Friday, February 27, 2009
In past years I have given up behaviors rather then things. The way I see it is Lent is to better yourself. I can give up chips, chocolate, tv, but really, I want to give up something I will never never go back to. Quite frankly, I know I could give up things for 40 days, but I know me, I will go back to them. So instead, I have tried giving up behaviors to try to be a better person.
Previously I have given up taking the Lord's name in vain. I was the worst at staying OMG. Now I say gosh all the time. I like it better. So much nicer on the ears and better to hear repeated by little voices.
It took two years of giving up swearing for it to really get there. I am still working on it, but am so much better.
I was driving the boys to school this morning trying to think of what I should give up this year when a car pulled up beside me at the light. The young man had a hand flipping the bird hanging from the rear view mirror. I thought, what a horrible way to start the day! The first thing you see before you even hit traffic is negative and all the cars that see it could send you negative vibes. YUCK!
Then I thought about my morning, and all my mornings. I am NOT a morning person. In fact, I am a night owl. I would much rather stay up until 2 am and get up at 10 am. That works well for me. Of course that does not work with kids. The boys go to bed well and around 7:30. That means they are up early. I have tried changing that, but they are just early risers. They will never be kids to sleep until 8.
So I work on going to bed at a better time, but I am still tired in the morning. Matthew is prone to nightmares and rarely sleeps all night long. In a good week, I get two nights of uninterrupted sleep. On average, I am up twice a night.
That makes for one grumpy mommy in the mornings.
And I thought about that as I saw the hand flipping the bird. I do start out my mornings tired and grumpy even before I get in the car. I need to change that.
So, for Lent this year, I am going to try and embrace the mornings. Smile and be happy for the kids. Give them a boost first thing every day, even if it is 6 am.
Wish me luck, this one could be on the books for the next few Lent's.
Thursday, February 26, 2009
When he settled a bit, I did some reading and decided that Matthew was a spirited child.
When he was a bit older, I did some more reading and decided he was a spirited toddler.
When he was even older, I read a book called Raising Your Spirited Child by Mary Sheedy Kurcinka and cried when I read the case studies, this was my child.
Then we started Matthew in preschool. He had a lot of issues and needed a full time aid to keep him from running out of the building and working with him to get him involved. The first day, after 5 min of observation, the coordinator asked me if he had Sensory Processing Disorder. It was the first I had heard of it.
Looking back it made sense. To name a few, loud sounds would send Matthew screaming and crying from a room, often taking cover under his crib or behind the rocking chair in his room. He still covers his ears when Happy Birthday is sung. He never liked to finger paint. Ever. Would not touch his fingers to it.
I don't think Matthew has full blown Sensory Processing Disorder, but he definitely tests on the high side of normal and it sure explains a lot. Thankfully, he was able to work with an O/T once a week all last year to help him out. It did wonders for him.
Which takes me to this morning.
Matthew was dressed and we were going to head out the door for school when he went to the bathroom, yet again. I followed him and he was washing his hands, again.
"Mommy, my hands stink and I can't get rid of the smell." Wash, wash, wash.
He leaned over for more soap.
"MOMMY! It's my shirt! It stinks!"
I smell it, nothing and I tell him that.
"MOMMY! You don't know but it STINKS!!!!!" Meltdown eminent in 5...4...3...2...
"Let's change your shirt." Meltdown on hold...
New shirt still stinks according to my sensory child. We decided that maybe some of Daddy's cologne will help. It manages to fool him for a few minutes until we are getting boots and jackets on.
"Mommy! Now my mitts stink! And my jacket!"
I push them out the door, the icy cold air stops his complaint for the moment.
Now we are in the van driving.
"Mommy! Now my hat stinks!" Off comes the hat. "And my mitts!" Off come the mitts.
"Matthew, it is really cold, you need those on."
