Getting Ready and Feeding

We've been extra busy lately working on our house and getting ready for the arrival of Isaiah's little sister next month. We've been shuffling around in the house a lot. John re-finished our basement to turn it into our master bedroom, and it looks amazing. I am so lucky to have such a handy husband. Then we turned the large upstairs bedroom into a nice big room for Isaiah. He has tons of room for all his equipment and supplies, and it's decorated just for him. He got a nice mat to do his therapy and stretches on, and he even has a couch in there for his guests. Baby will have the smaller bedroom upstairs, and we painted and are re-decorating that as well.

Isaiah has been working on feeding at his speech therapy appointments. He seems really motivated now to try new things and to eat, especially when he sees us eating. As you know, his swallowing is weak, so he still has trouble with gagging and coughing while he is eating. But it's not discouraging him, and he is getting stronger every day. Even if it's only a little tiny bit of his nutrition, I'm happy to try whatever we can to help him. He is doing so well and getting so much joy out of it.

Medical Update

Isaiah continues to be healthy and strong. We are fortunate that he hasn't had a major cold yet this winter. He's had a few sniffles, but nothing we weren't able to handle and treat here at home. 

Isaiah had struggled with his muscle tone about three months after he had his botox injections in his arms and legs. His startling picked up and he seemed like he was more uncomfortable than normal. His doctor determined that it was because the botox was wearing off, so he had more injections. They lightly sedate him so it doesn't hurt, and the sedation wears off quickly. The injections helped him greatly and he is back to his happy comfortable self. We know these will need to be repeated about every four months, but the procedure is easy and the results are great. 

Having cerebral palsy puts kids at a high for hip dysplasia. Unfortunately, Isaiah's last x-rays showed that this has started to develop. They've been keeping an eye on it for a long time, but it is finally becoming an issue. He has a follow-up appointment in three months. It is likely that he will need surgical intervention, which requires a hospital admission and then a cast on his lower body for about six weeks. 

This breaks my heart. The thought of putting him through surgery and him sitting in a cast for six weeks makes me so sad. But in researching the issue, I know it will be good for him in the long run. Studies show that kids who have surgery earlier have better outcomes later in life. However, the surgery is not a permanent solution and it may need to be repeated in three to four years. It is something they will need to monitor and treat for the rest of his life. 

I do know Isaiah is strong, and that he recovered well from all of his procedures in the past, so I know he will make it through whatever he needs to do, and he will probably have a smile on his face. As his parents, John and I will do whatever it takes to maintain his quality of life and keep him healthy, happy, and comfortable. I love that little sweetheart more than anything in this world. 

Big News

Isaiah has an announcement to make... 

We are expecting his baby sister on February 25th. 

John and I went to the maternal fetal medicine clinic for a level 2 ultrasound today. We heard nothing but good news. Our baby looks healthy and there is nothing to worry about. Not that we would love her any less if there was anything wrong. We decided long before we went in that the ultrasound is the only test we would do, and we were prepared for any outcome, good, bad, or in-between. Every baby is a blessing, and we are all looking forward to adding a new addition to our family.

Third Birthday

Blowing out the candles.

Tasting a little cake.

Reading some birthday cards.

It's a little belated, but Isaiah celebrated his third birthday earlier this month. We had a fun party for him, featuring his favorite Mickey Mouse! We couldn't have had a more beautiful day to celebrate with family and friends. Isaiah is pretty lucky to have so many people who care about him. 

Time sure does fly. I can't believe it's already been three years since we welcomed this happy little guy into the world. Everyone comments on how big he is. And he has quite the personality. He is truly a light to those around him, and John and I are so lucky to be his parents. 

Our Little Boy Is Growing Up

Little Isaiah started school this week! And in four more days he will be three year old! Man time is flying by. It seems like just yesterday we were bringing him home from the hospital. and now he is such a handsome little man.

Isaiah goes to school at the early childhood learning center in our school district. He goes to a small classroom with five other children in it. They all have varying disabilities. There are as many adults in the classroom as there are kids, and they do all kinds of fun activities and therapies with him. He goes three days a week for two and a half hours.

Isaiah even gets to ride the bus to and from school. He loves the bus ride so much. He gets to ride up in the lift an look out the windows. It is probably one of his favorite things about going to school. There are a few kids on the bus both ways, a driver, and an adult who helps them out.

For the first couple of weeks, Isaiah's PCA gets to go with him. It makes us feel a lot better, because we know she will make sure they know how to take care of him and she can answer any questions they may have, both on the bus and at school. She says that he has a lot of fun and enjoys being with the other kids his age.

Don’t Let It Get To You

Isaiah is pretty lucky; it seems wherever John and I go or whatever we do he gets to come with. We rarely go anywhere without Isaiah. And with his van and wheelchair, it is so easy to bring him with us. He goes to the grocery store with us, shopping, out to eat (where he always gets a little taste of whatever we are eating), and to anywhere else we may go.

Throughout any field trips we may take, Isaiah usually has his big smile plastered on his adorable face. He is happy to be out and about, doing whatever it is we may be doing. Isaiah looks at the world with those big, innocent eyes and takes everything in. He doesn't judge anyone, and he thinks everyone should be his friend. What a world we would live in if everyone were so kind.

Which brings met to this point: adults, as well as children, can be cruel. Although Isaiah is still small, we have to deal with dirty looks and hushed remarks a lot of places we go.

