Guess I need to update now that school is out and Sammy is at his summer program at the moment.

The summer program is another story..we'll see if he's staying in it...there is just too much noise with the autistic boys that are in the classroom and Sammy is stressing..not good. I have requested he be transferred to the other teacher. Waiting on an answer.

So thank God school is done... spending time with my loves and hitting my sister's pool a lot. :) My niece and her family are here from AZ for a week. The girls are getting so big!

Gearing up for the 5,000 appts. we have coming up for Sammy...we got an appt. at a local hospital to get his phenol injections and more Botox done under anesthesia on Aug. 9. I can't wait...his adductors are getting way too tight.

We had a great 4th of July...went to Brian's parents and then to my sister's for dinner and fireworks. My bro did them, they were great! Sammy loved the sparklers! :)

www.youtube.com/watch?v=sYPQhrJ6nd8

www.youtube.com/watch?v=-v47v-TL2Ak&NR=1

Sammy smarty pants! :)

check out the link of my smarty boy! :)

http://www.youtube.com/watch?v=22yWecuh2LY

My life is flashing before my eyes!

...my first "baby" is now on his way to high school! Wahhh! I'm officially old! ;)

And my second baby has now also lost both top teeth... ugh... it's all happening too fast!

cootie update...

So after my last post I thought that Sammy was all ready to go back for his half day on Friday. I get a phone call from his teacher 5 minutes before I leave my school and she says he has a fever. So I rush home and meet him off the bus with my fil and he feels perfectly cool and his underarm temp. is 97.7! Wth? Don't know what that was about, but he was a little off all weekend and felt off temp.-wise, so I kept him home one more day today. I'm just done worrying about everybody..got nothing left to give, it feels at times... praying this is it for a good long while.... come on pool and sunshine and warmth, I'm ready for ya! :)

Ok, people....I am SOOOO done with these cooties!

We are FINALLY after what, 4 weeks, coming out the other side of cootieville in my house...starting toward the end of April with Sammy and the ear infection and then 2 weeks later the virus and hospital stay and then last week to Luke getting a cold and HORRIBLE cough that is STILL sticking around 11 days later...and then Brian and I got the cold not as bad and now Sammy has the cold and a little cough. Love Zicam, I think that's why Sammy and I didn't get it very badly. So Sammy was out yesterday and today but is actually acting ok and slept through last night! Thank God! I also wonder if his 6 yr. molars coming in are painful at all... They seem so darn big! He will be going back to school tomorrow, they have a half day because of faculty PD. Can't wait to have a weekend with everyone semi-well! Fingers crossed that we have served our sentences! :)

So there's buzz at my school of assignment changes...as in I may be moved again to a much lower grade, depending on position changes... I am NOT happy about this AT ALL! I am going to play the lottery twice a week ALL summer and pray that I can just quit my job and volunteer with Sammy all day everyday! (I was at his school last Fri. after a field trip and he ate like a champ for me there!) Love my job, but can't take anymore of the power trip bs that continues to pervade! :(

Oh well, either way, 5 more weeks of school for this year and I can take the whole summer to attempt to wind down! :)

Sammy

So I guess I should update on what's been going on with us lately.... The Tuesday of vacation, 4/19, Sammy came down with a temp. and into Wed. He seemed ok Thursday and then woke up Friday morning with diarrhea and vomiting once. So by Saturday evening he seemed to be perking up and taking some fluids but was up all night Sunday upset and ended up vomiting again Sunday morning. So we called the doc and went to the ER with him. Happy Easter, hah? He was so dehydrated and limp it was scary. So they hydrated him with an IV and sent us home with the well still in, just in case. We had a follow-up with the ped. Monday morning and he felt he was still dehydrated so he admitted us to the hospital. We stayed Monday night and then again Tuesday night to get the IV fluids and he was acting better by Wednesday so they let us go home. he started eating again and now I am just struggling with him to take the bottle again...I sat with him for half an hour twice yesterday until he drank some of the bottle... he can't eat popsicles all day forever! So he is back to school... acting fine, just tiring a little easier and skinnier from the incident, and has us once again considering the g tube, but it's nice to see him smiling again! :) Don't ever want to go through that again.... Now Luke has a cold, so we'll see if we can bypass anybody else catching that from him... Sammy can't afford to catch something again, poor little guy... so Clorox wipes and sanitizer galore! Summer vacation, please come quickly!!!!!!!!!!

bottle time!

