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

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

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! 

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. :-)

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?

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.

Happy New Year

2017 is done and 2018 is here! I'm excited for some changes that are coming for our family this year. We have been looking into moving into a house that better accommodates Isaiah and his needs. We just happened across a house that checked of most of the boxes, is closer to our families, and is brand new and just waiting for us to move in! We rushed to put our house on the market a few days ago, and it's already sold pending inspection. That means we're looking at moving in mid-February if everything works out. We couldn't have asked for a better solution.

I am hoping 2018 is a healthier year too. Isaiah just cleared up another round of pneumonia. We all got a cold right after Christmas and of course Isaiah just can't fight it like the rest of us. He was well enough to go to school today though, and his teacher said he was happy to be back. Despite the illness that followed, we had a great Christmas. Hope you all had a good holiday season as well, and we wish you the best in 2018!

Fun at School

Isaiah still loves to go to school. And I love seeing pictures like these from his teacher. He had fun creating art and the last picture shows him trying on some sunglasses as he was sorting items that were worn in summer and winter. Such a ham. She sends me pictures of him with his friends too, it's really sweet! 

Flashback Friday

Flashing back to when each of the kids were seven months old. I love comparing pictures like this! I don't really think they look alike. They are all professional smilers though. And... all bald! I can't believe how much our lives have changed in the last 6 years! Isaiah is on top (obviously), Belle is on the left and Lani on the right.

Santa! I Know Him!

Isaiah and his sisters got to see Santa not once, but twice this year! First, HopeKids had an event called Cookies with Santa. They held it at GameWorks. All the children who attended got to play unlimited games, and there was bowling and donuts and coffee and cookies to decorate. The Santa was super sensory friendly, although, the environment was not. We didn't last too long but got to get our picture taken with Santa. Belle told him she wanted cookies and candy for Christmas. Yay.

Then, John's work had a Santa breakfast that they put on every year. They got another picture with Santa and got to have a yummy breakfast. Belle was in heaven here, breakfast is her favorite meal of the day (just like her mom). I've given up on ever getting a picture of all three of them looking at the same time, but they all turned out pretty cute anyways.

I hope you all have a very Merry Christmas and Happy New Year. Or, Happy Holidays if you don't celebrate ours. Here is our holiday card as well.

I think Isaiah and Santa have a secret.

No one looks pleased. But these kids are still adorable! 

From our family to yours.