Hand in hand, down the rabbit hole.

Epilepsy is still on the table as a diagnosis for PP's unusual behavior, but until recently I had no idea how we would move forward in the diagnostic process. No doctor will do a sedated EEG on a child who is taking anti-seizure medication because they wouldn't be able to get any brain wave readings strong enough to make a diagnosis or plan of care. Medication and sedation impede the important brain waves needed to draw conclusions about the child. We will not stop the anti-seizure medication because it is helping a little, and doing an EEG while the child is awake is about as effective as doing it while they are sedated. The magic spot is sleeping naturally; the brain is incredibly active when we sleep so the misfiring between neurons would be very vibrant and more acute to draw a diagnosis from.

PP has an appointment with her Neurologist (the one I am not quite fond of) next week. I have not been looking forward to this appointment because I've not been happy, or felt like questions have been answered, after any appointments with this doctor. Seeing this doctor makes me uncomfortable and I really want to cancel the appointment, but I won't do so because I think it's worth it to get every opinion I can gather. I've never had this problem with any doctor before so I was unsure of how to handle it. I have tried to get PP scheduled with different Neurologists, but I always get some half-assed excuse to why I can't see them. I asked a couple non-neurology doctors and therapists to help me out, and what I got was the number to a place called Minnesota Epilepsy Group.  I waited a while to call them. I am not sure why. I have such a weird feeling about the whole thing. Finally, after tossing out my apprehension, I called these people expecting to just get an appointment with a doctor to see what our next step was. Instead, I ended up scheduling PP's first inpatient EEG for the third week in December.

I think one reason I was so hesitant to call this clinic is for the fact that I don't enjoy the feeling that I get from telling someone all about PP when they have never met her before. In the medical world, things are not sugar coated. So when the question, "Tell me about Penelope." comes up I really just want to hang up. I can't tell them "Penelope is so sweet, she likes to read, she's good with a magna-doodle and she really likes cars." because that is just fluff. They need to know the ins and outs, what her other doctors say about her, and what I see her doing on a daily basis, using medical jargon. I think what really gets me is the question, "Developmentally, where is Penelope on the charts?" Ugh. The numbers. They make me shake. Reading doctors notes can be one of the hardest things a Special Needs Parent has to do. It makes you feel like no matter how many times your child can do a recently learned skill, they are still behind their peers and there's nothing more you can do about it other than what you're already doing, which is EVERYTHING. I was proud of myself though, because without stuttering too much I was able to tell the nurse, "Well, gross motor development is at 18-20 months old, language is between 6-7 months, fine motor adaptive is at 15 months old, and personal-social development is between 12-14 months old." and her physical measurements, which are equivalent to a 4 year old. I just celebrated my daughters third birthday so now it seems like scheduling a simple doctors appointment has thrown me into a tizzy. I hate the numbers. 

UGH! 

This EEG is not so simple, though. As I said before, it is done as an inpatient. We will be over at Children's Hospital in St. Paul which is a brand new experience. We have never stayed as an inpatient there before! EEEEKK! We are also not guaranteed a private room. Every room is set up to house two patients at once, with some sort of divider, and I swear to glob if we get a roommate I am going to barf. PP is going to stay in the hospital at least three days, and up to ten days, so I have to put on my Super Mama britches in order to keep myself and PP sane. Oh, I think I forgot to mention that I will be staying with PP in the hospital. I can't expect the nurses to keep the cap and electrodes on PP's head for 24 hours a day. PP will need 100% supervision. I am grateful that I won't have to be cooking or cleaning like I do at home during this stay; I can really focus on PP and try my hardest to make this experience as pleasant as it can be. I want to make a great attempt to limit the amount of negative memories from this test because I have an inkling that this will not be our last inpatient EEG! 

I don't really know what the outcome will be. I've learned to not let myself expect anything because if I do, I will never get what I expected. That can be disappointing and/or exciting so I will just save myself the extra energy and go into this with a clear mind. If I really need to expect something, I guess it will just be answers. 

That's all I really want for Christmas; some answers to the mystery of peculiar Miss PP. I think Santa would approve. Hopefully, I am on the "Good List" this year! 

Wiggly hugs and slobber kisses

XoX

Have a happy heart!

I was so happy after I spoke to the neurology clinic on Wednesday! They said that PP's brain was tumor-free and looked just fine. What a relief! Now we could enjoy the Thanksgiving holiday without having to discuss depressing topics. However, the big gathering we attended on Thanksgiving day got a little too big and busy for PP so it was a relatively short visit. I wished we could have stayed longer, but it turned out to be a very special family night for the three of us at home!