Meltdown commences. Screaming, tears, kicking feet, flailing of the arms. Then a split second of silence before I hear at the top of his lungs "MOMMY!!!! THE AIR STINKS!!!" Followed by retching sounds. Gosh, I thought he was going to make himself throw up at the thought of the smell.
All of a sudden my brain kicked in and I remembered the words of a friend (Thanks Lisa) 'Gum works well for sensory kids'
I pass Matthew a piece of gum. He chews. He settles.
He was calm by the time I pulled into the parking lot. He ran into class and started his day like nothing had ever happened.
Until the next time...
Now you have an understanding as to why I am worried about a full leg cast for 6 weeks.
Wednesday, February 25, 2009
I called her back and we are now booked. I called Craig and told him, his reaction was "I guess you really are going then". Ummmmmm YEAH!
The flight times are not the greatest but we had to go with the cheapest not the most convenient and seeing that Shriner's are paying, who am I to argue?
We leave early in the morning on Sunday March 29 and arrive back in Calgary Tuesday March 31 in the early afternoon.
Now for the hard part. I have to tell Matthew.
Tuesday, February 24, 2009
In the process of chatting with them, they have read some of my blog and were happy to read that Matthew not only runs, but plays soccer and does everything that other kids do. I realized that I needed to show them how well he functions so they can see how their own children may one day be as well. Yay! Feels good to give back to them!
So, here it is girls, here is Matthew running all out this morning racing his brother in the gym of the school. (Matthew is in the red shirt)
Alright, don't blast me, I know what I am going to say sounds selfish. He looks great running, can keep up with other kids, is doing fantastic. But... (there's always a but isn't there?)
Here is another angle of him running. If you watch carefully, you can see where he is compensating. He swings his arms with as much force as he can as well as both of his feet are now turning to the left of the screen because of the regression.
Don't get me wrong, I am thrilled that he is able to compensate and run and play soccer and do everything an average 6 yr old can. I am also relieved that we are going to see Dr Dobbs and find out what needs to be done to stop this regression and get him on the right track. If he is compensating this much at 6, I can only imagine what his gait will look like after puberty without intervention.
Monday, February 23, 2009
I am so thankful.
Winter Camping update.
Our first foray into winter camping was a HUGE success. First of all, we had fantastic weather. Sunny, clear blue skies, not a breath of wind and this was the view. At night it was about -10 C (14 F) and during the day was 6 C (43 F). Our trailer was toasty warm, in fact I was warmer then when we had the tent trailer out in the summer.
A weekend away was just what I needed. It was a quiet, relaxing weekend filled with fresh air and exercise. No one wanted to leave Sunday afternoon. In fact, the boys were desperately trying to talk us into just one more night. Guess we will have to get out again soon before Matthew gets casted. Who can resist this much fun?
Friday, February 20, 2009
I turned to the answering machine to see the flashing light, hit play and hear a voice telling me that he has spoken to Kristina in St Louis and our possible appointment dates are March 2, March 9, or March 30. What?! This is INSANE!! I just called Shriners last week about this time!
I am so shocked that I can't even call back yet, I need a few minutes before I call, I can't formulate a proper sentence yet let alone think of when all this needs to start.
One thing I need to take into account is Ryan's 5th birthday is March 18 and he will be having a party. Can't have Matthew and I away for that.
March certainly has become a significant month in our lives.
Thursday, February 19, 2009
Got going today, got the calls made to the campsite, packed the kids clothes and my clothes, got the menu made, grocery list made, and Craig brought the trailer in from the storage site. It is sitting out front right now.
Tomorrow I need to buy the groceries, warm the trailer, load it and be ready to go at 3:30. Yay! Getting out of the city just appeals to me right now. Quiet, hikes, tobogganing, hot chocolate, fires... what's not to love?
Craig pops his head in the door, one of the propane tanks is almost empty. Crap, so off to Costco he runs to get it filled. I can't do it, it is just too heavy for me. Get back, and CRAP! We have a flat! Picked up a nail somewhere and the tire is flat. Oh no!
