Thursday, December 31, 2015

8 Christmas celebrations, one hospital trip and baby

My goal was to do this as separate posts over the past few weeks however life. So I am going to try to break this up in logical ways... but fair warning this post might get long and will have a ton of pictures at the end because I want to make sure to document this great time of year!

12/15- Christmas with the Ganz family:
God has blessed us with some amazing people in our lives and we are so grateful for everyone who is walking along side us in life. Jaime and I have been friends since college and Brent and Jason have become great friends too. If you ask Jillian who her favorite people are Jaime and Jason (said together as one name) would be on that list. We have all been awaiting the arrival of their little boy and we had our last weekly meal before he was born and celebrated Christmas. Jillian let daddy open his gifts before her. She is really excited because she got Gator Goal (a game suggestion from her PT). It was a yummy night too of homemade beef stew and chocolate chip cookies.

12/16- Jillian's 3 year check-up:
It is hard to believe she is already 3! Her check-ups at this point are just the doctor and I talking about what is going on with all of Jillian's other doctors. Right now we are in a holding pattern until we see genetics in January and neuro in February (Prayers would be really appreciated for both of those appointments as they have the possibility of being big game changers). I talked to Jillian's dr about the random stomach aches she is getting (she just doubles over in pain and starts crying for a couple of minutes and then is fine) but she suggested to see what GI has to say as these are really random and have no correlation with anything else. We are still holding off on vaccines until we have a diagnosis because Jillian gets so sick with them. We also talked about how much better this fall went with her being on oxygen and not in daycare (NO nebulizer treatments this fall!!!!!!) and the doctor asked us to start to think about homeschooling Jillian as she feels it might be the safest thing for her body, we have some time but it is something Brent and I are trying to figure out. This might be one more way where God orchestrated our past to give us the tools we need now.
Also during that week we went out multiple times at night to look at Christmas lights. Sadly the lights in Lake Geneva were a let down but the Grand Geneva was as awesome as ever! 

12/19- Christmas the three of us:
Brent and I started this tradition when we got married. I am not going to haul the gifts for the three of us to Kenosha for Christmas day just to bring them back home so we have our own little Christmas on the Saturday before Christmas. We open gifts, go out for breakfast and just have a low key day. We got up and opened gifts. Jillian let Brent go first! I was able to pull one over on Brent big time. We set a small budget for each other for gifts so normally we don't buy each other something large, however this year I got a new phone from Best Buy and was given a large gift card back for buying the phone and then when the sale ad came out with the Apple Watch on a good sale I knew just what I would do. Brent has wanted an Apple Watch since before they came out but it was not in the budget and he was fine with that, so when he opened an Apple Watch he was completely shocked! Jillian's big gift from us was an art easel with art supplies. Jillian loves making art! Brent got me some new Rachael Ray cooking tools which made me really excited (and some Star Wars stuff too). We then went to the diner in Lake Geneva for breakfast. My morning sickness had been really bad that morning before Brent and Jillian got up but thankfully I was able to eat some of my yummy banana break french toast at the diner. We then went home and I went to bed for a bit and Brent and Jillian started working on the living room/dinning room/play area. We decided to rearrange our main floor and put our table where all Jillian's toys were and Jillian's toys in the dinning room. In the afternoon we met Jaime and Jason and my mom at the movie theater in Lake Geneva and my mom and Jilli went to see the Good Dinosaur and the rest of us went to see Star Wars. It was really good! Then we all went to dinner together. Overall it was a great day!

12/20- Christmas with the Upton side:
Jillian's first Christmas was insane. Christmas eve we had her first ped appointment and they were really worried about her weight, and then we went on to cram too many Christmas celebrations into two days. It was stressful and frankly rather sucked. We were running so fast from place to place that we barely got to see anyone and I spent more time crying then anything else because I felt like we did not get quality time with anyone and spent more time in the car. I vowed we would not repeat that again and we have since spaced things out a bit. We now celebrate Christmas with the Upton side of the family on the Sunday before Christmas. We have everyone out to our house and have dinner and open gifts. Instead of spending a short bit of time in the running between places with them, we get an evening were everyone is able to sit down and take it slow. Jillian really enjoyed her new giant pen and her Anna doll. Brent got a cord reel for the garage that he is super excited about and I got a new waffle iron and scrapbooking supplies. It was a nice relaxing night!

