Patience is a Virtue

What a crazy week we had . A few days after coming home from the hospital with Emilia , she decided to take apart the fixator.  During the night she unscrewed almost all of the nuts and bolts holding the fixator together. The next morning we found nuts and bolts EVERYWHERE and she was not talking . It seems she became a little bored and thought it would be cool to unscrew everything . Luckily she did not do too much damage and everything was able to be re attached . We have since put the fear of Dr. Standard into her (along with a few other fears to keep her from touching it again ). Dr. Standard actually thought this was pretty funny since they have never seen a child do this before. He said the saving grace was that the ulna was not surgically seperated yet and this this prevented her from being in excruciating pain . ( the first phase of the surgery was to seperate the distal radius and reposition her hand . Phase two will take place on May 23 to seperate the ulna and start the lengthening process). So far so good . She has not attempted to touch her arm at all ! ( Alex is studying to be an orthopedic surgeon so Doctor S. said it would be OK for him to shadow at Emilia's next surgery . He will also spend a month shadowing in the clinic and other surgeries. The surgeries Dr. S does are very complex and unusual , so Alex is very excited to see procedures he would not be able to observe elsewhere.)

Teresa... I was patient . I really was . It helped that I was very busy with Emilia's surgery and all the mishaps along with a lot of Doctors visits in the past few weeks for all of the girls. Not that I was ignoring her health or severity of her condition , I was just letting God be in control . Everything that must happen for a transplant , along with everything that must be in place at home is tremendous . There is no way I could even begin to orchestrate any of it . I knew when the time was right in Gods eyes CHOP would call and things would move on . God knows that patience is not one of my strengths . I wanted to be on the phone weeks ago calling CHOP and scheduling everything asap. But it somehow did not feel right .( it was almost as if God was saying, " Just give me a little more time ") . I needed God to tell us the next step and when it would be . So I was patient and God took care of the details . We are going to CHOP on Monday for tests, (EkG., Echo ,blood work ,and a stress test ) and visit with Dr. Hanna . After this the MRI and Cath . will be scheduled. This particular Cath and MRI are a very big deal . This will be the determination as to whether Teresa will or will not be listed for a new heart . These 2 tests will calculate the amount of pulmonary blood flow. The benefit to the transplant team, and to us, is that we will have two independent ways to calculate the health of the lung vascular bed. The risk is that it is a longer procedure and longer anesthetic, by about 2 times, along with a longer recovery time . We are very optimistic that Teresa's lungs have improved and she will be listed for a heart . We are gearing up for another very emotional week. The one thing that has never changed over the past 1 1/2 years is Teresa's magical personality . Her sweet little crooked smile and sassy personality along with her strong ( did I say strong , I meant S T R O N G ) Will have brought us so much joy (and at times much frustration too) . Her strength has given me strength to face many challenges . There have been times when she has not felt so great but she has never lost her LOVE for life. She wants to do EVERYTHING and does not like it when she is told no . We are still working on who is the boss , me or her , but I have told her when it becomes time to really fight and be strong ...SHE will be the BOSS, along with GODS help . Praying for Teresa's miracle to happen very soon and for our "Happily Ever After"...