Museum Visit March 2015

Seth and Mikaley were in Kenosha this weekend. Mikaley had never been to the Museum of Science and Industry in Chicago. We have a family membership (I got an AMAZING groupon back in October that made it super cheep) and my parent's have a discount with my dad's work.
We went to first service for church and then headed down o chi town. We tried stopping and Fuddrucker's on our way down but the location we tried to go to is permanently closed. We got down to the museum around noon and played til around 5pm. It was a lot of fun.
Here are lots of pictures: 

Holding her ticket to make her ToyMaker 3000

She LOVED the ticket

Waiting to make our toys

Grandma helped Jilli put it in

Holding her toy. She held onto it for most of the day

Watching a tornado

She was just so excited!

looking at cho-cho

Jilli had fun in the gene area

butterflies landing on her

excited

Uncle seth the astronaut

Looking at the mars rover (all we could think of Big Bang Theory)

Jilli the astronaut

Jilli looked at the astronaut and was SO excited because he had a backpack like her. She was just in love with him because he was like her. It was so cute.

Clown Jilli

Playing the piano with her feet

looking at the castle

Jilli was making funny faces

She loves the bubbles

picking balls up out of water

up the vaccume

She thought this little house was the best

She had some good PT

She was excited she made it to the top

Watching a movie about math in the world

Mirror maze

Playing strings with bumpa

making music not puzzles

There was a body scanner... she was too short

Tornado

What I have learned since becoming a mom of a little girl who is medically complax

I have spent a good amount of time in self reflection the past few days. I was really hurt by several things that someone said to me this week and I left that conversation feeling like my heart had been beaten as this person attached on of the things that we dearest to me, me being a mom. After the sting went away and the reality of talking to some people in my corner in life I remembered that this person's words came from their own hurts and were not truth about me. It got me thinking about what I have learned since I became a mom of a child who is medically complex.

1. I learned who is there for me. When life is not easy people leave. In just normal ebb and flow of live people come into your life and people leave your life. Over the past two years I have really figured out who is in my corner. Who will listen as I rant about doctors, who will try to look up Jillian's stuff online so they know what I am talking about, who is not offended when we change plans last minute because Jilli is ill, who will do all they can to keep Jilli healthy including not coming over if they are sick. I have learned who has my back and who does not. At times this process has been painful but I know I contribute as well. I can't just hang out whenever. I know most of what comes out of my mouth has to do with Jilli. I know I am sleep deprived and that sleep deprived people do not always make the best friends. Trust me I know that I play a huge factor in this, but I am so thankful for the people that have stuck around. I treasure them more then I can express and I really value them. These people are not all ones that are right here all the time, but people from all over that have stuck by us in all of this.

2. I have found my voice. I am a person who runs from conflict. I am a "this is right" kind of person who sees a rule and will follow it because it is the rule, however I have learned to speak up for myself and my child in the last two years. There have been times were I have disagreed with specialists and I am learning when I have to jump through their hoops so they see what I am talking about and when I need to stand up and say no. I was brought up that you respect authority, so I use to always take that as doing what I was told, however I am learning how to respectfully disagree. Yelling at a doctor most likely will not get the best care for Jilli however having a respectful conversation will. I am learning how to let go of my personal dislike for conflict and learning how to have a productive conversation about something we disagree about.

3. I have learned how to do a lot of things I did not know how to do before. I have a degree in special education and I use to work as an in-home autism therapist. I baby sat for a child with a feeding tube when I was a teenager, but it is different when it is your own. I know so much that I did not know before. My knowledge has grown a lot. I can hold high level conversations with doctors. I know what they are talking about. I understand respiratory rate, pulse ox, pulse rate, stoma conditions. I have to get it because I live it and to be the best parent I can for Jillian it is my job to educate myself.

