Wednesday, December 29, 2010

Wordless Wednesday

Listening to Brown Bear, Brown Bear

Monday, December 27, 2010

Mucus and Motrin

Mr. Mr. is sick.... again.  It seems that these last few months have been filled with mucus and Motrin.  I know I've blogged about it before, but not being able to communicate what is wrong has got to be so frustrating for him!  I know its frustrating for me!  Hence, the Motrin.  When all else fails (read: eating, sleeping, diaper, cuddling, vibrating pillow, funny noises, favorite video, songs etc) I give  him Motrin.  I figure if nothing else, whatever is hurting may feel a little better with that.  I just hate when he is sick!  I don't know one mother who enjoys it, and of course with the extra attention he needs, the other siblings get clingy and jealous.

Then I wonder if I should take him to the doctors or not.  With children that are not mobile, they worry about them getting pneumonia and they usually put him on antibiotics, which of course upsets him tummy and then he is not happy either.  So I am waiting it out.  But in the mean time, the house hold is pretty miserable, which makes for a miserable momma too!

Sunday, November 28, 2010

Walker updates

It seems time is flying by!  Mr. Mr. turned 3 years old on Friday, and boy have we come a long way!  Its amazing to think that on the day he was born, we had no clue what our future would entail.  We had no idea all the trials we would be put to, and what he would teach us along the way!  Sure there are days when I am exhausted and short tempered, but one look into those big blue eyes and my heart melts!

He is truly loving school! We are seeing some amazing things happening with him too!  He is sitting up so much better, with much more trunk control.  We don't need to use his chest strap in his feeding chair.  His teacher reports that he keeps eye contact for the entire spelling of his name during circle time and he loves the alphabet song and book they made him.  The most exciting progress is that he is pushing up on his arms!  He hasn't figured out how to do both arms at the same time, but he is really interested in getting his top half up and looking around!  He will also get up on his knees but hasn't mastered both ends at the same time!  This is great progress and we are very excited to encourage him!  I can't wait until he is crawling around and getting into everything!! 

Happy third birthday my sweet boy!!

Wednesday, October 13, 2010

Walker's 1st Field Trip!

Pumpkins, pumpkins and more pumpkins!  It's my favorite time of the year!  All the beautiful colors, the crisp air and the last chances to get outside before the dark cold winter!

It's a right of passage in our area to visit Maples farm, go for a hay ride, feed the furry cows and then pick out the perfect pumpkin.  I was happy to accompany Walker and his class on their very 1st field trip yesterday!
The children rode the bus and I followed in my van in order to take Walker's chair with us.  I knew that I would have to carry him on the wagon ride, but wanted to be able to wheel him around the rest of the time.  He is getting pretty heavy and big to carry these days!

First we visited a small animal area but Walker's chair wouldn't fit through the walkway with all the other kids, so we chilled out outside by the pony.It was probably for the better since the smells and sounds might have been too much for Walker.  Next the class went through the corn maze but Walker was ready for a snack. We visited with the OT and PT therapists that were there and it gave me some time to catch up with them.  After, we headed over to the bounce house and slide.  I wanted him to participate so I took off my shoes and climbed in with him.  His classmates were happily bouncing as I held him tight in my lap.  He really seemed to enjoy it!

Finally it was time for us to go on the hay ride!!  I was more excited than he was, because by this time he was spent!


His teacher and aid, picked out the best pumpkin while Walker and I cuddled on the wagon.  It was really nice to just hang out with him, since we often don't get uninterrupted time at home! He slept the remainder of the trip so we had to wait until he got home from school to take his picture with his pumpkin!
But as you can see, it was well worth the wait!!




Friday, September 17, 2010

A soft landing

Recently, I posted a blog about my concerns for Walker's schooling.  I was worried that he wasn't really being involved as much as possible because he can be upset very easily and I was only witnessing him in one location in the classroom.  That blog is here. So today I got to experience what a morning is like for him in his classroom.

I am very pleased to report that he is being fully engaged in all classroom activities.  Actually, I really didn't think he wasn't but I wanted to witness first hand how they were handling certain aspects of his IEP goals. It was awesome to watch him interact with his aides and get involved in matching, sorting and coloring.  His aid is AMAZING!  If I could clone her for every special needs child I would!  I know that she is not just assigned to Mr. Mr. because they like to switch around within the classroom, but as I mentioned I would request her for him everyday if I could! She worked him hard and knew when to relax.  He was able to place two plastic bears in a bowl out of five tries!  It was so great to see him excited to be part of the classroom.  Circle time, they put him in his stander and he was really liking all the singing.  I had only a few suggestions for the aid, and she was very receptive.  I know that not everyday will be peaches and cream for him there, because truth is its a struggle here with him to. But I am so happy for the decisions I made to put him in preschool and I am confident that I made the right match.  Even though he isn't completely at the level that the rest of his peers are, its so good for him to be exposed and gives him something to reach for! 

Wednesday, September 15, 2010

Snow ball in an instant

Sometimes having a non verbal child can be a blessing.  They don't tell you no or I hate you, they don't whine or say "i'm gonna tell grandma on you", you can have adult conversations and not worry about your language being repeated.  But mainly, its not so good.  There are days when I would give anything to hear Walker call me mama or tell me he loves me.  Mostly, though its difficult when he is distressed and I can't figure out what is wrong or how to sooth him.

His transition to pre-school has been pretty good.  The summer session went by without any major incidents, but the last few days have been a little rough.

