Friday, February 13, 2009

I'm back...

Hi all!

Sorry it's been a while... All's well here. We've finally had a few days where we can take Daxton out for a few minutes and he really seems to like it. We even took him to the lake one day and let him see the water and the geese... But the wind was blowing pretty hard so we kept him all wrapped in a blanket and didn't stay very long. We let Lola the Bulldog (Daxton's other mother) go so she could have her first swim of the year, and she fetched almost every stick within a 3 mile vicinity of the lake and nearly drowned on multiple occasions trying to fetch stumps and logs from the water... But she had fun, and she slept very well.

I say she's his other mother... Lola checks on Daxton when he cries, and frequently walks over just to lick the side of his face when he's lying on a mat on the floor asleep. She sometimes lies down next to him by his mat and lets him pet her nose. She runs to protect him when there are loud noises, and she checks on him during the night. It's very sweet if you don't mind your baby having a wet streak up the side of his head all the time, or that he's starting to bark.

We didn't have PT this week but we did have Early Intervention today, and our therapist is still just super excited about what Dax is doing. He's continuing to make progress with his balance while sitting and he's starting to try to hold a sippy cup with thickened juice... And he looooves it. You've never seen his so determined as when he's trying to get that cup in his mouth. It's very cute.

We had a cardiology appointment this morning and it was fantastic. His echo is continuing to show improvements, and his viagra schedule got changed from every 6 hours to every 8. Whoo-Hoo, no more getting up at night for drugs!!! Also, his ASD (the hole in his heart) is smaller than at last exam, which is a good sign. We're still going to do a cardiac cath, but the doctor is considering pushing it back to late March or even April, depending on how he looks next month after the change in viagra. Sooooo, that's good news! Oh, and btw, he weighed 15lbs, 7oz today...

When we got home today our nurse had to give Dax his Synagis (his monthly RSV shot)... He cried about 30 seconds; she cried a little longer. I'm not sure who's more pitiful on Synagis days...

Our nurse has also been assisting Dax to learn how to throw a "real" fit. (Thanks, Beth...) When he cries and pouts during his "hold me now or I'll give you a headache" moments, she'll show him how to thrash his legs and arms at the same time for effect. It was really cute at 1st, but now he's catching on... We're now adding "fit-pitching" to his long list of talents...

And as for our tiny friend, Baby Payton, she is now at Vanderbilt to see if she will be able to get a trach. Her mom reports she is doing better with her oxygen needs and the docs are still trying to figure out the best course of treatment. Please continue to pray fer her and her doctors.

On to my dad, he stayed at UAB until Thursday and apparently the docs weren't really able to tell them anything. Dad said it was fun... He was locked in a videotaped, bugged room for 3 days wearing 25 electrodes on his head while they flashed strobe lights, withheld sleep, and water-boarded him (according to him.) Not sure who was more miserable, him, or my mom who had to stay with him and listen to him complain ;P At any rate, he's home now and back to normal, whatever normal is. Please keep praying for him and for solutions to his medical issues. Here's a pic of him in his hospital finest...

And to jump for a moment onto that soapbox I love so much, without naming names or giving specifics, my son is smack-dab in the middle of what I feel to be unprofessional and unethical conduct by a doctor who, by the way, is not my son's doctor. Although I'm not 100% certain, it appears to me that a doctor, who, again, is not my son's doctor, has been attempting to persuade doctors who ARE my son's doctors to do tests that they have already explicitly told me that Dax does not need. I'm waiting to gather a few more details before I open this big fat gaping hole that is my mouth, but by the end of next week I am expecting answers and solutions or things will get really ugly... And I'm beginning to like ugly. It goes well with mother's instincts and pregnancy hormones... (and HIPPA violations and insurance fraud...) Please pray for guidance this week as we approach these issues.

Soapbox exited.

So that's all for now... I'm adding a short clip of Dax dancing... He's discovered he likes to shake his booty! He looks like he may have my rhythm right now; hopefully he'll develop his father's over time! (Notice he starts to cry when he thinks the nurse is going to let him sit back down...)


1 comment:

The Snyder's said...

Wow.. You are like me.. It has been a while since I have checked on everybody.. Daxton's video is too cute.. LOVE IT..
I am always praying for you guys... DR.'s sometimes don't know it all so I will be praying that God will reveal what DAX does or doesnot need..
God bless You Guy and Hope to see many more great reports..