Sickness update

My mom and I were talking on Friday night how I always feel like we are minutes away from a sickness at our house. In reality we are, having a kid who gets sick a lot changes your way of thinking. All plans are tentative, thats just the way it is.

Jilli needed nebs this weekend but inbetween nebs she did pretty good. She had a gunky nose but most of the weekend she just kept going. Monday she slept in a little and we went to therapy where she worked really hard. We came home and Brent was home early because he was not feeling great. He and I both had the same thing just 24 hours apart. It was just the feeling you get right before you get sick, where your body just feels icky but nothing specifically is wrong. It lasted for 8 hours for each of us and then we were fine. Monday Jilli needed 3 nebs during the day but had times of playing so I figured we were probably on the back end of whatever she had going on.
Tuesday morning at 2:30 Brent and I both woke up to the sound of barking. This was the worst cough she has had in a long time. She was struggling to catch her breath. We started her neb and turned on oxygen for her. We also turned up the humidifier. I listened to her lungs and the lobes sounded alright, I could not pinpoint a spot of pneumonia. Brent and I debated bring her to the ER. We are not parents who run our kid someplace just because of a runny nose, we had been doing neb treatments for 3 days and had just been handling it by ourselves, however she was really rough at that point. We decided to give the neb time to work as I sat next to her bed watching her breathe. Around 3:30 (half hour neb, they take about a half hour to fully kick in) she started to fall back to sleep and her breathing started to settle. Around 4am she woke up coughing again but it lasted less then 5 minutes.
Around 8am I went to go to the bathroom and as I was walking up the stairs I could hear her wheezing from the hallway so I went in and woke her up and started a neb.
My mom came over as she is on spring break. We had plans that she was going to go to my OB appointment with Jilli and I and then we had stuff planned for the afternoon, however with the night we had we decided it was best for mom to stay at the house with Jillian while I went to my OB appointment. I had my blood sugar test that morning too and was not to have any coffee before the test so that just added to the morning. The blood sugar test went fine, I got a head ache from it but I did not feel as sick as I did when I took it with Jilli. My doctor and I had a good conversation about "this" and what it means for delivery which was really good.
Jilli spent most of the morning just sitting and rather lethargic. I called to get her into the nurse practitioner (her ped does not work on Tue) and they said her schedule was full. I asked them to send a message to the nurse practitioner about what was going on with Jillian and then I got a phone call a little while later saying the nurse practitioners would squeeze us in. I am so grateful for the nurse practitioner. She knows Jillian and keeps up with her case. She also knows that when I am calling and saying we need to be seen that I have tried all of the first steps already.
Mom and I took Jilli in. She did not have a fever and her pulse ox looked good (she was on oxygen). She listened to her lungs and said that you could tell that the nebs are doing what they need to do and to just keep doing them as often as needed (we were doing them every 4 hours at this point). She said she thought whatever this illness is was at its climax and to just keep doing what we are doing but that if she starts getting worse, develops a fever, or is not off nebs by Friday to come back in.
She played more in the afternoon/evening then she had in the morning. Still mainly sitting and coloring or playing board games but at least she was not just sitting on the couch.
We gave her a neb last night right before she went to sleep and she made it through the night without needing a neb. I woke up to her breathing a little funny once but it only lasted about a minute and then she was back to breathing better. It is a little after 8am now and she is still sleeping. Our plan for today was to take her to a children's museum but it looks like we are going to scale our plans back and look for something to do closer to home that takes less energy. Life is all about adapting!
I am really grateful for my mom coming over yesterday and hanging out. She was such a big help and I really appreciate it! I was running on little sleep and the joys of the sugar filled drink so it was nice to have an extra set of hands here to help out. I'm thankful for Brent too. He called me in the afternoon and told me not to worry about dinner, he would take care of picking something up on his way home, which I really appreciated.

Sleepy girl doing a ned

Coloring while doing a neb in the afternoon

Happy Easter!

Happy Easter everyone! I hope it was fun!

