This girl!

This girl!

Thursday, March 16, 2017

Communication is power!

We got Sophia's PODD (you can read all about it here) two years ago when her wonderful former teacher introduced us to this amazing communication system. It was all new to us and I have to admit I didn't use it as much as I should have, I got stuck saying the same few things over and over and didn't go beyond more than telling Sophia where we were going or that it was time to eat. She seemed to understand what I was saying but I was not making progress trying to communicate with her when she was upset or when she wanted something different to do. 
I can't say exactly why I was not taking full advantage of the PODD, maybe it was fear of making mistakes, fear of not seeing progress, distraction from all the medical issues that were going on or simple laziness. Maybe it was all of those things. About two weeks ago I decided to get serious about giving Sophia the right to communicate, I thought: if not now, when? if not me, who?. I have been following different blogs about other families using the PODD, watching videos and reading tips and suggestions on how to use it in different scenarios. 
Also with Sophia's teacher's guidance I have been focusing on acknowledging when she is upset and showing her that it is ok to be frustrated sometimes and then reading a story about a little girl who gets angry sometimes (see video below). I have to say that I am impressed and very happy to see the progress Sophia and I have made with this particular issue, I used to get so frustrated when I couldn't figure out what was bothering her and that was obviously not helping either one of us. We haven't gotten to the point where Sophia independently tells me with the PODD why she is upset but she is paying attention and seems to understand that I am recognizing and respecting the fact that she is not happy and makes her feel better again. Most of the times she is upset either because she wants more food or more of one activity or because she is tired and I am able to address those feelings giving them meaning with the symbols in the PODD. 
Even when I am not sure what it is that's bothering her, I am learning that it's still ok to say that I know something is wrong but not sure what and Sophia calms down because she sees that I am communicating with her. 
I am also working on talking about our day, where we went and what we did and how we felt about it. It is a work in progress and I am making a lot of mistakes but I am learning and most important Sophia is learning too. She is able to make choices and she has told us when she has enough or wants more of a toy or activity, at school she chooses what activity or book she wants to use and has answered comprehension questions about stories that were read to her before. The progress is evident and there is definitively more to come but I need to keep working on modeling all the time and everywhere because that is the key to her success. Sophia, just like everyone else, has the right to communicate what is in her mind, her needs and wants, her likes, dislikes and opinions about the world she is part of. 
I love Elmo


Thursday, March 2, 2017

Who is Sophia?

Sophia is special.
Sophia is not a diagnosis and she is not a statistic. Sophia is special, and I don't mean special needs special but special. She is unique and not because there is no one else with the same exact chromosomal arrangement (read here) but because her personality is like no other.
Now, I may be a little biased here but she really is the sweetest kid I know. Sophia is also determined and kind, she is loving and lovable. The many obstacles and setbacks haven't been able to erase that beautiful smile from her face, the same smile that fuels my heart to keep on going when things are tough. She is also very smart, she knows exactly how to manipulate us into give hugs and kisses any time she wants and only when she wants them. Sophia can tell when I am sad and even though she can't say it with words, she can tell me that everything is going to be ok by putting her hands on my cheeks and looking right into my eyes.
Yes, Sophia has some disabilities but they don't define her, there's a lot of can'ts but there are also cans. She can't walk independently but she can crawl and she moves around when she wants, she can also walk holding hands or with the help of her walker. She can't play soccer or baseball (yet) but she loves bowling just like her dad. Sophia can't chew her food but she can swallow and loves to eat and she is always asking for more. She can't say mama but she can show me she wants me by reaching out for me whenever I walk by her. We may not bond over manicure and pedicure but by reading some of her favorite books or singing her favorite songs. Sophia can't say I love you but she can show me her love when she looks for my hand and holds it and doesn't want to let go.
Sophia is non judgmental and she is accepting of who I am, so much so that even on the days when I am being impatient or worrying about insignificant things she still wants to cuddle with me. She doesn't hold grudges and she can see past my many imperfections. Sophia has the incredible power of bringing a smile on anyone she meets, this is true even when she is not with them because it is impossible to look at her or even think of her and not smile! Even her doctors know her by her name and not by a medical record number because her smile is unforgettable.
I feel so honored to get to be her mama and I do wish I could make all the diseases, the surgeries, the difficulties, the setbacks, the stays in the hospital and the many medicines and their side effects go away because they have tried to cloud my Sophia's beautiful personality, I wish I could make them all disappear but I can't, because this was the hand we were dealt. What I can do is to keep enjoying of all what makes my daughter the special person she is.

