Healing

Today has been a lot slower pace then yesterday.

Jilli woke up around 9:00pm last night and was not happy about the pain in her leg. We gave her some Tylonal and then she was happier. She did not fall back to sleep until 11:00pm (she had slept from 5-9pm) She then slept through the night... I however, my mommy instinct kicked in and I woke up every half-hour to hour to check on her, honestly I would not have it any other way, I would rather make sure she is safe. 
When she woke up this morning there was pee everywhere... she was on IVs most of the day yesterday and when they discharged her we hooked her back up to her feeding pump. She did not pee from the time she was in surgery until she went to bed last night, so that means all of yesterdays pee came out overnight... fun! I got her cleaned up and we started our day which has mainly consisted of hanging out in the living room.
My mom called me this morning and offered to run to Walgreens for me since Jillian's other med was ready. She was also super kind and brought me a sandwich and coffee from Starbucks which was supper appreciated. She hung out with us for most of the afternoon and played four different sit down games with Jilli and played princesses. We also watched a few of Jilli's favorite shows. Jilli mainly sat and held her leg in an odd bent position that must have been comfortable. She tried to take a couple of steps but it was really hard.
After my mom left Annette came over with a yummy homemade dinner for us. I am so thankful for her generosity!
Tonight we have just been hanging out. She wanted to sit on the floor and play little people for a bit. She would play for a few minutes and then lay on the floor for a while. She took a couple of steps and was rather wobbly and then went back to sitting. A minute ago she was laying on the floor and started to whine. I asked her what was wrong and she wanted to be picked up and moved to the couch, where she is now happily playing iPad.

I did get neuro called today and they said GI has to put in a formal referral before they will schedule an appointment for us so I contacted GI to get that. I got a dinner reservation for a restaurant that I have wanted to eat at for years at Disney but could not get into so I am really excited for that. It is a character meal with Mickey so Jilli is going to be well entertained while we eat.
We also started Jilli's new med schedule today. I am going to have to order more syringes!

I want to send a HUGE thank you out to everyone who has sent text messages, called or sent facebook massages. They have meant a lot to us and we REALLY appreciate them. THANK YOU!

Our plan is to have a low key weekend and hope for more healing for Jilli's leg. 

cuddling with daddy after work

playing her princess game with grandma (yes that mark on her leg is where the muscle biopsy was, its about 1/3 the length of her thigh)

Her new morning med routine. She does meds 3 times a day, but morning by far is the most

EGD, throat motility testing, swallow study, and muscle biopsy

I think I have run around Disney from 7am til midnight before and not felt this exhausted.

I am going to try to do this post in chronological order of how the day went, and I will do my best to include everything... but be prepared for a long post (any maybe not the best spelling and grammar)