We started our Easter celebrations on Wednesday. We met Brent's parents in Burlington for dinner at Fred's (wanna make a restaurant go silent... apparently all you have to do is walk in with a kid on oxygen, lol!) Before we went for dinner, Jilli and I went to the park. I brought her trike with as that is something we are working on in therapy. She is one smart little girl! Her left leg is stronger then her right leg and she figured out a funny way of peddling so she does half a turn with her left leg and then brings the peddle back and does another half turn with her left leg... nice adapting child... but we want you to work both of your legs please! Like many things in life, Jilli just finds the way of doing something that works best for her, it will serve her well in the long run and she is a tough little fighter.

Thursday Jillian had an appointment with audiology. Turned out just the same as the last 5 times... they do the normal tones and she reacts fine, they move to the high tones and she reacts just fine and then they move to the low tones (the ones I know she can not hear) and she does not react. Well after sitting there for a while she gets board of not hearing anything so she starts to get antsy so they end the test. We have now done this 6 times and 6 times is has gone the EXACT same way. We met with the audiologist at the end and she said the test was inconclusive because she started to get antsy... ahhh! She said that Jillian does not have a profound hearing loss, which I agree with, it is just low tones that she struggles with. She wanted to repeat the test in June, I told her I am delivering a baby in June and do not wish to repeat this 38 weeks pregnant or with a newborn so I told her we would come back in May. If I thought there was some good reason it needed to be done in June I would be more then happy to make it work, however I have a feeling we are just going to do the same thing for the 7th time with the same results... I think someone once said insanity is doing the same thing over and over and expecting different results...

After audiology we drove to Lake Geneva in the snow and met Brent at Potbelly's for dinner. We then headed over to the library with PJ story time. Since it was snowing we were the only family that showed up. Jilli thought it was great to have story time to herself. She also really liked getting to bring daddy to story time. Brent took her to the bathroom at one point to get a new diaper and the librarian asked me about why Jillian has all the tubes. She was really kind about it and I did not mind at all answering her questions.

Friday Brent only had to work a part day so then he came home and we headed into Kenosha. He went to go see a movie with friends and Jilli and I hung out with my parents. Saturday morning Jilli got her first hair cut! Brent and I had both been putting it off as it was something we were planning on having grandma Jill do before she died, so scheduling Jillian's first hair cut with someone else was really hard for both of us but Jillian's bangs were in her eyes so we needed to do something. My hair has been cut most of my life by the same person (grandma started cutting my hair when I was 17 until they moved to Florida) and she was very excited to help us with Jillian's first hair cut. Jilli sat like such a big girl! Saturday night we had a family friend over to my parent's house for dinner and it was nice to just hang out and eat and talk.

Sunday morning we got up and did an Easter egg hunt (Brent was already at Church as he was doing sound) Jilli was all excited that the eggs were filled with passies and jewelry. We then headed to church. We came home from church and got a few things ready and then my mom's side of the family all came over for brunch. We had fun hanging out. Jilli got to do another egg hunt and she got two Easter baskets. Everyone headed home and then we worked on packing our stuff up and headed home too.

Since its Easter and someone always has to be sick for Easter (this was a thing when Seth and I were little, one of us were always sick around Easter... we both have allergies to Easter Lillies and spring) Jilli decided this year was her turn. Saturday morning I woke up to the crashing sound of Jillian's pump (she pulled it down) and her barking. She was mainly stomach breathing. We got out the neb and started that right way. Her nose was running and her cheeks were bright red, but no fever. After the neb she started to perk up. On Saturday she only needed two nebs and on Sunday she needed three. She still had a fun weekend even with a runny nose. You could tell a few times that she was not feeling well, but most of the time she just kept going. She is a trooper!

It was a fun weekend and even though busy, still relaxing. Today I need to put all the Easter stuff away and then I think we are just hanging out. She is still asleep which does not surprise me, so I am guessing that other then PT today she will just rest.

Getting ready to ride!

She loves to pretend to drive (a few weeks ago she had a melt down because I would not let he drive the car...)

She had a blast at the park!

She wanted to drive one last time before we left... she sang we wheels on the bus

She painted GG a bunny for her birthday... she loves to do projects!

daddy reading to her at the library before story time started

She was looking at the hair cut books... I asked her which one she wanted and she told me they were all to crazy for her

Sitting like a big girl

For some reason part way through she insisted she needed to hold her arms up

All done!

