So in September Chris went to Maryland for a hazmat training and Maddie and I went down south to Florida. Chris was going to be gone for two weeks, but thanks to the government shutdown, he was sent home 3 days early. Thankfully they allowed them to cram in the rest of their class so they could get the certification. Maddie and I had such a good visit with family and friends. It did feel very weird, being in the place where Chris and I use to live, without him. But we we're still able to have a fabulous time! Once again, I was nervous about flying with Madilyn. When we went to Boston I had other family members who I could pass her to if she got cranky. But this time it was solely on me. On both flights we sat next to people who ended up talking and playing with us the entire time. She didn't have any problems at all. She is such a trooper and a way better flyer than her mother ;)
We recently had a checkup appointment with Madilyns neurologist just to check in to see how everything was going. Once we finally got back to the room, a new doctor had come in to get our background before our neuro came in. I was filling her in on everything when she stated she saw that the heart tubers had been found back in April. I quickly interrupted her to tell her that those had disappeared. She routinely asked what medicine she had been on to shrink the tubers.....I very proudly told her she hadn't been on anything. She seemed shocked and kind of stumbled on her words for a little bit. I can't even explain how happy I was to see yet another doctor shocked by her progress. We were told from the beginning that these tubers could slowly shrink over time, or they could also stay the same size, or even worse, get larger and cause her to have open heart surgery. The fact that within 2 months they were completly gone just gives me chills. God is so good and is working such big miracles in Madilyn's life. The rest of the appointment went very well and I left with a smile on my face and a pep in my step.
We had Maddie's birthday party a few weeks ago and oh my was it a blast. We had around 40 of our friends and family join us to celebrate. I know the first birthday is a big thing for parents, but for me it was even more than just a number... When she was first diagnosed we heard all the bad. We had no clue what her life would be like by her 1st birthday. All we saw was a happy 1 year old that was kicking this horrible disease in the booty!!! It was a glorious day for our family.
Last week we had Maddie's therapist come and do a evaluation on her development. She did all of the tests/activities and went over her findings. She looked at us and said "you have a medical miracle." Of course I started crying. I know she is our miracle, but to hear a medical person say it just means so much. Maddie rated anywhere from 12-15 months on the testing. So she is actually right on track, if not a little ahead in some areas. Technically with that kind of an evaluation she shouldn't qualify, but because of her diagnosis, she automatically qualifies. We made the decision to see the therapist once a month just to make sure she is still doing ok with her milestones.
We also got word that we will start building our house soon. We can't wait to get our family into a bigger home that is more suitable. This has been an on going process for 2 years. So to see it finally coming around has us soooo excited. We will hopefully start the building process around the first of the year.
I am in awe of this girl and even more in awe of what God is doing in our lives. I have said this a lot, but it truly is a honor to be Madilyn's mother. And I know that can come off cliche. But I am so thankful that God has allowed us to be her parents. God has shown me so much by being her mom. Things that I don't know I would have seen had we never laid eyes on her. This may sounds crazy, but if she didn't have TSC, we would have missed out on these blessings and we wouldn't have seen these miracles. God is so amazing. And I will never be able to thank him for the blessings that I have received through Madilyn.
One more thing... You know how exciting this time of year is?? You know, all the holidays, party's, family get togethers...well a lot of families will be spending this time in the hospital with a sick child. Maybe even being separated from the rest of their children. Please pray for these families and maybe even think of something you could do to make this time a little easier on them. Our family has some things we will be doing and we encourage you to do the same.
Thanks for following Madilyns journey and please keep the prayers going up! We love you all!!
Chris, Heather and Madilyn
