This girl!

This girl!

Saturday, November 23, 2013

Ten things of thankful

What a week! With ups and downs, more downs than ups to be quite honest (you can find out why here). In weeks like this is when this marvelous blog hop comes in handy. Thank you Lizzi for having this great idea. Happy TToT 25th weekaversary by the way :)
It's going to be a challenge to come up with ten things but here is this week's list:

Ten Things of Thankful

1. It wasn't pneumonia: Sophia was in the hospital on Monday with what it seems like an asthma attack or croup, it's still unclear, but I am thankful that we were able to go home the next day and she didn't need antibiotics.

2. Hubby: One of the times he saw me getting frustrated he jumped in to take over so I could step out for few minutes and take a breather. I felt supported and understood.

3. I am a new american citizen: The ceremony was Wednesday, it was beautiful and they made me feel welcome to the country, I felt like they were happy that I am part of the american family:
4. My in laws: My husband couldn't go to the ceremony because he stayed home with Sophia, so my mother in law and her father came to be with me and stayed the whole time!! (it was 4 hours long!)

5. "Catching fire" is out: I read the three books and loved it. Can't wait to go a watch the second installment.

6. I saw my baby being herself today. Finally!: The week has been tough for all of us and Sophia has been very uncomfortable but today she laughed and played and behaved like her old self... at least for few hours.

7. Hubby and I are never sick at the same time: I am so glad one of us is always healthy to take care of Sophia if the other one is sick. I hope we continue with that pattern.

8. My husband's car broke down on Thursday but fortunately he was able to get home safely and over the weekend we got it fixed.

9. Thanksgiving week is coming up: Hubby is taking a couple of days off and we are going to get together with the family and eat delicious food and be thankful for all the good things this year brought.

10. Sophia's dad: She is a lucky little girl, her daddy took care of her when her mommy was becoming a citizen and he did a great job.
Well, would you look at that, it wasn't a difficult as I thought! (hubby helped though)
Have a great week!


Thursday, November 21, 2013

I wish she could tell me.

I have gotten to the point where I can see Sophia's strengths clearer than her limitations. I celebrate her progress and her reaching milestones. I see Sophia for what she really is: an amazing, sweet, brave, happy girl who has overcome so many adversities, a girl who made me  see life in a very different light and who I am very proud to the mother of.

But there's days like today when I don't feel that optimistic and understanding. Days when the fact that Sophia has her limitation hits me like a ton of bricks and it leaves on the floor with no arguments to lift my spirit and all I want to do is sob, sob until there's no more tears to be shed. Sophia got sick on Monday, I had to bring her to the ER because she was wheezing and she was having a really hard time breathing. They took her in right away and gave her breathing treatments and even though she was a lot better, they admitted her and we were discharged the next day. The wheezing is gone but Sophia is still not feeling great and is going to stay home the rest of the week. 
The fact that she got sick is not what made me sad today. This has happened just two other times when something is obviously bothering Sophia and I can't figure out what it is. She was very uncomfortable and I tried to meet every need, hunger, congestion, stuffy nose, temperature, thirst, pain... you name it I tried. She was not happy in her bed or my arms or the floor or anywhere. She was making this weird sound along with weeping and screaming. She looked at me like saying: "how come you are not helping me?" "Why don't you understand me?" and it killed me. I want to understand her and I do most of the time, but not today. We had a follow up appointment with her pediatrician and everything looked fine so I didn't think it was anything serious. She was mad, angry and very frustrated and my words were not soothing her nor my hugs or touch. 

This made me mad! I wish she could talk and tell me what she needs, I would give it to her in a second, anything she needs! I wish she could understand me when I tell her that everything is going to be okay. That it'll pass and that she is going to feel better real soon. I don't know if her frustration is because she knows that she can't make herself understood or because she doesn't understand why I don't get what she is saying. Either way it breaks my heart to see that look on her face and it's on days like these that I wish she didn't have a syndrome. I don't wish for a different child, I want the same beautiful Sophia just with a way to communicate her thoughts to the world.

I know it's okay to feel this way every once in a while and that it's even healthy to feel it and let it out. Today was that day and I did let it out. I feel better and Sophia feels better, in few days she will go back to her happy self and I'll forget that I felt like this, until it's time to let it out again.

