Sunday, May 12, 2013

Happy Mother's Day!

I am so blessed with my beautiful girls and particularly thankful for our sweet little baby this year. God is so good to give us another healthy and JOYFUL little baby. I truly treasure every laugh, smile, late night feeding, and, yes, even every diaper change. I don't know if I have more perspective because of what I went through with Maggie or I'm not as stressed the third time around, but I am enjoying every single minute with my baby.

Neely turned 5 months yesterday. How I wish time would just stop so I can treasure these moments even more!

Wednesday, May 8, 2013

Good day

Maggie was an absolute angel yesterday. We were at the hospital most of the day and she never complained. Not once.

We met with her neurosurgeon after the MRI and the good news is that her lower spinal cord (where she had surgery several years ago) looks fine. No more surgery needed!

One of the reasons she had the MRI is because lately we have noticed Maggie falling more and her right leg has gotten super tight. Her gait is not like other three year olds and, most concerning, she is still not potty trained. All these things are controlled by the lower part of the spinal cord- where she had surgery a few years ago.

I've been bribing her and guilting her over the last year to use the potty and, in the back of my mind, I had the fear knowing there was a real possibility she couldn't control herself and, therefore, couldn't be potty trained. Thankfully, the MRI cleared those fears. So we'll keep trying...

As for her gait and leg stiffness, he thinks she will always have that. He says the reason she is falling a lot is because she is trying more things, getting more confident, and the probability of her falling increases with that.

Frankly, it's hard to hear that your daughter will always struggle with walking and running and movement in general, but I kind of figured that was going to be the case. Her leg brace and shoes and, of course, therapy will help her compensate as she gets older. But as grateful as I am for everything else we've been blessed with, it does hurt my heart to hear that. Whenever I see her around her peers it pains me even worse, because the older they get, the more that physical gap widens. I see it at playdates and at the park all the time- Maggie will often sit on the outskirts and watch because she can't keep up with other rambunctious three year olds. I'm sure she also fears being knocked over (which happens often). No parent ever wants their child to struggle or be left out because of physical issues, even the ones who know they should just be thankful their child is walking at all. It still hurts.

In other news, he told us he thinks she needs to wear her halo brace more than we are doing now. So now we have four different doctor's opinions on how much she should be wearing it and they are all different! Very frustrating, but like so many things I will just have to go with my gut because, as this renowned neurosurgeon said today, Maggie is a mystery and has never fit into a box when it comes to diagnosing her. He said he can't give us any more direction on her neck because he just doesn't know....

But to end on a positive note, he said he was blown away by how well she was doing overall. He laughed as Maggie talked and played with the huge stuffed dinosaur he keeps in his office. He said he never expected Maggie to do so well...not in a million years. Thank you, Lord.

Tuesday, May 7, 2013

MRI tomorrow

Maggie has an MRI tomorrow. It is to check for any changes in her spinal cord since she had her surgery when she was 13 months old. Please pray that we would get good results back that show no changes and that everything is fine her. We have seen some signs lately that there may be some issues so I am trying to be hopeful...

Tomorrow will be an all day affair, with her MRI under anesthesia in the morning and then waiting to meet with the neurosurgeon in the afternoon for results. I am dreading it all. Waiting in pre-op forever, doing all the paperwork for the gazillionth time, forcing Maggie to let the nurses take her vitals, repeating her medical history to at least four different people, and then explaining to my sweet little girl, over and over again, why she has to roll into a strange and scary room without is all too familiar. Now that she knows what to expect, it makes it even harder....

On another note though..

Maggie got her first official haircut today. I've never taken her anywhere because her tilted head makes it hard for someone to cut, so I always just trimmed it myself. But I don't cut it often enough and, as a result, it got so long that whenever it got wet it stretched all the way to her rear end! So we finally went today to Cool Cuts and got the "first hair cut" picture frame and bow at three and a half years old!

 Jessica held her head straight ...

She was very serious about the whole process...
But looks so beautiful now..those curls don't quit!

Friday, May 3, 2013

Coach versus Cheerleader

I feel like I am Maggie's coach and it's Spring training everyday of the year for her. With the amount of therapy "exercises" she requires on a daily basis to progress it's hard not get into the mode of constantly pushing and challenging her to do more and to do better.

I realize, however, that some days I just need to be the mother in the stands cheering her on. On rare days like this past Saturday at Maggie's dance recital I was able to put my coaching duties aside and be that kind of mom. I have never seen Maggie so happy and so proud- she had so much fun!

As for the parents who were told that their little baby may not ever walk or live a normal life, well, Justin and I had to hold it together through her routine and not let our tears get the best of us. We were so proud of the hardest-working three year old we know...and knowing that she can keep up with her peers (for the most part) is such a sweet gift.

Video from her rehearsal...Jumping up and down for most three year olds is easy, but this is quite hard for Maggie with her weakness and balance issues. She and her therapist have been working hard and you can tell.