And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him. Colossians 2:16
I know I have missed a couple of weeks and I am sorry. I really mean to update more often and I know that I would update a few times a week it would so much easier and probably take far less time than trying to stuff two weeks of Skinner family excitement into one post! So I will do my best. I actually am sitting all alone in my living room right now. We went to church this morning and then Madie decided to skip her afternoon nap so she is already asleep. Molly Michael and Matt are having dinner at Matt’s mom’s house tonight. So, for a brief moment, it is just me, my laptop and a little Extreme Home Makeover on the TV in the background. It has been on for approximately 4 minutes and I have cried 38 times.
Madie has had a great couple of weeks. We had a great visit with Dr. Semrin, our GI doctor at Children’s in Plano. We explain to him Madie problems with vomiting over the past few weeks. He listened intently to everything we have tried and all the problems we had encountered. We had just changed her formula back to a completely broken down one just a few days before our appointment. We had seen some improvements since the change but we weren’t sure if it was because Madie’s respiratory issues had started to clear up or if it was because of the formula change. We all agree that Madie probably doesn’t need to be on this particular formula. It is designed for children that have a severe milk protein allergy and other issues. Madie had no issues with milk prior to her accident but this formula is definitely the easiest on her tummy. So Dr. Semrin suggested we leave everything as is for now and return in a month. Madie had a rough time on the ride back from Plano and got sick a couple of times and then seemed like she just didn’t feel well the next day. I think that sitting in car seat to and from Dallas just isn’t the best thing for Madie’s muscles. Hopefully we can take some time on our next trip to allow her a little time to stretch out. We have seen big improvements with Madie’s tolerance of her tube feeds over the past few weeks so we are hopeful that we can get her a more concentrated formula after her next visit on March 3rd.
Last time I updated we were waiting on Madie’s follow up swallow study. Thanks to all the snow and ice we had in Texas at the beginning of February, we JUST had the swallow study last Wednesday. I am pleased to report that Madie did great! She had just finished her feed, she was sleepy and the speech therapist who helps with the swallow study tried to hold her and all those things made for one grumpy Madie. Madie doesn’t care for people in scrubs. So if you are planning to try and be friends with her. Wear something besides scrubs. So, I managed to get a few bites in Madie’s mouth and while she wasn’t really cooperating, we were able to tell that there were definite improvements. There was no aspiration. So the speech therapist and the radiologist told us to give Madie whatever she would eat. Well, now comes the tricky part. Now we have to overcome Madie’s sensory aversions. She doesn’t really like the way most things feel in her mouth. Everything she picks up, she immediately brings it to her mouth and then makes an awful face. She has gotten MUCH better though. She will put her fingers in her mouth and seems ok with liquids and purees. So now we will focus on getting Madie to eat things with texture and also using a sippy cup. She seems very interested in the cup but does not have the coordination to suck. I know that just like everything else, Madie will prove to us that she is a fighter and that she WILL eat and drink again! Hopefully these things will happen sooner than later so we can get her off of this tube feed!!!!
In other Skinner family news, we are thinking of getting a puppy. We have decided on a tiny toy poodle. After all my research, we feel that will be the best match for our family. I really think that Madie and Molly Michael will both benefit greatly from having a pet. Matt, while not completely against getting a puppy, is the most nervous about our newest addition. So I feel like that means the puppy will be most attached to him! The breeder we have decided to go with has a litter of puppies due sometime around the beginning of March. Due to their small size these sweet puppies usually don’t go to their new homes until around 10-12 weeks old. So that means that we probably won’t have our new little girl until maybe the beginning of June. I kind of feel like an expecting mom with all this time I have to prepare. We are VERY excited, well I should probably say that Molly Michael and I are very excited. I told Matt I couldn’t believe we would be hearing the pitter patter of puppy paws soon at our house, I pray that we’ll also hopefully be hearing the pitter patter of Madie’s feet as well.
We pray daily that God will continue to heal Madie. We also thank God daily for all the improvements we see. We know that God’s plan for Madie and our family is a great one and we trust that He will continue to support us. Please remember to keep up with Charley Rae’s story. We are so grateful for all of you who still pray for Madie and cheer for her on her road to recovery. As always, please pray for her continued healing.
With Greatest Gratitude,
Kristin, Matt, Molly Michael and Miracle Madie