Warm Weather, Talking to Girls and Keeping Himself Busy

 Things are going pretty good around here for the  most part. I have been batting an ear/jaw issues for two months now and soon will undergo some oral surgery which I am not looking forward to. Sebastian's allergies arrived right on time, as usual. Poor little guy is a nasty little mess but other than being lethargic he is doing decent with it all, even learning to wipe his nose ( on something other than me !) and starting to figure out how to blow his nose.

As with most of his life we have troubles with Sebastian and bedtime, he will be so exhausted he is almost asleep sitting up but as soon as we start to get him ready for bed he acts as if he just popped some speed or something  ! We have an evening routine but that seems to matter little , even tried to kind of "trick" him and not stick to the schedule, thinking that maybe it was time for a revamp - didn't matter.... *sigh* We try to get him into bed anywhere between 7-9 pm , depending on the day , usually ended up in bed about 8 pm most of the time.  We try laying with him , not laying with him , pretty much all the tricks in the book but still midnight finds me still battling him ( or just "ignoring" him) - it is SO frustrating !! I would think after 4 years this would have improved.. lol.

  Apparently , also with age 4 comes the attitude, lol. In all honesty he isn't too bad , especially compared to some of the kids I see in stores , but the behavior is also frustrating ! It isn't like he is throwing himself on the ground kicking and screaming - even if he did I would understand considering the problems he has been having with communications . It is more just like super annoying things like yelling or this weird raspberry/spitting thing that just drives me up the wall !

Time outs work pretty well but I feel bad for the kid, if we stuck him in time out EVERYTIME he did something we told him not to he would probably be living in there . One day I decided to really crack down on it and put him in time out for every offence - it was just too much for both of us and did nothing but perpetuate the problems so we moved on to a pick your battle stance. I must say I am really proud of his progress though , he has went from yelling from the time he woke up till he went to bed to just doing every so often -usually in the most inopportune moments and places of course, lol.

The warm weather has finally arrived here and Sebastian is so happy to get back outdoors to play... As usual he is excited to get out the soccer nets, bubbles , baseball tee and golf set ! As I write he is bouncing around the room watching PGA Golf and playing along with his own little plastic golf set - I feel like I need to be wearing a protective  layer - or three !

 During this battling with my ear/jaw thing Sebastian has been spending a lot of time in the DR office and for once it is not for him. The other day the DR went to look in my ears and Sebastian informed them that my ears hurt because I had porcupines in them... My kid has a future in medicine ... or comedy ....  Also he has made HUGE progress in learning to keep himself entertained for more than a few minutes at a time , admittedly I will sometimes have to help him and get him interested in something but he sticks with it for quite awhile. This has come as a huge relief to me , he use to have to be CONTSTANTLY entertained or he would just spin out of control which was no fun for anyone. Glad this milestone came at this time :o)

The other day while waiting to go back at the ENT we were sitting in the kid's playroom , Sebastian and daddy playing with a soft ball we carry in his play bag when this little girl came in with her dad. I would guess she was around 7 or so , cute thing with long brown hair and a great giggle and smile. Sebastian , being the life of the party as always , walks right up and says " She wants to play soccer" and almost has a completely normal social interaction with her ! He was somewhat awkward and said some things that were off but she just giggled ,and they had fun playing throwing the ball together.  I got called back but DH said the two played ball until she and her dad got called back then Sebastian lost it and cried his eyes out cause she had to leave. it may seem like such a little thing to some people but one typical social interaction is HUGE for Sebastian  and we are SO proud of him !

Hope everyone has a Happy Easter !!

Bronch findings ...

    Sebastian's bronch went great , despite a bumpy start.  We were hour and a half late getting into the OR which made Sebastian grumpy and  thanks to some irresponsible adults NOT READING THE FRICKIN' NO EATTING OR DRINKING SIGN in the waiting room he was already begging for food and something to drink as it was. Then add the total of three hours wait of getting into the OR - let's just say that was less than pleasant for everyone involved...