First, the kids. Smaller children usually just have no filters and don’t mean to be cruel when they ask questions, but it still stings. We hear kids ask their parents all kinds of questions. “Why is that kid in a wheelchair?” “What’s wrong with him?” “Why can’t he walk?” “Why is he wearing gloves?” Most of the time the parents just tell them to shush, which, in my opinion, is not the best way to do it. They get embarrassed. It’s not embarrassing: this is the way God made him.

While their questions are just out of pure curiosity, it still hurts a little. So do the stares. Last week we literally witnessed a little girl walk smack into a wall because she was too busy staring at Isaiah to watch where she was going. Isaiah is a person, just like you and I. He doesn't need to be treated any differently. Although, again, with kids it is just out of curiosity most of the time.

But the adults: seriously. Learn some respect. The last thing I want to be bothered by while standing in line at the grocery store is watching you stare at my kid with a wrinkled up, dirty look on your face while Isaiah is just smiling at you. Smile back at him. Show some courtesy. Say hello. Give him a wave. He lives for this interaction, but sadly, most people won’t even acknowledge him.

I say most people because there are still some wonderful strangers in this world that know how to be kind to everyone. Isaiah loves it when someone approaches him and smiles or waves at him and says hi. It makes his day. He is adorable; feel free to look at him all you want as long as you are interacting with him and not giving him a dirty look.

At the end of the day, all I can say to myself is “Don’t let it get to you.” There are kind people, and there are cruel people, everywhere we go. I am confident in our parenting and in all that we do for Isaiah and those rude strangers who don’t know our story have no right to make me feel bad. We have bigger fish to fry.

Summer Fun

It has been a busy summer! I can hardly believe it's already a week into July. Where does the time go? We've been staying busy this summer, spending lots of time with our friends and family. I've been trying to find fun things to do with Isaiah that are engaging and that he can participate in.

One of our favorites is going to the zoo. Isaiah's face lights up when he gets to see animals up close. He really loves the big aquarium, the bears, and the monkeys. The first time we walked away from the monkeys I told him to say goodbye and he started pouting and had a tear in his eye. What a goof!

Isaiah also enjoys spending time in the water. He's always loved his baths. We were recently able to get in the pool at Grandma's house and he thought that was pretty awesome. I found a pool therapy float for him that goes around his neck to keep his head above water while he can freely move his limbs. He didn't mind the float, but it was a little big for him and therefore couldn't be trusted to hold him up on it's own. Still helpful though. We'll have to try it again soon. We would have tried the lake last weekend, but it was chilly and Isaiah doesn't appreciate being cold and wet.

Isaiah loves to ride Grandpa's four-wheeler. As soon as he hears it start up, his legs go flying and he screams and giggles. We have no choice but to take him for a ride. But don't worry, we hold on tight, don't go far, and drive really slow. He thinks it is one of the greatest things on earth. He doesn't stop smiling and laughing the whole ride.

Isaiah may not be able to do as many things as other kids his age, but his joy for life and true happiness make up for any physical disabilities that he has. We are so blessed to be Isaiah's parents and we thank God for this special blessing every day of our lives.

New Home

We made it into our new home! It's been a couple of weeks and we are about halfway settled in. Our main living level is livable, so we can take our time organizing the basement. We are loving this little rambler! The floors are hardwood and tile in the upstairs, so we don't have to worry about his wheelchair tires messing up any carpet. It's so nice to be able to put him in his chair and wheel him around the house as you go about your day, because he really likes to be wherever you are. We added a ramp in the garage for now, until we get a permanent one built in the front.

We decided to take a little break from therapy for the summer. We have learned a lot of things that we can work on at home, and it is nice to not have to run to multiple appointments every week. He hasn't made too much progress lately, so we hope that talking a little break and working on what we know for a while will help him later on.

Two More Weeks

Well, it's official. We will be moving in two weeks, pending that the closings go well on our current home and our new house. We aren't going far, just a few miles away into a house that will work better for Isaiah. We haven't really started packing yet; it's really hard to find time to do it and I'm not super motivated. I'm really excited for it to be over though!

Isaiah is doing well. We've been working on using switches for communication. He has a button he can push that says "more" and another that says "all done" so he can let us know what he likes to play with. He is getting better with practice and is able to get his arms to push the buttons about half of the time that we use them. You can tell he gets excited when he does it, which is super adorable. It's easiest to do this in his wheelchair, which we can't get in the house now, so it will get much better after our move.

Spring Changes

We are in for some changes this spring. Based on the fact that Isaiah's wheelchair isn't going to work in our house, we decided to put it on the market. Which means we will also be looking for a new house that will work for Isaiah. Isn't he a lucky boy? New house, new van, all just for him. I'm a little sad because I love my house and neighborhood now. When we moved here, I picked it because I thought I wouldn't have to move again for a long time. Just goes to show how one special little guy can change your entire life. I would do anything for him.

While we are used to being stressed, the stress of selling our house takes a normal stress level and multiplies it by 100. We have to have it constantly picked up and clean, we have to leave for showings, and now we have had a couple offers and had to go through inspections and the whole deal. We are waiting to hear back on it still. I just want to get it over with. Moving is also stressful and I just want to get settled in somewhere that Isaiah can be mobile and our live can be easier.

Here's a pic of the cutie to tide you over until next time.