Monday, October 5, 2009
Sunday, October 4, 2009
Saturday, October 3, 2009
25 Things
25 Things About Chloe - in no particular order!
1. Chloe was born unexpectedly in Maine while we were on vacation. She was 3 weeks early. She will forever be considered a "Mainer" because she was born there!
2. Chloe's name came to me when we were driving to her prenatal echo to find out how bad her heart condition was. Turns out it was the perfect name for her meaning the bloom or shoot of an early spring branch.
3. Chloe has an extra 21st chromosome which means she has Down syndrome.
4. People tell me Chloe has 3 phases of her smile. When you get to the third phase it's hard to resist!
5. Sierra, Chloe's middle name came from Stacey's truck, but is very fitting because it means mountainous terrain, which represents the "mountains" she has to climb to overcome her health issues.
6. Chloe had 7 hopsitalizations and 2 surgeries in the first 6 months of her life.
7. Chloe is absolutely in-love with her older brother Xander and older sister Sadie!
8. Chloe attends a toddler program that her mommy and friend run 5 mornings a week.
9. Chloe LOVES music.
10. Chloe is the 6th grandchild to my mother, 5th grandchild to my father and 8th grandchild to Stacey's mother. She is the 6th great grandchild to my Nana.
11. Chloe has a small opening to her airway which can make crying, eating and breathing difficult. But as she gets better it seems to get better.
12. Chloe likes to crawl on her belly to get things.
13. Our dog Miles likes to likes to lick Chloe.
14. Chloe is 13 months old.
15. Chloe takes almost all her liquid feeds through her g-tube because she has a lot of trouble drinking without choking.
16. Chloe LOVES her daddy.
17. When we read her books, Chloe smiles and laughs!
18. Sadie's favorite thing about Chloe is playing with her.
19. Xander says Chloe is adorable and chubby.
20. Chloe looks cute in pink.
21. We found out that Chloe had a heart defect and Down syndrome when we went for our 20 week prenatal ultrasound. There was no question in our minds whether or not to "keep" her.
22. Chloe has been involved in changing protocol at Yale New-Haven Hospital!
23. Chloe participated in several videos for Ds advocacy for the CDSC.
24. Chloe's first 2 teeth to come in are eye teeth and they're adorable (and sharp)!
25. Chloe is the love of our lives!
1. Chloe was born unexpectedly in Maine while we were on vacation. She was 3 weeks early. She will forever be considered a "Mainer" because she was born there!
2. Chloe's name came to me when we were driving to her prenatal echo to find out how bad her heart condition was. Turns out it was the perfect name for her meaning the bloom or shoot of an early spring branch.
3. Chloe has an extra 21st chromosome which means she has Down syndrome.
4. People tell me Chloe has 3 phases of her smile. When you get to the third phase it's hard to resist!
5. Sierra, Chloe's middle name came from Stacey's truck, but is very fitting because it means mountainous terrain, which represents the "mountains" she has to climb to overcome her health issues.
6. Chloe had 7 hopsitalizations and 2 surgeries in the first 6 months of her life.
7. Chloe is absolutely in-love with her older brother Xander and older sister Sadie!
8. Chloe attends a toddler program that her mommy and friend run 5 mornings a week.
9. Chloe LOVES music.
10. Chloe is the 6th grandchild to my mother, 5th grandchild to my father and 8th grandchild to Stacey's mother. She is the 6th great grandchild to my Nana.
11. Chloe has a small opening to her airway which can make crying, eating and breathing difficult. But as she gets better it seems to get better.
12. Chloe likes to crawl on her belly to get things.
13. Our dog Miles likes to likes to lick Chloe.
14. Chloe is 13 months old.
15. Chloe takes almost all her liquid feeds through her g-tube because she has a lot of trouble drinking without choking.
