I work as an appeals nurse for a small insurance company that is also a Medicare administrator. I love my job not just for the paycheck but also for the distraction it gives me away from real life sometimes.
About my family:
We have 2 kids. Xavier is 11 and was diagnosed with DMD (deletion of exons 48-52) when he was just 4 years old. Erica is 8 years old. I am a carrier with the same deletion. My husband Frank and I live in MN. We go to Gillette Childrens hospital/MDA clinic. We believe in raising our kids just like everyone else with the belief that Xavier will grow up and go to college and be expected to be a contributing member to society and know how to function that way. Life consists of love, fun, school, and little sisters to bug you!
Name(s) of child(ren)/individual(s) with Duchenne:
Hi . Thanks For the shoutout. You know this whole thing started with me earlier in the week. Kristi has been ok so far. Me and the boys have been fighting it for days. Kristi is bracing herself tonight she says. Because she has been feeling something coming on. I hope she does not come down with it because we have not had a night go bye without someone up hurling and feverish. Hope you all are doing well. And tell the X man keaton and christian say they like his name.
Hi Jennifer! You son is so cute!!!! Great pics of him! I tried to find you on fb, but did not want to add the wrong person :) Did you have a maiden name in your fb name? If not you can find me-the profile pic is of our one year old in a cow suit :) Thanks again for your replies!
Hi Jennifer! I see you have Dr.Day as your neurologist. We started going to him since January. I have a son named Luke who just turned 8 who also has DMD. You have beautiful children. Looks like Xavier likes Legos. Luke just went on his make a wish trip to Legoland in California. We all had a great time. You may want to check it out some day. Do you also go to Shriners Hospital? We go there next week for the first time for nocturnal braces. Would love to chat with you sometime. I think it would be very helpful. Take Care and God Bless!!!!
Hi Jennifer. I was the one who was at camp last summer an was interested in your experience with hGh. My sons were tested and are both deficient in the hormone and our medication is due to arrive today. Now I am second guessing its use and am scared to death. Any advice or insight you can give me would be terrific.
Thank you for the warm welcome Jennifer. We live just south of St. Louis MO, Brandon is our only child, and was diagnosed at age 4. He will be 13 next month. Thank you for the comment on my profile photo.
I have 3 bio..the older ones. Bran is21, Bry is 19 and Bri is 17. Then we adopted our 3 foster children November 2008. We had them since 2006. They are Jasper 8, Christian 6 (DMD) and McKenzie 5. In the process of adopting Brayden who is 9 mos.(born drug exposed). My kids' foster care worker loved coming over for her monthly visits because of the homey atmosphere here (I think it really was the candy jar). Christian's diagnosis does have me considering whether to continue fostering or not. I do love it so to give it up would be a very difficult decision to make. Not ready to go there yet. Doing my internet searches and this forum have provided me some useful info but still feel like we don't have a real plan of attack yet...I know I am doing all I can right now and more will come once the genetic test comes back. The thing I realize most is that this child was placed with me for a reason...God knew his plan. His birth fmom never would have found it and could not have handled it..it would have been one more excuse to use drugs. So everyday I continue to be thankful and live in the day. You can pass my info to your mom...my email is firstname.lastname@example.org.
Jennifer, we are doing SO well...had our beautiful baby girl (Cassidy Hope) on October 13th and she has just been an angel to our family...Trey LOVES being a big brother!!! We also moved that weekend from a trilevel home to a ranch style home, and the difference we have seen in Trey has been nothing short of a miracle...kiddo doesn't walk on his toes anymore, never complains that his legs are tired, has SO much more energy and his personality has really calmed down as we were dealing I believe, with some fustration issues on his part, yet he wasn't quite able to 'voice' what he was feeling...AMAZING! School is going very well for Trey, once we got past that mean person, his teachers are amazing and he is definitely thriving in the environment, thank goodness! Thanks again for checking in, how are you and your family doing?
Jennifer, I am so blessed to have you and so sorry I didn't get back to you right away...I had to take a break from all of this. Everything right now seems to be moving way to fast...it's like our perfect little world we were living in has flipped upside down. The Navy doesn't mess around with stuff like this and are already planning us a move into a 'handicap' home, and the doctor appointments, and therapy appointments, and IEP now (even though Trey doesn't start school until January), it all seems completely overwhelming. I sit here and think should it be going this fast...is it completely necessary, and although I want to deny it, I know it is, but reality is just too much right now. I keep having to repeat to myself that my little munch knows no different, but my heart knows, and it hurts, and I guess if I have to cave up for a little while without him knowing then it is my right to do so... One day at a time, right...
Just wondering if you and Frank are planning on attending the Neuromuscular Support Group gathering this Saturday at Shriners.
We'll be there with Jack. Normally he'd be a bit shy about going to a social outing like this without his big sister, but in this case swimming pool trumps shyness!
Hope to see you there!
Tapio & Anneke
Thank you Jennifer...tis definitely not an easy time for us...Trey's CK recheck came back higher then before now at 32000. We saw the neurologist (on his birthday yesterday) and they are 90% positive that he does have the Duchenne's...I am slowly losing it and trying to hold it together all the same... Losing it to the point where I 'bumped' a guy on a bike today with my car (he came out of nowhere and wasn't on the sidewalk but still) after picking up info from the doc...god bless his soul he was fine and told me not to worry about it...thankfully there are still good people in this world... They took blood for the DNA and we will have those results in about a month, I don't know how you guys do it, I don't know how I am going to do it...I am so scared and heartbroken... How long did it take for you to pick up the pieces, digest the info and put your lives back together where it's not so painful?