Picking up the pieces

I have been kind of quiet lately and there's several reasons for it. We have been through a lot the last few months, lots of things have happened, some good and some not so good. First of all, I have to say that we had a fun summer! We went on a few road trips and Sophia ended up being amazing during the long rides, laughing, babbling a lot, sleeping very good at the hotels and enjoying herself, making our time together really wonderful. Sophia had lots of fun going to the beach, the zoo, going on long walks and to my surprise, she really likes bowling alleys which makes daddy very happy. It was a fun and busy summer and we have good memories and great pictures to show for it.
In my last post I talked about how Sophia had to have a feeding tube placed in her tummy. She had a peg tube in the beginning and then we switched to a low profile button. After the healing  process, a minor infection and the occasional granulation tissue, we can finally say that getting the feeding tube was one of the best decisions we could've done for our daughter. The amount of liquids we can get in her is significantly higher than what she could ever take by mouth...ever! The tube has been especially helpful when it comes to administering new medicines and new doses. I am so glad we did it!
Then, when everything seemed to calm down, Sophia started having a lot of what looked like tremors. Her neurologist added a new medicine because we had already reached the higher dose of the one she was on for about 4 years. But the tremors continued and so we kept increasing the dose of the new med. They became so bad that Sophia kept losing her balance when standing and also when sitting. The new medicine was obviously not helping and even making things worse. We did a 48 hour EEG back in July but it didn't really show anything. With the new symptoms, the doctor wanted to do another EEG but this time at the hospital. We were supposed to be there for 48 hours and we ended up staying for a week! After the first night, the doctor came in the room and said that Sophia's EEG looked really bad, especially at night. During the waking hours, the tremors that we were seeing were actually parts of seizures. At night things were a lot worse, as soon as she closed her eyes the epileptic activity in her brain began and went on non stop all night long. The doctor stopped one of the meds and added 2, she decided to be aggressive because the case was serious and we were already in the hospital where they could monitor her closely. There was no significant change in the EEG so we added one more medication to the list. The doctor also wanted to do a MRI to make sure we were not dealing with something else. Sophia was extremely drowsy sleeping all night and most of the day waking up just to eat. One morning, Sophia was napping and she looked so calm and peaceful that even with all the wires and the head wrap she looked like a beautiful angel laying there. I was looking at her when suddenly she started seizing, the nurses and doctors came running but the seizure had stopped. It lasted only 10 seconds, or so I thought! The neurologist came that night and told us that what I saw were the last 10 seconds of a 12 minute seizure she was having while asleep. 12 minutes!!... Asleep!! I couldn't wrap my mind around that! The doctor was concerned but confident we were on the right path but we needed to be a little more aggressive so we continued to adjust the doses until the EEG finally showed a significant change the doctor was comfortable with, Sophia was still very sleepy but we were able to come home and kept monitoring her closely here.
The MRI showed a few abnormalities that were discussed with a neurosurgeon, there's some tissue and some cysts where there should be none but fortunately they are not causing problems and we don't need to do anything about it right now and hopefully ever.
So we are home, Sophia is still not back 100% but definitely getting there. Still more sleepy and taking naps, which it's so not like her, but the doctor said it takes weeks for her body to get used to the medications. There's no more tremors and she is sitting up straight with no problem, we are going to repeat the EEG in a couple of weeks to make sure the meds are controlling the seizures at night, hopefully they are and hopefully this is it for a while.
Sophia is finally back to school after three weeks and slowly getting back to her routine. During those three weeks all my attention and energy were focused on getting Sophia on the right medication to control her seizures, but now that I am home I can feel the weight of those three weeks on my shoulders. Sophia is at school being happy and taken care of and I can finally deal with the sadness, stress and anger for what our precious daughter had to go through. Now, I can let myself feel what I need to feel and then pick up the pieces and be strong again, for Sophia, for my wonderful husband and for myself.

The hard part is over, or is it?

The surgery is over, the dreaded days at the hospital are over too. The procedure went well and as we had anticipated, Sophia has trouble with nausea for a couple of days after. Even though I know the nausea is pretty typical for her after every surgery, it never gets easier to see her struggling with it. But we are home now and that's good. It has been overwhelming and stressful, figuring it all out from cleaning and taking care of the little wound (which is not fun for Sophia and rightly so), to working our way up to the amount of fluids that the doctor gave us trying to find the best schedule, the best position, the best amount of fluid at a time, the best rate to give it to her... It's a lot! There's a moment, after the first attempt to feed Sophia at home, I was so clumsy, Sophia was crying, I didn't have the things I needed ready and i thought I was not going to be able to do it. I wanted to cry... and I did. I am so fortunate to have a man by my side like Eric, he saw me like that and took Sophia, calmed her down and told her that her mama is going to take care of her, told her that everything is going to be ok. He gave me space to cry and calm down, and then told me that it was natural to feel that way and that it was going to get better.
 It's a learning process for us and for Sophia. She is now letting me maneuver the tube better and so the feedings are not as stressful as they were. We still have a long way to go but I hope that the healing process progresses at a reasonable pace. The little opening is still fresh and needs to be kept as dry as possible. The cleaning is painful for me to do because is obviously painful for her and I can't stand seeing her so uncomfortable, but it needs to be done. We saw our pediatrician and he said it looks ok, but he wants to prevent infection so he asked me to put some antibacterial cream on it. What makes me feel better is that there's a couple of nurses in Sophia's classroom, they have lots of experience with feeding tubes and I'm sure they have ideas on how to make this more bearable for my little girl.
The first day at home I was wondering if we did the right thing,  and I have to say that despite the struggles I think in the long run it's going to be so worth it. Now we realized how little fluid Sophia was really taking! We are definitely seeing  a lot more wet diapers and that's actually a very good thing. Also having the option of giving her bolus feedings as needed, takes the pressure off of having to push every single bite to make sure she eats the calories she needs, and now we can concentrate on the fine motor skills and independence. So with that in mind, I need to take a deep breath and deal with the healing part of this process knowing that the benefits will definitely compensate the struggles we went through to get there.

