If You Happen to Think About It...

Please say a prayer for my girl. She is really taking her grandmother's death very hard. The first few days were ok, but I think that the finality of death is starting to sink in. She is sad, and angry, and stressed! She is spending more and more of each day in tears of frustration and deep sadness. It hurts my heart to see her pain. So, if you think about it, please pray for her.

Pondering Life & Death....

So much has happened since my last update. It seems life has gotten in the way of blogging, which is not necessarily a bad thing... it's just, well, life.

October was a tough month in many ways, but overall it ended well. We made it past our one year anniversary of our last inpatient visit. That was reason to celebrate! Our trip to Maryland went very well and we are very thankful that we have NIH as one of our resources now. Mary was able to successfully complete getting blood work done, which is HUGE! The good news is that her lithium levels are right on target. The bad news is that her thyroid is very slow... i mean VERY slow! And it is probably due to the lithium. Boo! Thankfully there are good medications to regulate the thyroid without having to take her off of the lithium. We have already seen an improvement in her energy level since starting the synthroid. She continues to make progress in school, even with the thyroid issues which just goes to show how well this program is working. The pdoc was surprised that she could put 2 cognitive thoughts together with thyroid levels where they were, and yet she was making progress. Praise the Lord!!!

We were able to spend Thanksgiving with wonderful friends and had many moments of laughter and joy. We are so thankful for the great friends that God has put in our lives. They are always so supportive and encouraging. We are going to need that more than ever as we face the next few months... which leads to my pondering on death.

On Friday, November 25, 2011 my sweet mother-in-law went home to be with her savior. It was very unexpected and quite a shock to our whole family. God was merciful in that we were all able to go to the hospital to say goodbye to her and Mark was able to spend all day with her while she was still awake and alert. We are so thankful for her life and the influence that she had on each one of us. She was a prayer warrior. We know that she is rejoicing to see her husband again after almost 9 months of life on earth without him. We know that he was waiting eagerly to greet her as she arrived in heaven and has been busy showing her around the snow-making factory. There is evidence of that today as we are having an early snow here in Georgia. It is not much snow, not accumulating at all. But enough that my little boy came running in from recess to tell me that the snow was falling and had stuck to his jacket. He knew that grandpa was smiling and celebrating that his bride was with him again. At the same time, her death leaves quite a void to those of us left behind. Mary is taking it especially hard. She is sad and angry all at the same time. Life and death just do not make sense to her right now. Why is there suffering here on earth? Why did her grandparents have to die? She is grateful (as are we all) that her grandmother did not have to suffer, and knows that was better for her. But she wanted more time to say goodbye, to prepare, as if one can ever fully prepare for the death of a loved one. We would appreciate everyone's prayers as we navigate the next few months and try to help all of our kids process this in healthy ways.

A Long Overdue Update...

First, my apologies for not posting an update earlier. I know many of you have been praying for our time in Maryland and patiently waiting to hear the outcome.

Our trip to Maryland went off without a hitch. It was a great experience and much better than I had ever hoped it could be. Everyone was very kind and compassionate (which has not always been our experience with hospitals). The accommodations there are fabulous, a real kid's paradise. The plane ride there and back was great. And the testing that they did on Mary to see if she qualifies for their study confirmed her diagnosis... well, kind of confirmed her diagnosis. They did agree that she is bipolar, but instead of the severe bipolar 1 diagnosis that she has been given by our p-doc, they said she was a less severe bipolar 2. The reason they believe that she is bipolar 2 instead of bipolar 1 is the level of mania that they have seen documented and described by us. In their opinion, she is hypo-manic instead of full blown manic. I disagree with that part of the diagnosis. She does suffer from hypo-manic episodes and most of her cycling has been more hypo-manic than full blown manic. But, I think that is because we are hyper vigilant in tweaking her medications when we see the mania approaching. We call the doctor if there are more than 2 nights in a row with little or no sleep. We track everything and know what time of month/year to be extra careful. We have her in therapy every week to help her learn what her triggers are and catch it before it becomes full blown mania.