Tuesday, February 21, 2017

I am only human.

Last year was tough! It was hard for Sophia who had to suffer through not only the seizures but also side effects for the many different medications we tried, it was hard for us to see our little girl's beautiful personality fading away.  The last few months things have gotten a lot better, Sophia's VNS has worked well along two seizure medications and she is getting stronger and is back to being the happy girl we all know. We are back to our routine and I am excited to say that she hasn't missed a lot of school this year.
Yes, everything is better now and yet I have found myself stressing out about little things, things that I don't seem to deal with the way I probably should. Most of the times that Sophia cries I'm able to figure what is bothering her, but on the occasions when I'm not I feel like I run out of patience rather fast. I try to use the PODD to see if I can figure out what's upsetting her so I can fix it but I get so frustrated when I can't. I'm frustrated with the situation not with Sophia but unfortunately I seem to show my frustration by raising my voice to her. When I realize I'm yelling, a huge wave of guilt takes over my whole body and I feel so sad, I feel like I am letting Sophia down by not meeting all her needs and by not being patient. I feel like I am not that super mom many people think I am, like I am not the mother Sophia deserves because I am not patient when she needs me the most.
I have been told  that getting frustrated is part of being a parent and that does not make me a bad mother but for some reason it is really hard for me to understand that it is normal and that I am not the only one who feels like a bad parent for losing it every now and then. I guess I got so used to the fact that Sophia is the happiest kid ever and it used to be rare to see her upset that I just don't know how to deal with it.
In the last couple of months these crying moments have been happening more often and I was having a hard time handling it until I realized that sometimes the reason why Sophia cries is not always because there's something really wrong going on but that she is growing up and she is behaving like a typical kid who cries when she doesn't get her way. This is kind of amazing if I really think about it, Sophia has very typical behaviors, she knows what she wants and when she wants it and she makes sure we know when she disagrees with what we are doing! I decided I am going to embrace this and enjoy the ride, I still have my moments of course  but I am slowly getting to understand that I am only a human who make mistakes and gets tired and frustrated but who is trying her best to be everything that Sophia needs and deserves.




Thursday, October 27, 2016

Finding peace in a world full of "what ifs?"

Lots of things have happened since my last post way back in May. At that time Sophia's seizures were really bad and we were running out of medicines to try. We decided to go ahead and get the VNS implant in hopes that it will control the seizures and hopefully stop some of the medications and their side effects. The VNS couldn't be turned on right away and when it was on the doctor turned it up very slowing making sure that Sophia was able to tolerate the feeling in her throat.
 It has been five months since her surgery and I'm happy to report that getting the VNS implant has worked great! Sophia is down to only two medications and she is as happy as always. She is not seizure free as we knew the implant was not a cure, but it has definitely giving my girl some well deserved quality to her life and ours. 

This past year was really hard on all of us. Of course it was hard on Sophia since she is the one who couldn't catch a break but it was also very hard on Eric and me. It was also really hard on my mom who was here helping me when I needed it the most which I am so grateful for. The seizures took a toll on Sophia and all the progress she had made in the last couple of years, the set back is big and although she is slowly getting her strength back I can see some areas where she is going a little backwards and... well, that sucks! During Sophia's first few years I always pride myself in focusing on her abilities instead of her disabilities but this year I've had a really hard time with it. I've found myself wondering about a lot of "what ifs": what if she could walk?", "what if she didn't have a syndrome?", "what if she didn't have epilepsy?", "what if she could sleep through the night?", "what if Sophia could have sleep overs?", "what if... we were typical?". And every time I would stop and get mad at myself for feeling that way, then I'd feel sad and angry that this was the hand that was dealt to us. It was becoming a vicious cycle that I needed to end. 
The truth is this is the hand we were dealt and I can't change that but I can change how I feel about it, at least most of the time. All those "what ifs" are not really a possibility so there's not much sense on wasting all my energy on feeling sorry for myself. Now, I'm not saying I won't ever wonder what if this and that, I'm just going to try to go there as seldom as possible and when I do I'll do my best to forgive myself and go back to enjoy the life I get to live. 
Sophia is doing great, her seizures are mostly under control and she is walking with her walker again, she is playing with her toys and she is back to be the curious girl we all know. She is laughing out loud a lot again and she is enjoying the things she used to before the seizures took over. She is going to school all five days of almost every week and I get great observations from her teacher every single day. I want to choose  to forget about the "what ifs?" and concentrate on the "she is" and "she can", for Sophia... for us.


