Derik and I get a lot of reality checks. Some are very eye opening, others you can brush off. Usually when it comes to Zoie all, they are very eye opening . Its as if God is saying, "hey don't get too comfortable over there." I wish he would let us stay comfortable .
Now when I write these posts, im writing to share. Some may call it being vulnerable .... I call it opening up, putting my thoughts on paper, asking for prayer, and hopefully in the meantime helping people who may eventually be put in a similar situation wondering what to do.
We had been on a four month waiting list with the feeding/speech/other clinic at children's. If you didn't already know they are all intertwined :-) I was nervous for today, it's always tough meeting with a new clinc seeing as we hadalready see three others.
If you want to be intimidated, go see the feeding clinic. Six different specialists watching how you feed your daughter, drilling you with questions, and expressing concern.
The reason we signed up to see the clinic is because Zoie has a tough time eating. She gags easily , only can handle eating pureed food, and coughs a lot when drinking liquid. Just some concerns from Derik and I. We want her to get better at eating and it's kinda over our head now.
All the specialists were some of the nicest people I have ever met. Very passionate about what they do. I think what got me was there concern for Zoies safety. I went into the appt thinking they would refer us to a feeding therapist. Instead we got told that Zoie may, not that she does, but she may have an underlying internal issue that's not safe for her to be eating.
We have to get a barium swallow study done where Zoie will eat different textures and they will see what happens and where the food ends up. This will be in a few weeks, and until then, we will keep feeding her like we do.
There are several scenarios the give you. There may be nothing wrong and she may be able to continue to eat and just need therapy to get better. There may be something wrong that can be corrected with surgery . Or, there may be something wrong that can't be coreected and we would then have to do all G tube feeds for Zoies safety of aspiration or choking .
As the parents of a special needs kiddo, who is normal in some aspects, and not normal in others, you want the best quality of life for them. We want Zoie to keep eating and get better and better just like we want her to walk instead of be in a wheelchair .
But honestly, and this isn't just with Zoie or special needs, it's with anything in life. Its not all in our control. A lot of it is in Gods hands. As I have told myself over and over, Zoie will do what Z
oie will do.
As I had this conversation with the doctor and OT therapists I started to cry. And as I cried they cried with me. They reminded me of how happy Zoie is, and how well she really is doing. I am pretty sure all of Zoies doctors have now seen me cry. I sometimes wear my emotions on my sleeve and no, I am not always strong. I fall and I get back up.
I refuse to let todays appt consume me. We have an awesome summer to enjoy, and know matter what God will take care of us.
After a nap and a glass of wine I was reminded of my many blessings . My life, Zoie and all the awesome things she has taught us, her smile, my amazing husband, family, beautiful Colorado.... So much to be thankful for. I guess when you get caught up in a situation, it is a reality check that life will take us to unexpected places , but it's always okay. Always.
On a very happy note, Zoie finally started gaining weight so all of that hard work her a d I are doing together with her eating is paying off :-) Finally over 16lbs!!
Ill leave you with a quote that i found myself relating to today <3 “You know, through pain, you learn a lot about yourself--things you thought you never knew you wanted to learn. And it's kind of like those animals that regrow a part of their body--like a starfish. You might not feel it. You might not even want to grow, but you will. You'll grow that part that broke off, and that growing, that blooming--cannot happen without the pain.” Kelle Hampton.
I remember when you were born, 4 very short years ago. School wasn't even in your dad and I's minds. It's almost as if we forgot that when you have a child, part of them growing up is sending them off to school. You would think this would have crossed my mind being an Elementary Ed Grad, but we were so caught up in the now, and making sure we took our lives day by day, that no, school never came up. We decided to keep you home for your first year of preschool, due to your Cystic Fibrosis and learning delays. We wanted to strengthen your immune system an extra year, keep working on home therapies to help your brain development, speech, and muscle movement. You also had a very special friend at home to learn and grow with you; your baby sister Ivie. The last year you two have taught each other so much, she has pushed you, and you have pushed her. I'm so thankful we kept you home for that extra year! We have found a great preschool for you! It's called the Monroe Ear
Comments
Post a Comment