Fatigue Hits Us...

It's day #2 at NIH and we are tired already. Tara is doing a really good job with everything...she is my little trooper. This morning we had pre-anesthesia where we answered some questions about Tara and signed a consent form for tomorrows sedation. We then went to the physical therapist where Tara got to "play" for her appointment...she really enjoyed it. She got to climb up and down stairs, play with a hula hoop, balls, and 'run' across the room with the PT. The PT thought that Tara did really well and commented on how well Tara "plans" things before she does them, which is rare at her age. She seemed impressed at our base-line appointment. 

Our next appointment was audiology. Tara's left ear isn't working with the machines. They say that it doesn't mean she can't hear out of it, there may be fluid. We will find out tomorrow when we meet with the ENT. Her right ear passed with flying colors. 

We came back to eat lunch with our moms and Brooke and headed back around 1:30pm for the photo shoot. Brooke ended up coming with us...I think she is starting to feel left out or is missing us as we go away so much without her. Anyways...the photo shoot was so fun...Tara was such a ham. She posed and kept saying cheese for the photographer. 

Our next and last appointment for the day was at Dermatology. Tara was super tired and fell asleep on Steve as he walked her to the appointment. The wait for the appointment was about 45 minutes to an hour, which let Tara take a little nap....long for us, but a well-needed nap for Tara.  Brooke did well and she got some attention coming with us. 

We headed for home in hopes to go visit some museums in DC...however, my mom found out that they all close around 5:30pm so we didn't make it and we probaly won't make it at all this week, which is a bummer since we are so close to the awesome city. 

Anyways, my request is for prayers for tomorrow...Tara is going to go thru a lot. Our first stop will be at the ENT and then we will be going to the Pediatric Day Hospital where she will be sedated for the MRI of the brain, eyes, ears and they will be taking some more blood as well. After she wakes up from that she will need to 'try' to stay flat on her back for 2 hours. We then will learn how to do injections. So this will not be a fun day. 

Tara's rash has been really bad this week, which is good for the doctors to see. I asked that we get copies of the pictures that were taken today because I'm hoping that in a couple of days we will never see it again. I heard this drug, Anakinra, is 'awesome and unbelievable' from the dermatologist. As much as I hate to poke my little girl everyday I have to keep in mind that it will make her healthy. Please pray for strength for me and Steve as we learn how to do this....

Until tomorrow...