The Great Debate

Since Isaiah had his initial evaluation, we are going to be trialing some wheelchairs in the coming weeks. I'm pretty excited for this! His stroller had been working for us, but as he gets bigger it looks like it is less comfortable. We need something that will keep his body aligned and make him comfy when we are out and about. We probably won't use it at home much. Especially since we have that lovely split level house.

The great debate that comes with the wheelchair is the discussion of getting a new vehicle or two. Right now we have two sedans and neither of them will easily accept a wheelchair. There are some that you can take apart, but it isn't easy and it would be much more convenient to just put the whole thing in the vehicle together when we go places. This leads John to suggesting that we add a minivan to our household.

Now, in my whole entire 28 years on this planet I have been telling myself that I will NEVER drive a minivan. I mean, who really WANTS to drive a minivan? Nobody. They are ugly and lame. There is no such thing as a sexy minivan. I told him the only way that I would drive a minivan is if we filled it up with kids. He did not like that response. I feel pressured.

Do I have a logical reason for not wanting a minivan? No. They are cheaper than a lot of trucks and SUVs and they can get better gas mileage. They are roomy and comfortable. They are easily accessable. They can haul things. They can pull some things. But I CANNOT picture myself driving one.

I'm thinking a SUV or truck will do just fine. I can make it work, right? I can't see why not. I just don't have much of an argument there. I don't know who will win the debate, but I'll keep you posted as to what we decide.

Frustration

So, we all know Isaiah has a lot of medical issues which require A LOT of visits to the clinic. With John and I both working full time, it can be really hard to get him to his appointments. At a minimum, he has two appointments a week between specialists, primary care, and his therapies.

Isaiah goes to one clinic here locally for all of his therapies, physical medicine, and orthotics, meaning we go there once or twice A WEEK. You would think with all of the business we bring them, they could at least treat us with a little compassion when things go wrong. Unfortunately, the staff at this clinic does not see things the way I do.

Allow me to explain. Yesterday Isaiah was going in for a seating evaluation to see what kind of wheelchair will be best for him. John had to take the whole day off of work, because midday is the only time they could fit us in, and we had waited two months for this appointment. So when he called me at work 15 minutes prior to the appointment time, saying his car stalled on the interstate where it is road construction and one lane of traffic. I tried to call and see if we could reschedule. Well, they were booked out until mid January and would not make any exceptions. I asked if they would take us a little late, and they said they could only wait 10-15 minutes. So I rushed out of work, picked them up, and got them there with a couple minutes to spare.

Although we were late, the registration person who I called said she already checked us in. So it surprised me that we still had to wait about seven minutes to be taken back, where they still didn’t have room for us to go for an appointment. Then when we got back there, the woman doing the evaluation (who we hadn’t met before) rudely asked who I was and what I was doing there. Ummm, I’m his mother. If that weren’t interesting enough, I asked why they still didn’t have a spot for us, and she rolled her eyes at me! Luckily I had to go back to work so I didn’t have to deal with her anymore.

Later in the appointment, the orthotist was coming to fix up Isaiah’s orthotics for him that still don’t fit right. Mind you he was fitted for these two months ago, for which we had to wait a month just to get in to the clinic to pick them up only to realize that they still don’t fit right. We waited another month to get an adjustment. He looked them over, said he would be back in 10 minutes, and then they waited for 35 minutes for him to check back in. Not to mention the fact that when we come in, the registration staff has not once greeted us with a smile or made polite conversation. I feel like they think time doesn’t matter to anyone but themselves. I am so disgusted with the rudeness of the clinic staff, their inability to get anything done on time, and how impossible it is to schedule any appointments with them. I like his therapists and physicians (besides the orthotists and the rude seating lady) but I question if it is worth it to continue Isaiah’s care here. Unfortunately, this exhausts the options that are close to us and if we decide to go somewhere else, we would have to drive all the way to Minnetonka or Minneapolis, which isn’t realistic for his therapies.

Where has the concept of customer service gone? I’ve given up all hope of being treated with respect at retail and restaurants, but I would sure hope that in the health care field they could find people that were decent enough to deal with those in vulnerable situations. I work at the hospital that is next to this clinic. I register patients, do admissions, and help with information. We wouldn’t DREAM of treating someone like this. We bend over backwards to make sure the patient’s first impression is a positive one, and do all that we can to help them out. We get to know the patients that we see on a regular basis by name, they know us by name, and we have meaningful conversations with them. We do our best to help them have a good day, because we know that it is tough to be a patient. I think the fact that I am the complete and utter opposite of this makes it hurt me even more.

