While I love being around people there are some questions in our social society that are just complex. The biggest one of those is the question "How's it going/how are you?" In most social circles the only truly acceptable answers are short, one word, and normally "good, ok, or fine." While the response to our awkward greeting question has always been more of a habit answer, I am struggling with this habit.
See since having Jillian many people have asked us "how is she" or "hows it going?" Jillian makes this question complicated.
See for Jillian fine, good and ok mean something a little bit different. Her good for the day might mean that we have only had to do a neb every 4 hours instead of six. Her fine might be that her med port popped open and "burned" her skin. Her ok might mean that we are celebrating not having to spend time with any doctors that week.
I am torn when people ask me this question...
1. Do they want the real answer of how everything is going including info from doctors and therapies and sickness? Are they looking for the details? Sometimes I find the details of our lives to be a little overwhelming. I have told people the story of the past 18months sometimes and they look at me like I just ran them over. They don't know how to respond and I don't like to make people feel that way.
2. There are other times were emotionally I just can't get into it. When I have been up all night watching my child breath, sometimes I just don't want to give an answer. Sometimes I just want to shrug my shoulders and hand someone a business card with the url to my blog. (which I have never done... but thought about)
3. Sometimes people really just want the generic answer and thats ok I guess. Sometimes I ask people that question and I am doing nothing more then fulfilling a social obligation and I should fully expect that others do the same.
4. Sometimes I tell Jillian's story or how her week/day/hour is really going and I get the line back "well she looks fine to me." Aside from someone telling me I am a crap parent, that line is one of the most hurtful things I have been told by people who truly (most of the time) are not trying to hurt me. It feels like everything we do is unvalidated in that statement. I know I should take it sometimes as a compliment; that we are working hard enough so the outside world does not see her struggle. That we make her look "normal" enough that she fits it. Maybe someday I can see that phrase that way, but I'm not at that point yet. Jillian gets sick fast sometimes. You might have seen her the day before and she might have been fine and by the next day we are in the hospital. This has happened before. Just because she might look "fine" to someone who does not know her well does not mean that it has not taken multiple pharmaceuticals for her to be able to function that day. We work hard to give Jillian as normal of a childhood as possible and for us this is our normal, but somedays the fine is a big illusion. Jillian is typically happy, even when she is sick and many people mistake happiness for health.
But out of all of that the thing that I probably struggle with the most is that I have yet to figure out a way to share our story and show all the JOY that we have in our lives. Many people hear our story and feel bad for us. Pity is not something anyone wants. Even through all of this I have so much JOY! Even though some nights are hard and some days are daunting, I still have joy. I'd be lying if I did not admit to the tears shed in this journey (we do have a little girl that they are looking into what rare genetic disorder she has and any many of them don't paint a pretty picture)... but I still have joy.
If all people do is hear our story and feel sorry for us they missed the story. They missed the joy. While no one goes into parenting hoping for it to be full of hospitals and doctors, we have chosen to find the joy in all of this. (sometimes I am afraid that this will go the other way and people will mistake our finding joy in what life brings as us wanting all of this to happen to our little girl and that is absolutely not true either). We could either chose to love our little girl despite all of this and find joy in our everyday life, or we could wallow and live life angry. That would get us no where.
We choose to find joy from the ONE who gives joy. Without walking with Him through this I think that this would be a very different story. We will keep looking to Him and He will keep filling us with a joy that is not of this world. A joy that cannot be explained any other way then by saying that it is from Him.
So if you ask us how we are, expect that it might be a long answer or a short answer. Know that if it is not very detailed that my shortness might have nothing to do with you. And if we choose to really share what life is like that moment, be willing to listen with open ears and look for the joy in our story, even if our heart is heavy that day.
Monday, May 26, 2014
Wednesday, May 21, 2014
GI, Ikea, sweat, swallow, and B to 3
Friday we went to see GI. We walked in and checked in. We sat over by the fish tank and as I said "Jilli look at the fish" she vomited everywhere. Yeah, I'm not prepared like I once was with spewing vomit. I had a ton of extra clothes for her so I just used some spare pants to clean it up. We then took her back to weigh her and such. Before we left the house in the morning I put a urine collection bag on Jillian because we were trying to get pee for genetics. While in the waiting room Jillian peed out the bag so I took it off of her so we could get an accurate weight. Her weight is still right around the same and so is her height. We then went into the room. I stared to put a new urine bag on her as her awesome nurse walked in the room. Lisa jumped right in and helped me put it on. Lisa and I talked for a little bit and then the nutritionist came in. We are switching Jillian to Elecare Jr, but we are still going to mix it to 20cal. We are also going to be upping her 1ml/per hr each week until she is up to 61ml an hour (she is currently at 55ml per hour so it is going to take 6 weeks to get to our new rate). While the dietitian was in our old dietitian Carly came in. Carly and Jilli have a special relationship. Carly played a large part in Jillian moving from a NG to a NJ tube. While Carly is no longer our dietitian, she still sneaks in sometimes to see Jillian. Jillian was all excited to see her! The doctor then came in. We talked for a little bit and she said she wants Jillian to have another swallow study done. Other then that the appointment was not too eventful. Jillian did end up peeing in the bag while she was there so we were able to bring her pee to the lab.