I'll leave with a video of my baby being the happy, sweet baby that she is:

Saturday, November 16, 2013

Thankful me

So many things to be thankful for this week! Let's get to it:

Ten Things of Thankful

1.  My in laws: mi mother and sister in law have been baby sitting for us so hubby and I can go out on dates. Last Saturday we went back to the casino with more time and a little more money,which we lost but I am not complaining. We played the roulette and it was like in the movies, it was a lot of fun.

2. Great deals: I score a great baby video monitor for about half the regular price thanks to craigslist. It's great to be able to see Sophia and make sure she is safe in her big girl bed, plus I saw her getting out of bed this morning and she did a really good job.

3.  The weather today, it's the middle of November and it was 61 today!!!  

4. Cheap, fun things to do as family. We went to Bass Pro Shops today and had a lot of fun, Sophia got a picture taking with Santa (for free I must add), looked at a lot of Christmas decorations, had a nice lunch in their restaurant and got to see a big fish tank which Sophia loved:



5. My husband: He is away again this weekend and I miss him so much! 

6. Sophia is eating a lot!! Let me explain: she has been always smaller for her age but a few years ago she was on Pediasure supplements and we had to add butter to her meals to boost a little bit her caloric intake. Some doctors have asked if she had ever feeding tube when they looked at her charts but I can't be thankful enough that that was never the case and that she is off the Pediasure and getting bigger and bigger every day.

7. Pintrest: While it is time consuming and I can easily get lost in the wonderful land of organization ideas... I have found a few very helpful cleaning ideas, gift ideas as well as very tasty recipes.

8. Cuddling with Sophia and her daddy in the mornings.

9. Lizzi form Considerer, nominated me for the Liebster award. Thank you Lizzi and I promise I'll accept it real soon and follow the rules, at least most of them.

10. Last but definitely not least I am so thankful for Sophia's progress in every area, but specially walking, she is just doing so well, see for yourself: (I apologize for the 3 or 4 seconds the screen goes black but I had to put the phone down for safety reasons)

Thursday, November 14, 2013

Reaching milestones


When we have a baby, we can't seem to wait for the them to reach each milestone on time and when they do we are already looking forward the next one. We can't wait for them to sit up and when they finally do we can't wait for them to crawl, then walk and talk. Being the mother of a kid like Sophia has taught me to slow down and take advantage of the fact that she is taking the time to reach and master each milestone and really sit back and enjoy.
This week has been one of the happiest times in my life, I see that the surgery worked and that it was worth it. Sophia is more stable and really walking and cruising. There was a time when I wasn't sure whether she was going to walk at all, then I thought that she may walk with support, but this week I can see that there is a big possibility that Sophia could walk! On her own! I don't know how long it is going to take her to get there, it is in her own time, not mine and I am truly ok with that. I decided that I am going to enjoy the process, the cruising, even the bruises and the falls. And when she does walk I know I am going to celebrate with her that victory every day. 
I have learned that reaching milestones is not just about the final goal, but the journey to get to them. My job as Sophia's mother is to provide her with the tools to get as far as she can and to enjoy seeing the process to get there. The fact that I can accept it and really be ok with respecting Sophia's own time  is sort of a milestone for me too.  

Enjoy:


Thursday, November 7, 2013

She just needs the means

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Sophia has been doing amazing the last couple of weeks. There has been a lot of progress in several areas: gross and fine motor skills as well as in communication. After the surgery and being a month in the cast, things were kind of on stand by but then all of a sudden she is crawling and moving better than ever, we can see that she wants to walk and is practicing and getting better at it. Sophia is also grabbing the spoon and tolerating assistance in feeding herself. She is grabbing her bottle and bringing it to her mouth at least twice each day which is a lot more than a few weeks ago. All these advances are proof that there's a lot more to Sophia and that her potential is far bigger than what we can see now.

There has been a lot of progress in the communication department which  I am particularly excited about. Sophia doesn't talk but she is finding ways to let us know what she wants. She makes different sounds and that's how I know if she is happy or if something is bothering her. She grabs my hand and puts it next to her spoon to ask for more food or sometimes she gives me a toy to let me know that she wants me to play with her. The other night she crawled to us and made a different sound while looking upstairs and raising her arms, it was very clear that she wanted us to take her to bed. Most of the time, I can get what she wants to say but when there's something specific that she needs we both get lost in the frustration.

