Rainy night

Tomorrow we start the second half of Walker's HBOT treatments.  He has had 9 and from earlier posts I do think we are seeing a difference.  I don't really know what to expect and how much of a difference is a difference. As hectic as these last two weeks are, there is a part of me that does not want to stop.  Because if we stop then we admit to defeat.  Man, that brings so many emotions to the surface!  Just writing "defeat" stirs up so much.  it brings up guilt that there is still a part of me that hasn't accepted Walker for how he is, right now. does that make me a bad mom? Some days I look in his eyes and know there is more of a personality just wanting to come out, I wonder how to get it out to the world, to show everyone who I know Walker is!  Then I question do I really know who Walker is? My self doubt takes over.

There are so many things that I want for him, and its hard to separate out what those things are that are for him and those that are really for me.  My family and I talk about "quality of life" for Walker, we talk in terms of communication, and health.  But what does that really mean? I read so many other blogs of moms with children of special needs, and I envy their positiveness, their confidence and advocacy for their child.  I am sure they must have dark hours not unlike mine, but maybe they just don't share those with the world.

I don't know how else to be. 

Two weeks down

Week 2 of HBOT is now behind us.  Yesterday and today Walker actually seemed to enjoy it!  He smiled and laughed when I put the air over his face.  Today we just snuggled in the tank in a spooning position.  As much time as it seems that Walker gets in my life, we don't ever actually get to spend uninterupted time! So it is nice just to snuggle and love him! 

Next week we get to switch to a newer tank, they are finishing up their relocation, I just hope that it doesn't throw Walker for a loop now that we've got this one down! The new tank will be smaller, but it will be filled with the oxygen, so I will be breathing it in as well. If Walker seems to do fine by himself, I might send him in alone.  Some days he just doesn't want to be messed with; so I will have to gauge it day by day. Lord knows that I could use some regeneration of brain cells!!

Preschool #2

On our journey with Walker, we are preparing him for preschool.. yes, preschool!  It seems so amazing that we are actually at this junction where getting on a bus and leaving me for several hours of the day is within his near future! Yesterday we went to see another possible preschool center in our area.  We have had some experience there before with water therapy (Walker HATED it!) but we never got to  go into the preschool area.  In the first school we visited I remarked that there weren't many kids that "looked" like Walker, meaning, all were walking or sitting nicely at the tables, but in this school there were more kids like him.  We were able to see all the equipment and meet the teacher of the room Walker would most likely be placed in.  Everyone was very nice and Walker was again excited at here the other children playing.

So here is another hard choice.  Do we put Walker in an environment where there are children just like him? or do we put him in an environment where he is extra "special".  Will this help motivate him or isolate him? Is a larger facility better equipped or a smaller one more personal?  Should I make judgments of the program based on the person who gave us the tour?


Decisions...decisions...

HBOT Week #2

We are in week two of Walker's HBOT treatments.  Today was #7.  The suggested theraputic amount of sessions is 40, we were going to try 20 and see what happens.

I've learned so much already!!

1. Do not take Walker around nap time!
2. He hates the hood, overheats and gets more upset
3. Pee is able to sneak out of even a clean diaper
4. not much of what I own is 100% cotton
5. My internal clock needs adjustment, 60 mins can fly by or take FOREVER when there is a cranky baby in your arms
6. I don't look half bad without hairspray and make up

I know that it has only been a few sessions but we are seeing some slight differences.  Neither Ramiah nor I wanted to say it but we do see better coordination with his eye movements, and yesterday he reached out for a toy with his therapist! 

So stay tuned.... for an HBOT center coming soon near you!!!  (the only thing we can think of to afford this in the long run!!) 

Dinner, conversation and thoughts

Last night Ramiah and I were able to get out and catch a bite to eat.  We don't usually get time to ourselves and we just wanted to catch up.  We chose to go to our local dinner, who by the way has great french fries, with mozzarella and gravy!.  While eating a table was sat next to us who had an older boy.  I could tell that he had special needs, but could not put my finger on it.  I watched him look at is reflection in the window and make faces at himself while the rest of the table held their own conversation.  I wondered how old he was, where he went to school, how old he was when he started to walk, and had so many other questions.  its not polite to go up to strangers and ask questions. Without having Walker with me, I was not easily identified as being a "special kids mom".  I wonder if other parents want to do that as well? Do people look at Walker and have lots of questions but are afraid to ask? How can I promote them to come up and ask? I don't mind... really.  I would rather answer questions and have them interact with Walker then shy away, afraid to offend me. How can I do this? A fellow blogger wrote about giving her daughter a name tag and i was thinking of doing the same: "Hi My name is Walker, I don't speak but I like to meet new people and hear funny noses." 

HBOT Day 3

Today's lesson is: do not take Walker to HBOT therapy at nap time... big mistake!  Poor guy was exhausted and couldn't sleep. He cried the entire time and was so hot and sweaty! It was the longest 70mins EVER!!!!

Needless to say, we won't do that again. Happy to report that after he slept in the car, all the way home (folded over and while he sister screamed next to him) he was all smiles!!!  Man, this kid can bounce back!  I love that about him!

HBOT Day 1

Today was Walker's first session of HBOT (hyperbaric oxygen therapy).  Although the doctor had gone over everything when we were there before, I still was a little unsure of what to expect. I thought that we were both going to have to wear scrubs and take off all metal.Surprising we could wear our own clothes, just couldn't take in anything flammable.  The chamber that we are using allows me to go in with Walker.  The chamber is pressurized but the oxygen is only administered in the hood over Walker's head. 

Daddy came with us today, for the first treatment! 

The chamber is a little intimidating, but there are comfy pillows and a blanket.  It can be be opened from the inside in case of emergency.  There are three windows so we can always see out and David (our tech) can see in as well. 

Walker got his very own hood, this is the part that goes around his neck.  Once we are inside the chamber and the pressure is lowered then we put a plastic hood on top of this neck piece and tubes are attached to blow in the oxygen and take out the air.

He did great!  He was a little uncomfortable when the pressure was dropping because I couldn't get him to swallow, but once his ears popped he was fine!  It took us a little while to figure out what the best position was for  him to be in but then we just sang songs and played.  It does get pretty warm in there so tomorrow we will wear less clothes!

There aren't any side effects and it will be some time before we see any results etc.  But the fear of the unknown is behind us!!

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...