Thursday, May 31, 2018

Last Day of School

School is out for the summer! Isaiah has a half-day today then he is done for a while. It's a bitter sweet moment here in our household. I'm happy I will get to see him more this summer. But taking care of him all day every day on top of the two girls is exhausting. It's extremely hard to go places and do anything but hang out around home. But we will make it through!

I posted a picture of today, his last day, and yesterday. Mainly to show you the ups and downs of our everyday life. Yesterday, Isaiah was happy as a clam. Today, he wouldn't stop crying before he left. He is an emotional roller-coaster all on his own. Sometimes he cries and cries for no reason and there is nothing I can do about it. Trust me, I've tried EVERYTHING. I've discussed it with every specialist. So we just roll with it.

The trouble with the crying is it's hard to take him out in public. I know it's just the way he is, and there's nothing I can do about it, but the people around us do not. It's embarrassing. We end up leaving places that we attempt to visit because he just can't control himself. Church is a chore and sometimes we spend more time just driving there than we do at mass because he's so loud that we have to leave. Sometimes, we can tell it's going to be a bad day and we just don't go. I wish there was a better answer, but I've learned there is not.

Last day of kindergarten and his pouty, sad lip is making it's appearance. 

Second to last day: happy as a clam. Oh Isaiah! 

Friday, May 25, 2018

Black Hills Accessibility

We made it to the Black Hills and back! We got to explore a few places and had a lot of fun. We also had some hard times. But the good memories will outweigh the bad.

We decided to drive overnight again, as that worked well last year and the longer the kids sleep, the easier it is. Luckily, John doesn't mind overnight driving. He was able to take a nap before we left. We stopped at the Badlands on the way to Custer, South Dakota. We were able to participate in a lot of activities that were handicapped accessible.

The Badlands are worth a stop, especially if you have the lifetime Access Pass to the National Parks for disabled individuals. (Here is a link if you are questioning what that is: https://store.usgs.gov/access-pass) Your car gets in for free without paying the $20 per vehicle rate. There are many hiking paths for those who are able-bodied, but some of the pull-offs have boardwalks that are accessible and still provide amazing views. Just know, it's HOT. It's like a desert here in the north and is usually much warmer than everywhere around it.

Custer State Park has some paved paths for wheelchairs. There are many places to go fishing that you can pull right up to, so Isaiah can participate. The Wildlife Loop road is always fun; and everyone can partake because you simply drive it in your car. The visitor center is fully accessible and has nice restrooms and information. The park has camping, accessible cabins, and all kinds of fun stuff to see and do.

Wind Cave National Park provides accessible tours upon request. They have an elevator that brings you to two areas of the cave. The Park Ranger provides information that you would receive on any tour, and you get to see most of the unique formations of the cave in that area. There is also a couple of hiking paths that are accessible to wheelchairs, including to the natural entrance of the cave. I highly recommend this stop to anyone, but especially to those with disabilities.

Angostura Recreation Area is a South Dakota state park that has MILES of great paved biking trails. We were able to go for quite a long hike, which is what we were looking for. It's a beautiful reservoir that has miles of sandy beaches, clear water, and activities such as camping, boating, fishing, and swimming. There are great picnic areas that are accessible too. I wouldn't mind camping here sometime.

Mount Rushmore National Memorial is also totally accessible. Just know, your Access Pass doesn't cover parking here. The parking ramp has a convenient elevator and everyone can get great views of the memorial.

These are a few of the things we did, but know there is much more to do and see in the area. If you have a disability or are in a wheelchair, don't let it stop you from getting out there and enjoying our beautiful country!

Not paved, but flat enough for a wheelchair and stroller. Path around Lake Sylvan in Custer State Park. 

Isaiah checking out a burro in Custer State Park on the wildlife loop. 

Isaiah and John inside Wind Cave. The elevator brings you down 21 flights in seconds. It's the fastest elevator in South Dakota!

A view from a boardwalk in the Badlands National Park. 

Mount Rushmore. We didn't bring his wheelchair because he was extremely crabby this day, but again, it is very accessible and worth the cost of parking. 

Angostura Recreation Area. Isaiah's dad helped him down to dip his toes in the cool water on a warm day. Beautiful views and crystal clear water. 




Monday, May 14, 2018

Yay Spring!

