Good-Bye

When starting this blog about Mikail’s journey, I thought it would continue on for years and years, but it seems that this will be the last entry and oh how heartbreaking that is for me to write.

You see, three days before January 23rd, our dear son Mikail had the common cold/flu. Friday January 23rd he didn't wake up in the morning. How does one describe finding your precious boy's body, lifeless? How does one describe the physical ache and pain one feels in the aftermath of unexpectedly losing your first born child. The boy that was your miracle baby. The boy who was healthy and vibrant and full of life? The boy that loved people and Jesus. Our boy.

We thought we would share life's journey with him for the rest of OUR lives. God in His infinite wisdom saw otherwise and I am not sure that we will every understand that, this side of heaven. What we do know is that Mikail loved his Jesus. We know that he is sitting at the feet of Jesus and that although we miss him so incredibly much, a thousand days on earth are a short day of much joy for him in heaven.

The autopsy showed that the cold/flu that Mikail had, masked the acute bacterial pneumonia that took his life within hours of infecting his body. There was nothing we or the doctor's could have done differently. Even the Coroner said that had this happened to one of his children, he and his wife (also a doctor) would have done exactly what we had done and had we brought Mikail to the ER, we would have been sent home and the outcome would have been the same. If he was in our shoes, they would be burying their child. A very unfortunate lightening strike situation.

After all that Mikail has been through in his life. After all of the struggles and the incredible triumphs through those struggles, it is difficult to understand why God, in His infinite wisdom and love would choose to take him now. We find deep comfort in the knowledge that he is in heaven at the feet of Jesus. It is our deepest prayer that even in death, his life will inspire and encourage others, pointing to the gracious love he had for Jesus and that each and every one of us is worthy of that love.

2014: A Recap

After much prayer and a few years of waiting, we had the opportunity to move ‘home’ to Ontario to be closer to family.  We made the week long cross country move with our truck and a 24 foot trailer holding our worldly possessions. A modern day covered wagon trip back east. We made many stops along the way to stretch our legs, throw rocks into lakes, and  allow Mikail to ride his bike for a little while before getting back in the truck and continuing on to the next hotel. We arrived in Ontario in mid June and filled our summer with days at the beach, swings at the park, random drives to find parks to have picnic meals, and enjoying the warm Ontario summer, festivals, flea markets, and fairs to the fullest.

In September Mikail started Junior Kindergarten at a rural elementary school. His bus ride was about 45 minutes every day and most days he thoroughly enjoyed it. He discovered that the letters and sounds he knew so well could be strung together to make words. Learning to read was such an exciting time for us all. Gathering around his home reading book to discover what magical world the words would bring to us was enthralling, even for two year old Olivia, who didn’t want to be left out. Ever.

The early intervention programming in Ontario is quite different than it was in Alberta, so we navigated our way around this new way of doing things. Every two weeks Olivia and I would pick Mikail up from school early and head to the hospital in Exeter where we would all participate in his Speech and Language Therapy. What fun!

We were somewhat worried about Mikail starting school in a regular Junior Kindergarten Program after being in the PUFF Program in Alberta and soaking up everything he possibly could there. Our fears were unfounded. His teachers at Stephen Central Public School were stellar. They were considerate of his sensitive nature, but were able to firmly encourage him to take risks and learn new and exciting things. He absolutely loved the learning he did at school.

He made many special friends at school, but had an extraordinary connection with his friend Brette. Everyday his backpack would come home stuffed with construction paper creations the two of them made together. They apparently even ‘got married’ and invited none of us. When we asked Mikail about this he rolled his eyes and said ‘It was a Lego wedding! It wasn’t for real. We built a house and had to get married before we moved into it.’ As though, ‘Come on, Mom and Dad! Get with the program.’

Our move to Ontario also meant that we got to spend more time with family and this was the number one goal. What fun our summer and fall was: family time, birthday parties, festivals, flea markets, ice cream runs, fireworks. An extended weekend at the cottage, Thanksgiving, and Christmas.

Although our move went quite differently than we had imagined, the memories we have of the first months in Ontario are fantastic.

Mikail has been in Preschool for five months now. He loves it!

It's taken me a bit longer to get used to the idea of me not being there for his therapy sessions and as a result I feel like I am 'in the dark' a lot of the time. As time has gone by I have learned more about his programing. He receives whole group Speech and Language in the classroom setting four days a week. I was able to go to an evening where snippets of a day in preschool were shared by walking through a typical day with the kids. I was quite impressed. Besides this, he gets pulled out of the classroom for 30 minutes of 1:1 Speech and Language Therapy twice a week. This is awesome. This is 8 times as much 1:1 professional speech time he received before starting preschool

Because Mikail has a motor speech disorder (Childhood Apraxia of Speech) it is essential that he does some form of speech practice every single day. It's taken a while for us to receive homework for him to do, but now we are in full swing.

