Friday, May 22, 2015

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~

No comments:

Post a Comment