She approved :)

Opening her Easter basket

She and Bumpa have a game of putting buckets on their head and yelling bucket head... so obviously you must do that with the Easter bucket too!

Opening her eggs... she also got a Questcom from Miles from Tomorrowland. She frequently will talk into her wrist pretending to be Miles and she was SO excited to get a Questcom that she had to put it right on!

Jilli in her Easter dress!

Taking her neb! She said she needed her Barabies to sit with her

She decided the neb was a trumpet (normally she uses a mask but the mask got left at home so she got to do it with her mouth) She was also not happy that I told her she could watch live TV while she took her neb... she did not like any of the kids options at that moment, I told her welcome back to the 90s, choose something thats on or don't watch tv, lol. Oh the on demand generation! 

Uncle Seth reading her a Start Wars book, while she has not seen any of the movies, she sure loves Star Wars!

After her neb she wanted to do yoga to get some of the jitters out

Happy Easter from the Upton Family!

Looking for Easter Eggs

Opening her Easter basket from my cousin Jess

They got her a supergirl costume!

Easter night cuddles! She and daddy were both tired!

Zoo class

It was a gloomy day today, however our drive to the zoo was fun. Sleep and Jillian have not been friends lately so she and I were both rather tired this morning (like Wednesday night she did not fall asleep til 11, up from 3-4:15 and then up for the day at 6:30). We decided we needed a fun drive so we blasted Disney music and had a sing along.  
Today we went to zoo class! One of Jillian's favorite things is to go to zoo class. Today was her first 3 year old zoo class which is a little longer then the 2 year old class. The class was about snakes and chameleons.  I like how zoo class has so many different activities to do and lots of crafts. After the classroom part today we all went back to the fish building and got to go behind the scenes and go upstairs above the the fish tanks and see a snake. It was pretty cool. Yeah for zoo class!
During project time one little girl asked her mom why Jillian had her oxygen on her face. The mom did a great job handling it and told her that it is just something that some kids need. To a 3 year that is a very appropriate answer and the little girl went on doing her project. The mom turned to me and apologized. I told her not to worry about it at all. We then joked around times our kids have said things to people that have made us want to crawl under a table. 
Jilli and I were leaving the fish building (they dismissed the class in the fish building) and walking to see the elephants before we left the zoo. There was a guy there with whom I assume is his granddaughter. He was off to the side of the walk way and Jilli and I walked past them (Jilli was in her stroller) and after we got a few feet past them the man yelled to me "Whats on your kids face?" I was a little taken aback. It took me a few seconds to respond that it is oxygen. He then walked quickly to catch up to me and said "she is going to be alright though right?" "Yeah?" I then talked to Jilli and walked to the elephants...
I walked away from that experience scratching my head. I am not sure where yelling to me what is on my kids face is appropriate. I also really don't know what to say when people ask if she is going to be alright. 1. because that question most of the time is not about her and not about me... it is about that person trying to feel better about a child with medical needs. They need to feel ok with it. They can't handle the thought of a sick kid so their way of handling it is to just assure themselves that nothing bad is going to happen. 2. I have no way of knowing what the future holds, especially Jillian's. I know I am going to fight hard for her and love her but there is nothing that says what tomorrow is going to be like. I have watched my child turn blue multiple times. I have handed her over to go into surgery 6 times. What is your definition of alright? Some people want to know if she will be cured, some what to know if she will get rid of the oxygen, some want to know if she is going to die... and sorry but it is rather hard for me to stand in the zoo having a conversation with at total stranger about if my child is going to die young. Would you want to be asked that?
This is not to say that I mind questions about Jillian... not at all. I would rather people ask kind questions then stare. Honestly I am so use to stares at this point because it happens every time we go out, and really 99% of the time they don't bother me because I know people are just curious (the 1% that does is when people give her a nasty look when they stare). I am fine with people asking me her name, how old she is, or even why she needs oxygen and a feeding tube... if it is done kindly.  I am more likely to engage in the conversation if the first thing someone asks me is not about her medical equipment but instead something you would ask any parent, but as long as a person is polite, I am willing to have a conversation with them. Sometimes that conversation will be short because honestly I am human too and have hard days, sometimes I'm tired and sometimes after a rough doctors appointment my mind is worn out, but if a person is kind I will put as much effort as I can into the conversation. 
So if you run into us in public, feel free to ask questions. Jilli happens to be one of my favorite subjects in the world :) and it means a lot to me when people stop to ask us how she is doing and they are genuinely asking because they care about her and us and they are accepting that sometimes not everything in this journey is rainbows and sunshine (I bet you have things in your life that are not too) but if I can ask one thing... please be respectful, think of how you would want someone talking to you about your child.

