Well that did not work... again

I try to live in this balance between optimistic and realistic... sometimes I think I come off a little pessimistic in my realism. The past two weeks have been a journey again in being hopeful something would work but realistic enough to manage my expectations and honest enough to admit that it did not work... again.

Jilli had an appointment with someone in the speech department at Children's two weeks ago. At this point we know multiple people in the speech department because they work closely with GI on swallowing issues (which Jillian has). Jillian's new GI doc sent us back to speech at Children's (this is different from the speech we see each week in therapy) to look at her swallow again.
Honestly when they told me this I was not sure how to feel (I told someone that I think they enjoy watching me go insane, lol) because we have done these trails before and they have ALWAYS not ended well and we have not "fixed" anything since the last one and nothing with Jillian's GI or respiratory system is any better then the last time we did one of these (in fact we added oxygen since her last one) I had to still be hopeful that maybe this time was different, but realistic at the same time.
We met with the speech path and we decided we would try 10ml water trial again. We decided on water because it is least damaging to the lungs when aspirated. The goal was to see if her body could take something orally in really small amounts (15ml=1tablespoon).
We tried multiple times. Jillian will happily take water from a spoon. For how little experience she has had with eating she actually does ok with it. It looks like a baby first taking baby food off a spoon but that is where her skills are.
Then when she was done she would start says "hurts mommy" and "ow" while rubbing her throat. She would also hold her belly. She would have these times were she would look like she was "spacing out" and you could not get her attention (she has done this for a long time after having things orally... the thought is that it is a pain coping mechanism, it looks like an absent seizure). She was also refluxing a lot. You could her the water going up and down her throat and she had times where it would come back up into her mouth. Her breath smelled like puke. This would happen for over an hour after she ate. She would also start coughing and the cough would last for a day or two after she had the water. The cough is a sign of possible aspiration.
We stopped these trials a few days ago because 10ml of water is NOT worth risking aspiration pneumonia or an oral aversion. Jillian has always been fine with putting things in her mouth (sometimes a little too fine with it causing her to aspirate on a piece of food she picked up off the floor back in January) so we really do not want to have her start to associate food with pain because then we are just adding an additional problem. 
We had an appointment with Jillian's ped on Monday just to check in. I told her about what was going on with these water trails and she told us to stop (we already had). Yesterday I called speech to check in with her to let her know how it went. She called me back yesterday and said she had a meeting to go to but she just wanted to let me know quick that she agreed with the stopping and that she would call me back so we could talk more.
She called me this afternoon and we were able to have a long conversation about what is going on. She agreed that doing this water trail was not working. We went back to her being NPO except to take her two meds that have to be given orally for them to work properly (she loves taking these meds and they are a really small volume... she still refluxes them sometimes however not as much with the small amount) We are debating if one of the tests they are looking to do next month is worth it because it holds a risk of her aspirating. She is going to go back to the doctors and talk to them about it. I truly appreciate all of the time she took on the phone with me today as we brainstormed the best ways to help Jillian.
It is good to check in every once and a while and see where her skills are at and how she is doing but we always have to keep the main goal in mind to keep her safe and healthy as can be. Her eating orally is NOT safe. Thankfully she has a GJ tube so she is able to get the nutrition she needs and that is what is most important. So we go back to where we were, but for now that is what is best for her so I am good with that. Hopefully the tests in July will help us figure out some more pieces to the Jillian puzzle and I am hoping for genetics to come back with some pieces too.
We are long enough into this road that if GJ tube feedings are the safest thing for her forever then that is what we will do, the biggest thing is that however we get nutrition into Jillian's body needs to be the best way for her.

In a side note, I want to thank my hubby for a fun date night last night. For our anniversary he bought me a Paint Nite class. Painting is not Brent's idea of fun, but I find it very relaxing. Most of the time we spend time as our little family of 3 and we really enjoy that but it was nice to get some time out with my hubby! We had fun painting and I bet if you asked him, he would even say he had fun. Jillian decided our paintings needed to be hung in the kitchen. I am not sure if that is where they will stay forever but that is where they are now.  

She insisted that she had to wear her scarf to leave the house. She has taken to picking out her clothes and accessories some days this summer... she is my fashionesta! 

Jilli blasts off to space with her great daddy carrying her oxygen for her

This child LOVES Charming Charlies! Grandma brought her back a new shirt from "Mickey's House." Her waist is small enough around that those are 6mo shorts! Summer is the easiest time to dress her because her waist is so small but her length is that of a 15mo old

Us painting... I even dressed up in a cute dress and make-up!

