I'm still here!

This will have to be short and sweet because I am tired.

PP and Epilepsy: Still not a formal diagnosis, but "seizure form activity" was read on the EEG and now we have been working on increasing amounts of anti-seizure medication for a few weeks. She seems to be responding positively to treatment, which is encouraging! It seems to be easier for her to focus on an activity for a longer period of time and she is retaining the parts of speaking that we have been working on tirelessly for the past few months. These are huge gains and I am thrilled with the progress!

PP and school: Test after test, we have made it to the final stretch in preparation for pre-school. We only have one more test to go through, which is on Monday, then Tuesday is our BIG meeting with everyone at PP's new school. This will be the last day we see all but one of PP's current teachers, and the first day we sit down and really get to know the new teachers. Saying goodbye to her current teachers will be hardest for me, I'm sure. They have been with us since PP was a month old, each of them coming to our house once a week for months at a time! They know PP in a way that is so unique. The past three years have just flown by and it's such an odd feeling to know this chapter of PP's life is coming to an end. I'll be blubbering like a wee-baby.

It makes me sad, but I'm excited. I think PP is SO ready to go. She has a hungry mind. And she loves buses.

Everyone should know by now that PP has a very lucky birthday, 11/11, but most of you don't know that as of right now, PP's  'First Day of School' will be on November 12. Yep. A Monday. The day after her third birthday. *We are gonna party like there is school tomorrow*

Cue heart attack.

Other than that, we have been busy doing stuff around the house and taking care of business all the time, or TCOBATT. Usually chicken-with-no-head style TCOBATT, but it works nonetheless.

My weekend will be spent making sweet thank you notes for PP's sweet teachers, and probably making cookies and junk and singing badly. I'm just waiting for November 11, then 12. The latter is the first day of the rest of my life. I'm ready!

Live long and prosper
XoX

Answers

It's been quite a couple of weeks. I've been mulling over the idea of Epilepsy for a while and have come to a conclusion: It sucks. It's scary. I hate Epilepsy. However, I will not let it hold PP behind. I will do everything imaginable to keep PP ahead of Epilepsy! With that said, today we found out that PP pretty much has Epilepsy. I say pretty much because it was a rushed process, but I didn't need much convincing of what I already knew. The Neuro Doc only got 15 minutes of data, but it was enough. We will be back in a week to discuss the results in more detail. Since the day Doc McLellan put the bug in my ear I have been watching PP like a hawk. Every move that seemed out of place turned into 'AAAHH seizure!!!' which can be annoying! I wasn't able to film anything as instructed; it turns out that filming someone having a seizure when you're alone is really freaking hard and nearly impossible. I was able to see some key differences in PP's daily motions that helped me explain in detail the type of seizure PP has to the Neuro Doc. So when he listened to me explain the seizure, he knew what he already saw on the EEG results, and he instructed us to start PP on anti-seizure medication starting immediately. Pretty much Epilepsy.

Phew. What a relief! I mean, what?

The past two weeks have been oddly therapeutic. I've been stressed and cranky, but my nervous energy has forced me to clean and organize almost every inch of my house. Yay! PP and I have been so very busy, I hardly had time to worry. Double yay! I feel really proud of my family, we coped with only allowing ourselves 4 1/2 hours of sleep very well. Coffee was involved! It also feels good to finally have some answers. It feels like a weight lifted off of my chest. I feel like we finally got a solid step in the right direction. Quintuple yay!

It's not so bad. I am sitting right next to PP, and she's the same little girl I've always known. Even after being sleep deprived beyond belief, having to tolerate some very unfavorable conditions while being coaxed to sleep (FAIL) in a doctors office, then having a large Hungarian Neurologist stamp another line on her record, she just wants to sit next to me and tickle my leg with her monkey toes. I really feel like eliminating seizure activity will be a positive thing for our family. I'll only have to remember new medication information and to update PP's medical information, which is cake.

PP will be starting Pre-school in about two months. I feel much more at ease with this transition because of her new diagnosis. I won't have to worry about someone misunderstanding her 'outbursts' as tantrums, nor will I have to worry about her hurting other people during one of her seizures. Although it is an uncommon type of seizure, when you say Epilepsy to someone, they generally know what you are talking about. This is a new thing to me...Momma likey! I get tired of having to explain everything about Weaver Syndrome, sometimes I think I should make PP some business cards! Haha! Now I can just say, "Hey stranger, it's Epilepsy. Don't be a hater." and the light bulb will switch! Huzzah!

I'd have to say that this was a darn good Friday. I hope everyones day starts off good, and ends better!