Painting her chameleon. She already had to hang it up in her play area

She made a snake out of clay and put beads on it for scales

Making her chameleon costume

She was very happy with how it turned out!

My cute little chameleon!

She got to have a snake painted on her arm!

She works so hard on craft projects!

Upstairs in the fish building at the Milwaukee zoo... while a zoo keeper tells us about a snake... Jilli wanted to touch the snake, but they said no, I was more then ok with that! Snakes are not my thing!

She had to dress up tonight for daddy and show him all of her art projects from zoo class

A weekend of ups and downs

Sometimes life is like a roller coaster...

Friday during the day Jilli was kind of tired. We normally go to library time on Friday mornings but as I was trying to get her ready she just kept falling asleep. I asked her if she wanted to go to the library and she told me she wanted to stay home and cuddle so that is just what we did. We had a kinda low key day. Brent called that he was on his way home from work and our plan was to leave as soon as he got home, but then the lovely joy of pregnancy and trying not to vomit showed up and I ended up spending the next two hours on the bathroom floor. We then left the house and headed to Kenosha. The plan with to meet my parents and brother for dinner and then the Brent and Seth were going to a movie and the rest of us were going to see Lion King at a local middle school... however because of my "fun" we were running quite behind and the boys just barely made it to the movie on time and we did not get to go see Lion King. Sometimes that is just the way life is, you gotta roll with the punches! I would not have been very much fun sitting there for a play anyhow because I started having contractions every few minutes on our way into Kenosha and they lasted most of the night, while they can be painful I don't dilate with them so they just are what they are. We spent the night at my parents.
Saturday morning we got up and Jilli convinced Bumpa to give her a bath. She has been wearing her hair up in a bun most days but she wanted it down after her bath so I was trying to get all the knots out of it and I could not figure out why her hair was such a disaster. My hair knots super easily and so does her's but this was bad, until I looked at it closer and realized that when she had sweat during the night the residue from the stickers that hold her oxygen on had ended up in her hair so it was little tiny balls of sticker goo in her hair. I ended up having to pick it out... I felt like a momma monkey grooming their young!
Brent went to go drop off his mom's lap top because he fixed the screen but then we realized in the mix of me getting sick while trying to get out the door that some things had been left at home. Mom and I had 10:30 appointments to get our toes done so we went to that and then Brent and Seth met us in the parking lot with Jillian so they could run out to our house and get the missing stuff. Mom and I then took Jilli up to Babies R Us to look for a couple of things (boo, they discontinued making my favorite bottle ice packs...). We then headed over to Kohls. I'm looking for an Easter dress for myself. I don't like to spend a ton on maternity clothes, you don't wear them for all that long, most are rather pricey, and this is our last pregnancy so it just does not make sense to buy a ton (plus I'm a stay at home mom and am still in sweat pants and a t-shirt at 2pm today...) but I wanted to find something cute for Easter... I got a good laugh out of the dress I tried on at Kohls... it was navy and white polkadots with a ribbon... non pregnant it probably would have been cute... pregnant... well the bow sat in such a way with my belly that I looked like a birthday gift! At least it was funny!
We then headed to meet the boys at Office Max to look at laptops because the hinges on mine have broken and the screen is about to fall off, this is something that Brent could fix, if the price for new hinges was not close to the price of a new lap top! After we were done at Office Max we decided we would check out what Best Buy had. We walked in the door and the place was full of balloons. I am very allergic to latex. I have had a latex allergy since I was in elementary school, it started out where I only had problems when I touch it but as I have gotten older my allergy has gotten worse and now I can not be in a closed room with lots of things that are made of latex (ie I cant go to eat at Red Robin anymore because my lungs can't handle it). For me, my allergy to latex is