12/21- Christmas with Dan:
Dan is another person who has been in our lives since college and has lived with us twice. Jillian loves that he gets down on the floor and plays Legos with her and I am thankful for how helpful he always is when Jillian is in the hospital. I was feeling pretty good that day and made a large dinner for us. We opened gifts and Jillian was excited to get Doc McStuffins Legos that she and Uncle Dan put together that night. We all hung out and watched the Christmas Light Fight and had a nice evening... until bed time were suddenly "morning" sickness got the best of me. I ended up being up most of the night sick.

12/22- ER
Being sick continued and by the evening I was not able to keep anything down even with a suppository to help me stop vomiting. I had also been vomiting so hard for so long that I was now vomiting blood and very light headed. We decided that I needed to go to the ER for fluids (this was the second time this pregnancy, back in early November I was in the ER because I could not stop puking as well). My mom met us at the ER so Brent did not have to take Jillian into a place with so many germs. After two bags of fluids and two different meds the vomiting stopped and I was able to go. I had no other symptoms other then vomiting so they said it was just how my body was dealing with being pregnant. My body does not deal well with being pregnant, but it is worth it in the end for the gift of a child. It was a very long day but I am thankful for my family and friends to help me through.         

12/24- Christmas Eve
We had a rather low key morning of just hanging out at my parent's house. Brent headed to church in the early afternoon and the rest of us went to the 5:30 service. We got there early (car sickness is something I am having a lot of this pregnancy that did not bother me at all last time) and spent time catching up with people. The Christmas Eve Service was really nice. Then we headed over to my grandma's house for Italian Beef (dinner was good but the main event is the cookies and home made rice pudding!) We all just spent time together talking and catching up. Once we got home we got our traditional "big" present. This tradition started when I was little. Jillian got a Thomas the Tank wooden set and Brent and I got the double stroller we wanted! I am very excited! We got the Baby Jogger City Select so it can be either a single or double stroller and it works with the Upppababy carseat we have for the baby (the carseat was an amazing cyber Monday deal)

12/25- Christmas!
We woke up Christmas morning at my parent's house. Jillian was so excited she woke up at 6:20. We made her wait until 7 to wake up my parents. Brent then went and picked up my grandma and once she and Brent got back we headed into the living room to open gifts. Jillian's favorite gifts from grandma and bumpa were a set of princess dolls, a microphone with books and board games. Brent got the drill he really wanted and I got accessories for the stroller, new shoes, and books about Disney World's history. We had a yummy egg bake and french toast casserole for breakfast. My Grammy and Grandpa stopped by for a little bit and so did Brent's grandpa. We then headed over to my grandparent's house. We had snacky food galore and opened gifts. Jillian got a lot of really nice things from my family! Brent is super excited about his lightsaber grilling tongs and I am excited for the dutch oven, scrapbooking picture frames and oven mit! We then headed back to my parents where we watched ti Disney Christmas parade and Jillian played with toys.

12/26- after Christmas shopping
Our morning got a little bit slower start then I wanted because morning sickness but mom, Brent, Jilli and myself enjoyed going out and doing after Christmas shopping. My mom and I have been going out the morning after Christmas for a long time and it is when I buy all of my wrapping paper for the next year.

12/27- church, Dan and shopping
We got up and went to Church. Jillian loves singing at church! Then we came home (Brent picked  up Subway for lunch, my love right now is their chicken bacon ranch sub with lots of veggies!) and Dan came over to celebrate Christmas with my parents and then Dan, Seth and my dad went to my grandparents house to watch the Packer game and Brent, mom, Jilli and I went to the mall to take care of returns and use some Kohls cash. We scored big at Kohls for Jillian as they have long shirts (needed to fit over the tube) on clearance for around $1 each! Other then a really creapy dude who reached for my purse and kept staring at me, we had a good time shopping and then went to Olive Garden where I could have drank a gallon of their peach iced tea!

