Got proof?

Maybe is the busy days and nights or my possible state of denial or acceptance or just call me crazy but I cannot remember what is supposed to be "normal" and what is not when it comes to development (eventhough I have a 5 year old child) So these past few weeks I was giving some thought into how we are barely, almost, meeting milestones. Especially when I read and see other kids that have CP slighly more severe than Sophie, whether it is lack of verbal skills or less head control; I think that we are oh so close to what is so called "normal" development. I guess my "normal" just became exactly what I see every day in my daughter. To me she is as normal as they come. That was until today that I "got proof". My mom came to visit from out of town and brought my 17 month old nephew and two older nieces with her. They are all staying over for a few days. My little man is super duper cute! a loving little boy. He uses his hands very gracefully, I notice the very precise use of his tiny fingers. He raises both his arms when getting dressed and when he wants to be picked up. When being fed he opens his mouth chews and swallows his food. He has a straight back all the time and sits in the tub, he walks so perfectly! Quite honestly, I look at my little man and as I admire his every move and I think wow, he is BRILLIANT! My little man is over 20lbs at 17 months old, he sits in front of my five year old son while he (my son) reads him a story. His back is straight the whole time. He never wabbled to either side or fell backwards or frontwards while sitting, not once. He picks up a ball from the floor and throws it to me. He wants to play catch. He says: "ball". We went to the playground and he climbed three steps if stairs them got on the slide and said "whee" as he slid down. He then took off running... My little girl laughed and tried to throw herself off my arms a few times as if letting me know that she wanted to run after him. So I said "let's go have some fun there is other stuff we can do". We went back to the slide and I put her on the top of the slide. She laid down all smiles and I held her by under her arms as slid her down and said "wheeee"... When she reached the bottom I saw her laying down helpless waiting for me to pick her up. We did it again and again and again until my arms got so tired that I decided we should pick another activity. After all there is lots to do at the playground right? Some kids were running around, some kids were climbing the rock wall, others were swinging from the monkey bars... We just decided that we just want to sit on a bench and watch. Except that my little girl did not want to do that. Well, my feelings if normalcy began tumbling down and I thought in my head "this playground really sucks!" Well I guess this is proof that yes my daughter does have cerebral palsy and there is no playground around that was made thinking about kids that have physical impairments. Ok... I accept it she is a little different from the other 18 month old kids at the playground. I got the proof. Now I will just think of some things we can do that might be more enjoyable for her.

Diagnosis- Breaking the news...

I wrote this Facebook private message to our closest friends and family after we received Sophie's diagnosis. Hola friends and family, Happy New Year! This Holiday Season was wonderful! we got to spend time with family and friends and had a great time. The kids also received some wonderful presents from everyone. Sophie received a really cool Barbie tricycle. Gregory had one just like that but with Diego, right around her age. There is just one slight problem, Sophie is facing some physical difficulties that will make it very difficult for her to ride it by the time she grows out of it… and that is why I felt the need to write this message to you today. It was a difficult decision to write this message because, let’s face it, we live in a culture where we try to hide our problems from others, we live in a “show off” society. We “show off” the BEST of our lives: Cool cell phones, vacations, houses, cars, we always even “show off” the BEST side of our kids. In this society, we tend to hide the bad and ugly from everyone’s sight but it is different for me this time and I need to tell you now because I am “showing off” my Beautiful and Super Smart Baby Girl who is One year old, wears amazing princess dresses and tutu skirts, even as pajamas and is not able to sit, stand, or walk independently, has difficulty controlling her hand and arm movements and has begun wearing really cool shoes (Leg braces) that will enable her to walk at the moon when she becomes an Astronaut one day. By the age of 7 (I have been told by doctors) she will even pushing around a walker that will help her walk and will get us a really super close parking spot at every parking lot, everywhere we go. About a month ago, Sophie’s Neurologist diagnosed her with cerebral palsy which is an injury inside the brain caused more than likely due to her prematurity. Her nervous system is therefore affected which means the nerves which carry messages from her brain to her legs and arms like to take a holiday more often than not. She is receiving therapy 4-5 times per week by three different therapists, and is seen by 5 different doctors of different specialties about every two months. Obviously, we all have an idea in our heads about what a typical child of a certain age “should” be doing. And so naturally, you are asking us questions (especially we have not seen you in a while) why don’t we put Sophie on the floor to play, sit, crawl, walk, or sometimes giving us recommendations to help her walk faster. Sometimes it is hard for us to explain the reasons because some people react so differently, there is usually a moment of silence, followed by an “I am sorry”, and/or words of encouragement among other reactions. So I just want to say that there is nothing to be sorry about, the definition of “normal” is different for everyone, Sophie is normal and should be treated as a normal child like Gregory or any other kid. We still do and will continue to do pretty much everything like we did before: Playground, parties, sports, etc… Life is good! It is just taking a little bit longer than we thought, but WE ARE GOING PLACES! Thanks for reading…. Now you will not be surprised when you see us wearing some cool devices Hugs and kisses, Lauren