Peace and love
XoX

Water Balloon

I swear if PP doesn't have Epilepsy I'm going to kick someone...then kiss them.

Ever since the Doc McLellan put the bug in my ear about Gelastic Seizures I've been an obsessive and moody Momma. Can you blame me? I have been Googling the SHIT out of Gelastic Seizures trying desperately to get a better understanding of it and all I can say is that this condition is rare and the YouTube videos make me feel...weird. Weaver Syndrome is rare enough on it's own, but chronic giggle seizures?! SERIOUSLY?!

It's hilariously infuriating.

It can become a bigger issue and is not curable or very responsive to treatment, but it explains a long list of noodle scratchers that I shrug off on a daily basis. Epilepsy initially seems like a long shot for a diagnosis, but it can cause behavior problems, memory loss, and developmental delay in all areas. PP recently took a step backwards in the area of speech development and she has angry/laughing outbursts that can come from nowhere. However, she is making her way back developmentally to where she was about a month ago and I've been trying to reduce daily stressors that can trigger a seizure. Still, I feel like a drunk with a barrel of apple juice. Pissed off and ready to throw things. Motherhood is making me crazy!

I forgot to mention in my last post that I was advised to film PP having a 'seizure' to make the diagnostic process go smoother. How nice. Neither myself nor anyone I know has heard of Gelatsic Epilepsy. Explain to me once more how I am supposed to discern a laughing seizure from just laughing at a hysterical Momma Lace? The only conclusion I can come to is to constantly film PP doing her thing. Sadly, my phone only holds about 10 minutes of video because I have massive amounts of useless crap and really cute pictures on my phone. Do I really have to re-organize my phone and, consequently, my entire life? Hmm. Hello anxiety, be nice to me. I'm getting old.

There are moments in the day when I feel like I'm caught in a water balloon fight. Most of the time I'm nice and dry, keeping the brave face on that everyone likes to look at. I do like brave face the best. Then PP's beautiful hazel eyes will look at me and literally knock the wind out of me. It's not fair to be so easily caught off guard. She is such an amazing girl and it just tears me up that I can't take away her owies. Did you ever throw water balloons at passing cars when you were a kid? I did. That biz was fun. These days, instead of laughing and chucking balloons without consequence, I'm bombarded by waves of rainbow balloons filled with PP beauty and awesomeness, soaked with a million thoughts leaving me insta-pissed. PP is none the wiser. She only sees lovey goofy Momma face.

The appointment for Neurology is tentatively scheduled in December.

XoX

What's next?!

Today marked the true end of Summer for PP. The weather is sweater-worthy and we began our busy weekly schedule. I've been yawning a lot today.

Oh, it's also Friday? Thank goodness.

Friday means we had a very important appointment today. Friday means that there are only two days until Monday. Friday means 4-5 days left until we get PP's glasses back. The most exciting thing while thinking about Friday is Saturday, because PP and I will go to a Fall Festival in the community! There will be a petting zoo and live music, among other things. It's just a hop skip away from our house so there's no pressure for time, food or supplies!

PP's famous pink glasses went out of commission on Wednesday this past week. I couldn't stand the gouges and scratches that always end up in the very center of her lenses! Sadly the optical store was not able to do a quicker turn around time than 4-5 business days, considering the extra special-ness of the glasses, so PP will just have to make due with horribly blurred vision for the time being. The absence of glasses is a welcome change to PP because I no longer can scold her for taking off her glasses to put on various other types of glasses; she just wears a million pairs in a day now! I felt like it was a good time to get those goggles fixed up anyways. PP saw the eye doctor last week and he discontinued the daily eye patching regimen! I was very happy to hear this because not only am I able to throw away the stupid eye patches, but the glasses alone are making a positive change in PP's vision. She never, ever let me put the patch on her eye without a fight anyways!

On Monday PP has an appointment to see her orthotist. She will most likely get new braces for her feet. She might be ready for a simple sole insert! The orthotic braces have made a huge, positive impact on PP's ability to walk and I love them especially because they have a dinosaur pattern! This appointment is wedged in between two therapy appointments at Children's Hospital, thus marking the start of tri-appointment days! We will run into a FULL day of appointments about once a week from here on out.

Cue insanity, wish for a bottomless cup of black coffee and a cigarette.

