Dancing Through the Tulips

Bad Cold and a Mysteriously Cold Foot

2012-02-16T16:48:00.001-05:00

Our little Ms. has a terrible cold.

She’s had it now for over a week. Runny, gooky nose and cough. We got the vaporizer running at night and I’m using the saline spray, which she is surprisingly good about. She started out with a fever and cough, but that only lasted about 24 hours. And then the full-blown cold took over. But I think slowly she’s getting better. She still plays with her usual zest. The only WEIRD thing that’s been going on is she’s been waking with one ICE COLD foot and one warm foot. It’s very weird. She usually has TWO ice cold feet when she wakes in the morning, but 3x now it’s been just one foot. And it’s not consistent. 1x was about a week ago and then the other 2x were yesterday and the day before. I forgot which foot it was the first two times so I’m waiting for it to happen again to determine if it’s the same foot (the RIGHT one). I spoke to her cardiologist today (after waiting ALL DAY yesterday for NO CALL back) who said it didn’t sound like her heart, but that she would be willing to move up her April 30th annual appointment to mid-March. They want to look at her aortic arch. She doubts that’s the cause though because she thinks it would be cold on both sides and all the time. She also said if it IS occurring on the same side each time that she thinks our pedi should order a Doppler ultrasound to check her leg vasculature. I’ve got a call into him next. . . so stay continued. It’s probably one of those weird things that will turn into being nothing. Thank goodness she’s otherwise acting “normal” LOL because otherwise I’d be more worried!

IPad and Other Wonderful Things

2012-02-07T14:18:00.001-05:00

I was initially going to title this post “A Hot Mess” and talk about what a mess I’ve been with a potential sleep disorder, depression and anxiety plaguing me, but honestly, who wants to hear about that?? I have so many good things to write about and I’ve been so bogged down with my own . . . shall we say “set-backs” that I haven’t been able to muster the time or energy to properly update all of Chloe’s progress and good news. So here it is. .

Back in December Chloe was awarded a grant for an IPad. She’s 3 years old and is still fairly “non-verbal”, communicating primarily with some signs and word approximations. But although she has around 100 different signs, she wasn’t really using them or her word approximations to communicate effectively. So coincidence or not, once she got her IPad her language and communication skills, including signing, started to explode. Maybe it’s the more time I (and her AWESOME nanny) specifically spend with her since we use it together, or that school just happened to “click” for her around the same time. . . whatever the case is, she got the IPad and her communication started to soar. It’s so wonderful to watch her playing with it and repeating back the various words and imitating sounds. She still has a LONG way to go and struggles with certain sounds/words (like “Rudy” our cat, or “Chloe”), but what a gift to see her pride in her accomplishments.

Believe it or not, the other wonderful thing Chloe’s got going on is her health. Wow, I never thought I’d find myself saying THAT!!!! She’s doing so great. Eye doc, endocrinologist (thyroid), and pedi have all given her clean bills of health! This includes an all-clear neck x-ray (there is the potential for a small percentage of kids with Ds to have weak necks that can put them at risk)! She was also negative for Celiac Disease! We’ve got her cardiology appointment coming up in April, which I completely expect to be nothing but excellent. And I think that covers it. I mean, minus of course, a few colds and tummy troubles, which she was able to fight all on her own.

Chloe had her first school play-date a few weekends ago. She was invited to a “typical peer’s” house (that always cracks me up. . . what the hell does that mean anyway???) for a wonderful afternoon. I stayed with her of course, but she had a blast. I had maybe one fleeting moment of thinking, gosh it would be so different if Chloe didn’t have Ds. . . but then I remembered that Chloe wouldn’t be Chloe and I love her for who she is! Even though she had the attention span of a flea, she clearly brought joy to her friend and her friend’s family. They were thoroughly enjoying her. Yes, I know we are lucky to have found such supportive friends, and I’m sure there will be days when we are faced with judgment, but for today, things are good.

I can’t end without an update on my other munchkins (haa haa, they’ll probably kill me for calling them that!!!!) Xander celebrated his 11th birthday last week. 11 years is so hard to believe. Doesn’t it go by so fast???? He’s such an amazing kid with a wonderful sense of humor and maturity about him that ironically gets him in trouble. He’s enjoying his first year of offense in hockey and adjusting to being a middle schooler (our district has a lower middle for 5th and 6th and an upper middle for 7th and 8th). He’s an amazing big brother to BOTH Chloe and Sadie, although of course they all have their moments. Xander’s also been struggling with headaches and nausea for about a month now, but we’re working on getting to the bottom of it. . . we THINK they might be “stress headaches”. Stay tuned. . .

As for Sadie. . . well what can one even say about her? She’s a true girl in every sense of the word. She loves make-up and clothes and shoes and pretend play. She wants to be a teacher and LOVES first grade. She isn’t interested in “signing up” for anything. She’s definitely a homebody and enjoys doing stuff here. She’s also a great sister, although she certainly saves all her “challenging behaviors” for us at home!

I think that covers it. You don’t want to hear about Stacey. . . he’s a “hot mess” too. LOL Summer can’t get here soon enough (Spring is his busy time so we’re waiting for SUMMER!) But all-in-all we’re holding our own.

Some Pics

2012-01-14T19:35:00.002-05:00

Whirling Dervish

2011-11-15T10:31:00.001-05:00

Those are the words recently used to describe our dear sweet Chloe. I have to admit, I had to look up what the heck it was, but just from the sound of it, I figured it would fit her. According to Wikipedia.com, they are known as the Whirling Dervishes due to their famous practice of whirling (spinning one’s body in repetitive circles). Chloe does go through life spinning away. Tasmanian Devil also comes to mind. . . I picture her spinning through the house wiping things out as she goes, leaving a path of destruction behind. Or maybe even better yet, an octopus with many arms and tentacles, reaching for and touching, and yes, exploring, EVERYTHING she comes into contact with. A simple example has to be bedtime in the bathroom. She just had a good soaking and it’s time to get her out, while her sister remains in the tub finishing up. I’ve got her all dry and dressed and reach quickly for the toothpaste and toothbrush. As I let go of her for a mere second to put the toothpaste ON the brush, she darts (or whirls) over to the tub and in a flash has her hands in the tub and is hoisting a leg up over the side. I quickly grab her, pull her towards me and start brushing her teeth. As I again let her go briefly to get her sister out, Chloe’s fast like lightening speed leads her to the toilet, where plop, her hands are in. ARGH! Hand washing (and ARM washing, for that matter) and a whole new outfit are in order. All that in a quick 5 minutes. And this is typical of Chloe in the world, hands on or in everything, moving from one thing to another. Don’t get me wrong, I appreciate her desire to learn about and explore her world with the zest she exhibits. I truly think it is one of her gifts. From sick baby to this energized, curious little girl, I DO absolutely count our blessings. It’s just that sometimes, and I really do mean just sometimes, I find myself EXHAUSTED. Mentally and physically exhausted. I know that it’s okay and even on those days when I’m not even sure how I’m going to do this, I can think back to those days of struggle that SHE had and realize that this tough little cookie standing before me is just embracing life for what it is – a series of amazing wonders. . . even if it’s water in the tub or water in the toilet (ewww!), it is amazing to HER and I need to respect that.

It’s interesting. . . we spent this past Saturday at the CT Down Syndrome Congress convention. I was extremely moved repeatedly by the key note speaker and his stories of people with Down syndrome and how they have repeatedly overcome the odds, just like our Chloe. But I also found myself afraid at times. I don’t THINK of Chloe as having Down syndrome most of the time. I just think of her as Chloe. It helps me to NOT think about the future with her sometimes. For example, will she ever get out of this toddler-like stage of getting into everything????? Sometimes I don’t want to hear that the answer is she may not for a long time, because that just overwhelms me… to think like that. Because when I look at HER and see HER and not her Down syndrome I can focus on who she is and who I think she will become because of who SHE IS and not what Down syndrome “predicts” she will become. . . but being at the conference reminds me that she does have this thing called Down syndrome. And it is NOT who Chloe is, but is rather a very important PART OF who she is. And that is something I will embrace.

Halloween Pictures 2011

2011-11-14T19:55:00.001-05:00

The Mason-Mann Gangsta's - Halloween 2011

I'm Not As Strong As I Thought I Was

2011-10-25T15:01:00.000-04:00

I know it’s been quite awhile since I’ve blogged. Long story short, I got two new jobs, right when the kids started school, have since cut it down to one and am just now getting my head above water. Anyway, today I was watching Grey’s Anatomy during the episode when the baby Zola gets a bowel obstruction and is very sick. I found myself having to turn it off half way through, unable to watch a sick child. It just brings back such strong emotions to when Chloe was sick. I often think it’s all behind me and then the emotions resurface and they’re just so strong. Last week I woke Chloe up and she was clearly not right. Pale lips and very lethargic. My brain (and heart!) were RACING! What the heck is wrong with her??? She didn’t seem to have a cold or a fever or be showing any signs of usual sickness. Was it her heart? I could feel MY heart start to race and near panic set in. I could feel those old emotions coming back. They were so close I could taste them. About an hour after she got up, she vomited and I was actually relieved. “Ah ha, the stomach bug. Now THAT I can handle.” She napped and woke up as if nothing had ever happened. Meanwhile I was left with this “taste in my mouth”. This uneasy feeling, for no reason other than I could so clearly remember how, what felt like just yesterday, sick she was, and at times how close we had come. . . (to what I’m not sure. . . losing her? so hard to conceive . . .)

Last year I did a training where we talked about our experiences at the hospital and what we had learned about ourselves. Not surprisingly, most people commented about how they learned that they are stronger than they ever realized. For me, I had to say the opposite. Through my whole experience with Chloe I learned that I’m NOT as strong as I thought I was. That realization hit me pretty hard. It isn’t fun admitting that you aren’t strong. That maybe, in fact, you are weak. . . and vulnerable. I really struggled with that reality, and I know people will “yes, yes you WERE strong”, but I also know in my heart of hearts, when faced with the possible loss of my own child, I was NOT strong. And I have finally come to the level of acceptance that I can honestly say, it’s okay. No one SHOULD be expected to be strong in such circumstances. That it is OK to FEAR the unimaginable, when the unimaginable is a possible reality. It’s OK to lean on others and find strength in those around you. It’s OK to waiver in your own strength for some day, you will find the strength again. I think I am finally there. Finding my own strength again and accepting my limitations and, if I must say, my weakness.

One thing I MUST say in reflecting on my own sense of weakness is the strength I get from the people around me, even when I have no strength myself. I guess one of my greatest strengths in Chloe’s situation was building up my community to help support me when I DID waiver. So once again, thanks to all who have stood by us, held us up, held our hands and heads, provided shoulders to cry on, support and food and gifts, special outings for the big kids, an ear, a prayer, a positive thought. . . no help is too small. . . to all of you, thank you for being my strength. I guess when I look at it that way, I’m really never as weak as I may feel, as my strength is truly gathered from all who support me and us.

What DO you DO with ALL that FREE TIME????

