Normal?

I have been accused a time or two (ok a few people have said this more then once) that I am overprotective of Jillian. At first I wanted to prove them wrong... show them... but as the years have gone on and I have become more comfortable as a mom and feel less like I have to prove myself to everyone (not perfect at this, I am a people pleaser at my core, but working on it) I actually am rather ok with being called over protective at this point.

I feel like if you were in my shoes you might do some of the same things, and maybe if I was in your shoes I would say that same things about me. But thats the thing... we are each in our own shoes and have lived our lives in different perspectives. I have seen my baby turn blue, handed her over to surgeons, held her down for tests that suck, and watched her be poked and prodded. I have had to make life choices for my child, and all of that changes you. It changes how you look at the world. There is no point to life events if they don't mold and shape you (you still have to be the one to chose its impact on your day to day life).

Sometimes I worry about being overprotective, and then we have weeks like recent and I realize again that I am doing my best to make the best choices for her. Life is taking a lot out of her right now. She tried hard to be go go go around others but Brent and I are the ones with her when everyone else leaves.

My 3 year old has laid on the living room floor twice this week sobbing that her muscles don't work they way she wants and that they were too tired to stand. It has broken my heart into pieces both times. A 3 year old normally does not have to think about their muscles and if they work or not... Jilli does.

I see how little things take so much out of her. She has been begging to go to a park and play and yesterday was finally nice. Brent has had a meeting for work every night this week from 5:30-7, so after he got done with his meeting we headed to the park. We played for about 20min. Part of that time was spent with Jilli sitting on Brent's lap on the swing. When we got home she was completely exhausted.

Life with Jilli is a balancing act. I want her to be able to experience the world and do the things she wants but I also see how it effects her body. For her when she does too much it is not that she is just a little tired, it is that her stomach motility slows down causing her to reflux more, her muscles get tired making it harder for her to breathe, her muscles in her arms and legs stop working or become very painful, and she becomes overall lethargic. Last week she told me one morning that she needed a neb, her lungs hurt. Her pulse ox was fine but she was right, she needed a neb. With her you can always tell how much she needed it by how much of the side effects she ends up with. If she is jittery and bouncing off the walls after she can go longer between nebs, but if she takes a neb and then hangs out on the couch for hours, she really needed it (no this is not the only way we determine if she needs nebs but it goes into it). Yesterday she told me I needed to take her pulse ox. She was right, on oxygen it was hanging out in the mid 80s (taken in multiple spots with an accurate hate rate). She sat for a while and we retested and then it was in the 90s. She was right, her body was off and not working well at breathing. I don't want her attached to the pulse ox but it is a good tool to help us gauge how she is doing when we need it.

We let her try things. You can tell by the bruises on her legs that she falls frequently, but we always encourage her to get up and try it again. Right now she is working on learning how to dress herself. We try to help her learn independence in ways that are appropriate for her.

I am on a special needs Disney group and this morning a question was asked about how you make the choice of what vacations things you do with your medically complex child. Everyone talked about how much planning goes into it, and how everything might fall apart but it is worth it to at least try. We try and do different things with Jilli, sometimes it works out, sometimes we have to cancel last minute, and sometimes it effects her a lot after and we know that for the next time that was too much.

Part of it too for Jilli is that it depends on the day how much she can do. Some days a trip to Target is too much for her and other days we can go play at the park. It depends how her body is doing that day and 3 years into it I am better at gauging and don't get as upset when plans have to change, but I get it wrong sometimes too. This morning has mainly been spent cuddling and her telling me her body is just so tired. Right now she is sitting next to me looking at books. I'm starting to wonder more if it is time to look into getting her a wheelchair for when we go to parks and such.

Jillian's toe walking is also happening a lot more. She has rolled her ankles a few times lately. It is really starting to worry me more. Toe walking should not be getting worse as she gets older. Her PT thinks it might be due to how low her muscle tone in her core is.

So if you think I am being over protective... maybe sometimes I am, but you know what, I do it out of the love for my child. I have to fight for her health and well being and sometimes others don't agree, but you know what, Brent and I do, and at the end of the day we are just doing all we can do give Jillian as many opportunists in life as possible and sometimes that means saying no to something so she is able to do something else.  

Doing a Neb, hanging out in her Children's Hospital of Wisconsin shirt. She is so proud to wear that shirt!

Chilling!

Saturday morning I woke up and my back was out... like cry getting out of bed out. We had people over that day to help us put our new fence up (which is about 95% of the way done... yeah!) Jilli and my mom helped out by washing all of the dishes!

Just laying on the couch... this is a common sight right now

Little miss ready for church on Sunday. She is my fashionista!

Jilli and Brent curled up watching the Magic School Bus the other night. I went to take a shower and came back down and they were pretending that Dupos were light sabers!

Jilli and her baby doll (she named it Emerson) She has been really into pretend playing that she is driving a car or an airplane. She packs her little bag and her baby. It is really cute!

I stopped at work yesterday and Jillian's teacher brought me this. They made it a couple of weeks ago when I subbed for 4K. It was really sweet that her teacher made the time to help Jilli make me a mother's day gift even though she is not there all the time like the other kids. Jilli had a spot all picked out when we got home of where she wanted it.

Brent and Jilli swinging at the park yesterday in Lake Geneva

Slide time! Those pebbles were really hard for her to walk on but she tried hard

This is how she has looked most of the day today

Getting closer! I had a dr appointment yesterday. I have not gained any weight in over a month but my stomach has grown. They are doing another ultrasound in a couple of weeks and hopefully soon they will schedule the c section! My mom helped me work on getting stuff ready for the baby this weekend!