Ikea:
After we left GI we went on a hunt for a post office to mail some Tubie Friends. After 4 posts offices we were finally able to get them mailed! Jillian and I then headed down to Ikea where Brent met us. Brent had been taking a class in that area all week and had spent Thursday night at a hotel down there. We were going to Ikea to pick up a couch for my little brother because he is about to leave for grad school. While we were there we got Jilli a cheep little train set to go on the train table. We also found a major deal for us! We were upstairs looking at kitchen table and chairs because our table is a small pub table and does not fit very many people around it. We have weekly dinners with friends and it can get rather cramped around our tiny table. We have been dreaming of a new table but there was really nothing in the price range that we had to spend that was worth buying. We got downstairs to the as-is section and there was sitting, the table we were just dreaming of for less then we had saved up. We were so excited. It has a couple of tiny scratches but they just make it look loved. We then played fit the already assembled table in the car game. I LOVE the new table... and the best part... we have been eating dinner at it every night. We normally would only eat at our old table when people were over but now we have been sitting down and eating together and talking and praying together (our odd little family of 4). There is now room for us all to sit comfortably at the table. That to me makes the new table worth a whole lot!
After we left Ikea we went over to Chevy's and met my cousin Jess and Ryan for dinner. Jilli was such a good girl and the big people enjoyed hanging out and talking. After dinner we went over to the mall. Jillian loved seeing all of the Crocs at the Crocs store. She wants a pair of Crocs to wear so badly but they are too big for her feet. When she sees Crocs she takes her shoes off and wants to put them on. We also went over to the Disney Store. She was spoiled by Jess and Ryan and they got her three princesses that are just her size and a Doc McStuffins phone. Strangely though her favorite thing to hold on to at the mall was Jessica's Arie bag. As the mall was closing we tried to go to Cheesecake Factory for dessert however it was getting late and they still had a long wait so we went over to the Toll House Cookie store and got dessert! We then all headed home.
Saturday:
Saturday we cleaned the house and worked on house projects. They boys cut the lawn. Jillian played and hung out. I carried her around for a little while in the Moby Wrap. I still LOVE that thing. I dont use it much anymore because she is so independent but there are times that it is just so handy!
Sunday:
Sunday morning we work up to a mess. A med port popped open on the j tube sometime during the night mess. It stunk and made a HUGE mess but the worst part was that when all of the tummy juices leak out they "burn" her skin. It looked and felt like a really bad sunburn! It was all down the back of her legs and on her butt. I felt so bad for her.
We went to Church and after Church we went to a graduation party for a family friend from Boy Scouts (Brent and my brother are Eagle Scouts). It was fun to see several people that I had not seen in a few years. My in-laws were there also so Jillian got to see her grandparents. We then headed back to the house and worked on a few more projects.
Sweat:
Monday morning Jillian and I got up early and headed to Children's. She had a sweat test. For the sweat test they put a solution on her arms and then put electrodes on her arms. They then turn the electrodes on for 5 minutes. Jillian did not love that part. Then they put pads on her arms and tape them down to collect sweat. Then I put a sweater and jacket on Jilli. We were then given a piece of paper that told us to come back in a half an hour. Jillian was rather attached to the piece of paper. It was cute. We walked down an got on of the Egg bake from Cafe West (YUMMY!) and coffee. We went back a half hour later and Jilli gave the lady back the paper. They took us back in a room and we took Jillian's extra layers off. Jillian kept pointing to the stuff on her arms like "do you all know this is here?!?!?" They took all of it off and once they checked to make sure they had enough sweat we were told we could go. Jillian was such a big girl! After we got done I told her we would go to Build-A-Bear. We had a promo gift card from when we got her monkey to spend. (gotta love free stuff!) We went and she picked out the surgeon's outfit for her monkey. She held onto it with such pride as we went to the check out. She handed the guy the outfit and he put it in a bag. Then he went to hand me the receipt but she grabbed it and put it in the bag like I normally do. It was cute.
I got an email Tuesday saying the sweat test was negative meaning she does not have CF!
Birth to 3:
Birth to 3 came over in the afternoon to do her reassessment. Her service coordinator, speech and PT came out. In both speech and PT she is functioning at a 12 month level (she is just over 17mo). We decided to start having both speech and PT work with her. She is such a smart little girl and wants to walk and talk so badly. One of the suggestions to help her to learn to walk was to get her flimsy walking toys. She has great sturdy walkers however they wanted something that would fall if she put too much wight on it. Tuesday after work Jillian and I went to Target and she got to pick out a flimsy walking toy (I have to admit it was hard to spend $20 on a flimsy toy!). We found a little doll umbrella stroller that came with a little doll. She is in love with the doll. The stroller is hard for her to push because it tips so much. With time she will get better at it.
Nebs:
Jillian has been doing nebs daily since our trip to the water park. It is hard to see her struggle so much with just getting a little water in her mouth. Thankfully the cough is getting a lot better and she is almost completely off nebs. Sadly we have used so much neb meds again that we are in the run around to get more from our insurance company. Have I stated lately that I don't like that we have to use the mail order pharmacy from our insurance company? I know the thought is that it will make it easier however it does not. More often then not it is a total pain. And the worst part is that for many of Jillian's meds it is cheaper to get them at Walgreens.