2011-09-16T22:18:00.000-04:00

Come on. I know that's what you're thinking! Now that I've got 3, yes ALL THREE, kids in school, what the heck am I doing with all my "free time". You've probably already guessed, I'm watching tv in my pjs, robe and fuzzy socks, while eating away at some chocolately bon-bons. Yeah, and then reality slips in! I couldn't do that even if I HAD the time. Who could sit still when there's so much to be done??? Well, TRUTH be told, I've actually been sick with my husband AND my mom away and had the luck to not be working for a few days this week so I actually SLEPT. Yes, I said it, slept. I know you're jealous. It's been a LONG time since I was able to just sleep, during the day, while I was sick. Imagine. A sick day. Now granted I had to get Chloe off the bus midday and feed her lunch before putting her back down for nap, but I'm not going to complain, because I know how great I had it for a few days. (don't get me wrong, I was miserable and felt I was of course suffering, being alone and sick, but looking back, I am thankful a) I didn't get sicker and b) that I had the time I did to rest and take care of myself!!!). I know there are those of you out there that NEVER EVER EVER get a break (I'm thinking of you Lacey!), and I do NOT take my chance for a break for granted.

Anyway, that brings me to what I do with all my "free time" when I'm not sick. . . can you say, "laundry" and "housework" and "school paperwork" and "household management" and "paying bills" and "cleaning" and . . . you get the idea. It's amazing how much needs to be done. And then on top of all that, I've started 2 new part-time jobs. It's quite exciting really. I haven't "worked" in over a year (and gotten PAID anyway) and I haven't worked outside of the home in over 6 years! I'm riddled with fears of inadequacy and incompetence, but I'm pep-talking myself back into the working world. My 2 gigs are like polar opposites, in some ways, similar in others. I'll be working as a Local Childcare Coordinator for Cultural Care Au Pair helping Au pairs and host families navigate through their exciting relationships together. I will have about 9 families on my caseload. It's very part time. I'm also working in a reunification program for parents of children 0-3 who have had their child removed by the state in hopes of reuniting the family. This is also starting out very part-time, but will hopefully grow as the program gets more established (it's a fairly new program and represents a change in philosophy by the state to streamlining the reunification process). It's all very exciting. I start both positions this coming week, officially, although I've already done some work at both positions over the past several months. Wish me luck!!! I feel a little like a fish out of water. ;)

Oh, and by the way, daddy's back!!!!

A Little Family Time and a School Update

2011-09-15T12:55:00.001-04:00

The kids hangin' with daddy before he left to go out of town. We LOVE our daddy!!!! :)

Well, school seems to be going well for everyone. Chloe still gets on and off the bus with a BIG SMILE. I get generally great reports that she is happy and enjoying her time at school. I am so proud of her. What a big girl. Xander seems to be settling in nicely to 5th grade, although we had a little homework meltdown last night since daddy was away and basically mommy sucks at math. Yeah, I said it. Anyway, our new sitter came to the rescue and helped Xander with his homework! Xander has also started hockey again. It was actually nice to get back in the rink last night when I took him to practice. He's looking good. :) Sadie is also settling into first grade, despite a brief meltdown yesterday about not wanting to go to school. She does her homework without a fight and has a new group of friends "the BFF Bad Girls" I guess they call themselves. LOL Heaven help us. And to think she's only 6!!!!

Well, before I sign off, I have to send thoughts and prayers to my hubs and his family. They lost a wonderful woman after a heroing fight with breast cancer. I know she will be deeply missed by so many. She was truly an inspiration. We are thinking of all those who feel her loss.

First Day of School! SAY WHAT????

2011-09-07T14:11:00.003-04:00

Yup, it's true. Chloe had her first day of school yesterday and it was a smashing success!!!! She rode the school bus and everything. Smiles the whole time. As I strapped her in, she smiled, said "bye" unprompted, and gave me a kiss. She was ready to go!!!!

Off she goes!!!!

She wasn't the only one with firsts yesterday. Sadie headed off for her first FULL DAY of school in first grade and Xander headed off to his first day in middle school (5th grade in our town).

SUCCESS! It was big day for EVERYONE!

Happy Birthday CHLOE!!!!

2011-08-15T14:53:00.004-04:00

Despite a fever that she'd been running for 3 days, Chloe had a wonderful birthday! We celebrated her THIRD birthday in Maine, the place of her birth. For those of you who don't know her story, she was born while we were on vacation in southern Maine just around the 36th/37th weeks. Although we knew we were taking a chance by traveling that far along in the pregnancy, we decided to take the chance with ALL our supplies and medical records in hand. We figured if we were completely ready, she wouldn't come. HA! She showed us. We knew before she was born that she had Down syndrome and a "significant" heart defect that would require surgery 3-4 months after her birth. She was expected to be born healthy and continue being "healthy" until her heart required surgery months after she was born. When she arrived on 8/12/08 just about 4 hours after my water broke and an hour drive to the nearest hospital (Maine Medical Center) she came into the world just as they had expected, healthy and ready to go. She spent only a few hours in the NICU while they monitored and confirmed her heart defect and then roomed in with me. We were able to return to CT (a 5 hour drive postpartum - OUCH) in 2 days. All was going so well when at about 6 days she stopped eating and started sleeping A LOT. The next 6-12 months would be spent, at times, watching Chloe fight for her life. I'll never forget in the early days when she was failure to thrive (not able to gain weight) and really sick and our pediatrician (who we LOVE) stood over her shaking his head and said "I'm really worried about her". We were too.

Countless trips to the ER and hospital stays, including open heart surgery at only 9 weeks (we waited as long as we could!), g-tube placement and REMOVAL (wooo hooo), and eye surgery; numberous procedures and labwork, including many sleep studies; nursing care, g-tube feeds and CPAP all filled our first year. There were literally times we weren't sure she would make it. But now, 3 years after she was born, we look back with amazement. . . pure and astonishing amazement, that she has grown into the thriving, wonderful little girl that she is today. And weeks from now she will board a school bus and venture out on her own and into the world of preschool, away from mommy and daddy and Xander and Sadie. Out into the big world. . . and she is READY. Happy Birthday Sweet Chloe. Happy Birthday!

Vacation Sorrow, Swimming and PTSD, and a Fever

2011-08-10T22:52:00.007-04:00

Well, we’ve been enjoying a wonderful vacation in Maine with our family, albeit a little sad without my step-father Sam, who is ALWAYS missed, but especially on our trips to Maine. After a few days of feeling overwhelmingly sad, I’m managing now to focus less on his absence and celebrate in the spirit of his life. Not to mention Chloe’s 2 days away from celebrating her 3rd birthday in her birth state (Maine, where she arrived while we were on vacation!!!!), so I’m turning this frown upside down and learning how to enjoy being here ;)

Sam, Big Sam, Grandpa or "Bah-Pah" in Maine 2 years ago.

My mom Penny with the love of her life...

So one of our favorite adventures while up here is of course swimming in the lake. Chloe’s become quite the little water baby. She loves playing on the beach and playing around in the water. With a life jacket on we were enjoying some water time on her belly, blowing bubbles, when she inhaled a little water into her nose. She started to choke and panic and while remaining perfectly calm I reminded her to BREATHE. . . BREATHE CHLOE. . . BREATH. It seemed like FOREVER waiting for her to take in that breath, although I still remained calm because I saw how little water she took in and couldn’t imagine why she wasn’t breathing. She finally snorted out some water from her nose and then inhaled a great big breath of air. We returned to playing in the water and eventually returned to the beach. Her tongue was slightly bluish-purple, but she otherwise looked fine. She did get a little limp in my arms as I carried her back to the beach, but as I undid her lifejacket she bounced back to her “normal” self. She was totally fine and doing great, but I couldn’t stop thinking about how much the choking looked like when she used to choke as an infant when she had a small opening to her airway and would choke frequently on mucus plugs. As time went by I became more and more anxious that maybe she inhaled some water and was going to suffer from dry drowning (an uncommon but fatal condition where someone who has inhaled water into their lungs actually drowns within the first 24 hours of being out of the water because the water in their lungs breaks down the chemicals in the lungs). Even though I KNEW she was acting fine, I was anticipating spending the next 24 hours WATCHING her like a hawk. So to settle my own anxieties I called the pediatrician. If you don’t know my pediatrician, he is AWESOME!!!! He talked me down off the edge and even validated my sense of anxiety associated with her earlier choking episodes. “Of course, it’s like PTSD!” which I had already expressed to my family before making the call. I knew my extreme anxiety was totally related to “Post – Traumatic Stress Disorder” from when she was an infant. Thank GOODNESS I have a pediatrician who validates my feelings and emotions as a parent while still reassuring me that my baby is going to be okay (and if not, he’s there to help). Although relaxed and feeling MUCH better later that night I dreamed she died and I can’t even begin to express the emotions I was experiencing. I honestly don’t know how others go on after the loss of a child, other than the fact that you have no choice. To my friends and family who have lost a child, my heart truly breaks and aches for you because it is absolutely an experience no parent should have to endure.

Finally, I round out this post with a fever. . . Chloe started running a fever after a rainy-day nap with mama today. Nothing too alarming – about 100.8 with a temporal thermometer. After an hour on Tylenol she was up to 102, but it slowly came down. She’s been lying around feeling poopy, but nothing too terrible. We’ll see what tomorrow brings, but let’s all hope she is healthy for her BIRTHDAY!!!!!

Oh, ONE MORE THING. . . 3 successful potty trips. :) wooo hoooo!!!! One time she even signed “potty”, I took her to the toilet and sat her there and she peed. Yeeeehhhhaaaaaa!!!!!!

Wait, one more “one more thing” – Stacey caught a beautiful bass today. The kids were all so excited! :) Congrats honey.

And by the way, for anyone who is wondering, we have people staying at our house watching it and our dog! ;)

Catching up PHEW!

2011-07-17T11:02:00.002-04:00

Finally something to write about!!!! I’m definitely a summer blog slacker and I apologize if anyone comes here regularly looking for updates, but hopefully most of you are summer blog-reader slackers. :) So we had a big day a few Wednesdays ago, with Chloe’s 2nd PPT (Planning and Placement Team – I think that’s what it stands for anyway) and then her hearing test. Both went quite well. She’ll be going to the town inclusive preschool 4 mornings a week from 9-11:35. She’ll get 1 hour of speech, divided into 2 half hour sessions and 1 hour of occupational therapy, also divided into 2 half hour sessions. She is not currently scheduled to receive physical therapy but there is a plan in place to assess her for PT when she enters school in the fall. I’m really excited for her to start the program and think she’ll do GREAT! My only main concern is the first bus ride in and how confusing that will be for her, especially since she doesn’t have the language. It’s possible to drive her the first few days so she gets used to taking the bus HOME first, but that will all depend on my work situation (remember, I’m looking for a job). But all-in-all it was a successful meeting.

The hearing test was also a success, showing hearing in the normal to low normal range. We return in 6 months to see if they can get her to wear the headphones to tease out hearing in her individual ears. But aside from occasionally confusing similar sounding words, I have no concerns about her hearing. She hears even the slightest sounds!!!

The other day my mom and I took Chloe for her big speech eval with speech guru Lori Overland. She spent 2 hours assessing and working with Chloe. Sweet little Chloe worked her BUTT off!!!!! I was so proud of her! After working with her and speaking with me about her speech and speech history, Lori was fairly confident that Chloe has Apraxia. "Apraxia is a disorder in carrying out or learning complex movements that cannot be accounted for by elementary disturbance of strength, coordination, sensation, comprehension or attention." She told us in children with Down syndrome the outlook is fairly good and that although they struggle with developing speech (and it will take a LOT of work) once they get it, they “get it”. I have to read up more on this disorder, but I do know children with Ds with apraxia often don’t learn to speak until they are 5 or so. Any information anyone has would be greatly appreciated. :) *Chloe has since had her speech session with her Birth to Three Early Intervention Speech and Language Pathologist and she disagrees about the apraxia. Grrrr. Can’t we just agree??? Not sure what to make of it all now. . .