On Friday, Ramiah got a call from the school nurse stating that Walker was very fussy and upset and they felt that he would be more comfortable at home.  So he went in and picked him up.  By the time he got to the school Mr. Mr. was asleep, and by the time he got him home he was in a great mood and ate like a champ.  Over the weekend, we watched him closely.  Sure he had a runny nose, and he is cutting teeth, but was there something more brewing?  When Monday came around and nothing seemed wrong, we sent him off to school. He had a great day and came home singing.  Yesterday though, we hit a bump in the road again.  The nurse called Ramiah early (my cell phone is still not working) and he gave permission to give him some tyelonol.  If his teeth were the culprit that would certainly do the trick.  However, when I called by 11:30, he was still very upset.  So upset, that I could hear him wailing in the back ground.

I was very torn.  I could clearly hear my child in distress, I could clearly hear the tone in the nurses voice that she felt I should be there to pick him up, but I also wondered if it was just a normal "off" day for Walker.  If so, then it would be important for the aides to learn his cues and how to deal with him.  He couldn't possible stay home every day he had a runny nose or sore teeth.  So I compromised.  I told the nurse to give him another dose and that I would come into the class and work with the staff on some tricks that I know. 

I think she thought I was alluding that they didn't know what they were doing, since I was given ample assurances that they were all mothers and have dealt with children for a long time.  My point wasn't that they didn't have a clue, its just that they don't really know Walker yet.  So i headed into school, very curious to see what I would find. 

What I found was a passed out and exhausted Walker.  Not surprisijngly since he had been screaming and crying for almost three hours.

The aides in the classroom were genuinely  concerned.  I could see their anguish written on their faces.  Maybe I am just used to these types of days with Walker.  What I do know is that he can snow ball very quickly from a little upset into full blown tantrum and nothing seems to calm him.  Its these times that I wish he could just tell me whats wrong!  I can try different things and take my best guess but sometimes that doesn't even work, so then I try something else, and then I am not sure if he is over stimulated and I am just pissing him off more!  It can be exhausting for both of us!

My hope is that the aides will become more equipped to head him off before he gets into the snow ball again, and most importantly I really hope that one day he will be able to communicate somehow what he needs! 

Monday, September 13, 2010

Watching those pennies

$17.47 is what I spent last night at the super market for baby food for Walker. Sadly, the amount of food I purchased would only last him 4 days tops!  That doesn't include the 5 or 6 jars we toss each week because he eats a portion of them then clams right up! I've been meaning to really just STOP buying it, but the laziness in me, just keeps putting it in my cart!  It is also the easiest thing to get the hubby to use, since it doesn't require much forethought, except going to the kitchen cabinet and opening the door! 

Pennies are tight these days, so I have to come up with some other alternative.  Tack on his dietary issues and its not so easy.  Hopefully, though I have found some options.  Last night I also purchased a beef roast and some potatoes.  I put the roast and the potatoes in the crock pot and this morning they were ready to be pureed.  After completing this task I realized that I will need more Tupperware and a bigger freezer, I was able to make up 12 portions!  So that is compared to the $1.00 jar of meat and the $1.50 of vegetables that would be needed to fill him up.  The roast cost $5 and the potatoes were free (compliments of my good friend John's garden!)  so i believe this is a SCORE!  Hopefully I can do this three times a week, alternating between meals to try and spice it up for the little man! It will only be a test of my planning skills!  

Sunday, September 12, 2010

Handicap Permit Only

Last week I went and got our handicap parking permit.  It doesn't sound like a big deal but I had struggled with the idea of putting one up in my car and actually using a handicap parking spot.  Its nothing against anyone who has one, I just felt that we weren't really worthy of having it.  Walker is only 2 1/2, and I push him in his adaptive stroller.  I am a fit and able woman, so why would I need a parking permit?

Then I remembered the day we took Walker to get his AFO's fitted and they were having a special ceremony at the school.  There were no parking spots on the school grounds, nor for three blocks up the road.  So me and my four kids walked all the way there, with no side walks.  There were however many handicap parking spots unused, but I refused to park in one without a permit. 

I also remember the day that I attempted to take all four children shopping, and the parking spots were so close together that I couldn't get out my door.  I had to crawl through the hatch back and everyone exited that way.  Its pretty tricky maneuvering a 30 lb kid while hunched over in your mini van. 

Then I remembered trying to mail a package at my local post office, with both babies in the car and no stroller.  We had rushed out the door and I will ill prepared.  So I left both kids in the car with the doors locked.  Don't worry its was in the winter and I was gone for about 5 minutes, but boy, that handicap parking spot was right out the door in clear view of the post master and it was empty!

So I filled out the paper work and got ourselves a handicap parking permit.  I don't plan on using it will malice intentions, in fact I'd be surprised if I use it at all!

Monday, September 6, 2010

Hat tricks

This weekend has been a little difficult with Mr. Walker.  It seems he is cutting teeth and getting a cold!  What this means is that I have had to revisit my bag of tricks to keep him happy and eating.  In this bag are all kinds of things that I haven't had to pull out in a while.  The first item is a vibrator. Yes, a vibrator.  Don't cringe it was a demo back when I was a Passion Party consultant and it does not look like a penis in any way or was it used!  Its just the perfect size for Walker since its cordless and the right size for him to hold.  It instantly calms him down.  When he is all worked up, starving but not eating, this is what I bring out to distract him! We also have a vibrating hair brush that I send to school (thinking that they wouldn't be too crazy about a purple vibrator in the back pack!) The other item is his weighted blanket.  I have to admit, we don't use it nearly as much as we should.  I just forget that I have it since its kept in the closet in his room.  This fits nicely over him and me, which even makes me feel calmer.  He seems to like it when he is laying on the floor.  The only problem is that when he rolls over he gets all tangled up in it. Another sure fire way to make him "change the channel", is a vibrating Bert and Ernie head.  When you push their mouth, it laughs while vibrating.  This always makes him smile! Last but not least is the ole stand by Tylenol .  Yup, when i can't get him to calm down, when we can't figure out what is wrong, then we give him the dose.  I hate 'druggin' him, but honestly, he can't tell us what is hurting and often after a day or two we figure it out and it made sense to give it to him. The problem with this is that I can't gauge then if he has a fever or not. So we are going to ride it out (what else choice do we have), and hope that this is over fast!  Otherwise, I might just whip out the bottle of Southern Comfort.... for me not him silly!

