Tuesday, 8 December 2015

Our Fight, Our Hopes, Our Dream

Being that Hudson cannot express himself. We never know what he feels, he cannot speak to tell us. 
Since we are at a total loss of what to do it was up to me to try and fight for him. 
When your child cannot express themselves you need to be their advocate. Which is what we're trying to do.
This letter we have wrote to the MLA will most likely not go anywhere. But there is always hope that maybe it will and that Hudson will get the services he requires and that children like him will get the services they need. My hope is that parents just like us who have children with disabilities will get the services they need without the worry and gut ache feeling when your child isn't getting the help they need and deserve. 

I have posted a picture of our letter for you to read that I will be mailing to our MLA 

Dear Dustin Duncan, 
In May of this year, my son who has severe speech delays, started into speech therapy in Weyburn. The program is set up so that he does therapy for 10 weeks & then there is a break for 10 weeks to accommodate other clients. Recently my son has been prescribed by his paediatrician, to receive increased sessions (more then once a week with no breaks). However, when I spoke to my SLP, due to severe understaffing this would not be possible. The severe understaffing in this department has created a back log in our system for my child and others like him. This is a huge concern, not only as a parent, but also as a dedicated healthcare employee. If we cannot meet our current population's need's and are not making changes and improvements to meet those demands, what chance do our patients and children have at managing and improving their current state?

My son is at a very critical age where this needs to be addressed immediately and despite efforts to increase his appointments with Sun Country Health Region we are at a complete and total loss because the region is not meeting the populations needs and demands of the patients.

It was also mentioned to me that my son is showing some signs of possibly having a condition called Apraxia. It is however, too early for him to be diagnosed. Children with Apraxia are required to have intensive speech therapy treatments done 3-5 times weekly. Children with Apraxia in Saskatchewan are still only seen once a week. That is a disgrace to the healthcare system.

I have been told the only way I could receive the required increase in his speech therapy, is to go private, which is beyond my financial means. In Sun Country's defence, I have been offered therapy every other week on a continuous basis, without having to take the 10 week breaks like we are having to do now. This is a better option than it was, but he is still not receiving the constant "weekly" therapy that he is required by his paediatrician 

I ask that you as the Minister of Health address this shortage not only in Sun Country Health Region, but across the province in each of the health regions. Hire on extra staff as well as support staff to ensure the capacity is being met in the Speech Pathology sectors. In speaking with our speech pathologist, staff have asked for additional help and are not being heard. Children are the future of this province and if the supports are not in place to ensure proper development and learning, our province cannot flourish to its full potential. THIS NEEDS TO BE ADDRESSED FOR ALL CHILDREN AND PARENTS TODAY!!!!!!

I will await your response.

Sincerely,


Megan Trethewey 



Friday, 4 December 2015

DOTERRA DDR PRIME



I have recently had a friend who is a DoTerra oils rep message me with a link she came across that is helping children with their speech difficulties. 
I have put in a order and very excited to give it a try. I really hope it works. I am willing to try ANYTHING! 
Here is the article: 





DDR Prime and Speech Improvements
lala

A friend of mine who has two sons with Down Syndrome told me about DDR Prime oil blend, and how it helps with speech in children.

Speech?  I got a couple of kids who need that, stashed it in my cart without much waiting.  SPEECH!

“Just one drop along their spines in the morning.”

Done, didn’t think much more about it.  These oils have done more for us than I could ever explain, I know their potency and rely on them for so many needs.

Elijah has been in speech therapy for 2.5 years.  We also wish Maria was in speech therapy, but haven’t found the right spot for her yet, although we did try singing voice lessons, her teacher trying to get her voice out her the raspy range, one that many of the kids in her orphanage had, I don’t know why.

I ordered the DDR prime, it was a bigger bottle than anything I had received from doTerra before.  I started in that morning, one big drop on along each of their spines while they ate breakfast, just before I put InTune on everyone’s necks.  #MagicPotions :)

The next day in the afternoon Elijah told me, “Mommy, I feel very well.”  I remember laughing as his proper English, then my mind flashed to the DDR prime.  There was no way to know for sure if this well spoken, clear sentence was already results from the DDR Prime, or not, but it did strike me as odd.  I continued applying DDR Prime pretty regularly, at least every other day to both kids in the daily morning routine.

