Try your best.

I have not been feeling up to the task of writing whatsoever, but I have received some interesting emails within the past few months and they inspired me to write again. From the bottom of my heart I want to thank you, readers, for encouraging us and sharing your stories with me. I know now that I am not the only one going through tough times, and although it makes me sad to hear your stories, it fills me with strength because I am not alone. 

Having a disabled child is tough.

Special children put a special kind of stress on the hearts of their parents; while filling your soul with incomprehensible love, any morsel of energy you can conjure will go to anything that child needs, and they always need more. Providing for someone with extra needs will change the way you live in every other aspect of your life and that's not always easy to deal with. It can be daunting to find balance between parenting, working, and taking care of yourself when one area dominates all others. For a while now, it has been seemingly impossible to get to a happy medium between being PP's mama, working and keeping close relationships intact. It's been so hard, that Papa Chris and I are no longer together. He and I tried our best, but we just couldn't keep going. Neither one of us places any blame on PP (make note of that) but it's the way that we handled ourselves that couldn't continue. I think he and I are courageous for trying our best and knowing for sure when it's time for change, but if you think differently, please keep your thoughts to yourself. 

With that said, I bet you all are wondering what PP has been up to this summer...she's been busy!

PP has obviously been affected by the change in family dynamics, but it's easy to see that she is still a very happy little girl. She has been a light in the dark for me and that laugh just melts my heart every time. PP loves playing pretend tea party, feeding her dolls and sharing her 'treats' and 'drinks' with whomever is near. She loves to go float around in lakes with her fancy blow-up chair and eat snacks on the beach towels, she may even eat some sand! Just kidding, she ALWAYS eats the sand! She loves to look for airplanes and make dinosaur/elephant/motorcycle/pig noises. PP is an ornery love-bug who won't do what you ask her to do just because it wasn't her idea, and she thinks it's hilarious when someone sneezes or coughs. She likes to flirt with her uncles and is painfully shy with strangers. She is learning to warm up to people a little more quickly these days tho, which is fun to watch for the strangers reaction. I have been tanning my hide when it comes to dealing with strangers as well. I am not quite so apprehensive to talk to people if they ask questions. I can laugh at and quickly disregard those who just want to be rude. Going into single-parent-hood has forced me to step outside of my comfort zone in every way and I like the progress I am making. PP needs someone who can handle the biz. I know I can do that for her if I try. 

PP needs a Mama who will work tirelessly to ensure her success. I feel like it is my job to buoy her love of learning, but it can be a challenge. For about 9 months she and I have been going to therapy at Children's Hospital three times a week, but it was hard to see any progress from PP in speech or occupational therapy. This was disheartening. I could see her growing in her own ways every week, but when it came to skills that can be measured, PP seemed to stagnate. In some ways, she 'unlearned' a few skills. Her difficult behaviors increased as well, making therapy even more exhausting, leading me to question whether or not it was worth the effort. After careful discussion with the therapist from each discipline, we decided that it would be best for PP to only focus on physical therapy at the hospital while receiving therapy services in preschool which would begin in September. There's no point in dragging her through therapy, so we will try again in about 6 months to see what she will do. Now it's time to focus on school and getting into a new routine, which I am SO excited for. Thank goodness life always moves forward. 

Heads up, thumbs up, keep smiling! 

XoX

Bittersweet Fix-it Steve.

Forgive me, readers, for I have sinned. It has been 35 days since my last blog post. My computer is old, fritzy and slightly broken (which is just the way I like my belongings) but this smooth, new iPad works alright to write on. I guess.

Anyways...

My apartment/duplex is very old and is continuing to fall apart. Despite its shortcomings, I love this place and have no desire to leave any time soon, so I asked my landlord to help us out. He sent over his brothers wifes father, who is the go-to guy for fixing stuff around the units owned by my landlord and his brother. He replaced my floody window and my broke-ass kitchen faucet, but he also did a little unplanned work on my heart strings.

He met PP last week. I was surprised at how comfortable she acted around him. She usually shies away from anyone new, but not Fix-it Steve. I couldn't believe it! I thought to myself, "It has to be the tools." She loves tools and he has plenty of them. Maybe it was his smile, or the way he introduced himself and explained to her what he was doing in her house. I couldn't put my finger on it until today.

He came over with Coffee Bob at about 11 this morning. I was busy sending PP off to school when he started telling me about his daughter. She has a very rare syndrome, of which I can't remember the name, she is nearly blind and had a cleft palate. I told him about PP and we shared a few horror stories about surgeries and doctors visits. He told me his daughter is 25 years old now and has a boyfriend, which would have made me cry if I wasn't such a Maverick at holding it back. Then he said, "I just wanted you to know that I know what you're going through. You aren't alone." Then he looked away and threw up his left hand, as if he were Jackie Channing the tears away. I bit my lip. I wasn't expecting that conversation whatsoever, but my heart was filled to the brim and I am glad it happened. I realize now that PP could see that he was genuine, and adept at dealing with the unusual.

