Thursday, July 1, 2010

Hamster Wheel

Husband? Who is that? Sleep? What is that? Sit.....NEVER. Yes, like everyone, life is crazy and busier than ever. I feel like a hamster in her wheel except I can't figure out how to make it stop spinning so that I can get off! This is my life, as I am sure many of you can relate.
Even the girls get pooped from all the spinning (the messy house is a constant side effect)!

I will start the spinning wheel with Mia's Dr. appointments. We met with her wonderful cardiologist. It began with just a weight check that put Mia over the edge as well as her sister, who tagged along to supervise Mia's visit! They tried to do an EKG but unfortunately were unable to because Mia was hysterical crying (and so was sissy). The Dr. was able to listen to her heart with his stethoscope and get her to smile maybe once or twice. Because Mia shows no signs of cardio stress in her daily life and her heart sounds good, tests are not imminent. She should have an ultrasound and an EKG but will have to be sedated. If she needs to be sedated at some point for another reason, we will schedule those tests. Otherwise, we will just continue to monitor her.

Next, we met with Mia's pediatrician. Mia is below the 2% in both weight and height and is falling off her curve a little bit. We scheduled an ultrasound and an appointment with an endocrinologist to take a closer look and make sure we weren't missing anything. The ultrasound was not that encouraging. After much searching, they were not able to find her uterus or ovaries. We were told that this does not mean she is definitely missing both. A baby's ovaries are very small and can be difficult to see but the uterus is larger and usually visible. However, it still could have been missed if something was blocking it. The hormones produced by the ovaries will not effect her growth until she reaches puberty so, although it would be nice to know definitely, we have time to do a repeat ultrasound when she is older. For the present time, we need to continue monitoring her growth and do some more testing. Because she has always been on the small side and has not fallen to extreme levels, the Dr. is going to wait to get more blood work. He doesn't want to put her through more testing if he doesn't have to. She could just be delayed and will catch up on her own or she may just be genetically small like her parents. If she drops further, we will know that something more serious is going on. We are going to go for a bone x-ray in a couple months. This will also help answer some questions. For now, we are increasing her calories and watching her grow (hopefully fatter and taller)!

We had a follow up with Mia's neurosurgeon in Syracuse. This Dr. has it all, skill and bedside manner! She gives us a big hug every time we see her! What surgeon does that? She is shorter than me and wears a smile from ear to ear every time we see her!! She always asks me to e-mail pictures and updates. She gives us her cell phone number in case we needed anything. Of all the doctors we deal with, she is unique. Of course, we love her! It helps that Mia's shunt has had no problems since Dr. Tovar-Spinoza placed it in. Mia continues to do well and the shunt looks great!!!!!! Yes, this makes us extremely happy and relieved.

Finally, the eye doctor. We have been patching Mia's eye left eye for 8 weeks. Her right eye turns in and appears weak. After patching for eight weeks, the eye continued to turn in more. We are going to patch for another eight weeks. We patch her eye two hours a day. Hopefully we will see some improvement this time....if she keeps the patch on. By the end of the 6th week, she had figured out that whenever I walked and/or looked away, she could whip her patch off. Even sitting with her for the full two hours, she pulls the patch off constantly. So, we battle and sometimes...she wins!!
That pretty much sums up her doctor's appointments. I know it is a lot of information at once. I should have posted after each appointment but I just can't seem to do that. In fact, I started this post over a week ago. I am ALWAYS interrupted or falling asleep and have to come back to it.

Mia's therapies are going very well. She is now using a stander, in addition to her walker, in order to increase her weight bearing. She uses the stander for about an hour a day and we are trying to increase that. Although, I have to be honest, I am having a hard time fitting everything in: 2 hours of patching, an hour of standing, time in the walker, therapies, baths and trying to get outside in the pool with the other kids. All of this between tennis, soccer, swimming, library and play dates for the older kids. Anyway, these are the busy days of summer! Mia's speech is growing by leaps and bounds. She tries to copy everything sissy says. She even repeated her first string of three words, "I don't know", which sounds like all one word! But we know exactly what she is saying. And if you can believe this, she is beginning to count with me!!!

Every day I am amazed by her progress and tolerance of all she endures. She smiles constantly and often chants, "happy, happy, happy"! It is simply contagious. My heart glows when I see how happy she is and how she is learning to adapt. She does not crawl, stand or walk but she gets where she want to go. She will scoot, roll and crawl with her head. As she works the floor in the library or the grass outside, I get many looks! Adults are wondering but afraid to ask and kids are curious and shy. What they don't realize is that, like a typical toddler, she does not want to be strapped in a stroller. So although it disturbs others to watch, I feel she should be able to explore the only way she knows how. Does it gross me out at times when her head is buried in the filthy carpet? Of course!!! In fact, most times that's all I can think about. But I don't feel the answer is to keep her contained either. If Mia needs to adapt, so do I. I just wish I could do it with the same innocence and grace as she does. All I can do is pray that the world not be cruel to her as she grows, but I know it will be. So then I pray that she has the strength and confidence to forge ahead and be the beautiful little girl she is! May she realize that she can fly without wings.
I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit.-Dawna Markova