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!

Using her dot markers to work on letters

She told Brent she just needed to rest on him for a while so he gave her a back rub. She loves her daddy!

She decided to try on my shoes... this ended in her needing an ice pack but she thought it was so funny to try my shoes on!

Wiped out!

Playing outside on Sunday. She told us she was doing work on her car

She got to hold Emerson while he was sleeping

We put the two of them next to each other to see the height difference... Emerson was not ammused!

Jilli laying on the couch yesterday, not asleep just laying there.

The old fencing on the ground. We have to pull the old posts out too

New fencing ready to go up!

Relaxing weekend

Ah, what a calm weekend surrounded by people you love can do for your soul!

Last week was one of those go, go, go weeks around here where Brent and I were passing each other waving hi and goodbye. Some weeks are just like that. It defiantly wore Jillian out and by Friday night she fell asleep in my arms.

Saturday morning started off slow. We let Jilli sleep in and Brent ran to Home Depot and I worked on laundry. Jilli woke up to an Asian beetle in her bed and proceeded to give it its leaving instructions. Jilli and I worked on cleaning the living room as it was a disaster zone of toys and Brent worked on some yard work. She did a great job helping to clean up. We ran into Lake Geneva to get lunch and go grocery shopping. While at Walmart Jilli peed right out of her diaper and onto the floor and my foot! A kind man offered me his cart as I was running to the bathroom with her, feeding pump, oxygen and diaper bag... it was sweet. We came home and started prepping stuff for dinner and then my parents came. Jilli was all excited to play outside with grandma and bumpa. My dad and Brent worked on picking sticks up in our yard as you could see more sticks then grass. They looked at our trees too and figured out that two died over the winter and we are going to need to have someone come in and take them down (both are right next to the house and large). We came inside and had dinner and then the boys went out and burned sticks.
Sunday morning we got up early and headed to church in Jefferson. My best friend Jaime is the worship leader there and they were dedicating their little boy. It was awesome to be part of such a special event for a little boy that we have prayed for many years. Jaime and I met in collage in the Navigators (Christian collage group) and have been friends since. During our years at Whitewater she led worship, Brent ran sound and I ran slides so ended up spending a lot of time together doing different worship events and weekly Nav nights. Jaime and I were talking yesterday about how much has changed in our lives since meeting as collage sophomores. After church Jaime and I headed back to their house to get stuff ready for family and friends to come over for lunch. Brent took Jilli to a park to play for a little bit. A while later Brent brought Jilli over so he could eat lunch and Jilli and I played in the back yard. Jilli is allergic to cats and Jaime and Jason have cats so Jilli can't go in their house but it was a beautiful day outside so Jilli and I hung out in the back yard and different people came out to play. I love how Jaime and Jason have never made us feel bad about Jillian's allergies or pressured us to try to bring her by the cats anyhow, instead 99.9% of the time they come to us or we meet someplace in the middle. Jilli loved spending time outside playing. By the end though you could tell she was 100% exhausted! She kept laying on the handlebars of her trike. She did not even make it half way to Whitewater before she was asleep. She worries me in the car sleeping though when she is that tired because her head just flops around. She slept the whole way home and then once we got home she laid on the couch for another 45min.
Brent and I were talking about what would be good for dinner and we both decided that Adrian's in Burlington sounded amazing. I limit my dairy intake because of a milk protein allergy so if I am going to have ice cream it is going to be good ice cream. We called my parents to see if they wanted to join (my dad had been talking the night before about wanting Adrian's) and we decided to meet for Italian food first. Then we went to the park for a little bit, but Jilli's muscles were tired from the day so we mainly just pushed her on the swing and she played with the steering wheel for a while. We then walked over to a very busy Adrian's. After ice cream it was time to come home and go to bed.
Today I feel like I have been recharged. It was great spending a weekend relaxing and celebrating with people that mean so much to me. Today I have an OB appointment and then Jilli has therapy, hopefully this weekend did not wear her out too much... its 9am and she is still sleeping :)

Jilli at Therapy on Monday. She was having a rough time but she loved the swing

She is just too cool!

