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SEBASTIAN'S JOURNEY
Shylent |
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MOVING TO NEW BLOG SITE
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Jul 08, 2008 06:50am (EST)
For those of you who have been following Sebastian from his NICU days onwards I just wanted to let you know I have relocated his blog to : http://sebastiansjourney.blogspot.com/
I hope you stop by from time to time to see what the kid is up to - which is pretty much any type of trouble he can find  . Be sure to leave a comment there so I know you came by !
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Posted by Shylent | Comments: (3) | Permalink
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HAPPY HEART DAY !
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Feb 15, 2008 09:36pm (EST)
Many of you are fully aware yesterday was Valentine's day , those who forgot are doublely aware of this fact I am sure ! 
Yesterday was also Congenital Heart Defect Awareness Day - CHD for short.
This is a subject that hits close to home because as many of you may recall Sebastian, like may preemies was born with Patent Ductus Arteriosus (PDA)...Here is refresher course on what a PDA is ...Patent Ductus Arteriosus (PDA)
A PDA, or patent ductus arteriosus, is a connection (called the ductus arteriosus) between the aorta and the pulmonary artery that doesn't close off after the baby is born. In utero, the baby depends on the ductus to get oxygen from the mother, since the lungs are not working (the baby doesn't breathe in utero). When the baby is born, there are hormonal changes in the baby that normally close off the ductus, since the baby is now breathing and no longer needs it. If the ductus remains open, it may cause an excessive amount of blood to go to the lungs. Depending on the size of the PDA and the condition on the lungs, the baby may have no symptoms, or be in severe heart failure. Patent ductus arteriosus is often closed in the cardiac catheterization laboratory by the insertion of specially designed coils. These coils sit in the PDA and expand to the point where they block all the blood flow.
Patent ductus arteriosus is the sixth most common congenital heart defect, occurring in 5 to10 percent of all children with congenital heart disease. Patent ductus arteriosus occurs twice as often in girls as in boys.
Luckily with Sebastian his PDA closed with two rounds of medication and we were able to avoid *THAT* surgery but not everyone is as fortunate.
Did you know in our country 1 out of 100 of all babies born will have a CHD of some type making it the 1# cause of birth defect related deaths ? Despite the fact there are 35 different forms of CHD and twice as many children die from them yearly than from *ALL* childhood cancers COMBINED yet research for childhood cancer research is 5 times higher
In doing my research I was appalled to learn only a penny of every dollar donated to the American Heart Association goes towards CHD. 
Anyways, there is someone who , which permission from his mommy, I wanted to introduce to everyone. His name is Tommy and he is about as cute as they get ! Someday when he and Sebastian get together the world better look out cause we will ALL be in trouble !
 <~~ Click the red box.
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Posted by Shylent | Comments: (1) | Permalink
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SEBASTIAN AND SIGNING
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Feb 04, 2008 07:58am (EST)
I am officially a mommy to a wonderfully insane 2 year old boy who's current goal in life is to see how badly he can destroy my living room on a daily basis !  Sebastian is doing great despite getting over a teeny spell of ickyness and possibly working on a few more teeth. We are actually going on almost 2 months of NOT seeing a DR or having a surgery !! That is a first in more than a year !! Wooohoo !
He had added a few more sounds to his babbling and his signing is phenomenal ! We are up to 40 sign or so , not including his favorite letter "a" and number "6" lol Here is what we have now :
Cat, dog, ball, cookie, want, please, thank you, rain, water, wash, drink, milk, car, sleep, blanket, baby, cow, pig, duck, bird, horse, daddy/mommy, play, eat, more, medicine, all done/finished, penguin, star, tree, lights, fix (ie a toy) shoe, socks, book, out, in, work, hat, music, star, love, wheels, brush teeth, brush hair, lotion, glasses, train , stop, wait, phone, circle .... phew I think that is all of them. Not bad for a kid who never had any real speech therapy ...  lol
Speaking of speech therapists we have yet another waiting in the wings. I missed her call on Friday so I will be checking in with her at some point tomorrow to get the ball rolling. My main concern is if she is pro signing, while 2 out of 3 of our past ST were firmly against signing all I have to say is my son is able to communicate with me via signs at this time and he will continue to learn signs despite any one's personal views.
