Way overdue for an update on Hudson

So it’s been a ridiculous amount of time since I’ve even opened up Hudson’s blog. 9 months 🤯

Here is my update. Hudson was started on medication this summer. He gets it 2X a day every day (for probably forever) 

After he saw his neurologist in the winter they called back to say he was referred to a geneticist in Saskatoon however, the wait list is long and we wouldn’t hear anything for over a year. That his neurologist would like to get some bloodwork done to move ahead with some genetic testing to see if there is something to the spells he’s been having. And whether what is going on is in fact Episodic Ataxia. So we did that. We needed to have his bloodwork done in the city as this was a special testing that’s not done everywhere. Bloodwork was awful. He had a full blown meltdown and even kicked the lab tech 😓. This bloodwork can take up to 6 months before we would get any results. His blood would be sent to BC where it would be stored. And where his chromosomes would be kept for as long as they are until we decide to not have them there anymore. 

I would say Hudson started his new medication in June. He’s done well with it minus the awful taste. He is a trooper though and takes it for us. After he started this, his neurologist wanted more bloodwork done 6 weeks after ya make sure he wasn’t going acedotic. So he went again for the dreaded bloodwork 🙈. He had to have another person help hold him down. Didn’t go well. Missed the vein and had to try again. I felt so bad for the girl who was taking his blood. We got it done but then she called us back to tell us we had to go to another clinic to get more bloodwork done as the blood gases had to be done in the town next to us a hour away. Which was totally fine was just dreading going through it again 🙁. 

So after a few weeks we did it. After much convincing to him it wasn’t going to hurt very much and he could strong. He did a lot better and clenched his eyes shut while he got it done. Phew! 

We saw Hudson’s neurologist again this October for his 6 month follow up appointment. He is happy with where he is at and will continue with where we are going. He asked how the meds were doing and they ARE doing good but so far he’s not had a fever since the last one in Feb/March. *knock on wood* he hasn’t been sick! 

So it’s just a matter of time before he has a fever with Flu season upon us. We had to sign forms at the school for permission forms that they can give him Advil if he does have a fever in hopes to prevent a spell from happening if it does happen. This medication will not get rid of spells completely but will help them from coming. 

Hudson is enjoying school. Really likes his teacher. He still sees his SLP Assistsnt he was seeing from private but now at the school. He sees the SLP from last year at the school again this year and now that he sees his assistant at the school we now drive to Assiniboia 2X a month to see the SLP at the private company. He’s getting a lot of help and I think it’s definitely helping. He still has so far to overcome but we do see progress. He still sees ECIP that comes here from Moose Jaw and unfortunately they will have to discharge him before he turns 6 which will be this coming March. So that will be hard as he really looks forward to those appointments. 

We all went for eye appointments in October and found out he needs glasses now. Was a complete shock. He has noticed a big change and loves his glasses. 

I had a call yesterday and it was Hudson’s neurologist from Saskatoon to tell me that he received the results from that genetic blood test that was done and it did show changes in one of the genes which confirms that what Hudson is being treated for (Genetic Ataxia) is definitely what he has. That he was going to refer him to the geneticist. When I asked him if we did already he did confirm that. So he will send his results to that Dr in Saskatoon and we just have to wait for an appointment. When we had our letter mailed this year it said the wait is between 3 & 4 YEARS!! So it will be a long wait.. 

Hudson has also started seeing a paediatrician in Moose Jaw to keep an eye on him between our neurologist appointments. He’s a very nice Dr and Hudson is really starting to not mind all these appointments. 

So there is our lives in a nutshell in the last 9 months 💁🏼‍♀️

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!