12/28- Christmas with the Patel Family
We have celebrated christmas with my Aunt Sandi (my mom's best friend) and Uncle Todd all my life and it is a special part of our Christmas tradition. We always go to Bakers Street for lunch and then come home and open gifts. It is a fun time just being together! Sandi, Todd and Dan (cheese) were sleeping at my parents so we got to spend extra time with them which was nice! We spent the day together hanging out and watching the snow. Our plan was to go home that night however the snow was too bad so we ended up spending an extra night at my parents.

12/29- hang out and head home
Brent had to get up early and head to work. Jilli and I hung out at my parents house most of the day and then once Brent was done with work he came and picked us up and we loaded everything in the car and headed home. We got home to a very snowy driveway that Brent had to take care of before we could pull in. We unloaded the van and started working up putting everything away. The night was even more exciting hearing the Jaime and Jason's baby was born!

12/30- Therapy and baby
Jilli and I spent the morning working on putting stuff away. Our therapist was kind and let us move our therapy day for this week. We got up to therapy and I went to start her oxygen tank and a part of the regulator was missing. I left Jillian there to do sitting activities with her therapist and I drove home to find the missing part and grab the spare regulator. I am normally a part of her therapy so it drove me crazy to be driving instead but it ended up being fine. They kept an eye on her pulse ox and are able to use it to prove once again what her numbers look like when she is not on oxygen (they are not good numbers). We then drove to the hospital to meet baby Emerson! He is soooo cute! We spent time visiting and Jillian was even able to hold him. She kept saying that she is a big helper and talked about how he can come and play with her toys. Brent met us at the hospital after work with dinner and we all had our weekly dinner together with the newest member of our group! I am so excited to watch him grow and for Jaime and Jason. Jillian keeps talking about him and how excited she is!


So that has been the past few weeks in out life. Crazy but a lot of fun and it was nice to spend quality time with people. Thank you to everyone who was a part of our Christmas celebrations!

Now here is a couple of pictures :)

Jillian with her nativity finger puppets

getting her Minnie Mouse from Jaime and Jason

Jillian helped to pass out all of the gifts

playing princess Candy Land

We do "school" time a few times a week. I got a new laminator so I made some fun new things!

baby bump!

She looks so grown up!

playing with some of her new toys

cuddling her daddy

this was setting up the Christmas tree at grandma and bumpa's

waiting to go into the living room to open gifts


she let daddy open first!

Brent getting his Apple Watch

Jillian's turn

art supplies

a book self

stocking time

she is too cute!

Her art easel

Jake legos

that tongue helps get things out of the bag! 




she helped me open my gifts

Our new dinning room arrangement

Jillian's play area
opening uncle Dan's gift

showing off her new Christmas jammies

Christmas jammie selfie!

waiting for her big gift!



Mommy and daddy's big gift

Christmas feeding pump bag


Jilli and daddy cuddling Christmas morning


Off to get her stocking


looking at her new princesses

train tracks!

Brent opening gifts


playing with her princesses (they are really cool!)

A puzzle to work on fine motor skills

Seth opening gifts

Jillian opening her new blanket that she has already taken to sleeping with

Her cute Christmas outfit


Opening gifts is best in a crown!


Frozen books!


Christmas nap on mommy

The upton Family


Jillian in the new stroller

She made Brent push her around the house

Playdough with Bumpa

In a box

Playing Ticket to Ride

Jillian got new feeding tube belts from Kangrootique

stickers at Olive Garden

playing board games with Uncle Todd

Playing Santa's house with daddy


Her new Frog game from the Patel Family


She got the Incredables!

Uncle Todd with the frog eyes on

Aunt Sandi pushing Jillian in her box "car"

Coloring!

Uncle Jason showing Jillian Emerson

baby Emerson

Jillian holding Emerson

Jillian at Therapy

They brought snow inside for Jillian to play in since her lungs dont handle being outside in the snow

belly work out!

