It's a plane...It's a bird...

NOPE!

IT'S THE INCREDIBLE BOOGIE!!!

{Some little girl was feeling strong last night! When I hoisted her up on my feet, she was arching that back, lifting that head and legs like a champ! She was so wiggly and strong that I almost was afraid to play "airplane" because I didn't want to drop her! Nice surprise!! On a side note, this is an AWESOME inner-thigh workout ... whew!}

{She is the SWEETEST little thing ever!}

All three of us were having so much fun last night playing together, being silly and dancing around the livingroom to some old school tunes like Baby Got Back, Bust-A-Move, This is How We Do It and Can't Touch This! Oh and we definitely had to jam out to some Gangnam Style!!!

 

Jocie loves to dance with us and watch us if we get really crazy! Its quite the show that I'm sure would involve lots of laughter if you were observing. :)

 

Listen below so you can have a theme song for the day and pep you up!

 

Happy Hump Day -- Let's all "fly" through this day!

 

Good Stuff

Got good news in the mail yesterday!

The mammogram, lipid profile and my AG 1-25 {a blood test to check for ovarian cancer} each came back normal!!!

Amen!

Feeling grateful!!!

After my yearly, womanly check-up, my physician decided she wanted both of these tests done because of some "abnormal" physical findings; so I am beyond pleased that everything came back proving that I'm a healthy chica!

I find it eerie that for nearly 3 weeks I continually saw the numbers 1234 on my watch, clocks in the house, cell phone, while driving in the car, etc. I saw these numbers virtually every.single.day!

When I was little, my sister would always say "Quick! The clock says 12:34 ... make a wish!!" Never thought anything of it, but definitely always made a wish. She was my sister, older than me and very convincing that if I was "lucky enough" to see 12:34 on the clock, that my wish would come true.

I'm sure that it's my internal clock knows what time it is, or that my brain is simply registering that particular time when I see it because there is also an associated memory with those numbers. Either way, it is super strange to see it each day. However, when looking at numerology, I did find some say this could be a sign of a guardian angel or spirit that is trying to let their present known. I found this rationale interesting as I was awaiting my test results ... food for thought I guess?

I'm weird ... I already know this!

In other news, Jocelyn's unwavering love affair with diaper wipes continues. I had to snap a few shots because she is so infatuated with them!!! In all fairness, I am the one that gave her the container. I can't help it, I like to see her "make a mess" of something. :)

Also, I am finally finished with Jocelyn's therapy room {well, mostly anyways}.

(We put hooks in the ceiling so we can use/change out any of Boogie's 4 swings to use indoors, she now has a therapy mat to help cushion all that hard work, the bright round thing is her Tubmobile and we even have Boogies portrait from Laycee Originals hanging on the wall!)

(We have all her toys organized & coordinated with their pictures so she can make choices, communicate, etc ... and I even got her therapy mirror hung! Yes, I'm a goof-ball!)

(These pictures show more of her equipment like Kaye Benches, a hippotherapy seat with tray and another swing that is called a Joki Hammock Swing. The one picture with the clear bookshelf & bench with posture system is where we perform some of our preschool stuff . I have most of her therapy & art supplies organized hanging on the closet door, and inside the closet houses her lightbox, more therapy balls, her WaterWayBabies neck ring, E-Stim supplies and so much more. Makes it easier to find, and more importantly, USE this stuff!)

Despite a cruddy day yesterday, I'm feeling good about the positive mojo coming my way lately. Today is beyond beautiful and as soon as little miss sunshine wakes from her nap, we are going for a jog out at the lake!!! Pretty excited to enjoy more of this fabulous weather -- what a blessing!

To My Loves...

I want to:

- wake up and see your beautiful smile every morning,

- for you to always know you are why my heart beats,

- never stop cuddling,

- give you kisses whenever and wherever I want,

- hold your hand always,

- hear your laughter every.single.day,

- always enjoy the little things with you (because that is what truly matters),

- think about you all the time,

- tell you how much I love you and for you to both know & feel that love,

- never take you for granted,

- be your inspiration because you are mine,

- always uplift and applaud you,

- be a better wife & mother than I was yesterday,

- tell you that you're the best thing to ever happen to me,

- always miss you when we are not near,

- be the one you tell all your secrets too,

- always make you feel important, treasured and loved,

- always have fun and dance together every day,

- to tell and show you each day that it's YOU that makes me a better person.

And specifically to you sweet husband ...