Insurance:
Do you want to hear our cool news?!?!? This week Jillian was approved for Katie Beckett. That is a state insurance for kids with significant medical needs. The hope is that it will help to pay for her very expensive formula and her medications. As cool as that is, this process has been HARD for Brent and I. We know it will help Jillian and help our family but surprisingly there was a lot of emotions with this. Brent and I are not people to go seeking charity. We will try as hard as we can to do it on our own. Applying for and accepting state funds is not easy for us. Also in this process the state looks over all of your child's medical records and the child has to be deemed "disabled" under the standards of the Social Security Act. It is one thing to know your child has a lot of medical struggles, it is another thing for the state to say it. You never think your kid will be one of "those" kids until your kid is. We try so hard to give Jillian a "normal" life. She has seen so much and been through so much in her little life already, but she is one strong girl!
Run/Walk:
This year we are participating in the run/walk for Children's Hospital of Wisconsin again. I am really excited! I love this walk because we get to give back to a place that give SO much to us! I am sure I will be posting more about this later, but I just wanted to give a little shout out now because it has really been on my mind as I have been getting everything started and organized for Team Jilli!
 |
| Her dolls going into her sturdy walking toy |
 |
| Just chilling in my rock-n-play taking a neb |
 |
| If I smile real cute no one will notice I'm playing with mom's keys... |
 |
| She loves the monkey's nose! |
 |
| Surgeon tubie monkey! |
 |
| Chilling with her uncle Dan |
 |
| The girl on this bag has not been retouched! lol! With Jess |
 |
| Playing trains |
 | |
| Her "burn" this picture does not look nearly as bad as it looked in person |
 |
| holding her paper to get stuff off her arms in the elevator |
 |
| Holding it while mommy gets coffee |
 |
| Taking Selfies to pass the time at the hospital |
 |
| Putting coins in her piggy bank (one of her FAVORITE things!) |
 |
| Our new table |
Tuesday, May 13, 2014
Genetics
Yesterday was a crazy day!
The morning started with Jillian waking up with a 101.7 temp, a respiratory rate over 60 and nosily breathing. We started a neb right way and gave her Tylonal. Jilli and I had spent the night at my parents because my mom came with us to genetics. Our plan was to go to the really cool park in Franksville however fevers equal no park. Jilli slept off and on all morning. Around noon we headed out towards Milwaukee. We hit bad weather along the way. There was a lot of rain and our phones kept going off with alerts.
We got to genetics and ran through to down pouring rain into the building. We went up and and got checked in. They took her back and weighed her. Then the genetic counselor came in and we went over a lot of info and she did a developmental assessment.
Then the doctor came in. He said that Jillian has too much going on for the to all be coincidence. He said that no super common disorder jumps out to him so we are going to go looking for less common things. He is taking a 3 tier approach:
1. 5 very large viles of blood, urine collection (still trying to get her to pee in a bag...) and a sweat test (which will be done Monday morning)
2. MRI and Kidney ultrasound
3. Muscle biopsy and genetic sequencing
Based on results from each tier we will decide what the best next step is. They want to move quickly. We see them again in August but they will be contacting us over the phone before then to discuss test results.
I was excited that someone is really listing to us and looking for a reason not just a band-aid. He really listened to us and heard what we had to say. Thank you to everyone who was praying for our appointment!
The part that hit me hardest was the developmental assessment. The are two words that are blaring... no screaming at me off of her after visit summery "Developmental Delay." That statement kills my heart. I know it is true but as someone with a special ed degree having your child diagnosed is a hard hit. They said that she functions at a 10-12 month old. I know they are right. She turns 17 months tomorrow. That puts her 6 months behind. For a child who is less then a year and a half old a six month delay is large. They said that she needs therapies in multiple areas. Luckily I had spoken to Birth to 3 again on the drive there and they are coming out Monday to do a comprehensive eval.
He also looked at her ears while she was there. She had been pulling at the one all day and since she had a fever I thought it might be her ears. He said the bottom of one looked a little red and the other one was too full of wax to see. He said that if she still had symptoms in the morning to take her to the doctor.
After we left the genetics clinic we headed over to the lab. I have decided that the lady who drew Jillian's blood yesterday is amazing! One prick, no digging, easy! This woman should make a lot of money.
We then left Children's and headed to our house. As we were getting off of the interstate onto hwy 12 the tornado sirens started to go off. I then debated to head over to the day care or keep going. The sky looked better south so we kept going. We got to Lake Geneva and the sirens were going off again and there was talk of rotation in the clouds in Lyons and Lake Geneva so we decided it was best to get off the highway just as it started to hail. We ran into the Piggly Wiggly. Once the storm passed we headed over to Pizza Hut to pick up our order. Then we headed to the house and ate dinner. Jillian's temp had slowly gone down during the day but was still needing nebs. In the evening she crawled over to her rock-n-play and tried to get in. For Jillian that is a sign that she needs a neb. She always sits in her rock-n-play when she takes a neb and it is weird but she is getting to the point when she knows when she really needs one.
