Happy Birthday Avery!

Unbelievably our "baby" girl turns four today! It is hard to fathom that four years have passed since we brought home our 'little' ten pound bundle of joy on Christmas Eve. So much has happened in those four years. We could have never known on that blessed day how much our entire lives would change, for the better, because of this precious little girl. Avery has fought countless battles, overcome so many hurdles, and beaten odds stacked high against her. Avery fills our home with joy and laughter, keeps us constantly on our toes, and makes our lives complete. I can't begin to explain to you the love that I feel for her. Of course I love both of my girls more than life itself. . . but I love each one very differently. The love I feel for Avery is a fierce, protective love. It is all encompassing. It takes my breath away. I cry just thinking about the fact that God found me, just an ordinary girl, worthy to the mommy of such an extraordinary little girl.

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I cry just thinking too, that my "baby" isn't a baby. She's four! She goes to school two half and three full days a week and continues to master one goal after another. While the drive to her school in the city is long, the progress Avery has made makes it worth each and every mile! She has all her teachers wrapped around her finger ;) and they celebrate her milestones right along with us! Just this last week she went potty on the big girl potty for the first time and had two dry days at school! Santa is going to put some big girl underwear in her stocking and we are going to give potty training a go! She is putting puzzles together, drinking from a big girl cup, matching pictures and objects, following simple directions, knows her nose, her head, her tummy and her toes. She can imitate a ton of letter sounds, and her favorite song to sing is the "alphabet sounds song." She is sleeping through the night in her big girl bed and helping me dress her in the morning. She can buckle (and unbuckle) her car seat. She dances and claps her hands to her favorite songs. She still loves "Moe Moe" (aka-Elmo), cows, and trains. She has discovered new love for Mickey Mouse Clubhouse, carrying shoes, kitchen utensils, and Bath and Body Works lotion bottles around the house, and flushing the toilet:) She has also fallen in love with daddy's tool bench and tools this year. She has learned so much in such a short amount of time and we are so thankful that she continues to be seizure free almost every single day!

This weekend we celebrated her birthday with her Grandmas and Grandpas. As some of you know, I do love to plan a party! I love to pick a theme and sometimes go a bit overboard with decorations, party favors, and games. I had a grand idea in my head to use a "gingerbread/candy" theme for this birthday, but with Avery's birthday so close to Christmas I didn't get to do as much as I wanted with the theme. But you know what? The day was absolutely perfect.

In every single way.

For one very important reason. Avery. It wasn't the decorations, it wasn't the invitations, it wasn't my famous wrapped silverware (which were all cute-mind you:) It was the joy of one little girl and everyone in the room felt it. Avery's happiness decorated our home, her hugs and snuggles were the perfect party favors, and her giggles, peek-a-boos, and patty-cakes provided the joyful entertainment.

You can't plan that, you can't purchase that, and they are the. most. important. things.



Avery was full of joy from the moment she woke up until she crashed at the end of the day. She was so excited to see her Grandmas and Grandpas and gave big hugs to everyone and kept saying "Hiiieee!" "Hiiieee", "Yay!" "Yay!", and "Oh boy!" all afternoon! She was just so happy and excited. It was almost as if she knew that it was her special day and she loved it!!





For the past three years Avery's birthday's have been bittersweet for me. Each year for a different reason, but bittersweet none the less. We celebrated Avery's first birthday under a cloud of dread as her first brain surgery was scheduled just a few days after her birthday. I can only admit out loud now, after all these years, that many nights before her first birthday I rocked her to sleep and sobbed as silent tears fell on her sleeping face. As I sat and rocked her to sleep I allowed myself to wonder if Avery's first birthday would be her only birthday. I had this horrible fear that she wouldn't make it through the surgeries and we wouldn't get to bring her home. No mommy should ever have to contemplate these things. But contemplate I did and it was heartbreaking.

Her second birthday was interrupted by a blizzard and a nasty seizure that pretty much ruined the evening, and her third birthday was more of the same. Seizures and sadness. We tried to celebrate. We "faked it" for Kaylen's sake, and the faking hurt more than doing nothing at all. Just thinking about all of those days that were supposed to be joyous occasions, that we just managed to survive, makes me sad.

