Head and Shoulders and Knees and Toes

And EYES, HEART, and LUNGS too. We have had a busy month already. We have already had 3 appointments the first week alone. I am very thrilled to announce that after a long and disappointing appointment last week, we received some very much needed and amazing new changes in Sophia's care. Last week we had two appointments at Riley, one for her eyes and one for her lungs. Her eye appointment was as expected. The doctors confirmed she can see (how exactly will not be known until she is able to tell us herself). They said she had good tracking and she didn't see a need for glasses at this time. They dilated her eyes to see the colobomas again. She has a larger one of the back of her right eye in the outter (nowhere too important) space. On the left eye, she has a small coloboma the nerve and the nerve looks enlarged.  They question (fear) there might be a coloboma inside the nerve. Okay, not the best news, but we already new most of that. What I am choosing to hang onto is that fact she is SEEING! Doctor confirmed. Mommy already knew that. Also, I am taking it as a good sign she doesn't need glasses yet and that her eyes are  focusing and tracking as they should. I will take it! The most exciting news however came from our lung doctor. She walked in saying she wanted to change this and this medicine and change that setting on the vent and to schedule a sleep study for the month. I was like okay good good good. Then I asked her about Sophia's oxygen needs. She said to decrease as tolerated. I said I didn't think she needed it because we hadn't had any oxygen needs previously and she said take it all away as tolerated. I said ok. :) Then I asked her about the paci muir valve again. I told her I didn't understand how Sophia was suppose to learn to breathe a new way if we weren't able to try it at home.  She said, well I won't quote her for sake of well for the sake of others, that I more or less stated she thinks I am very INTELLIGENT and capable and she agreed with me 100%. She said I will right you orders to try the valve at home under monitors and to try it as Sophia tolerates. SCORE for the parent with the brains. haha. So when the supplies come in, I will be able to work with her on the paci muir valve. I am eager, but cautious. I know there are risks and the rewards may take time but I am just so thrilled to be able to let her try. You never know until you TRY. And, if you haven't caught on already. NO OXYGEN DURING THE DAY MEANS MORE FREEDOM. We now only have to put her on an HME ( a small piece over her trach ) when we travel about. We can use it at home too. Sometimes, we may hook her up to humidity through a trach collar as needed for flow. I can now carry her around my whole house as I want. We are no longer restricted by time for worry of the oxygen running out. I no longer have to carry a 15lb battery and vent and hoses or oxygen tubes with me at all time. Granted, I still have a suction machine, emergency O2, emergency kit, and monitor BUT I'll take it. Those things I don't foresee ever being without. What a VICTORY! Sophia you are a rock star. Mommy and Daddy knew you were ready for the next step and we are so happy to be walking this path with you.