Prepairing for Another Week of School

     Here we are late Sunday , getting ready for our first full week of school and this weekend all I have heard is about Sebastian wanting to go back.
  DH and I still can't get over the difference in his behavior in just three days ! Today he has started to have a little trouble listening to us but considering he woke up so early today I am not too surprised by that fact. 

   We have a ECE meeting scheduled for Tuesday and I am so worried that they are going to want to remove him from his class... maybe he needs additional assistance ( okay , so we know he will need SOME regardless) but I hopefully I can explain to them clearly enough how much he is gaining in there daily. I am attempting to fade more and more into the background in the classroom so he is forced to become more independent - doesn't seem to be an issue. He is more concerned with the other kids and the teachers than he is with me... lol.  

  Well, I am getting tired and I have a busy day of Kindergarten ahead tomorrow so I better get to bed ...Try to write more tomorrow !
 Night all   ;)

First Day of School !

 Okay , here is folks, the post people have been asking me about since I walked in the door this afternoon :)

 Sebastian had a really nice day at school today. I ended up staying in the classroom to help out where I could and was pleasantly surprised by how smoothly everything went. I think he was a little nervous, but     heck , who ISN'T on the first day of school ! He did pretty good on listening to his teachers and was SO excited when they sang "Wheels on the Bus" 

   A few comments were made by other kids about him wearing a pull-up,some serious stares at his stoma and a few little boys cornered him and tried to take his glasses so it seems we are going to have to work on standing up for ourselves. On the upside to that all Sebastian was so into all the new stuff going on around him I don't think he really paid much attention to those incidents. It just makes me sad though , he has fought so hard to get where he is and to have other kids make fun of where is he lacking ....  :/   I know they don't know his history of course but still the momma bear in me wanted to growl but instead I just told the kids to keep their hands to themselves and to be kind. 

    One wonderfully funny thing did happen, a little boy was going around to the kids kind of chest bumping without touching , trying to intimidate them and make them flinch. He tried with Sebastian three or four times , Sebastian just looked at him like he was nuts then proceeded to scream at him with an ear piercing scream then wander off to play on the playground again -- this time The Intimidator flinched and took off . Is it wrong to be proud of that ? ;)

Sebastian LOVED the playground and was heartbroken when it was time to go back to class. I can not say enough nice things about his teachers Mrs.F and Mrs.K and their openness to this crazy little situation !  I am SO looking forward to what this year will bring for Sebastian  

Boooo !

   Due to a small but mighty storm that blew through the area last Saturday large sections of the city lost power- including us. We went without power for 3 days but not going to complain too much , the weather was nice and Sebastian seemed to have fun playing with a flashlight. 

   Another bummer is school has been canceled for both Monday and Tuesday due to all the power outages, phone lines out and roadways blocked. Sebastian is looking forward to it but I am glad they aren't risking kids' safety - and the parents' sanity !  We were sitting around talking about it and got laughing over the fact the kids have already incurred two "snow days" to make up at the end of the year yet they haven't even gotten on the buses yet.

Missing Teeth and Starting School

 So , it has been awhile since I have written but at least this time it wasn't a year ... an improvement I believe :D 

  Things have been going good around here , busy with some major life changes ( that is a whole other post ) but overall good. 

  One July 7th Sebastian lost his first tooth and the following week it's wiggly neighbor came out, suddenly he was drooling all over the place and was having trouble pronouncing some words - it was just like when he was a baby ! ;)

                  

I can't help but to smile back at that little gap tooth grin, shows just how much he has grown up. We attempted to go visit the dentist and while he didn't quite make it out the door like he did the first visit, he was so freaked out by all the medical equipment that it was impossible to do anything. Seems we will have to go to a dentist who sedates so they can do the x-rays they need, I was SO hoping to advoid him being put under yet again.

With as many times as this kiddo has been under anesthesia in his short life it seems like everytime we have to do it that we are rolling the dice on having some sort of adverse reaction to it. Of course what has to be done has to be done but rational logic doesn't always win in convincing emotions and nerves !

 Other BIG thing going on in our little world is Sebastian is starting public kindergarten next Monday !! It is a Montessori based school so I am over the moon with that - after researching different schools in the city vs his style of learning and basic personality I can see him reaching his fullest potential in this setting. As many of you know we have been having issues with the whole IEP deal ( what a shocker , huh ? ;) ) so at this point there is NOTHING in the computers about him, his past issues, where he is developmentally or what I have been working with him at home. The downside to this school is they have no ECE classes aside from 2 for the profoundly developmently delayed so that means the only other place for him is in a mainstream class.

  As wonderful as the thought of having him in a "typical" class sounds I know it would be impossible because of the on going potty training ... we are half way there if you catch my drift. Legalities aside, I could not consciously leave him with a teacher who is trying to also teach 20+ other kids with the possibility of a dirty pull-up happening. So much to my amazement a little plan was stitched together until we get this IEP deal figured out, I will hang out in the school and help out during the day then if Sebastian has an accident they can just bring him to me to clean up or if he gets too overstimulated then we can a few quite minutes together.  I am hoping this works out - just flying by the seat of our pants here... lol.   

