Proof I am living in an alternative reality

This is a bit of a cheeky rant, because, well, frankly I am perplexed.

First of all, thank you to everyone for their good thoughts about Ellie and Dave. Like I have said in the past - they really do help. And Dave's finger is healing and Ellie seems to have pulled through the seizure intact. That's not the rant part.

Here goes - OK - how do I say this? First I wanted to do a quiz to ask people what they think it meant when I wrote that Dave could not lift Ellie? Because, surprisingly it's not obvious to all. I am sure parents of other quadriplegic children would be saying, "well dah!". But even people close to us don't seem to really understand the implications of one of us, Dave or I, being injured such that we can not pick up our 34 pound quad cp, seizure prone, dysphasic, refluxy, lovely, active, curious, loving, g-tube dependent child.

Why do I think it's not obvious to all? Well because of this suggestion I got from a friend after they chided me for taking on the teaching job (like I needed more chiding, come live in my brain for 2 seconds) about how to deal with all the stress:

"You should go away for a few days on your own to chill out."

Sigh.

I guess it's really hard to put yourself in someone else's shoes. I have always felt bad when I have been unable to do this well. And, of course, there are people living in situations that no matter how hard I try to imagine and empathize I will never truly understand what it's like for them. This must be an example of that. I never thought I was one of those people that is so hard to empathize with. Didn't realize that for some, our day to day normal was so beyond the pail. Maybe I should describe things better here on the blog? Maybe it doesn't matter? What do you think?

Never a dull moment

OK, OK, I'll say it, UNCLE!

Yesterday morning Dave went very early to his hyperbaric oxygen treatment. Ellie had been up again at 3:47am until after 5am. She wanted to come down at 5 but I didn't let her because I was worried about how little sleep she was getting. I had fed her and changed her diaper and held her and tried to coax her back to sleep getting more and more frustrated. Finally she lay down and scooted her way close to me. And then alternatively had reached out to grab a fist full of my t-shirt and then push me away. I decided that maybe my presence was too distracting so I put the blanket on her and stood by her bed until she fell asleep. Around 8am I heard her peep. I was so tired I let her peep a few times. She does that - makes a sound and then you go in and she has turned over again on her side, thumb in mouth, asleep. But then I heard an odd gurgle and ran in there. She was seizing. She wouldn't look at me when I called. I tried a few times. Nothing. She wasn't in there. Her eyes deviated to the left. I turned her on her side and gave her the Diastat kit and called 911. I kept calling to her, telling her mama was here and that she was a brave girl and that it was all going to be ok. This was a weird seizure because she grabbed my finger and held on with her little fist. Her color was good but the gurgling did not stop. I was worried about her choking but her color stayed pink if not a bit pale.

The EMT's were there within 4 minutes. They must know me on the 911 call because I called and the woman on the line said something like what is the problem. I said, my daughter is having a seizure. She said, what's your address. I told her and she said, we're on our way. I hung up after the 15 seconds all that took and went back to Ellie. I have since put a phone right by her bed because running into my room to make that call was excruciating.

She seized for around 40 minutes. Luckily they didn't have to give her as many meds as they did last time - just a 2.5 more milligrams of Valium. Last time it was three doses of ativan and one of fosfentoyn or something like that. It's in the post I wrote about that over a year ago, under the seizures tab. For some reason I don't want to commit the gory details to long term memory.

We were home again by 5pm because after Ellie had slept off the Valium she perked up and it was good to be able to care for her at home.

I'm sad. She was so bright and had just gotten her energy back. Her depakote level was 68 which is in the therapeutic range but apparently not for Ellie. My hope that she would out grow the seizures any time soon is gone. Her dose is upped by 125 milligrams now so we will see how her energy level is after two weeks when she adjusts. If it is low I am going to talk to the neurologist about trying some other drug. God I HATE giving her all these drugs - but if I don't the consequences are just as bad. The neurologist thought her latest bout of no-sleep and sleep being off might be due to subliminal seizure like activity that had been going on.

Sigh.