What a strong girl Sophia is!

It's not her, it's me.

So things are happening really fast. The feeding tube it's not only a fact but it's going to be placed in Sophia's belly this coming Tuesday! I only had one week to be as prepared as I can possibly be, I read the brochures they gave me, I joined a Facebook group and asked questions. I even ordered some very cute pads to put in between her belly and the g button. I also got these nice containers to store all the medical supplies they are going to give me to take care of her belly while it heals. I am also trying to prepare mentally for the few days following the surgery. They said she will be in the hospital for three days and if Sophia follows the pattern from past interventions, it could be one to two days more. I want to think that she is older so she might tolerate the surgery better and might not need oxygen when she is recovering. I am anxious about seeing her in pain, uncomfortable or frustrated and me trying to guess exactly what's wrong and not being able to calm her down.
The truth is Sophia has shown me that she is strong and resilient, and she's capable of adapting to any situation and making the best of it. I need to remember that my fears are not the same as hers. About two years ago she had her third hip surgery and she was in a full body cast for a month. I was expecting the worse four weeks, she had been moving so much lately and I thought she was going to be miserable and frustrated as she couldn't do the things she loves the most. But I was wrong! Sophia was as happy as always, she would laugh for hours just sitting there with a balloon or watching her favorites shows. Same thing happened with a test we had to do this week before the surgery, it was a swallow test where she had to drink a solution with barium and then be in different positions. I was dreading doing this test because I thought Sophia was going to be cranky for not having breakfast that morning, I also thought she was going to give us a really hard time opening her mouth for the drink and she usually doesn't like being held in a certain position for a long period of time. So there we went and I was so so wrong! Sophia had a blast! She was laughing the whole time and drank the barium when she needed to and changed positions with no problem at all. Everybody in the radiology department was in love with her and her smile.
One more example of how Sophia makes the best of everything is our trip to Pennsylvania this past weekend. It was seven hours driving each way! We thought she was going to be mad and grumpy sitting in her car seat for so long but she was, once again, as happy as she could be. Even on our way home which took longer and kept her up two hours past her bed time. She had an awesome time!

So it's not her, it's me who has all these fears and I know that it's normal for a mother to feel that way before her kid is going to have surgery but I have to recognize that Sophia being the way she is makes things so much easier. She'll probably be laughing and having fun while she is in the hospital and she'll be back to her normal routine of being the happiest person I ever know in no time.

So a feeding tube it is.

In a matter of eight days I went from "I can't believe we have to put a little hole in my baby's belly" to "Can we get the gtube today please?!" One of the several reasons why we made the decision to get a feeding tube, is that lately Sophia is not eating like she used to and she is choking drinking her water more often. This week has been especially hard, it's as if Sophia heard about the tube and gave up eating and drinking! She opens her mouth when I offer her water but then lets everything dribble out. Eating solids is not going great either, she doesn't want to eat or sometimes I have to puree the food,which was something that we had had some progress with as I was using just the fork to smash her meals instead of the food processor.
It's so frustrating for me and I am sure it is for Sophia. When she doesn't swallow the water, or when she coughs a lot with it or when she doesn't open her mouth for the spoon or even when she does but gags on it, I worry so much and all I can think is about dehydration, kidney stones and that she is not getting enough nutrients, nutrients she needs to stay healthy and keep working on reaching her potential. I start pushing the fluid/solid into her and I feel like I am in her face all day long and that of course she doesn't like, and  very rightly so.
Same thing with her medicine, which we give her three times a day and sometimes she doesn't swallow the whole dose down. That's why I found myself several times this week wishing we were getting the tube sooner than what they told me the process will take. Now I totally understand why this is the best thing for all of us. It will make everything so much easier and we'll be able to concentrate on the motor skills without the pressure and the worry.
One thing I feel good about is that I found this Facebook group that gives support to parents of kids with feeding tubes. I "liked" it and posted a question basically asking for tips and the response was overwhelming! I got 71 messages!! I took the time to read them and to reply to them all, every one of them agree that it's scary in the beginning but it becomes second nature pretty fast, and also (and this is very good to know) all of them say that getting a tube for their kids  was the best decision they could have made. Reading those comments and words of support made me feel like I am not alone and more importantly that I can do this!
So now I can't wait for the surgery and the first few weeks after that to go by fast, so we can have one less thing to worry about.

