Welcome Home!

Today, my sister and nephews, got their hubby and daddy back! It's been a long time since he's been gone.

Welcome HOME Kevin Martin!!!

 

You are SO LOVED and you've been missed ... more than you will ever know!

I hope the days to come are filled with hugs & kisses, lots of love, laughter and fun family time!!!

Impending Surgery

Yesterday Justin took off work, and together, we headed to Kansas City to have our visit with Jocelyn's orthopedist, Dr. Gupta, to select Botox sites, for a general checkup and projection of new things to come.

This will only be Jocelyn's second Botox injections this year as that last injections caused MAJOR overall weakness which lasted for several months.

NOOOOO BUENO!

Since it is Fall/Winter, the upper chest areas and the like, are avoided until Spring/Summer. This time around we will again be heavy-loading her hips and legs as these seem to be a major problem.

We were surprised how much interest Dr. Gupta took in Jocelyn's hips this time considering I continuously express my concern and even decided to get a second opinion regarding this matter.

I can tell that Jocelyn's hips are progressively worsening as our typical therapies seem more difficult and painful to perform. Her hips truly do effect everything. The way she stands, crawls, sits, moves her arms ... everything.

Dr. Gupta wanted to get new x-rays which we of course did. As I already knew, her hips look fairly well when she is ring-sitting and they nicely set into the hip socket. When her legs are out straight, they are more than 50% dislocated and rotated outwards.

It was discussed that by Summer 2014 or 2015, we would have to do one of two surgeries.

The two surgeries that were discussed were a femoral valgus derotation osteotomy and a hip replacement. Hopefully I'm using the correct terminology. I thoroughly understand, but sometimes not the nitty-gritty stuff. Which to be honest, I don't need too. :P

These surgeries would not be performed at the same time, but more than likely, one of them will need to be performed within the next year or two.

The surgery that was discussed to be completed first, was the distal valgus derotation which would be right below the head of the femur.

This is surgery would require a cut just below the the head of the femur and the bone would literally be twisted and reattached with plates. The purpose of this surgery would be to correct Jocelyn's leg alignment. This is thought to help her with function, whereas right now, doing a hip surgery would more make her x-ray images "look" better than actually help her functionally.

Currently, even with heavy Botox, her knees/legs continually face laterally (they point outwardly) which is often coined at "cowboying" because the legs resembles that of a cowboy riding a horse. Its nearly impossible to walk, and definitely not far, with your leg(s) in this position. Even trying to get Jocelyn to sit-to-stand would more than likely be greatly improved with her legs/knees actually facing forward. I'm constantly attempting to align her legs with no avail.

However, the crappy thing about this surgery, is that it probably will help with function, but ultimately it will not correct the hips themselves.

What does this mean? It means that later, the hip joints themselves, will still need to be corrected, but perhaps later in life when Jocelyn is older.

If hip surgery can be prolonged to 8-10 years-old, the chances of having to perform the surgery again drops to nearly zero. That is of course what we would want. Again, there is no guarantee since the brain keeps telling the muscles the wrong thing to do, firing and pulling on bone when that's not what is desired, etc.

Its always important to remember that fixing structural things does not stop the brain from making the body do what we don't want. Sucks ... but true! However, by attempting to improve function, we can sometimes outsmart the brain.

Performing the derotational surgery was discussed because we could easily do a hip replacement and make Jocelyn's x-rays "look better," but what we want to improved is FUNCTION first. I could care less about how something "looks."

We will continue to monitor Jocelyn and make our best educated decision, but she can be weight-bearing with this surgery, as tolerated, almost immediately. With correct alignment, she very well may be able to acquire/finish certain skill sets like crawling because her knees will be under her and not out to the side, sit-to-stand unassisted because she can get up over herself and so on.

I don't really care if her hips look better per say, the whole goal of doing anything we do, is to improve function, comfort ... did I say function? :)

Dr. Gupta took the time to discuss research about both things ... supporting and non-supporting ... he openly expressed that many people would disagree with his approach, and that Children's and Shiners alike, would immediately recommend a traditional proximal hip replacement (just for those who don't know, this is where the neck of the femur is cut off and replaced with hardware that is more anatomically correct). Since Jocelyn wasn't wear-bearing when younger, despite all that we tried, the stem never bent to the typical degree needed which is one of the reasons her hips slides in/out of the pelvic socket.