One great thing about the Preschool he is in, is that there are parent sessions you can sign up for to help you with your child at home. For us the need is Speech and Language related, but there are sessions for other needs as well. Because this is a government funded program, we have to take part in 3-5 sessions per year. There are so many great ones, I think I signed up for ten. You bring your child to each session and learn, hands on, activities to do with your child to help them succeed. It's really quite something.

The main reason I love these sessions is that I am the type of person who hungers for knowledge in helping Mikail. Yes, the internet is full of ideas, but truthfully the internet and the bloggers and the websites out there don't know my child. I feel as though I need to be gleaning the knowledge I need to better assist Mikail from the people who work with him and know him.

At home we strive to create a language rich environment. We do this through stories, through play, through technology and simply through conversation and modeling. I am truly amazed at the strides he is making. So wonderful. I am so proud of him and the hard work he does every day. Not to worry, he is still a typical three year old and challenges us as parents in all the areas a growing preschooler challenges adults as he tries to make sense of his world and place in it.

The learning is never ending.

And that is how it should be.

Today I send my three year old off to College...

 ...or so it feels. I know, it’s only preschool, but it feels like it is the beginning of the ‘letting go’ part of being a Mama. I can’t believe my baby is going to school already. I always thought I’d have him at home until he was 5 years old and perhaps longer with the option of homeschooling, but sometimes things happen and your vision of what you thought would be, changes. So, I know it is going to be sooo good for him. Yet, I long to be there and protect him and guide him and keep him under my wing. BUT it’s going to be so good for him. Can you hear me convincing myself? Ha. But it's true! The things he will learn, academically and socially. I can’t give him all of that at home considering the additional challenges he needs to overcome with the Developmental Apraxia of Speech diagnosis. I feel that we are incredibly blessed that he is able to go to this preschool specializing in his specific needs.

At the same time, my Mama heart aches today as I hand his care over to someone else for a few hours every day. I am so thankful that Mikail has a Heavenly Father right beside him, protecting him from all the things that threaten to keep a Mama up at night with worry and debilitating anxiety. In this ‘letting go’ stage I am learning to entrust Mikail to God on a whole knew level. He is, first and foremost God's child given to us for whatever amount of time He chooses. So once again I release him into God’s protective care. In doing so I am learning that God will shower blessings on him that I can’t give him on my own. I am after all just a human with the best intentions and the biggest heart for my baby, but still, just a flawed human with an amazing flawless Heavenly Father.

So, now as I we have left him in the hands (literally) of his preschool teachers (he cried and cried when it was time for us to leave), I cling to this promise that God is with my Mikail.  God is showering blessings on him right now. And God's presence is with me here as I shed my Mama tears and try to relax and place my trust in Him over and over again.

I originally posted this at Living in the Moment.

Seventy Times Seven

June 6, 2O13

My dear Mikail,

I am sitting here at the hospital in the waiting room while you are in the OR under anesthesia having your teeth worked on. Sitting here I see doctors walking by to the doctor's lounge and I saw the doctor that delivered you. He looked at me, but I was just another face in the Hospital to him. He's so much more than 'just' a face to me. Oh the emotions that well up inside of me. Part of me believes that if someone else had delivered you, you wouldn't have had the stroke and the hard time learning to walk and talk. You also would not have been on phenobarbital, causing your teeth to be problematic. The human side of me wants to blame it all on this doctor's decision, yet that is not right. I know he is an excellent doctor. I know that he made the best decision he could at that moment in time. Yet, I am human and I get anxious and my mind fills with less than loving thoughts when this doctor walks by. Jesus commands us to forgive 70 X 7. And it doesn't mean we stop at 490 times. We must forgive over and over and over again. No matter how difficult it is or how hurt or angry we are.

You, Mikail, are YOU and all of these experiences early in life have helped shape you into the little boy you are right now. They have made you a fighter and have made you brave. Without all of this happening you wouldn't be the boy you are right now. You would be different and I don't want to change a thing about you. I love YOU just the way YOU are. So, instead of lingering on the unloving thoughts that sneak up in my heart when I see this doctor, I choose to forgive, the 491st time.

You are only three years old and already you are the most amazing, hard working, joyful, brave little boy I know. You have taught me more in the three years of your life than I ever learned in the 33 years before you came into our lives. Keep your heart open and brave, ready to forgive and always, always on Jesus.

I love you, my handsome boy.
Your Mama forever.

Brave

When you're scared

but you still do it anyway,

that's BRAVE.

~Neil Gaiman~

June sixth was the day where I woke up at 5 a.m. to take Mikail to the Hospital for his dental procedure. He woke up happy as can be. Thinking that the sun would be sleeping still when we got up, he was a bit disappointed that it was up already. So clearly he was not worried about what was before him. Unlike his Mama who was clinging on the promises of Jesus that her boy would be okay. That there would be no allergic reaction to the anesthesia and he would come out of this with regular white fillings and not a smile full of silver crowns.

