Long Overdue Updates: Physical Progress

Recently I've posted a few updates about Madison and what she's been doing but I've not updated anyone on her physical progress. This past week has been full of therapy appointments and evaluations so I thought it would be a good time to share what we've been learning about Madison and her progress as of late.

Now that Madison has passed her 6 month mark, (she's currently 7 1/2 months old) her evaluations and consultations have picked up considerably. That's because she's reached the age where clear developmental milestones could be observed, both cognitively and physically, and where progress or the lack thereof is easily detected. While we have certainly appreciated the expertise of the doctors and program coordinators that have been intensely evaluating Madison over the past month, we have grown very weary of the negative reports we've received on how Madison is doing. She has gotten less than glowing reports on more than one occasion for not doing the things she's supposed to that we see her do all the time at home. But all it takes is one missed action, one unobserved criterion and she is scored down and we are bombarded with all the deficits in her development. Bottom line here is, I'm so tired of everyone focusing on what Madison CAN'T do rather than what she HAS been able to accomplish. Here are some of the milestones Madison is struggling with:

1. Sitting up- she will only do it for brief periods of time and not consistently. It is clear that she still lacks the trunk/core strength she needs in order to hold herself up like she should.

2. Holding objects- Madison can hold objects but apparently for not long enough and she doesn't know how to transfer from one hand to the other. She rarely plays or uses both hands simultaneously to play.

3. Feeding herself- at this point Madison should be able to hold her own bottle and feed herself with it. But since the holding is an issue, she's not able to do this one.

4. Bearing weight- Madison's physical therapist has confirmed for us that Madison does not feel anything from her knee caps down. While this will not impede her ability to walk in the future, it does make it more challenging for her to bear weight on feet she doesn't know she has down there. A scary aspect of this is Madison's circulation- which is poor. We constantly have to check her little feet to see if there's proper blood flow. Certain positions we have to put her in to play cause her feet to turn blue, and I mean blueberry colored blue. It doesn't bother Madison but it's unsettling to see. Massage is really the only way we can help her with this issue.

5. Indwelling thumbs- Madison tucks her thumbs inside her clinched fists all the time. Obviously, this makes it impossible for her to play and hold things. The therapist says she may be required to start sleeping in thumb splints- a cast-like glove that will extend Madison's thumb to the point she can't tuck it in her fist.

6. Tendon shortening in the arms- unrelated to Madison's Spina Bifida- this is pretty noticeable when we watch Madison play. It's as if her wrists can't extend and her arms are always flexed because they've just run out of tendon to stretch with. Therapy will help with this as she gets bigger.

7. Rolling over- this was something Madison did several times when she was about 4 months old but has quit doing now. She only did a tummy to back roll, never a back to tummy roll. Hopefully as she strengthens those little tummy muscles, she'll start rolling more.

As you can see, there's a lot of things Madison needs help with. But praise the Lord, Dustin and I have learned about a million and one things to do with Madison to help her catch up with her physical development. I feel like I could start a second career as a physical therapist- ha ha. We will do whatever is necessary to assist Madison and provide her with the opportunities she needs to grow strong and tackle these physical obstacles.

Now...on to the list of what Madison is doing wonderfully...

1. Head control- surprisingly, Madison has developed great head control which is odd because typically in order to have good head control, babies must develop good trunk control. Madison is lacking good trunk control but can hold that little head up just fine.

2. Social development- evidenced by her precious smile and positive response to all those who talk and play with her. She's got the sweetest, funnest little personality and she is a true joy to spend time with. I can't wait to see what kind of little girl she'll become. She's so into everything that happens around her and doesn't want to be left out. Perhaps we have a social butterfly on our hands.

3. Cognitive development- Madison tracks objects well, responds to sounds and commands, and understands what's going on around her. She without a doubt knows who Momma and Da-Da are and it thrills me to catch her looking around for me or see her light up when I come in the room.

4. Feeding- Madison aka Chunky Monkey has an awesome appetite for foods that Dustin and I would never touch. We have purposely tried to introduce her to healthy foods that we never gained an appreciation for in hopes that she will continue to enjoy them as she gets older. At her 6 month check-up, Madison was in the 92nd percentile for weight. That means 92% of babies weigh less than Madison. Great news considering we were scared to death she would be underweight at birth and then struggle to maintain weight early on.

5. Leg strength and movement- If you've seen Madison, you have noticed her legs which are ginormous! Thunder thighs would be an understatement for how large they are but they are so stinkin strong! She gets all excited when she gets laid down for a diaper change and those little legs just go to town. I can think of two different occasions where I was not able to bend her legs to put her pants on because she had them flexed and wouldn't let me- I guess she was showing me who was boss. I feel in my heart that Madison will do better than is expected with walking because of the strong legs she's been blessed with.

So, while we have a lot to work on with Madison, we have much to be thankful for in regards to Madison's progress. It is overwhelming, the tasks of providing Madison with the help and care she needs, but I would go to the ends of the earth, empty our bank account, exhaust myself, and forgo any desires of my own to see her succeed and grow into the strong and precious girl God has planned for her to become.

I would simply ask that you continue to remember Madison in your prayers. We desire that she continue to glorify our Father through her development and show the many doctors and medical professionals that are watching and waiting for her to fall behind, that she can do all things through Christ who strengthens her. Philippians 4:13

Til next time,

~Mandy

Madison's First Christmas

The six months between Madison's birth and her first Christmas passed so quickly and we were so excited to be celebrating this holiday with our sweet girl.

