Isaiah's Hope

There are many times throughout the day that I wonder what Isaiah is daydreaming about. I know his brain doesn’t work the same way ours do, but I know there are many times where he MUST BE thinking of something. Like when I’m out of the room but I hear him giggling like crazy. What could possibly be so funny? Perhaps he is thinking about our trips to Target and remembering how many TVs he got to see the funny dog on. Seriously, if I parked him in front of these TVs, he would be entertained for hours.

There was also the time we went to Cabela’s, and Isaiah found his dream chair. It was a little recliner, just his size, and comfy as could be. Best of all, it was CAMOUFLAGE! If I would have had an additional $200 lying around that day, I would have bought it for him then and there. But he had to learn that money doesn’t grow on trees, right? That’s what my parents always taught me…

I wonder if he remembers things that have happened. There are many times we get him giggling so hard and that he has such a great time. I know that if I repeat similar tasks, he must remember sometimes, because I feel like he anticipates what is coming. But we can’t really be sure what goes on in that little head of his. I also feel that if he did remember everything, he would be making more progress, even in his motor skills, because sometimes he can take steps or sit and others this is foreign to him. I guess we will never know for sure. But the smile on his face is all I need to see to let me know that he loves me and appreciates all that I do for him.

The bigger Isaiah gets, the more I become aware of how different from “normal” our lives are going to be. Isaiah had his 18 month check-up last week, and he is up to 25 pounds! He is getting so big, and it is getting harder and harder for me to carry him around. Since he doesn’t have good trunk or head control, it makes it even harder. It looks like the next step is to get a wheelchair, which should be interesting in our split-entry house…

We continue to go to three therapies a week. Every day, I hope that Isaiah will begin to make progress. And he is, in teeny, tiny steps. But he still isn’t using his hands to grab things, isn’t sitting, or even rolling over. These things that seem so simple are so hard for Isaiah to do. And it’s not for lack of trying. I know he wishes he could be mobile and sit up on his own, and he tries, but his brain just doesn’t tell his body how to work properly. It’s even hard to position him sometimes now that he is getting so big.

Today, I got to stay home with Isaiah since his PCA and our back-up caregiver are both sick. We decided to go to Target to look around and grab a few things. I had him positioned in the cart with a cart cover and a big blanket. A woman approached me in the main aisle and asked me if I was interested in meeting with a group of special needs moms. And then it hit me: Isaiah is finally to the point that people can tell that he is disabled. I knew this day would come, and I always thought it might make me fell bad. But it really didn’t offend me. In fact, I am pretty excited to meet some other special needs moms from the area!

We’ve had a lot more family time lately, thanks to our new PCA. We were able to hire someone through the agency. She was the first and only person we interviewed, which made me a little nervous at first, but I think we made a good pick.

She is able to come and take care of Isaiah from about 9 a.m. to 3 p.m. This means that I can go to work at a more “normal” time of day! It’s so nice to have my Isaiah time in the morning and then just be able to leave for work without worrying about bringing him out too. She comes in, knows where everything is and what to do, and takes care of him throughout the day.

She even goes above and beyond. She will wash his linens and do his laundry. If he takes a long nap, she will clean his things or organize them. She really is just what we needed to ease a little of our stress and give us some more time together, as a family, at night. Both Isaiah and Duchess seem to like her. We’re pretty lucky, that’s for sure!

Here is a picture of our family time; my two adorable  boys.

Here is a picture I took when I drug Isaiah out to shovel with me on a warm day. I didn’t think he would like it, but he doesn’t seem to mind.

And I captured a picture of the good morning I was telling you about last time. Isn’t he the happiest when he wakes up?

Isaiah has been having some good times lately. His biggest area of improvement lately: SLEEP! I am excited to report that we are now able to swaddle up the little guy and put him in his bed and he will fall asleep on his own. Not only for bedtime, but for naps too. Up until recently we had to hold him to get him to sleep, and for his entire nap, so this is progress! There’s nothing like tucking this little guy in to sleep at night and seeing his super big smile as I kiss his forehead, then seeing him sound asleep a few minutes later.

Isaiah usually wakes up on his own in the  morning. I can hear him moving around in his bed, and some mornings he decides to holler if I don’t get to him soon enough. When I go into his room, I slowly open the door and peek in. He knows I am there, and as soon as he sees my face he gives me the biggest smile. He is never happier than he is when he wakes up in the morning. And we are all happier after a good night’s sleep!

It might seem like a trivial thing, but what might seem like a small battle for others can be a big challenge for a special needs parent. However, we did recently get some good news that will really help us out. Isaiah was approved for almost 40 hours a week of PCA services. This means that we can have a Personal Care Assistant come out to the house and help take care of him. This is going to be a huge help. It will help us to have more family time and for Isaiah to have one-on-one attention. I’m really excited to see how this goes.

Well, Isaiah was still sick for his scheduled surgery, so we moved it back to January 4th. He went in to have ear tubes placed and to have his adenoids removed. While this is a routine procedure for lots of kids, I was worried that he would end up staying in the hospital with complications.