We headed to the hospital and had to enter via the E.R. since regular admission wasn't open this early in the morning. Mikail happily coloured a few Mickey Mouse pictures with his invisible marker until we were brought to his room, changed into hospital pjs and then settled into a the iPad for a bit. We were then escorted down to the O.R. holding area where he was given a drink of tylenol/dopamine, which he thought was juice and promptly spit out half of it when he realized it was yucky (bitter). Whatever to into him did its work and he was partially sedated by the time we had to go to the O.R. Let me tell you...a three year old is hilarious when on dopamine. Loopy! He too giggled a lot because it felt so funny to him.

The hospital staff was amazing. They allowed me to go into the O.R. with Mikail. I carried him in and laid him on the table. Held his hand, kissed his cheeks and whispered Mama love into his ears as they tried to get an IV into him. Like me, the veins in his hands are tiny and they burst one immediately. So, they went to his foot which worked great. He was calm and happy when I left to wait in the waiting room. 

The pediatric dentist came to see me within about 40 minutes and all went well. A lot of the discoloration on his teeth was stain due to the medication he was on as well as vitamins he took. She polished those and then they filled the three cavities (I thought there were more, but they were just stains) with white filling. Crowns were not needed. Thank You, God!! He got through with the anesthesia no problem, but would be 'out of it' for quite a while. The anesthesiologist was going to sit with him until he woke up and then they would come and get me.

I was able to ask the dentist a few questions about the cause of this and learned that newborns who are sick for the first month of life have a different type of bacteria in their mouth that often allows acid to eat away at the teeth more than the average person. THIS is what she believes happened in combination with the use of the medication he was on. She said that the rest of his teeth are super healthy. There are no issues and just to keep brushing and flossing as we are. She even said we didn't have to floss until his teeth grow closer together. Right now his teeth have gaps between them BUT I am still flossing daily anyhow. No playing around with this. It just felt so good to here a confirmation that this was not our fault as parents. I knew that in my head, but my heart needed to catch up. It has.

Within half an hour Mikail was wheeled down to my waiting room. He was sitting in the lap of a sweet nurse and we went up to his room where he sat in my lap and we played games, sang songs, and watched Max and Ruby while we waited for the next two hours of observations to pass by. Jason also came around this time, as did Butterfly (the pediatric clown) who gave him a 'surgery bear' for being brave. She also got his Bravery Beads going (more on that another time) and once we were released, Mikail got a ride in her car with her. So fun!

He's doing great. We went out for icecream on Saturday and he was so excited that he could eat some too. Usually he says 'no thank you' to icecream. It was too painful to eat for him. Now he proudly said 'Mommy. Teeth no more cold. Warm teeth. Yummy icecream!" That's a whole lot of talking for our little guy who five months ago only said single words and preferred sign language.

So happy to be on this side of June 6th. So happy that our little guy is so very brave.

Appointments

At the end of April Dr. Watt, the Physical Medication doctor came to Grande Prairie to see some of his patients. He comes twice a year but we always only see him in Spring. The appointment was at 11:30 a.m. I was there at 11:25 and Jason arrived from a job site at 11:33 and the appointment was already done. Dr. Watt was once again amazed by Mikail. He said that the only physical sign that he had a stroke at birth is that when you check the reflexes on his feet, his toes point down on one foot and up on the other. All this indicates is that one side of the brain is weaker than the other. In observing his walking, running, jumping and climbing there was no evidence of a stroke. Praise God!!

*     *     *

We haven't been to see Mikail's Neurologist in about a year and a half, so his follow up appointment was to be around his third birthday. We drove the five hours to Edmonton to see the doctor at the Stollery Children's Hospital only to find out that the only contact we would actually have with the Neurologist was me accidentally bumping into him with the stroller and apologizing. I guess that isn't totally a bad thing because it means he is doing well enough to only be seen by the Nurse Practitioner. Still, I was disappointed.

The appointment consisted of us answering a few questions and updating what has happened in the past 18 month, Mikail walking and running for the Nurse, and a quick physical exam.

I walked away from that appointment feeling as though it had been a warning of the extremely tough years we have ahead of us in the school system and that we should keep as much information about his history to ourselves as possible. Being a teacher, myself, I was blown away. Having worked with many different types of students with many different types of needs, it was the parents who kept things from me that I always felt were also keeping their child from receiving the best education possible. So, this confused me a bit. I guess it is a matter of 'wait and see' and if it is really as horrible as she made it out to be, well, then there is always the option to Home School.

