A Tiny (Trivial) Tantrum

Let me preface by saying I'm trying really hard not to be a whiner. I'm trying to be grateful that we're not sitting in a hospital room. I'm trying not to be bitter about the cesspool that is daycare. Seriously, though - give my girl a break! M now has pink eye. Yup, pneumonia to back-to-back upper respiratory infections, to pink eye. Don't get me wrong all of these things are way better than shunt failures, hemorrhages, and blood infections so I'm not complaining....really. I just want her to have a week or so of health! Is that too much to ask? Tantrum over.

Final....FINALLY!

It's been a looooong time coming, but M's adoption is finally final! There was a lot involved with coordinating finalization via video conference. Mostly that the State of Louisiana doesn't allow finalizations to occur anywhere but in the courtroom of the sending agency's Parish. Thanks to our SW and Attorney well-written appeal, the judge granted an exception to our case. So, this morning, Via Skype, our case was heard, the decree was signed and M was declared an official Fenske!

And she's rolling.....

....almost! Yesterday, M got a little crazy and started doing a sort of "half-roll." Usually, you could place her in any position, no matter how bizarre, and she'd just lie there. She does not typically have the strength or coordination to get herself into or out of any position. Well, yesterday, when placed on her side, almost to her stomach, she would consistently roll herself to her back. Her therapist was absolutely thrilled and of course, she did it for Daddy several times last night. This is a HUGE accomplishment for her!

In other news, her new wheels have been approved to 80% by our primary insurance. Now we just have to wait for her MA to process the remaining, then we can get an order placed. This is the chair we've decided to go with, although not in this color. It will be a relief to finally have a chair to put her in where she doesn't flop forward, backward and side-to-side. She can be....get this....comfortable AND safe! Unfortunately, our request for an adaptive bath seat has been denied as a "convenience item." Apparently, trying to bathe a wet, soaped-up, slippery 20lb child with no tone who's unable to control her movements is merely an inconvenience. If you ask me (who happens to bathe her), it is down right dangerous. Then again, I don't have the vast educational knowledge on these things like an insurance underwriter does. Bitter? Me? No way! I digress. We still have a slim chance that MA will approve it. If they don't we'll have yet another (very large) out-of-pocket expense. Gotta love insurance companies!

C-L-U-T-Z

This is what happens when you carry two children, a bag, and a bunch of papers while simultaneously trying to remote open the van doors in a parking lot full of holes:


Not broken - THANK GOODNESS! Just a really bad sprain.

Prayers Needed

There is another beautiful, sweet Marissa out there who needs some prayers. This amazing little girl (and her amazing family) is preparing to embark upon a very difficult new leg of their journey with IS/Epilepsy. Please take some time this weekend to pray for them and the doctors that will be caring for her.

CLICK HERE TO READ HER STORY

You just have no idea how grateful we are to see these! A very short time ago, M was so trapped inside herself. Seizure control has really brought out her happiness. In other news - the last picture is my first shot at an actual hairdo. She still doesn't have much to work with, but it turned it out way cuter than I thought it was going to.

Where did it go?

It is AUGUST! How did that happen? I have no idea where this summer (or this year, for that matter) has gone. In two short months, it will be time for us to lock ourselves down in our house and pray for a winter of good health. Yup - I know some of you are shaking your heads already; thinking "she's insane - kids NEED germs to build up their immune systems." You probably don't have a medically fragile child. You probably don't need to worry that that "little cold or 24 hour stomach bug" could be fatal to your child. Flu and RSV season is rapidly approaching and I won't lie, it frightens me. We spent 3 months in the hospital last winter (and we know what a germ factory hospitals are). Yet, M managed to not even get a single cold all season. She got her first cold in April one week after starting daycare. She was sick again in May - thanks to daycare and she had pneumonia in July.....again....daycare. Currently she has more upper respiratory crap. Luckily, none of these infections have landed her in the hospital. Winter is a frightening time for parents with medically fragile children. Please, as the season looms near, remember those with children who may not be as strong as yours. Respect them and respect their wishes. WASH YOUR HANDS and don't roll your eyes if they come at you with a bottle of hand sanitizer. Please keep your children home when they are ill. Please, if you are ill or have been ill, or have been around someone who has been ill, postpone visits to loved ones who are at high risk. I'm hoping we survive the winter with few illnesses and, dare I say, zero trips to the hospital.



