A Long Time Coming

 Warmer days are coming, and boy is Susie happy about it! She is spending a lot of time outside and on the trampoline or playing with bubbles! 

Susie played soccer!

Susie has been loving the trampoline. 

Susie saw some dinosaurs.

We had Susie's parent teacher conferences this last week! She is doing so well! I am going to share some pictures of all the exciting things she has been doing at school!

She loves to build!

Motor play! 

Coloring! 

Watering the classroom plant! 

We also got a surprising, yet expected phone call on Tuesday April 9th at 3:00 (this part is important for the story). We have been waiting on this phone call since late August, so when I saw "children's mercy" on the caller ID my heart stopped! They were calling to finally schedule Susie's behavioral evaluation, in which we will hopefully get answers as to what causes Susie's delays. Their first available appointment is Monday, April 15!! I was shocked, we waited so long, and now we don't even have to wait a week! 

We have to be at the downtown Kansas City Children's Mercy location at 8:30 am. The evaluation will take around 4 hours. I know it will be a long, emotional day, but we are ready for answers and to move forward with her learning journey! We will not get results until April 23rd, through a tele-health conference. 

We ask for prayers for all of us on Monday. Please pray for patience for Susie. Emotional stability for me and Ty. Informative and knowledgeable doctors, and most of all please pray that we get answers that help us move forward and learn about how to help Susie continue to thrive. 

Life Update!!

 Hello friends, 

We have been MIA, but not for lack of action, we have been busy. We have been sick on and off for about three weeks now. We have had our share of many illnesses, including the stomach flu, Flu A, upper respiratory infection, hives, and sinus infections. It has been a rough month, but Susie has made some huge strides. Susie has done many new things this month both at home and at school. 

Don't wake the beast! 

Another dr visit with daddy! 

So sick!

Fell asleep watching birds! 

I have struggled with the correct term to use when comparing Susie to other children her age. "Normal" is not the correct term, because in her own way Susie is perfectly normal. While speaking to a friend, she used the terms neurotypical (The word “neurotypical” describes someone who thinks and processes information in ways that are typical within their culture. They tend to learn skills and reach developmental milestones around the same time as their peers), and neurodivergent (The term “neurodivergent” describes people whose brain differences affect how their brain works). She also said, "this is Susie's world, and you just have to figure out how to navigate it with her."

Many things that are difficult for Susie, come easier to her peers that are neurotypical. As I mentioned earlier, Susie has been sick, which means the Doctor, which Susie despises. It is awful to take her to the doctor. However, at her last appointment Susie did pull the Doctor in for a hug. If you think the doctor visit is rough, just try giving her Tylenol or an antibiotic. If you are looking to lose a finger, go ahead and brush her teeth. Don't even think about sharing a bag of chips with her, because she licks all the seasoning off and puts them back in the bag. Turning on the shower used to send her into an absolute tantrum, now she will just run and hide, but takes a bath just fine. Sometimes, I am guilty of focusing on the things Susie doesn't do, or the things she should be doing. However, when I keep my focus on what Susie CAN and DOES do, it amazes me. 

This year we signed Susie up for soccer. I knew it would look different for her, and she has yet to participate in a game. However, at practice, she goes out there with her peers, and she runs, and plays, and has fun, which is a win in our book. This weekend, for the first time ever, Susie participated in an Easter egg hunt, not once but twice. She picked up the eggs and put them in a bag, which she has never done before. Sure, she brought her own tenderloin, but that's beside the point. On Easter Sunday, Susie participated in Children's Church, which she has never been able to do before. We only had one small donut disaster, but Dad saved the day! Susie also went to Sunday School class, where we colored a page, and only ate one crayon!! She played with a food set, and cleaned up when church was finished. She put together a new puzzle, that was unfamiliar to her. Susie also, enjoyed some time on the outside trampoline, which used to terrify her. 

A sweet friend captured this at children's time!

Pretty in pink!

Sunday school! 

Easter Sunday! 

Trampoline hair, don't care! 

