Stay tuned

Tomorrow is the big day!  We have been thinking about and talking about HBOT now for several months. Tomorrow we start treatments and I have very mixed feelings. I'm scared, nervous, excited, hopeful and leery. 

There is a fair amount of risk when dealing with Oxygen.  I will be the one going in the chamber with Walker, although Ramiah is coming down tomorrow for the initial dive. I'm nervous that he won't like it, or that i will be uncomfortable with the pressure, I'm excited about the possibility and hopeful that we will be able to see some results but leery of getting my hopes up to high. Also, what if it does help him but not enough to stop after our 20 sessions? It is very expensive and they only reason we are able to do it now is because of my generous family. 

Its going to be a hectic month but I plan to video and journal the entire thing.. so stayed tuned.. and keep us in your thoughts!

Star of the Week

This week was a big week for Dylan.  He was "Star of the Week" in his class.  This privilege means that he gets to be special all week!  He was to fill out a poster all about himself and could bring in a snack to share.  Apparently, its all about the snack!  After deliberating for three weeks, I finally convinced him that a cookie version of his favorite food would be fun, so we made pizza cookies, complete with a pizza box.  Dylan had fun tricking his classmates for three days that he was bringing in pizza, only to surprise them with one made out of candy!!

When I delivered the pizza, Dylan's classmates gathered around and he was able to share his poster "all about me".  His poster consisted of his name, his height and weight, his family, what he likes and dislikes and what he wants to be when he grows up.  The one part that caught my attention was "My Three Wishes", his number one wish was "For Walker not to be delayed anymore", This made my breath stop!  Here he was, openly sharing his private world with his entire classmates! 

I often think about how I feel about Walker's disabilities, or how it affects him but often I am caught up in our day to day, that I forget it affects his brothers too!  I didn't know whether to be sad that Dylan has these concerns or  happy that he is sensitive to his brothers needs.  I guess I should be both!  It was really beautiful how the other kids in the class asked him what that meant and Dylan explained more about Walker and how it affects all of our lives!  He was so comfortable discussing it and I was very proud!

Can you tell me how to get....

At 2 years, 7 months and 15 days old, Walker may possibly be getting on a school bus and leaving the safety net of our house and beginning his educational career.  It seems scary, impossible and just plain crazy!  He is still so little!  There are so many things that he can't do for himself, and so many cues that only the mama knows!!

Yesterday, Ramiah and I went and toured one of the preschools that Walker may be able to attend. I was so glad that Ramiah came, I wanted him to really get a sense of what school would be like for Walker. I had worked in this school years ago, so I understand the benefits But I still have many trepidations because he's my child.  At the same time, though, I am very excited for him.  I recognize that Walker needs more socialization, and he needs more stimulation that I can give him here at home every day.  Just seeing Walker's face light up when he saw the kids walk by in the hall, made me smile!  Even when we left, Walker was kicking his feet and waving his arms, all excited.

I know that as a parent it is my job to make him as independent as possible, which means letting go.  I will have to trust his teachers and aids to establish a relationship with him and learn his cues... and daddy will have to relax a little and let Walker grow into the toddler that he is!

HBOT - lets go!

Today we went to meet with another Doctor who administers the HBOT therapy that we have been researching for Walker.  It was so nice to meet a Doctor who has first hand experience with how this type of therapy can help.  She has a 13 year old daughter with Cerebral Palsy and has seen how it can make a positive improvement to the quality of life for some individuals.

As I have posted before, we are not seeking a miracle. we are not expecting Walker to tango out of the tank, but we are hopeful that we can bring the true Walker to the surface a little faster.  Just to hear him mutter mama, or give a kiss would be the greatest gift I could ask for! I am trying not to get my hopes up to high, this center is only an hour drive away so we will be able to travel there each day.  Our plan is to take Walker every day, Monday through Friday for the first 20 sessions and then go from there.  Everything I read, suggests at least 40 sessions, but Ramiah and I would like to see how it goes, sort of play it by ear.  20 sessions would be four weeks as well as a good chunk of change.  None of these sessions will be covered by insurance since it is still considered "experimental". 

I will keep a diary of how it goes and post updates as they come. Please send all your positive vibes our way!!

Subtle Energies

Today was our second session with Connie at Subtle Energies. We were referred to Connie by a good friend who has studied with her in the past.  Connie suggested CranioSacral therapy.  It is another alternative practice to help Walker and possible get things flowing in his brain that might help his developement. Although, I am not sure what to expect from our sessions with Connie, I do know that Walker loves it!  He is calm and peaceful during these sessions and Connie is v4ry knowledgeable about different dissabilities.  We will keep you posted!

Observation

I wonder what he sees, what he hears and what he smells.  In some moments of Walker's day he seems lost in his own world, somewhere else perhaps...but tonight as I sit here in my living room with everyone in the house asleep, I wonder if in those moments he is actually more here than the rest of us.  Is he tuned to the clock ticking? the fire crackling? the low hum of the tv not completley turned off?

Some days I want to blindfold myself and try and figure out what the world hears like or feels like... like Walker does everyday. It takes a tremendous amount of concentration.... I often fill my world with conversation and sound not sure how to be quiet... it takes practice... I guess you could say I am out of it....

today my lesson from Walker is observation...

Food obsession

As an infant Walker spit up a lot, I don't just mean a little bit like mother's exagerate, I mean a  lot!  He was breast fed and my third, so I knew it wasn't normal, but just kept feeding him 24 hours a day... seriously... then when we stared him on solid foods that didn't seem to help either. Finally the doctors listened to me and he was diagnosed with reflux.  Around that same time he was labled "failure to thrieve".  Nothing brings on the mommy guilt more than a child who isn't eating or gaining weight. Since then I have been obsessed with what Walker eats, how much he drinks and what calaories he takes in. 

These last few days however, he hasn't been eating very much.  I don't know if he is sick of the same old, same old, but it seems all he wants to eat are cheerios!! The poor guy must be sick of me shoving spoonfuls of more nutritional things in his face every five minutes. but I am so worried that he is hungry and can't tell me.

I know I need to relax, if it was another child and mother, i would say... "he will eat when he is hungry" so why can't I just let him be? Is it a way for him to exert some independence? He is after all, two!

I think as mothers we just want to make sure our children are well fed, that it is a symbol of our love to feed, so I am going to leave him be and head off to put dinner in the oven instead!