Saturday, March 28, 2009

A Special Day for Mylee

We treated Mylee to Scottsdale train park today... A couple of groups locally here including Raising Special Kids sponsored a day at the train park. They had all sorts of fun activities planned for all the kids. Mylee played games at the carnival booths and won a prize every time! We attempted face painting but was reluctant to let them finish her lady bug, we ended up washing it off before it was finished. We think her favorite part of the morning was the petting zoo and riding "Oreo" the pony!
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Mylee is continuing to use her medical walker daily. She still needs constant attention when using the apparatus outside though. She had a little tumble on the way out to the parking lot when we left the park. Mylee now has a new "owie" on her left side of her now matches the cut down her nose and the cut on her right outer lip (now healing) from where her tooth bit right through her cheek. We keep telling her we already know she is a warrior princess and that we don't need anymore battle wounds to prove it...... I am sure this won't be the last scar we will see!

Khloe is doing amazingly well! We call her our little chunky monkey!! I keep telling Dave that this must be what it is like to have a healthy child! She last weighed in at 10.5lbs at the doctors office a week and half ago. She sees her cardiologist on Wednesday and will have another EKG. We are confident the tiny hole in her heart has closed. The pediatrician advised that she could no longer hear it. Yahoo!! We have ourselves a 100 percent healthy baby!!!

We are also getting ready to travel to Colorado for Easter weekend. We have been fortunate enough to be able to schedule an appointment with a neurosurgeon at Denver Children's hospital. Dr. W has been interested in Mylee's case for approximately a year now. We have also sent him Mylee's current MRI scans and have updated him on her progression since her decompression surgery. As we all know she has not progressed much... some areas have improved slightly. He has also been updated with our concerns of where we feel she has regressed some. We are hopeful we will get some answers...

We will update more as we get the answers... .but for now please enjoy some new photos of our girls!


Tuesday, March 17, 2009

Happy St. Patrick's Day!!

The girls are growing up right before our eyes! Khloe is almost 2 months old and Mylee Grace is looking more and more like a little girl. Mylee has been fitted for some new AFO's, I can't believe how much she has grown. And Khloe has graduated from Newborn diapers and now is wearing size 1. We had fun this morning taking pictures in their St. Patty day shirts. The dogs even have four leaf clover bandanas on.

We are going to have a low key evening. We aren't making the traditional cornbeef and cabbage meal for the luck of the Irish. We will settle for some homemade hamburgers...

Mylee continues with therapy several times a week. We are scheduled this week for another sleep study and she has a neurosurgeon appointment on Friday with Dr. R at Barrows. We also have another neurosurgeon appointment set up for her at Denver Children's hospital in April. We will consult with this new doctor to see if he can give us any new information and possibly point us in a new direction to help our precious little angel. We haven't given up hope, but we are certainly starting to struggle with the idea that maybe we will have to cope with what our LORD has given us... I, however will never GIVE UP! Mylee deserves only the best and that means I will go into debt if I have to in order to give her whatever she needs!

Khloe is growing everyday. She has really started to smile more and even coo a little. She loves to be held and is almost sleeping through the night. She goes to bed around 10:30 or 11pm and will wake us around 5am to eat. Our new bundle or joy is now weighing 10.5 lbs and is in the 50 percentile. We have a cardiologist appointment set up for her on April 1st. She will have another EKG, however the pediatrician that we saw yesterday for her 6 week appointment says she didn't hear the murmur. This is great news for Dave and I. We were really looking forward to hearing that our new precious angel would have a clean bill of health!

Now that Khloe has had her 1st set of immunizations I think we will be planning our next trip to Mexico. We are looking forward to a little relaxation. It has been a crazy last couple of months. We had so much fun with our family from all of the country coming to visit with us. We have vacancy for the next several months and will enjoy our new family of 6 (dogs included). Our next adventure will be traveling with the girls to Colorado in April. I am sure I will have lots of stories to share.... stay tuned!