Clarity

I was angry. Black cloud following me everywhere I went kind of angry.

I had stopped posting updates on Peanut because I was getting too frustrated with people saying “I knew she could do it” or “of course she did!” when I announced an accomplishment. I would think, “No. No, you don’t know. You have no idea. You haven’t been here for the last month while we struggled over and over again through the tears and failures that led up to this one moment. How can you just sum this moment up so casually?!” And when someone would say , “It can’t be that bad.” or, “Can’t she just do this?” I would want to fall apart and cry. I would think, “How can they think this is so simple?”

I would hurt for Peanut because the first thing many people would talk about or ask about was her disability. And many would point out what she wasn’t doing or can’t do and told me what I should do to “improve her life”. I would feel the weight of the world on my shoulders trying to satisfy everyone. Trying to explain why we’re doing this and not that would exhaust me, but I didn’t want to let anyone think I was doing anything less than everything possible for Peanut.

People would ask for updates as if they deserved it. Even when nothing “big” was going on. As if she was some ongoing experiment. And when I was vague, some would push as if I was being rude not to keep them informed. And it hurt so badly every single time.

There were so many suggestions. ALWAYS suggestions. ALWAYS ideas. So many. So many that I began to think that people thought we weren’t doing enough. Because why else would they keep telling me about more and more and MORE? It began to hurt too much, so I stopped posting things. I stopped sharing. I pushed everyone away because I couldn’t handle it without burning down bridges.

And most of all – It would disappoint me to the extreme when people never thought to ask what Peanut wanted in all of this.

So that’s when I removed myself. I took the deepest, most calming (metaphorical) breath of my life. I let all of the worry, anxiety, frustration, anger, offense and sadness out. And an amazing thing happened.

I didn’t care anymore.

I didn’t care what everyone else thought.

Not in a “bugger-off I’ll do what I want” kind of way. But in an “agree to disagree and move on” kind of way.

I have taken time to just breathe and realize that, no, people probably never really will understand. And that’s okay. They don’t need to understand. Understanding is irrelevant. What’s important is supporting Peanut and encouraging her. And I have learned to teach people the right way to encourage her. To set their expectations to her level, not theirs. To respect what she wants and needs. That maybe she can’t handle this overwhelming regiment of therapies, miracle cures and testing because she is a three-year old little girl with three-year old little girl needs. And many of them have nothing to do with her special needs.

I have realized that speaking up, no matter how much I don’t want a person to dislike me or my views, is imperative. And I have realized that speaking up doesn’t always mean a fight. Most people aren’t looking for a fight. They’re looking to understand because they want to help. And that’s something I can get behind. So I have been speaking up when necessary and shutting my mouth when necessary. I have been educating and correcting where I felt necessary. And I have learned that if someone is going to dislike me or my views on what’s important for Peanut, then that’s their problem to work through. Not mine.

And you know what? An amazing thing is happening. People are understanding, respecting, stepping back or stepping up.

Ironic, huh?

Most people never will truly understand what we go through on a daily basis. And I have realized that that’s not my problem. Nor is it anyone else’s. The only one who matters in all of this is Peanut. And if she’s satisfied with where we’re at, then that’s good enough for me.

Peanut’s Appointment With Orthopedics

Yesterday we had our appointment with Peanut’s orthopedic surgeon. I love Dr. T because he is not only recognized and respected in the field of pediatric orthopedic medicine (so I know he knows his shit – inside and out) but he’s been with Peanut since the beginning. He remembers her and always greets her with a hug, a big smile and lots of soft-spoken praise. While he doesn’t have the best bedside manners (he’s a mumbler and tends to drift off) he’s always had Peanut’s best interest at heart. That’s all I care about.

That said, even though he has her best interest at heart, he tends to follow the typical path to a child with spina bifida, a disability that is startlingly similar to Peanut’s diagnosis. He doesn’t really try to push the envelope. But I get it. When he only sees her once a year for follow-up appointments, who can blame him? A lot can happen in a year and he’s the big picture guy. He’s the one that catches anything leftover that her therapists, pediatrician and other specialist doctors miss.

He hasn’t seen Peanut for at least six months if my memory is correct. And in the last six months, Peanut has blown every typical expectation of a child her age with her limitations out of the water.

With a nuclear bomb.

