So Janessa had her monthly ICARE appointment today! There was surly more positives than negatives. Janessa is now 15 pounds, and a centimeter shy of 27 inches! It's incredible. They increased Janessa's food intake to 35mls, and if she does well to increase it to 40mls. She is also going to "try" a motility drug that will contract her stomach, and hopefully she will start moving some stuff in there! We will be trying it for 30 days to see if there are any side effects and what not. It's the first medicine she will ever take orally, I'm excited to see how this will go!
We will also be clamping her g tube through the night and see how well she does through the night. We are hoping this will all be a success.
There is one negative to all this, her hemoglobin is starting to drop, and is at a 8.8 so she might be in need of a blood transfusion soon :( we shall see how she does though within the next month.
So that was short, simple, and sweet! I'll update more eventually to tell you how this new motility drug is working for her.
Thursday, January 20, 2011
Thursday, January 13, 2011
January 13th 2011: Lovely Lovely
Well Janessa finished her antibiotic a few days ago, and has been doing great since then! We finally don't have to reuse catheters anymore! We get 200 a month now :) Us reusing her catheters is just a calling for a urinary infection. Which is really bad since she has a central line as well, if by chance it ever spread to her kidneys she would get a very blood infection, which is something we DON'T want. Luckily we found a great solution to the sterilization problems we were having.
Janessa has an Icare appointment on the 20th of this month. Her electrolytes have not needed any change, so hopefully we can increase her feeds even more! Right now Janessa gets between 5 - 7 ounces of food a day. Which is great for a kid who doesn't have any movement in her intestines. She is gaining weight and growing taller, she finally has made it to the 6-9 month clothing :) she is very tall for her being a TPN kid. We are also hoping we can decrease the 22 hours of TPN she is on as well! I guess we will find out all of this next Thursday.
Janessa also receives weekly Physical and Occupational therapies. We are able to cut the OT down to twice a month now since Janessa has very good oral skills, yesterday she drank from a straw from her honey bear bottle :). Janessa's physical stuff is coming along as well, she is still not wanting to stand on her feet, but she can finally sit unsupported for 20 seconds which is huge for her! This of course will continue to be weekly to make sure she keeps up with her physical milestones.
Just a cute little thing, Janessa started saying DADA yesterday, which was a first for her, she has been saying MAMA for awhile(I know it's backwards) but she finally got DADA down. :) We are so proud of our little munchkin!
Janessa has an Icare appointment on the 20th of this month. Her electrolytes have not needed any change, so hopefully we can increase her feeds even more! Right now Janessa gets between 5 - 7 ounces of food a day. Which is great for a kid who doesn't have any movement in her intestines. She is gaining weight and growing taller, she finally has made it to the 6-9 month clothing :) she is very tall for her being a TPN kid. We are also hoping we can decrease the 22 hours of TPN she is on as well! I guess we will find out all of this next Thursday.
Janessa also receives weekly Physical and Occupational therapies. We are able to cut the OT down to twice a month now since Janessa has very good oral skills, yesterday she drank from a straw from her honey bear bottle :). Janessa's physical stuff is coming along as well, she is still not wanting to stand on her feet, but she can finally sit unsupported for 20 seconds which is huge for her! This of course will continue to be weekly to make sure she keeps up with her physical milestones.
Just a cute little thing, Janessa started saying DADA yesterday, which was a first for her, she has been saying MAMA for awhile(I know it's backwards) but she finally got DADA down. :) We are so proud of our little munchkin!
Saturday, January 8, 2011
January 8th 2011: Eight Days After
Janessa recently has been diagnosed with a urinary tract infection, her first infection in her duration of life. She finished her final dosage of her antibiotic today, and on Monday will be returning to her pediatrician for another look at her urine. We are hoping everything will be crystal clear and she will remain free of any infections for a long long time.
There isn't much else to say for Janessa she is doing so very well. She has been feeding herself very well, sitting up unsupported on her own more often, and babbling more words with each day. We are so happy with how well Janessa is doing, and we hope to keep this streak up!
There isn't much else to say for Janessa she is doing so very well. She has been feeding herself very well, sitting up unsupported on her own more often, and babbling more words with each day. We are so happy with how well Janessa is doing, and we hope to keep this streak up!
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