In other news, I'm happy (and scared to death) to report that next month I will be changing from full-time to fill-in status at work. This means that I will likely only work 8-16 hours per week. The kids will be at home either with a family member (hopefully) or a sitter when I'm at work. NO MORE DAYCARE!!!! I have NEVER not worked full-time. I'm frightened to give up all the benefits that my job offers. I'm frightened that I won't be a great SAHM. I'm frightened that Kevin is going to feel overwhelmed with the burden of being the primary breadwinner. Financially, it is going to be beyond tight. Yet, the thought of being with my kids, who are growing up waaay too fast, and being able to go to every appointment or every field trip and have time to enjoy them is so incredibly exciting to me. The thought of being able to be there for M, to work with her more, to give her every opportunity she deserves is such a gift. E will be at 4K from 8-11:15 Mon-Thurs. That gives M and I a nice amount of time for daily therapy. I'm so looking forward to spending un-rushed time with both of my children. I saw this posted on another blog and it really describes how I feel (sorry, Honey, I know you hate poems).

I Took His Hand and Followed

Mrs. Roy L. Peifer

My dishes went unwashed today,
I didn't make the bed,
I took his hand and followed
Where his eager footsteps led.
Oh yes, we went adventuring,
My little son and I...
Exploring all the great outdoors
Beneath the summer sky
We waded in a crystal stream,
We wandered through a wood...
My kitchen wasn't swept today
But life was gay and good.
We found a cool, sun-dappled glade
And now my small son knows
How Mother Bunny hides her nest,
Where jack-in-the-pulpit grows.
We watched a robin feed her young,
We climbed a sunlit hill...
Saw cloud-sheep scamper through the sky,
We plucked a daffodil.
That my house was neglected,
That I didn't brush the stairs,
In twenty years, no one on earth
Will know, or even care.
But that I've helped my little boy
To noble manhood grow,
In twenty years, the whole wide world
May look and see and know.

Mothers Lie
By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is.

They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule.

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.

She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.

That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.

Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.

Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes.

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.

From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

Answered Prayers, Summer Pneumonia and Plan B

The sweet little boy I wrote about last week has a family! A paper-ready family was found for Monroe and God willing, he should be home by Christmas! Now, only about two million more to go!

Sweet baby M has pneumonia (since Tuesday). E also now has a high fever and runny nose, too. I’d like to personally thank the idiotic parents who insist upon bringing their sick kids to daycare jacked up on Ibuprofen and Tylenol to disguise their fevers so they can share their funky diseases with all the healthy children. Our daycare, like most others, has specific rules related to illnesses. As long as there is no fever and only one symptom they don’t send the kids home. M is kept “secluded” to some extent, but I suspect a lack of good hygiene on the part of the teachers is responsible for the transfer of germs. FRUSTRATING!! It also saddens me that parents don’t care enough about their kids to keep them home when they are ill so they can heal. I digress…..

I saw a quote a couple of weeks back – actually when Kevin and I were out on our date. I saw it on a coffee mug or something and when I read it, I felt like someone had just summed up my life in one, short sentence. It said: “Life is all about how you handle Plan B.” For some strange reason, saying it out loud brings an eerie sense of peace to me. Maybe it sounds silly, but it gives me courage to think about doing things that I would not otherwise consider and reminds me of all the things I’ve already done that were “not according to plan.”