Last night Jaime and Jason came over (Jilli was so excited they were coming over she cleaned up her toys in the living room by herself) and after they left Jilli got a bath and was wiped down afterwards with the fun pre-surgery  wipes. She was very confused why we were not wiping her butt with the wipe. She asked for cuddles in mommy and daddy's bed and we caved. We gave in a little more and we all laid their and watched the Magic Kingdom DVD!
We woke up this morning and got moving a little slower then I would have liked but we made it out the door in enough time to run though a drive through and get coffee. I live on coffee on long medical days.
We got up to the hospital and were happy to find the parking garage had less construction walls and we were able to get a good spot. We checked in and headed to surgery. Once we checked in on the 4th floor they took us right back to a room and started vitals and all of that. Jilli did not like that her oxygen line was plugged into the wall and not her tank. She gets really possessive about her medical equipment and sometimes it leaves us scratching our heads. We waited in that room for a long time and then all of the sudden stuff started moving and the room went from just the three of us to a flow of people in and out. They gave Jilli "happy juice" and when you give that in a j tube it does not take long to start working. She quickly found everything funny and then she started spacing out. The surgeon came in and marked her leg. The GI doctor came in and we talked. The anesthesiologist came in and we talked to her. I really appreciate the precautions they take with her. They decided that since we were there testing for mito that they were going to act like she had mito and use those precautions while she was under anesthesia. I would rather they be cautions.
It got a little crazy there for a little while because they wanted to drain her g but we only had a j extension set and they only had a j extension on the floor. They did not realize that AMT G-Jet has different g and j extensions and that they are not interchangeable. I knew there was one in the car so Brent headed to the car. After he left they talked about just putting a catheter in the whole while in surgery to let it drain and then putting her tube back in. Then as they wheeled her into surgery a guy from distribution brought up a handful of extension sets and they did have one in there (note to world g= white tip, j=green or tan tip) so they were able to use that. Brent then met me in the waiting room. She was back in surgery for almost 2 hours. They did the muscle biopsy first and then the EDG and placed the motility catheter down her nose. They told us to go into one of the consult rooms to wait for the doctor to come talk to us however the doctor came and got me because Jilli woke up as she was being wheeled out of the OR and she wanted mommy (I just left Brent sitting there with all our stuff.. ops!) I got back there and she was quite sad. They ended up giving her a dose of pain meds for her leg. During surgery they had given her a local pain med for it but you could tell it was not enough. Once she got more pain meds in she closed her eyes and rested peacefully.
Dan's cousin's wife works there and came in to say hi to us. Then our GI nurse came in to see how it is going. Then the GI dr came in and we talked for a little bit.
Jilli has a hernia again/still (on her first EGD they found a hernia but no one mentioned seeing one on her second EGD, this is her third EGD). Her sphincters coming in and out of her stomach are more open then they should be (they are too relaxed). They are also irritated and just not happy looking.
The doctor suggested that it was time that we needed to seriously consider a fundo (punch to my heart). Searching this blog will show you all the reasons why we have wanted to avoid a fundo as much as possible, but basically its a big surgery, that could either help or hinder her no guarantee. We have been trying our best for the past two years to avoid a fundo, so it was kinda a hard hit when they told us it is time we really need to think about it. They said their recommendation would to be a loose wrapped fundo and that we could make an appointment to talk to the surgeon who did her muscle biopsy today his thoughts on the fundo since a surgeon has to do it. He and the GI doctor talked about it a little while they were in the OR. I guess Jillian's other GI doctor (the one that Jilli started with) was also in the OR today and so Jilli's new GI and old GI were able to look at a few things together and talk. These are probably two of the doctors who know Jillian best and have seen her the most often, and above all, care about Jilli a lot. I trust the two of them more then I trust a lot of the other doctors we see, not that her other doctors are bad or that I don't trust them, we have just spent a lot of time with her GI doctors and built a relationship with them.
We talked a little about the genetic testing and the genetics department being short staffed right now. She recommended that Jilli is seen in neurology again. She was seen in neuro when she was 7mo old and there was though that she might have been having absent seizures (the events were caused by reflux) and we have not seen them since. We all decided it was a good time to go back to neuro and have them weigh in. Part of that as well is that we are going to try a new med with Jilli to try to tighten up the sphincters, which is normally prescribed by neuro doctors for muscles and we are trying it for GI muscles. However until she has it we do not know how it will effect the rest of her muscles so we are going to have to watch that.
We are also adding a second reflux med to the mix (we are keeping her current one too). By the looks of the inside of her stomach and throat, she needs it. We are also going to give her reflux meds in the j tube. We have always been told it had to go in the g (or mouth) however her new GI is saying that in people with slow gastric emptying that giving it in the g can make the medication not work as well because it sits in the stomach too long. Hopefully changing location of her med will help her too.