I sent PP off to school then sat on my couch to crochet while Steve and Bob fixed the broken things in my house. I listened to their conversations, and I could tell they listened to me sing quietly along with the radio. It was peaceful and I enjoyed it thoroughly.

Shortly after PP came home, I got a phone call from her teacher, Amy. She told me about an unusual laughing episode that PP had at the end of the day. She was worried that it was a seizure, so I took notes and asked her to follow protocol if it happened again. I felt helpless and frustrated, I'm sure my voice gave that away. I knew Steve and Bob heard my conversation. I called Papa Chris soon after to fill him in on what had happened and I knew that Steve and Bob heard that conversation, too.

Without realizing it, as I crawled back onto my couch, I crawled into my head. I was trying to sort out my feelings and what to do next. My brain was going a hundred miles an hour on a loop between 'NO EPILEPSY' and 'WHAT THE F@^!', but my body was still and I was facing the hallway, staring at the wall. PP was on the floor playing with toys like a perfect tiny lady. Steve walked by us in the hallway and he snapped me out of the haze. He was only there for a couple seconds, but his eye caught my gaze with an expression that I have never seen before. No one had ever caught me staring like that; he knew what it meant. His face was painfully understanding and honestly sorry, for what I can't be sure. I can't even explain it properly. He just understood. Then he went down to the basement to get his tools while I went to the floor to play toy cars with PP. Eventually, they finished their work and promised to come back soon to fix the leaky, money-abyss that is my shower. I feel like breaking things so they come back sooner.

Sometimes there are no right words that can be said. Just being in the presence of someone who understands "what it's like" is enough. I am so grateful for people like Fix-it Steve. I strive to be as brave as he is, to relate people through PP even though it's hard to do. I am also in debt to people like Coffee Bob: those who stick around the Fix-it Steves through all the weird stuff.

This ones for you, Kay-see-vee.
XoX

Whizbangalang.

Sometimes, life is slow. I like being slow. It's good for my mind. The opportunity to have a good look at my life, and truly relish in every one of my riches, is a necessity to avoid floating off into space. However, eventually, I get bored. It is fun to float amongst the stars once in a while.

Keep in mind that being slow in this house does not mean that we aren't busy! It means that PP (that always includes Mama) is not crammed to the gills with doctors appointments or hospital stays, we aren't expected to be here and there and everywhere for all sorts of reasons; instead we pick play dates and outings at our leisure. A lull in this house means PP going to school every day and attending therapy some days, Papa working long hours leaving me and PP to our own devices for what seems to be days at a time. I will admit that it takes a lot of energy to keep my family members and our sanity in their appropriate places from day to day! We work hard through the truly busy weeks and I know that we all need the slow times, but we also need a reward. I love that part of it. 

As you might guess, the reward for PP was handed out first! For roughly the past nine months, PP has attended therapy sessions at Children's Hospital from two to three times a week. Although we have seen changes in the way PP behaves and communicates, she stagnates with developing new skills for long periods of time. After much discussion, the therapists and myself decided it would be a good decision to put hospital therapies on hiatus until April. This gives PP a chance to settle into a more consistent weekly regimen between home and school and to hopefully be ready to move forward developmentally when hospital therapy restarts. 

This is a good thing because it gives her a chance to have a set routine for 5 days straight. As far as I can tell, PP has not grasped the concept of tomorrow or next week or the difference between a weekday and a weekend. This makes it hard for me to explain to her why she doesn't go to school on Saturday or Sunday, which can be really upsetting. During the weekend, she doesn't understand that she will go to school on Monday, but that she would also have therapy on that day. If, on Sunday, I said she wouldn't go to therapy on Tuesday, she wouldn't know what I was talking about at all. However, after Monday rolls around to reintroduce therapy and school for the week, the typically uneventful Tuesday can wreak havoc on everyones nerves. PP can ball up a lot of energy that may explode unexpectedly! Wednesday would be another therapy day, which was usually a crabby day because of a bad nightmare, a lack of coffee, or residual crabby faces from Tuesday. That would be the last of therapy days for the week, leaving a smoother Thursday and Friday, but that leaves only two days before the confusing weekend starts again! It can be quite a nasty cycle. The 'slow' times are sometimes harder than the busy times when they just drag on. 

This is our first week without therapy and I will say only that everyone seems to be enjoying it; I don't want to jinx it! Having our mornings together as a family, not feeling rushed and not having to juggle our only car quite so much has been lovely and soothing on my nerves. 