At school, Susie has also started to play more interpedently and is exploring new toys every day. She has experienced a tough phase called dumping, in which she literally dumps anything and everything. She was clearing the fridge, cabinets, table, you name it. At first, it looked cute and fun, but at 1:00 in the morning (late nap) it wasn't cute, and I got out the duct tape. She also struggled with this at school, so they have changed her routine to help her, and she has done really well with it. 

Susie made a fort out of pop cans, and didn't know how to get out!! 

Independent puzzle play at school! 

Lastly, Susie has started asking, no, demanding trips to Casey's. You might be wondering how a child that doesn't talk "asks" for something. Well, Susie is a master at communicating without words. She will get her shoes, and coat and bring them to someone. Then she pulls an adult (usually her dad, he's a sucker) by the finger to the door. She will then lead him to the car and when the door opens she climbs in. If you aren't planning to go to Casey's, your plans just changed because she will begin to vocalize her wishes, quite loudly. The same happens if you try to drive past McDonald's!! 

Talked dad into Casey's! 

Church, Chewies, and Chiefs

Hello everyone! We haven't checked in for a while, but we have been busy, and trying to stay warm (and sane with all these snow days)! Susie has enjoyed getting back into her routine! 

A few weeks ago, I shared with my Facebook friends, but Susie had a huge milestone when she sat through church. It was the first time Susie has been able to make it through the whole sermon without being taken out of the sanctuary. This was huge, she sat with me in the back of the church. It was amazing and we were so proud of her! 

Saying a little prayer! 

We made it through church! 

During this time, Susie was developing a horrible habit of chewing/eating things. She was eating dirt, snow, crayons, rocks, lotion...EVERYTHING. We decided to get her iron checked, it was good. So, we decided that maybe she was doing it because she was seeking sensory input. We had tried a couple of chewies without much success. A chewy is an oral sensory tool that help children that can help satisfy sensory needs. One day her OT at school was having a lot of trouble keeping her out of the snow/mud so they tried a new chewy and she loved it! We bought one for home, and it has been a life saver! We attach it to a clip, and she wears it most the day, she has begun to rely on it more than putting foreign objects in her mouth.  

It looks like she's smoking a pipe, but I promise it's just her chewy!

Susie's teachers also have noticed a big difference in her at school. While playing outside this week, she did not try to eat dirt near as often and played on the playground while using her chewy! She ate a snack of carrots and cucumber, which she had never done before. Also, for the first time ever, she sat on the carpet next to a friend without her special chair that she normally uses. Now, it hasn't stopped her from stealing the butter, cream cheese, and milk from the fridge. Baby Steps! 

Susie sitting next to her friends at school on the carpet. 

Susie also went to a basketball game to watch her siblings and helped at practice one night this week. 

Susie has been a very busy girl, but in her free time she likes to pick out her own wardrobe! 

Susie's preschool celebrated Super Bowl Week! Susie says "Go Taylor Swift!"

Thank you for following along with us on our journey. We are so blessed with the love and support of our friends and family. Susie is one loved gal! We appreciate all of you that take time to read our updates! 

Just a swinging!

 One of my last post talked about Susie's new sensory swing that she got for Christmas. Susie's teachers told me about a sensory swing that she uses at school and I got to researching one that would work for our home and our limited space. Susie does so well with her belt, we were hopeful having a swing at home would help keep her busy and engaged. I found this swing on Amazon that would attach to our hallway. It hangs from a strong metal bar and the swing itself is made of a thick stretchy material. 

The first night we put it up she needed assistance getting in and out and I was feeling doubtful that this was going to have the same affect her swing at school did. Boy, was I wrong. Susie has easily swung 20 miles in this swing. It is quite amazing to watch her, we call it her "circus act." She gets all the way in it like a hammock, or she sits in it like a playground swing, or our personal favorite is when she locks her ankles and swings through the air! It is truly amazing to watch what she can do with her swing. 

For a long time I tried to fit Susie into a mold, especially when it came to buying her gifts and finding toys for her to play with. I tried to get her gifts that I thought kids her age would want to play with. Through this journey, I lam earning that what Susie likes isn't always "typical." However, the more we figure out her likes and differences, the happier she is. 