Regardless of that difference in opinion, Mary does qualify for being part of their research study and she would love to participate. The other kids have been invited to participate as well, being siblings of a bipolar child. So... we are headed back up to Maryland the middle of October. We are excited to be part of the study and hope that in the long run it will benefit Mary and others who suffer with this disorder. Unfortunately we won't be getting the testing results as we had originally hoped for. Her data becomes part of a pool of data that is combined to study a collective group of kids. We will still probably need to go ahead and contact the local school system to have a full psych eval done in the near future. But there are so many positives to participating that we are still going to go ahead with it.

Bethesda, Here We Come...

This past week, we got the call from NIMH (National Institute for Mental Health), inviting us to come to Bethesda for a one-day interview to see if Mary meets the criteria to participate in the study they are doing on bipolar disorder in children and how it affects their brain process. We are very excited about this possibility. It has taken quite a while to get to this point (several hour+ long phone interviews, NIMH playing phone tag with the p-doc, passing their initial assessment, answering a million questions about whether she is really bipolar or just chronically irritable, etc.), and the trip doesn't guarantee that we will get into the study. But we are excited about it just the same.

I tried to schedule the trip before school starts. Unfortunately that was not possible, so we will have to take a couple of days off. At least it will be before the end of August. NIMH is paying for us to fly to Bethesda on August 24th, the interview will take all day August 25th, and we will fly home on August 26th. Mary is really excited about flying on an airplane. She hasn't been in an airplane since she was 5. I hope that the excitement continues and doesn't turn to anxiety. After the interview, NIMH will make a final decision as to whether Mary meets all of their specific criteria for this study. If she does then they will invite us back for some extensive testing which will include brain imaging, psychological tests, etc. I still have some questions as to the extent of the testing and exactly what it will tell us. Hopefully this trip will answer some of those questions. We still need to do a full psychological evaluation to know where she is educationally with her learning disability. If that will be covered by the testing at NIMH then that would be wonderful. If not, then I need to start the process with the public school system. I am praying that the whole trip will be a good experience and that if the study is something that we should participate in, then God would make it abundantly clear.

Losing Momentum...

These past few weeks have had lots of ups and downs, but that is nothing new or different for our lives. We had a mostly good trip to WV. There were a couple of days that I thought we would have to bug out early and head for home, but then Mary settled in and the week ended up on a positive note. It was so great to be able to spend time with Mark and see the ministry in action there. We visited an old historic fort and homestead while we were there. On the way home we stopped at a nice place to walk around which overlooks the longest arch bridge in the world.

This week the kids attended a VBS at a local church (which also happens to be where their school is located). They had a blast. Mary was too old to be a VBS-er but she was a helper in the craft room. Noah was able to make a few new friends with kids he will be in school with this coming fall.

In between all the packing, unpacking, VBSing, etc., our school work has really taken a backseat. While the breaks from it have been nice, it has also reinforced to me the need for it. After taking the 2 weeks off for our trip to WV, the first few days back were filled with lots of weeping and wailing and gnashing of teeth. The information "lost" during that break was astounding. The struggle to get back into it made me wobble between being ready to give the whole thing up completely, and knowing that if it was this bad after just two weeks, how much information would be lost if it was the whole summer. I have to admit that I am losing momentum. The kids are winning the fight. I am weary and tired of fighting the battle that seems only to hold on to existing territory. We are not making any "progress". Mary is no closer to knowing her multiplication tables, and Noah's handwriting is still atrocious. Part of me just wants to say forget it. Maybe if I saw even a little glimmer of improvement I would be more motivated to continue the fight. But for tonight, I am tired!

One Step Forward, One Step Back...

When will I learn that you can't start a new med and change the dose of an existing med at the same time??? And yet that is exactly what I did this past weekend! We decided at her last p-doc appointment to raise the dose of Buspar and add in Rozerem to help her sleep better. She is definitely falling asleep faster (half an hour from the time she takes her medicine instead of 1 1/2 hours or more).

