Thursday, March 26, 2009

Just milk please

Wow...about two weeks since the last update. So what's new?....

Well, Colby is off formula and 100% on milk now. He's also taking a multivitamin in his milk but is doing very well with it. Tracey and I are thankful that he's off the formula. It was a bit of a pain to it was about $50/week. He continues to eat like a champ, eating pretty much whatever we eat as long as his little front teeth and back gums can chew it.

He's still only a little over 20 pounds. But he was last weighed before he went onto milk and I think that's adding a little weight to him. His hair is finally starting to darken a bit and get a little longer.

As you can see, he's talking a bit more. He was totally into doing that "What does a lion say" and he's respond "rarrrrr", then "what does a snake say " to which, he'd reply "sssssss". But this seems to be old news as he rarely replies to either now. He's moved on to bigger and better things, like "baba" for bottle and "baby". It melts my heart to hear him ask for his bottle when he sees that Tracey or I are preparing it. he'll sit there and just keep saying "bababab baba bababa baba".

He's also got a bit of a dancer in him. Whenever there's any kind of music around, he'll immediately start waiving his arms. He LOVES music. He's just too cute!!!!

We continue to struggle to get him on his belly, to crawl or to stand. It's not that he can't, it's more that he doesn't want to. We have seen an increase in his arm and leg strength. So we'll keep it up and when he's ready, he'll surprise us all and start standing.

That's about the extent of things for now. I'll try not to let another 2 weeks go buy before I post another update.

Sunday, March 8, 2009

Doctor's Appointment

(Colby says "Ma...Ma...come on ma....let me have a turn!")

( I don't know who loves who more....)

Colby is doing fine. Well beyond his little bought with pneumonia now.

Colby had a routine doctors appointment last week. He weighs 20 pounds. Not quite as much as I'd hoped. But he was sick for a good couple days the week prior and wasn't drinking much. That all could have contributed to him not having gained that much weight.

All in all, the doctors were happy with his progress. They asked that we get an x-ray of Colby's hips to see if there's anything that could contribute to him not wanting to bear weight on his legs. He will stand, but only if you put his legs down, lock his knees and prop him up. He'll then "stand" there, until his legs buckle and down he goes. I've noticed that he is gaining strength, little by little.

We've been wondering if we can gradually take him off his formula and put him on regular milk. Given that he hadn't gained that much weight, we thought they'd keep him on the formula. But he's eating solid foods fine. Sometimes seeming to prefer finger food or spoon feed food to the bottle.

They suggested that Birth to Three come every week, not every other week. So we'll need to make that change.

Although Colby isn't crawling, is still small for his age, he's one VERY happy and content little guy! He's so quick to smile or laugh. He LOVES music and will "dance" with his hands in the air, waiving them about to just about any tune that's on TV or on the radio. It's funny because he'll stop whatever he's doing and start waiving his arms around, usually with a smile on his face.

We got a backpack off of E-Bay the other week. Colby seems to enjoy riding along in it. It was a warm weekend here in CT and yesterday we went down to the shore to go on a bald eagle watch. Colby really enjoyed his time outside. It's funny to think about a year ago when he started doing his "eye thing". He'd squint when he got out into the sunlight. Luckily that condition righted itself without any intervention or explanation and hasn't returned since. So it was very nice to have him outside, enjoying the sun and the fresh air. He didn't take his usual nap, but wasn't a bit cranky for the trip.

Wherever we go Colby draws attention. He'll smile and waive at people as they pass by. Many comment on his glasses and how cute he looks. I think some people notice his shunt and wonder it is. I've only had a couple people ask questions. I usually make the attempt to give a simple explanation to what it is. I think it helps people feel more comfortable, ask questions or share their stories at times.

I continue to feel so lucky that Colby is doing so well. I've told so many people that Tracey and I stated we wanted to make something good of an otherwise tough situation and that we'd empower Colby to do all that he's able to. The plan seems to be working. He's a very happy little boy. Delayed....yes. But showing progress in every way possible. And more than anything, he melts my heart with his soft little touch, cute smile and babbling little voice.