PP is a very particular girl when it comes to EVERYTHING! She lives on a routine and can only handle a limited amount of energizing activities at once. I was worried that we would be in this tricky situation before we even went to dinner; PP has been having difficulty lately with going into places where there are a bunch of people. She had troubles like this earlier in the year, but towards the end of summer she seemed to be improving her tolerance of animated environments. Since she has been going to preschool I can tell that the change in routine just on the weekend throws her mood slightly off balance. Thankfully, PP is entering her fourth week of preschool on Monday and I have a good feeling about it.

It has been such a treat to watch PP grow. She is so different than she was a year ago! This time last year, PP could not walk. She started walking this past Spring so this will be her first year of grabbing her own presents from under the tree, helping Mama and Papa decorate, and maybe playing the dice game at the Babcock Family X-Mas! Last year, PP didn't really play in the snow. There wasn't much snow to speak of and I was apprehensive about bringing her outside to play for various reasons. This year, we have less than an inch of snow that has stuck around and PP has already gone out to play in it twice!

She is an adventurous little lady. I can't wait to bring her sledding. 

 PP was a bit unsure about the snow pants...

...but she got over it quickly! She loves the snow!

Going Christmas shopping for her this year will be even more fun than it was last year! Now she is more able to tell me what she wants and I have a really good gist of her taste in toys and clothing. She likes to dress fancy, with glittery shirts or a tutu over tights, and she likes to pretend to be Mama. She likes to grab a broom and push it around while I do dishes, bang pots and pans together, to watch her reflection in the oven door while making goofy faces, to dance and read, wear bracelets and hats and purses, she loves anything that is outside. PP loves to look at real-live babies, dig her fingers into houseplants, and eat anything that is crunchy and/or chocolate. I could go on and on about her cute new personality traits for the fact that I have watched a tiny, sick and helpless baby turn into a very strong, energetic and happy kid in a mere three years. It is super duper awesome!

If only we could get more snow on the ground to get some of that energy out...

Chilly cheekies and toasty toesies
XoX

Happy Thanksgiving!

Happy Thanksgiving wishes to everyone!

I'm happy to be thankful for everything and everyone in my life, but I wanted to explore the giving side to the holiday this year.

Some of my attempts at giving didn't go as planned, well, none of them went as planned but that's why it's a fun story to tell! Seeing the date at the top of my computer reminds me that it IS Thanksgiving, and I've got baking and eating activities to tend to, so I'll make it short.

The funniest escapade on my giving journey through this time of year was being a bell ringer for the Salvation Army. I stood outside of my neighborhood Cub Foods for two hours ringing a bell and wishing everyone a happy holiday. It went smoothly, for the most part. The other bell ringers in the area were definitely friendly and eccentric. An older gentleman who was ringing the bell at the opposite door asked me to dinner, but I delightfully declined with a chuckle. Even the people who weren't bell ringing, but would be doing so in the near future, wanted to strike up a conversation with me. I talked about ringing bells, the weather, and how people are driving crazy for the entire duration! I almost got hit by an elderly man driving a van so I cracked wise with customers. The whole reason behind wanting to involve myself in this madness was an attempt to improve some of my social skills with complete strangers and to do a little volunteering because I miss it! Also, I seem to be forced to make a new friend every freaking day, so I need to be better at not letting my nerves make me sound like I have peanut butter in my mouth.

So there's my jab at giving.

My next jab involves crocheting and babies. Stay tuned!

I am also happy to announce that PP does NOT have anything wrong with her brain. Structurally, it is as fit as a fiddle! Thank you, ALL OF YOU, who kept us in your happy thoughts! Much love to y'all.


Hey, look at these pictures!

 We are a family of individuals!

 Waiting at the bus stop is a thrill!

Soaking up the summer sun on a bridge 

in the middle of nowhere! 

I am most thankful for the feeling of a special moment, while I might forget the event I won't ever forget the love! 

Eat turkey and be merry

XoX

I've got bats in my belly.

PP is a rockstar. She makes Mama proud every day! She is doing so well in school, playing and sharing with classmates and forming sweet relationships with her teachers. I couldn't dream of a more amazing daughter.

A 'big day' for PP can mean many different things, but tomorrow is a whole different kind of 'big day'.

I'm not usually one to be frightened of a 'big day', but I suppose my time has come.