I can’t end this post without a quick mention of our recent trip to MT and ND. It was AWESOME!!! The kids were all great (minus Sadie getting sick with a 3-day fever and then Chloe getting sick with a 3-day fever and then my niece getting sick with strep, which Stacey and I then got, followed by Xander and low and behold, Chloe tested positive too, so we just assume that’s what Sadie had!!!!! PHEW). We had such a wonderful time with family and visiting the place where Stacey (AKA “daddy”) grew up! It was so awesome getting a chance to all be together as a family. It sucks being spread from CT to AK, but we have to try to make the best of it!

Okay, I better post this now, or I never will. . .
I've got more to say, but we'll save that for another time!!!

Smiles

2011-06-09T08:48:00.002-04:00

Wedding Weekend Round 3 Pictures

2011-06-07T13:15:00.003-04:00

Just look at that smile!!!!!

Trying to keep her from attacking him! She was actually quite gentle with him, minus a few occasional whacks. Notice the size similarity. She's 2 1/2 years and he's 6 months! Little girl / big boy!

I LOVE-A ME BIG BABY!

The monochromatic crew!

Beauties! My sis and MOB!

Wedding Weekend Round 2 Pictures

2011-06-07T13:01:00.004-04:00

Cousins! (including the bride)

MY MOODLES!!!!

Pretty Sadie

Handsome Xander

Look at those flaming red cheeks!

Big smiles at her first wedding!

The only picture I have of the bride in her dress! It was too hard to snap pictures while chasing Chloe around!

Stud.

My cousin Jonny and Xander.

Jonny loves his Chloe.

The Nanas. My mom and my Nana.

Great Nana, Sadie and Xander.

Chloe in her dress.

Chloe hugging another little Chloe.

The newlyweds, Anne and Matt!

Round 1 Pictures

2011-06-04T21:41:00.003-04:00

All buckled in and ready to fly!

Kicking the seat in front of her! Grrrr. We finally got smart 1/2 way through the flight and had my mom switch seats with the woman in front of Chloe!

Ah, a few brief moments of peace!

Even the big kids caught a few zzzzz's.

Xander and the newest member of our family Max!

My adorable nephew Max. I'm in LOVE!

Flying home. She was wiped out.

Is this the most awful picture you've seen? She looks so beat up! Bloody nose from falling out of bed a few days earlier; dry, red cheeks; and if you look closely you can see the half eaten pretzel in her mouth, that once I realized was there had to scoop out of her mouth without waking her!

Back home and being silly!!!!

Peace was Restored

2011-05-31T14:23:00.000-04:00

So we survived our trip! Okay, we more than survived it, we actually had fun. First off, let me just say the bride was BEAUTIFUL, the groom was handsome and the wedding was rockin’! It was sooooo awesome to be able to spend time with family. I got to meet my ADORABLY chunky nephew Max, see my niece Macy, along with my sister and brother-in-law all the way from Cali! And of course the rest of the fam. – aunts, uncles, cousins and my Nana! All totally worth it. Despite the downs of the trip, the ups were UP and I AM definitely glad we made the trip.

Our flight there was pretty good minus a mid-flight meltdown. It was all going well, when Chloe, who could reach the seat in front of her with her feet, decided to frantically kick the poor woman’s seat. She had previously been patting it gently with her feet occasionally, but for some reason, she decided it was time to go full force. Not wanting to make the poor woman suffer, I tried desperately to get Chloe to stop kicking and even resorted to holding her feet still. This in turn resulted in Chloe screaming a delightful sound. At this point, I had to choose – annoy one passenger or the whole plane. Then we had our ah-ha moment! My mom, who was seated behind our row, offered to switch with the woman, who graciously accepted. Chloe was now allowed to kick away (which of course she didn’t) and we were all much happier. During this time, my two big kids thought it would be an appropriate time to argue with each other, just to test my sanity, I think. But within a few minutes of a near complete meltdown on all our parts, they all fell asleep and peace was restored.

We thoroughly enjoyed reuniting with family and enjoying time with my new nephew Max. At 6 months, he weighs in at a mere 20 lbs! For those of you not familiar with baby weights, that’s the average weight of a 1 year old. You go on about your bad self, big boy. After dinner with the whole gang, I put Chloe down for bed while Max and the 3 big kids hung out in my sister’s room. The sitters arrived and we headed out for a rockin’ evening with the wedding gang. It was a great time. We returned to the hotel around 12:45 to find Chloe WIDE awake, along with Xander and Macy. Fortunately Sadie and Max were asleep. I moved Sadie back into our room, which totally disrupted her sleep causing her to completely freak out for the next 20-30 minutes while Chloe screamed as I tried to get her to sleep. Chloe eventually feel asleep around 2 am only to wake at 7:30am when she FELL OFF THE BED and onto a wrought iron table. She has a beautiful scraped nose to show for it. I was able to get her back to sleep and once again peace was restored.

The hotel was great with an arcade and kids water park. Everyone had a blast playing in the water area. The kids took full advantage of it both Saturday and Sunday. The wedding was Saturday night and the kids had a complete meltdown after the ceremony while waiting for food. When we discovered it would be passed food we decided to head to the burger joint next door to feed the kids. BEST move we could have made. Within 20 minutes they had smiles back on their faces and were ready to return to the festivities. I do regret not getting a sitter for the wedding, as the music was LOUD and it was late and too much for Chloe. The big kids were fine, but Chloe was a little over-stimulated and it was too hard for her to get around with all the people. But it all worked out in the end and we had a WONDERFUL time. The DJ was phenomenal and the bride was just so beautiful. And Sadie got to go to her first wedding ever. :)

After the wedding we had another evening of dealing with Chloe screaming and refusing to go to sleep, especially since she napped at the wedding. Xander rose to the occasional and spent about an hour with me trying to get her to sleep. He even pushed her stroller up and down the hall in his PJs while I rested in bed. After he got back, he set up the DVD player with Baby Signing Time, put her in her stroller to watch and said “Mom, you go to sleep, I got this”. He’s awesome. She eventually fell asleep and we moved her into the bed between Xander and me. Once again, peace was restored.

Sunday was the day –after party at the bride’s parents’ house, my aunt and uncle. We all had a GREAT time, despite Chloe waking up with a cold. My mom followed Chloe around most of the time, giving me some respite! The kids were great and we even got some alone time with my cousins and aunt and uncle after it was all over. I used to live near them when I went to college so they are a VERY VERY special family to me. After the party, we headed back to the hotel and now it was Sadie’s turn to have a complete meltdown. And we’re talking COMPLETE. Kicking, yelling, hitting. . . you name it, she did it. It lasted for what seemed like forever, but finally did end. And I was able to get Chloe to sleep without much fight AND put her in her pack’n’play. And yet AGAIN, peace was restored.

We headed home on Monday after a lovely breakfast with my sister and her family. The flight home was uneventful, even pleasant. The plane was bigger so Chloe’s feet couldn’t reach the seat in front of her. She even slept. And although I spent the majority of the weekend having some sort of anxiety or another, especially when thinking about our family reunion TRIP to ND and MT this summer (anxiety about the trip itself, NOT the reunion LOL), I felt such a sense of accomplishment on the flight home. I did it. I survived. We ALL survived and like I said, even had fun! So even though we’ll be away for 10 days next time, I think I can do this. ;)

Pictures to follow in next post!

Confessions of a Playdate Host and A Big Thump and a Cry!

2011-05-23T13:50:00.003-04:00

First we'll start with the playdate. I scheduled to have a playdate here at my house today. I was expecting 7 moms and their kids ranging in age from 4 months - 4 years (not counting the -0 -baby-in-belly). Leading up to the big day, all looked good. A forecast of beautiful weather meant we'd be able to play outside and have a picture perfect picnic. But then, days before the "big day" the forecast changed and each hour it seemed, got gloomier and gloomier. Now I tried not to panic, but I have to admit, I was actually a little stressed out about having everyone in the house! Well wouldn't you know it, it turned out to be one of the most wonderful playgroups. I have to say, I know some of the neatest women out there! I feel so lucky to have had such a great group here to play. It's days like this when I truly feel lucky. Granted, I DID have to stay on top of Chloe to keep her from "ROUGH LOVING" all the other little ones, but for the most part, even she did pretty well. And sorry I don't have pictures to share. I didn't even have time to get out my camera because I was on top of Chloe, but you can use your imagination for all the cuteness (Hess truck playing, baby caring, lunchtime together, piano playing and ABC sing-a-longs. . . you get the picture!) These gals even helped clean up. LOVE IT! Now one of these times I'll learn to be a better hostess and put out food and snacks, but I figured for my first one just having my house in order would have to be enough LOL.

Now for the BIG THUMP! After everyone left I put Chloe up in her crib for her nap - after some books, of course ;) I came back downstairs to clean and after a little while I heard a loud THUMP on the ceiling above me. I paused for a moment, as she will often bang the side of her crib quite loudly, then sprang to my feet as she let out one of those "I'm hurt" cries! I ran up the stairs, taking several steps at a time and bound into her room to find her standing there, OUTSIDE of her crib. She had put the pillow in the corner and either flipped or crawled out. She cried for a few minutes, but I didn't see any noticeable boo-boos and she honestly calmed down fairly quickly. I tried rocking her to sleep, but after no success, I simply removed the pillow and lay her back down. She is now resting peacefully. Phew. I tihnk it's time for ME to take a nap.

A Lot on My Mind

2011-05-20T15:35:00.000-04:00

Boy, do I have a lot on my mind. I’m not even sure where to begin or what if any of this is “blog worthy”, but as I use this blog as a sort of release, I’m going to write anyway. So let’s start with our upcoming big trip. Next Friday, a week from today, I’m flying with my mom and the three kids to Minneapolis, MN for a wedding (and as for my disclosing to the world when we’ll be away, my hubs isn’t coming and our big mean dog ;) will be home guarding our house, so I’m not worried). Anyway, so we’re having a family wedding next weekend and a good ol’ family gathering so OF COURSE I’m taking the kids, but then it dawned on me. . . WHAT WAS I THINKING??? I’m TERRIFIED. I mean, let’s not even get into the whole anxiety of flying (I just thought of THAT part of the trip – YIKES), but I’m thinking more of traveling with my wonderfully exuberant little two-year-old! Don’t get me wrong. I LOVE her to death! She brings a joy I hadn’t even known existed. But I’m completely stressed about traveling with her. I picture her screaming in her car seat – no, not crying, but literally SCREAMING on the plane. And climbing the walls of the hotel. Shrieking during the ceremony because I won’t let her charge the alter. . . pulling plates off the table at the reception. . . destroying my aunt’s house. . . running every minute of every day that we’re down there. That’s what I picture. And I have to admit the worst part of all this is ME!!! I’m the one who doesn’t do well with change. I like my routine. I like to know she will have a place to play while I take a few minutes and (breath) check things on my computer or that she’ll take a nap in her crib while I (breath) shower and clean up. AACK. I don’t want to sound complainy at all or like I take my dear sweet Ms. Chloe for granted. I appreciate that there are those who have lost their precious little ones and would sacrifice anything to have MY problems. But nonetheless, I still feel the stress (along with the guilt) of traveling with my very “special” little girl.*

*Before I go on, it’s important for any family members who might be reading this to know that I am SOOOO EXCITED for the wedding and for everyone to share in the joy that is CHLOE. It’s just the logistics that are freaking me out!

