So, even after we started February off in the hospital for a few days, Kerstin's lungs and chest were clear when she had her follow up appointment. Her pediatrician was pleased with her progress on the 17th, which was also her granny's birthday. He was also happy with how well her back has heeled from the November spinal fusion. At the end of her check-up, her doctor stood at the table and told me that he just wanted to say that he was impressed and had to commend for the care I take with Kerstin. He seemed to get a bit choked up and said that Kerstin looks good and appears to be a healthy child and that he knew it couldn't be easy. I told him that it gets hard at times but, I wouldn't trade it because I love Kerstin and she's changed my life!
No, it is not easy. But, what about life is? I know people say that it gets hard, it gets rough and I say I understand. Until you've walked a mile in the shoes of another, you never know what they are truly dealing with.
Now, yesterday, Kerstin had her orthopedic follow up! More x-rays! Her doctor enters, and looks happy! We live for these moments! He said that Kerstin is in a growth spurt (YES, indeed). He said her x-rays look great, her fusion is coming along nicely, all the rods and screws are in place and there is NO arthritis in her hip!!!! HALLELUJAH!!!
He asked how was handling her since the fusion? I told him she's getting heavier since her g-tube, but I'm handling her. He had to clarify the question. Was she more difficult to lift, change, bathe, dress, etc... NO, not at all. For the first time in forever, I have been able to put her in her bath chair and step away without the worry of her falling into the tub. She sits on the sofa or in bed without flopping over. She sits up straight in her wheelchair now (it either needs major adjustments or a new chair needs to be ordered). Kerstin still gets some congestion but its not like before surgery, her breathing seems more stable.
It amazes me how much posture and the the breath affects the entire body. My daughter seems happier since the spinal fusion. At first, I was completely devastated when he told us that she would need the surgery. I started my own research and got overwhelmed at what was found. All I could think was, my daughter has to have her back cut open. It really got to me at first. Now, I'm glad it's behind her.
Dr. Killian, asked Kerstin's mommy, ME, if I could be a resource for other parents who may be preparing their child for the spinal fusion?! I happily agreed! There may be another family out there about to approach this surgery and their child can NOT do the required walking as therapy after the surgery. Their child may be like my child, dependent upon family, nurses, and other therapists for every moment they make! It's hard and it may seem like a long road is ahead of you, it whizzes by and in not time you will get the all clear for your angel to return to school!
For the first time in 4 months my daughter will return to school next week!! This stay wasn't only because of the fusion, she had complications after surgery and an extended stay, then another hospital stay 3 months after surgery. We made it through it all! We will start slow and do partial days for a while but, she's able to go back to school!
More to come...