Melissa has said so much of the important things below. Right now it can be one minute at a time, one hour at a time, one day at a time. I didn't realize your family was in the Navy. I'm sure moving right away really does make it hard, I found the loss of things I had no control of very hard. I am a control freak and that was soooo hard for me. When my son was diagnosed my friends still laugh at the story of how I immediately went out and go a handicapped sticker for the car, only because it was the only thing I could think of that I could control. I could find forms, I could get them filled out and I could go someplace and DO something. This is a mourning process, you have lost something here, you have lost the dreams you had for your son so treat it as such and know the stages of grief. You will move on and turn that into hope and fight. I know there are many PPMD families in your area. It really does help to connect with local families going through this. Hang in there, things will get better.
Wyatt's CK was 29000 the first time it was checked. It fluctuated, but the last check it was back up again. (lowest it ever went was 17000). I felt like my heart was pulled out of my chest. In our situation, the genetics doctor said that DMD just didn't fit, they were looking for other things, so when they said it was DMD it was like a building fell on me. My husband and I just stared at each other.
It's been 9 months and I still wonder how I'm going to make it through. I have good days and then not so good days. Sometime I "forget" and then I feel guilty when I "remember." Wyatt is only 18 months so it's so hard to believe it, when I look at him, other than he doesn't walk yet and he's tiny, he looks like every other baby. There are no symptoms that we can see. That's the hardest part for me.
The most difficult moment I had was the day after we found out, my son Brady was turning 4. My niece was about 5 months at the time and I couldn't hold her. I looked at her and realized all the things she would do (obviously I'm thankful she's perfect) that Wyatt would never do. And it broke my heart.
I wonder every day WHY this is happening to my baby and as I've researched DMD, I've learned that it's happening to so many other babies too. It's just plain unfair.
I cry alot. But way back at the beginning around 2 or 3 weeks after diagnosis I looked at him in the face, his little 11 month old (at the time) chubby face and made him a promise. I told him "I will still cry, but this is the last time YOU will see me cry!" I promised him and myself that I would take those tears, anger, frustration and FIGHT for him. That's how I keep myself from crying. So we found him a great group of doctors, nurses, etc. and started our journey. We've learned alot in 9 months, but I know I have so much more to learn. I think helping my 4 older kids understand what is happening and what will happen down the road (to an extent) is what keeps me from losing my mind.
Keep optimistic. The day of my sons diagnosis I met an amazing genetics counselor. She told me that in the last 5 years more as been done in DMD research then in the last 50 years. Find out what Trey's mutation is, then you can find out what treatments are being worked on for him. There are so many possiblities. But I know how you're feeling, I want to help Wyatt now. I'm not a let's WAIT AND SEE kind of person, I want treatments now, but I promise you, they are coming.
I've met some amazing women on this site, who have become so important to me. They are the ones I talk to when I'm feeling down, because they TRULY understand me. I hope you can make "good friends" on this site that will be there for you. I want you to know that I will be here whenever you need to talk.
For the last few days, I keep "checking up" on you. Wondering how you are doing, how Trey is doing. My son was diagnosed about 9 months ago, now, and it does get a little bit more managable. I don't think it will ever get easier. But, I still get sick to my stomach thinking about how much our baby is going to have to face. I have met some wonderful women on this site, who have been a great comfort to me. God Bless you. I will be praying for your family.
I've just been thinking alot about you today for some reason. Wondering how your appointments went this week. This is such a hard time and I would never wish this on anyone. I can't imagine having to go through this pregnant. My son was actually diagnosed on my daughters 1st birthday, so we took our news and had a party in the same day. Please know you are all in my prayers.
Just wanted to let you know you are in our thoughts and prayers too during this time. Your posting also reminded us of our agonizing time waiting for a definitive diagnosis. Our son Charles (now 7) was diagnosed at 3 and a half after a muscle biopsy and genetic testing. I would agree with the other family to wait to do the biopsy if you can, to see if the genetic testing can tell you what you need to know. It would be one less stressor for you and your family to deal with.
Our son also had a mixture of "symptoms." He walked late (16 months) and did not crawl until 2, but for the most part met most of his early milestones and was healthy. I finally had a PT evaluate him at age 3 when he could not do a 2 foot jump and was having difficulty keeping up with same age playmates. She did not suspect DMD at the time because he did not display a full gowers. I was told by many at that time that I was overly concerned because he was my first child.
It wasn't until we had him evaluated for another medical problem at the Mayo Clinic (not related to DMD) that we found out what was actually going on. Again high CPK (17,000). We had no prior family history of DMD either.
Initially the diagnosis was devastating to us, but there was also some relief in finally knowing what we were facing. After connecting with many wonderful people (including many from PPMD) we were able to form a plan to go forward again and try to live each day the best we can with as much joy as possible. The time we have with our children is a precious gift no matter what.