The Next Step for My Bear

I have had many reach out to me wondering if Laynee has made any progress since returning home from our week long clinic to Nationwide Children's Hospital last month. I cannot tell you how much it means to me that so many of you have thought about her & prayed for her.

However, unfortunately, we were only traveling backwards in our trial of the medicine regimen. My little bear was getting frustrated & mom was a stressed mess as there seemed to be not one single step forward no matter how hard we tried. We worked daily with our Nurse Practitioner from the clinic making daily adjustments, however, we knew when the time came to call it quits as this was not going to work for Laynee's body.

So, after another team meeting there of the clinic staff, I received a phone call with the next step. I knew already in my heart for weeks that the Malone procedure was probably in her future. But, I was shocked over the phone of the additional step they wanted to make. As much as I really did not want to send my baby back in for another surgery, I knew we were just at dead ends & there really was not a choice.

Laynee's colon is extra long & extra curvy; especially in that tiny body of hers. Some people can live with a colon like hers with no issues; others cannot. The medicine regimen told her doctors just how much of an issue her colon was possibly causing. So, even though it felt like we just went backwards over the past few weeks, it did give us some needed information in which I have to be thankful for.

The last week of July, we will head back to Nationwide Children's Hospital for surgery. They will be removing part of her colon & putting in a Malone. For the Malone, they will connect her appendix to her abdominal wall & then create a valve mechanism through her belly button. This tube is how we will be able to give her daily medicine & in time, Laynee will eventually be able to do this all on her own in her own privacy! She will be in the hospital for at least 6 days after her surgery & we will need to stay a few more days in Ohio for daily checks before they will allow us to return back home.

This is the next step for Laynee. This does not "fix" her. There is still thought that her sacral nerves do not send messages to her brain either. This is basically a step that will make her lifestyle somewhat easier, definitely less private for her. Her medicine regimen will take about an hour out of her day but this will allow her a life with a lot less fear as she travels through her days & will help her confidence which at times has been a bit of a struggle.

I still have just under 30 days left before this occurs & I cannot deny that when I stop & think about it, I cry. I cry because surgery is scary & they are doing some pretty crazy & invasive stuff in that tiny stomach of hers. I cry because I hate that she is going through another surgery. I cry because it has been such a long journey for the past almost 4 years of so many trial & error stages with non-stop dead ends with no answers & no progress. We have tried every road, taken every turn we were given or could find; I've spent hours researching & tracking every part of her day. So I pray now this is going to help her live a better lifestyle. I prayed for years for her to "be fixed" and although that is not a true option, I feel we have been led in the right timing to the right doctors with a chance for an easier lifestyle for her. So, I cry because maybe, just maybe, her road will get a little easier & her daily frustrations & struggles will diminish.

Either way, she comments about this being the way God made her body & although she doesn't understand or like it she has to accept it, but I will tell you that maybe her body struggles functioning correctly, but He certainly blessed her with an amazing athletic talent.

Until Next Time~
*krisha*

It Is My Choice

I have started a blog post a handful of times in the past few weeks but always left unfinished. I have felt like I was hanging on by a thread for this entire month of June & although I had words I wanted to write, nothing was there. 

Yesterday I was home alone again & had been on an emotional ledge for weeks now & suddenly felt like I was about to leap off that ledge. I had to get out of my house for a bit. I needed to go some place else where I could just think, just be, just enjoy a beautiful surrounding. A place I could be alone, yet not feel lonely. 

So, I got in the car & drove. 

I ended up on the beach of Lake Michigan. 

I walked the pier taking in the fresh air. Enjoying the beauty of the water, although it was a very hazy day out. I sat at the end of the pier for some time just alone in my thoughts, in my memories, in my dreams, in my fears, in my hopes, in my prayers & in my heart. 

The truth is that sometimes change is hard. Even when you know change is coming or that a chapter is ending sometimes the reality of it all strikes you out of nowhere & what you have known to be your normal for years is no longer your reality. 

Maybe it is more like that thread you were barely holding on by to get through the days finally broke you free. It allowed you to step back & look at the big picture again. 

I have struggled lately feeling pulled in a million directions, all taking every ounce of energy out of me. Some days simply running my one single mile for my run streak feels like the hardest thing in the world to do. 