   I wish I could be overall as happy as I feel about Sebastian being given the shot at a mainstream class without being "pigeonholed" by an IEP  from the get-go but there are still aspects I am rather concerned about that are bothering me. For the sake of everyone's privacy I am not posting those reasons on the blog in a public domain but anyone interested - it is ok to ask in private. 

 Despite my concerns I am looking forward to Monday and seeing how he does! I think he will love it once he gets use to it. I am already in love with his teacher Mrs.F for at least giving him a chance in her class and not discounting him like some people would like to. I know he was "assigned" to her class so really she is kinda stuck with us at least until the IEP is straightened out but it was nice to not be made to be felt as if A HUGE FAVOR was being done for us and he would be shipped out of the school as soon as the ink on the IEP is dry.

Zombie Patches

((   It has been nearly A YEAR since I have posted !! Wow.. going to try and get back into the swing of things here :) I could recap everything that has happened within that time but I don't think any of us want a blog entry the size of War and Peace, instead we will pick up were we are and I will fill in details as needed. :) ))

  We are now patching Sebastian's left eye during all waking hours in attempts to continue to strengthen his weak right eye. So far it is has done splendid , his vision has went from 20/200 to 20/40 in a matter of months . Of course all the time with adhesive stuck to the delicate skin around his eye it has taken it's toll, the skin being pulled and torn no matter how gently we tried to remove it or what trick we tried. Regaurdless that little boy would let me place it on his eye every single morning with little to no fuss because he knew the opthamologist said he had to wear it .
  It made it both proud and sad at the same time , it is such a small thing , especially compared to what we have already been through but it is heartbreaking to have him just willingly accept pain as a part of his daily life. :/
   The upside of it is that through one of my trach mom friends I discovered a wonderful,soft ,NON-ADHESIVE eye patch  that attaches to his glasses !!  They come in all types of designs and seem to be open to trying to find a design that you are interested in if they don't have it available.

Sebastian chose a sports theme patch ( big surprise there ! ) but he really wanted a zombie one , I think that if after our next appointment if we are continuing to patch I might contact the company and see if they would be willing to make a zombie themed one... lol !

( A note on the zombie thing : The kid is mildly obsessed with them ! Most little boys pretend to be firemen or soldiers - mine pretends to be a zombie. :)  Also , before you began to wonder excatly we let the kid watch around here don't worry he only knows and loves these types of  zombies not the bloody , rated-R type.)

Was planning on writing more tonight but am just exhausted so I will do my best not to wait another 11 months to post the rest of it ... ;)

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.

Wagon Good Time !

Yesterday between grumpiness and rain drops Sebastian got to visit with his friend John , which delighted him. John's mommy and I unleashed the boys on Wal-Mart and let them run amok , lol.

Afterwards we stopped Sebastian's Nana and Papaw's house where he got to play with everyone and his new golf set. The set has three different little plastic clubs , favorite is purple putter which is played with so much the actual head kept falling out of the post -- repeatedly. Instead of getting upset he either brought it to someone and proclaimed "Fix it" or eventually just did it himself considering every time he swung it the head went sailing...lol.

Part of the fun also included playing with the dogs and talking who ever he could into pulling him in the wagon. Later he ended up pulling the dogs around in the wagon , one doggie loved it , the other ... not so much.

Still weaning off the steroids and the kid is still eating us out of house and home. Also, last night I noticed Sebastian is getting a hint of steroid cheeks either that or it is the 34092340794 calories he is taking in everyday , lol !

The Easter Egg Hunt That Ended in the ER

Okay , not totally accurate but wow what a great title , lol.

Easter eve was a rather eventful day ! It started at 4am which Sir Grumpypants making an appearance to two already exhausted parents . After a hour full of tears ( not just Sir Grumpypants either, lol) we finally got him calm and back in bed heading towards the land of Nod.

Later in the morning when Sebastian woke up we did the normal routine of getting up which entails him yelling " Ready to get up ! " from his crib until either DH or I appear. All bubbly and awake with the thrill of being alive I skip into his room to give him a toy to keep him busy so I can make a quick visit to the other end of the house so as to avoid any mopping . As I walk into his room I see his hand at his trach which he rarely , if ever , bothers. I fuss at him a bit and he pulls his hand away and ... there is no trach ! The dang thing is laying in the bed next to him ! He is just talking away and acting totally normal while it sounds like a tornado siren has suddenly started to sounds in my head. As I am threading the new ties on the new trach I realize I have no ideal how long his trach has been out because his sats never dropped... ( One good thing came out of the trach coming out ... lol)

After a little argument of " No trach , No trach " and a wee bit of wrestling to make the morning more interesting I get the trach back in with no trouble. Keeping in the spirit of the now , crazy morning I just give up and settle us down infront of the Wii which causes Sebastian to hop, holler and all kinda of other crazy , cute things while I attempt to gather my now shattered nerves.