When I look back on my plans for my life – none of them included living in a tiny community of 700 people, working full-time in a lab, and adopting three special needs children of different races. My plans most certainly did not involve driving a minivan! I recall picturing myself married, with two kids who looked just like me, living in a moderately sized city, driving a sporty SUV, taking vacations and wearing semi-stylish clothes. What I don’t recall is imagining myself as happy or as satisfied as I am right now. Every day I wake up amazed that I am Mom to the greatest kids in the world, married to the most wonderful husband in the world. I don’t have any desire for that sporty, new SUV or new clothes. I don’t miss going on big vacations. I love, and I do mean LOVE our home and our sleepy, little town. Don’t get me wrong, it’s not all roses and sunshine, but for the most part, I am truly happy. There is one area of my life that plagues me; one thing I desperately want to change – I (we) feel courageous enough to set out to do it, now. We pray we’ll receive non-judgmental, unconditional support from those closest to us, but know that even if we don’t, we will be doing what’s best for the little people that are most important to us. In the coming months, there is likely going to be some big changes for the Fenske Family. I’m a little scared, a little uncertain and at the same time, quite excited. Stay tuned………………

We had a little party on her actual birthday. This is what seizure-free happiness sounds like in M's world. It started coming out about a week ago and is music to our ears!

You want me to wear WHAT???

Okay, fine, take the picture, but I'm not happy about it.

Unfortunately, she fell fast asleep before the cake. She does it without much warning these days. Sweet big brother helped her blow out her candle, though. :)


The legs of a dancer!


First swing at a pinata.

What an exhausting day!

PLEASE help if you can!!

I beg you to go to this link and read about this incredible little boy. If you or someone you know is considering special needs adoption, this little guy may just be the child you're looking for. His situation is critically urgent! Please post to your blogs - perhaps by getting the word out, we can find this little guy's family.

http://www.nogreaterjoymom.com/2010/07/im-pleading.html

Happy Birthday, Doll Face!

One year ago today a great fighter came into this world at 25 weeks gestation weighing a hefty 1lb 7oz, measuring a whopping 14in long. Little did anyone know she'd not only survive her birth, but survive resuscitation, 3 1/2 months on a ventilator, 3 intraventricular hemorrhages, 14 neurosurgeries, sepsis, 2 throat surgeries, catastrophic epilepsy, cerebral palsy, and cortical vision impairment. She was born with a future so uncertain, in fragile health and with no family to love her. No one could've imagined that tiny person would grow into such a strong (19 lbs 26 1/2 in), loving, amazingly spirited little girl. I am so in awe of her every day. I am in awe of all she's been through and all she continues to go through. I am in awe of her smile and her giggle. I'm in awe of how hard she works and how determined she is to get her uncooperative little body to do the things she wants it to do. Mostly I am SO GRATEFUL that she found us. I cannot imagine my life or our family without her.

Happy Birthday my sweet, gorgeous Doll Face!!

I promise to post birthday pictures soon!

A Great Weekend

Date night was AWESOME! It was so nice, and to be honest, very strange to be out without children. I took Kevin HERE and it was really cool. The food was incredible and the show was great!

Yesterday we spent the whole day together as a family. We looked at 8 houses and realized that apparently no one cares about their homes like we do. So many of them were filthy and in disrepair. I just don't get it. Most of them didn't have great yards, either. We are so spoiled where we live right now. It made me want to find a way to make our totally unaccessible, raised ranch accessible for M as she grows and nix the idea of moving altogether.

When we got home we got the kids in their swimsuits and spent some time in the pool. I even waterproofed M's central line site with multiple layers of Tegaderm and Aquagard and put her in the little floating boat we bought her. It took some finagling to get her propped up comfortably, but once she was in there, she loved it. She moved and kicked her legs so smoothly and easily under the water. I definitely think we'll be spending some time at "water therapy" - it has to feel great on her joints and muscles. We played outside a bit, grilled out and had a great Sunday evening.

Keeping it All Together

It is a well known fact that, on average, 50% of marriages these days end in divorce. That is a HUGE number, I think. It is, however, a little known fact that 85-90% of marriages involving the raising of a child with special needs end in divorce. 85-90%! That statistic is staggering! We've been told in the past related to surviving infertility and making it through difficult/lengthy adoption processes – “this will make or break your marriage.” We’ve survived both-quite gracefully I might add! I guess I never gave much thought to it with regards to raising our children.