*     *     *

Other than that he had his yearly physical and all is well. I am thinking I should make an appointment with his pediatrician as well as get his ears and eyes checked. Going to get through this month first and then we'll add more to the roster of life.

Long Term Affects of Anti-Seizure Medications

I am hesitant to write this post because we feel complete judgement from people (mostly the medical community) about this, but I want it out there so that if anyone else out there has kids on medications, they will take extra precautions that we weren't aware of.

For the first six months of his life, Mikail was on an anti-seizure medication called Phenobarbital. He got it at 9 a.m. every single morning and it was an oral, sweet, syrupy medication.

Looking back, Mikail probably started teething around 3 months of age because suddenly we noticed he had these giant top front teeth. We didn't think much of it since we had been wiping his gums from day one and then went to brushing his teeth twice a day.

A few months ago, I lifted his lips and noticed a shocking amount of decay on the top front teeth near the gums and we immediately took him to the dentist who booked him in for dental surgery. They don't do dental work on little kids like that without general anesthesia. The feeling at the appointment? JUDGEMENT for not brushing his teeth and blame for giving him a bottle in his bed. Which NEVER EVER happened. He has never had a bottle in his bed and only had his first taste of juice after his first birthday and in a cup at that. He was off the bottle completely by the time he was 11 months old and onto cups and sippy cups.

I felt a huge amount of "Mama Failure" because of all of this, knowing that we had done everything right, but it still happened. I went down the road of trying to find answers and found out that the use of Phenobarbital can weaken teeth and cause early decay. Sigh. I had this confirmed with his Neurology Nurse Practitioner. She said that they see it quite often and there's nothing you can do about it except treat the cavities. She also assured me that this does not mean that his adult teeth will be bad. Baby teeth are soft and easily damaged. Adult teeth are a lot stronger.

Anyhow, there was a delay (clerical error, apparently, but whatever) and the surgery that was to take place in February is now taking place in June. Yesterday I took Mikail in for his pre-op visit and because we have a family history of Malignant Hyperthermia (a life threatening reaction to some general anesthesia) we had to have a little visit with the head of anesthesia. Over and over and over again he kept saying (to Mikail, but really to me, because whose 3 year old brushes their own teeth? Ours attempts to after we do the actual brushing so that he does learn, but we do the 'real' brushing). Anyhow, the anesthesiologist kept saying, "Mikail, you need to brush your teeth, so you don't land back here again" or "Brush those teeth, Mikail!" JUDGEMENT.

"Mama Failure" was in high gear yesterday. Tears were shed. Guilt and anger set in for a bit. I just wish people would get the whole story sometimes and not just go to the obvious AND have some compassion on our tender Mama souls~especially after waiting two hours to see the anesthesiologist DURING what would have been the kids nap time. I felt like I needed an award after that afternoon, but instead I felt judged and like a Mama failure. We were definitely going through the Tim Horton's drive thru for a coffee with high octane cream (instead of 2 milks) and a snack pack of Tim Bits. When we got to the window to pay, the cashier said the lady in front of me had paid for my order. Of course, my tender Mama soul burst into ugly tears and was just so grateful for this $3.85 cent gesture.

Anyhow, the long and short of it? If you have a child or infant on oral medications, please, please take extra precautions so as to avoid this kind of added stress to your child's life.

If you think of it, also pray for Mikail as he is put under general anesthesia for the procedure. That he does not not have a reaction to the anesthesia and that all will go well. We don't know what the procedure will all entail since they don't quite know the extent of the damage. If it's not too bad they can clean the area and fill it. If it is quite bad then they will clean and fill and put silver caps over the damaged teeth. If it's really bad, they will have to pull the teeth. Please, please pray that it's just plain old fillings. Kids can be so mean and for him to have a speech disorder AND a smile of silver front teeth (or no teeth) just breaks my heart. (Enter big time Mama Guilt).

Testing...Testing...1...2...3

Wow! This past month has been filled with a lot of testing. We waited until after his birthday to do the testing so that a more difficult test could be administered, ensuring his entrance into the preschool. So after the big birthday party, the testing began:

Physiotherapy tested for gross motor development.

Occupational therapy tested for fine motor development.

Speech and Language therapy tested for speech and language development.

It's been hard on us. Stressful for Mikail and tiring for me. Wanting him to do his best and hoping for miraculous test results, but at the same time wanting things low enough so that he is eligible for Program Unit Funding (PUF) that would get him into a preschool that would cover most of his physical and speech needs. This preschool is run in several local public schools and consists of other 'PUF kids' but also kids who aren't eligible through PUF. Just parents choosing to send their kids to an educational based preschool.

Well, the results are in. He falls into low-average for gross motor skills. The physiotherapist believes he would be average if his character was a bit more outgoing and he was more aggressive. He has always been a sensitive, 'safe', reluctant to try new things kind of child, so when you ask him to walk a balance beam, he won't until he's ready on all levels. She wasn't concerned since he always reaches his milestones in his time.