If I had not started signing with him and with our bad luck with ST where would he be ? He most defiantly wouldn't be able to tell me he wanted a drink without grabbing , pointing and me guessing or having a meltdown, he wouldn't be able to tell me about seeing daddy brush his hair , which animal he wants to hear on Old McDonald's farm or the fact he has memorized his fairy tale CD and can tell me the next song before it comes on , lol ! If there is car,ball,cat,star or tree anywhere near I will know and if a dog dare barks everyone in the house hears about it for the next 10 minutes ,lol.
I know there have been a multitude of studies and reports on both side of the "sign or not to sign" , both of which 'have the facts' to support their case and bash the other side. In the end my little kiddo can chase me with a book signing "book please" for the millionth time , look out a window and tell me it's raining (or about to ) or just ask me to fix a toy when the batteries die , things I doubt he would be doing at this point if he had never been exposed to signing.
Another of our therapist have shared a client with our soon to be ST and has heard nice things so that is encouraging !
Sebastian is one lucky little man - he had four, yep that's right - FOUR birthday cakes this year ! lol. We had three celebrations with different family leading up to his actually b-day , a quite affair at home. We are considering having him an actual party on his Shouldabeen birthday which is in May when he shoulabeen born, at least then RSV and snowy weather season will be over and since he will be a bit older hopefully he will be a bit more in control of those little crazy legs of his !
I'm not hearing anything sir
little house - BIG BABY
Playing with balloons
me & my shadow
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Posted by Shylent | Comments: (5) | Permalink
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2ND B-DAY THIS MONTH !?!?!
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Jan 04, 2008 09:17am (EST)
Sebastian turns 2 at the end of January ... Where has time gone ? 
On Dec 14th Sebastian went in for yet one more granuloma removal as well as both a rigid and flexible bronching. Only a teeny smidgen had to be lasered off and DR.Ped Surgeon said his airway looked okay. Dr.Pulmonologist , who performed the flex bronch, made a discovery , my son has enlarged adenoids - looks like yet another surgery in the works , that will make either 15 or 16 , I forget. Also Pulm ( as well as DH and myself) want to have Sebastian get a sleep study done before decannulation. ( Can't wait to see how they managed to keep all the electrodes on that whirling dervish !!)
After the surgery he completely lost his voice and has only recently regained around 80% or so since and even now it is rather low and raspy. It has been a rough go not hearing his little voice laughing at things and squealing at me to read books to him. He is obviously enjoying having his voice back , he runs around growling, squeaking and just babbling in general. Today he *FINALLY* said 'mom' (with perfect pronunciation no less !) but I am not completely convinced it is in context although it does seem to be.
Sebastian's sign language is coming along wonderfully ! Yesterday he added the word "sleep/bed" to let us know he is tired and from all the Christmas festive he learned tree ,star, and light. Also he has began using the sign 'daddy' but it seems to be exchangeable either parent . The little guy is trying hard to sign 'cracker' but it comes out music and music is coming across as fish , lol ! He is such a hoot sometimes !
Christmas was very good to the kid - a bit too good I think ! Santa , mommy, daddy and very loving grandparents of all shapes and sizes spoiled this kid so bad !! It was so extreme we have actually had to set some aside for later for him to play with. Needless to say present giving for his birthday will be very low key ... Most likely just one or two small gifts ( there are a couple books I have been eyeballing for him) and a trip to Build-A-Bear Workshop with a good friend of mine and her little guy to make Sebastian a dog-dog.
We spent New Year's Eve and DH's family and had a great time, there was another little guy at the party the same biological age as Sebastian , well within a month , and they were the same height and looked the same weight. I know everyone probably thought I was crazy but I could have watched those two wander around all night ! It was amazing knowing from the tiny little being he came from to see him the size of a 'typical' (almost) 2 year old !!
The kid has been thriving as usual , up to 32 lbs and 31 inches on Dec 14th... Finally had to give in and trim his bangs some ( ) so now he is sporting the ever impressive 'baby mullet' - I just can't part with the curls yet !
