tag:blogger.com,1999:blog-47597343941057924782024-02-28T15:44:13.760-08:00Sophia's unique worldA peek into the unique world of the girl that amazes me every day.Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.comBlogger97125tag:blogger.com,1999:blog-4759734394105792478.post-40334930515564293922018-10-18T19:26:00.001-07:002018-10-18T19:26:19.048-07:00Just one more day<div class="separator" style="clear: both; text-align: center;">
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This popped up in my Facebook feed the other day and it brought tears to my eyes. It brought to the light a very known fear for me that was born the very same day I learned about Sophia's diagnosis. It has been kept deep inside my soul for the last 10 years but there hasn't been a single day that I don't think about it. When I saw this post I felt the need to blog about it and let it out.<br />
From the day we saw in a routine ultrasound that something was up with the little girl we were expecting, I feared what would happened when I'm gone. When she was born I made the decision to live in the present and not worry about the future so I locked that fear in my heart. Eric, being the wonderful, responsible and smart provider for our family that he is he set up a trust and a will to make sure Sophia is taken care of financially when we are gone. That part of it is set and I know that a big step, while we were doing all the paperwork I kept my fears and the emotional part still locked inside me, I was focused on the practical part of the process, something that needed to get done and we did. We work so hard to make sure Sophia has everything she needs, I keep looking for ways to help her reach her potential and I do my best to make her life as good as it can be... or do I? Am I doing enough?...<br />
When I let myself think about it, I get so overwhelmed by sadness, panic and anxiety about how my baby's life would be when I'm not here to take care of her. My life is and has been for 10 years about being Sophia's mom, nurse, therapist, advocate, driver, cook and caregiver. Who is going to do all those things for her with at least half of the love, patience and dedication? Who is going change her diaper or take her to the toilet, wipe the drool from her face, feed her and bathe her? Are they going to understand her babbling and cute sounds? Is she going to know I'm not there? Will she be happy?...<br />
When I saw this post by another special needs parent I realized I am not alone, I am not the only parent who fears about what they special needs child's future is going to be. I realized there is not much I can do but to wish for my daughter to have a long happy life with me by her side and yes, to wish that her time in this earth ends just one day sooner than mine.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com1tag:blogger.com,1999:blog-4759734394105792478.post-13156851145481264372018-10-04T18:54:00.001-07:002018-10-04T19:00:52.714-07:00What about them?Recently a picture of a dad changing his son's diaper on a squat position went viral. It brought to light a difficult problem dads encounter when they go to a public restroom and there's no changing table to change their babies and toddlers. A movement was born from that picture and hopefully it pushes for a positive change.<br />
That got me thinking, what about them? What about bigger kids with special needs who don't fit in typical changing table? What about the teenagers and adults who can't sit on a regular toilet and need a more comfortable and dignified place to get changed? We, as parents of special needs kids and adults, have been in the same situation like that dad; countless times we found ourselves changing our kids not only on our laps but on a filthy floor. This is a problem that some of us will continue to face as some of our kids may never be toilet trained for one reason or another.<br />
My daughter has been toilet training for a couple of years and we have made a lot of progress and she has more success trips to a public restroom than not but when she does have a accident, we dread the figuring out how we are going to change her diaper. When we plan trips to different places we need to think about the restroom situation and there has been a few times were we have decided not to go because we were unsure how accommodated the restrooms were going to be. Not fair. When we do go and Sophia has an accident we either have to wipe her while she is standing up which is not easy and healthy since I can't really be sure I did a good job leaving her clean, or we have to put a jacket or a blanket on a very dirty floor to change her. Again, not fair. This needs to be brought to the spotlight too! There are about 48 million people with some type of disability and 24 million of them have a severe disability. That is a lot of people who may need special accommodations just to use a restroom outside their own home.<br />
We need to create awareness to this tough situation for these people and their caregivers and show the country the importance of having public restrooms equipped with facilities that accommodate everyone. There needs to be bigger changing tables, bigger handicap stalls with enough room for a wheelchair and whatever other equipment the person has.<br />
It's simply a matter of having the right to be treated with respect and dignity, it's a matter of being able to go wherever you want to go without thinking that you may have to lay down on a dirty floor because there's no place that can meet your needs. We need to have this conversation and bring this to light because no one deserves to be humiliated or to suffer just because they need to use the restroom, no one!<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com0tag:blogger.com,1999:blog-4759734394105792478.post-67718051179890817282018-08-02T18:50:00.001-07:002018-08-02T18:50:28.015-07:00If I was 20 years old againThe other day I found some old cds in a box I had forgotten about on top on my dresser. They certainly brought lots of memories from my life as a young adult a long time ago. As I was singing out loud in my car, I was transported to those times and I swear I could smell the apartment I used to live in with my father. I could almost feel the breeze of cold Bogota mornings when I walked to school everyday, I could see myself in my 2005 fashion outfit and thought: I truly had my whole life ahead of me and I didn't even know it! I didn't know I was going to blink and I was going to be almost 43! Where did those years go? What have I really done with my life? All of a sudden I realized the absurd number of things I could've done or the places I could've visited, the things I could've learned or the people I could've met... I guess that's what a mid-life crisis feels like. *sigh*<br />