We need a tool. The desire is there, Sophia wants to communicate and knows that in order to get what she wants or needs she needs to let me know somehow. At the end of last year, we got approved for an iPad and an app. Unfortunately there have been delays and we haven't been able to start using it. I am working on it and as of today it seems like we are going to be able to start next week. But we need something now, Sophia wants to communicate and she is so ready.

This is what her teacher and I came up with:
 She does very good with pictures, much better than with drawings or icons. Real pictures mean something to her and she can relate to them. She can look at picture of a toy and then look for it, I can give her two pictures of two different toys so she can make a choice and she does:
At school she holds a picture of my car and she knows that it's time to go home and looks at the door. This system seems to work but the ultimate goal is for her to take initiative and grab a picture of whatever it is that she wants and gives it to me. It's a lot of work and it takes a lot of patience and consistency but Sophia is worth it and I know, with my all heart I know, that she is going to do it. Sophia wants to communicate with the world, she just need the means to do it.

Sunday, November 3, 2013

Ten things of thankful

I know, I skipped last week but please know that when that happens it's never for lack of good things in my life but because I really think there is not enough hours in the day. This week I am a little less tired than last week so here is my list:


Ten Things of Thankful

1. Sophia's recovery from surgery: It hasn't been a month after taking the cast off and each day she is better than the day before. She is still a little stiff but she is back to crawling all over the house and kneeling and standing with support. On Monday we are trying the walker and I am sure that she is going to be back where she was before the surgery in no time.

2. Quality time with the in-laws: It had been a while since the last time we all got together and we finally did last weekend and had a really great time. We carved pumpkins, toasted the seeds and ate pizza, good times! The pumpkins came out great:
3. I decided to dress Sophia up and take her to Eric's company Halloween party. I figured I would feel different there with a lot of kids of different ages than at my friend's party (you can read about this HERE) and I was right, we had a good time and Sophia loved visiting daddy at work:
4. My attempt to transition Sophia from baby to toddler was a success! She is loving her new big girl bed. (You can read all about it HERE)

5. The Red Sox won the World Series! at home!! 

6. The beautiful weather on Saturday: It's November and it was 66 degrees! I didn't think I could take Sophia to the park and go on the swing until next year but today was definitely a park kind of day.

7. Sophia's teacher and PT: they made it to the list again, they both are always coming up with new ways to help Sophia walk, crawl, sit, and stand better. They show me every single day how much they care for my daughter.

8. I still miss my husband: He was away for the weekend and even though I had a great time with Sophia I couldn't wait for my hubby to get home.