We saw a speech improvement in both of them.  BOTH!  At the same time.  Maria’s voice has RARELY been raspy since we started using it. It’s clear and bright.  We haven’t had her practice her voice CDs once since we started.   I consider often if there were other influences that could be adding to these speech improvements we are seeing, in some ways there is no way for me to know if it was this or other influences, but what makes me think the DDR Prime has been a powerful source of speech help is that it has been in BOTH kids, not just one, and other people see the difference as well, not just the hopeful parents.  Elijah’s speech teacher noticed a difference before I told her about the DDR Prime.

Two weeks in, Elijah’s speech teacher was raving to me about how well he was doing, new words, but more so he was using his whole voice, which he sometimes turns off (you can see him talking, but if you were to touch his throat, there would be no vibration, he’d turn off the talking box in there)  He had stopped doing that, for the first time since he’d been home.

(He also had a HUGE growth spurt after we started using this oil….HUGE, eating a ton, and when I measured him he had grown an inch since February)

I can’t say it will work for everyone, but as I researched online, it seems like it works for LOTS of kids, there are moms raving about this stuff, how did I not hear about it sooner?

The purpose and function of DDR Prime is this:

ddr

 

Lots of people using it for many different reasons and having great results just like we did.  Had I known about this sooner, I could have saved some time and money driving to voice lessons last summer 😉

We are HAPPY over here about this stuff and we started using it on us and Finley has well once we learned the health and cellular benefits of DDR Prime.

I am excited to share with you guys, if any of you have little ones who need extra help in the areas of speech, I’ve also read many raving reviews on how it effects children with aspergers and Autism.

 

Find DDR Prime here .  Look under the category Wellness, then Cellular Health, and voila!  It’s a 30mL bottle, meaning double the normal amount you normally receive in a bottle of oils.

 

 

DDR Prime Essential Oil Cellular Complex is a proprietary blend of essential oils that have been shown in clinical studies to help protect cells against freeradical damage while supporting healthy cellular function. The blend includes Frankincense Resin, Wild Orange Peel, Lemongrass Leaf, Thyme Leaf, Clove Bud, Summer Savory Plant, and Niaouli Leaf essential oils providing powerful antioxidants that help protect against cellular free-radical damage.

 

 

 

Additional Info:

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Finally some good with all the bad :)

Yesterday was a good day. 
We had a very good appointment. SLP was happy with all the sounds he was saying. Saying v, d, f, b, h which was good. 
He tries so hard. He is a determind little guy. 

She also did talk to her boss and we have a option to think about now. We can continue going weekly for the 10 week blocks like we are doing. Or we can choose to go every other week continuous and have no breaks. 
Think we will go with option b. 
I told her I would talk to Robert, but that's what we are leaning towards!! 

Ecip comes already every other week already, if we choose to do speech the same he will be with someone every week. 

The decision now is to go ahead with private. We are probably not going to need it as much as i thought, but we will maybe still use them for the extra help that he still needs. 

I am off to wait in line for HOURS for princess ball tickets tonight for Quinn for Christmas. Wish me luck :/ 

That is all I have for today. 

Thursday, 3 December 2015

Emotional Rollercoaster of ups and downs :(



This is the first time I will be publicly posting this other then telling some close friends and co-workers. . . . . 
This has been nothing but a horrible horrible week. 
Don't think I've cried and stressed and had this awful knot in your gut so much in this last week then I have this week in a VERY long time.. 

Here it goes. 

At our Speech appointment, I explained that the Paediatrician is recommending more speech, more often. 
With expectations of our SLP going ahead and doing what the Dr requested, especially since I had a written "prescription" for this. That we wouldn't be taking this 10 week break and just plugging along. 
I was absolutely blown away, that this wasn't going to happen for us. 
There was 0 funding for extra speech. The government will not budget for more speech. That our SLP has been trying and trying to get more SLP's hired in our health region. And guess what.. No budget. Isn't that just fantastic!!!😒
She's even tried to get an assistant to work under her. The population has doubled since she has been working and they won't fund for it. 
I can't remember the numbers exactly. But I believe she said she has 50 cases right now and another 40 on waiting lists. 
So she would be taking on 25 kids at a time which would be in the 10 week blocks like we are doing. 
I just couldn't believe it. I was so absolutely blown away. So frustrated and well point blank. I was absolutely PISSED!!!!😡
I felt so helpless. I feel like I've completely let Hudson down. That no matter what I try I can't do anything about it. I'm powerless. He gets to suffer and I can't do anything to get him past that. 