Fine Motor Development is coming along good. He is average for his age. Normally kids pick whether they are left or right handed by the time they are four or five so they weren't too worried about that, since he's three. I am, however concerned because he uses both hands but I believe he is naturally right handed. You give him a ball and he will always throw it with his right hand. Since he is so sensitive and is a perfectionist, I asked whether it would make sense to encourage him to use his right hand when it comes to things like colouring and using scissors. If he becomes adept at it with one hand then the frustration will be less and he will feel more accomplished. At the beginning of the appointment she said it didn't matter. By the end, after observing him, she wholeheartedly agreed with me.

Speech and Language. This is where the stroke has affected him the most. If you have a line up of 100 three year olds, child #1 struggling the most, child #50 being average and child #100 being wayyyy above average, Mikail would be child #1 when it comes to Phonological Development. He has a Severe Phonological Delay (delay in learning the speech sound system). When it comes to what Mikail says, he has a Moderate to Severe Expressive Language Delay. He would be child #5 (or in the 5th percentile). He has age appropriate receptive language skills (what Mikail understands) and would be the 61st child in that line-up of 100 children (61st percentile). These results TOTALLY reflect our reality. Mikail understands wayyy more than we think he does, but is unable to express himself as the average three year old does.

So those are the test results. They definitely get him into the preschool program, which is awesome. Yet, my heart breaks for him~communication is so difficult. In the past couple of weeks I have really seen this start to affect this sensitive little boy's soul. He has started to adamantly say "NO" when someone other than his 'safe circle' talk to him. His Speech and Language Therapist says that this is because it is not safe for him. He is very reluctant to talk if he perceives there is any form of 'risk'. It's not that he doesn't understand you. He is afraid that you will not understand him and he doesn't like that feeling (neither would I), so it's easier to just say "NO" and stay safe. The fear I have of this is that it sounds like he is an oppositional child, which he isn't, and then people will write him off. Sigh.

The other day Jason said something to him and I think he understood, but didn't know how to respond to him, so he kept saying 'NO' and got quite emotional. Cried and cried and cried. His little heart was so sad and that was within his 'safe circle'. I pray that it just gets easier in the months before Preschool starts and that when he goes the kids will be compassionate with each other, not mean.

So, that's where we are at with the testing. Waiting on the Open House letter from the Preschool so we can go and visit in June. Then it will be enjoying the summer together before he is off to Preschool in September.

Update Time

It's been six months since I last posted. Time flies.

The group speech thing wasn't as successful as I had hoped, but in my readings I found that kids with Apraxia don't usually make much headway in group speech therapy settings. When we went back to one on one Speech Therapy in January I requested that Mikail go two or three times a week. We went twice a week for two months and then back to once a week now. The headway Mikail made in this time is incredible. In one month he went from clearly saying a dozen words to over fifty. I have now stopped keeping track because his vocabulary is growing so quickly. Basically he went from the speech of a 12 month old to the speech of a two and a half year old in the span of about a month. So great.

As it is with kids with Apraxia, they hit a wall now and again and it seems we are hitting one now. So, it's time to take a bit of a break and let him find his comfort in the place he is at right now. We are still going to Speech Therapy once a week, but not pushing as hard as we were when he was soaking it all up.

This week he had his pronunciation assessment done for the Government Funded Preschool Program that we hope he will get into. The rest of the testing will happen mid May. The sad thing about this all is that the testing needs to come in as 'bad'. He needs a 'severe phonological delay' to get into this program. So although we are wanting him to make huge gains, we need the tests to come back showing a severe delay so that he will be able to receive the education he needs through this specialized preschool program.

Part of me wants him to NOT get in. He's not even three yet. I never thought our kids would go to preschool. I wanted them to be home until Kindergarten, but this is not about me. This is about what is best for Mikail, so whatever happens will be about him and what's best for him. He just seems so little to be off to school already. (insert Mama tears)

What else is new? Next week we get to go to the PhysMed Clinic to see how he is doing physically. He hasn't seen OT or PT for months, so I am curious to see what they will have to say. Dr. Watt comes out from Edmonton twice a year to see the 'graduates' of the Glenrose Rehabilitation Hospital. Mikail only sees him once a year since he is doing so well and that is also the reason there has been no PT or OT for a while.

In mid May we are also off to the Stollery Children's Hospital for Mikail's follow up clinic with Dr. Yager, his Pediatric Neurologist. Lots of things happening around his third birthday. But we expect that he will WOW everyone again.

So that's it for now. Doing awesome considering the initial prognosis. Working very hard at catching up on Speech.

Childhood Apraxia of Speech

For a while I have thought that there is something more going on with Mikail's speech (or lack there of).  People just keep saying that boys are slower to develop speech...blah...blah...blah.