I started feeling trapped in the old body of a mother of a kid with special needs whose condition limits the number of things I can do now. I started wishing I could go back in time and be 20 years old again, be "free", be presented with all kinds of different paths to choose from. I wish someone had read to me "oh the places you'll go" and I actually followed through. I felt as if I had done nothing significant or important or valuable, and for a second there I thought I had wasted 20 years that I cannot get back.<br />
But then I looked at Sophia's smile and suddenly it all made sense. If I had done anything different when I was 20 years old she would probably not be here. I would have probably stayed in Colombia and earned a master's degree in education and became an English professor. Or maybe I would have gone to Europe instead of coming to the United States, but then I would have never met Eric and our beautiful family would have never been built. I would probably never have been a Spanish interpreter and never would have felt the satisfaction of helping people who don't speak English. I realized that if I hadn't had this life the way it is, I would have never met some of the most amazing teachers, nurses and aides that have been in Sophia's life. If I had taken a different path 20 years ago, I would probably have never known the amount of love I was capable of giving, or how strong I could be or even how much pain and frustration I could bare.<br />
So this is it, I am a 42 year old mom who is doing her best to help her daughter reach her potential and who doesn't give up on finding ways to make that girl's life as great as it can be. Maybe I can't recover the lost time, but I can make the best of what I have left. The path that brought me to where I am now is as great as any other, and I have Sophia's beautiful smile to remind me of that.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com1tag:blogger.com,1999:blog-4759734394105792478.post-85887490012957334472018-07-25T18:07:00.001-07:002018-07-26T04:34:25.516-07:00Self care and new goalsI am 42 almost 43 years old and I need my mama more than ever. Most of you know I was born in Colombia and came to this country 15 years ago leaving all my family, friends and culture behind. Here I found love and Sophia came to this world to change my life forever. It has been a very lonely road but my mom and my family have been supporting us from a distance every step of the way.<br />
My mom has been coming to visit for the last few years and she usually stays for about 5 months, the help and the company she provides is invaluable! She takes over a lot of the chores and routines, she learns how to hook Sophia up with the feeding tube to give her medicine and even tries to read her books in English. She spoils her granddaughter with cuddles, hugs and kisses and she gives me and Eric the possibility to go on dates just like husband and wife. I can't even begin to explain how grateful and fortunate I feel to have her here with us.<br />
But the day of her return home is rapidly approaching and I am dreading the goodbye. It is always really hard for me to see the empty space where she sits on the couch, or her empty bed and the mug she has coffee every single morning, It's going to be hard to see Sophia looking for her abuelita around and I know it is going to take a while to get used to be just the three of us again. I have been there before and I know I'm going to feel sad and lonely, in fact I already am... That's the reason why I decided I needed to come up with a plan, I need to find something to keep my mind occupied, I need to find a way to take care of myself so I don't fall into a hole where I can't get out and care of my daughter the way she needs me to.<br />
I came up with two goals that I think are going to help me both emotionally and physically: A while back my wonderful husband got me a nice digital camera which I have played with a bit and now I want to dedicate time to learn and practice nature and street photography. There is so much to learn and it is not easy but I am determined to have patience and enjoy the process because this is the one thing I feel really passionate about.<br />
The other goal is to focus on getting stronger and more fit at the gym, I lost 74 lbs and feel great about it but now I want to push myself and get healthier so I can really be there for Sophia and make sure I can do so for a long time. I had a seven day pass for this gym and realized I want to work on my strength and tone, they had boot camp like workouts and spinning classes which made want to push myself a little harder. I am going to sign up and commit to go at least 5 days a week.<br />
For the last 10 years I have been focusing only on what Sophia wants and needs and that's has been my decision and choice, I do it with all the love any mother have for her child but I recognize I have left myself behind along the way, that it's not healthy or helpful so I realized if I want to keep pouring from my cup I need to fill it. I realized it's my time, it's time for so much needed self care.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com0tag:blogger.com,1999:blog-4759734394105792478.post-20408435803722736342018-06-21T18:22:00.001-07:002018-06-21T18:22:17.090-07:00When new challenges are a good thingSlowly but surely Sophia has been making a lot of progress since I started weaning her off the pharmaceuticals, her personality, laugh, curiosity and her mobility are back. All these gains bring new challenges but I never thought this could be a good thing. Before decreasing the meds, Sophia was so tired and drowsy that she would either be in my arms or laying on the couch so I didn't need to worry about her falling while walking or her getting into places she could get hurt. She wasn't playing with her toys at all so I didn't need to check if there were loose pieces on the floor, we would put her to bed and I was confident she would stay there even if she woke up too early because she wasn't moving much. Her bed time was 7:00 and sometimes she could barley make it because she was so tired and out of it that I didn't need to find things to do to keep her up.<br />
