And the verdict is in!

FINALLY everyone stopped tiptoeing around the obvious. Although I knew it was coming (and actually asked the doc to say the words), it still briefly stung like a dagger. But I finally feel validated and followed my instincts. We've known something was "off" since Lia was about 4 months, and knowing that she sustained brain damage in utero we had every right to think so. Finally someone listened and paid attention to me, which, admittedly, is sometimes no easy feat . Spastic diplegia CP. We really must stop calling the poor girl Lazy Lia now, :lol: I think Laidback Lia is much more fitting. The diagnosis is going to enable us to seek additional extensive therapy for her, so YAY!

Lia is such a little talker. She repeats/tries to repeat everything we say. Her favorite word is "happy". Like I always say, how could you not fall for a girl whose favorite word is happy?! I think it's a sign from God, really. I remember praying when we found out about the brain damage that if I could have anything at all it would be that she would be able to show happiness. He's so smart She weighed 19#14oz.

Eve is walking now. She's a fiery little girl with a spirit to boot. I guess it's still the fighter in her. She's not much of a talker but she loves to scream. It's hard to hear her over the other 3 kids (and sometimes myself), though, so I guess she fits right in. She's still not on the growth chart, weighing only 18#6oz at 15 months, but the gap is continuing to close between them.

So overall, they're doing great. And to those who might question the positivity about this post, I decided that I can either sulk about something that can't be changed, or I can celebrate Lia'a successes and enjoy what I have. Yes, it's a little upsetting, but you never know what you're going to get when you sign up to have kids, and we knew from the time we were dx with TTTS that this would be a possibility. I have my Lia and no one else can have her

 

I am sorry to hear the diagnosis, but your attitude is amazing! Lia sounds like a little gem, and I am glad that now she can get all the help she needs. It sounds like she's a pure joy to be around though. Way to advocate for her and get the doctors to investigate... she'll benefit from having a mom like you in her corner.

 

She is lucky to have such a great mommy who appreciates all that she is now and will be!

 

Im sorry to hear about Lia's diagnosis but its a releif to have an answer. I have Cerebral Palsy (Spastic Left Hemiplegia. I also have a support CP group and petition on facebook that gives information and provides support so if you feel like you want to join let me know. Also if you need someone to talk to or have any questions feel free to PM anytime. My twin sister and I are TTTS Survivors and I was diagnosed with CP at 2 years, though the doctors knew something wasnt quite right with me when we were born.. so it was to be expected. it is very common with twins who had TTTS.

:hug:

 

I agree with this.. theres no use having regrets but rather to realize how blessed you really are.

 

I totally agree with this! Both of your girls are so lucky! I am sorry about the diagnosis but you have such an amazing attitude and I am glad that the doctor's started taking you seriously. Please keep us posted on Lia and Eve!

 

Your positive attitude, in the face of such challenges, is truly inspiring. Lia and Eve are so incredibly lucky to have such a positive and caring mommy! I am so sorry that Lia has cerebral palsy, but if anybody can deal with the challenges that will bring it is you. Your love for your perfect little girls is so obvious and heart warming. Thanks for sharing your story and GL!

 

Wow. My Makenna had a stroke in utero. Did they call Lia's that? She is almost 17 months and just started walking Friday. I'd love to chat with you. We don't know anyone with a story like ours. So glad you got answers! How old are they?

 

Totally agree! :clapping:

 

:hug: What lucky girls to have such an amazing mom! You fought for you dd and got the answers so you could make her life better, your attitude will do that as well! We all need to be "happy" w what we ARE blessed with!

 

i agree with PPs - i think you have an amazing attitude & i think your children are blessed to have such a loving & caring mother. :hug:

 

Thanks, everyone. She's such a trooper and we love her very much.

 

:hug: I am so glad that you followed your instincts and got a diagnosis. Now there is no more wondering and you can move forward. Way to be positive. You are amazing!! :hug:

 

I also think your attitude is amazing! :clapping: Lia sounds like such a delightful child, and extremely verbal! You should be really proud of both your girls' accomplishments, and proud of yourself for being such a supportive Mama to them.

 

hugs to you mom!!! Your attitude and outlook on life is whats going to make the difference! If it makes you feel any better my DD didn't crack 20 lbs till she was over 18 mos old - and now at 4 is just getting on the growth chart - but is healthy and thriving and as the pedi says as long as she's gaining on her own pace then its all good!

 

Sorry to hear about the diagnosis but I'm glad that it means you will be able to get her even more therapy. I love that you seem to look at life as your glass is half full not half empty. I personally wish I could be more like that. She sounds like a precious little girl who has already brought you much joy and will continue to do so.

 

I just wanted to say that I think you're amazing...
I love that Lia's favorite word is happy!!

 

So glad you can get the services you want for her now! I have a patient in my office who was diagnosed with CP as a baby and now at age 12 he plays basketball and football and unless you read his chart you would never know. Kids are so resilient that with therapy and time I think you will see huge strides. And, it sounds like she is on track with social and language skills. That is great! I love how positive you are. No wonder she is thriving!

 

I am sorry to hear the diagnosis, but positive attitude is the way to go, you can not let something like this beat you down. Your daughter sounds like a fighter, and will do lots of good in her life. She sounds like she has amazing parents to guide her thru it, which is what she needs, family!!! happy Lia that s/b her nickname..Good Luck with everything!!

 

your so right! we just got our diagnosis of ASD for both twins and i feel the same way, you can sit and sulk or you can get up and do everything possible to help I truly believe mom's of SN's Children are Super Mom's! not to mention we have TWINS to boot! So we are SUPER SUPER MOM"s!!! PM if you want to chat more

 

Your attitude is infectious!! Congrats for the diagnosis and it is not the end of the world!! You are a gift from God to her and Lia is a gift from God to you!

Enjoy her,
Jenn