Saturday, May 29, 2010

Latest Doctor's Appointment

Doctors, doctors and more doctors. I guess I really shouldn't complain. Emma is doing great and her follow ups with all her specialists are getting further apart. Still though. I feel whiney. I am allowed to whine, right? Some days I can whine and make it all about me, can't I? Does it mean I am being selfish? Yes. However it helps. It's healing to sit on the pity pot from time to time. I have learned this over the years of trying to heal since Emma's injury.

Alright, so we had Emma's follow up with her neurosurgeon on Friday. It was a good appointment. Ok. Well, Emma wasn't behaving in her typical fashion but she is like that at every doctor's appointment (kid with a brain injury who has been traumatized, it's understandable why she is so high strung). She loves Dr. Shafron, gives him hugs as long as she doesn't see the doctor in the OFFICE. It's quite funny. Understandable but funny. Good news is that her shunt looks good, she has plenty of extra tubing so no need to operate on that part anytime soon. So yay! He doesn't know if she really needs it anymore at this point but it's definitely NOT worth the risk to put her under to remove it to either a) find she still has the hydrocephalus b) risk infection and c.) it ain't broke, don't fix it. It's not infected, it has never malfunctioned (knock on wood), so let's leave it be. It's always a relief when her appointments go off with out a hitch. Yay! He is pleased with how her head looks after her cranioplasty last year! Yay! Emma has a whole head! Hooray! When the doc says everything looks great, he can't be any happier and is impressed with all the progress she is making, I can exhale. Which has me thinking, I am always impressed with how great she is doing. I can only imagine how the doctors react when they see her! I mean, my goodness, when Dr Zimmerman (the ER doc who is now a Forensic pediatrician) saw Emma she was unresponsive and without a good prognosis, she was stabilized and sent to the neurosurgeon, Dr. Shafron, who saw a gravely injured baby, performed emergency brain surgery, saved her life and has had the opportunity to see her grow and accomplish things many of us never expected because of the work each and every doctor she had at Phoenix Children's. From the decisions made in the ER to the choices made in neurosurgery to each and every move made in the PICU to the therapies and the medicine in neuro rehabilitation, every move gave me the child I have today. Albeit a very boisterous, intuitive, high energy, and frustrating child, but she's mine. My daughter. My baby. My heart and soul and she is a great girl.

Wow. That was a tangent. I get like this. Especially this time of the year. Whenever she sees her doctors, I get grounded on the fact that Emma has a brain injury. It's not like I don't know it any other day but I grounded to the fact. I am also looking at the calendar and in one month and 10 days it will be six years since the day Emma's life was taken from her, to the day that she died and was reborn, to the day she was permanently shattered, to the day my heart was broken forever, the day I was torn to pieces as I was helpless to protect my child, the day I learned child abuse doesn't just happen to the people you read about, we became THOSE people, and we have healed.

Also, April 3, my daughter Angelique would have been 9 years old. I think about her and how tiny she was. 14.6 ounces and 13 inches long. Tiny, beautiful and fully formed and born at 23 weeks. She had cysts on her brain and cysts in her kidneys. I had her autopsied and she was found to have diffused renal multicystic dysplasia. We thought Polycystic Kidney disease, like my first born, but polycystic kidneys have a 1 in 4 recurrence rate because it's a recessive gene and the cysts are uniform, meaning the same size, but multicystic dysplasia is much more rare and the cysts are not the same size. My first born was born September 18, 2000, sweet Alanna, and she was born at 32 weeks from polycystic kidney disease and due to the size of her kidneys her lungs and heart were to small and she died from a respiratory arrest. She was 4 lbs 6 ounces and 17 inches long. She had a potter's face, meaning her nose was smashed and her ears were low set and floppy. She didn't have a chance of survival and it was already arranged for when she was born to have no resusitation attempts. Then came my sweet beautiful Emma. She was 8 lbs 6 ounces (I just noticed my girls seem to have a 6 at the end of their weights!) and 19 inches long. Just a beautiful, beautiful baby. And a good one. So quiet and so wonderful. Sigh. I miss the baby smells, the baby snores, and the pathetic but sweet baby whimpers. Now that she's six she likes to yell at me and give me tons of 'tude.

She still lets me kiss her. I hope that lasts a little longer than other kids. She is so sweet. I feel naive when I say, I hope her sweetness and loving nature never goes away.

Wow. Went off on another wordy tangent, huh? I would post photos of myself and my first two girls but I don't want to shock anybody because they are deceased in the photos. :(

Oh yeah! Dr. Shafron is having a meeting with the medical director of AP/IPA insurance. They are denying kids for botox. They want the kids to try other, and costly, medications before approving botox. The problem with the other meds is they are systemic which isn't good for kids who are a hemi (like Emma, one side is affected) and have behavioral problems (once again, Emma). So, we hope that at this meeting AP/IPA can listen to the facts and allow our children the botox. Emma needs it badly in her left arm, well primarily her wrist. It's getting very atrophied and she is so sensitive to touch that we aren't able to get much accomplished. Obviously I can touch her left arm but that doesn't help at school or in therapies. I have a lot of faith that the medical director will listen to fact and reason. It would cost much more to put a child like Emma on baclofen. Th ecost of the meds, more doctors appointments, more costly to the school district, more therapies, etc to help offset the problems it will cause. Doesn't make sense to increase problems, does it?


Kids Learn @ Kiboom Daily said...

I am so happy that your doctor's appointment went well!

I feel almost guilty sending you this, but...I've been very busy with my social networking lately!

Which brings me to the reason for this post:

I am really very sorry that this is a form letter :(

However we spent days following everyone on the Simply Follow list from the Mom Bloggers Club, and out of 690 people, maybe only 10 followed us :(

I don’t know if you joined our blog or not, but if you have a moment, could you PLEASE go over to and give us a quick follow?

Again, sorry for this form letter, but I am going to to back to ALL 690+ people that we followed and leaving this note. Hopefully we will get a super great turnout now!



Nya's mom said...

I am stopping by to say that I love your blog and am now following!

I am still new at this blogging thing and am need of new followers, so please follow me as well. You can find me at:

-Jessica a.k.a Nya's mom

Kailbe Mason Reed said...

I came across your blog while checking out things on shaken baby syndrome My name is Renee Reed, If you happen to be a part of face book please look me up Renee Cyr Reed. My son has a blog on here to...I have questions, your amazing by the way and your daughter is beautiful. I live in Surprise, and I know St. Joes inside and out Kaileb's nero surgeon, neurologist, and well the every other Dr. he has there as well. Your daughter is a inspiration to me.