For the past five weeks Mikail has been going to a weekly Late Talkers Play Group.  In the first four weeks I noticed that the words 'motor movements'  have been used and I finally Googled them and found nightmarish possibilities of what this could mean. The Internet can be so wonderful and so horrific at the same time. Instead of continuing to read what I was finding, I emailed Mikail's Speech Pathologist and shared my findings and in conjunction with his MRI report think that there is more going on than just a speech delay, but needed her input and advice.  She called within minutes and we had a wonderful conversation.

Without having done the formal assessment, she believes (and I totally agree with her) that Mikail has what is called Childhood or Developmental Apraxia of Speech.  Sounds scary, doesn't it?  Here is a good defenition of this disorder:

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. (Source: www.asha.org)

Considering Mikail's stroke at birth and how it affected his brain as well as the way he is learning to speak, this motor speech disorder makes 100% sense.

Truth be told, it broke my heart. I think I wanted to believe that he just had a speech delay due to being a boy etc. etc. But I knew better. Deep down inside, I just knew there was something else going on. Yet, it just breaks my heart into a billion little pieces and throws me right back to May 8th and 9th of 2010. I just wish I could go back and re-do and un-do what happened in those 38 hours of labour. I wish I could go back and make more informed decisions. I wish I could go back and NOT trust the doctor who delivered Mikail.  Most of all I wish that I could just forgive and move on, but just as I think I have forgiven, I see that I must do it again (and again, and again). It breaks my heart because Mikail did nothing to deserve this. He has to work so very hard at something most of the world takes for granted.

Once I had my Mama Pity Party, I was hit with the reality that Mikail WILL speak one day, just like when he didn't sit up, we knew that one day he would. When he didn't roll over we knew that one day he would. When he wouldn't crawl, we knew that he would and when he wouldn't walk, we knew that he would.  And one day? One day he will talk, but it will take a lot of work just like all of those gross motor skills took a lot of work to get to the final product. Most of all the reality hits me that the original prognosis was that he would NEVER walk or talk or eat on his own. He would be wheelchair bound forever. So then, when I remember this I feel guilty because truth be told we are so incredibly blessed with this little boy who prefers to use sign language and gestures at the moment. And no matter how frustrating that is at times, we are blessed that he is an incredibly smart little boy who has already shown us that he can work around this disorder and communicate with us in his own way.

So, what is the plan now? The plan is to finish this Late Talkers Play Group and start a Motor Speech Play Group in November. Then in January he will start one on one speech sessions with his therapist and we will most likely top those up with additional private sessions. The Government of Alberta only provides one session a week and CAS kids respond faster when they have 3-5 sessions a week. Then in spring of 2013 he will be formally assessed and Brenda, his therapist believes he will still have severe phonological delay and be eligible for Government funding for Preschool in September that will address his phonological needs in addition to private Speech and Language Therapy that will be one on one. That is the plan. It is good to know that there is a plan.

Looks like this blog isn't going to be ending any time soon, as I thought it might. The challenges and joys and triumphs of having a child who had a stroke continue...

A Life of Charades

I am probably wayyy overdue with an update on Mikail.

Since my last update, in April, we have added Olivia to our family. She was born two days after Mikail's second birthday and everything went super smoothly. To prevent a possible recurrence of Mikail's birth experience we had a planned cesarean birth with Olivia and we are so thankful we did (even though I had my own things to work through to get to this point).

After Olivia's birth, Mikail had his (expected) relapse with potty training and we are just getting back to normal with that all. Because he was potty trained so young, we expected he would relapse after her birth and probably until fall when life got back into routine. We were right.

Mikail has continued Physiotherapy, Occupational Therapy, and Speech and Language Therapy over the spring and summer. Physio isn't really needed anymore, so his file is still open, but the PT doesn't come to sessions anymore. The focus is mostly on Speech and Language with sprinklings of O.T. thrown in.

Truth be told, I have shed a lot of tears over his Speech and Language. We knew it would most likely be difficult for him after his stroke AND being a boy (they are proven to be slower with language development).  The upside (and downside) is that he has incredible non-verbal communication skills and his receptive language is through the roof.  Why do I say (and downside)? Because it is extremely exhausting to live life playing charades. He acts everything out and has gestures/signs for everything. It's 24 hours of guessing games. Yes, in the grande scheme of things, this is wonderful, but this tired Mama would LOVE it if he could verbally tell me things.

The upside is that when we go to Speech and Language Therapy he catches on to things really quickly, so the Speech and Language Play Group that he will be starting next week will be great. This is a 'late talkers' group and then in January or February he will join the 'early speech' group.

With Jason's new job we just got new Extended Health Benefits and they are wayyy better than what we had before. This also include Private Speech and Language Therapy. We are not quite sure whether we are going to take advantage of that just yet, we might wait until after we see how he does in these play groups.