But here we are a year later, and what a difference a year makes, This year, finally, Avery was able to enjoy her birthday! And so we celebrated! We celebrated the miracle that this little girl is. We celebrate all that she has accomplished and all that she will accomplish. We gave thanks to our good and gracious God, that has blessed us beyond measure with the precious gift of our Avery Elizabeth.















Happy Birthday sweet Avery girl! Mommy loves you with a perfect love that knows no limits. Mommy will love you forever and ever to the ends of the earth. You my love, are truly amazing, and I am so very blessed to be your mommy.

It's beginning to look a lot like

Christmas! Welcome to our home! Christmas is less than a week away and I think everyone here in the Hart house is ready. Kaylen has been ready for a long, long time! November and December have been busy, busy months as usual, but we did manage to get our home decorated the weekend before Thanksgiving!

It's no secret that I absolutely LOVE Christmastime. I especially love decorating every square inch of our home in preparation for the big day! Each room kind of has its own theme and I have lots of favorite Christmas decorations, but our family room, where we spend the most time, is probably my favorite room in the house. This is where we put our Christmas tree. The tree we have is a little big for this room. We bought it for our first home in Olathe. The great room in that house was open to the second floor and the ceilings were over twenty feet tall! So we bought a ten foot tree and it still looked tiny. It looks a little bigger in this house, but it works. This is what greets you as you walk in our front door. . .



I love our "fake" fireplace and mantel. It really is the heart of our home. We sit by the fire many, many nights reading stories to the girls or just sipping a cup of hot cocoa. (O.k., let's be real, or sipping a beer- in Britton's case!:)

And our "big" Christmas tree. . .



Here's a shot of the tree with the rest of the living room lights off.



Our stocking are hung by the chimney with care!



And these little ones are ready for Santa to come down our chimney (well, o.k., through our front door:)





Wishing you a blessed Christmas and a Happy New Year!

And we have a winner. . .

Well in true Hart fashion our weekend was full of drama and ups and downs. Sweet Kaylen missed out on her school's fall festival and all the fun that comes with Halloween because she came down with a nasty bug. She managed to put on her adorable pirate costume and trick-or-treat around our block, but she came home, checked out her candy and was asleep within fifteen minutes. She didn't go to school again today, but my trusty assistant Kaylen felt up to helping me draw a name for our little blog contest!





And the winner is. . . . .




Congratulations, Laura! It looks like you have gotten a fun head start on your Christmas shopping! Thanks for all of your comments, I hope you'll stop by again sometime:)

100th Post and a Give-away!

Well, if you are reading this, you my friend, are one faithful reader of one very unfaithful blogger:) (Or you are here because my friend Bethany sent you my way:) I love this little blog o' mine, and I really do have good intentions of updating it more often, but I don't always find the time to spend updating it as much as I would like! Plus, sometimes it feels like there are only about five people reading it anyways, so why bother. Ya know?

Still, somehow I have manged to reach a very important milestone- my 100th post!

In honor of finally updating this little blog 100 times, I have a very special giveaway. . . .

You see, I have this dear friend. A dear, out of this world, amazingly talented friend. She's a party planner extraordinaire. A phenomenal photographer. An amazing listener (sometimes I barely let her get a word in edgewise during our hours long, kinda one sided, phone conversations - and I interrupt a lot. . . ) She has been there for me during some of the darkest, I mean really, really dark moments of my life. She's the one I call when it hurts so bad I think I will explode, and even though she's like halfway across the country and there's nothing she can say or do, her simple "I know." somehow makes it better. She's just too sweet for words. She deserves a post of her own and if I updated this blog oh, say, more than once every two or three weeks- I would totally dedicate an entire post to dear, sweet, Bethany. . . but for now. Let me just tell you that another one of her talents is bow-making. . . Look at this sweet cutie-pie and that adorable bow! I'll bet you know someone who would look really cute in a bow like this:)

You could win a bow like this one, just for leaving a comment at the end of this post:) (And no, commenting on my Facebook page doesn't count this time- sorry.) If you don't have a blogger account, you just comment anonymous and leave your name and email at the end. I will randomly draw a winner on Sunday afternoon- so you've got a while to get your comment in! I will then contact you and Bethany will send the bow your way. . . cause she's cool like that!

