a little bit at 11:15 and then went back to resting. When she got up she took her baby's clothes, listened to her heart and looked in her mouth and ears. That would be Jillian's world.

I took her to the doctor this afternoon. Her lungs were sounding good when we were there but she was still in the 4hr mark for her neb so her lungs were full of meds still.
Her doctor decided to send in a script for steroids but we are only going to give them to her if she is doing worse tomorrow then she is today. She got a dose of a steroids yesterday in the ER and she was just on steroids back in December. We try to really watch how much steroids she gets because it can mess with other things. We are hoping to not have to give them to her.
Her doctor said she needs to stay out of day care until Monday. Her doctor said normally she would have Jillian come back on Monday but she said to keep her out of the doctors office unless she gets sicker because there are so many germs there.
We are back home now and she is watching Disney Sing-Along-Songs Circle of Life. We have watched Me-Kee many times this week (Disney Sing-Along-Songs Disneyland). She is coloring a picture of Doc McStuffins. She is alternating between coloring and laying down since we got home. Hopeful that since she is coloring this afternoon that maybe she is turning the corner... I can hope right...

I was laughing at the dr appointment. I got my hair cut on Saturday and Jillian's doctor noticed. I just laughed... my kid's doctor should not see me enough to notice that I got my hair cut. I really like Jillian's doctor and she has been great for Jillian and really helpful, but it just made me laugh. I was reading a blog post this week from someone and they were talking about how you start to see therapists and doctors more then your friends that you had before having a child with special needs. How therapists and doctors start to know you better then other people. This is so true! Its not that we are not still close to some people but I really do see doctors and therapists more then most of my friends. I had not really thought about that until I read it and for that I am even more grateful for all of the amazing people that work with Jillian.

Tuesday=ER

If you did not read about the Jillian drama that started this week click here

My goal is to make this make sense... however I have gotten around 2 hours of sleep in the past 24 hours so please bear with me...


We had Jaime and Jason over for dinner last night and all was well. Brent was sore because he fell down our stairs going to our garage on Sunday night. Jillian and I curled up in bed to watch a movie around 9:00pm. We fell asleep cuddling around 9:30 (it has been a really long time since we had done that) and Brent moved her to her own bed a little before 10pm because she needed to get hooked up to her pump and drainage bag. Around 10:30 I sat straight up in bed to the deepest sounding cough I think I have ever heard. I was seriously confused by what it was when I first woke up. It woke Jillian up too but then she seamed fine so I tried to go back to sleep. Just as I fell back to sleep the cough started again. I could then hear her wheezing across the room.  Wheeze=neb time. As I am doing that Brent comes up and gets in bed. His pain had continued to get worse as the night went on and he was now writhing in pain on our bed. I asked him if he needed to be seen and he said he would be fine.
She continued to cough off and on. 2am came like normal, and the pump errored at 2:30.
By 6am she was breathing for crap again and really working at it. She coughed a few times and you could hear her wheezing intermittently. We decided Brent would stay home with her in the morning and as soon as 4K was done I would come home and try to get her into the nurse practitioner.
Around 8am, I had Brent check her pulse ox... 86! Crap! I had him call her doctors office to see if they could see her then or what they wanted us to do. They said she needed to go to the ER.
Brent took her up to Children's. They spot checked her pulse ox and it was better. They did a chest x-ray and so far that is clean (it typically takes a few days for something to show up on them after she vomits). They diagnosed her with an upper respiratory infection and croup. They gave her steroids.

It is now just before 4pm. She has been napping since noon. Very odd for her, especially lately. The drive home from Children's was mainly spent me listening to her wheeze. The wheeze comes and goes. She is using her stomach muscles to help her breath.

We will see what tomorrow brings! I have been saying for a couple of weeks that I could tell that things were starting to decline again. She is down to pooping twice a week, her urine output has been really low for a few weeks, her endurance has been lower (a two year old that will sit on the couch for severs hours at a time not doing anything), and she has been telling she has a boo-boo and pointing to her lower stomach. There has not been much we could do though, because until today she was not bad enough anyone would do anything. It is so hard to watch your child's body start to crash and not be able to do anything until the crash happens. Thankfully, croup is not as bad as many of the things she has had. She has had croup multiple times before. Still really hopeful that she does not end up with pneumonia.