An hour later we head back into his room for his normal morning meds which include an albuterol treatment. After his breathing treatment I go to suction him and it won't go past 4 , for those who don't know this is where the robot from Lost in Space starts freaking out and yelling " Danger , Danger Will Robinson !" Normally the suction cath should pass through with no resistance so usually this means a plug .... in this case it seems it was another bad trach... We now have a total of ten of these now , the circumference of the trach tube gets smaller and smaller inside which doesn't allow the suction catheters to pass though and remove the mucus ... bad bad thing folks...

So , at this point he has had his albuterol which causes his tracheamalasia (floppy airway) to get temporarily worse and we are home alone so I am not comfortable changing it , just in case.... lol. Also , now we are down a trach so I only have one spare trach . I call our DME ( medical supply people) and get to have a lovely go round about needing a trach - now - not on Monday. Three hours later we had a new one tucked safely away in our emergency bag.

Despite having to cancel the day before due to Sebastian's asthma we headed over to his Grampu and Grammy's house for an Easter celebration with high hopes. After an egg hunt that Sebastian enjoyed immensely - the actual plastic eggs were his favorite part - ( He has a serious thing about plastic eggs currently , lol) I noticed his breathing sounded funky. I called the pulm and after a discussion we decided Sebastian needed a trip to the ER. We had a quick dinner before we went because we knew it would be the last chance to eat for quite awhile then headed out.

Sebastian did surprisingly well at the ER and was fine until about half an hour before we left, it was 4 hours past his bedtime after all ! At the ER they doubled his Pulmicort and restarted his Prednisone in hopes of boosting those lungs and sent us home .

At this point Sebastian is starting to wean off the steroids and thank God for that because they make him insane !! I liken it to living with Sybil , he just has no control over his behavior/emotions. I feel bad for him , it can't be much fun to be like that, it sure isn't fun to live with it. Now with the weaning it has started to subside some , much to our relief !

Still around

We are still around, just have been laying low. Sebastian is doing well , currently getting over a small case of trachities and working on getting him tested for Autism through a special group locally. Looking into checking to see if he is having silent seizures and scheduled to see his Ped surgeon to discuss his next (yet unscheduled) bronch - sounds like he has some nasty gran tissue in there again - ugh !

Third Birthday

Three years and one day ago a teeny tiny, fuzz covered , wrinkly , red, baby boy came into our world and shook it up. It has been a blast ! Even with such heavy hearts we can look at Sebastian and remember that miracles really do occur.

Due to the kind heart and quick thinking of family , Sebastian had a lovely birthday party hosted at their house and was able to play with cousins he had only seen previously in passing. It was a welcomed break from our current days. Sebastian was the recipient of many great gifts , one of which , a kiddy laptop toy , he played with until we pried it out of his little hands at bedtime , lol.

Around here we are doing as well as expected , I guess. Sebastian is starting to act out in ways he never has before whining, pushing, crying and even hitting !! These are so uncharacteristic of him it is a bit hard for me to even write it. As some has pointed out his is getting to "that age " - (the threes are the new terrible twos , ya know ;oP) but I think , primarily, he is having trouble "adjusting" ( for a lack of better words) to this new life we now have. He may or may not realize his Grandma is gone , he hasn't mentioned anything or even alluded to it , other than dragging his blankie around with him all the time but I know something feels amiss to him.

My mom often helped get him ready for bed and snuggled with him until he fell asleep or that would post up in front of the TV and watch cartoons together , DH and I can ( and DO) do those things but of course we aren't Grandma.

On the other hand I know he notices Mommy and Daddy are acting much different and Daddy is currently his primary care taker ( and doing a fab job if I may say ! ) so that is also throwing him off a bit.

On a lighter note....

Thanks to my friend Ellie every time Sebastian now sees Barack Obama he jabs at it and says " Pres-a-dent O-ba-ma " This made for a very interesting time watching the inauguration.. lol....

Also during the inauguration Sebastian kept asking for us to play the Wii ( he loves to watch) ... repeatedly. I finally said that once Obama was done speaking that we would turn in on , within what seemed like a nanosecond of his speech commencing Sebastian jabbed the TV screen and informed us " Pres-a dent O-ba-ma all done , turn off , play Wii " So much for the kiddo sucking up history ....*sigh* lol

RIP Grandma

Sebastian's grandma (my mom) passed away Saturday morning, she was only 53. Friday night after watching Wheel of Fortune Sebastian's favorite show) we headed out from the hospital because the wind chill was threatening to dip in the negatives again and I was handling Sebastian and all his equipment alone. She and Sebastian gave each kisses, she told him she loved him and I told her I would talk to her later in the night. It seems fitting since he was the number one thing in her world. One of the more upsetting points is Sebastian's 3rd birthday on in the 24th (mine 26th) and we planning him a party to celebrate him making it so far. It would have been an affair to remember , she was so looking forward to that and planning another wingding for when he gets his trach out his spring ( fingers crossed).

We are working on arrangements later today .... Anyone interested in attending please email me at Shylent@aol.com for more information.