This girl!

This girl!

Thursday, September 26, 2013

Special treatment?

There's been a lot of controversy about the DAS (Disabled Assistance System) at Disney World, some people think that nobody should get any "special treatment" and that kids with special needs should not go to Disney because of the noise and crowds. Bloggers like Ellen from Love that Max respond to some of the rude comments and she is right on the dot in her explanations.
I too have some thoughts on the issue. The whole idea of the DAS is that kids or people with disabilities, visible and not, get the same chance to enjoy the attractions that the park offers. That "special treatment" does not equal "royal treatment," it just means that special needs kids need a little extra help so they can get the same enjoyment typical kids do. The outcome is exactly the same for both: the excitement of being on a ride or the chance to meet a beloved character. Of course there's always going to be somebody taking advantage of things that in theory are meant to help those in need, but I am not here to talk about that, I just want to say that there's more people who benefit from the system than people who abuse it.

Special needs kids like Sophia need extra help and extra assistance to do the simple things that come so easy to typical kids. She has got an iPad so she can communicate, not because she is getting royal treatment. The rest of the kids can talk naturally so they don't need the extra help. Sophia has a 1-on-1, not because she is beings treated like royalty for being special needs, but because she needs assistance with the everyday tasks that for other kids come like second nature. The teachers spend a little more time deciding what Sophia is going to eat and pay more attention to the consistency of the food not because they are treating her better but because she can't chew like the other kids, they don't need the extra help. I could go on and on but I think you get the idea.
Now, it is true that a lot of people love Sophia and are willing to do a lot of things to help her but that is because she has a great personality, she is sweet and she has the ability to win people's hearts, not because she is special needs.

We are thinking about going to Disney in a couple of years and will benefit form the DAS because we  may need some assistance, not because we think we deserve special treatment. Hopefully Sophia is walking by then but she may not be able to wait in line for hours so this card will be helpful. This system will help us enjoy the park just like everybody else.

Sunday, September 22, 2013


First week at home taking care of Sophia with a body cast on all by myself. Except for a couple of sleepless nights I'd say it hasn't been bad at all. I am very, very tired but not frustrated and I am pleased with that.
My list this week is simple, no description of any of my ten things cause I am tired,  did I mention I was tired? Cause I am! Anyway, here is my list:

Ten Things of Thankful

1. I was nominated for the Liebster award, an award for new bloggers. (will post about it later)
2. Sophia is her happy self.
3. At home easy and cheap hair dye.
4. Barney and Bob the Builder On Demand.
5. Sophia's beautiful smile and contagious laughter.
6. Being able to be home to take care of my daughter.
7. Sophia's teacher taking the time to come to our home to learn how to take care of the cast when Sophia goes back to school.
8. My fall television shows start new episodes next week!
9. Pumpkin latte is back.
10. Only 2 weeks left in the cast!!

Off to bed!

Wednesday, September 18, 2013

It REALLY doesn't get any easier

 It's done. Sophia had her hip surgery and has a cast on. She is finally home after 4 days in the hospital and is getting better every day.
Everything I predicted on my last post has been true. Even though I have been through this experience before and I was expecting everything, it REALLY doesn't get any easier. It's so painful to see your kid struggle and not being able to do anything to take the pain, discomfort and frustration away. I would trade places with her anytime!
A whole week has gone by and I feel like we are finally turning the corner. At the hospital we had to deal with the nausea and the oxygen level and while it was really tough I knew she was going to be ok. But what I was really fearing was Sophia's frustration and hence, my own.  I wasn't wrong.
The weekend was bad between pain from the incision and frustration, Sophia was screaming the whole time  (or at least it seemed like it) day and night, sometimes the pain medication helped a bit with the pain but not with the frustration, it was so hard.  But despite being so painful for me to see her like that, somehow I was able to be the mom that Sophia needed. Somehow I have been able to be patient and understanding, Sophia has all the right to be frustrated, she doesn't understand why she is in pain or why she can't move and play the way she is used to, she doesn't get that it's only temporary, for her the present is all that matters and for her the present sucks! I get that, I understand, so I am very thankful that I was able to keep calm and be there for her.
 Fortunately this phase was very short. After the weekend Sophia has been getting better and better and she is now back to her normal, beautiful, happy self. She is playing, laughing and babbling all day long, Sophia is such a brave and strong girl, I didn't think it was possible to love her more than I did before the surgery but I really think that my love for my daughter grew a thousand times! We spend our day playing with all of her favorite toys, changing positions and trying to keep her distracted and we have bonded even more.

It's done. The moment Eric and I were dreading for about 6 months is here, we went for a second opinion and decided that we were going to give it one more try and we did.  In a little over 2 weeks it's going to be behind us and hopefully Sophia's hip is finally fixed and she can start practicing walking again. Hopefully this third surgery was worth it because I don't want to put Sophia through this again, because it REALLY doesn't get any easier.

Saturday, September 14, 2013

Ten things of thankful

Today more than ever I need to come up with a list of good things to be thankful for. It has been a tough week, I am tired emotionally and physically, Sophia spent 4 days in the hospital because her oxygen level was low and she was too nauseous to eat. The surgery itself went well but it's really tough seeing my little one so uncomfortable and not feeling well. It's going to get better I know, but right now I need to make this list so I can believe it.