While the treatment for the croup will not help any of the other things she has been struggling with right now, sometimes after multiple systems fall apart, she bounces back a little bit for a while and things level out again at her normal for a bit. I can be optimistic right? We will see...


Big thank you to Brent and my mom today! Thank you to Brent for taking care for Jillian this morning and doing a lot of the things that I normally do. Thank you to my mom for talking to me while I drove to the hospital. Sometimes the drive to Children's feels like forever when you have a sick kid.

The cauliflower incident

As Jillian gets older she gets more interested in food. She really watches us while we eat however she rarely touches food or tries to. 

Tonight I had been sitting on the couch eating some steamed cauliflower with season on it. I finished and went into the kitchen and was cleaning up. Brent was in the kitchen as well. Jillian was sitting on the couch and had taken my phone and was playing something on it (she likes watching old videos of herself).

 I went into the dinning room to mist the geckos (our one gecko has a broken jaw...) all of the sudden Jillian said "oh no" and when I walked over she was pointing at a small piece of cauliflower on the couch. I asked her if she had put it in her mouth. She said yea. With that she started to choke and vomit. I rushed her into the kitchen hitting her back ask she vomited on me and the floor. She just kept pointing to her mouth. 

Brent went and got a stomach drainage bag and we hooked it up to her g port. We have gotten a lot of clear drainage out. 

I don't think she put much in. They were tiny peices of cauliflower (had been frozen) and the piece she got had to been something I dropped and I did not realize I had dropped anything. 

She also still has the suck/swallow skills of an infant so she chokes when she attempts to put something in her mouth. She also vomited rater quickly so I assume that the cauliflower hit her throat and she instantly vomited it. Nothing has come out of her stomach so far that was not normal body fluids.

It still just makes us worry. We will keep a close eye for the next few days to make sure she did not aspirate on anything. 

So that was our excitement for the night. We were all really tired before that (it was 7:30 and Brent and I were just microwaving stuff from dinner because we were tired) but now we are wide awake and exhausted. Brent and I moved really fast in the moment... And then had to clean up the puddles. 

Oh the life of a tubie... She keeps it interesting! 

We are watching her ears right now too. She has been pulling at the one and telling us boo boo for the past two days. I looked into it earlier and it is so full of wax  I could not really see into it. Hopefully it is just a bunch of wax coming out. 

Miss sassy pants on Thursday being really cute. She was giving all of her little people a check up as she put them in the house. 

Brent had his work Christmas party this saturday. His boss asked him to go so we did. Brent started there a little over a month ago so he still does not know many people. I wanted to get a picture  of us dressed up but it did not happen. Here is our pretty pictures from that night:

The Cypro Cycle

For Jillian's GI motility issues she cycles between Cyproheptadine and Erythomycin. They both have their pluses and minuses and they both tend to work best when cycled on and off. They both were not created as drugs for GI problems, but are both used for the side effects of helping with GI problems.

Erythro is a pain because you have to give it 3 times a day. We do 6am, 2pm and 10pm. She gets no other meds at 2pm, and while it is not hard to draw up a med at 2pm, it is hard to remember sometimes when there are no other meds at that time. It also has a short life once mixed and we have to get it from a special pharmacy. Really though, Jillian likes the med because it has to be given by mouth. Its negatives are minor and we see how it helps her.

Cypro is med that you only give once a day and it can go in her J tube. It has a long shelf life. The trick with Cypro is that it is know to have different side effects each time it is cycled. I have talked with multiple other parents who have experienced this and we always have to a degree, however this cycle is definitely the hardest cycle so far... why? Cause my child is sleeping less then normal.

Since this cycle has started she is struggling to nap, get to sleep at night, and stay asleep once she is sleeping. Since starting this cycle she has only taken a couple of naps. We put her in bed at 8pm each night however she is not falling asleep until 10pm or later. She is getting up multiple times a night. The other night she fell asleep around 10:30 and by 12:30 I had been up with her 5 times! Sunday morning she was up before 4am hyper as could be. You can tell she is sleepy, but cant sleep.
 Add this to our normal sleep schedule and I quite frankly am amazed I am functioning. It just took me 2 hours of holding her to help calm her body enough that she could fall asleep.