Jillian and her awesome PT!

Tuesday, December 15, 2015

Jillian's 3rd birthday

Its hard to believe that my little girl is 3! We had a fun few days celebrating.

Friday:
We went to zoo class all about turtles. She LOVES zoo class and she had a lot of fun learning about turtles and doing a bunch of projects. Then we met some friends for lunch. After lunch we headed over to Betty Brinn to play with friends. The girls had a great time playing with each other. Jilli was worn out after her fun day and spent most of the rest of the day sleeping!

Saturday:
We worked on cleaning up the house a little (even though right now it does not look like anyone has cleaned here in weeks!) and then headed into Kenosha. Brent needed to get his tire looked at (it keeps going flat) and the girls did some shopping. Then we picked up my grandma and we all went out for dinner. After dinner we went back to my parents and everyone played hide and seek together. We then tried watching Home Alone however it freaked Jillian out so we turned Rudolf on.

Sunday:
In the morning we went to church. Jillian loves to sing. Then we ran and grabbed a quick lunch and then came back and set up for Jillian's birthday party. We had Jillian's party at church and had tables set up with boards games for people to play. Jillian loves board games so it was the perfect party for her. She then opened gifts and then the party we over. We loaded up and headed back to my parents to grab the rest of our stuff. We watched a little bit of the Packer game and then headed home. Dan had most of Jillian's gifts in his truck so he drove out to our house with us. Jillian enjoyed playing with her new Duplos with Uncle Dan.

Monday (her actual birthday):
Jilli did not want to miss any of her birthday so she woke up at 6. We started the morning by watching the Disney Sing-Along Songs DVD of Christmas songs. Then she played with toys for a while. She had PT in the afternoon. We then went to Target to pick up a few things. The afternoon was rough for her as she got up too early and then had PT and she fought a nap. She was definitely using the philosophy of "its my birthday and I'll cry if I want to." Once Brent got home from work we played a couple of her board games. Then she was overly tired and getting herself into trouble. We all curled up in bed and watch the Great Light Fight and Jillian fell asleep in my arms.

She got books in the mail for her birthday!

Waiting to go into zoo class

She is a ham sometimes!

She made a turtle shell in zoo class

Turing the motorcycle wheel


Jillian the bus driver

Jillian giving out loans

Two girls fixing a car
I am so glad the girls got to spend the afternoon together. These are friends we have med through me having this blog and sharing the journey of raising a child with medical needs.

opening her card from great grandma Nancy

Playing hide and seek with uncle seth

The birthday princess

Playing a game with GG

Playing with Uncle Paul and Jolie

Ticket to Ride

Logo


Jaime and i both pregnant at the same time

Ants in the Pants

Adults playing Ants in the Pants
Jillian's new chair

Play-dough

New dress

Books and a new box to carry things

Doc Duplos

Sofia the First Duplos

Doc pet vet

airplane for her little people

Sofia horse Duplos

opening her new bed!

she was so excited

It is a princess toddler bed frame that her comfy lift bed will fit into

reading Duplo instructions

Building with uncle Dan

on the scooter at therapy

In her new Doc tent

Playing games with mommy and daddy

cuddle time!

My sweet girl sleeping in my arms
 Thank you to everyone who celebrated her birthday with us!

Wednesday, December 9, 2015

Eye doctor, Speech and life

Its had to believe that in less then a week my little girl turns 3! Its just crazy to me. We have a fun next few days planned and I am excited to celebrate with my little girl!

Last week we met a new doctor. The eye doctor at Children's. Jillian did a great job. There has been a little question for a bit about the possibility of her being color blind and the testing for that was inconclusive. The thing with color blindness is its something that will make itself known in time and there is nothing we can do about it if she is. She got to have her eyes dilated and she told me she was seeing crazy! She is such a goof! They said her eyes structurally look really good and they would see us in 2 years. Good news!