                                                       

Jumping on her trampoline and playing with her sequin board. 

As if her swing didn't take up enough space, sometimes she grabs every bag of Dot's Pretzels she can find and INSISTS they are right beside her! 

This was a first, she put herself to sleep in the swing! 

Susie gathers random items throughout the house and puts them in the hall with her as she swings. It's like an obstacle course trying to get to the bathroom. 

Birthday Girl!

 Today our sweet girl is 5! Much like the year she was born, we are facing cold winter weather and storms! The weekend she was born in 2019, we got around 12 inches of snow. Most of Susie's birthdays have been delayed or canceled due to snowstorms or illnesses! Luckily, we were able to celebrate a few days early at the Trampoline Park! Susie had a really great time jumping and playing and really enjoyed her cake! Susie gravitates towards red things, so we made her birthday cake red! 

Susie hates fire so we put a candle on the cake but didn't light it!

Notice the pigtails, that's a big step! 

Before her party, we got to put 5 Pennie's in the bank at church! This is a sweet tradition that we enjoy at our church. Thankfully she got to participate, as this weekend church is already canceled due to impending weather. Susie is not much for gifts, and with Christmas just ending, she didn't need much! She was showered with lots of snacks and Pepsi! My sister also made her an amazing fidget blanket that has built in pop-it's.

My mom also got her a fidget chair that spins and she loves it, but I was having trouble getting a good photo of her on it! 

Enjoy some pictures of Susie's past birthdays. 

Ready for Susie Claire to be born! 

January 11, 2019 7:58 am, 7 lbs 3 oz

1st birthday, snowed in at home! 

Susie is 2! 

Silly girl eating some corn on her 3rd birthday! 

Susie did not feel the best on her 4th birthday. This was in the middle of us having many sleepless nights and ear infections before she had her tonsils out! She did get to go swimming a few days before her birthday to celebrate! 

We are so blessed with Susie and impressed daily with her progress. She definitely keeps us on our toes and there is never a dull moment with Susie. We hope year 5 is her best yet! 

Christmas and December update!

Hello everyone! We hope you had a wonderful Christmas season! We sure did! I wanted to write about Susie's Christmas and some things we did to ensure she had a successful Christmas! But first, I want to share a few big things Susie has done this month.

Susie does not do well in environments where she is expected to 1. Sit still or 2. Be quiet. A few weeks ago we tested her at 2 different events in which she had to sit still, and be quiet. The first occasion was at Sally's gymnastics recital. It was a 3 hour long event and Susie had to go. We were nervous as it was going to be a long time for Susie. However she far exceeded our expectations and made it the entire show, only leaving for about 20 minutes to go to the lobby. That same weekend, we took her to a church Christmas program. Susie loves music, so she did well with listening to the kids sing! She was rewarded with a cookie, or 5! 

   Trying her best to be quiet at the church Christmas Program! 

Susie also didn't do the best with Santa the first 2 times we saw him. I got to thinking that maybe she was overwhelmed by the crowd and the lines. The County Library had pictures with Santa, I went hoping it would be a smaller crowd and we could go at Susies pace. It was just that and Susie did amazing and we got a wonderful picture of her and Santa! 

                  

At Thanksgiving, we did a buffet style table. Susie had a really rough day because she doesn't like to share food and tried to take over the whole table. At Christmas, we decided to have a table dedicated to Susie. We laid out a cheese ball (her favorite) chips, pretzels, and croissants to name a few things! Susie did so well with her own little grazing table and was so happy! 

It is hard to buy gifts for Susie, she doesn't care for many things. However when she likes something, she really likes it. We put a lot of thought into her gifts this year and decided to get her some sensory items that she is familiar with using at school. I did a lot of research and found a sensory swing that would fit in our hallway and Nana bought it for her. Santa also brought her a sequin board and a small trampoline. This was the first time that Susie actually showed interest in her gifts! We aren't able to get many pictures or videos of her, as she has kind of sworn off clothes this Christmas break! However I do have a small clip of her in action on the swing which keeps her entertained for hours!