We had zoo class on Wednesday. It was all about Elephants!

Jilli the elephant!

her tail was almost as big as her :)

We got to go in the elephant cage (while the elephants were outside) and the zoo keeper talked to us about what they feed the elephant. I was just glad this part lasted less then 5min because it is stinky in there!

Then we went outside and the zoo keeper talked to us about the elephants and gave them treats

the one elephant was trying to figure out how she could get more treats

Jilli decided she needed to vacuum the other night... why can't these toy vacuums really vacuum?

She decided after the bug was in her bed that the sheets needed to come off and get washed.

She decided she needed to "clean" her puzzle before she put it away (we got a couple new floor puzzles this week at Learning Express in Brookfield... they are buy one get one free right now!)

I walked into the kitchen Saturday morning and was reminded of how thankful I am for my hubby. We were both lamenting the other day about how I keep the livingroom clean and with a 3 year old it feels like that is a multiple time a day task and he keeps all of her medical supplies clean and with the amount of stuff that needs to be washed and reused there are always Jillian dishes to be done and I am grateful that he takes care of them.

She was being goofy!

Working on those legs! We are working on getting her to do full peddles instead of half

She put her jammies on all by herself! She also decided she needed a crown to go with it!

All dressed up for church!

Playing with her bike at Jaime and Jason's

Doing a puzzle! Shortly after this pic her extention fell out of her tube causing green bile to flow out onto her clothes. I am very grateful that her tube is getting changed out this week because the extentions are not staying in and the valve to keep stuff from flowing out has broken so this has caused a big mess multiple times this week!

Jaime and I and our kiddos!

Jilli, Brent and Jason playing. Jillian loves both of those men so much and looks up to them. My parents always told me that it takes a village to raise a child and I am grateful for the village that was around to help shape me into me and I am grateful for the village that has surrounded Jillian.

At the park!

Tired legs= a ride on bumpa!

the line at Adrian's! This was shorter then it had been!

Deep thoughts

I feel like the past couple of days I have spent a lot of time thinking (this post might be a lot of rambling and thoughts...)

While I once spent free time reading articles on education my focus has now shifted and most articles I read are about special needs. You focus and spend your time and energy reading about things that are important to you. I have read a few different articles this week that have made my brain spin and ponder.