Turns out, it was no big deal for my tough little guy! The procedure took a half an hour, and three hours after that, we were on our way home! He woke up groggy and crabby, as anyone would, but later in the day he was feeling much better. When he woke up the next morning, he was back to his happy silly self! I’m so proud of my little guy for being so tough.

Isaiah had a great Christmas with the family this year. He got some nice gifts that will really help him out. He got a new stroller that will make it easier to get him out and about. He got a trike that he can be strapped in and pushed around the neighborhood in the spring for a change of scenery and some fun. And he got some new toys to keep him entertained. What a lucky guy!

Here are some pictures from Christmas this year…

Isaiah has a pretty busy schedule this month. We have our weekly physical therapy sessions, speech therapy sessions, and occupational therapy visits. He has seen or is yet to see the neurologist, physical medicine physician, endocrinologist, ENT physician, and his primary doctor.

Even with all those, there’s not too much that is new. His progress continues to be slow but steady. He isn’t sitting on his own yet. He likes to stand with his orthotics on, and he has a stander that he can be held in by himself. He likes to look around and play with toys while  he is in there.

Isaiah is scheduled to have surgery to place some ear tubes next week, and while they are at it he may have his adenoids out as well, depending on whether they are large or obstructive. He has a cold now, so we are hoping it goes away in time for this to happen. He’s been pretty cranky lately and not sleeping well, so we are hoping that the surgery and a new medicine he is trying for muscle tone at night will give him some help.

At his appointment with his Physical Medicine and Rehabilitation physician a couple of weeks ago, Isaiah was prescribed a medicine called Baclofen for his cerebral palsy.  This is a medicine that he will take three times a day. It can be taken orally, or in his case, through his g-tube. This medication helps to reduce his muscle tone, or to help him relax his muscles more. With his condition, he is usually extending his muscles as tightly as he can.

I took him to therapy this week, and his physical therapist said she can already tell a difference in the way he is using his muscles. Because the medicine is working to reduce his tone, he is able to move and activate his muscles in ways that his body wouldn’t let him before. She was excited with his progress and happy that he was doing better already. We are gradually increasing his Baclofen until we can find his correct dose, without making him sleepy or making his muscles too loose.

His physician also ordered ankle-foot orthotics (AFOs) for his legs to help him be a little more steady when he is trying to stand. They came in this week. They are camouflage (of course) and totally adorable when he wears them. The orthotist got him fitted, and the moment we put them on and stood him up it was a difference of night and day . Isaiah normally stands on his tiptoes or curls his toes under when he stands, but these prevent that and hold his feet steady. He was able to stand up from a sitting position with a little help. I am so excited. He only needs to wear them when we are working on standing, and he will do exercises with them both on and off to work on eventually not needing them.

These both made me feel really hopeful for Isaiah. I think we are finally taking steps forward, instead of being stuck in the rut that we seemed to be in. For awhile, I felt like he wasn’t making much progress. Sometimes it just takes the right person, or the right physician, to add a new perspective and get things progressing again.

“Take pains with these things; be absorbed in them, so that your progress will be evident to all.” -1 Timothy 4:15

I appreciate your sympathy,
But you will never understand me.
You say you know how I feel,
But you just can’t know unless it is real.
You haven’t experienced my pain,
My baby is different, not the same.

“Mama” or “Dada” he may never speak,
He may never give us a kiss on the cheek.
He may not be able to jump or run,
Or climb in our laps when a long day is done.
Big and tall he may not grow,
But I love him more than you will ever know.

No matter how sad the truth makes me,
This little boy fills my heart with glee.
When I am down and sad for a while,
He turns it around with his glorious smile.
Don’t feel sorry for me, I’m doing just fine. 
My boy has a heart that is truly DIVINE.

I am constantly looking for new activities for Isaiah to do. Since he is not progressing in his abilities like other kids his age, I feel like he gets bored doing the same old things every day. He is not able to move about and explore himself, so we need to find new toys and activities to stimulate his learning. We spend so much time in our days helping him play with his toys because he is unable to grab them or pick them up on his own.

Isaiah’s occupational therapist brought a little scooter over to our house for him to try. It is very small and low to the ground. We are able to put Isaiah’s upper body on the scooter, so just his legs are off the back. It was so cute when he figured out that he can use his legs to push himself around! It took a long time, but we convinced him to roll across the room to me. I think he will really enjoy using the scooter to try and get around. She also brought a toy that is activated with a big button. We are hoping that he will learn that he can make it go by pushing the button to help him learn cause and effect.

He got a swing for his birthday that we can use in the house or outside, which is pretty nice. Since winter decided to come in a fury this week, we have been using it inside. When he swings, he is calm and content. We also try to help him learn “stop” and “go” by stopping it from swinging and waiting until he vocalizes to have us push him again. We have been reading stories and trying to have him turn the page when it is time.

Isaiah tries really hard to do what we ask. I truly think there is understanding there. Unfortunately, because of his HPE, his body and brain don’t work together the way ours do. We can only try our best to help him play, have fun, and learn as much as he can. I can tell by the amazing smiles he gives us that he appreciates it all.