I would make a bunch of promises about updating more and being a better blogger, but I'm not sure that I could keep them. So here's your chance, leave me some comment love on this important blog-o-versary and win your cutie-pie this adorable headband and bow! (Adorable model-not included:)

Kaylen Rose

When I dreamed of being a mommy, I could have never imagined the perfect gifts God would bless me with in my sweet girls. Miss Avery certainly gets her share of attention on this little blog, because well, putting it lightly she's always up to something isn't she? But there's another little girl in this house whose little life is certainly blog-worthy.

I've tried many times to put into words how I feel about my first born, my precious Kaylen Rose and I always fall short.



You see my friends, she's nothing short of amazing, this precious girl.



For one thing, she's a riot. She's always saying something that makes Britton and I laugh out loud. Some of her favorite phrases right now include, "Oh. Come. On. People!" "Are you kidding me?!" and "Remind me what's funny about this?" (Trust me, these sayings are so much funnier coming out of her little mouth:)

When we were in Chicago I was using the restroom and I guess I was taking longer than she thought was necessary. She kept asking me, in a loud, exaggerated whisper "Mommm! Are done yet?!" Then the automatically flushing toilet in my stall flushed and she exclaimed, "Well, its about time!" Except that it wasn't. My toilet flushed underneath me for no reason. When I told Kaylen this she said, "Uhhhh Mom? I think that's the toilet's way of saying. Get off. Your time's up!"

Oh, Kayley Rose.

You crack. me. up!



Kaylen is also a very determined little person. She works so hard at anything that she puts her mind to. She was recently asked to be a part of a junior competitive dance team. While dancing doesn't come naturally to her, she works so, so hard at it. At home she goes over and over the steps and pieces of routines that she is learning in her classes, and while she's still got a long ways to go, I'm so proud of her for her work ethic. She's the same way about school. It doesn't all come easy for her but she doesn't give up. She will write a word that she misses on our practice spelling tests at least twenty-five times without me telling her to, until she gets it right.



From the time Kaylen was very little she was a generous child. Even at two, she would offer you half of her favorite snack or the last bite of something that she clearly wanted to eat herself. She is constantly worrying about "the kids who don't have enough food to eat" or "don't have very may toys," and as a result has prompted us on many occasions to drop off donations to our local Salvation Army food kitchen, and to donate to Goodwill. She truly cares about other people and worries about them. We can't even begin to think of letting her watch the news, because if she hears the inevitable "bad news" or of a tragedy she will worry about the people involved for weeks. She worries especially about her friends. When her little neighbor friends squabble, as they often do, sometimes Kaylen comes home and cries because she can't "make everything better." She worries about one of her favorite classmates who "Doesn't have many friends mommy and I don't know why because I love her." She has such a soft heart. She hates spiders, but won't let me step on them. . . (well, unless they're really big mommy!)



Probably the thing that gets to me the most is this little girl's heart and love for her sissy. We've never told Kaylen that she needs to be "a good big sister" or to take care of Avery. She just does. She has a huge heart and is so, so very protective of her sissy. Once when Avery was little she reached up for the stove when it was on, and I automatically slapped her little hand away. Kaylen came running at me, already in tears, grabbed Avery and said "Don't ever hit my sissy! She doesn't understand!"



Last Sunday night after we tucked Kaylen in and had said goodnight, I was out in the living room picking up. I heard Kaylen kind of sniffling in her room, so I peeked my head back in and to check on her. She was lying in bed in the dark, sobbing softly into her pillow. I ran to her and asked her what on earth was wrong, and she managed to choke out, "I don't want Avery to have seizures anymore! I don't want her to have to go to the hospital. I don't want you to leave and go to California again." My heart ached for my girl as I reassured her that we were going to make things better again and I held her until she fell asleep. I could only hope that I wasn't making a promise I couldn't keep. Then I picked up the pieces of my broken heart and I left her room.