4. I have learned the love that special needs parents have for each other. I have asked other special needs parents odd questions at odd hours and they have lovingly helped me. There is no manual to parenting, there is defiantly no manual to special needs parenting. We got about 12 hours of training before they sent us home with a child that had an NG tube. Trust me in none of that training did they tell you how you were going to dress, bathe, change, ect a child with a tube running out of their nose. Then we had to learn it all over again when she had her tube placed in her stomach. It was other special needs parents that helped us by giving us pointers and telling us what worked for them. For that I am very grateful for social media.

5. I have learned to enjoy the little things, that everything does not need to be over the top. Sometimes the best thing in a week is making it 48hours without a neb treatment. Some of the most exciting things are watching her finally do something after months of therapy working on it. Its not all about the huge, the little things matter just as much, if not more, as the big things.

6.I have learned to realize the value in things. When I was pregnant and looking at baby shoes I thought the prices were crazy and why would someone pay that much for kids shoes. Frankly I don't pay very much for my shoes. Then I had a child with low muscle tone that walks best in expensive shoes because they are well made and have the best support. Trust me I don't just go with things because they cost more, but I have learned that sometimes it really is worth it to spend more. (like with her bed, we tried cheep options first, they all failed so we ended up with the pricy option)

7. I have learned the volume it speaks about a person if they are bothered or grossed out by someone's special needs. Most people are bothered from lack of knowledge, other people truly don't care to know, and I am learning when to teach and then to walk away. If I have told someone the same thing over and over about my child and they don't care to listen and it is something that impacts my child, then the person does not want to know and it is my job then to politely end the conversation.

8. I have learned to care less what other people think. When Jilli was first on a feeding tube we did not go out of the house while she was hooked up to her pump (it ran overnight) then she got an NJ tube and ran for 24 hours a day. Life had to go on. I still needed to run errand and do things so I figured out tube feeding in public. Trust me we have gotten a lot of glares, but I don't care anymore. I use to try to hide it when I was doing something with Jillian's pump, now  I do it right out in the open. At a restaurant this morning her pump went off. I filled and and did everything right on the top of the table and I did not even look to see if anyone else was looking because I did not care. My kid needs to eat, she eats through her stomach, she needs a pump to get it there, so I will take care of that were we are.

9. I learned how loving many people in the medical community are. Some of Jillian's favorite people are in her medical team. I have watch these people love my child as more then a patient. They truly care about my kid as more then just a name on a chart, they want the best for her.

10. I have learned how much one little girl can teach the world. I am blessed to be her mom. She have brought so much joy, love, laughter and amazement into my life. She is a very special little girl that teaches the world to love and lights a room with her smile.

The little things

Last night I cried tears of anger (a different story for a different platform) tonight I cried tears of love

Jillian is a type A person. Things need to be just so. She is very intentional with everything she does. Sometimes it can be frustrating (like when things need to go back in the packaging they came in and the packaging will not longer hold the object because it is packaging and it has served its purpose and wants to retire to the recycling bin) but other times it is really helpful (toys go in the bins they came from, she has steps to how she does things)

Right now her big thing is trash. If it is something that she knows needs to be thrown away she can not handle it being out of the trash can. The thing is that we don't allow her to play in the kitchen so we have gates that seal off our living room/dinning room from our kitchen. There is multiple reasons why she is not allowed in the kitchen without and adult, and she respects that rule and is fine with it most of the time.
Since our garbage can is in our kitchen she can not get to it. So if she thinks something needs to go in the garbage she throws it over the gate. I frequently don't look down as I open the gate making what I step on rather interesting sometimes. Most of the time I don't mind her piles at the gate as I know it is her trying to clean up, but sometimes when you get especially fun things in your foot I get a little annoyed.
Tonight as I opened the gate to the kitchen there on the floor was her used Kleenex. Tonight it made me cry. I know, it is a simple dirty Kleenex on the floor of all places, but it was the reminder that there will not always be little gifts left for me to throw in the garabge on the other side of the gate. Someday we will take the gates down and she will be able to go to the garbage can, someday I will probably be wishing she made any attempt to clean up after herself, and someday she will grow up. But for now I have the gift of finding Kleenex on my kitchen floor. I have the gift of her pulling my hand when she wants something. I have the gift of her cuddles as we watched Lilo and Stitch tonight. She blesses us with so much.
Sometimes I am thankful for the little things that remind us of how great the people around us can be, even if what they leave for us is a dirty Kleenex on the floor.

