My Best Gift

From my loving Husband

Unpredictable

Life is very unpredictable.  One minute you are driving in your car. The next, you are inside your smashed car talking to rescue workers, praying that the baby inside you is still alive.  Dramatic, I know some of you might say, but it is true. It was what I lived.  It made me think about life and how I live it.

I think about that fateful morning pretty much every day.  I think about the "what ifs".  If I didn't crash, would Roa not have cerebral palsy?  If  I would have stayed home that morning instead of driving to work, nauseated, constipated, and light-headed, would my life be different now?  If I had not passed out while driving and made it to the side of the road safely, would I be a different kind of mother to a different kind of little boy?

Bryan tells me not to think about it. I am not to blame.  The doctors tell me there is no way of know if the car accident was the cause of Roa's issues. But,.. I still think about it- every day.

I don't want to live a life of "what ifs".  I want to surround myself with positive people and live life to its fullest. I want for Roa ALL that is possible including freedom of movement WITHOUT support by another, the ability to SPEAK his mind, the love of a family that is UNCONDITIONAL and WITHOUT JUDGEMENT.

As I sit here, my mother is in the hospital at Mayo Clinic/St. Mary's Hospital.  She has a drain in her head relieving her of pressure from built-up fluid.  This very second, she is returning to her room after her second angiogram which  is determining why there is bleeding on her brain. 
Before her severe headache two weekends ago, she officially retired from her job and was ready to enjoy life. Now, she questions her future.
I had a good talk with my mom yesterday about life and how we have choices about how we live it.  We choose what is important, what our focus is, how we treat others. 
But life is unpredictable and sometimes you have to just deal with the curve balls thrown at you.

Holiday Wishes

While Roa is nestled all snug in his bed...
I wanted to send a message to all my blogger friends,
Merry Christmas and Happiest of Holidays to you all!
We are pretty much snowed in here in Minnesota. Boy, did we get a white Christmas!
Roa, Max, Molly, and I played in the fluffy white stuff this morning and now, Roa is tuckered out!  

I'm drinking my coffee and waiting for Bryan to get home from his half day of work.  I cannot wait to see Roa's face when he opens his gifts tomorrow!  The best one from good ole Santa, you ask?  A little vaccuum of his own!  Here he is helping me with holiday cleaning.  Momma's job is gonna get a little easier! 

No more AFOs!

We are happy to report that, per Doctor Gormley, Roa no longer had AFOs for feet!  Today, Ellen and I went to Winkley Orthotics in Woodbury to have Jason, the Orthotist, trim them down to UCBs! UCBs are basically just a shoe insert for his foot to keep it straight and keep his toes from curling under due to muscle tone.   YIPPEE! 

Roa is beginning to tolerate a little more time today in the gait trainer.  He has absolute NO interest in being in the wheelchair.  We are thinking we will give it a try for the trial period, but Roa is going to be a walker-type or pushed in a stroller.  Being that powerchairs are approximately $6,000, we will totally work for the walker!

Toddler Alert

Today was a day I will call, "Special Delivery Day".

At 10:15am the Reliable Medical Sales Rep. dropped off the powerchair.  At 10:17, the mailman brought a early Christmas present from Grandma Patty for Roa.  At 12:00pm, Mary, PT, brought a gait trainer for Roa to try.  And at 1:15, FedEx brought some Santa gifts I ordered!  The doorbell still rings in my head!  Ding Dong..

Roa responded to the wheelchair with curiosity.  I put him in it and he got a bit angry with all the adjustments of straps and belts I had to do.  Once I should him that it moved, he cheered up.  The wheelchair is powered by a joystick and Roa was a bit frustrated with trying to move it forward.  When operating it independently, he would kinda just go in a circle...backwards.  This got old and he fussed to get down.

We then open Grandma Patty's present of snowpants and snowboots.  The boots won the popularity contest over the wheelchair in seconds.  He wanted them on... NOW!  We then spent the rest of the time until Mary arrived walking around the house with Roa laughing with joy at his new black boots! 
What can I say? The kid's a walker!

The gait trainer Mary brought is not exactly the right size for Roa, but we will try it until the one ordered from Reliable Medical arrives.  Roa didn't get moving in it until I placed a ball in front of him. That set him off, ...kicking as he went!  He move directly into the Christmas tree and squealed with delight!  As I moved furniture around and out of the way, I thought to myself,  Finally, my toddler is getting into things and causing trouble!  I LOVE IT!

Positive Appointment!

