I know that the majority of people relish in the coming of March. It brings light and warmth back into their corners of the world. The cold darkness they've been living in becomes a little less cold, and a little less dark. There is finally light on the horizon; they will make it through. This year, I am not comforted by the arrival of March.
March marks getting back to the grind of appointments and testing. We've been on a bit of a hiatus and it has been glorious. While I won't go so far as to say life has been normal, I will say that it has been closer to normal than it has been in many months. February has been good for us. We've had the opportunity to live life, to make plans, to have fun together. We've been able to sit at home and do next to nothing. There have been stressful times, of course, but the pace has been slower. It has been refreshing.
Next week, we are finally going in for a new EEG. The pediatrician said it is possible that she had a seizure during the last episode, so it is time to get the new EEG. I know this has been coming for a while, I've talked about it several times, but now that it is actually a sure thing I feel a little anxious about it. Our options are either to be admitted next Monday and stay in the hospital until she has one (most likely next Monday or Tuesday based on the pattern) or to head to the hospital once one begins and go in through the ER and try to catch one. At first thought, we were sure we would go with option 2. Who wants to be in the hospital any longer than necessary, right? But now that it is a sure thing, I have second thoughts. KayTar is in such pain during these episodes, she hates movement and light and she vomits frequently. The hospital is thirty minutes away. We would have to get ready on the fly, pack her up, and drive to the hospital while she screamed in pain and vomited in the car. There is no way to keep the light out of the car or to protect her from the motion. Then we might have to wait in the ER for a while in the bright lights and noise while she writhes in pain. If it happens at night, we are out of luck. They cannot do the EEG at night. I have a hard time knowingly putting her through that. On the other hand, I don't want her to be cooped up in the hospital for days waiting for this to happen. I'm going to talk to the pediatrician more about it before deciding once and for all, but I think we might be in better shape with a hospitalization. At least she will already have a room and be comfortable when it does finally happen.
On the 16th, she has her follow up MRI as well as a spectroscopy. It is at 6:15 in the morning, so we will have to leave our house by 5am. I am so not a morning person. Neither is KayTar. With appointments like these, I just take what I'm offered because I don't want to wait longer to get it done. Its going to be a 3 cup day at least.
On the 28th, she has her sedated ABR. Her speech is coming along some, but we still have to rule out hearing impairment.
We are also adding an additional therapy to the schedule, feeding therapy. She had her evaluation yesterday and we return in two weeks. We have homework, including cheek stretches, trying (once again) to introduce a sippy cup, and trying to get KayTar to stick out her tongue.
Can't it stay winter just a bit longer? I'd like to stay here in the cold where frightening things like bears, EEGs, and MRIs hibernate, and the world is covered in a quiet, beautiful blanket of snow. Tomorrow the world begins to defrost and the sleeping beasts begin to wake from their quiet dreaming and spring to action, and we have no choice but to meet them head on.
The Promise of Spring
Spring brings not only warmth and light, but also the possibilty for answers. With the coming of spring, we will step back out onto the path of testing, but with those tests we have the hope of finding answers that couldn't be seen previously.
Next week we are getting a new EEG. I've mentioned this many times before, but it is definite this time around. We are still unsure how it will play out. I think that the most likely scenario involves the neurologist pulling strings to make an outpatient appointment once we call and let him know an episode has begun. I think this will make it possible for skip the ER portion (in which KayTar screams and vomits while breathing in the germs from all the sick people in the ER). I'm still not 100% about how it will be handled, but either way we will be having an EEG next week. I am hoping that somehow we can work it so they can catch one of these while it is happening. The last one left us a bit shaken, and we would love to have something solid to tell us what is truly happening in her brain while these events progress. We want answers and maybe a dash of reassurance.
On the 16th, she has her follow up MRI as well as a spectroscopy. It is at 6:15 in the morning, so we will have to leave our house by 5am. I am so not a morning person. Neither is KayTar. With appointments like these, I just take what I'm offered because I don't want to wait longer to get it done. Its going to be a 3 cup day at least. Once this MRI is done, we will have a much better picture of what the lesions are and how they came to be. The theory is that she had an infection in utero which caused these damaged spots, if we see that the lesions have gotten smaller or disappeared, this theory will be comfirmed. If they stay the same, an infection is still the most likely cause. If we see growth, then it is time to start digging again. The way I see it, we have the odds in our favor of this MRI bringing comforting answers. If there is no growth, chances are they will cause no further problems for KayTar.
On the 28th, she has her sedated ABR. Her speech is improving, but we still need to rule out hearing loss once and for all. Either way, this test will bring comforting answers. If she does have hearing loss, we will be able to step in and give her the extra help she needs. If she doesn't, it will be one less question to worry over.
We are also adding an additional therapy to the schedule, feeding therapy. She had her evaluation yesterday and we return in two weeks. We have homework, including cheek stretches, trying (once again) to introduce a sippy cup, and trying to get KayTar to stick out her tongue. While this additional therapy adds one more thing to the list of appointments, the benefits will greatly outweigh the time it might take from our schedule. This could not only help KayTar to overcome her texture issues, but we might be able to get her to a point where she is HUNGRY and wants to eat. We might at some point in the future, get to retire from the PediaSure club for good!
While spring will be full of tests and appointments for KayTar, it will also be full of hope. As tempting as it is to try and linger in the quiet, peaceful darkness a bit longer, we know it is not possible. Spring is here! We might have answers! We might be able to tuck away some worries once and for all. Spring is finally here, and with it comes the promise of answers. It has been a long dark winter of waiting and the answers might finally be ready to shed some light in all of this darkness.
I've done lots of tweaking with these two posts! At first it was only the first portion, but it came out a bit too melancholic for me, so I created the second post separately, but I didn't care for that either. Then I thought about scrapping them both, but instead I've combined them and I think I have a happy medium. Maybe. :)
Oh, Kyla. What a melancholy post. I'm so sorry that this is what spring holds for you. My mom hates March because it marks the month where they very nearly lost my brother (the first time).
I hope that things go well and you can look forward to spring in the future.
You are so strong. You CAN fight this. Get your armor on and your swords ready! These tests might be the ones that provide the answers for KayTar.
I love your honesty. Keep us updated. We're praying for you in a place where the daytime temperature today was 74 degrees and we haven't seen snow in 5 years.
This seemed not like a sad post to me, but kind of like you are a bear in hibernation not wanting to come out of the coziness to get more food, because you don't have enough, and its still winter.
I hope the tests go smoothly without too much trauma on kaytar's part. Tests are NOT fun for anyone (we've got a battery of tests coming up for G, through the education dept. which I am not looking forward too).
I hate Novemeber.
But I don't blame you for dreading March. I hope that all of this passes quickly and well and that you can enjoy the rest of your springtime.
Can they do an ambulatory EEG? This is where they place the leads and send you home to somewhat normalcy. They put the unit in a backpack or fanny pack and tape her head really well. This way you aren't stuck in a hospital setting and it's not quite as disruptive to your routine. If and when she has an event, you push a button and it places a 'marker' on that segment of recording. Even if she doesn't have an event, the entire recordng is analyzed bya computer for abnormal patterns.
Just a thought. Good luck!
I'm sorry that March's arrival is not comforting for you this year. I can only hope that the tests go well and you get some of the answers you and KayTar need. Because that would make you look back at March more positively.
My thoughts are with you...
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