Tuesday, August 24, 2010

Moving towards Acceptance

This weekend when I was out for my ladies night, my good friend Courtney and I were discussing my new sticker for my car "Welcome to Holland".  I was so very excited to get this sticker and display it proudly.  Its almost like a secret club that only if you live in Holland, would you get.  I will share the poem with you, just click here. So its really not all that secret but I am finally coming to a place of acceptance and understanding.  The interesting thing about this discussion with Court, we were comparing how it made us feel the first time we read it.  For her, the poem really hit home when they told her in the delivery room that they thought her daughter had Down Syndrome. (I hope that is really accurate Courtney!) For my journey it wasn't so clear cut, the realization of Walker's delay.  So instead of getting off the plane directly in Holland, we have been rowing to shore in a two man row boat and looking at the coast thinking... hmmmm... this isn't Italy after all! (you really have to read the poem to understand my reference here... so go read it, here!)

This post is really fitting for me today since we just returned from a visit with Walker's neurologist. Its been almost a year since we last visited him, mainly because I kept pushing it off. When we last met with the genetitist, he suggested we have the neurologist do a spinal tap on Walker to get blood cells which could then be tested for more rare disorders.    

The problem is that Walker is still a mystery to the medical community.  His MRI and all genetic testing come back normal. Dr. Brain (neurologist) explained that this happens 30 - 40% of the time.  They just can't explain why a child is cognitively and physically delayed. As time goes on, there may be newer things to test for or other things may become apparent.  But he did agree that there is no rush for a spinal tap, since it really wouldn't change anything that we are currently doing for him.  I point blankly asked him, if he is then considered in the MR bucket (Mentally Retarded) and he replied yes.  I also asked if a lower IQ would inhibit his physical capabilities and he explained yes. Walkers reflexes are good so they don't believe that there is a physical reason he is not moving on his own etc.

As I said I am moving more in the direction of acceptance and although I may have sounded matter of fact in his office, I just had to be straight forward with the questions that are lingering inside myself. Of course, with this comes more questions and worries.  Like, what kind of a life will he have? What kind of a life does that mean we will have? What impact will this have on Sawyer?    

I know that all parents have worries, but take it from me, when you have "normal" children your worries are where will they go to college? will they get along with other kids, when will they want to drive? etc.  Once you have a child with special needs your worries are more constant, every day.... like what is the life expectancy? how can i afford to take care of them after I am gone? This worries of course may be thought about for "normal" children, but its more of an in your face situation when looking at Walker everyday.  Little things, like at breakfast, "will I have to spoon feed him for the rest of his life?", or at bath time "how am I going to pick him up and put him in the tub when he is a teenager?" Its not that I want pity or a badge of honor, it just means that some days my mind is else where and I don't always want to be the bummer of the party when people ask "so how's he doing?". I think that this is a life long transition. Each day comes new challenges, and new questions or the same old ones, but I know that he is loved and he loves! 

I wish I could end this blog with some spiritual or uplifting phrase about his purpose on earth or guiding forces but the truth is I still  haven't quite figured that out yet. There are still more lessons from Walker that need to be learned.

Thursday, August 19, 2010

Food issues

Some time ago, not exactly sure when but at least over a year ago, I decided to put Walker on a diary free, soy free and gluten free diet.  He had always had reflux, even when I was exclusively breastfeeding, and I was looking for some answers to his non gaining weight issue.  The diet seemed to really help him, once we got through the whole detox part. Lately, however, I have been questioning this diet for him.  I feel that he hasn't really ever moved past the baby food stage, due to his motor capabilities, but what things can we do to spice up his diet and maybe motivate him to start chewing? With so many restrictions its not as simple as just pureeing up what we have for dinner and giving him that.  Its a process to cook, mash and freeze his foods.  Some days I am just to plain lazy and opt for the ready made baby food jars.  However, my wallet really feels the impact of those days! I am wondering how I can slowly put these items back into  his diet and what the ramifications might be? I  just don't know where to begin!

Monday, August 16, 2010

Good and bad

Good days and bad days, we all have them! Some people have more than others, some have them all in one day with the pendulum swinging back and forth. While you are in the middle of a bad day, its hard to see the other side. When Walker is having a bad day, the whole house is having a bad day!  Its not because he is such a tyrant that it explodes everywhere, its more because we cannot help him figure out what he wants or what he needs and we are exhausted!

Communication is something that most of us take for granted.  I used to morn the fact that I have never heard him say "mama" or wonder if he will ever tell me he loves me. But now, I am fully understanding the frustration that he must have at not being able to tell me what he needs. Last night he was very tired, and we put him in his bed, but after thirty minutes of him rolling around in there I figured he must still be hungry or thirsty. When I brought him back out and offered him a bottle he drank it but was screaming the entire time.  He was throwing his body around  and stiffening his legs.  He was obviously really, really mad!  So I put him in his chair, mashed up a banana and offered him that.  He relaxed and ate, (but still was a little grumble)

These moments come often and sometimes everyday. I can see how frustrated he is and how mad he becomes when we don't know what he is trying to say! His speech therapist and us at home are working with him to do some simple signs or reach out for options, but I am not sure cognitively if he gets it.  I am worried that he never will!  What kind of a life is that? I fast forward ten years, and think, "man, how am I going to handle a teenager like this?" At the same time, I wonder, is he signing in his own way and I am not seeing it? Its hard when you are tired and trying all the tricks in the book to stand back and recognize if he is in fact doing something to tell us. I just hope with repetition and time we both can figure this out!  I would like more good days than bad for him!

Saturday, August 14, 2010

Hoovering???

