I'm feeling sorry for myself today. I need to get out of my funk because I just received good news the other day. Max doesn't have Myotonic Dystrophy. Thank goodness!!! I was really worried about it. I spoke with the nurse for Max's neurologist Dr Norman on Monday. She says that we have run out of tests that are reasonable. We just have to wait until our next appointment on October 15th to discuss any more options. There is some painful testing that can be done to check his muscles and some more genetic testing. There really are not any other tests right now unless Max starts to show other symptoms though. It has been mentioned that we may need to take him somewhere like Johns Hopkins, Boston Children's or Baylor where they are specializing in something having to do with overall muscle weakness. Even though I received great news Monday now that the happiness and excitement has died down. I have started to worry again. Why is my soon not "typical?" Why is he not walking or talking? It may seem like I am being negative but I'm not. I want to know what I can do to help my son. I want him to be able to do things that other 2 year olds are doing. I want to be able to talk to him and understand him even if no one else can. Jeff and I are so blessed. We tried to get pregnant with Max for about 2 1/2 years and finally it happened when we stopped trying. Max is the best thing that has ever happened to me and the best thing I will ever be a part of. I just wish I had some answers. Now enough of the pity party. I'm ready to go home and hug my boys and live life to the fullest. Because Max is only this age once and I cant rewind it. I love him for who he is and the joy he brings to Jeff and I. And thank you so much to our friends and family who have been supporting us this entire time. You mean the world to us!!! Also a note to a new follower Laci. Your story inspires me and helps put things into perspective that things could be worse and I have everything to be thankful for. Thank you for reminding me of that. Here is Laci's blog if any of you are intested in seeing this amazing family.
You said it all, sister! Here's to focusing on the happiness in life and the blessings that our little boys bring us every single day. They may be different, but they’re blessings nonetheless. Max is a gem and I love him for his sweet, gentle charm. We will get there and find the answers we need, I know it. Your strength and patience inspires me every single day. Thank you for showing me how to appreciate life. I love you!
ReplyDeleteThanks for sharing my blog! I wanted to ask first of all if you had taught Max any sign language? We teach Betsy signs as she is speech delayed and she picks it up very quickly. She knows about 30 signs and it has really helped reduce her frustration but also lets us communicate with her in ways other than speaking. If you need tips on this I would be glad to help you!
ReplyDeleteThat being said, this was a great post. I do know it is tough to stay positive when things seem troubling or sometimes we don't have the answers right away. I get in a funk all the time and even though I have been through a lot, I do the same thing as you and think there are people who have it worse. I count my blessings every single day even though it may seem tough for people to see through the negative and focus on the positive.
Max is a true blessing to your family! And from the pictures looks like a real charmer! I'm glad to be following his journey!
I Would love some pointers on sign language. Max has a physical and speech therapist and we have been working hard. Because of Max's muscle tone problem sign language isn't going great. We have been doing a form of picture therapy that seems to be working okay. I can FB you if that would be easier.
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