Finding something positive in the middle of the chaos

To pick up where I left off in my last post, Sophia's seizures and tremors are gone! It seems like her body just needed some time to assimilate the new doses and now the combination of the meds are doing their job with no obvious side effects. The seizures could come back at anytime but I promised myself I won't stress about it until it happens, if it does at all. I want to enjoy my beautiful girl when she does feel fine and laugh with her without wondering whether that moment is going to be interrupted by an episode.
But there's something else happening, Sophia has always had a hard time drinking liquids. I have bought all sorts of cups and sippy cups and the only one that works (kind of) is a 99 cents one from walmart. It has a straw and all I have to do is squeeze  the fluid in her mouth and she drinks it. But she has to drink very slowly, little squirts at a time otherwise she starts coughing so by the end of the day the total amount she takes is not great. Lately it seems like she is coughing more frequently and there are several problems that could result from that: apart from the obvious dehydration, there's the risk of aspiration resulting in pneumonia. Also constipation, Sophia has been doing very good as far as that but when she was not it was pretty bad. And finally, Sophia is at risk of developing kidney stones because she has calcifications in her kidneys (which we have been monitoring for the last two years and they stay stable). Now that we added this new medicine for her seizures, we increased that risk even more because one of its side effects is development of kidney stones. The solution? A lot of fluids. The nephrologist asked me to give Sophia at least three of the bottles she uses a day, but on a great day she drinks one! And that day I feel like I was in her face all day pushing the water down her throat. That doctor and her pediatrician recommended at some point in the past to put a feeding tube on Sophia's belly. I said "no" because I was determined and convinced that I could find the way to get Sophia to drink enough fluids to avoid constipation and the calcifications from becoming a problem. But now, with the increased risk and the coughing I had to give the feeding tube more consideration. I thought really hard about it and asked Sophia's teacher who has a lot of experience in this field and who I knew would not push me into taking any decision until I was ready, and she gave me a lot of good information and I realized that it's not as bad as I thought. I talked to Eric about what I had learned and we considered the advantages and what we would be avoiding and decided that it's what our daughter needs right now. I guess I was feeling like I had failed Sophia by not giving her enough water, but I realized that I did my best but it wasn't enough and she needs a little extra help. So we started the process and have an appointment with a doctor this Monday so we should have a plan soon.
It has been pretty stressful few weeks for us  between making sure that the seizures were under control and making the decision about the feeding tube and I was getting a little overwhelmed, but I decided that I needed to do something meaningful for Sophia, for us. Something to keep me from falling into a sad hole worrying about possible problems or wondering why my baby has to deal with all this. So I decided to register for a walk for epilepsy. It's my very first walk ever, it's also the first time I raise funds for any cause and I thought this one was a pretty good one to start. So next October I will be wearing purple and walking three miles and I will see the face of my daughter at the end smiling so proud of her mama.

I would walk thousands of miles to see this smile.

By the way, here is the link for my fundraising page in case you are interested in sponsoring me:

http://www.firstgiving.com/fundraiser/natalia-frost/ConcordWalk2015

Are two medicines going to be enough?

A few weeks ago, I wrote about Sophia's epilepsy and how she maxed the medicine she has been on for about 4 years. Every year we needed to go up a bit until we can not give her anymore and had to add a new medicine because she started having small absent seizures. The neurologist had a list of medication we could try and out of two of her favorite to try, we decided to start with topiramate (topamax) because the other one tends to lower the platelet count and it turns out Sophia's is already on the low side. The topiramate could affect the kidneys but we checked with our nephrologist and she gave us the ok. The plan was to start with a low dose and increase every week, but after the very first day on it Sophia seemed to be seizure free. I talked to the doctor and we agreed on stopping at one pill a day. I was so happy that things had worked out fine, it was easy and fast. Well, not for long, After 4 weeks of being on one low dose Sophia started having absent seizures again, we called the doctor and we went up to one pill in the morning and one at night which worked for a week. Then we had to increase the dose to one pill in the morning and two at night because she had a full blown seizure. Eric and I started to check the clock and by 3.5 minutes I was thinking about getting the emergency medicine ready (which I am so grateful we have never used) when the seizure stopped. It's amazing how 4 minutes seem like 4 years when you see your child struggling. What kept me calm during the whole thing (calm enough to take a video so I can show the doctor) is the fact that this time Sophia was breathing the whole time. 5 years ago when she was diagnosed and she had that horrible seizure, one of the scariest things I have ever witnessed! Sophia was turning blue and she was drooling uncontrollably. One horrible night for sure!
Now we are up to 4 pills a day! two in the am and two in the pm. Last Sunday Sophia had 3 short seizures in a short period of time, and these are full blown seizures with her eyes going back a little bit and twitching  her leg and arm. They lasted about 2 minutes each but thankfully she was breathing the whole time. So I called the doctor, again, and she asked me to increase the dose once more. Last week Sophia had a 48 hour EEG test and she didn't have any episodes during the length of the test, (it figures) but I hope they are able to see what's going in that brain of hers.

There's one more thing going on right now: Sophia is having tremors. They started about the same time she started the seizures again, she shakes, leans to the right and can't keep her balance and she has fallen several times when sitting and also when standing. We even have to hold her sometimes when we are feeding her because she can't keep her head up. Some days these tremors are very mild but other days they are really bad. I have reported this to the doctor every time I talked to her and she keeps increasing the dosage, she hasn't said that this is a secondary effect. I am not so sure about that anymore, I'm not sure if maybe I haven't explained well what the tremors looks like so I took a video of a seizure and another of the tremors in hopes that the doctor can see and be sure that we are doing the right thing by increasing the medicine so fast.
I want to get the seizures under control of course, but if these tremors are a consequence of the medicine we are using it'd be too bad to see my baby girl not being able to practice walking and standing on her own because she can't keep her balance. It's so hard to not know what the right thing to do is.
So this is where we are right now, I hope the doctor watches the videos soon and tells me what the next step is. Fortunately this neurologist is very understanding and listens to my concerns, she seems to have Sophia's well being as a priority and with that in mind I'm hopeful that we are going to find a solution soon.

I hate to see my baby girl going through this, but the falls from losing her balance and the exhaustion she seems to feel after a seizure haven't stopped the smile she always has on her face, like her teacher said: "nothing gets this girl down!" True that!

One of those days...

It's one of those days that come around every couple of years in which there's a black cloud over me and I can't help feeling sad and negative. Fortunately the cloud doesn't show up too often and it usually stays one or two days. But when it does come I go through all the stages I went through when I learned my baby had a chromosomal disorder. I'm sad for myself, then I feel guilty for feeling sad and then I'm sad again. I'm also angry that my baby has to work so hard to do everything and I wonder, "why me?" I'm so scared about our future when Sophia is a 30 year old woman, are we going to be feeding her still? Changing her diaper? Are we even going to be here at all? Who's going to take care of her? Who is going to love her?? Then I feel sad and guilty and angry again...

