New Legs

Check out the brand new legs (otherwise known as "orthotics", "AFO's" or"leg braces". They may or may not help her walk any sooner, but they provide her with the support she needs to stand which is what she should be doing developmentally. You can see the pride and excitement in her eyes when she stands with them on!
She LOVES standing! :)

Lots of Progress

Wow! Chloe has had a BUSY week with LOTS of good progress made! Monday she showed her OT how she has started to move forward on her belly in a commando type crawl. Soooo exciting. Then she showed her Speech and feeding therapist how far she's come in feeding. :) That afternoon at her 1 year old appt the doc told us she has grown a good bit in length! Wooo hooo. Tuesday she got her new AFO (AKA "orthotics" or leg braces). The are plastic and support her feet and the back of her lower leg. They go up to just below her knees. I'll post a picture soon. Wednesday she enjoyed some fresh air at the beach. When we got home she took a WHOLE ounce and 1/2 from a bottle! That's more thin liquids then she's EVER HAD in her whole life!!!! Thursday during PT she pulled herself to stand for the first time ALL BY HERSELF with her braces on!!! She is standing beautifully with them on. (pictures of that to come too). Just warms my heart! After that we joined my mom for lunch and sweet Chloe ate her first ALL SOLIDS meal - I mean NO purees!!!! She had carrots from my soup, banana, and kiwi. She did GREAT! And another ounce and 1/2 from the bottle when we got home. Then Friday she was back to impressing her other PT (physical therapist) with her commando crawling skills and her new standing skills! It's been a busy, exciting week.

On another note, Xander started school and loves his new teacher. He's very happy to be back and starting the 3rd grade. Sadie is still home for another 1/2 week returing to the same school, but new classroom next Thursday. Then the following Tuesday we start our program. To say we're busy is a little understating things. But at least it's all good stuff.

Chloe's First Birthday Bash Extravaganza!

Her pretty but GINORMOUS birthday cake!

The beautiful birthday girl. Happy Birthday angel.

The birthday girl with her friends! :)

Chloe's good friend Chelsea came to celebrate with her!

Chloe's really thinking "get this stupid thing off my head".

Happy First Birthday Baby! (Chloe with her dairy free, chocolate frosted cupcake that was in fact quite delicious!)

Chloe's not too happy after making a huge mess with her cupcake and getting it all over her face. She didn't get the idea of eating it. She just made a big mess.

Penny and Mo doing some art together. They really got "into" their project - literally - they decorated themselves! :)

The Ridge Hill gang.

Playing with her new Pound-a-Ball that she LOVES! She was demonstrating her new "bang bang" skill. Mommy and daddy were soooo pleased. Thanks Mo, Scott, Penny and Nathaniel. What a perfect gift!

Ha ha, I love that title. Just makes it sound so important! It WAS important. We had a great time and I wanted to post some pics. Hope you enjoyed them. We had about 30 adults and 30 kids! My husband kept saying "30 KIDS?!?!" The weather held out for us and we all had a great time. Especially the birthday girl! :)

A Nice Surprise!

I left the room with Chloe moving around on her belly and returned a bit later to find her SITTING UP! It's the first time she went from her belly to sitting up all by herself!!!! I was soooo excited. I don't know HOW THE HECK she did it, but she did. I can't wait to tell her therapists. I was totally surprised!

Tomorrow's Chloe's big birthday bash. Don't ask me why I decided to take on the stress of a large party. And to make matters worse the weather is very questionable. Argh. Let's hope for a nice day so we can honor our special girl and all the people who have supported her over this past year. I can't believe she's one. She's still like such a baby. Birthdays with a medically complicated child who also has special needs are paradoxical. There's the feelings of elation and celebration regarding her success and, well, her LIFE. At the same time, there are feelings of loss (loss of her infancy) and frustration at how hard she has to work to do things younger babies are doing. . . there's also some period of re-living this year, which at times has been heartbreaking. But fortunately the feelings of joy and celebration dominate and I'm left with great pride in how far this amazing angel has come.

If you happen to be local and want to join us for a very casual BBQ in her honor please contact me through email for more information. :)

Update

Well, we're thoroughly enjoying our new pup Miles! He's such a delight! He comes from a family with children so he is very comfortable with our kids. We're still watching him like a hawk of course, until we get to know him, but all in all, things are going quite well.

Chloe's doing great. Enjoying being one. :) She likes watching Miles and getting kisses. She has started eating fresh banana and peaches in little chunks. I'm so excited! So she's still eating purees and now mushy food chunks. She's so cute when she's chewing it up. She gets this look on her face - a mix of bewilderment, concentration and pride. It's very cute and very funny.

An update on Zoey - thanks for the thoughts and prayers for our sweet friend who's test came back negative. :) We're still sending thoughts and prayers for her as she finds out what is going on and to sweet Jax who is always fighting a new battle of some sort. They are amazing kids!

Our Newest Addition!

Welcome Home Miles!!!!

We're still settling in and getting to know each other, but he is one sweet boy! We can't thank everyone at The Chi Society and Rescue Road Trips enough for making his adoption possible! What amazing people! Peggy, Lee, Lorry and Greg are all amazing people. If anyone in the Northeast is looking to adopt I hope you will give these guys a chance. Lee and Lorry were so patient with me and never made me feel like the pain in the a** I KNOW I was! I wanted so much information and pictures and even a video (which they figured out how to do and after several attempts and lots of patience posted on you tube). Click on the highlighted group names to link to their pages and "you tube" above to see his video.

Wish us luck! :)

Fun with a New Friend

Teighan and Chloe posing for the camera!

Hello there baby.