(Here is Kaylen holding Avery during the week that Avery went toxic on her meds and was miserable. She didn't want anyone to touch her, and Kaylen was the only one was able to comfort her.)



We will never know the bond between sweet Kaylen and her sister, its not like just any other sisterly bond. It goes much deeper.

I wish that I had the words to explain what an amazing precious person our Kaylen Rose is. Everything I want to say about her, seems like such a cliche, but they're all so true. She's one in a million. She's an angel on earth, the apple of my eye, and the love of my life.

Kaylen Rose, do you know what an amazing little girl you are? I have never met someone who cares about other people the way you do at seven years old. You love without holding back, you give until it hurts, and you are perfect. I can only begin to imagine the amazing things God has planned for you sweetheart. I thank Him everyday for choosing me to be your mommy and I love you more than you can possibly imagine. I will love you forever.

In spite of it all

Certainly life has thrown our little family its fair share of curve balls. Just when we think the storm clouds have moved on and we hang up our umbrellas, it begins to rain. And in our family, when it rains, it usually pours.

When Avery started having seizures again a few weeks ago, I took it really hard. I cried everytime I thought about the seizures for a couple of days. I just so wanted them to be gone for good this time. I never wanted to have the conversations about the risks of brain surgery again. I didn't want to consider whether to put her on some new medication and weigh the long list of potential side effects against the chance that it might stop her seizures. I just didn't want to deal with any of it. At all. But what choice do we have?

What amazes me the most about having a child with a chronic debiliitating illness is that no matter how bad things get, no matter how much you feel like throwing in the towel. . . life goes on. There are meals to be cooked, beds to be made, and stories to be read. There are spelling words to study and dance classes and doctor's appointments. In spite of it all.

In spite of it all, our family finds reasons to be happy. Almost all the time. We smile more than we frown and we laugh more than we cry. We choose happiness.

In spite of it all we go to birthday parties.






We visit the pumpkin patch.











We plant a tree together and watch it grow.





We do homework. (With Avery's help:)



We play together.





And we love.





Some days I don't feel like I can take another second of the sadness, the worry, the stress and the hurt of watching Avery battle this disease. But then she fits a shape into a shape sorter and claps for herself, takes a drink out of a big girl cup and sets it back down on the table without spilling a drop, and smiles her big beautiful smile.

And we find a way to keep going.

In spite of it all.

Not the update I wanted to write. . .

After nearly six months of seizure freedom, Avery has had a seizure almost every day for the past week and a half. At first we hoped it was just because she has been a little under the weather, but it seems that perhaps we are facing what we feared the most. Avery's long overdue break from seizures seems to be screeching to an abrupt halt. In just a few short weeks we would have been able to celebrate six months of no seizures and it hurts so badly that we can't that I hardly even know what to say about it.

I spent the better part of two hours sobbing on my sofa and punching pillows last night. I have known for awhile now that she was having a seizure here or there (for at least the last ten days) but it didn't really sink in until last night. So if you've talked to me in the last week or so and I said that things were fine- yeah, I was still enjoying the soft comfy blanket of denial. Watching Avery seize at the kitchen table last night felt in so many ways like the very first time she had a seizure in my arms some three and a half years ago now, except that there was no shock this time around to cushion the blow. I knew instantly deep in my heart back then, before I even knew about tuberous sclerosis, that nothing would ever be right again. And it isn't. Nothing can be right when you watch your child suffer and there's no way to sugar coat that or put a positive spin on it.

Except to say that if Miss Avery has taught us anything in the last four years, it is to never, ever count her out. She has shown us time and time again that she is up for the battle and refuses to give up or feel sorry for herself. She just keeps on keepin' on, and so we have no choice but to follow her lead. We try to focus on the positives and keep things as normal as possible for her and big sissy Kaylen, who is taking this latest setback particularly hard. We try to adjust to our new normal once again while questions about what to do next, fear, and despair threaten to overtake our hearts.

Perhaps, Miss Avery is just going through a growth spurt and we need to do some adjusting to her medication. Perhaps, she still has a bug and her seizure threshold is lowered. Or perhaps she is fighting a nasty beast of a disease that is relentless in its pursuit of her. Regardless, we have no choice but to trust that she will overcome this next hurdle and to pray for her safety and complete healing.