I knew the cloud was coming, I think I started feeling it after Sophia's birthday, she is 7 now and the difference with the rest of kids her age is very noticeable. Everywhere I go with Sophia, people notice how cute she is and their first reaction is to ask how old she is. Even before I answer I know what their reaction is going to be: "7? wow! she is so small!". I usually can deal with the question and accept that it's a very natural reaction to something that is different from what you are used to, but when the cloud is here, that question and especially the response to my answer hurt. Most of the time I honestly focus on her strengths and progress, but when the cloud is over me I see her struggles more and it hurts. The fact that her seizures are back and that we had to increase the new medicine to three times a day hasn't helped at all. I see her struggling to keep her balance and having tremors due to something I assume is neurological and it hurts. I don't know whether she realizes that she is having a hard time or not because she can't tell me yet, and that also hurts. I'm not sure what triggers these dark two days but I do know that when they come I need to accept them, feel them and move on. After a very good cry I start to see the light again, I see how far she has come and the huge progress she has made. I see the many beautiful days we have enjoyed together and look forward to many more.

And so the cloud is gone and won't be back for at least two years. In the meantime, we will deal with whatever we have to, whatever it is we will be okay. All I have to do is look at Sophia smiling at me and hugging me and I know that whatever our future is, we'll adapt and get through it like we always do.

A tiny superhero called Sophia.

The wonderful Robyn from Tinysuperheroes wrote a beautiful post about my Super Sophia. Tinysuperheroes is (in the founders's own words:) "a tiny cape company with a SUPER BIG mission to Empower extraordinary kids who exemplify strength and determination as they overcome illness or disability". I nominated Sophia and some amazing kids from Missouri ran a fundraiser to sponsor capes for Sophia and a few other kids. Sophia loves her cape! 

Here is the post Robyn wrote. Check it out!
http://www.tinysuperheroes.com/tinysuperheroes/super-sophia

I love you da-da!

Sophia can't talk but she can say da-da. It's pretty much the only word she says and she says it all the time and I'm not surprised, Sophia loves her daddy. She may not say it with words but I can tell by the way she lights up when Eric gets home from work and by the way she loves to rub his beard and read a bed time story sitting on his lap every night. When I do her hair or trim her nails or do anything that she is not thrilled about, she looks for her da-da and he comes to the rescue. They have a very special bond and that's evident in the way they look at each other, no need for words to realize they love each other.
It's father's day and I want to take the opportunity to acknowledge and recognized the amazing job that Eric does as a husband and father. He is my main source of support and strength to do my job as Sophia's mom the best I can. He is the only one who can truly understand how I feel when things don't go well for our daughter and always has the right words to make me feel better. We don't always agree but he validates my concerns and helps me make the best decisions for Sophia's well being.
He, just like me, had to go through the grief of losing the idea of having a typical baby and had to learn to deal with the challenges of having a kid with different needs. It hasn't been easy for him to see his daughter struggle and his wife cry but he is strong for the three of us and always finds the right words to make me feel safe, protected and loved. I am usually the one who is praised for how good Sophia is doing but I have to say that I couldn't do what I do if I didn't have such an amazing man by my side.
Yes, Sophia loves her da-da and I know without a shadow of a doubt that he loves her back just the way she is and that he is going to be there for her, protecting, supporting her and doing everything he can to make sure she has the best life.

6/15/08, the date you changed my world.

"...In my daughter's eyes I am a hero

I am strong and wise and I know no fear

But the truth is plain to see

she was sent to rescue me

I see who I want to be

    in my daughter's eyes..."  

Martina Mcbride.

Seven years ago I was in a hospital bed, 37 weeks pregnant and getting ready to meet the person that was going to change my life forever. I already knew that the baby I was carrying was a little different from the one I had pictured before the diagnosis, but when I saw this tiny little creature for the first time I didn't notice what was different,  all I could see was that she was nothing but perfect.

Sophia, you arrived into the world on a father's day, stating from the very beginning that you are a true daddy's girl. With eyes wide open you started to explore everything around you and then your eyes met mine and I knew right there that we were going to be ok. You have gone through a lot in the past seven years, everything from surgeries, stays in the ICU, breathing problems and seizures. But that hasn't stopped your determination to be the happiest kid in the world, every single time we go through a rough patch you start smiling and being the happy girl that you are and that makes everything a lot better.
Today as we are getting things ready for your birthday party, I can't help but think about the resilient and determined person that you have become and that makes my heart fill up with pride to be your mother. You have come a long way my love, I believe you are going to get far and you can count on me to help you get there.
I truly believe that you came to my life to show me the kind of person I was meant to be, and I don't want to be anybody else but your mommy. It has been seven years since I saw you for the first time and today, on your birthday, I look at you and I know that I would not change anything about you. You are special and unique, not because of your diagnosis but because of the amazing, fun and sweet personality that you have. I've learned a lot from you and I am looking forward to see what else you are capable of and make no mistake baby girl, I would be there with you every step of the way loving you, supporting you and fighting the world for you.

I love you to the moon and back Sophia!