Okay, so as if I haven’t said enough already… my other big stressor is the old cheery job-search. I don’t know WHAT to do with myself. I’ve worked in Early Childhood and Early Intervention for 20+ years now and that’s where my passion lies, but I don’t know what to do now that it’s time for me to return to work. I haven’t “worked for someone else” in over 10 years. I’ve opened and run 3 different businesses and loved doing it. My last two I ran out of the home and would so love to do again, but we moved and our new location is not conducive to running a school out of. And I’m pretty sure it’s too expensive to do it out of the home. Too many expenses. And honestly, as much as I want something outside of Chloe and my other two kids, it’s hard to take that step away. I know, I shouldn’t think of it as taking a step AWAY, but that’s how it feels. I think this fall is a good time because Chloe will be starting preschool, but then I worry it won’t be a good time, because she’ll “just” be starting. I’m hoping if I put my feelers out there that things might just fall into place. I really love running toddler programs that are fully inclusive. But my big dream is to have a fully inclusive family play center with drop-in play as well as high quality babysitting and toddler / preschool programs. Someday hopefully I’ll find my way back to my dream. Too bad it always takes money. . .

Phew. I think that’s enough delving into my psyche for one day. I’ll end this post saying how thankful I am that we’re all healthy and for the most part doing well. Despite the stress that comes along with raising a child with special needs (traveling with and the financial strain caused as a result) life couldn’t be any more beautiful. Of course we feel as though we could “do without” these challenges, but lessons will be learned, new joys will show themselves and we WILL prevail in the end. Thanks for bearing with me in this long picture-less post. I promise to share some photos soon (by the way, I might be getting a new camera for my birthday so if anyone has any advice for a new camera let me know).

Our Little Rock Star

2011-05-17T16:57:00.001-04:00

Scroll down to pause the blog site music and watch Chloe rock out with her PaperJamz guitar!

A BIG Day

2011-05-13T13:33:00.002-04:00

Today was Chloe's BIG DAY! She went to her new preschool for a visit this morning! She did great. The teachers and staff all seemed to LOVE her and told me how impressed they were with her. She greeted everyone with hellos, sat (well sort of sat) for circle time, danced during movement time and participated in centers (rice table, playdough and table toys). She was a busy little beaver. Unfortunately our time was cut short by a fire drill, but she seemed to do really well with that - she just went with the flow. Although it was hard to see my little baby surrounded by all those big kids, in the fall, she'll be quite a bit older and she won't be so much "the baby". And she may be small, but her personality is BIG so I'm not too worried about her. And most importantly, the program seemed good and a place I will be comfortable sending her.

Here are some pics from the last few days including one of her just after she got back from "school".

A Trifecta

2011-05-10T09:17:00.003-04:00

Chloe's got a trifecta! A nasty toe nail infection, a cold and teething. Wait, if you throw in the persistent rash on her face and butt, what does make it then???? LOL Anyway, we went to the doc yesterday and he gave her some oral antibiotics for the toe and recommended 2ce daily soaking of it in hopes of avoiding a trip to the podiatrist where they would have to dig out the nail (ewwww). Hopefully we can avoid that! I'm including a picture - don't look at it if you're squeamish. Chloe remains in unbelievably good spirits considering she looks like a mess. She's a trooper.

A Pheonix

2011-05-08T12:26:00.004-04:00

That's what I feel like. A phenonix rising from the ashes! Okay, that may be a little dramatic, but I've been sick for the past 3 days and life has felt like. . . well. . . hell. My hubs is not able to take days off in the spring season (he works in lawn and garden) and in fact, works a mandatory 6-days-week, so I was left to care for the three kids while sick as a dog. And sometimes when you're sick your kids can be GREAT - understanding and supportive, but not MINE. At least not this time! They were demanding and bored and just plain old rotten. Oh, and my mom was away through all of this, so although she lives "with" us, she wasn't able to help either. And all this on my birthday weekend. And just when I felt like I couldn't take it anymore, I was woken this morning to breakfast in bed, made by the hands of my 10 and 5 year olds. A handmade bouquet by my 5 year old and a beautiful handmade card accompanied by a beautifully sung mother's day song. I was delivered straight from the bowels of hell into heaven. It was THE BEST mother's day/birthday I've ever had. We continued the day by snuggling in bed, me and the big kids while they gave me alternating back rubs! :) Then we played the Game of Life (because that's "my favorite game"). We followed that up with a nice relaxing bath and then I enjoyed reading all my Facebook birthday wishes. Now we're on to swim classes and more celebrations, as my mom gets back VA. It's a grand day!

Tomorrow I think we're off to the doc as Chloe seems to have an infected toe! It doesn't seem to bother her, but it looks nasty, so I'm suspecting a little antibiotic might be in order. She's also got a bad cold, as does Sadie, but they don't seem to be getting what I had! Thank goodness!

Hope all my mommy friends out there are having as special a day as I am. You ALL deserve it! We work hard for our families. :)

Sweet and Innocent??? And a Spring Photo Shoot

2011-04-29T14:46:00.002-04:00

She's sweet and innocent right????

I mean just look at her with her sister, with that sweet smile. . .

Thank you sweetheart. . .

And her too. Sweet, young innocence. . .

DON'T BE FOOLED!!!! If you look closely at Sadie's left cheek you'll see the bite marks of a NOT so innocent and/or sweet 2 1/2 year old. Don't get me wrong. They're both cute and all, but boy do they have their moments!!!!!! And Chloe lately, well, not just lately, but for what seems like forever has been into EVERYTHING. And I mean EVERYTHING. And not just into it all but ON it all. She's been climbing since before she could walk and now her favorite places to be are on top of things, like the kitchen and dining room tables or the piano. . . I'm getting to my wits end and don't know if there is a light at the end of the tunnel or if this is just how Chloe's going to be. A wild girl. When it comes to child development, I consider myself fairly savvy. I get how it works and for the most part hang on to the old saying "this too shall pass". But with Chloe I've been waiting and waiting and it ain't passin'! I know I WANTED her to walk and climb, but REALLY??? On everything??? This girls got no safety awareness. She would dangle from the kitchen light fixture if I let her stand on the table long enough (yes, I said "STAND on the table"). Like lightening she pushes the chair over, climbs up on the table and quickly stands up, sometimes rocking the table gently back and forth, just to see if she can actually give me a heart attack before I can reach her. I know she's trying to kill me. One way or other, she's trying to do me in. And she's gotten pretty close a few times. So if anyone has any encouraging words of advice, please let me know. We have baby proofed a big part of the house, we just can't seem to get the kitchen to be a safe place, so we tend to stay out of there. But I'm tired and need some assemblance of hope that this WILL pass or that I'll find the strength and wisdom to beat her at her own game. ;)

Eye Doc and Transition Meeting

2011-04-27T14:52:00.003-04:00

We've been busy, just like I said. Appointment after appointment this week. But so far, so good. As already reported she ROCKED her cardiology (heart) appointment. Yesterday after her morning physical therapy (in the mud outside, which she LOVED) we headed to the eye doc. I won't even get into the HOURS of waiting that we did just to be seen for MAYBE a total of 20 minutes (okay, well, I guess I DID get into it a little bit), anyway, the short of it is she continues to look pretty good ("look" haa haa, sorry, no pun intended). There doesn't appear to be any strabismis present (turning in), other than some mild turning in when she looks down. But that turn doesn't "qualify" as strabismis because it's too minor. So at this point, we'll go back in 2 months and just continue to monitor it. I do see her right eye turn in occasionally, but hopefully that's nothing. The bottom line of the appointment was that her eyes look good and we're still in a wait and watch pattern, while she continues to "heal" from surgery.

This morning was the BIG transition meeting (((drum roll)))! The one that talks about my baby not being a baby anymore. I know, that sounds dramatic, and really I'm not too wound up about it. She's my third, so the thought of her going off to preschool just seems so natural. And I'm an Early Intervention teacher so I know that the teachers and therapists will get to know her and love her and provide her with a developmentally appropriate, stimulating, safe and fun environment. And she's going to LOVE it. She LOVES playing with other kids and just playing in general, so I know she's just going to eat up the opportunity to engage with others, and soak up the beneficial aspects that a good preschool program has to offer. So I guess the biggest question for me is "is it a good preschool program"???? I've heard it's great, but I have pretty high standards, coming from being in the field, so I hope it meets my own personal and professional criteria! I think (THINK) it will. Let's hope! So anyway, I'm rambling, but the gest of the meeting was that she'll come in for a morning of observation where she'll get to play with the kids in the classroom (and I'll get to observe the classroom too) and then I'll come in alone another time and participate in the Vineland assessment interview and then we'll meet again in June to make the determination of what is to come for her programming. Today was more a planning for the meeting in June. They said she will automatically qualify for services because she has a developmental diagnosis, so now it's just a matter of figuring out what her services should specifically look like. Fun fun. But so far, so good.

Finally we're in the process of tweeking her home Birth to Three plan. It's so frustrating to me because it seems like they're always trying to cut back on services from her and she's just flourising! To ME I see her flourishing at least in part DUE TO all the services she's being offered, so cutting them seems counter-intuitive to me. And she's only got 3 months left, so I don't understand why they would want to cut them now. Her PT suggested she go down to 2/ce month from once a week, but she's NOT where other 2 1/2 year olds are! She's still a newer, somewhat unbalanced walker. She can't go up or down stairs on her feet. In fact, she can barely manage a step on her own. FORGET about running or jumping or walking down bus stairs. I mean, does this really sound like a 2 1/2 year old who should cut back on her services??? I'm stumped. So I guess as we re-write her plan I have to figure out what it is I think she really needs and fight for it. Fortunately, my mom said she'd help. I think it's time for some back-up.

Well, I think that about covers everything. PHEW! If you've read this far pat yourself on the back! ;)

Cardio Update

2011-04-25T14:45:00.002-04:00

After being there for what seemed like FOREVER because there was a "spot" on her echo (turns out it's something that's always been there and hasn't changed at all over the last year, but a new tech made note of it, so the cardiologist had to review the echo more closely) we got the great news that Chloe continues to ROCK her repaired heart. She still has moderate valve regurge so she'll continue on daily meds, but as expected we can switch to 2ce a day (from 3x per day). It's still a compound (meaning we have to drive 30 minutes to get it filled), but we're going to look into mail order. Hopefully we'll get it all worked out. If not, whatever. We'll just have to go to our old town once a month ;) It's worth it.

One appointment down. . . 7 to go (counting therapy!)

Dr. Appts and Some Easter Pics

2011-04-25T08:47:00.003-04:00

Well, this week is busy with appointments and meetings. We have her annual cardiology check-up today, which I fully expect to be routine. She does have a cough, but no fever and does tire sometimes when drinking a bottle (yes, she still takes a bottle), but I don't think it's heart related. I'm expecting a good report from her echo, a change in medication so we don't have to drive 30 minutes once a month to pic up a compounded medication and a change in dosing from 3x/day to 2x/day. So fingers crossed that I'm on the right track. She also has her follow-up eye doc appointment tomorrow, which I also expect to be routine. Just a check-in. Then Wednesday morning is the BIG transition meeting from Early Intervention to Preschool. I'm nervous, but excited. I'm think I'm ready for her to be in preschool. It'll be a good transition for her. She can use the additional stimulation with peers (aside from just her older siblings) and I think the structure will do her good. In addition to all that, her usual therapy! It's going to be a busy week (oh, and throw in baseball practice, 2 games, Opening Day ceremonies, a mammogram (for ME! LOL) and a half day from school to boot!)

