It’s been fairly quiet on the home front. We had a crazy few weeks, but we are settling into our new routine now. Casey is doing good with HBO. At first she would wake up a lot and shift around. Now that she is used to it she sleeps thru the entire session. She normally curls up on my arm and goes to sleep as soon as they start the pressure and then she wakes up as the pressure is released. It is a little hard on Tim. Instead of having the car every morning he is having to go in late or early so I can have it to get to and from the sessions. We go from 8-9 every day so if he works from home while Casey and I are at the session then he heads in as soon as we get home he can normally make it in a little after 9. On days he has to be there before Casey and I drop him off early, so we are making it work.
Casey’s PT is going well. Her new PT is doing great, we are so happy we changed. Casey is keeping her hands open a lot more, and her over all tone seems to be loosening up. Of course her legs are still stiff, but I think they are slowly getting a little better. Between PT and HBO we are hoping to see them loosen up more and more each week.
When Casey is in the HBO chamber, getting PT, riding in the car or bathing we have ti turn off her feeds. Being that she was already on the lowest end of healthy/safe calories I was a little concerned when we started HBO since that adds 5-6 hours a week. I talked with her GI doctor about increasing the calories by supplementing the formula, but I was still worried. On one of the groups Tim chats with online someone suggested we try doing bolus by gravity. I really thaught it was a dumb idea and I was sure it would not work. I agreed to try it, but was sure that she would not take much and it would be a waste of time. A few times after getting home from HBO during our first and second week I would give Casey about 30cc by gravity. To my surprise she would tak the full amount in minutes. Being that she was only on 22cc per hour on the 24×7 feed 30 in less than 20 minutes was a huge deal. Tim and I decided to test out the gravity theory this weekend. On Sunday I stopped her for about an hour to let her empty out the food she had in there. Then I hooked her up and gave her 20cc at a time up to a full 100cc in about 20 minutes. She didn’t reflux at all. I was so excited. At about 45-50cc she totally filled her diaper (a stinky one too). So shortly after finishing the 100 I moved her to chnage her diaper. Moving her and crunching up her tummy caused her to have some reflux, but nothing major. After we got her chnaged I put her back down to rest some and she did great. I waited a few hours then tried to do another bolus. She could not handle the second bolus at all. I felt horrible, after 10-15 sh estarted shooting food out her nose and cried like crazy. She filled a second diaper too. We got her calmed down and put her back on the 24×7. Now we are turning her off around 7 in the morning then at 9-9:30 (when we get back from HBO) I am giving her 75-80cc. Then between 10:30-11 I am putting her back on the pump at 24cc an hour. She is doing really good with this. I am hoping to keep her at 75-80 for this week, then next week go up to 85-90 then add on more each week. Hopefully by the end of her 8 weeks we will not only be over 100cc but I will be able to give her 2 or 3 of these during the course of a day. I am so excited that she is able to do these. This is such a HUGE step forward for her. I am not sure if it is a benefit from the HBO, if it is just her growing, or what, but what ever it is I am so happy.
My research project ended last week. I went in for the final portion (an MRI) on Thursday. I had never had one before. I knew they were loud, but it was not at all what I expected, I expected loud clanking noises, but it was more like an alarm was going off somewhere. It actually reminded me of bad zombie movies where there is always an alarm going off in the background. I just laid there and counted the beeps and time flew by. The first round was only 30 seconds, that one was nothing, then the secons was 8 minutes. I counted 253 beeps then they pulled me out. No one asked me to follow up with nuero or anything, so I guess I am tumor free.
For anyone that has not been to our apartment, it does not have a security door/lobby like many LA apartments. It is open to the street instead like a traditional town house. We have always had kids come by with school fundraisers looking for donations and stuff (that’s fine). We have had a few adults show up with less than creditable sounding organizations they want money for. When Tim is here with me I never thaught twice about these visitors. However now that I have Casey I am much more caution and aware of this type of thing. Some seeding looking guy came by today right after Casey’s PT left. I assumed it was the PT forgetting soemthing so I opened the doorand was very surprised to see this guy there. He was one of those that kept looking around me checking out the apartment and stuff. I wsa very uncomfortable with this so as soon as I closed (and locked) the door I called Tim at work and told him abut it and suggested that we get a peep hole for the door. I always knew I had a great husband and that Casey has a great dad, but now I am even more sure of this. I expected that maybe he would stop on his way home from work, or more likely go out this weekend to get a peep hole. However just an hour later I was sitting on the couch with Casey when Tim came in. He was worried about us and actually took time out to go get the peep hole shotly after we talked. He came in, put it in place then rushed back to work. I am so lucky to have such a caring, protective husband. Sometimes I really don’t know how I got so lucky.