Big boy chairs and first snowflakes of the season

Sorry it took me a few days to update about Sebastian , I got out of the hospital a couple days ago , I am on the mend , thyroid went all wonky and exhaustion - fun times ! :o)

Last night Sebastian had a asthma attack around three, first ugly one in awhile, some albuterol, a bottle and some snuggles and he was feeling better , but laid in bed for the next two hours or more wide awake. He seems to be feeling okay, still a lot of the same.

Today we went for walk at the Mall and had lunch at the food court where Sebastian , behaving so well , sat in a regular chair and ate his entire lunch with no problems ! Also at the mall we took at gander at the big man in the red velvet suit since he wasn't busy and the kid took it all in stride. Sure, we didn't cross the velvet ropes but I am taking a smile and a wave as a positive sign towards a good Santa photo this year.

We stopped by the store to pick up a couple of items and came out into a winter wonderland !! It was incredible...and incredibly cold and windy !!! But still lovely, lol. It is a pity it was so windy because Sebastian thought the snow falling was great fun !

New shoes and SMOs views

After just two stores we managed to find a pair of shoes that would work with Sebastian's SMOs ! At one store I think we pretty much went through every type of boy shoes they had on the shelf, of course that means about 15 styles vs the girls 35 or so .... No luck there so we headed over to the second place where the search consisted of three adults going over every style and me wedging pair after pair over Sebastian's SMOs, which the kid tolerated great !

One style was a extra wide white K-Swiss which once he had them on looked as if he as stomping around wearing a pair of a marshmallows on his feet. They were so ugly , square and bulky it just bummed me out so bad. Luckily the search finally yielded a nice brown pair that don't resemble any snack food products.

Later he wore his SMOs around for the first time and the difference is amazing ! His legs move so smoothly and he doesn't look like Frankenstein trying to walk. Once we removed the SMOs we looked over his feet and there was only one little red area on the top of his right foot that faded in less that five minutes so we know the fit is good and he won't likely need adjustments.

Over all a pretty successful day.

This evening as Sebastian's grandma was helping him get ready for bed she reported some funky yellow gunkys in the trach and his nose is running some, but so far it is clear. I am hoping it just some yuck and nothing indicating an illness brewing ... I just want to make it through the holidays and his birthday healthy.

Sebastian's word of the day is .... Panini !! Don't ask me why and we guess he picked up from the Hot Pockets commercial about their new Panini bread whatevers, lol. All day today he ran around calling all of us paninis and laughing his little head off when we called him one. He's kinda odd but I think we will keep him anyways... lol.

Eating and weight loss of minor proportions

I have written about Sebastian's problem with over stuffing his mouth as he eats , well I am happy to say that he has progressed quite impressively within the last few weeks. Yesterday I was even able to allow him to feed himself two entire cereal bars without having to intervene ! It has even been a repeat performance , much to our delight ! In the past he would have simply shoved half the cereal bar in his mouth , it was nice to watch him to take safe size bites without worrying about having him choking himself.

During Sebastian's week long bout with the dreaded stomach bug he lost weight , just a few pounds that probably no one notices but us. Mostly around his face and for the first time in a long time his little ribs are poking out, lol. Comically enough we went to an appointment were he was weighed and measured, he is in the 90% in height and 95% in weight which ,we were told , would usually earn us a discussion on him being overweight followed up with pamphlets and that whole deal, lol. The nutritionist was the same one who had been seeing Sebastian since he started the program just laughed it off and chalked it up to muscle mass since the kid is VERY obviously not overweight. We all got a good chuckle over the once scrawny , too small for his own skin baby being an "overweight" toddler with next to no fat on his body.

All better

As you can see Sebastian is up and about once again. The last two days have been very busy and fun filled for the little guy. On Thursdays we went to a inflatable play place (gotta love $5 play days !) and followed that up with a trip to the zoo where it felt as if we were the only ones there.

At the play place Sebastian did a very grand thing , he climbed up the ladder of a huge inflatable slide , repeatedly on his own !! This requires a LOT of upper body strength, motor planning and just plain gusto to go the distance. We are so tickled and proud of him !!


(daddy showing him how for the first time)








It was so much fun to be able to let Sebastian roam the zoo where he wanted with no worries, we hung around with the gorillas and monkeys for well over an hour then caught two of the tiger feedings. The tiger feeding sessions are a new thing at our local zoo , at the recently renovated tiger cage they have a roll up steel door where they then feed the cat though a chain link fence and answer any questions you may have. It is pretty impressive to see them up close and frightening when you hear those massive jaws chopping and smacking on the meat !!
Sebastian really enjoyed watching Sasha (the tiger) eat, growling at her and telling her she did a " Good Job" when she stood up to retrieve her treat from the stick, causing all the handlers to laugh.



