Just need to talk about my dd's diagnosis...

[Taximom962]

I just need to talk about my dd Emily who is 2 1/2. She has recently been diagnosed with verbal apraxia which is a brain disorder. She can understand us and do things, but she can't form words with her little mouth to talk back to us. I don't know if this is the right area or not to post...but I am feeling depressed about it. I go through real strong periods where I just go on with life, but then I look at her and wonder what kind of life she is going to have. I've visited a few sites dedicated to apraxia info etc., and most of the time it's moms like me posting "what is this?!" type questions and then you see advice from the experienced ones. It's not like she is going to die from this, and that keeps me going as well. It's just that the road seems so long ahead of us and I have 3 other kids (all w/their own issues of course!) and a dh who is good, but I don't think he understands that this is going to take a lot of work on his part as well as mine. I don't know why I'm crying really, maybe I'm just tired for now. She is in speech therapy with other kids and I have read that the kids eventually learn a lot of words and can communicate as they get older. I guess there are also other problems on the way that these kids incur because communication is SO vital for everything you eventually have to learn... She's just such a sweetie and another thing that is real hard is that she is almost 3 and the other moms/dads at the park etc. think she's still a baby because of her sounds (no real words). We are teaching her signs as well, but still....
We've been to tons of dr's and I guess I should be happy that we have a diagnosis, and that we can do a lot to help her. I'm just not feeling that way right now. Well, thanks for listening. I just needed to write!

[momof4]

Hi Taxi!

This is a great place for support. You just write whenever you need to! I'm so sorry for what you must be going through. My children are all healthy but that's one of my biggest fears. I'm sorry I don't have any answers for you. But I'll be praying for you.

Hoping you feel better,
Angela

[hoboswife]

Taxi,

You and your family are in my prayers.

[Taximom962]

Thanks for your prayers. They will help! I feel a little better than I did last night. I was probably just tired. I'm still overwhelmed by this disorder though! I guess I'll just keep reading up on it and do the best I can!

Thanks for listening!

Becky

[Juliecc913]

Blessings to you, Becky. When our children suffer, we suffer. We want everything to be easy for them. You and yours will make it through this. Crises like these really help put things in perspective. Know that you are in my prayers too. Keep putting one foot in front of the other. Cry when you need to and laugh when you can.

Peace be with you.

[Taximom962]

Thank you Julie! I don't know why I'm like this! Usually I do this (crying/feeling down) right away, and then I'm o.k. and go on with whatever I need to do. And it's not even that time of the month-which usually explains my tearfulness...

I think it must be that when I read the other info on the site-I don't see that there is a real clear way to manage the problem. And there are so many different results, and the possibility that this could take years gets me down. I'm a hard worker so it's not like I can't handle the work and time that this is going to take! Well, I guess I'm hoping just talking about it will help some. Thank you so much for your prayers! I should probably go read Job or something so I know what real troubles are! Thanks for listening again!

Becky

[Juliecc913]

Becky, Please don't minimize your problems. It is okay to have down moments and you are doing exactly the right thing by acknowledging it, talking about it and researching the topic. If you can find other mothers who are dealing with this issue it might be helpful for you.

Our situation in no way compares to your, however, our youngest was born with a serve case of club feet. While our son's case was really bad and we found no one who had that bad of a case, just finding someone who had gone through the process was helpful to me. I could ask her questions that our doctor really couldn't answer and probably wouldn't have totally understood. I'm very grateful for that woman and hope that someday I will be able to be that person for another mom.

God bless.

[Taximom962]

Hi Julie, thanks for writing. My 3rd child was born with one club foot and she has had 2 surgeries to repair it. The dr's kept saying it would have been better if BOTH feet had been club, I guess so both of her feet would be the same size. One is slightly bigger than the other, but we still just have to buy one pair of shoes for now! She's doing fine but since her muscles atrophied in her calf she has a hard time doing the balancing and jumping things in school. I just tell her teacher and they understand. How old is your child? Have you had to have the surgery yet? I hope all is well. My mom said that back in her days they didn't do anything and the kids were stuck walking on their feet like they were!

I'm trying to go day to day with my other dd. Today I found out that our new insurance (dh's co. switched ins. cos. 9/1) doesn't work with the place that she's been getting therapy at since May! I do hear from other mom's/dad's etc on this site dedicated to apraxia, but it's not all good news! A lot of them are going through what I am, and a few have gone through it for quite a while. Once in a while there are the real encouraging words, but most of it is us plodding through this thing! I'm keeping my chin up, and I really appreciate everyone's prayers and caring thoughts! Thanks again! Becky

[Juliecc913]

Hey Becky. Yes my son has had his surgery--8 long hours. His feet are different sizes too. The left one was overcorrected so I am afraid they may have to do a second one. He is really big for his age. He is just four buy is the size of a six year old so his poor little feet and ankles really have to support alot and I worry about that too. Sometimes it looks to me like his left ankle should break the way it is positioned.

My husband and I are so grateful we life in the United States where this condition could be corrected. Our son's case was so bad that he literally would not have been able to walk. We go back on the 29th to see his orthopedic doctor.

I hope that you will be able to get your daughter in with a good therapist. Doesn't insurance suck sometimes? (Sorry for being so crude). They make it so complicated and just when you get comfortable something changes. I guess it creates jobs for folks but when you are dealing with people's lives, I mean really!

Have a great day. It is the middle of the night here--can't sleep.

[Taximom962]

Hi Julie! I hope everything works out for your son. My daughter's foot was the same way-it almost looked like a chicken wing. The surgeries helped so much, but you can tell the difference and I'm just hoping kids in school aren't cruel enough to say something. She's handled it amazingly well. I know what you mean about wondering about holding up their weight etc. She has trouble hopping and skipping etc and I always have to explain to the teacher about her leg. They do those developmental tests in her school to see how everything is going, and they always want them to balance on each leg for 10 seconds! She tries, but she can't very well. If it's any help, my Ortho told me that Kristi Yamiguchi (sp?!), the Olympic ice skater was born with 2 club feet and look how far she has come! He also told me to try to get her into dancing or ice skating and that would help strengthen her legs. Maybe you could find something for your son-martial arts maybe? We haven't been able to get her into anything-mostly $$$ issues, but she is interested. So maybe someday!
I laughed when you thought you were being crude! I have found myself using words (not the real bad ones!) lately that I don't even let my kids say! Mostly in reference to insurance companies!
Oh well, that's life I guess. Today was much better mood-wise. Maybe 9/11 was getting to me w/o me realizing it! It was hard to get away from it, you know?
Well, take care! Becky (it's late here too, can't sleep either!)