dangerous and serious and it dictates where I can and can not go (Saturday night the boy scout troop Brent and my brother are a part of had their annual spaghetti dinner, they have latex balloons there every year, so I don't go, its not safe). I went out to the car and took my inhaler to try to stop my lungs from crashing. We then headed to my parents were I did a neb treatment because it was getting worse. By this point I had little voice and kept yawning, which for me is a big sign that my body is in trouble. Being pregnant, an allergic reaction is nothing to mess around with and as much as I don't love going to the ER, I knew it was the best thing to do. I have had bad asthma all of my life, so does most of my family. ER visits for asthma don't freak me out, its part of life in my world, I do my best to not need to go to the hospital for my lungs but there will be times in my life that it is unavoidable. We got to the ER and I could not walk in, I needed a wheel chair... I could not talk to check in, I did not have enough air. The nurse took me back and questioned me on why I would touch latex if I was allergic to it... I did not touch it, I just walked into a building with it, a building that from the outside you could not tell was full of balloons. Everyone that came into my hospital room that night questioned me about why I would knowingly do something I was allergic to which got really frustrating fast as I try my best to avoid it, its not like I walked into Party City. My pulse ox was around 95-99 which for me is not grand... I understand pulse ox (I have a kid on oxygen) however mine NEVER goes low. I have turned colors before and it still be 100, my mom has had her lung collapsed and it still be 100, for mom and I pulse ox is not a good tool to tell if we are breathing correctly. I also NEVER wheeze... neither does my dad. However dropped pulse ox and wheezing are NOT the only signs of respiratory problems or an allergic reaction. I had diminished breath sounds (my deep breath was equal to a normal breath), I could only say a word or two and had to work at that and when I did talk I would start coughing, I had a nasty barking cough, I did not have enough air to walk into the ER, my lips were white and I was struggling to stay focused on anything. My blood pressure was 156/100! That is not good, especially for someone who is pregnant (and not flipping out, I know how this goes when a reaction like this happens and it does not make me anxious, I just want to do what I need to do to feel better so its not like my blood pressure was elevated because I was upset, no this was not what I wanted to be doing but I know how important it is to keep calm). The nurse was not liking what she was seeing and went to get the physicians assistant. This is where it all went down hill... the PA said she had never heard of latex being an airborn allergen and thus treated me like I was crazy. She said that because I was not wheezing that my lungs were fine (nurse said I had diminished breath sounds, which knowing my body I know I did). She did not give me Epi, refused to give me a neb, blew off my high blood pressure, and did not check the baby. Over a half hour after she left the room the nurse brought in two Benadryl... I was still really struggling to breath... 40min later I asked for prednisone (its a class C in pregnancy but the Benadryl was not cutting it and they would not do anything else). For me prednisone is does not do as much in the midst of the reaction but helps with the aftermath which is why I did not insist on it right away but at that point I would take what I could get. Another half hour goes by and the nurse comes in and listens to me and says my breath sounds are still diminished and took my blood pressure again and it was still high. The nurse went to get the PA as she was worried... the PA walked in and said that because I was still not wheezing they were not going to do any more for me. We asked for a neb, she said no. The PA said that I could sit there for 2 more hours for observation but they would not do any more for me. At this point I knew I desperately needed a neb and was not going to get one there so I agreed to be discharged so I could leave and do a neb. I also knew at that point that the best place for me was not in that ER not getting treatment, that if I continued to get worse I would be better off either at home where I could take the neb I needed or at a different hospital. They gave me a script for neb meds and prednisone (PA told me she would write a script for the neb meds but did not think taking them was a good idea because it would raise my pulse rate which was only at 105 when I got there after taking a neb and the nurse told me not to take the prednisone because it is a class C drug) I went back to my parents and took a neb and self treated. The rest of the night was deciding if I needed to go back to the ER or not. I was not quite making it 3 hours between neb treatments and ended up awake most of the night just trying to breathe. It sucked.