16. Chloe LOVES her daddy.
17. When we read her books, Chloe smiles and laughs!
18. Sadie's favorite thing about Chloe is playing with her.
19. Xander says Chloe is adorable and chubby.
20. Chloe looks cute in pink.
21. We found out that Chloe had a heart defect and Down syndrome when we went for our 20 week prenatal ultrasound. There was no question in our minds whether or not to "keep" her.
22. Chloe has been involved in changing protocol at Yale New-Haven Hospital!
23. Chloe participated in several videos for Ds advocacy for the CDSC.
24. Chloe's first 2 teeth to come in are eye teeth and they're adorable (and sharp)!
25. Chloe is the love of our lives!
Friday, October 2, 2009
Go Chloe!
Man is she quick with her commando crawl. It's not quite a commando crawl, because she does get her whole body into it, not just her arms. She just can't get her legs up under her body. But she's twisting and scootching and pulling with her arms - whatever it takes to propel herself forward. And it's usually for that super small choking hazard on the floor across the room! We're going to spend tomorrow trying to get the house a little organized so we can baby proof. the time has come. . .
Thursday, October 1, 2009
Rabbit Rabbit
Well, rabbit rabbit. That's what my family always says on the first of the month for good luck. Let's hope it brings some. :)
Chloe's doing GREAT lately. She has recently really started commando crawling. Now if she could just get up on those hands and knees there'd be NO stopping her! She's eager and ready to go! I'll try to post a video soon.
As for eating, well, that's going well too. The past few days she's taken 1-2 ounces of milk by bottle. I just love LOVE the chance to hold her and look into her eyes while she takes in the nourishment, stopping occasionally to coo and babble at me, then continuing on with her work. We snuggle and relax and just enjoy each other's company. It's the moments I've been LONGING for these long month feeding through the g-tube. I've even contemplated trying to nurse again, but at this late stage I'll just be happy with a few ounces from a bottle. We'll also continue to present the cup and honey bear (bottle with a straw) at meals to encourage her to drink in all forms. She's also really starting to take to more "solid" foods, as opposed to just purees and baby cereals. She loves fruits and veggies cut up into small pieces. Docs say she needs to be free from using the g-tube for 6 months before it come out. I think we're still quite a ways off from that.
Well, it's 31 for 21 - an attempt to get bloggers to post every day for the month of October which is Down syndrome month. I will do my best to post daily. . .
Chloe's doing GREAT lately. She has recently really started commando crawling. Now if she could just get up on those hands and knees there'd be NO stopping her! She's eager and ready to go! I'll try to post a video soon.
As for eating, well, that's going well too. The past few days she's taken 1-2 ounces of milk by bottle. I just love LOVE the chance to hold her and look into her eyes while she takes in the nourishment, stopping occasionally to coo and babble at me, then continuing on with her work. We snuggle and relax and just enjoy each other's company. It's the moments I've been LONGING for these long month feeding through the g-tube. I've even contemplated trying to nurse again, but at this late stage I'll just be happy with a few ounces from a bottle. We'll also continue to present the cup and honey bear (bottle with a straw) at meals to encourage her to drink in all forms. She's also really starting to take to more "solid" foods, as opposed to just purees and baby cereals. She loves fruits and veggies cut up into small pieces. Docs say she needs to be free from using the g-tube for 6 months before it come out. I think we're still quite a ways off from that.
Well, it's 31 for 21 - an attempt to get bloggers to post every day for the month of October which is Down syndrome month. I will do my best to post daily. . .
Sunday, September 27, 2009
Buddy Walk Pictures 09
Having a little fun getting ready for the walk!
Beautiful blue eyes against the beautiful blue sky. It was a PERFECT day.
Chloe's friend Teighan. Teighan is also the proud owner of an extra chromosome! :)
Our good friends the Letterios.
Teighan and Sandi.
Lou and Sonia Baghdady, News Channel 8.
Tori, Sadie and Lou.
Terry and Timmy.
The Mini's
Vvvvrrrrmmmm. Babies, start your engines.