I am looking forward to this weekend in particular because I am taking a "Me" weekend. My friend Kate and I are flying to Chicago early Friday morning! We will be visiting some of her family and seeing the sights. This trip is a big deal for me! I have not been on a vacation in about 5 years. In the past 4 1/2 years I have never had a recreational weekend away from my family, EVER! I am nervous, duh, but I am at a point in parenthood that I know I can relax and know that my family is safe even if I am not being a big bossy umbrella Mama. I am at the point where I *NEED* this weekend. I am 100% happy if Papa goes out with his friends because I know he won't do stupid things like drive drunk or get into shenanigans, but he will definitely enjoy himself and that's important. I am 100% OK with PP staying up late, eating too much pizza or not taking a bath because she is going to be surrounded on all sides by her adoring family; they love her and she loves them. 

This weekend is going to be epic. 

Next week will be epic as well: I am in charge of Valentines Day, 'nuff said. 

The last week in February marks the beginning of Chris - n - Lacey's birthday season. Our birthdays are six days apart! This year is a BIG deal because Chris is celebrating his golden birthday and I am celebrating my 25th. We will wear gold-somethings and I will rent a car, or not! Hooray for growing older! But seriously, I am very thankful to be turning 25. I will wear it proudly. 

That brings my calendar up to the first week in March, and I could go on further, but you (and I) will just have to wait and see what happens! I am sure it will be entertaining. 

Bonsoir, belle jour!

XoX 

Happy freaking New Year.

Closing down 2012 was quite an ordeal.

It all started on the 18th when PP and I went in to St. Paul Children's to start her first inpatient EEG. This test got off to a rough start because PP didn't like the process for applying electrodes to her head or being tied to a 35 foot cord, but we managed.

In this picture, PPs has the first batch of electrodes on her head. 

She is exploring her hospital room and wondering which infuriating situation to blame Mama for next...

At around 6PM I noticed an unusual rash on PP's face and she was running a fever. Turns out, she was very sick with some sort of viral infection. The EEG testing had to be stopped before we got any information from it, and she was kept in the hospital for a day to be monitored.

Mama trying to keep PP calm between nurses' poking and prodding. 

The testing was a big "FAIL" but I was glad to be released from the hospital in time to celebrate Christmas with our family. PP would resume EEG testing for Epilepsy the day after Christmas and that sounded just fine to me.

Christmas was really, really fun! PP's cousin, Lil Kenny, exclaimed that it was "THE BEST CHRISTMAS EVER!" He's four, so he doesn't have much to compare it to, but it was definitely a good time! We made the rounds for four Christmas celebrations and it went better than I could have expected. I know that my little family really needed that special time!

PP likes to be festive.

Wednesday the 26th, Papa Chris and I brought PP back over to St. Paul for round two of EEG testing. I was confident that it would go to plan because PP's viral symptoms were almost completely gone, and the only remaining signs were residual and minimal. Applying the electrodes was still a difficult task, but she handled it better than the first time.

Snapping really embarrassing pictures of children: it's what parents live for. 

This is PPs second round of electrodes! 

Shortly after the electrodes were applied, PP demonstrated every behavior that was in question for seizure activity and as it turned out, there were no seizures recorded on the EEG! This was fantastic news on so many levels: This round of testing only took one day so we were discharged on the 27th, PP is being weaned off of her anti-convulsant, she doesn't have epilepsy, and we don't have to do an EEG again unless there is concern for seizure activity in the future! She does have an emergency medication just in case she has a seizure, but I doubt we will ever have to use it. Best Christmas gift EVER!

Then it hit...

The abominable stomach flu. My poor little girl was its victim. She spent most of Friday laying on the floor, vomiting and having diarrhea. She took cat naps throughout the day, but when she was awake she acted miserable.

This was the first time I had ever watched PP sleep on a floor. 

She was pitiful and incredibly sick!

I was certain it was a stomach bug and I thought I could handle it at home, but I was wrong. By Saturday she went from being able to crawl across the floor to not being able to sit for more than a few seconds because she was so weak. She couldn't keep anything down without the help of an anti-emetic, but she had nearly no appetite anyway. I was force feeding her Pedialyte and water with a syringe to keep her hydrated, but her excessively lethargic demeanor was alarming. Saturday evening we called the Triage Nurse line, which is our usual protocol before going into the ER, but they were busy so I had to leave a message and wait for them to call me back. Mama and Papa don't like to wait for things like that, so we packed up and headed over to Children's Hospital in Minneapolis. When we were about a block from the hospital I got the phone call from a Triage Nurse and what she told me to do sent me into a tizzy. In a nutshell she told me, "From the information you told me, my advice to you is to pull over and call 911. Your daughter needs you to call 911 right now." I hung up and called 911, but when the operator started asking simple questions I started crying. I felt like an idiot, but I have never been told to call 911 for PP and it scared me! I quickly handed the phone to Papa and he handled it like a champ. He and the operator decided that the quickest way to get PP to the hospital was for us to keep driving and bring her in ourselves. We were placed at the front of the line thanks to the 911 operator and we got a room in the ER very quickly. The doctor ordered a bunch of tests ranging from a urine sample to and EKG, he didn't want to miss anything and I was very thankful for that. The test results gave the doctor proper grounds to call PPs illness a severe case of a stomach flu virus that has been floating around for the past few weeks.