Madison had her own Christmas tree in her room. It truly brought my heart joy to watch her as she saw it for the first time- her little eyes got so big- it was as if she was thinking, "What is this amazing, shiny thing in my room?" Nana (Linda, Dustin's mom) bought her two Baby's 1st Christmas ornaments to hang on her tree. The rest of the ornaments were decorative balls and ornaments I made from paper and ribbon. Grammy (my mom) and I, two of the most sewing-challenged people to ever live, somehow managed to cut and sew a tree skirt with fabric left over from Madison's bedding that was made. We were so proud, and though Madison didn't care about it, I will be sure to let her know one day that we lovingly put that tree skirt together so her little tree would look pretty in her room.


Up until Madison arrived, Christmas holidays have always been divided between my family and Dustin's family in Chattanooga and Brentwood, respectively. We decided this would be the last year to travel to each family for Christmas since we'll be having Christmas at our house with Madison next year. Before Christmas we spent time with Dustin's family and officially kicked-off Madison's holiday season with a trip to Cool Springs Mall to have her picture made with Santa. We were in line for 50 minutes waiting to get to the see the Big Guy. While waiting, Dustin and I were discussing how he must have the most miserable job in the world. Santa's cheeks were rosy but I'm pretty sure it's because he was about to melt in the hot, velvet suit he was wearing. But he was a pretty Santa, nonetheless. Madison woke up just minutes before we put her in Santa's lap so she had a pretty zoned out expression on her face. But I thought it turned out to be a precious picture and I cried when I saw it for the first time.


Some of Dustin's family came over to his parent's house on Christmas Eve for dinner and a mini-Christmas. Madison was showered with gifts and it was fun for a while but she wore herself out and zonked out in Aunt Diane's lap from all the excitement.


To our surprise, we woke up on Christmas morning to find a white Christmas outside the windows. I could not have been more thrilled that Madison's first Christmas was a white one.


We bundled up Peanut and headed over to Uncle Stacy and Aunt Marilyn's house for Christmas morning festivities. Madison got some super cute clothes and awesome toys from the family and we all enjoyed a wonderful Christmas morning breakfast.


On Christmas afternoon we drove to Chattanooga to spend the next few days with my family. Madison had fun spending time with all her cousins and she got some more cool gifts. A couple of my favorite things she got was a voice-recorded storybook of The Night Before Christmas that Madison's great-grandmother recorded for her. She also got a very cool kick and play piano that attaches to the foot of Madison's crib for her to kick at and work her legs.

All in all, Madison's first Christmas was wonderful- we just felt exhausted though from the traveling. No longer can Dustin and I just pack up and go out of town with one overnight bag. The amount of stuff we had to pack to be gone for 10 days was unreal and we were pooped after loading it, unloading, and reloading it over and over. She needs her own set of luggage!

We are blessed with wonderful, loving families who took the time to make Madison's first Christmas a special one. Since we will be in our own home next year, we look forward to beginning new family traditions with Madison that will help her to learn the true meaning of Christmas and celebrate the birth of Jesus Christ. Madison will be 1 1/2 yrs old next Christmas so I can't wait to watch her experience Christmas in a whole new way.

As of today's blog date...only 348 days til Christmas 2011!

Be blessed!

~Mandy

Long Overdue Update: First Foods

So, it's been about 4 months since I last posted and while I hate it's been so long, you have to forgive me considering the circumstances that have kept me away. Life just got too hectic and there was no spare time to do anything extra- like blogging. Between Dustin's back surgery, my return to work, my overwhelming graduate school load, and parenting, time just got away. But, the holidays and snow days have allowed me to recharge my battery and now I'm ready to deliver Madison updates on a more regular basis.

In early December, right as Madison turned 6 months old, we introduced her to her first taste of "real" food. I decided a long time ago that I wanted to make Madison's food in order to give her a most healthy start to mealtime. I'll give you a run down of what I've made and her response to each.

Green beans were first...she hated them. Gagged herself and threw up (not spit-up) everywhere. Now she's used to them and doesn't mind eating them.

Then, peas...she wasn't too keen on them at first but they grew on her.

Next came sweet potatoes...YUMMY in Madison's tummy! I thought they were her favorite until...

Butternut squash...she loves it! Too bad it stains her bibs like no other.

Tried chickpeas next, you know, to give her some good protein...she refuses to eat them.

Lima beans have been the most recent addition to the menu...she tolerates them but they're no butternut squash.

Madison's reaction to her first bite of green beans.

I wanted to be sure she was good and used to the veggies before I introduced the fruits- they (meaning drs. and baby know-it-alls) say some babies refuse to eat veggies once they've had a taste of those sweet fruits. Didn't want that happening to Madison so after three weeks of veggies, we decided it was time to give her her first fruits.

Peaches were first...took some getting used to but ultimately I think she likes them.

Applesauce was next. I was so impressed that I made applesauce that looked just like the stuff you'd buy in the jar. Madison was not impressed. She gags and refuses to swallow it- she just holds it on her tongue. I think it's the texture that bothers her.

Then, we gave her mango...I would deem this her favorite fruit so far. Not sure what fruit we'll give her next.

All in all I am very happy about our decision to make Madison's baby food. It is time consuming and sometimes messy, but well worth it to know she's eating healthy and we're saving money.

It has amazed me that without having ever eaten "real" food before, she knows what she likes and doesn't like. God gave her those little tastebuds to discern her pleasing vs. unpleasing flavors. I am amazed at how her little body works and discovers things at her young age. Wish I could say I'm off to the kitchen to whip up some more yummy baby food but I'm pooped...I'm going to bed.

More updates to come...

~Mandy