I am counting down the days til we switch meds again. This little girl is sleepy... this momma is sleepy!

Everything is a season!

8th percentile

As a mommy of a kid with special needs things like hitting the 8th percentile in something is a cause for celebration.

Today has been a day filled with doing Jillian things. I don't mean spending time with Jillian doing fun things, but advocating for Jillian and her needs.

Friday afternoon Brent went to pick up Jillian's Advair (a medication for her lungs) and they told him that for Jillian's between the TWO insurances Jillian has (one from Brent's work and one for the state for kids with significant health needs) that the cost would be $400! Why? Because the state no longer covers in inhaler version of the MOST common asthma medication. That simple, the start of the new year they stopped covering it without telling families. You go to fill your script to find out they will not pay. The pharmacy told us they would send a script to the doctors office, however it was after office hours for the day. During the weekend Jillian ran out of her med. Out of the med the helps her lungs when it is below freezing during cold/flu season. It was a cross our fingers, hope for the best, dont expose to to many people weekend. The pharmacy told me to call the doctor first thing in the morning on Monday. I called today to see if they had samples of Advair that they could give us while the pharmacy worked on fighting for us. They told us they had over 100 faxes from pharmacies about kids not being able to fill their Advair! This is going to impact a lot of kids in our state! Advair has no generic here in the states. They said that they are needed to switch kids to Symbicort to give that drug a trial before they do the appeal for Advair. So they sent the script for Symbicort to the pharmacy. Then I get a message from the pharmacy that there is a problem with her insurance. I call them and her primary insurance is now saying we need to call them about getting Symbicort covered! I call the insurance company... they tell me they dont cover Symbicort! They would not tell me if they would cover Advair! I asked them what they expected me to do... she said the other insurance company should just cover the drugs they cover... well wouldn't it be nice if that was how it worked. I then called the pharmacy back. They said to let them see what they could do. After a little while they came back that they got the Symbicort covered. Yeah! They said that if after 2 weeks the new med was not working for her to let them know and they would help us to try to get Advair back. This whole thing just seams crazy to me! We finally had a med that was working ok (not great, but a lot better then the other meds she was been on) and now we have to change meds because of insurance. It is crap! They are both brand name drugs. They both cost about the same. This is ridiculous. Hopefully this new med works!

 Today is Monday so that means therapy day in our world. It has been 6mo since she started therapy and that means that she needed to be reevaluated again. We did her PT reevaluation today. She is currently at the 8th percentile for her age. That is up from the 4th percentile! Gain! I know the 8th percentile is still not good but it is something and we celebrate gains. She is better at walking then when she was first evaluated and now she can kick. She still can not throw, hop, jump, stand on one foot or walk on a piece of duct tape, or run. These are all things that she should be able to do at this age. Jillian also still has one side of her body that continues to we weaker then the other. We are going to continue with PT once a week. Her therapist asked if she has ever been evaluated for OT. I told her she had but at the time she did not qualify however the OT said that we would continue to watch it because she would not be surprised if as she got older she would qualify. Her PT said she would talk to the OT and bring up some of the current concerns and see if it would be worth retesting her now.

As I was dealing with the insurance issue today Jillian pooped. I was grateful for poop. Her GI system is in a mix of having a lot of issues again. She is randomly vomiting more and you can hear her refluxing more. She is pooping about twice a week right now which is not ok! When her poop does come out is is really thick which for someone who is on only liquid is not right either. Luckily we see GI again next month. Not sure though that there is a lot more that we can do right now. Since she is finally over 10kg we might be able to up her reflux meds. Because she has not really gained much weight in the last year plus she has not had a med increase so it might be time for that. We will see. I was excited for poop, but of course it came while I was fighting for her other med! Oh life!

Today has been exhausting! Today has been tiring. These are the things that are all a part of being a mom with a child with special needs. It is not just the the medical stuff but all the crazy stuff that goes with.
But I am choosing to end this day on a good note! As a type this I am listening to Jillian and Brent play trains. Jillian and I went to Target after therapy and just wondered. Yea I had some things that I needed to pick up but we just walked that isles, I think the mix of retail therapy (even though my most exciting purchase today was new Jake sheets for Jillian that were 75% off!) and walking did me some good. It also helped that I had such a cute shopping partner (the Starbucks probably helped too, thank goodness for Starbucks in Target). I made a yummy homemade dinner for us that Brent and I really enjoyed. Jillian and I played for a while together on the iPad and just cuddled and played her favorite games. Looking at the positives in the little things today!