Sunday morning I did not have the energy or the lung strength to go to church so everyone else went and I stayed home. Once they got back we had some lunch and then we headed to our house. We had already booked a night at Timber Ridge for Sunday night (we caught a really good deal a few weeks ago) so we were debating if we were going to go or not. Timber Ridge is less then 10 minutes from our house and it was already paid for (and not refundable nor could you move the date) so we decided that a bed is a bed and I could rest where ever. We headed over to Timber Ridge and checked in. I like that their the pool area is comfortable, not hot and that it does not smell like chemicals. I have been to other indoor water parks and struggled to breath but I have been to Timber Ridge multiple times and have not had any issues. The three of us laid in the lazy river for a little bit but then I needed to rest and Jilli wanted to play in the kids area so Brent took her over there. We only spent about a half hour in the water park and then headed back to the room (Jilli and I were both having stamina issues). Jilli and I then curled up on the couch and watched TV and Brent went and got us dinner. We spent the rest of the night just hanging out in the hotel room. I was still doing nebs every 4 hours. Jilli really struggled with falling asleep (time change, not her bed, ect) and it took us until 11:45 to get her to sleep (it was not a quiet protest either, a little girl lost her iPad all of Monday for her choices Sunday night). In the morning we got up and went to the restaurant for breakfast. We then headed to the pool however this time we only did one lap in the lazy river before I was done and Jilli did not last too long in the kids area before she was done so we were out of the water park in less then a half hour. We headed back to the room and packed up our stuff and came home. Not the most fun or exciting night away but Jilli had fun and that is all that matters.
Yesterday she had therapy and I was grateful that Brent had the day off because he got to do therapy with her while I sat. I am normally a really hands on parent so its hard for me to just sit and watch. Last night we had Jaime and Jason over. Jaime and I take turns on who makes dinner and who makes dessert and while I had found some fun things on pinterest to make for dinner, I was just not feeling up to it so we ordered pizza, I am so thankful for friends who love me enough to understand and just go with the flow. I was still doing nebs about every 4 hours yesterday. Yesterday I also called my OB to let them know what happened. They told me to take the predinsone and nebs because breathing is important and they were not happy that the ER did not look into my high blood pressure more. I am seeing my family dr on Thursday and the OB wants him to check my blood pressure out as I have never had high blood pressure in my life. 
Today is a low key day here! Still doing nebs but able to space them out a little bit more. We have spent the day doing sitting activities and watching TV. I have been struggling with eating since Friday night so I am trying to get some calories in but I just feel so full all the time, which is strange for me on prednisone because normally on that I am starving.
I am slowly feeling better. I think I would be bouncing back faster if they had been more aggressive with treatment in the hospital but there is nothing I can do about that now. I am glad Jilli was still able to enjoy the water park even though I had to sit on the sidelines. Life is about rolling with the punches and finding the good in things. I'll be talking with my dr on Thursday about there needing to be a plan in my chart for what needs to happen when I go to the ER with an allergic reaction so hopefully I don't have to repeat that awful experience again. Brent was off yesterday so he was able to help me out and do therapy which was nice. He was also able to be a part of her goal setting for therapy which is normally something I do so it was good for him to take part in that. While we have several things planned for the rest of the week, I am hoping for it to be a lot calmer!

