Thursday, April 12, 2007

Sophia update with Caringbridge link

Sophia's mother sent last week, but I'm afraid my ISP's spam filter ate it and I just found it. My apologies for not catching it sooner!

The picture is from the Caringbridge site, and you can click it to bring up the site. I'm adding the link on the navigation part of the blog to for easy reference.

Dear friends and family,

I have to admit that I don't even know where to start. After this long journey it seems like I would have a lot to say, but my sister Daniela has done an amazing job keeping everyone informed.

First of all we want to say THANK YOU! to my incredible sister for all she did, we don't know what we would have done without her. Not only does she have a husband and three children at home, she also has a job (I hope she still has it!) and a household to run, and she still managed to be at the hospital to support us, helped us with Matias, sent daily updates and answered hundreds of emails. We are so very thankful for her! I feel so blessed to have YOU Daniela as my sister.

We want to also say THANK YOU! to all of you. It's impossible to describe what we feel in our hearts, only God knows, and we always thank Him, our Father in heaven, for you all. We prayed at the beginning of our journey that we would feel His love, His arms around us, we knew that we couldn't do it alone in our own power, He answered our prayers through all of you. We felt His amazing love being pour out on our family through all of you, daily. We felt amazed and overwhelmed and so grateful for all of you. THANK YOU from the bottom of our hearts for your continuous prayers, your beautiful cards, letters, messages, meals, gifts and for just letting us know you were praying. I can't explain with words how comforting your support was and still is. We learned through all this how powerful the family of Christ really is and how God works in such amazing ways.

Now I want to tell you, as you probably already know, that we started our second phase of the journey with our return home. We are so grateful that Sophia is here, at home with us today. Getting home was very exciting but at the same time very scary, no nurses to check blood pressure, heart rate, pupils' reactions, etc. We were here alone with a whole bunch of medicine. The first few days were very difficult especially because Sophia wasn't sleeping through the night and we were exausted. She wouldn't sleep even 2 hours straight, she would cry and make grunting noises all night. But thankfully those days are over, she's sleeping much better now, waking up only once or twice a night.

She still has no short term memory and she is constantly hungry, an effect from damage to the hypothalamus that we hope is temporary (sometimes is not). She eats breakfast and five minutes later she is asking for breakfast again because she feels hungry and forgets she just ate.

Her moods are getting better, she is not so grumpy. She can get more agitated if it's too noisy or there is too much going on. We usually have to keep visits short if they involve children. She gets tired very easily and wants to sleep. But her mind is doing so much better, she stopped hallucinating and what she says now makes sense even though sometimes she has trouble finding the right words. We are seeing a lot more of Sophia's personality coming out and that is very exciting.

We go to therapy (occupational, physical and speech therapy) 4 times a week. She is getting so much stronger. She walks with no problem now, and goes up and down the stairs by herself (we usually watch her though because of her vision). Once a week we go in for blood tests which have been quite an adventure, to say the least. They have a very difficult time finding her veins and when they find one sometimes they can't even draw enough blood for all the tests. Last time they had to poke her 4 times, each time having to move the needle around looking for a vein, it was very painful for her and for us to watch. After all that they didn't even have enough blood and decided to wait until next week for some of the tests. They are thinking that maybe they'll have to place a pic line to make this procedure easier, we'll see.

We've also been busy with doctors' appointments, she has 6 different doctors to "visit". But some of those visits shouldn't be very often, after a while we expect not to see some of them much at all. Our new best friend will be Dr Karmazin, the pediatric endocrinologist, he will be the one keeping a close eye on Sophia for years to come. Right now his challenge has been finding the right dose of ddavp, the medicine that controls the fluid in her body. That affects the sodium level in the blood that is one of the things they have been checking weekly. If it goes to extremes it could be very dangerous. If it is high usually kids should feel thirsty and compensate by drinking more water but Sophia doesn't feel thirst (something else that sometimes happens with this kind of surgery) so it is more difficult to control. We have to constantly remind her to drink water.

Her vision continues to be a source of frustration for her. She loves to color and draw and now doesn't feel like doing that because her vision is limited. This coming Monday there is a teacher from the School of the Blind that will come to the house to evaluate her and see what her needs are to be able to read, write, and get ready for school. We are looking forward to that day.

We keep praying that most of the issues that she's dealing with now will go away with time. It is still too early to tell. We know for sure she'll need the replacements for everything created in the pituitary gland, but we pray that everything else will resolve with time -all the effects of the damage to the hypothalamus and maybe some of the vision. But we also pray that whatever the final outcome, we accept it as part of God's plan for Sophia and our family. It is impossible for us to understand now why all this is happening but we pray for peace in our hearts and acceptance and in the midst of this storm we still praise our Lord and thank Him for our beautiful daughter.

I hope I didn't give you too much detail that was too confusing to follow. I just wanted to give you an idea of how she's doing today. We started a site for Sophia at caringbridge so everybody can follow her progress there. It is at We have some pictures there too and you can leave messages to Sophia or the family in the guestbook if you wish. We will be giving updates there and any specific prayer requests. THANK YOU again so very much for your prayers. THANK YOU for the love and support you have shown us through these difficult times. We love you all!

Veronica, Scott, Matias and Sophia

En espanol, a nuestra querida familia y amigos que no entendieron nada les prometo mandarles otro email manana en espanol. Ahora es tan tarde y estoy muy cansada, pero manana va uno para ustedes. Un abrazo grande para todos. Los quiere, Veronica

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