Today was a big day. PP had her first follow up with Developmental Pediatrics. After her first appointment with Dr. McLellan, we started the cocktail of therapies through Children's Hospital. I was anxious to see what the Doc would say now, but I didn't think it would be more than just a pat on the back and an order to carry on. As it turns out, the Speech Therapist at Children's works alongside Dr. Mclellan on a weekly basis and PP is often the topic of conversation. PP has both the ST and Doc stumped in terms of how to deal with some of PP's issues. The ST told Doc about a weird characteristic of PP: it's hard to tell if PP is crying or laughing sometimes during the day. If she experiences a strong emotion she doesn't seem to know how to express it so she laughs and cries at the same time. This characteristic put up a flag for the ST because she had never seen a child behave like that before. Speech is the hardest thing for PP to practice, so the ST sees a lot of this weird behavior and how confusing it can be from an adult point of view. Personally, I would call it a "tick" for lack of a better explanation, but Doc had a different idea. Doc referred us to the head neurologist at Children's Hospital in St. Paul because he wants Neuro Doc to rule out the possibility of Gelastic Seizure in PP. I was a bit skeptical of this possibility for PP, but as I searched YouTube for videos of gelastic seizures I feel certain that PP has this type of Epilepsy. I felt like I was watching a video of PP when I came across this video in particular. The possibility of Epilepsy strikes a few raw emotions in me, but I am trying to stay positive.

With that said, I need a drink (of wine). I have a bonfire waiting outside and it's a beautiful evening.

Good vibes and long drives
XoX

Motherhood is making me crazy.

Motherhood is making me crazy.

I think orange. 

Happy Labor Day!

XoX

I'm right, you're wrong.

It was Monday. I was on my "A Game" and had been exclaiming my self admiration to PP all morning. There was a lot of dancing.

Well get this: The Speech Therapist had pink eye. It surely wasn't "day old pink eye." I could tell it was still fresh. Real fresh, as in just passed the non-contagious mark a few hours ago SUPER-FRESH. Her eyes were watering and very red, nose trickling, and she was sneezing up a storm. I wasn't very happy. 

PP thought it was funny. Every time the therapist sneezed PP would just start laughing hysterically. It's the cutest laugh. I couldn't help laughing along with her! On a more serious note, I would have to say the amount of frustration I felt upon seeing a sick employee coming in to work with my daughter was staggering. I didn't want to yell at her, so I laughed instead. A lot. 

Days went by with no pink eye. Friday rolls around and I am feeling more confident that we escaped the clutches of neon eye boogers and open mouth breathing. Time to get our play on! We planned to visit Great Grandma D's house and give a hug to our visiting Auntie K. During the visit, PP ended up getting into a city lake and was splashed in the face a few times, which really isn't the end of the world for how gross it is. We cleaned her up and she seemed just fine until Saturday morning. Her left eye was red and a bit puffy. She rubbed it a tad more than usual. It didn't take me long to come to a diagnosis, but I wanted to be sure. During the rush to get out of the house PP went head on with the corner of the orange curb chair, sending her into a frenzy of blood, boogers, red eyes and a very swollen nose. I felt so bad for PP! Not only did she have a giant owie on her nose, but I was sure that strangers would think she got in a bar fight! 

What a day.

I got on the phone with the voicemail for triage nursing. In a nutshell, I asked whether to bring PP into the ER or the clinic. I knew she had to go in and see a doctor regardless of what was wrong with her eye. That thing was nasty looking! I thought it would also be a good idea to get some advice on what to do about poor PP's nose. When the triage nurse called me back she just asked me a bunch of questions and then told me to wait three hours until I made a decision about bringing PP into a doctor. 

SAY WHA?!

The nurse told me to treat PP at home with hot and cold packs on her eyes because she suspected it was a cold. If (more like when) the symptoms got worse, we would go to the hospital. She reminded me of a 3 hour time limit. I was a bit annoyed. Not only did she circle around answering my original question, but she told me to wait until my daughter got worse. 

No, nurse, you're wrong. It seems as though you have absolutely no idea what your talking about. Maybe my question should have sounded more like "Pink eye. ER or clinic?" but who knows. I went ahead and drove PP to the ER at Children's Hospital. The doctor took one look at her and called it pink eye, remarking that this was the 6th case of it she has treated in the past few days. I was also told to wait until the swelling on her little nose goes down until I have a doctor do something about it, which makes perfect sense to me so I'll listen to that counsel. We got the eye drops and went home to recuperate. 

Thankfully, PP is on the upswing. I think that because of the results of her recent surgery, PP has a lower tolerance for infection. She was on a daily antibiotic for the past two years and just came off of it a couple months ago! She's got some sicknesses to catch up on. Yay. School should make things very entertaining around this household! 

Clean hands and tidy faces

XoX

I can finally wear a sweater!

It's been 43 days since my last blog post! Time just flies by when you're having fun...or really busy while having fun.