That is just a look

My little fashion girl

She LOVES her Elsa hat

Our mini cold break

It has been a rather productive relaxing week here.

Monday: We had school and then Jillian had therapy. She only had PT because her speech person was sick. We then ran to the post office and Joann Fabrics. We came home, she took a nap, I got a couple of things done and we had Jaime and Jason over for dinner.

Tuesday: We had school, then we stopped at Walgreens. Then we came home, while she napped I called her state insurance company, set up our online account for our new insurance, and talked to the kind people who helped me reset my forgotten password for Jillian's collage fund. The three of us hung out at night.

Wednesday: We found out Tuesday night that there was no school on Wednesday meaning stay inside and keep warm day for us! It was a super productive day! Made several Tubie Friends, and worked on cleaning in Jillian's room. Jillian does not sleep in her room and it is mainly used to keep her clothes and stuff she is too big for. It had become a pile of pack'n'play, bouncer, infant toy mess. Things would just get thrown in there when she did not need them anymore so the room was a disaster! On top of that I needed to go through Jillian's clothes. She is in an odd size right now. Most 12mo pants are too short, but 18mo are WAY too big around the waist, and most are too long. Shirts are a little better then pants, but still in that gray zone between 12 and 18mo. She really has a 9mo waist and 15mo length... but they dont make that! So, we spent a good amount of time trying clothes on to figure out what fits. I pulled out a lot of clothes to pack away. Oh the joys of being an odd size! I feel like we are already experiencing the pains of finding clothes to fit a female and she is only 2! Thankfully I found a couple of pairs of pants that will get us through, with how tiny her waist is, she may still be wearing her 9/12mon clothes again for a 3rd summer. I know she does not look as tiny as her wait is, but that is her tube and belt making that illusion. Since we ordered her first g-tube belt when she was 6mo old she has lost 3inches around her waist. I know toddlers are suppose to grow in length and slim up but clothes shopping for this is interesting!
We played a new game on Wednesday and I would highly recommend it for any kid 18mo-4yr. It is called "Seek-a-Boo!" and it is a lot of fun! It kept Jillian engaged for over a half hour. I would also recommend it to speech teachers and it was a great game to work on Jillian's speech! I think we are going to bring it with us on Monday to speech. 