Milwaukee Zoo class and Tube change out

Today has been a good prep for going to Disney... my legs got quite the work out!


It was a busy day for Jilli and I. We started off by stopped by the daycare to drop off some of my bacon cupcakes with maple frosting and to give her teacher a gift. The last week of school was kinda crazy for us and I did not get the gift made that I wanted to for her teacher so we made it yesterday and brought it to her today.
Then we headed to the Milwaukee Zoo for their carousel zoo class. To say I was amazed is an understatement. As an early childhood educator I will fully admit that I find two year olds in large amounts to be a lot to handle sometimes (there is a reason I worked in the baby room and in 4K). When we walked in the room each child was greeted and given a name tag. You could tell the name tag made Jilli feel special. Then the room was set up with different centers for the kids to play in. Jilli wanted to start by making a paper carousel. She then wanted to make her own zoo counting book, and her last center she chose was to paint a horse. I loved that they let her stay in her umbrella stroller for the center part because it made it a lot easier with her feeding pump and oxygen. They also had moon sand, play-dough, books and a few other centers for kids to play with during the beginning of class (it does not surprise me that Jillian chose to do all the art projects). Then they called everyone over to the carpet and each child got a circle to sit on. Each child got a flannel board with cut outs of different animals in different groups. They counted the animals and got to put them up on the big flannel board (this is where a little boy and Jillian's oxygen line got a little tangled). Then everyone went over to a different group of tables and they got to make a tiger that looked like he was on the carousel. Next it was time to come to the carpet for snack and a story. They passed out animal crackers to the other kids and Jilli was just happy to listen to the book. The story was SO cute! Lastly we headed out and rode the carousel. Jillian chose to sit on one of the benches that looked like a bird (if you ask her it was a horse). I was grateful because it made it a lot easier to sit and go around with her equipment.
Then we headed to Children's for Jillian's tube change out in IR. One of our favorite IR people were there today. He has been with Jillian since she was 5 months old and we have not seen him in a little bit because we were doing change outs on the day he was not on (not intentionally, we really like him, it is just what worked best for us schedule wise)
IR was a reminder to me today of praying for the little things. I had blogged after last tube change out that they told us they were switching brands of tubes and that I was not excited about that all. When I talked to GI about it they had not heard anything about it, so we went in today not knowing what brand we were getting. They are still going to be stocking Jillian's size in the tube brand we love and moving to a different brand for some of the other sizes. WOW! I know I have had some friends that were specifically praying about this and to walk in today and find out they they were going to be keeping Jillian's size in the brand that works best for her was amazing news (not to say the other brand is bad, just the brand Jillian has is what works well for her and I hate messing with something that is working for her)
 Jillian did amazing during tube change. She laid on the bed without a whimper. Everyone in the room was amazed. When Jillian first started needing tube change outs in IR she would scream and scream and scream. Change outs broke my heart and where exhausting for everyone involved. Now they are relatively easy and she lays nicely. Sometimes she makes a face that shows she is not loving it but then we ask her a question about something she likes and she is happy as can be. Today they let her play with a toy laptop while she laid there and she had a blast. I am SO grateful that tube change outs have gotten so much easier for her.
Then we went to Barns and Noble to try to get the book that we read in zoo class but they did not have it so we walked around the mall and looked at all of the cool Lego stuff around. Mayfair has tons of Lego stuff all over right now and it is really cool. Then we headed to Target to pick up some Fathers Day gifts. We then had an hour to do something before Brent was meeting us for dinner. We went to Southridge because I wanted to look for capri length white leggings (proving to be hard to find) and Jilli loved looking around the Mickey store. If you have a little girl who loves Disney princesses go to the Disney Store now! They have the princesses dresses on clearance at really good prices. They are all way to big for Jilli but she loved looking at them. We have been looking at different princess stuff for Disney, it is just tricky to find in her size, but we are creative :)
Then we met Brent a Quaker Stake for dinner. It was bike night outside so it was crazy outside but inside it was calm and we had a nice meal.
Jillian fell asleep in the car and I think she might be out for the night. I am typing this to the sound of her snoring (I still thinks she snores a lot more then a two year old should...)
So that was our busy day!

Jillian painting a picture as a gift for her teacher

The other day she insisted that she needed to be Snow White

We stopped at the Zoo on Saturday after Brent helped at Church and I went to some rummage sales with Jilli (know anyone selling a nice little tikes outside playhouse?) Brent had not been to the zoo yet this year and Jilli wanted to ride the train!