Ten Things of Thankful

1. There was no complications during the surgery: The doctors did their job and they didn't encounter any difficulties.
2. My husband was able to take a whole week off: I wouldn't have been able to do it by myself, we took turns to come home and rest and support each other making decisions.
3.All the support from friends: Everybody prayed for Sophia's recovery and some came to visit her and brought balloons, her favorite!
4: I am able to stay at home: Once again, I am so thankful that my husband's job allows me to stay at home and be there for my daughter when she needs me.
5. First week is almost over: That means only 3 more to go.
6.  Pain medicine: Thank goodness we can get medicine to help my little baby feel better.
7. Nurses: Most of our nurses were really helpful and caring, that really makes a difference.
8. Sophia's orthopedist: He stopped by our room a couple of times to check on Sophia and he called us back when we had questions once we got home. Makes me feel like he really cares.
9. Sophia's teacher:  She has been so supportive during Sophia's stay in the hospital, she says everybody misses Sophia at school.
10. Sophia's haircut: It was painful to me to make the decision of chopping Sophia's hair but it's the best for her and for us. It didn't get too messy when she was in hospital bed for 4 days and it was super easy to wash it at home, plus she still looks so cute!

Friday, September 6, 2013

It doesn't get any easier.

I should be used to it by now but the truth is I am not, in fact, it gets harder every time. Sophia's surgery is Monday and I am getting very anxious. I know my daughter needs it and she will benefit from it, I know it's what needs to be done so Sophia can walk the best she can. But I hate what usually happens the first few days after the procedure, I would love to be able to fast forward the first week... heck! the whole four weeks!

I know the whole process: I can see it now, she is very swollen all over: her feet and hands. She is asleep because of the pain medication. I can see her incisions and they hurt me. Eventually she wakes up and starts to cry, she is very week and can't take a big breath between cries and so she turns purple and sometimes her eyes try to go backwards and we have to give her oxygen. Then we try to give her some food so we can start winning her off the IV fluids. But she can't keep anything down because she still nauseous. I can see it, I have seen it in the past, and I don't want to see it again.

Eric thinks that she is going to do better this time around and that she is not going to spend too many days in the hospital and I really really hope he is right.

I have said before that I am also worried that Sophia is going to be bored and frustrated because she is not going to be able to move and play the way she is used to. But I am more worried about how she is going to express that frustration. We still don't have the iPad with the communication app and I don't know how I am going to understand what it's bothering her, or why is crying, whether something hurts or not. How  I am going to make her understand that I get it, that I know that she is frustrated and that she is going to be ok. I will do my best off course, to keep her happy and distracted but it does scares me.

I will trade with Sophia and I will have the surgery instead of her if I could, but I can't, so my only option is to be the mom Sophia needs during the next 4 weeks, a strong, creative, understanding and mostly patient  mom. Sophia needs this surgery and the benefit she is going to get from it is my motivation to be that mom.

This girl deserves everything! 

Sunday, September 1, 2013

Ten things of thankful

I am a little late making this week's list but it's never too late to be thankful for the good things in my life. September has started, this is usually a great month for me because it's both, my husband's and my birthday and it's also our wedding anniversary but this year I just want September to be over. I want those 4 weeks that Sophia is wearing the cast to fly by. That's why TTOT is going to be particularly helpful the next 4 weeks.
So here it is:

Ten Things of Thankful

1. My husband: even though sometimes I want to shake him and scream "are you kidding me?!!!", he always finds the way to make it to my list every week.

2. A wonderful summer: This was the first summer I spent with Sophia, just the two of us every single day. I was a bit nervous because she loves school so much, I though she was going to be bored. But it was awesome! we established our own routine and we  really bonded. I am going to miss her so much when next week.

3. My hair: I don't treat it well, I flat iron it and I curl it almost everyday and still it looks healthy. I am so thankful for that!

4. The people at the hospital where Sophia is having the surgery: We had the pretesting appointment on Tuesday and everybody was really nice and they made me feel that Sophia is going to be in good hands, they know Sophia's history and they booked a room for her to stay at least overnight.

5. Hand me downs: My husband's coworker has been so nice to us, she has giving us pretty clothes that don't fit her daughter any more several times. I don't have to buy any fall or winter clothes for Sophia this year!!!

6. My brother's new job: I posted about my brother finding a job after several months being unemployed, but that'snot all: he loves it! It's close to his house and his boss and coworkers are really nice, Very thankful for that.

7. Sophia's teacher: We had the orientation on Wednesday with the head teacher, the nurse, the new 1 on 1 and one of the other assistants. Once more I realize how lucky we are to have these people in our lives, they showed me how much they care for Sophia. They are going to put together a bag with the things that Sophia likes to play with at school so she doesn't get to bored when she is in the body cast and can't move. They are so thoughtful. 

8. Sophia's silliness: I love seeing her playing with her toys, she has such a great time. The other day she put this basket on her head and starting laughing out loud, it was really funny to see:

9: My international calling plan: I know I already mentioned this in the past but I'm so glad I have it, being able to talk to my mom every day in the morning is like my coffee, if I don't have it it's like a part of me is missing, I HAVE to have it!

10: My tiny but awesome family! I love you guys so much: