Wednesday, January 30, 2008
We also finally got results back regarding the Sanfilippo Syndrome test that was sent a couple of months ago. He was tested for type 3C, which came back normal. However, the tests did show that his cell activity isn't completely normal, and his MPS level in his urine is still abnormal. So we will continue to try to diagnose exactly what type of MPS disease he has. Tomorrow bloodwork will be sent for type 3B. Unfortunately each test has to be sent to the US, and takes weeks for results to come back. Although in the short term, this diagnosis likely won't make much of a difference, but in the long term, it would be very helpful to know.
Tuesday, January 29, 2008
Friday, January 25, 2008
Thursday, January 24, 2008
Unfortunately, our surgeon who orders Noah's TPN was in emergency surgery, so she was unable to be there. That meant some of our questions went unanswered. However, we do have a new plan to try to work Noah off the TPN basics. Starting today, I will try to increase his GJ feeds by 1mL/hr. So we went up to 16mL/hr today and I will leave him at this for a week. If all is well (not too much stomach drainage or diarrhea), then we will move up another mL next week. If we can get him to at least 25, then we can stop the basics again.
Tuesday, January 22, 2008
We have Noah's TPN clinic tomorrow afternoon and then therapy on Thursday. Still bitterly cold here...
Thursday, January 17, 2008
Monday, January 14, 2008
It's still hard to believe that we were able to go and that everything worked out so well. Our goal is to someday get back there again.
We are continuing to battle constant colds, but as one of our doctors said, "a cold a month is average" so I guess this is pretty normal. They just hit Noah so much harder though and he ends up with alot of asthmatic symptoms. He doesn't sleep well at night either when he is coughing and stuffy, which can get pretty frustrating, especially when nothing comforts him. The good news is that the Septra and Omegaven seem to be boosting his immune system enough to keep these colds from developing into pneumonia.
Noah is getting better and better at saying "mama". Melts my heart into mush...
Wednesday, January 09, 2008
Monday, January 07, 2008
Noah is a busy little guy lately. He's bum scooting everywhere these days and I am actually beginning to have to babyproof again! He loves the stairs, so we need to dig out the baby gate. And the kids toys are, of course much more fun, and Noah drives them crazy when he manages to get into their things. I snapped a few pictures after Noah discovered Joshua's car bin. Joshua was NOT impressed!
Thank you for all the meals so many of you have been providing us with. It has been SO helpful and I don't think we've eaten this well in a long time! We appreciate all the support so much.
Friday, January 04, 2008
The cousins waiting patiently for stockings!
Noah enjoying his favorite activity!
The girls in their new pink shirts from Granny.
The 24-25 was spent at home with the kids...
The 26-27 was spent at Brad's parents (until everything fell apart!!)...
Noah hauling around his dump truck of goodies.
Sledding! No, Noah is not out there!!
Wednesday, January 02, 2008
We have had to go backwards with Noah's tube feeds and restart him on the TPN basics again. He was just having too much stomach drainage and diarrhea. So his tube feed is now running at 15mL/hour of Tolerex and we are doing 12 hours of TPN overnight. This is unfortunate, as I thought perhaps we were on our way to getting off the TPN. But it just goes to show how dependent we really are on Noah's central line. The other issue we are dealing with again, despite the Omegaven lipids that were started, is that Noah's triglycerides are sky high. So we are now running lipids every other night rather than every night to see if that will help bring them back down. This means we can't get as many calories into him, but hopefully it will be easier on his body. We haven't had this issue in months, so I don't know what is going on. Hopefully this is not a sign of something brewing.
Tuesday, January 01, 2008
Thanks Hilda and Heather for spending part of the evening with us yesterday and for the goodies! It made New Years Eve much more bearable!!