Twyla did say she would talk to her boss and see what happens but she's pretty sure it won't happen. If anything she would let her do every other week with no break. Guess we will see what happens. 
Fingers crossed!! 

This week at work I also called into five hills to see about being put on a waiting list. Would even be great if we could be put in speech in that health region when we are on our break. Would be great to do that. Sounds like sessions are the same there as sun country. So it's not just our health region.

Been looking into private also. We would pay $120 per session including their travel. I called my benefits and they will cover 70% up to $400. Will have to see what Roberts does. It's not a lot of help buy it helps a bit. 😁

Talked to Dr Datta to review his bloodwork he had done (his iron is low) and he asked how things were going. And I explained to him how we can't get more services. He stated to go private. He would write us a letter stating he was needing private lessons and then when we claim all those sessions on our taxes, that it will be covered. So that was nice to hear. 

Being as this speech therapy issue, is obviously a province wide issue. I have decided that I was planning to write a written complain to the MLA explaining what's going on. We need this to stop. We shouldn't have to go without. If these services are needed, then funding should be there and the services should be there. Hudson is at such a crucial age where he learns so much. He can't be without. He just cant!! 😰 



How can our government refuse services to this face? Or faces just like him?? 😔 this is just not fair. It's not!! 

What is childhood Apraxia of Speech ....

What is childhood apraxia of speech?

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. 

What are some signs or symptoms of childhood apraxia of speech?

Not all children with CAS are the same. All of the signs and symptoms listed below may not be present in every child. It is important to have your child evaluated by a speech-language pathologist (SLP) who has knowledge of CAS to rule out other causes of speech problems. General things to look for include the following:

A Very Young Child

  • Does not coo or babble as an infant
  • First words are late, and they may be missing sounds 
  • Only a few different consonant and vowel sounds
  • Problems combining sounds; may show long pauses between sounds 
  • Simplifies words by replacing difficult sounds with easier ones or by deleting difficult sounds (although all children do this, the child with apraxia of speech does so more often)
  • May have problems eating 

An Older Child

  • Makes inconsistent sound errors that are not the result of immaturity
  • Can understand language much better than he or she can talk
  • Has difficulty imitating speech, but imitated speech is more clear than spontaneous speech 
  • May appear to be groping when attempting to produce sounds or to coordinate the lips, tongue, and jaw for purposeful movement
  • Has more difficulty saying longer words or phrases clearly than shorter ones
  • Appears to have more difficulty when he or she is anxious
  • Is hard to understand, especially for an unfamiliar listener
  • Sounds choppy, monotonous, or stresses the wrong syllable or word 

Potential Other Problems

  • Delayed language development
  • Other expressive language problems like word order confusions and word recall 
  • Difficulties with fine motor movement/coordination
  • Over sensitive (hypersensitive) or under sensitive (hyposensitive) in their mouths (e.g., may not like toothbrushing or crunchy foods, may not be able to identify an object in their mouth through touch)
  • Children with CAS or other speech problems may have problems when learning to read, spell, and write 

How is childhood apraxia of speech diagnosed?

An audiologist should perform a hearing evaluation to rule out hearing loss as a possible cause of the child's speech difficulties.

A certified-SLP with knowledge and experience with CAS conducts an evaluation. This will assess the child's oral-motor abilities, melody of speech, and speech sound development. The SLP can diagnose CAS and rule out other speech disorders, unless only a limited speech sample can be obtained making a firm diagnosis challenging.