I've been a little quiet over here, and also on my other personality page, but the truth is I have just been in a real funk and didn't want to spread the germs!  Not sure what the deal it, well, maybe I do , but am not ready to disclose on the wonderful world web!  All I can say is that "this too shall pass".

On happier notes, Walker is off from school for two weeks, then everyone goes back and it will be just the Poo and I.  Hmm... not sure what we ever shall do with ourselves!  Ha!  But my first order of business once he is back in school is to actually go and spend an entire day just observing his class.  I never pictured myself a helicopter mom, but everything that I envisioned for him as huge pluses to going to preschool early, I am not sure is being done.  I don't want to jump the gun, especially since he is getting a new teacher and she will have to get the whole class in order.  So I figured if I can go in, sit in a corner and take notes, then go back with my suggestion I may not seem to pushy, (right?).  I just want him to be engaged more so then he would be if he was home. That is the point of school! 

I will keep an open mind, but I know and strongly believe that I am his voice! It is also my job to make sure that he achieves his highest potential and if that means I make some waves... so be it!

Monday, August 2, 2010

Hugga Bebe

Just have to take a quick moment to give props to a new product that I recently got for Walker.  I had seen it on a fellow bloggers post who recommended it for children like Walker that have little trunk control.  I had been eying it for a while but wasn't sure if he was too big for it.  So after reading her post, I figured I would give it a try.

It came the end of last week and it is great for him!
Its an insert that goes inside most of anything.  Its called Hugga Bebe and it is pretty inexpensive. Especially since this activity gym has been sitting in my house for almost three years and he hasn't been able to enjoy one minute in it!

Don't tell  his P/T but he is actually pushing up with both of his legs!!  This is amazing since he hates to weight bare!  Sure he has a stander but this is something that I am not afraid to leave the room for a minute with him in it!  

The only downfall is that it is hot, and Walker is a hot and sticky kid to begin with and its August, so his time in it is limited just so that he doesn't come out a wet sweaty mess!

I am very excited about this and so is he!

Wednesday, July 28, 2010

In need of some shut eye!

Last night we had a tough night with Mr. Mr.  it seems that this goes in cycles.  We have a few days of great sleeping when I feel that I might actually get a chance to sleep a straight five hours and then in an instant it all goes to pot!

Now couple that with Miss Poo who only goes to sleep by either nursing or being on her daddy, and you have a two very cranky and tired parents.

So what do i do? I read recently that there are good ages to try and sleep train when a child is developmentally in a better place to do so.  The next stage that they recommend that she will be in is the 12-15 month range when separation anxiety is at a low and their activity is at a high and therefore falling asleep may be easier.  So what is a mom to do?

We do the whole bedtime routine, but I wonder if I wait to late to do it.  We  I have tried the sitting next to her crib and then gradually move away night after night and that just seems to piss her off more.  We I have tried the all out cry it out method... and man....that means war!  Add to this a dad who doesn't like to hear her cry but doesn't really want to be in charge of the bedtime routine and it gets truly exhausting! 

So I am reaching out, to anyone, and I mean anyone, who can and will give me some tips as to how they got their children to sleep!  Please!  My brain is being eaten alive by the bed bugs!!!

Monday, July 26, 2010

Dinner and a Show

Frantically starving, that is the only way I can describe Mr. Mr. when he is over hungry and refuses to eat.  Its like he doesn't understand that if he just opened his mouth and let me feed him his aching stomach would feel so much better.  So I am resorted to all kinds of tricks, I strap him in his chair and move it back and forth with my feet while singing "row row row your boat", I do joint compressions, working my way up his legs and arms and then in between try and get the spoon in his mouth, I tickle him, (or at least try to amuse him, but to no avail) I dip his binky in the food and try to get him to taste it, or sing "itsy bitsy" spider and put his fingers in it then wrestle them in his mouth.  Often he will take one or two bites then we have to start all over again.  Sometimes I will sneak it in when his mouth is open in protest (don't tell his speech therapist!) Its exhausting!  But after about ten or so spoon fulls, his brain is connected to his stomach and he realizes, "okay, this is making me feel better". Then we both know that it was well worth it! The trick is to get the food in him before he gets to this point.  Usually that means just sticking to his routine and he is golden, but with school he has been coming home exhausted and sleeping a lot.  This has meant that he has slept through his regular scheduled meals. (he eats approximately 6 meals a day!) Needless to say, we have had a lot of activity at the kitchen table.

The ticket booth opens at 12 - discount for group rates.    

Thursday, July 22, 2010

And now for a poo break

With all the excitement of Walker going to school, it wasn't intentionally overlooked that miss poss has started walking.  Trust me, its not overlooked, just glance around my house and you can see the destruction!  Watching her amazes me everyday.  As I have previously mentioned, I went back to work with my older two boys when they were 6 weeks old.  I feel like I missed out on so much of their development and didn't really get to enjoy that short time between baby and child.  With Walker, its different. Its very obvious to see now how Sawyer at 11 months and 18 days old, has surpassed him in every way.  Its a little sad for Walker but the flip side,is its exciting for Sawyer.

A friend of mine coined them yin and yang because i had sent her this picture.


They truly are Yin and Yang:
  • she eats only sweets
  • he loves everything green
  • she sleeps as soon as the car moves
  • he refuses to sleep in the car
  • she wants to sleep in our bed
  • he needs his own space
  • she has to be on the move, all the time
  • he loves to just snuggle and chill
  • she is a social butterfly
  • he is timid and quiet around people he doesn't know
  • he loves the shower
  • she loves the bath
  • he can't stand having dirty diapers
  • she will walk around all day and not care
As time goes on, it may be difficult to watch Sawyer continue to surpass him, but I want to celebrate their differences! Together they are a great fit!