Thursday: Jillian had a 1:10 appointment at Children's. We left around 11:45 to make the 54mile trip. Between Moorland Road and the 894 on ramp there were 5 accidents! We got there at 1:00. The parking garage was packed but I amazingly got a super close spot. We were being seen in the allergy clinic. A couple of Jillian's doctors suggested that we go there to see if there are any environmental allergies playing a role in her lung issues. I have a lot of allergies and Brent has hay fever so allergies are not that out of the norm for us. We got there and they handed me a 4 page questionnaire. I REALLY prefer it when clinics mail these to me ahead of time. Jillian's medical history is long and they always want dates and obscure things and I am sure for most people these forms don't take long to fill out but for Jillian they take a while. Add to that trying to fill them out quickly while entertaining a 2 year old!
They took us back to do vitals. Jillian does not like having her pulse ox taken so she fussed for a minute and then was fine. She did a pretty good job with vitals. Part way through someone came over and they had a glow worm doll that they gave to Jillian. She was in love with it and called it baby. She was rocking it and pressing its tummy. It was so cute! They took us to a room and a nurse came in. She went over a bunch of pre-doctor questions with us. Then we waited. Because of the snow and bad roads a lot of people where getting there late meaning a lot of us arrived at the exact same time. We waited for an hour for the doctor to come in. I was SO grateful for Jillian's new toy then! I had toys packed with me but a new toy is extra cool so she played with it for most of the wait.
The doctor came in an we talked. He wanted to make sure that our visit there today did not have any connection with our visit with immunology and giving Jillian vaccines. Once I told him we were there to look to see if allergens were affecting her breathing it was like a weight came off of his shoulder. (I don't think I was a jerk to immunology, at least not enough that I should be know for it, and if we do look into her shot issue again, we will be doing it at a different hospital, I don't think that after our experience with that situation that we will go back to their immunology clinic) We talked about Jillian's reactions to dogs and what medications she is currently taking. She is already on Zyrtec and has been for a long time. She also takes advair. Pulmonlogy added a nose spray in December, but told us to use it when she has a runny nose. He wants us to start to use it daily. She actually really likes her nose spray so I am hopeful that goes smoothly. He looked her over. She always has dark circles under her eyes, he said they make it likely that she has some environmental allergies going on.
We then talked about options. He said we could either do the blood test or scratch test. We discussed the pros and cons for each and decided that for now we would do the blood test. We then headed down to the lab.
There was almost no one in the lab so it was quick to get in. I sat in the chair and held Jillian. As soon as the stuff all comes out for the blood draw she starts to whimper. Really for a 2 year old who has had the amount of blood tests that she has she does an amazing job. She sits still and does not try to touch the needle or what they are doing. I hug her but I don't have to restrain her. She cries a little but it is not an uncontrollable sob. She is amazing. The tech put an Elmo Band-aid on her and she told the tech "thank you." It was so sweet!  The tech was so proud of Jillian that she gave her a toy phone. I think sometime we are going to need to hold a toy drive for Children's so we can help other kids smile and feel loved just like Jillian did yesterday. Little things like that don't just make Jillian smile, they make my heart smile to see them loving my kid. It is so much more then the toy, it is a feeling of being cared for. Reasons like that are why we make it a point to give back to Children's and participate in the walk/run each year (yes I am already thinking about this year's walk run and what we are going to do)
We then headed for home. We were going to meet Dan for dinner but after our drive there I told the boys I was headed home after her appointment. There were less accidents but is was VERY windy and the blowing wind made it hard to see at times. It took over an hour and a half to get home. My dear sweet child decided that napping in the car was not for her that day and that yelling at her phone to get out of the box was more fun. She was not crying or upset, just yelling at it in jibberish.
Brent got home and we had some dinner. We all hung out. Jillian played in her new therapy room that we made in our laundry room (I will get to blogging about that soon). She had a lot of energy to use after our 5 1/2 hour trip to Children's and back in which she sat for 95% of those 5 1/2 hours. It is sooooo funny to watch her "jump" on her trampoline! She can't jump so she marches!
After she went to bed Brent and I  about Jilli future. It is not something we talk about much. We just live in the day to day. Her future has some unknowns to it. The conversation started because we were talking about how some stuff with how feeding tubes are made is being changed. It will be good in the long run just this next year is a transition time while everything changes over. I first heard about these changes a year ago... and while I knew Jillian most likely still have a tube when the changes took place there was a part of me that thought briefly that maybe these changes would not affect us.  I was asked to fill out a servery today for a special needs magazine today about parent feelings about feeding tubes. In the comments I wrote that at first I wanted to get rid of it quickly, however almost 2 years in I having a loving respect for her tube. It keeps her alive. I told Brent last night that it is not that I want her to be tube fed forever, but if that is what keeps her alive then I do want it to stay around as long as she needs it.

Today: We are taking today slowly! We worked in her room a little bit more, I did some more Tubie Friends and got all of my done ones ready to mail out once it warms up. I worked on some lesson planning (no just because teachers have had 3 unplanned days off this week does that mean that we really are not working, there is too much to do and get ready for next week to not work on stuff). Jillian has been watching Disney Sing along Songs videos. When redoing our DVD storage after Christmas we unJillian proofed her DVDs. This means she thinks she can bring us a movie any time she wants to watch it and thinks we should jump to put it in for her... this is a hard lesson for her! I have been telling her no most of this little break to watching movies because I wanted to get other stuff done and because I don't want her to sit and watch movies all day. Movies are great, trust me, as I cooked dinner for having people over on Monday putting a movie in was the only way that was happening but I don't want that to be the only thing she does. Right now she is in LOVE with the Disneyland Sing Along Song DVD. The bonus is that it was one of my favorites as a child so I don't mind watching it over and over, plus it is only 30min long. Today we branched out to some of the other Sing Along Songs DVDs. Sadly they did not turn a lot of them into DVDs, most of them are still only on VHS. We watched the Camping Fun and Beach Fun ones today. She loves to dance around when they are on. I even gave her the choice today between the Camping Fun Sing Along Songs and watching Frozen and she choose Camping Fun! I love how much she loves music!
Now she is taking a nap! It is the first time during this little cold weather break we are having that my sweet child is taking a nap. Not sure why but she decided that cold weather days are not for sleeping... not sure what is wrong with her lol!