Right now, I have struggled accepting my new "normal." Maybe it comes down to even when you know it is time to start a new chapter, that first page can be hard to begin. 

As I sat on the pier I realized  how different each wave was. Some big, some small. Some weak & some strong. Some you could walk right through, while others you would have to fight with everything you have to stay above the water. 

The waves are just like the pages in our book. Each page can be different, each page has different words. Some deep, some simple. Some filled with love, some filled with tears. But, each page can be beautiful, just like every wave. We have the choice to scribe them full of love, beauty, faith, hope and our dreams and spread a positive energy for those around us. 

As I walked back towards the beach, I could feel the negative me that had been crying on & off for days was left behind. I could feel the strength coming back that I will need to embrace my new normal. 

No doubt I have struggles ahead, especially in the next month & a half, but I will fight to keep focus on the positives. I want to focus my energy on the blessings in my life & inspire me & hopefully others around me. 

It is my choice to focus on the positive & let go of the negative. I am not perfect. There will be days, but I will fight. This is how I want to live my life; shining a positive energy.  

So here I go. New chapter. New pages to scribe. New words to use. New adventures to travel. 

Until Next Time~
*krisha*

Why I Get Tears...

This picture. 

I have looked at it so many times since it was taken by my daughter.

I get tears. 

Every time.

Because.

You have no idea what that picture means to me.

When I look at it I see a woman celebrating life. I see a mama playing with her kids. I see a woman participating in life. I see a mama spreading fun & joy. I see a woman who isn't afraid to be herself. I see a mama showing an example of self-confidence & self-love. 

I did not used to be her. 

I used to be standing on the sidelines of life. I used to not love who I was or my body. I used to not be the confident one running around like one of the kids. 

This picture shows the mama & the woman I want to be. 

This picture was from a field trip to the sand dunes with my daughter & her fourth grade classmates. My Jacee, who is my biggest fan, told me she had informed her classmates that I would definitely be running on the dunes "because my mom works out a lot & runs marathons." I cannot even put into words how amazing it felt to be literally running up & down the dunes racing my daughter & her friends & even racing some of the boys who wanted a challenge. I was just like one of the kids. 

A few years ago, this field trip would not have been this way. I would have stood & watched the kids have fun. I was weak then, overweight, tired, and physically unhealthy. 

I also got in a few pictures with my daughter and her BFF who is like a daughter to me as well. I captured the memory for all of us; Jacee will look back & see her mom on this trip. Again, a few years ago, I would have stayed behind the camera not wanting to be seen.

It took me some years. It took some major failings. It took some tears. But, I have grown into the woman I have always wanted to be. I am exactly who I am & I am proud of that. 

This picture. 

Will always give me tears reminding me of the journey I have traveled & the path ahead filled with many more wonderful memories. 

Until Next Time~
*krisha*

Oh That Fear

You know what fear I am talking about, right?

I'm sure you have felt it. I'm certain it has held you back from something. I'm positive you have walked away from a dream because of it.

Have you?

That fear of failure...

I have. More times than I ever care to admit.

Years went by where I was afraid to put myself out there. In many areas of life. I was terrified of having to admit that I fell short. Afraid that I could not cross that finish line of a goal or a dream.

But, I finally realized living in fear was not enjoyable. Living in fear of falling a little short was not allowing me to live my life the way I wanted to; the way I was designed to live my life.

I finally woke up one day & had one of those life changing conversations with myself (am I the only one who has those conversations meaning I am crazy or do you all have them too??).  I came to the realization that it is truly okay to fail, to fall short of a goal, because it meant I was trying to do something. It meant I was using the gifts God blessed me with to make a change in my life & in the lives of those around me.

I told myself that I didn't need to be afraid, I just needed to be strong to get through the challenges that I knew would try to stumble me. I needed to be determined for the days that I did fall so that I could get back up. I had to stay positive no matter how hard or fast I fell because we never accomplish anything when we tell ourselves we cannot do it. Daily, I knew I needed to be sure my passion was burning so bright that I knew I would not give up.

Yes, I have failed. At many things in life. Some that are major & life changing. Others that are small & in the scheme of life do not really matter.

Guess what, I will fail again.

