Good Things

I find that often when I post I might come off as the 'glass is half empty' kind of person. I'd like to think otherwise. So, I wanted to reflect on the good things. 

I am so lucky to have my little Mia. She is the most adorable (yes of course I am partial), hard working and determined little girl. All that packed into her little 18 pound body. She has taught me more in the last 19 months than I ever imagined I could learn. I love her so much. She amazes me every single day! When my mom's best friend (whom I call Auntie Maryann) got the birth announcement she said Mia had "an all knowing look" to her. Well, little did she know how right she was on that. We do now refer to Mia as the all knowing baby, well now it's the all knowing one, since she isn't a baby anymore (she's 19 months today)!!

Mia's stubborn personality and determination along with a lot of prayers has gotten her to where she is at today. SHE WAVED TO ME THIS MORNING! I went into her room and as always I said in my energetic voice 'HI MIA' and I walked to her crib. She always gets excited and wild and she looked at me and WAVED! She doesn't wave, sometimes with a lot of prodding and holding of her arm she will wave, but that isn't very often. I was so happy. She made my day! Yesterday I swore she spoke to me and said OUTFIT. Now, I can't be sure that is what she said, but the WAVE was really a WAVE!

Mia came home from the NICU when she was 1 month old. She came home with the NG tube. The doctors originally wanted to give her a G-tube, but nurse Vicki got her to take some feeds from the bottle, so they decided to send her home with the NG tube to make sure she was taking in all of the milk they wanted her to get at each feeding. When we got home the feeding tube was an issue of stress. We were always worried she would pull it out and we hated having to put it back in. DH and I also thought that she would never really learn how to know how much to eat if we would do a bottle feed and then put the rest into her NG tube, we thought that was too confusing for her. We decided to take the tube out and I would just offer the bottle even more than before. She was getting all breast milk as I was pumping like a mad woman! A short time after taking the feeding tube out my normally content, calm, quiet baby was inconsolable. She was flipping out. I was panicking because she's never been like this before. I walked her around, burped her, tried to give her the bottle, nothing was working. I just got this feeling that she wanted the 'boob', I know it sounds crazy. I had tried 2 times in the NICU with no success. I figured my hopes of breastfeeding were gone. Ok, so I have this screaming red in the face baby and I whip the boob out and guess what?! That is what she wanted! Holy mama, what the heck?! I yelled to DH OMG she latched ON! He comes running over trying to get pillows and make it all comfortable for us. So the first month of bf was very tough, she took at least an hour to latch on, my neck was killing me, but it was all worth it. I couldn't believe it, everything you read says if they take a bottle first they won't BF, not my daughter! I nursed her until right before her first birthday, at that point the all knowing one weaned me! I wasn't ready to quit but she was!

I bought a book called Teaching Motor Skills to Children with Cerebral Palsy and Similar Movement Disorders (highly recommended). This book has been very informative. Chapter 9 is Guarding Against Falls. In this chapter it talks about the parachute response and how children who fail to develop this response do not progress into independent walking. It says that this response can be taught and once it is learned it doesn't go away. It has several exercises to do to achieve this response. It starts out with easier beginning exercises and then progresses into more complex exercises. In late December I was at my parents house (stayed for 2 months during the holidays) and Mia would be on the floor playing and she would get up on her knees and put her arms up in the air and reach up high. Then she would let herself go and she would fall forward and catch herself in the crawling position. Well, we thought it was adorable of course and since she is hypotonic we thought it would be good strengthening. We never knew why she was doing it. I get to chapter 9 in this book at this is the more complex exercise in learning the parachute reflex, the exercise is called touchdown from tall knee. The exercise would call for the parent (or PT) to guide the child up into tall knees and drop down into the quad position. OMG! My kid is amazing! She taught herself the reflex! 

Of course there are more reasons we refer to her as the all knowing one, but those are the two big ones! I know that things with Mia could have been so different. I know that by the grace of God she was able to be resuscitated. I know that God has continued to answer prayers for her and He will continue to answer our prayers! She is globally delayed but she is always improving!!