So it has been a good little break for us! I got a lot done. These days off were a gift! Sometimes God sends a little snow and freezing weather as a gift. I am sure that a lot of people are not seeing our current weather situation as a gift but I am choosing to!


Sunday:

 Monday Morning:

I told her to put her hat on :)

 Wednesday:

She read books to Lamby

She was licking a mirror

Jillian playing with her Tubie Friend

Not sure why I got this look but I thought it was funny!

Coloring her picture of Doc! We colored for a really long time

 Friday:

She loves wearing her Sophia pajamas

Riding her "ike"

My little princess (the one problem with the dress is there is no great place for her tube to run but we make it work!)

She read to Lamby again

Giving her toys a check up

giving Lamby medicine

The ups and downs of a day

Up:

Jillian worked hard on her speech homework

Down: talking makes her reflux so much she was trying not to puke

Up:

She said "help" without prompting. We have been working on this for over a year!

Down: I worked on reteaching her how to "click" her tongue tonight. If you are close to Jillian you will know how much "clicking" meant to her. This is the third time we are reteaching her how to click. She looks so frustrated when we are having to reteach her something. It breaks my heart. 

Up: I got all my "big girl" phone calls done today. Sitting on the phone with insurance companies and such are not hard, but mentally draining. Jillian's collage fund company was kind to me when I called because I forgot my password. 

Down: Jillian's state insurance said I needed to call them, I did, they treated me like I was crazy when I called

Up: watching Jillian happily play with her friends

Down: a coworker and I just shaking pur heads as we watched her walk. It is just so uncoordinated. She walks from point a to b but really watch her legs sometimes and compare it to how other two year olds walk. 

Up: Jillian took a two hour nap today

Down: she sweat so much I have to change her sheets. 

Up: I got to cuddle with my little girl

Down: there is no down... You could say I got less house work done because I sat for an hour but time with Jillian is more important. 

Each day has it's ups and down, it's about how you look at it. Today was a good day. I got to hold my little girl, I got to teach my students, I got to be a mom and wife even when that includes doing grown up things. 

While my life might seam crazy sometimes, I really am happy. Realistic about our life, but still find joy. Life is good. God is good...all the time. 

This is a picture of Jillian of Saturday singing "let it go" into her pretend microphone. She shares the frozen love with most  of the country. She loves the songs (really she does not care about most of the rest of the movie) she has been singing "let it go" which is funny because the only word she can say in the song is "go" so she loudly, with lots of pride, sings the word "go." I love her love for music, determination, and that she is not afraid for the world her hear her sing. 

For the first time

Well the day has come... I always knew it would. My little darling figured out how to take her extension set off of her GJ tube. She watches us put it on and take it off each day so I am actually surprised that it took little miss imitate this long to figure it out.
Yesterday she did not nap and stayed up late, and she was getting grumpy today so I brought her upstairs and laid her down. Most days she falls asleep on our way home from work in the car and I just bring her upstairs while she is asleep. 
I came back downstairs and ate some lunch and I could hear her laughing. This was not a good sign. That typically means she is messing with her pump. I went up there and she was standing in her bed but did not look to be doing anything that would make her laugh. I laid her back down, tucked her in and then went to leave and stepped in a puddle of milk!
Thankfully when she took it off it fell off the side of her crib so the milk was running onto the floor and not her bed. Her button port was open though and it caused some milk to leak onto her shirt. I had Brent bring me towels and I worked on cleaning her up. Of course as this all is going on the guy from med supply came to deliver her supplies for the month.

Oh the life with a tubbie! You just have to laugh about stuff like this... now to figure out how to keep it from happening again!