It's now 2015. A new year, new beginnings and an opportunity to have a positive change. Danielle is now almost 3 1/2 weeks post surgery. Forgive my lack of updates, things have moved pretty fast. Danielle had surgery and literally went home a day and a half later. We were over the moon, excited, happy, she would be home for Christmas right! What we failed to realize was how slow the process would be. During this time is has been faith and people who have helped us to stop, slow down and remember our blessings, for at moments time seems to stand still.
We got home at 6pm on a Friday night. Our nursing company Case Manager promptly came over to re-admit her for care. We literally had been home for 10 minutes, she was here and we had the door bell ring. I was in the kitchen, Brad ran to grab the door when all of a sudden I heard music and then singing. The most beautiful site, the most heart warming group of people filled our front yard singing Christmas Carols. It was so precious. They had absolutely NO idea that we were home or even would be home. It was led by Danielle's 1st Grade teacher. She thought maybe just Dylan would be here and maybe he would like this, yet the surprise of all of us home. It is when the Christmas Spirit officially filled my heart.
After Christmas things were ok for about 3 days. I went with my siblings and Dylan on the trip my Mom planned for us before she passed away. Brad gave me his blessing to still go and he would care for our girl. Then things changed..... If this sounds like a whirlwind with my mixed emotions, it was. It is.
She got stiff, wasn't eating well, HUGE lack of sleep, fussy, and it went on and on and on. Not breathing the best, treatment after treatment consistently. The fear of taking her in, for fear something was wrong, or if something wasn't wrong than would she be exposed to something because of ALL of the germs right now. Our mind was a whirlwind. Something had changed and it could not be pinpointed. This continued for over a week.
Yesterday I finally called Iowa City. We were seeing similar 'symptoms' to before the scary moment happened in November. Which would never have been symptoms before but could possibly be symptoms to us now. They got us in first thing this morning.
Brad took her in, thankfully the snow storm was over and the roads manageable. They did an MRI. He met with the Neurosurgeon who had done the surgery. Oh did I mention that we NEVER saw him after her last 2 surgeries, so we really had no clue what was done. I mean the Residents vaguely filled us in, but we never heard for the surgeon himself. Today we would.
Her MRI looked good. Her left Ventricle was actually smaller than it was pre-concern and surgery, from her last scan in like August. Her stitches came out, this means our girl can have a long awaited Bubble Bath!!!! AAAHHHH!!! One of the things she loves the MOST! Her tone however is a puzzle piece we haven't found yet. Her actions are not quite showing us that our girl is fully back. When I got home I got smiles and giggles, thankfully, because Daddy hadn't seen many of those in a week. Today we have few smiles. We have learned things have changed....
Our girl is now 6. She is smart. She FULLY knows what she has gone thru and what has gone on around her. Is change good? The jury is still out on that one.
I will be brutally honest here. If you have a healthy child with no special needs, please please PLEASE, count your blessings. At times this life is hard, yet it is all we know. I do embrace it yet it some days is a struggle. I long for the days of my giggly smiley girl. Her smile still lights up the room, but the days where she would giggle non-stop all day, just because. As tears flow down my face I long for those days. I want to make it better, I want to heal her and make her comfortable. This is the year for change and some way, some how we are going to make it a GOOD Change with a Capital 'C'! I am going to get my girl what she needs. There is a list I have in my mind with goals, places she needs to go and people that she needs in her life. This mama is on a mission. And even though these tears fill my eyes because its a little scary, that's ok, because one thing I will never do is Quit. I will never give up on the best for my girl. I will bring those smiles and giggles back someway or another. She will always know she is loved. She understands when I speak of this to her. It won't be easy, but nothing in life came free or easy right! What you work for, the greater the reward. The reward being the BEST for Danielle. So change, I will learn to embrace and make this the BEST year for her yet. The medical professionals told us today, from their standpoint all in her 'head' looks ok, so we move on to boosting her immune system again with all natural products, and the rest is in my mind...stay tuned for a great 2015 for our girl!
Thank you for following along in our journey. Thank you for praying for us. Thank YOU for being an ear to listen. Thank YOU for supporting us in so many ways. We have had so many people reach out to help who didn't have to, but they have wanted to help and it is a humbling feeling being at the receiving end. Please please, hear my heart felt Thank you. You have been an angel to our family in some way or another. We are forever grateful. Thank you for believing in our girl too. Please do my heart a favor, say a prayer in this moment and count your blessings, one by one, and forever be thankful.~
Celebrating our favorite person today!
9 months ago