Family Vacation

A couple of weeks ago we set out on a family vacation to the Black Hills in South Dakota. ROAD TRIP! We were a little worried about taking Isaiah on a 10 hour drive, but he did really well. John and I had gone out there every year we were together, except for this last year when Isaiah was still little and in and out of the hospital, so we were overdue. The Black Hills are our favorite place so far. We had so much fun and we are already looking forward to our annual trip.

We left early in the morning (or late at night, depending on how you look at it) and got Isaiah into the car while he was still sleeping. He slept for the first five hours or so of our trip. When he woke up, we were able to keep him entertained with his DVD player. Although I did get a little sick of the sing-a-long songs. We had plenty of breaks and made it there in about 13 hours, including our stops in the Badlands and Wall. This was the first year that John's family came along with us. We all kept Isaiah busy, and we had a blast with the whole family.

We stayed in a cabin in Custer, SD, which is close to Custer State Park, where we spent the majority of our time. We saw thousands of animals there, including buffalo, pronghorns, burros, bunnies, elk, and tons and tons of deer. I would take this over the zoo anyday. It's so nice to see the animals in their natural habitat. It's our dream to be able to go hunting out there someday.

Friends

In the last two and a half years, my life has changed so much. When you become the mother of a special needs child, you really find out who your friends are.

Prior to my pregnancy and Isaiah’s prenatal diagnosis of HPE, I had several good friends from high school and college that I would see, even though I lived about an hour away from most of them. When I learned that my baby to be was diagnosed with a potentially fatal condition, I grew up very fast. I matured emotionally and especially in my faith. I learned what is really important in life, and realized there are many things that we take for granted every day. From that point on, I vowed to be a better person and to really be grateful for all of the things I have.

After having Isaiah, I realized that time is the most precious resource. Not only did I have a newborn baby to take care of, which is time consuming enough for any mother, I also had one that required multiple weekly appointments and constant attention. Even now that he is almost two; he still requires constant attention and several appointments each week. Between this and working a full time job, I’m lucky if I have time to clean the house or get our laundry done.

Unfortunately, this means that some of my friends who weren’t tied down wouldn’t really understand where I was coming from. I could no longer pick up on a whim to go see them when they thought it was convenient. If I wasn’t able to plan something in advance, it usually didn’t work. I haven’t spoken to one of my best friends from high school for over a year and a half because of this. She never really understood my struggles, and she got offended that I couldn’t meet her whenever she wanted. It makes me sad to know that, even though I try to be a good person, she won’t accept me and she won’t understand how I have changed for the better.

I feel like I’ve also lost touch with some friends simply because they don’t understand my lifestyle. Because of Isaiah’s special needs, and the fact that my life pretty much revolves around him and these needs, they find it hard to talk to me. I’m not sure if they don’t want to offend me by asking questions, but those that I’m not as close to don’t ask much about Isaiah or our lives, and without that, there’s not a whole lot to discuss.

But on the bright side, I have also made a lot of friends. I’ve met friends that understand my life and that don’t care that Isaiah has special needs. I’ve met friends that do ask questions, and that genuinely want to spend time with Isaiah, John, and I. We’ve made friends that are willing to go above and beyond to help us out, and to schedule around us for a change. I am so grateful for the love and support that our new and old friends provide our family.

Time is a precious resource. I try to make time for all those that I care about. But through all this, I have learned to surround myself with those that genuinely care about me and about my family. It’s important to be with those that are a positive influence when you are going through times that are tough. 

Isaiah's Dreams

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.

So Big!

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!

Family Time

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?

Good Nights and Good Mornings

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.

Surgery? No Big Deal...

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…

Busy Guy

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.

Pics

New Steps

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