Friday morning cuddles

 

Chilling on Sunday

After we were in the water park for the first time. She wore this same swimming suit when we went to Timber Ridge the first time in May 2013!

This was the easiest place to have her sleep... or fight sleep

Monday morning after swimming

While Brent packed up our stuff to head home she laid on the couch, even a half hour in the pool just takes a lot out of her some days. She was kind of a hot mess for PT because she did not have a lot of energy.

               

A little about me

Brent and I were talking the other night about how the past month has felt like one of the longest months we had in a long time (stupid February being long this year, lol).

I will be honest, I did not think them coming up with a possible diagnosis would hit me as hard as it has. This past month has been rough emotionally for me. I feel like it should not have hit me as hard as it did because it is something we have been trying to figure out for 3 years and something I so desperately want to know, but its still not easy. I feel like while everyone around us is excited that it looks like we finally figured it out, here I am sitting excited and anxious and scared. I feel like everyone else thinks that I should be processing through this faster then I am, even though no one has said that. See while we have known for three years that something is going on with our kid, we have yet to have a big diagnosis. Sure there have been little things that have felt like punches to the gut along the way, when she was 2 months old and I heard doctors in the hallway talking about her and label her "failure to thrive" I just wanted to cry. When they looked at me and told me to start thinking about the type of wheelchair that would work best my heart sank a little. Last week when the doctor told me that she would likely be going in for a surgical test every year (still the hardest thing is giving her to surgeons and watching her go through those doors, it rips my heart out, even when it is routine) it made my heart hurt a little. But it has been a lot of little things to work through, and honestly there have been times were there has been so much going on that our process time is so short because we need to jump in and do the next thing. Sometimes the goal is just to keep going through the day and in those times you are not processing it all, you just do what you have to do. This past month I have had to stop and process. I am having to work through a diagnosis, but still keep myself guarded in case genetics comes back and disagrees. I thought that three years of going through the "little" punches would make the big one easier, and to some degree it has, and in others it has not.
And being pregnant does not help emotions at all (I am trying hard not to cry today as I lost the ring Brent got me last year for Christmas, not my wedding ring, but still meant a ton to me, looked at my hand at the zoo yesterday and it was gone, remember having Sunday night, no clue when it fell off) I will be honest, if you ask me how this pregnancy is going I will probably tell you fine. I will also most likely be saying fine at the same time I feel like crap. Pregnancy is not easy for me. I am not that glowing, feel great pregnant woman... every part of my body hurts, most foods are absolutely repulsive to me, I am still getting up in the night trying not to puke, I am dizzy frequently, I have zero energy, my lungs hurt, I have not had a full night sleep since.... I honestly don't know when. But really who wants to hear all of that when they ask a pregnant lady how they are? Plus, I just feel like I am whining when I do let it out. I don't like to make excuses in life, I just do what I need to do, and sometimes that kicks my butt. This is my last pregnancy, and yes I will miss not feeling the kicks inside of me, but the rest of this I will not miss. And yes, I feel bad that I don't enjoy pregnancy more.
But there is a part of this all that I have not shared with many people... and that is that when the doctor looked at me and told me he believes he knows what is going on with Jillian, he also said he believes I have a version of it too. To most people that will not make any sense at all, however if you have known me for a long time, or know my odd health stuff it will. It makes a lot of sense. It ties together my daily joint pain, my random times my lungs stop working with no trigger (I was almost intubated in high school because after 2 hours of neb treatments my lungs were not functioning), it explains my GI issues, my heart murmur, why I have arthritis in my joints already, why I have had a lot of odd injuries (I broke my wrist once opening a screen door...), my low muscle tone in my core, why when I stand still for more then a minute or two I feel like I am going to pass out or vomit, why my pregnancies are so physically rough on me and why Jillian's delivery was the way it was,  why I get tired so fast doing simple things, my odd food allergies with odd reactions, why for the life of me I can't run for more then 30 seconds (I have tried couch to 5K multiple times, my body gives out after 30 seconds of running) but most people don't know these things about me... frankly because they are my normal, and I really don't feel like complaining all the time. No one wants to listen to someone whine. I just live my life and adapt where I have to. I gave up my dream of running a RunDisney race a while ago because I know my body can't do it, but I try not to focus on the things I can't do because that is just depressing. My "this" is less extreme then Jillian's, "this" however is a continuum, where some people are effected more then others. I have had doctors tell me in the past that I have a lot of really odd health stuff for none of it to be connected but until now, until putting Jilli and my pieces together, it was hard for them to see the connections. So in the last month I am not only coming to term with Jillian's diagnosis... I am also coming to terms with my own. For both of us it does not change a ton in our day to day lives, it is just managing all of the parts, there is no treatment for the overarching and things may continue to degrade for the both of us, but at no known rate.