She’s paralyzed from the waist down-
but she’s standing.

She’s paralyzed from the waist down-
but she’s walking with assistance.

She’s paralyzed from the waist down-
but she’s getting up the stairs.

She’s not even two years old-
but she’s saying and doing more fine motor projects than most kids her age.

She’s not even two years old-
but she’s demanding a wheelchair because she can control one.

As I updated Dr. T – who, might I remind you, has ‘seen it all’ – all he did was say a genuinely amazed “wow”. He was, for the most part, speechless. I was so proud of my little Peanut in that moment. I’m always proud of her, but I was extra proud with-a-cherry-on-top kind of proud in that moment.

And he responded with a shocking performance of his own. He deviated from his typical directions. He made a referral to a new clinic at Children’s Hospital of Wisconsin to help her keep pushing herself and he took a huge leap of faith on Peanut and told me NOT to get a stander like we had originally decided. Instead, he opted to have some long-leg braces made for her so she could continue to walk and stay mobile.

And that’s why I love Dr. T. Because he knows my little girl enough that, even when she shocks him by exceeding his expectations, he quickly adjusts to her needs and shows us the path to her next adventure. I’m so grateful to have such a fantastic team of doctors right in our own backyard that are so able and willing to give my little girl everything she needs and deserves.

Torn Between the Good and the Bad

I, like most parents, question everything when it comes to my kids.

Are they eating enough? Why aren’t they talking yet? Am I teaching them enough? Should they be doing this yet, or that yet? Is it normal if they’re doing this or that when most kids aren’t?

For most of us, we wait for their pediatrician to tell us what is or isn’t “normal”. Others of us use the internet as a resource to ask  a question in a forum or we look up articles or parenting websites for the “norm”. Others yet will ask their parenting friends what they have experienced with their kid or we silently compare the kids and see if they’re keeping up with their peers.

We can’t help it. We just want what’s best for our kids. We don’t want to miss anything and let a preventable problem turn into something life-altering or life-threatening.

And this is why I’m so grateful for the Neonatal Developmental Follow-up Clinic at Children’s Hospital of Wisconsin. Because my girls are NICU grads, they both got a referral to the Neonatal follow-up clinic. (Neonatology is a subspecialty of pediatrics that consists of the medical care of newborn infants, especially the ill or premature newborn infant. – wikipedia) We have gone once every six months and put the girls through different tests to screen for developmental handicaps in early childhood.

This is a way to catch preventable problems before they get bad.

And let me tell you, they’re thorough. They go through tests with each NICU grad with a fine toothed comb. The great thing is that they do it through fun and games, so the kids don’t even know they’re being screened. Speech therapists talk about the pictures in a book and let the kids passively repeat the words they’re saying. Physical therapists make games of running, jumping and throwing and watch how they handle it. Occupational therapists play with puzzles, blocks and other fine-motor toys to see if there’s any delays.

After all of the “testing”, or what I would probably just call a free-for-all, the neonatologist comes in and talks to me about how they were scored. They score the kids on the level of difficulty that they’re able to perform for the tests. (ex: Peanut’s gross motor skills are at 8 months because she can’t crawl, stand or walk. Her score is the equivalent of how far she has developed in that area.)

Here’s the results of their actual age (21 months) vs. their developmental results:

Bear
Cognitive (play) skills: 25 months
Fine Motor (hand) Skills: 26 months
Gross Motor (large motor) Skills: 18 months (refused to finish her test. Little snot.)
Receptive Language (understanding): 26 months
Expressive Language (talking): 23 months

Peanut
Cognitive (play) skills: 23 months
Fine Motor (hand) Skills: 28 months
Gross Motor (large motor) Skills: 8 months (due to paralysis)
Receptive Language (understanding): 24 months
Expressive Language (talking): 19 months (too soft spoken)

Normally the neonatologist would talk to me about what needed improvement and make suggestions and/or referrals to other clinics and specialists in Children’s. (another reason why I love this post-NICU program is because they’re so great at giving you every resource you need for your special needs child.) But the problem, which I wouldn’t call a problem at all, was that the girls had absolutely blown nearly every test out of the water. And honestly what they didn’t do well on, is still well within the normal range of development.

So basically – What started out as a premature birth and concern for both girl’s health and future, turned into thriving, intelligent and very capable little ladies. We really didn’t know how things would turn out, and they surprised everyone by simply exceeding.