  The next bump on the road has really irritated me since the moment it happened. Sebastian is on Xopenx (prn) and Pulmicort (x1) but he hadn't needed it (Xopenx) that morning so of course we didn't give it to him. Hospital policy says more or less that he needed to take it before the bronch since they will be irritating his airway - okay , I have no problems with that . Well, we wait forever, meet up with all the nurses, Dr.F, anesthesiologist etc all the while no treatment, they come to get him and they ask if he has had his Xopenx yet, I let them know we are still waiting on it . Well, we get the treatment going and everyone and their mother is standing around chatting and waiting for the treatment to be done and I hear someone say " yeah he is taking his Albuterol right now"  ALBUTEROL !?! Sebastian was taken off of Albuterol because he makes his tracheomalacia  worse as well as making him highly agitated. I ask them if that was Albuterol in his neb cup , and the nurse tells me it was so I quickly pull the mask off and tell them he isn't suppose to have Albuterol. 

  Someone then tries to pull a cover their rear maneuver by saying " Oh, it is pretty much the same thing  , we switch it sometimes...  blah , blah blah." The nurse who gave him the Albuterol says " Well, we will have to wait , I will have to call down to the Pharmacy" I am not sure what she was expecting as a response but I just looked her in the eye and let her know that is just fine by me. She wanders off and one the nurses standing around asks if he is allergic to Albuterol , I explain the situation and point out it is written out on the papers in front of all of them . Then the nurse who original nurse returns and looks over the paperwork and says " Oh, yeah , it says it right there" ... Yup, dealing with a genius there.... You can't just give someone a med they don't take  ! GAH !

  I am very grateful for that little conversation because, if not for that he would have had an Albuterol treatment and very well could have come back out of the OR with a trach because the dr thinking his tracheomalacia was *that* bad.

 The actual results were great though , his airway looks beautiful, pink, open and granuloma free !!! The is a little tracheomalacia showing ( could that jave been the partial Albuterol treatment ?? ) but nothing major to worry about at this time.

  He came out of recovery away , calm and wanting to snuggle, ate a red slushy and we were out of there !! Despite being irritable plain out cranky he stayed awake for the rest of the day much to our surprise.

 Today he got up and was running about running at a million miles an hour as if nothing ever happened ... go figure , lol !

Bronch Tomorrow

 Sebastian has his 14th or that 15th bronch tomorrow, mostly to just check on the work they did in September. He was suppose to get in a month after the surgery but in true Sebastian fashion it was a continuous illnesses one after the other , nothing serious really, just snotty kid nose type stuff. Since there have been no obvious signs of problems ( lows sats, retractions, etc) I am expecting a quick in and out trip to the OR.

For the last month or two Sebastian has been totally fascinated with zombies, more specifically , the game Plants vs. Zombies. He now runs around quoting the zombies , nothing like having the 4 year old sleeping next to you whisper " The zombies are coming" at 2:30 in the morning , or waking up to said 4 year old growling " brains !" next to your face - a bit unnerving really .....

                                

  Sebastian is on a serious music kick as well lately, at any moment he is prone start singing loudly and wonderful off key to any of his favorites.

         His favorites would include and in no particular order :

• Pink
• Do-Re-Mi ( from Sound of Music)
• Rockin' Robin by Jackson 5
• The Fray
• All American Rejects
• Plain White Tee's
• Katy Perry
• Shinedown
• KT Tunstall
• Venga Boys
• All Star by Smashmouth
• Love Shack by The B-52's
• pretty much anything that plays multiple times on the radio... lol

  Today I caught him dancing around to a flash mob doing " Single Ladies" by Beyonce on YouTube ... lol... how I wish I had a video camera for that one !!

  Well, time to sign off of here and get ready for tomorrow ... what a fun fill day that is going to be - our first bronch without the trach. Should be interesting to say the least.....

                                                

          

Long Time No Post

I realized the other day just how long it had been since I had posted an entry - I suck ... sorry :o)

There is a reason why I haven't been blogging much - here is a picture from his 4th b-day party- see if you an figure it out...