I’m done venting now. I’m going to keep smiling just because I get to see this adorable face everyday!

Update

I apologize for the lull between posts. Isaiah has been one busy guy lately, as have his mom and dad. But luckily, Isaiah has been healthy.

We are still taking him to therapy once a week. He remains unable to sit up. I am a little bummed out about this, since when he first started therapy a year and a half ago, they said that those who have the best outcomes learn how to sit by the time they are two. But Isaiah will be able to do what he can, and we will be happy with any milestones he makes, big or small.

Feeding remains at a standstill. We tried for so long to get him to eat foods orally. We still give him tastes once and a while, but it looks like we aren’t going to make any progress in this department. He is unable to properly swallow, and he gags and chokes when we try to feed him anything bigger than a tiny taste. This usually causes him to throw up, and it defeats the purpose of us trying to feed him in the first place.

Although he is just on the formula, he is growing at a great rate! He is a healthy 29 pounds, and he is at the 60th percentile in both height and weight. His doctors say he is growing right on track and he looks great. His diabetes insipidus (DI) is under control. He has an evaluation next week to get fitted for a wheelchair, although it will probably be a few months until he is able to get one.

If there was one thing I wish we could control better, it is his muscle tone. He has been arching back so much lately it is getting hard to hold him at all. It’s especially hard to carry him, not only because he is heavy but because he arches back and practically flings himself out of your arms. Hopefully we can address this at his next physical medicine appointment.

Happy Second Birthday Isaiah!

Last weekend we celebrated Isaiah's second birthday! We are so blessed to have made it this far with our sweet boy. Just two years ago we were in the hospital anticipating his birth, not knowing if we would even get to bring him home, and now he is a happy, smiley, two year old cutie!

We decided to have a little party at the zoo for his birthday with our family and some friends. It was actually a very cute party. They set everything up for us and took care of food and drinks, so we could all just relax and have fun. They even brought in some animals for us to look at, and Isaiah loves to watch the animals! 

Afterward, we went on the carousel. For the first minute, Isaiah thought it was great. But then, a combination of the lights, movement, noises, and him being tired made him pretty sad, so he had to have his daddy hold him. We also went to look at the other zoo animals afterward, but Isaiah was so tired he fell asleep.

Where Has Summer Gone?

Even though summer is winding down, it feels as though it just started yesterday. While we did get to do fun things, and take some fun trips, I just don't feel like I got to spend enough summertime with my sweet Isaiah.

I feel like a lot of the reason time is so short is due to Isaiah's demanding schedule. Isaiah wakes up and has his first bottle around 7 a.m., and he eats every three hours thereafter. He takes a nap after his second bottle, and if he doesn't get a good hour and a half in, he gets pretty cranky. Then it's time for his third bottle, a little playtime, fourth bottle, maybe another short nap in there, our dinnertime, then we do bath time, have the fifth and last bottle at 7:30 p.m., and wind down for bedtime around 9 p.m.

Since Isaiah obviously can't feed himself, that means each of the five times a day he eats, we have to be feeding him. It usually takes 20-30 minutes per bottle, as we like to take it slow and make sure we don't upset his tummy. He also has to stay seated for 20-30 minutes after his bottle to let his tummy settle. If he is sick, it needs to be even longer since he throws up more often and we don't want him to lose important medications and nutrition.

When we do go out places, our entire day needs to be planned around his schedule. Isaiah is a generally happy guy, but if he doesn't get the right amount of sleep, or take his nap when he needs it, you will know it! While we've gotten good at feeding him in different places, it is still hard to work everything around his needs when we are out and about.

Don't get me wrong, I am definitely not complaining. There are a lot of families who have things a lot tougher than we do. All I want is for those we care about to understand when we are unable to make it out an event, or when we have to come late or leave early, or take a break for Isaiah's naptime, that it's not because we don't care. It's simply because we have a lot to get right, and our number one priority is our sweet little Isaiah.

Family Vacation Part 2

John, Isaiah, and I got to go on a second camping trip this summer last month. This time we went to Hayward, Wisconsin with my family. We had a ton of fun, got to spend lots of time outdoors, and got to see the sights of northwestern Wisconsin as well as Duluth, Minnesota. 

Isaiah was a very good boy throughout our trip. I am always amazed at how well he does and how much he tolerates our plans and our ideas of fun adventures. As long as he has something fun to look at, or a comfy spot to take a nap when he is tired, he is just fine.

One of the highlights of our trip was the journey through the Hayward Animal Walk. I love Isaiah's face in the picture below. It's hard to tell if he loves the deer, or if he is skeptical about that deer's intentions. It was a fun time nonetheless!

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!