It's Been Awhile...

Hi Guys! I'm still here!!!!

Oh my this has been a weird month... bear with me while I break it down.

So, October 1st we started the month off with our very first ear infection. Shawn and I thought that Audrey was fussy because of her braces. I took her to Dr. Porter that day and he confirmed it... an ear infection in her left ear. He put her on antibiotics and all was good. She was supposed to have her ECI evaluation that day as well but we rescheduled for the following week.

Mommy and Daddy make me happy!

Week 10/05 - 10/11 came and she had an appointment with Dr. Chudnow, her neurologist and her evaluation. Our appointment with Dr. Chudnow didn't go as we would have liked. He compared her MRI's from birth and a few weeks ago and said that her Hydrocephalus has increased in some areas. He referred us to a Pediatric Neurosurgeon, Dr. Price so she can discuss options to manage the Hydrocephalus. From searching the internet, I came up with only one possible solution - a shunt (more on that below). I've also realized that I cannot talk to Dr. Chudnow, I'm not sure if he thinks I'm a neurologist too or what, but he doesn't give me FULL explanations and as any new mother in my situation I need to know EVERYTHING! I'm currently searching for a new doctor!!

Daddy is helping me learn new things - leg kicks, grabbing toys, grabbing facial hair, and talking.

Her evaluation for ECI went well. She was accepted into their program which was fantastic news. The bad news is that she is 3 months delayed in her cognitive and physical development and at the time, 10/08/2008, was at a 2 month level. However, they said her social skills were at about a 3 month level. We set some realistic goals and hopefully she will have them met in 6 months when they re-evaluate her. By that time, she will be sitting up, reaching for people to pick her up, move from people to people, reaching for toys and manipulating them. The ECI specialist visits her once a week for an hour and a physical therapist works with her once a month. So far she has had 3 sessions with the specialist and one with the PT and we have seen MAJOR improvements. She reaches for her toys and purposefully hits at her toy attached to her car seat. She has also learned that if she touches her play gym toy it will sing to her. It's the little things that excite us so much... I would say that she is well past a 2 month level now and it's only been 3 weeks. Even though, I'm not an expert on child development, I'm an expert on Audrey!

Hello?

What are you talking about?

10/11 marked the 6th year that we lost our Brother, Uncle and Son. It is still a tremendously difficult day for us but there's something about new life that makes it easier to bear. We all spent the day together laughing and crying. It doesn't seem like 6 years has passed. I truly feel that Kevin is Audrey's guardian angel and will be with her at every appointment, medical procedure and surgery encouraging her to stay strong and showing her God's love! We certainly feel it from the outside.

I'm such a big girl!

Week 10/12 - 10/18: We had a Disability Awareness Fair at Bank of America and I attended with the hopes of getting as many resources for Audrey as possible. It was a success! I've got some information on the Epilepsy Foundation, Scottish Rite, and a couple of other resources that I can't remember... bad mommy.

Mommy and Daddy's sweet baby...

We also had her appointment with the Neurosurgeon, Dr. Price. She looked over her MRI's and has put off making a decision to implant a shunt until December 15th. She said she does see some increase and that she is leaning towards the shunt but wants to see what the CT Scan shows in December. She took some measurements of Audrey's and my head and charted them. Audrey is in the >95%, but she is following the curve and there has not been a significant increase (which is another reason why she wants to wait). Her head circumference had not changed since the last time Audrey saw Dr. Chudnow (only a week, yes...). Interestingly, my head circumference is at the same location on the curve as Audrey's for someone older than 18. She asked that I get Shawn's head size and give it to her in December (it's about the same as mine...). She kind of hinted that Audrey may just have a big head because her parents have big heads :). She also explained what Hydrocephalus was because I had no idea and she explained the functions of the shunt and where it's placed.
Hydrocephalus is an abnormal accumulation of CSF (cerebrospinal fluid) in the ventricles of the brain. In Audrey's case, her brain is not absorbing as much fluid as her body is producing which is causing the excess. What the shunt will do is transfer the excess fluid from her brain to her intestines where it can be absorbed back into her body. The shunt will be surgically implanted where the fluid is and she will have a bubble-like bump on the outside of her skull where the reservoir will be. There will be a tube that will travel from the reservoir at the top of her head, behind her ear and down to her intestines. From what I gather off the internet, she will have two incisions, her head and stomach.