Well, things are turning around, the other day Sophia fell because she was walking too fast with her walker and tripped, she had a big bump on her forehead and I was so upset until a good friend pointed out that the fall was actually a good thing: It happened because she was waking!! She was moving!! She is going to fall again and that's makes it so "typical" so "normal" that I am actually looking forward to worrying about bruises and bumps.<br />
Now I find myself cleaning up toys all day long because Sophia is actually playing with them and exploring everything around the house, I can barely keep up with her and the minute I look the other way she is off to the kitchen or the bathroom. Sophia is asking me to hold her hand and walk around the complex where we live and she is checking everything out, it's as if she is discovering the world for the fist time after waking up from a deep sleep. She is making me move all day and that's such a beautiful reason to feel tired at the end of the day. Sophia is so not that rag doll she was when she on the full dose of the meds and she is so awake and alert that now we had to move her bedtime to later! She sits on her bed and laughs and talks until she finally falls asleep in a funny position. We even had to put a bed rail! All these new things to think about and worry about are the type of things I thought were not in the book for us but Sophia keeps surprising us every day and I am very excited to see what else she has in store for us.<br />
So we are going to have to baby proof the house, find different activities to keep up with Sophia's energy and have the neosporin and ice packs ready, because the new challenges that come with having a kid that wants and works hard to make progress are the kind of challenges that I can't wait for.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com0tag:blogger.com,1999:blog-4759734394105792478.post-40613549652279661072018-06-15T10:00:00.000-07:002018-06-15T10:00:24.519-07:00Double digits and a big surprise!10 years! I still can't believe it has been 10 years since I saw Sophia's beautiful face for the first time. I knew the challenges were going to be big but i didn't know how those challenges were going to change me. I didn't know how much I was capable of loving and caring.<br />
To celebrate this big milestone, my aunt and I made a beautiful book about Sophia. my talented aunt captured my girl's spirit in her illustrations and I will be forever grateful for her collaboration. I gave it Sophia on her birthday and made a video of the interaction, I love how much attention she is paying to the PODD and specially to the book. It's moments like these when I see the progress and think that all the challenges we have faced the last 10 years have been absolutely worth it!<br />
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Happy 10th birthday my beautiful princess!!<br />
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Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com0tag:blogger.com,1999:blog-4759734394105792478.post-3290496026454882242018-06-07T17:56:00.001-07:002018-06-07T17:56:25.934-07:00When the caregiver needs careIf you read my last post you know it has been a bit stressful around here, if not you can read it <a href="http://sophiasworld-sophiaale.blogspot.com/2018/06/hello-again-it-has-been-very-long-time.html">here</a>. My mind has been working 24/7 trying to find ways to help Sophia get better everyday and dealing with everything that comes with it. Every time there was a crisis I'd lose my mind trying to figure out what caused it, was it the new herb? was it the full moon? was something I did? was it something I didn't do? I wanted to find the answer to these questions so bad that I ended up so stressed that I found myself getting upset very easily because of everything and anything: if I forgot something upstairs or if I spilled my coffee it was the end of the world. It got so bad that I caught myself yelling at Sophia for no reason at all. Those moments were the worst!<br />
Almost immediately, the guilt and the anger, the sadness and the frustration and every other feeling in between, would pile up on my shoulders... so heavy. That big pile of feelings was like a thick brick wall that would stay between me and everyone else including my own daughter. That wall wouldn't let me accept my husband's comfort or my mom's hugs, not even Sophia's smile. I'm not sure why, maybe I didn't feel worth of any of them. I don't know but it hurt, it really did.<br />
I needed to do something soon. Someone suggested that talking to a therapist could help me find ways to manage how I react to difficult situations. In the beginning, I honestly think it was going to be a waste of time and money, I mean, what was the therapist going to suggest? to count to ten? to step out and take a deep breath? to squeeze a stress ball? I knew all that theory, I just didn't know how to put in practice in moments of crisis. How was he/she going to help me with that?<br />
I decided to give it a try and it was worth it! My therapist doesn't have the magic pill or the trick to be a happy person all the time but he does listen and validates my feelings so I don't feel like the worst mom in the world when I have a bad day. My loved ones had already said so to me but I guess I need to hear it from someone impartial. It was hard to admit that I too need to take care of myself so I can take care of Sophia, I guess I thought I needed to put my feelings away because she was more important and it ended up backfiring because they were piling up and hurting not only me but my daughter, my husband and my mom.<br />
Now I look forward to the chatting with my therapist and I recognize that I have a lot on my plate and probably will for a long time but I also understand that it's ok to be mad, sad and frustrated at times and that doesn't make me a bad mom. It has worked, not every time but it's better and I am learning that I don't need to be a perfect supermom but the kind of mom Sophia needs and loves.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com1tag:blogger.com,1999:blog-4759734394105792478.post-9993010855751952952018-06-01T18:16:00.000-07:002018-06-01T18:17:16.275-07:00Back to natureHello again, it has been a very long time since my last post. I feel like the last year has been a really amazing roller coaster with many ups and downs and so many highs and lows. We are still fighting the epilepsy monster but it seems like there's another monster that tagged along: pharmaceutical side effects. I watched how my very happy and active daughter was slipping away from me and all that was left was a very drowsy girl who was losing all the abilities and progress she had gained. I remember how sad it was for me to see my Facebook memories everyday because they showed how well Sophia was doing before the poison of the seizure medications she was taking. I didn't realize that it was the meds and not the epilepsy that were causing the regression and kept feeding the side effects by adding new ones and upping the dose of the ones she was already on, I was attacking a monster with another equally evil.<br />
