First Stop .....

Our first stop on the crazy Christmas train is located about 30 minutes away from our home at Sebastian's Grammy and Grandpu. (These two are better known as Jamie's dad and step-mom.) After a lovely dinner where Sebastian was slightly more interested in running amok then the sweet potatoes we opened gifts.

Sebastian , as many as you know , is somewhat obsessed with bowling so needless to say he LOVES his new bowling set. The cool part is that they are made out of a rubbery foam substance so he can actually play with them - which he has since the moment he opened the box ! (We have a neighbor who lives below us who literally complains when we walk, wash dishes or try to do laundry by pounding on the walls but that is a whole other post.)

Some of his other gifts include some Dora videos, a cute little toy fishing set, a set of Spud Buddies, some coloring books , a Mrs.Potato Head (which Mr.Potato Head appreciates) as well as some other fun goodies which he has been enjoying.

After all that fun poor little guy was tuckered out and after a few dozen rounds of bowling in the hall with daddy was ready for a full night's rest.

Santa Baby

Today , on a whim , DH and I took Sebastian to see the big man of the season , not knowing what the outcome would be. We were pleasantly surprised ! He waited in line with very little fussing , then went up and sat on Santa's lap without any incident. To our surprise he even told Santa some of what he wanted for Christmas - balls and cars. Even the pictures part went well, a pleasant look and no wailing small child = a small miracle to me , lol !

One of Sebastian's favorite things right now is periodically throughout the day to bring me a random item (this can range from one of my house shoes and a FP Little Person to a broom and stuffed animal) and announcing " New Present". He is such a goofy kid !

Hippotherapy and D D D Dora , Dora ....

Who's that handsome boy on that horse ?? Sebastian , of course ! Today was Sebastian's first run at hippotherapy (aka horse therapy) and he did fabulous !! I was proud of him ! At Miss Jane (his OT) worked with him he put him helmet on and got to meet Mickey , the pony he would be riding. Sebastian wasn't too sure about getting on Mickey and put up just enough fuss that Miss Jane had to get a extra set of hands to help out with riding. Once he got on , did a bit of riding and was allowed to shoot some hoops he was a happy boy !
While on the horse they have the kids do a range of various activities such as throwing balls in a basketball hoop, hitting a ball with a bat and riding in different positions.
After about half an hour of great therapy Miss Jane and Sebastian headed indoors to work on steps and a few other fun things which he thought was wonderful ! When it was time to leave Sebastian refused to leave and it took three adults to "convince" him to go out the door, lol. Now he keeps asking " Go see horsies ?" LOL

Later in the evening we went out to dinner where we were informed by his highness that he was wanted pancakes , just curious we tempted him with grilled cheese, mac n' cheese and even chicken nuggets... Nope... pancakes...lol So yes, he got his pancakes and even some sausage that he ate every bite of - most of which with a fork.

Before heading home we had to stop off at the store for a few odds and ends. At this peticular store they have these awesome car shapes carts you can rent for a dollar and it has a little TV inside that plays different cartoons. The one we got played The Backyardigans, Wonderpets and Dora the Explorer. The first cartoon was Dora and after it went off Sebastian complained and wanted it back on, unfortunately it is just plays on a loop so Dora was done for the time. Once it cycled back to Dora the Explorer Sebastian was one happy little dude ! He was talking back to it and just having a grand ole' time.
One the ride home , approx 40 minutes or so , we were entertained by Sebastian who chattered about Dora the entire ride. It went something like this:
"Where's Boots? Swiper swiping no, say backpack " ( To which we would sing the backpack song) " There's Map, Strawberry Hill, Boots, Dora , No swiping Swiper, Backpack , say backpack."

As I was getting him out of his car seat to go in the house he looks at me all serious and says "Dora on TV" I told him no Dora tonight but we would try to find Dora on TV tomorrow.... Guess I need to bust out my own little map and find Dora seems like we have a Dora fan on our hands , lol.

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)

Rainy day adventure

For the first time since escaping the hospital Sebastian had some serious outdoor time, who cares it was sprinkling ! We explored the alley near our home where we found a leaky gutter dropping huge, loud plopping rain drops all the way down to where Sebastian tried to catch them. Puddle splashing was pretty much a bust since all we could find was one barely big enough for both his little feet to fit in at the same time, he still enjoyed being allowing to stomp and splash though. Onward down the alley we found a cut off pipe embedded in a concrete wall , which , according to Sebastian was the perfect place to drop a handful of tiny pebbles one by one , trying to watch each one as it fell.


