After reading that email from my dear friend, it hit me...this is so right. This is the way we do things. We find the most difficult path and that is the route we take. My parents and Brian's parents are probably shaking their heads while reading this...we never do things the easy way; we never give up when the going gets tough and we always accomplish the goal. In this, I feel comfort in knowing that Drake and Kennedy will accomplish the goals in front of them while traveling down this tough path.
Today I met with the developmental doctor who had seen Drake previously in the NICU. She, just like the doctors and nurses, was floored by his recent MRI. She had reviewed his chart and has high hopes for him. We are scheduled for an appointment to begin going to her clinic in December; we will continue the intervention treatments we are currently doing here in the hospital. She was pleased with his progress thus far and when I showed her a picture his MRI, she was in disbelief of the differences she saw in Drake verses the MRI.
Kennedy has been off of her nasal cannula for two days now and she is doing great! It is wonderful to see her pretty face without the clear tubes blocking it. She is still working on her bottle feeding because she battles with reflux at every feed.
Pictures:
1) Drake
2) Drake
3) Kennedy's bath
4) Kennedy
You and Brian are such an amazing set of parents. Drake and Kennedy are so very lucky. Your faith and strength makes me so very proud of you both. The babies look great and God has big things in store!
ReplyDeleteLove you all,
Kelley
It certainly has all the appearance of God having His hand on setting Drake as an exception. I hope he also continues to sooth your soul. For me, in my worst moments of fear and anxiety the more I can remind myself of Who God is and what I believe to be true the more peace comes over me and I enjoy the good moments more and manage to get through the scary ones with less emotional meltdown. I still have hard times, but I am able to regain my balance much sooner.
ReplyDeleteDrake has only just started to fight... he is going to show all of us what can be done with God in his corner... we just all have to keep believing in him, knowing he has this with God's help...
ReplyDeleteDrake and Kennedy are going to make a huge difference in this world... they are already touching lives all over... and as they get older, they will just keep touching lives.
Our God is a BIG GOD!
I've lost count if the number of exams, tests, and assessments performed on my son, the doctors reporting that the results were failed/abnormal, only to have the doctors actually look at my son and scratch their heads in befuddlement as my son does everything they just reported he would never do. A child's charts just simply don't describe his function--what he can do. Drake hasn't read his MRI results! With the faith and support of determined parents, access to early intervention therapy, Drake's own resilience, and the goodness of our Father in Heaven, Drake will reach his own full potential--without being defined or limited by a peice of paper. Think about it: every child is a unique child of God...it is just silly to define and label him by a diagnosis. Although it may seem hard to imagine now, you will find more sweetness, more tenderness, more strength, and more joy on this new journey than you ever dreamed possible. I remember the start of our similar journey being filled with heartache, as you may be experiencing now, but I just want you to know that LIFE IS GOOD! This journey, though uphill at times, is beautiful. If you find yourself with a moment to spare, google the song "beautiful heartbreak" by Hillary Weeks on YouTube--I found the lyrics to be meaningful during our picu battles. Love to your family from ours.
ReplyDeleteYour friends fiancee' is a smart cookie - they are so right...Drake is going to meet every expectation we set for him...
ReplyDeleteBecause you know my baby girls so well, let me tell you...no one ever told her having one leg longer than the other would be difficult...was she clumsy when she was little - oh my was she ever, but we found what she needed (Mr. Gary putting a lift on her shoe) and she was off and running like the others...she is probably one of the best athletes most people have seen for a 12 year old with a physical difference (notice I don't say disability - its only a disability if you let it be!)
Then there is Ali - no one ever told her having a learning difference (being dyslexic) meant she would struggle in school... She just knew she went to a different class to get some extra reading help - and now she sits in the top 10 percent of her class. Has it been easy - no, but easy doesn't drive her...she takes the PreAP and AP classes knowing she might have to work five times harder than everyone...but she has a support system that will lift her up even if she falls...
That's what Drake has too...he has defied all the odds the doctors said he couldn't. In the Jason Mraz song I told you about earlier, there is a part that goes...
... "when you're needing your space to do some navigating, I'll be here patiently waiting to see what you've found...Cause even the stars they burn, some even fall to the Earth, we've got a lot to learn, but God knows we're worth it..."
Drake showed those doctors he could defy medical science by not peeing for so long... God knows the path He is navigating for Drake and we have the joy of watching him fly Annie! Looking at pictures of both you're sweet babies makes me excited about their future because they have the BEST parents to guide them through their journey!
Love to you all and Syd says hug the babies for her...
Yvonne and Syd
I can never get enough baby bath pictures for of my kids...they are just so cute in those lil tubs. You are so right, Kennedy is such a darling! And I am in love with Drake's chubby cheeks.
ReplyDeleteI wanted to say thank you...you have encouraged me through this blog to be a better mom. By reading your struggles and triumphs I have discovered how much I take for granted in my children. In prayer last night the Holy Spirit gave me a new attitude of gratitude ...I am going to try never to complain again about the small things like Trey not sleeping through the night or Mav talking too loud...I have realized that not all parents have the ability to be home or near their kids to cuddle them at any hour, and some parents long to hear their child's voice. It seems so simple--don't complain about your blessings, but somehow its a human challenge not to look that gift horse straight in the mouth! I am so grateful to you and Brian and your sweet babies for showing me the light.
God does have big plans for your family, he is already working through you all to change hearts, minds, and lives. Prayers continue!
Maybe God is asking Drake in his own way to say to MOVE to that mountain. The same power that raised Jesus from the dead is in you and can call great things out in Drake. I have an 8year old daughter that was a preemie. She didn't have the struggles that your treasures have had, she had different ones. We were told she would have hearing loss, vision loss, speech and learning delays. She has none of those. She is in 3rd grade with straight A's and talks all of the time. God is not limited by Drs opinions. How cool is that? I wish I could go back 8 years and tell the terrified me to not let the Drs speak death over her abilities, but only life. I would ask them to call out God's best for her. I am praying for your beautiful family! I know it's so hard.
ReplyDelete