During the night she was up a lot with either coughing or the thunder. It was a long night.
She got up this morning a still needed nebs and was coughing so I decided to call the nurse practitioner. We got there and she said that her ears looked good. She thinks she is pulling at her ears because of her teeth. She had one molar come in Friday and is working on a second. She has 4 more teeth on their way too. Her lungs have a little rattle and sound irritated but not pneumonia. It is either a virus or from the pool water she swallowed. She does not think that she needs antibiotics right now. She looked at her mouth too. Jilli still has thrush. We are going to try a different med, however after we left the nurse called and said that the NP figured out after we left that it can have a side affect with one of Jillian's GI meds so she wants to call GI before she starts her on the med. She also said that she is really interested in the genetic test results because it might point to why we can't seam to get rid of Jillian's thrush.
So 2 doctors in two days. Thankfully each of them has a plan for how to help Jilli.
The morning started with Jillian waking up with a 101.7 temp, a respiratory rate over 60 and nosily breathing. We started a neb right way and gave her Tylonal. Jilli and I had spent the night at my parents because my mom came with us to genetics. Our plan was to go to the really cool park in Franksville however fevers equal no park. Jilli slept off and on all morning. Around noon we headed out towards Milwaukee. We hit bad weather along the way. There was a lot of rain and our phones kept going off with alerts.
We got to genetics and ran through to down pouring rain into the building. We went up and and got checked in. They took her back and weighed her. Then the genetic counselor came in and we went over a lot of info and she did a developmental assessment.
Then the doctor came in. He said that Jillian has too much going on for the to all be coincidence. He said that no super common disorder jumps out to him so we are going to go looking for less common things. He is taking a 3 tier approach:
1. 5 very large viles of blood, urine collection (still trying to get her to pee in a bag...) and a sweat test (which will be done Monday morning)
2. MRI and Kidney ultrasound
3. Muscle biopsy and genetic sequencing
Based on results from each tier we will decide what the best next step is. They want to move quickly. We see them again in August but they will be contacting us over the phone before then to discuss test results.
I was excited that someone is really listing to us and looking for a reason not just a band-aid. He really listened to us and heard what we had to say. Thank you to everyone who was praying for our appointment!
The part that hit me hardest was the developmental assessment. The are two words that are blaring... no screaming at me off of her after visit summery "Developmental Delay." That statement kills my heart. I know it is true but as someone with a special ed degree having your child diagnosed is a hard hit. They said that she functions at a 10-12 month old. I know they are right. She turns 17 months tomorrow. That puts her 6 months behind. For a child who is less then a year and a half old a six month delay is large. They said that she needs therapies in multiple areas. Luckily I had spoken to Birth to 3 again on the drive there and they are coming out Monday to do a comprehensive eval.
He also looked at her ears while she was there. She had been pulling at the one all day and since she had a fever I thought it might be her ears. He said the bottom of one looked a little red and the other one was too full of wax to see. He said that if she still had symptoms in the morning to take her to the doctor.
After we left the genetics clinic we headed over to the lab. I have decided that the lady who drew Jillian's blood yesterday is amazing! One prick, no digging, easy! This woman should make a lot of money.
We then left Children's and headed to our house. As we were getting off of the interstate onto hwy 12 the tornado sirens started to go off. I then debated to head over to the day care or keep going. The sky looked better south so we kept going. We got to Lake Geneva and the sirens were going off again and there was talk of rotation in the clouds in Lyons and Lake Geneva so we decided it was best to get off the highway just as it started to hail. We ran into the Piggly Wiggly. Once the storm passed we headed over to Pizza Hut to pick up our order. Then we headed to the house and ate dinner. Jillian's temp had slowly gone down during the day but was still needing nebs. In the evening she crawled over to her rock-n-play and tried to get in. For Jillian that is a sign that she needs a neb. She always sits in her rock-n-play when she takes a neb and it is weird but she is getting to the point when she knows when she really needs one.
During the night she was up a lot with either coughing or the thunder. It was a long night.
She got up this morning a still needed nebs and was coughing so I decided to call the nurse practitioner. We got there and she said that her ears looked good. She thinks she is pulling at her ears because of her teeth. She had one molar come in Friday and is working on a second. She has 4 more teeth on their way too. Her lungs have a little rattle and sound irritated but not pneumonia. It is either a virus or from the pool water she swallowed. She does not think that she needs antibiotics right now. She looked at her mouth too. Jilli still has thrush. We are going to try a different med, however after we left the nurse called and said that the NP figured out after we left that it can have a side affect with one of Jillian's GI meds so she wants to call GI before she starts her on the med. She also said that she is really interested in the genetic test results because it might point to why we can't seam to get rid of Jillian's thrush.
So 2 doctors in two days. Thankfully each of them has a plan for how to help Jilli.
 |
| Sick Jilli |
 |
| All of the tests they ordered yesterday |
Monday, May 12, 2014
Mothers Day Weekends 2014
Our mother's day weekend started on Friday after work. My gift from Jillian and Brent was flowers delivered to work, bagels from my favorite bagel store and family time at Timber Ridge Lodge at the Grand Geneva.
