That One December

Because of some unfortunate events this December I was hesitant to post anything about the central line and transfusion that took place on Dec 21st-22nd. I didn't want to jinx JoJo and cause a delayed allergic reaction or infection to occur. Now that it has been a week, I think it is safe now to say that the central line is looking great and the ERT (enzyme replacement therapy) went splendidly!

Because it was our first ERT we had to take vitals every 15 minutes for the first two hours, then every 30 minutes for the last 2 1/2 hours. All of her vitals were perfect and there were no signs of any allergic reaction. Since the infusion, we we have noticed JoJo having a little bit more energy than usual. She is incorporating her legs into her play and rolls to her sides more often which is a huge improvement. These are small victories, but exciting to see as parents. We just want her to enjoy being a baby kid and we want her to learn through play just as other babies do. ERT will slowly help her body build muscles needed for rolling over and other awesome baby moves. Along with gross motor skills we are hoping her heart will shrink to a normal size which in turn will help with the overall function and efficiency.

We consider JoJo's PICC line the newest member of the family. It takes more effort to maintain than a gold fish. Since the catheter tunnels through her skin, it is more prone to infection. We have to keep a dressing on it 24/7 and flush the line every 24 hours. It's interesting to play doctor every day on your kid. Something I was never expecting as a new parent. We have to scrub the cap and line with an alcohol pad for at least 30 seconds, inject 3ml of saline, then 3ml of heparin. I courageously changed a dressing for the first time and it was stressful, to say the least. I have to wear a mask and sterile gloves and redress it in a timely manner.  Doing this while JoJo was screaming and crying at me was not ideal, but we managed. The down side to the PICC line is that we can't do baths like we used to. The line cannot get wet or be submerged, so the bath is a little shallow... Not optimal for splashing and leg kicks. Bath time was the only time of day where all of her limbs were able to move effortlessly. She would smile and scream and was simply pleased as punch. Now it's a shallow bath with careful sponging around the (not so waterproof) waterproof PICC line dressing cover. Don't worry, bathing isn't terrible for JoJo. She still loves it and I am sure the warm water on her legs feels great after a long day of learning new tricks. 

I have been getting so many comments about how positive we are and how strong we are as a family. Thank you for your sincere compliments! Yes, we are being strong and we are staying positive. But, please to those who are reading, please don't think that we are handling this tragedy entirely with grace. Our hearts ache and our hopes and dreams for our child have been altered. I want other families to know that though we are putting on a brave face, we are still heartbroken. Some days are easier than others. Then, on a rare occasion, the world seems like it is going to end and punching a wall or screaming into a pillow seems to be the answer (all of our walls are still intact). But it isn't going to end, it is just going to be hard. We won't love every step, but we will make it through. Heavenly Father has a plan for all of His children and it is a perfect one. But, in its perfect design, it is still hard to accept at times. We all will pass from this world, some earlier than others. In our hearts we know that our family will be together again in a more perfect world, with our perfect healthy bodies. What is the purpose of this life if we are to just lose the ones we love? Josephine is our baby girl and we will love her and do everything in our power to care for her for however long she is with us. We will always be her parents and she will always be our daughter for all eternity.

Our family wishes your families (belated) happiest of holidays and a better new year!

Seguras