My Daughter, A Student

That's right, little Miss Rayleigh Bug is officially a student!!


She is part of the 3 year old program, Head Start and goes to an elementary school in the special needs 3 year old class.

We were fortunate enough to tour the school and meet her teacher before we started the enrollment process and I must say, everything just felt right. You know, that mommy feeling that just gives you peace that this will be a good thing! A week before her first day of school we got to meet with the teacher, teacher's aid, physical therapist, occupational therapist, speech therapist, and vision specialist for a sit-down evaluation. Bug's OT from SoonerStart also attended this meeting to help give the team an outside perspective of what it is like working with Bug.

Buggie has now been in school for a full month and she is doing FANTASTIC at school!!

Bug with her first school project! She did hand-over-hand to decorate her Easter basket!

Her Easter basket came home with eggs filled with marshmallow candies that she loved!

I must admit, I was a little nervous at first. More excited for Bug, but still nervous at the same time. All moms, probably all parents in general, have that initial pang of nerves when it comes to putting your child in someone else's care but I think there's a whole new level to that when your child requires special care. Especially when they need as much care as Rayleigh. She is the only student in her afternoon class that needs her wheelchair. She is the only one that cannot sit, stand or walk independently but she is not the first student that the teacher and team have had in her situation. I feel confident that Rayleigh is in more than qualified, able hands when I drop her off at school. They have really come to know Rayleigh Bug and I think she's really meshing well there!

My most favorite part is dropping her off and picking her up - she has other kids around her almost every time excited to see her and to help push her chair in or out of the school doors (along with a member of her school team of course!).

Oh, my other most favorite part (hehe!) is hearing her daily report at the end of her day when I pick her up. Her teacher even shows pictures of Bug and what she did that day occasionally. These few minutes at the end of each day are so important to me because I don't get that moment that other parents get, that moment where you ask your child "How was school today?" or "Did you do anything fun at school?" or anything like that. It warms my heart that her teacher or any member of the team that brings her out takes that time to tell me how Rayleigh did!

Bug on her first day of school!

She is thriving and I couldn't be more proud of my little Bug!!

Rayleigh is 3!

This post is really more of a photo blog but I wanted to share a little bit of Rayleigh's birthday with everyone! We decided to take Rayleigh Bug to the aquarium for her birthday instead of a party this year. She hadn't been there before. We knew that this would be great sensory for her along with a lot of fun for her and everyone! We were fortunate enough to have some family and friends make the drive to join us in celebration!

 

As you will notice in the pictures, we were sporting our purple! Buggie's birthday is March 26th. Her birthday falls on Purple Day, worldwide Epilepsy Awareness Day! People across the globe wear purple on March 26th each year in honor of those with epilepsy!

 

Enjoy the pictures! We enjoyed the day!

 

 Cake toppers and gift bags created by me :) CutieBug 

 

 

 

 

 

 

 

 

 

When we got home Bug opened presents from her Florida family and this card was included! We did hand over hand to add the stickers just the way she wanted to :)

 

Goodnight from Buggie in her souvineer shirt!

Uncertain Why

Michael and I are at a loss. Over the last few weeks we have noticed Bug's seizure activity changing. At first it was just like her partial onset seizures at night were going away and were being replaced with 1-3 atonic head drop seizures. Her upper body would just kind of collapse for a split second and then she would pop right back up. This is different from the myclonic spasms she was having a year ago where her arms would spread out wide and she would quickly bend down so we (her neuro, Michael and I) do not think it is epileptic spasms again which is good because those are so difficult to control.

When the atonic head drops started we weren't too super concerned because were confidant that raising the strength of her VNS pulses and changing the duty cycle, discussed in the previous post, would zap away those last few drop seizures. Well, changing the cycle has seemed to completely control the partial onset seizures (fingers crossed!) but now the atonic head drops are increasing and coming in clusters.

I've been keeping all of the notes in Bug's seizure journal as usual and I just don't know what to make of it. We started a medicine a few weeks ago to control excessive drool but the neuro doesn't think that would attribute to the increase of drops.

I had a sickening feeling that he is going to want an EEG soon and Rayleigh just does NOT do well with the sleep deprivation involved with an EEG and doesn't always nap once we get there for the appointment. But if it is necessary then we will do it!

We see the neuro this week and I am really hoping that he believes we can tweak the settings on the VNS and get these drops under better control. After a cluster of 3-5 drops within a 3 minute period Bug gets fussy. She sounds uncomfortable, not scared or hurt, but as a mom you still want to "fix" whatever is ailing your child.

I really hope we can fix this issue before it gets any worse. She is my angel, my world.