Sadly, this is the other surgery that is more than likely going to occur in the next few years.

I found it interesting how many people have this type of hip surgery performed with no real improvement. Typically pain was decreased, but no increase in function. And lets be real, decreasing pain GREATLY improves quality of life, but many want MORE than that. I surely do for Jocelyn. In many cases, after this surgery, some have went from walking to not.

If there is no improvement motor-wise, often times the rationalization the doctor/provider gives is "Well, their condition was apparently too severe." Although true, sometimes waiting or trying something different FIRST, can greatly improve situations.

I find this to be true even with people that we see. Many say "With Jocelyn's diagnosis, often times certain things can not be achieved." That may be true, but as Dr. Gupta put it, if he were to give Jocelyn's diagnosis (Grade IV brain bleed/spastic quad CP) to his peers, show them a picture of her when she was around 6 months-old and asked them their predictions of where they would think she's at now or would be in the future, none of them would have speculated that she would have attained the abilities that she has thus far.

Again, its sad that this is a reality, but true. I can feel people's "assumptions" about Jocelyn all the time.

She is improving ... slowly but surely.

Its hard to know which surgery to do. None, all of them, when to do them, what can/could happen, etc. Either way, if nothing else, Jocie's hips will eventually be needed.

Its exhausting.
And Jocie's been through enough.
I don't want to have to do ANYTHING else.

More surgeries, more scars, more therapy, more sweat and tears. Its draining, its hard on the heart, but I'm always fight for Jocelyn to have the chance to succeed. That's all I want. The opportunity.

Both surgeries have their pros and cons. Potential gains or set-backs. Over the next year or two, we will have to hone in on which of the two surgeries to do first ... maybe only one. Nevertheless, I appreciate the knowledge and options given.

I did watch a few videos ... can't seem to help myself.
I've watched shunt placements, eye surgeries, g-tube sugeries, etc ... suppose I simply have to KNOW what it entails.

I've already seen a real hip replacement while in practice, but never a rotational surgery.
If you're squeamish, don't watch, but pretty interesting.

Jocie's leg(s) would be rotated INWARD

I probably should not watch this stuff. Makes my heart hurt for her :(

Weekends & School

The last two weeks (and definitely the weekends) have disappeared in a blink of an eye!

Two weekends ago, we spent Friday night and the majority of Saturday with Justin's parents at Smoke On The Water out at Lake Shawnee.

Friday night, Grandma got in some Jocie-loving time ...

... and Justin's dad cooked up some HUGE tasty steaks and potatoes to chow down on that evening. We even got to see two of Justin's aunts.

That Saturday, we also got plenty of sunshine, outdoorsy time. The day really did give us incredible weather and it was nice to get one-on-one with my loves.

 

It was obvious that Jocelyn approved of basking in the sun.

Then, this past weekend, we got to see Justin's other set of parents.

-- I need to see my parents soon. It's been far too long! --

We always seem to talk so much, about anything and everything, that the hours whiz on by. We spent the morning talking and playing with Jocelyn, they treated us to some super delicious Mexican food (Justin's margarita was the biggest I've ever seen haha) and then we went over to Justin's brother's house to celebrate our nieces birthday.

She sure is the prettiest young woman around. I think she's so beautiful both inside and out.

We all got to hang out and chat, watch Emily try to blow out trick candles, open birthday presents and eat some much needed cupcakes and ice cream.

Emily really had to get after it, but she got them all.

Ethan is proof that we all loved the treats. :)

And in other news, this past Monday, I was so totally thrilled that I got some much needed stuff laminated and organized to keep Jocie's preschool going.

I'm not kidding, it was a total steal. I think I laminated 14 yards of material for only $7!

We finally broke down and bought our own laminator, but to get big projects done in less time, it was worth the trip into town and the small fee to knock it out.

Some of our laminated projects included matching games, A-Z flash cards, A-Z memory verse cards, number cards (all of which worked out perfect to punch a hole through and attach to a binder ring), cards for shapes and colors, letter tokens and so on.

I also found a way to print and laminate the pieces that go along with Handwriting Without Tears. Once I cut them out, I plan to add pegs to the fronts and magnets or Velcro to the backs so that Jocelyn can form letters independently. Or at least I hope. Since she can't hold things between two fingers, this should help. She's gotten very good at grabbing large knob-type things, so here's to being hopeful! :)

I also finished Jocie's daily workbook. At this point she does NOT like to even listen, but together, hand-over-hand, we complete the workbook and talk about the subjects for the day.