I started thinking really hard, and I mean REALLY hard. It became my full time job to find a way out of this mess, to find an alternative to the reality my poor daughter was living because I was convinced we didn't have to settle for what the western medicine had to offer, there has to be something else that could help bring my daughter back and I was (am) committed to find. So I read a lot about natural medicine and also talked to a couple of people who were willing to share their knowledge with me. I realized that even though Sophia was already taking CBD oil it could only help so much while she was still getting big amounts of pharmaceuticals every day. Also, I paid more attention to what I was feeding her and started switching over processed foods for more home made ones. Then after countless sleepless nights, I made the very hard decision to wean Sophia off the pharmaceuticals. There was a huge conflict in my head because I was going to renounce to what I had been taught to believe growing up and I open my mind to a different way of healing and that is a very scary switch to do.<br />
So the decision was made and knew the new road was going to be a difficult one, too. First it's the weaning process which brings withdrawal symptoms so I made sure to do it in a very slow and safe way. Second, I needed to make sure I gave Sophia an alternative to protect her from getting too many seizures whether that meant more CBD oil or trying different herbs and natural remedies. Lastly, I wanted to make sure I kept offering the most natural and nutritive meals I could to help her body heal and detox from all the bad things she had been getting for 9 years.<br />
It certainly hasn't been easy, not in the least! It has been a constant search for and try different treatments, different herbs and natural remedies. Some work and some not so much, there has been a lot of moments of crisis when I've doubt myself and wonder if I did the right thing in choosing a natural treatment over a pharmaceutical one but even during the crisis I see the old Sophia to come back, she is walking again, she is moving a lot playing on the floor, she is alert and the interaction with other is much better. Comparing my daughter today to who she was two years ago when she was reduced to a rag doll too weak to lift her head, there's no doubt in my heart I made the right thing by giving her a fair chance to be the kid she is was meant to be.<br />
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<img src="blob:https://www.blogger.com/89b95088-b844-4b51-8cee-60c968c70bb3" />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com0tag:blogger.com,1999:blog-4759734394105792478.post-15107864900520734312017-10-09T19:11:00.001-07:002017-10-09T19:51:49.540-07:00The epilepsy monsterI try to keep this blog as positive as possible but truth is not everything is rainbows and butterflies. I try to live day by day because experience has taught me you never know how long situations are going to last. If you follow our story you know Sophia has gone through a lot, from several surgeries to episodes of dehydration and a lot in between. But with no doubt the hardest of it all has been dealing with the seizures.<br />
I can deal with accepting her condition, with researching everyday about how I can help her with her fine and gross motor skills, googling nonstop about the best spoon so she can eat more independently, modeling and talking everyday with her PODD even when I don't see a lot of progress back, going through a lot of trial and error trying to find the best sippy cup so she can drink safely on her own, sticking to her routine because she does better when we follow it... I can do all this as long and as much as she needs me to and i’ll do it gladly, but what I have a really hard time dealing with is the fact that all this becomes a thousand times worse because of the seizures. It makes me mad when I see how epilepsy affects the progress she has made, her balance and strength have decreased and although she works hard everyday to gain them back she still struggles a bit. <br />
It makes me sad when I see how much she is trying to be her happy self but the seizures and the side effects of the medicines she is taking steal the smile from her face. I recognize that this has been better than last year because the seizures are a bit more in control than they were but still, the struggle never ends... Sophia has a VNS implant and she is taking three seizure medications and it's not enough, that's why we decided to give CBD oil a try. There are different brands, and within each there are different strengths and components. This has been a struggle on its own! It's a lot trial and error but I didn't want to give my little girl anymore pharmaceutical with nasty side effects.<br />
We think we found one that helps a little bit, we have noticed positive cognitive changes, the potty training has been successful 80% of the time, she is a little more focused and alert, she is playing with toys a bit more purposely and her smile is on her face more times than not. Although it's really great seeing all this positive changes, that good feeling goes away as soon she gets sick because any illness is much harder when you have epilepsy. A simple ear infection can mess things up big time. Antibiotics can make the seizures worse and all the progress she makes seem to fade away right before my eyes. Every time Sophia gets sick I have to see her endure a few bad seizures and it's heartbreaking, I see myself struggling with keeping calm and giving her comfort because my heart fills with anger and wants to fight this horrible monster and eject it from our lives for ever... but I can't, all I can do is let it all out on this blog and keep living day by day and doing my best to be there for my daughter, after all she is the one truly dealing with it all.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com2tag:blogger.com,1999:blog-4759734394105792478.post-54771586469316056072017-04-28T03:40:00.001-07:002017-04-28T03:40:21.291-07:00The need to fit in.Why do we seek to fit in somewhere, anywhere? Maybe it's human nature to want to identify ourselves with someone, share the same interests and even the same struggles with a group of people so we don't feel so alone. This is especially true when you have a special needs kid, suddenly the number of people that share something with you gets smaller and harder to find making you feel even more alone.<br />