People ask us all the time how we do it. We don’t really ever have a good answer. It is life – our life – that we chose – we just do it. We don’t really know anything different. I can see, though (hindsight is always 20/20), that it HAS changed our marriage. I can’t say that it has damaged it, ruined it, made it unhealthy or unhappy; it has just made it.........different. I realized recently that the last time Kevin and I spent any time alone together was on our flight to New Orleans on October 31, 2009, to adopt M. Yes, it is true – that was the last time! This is due in part to the needs of our children (having one hospitalized for 10 straight weeks didn’t help), in part to lack of finances, in part to being just plain too exhausted, and in part the difficulty of arranging care for a child with multiple medical needs. It’s not that I don’t trust people; it’s that people don’t get how significant M’s needs are. They look at her and see that she’s cute, she’s chubby, she smiles, she sleeps, she eats, she poops, typical baby, right? They don’t understand that she could have a shunt failure at any moment, that she could be exposed to an illness that a “healthy” child could fight off but would land her in the hospital, that pulling her arm or leg the wrong way to dress her or lift her up could pop it out of it’s socket because her joints are so loose or cause her great pain because her muscles are tight. They don’t understand that losing a couple drops of her medication could mean that she spirals into a pattern of seizures that we can’t get controlled, or that her vision impairment makes changes to her environment much scarier than for sighted children. It is exhausting to try and “prove” to others that she has significant needs; that they can’t “blow off” what I’m saying as me being an overprotective mother or a worry wart.


It is not that we don’t love each other, that we don’t enjoy each other’s company, it’s just that “we” has taken on a whole new meaning. I don’t really like to use the word “sacrifice”. That insinuates that I feel we’re missing out on something and I really don’t feel that way. We don’t vacation, we don’t eat out, we don’t buy new clothes, we don’t drive new cars and I’m okay with all of that. I don’t need any of those things. What I NEED is for my family to be happy and as healthy as possible. M’s new medication has really brought her out of herself. She interacts, is smiling and is laughing. Those moments make the hours I spend on the phone fighting for coverage for equipment and medications all worthwhile. Just last night I said to Kevin, “I honestly don’t care how things end up as long as she is able to find happiness in her own way.” That doesn’t mean I’m going to stop fighting for her or looking for treatments to improve her life and health. It just means that there is nothing more important than happiness and joy.

I realize that goes for me and Kevin, too. Without our health, happiness and mental stability, we are not going to be able to continue to give 100% to our family. We are obviously still struggling a bit to find the balance. That said, we are….get this….going on a date!! Yup – I made the decision last week that one night out alone together would be a very good investment. I can’t give you any details because it’s a surprise for my darling husband, but I have no doubt it will be a great evening!

Meet our new friend........

SABRIL





Under normal circum-stances I am NOT one to count my proverbial chickens... you know how it goes. I will admit, I am one who traditionally worries about the 'what ifs'. That said, today was a VERY GOOD DAY! We deserve to celebrate it! For the last two days, her clusters of spasms have been better. She is still having them, but they are nearly undetectable - to the untrained eye, that is. She has been...get this...awake, alert, SMILING, squealing and today, in like five minutes time, she learned how to eat! Yup - you heard it folks - she is EATING FOOD before her first birthday!!
(No, she is not feeding herself, but likes to play with the spoon while she eats). She is also sitting up in this chair with only the aid of a seat belt, tray and a couple towel rolls. THAT is amazing in itself!!


We had an awesome eval with an actual, real live rehabilitation physician who was incredible! She is getting us hooked up with absolutely everything we could ever need. For starters, M is sporting a "Johnny Cool" (yes, that IS it's real name) thumb splint - VERY stylish. Amazingly, her little hand is open and relaxed, not clutched into a tight, painful, little ball. The clonus in her left leg is a little worse and she is now showing it in her right leg as well. Previously her entire right side appeared unaffected. For now, because of her small size, we're holding off on braces, but they will most likely come down the road. We are going to up her stretching and PT to try and keep her a little looser.

To top it all off, she has been sleeping - ALL NIGHT LONG!!!!

I know to the mom with an "average" child, these things seem trivial, but to me - they are incredible miracles!!

We're praying we continue to see improvement or at least stability for a while.