As I was sitting in church on Sunday listening to the sermon, I was reminded of a question that I have had a lot lately, "why are we getting the diagnosis now?" This has been a three year journey (ok 26 year if you add my part to all of this), why now? Trust me, its not that I don't want to know now, thats not it at all, its just I know God has a purposeful timing for everything, why did He choose now. I look at how it is finally now that all the pieces are fitting together. We needed that odd test result, and that life event, and that sickness... everything had to come together. If we had seen this same doctor 6 months earlier I don't think he would have come up with the same thing, because enough of the pieces were not clear at that point to put it together. Its one of those times in life where you look back and see how a ton of things that you have gone through have led to what is going on now and you understand that you had to go through those things to end up here. Would we have done some things differently if we had known sooner, would it have changed things that we needed to walk through? I'm not a person who believes in a life of chance.
So if you have interacted with me in the past month and I have been short and distant, I'm sorry. I know that I have not been the warmest person lately. I know from the outside I have not let most of this on lately. I know it is easier to understand we are going through a rough time when we are in the hospital or having testing done, that the past month has looked from the outside like our same old, same old, but to us it has felt far from that. I also feel bad that I have not been super supportive of others lately, cause I know everyone has stuff going on in their lives that is effecting them and I hate when I realize that I have been consumed with my life and have forgotten to help others as much as possible.  
Thank you to those people who have loved on us. I got a calendar invite last night from my mom for pedicures on Saturday cause she knew I just need to do something to destress a little bit right now. Thank you to friends and family who have text, emailed, called to see how we are doing. I can not explain how much your kind words have meant. Thank you for people who continually pray for us.
In other diagnosis journey news, I called yesterday to central scheduling to schedule Jillian's audiology appointment. Nuero had said if audiology had not called us in a couple of weeks to call them and since I had not heard from them that I what I did. Jillian has been complaining a lot lately that things are too loud so it is most definitely time to get her ears checked again (although I struggled with motivation to call because audiology has been very frustrating for us in the past). When I called central scheduling they asked the referring doctor and I told them Jillian's neuro, they said that he can not be the referring doctor because he no longer works there... well that was news to me (we just saw him in February). We got her audiology appointment scheduled with someone we have not seen before so I am hoping for a good experience and they can help us figure out what is going on. The neuro nurse called yesterday and said she had gotten a message from central scheduling that we had found out about the doctor leaving and to call us. She explained the situation of him leaving (he is actually going to go help refugees which is rather cool) and apologized that none of the orders that had been placed at our visit had been followed through on, apparently he had put in the orders but forgot to digitally sign them so they had someone else look at Jillian's file yesterday and sign the orders so we could have them done. The other thing that we were waiting for was the referral to the neuro muscular clinic. I brought up the possible diagnosis with her and what all is going on with that. She then spoke to the neuro muscular nurse and they decided that since it will probably still be several months before we get into the genetics clinic for "this" that they still want us to go to the neuro muscular clinic. They said the neuro muscular clinic is currently booking in June and that someone will call me soon with our appointment time... looks like June is going to be rather busy here!   

I LOVE this shirt! It says "Absolutely perfect, that's what my daddy says"

She is such a ham sometimes!

Library time. We love going to preschool story time at the library!

She got a Rapunzel Barbie the the mail this weekend from Aunt Sandi! She was SO excited!

Doing school work. She LOVES to do school time. I cut out these letters and she sorted them. She was so proud of herself

We went to Ikea on Saturday... this was Jillian's feeling about Ikea... she found it to be too loud

She looks so grown up! I love her little pants! She loved the mouse on her shirt and kept singing "hickery dickery dock!"

We got this 32 piece puzzle for Jillian on Saturday... she put it together all by herself! She is loving doing puzzles!

She was trying to convince me to let her sleep in her tent... it did not work, but she was cute making her case!

We went to the zoo yesterday! It was beautiful out and we had fun spending time together. I am all for nicer weather!

Sleep has been really hard for her lately. It has been taking her several hours of sitting in her bed to fall asleep and she is waking up too early and little miss rarely naps. Monday night she fell asleep around 10:30 and got up at 6. She has also gotten up a lot during the night. She has been really good about staying in her bed until we tell her she can get out. Last night her body was just so tired she cuddled with me and slept... that does not happen often anymore and I loved every second of it.