Addition and Subtraction, Day +66

Olivia is doing really well on the oral versions of the medications that she was receiving through IV. She's still eating well and she's making her own blood cells so she hasn't' received a blood or platelet transfusion in weeks. This means that it's time for us to go from a triple lumen to a single lumen catheter. Olivia will still have her "tubbie" for another month or so but on Tuesday they are going to do a very brief procedure in which they remove her current "tubbie" and insert a new "tubbie". This new "tubbie" will only have one access point as opposed to her current "tubbie" which has 3. There was a lot of discussion about putting in a port instead of going to a single "tubbie". A port would be a catheter under a layer of skin. It doesn't need as much maintenance as a "tubbie" and she'd be able to swim and bathe. Unfortunately I cannot access the port, we would need to go into the clinic so that a nurse or doctor could access the port. Since we just made the transition from IV to oral meds they are still very closely monitoring how much of the medication is in Olivia's system. So after some discussion the doctors think it's best that Olivia still have a "tubbie" for another couple of weeks. The process of going from a triple to a single is very simple and only takes a few minutes. Olivia won't have to be under general anesthesia, just put to sleep for a little bit. This is a subtraction we're really excited about!

Last week I met with Olivia's teachers here and we made some additions to her IEP. I am so glad that we were able to get her IEP completed before we moved here! It has made things much easier and if Olivia didn't already have on in place I know that we wouldn't be receiving the attention that we are. Duke Hospital has a relationship with Durham Public Schools and Durham actually operates a full service school "The Durham Hospital School" in Duke Hospital. I think that they do a pretty good job of working with kids who move here and are in the hospital for a while. Olivia's situation is difficult since she's so young and she hasn't been in school previously. It just seems to take them a while to get things rolling. We met to amend her IEP. We talked briefly about Olivia's strengths and weaknesses. She's gained quite a few skills since her previous IEP was written. Overall her fine motor skills have increased and her gross motor skills have decreased. While she was inpatient we worked a lot of things that we could do while she was in bed. We worked on colors, shapes, stacking, cutting so she does a great job at that stuff. Her vocabulary has increased and she's using sentences to express herself. That part of the conversation went well. Then they began the next phase of our meeting. They started with asking me what my lifetime educational goals were for Olivia. As soon as the words were out of their mouth my eyes had started to tear up. I took a deep breath and tried to look around the room. I accidentally made eye contact with the preschool teacher who has been working with Olivia. She saw me tearing up and then she started to tear up and then I lost it. The tears started to fall, the words started falling out of my mouth. I started rambling things about how pre-transplant we had learned that Olivia had a life expectancy of 10-15 years, that she's doing well now but we don't know how much the transplant has changed things. Then I started rambling on about how I want to challenge and support her. As I'm talking I'm getting so angry at myself for crying. Once again there's a situation where I'm supposed to be an advocate for Olivia and I am such a mess that I can't pull it together to make a coherent sentence. Why is it that all I can seem to do in these situations is cry. Of course I had lifelong educational goals for Olivia. Prior to her diagnosis they included things like college and graduate school, now I'm at a loss. I am scared to set goals that are unrealistic, setting us up for failure. I'm scared to set goals that are too easily attainable, thus not challenging her and helping her reach her full potential. Finally the occupational therapist said something about how the answer could be as simple as "encouraging her to continue to develop new skills". Whew! Another deep breath and we're able to continue but now without casualties. I am sure that now these people think I'm an emotional basket-case. Later on in the meeting they see my notebook (a really cute notebook that I made at snapfish that has family pictures all over the cover). One of the teachers innocently remarks that she likes it, oh I see a picture of a little boy, is that your son. And the tears begin again. I'd barely composed myself from the lifelong educational goals mess. Yes, I respond, that's my son, his name is Peter, he's living with my mom in Texas. I hope that this will be the end, I'm so ready to get out of this room. He's adorable the woman responds, how old is he. He's 6 months I respond on auto-pilot, wait no he's not, he's nine months old I correct myself. Oh, she says, you've missed so much. I cannot believe she's saying this. I'm crying again by this point, and so irritated with her insensitivity. Yes, I'm more than aware that I've missed 1/3 of my son's life. I feel like the minutes we've spent apart are forever ingrained on heart. Finally they begin closing the meeting with asking questions about Olivia's family and home life. Of course I am so emotional by this point I am sure that they're only asking about this stuff because they are sure that I'm an emotionally unstable and clearly I need some sort of assistance. Your husband is in the Army they read from something, is he here now. What? oh yes I respond, he's here now. Was he here for this? What are they talking about? Yes he was here when she was diagnosed. He was here for most of the important meeting with the doctors, he wasn't in town when her original IEP was written, he's been back and forth throughout the transplant process. They give me some strange looks. I've learned to talk about Mike's comings and goings with such detachment. I don't think I'm emotional about it at all. My husband comes and goes often, it's just a part of our lives. When will I ever get this emotional detachment about Olivia's diagnosis? When will it become a part of our family story, not a crisis we're dealing with? Thank goodness the meeting ends and I am able to escape. I'm glad the additions to the IEP are finalized. Olivia will work with a preschool teacher for 30-45 minutes 3 times a week. Initially her teacher will see us in clinic then she'll come to the apartment when Olivia doesn't have to go to clinic 3 times a week.


Finally, now to end on a much needed happy note! Here's a video of Olivia, our snack bandit that I got this morning as she was trying to sneak chips for breakfast. It's been a while since I've posted pictures of Olivia (I'm working on that this weekend) but just to warn you. Olivia's been on steroids for a while now so she has some very chubby cheeks. Some of her medications cause hair growth so she has some excessive eyebrows and a mustache. Just a warning. I love her giggle, she's become really funny lately and is so fun to be around. Enjoy.