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?

Fun! 

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.

Friday, July 21, 2017

Double Trouble

It seems like I go on spurts of posting and not posting on the blog, I always try to be more regular but... life happens. Like the birth of Isaiah's second little sister, Ilana Gabrielle! She arrived on May 10th and she is just the cutest little thing! Isaiah loves her already and the whole family seems to be getting on well and adjusting to our new, even more hectic, life!

Ilana (or Lani, for short) is a practically perfect baby. She is generally content; she sleeps decently at night, only waking for a feeding or two at most and falling right back asleep.  She's already to the smiling and cooing stage. Isabelle already helps me out by entertaining her or bringing me things she thinks she needs. And Belle is also becoming better at entertaining herself. Although she does, on occasion, get into trouble just when it gets a little quiet in the house.

We are so blessed!

Ilana on the day of her Baptism.

The proud big brother.
Belle, practically all grown up! 

Lani being cute, as usual.

Wednesday, March 29, 2017

Sleep? Who Needs It?

Sleep has been a luxury we can't afford in our house lately. Going all the way back to his hospitalization in October/November, Isaiah hasn't had more than a few good nights of sleep each week, and sometimes less than that. We've been to every doctor that could possible help us with no insight as to why it is happening. We've tried many medicines and tricks to get him to sleep, but nothing works. So we are tired parents...

As I mentioned previously, we were sent home from the hospitalizations with a pulse oximeter. A glorious little device that tells us the saturation of oxygen in his blood, which we need to keep above 90 percent, and his pulse rate which needs to stay, roughly, between 55 and 140. If it gets outside of these parameters, an alarm will go off, and we will need to go check on him. Now why we didn't have one of these sooner, I'm not sure. It seems like a common thing for others with similar diagnoses, and it seems pretty important.

He used to take two medicines to help  him sleep. He had weaned off one of them in the hospital, and when we came home we noticed he just wouldn't sleep anymore. So we started him back up on a smaller dose. Well the second night we administered it, his pulse rate was so low, it was in the 40's. Although he was breathing fine, and his oxygen was normal, we worried and called the hospital, who advised us to call 911 because we couldn't wake him up. Good news: police, fire, and paramedics were in our house within minutes. Bad news: Isaiah had a ride to the hospital. He ended up being fine, but we decided we were never giving him the medicine again. However, we have no idea how long that had been happening to him, as we would have never known he had a low heart rate, and just thought he was sleeping great in the past. Scary, huh?

The second medicine that helped him sleep ended up making him cry every night when it wasn't taken in combination with the first. We went through about two weeks of adding and subtracting things, taking him to the GI doctor, etc. before we figured that out. He would scream at the top of his lungs for no physical reason we could see, and his heart rate would be setting off the high alarm. Once we took that out, he was comfortable and didn't cry anymore. But, he didn't sleep well either.

Now, sometimes he just wakes up throughout the night and makes enough noise to keep us awake. Sometimes his oxygen or pulse monitor is going off, and we need to run into his room and make adjustments. Sometimes he is crying. Sometimes he is laughing, hysterically, in the dark, for no apparent reason. But he has a very hard time just getting rest, and that means we have a very hard time getting rest. We are trying to up one of his comfort medications at this time, and it seems to be helping, but it is a slow increase so we will see how it goes. Fingers crossed...

Now, we know that babies = lack of sleep. Duh. But when we decided to have another little one added to the family, Isaiah was confidently sleeping through the night. Every night. So the thought of adding another non-sleeper to the household is making me anxious. I'm sure we will get through it, and everything will be fine, but it's not going to be easy. So for those of you that see me on a regular basis, please extend some grace my way. And forgive the fact that I may look like I just rolled out of bed...
Belle entertaining Isaiah with his Squigz. 

Isaiah loves his baby doll.
It's one of the things he requested with his Tobii Dynavox. 

Isaiah clearly not impressed with me taking his photo.

Isaiah in his stander. Pretty happy guy. 

Isaiah getting in some sleep when he can.
This was after he got home from school on a cold winter day.