I want to:

- always be your queen as you are my king,

- feel like the most beautiful woman in your eyes,

- know that I make you the happiest man ... husband ... in the world,

- feel like we can never get enough of one another,

- fall more deeply in love with each passing day,

- spend more time wrapped up in your arms,

- always be your silly, creative, loving wife for as long as we both live!

***Mostly, above all else, I simply want YOU! I'm thankful you are in my life and I love you more than I could ever begin to say! I don't always do a great job of showing you my love, but you truly are a spectacular man and deserve the best the world has to offer!

"Thoughts of a Mom"

This morning as I was scrolling through my Facebook feed, I came across this "letter" (or thoughts really) from a mother of a special needs child. As I read through this I said "my thoughts EXACTLY!" I didn't think this letter would make me cry, but inevitably, I started crying half way through.

It is true, we special needs mamas are a breed all of our own, but not by choice. We love our special angels and would never want to be without them, but we wish (at least I do anyways) that life was different, more typical, more "normal" ... easier.

Mothers of all walks of life, whether they have a special needs child or not, have their lives flipped upside the minute they find out their pregnant, give birth or adopt a baby. Everything changes for everyone! However, when you find out that you all of a sudden fall under the category of a "special needs parent" something happens ... it changes you and your life in a totally different way and its forever. There are a whole new set of challenges to face, new lingo to learn ... simply a different way of life all together.

Please do not understand -- we "special needs parents" are no better than parents to a typical developing child, we are simply unique in the things we face when it comes to our child (children), in how we provide care and simply ... how we live all together.

Below are the thoughts of Maureen Higgins who has written what many "special needs parents" think and feel.

Thoughts of a Mom
By Maureen K. Higgins

"Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores. I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’ s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars."

Visit to the Brain Docs

The majority of the last few days have kind of blurred together.

This past Wednesday, we spent most of the day bouncing between two different Children's Mercy hospitals to see the neurosurgeon, neurologist and to obtain the necessary radiology images.

After seeing our neurosurgeon, we found out that basically they were taking their "best guess" as to whether Jocelyn's shunt had malfunction. Supposedly, the CT scan that we got on November 9th when Jocie had her seizures was virtually unchanged in comparison to the one she had two years ago. Not only that, but when they tapped Jocie's shunt and found it to be 18psi (15psi is normal), that it really wasn't "that bad."

We knew prior to surgery that the CT scan were virtually unchanged and that the pressure inside her skull was 18psi, but we also thought everyone was 100% sure she was having a shunt malfunction; hence, why we did the surgery.

Turns out, even if a CT looks unchanged or "good," and when a shunt is tapped and doesn't reveal much, you can still have a shunt failure and not really know it. They said since she had been vomiting and began having seizures, that they decided to "try changing the shunt and see if that helped." I don't know about anyone else, but for some reason, them telling us that they were basically guessing made me really uncomfortable. They might have really thought and done this, but don't tell me!!!

Don't get me wrong, apparently Jocelyn needed a new shunt and we are unimaginably grateful that this type of procedure exists and that we can get fabulous care from CMH. I simply would hope there would be more evidence these days to give a definite "yes, this is the problem" or "no." But who knows, maybe there isn't?

I'm telling you right now, I know for a fact that I would have totally flipped-out if it wasn't the shunt and we went through all that ... if Jocelyn went through all that ... for nothing!!

When we hopped over to a different CMH to see the neurologist, we found out the following:

1. Seizures are "no big deal."
2. When having a seizure, its not necessary to call 911, unless its a shunt malfunction.
3. We should've used our "rescue medication."
4. Seizures do not cause any permanent damage even if the oxygen level falls to 50%.
5. That sleeping issues are a MAJOR problem with people with brain injuries and especially when that injury is from hypoxia! It is suspected that Jocelyn's pineal gland has been damaged and therefore she's unable to regulate her sleep cycles.

I think somewhere along the line with having this conversation with our neurologist, my husband picked my jaw up off the ground. First, when its your child, a seizure is beyond a "big deal!!!" Secondly, I'm pretty sure I don't have a CT or MRI machine in my backyard to determine, PRIOR to calling 911, that Jocelyn's shunt has malfunction. Jocelyn hasn't ever had seizures {outside the NICU when there was still blood on her brain}, but my very first thought was "Oh no! Her shunt has probably malfunctioned!"

Well, that was after my first initial "Oh shit!" thought!

It was pretty obvious that the specialists didn't think Jocelyn truly had a 10 minute seizure followed by 2 five minute seizures. I know for a fact the first one was 10 minutes {I know the exact time of all three of them} because I looked at the time I called 911 and then again when the seizure stopped. I can tell time! But regardless, we were informed to make sure we use a watch {and "not guess"} so that we could truly time any future seizure activity as 1 minute can seem like an eternity. That was the first statement he said that I agreed with!

