Neurologist Appointment

Alright so lots of people have been asking how the appointment went yesterday at Hudson’s neurologist appointment. So I’ll write a blog so everyone can read it! 

He was a wonderful Doctor that we met. He was very thorough which was fantastic. After he went over Hudson’s EEG that was done in the fall he said there were 2 separate parts of Hudson’s brain where it was showing Epeleptic Seizure waves. He’s never had a actual seizure before but has spells when he has a fever where he cannot walk and just falls to the ground and has a dazed look on his face. His legs are very wobbly like jell-o. 

He said Hudson was at high risk of having a seizure and told us what we needed to do in the event this ever happens. He isn’t sure if this is epilepsy or Ataxia. So he is sending us to get a MRI but this could take 8 months as he will need to see a anesthesiologist to be put under for this. He is also sending him for genetic testing which is about a year wait as there is only one in the entire province. 

He also was sending in a referral to a paediatrician as well. We are in the right direction but still will be a wait before he know answers. Atleast we are getting there. He’s also questioning if there isn’t more to his Apraxia then what’s going on. Like if something is causing this delay in his speech. We go back to see him again in 6 months 

Because we don't have enough piled up...

It's been awhile again. Like usual, life gets hectic. 

Hudson has started going to Pre-K. And I'm so happy to say he absolutely LOVES going. He would go everyday if he could. Loves his teacher and is having so much fun. 

He had his speech screening and of course needs speech therapy! Ha. We meet with his Pre-K teacher, the school SLP & one of the TA's to discuss the plan with Hudson at school.  Hopefully we will start speech soon in the school. We also hired private speech to come to our home every other week for a half hour sessions. He really enjoys them coming. They are absolutely wonderful! ECIP of course still comes to our house every other week as well. So he keeps busy with everyone seeing him. 

Over the past few years Hudson has had small episodes where he looses his balance. He falls and can't seem to get up again. It only lasts a few minutes but it's scary for him. The last time this happened was this August when we were watersliding. He just would say everything was going round and round. This was concerning as there is a hereditary condition that other family members have. One of which one family member has ever been properly diagnosed and is being treated with medication. 

I brought it to the attention of our G.P when I brought both kids to their yearly checkup. At first I didn't think our Dr was very concerned, however he did order a EEG for him to have done. Which I might add was not fun to say the least. He had to stay up 2 hours past his regular bedtime and be woken up 2 hours before he usually wakes. We had to drive 2 hours to his appointment. He wouldn't cooperate so they had to swaddle him and hold him down while they got everything hooked up to his scalp. He was so mad. He eventually did fall asleep. Thank goodness Ibrought his IPad so he could watch a movie to calm down. 

This week we had to go back up to see our Dr for a follow up appointment and there were irregularities on his scan. He believes Hudson has epilepsy. We are now being referred to a specialist in Saskatoon. Which is about 4 hours from here. He is a paediatric neurologist. So hopefully we can get some answers. I am happy with going to see this Dr as this is what I wanted from the beginning so it gets dealt with. 

It's was a hard thing to hear. But we are in the right direction. Everything is just pilling up and it's starting to get harder and harder to deal with things. I've been so strong up until recently where I find myself getting more teary over things and sometimes just have a bawl fest 😭

Here's to hoping we get past all these hurdles 👍🏼 

Diagnosis for severe Childhood Apraxia of Speech

Here are Hudson's official diagnose papers that were done in November! 

Disability tax credit application

Remember that WONDERFUL SLP we are so thankful for having!? Lol incase you don't remember her, she's amazing. 

Here's another reason why .... 

Back in April I was applying to the disability tax credit. Since Hudson was officially diagnosed with Severe Childhood Apraxia of Speech (CAS). I decided to apply for the tax credit for the possibility of bejnf approved so we could maybe hire private speech therapy to come to our house since we were loosing Twyla. Would help to have them come even once a month.

Well, Twyla helped us so much by filling out these forms (there was a lot of pages) and thankfully to her we got approved! 

We have been back paid since 2015! 

So this week I contacted Shay at "Let's Talk Speech and Language Services" and they are coming on the 11th to do an assessment and my plan is to have them come once per month and then he will also see the school SLP when he starts school. 

Things seem to be lining up good! 

Here is the paper I got from the government! 

Fun in the sun

A little break from talking about all Hudson's troubles and what we dealt with. A little happier post for the night. We took the kids to Elk Ridge Resort in Waskesui last week. We had a lot of fun. The kids loved it there. Here are some pictures of our few days we were there 😍

Heart wrenching ~~ Hardest thing we've done in awhile

Well, a couple weeks ago, was a really hard day for us. It was the last day Hudson would see his SLP, Twyla. And even though it was on July 18th, I'm going to write this entry like it is today that we last saw her. 

She has been so amazing to us. We definetly would not be where we are today if we didn't ever meet her. She has worked so hard with Hudson to get us here. It's hard to believe that only a couple years ago, we were walking into her office, not knowing what was about to become what. Not knowing that Hudson would even have a disability like Apraxia. Or even a disability for that matter. Not knowing that Apraxia was even a thing or ever hearing about it. Not knowing that maybe we wouldn't have to go for long; that Hudson would just start talking. Not knowing that this was soon to be our lives. Driving 2 hours each way twice a month. The financial cost that would come with this. That today would be the last day we will see her. How heart wrenching today would be. Today should be a day of happiness, that I would be dreaming for this day a year ago, but instead this has become our lives. That even though I will not miss the driving, it bring huge sadness driving to Weyburn for the very last time today. That today we will not go back. How attached we have got to her. To see how much Hudson loves going go see her, and knowing how much he is going to miss her. 

Today, she opens her cabinets and Hudson gets to pick what he wants to play with today. Which was so exciting.  

We had Hudson's Aunt Sarah make something for her. A succulent terrain with Hudson's actual sound wave with the saying on it. Couldn't have imagined it turning out any better. So we gave it to her along with a letter I wrote to her. Which I will attach below. 

I did manage to hold it together while we were in the appointment but I can't say the same for the last few days leading up to this day. I've been quite sad. Wish we could continue to see her, but unfortunately once he enters the school system, he looses his health services, and starts getting the services with the school. I'm sure his new SLP will be wonderful, it's just so hard to transition to someone new. And if you know Hudson at all, you know how shy he is and how hard it is for him to get comfortable with someone new. 

So anyways, Hudson graduated from Speech Therapy in Sun Country Health Region on July 18th and will be starting Speech therapy with Prarie South School Division in September! 

Her are some pics from his last day. His picture with such a wonderful woman Twyla, his certificate he received, his gift to her and my letter to Twyla! 

 

Pre-kinder program

Wow, it's been awhile since I have blogged

Been enjoying the summer with the kids. So great news, I did apply for Hudson to be registered into the pre-kindergarten program through the school. Want sure if it was going to be a go or not since the budget was so terrible, but it was a go and he has officially been accepted. Will be every other mornings, once school starts again in the fall. Was a happy and sad moment to get the email. Happy for him to start school and work on socializing with his peers and working on his speech but oh so terribly sad that we would have to leave the most a,asking speech pathologist ever. She has been amazing and can't imagine having to leave her. He will have a new SLP but it most definitely will not be the same. 

Here is the email that we received from the school.