Okay, here's some pics from Easter. Enjoy!

A Bit of Sunshine

2011-04-20T18:06:00.003-04:00

Well, I thought for sure posting about how healthy everyone is would for sure jinx us, but everyone remains good! :) Horray! In fact, everyone is even in pretty good spirits, thanks in part to a visit with some friends today! And when everyone else is happy, that makes for a happy momma.

Here's a little video of Chloe playing with her brother. A) you can see what a wild girl she is and B) you'll now understand why she's so rough with her friends! Obviously I'm not helping matters, but she's just so darn cute with Xander I have a hard time resisting! Enjoy a little sunshine. . . (it helps to have the volume on so you can hear her laughing, but you might want to scroll to the bottom of the page and pause the music - but you can also watch it with the music playing)

Photo and video editing at www.OneTrueMedia.com

All Is Quiet

2011-04-15T10:49:00.003-04:00

Things have been quiet around here lately. I know, I should be careful what I say, but everyone's been pretty healthy and things have remained status quo. Chloe's had a slight cold and cough, but that just seems to be a constant now, so we're used to that. So no complaints and not much new to report.

Chloe's latest thing in the tub is putting her face in the water. We start swim lessons in a few weeks and I'm interested to see how she does. Hopefully she'll enjoy it.

Leaving on a Jet Plane

2011-04-08T17:13:00.004-04:00

Okay, well not a jet plane, but rather a train. And it's not me, but rather my first born. He's flown the coupe. Left home. Gone away. Yes, my son has left me. I know, I'm being dramatic, but this is the first time my son has gone off, on a train, for a weekend away from me. Don't get me wrong, we've spent many a night away from each other when Chloe was hospitalized frequently as an infant, and he is, afterall TEN years old, AND he IS with my mother, but I can't stop feeling anxious that he's in a different state, a 5-hour-train ride away, no less. I admit, I miss him already (he just left this morning). What am I going to do when he goes off on his own??? I recently saw various posts on Facebook about daughters being like sunshine (or some crap like that), but hey, sons are pretty rockin' too. :) Hope he has an awesome time. I love my Xander!

And a quick update on Chloe's hair drama. . . I've been putting a ponytail in and she usually keeps it in for a few hours at a time before ripping it out. I'm trying to consistently put it back in so maybe she'll just get sick of pulling it out.

Other than that, things are good. Chloe's got a cold with a cough, but it's not a major thing. Here's hoping it stays that way.

And we start the day with a Tumble Down the Stairs!

2011-04-06T09:38:00.002-04:00

Chloe got ahead of me this morning and started down the stairs backwards. She's actually quite good at it, but this morning she was wearing this (adorable) skirt and got her feet caught up in it and before you know it, she was falling, backwards, head over heals, all the way down the long staircase! She was only about 2 steps from the top so it was a long, dramatic fall to the bottom!!! But all in all, she fell pretty "well", not hurting herself, but really only scaring herself. I ran to her side and comforted both her and Sadie who had watched helplessly from the top too. "I almost cried when she cried mom!" It was scary for all of us! Thank goodness for a thick carpet padding on the stairs. I think that really saved us! And all this after taking a face plant off the couch last night! I swear, I keep a close eye on her, but she's always on the go-go. She's one tough cookie!

A Little Bit of Spring

2011-04-04T08:55:00.003-04:00

So we got out and enjoyed some sunshine yesterday. If you look closely at Chloe's face you can see just how much she enjoys being outside. And now that she's walking I don't mind taking her out so much!!! Xander loves to go out and play lacrosse or baseball and Sadie just loves to run around! Gotta love spring time and the chance for more fresh air!

Some pics. . .

2011-04-01T10:09:00.003-04:00

Cooking with Sadie. . .

My BIG kids, Sadie and Xander!

Enjoying Grandma Linda's goulash, made by daddy. YUM!!! Remember that girl with the g-tube who wouldn't eat???? For all our friends out there with Ds kiddos on g-tubes, it WILL come! Look what you have to look forward to! ;)

Time for a goodnight story with big brother Xander. . .

New Mission

2011-03-29T15:09:00.003-04:00

I have a new mission in life. . .

. . . to get Chloe to keep a barrett in her hair!!!!!

And just wanted to share this cute picture of Sadie. :)

Guess who. . .

2011-03-28T16:49:00.002-04:00

has a cold!!!! AGAIN. Will you look at that RED FACE! Poor baby.

The Pianist

2011-03-28T08:05:00.002-04:00

Kirill's Story

2011-03-25T09:54:00.002-04:00

Please read the following story - cut and pasted from another blog. You can visit the blog HERE for pictures and more information. Spread the word. We need to help this family, some how. . .

Kirill's Story

Please feel free to share the following on your blogs. It is a summary of our adoption journey so far. Please help us spread the word. We are hoping somehow someone will be able to help us.

Two years ago Greg and I began praying for God to do whatever he wanted with our lives. We handed him a “blank check” so to speak, and told him to cash it. He opened our eyes to children with disabilities wasting away across the ocean in Eastern Europe. We joined God and started our adoption journey.

Our family is more than equipped to handle a child with special needs. I have a degree in Early Childhood Education. I am a member of the Board of Directors of Best Buddies of Alabama. I have volunteered for RISE and Eagles’ Wings. All of these organizations serve individuals with special needs. My husband I have close friends and family who have special needs and we are a big part of each other’s lives. Our wedding party included some of these special people. Our involvement with individuals with special needs led us to adopt a child with special needs; specifically, we chose Down Syndrome.

As we prayed over the faces of thousands of orphaned children with Down Syndrome, we ultimately chose a little boy named Sergey from Russia. Eight months later, as we neared the finish line of our adoption, one of Sergey’s family members in Russia stepped forward to adopt him. We were heartbroken for our loss, but God showed us that we were following him, and his ways are perfect. We knew we still wanted to adopt, so the way we saw it, two children would find homes because of our journey…Sergey went to his family and now we would choose another child to come into our family. We took great comfort in knowing that God could see this when we first committed to Sergey! We were honored to be a part of his plan.

Shortly after losing Sergey, we received a new referral with a grainy photo of a four-year-old blond-haired boy wearing pink glasses named Kirill. We were instantly in love with him. We had to re-file a lot of our paperwork because of the change in referrals and regions of Russia, but we were fast and we thought we were looking at three more months at the most until we would have Kirill home.

That was well over a year ago.

Since then so many things have happened. A tragic story of an adoptive mother sending her child back to his country alone on a plane with a note pinned to his shirt rocked our world…he was from Russia. Adoptions in Russia came to a screeching halt. Kirill’s region stopped processing adoptions for eight long months. The judge refused to accept any Amercian adoption cases until an official treaty was signed between the United States and Russia.

Even though we wouldn’t be able to finalize the adoption in court until the treaty was signed, we were allowed to go visit Kirill and sign our official petition to adopt him in August 2010. We fell more deeply in love with him. This was our son.

During that time, we found out that Kirill is the first child from his region EVER to be adopted with Down Syndrome. A birth mother keeping her child with Down Syndrome is unheard of in this area of the world. Adoptions of children with Down Syndrome just don’t happen there, these children are literally hidden away from society in orphanages and mental institutions. As our process continued, it became apparent that Kirill would be a pioneer. If our adoption was approved, it would pave the way for other children with special needs to be adopted from this region.

Then, a miracle happened around Christmas and the judge in this region suddenly changed her mind and began processing American adoptions again. We were elated. Could this be the light at the end of a very long tunnel? I was somewhat nervous about Kirill being the first child adopted with Down Syndrome from his region, but our agency was very confident that if we got a court date, our adoption would be approved. In seventeen years, they had never had a case rejected IF the family was issued a court date. We were told not to worry, so I didn’t. After meeting the judge’s requests for several supporting court documents, we were finally granted a court date-March 17, 2011. St. Patrick’s Day…I was thrilled. This would be our new favorite holiday! Our son was coming home!

Our other son, Clayton, who had just turned three when we started this adoption process, has prayed fervently for his brother. He is now almost five. When we told him Kirill was coming home, oh my…we had an excited big brother on our hands! At one point he even went to his room, dumped out his toy cars and divided them into two stacks…one for him and one for Kirill.

Last week, as we sat in the courtroom and suffered through five agonizing hours of difficult questioning, we were not prepared for anything but an approval of our case. Two doctors, two social workers, and the Minister of Children’s Services all made very strong statements on our behalf. They fought for us. Hard.

But when the ruling was read, the judge said, “Your application to adopt is rejected.” The basis given was that Kirill was “not socially adaptable” due to his “medical condition” and he was better off in an institution than in a home with a family. As the judge read her ruling, she stated several times that we were a good family, that we met all the criteria to adopt a child, but that she would not approve our adoption because Kirill has Down Syndrome. She told us that we could adopt another child, because legally our application had no problems according to Russian adoption law. She said she would approve our adoption for a “typical” child, but not this child. Why? The only reason? Because he has Down Syndrome. Even though we were approved by our home study and by the USCIS to adopt a child with special needs. It makes no sense whatsoever. Denying a child a family because he has Down Syndrome is a violation of human rights at its most basic level!

It was like a terrible dream. We were so unprepared for this outcome. As we left the courthouse in a mental fog, the doctors and social workers that had testified came to us and said, “If you appeal, we will fight for you. Appeal. Fight this decision.” Of course we were going to appeal…I could no more walk away from our biological son, Clayton, at this point. Kirill is just as much my son.

So here we are, asking God to move the mountain that is standing between Kirill and us as we appeal to the Supreme Court in Moscow. There are also three other families who are in various stages of adopting children with Down Syndrome from Kirill’s region; one of the families has a court hearing set for next week.

We are hoping that someone will hear our outcry and help us bring our son and these other waiting children home. His adoption will set the precedent for many other children in his region. There are 98 children in his orphanage with special needs alone. It is one of many orphanages in this region that houses children with special needs. This is about more than just one child, the lives of hundreds of children with special need are at stake. Please help us.

Call to Action

2011-03-22T17:47:00.002-04:00

So I've been stirred lately. Stirred by the drama going on with the angels abandoned by their parents and left to be institutionalized like worthless pieces of trash thrown into the dumpster. Stirred by something I find hard to comprehend. I'm speaking of the fate of many children with Down syndrome and special needs in other countries, where these special children are not valued. I mean, maybe this isn't an issue in the states because there is more advanced medical care and therefore more early detection and abortion, but I'd like to think the human race is better then that. I would like to think we have learned to value the lives of children with special needs. I know I have. I was raised better then that. Anyway,this is obviously a HOT issue for me and something that I feel I MUST address and become active in. I haven't figured out how or what to do yet. I'd LOVE to adopt, but that is just not in the cards for us right now. Maybe some day. . . until then, I have to figure out HOW to get involved and it starts with this post and hopefully the education of some. I urge every one of you to follow this link HERE to read more about Reeces Rainbow and see all the waiting children thrown to the way side. And I urge you to get involved, if you can find it in your hearts.