So my wonderful, loving husband is outside right now, at 8:30 at night, with the snow coming down, taking the tire off so I can run it in tomorrow to see if someone can fix it ASAP. Otherwise, we are not going tomorrow.
Crossing my fingers.
Wednesday, February 18, 2009
These are the instructions...
“Go into your photo archive, pick the 4th folder in the archive, select the 4th picture in the folder, and write about it. Then tag 4 other people to do the same”
So, here is the picture.
Ahhh, such a fun day. This was September 2007, Matthew's first day of preschool. As you can see, Ryan was NOT happy to be left out of the fun. The crazy turn of events was that Matthew ended up being incredibly anxious at preschool and cried and cried every day for weeks and weeks. It wasn't until January that he stopped hiding under the piano bench to get away from everyone.
Good news is that after a year of working with his aide every day, his o/t once a week (for his auditory and sensory sensitivities) he is doing really well this year in kindergarten. In fact, his teacher says he is a positive leader in the class. Now THAT makes me one proud mommy.
Now for the rest of the fun. I have tagged the following four people. Even if you don't pass it along,I'd love to see your picture and the story that goes with it.
Sue at Dreams and Journeys
Sonia at Who Says You Can't Go Home
Tara at Too Much Information
Lisa at Urbane Bliss
And Jennifer and Jo, I know Sara tagged you as well so I am stalking your blogs looking for your photos!
Monday, February 16, 2009
When I was growing up, everyone around my house knew Alvin Law. Not sure if it was because he was sort of a local celeb in Saskatchewan, or because my older brother, who had Duchenne's Muscular Dystrophy (a terminal genetic disorder) went to Easter Seals Summer Camp with Alvin for many summers, as well as both being involved in the Telemiracles in Saskatoon.
I crossed paths with him again about 10 years ago. He is now a motivational speaker for schools, and he spoke at the junior high I was teaching at. He is very good at what he does. The kids were captivated. As was the staff. I actually had to leave the gym at one point... it hit a little too close to home and I needed a breather.
That was the moment that his photo in the paper brought me back to this morning. At one point in his talk, he asks the audience to close their eyes and he starts to play a song on the piano with his toes. You have your eyes closed. You hear beautiful piano music. You KNOW that he is on stage alone and playing with his feet, yet the wonder of that moment doesn't hit you until you open your eyes and actually SEE it.
Alvin Law had so many hardships and so many strikes against him, and yet, he found a way to do things that people did not think possible. He did them as only he knew how. With no arms, he did things with his feet. He knew nothing else in life. He just did.
I know, Matthew's problems pale in comparison to what Alvin faced, and still faces. But yet, in a small way, I related them this morning.
Matthew was playing in the basement. His laughter took me away from my morning coffee and paper. I followed it and found him at the foot of the stairs kicking a ball up to the top, laughing as only a child enjoying life can. He would drop the ball and up the stairs it would fly.
At first, all I saw was his foot. Standing on the side of it, twisted and unbalanced. It looked awful, and yet, he was doing as all 6 year old boys do. Then, I heard the ball hit the top and heard his laughter as the ball came back down.
Matthew taught me yet another lesson this morning. There are many paths to a goal. Sometimes you need to close your eyes and listen. The laughter tells you when to open your eyes to the wonder.
Saturday, February 14, 2009
I am still in shock. I called our local Shriner's yesterday morning. I was told that the application forms would be dropped off in the afternoon. When Dave arrived with the forms, I was unprepared for him to take off his shoes and jacket, sit at the table and pull out a pen. He was going to get them filled out now and sent in the following day!
Filling out these forms can be amusing. One of the questions is 'how many treatments has the child had'. I asked what that meant, surgeries, appointments, casts...? He decided to break it down. He asked how many casts. I had to laugh, I lost count years ago.
Dave did say that Spokane is where most kids from here go for Shriner's help. We talked about that and I stressed that this is not a regular clubfoot. That Dr. Dobbs in Missouri has experience with this combination.
