Life With The Adamis Family: Great news!

Hi everyone,

Wow, not too shabby! It's only been a month since my last update on here. I'm getting better! haha

This summer has been busy, crazy, but filled of lots of fun times! Some of the highlights are:

-Except for my Dad who was attending his brother's funeral in northern CA, our immediate Cortez and Adamis families including Robert's Grandma Marion were able to join us at 2nd annual CRC family picnic at the nearby park! All the cousins were so happy to be able to interact with Mia and Mia LOVED being outside with the family! She didn't have a single issue the whole time. We were at the park for a good 4 hours and we didn't need to suction her once! She was so happy and content just receiving so much love and attention from her family!

- Mercedes started soccer! She hasn't had an official game yet, but the past two Saturdays have been skills testing to make sure the teams are even... but at this age, it's just gonna be fun watching all the kids run after the ball! =) She's so excited! She's never done anything like this because we've always been so busy with Mia, but Mercedes is 5 now and needs this activity to be her own, plus she needs exercise. This crazy child can stay up forever reading, singing, talking, etc ... She doesn't get enough physical activity so we're all so happy about putting her in a team sport! She sleeps super well on Saturday nights - AND she even takes a nap! We're still trying to work on her understanding that soccer is a team sport - she has to share the ball, as do the other children. The first week didn't go so well. There were lots of tears coming from my Mercedes. =) This past Saturday, though, she didn't cry! =) I think she's understanding!

-We had our yard sale as planned last Saturday morning and I was so blessed to see how generous people were! As I mentioned before, Robert and I had decided that all proceeds from the sale would go toward the purchase of an iPad for Mia's communication developement. I made up a sign (photo below) and a few people didn't buy anything at the sale, but made generous donations! I didn't expect people to do that! Even a friend made a donation via PayPal which totally touched me! God blessed our sale and we sold a large percentage of what I had out with not much bargaining. Between the sales, donations and the little bit of money Mia receives every month from the State, we had enough money to purchase the iPad 2! Another friend was so thoughtful and offered their online discount, so they ordered it for us yesterday and we should receive it next week! I am so excited that we will be able to work more with Mia and hopefully we'll be able to understand her wants and needs better!

-More incredible news is that Mia is doing GREAT!!! She had a pretty rough time 2 weeks ago. They stopped doing the straigh caths (to empty her bladder to reduce the chances of future UTIs), so I knew she'd be getting a UTI. It would only be a matter of time. Sure enough, about a week later, I could smell it on her breath that she was getting sick. Two days later, she wasn't doing well, so I asked if they could please get a urine sample because I was positive it was a UTI. Yep. Another UTI. She was maxed out on her ventilator settings and was requiring a lot of oxygen, etc. After a day or two, once antibiotics were on board, they were able to lower a few vent settings because she was getting more stable. She had been doing pretty well for the week, but she's always had a pretty big air leak from around the trach (you can hear the air escaping from the stoma - the hole in her neck where the trach is placed.) On Tuesday morning, I went to visit Mia and her RT told me that they changed Mia's trach size to the next half size up, a 4.5 cuffed trach, and that it's controling the air leak a lot better. Right away I noticed her oxygen saturation was better, you couldn't hear the air escaping as much, her volumes (how deep her breaths are) were better, her co2 was better.... it was a great change! She had been using a size 4.0 cuffed trach since July 23, 2009 - easy to remember, since it's Robert's birthday. =)

So, because of how great she was doing with the new trach size, Mia has been able to be weaned down SO much this week alone!! Normally, because she's so sensitive to any little vent change, they can only change one setting once every 1 to 2 weeks, and only by 1. Tuesday, they changed the trach size. Wednesday, they lowered her pressure control from 22 to 20 (normally, they'd only change by 1, so 22 to 21.) She did great, so a few hours later, they lowered the pressure control again from 20 to 18! Her co2 was still perfect! Thursday, they lowered her pressure support from 18 to 16 and she took that vent change so beautifully that a few hours later, they lowered her breath rate from 22 to 20! Co2 still perfect. Honestly, in those 3 days, that's equivilant to about 2-3 months worth of weaning for Mia! We are so happy. =) She is, too! Mia is so much more active and alert. It's so exciting to see!

I'm not the biggest fan of this blog editor so it's too frustrating to try to get the pictures where I want them, so I'm just leavning them where they are. =) Enjoy the pictures below!

God bless you all and keep praying for our family and especially for Mia!! We want her home so badly ... I pray that becomes a reality SOON!!

Blessed,

Rachael <3