At 6:30AM, PP will be put under general anesthesia for her second MRI scan. She had one when she was a month old, which showed nothing out of the ordinary. This MRI is a big deal because we have something to look for, which is a brain tumor. The technical term for this particular tumor is a Hypothalamic Hamartoma.

This type of tumor causes gelastic seizures. Although the neurologist isn't convinced that she has this type of Epilepsy, I told him that I will not take the chance of overlooking any information that may be helpful in figuring out PP just because it doesn't fit perfectly.

I haven't been very vocal about this procedure. I have not mentioned it to family or friends because it is very difficult for me to talk about. I know I would start to cry if I talked about it with anyone besides Papa Chris, and I don't want anyone to worry about our sweet little family. I've become accustomed to keeping a stone face in the light of terror, sometimes even smiling, because I know that everything will be OK. Thankfully, I am not the first person to go through this process and all of the stories I've read say that when this tumor is discovered it is completely curable. However, I've only read the good stories so as not to scare myself.

Read Jadyn's story.

So, this type of tumor is curable, what is there to worry about? For one, I am Mama Lace so there is always something to worry about when it comes to my baby. Two, it's a possibility of a brain tumor. Albeit a benign tumor, the stress comes from the fact that tumors and cancer can go hand in hand. Cancer runs on both sides of our family, including terminal brain cancer. Weaver syndrome by itself can cause cancers and tumors simply because it is an overgrowth syndrome; cells have more room to grow out of control and wreak havoc. I worry that we are on a slippery slope to more doctors visits and aggressive treatment methods. Thirdsies, I hate anesthesia and the thought of someone potentially sticking something into PP's brain to remove a growth is...well... do I really need to put it into words?

With that said, I feel obligated to reinforce the notion that PP is a fighter. With the recent passing of her third birthday I did a lot of reminiscing. Since the day PP was born she's had to fight for everything. She battled the odds against her and has come a long, long way. The doctors who take care of PP fight the battle alongside her. Mama and Papa are the horses to her chariot, always ready to meet the scary stuff face to face. I know that she will be alright.

Just to be on the safe side, please send us as much positive energy as you can conjure.

Keep calm and be fierce
XoX

This is a (cover) tune I could never grow tired of, listen and ask yourself "WHERE IS MY MIND?!" 

Penelope's (and Mama's) BIG DAY!

PP WENT TO HER FIRST DAY OF PRESCHOOL TODAY!

We have been preparing her for this day for a couple weeks by showing pictures of her teachers and talking about going on buses and playing with new people, whether that made a difference I have no idea. I think I was doing it for myself as well, because I needed a bit of coddling to feel comfortable with this new transition.

I mean, really, I put my two (almost three) year old on a bus with people whom we have never met to go to a school she's been to twice. That's freaking banana crazy. There's a bunch of reasons to run the other way screaming 'YOU PEOPLE ARE NUTS! I AM KEEPING MY BABY!', but those are completely my own silly reasons.

I needed to take a step back and remind myself that although this method of schooling doesn't fit for most kids, my girl has special needs. If it weren't for the Early Intervention program, little PP wouldn't be as successful as she is today. PP started using Early Intervention services when she was a month old! So technically, she's been in 'school' since she was a very tiny baby. Through the years I have seen the school system provide amazing opportunities for PP, so when the time came to make a decision about preschool it seemed only natural that she keep moving forward! The key aspect of school is to keep challenging a child so they have no option but to be the best little person they can be! The multitude of surprises along the way are thrilling.

I was very pleasantly surprised with how PP handled this brand new experience. She is so ready to learn and try new things. She showed her Mama today that worrying is for cuckoos because she didn't cry when I got off the bus after buckling her in to the seat and her teachers wrote really wonderful things about her in the parent/teacher communication book. She colored in a picture of a turkey for goodness sake! She hardly colors at home with me. I can already see that she is using her signs a little more purposefully, and she seems to have forgotten all about her sprained ankle! School is really, REALLY cool!

I feel like I've definitely earned a little break every day, but I surely won't let the time go to waste. Today I used my time wisely, gathering the things I need to celebrate PP's third birthday on Sunday with a whole bunch of family and friends! What the rest of the school days will entail for me, I'm not sure, but I have some really delightful ideas in mind. Next week my schedule is open almost every day! FINALLY! It feels so fuzzy and sweet when hard work pays off!

Positive vibes and big smiles TO ALL OF MY LOVELY READERS!
XoX

PS- I will stick some adorable photos up as soon as I can, but silly frizzy Mama Lace borrowed GG's camera and forgot to get the sync cord from her! D'OH!

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