Monday, December 4, 2017

Santa! I Know Him!

Isaiah and his sisters got to see Santa not once, but twice this year! First, HopeKids had an event called Cookies with Santa. They held it at GameWorks. All the children who attended got to play unlimited games, and there was bowling and donuts and coffee and cookies to decorate. The Santa was super sensory friendly, although, the environment was not. We didn't last too long but got to get our picture taken with Santa. Belle told him she wanted cookies and candy for Christmas. Yay.

Then, John's work had a Santa breakfast that they put on every year. They got another picture with Santa and got to have a yummy breakfast. Belle was in heaven here, breakfast is her favorite meal of the day (just like her mom). I've given up on ever getting a picture of all three of them looking at the same time, but they all turned out pretty cute anyways.

I hope you all have a very Merry Christmas and Happy New Year. Or, Happy Holidays if you don't celebrate ours. Here is our holiday card as well.

I think Isaiah and Santa have a secret.
No one looks pleased. But these kids are still adorable! 
From our family to yours. 

Thursday, November 30, 2017

Still No Sleep

Mr. Isaiah is still not sleeping well. He hasn't slept well for well over a year now. We're not exactly sure what else we can do for him, and he is keeping the rest of the house awake.

Luckily, the girls' room is downstairs and they aren't too affected by him. Belle can sleep through pretty much anything so she's about the only one that ever gets a good nights sleep. Lani has been sleeping through the night for a while now, but she occasionally hears Isaiah and wakes up.

I honestly don't know what it feels like to be well rested anymore. It's very draining for John and I. Let alone Isaiah himself! I don't know if he is in pain or if it's neurological, but almost every night at 3 am or so he wakes up and he is either crying or laughing uncontrollably. Sometimes even earlier. He also coughs every time he wakes up from his drool pooling overnight so it's usually the case that he's up for the rest of the day at that point.

We've already seen every specialist we can. Sleep medicine, ENT, pulmonary, endocrinology, palliative, physical medicine, orthopedic, etc. So far, no help in the sleep area. We're following up with sleep medicine this week. As you may remember, both meds the tried for Isaiah so far had terrible side effects. We shall see what they have to suggest this time.

Isaiah stayed home from school all week with pneumonia again. And again, we have no idea where it came from. This is causing him to cry on an off all day long. And be on oxygen 24/7. It's so hard to keep everyone entertained at home. Hoping he gets better over the weekend and can get back into his routine on Monday.

Waiting to see a happy face again...

Thursday, November 16, 2017

New Chair

Isaiah recently got a new chair, called the Chill-Out Chair. It's a therapeutic chair for kids with special needs. It is molded to hold them in, without having to adjust them. It comes with an ottoman and a head rest, and appears to be the most comfortable spot Isaiah has in the house!

It's been something we were looking at getting for a while. It is so important to have a safe place for him to sit. We can put him on the couch, but he tips over every couple of minutes. He can't really lay flat on the floor, and it's really hard to pick him up from there. We also have a papasan chair for him but that was also hard for me to get him in and out of it.

The unfortunate thing is that chairs for children with special needs are SO EXPENSIVE. The chair is basically a large piece of foam that is covered with a waterproof liner and then upholstered. The upholstery can be removed and washed, which is nice. But the chair itself was a big investment.

It is worth it though. To have a place for him to sit and be comfortable, besides his bed and wheelchair, is amazing. It's something we "normal" people take for granted. Imagine if you had one chair to sit in the entire day. Ouch. We also took the chair camping, and it was comfortable enough for him to sleep in. I think he loves it!

The day he got his new chair! Look at this sneaky smile. 

When you have little sisters, you have to share. :-) 

Thursday, November 9, 2017

Tooth Fairy

As a mom to a special needs child, one who will never be able to take care of himself or any of his daily needs, it's so hard to see him growing up. It's also physically and emotionally challenging. I want so badly for him to stay little forever.  But we all know that won't be the case.