Spring is finally here and it's getting warm in Minnesota. We all love not having to bundle up to go outside anymore, especially Isaiah! He loves being outside any way he can. On that note, we finally got him a jogger so he can go on runs with John and I. He goes in his new jogger, and the girls go in their double BOB stroller. It's quite the workout, but worth it to make it time with the whole family. John and I have always loved running together, but had to make it a separate activity up until now.

We're gearing up for some camping trips this summer. Our first one will be to the Black Hills again, and we're leaving soon. And since our new home has no required outdoor summer maintenance, we're hoping to make lots of shorter trips this summer too. I'm hoping to find some fun spots that are accessible for Isaiah. And find some more fun places we can put his bike and jogger to good use.

Celebrating Lani's first birthday together in their Mickey and Minnie outfits. 

The jogging brigade. I say jogging because running is a challenge pushing these things...
And this bicycle train is quite the show stopper. 



Monday, April 30, 2018

Hearing Aids

Isaiah got his hearing aids a few weeks ago! We're seeing some positive changes in him, and we couldn't me more happy about that. He is much more attentive than he was before. He is noticing sounds and watching his sisters all the time. He is even less startled when loud noises occur, and my guess is because he can hear them instead of feel them.

School is saying they notice positive changes too. He is more engaged during his classes, and he is more attentive to other children. I really hope this helps him out in other areas of his life. I had no idea that a little thing like this could have such a big impact on him, but I'm happy it helps, even if it's just a little bit. They're not too hard to care for. And the plus, you can take them out when he is overwhelmed.

Enjoying some of the first spring rays of sunshine. 

Lani playing with Isaiah. 


Friday, April 6, 2018

Hearing Loss

I believe I mentioned it a few posts ago, but Isaiah had an auditory brainstem response (ABR) hearing test while he was having surgery to determine the exact amount of hearing loss he has. We were always told his hearing loss was mild, and that one ear could hear just fine. As someone who hasn't experienced hearing loss myself, and not being close with anyone who has, I didn't really think it was a big deal. His doctors didn't make it seem that way either.

After the ABR, we were apparently referred to the state department of health, and subsequently, another advocacy group for those who are hard of hearing. I received a phone call setting up a meeting and met with an advocate who started asking me all kinds of questions I wasn't prepared to answer. A few examples:

How do you communicate with Isaiah?
Do you use sign language?
Do you use cued speech?
How do you know if he understands you?
What does his IEP have in place to address his hearing loss?

First of all, I hadn't even considered sign language up until now. It wasn't until a month ago that I found out his hearing loss was "moderate" and I haven't heard anything since. Second of all, I have no idea if he understands me. Not because of his hearing, but because of all the other developmental delays he has. I never imagined that part of why he isn't communicating is because he couldn't hear me. Lastly, his IEP does address it but they also didn't know the depth of loss or exact measurements to plan for exactly what he needs.

So here I am feeling like a failure yet again. I know all this new information may or may not even make a difference, but it's so hard to think about things from a totally different perspective. I also know that the group deals specifically with hearing loss, and has no idea about the other delays and challenges Isaiah has faced since before he was even born. But throwing something like this at a mom who is already facing so many challenges was quite a blow.

Now my heart is sinking because I'm wondering if we were dismissed by other doctors before. As in, maybe they didn't consider Isaiah's hearing a priority because they didn't have a very good outlook on his future. Or they thought his developmental delays were so severe that they just didn't give him a chance. We have seen over four ENT physicians at three different facilities and it wasn't until the fifth physician that we finally got the ABR done, and it was more of an after thought because he was already having a surgery.

We meet with the audiologist again next week to hopefully get hearing aids to trial, and I am going to have A LOT of questions for her. Wish us luck!

Belle fell asleep while watching a movie with Isaiah. <3

Little Miss Lani holding her brother's hand. <3

Thursday, March 29, 2018

Happy Easter

We're approaching the end of Lent. I feel like I haven't given up enough this year, as I didn't make a specific, conscious sacrifice. But every day, I feel like I've given up so much. Being a parent to a child with extreme needs is one of the hardest things anyone could ever have to do. Some days, it wears me so thin that I don't think I can possibly handle anything else on my plate. But as my plate continues to make itself fuller, I find a way to trudge on.

Easter and spring bring signs of a new beginning. With this, I plan to create a new beginning for myself. I need to be more present, and more appreciative of all that I am blessed with. Family, friends, amazing children, a roof over my head, food to eat, and a bed to sleep in. I have it pretty good! Happy Easter, my friends.