There were so many more things that I was able to complete, one of which being things to keep myself organized and to track what we do each day. Its surprising how time consuming everything can be, but its all for a good reason.

I'm hoping through repetition and creativity, that Jocelyn is able to learn and then demonstrate to me that she's "getting it."

Tomorrow's hump day.
That means we got another wonderful weekend coming up! :)

Suprisingly Difficult

It has been a smidget past two weeks since we took away Jocie's pacifier.

Yep, bye-bye sweet paci.

 

We realize that many people often think "Uhm, it's about time ... she's 3 1/2 years-old!" In fact, I've had people tell me this while out in public which gets them a "mind your own damn business" in return.

Sorry, I don't mean to be rude but YOUR being rude!

So yes, we know Jocie is rather old for having a paci, but things simply are not the same with Jocelyn. We gave her a paci when traveling (this stopped her from chewing her clothes or arm) and sleeping, but it was also incredibly effective when doing difficult school-related tasks.

Amazingly enough, the paci helped Jocie to be centered, organized, focused and able to perform. The use of the paci could be compared to people who chew gum, bite on a pencil or twirl their hair.

Two weeks ago we went to the dentist and they of course brought up the use of the paci. Mind you, that's not what I had in mind to discuss. I really didn't want to hear what they had to say, but of course they needed to express their concern and knowledge behind weaning her pacifier usage.

Like a good girl, I listened to their "paci-speech" and then turned the attention on the real reasons we were there.

I took Jocie to the dentist mainly because of her discolored teeth. It sounds terrible and maybe gross ... how ever you want to say it ... but since Jocie barely eats anything by mouth and because of the meds she was on related to her prematurity, her teeth are discolored ... green in fact :( ... and feel rather thin or brittle despite her healthy diet.

So many unexpected things have come about for Jocelyn because of her prematurity, and having dental issues, is not an area of concern that we anticipated. And if being truthful, out of everything we've had, and continue to have, teeth issues are not at the top of the priority list. However, with saying that, I thought I was the only one that noticed her discoloration. I mean after all, daddy didn't even notice. Well I was wrong. Jocelyn's physical therapist noticed a few weeks back and commented on how green they were. I of course told him not to say that too loud because I don't know if it would hurt Jocelyn's feelings or not, but just in case, I want to be sensitive to the matter.

I told the dentist that we brush them day and night with no results. Jocie is unable to spit out her toothpaste, so typically the toothpaste does not have fluoride in it. After we brush her teeth, we apply MI paste. This paste is a flavored topical product (Jocie likes the melon and tutti-frutti) that contains vital minerals which are directly deposited onto the surface of the teeth. The paste helps to buffer acids produced by bacteria & plaque, and what we mainly started using it for so many months ago, was that it not only desensitizes her teeth, but it also whitens them.

Its frustrating that even with brushing routinely and the usage of MI paste, Jocie's teeth are still green and sickly looking.

People unfortunately get judged by their teeth ... by their appearance in general. Right, wrong or indifferent ... it happens no matter what.

Jocelyn doesn't need anything extra to make life harder than it already is.

Three questions that I had for the dentist:

1. What can we do about the discoloration of Jocelyn's teeth?
2. How do I ensure that Jocelyn's teeth aren't gnarly looking like so many adults that have special needs?
3. When, and how, do we go about getting her teeth cleaned and thoroughly checked?

The dentists answer to question #1.
     He recommended that we continue to use the MI paste and brush twice a day with the goal of brushing a full two minutes. Brushing teeth is a HUGE sensory issue for Jocelyn. She hates it, but we still do it. A long time ago, I started counting out loud for each area of teeth we brushed. This simple task actually helps Jocelyn because she knows there's an end, but we are often lucky to get a full two minutes of thorough brushing.

It was also recommended that we use the teeniest-tiniest amounts of toothpaste that has fluoride and a mouthwash in one. The brand they recommended was Colgate Children's 2-n-1 Toothpaste & Mouthwash. No joke, it only takes a smear to foam like crazy.

The other thing that both him and his staff recommended was a children's Phillips Sonicare toothbrush.

