This girl!

This girl!

Friday, February 26, 2016

I can see clearly now.

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

And she looks great too!

Friday, February 19, 2016

The 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.
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.
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.
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.
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.

Medicine too thick and yucky? No problem!
Too tired to eat? No problem!

Wednesday, February 3, 2016

Mommy 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?!
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.
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!
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.
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.
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.