Posts from the ‘Stressed/Exhausted’ Category

The preferred parent

Children go through life in phases. Some phases are obvious and a given; the infant phase and toddler phase, for instance. Other phases are unique; which television shows they are hooked on or if they go through an orange food phase. The other two phases every child is likely to bounce between for many years are the Mommy Phase and the Daddy Phase.

The Mommy Phase is when the infant, toddler or child is about all things mommy. Mother and child appear joined at the hip. Where Mommy goes; so does the child. Mommy is the only one who is acceptable in life for fulfilling any of the day-to-day needs. Hungry? Ask mommy. Wet or dirty and in need of a diaper change? Find mommy. Tired? Only mommy will do. It isn’t that I’m any better at any of those things than Daddy. It’s just that I’m the preferred parent at that point in time.

The Daddy Phase is the exact same phase only the roles are reversed. Rather than being the preferred parent for every action, outing and need; Rob is. For all things in life, during the Daddy Phase, only he will do. No substitutions accepted.

While you would think that I would be grateful for a Daddy Phase because it allows a certain amount of extra “me time”; it doesn’t always work out that way. There is something rather insulting with a sense of abandonment about the Daddy Phase. Suddenly, overnight at times, it seems as if I am no longer good enough. The food I prepare is sub-par. The bedtime stories I’ve chosen aren’t long enough or funny enough. Sometimes it seems the things I say and do…well, the Boys seem to take them offensively. It’s heartbreaking to watch them prefers someone else, even if that “someone else” happens to be Rob.

Unfortunately, there aren’t many ways to get over things when I’m not the chosen parent. It’s simply one of those things I just have to move past. Unless of course I’d rather share my feelings with another mother, who is likely to understand. Either way, there really isn’t much I can do about the phase.

I know I should recognize the unseen benefit and enjoy the little bit of extra time I am being offered, while it lasts; especially since I always seem to be complaining about how little “me time” I’ve allowed. Plus, I know that all too quickly, I am going to find myself the object of obsession and soon I’ll be wishing for that extra “me time”. But for now, it’s hard.

It hurts me to hear Emmett John scream “Da” and “Daddy” over and over again. Knowing that he doesn’t say “Ma” or “Mommy”. He doesn’t call me anything. I know I shouldn’t allow it to get to me this way. I know it’s a phase and “This too shall pass.” But damnit, it does!

And now that I’ve vented and whined and had my little pitty party, I think I’ll go try and pay the bills with some blogging related stuff.

New Poll! Opinions greatly appreciated!

I’ve added a poll to the right side of my blog asking for your thoughts and opinions about adding blog posts written for cash to my daily updates etc. It’s a good opportunity for me to help out my family and help pay the mounting bills for all things new and special that the boys are needing (like more diapers for Emmett John since he’s refusing to wear any of the diapers unless they have Cookie Monster on them!). I just want to make sure it’s the right thing for my blog because it’s become one of my babies as well.

So if you would be so kind as to offer up your opinions; I’d really appreciate it. =)

Homeward Bound!

All survived! =)

No needles. No abnormalities on the x-ray or EKG.

Gavin was fantastic! And we’re going home! =D

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

Slowly moving forward

He’s been taken for his chest x-ray, which Gavin found super cool because they were able to show him the x-ray images.

Then they came and performed his EKG, which Gavin didn’t mind because he could keep watching Total Drama Island. He wasn’t too keen on the stickers though.

The nurse didn’t say anything about them so I don’t know where we stand on their results.

I’ll update more later, when I have more to give.

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

Please pray!

Gavin has been having chest pain the past few days. I’ve been trying to get him in with Dr. VK but until them but in the mean time, Rob and I decided to take him to the local Children’s ER.

That’s where we are now. Waiting in his room. While the ER as a whole begins a “Code Yellow” disaster drill. Great timing, huh?

As it stands at 740P his stats are:

BP: 97/65
Temp: 36.6C
Pulse Ox: 98%
Pulse: 80bpm
Weight: 75.6lb

I’ll update as I know more.

Please keep Gavin in your prayers. Oh, and the doctor and the nurses and Rob and I because this has the potential to be a very combative evening.

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

My thoughts and feelings

Gavin’s appointment with Dr.R left me with a migraine I didn’t have going into the appointment, still in a Fibro-flare, and feeling completely emotionally and mentally drained. Narcolepsy aside, it’s been a struggle to keep my eyes open ever since I got home. I wasn’t expecting things to be so exhausting. I’ll know better next time.

I don’t like the idea of Gavin being on Lithium; however, if it’s what necessary to help Gavin and hopefully make our lives a little calmer, then we’ve gotta do what we’ve gotta do.