9. I made a pretty good lasagna this week, I am losing the fear to cook.

10. I am thankful for my sweet girl because... well, see for yourself:
video

Thursday, October 31, 2013

My baby is not a baby anymore

This one was a big week for the Frost family: no more crib for Sophia, it was time to switch to a toddler bed. Our baby is officially a big girl!
I bought a pink race car bed a couple of months ago and I got an awesome deal for it. I picked this bed for several reasons, not only because it's pink and very cute:
I wanted a very short bed, I also wanted the edges to be round and soft so she could go in and out easily without getting hurt. After reviewing many toddler beds, this one seemed to be the perfect match. I decided to wait until after the surgery and she was out of the cast, so this weekend we set it up and gave it a try. We were really nervous that she was going to roll out when she was asleep and we didn't want to put a safe guard because if she decided to kneel and lean on it she could flip over and fall. But I also want to encourage independence and teach her that she could get out of bed on her own. After trying different things I decided to put a body pillow between the mattress and the border opposite to the wall and it works great! 
Sunday night was the night. I showed Sophia the bed and she smiled and knew immediately what she was supposed to do. The crib is still in her room (and it will be who knows for how long, I love you hubby ;) and she looked at it and the the bed and was confused for a minute but never tried to go towards it, instead, she got in her usual position to sleep with a huge smile on her face. We said our good nights, turned the light off and shut the door. We didn't hear a thing except for a very familiar snoring on the monitor, we were really excited but still ready for what the night was going to bring.
 After one hour of so, she wakes up crying. She has done this before so it's hard to tell whether it was the new bed or not. Eric held her for a bit, she feel asleep and stayed that way until the next day. I was very attentive the whole night and I heard her making noises around 5:00 am, then she was laughing and talking to herself. At 6:30 I went in to get her and this what I saw:
I think it's safe to say that Sophia liked it. It has been four nights and every night she is very happy to get into bed and wakes up very happy. In the morning I have been showing her how to get out by lying on her belly and then she basically pushes herself out until she is on her knees on the floor and I can tell she is proud for doing it. 
This is a big deal for me because it's the first step towards the transition that I am determined to help Sophia to go through. I want her to reach her full potential, I want her to grow as much as she can, to be as independent as much as she can. It's a difficult process because I need to do it without compromising her safety, I need to make sure she is ready and then help her to overcome the challenges that come with every change. It would be very easy for me to keep treating Sophia like a baby and  keep doing everything for her: keep feeding her, changing her diaper, talking for her and deciding for her what she is going to eat. But I want her to be her own person and that's a lot of work but in the end it's so worth it. 
It's a long process and Sophia is making the transition form baby into a toddler slowly, but surely. Today was a big girl's bed, tomorrow it's self feeding, then it'll be potty training. I don't know what her best is going to be but I am going to help her get there, one step at a time.

*I already see what the next step is going to be:
Tonight Sophia grabbed the bottle and brought it to her mouth, twice!!!

Thursday, October 24, 2013

I'm not there yet.

A few weeks ago, in my post: I am starting to own it I talked about how good I felt when the teacher said that Sophia was participating in the different school activities in her own special way. It was a long process but I was finally able to enjoy a meeting with parents of typical kids without feeling isolated. That's definitely a step in the right direction, but I still have a long way to go, I am not there yet.
There's other occasions when I still grieve for that child that I thought I was going to have when I learned I was pregnant. Most of those occasions are the celebrations and holidays I spend with my friend who is the mother of two typical kids.
 We have been friends for over 15 years and we have been there for each other through all the milestones: engagements, weddings and pregnancies. We get together at least once a week and try to cook something colombian and have a play date. I can deal with these visits, when it's just us and we are talking and the kids are playing. I don't feel isolated and I almost forget that Sophia is chronologically older than my friend's daughter. The problem is when it is this girl's birthday party, or Christmas or Halloween. I see in my friend's daughter most of the things that I am missing out on not having a typical kid: the excitement of opening presents at her birthday party and realizing that it's the toy that she has been asking for, or making sure she is being a good girl because Santa is watching, or having an argument about what she is going to be for Halloween.  It still hurts, and even though I adore Sophia just the way she is and I would honestly not change anything about her, it still hurts. My friend knows that this is nobody's fault, it's the way things are and it's our reality, she also understands my feelings and respects them and I so appreciate that. There will come a day when I can celebrate all of her children's milestones without feeling bad about it, but I am not there yet.

This year I decided to not go to my friend's house for the traditional Halloween party. I am not ready. I decided to stay at home that day and play with my little girl; maybe we will play one of her favorite games and enjoy her laugh and silliness. I might go next year, who knows, but not now, I am not there yet.
Make no mistake, I love this girl!

Sunday, October 20, 2013

Ten things of thankful

It'a been a busy and productive week. I am in cleaning mode which is exhausting,  but I love the feeling of accomplishment when the work is done, plus "spring cleaning" was way overdue. Anyway, here is this week's list:

Ten Things of Thankful

1. I am cleaning one room at a time and this week is the kitchen. along with scrubbing and disinfecting I am also redecorating, I am usually able to get a refresh look on a very tight budget and this time is not an exception. I am very happy with how things are turning out in this room.

2. I made apple pie for the first time ever and it actually looks and tastes pretty good. In order to get my excitement you need to know that I am not great in the kitchen, I just know how to cook a couple of things and that's it. But this came out great:

3. Sophia's recovery: it's a slow process but she is getting there. As always, the help from the teacher and PT have been very valuable and I am very confident that Sophia is going to get where she was before the surgery and even beyond that.