Also, both our neurosurgeon and neurologist kept saying "Did you give her the rescue medication?" Repeatedly we told them "No, we've never had to use the stuff and none was ever given to us in the first place." We again told them that once all the blood inside of Jocie's brain ventricles cleared, she didn't have seizures. She will always be more susceptible to have a seizure unlike a typically developing child, but it wasn't ever brought up to keep that stuff on hand and not to mention that it has been over 2 1/2 years since she's ever even had one.

Needless to say, we now have a medication called Diastat. This medication is given rectally if Jocie has a seizure that lasts for greater than 5 minutes. Trust me, if Boogie even remotely demonstrated seizure activity, it will be extremely hard for me to not give the Diastat immediately, but I will try my best!

We have been frustrated because we have seen a difference in Jocelyn since her having the seizures and the shunt replacement, and its annoying when people make you feel like you're crazy and especially since seizures "don't do any permanent damage!" Either way, we know our daughter and she's seems different. Jocie goes from bursting into tears to laughing at a drop of a hat {a lot of 2 year-old do, but not Jocelyn ... or at least not since before this}. She seems to have lost some of her ability to balance herself {which we constantly work hard ... extremely hard ... to make any type of gain}, she neglects her left side more and her personality all around seems different. However, now that we are more than 2 weeks out, some of these things have started to somewhat improve.

Both professionals suggested that some of these changes could be from the fact that they put in a larger VP Shunt ... so the catheter inside the brain is larger ... and that means that part of the brain tissue in the frontal lobe is gone and there "might be" some residual swelling of the brain around the catheter.

Awesome!

{My sarcasm is beyond thick as would be yours, but there's nothing that can be done about it}

I'm not trying to sound like a jerk or ungrateful, because I am grateful for their education, intelligence and skillful hands; however, I am also a mother who loves our daughter beyond measure and find all of this so challenging and aggravating!!

I literally thought I was going to explode after all our appointments were said and done.

 

It doesn't help when the nurses had trouble doing basic things {like subtraction to get Jocie's correct weight ... it took the lady nearly 5 minutes ... no joke ... to subtract 100kg from 14.2kg and then convert that into pounds}, or when we have to tell them how to position Jocie for a CT or shunt series x-ray ... it was just all piling up throughout the day!

 

We typically get awesome care at CMH and I would still choose them a 100 times over, but I was so frustrated on Wednesday!

 

Through it all we learned ...

 

... Sometimes surgery is necessary even when there is uncertainty.
... We now have a med on hand for any (potential) future seizures which provides (some) peace of mind.

... We now know what to expect if Jocelyn has any additional seizures or another shunt failure.

... That we are NOT imagining Jocelyn's sleeplessness, and have received validation that she truly has a problem. Solution? We are starting to give her 2.5mg of melatonin each night and prayerfully hoping this changes our lives.

 

On a side note, I plan to print and mail literature to our primary physician that blew us off when requesting help about Jocelyn's sleeping issues. I'm not doing it to be an ass, but who knows, someone else might be in the same situation and only have the primary doctor as a resource so he needs to know what to do! And besides, knowledge is power!

 

After our busy day, we spent the next 3 days seeing lots of family and gorging ourselves on some wonderful Thanksgiving food! We had lots of celebration to do because after all ... we have so much to be thankful for!!

Sleepless in Tecumseh

So maybe Jocelyn doesn't sleep because her bed is AWFUL!!! Oh my goodness gracious! I highly doubt this is the reason, but hot dang, my back and neck still hurt even this afternoon!

Justin crawled into bed with Boogie yesterday morning (and when I say "morning" I'm talking about her getting up at 3am is her typical time) so I could try and get an extra hour or two of sleep. Last night when she woke me up by hollering and pounding her feet on the floor at 4am, I figured it was my turned, and I crawled into bed with her so Justin could sleep a bit more.

Note: us crawling into her twin-sized bed is not ... I repeat NOT ... a normal thing for us, but at this point, we are getting desperate and will do anything for some sleep! :s

So from 4-5:30am Jocelyn whined and pushed against me because she wanted to roll around and off the bed onto the floor because "down there" she can be the loudest. I can not believe how hard she could push on me! Really kid? Trust me, I don't want to sleep next to you either! She finally got worn down and fell back asleep around 5:30-6am (which is when we should be getting up!).