My beautiful Sophia is really special and not only because everyone is special in their own way but also because genetically there's no other person like her (<a href="http://sophiasworld-sophiaale.blogspot.com/2013/04/deletion-2q36-and-duplication-9p21-wait.html">read here</a>). When she was born we were given some literature about chromosomal disorders similar to hers which gave us little to no sense of what to expect because the range of characteristics were so wide. At that time I was not thinking about finding support, I guess, because everything was so new and I was focusing on getting through all the surgeries she had during those first years. But then time passed and I started feeling alone as I was struggling to find others whom I could identify with, even with the number of support groups that can be found on Facebook and other social media I was feeling alone. I found epilepsy groups, feeding disorders groups and speech groups where I could find answers to specific questions (which I'm grateful for) but still once my question was answered all the other things about Sophia, the beautiful and the also the difficult things about her condition would separate us from everyone else. I recently found a general special needs moms' group and I see posts from parents of kids from all kinds of different backgrounds, different diagnosis and different challenges but then I realized we all have something in common, we all want our kids to reach their potential, to be happy and we all fight really hard to make sure they are getting their needs met. I realized that although it's important to find and meet people to share the same experiences with, we should not let the different diagnosis or different struggles divide us but bring us closer together because we all do have one big thing in common: we are all parents of very special kids.<br />
Maybe someday we cross paths with someone with the same condition as Sophia but in the meantime I am going to do my best to not let that feeling of loneliness stop me from enjoying the uniqueness of my beautiful daughter.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com5tag:blogger.com,1999:blog-4759734394105792478.post-40239890918083765012017-04-13T18:37:00.001-07:002017-04-13T18:37:39.309-07:00Keep calm and model onIt has been a little over 4 weeks since I decided to really immerse into the PODD and show Sophia what could be her voice. It's amazing to realize the amount of beautiful moments of communication that have been missed between me and my daughter and so many missed opportunities to chat, to share, to discuss. In my last post (<a href="https://sophiasworld-sophiaale.blogspot.com/2017/03/communication-is-power.html?showComment=1492125557861#c3311267982084951840">read here</a>) I mentioned I was stuck saying the same three things over and over, we were not having conversations so much as me telling her where we were going three times a day. But in the last month we both have had so much fun talking about everything! I am modeling a lot and she is definitely listening and taking it all in, we are talking about things in a more specific way like this week when the weather was beautiful and we were able to go for a walk, I took my time and I told her that it is spring and nice so she would be able to ride her wagon. Or the other day we were at the mall and Eric was shopping for shirts, Sophia and I were just standing there and waiting and then I thought: this is a great opportunity to chat and I told her what daddy was doing and that's why we were waiting. We watch Elmo and Barney a lot, we always have but now we talk about what the characters are doing and we both really enjoy it. It sounds simple and obvious but it is not, it is a lot of work and a lot to remember, a lot of putting aside the feeling of looking silly and the frustration of making mistakes, it's a lot of remembering to use the PODD to model everything all the time and everywhere, but all this is not hardest part of the process. The difficult part is to teach Sophia that the PODD is a powerful tool for her to use whenever she wants or needs something or someone. I want her to understand that she doesn't have to watch the show I picked for her if she doesn't want to or play with the toy I chose for her if she wants a different one. I got her a switch with the toilet symbol on it with my voice saying "I need to go to the bathroom" so she can push it when she needs it, she is still not doing it even though she understands what is for because I model it all the time as well as the teachers at school. I don't blame her though, I have been anticipating all her needs for 8 years! I feed her at the same time everyday, I take her to the potty on a schedule, I know most of her favorite things to play with and I make sure she has everything I think she needs in the moment I assume she needs it. She is still learning that there's is this amazing language system that we are using to give meaning to all the signs and gestures that Sophia has been using all this years and that I have understood for the most part. But the truth is that I can't read her mind and honestly I shouldn't, Sophia is a human being with thoughts, ideas and feelings and I want her to understand that she has the right to share them with the world. I know that when she realizes she has the power to express what's in her mind she is going to be unstoppable!!<br />
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<tr><td class="tr-caption" style="text-align: center;">Watching Barney and talking about it.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Watching Elmo and also taking about it.</td></tr>
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com2tag:blogger.com,1999:blog-4759734394105792478.post-33680542072584234002017-03-16T19:10:00.000-07:002017-03-16T19:10:00.084-07:00Communication is power!We got Sophia's PODD (you can read all about it <a href="http://sophiasworld-sophiaale.blogspot.com/2015/02/complex-comunication-needs.html">here</a>) 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. <div>
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. </div>
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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. </div>