An oral-motor assessment involves:

  • checking for signs of weakness or low muscle tone in the lips, jaw, and tongue, called dysarthria. Children with CAS do not usually have weakness, but checking for weakness will help the SLP make a diagnosis.
  • seeing how well the child can coordinate the movement of the mouth by having him or her imitate nonspeech actions (e.g., moving the tongue from side to side, smiling, frowning, puckering the lips)
  • evaluating the coordination and sequencing of muscle movements for speech while the child performs tasks such as the diadochokinetic rate, which requires the child to repeat strings of sounds (e.g., puh-tuh-kuh) as fast as possible
  • examining rote abilities by testing the child's skills in functional or "real-life" situations (e.g., licking a lollipop) and comparing this to skills in nonfunctional or "pretend" situations (e.g., pretending to lick a lollipop)

A melody of speech (intonation) assessment involves:

  • listening to the child to make sure that he or she is able to appropriately stress syllables in words and words in sentences 
  • determining whether the child can use pitch and pauses to mark different types of sentences (e.g., questions vs. statements) and to mark off different portions of the sentence (e.g., to pause between phrases, not in the middle of them)

A speech sound (pronunciation of sounds in words) assessment involves:

  • Evaluating both vowel and consonant sounds
  • Checking how well the child says individual sounds and sound combinations (syllables and word shapes)
  • Determining how well others can understand the child when they use single words, phrases, and conversational speech.

An SLP may also examine the child's receptive and expressive language skills and literacy skills to see if there are co-existing problems in these areas.

What treatments are available for children with apraxia of speech?

Research shows the children with CAS have more success when they receive frequent (3-5 times per week) and intensive treatment. Children seen alone for treatment tend to do better than children seen in groups. As the child improves, they may need treatment less often, and group therapy may be a better alternative.

The focus of intervention for CAS is on improving the planning, sequencing, and coordination of muscle movements for speech production. Isolated exercises designed to "strengthen" the oral muscles will not help with speech. CAS is a disorder of speech coordination, not strength.

To improve speech, the child must practice speech. However, getting feedback from a number of senses, such as tactile "touch" cues and visual cues (e.g., watching him/herself in the mirror) as well as auditory feedback, is often helpful. With this multi-sensory feedback, the child can more readily repeat syllables, words, sentences and longer utterances to improve muscle coordination and sequencing for speech.

Some clients may be taught to use sign language or an augmentative and alternative communication system (e.g., a portable computer that writes and/or produces speech) if the apraxia makes speaking very difficult. Once speech production is improved, the need for these systems may lessen, but they can be used to support speech or move the child more quickly to higher levels of language complexity.

Practice at home is very important. Families will often be given assignments to help the child progress and allow the child to use new strategies outside of the treatment room, and to assure optimal progress in therapy.

One of the most important things for the family to remember is that treatment of apraxia of speech takes time and commitment. Children with CAS need a supportive environment that helps them feel successful with communication. For children who also receive other services, such as physical or occupational therapy, families and professionals need to schedule services in a way that does not make the child too tired and unable to make the best use of therapy time.

To contact a speech-language pathologist, visit ASHA ProFind

What other organizations have information about childhood apraxia of speech?

This list is not exhaustive and inclusion does not imply endorsement of the organization or the content of the Web site by ASHA.

What causes childhood apraxia of speech?

Childhood apraxia of speech (CAS) is a motor speech disorder. There is something in the child's brain that is not allowing messages to get to the mouth muscles to produce speech correctly. In most cases, the cause is unknown. However, some possible causes include:

  • Genetic disorders or syndromes
  • Stroke or brain injury

It is important to note that while CAS may be referred to as "developmental apraxia," it is not a disorder that children simply "outgrow." For many developmental speech disorders, children learn sounds in a typical order, just at a slower pace. In CAS, children do not follow typical patterns and will not make progress without treatment. There is no cure, but with appropriate, intensive intervention, significant progress can be made.

How common is childhood apraxia of speech?

There is little data available about how many children have CAS. The number of children diagnosed with CAS appears to be on the rise, but it is hard to know how the incidence has changed over time. Some factors influencing this rise include:

  • Increased awareness of CAS by professionals and families
  • Increased availability of research on CAS
  • Earlier-age evaluation and identification

What do speech-language pathologists do when working with children with apraxia of speech?

ASHA published two documents on CAS that outline the role of the SLP in the evaluation, diagnosis, and treatment of children with the disorder.