This coming spring Mikail will be formally assessed and depending on the results, he may just qualify for the Alberta Education Program Unit Funding for language needs.  That would mean he would get to go to the public pre-school program next fall.  I think that would be really good for him, language wise, but also socially. He is a by-stander and needs to become a participant when it comes to socializing. I know, he is only two and has a long way to go before kindergarten, but still, I want him to have some of those social skills down pat. In this program he would receive pre-kindergarten curriculum instruction and specialized instruction targeted toward his individual language needs.


But...let's see how this fall and winter go first. A lot can happen in these months, but that is where we are at right now.
Off to play some more charades...

PhysMed Clinic

Six months ago we were in Edmonton for what was our last appointment at the Glenrose Rehabilitation Hospital. At that time we saw Dr. Watt, a pediatrician and a physiatrist and were told that he would see us in his 'out of town program' in April. April is here and Mikail had his appointment with Dr. Watt yesterday. It was so nice not to have to drive the five hours to Edmonton, stay in a hotel, and then drive the five hours back, just for a 15 minute appointment.

We had quite the team at the appointment. Mikail's physiotherapist and speech and language therapists were there along with another physiotherapist and two physio students. Then there was Dr. Watt and his nurse. I was able to sit in such a way that I was able to see Dr. Watt's computer screen when he pulled up the initial MRI images of Mikail's brain.  He kept flashing through them, back and forth, back and forth, shaking his head and muttering words such as 'amazing' and 'unbelievable'. I too saw the images with the damage quite evident. The images do not match up with the little boy that was running around chasing balls and socializing with others in the room. There is no visible physical evidence that Mikail had a brain injury and any stimulation given to his legs, feet, arms and hands reflect the same. As we know, he is delayed in expressive speech, but not in receptive speech. Although he is not expressing himself verbally like other kids his age (just yet...we keep being reminded that he is also a boy and boys are 'slower' in speech often), he is communicating quite well in a combination of the use of vocabulary, sign language, and gestures. Dr. Watt didn't seem worried but made sure that his Speech Therapist will formally test him in about a year. He was utterly shocked that Mikail is potty trained before the age of two.

It was so great to see another doctor be shocked at the miraculous little boy we have. What a testimony to God's healing hand.

We will see Dr. Watt next April when he comes for another visit to town. He didn't see any reason to see him in six months. Hooray!

"Finger Licking Fun"

I haven't updated here in a while, but thought I might should do that again.

Things are moving along in the areas of development for Mikail. Although we have been seen by a physiotherapist, occupational therapist, and speech and language therapist for about 22 months now, the focus for the first 18 months was physiotherapy. We have made a shift in therapies in the past few months. He is caught up to his age in the area of physiotherapy and the shift has gone to intense speech and language therapy with sprinkles of PT and OT in there.

Mikail has always been a cautious little guy and taking chances is a huge deal for him, so speech has been a slow go for him. We started teaching him basic American Sign Language signs starting at six months of age. By twelve months old he was using those signs on his own to communicate. We've added words of interest to him, but lately we've noticed that he prefers to sign over speaking. He will even make up his own signs if we don't teach them to him. Kinda cute. Kinda NOT what we wanted. But, we were reminded that it is good to give him those signs. He wants to label his world and the words will come with the signs in no time.

At our last therapy session Mikail's Speech and Language therapist shared that she wonders whether Mikail is slightly tongue tied. He is very reluctant to use sounds such as d,n,l,z,s etc. All sounds that can be hindered by being tongue tied. In her assessment of his mouth, which was difficult to do, because what little boy like someone playing with your tongue, she couldn't be sure. So, in the next weeks we are to do a lot of 'licking' activities to get that tongue used to moving around outside of his mouth. If there is still concern at our next therapy session, we'll see a specialist and see if anything needs to be done. Praying we can take care of the issue with some of this 'finger licking fun'. If it is just Mikail being reluctant, then we will be able to take care of this ourselves. If he is tongue tied, then nothing we do will really help.

This afternoon we worked on licking a sucker (sorry for the poor photos...I only had my Blackberry on hand at the moment):

Mikail's Nana had teeny tiny icecream cones when we visited at Christmas. She got them in the U.S.A. so next time she crosses the border she is going to pick some up for us. Mikail should have fun licking those :)

In other news? We have started the potty training process with Mikail and let me tell you, it's a p.r.o.c.e.s.s.

I have blogged about it here and here.

18 Month Update

Well, we did it. We made it through a long, long day of appointments with specialists in Edmonton.