4. Last weekend we went to a local farm and Sophia had a blast! She liked sitting by the pumpkins and loved the wagon ride:
5. My mother in law came over to babysit so hubby and I could go on a date. We so needed that! Thank you Nancy!

6. Eric and I are still adventurous, well sort of. We thought about watching the ball game sitting at the bar at Wild Wings for our date, but as we got in the car we decided to take off and drive 50 miles and go to a casino. We only had less than 2 hours to spend there before we had to go back. We were so excited and then sad that we had to leave so soon, like teenagers with a curfew!

7. Sophia is having more eye contact with her grandmother. For the longest time Sophia was not really paying attention to other people when they say hi to her, but lately she is not only maintaining eye contact but she is actually smiling and saying "hi" back to my mother in law.

8.Eric's coworker has been sending me hand me downs from her daughters. Lots of beautiful clothes and I don't remember the last time I bought an outfit for Sophia. I have to think of a way to thank her for her generosity.

9. I finally warmed up to Carmen, Sophia's new 1-on-1, she is very nice and most important she loves Sophia and wants the best for her. I miss Lauren a lot but Carmen has done her best to make sure that Sophia has everything she had when Lauren was her aid.

10.  My wonderful husband sent me beautiful flowers just because! That gesture made my whole week! Thank you baby!

Have a great week every one!



Saturday, October 12, 2013

You did it Sophia!

On Monday afternoon Sophia's cast came off and we could finally put this episode behind us. Her skin was very dry and irritated but nothing that can't be solved with some lotion and TLC. She is very stiff, of course, but she is going to get where she was before the surgery slowly but surely. It's wonderful to see her looking at her legs and rub them while a huge smile appears on her face.
The first thing we did was give Sophia a bath and I don't know who was happier, Sophia for being able to play freely in the tub or me for finally being able to get her really clean and get rid of that stinky smell of 4-week-old cast. She had the time of her life!
 We all had a great night and Sophia was happy to sleep on her belly, which she loves, and woke up very happy. The rest of the week has been good, still adjusting to the feeling of being cast-less and to the stiffness. Sophia has sat on the floor near her tent to play with her toys several times already and even though it is still hard for her to move she loves having all her favorite toys close by so she can choose which one she wants to play with:
So it's over, it's done, and there's no one else to give credit to than Sophia herself. Sure, we had some sleepless nights and she was very heavy to carry because of the cast and of course it was very painful to see her while she was in the hospital, but the one who had to be in pain from the incision, the one who was swollen and uncomfortable was Sophia. The one who could not move wherever she wanted was Sophia, the one who was forced to sleep on her back all night long (her favorite position to sleep is on her belly) was Sophia. The one who had to be in a sweaty and smelly cast for a month was Sophia and not us. And yet, I can count on one hand the amount of times she complained. There were days that Sophia was as happy as anyone can be and that made the whole process a lot easier than we thought it was going to be. Seeing her laughing and being silly like she was assured me that everything was going to be ok.

The surgery was a success in the sense that everything looks exactly like it was intended to and there was no complications during and after the procedure. Now Sophia will get back to crawling and using her walker and hopefully the hip stays in place so Sophia can walk as best as she can. Little by little we are getting back to normal, we are getting back to our routine and to enjoying the beautiful sound of our daughter's laugh, that laugh that is worth all the sacrifices we went through last month. 


video

Friday, October 11, 2013

This week's TToT

First of all I want to apologize to all the blog hop bloggers for not replying to the very nice comments on my posts and for not leaving any comment on theirs. I haven't had time to read since I am trying to catch up with all the things that were on stand-by while Sophia was in the cast. This has been a busy and exciting week with a lot of things to be thankful for:

Ten Things of Thankful

1. The cast is off! Don't have to explain that one.

2. The wound is completely healed and her skin is very dry, but not irritated nor has any bed sores.

3. I started to work out again and it feels pretty good.

4. To see Sophia doing the things she loves so much like sitting on the floor and playing with her toys, or having a real bath in the tub or riding the shopping cart at the grocery store is priceless:




5. I reconnected with my dear friend from Colombia and I am so glad to confirm that our friendship is still strong after all these years apart.

