This year...

I have literally written thousands of words about Sophia! I could and will write thousands more. What surprises me still are the times she leaves me speechless. Sophia has just turned 4 and this past August blessed us with her beautiful voice! It continues to grow and develop. Her words take the breath from mine. This week, we traveled back to Cincinnati Childrens for another around in the OR and for a capping trial of the trach. Sophia went in to the OR with a team of 5 plus doctors who all took turns with various scopes and swabs and biopsies of her airways, lungs, GI systems etc. they placed a video probe up her nose and down into her stomach for 24hrs with a recorder. They gave her 4 injections of Botox into her salivatory glands, and downsized her trach. She came out of the OR very tired and a little grouchy! We managed to cap her trach for 1 hour and 25 minutes before her stats dropped during her sleep. She slept from 530p until 1am straight. The next morning she was able to have the probe removed from her nose. Much relief was felt having that extra baggage removed! After breakfast and a brief walk, we tried the cap again around 10am. Now over 30 hours later we remain capped! Sophia slept through the night capped and stating 98%. Speechless...


This year, this year may be our year. I've grown weary and yet hopeful for THE YEAR. The year her trach comes out. I have never felt so close to a goal as we have now. We were dismissed from the hospital with the cap. We have doctors orders to cap all day and uncap at night while sleeping. She will remained capped for a few months and we will then revisit with a possible decannulation sleep study. She has a pretty significant leak around the trach site. The leak is around the trach at the actual opening in her skin. The cap goes over the trach and forced her to breathe through her nose and mouth. Basically the leak means she's cheating a little. We hope the leak closes around the smaller trach on its own so we can get a 100% accurate true understanding of her successes! My fear is she is relying on the trach leak too much or that it is interfering with her secretion control. We will just have to wait and see. I hate those kind of games. Ideally the doctors said if she can be capped during a cold we can take the trach out. Now I am certainly not inviting you germ breeders into my home but we will let nature take its course. Sophia is becoming a nose-breather! What a treasure most people take for granted- breathing. I am so very proud of Sophia.  She remains the most tenacious, determined  and bravest little girl I have ever had the pleasure to know! Lucky for me- I get to keep her! Here is to this year!! This year! Pray for this year! For growth, strength, health, luck, wisdom. Pray for a girl, this year!! Sophia has always breathed life into others maybe it's her turn to breathe life as it was intended- simply and beautifully!

Go Sophia Go!!!