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! 

 

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. 

Bittersweet

Today was our usual every other Tuesday trip to Weyburn. We had his Physical Therapy & Occupational Therapy appointments along with his usual Speech Therapy. 

Today at OT & PT, they worked on the usual. OT was having him try to do some tracing practice sheets, pinch grasp of marsh mellows with close pins. PT had him doing stairs without holding onto the railings, jumping, running, standing on one foot which he was having no part in along with jumping on one foot and skipping too. So will be practicing that at home.

Unlike the usual OT & PT appointments, today was different. We have not seen them in 3 months which was a great sign, and today Hudson no longer will be going to see them again. He's been discharged. YAY!! It was a sad & happy moment all in one. It was just bittersweet. They've done great with him. It's sad to not go back again but it's so exciting knowing he doesn't have to go back. Physio can see him in the school if they need him to be seen again, but OT cannot. But there is someone that can come to th school, but it wouldn't be the lady that currently sees him. The lady fro Physio said his case will stay open until she gets back from her maternity leave in July of 2018. So if we need him to be seen again they will have it all there. 

So there is some exciting news today for us! 

 

Pushing forward

Well, it's definitely been quite some time since I've made a post. The last time was back in February when we got Hudson's official diagnosis. That was a hard day. I was also dead set against putting Hudson in the pre-kindergarten program as well. A lot has changed since then. 

As of last week, I have officially sent in the application form for Hudson to go into the pre-kindergarten program. Last year he was eligible to attend as well, but we chose to opt out of it as he still had a lot to come with his speech. He has made amazing progress in this last year. I do believe we did make the right decision last year as he definitely needed to focus more on working with his speech vs attending pre k, although it was a very extremely hard decision as I did really want to send him to be able to learn things and have the peer support he needed. A year later, a lot has changed and he now still does need help with speech therapy, but also needs to be introduced to things in the school setting and Learn other things also. To make up for the peer support thing, we put Hudson's name on a waiting list at the local daycare to go Part-Time. In July, a part time spot opened up and he's been going ever since. I believe he also has progressed a lot from going to daycare to be there for his peer support. Although he gets so upset when we drop him off sometimes even still a year later, I know he has fun and I know it's good for him. 

The very unfortunate part of Hudson going into the pre-kindergarten program is that Hudson will loose all his health services. So his SLP he's been seeing since he was 2. This is going to be a very sad day when this day comes. She's done amazing with him and he's come so far. He would never be where he is if it wasn't for her. Not only has she helped, but Hudson is so comfortable with her. This is a big deal because Hudson is so shy it takes a very long time to warm up to someone. He looks forward to going to see her.

 Along with Speech Sevices, Hudson will loose his Physio & Occupational Therapy services. These wonderful ladies have been working with him since he was about 2.5 years old. PT has been working with his walking, running, jumping, kicking, Ect. When Hudson crawled, he never really "crawled". He bum scooted. That being said he would have his left leg out in front of him and his right leg bent and pointed outwards. This caused him to have severe delays in walking properly. He actually never took his first steps until he was 23 months old. So he was extremely delayed. When he did start walking his foot that he angled outwards, pointed outwards permanently when he would walk. This caused problems. He was very clumsy because of this and couldn't keep his balance. So she's done great with him helping correct this and doing other things as well.

 OT started seeing him a bit after we started with PT. She works on his fine motor skills, such as beading, drawing, colouring, pinching small objects, any of that kind of things. He does better but still needs help. I have to help him eat a lot of the time as he has trouble using a spoon or a fork and keeping the food on it until he gets it to his mouth. He is getting better but needs help sometimes. 

At our last therapy appointments, they both didn't need to see him for 3 months so that was great news. We will see them this week and see where we go from there. If it's another 3 months then that appointment will be our last. I am not sure if he can get these therapies come to Coronach once he is under the ministry of education vs the ministry of health services that he is under currently. I will have to look into that.

When Hudson starts the pre-kindergarten program he will should see the SLP there 2X a week. It will just be hard start as he will have to get used to her and this may take some time. 

Since he was diagnosed with Severe Childood Apraxia of Speech (CAS) I had our SLP fill out a disability form and hopefully he will get approved for that. It's been quite some time and I've not yet heard back, so will have to try and get a hold of them. I know that won't go well though, it's near impossible to get a real person from the government on the phone. If he does eventually get approved for this, which I don't see why he wouldn't, I plan to hire Private Speech Therapy to come to our house once he starts school in hopes to help with this therapy. 