Ready to walk!
BFFs
The kids take a beach detour.
Chloe's Crew
Casey, Van and Finn
The walk was AMAZING! Chloe's Crew has raised $770 so far. Donations are still trickling in as they are welcome up through the end of the year. There were over $13000 people and over $88,000 raised by the start of the walk. More donations were expected. It was such a glorious day with absolute perfect weather. A special thanks to ALL our supportors! Donators and walkers. Dillon's mommy Melissa and Jax were never far from our thoughts as they're both needing prayers right now. Hope you'll send some their way too (you can read about them by clicking on their names above.)
Friday, September 25, 2009
Buddy Walk 09
So tomorrow is our first Buddy Walk. We're sooooo excited. Chloe's Crew is all ready to go. We have a team of 25 walking and we've collected over $600 in donations! :) Wooo hooo. And since donations can continue to come in until the end of the year, we're hoping they'll continue to trickle in. We also received our team t-shirts FOR FREE from the t-shirt company. I'll post their name and website, if they have one, once I have it. It's very amazing when people reach out to help others.
I'll let you know how it goes!!!
I'll let you know how it goes!!!
Thursday, September 24, 2009
Prayers for Jaxson
Our little friend Jax is in the hospital and off to a risky surgery tomorrow. He is a VERY complicated case and his mom is very worried. Please say some extra prayers, send them some positive thoughts and mojo, or do whatever it is you do to help him get better and back home soon. You can visit his blog by clicking here. We're hoping and praying for you here Jax!!!
Wednesday, September 16, 2009
Sweet Ella Grace
Thoughts and prayers for our dear blogging friend Sweet Ella Grace! She has a bone marrow biopsy today to look for leukemia cells. Click on the link to see her blog and beautiful pictures of her (and hopefully good news about a clean biopsy). Spread the word. She NEEDS positive thoughts and prayers her way!
Monday, September 14, 2009
Back From Iraq
Obviously I haven’t just returned home from Iraq, but I feel, on some level, as if I have. Now I realize this comparison may seem extreme to some (especially my brother who has actually served over in Iraq), and I don’t mean to imply that the hardship we have faced is even CLOSE to the degree to which our nation’s heroes suffer during deployment, but what I am experiencing is like the psychological text book acclimation back into “the real world”. ‘What the hell is she talking about?’ you might be asking yourself. Well let me explain, for this blog is not only about my need to write and vent and do whatever cathartic expression I can to feel better, it is also a little bit of a window into my soul – a soul that is taking a journey of a lifetime.
The past few months have been intense for me. As most of you know Chloe’s health has had a nice gradual improvement for months now. While she has thrived, I have not had things so easy. I have racked my brain with how I could possibly be having a hard time NOW when we’re finally out of crisis. I started to realize I felt sort of “post traumatic”. But that didn’t completely describe how I was feeling. It got me thinking, though, more about war time and the transition from war back to home.
At times, watching your sick baby suffer or struggle wondering what will come next is in its own way, a constant war ground. Just trying to go through each day as if everything is fine just waiting to hear that not so distant enemy fire. But it hasn’t been the kind of war that leaves you in a constant state of physical threat. Rather it has been the kind of war that terrorizes your psyche on a daily basis. I think all humans have an ethical dilemma with attacking even the enemy’s children. Yet here I was on a daily basis, watching my child struggle to breath. Struggle to LIVE. I was living in my own war zone.
