Its been forever!

Hi Everybody,

Why does it seem like I start every post like this? I can't believe it's been 3 months since my last update on here!

We've been doing well - Mia has had her ups and downs, but thankfully she's been able to see some specialty doctors to see why she's been so up and down. =) Last week she was able to see a urologist at LPCH (Children's hospital at Stanford) and she had the urodynamics study done. It was quite invasive, but hopefully it will provide answers to why she's been getting UTIs regularly.

It was interesting how they did the study - one catheter went up in her bladder (which they would fill with fluid), and another catheter in her tushie, sensors attached to her and to a monitor, so whenever she had a muscle contraction, it would show on the monitor. As they were filling her bladder, the doctor was taking xrays seeing the shape of the bladder, how full it was getting, when she'd have a contraction how much she'd empty it, etc. The study took a little over an hour long and she was very glad when it was finally over.

The one concern that I had that the doc answered was that it's not a muscle issue - she's perfectly strong enough to empty her bladder, but he thinks it's more of an neuro problem - she can't time the contractions and empty it at the same time. One time she emptied her bladder 80%, another time only 20%. He said he was going to call Dr. Silva (Mia's doctor here at CRC) and discuss his findings with him. He told me there basically are only 2 options at the moment to keep Mia from getting UTIs. Either keep cathing her twice a day to make sure her bladder is empty, or to paralyze her bladder and only cath her. Paralyzing clearing is NOT the way we are going to go, so we'll see what their plan of attack is going to be. Still haven't heard anything from Dr. Silva.

This past Monday, the eye doctor came and saw Mia. He hadn't seen her since she was 9 months old. At that time, she had perfect vision. Her vision has decreased since then - now she's near-sighted. 20/150. He's not concerned about it, though, since everything she play plays with and her little movie player is in the perfect spot and she doesn't require glasses right now. He says definitely when she's older, she'll need glasses and probably even corrective eye surgery to straighten out her eyes, but again, not anytime soon. He's thinking years down the road. All in all, he was still happy with her progress. =)

Mia remains active and very playful! She's definitely loving when her teachers bring the iPad for her to play on! She's not afraid to touch it at all anymore - she's still not too sure about touching other things, though. It's interesting - she totally knows she's in control of what she does with the iPad! We've been planning on having a yard sale for several months now and we've been slowly going through things that we don't need, etc, and I finally decided that all the proceeds will go towards the purchase of an iPad for Mia! Hopefully we will be able to have the yard sale at my parents' home on August 27th.

Mercedes is definitely doing well! (Well, although at the moment she has the sniffles.) I can't believe how much that girl is reading!!! It amazes me! She is soo excited about starting Kindergarten in September. Everyone asks her if she's starting Kindergarten this fall, but she quickly corrects them that no, she's starting in September! haha She is such a joy and keeps me laughing! She just had her 5th birthday on July 1st and partied the way she wanted! On her actual birthday, she and some cousins went to Chuck E. Cheese's and the next day she had a big SF Giants baseball party with friends and family at the park by home! That was so fun!! After that, we went home, had a BBQ and went swimming! She definitely had a great birthday! =)

I am very much wanting Mia home - I don't care if she's still on the vent, but I am so looking forward to that day and I pray it's a lot sooner than we think!! Keep praying for our family, especially Mia's healing. She is always making progress, even if it's the tiniest thing for a "normal" child, for her it's HUGE! I am so proud of her!!

Blessed,
Rachael <3