Brent's work had a deal were we could stay at Timber Ridge for less then a cheep hotel, and with staying at Timber Ridge we got to play in a waterpark.
We met there after work and checked it. We went to the BBQ restaurant at the hotel and Jillian was adorable making faces at everyone in the restaurant. We got ready and headed down to the pool. Jillian loved the pool. They have a nice kid area and she had a blast crawling around. She decided to see what would happen if she stuck her head in the pool with her mouth open... silly girl. This did not work well for her later when she started not feeling good from her split second time taking on water. We played hard in the water park, spending some time in the lazy river at the end. That night Jillian was a little crabby but she had also poked through a molar earlier in the day.
By 6am Saturday Jillian was coughing her horrible, awful, cough. That cough tells me instantly that some of that water made its way to her lungs. We started a neb right away. We got dressed and headed over to the main building of the Grand Geneva and grabbed coffee at their coffee shop. We then went back to the room, got our swim stuff on a headed back to the pool. Jillian was a little sleepy at first but then got excited again. She loved going down the kid slides and playing with the water jets. It was an amazing time and just what we needed as a family. We will defiantly go back sometime. It is close to our house making it easier to go with all of Jillian's stuff. The rooms are huge and have a full kitchen with a fridge and a blender. (we use a blender to make Jillian's formula). I suggest it to anyone with kids.
We then headed back to our house and changed our clothes, grabbed a few things and hit the road for Kenosha. We met my mom at Penara for lunch. Then we headed over to Kohls. Brent needed shorts for the summer and I needed sandals. Amazingly we both found what we were looking for at one store! We then walked down to Tuesday Mornings and walked around. Lastly we stopped a shoe store. Jillian loved the wall of Crocs and took her own shoes off and showed me her feet because she wanted the Crocs on her feet. She is so silly. We tried a pair on but they dont start until a size 4/5 and that is really big for this tiny footed little girl. The one sales associate fell in love with Jillian and talked to us for a long time.
We then headed back to mom and dad's house to get Jillian another neb.
We decided to go out for mother's day with mom on Saturday night because we figured restaurants would be busy on Sunday. We went to Olive Garden and had a good time.
Sunday morning Dad and Brent had to be at church early because dad was playing and Brent had lights. Jilli got a bath in the morning and then after her bath she had a nose killing diaper. Mom, Seth, Jilli, and I went to the 10:30 service. We got to church and realized that Jillian's passy and clip was left at the house in one of her coughing fits. I had an extra passy in the diaper bag and gave it to her. While we were singing Jillian started coughing again and her passy flew out, hitting the floor. Even with multiple people so kindly looking for it we could not find it during the service. It was then 11:00 and she needed another neb so I took her out into the foyer and we did a neb. After the neb she was rather hyper so we stayed out in the foyer until after service was over. We went back in a found her passy on the floor in the row in front of us.
We then headed to Charcoal Grill for brunch with Brent's parents and brother. My cousin and her fiance we leaving the restaurant as we were headed in and we stopped and talked to them for a minute. Lunch was good. We saw Brandon for the first time since Christmas. Jillian was sleepy and needed a nap but was a really good.
We headed back to my parent's house so Jillian could take a nap. After her nap my dad got down my old Little Tikes ride on toy from the rafters. Jillian loved playing with it.
We then headed to my grandparents for dinner. Jillian showed off her new skill... steps! She started last Tuesday with taking two steps. Saturday she took a couple more and Sunday she took even more. She is at the stage were you stand her up someplace and she will take a few steps to someone once she gets her balance. She is so proud of herself. It has taken a lot of work to get her to this place and she has worked so hard. She will be taking off all on her own soon!
After we left my grandparent's Brent headed home and Mom, dad, seth, Jilli and I stopped over at my grandma's house. We visited for a little bit and then headed out. We were all a little hungry and wanted dessert but could not decide what we wanted. We stopped at Pick N Save and Dad, Seth and I went it. You know you are a true Wisconsiner when you stand and stair at a large case of cheese with a big smile on your face. We could not decide what we wanted for dessert so we got 4 little things and took them to the house and shared. We also bought some of that mozzarella and cherry tomatoes and Seth and I made our own little caprese snack. Overall it was a great mothers day!
Jillian has continued to cough and struggle to breathe. She is slowly getting better over the weekend and I am very hopeful that we should only need nebs for a couple more days. This is just a reminder about how fast things can change with Jillian. She got less then a mouth full of water and it is causing a bunch of problems for her. A normal kid would not have struggled with it, but for Jilli its different.
Today we see genetics! I'll update more later!
Brent's work had a deal were we could stay at Timber Ridge for less then a cheep hotel, and with staying at Timber Ridge we got to play in a waterpark.
We met there after work and checked it. We went to the BBQ restaurant at the hotel and Jillian was adorable making faces at everyone in the restaurant. We got ready and headed down to the pool. Jillian loved the pool. They have a nice kid area and she had a blast crawling around. She decided to see what would happen if she stuck her head in the pool with her mouth open... silly girl. This did not work well for her later when she started not feeling good from her split second time taking on water. We played hard in the water park, spending some time in the lazy river at the end. That night Jillian was a little crabby but she had also poked through a molar earlier in the day.