This is what it looks like.

Now, lemme tell ya, this little toothbrush is NOT cheap. When they showed the toothbrush to me and bragged on all the cool stuff it does (ie its rechargeable, the toothbrush head is specifically designed for small sensitive mouths, it has different brushing modes, a timer to indicate when to switch the area being brushed and when its been a full two minutes, etc), I said "You're going to have to do more than that to convince me that a $60 toothbrush is going to help Jocelyn ... and how do these differ from the ones I can buy in the local store for a lot less money."

I don't care when things help other kids (I don't mean for that to sound bad), but I'm interested if something is going to SPECIFICALLY be BENEFICIAL for JOCELYN!

The dental assistant then told me that this would help Jocelyn's teeth be cleaned much more efficiently since (A) its hard to brush her teeth for longer than a minute or so, and (B) because its equipped with a microprocessor that allows the bristles to move three faster than other electrical toothbrushes.

I played with the demo, asked more questions, got more answers and apparently all the moons aligned just right because wouldn't you know it ... I bought the damn thing!

Shockingly, two weeks later, Jocie's teeth truly are CLEANER and WHITER! Seriously, a product that works. Amazing! haha And another perk? It comes with one small and one large bristle head so now I use it too. I like that!

The dentists answer to question #2.
     He recommended to help decrease Jocelyn's chances of having deformed teeth waaaaaas ...

 

DING DING DING!

Lose the paci! I was instantly annoyed and thinking back, I hope my scowling eyes didn't shine through, but I'm positive they did. I'm terrible at hiding my emotions.

But, I knew he was right.

Perhaps taking away the paci will not prevent anything at all, but I know in my mind that allowing Jocelyn to continue to use the paci surely isn't going to help anything either.

I tried convincing myself it really wouldn't matter if she continued to use the paci. That she doesn't even really suck on the thing rather than chews on the back plastic part. I then told myself that she hardly even uses it anyways. The second I had that thought though, a different part of my brain goes "Well, if she hardly uses it anyways, then it won't be hard to take it away now will it?"

But perhaps the pictures above is prove enough that she in fact used it plenty! :( Give me a break, its the one of few things she enjoys. Maybe that made it all the more difficult to take away. Either that, or maybe somewhere down deep taking the paci away makes her seem more grown-up? I don't know.

After going back and forth in my head on the way home, I decided no, she will no longer have the paci and "since she doesn't really use it, and not that often, this will be a breeze."

Boy was I wrong!

Jocie didn't scream and cry for the paci, but oh my goodness ... the look in her eyes was so insanely difficult for me as if asking "Why mommy? Why can't I have my lovie paci?." Never have I seen those brown eyes of hers widen, plead and beg for something. Or when I was holding her to give night time kisses and she kept reaching in the air only to grab nothing. Or how she would stared up at me and made her fishy, sucky face as if she knew that'd win me over ... and it did ... ALMOST!

All I could do was give her kisses and explain. Daddy almost caved and I swore he'd get a beating if he did. And now, two weeks later, it's easier. She has times where she wants it as a soother, or that it would REALLY help to calm and organize her, but no. We will find other coping mechanisms.

To help with this transition, Grandma Garlow has already made her a cloth elastic necklace with a dangling terry cloth chewy that I think will help. I can't wait to try this "chewelry" out.

The dentists answer to question #3.
     When the dentist answered my third question ...

"When, and how, do we go about getting her teeth cleaned and thoroughly checked?"

 

... I wasn't a very happy camper.

Come to find out, if you have a child that's not willingly to participate in a dental cleaning, they simply don't get a cleaning. I said "What? How can that be?"

In my mind I'm thinking about how I make Jocelyn do all kinds of things that she doesn't want to do. I have too. If I didn't, she would never do anything and she wouldn't be where she is today. I hate that I have to hear her scream and cry, and I wish like Hell that I could just be MOM and not all the other roles I have to play, but that's not reality. I want to see Jocelyn succeed.

So with a dental cleaning, I'm thinking, how is this any different than anything else I have to do? I've held Jocelyn down when they've tapped her brain or have done other procedures, and doing a dental cleaning is far less of a big deal.

But no, they won't do it.

I asked why they can't put a mouth piece thing in (I don't know the technical term) to keep her lips open and then buzz the teeth with the polishing stuff and take a good look. Nope, they don't do that.