Notice something missing ? Something white, with a bright red cap on it , say, oh , I dunno , dangling from his neck ?? Yep , he was decannulated ( no more trach) on 9-9-09 and we have been busy ever since ! We have 3 1/2 years of experiences to catch up on !! The surgery itself was so much less than we thought it would have to be ! The malformation I have mentioned in the previous post was were two of the cartilage rings in his trachea had be messed up from the pressure of the trach over time.

In the example above you can see the trach tube is entered in the 3rd and 4th rings of the trachea in Sebastian case, over time, the tube broke parts of numbers 5 and 6 away , causing a 60-70 % occlusion of his airway. Dr.F and company were able to just sew the pieces back in place , opening up his airway and was able to remove his trach ! No graft, no vent , no significant hospital stay !

This being said I now look back in amazement that he was able to breath through such a tiny opening ! With his trach being capped he was breathing through his nose and mouth , it would be like trying to breath through a straw . ( BTW, give that a shot ! Not so much fun) Yet , he would run and play as hard as he could .

Now with the trach out he is Mr.Go-Go-Go !!! From the time he wakes up until he falls asleep , or should I say crashes in an exhausted heap - Sebastian is on the move ! Dancing, running, rolling around , jumping , you name it kid is doing it !

Before the dressing was even off he was playing with chalk on the sidewalk.. didn't really get it but loved when I wrote letters on the ground that he could walk on . Within 2 weeks he was splashing around the shallow end of a pool for the first time over and by 4 weeks he was seriously playing in the water , without a fear in the world !

Since Sebastian, Jamie (DH) and I all have birthdays within 11 days of each other ( Bas- Jan 24th , mine - Jan 26th and Jamie -Feb 11th) I decided we should go to FL and within 72 hours we were on the plane heading there ! Last year Jamie and I both turned 30 but with my mom's passing we didn't feel up to doing anything special for the occasion, of course. I had always planned to celebrate turning thirty and entering that new phase of my life - so this year I got to celebrate my 30th (w/ one year experience) birthday on the beach.

It was a first for both Sebastian and I , walking the on the beach and seeing the ocean and it was kind of neat to do it together :o)

Since this has gotten so long , I will call it quits for now and add some more of our FL birthday adventure later.

Surgery and Glasses, Not Necessarily in That Order

Around 8 this morning Sebastian has a bronch and surgery. He bronch showed that his trach has caused a malformation in the trachea , not uncommon , so he will need another surgery next month to fix that. To make a long story short Dr.F, along with a colleague will go in and attempt to remove said malformation, if everything stays where it is suppose to ( his airway not collapsing in on itself) then they will remove the trach and we will see how things go. If his airway *does* collapse , which everyone agrees in most likely the case, then they will remove a bit of rib cartilage and use it as a stint, close up the stoma and he will be vented for 3 days to recover. The part I am dreading the most is seeing him vented again....

Also , during this procedure his tonsils and adnoids were removed so he is not a happy camper right now. Over all though he is doing well, as I write he is playing the Wii and sporting a chocolate pudding mustache and goatee, the whole eating pudding and other assorted goodies (ie junk food city !) is going over great .

Recently Sebastian has acquired glasses, he is awesome with them. Roughly two weeks ago we went to a new eye Dr who , after one visit, decided to put him in glasses. Apparently his right eye is*so* bad that it is essentially turning off the distorted impulses to his brain. Good thing is that is fixable with glasses and ... ready for this... 4 hours of patching is left eye everyday... to strengthen his eye. Hopefully this will work over time and we can avoid yet another surgery .

On the good news front Sebastian has been accepted for a wish through Make-A-Wish and we will be heading to Disney later this year ! We are all so excited.

