Friday, January 29, 2010

The Weigh In


Today was the big weigh in at our doctor appointment. He weighed 19lbs 3 oz and gained almost a pound in a 2 1/2 weeks! So we were very happy, to say the least, as well as the doctor. As long as he continues to gain, we do not need to talk about feeding tubes!!! Thank goodness for some more good news!

Thursday, January 28, 2010

The Results Are In....

The sweat test results are in and he tested within the normal range so he does NOT have cystic fibrosis. Another test down and just as we thought....nothing! Thank god!

The Sweat Test


So we had the big sweat test yesterday. For those of you wondering, it consisted of them putting medicine on his arms to warm them and open the pores. Then, they put gauze on them to collect the sweat, and wrapped seran wrap around them. Then we had to bundle him up with tons of clothes and wait for 30 minutes for the sweat to collect. The poor baby screamed his brains out for a half an hour as I walked him around the hospital with a bright red face, as people stared at me like I was a child abuser, dressing him like that inside and ignoring his screaming. I had a little boy that said, "He's so annoying!" over and over again. I had to leave that room promptly before I unleashed all my stress and anger out on this little boy. So we took all his clothes off after the half hour and his head was drenched in sweat, so hopefully they collected enough on his arms for a result today or tomorrow. I'll keep you posted.

Wednesday, January 27, 2010

January 27, 2010



Today is Brayden's sweat test. The gastro thinks we should make sure he doesn't have cystic fibrosis (because he shows the digestive signs, but not all the breathing issues and infections). I think it's just another torture device for my poor child. I have to do it though because I will always worry and wonder if I should have done it. He was already tested twice for it in the newborn screening and came back negative...but they feel since it's non-invasive just go for it! I love these doctors!!! Anyway, wish us luck and
we should have the results in a day or two.

Friday, January 22, 2010


Ryan 3 1/2

and Brayden 11 months

Starting my blog...

OK, so I've decided to start a blog....just hard to figure out where to begin. Ryan is 3 1/2 and doing well. He is smart as a whip and says things that shock us everyday. He goes to preschool 2 times a week and I am always so excited when he tells me these great facts so I know he is learning so much at school. The other day, we were driving on Sunrise Highway and he says, "Look mommy, it's a canyon. Did you know that there are lots of canyons on the moon." I couldn't believe it- I was thinking he defintely had to learn that at school because they were learning about the planets. So I said, "did you learn that at school?" and his response as usual was,"No, I learned it on Mickey." So thanks Mickey Mouse Clubhouse for being a 2nd preschool for my son, yet again!

Brayden is also doing well...just to get all of you caught up on my little guy, he has a had a rough year of many many doctor appointments and intense therapy. He has not been diagnosed with anything up to this point, but a global developmental delay and possibly a cranial nerve dissinervation syndrome (which is basically when one or more of his nerves in the brain was underdeveloped or missing). We will find out more about the cranial nerves when he has another MRI when he is 2 to look at the brain stem to see if one or more of the nerves are damaged. At this time he receives pt 2 times a week, ot 2times a week, fedding therapy 2 times a week, vision therapy 1 time a week and speech 1 time a week. He also has a nutritionist that has been giving us ideas on how to fatten him up since he has had trouble gaining weight. I got my own scale toady and he gained about a half a pound since last week at the doctor so I am sooooo happy! Hopefully he will continue to eat. We have discovered he likes avocados and hummus! He is also sitting very well now which has taken a lot of work on his part. He works so hard everyday!!! He is a sweet and loveable little guy. You just can not STOP kissing him!