One I read was about when you live a life that is other people's greatest fear. Being pregnant and in online mom groups this one feels so real to me right now. I see women who are beyond scared of living my life. I remember having a "come to Jesus" moment when I was pregnant with Jillian about special needs. I was driving and the thoughts just kept going through my mind about what if Jillian had special needs. We tried for 18 months to get pregnant and at that point my heart just longed to be a mom so badly. I remember praying and telling God that I was laying it in His hands because me worrying about it was not going to change anything. I remember feeling at such peace about it after that point (remember we had NO prenatal testing with Jillian that gave any indication that something was up). I would still worry about it for passing moments but I kept giving it back to God. Looking back I see how God was preparing my heart for what was to come. He knew I needed to work on giving this to Him before I even knew what was going on, and while there have been many times over the last 3 years that I have taken the worry back and tried to carry it myself, I am thankful that God started working on my heart then because it gave me a foundation.
But it still hurts and stings a little bit when I see people saying things like "as long as the baby is healthy, that is all that matters," cause I can tell you, its not all that matters. You will still love your kid even if they are not healthy. They are still your baby. Honestly this time around Brent and I keep joking about what if we have a "typical" child, are we going to know what to do. We had some friends over a couple of months ago and their kid asked for a snack and Brent looked at the dad and asked what in the world an appropriate snack for this child would be, cause if you ask Jillian what her snack is she will tell you about her afternoon oral med that she gets, that is what she is asking for when she asks for a snack. Special needs parenting is our normal and sometimes we forget about things that other kids require that ours does not. When something is your life you live it, and sometimes you forget about the fact that other people do different things. I get why looking at our life could look intimidating to some, but honestly their are things about other peoples lives that look intimidating to me. You do what you have to do. We are blessed that there have been so many situations in our lives pre Jillian that prepared us for different things in our lives now (not to say that we came in all prepared, or heck that we are even prepared now) but God brought us through different things to give us skills that would help us. I am really at peace about the fact that if Jilli has "this" then there is a 50% chance of having a second child with it. I know that sounds crazy, but if God decides that He wants us to take care of a second child with "this" that is ok, He will be with us and will help us. Yes I am sure it will feel overwhelming at times, but no matter what, there will be times life feels overwhelming. God has a plan for this kiddo and I feel privileged that He is letting me be their mom not matter the circumstances.
Our society is very open with the fact that special needs parenting is not something you want to do. Sometime I feel like the special needs community is a little to blame for that, because I see far too many things about how special needs parenting is that hardest thing in life... newsflash... I don't know where anyone gets the thought that anyone else's life is easy, EVERYONE has struggles, hurts and pains. Yours are different then mine, but when we play the "this is the hardest thing in the world card" we build walls the divide us from people we are looking for support and acceptance from and it invalidates other people's lives and feelings. I full understand how overwhelming special needs parenting can feel and I understand how hard it is to explain something to someone and have them get the weight of it if they have never experienced it. I was talking with two amazing special needs mommas this week about some situations going on in their lives that have to do with their kiddos needs and I remember thinking how my reaction to what they were saying is different because I have been there before and can relate in a way that 4 years ago I would not have been able to, but I also think that as humans we have a certain level of empathy that we should all be able to extend to each other, if you can relate to the situation or not. Yes I can relate to these mommas differently because I am in the same situation but that does not make the way that others without kids with special needs relate to me invalid, just different, and sometimes different is a really good thing!
I was reading an another article this week about types of friends families with special needs need in their lives. I smiled as I thought of different people that are involved in our lives and the way that they love us. Honestly for almost everyone I thought of, the way they treat us and love us is no different since having Jillian. It works in both directions, people who treated me like crap before Jillian, still treat me like crap now, her needs did not change that. The people who really care about me, really care about me. Yes some of the people who were more of acquaintances before Jillian have left, and at times that has really hurt, but people are always going to come in and out of your life, it is part of how life works. I am thankful for the people who love and care about me. Some are close and I talk to them frequently, some are people that I don't get to see or talk to often but I still know they pray for us and wish us the best.
I really debated posting that article on my facebook page though. I did because I wanted to say thank you to the people in our lives that are amazing, but there was a part of me that worried about giving the online everything is perfect image. There have been times where I see people getting something or doing something and I feel jealous of why don't I get that or why does someone not do that for me, spend some time online and I am sure at some point you will feel that way too, so I was nervous of making it look like we have amazing perfect relationships with everyone in our lives and that we always feel 110% of the support we need... lets be honest, no one has that. We are humans loving other humans... that is messy, and none of us can fill anyone up 100%. There are always going to be times in your life that you feel let down by other people. One of the situations that sticks out to me is when I was younger and would have school events and such my parents were never the ones to bring flowers or balloons (pre really bad allergy) or things like that and I would see other kids parents do that and feel bummed and left out but had a conversation with someone once who's parents did bring showy flashy things to those events and hated it... because it was fake and a show for other people. Their home life rather sucked but in public it was a big show that everything was perfect, so to them they hated the flowers and balloons that I was throwing a pitty party for myself about. It made me stop and think and reflect. Would I rather have my parents love and respect and encouragement all the time and know they supported me, or a 60 second show in public? Honestly I would rather have the love and support without the objects to show for it but the stability that comes from love, respect and encouragement is so much more rewarding. My parents showed me they love me in so many other ways, but in the moment you get caught up about what someone else is getting. Sometimes I really struggle about writing about highs and lows. Sometime I feel like it is just easier to list the facts. I feel like if I talk about how I feel about something that is hard for me that I will sound like I am whining or ungrateful or that I don't have joy. I worry that if I only write about what makes me happy then I am painting a fake picture. This is one of those things I ponder from time to time, about how to write the balance. There are times when I write more about happy things, and it does not mean that everything is rainbows and sunshine but that I am working hard to focus on the positive, but then someone comments how my life looks perfect and then I feel bad for giving off that impression, not because I don't love my life but because painting a picture that your life is perfect does nothing to help others, it just makes others feel bad and no one wants to be around someone who pretends to have it all together. It also does not admit that sometimes you need help. But at the same token I don't want the pendulum to swing the other way and only portray negative because there are so many amazing things in our lives. I don't want to live with a rain cloud above my head because then I miss out on the great things around me and the things that God is trying to teach me. Yup there will be times I feel overwhelmed or exhausted and my writing will reflect that, but it is about balance. I think back to the verse about being happy with others when they are happy and morn with others when they morn and it reminds we that sometimes I need to apply that verse to how I view my own emotions. You hear the saying that life is like a roller coaster and to some extent that is true but in other ways it dismisses that fact that sometimes you are going through highs and lows at the exact same time... that is life! 