We also talked about her gastric emptying scan she had done a long time ago. It was done putting liquid into her g and watching how long it took to empty from her stomach. It showed it went out of her stomach way too fast and that result has always left us scratching our heads because clinically she is the opposite, she can puke something she ate 15 hours before. We figured out today that her tube is located close to the bottom of her stomach and it would make total sense if they put something in her g tube for it to flow right into the intestines because of the location of her g tube. We all agreed that those test results were probably invalid and we can all stop scratching our heads about that. (yeah for an answered question)
We talked about her CoQ10 and the fact that to get the 300mg a day that they wanted it would take 30ml of liquid to get that and she has volume issues. She said to get in what we can in a day. We talked about the mito cocktail of supplements (CoQ10 is one of them) and decided that is something we want neuro to weigh in on as well.
It was then time to head downstairs. Our surgery nurse brought us to one area and we were suppose to be in another. He did not know where the other area was, however I new how it get there (is it sad that I know how to get to parts of the hospital the staff don't?) In the area we didn't need to go where nurses we knew too, so we said hi to them. We just ran into people we knew all over the place. There are people all over there that care so much about Jilli and it shows when we walk through the halls. I don't want tons of people at a children's hospital to know my kid by name, but since we do spend so much time there is means a lot that they have spent the time to get to know her and us.
We got downstairs and everyone suited up in lead. Her leg bled a little moving her from the table to my lap but it was fine. The room was full of people to help with the throat motility testing and swallow study. First she swallowed some water while sitting on my lap and they watch that on the motility testing. She did good swallows. Her lower esophigial sphincter showed on there that it was more lax then it should have been as well. Then we put her in the chair and she swallowed barium water and they watched it both with a live x-ray and the sensors down her throat. She did alright with that. Then they did pear baby food with barium. That she had a harder time getting it to go down her throat and once it went down it immediately started trying to come back up. You could tell she was working hard to keep it down. We gave her some more water and she was able to clear it out of the back of her mouth and down.
We decided that since we are taking her mouth med away from going in her mouth (her favorite thing!) and since that is good small volume practice we are going to try to do 2ml at that time of water or a flavored water to still work on swallowing. That really does not increase what she is getting now (actually smaller) and will help her to keep the skills she does have. With it not being a med, we can also drain it out of her stomach if she is really struggling refluxing it.
Then Brent and the GI nurse took Jilli over to IR because during surgery they accidentally knocked the J part of her tube out of place. The GI doctor and the speech path and I talked about what we had seen and that it showed even more that we needed to think about a fundo. The fundo probably would not make it so she could take her food orally, she still has other issues in the way of that but it would help to protect her esophagus and there is a chance she could have some baby food in her stomach in small amounts, but that is an if it works, and a lot of other ifs. The goal of that would be protecting her body parts from herself not a push to get her off of her tube. We have always said her tube is here as long as she needs it, and for now it is without a question the safest way for her to the nutrition her body needs. We are also going to wait to see how the muscle biopsy comes back and how the stomach/throat biopsies come back before we make any decisions about the fundo. If we do a fundo it wont be next week, it is something that we need to figure out, ask more questions, do more research and meet with more people before we agree to it, but it is looking more likely then it has in the past. 
The GI doctor and I then headed over to IR where Jilli was getting a new tube. We talked to the people over there that we knew as well. The GI nurse, the GI doctor and I talked a little more. Then we headed back up to day surgery.
In day surgery they checked all of her vitals and give us all the discharge instructions (sorry kid, no swimming for a week... she has been begging to go to a pool) and they took her IV out and we were able to leave.
By this point it was 3:30 and we have not eaten anything since our coffee a little after 7am so we met Dan at Cheesecake Factory. She played her iPad nicely and rested her head on Uncle Dan's hand most of dinner. If she was not resting her head on him she was holding his hand. Once we were done with our meal I was done and just wanted to come home. We stopped at Walgreens on the way home to pick up her two new meds and one of them the insurance company is wanting more info from the doctor before they will pay for it so we could not pick it up today but we did get her second reflux med. Jilli feel asleep in the car coming home and has been sleeping on the couch since. She did not get a lot of sleep time after surgery, we needed her up enough to swallow, so she was absolutely exhausted by the time we headed home (she kept trying to fall asleep at weird times in the hospital today).