Thursday, May 19, 2016

The amazing Sophia.

"A sneak peek into the unique world of the girl that amazes me every day", that's the description of this blog and Sophia proved that statement once more today. It has been a really rough few months for her dealing with lots of seizures and side effects from the medicines she is on. Sophia had to deal with many stays in the hospital for overnight EEGs, lots of changes in her medications doses, several stay home from school days and countless missed social events and celebrations. Her quality of life has been really affected by this disease and it was clear that we were not getting anywhere with medications and that a different path was much needed. Our doctor suggested one of two paths: a keto diet or a VNS implant. We did our research and decided for the latter. A VNS is a device similar to a pacemaker but for the brain, it goes on her chest just underneath the skin and it has a wire that goes to the vagus nerve on the neck. The implant stimulates the nerve and sends pulses to the brain to stop the electrical discharges causing the seizures. It's pretty safe and it could potentially reduce the amount and the frequency of the seizures, has almost no significant side effects other than a little cough and hoarseness which happen in the beginning. The only downside is that it doesn't start working right away but is for a good reason: it needs to be turned on and programmed little by little to cause the least amount of discomfort and studies show that the longer it takes the better results you get.
 Based on all this we decided the VNS is the right path to take but while we were waiting for the surgery day, Sophia's seizures were still uncontrollable; happening day and night, we needed something sooner and the doctor decided to put her on steroids. That was a treatment she didn't want to have to prescribe because of the side effects but the benefits definitely outweighed the risks.  Fortunately it worked! The hunger, the irritability and the mood change are there for sure but so is the being more awake and alert as well as decrease in the number of seizures. Sophia is definitely not back to being herself but it's so nice to see a glimpse of the resilient girl she is.
As I said, today she amazed me once more! Today was her VNS surgery and I had all kinds feelings about it. I was nervous, scared, hopeful, mad and anxious. Surgery means anesthesia and Sophia has had problems with nausea and low oxygen  in the past. It's supposed to be a day surgery but I was scared that she was going to have problems and we were going to have to stay and I was mad (still am a little bit) that my girl had to go through yet another procedure, mad that she has epilepsy hard to control and mad that this implant, although promising, is not a guaranteed fix and we still need to wait and hope that it at least helps some.
Yes, I was a nervous wreck but not Sophia. My sweet girl was as happy as always when the doctors took her away, when she woke up she did cry for a few minutes while she was waking up but then I saw the beautiful smile and the curiosity and the personality we all know. She ate very good with no signs of nausea and in no time we were discharged. She was very happy on the ride home and hearing her laugh in the back seat made me forget, at least for a while, what she has been through. At home she was very hungry which I was very happy to be able to fix and then she fell asleep in her abueliita's arms. It was almost a perfect day despite the surgery and it's all because of Sophia, people often tell me how strong I am but the real hero here is this girl! I am strong because she is strong, I am brave because she is brave and if she can put a smile on her face after having a day like today and keep on going then I can too.

Thursday, April 21, 2016

Side effects.