Later in the day we all headed to the park where we wandered along a walking path in the woods and played in the sprinkling rain on the playground.



Poor Sebastian was so worn out that he yawned all the way home, through his bath and was at the worn out little kid point where their head just about to spin before he passed out.
About an hour into his sleep he woke up sobbing "okay,okay" and was inconsolable. I tried everything , even moving his radio next to his bed and playing 2 different CDs - no luck. Eventually , after about 45 minutes I was able to soothe his back to sleep.

Sebastian is now off all antibiotics and his lungs sound better now than they have in a LONG time. Infact he, on average, is only getting one albuteral neb treatment a day - unheard of, lol !

The Pattibob shoe inserts did not works for Sebastian , seems he needs something with even more stability so we will be going up to the Pollywog or Cricket (href="http://www.dafo.com/index.cfm?pageID=3079") to see if they suit his needs better.

Lastly, today Sebastian was tested for his speech and equaled out to a smidgen below average for his biological age !!! I am dumbstruck ! He has went from a infant range to where he should be in under six months or so !

WE ARE HOME !!

We finally got out of the hospital on Wednesday afternoon ..woohoo ! I think Sebastian was unsure of what was going on , he had a strange look his face and we headed out to the car. Once we got there and was in the process of unloading I made the mistake of trying to put him in his car seat, lol. He wanted to ride around some in the hospital's red wagon more so we did a quick lap in the parking garage and then had a car seat battle.

Once we were in the car and headed to the store to pick up some meds he needed Sebastian kept looking around like he was amazed at everything, just soaking it all in. We let him run around a bit at the store, grabbed our goodies and headed home. He was so happy to be back , it looked like hurricane Sebastian hit his room !

That evening when I laid him in bed he patted the huge multicolored stuffed alligator he sleeps as a pillow, smiled and said "bed","lay down" "me bed" and about 15 minutes later he was draped over the alligator fast asleep.

Since then it has been kinda of strainded getting back into the groove of daily living. Sebastian is having trouble at bedtime and has woke up saying "no stick" and "go away" throughout the night. While the 'roid rage has subsided there are still some ugly behavior to shake out , epecailly these little tantrums that have intensivifed , that are pretty minor in nature ( loud whining,getting stiff and arching back,trashing and trying to sit down)but with him weighing in at nearly 40 pounds it is getting harder to force him into the cart or the car seat without a weight lifter's belt ! He has quit banging his head but I have had to pull his fingers away from his eyes on couple ocassions , nothing too bad.

Sebastian has come on on Zyvox, which is a absolute battle to get him to 3 times a day , but it is slightly scarey because in conjunction with the albuterol he takes can cause dangerous levels of high blood pressure. He took at the hosptial with no trouble and yesterday at a ped follow up his blood pressure was fine so , so far so good !

During his stay Sebastian's speech has progressed and now he is saying more things than ever , even his own little jokes from time to time, silly monkey ! He is finally getting to were he can tell us what is going on in that little head of his - we are in trouble now !!

Super quick update

We have been in four days now. Sebastian is off the IV fluids and officially diagnosed with MRSA, which he been colonised with since forever, now it is rearing it's ugly head. He is on 2 steroids, breathing treatments every 4 hours (bumped down from every three hours this morning), benadryl and an IV antibiotic that runs over a two hour course every since hours (increased from every seven hours yesterday)

He has 4 different IVs now and hopefully/most likely placing a PICC line tomorrow. The most recent one to go was on his left bicep which infiltrated. We have no ideal how long the vancomycin leaked under his skin but is it pretty swollen and bruised , you can tell it hurts a lot more then he is telling us. I'm keeping my fingers crossed on no tissue damage, which everyone says there should none of but after reading a bit on the topic I am nervous.

Yesterday was a bad, ugly day. Between all the medications, treatments, vitals, repeated sticking and just plain coughing his head off the kid couldn't get any quality sleep and was fatigued. He finally passed out and his sats stayed in the high 80's - low 90's and this was on 40% oxygen which was really scary. We bumped it up to 50% and he rose to around 94 or so then eventually climbed upwards in time.
He was just so tired he couldn't even cough effectively enough to clear his airway.