6. This is my tenth year living in the USA and while I miss my family as much as I did on day one, I am so glad I stayed because here is where I found the love of my life and the best father for our beautiful daughter.

7.Talking about living in the USA, today I passed the test and interview to become a citizen of this great country. I am very excited and I really hope this will help my mom next time she asks for the visa to come and visit her granddaughter.

8. Colombia's national soccer team qualified for the World Cup for the first time after 15 years!!! I am so excited to see them playing in Brazil.

9. On-demand TV shows. I love that I don't have to stay up late to watch my favorite shows but I can watch them anytime I want.

10. Fall in New England. I love when the weather is a little cooler, but not too cold. I love my pumpkin flavored goodies, and the beauty of the leaves changing colors on the trees.

Have a great week everyone!

Saturday, October 5, 2013

10 things of thankful

I didn't get to do my list last week, not for lack of thankfulness but because my laptop was acting up and I have been too tired to deal with it. But I am here, feeling very lucky and grateful and here is why:

Ten Things of Thankful

1.  Sophia is a very brave little girl. She didn't let the cast to stop her from being the happy girl she has always been, making this episode in our lives much more bearable.

2. The weather these last few days, week actually. It has been a very pleasant transition from the heat to the cold, last year we didn't have it at all.

3. Sophia's teacher and physical therapist. I can't thank them enough for all their help these last two weeks, they have truly gone the extra mile to make sure that Sophia is comfortable and able to participate in the all the activities.

4. Pumpkin latte. I know I said before but I just love that stuff, the smell, the taste and the feeling I get when I have it =)

5. My mother in law. She came over last weekend while Eric was away on a trip and kept me company. It was nice to have the distraction plus she brought lunch and dessert.

6. I still have a job. I work only two days a month and a few weeks ago it seemed like they were taking those hours away from me; but I was worrying about nothing because it ends up that I am keeping my hours after all. It's only two days but they help a lot.

7. Boston market. Eric and I have this sort of tradition, we eat at this restaurant once on a weekday and we get a coupon for a free meal on Saturday. We love it, it's cheap and delicious and a nice alternative to burgers and fries all the time.

8. Sophia's classmates. They all have been very sweet and so helpful now that Sophia is in the cast making her last two weeks in it fly by.

9. School open houses. I attended Sophia's school open house for the first time in three years, which you can read about here. I am thankful for her progress and  for how I was able to appreciate Sophia's unique and special way to participate in the activities without feeling sorry for myself.

10. Butternut squash oven fries. If you haven't had this you've gotta give it a try. Even Eric likes them and that says a lot!!

Have a great week!

Thursday, October 3, 2013

I'm starting to own it.

First of all I want to give a quick update about Sophia's recovery, she is doing so well and so much better than I expected. She has accepted the fact that she has a cast on and has adapted to this reality. She still looks at her tent and the toys in it and wants to get them but doesn't get frustrated when she can't do it, she just wants me to play with her and read books together and I can definitely do that. The biggest challenge has been carrying her and keeping the cast clean and dry and we've done our best to do so. Sophia has been going to school for a week and is very happy to be able to have a somewhat regular routine. The cast is off on Monday and she is going to wear a brace which we are going to wean her off little by little and after that we can really put this episode in the past for good.

Today there was an open house at Sophia's school and even though I talk to her teacher everyday and Sophia has an IEP and her curriculum is a little different from the rest of the kids I wanted to go and see what kind of activities Sophia is exposed to everyday.  The teacher showed us all the things the kids are working on, projects, paintings, self portraits, etc, and I could see my daughter's work in every one of them.  Even though there are other special needs kids in the classroom, it's very clear that Sophia is behind the rest but that didn't bother me at all today. The teacher explained that in every activity, all the kids, no matter where in their development they are, all of them get exposed to it and get the chance to participate and the teachers help them with their individual needs. Sophia may be a little behind but she hasn't stopped progressing since day one and these teachers and therapists have made sure of that.

