2013: The hardest, most painful, trying and sleepless year of my life; yet also the most beautiful, miraculous, happiest, most triumphant year of my life. At this exact time of year last year, I had absolutely no idea what I had coming for me. I am incredibly grateful for the beautiful heartbreaks that I have been given. They have made me the person that I am today and I could not be more grateful.
Some updates:
Londyn is no longer wearing her helmet! Its a good thing and a not so good thing. Her head was not growing anymore so her neuro-plastic-surgeon told us to not have her wear it anymore. The helmet did improve the shape of her head and we are very happy with that, it just didn't correct as much as we were hoping. We will be meeting with the plastic surgeon later on this month to discuss further options.
I think the last time that I posted Londyn had an NG tube (feeding tube in her nose). On November 8th Londyn had surgery to have a G tube placed (a feeding tube surgically placed directly into her stomach). Her doctors were sure that this would fix all of her problems. She would gain the weight she needed, she would start eating all of her food by mouth, and she would stop throwing up. Sounds fabulous right?? It did to us too. However, that is not at all what happened. Londyn now throws up on average 3 times a day. Sometimes more, sometimes less. She refuses to eat anything by mouth. Her weight gain is a hit and miss (probably because she is throwing up). The most frustrating thing about it is nobody knows why. Her GI doctors basically said they have done all they can do for her and we are on our own. We now have a feeding therapist that comes in and works with Londyn on trying to get her to allow us to put things in her mouth. She has said that as long as Londyn keeps throwing up everyday she will never eat by mouth. I am waiting to get her into a different GI doctor who supposedly has a different approach to things than her other doctors. If that doesn't go well we will be looking into taking Londyn to a world renowned doctor in either Colorado or Arizona. I am not willing to give up. There is clearly something wrong and we need to figure out what the problem is not just shake our shoulders and say oh well. I feel so horrible for Londyn. I think throwing up is the worst thing ever, and to throw up every single day is just miserable for all of us.
Londyn still has therapists that come to our house about 5 times a week. They are amazing and I am so thankful to have them. About a month ago I asked them if it would be possible to get Londyn sitting on her own before her 1st birthday. Both of them said that probably wouldn't be possible but that they would help me do the things I needed to do in order to get her closer to sitting. I'm not sure if you all caught this on facebook, but on December 20, Londyn sat up on her own for the very first time for about 10 seconds!! It was an absolute miracle. I sat and cried as I saw the picture and thought about the conversations I had had not long before. We are so blessed. Over the last two weeks I have seen tremendous improvements. Londyn is getting so strong. She has amazing head control. Her back is getting stronger. She loves to sit in her high chair and play with her toys. She continues to beat the odds placed on her every single day. This girl will not be told how her life is going to play out.
Something major that happened since my last post: I took Londyn to see a geneticist. Some doctors believed that her stroke could have been caused by something genetic. This was very nerve wracking and upsetting to us. It literally kept me awake for many many nights. When I took her to see the doctor he thought that all of her symptoms could be explained by the stroke. He did however want us to test her for two different conditions. We were only able to do one of the tests (our insurance wanted us to pay $4000 for the other test. OUTRAGEOUS.) After researching the condition that we were testing her for I was completely sick. She fell into a lot of the categories and it sounded a lot like Londyn. If she were to have this condition, there would be a 25% chance that our other children would have this same condition. I constantly felt anxious. It was awful. I couldn't sleep at night. After waiting for an incredibly long 5 weeks we finally received the results. Londyn DOES NOT have that condition!!!!!! I cannot even begin to tell you the relief that I felt when I finally got the results. I was finally able to sleep once again.
Londyn continues to be the happiest baby I have ever known. She is constantly smiling, giggling, and entertaining herself. She is absolutely adorable. She now has two bottom teeth (which I think are just about the cutest things I have ever seen). She loves music and she loves to watch my dancers dance (which absolutely thrills me.) Her favorite song is "What Does the Fox Say?" I know... shoot me now. But it is the cutest thing ever. You turn that song on and she just starts dancing. She has developed this absolute cutest personality EVER. I am so madly in love with her. Each day I am reminded how lucky I am to have her. She is amazing and we are so blessed.
Thank you all for your love and support. We had an incredible Christmas thanks to some amazing friends of mine. We are so thankful to all of you. Please keep praying for Londyn. I know that she is doing as well as she is because so many people believe in her and support and love her. I love you all!!
Til next time.