Rocking chair enthusiast in full swing

We have been thoroughly enjoying the summer weather and events. Going to the beach a couple times in a week and visiting different parks every day, just PP and I, fit into the routine so nicely. Frequenting the local Farmers Market, antique shops and garage sales were quite an experience.

Mornings in the park, ahh summertime. 

We went to therapy twice a week, every week, and have been going to various doctors appointments about twice a month. Having a few play-dates and adventures took up the remainder of our time. Here are some highlights of the shenanigans taking place around our house:

• The first event that pops into my head is a very gross one, so be warned. PP ate her own poop. Yep. Dug in her diaper and ate her own poop. Chris and I were standing with her in the kitchen, but were apparently not paying close enough attention to her. It was hilarious and disgusting to the tenth degree. I cried from laughing, I'm sure PP was beyond confused in more ways than one and Chris couldn't eat any more of his cranberry chocolate chip oatmeal cookie. 
• We spent lots of time with family, which created good vibes for re-entering school. Family time is always a good time!

Nelly and her cousin Kenny

• During one of those sweltering hot dog days of summer, PP and I ventured out towards Lake Harriet. Usually, there is a crowd of people trying to fish off a dock on our walking route, but today there was nobody there. Heck ya! I let PP out of the stroller and she bolted out onto the dock. I saw little sunfish swimming just under the surface of the water. I showed PP that when you spit into the water the fish think it's food, so they all come to try and get a bite! PP thought it was hilarious so we spent about 20 minutes spitting into the lake, giggling when the fishes came to see us. 
• PP discovered goggles and bike helmets. These are two of her many new obsessions. 
• Someone got a hair cut! You can pat Momma Lace on the back next time you see her.  

Aww! 

• A special plot of dirt in the yard is dedicated to the sensory awareness of PP, called the garden. PP loves the garden. She can rub the dirt in her hair, bury her feet, and practice scooping/pouring. PP also helped Momma plant some Rosemary and Sweet Basil plants for our indoor herb garden. 

"Maybe if I'm nonchalant, Momma won't be suspicious of me eating some..."

• Taking trips up to the Northern suburbs kept us busy. 

"We love riding in our Bluebean" 

• This girl is getting so big, I decided it might be better for her to not use a high chair anymore. She can sit in a regular dining room chair and eat off of the table, and she does well with it if she likes her food. Otherwise, she's running all over the house with it. Take today for instance, pizza was for lunch. PP loves pizza, but when she got a bit full she decided to run all over the house with it. The age of dirty walls, cupboards, curtains, bedspreads, shower curtains, et. al., is upon this household. Scared and happy face. I'm so excited my girl can walk and that she is progressing with gross motor skills, but I've become a tiny Neaty-Nancy and feel like I'm living in a frat house !
• PP was taught how to drive by her Grand-Babcock's. PP got so brave while driving the Power Wheel Jeep, she drove it up a tree! This was not the only time she took a real big tumble outside. She also fell off the slide at the park. PP fell only a couple feet, but I was close enough to break her fall. I think it scared her enough so now she hasn't been screwing around while on the slide! She also fell off the swing. Despite the mishaps she tends to be more of a daredevil. She loves the tire swing and scooting up to the edge of a flight of stairs. I wouldn't say that she is able to run, but she is close. PP has a tendency to get overly excited and trip over her own feet, and does not always catch herself when she falls. For now, we are focusing our PT work on going up/down stairs and running. The work in OT through Children's is focused on swinging, bouncing and self-cares. Going to the park is a very important task because we can knock off a bunch of daily therapy exercises in a short amount of time! 

"Mom, just give me the keys. I got this."

Sharing memories of this wonderful summer has got me thinking about all of the wonderful things that will happen this fall! Starting in one week we will have therapy every day, sometimes twice a day, with monthly doctors appointments! Bye bye, free time! Hello, friends and big changes! The biggest change is the deletion of PCA services and the introduction of services via a Consumer Support Grant. This program puts Momma Lace in complete control of the funds and services for PP that are not covered by her health insurance. It makes me feel like SUCH a grown up. Just call me Bossy Pants! It's nice to have resources like this available to use for PP. Having a disabled child has it's benefits, as does having a typical child. This method of service was not our personal Plan A, it was our Plan C, but it's always good to have a real backup-backup plan. Other events in the little clans personal biz didn't work out like we had hoped, but we found a different way to make something different work. I'm excited because my family dynamic is changing in ways that are out of our comfort zones. We are growing together! It's a good thing.


Now it's time for brownies.

Pretty flowers and summer showers
XoX