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Thursday, January 10, 2008

Child #5 The REAL Baby!

Fast forward another 5 yrs and now we have Sebastian. Another little man to steal my heart. This one was a hairy monster though...still is! Hair on his back, on his arms, TONS of hair on his head, only one of my kids to be born with hair, and COMBABLE hair! Hair everywhere! But he was a keeper.

He, too, was born full term, over 7 lbs and did great for the first few months of life. Was chubby, beautiful, smiling, LAUGHING, so cute!

At about 6 months he got a nasty little upper respiratory thing..landed him in the ER and on a nebulizer for awhile. His nasty cough seemed to take forever to go away, and he was very lethargic and sickly for a long time.

At first we thought it was just him being sick, taking awhile to get over it. But as time went on he never seemed to be that happy, smiling laughing baby. We could occasionally coax a smile out of him, but even that started to fail. He wasn't gaining weight and wasn't DOING much of anything.

Eventually I brought up our concerns to the pediatrician, that he wasn't meeting some developmental milestones  (I had waited and waited...but at 8 mo he wasn't sitting  up, whereas at 4 months he was strong enough to do so with help) That started our liason with Nevada Early Intervention Services.

However, he still wasn't acting HAPPY. He was always a smallish baby, but now REALLY small and not thriving.

Eventually I took him back to the pediatrician and told her I think he needs to be admitted. He was and stayed in the hospital for 3 weeks. This was just at the end of August.

It's been a rough road, one we're still on, looking for answers. Being that this is the 2nd child, presenting with many of the same problems, they started looking at metabolic disorders and mitochondrial defects IMMEDIATELY.

One of the first tests run showed that sure enough, Sebastian was highly acidodic. Further analyzing, results came back weeks later, showed his methylmalonic levels were high. This pointed towards what we were suspecting, a metabolic disorder.

Here he is at his worst..because his body was in such a sad state he had a horrible reaction to a drug..and it almost killed him

During his stay, we did a lot of addressing the immediate problems...he has an oral sensitivity and won't let ANYTHING in his mouth, he had low and floppy muscle tone. He had LOTS of therapy..every day 2 different therapists, sometimes each 2 x a day. He needed a central line, g-tube placement and blood and plasma transfusions.

Here's little lovely on the upswing..about 2 weeks into our hospital stay:

After combatting most of the major immediate health issues with Sebastian, we were released with ongoing therapy and an appointment with a Genetics specialist at UCLA.

To date, Sebastian has a gtube which is his only source of nutrition.He had been breastfed but recently even backed away from my nipple in his mouth...his oral sensitivity is crazy!  However, at the hospital one of the nurses got him to suck on a pacifier and he is hardly ever without it...totally crazy! It's about the only thing that goes in his mouth!

He receives speech therapy, occupational therapy (fine motor skills) and physical therapy all once a week. Luckily, they come to the home..otherwise life would be miserable carting everyone around! This is the least disruptive. Then, we also follow up with Nevada Early Intervention services, so they have a feeding team, PT, and nutritionist that all come out also.

These appointments, along with follow-up dr appointments pretty much guarentee we are busy 3-5 times a week with little fellow! Throw in Elias' speech, gymnastics, Awanas and brian's activities...achh!!!! I live by my appointment book!

As far as his health today...he gets 3 feeds a day + an all night drip (on his feeding pump), he's learning to crawl..can really scoot around on his butt very well!  He's happy, laughing and so much fun! He's on a supplement called Carnitine, and since he's not eating yet we don't have to worry about his diet.

So..both of them are happy and on the paths to health!  We try to limit viruses/germs around them, as they can trigger their bodies into shutting down, and we balance this with actually going out! We're that family that always asks "Has anyone recently been sick in your house?"

While we may never get a definitive diagnosis, we know that it is virus induced and that they get acidodic and their bodies can't metabolize certain things correctly. In their case it looks like protein, so we limit that also.

It's all part of life. If we weren't "heavy" into therapy, we'd be "heavy" into cop-op, or gardening, or lighthouses of something!  This is just the season to be busy with Sebastian! We'll move on and be busy with something more fun soon :)

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