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.