sleep deprived

***

Monday night .. 
To: Team Brooke
From: Jess
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All,
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Luau and I have been noticing over the past few days that Brooke has been looking up (not moving her head, but rolling her eyes toward the ceiling) quite a bit. We’re wondering if any of you have observed the same and if so if you’ve noticed any kind of pattern around it, ie times of stress / anxiety. 
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We’re going to try to keep track of when it’s happening but so far we’re at a loss. Any thoughts / insights would be greatly appreciated. 
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Thanks!
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Tuesday afternoon:
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From: An SLP on Brooke’s team
To: Jess
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Hi Jess,
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Some thoughts regarding the eye rolling…
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Has Brooke ever been checked for seizure activity? I only ask because sometimes small eye movements can be a sign of a seizure. May be something to rule out if it continues to happen.
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As I read the e-mail, my phone begins to shake in my hand. I go numb. I blink back tears. I nearly vomit.
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Then I take a deep breath.
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Lose it later.
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Action first.
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What do I DO?
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An e-mail to the developmental pediatrician, who agrees there is cause for concern.
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A phone call to the regular pediatrician, who also agrees.
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A referral.
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A message for my dear friend, J whose daughter has autism and a rare seizure condition. “Where do we need to go for the EEG?”
I know she’ll know. I wish to God she didn’t.
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A call back from  J, “Honey, Are you OK? I couldn’t understand your message. Tell me what you need.”
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I had started to cry while leaving the voicemail. I’d held it together all day, but those words – possibility of seizure activity – they were too much. They caught in my throat, snaked around my heart and wound up stuck somewhere in the middle of a jagged breath.
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I explain what we need. She tells me where to go. We will insist on the smaller campus of the City’s renowned Children’s Hospital. “It’s quieter there,” she explains. “Calmer.” She knows just how important quieter and calmer are.
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A call to the pediatrician. “Yes, that is where we need to be. Yes, I know it’s further away. Yes, it’s where we need to be. No, I don’t want to go to the one closer to the house that has more resources at their disposal. Trust me on this one. Thank you.”
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A call back in the morning, then another. “They’ll be in touch with you soon.”
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I google the phone numbers and call them myself. Mama’s not waiting.
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The EEG will have to be sleep deprived. “Sleep deprivation stresses the brain,” explains the intake nurse. “Oh, honey,” I say, “no one needs to tell me that sleep deprivation stresses the brain. Believe me, I know.”
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A welcome laugh.
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Instructions. “Keep her up until midnight and wake her at four. No caffeine. No hair products. Conditioner is fine but must be well rinsed. Bring anything and everything from home that may be comforting. DVDs, stuffed animals, games, anything she’d like to have with her. She can wear whatever she wants.”
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I laugh. “If you tell my girl that she can wear whatever he wants, she’ll come dressed as a princess.”
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Best answer EVER …”Why not?”
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Why not indeed.
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I send up a prayer of thanks for J. God, did we call the right place.
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A text from J making sure we got in, followed by a call. “Jess, I called over there. They knew who Brooke was right away, but now they know a little more. I made sure you have D. She’s the best tech there is. We’ve never had a better experience than with her.” My heart aches. I know just how many ‘experiences’ they’ve had.
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I can’t believe that J made time for this. She will never cease to amaze me.
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An e-mail from another of my closest friends. A moment of snark that she knows I need, followed by this:
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“I have [the girls] praying before every meal. After [my big girl] finished, she opened her eyes and said, “I’m not sure what we’re praying about, but I’ll pray for Brooke every day of my life if she needs it.” And then she said, “And Mom?  She’s going to be okay.  I know it.”
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Tears.
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Good ones.
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That girl is never wrong. I’d trust her with my life.
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***
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In my heart of hearts, I truly do not think that Brooke is experiencing seizure activity. It just doesn’t add up. But it also doesn’t feel right. And I can’t deny that there is enough evidence to warrant investigation. After all, I’m the one who just yesterday said to a friend, “If it doesn’t feel right, it probably isn’t.” Head in the sand doesn’t help my girl.
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So we go. And God-willing, we will rule this particular nightmare out and move on.
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***
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It’s 5:51 am. We’ve been up for nearly two hours. Brooke is playing a game on the computer while I write – “Play with me, Sesame!” again and again and again. She holds Prairie Dawn up to the screen to see her friends. “Look, Prairie,” she says. “That’s YOU!” Together, they sing along to the Sesame Street songs. I swear I could eat her.
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Last night, she told me in no uncertain terms that she will go to the special doctor’s office in a pink princess gown. I was informed that she will be wearing princess shoes, some beaded necklaces and a bracelet, along with a pink princess ring. She will be called Princessa Brooke.
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Why not indeed.
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The checklist is complete. We’ll make sure she has everything she needs on the way out the door.
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The laptop – loaded with her favorite episodes of Elmo’s World and Dora the Explorer
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Two brand new, never-before played with fidget toys that just happened to come in the mail last night
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Prairie Dawn
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Dora
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Three favorite books
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Stickers
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Paper
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Magic markers
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Some last-minute, assorted toys
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Mama’s desperate, aching prayers – No more. Please, God. No more.
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We’re ready.
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Ed note: Sorry about all the dots and stars on the screen. The formatting was a mess and they were a quick fix. 

