Wave bye-bye.

Little PP's birthday is in 11 days. She will be three years old, and MAN, has the time flown by.

The past three years have been the best I can recall! Thanks to my girl, I have had the pleasure of meeting all sorts of different folks. Teachers, social workers, doctors, therapists, other families with children who have a disability and many others, have all made a huge impact on our lives. I always knew the day to say goodbye to them was unavoidable, but I never really gave a thought to it. 

Reality set in about a week ago.  

Last Tuesday marked the first round of goodbyes. It was such a bittersweet day. I dearly love PP's therapists because they were our go-to people for anything we couldn't understand about her. They helped shed light on so many of PP's mysteries and were more than willing to help in any way they could. These ladies always went above and beyond for our family. We were incredibly fortunate to have the same teachers for the duration of these challenging times and I count on my lucky stars for that! Each of them would visit PP on a weekly, biweekly or monthly basis spanning over every school year in the last three years! That's a lot of time to spend with any person, and it gave me a lot of time to make very close and unique relationships with each of them. It's hard for me to imagine not having someone come to our house to 'play' or listen to our challenges of the week anymore. It's really quite sad to think about. 

On a brighter side, the amazing work of PP's education team is the reason my girl can walk, feed herself, wash her own hands and play with purpose. They are the reason she is SO ready to go to preschool! They have been keeping my sanity intact since PP was just a month old and are only reasons why I am OK with sending PP off to preschool. I can't thank them enough for everything they have done for our family! Also, PP and I are welcome to drop by their offices to say howdy anytime! So maybe it's not so much of a goodbye, it's more like a see-ya-later. 

This past Tuesday was the day I had to say goodbye to PP's Teacher Lezli. I took that pretty hard. I cried. She has been there for me as a mom in every way possible while teaching me how to understand and properly nurture my daughter. She really understands what it is like to be a Special Parent. I already miss her terribly. I will be sure to bring PP into her office soon and tell her all about preschool! 

Today marked our last day of ECFE class. The class is called Special Friends and the name couldn't be more perfect. By going to this class, PP was introduced to other children and a school setting at a very young age. She met a bunch of other kids who were as far from being typical as herself and I had the luxury of meeting their parents. I can't find the right word to express the emotions these kids make me feel. I've been lucky enough to have the opportunity to watch PP's awe-inspiring classmates grow up for years. They have taught me (and their own parents) things I never could have imagined! The Special Parents are some of the bravest, most supportive and genuine people I've ever met. It's very odd to think that we were all just strangers brought together for the sake of our children because I fondly think of the parents of Special Friends as a family. Finding common ground in uncommon children has saved all of us from feeling lost, hopeless and alone. Our parting words brought tears to my eyes. However, today was definitely NOT the last time I will see them! I'm just sad that PP and I won't see them every week anymore. 

I think it goes without saying that I have been feeling sad and crying a lot this week, but that's OK. If I've learned anything from school it is that tears are welcomed. I have grown so much because of everyone involved with PP, and that includes letting myself show my emotions when I feel down. 

Don't worry, I'm also happy when I'm happy! Which is my mood most of the time. 

I am especially happy today because it's HALLOWEEN! I've known that today would be the last day I would give farewell hugs and tell PP to wave bye-bye. After the hard parts were over, I whipped up a really awesome DIY no-sew hooded cape for PP's "Plague Doctor" costume, got myself excited for new beginnings and candy. 

Preschool, BRING IT ON! It starts Monday! Wish PP good luck! It's gonna be quite an experience. 

Also, please make a note that today is the 4th anniversary of my relationship with Chris. In a nutshell, we have been through a helluva lot and we still love each other. We both forgot it was our anniversary today due to the unusual pace at which we've been operating for the past two weeks, but I know we will have many more anniversaries to celebrate so it's not too much to fret about. Now we are gonna go make sweet cards for each other to apologize. Aren't we cute?!

 This was our Halloween costume this year.

He kissed a 'boy' and LIKED it!
I manned up to show everyone to VOTE NO in Minnesota. 

We hope you do, too!

Freedom to Marry isn't scary!

Spooky dreams and sweet candy

XoX

Hair from brown to gray, it only takes a day!

