The Medical Update

medsA few weeks back, Mickey and I took Daffy to the doctor to discuss her weight and her ADHD meds. (As you might recall, we fought to take her off a stimulant and get her onto a non-stimulant because of her weight loss and lack of appetite on the Vyvanse. Her PCP prescribed her 18mg of Strattera at the end of last summer.)  After the endless struggles over the past 4 months regarding homework and other tasks, as well as the teacher comments on her report card, it seemed that maybe an increase of the medication was in order. The PCP agreed and increased her dose to 40mg (the next dose up from 18mg). She has only been taking it about a week and a half, but it doesn’t seem to have any effect, which is really too bad. I know that drugs are not a miracle cure, but I was hoping that if Daffy could become more focused, it would be one less thing to argue about.

While at the PCP’s office, I also voiced my concerns about Daffy’s weight. She weighed 64 pounds when she moved here in January 2012. She weighed 64 pounds at the appointment. How can a child NOT grow in more than 2 years?? She had been in the 21st percentile when she moved in and is now in the 4th percentile. The doctor did not seem concerned at all, saying she will likely just be “small”, but I think there is something more. She has had control issues around food the entire time she has been here and she obsesses over being “skinny”… it wouldn’t take much for her to topple over to an eating disorder. The doctor gave her a lecture about trying new foods and eating healthy and she nodded but couldn’t remember what he said when he asked her to repeat it back. Time will tell if this will be a bigger problem than it already is… but at least I documented my concerns. I’m pretty used to being ignored by the “experts”… guess I’ll fry some other fish, so to speak, while I wait for this one to play out. We have a follow up in April, maybe he will care then?

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The Missing Social Studies Book & What Happened To The Baby?

The Missing Social Studies Book

The last few months I have posted only general updates. Last night it occurred to me that I am missing a critical factor by not blogging on a more regular basis and with details: DOCUMENTATION. I know how important documentation is. I’ve used the information I’ve documented on my blog numerous times as reference for dates and events. It’s time for me to push through the fact it’s uncomfortable and blog more frequently.

On, that note, the ongoing minor drama of the week is The Missing Social Studies Book! Daffy’s teacher emailed me Monday and said that we need to pay $80+ for the book. She said that Daffy had searched the school and couldn’t locate it and asked that we look at home. First of all, Daffy NEVER mentioned any missing book. I have no idea how long it’s been missing. Second, when I asked Daffy about it and said she should spend time looking, she said she had already looked at home but that she needed to check at school. I confronted her with the fact that contradicted what her teacher said and of course she shut down. Per usual. I’ve emailed the teacher about the book and indicated that I DO NOT want a new book issued. I do NOT have the money to be replacing books that Daffy loses. I have yet to hear back from the teacher and Daffy doesn’t seem to be spending any time looking. This doesn’t seem to bother Mickey at all. Maybe he has hidden money that I don’t know about.

I’m sure you are really here, though, to find out what happened to the baby? So last night a friend of mine came over. She comes over on a fairly regular basis and usually brings her littlest one, who is now 18 months. We hang out in the game room and her son usually is in the same area, sometimes going into the dining room which is up 2 steps from the game room. All of us (myself, Mickey, my friend, Tink, Tink’s friend and 9 month old baby and the 18 month old) were in the game room last night, except Daffy. She was in the dining room. The 18 month old wondered over and went into the dining room. Since my friend had already put up the dog bowls, there really wasn’t a lot of concern. Suddenly, there was an ear piercing scream. There was a split second where everyone froze and then my friend raced around the corner into the dining room. She found Daffy standing calmly next to the 18 month old. Daffy matter-of-factly stated “His fingers are jammed in the drawer.” My friend had to pry the drawer back open to get her son’s fingers out (which were already badly bruised) and scooped him up and brought him into the game room.

She walked in to dead silence. I think everyone had realized at the same time the likelihood of what Daffy had just done. Well, everyone except Mickey of course. He maintains that she was “emptying the trash” around another corner and into the kitchen. Since there is a window into the kitchen from the game room, I could clearly see that Daffy was NOT emptying the trash. Then Mickey decided that maybe Daffy WASN’T emptying the trash, but that she had been there but was totally calm because she didn’t know what to do. Ok, Mickey, smoke another one. No matter what Daffy’s behaviors, either she, Mickey or her therapist have an excuse to explain it away. It kind of reminds me when my mother was sick and not yet diagnosed with Lou Gehrig’s disease. She would say that the muscle weakness was from one thing and the cough from another and other symptoms from other things. As a nurse, she did not want to admit that all her symptoms together would ultimately diagnose her with a a fatal illness that would kill her in two year’s time. I think that Mickey and the therapist are in that same denial. If they excuse away each behavior (drawings, threats, suicidal and homicidal thoughts, etc) they don’t have to look at the reality of the problem we have on our hands and the fact that our mental health system is not equipped to help her.

WE NEED HELP. 

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Classic Daffy

Stock Photo from Wikipedia

Daffy had her physical last week and FINALLY received an ADHD diagnosis. She began medication last week and I am hopeful this will benefit her long term. As I told her last week during chat time, the medication wont change who she is, but should help her to feel like her head in not in a blender getting all mixed up all the time.

Earlier that same night she had written me this letter after she struggled to work on the thank you cards from her adoption gifts.