We ask that you join us in praying that these new seizures are just a temporary setback and soon Avery will be enjoying seizure free days again.

Rooftops

For the past several days I have gone back and forth, back and forth between wanting to post an update, and not wanting to "jinx" things! Here we go again. Who would have ever thought that a crazy disease could challenge my faith in this way? (O.k., yeah, a disease like this would be a pretty obvious test for anyone’s faith!) But seriously, as I've said a million times before, I just don't believe that writing about the good brings on the bad. I don't "knock on wood" or cross my fingers. I pray.

And yet.

It seems like every time I bring you good news, I find myself following up a few days later with an urgent prayer request.

But tonight my desire to shout from the rooftops about the past few weeks has won out over my hesitancy to jinx us. So get behind me satan, because here I go!
This summer and past couple of weeks brought some amazing and exciting changes to the Hart family. First of all, we moved Avery into her big girl bed and guess what? The girl sleeps! All night. Every night. (O.k. so maybe I just knocked on the table next to me. Very softly. It hardly even counted as a knock, because you know, I wouldn't want to wake her up!:) We have even been reducing some of the sleeping medications that she takes because she seems to be so sleepy and tired in the mornings, even after sleeping all night. Notice that I said sleeping medication(s), as in plural. It really bugs me that my not even four year old takes multiple medications to help her sleep, but Avery without sleep is a very, very bad thing. We think that perhaps Little Miss Avery just wasn't "little" enough for her crib anymore and was waking herself up as she thrashed about in bed at night, because as soon as we made the switch to the big girl bed (full-size mattress) she slept, well, like a baby for the first time in her life.

Now she wakes up early in the morning (usually between 3:00 and 5:00) and comes out of her room and into ours. I actually love, love this new little routine. In the past when Avery would wake up, like every other hour, she would stand and cry in her crib until I would go and get her out. We would then sit in the rocking chair until she fell asleep again and I would attempt to lay her back down without waking her up. So the fact that she wakes up, climbs out of bed, walks down the hall and right up to my side of the bed and says "mama, mama" in her soft, sleepy little voice just melts my heart. And Daddy's too. I scoop her up and settle her in between us and she immediately scootches all the way over to Daddy's side of the bed and snuggles up to him as closely as she possibly can. Just another way this little girl has changed our lives in a big way. If it weren't for the past three plus years of total and utter sleep deprivation I would probably be complaining about this little visitor to our bed each morning, instead of rejoicing in it! While Kaylen has been known to fall asleep in our bed on occasion, or come snuggle up with us in the early morning hours, I have always been happy that she was such a good, independent (aka, in her own bed) sleeper. I think sleep and bedtime routines are so, so important for babies and children and so it has really been a struggle for us to work through these sleep issues with Avery. Letting her sleep the last few hours of the night cuddled in between us, is a dream come true! I can't tell you how many nights Britton and I have tried unsuccessfully to get her to sleep with us. To get her to sleep without us. To sleep anywhere! So yes, this has truly been an amazing blessing!

O.k. probably the most exciting change of all for our family is one that I've hinted at a few times over the last few updates. One that I've waited a long time to say. Our Avery girl is seizure free. For real. I feel confident enough that she won't have a seizure tomorrow or the next day or the day after that to say that out loud. (I might cross my fingers right now, if I could still type, and you know, if I did that. But I don't.) She did have a 45 second absence seizure (staring spell) the second day of school, but that is the only seizure we have seen in a long time. A long, long, time in Avery time. That morning we were in a big hurry and we forgot her seizure meds, so the brief absence seizure didn't surprise me. However the fact that she had a seizure soon after missing a dose tells us that her threshold for seizures is still not great. On the other hand, because of her Depakote levels being so high at the end of July- to the point of being toxic, we had to lower her dosages significantly. She is taking the least amount of medication for seizures that she has ever taken (just a low dose of Depakote) and still no seizures!

I can't even begin to describe to you what life without seizures is like, after having lived with them for so long (nearly two years of daily seizures.) How quickly we forget what those days were like. I really hoped that I would be able to update about this time that Avery was still not experiencing any seizures, because this would be exactly one month after her brain surgery that was scheduled in July. But that surgery never happened because the seizures stopped. Without surgery!! Praise God!

