When Things Change…

The last week have been full of many unexpected changes. It has now been a whole month without Hope attacking me.  This week I realized it has also been a whole month of me not being Hope’s mother. That is not acceptable to me. We have two different agencies involved with out family to help Hope. We saw nobody from either of them this week and Hope’s behavior hasn’t been any better or any worse. She has still raged, she has been nasty, and she has been physical with GB. Monday the newest worker, Mary Poppins is coming to meet. I have scheduled 15 minutes for this meeting. I plan on telling her I see no benefits for our family in her visits and we will not be using her agency’s services any more.

I now have over 12 extra hours a week available, since Kenny chose to let go of this world and move on to the next. I have done a bit of crying, but overall I feel proud of him…the courage it took to deliberately say “I am ready to go”. I want to have that kind of courage when it is my time. I kept a regularly scheduled appointment with my cardiologist and heard that I have been upgraded from “cardiac insufficiency” to “heart failure”. I go to St. Peter’s this week for tests that, among other things, will measure the ejection rate of my heart. It explains my ongoing fatigue and how difficult it has been to get anything accomplished.

Divide and conquer techniques have made life easier for GB. The school, in its infinite wisdom, decided GB could skip recess in order to mainstream. I am not sure of their reasoning, since I spent Wednesday and Thursday with Kenny and only had time to remind them, via email, that they could not mainstream her without my permission and they did not have it. I meet with the school this week to figure out the next step.

GB is still heavier than is healthy because of the loxapine. I printed of two healthy eating charts, one for me and one for GB. I will take them to Stapl*s to get them laminated. I hope, by making us more aware of what we are putting in our bodies, we can improve our eating patterns. If we are both doing it, it might be easier on GB.

Kenny’s funeral is Tuesday. For many reasons I have avoided church in the last year+. I will be there Tuesday.

Warning

The Good 

Today is Friday. The week is almost over! My stitches are out, I can shower tomorrow, and I should be able to drive the five minutes to the CSE meeting on Monday. It seems like it has been a long time since I could put that much good news in one sentence 🙂


The Bad

Hope’s day was no better yesterday and she started right up this morning. A part of me is happy that she chose this week to completely fall apart, because the CSE on Monday will be so much easier. All of me wishes I knew WHY she was falling apart.


The Ugly

I had a phone conference with GB’s teacher last night, preparing for her CSE on Monday. Mr. Teacher told me that GB seems much brighter (ie smarter) the last month. In his opinion, the Risperdal and Invega were blunting her cognitively. My mind shattered and I couldn’t get it working again before the 30 minute conference was over. She has been on these medications for over 4 1/2 years. They kept the Bipolar stable, and not having psychotic breaks is extremely important to me. I thought I always balanced the cost and benefits (especially for GB) of the psychotropic drugs. Yet, I never even considered cognitive impairment.

What’s Left

The new medication she is on, Loxapine, is an old anti-psychotic. The possible side effects are scary; movement disorders, tics, and Neuroleptic Malignant Syndrome (NMS). I monitor side effects so carefully… and I still missed the cognitive blunting. How can I be sure I am not missing anything this time? Scary.

Walking ON Eggshells

GB is still dysregulated and manic. After trading a dozen emails back and forth, the psychiatrist and I agreed on a plan. I am not doing the happy dance. GB has been on every atypical antipsychotic currently available. The only two that stabilized her were risperdal and invega (A metabolite of risperdal). Unfortunately, Prolactin levels in the 40’s are not acceptable in an 8 year old girl. So we are left to try traditional anti psychotics. Tomorrow morning, GB starts on loxapine. It has black box warnings and we didn’t want to start her when we would have to rely on the school to monitor her. 

Parenting special needs children is often like this- there is no good solution. You are stuck between a rock and a hard place and have to chose between two lousy options- in this case, no treatment or risky nasty side effects. I made my choice and I am praying that God will wrap His arms around her.

Medication: A Mixed Bag

We took the girls to see the psychiatrist today. Both girls had high prolactin levels, but GB’s was through the roof again. We had to cut her Invega dose in half and now we pray that when it is tested again in three weeks, it will have gone down. If it doesn’t, she has to come off it. I am not sure that a 1/2 dose will maintain her stability. I dread having to take her off it completely.

Hope now carries a diagnosis of PTSD, along with RAD. The therapist at school  is focusing on her trauma during their sessions. The outside therapist is not. The shrink  told me today that I had to make sure that the outside therapist refocuses her therapy with  Hope and keeps in contact with the school therapist. She said ideally we would just use the school therapist, but since this is the third school therapist in the year we have had Hope, we would need to keep the outside therapist for consistency.

So far today, I am doing well with my attitude Challenge. This afternoon we have to take the hour ride back to Little City because it is Therapy Tuesday. Hope struggles with therapy. I am going to be very mindful of my attitude.