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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. </div>
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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. </div>
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<tr><td class="tr-caption" style="font-size: 12.8px;">I love Elmo</td></tr>
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Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com2tag:blogger.com,1999:blog-4759734394105792478.post-51335741205906752862017-03-02T10:24:00.000-08:002017-03-03T03:36:55.186-08:00Who is Sophia?Sophia is special.<br />
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 <a href="http://sophiasworld-sophiaale.blogspot.com/2013/04/deletion-2q36-and-duplication-9p21-wait.html">here</a>) but because her personality is like no other. <br />
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.<br />
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.<br />
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.<br />
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.<br />
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Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com3tag:blogger.com,1999:blog-4759734394105792478.post-2081838717967983692017-02-21T18:08:00.001-08:002017-02-22T05:00:49.450-08:00I 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.<br />
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.<br />
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.<br />
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.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com1tag:blogger.com,1999:blog-4759734394105792478.post-34612669718030933002016-10-27T19:28:00.005-07:002016-10-27T19:30:17.758-07:00Finding 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.<br />
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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. </div>
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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. </div>
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The truth is <i>this is </i>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. </div>
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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.<br />
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Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com8tag:blogger.com,1999:blog-4759734394105792478.post-58217805022203133492016-05-19T18:32:00.001-07:002016-05-19T18:46:38.702-07:00The 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.<br />
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.<br />
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.<br />
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.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com6tag:blogger.com,1999:blog-4759734394105792478.post-17099351516679856562016-04-21T18:51:00.000-07:002016-04-21T18:51:04.358-07:00Side 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.<br />
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 <a href="http://sophiasworld-sophiaale.blogspot.com/2015/08/so-feeding-tube-it-is.html">feeding tube</a>. 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 <a href="http://sophiasworld-sophiaale.blogspot.com/2015/11/picking-up-pieces.html">here</a>. 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.<br />
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!<br />
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.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com5tag:blogger.com,1999:blog-4759734394105792478.post-57054550070108410082016-02-26T18:43:00.003-08:002016-02-26T18:45:46.367-08:00I 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.<br />
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!<br />
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!<br />
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Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com1tag:blogger.com,1999:blog-4759734394105792478.post-51247378889074288812016-02-19T18:57:00.002-08:002016-02-19T18:57:08.055-08:00The blessings of having a feeding tube.This past week was feeding tube awareness week, and I wanted to take a moment to reflect on what this journey has been for us and also on why it is important to create awareness. When some doctors and feeding specialists had suggested a feeding tube for Sophia, I refused to do it because I was convinced that I just needed to work harder and insist on making her drink enough. I thought I needed to keep trying out different sippy cups, different flavors... There was no way I was going to open a hole in my baby's belly! Turns out I didn't really know a whole lot about tube feeding and I was afraid of the unknown. I thought that a feeding tube would be the result of me failing my daughter, crazy I know but that's what I was feeling at the time because I knew so little about the amazing possibilities that this procedure would give us.<br />
Today, 6 months after her surgery, the tube not only became second nature to us but it also came to our lives at the right moment. In November, Sophia's seizure activity increased considerably and we had to add medications to control the seizures. She is now taking 4 different meds and I know that without the tube it would be a nightmare to try to give her the 6.5 mls she takes in the morning and the 18 mls she takes at night. Sophia went from drinking, with a lot of difficulty, 2-3 ounces of liquids a day to getting 24-26! For that reason alone the feeding tube has been a life saver. Another benefit from having this tool is the possibility of getting the nutrition Sophia needs whenever she can't get it from eating by mouth. When we started trying new medications for her seizures, her body was having a hard time adjusting to them and she was extremely drowsy and sometimes she wouldn't wake up to eat. Other times it would be one of the medications causing her to lose appetite. Whatever the reason is for Sophia to have a hard time eating, we have now the possibility of feeding her through her tube and that not only alleviates the frustration but it truly gives me a great peace of mind.<br />
Having a feeding tube hasn't stopped Sophia from doing the things she loves. She can take baths and play in the water like she always has and she is not going to stop going to the beach in the summer because of it. We still go to restaurants, playgrounds and visit family. The feeding tube is part of Sophia, it's no more than an extension of her digestive system and a tool for feeding just like a spoon is.<br />