I'm still not used to the stares (part 2)

When Sophia was 5 years old, I wrote a post about kids staring at Sophia, you can read it here. Today, I think somewhat differently than I did two years ago. I've learned that when kids stare at Sophia they are mostly curious, but then after the initial surprise of seeing someone different from them, they are interested in interacting with her and playing together. I am better at explaining to them why Sophia makes loud noises or why she uses a walker to stroll around the mall, and so they and I can have a little chat and then they go their way. It's actually nice (most of the time, anyway).
In that post from two years ago, I said I was used to adult stares. At that time Sophia was five and she was still very little and the difference was not too obvious from a typical kid, so most of the people used to stare at her noticing how cute and sweet she was, but now at seven the difference is more noticeable and the use of her walker and her communication book (the PODD) make it obvious that she has special needs. Many people still look at her and even say it out loud: "Oh she is adorable", "she is so sweet", "she is so cute" and I can see they genuinely think that, and it's nice to hear those words. But there's also a bunch of people that look at her using her walker and they look at us and I can see the pity look and the "oh poor you having to deal with a kid with special needs" thought going through their minds. I sometimes choose to ignore the look, but other times all I want is to tell them about us and make them understand that we are ok. I want to tell them that yes, it has been challenging but it's not horrible. Sometimes we wish things were not so difficult for Sophia but she is making progress everyday. We do what most parents do for their children, we make sure she has what she needs, we take care of her when she is sick and rejoice when she gets better without having to go to the hospital.
Yes, we have more doctors than I can count with one hand but they are very good doctors and they help us take care of Sophia.
Yes, Sophia has a lot therapists and teachers and care givers, but we have met amazing people because of it.
Yes, it has been very hard at times and we have cried but we have also laughed. I want to tell them that Sophia is a very happy kid, that her laugh makes everything better, that there's no way that we can think of Sophia and not smile (really! we have tried!).
We also go to the park or the beach and have fun. We take pictures with Santa and watch Elmo and Barney on demand. We also go on trips and we go out to dinner (quite often) and we laugh a lot.
I want them to know that Sophia is sweet and fun and mysterious and amazing and she brings a lot more happiness than sadness to our lives. We are a happy family who has some struggles, maybe a different kind of struggles but just like any other family we try to deal with them the best we can.

I dare you to look at that face and not smile!

How nice when things work out.

Sometimes I feel like I'm always expecting things go wrong for us or like everything is difficult for us, and when they do work out it almost feels unreal. Sophia's doctor prescribed a new medicine to pair with the one she was already taking for her seizures, you can read about why we had to add one here. We picked it up on Saturday and gave it to Sophia that night. She had two mild seizures that day, they weren't full blown seizures but definitely the strongest and longest she had had in the last two weeks. That showed me that the seizures were going to get worse very fast. I was scared because the doctor had two medicines she wanted to try but each one had their side effects, the first one tends to lower the platelets and Sophia's last blood work showed her platelet count is already below normal, so that medicine is out of the question. The second one could cause kidney stones and Sophia has calcifications in her kidneys already so I thought that medicine was not going to work either. The neurologist talked to Sophia's nephrologist and she says that Sophia's kidney function is good enough to try this med. I was surprised because I was expecting a "it's a no" from that doctor, and the alternative medicines to try had worse side effects and I didn't want to even think about.
So we started on Saturday night. I am so happy to be able to say that Sophia hasn't had any sign of seizure activity ever since! We were supposed to increase the dosage every week until we found the perfect one but I think once a day is all Sophia needs. I keep looking at her trying to find anything seizure like in her face, her arms, her legs or her eyes, and I can't find any suspicious movement. So it worked! She just needed a little help from this medicine and it worked from the very first day! It's been almost a week and it still feels hard to believe it was that easy, but it was. So now I can go to sleep without looking at her on the monitor to make sure she is ok every time I hear her moving. I can let her stand in front of her play kitchen without the fear that she is going to fall if she unstable from a seizure. She can use her walker again and go as fast as she usually goes. I can go back to enjoying all the amazing things she does everyday... at least until she needs a little adjustment in the meds again but we'll cross that bridge when we get there, just like we always do.

Watching the Memorial Day parade.

So cool!

One medicine is not enough.

One of the conditions that Sophia has is epilepsy. We don't know whether it is related to her chromosomal disorder or not since there's no documentation of any other person with the same exact syndrome. But she does have it nevertheless. Sophia was diagnosed about 5 years ago and you can read here about it. She has been on the same medicine since that trip to the ER and it has worked well but we do need to increase the dose every year when she gets a little older and her body needs a little more of the med to control the seizures. I usually start noticing it's time to go up a bit when Sophia starts twitching or having partial seizures when she has no control of her saliva and although she is still there, I can see it in her eyes that something is wrong. This lasts only a few seconds at a time and then it goes away, but it makes me very nervous because I wonder how many times it happens when I am not looking and that's a very scary thing to think about. So, then we contact her neurologist and he increases the dosage and we go another year seizure free.
Last year Sophia got to the highest dosage that she can get from that medicine and she is taking it three times a day. When we saw the doctor a few months ago and she said that if Sophia had new symptoms we would need to add a new medicine on top of the one she is taking right now. Well, that moment is here. For two weeks now, Sophia has been twitching a bit which is the first sign that she needs a medicine adjustment, but there is a new symptom. Sophia is having a lot of tremors, lots! She shakes when she is sitting and tends to lean to the left and it seems as if she has no control of it. Sometimes it's so bad that I have to hold her hand when I'm feeding her so she doesn't fall of the chair. She has tipped over a few times when she is sitting and other few she has been able to catch herself. Sometimes she looks like she is spacing out but is able to come back as soon as I call her name. I called to move up the appointment we had for November with the neurologist, but after seeing the symptoms more frequent I called again and talked and asked to talk to the doctor and she agreed she needed to see Sophia a lot sooner. She asked me to take videos and Sophia had a couple of these episodes in the doctor's office so the doctor could see what we are dealing with. Her conclusion? Sophia has been having partial seizures and her medicine is preventing her from having full blown ones. She said that we could do a 48 hour EEG if we wanted to make sure but it's very likely that this is what it is, or we could go ahead and start a second medicine. I decided not to do the test. Sophia has had two EEGs and the results are always the same, she has a lot of abnormal activity in her brain, we know that. Sophia has epilepsy, we know that. What I want is to stop any type of seizure and if we need a second medicine to do that, then be it.
We will work our way up to the right dose of the new medication for Sophia, I will watch for any side effects and will address any problem that may appear, but most of all I will try my best to avoid a big seizure like the one that sent us to the ER 5 years ago. I don't want to repeat that experience ever again.

