A Few Minor Blips But Still Doing Well

Amanda had a nice Christmas with her family and both sets of grandparents. She actually slept through most of the festivities and then really perked up on Christmas night. She had a great week enjoying her family and was quite active.

On Wednesday, she gave us a bit of a scare. She woke up Wednesday not at all herself and then began to vomit and kept it up. To make a long story shorter, she went to the local ER, was Mercy Flighted on a helicopter to Duke, had her shunt and pressure tested to make sure the shunt was working ok and is now back home. We were blessed that Grandmama and Grandpa Jack could meet her at the Duke ER (they had already left Wilmington to catch their flights in Raleigh). Parents are not allowed on the helicopter and we had to drive up separately. She had a very small subdural hematoma (not uncommon in kids with shunts) in the front of her brain so her activity is a little restricted for a while but they do not think the finding has any significance other than signaling that she might have been a little to active for her own good (the johnny jumper is no longer allowed). With respect to the vomiting issues, they think we should pursue investigating whether they relate to migraines (which evidently is not that uncommon for kids who have had similar surgeries).

We are blessed to be back home and preparing for the big New Year's Eve party that Katie has planned for the family. We are still thrilled with Amanda's progress and thrilled with what a big girl Katie is when her parents need to be away. By the way, Amanda has been saying "Mom" and "Dada" a lot this week. God Bless and Happy New Year!
Susan

Then and Now Pictures

Above is a picture from right after surgery compared to a recent picture. As you can see, Amanda is doing really well! She had a few minor bumps in the road after returning home (she had to be treated for c-difficile -- an intestinal bacteria that she picked up in the hospital -- and with that had a few days of vomiting and a couple weeks worth of diarrhea which have now both resolved) but since that time has been steadily progressing.
Her local neurologist is thrilled with her condition, as are her therapists. She is more advanced mentally than she is physically but she is progressing well each day on both fronts. She enjoys her therapies and is quite active. Right now she gets physical therapy (gross motor) twice per week and occupational therapy (fine motor) twice per week. She is starting to regain some of her sitting and standing skills as her trunk strength and control starts to come back. In January, she will start some educational/play based therapy, some speech therapy, and some vision therapy. She will also get access to some computer software and equipment that will allow her to touch the screen and change the images that she sees. It will be kind of like playing a video game.
She continues to make us laugh each day. She loves to give kisses and say "hi", and thinks it is funny to nod her head "no." She is extremely happy and loves to squeal and babble. She loves to jump in her johnny jumper. In fact, she is so wild in it now that we are going to have to put it in a wider doorway to keep her from hitting things. It is such a gift to see her so happy and healthy. God is good!
We are getting ready for Christmas. We are not yet in our new house but family is what makes the season special so we will have fun no matter where we are. Amanda and Katie are blessed to be able to spend Christmas with both sets of grandparents this year. Dan and I are looking forward to spending time with everyone too. It should be a great time for all.
We wish you all a Merry Christmas and a Happy New Year. We will keep posting to the Blog throughout the year. God Bless!
Susan