By 6am Saturday Jillian was coughing her horrible, awful, cough. That cough tells me instantly that some of that water made its way to her lungs. We started a neb right away. We got dressed and headed over to the main building of the Grand Geneva and grabbed coffee at their coffee shop. We then went back to the room, got our swim stuff on a headed back to the pool. Jillian was a little sleepy at first but then got excited again. She loved going down the kid slides and playing with the water jets. It was an amazing time and just what we needed as a family. We will defiantly go back sometime. It is close to our house making it easier to go with all of Jillian's stuff. The rooms are huge and have a full kitchen with a fridge and a blender. (we use a blender to make Jillian's formula). I suggest it to anyone with kids.
We then headed back to our house and changed our clothes, grabbed a few things and hit the road for Kenosha. We met my mom at Penara for lunch. Then we headed over to Kohls. Brent needed shorts for the summer and I needed sandals. Amazingly we both found what we were looking for at one store! We then walked down to Tuesday Mornings and walked around. Lastly we stopped a shoe store. Jillian loved the wall of Crocs and took her own shoes off and showed me her feet because she wanted the Crocs on her feet. She is so silly. We tried a pair on but they dont start until a size 4/5 and that is really big for this tiny footed little girl. The one sales associate fell in love with Jillian and talked to us for a long time.
We then headed back to mom and dad's house to get Jillian another neb.
We decided to go out for mother's day with mom on Saturday night because we figured restaurants would be busy on Sunday. We went to Olive Garden and had a good time.
Sunday morning Dad and Brent had to be at church early because dad was playing and Brent had lights. Jilli got a bath in the morning and then after her bath she had a nose killing diaper. Mom, Seth, Jilli, and I went to the 10:30 service. We got to church and realized that Jillian's passy and clip was left at the house in one of her coughing fits. I had an extra passy in the diaper bag and gave it to her. While we were singing Jillian started coughing again and her passy flew out, hitting the floor. Even with multiple people so kindly looking for it we could not find it during the service. It was then 11:00 and she needed another neb so I took her out into the foyer and we did a neb. After the neb she was rather hyper so we stayed out in the foyer until after service was over. We went back in a found her passy on the floor in the row in front of us.
We then headed to Charcoal Grill for brunch with Brent's parents and brother. My cousin and her fiance we leaving the restaurant as we were headed in and we stopped and talked to them for a minute. Lunch was good. We saw Brandon for the first time since Christmas. Jillian was sleepy and needed a nap but was a really good.
We headed back to my parent's house so Jillian could take a nap. After her nap my dad got down my old Little Tikes ride on toy from the rafters. Jillian loved playing with it.
We then headed to my grandparents for dinner. Jillian showed off her new skill... steps! She started last Tuesday with taking two steps. Saturday she took a couple more and Sunday she took even more. She is at the stage were you stand her up someplace and she will take a few steps to someone once she gets her balance. She is so proud of herself. It has taken a lot of work to get her to this place and she has worked so hard. She will be taking off all on her own soon!
After we left my grandparent's Brent headed home and Mom, dad, seth, Jilli and I stopped over at my grandma's house. We visited for a little bit and then headed out. We were all a little hungry and wanted dessert but could not decide what we wanted. We stopped at Pick N Save and Dad, Seth and I went it. You know you are a true Wisconsiner when you stand and stair at a large case of cheese with a big smile on your face. We could not decide what we wanted for dessert so we got 4 little things and took them to the house and shared. We also bought some of that mozzarella and cherry tomatoes and Seth and I made our own little caprese snack. Overall it was a great mothers day!
Jillian has continued to cough and struggle to breathe. She is slowly getting better over the weekend and I am very hopeful that we should only need nebs for a couple more days. This is just a reminder about how fast things can change with Jillian. She got less then a mouth full of water and it is causing a bunch of problems for her. A normal kid would not have struggled with it, but for Jilli its different.
 |
| my flowers! |
 |
| She is sooo cute in her swim suite! |
 |
| Getting coffee |
 |
| Daddy and Jilli in the water park. She just wanted in the water |
 |
| I love her sunglasses! |
 |
| Mother's day selfie |
 |
| Chilling while taking a neb |
 |
| Enjoying the little car |
 |
| Dessert! |
Today we see genetics! I'll update more later!
Monday, May 5, 2014
50th Wedding Anniversary
This weekend we were busy! We spent the weekend celebrating my grandparent's 50th wedding anniversary!
Friday Jillian and I had off. She slept in and I baked over 100 cookies for the party. During the day we hung out around the house and got packed and things ready for the party. That night we all (including Dan) headed into Kenosha and we had pizza and hung out.
Saturday morning we got up and Dad make Swedish pancakes. Mom, Jilli and I headed out to the rummage sales in Whitecaps. I found exactly what I was look for! Jillian got the Little People doll house for $2 and we found a Fisher-Price infant to toddler rocker for $5! The boys all went out and played disk golf while we rummaged!