There's dozens of reasons why kids and adults have feeding tubes. Some have a lot allergies so they can't get the proper nutrition, others have a hard time swallowing, many aspirate food and liquids. A feeding tube is the reason why so many people can get the nutrients, medicine and fluids that their bodies need to thrive and reach their potential.<br />
I didn't know all of this until Sophia got her feeding tube, I wish I had been more informed long before we made the decision to get it. The transition would have been less traumatic and I honestly think I would have done it before we did because it would have saved us a few trips to the ER for dehydration. That's why it's so important to create awareness about feeding tubes, people that are considering it need to know that it's not as terrible as it sounds and having one saves lives. The community in general also need to get informed so there's less judgement and more understanding. So here it is to the Feeding Tube Awareness Week, a picture of my Sophia being saved by one.<br />
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<tr><td class="tr-caption" style="font-size: 12.8px; text-align: center;">Medicine too thick and yucky? No problem!</td></tr>
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<tr><td class="tr-caption" style="font-size: 12.8px; text-align: center;">Too tired to eat? No problem!</td></tr>
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Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com9tag:blogger.com,1999:blog-4759734394105792478.post-2163423592472214812016-02-03T17:51:00.001-08:002016-02-09T13:10:34.715-08:00Mommy and daughter day left me exhausted. But that's a great thing!Today Sophia and I had a busy day. The day started right before 4:00 am when she woke up happy and ready to go. This has been her waking up time for the last few weeks, not sure why but she is not upset at all. I can see her in the monitor having a great time laughing and babbling. Yes, it's way too early for me but who can get mad at that silly happy girl really?!<br />
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First was our orthopedist appointment which went excellent. Everything with Sophia's hip looks great as well as with her feet. The AFOs are doing their job and three hip surgeries seemed to do the trick to fix her hip dysplasia. The doctor wants to see Sophia in 6 months for a follow up and if everything looks good, we can see him only once a year, which could really help us a lot.</div>
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Sophia also had an audiology appointment but not until early afternoon, so we went to the mall and it was great! we had the playground for ourselves and Sophia wanted to walk from wall to wall holding hands. She didn't want to crawl, she wanted to walk! After a good workout walking, we went to the restroom and even though her diaper was very wet, she sat and peed! My big girl!<br />
Then we went to the hospital where we had the appointment, had lunch and with still one hour to go, Sophia wanted to spend it walking everywhere and exploring everything. She was loud, alert and very happy. The hearing test went well, she was very interested and amused by the sounds but after a little while she decided she would rather walk than sit and listen to the same over and over again. The audiologist was very pleased to see Sophia so grown up and so not like a baby anymore.<br />
By the time we were finally on our way home, she was so tired that she fell asleep in the car which is so not like her. Sophia has fallen asleep in the car about 3 or 4 times in her whole life! We got home and she was still sleeping so I put her down, I sat next to her feeling exhausted but oh so very happy! I looked at my sleeping daughter and thought about the kind of day today was, everything Sophia did today, the walking, the exploring, the going to the bathroom, the interest in being a big girl, how proud she was of herself, all those things are nothing but the living proof of how far she has come. Despite all the surgeries hospitalizations and set backs, Sophia always finds her way back to where she was before and more.<br />
There's still a lot of uncertainties, a lot of unknown territory and probably many more battles to fight, and we will fight them and we will face them over and over again as many times as we need to just to have more days like today.<br />
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Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com1tag:blogger.com,1999:blog-4759734394105792478.post-20735780645532977752016-01-28T19:40:00.003-08:002016-01-29T16:55:15.054-08:00On a brighter note...I needed to write this type of post for a long time, one in which I talk about the wonderful things Sophia is doing and the progress she is making. The last few weeks have been clouded by the seizures episodes and the ESES (electrical status epilepticus in sleep) which haven't stopped but we are working along with the neurologist until we find the magical combination of medicines that will keep the under control for a significant period of time.<br />
Last year I talked about Sophia's communication system the PODD, (you can read about it <a href="http://sophiasworld-sophiaale.blogspot.com/2015/02/the-podd-is-her-voice.html">here</a>). It's a very robust system and Sophia is making good progress with it. She understands that the PODD is part of her and accepts it in her personal space. She started to notice that if she wants something she can get it by asking for help with the book. Sophia has tapped on the picture of the item she wants a handful of times, has said yes or no by putting her hand on the symbol more than a few times. It's a very long process but there is progress, although slow it has been steady. Sophia is a smart and stubborn little girl, all her life we have been giving her what she wants and anticipated her needs. She hasn't had to work for them until now, we know what she wants but we are showing her how to use to book to ask for it. I am very fortunate to have a great teacher who works so hard to make sure Sophia has everything she needs to succeed in communicating her wants and needs. And she will succeed, I believe she will.<br />