We had such a good visit at Gillette with Doctor Gormley yesterday!  First of all, we didn't have to wait for a super long time as we usually do!  This is great as Roa is not very patient, especially in the little exam. room!  Also, they remembered us and didn't ask all the same, routine questions about Roa as they have repeated in the past!  Nice!
Dr. Gormley is very personable and easy to talk to.  He doesn't act rushed and actually listens to all our questions with interest.  That is such a blessing as other specialists and the wide variety of pediatricians we have tried look at me coming in with my folder, calendar, and lists of questions/concerns and have that "Oh, no...here we go...too informed and involved mom alert!" look on their face.

Dr. Gormley said that the botox is working beautifully for Roa.  He was pleased with his muscle tone in his legs and liked his walking without scissoring skill.  We are scheduled in March for his next round of botox that will be similar to this last, but will include his forearms.  The doc said that the gait trainer is a great idea now and that Roa looks great walking with support.  The powerchair is something to give a try, but he thinks that Roa is a bright kid who will master it and then may give us some grief if we make him try to move without it!  But, we said we would do the trial period, get the ball rolling for an order and possibly cancel it if Roa is moving easily with the gait trainer.

The gait trainer we are looking at is called the Rifton Pacer.I attached the picture to give you an idea of how he will move. It won't be available for trial for a few weeks as it needs to be special ordered for Rojo.
I also found a general pic of a power chair.   I called Reliable Medical yesterday and found that the chair is being delivered  TOMORROW!
 Merry Christmas, move the furniture, barricade the tree,.. Rojo will be on the go this holiday!

Over the River and through the woods...off to Gillette!

Roa has his Botox follow-up appointment today at Gillette with Dr. Gormley.  At this appointment, we will discuss the affects of the Botox on Roa's motor skills and discuss any changes we have seen, any ideas for the next injections, and set up the next round of botox.  On average, children with CP will recieve injections every 3-6 months. We will see what the doctor suggests for Roa.
We have been pleased with the result of the botox in our guy.  It has helped him get better sleep by relaxing his muscles, it has helped him sit with more ease and grasp objects without them flying out of his hands.  Roa seems to be tighter on the right side than his left but keeps his left thumb in more than his right.  We will mention this to the doc to see if it alters the dosing pattern.  We will also talk to the doctor about the power chair, gait trainer, trunk support vest, and possible new AFOs ideas brought up by the therapists.

Roa has begun his second week of HBOT at home and is doing fairly well.  I know,... I continuely bring up teething, but WOW!  I can't believe the molars and canines that are moving into my boy's mouth!  It does seem to impact his adjustment to the pressurization of the chamber.  We have kept up with Benedryl and I have slowed the pressurization speed on the chamber as Bryan and Roa "go up/down". 
Positive effects after a week of HBOT-  Roa is once again babbling, "Go", and "baaa" and just making more sounds.  He is also wiggly and giggly when placed on the floor after treatment.
Negative effects-  Roa is once again waking 6-8 times in the night!!  URGGHHH!  However, we don't let him nurse every time (we have started a nursing schedule and stick to it!) and Bryan usually goes in and just repositions him.  Thankfully though, Roa is waking and babbling and laughing!  Not crying and screaming!   Guess we gotta take the good with the bad on this one!

Support

I finally got the time in a day to post a few videos of Rojo in action.  I hope you enjoy them as much as Bryan and I have!  We are very proud of our guy and his accomplishments, no matter how small.  Thanks to those of you who have emailed, called, or posted messages about your delight in the videos!  We appreciate it more than you know.

Bryan and I chat in length, usual on our walk, about support and how it comes to you, sometimes from unexpected places.   It is amazing how having a child who is developing on a different timeline  makes some people shy away from communicating with  you about your life.  Some people seem afraid to ask questions or seem nervous to interact with Roa. Some want to know all the details.  When we are jumping for joy over the tiny new change in his life, some people think, "What's the big deal?"  Some people know what a VERY BIG deal every little change Roa makes is.  Some don't get it. Some people whom you never dreamed would get it, DO, and reach out to you more than you could have dreamed! Some people you thought would be there for you, are not.  Some people call or email frequently with words of encouragement or offers to help in anyway they can.  Some people remember to ask about Bryan and I and how we are handling the challenge of  raising a child like Roa...that too is nice since "King Roa" occupies so much of our thoughts and actions-our lives seem to completely revolve around his needs.  Some only ask about Roa.  Some people truly don't want to get involved and, I think, that is their choice.

