Saturday, September 19, 2009


Well, these past days have been something different alright! I've used my stander, although it is a bit scary (especially the getting in and getting out parts). Daddy flies me over to the flat stander, I get all belted up, and then I get inclined to 45degrees. So far I can be over an hour with no problems. When Daddy takes me off it and places me in the bed, I fall asleep real fast. It leaves me exhausted! But all in all I do like it. Seeing everything from a different perspective is a plus. And seeing everyone getting the wow factor because I am so tall is simple fun!

Now, the wheelchair is another story... The days that everything goes right I can be sitting at 45 degrees without problems... But somedays I just can't tolerate it. Last Monday I scared everyone. I was placed in my wheelchair and taken to the computer so I can practice my clicking, and five minutes later I started choking. Since the wheelchair does not tilt, I had to be unstrapped and taken to my room ASAP so I could be suctioned and bagged... I came back up really fast, but it was scary anyway. This is just what Mommy and Daddy tried to explain to the people who ordered the wheelchair... I need to go flat when I have emergencies. Being at home at least Mommy and Daddy and NurseMisheila move fast... but imagine if I were out... Imagine if by any chance I were in an elevator, where there is not even a chance to be placed over the floor. It is a simple big issue, as it is very life threatening. So... Now my minions will have to do something about this... I may be able to use the wheelchair within the house being very near my bed, but not outside. And even in the house, everyone gets very nervous about the what if's of an emergencies (when every second counts)...

Besides the Monday drama, things have been good. TherapistPat have been on time as usual, making me use my skills over and over. Yes, I am ready for new stuff. I am learning my colors, and matching my animals. I am also getting more vocal, I let everyone know when I want service, when I want attention, and when I want to be left alone. Daddy got some appointments for me, so I can try some eye communication devices. That should be fun.

On Thursday I got a visit from the Eye-Gaze guy. I tested the system, but my crazy eye movement made things a bit difficult. I have some nystagmus that at times shows and at times it is not too noticeable... but for a camera everything is obvious and calibrating the equipment was quite a task. At least Mommy and Daddy got some insight on other approaches to communication that they can apply in the meanwhile, and some ideas on how to make some things work. He promised to gather information on how to use the equipment with patients that has nystagmus. I also got a notice from TherapistTracy, she will come soon with a clock-like communication device... Hopefully that will bring something new to the table. All this attention floors me! But hey, it's all about me!

And so, the weekend comes in, and family will gather for some indoor family fun (movie-mania). Many blessings have been coming my way, some in the form of old contacts that are reappearing, and some in the form of people who are trying to help. My whole life is in God's hands, and I know that he protects me and cares for me all the time. Of all things I may say, this is the prayer that says everything that I feel:

"The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures:
he leadeth me beside the still waters.
He restoreth my soul:
he leadeth me in the paths of righteousness
for his name's sake.
Yea, though I walk through the valley
of the shadow of death;
I will fear no evil: for thou art with me;
thy rod and thy staff they comfort me.
Thou preparest a table before me
in the presence of mine enemies:
thou anointest my head with oil;
my cup runneth over.
Surely goodness and mercy shall follow me
all the days of my life;
and I will dwell in the house of the Lord
for ever."

Psalm 23 - bible - psalm of david


Monday, September 7, 2009


And September arrived! The week began with TherapistPat arriving on time on Tuesday. I had a great session. I responded well to everything, and she feels that I am ready for much more. I was getting ready to go to my medical checkup, so the session was not as long... but it was great in matters of content. I've been showing off my making choices and paying attention. I need to hone those communication skills, I need everyone to know what I mean when I mean it!

So an hour later I ended up in the ambulance, to pay a visit to my pediatrician. As usual, Dr.Velickovic was a pleasure to deal with... but little did I know that she would end up giving me 3 vaccine shots! That was awful! That was on Tuesday and I'm still feeling it! And I have a mark in one leg to prove it! Besides that, the trip was nice and fast. I soon reached my room, and off to Zzzzz-land. These trips tax me a lot, you know, so I need my mandatory beauty nap.

Wednesday and Thursday were fairly uneventful. I follow my routine of waking up, making NurseMashaela read some books to me, getting my treatments, exercising, reading some more and watching Wonderpets. I'm getting into the routine of napping from 4pm to 6pm... Of course that is simply because doing so many things leave me exhausted! There is no rest for the wicked! I wake up in the early night, and then NursePeronette reads some more... And then comes the night treatment. Something always goes on.

On Friday Mommy went out during the day (that was VERY weird). The best part was that when she arrived, she had some stuff for me. She got me some crayons, some Play-Doh, and a small collection of DVDs. Well... I thought it was all for fun, then I realized that the DVDs are educational mumbo-jumbo dressed in sheep clothing... At first I was shocked. Just what Mommy think that she is doing? Brainwashing me to make people happy? Come on! As the night faded away, the Animals DVD had been drilled in my head... But in the end, it wasn't so bad. I actually had fun. And it all was a review of my flash cards and all the Baby Einstein stuff.

On Saturday NurseMashaela was on duty (a rare thing on weekends). Her stay was short, but I really appreciated it. I like having her around, she always makes things fun. Mommy had to go out, and when she came back she helped Daddy place me in the big room so we could watch my show together. That was fun. I kept singing to the show's songs, and chatting... even if Mommy fall asleep. I let her rest for a while, but when I wanted to watch something else I woke her up. Hey, it's all about me!

Sunday went on slowly and smoothly. Mommy and me had a spa session. she placed some green stripes on my hair with some bright beads, and then she lightened her roots. Yup, it was our official "beautification" day. That was fun, and it took the whole afternoon! I am starting to get the feeling that Sundays are the day to do the hard hair stuff. Hey, looking pretty is labor! Then I spend some time watching the Alphabet DVD... Loved the twists on the fairy tales stories. And so, a new week begins...

God: Thank you for all the happiness you bring into my life, for allowing me touch so many lives as well as for allowing me to receive so much love from them. Thank you for a humble home that is filled with warmth, for friends that always lookout for me, and for a family that doesn't forget me. Thank you for granting all the tools I need to grow smart, to grow strong. Help me achieve my simple goals: Communicating all I think, making Mommy and Daddy smile, showing the world that being different only means doing things differently and that life is precious and can always be lived to its fullest. Thank you for the miracle of life. May all other kids receive the same blessings that you have given me along with Health, Strenght, and Courage. Amen.