At six years old, Mr. Isaiah is over three and a half feet tall (getting an exact measurement is almost impossible due to his muscle tone). He weighs about 55 pounds. And he is not exactly helpful when you want to move and transfer him from one place to another. It's getting hard on me as a caregiver to move him, change his diaper, and even just snuggle.

Isaiah is about to lose his eighth tooth any day now. The tooth fairy has been super busy coming to visit him, especially this last month or two. One went MIA, we still haven't found it. His smile is so adorable though! These little milestones are truly bittersweet. Any reminder to me of him growing up is both a blessing and a challenge in life.

Isaiah talking to his littlest sister.

Look at the toothless grin! 

Thursday, November 2, 2017

Happy Halloween!

I couldn't resist sharing some pictures of the kids in their Halloween costumes. They were some majestic creatures! Our plans included trick-or-treating last weekend at the zoo, which didn't last too long because Isaiah usually gets upset when we go there. He was crying and we left early, which ended up being ok, because Lani had a pretty big accident in her unicorn outfit, haha. Just our luck.

On Halloween it was pretty cold out. Being Isaiah can't control his body temperature well, he didn't get to go trick-or-treating outside. He stayed home and handed out candy in his dragon costume instead. Lani is also awfully little for the cold, so she stayed home and fell asleep in her costume.

Belle got to go trick-or-treating for her first time ever. Last year Isaiah was in the hospital, so we were too. She was so funny! She would knock on the door, and if they didn't answer within 5 seconds she would say "HELLO?" She had her "Trick-or-treat" down pat, as well as her thank you. Occasionally she would throw in a few extra "Happy Halloween" and as soon as we left she would say "More trick-or-treat?"

Isaiah the dragon! Roar!

At the Zoo

Halloween night

Unicorn #1
Unicorn #2

Wednesday, October 25, 2017

The Camper

We FINALLY got a pull-behind travel trailer for the family. This has been something we've been thinking about for a long time and we just did it. It is going to make camping SO MUCH EASIER!

Traveling is a big challenge for our family. Even going camping this summer and staying in a cabin, we had to pull a 5x8 trailer for all the things we need. That's after having a full-size Yukon XL. Plus the constant packing and unpacking of all his medical equipment, trying to keep his medications cold, and sleeping arrangements were a nightmare, not to mention trying to shower in a campground bathroom. We were waiting all summer to hear if Isaiah was going to be granted a camper as his "wish" that he was approved for. Unfortunately, it didn't work out. So we decided to purchase one ourselves.

We took the camper for it's maiden voyage last weekend, just for one night. Unfortunately, it was our first and last trip for the year, as the forecast shows temperatures below freezing the rest of this week and weekend. We pulled it home and got it cleaned up and ready for winter already.

Our camper has double bunk beds, a full bathroom with a shower, tub, toilet, and sink, a dinette that is convertible to a bed, a full kitchen with stove, oven, microwave, and sink, a couch that converts to a bed, and plenty of storage space. It has enough room that we can bring Isaiah's lounge chair and use it to transfer him in and out without having to pick him up and carry him in and out. We have pretty much all the luxuries of home in our home away from home. Which is exactly what we needed for taking trips.

Camping was something that John and I shared a love for long before we had children. To be able to continue traveling and make new memories for our kids now is such a blessing. I can't wait to see what adventures we will go on next spring, summer, and fall. It's going to be a LOOONG winter!

Our new home away from home!

Little sister is soooo excited to have the top bunk!

Isaiah snoozing away in his chair.

Good morning shenanigans. 

Adorable smile with the cutest photo bomb.

Thursday, October 19, 2017

Communicating Here and There

Remember how Isaiah got his Tobii Dynavox a year ago and we were so excited that he was saying a few things on there? Well that's about as far as we got.  It was amazing at first how well he caught on and was using his eyes to focus on words and phrases to tell us. We were finally communicating with him in a way we never thought we would.