The was walking around with her maraca says "cha cha cha"

Brent fell asleep on the couch... Jilli tried to pick him up

Since Jillian's birthday and Christmas are so close together we put some of the things she gets up in her room and slowly open them over several months. She was so excited when she found this book reader in her room the other morning that she wanted to bring it down and read books. She played with it for a really long time the other morning.

Jilli coloring her giraffe in zoo class (she was proud to have her giraffe shorts on today)

I don't know why she looked worried in this picture... she was loving coloring!

Painting time at zoo class

 

Meet the new co-workers

It is the Friday of my first official week as a say at home mom!

I was laughing yesterday as I had butterflies in my tummy as we headed to the first toddler library time. Between working and running to doctors/therapists Jilli and I have never been to a toddler playgroup, or frankly any real gathering of mommies and kids. I know the moms at therapy, we know each others kids and encourage developmentally appropriate interactions between them, however most of our conversations involve getting our kids to do that they need to do. Thankfully with this group of moms (the kids who have had therapy around the same time as Jilli has changed over the last year) I have never felt like it was a show or trying to impress each other, our kids all have special needs, that is why they are there.
Our church has Mops but it is during the day so we have never gone and in the summer moms get together at a beach but with Jilli's needs a beach is not a good place for her, so we have never joined in that either. It just is what is, and part of having a kid with different needs as the typical kid. This is not a feel sorry for us kind of thing, it is just the facts of life.
It probably sounds funny but I was nervous to go to our first toddler story time at the library. We live outside of a ritzy tourist town with people who make a lot more money then we do. I was also bringing a child who is different. It is not hard to tell she has special needs with the oxygen and feeding tube lines running out of her shirt and attaching to bags.
I had everything all set to leave the house, we were running early... and then I spent a long time looking for my keys... they had fallen into the box of oxygen! So we got to the library about a minute after story time started so we tried to sneak in.
Jilli loved story time. It was all about frogs and by total chance she had frog stickers on her oxygen line that day so she was really proud of that. She mainly just observed the other kids but she did join in some. It was fine. The moms did not really interact with each other, not in a cold way, just everyone was focused on their kids.
After story time was over we walked to the farmers market and got some fresh food to make dinner.
As I was leaving town (we live out in the country) I was thinking about how my nerves were like the jitters you get on the first day of a new job when you are meeting everyone new.
I thought the whole time that I felt jittery that my feeling that was was pure crazy! It is not like I'm a new mom, I have been at this for a little while now, and it is not like have have not spent my fair share of time with children (I have been babysitting since I was 11, and started teaching a  3 year old Sunday school class at 12!) The kid part of this stay at home mom gig is not what scares me, instead it is the other moms... and the house work.
Little side tangent... I am going to have to figure out a way to get past the "I'm a stay at home mom now so my house much look like it is on the cover of Better Homes and Gardens" It is Friday and honistly my house looked a lot better on Wednesday then it does today. I made a fun dinner with stuff I got at the farmers market and it created a lot of dishes, and Jilli and I made a garage for her toy trucks out of a cardboard box so there are crayons all over because she is two so we have colored on it multiple times today. I will have to find that mental balance of getting things done and having the motivation to do so, but also not beating myself up about the fact that if a photographer walked into my living room at the moment I would probably cry.
So I met my first round of new co-workers... the moms at toddler library time... next week it is the moms at the zoo for zoo class! 

Playing the Disney Jr version of twister... it is funny to watch because 90% of the time she sat on her butt and pointed to what she was suppose to touch... she had a great deal of fun though

I have had this abc thing for a while but forgot about it. I am trying to find my pin trading lanyard before we go to Disney so I am cleaning out my office and stumbled upon this. She really enjoyed it.

We worked together to match all of the big and little letters and name them. Then she had to go back and put the little letters ON the big letters... she is so funny about things sometimes

She looked like she was up to something in this picture... she fell asleep in yesterdays close and had not changed yet so she looked a little of a hot mess... but hey, why not!

Our cardboard box garage. I wrote "Jillian & Mommy" on it, she picked up a crayon and told me she wrote "bumpa" on it. She then went back over our names. She was so proud of her writing. Good pre-writing skills!

ps: I worked out with the Wii Fit today for the first time in a long time (it said 401 days... I don't feel like it has been that long!) My goal is to go to Disney and come home and not see tummy pouch in pictures and not need to wear spanks with skirts... so I am determined to tone around my waist and legs at the same time I become a stay at home mom and don't have to move as much as I did as a teacher... I will do this! My little fitness couch today was so cute. Jilli would clap if I did something correctly. She also tried to do everything that I did, which was cute, got a little interesting what she fell on the Wii fit board at one point but when you excessive with a two year old you have to be a little flexible. :) Hopefully we will keep up exercising and get in better shape this summer!  