Sunday, March 1, 2009

Feelin' better

(Colby loves mirrors. He'll lean forward as if to kiss vain! LOL Or he'll lean one way or the other to change the angle of the reflection and see other things through the mirror. This picture was taken at the Black Rock Tavern yesterday. He was playing with grandma's mirror. Colby was on Tracey's lap and was looking up at me as I took his picture. )

(Colby with rosy cheeks from his fever. Even when he was cranky, he still had his moments of being happy and smiling)

(Here's momma trying to get some fluids into Colby via a syringe while he was sick.)

(Here's Birth to Three working with Colby on his ball. I have to laugh because it looks as if Colby is totally distracted by the picture...looking over towards mommy, legs lifted up, LOL)

Sometimes it's difficult when you have a child with a shunt. The signs of a shunt infection or malfunction (meaning it's not draining and there's pressure on the brain) are just about the same as when a child has the bug. So when Colby gets sick, we immediately start running down two routes. First, hoping that it's just a "normal" kid's sickness. And then the plan the neurosurgeon, pack an overnight bag, start monitoring fluid intake, veins on his head, etc in the event it's his shunt.

I think it was Tuesday afternoon, Colby started running a fever and becoming lethargic. He didn't want anything to drink and was very irritable. His fever started going well over 100 degrees, so we called his neurosurgeon. My mom was over and helped keep Colby comfortable and happy. She's great with him. Very long story short, Tracey spent a good 5 hours in the ER where they did X-rays of his chest and other tests to rule out a shunt infection. They sent Colby home at 3am Thursday morning stating it was just the bug. Later in the day on Thursday, the ER called back and said that upon further review, his X-ray showed some fluid in his lungs and said he might be getting pneumonia. So they prescribed an antibiotic and told us to keep a close eye on him. Almost immediately after taking his antibiotic, his condition started to improve. He would eat like a champ, but wouldn't take any fluids. Tracey was worried that Colby would become dehydrated so she patiently kept giving him syringes of pedialyte and Gatorade. At times Colby wasn't thrilled to be taking it, but it worked as Colby kept having wet diapers.

I had planned a bit of a high school reunion for Friday night. Colby's illness started to complicate things and I was wondering if I as going to be able to make it. But by Friday Colby was doing much better so we went ahead with our plans to go back to my home town, drop Colby and Hamilton off at my dads and head out to the reunion. Colby did great....and so did grandma and grandpa, taking good care of him. Even after he started feeling better, he still wanted nothing to do with either his bottle or drinking. However, just this morning he finally took a full bottle of formula like it was nothing. Our normal morning ritual is for me to get up with him in the morning. I'll get a bottle read. As that's heating I start my coffee brewing. Once the bottle is warmed, I go in, get Colby, come into the living room and set him down on his pillow with the bottle. I was psyched to see that he immediately took it from me and started drinking. Maybe it was a bit of the ol' routine that helped. Either way, I'm glad to say that he seems to be back to his happy, babbling self again. He'll stay on the antibiotics for a couple days.

All in all, Colby has been very lucky when it comes to colds or getting the flu. He's now technically 18 months and thus far hasn't had a really bad cold. This was his first bout with the bug. No ear infections or other complications. Sure, he's had more than enough with all his other complications, but we're still happy that he's been lucky with this aspect of his health.

His hair is growing little by little. It's getting long enough and dark enough now to start to help cover his scars and his shunt. Because the area around his shunt was shaved not that long ago, he has areas of longer hair...where it's never been cut, then areas of shorter hair where it has been trimmed for his various operations. You can't really tell though as his hair is so fine.

We've backed off of working with him while he's been sick, but we'll start helping him use his legs and starting to really push him using a sippy cup now that he's feeling better.