I wish I could look that cute after day four of uncontrollable barfing, pooping, sleeping and not bathing! 

It's alright tho, neither Mama nor Papa got the flu.

PP was admitted to the hospital to receive IV fluids and close monitoring on December 30; she had already been sick for two days. She was discharged on January 1st, 2013, ending a 5 day flu bug and beginning a day full of good vibes!

New Year, new (or maybe just improved) immune system is our cheer!

Hello 2013.
XoX

Keeping spirits bright: just call me Mama Jingle Bell.

I'll be honest, I would rather be enjoying my beer in a semi-comatose state while watching my favorite movie. You could say I am celebrating the Winter Solstice a little early, but some people have told me that tomorrow the world will end so I am trying to get in all the good stuff, just in case! On the other hand, if it doesn't all come crashing down tomorrow, I would like to have this post written and read tonight! My trade off is that this post will be half assed...sort of.

No frillies tonight.

Last weekend:
Papa Chris came down with some wicked stomach pain at the worst time of night...when he was sleeping. It woke him up and was bad enough to warrant a trip to the ER, which eventually shed light on some gallstones that had to be removed. He scheduled a surgery for Thursday (today) to have his whole gallbladder removed and he will be getting some of the gallstones next week as a souvenir for the whole ordeal. Yeah, it's gross and funny and it calls for a lot of "GAHH CHRIS" from Mama Lace.

Monday:
Normal day as far as I can remember.

Tuesday:
PP and I made our way over to Children's Hospital in St. Paul to start her inpatient EEG at 9:30AM. We met Chris Kluwe, the punter for the Vikings, which was a REAL BIG treat and I don't pay any attention whatsoever to the Vikings! Everything was going just fine until about 6PM. PP came down with a fever and a rash-like patch on one side of her face which led to some PP-unfriendly tests to figure out what was going on. She and I had a very terrible night. We hardly slept. Collectively, I am guess-timating that we got about 4 hours of sleep and we were both miserable the entire time. I ended up sleeping in her bed and half my body was numb all night, but being tired trumped being numb. Ish. She had a hacking cough, booger-full nose, a high fever and needed oxygen a few times. Ish.

Wednesday:
Santa came to visit with some Marines, but PP couldn't get anywhere near him because she was quarantined to her room. He HO-HO-HO'ed at us from the doorway. Santa was not willing to put on a yellow paper gown, mask and gloves so there would be no sitting on his lap to read off her Christmas list. This was her first time seeing Santa.

Shortly after Santa's disappointing visit, PP did more testing to see what was making her so sick. We were informed of test results throughout the day, all of which came back negative for things that make you sick. The doctors ruled it a viral infection, stopped the EEG test for various reasons, and decided to keep PP in the hospital one more night to monitor her oxygen/blood levels. Sadly, we didn't get any useful information from the EEG. On the bright side, during the day PP made vast improvements from the night before, so I was counting a better night than the previous. At least she didn't have to sleep with electrodes stuck to her head again. We ended up having a much better night, only waking about 4 times for inadequate blood/oxygen levels that she quickly corrected by herself by taking a deep breath.

Thursday (today):
Papa Chris had his gallbladder removed early in the morning. PP woke at 8AM making me a very happy Mama. WE GOT TO SLEEP! We hung out all morning at the hospital. PP was at her baseline: running around, playing, eating and drinking normally, being cute. It was such a relief to see her back to her old self. I hate seeing her sick! We were discharged around 1PM today. We happily went home, did some dailies and then we went to go visit Papa Chris who is recovering from his gallbladder surgery with his amazingly accommodating dad and step-mom. PP is scheduled to return to the hospital on Wednesday after Christmas to take another try at the EEG.

At this very moment, PP is sleeping soundly. Her cough is subdued because I finally figured out that a teaspoon (5mL) of plain old honey works wonders for a hack-an-a-half. Papa Chris is probably playing video games or doing something tech-y with his Papa, so I know he's having a good night. I am just finishing up my much deserved (second) beer and listening to the new Father John Misty album, which is too wonderful to describe with words...I'd have to dance out my love for this album. I am trying to figure out my favorite movie, but all I know is that it has to be good if it is going to potentially be the last movie I ever see.

Doomsday, Solstice, Friday, whatevs.

That's it.
XoX

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