Since he has MRSA was Sebastian isn't allowed outside his room and it is so tiny that when I fold out the recliner at night it completely blocks off the bathroom door one way and if it slides downwards a few inches it blocks the entrance. I would say it is easily about half the size of a normal hospital room. Needless to say we are all going stir crazy - especially the kid.

I am feeling bad for Sebastian, not only is he sick , he is getting traumatised as well. As soon as someone walks in the door with that yellow gown on he starts to meltdown , since we are in isolation that means everyone but us wear a yellow gown and gloves. Today he is starting to back up into the corner behind the door crying 'no,no,no,no" when ever some comes in. Even breathing treatments and trach care have become serious fights. He spends most of his time (unstandable) upset and this morning I saw his moving around in his bed while sleeping saying "no,no" while grabbing at his IV site. If a staff member is in the room and one of us pick him up he goes ballistic because he thinks something is about to happen , which , unfortunately is more often true then not.

Sebastian in Hospital

At the pulmonology follow-up today (that would still be Thursday for me since I have yet to be to bed) the DR expressed concerns that the bacteria has done a number on the kid and now the word pneumonia is now being thrown around. They do not believe he has it per say , just at a super duper high risk for it.

Sebastian has now be admitted to hospital for IV steroids and antibiotics, they expect us to be here for at least the weekend.

He is not a happy little guy, this whole thing is very confusing and scary for him , the last time he was in the hospital was last November for a capping trial and that is a completely different ballgame. Despite it all he is trying his best to be a good boy - he is even keeping his hand off his IV site for the most part, with gentle reminders of " Only nurses touch the IV" , lol.

I will try my best to keep everyone updated, the internet connectivity is kinda hit and miss here.

Good night all !

9-25-06 to 8-21-08

Tonight one of Sebastian's trach buddies lost his battle with his congenital heart defects. His mother and I have became close over time and it feels as if we have lost a member of our own family. Please pray for his family during this time.

A trip to the ER

Sorry I have been neglecting the blog but as most of you know anyways Sebastian has been ill.

This afternoon , within minutes of beginning physical therapy we had to call it quits. We noticed he was breathing loudly and retracting , after putting the pulse ox on him we discovered his heart rate was hitting 177 and his O2 level was at 93%, in a nutshell not so great. After a bit of debating we put a call in to the pulmonolist who gave us an appointment for later in the week. We tried everything in our arsenal and we that just didn't work we headed to the ER.
At the ER we were quickly passed through reception , flew through triage and put in an ER room where we spent the next five hours or so with a very angry , hungry, thirsty little boy in the dire need of a nice long nap. We spoke to countless people, had a chest x-ray (all clear) and they attempted to do a sputum culture on him but couldn't get enough to really test.

After all the miserable waiting we were sent home with yet another antibiotic and told to follow up with the pulm this week.

It is so frustrating to see your kid sick and obviously to you getting more ill, not have a clue what it is or how to fix it.

For now we are having to sit on our hands and watch and wait.....

And the beat goes on

Things are mostly quite on the home front, thank goodness, we like it that way !

Sebastian is still chugging along on the Tobi(antibiotics) which STINK to the high heavens ! After washing his hair tonight I had to change his trach ties , a process he is already none to happy about and was made grouchier about due to being sleepy. I use a little trick I learned off another trach mommy , secure the trach in place with suction catheters so I won't need to hold the trach in the entire time and allows me the use of both hands. As I was trying to slip the last Velcro piece in the falange's hole Sir Grumpy Bottom grabs his trach and yanks it straight out, decannulating himself - weeeeeeeee...

Quickly untying the suction caths I finish replacing the ties and we go about putting everything back where it goes. I notice under his ties just as funky and irritated red just like his stoma and under the flanges. I have always been intrigued by metal trach chains , looks like now may be the time to locate and procure some - soon ! With 95 + temps ( even a steamy 98 -100 forecasted one day - eek !! )his poor neck could use a break.

As usual, well as of the last few months, Sebastian has spent most of the night so far coughing up some lovely little gifts for me and I have already suctioned him twice , once having to switch out catheters because the secretions were so thick. Keep in mind this is with 100 % humidity from his cup and .50 Pulmicort x1 daily , I am hoping he is just bringing up the yuck that has been hanging out in his lungs and we aren't going to have to readjust his daily maintenance meds.