At noon mom, Jilli and I headed over to the hall. Mom and I were in charge of decorations. We got most of the decorating done quickly. Dad and Brent came over and picked up Jillian and ran to the store with her while mom and I ran to Target and Party City to pick up a few more things that were needed. We then all met back at the house and got ready.
At 4 we headed over to the hall to get things finished up and people started to arrive at 6. It was a fun night.
My family has a crazy tradition at anniversary parties of doing a mock wedding. I really mean crazy! Well it was decided that this time the older grandchildren would be the wedding party to pass the crazy tradition on to the next generation. We all dressed up in funny clothes and had a mock wedding officiated by Elvis.
After the mock wedding Brent, Dan, Seth, Jess, Delana, Ryan and myself went over to my grandparent's house and toilet papered the inside of the house. We use to do this when we were little and a member of the family would go on vacation, however we have not done it in years! We thought this was the prime time to start the tradition back up.
We then headed back to the party and hung out with family and friends. It was a fun night and great to see so many people I had not seen in years!
Brent, Seth, Jilli and Dan headed back to mom and dad's and mom, dad and myself stayed to clean up. We then went over to my grandparent's house to drop stuff off. They thought the toilet paper was the perfect topper to the night. We opened their gifts and cards and then headed home.
Sunday morning Seth and Brent had to be at church early to do sound and slides. Well the rest of did not get out of bed in time to make it to church. For lunch we went over to my grandparent's house and ate leftovers with my aunts, uncle and cousins. We then headed back home.
It would not have been a party however without Jillian doing something a little crazy. Saturday morning we tried not taping her tube in place since it has been over a month since we changed to a button and it should not need to be taped in place not to spin. Well apparently it does still need to be taped in place because I looked at it part way through the party and sure enough it had spun about 90 degrees so far. We need to have that changed next month so hopefully it will not spin so much after that, until then we tape!
Friday Jillian and I had off. She slept in and I baked over 100 cookies for the party. During the day we hung out around the house and got packed and things ready for the party. That night we all (including Dan) headed into Kenosha and we had pizza and hung out.
Saturday morning we got up and Dad make Swedish pancakes. Mom, Jilli and I headed out to the rummage sales in Whitecaps. I found exactly what I was look for! Jillian got the Little People doll house for $2 and we found a Fisher-Price infant to toddler rocker for $5! The boys all went out and played disk golf while we rummaged!
At noon mom, Jilli and I headed over to the hall. Mom and I were in charge of decorations. We got most of the decorating done quickly. Dad and Brent came over and picked up Jillian and ran to the store with her while mom and I ran to Target and Party City to pick up a few more things that were needed. We then all met back at the house and got ready.
At 4 we headed over to the hall to get things finished up and people started to arrive at 6. It was a fun night.
My family has a crazy tradition at anniversary parties of doing a mock wedding. I really mean crazy! Well it was decided that this time the older grandchildren would be the wedding party to pass the crazy tradition on to the next generation. We all dressed up in funny clothes and had a mock wedding officiated by Elvis.
After the mock wedding Brent, Dan, Seth, Jess, Delana, Ryan and myself went over to my grandparent's house and toilet papered the inside of the house. We use to do this when we were little and a member of the family would go on vacation, however we have not done it in years! We thought this was the prime time to start the tradition back up.
We then headed back to the party and hung out with family and friends. It was a fun night and great to see so many people I had not seen in years!
Brent, Seth, Jilli and Dan headed back to mom and dad's and mom, dad and myself stayed to clean up. We then went over to my grandparent's house to drop stuff off. They thought the toilet paper was the perfect topper to the night. We opened their gifts and cards and then headed home.
Sunday morning Seth and Brent had to be at church early to do sound and slides. Well the rest of did not get out of bed in time to make it to church. For lunch we went over to my grandparent's house and ate leftovers with my aunts, uncle and cousins. We then headed back home.
It would not have been a party however without Jillian doing something a little crazy. Saturday morning we tried not taping her tube in place since it has been over a month since we changed to a button and it should not need to be taped in place not to spin. Well apparently it does still need to be taped in place because I looked at it part way through the party and sure enough it had spun about 90 degrees so far. We need to have that changed next month so hopefully it will not spin so much after that, until then we tape!
In the Windy City
Last Saturday (4/26) my mom and I took Jillian down to the Museum of Science and Industry in Chicago to see a Disney exhibit. Mom and I have been trying to get there since October but it has never worked out until now... right before the exhibit we wanted to see was going to leave. It was kinda a now or never.
We drove down. My mom taught me when I was little that if you are on the interstate and it stops moving then you should figure out a different way. We always called these trips adventures. Well my phone was showing red on the interstate once we got past a certain exit, so we decided to get off and take the city streets. I had not been in the city for several years. We headed east to get on Lakeshore Drive. We took a wrong turn at one point and interestingly enough ended up in front of the children's hospital. I had always wondered exactly where that was and now I know. See our travel destinations are partially decided upon by how close we are to a children's hospital. Regular hospitals are not equip with needs for a kid like Jilli. We took her to a local hospital a month ago and they willing admitted that they were not set up to handle a kid like her. So we travel were we can best get help for her if the need were to arise. So its good to know where help is when we are in Chicago.