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Current meds:
Onfi 10mg, 1 pill, 3 times a day
Vimpat 50mg, 1/2 pill morning, 1 pill night
Banzel, 2ml twice a day
Kuspova (drool med), 2.5ml twice a day

VNS set at 1.25 out of 2 strength, on for 30 seconds every 3 minutes

1 Month & 10 Days

That's how long it has been since my last post. It totally feels like it has been much longer. I suppose that could tell you a little bit of how it has been this last month or so.

Rayleigh has been tolerating her VNS very well! Every 2 weeks we are seeing her neurologist to adjust the strength of her VNS. When I say strength, I am referring to how strong the pulses are. We are also to the point in the journey where you can start adjusting the duty cycle. The duty cycle is how long the VNS pulses and how long between the pulses. The starter point is: pulsing for 30 seconds then off for 5 minutes or more commonly spoken as 30 seconds of pulsing every 5 minutes. This is automatic and goes on and off by itself all the time.

Buggie is currently at a setting of 1.25 strength (out of 2.0) and her VNS is pulsing for 30 seconds every 3 minutes.

We decreased her off time to try and zap a few lingering myoclonic and tiny partial seizures that continue to happen during the day. Next week we will go up to 1.5 strength with the same timing. We will probably stay at the 1.5 setting for a little while because Bug has had such an improvement already and while we are at the 1.5 we can adjust the duty cycle. If seizure control is still not gained to a desired level (0-2 tiny seizures a week) then we can increase the strength.

So other than being a tad overwhelmed between the life of a special needs mom (meaning medicine, all night parties, pain management, doctor appointments and multiple therapies a week), and taking care of the husband and house and working my booty off on CutieBug party decorations everything is normal for us. I will be taking on more orders than usual with my Etsy business for a little while because we are trying to save up for a minivan with wheelchair ramp so if I am MIA from this blog you can find me on Facebook or text me if you know me personally and want Buggie updates :)

When I get past the crazy at-home work schedule I plan to do a few posts about the various special needs equipment we've tried/used/ordered.

Our Experience with Banzel

Maybe you're thinking that the title of this should be "Bug's Experience..." but let me tell you, any time we make a change for Bug, we all go through it! You'll see what I mean in this little story.

Banzel is a medication designed to control seizures in combination with other medicines. Rayleigh Bug started taking Banzel on November 13th. We began with 1ml twice a day for one week, then 2ml twice a day for one week and then reached her goal dose of 3ml twice a day. She is also taking Clobozam/Onfi and Vimpat for seizure control.

Not long after she had been on the full dose did we start noticing mood changes. I mean, she hadn't been her happy, bubbly self since Lamictal months ago, which she stopped taking at the beginning of November - but this change was awful. I don't mean to be the gray rain cloud over all this but it was bad! She literally woke up cranky making whiny noises, irritable, kicking, uncomfortable, flailing, and such.

So we figured, "Ok, this is probably just her system adjusting to the new dose of Banzel. It will wear off as her body gets used to it. I hope."

2 weeks passed and we couldn't stand it any longer. Our little girl was not happy. BUT she had the best seizure control she had obtained in months! Before Banzel she was having 2-4 tonic seizures a day. A tonic seizure being where she would tense and curl her limbs in with good breathing or sometimes labored breathing and her eyes would look off, no shaking or jerks. Each tonic seizure lasted about 60-70 seconds.

With the full dose of Banzel in her system, Bug was only having a few tonic seizures a week and had started having absent seizures. An absent seizure for Rayleigh involves her looking off, usually to her left, for 1-2 seconds and then coming right back to. She was having about 2-3 of these new seizures a day after Banzel.

I contacted Bug's neuro and gave him our list of pros and cons and he explained that everything I was describing were side effects of Banzel. He prescribed us to lower the dose of Banzel from 3ml to 2ml twice a day and wait a few weeks for changes to be seen.

So we waited.

And we waited.

And we kept waiting.

I am very very very happy to report that her mood has MUCH IMPROVED these last couple of weeks! She's laughing, giggling, making eye contact, waking up and snuggling instead of kicking and she is just happy!

We're still not sure if it was the Banzel finally adjusting in her system with the smaller dose or if the VNS being activated had something to do with it but we are so grateful that she is feeling better!

So anyway, my advice to parents considering Banzel: The first few months are tough so make a glass of wine and let it pass and do whatever makes them happy (for Rayleigh during those first months we would drive around, the motion would momentarily calm her) and if you see seizure control then try and stick with Banzel and the irritability should wear off, eventually ;)

Rayleigh's Year in Numbers

I thought it might be a neat idea to gather some numbers from Bug's year to wrap up 2012. I keep everything down in my calendar and keep a seizure journal that includes every seizure, bad day, sick day, medicine change, etc. So as I'm going back through these books there are some sad moments. I'm realizing that while most moms are driving their children to a park, I am driving Rayleigh to physical therapy. Or while other moms drive their kids to a playdate, I am driving Rayleigh to a doctor appointment. But I will keep on keeping on because all of those things are to help my sweet Bug! And that is exactly what we'll spend 2013 doing, and every year after this!

