Thursday, January 18, 2018

New Therapy

Isaiah finally gets to try The Vest, an airway clearance system that is supposed to help him move his secretions and hopefully prevent him from getting pneumonia. He either has another case of pneumonia right now or he didn't effectively beat it the last two times we treated for it. So since November, he's been fighting something off.

The Vest seems to be working really well. We had the rep come out and demo it, and he really perked up after the first treatment. Prior to that he had been in bed for like 5 days straight with a high heart rate and low oxygen levels requiring him to be constantly on oxygen. But by the next morning, he was ready to go back to school, off oxygen, and back to baseline for his heart rate.

I'm hoping this is helpful and it's not a coincidence. His vest basically inflates and deflates rapidly, and it almost looks like it's shaking him. He doesn't mind though and smiles through treatments, even as I do his nebulizer at the same time. It even comes in his favorite color, camouflage. Here's a link to their website if you're curious:

Today is his second day back to school, and he seems to be doing great so far!

Quick video (no sound)

He was practically sleeping through it this morning.

Tuesday, January 2, 2018

Happy New Year

2017 is done and 2018 is here! I'm excited for some changes that are coming for our family this year. We have been looking into moving into a house that better accommodates Isaiah and his needs. We just happened across a house that checked of most of the boxes, is closer to our families, and is brand new and just waiting for us to move in! We rushed to put our house on the market a few days ago, and it's already sold pending inspection. That means we're looking at moving in mid-February if everything works out. We couldn't have asked for a better solution.

I am hoping 2018 is a healthier year too. Isaiah just cleared up another round of pneumonia. We all got a cold right after Christmas and of course Isaiah just can't fight it like the rest of us. He was well enough to go to school today though, and his teacher said he was happy to be back. Despite the illness that followed, we had a great Christmas. Hope you all had a good holiday season as well, and we wish you the best in 2018!

Friday, December 22, 2017

Fun at School

Isaiah still loves to go to school. And I love seeing pictures like these from his teacher. He had fun creating art and the last picture shows him trying on some sunglasses as he was sorting items that were worn in summer and winter. Such a ham. She sends me pictures of him with his friends too, it's really sweet! 

Friday, December 15, 2017

Flashback Friday

Flashing back to when each of the kids were seven months old. I love comparing pictures like this! I don't really think they look alike. They are all professional smilers though. And... all bald! I can't believe how much our lives have changed in the last 6 years! Isaiah is on top (obviously), Belle is on the left and Lani on the right.

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.