Archive for September, 2008

Movin and Shakin at the Park

September 22nd, 2008

The weather is finally cooling down some so we took Nora to her favorite park both days this weekend. On Saturday there were some people playing music in the gazebo, Nora loved it and danced for them. They even sang a little song for her “baby likes to dance, baby likes to dance, baby spins in circles, baby stomps her feet, baby likes to dance, baby likes to dance”. Who knows it might be the next #1 hit!!



September 16th, 2008

Nora weighed in at an all time high of 18lbs 4oz this morning! When she went off TPN back in April she was 17lbs 11oz, then lost about 3lbs during the two months she was off and she’s been working hard to get her weight back up ever since. She’s meeting the weight goals set by her GI docs to get her back in a healthy spot on the growth chart for her age. Our petite little princess is growing like a little weed from head to toe. She was in the same shoe size for the longest time and has now jumped right over a size 4 and is up to a 5. Good news for a girl who loves shoes!

Nora seems to have lost interest in potty training for the moment (and will race off the potty to go in her diaper) but she has fallen head over heals with Elmo from watching her Elmo’s Potty Time DVD. She’s a very good caretaker to Elmo, giving him lots of sweet hugs and even making sure he gets his teeth brushed….

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and takes his medicine. :)
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Yesterday’s port needle change was an exceptionally good day for two reasons, #1 Nora got to keep all of her pretty red blood because since she’s doing so well we only have to do labs every two weeks now instead of every week and #2 Nora’s wonderful nurse Virginia was back from a well deserved vacation. Since she was out of town last Monday a new nurse was sent to draw Nora’s labs. We had already planned to change Nora’s needle ourselves because we made the decision long ago to not let anyone access Nora’s port besides us or Virginia to lesson the chance of a line infection. We got this idea from Ellie Brogan’s parents who thankfully wrote about it on their blog and we thought it was very smart and decided to do the same, Thank You Brogans! Nora has only had one line infection since she was born and we think limiting who access her port has played a big part in her success. Sticking to this plan yesterday saved us a heart attack at the very least and saved Nora from what would have obviously been a very sloppy needle and dressing change. This was apparent just from having the nurse assist with the supplies and pulling the blood draw (that’s the only part that is required for the nurse to do, but is done after the new needle is in and the port is dressed). She pulled out an UNWRAPPED tegaderm from her bag and gave it to me with out batting an eye expecting me to put it over Nora’s port. Not only was it out of the wrapping but had obviously been out of the wrapping for a while and the backing to the adhesive looked dingy, not that we would have used it either way. Tegaderm comes in a sterile packaging… comes in a sterile package for a VERY important reason, as do all of the supplies used to cover a central line going straight into the bloodstream. Then she took the end cap that goes at the end of Nora’s port line out of the sterile packaging and palmed it in an ungloved hand planning on attaching it to Nora’s line after drawing the blood. Neither of these unsterile supplies were used on Nora. She was a very nice nurse but was far from clean enough for our comfort. Thankfully we are so very fortunate to have such a wonderful nurse like Virginia who loves Nora and gives us such peace of mind. Not only is she Nora’s nurse but we consider her part of our family.

I’ll wrap up this post with some pictures from Labor Day at Nora’s great grandmother Mama Tom’s house. Nora had such a fun time playing with her cousin Olivia. They picked a rose out in the yard and sniffed it until it was falling apart.

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