Why Awareness

Sometimes I forget why awareness is such an important thing when having a child with special needs and then sometimes reality hits you in the face. Sometimes I wonder why having a Feeding Tube Awareness magnet on my car, and telling our story matters. I have two stories from this past week, not for you to feel sorry for us, but to remind you about the value of a person and to think what you say.

Story one:

Friday night we went to have ice cream for dinner because it was my last day of work. Ice cream for dinner has been a thing since I was little that has always been reserved for really bad days or for celebrations. I am now allergic to milk so it is rare that I eat ice cream (I get swelling in my ear from it) but sometimes for something really special I eat ice cream for dinner. We are really trying to crack down on our budget to save up to go to Disney World so for us right now going out for ice cream is a huge treat.
It was nice out so Brent and I got our ice cream and went to sit outside. There is one little table and two chairs on the sidewalk in front of the ice cream store. Jilli was in her umbrella stroller and we pulled her up to the table too. Jillian is use to sitting in her high chair or a stroller while Brent and I eat so it is normal for her to either just sit or to play while we eat. We were enjoying a little family time.
Two women walked past us, the first one got about 5 feet behind Jillian's stroller, stopped, turned to the woman next to her and said in that tone "Did you see THAT kid?" It was a Friday night around 7pm, there were not many families outside at this point, I knew what kid we she was talking about. The other lady then said "and those things on her face!" Jillian has two stickers each day that hold on her oxygen. She is very proud of her stickers and even though with her hair band she does not really need the stickers, they make her happy. They continued to stand there... 5 feet from my child and talk about her for the next several minutes. I sat in shock. Brent caught that something was going on and after they left he asked if it was our kid they were talking about. My heart broke between anger, frustrating, and pity for these woman. No, I'm not talking about children, or teenagers, I am talking about woman older then I am. I was blown away by their audacity. I kept trying to convince myself that they could not really have been talking like that about my kid, but I know they were, honestly I am almost glad they were whispering so I could not hear most of their words, but I got enough 

I was not going to blog that story, until today happened, and it reminded me why it is so important to share awareness.

Story two:
Today I was looking through Facebook and a baby center post popped up on my news feed. It was titled "What happens when you don't abort a baby with a genetic condition?" I looked at some of the comments, hoping to find people talking about what a gift kiddos with genetic conditions are, because I can sure tell you mine is. We chose not to do any prenatal testing (other then ultrasounds) with Jillian because to us we always said we were happy with any baby we had. After struggling for over a year to get pregnant we were just happy to be pregnant. For Jillian none of that testing would have probably told us anything, and at first everyone thought she was a "normal" healthy baby (I'll rant sometime how I feel when people say "as long as the baby is healthy I'm happy") It took a while for us to realize the big picture, and here I sit two and a half years later with a little girl who gets 100% of her nutrition from a feeding tube and is on oxygen when she is going to be moving around. She has had 9 hospital admissions, 5 surgeries, weekly therapy, and over 100 appointments with medical professions. Not what you imagine from a baby with an APGAR score of 9.
So as I read the comments, some of them pro-life and some of them pro-choice, I stumbled upon a comment (I only read a few comments, probably less then 10) that stated along the lines of "I get being ok if a baby has something like downs or something, but it is different if a child has to be hooked up to stuff to live. If they need a feeding tube to eat and things to help them breath. That is no life." I have NEVER wanted to yell and cry so bad at the same time. No life to live!?
If you have met Jillian, or if you read my blog you will know very differently. She is happy as can be. People stop me and tell me that they have never seen a child so happy just to live life before. She makes random strangers smile. She had all of the cast member at the Disney store grinning today with how excited she was just to be in their store. She is an AMAZING little girl and I don't just say that because I am her mom, I have many other people that would stand behind me in that statement (and many people that join us each year in walking, running or raising money for Team Jilli and literally stand with us) My child has a life. My child has an amazing life. Different, yes, but in NO way less, so please don't discount her for her genetic condition, she is still very much a person with emotions and feelings, and I as her mom have them too!


I don't want to end this on a sad note though...

Story three:
After leaving the ice cream store, we felt raw with emotion and were not sure what to think. We needed to go grocery shopping and sometimes just wondering a store helps calms my emotions (Target has some magical quality about it) Since we needed meat we needed to go to Walmart (our Target does not have a fresh food area) and as we were walking through Walmart a store clerk stopped us to tell us what an amazing child we had and how we were so blessed to have such an awesome little girl. Not that the person at the ice cream store had changed our minds about how awesome Jillian is, but our hearts needed to hear the kind words of this stranger. We had never met her before, she did not know our story, but she was so sweet and so kind. We left Walmart with a very different feeling then when we went in. We left with smiles and our heads held high.

