Hes Stronger than me!

So on Wednesday when I took Pokey to school, I went to give him a kiss on the hand. (We use the kissing hand, when he misses me he can take his hand and rub it on his cheek and think to himself that mommy loves him, mommy loves him,....when he was getting ready for school I read him the book called "The Kissing Hand" so he would not have any separation anxiety) Anyway..he looked up at me and said, "Mom, I don't need the kissing hand anymore"...I said "You don't?"...He then smiled and said "No Mom you are like God, you are always in my heart".
Talk about make me melt on the spot!!! I thought But wait.....I still need my kissing hand...but I didn't, I just stepped back and let him go, hes getting so big I cant even believe it.

Turns out he is quite the character too, since all of the adults in his class go by Mr. or Mrs. he feels that he can be called Mr as well and so in front of his name on all of his papers he writes Mr.! He has already been the line leader, calendar helper and classroom helper and he is very proud of that. He did get switched from the am class to the pm class but that was okay, he still has the same teacher they just had too many kids register for kindergarten at the last minute so at first his class had 42 students in it, now there are 20...much better!

I meet with the OT lady on Wednesday and they do want to put him on whats called a 504 plan. Its just a plan that clearly spells out any modifications and/or accommodations that will be needed for him. I think it rather silly to set it up now as being hes only in kindergarten, there is not much to worry about other than his writing and being careful in PE, its when he gets in the later grades where things become more extensive, but they feel putting it in place now would be the best plan of action. So i have gathered up all the literature I have from the Ehlers-Danlos foundation about meeting the needs of a EDS child and so on and will have our meeting on Wednesday, my fear is that they are just going to try so hard to "fix" the way he writes and hopefully they will listen and realize there is no fix, it is how it is and you can accommodate it, heck hes been writing for quite a while now and no, its not perfect but he can write more than most his age, who cares how he does it, the bottom line is he does it right!!

We were able to go the Puyallup fair last week. We got in for free and got a great deal on parking, then spent hours wandering around the fair. I would have rented a wheelchair but they were all out when we went to inquire about one! So we just took lots of rests. Pokey had a great time, he rode on rides, made a doodah bird, and got to be a cow in a play! We declined to try the chocolate covered bacon, Pokey and his Dad stuck with Corn Dogs and I had a Proshky...yum..

Grandma Julie is doing great, she got her staples out on Monday and has been able to take walks around the yard...one lap at a time. It really helps her spirits to be at home. They should have the results of the pathology of the cancer back this week, apparently they know its cancer but when it comes to kidney cancer there are many forms and it has to be tested to see exactly what kind it is.

And of course FOOTBALL season has started and that brings us to Fantasy Football! I played Pokeys Dad in my first game of the season and I am happy to report that I.....won!! and I plan to do the same this week! The Seahawks looked good but I tell ya I still cant stand our QB...by the way the first 5 minutes of our game went I could have smooshed that guy!! But in the end he pulled it out.

Growing Up and Letting Go...

Well today I did it. I walked with Pokey in hand, talking the whole way and I watched as he disappeared into the realms of his very first classroom. Today was his first day of Kindergarten. He was very excited but as we got closer to the school and he realized that he would not have his beloved "foxy" with him he did admit to being a bit nervous. I told him I would bring foxy with me when I came to pick him up and not to worry at all because after all we had our kissing hands. ( Wonderful childrens book by the way "The Kissing Hand" ) He is even more excited because our neighbor is in his class too, so he already has one friend in his class, Lucky!

We went yesterday and met the teacher and dropped off the plethora of school supplies that were required of us. He enjoyed the time there and I had no doubt that he will fit in just fine. His Teacher gave him his own pencil holder for his special pencils and I'm not sure if that made him feel singled out or special as he had a rather strange reaction, but then again he was nervous. The teacher quickly changed the subject and asked him what color play dough he would like and of course he said Orange so she promised he would be able to get orange today, and then wrote it down on her desk! That made me feel pretty good, she didn't want to forget, because I tell ya Pokey sure would not have forgotten!

We also had to go and meet with the nurse to return our care plan, she too was very nice. Austin warmed up to her very quickly. She told him at any time if he needed to ice his elbows ankles or knees he could come on in, and get the ice packs himself and just have a seat. She asked him if he knew how to use the ice packs and he said "oh Yeah". =) I was not sure if they would have recess and it turns out they do, so we shall see how that goes. He should be starting his PT soon to get those ankles strong strong strong! Or at least that is the hope, they are so darn loose now you can almost touch his toes to his shins! Sheesh.

I miss him already. But I have my Kissing hand. Pokey loves me Pokey Loves me. I was not the crazy parent that video tapped every moment for like 20 minutes, nor was I the parent in matching polka dots with my child...but I did snap a few photos and a short 25 sec video but I didn't cry!...Thought I might as I walked away but I didn't. I cant believe its school time already, theres no turning back from here. Hes a smart boy and I know he will do well, I cant wait for the stories he will have to tell me! But I do miss sleeping in on our Fridays!