So there is where my brain has been lately.

The strength does not come from me... it comes from Him and helped by the love and support of others

Thankful

I have not been feeling great the last couple of days... I think it is the crazy Wisconsin spring we are having... my allergies are just not liking it. I have spent more time just hanging out the past few days. In fact Jilli and I have not left the house since Monday. But this has given me time to reflect on some things in my life that I am really thankful for.

On Tuesday I sent Jillian's ped a message asking her opinion for what we should do about vaccinations for the baby.  Jillian has really bad, odd reactions to vaccines and has only gotten some of them because we had to stop them for medical reasons (like she would start struggling to breath and we would have to rush her to the ER). From the start we had Jillian on a modified vaccine schedule because I have reactions to vaccines (I am allergic to eggs and latex and almost all vaccines are made in those) so I wanted to be careful with Jillian and vaccines. I was really struggling with what to do with this baby and vaccines. I am not against vaccines, I just wanted to be careful since there are now two of us that react to them. Our ped called me yesterday and we were able to have a really good conversation about what the best plan for vaccines for this little one is (we are not going to start them until after she is 2mo old and then we are only going to do 2 at a time spread a month apart). I am so grateful for our ped! I am thankful that she would take time out of her busy day to help me figure out what is best for my kid who is not even born yet. She has been so helpful with Jillian and all of her stuff. She has always supported our choices and helped to refer us to the right people. She is a great doctor and I am really thankful for her.

I am also really thankful for my hubby! I gotta take a second to brag! He has been AMAZING this pregnancy. I am so thankful for how hard he works to provide a home for us. He has not given me any crap about lack of real meals around here most nights and if I am not feeling great he takes care of the cooking. I am so grateful for him!

Today I am thankful for a cuddly little girl. Yesterday she was very much 3 and pushing her limits. Monday she was rather sassy (she was yelling at people for looking at her at therapy) but thankfully today has been much better and she is making a lot better choices. We played a board game together, played with her sticker book and did a 60 piece puzzle together. Now as I am typing this she is curled up next to me playing Sesame Street on her iPad. She is at that age where she is trying to figure out where limits are, and that is just a part of development, but after a few days of her really pushing it is nice to have a calm day where she is acting more like herself.

I am also thankful for our pharmacy. When you have a kid on as many meds as Jilli is you get rather friendly with the pharmacy staff. They really care about my kid! There was a couple of issues yesterday with her meds and they worked really hard to fix it for us and I am really grateful. We had been with a different pharmacy when Jillian was younger and when there was problems they would just tell me it was mine to deal with, but our current pharmacy does all that they can to fix it for me and that means a ton to me.