Justin and I have tried nearly everything over the last two years to get Jocelyn to sleep through the night. We've went from changing the time we put her to bed, changing her beds, shorter naps, changing her meals times, warm baths, story time and cuddles prior to being put in bed, we use a noise maker, keep her room cool, keep stimulation before bed to a minimum and those are only the tip of the iceberg!

Oh, and don't think we cater to Jocelyn whenever she makes any type of ruckus because we don't. We've done the whole "let her cry it out ignoring her thing" and that hasn't worked for years now!

We will attempt a new tactic for a few weeks and when it doesn't work, we try something different. Up to this point I feel like we've been optimistic, but I am totally fed up with not having a decent nights sleep. All I'm asking for is about 5 hours of uninterrupted sleep ... that's it! I don't think that's being unreasonable?! I've definitely "put my time in" and now ready to have some normalcy (whatever that is??).

I have no problem getting up early. In fact, I love getting up at 5am to work out and get my day started bright and early, but not when I don't sleep but 3 hours or so at a time.

The time has now come when Justin and I are both so thoroughly exhausted that we are considering that maybe she might require a medication to help her stay asleep. For the most part she goes to sleep fairly well ... mostly ... but the sleeping past 4 hours virtually never happens.

So yesterday, I decided to call Jocelyn's primary physician and informed them that we have to do something. All three of us need sleep and if Jocelyn can't do anything most of the day because she's too tired, then how are we ever going to make gains in all the areas that she needs? I am starting to think its because of her brain injury?

Apparently my attempts were futile as the doctor's reply was "well it looks like she has you wrapped around her finger ... I have no recommendations but to keep trying."

WHAT?!?!

I don't think he is understanding the gravity of the situation here!

 

In the beginning I could do no sleep, and when you have a baby, you should expect that. But now that we are almost going on Jocelyn being 3 years-old, somethings gotta give!

 

Right now we still have connections with the special care unit at Children's Mercy and perhaps they will have some suggestions on what we can give Jocelyn in regards to medication. I know several people try melatonin with their kids but with all of Boogies health issues and so forth, I don't want to just take a stab in the dark and go off trying whatever. Normally I would, but if I made things worse or God forbid if something else happened in our already chaotic world, I would feel terrible.

So here the hubby and I remain ... sleepless in Tecumseh ... and growing more and more tired as the day/nights pass. I will keep hoping that we will find something, whether its a medication or some miraculous non-pharmacological approach that will help us all to get the much needed sleep we need.

Until then, we will continue to sneak-in naps whenever possible.

Perhaps this is just the passage of parenthood and everyone goes this long without sleep? If this is the case, then all you parents that have kids that are grown and gone ... God Bless You!!

For the rest of us that are in the midst of downing ungodly amounts of caffeine, covering our blackened raccoon eyes, have extra weight on our bones and constantly fighting our uncontrollable urge to take our irritability out on whoever is in our presence ... just know this mama is right there with you!!!  We all will survive ... right??!!??

Hair Party

Since I had already got my workout done early this morning and daddy was home during nap-time, I took advantage of having a little bit of "me" time to actually do my hair and makeup for once. Seems like I never "primp" anymore so it was nice.

I snapped a quick pic with my camera phone.

I can't believe how long my hair has gotten because it takes SO LONG for it grow!

Apparently Boogie was loving my straightened long hair, so tonight was a "let's play with mamas hair" night! Boogie hasn't ever played with my hair like she did tonight and she found it both funny, weird and maybe a little awkward. She would giggle, scrunch her face almost like she was disgusted and then all of sudden was intrigued when she reached the end and it fell from her hands.

I must've laid in-between her legs and let her comb her fingers through my hair for half an hour. I loved watching her facial expressions and getting to gaze into her beautiful brown eyes. Its moments like tonight that I wish I could freeze in time and store away somewhere deep in my brain so I'll never forget and a disease like Alzheimer's will never rob from me!!

I couldn't believe she was combing ... with her fingers ... through my hair!!!

COMBING PEOPLE! That takes dexterity! 

I didn't even know she could do that with her fingers because coordination is difficult for her and often times her fingers can be sort of stiff. What's even better? She was doing it with her left hand! Whoa-wowzers!!! :)

She's so cute!

I think she's really starting to look like a little girl.

*sniff* *sniff* -- She's definitely no longer a baby!

Daddy decided after mommy's hair was thoroughly tangled and Boogie's slobbery fingers and hands had been wiped all over my face a hundred times, that a family picture was a good idea.

Still turned out cute and something to treasure!