And, I’ll admit, I was floored. I had no idea they could do all of the things that they had the girls doing. They were figuring out puzzles far more advanced than I usually give them. They were attempting every word that the speech therapist threw at them. (speech is something that really throws me because Buddy didn’t really have an interest in talking until after he was 2 1/2. The girls are leaps and bounds ahead of where he was at this age.) They were fine-motor machines with stacking, stringing and twisting toys. I just wish I could express to you all how amazing it was to see this. I just… couldn’t believe it. I still don’t really believe it to be honest with you.

The therapists couldn’t believe how well the girls did, either. They ended up making their screening into a “let’s see how far we can take this” game. They started giving the girls tests that they normally don’t give kids their age. And the girls passed most of them. It’s just… wow.

I tried really hard not to let it get to me. Really hard. But… well let’s just say my pride may have swelled up like a blowfish over my beautiful, wonderful and so SO very smart and capable little ladies!

And… my ego kind of exploded as well as the therapists laid the praise on thick. And I just sat there preening myself under the praise. I know, I know. I shouldn’t have let it get to my head like that. And I tried not to and I laughed it off at first. I told them I really don’t do anything different from most parents. I tried to tell the that I rarely get out of my pajamas and leave PBS on all day long and they should probably be praising Big Bird and Sid the Science Kid instead of me. But they insisted that it’s me, and went on to tell me to just keep on doing what I’m doing.

“Well,” I sighed with a giggle, “alriiiiiight.” *giggle giggle giggle*

When the neonatologist came in, she continued with the praise and proceeded to tell me that she thought the girls were doing so well that she doesn’t need to see them again. They were being discharged and pronounced “well and healthy” to the world.

I was so excited and proud and full of hot air!

After being dismissed, I barely squeezed my inflated head through the door to the waiting room, checked out and dressed all of us back up into our winter coats, hats and gloves. Because dang was it cold outside! But I didn’t even care. I not only had made it through an entire Children’s visit with no bad incidents from all three of the kids (Buddy came along and watched), but my twins tested like rockstars and got discharged. I was ego-mommy extraordinaire!

And I almost made it to the van that way. I was so close. The van was literally in sight and I was this close to getting home without incident.

But then reality smacked me in the face.

Or rather… Buddy’s face.

HARD.

He tripped and fell over in the middle of the road in the parking garage. He started to whimper and get up, but I was in a hurry to get across the way and out of the driving area. So I grabbed him by the back of his coat and hiked him up one-handed to get him back on his feet.

But that wasn’t what happened.

Between his slippery coat and my cotton gloves, he slipped out of my grip and crashed back down onto the paved road. On his FACE. It sounded like a bowling ball dropped. I’m really not kidding. His head sounded like a bowling ball crashing into the ground with a deep *thud*.

OH MY GOD. Do you want to know what a deflating head sounds like? It sounds like a child’s head crashing into the pavement face first. It sounds like a gasping mother and a series of curse words that I simply can not repeat. It sounds like a string of warbling apologies. It sounds like the indecipherable wailing of a two-year-old that, even though you know they aren’t saying it, sounds like, “I HATE YOU I HATE YOU I HATE YOU!”

I have never felt so terrified and so terrible as I did in that moment. I was absolutely positive that the *thud* was his nose. I was absolutely certain that I’d pick up my son and blood would be gushing from his broken little nose. His little nose that had finally healed after his epic fight with a coffee table.

Oh, good god. I am a terrible mother.

So, after I finally wrenched his hands from his face, I was immensely relieved to find that I had only smashed his forehead into the pavement. Little bits of I-don’t-even-want-to-know-what were stuck in his forehead from the pavement and his face was smeared and streaked with dirt and tears. He, once again, had a giant swelling face within a month of the last incident.

I am a terrible mother.

I loaded the kids up and did my best to clean up Buddy’s face. He stopped crying pretty quickly, but it didn’t matter. the sound of his head thudding into the ground was cemented into my memory. I was now guilt-ridden mom extraordinaire. We drove home in silence and I spoiled all of the kids for their respective excellence or injury. My ego was firmly sunken to normal levels and the world was righted again.