I just finished reading "Kids Beyond Limits" by Anat Baniel

What an amazing book. I recommend it to ALL parents of kids with special needs. You will gain so much from it. To me, this book is a training guide for parents, a must read. I cannot go into details right now because it is 11:30pm and I AM TIRED., but let me just say that I cannot wait to take Sophie to the Anat Baniel Method Center in California in the summer. I know that her life will change for the better with those therapies.

The day I ran a marathon...

At around 5:30 pm, I realized that I was dripping in sweat and as tired as if I had just run a marathon. This was supposed to be my easy day. Since we try not to schedule therapy on Friday, I usually leave Fridays for one of the many doc appointments that we have every month for Sophie. Today, however there were none. It was a pretty slow day up until I got home from getting my son from pre-k. Every night around this same time is rush hour here in our household. There is me, and there are two kids who need to be bathed and fed before 7:30 pm so that they can have their bedtime story and then fall asleep so that my mommy time can begin :) Today however I was feeling like I was running a marathon during rush hour. I decided to give the kids bath together so that Sophie got a little water play time. As soon as I decided to pull her off her bathchair she cried hard. I was already celebrating the fact that she had not thrown up today. I celebrated too soon because as soon as I put her down on the bed to dress her she began to gag, once again. I have become somewhat of a professional in managing my daughter's vomit episodes, she has been throwing up almost every day now for the past two weeks due to her reflux and overactive gag reflex. So as soon as she shows the slightest gag, I detect it and run to the sink as fast as I can in order to limit the amount of vomit I will need to clean up later. We are running low on pillows, by the way. I took two pillows off duty because they were vomited on. Sorry to be so graphic but this is exactly what happens around here. Actually it almost always happens around 4am so I was lucky today. So after cleaning up and dressing both kids I sat down to feed them, one at a time. I realized then that I was sweating so much, and I felt as if I had just run a 5K marathon. As I see their sweet faces now that they are both asleep I see that running the marathon today or any day is all worth it. They are totally worth it. One day I will look back at all this vomit and just think, ahhhh.... it was all worth it.

The road that led us to starting a fundraiser. ..

Many of our close family and friends might be wondering why we decided that the only way to get help for our daughter's medical expenses was to start a fundraiser. What could be happening in our lives that made us become so humble as to put our story out there for everyone to read and ask the world for help. On this post, I will answer those questions. We thought about it long and hard... If politicians go all around the country asking for money to fund their campaigns. Don't forget that simple quesion when you file your taxes, would you like to donate $3 to the political campaign? Yes, maybe millions of Americans say yes to donating $3 to raise funds so that someone can make their way to being President. Granted that someone is a college graduate with years of work behind them and a fat bank account that they have built up from their years as Senators. Here we are over a year into physical therapy and yet we haven't had the kind of progress we would have expected. Sophie is still not rolling over, or sitting, or crawling, so the standing and walking seem to be further and further. I still wonder if it will really happen. It really sucks that she can't do those things because she really wants to walk and be mobile. She often gets frustrated and starts crying when she tries really hard to stand or reachfor toys, and it sucks, it really sucks to see my daughter struggle all day and every day. CP also affects her sleep and eating and pooping, Going #2 is a daily battle for her. Being the kind of person that I am I began to investigate how and what tobdo to help my daughter. I came across a blog called unexpected fortune. This is where I read about Anat Baniel and her almost miraculous work with kids that have special needs. I immediately purchased her book Kids Beyond Limits and started reading it. I was convinced by the middle of the book that this method could give my daughter the help she needs to walk. God had put us on the track to success. Now of course nothing comes easy. Their center is in California. It will cost almost $10k to make a 2 week trip between expenses and therapy. I talked to my friends and my sister. They were happy that there was help for my Sophie. There is someone out there who can help help become an independent adult someday. Now the trick is that the earlier she can receive therapy, the better chance that she will walk. You see, by age 3, the human brain is already 80% of its adult size. During the first two years of life it is also wired to learn many complicated tasks like walking. So this is when I realized that the clock is ticking for Sophie to be able to learn these things with ease. So my sister was telling me about a mom that was doing a fundraiser online to buy a van with a lift in order to transport her son who has cerebral palsy and is on a wheelchair. She said to me: Do you want to ask for help now and help your daughter walk or do you want to do this later when you have to buy the van with the chair lift that costs over $50k. That was my turning point. I want my daughter to overcome her challenges. I know that there are no gurantees, but I have to know that we are doing everything we can to help her. Even if it means asking others for help. Wouldn't you do the same for your child? ">

