This girl!

This girl!

Thursday, May 28, 2015

How nice when things work out.

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

Watching the Memorial Day parade.
So cool!

Thursday, May 21, 2015

One medicine is not enough.

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

Thursday, May 14, 2015

A very smooth IEP meeting.

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

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

Friday, May 8, 2015

Happy mother's day to me.

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

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

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

Friday, May 1, 2015

Quality truly beats quantity.

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

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