Tuesday, March 1, 2011

Snag update

Since radiology wasn't on hand at the hospital on sunday and we have the world's greatest surgeon - he just came in to replace lalo's gtube. We felt bad disrupting his day but he was okay with it because he was concerned after surgery about the size of the button he used. Since Lalo is a chunkier guy (yes weight gain is still an issue, and no, I don't get it either), he wanted to switch out for a bigger button in the next week. So, we were only at the hospital for about 3 hrs and got him all fixed up. We are going to try out hardest to stay out of the ER - overheard of at least 3 kids with fevers and 1 kid being asked to put on a gown because they suspected RSV. We used purell the whole time and tried to keep him covered in his carseat as much as possible. And his mommy is going to be extra special careful not to pull out his tube (Lalo years from now you are allowed to use this for as much ice cream as you want).

Lalo also had his assessment for the county's early intervention program. Three therapists came to spend a few hours with us. Overall, they were quite impressed by him. That seems to be the general consensus when we meet any new healthcare provider - he looks great in person, compared to what they were expecting based on his charts/history. It really reminds us how far he has come everytime we hear it. Anyways, in most categories he scored right on track or maybe a month behind. However, in the gross and fine motor skills he scored as a 1-2 month old. The fine motor skills are probably scored a little too low because he isn't using his right hand nearly as much as his left. Gross motor skills don't surprise us at all because he spent his first 4 months of life in a hospital bed and half of that time heavily sedated. We have made lots of progress at home in the last month and can't wait for him to recover a little more from surgery so we can go back to tummy time. The county plans to provide physical therapy once a week. As for speech therapy (they do feeding at this age) they are not recommending any therapy at this time until we get clearance from our GI doctor that it's okay to be working on. Our GI dr at our visit didn't even want to talk about oral feeds until we got his reflux under control. Which brings us to his reflux...

His reflux is still way out of control. We are still on continuous feeds and he is still vomiting throughout the day and night. His weight goes up and down just to make sure we are gaining more gray hairs. His weight on his home nurse's scale yesterday was 15 lbs 9 1/2 oz, which is down almost 4 oz from Friday. We have a weight check at his pediatrician tomorrow so we'll see what she says. We knew that the gtube surgery wasn't likely to help much with reflux, but we were hoping it would help a little. We have another 2 weeks before we see the GI dr, so hopefully if it's still as severe he will have some more suggestions for us.

Sent from my iPhone

3 comments:

Unknown said...

Lalito you are so precious and beautiful, and so very loved. Your family in the Bronx sends their love and their prayers.
Eres un amor....
Sandy

Anonymous said...

All of you continue to be in my thoughts and prayers. Lots of love, kisses, and prayers. Keep posting pics mom and dad - he's so precious!!!! Berna

Anonymous said...

You've done so well so far. It's so wonderful.

Love,
Aunt Kirsten