Pictures of him yesterday when we went up to meet the Teacher.

Sitting at his desk Coloring.

This morning all ready to go!
He just adores this backpack!

Out the door at 7:50
I'm not sure, either hes nervous or hes sick of me taking pictures.

Just sitting at his desk.

We made signs for Grandma Jule this morning and I took Pokeys Picture with them. I am going to get them developed as 8x10s and have Pokeys Dad take them down to her. She was finally extubated yesterday afternoon but is very scared and it a lot of pain. Hopefully today she will be moved out of the ICU.

Yeah Yeah I dont keep up!

Okay so I know I dont keep up as much as I would like! So lets see here is a update of the last few weeks....well as far as I can remember!

The last week part of May brought a Dislocation of my R Shoulder... the chicklets managed to snap the car seat forward as I was reaching for a backpack in the front and my arm was caught in the seat..like a seat alligator, it ate it (my arm) and my arm just fell on out. It was already too late to go on into my PCP's office so off to the ER we went. The doc there was super nice...though there is just something about when you tell a doc that you dont do well with IV narcotics and that they just need to consciously sedate you that always makes them laugh. "well Gumby we will start out with A drug and a bit of B drug...and so on" Ha! After it was all said and done, he came back in and was like, "Yes Gumby you are right you can take as much narcotics as a linebacker be very adamit next time that you just need type C or D drug for conscious sedation right away" I just smiled and said thank you. (biting my tounge because I really wanted to say...told you so!)

My sister B graduated from the number one ranked nursing school in the country the University of Washington! I was very proud to see her walk through that stadium. Though I could have done without the 80 degree weather and no shade to sit in at all for the 5+ hours that we were there but oh well again it was worth it. Now if we can just get that girl a job she will be all set!

We went on a family vacation down to the Oregon Coast last weekend and had a blast! we stayed in a awesome rental house right on the ocean...it was "steps to the ocean" as they labeled it...well they forgot to mention that it was literally 70 VERTICAL steps down a cliff!! I mean there were nicely built stairs, but I do not do well with heights or stairs for that matter! I only made one trip down to the beach, so that was rather sad, but the view was incredible. Pokey managed to win 5 out of 5 random prizes at this drawing they were having at the arcade! He won two CD/radios two digital photo frames and one popcorn bowl set! Talk about lucky! I managed to run smack into a sliding glass door and pop out my R kneecap!! That was a first time for that one, it was late and i was rushing in from the hottub!....I quickly relocated it when I realized what happened and by the next day there was a huge bruise surrounding my whole knee. It swelled quite impressively and because I do not carry All of my braces with me on vacation I wrapped it with a cut up shirt and called it good. It spasmed up until yesterday and just had a sensation of fluid bulit up but now seems to be feeling better. Pokey is now convinced that we HAVE to get some hermit crabs as new pets, we did have some snails, that we brought back...they..umm did not make the trip...so Im not sure we would be the best crab parents if we cant keep snails alive...but we shall see. All in all we had a wonderful time in Linclon City but we would not go back there, it was quite a long drive and we have had much funnier times in other closer coastal towns.

We have no plans for the weekend, except rest, save money and clean the house! Next Friday at 5am we take off for Idaho until Monday. We will be spending 4th of July with Uncle B, the rolling hills the 4 wheelers and the river.....cant wait!

Pokey has his kindergarten test on 8/4....I hope it goes well, but then again if not oh well, no pressure. The paperwork went over a lot of what they will be testing, the only thing I worry about is his fine motor skills, he cannot snap buttons (he can button normal ones but not snap ones) and he gets frustrated when he tries...he tries so hard but his fingers just wont let him, they just bend back way too far. He also still holds his pencil his own way, there will be no changing that. Even when I spoke to the Hand therapist she said some children just develop their own style so I am pretty sure that is where we are at and I am ready to enact a 504 plan for him at school so he is not pressured to change this and will not be hindered in doing so. Sometimes I just think to myself, well maybe I will just keep him home another year with me then let him grow up! Guess I cant stop that...

Well Today is Friday and we have the day off... its a lazy day. We are going to enjoy the sun and just relax, maybe cruz down to the beach for a while....since our beach is not a vertical walk !!!

Im Praying for a Friend of Mine, Melissa..that she can be off a medication soon, and that a scan comes back good, For a little boy Pablo to be pain free and for his family to be filled with grace and strength in this time of trial, for my fears, my confusion, my insurance, my claim, For Cory may his new doctor be guided to the right decision.

I am Thankful for, Pokeys Father, my house, my Wiley, that my car has not died yet, for yet another sunny day, a PCP that listens, my change jar and coupons (thats what paid for the groceries last night folks!) my grandparents,

I am hopeful for tomorrow, for some solitude, for my claim, for Jonah, for Stellan, for Noah ( Im praying for them as well but hopeful because they are doing well right now), for a blessing in disguise.

Gumby / Mommy Zebra