I am thankful that she handled surgery well. I am assuming everything for the muscle biopsy went well since I realized once we got home that we never did talk to the surgeon about it after the surgery, but she does have an incision on the top of her left leg that is rather bloody (dry blood at this point). She kept poking at it earlier. They did a local pain med and a shot of pain meds so she is not feeling it now, but I have a feeling that tomorrow that is really going to hurt. I am hoping we can ride it out with over the counter pain meds (this child already takes a pharmacy) but they did give her a script for heavier pain meds if she needs it.We should hopefully have results from the muscle biopsy in 6-8 weeks.I am SO hopeful for results from that.

So thats our day. Kinda crazy. Kinda long. But we did get some answers today and we are hopeful that the muscle biopsy will give us more. For now I think it is sleep time for this mommy... time for some hot chocolate and Gilmore Girls.

waiting in pre-op

happy juice started kicking in

playing iPad

Thank you all for the prayers, thoughts and well wishes today. They mean a lot to us! 

An emotional roller coaster... the big gentics test results

Today I had the phone conversation we have all been waiting for... I talked to genetics

I have left messages and sent online messages for our genetic counselor multiple times over the past couple weeks and had not heard anything. Today I called the main office line and she happened to be at her desk so they transferred me over.
She told me that she had not seen the report yet but she would check in the computer system to see the progress. When she opened it up she learned that Jillian's test was complete and had results...

They found no know gene changes that would be causing Jillian's stuff. My heart sank. No, I don't want my kid to have some genetic disorder but I have a child on oxygen and a feeding tube... somethings not right. We talked about how there are so many things about genes that they still don't know and while yes she has a disorder, science has not caught up to her yet, this making it so they can't pinpoint where the problem in her genes is located.

I then brought up that we talked last that if this test did not show anything then the next step would be a muscle biopsy. I asked if that was still the plan. She said she did not know and she would have to talk to the doctors but to her that is the logical next step. I mentioned that Jillian is already going in for surgery next week for some GI testing and that it would be really nice that if we are going to do a muscle biopsy that we could do it next week while she is already sedated. This child is only 2 1/2 and has already been sedated 6 times so I would like to limit sedation as much as possible, so if we could combine these two things that would be great.

The genetic counselor said that she would talk to the doctors and see what she could do. She agreed that the best timing to do a muscle biopsy would be during her other tests next week and she would see if she could make it happen. I got a phone call from her a little while later saying that the genetics doctors agreed that a muscle biopsy was the next step and that they agreed that it should be done next week. They sent a message to Jillian's GI doctor asking if they could add this in next Thursday and they are waiting to hear back. If GI agrees then they need to find a surgeon who is able to do it. These are a lot of pieces that need to fall into place in a short amount of time, but we are praying they will all fall together.

While we were on the phone she also mentioned that Jillian's case might be the prime case for research. Between having the muscle biopsy and having all the genetic information that they have on Jilli, she might help them figure out some things with genes that they did not know before that might help Jilli and other kids. In doing a clinic gene test they can only report on things that they know for sure what a gene does however in research they can look at leads and different things. That is definitely something for us to consider.

Today I am trying to remind myself  that they only gave us a 30% chance of finding anything with the gene test, but we were hopeful. We want a definitive name for what "this" is so we can best help Jilli.

Prayers that everything falls together for this muscle biopsy to fall into place. Also prayers that it gives us answers.

Today I'm choosing to put this emotional energy into making some Tubie Friends to give to other people going through a situation like us. Jilli and I are going to play her new Bear in the Big Blue House game (we went to an odd little store yesterday that had a Bear in the Big Blue House game, and Jilli LOVES that show however finding anything Bear was a BIG deal cause they don't make anything with Bear anymore).

Just reminding myself that today is just a step in the journey...