I will cherish these kinds of pictures forever! <3

Wednesday, March 14, 2018

Pulmonary

Isaiah had a second visit with his new pulmonary doctor last week. We really like this doctor, as it seems he listens to what Isaiah needs and he goes above and beyond what anyone else has done for us. That's the good news. The bad news? He's skipping town and we won't be able to see him anymore. Just. Our. Luck.

We are told that the pneumonia episodes and the possible aspirations that he may or may not be having are causing damage to his lungs. He suggests a CT scan to see how much damage there is. Although there is nothing that can be done to reverse it, it can help come up with a better treatment plan.

We've been advised to administer two nebulizer treatments twice daily in addition to the vest, his inhaler, and the cough assist machine. These treatments take about 30 minutes each time, so an hour a day is now spent just on pulmonary concerns. If he's sick, that time doubles or triples. He's also going to try an inhaled antibiotic and take it as a precaution every other month to try and keep anything at bay.

Hoping this helps improve his breathing and quality of life. We thought he was doing so well because he wasn't needing oxygen anymore, but apparently he's not doing as well as he appears. On a positive note, he has been having a good time at school. And everyone is loving the new house.

These girls love their brother! 

Wednesday, March 7, 2018

Sialorrhea

Sialorrhea is a fancy way to say excessive production of saliva, or increased amount of saliva in the mouth. It's a common diagnosis for children with cerebral palsy, like Mr. Isaiah. We've been struggling with this for a long time. 

In Isaiah, his excessive saliva comes out in the form of drool, as his muscles are weak and he doesn't have a good swallow. He soaks several bibs (or bandanas, as we like to call them because it's more mature) per day. We've tried oral medications with no luck, we've tried atropine drops with no luck, and we've even tried botox injections into his salivary glands, also with no luck. 

We recently had a consult with an ear, nose, and throat physician regarding this. He suggested the next step was parotid gland ligation. There are several salivary glands in your mouth, but these are the ones that are higher on your cheek. The physician described it as a minimally invasive procedure that blocks off the gland from producing saliva, so that once it can't produce it will basically die off. 

Isaiah had this procedure the Monday before we moved, and he did awesome! While he was under general anesthesia they did and auditory brainstem response (ABR) hearing test. We found out he has hearing loss in both ears, and he is a candidate for hearing aids that we will be trialing soon. 

As far as the drooling goes, we still notice quite a bit coming out of his mouth. However, he is not needing oxygen at night nearly as much, so we're confident that it somehow helped in that area, that maybe his secretions are only coming out the front and not going down his throat while he sleeps like they used to. We'll take any kind of win we can get. 

Isaiah looking handsome before school. Notice his cute matching bandana. :-)

Friday, February 23, 2018

We Moved!

Last weekend we closed on both homes and moved into our new one. We were so lucky to have a lot of help in loading up the moving truck and unpacking when we got here. We're almost all settled and starting to get organized. 

Isaiah starts his new school next Monday. I think he is really missing his friends and teachers at his old school, but we met with his new teacher and the staff and they seem really friendly and helpful. It is set up almost exactly the same as his previous program, so I think he will fit right in. 

Back to unpacking, I'll try and update you again soon! 

Mr. Isaiah at his last day of school. 
The kids' last look at their previous home...
He's being patient while we're unpacking,
but maybe ready to get back to school?

Thursday, January 18, 2018

New Therapy

Isaiah finally gets to try The Vest, an airway clearance system that is supposed to help him move his secretions and hopefully prevent him from getting pneumonia. He either has another case of pneumonia right now or he didn't effectively beat it the last two times we treated for it. So since November, he's been fighting something off.

The Vest seems to be working really well. We had the rep come out and demo it, and he really perked up after the first treatment. Prior to that he had been in bed for like 5 days straight with a high heart rate and low oxygen levels requiring him to be constantly on oxygen. But by the next morning, he was ready to go back to school, off oxygen, and back to baseline for his heart rate.

I'm hoping this is helpful and it's not a coincidence. His vest basically inflates and deflates rapidly, and it almost looks like it's shaking him. He doesn't mind though and smiles through treatments, even as I do his nebulizer at the same time. It even comes in his favorite color, camouflage. Here's a link to their website if you're curious: https://www.hill-rom.com/usa/Products/Category/Respiratory-Care/The-Vest-105-Home-Care/

Today is his second day back to school, and he seems to be doing great so far!

Quick video (no sound)

He was practically sleeping through it this morning.