Brown and Pink Polka Dots : Run, Run, Run!

I am laughing a little right now because I am thinking back to a few months ago where I said that I wanted a low key April and May... I am not sure what happened to that! Our April start off looking low key but managed to fill up with a lot of things and May is already looking crazy!

Part of my thinking to wanting a low key April and May was because the third trimester with Jilli was very painful because I was having very frequent contractions (like every 2min lasting 30+ sec each and this would happen for HOURS). It was physically exhausting and emotionally hard because I was in a lot of pain and it got to the point where no one knew when I would start dilating so I was very much on edge that I could have a baby at any time. Thankfully this time contractions have not been nearly as bad (I am taking lots of magnesium to help). I have come to terms though with the fact that I am never going to be the glowing, happy pregnant woman... that is just not me and that is ok. My body pulls weird pregnancy symptoms (many of which confuse doctors) and I am just overall uncomfortable and exhausted, but it is completely worth it for this little one.

Last week I had an OB appointment and we scheduled the rest of my appointments til the end. Still waiting to schedule the c-section but its getting closer!

Last week Jilli also helped me do a Tubie Friend. She loves working on Tubie Friends and its always interesting hand sewing with a 3 year old around!

We also got to see pulmonology last week. We are really leaving everything the same. Oxygen is such a huge help to Jillian. We will bump down her one inhaler again for the summer but the is normal. I brought up to them that we didn't have a good pulse ox at home and they did not know that. It seams like med supply tried to get approval from our old insurance for one and they denied it (med supply did not communicate this with anyone), but they never asked if her state insurance would pay. We also have different insurance now from when she went on oxygen. Pulmonology sent a request to med supply to try to resubmit for a pulse ox and insurance instantly said yes. Med supply called Friday and asked to send a respiratory therapist over Friday night. He came over and showed us how to work the pulse ox. He asked why we were getting a pulse ox after a year of oxygen use and we explained how med supply had dropped the ball. He apologized to us. Sometimes I just don't understand how a company that supplies life dependent things can mess up so often. Like we had Jillian's pulmonology appointment Thursday morning and I rushed home so I would be there by 1 (oxygen is to come between 1-4) and pulled in my driveway at 12:38 and there was oxygen just sitting on my front porch! No phone call, nothing. I think just leaving oxygen laying places is dumb! I know I live in an area that not many people would notice oxygen sitting on my porch however I still don't think it is the best plan, plus I was home before it was suppose to be delivered! I really wanted Penara on my way home but didn't stop so I would be home in time. I just don't understand. The one good thing was that we got a new oxygen bag out of it all, our old one had issues, so I am happy for a new one and now we have a pulse ox at home to check her when she seams off which will help us to figure out when to bring her to the ER. Even when things are frustrating they work out.

Dan came over and spent last Friday night here so he could work on his truck. Saturday afternoon we headed to Kenosha for dinner with my brother for his birthday and then we headed over to my grandparent's to celebrate my aunt's birthday. Sunday Brent found out the fencing that we were looking at was on sale this week so Brent, Jilli and I went over to Menards and bought the fencing while my parents and brother went over and got my grandfather's trailer and met us at Menards (we don't have a trailer hitch on our car but they do) We could only fit half of the fencing in on the first trip so it took the boys two trips to get it all, thus making the project of getting the fencing take up a lot of the day. Jilli, my mom and I played outside at our house while they worked on that and Jilli showed grandma some of the stuff she is learning in school time. I ordered the Heidi Songs preschool set a few weeks ago and Jilli has loved the videos (she made Dan do them with her Saturday morning) and doing the activities. She is also really into any school work she can do with her Do-a-Dot markers. She is identifying some of her letters and numbers and doing a lot of 4K skills. She loves learning!

Monday night Jaime, Jason and Emerson came over. Last week Jilli was rather sassy to Emerson and was not liking sharing attention. She even told him at one point to go home and when we pointed out that him leaving meant that Jaime and Jason had to leave too, she told Emerson to just drive himself home. This week she was much more in love with him and played peek-a-boo and was talking to him. Its an adjustment for her to not be the center of attention, but that is good since little sister is coming soon!

Tuesday night I presented about autism. I do presentations every few months and April is autism awareness month so I ended up doing two different ones this month. Yesterday during the day Jilli and I went up to Milwaukee to see my cousin in the hospital and spent time with him. I know all too well what sitting in the hospital for days is like so I try to make a point when people that are close to us are in the hospital for a while to go hang out. Sometimes with Jilli's stuff that is not possible (if someone has something contagious we stay far far away) but we try. Wednesday nights we have Bible study. I was whining a while back who I feel disconnected with many of the young families at church and decided that whining does not solve anything, doing something does, so Brent and I joined a family Bible study that works well for us and our needs (ok Jilli's needs, lol). I am working hard on not just whining but doing something about something if it makes me upset, mad, feel left out, ect. It is easier to complain about something then do something but that fixes nothing... I am not great at this, but trying! Trying counts... right?! The world can't read my mind and its not fair to expect the world to because I can't read anyone else's mind. I am also a person who something will bother me, but I am not going to say or do anything about it because I don't want to make other people mad, and while I am not out looking to hurt people, I am learning as I get older that letting people walk on me is not ok either and that it is ok to say I don't like something. I feel like this is one of those things that I am always going to be working on in my life... I am a people pleaser!