I am also thankful for our med supply company today. For some reason the past couple of months I have had a hard time remembering to call them to order Jillian's tube feeding supplies. I need to call them on the first Tuesday of the month for them to deliver with her oxygen. Her oxygen is set up to weekly automatic delivery every Thursday. I set a reminder on my phone to call this week and then silenced it and forgot to call until last night at 6pm! I figured that would mean that they would not be able to deliver feeding tube supplies until Friday, meaning we would have to miss library time and that I would have to sit at home two days in a row waiting on med supply, but I knew it was my fault. On many occasions med supply has made me want to pull my hair out (forget to deliver oxygen, bring smashed cans of formula, bring empty oxygen tanks, drop off broken pumps, ect) but this time they really came through. I was shocked when the guy came to deliver oxygen today and he had all of her feeding tube supplies with him. I am so grateful!

Even when I'm not feeling great, there is still a lot to be thankful for!

Jilli picking out tubes to make Tubie Friends

Jilli wanted to help put the tube in the Tubie Friend! She loves helping to make them. She was so excited that one of the ones we made today needed oxygen like her

Jilli had to get her Tubie Friend to help make Tubie Friends for other kids. We also talked about the differences between G tubes and GJ tubes!

On Tuesday Jilli was SO excited to go with us to vote. You could tell she was excited because she was talking so loudly in the line... I kind of felt bad, but at the same time I think she was the most excited person in the room to be there voting. She was also so excited that they gave her a voting sticker.

Family time

The due date is getting closer...

We spent the weekend working on some projects around the house. Nothing major, just little different things that need to get done. My hubby is rather amazing and jumps right in on doing stuff like that. He deep cleaned our bath tub this weekend because he knows its hard for me to do right now and we have hard water so it gets yucky. My goal is to get everyone's clothing organized. This is a real struggle in our house. I hate folding and putting away laundry. Partially because I have yet to figure out a way of folding laundry that does not bother my back, and partially because laundry just has a magic way of multiplying all by its self... but laundry is just a part of life so I am working on figuring out ways of making it less overwhelming. So we both worked on different little projects. We also noticed Sunday morning that the winds on Saturday damaged our fence and we are probably going to need to rip out our fence and put in a new one before the baby gets here. This is not something we were planning on doing right now, but it looks like we have little option. Anyone good at installing a new fence, lol! Oh the fun of owning a home!

We also made a point to spend time together as a family this weekend. It wont be just the three of us for too much longer so we made extra cuddle time with Jilli and played together as a family. Brent and I both really like playing Ticket to Ride. I am not a board game person, honestly I get board by most board games, lol, but I love Ticket to Ride. Brent got the Netherlands version for Christmas and we had yet to play it. Jillian also loves Ticket to Ride. She likes to play on my phone... she just loves collecting the rainbow cards, but when we play the board version she likes to sit in her high chair and she give us a train on her turn. She thinks she is so cool!

While sleep was easy for Jilli Friday night into Saturday... Saturday and Sunday nights were different stories. Saturday night she fell asleep on Brent for a short time but then woke up and struggled for a few hours to get back to sleep. Last night she did not fall asleep until after 10:30. Oh Jilli and sleep...

Jilli is also very much in the "why" stage! She is a very curious kid and she wants to know how everything works and why.

Brent and Jilli cuddling

Not a big bump picture person, but there is most def a bump! Thank you to the person at church yesterday who stopped to tell me I look cute! Most of the comments I have gotten lately have been about how huge I look (yes people have actually used the word huge) or how long I have left to go so it really made me smile when she stopped to tell me I look cute! Sometimes it is the little things that can do a lot for a person!

Jillian and her trains

Netherlands Ticket to Ride

Jilli working on doing more dot letters. She is LOVING doing these! I need to spend some time hunting the internet for more

They are great for motor planning... plus she was rather crabby today (her PT almost put her in time out and she would have deserved it) but doing dots really calmed her down