And the Winner is...

A MINIVAN!

Ok, there were way too many pros vs. cons of getting the minivan. Apparently my "coolness" factor doesn't hold a candle to the praticality of the minivan. Whatever. They are kind of badass in their own special way.

A spot of good news for this Thursday morning... we have been approved for a CADI waiver for Isaiah! This means that we will be awarded funds to help us pay to have our minivan modified to accept Isaiah's wheelchair, and we will be able to make some improvements to our house to make it accessible, and it will be paid for on our behalf. We are so blessed!

I can't wait to cruise the streets with my little Isaiah smilin' in the back of our sweet minivan watching Max and Ruby. We haven't picked out our van yet, but we are pre-approved for our car loan so it's only a matter of time. I'll be sure to post pictures as soon as it happens. In the meantime, here is a cute one of Isaiah!

Merry Christmas!

Wishing you a blessed Christmas!

Love,
Isaiah, Leslie & John

It's the Holiday Season

Well I decided I must be getting old this month. I used to LOVE decorating for the holidays. Getting the tree out, putting on all the ornaments, putting out other Christmas decorations and making the house look festive. This year, all I could think about was how dreadful it would be to have to put all these things away after Christmas. And dust and vacuum around them. I might be turning into a Grinch. But we put our stuff out anyways.

We are still working on getting Isaiah a wheelchair. We finally got to try one we like last week, and decided to order it. It’s called the Zippie Iris. It has all the features we really wanted. It’s super adjustable, it has tilt, it has the smaller wheels, and it is relatively compact. It could take up to a month to get the actual wheelchair, and then it could take a month to have the custom seating done. So we still have time to think about the vehicle we will be getting.

Here are a couple of our family pictures from this year (courtesy of Uncle Josh).

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.