Last week we did not make it to therapy because I got sick on our way there (I sure heard about it all week from a little girl!) but we did end up dropping of her neuropsych report later in the week so they had that info to go on. On one speech test she scored in the 30th percentile but on the speech test that her therapy place also uses she scored in the 70th percentile. Best guess is that she sits someplace between the two but that is still a good place to sit. We are taking a 3 month break from speech therapy and seeing where she is in three months without services. The good thing is that with doing a break if in three months we decide she is still needing speech we dont have to do a re-eval, we can just restart services. We will still be at therapy weekly for PT anyhow so we are able to check in an keep tabs with her speech therapist. I think this will be a good chance for her to show us her stuff. She has come such a LONG way in the speech front and I am so proud of all of her hard work!

Last week we also got in the mail some papers I have been trying to get my hands on for a while. When they did Jillian's muscle biopsy they sent pieces of her muscle out to two different labs for testing. In the Children's official report it references those reports but it does not include those reports. I wanted to see the reports from the labs myself. I am glad I did because low and behold one of the values is off on something and the Children's report makes no mention of it. We don't completely know what this value being off definitely means but after talking with therapists and others we have an idea. We will be taking these papers with us when we go to Madison in January and are hopeful that is the missing piece we were needing in figuring out the Jillian puzzle. Right now we are hopeful that we are one step closer to a diagnosis. We are kind of frustrated right now that Milwaukee genetics did not catch this nor did they tell us about it or know anything about it but I am trying to remind myself that there is a reason for the timing and maybe it is someone in Madison that we need to be seeing for the official diagnosis.

Otherwise around here right now we are in full swing for Christmas. The tree is up and most of the gifts are wrapped. Jillian is great about not touching in the tree or the gifts under it. The past two years the tree has been in a baby gate but this year she has been a big girl and we have not needed to do that. Next year we will have a 6mo old at Christmas time so I think this is probably a one year break from the gate. Jillian and I are enjoying watching Christmas movies and she loves singing Jingle Bells. She has also been very into play board games and playing princesses. She has been so great with me being sick. I am so blessed! If I get sick she will come up to me afterwords with hugs and ask me if I am feeling better. Her doctor kit has been getting a lot of use on mommy lately and she is so sweet giving me check ups. She got to come with me on Monday to the OB because last Thursday they could not find the baby's heart beat so they had me come in first thing Monday for an ultrasound where we got to see the baby jumping around and moving great. For my first ultrasound she was super interested, for this one the iPad was most interesting but she wanted to know why the doctor was putting goo on my belly. Thankfully my OB was very good with her. We have also started her on her new meds from GI. We will see if they help!    
She was explaining to her baby Jesus that he came out of Mary's tummy!
She thought her Roo needed a diaper instead of her!
She wanted to have drawing time the other night. She told daddy he needed to draw the little mermaid, lol!
She was waiting at the window last night for he Jaime and Jason. She was afraid they were not coming. It was rather cute. She loves her JaimeJason (that is how she says their name, its just one word)

Wednesday, December 2, 2015

Our big news!

We are expecting a baby in June!!!!!!


I am about 11 weeks along, in what feels like it has been a long 11 weeks. "Morning" sickness has not been so kind this time around (I was sick with Jilli too, just not this bad). I ended up in the ER with dehydration a few weeks ago but they have me on meds now and they are helping some. This week I have felt a little more human (says the woman who just puked in the garbage can) so I am hopeful that I have turned the corner, one can hope! No one said pregnancy is easy, but so worth it!