Since that time, Isaiah hasn't made much progress. When we turn it on, he doesn't say much at all. He will still make some choices occasionally but he isn't initiating communication like we hoped he would. But everyday we send it to school with him in hopes that they will be able to help him and make it click. His teachers say he is saying some things there, so maybe he just doesn't want to talk to us, haha. He knows we know what he needs, most of the time.

It's a good thing his bus doesn't pick him up until 9 am...

Wednesday, October 11, 2017

The Big Kindergartner

Isaiah started kindergarten last month. Not only does he go to school 5 days a week, he goes to school ALL DAY. He leaves on the bus at 9 am and doesn't get home on the bus until 4 pm. That leaves Belle, Lani, and me with a lot of girl time during the day. We miss him though!

It has certainly taking some adjustment for Isaiah to tolerate the full day of school. Only this week, over a month in, has he adjusted his sleeping schedule to remain awake during the day and sleeping during the night. For the first few weeks he would be so tired he'd nap after school and then wake up between 1 and 5 in the morning hollering like he was ready to start the day. Ok for him maybe, for the rest of us, not so fun.

Isaiah is loving the library at school, he's always super excited to read the books he brings home.  He loves making art work too, as he is so proud when we pull it from his backpack and talk about it. According to his teacher, he also loves music and sharing stories with his kindergarten class (we write what he did over the weekend and they help him tell the other kids).

His teacher this year seems great. She sometimes takes pictures of him at school and sends them to me. All of the pictures below are from her. I appreciate this more than anything because I know he is happy and having a great time at school.

A picture of him in his classroom on the first day of school. I absolutely love this one!
Isaiah celebrated his birthday the first week at school. 
His teachers and some classmates made him birthday cards. 
They said he really loved this musical toy! 
Enjoying some standing time in his classroom.

Thursday, October 5, 2017

Isaiah is Six!

Isaiah turned six years old last month. Can you believe it? We wanted to do something special for his birthday. He really enjoys trains, so we had a train themed party. Isaiah and his sisters had a really fun time.

He even got a model train for his room from grandma and grandpa. The kids loved setting it up and watching it go around. It makes train sounds and puffs smoke too, so realistic. It's our goal to find a spot in his room to set it up so he can just wheel his chair up to it and play. Another thing that we contributed to for his birthday is a chill-out chair. I'll post more about that when it gets here, can't wait!

Here are some pictures from his party. Excuse my amateur cake decorating skills...

Six years old!
I think he wanted to be the conductor.

Are you sure this is necessary?


Thursday, September 28, 2017

Road Trippin'

This July we took a road trip to the Black Hills with the whole family, including Grandma, Grandpa, and Aunt Kacie. As you probably know, the Black Hills and Custer State Park are one of John and my favorite places, and we try to make it out there once a year. This was the first time as a family of five. Lani was two months old at the time. 

The trip went really well! We stayed in a cabin at the campground, while the grandparents stayed in their camper. We normally don't go in July, so it was a little hotter than we like it. But still very fun. We all got to go to Mount Rushmore, Custer State Park, and took a day trip through Bear Butte State Park and Deadwood. We didn't do a whole lot of walking, because it was so hot and Isaiah overheats easily (as would the baby). 

While we did get to do some really fun activities, we also kind of mourn what we aren't able to do. Most hiking trails aren't wheelchair friendly. Hiking used to be the activity of choice for John and me. Now we rarely get to do it. Also just worrying about the temperature and crowds is something we wouldn't have had to think about before; now it prevents us from doing a lot of activities. We used to love fishing, but for any family with small kids that can be a challenge. 

But no matter what, we will always take these trips as a family. It's so important to spend as much quality time together as we can, because we never know how much time we have. I love my family and I love making new memories with them! Here are some pictures from our trip! 

Hanging out in the camper.

Belle's buddies.

In the camping cabin.

Mount Rushmore

All my cuties. 
Lunch by the lake.