Two Angels on Earth

As we got to the hospital a little girl was in the waiting room. She walked over around the stroller to look at Taylor. The minute their eyes met it was as if two angels began to see each other here on earth after so many years. Taylor, who was very sleepy and quite began to giggle and thoroughly enjoyed her company at that exact second. She was a thirteen year old girl, who like Taylor was in the hospital frequently.

We asked what she was there for and she said very sadly she had to be put under for surgery again. After being born at 28 weeks she lived a hard life of constant surgeries and the usual medical problems frequent visitors of Phoenix Children's Hospital had. She showed scars on her neck and told us how she had a fundoapplication and G Tube to help feed her. Similar to what Taylor would be needing soon.

Two Angles on Earth

But, I strongly believe that Taylor has 2Q37 Deletion Syndrome for a reason. That she is not only here to help her family, but others as well. I saw how comforted that thirteen year old girl became after she saw how excited and giggly Taylor was with her. So no matter what had happened that day, I saw a miracle. I saw two of God's angels that had met again here on earth after so many years. I hope someday we see Latasha again and she lives a beautiful long life just like Taylor.

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.

YUM, YUM, YUM

Continued from last week...

So after the doctor gave us the okay to feed Taylor twelve spoons of Stage 2 baby food twice daily we went by the store and bought baby food right away. It was surreal weird, and crazy, all rolled into one. I usually avoided the baby food aisle or even looking at bibs for that matter.  So as I walked through the store I seriously wanted to break down and cry from joy. Instead, I became an overjoyed lunatic looking at all the jars of baby food analyzing them carefully, I’m sure I must have looked half crazy to onlookers.

Given that that particular day had ranked as one of the happiest days of our lives Taylor and I waited patiently until Max got home and as we sat as a family at the table to eat dinner so did Taylor as she too ate her baby food. It was so exciting! I know it sounds strange, but when your child gets pneumonia from her aspirating her own saliva, her being able to eat baby food was a major milestone. To me seeing Taylor eat that day was the equivalent of seeing her walk down the aisle, but she may never get that chance. That moment was so special in our lives that it was as if nothing else mattered and at that time, nothing else did. All I knew was my baby girl was eating like a big girl!

So we began to feed Taylor sweet potatoes and she continued doing well. Max had the camera prepared and we took tons of pictures. And I continued to keep my eye on Taylor like a hawk to make sure she had swallowed the baby food down the tube and was still breathing. And as you can imagine as excited as I was that she was eating, I was also a hot mess unsure if Taylor would choke. And of course she didn’t, she actually enjoyed eating every bit of her baby food.

Since that eventful day few weeks back Taylor has being doing extremely well with her eating. She absolutely loves it and now the possibility of her at least eating the frosting off her birthday cake is coming to life!

When I started this blog I promised myself to be honest as I wanted others to see our struggles and our triumphs, and to keep me honest I cried a lot over all the ‘what ifs’, as I had doubts, yes, I did I had many doubts.  But the reality is that miracles can happen and prayers are answered.  See one day I was bawling my eyes out next to a hospital bed crying over the fact that Taylor may never swallow and then months later I’m ordering a special birthday cake made of only frosting, ha, ha.

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.

Round Two

The day finally arrived!

The week was dragging like most weeks do when you’re anticipating a big day. I was eager to know if Taylor had improved on her swallowing. Shortly after we were brought to the X-ray room where Taylor was placed in a car seat like chair device and was strapped down a massive machine began to display an X-ray of Taylor’s swallowing.

The speech therapist and the radiologist were in the X-ray room with us and so began Taylor's second swallow study. Given how traumatized I had been the first time around, at that moment I was again terrified. Luckily for me that Max's mother had agreed to accompany me for that second test.

So in this room they did several swallowing exercises, first they handed me a spoon and a cup which contained a substance that mimicked that of twice the consistency of honey. "Okay, please go ahead and feed her." As I took the spoon and cup I felt strange and honestly had no idea what I was doing, but I began to feed Taylor who kept wanting to grab the spoon. Soon we were both covered with white cream all over us. It was everywhere, her nose, cheeks, chin, hands, legs, EVERYWHERE! She was enjoying it though!

As I listened to the doctors’ conversation I could pick up that Taylor was doing much better than last time. So, the tests continued and then they proceeded to feed Taylor the same substance (but only the consistency of honey) through a bottle.  Taylor began to swallow at first and it seemed to be going okay, my heart raced… But since Taylor appeared to be moving a lot the doctors seemed unsure. They then tried the test again with a more less consistency and that time Taylor began to aspirate so the testing stopped.

When I turned to the doctor he narrowed his eyes at me and asked, "Why are you crying? This is good news, isn’t it?" They were tears of joy, tears of relief, of course. I replied, "You have no idea how good. I have been wanting for this day to come for so long!" I had, I really had; I’d actually dreamt of the day Taylor would be able to swallow and imagined how I would react, and as I’m sure you can already deduce, yes, I wept.

Soon thereafter we were in a room with the therapist and she began to explained how Taylor's new feeding would go. As we were talking another nurse came in stating the doctor needed to talk to her. During her absence I noticed that Taylor, who was sleeping, was breathing differently and then suddenly she just stopped breathing altogether for a span of about five seconds! My heart sank and as I rushed to grab her Taylor then took a huge breath. Moments later when the therapist came in and I told her what had had happened she said, "That's what we want to talk to you about." The doctor replayed the X-ray video in slow motion and could clearly see Taylor was aspirating when she was being bottle fed. The doctor then said as a result of that we could not proceed with having Taylor be fed from a bottle.  So the therapist told us to continue feeding Taylor her usual twelve teaspoons of Stage 2 baby food twice daily, as this also a means for Taylor to get used to eating the consistency of baby food.

All things considered, I was pleased. All I asked of God that day was for Taylor to make an improvement and she did. She had made a huge improvement. I am so very thankful and so very proud of my baby Taylor.

Continued.... until next week.

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.