Follow us in our journey as a family. We have been blessed with two amazing children. Lauren is an amazing girl who keeps us on our toes and Evan was born with Spina Bifida and continues to amaze us with his spirit and strength
I have a seven year old. SEVEN. How did that happen?
My beautiful daughter turned seven on Monday March 28th. She came into this world 5 weeks early. Her original due date was May 3rd, my moms birthday. The moment I knew her due date, I knew she was meant to be mine.
It is so amazing to watch your baby become a person. She has a personality all her own. She is defiant, curious, creative, funny, sweet,sassy and everything in between. I have seen her be an observer, a leader, an artist a dancer and an amazing big sister.
Days like today remind that beyond all the medical terms, doctors appointments, medications and worries, Evan is just a baby, our baby. He is our last baby and I am trying to cherish every moment. Every first, every last.
We started the day shopping for new clothes for Evan. He is finally putting on weight and growning out of his clothes. Until recently he was still wearing clothes I got during my baby shower. He is still so tiny he can still fit in some of the same clothes he did this time last year. At last check he was 18 pounds!
We then took him for his first "real" haircut. I have trimmed his hair a few times before at home, but nothing too much. He did so good. I held him and he just sat wondering what was going on. I sat thinking, my baby is growing up...to fast. But I must admit he looks absolutely adorable!!!!
I took Evan back to the ortho today to see how his broken leg was doing. They took and x-ray through the cast that was put on last week, only to show the bone had moved back to where it was prior to the first casting. After some discussion we decided to take off his cast, reset the bone and recast him. With a kid who has feeling, they would be put under IV sedation for this procedure, but they felt Evan would be fine with nothing. He screamed the first time, he screamed this time. I truly don't think he has much feeling in his lower legs, but I wish they had been able to give him something.
After the new cast was put on they did another x-ray to see how it looked and the bone had slid again during the casting. The PA who we were seeing said that a 2 to 10 degree angle on the bone was considered acceptable, but after the second cast Evans bone was at a 14 degree angle. So, I realize it is only 4 degrees, but to me, thats too much. I have a kid, who's walking ability is already compromised and I don't want to do anything additional to add to his challenges. So the options we were given were we could take the cast off, reset it again and recast it a third time, cut part of the cast away and put spacers in the cast to push his leg into place, but because of his lack of feeling wasn't the best choice becuase they sometimes cause issues and Evan wouldn't feel it as a way to let us know or do nothing and reckeck the leg next week.
I am not thrilled with any of these options. I asked him if our regular ortho, who has seen Evan since he was 5 weeks old and has done several surgeries on him knew what was going on with him and what her opinion was. She was at another office, so he called her, she said she was fine with the way the bone was and to follow up with her next week. I am frustrated. I explained my frustration to the PA. I try so hard to advocate for Evan, but at what point is it advocating versus being a bitch. I know I am not a doctor and I try not to second guess their knowledge, but this seems unacceptable to me. I want his leg straight. If that means surgery, than so be it. I want his leg fixed.
So we return again on Monday to see our regular ortho doc. I never try to sound negative, but I don't expect much improvement, what I do expect is better options.
The last two weeks have been great! Evan has been feeling well, happy and gaining weight! We were smooth sailing...until....
Yesterday I took Evan to his pediatrician for a recheck on the ear infection he had a few weeks back. He had already had two courses of antibiotics for it and I figured it was probably gone. I guessed wrong. His ear still looks red and inflamed and we were started on a third course of an even stronger antibiotic. Our pediatrician also gave us a referral to see an ENT to discuss the possibility of tubes. She's not convinced that he needs them, but wants us to see them regardless since this is his first ear infection and it has been so resistant. I can handle that. All kids struggle with ear infections. But then...
Last night as I was getting Evan ready for bed I noticed his lower right leg was red, hard and warm as it had the the night before. The night before I thought it was due to his AFO being on too tight. Last night I was feeling around his leg and could literally feel his bone move back and forth. I was literally sick to my stomach over it. We were just making progress with him after his surgery. Things had been quiet for a while. I wanted to scream. I took him to see his Ortho doc today and sure enough, he has a break. It is a slanted break so I was told that they would try to set and cast it, but it was similar to putting a ball on the top of a hill, that there was a good chance that the bone would move back down itself on its own. Because he can't move his lower leg, it help the situation, but if it doesn't work, we are headed to surgery.
I was so enjoying some peace and lack of doctors around here. It's just another bump in the road, but one I was not ready for.
There has been a whirlwind of SB kiddos in the hospital this last week and it has gotten my mind going. We have also welcomed two new babies into our special SB families.
It breaks my heart whenever I know another kid is in the hospital. It is awful what our kids have to go through. But it also really hard on us moms too, and dads and siblings and everyone in our lives how care about us and our kids. We ache for what these kids have to go through.
Whenever their is an issue going on with our kids, our SB family surrounds that person with love, support and tons of prayers. For me, I ache with them, as we have been there too. Feeling alone and scared. Not always knowing what the right decision is. Being stuck at the hospital, feeling like you are trapped inside this other world, where the rules are different and the consequences are monumental. Missing your friends and family. Missing other special things in our lives. Birthdays, school events, sports practices and games. Missing your own bed. It's hard, really hard.
I worry about what will happen when Evan gets older. How will he handle these hospitalizations? Right now, he does so well. He has spent so much of his short life having issues, in the hospital, going to doctors appointments, having therapy. I wonder how that will change when he gets older and realizes not all kids have to go through what he does. I hope he has a bond with other SB kids that give him the support I get from my SB friends.
So to the Summers, Ross, Honey and Deisher, families (and those that I may have missed) out there having a tough time, I understand. I wish I could do more. I wish I knew how to make it better for Evan, for all the kids.
Congratulations to the Kern and Ramsumair families!!