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!