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,