At our last appointment with our SLP, I told her our plans for this fall. It was hard to tell her. I even got tears when I was telling her. She said he can continue to come for the summer. I think until the end of July or middle of August I can't remember what she said. Although, I won't miss the 2 hours drive each way twice a month I will miss taking him to see her. 

If memory serves me correct I believe it said all the pre-kindergarten applications have to be sent in but the end of the month. Hudson, fortunately does have an advantage in the application process as children with a learning disability are chosen first over a child who doesn't. So he should definitely be accepted. I believe they have 14 spots. 2 get held back until September in case and new children move here over the summer with intensive needs. After then and if that needs isn't needed they will fill them I believe. 

To wrap up this entry of the blog. We just finished celebrating Childhood Apraxia Awareness Day. It was last Sunday on May 14th. This day is designed for anyone with Apraxia to share awareness. It's on May 14th every year. This year just happened to be on Mothers Day also! I had my very talented sister make Hudson a shirt and I ordered nail wraps with the apraxia symbol. Wearing blue is helping show support for everyone on this day who struggles with this. I was hoping to find somewhere close that would be doing a walk for Apraxia but nowhere seemed to do it. Should just organize our own walk next year but I don't know if anyone would even show up for it 😢

Well that's all I have for now. Sorry for the long post. Hope I wasn't dragging on too much😀

I will try and update this more, life just gets busy. 

As always, i Thank- you for all your continued support for our little guy ❤️

Here are some pictures from our Apraxia Awareness Day!! 

 

  

Heartbroken

Today we went to Weyburn. Started off to be a great day, and soon turned into a terrible day.

Hudson went to see his Physio Therapist & Occupational Therapist. He started out really shy as he hasn't seen them since before Christmas. Turned out to be a goofball by the end. They are both very happy with everything. Said to just keep working with him with his jumping, balancing ect and his fine motor skills, teaching him how to hold a pencil properly ect. 

They said they don't need to see him again for 3 months. So that is exciting. We've been seeing them a little over a year and he's come a long way! 👍🏼

Went to Hudson's Speech appointment and it went well. He was tired so didn't cooperate as well as hoped. But he did as good as he could. After we were done with his session, she had his results from his Apraxia assessment that was done before Christmas. Hudson has officially been diagnosed with Severe Apraxia of Speech. I know I was probably expecting it but thought he was doing so much better. Just hearing the Severe part. I just have this knot in my gut. I know there are worse things he could have but it's just heartbreaking to see it on paper. Kids with Apraxia need speech therapy 5X a week. We will be lucky to get once a week. I'm sure it will stay as once every other week. Guess we will see. Funding with our health care is a issue and to hire private is expensive.

So that's what's new here. I feel so helpless that I can't fix this 💔  

 

Improvements, Frusterations & Wonderful Services!