One of the things that I liked the most was the beautiful drawings that the kids made of their families. Sophia's wasn't a drawing but a photocopy of a picture of Eric and me. Sophia decorated them with dot markers, the teacher told me that she recognized us and was smiling the whole time. I could see her work on the photocopy and I could picture her coloring it with the markers. Today I was able to enjoy my daughter's work without longing for what it would have been if she wasn't special needs. Up until today I was able to do that only at home, isolated from the rest of the world, it was still hard for me to sit in a group of typical and special needs parents and not being a little sad for not belonging to the first one. But not today.

 Yes, Sophia is a special needs child. She has specific and unique needs, she is getting the help she needs and she is responding to it. She is a special needs kid and that is not stopping her from participating in the school activities, socializing, playing and having friends just like the rest of the kids, only in her own special way.

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

TToT

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:











Wednesday, August 28, 2013

The day I will never forget.

It was January 1st 2011, Eric and I were watching TV and Sophia was playing on the floor right next to us. It was about 6:00 pm, a totally normal evening at the Frost's home was about to turn around.
A few weeks before, Sophia started having seizures, we talked to her neurologist and after doing an EEG-which showed a lot of brain activity-prescribed a medicine to control the seizures.
They were under control until that awful night on New Year's day. Sophia was lying on the floor on her belly, all of a sudden she started making this weird sound and I knew something was wrong. I picked her up and she was having a really bad seizure, she was having a hard time breathing and she was turning blue. Her eyes were almost rolling all the way back in her head, there was a lot of drooling and a lot of twitching. The doctor had told us what to do depending of the length of the seizure, after 2 minutes into the episode we knew it was time to call the ambulance. Eric went outside with a flash light to guide the paramedics to our house and I stayed inside watching my beautiful girl struggling to breathe. I remember looking at the clock and seeing the time go by, 3, 4, 5 minutes and the seizure was still going on. I was begging her to come back to me. I can see the scene right now as I close my eyes, we are both on the floor and I am crying and begging: "Sophia please, come back, come back!"
The ambulance was finally here and by then Sophia was starting to get better, the paramedic put her in the truck and said that she was still having a seizure. They started an IV and took us to the hospital. From there they called the neurologist and he increased the dosage of the medicine. Sophia started to act normally about an hour after we got to the ER and they sent us home.
That was the last time she had a big seizure, she has had a few episodes here and there with some twitching and drooling but nothing too bad. The doctor has increased the dosage a couple of times because she is growing and to control these episodes. We have a different medicine just in case she has a 5 minute long seizure, which I hope we don't have to ever use.
I will never forget this day, I wish it never happened but it did, Sophia has epilepsy, it's under control but it's there and we have to be prepared in case it does happen again. I try to not think about that and focus on the good things instead: we have a smart, special, beautiful girl who makes us smile everyday.








Friday, August 23, 2013

10 things of thankful

One of my favorite days of the week is when I get to think about what I'm thankful for, it's great to see that there's a lot of good in my life, so without further adieu these are this week's ten:

 
Ten Things of Thankful

1. Every milestone Sophia reaches: I learnt the hard way that she is going at her own pace, not mine, so when she reaches milestones is really great. Last week she started to blow "raspberries" and I know this is an important step before language appears, I am so excited!!
2. My husband: He has made this list several times already, he must be good! He is away for the weekend and I miss him so much!
3. My dear friend in Colombia: Despite being so far from each other, we have kept in touch and every time we talk is like we have never been apart. I miss her!
4. My dear friend here in USA: She is also from Colombia and she is also all alone in this country, she is like my family here and we try to keep our culture and customs alive. I am fortunate to have her.
5. My father's fast recovery from kidney surgery: They had to remove a kidney and he recovered very fast. I was sad that I could not be there to help him but I am thankful that he didn't need me, that's always a good sign.
6. My mom's health: I am really really thankful that my mom doesn't have any serious condition. Living so far from her is hard and I worry a lot so I am glad she is doing so good.
7. Sophia's curiosity: Is amazing to see her explore around the house, she gets is trouble just like any other kid, I just love that! 
8.  The amazing bloggers in this blog hop: I love reading their TTOT lists.
9. I bought Sophia's big girl's bed at a HUGE discounted price: Originally $230.00 I found it at 79.00 bucks!!!
10. I am thankful for the fact that Sophia wants to get my attention all the time: She is always trying to get  me to play with her and I love it! Her favorite game is when I tickle her, she anticipates my hand getting closer to her belly and cracks up, those moments are priceless.