Lastly , awhile back Sebastian was accepted for a Littlest Heros photo shoot and last week we finally were able to get together to do them - talk about worth the wait !! Not only are the preview pix fantastic the photographer was brilliant with him ! I *HIGHLY* recommend her to anyone interested in getting some picture done !http://karaguffeyphotography.com/blog/2009/07/19/little-hero/

Trip to the Zoo

Spent the day yesterday at the Zoo with Sebastian's best friend John and his mom. Despite the drizzle and two worn out momma we had a good time. As usual , when the weather is less then perfect the Zoo is pretty much empty. Something amazing happened there, the boys played on a playground set while the momma's sat on a bench , snacked and talked !!! Now this may be an everyday occurrence to some people but when you have two special needs kids who require nearly constant assistance of some sort this is a wonderful moment. We watched in amazement (and some moments sheer terror) as our boys climbed up little ladders and slid down slides on their own .

I am particularly proud of John climbing up the little three rung ladder behind Sebastian , it was the first time and despite the urge to lunge across the playground and pull him to safety of solid ground his momma just quietly walked nearby him in case he slipped or needed help , all without him ever seeing her.

At the Zoo we managed sit within touching distance of an amazing Bengal tiger who constant lip licking kept us in check of where we sat on the food chain... thank goodness for that insanely thick glass between us.

I love when there are nice, cool days and we can spend most of the day outdoors, Sebastian needs to run and go-go-go so much that he just goes slightly bonkers when he is cooped up , of course who doesn't ?

Steroids are DONE and my boy is back !!

Finally , finally , finally got my son back !! The steroids are totally out of his system and Sebastian is back to his normal happy go lucky self !! I am so grateful, I missed him so much , it was almost as if I had a totally different child while he was one the steroids, you can tell he is relieved to be off of them too.

We have been busy around here lately, back tracking just a bit , we have been to Thunder Over Louisville, Pegasus Parade Preview, The Zoo a few times ,saw Everclear and Gavin DeGraw in concert and not too mention visited a ton of parks.

Sebastian did surprisingly well at Thunder, I thought he may be scared of the fireworks , he just named the colors and informed me they " Go boom" and "They sparkle". He spent the entire 30 mintues in my arms and wrapped in his blanket but otherwise didn't seem all that phased. He did get a bit irked when they played a snippet of his favorite Jason Mraz song "I'm Yours" ( Yeah the one that is played a million times a day everywhere you go !) and then went into another song, he wanted to hear the whole thing.

At the Pegasus Parade Preview Sebastian wore a plastic pith helmet ( he usually loathes hats) around while visiting all the floats and balloons then ended his evening dancing for about 30 minutes straight to a dance groups music while they performed, totally upstaging them !

We have hit quite a few local parks since the weather has been nice , suddenly Sebastian LOVES to swing . He will swing as long as you will push him , after the 45 minute gig I did last week I realized it is time to really work on teaching him to swing himself, phew !

Headed to the Waterfront for a concert which is poured down rain the first 20 minutes of , we hid under neither the overpass with all the sane people until it stopped then joined all the happy , rain soaked people to enjoy the concert a bit closer. After Everclear played we were lucky enough to get to meet them and get autographs from everyone. Once we were done meeting them we watched a few moments of Gavin DeGraw , who I have to admit sounds pretty dang good live ! I have heard him on the radio and always thought his stuff was okay , a pleasant background filler , if you will , but live I actually enjoyed it.

Yesterday we spent most of the day at the Zoo watching all the animals, including Sebastian's current favorite , the lemurs, lol.

Last week we *FINALLY* got the paper work back from the local school district making official what we already knew ... Sebastian has mild autism. I am excited now we have a "name" for it so we can go about looking into local services to help us deal with it . We are fortunate because unlike many dealing with autism , Sebastian's symptoms are not major . Infact, many people just meeting him would just pass him off as a silly or odd child and most people are perplexed Sebastian would be considered to have autism. Now we will head to some local places for more in depth studies , I am thinking in the end we will end up with an Asperger's label as well. We are okay with all it though , like I said , in our case , we are blessed in the fact it is only mild and I honestly feel that with services Sebastian will be able to have a totally "normal" productive life.