But now things are quiet. We’re back “home” to normal, or our new normal, that doesn’t involve weekly doctor visits and frequent trips to the ER. The suction machine is even beginning to accumulate dust. For us, the war is all but over. Chloe has been stable for almost 2 months now. A record amount of time without a single breathing episode. So what could possibly be my problem???? It’s like I said. I feel like I just returned home from war, back to normal, but things don’t FEEL normal. I’m not the same person. Things don’t feel the same anymore. And I’m left with that constant sense of guilt and confusion. There are people we have grown to love that remain in the trenches. . . over enemy lines. Even though I can’t help them when I’m there myself, there is some sense of togetherness that I can provide. Ridiculous, I know. But the truth. And I’ve learned to function in crisis. I’m having to relearn how to NOT be in crisis. And then when you finally start getting used to feeling good with your new normal you can’t help fight that feeling that you might have to go back after all. WHAT IF. . . What if you get called back to war. Back to that horrible place that although it has a sense of familiarity and you have glimpses of wanting to return, you REALLY REALLY can’t even imagine going back to that horrible place. In fact, really thinking about it can take your breath right out of your lungs. You watch the news waiting to hear of the latest battle. . . “swine flu”. . . “pandemic”. . . “children are particularly susceptible”. . . “children with underlying health conditions”. . .”death”. . . This is real world shit that I can’t escape, yet I have to. I have to take a deep breath and remind myself that we are home and we are safe and that no matter what the news says we’re not going back to that horrible place. But if we do. . . if we HAVE TO, ready or not, we will do our best and find the strength in our hearts and souls and the love that surrounds us, and forge on.
And to my little warriors out there that are still fighting the battle every single day my heart aches for you. I join your fight in my positive thoughts and prayers that I send your way. Hang tough my little heroes. You have AMAZING AMAZING strength.
The past few months have been intense for me. As most of you know Chloe’s health has had a nice gradual improvement for months now. While she has thrived, I have not had things so easy. I have racked my brain with how I could possibly be having a hard time NOW when we’re finally out of crisis. I started to realize I felt sort of “post traumatic”. But that didn’t completely describe how I was feeling. It got me thinking, though, more about war time and the transition from war back to home.
At times, watching your sick baby suffer or struggle wondering what will come next is in its own way, a constant war ground. Just trying to go through each day as if everything is fine just waiting to hear that not so distant enemy fire. But it hasn’t been the kind of war that leaves you in a constant state of physical threat. Rather it has been the kind of war that terrorizes your psyche on a daily basis. I think all humans have an ethical dilemma with attacking even the enemy’s children. Yet here I was on a daily basis, watching my child struggle to breath. Struggle to LIVE. I was living in my own war zone.
But now things are quiet. We’re back “home” to normal, or our new normal, that doesn’t involve weekly doctor visits and frequent trips to the ER. The suction machine is even beginning to accumulate dust. For us, the war is all but over. Chloe has been stable for almost 2 months now. A record amount of time without a single breathing episode. So what could possibly be my problem???? It’s like I said. I feel like I just returned home from war, back to normal, but things don’t FEEL normal. I’m not the same person. Things don’t feel the same anymore. And I’m left with that constant sense of guilt and confusion. There are people we have grown to love that remain in the trenches. . . over enemy lines. Even though I can’t help them when I’m there myself, there is some sense of togetherness that I can provide. Ridiculous, I know. But the truth. And I’ve learned to function in crisis. I’m having to relearn how to NOT be in crisis. And then when you finally start getting used to feeling good with your new normal you can’t help fight that feeling that you might have to go back after all. WHAT IF. . . What if you get called back to war. Back to that horrible place that although it has a sense of familiarity and you have glimpses of wanting to return, you REALLY REALLY can’t even imagine going back to that horrible place. In fact, really thinking about it can take your breath right out of your lungs. You watch the news waiting to hear of the latest battle. . . “swine flu”. . . “pandemic”. . . “children are particularly susceptible”. . . “children with underlying health conditions”. . .”death”. . . This is real world shit that I can’t escape, yet I have to. I have to take a deep breath and remind myself that we are home and we are safe and that no matter what the news says we’re not going back to that horrible place. But if we do. . . if we HAVE TO, ready or not, we will do our best and find the strength in our hearts and souls and the love that surrounds us, and forge on.