Yay! So Sammy took his bottle after school on Monday! :) I am so insanely happy! He also took another one at bedtime and again yesterday twice! He also drank a half of one this morning for breakfast, which he never does. Such a little thing that can make such a big difference! That's my boy! (must have been the ear infection)

sickies,sickies,sickies...

So Sammy is still fighting the cold. I figured it would be as long as I had it... the cough isn't too bad, just mostly in the morning... but he is refusing to drink his bottle...big issue! We are trying to up the eaten liquids and give him pops and he loves the McDonald's frappes, too. So we are hoping he goes back to the bottle since the cup is not an efficient or successful way for him to drink. I realize he probably had to give it up eventually but I'm not ready! :( So that is a stress for us now...

He went back to school today and I haven't heard anything else yet, so we'll see how he did...trying a new Tupperware sippy cup at school today..hopefully it will be the successful thing we have been looking for! :)

And so it goes....

I suppose I should post at least one more time before March is gone! (Thank God, by the way!) ;)

I always hate March, it's such a long work month with no long weekends or vacations. (I know...I shouldn't complain! Most people don't get as much time off as I do) :)

However, not much to report other than the cold that is currently torturing us! Luke and I started to get this at the beginning of last week, and Luke got over it in 2 days! Needless to say, I am STILL fighting with it and now Sammy is sick too. Poor guy, I stayed home with him yesterday and he didn't seem too bad. This morning he woke up with a nasty dry seal bark of a cough. :( So we are nebulizing away and hoping that this passes without incident. We have been SO healthy and lucky this winter with hardly any illness at all...actually none... that I guess I can't complain that we have this one cold....My father in law is watching Sammy for us today as I have state testing with my kids today and Brian has an inspection at work...the rigors of being the boss! ;)

Looking forward to April vacation...my sister is coming again that week because her big 4-0 is that week! Can't wait! We have some fun girly stuff planned with the sisters. (for me, sans kids) :)

Just gotta get through the next 2 1/2 weeks! ;)

On a side note, March was National CP Awareness Month... gotta love my brave, strong, beautiful boy who is making me more proud by the moment! And love to Luke, who is the best big brother that a CP kid could ask for! :)

Student of the Month

So Sammy's principal nominated him to be the student of the month for his whole school for the month of March! Yah, Sammy! :) She wrote a very cool letter for him...very sweet! I even got a window cling for my car! LOL

I have pics I will post later at home...he had a whole school assembly to celebrate..everybody clapped and later everybody in the hall was giving him high fives! :) Awesome! :)

He was so proud of himself as so were we! (And Luke was chosen for his school back in December!) Those are my boys!!!! :)

YAH!!!!!!!!!!!!!! :)

So.......... YAH!!!!!!!!! :) Gotta share.... I emailed Sammy's teacher this morning to suggest him being included in a regular ed. kindergarten class for reading. (Mostly because I found out last week that he is doing a horrifically boring special ed reading program supplemented with a program that requires gross motor hand tapping that the 1:1 isn't even doing with Sammy. When I asked what he is doing @ that time, i was told, "Well, he's watching the other kids and seeing them do it!" WHAT?!!) Anywho.... the teacher I requested he be in with is best friends with my sister and loves Sammy, so she is going to include him in her class for Reading and she is super excited about it! I can't wait! I am thanking God for making someone so special in Sammy's life! :) I am so happy that he will be in with kids modeling appropriate behavior and being challenged with his reading skills!

Yah! :)

oh man, I'm such a slacker... ;)

Yeah, yeah...I'm a slacker.... So just a quick update...