Trying to figure out Jillian's genetic picture

Pulmonology

Today we had our appointment with pulmonology. I had butterflies in my tummy this monring before the appointment. Here is the break down:
-Jilli's pulse ox numbers did not look great at the start of the appointment because she walked onto the scale and then over to be measured without oxygen on. Even in that brief interaction her lungs showed her what they do when she walks.
-Jillian's CT actually looked better then the dr thought it would. There is some scarring and there are some inflamed airways but it is better then she was guessing it would be knowing Jillian. The "collapsed" portions are probably from her not taking deep breaths when she lays down. She showed me the video of the CT.
-We all agreed that Jilli needs to stay on oxygen. It is helping her so much. She said the tests that they have done don't necessarily show a huge data need for it however how much better she is going on it most definitely show she needs it and we are just not able to do the right kind of test for what is causing her to need the oxygen because there is not a developed test for that. She says this points to it being a cellular level needing the oxygen (which points more to the thought of a muscle disorder)
-She asked about genetics. We talked about how Jilli's genetics dr is gone and how I have not heard back from anyone in genetics. Prayers for genetics to communicate with me would be great. I keep reminding myself that God has the timing on this and there is a reason, just in the midst it feels crazy.
-We talked about what we needed to do so Jilli can have oxygen at Disney.
-We came up with a plan for next June, since Jillian always get croup in June. I am glad we have a pro-active plan.
-We are going to try to only do her one med once a day until fall and then bump it back up as the weather gets colder and into the time when she typically struggles more. We try to balance and only give her as much as she needs at any given time. All medications have side effects so we try to gauge how much she needs to best help her little body.
-She agreed that its good to keep Jilli out and socializing now while the weather is nice but that its a good plan to keep her home more when the weather gets yuckier and when there is more illness. She is hopeful along with us that maybe with her not in daycare this year that she will get less germs and that will help her lungs.
-We asked her what we should do to best help Jilli though this winter and she said to do nebs as soon as we notice anything (which we do) but that other then that there is not a lot we can do. Her lungs are in this grey zone, where she is not quite bad enough where insurance will pay for the vest system to help her get the gunk out. The hope is that as she gets older what we can teach her techniques to help get the junk out of her lungs.

Overall I felt really good about the appointment and I felt like we had a really good discussion. We ran into our new GI dr on the way in and talked with her for a couple of seconds (we were running a little late, parking REALLY sucks there right now)
This afternoon we put together her tricycle that she got for Christmas. It came in a lot of parts so my mom and I worked together and then we went to Target to get her a helmet for her bike. It has princess on it so she loves it (her head had always been a little on the big side... she may still wear 12mo clothes but needs a 3-5yr old bike helmet cause the younger kids one was too small) She loved riding her bike and I loved that the parent handle controls which way it turns and that she can rest her feet on the pedals and I can push it until she learns how. I also liked that her oxygen and feeding pump fit on her tricycle.

Madison Children's Museam

Week two of summer fun outings! This week we went to the Madison Children's Museum. I had been there once before a few years ago and Jilli and my mom had never been there. It was a fun adventure and Jilli played hard! She was saying tonight that her legs hurt from all the walking she did today. When she was done she also told us "go home. nigh-nigh time." I don't ever recall this child telling me it was time to go home and go to bed, especially the child who has thought sleeping the last two nights is a highly over-rated event and has been up for good portions of the night. It was a fun day!
Tomorrow is her pulmonology appointment. The first one since she was put on oxygen and after her CT scan. I'm a littler nervous but praying that it all comes together and we are able to have a good conversation about how to best help Jillian.

balancing

reading books

good work on walking on non flat surfaces. She is really working on that

she LOVED the water area

row row row your boat

the watering can was almost as big as her :)

Playing with water outside

I spy....

puppet show time!

Jilli made an art project

she worked really hard to make sure it was just right

The magna tiles were very interesting to her

this picture is for her GG and Aunt Jaime

Hamster Jilli

Jilli driving a space ship! Watch out space...