Tonight we are going to story time at the library. Jilli loves library story time and once a month they have pajama story time at night so she is able to bring daddy with her. She has been talking about this for a month and is so excited. I am happy it gave me an excuse to change from pajamas into sweat pants this morning and not feel like I have to look nice to go out of the house (we have had something every day for weeks where I have needed to get more dressed then sweat pants and a t-shirt so this is making me really happy today!)

Tuesday night Brent worked on taking the current fence down. We knew it was bad (it was falling over and had rotten wood) but several sections of the fence only needed a light tap and they fell over. I am glad we are taking care of this before it fell on anyone. This weekend is the fence project! We looked at our weekends between now and baby and this is the only one we didn't have something going on, so it made the choice really easy. I am thankful for my hubby for working so hard on projects around here and for my parents, brother and Dan being willing to come over this weekend and help us out. I am not much help putting fencing up right now but am more then happy to cook for them!

I also got the big packet in the mail last week for Jillian's state insurance. Her state insurance helps a lot but all of the forms to fill out for it are no fun at all. It is rather emotionally exhausting because you have to sit there and fill out all of this stuff that your child can not do. I mentally know the things Jillian struggles with however we choose not to dwell on them but filling out this packet hits you in the face with it all. They need to know all of it so they can figure out who qualifies, trust me this is not a just they give it to anyone thing, there are a lot of hoops to jump through, but it helps to pay for some of the things insurance does not, and our after primary insurance, bills each month would be in the thousands without having state as a secondary. I need to just suck it up and finish it in the next couple of days just so it is done and I make sure it is in before the deadline.

Jilli has also been into using new words this week. Her big new one is "issues." When something does not work how she wants it to she tells us that it is having issues. She also told me this morning that her coat touching her iPad is not appropriate! She makes me smile and giggle. We were at Target the other day and she told me she loves spending time with me and I'm the best mamma... melted heart right there! I love spending time with her too. Yesterday when we were at the hospital each time someone walked into the room she told them "hi, this is my momma, she is my best friend!" She was also telling me yesterday all about her friend Caroline and how nice of a friend she is. She is such a sweet little girl.

This week has also been kind of hard for Jilli. All the go, go, go really wears on her. Its hard to explain to people when they see her playing how much playing makes her crash and how much it takes out of her body. It has been really evident this week. Just playing outside on the deck Sunday caused her to need to lay most of the day on Monday. Her pulse ox numbers frankly were crap at therapy on Monday and we had to turn her oxygen up for her to be able to do anything and even with that she took a lot of breaks. I had errands I needed to run after therapy on Monday but instead we came home because she needed to rest. Anytime we have been at home this week she has spent most of her time resting and literally laying on the couch for long amounts of time doing nothing (I had to beg my 3yr old to play with toys...). She has no colds or illnesses right now, its just living life that is hard on her body. She is also toe walking more and turning her right foot out at a 90 degree angle at times when she walks. Its hard to watch your kid not have energy to be a kid. She still amazes me though because through it all she is still happy (a little sassy sometimes, lol) and just takes it all in stride. You can tell it frustrates her when she falls all the time, but she gets back up. Still waiting to hear from the clinic for "this." We ran into our GI dr on our way to pulmonology last week and she said she is going to contact that other clinic to see if she is can speed things up. We also scheduled Jillian's neuromusclar clinic appointment for this summer so I am interested to hear what they have to say too.

So thats kind of what is going on at our house right now. I am sure there are things I have forgotten because it has just been busy here lately, but that is how life is!

Me and my girl!

She is such a ham sometimes!

She loves doing arts and crafts... for being a preschool teacher paint is still not one of my favorite things, somehow it always ends up someplace it should not but she loves it so we paint every once and a while

Jilli loves her books. This picture makes me laugh because there are oxygen and feeding tube lines all over the place and she is just sitting in the midst of it all

My throw back! I had an Alphie robot when I was little and LOVED it! WE were at TJ Maxx and they had the new version on clearance! Jilli loves her Alphie as much as I loved mine, plus it is a great learning toy

I painted Jillian's toe nails last week for the first time ever! It will still be a long time before we paint her finger nails because she still puts her hands in her mouth all the time but she thinks she is hot stuff with her toes painted pink sparkles!