And to my little warriors out there that are still fighting the battle every single day my heart aches for you. I join your fight in my positive thoughts and prayers that I send your way. Hang tough my little heroes. You have AMAZING AMAZING strength.
A Test
Chloe's got the beginnings of a cold. I suctioned out some mucus this morning and there was NO gagging or breathing episodes! whooo hooo! So far so good. But this will be the test as to how she handles colds now. Wish us luck!
Sunday, September 13, 2009
Chloe in my new toddler program!
Playing in the sand pool with Sammy!
Chloe experimenting with shaving cream.
Chloe enjoys snack with her friends!
Saturday, September 12, 2009
Number 2, Comin' In
Well, Chloe's 2nd tooth is starting to poke it's way through. It is in the same place as the other one, just other side. I'm actually starting to think they're eye-teeth and not molars. Those are supposed to be pointy and the one that's sticking out is REALLY pointy.
She did GREAT standing today. Really enjoyed it. Puts a big smile on her face. And therefore our faces as well! She sat on a stool for a long time too. I'm just so proud of her. I'll post pictures of her hard work soon.
Chloe started in my program on Tuesday. It's been a little bit of a weird transition for me. The other kids are so much bigger and "better-abled" and so now she's suddenly seeming very small to me. She just looks like such a baby. But the program (which is a toddler transition and preschool prep program) is so good for her. It is so great for her to be around other kids. And it's great for me to be working again! :)
As for 9-11 and all the posts, I too will NEVER EVER EVER forget. I chose not to post about it because I find thinking about it is one thing, but reliving it enough to put my thoughts down in words was not some place I wanted to go. Maybe next year. But for this year I chose to remember privately. I thoughts and prayers are for everyone who was affected.
She did GREAT standing today. Really enjoyed it. Puts a big smile on her face. And therefore our faces as well! She sat on a stool for a long time too. I'm just so proud of her. I'll post pictures of her hard work soon.
Chloe started in my program on Tuesday. It's been a little bit of a weird transition for me. The other kids are so much bigger and "better-abled" and so now she's suddenly seeming very small to me. She just looks like such a baby. But the program (which is a toddler transition and preschool prep program) is so good for her. It is so great for her to be around other kids. And it's great for me to be working again! :)
As for 9-11 and all the posts, I too will NEVER EVER EVER forget. I chose not to post about it because I find thinking about it is one thing, but reliving it enough to put my thoughts down in words was not some place I wanted to go. Maybe next year. But for this year I chose to remember privately. I thoughts and prayers are for everyone who was affected.
Wednesday, September 9, 2009
NO MORE CPAP
Well, after all the frustrations we've been having with Chloe's CPAP machine, her doctor reviewed her previous sleep studies and determined that she can go without it because he believes she is just improving at this point and it isn't worth the struggle and frustration. Wooooooo hoooooooo! She slept in her crib last night with no CPAP stress. :)
Wednesday, September 2, 2009
She has a tooth!!!!
Okay, so maybe just the point of a tooth, but she's got one poking through!!! And true to Ds uniqueness it is one of her BACK teeth! Silly little monkey! It's a sharp little sucker too. Poor little thing. She's been crabby with hard poops, now a tooth and this is about when she should have a reaction to her last vaccines if she's going to.
More commando crawling! She is READY TO GO! Watch out!
More commando crawling! She is READY TO GO! Watch out!
Monday, August 31, 2009
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! :)
Saturday, August 29, 2009
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.
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.
Sunday, August 23, 2009
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! :)
Friday, August 21, 2009
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. :)
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. :)
Monday, August 17, 2009
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!
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!
Saturday, August 15, 2009
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!
Thursday, August 13, 2009
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. :(
Wednesday, August 12, 2009
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!
Tuesday, August 11, 2009
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!
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!
Sunday, August 9, 2009
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.
Friday, August 7, 2009
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!
Thursday, August 6, 2009
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!!!!
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!!!!
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