Checking each other out!

Nursing Care

Long story SHORT, the stupid nursing care was too good to be true! We were only approved for the 4 remaining days we had left! Oh well. :(

Happy Birthday!!!

Happy Birthday sweet angel. Chloe turned one today. Hard to believe it's been 1 year. 1 CRAZY year. 1 amazing year. 1 year we'll never forget.

Xander is presently throwing himself over the couch and Chloe is laughing at him. Quite a sight (and sounds!) Nothing like siblings!

Nursing Care and OSA

So I've finally managed to pick my chin up off the floor after receiving an email from Chloe's pulmonologist that simply stated "Nursing care has been approved". I had to read it 3x to make sure I wasn't reading it wrong. And the next sentence stated the name of the agency so I KNEW it wasn't a typo. What the *#&(@#! WHAT has changed? She's been on the CPAP (cpap = continuous positive air pressure) since we were denied nursing care last time! NOTHING has changed. So I don't know what their thought process is, and at this moment I don't care. If we're actually going to get overnight nursing care even though our nursing care benefit is maxed then I'm just going to be happy with that. I mean, of course we should have had it all along, but we've done okay until recently. She's gotten REALLY hard to get on the CPAP and you really need to be up all night to keep it on her. Which obviously we can't do and still function during the day. Our doctor reviewed with me today the seriousness of OSA (obstructive sleep apnea) and the risk it puts on her heart and lungs and how it can lead to pulmonary hypertension, in addition to just making her overtired and cranky. It will also eventually start to effect her development. She's had so many struggles already we don't need her to have any more. So I'm feeling so thankful tonight that we're finally going to get some help. We just can't do this on our own and her heart, lungs and development depend on it! (How's that for a little pressure?)

I also need some thoughts and prayers to go out to Jax and Zoey, both needing some extra mojo headed their way. They are very special friends to me. I hope their mommies know how much they've helped and supported and inspired me through this journey. Please check out their blogs (by clicking on their names). . . be careful, you'll fall in love! I know I have!

A New Addition

Well, we're adding to our family! Please meet Miles (currently know as "Spanky"). We are adopting him from a rescue group that helps save dogs from the south where they have a much higher "kill rate" (isn't that a horrible term?!!!!), so they send them up here in van transports. Don't worry, they are USDA licensed transporters. We HOPE he'll arrive this Saturday, but if not then it'll be another 3 weeks from yesterday. Our fingers are crossed.

I'm sure some of you are reading this and thinking "wow, that's great". While others of you might be mumbling to yourselves and wondering why in the hell we would want to take on any more responsibility right now. Honestly, there are a lot of reasons why we have decided to do this. Many of them some of you just might not understand. But in particular there is this feeling of needing to be normal again. To us, normal is having a dog. And losing our dog Ty back in May when we had to put him to sleep for aggression after only 2 years was just HEARTBREAKING in an already difficult year. We just weren't ready then to adopt another dog so we have been dogless for the first time in 18 years. The kids are really longing for a dog, as are we. And we want Chloe to have a dog around her while she grows up. We think it is important.

So whether or not you understand WHY, we hope that you will share in OUR joy and excitement as we celebrate a new chapter in our lives. We'll keep you posted on his arrival.

Our Little Mainer in Maine!

Pretty girl.
Julie, Gretchen, Xander, Macy, Sadie and Phil!

Chloe in her little pool. This is a much better picture then the one my sister took when my mom was "babysitting" and all you can see are Chloe's feet as she clearly toppled over!!!
YAY for Chloe!
Chloe in the lake :)
Snuggles with mama.
The whole family!

Making Progress

So, I just wanted to write about 2 of Chloe's latest accomplishments. In the past few days she has started patting people on the back when she's being held up on the shoulder if the holder is patting her on the back. It is sooooo adorable! She also moved FORWARD yesterday with a commando-type crawl. It was VERY exciting. She's so motivated to move!!!!! :) It's so fun watching her learn new things.

We're struggling to get the CPAP on every night. It's hard being out of our routine and being more tired then usual because we're vacationing in Maine and staying up later with family, etc. It's stressing me out a little. She's not being tolerant either. We saw our pulmonologist and he was urging us to follow through with the CPAP and was going to write another letter to the insurance company to attempt to get overnight nursing care again. I called to confirm we had reached our max and there was no other benefit we could utilize and they said "well, you could put her in a skilled nursing facility". SERIOUSLY??? They'd rather pay more to have her in a skilled nursing facility rather than have someone come in and help us just because we're maxed on one benefit. I just don't get how they think. . . okay, I DO get how they think. They assume we won't use the skilled nursing facility! We need the damn help!!!!! ARGH.

It's fun having Chloe back in Maine at her birth place. The family is eating her up. One of my sisters who was holding her and hadn't seen her since December was commenting to me about how special she is. She said "you write about it all the time, but now I can really see it." :D It warms my heart to see her touching people the way she does. My niece Gretchen can't seem to get enough of her either. There's certainly no shortage of attention for her here!!!!

Better Late Than Never - Cali pics

The kids in the airport ready to go!
Seesters. :)

Climbing on the seal outside AT&T park at the San Francisco Giants game.
On the ferry back from the San Francisco Giants game! Chloe, what's that you're drinking???
Stacey, Amy and best man from our wedding and awesome friend Brian!
Xander, Macy and Sadie at the Randall Museum in downtown San Francisco.
The kids working on the kid-sized scale of the bridge with the actual bridge in the background at the Bay Area Discovery Museum in Sausalito (highly recommended!)

Swimmin' with the fishes.
Chloe THOROUGHLY enjoying being OUT!