On a last note , Sebastian has began two and even a couple THREE word phrases, my favorite being "Help...Me " when he is getting frustrated with something and needs a little assistance.

93 and trampolines

That would be my son's best bowling game so far - pretty good since it was the second of the only two games he as ever played. Also, sadly enough he beat both his parents in both games.. what can I say the kid is good ?!?!

On a fluke (and a really good Thursday special) we ended up at a bowling alley and Sebastian was having a good time even before we started our game. The music was blaring and all around him people were sending various colored neon balls down brightly lit lanes until they crashed and made loud noises. Apparently this is the recipe for fun to a two year old.

After donning a pair of size 8 bowling shoes,(seriously , did anyone else even knowthat toddler size 8 bowling shoes even existed!)picking out his very own neon yellow ball and adjusting the ball ramp Sebastian started his very first game of bowling. The first game was DH :56 Me:86 Sebastian:93... the second was DH:86 Me:85 Sebastian:93 In our defence he did had a ramp and bumpers... lol.

He was really good about taking turns and towards the end was even carrying his 6 lb ball and putting it on the ramp all by himself - with mommy and daddy on either side of course. Between turns he would amuse himself by cheering us on and boogieing down to the music.

Earlier in the day Sebastian went to a gym to climb, tumble, bounce and balance for some unofficial PT. I am proud to announce another first ... running the long trampoline ! A light bulb finely went off inside his little blonde head, he got the ideal and was off running with the best of them. This is such a good thing as it helps improve his balance and with his motor planning. As of next week he is being fitting for PattiBobs to assist with his balance. PattiBobs are simply shoe inserts ()for kiddos with mild to moderate gaint issues/low tone. It will exciting to see what improvements that make !

I Love You Dave !

My son, the precious child I have held in my arms and fed countless bottles too in the wee hours of the morning, the precious child I coaxed to take those long awaited first steps, the same precious child that comes asking hugs after getting a boo-boo (even if he did do it on purpose) ..... is a royal smart alack !

For awhile now when we have asked him to say "ma-ma" he smiles that silly little smile of his and says "da-da" and vice versa. Months later this has been upgraded to "Mom-me " and "dad-de".

Tonight in route to home I ask him to say " Sebastian"... pause.. Again I ask him to say his name.... pause... a third time I ask him to say Sebastian ...

He smiles and says "Dave"

Sorta, Kinda, Maybes

After going over some older blog posts I have noticed I write in approximates most of the time.

As a parent of a trached former preemie I live a life of approximations. Of course there are a few solid things ... we meet with the therapists for one hour at a time weekly, we have be at the Dr at X:30 in the morning , there are exact doses of certain medications, the trach really needs to stay in the neck . ;o)

Otherwise we are floating adrift in a sea of possibly maybes.

Possibly today Sebastian will run normal,

Maybe he will be able to speak in a appropriate manner for his age,

Possibly this next procedure really will be the last needed,

Maybe he is just really tired not getting sick-again,

Possibly he just needs the bump in his O2 for tonight only,

Maybe we will get through an entire meal without me having to dig food out of Sebastian's mouth because he has stuffed too much in it again since his jaw muscles are still too lax,

Possibly he will sit still long enough to get all his treatments so he won't wake up at three AM scared and gasping for air.

Maybe we will get the trach out before the fall

Possibly won't - you never really know

Maybe for once something won't happen on the way out the door and we can arrive somewhere on time !

Possibly someday I won't have to worry about Sebastian splashing in the tub

Maybe someday we can snuggle up and nap together in the same bed

Possibly the next time we go to the park he won't get "stuck" pacing the ramps

Maybe next summer , his third, he will touch sand for the first time

Possibly he will even be able to play with chalk

Maybe some day I can drive my son in the car alonw without a oxygen monitor and a mirror to keep an eye on him

Possibly the next medicine will work

Don't get me wrong, I know in the overall grand scheme of things our life with Sebastian is pretty tame. He is amazingly strong and thriving insanely well for a preemie and I am thankful for that. I know he is stable and can go for super short periods at least without the trach and not code on us. With everything he has been through he is one super lucky little guy and we have it easy peasy compared to many of my fellow trach mommies, just this evening I am weary from the thought of it all.

