The past year (and a few months) since I wrote has been full of so many memories.
- Surgeries and hospitalizations (because that seems to always be part of our story)
- An Amazing trip to Disney World for Callie's Make a Wish WI trip. I will blog about that soon because I know so many people are waiting to hear all about it
- Happy times with our family - and an pig roast with Family and Friends
- The birth of our first blood niece (because we have another)
- Proud God Parents to little miss Hannah
- Shared Blessing, Inc. Touching more families! I could never have done this alone - what an amazing co-founder, board and volunteers to make this such a priority that touches so many lives.
- A trip to Mexico with my mom (First one is 7 years)
- My Jaw surgery
- My best friend supporting me every day - followed by a kiss good night.
- The nurses, Friends and family in our life that share in our life daily with us.
This past Feb we had a shocking appointment that has forever changed me as a Mom. Callie turned 6 just a few weeks earlier, Zak on his way to 10. Such a proud mom I am how far they have come, especially the past year. They are so happy and have such amazing educators all around them. Both walking fairly well with some assistance makes me so proud. That was all I could think about. We spent the night in the hospital for a sleep study with Callie - I was not expecting any new information. We knew she has severe sleep apnea. So that was expected to hear. Still just hard to hear that we are doing so much with her nose and not gaining much ground. Then she had a sedated MRI since we have not looked at hear head real close in a long time. This would help to gain some additional information if she still has enough room in her head or if the mid face surgery is a must. I knew at heart what the answer was going to be. I was just praying for different results. As prepared as I was to hear what those results were it still just stinks. Then came the shocker - Callie needs neck surgery..again. I thought we were past this. What. Her first two vertebrae's were growing inward making the room for her spinal cord too small. This is the same thing Zak went through. I thought we would avoid this with her. Yes - I am still in a little shock and it has been over a month. Then followed by - her ventricles are large as well, we need to tap her shunt. I wanted to puke, I was still absorbing neck surgery. So they taped her shunt to find there was not great flow and possibly had a clogged tubing or something malfunctioning. The whole thing is still a big haze. More tests, more doctors, more conversations and in less than 24 hours she was in surgery to replace some tubing. Chris went with her and I went to work. Someone needed to stay home with Zak. It breaks my heart knowing she is in surgery and I am 172 miles away. She had her daddy with her though, and he is such an amazing father. My kids are very lucky to have a father who cares so much for them. His eyes glow when he talks about how proud of them that he is. 2 days later they were home and the shock was starting to mellow out a little. 1 week later though the panic set in. There was a leak from the incision site, spinal fluid. Back to get stitches and stop the leak followed by a week of antibiotics in hopes to avoid an infection. At our follow up the doctor wanted a spinal tap. I never even thought twice about it when Chris told me (he is the one that took her in). The next day they called to tell us we needed to come in to have the shunt removed. Shock set in again. What on earth, she was not even symptomatic. She was my happy little girl crawling around. Chris brought her back in and out came the shunt. 2 days later they did not come home like the last time, but I drove over to MN to switch out "duties" with him. Today is the 5th day in the hospital and part of me is broken. I just want my baby girl to be home with all of us playing on the floor. This was our first real holiday in a long time we spent in the Hospital (sorry, I don't consider Halloween a "real" holiday). I sat her reflecting on Jesus, and saying my prayers. Thinking of the families I know that don't get to spend this holiday with their loved ones - especially their children and how selfish I am being because I am sad we are in the hospital and not on top of Rib Mountain with my family at Church. I am trying to be strong for my Family - especially Callie. I woke up today thinking it is a new day and we are one day closer to going home. Test results came back negative - we need to just wait to make sure they continue to stay negative. GREAT NEWS. I really needed that. And then for the first time ever as my friends asked me how am I doing I just responded - Sad. I don't usually show my emotions, its just easier to be factual with what I know from the medical stand point. But today I am Mom, I am Zak and Callie's Mom and I am sad that Callie has to be in the hospital and that I did not get to tuck Zak in Bed, but I am also so incredibly grateful that I get to be here with Callie and hug her and kiss he and love her up any minute that I need to because my biggest fear is too lose her. Thankfully God has blessed us with such an amazing group of caregivers and this was caught before it was too late. So really siting in the hospital is not the worst thing. We will get through this and soon we will all be snuggling tight on the couch.
When I started this I thought I was out of words, but I realize I had so many more.