Jilli made a friend. They made a "house" together with the help of the little girl's grandma. Both girls were really proud of their hard work!

Jilli loves to smell the flowers

that pond was just so tempting to a two year old

we told her the people in the picture were carrying fruit on their head so she did too

Jilli with her oxygen and feeding pump in her wagon, it really helps make her more independent and she really values that

Oh sleep

My butt is ddddrrrraaaggggiiinnnggg today! Last night I stayed up to make our fast pass plus reservations. Was able to get everything we wanted except meeting Anna and Elsa. I put Jilli in her bed a little after 9pm. I went up right before 11 to put PJs on to be comfy for the scheduling fun she was still up. When I went up to bed around midnight she was finally asleep however that would not last long as she was up from 2am-4:30am.... why you ask... I would love to know. Then up a little before 9 this morning. She is kinda crabby (and doing things she knows she should not) and I am sleepy. I have accomplished making two tubie friends today and that is about all between her trying to eat colored pencils and wanting to be right next to me. Good thing the couple of people who are coming over tonight love me for me and wont care too much that the house looks like a tornado ran though the living room dropping Little People all over the place. Does it make me a bad mom to just want to curl up on the couch and watch Disney movies the rest of the day? 

What a week!

Well that was quite the week. Before I go into the deals about what made it sooo long I want to make sure to put some of the fun stuff we did because we did have fun this week too. Jilli, my mom and I went to a Children's museum. Jilli and I stopped at the zoo for a little bit and we got dinner with Dan and Brent in Milwaukee and on Friday my mom, Jilli and I went shopping in downtown Lake Geneva. All of those things were a good time!
So what made the week long...

Tires:
On Tuesday night Brent was on the way home and his tire blew on Hwy 12. I had to go bring him tools because he did not have the right size tool to get his tire off. Wednesday morning mom and I brought his car in to get the tire fixed. Last night we were coming home from Kenosha and we stopped at Walgreens in Lake Geneva to get one of Jillian's meds. Something was making the sound like a playing card in a bike tire slowly going around. Brent went and looked at the tires and said everything looked fine and he could not find what was making that sound so we headed down hwy 12 and got a mile from our exit and the rear passenger tire blew! This is when we figured out why the tools in Brent's car were the wrong size... he had my tools in his car and I had his so once again we were on the side of the road and not able to get the tire off. We called my cousin Jake and he came with tools and helped change the tire. Jake's hobby is cars and he looked at the tire and said that the way the tire blew looked like it was not balanced property. Now mind you this tire is less then a year old and I have had them rotated since getting them at the place that put the tires on. I believe Brent and I also both had the same brand of tires, which were not the cheapest tires either.  When we finally got home (mind you we had gone grocery shopping in Kenosha before we left...) we switched the tools back to the correct car.

ENT:
Jilli had an ENT appointment Thursday afternoon (my mom was kind and came and did oxygen delivery here while we went to the appointment). The dr looked in her ears and her ear tubes were out and in ear wax (she has SUPER waxy ears). We were hoping they would stay in longer since they were just put in last September and should last a year to 18mo. Jilli did an AMAZING job while they dug them out of her ears and cleaned out wax. Im not sure how that much wax fits in her ears! Then we went over the the audiologist. Last time we were there the audiologist and I disagreed and I was hopeful this time would be better. We did the test and Jilli did not react to the low tones (like all the other hearing tests she has failed... she does not hear guys with really deep voices and she did not hear the low toned fireworks... we were close to them and she did not even jump when they started, we also have two fire works places near our house that were lighting off fire works nightly before the 4th and Brent and I were jumping and Jilli never reacted) well the audiologist said that Jilli was just board for the low tone part of the test so she dismissed the results. She did another test with whispering in a normal voice and she said that Jillian's hearing was fine because she can hear whispers. Volume and tone are two very different things. I know she hears whispers, I also know she does not hear low tones correctly. Now they are talking about having 2 audiologists work together on a test so Jilli does not get "bored" but I'm waiting to hear more about that. ENT dismissed her unless audiology can figure something out. I left really annoyed!

