Taking the good with the bad!

We found out that Victoria has a broken leg, possibly fractured in 2 different places. For sure above the knee "the femur bone". They scanned her whole body and we are waiting to hear the final results. She had physical therapy Monday afternoon and was very sore after that. Crying and fussy and unable to move her leg. It's very hard to watch her in so much pain and it seems to be getting worse for her. She is not able to sleep. We really do not know what to make of this. It is like waking up from a bad dream and hoping it all will go away. I really just do not understand why such a little baby has to suffer so much. I keep praying to God for peace and understanding.

Getting better every day!

Well, we made it through another uneventful week with Victoria. That means things are still heading in a positive direction. She is very playful and energetic to say the least. We have been getting her out of the crib a couple times a day. She works with Occupational and Physical Therapist's every day. She has been laying in the crib pretty much for the past 6 months so she has a lot to catch up on physically. The doctors weened her off of 3 different diuretics this past week. She is only on one now called Lasix. This week she will be off of her methadone and ativan. We have been weening this ever since she was last paralyzed and sedated for her trach issue. Also Victoria is off of the vent 8 hours a day and doing fine with that. The doctors want to see if she can go home off the ventilator or maybe just for night time. Thank you for all your prayers we really appreciate it. We will keep trucken along and update soon.

Prayers from all over the world!

We have been supporting a missionary from South Africa since 2005 called Glory Power Ministry founded by Don and Myrna Paprocky. They are an awesome couple of God that we meet in Tampa Florida when we lived there. They have been praying for baby Victoria since before her birth. We love you guys! Don was telling Eddie about a young man in Africa named Alloy that prays for Victoria every morning. That is so awesome to hear and we are so excited to know that people all over the world are praying for our little angel. Thank you Alloy.

Another Good Day!

Another day worth talking about. I am so proud of Victoria.... They took her off her breathing vent that is hooked up to the trache for an hour and just gave her oxygen. She did so well. They think that she may go home without the vent being needed. That is great news for all of us. Now on the other side somehow her sedation med(methadone) fell off her charts and she has not received her methadome for over 24 hours. We just found out about it. Victoria has been sweating severely and going through with drawls but honestly handling herself very well considering. You have to ween very slowly, they have been taking away by 10% dose daily. On Sunday her Valium fell of her charts and she got really sick. I can not wait until she is off all of these sedation meds. Stay tuned for more updates. Thanks for all of your support and prayers.

Daddy's Girl

Update!

Hello all, Victoria is doing good for the most part. She had a really good weekend until Sunday late afternoon. She has been fighting fever and high heart rate again. She is dealing with being weened from the sedation meds from her surgery. She has been very restless and unable to sleep last night and today. The with drawls are just part of the territory and we know they will not last but for a few days. She is also teething too which makes it hard. Also we think that she has ringworm. The doctors won't have the test back for 2 weeks to confirm but they are treating her with anti fungal medication until then. Ringworm is not a worm, its a nasty rash on the skin. Hers is on her face and is spreading to her neck. It can be very itchy to say the least and the doctors say it will take about 6 weeks to clear it up. It is very contagious and we have to be very careful not to spread it. The doctor gave her face cream Saturday for part of the treatment but she had a reaction to it. What a mess that was for a few hours. She was itchy and red and swollen all over her face. She was thrashing around the bed like she was laying on ants. When we stopped using the cream it went away THANK GOD! We are praying and believing that her week will be as good as last weeks. Thank you for all of your continued prayers we really appreciate all of the support.

Abuelo Junior and Abuela Connie visit from Venezuela

Getting Better Day by Day !

Victoria is making good progress. She is feeling better each day. We have her sitting up throughout the day playing and moving around as much as possible. She is doing great with the trache and her neck is almost healed up. The docs have been weening her vent settings each day and the goal is to have her off the vent next week, meaning she will be breathing on her own. So far she is agreeing to the plan. The docs also have been weening her off of the sedation meds, she also has trouble with this but so far she is handling it well. We thank you for your continued prayers for Victoria.

Supporting Moriah! We love you!

I received blue ribbons from Moriah Nelson's mom this week. Her name is Victoria too. She has been a great friend to me and has helped me along the way with Victoria because much of what Victoria is experiencing Moriah has already gone through . We are wearing them around are wrists and believing that she will be home very soon. The blue ribbons will stay on until she is at home where she belongs. Please continue to pray for Moriah she has been through a very similar journey as Victoria. We Love you Moriah :) http://www.momentswithmoriah.blogspot.com/