Fashion, I'm glad to see an update from you! I thought about you and your daughter a few days ago
I'm sorry that the diagnosis was confirmed but I am happy that you have found a great, trustworthy doctor! I hope you and your husband can get the support you need. How is he doing, by the way?
There is comfort in closure but I am not sure how much more I can take. Her X-ray came back today that she also has hip dysplasia not related to her hihypertrophy but related to a shallow hip socket. We see an orthopedic specialist in the next week or so to see what needs to be done for that. I don't think I can take much more. I found myself in her room tonight watching her sleep in her crib and I just started to weep. Aside from losing a child, I cannot imagine anything worse than a diagnosis that holds risk such as childhood cancers. I feel like I am in a nightmare that just keeps changing and evolving. Hubby is handling everything fine on the outside but still won't talk about it other than it is what it is. I don't resent him as much as I did before....I just want to get off of the roller coaster and I don't know how. Sorry for such a ramble, I just needed an outlet at the moment.
Fashion, I have been thinking of you and your DD as well. I am so sorry that something else has come up to add to your worries. I hope that the orthopedic surgeon has good news for you.
As far as the diagnosis, I wish you'd gotten different news from the second doctor, but I'm so glad you are in good hands with the geneticist. I did a quick search on hemihypertrophy and cancer risk, and while I know it's scary to have any elevated risk, it looks like it's about 5-6%. So your daughter has at least a 94% chance of being cancer-free, which is a great statistic. And in another study, kids who were screened as recommended had NO late-stage cancers found. Again, I know it's incredibly hard not to focus on the possibility of the bad outcomes, but your chances are so so good that everything will be just fine. We will all be thinking of you and rooting that this is the case. Please try to remember that as of right now your DD is fine and well and happy.
In another year or two, I think you will feel much more comfortable, but you need some time to adjust to this information and get your resources in place. I have an autoimmune issue, and the first rheumatologist I saw when I moved to CA emphasized my 40x increased risk of lymphoma (about 5% of people with my syndrome get it), etc. etc. I was completely freaked out for a little while, and now I almost never think about it.
I hope the hospital support people are great and can give you some good resources to draw on. Thinking of you.
fashion, i'm really sorry to hear that your DD's diagnosis was confirmed. I too was really hoping that the other doctor was wrong.
There really isn't anything I can say to make you feel better, but I am thinking of you and your DD and I am sure you will get through this. One day at a time and know that you are stronger than you think you are. Don't worry about rambling - please ramble on if it makes you feel even a tiny bit better.
Fashion, how are you doing? Have you found some support? Thinking of you and your little one.
I started seeing a counselor about two weeks ago to help me sort through my feelings and to help me release the anger I have towards DH. That ha been helping. I started to read a book about how to manage a marriage when you have a special needs child ad although there were some great tips in there, it also helped to give me perspective that many people have it a lot worse than I. I plan on joining "mothers united moral support". It is an international support group for many types of diseases. With membership, they will match you up with families that have the same diseases your child has so that you have someone to talk to. One day at a time, things are getting easier to accept. I won't say that I am not still angry/sad but before it was crippling and I couldn't talk about it without crying. That is not the case now. Thank you for checking in on me!
Some of you may have been following my previous post about my daughter's facial asymetry. Well, she has been diagnosed w hemihypertrophy. This is a genetic growth disorder that causes certain parts of the body to grow at a faster than normal rate. This results in certain body parts being larger than others but another concern is cancer. Because the cells grow at an abnormally faster rate, there is an increase in cancer in these children from infancy to approx. age 7. Because of this, DD will need to have blood tests every 6 weeks from now (6 months old) until age 7. Obviously this is the first concern but other concerns are her appearance. Will she be mocked when she enters school? Will she have a normal life? Will she have a normal high school experiene (going to prom, dating) or will she be left on the outskirts?
I am having the hardest time dealing w/ this. Worry consumes my thoughts 24/7. This diagnosis is the first thing I think of when I wake and the last thing I think about when I go to sleep. I try not to but I can't help but ask myself over and over again why my child.
I used to be a focused and successful business woman and I find myself dropping the ball for the silliest of things that I totally should have caught. I have developed into someone who is quick tempered and has zero patience.
I have been looking to DH for support and I get zero response. DH shuts down, won't talk about it, tells me things like, "why bother worrying, you can't change it". He won't just grieve with me, listen to me, support me, level with me. Nothing. He pretends it isn't happening. I have yelled, screamed, pleaded, cried, rationalized...everything with him to no avail.
I have never felt so lonely, lost and confused. I look at myself in the mirror and barely recognize myself. I look defeated, exhausted and aged beyond my years.
I have looked for a hemihypertrophy support group in my area and there isn't one. Hemi is a rare disorder so I realize that others on this forum may not have a child w/ hemi but I would assume that others w/ an ill child or a special needs child can relate....I just need someone to talk to that understands.
Hi Fashion. My eyes welled up reading your story. I'm so sorry. I'm a mother of four and while I don't have a child with special needs I can still relate to your feelings as a mom. Moms worry about EVERYTHING when it comes to their children. I believe that you and your husband would benefit from counseling. If he won't go then you go. You need help trying to deal with all of your emotions and life changes. A friend of mine has a daughter with some mental health issues and took her to a child psychiatrist. Well, my friend ended up going to the same doctor for herself and it has been a blessing. The psychiatrist is now seeing them both and it's been so beneficial seeing a doctor who can meet both of their needs. So, it might not hurt to contact doctors or therapists whom specializes in this area that will also see you. I'm praying for you and your family.
I have a 8yo Son who was diagnosed at 2 with Autisim
My oldest DS 9 also has AdhD. Its been a struggle none the less. Ive kept bery and still continue to keep a close eye on both my DD 6 and 16months
Im isially the one who cares and is more involved then my DH.
Sometimes its really hard and other times when i try to involve him i wish ne was t since he tends to make things a bigger deal then what they are and it get embarresing and i Am left to clean up the mess.
My autistic son is high function and needs alil help in the social dept.
My ofher ds is very social tallkative and full of life, but also has a bit speech delay as well which sometimes he is very self concious of.
Sometimes i wish there was more support for our special kids community wose or for sports and functions ect