Past the Crisis, Having Fun and Salter-Harris Fractures

It’s been a long month and a wall to wall busy month… but it has been, all in all, a good month.

It is the next best thing to impossible to get any appointment with a psychiatrist that is “in network”.  Actually, there are very few that you can get an appointment with at all, it is extra hard to get an appointment with anyone that is in network.  No one that either takes or specializes in children and adolescents can “fit you in” to their ultra busy schedules in less than 50 days.  I guess if someone actually attempts to kill themselves they will be seen by the people in the hospital but you have to actually attempt it… if you are “ONLY” hurting yourself or only incredibly depressed ant TALKING about killing yourself… well… then… you don’t deserve to be helped by someone who can prescribe meds to help.

We could get in to the psychologist that helped Adam several years ago.  And we have gone to about 4 appointments.  Amandya wasn’t overly thrilled with the idea but she did go talk to him.

I’m not sure what did most to help, talking to her uncle can not be discounted as helping an amazing amount (he has been going to college to be a counselor)  but I’m thinking neither can the b6 and the lamictal.

Whatever has done it, she is pretty much back to being Amandya.  She laughs.  She smiles.  She talks about the future and the future being bright.

I can let the breath out that I’ve been holding.  We are past the crisis… even the psychologist has scaled way back on the appointments and said that she is past the point where we have to worry all the time.

She was promoted to Petty Officer 1st class on Monday of this week.

2 hours later, after she finished practicing with her unarmed drill team, she was horsing around with people from her team and fell.  She caught herself on her arm and now (according to the Urgent Care doctor) it looks like she has a Salter-Harris fracture in her right arm.  Right now, she is parading around with a bi-valve splint on.  This morning we go to have more x-rays at the orthopedist’s office and probably get a cast put on… she wants a purple cast.

Now she is coming to grips with all of the pain in the butt things that having your arm in a cast means… from getting dressed to writing (she’s right handed) to saluting commanding officers.  We have even thought about what happens if she seizes and hits herself with her cast if they put on on.

Yesterday was her neurologist appointment.  He didn’t talk an awful lot, he looked at the healing cuts on her arms (now not even scabs, just scars) and at her face.  He asked about the splint… asked if she was having fun when it happened (at which she rolled her eyes and said that she had been having run right up UNTIL it happened… WHEN it happened it wasn’t such a whole lot of fun).  He said he wasn’t happy that she hurt herself doing it, but that he was really happy that she was having fun and it sounded like life for her was getting better.  She actually smiled in his office.  Now, we don’t go back until December… unless something happens to cause us to have to make new appointments.

It has been quite a month… but it is looking much brighter now.  It has been 49 days since she has had a seizure… we may be on a better mix of meds now… lets hope so.

Sometimes it Feels Like Life Isn’t Fair… AKA… Being a Parent Sometimes Sucks

I can’t help her.  All I can do is sit helplessly and watch her seize and keep her from hitting her head on the door way and keep her from drowning in her own saliva.

It’s been a bad day.

And it was a reasonably decent weekend, too… we got homework caught up.  She was starting to find humor in the way that some people view her inability… (she isn’t supposed to walk by the coffee table any more… or go anywhere alone… or sit and watch the creek water flow (something that she loves… something that I can SO totally relate to)).  She was just starting to feel that life may be okay and that the 750 mg Keppra ER was having a desired effect.

It wasn’t.

I had my lavender scarf nearly done (I’m edging it in burgundy/teal/purple variegated yarn as just a little difference… yes pictures will be posted when it is done) to wear for International Purple Day (and for the Round Rock City Council Meeting on Thursday).

I was getting her print outs off the printer in the office so she had them for school.  I heard the seizure start.  I don’t know what is worse, hearing the sound of it starting or seeing her in the midst of one.

She was in her room… I found her laying on the floor rigid, her eyes rolled back in her head.  She had pillows and blankets on the floor where she was (she was cleaning her room) and she was laying on them.

All I can do is keep her from hurting herself on the doorway and feel helpless and almost useless… I can’t fix this.  I can’t make it any better.

Dr Reardon (who I called afterward) said to double her dose tonight (it’s been 4 weeks exactly… almost to the HOUR) since the last ones.  She was complaining that the light made her sick.  He said it was normal for a seizure to trigger a migraine… it does with her… with all the symptoms… tummy… head… vision… so I covered her window with sheets to cut more of the light out and she’s sleeping on the pillows and blankets on the floor.  The first dose of the Keppra is in her, the next one (the double up one) is due in a few hours.

Now, she is uber depressed again… she was starting to feel almost normal again… how do I convince her this really isn’t the end of the world?  How do I help her to understand that there has to be a purpose to this… How do I keep from feeling as helpless as she does.  I’m a mommy.  I’m supposed to be able to fix things.  Booboos are supposed to be fixed by a kiss and a hug and SOMETIMES a booboo-bunny with ice in it… or a frozen wash cloth (for bitten tongue or lip)… even when they both got older, ice packs and doctors were supposed to be my co-super-heros.  I feel like I’m failing her because I can’t fix this and I’m supposed to be able to fix it… I just am.

Neurologist Appointment and Possible Purple Day Converts

Well, it was an informative day.  Not overly eventful, but at least I can breathe a small sigh of relief.

Today was our follow up EEG (which turned out to be far less active than the last… due, apparently to the fact that we are 2.5 weeks out from her seizures and we are 2 weeks out on Keppra.  Still there, but less in your face.

We also chatted about the memory issues, the pukies that she has every morning and the dizzy way she feels a lot.  Food will help.  Keppra ER will also be, hopefully, helping as well because she will be taking the one pill a day at night and it won’t hit her system all at once.  Talking, I think, helped her as much as the test results.  We will know, soon, what the blood tests do.

Now, here I sit following up with the doctor’s office, sending them email inviting them to join us in our International Purple day festivities.  I actually have hope in their following up with me given the short time frame.  Dr Reardon’s office has Austin Epilepsy support information on all of their walls so I know they will actually consider joining us.  They also have contact information on the local chapter representative, so I think I will follow up with her, as well.  Maybe I can get them to join in too.

wish me luck.