I just bounced back to read THIS. As I said back then: BRING IT!!!!!

Two years....

...that you've been waiting

...and we've been trying

...that you've been suffering

...and we've been hoping

...that you've been alone

...that we've been praying


Happy birthday, sweet girl. Thank you for being strong. Thank you for being patient. Thank you for keeping your spirit in spite of your circumstance. I hope one day that you will feel the love of our family. I hope that you will look back and realize that even when you were all alone, we never stopped thinking of you and fighting for you.


Your brother (with a little help from Mommy) made you a wonderful purple cake. Hopefully next year you can be here to celebrate.

We'll never give up on you!

Comic Relief

People are forever asking us how we do it, how we hold it all together, how we stay so laid back and optimistic in light of our......challenges. Here's how and why:

Yup - found him up on the kitchen table one particularly stormy day "practicing" for a tornado.



Working out is hard to do, but she always does it with a smile/grimace on her face


















Ready for take off, Daddy

















True love

















So, so tired.......


















Such a great "daddy". (Yes, he's back in the patch :( )

Our Shortest Hospital Stay Ever

At 9:00 this morning we checked in to the hospital for what was supposed to be a 48-72 hour video EEG in hopes of finally naming the the type of seizures M has been having. Her seizures have become more frequent and more severe in the past several weeks despite new medications and increased doses. She got "wired" by 10:30 and at 12:15 they came in to disconnect her as they had "plenty of information." When there are enough events to provide "plenty of information" in less than 2 hours, it certainly can't be good news. We were discharged and sent back to the clinic where the dreaded Sabril starter packet was waiting on the table in the exam room.

What our hope was, was that M has been having myoclonic jerks. What she is indeed having are literally hundreds of Infantile Spasms per day. Basically, there are two options - don't treat and wait for them to resolve knowing that with each one, she is suffering additional damage to her already severely compromised brain function; or treat them with Sabril which carries great risks of its own. We opted to treat them. Approximately 1 out of 8 of the children our Neurologist has treated has not responded. Hopefully M is one of the lucky 7.

There is A LOT involved with starting this medication, a lot of waivers to sign, monitoring to be done. IF it works, we can expect to see results in as little as a week. Dr. D says that when it works really well, these kiddos just suddenly "wake up" and "come alive." We're praying for that outcome.

The very unfortunate side of this is what lies ahead. Because of the extent of M's brain injury combined with complications of prematurity and underlying seizures, she is at extremely high risk of developing Lennox-Gastaut Syndrome down the road. We can't think about that just yet, but it's hard to ignore once the knowledge is there.

Just words

Today we had some very important (and long awaited) appointments. Here are phrases a parent hopes to never hear from her child's doctors:

spastic cerebral palsy
....we'll have to wait and see
grossly deformed brain
....we'll have to wait and see
significant brain damage
....we'll have to wait and see
extensive encephalomalacia
....we'll have to wait and see
significant visual impairment
....we'll have to wait and see
will never walk
....we'll have to wait and see
may never talk
....we'll have to wait and see
severe global delays
...we'll have to wait and see
low cognitive ability
and yup...you guessed it....we'll have to wait and see

...and that's not even all of them.

At some point, one just shuts down and realizes they are only words. Our neurologist asked me if I was "one of those parents" who wanted her to paint a fluffy, optimistic picture. I told her I was the polar opposite of fluffy - I wanted it straight and scientific. That's what she gave me, and I appreciate that. What I know is that the only solid truths we have right now are that:

1. her hydrocephalus is currently stable
2. there is permanent damage - we already knew that
3. we'll have to wait and see - we already knew that, too

To quote one of my favorite geniuses:

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!" — Dr. Seuss

So, we move on to the next phase of this journey - fighting like hell. There is nothing we will not do for our kids. We will go to whatever lengths necessary to ensure M has every resource available to her.

BRING IT!!

The Numbers are in.....

....and they are frightening! My total cholesterol is 235, triglycerides 129, HDL 38, and LDL 171. I'm a walking time bomb just waiting for a heart attack or stroke! What's going to make me happier than anything is watching these numbers go down.