Ho Ho Ho...Merry Christmas!

OH.  MY.  GOODNESS!!!  I really didn’t mean to go missing for two weeks!  Things have been so very busy around here.  We’ve had the Christmas parade, birthday parties galore, school, work, Molly Michael’s Christmas program and more.  I am determined to spend the next week getting what I need to get done at work and the rest I will be spending time with Molly Michael, Madie and Matt.  So I will be completely honest and tell you that this will probably be the last you will hear from me until the 26thish. 

Madie’s swallow study went much better than I expected, but of course, I am no expert.  I honestly thought they would have a hard time getting her to swallow anything but I was wrong.  She did really well especially with puree and liquids on a spoon.  She did aspirate some liquids when they were given to her by syringe.  The good news is that when she did aspirate, she would cough to protect her airway.  If she didn’t cough, that would lead us to believe that she did feel that it was going down the wrong way and they call that a silent aspiration.  If she were to have a silent aspiration we would have no idea if she was aspirating or not when trying to reintroduce solids so thank the Lord for that cough!  Our speech therapist Ashley suggested that we start trying to give her 8 or so small bites of baby food twice a day.  We can already see improvements in her “eating” from when we started two weeks ago.  Madie’s head control is getting much better and we are starting to see some improvements with coordination.  She loves her baby dolls and you can now lay one beside her and she will roll to pick it up.  We have taken her out and about to a few different places and she has done great.  She just takes it all in and looks around at everything and everyone.  We took her to her Supper with Santa, which was great by the way, and we took her to the Molly Michael’s Christmas Program.  It brings me such joy that so many people that have been following Madie’s story have had a chance to see how wonderful she is doing.   

Now I will brag on Molly Michael and Trinity Pre School just a tiny bit.  I thought I would talk to Molly Michael about what Christmas means and why we celebrate it.  I am pretty sure by the end of the conversation she had taught me a few things.  Trinity has done a great job of teaching these precious. kids about Christmas.  Molly Michael told me all about the Angel telling Mary she was going to have a “baby Jesus” and how they went to Bethlehem.  She told me that they had to stay in a manger and there was no bed for baby Jesus so he slept on hay and Mary wrapped him in a cloth because there was no blankie.  Everything I asked she had an answer for.  I was really impressed with her interpretation of Christmas. 

We are so excited about Christmas this year.  Last Christmas Madie was only 6 months old and this time last year I expected to have two little girls running around, both of them unwrapping presents, playing with toys and fighting over toys.  While that isn’t exactly how things will be this year, I am confident that it will be the way things will be again soon enough.  We are so grateful for all of God’s gifts that he has given our family this year and we consider ourselves very lucky and blessed to still have TWO little girls this Christmas.  I have no doubt that our home will still be filled with lots of smiles and laughs on Christmas morning.  I know that Molly Michael is looking forward to ONE more Christmas of getting to open gifts for her AND Madie! 

Please pray for Madie’s continued healing.  Also please pray for safe travels for everyone who will be on the road for Christmas.  We hope that everyone has a stress free, Merry Christmas!

With greatest gratitude,

Kristin

 

My future's so bright...

Rejoice in the Lord always. I will say it again: Rejoice!  Philippians 4:4

Our doctor appointments last were wonderful.  The GI doctor didn’t make the changes to Madie’s feedings that we were hoping for but only because he wants us to meet with a dietician.  Hopefully we can get that done SOON but the one thing everyone agrees on is that we need to get Madie off of this 12 hour continuous feed.  The speech therapist believes that if Madie were on several feeds a day it would allow her to have the feeling of hunger and hopefully that would assist in reintroducing things to her by mouth.  The GI doctor also took Madie off several medicines that he felt she didn’t need which Matt and I were OK with.  She is now only getting Baclofen, which is a muscle relaxer, Keppra to prevent seizures and Prevacid.  The best new we received at that appointment was the doctor saying that he thought Madie would recover from her accident.  He didn’t say how much but still he said “recover” so I will take it! 

We started Thursday morning with Madie’s physical therapy before we headed to Dallas.  Phil, Madie’s physical therapist, told me that she was very impressed with Madie and that she had met almost of her goals that she had originally set for Madie…for 6 months!  How incredible is that?! After PT we headed to Dallas a little early so we could stop by OCH to see one of Madie’s nurses that we still keep in touch with.  We saw lots of familiar faces that had taken care of Madie during our stay at OCH and they were all impressed with her improvements in the month she has been home.  Most of the therapists who helped worked with Madie were on an outing but we did get to see Liz, Madie’s OT.  She was SHOCKED at how much Madie had improved.  We will be back at OCH on January 6^th for an appointment and I have no doubt that Madie will surprise them again.

After we left OCH we headed to Children’s to meet with Dr. Castro, Madie’s neurologist.  She has been with Madie since day one but hadn’t seen her since we left Children’s and at that time Madie was still in a moderate coma.  She came in the room and Madie and I were playing peek-a-boo.  Madie was laughing and Dr. Castro’s face lit up.  She said she was so surprised because that is not was she was expecting at all!  Dr. Castro had received the report from Madie’s EEG she had done at Baylor about a week and half before she was discharged from Baylor.  At the time of that EEG Madie had shown some improvements but nothing too major, however, a few days after the EEG she started to really progress in her recovery.  Dr. Castro stated that she had been so sad to see Madie because after reading the reports from OCH she didn’t feel like she was getting better but when she saw her smiling, laughing, holding her head up and moving her arms and legs so much, she was excited!  She examined Madie and kept commenting on how great she looked.  She decided that she would leave Madie’s meds as they are right now, which is the lowest dose for her weight, and then do a repeat EEG in 6 months.  If things look good then she would see about getting her off her seizure meds at that time.  Then she told us that she thought Madie’s future looked GREAT!!!!!! Part of me wanted to scream, “THAT IS WHAT WE HAVE BEEN SAYING SINCE DAY ONE!”  Matt and I have told every doctor that has talked to us about Madie that we understand that while things may not always look promising for her, we have faith that God is in control and that we hope Madie would be one of miracle stories you hear about.  The fact that Madie survived her accident at was a miracle in itself and we have kept the faith that her story wouldn’t stop there.  Just about every doctor has looked at us like we are two crazy people who don’t understand what is going on with their child.  The entire time we were at our appointment Dr. Castro, she look happy for Madie and not like she felt sorry for her and I will never be able to explain how absolutely amazing that felt!  We understand there may never be a 100% guarantee that Madie will make a full recovery but to hear a neurologist say that Madie’s future looks great is the next best thing.  God is so good.

Molly Michael had a wonderful time at Disney Princess on Ice.  We sat on the front row and I was a little worried that my sweet princess would make a run for it and try to join the production, but she sat, waved and watched with amazement.  We went with her friends Sloane and Julia (and their moms) and they were so cute and sweet.  It is so neat to watch their faces as REAL princesses skate and sing right in front of them.   

Tomorrow Madie will FINALLY get her swallow study.  Please pray that she does well enough that we can start to reintroduce things to her by mouth.  As always please pray for Madie’s continued healing.  We are so thankful that all of you are still keeping up with Madie’s journey.  Our prayers are being answered so keep them coming. 

With Greatest Gratitude,

Kristin, Matt, Molly Michael and Madie  

I know I need a tan and you are probably wondering what this picture of Madie staring into space is, but this is Madie staring at herself in a mirror (that you can't see) AND she is sitting up ALL by herself!

And here is Cinderella doing her thing at Princess on Ice...