The Preferred Practice Patterns for the Profession of Speech-Language Pathology outline the common practices followed by SLPs when engaging in various aspects of the profession. The Preferred Practice Patterns for speech sound assessment and intervention are outlined in Sections 15 and 16.

Paediatrician referral

I scheduled an appointment for Hudson with our local N.P 
I was concerned about how Hudson walks, runs & jumps. He still seems to be delayed with his motor skills in that category. 
We got refferred to Dr Datta in Regina. 

I was very happy with our appointment. He seemed to be s really good Dr. Was very good. Checked him over completely and went through his history. Checked his legs, abdomen and listens to his heart. Said everything was good with his legs, that he was very strong. Mentioned that he may be slower at his gross motor skills since he was such a late walker. 

We got talking about his speech delays and discussing everything that we've done to help his speech. At our last speech appointment before this appointment. The topic of Apraxia was brought up at being a possibility. And being the worry wart that I am I was very stressed about it. Even though Twyla said it was way too early to diagnose and that he was only showing a couple signs of it. 

The paediatrician recommend more speech more often. We would give our SLP a note from him requesting. He also wanted some blood work done and wanted to test him for autism. He passed the autism questions. Which I had no doubt. We would do his blood work at home. 

I was overall very happy with this appointment. He would like to see him again in 3 months. 

Introduction to our family


Most of you know us, but for those who don't. Here is a little introduction. 

I grew up in Coronach, Saskatchewan. I have one sister and two amazing parents. Robert was born in Germany, and lived in Ontario , but mostly grew up in Moose Jaw, Saskatchewan. He has 2 brothers and a sister and his parents live on an average just west of Moose Jaw. 

Robert and I met in my grade 12 year. He was my graduation escort. I then moved to Moose Jaw to take office education. Guess you can say I fell in love and wasn't interested in my schooling. So I took a few months, got a job and decided I wanted to follow in (half) my mothers footsteps and work in the healthcare field. Decided to go take my Continuing Care Assistant course, which I'm so glad I did. Because I love being a CCA. I worked in a private care home called Chez Nous before we had our first child. I worked home care in Moose Jaw and briefly as a CCA at Providence Place as well. 
While finishing my course I started working at the Health Centre in Coroanch very casual, when I visited mom and dad. 

Robert and I got married in Moose Jaw in June of 2009. The very start to our beautiful life together. 

On December 3rd, 2009, we were boasting with excitement. We were finally getting our wish by finding out we were pregnant. The best news we could have ever been blessed with. 
On August 12th, 2010 after a hard labour and delivery we welcomed our beautiful baby girl Quinn Sarah Trethewey. She was/is perfect ❤️
She is our world and the most beautiful gift from God. 

In the Spring of 2012 we decided we would love to welcome another baby. Robert was working very hard getting his 1A with plans of applying to the Coal mine in Coronach. I loved this town that I grew up in and wanting the same for our family. He got the job in June of that year and we were very excited to leave the city life. As if we didn't have enough excitement going on, that we found out we were pregnant again. Very excited for Quinn to be a big sister. We would find out this time, in which we would be blessed with a boy! 
On March 10, 2013 we had a beautiful boy Hudson Robert Trethewey. He was perfect. Delivery went very well. 

He has been such a wonderful boy. So much more busy then Quinn ever was. He sure likes to keep us on our toes 😉

Hudson was a growing boy. He was right on track with his measurements and milestones for a few months of his life. 
He then started to be delayed a bit. He crawled late. He mostly just bum scooted. He never walked until he was 22 months. He wasn't talking, to which I was complete oblivious to the fact as I was so concentrated on his walking for all those months. Public health was recommending he be refferred to speech therapy. Which I thought was the stupidest Idea ever. Even my Dr thought he would be fine and not to worry until he was 3-4. I then had a second opinion from public health in our own health region this time and she suggested getting in, since the wait lists were long (just in case he needed it) 
Well, I'm glad we did. He DID need it. We have been going to speech therapy (2 hour drive) every week in 10 week blocks (10 weeks on and 10 week breaks). We have been doing this since May. It has been a long struggle as all he was ever saying was "Ba". 

This blog is the struggles and progress, roadblocks and milestones he will be hitting or going through as a child with severe speech delays.