Sunday, December 7, 2008

Sunday, December 7, 2008

Message of the day (Thanks Charlie!): A couple of short quotes, the first confirms what many of us said regarding your mothering abilities--and you do have all the right instincts! "Follow your instincts. That's where true wisdom manifests itself." ~ Oprah Winfrey

And while the medical personnel want to help Mattie the following remains true so you and Pete need to follow your hearts! "There is no friendship, no love, like that of the parent for the child." ~ Henry Ward Beecher

I want to thank the Bentsen family for bringing us some holiday treats on saturday at the hospital. Mattie loves all the winter scene sparkle cups and I love the teas inside of them. In fact, I am drinking one as I type today's blog. The brownies and meringues were tasty and very festive. Thank you for bringing holiday cheer into our room yesterday. Also the ornaments for Mattie's tree are very special. We placed them on the Christmas tree in the hospital room. Thank you so much for thinking of us!

We also had a visit from Julia Lee (an RCC mom and friend) on saturday evening. She delivered us a delicious dinner (I loved the Korean beef, it was wonderful!) and her family also designed something very creative for Mattie. Julia is a social worker by training, and she has been giving Mattie's situation some serious thought. Julia and her children designed bone bugs out of playdoh. These bugs even had antennae and legs (made out of uncooked spaghetti). Julia brought Mattie this playdoh stamp, so he could grab the stamp and squash the bugs. Mattie was very intrigued by the bugs, and actually they were so adorable, we hated to squash them! But we did! Julia brought extra playdoh and Mattie went to town with the bug theme last night. He even designed two cockroaches (I have no idea why he is SO into cockroaches, because I can assure you his mother isn't!) to drive his lego car that he built with Peter and Liza (one of our favorite hospital volunteers). You can see a picture of Mattie's lego car with the cockroach drivers (got to love the red buggy eyes!) as well as a picture of Mattie in bed enjoying the Christmas lights Linda gave him. Thank you Julia for this creative and effective idea, I agree, I think it is important for Mattie to be reminded about what he accomplished and his role in the recovery process!

On Saturday evening, we had the delightful company of Liza. Some of you may recall my description of Liza from previous blog postings. Liza is a former professional ballet dancer. You can instantly tell she was a dancer by looking at her, but in addition to this, Liza has a beautiful voice. It is so sweet, and it reminds me of Billie Burke's voice in the Wizard of Oz (Glinda, the good witch). There is a lot of substance to Liza, she is warm, sensitive, caring, and bright. We were happy to hear that she just transferred from her graduate program at Columbia University to a program here at Georgetown. Mattie is very fond of her, and I can see the feelings are mutual. Liza spent several hours with us last night, building legos, chatting, having dinner with us, and helping to brighten Mattie's mood. Liza brought Mattie several gifts such as a wonderful planetarium (which we put batteries into and observed how it lit up the room with star formations), Lightning McQueen sox and tatoos. Our whole family is fond of Liza, after all, how can you not love a person who is so generous with her time and who loves playing with your son and seeing him smile? Below you will see a picture of Mattie and Liza together.

On saturday afternoon, I went home for about 6 hours. It was delightful to get away from the hospital. To be home and hear absolutely nothing. No beeping machines, no talking, no crying, NOTHING. While I was home, Peter was playing and entertaining Mattie. By the time I arrived back at the hospital, I could see Mattie was in a great and happy mood. He thoroughly enjoyed his "daddy time" and had a fun time building legos. Mattie only had one dosage of Ativan yesterday (which is the anti-anxiety medication Mattie has needed through his central line). Mattie is slowly getting used to taking the oral anti-anxiety medication in lieu of the ones through is central line, and Peter and I can clearly see it is making a huge difference. Mattie is now able to engage in talking and playing, he isn't so scared when others enter his room, and he doesn't appear as agitated and jumpy. So this is excellent news.

The real test to me though was how Mattie was going to do sleeping wise saturday night. Mattie, as usual went to bed late on saturday, around 1:30am. He fell asleep watching Scooby Doo. Many of the nurses tell me this sleep/wake cycle is not unusual for someone who spends a lot of time in a PICU. The PICU is fully on 24/7, and I think this definitely plays a role in confusing our brains and bodies when it comes to sleeping. Any case, Mattie was up a couple of times during the night, but was easily comforted and went back to sleep. A major difference from what we had been dealing with all week in the hospital. Peter was going to go home last night, but the mood in the room was so cheerful and happy, and Peter and Mattie really had a wonderful time bonding, so needless to say, Peter never left.

Mattie did an excellent job holding his own through this new chemo. The chemo ended on friday night and he is being hydrated this weekend to help flush things from his system. Technically I guess we could go home as soon as possible, but the doctors are aware of my hesitation. I want to make sure we have achieved the right balance of anxiety medication before we head home. In addition, I want the opportunity to chat with Mattie's psychiatrist on monday. So I am in no rush to run home, because in all reality the situation stinks whether we are home or in the hospital.

As I write this, I am home sitting in bed. I wanted the opportunity to come home again today, and Peter helped to make this happen. Peter ran out this morning from the hospital to buy more lego sets for Mattie. Mattie is just tearing into them and loves working on them. I actually consider them therapeutic, because he has to move his arms, hands, and fingers. In fact, Mattie has been holding out on us. He can easily use both hands and he can lift his arms and bend them at the elbow to touch his mouth. Lord knows when he learned to do this. But now I see I need to encourage him to do more things for himself. We are starting with feeding himself!

When I left the hospital today, Mattie and Peter were building and eating pasta. Mattie had a spaghetti request at 9pm on saturday. So we ordered from a nearby restaurant, and Mattie literally ate two plates full of pasta. The pasta frenzy continues today. Before I left though, Mattie and I took a stroll to the parent lounge and fed the fish in the tank. Mattie promised Linda he would do that this weekend, and he reminded me of his responsibility this morning!

We want to thank the Bower family for a wonderful chinese dinner and all the gifts you gave to Mattie. We look forward to watching the Bee Movie tonight and designing some knights in the book you gave us. As I sign off for the day, I want to thank all of you for your continued support, for reading the blog, for sending e-mails, mail, and gifts. All of your thoughts and prayers make a big difference. When I was chatting with Michelle Bower today, she said to me that she and others just don't know what to say to make this situation better. She is absolutely right, there is nothing that can be said. But the actions and commitment that all of you make to us each day is far better than any words you could say to us. Thank you! I end today's blog posting with a quote my friend and colleague, Camille, sent me.

"Courage comes and goes. Hold on for the next supply." ~ Vicki Baum