I’m still not sure whether to call it a good day, a bad day or just a normal day. I feel a little guilty being so excited for the girls after what I did to Buddy, but then I feel a little guilty if I don’t acknowledge the girls and dwell on Buddy. I hope this is the last time I feel torn like this. *snickers* Yeah, right…

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Peanut – The Warrior Princess

This picture is for those of you in the blogshpere that don’t follow me on Facebook or Twitter and miss out on all of my extra pictures and adventures.

Peanut is typically a very shy and reserved little girl around strangers, but this is the happy and adorable little girl that I get to see every day. After taking this picture I knew I had to share it with you all so you can cheer for her along with her family and friends back home!

A rare, genuine smile from Peanut to all of her fans!

A rare, genuine smile from Peanut to all of her fans!

A different kind of Independence Day!

Look! LOOK!!!!!!!! Peanut’s in a wheelchair!

That’s right. Today was the big day! We had our first consultation with her vendor and she got to try out some wheelchairs! I felt like we were car shopping. It’s absolutely unbelievable the amount of wheelchairs you can pick from. THOUSANDS. There are chairs for indoor use, outdoor use, easy transfers, lifts and SO much more. I’m relatively new to this and I’m already overwhelmed with the “simple” choices. I can’t even fathom the more complex features that are at her disposal! I just can’t believe the opportunities that Peanut has in front of her with the way modern medicine and technology is today. It floors me.

Okay, so first of all, I LOVE the vendor and I’m SO HAPPY I fought tooth and nail for him. He is everything that everyone said he was and Peanut absolutely adores him to boot. He’s incredibly well versed in the field and so patient and receptive. When he showed up he didn’t bring a chair in because he wanted to sit down and just listen to my thoughts on her abilities and what our goals were for her. He just sat back and listened to me for half an hour while I told him about Peanut and what I wanted for her. He never interrupted me or corrected me. (which, when dealing with healthcare people, is a major rarity.) Once I finished, he asked me questions and had me go through a daily scenario with Peanut to get an idea of what she’d be needing her chair for. FINALLY after an hour of talking, he went out to his van and grabbed a chair.

He was definitely listening to every single word I said, because when he came in, he brought in something to fit everything I had described. I wanted her independence (check), I wanted her to be able to keep up with her siblings (check), I wanted something for easy transfer to bed, the couch etc (check), I wanted her to have reasonable outdoor use for her chair (MAJOR check), I wanted it to be streamline (check), I wanted it to be something she could use on her own (check), I wanted something that could be adjusted to keep up with her rapidly growing body (CHECK!), I wanted something that would be easy to travel with (MAAAAJOR check!).

We put Peanut in and she was all smiles and giggles. She LOVED it. I mean seriously loved it. She likes being at her sibling’s level. She also loves getting pushed around. She refuses to try the wheels because she’s apprehensive about them, but I’m thinking it should only take a few days at most.

So as far as the wheelchair itself. It’s called the TI-LITE TWIST.

  • This wheelchair is versatile both inside AND out! Once she’s strong enough she can easily play in the yard with her siblings, wheel through forest trails and get around on uneven ground with ease.
  • It comes apart easily (like literally at the push of a few buttons) so travel is simplified tenfold.
  • Everything from the seat to the footrest to the height and width is adjustable. We can also buy a number of different adaptive wheels for different heights and terrains that will all fit on this universal frame so it’s not like we’re stuck with one chair and one chair only.
  • Because the vendor can special order a number of parts, the chair grows with her and she can easily keep this chair for six years at LEAST which is a HUGE financial plus.
  • There’s one wheel in the back for anti-tipping and it’s adjustable depending on indoor/outdoor use. When outdoor it basically becomes a 5th wheel.
  • The front wheels have blinking lights. BLINKING LIGHTS. Talk about appealing to kids! Every time Peanut moves the lights start flashing. It’s similar to those tennis shoes that all kids want that flash when they run. They’re also adjustable and can tip the entire frame forward or backward so Peanut can find a good spot for lumbar control which is imperative to strength building.

There’s more I’m sure, but there’s just so much to remember! Bottom line… it’s perfect. I absolutely love it. LOVE. IT.

To top it off, the vendor offered to let me keep it here for a couple of days so we can test it out and see if there are any immediate issues we can think of that he can either fix or find a new chair. He is also going to contact a rep to find a stander that he thinks would fit her well so we can try that out as well. What an awesome guy!