This holiday season, I think it is important to think about SUPPORT and what it means to you.  Are you supporting a worthy cause, helping someone who is down or in need this season?  Have you reached out to someone who might appreicate kind words or a simple chat? Have you made an attempt to make your friends and family know that they are important to you?

THAT is the spirit of Christmas.  That is giving of yourself to support others.

A big thanks to those of you who continue to support Roa in all his success, no matter how small.  Thank you to those who have been a shoulder to lean on when things get overwhelming.  We don't know what Roa's future looks like exactly, but we know we definitely have support in making it the best it can be.

Roa's Mealtime pout/ Dog therapy (Sept. 2009)

Roa in his stander (October 2009)

Roa in his walker (December 2009)

Trapped!

I woke up this morning to frost covering the windows as the street light shown through and I thought, it is the season of feeling trapped.  I said I gotta blog about this!
Lisa beat me to it.  I just read the positive post of Elijahland blog and realize I need to break out the love-o'-winter-feelings myself.  However, it is cold and I feel just that.... trapped.

Roa is still young enough at 17 months to not enjoy the cold wind in his face.  We tried the swing in the backyard last week as the flurries flew and the breeze nipped and he looked at me with the "Mom, are you crazy?!" look and indoors we went.

Today, as he walked me around the house, he moved over to the door and then looked up at me as if to say, "How long will this take?"
I totally feel his pain. There will be warmer days where we can try sledding, build a snowman, and take him on our nightly walk.  But,  right now, Roa, it's just you and me, kid.  Trapped.

Back in the saddle!

So Roa and Daddy had their very first home-based hyperbaric oxygen therapy session last night!  No one was too excited about it, I must say. Mom was a nervous wreck "in control" of the chamber, Dad was battling his sinus headache, and Roa continues to have teething woes, so the pressurization and depressurization was tough on his ears.  But, one hour of therapy down!   YEAH! 

After he got out, Roa was quite happy to be in Mom's arms.  However, it didn't take long for him to want to get down and move around.  The rest of the evening, Roa was WILD and giggly.  Babbling and laughing at the dogs and wiggling on his blanket ride.  The oxygen therapy impact already?  Could be!! 

I am, there for I walk.

Last night I had a dream that Roa was walking beside me.  It was such a sweet dream.  So very real.  I was walking our dogs and talking away to Roa as he laughed and listened... and WALKED next to me.

This morning as I lay awake in bed awaiting Roa's wake up, I thought about my wonderful dream.

I have been a faithful walker for over 15 years.  I gave jogging a try for a while, but due to back issues, went back to the power walk.  Walking daily helps me clear my head, motivate my actions in life, and keep my spirits up.  Before I met Bryan, I walked my dog, Tucker and found it the best time to think, pray, and just be.  Since Bryan has been in my life, he has joined my walk and we have had our most indepth talks on the move.  We bonded on those walks.  Bryan says walking is what made our relationship so strong. 
After having Roa, he joined the walk in his stroller or carrier.  We so look forward to our nightly walk that when winter hit last season, we sometimes battled over who would walk the dogs and who would stay home with baby Rojo.
This season, we are bundling Roa up and tucking him and his carrier into Daddy's jacket and off the whole family goes!  Crazy as it sounds, not only do our dogs walk with us, but our cat, Beast has tagged along on many occasions.
With walking being such a staple of the Thayer's existence, I cannot imagine Roa not walking.  Will he move along in his power wheelchair holding a dog leash?  Bryan will continue to carry him until he is too heavy to manage, but then what?  I will push him in his stroller for years to come, I assume.

 BUT, the Thayer's will keep walking!  And we will work with all our powers to help Roa walk.   And we will continue to pray each night as we fall into blissful dreaming of Roa walking on his own.....

Wheels for Roa

Our hyperbaric chamber took a little longer to get to us than we anticipated, but it will be here tomorrow afternoon!  We are very excited to set it up this coming weekend and begin oxygen therapy again.

Another new development in Roa's life is that his therapist, Andrea at Courage recommended we give a power wheelchair a try.  It was very emotional to consider this step in our lives.  Andrea stressed that this does not mean that she thinks Roa will not move on his own someday.  She STRONGLY feels that he will, but she said a power chair might give him a sense of independence, work on hand coordination, and just be a source of mobility for Roa.  We said we would give it a try for a couple weeks in our home. I got a call today from Reliable Medical and he is on a waiting list for a trial, but is should be 2-4 weeks!  Wow, our little guy in a wheelchair?  Life takes crazy turns.  Makes you REALLY think about how lucky we are to walk, crawl, run... move on our own.