The last couple of days have brought increasing anxiety, irritability, and overall unrest. Today she has spent quite a bit of time telling me that her brain is rushing, rushing, rushing and won't stop. She was on the verge of meltdown most of the day and did meltdown a couple of times tonight. The only thing that I can think of that has changed is the meds, so we are taking a step back starting tomorrow. The other thing we are not sure about is whether these feelings are a side effect that will go away with time as her body adjusts to the medicine, or if it is something that will continue indefinitely, or if it is even caused by the medicine at all? Since we are not sure if it is the med increase or the new med that is possibly causing this change in her, we will drop the older med back down to what it was before the weekend. What complicates this further is that we are supposed to go see Mark in WV next week. I am really hoping to gain some stability back before we leave! If we can't, it will be an interesting week to say the least.

Some Answers to Your Prayers...

A huge thank you to everyone who has been praying for us over the past few weeks regarding bloodwork for my girl. No, we have not yet been successful in getting it done, but we have made some giant steps forward towards that goal. Many of you know that even the mention of having a needle come anywhere near Mary has been enough to send her into a complete meltdown, the effects of which would last for days or weeks. She has threatened to stop taking her medications if it was going to involve having blood drawn. She has spent many hours worrying about it and getting stuck on the fears that accompany those thoughts. Previously even the mention of a needle or the sight of blood would make her close in on herself and completely shut down. Well, this past week, we have not only been able to talk calmly and (mostly) rationally about the need to have this done in the near future (and not just once, but multiple times), but she has also agreed that she would be willing to work with a cognitive-behavioral therapist to help her conquer her fears. She is still very nervous and wants to cry when we talk about it, but she doesn't cry, which is so huge! A few months ago talking about it at the p-doc's office sent her into a crying, yelling fit, resulting in her telling the p-doc that she hates her and that she thinks the p-doc is the worst doc in the whole world. This last visit, Mary actually brought up the subject. Now, it was to tell the doctor that she did not want to talk about it, but it was still a step in the right direction. And of course the p-doc took the opportunity to talk about it a little bit and pointed out to Mary how much she was maturing and how proud she was of the fact that she was talking about it without crying.

So, for all of you out there praying for my girl, please keep it up!

Another cool way that I am seeing God answer prayers involves things that I didn't even know to ask people to be praying about. I love when God does that. He has the answers all planned out in advance and it seems that almost the moment it occurs to me that I need to be praying about this, boom, the answer is there. Anyway, I have been thinking a lot about the learning issues associated with bipolar disorder. Mary also has a learning disability so I have been wondering just how much of the learning issues are a result of the learning disability, how much is from the bipolar disorder, and how much is from the medications. It is all just such a soup pot in there! As I was talking to the p-doc this week about these thoughts, she recommended that we go ahead and get a full psychological test done. She has had two of them in the past, but the last one was in 2007 so it is time to pursue that again. Now, normally this is something that the public school would do for us (if Mary was still in the public school). They will still do it for us since Mary is still considered eligible to receive services from the school, but we are going to have to jump through a few hoops and the process won't even start until school is back in session in August. However, the p-doc also recommended looking into maybe going to a local college or checking with NIMH to see if they are doing any research protocols that would involve these types of tests (which if we had to pay for out of pocket would cost thousands of dollars!). Now, here's the cool part... are you ready... NIMH just happens to be doing a study on the brain function and course of illness in pediatric bipolar patients, and they are still recruiting participants. I have had several phone conversations with them and we are in the process of seeing if Mary fits their protocol for the study, but if it works out, it would be so great! She would receive all the tests that a school or private psychologist would do plus some, and it would not cost us a thing. AND... get this... it is a long term study so it would also provide these tests probably on a yearly basis to monitor her progress as she grows up. Of course it is not a sure thing. We do not know if we fit their protocol, or if they will accept us into the study. But the possibilities just give me goose bumps!