We ended up at the museum in the early afternoon and headed in to play. Because I am a teacher I got free basic entry into the museum! We were assigned a time for the Disney exhibit so we went and looked at the baby chicks and the trains before it was our turn. I loved the Disney exhibit. Jilli kept going oooohhhh when she would see Mickey. Disney world is one of my happy places and since I have no idea when we might end up back there, this was a good compromise. The exhibit showed the history of Walt Disney and you were able to see a lot of interesting facts about the parks.
After we left the exhibit they had a little shop. The shop had Disney pins and since the exhibit was leaving they were on clearance! I was so excited.
We then headed over to the weather area. Jillian liked to watch the indoor tornado. We then headed to the streets of yesteryear and got some ice cream for lunch. Next we headed to the body exhibit and we showed Jillian what a digestive system looked like. There was also this thing were you would look at x-rays and ultra sounds and such of different body parts. Some other people were playing with it and were watching a scope from the nose to the vocal cords. Jillian had this scope done last February.She was awake for the scope as it was done in the ENT's office. I got to hold her while they did it. The people watching this video were grossed out.
After the body area we went to the little kid play area where Jillian loved to play with the balls. A little girl really like Jilli and kept helping her get the balls and put them in the correct place. It was really cute
After that the museum closed for the day so we headed to the gift shop and then left. We went to Old Orchard Mall. My cousin Sara works there and it was the first time we were able to see her store. I had not been down to the mall in years. I was super excited when we went into Janie and Jack because they had a giraffe shorts they had last season on clearance for a reasonable price. She is going to look adorable in them! We went over to California Pizza Kitchen for dinner. Mom and I split a pizza and still had to take some home. It was then time to go home.
We got back to the house and the boys headed out to met Brent's dad at Ron's Place. Mom, Jilli and I headed to bed. It was a fun day!
We drove down. My mom taught me when I was little that if you are on the interstate and it stops moving then you should figure out a different way. We always called these trips adventures. Well my phone was showing red on the interstate once we got past a certain exit, so we decided to get off and take the city streets. I had not been in the city for several years. We headed east to get on Lakeshore Drive. We took a wrong turn at one point and interestingly enough ended up in front of the children's hospital. I had always wondered exactly where that was and now I know. See our travel destinations are partially decided upon by how close we are to a children's hospital. Regular hospitals are not equip with needs for a kid like Jilli. We took her to a local hospital a month ago and they willing admitted that they were not set up to handle a kid like her. So we travel were we can best get help for her if the need were to arise. So its good to know where help is when we are in Chicago.
We ended up at the museum in the early afternoon and headed in to play. Because I am a teacher I got free basic entry into the museum! We were assigned a time for the Disney exhibit so we went and looked at the baby chicks and the trains before it was our turn. I loved the Disney exhibit. Jilli kept going oooohhhh when she would see Mickey. Disney world is one of my happy places and since I have no idea when we might end up back there, this was a good compromise. The exhibit showed the history of Walt Disney and you were able to see a lot of interesting facts about the parks.
After we left the exhibit they had a little shop. The shop had Disney pins and since the exhibit was leaving they were on clearance! I was so excited.
We then headed over to the weather area. Jillian liked to watch the indoor tornado. We then headed to the streets of yesteryear and got some ice cream for lunch. Next we headed to the body exhibit and we showed Jillian what a digestive system looked like. There was also this thing were you would look at x-rays and ultra sounds and such of different body parts. Some other people were playing with it and were watching a scope from the nose to the vocal cords. Jillian had this scope done last February.She was awake for the scope as it was done in the ENT's office. I got to hold her while they did it. The people watching this video were grossed out.
After the body area we went to the little kid play area where Jillian loved to play with the balls. A little girl really like Jilli and kept helping her get the balls and put them in the correct place. It was really cute
After that the museum closed for the day so we headed to the gift shop and then left. We went to Old Orchard Mall. My cousin Sara works there and it was the first time we were able to see her store. I had not been down to the mall in years. I was super excited when we went into Janie and Jack because they had a giraffe shorts they had last season on clearance for a reasonable price. She is going to look adorable in them! We went over to California Pizza Kitchen for dinner. Mom and I split a pizza and still had to take some home. It was then time to go home.
We got back to the house and the boys headed out to met Brent's dad at Ron's Place. Mom, Jilli and I headed to bed. It was a fun day!
 |
| Looking at the hatched chicks |
 |
| What an animator's desk looks like |
 |
| Jilli and I in the Disney exhibit |
 |
| Playing with this cool magnet thing... Jilli hopped her foot would work |
 |
| This is the digestive system |
 |
| A little Jilli sized fountain. |
 |
| She loved crawling through the obstetrical. |
 |
| Gears! |
 |
| trying to get the ball out of the pond |
 |
| Putting the ball up the tube |
 |
| on a tractor! |
 |
| True Wisconsin girl on a cow! |
 |
| Her new Janie and Jack giraffe shorts and my pin |
 |
| She loved wearing her new Disney lanyard. |
Subscribe to:
Posts (Atom)