This baby is a God planned baby all the way. Let me catch you up to speed with what has been going on:

Brent has wanted a second child since about the time Jillian was born. I told him at first that we would talk after she was a year old. After having an emergency c-section the idea of doing that again right away was not at the top of my list. Then we started to figure out that there was more going on with Jillian and her medical needs and by her first birthday my comment was to talk to me when she is 4yr old and hopefully by that time everyone here will be sleeping through the night (I have come to the conclusion now the sleeping through the night is highly overrated).
We started the mix of genetics and trying to figure out what was going on. At the same time some families that I know from facebook went through some very hard stuff with kiddos like Jillian and all I could think about was could I do this with a second kiddo and is it fair to Jillian or a second child?  Do I really have enough time?
See while Jillian has no diagnosis the thought is that it has a genetic link. The thought is that my weird health stuff is related. The best guess is that she has a mitochondrial disorder and you get your mitochondria from your mom. I don't blame myself for Jillian's stuff, that would be silly, its genetic, but when you have a kid that most likely has a genetic disorder it makes you think a little bit more about having additional kids.
God started working on my heart and so did Brent because honestly there was a time were I was really thinking Jillian was going to be our one and only and I was really good with that. Brent would ask every once and a while about more kids, but I am blessed with an amazing husband who gave me the time and space I needed. He never pushed the issue even though he wanted another child.
God started working on my heart. Like a every sermon you hear stirs something inside of you and you spend your time at church each week wrestling with God. Finally in August I waved my white flag. I came to the point where I remembered that God has plans for my life and one of my greatest gifts in this life is being a mom to the children He blesses me with and if He is asking me to be this child's mom, it is the least I can do to say yes. Brent and I talked and decided we would try after we got back from Disney. It took us 18months of trying to get pregnant with Jillian, this baby was conceived the first month of trying. God has a timing, God has a plan.

So what about all those questions and fears I had to wrestle with? I have come a long way (and am excited for this little one) but I know others will have some of the same questions about this baby that I did so let me tell you what I have learned:

Will this baby have the same thing as Jillian?
This question is hard to answer because the don't have an official name for what is going on with Jillian. What I do know is that if this child does, who has better training in whatever "this" is then two parents who have been helping their child with it for almost 3 years? Given that no doctor seams to be able to tell us what is going on, that by default makes Brent and I the experts on it. I know how to run a feeding pump, oxygen is worn like a second purse, this is our normal. God gave us the gift of Jillian and I am SO grateful for her. She is who she is and I love her for her, all of the medical stuff included. I have seen God use Jillian's story to touch people and bring people back to Him in ways only He could. I would not wanted my parents to not have me because I might have had medical issues, I would not have wanted to not have Jillian because of her medical issues, so why would I let the possibility of a child with medical needs keep me from having that child?

Are you prepared to have a second child with needs?
Were we prepared with Jillian? To a degree we were prepared with Jillian based on things in our life that we had gone through. I have had an odd medical past and am a licensed special ed teacher. I use to baby sit for a kiddo with a feeding tube and knew they were not scary. God blessed us with life experiences that helped to prepare us for Jillian. If we have a second child with needs we are even more prepared. We have the doctors and therapists in line and on our team already with Jillian. I know different things to look after having Jillian. If God gives us a second child with medical needs then we will roll with it just like we have for Jillian.

I fully believe that God has this and that He has a plan for good. One of my prayers is for someone for Jillian to have to lean on and for them to be able to lean on her, when I feel overwhelmed wondering about the day to day logistics I think about how blessed these two child are to have each other.

One of my biggest fears about sharing our news is how people will react. I know it seams trivial and childish to be worried about what other people think but to be honest we all are. The fears of if people will think we are crazy, if people will think we are being irresponsible, the fear if people will think we are not looking out for the best for Jillian by having a second. And as I have wrestled with this (and am far from perfect in giving up the fears of what other people think) and God has taught me that what matters is His plan for my life. The choice to have a second child is not one that was made lightly, and while it may seam sudden to you has been a long journey full of a lot of lessons. None of us are perfect but by trying to follow God's perfect plan in our life we can go a long way. I felt really at distant with God for a while, when you are wrestling someone you don't necessarily have the warm and fuzzes about them, but I can tell you that the moment that pregnancy test said "pregnant" I felt closer to God then I had. God is in this, He has a plan, I am fortunate enough to be a part of it, some people will say I am crazy, but it is God who matters at the end of the day.    

Our life will be different with two, but bring on the different. I am excited to get to meet this little one and blessed that God has chosen me to be this baby's mom. I am so honored.