Epilepsy sucks! It really does. It's stubborn and it's tricky, when you think it's under control and you start to relax, the seizures start again.
Sophia was diagnosed with epilepsy about 5 years ago and it was pretty manageable for 4 of them. She was on one medication that needed to be increased every year as she got older and bigger. About a year ago after we increased that medicine Sophia started having more seizures, her neurologist said that we had maxed out the dosage for the medicine she had always been on so we added a new one. That medicine came with its side effects: loss of appetite and risk of kidney stones which helped to finally make the decision to get a feeding tube. Things got better for a period of time until Sophia started showing new symptoms: she was slouching towards the left when sitting down, sometimes she could catch herself but sometimes she couldn't and would fall on the floor. She was very shaky and weak and we increased the medication several times with little improvement. Last November Sophia had what was supposed to be a 48 hour EEG at the hospital but she ended up staying there for a week because the test showed that her brain was in constant seizure activity even in her sleep, you can read more about it here. At that time, we made a lot of different changes in her medications and found a treatment that seemed to control the seizures enough to be sent home. Sophia was so drowsy the first few weeks due to the side effects of the meds that she would take several naps during the day and still slept all night. Little by little she was more awake and alert but then she started having seizures again so we kept increasing the dose of some of the medications but with them the sides effects increased too. The sleepiness and the drowsiness came back and she also started losing her beautiful hair. It's funny how you can be strong facing difficult situations but then, something little sneaks up on you and you lose it... I was able to manage the stress of having to watch Sophia like a hawk to make sure to catch and tape any seizures to show the doctor, trying to remember all the dosage of all the medications and seeing my daughter exhausted all the time. But when I saw the incredible amount of hair in her brush and the bold spots in her beautiful head I lost it! I felt so powerless and so helpless... Her hair loss was like an imminent proof of the toll the strong medications that try to control this horrible disease have taken on my daughter.
The last dose increase helped for a few weeks which seemed to be the pattern with every medicine we try. Sophia showed the same symptoms she had last year: tremors, shakiness, absent and full blown seizures and extreme tiredness. An EEG showed she was seizing constantly again, day and night non stop. Her brain is in constant activity, when she sleeps she doesn't enter into a deep sleep so she never gets to really rest. That's why she is so tired all the time!
The medicine is clearly not working, all it is doing is adding to the sleepiness and causing her hair loss. Right now the plan is to go back on a medication Sophia was on before which helps a little but she can't be on it for a long period of time but enough to make a decision as to what path we should take. The doctor gave us two options to think about: a ketogenic diet (a very strict diet high in fat, low in carbohydrates) or a VNS therapy (vagus nerve stimulation) which is an implant that sends pulses to the brain to control the seizures, this therapy is used when seizure drugs are not effective and surgery is not an option. Both have their pros and cons and we clearly have a lot to think about. I am not sure which path we are going to follow but we have to do something soon! Sophia wants to be the happy, energetic, strong, active, she wants to learn and advance, she wants to play and walk but her body is trapped in a cobweb made with drug side effects and a fog caused by the seizure activity in her brain, and I am going to do everything and anything I can to help her break it and be the girl she is meant to be and we all know.

Friday, February 26, 2016

I can see clearly now.

Sophia sees a lot of doctors. She is followed by about 6 specialists and one of them is an eye doctor who has seen her since she was born. One of the first things we noticed when he saw Sophia as a new born was her left eye being smaller than the other one as well as her left pupil. When she was about 2 years old, Sophia had a surgery where the doctor opened up her tear duct and saw that everything looked normal inside despite looking different on the outside. She had follow up every six months or so and Sophia seemed to see ok but because she can't tell us we were never really sure. A few weeks ago, the doctor examined her eyes with her pupils dilated and saw that Sophia has astigmatism and since she is also turning her left eye out at times he wants to give eyeglasses a try. He wasn't sure how she was going to react and I didn't either. We didn't know if the glasses were going to be too overwhelming for her or if she was going to try to take them off all the time and I was not looking forward adding another stress to her life. But we decided to give the whole thing a chance and I am so glad we did! When the glasses were ready to be picked up, I sat on a chair with Sophia on my lap, the guy helping us was having a little bit of a hard time fitting the strap around Sophia's neck but she didn't care at all! She was too busy being amazed by the world around her! Her eyes wide open and a "wow" look on her face were priceless.
 It has been a week since Sophia tried her glasses for the first time and she hasn't tried to take them off, not even once!! Once again I underestimated my daughter and once again she shows me that she can figure things out, I guess I tend to transfer my own insecurities and fears into her and assume she feels the same. I know that doesn't make me a bad mother but I do want to assume that she is capable of doing amazing things if given the opportunity. I was not sure the glasses were going to work and I was already leery about them even before we got them! Sophia is smiling more when we read her books and noticing little things like prints on my clothes and details on her toys. At school she is looking a things as if it was for the first time. Her teacher said that Sophia is more attentive since she is wearing her glasses!
We gave her the chance and here she is re discovering the world around her, the same world she had seen before a little blurry and distorted,  now sharp, bright and full of life!

And she looks great too!