“If you can?” said Jesus. “Everything is possible for one who believes.”
Have I mentioned lately that Madie is AMAZING? She has done really well the past week. We had a GREAT Thanksgiving with the family. Even with a crowded house full of people she was calm and happy. It is hard to believe that a little over a month ago we could have never done that with Madie. She is continuing to show improvements in all her therapies. She can roll to her tummy now but doesn’t have the upper body strength to hold her chest up although she can turn her head from side to side while on her tummy though. Madie is also really moving her arms and legs now and we can no longer lie her down on her pallet, walk away and find her in the same place you left her. She will have scooted off the pillow and will be sideways. If you put a toy beside her she knows to hit it to make the music and lights turn on. She is also opening both hands and starting to grab things close to her…mostly her shirt, blanket and G-tube. So we have to watch her close to make sure she doesn’t yank that out! She still has to work hard at getting her arms and legs to do what she wants, but we can see the wheels turning and can tell that she is without a doubt heading in the right direction. Madie loves loves loves to have all the attention for herself and she watches my every move and would prefer that I am holding her or sitting next to her. If I start to get up she will stick out the bottom lip and scream. She is either happy or extremely mad and doesn’t really seem to have an in between at the moment. She is a smart little lady and definitely has all of us figured out!
Tomorrow Madie has her appointment with her new GI doctor. I am hoping that we will also get to meet with the dietician. The plan with the original GI was to get Madie back to bolus feeds and off of the amino acid based formula. I am hoping that if we can get her back to bolus feeds that we can start doing more things outside of our house without having to take her feed pump with us. So say a little prayer that since Madie’s throwing up seems to be under control that we can start moving back towards multiple feedings instead of one 12 hour feed. Madie should also have her swallow study early next week. We know she is swallowing but the study will tell us how weak or strong her swallow is and what she might be able to tolerate by mouth. Hopefully we will get good results from that because I know a few speech therapists out there that are itching to get some goodies in Madie’s mouth! Thursday morning we will head to Dallas for Madie’s neurology appointment. I am assuming this is just a follow-up because if I remember correctly our neurologist, Dr. Castro, stated that Madie would be on her seizure meds for 6 months and then they would perform a repeat EEG. I am very nervous about going because I prefer to only believe that Madie is going to keep getting better and make a full recovery and I feel like the neurologist is sometimes the one person that can crush those beliefs. The good news is that Dr. Castro has always been very nice and always seemed to genuinely care about Madie and the even better news is that Madie is a COMPLETELY different baby than she was when Dr. Castro saw her last. I am really quite excited to show her off. Please pray that we also get positive results from this appointment.
Madie continues to amaze us a little more each day! I love to look at her from day to day and week to week and see her progress. It is crazy to think how great she looked a week ago and then look at how REALLY great she looks today. We are so grateful that God continues to answer prayers and bless our precious Madie. I will do my best to update Friday and let everyone know how the appointments went. Molly Michael and I have a busy weekend that includes a few birthday parties and a trip to see Disney Princesses on Ice. She has already asked MULTIPLE times if she can be a princess on ice and if she can wear her Cinderella costume. I told her she can of course where her Cinderella costume but you have to know how to ice skate to be a princess on ice to which she replied, “I can, I know how to ice skate.” Wish me luck because I am sure she will continue to try and figure out a way to get on the ice. Please pray that Madie tolerates the ride to and from Dallas and as always pray for Madie’s continued healing.
With Greatest Gratitude,
Kristin, Matt, Molly Michael and Miracle Madie