Our Unexpected Journey: Flying solo

Well, it's our first week alone in lets just say a LONG time! We were amazingly blessed to have both our mom's take long turns coming out to help us, both our Dad's for a time too and my Aunt Lisa. It was such a blessing to have each of them here and all the help they gave us. We couldn't have made it without them!
But we are happy to say we've mostly through our first week with just the three of us and doing pretty well! And as much as we love all of you who came to stay it's been nice to have a little time just us before we hit it hard again with round two when our sweet little boy joins and we're helpless once again:)
This week on Tuesday Gracie had her 6th spinal tap! I've never even had one in my entire life so it's almost unbelievable to me that at 19 months she's already had 6! Next Tuesday we have number 7 and I like a good check off list so I'm definately checking off each treatment and I'm always very happy to have another one over with. One of the pros of Gracie's age I think is that she is so innocent, that the day before I'm always dreading the fasting and the treatments and she is thankfully able to enjoy the day as if nothing was coming. Of course this comes with a downside when she's unpleasantly surprised to be at the clinic again with nurses coming at her again. I always wish I could just sit down and explain to her what's happening because she gets so upset and scared at times and it's often because she doesn't understand what they are doing.
This Tuesday went really well overall. I had a very nice friend from the ward come with me and it's always nice to have the extra set of hands. Gracie did great on the drive and with the fast, the bad part came when they had to access the port for the first time. The bandage and steri strip was still in place from her surgery and if there's anything she hates it's having her bandages/dressings taken off even with the special stuff they have to help it come off easily. She screamed and screamed until she was sweating pretty good so when they tried to put the numbing cream on prior to accessing her the dressing they tried to cover the cream with wouldn't stick with all the sweat. Of course putting another dressing on (it's basically like plastic wrap) was very upsetting so after the 2nd dressing we decided not to try another. They even brought out an older patient to try to show her and explain that it didn't hurt, but she wasn't having it. I'm hoping next week will go better if I put the cream on at home before we leave...although I don't think she'll be very happy with me when I put it on. Todd has started asking her where her port is and she seems to know where it is now, she points to her chest in the area where her port is.
She was a CHAMP with vitals they got her blood pressure without even a peep I couldn't believe when a number came up so quickly and she hadn't cried at all, because it usually is so upsetting and takes forever then comes up with an error b/c she's screaming so hard. I'm hoping she's adjusting to it and it can become less traumatic for her over time. She did GREAT with the spinal tap and the anesthesia nurse was in love with her. She wanted her to wake up so she could see how cute she was again. Of course she was giving everyone stickers before and then after for the first time she was happy and funny instead of cranky and mad. It made it so much better for everyone. I always feel bad when she gets out so upset, and I'm happy to see it's possible to know be upset after each sedation. Of course her post sedation treat was ready and waiting for her. It's become tradition, she gets her much desired Cup-O-Noodles after each sedation!
Her levels still look great and her stats for this week were:

Weight: 31 lbs

WBC: 7.0

Platelets: 374,000

Hemoglobin: 10.8

ANC: around 3.3

Here's the new view from my front window! Hard to beat I must say! Gracie still can't wait to spend all night with her Dad when he gets home...and it looks like he enjoys it quite a bit too! I'm a lucky mama!