But, I am no longer afraid to fail. The fear of the possibility has no control over me. I want to live my life to the fullest; when my final day comes I want to leave knowing I used every single bit of energy & the gifts my body was blessed with. I want to look back some day when I'm ninety &  smile knowing I lived life out loud regardless if I won or lost. I want to know that I did strive to turn my dreams into goals, I loved big, I fueled my passions & hopefully along the way I left a positive impact & maybe even helped change some lives into better tomorrows.

So....today I say, "So what!" So what if you are striving for a goal that you have already fallen short of a 100 times, don't be afraid to try again. After all, you're still trying, you're doing something to improve your life or the lives around you so be proud. From my view, in order to be successful, you will have to know how to fail anyway!

Until Next Time~
*krisha*

A Wave

I did not see it coming.
I should have.
I sat up for hours in the middle of the night with deep thoughts, words buried in my soul that I had to write.
But, today, the wave was overwhelming.
Today I sat in church with tears running down my face.
I hid my eyes behind my hair praying no one would see the emotions.
The girl, this girl, who can usually find words to explain how she feels was left speechless.
I don't know what all was running through me.
But, the words, the words of the songs took ahold of me.
I stood there feeling unworthy.
I felt broken.
I felt lost.
I felt dark.
I felt hungry & thirsty for His words.
Words I haven't filled myself with in quite some time now.
It amazes me how sometimes we find ourselves right where we need to be.
I received the message with an open heart.
I snuggled my precious nephew as he slept so peacefully.
I opened my mind.
It was the message I needed to hear.
He loves me.
He likes me.
He is always for me.

Until Next Time~
*krisha*
  

Our Trip to Columbus

First of all, I have to say THANK YOU so much for those who sent Laynee & I messages the past week & checked on us throughout the week! Many of you will never understand how much your kindness meant & how much it filled the void from some we never heard from. I am blessed with some incredible friends, truly.

We got home last night after a long week. Last week, when we arrived I had a two hour lecture to attend in which I walked away with knowledge & an understanding I had yet to experience, but also feeling overwhelmed. Our Thursday morning began with a couple of tests in which more pieces to her puzzle were found & again more understanding on her issues. I was grateful for the technicians to show me right there & then on the images of her little body so I could visualize it all. 

After that, we met with the clinic team where we discussed all of our history, the things we have tried, what we have failed with or what we have found a little success with. Again, a very in-depth explanation of why her body struggles the way it does, how the shape of certain parts in her lead us to these issues & a plan. A promise that if I am willing to work with them we will get her to living a more positive lifestyle. 

I learned how important her diet is going to be for her life. This is that part where mom feels the pressure to focus on or years down the road, she is in for some not fun troubles, but if we can stay on top of it now the chances are good she can avoid some of that in her older years.

With the clinic staff, I decided to try the medicine regimen; the other option was enemas which Laynee has already been doing twice a day for the past 7 months. The clinic's goal here is to help every kid find the right "cocktail" the right dosage to help these kids function better. This happens with a daily x-ray every morning of the clinic & full-detailed daily reports to your nurse practitioner. Then, the clinic staff meets daily to review each kid & determine if the daily dosage needs to be altered or if we are on the right track. It really is a very hands-on team. 

Daily, we made adjustments. Daily, Laynee & I had struggles. Daily, she experienced some pain. Nightly, we woke up with issues & painful cramps & were awake for quite some time. Daily, she had tears & most days mom had tears she hid from her little bear. Daily, I explained to her that we needed to trust the doctors & to trust the process; even though mom was struggling with that herself. Daily, I promised her if she could work with me & focus with me, together we would get better.

We heard about three different surgical options while there that if we cannot correct it with these last few options that could come to the table for her. However, right now, this mama is very passionate about working her ass off to not lead us to that place. I will have continued communication with her nurse practitioner, & the occasional x-ray here in Grand Rapids, I am tracking everything she does & all the food she eats to ensure she is eating properly. I will give my little bear every ounce of focus & attention I have & pray that she & I can work together to hopefully improve her lifestyle. For eight days I have tracked & focused on her almost every minute of her day & will not stop until I feel that we are finally moving forward to success. 

We were able, with a whole LOT of patience on my part & her part, to squeeze in some fun stops. Many of them we had to bust out before we could explore it all but we still tried our best to enjoy! I never knew how cool Columbus was! So many fun things! 

We hit up the Columbus Zoo! 

 We hit up Cosi, the science museum - so cool & very hands-on! 