Saturday, July 17, 2010

First week of school

I know you all have been anxiously waiting to hear how Mr. Mr's first week of school went.  I thought about blogging several times during the week but it just didn't happen.  I thought that with him being in school I would have so much time on my hands, but guess what? three other children just came in and swooped it away!

His first day was a little rough for dad and I.  Daddy stayed home to make sure he got on the bus okay and we headed up the hill to the road for pick up.


I wasn't sure how he would handle the bus, since loud noises and quick movement sometimes startle him. But the lift wasn't loud and the bus vibrates with the engine so I think he liked it!
Daddy and I followed him to school to make sure that the ride went smooth.  The plan was that if he wasn't upset I would just leave and he wouldn't even know I was there. (One advantage to having a child with limited sight).  And he was fine.  Daddy, on the other hand had a hard time.
The day went well and his notebook said he did great.  
Tuesday I went and peaked in the window around 11:30.  I had already warned his teacher that I may be a stalker for a little while but to not be alarmed.  Of course when I looked in the window they had him underneath it so I couldn't see him.  At that point I was already at the school so I had to lay eyes on him. I signed in and went to the classroom door.  He was sitting in a feeding chair and they were getting ready to feed him lunch.  He was crying, but he usually is very impatient when it comes time to eat,  so I chatted with his Vision Therapist and Old Speach therapist then looked in on him again.  by this time he was chowing so he was fine.  
Every day we wait for him to get off the bus around 3 o'clock.  This is a long day for him!  He is exhausted and then sleeps for a few hours.  We are trying to get him into a routine to only sleep for an hour or so, otherwise he keeps us up until midnight!
Friday I checked on  him again around the same time and he was upset again.  I think he is just hungry, so I will send in a note suggesting to feed him more at snack which will allow him to go a little longer for lunch time. All in all, its good.  Friday morning Ramiah reported that when they were waiting for the bus to pick him up, Walker suddenly picked his head up and started smiling.  Within  two minutes Ramiah was able to hear the bus coming so he felt that Walker had heard it moments before and was excited to hear it coming!

Its hard letting go and allowing someone else to care for him.  I was never this nervous with Mason or Dylan, but then again I worked full time and didn't really have a choice. I know that they can give him more than i can and that it is the best thing for him.  I am just happy that he seems to like it!  It makes it a lot easier on all of us!

Wednesday, July 14, 2010

HBOT's ripple affects

Its been some time since I wrote about HBOT, we haven't been going to sessions because he has started school, and we went on vacation and its just been a hectic place around here.  Interestingly enough, though, we are still seeing the affects of the HBOT every day.  One of the largest impacts is that Walker does not freak out about water any more.

I have blogged about it previously, here. But I must say that things have gotten much better!  We changed up the routine for bath time, and instead of trying to get him used to baths, we switched to showers in his bath seat.  This cracks him up! He always took showers with daddy but as he is getting bigger, it has become more of a challenge (don't tell daddy, he'll never admit it!).  Also, with the amount of poop explosions that we have around here, I needed a way to bath him myself. 

The hugest impact of this was evidenced while we away on vacation.  Even though we were in Maine, the temperatures still reached 95!  We rented a house on the lake and finally on the fourth day of misery for Mr. Mr.  we gave it a try.  Guess what?   he loved it!!  This is HUGE!!!

He splashed, he kicked, he laughed and he sang!  It was awesome!  He stayed in the water for almost an hour, loved hearing the older kids play and just being cool.  We were a little afraid that we might have created a monster since it was still so darn hot! But he ate and slept well that night!  so it looks like I may just have to get that kiddie pool afterall!

Tuesday, July 13, 2010

Play away books

In preparation for vacation I took my older boys to the local library to get out some good reads to bring with them on the  trip.  For many people, this may not be terribly exciting news, but for us we were psyched!  Growing up in our township we did not have access to the local library system because the tax payers in our area do not feel the need to pay into the library tax.  This meant that we couldn't use any libraries.... anywhere!  When we moved to our current location, the township here made a deal with the library system to have only residents who request it, to gain access to their system.  I am a lover of books, so of course I made sure we signed up!

I also invited my nephew and niece to come along since they don't have library access either.  I asked the librarian how many books we could take out and she said up to 50.  This seemed like a huge amount but by the time we were done, we checked out over 25!

The most exciting part was discovering audio books for Walker!  It is a series that they have of audio books, that come pre-recorded on a little digital machine and all you have to do is put in a AAA battery and ear phones!  This is awesome!  I am always looking for things to occupy Walker and cannot just plunk him in front of the television, so this was a great idea!
Here he is listening to Clifford and really seemed to enjoy it!

Wednesday, June 30, 2010

Love my washing machine!

While attending SUNY New Paltz, I went to hear a lecture on the work of women throughout the world.  One of the most shocking statistics was the amount of time that women, all over the world spend getting water.  I don't remember the exact number but it was well over 80% of their time is spent walking and carrying water!

This really hit home this week with two children and a stomach virus!  In the course of three days, I gave five baths, and did 4 loads of laundry... just from the affects of this bug!

I couldn't imagine what I would do if I didn't have running water!  I know it seems like a simple thing for us Americans but I really appreciated having a bathtub and a washing machine!  I remember not too long ago, when I didn't have laundry in my house and had to take everything to a laundry mat!  With all the nasty clothes and bed sheets, I was really appreciative of that!

So, even though I had too clingy grumpy kids, I reminded myself that at least my house still didn't smell like a porta potty!  For that, I am thankful!

Monday, June 28, 2010

Last week of EI

This is our official last week of EI, (Early intervention).  A lot of parents that I have spoken to who are making the same transition this summer state that they are so ready to be done. I can't say that I am!