OH… AAAAND, coolest thing of all, I was originally told that most vendors take 3-6 months from beginning to end to get everything figured out with finances and fitting and everything.

Not this guy. He’s a badass mofo. He is already pushing to try to get this entire wheelchair process started and FINISHED in the next month. I thought we’d be looking at christmas and now we’re looking at next month!

NEXT MONTH?!?!?!?!?!?!? I’m just dying. Every headache and heartache was worth getting this guy. He is wonderful. He is giving my daughter a freedom that I have been dreaming of since the day she was born.

Independence, here we come!!!

Making the grade!

The girls had a follow-up appointment in the neonatal clinic today.

They’ll be seeing them every six months until they’re 3 years old. This was their third appointment. What happens is we go in, the girls get an evaluation, then we find out where the girls stand physically and developmentally.

As a parent it’s a tad stressful because everything kind of comes back to you. If they do well, you want to claim all of the glory. But if they do bad, you want to point the blame at everything around you. (Oh, stop lying to yourself, everyone does it. I do it!) Numerous times I’ve found that my first reaction is to look at the kid’s environment for fault rather than at myself.

Well, lucky for me, I didn’t have to worry about the negative stuff!! They were evaluated at, or ahead of their age range in a number of areas! There are a few things that they were a month or two behind in, but it’s absolutely normal for kids to range two months ahead or behind their adjusted age. They’re right on target!

[Side note: Peanut’s gross motor skills were evaluated far behind because she isn’t able to crawl or walk. Her current evaluation age is probably as good as she will ever get because of this. BUT what she can do, she does phenomenally. The therapists who tested her said they were amazed at her core strength/control (abs). Her abs are, in their own way, replacing the “responsibilities” of her glutes. I guess not a lot of kids can do this, so I’m really proud of her for taking control and making the best of her situation!]

Here are their report cards:

PEANUT:
age from birth date: 15 m – 21 d
age from due date: 14 m -21 d

GROWTH PROGRESS
weight:       20 lbs      10%
length:        29″            10%
head size:  17 3/4″    45%

BAYLEY TEST SCORE: AGE EQUIVALENT
cognitive (play skills)    16 mo
fine motor                          20 mo
gross motor                       8 mo
receptive language         13 mo
(understanding)
expressive language      13 mo

BEAR:
age from birth date: 15 m – 21 d
age from due date: 14 m -21 d

GROWTH PROGRESS
weight:       21 1/2 lbs     35%
length:        29 1/2″          10%
head size:  17 3/4″          45%

BAYLEY TEST SCORE: AGE EQUIVALENT
cognitive (play skills)    16 mo
fine motor                          20 mo
gross motor                       14 mo
receptive language         13 mo
(understanding)
expressive language      14 mo

Yay!! Can you believe it?! 14 months is their adjusted age, but they evaluated at 20 months for fine motor skills! Their cognitive play is ahead as well! The rest, (besides Peanut’s gross motor skills) is right on target! They’re little superstars!!!

I’m a very proud mama. 🙂

MRI results

THE MRI CAME BACK NORMAL!!!!!!!!!!!!!!!

Peanut’s pediatrician called as soon as she got the results back. (I just have to say, I love our pediatrician. She is so doting and loving towards the kids and she still calls me outside of her working hours to check in on Peanut to make sure everything is going well. I don’t know how I got so lucky to have such a wonderful Pediatrician!)

The first thing she said was that Peanut’s MRI looked extremely reassuring. There was absolutely no sign of blood clots, fluid buildup (from an infection) or tumors of any size. In fact, all they saw was an excess of fatty tissue and atrophied muscles. Both of which we already knew about. Everything else looked very healthy under the circumstances. YAYAYAY!!

The most reassuring thing she said was that they looked closely at her lymph nodes and they looked perfect. Her lymph nodes were what I was most concerned about since my Dad passed away from Lymphoma. The chances of her getting cancer at such a young age is very minimal, but honestly, the chances of her being born paralyzed were also minimal. I was going off of the fact that anything is possible no matter what the odds, and Lymphoma was now in my immediate family. It was cause enough for concern.

I can’t even begin to express the amount of happiness and relief I’m feeling right now! We’ve avoided another worse-care scenario. I don’t know how we continue to be so lucky, but I’m definitely not going to complain!