Sebastian & his best buddy
Sadly enough this wasn't all of them
Happy ( HEALTHY) 2008 Everyone !!
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Posted by Shylent | Comments: (3) | Permalink
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LIFE'S GOOD, BIRTHDAY PARTIES AND SURGERY THIS WEEK
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Nov 17, 2007 07:19pm (EST)
Life has been rather peaceful lately, please note I did not use the word "quite" because that is one thing it is most definitely not ! Sebastian has became a rambling chatter box who pops out words like dang and dink every so often.
Yesterday we were coming home from the store and chatting with Sebastian in the back seat, we tried 'ho,ho,ho' with him - his interpretation - "no,no,no"
His therapies are going well , PT is very happy with his progress, although we are needing to zero in on certain things. When Sebastian walks he looks like a drunken Frankenstein so we need to focus on squatting/peddling or anything to flex those little knees. After searching for days we finally found a really neat trike for him that has a 5 point harness ( still fine tuning that balance ) , a nice size bucket in back ( any medical necessities ) a handle for mommy to push and a way to lock the front wheel so that the "backseat driver" has control.
The only two downsides are no straps on the petals to hold his feet on but we are a crafty bunch around here and I have a long lived love affair with Velcro and Gorilla Glue so that is easy enough to modify for his needs - then there is the price ! $100.00 !! I guess really that isn't so bad considering it able to be used until the kid is four but we just aren't able to plunk down that kind of change on a whim, it is frustration but we are watching it closely in hopes of the price dropping.
Last week Sebastian attended his first group birthday party ! A friend of mine's son turned 4 and had a party at a local kid's party place and Sebastian had a blast ! It was the first time he had been around more than one other kid and I was a bit nervous to see how he reacted to them and how they would received him. He ran (or tried to, lol) played, got pushed around , banged on instruments , ate cake, played with Lego's, ate some cake, had toys yanked away , ate some cake , flirted and ate a bit more cake. It was so nice to see him look and be treated like a "normal" kid.
Later this week Sebastian has another broching and if all goes well we may have a 23 hour hospital stay to monitor him for possible decann. As always I am being caustiously optimistic but who knows, maybe the next pics I post will be of a 'nekkid neck'.
Music Makers at B-day Party
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Posted by James SooHoo | Comments: (2) | Permalink
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LIFE'S GOOD, BIRTHDAY PARTIES AND SURGERY THIS WEEK
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Nov 16, 2007 06:36pm (EST)
Life has been rather peaceful lately, please note I did not use the word "quite" because that is one thing it is most definitely not ! Sebastian has became a rambling chatter box who pops out words like dang and dink every so often.
Yesterday we were coming home from the store and chatting with Sebastian in the back seat, we tried 'ho,ho,ho' with him - his interpretation - "no,no,no"
His therapies are going well , PT is very happy with his progress, although we are needing to zero in on certain things. When Sebastian walks he looks like a drunken Frankenstein so we need to focus on squatting/peddling or anything to flex those little knees. After searching for days we finally found a really neat trike for him that has a 5 point harness ( still fine tuning that balance ) , a nice size bucket in back ( any medical necessities ) a handle for mommy to push and a way to lock the front wheel so that the "backseat driver" has control.
The only two downsides are no straps on the petals to hold his feet on but we are a crafty bunch around here and I have a long lived love affair with Velcro and Gorilla Glue so that is easy enough to modify for his needs - then there is the price !  $100.00 !! I guess really that isn't so bad considering it able to be used until the kid is four but we just aren't able to plunk down that kind of change on a whim, it is frustration but we are watching it closely in hopes of the price dropping.
Last week Sebastian attended his first group birthday party ! A friend of mine's son turned 4 and had a party at a local kid's party place and Sebastian had a blast ! It was the first time he had been around more than one other kid and I was a bit nervous to see how he reacted to them and how they would received him. He ran (or tried to, lol) played, got pushed around , banged on instruments , ate cake, played with Lego's, ate some cake, had toys yanked away , ate some cake , flirted and ate a bit more cake. It was so nice to see him look and be treated like a "normal" kid.