Feeling myself grow increasingly irritated I finally said, "Sooooo we just wait until her teeth seem like they are falling out?"

I know I was dripping with sarcasm but seriously, I'm not okay with that. They then told me how when dental work needs to be done, they take them to the local hospital, sedate them, clean their teeth and then perform all the necessary work. Ok, I can understand that but HELLO! If you don't look at them between now and God knows when, how do you know when work is needed? If Jocelyn could tell or show me that her teeth hurt, that would be a different story, but she can't. Therefore, I need a TRAINED PROFESSIONAL to tell me??!!

Man I was so frustrated ... still am ... and I'm not sure what the answer is but I'll figure it out like always. I was definitely surprised by the answers and approach thats taken with children like Jocelyn and I'm surely not impressed.

I'm not one to quit though, so this little hurdle will be jumped soon enough like all the others. In the meantime, I'm pleased to see great improvement with the new toothbrush and that we are winning the battle against the paci addiction. :)

Fall Weekend Fun

I'm not sure what it is, but I have definitely been enjoying our weekends together as a family.

We have indulged in lazy, snugly time.

And we've enjoyed riding horses, running a family 5K (which we totally rocked haha), going to a special little boys' KU birthday party and even spending time with our friends at a local Oktoberfest celebration to enjoy some German festivities.

We loved playing with all the kids while still getting in some "adult time." Jocie & Alannah thoroughly enjoyed singing songs with all the actions. They were terribly cute taking turns!

Even with all that fun stuff mentioned above, I think some of the most memorable times for me, are when we simply stay home and enjoy one another. And the best part? You don't have to worry about what you wear or how you look. PJ's and no makeup are expected! Haha

And when you live in the country, who cares if you make a small fire in your driveway!

 

Hot dogs, beer & smores -- Guaranteed to make ya smile!

 

 

And NOTHING beats cuddles by a warm fire!
Look at my hubby - what a handsome devil!

I'm loving that we actually have plans lately. I feel like its important to do things together, live in the moment ... together ... rather than let the weekends whiz by full of nothing but the "to-do's."

This weekend we are getting to spend time with Grandma & Grandpa Powers as they throw down some awesome BBQ at a competition at Lake Shawnee. Then, next weekend, we FINALLY get to spend a birthday with our infamous niece, Emily, in hopes of lavishing her with attention.

Memories of happy things, happy times ... that is what fills my heart with love, joy and keeps me going when things sometimes seem so hard.

I love that God gave us the ability to remember. And yes, with being able to remember, also comes remembering the crappy times. But I tell ya what, those dark, gloomy times? They make me savor the special ones that much more!

Out with the Old, In with the New & Feeling Special!

Today Jocie and I had our normal Friday morning therapies with Easter Seals Capper Foundation.

As we walked back to the therapy room to see our speech therapist, Jenny, immediately I noticed something different.

Instead of seeing the normal washed-out, faded and painfully old pictures along the walls, in their stead, were hanging huge, vibrant, up-to-date pictures of the therapists and children.

Jenny immediately showed us not one, but TWO, very special pictures!!!

This picture was from SO LONG AGO but yet I remember it so clearly!

 

My goodness Jocie's smile is ADORABLE!!!

And if it wasn't for her being so stinkin' cute, I'd complain that they caught me when I was much heavier and in a swimsuit no less! Ha!

I couldn't stop staring and smiling at this picture, but Jenny said there was more to see.

This is the second picture of Jocelyn that is hanging on display!
On her own wall no less!!!

Seriously, crazy cute am I right?? :)

And these pictures are HUGE -- I mean, they are really really big!

I had absolutely NO IDEA they were hanging pictures of us ... none whatsoever! They made us feel exceptionally special today and Jocie looks like a rockstar!!

Here are some fun ones of the therapists doing what they do best!


Julie - Our Past Speech Therapist

Jenny - Our Current Speech Therapist

Kim - Our Past Physical Therapist

Our current physical therapist, Cris, and our past occupational therapist, Wilma, did not have current pictures that I saw.

However, do not fret, they are in this awesome picture below! :)

Cris is the only guy you see and Wilma is the one in the turquoise shirt on the bottom of the slide.

It was a fun surprise to see such refreshing, smiling pictures today all throughout the Cappers building.

I'm still smiling!