Sunday, May 30, 2010

The First Full Week of Summer Break

As we got to the middle of last week, I realized that we had hit the "one month" mark since Mary's discharge from the hospital. I mentioned it to her and she looked at me a little strange. She asked me "Why would you celebrate something like that?". To me, looking back on the past month I am encouraged at the changes that we have seen. I am tentatively optimistic that maybe we have found the new cocktail of medications that will work well for Mary, at least for a time. I am thankful for the good days we have had together. So that is why I would celebrate.

The first full week of summer went better than I expected. I knew there would be some anxiety with the change of routine, the boredom, the dentist appointments and doctor appointments scheduled for the first part of the week. But, overall Mary handled it fairly well. There were some tense moments, especially when Noah pushes all the right buttons. But there were no major (or even minor) breakdowns. Praise the LORD!!!!!

Mary is very excited about going away to her first sleep-over camp. She has been asking to go to camp for years and it was never the right timing or the right cost. This year she found out about 4H camp through the school 4H program. She did all of her homework and wrote us a nice long letter about how much she wanted to go to camp. She included all the answers to questions she knew we would ask (what about medications, bugs, friends, handling the change in routine, frustrations, meltdowns, etc.). After several weeks of agonizing over the decision, and a couple of calls to the 4H coordinator to discuss Mary's unique situation and our fears, we did decide to let her go. The one thing we have told her all along though is that she has to be stable enough to handle it before she leaves or all deals are off and she is not going. We have also told her that she has to be able to hold it together when she gets home too, or this will be her first and last time going to camp for a long while. So far she is holding up her end of the bargain. And I realize that she can't totally control how she is when she comes back, there will be frustrations and meltdowns beyond her control, but if it continues as it has been, I think she will do fine.

As far as medications go, the new one that we started 3 weeks ago seems to be helping her a lot. So far we have not seen too many negative side effects. She has gained a few pounds, but her appetite is not voracious as it has been on other medications. I am hopeful that with plenty of exercise and activity this summer that gaining those few pounds will not become an issue. After she comes home from camp, we will start tapering off of some of the other medicines and see how she does. This will open the door for us to add in something else should the weight gain become more of a problem. The last thing we want to do is have her overmedicated or on some medicines that she really doesn't need. At the same time we don't want to switch things too much since what she is taking is working and helping ease the transitions. We don't want that anxiety to creep back in, especially right before starting middle school for the first time. It will be a balancing act as it always is.

Another big change this summer will be that fact that Mark is going to be out of town most of the summer. I am not stupid enough to post the dates he will be gone, and I even debated putting this out there for the world to see, but I covet your prayers during this time, both for us here at home, and for Mark as well. It will be challenging for all of us. I am so thankful that he is at least in the country so we will have daily contact with him. He is only a phone call or email away and if anything goes bump, he can be home in a matter of hours. I am so thankful for our church family here that are super supportive and always willing to lend a helping hand. It gives me a new appreciation for those who have loved ones serving in the military who are away for months or even years at a time. I know God will carry us through this time and He will use this in our lives to draw us closer to Him, and that is the ultimate goal of every situation He puts us in.

Monday, May 10, 2010

2 Weeks Out

The past 2 weeks have flown by. It has been full of end of the year school activities for everyone, and I am very thankful that we have not had to drive back and forth to Dunwoody every day as we originally thought we would have to do after Mary's release. I think overall there have been some positive changes, and we are trying to focus on those instead of the negatives. There are still meltdowns every few days, but the tone of them has changed. They are no longer the raging, angry, hate filled meltdowns. They seem to be triggered more by physical discomfort rather than emotional angst. And she does not want me to leave her when she is melting down, which is very unusual. Normally she is spewing such hatred and anger towards us that there is no choice but to walk out of the room.

To be honest, the first week having Mary home we felt very medically alone. We were not given much in the way of discharge instructions or things to be watching for on the new medication. We were told to follow up with our primary doctors, which is a great idea... however, there were no appointments available that week. The paperwork said that her cholesterol was elevated. Okay, but it also said that the lab work was done fasting at almost 11 AM. So, either they were wrong about the fasting part, or they did not feed my child until lunch time. If it was not fasting then the cholesterol results would not be accurate, and if they did not feed her before lunch time, that was not good either. I do want to give the hospital staff credit for what they tried to do for Mary. I am sure that our family was a real rarity for them. They are probably not used to patients who come from an intact family where the parents really WANT to be involved in the care of the child. We were not ones to just drop her off and say call us when she is fixed and we will come get her. Unfortunately for the staff though this means that we are much more likely to catch any mistakes that they make and for us to walk away saying that we could take better care of her at home. We learned a lot from this experience and know that we will carry that knowledge with us if we ever have to do that again.

Last week the feeling of being alone improved greatly. We were able to get in to see both the psychologist and the psychiatrist. And they confirmed what we already know, she is still manic and the cycling has not stopped or slowed down. We also received an email update from one of the bipolar child websites that we belong to that had some really interesting research in it. I won't go into all the details, but the short version is that they have been doing DNA research on children with bipolar disorder and they have been able to narrow down a more specific subtype of bipolar disorder in children. They are calling it the Fear of Harm (FOH) phenotype and in reading over it, Mary really fits that profile. If you are interested in reading more about this study and what they are finding here is a link to the page...

We printed out a copy of this web page and took it with us to the psychiatrist office. After meeting with Mary for a few minutes (in which time she saw that Mary was definitely manic or "exuberant" as Mary describes herself) and then talking with us and reading this information, we came up with a new plan for stabilizing Mary. Over the next few months we are going to be switching out most of her mood stabilizing medications. I approach this with fear and trembling, as we do anytime we change medications. I think part of my fear is that this one mood stabilizer has been so good for her. There was a night and day difference when she started it almost 3 years ago. She has had no negative side effects from this medication, so it doesn't interfere with her daily life. And it doesn't require lab work to monitor the medication levels in her blood. It worked so effectively that once we got her to a therapeutic dose, she was stable for over a year. We had our daughter back and life was good. So, I hesitate to change that, but I also have to face the facts that it is not as effective as it was and going up on the dosage did not make her more stable. I completely trust our doctor and I agree that we need to change things around. I just do it with a bit of hesitation if that makes sense.

A few things we are asking people to pray about...
1) that the new medication will take effect quickly and that there would be NO negative side effects.

2) that the transition coming up from school to summer break would be smooth. Transition is usually very hard for Mary and switching medications in the middle of it might not help things.

3) for wisdom for us as we navigate parenting her and the other kids.

4) that God would continue to soften our own hearts and encourage us to look outside of ourselves and love others well.