Our little girl is awesome... just like any other child... she is just different!

Please join us in raising awareness that just because someone needs medical help, does not make them less of a person. Jillian's feeding tube and oxygen help her to live to her full potential; they don't make her less of a person. Obviously if someone feels they can post something online for the world to see like that, then we still have some awareness to raise... will you help me?

Jillian showing off her tiger stickers at the zoo, with her oxygen head band on.... having a ton of fun!

PS: Thank you to organizations like Feeding Tube Awareness and Mommies of Miracles for helping to get the word out about why kiddos with different needs are just as valuable!

Disney movies for Toddlers to watch before going to Disney World

Disney movies for toddlers to watch before going to Disney World

We are in full swing planning for Disney world. We only decided about 3 months before our trip that we are going to Disney world. For Disney... that puts us in the category of planning a last minute trip, lol.
This will be my first trip with a toddler. I went for the first time when I was 7 years old, and for the majority of my trips there I was over 15 years old. This will be a different type of trip for me with different planning. Normally it is all about the big rides and this time it will be more about characters and the slower rides. One of the fun things about Disney is all of the details put into the rides. I know people who go to Disney without ever having watched many of the Disney movies and they enjoy the parks, but I personally find it a lot more fun if you know what the story is behind the ride.
Jillian is in the toddler stage in life and has watched a few Disney movies and is in love with Mickey and the princesses. I got to thinking what Disney movies go with different rides at the parks so we can make a point to watch them before we go. I am calling it our "Disney movie summer bucket list!"
Now, these are only for rides that toddlers can ride. There are other movies for riders toddlers can't ride, and I bet there is a website out there that lists them (I don't know I did not look up anything online for the other then Disney park maps) but for this I am focusing on things for a toddler.

Magic Kingdom:

·         Tomorrowland:

o   Monsters Inc. Laugh Floor

§  Monsters Inc.

§  Monsters University

o   Buzz Lightyear Space Ranger Spin

§  Toy Story 1, 2, and 3

·         Fantasyland:

o   Mad Tea Party

§  Alice in Wonderland

o   Dumbo the Flying Elephant

§  Dumbo

o   Enchanted Tales with Bell and Be Our Guest

§  The Beauty and the Beast

o   The Many Adventures of Winnie the Pooh

§  Winnie the Pooh movies

o   Mickey’s PhilharMagic

§  Old Mickey Mouse shorts

o   Peter Pan’s Flight

§  Peter Pan

o   Under the Sea

§  Little Mermaid

·         Frontierland

o   Both Slash and Big Thunder Mountains have too high of a height restriction for toddlers

·         Liberty Square

o   Haunted Mansion

§  The Haunted Mansion movie is not real appealing to toddlers

·         Adventureland

o   Magic Carpets of Aladdin

§  Aladdin

o   Swiss Family Treehouse

§  Swiss Family Robinson most likely will not hold your toddler’s attention

Epcot

·         Future World

o   The Circle of Life

§  The Lion King

o   The Seas with Nemo and Friends and Turtle Talk with Crush

§  Finding Nemo

Hollywood Studios

·         Toy Story Midway Mania

o   Toy Story 1, 2 and 3

·         Muppet Vision 3D

o   Any of the Muppet Movies

·         Disney Jr. Live

o   Shows on the Disney Jr

·         Beauty and the Beast Show

o   Beauty and the Beast

·         Honey, I Shrunk the Kids Movie Set

o   Any of the Honey I Shrunk Movies, not as engaging to toddlers as school age children

Animal Kingdom

·         It’s Tough to be a Bug!

o   A Bugs Life

·         Finding Nemo the Musical

o   Finding Nemo

·         The Lion King Show

o   The Lion King

·         Any of the Disney Nature Movies for the Rest of the Park

Other movies/shows worth watching before going:

·         Disney Sing Along Songs: It’s a Small World

·         Disney Sing Along Songs: Camping Fun

·         Disney Sing Along Songs: Waterpark Fun

·         Full House Visits the Mouse

·         Disney World Travel Channel episodes 

If you are staying at a value resort, they have Disney movie theming to them. We are staying at Pop Century, so we are also making it a point to watch Lady and the Tramp and Jungle Book because the figures from those movies are large at that hotel.   


If I missed any please let me know in the comments :) 

*I just found "The Muppets go to Disney World" on youtube... corny but cute and my 2 1/2 year old loved it*