So, here are some figures from 2012.

• 8 Neurologist visits
• 2 Epileptologist visits
• 7 Pedatrician visits
• 2 Neuro-opthomologist visits (eye surgeon/doctor that also specializes in the brain)
• 2 Hearing tests - passed both!
• 4 Trips to the ER :(
• 2 EEGs
• 1 ERG (eye test done with probs on eyeballs while sedated)
• 44 Physical Therapies at Jim Thorpe
• 35 Occupational Therapies at Jim Thorpe
• 42 In-Home Occupational Therapies with SoonerStart
• 9 In-Home Vision Therapies with SoonerStart
• 7 In-Home Visits from OPAT
• 9 Months on the Ketogenic Diet (plus several months in 2011)
• 365 Doses of Melatonin
• 31 Medicine and/or Dose Changes
• 1 Surgery - to put in the Vagus Nerve Stimulator
• 812 Seizures - approximately - including Tonic, Partial Onset and Absent
• 1 DIAGNOSIS OF CDKL5
• 43 Sunday Suppers with the grandparents!
• 8 Trips to the Zoo
• 3 Family Photo Sessions
• 6 Seizure Free Days
• 1billion hugs and kisses :)

So there you have it, our year in a nutshell. Looks crazy all down in numbers and puts it all in perspective to me - gosh, it was an exhausting but fun year and there's another one ahead of us now!

HAPPY NEW YEAR!!!

 

 

Surgery & Healing

Rayleigh Bug's surgery to get the Vagus Nerve Stimulator (VNS) put in was on Thursday. We were to check in at 5:30a and the surgery would start at 7:15a. Of course, Miss Bug thought it would be a great idea to start the day at 2:30a! So, needless to say, we were dragging our feet to the hospital at 5:30!

We arrive and check in and shortly after that they take us back to the "holding room" where they explain how the day will go and we get Bug's gown on her. Dr. Yaun, the neurosurgeon, came back to let us know what to expect and answer any last minute questions and then the anesthesiologist came in to do the same.

After an hour in that room it's time to take her back and start anesthesia. She had fallen asleep in the holding room so they expected no issues at all getting anesthesia to her. They would do it through a breathing mask which she tolerated very well the last couple of times she went under anesthesia. Michael and Lovie went straight to the waiting room but I got to walk with Bug until they took her to the next room to prepare for anesthesia.

 

It's a wierd feeling in that room. You've mentally prepared yourself, you are confident in the surgeon, but you find yourself with this small nervous feeling or something. I started tearing up and telling Bug how strong she is and explaining what will happen and how she'll feel when she wakes up but that I will be right there when she does and that Dr. Yaun and the nurses will take extra good care of her and I give her lots of kisses. Then I compose myself and head to the waiting room.

Once I'm back in the waiting room I'm feeling pretty good again. I know she's in good hands and that the surgeon has done this surgery without complications every time!

About 40 minutes into the waiting I receive a phone call from the nurse letting me know that anesthesia went perfect and Dr. Yaun started 20 minutes and it was going very well and that Dr. Yaun will be in once she's finished to let us know how it goes.

So we wait, and wait, and wait. We see families come in and wait, crying or showing no emotion. We see doctors come in one after another to let families know how their child's surgery went and then the flood of relief on that families face.

Then after 2 hours in the waiting room we see Dr. Yaun coming past the glass wall and as soon as she turns the corner and finds us she starts beaming and our flood of relief begins before she even speaks! And she says that it went perfectly and Rayleigh had the perfect skin and muscles for VNS placement and the leads attached right onto the vagus nerve like they should! She said that they turned the VNS on to do a couple test pulses and it did exactly what it should!

A little bit later a nurse comes and gets me to see her in Recovery. She is still in and out of sleep and very groggy but she's there, my strong baby girl! Only one at a time is allowed in Recovery so I take my time with my Bug then trade spots with Michael so he can see his baby goo, too!

Then they take us to a Step Down area which is just little rooms with curtain doors to stay until they discharge you. We are all allowed in the Step Down room so now Lovie gets to see her, too! We're calling and updating family members and making sure Bug tolerates juice and then they release us around noon.

She did very well the rest of the day at home, still a little groggy but not really sleeping anymore. Then Friday we continued doing Tylenol/Ibuprofen every 3 hours to manage pain but she was doing great! She was moving around and laying on her side and not too fussy. She is so strong.

Dr. Yaun told us we could take the bandages off on Saturday so we did that yesterday afternoon and I was like "Whoa, they cut my kid open!" haha

She should be feeling great for Christmas and then the next week we will see her neuro to activate the VNS and start the pulses very slowly.

Thank you to everyone who thought about, prayed for, and sent well wishes for a successful surgery and quick recovery! We love you all - Bug is blessed to have all of your support :)