As Dave was gathering up the papers, he asked if we had passports and stressed that I would need a letter from my husband to take Matthew out of the country. I must have looked puzzled because he said that he felt Shriner's would sponsor Matthew and that an appointment could be as soon at 20 days after approval. I was in shock and forgot to ask how long approval could take but really, doesn't matter, the ball is rolling...fast.
Seems the final hurdle is going to be convincing the Shriner's that Matthew needs to see Dr. Dobbs and not someone in Spokane. Dave feels this is just a formality. That treatment at the closest hospital is always preferred but he also feels that Missouri will be the one.
Just in case, I sent an email to Dr Dobbs letting him know what was going on and that I really wanted Matthew seen by him.
Now we wait.
Friday, February 13, 2009
This simple request can not be easily granted. Apparently, because it is not an appointment for Matthew, they are unable to bill this appointment. And because the surgeon doesn't need to see Matthew until June, the booking receptionist didn't think she could make an appointment for him and take up valuable appointment time for another child. I think that was her way of saying nicely 'I know if you book for him now you are trying to get in the back door.'
Insert scratching head here.
So, the way around this is for me to make an appointment with my GP to request a referral appointment with my son's surgeon (of SIX years). Then I can get a referral appointment (I have no idea if I have to have a regular wait time or if I can just make the appointment) to see said surgeon so I can talk to him with out Matthew present.
Insert head shaking here.
And no, his surgeon does not take phone calls over this nor does he answer emails like the American doctors.
So, I now have an appointment next week to see my GP to request a referral to see my son's surgeon so I can chat with him without Matthew present.
Honestly, how can you not laugh over this? I sure have.
I called the Shriners after this amusing phone call. The receptionist said that the person I needed to talk to was out for the day but she would call him on his cell and see what can be done. He called me back moments later and is stopping by my house this afternoon to drop off the application forms.
Shriners vs Alberta Health Care? What's your verdict...
Thursday, February 12, 2009
Wednesday, February 11, 2009
Today was different. It still hurt, a lot, but things are looking up. For some reason, he was almost at 90 to start. Last time, it took 20 min of stretching to get him there.
Yay for small steps!
I also chatted with his p/t. Told her I was seeking a second opinion in the US. Told her some of my issues and concerns.
he is relapsing
his surgeon doesn't want to see him until June
his surgeon doesn't think physio is necessary
his surgeon doesn' t seem to have the same concerns about the tall AFO reducing calf muscles
his surgeon seems to be waiting to do more surgery
his surgeon believes in below the knee casting
That last one made an ally out of her. She told me her concerns about below the knee casting based on her p/t knowledge. Made me realize I NEED to get Matthew to some one new.
She asked me who this doctor was and where he was located.
Here is where the world works in strange and mysterious ways. She said "St. Louis? Missouri? I have a friend who is a pediatric physical therapist who works in St. Louis. Would you like me to call her and ask for some information on this doctor?"
My jaw must have hit the floor. Seriously. How small is this world anyway? So of course I said "oh yes please!"
We chatted some more about Shriner's vs Alberta Health Care Out Of Country. She said to keep my options open that maybe there was a good doctor in Spokane that would be easier to get to.
And all the while, Matthew ran in the gym, kicking and chasing a ball. His p/t commented again on how she was amazed at how he can run. Which made me remember... I had meant to bring my video camera and tape his running for another mom of a little boy with a neuromuscular club foot. She has been asking me if, at the age of 6, he can run, play sports, and basically how he functions. I need to video tape him for her. And of course to post here as a proud mommy. I told his p/t that and she said "Oh yes! You HAVE to do that!" Hopefully next week.
When we got home, in the mail was theOut Of Country Health Care forms. Bleck. Lot's of stuff needs to be compiled. Lots of people need to be contacted. I thought it was jumping through hoops. Nope. It is a tight rope walk. And at the bottom it states, submission is not a guarantee of funding. Yay.
