Fitting Chloe for orthotics is much like tying down a wildcat and trimming their nails. She hates and I don't use that word that often getting her feet touched. The idea of holding them still to measure them for special shoes goes above and beyond the level of torture she wishes to endure. It took two of us to hold her while the technician measured her feet. After taking a deep breath and calming down she was able to sit on my lap and look to see what kind of shoes she wanted. They come in all patterns and colors. I have to admit I was a bit overwhelmed what I should pick. She had at that time just started getting into books and turning pages so she thought it was a great deal of fun to look at the book. I had given up on picking a pattern when she kept grumbling at me and taking the book away. The technician noticed, before me her always attentive mother (ha) could that she seemed to be drawn to a particular pattern over and over. It is the ladybug pattern. One of Chloe's all time favorite toys is this spinning toy filled with ladybugs. I thought perhaps it was only because of the noise. Apparently, over time now, we have realized that she loves ladybugs in books, her toys and on her orthotics! I have called her many things since birth and one of them has been buggie so I guess it only fits!
After two weeks wait her orthotics arrived and began the process of breaking her into them. We could tell the difference almost immediately. She began to tolerate more tactile exposure to her feet and lo and behold she actually began to bare weight on her feet. Most days she no longer fights to have them on. Every once in a great while she wakes up with a tude and then all bets are off.
Nissen Fundoplication update:
Since the placement of Chloe's original g-tube in February of 2009 Chloe has slowly started to make important gains. Before she had this placed she was unable to lift her head up for very long and the idea of rolling over wasn't even a thought in our minds. Even through pneumonia after pneumonia, MRSA infections, other types of infections and normal illnesses brought home by her siblings from the germ infested schools, she was beginning to show her true nature. Its amazing how much having good nutrition has improved the quality of her life and our lives as her family. I didn't think we would ever have it any better than we did at that point in time. Even though we struggled with illnesses she was rolling over, beginning an army type crawl and was a non-stop ball of activity. I couldn't have been more wrong!
When Chloe had the Open Nissen Fundoplication surgery to deal with her constant reflux and the pneumonias that seemed to follow, her whole life changed. Prior to this Chloe had been stuck in a feeding chair for an hour per each feeding. This occurred four times a day. So four precious hours of Chloe's day were wasted, in a sense, due to being stuck in this position. Other than using hand manipulatives and such we really couldn't do much with her. After her surgery her feeding takes approximately fifteen minutes four times a day. An entire three hours has been added to her development and growth period. I feel this has greatly improved her ability to become an extremely different person.
Shortly after the surgery Chloe went to a full crawl...no more dragging this girl's belly. She had been able to sit for short periods of time on her own and sort of go from sitting to laying down back to sitting unassisted before the surgery. Now she was sitting for as long as she pleased, going from any position she wanted basically unhindered by the lack of muscle control needed to perform so many "normal" actions we take for granted in a typically developing seventeen month old child! This became increasingly apparent to us when our PT came to our home after having not seen her for six weeks while she was on maternity leave. She walked in the door saw all that Chloe was doing and said, "Well I guess I will be re-evaluating her goals as she is currently doing everything I figured we would need to start working on!" Music to this mama's ears!
For months I tried to get Chloe's GI to listen to me regarding how much her inability to eat due to her reflux was holding her back. For months I researched and talked to people not only in our 1p36 Deletion Syndrome support group but others who had children requiring this type of surgery. For months I was shot down by my doctor as saying this was an unnecessary procedure. Finally, finally, finally....I got one doctor to listen to me and to my pediatrician regarding our concerns for the condition of Chloe's lungs, her overall health and how much having this constant reflux was holding her back from even making noises. How would you like to have acid sitting continuously in your throat? I dare say none of us would be as happy and as productive as we could be if we lived under those constant circumstances. Some people might say this was an unnecessary procedure with risks that didn't need to be taken. My answer to them is, I am her mother and I will do whatever it takes to help her be productive, happy and lead the best quality of life she can possibly have. I went into this procedure sold on its benefits and came out of the process wishing I had changed doctors sooner. I will be forever grateful to the GI that placed Chloe's original button under emergency conditions. He saved her life. However, I refuse to just stop at what is necessary to keep Chloe alive and always, always, always push to do what will give her a life!
Wow...that sounds a tad bit soapboxey, oh well....I have never been accused of being a quiet person!
Our Little Red Riding Hood...Halloween 2009!