EI is not just a therapy technique it is a way of life.  As your young child develops there are people in and out of your house at all times.  Depending on the level of intervention this could be one person or up to five or more!  Often they each come several times a week and its at all different times of the day.  For us we had five therapists, four of which came twice a week and one came three times a week.  In the beginning, it wasn't bad because we only had two, so we were able to ease into it.  As Walker's development continued to move slow, we added a few more.  Initially I was worried about how my house looked and made sure I was showered and presentable, but as the time wore on these people become family.

They have witnessed me un-showered, still in my pajamas and even bra-less.
They witnessed my dogs puking on the floor and running away.
They have been there when my older sons are fresh and not doing their chores.
They have heard arguments between my husband and I.
They have seen me cry.

But they also
have been there the first few days of Sawyer's life.
they have helped us celebrate two of Walker's birthdays
they have sat and drank coffee with me and discussed the ills of the world
they have watched us grow as a family and learn to understand the impact of Walker's needs
they have shared many laughs over the course of two years
they have become not only good friends, but family.

I will miss them all dearly!

Friday, June 18, 2010

GAIT

My husband and i have a strong philosophy when it comes to looking at alternative help for Walker.  We are all for it, as long as it does not cause him pain and that the methods are to give  him a better quality of life, not just search for answers.

Have I mentioned how great our social worker is??? She is fantastic and was able to find money for Walker to go to an alternative therapy center right around the corner from us.  Its called GAIT.  the idea is that while riding horses, children with special needs are able to learn confidence, work on their strength and also work one on one with a speech therapist. 

Our first appointment  to meet the director and tour the farm was wonderful.  I knew it was the right place for us, when the director came up to me while I was feeding Walker in the car, saw that I had two children, and said we could talk right there without having to get everyone out of the car.  I thought "boy, these people get it!" Martha was very detailed about explaining how everything works, reassuring me that the horses that are used are the gentlest. We set up our next appointment and I was very excited.  (Did I mention how great our social worker is?)

His first session went pretty well considering it was at 3:30pm, and I had to wake him up from nap in order to get there on time.  There were three people, two on each side of him and one leading the horse.  Peter, the horse, was very mellow and looked like he knew the drill.  Equipped with a helmet, they put Walker on Peter backwards lying down.   It is a lot of work with the helmet on for Walker to keep his head up, so he rested it on the rump of the horse.  He seemed to like to feel of the movement and the horse's hair.  A few times they stopped and had him sit up and ride a little, but they did not push him, instead just listened to his cues.



I am very excited for this opportunity to see how Walker does, its great sensory stimulation too!

Saturday, June 12, 2010

Food issues

Gluten free
Dairy free
Soy free
No eggs
No onions

What do you feed a growing boy who can't chew? I am at a lost, and I feel that his rejection to food lately is because he is bored!  Yesterday I went against the diet and fed him a scrambled egg.  Actually, I had made it for Miss Poo but when she refused it and he wouldn't eat his pureed green beans, I gave it a try.  He loved it!  He was very happy mushing it around in his mouth!  And nothing bad happened, he seemed fine the rest of the day and slept well.  So what else do I give him? I have to admit, his diet is a lot of baby food, because... well... its  just a lot easier.  Yes, i am lazy, but baby food covers the main ingredients of his diet - vegetables, meat and fruit.  We add some oil for fat and calorie intake, but its hard.

What do people feed older children that cannot chew? Should I reintroduce these foods one at a time and watch for reactions?  We originally took him off of everything and his reflux went away and he was a much happier child.  I am so afraid of going back there! Soon he will be going to school, and I can't really send him there with baby food!  The whole point is to move him forward!!  Urghghghghghghhhh

Monday, June 7, 2010

Dream tease!

The problem with sleep is when you aren't getting it you get accustomed to the delirium, you hunker through with coffee and exercise, you just relinquish the thought of ever getting real zzz's, then the unthinkable happens.  You awake at 4 am and panic because no one has woken you up yet, then for the next three hours you wake and look at the clock wondering when the silence will end.

When the next night it happens again, you awake feeling so good!  You had forgotten how awesome a full 7 hours of sleep really feels!  You are excited and hopeful! Then WHAM! The next night they are up again, and now the problem is you were teased! You were reminded how it is to actually sleep uninterrupted!  So how do you go back again? I'm on my fifth cup of coffee and still feel like I am dragging ass!

My husband and I play a little game while in bed at night, we hear them get up and then its a stand off, pretending we are both still asleep, making sure not to make a move or sound until one of us caves and gets up.  then the game is really on, we take turns one after the other getting up trying to placate the children while essentially doing nothing really to satisfy the child.  I usually cave first, change the diaper and feed them, while he pretends he is still sleeping.  On rare occasion I will specifically ask him to get up and feed the boy child, but I know I can only do this about every three or four days, otherwise I am pushing my luck!

So how do we go back? I know that its within our grasp! 

Saturday, May 29, 2010

Second thoughts...

I thought I was ready, I thought that with child #3, I knew the drill, was understanding about the transition, knew the benefits out weighed the negatives, but must admit... I'm having some second thoughts.

Thursday we went and registered Mr. Mr. for preschool, then we went and visited his classroom.  I knew he was tired, and really hasn't been himself these last few days, but wanted to get another feel of the room before we ship him off there in just a few short weeks.

The teacher welcomed us and the students were all sitting neatly in their circle time positions. I was able to fit the stroller on the end and we just observed what the kids were doing.  Mr. Mr. was just listening, soaking in the different sites and sounds.  Things were going good, until the kids were done with their calendar and began to sing songs.  These put Mr. Mr. on the edge.  10 little voices singing around him made him get that panic look on his face, but honestly he was holding it together, and so was I.  I usually get prepared to bolt,  to remove him for the stimuli as quick as possible, but even though I wanted to, I kept myself in check waiting... anticipating.  Things were going good...until... the big fat hairy spider song came.  This is the second verse that the children do to Itsy bitsy... not sure if it was the loud stomping and raised voices, or the change in routine... probably a combination of both.. but that was enough to put him over the edge.... so we left.

