Being a parent means making many decisions based on what you decide is the best for your child. The amount of decisions to make increases and becomes more difficult when your child has special medical needs. I haven’t talked much about it but we are facing a few things with Kierra and it’s tough on Chris and I. We try to inform ourselves as much as we absolutely can, we get multiple opinions, and yet it still doesn’t feel good to make a decision sometimes.
One of the things we are facing is whether or not to put Kierra in a ‘MEHTA’ cast for her scoliosis. It is a torso encompassing cast that sometimes help straightens the spine or at least reduces the curve. Sounds great, right? Well let me tell you a little bit more about it. It goes on for approximately 6 weeks (she has to be under anesthesia while the cast is being put on), she’ll have a 4-6 day break, then another one goes on. This process lasts up to TWO years or more. While the cast is on, she cannot bathe. Sponge baths only. No swimming. It’s itchy, uncomfortable, makes sleeping difficult, tends to cause the trunk to become weaker. THEN add in the fact that Kierra has marfan syndrome, spontaneous lung collapse is a huge concern, her heart needs to be able to be monitored regularly, and the effectiveness is much less on a marfan patient. If we don’t do it though, and the curve in her spine continues to progress, it can effect all of her internal organs among other problems. Surgery will eventually be necessary to correct the curvature but the goal is to prevent it for as long as possible, while she’s growing. So another future surgery to add to our schedule. Though, we should count it a blessing she hasn’t had to have any surgeries yet, many do.
Another little issue is Kierra has to be under anesthesia in January for a cardiac MRI and echocardiogram. She will no longer sit still for an echo and we have to be able to see her heart. The MRI is to get a baseline since she has to go under anyways that we’ll be able to compare to the echo and make sure the measurements are accurate. Well we were suppose to have her spine get pictured as well but the pediatric anesthesiology team says it will take to long and they don’t want Kierra under that long. Of course, I understand this but now she will need 2 MRIs and within just a few weeks of each other. Putting her under so much is not a great idea but the need for the cardiac stuff is absolute and then the spine MRI, while it might be able to wait a short amount of time, cannot be pushed back much further. We don’t want her spine to progress past the point of the cast being able to do any good at all. It’s all so frustrating. Take 1 step forward, 2 steps back. The weight of the world is on our shoulders some days.
Our next issue is vaccines. Kierra just does not do well with vaccines, it’s about a 2-3 week process for her to fully recover. She has all the typical ailments, sleepy, eats less, grumpy, etc. Then there is just a lot of general weakness in her body and she is fussy for at least a full week. She is not herself. It breaks my heart. We’ve talked with her pediatrician about it and we’ve decided to do 1 vaccine at a time from now on and see how that goes. Hopefully that lessens the blow for her but it adds more doctors visits of course.
So those are a few of the main conerns for Kierra at this point. Never an easy day but her smiles and kisses, my God, they make it all worth it. I see a lot of parents struggling with far more difficult situations with that marf loved one and it wrenches my soul. One, because it’s awful. I feel for them. Two – because I know we may face these things with Kierra. It’s disheartening that’s for sure. But the strength these parents and caregivers have…it’s other-wordly.
Now I want to tell you a little bit about Kierra. She is AMAZING! I know, all parents think that about their kids, and they are right too. She really impresses me though with how intelligent she is. At 13 months of age she understands most of what we say. She signs at least 41 words and when I say she does this I do not mean she did it one time and I count that. She uses these 40+ words almost everyday and understands their meaning. She says about 10 words verbally. She outsmarts me on a daily basis, I am in TROUBLE people. She LOVES to ‘read’ with us, turns the pages, signs an animal she knows if she sees it in the story. She knows animal sounds like Cow = moo and monkey = ‘ooh ooh, ahh ahh’. She knows where her ears, eyes, nose, mouth, toes, knees, fingers, belly button and hair are. She knows when the dogs are being naughty and shakes her finger and says “AH AH!” to them. She loves to pick up a stuffed animal hug, kiss and snuggle it, then ask you to do the same. She is serious about stranger danger, especially someone with a hat on, but if you smile big enough and talk sweet enough, you’ll get a smile out of her in no time. At therapy, we have to break out the IPAD to distract her sometimes, and I am just floored by the way she catches on to the games on there and figures out what to do. She already knows that swiping with a finger on my phone, changes the screen. There are just so many things she does that astound everyone she comes in to contact with. She absorbs everything around her. She loves to learn and it makes her happy and proud when she sees that we are happy for her to know something. She’s a special girl. I don’t think she’ll be performing brain surgery at 11 or anything but she’s definitely intelligent. She takes more and more steps by herself each day but she is definitely taking her time to really walk and we’re okay with that. Her joints make her feel unstable and less sure of herself than a non-marf baby might, but she’s figuring it out. The best thing about Kierra, she is so incredibly loveable. I want to hug and squeeze and hold on tight to my little boo. God gave me such a tremendous treasure in her. Christopher and I pray over her every single night and I know God hears us.
So pray for Christopher and I as we continually face tough decisions for our little girl. Sometimes after all the research and doctors we talk to, we also have to listen to our parent ‘spidey’ sense. I believe it’s an instinct and I feel it very strong sometimes.
God is good