Moving at a constant, quick pace is hard to do for days at a time, but here I am, about to embark on day 8 of craziness. Until November 11, my pace will be this constant 'Where the blob are my coffee and keys and other shoe?!' so I'd better get used to it.

This past week PP had an appointment/therapy session every day. On Monday she had three therapy sessions! She even snuck in a couple spontaneous ER visits. What a card, that little PP. 

Aside from the normal routine, PP did her final tests for enrolling in Pre-K school on Monday. Tuesday was the BIG meeting with all of PP's teachers, which went swimmingly. It helped me become more comfortable with this tricky transition into a big school. We even moved her start date to November 5th, a shocker to me. I really don't know how it will go, and PP might hate it, but there are SO many people who are really excited to work with PP! I can't imagine she would dislike it for more than a few days. 

This experience with PP and school is most comparable to a roller coaster ride. It's been thrilling, terrifying, and most definitely the craziest fun I've ever had. 

Sometime during the morning on Wednesday PP hurt her ankle. I don't know what she did exactly, or where it's actually hurt, but PP won't put weight on it for more than a second. On Thursday I brought her into the ER and she didn't have any signs of injury: no bruising, redness, swelling or fractures, but obviously in pain. So they splinted her little leg and sent us home. Jolly good.

Early Saturday morning, at about 3AM, PP woke up crying and making weird noises. Papa Chris went in to see what was up and discovered that PP had thrown up all over the place. She was COVERED in vomit,  giving me the idea that she was vomiting in her sleep which was slightly petrifying. I was beyond thankful she didn't choke in her sleep and that she usually sleeps on her side. I only had a tweensie-little moment to be scared and then get unscared because I had a very frizzy Papa Chris throwing a hysterical, crusted-vomit covered (and vomiting) PP at me. Mind you, it is blindingly early and I only got an hour of sleep before all this crap. The only thing I could think of was to put her in the tub. As I am scraping the chunks out of screaming child's hair and nose, Papa Chris is frantically ripping her bed apart trying to assess the damage. It's really, really nasty. We threw pretty much everything away. The contents of PP's stomach prior to the explosion were a hefty amount of Count Chocula and some cheese pizza with green peppers, so if you use your imagination you can see the colors and smell the smell. ISHY POO! So much for our Friday-night-girl-pigout event. 

We got to the ER around 5am and were out by 7. The doc said it was most likely a flu virus, but they took a urine sample per request from Momma and Papa. We know our girl, and she doesn't 'just get sick', it's never the easiest explanation with PP. Ever. The quick test done in the ER came back negative for a urinary infection as well, but there would be a culture grown from the urine sample with the results coming back in a day or so. So we took the doctors word for the flu and went home to recuperate. 

ALL DAY on Saturday PP laid around and slept. She was so pitiful and adorable. It was wonderful. Papa was working, so I had most of the day to myself. When PP was awake all she wanted to do was cuddle. She still has a hurt ankle, making walking impossible, so when I set her down somewhere she stayed put! I figured that I would get the flu within a day so I did some deep cleaning in the bathroom and kitchen while PP was sleeping. I made a delicious dinner for one (with LOTS of leftovers because who wants to cook when they're sick) and watched a movie. 

Then it happened. 

Early Sunday morning, a mad dash to the bathroom revealed the next victim of the flu bug...PAPA CHRIS! Poor Papa. HE IS SO SICK. I've been taking care of him and PP is doing her best to keep his spirits up by tickling armpits and being cute. She's feeling much better today so we ran some errands and junk.

Then another thing happened. 

I just got a call from the Nurse Practitioner in the ER at Children's saying that they found a very high count of bacteria within the urine culture collected on Saturday and PP needs to start antibiotics ASAP. 

GRRRRRRRRRR! 

I finally had a really simple explanation for PP being sick. Now it's not so simple. The NP said it wasn't too much of a concern, nothing a phone call to the Urologist can't handle. Just one breakthrough infection is better than all the other ones she had before her surgery this past summer. I guess. 

Well now that I've had my 30 min of sit down time, I am off to the pharmacy! Again! 

Peace and quiet

XoX 

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