Later this week Sebastian has another broching and if all goes well we may have a 23 hour hospital stay to monitor him for possible decann. As always I am being caustiously optimistic but who knows, maybe the next pics I post will be of a 'nekkid neck'.
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Posted by Shylent | Comments: (633) | Permalink
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MUSEUMS, COSTUM CONTESTS AND DRINKING OUT OF STRAWS !
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Oct 25, 2007 07:45am (EST)
Sebastian has been a busy little man since my last entry ! His walking is getting better everyday , he is even starting to prefer that as his main mode of transportation, aside from being carried of course, lol.
Last week Sebastian had another play date with his cousin John , we took the boy the the local Children's museum , they had a blast. We learned about textiles (okay the boys had fun pushing the wooden block pieces around), playing pretend (Sebastian drove an airplane) and that a size 6 Chuck holds approximately 2 small purple boat loads of water....
A few days ago our beloved faux biting vampire was bestowed a 2nd prize in Best Costume in a costume contest at a local state park Halloween event. Oh, such honors, lol, but he did received a small bag, a nice size pumpkin and a cute little ribbon to add to him memory box.
Also, he has learned to drink of out a straw , and is rather proud of it. Sebastian loves juice boxes , unfortunately due to the amount of sugar and the response of his digestive system (you can figure that one out if you want, lol) he can only have one a day. My mom said she saw some milks on boxes but they one the regular shelf as opposed the the dairy coolers- that freaks me out a bit.. lol
Sebastian has lately began to have really odd fears:
Radio antennas - On the 18th we had tornado warnings and DH pulled the radio antenna up to tune in a station and the kid freaked out, he put the antenna down , the kid stopped.
Green Eggs and Ham - The page when the guy is contemplating eating the egg- * JUST* that page though, and he knows when it is coming up or you skip it.
Octagons - Yeah , I know ... Not octagons, just the one in his shape book. Again he knows when he page is coming up or if you skip it.
Cows- I have no ideal ... Just doesn't like the sound I guess
Sheep - That is the whole " Noooot " sheep ordeal I blogged about a few months ago.
Bumble Balls or anything that vibrates
Also he is not a big fan of Cookie Monster and he is a bit leery of Elmo.
Plus a certain train toy we purchased for him that if he even sees any part associated with it ( ie makes no noise or lights up) he gets upset.
( I don't get it either , lol )
Monday we went to the eye Dr and thankfully Sebastian's eyes haven't gotten any worse , the Dr even said there is a chance for improvement but also a chance he will need surgery sometime in the future. We don't have to go back for 4 months so all is pretty good there .
Next month we have another bronch scheduled and a 23 hr stay to check out the sleeping while capped issue. Tonight , driving home Sebastian dosed off while capped and his sat flitted down to the low 90's but only dropped to 89 momentarily then went back to 94% so that is encouraging.
We are nervous though because by going in for the 23 hour observation then we are potentially exposing Sebastian to RSV without his first Synagis shot of the season ! He will placed on the respiratory floor so the nurses working with him will be the exact someones working with the RSV kiddos. 
Due to insurance issues the order for his Synagis didn't even began being processed until Oct 16th so needless to say I do not think he will be getting his shot within the first few weeks of Nov... Going to try to contact the Ped and see who they are using this year and attempt to contact them and see what we can swing . Worth a shot I guess...
Playing at water table
At the Eye Dr
How I found my son in bed one night
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Posted by Shylent | Comments: (4) | Permalink
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 Archives
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I hate when he does that. 
Here it is November 21st and my former preemie with a tracheostomy has not a a shot ! AUGH ! I am livid ! I spent all of today calling between pharmacies, insurance and pediatricians and STILL I haven't got a rock solid answer. He has been approved but apparently no one know WHO is suppose to provide the meds. If I had a spare $450 to cover the 30% co-pay ( the resubmit it to our other insurance ... blah blah blah etc) it would already be resolved but seeing as how that is highly unlikely to find that much money in the couch cushions that won't be happening.. 