The other day when Avery's school asked for contact info for her neurologist I started to rattle off Cinci's phone number but couldn't. I realized that I no longer have Dr. Franz's phone number memorized. I had to look it up!! Do you realize what a startling revelation this was?! I don't have to call them a few times a week! I haven't called Dr. Franz's office in almost a month! I'll bet they miss hearing from me:)

And because Miss Avery is enjoying long stretches of seizure freedom we have made the giant step in enrolling her in a private treatment center/preschool for children with autism in the Kansas City area. Once again we are making the hour plus drive from our home to the city three times a week. It's a trek, but we truly believe that the intense therapy that Avery is receiving will be worth it in the long run. The difference this time around is that we know Avery will be able to attend consistently and I won't worry so much about her having a seizure on the way there or while she's at school. She goes for a full six and a half hour day and so far she seems to love her new school and is thriving there. (Although one day last week when I picked her up, her face lit up and she immediately turned to her teacher and said, "All done!! Uh Buh Bye!" Her bye-byes are priceless!)

We were so blessed to receive a grant from a foundation in our community that helps children with medical needs, to help with the tuition because we could have never, ever in a million years have afforded it on our own. We also could not manage the trip three times a week if it weren't for sweet friends and neighbors who watch over Kaylen before and after school while Avery and I are making our commute. They say it takes a village to raise a child, and in Avery and Kaylen's case- they've been blessed by a loving, caring village for sure! The funding and how to make the travel back and forth work are all things that we prayed about for a long time and are so grateful that God has answered these prayers abundantly!

So there you have it. We are busy, we are happy and holding onto our ever present hope that there are more good things to come for our sweet girl.

Care to join us on the rooftop!?

Flashback. . . Fast Forward Friday

As I mentioned in my Way Back When-sday post, I thought that we had lost thousands of our digital pictures stored on our hard drive when our computer crashed last summer. I have had so much fun this summer going through those "lost" photos and remembering all the precious moments those photos captured. Birthday parties, baptisms, Christmases, and brain surgeries.

Cue needle scratch across record.

Did she just say precious memories and brain surgeries in the same breath?

Yes. Brain surgeries. And while they may not be happy memories exactly, they are very powerful memories of an extremely difficult time in our life. I guess they don't make me as sad as they possibly could in light of the amazing progress our sweet girl has made since those unbelievable hard days. These images just remind me of what an amazing little gal our Avery is. She is the toughest cookie I know!

Here is Miss Avery a few days after her first surgery. I can't believe how good she looks in these pictures, considering that during the five hour surgery doctors removed part of her skull, froze it, and placed nearly-one hundred electrodes directly on the surface of her brain to monitor the nearly thirty seizures a day she was enduring every day back then.







And here is Miss Avery a few days after her second brain surgery, which took place just a week after, the first surgery. Now here, she looks miserable, and she was. During this second surgery doctors removed a large portion of her left frontal lobe. Miracoulsy, Avery did not suffer any permanent loss of function and quickly regained the skills she lost during her long recovery.





She is a miracle isn't she?

Considering we almost lost our sweet girl after that second surgery to a blood clot in her femoral artery (from a central line that was placed during the surgery.) Avery's condition became critical when that blood clot in her groin decided to migrate to her lungs and become a pulmonary embolism. Yeah, those were tough days.

But when I look at these images, I don't feel sad. I am only reminded of what a fighter my sweet girl is. I am reminded of how blessed we are that she is sleeping soundly in her big girl bed and that she is full of life and spunkier than ever.

She's a miracle isn't she?

Fast Forward to today and here is Miss Avery now! (photo courtesty of Bethany) She is so beautiful, it takes my breath away and I am so very proud of how far she's come in the last three years.



Avery girl, you never fail to amaze mommy with your strength and courage. You refuse to let all the yuckyiness you have to deal with get you down. You just keep fighting and Mommy couldn't love you more. You are may hero and I am so proud of you baby girl! God surely has amazing plans for your little life!