At the pulm Sebastian was prescribed Tobramycin 2x daily x 30 days which we had to get through another DME... it arrived today. A huge bag stuffed with more medical goodies to stuff,wedge and cram into his own personal PICU.

Possibly this medicine will work.....

The momma's not happy

By a fluke we got Sebastian into the pulmonologist today and found out my poor baby has been harboring two separate bacterias in his lungs/airway for the past 3 months. :o( I am so angry I could spit nails ... a few shards of glass boot !

When we originally called the pulmonologist in mid April and about the super stinky (seemingly happened overnight) red stoma, yellow secretions, hacking, runny nose and eyes and all around grumpiness which those who know him know this is a big sign something is amiss. Being one of the only two ped pulmonologist locally , both of which are in the same office, they were understandably booked up. They called in the antibiotics for him and armed with a refrigerator of yogurt to counter act those yucky tummy problems and inevitable yeast flare up we started on it.

By early May we were at the pediatrician with it , they with ordered a trach culture (swab) and for some reason sent us to the local children's hospital to get it. The lab techs at the children's hospital said they didn't know how to do it ( yeah...I can't believe it either...) so they wanted us to take him into the ER to have someone in there do it. Like I am really going to take my already immune suppressed kid with a trach (aka. a hole that leads straight to his lungs) in to the germy ER for something as utterly mundane as a trach swab. So I take the kit and did the culture myself to get my kid out of the place as quick as possible. A few days passes and when it was time for the results , viola , no one could find them but after enough grouching she finally caves and gives me some antibiotics for the kid, the only the same ones that the pulm put him on despite not working the first time and regardless of me arguing over the uselessness of it.

Two weeks or so pass we return to the ped. this time we see the Nurse Practitioner and she put Sebastian on the same antibiotics but at a higher dose since it seems to knock the illness out for a week or so , logic is the medicine is working but he just needs more of it.

Yet another two weeks pass , nasty yeast flare up around the trach but the hacking and yellow secretions gone. The following week yeast almost under control... then the smell and yellow secretions began flaring up...anyone else seeing a pattern here ?!?!?!?

Back to the Ped's office again.. this round we get one of the other peds in the group who does a trach swab right then and there himself to send off and has has blood drawn to test in the office before we leave. Turns out that , shock me shock me , Sebastian's white count is elevated so after a wonderful exchange this ped trusts I actually know my kid better then anyone and despite not wanting too, gives me a prescription for a new antibiotic. This one works a bit better but also bombs in the end.

This is what has been going on for the past months, during this time we had a blood test, two trach swabs, three rounds of one type of broad spectrum antibiotics , a fourth different antibiotic (all oral) , added more nebulizer treatments, extra pulmicort, two different types of yeast treatments for the countless flare-ups, played with what we did trach care with ( the 1/3 peroxide water solution, just water, Eucerin and water mix) and changing the trach out at the first sign of redness around the stoma. That's not to mention having to cancel his T&A surgery , prescious lost hours of therapy he missed, miserable days with a grumpy , yucky feeling little guy and long nights of little sleep and lots of frightening coughing added into the mix.

After all this we got the pulm today who goes through the normal gamut of things then leaves the room to see if they can somehow access his test results. Less then ten mintues later they return and low and behold , in his file is the results of the culture and it showed he has had these two bacterias hanging out in his airway since friggin' APRIL !!!!! Can you even fathom how ticked off I was ?

Unfortunately I can not recall the exact names of the strains but the pulm said it was just normal junk that our lovely little trach kidlets get colonized with, nothing major to fret over and put Sebastian on a month of inhaled antibiotics. If needed we will continue in on a rolling schedule throughout winter.

After a few moments it occurred to me that if it is just on of those normal trach things shouldn't the one of the three people we saw at the pediatricians office at least had a clue. Now, don't get me wrong, I am sure they don't deal with many trachs there but I feel if they are taking on the responsibility of it they should at least familiarize their selves with it.
I inquired if the peds should have picked up on this and from what I understand this was a pretty basic ,open and shut kind of thing. *sigh* So , now I am feeling bad my poor kid ran around more or less sick for the better part of three months for no good reason....