I know that it will be a change, and that he will get used to the routine and understand what is happening, and that it will be a process... but I'm still the mamma!  This is my baby!  I hate to see him upset, I worry that they won't know how to calm him, that he will be over stimulated and hate school! That he's too young, that when he comes home from a long day he will be extra miserable!

I don't remember being so worried when Mason and Dylan went off to school, but then again, I was working full time so they had been away from me since they were 6 weeks old!  Besides, Walker is different!  He is special!

I know this is normal and am not changing my mind.... its just nerve racking, I'm sure I will be following that school bus, tissues in hand.... 

Wednesday, May 26, 2010

A peak into a siblings mind....

While cleaning out Dylan's book bag, I came across the following:

Walker is my hero for many reasons. See Walker is delayed.  Which means he can't do what he's trying to do, like walk, crawl and talk.  With him being my brother I've learned many things. Like how to help hm in many ways.  Games an other activities to play with him, but what he's really shown me is no matter who or what you are, your still a person.  Now I love Walker very much and its sad to know he may never be like me, I wish that I could help. I wish I could get the money to get him a machine to make him a normal toddler. 


Sunday, May 23, 2010

The big day

Individual Education Plan... i guess that is what it stands for... if not, its close enough, and its tomorrow. 

Yup, tomorrow, which means that me, daddio and mr. mr. will head over to the local public school and sit in front of a group of school administrators and educators and plan out what the next year of life for Mr. Mr. will be like. 

If you are part of the "special needs" crowd, this process comes with horror stories and celebrations.  I can understand how things, emotions and language can get out of hand when one is faced with discussing the weaknesses of their child, but honestly I am okay with that. It is the path to get him what he needs, and what I want him to have. I think I am pretty well prepared and feel confident that most of it is a "no brainer" if you will.  But on the flip side I don't want to assume (the whole ass out of you and me thing) anything. So I have my list of the issues, my wants, needs and demands... I've also been given some secret ammo if needed.

wish us luck!

Tuesday, May 11, 2010

Primo Sports

Its no secret that I have been having a difficult time adjusting to our new life.. a family with special needs.  Social events have been a mixture of guilt and frustration, with no one really at blame but the inner demons that dwell inside me.  After our last birthday party I swore off ever attending another one.  There is just no fun in sitting by yourself with two babies and watching the party go by, with kids yelling and jumping and eating cake.. all of which my child can't do. but the problem is that I really do like the people hosting the events, and I like their great kids!  I thought I had a solution last week, when a close friend was having a party for her three year old, I figured I would take Miss Poo and leave Mr. Mr. home for his therapies.  This would mean that i could mingle with the other moms and not have to juggle two little ones.

Well, the best laid plans.....

so here I was last week, last minute throwing both kids in the car, and off to the birthday party at a sports place.  

I figured I better make the best out of it and pysched myself up
.

 Walker was ready for the party and we found it easily.  Inside there were indoor soccer fields, goals, cones, and astro turf all throughout the building, and I was quite skeptical how exactly we would manage but figured to give it my all.  so I wheeled Walker right out there and pushed him around, making him kick the soccer ball and score a goal. (I was doing more exercise than I have in a long time!)

Coach Jimmy who was engaging the children really included Walker!

Walker did so great!  He did get a little scared under the parachute but otherwise was really enjoying it!  So were the other kids!  Even Miss Poo got in on the action.


So it was a great day!! I got valuable information about a Special Ed program they run on saturdays and Walker was pooped!

If I hadn't brought Walker they would not have known about us, and I woudn't have learned about their program! 

So things do happen for a reason!

Sunday, May 9, 2010

Ahhh... now I get it

Not long ago I was complaining to a friend about a relative of mine that just never seems to appreciate anything.  Whether it was clothes, food or rides, it all just seemed to be expected, and would pass without so much as a thank you.  My friend pointed out that since this relative really didn't have much, maybe she was just tired of saying thank you.  At that time I really couldn't comprehend it.... today though it clicked.

For parents that have children with special needs, they are tired and exhausted every day .  There is always something to do, fix or make.  For mothers out there, think of having an infant, those exhausting nights, the frustration; or think of the toddler years, the power struggle the need for independence without the ability. Now think of this for the rest of your life.  This is what parents with special needs children face every day.  No, they are not looking for your pity, but they are tired of asking for help!

  • Don't ask them what is wrong when they are having a bad day, if they explain it they relive their guilt for feeling it. 
  • Don't ask what you can do, just jump on in and do it.! 
  • Bring a casserole, give their dog a bath, mow their lawn or simply send a note to say hi..
Because if they have to ask for help, its just one more thing on their to do list.

 

Monday, May 3, 2010

Walker's eval

Today was Walker's evaluation for preschool.  I was a little nervous about it because whenever the evaluations come its a hard pill to swallow.  Mostly the evaluations are about what Walker "cannot" do, this is just because its how the State and education system look at it to determine what services he is eligible for.  Its not a fun time for me, because it often just reiterates all of my fears about him.  Ramiah chose to stay home with Sawyer and my guess is its because he feels the same way, but one of us had to bring him so it was me!



I must say that the people at the center were really great!  The evaluation was done all together, and although it was a little overwhelming answering different questions simultaneously it was easier to get it over and done with!

The last part of the evaluation was what I was most interested in seeing, it was his evaluation in the classroom.  Since Walker has many sensory issues I wasn't sure how he would react to an environment with lots of action. He was also getting tired since it was cat nap time plus he did a lot of work during the evaluation that would normally tire him out!

I am happy to say that he loved it! At first he just sat pretty quiet, listening, but as the aides and teachers fawned over him he opened right up!  he was blowing raspberries and making his excited noises. 