Well, Its been 5 months since my last blog. For some reason the app that blogger used isn't available anymore on my IPAD or IPHONE so its hard for me to get near a computer to post on this blog. So there is my excuse for no blogging 😏
Hudson has been showing a huge amount of improvements in the last few months. Probably really started to take off since December. He is starting to say more then 2 words at a time and for the most part we can understand what he is saying. Every so often, we have no idea what something he's trying to say. But 9/10 times we do. We are really struggling recently, he just has so much anger. He's always screaming or crying and he just down right grouchy. Maybe a lack of sleep I'm not sure. He definitely doesn't sleep as good as he used to. He does wake up in the night, and will always try to get in our bed. He gets upset when we don't let him but I just hate to have that bad habit to break ontop of everything else. He also doesn't nap anymore as we FINALLY took his suckie away. He only ever had it at naptime and nighttime but I'm sure that has a huge part to do with his crappy sleeping patterns.
He continues to go to daycare part time at the daycare in town. The initial drop off is always a nightmare but I think he enjoys it once we are gone. We are still making the 2 hour drive to Weyburn every other week. He really looks forward to his session's with his SLP. Currently we are working on making the "K" sound. when he says Ka he will put his tongue to the rood of his mouth making a Ta sound where his tongue should be on the bottom behind his front teeth. So that's been challenging. He is showing proper errors that a child would make when learning to speak. His errors are consistent errors vs errors that are scattered all over. So our SLP is happy that he is showing those kinds of errors. Recently, he got an app off our apple istore call Proloquo2go. We are so excited for this app. Its a communication app that he will use to, well communicate. Its amazing how much he can do. And he can literally do Anything as far as communications. We add pictures of his favorite things, family members he sees, places we go, foods he likes, drinks, toys, colors, activities, and the list goes on. He goes through the folders to find what he wants. Its still a learning progress but he does very well. Currently he uses it on my ipad, but i'm hoping that we can get him his own Ipad that he will be able to use anytime he needs to. I heard many people make comments about how they thought it would decrease his speaking as he would rely on this app, but its actually the complete opposite. When the Ipad says what he is wanting, he will repeat what it says. This app will be able to be something he can use in school when he starts kindergarten.
Hudson attended a event at this school this week called impact. It was a bunch of different stations of different activities for them to do. There was a sheet afterwards to see where your child is at for their age. It was good for him to go to. Hudson could have started pre k this fall, but we chose to not put him in as we aren't ready to loose his current SLP. He would see one at the school, but Hudson is just so shy it takes him an extremely long time getting used to someone and opening up. We just aren't ready for that step yet. He would go in pre k again in the fall, but again so unsure if its the right step just yet. He's just blossoming so much right now with what he is doing now, it would be awful if we went 20 steps backwards. I'm sure the school has amazing supports but we just aren't ready yet.
Hudson still goes and sees his Physical Therapist & Occupational Therapist in Weyburn once a month on days that we are in the city for his SLP appointments. He has even come along way there as far as his running and things like that. His jumping has improved as well as he jumps on our trampoline at home, but to jump from standing on the floor is something that he needs work with. His fine motor skills are also needing help, although he's doing a lot better since he started going, he still needs help. Things such as putting a bead on a string, cutting with scissors, and something like writing his name. or drawing a line inside the designated area. All he will do is just scribble all over the place. I often try and think of what Quinn could do when she was his age, but its hard to remember, and Quinn was also a lot more advanced then he is at his age right now. So I hate comparing the 2 of them.
Ecip still comes to our home and helps to work with him on things that his SLP is doing, as well as his OT & PT which is great. The weather seems to be terrible every time we book with them, so they haven't been able to make it down the last few appointments. The joys of living in rural!!
Recently Hudson was referred to a Child Psychologist. Where she is going to do an assessment on him and then we will know what areas he needs work on. They will then give us suggestions of things to do. Its more of a developmental thing they do. Which is a huge relief. I was worried something was "mentally" wrong. Its hard to not assume things. Just when you hear mental health, that's the first thing that comes to mind. So I hope everything will go well with that. But like I said about his shyness, I can see it not going so well. He was starting to whisper to me when we met the lady. So I guess we will see if we get anything out of it. Hopefully we do.
Hudson wanted to go into dance so bad this year as he wanted to dance like his sister, but he would scream and wouldn't do a thing, so we took him out of dance, and put him in gymnastics. He really enjoys it and I think its really good for him to practice his jumping and balancing!
Anyways, that is everything that we are currently doing with Hudson. There is light at the end of the tunnel as we see improvements, but it still is a HUGE struggle and its still heartbreaking to see HIM struggle. But we are headed in the right direction and he's getting the services he needs and we are on top of things!
HERE ARE SOME PICTURES OF HIM RECENTLY!

 Off To See His Speech Therapist

Fun Cutouts at Impact

Busy @ Gymnastics

It's been awhile

Wow! It's been over 3 months since I last posted on this blog for Hudson.

So much has changed since the last post. Hudson is becoming more and more able to understand when he talkes and he's so good at repeating you. He loves to practise his words and even when your done he wants "more". He has started trying to say two words at a time now which is great and he's starting to not drop his last constant. I'm very happy we decided to keep going to Weyburn for speech, although it would have been so great for him to be in preschool. It just wasn't the time yet for him. We will revisit that next year. Chances are he will go into preschool at the school next year. 

Hudson started going to daycare more. He got a part time spot which was great. It's so good for him. Will really help him socially and hopefully he will learn to talk with the kids there too! 

We are very busy between going to Weyburn every other week, ECIP coming on our off weeks. It's good for him and very good to have the consistency.