Janessa had her ICARE appointment yesterday. It went very well! Janessa weighed 13lbs 14oz which is more than 2lbs from last months appointment which is very impressive! They were concerned that she wasn't gaining any weight from the TPN, which that is what it seemed like, she was 11lbs 5oz for three months straight! At November's appointment we got the okay to start feeding her rice, fruits, & veggies. It seems very coincidental that as soon as we started feeding Janessa a variety of food more often she started putting on the pounds! So they decided to increase her feeds and they would work with her lab work with me. So she eats her baby rice, and food three times a day, apple juice, and formula twice a day! So hopefully we will continue to put on the pounds!
Even though Janessa's bilirubin is down, her liver enzymes are still high, but I was ensured they are coming down, slowly but for sure, so our hope is to possibly get her off the liver list when she gets a bit older! As she ages she will have less TPN time and more feeding times which is great for her liver! We found the main problem to this problem awhile back with her lipids, and they put her on omegaven which has HELPED a lot!
Everybody is really impressed with Janessa. Her OT is amazed that she can feed herself, and her doctors are amazed she is doing so well despite this horrible prognosis of her condition(which I didn't believe from the start)!
Hopefully next month we will see more improvements and maybe finally cut her TPN down to 20 hours! But we shall see! Up next now is Christmas, which we are very happy Janessa is well(knock on wood), and we can enjoy it with our families!
Thanks for reading
Marybeth
Friday, December 17, 2010
Monday, December 13, 2010
December 13th 2010: A Snowy Snowy Day
We have been having crazy amounts of snow lately, it's been ridiculous, luckily Janessa is doing so well, and there has been no needed trips to Pittsburgh! She does have an appointment this Thursday, which we are anticipating will go well!
We haven't had many problems with Janessa except for frequent ostomy leaks. Her ostomy seems to leak every single day, and it's really irritating her skin! We have tried everything, so hopefully at children's thanks to a TPN friend of mine we will be able to talk to a stoma nurse about what we can do about her ostomy problems. Janessa's potassium keeps running on the low side as well. Even though they don't seemed concerned about it because it isn't at dangerous levels it's concerning to me a bit! Hopefully they won't let this go again until it's too late and she's in children's for an electrolyte imbalance.
I guess there isn't much else to say, she has been having weekly OT and PT meetings, and has doing very well with them. It's still just a mystery why Janessa hates standing on her feet, hopefully this problem will elevate itself soon! Thank you all for reading!
Marybeth
We haven't had many problems with Janessa except for frequent ostomy leaks. Her ostomy seems to leak every single day, and it's really irritating her skin! We have tried everything, so hopefully at children's thanks to a TPN friend of mine we will be able to talk to a stoma nurse about what we can do about her ostomy problems. Janessa's potassium keeps running on the low side as well. Even though they don't seemed concerned about it because it isn't at dangerous levels it's concerning to me a bit! Hopefully they won't let this go again until it's too late and she's in children's for an electrolyte imbalance.
I guess there isn't much else to say, she has been having weekly OT and PT meetings, and has doing very well with them. It's still just a mystery why Janessa hates standing on her feet, hopefully this problem will elevate itself soon! Thank you all for reading!
Marybeth
Thursday, December 2, 2010
December 2nd 2010: Slow, But Well
Well. Everything has been really quiet lately, and I must say I am very happy about that. Janessa yesterday had her first session with her occupational therapist to make sure her eating was up to par(This is for when she gets her transplant she'll know how to eat). The OT was very impressed with her oral skills. She was pretty surprised because most kids who don't eat lose the ability to do so, and don't want to. We keep Janessa on a great feeding schedule.
At 10 AM Janessa gets a formula bottle
At 2 PM Janessa gets rice cereal, she loves apple flavored
At 6 PM Janessa gets a fruit or veggies
At 10 PM Janessa gets another bottle.
She does really well with this, of course she gets really small amounts because she can't absorb, but she does love to eat, and we are so happy about this =]. We have a physical therapist coming in tomorrow to evaluate Janessa. She doesn't seem to want to stand on her feet or even attempt to sit up on her own, a common thing most 7 month old babies are doing. So hopefully we can get Janessa working on those things! We have been putting her in her bouncer as well, she seems to like that, and will bounce a little in it.
Other than that, things have been slow, and Janessa has been doing great. Happy & Healthy as can be!
At 10 AM Janessa gets a formula bottle
At 2 PM Janessa gets rice cereal, she loves apple flavored
At 6 PM Janessa gets a fruit or veggies
At 10 PM Janessa gets another bottle.
She does really well with this, of course she gets really small amounts because she can't absorb, but she does love to eat, and we are so happy about this =]. We have a physical therapist coming in tomorrow to evaluate Janessa. She doesn't seem to want to stand on her feet or even attempt to sit up on her own, a common thing most 7 month old babies are doing. So hopefully we can get Janessa working on those things! We have been putting her in her bouncer as well, she seems to like that, and will bounce a little in it.
Other than that, things have been slow, and Janessa has been doing great. Happy & Healthy as can be!
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