Symptoms of Hydrocephalus in infants are:
A very large head or a head that's growing very quickly in relation to the rest of the body
Vomiting (Projectile - which could explain a TON!!!!)
Sleepiness (Our little one sleeps a lot it seems)
Irritability
Downward deviation of the eyes, called "sunsetting" (She does have this on occasion, but she's able to look up if something catches her eye or if she's locating a sound)
Seizures (Check - we have that.)
Delayed Development (that's on our list too...)

Dr. Price could not say whether or not a shunt placement would alleviate the seizures or developmental delays. She told us that the shunt will be in her for life whether she needed it or not in the future. At one time, they did remove shunts but in some cases it resulted in the patient dying and now they just leave them in once they're implanted. There is definitely a possibility that once it's implanted, she will need to go through several shunt revisions if the shunt malfunctions or if she gets an infection. The symptoms that warrants a malfunction or infection are the listed symptoms I just mentioned. I will go into greater detail with everyone who watches over her of what to do if we see signs of a malfunction/infection. So, guess who will appear to be neurotic and over-protective to everyone who doesn't know Audrey's history? Yep, ME!! And, I'm not ashamed!

I'm just hanging out with my folks...

On, Saturday, October 18th, Audrey spent the night with her Nanny and Paw-Paw and went to church with them the following morning. Her Nanny and Paw-Paw love watching her overnight and will even more so now because Audrey is SLEEPING THROUGH THE NIGHT - for real this time!!! Nanny and Paw-Paw are Mommy and Daddy's heroes now because they gave us a chance to have a date and to sleep in! It was amazing! Nanny said Audrey did pretty good at church but she had to take her into the cry room because Audrey was getting fussy. They will be moving soon too and their temporary home sweet home with Maw-Maw is closer to us so they will probably all get to see Audrey a little more!!!

I love watching my Mommy scrub my legs and feet!

Week 10/19 - 10/25: We spent Monday night with Nana and Papa to celebrate the day Audrey's Uncle Kevin was born. He was a wonderful man and we all know that he is a wonderful Uncle, Brother and Son even from Heaven. Every time Audrey smiles at what appears to be the nothing, I know her Uncle Kevin is hovering over her making goofy faces and giving her angel kisses! We had a wonderful dinner and sat around the dining room table talking for quite a while. We love Papa and Nana's cooking!

On Wednesday, 10/22, Audrey had to have her 2nd Hepatitis B shot because her daycare sent me a mean, little email saying her vaccination record wasn't updated. It was quick and not painless... She was completely shocked when the nurse gave her the shot. She jumped, made this little face like "WTH?" and screamed for several minutes... and, guess what Mommy forgot? A pacifier. It was fun!!!

Week 10/26 - 11-01: We had a follow-up appointment with Dr. Sackett. We waited over an hour to see him for 5 minutes and Mommy did it again - she forgot Audrey's pacifier. You'd think she'd learn from all my doctor visits. He looked over her shoes (did not take her feet out or anything), said they looked good and to come back in 3 months. He wants her to continue to stay in the braces for 23 hours for the next 3 months. In 3 months, we'll discuss wearing them only at night. He wants us to go to the orthotics clinic every 6 weeks to have them raise the angle of her left shoe until her foot is straight.

10/28 - we went to see Dr. Porter because Mommy and Daddy thought Audrey was getting another ear infection... turns out her ears are clear. He thought it looked like she was at the beginning of a little head cold and if it gets worse to bring her back in to check her ears again!

So, now onto some better news... Audrey is at the beginning stages of cutting her first tooth!!! She has been fussy and drooling a lot! She wants to be held all the time and will either be comforted with her pacifier or by me rocking her. She has started to bring more toys to her mouth so she's exploring and learning new textures, that's a good thing!!! Hopefully, her tooth will not come in slowly and pop through in the next few days. Am I naive?

We have also introduced her to cereal through her bottle and by spoon...

First time to eat from a spoon and I did pretty well!

Keeping it inside my mouth is the hardest part...

Halloween, she's spending the night with her Nanny and Paw-Paw again while Mommy and Daddy co-host our 1st Annual Kegoween Party at the Walker's! It should be loads of fun and I will post all the wonderful photos later.