I'm tired. I'm sorry. I feel like I am a bad mother. I feel like if I had gotten up with her at 5am like she had wanted versus trying to help her back to sleep maybe she would not have seized. I feel like my bad mood over Dave's finger and the stress of dealing with it all brought her seizure on. I feel bad that she has to be on a drug that deadens her brain activity at all. She's so brilliant and we got to see that more and more over the past couple of weeks. She seemed fine today if not tired. I worked hard to make sure she was hydrated and getting her meds at precisely the right time and not letting her nap too much in the day so that she can get on a regular sleep cycle. I have set my alarm for 6:30am so that even if she is up at 3:47am I will wake her early and get the sun on her face to try to reset her internal rhythms.

She was practicing her finger spelling today again. That made me happy. I always worry she will lose something after a seizure. Her latest words are Mama, Santa, Dada as well as signing the ASL numbers 1-5. She is working on the letter's B and I and R - the open hand ones are harder for her. She even went in her pony for about half the time she normally does but it's a start. She's such a little sweetie and she is growing fast. She has really taken a stretch over the last couple of months getting longer all the time. I wonder if her brain is changing too and more prone to these fire storms when she is in a growth spurt.

Not much more to say, am still feeling a bit numb.

Conclusions and Musings

Ellie is definitely not having the summer break I planned for her to have and I couldn't feel worse about it.  We were going to go swimming every other day, work on eating, the whole house was going to get labeled in a word extravaganza to beat the band and on and on...

All of that has been out the window because of me being stupid and signing up to teach a graduate course in my capacity as an organizational psychologist not realizing how much work that would mean for the month of August when Ellie is out of school. And then of course there is the matter of Dave mutilating his left index finger. Such a bummer on so many levels. 

The good news is, he had the reconstructive surgery on Tuesday and the doc was able to save most of his finger right down to most of the finger nail!  Way more than he expected. I can only attribute that to Dave's generally strong constitution and the hyperbaric that he did every day in the between time when we were waiting for the finger to "declare itself".  That word "declare" brings me right back to the NICU when we were waiting for Ellie to "declare" herself - translation - whether she would live or die and if she lived what sequalea would follow her injury. Other NICU parents may have heard that word too. I don't think I will ever get over that NICU experience when just one little word can take me back. (Did I mention this post was going to be a bit of a ramble...?)  Luckily insurance will pay for most or part of the Hyperbaric oxygen treatments which tells me the actuary science behind all insurance is smarter than doctors in this matter.  Of course the doctor did not believe it about the HBOT helping - but who cares. I know it helped. The bad news is he is in allot of pain still  - percocet dreams for him now.

It's weird seeing him all loopy on the drug but way better than him being in pain. It's so funny after it kicks in I can tell all is right with the world. He'll comment on the beauty of small things he doesn't usually notice. He's such a gentle soul and a sweet person. It's really cute.

The bad news is that he won't be able to lift Ellie for a long time which means he can't look after her - he can't be left alone with her. So just when my career is getting into a higher gear, not sure which gear, but definitely more active than in a long time, he is taken out of the carer picture. It's bad in the sense that when I am working on site with clients I will have to leave sometimes at 6am. What are we going to do?! Sigh. My head is bowed in awe of all single parents, especially those of children with extraordinary needs.  I am in the process of finding people to help us. Not easy finding folks with the ability to deal with a non verbal kid, cute as she is, with CP. Luckily it looks like there are some angels in my corner and I am interviewing a new person tomorrow. Timing really stinks or is really precise from a karmatic perspective - however you want to look for it. At the end of August seems to be when all the people who help us from time to time need  a break. 

So right now when I need to be putting my lectures together and firming up my syllabus, do I take advantage of the fact that Ellie finally went to bed before 10pm? No, of course not! I decide to procrastinate instead. I have all my notes and draft syllabi's in front of me. My computer is set to go with perfectly blank page waiting and ready to absorb the flotsam and jetsam from my mind. But alas, I am writing this post instead -- which is a true sign of the pressure. Procrastination is my MO. All this writing should get me going - right?. Oh and did I mention Ellie has decided that between 2am and 5am is the best time frame to wake up screaming and wanting me and then once the reflux subsides she waits for Dada to come in too. Which of course he doesn't because he's dreaming on percocet. 

It's karma for Dave taking care of me all last summer after my knee surgery. Maybe he needed a break? Maybe it was time for him to have an enforced rest?  Either way, things are crazy. I don't think I am taking this as gracefully as I could. Always something to work on in my own development and unfoldment as a very flawed human being. Yup. And I just heard Ellie now on the monitor tossing and turning. GREAT. I can tell right now it's going to be another hard night where she decides she doesn't want to sleep at all. Is this all about being stretched, what doesn't kill you makes you grow stronger stuff? Or is what doesn't kill me just going to continuously kick my ass for the next little while?