Another exciting and certainly unexpected area of progress is Sophia's potty training. I have to confess I thought we were going to be changing diapers for the rest of Sophia's life. I thought potty training was something way too complicated for Sophia to understand. Well, did I under estimate my daughter! We started this process about 3 weeks ago along with Sophia's teacher and it has been amazing! She definitely understands the purpose of sitting on the potty and is so proud of herself when she goes. Sophia is staying dry all night long and for long periods of time during the day so the wet diapers are less. Her teacher is amazing and has helped me so much with this process giving me tips, recording data to find a pattern of Sophia's trips to the bathroom and keeping excellent communication between us so we are in the same page always.<br />
Potty training Sophia has given me a new look at Sophia's future. Sophia has been our baby for seven years, literally. The fact that eventually she could use the bathroom has given me hope. I was so worried about going out to a public restroom when Sophia was too tall and too heavy to be on a changing table (technically, she already is). Now, seeing her so motivated, I can see her being more independent and confident using the big girl bathroom and leaving behind the baby diapers. It's funny how excited I was buying flushable wipes and emptying the potty seats and cleaning them, it made me feel a little like a typical mom. I felt like we are slowly making the transition from having a baby to having a toddler. It made me see once more that my daughter is going at her own pace and I can't and shouldn't rush her. She'll get there, when she is ready she will.<br />
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<tr><td class="tr-caption" style="text-align: center;">Baby Sophia</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Big girl Sophia</td></tr>
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Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com5tag:blogger.com,1999:blog-4759734394105792478.post-88307832127595601772016-01-21T19:25:00.003-08:002016-01-21T19:25:42.555-08:00Trying to get back to "normal"Hello, it's been a while since I last wrote a post but here I am. I left off when Sophia was finally able to go back to school after a few weeks of being drowsy from all the new seizure medications. She was back to the routine and I was ready to deal with the sadness and stress those weeks left on my shoulders and we were going to go back to our "normal," Well, we haven't gotten there yet.<br />
Sophia had a couple of good days at school and still needing naps at home and sleeping all night. The medications seemed to be working fine, she was still sleepy at times but nothing we couldn't handle. Then she started with this very dry cough waking her up at night wheezing, we gave her nebulizer treatments but then she had low fevers so the doctor gave her antibiotics. When she finally was getting better and trying to get back to the routine, she got a bad ear infection and since we just had finished a round of antibiotics, had to start a stronger kind which caused diarrhea. My poor baby had a nasty diaper rash and as if that was not enough, she also got a yeast infection. It was painful for me to see her like that, I can't imagine how painful and uncomfortable it was for her to have it. That took several weeks to clear up but it finally did. Sophia was being more awake, not taking as many naps and everything seemed to start getting better.<br />
No such luck.<br />
For the last two weeks Sophia has been waking up very early. I try to get her back to sleep, sometimes she does and many others she doesn't. When she does go back to sleep next to me or when she takes a nap in the afternoon, I noticed Sophia having short seizures. Seizures! Again!<br />
I understand my daughter has epilepsy and always will. I know that. I know she will always needs medication to control it and I am ok with that. What I am not ok with, is the fact that we don't seem to find the medication that would control it longer than just a few weeks. I am also not ok with adding more medications and dealing with the side effects. I am not ok with having EEGs and seeing my little girl go through the pain and discomfort of putting on and taking off of the leads. But, I have to be ok with all of it. I need to keep until we find the right medication and the right dosage that will control the seizures for a significant amount of time. I want to get excited that Sophia wants to walk everywhere using her walker or holding our hands, I want to enjoy the fact that she is interested in getting potty trained and has succeeded a handful of times. I want to go back to our "normal" and I want it for a period of time longer than a week. Is that too much to ask?<br />
So here we are, already increasing the dosage of one of the three medications we started in November and waiting to be schedule for an ambulatory EEG to see how Sophia is doing at night. And here I am, trying to stay positive and trying to not let this condition get the best of Sophia, of me, of us.<br />
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Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com3tag:blogger.com,1999:blog-4759734394105792478.post-1479764416984171262015-11-17T14:43:00.000-08:002015-11-17T16:27:46.475-08:00Picking up the piecesI 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.<br />
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!<br />
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.<br />
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. <br />
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.<br />
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.<br />
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com6tag:blogger.com,1999:blog-4759734394105792478.post-78400259371007394822015-08-25T18:00:00.001-07:002015-08-25T18:00:20.622-07:00The 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.<br />
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.<br />
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.<br />
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<tr><td class="tr-caption" style="text-align: center;">What a strong girl Sophia is!</td></tr>
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<br />Sophia’s unique worldhttp://www.blogger.com/profile/00871588010855494774noreply@blogger.com5tag:blogger.com,1999:blog-4759734394105792478.post-14921550811704517412015-08-14T07:05:00.002-07:002015-08-14T07:51:16.469-07:00It'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.<br />
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.<br />
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!<br />
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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.<br />
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