Also the pulm is guessing this all started out simply enough.. Sebastian caught a little bug which , like most little bugs caused extra secretions and created a nice little breeding grounds for said bacterias to flourish. When given antibiotic #1 it just treated one of the bacterias and caused a yeast infection which can also knock down the immune system and that allows lucky bachelor #2 ...I mean bacteria # 2 to grow even more all the while never being treated. Since he had bacteria #2 still thriving , as well as normal spring allergies to help provide a germ breeding ground it then helped bacteria #1 to quickly regenerate..... Everyone still with me ??

On a fun note we got to visit Sebastian's NICU nurses from both hospitals he stayed at and showing off his silliness and smiles all the way. I also got to meet one of Sebastian's long time blog readers for the first time, she now works at one of the NICUs he was at, it was a wonderful moment.

Also went grocery shopping and Sebastian rode around in true and apparently very fun style !

Still sick but no worse

The title says it all....

Sebastian is still all gunky , at nights coughing up thick yellow tinged secretions , getting in coughing jags when not wearing his cap and the owner of one not so happy looking stoma. Also, he has been waking up during the night asking for a extra bottle, which I obliged knowing he feels poorly and he hasn't been eating so great, but secretly I think he just needs some additional snuggles.

As for his eating, Sebastian has been sustaining on yogurt and cereal bars mostly the last few days - throw in a few bites a grilled cheese here and there. Yesterday I managed to hide some broccoli and cauliflower under enough cheese he actually ate some and today he willingly and knowingly (lol) ate about a cup of carrots. I felt like I made the winning touchdown at the Superbowl ! This is how we know Sebastian is feeling less than stellar , he gets super picky, lol, otherwise he will try and pretty much eat anything.

Speaking of eating and the such Sebastian is now up to 36.5 pounds and 37 inches tall ! Not bad for a former 2 pound preemie ! According to the CDC ( http://www.cdc.gov/nchs/data/nhanes/growthcharts/set1clinical/cj41l017.pdf ) Sebastian at 30 months is now above the 95% for weight and right below 75% for height. Guess that is why so many people comment on him being a "big boy" when we go out.... if they only knew ... lol.

Weather was nice yesterday so we plopped the kid on his bike and took a walk. He has been wanting to get to ride on it so badly but with the weather and ozone action days it just hasn't been do-able.

Bummer

With school looming in to AM is seems Sebastian won't be able to go, which is double sad because he just got his very first big boy back pack this weekend. Over the last 24 hours he has started to come down with something yet again. His little nose is just a faucet , coughing his head off and his stoma is getting red again on top of some super funky tummy troubles. The red stoma could easily be just irritated from the secretions coming out from his super powerful coughs , I am hoping that is all it is , the kid has had a rough enough time lately !

Good news he doesn't seem too feel too yucky just yet - as long as he has his meds in him, lol. Today he spent most of the day just hanging out in his room playing quietly with his cars and wooden blocks.

<~~ Sebastian's self-portrait

Nana,Papaws,Grandpu, Grammys and lions... oh my ???

Thursday was family day , we went to DH's mom's home to visit for awhile where he , as usual went about his business of attempting to purloin his papaws watch and just being silly in general. I know what you are saying... Sebastian ? Silly ? Never....

Thanks to his Nana who took him to the mailbox with her to get the day's letter he every so often he now begins to chant " Mail , mail , mail " I am thinking renting him out for a Blue's Clues cover project (http://www.youtube.com/watch?v=jTSO45IuIpY) for a little extra cash. ;o)

After taking care of some other business we headed to zoo to met up with DH's dad and step-mom where Sebastian had a blast sliding down the splash park slide with his daddy and grandpu. He absolutely adores the splash park , every so often we pause, do a "trach check" where we more or less wipe his face and neck area down so nothing sneaks into his stoma. We also have a trach mask on him while playing but most of us know just how much that will help , especially on a Flextend, lol.

Apparently Sebastian spent a little too much time in the splash area because he went a wee but dusky around the lips prompting a quick stripping and change of clothes to warm up that pretty much coincided with a suctioning, lol. Best part was once I removed his cap he coughed up most of everything and we only got a small amount when we actually suctioned him.

Chitter Chatter

As many of you know Sebastian's severely delayed speech as been on ongoing issue for us around here. Until a couple of months ago he was evaluated at 3-5 months speech now he is in a solid 15-18 months with some 18-23 months , forgive me if I am off a month or two here and there but you get the picture, lol.

Signing wise the kid has taken off ! He is well into a 100+ signs , which amazes even me considering we never had any true quality of speech services until four months ago. Verbally he has blossomed as well, chattering all day long. He is constantly picking up new language , verbal and signing which we are so proud of !