The gorilla area, an amazing spread that gives multiple outdoor and indoor areas for the gorillas to run amok in, is usually standing room only but being a wee bit cool , as in long sleeves not even a jacket cool, was empty. During the entire time we were there we only saw three other families pass through. We followed the gorillas back and forth as they went outside and came back in , after awhile I began to think they were just messing with us silly humans staring at them.

Today at therapy Sebastian tried to hard to jump up off the ground but it is still just not happening yet, even on his beloved trampoline. I am impressed by his determination though , I think it will click for him soon.

We're baaaaaaaaaaaaaaaack ......

Sorry I have been away so long - it has been a crazy few weeks or so chock full of appointments,playgroups,therapists, a freak windstorm and illnesses but not necessarily in that order ....

Here is a quick rundown :

We met with an orthopedist to get Sebastian measured,then followed up with a fitting and are now owners of a pair vehicle and flag covered SMOs. The SMO , short for supramalleolar orthotic are more or less a braces for his feet to help with his low tone issues I have touched on before and while a bit more than we had originally thought necessary will still allow him to wear everyday shoes and have pretty much normal range of motion in his feet ankle. (http://surestep.net/about.html)

September 14th our area was mauled by Hurricane Ike leftovers (http://www.whas11.com/video/?z=y&nvid=286587) which knocked out the power to like 80% of the area or something utterly insane like that. Some of our neighborhoods were out for over a week, which left people like Sebastian and other members of our family who are dependent on electricity to live in a very vulnerable spot. We had one family memeber end up in the hospital after a night in a hotel and another two spending time in an unpowered apartment.
We were lucky in that our power came back on the following evening. We spent the first day calling every public assistance place we could think of Red Cross, Salvation Army etc for help to no avail. Through luck we found a bed and plug for Sebastian's machines for the first night but the second day was again filled with a panic of calls to every hotel, motel and public assistance place we could think. As we were heading to a part of our city I had never even heard of to a place I prayed would work out our neighbor called and said our power was back on. The streets on either side of us didn't have power for at least 4-5 day more. Keep in mind this lovely little windstorm also occurred during the Rider Cup so a large section of the city's hotel rooms were booked prior. To quote an old friend of mine 'Fun Times' !!!

Sebastian had another round of the MRSA/pseudo crud combo that put him in the hospital last time but his pulmnologist was on board with me and quickly started him oral/inhaled antibiotic regimen which lo and behold seemed to kill it out.

We have finally met with an Occupation Therapist which was a bear to get scheduled, lol and have a bit more insight on the kiddo. Mostly making official things we already knew or suspected and gave some us some suggestions on how to go about helping him over come some of it.

Halloween came and went... Sebastian was a vampire for the third year in a row... it is one of the few costumes that do not require a mask, wig, fur or makeup to look good. This year Sebastian did warm up to the make-up thing after I fought a few kitty whiskers on his face and handed him a mirror a few weeks before Halloween at a local parade. By the week before Halloween he was randomly sporting whiskers,vampire fangs , goatees and mustaches at times. He was even asking me for whiskers today... lol.

With Sebastian third ( yup, you read that right ...THRID) birthday creeping up in January it seems like we have half a dozen deadline and an endless stream of paper work to sift through and sign. Some of it makes me laugh , such as the section where it asks for Drs, therapist or specialists who has worked with child within the past 12 months and gives me three spaces.... Sebastian has eight or nine people to file under that - complete with addresses, phone numbers and the maiden name of their next door neighbor's pet groomer...... Then there is the questions that ask me to explain why Sebastian is unlike his peers ... hmmm... let me count the ways....
(Too bad they don't ask how he is like his peers , that is were the wow factor really kicks in , in my humble opinion :oD )

Currently Sebastian is sick with some funky stomach bug or another that he has been fighting since late PM Wednesday. Poor guy is unable to keep much of anything down or anything in, which as lead to seven wardrobe changes in one day , I am starting to feel I am working backstage at a Vegas show. He has perked up some over the last two days , even eating a banana , some applesauce and a handful of crackers within the last 24 hrs. He has been pounding back the Pedilite so he is keeping hydrated , at we aren't having to worry about that , lol.

I guess that is enough for now , lol. Thanks for all the notes and emails for concern , sorry for worry you guys but it is nice to know so many people care. :o)