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This week has sucked. My daughter had a stomach flu from last Thursday through yesterday. When she gets sick she gets very bossy and pitiful. She is so little for her age anyway, only 34 lbs at 5 years and in that span she lost 4 lbs due to not eating. She is eating now but her appetite has shrunk. Last night she only ate half a piece of pizza.
We are pretty sure, now, that Charlie has EDS. It's breaking my heart and I've broken down more than a few times over it. Its all my fault. It's genetic and I passed the gene to him. They've considered him for EDS since he was born. They think its the cause of his apnea, and his low muscle tone, and his delayed milestones. It may also explain his blood pooling in his arm. Three times now, twice in just the past week, we've thought his arm may be dislocated. He will be doing something simple, like walking and holding our hands, and suddenly he's crying in pain. When we move his arm he whimpers. He normally goes into a deep long sleep after this - which is normal in EDS kids who have experienced trauma - and even in his sleep he cries out in pain if his arm is moved. A few hours later he'll be fine. We haven't taken him to the ER because if it IS dislocated and they attempt to pop it back in and he does have EDS it can hurt him worse. Yesterday I was so upset I nearly took him to the ER after a few hours but as we were loading the kids up in the car we heard a pop and he was fine. He has an appt next week to get the ball rolling on a diagnosis, but it may take YEARS before he's diagnosed. They tend to not even test for EDS until the age of 5, and kids younger than that who show definite signs of having it tend to have a severe case. So far he is our second child who we think may have it. Anthony's seems to affect his skin more than his joints so thats not too bad.
Yesterday I began feeling sick so I told Chris I wasn't making dinner. His solution to this was to go get Little Ceasers for the kids. Anthony really wanted to go so Chris told him he could come. I heard them get back but I was dealing with a major David temper tantrum and then I heard Anthony screaming outside. I thought he was just having one of his Asperger meltdowns and Chris had spoken harshly to him. Anthony comes inside and tells me he has to go to the emergency room because Chris had slammed the car door on his hand. I went to go look at it and his pinkie was bent at a very weird angle. The door had caught him on that knuckle on your hand, not your finger. Chris came in and I told him that Anthony's finger had to be broken, it was bent funny, and that he had to go in. Chris felt awful so he took him instead of me. Anthony stopped crying on the way over there, and I got to work making homemade apple muffins (even though I didn't want to cook, I had to do something to keep my mind off of it). The doctor said he chipped the bone right above his growth plate. He said the issue with where it chipped is it has to be cleanly broken through or else it can cause mobility issues. So we have to take him to an orthopedic surgeon and get it broken/straightened out. They can't do anything with it until then, so it's just buddy taped. He's staying home from school today until he's in less pain.
Poor David has kind of been neglected this week, which is causing him to throw massive temper tantrums and to wake up numerous times a night. I can't wait for the weekend.
And if you read all that, you are a saint!
~Beth~ Wife to my Airman Chris, and mommy to: Anthony Nathaniel (8/31/04), Anastasia Fae (8/01/06), Baby C (lost on 10/12/07), David Cillian (7/31/08), Charles George (4/29/10), and Alan Christopher (2/22/12)
Wow. What a bed week. I'm sorry you're having to deal with all of that!! I hope Anastasia is feeling much better. I saw your post on FB about her being a tough cookie - too cute!! (And yes, slightly pathetic ) I'm so sorry you're having to deal with all of these things with Charlie, too. Try hard not to feel guilty, but I do understand your feelings. With you as his mom he's already got a great advocate for getting the help he'll need. Please KUP on his appointments as they come up! And poor Anthony!! Kaija slammed her own finger in the car door and I wanted to die, I can't imagine having done it myself. Hopefully his surgery goes well, KUP on that as well. And give David some extra hugs and kisses every chance you get!
Oh wow. It sounds like this week has just been crazy for you. I wish there was some way I could help you out. I hope that your dd starts feeling better, and that you can get Anthony into the ortho soon. It sounds like you are being very proactive with Charlie, and I hope that it doesn't take years for them to give you some answers. Don't blame yourself because it isn't like you talked to your genes and said "Hey you. Yea you EDS gene. Why don't you let me pass you on to my kid." I know it is hard not to blame yourself, but you don't have any control over your genes. You didn't choose to have EDS, and you didn't choose to give it to your kids. It isn't your fault. I hope that things calm down for you, and that you get the time to relax soon. *Hugs*
OMGosh! What a week! There has to be a calm after the storm...hopefully you'll have a wonderfully relaxing weekend so you can rest up and get some energy back....that sounds exhausting! KUP on Charlie and Anthony, poor babies!
That is a horrible week. You're a strong and brave woman. I've said it before, and I'll say it again. Your kids are lucky to have you as a mom. Especially Charlie. Even if he does have EDS, you'll be there every little step of the way and with understanding compassion too.
I hope this weekend brightens up and that next week is full of glorious things. Or at least simple things that make you happy.
Alisha, mom to:
Marcus - Jan '09
Lauren - March '10
Caroline - November '12