tag:blogger.com,1999:blog-2667840098918963082011-10-22T17:07:32.967-07:00Please pardon the mess while I change a few things around :)Shylentnoreply@blogger.comBlogger431100tag:blogger.com,1999:blog-266784009891896308.post-27257678124722542912011-08-21T19:00:00.000-07:002011-08-21T19:00:34.779-07:00

     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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-8370415499120487952011-08-17T17:10:00.000-07:002011-08-17T17:10:22.529-07:00

 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

Shylentnoreply@blogger.com4tag:blogger.com,1999:blog-266784009891896308.post-50083182811947444222011-08-16T00:28:00.000-07:002011-08-16T00:28:27.495-07:00

   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

Shylentnoreply@blogger.com0tag:blogger.com,1999:blog-266784009891896308.post-78319772463594592422011-08-11T21:26:00.000-07:002011-08-11T21:26:26.344-07:00

 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

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-36310862011508711712011-03-30T22:43:00.000-07:002011-03-30T22:43:28.418-07:00

((   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

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-49569377300176876492010-04-03T13:35:00.000-07:002010-04-03T13:35:54.588-07:00

 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

Shylentnoreply@blogger.com0tag:blogger.com,1999:blog-266784009891896308.post-64154331542567071332010-02-27T01:25:00.000-08:002010-02-27T01:25:24.133-08:00

    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

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-5794356356731051802010-02-24T19:15:00.000-08:002010-02-24T19:15:20.835-08:00

 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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-68864622618786484972010-02-20T01:33:00.000-08:002010-02-20T02:58:04.260-08:00

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)

Shylentnoreply@blogger.com3tag:blogger.com,1999:blog-266784009891896308.post-35232491338631794852009-07-24T15:52:00.000-07:002009-07-24T16:31:55.191-07:00

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)

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-89243048158302055892009-05-04T11:28:00.000-07:002009-05-04T11:56:43.481-07:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-41318317223611691232009-05-03T08:19:00.001-07:002009-05-03T09:07:38.299-07:00

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

Shylentnoreply@blogger.com0tag:blogger.com,1999:blog-266784009891896308.post-56654246801164795542009-04-24T05:50:00.000-07:002009-04-24T06:11:03.098-07:00

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

Shylentnoreply@blogger.com0tag:blogger.com,1999:blog-266784009891896308.post-60563029467619869892009-04-12T10:38:00.000-07:002009-04-22T22:50:17.464-07:00

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

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-79394601933922192932009-04-01T10:55:00.000-07:002009-04-01T11:00:51.927-07:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-61867304365460869952009-01-25T00:17:00.000-08:002009-01-25T01:05:35.224-08:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-15387667115269517152009-01-17T23:58:00.000-08:002009-01-18T00:22:48.429-08:00

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

Shylentnoreply@blogger.com4tag:blogger.com,1999:blog-266784009891896308.post-50637146525762963712008-12-22T22:52:00.000-08:002008-12-22T23:19:55.457-08:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-78963618223599466482008-12-12T23:13:00.000-08:002008-12-12T23:31:21.064-08:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-91504441003641846982008-12-05T23:37:00.000-08:002008-12-06T00:15:35.274-08:00

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

Shylentnoreply@blogger.com4tag:blogger.com,1999:blog-266784009891896308.post-17293980824776033682008-11-20T20:28:00.001-08:002008-11-20T20:57:12.899-08:00

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.

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-74956333501728358592008-11-16T19:20:00.001-08:002008-11-16T20:10:22.636-08:00

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

Shylentnoreply@blogger.com3tag:blogger.com,1999:blog-266784009891896308.post-83881540502089800252008-11-15T20:07:00.000-08:002008-11-15T20:33:08.268-08:00

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

Shylentnoreply@blogger.com3tag:blogger.com,1999:blog-266784009891896308.post-59245032465857535032008-11-14T20:02:00.000-08:002008-11-14T21:28:45.509-08:00

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

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-29070294678638246302008-11-08T21:00:00.001-08:002008-11-08T23:29:47.103-08:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-75776741878789264202008-09-05T22:45:00.000-07:002008-09-05T23:52:19.921-07:00

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

Shylentnoreply@blogger.com5tag:blogger.com,1999:blog-266784009891896308.post-73022733144410756822008-08-28T22:14:00.000-07:002008-08-30T07:51:58.872-07:00

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

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-63369049019059744952008-08-24T15:11:00.000-07:002008-08-24T16:29:07.475-07:00

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

Shylentnoreply@blogger.com4tag:blogger.com,1999:blog-266784009891896308.post-86657281370200359362008-08-21T23:24:00.000-07:002008-08-21T23:42:56.700-07:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-29143362744299299972008-08-20T23:04:00.000-07:002008-09-01T21:39:07.393-07:00

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.

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-47226233418278788442008-08-18T22:43:00.000-07:002008-08-19T00:13:09.691-07:00

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

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-37412928537219687142008-07-27T22:18:00.000-07:002008-07-27T23:13:29.737-07:00

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 ,

Shylentnoreply@blogger.com3tag:blogger.com,1999:blog-266784009891896308.post-54711209254052509962008-07-24T21:23:00.000-07:002008-07-24T22:57:08.193-07:00

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

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-34989725380446103682008-07-20T02:26:00.000-07:002008-07-20T02:40:42.126-07:00

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

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-58285609214864263132008-07-19T00:04:00.000-07:002008-07-19T01:12:56.895-07:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-89487653988413857412008-07-17T21:46:00.000-07:002008-07-18T00:11:50.015-07:00

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

Shylentnoreply@blogger.com2tag:blogger.com,1999:blog-266784009891896308.post-6283456444016924802008-07-16T20:25:00.000-07:002008-07-16T21:52:05.114-07:00

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

Shylentnoreply@blogger.com3tag:blogger.com,1999:blog-266784009891896308.post-81086287146331995252008-07-13T21:24:00.001-07:002008-07-13T21:48:33.095-07:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-32972864988527019392008-07-12T00:49:00.000-07:002008-07-12T02:06:13.255-07:00

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

Shylentnoreply@blogger.com0tag:blogger.com,1999:blog-266784009891896308.post-20206035043480801612008-07-09T21:10:00.000-07:002008-07-09T21:54:05.535-07:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-38736918473415210002008-07-08T22:19:00.000-07:002008-07-08T22:56:47.125-07:00

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...

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-89734874456290166362008-07-07T23:09:00.000-07:002008-07-07T23:22:20.447-07:00

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

Shylentnoreply@blogger.com1tag:blogger.com,1999:blog-266784009891896308.post-41939772041724062152008-07-05T02:57:00.000-07:002008-07-05T02:57:13.160-07:00

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

Shylentnoreply@blogger.com0