My warrior.

A very smooth IEP meeting.

It's that time of the year, time to review how Sophia, her teachers, her therapists and her parents did this year.  I have to say that we all did pretty good! Sophia made nice gains in every area: Physical therapy is going great, she is very confident walking with her walker and is getting better at steering it. She is also improving at going up and down a ramp, which is great since we got approved for a handicap parking permit and Sophia will be able to practice her walking everywhere we go. Both, the orthopedist and the PT see her walking independently some day, and I do too.
In the area of fine motor skills, the progress is a little less extensive than the physical but it's still progress. Sophia now tries to place a wooden piece of a puzzle in the right place instead of just dropping it but still needs a lot of assistance to do it. We are going to work on helping her to use her fingers to grasp objects so she can use a spoon to feed herself and pick up a bottle to get a drink.
As far as communication goes, the process has been incredible! The communication system we use is called PODD and you can read about it here. Sophia now accepts and understands why the PODD is in her personal space, before it seemed to be in her way and she would swipe it off the table. She smiles to show us that we got what she wants, like more food, a toy, a tv show or that she needs a diaper change. She is not pointing at pictures on the book yet but we are labeling gestures and sounds that she makes with a symbol on the book to show her that we understood what she is trying to say and to show her that she also can use it to say what she has in mind. It's a slow process but we knew that, we are all working together modeling all the time and are confident that her expressive language will someday catch up with the receptive.
The social part is the best! Sophia is loved by everyone in the school, from the staff to her classmates and kids from other grades. Sophia loves all the attention she get from these kids at lunch and at recess and if for some reason there's a change in the schedule and she can't go to the cafeteria or the playground, she makes sure to let the teachers know that she is not happy about it. I'm told that the 1st and 2nd graders form a line at lunch time and wait for their turn to get the chance to say they love Sophia using the PODD! I am so moved by this! Kids have the sweetest heart.
So the meeting went very well, we all talked about what we need to do to help Sophia reach her goals for next year, I thought everything they are already doing plus the new plan are reasonable and I am confident that they will listen to me should I have any concern or question and we'll work together because I know we all have one purpose in common: to help Sophia to reach her potential.

Oh yeah, and she lost that front tooth, finally!

Happy mother's day to me.

I never doubted I wanted to become a mother, I knew that could potentially be a good mother having my wonderful mom's example to follow. I envisioned celebrating mother's day with a nice breakfast in bed made by my kid(s) and presents like beautiful drawings and homemade gifts. I imagined having mom-daughter dates getting our nails done and having ice cream after. I thought I would have to have the "talk" with my child someday and I imagined approving or disapproving girlfriends and boyfriends. I was excited about all the things that make a mother a mother, at least what I thought those things were at the time, things like recitals, going to watch them play sports or an instrument. I even imagined the not so fun things like slamming doors and rolling eyes.

But destiny had a different idea of the kind of mother I would be. I knew there was a different and difficult road ahead of us since I heard at 34 weeks of pregnancy that something was going on with the baby I was expecting, you can read about it here.
It has been hard to learn to be the kind of mother Sophia needs and deserves, she has taught me to not take things for granted and to appreciate every single thing she does, to celebrate anything and everything from a the fact that she is making a different sound to seeing her going down the slide so independently. I am learning to be patient and respect Sophia's timeline, she will do it when she is ready to do it. I am enjoying hearing everywhere we go that my daughter is the sweetest girl they have seen. Sophia has taught me to focus on the things that she can do instead of the ones she can't. I have learned that I can still do things that other moms do, maybe I have to modify them a little to adjust them to our situation but still enjoy them.

So this year I decided to celebrate me! I love being Sophia's mom because being Sophia's mother has been the most wonderful experience I have ever had. I am a better person because of her and I have to recognize that she is progressing and she is who she is partly because I am doing doing something right in being the mother that I was meant to be. Happy mother's day to me!

Quality truly beats quantity.

I am very grateful for the family I have. There's over 2 thousand miles between me and them and we have been that way for about 11 years. Sophia and I go to Colombia every year to visit and the 3 weeks we spend together are filled with lots of hugs, giggles, lots of support and pure love.
Sophia feels very comfortable right away, and I don't blame her because I get very comfortable too. As soon as we get there, my mom takes over my duties, she does this because she had been waiting a whole year to be able to feed, hug, kiss and play with her granddaughter and also because she wants to give me a break and the chance to do non-mom things. My brothers, my sister in law and my niece and nephew interact with Sophia as if we had never left, and she responds to that attention in a very positive way. Little things like when they take the time in the morning before they go to work(even though they are already late for work) to give her a kiss and make her laugh, have a great impact on her development.
Don't get me wrong, Sophia get lots of attention and support here from her teachers and us but the kind of love that she gets during our visit to Colombia is incredible! Our life is here in the states, here is where we can get all the medical and educational support that Sophia needs to reach her potential. Here is where Sophia's dad is and this is our home and I love my life here. I wish we could have everything in one place but that's not possible, so I try to make the best of what we do have when we have it; and in those 28 days we made up for the 11 months we can't be together.

Here is a couple of videos of Sophia having quality time with the family:

Batteries recharched

So we are home. The 28 days Sophia and I spent visiting my family in Colombia were nothing less than amazing and here is why:

I got to see my parents have quality time with their granddaughter:

Sophia got to play with her cousins and get some loving from her uncles and aunt. 