Note to self. Check out Shriners.
Then the phone rang. It was Matthew's P/T. She had already called her friend in St. Louis. Talk about fast! She had a bunch of information for me but in a nutshell was this. Her friend did not know him personally, but thought that with his credentials he would be the best person for Matthew to see. That his unique skill set was a beautiful match for Matthew's unique problem.
Now to get us there.
Saturday, February 7, 2009
I was almost in tears Friday morning after talking with Kristina, Dr. Dobbs' nurse. I know that she can't give me much information until Matthew is seen, but it makes it hard to plan. Seems that the first appointment will or will not be an informational exam, will or will not be the start of serial casting, will or will not be a pre-surgery appointment. This first appointment will or will not be the start of a series of appointments that may or may not be every week for as long as it takes. I know that they can not say for sure until they actually have Matthew's foot in hand (literally) but it makes things so hard.
I started to worry about all of this. What will I do if they need to serial cast him for 4-6 weeks? Would I actually fly back weekly at a cost of $1000 just for flights every week? Not to mention at least one night stay as the flights from here to there are crappy and take a whole day. Or would I stay there with Matthew? Leaving Ryan? Ship him off to Vernon for 4-6 weeks where he would most likely be so sad to be away from Mommy, Daddy, Matthew, his house and all his friends? Do I take both boys with me and live there for 4-6 weeks? The thoughts had me close to tears. Things were going fast with very little information to calm my brain.
Then, in the afternoon, I got a call back from Alberta Health Care out of Canada care department. All of a sudden, this fast train I was on derailed right in front of a circus tent. Seems that in order to get out of Canada care, there are many forms and many hoops to jump through just to get the chance for a committee to sit down and look through the information. They will then decide if this treatment outside of Canada is deemed necessary and not found in Canada. Then I will be able to access funds. How much and for what, I have no idea. Hoping the forms will explain that better. Hoping they arrive early next week.
Some of the hoops to jump through...
I need a letter from his current surgeon stating that he needs the care of the doctor in the states. Not sure why but this feels like a big hurdle. I have to go to his surgeon of six years and say "ya know, I think things are going nowhere with you, I want to see this other guy and you need to write a letter saying so" Feels awkward... but is a must. Will have to make an appointment.
I need to send Matthew's health history. The lady on the phone said "only send what is relevent to this health issue" I chuckled. His first appointment was at 4 days old and he is now 6 years old. His file at the children's is now over an inch thick. How do I get a copy of that and send it?
And the worst part, they don't meet again until March 18. So here we sit, waiting...
Thursday, February 5, 2009
I sent an email to Dr. Dobbs this morning. It had Matthew's treatment history to date, some photos as well as my concerns. This is The letter I sent.
Dear Dr. Dobbs,
My name is Jo-Ann and I have a six year old son who was born with a left clubfoot and was diagnosed with drop foot at 15 months of age. He has been treated in
The following is a run down of his treatment to date.
4 days old – started serial casting (below the knee)
3 months – Denis Browne Bar (DBB) but had many problems with it
4 months –preformed tenotomy, full leg serial casting then Denis Browne Bar (DBB) 23 hours a day
9 months (I think)- cut back hours on DBB
15 months – diagnosed with drop foot
He had a nerve conduction test as well as an
18 months – first non-articulating AFO
2.5 years – first in a series of articulating AFO's
4.5 years – botoxing with serial casting (below knee), back into an articulating AFO
5 years – post tibial tendon transfer with medial release, calcanial osteotomy and more botoxing. Casted for 6 weeks then into a new articulating AFO
6 years – new non-articulating AFO
Now at the age of 6, his heel cord is very tight again. He is no longer in neutral. He has some active dorsiflexion (but can not achieve neutral) and can sustain a hold, but the front of his foot is curving inward again as well as he is walking on the outside of his foot when not in his AFO. He sees a physical therapist every two weeks for stretching at my insistence and am currently trying to get more funding for more regular visits.
