Greetings!! Catching back up after a delightful holiday season with the kids. Olivia did very well, each day becoming a little bit more devilish, destructive, and mischevious. And with each thing she does to drive me crazy a part of me thanks God she is able to do such things.
A few weeks back, Olivia had a cold. Now to most parents, especially seasoned ones, a cold is no big deal. To a mother who once counted her child's breaths per minute a cold sends a a mother into a full fledged panic attack. So off we went to the pediatrician, who said if Olivia was any other child he would wait a week to investigate further, but given her history he wanted an immediate chest x-ray. Let me express how heartbreaking and stressful a chest x-ray is on a toddler who doesn't want any part of such things. You see, Olivia spent the first part of her life being poked, prodded and examined by well over 10 different doctors. To this day, a doctors office inflicts a sense of anxiety over her. As soon as a nurse calls her name she starts screaming. And I can't say I blame her. She has had more doctors appointments that her siblings combined in seven years. At any rate, once the x-ray was over, and it was confirmed she did not have pneumonia I felt much better and so did her doctor. Just a typical day being a parent to Olivia!
Now here is what I hear quite a bit. "But she looks healthy". Well yes, she does. And she walks, and talks and will probably kick your kids ass if they try to take her toys but she is NOT 100% yet. She cannot drink liquids. Trying to tell a toddler they cannot drink a juice box like all of their playmates is heartbreaking. To watch my baby literally try to drink bath water, but then know she can't and spit it out makes me incredibly sad. And while yes, on the outside she is a beautiful little girl with a smile so bright she can light up an entire country, on the inside she is very delicate. So what happens when Olivia steals a drink of something? Well, some days she will audibly aspirate, meaning we can hear her cough and choke. Other days she will silently aspirate as she has done since birth and while the fluid is still going back into her lungs we can't hear it. This isn't just some run of the mill issue. This is a BIG DEAL. I try to be patient when people ask me what is wrong with my daughter. IN my mind nothing is WRONG with her she just needs a little help. Yet to try to explain is exhausting. People don't get it. So I just wish everyone would believe me when I say, I have spent more time researching her condition than I spent researching anything used to obtain my college degree. I am confident I am the BEST caretaker for her and the ONLY one who knows 100% how to take care of her. When I think something is wrong, I am almost ALWAYS right. Looks can be deceiving. I know because there was a time on the inside I was a total mess about her well being but no one would ever know it. And to this day, I still get worried, I wonder what will happen in the future, I wonder if they will ever fix this, and stress out about all the things I surmise in my head. But you probably wouldnt know that unless you are one of my close friends.
So here we are, almost a new year. Olivia will be two at the end of February. It seems like yesterday when I took the pregnancy test. From that day forward, Olivia was a challenge. She wouldn't show her gender on ultrasound, she had soft markers for Down's syndrome, she gave me extremely high blood pressure and forced me to be on bed rest for the last month of pregnancy but above all, she taught me how strong I am. She gave me a sense of completeness.
January 10th Olivia has her next swallow study and follow up with Dr. Rahbar. I do not believe she will pass the swallow study. While I try to remain optimistic, I can safely say I would be SHOCKED if she no longer aspirated. And from there we need to examine more options, wheather it be waiting it out, a second laryngeal cleft repair or something else, I'm really not sure. At the end of the day, Olivia is one of three people I love more than anyone or anything in this entire world. Nothing will ever stop me from getting her to where she needs to be. Never ever take for granted a healthy child. Let kids be kids, enjoy every moment, and above all, don't let the little things get in the way of the big picture.
.
