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 !