Good Morning!

Busy Enjoying Life!

Victoria has been doing very well. It took a month and 2 antibiotics :( to get over the traceitis; but seems to be under control. she has been very busy as usual with therapies. She made a major accomplishment last week with her ability to breathe with her passy muir valve on her trach. This valve helps one with a trach be able to make sounds and speak. Some people may refer to this as a speaking valve. We have been working on this all summer but she just did not like it. She can wear it on her trach up to 30 minutes now. This is the next step for little V to be able to speak and make sounds. The ENT doctor let us know that her vocal cords were scarred badly due to the intubations last year in the hospital and has concerns that they will stay paralyzed therefore, unable to make sounds. We believe and pray for something different:) She seems to be making progress with her whole food organic diet too. She seems more energetic and is much stronger. We believe that she will be crawling very soon too. Also her secretions have been much less with this new diet. Thank God for that one. Anyone that knows Victoria well knows that she needs to be suctioned every 5 minutes or so. That has not been the case lately much less. We have been on a few trips this month one in Miami at the famous Fontainebleau hotel and she went into the pool for the first time. She really likes the water.... We also took a trip to Tampa and she was a very good little traveler. Overall V has been moving right along. We are very proud of her:)

Vita Mix & Homemade Blended Formula!

We found a whole world of nutrition for Victoria last week. I was so excited to receive the new sassy Vita Mix Blender which can blend meats to waterlike substance. Victoria said goodbye to formula and hello to real whole food for the first time. Because she does not eat by mouth we are limited to what we feed her. Or so I thought until I found this wonderful group of many parents online that feed their children real food from the G-Tube. The key is this wonderful blender. I also read this great book "Homemade Blended Formula Handbook" I just love it...... So far the transition has been a good one. I already see a few positive changes in Victoria as she has a bit more energy and is way more regular if you know what I mean:) no more glycerin suppositories...... This past week her ORGANIC diet consisted of Chicken, brown rice, oatmeal, quinnoa, broccoli, apple, pear, carrots, milk, yogurt, olive oil and water. I am so happy that she has tolerated this great food because she has bad reflux. So this week I will try some new foods like, Kale, peaches, Kefier and avocado. I really hope by improving her nutrition we will see an improvement with her immune system and her low T-Cells. We just had some blood work done to check her cells and found them slightly improved from when she was in the hospital. Last October they were 150 and now the are 450. However, the normal range for a child her age would be 1200 or higher. So we have a ways to go but I believe that God will continue to show his power through her immune system too. He has carried her through so much already. Thanks for checking in on us for now that's all.

Ugh.......Tracheitis!

So It has been an eventful week as V became sick on Wednesday. She woke up coughing, coughing, and coughing. She was not able to eat and she was throwing up. She was not herself and was crying most of the day. I had to take her to Miami Children's to see Dr Sanchez-Vegas who knows V extremely well. She is an Infectious Disease Doc and is great with helping Victoria with overcome illness. She said that V has tracheitis and put V on Tobi nebs which is an antibiotic that in inhaled via breathing treatment. So far it seems to be working but V is still not herself. She did wake up today more playful than the last couple of days. And get excited she slept until 5:30 a.m. which is better than 3:00 a.m. the last couple of days. Yes Mommy is tired too:) Hopefully she will overcome this soon and be back to her sassy self:) Also when ever V gets sick or in on antibiotics she gets a nasty outbreak of yeast everywhere. She has it in her mouth again and other places that make it really uncomfortable for her. We are double dosing Fluconizole to help so far we are not winning with that nasty stuff. Victoria has an extremely low T-Cell count in which she does not have the greatest ability to fight virus and fungus. V had blood work done a month ago to see if her T-cell situation has improved at all. I am waiting for the results from her Immunologist Doc. Well that's it for now V just woke up from her morning nap. Stay tuned ..... God Bless

Hanging out with Mommy!

Hello everybody!

It's been a very long time since I have shared our lives on our blog. We have been going through many different stresses the last 4 months. It has been hard to get online because we have been living in a hotel since coming home from Eddie's funeral in April. The hotel only has one computer and everyone fights for it. I really do not feel like it. But I finally got my laptop fixed so I can have internet access. We were totally lost without it. To get back to our story......We came home from MN to find mold that made a huge mess in our home. We had a microbiologist come in and test the mold levels in our home and found that we had to leave ASAP for Victoria's health. She started coughing like crazy. Victoria's health improved while in MN. She put weight on, her respiratory status improved, she became stronger and really enjoyed her stay there. She did not have nearly as many secretions in MN either. So coming home to the mess we did only added to the stress of our family getting over the senseless death of Eddie. That is another topic entirely...... We had a mold remediation company come in and detect the cause of the mold, turns out that a leak was from above. That was fixed and the walls, ceilings, and floors had to be removed and replaced. Our bathroom had to be remodeled and the entire condo had to be painted. We should be moving back home this weekend. Thanks the Lord:) we are so ready to move home. They did the mold testing again once all the old stuff was torn out and everything is clear of mold. Living in a hotel for months really gets old, especially with V's special needs. She really needs her crib back. I think she is really tired of sleeping in her pack & play. She has really been a trooper through all this. Hopefully we can get our lives back soon. Victoria has been trying really hard to crawl. The funny thing is that she does crawl but with her face dragging on the ground. This looks really funny. We are trying to strengthen her upper body via therapies but it will take time. When she had her first heart surgery she was 10 days old and Dr. Scholl made the entrance through her back side and so her muscles and nerves are very weak. Also she was in the ICU for one year very sick after her second heart surgery in which that was a major setback for her to develop motor skills. Her journey to sit, crawl, and walk will be a long one. She still can not eat by mouth yet. I gave her some squash & carrots and saw some come out through her trach. Oops... So we are still feeding her via G-Tube. She recently started working with a new therapist and a passy muir valve which allows one with a trach to vocalize. She has not made any sounds yet since having the trach, so we are hopeful that with the passy she will make sounds. That too is a journey because she hates it and fights the therapist to take it off. She is very strong willed little girl. Sassy to say the least.....

Victoira's 2nd Birthday Party!!

We are so Proud of you Birthday Girl

Happy 2nd Birthday Victoria Faith!!

Happy Birthday Victoria...We are so proud of you....She is amazing and very healthy. We have been very busy with many therapies for her and they really seem to help her. She has also been very busy traveling this year. Minnesota, Disney World Orlando, and Tampa. She is a real world traveler....

In Memory of my Loving Brother Eddie

I would like everyone to remember my loving brother Eddie for his many wonderful gifts..His life was taken so abruptly Saturday night. I am still in disbelief. He had such a love for life. He loved the outdoors, hunting, fishing, and biking. He appreciated the simple things of life. He loved the wind against his skin and the sun on his face. He loved his friends and family so very much. I really do not understand how bad things like this happen to such good people. I pray for peace and understanding. I thank everyone for all of their love and support during this terribly tough time.