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.

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:

 

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.

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!

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:



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.

I've been a hypocrite

Yes, I have. This is not me beating myself up, far from it, it's me being honest and stating a fact.
 I always say that I love Sophia and that I do everything I can for her well being. Well, that's not entirely true, I mean the second part, I do love Sophia but I am not doing everything I can to take care of her.  
I have struggled with my weight my whole life, and even though I have lost some weight, I am still 33 pounds overweight and for a 5'2" woman that is a significant amount. Because of the extra weight, I am on 2 blood pressure medications, which my doctor had reduced the dosage when I lost some weight a couple of years ago. We had to increase it again this year because I gained a few pounds and my blood pressure is high again.
I am not doing anything to lose the weight, if I am not healthy I can't take care of Sophia the way she needs me to. I'm scare to think about what's going to happen to Sophia when I am not around anymore yet I am not doing anything to make sure that it doesn't happen too soon.
Now, I could say that I have too much on my plate, that I don't have the time, that I am too stressed to focus on losing weight, but then I would be hypocrite again. I actually have everything I need to stay in shape and get healthy: I have a treadmill and workout dvds. I have 2 pair of very expensive sneakers, one for running and one for high intensity workouts. I have all the tools to make healthy meals. I even have the time, really, if I didn't spend so much time on pinterest and facebook.

Today I am going to stop being a hypocrite and I'm going to honestly start to do everything to make sure I can take the best care of my daughter. I am making this a public commitment, I need accountability, I need to make this happen and I need support and encouragement. It's going to be a long road to my goal but Sophia deserves to have her mother around for as long as possible and I want to see this smile for many many years:

10 things of thankful

I didn't get to do my list last week not because I didn't have anything to be thankful for, but because I have been doing a lot of much needed organizing around the house. I am still busy but I did't want to skip another week, it's really amazing what coming up with good things in your life to be thankful for does for you, it does really make look at your life in a different way.

So here is my list for this week:

1. Old fashion agricultural fairs: we went to The Bolton Fair this weekend and Sophia was just the happiest kid, she loves looking at the rides, not so much going on them, but she goes crazy just watching them go. She also loved the animals, the pony ride and she went on the fire truck and that was the best thing ever for her:
   

2.  Cuddling with Sophia: I love cuddling with her, but I actually love more the fact that she wants to cuddle        with me. She crawl over and asks me to pick her up and the she puts her head on my chest and is very          content. Seeing her smiling cause she is with her mama is priceless.

3.  Kettle corn: I LOVE kettle corn. I have no self control when it comes to kettle corn, you can't give me a        bag and expect me to share or have left-overs.

4.  Colombian food: I have re-discovered typical foods from my country. I have a list of all the recipes I              want to try. What I've tried so far has come out pretty good:

Shredded meat 

5.  Sophia's ENT doctor:  We want to do a hearing test for Sophia but it needs to be done under anesthesia.      We didn't want to put Sophia under anesthesia only for a test, but because she is having a surgery coming      up and she is going to be asleep anyway I talked to Sophia's ENT  to see if they could do the test the            same day. They don't do tests on this particular day but our doctor did everything to make it happen.

6:   It's easy and cheap to entertain my daughter:  This week Eric and I decided to go to the pet store to show Sophia the fish, she had a great time, she liked the fish, the birds, and the bunnies, but her favorite were the mice! Eek!

7:  Pintrest:  I said before and I'm saying it again, I've got so many different ideas from this site like some of          the Colombian recipes, organizing tips and DIY projects, which some of them I actually do and not just pin.      Like this: labeled containers for the kitchen:

8:   Sophia's seizure medicine:  She has had 2 really scary seizures and they happened right before she        was diagnosed with epilepsy and ever since the medicine the doctor prescribed has, for the most part,          controlled the condition. She still has some episodes a few times a month, which is why we have gone          up in the dosage, but I really think that if it wasn't for this medication Sophia would be having seizures            every day.

9:  My treadmill:  Because of the kettle corn and the Colombian recipes it's really hard to keep in shape,              having a treadmill at home makes it easier to try to stay fit.