Curled up watching Lilo and Stitch tonight

On a side note, my one boss and I were talking the other day. She use to be a speech path and we were talking about Jillian's therapy. Through our conversation the question came up that might some of her fatigue with normal two year old things be a lack of oxygen. We always take her pulse ox either while sitting in a doctors office (after she has taken a long car ride) or when she is sick. We don't take is while she is active. Her pulse ox at her last pulmonology app was 95 and she had been sitting for over an hour. I know a lot of her fatigue has to do with her low muscle tone and her muscle issues but I had not though about the oxygen part of it before. I am thinking that is something to ask her doctors and therapists. She has been needing more breaks again during PT and has been taking more time sitting at school.

Her new friend Hucklebee. We got him yesterday at Target. He is a game about following directions and it incorporates at lot of things we do in therapy in a new way. She is in love with him and we have played the game 3 times already

Jilli wore purple today in support of all of her friends with epilepsy! 

My awesome hubby bringing Tubie Friends to the post office for me. This is the perfect bag to hold 4 Tubie Friends.

Pee cream

Yup my two year old asked for pee cream yesterday. She begged for pee cream. See Jillian has a thing where the opening where your pee comes out fuses together. We first found this when she was 11mo old and they tried to cath her in the hospital and it took multiple nurses at Children's multiple tries because the opening was almost completely closed. It has happened several times since. It starts where her diapers slowly are less wet and then she gets to the point where she is barely peeing. Yesterday was the first time however that she could explain to us the it hurt. We knew it did but yesterday she was crying that she had a boo boo. I asked her if she had to pee and she said yes. She then said pee hurt. I asked her if she wanted pee cream and she said yes and kept saying "pee cream" and signing please. It broke my heart. No two year old should have to ask for cream so they can pee. She hates having the cream put on but she laid nicely for it.
She was rather laid back last night. She played with uncle Jason before dinner and then hung out in her high chair and played while we ate dinner and played Ticket to Ride.
We had therapy yesterday afternoon too. She worked hard. Her therapist said that her muscles were weaker yesterday but she was definitely better then Sunday.  These times when her muscles get so much worse kinda stumps everyone. She did great in speech though.

Today she has been kinda crabby. She woke up fussy and wanted nothing to do with Brent this morning and I was only slightly better then he was. She peed a little overnight but not a normal amount.
She went to school and laid on the floor off and on. She would play for a bit and then lay down for a while. She just did not have the stamina. She finally had a better diaper this morning at school so I am hopeful that the cream is starting to help.
She fell asleep on the way home from school and slept next to me on the couch for a bit. Then she woke up screaming in pain. She just kept saying ouch. I tried to feel her tummy and she moved away from me (what I did feel of her tummy in 2 sec was hard). She would let me touch her arms and legs and head but her tummy was off limits, she even covered it with a blanket. Obviously her tummy her. She screamed for about 20min and then calmed down. She just got down from the couch and she has been awake for an hour.
About 10min after she stopped screaming I looked at her and her pants were wet. There was pee out the side of the diaper. It was not that she had peed so much that it overflowed but that her diapers are a little big around the legs right now because the top of her legs have thinned out.

So we wait for the Estrogen cream to do its job. It opens it up and makes it so it is easier to pee. I just feel bad for her though, however she really is handleing it all well and communicating with us whether it be with words or signs so that makes it easier.  All in the life of Jilli...

Sleeping with her babies last night

Sleeping on the couch this afternoon

This is how she insisted on standing when she was in pain. I took the pic to see if any of her dr might know why this position seamed to be most comfortable for her.