HAPPY HOLIDAYS

As you can tell Louie is thrilled that it's Christmas and once again the reindeer antlers have been pulled from storage. Kind of reminds us of the dog from The Grinch Who Stole Christmas. The smile on Luke's face is one of pure enjoyment for the fact that we were told at Maddie's lung appointment this morning that we can take her off both the monitor and the oxygen throughout the day and she will only require them at night when she is sleeping. We will have another appointment on the 27th of this month at which point we are confident that she will be off both 100%. I can not express the enjoyment of finally being able to traverse my own house with Maddie in hand. The freedom of being able to do that is priceless and we can only imagine what it means to her to be done with the same corner of the house 24/7. We just got home and she is whooped and sleeping so as soon as she wakes we will post some new pictures of her without the nasal tubes.
Once again she has reached another milestone that would not have been possible without her strength and all of your prayers, so again we thank all of you for the support and God for granting our Maddie the strength and determination to turn another corner.

Hello everyone; We know it’s been a couple of weeks since we last updated, however we had a rush of various Maddie appointments with virtually every kind of doctor imaginable so time has been a hot commodity around here.

As for Maddie’s progress, she is doing very well. She continues to gain weight slowly but surly and is currently 8 lbs 2 ½ ozs. We have had several visits with OT/PT and they are happy with her progress and continue to challenge Maddie’s range of motion through splints and stretches that Annie and I keep up with at home as well. We are waiting for an assessment to be done at the house next week to determine if Maddie qualifies for home therapy, which were confident she will. The orthopedics want to see her again in 6 weeks at which point we are hopeful they will set some kind of agenda as to correcting her hips which are dislocated, her scoliosis as well as her other contractures. They informed us at our last visit that she MIGHT require surgery in all these areas but basically it’s a wait and see time will tell situation.

On a day to day basis at home both Luke and Maddie are doing great. Luke basically runs the house and demands attention either through smiles that are irresistible or a high pitched shrieks that echo throughout the house. Maddie has found her smile as well although she is stubborn with it in that she won’t share it with the camera. They both seem to thrive when we lay them next to each other, must be a twin thing.

Hope everyone had an enjoyable Thanksgiving, take care and God Bless.