Madison's Birthday:

June 8, 2010

From the Word:

"Before I formed you in the womb I knew you, before you were born I set you apart." Jeremiah 1:5

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:13-14

Saturday, July 30, 2011

Nothing Wrong

Nothing wrong? Really? Those were my thoughts and words at Madison's 1 year check-up at Spina Bifida Clinic at Vanderbilt on Monday, 7/25. Other than our post entitled "Our Miracle has Arrived," the post from the day Madison was born, I don't think we've had a better title than the one for this post! We often don't hear that Madison is doing just fine and that there's nothing to be concerned about. Typically her reports are negative in nature, gloom and doom, you know. So, to get that response from all of her doctors almost made me skip while I pushed Madison's stroller out of the hospital to the car that day. Here's what made me think we were going to get bad news at Clinic...

As you might have read from my last post, Madison has had some weight gain issues lately. Her appetite has decreased significantly and her little body isn't growing like it should. Her pediatrician has been concerned and has attributed the weight loss to a persistent urinary tract infection (UTI) that didn't get fully treated. Since her June 27th check-up with the pediatrician, Madison has had 3 urine cultures done, all which indicated high levels of bacteria present in her urine. Pretty gross, I know, but Dustin and I have continue to be mystified as to how Madison could keep functioning so well, acting so happy, if she has a UTI. Now, is when I tell you that Madison doesn't have a UTI and urologically speaking, there is nothing wrong with her. Madison's urologists said that her cultures reveal that bacteria in Madison's body has colonized, which simply means, excess bacteria has formed a little gang in her urinary tract; that's why her urine cultures continue to show high levels, consistent with infection. It is likely that the in/out cathing we had to do on Madison when she was a newborn is what introduced an excess amount of bacteria that multiplied and grew. However, since Madison has not had any symptoms of infection, she does not have a UTI; she just has higher than normal amounts of bacteria in her system. She will always have the bacteria present but it does not pose a threat to her bladder or kidneys. In fact, her urologist said after looking at Madison's bladder/kidney ultrasound on Monday, that Madison has the bladder and kidneys of a baby without Spina Bifida! How amazing is that?!?!? So, to re-iterate...there is NOTHING WRONG with our sweet girl's urological system! God has removed this obstacle for Madison and restored her health!

Now, that still leaves the appetite and weight gain issue. At Clinic, they managed to work in a consultation with the dietitian, who is wonderful and gave us news we weren't expecting to hear about Madison...there is NOTHING WRONG! I sat there for a few minutes trying to reason through that because all I could think of was how Madison wouldn't eat, isn't gaining weight, and how that doesn't sound like there's nothing wrong. After answering a billion questions and telling the dietitian about Madison's eating habits, she explained to me what IS going on and her answer made me laugh. What it all boils down to is Madison is a control freak when it comes to meal time. You probably chuckled a little too just then because you know that this would be just one more trait in a long list of how Madison is a carbon copy of her mommy. But basically, Madison does not like it when we shove a spoon of food in her mouth, that's why she was holding it in her mouth, refusing to swallow, and then we'd have to dig it out and usually get bitten in the process. The dietitian said Madison wants to be able to decide for herself IF she wants to eat the food and WHEN she eats it. This is why she has developed a super close relationship with her sippy cup; she can control when she puts it in her mouth and how much she drinks. Plus, milk is a consistent taste as opposed to all the flavors of big people food we were exposing her to and she can still keep her eye on her surroundings when she drinks. Eating involves her using her taste buds and having to focus which doesn't appeal to her highness. There is nothing wrong with Madison physically that is preventing her from eating or growing, she just is super particular on how she goes about feeding herself. The dietitian recommended we try putting blobs of food on Madison's high chair try, no matter how messy, and just leave them there for her to experiment with and get familiar with. When, and only when SHE'S ready, she'll pick them up and feed herself and if she continues to do so, that's our cue she likes it and will be receptive to us feeding her. has worked like a charm. We've done exactly what the dietitian suggested and Madison has eaten better in the last week than she has in the last month. She has even gone so far as to try and grab the spoon out of my hand to try and feed herself with it. We have been decreasing the amount of liquids we give Madison because she developed a preference to drink rather than eat her calories and that isn't healthy for her. So, we're gonna continue to work on her with this and even though I'm gonna have to go back to making Madison's food, per the dietitian's recommendation, we will do whatever is necessary to help Miss Priss get adjusted to meal time and start gaining weight again. But let's be real...the moral of the story here is that we have one headstrong little girl on our hands who is gonna keep us on our toes.

It is so wonderful to be able to report that Madison is doing so well and that her doctors truly have no concerns for her at this time. Her therapist continues to marvel over Madison's progress and her neurologist remarked that her head circumference is perfect, indicating her shunt is functioning EXACTLY as it should be. Madison, in all her funny, quirky, prissy, sweet, and precious ways continues to be a living picture of God's grace and miraculous power. Not everyone can boast they've witnessed a miracle but we can. Our miracle sleeps in the back bedroom at our house, loves sweet potatoes, and wears the most beautiful smile. She has a mommy and daddy that think she hung the moon and a Heavenly Father that loves her even more.

I never forget that so many of you who read our blog pray for Madison, and will keep praying for her for a long time to come. I just hope what you hear and see that happens in Madison's life, every victory she has over her Spina Bifida, every stride she makes in her development, encourages you that your prayers are heard and that we serve a Living God that answers our prayers and works miracles. The Lord has known all along there's nothing wrong with Madison; it just takes us a little bit longer to understand.

Thanks for reading! We just wanna keep sharing about God's blessings in the life of our family.

Be blessed,


Wednesday, July 6, 2011

Madison's Therapeutic Devices

Just thought I'd post a few pics of Madison doing some of her therapy. She has an excellent physical therapit, Christine Taylor of Theraplay, who works hard to help whip Madison into shape.
This is Madison in her walker. She took her first assisted steps on June 22, 2011. One has been ordered for Madison for us to have for home use. I better start padding the furniture. I think she'll be a wild driver like her Daddy!

Madison also has a stander. This is to help her learn what it's like to put weight on her feet. She has to stand it 2 times a day for an hour each time. It has wheels so we can push around the house, which she loves, and has a nice play area for toys on top.

This is a great pic of how the stander works. You can see that she gets strapped in at two points and you can also see that Madison got tired of standing and decided to nap standing up.

I hate that the rest of Madison's life will likely involve some sort of contraption or device. But I'm so glad equipment like this exists to help her. And I'm so blessed that we have a therapist like Christine that recognizes how truly special our girl is and works so hard to make her the best Madison she can be. She is going to do amazing things, people. I just know it!

Ironically, it's time to get Madison out of her stander for the night. Gotta go!