We went to Easton Shopping Center & met up with friends for dinner & of course, a trip to the American Girl Doll store....umm, yes Laynee's birthday shopping for July is already complete! 

And other days we weren't willing or able to leave the hotel or venture out more than next door! 

We missed our Jacee greatly, always wishing she was with us. Every night we FaceTimed her & could see how much she missed us in her eyes & written on her little sweet face. But, she was well-loved here at home, but oh the girl hug the three of us shared yesterday brought tears to this mama's eyes!

I cannot even begin to express how much this little bear amazes me. I reflected back a lot this week to day one of her life. All the appointments; the different specialists, her pediatrician & even the feeding clinic we had to attend; she & I attended from a week old to seven months old when I sat there in the surgeon's office & looked in her little eyes & knew she was sick & made the decision to proceed with her surgery. I took home a new baby a week after that surgery. Then, for the past almost four years we have struggled with this & also her sleep apnea with her tonsils & adenoids out last summer. I thought about all the IVs she has had in her & how much she fights the nurses to have them in, but when it comes time to take them out - my little bear amazes the nurses as she peels off every piece of tape & takes the IVs out on her own like an expert. 

Through it all, she's stayed pretty positive & will often say "this is just the way God made my body. I don't know why he did, but he did," with a smile. 

She is my feisty little fighter, a strong girl who no doubt is going to lead life shining a very positive light to those around her. I'm so blessed to be her mama. 

So this weekend, my little bear & I will continue to work together & tweak what we need to & make some adjustments to her diet. We both understand that sometimes things get worse before they get better. We both know we will have more days filled with struggles & days of tears. Together, we will hold hands & have faith in the process & in each other. 

Until Next Time~

*krisha*

Prayers for Team Laynee

My little bear & I, also known as "Team Laynee," are off again on an adventure, a search for answers.

Daily, I thank God for a healthy child. I know what we are fighting is nothing compared to what others have to endure.

But, at the same time it hasn't been easy. It's been stressful, scary, frustrating, and does cause some serious issues or problems.

Almost four years ago, Laynee lost control of her bladder & later a lack of control of her bowels followed.

We have tried many different medicine regimines, followed diets & even physical therapy.

The two of us  have traveled hours away to see specialists, we have seen numerous here in Grand Rapids as well. We have had some scary tests done to rule out certain cancers; we have had two MRI's done to check her spine & her brain. We have ruled out many, many scary possibilities. We have found some of the problems, some of the issues, but still some are unanswered.

There are many different pieces to the puzzle that are not always easy for mom to keep straight & pieces that cause doctor appointments to last so long as one piece can affect another in an opposite direction. I put a lot of pressure on myself knowing if one piece isn't kept under control, her life-long complications could be horrible.

I took her to PT for months & watched on her computer screen how her muscles work against her & for whatever reason, her brain cannot connect to the muscles to make them work correctly. She would try always giving 100 percent with no success. We would walk out of PT with her so frustrated & sad & wanting to know why her body was this way.

There have been so many days of tears, frustration, anger, embarrassment, and fear for her that at times all I can do is hug her & tell her I love her. A few months ago as we were at a point where progress was going backwards & my once pretty positive bear turned into a very negative one, I knew I need to push again for better answers. Her self-confidence was dropping, she was so scared of being at school, frustrated that she would never get better & a constant sad "I'm sorry mommy" to me even though I always told her she had nothing to be sorry for.

We met with a pediatric surgeon here in GR & started 6 months of research with him. We have gone through some different steps, different trials. Right now, we have been able to significantly lower daily accidents with her current regimine but it was just a temporary option, a step to trial & error her body. It is not something she can do long-term, in fact the last two weeks has caused some issues & some strong pain.

Her surgeon here has referred us to one of the best Children's hospitals for kids with these issues at Nationwide Children's Hospital in Columbus, Ohio. She & I begin another adventure for the next eight days there for a clinic where she will undergo some testing, we will trial & error some medicine options or regimines, meet with some awesome specialists & meet with one of the experts on the sacral nerve stimulation procedure to see if that  surgery could be an option for my bear.

We would love some prayers for our safe travels for us, some prayers that we can find more answers & a better, healthy lifestyle. Prayers for this mama to settle her nerves a little, I'm a little on the anxious side. Also, prayers for my little miss Jacee who is already missing mom & today is her birthday!