The Seroquel scares the pants off me; I’m not going to lie. The fact that it’s very possible for the facial tics to be permanent – that’s the last thing Gavin needs, is something else to overcome.

I worry about the long-term side effects that we may not be aware of, of all of the medications Gavin is on currently and has been on in the past.

I feel horrible saying this but I wish this were happening to someone else’s baby, not mine. Not just because it’s exhausting to parent a child with special needs such as Gavin’s but also because I can’t imagine what it must be like for him. Never knowing for sure if the voices he hears talking to him are real or in his head. I’ve always had compassion for John Nash, his story about life with schizophrenia is portrayed in the movie “A Beautiful Mind”, when he asks a student at the end of the movie if she can see a gentleman who is talking to him. Now that I have a child with much the same problem and concern; it is a whole different kind of compassion.

The appointment

I’m sitting here while Dr. R talks to Gavin. Trying to hide behind the invisible wall that excludes me from the conversation since I’m “Mom” and therefore embarrassing. This is where we are so far:

  • He has tremors that are caused by the Seroquel. They are not familial tremors like I have; I asked.
  • He’s talking about the voices now. He hears the voices through his ears. There are a lot of them. Dr. R agrees with Pattie that he is 100% hearing the voices, which makes this a form of psychosis.
  • He isn’t sleeping very well at night. He’s been waking up at midnight, 2AM, 4AM and 5AM when he just stays awake. At 5AM he begins to perform his shows.
  • The facial tics are called tardive dyscanesia. They are an independent medical thing, completely separate from everything else. They can become permanent but Gavin’s are not permanent now.
  • At this moment in time Gavin’s is diagnosed with Bipolar – Mania with Psychosis. Dr. R said that there is a spectrum (I’ve learned to hate spectrums.) of Bipolar and schizophrenia. It looks something like this (imagine it’s on a line):

BipolarBipolar w/Mania & PsychosisSchizoaffective DisorderSchizophrenia

Right now, Gavin falls on the Bipolar & Bipolar w/Mania & Psychosis side, which basically means he’s so manic that he’s had a psychotic break of sorts. Dr. R said it is impossible to diagnose Schizoaffective Disorder in a child Gavin’s age. Although it may become evident in the future that is what he in fact has. Only time will tell.

  • The anti-psychotic is making the facial tics worse and will likely continue to do so. However, it is absolutely a necessary evil now. We need to bring him out of the Manic mood that he is currently in and the only way to accomplish that goal. Once he is no longer manic and psychotic it is our hope that the Lithium (I’m getting there.) will be able to stabilize him and his moods.
  • His mouth movements – baring his teeth while he talks, stretching his lips out while he talks to expose his gums etc. are the tardive dyscanesia and not stimming behaviors with the Autism. Having the tardive dyscanesia complicate the issues as a whole because it makes choosing an anti-psychotic much more difficult. Ideally we would be able to find one that works and doesn’t cause the tardive dyscanesia since it can eventually become permanent; however, that isn’t the case and we’re forced to work with what we’ve got.
  • The wiggling of his fingers and flapping of his arms are part of the Autism. Dr. R said he has become anxious to the point of developing more stimming behaviors.
  • We are rapidly running out of antipsychotics to try, which combined with his tardive dyscanesia makes things even more difficult. In the end, if all other antipsychotics fail there is one left. It’s called Clozapine (or Clozaril) and Dr. R said it is “the Atom Bomb of antipsychotics”. The problem with Clozapine is that it is associated with agranulocytosis, which is the turning/killing off of the white blood cells. When Europe began using it they didn’t keep track of the patients white blood cell count and 14 or 15 patients died. Ever since the US approved it, it has been the most tightly controlled medication of all the medications available in the US. A patient is only given a 7 day supply at a time at first because they must have a blood draw to check their white blood cell count. Only after the pharmacy receives the results of the blood draw will they dispense the next 7 days supply. Eventually the blood draws are spaced at 2 weeks, 3 weeks and finally 4 weeks for the duration of the usage. Thankfully, Dr. R said we are not at a point where this medication is necessary.

And finally, here is the plan going forward for now:

  1. We are slowly weaning Gavin off the Depakote and eventually removing it altogether.
  2. Starting today we are increasing his Seroquel.
  3. Adding Lithium to replace the Depakote.
  4. Adding Cogentin, which is supposed to help with the facial tics.

That’s the entire appointment from start to finish. We start changing his medications around and then return to see Dr. R again next Wednesday. Here’s to hoping this works because I’d really like to avoid the Clozapine if at all possible.