Happy World Down Syndrome Day

2011-03-21T09:26:00.000-04:00

Feeing better, Visitors, and Prayers

2011-03-12T16:12:00.004-05:00

Chloe's been feeling MUCH better lately. She still has her cough and now a runny nose too, but the fever is gone and she's back to her old spunky self. Her new Physical Therapist who observed her at play on Thursday was impressed with all her wonderful skills. The biggest skill we need to work on, she said, was safety awareness!!!! I said "you mean because she head dives off the couch?!?!" That's a BIG one! During her monthly team meeting it was fun for me to report all she's been doing lately - adding more signs, actually SAYING a few words (like "hi", "dada", "go", "stop", "dog" and "down"), using empathy to comfort friends, walking with more confidence, etc., etc. The list went on. This is a proud mama post. Gotta have those once in awhile.

Last weekend my cousin Peter came to visit from NYC. My kids REALLY enjoyed having him here. Chloe, Xander and Sadie all warmed right up to him! My dad also made it by for a visit. The kids call him Grampy or the G'Man. ;)

Please pray for our dear friend Dillon who underwent open heart surgery yesterday. He is doing GREAT and was extubated today, but he still needs positive thoughts, prayers and mojo until he's home and resting comfortably! His picture is on the right side of the blog. He's VERY special to us!

HELP FOR LERA

2011-03-10T13:35:00.003-05:00

I am writing with a huge favor!! I am sure that many of you are familiar with Lera who has been waiting to be adopted from Russia for what seems like FOREVER!! Her family had an appointment this week to go and meet her for the first time and it got rescheduled because they still don't have enough money. The amount they need keeps going up and even though they have almost $20,000, they still need another $20,000. Here is the really bad news!!! Lera was just transferred to an institution. We all know how horrible this is!! I am hoping to spread the word to get people to help donate to her Reeces Rainbow account. This is so urgent!! Everyday she is in that institution is a day too long!! Below is the link to their donation page. Thanks for any help you can give for Lera!!

Donate NOW!

Sick Again

2011-03-05T11:33:00.003-05:00

So Chloe's got bronchiolitis and has been sick again all week. She's been in pretty good spirits despite a temp of 101 and a nasty cough. Doc sent us for chest XRay on Thursday since he heard a crackle, but XRay was more consistent with bronchiolitis then pnuemonia, so that's good news. She's been fighting it pretty well and remained a happy camper up until the past two nights when she's been the most out of sorts we've seen her in a long time. But the good news is she woke up this morning seeming back to her old self. Hopefully we're on the upward trend now.

Here's what happens when you cough REALLY hard! Notice the red spot in her eye? It's not from her eye surgery, but is new from coughing! Poor baby!

Feeling better, but look at he right eye. :(

Dirty Little Secret

2011-03-04T13:08:00.001-05:00

I have a secret. It’s one I probably shouldn’t admit to, but admitting your problem is half the battle right? My secret is. . . I’m addicted to my kids. I know, that sounds totally corny. That’s not how I mean it. I mean I’m addicted to having kids. Not the physical birth part. Don’t get me wrong, I’ve had some GREAT birth experiences and there’s nothing like feeling your own baby move inside you, but that’s not what I’m addicted to either. I’ve been thinking a lot about this lately, because I’m often overwhelmed having three kids, yet here I am wanting MORE! Yes, it’s true, I want another one! (My mother AND my husband are gasping for air right now). So I’ve been pondering the reasons for why I might possibly want another one and I’ve come to the conclusion that I’m addicted to the love that I have and receive from my kids. . . from being a mother. Phew. I already feel the weight lifted off my shoulders. So what does this mean for me? Number 4, you’re probably wondering. . . I honestly don’t know what it means yet. I’ve just figured out what it is that I like/love/thrive on. It’s just nice to make a little sense out of this draw I have to MORE kids! And I have to think I’m not the only one out there!

Like Magic

2011-02-27T16:05:00.000-05:00

Chloe had her endocrinology appointment the other day. That’s the one where we talk about her thyroid – it’s really no big deal. Upon arrival in the quiet waiting room, it was clear Chloe was going to leave her mark. Waving, smiling and saying “hi”, the waiters casually raised their heads to catch a glimpse of the little noise maker. After checking in, we settled in for a long wait, me in a chair and her in the stroller. She was restless and wasn’t thrilled with having to wait, so I pulled out the ONLY toy I had with me, a dive fish for the pool (what can I say, you’d think with 3 kids I’d be a little more prepared). I proceeded to kiss her with the fish and she took it swimming it near me and making adorable cute sounds (okay, I’m a little biased). She soon became bored with this game and chucked the fish onto the floor. A sweet 14-year-old boy then retrieved the fish, much to her delight, and returned it to her. Ah ha! A new game. For probably 15 minutes she threw the fish on the floor and this amazing boy fetched it for her. Before I knew it the whole room, young and old with heads buried in magazines or phones, or their own conversations, was engaged not only with her, but with each other. Smiling, laughing, participating in the game. It was like magic. A magic I know other parents of kids with Down syndrome know all too well. Not to say all babies and toddlers aren’t cute, but there is SOMETHING about kids with Down syndrome that just tends to pull them in. . . like magic.

POOP!

2011-02-21T18:14:00.002-05:00

POOP! and MORE POOP! Yup, that's what we're dealing with here. LOTS of poop. Sorry to be so crude, but that's been my life since Chloe's eye surgery last Tuesday. Don't get me wrong, her recovery is going GREAT! But coincidentally she came down with an intestinal bug the same day. So she's been having 5-10 diarrhea's a day and has a nice bumpy rash all over her legs and arms, but has NOT had a fever and continues to eat, drink and most importantly, pee. The doc said he was "pleased" with her "story". Not of course that she's sick, but how well she's managing it. She's a trooper. Let's just hope it doesn't last the 2 weeks the doc said it could! I'm more then sick of changing diapers, clothes and doing laundry!!!!! It's exhausting, not to mention I'm feeling a little bit of cabin fever.

I'll try to post some pics and a more cheerful update soon. :)

Continued Recovery and a Bug?

2011-02-19T17:41:00.002-05:00

Chloe's eye surgery recovery seems to be progressing positively. We will go to her post-op appointment to get the official "read" on the success of the surgery on Tuesday. Her eyes look good to me! They're still pinkish-red in the corners and under the bottom lids, but they don't seem to be turning in anymore. yay! Despite how great she's doing with her recovery, she is having diarrhea again and a rash on her legs and now her arms. Some friends have suggested maybe it's Fifths Disease, but I don't want to bother the doc on the weekend, when she's generally fine. I'll call on Monday to touch base, but I'm assuming there is nothing we can do but wait this out. I'm just sick of changing complete blow-out messes (sorry for the graphic)! But she's eating and drinking and playing like everything is usual. More a nuisance than anything else.

Okay, just to prove to you how good she's feeling I've included a video below. Enjoy.

Make photo slide shows at www.OneTrueMedia.com

Surgery Sucess!!!

2011-02-15T15:36:00.005-05:00

Our day in pictures. . .

Happy Valentine's Day

2011-02-14T08:56:00.002-05:00

Adventures in Chloe

2011-02-08T18:30:00.002-05:00

Not feeling very good. . .

But not bad enough not to smile! :)

So it's been a busy day in Chloe-land. She's had a stomach bug since Sunday and it continues on today. It's honestly not too bad, just very messy diapers. As they say in the commercial, "what happens in diapers should stay in diapers!" This has NOT been the case (ewwwww). So there's been lots of laundry for mama! She's otherwise fine - no fever, no vomiting and before today, her appetite's been fine.

I got the call for her surgery today. Next Tuesday, February 15th. It'll be at the surgery center at our local hospital. I spent the day getting all our ducks in a row, so let's hope her belly cooperates and heals in time for surgery!!!! We'll take some positive mojo, thoughts and prayers focused on her recovering in time for surgery.

As if our day wasn't busy enough, while I was on the phone making arrangements for her surgery Chloe fell down (not even doing one of her stunts, I actually think she just tripped and fell!!!!) and BIT her tongue. We're talking massive blood and a major chomp! I think I handle these things pretty well usually, but this had me pretty shaken. It was lots of blood and raw meat. (double ewwww)

So it's been quite a day in the Adventures of Chloe. Let's hope tomorrow is nice and quiet and the rest of the week continues on that way (quiet, NOT like today). Stay tuned. . .

Circus Stunts and Waiting (Not So) Patiently

2011-02-07T18:56:00.000-05:00

So I thought I'd start out this post sharing you a little bit of Chloe's circus act! LOL Please ignore the incessant nagging of my son, and just for the record, we have since moved the table from behind the couch, thus thwarting her gymnastic-efforts. Someone suggested I enroll her in an official organized gymnastics class, at which point I chucked to myself! If you know anything about Chloe, you'll know she does things when SHE wants to do them. I can't even imagine her in an organized class. Ha ha! I might give it a try when she's a little bit older, but for now, she'll enjoying jumping and rolling on couch cushions!

Now for the serious stuff. No word on the eye surgery front. I did get a nice long message from the doc on Friday, saying, without saying, that he was frustrated with their decision and that he doesn't expect that she'll end up spending the night anyway. It was very aggravating to hear his frustration too, but it is what it is. Either way, I'll be happy to have it in the surgery center at the hospital because it's much closer to home and a place we are very familiar with. So I'll repost when we have a date. Hopefully I'll hear something tomorrow (I expected to hear something today, but didn't ARGH). I need to get my supports in place! Wish us luck!!!! ;)

Grrrr, Grrrr and more GRRRRRRRR!!!!!!

2011-02-03T14:59:00.003-05:00

So don't you HATE IT when you write up a full post, with links and everything, and you hit that "Publish" button and you get an error message only to discover your whole post has just been lost????? GRRRRRRRRRRRRR!!!!!!

So anyway, Chloe's eye surgery has been postponed from tomorrow because the anesthesiologists are worried about her having it done in an outpatient facility because she has sleep apnea. They feel it would be safer for her to have the surgery in a hospital setting, where she can be admitted overnight and observed. REALLY? You wait til the DAY BEFORE the time-sensitive surgery to determine this isn't a good idea. OBVIOUSLY I want what is best for Chloe, but we couldn't have figured this out a month ago??? Her surgery is supposed to be performed within four months of the initial turn, which would mean she needed the surgery in January. It's now the first week in February and it's not even scheduled. Grrrrr. GRRRRRR!!!! I'm giving the scheduler a few hours to reach the doc, but I'll be calling back this afternoon to see if they're making any progress. Both my mom and husband were off tomorrow and we had everyone's schedules organized. We've been planning (and mentally preparing) for this for over a month! So thoughts, prayers, mojo, etc. for a speedy resolution and so we can get Chloe the surgery she needs!

Anyway, I hate to complain, especially today. We've lost another warrior. Another friend in our Ds community. Her name is Lois, and at 3 years old, she lost her battle with leukemia. Leukemia is more common in kids with Ds, and generally they do pretty well with it, but this was a particularly difficult case and poor Lois lost her fight today. May she find peace. Prayers for her family, please, as they navigate a new world without her.