I saw my friends from high school and got to dance salsa all night long. 

I saw my father perform in two plays and applauded with pride at the end.

I got spoiled by my mom with a cup of the best coffee every morning in bed.

I saw my favorite rock band live and got seats in the front row!

I got to enjoy 85 degrees weather for two weeks.

Sophia spent hours in the pool everyday while I watched her from a very comfy hammock.

Sophia created a special friendship with my aunt's dog who wouldn't go anywhere without Sophia.

I gained 2 lbs, and it is ok because it's due to eating delicious Colombian typical foods and they are worth it. 

My best friend and I got to spend some time together and it was like I never left.

I got to paint with my aunt who is a very talented artist and learned a lot:

Sophia did get sick but it lasted only a couple of hours and she bounced back really fast!

And the best of all is that Sophia did a couple of amazing things while she was there, like discovering that she likes the slide and I discovered that she can do it all by herself:

Sophia is a veteran traveler.

Every year since Sophia turned one she and I  go to Colombia to visit my family and this year will be our fifth time. It's a lot work and a lot of planning, we set up appointments with all her doctors including a travel clinic doctor who gives us medication and vaccines. I got letters from her neurologist explaining why I need to have Sophia's seizure medication with me on the plane and also from her pediatrician saying that Sophia needs to get IV fluids should she vomit for more than 5 hours to avoid dehydration. I am taking the nebulizer with me just in case. We are spraying her clothes with a bug repellent (a really good one that last up to 6 washes!). I also have all kinds of ointments and lotions for anything and everything. I got traveler insurance just in case. Sophia has gotten sick almost every time we go down there and those experiences have taught me to be a little more prepared and if she gets sick this time (I really hope she doesn't), I feel like I have the support and the means to deal with it.

 Yes, it's a lot of work but it's all worth it! It's three weeks of being loved and taken care of by people that would do anything to compensate for our lack of time together. During those three weeks Sophia grows significantly, I don't know what it is but she always comes back doing something new and it's amazing. I get to recharge batteries, eat my favorite food, drink the best coffee in the world and dance salsa the way only Colombians know how. Sophia gets quality time with her cousins, uncles, aunt and grandparents. So yes, it's worth all the planing and preparation. I love my life here with my husband, my friends and Sophia's amazing teachers and doctors but my daughter and I need and deserve this.

We will miss daddy, of course, but he gets to eat whatever he wants during our absence, it's a win win!

Who wouldn't want to spend at least three weeks looking at this smile?

Little Miss Independent.

When we learned about Sophia's diagnosis (you can read about it here ), we faced a whole world of uncertainties. Not only the baby we were expecting had a syndrome but it was an unique one. Since there was no literature about it, we didn't (and still don't) know what to expect. We had no idea whether she was going to sit by herself but then one day she did. We didn't know if she was going to crawl on her knees and hands but then she did. Same thing with standing or pulling herself up, and each time it was more than just another milestone.
For most of families, the milestones their kids reach are expected to happen and when they do, it's of course a motive of celebration but then they get ready for the next one. There's nothing wrong with that, that's how I would probably be if my kid was a typical one. But Sophia is a very special kid who does things at her own pace, things are a little harder to do for her; but after three hip surgeries, having low muscle tone and having to wear braces to correct the unusual angle of her feet, I would say she is doing pretty darn good. Sophia works really hard to do the things that other kids do fairly easy so when she reaches her milestones it's a very, very big deal!
My girl is walking! with the help of a walker, yes but walking nevertheless! It is a dream come true and I am happy for myself because she is getting so big and heavy and it's hard to carry her all the time but I am mostly happy for her, her face lights up when she is walking, she realizes she can go places and she gets to be independent, she knows it and she likes it; who wouldn't?!
I don't know if Sophia is going to walk on her own without assistance but I'm not going to think about that because what I want to do right now is to enjoy this moment... every minute of it!

She lets go of the mirror for few seconds at a time

Sometimes you just want to cuddle... and that's ok.

Being a mom (or a parent, for that matter) is a full time job, let alone a special needs mom. Besides the regular duties, I am a physical and occupational therapist, a feeding specialist, a speech therapist and an advocate for my daughter. Don't get me wrong, I don't regret doing all those things for Sophia, I do it because I love her and I would do anything and everything to give her all the opportunities she needs to grow and reach her potential. But sometimes I find myself in constant working mode, thinking what I can do to help her, what cup or spoon should I buy to help her drink or eat on her own, what toys I can find to motivate her to isolate her index finger or how to organize the house so she can cruise around.
But sometimes I find it hard to allow myself to just sit back and spend and afternoon on the couch, just watching TV or cuddling with Sophia. I immediately start wondering if I should be teaching her something or working on her fine or gross motor skills instead of lying down. I guess I just feel guilty thinking that I'm not doing enough...
My wonderful husband said the other day that cuddling with my daughter is not one of the things I should feel guilty about, he said that I do exactly what Sophia needs and those cuddling moments are as important as the teaching ones. So I decided to believe him and give myself credit for what I do, I decided to enjoy the fact that Sophia loves sitting next to us and just be silly and giggle. Sometimes she crawls towards wherever I am sitting, asks me to pick her up so she can be next to me, then she grabs my hand and puts it on her arm so I can rub it, sometimes she just wants to hold hands and if she is happy doing just that, so am I.

She loves taking selfies.

Being silly with daddy.

Just chilling.

More selfies.

The PODD is her voice.

Sophia and I go to Colombia every year around March or April and this year I am extra excited because this time, we get to bring Sophia's voice with us.