Mom,

I’m sorry if I did something wrong. I didn’t mean to. If I was The reason that I didn’t get it done when you came out of the shower was cause I was crying for one or two minutes then I went down stairs and yes I did get distracted. I saw the pickles on the counter so I took one. I know I should of asked but it was really tempting and I didn’t want to ask you cause you were in the shower and you wouldn’t of heard me and also you would of yell’d at me for not writing the letters so I made a bad choice then I went in the warm room and looked for a clipboard in there cause thats where they are then that took like 5 minutes then I found one and ran back upstairs. I looked for the notes and I thought I took them with me so I went back downstairs and looked for them for about 1 or 2 min. I went back upstairs and found them. There under my list of people I needed to write thank you notes to so by the time I took out a card, wrote Tracy on it you came out. I don’t know why I didn’t tell you the hole story but there it is. Oh also when you said go in your room I thought you meant go in your room and write the letters in there so I was confused. Sorry.

Love, Daffy Lastname

PS I’m crying cause I don’t know if I did something bad. PSS I still love you PPSS Can I still write my letters? PPSSS Can I still go to the Monster Mash? PPPSSS Write me back please.

Reading her letter made me DIZZY and confirmed for me exactly why the ADHD diagnosis and medication is appropriate for her.

So far the only drawback we have seen with the meds is how it affects her sleep schedule. Her bedtime is 7pm on school nights and 8pm on the weekends. Several nights last week, she was still awake at 11pm. Reports from the school are that she had a very good week. She reported herself that she felt like her brain had flip flopped from bad to focused. We have  seen a lot less difficulty in completely homework and a lot more focus on getting her room cleaned up. Overall, I feel like this is a good choice for her, I just need to decide if this is the right medication for her or if the issues with sleep are too much and we should try a different medication.

I am still planning to follow through on the nueropsych exam that her therapist has recommended because I think it will give us a lot more insight as to areas she needs the most help.

Wishes, Visits, Attachment & Testing

Sometimes I get so busy tweeting the little ins and outs of our daily lives, I forgot to come and blog.When nothing “major” is happening, it doesnt seem to warrant sitting down to write, but I know the little things are often more important so I am going to try to be better with posts! 🙂

A few things of note over the past few weeks:

  • Daffy asked her “Fairy Godmother” to grant her a wish… a picture of her and her biological Mom! Her Fairy Godmother was able to grant that wish and it was an amazing moment! Daffy opened the package, saw the picture and was completely overwhelmed with emotion. She told me later that night that she never cried from happiness before. She has been thrilled to show the picture to anyone who will look and is often analyzing it for little details and similarities.
  • Daffy saw Donald for the first time since being moved to the new residential treatment center. Daffy was “bored” within 5 minutes of being there and told me as we left later that she thought the place was “creepy.” I really didn’t know what to say because honestly, it IS creepy.
  • Donald’s former CW and I took him to lunch one day after a meeting last week. I was not happy when his new CW and our SW bailed on going because I had made it VERY clear that I did NOT want to go alone with him, but ultimately I ended up driving him both ways by myself. He scares me and he knows it. I try to put on my “game face” with him, but I know he can see right through it. (I have never really had much of a poker face, anyway.)
  • We received a copy of Donald’s Treatment Plan. I am happy that there are some very specific goals set for him over the course of the next year, but at the same time I feel like only Donald’s needs are being viewed. For example, he is currently physically attacking peers and staff an average of 1-2 times per day. The goal is for him to decrease the attacks by 90% before he moves in. Ummmmm, I am not really okay with my FAMILY (or anyone!) being attacked at a rate of even 10% of what he is currently engaging in. How can the state even ASK us to accept that???? If he were an adult, the state would pull my children for allowing them to be exposed to that kind of domestic violence.
  • Daffy has been sharing all sorts of things with me during our chats. She shared about the last visit she had with her mom and what it was like the day she was taken. Her therapist thinks these are signs that she is attaching. All this attachment talk boggles my mind. I mean, I GET what attachment is, I know why its important, I understand what causes issues in attachment, but what I dont understand is how I will know if Daffy is truly attached. I know *I* am attached to her…. the days that we thought she might be moved, I was paralyzed and physically sick over the thought of losing her. The more I search for answers, the more questions I find myself asking.
  • The process to get Daffy tested for ADHD is well underway. The school has sent home several forms for us to fill out and this morning I picked up additional forms from her pediatricians office for us and the school to fill out. We WILL get answers.
  • Tomorrow our SW and I will be meeting with a specialist to discuss Daffy’s sensory issues. While I dont think she has “major” issues, I feel she should be afforded the same close scrutiny that her brother received to best accomodate her needs. I feel she has been ignored for far too long already because her brother had the bigger (& more dangerous) issues. If one good thing can come from their separation right now, its the ability for us to focus on Daffy to allow us and her therapist to help her flourish.
  • Daffy got her new glasses. The eye doctor had told us the prescription was minimal and there was no need to get it filled unless she started getting headaches while reading. The school, however, wanted us to get the glasses indicating they couldnt test properly if she couldnt see,  so we got the glasses. I was SHOCKED when I tried them on to find how strong they are! She wasnt really thrilled to get them, saying they made her look like a “teacher”, but they seem to be growing on her, especially as people comment how “cute” she looks in them!
  • She had her first sleepover away from the house this weekend. The next day I asked if she forgot what I looked like since she didnt call and she said she was wondering if I was crying because I was missing her. I feel like the fact that I was on her mind was a good thing.
  • I have several trainings coming up in May. I love learning and I can’t wait!

-Minnie xo

[All names have (obviously) been changed to protect the privacy of our family.]