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.....
