March 8, 2011

Felt so much better on Monday. The sun was up and we had a great clinic appointment. We decided to switch Grayson's Hickman out for a port. Thank you to everyone who sent information and experiences with ports v. Hickman’s. They can do it at the same time as the bone marrow but they had to switch the day so now his surgery and bone marrow aspirate will actually be on March 22. They said we should still go home that weekend.

Grayson also gets to stop his Ambizone infusions. This was his last IV med so we no longer have to infuse anything at home except for our daily flushes. He does however need to have an IVIG infusion which will be four hours long on Friday. Not looking forward to that clinic visit. He is much more mobile now and the space is so tiny so I will have to get creative on ways to keep him busy during those four hours. If you have any ideas on how to keep a one year old stationary for 4 hours please send them my way.

Grayson had a tough physical therapy appointment today. He was tired and fussy and cried through every exercise. Our PT said it is partly the age because now that he's a big 1 year old he wants to control everything. Is that all it takes is a year to become completely like his mother ;)

I have met so many families lately and talked to so many people that have similar stories of life threatening illnesses. Of course most of these new friends I met at Hopkins so I guess that isn't that astonishing. However, most of the kids that are in clinic with us are in much worse shape than Grayson. My heart just aches for these babes that are undergoing chemo for years and years and having constant surgeries and all sorts of complications. We met Faith a few weeks back. A 4 year old little girl who was diagnosed in September with B-Cell ALL and has already had brain surgery, several rounds of chemo and is now going to undergo a bone marrow transplant. He baby sister is a 100% donor match. Her mom is military and from what I can tell the Dad is not in the picture. Faith is just so sweet. She is very shy but lets me hold her look-a-like baby dolls that have shaved heads like her. Please pray for Faith and her mom and sister who are in for such a bumpy road. I can just look around that clinic and know how lucky and blessed we are to have Grayson doing as well as he today. Seeing your kid get sick like this is without a doubt life changing but without faith it can be life shattering.

One last prayer request: A friend of my sister's had a baby at Hopkins a few days after Grayson was admitted for his BMT. Her baby is still there in the PICU and has undergone 2 or 3 open heart surgeries before 12 weeks of age. They live on the eastern shore and have 3 others kids back home and are traveling back and forth to be with their son who is appropriately named Theodore Rambo! PICU life is nowhere near as cozy as we were on the Oncology floor so please pray for Baby Rambo, his mom and dad and siblings. If you would like to read his story his mom, Amanda has a blog for him. http://rambosrampages.blogspot.com/

We are all too familiar with Hopkins PICU. I am so thankful Grayson was never sick enough to go there. I am not sure if I mentioned this before but when our son Gavin was 4 weeks old we discovered a serious heart condition called SVT and we were in the Hopkins PICU for a week unsure if our new baby was going to live. Of course we know now that the doctors and nurses that saved his life actually saved two!