Some of his vocabulary includes : Mom, Da-da, bah (bottle), ball, drawl (draw- duh, lol) , dah (dog) , kee ( kitty), karh (car), peas ( please) we-ah (wheel) coo-kee (cookie), key , booh (book),weed (read), yeddow (yellow), wed (red), boo (blue), stow (store), moor (more) boom, broom, 'round (around), wow, dude, gram (gram cracker) , feesh (fish) as well as attempts to mimic pretty much anything we ask him to.

Between his signing and speech he can pretty much get across what ever he needs, who can ask for more that that !!!!!!!! :o)

Cricket... cricket

Were you aware that the word cricket is funny ?? Apparent it is - at least to my kid it is. He's kinda odd anyways ;o)

Also , as of the 4th Sebastian is able to "play" a kazoo, sort of, lol. He does short humming blasts which is a HUGE thing for him. He loves the vibration of it and it gets him laughing before he can do much else. It goes .. hum.. giggle giggle.. hum... giggle giggle... hum... giggle giggle you get the picture.

Last night little bugger pulled his trach mask off and scored himself a little plug , nothing too major , solved it with saline and two suction catheter , no late night trach changes - woohoo ! He was sooo mad with me bothering him in his sleep, woooh boy did he fight me. Then he spent most of the night coughing up and clearing out lingering goobers so little sleep was had by momma.

All day today I had a ranging headache so I was looking forward to bedtime about 45 minutes after he woke up but again bedtime was a struggle of sorts. He finally gave up after two hours and a grape fast melt Tylenol later. I think after all his grumping and grouching he gave himself a bit of a headache , at least that is what he told me when I asked him what was wrong(Signed head+hurt) and about 20 minutes after his meds his heart rate dropped and he finally fell asleep.

It seems Sebastian has figured out how to bite into food as opposed to shoving the whole thing in his mouth at once. Can we say sensory issue ? lol I had some Mickey D fries and as always he asked for some . I handed him half of one and laid the other half down , reminding him to just put one piece in his mouth at a time. He did great then took a small fry out of the container on his own and bit it in half, again eating both properly ! I know it was bad but he probably eat 1/4 of my fries but I was so happy he was eating 'normally' I didn't care.

So all in all a rather normal day. :o)

School days

Today was Sebastian's third day of "school" , which is really a playgroup at a local special needs daycare, but don't tell him the difference. He loves going to school and the last two times threw a fit when it was time to leave, he wants to stay and play more... lol.

Also , Sebastian has been battling some illnesses lately , a long lasting cold of some sort and a fungal infection around his stoma due to the litany of antibiotics he was off and on for 2 months fighting off a nasty round of tracheitis. Don't quote me here folks but I think we may in the clear - for the most part. Under the flanges is still rather irritated looking but the smell is mostly nonexistent and the rest of his neck look great. This is excellent news because now we can get the ball rolling again for decannulation ! Woohoo !

Now I have to call the ENT to set up a date for surgery to remove his tonsils and adenoids, which we belive , why he is oxygen dependent while asleep - those enlarged adenoids. After he recovers there will be a bronching and maybe a sleep study depending on how his sats go while sleep with his cap on.

Last year we had a semi-epic battling trying to remove some really nasty chunks of granulation tissue (scar tissue) in a series of 10 bronching , equaling out to 1 a month for most a of year. Since he has went from last December without a bronch I am a wee bit concerned it may have grown back despite the Dr. repeated use of Mitomycin to heed the cells quick division and growth. Since he has stayed nice and pink during accidental decans and planned changed I think everything is status quo but still I am concerned for yet another hurtle to be placed in the way of getting this tube outta the kid's neck.

I've gotten to the point of "oh, well" with it - if it has to stay so be it , if we can get rid of it then -strike up the band !!! ... Just not the Doddlebops ... please !

First Post

Welcome everyone to the new site of Sebastian's Journey , a blog I began at the March of Dimes website back when Sebastian was still in the NICU. After a lot of thinking and some mild frustration with the MOD site I have decided to switch sites due to the flexibility it offers.

It has been months ( I have been a negletful blogger ) since I have last posted and oh my how this kid has changed but due to late hour I will have to leave you all hanging until tomorrow evening .