Ever since Sophia started going to school, we have been very fortunate to count on excellent teachers who do everything so Sophia reaches her potential. Last year's teacher knew that Sophia needs encouragement and motivation and that with the right tools she could go really far. That's why she requested a special program where Sophia could do just that. In our school district there was nothing that could meet all of Sophia's needs, so they suggested a CAPS collaborative program specialized in communication. The program has everything we need: is located at a very nice elementary school so there could be interaction with typical kids which is something I was not willing to give up, and it's focused on communication which is key. Plus, there's a lot of staff in the classroom including a nurse so I feel like Sophia is in very good hands everyday.
From the moment I met Sophia's teacher, Erin, and I saw first hand the way the PODD was used in the classroom I knew it was the right thing for my daughter and for our family. Erin explained how the system worked and I could tell she knew what she was talking about and that she loves what she does. She has taken the time to show me how to use the PODD at home and has answered my questions in a way that I can really understand and can put into practice. As soon as she heard about our trip, she thought about making a PODD in Spanish so my whole family could talk to Sophia. How great is she?! And it makes so much sense, the PODD is not just a communication aide, it's Sophia's voice! You don't leave your voice home when you go on vacation. The PODD is part of her, it should go where ever she goes and it should be used by anybody who wants to talk to Sophia. 

So we are leaving in a month and I am excited for my family to see all the progress that my girl has made in the last year but I am mostly excited for Sophia to see that she can use her voice with them too.

Just a sample of what the Spanish version would be

No caption needed.

Complex communication needs

"The average 18 month old has been exposed to 4,380 hours of oral language at a rate of 8 hours/day from birth. A child who has a communication system (AAC) and receives speech/language therapy 2 times/week for 20-30 min. will reach the same amount of language exposure (in their AAC language) in 84 years" Jane Korsten 

84 years..... Well, that's an eye opener, and yet it makes so much sense. A while ago I wrote a post called "I can speak Sophianese" you can read it here, in which I talk about how, at the time, I thought I could read Sophia's mind and I thought I knew exactly what she wanted or didn't. Maybe I do understand the basics, like whether something is bothering her, or whether she wants me to help her with a toy or a book. But that's it. I don't know what exactly is bothering her, I can try to guess and sometimes I'm lucky, but when I can't figure it out what's wrong, I can see the frustration in her eyes, and who could blame her.
So, last year she was granted an iPad and a communication app, I was so happy to finally have something to work with. The app is called LAMP and it would give Sophia two options and speech consultant wanted to start with "more" and "stop". Sophia would have to push the button; Sophia was not really interested in it. I have to confess there was a moment when I wondered if Sophia was ever going to be able to use any system at all. I was so wrong! The problem was that we were not giving her the chance to do it, to learn, to show us what she could do. First, we were limiting the learning a new way of communicating to just 2 sessions a week. Nobody can learn a new language like that, and second we were limiting the vocabulary to two choices; what if what she wanted to choose was not there? We were assuming that she was not understanding when in reality we were not giving her what she really needed. 
Fortunately, Sophia's former teacher was able to find an excellent program focused in communication where they use a communication system called PODD( Pragmatic Organization Dynamic Display)  When I met who is now her teacher, she explained to me what the PODD is and said that she didn't have any doubt Sophia will succeed with it.  We just need to give her a fair chance, the same chance that we give a typical kid to learn a language. She needs to be exposed to this mean of communication everyday all day, without expecting an immediate response or without expecting her to have all her attention 100% of the time, just like we do with typical babies.  We are modeling a lot of words, not just two. We use the PODD to talk to Sophia about feelings and things we like or don't like that much, about favorite things and different places to go, just like we talk to babies since the moment they are born and we don't expect them to reply right away, we give them around 18 months of everyday modeling before we ask them to use the language they have been exposed to. Why would this be any different?  
We just got started and I already see the progress. In the beginning, the book was invading her space but now she tolerates it sitting right next to her and pays attention and smiles when she hears things that she likes. She has also answered to yes/no questions accurately and has made choices about her favorite things. It's a learning process, for all of us. It's a lot of work, for all of us, but it's worth it. Sophia is showing us that she has things to say, she just needs the chance to learn how to say them... just like everyone else.

A short clip of Sophia's teacher using the PODD

I am baaaack!

After a little over a year of being away from blogging, I decided I was ready to come back.
I'm not really sure why I stopped. I guess it was a little bit of everything: to start, I was overwhelmed by the fact that Sophia was going to a different school and I was losing the support of her teacher for the last three years.  The unknown of what was ahead of us was so scary. Other things a bit more pleasant kept me from blogging, like my mom visiting us for the first time since I moved to the States and it was such wonderful experience for all of us. She was here for three months and I have to say that it was not enough! I didn't realized how much my husband and I do and how little support we have until my mom gave us that support. The fact that we were able to go out after 7 at night was so exciting! Or to be able to sleep past 6 am cause my mom would see Sophia if she woke up early, or just to have my mommy right there with me whenever I felt I needed a hug... When she went back home I had a hard time going back to my routine of being just the two of us as our entire support system, but we (and I am so grateful for that), are good at supporting each other.
So things are back to normal and a lot of things, good things have happened since my last post: Sophia ended up going to a special program in a different school district specialized in communication and I am beyond happy with how things are going and with Sophia's progress since the school year started. (there will be a post about it). My best friend from Colombia surprised me for my birthday by visiting me for a week, and we had all kinds of adventures just like we used to when we were young(er).  It was so amazing to see that we are still such good friends after being apart for almost 11 years! I joined Weight Watchers in September for the third time and this time I feel so focused and I really feel like this is going to be it! I have lost 24 lbs and my final goal looks closer than ever!
Sophia has grown so much physically and mentally and there's so much to tell about her progress that I would need several posts to cover it all, which it's a good thing because I am back and I am staying! Like my little brother said: it helps you writing about Sophia's unique world and if would most likely to help somebody else.

See you soon!

Sophia and her "abuelita"