10: The beach is only an hour driving from our house. Sophia loves, LOVES going to the beach, she likes          sitting by the shore and seeing the waves come and go, she anticipates them and get really excited. It's really fortunate we live close to the coast:

To hear or not to hear?

That is indeed the question, as in can Sophia hear or not kind of question.

When my daughter was born, she had a routine hearing test and the diagnose was: profound hearing loss on the left ear and moderate on the right. We did a couple of other hearing tests at the clinic where I had to sit with Sophia on my chest for at least an hour, the diagnosis didn't change much. The audiologist prescribed bilateral hearing aids, the right one fits well and she wears it most of the time, whereas the left one doesn't fit well because her ear canal is very small and the hearing aid doesn't stay in for long.

 During the last 4 years, Sophia has taken several hearing tests with the audiologist where they place us in a room and Sophia sits on my lap and they make sounds and noises that come from form left and right of the room, she responds to some of them and it has always been hard to tell how much is attention and how much is hearing loss.

The thing is that, anytime Sophia doesn't have her hearing aids on, she responds to sounds the same way she does when she is wearing them. I turn the TV on and she turns her head, I call out her name and she turns her head, I use the food processor and she notices right away, I hide a toy and turn it on and she looks for it, I whistle and she smiles... the list of examples is long.  How is it possible for somebody with profound and moderate hearing loss to hear these sounds and noises without a hearing aid?

The audiologist suggested to do another ABR test, which is the same test they do on newborns, to make sure what her hearing really is. When kids are older the test is done under anesthesia and because Sophia doesn't do great with that, we didn't want to put her under just for the test. Now that Sophia is having the hip surgery and she is going to be asleep anyways, we can do the test and know for sure what's going on.

The last few weeks, Sophia hasn't been wearing the hearing aids, for some reason she seems bothered by them. I don't know if the volume is too high and just now she is aware of that or what, but I have taken advantage of that and have given Sophia a lot of opportunities to show how well she is able to hear. She hasn't disappointed me! She doesn't always respond to the source of sound but I really think that is more for lack of attention or lack of interest more than lack of hearing. 

The audiologist is a little skeptical but I am not making this up and I really hope this test we are doing in September shows what I see everyday and that somehow she was misdiagnosed when she was a newborn and that she doesn't need hearing aids. We will wait and see, in the mean time, check out this killer smile:

I can speak Sophianese

The fact that Sophia doesn't say words doesn't mean she doesn't have a language. It took time but I think I'm pretty good at interpreting what she is trying to say. I know when she is playing with the mirror or when she is playing with a hanging toy. I know (most of the time) when she is hungry or when she is tired or when she is uncomfortable. I know all of this because each sounds different, there's a different tone, a different length to it. 

Of course, these are the basics, sort of like Basic Sophianese, maybe Intermediate. I'm still working on more complex things like finding out the exact reason why she is uncomfortable or upset, or the details on why she is laughing so loud. It's a work in process and I hope... no, I will graduate and I will be fluent in Sophianese.

We have tried sign language but Sophia doesn't imitate much, we are not sure she understands the few signs we keep using. I tried the regular icons for communication boards but they don't mean much to her, she does much better with real pictures. The teachers and I have been working on presenting two pictures for Sophia to choose from: two toys or two foods which she understands and sometimes she even goes and looks for the toy in the picture she chose. They show her a picture of my car when it's time to go home and she looks at the door. There's a lot of potential, I'm sure there's a lot of things in that little head of hers and I can't wait to hear what she has to say, we just need a little help and time.

The school approved an iPad and an AAC app for Sophia, There was an evaluation to see what app was the best fit. Unfortunately, it was the end of the school year and for budgeting reasons we didn't get the iPad yet but they assured me it was going to be available for Sophia to use when school starts. In the meantime, I have been working with two words, ALL DONE and MORE, the same words we are starting with when we get the iPad. Once she gets the idea and understands these two choices we can add more.

It's a long process and it requires a lot of patience and dedication but we are getting there, I am getting there, and whether it's with sounds, pictures, an AAC app or actual words, I WILL be fluent in my daughter's language.