CT scan:
I got a call on Tuesday from the pulmonology nurse and she said Jillian's CT scan came back "relatively normal without excessive scaring" The way she said it I could tell there was more to it. I got off the phone really confused until the official report showed up a few days later. After Google searching some of the terms I had some questions and sent it to Dan's mom who is a nurse. She confirmed what I thought the report said... there are small parts of the top and bottom of her left lung and bottom of her right lung that are collapsed. Based on the report it only says small parts so we don't know for sure how much "small" is. There are a couple things that could be causing that 1) aspiration pneumonias 2) the muscles in her lungs are not working properly. Both of those are real possibilities with Jilli. We see pulmonology on Thursday so I am hoping to find out more then. This is also Jilli's first CT scan of her lungs so we don't know if it looks better or worse then before. This hit my heart hard. I did send a message this weekend to genetics to see who our new doctor is going to be and looking to set up an appointment. Results from her big test should be back between August and September and I don't want to have to wait forever to get an appointment to get results because they are down a few doctors so the ones that are there are really busy. We need to figure this out, but if you want this mom's gut instinct... its a muscle disorder. All the tests we are doing and her symptoms  are pointing to that more and more. If genetics can't help us I am going to have to go looking for someone who can figure out something.

So thats been our week. Normally I just keep rolling with things and life just goes on. I have to admit though last week hit me, but like everything else we will keep rolling. My car is at my parent's right now and my mom is going to take it for a new tire (hopeful it is fully under warranty cause buying two new tires this week, even at prorated warranty rates was not exactly in the budget plan). Hopefully genetics will get back to me with a plan. Next weekend is my Birthday and we are planning some family time! Tonight I get to make our Fastpasses for Disney which is supper exciting (yes I have spread sheets and plans for our trip, lol) I have been working on stuff for Team Jilli this week too. We also have a couple fun things planned this week, so here is to a new week! 

Children's museum trip

My mom works in the schools so she has time off in the summer and I am now a stay at home mommy so we made it our goal to visit some new places this summer and have a few fun days. We have a lot of medical appointments this month so we are trying to balance that with some fun!
A couple of months ago I bought a Living Social deal for the Kohl Children's Museum so we decided on this cold day in July it would be a good day to spend inside playing.
First I had to take Brent's car to Sam's Club because his tire blew yesterday on the way home (check out Brent's Facebook for the picture) so we needed to get a new tire and his tire was still under warranty. They insinuated that we did something to the tire to cause it. I don't even know what I would do to cause the tire to blow like that, and trust me we all had better things to do last night then deal with Brent on the side of the road from a tire and me having to drive it to Kenosha on the spare tire this morning. They would only give us 1/2 off a new tire because they felt the other tire was 1/2 used. After we got that taken care of we headed to the museum.

Here are our pictures:

Jilli "tube fed" her baby

She read a felt story with grandma

She "tube fed" the doggy in the vet office

she loved painting

you cant tell in this picture but she got paint all over herself making this... even behind her ears

she got to "drive" a train

what will hover?

building city people

she really loved this table and pegs

She got a map outside and she used it to show us where she wanted to go. She really likes reading the map

she really liked this spinney thing

she really wanted to climb this so we all worked together to make it happen

she insisted that mommy had to get in the plane with her

there was a little maze. It was interesting in the umbrella stroller

Uncle Jason... its your room!

she used one mallet to play and sang in the other one

this was really cool!

Jilli decided she needed a rest so she walked over to the nursing station and laid down

She missed PT this week because of her CT scan so we did a little at the museum

She got to drive a boat!

She worked on "bricking" a house

She wanted to go back to the baby doctor area