We had a blast at our annual Oscars party on Sunday at my sister's house...ragging on the outfits and making fun of the horrible speeches while eating lots of great junk food, what could be more fun??? ;)

My boy went to Florida with my sisters and brother-in-law again this past school vacation week. He had a blast...coming from 20 degrees here in Massachusetts, he was really enjoying the 82 degree weather and the non-stop fishing in the canal behind the house and on the boat. He caught some cool fish... :) I missed him but I am glad he gets to have the opportunity to get away with his aunts and uncle! They spoil him way too much! :) Isn't he all grown up now?? Makes me want to cry! My "baby" is starting high school next year! :(
Sammy and I spent the week playing and having therapy sessions and just sleeping later in the mornings! Didn't get to fatten him up much, he wasn't into eating much over vacay for some reason, but now that he's back to school , and still not eating well for them, he's ravenous when he comes home and I'm able to get a lot into him at a time... getting nervous that he looks like a Beafran (sp?) child with the ribs sticking out and all... poor kid... he's happy to be back at school, though... although he doesn't get up well in the morning even if he goes to bed on time... i think he got that from me! ;)

So, we also went to Shriners in Feb. again and are getting Sammy an Easy Stander (it's a hydraulic stander that he can sit in and it stands him up a bit at a time) and a wheeling toilet seat that goes over the toilet we have so he can start being more like a 6 yo. He is very excited about it, as we are. He can go on command and is starting to be dry some nights, so even though he can't tell us he has to go, we can put him on at times during the day to make him more independent. Shriners is so awesome, they don't question us, they just ask how they can help.... it was nice to be able to vent about his school feeding issues and other struggles with the OT there...she must have sat with us for like 40 minutes and just listened to us and gave us suggestions to try and things to say to the people at school. SHRINERS ROCKS!! Please support them when you can! :)

happy birthday to Sammy! :)

Happy birthday to my littlest man on February 4th! :) The big 'ol 6! He had a great party with the family and was too blessed with many presents and well wishes! Attaching a few pics...

MVI_3025

Sammy using his new toy... blew me away from not only knowing his letters but by using his hand like a champ! Yippee! That's my boy! :)

This is Sam's new "bridge" walkway for his wheelchair...yeah, it's over the top like all of Brian's projects..just look at the garage it's attached to! :)

Time for another update I guess.. sorry I only seem to update when things go wrong around here... ugh...

So we went last Tuesday to what I thought was going to be a normal 5 minute recheck appt. @ the neuro's in Springfield and ended up having him tell us that Sam's last renal u/s (months ago, btw) showed 3 possible kidney stones from his seizure meds. (Thanks for calling us and telling us before now!) :( Anywho, he sent us right over that day to a nephrologist that gave him another renal u/s and said only his left kidney looked like it had something suspicious in it. The neuro had me freaked out that we were going to have to take Sam off of the Zonegran that has been a miracle drug for Sam's seizures. The nephrologist's opinion was to keep him on the meds and add Potassium Citrate to help prevent any more stones. Want to know why nobody had him take that to begin with 4 years ago???? HELLO!!! Anyway, so we have to be careful because he is sensitive to the potassium and it seems to bother his stomach if has too much. We have a CAT scan scheduled for this Friday @ 5:30 to see for sure what's in the kidneys. We'll see if Sam cooperates and stays still for it!

We had a fabulous holiday..will add some pics..my sis came from Reno for 8 days and we had a great visit. My brother and sis-in-law came from Indy too which was nice to see them again. Had a "sleepover" @ my sister's house for New Year's Eve (with the kids) , us crazy people, but had lots of fun! :)

including a pic of Sam on the Flexible Flyer sled that Brian adapted for his feeder seat..as you can see, he loves it! :)

The day after Christmas I backed my car into a mailbox @ my ex-husband's apartment (totally in my blind spot--apparently I need to make more money so I can afford a back-up camera!) So my car has been in the shop since last Monday--I'm dying without my car! :( Hopefully it will be ready tomorrow--FINALLY!

Well, that's the latest.... i will try to update this weekend on the CAT scan results...