Obviously this post is a rant. Just wanted to check in and let you know we are all still here in various states of consciousness slipping up and down the survival scale as if it were some sort of amusement park ride. 

I truly hope the end of your summer is going way better than ours!

*Finger Healing: D-A-D-A

Sigh. Sometimes you just have to grin and bear it. On Saturday Dave severed the tip to the first joint of his left index finger. It was chaos, pain, a 911 call and more pain. Poor Dada! The next day after the hand surgeon told us there was not a "chance on this earth" of him keeping the tip, we took him to hyperbaric oxygen treatment in Randolph Mass. The Randolph folks opened up the center just for him, wonderful souls that they are. And he went really early on Monday morning. On Monday, the day of reckoning, the hand surgeon opened up the bandages and instead of the blackened necrotized tip of the finger there was healthy pink albeit mangled skin. It lives! Let the healing begin - which will take about 2 months or more in which time Dave can't lift Ellie.

Ellie, is cutting her "4 year molars" at age almost 6 - which makes sense since she was very late to get teeth at all. She is suffering the process and the chemistry is upset in her mouth such that she has a huge canker sore on the same side of her mouth on the cheek. It's so painful you can't even lightly brush the outside of her cheek with our her wincing and bursting out into howls of pain and then sobs. We have been trying to swab the area with Q-tips full of different concoctions from the doctors. But the swabbing alone is traumatizing her with her oral aversiveness. And she is driven absolutely crazy because she can't even comfort herself by chewing on her thumb.

As Dave's sister says, "Sleep is for the weak". And certainly not for me this week.

Anyone have experience with the molar thing yet? This one hit me by surprise. A year ago Ellie's dentist told us she had all her teeth. But maybe she doesn't think of molars as teeth - like the thumb is not a finger....whatever... help, yelp...any tips on remedies to speed up the healing of Ellie's canker sore will be much appreciated.

*Thanks to Rick for the title of this post, black humor and all. Also for the advice on the MSM for Dave which seems to have all been a part of the magic formula that is healing his finger!

Finger Spelling: M - A -M - A

Ellie never stops surprising me. This morning is one of those times where she just makes me so happy I tear up. She has had a few rough days. We are in food trials again and the lamb one is not going to well. More on that for another post. Needless to say, she has an upset stomach and has been feeling poorly. Last night Dave was in and out of her room to comfort her. (I got to sleep having done it the last time).

Recently Ellie had figured out how to make the letter S with her left hand. We were sitting on the couch and she was obsessed with one of the Maisy (Lucy Cousins) books and she put her thumb on the letter S and then made the sign for S. Of course I was thrilled and heaped on the praise and excitement.

The ASL letter S is a closed fist with your thumb crossing the other fingers. And she figured out how to do this on her own. So I realized when she showed me this last week that maybe she would be able to do the other closed hand letters - like A and then T, M, and N. So I showed her those. She was so interested she even let me help her make the hand positions. Since then she has been practicing making A, T, M, N and S and we added B too. The first time she tried to make the B (which is an open hand with the thumb crossing the palm) she could not get her hand open so she used her other hand to pull her fingers up. Does that just want to make you cry!? I did. She tries so hard and is so tenacious.

So add B to the finger spelled letters she can do. Every night when we sit on the couch she wants to show the brunette princess on her princess blanket these signs. I hold up the blanket so she can see the princess's face and she makes the signs and the princess is always really impressed. (This is our way of dong imaginary play - lots more to describe here about how we got there - but in another post).

Anyway - so it's been an amazing thing with her initiating all this finger spelling.

This morning after the rough night I hear Dave and Ellie on the monitor. Ellie wants to sit up and Dave puts her on his lap and Ellie starts finger spelling. I hear Dave vocalizing the letters she is making as she does it. I don't know why we do that - we just do - we lend her our voices to reiterate that we understand what she is doing, reading, now finger spelling. And I hear Dave say, "M - A - M - A. You spelled Mama!!! Mama is going to be so happy! You're my little genius!"

Yep, he called it right. Mama is very happy. When I picked her up this morning, she finger spelled M-A-M-A first thing. Sigh. I can always count on Ellie to burst my heart open in the space of seconds.