It's been...

It's been 6 crazy, amazing, heart-wrenching, hopefully miraculous emotionally splendid, beautiful months. When I look back to December and all the days we spent in the hospital, I can not for the life of me ever stop my eyes from swelling with tears, I can't stop the lump in my throat or the flutter in my heart. When I look back on where Sophia was at birth and where she was after each surgery and to where she is now, I can't stop the smile from spreading to each corner of my mouth and I cannot stop thanking the Lord for the miracle I get to see in her daily. This past 6 months has been a whirl wind of emotional ups and downs. The downs are low and the ups well nothing gets better than the UPS. It hard to think that for half of 2012 we have been in the hospital and in and out of doctors visits. However, the optimist in me is anxious to see what the second half of 2012 has in store for my family. 

It's been a few blurry, hurried, busy, exciting, longing couple of weeks. I feel like I haven't even had time to sit and breathe the last couple of weeks. I know my husband feels the same. He works his butt off for his girls. Since coming back from the hospital, we have been playing catch up with our time and days. We have had a few more doctors visits. People (professionals) dropping by the house to check on Sophia and her equipment. Reordering medical supplies and medicines. Catching up on the usual day to days. I was so afraid that being back in the hospital for a week was going to set Sophia back in her development. To my surprise, it has had the opposite affect of Sophie. I swear in the past week or two, she has learned to hold her head up, steady herself better and...wait for it...she can sit independently for a few minutes at a time now. This is HUGE people. What an accomplishment. I can't wait to see our physical therapist mouth hit the floor Tuesday when she comes back from vacation. She is going to be soooo HAPPY. We have been working hard:) GAH I just love her. I get so excited for her and clapping and dance and she just smiles at me. She knows she doing good to. I have even seen huge differences in her personality. She is a character. She is nonverbal but her facial expression speak volumes. The other night she was laughing and just giddy. She had the whole room rolling in laughter. She really is the best baby. 

It's been a expected, unwanted, disappointing, knowing, wondering, needing more couple of days. We had our appointment with Speech Thursday to discuss the paci muir valve. What a loong night that ended up being. We took the last appointment of the day so we could get in a few months earlier. I was eager for the appointment. Hopeful for the appointment. Not surprised by the appointment. Sometime you want something so bad and in the back of your mind you know your wanting too much. We were the lasts one in and the lady came in to discuss what the valve does and how it works. The way it works is it allows her to breathe in through her trach but NOT exhale through it. She then is forced to move air past her vocal cords and out her nose or mouth. This is a completely new way to breathe for her. Considering she has now learned to breathe solely through the trach. When we tried it the first time, she looked panicked like she couldn't breathe and the shot a bunch of snot out of her nose. We took the valve off and then suctioned her clean. Then to add to things, our suction machine broke. As you all may know, I suction Sophia all day everyday. Its all I get done. We could not do anything further until we had suction. Luckily, we were in a doctors office however we can not drive home without suction in the car. So that put a halt on our visit. I had to call the company to replace the machine but they couldn't get to us for 5-6 hours. So thankfully, my sister came to the rescue. Kelsey is always clutch. She drove to Riley to bring our backup suction from home. The company came to our house the next day to replace the broken machine. Once we had the suction sorted out, we attempted the valve again. This time she didn't seem as panicked and was releasing some air through her nose, but not enough. All of a sound she exhaled a deep breath and shot the valve straight off her trach and across the room. The speech therapist said at this time she doesn't feel Sophia is ready for the valve and we would discuss it more at our next pulmonary visit. Ugh. I had a feeling. I didn't except her to start making sound right away, but I was hopefully hopeful. It is a little disappointing and heartaching to know we have to continue to wait. I completely understand the need to timing and safety but I still have questions. I guess those will be answered at our next visit. Thank goodness that is next week. This month we officially, have our vision and hearing screens as well. We also will be visiting cardiology this month to follow up on her heart issues. 

(God, to hear that Laugh...)

It's been exhausting, It's been up-lifting, it's been surprising and its been expected. It's been wonderful, its been loving, its been joyous.  Its been a PROUD few days. I have to say all in all these past couple of weeks/days have been surprisingly great. A few steps forward..wait many steps forward and a few hold ups for the moment.