I also have to say that one particular evaluator was sensitive to how the numbers will come out for his scores, since they will come out low, but wanted to prepare me for it.  It was refreshing!  Often times parents come out of doctors appointments, evaluations and other social situations feeling defeated once again that their child just doesn't measure up.  It just reinforced that this center is the right one for us!!

Saturday, May 1, 2010

A beautiful day in Walden

Today was a GREAT day!!  The weather was beautiful and I was reminded how rich we really are!  Friends and family came out to walk by our side for an great organization call Able Children. This was their second year of promoting their organization and raising funds and I can't spread the word enough!!  This organization gets equipment out to Special Needs Children who either can't afford it or get lost in the bureaucracy of insurance and can't get what their child needs.

The day was beautiful!  Mason and Dylan were excited to be #1 and #2 (although, I think mason was a little upset to be #2)

My husbands brothers came out and so did my mother and sister with her family.

Dylan was going to run it, but then at the last minute got an escort to find us!


The course was pretty hilly, but definitely beautiful!






Even my friends from Stroller Strides came out and three of them are pregnant!!!

Thanks to Walker's PT he was nominated to get a corner seat!  Thanks Marcia!

So after our beautiful walk through the town of Walden, they presented Walker with his chair!  I know he will get a ton of use out of this chair! 

yes, we are rich!  rich with love from our friends and family and a community that supports us!

Tuesday, April 27, 2010

Friends Needed

I feel like the new kid in school, have you ever been that kid? I have, several times in my life. 

Its that feeling of wanting to look your best, do your best while simultaneously feeling out the other kids in the class to find where you belong. 

You are afraid to pick the one person to eat lunch with, you want to keep your options open but not be alone either.  You question if you can take anyone at face value? or if there is some secret lingo that you aren't clued in on, worse yet, could you be what they are laughing at? You are afraid that you might come across to desperate, or eager.

Well, that is me, once again, but this time in my grown up life, its in this new world of disabilities, or is it called special or handicapped? I don't even know what the acceptable terms are and this is my child!

I've been feeling isolated and lonely these past few months (no offense to those who have been in my life for a while or my newest friends!) This is more about my personal journey with Walker and how my family now fits into this world, that I needed to find a "place" a knitch if you will. So I started a meet up group, Orange County's Special Kidz , but it isn't really taking off like I had hoped!  Its just a matter of getting the word out.  So if you have any ideas, or friends or friends of friends, please pass the word on.

I'll be the girl in the sweater, with a bow in my hair and carrying a sign "friends needed"

Tuesday, April 20, 2010

Extra baggage

A large part of our HBOT journey has been meeting and connecting with so many other parents and children, all looking outside the box, to give their children a better life, in whatever form that is.  Monday I met a gentleman and his daughter in the waiting room.  She was about 10 years old and has Autism.  That day, I took Walker by myself and when its just him and I we use his adaptive stroller. The man commented on what a nice stroller is was and I went on a commentary about how hard it is to carry him around these days and that I have to start really using his equipment..blah..blah..blah....

He just smiled, and gave a little chuckle. My face must have shown my confusion, because he apologized and told me that he is still carrying around his daughter because she has outgrown her wheel chair.  I was marveled!  She has to be at least 75 lbs!  I didn't want to be too obtrusive and ask questions,but couldn't help but give some reference to our TRAID program  here in Orange County. I also gave kudos to my social worker and therapeutic team, (wait, did I say mine? I meant Walker's).  His daughter was called into the office and we said our polite "take cares" and "nice talking with you" and he flung her up on his shoulder and carried her into see the doctor. 

It just made me think about our situation and wonder how many children out there do not have what they need? Was this girl being carried around because of insurance issues? because they did not have the right resources to tap into? or because it was just easier on some level for him to carry her around than deal with a chair and then transportation and all that comes with it?I just felt horrible for both of them, for the dad who is lugging a 75lb daughter around and for the girl who has no sense of independence.

It also makes me nervous about leaving the comfort of Early Intervention and being in the real world of disabilities. We have to start thinking long term, in regards to what Walker will need and how to best prepare ourselves for that.  I don't expect to have a custom built home, but I certainly don't want to be lugging him around at 75 or 100lbs! 

Saturday, April 10, 2010

HBOT Day 18

I had an octopus in my tank today!!  he was grabbing the tubing, pulling the mask off his face, grabbing the oxygen bag and just being an ick.  For a few brief moments I was getting frustrated, then I realized... he's being two!  this is what we wanted right? We want him to be moving around, being a pain in the butt!  I just laughed and enjoyed him being a toddler!

After our session we went over to the organic grocery store to pick up a few things.  I put Walker in a grocery cart because he is getting to heavy for me to carry around a store.  To my surprise he held himself up in the cart!  It was AWESOME!

Tuesday, April 6, 2010

The Calm

Overheard in the HBOT parking lot today:

"yes, the session went well, she had a bunch of different colors, and then we will come back at 12:30 to dive and then she'll have another session at 2"

dad is talking on phone while daughter walks around the car, (daughter has autism)

"yes, she is doing well... ah, (man pauses in conversation and makes a huge sigh) okay, well sofie just keyed my car...how do I know?...well...she spelled her name....let me go"

This man is amazingly calm, his daughter just scratched her name in the side of his car and he doesn't get mad or scold her, instead he puts her in the car and just stands there looking at her art work. 

Sunday, March 28, 2010

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. 

Friday, March 26, 2010

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!!

Tuesday, March 23, 2010

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!!) 

Saturday, March 20, 2010

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." 

Wednesday, March 17, 2010

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!

Monday, March 15, 2010

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!!

Sunday, March 14, 2010

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!

Friday, March 12, 2010

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!

Tuesday, March 9, 2010

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!

Friday, March 5, 2010

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!!

Thursday, March 4, 2010

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!


Tuesday, March 2, 2010

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...