Circus Stunts and Surgery

2011-02-02T15:53:00.003-05:00

First things first, Chloe's having minor eye surgery this Friday to repair strabismis in both eyes (turning in). The surgery will be some time between 8 and 8:30 and should last about 50 minutes. Recovery is expected to be fairly easy with about 2 hours of crankiness related to the anesthesia and then possibly some itching at the incision sites in her eyes that night, but generally she should be up and running around within 6 hours. We expect it to be an uneventful day, but welcome thoughts and prayers. I'll post an update as soon as I can.

Now on to Chloe's latest "circus stunts". As you can see from the picture below she likes to perch herself on the arm on the couch. What the picture doesn't show is her lunging off onto the couch!!!! And as impressive as this whole balancing/daredevil act may be, it's nothing compared to when she climbs over the back of the couch onto a wicker table, STANDS up and JUMPS off onto the couch!!!! Lord help me!

Buried in Snow

2011-01-31T14:32:00.005-05:00

Here we are, with snow up to our eyeballs and more snow on the way!!! Hard to believe how snowy it's been this winter in the Northeast. We're setting records left and right!

Flattery Will Get You EVERYWHERE!

2011-01-29T22:04:00.002-05:00

I recently had someone tell me that she wishes she could be a parent like me. At first I thought she meant a stay-at-home mom, but then she went on to explain how she never sees me yell at my kids (okay, truth be told, she's just never SEEN me yell at my kids LOL) and that when she thinks about her own kids she reminds herself of me with my three kids. I was so touched and flattered! I mean, who cares if it's not completely accurate?! Who cares if sometimes I DO yell at my kids? Because the truth is I work very hard every day to be the kind of mom I want to be. I definitely don't consider myself there, but I think recognizing it and working on it is half the battle. So even though my BFF laughed (yes LAUGHED) when I told her the story, I'm still flattered by the compliment that someone doesn't think I'm a crazy mom, but one to aspire to. I may know the truth, and will keep myself grounded in the reality of my parenting, but I'll take the praise too. :)

Chloe's Tricks!

2011-01-16T21:18:00.002-05:00

Chloe's keeping us on our toes!

In case you're wondering, she stands in her swing and swings it!

Walking

2011-01-07T10:59:00.001-05:00

More Chloe walking. It's short but sweet. Hope you enjoy seeing her walk as much as I do!!!

We Have a DATE!

2011-01-03T13:15:00.002-05:00

Friday, February 4th is the BIG DAY! That's when Chloe will have her eye surgery. It shouldn't be a big deal, but sugery is always a least a little nerve-racking. I'm sure she'll do fine. . . it's mommy and daddy you have to worry about! LOL

Other than that, things have been pretty quiet around here. We had an absolutely wonderful break with my husband home. We spent lots of time with family and friends and were able to enjoy some nice family time before heading back into the "real world" this week.

Chloe's been a busy girl learning to walk! She's all over the place now. it's so fun to watch her go. Below is a video of Chloe playing in her peek-a-boo chair. It's pretty cute near the end. :)

Ortho Visit

2010-12-22T16:20:00.003-05:00

Chloe's orthopedic consult went great today. They took an x-ray of her hips and they look fine. Also, he did NOT see any leg length difference as his therapist thought. She does have internal tibial torsion (where the tibia bone, one of the lower leg bones, rotates in causing "in-toeing"). You can see it best when she's sitting in my lap with her knees straight on - her feet turn WAY in. My son had it and outgrew it no problem, but because Chloe has such lax joints and ligaments we'll watch it to make sure it doesn't negatively impact her walking and cause her to trip. The only correction for it is surgery, but at this point we're just going to watch it. We don't have to return for another few years. Yay! I couldn't handle another surgery right now. One thing at a time, please. ;)

Okay, Sadie's crying and Xander's yelling at her and my niece Macy is trying to negotiate LOL. Off I go. . .

Another Surgery for Chloe

2010-12-21T17:40:00.004-05:00

We saw the eye doc today and they should be calling me tomorrow to schedule eye surgery for Chloe some Friday in January. He said it's really not a big deal for the children (haa haa - I love how he always says that "it's not a big deal FOR THE CHILDREN". As if the parents are a whole other deal!)

Tomorrow we go to orthopedics to check her out and get a baseline. She has signficant in-toeing of her left foot and her PT thinks her left leg is shorter then her right. We'll see what they think tomorrow. I don't know why I'm nervous about this appointment. I was nervous today too. I know the surgery is no big deal, but I'm feeling some anxiety about it. I'm sure everything will work out fine. Just another surgery to put under her belt. She's my little fighter.

Will keep you posted on tomorrow's appointment. :) If you haven't seen the video of her walking and talking, check out the previous post here.

Fun with Chloe!

2010-12-21T10:20:00.001-05:00

Photo and video editing at www.OneTrueMedia.com

Me and My BIG Mouth!

2010-12-13T19:16:00.003-05:00

Yup, me and my big mouth announced that Chloe's been doing GREAT wearing her eye patches and WHAM! That's the end of that!!!!

Yup, she threw it on the floor!

BUT the good news is, she's feeding herself!!!!!!!!!!!!!!!!!!!!

So life is still good! :)

Yes indeed, life is good.

Chloe update

2010-12-07T13:37:00.003-05:00

Sorry it's been awhile since I've updated. Getting busy with the holiday season. Chloe's had a nasty cold for about 2 weeks now. She's been in great spirits and even kept her appetite up (usually the first thing to go with her), aside from not being able to drink because of her stuffy nose! Last week Xander and Stacey were both diagnosed with strep throat and even though toddlers are much less likely to get strep, I thought I should take her in yesterday since she just didn't seem to be kicking this cold. I wanted to make sure nothing else was going on. Sure enough, doc took one look at her throat and said "I'm swabbing it!". He still didn't think it was strep because other than the way it looked, she wasn't showing symptoms of strep. But the 5 minute test came back positive, so we're treating her with antibiotics now. Hopefully it'll kill any sinus infection she might have too. So now 3 out of 5 of us are on antibiotics! I'm happy to say, it's been a mild infection for each of them. I'm just so thankful that Chloe's been able to fight this off like she has, almost like nothing's going on. So many of our Ds kiddos are sick right now. I mean like REALLY sick. I read on Facebook and other blogs about ER trips and admissions and even life support, and I am incredibly thankful that Chloe has remained so strong. My thoughts and prayers are with those kids and family that are not so lucky.

On a more upbeat note, Chloe's doing GREAT with her eye patches! She wears them everyday without fail. She's so cute with them on too. She only has to wear one for an hour each day, so it's really no big deal. The glasses on the other hand, are a completely different deal! Too bad she doesn't have to wear the patches all the time and the glasses for only an hour! Oh well!

Happy Holidays

2010-12-01T17:55:00.000-05:00

Happy Thanksgiving from our family to yours! Enjoy the holiday season!

Eye Patch and Glasses

2010-11-21T13:05:00.002-05:00

Chloe is doing pretty well with her eye patching. She has to wear them on alternating eyes for 1 hour each day. First day she ripped it off several times and I had to stay right on top of her. Second day I missed (oops). Third day was much better and the fourth day was great!!!! So she seems to be getting used to it. Hopefully by wearing the patches her eyes will strengthen possibly eliminating the need for surgery in January. Then there's the glasses. That's a completely different story. She will put them on, but won't leave them on. We work with her a little each day to get her to wear them. We're taking baby steps, although she only needs them for a month, so we don't have too much time to get her to wear them!!!! They have prisms on them to help her see better since her eyes don't align, but it could also potentially make her turn worse, which if she needs surgery is a GOOD thing because they want the turn to be the worst it can be so that they correct the whole thing and decrease the chance of repeat surgery.

Finally, I've put Chloe back in her leg braces. We'll wait to see if she needs new ones, but for now I'm going to continue to use the ones she has. Why not, right? Better then using nothing. She is walking ALL OVER the house now with her push toys. She uses that mode of transportation more then crawling now. Yay Chloe! Hopefully soon she'll drop the "walker" and do some independant walking.

Rolling with the Punches

2010-11-16T13:50:00.003-05:00

Chloe continues to keep me busy with the "little things" going on in her life! First things first - her g-tube site closed up nicely after a brief, minor infection after the closure surgery. A little oral antibiotics (and lots of positive thoughts and prayers) and she was good to go! At her post-op appointment the other day the doc was talking to me about what it would look like once the scab fell off and Chloe must have heard her because she popped that little sucker right off! (Sorry, I know, GROSS!) But that gave the doc a chance to look at it and explain to me what we were looking at (a little pink skin with one tiny little opening remaining - which I believe has even closed already after only a day). Chloe is also continuing to eat like a CHAMP. I can't hardly believe how much she's improved. Oh, and we ran into one of her old cardiac docs (he was a Fellow) from when she was mega sick girl and he was SOOOOO impressed. He couldn't get over how great she looks even with a terrible cold (yes, she has a terrible cold!). He said it was such a moral boost for him to see her looking so good. :) You go on about yourself big girl!!!!

Okay, onto the latest drama. First, her foot and now feet are turning in fairly significantly. We stopped using her braces because she was looking so good, but now her feet are turning in so much that her therapist is concerned it's going to affect her bone growth. So back to braces. Booo. I have to be honest, I hate them. I mean, I don't really HATE them, but the pressure to remember to put them on and take them off for varying times each day is a lot to keep up with. I know, that sounds totally LAME. But somethings it's just hard to be consistent and that's what she needs! And while I'm complaining, she needs new ones, so that's MORE MONEY we have to spend (we had a huge deductible for her surgery so we're also dealing with that - argh). Okay, that's it for complaining because putting it all in perspective things could be much worse and the honest truth is she truly "has her health". So what are some stupid braces. They're a great excuse to wear those adorable leg warmers Baby Legs! LOL

Finally, we had Chloe's eye appointment today. Her eye turn has indeed gotten worse and she will most likely require surgery within 4 months from when it started. Soooo, we'll see the doc again in 4 weeks, but in the meantime he wants us to try #1) patching her eyes alternating days for 1 hour a day and #2) getting her to wear prism glasses. (more money, more money, more money - hee hee, just kidding). So she's getting these adorable little glasses, just like Sweet Pea has and will likely rip them off her face every chance she can, but we're going to give it our best effort. It's one month and hopefully by then we'll see some improvement. If not we can expect surgery in early January.

So I think that about does it. She's got this nasty cold which I can't believe she's fought like she has. No fever. No rashes. No drama. Just a REALLY nasty nose and a little bit of a cough. Hey we can handle that and everything else. I was thinking to myself how different things are with Ms. Chloe. Everything we've already been through with her. When these "little things" come up it's like no big deal, but I know if ANY of these things had happened with my older two kids it would have been high drama! I would have been so scared and freaked out. We've certainly learned to roll with the punches!

Yes, We Actually DO Play in the Leaves in the NorthEast

2010-11-13T17:19:00.007-05:00

My friend Holly recently asked me if we actually pile up the leaves in the fall and jump and play in them. We sure do!!! It was in the 60's today and GORGEOUS! The kids, parents and dog all had a blast! Hope you enjoy the pics! (Chloe's got a bad cold, but still thoroughly enjoyed herself!)

Like Old Friends

2010-11-05T18:12:00.004-04:00

Ya know when you meet someone and it's like you've been friends forever? It's just natural and you just connect? Well, I met the coolest chick today! Her name is Holly and she resides over at Holly's House. If you haven't checked out her blog yet, I highly recommend you do! She leaves me in stitches every time! She's real life. Anyway, we met via our blogs and have become virtual friends and today we finally got to meet in person for the first time. She had her 2 beautiful girls with her and I had such a wonderful time getting to know all 3 of them. Unfortunately I didn't get any pictures of her older daughter (that were in focus anyway).