Thursday, August 22, 2013

One of the best decisions I've ever made.

I went back to work when Sophia was about seven months. I worked full time and Sophia went to a very good daycare also full time. During all this time, I would see my daughter for an hour in the morning and two hours in the evening, and even though Sophia was not growing at the same pace as a typical kid her age, I felt as if I was missing a lot of what my baby was doing.  Early Intervention was going to daycare and I would get the report by mail and sometimes by phone, I couldn't really see how she was doing with them, that was another thing I was missing. Still, I needed to work and things seemed to be working out so we continued like that.  Then Sophia started school, Eric would drop her off at daycare and then the school bus would drive her to school and back to daycare. I would talk to the teachers through the communication book and even though they were very detail-oriented in their notes, I felt like it was somewhat impersonal.
Time went by and  things were fine until Sophia started to cry everyday on the bus, she was on it for 50 minutes each way, and she would cry the whole time, THE WHOLE TIME! Still to this day I don't know why, she couldn't tell me what was bothering her. We tried things like having her favorite toys on the bus, but it didn't work. The teachers and the daycare lady would call me at work everyday telling me that Sophia cried for about 30 minutes after being dropped off.  I was going crazy!
This went on for two weeks! Sophia cried every single day for two weeks! Then I had it! I had to do something. Up until then, I was ok with the fact that I was a working mother but I always thought that I was seeing my daughter's life through school pictures and reports, but this was too much. It was time to do something, so Eric and I talked it through and since he recently had had a promotion at work, we decided that we could afford for me to stay home and really be there for Sophia and actively participate in her education and progress. Best decision ever!
 I have learned a lot about Sophia in the last year, I got to really know her. I have seen first hand what she can do, I have seen all her progress. The teachers and I have a very good relationship and the communication is great and very personal. I drop her off and pick her up from school and the ride is only 5 minutes! I am able to keep up with the good work they do at school. But the best thing of all, Sophia and I have a very special bond and that's worth all the money in the world. I am very thankful and feel so lucky to be able to stay at home with my child, I know not everybody is that fortunate so I try to not take it for granted.
It has been a year since I made the decision of staying at home, I am still a working mom, my job is to be there for my daughter and help her to reach her potential, that's my job and I love it!




Sunday, August 18, 2013

10 things of thankful

Sometimes it's easy to find things you are thankful for, but sometimes its hard and that's when you really need to (like our wonderful TTOT host Lizzi says) dig in and bring out to the surface the good things in your life, it does make a difference in how you feel. This week, it was easy to come up with 10 things, here they are:

Ten Things of Thankful

1. My brother FINALLY got a job after 8 months unemployed! I am so happy for him and his family.
2. My sister in law was very kind and babysat on Saturday so hubby and I could go on a date. Weather was perfect, show was good, dinner delicious and company couldn't be better, oh, and I had a good hair day.
3. We live close enough to a big city like Boston so when we go out there's always shows, sporting events and interesting restaurants to try out.
4. We got invited to a wedding anniversary party and I agreed to bring my famous shredded beef and Colombian rice pudding. I am so thankful that both came out really good and that people at the party seemed to love them.
5. I am thankful that my aunt is such a great artist, she paints, she makes jewelry, hair accessories, purses, and many more things. The main material she uses is orange peel!! That just blows my mind.
Here one of her paintings
6. A good friend of mine went to Colombia and my mom sent me some things with her:  my favorite snack, shoes for Sophia (only in Colombia I can find shoes that fit Sophia's tiny feet), and some of my aunt's art work:


7. I am thankful for Sophia's laugh, some days she is so happy and laughs at every little thing, there's nothing, NOTHING better than seeing her laugh.
8. The beautiful weather we have had the last couple of days.
9. My relationship with my husband, we argue every once in a while like everybody else but I am thankful that we are always able to talk and listen to the other's side and get over it fast. I love him!
10. I am glad the surgery was moved from the 3rd to the 9th because Sophia is going to able to go to school for a week before the procedure, which she is going to love and that will give me some days for myself to get ready.
Have a great week.