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54 thoughts on “sleep deprived

  1. Hope the procedure goes smoothly. You sound as prepared as can be, and faithful “J” helped pave the way :) You’re doing the right thing.

  2. I hate that this question is even on the table, but I am so grateful that J is there and was able to help smooth the way for Princess Brooke. I can just picture Brooke, I mean PRINCESS Brooke, in her gown and jewels. She will have them all her willing and loyal subjects before she is done. :-)

    Sending prayers and love and hopes that there is useful information to be had one way or another. And sleep. xo

  3. Said a prayer for you and yours this morning. We are strangers – but we share a common goal…the fight of a lifetime for our kiddos. Seems that fight is harder this week for you (we’ve had a bad one too) and I hope you can feel the support and prayers of many.

  4. Hugs, love, prayers, and (va)juju for you and Brooke.
    ~~~~~~Zzzzzzzappppp~~~~~~~~~
    Praying this is all just some sensory silliness and nothing more. Praying HARD. xoxo

  5. Princess Brooke is a trooper! And so is her Mama. I know other families who have gone through this, Jess. Scary and upsetting, yes. But you owe it to yourself and to Brooke to get as much information as you can. Please keep up posted.
    So much love!!

  6. “I can do all things through Christ who strengthens me” Phil 4:13. Praying for strength and mercy for you all, and wisdom and guidance for the medical team. One love DOAM:)

  7. Oh my! Sending positive vibes your way. Her Highness, the Princess Brooke will be fine! God has her in His hand! After all, He you her YOU for a mom.

  8. We are going for an EEG today too. Our 15 yr old started having absence seizures (the eye rolling ones) when he was 5.
    It is exhausting that he can’t catch a break, but it will be ok. The seizure med he is on now is also a mood stabilizer, so it is helpful to him on many levels.

    You are in my thoughts and prayers!

  9. Sending my prayers up for Brooke and your family. Your stronger than you know and hopefully more than you have to be. Good thoughts your way !!

  10. Love you. Thinking of you. Hoping it was all for nothing. You will make it, you are strong, you are brave. Hugs mama.

  11. Think about what Christi (comment #13) is saying, here, Jess! We took our daughter in for an EEG and MRI when she was three, and we were praying FOR seizure activity (she didn’t have any, and we were disappointed); seizures can be treated — clinically, it’s a scary DX and it’s usually a lifelong issue. But there are meds and procedures that have been clinically proven to stop seizure activity. If Brooke can be treated for seizures that cause her to lose cognition, then this could make a huge difference in Brooke’s cognitive and social development. I know it’s not exactly what you want to hear, it’s one more medical problem, and it’s scary. I’m not being glib or taking it lightly. But, Jess! This could be very good news! Best, Jenny (momofzoe.com)

  12. The satellite locations of Children’s are the best….we were just at one on Wednesday. We go to one if we need a blood draw for ANYTHING. You don’t need an appointment, you can request child life services for distraction, and no one flinches when he freaks out. They are amazing people there, and they will get to the bottom of this eye movement!