His current surgeon feels that within 6-12 months he will need to perform another tenotomy and doesn’t feel physical therapy is needed. I am concerned with the regression. I am concerned that it will only continue and am worried about multiple surgeries.
I have attached some photos of Matthew’s foot taken at one year post-op (Jan 22/09) as well as his latest AFO that was designed to try to reduce the ankle from pushing outwards.
I hope you will be able to give us some insight as to his care.
And this is what I got back in return
Thanks for contacting me and sharing your experience. I can understand how frustrated you must be. I do see a large number of children with clubfoot and associated muscle abnormalities and/or nerve problems.
There is no question that this type of clubfoot is difficult to manage. The key is finding out which muscles are working well and which aren’t which can help dictate proper decisions on future procedures.
I applaud you for insisting on physical therapy since this is crucial for long-term success in cases like you son’s.
It is hard to make specific recommendations without seeing your child. My general approach would be to start with serial casting to correct as much of the deformity as possible before deciding on surgery again.
I would also recommend different bracing. The brace he has is quite large. You can control his ankle with a much smaller brace which would have the advantage of allowing him to develop more muscle strength. Use of brace that large will only further weaken his leg which makes things worse in the long run.
I hope this helps. Let me know if I can be of further assistance.
Matthew Dobbs, MD
I then asked if he could see Matthew and he said he would ask his nurse to set things up for us.
So, I am thrilled that we will be heading out at some point to see him. Unlike Matthew's current doctor, he has experience with this unique combination.
I am also worried. What will this entail? How hard will this be on Matthew? How hard will this be on the pocketbook? Who will help with funding? Should I sign Matthew up for T-Ball?
The questions are endless, but I suppose they always are with children. The only difference are the questions.
I'm so excited!
Tuesday, February 3, 2009
I am aware that I am not a writer. I am a scientist by heart. My writing is more like lab results. Precise and to the point, no elaboration at all. But for some reason this tugged at my heart. Not sure why, maybe because we are coming up on March. March was the start of our infertility journey, and somehow it all came full circle when Ryan was born in March, 5 years later.
Infertility never truly leaves you. Pregnant and even with toddler in tow at the bookstore, I would pick up a new infertility book and scan it. Something that profound changes you forever but still for some reason it is not mainstream conversation. It is still a conversation for back rooms and hushed voices. That needs to change.
So, if I do end up writing something, I may post here first, get some feedback first before sending it on.
Of course that all depends on if I can find some time between now and the 18th when the contest closes.
Monday, February 2, 2009
It was not. It was a bill. Bleh. Four sessions - $200. At this rate, we will eat up Craig's benefits in 2 1/2 months. I sure hope that funding comes in soon.
One another note, I have not written the email to Dr. Dobbs yet. Matthew has been really sick the past few days. I took him in today and his doctor wants him to have chest Xrays tomorrow to see if he has pneumonia, broncitis or if he just has the flu and his asthma is really bad. So I have spent the days and nights cuddling a sick boy. No time to compose a semi intelligent email for a doctor.
Hopefully this house will be on the mend in a day or two and I will find some time to get the email ready.
Sunday, February 1, 2009
Last night, just 24 hours after joining a clubfoot group and introducing myself, I was contacted by someone who also has a son who has clubfoot with nerve damage.
This is the first time I have ever talked with another parent who has the exact same problem as Matthew. I felt like I was reading our own story when she talked about her son having a Nerve Conduction Test to confirm the nerve damage and an MRI of the spine to rule out tethered cord.
She told me that she knows of 8 other families in the US that have this unique problem and is inviting me to chat with some of them. Honestly. Speechless.
And the best news yet. She gave me the contact information for a doctor in the US who has dealt with this unique combination.
I will be composing an email and sending it off in the next few days.
I have not been so excited to contact a doctor in a long time!