First we arrived in E-town on Sunday afternoon and got to our hotel after supper. Just in time to enjoy some time in the pool and get Mikail to bed an hour late, as per the instructions for the EEG the next day. He was so over-tired that he only fell asleep three and a half hours after his regular bedtime. :(

We stayed at the Holiday Inn Express Downtown so that we were located right between the Glenrose and the Stollery. The hotel staff was amazing. Mikail got a couple of tub toys from them and we got a treat bag for us. NICE. Little gestures sure make a difference. One of the reasons we chose this hotel is because it includes a hot breakfast bar in the room rate, which made Monday morning a lot easier for us. We didn't have to bring breakfast with us or go out and find a restaurant at early hours of the morning.

We got to the Glenrose at 8:15 a.m. and saw Dr. Watt, who is a pediatric rehabilitation doctor specializing in neonatal brain injuries. He comes to Grande Prairie twice a year to visit patients who are along the road of recovery, so that we don't have to make the drive out to Edmonton. He was shocked at Mikail's progress and said that he thought it was sufficient for us to not have to come to the Glenrose anymore, but just see him in Grande Prairie once or twice a year. (YES!)

Playing at the Glenrose.

In addition to Dr. Watt, we saw the audiologist who once again confirmed that Mikail's hearing is normal. We will continue to have his hearing checked every 6 months in Grande Prairie just because I have congenital hearing loss and they want to watch him just in case.

We also saw the Physiotherapist and Occupational Therapist who were both astounded at the progress Mikail is making. He is right on track for a 'normal' (what is 'normal' anyhow?) 18 month old. (YES!) Of course we will continue with PT/OT/Speech and Language because it just can't hurt to have that extra support.

Playing at the Glenrose.

Then we saw the Pediatrician and the Nurse Practitioner, who were also blown away by Mikail's progress. I love getting little nutritional tidbits from the Nurse Practitioner. Things I wonder and can get answers to. Love that.

Lastly we saw a Pediatric Psychologist. Let's just say that with my history of teaching for ten years, I highly dislike psych tests on children. This one, once again proved to me how silly they are. Ten minutes with a strange man playing even stranger little games that magically put you into a certain psychological age bracket? Whatever. Once again, the results gave us nothing to worry about, but I still highly dislike these tests.

Then we were off to the Stollery Children's Hospital for the EEG. We got there in time to eat a quick sandwich and then found the EEG room. Funny how familiar a large hospital can become after only 18 months and we don't spend as much time there as many people do.

The EEG at the Stollery.

Mikail did great during EEG and prep time. I thought he'd have a fit when they put the cap on his head, but he was fine. He didn't like the feeling of the gel going into the holes in the cap, but a quick find of the soother (that he gets only at bedtime or emergencies like this) and he was fine.

After the EEG we had one and a half hours to kill before we saw Dr. Yager, the Neurologist. We did a lot of this:

Mikail running around (and Daddy chasing after him) at the Stollery.

Our visit with Dr. Yager and his team (it's a teaching hospital so there were three students, his nurse, and the doctor himself) went well. They were very thorough and we could hear all the little extras since the nurse was 'teaching' while the exam was happening. Mikail loved 'flirting' with all the pretty ladies. When the team returned with Dr. Yager we were told that physically Mikail is caught up to where he should be at his age. (YES!) Now it's time to watch for cognitive issues. Most likely there will be none. Perhaps there might be some difficulties when school starts, but many average kids have difficulties in one or two subject areas. The goal now is to give him the most 'normal' toddler years we can, which Dr. Yager said, that from observation, he is getting anyhow. We aren't the type of parents to coddle him. (True) So, the goal is to let him be a toddler and do the toddler things that toddlers do.

We will see Dr. Yager again when Mikail is three and see from there, but his guess is that we'll see him at age 3, just before school starts and then just before Jr. High starts (puberty and raging hormones--fun, fun!)

We are sooooo grateful. I was on the verge of (thankful) tears all evening. I must have cried a handful of times over dinner. I could blame it on pregnancy hormones, but truthfully it comes from relief after 18 months of hard, hard work, seemingly paying off. It comes from the relief of hearing that Mikail is a 'normal toddler'. It comes from a very thankful Mama heart.

Since we were told to live life 'normally' from this point forward, that is what we are going to do. That also means that this will probably be the last entry on this blog for a while. Perhaps in 18 months I will write the 3 year update, perhaps not. BUT I promise to continue on the blog where I write more regularly. So, if you want to continue following, add this link to your bookmarks:

www.jasonandirisparr.blogspot.com

Life continues there.

Wow!

It's hard to believe that in the past 18 months we've come from here:


to here:

Wow! Feeling truly blessed.

Still, rather nervous about Mikail's 18 month appointments that are coming up in Edmonton. We'll see everyone at the Glenrose Rehabilitation Hospital again and then rush off to the Stollery for an EEG (since one hasn't been done since he's been off phenobarbital), and then wait to see the Pediatric Stroke Neurologist.

Keep checking back for an update in the next few weeks.