Dolphins, Florida, and Cerebral Palsy

Turns out that I have a "BEHIND THE SCENES CREW" (that is what I will call my support team cause it just sounds so cool). These are a group of people that is composed of friends and family that really care about us and Sophie's well being. Well one of my cousins sent me a Facebook message yesterday telling me about a place in the Florida Keys that does Therapy for kids with special needs with Dolphins. Very cool, right? I called them today to get some more information because my cousin also said that they have scholarships available. Here is scoop: they recommend that the child is at least 3 yrs old to start. Their programs are family oriented which means that siblings are encouraged to participate and it is free for them. Their programs have much success with helping the child with verbal and motor skills. They have a 5 day program with a cost of $2200. Parent are present with the child in therapy at all times. I hope to bring Sophie to experience this program when she us 3. Here is their website in case you want to get more info, by the way I am NOT paid for anything I mention on my blog. This is free advertising based on my very own research :) http://www.islanddolphincare.org/ Phone number: (305) 451-5884

Anat Baniel Method

Kids beyond limits... I bought this book on Amazon.com and I cannot put it down. Of course, with two kids to take care of, I am only halfway thru reading it after two days. It looks very promising. I even mentioned ut to our OT therapist today and said that she had never heard about it before. On this book, and based in my understanding of what I have read so far, Anat Baniel talks about therapies that teach the brain itself rather than the muscles to perform their normal functions. For example, during therapies (PT) Sophie is put on the walker or gait trainer even though she still has not mastered to roll over or sit. ABM is nothing like conventional therapies.The book teaches about 9 essentials that we must follow to help any child, nit just children with special needs, reach beyond their potential. So far I have read about Essential 1 and 2. MOVEMENT AND SLOW. It all makes sense and I have already begun applying the essentials to our lives. I really trust that after I finish reading this book, our lives will benefit from what I learn and I will be better train to help Sophie reach her full potential. I will post more details as I read thru this book and discover how it can help me and other parents of children with special needs. I do feel like the clock is ticking for Sophie. She will be 2 soon and I have not seen much improvement of her motor skills in her legs. She has made marked improvement in the use of both her hands. I must read fast :)

A little prayer...

Dear God, Thank you for my beautiful children. For them, I live everyday. They have made me who I am, and encourage me every day to become a better person. You have shown me that nothing comes easy in life, at least not the things that mean the most to me, to my heart. Please guide me to the tools that I need in order to my job well. Please give me the strenght that I need to care for my family even when I am sick or have not been able to sleep all night. Please give me the patience that I need when one or both of my kids wake up every hour because they are sick or uncomfortable. Plesae help me find the tools to teach Sophie how to be independent. Help me do all this with aa big smile on my face and an awesome attitude. Amen

Bathchair has arrived!

As excited as I was to get this bath chair I had no clue having it would make me feel this way.... Sophie no longer fits in her infant tub so I asked the therapist what everyone uses and she ordered us a bathchair through the early steps program. I know how this is going to make my life easier and Sophie's life happier as she can now take baths in the big tub like her brother. I see it and I think to myself if this is permanent, if we really need it yet. Am I in denial? I tried it for the first time snd she HATED it!!!! She cried the whole time she was on it. Her spastic muscles got the best of her and she was stiff even on her trunk where she is usually low tone. I am afraid to try it again.