    Sending hugs and prayers!!

  13. My love and prayers and kee-mo-Ky-mo’s are flowing to Princessa Brooke and all of you today. She truly is royalty and so is her very wise mama.

  14. Sending prayers your way as we have been through this event 4 times in a variety of settings. When we got enough info and on the right meds, it sure made a huge improvement on her behavior, cognition and sleep (she has the majority of her seizures in her sleep). It is a scary DX no lie, but better to know and get treatment if warranted. I pray it is not so for Princess Brooke’s sake and yours, but I am so glad you did not put your head in the sand. Way to go Mama! Sending prayers and good thoughts your way. Hugs.

  15. We went through this with my daughter and it turned out to be just her latest sensory behavior. It went away a few months later, no doubt replaced by something equally puzzling. Sending good thoughts your way.

    • Same here, equally puzzling behavior did relpace it indeed. It turned out to be nothing , but man was I scared. Lots of prayers for you and all our family in DOAM land.

  16. Sending love and prayers for beautiful Brooke and all of you. I’m so sorry you have to go through this.

  17. I wish I had the words to describe how my heart feels reading your post. My son Ben is 4 years old, we truly believe that Ben is having absence seizures. Unfortunately we have had 2 inconclusive EEG’s. We are waiting to get back in with the Neurologist. Please know that my heart shares your pain and frustration. I will continue to pray for you and Brooke.

    With warm regards,
    Jennifer

  18. Thoughts and prayers with you and your baby. I went through this with Cymbaline when she was being diagnosed. We thought she was having them for the same reasons you describe. Turned out fine, no seizures. She’s since stopped doing it, and we *think* it was a stim. Prayers and love that it’s good news for you too!

  19. My heart goes out to you. I know how scary it is. My 3 year old is going through the same thing right now. “Increase in staring” they’re calling it… at the moment. We’re in the data taking stage right now. I’m kind of dreading taking the data to the neurologist.

    My thoughts are with you today. I hope everything goes well.

  20. My thoughts will be with Princess Brook today, and here is to hoping that this can be ruled out.

    And, last week when you needed to pull back? Dear lord, yes. Yes, you did. No matter what the outcome, I hope that you can find calm somehow.

  21. Thinking of you Luau and Princess Brooke every moment (maybe that’s not different than any other day.

    I love you,
    Mom

  22. All of you in my prayers this morning. Knowing all is well and you are held in loving support. Thanks as always for being willing to share the intimate details of your journey. Even in the midst of this, you are making a difference for us. xo

  23. Prayers and good thoughts for you all this morning. I so miss the days when my little one would prance around town in her princess dresses. Oh yea, and “WHY NOT?” is my new mantra, I love it.

  24. Okay, so now I get the pieces of info on Twitter (Luau) and FB (Diary) about sleeplessness. It’s about time you got your priorities straight and made time to explain this to us out here in Diaryland (totally kidding!!). Sending positive thoughts, prayers, and whatever else I can dig up with love.

  25. Oh, Jess, Prayers are coming your way… We went through this exact process with our now 5 year old daughter (K) last year around this time. It was definitely scary and overwhelming at the time, but you get through it. Our daughter has high functioning autism and had the eye-rolling episodes as well and was diagnosed with partial seizures and is now on a medication that not only helps with the seizures, but also is a mood stabilizer (like a previous comment). It has really helped her, and as our pediatric neurologist said “interaction and learning become less difficult when you’re not spacing out all the time”. If you want to talk to a mom that’s been through this whole process recently feel free to contact me.

  26. Where there is love, there is courage.
    Where there is courage, there is peace.
    Where there is peace, there is God.
    And when you have God, you have everything.

    You have so much love for your child that you will find the courage to carry on. All my prayers.

  27. I’m going with what your friend’s daughter said.

    She’s going to be okay.

    Strike that.

    She IS okay.

    And give her a little time…she’s going to change the world even more than she already has.

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