G-tube Site Update

2010-11-01T16:45:00.002-04:00

Chloe visited her pediatrician today and he removed the stitch from her closed g-tube site. It was buried under scab so it wasn't very pleasant for her, but now it's done and if the stitch was causing some of the irritation, hopefully that'll resolve now. She's also started an antibiotic because her doc thinks she has a superficial infection. We expect the redness to clear up in a few days with the antibiotic, but we marked where the redness is so we can tell if it spreads. I'll obviously be watching her closely. Thanks to everyone for the thoughts and prayers. I think she's going to be just fine. :)

Halloween Pics as Promised!

2010-10-31T22:26:00.003-04:00

That's our Super Girl!!!

Pizza face!

A Little Something Extra

2010-10-31T16:33:00.005-04:00

It appears as though sweet Chloe might have a little complication from her surgery. As it looks now, we think her g-tube site is now infected. I've spoken to the on-call surgeon twice this weekend and although it's red and swollen, in the absence of fever, pain and/or discharge, he thinks it can wait until tomorrow to have her seen. Considering it's Sunday AND Halloween I'm trying to avoid an unnecessary trip to the ER. Here's a pic of her site (sorry for the graffic nature of the picture). I'll post Halloween pics later. . .

Surgery is a SUCESS!!!!

2010-10-27T09:55:00.006-04:00

Chloe's surgery was a success! The hardest part was getting her IV line in. Thank goodness she was asleep for it!!! She is nice and bruised up, but aside from that and the bandage covering her "wound", you'd never even know she had surgery 2 days ago! I, unfortunately, got the stomach bug and had to go home, leaving Nana to care for Chloe overnight. She did a GREAT job! The big kids were home with Grandma Linda in from Montanta and cousin Miah in from North Dakota. They were having a great time even though they were worried. And although it didn't go quite as planned, it all worked out in the end, and the most important thing is that Chloe came through it all with flying colors. Here are some pre-surgery and post-surgery pics!

Surgery a "go-go"

2010-10-21T08:53:00.002-04:00

Assuming our little peanut stays healthy, she will have her g-tube closure procedure on Monday, 10/25. We won't know the time until tomorrow afternoon. Keep her in your thoughts and prayers. The site has been fairly dry, with only occasional "oozing" so I thought they might not want to close it, but they do, so that's good. It means we'll finally be able to put this behind us and they'll get rid of the extra skin that grew that I'm sure she would hate as she got older (besides, she plays with it!). They'll also clean out her ears and check to see if it looks like she needs tubes. One stop shopping!

I'll post the time when we have it so all positive thoughts and prayers can be focused around that time. Thanks!

Chloe's Crew at the Buddy Walk - in pictures

2010-10-19T08:58:00.005-04:00

We have a DATE for surgery

2010-10-17T16:57:00.003-04:00

October 25th is the date for surgery to close Chloe's g-tube site. She will have her g-tube hole closed, the extra skin removed and her ears cleaned and checked more closely for fluid (and get tubes if needed). This is all assuming she's stays cold-free (I think I saw a runny nose today - aaaaarrrrgggghhhh!!!) So let's hope she stays healthy so we can get this done. AND Stacey's mom and niece Miah are coming so it would be great to get it done while they're here to help. So some finger crossing would be great!

Also, yesterday was our local buddy walk. (Pictures to follow.) Chloe's Crew was the 5th highest fundraiser with over $6500 in donations!!!! We want to thank everyone who participated - everyone who walked, donated and made the walk happen. Although it was freezing with the whipping wind, we had a wonderful day and were incredibly touched by all those that chose to support Chloe's Crew.

A Fitting Tribute to a Monumental Anniversary

2010-10-15T16:00:00.003-04:00

I thought it fitting to re-post Chloe's video about her first year on today, the anniversary of her heart surgery. It was 2 years ago today that Chloe was literally saved from death. It is a miracle day. Hope you enjoy a little walk down memory lane, including her surgery.

Photo and video editing at www.OneTrueMedia.com

Chloe's First Steps! Wooo Hoooo!!!

2010-10-10T22:11:00.001-04:00

Don't forget to pause the music at the bottom of the blog page. :)

Make an on-line slide show at www.OneTrueMedia.com

Sweating it Out - Lab Results

2010-10-08T14:32:00.004-04:00

So the doc calls and leaves me a message saying to call him back that he just wants to touch base with me briefly on Chloe's labs. He says it's okay to have him interrupted. So I call back and he's finishing up with a client so I agree that he can call me back. I KNOW that there is NOTHING wrong, but yet I sit here sweating. The receptionist wasn't even aware he called me, so I KNOW it's nothing serious, but yet I sweat. You know that feeling? That feeling that everything MUST be fine. That you're simply having some crazy reaction. Some sweaty, I'm going to be so relieved when I talk to him and he tells me all is well, reaction. The I know nothings wrong, but I need to HEAR it so I can STOP SWEATING reaction! Well, he FINALLY called me back several hours (and an Ativan) later to let me know that the labs all looked good (see, I KNEW they'd be okay), but that her TSH (Thyroid Stimulating Hormone) was a little elevated (meaning she's a LITTLE underactive). It's NO big deal, but could explain the "unexplained" fatigue. We'll need to wait to hear from her endocrinologist (GREAT that usually only takes about a week!). But the good news here is NO scary thing lurking in her blood. She's all good minus a little thyroid tweeking that needs to be done (oh, and yes, surgery on her g-tube and possibly tubes in her ears and possibly surgery on her eye. . . but that's NOTHING compared to what my crazy mind was conjuring!) It's all good!!!! :)

From the words of a big brother and sister

2010-10-07T21:19:00.003-04:00

"Moving was hard, but it was really hard for Chloe in her first 9-weeks-of life. I only hope the best for all the kids with Down syndrome. Especially those that are new-to-life." by Xander

"I love Chloe. I will kiss Chloe. Her g-tube fell out. That's the end." by Sadie

Plum Tuckered Out

2010-10-07T14:48:00.002-04:00

This is Chloe after her appointment with surgery today. So we have a plan. . . sort of. It involves some waiting and some what ifs and some more waiting, but still, there's a plan.

Since the g-tube site is not really leaking too much we have the choice of waiting awhile longer to see if it will close on its own, or going ahead. I'd just assume get this taken care of so we can get on with life as usual. But she's just had a cold, so we have to wait at least 2 weeks since her cold to make sure she's good to go. She had labs done today (hence the adorable doll in Chloe's sleeping arms given to her by the phlebotomist) so we also have to wait for those to come back since she's been having fatigue. The surgeon also wants to talk to Chloe's cardiologist to make sure she doesn't have any objections (which we doubt). Then the last piece to this ever so complicated puzzle, is ENT. As I said yesterday the doc wants to get in while she's under and clean things out and investigate further whether or not she'll need tubes. He's also getting back to me on whether or not we need a sedated hearing test, which would complicate matters (scheduling anyway) even further. But I have no worries. I expect it to all fall into place.

The procedure takes about 30 minutes, followed by about 10 minutes for the ENT and then another 45 minutes for the sedated hearing test, if that's necessary. So about and hour and a half total if they do everything. I'm not even going to worry about her eyes right now. We'll deal with that in November. I'm not sure it's the type of thing they'd do surgery on soon or it's really something more down the line. And I think they do it right in the docs office. Should be no big deal.

That about does it for the update. Hopefully I won't have much more to report over the next week or so except that her blood work came back great and that we all got coordinated and have a surgery date! Otherwise I expect things to be quiet!

ENT Update

2010-10-06T15:34:00.006-04:00

Just wanted to show off this adorable outfit my aunts got for her that she FINALLY grew into. Isn't it just the cutest???!!!

Now for the update. We saw her ENT yesterday and he was actually pleased with what he saw. He really didn't see significant fluid when he looked and he's still inclined to wait on putting tubes in. He doesn't feel that the tests that show the presence of fluid are that accurate in children with Down syndrome because of the make-up of their ears, so he prefers that we wait. He DID, however, want to "get in on it" if surgery is going to be putting her under for the g-tube closure. At the very least he would like to get in there and clean them out and get a good look at them and then if he feels it is necessary at the time, put tubes in. The other question on the table is if she IS put under, should the newborn screening test be done because a) we're not sure if it was done originally and b) they may want new results and if she's going to be having a procedure done, now may be the time to do it. Sooooo, we go to surgery tomorrow and find out if they are going to indeed schedule a closure (which I'm not sure about since she hasn't leaked for several days now) and then we shoot for one-stop-shopping and try to get all this done at once! I'm feeling a little like there are a lot of balls in the air right now, but everything DOES seem to be falling into place.

Oh, and I finally talked to her endorinologist who said she doesn't think she needs to be switched off the generic (should have argued for it, but didn't) and agreed we could order more labs. So after her surgery appointment tomorrow we will go for a blood draw for the thyroid screen and CBC. I expect everything to come back normal as the fatigue seems to be going away. Maybe she just had a virus, or as my mom suggested, is sensing all of our stress in the house (having just moved and not being able to sell our old house, etc., etc.). I also got her an appointment with her eye doc as her eye (and maybe eyeS) is turning in more. Now I'm sorta wondering if they can do THAT while she's under too. . . hmmmmm.

okay, I'll try to update tomorrow.

Feeling a Little Overwhelmed

2010-10-04T14:00:00.002-04:00

I think I'm out of practice. All these doctor appointments and phone calls and coordination of blood draws. I'm not used to Chloe requiring all this stuff lately. She's been so . . . well. . . "healthy" lately. Not that she's exactly "unhealthy" now, but she's certainly got a lot going on. Tuesday we see her ENT to determine if she will finally require tubes. Thursday we see surgery for a pre-op appointment to close her g-tube (yes, it's been leaking again). I also had to schedule with her eye doc because her eye is turning in more then it was before. And, at some point I have to get a blood draw since she's been having fatigue (which I suppose I'll do on Thursday just in case surgery needs any pre-op blood too). Okay, I think that should do it. I guess it's not THAT overwhelming. Just gotta keep it all organized in my head and on paper. I know, this too shall pass and then we'll be back to "normal" (whatever the hell normal is!). Wish us luck with all our appointments and HOPEFULLY if she needs tubes AND the g-tube closure, they can coordinate and do it together. Stay tuned. . .

The Never Ending Story

2010-10-03T13:07:00.003-04:00

Chloe's g-tube continues to be a never-ending story around this house! It goes DAYS without anything and then it'll leak again. So I'm putting in a call to surgery tomorrow to let them know it's still leaking. It's weird how it'll go for days with nothing and then it'll start leaking again. We'll see what they have to say tomorrow.

The "bowel" issues seem to have resolved themselves as soon as we stopped giving her the recalled formula! Coincidence? I think NOT! Whatever, I'm just glad she's feeling better and eating better. I know she was starting to lose a little weight.

As for the fatigue, I never heard back from her endocrinologist re: her thyroid. I'll put in another call on Monday. I want her switched off the generic and I want a CBC done.

We see her ENT (Ear, Nose and Throat) on Tuesday so we'll hopefully know the story about whether or not she needs tubes. I think this week will lead to a lot of answers. Her g-tube, her ears and we'll start to get to to the bottom of her fatigue. She's been a busy little girl, hasn't she?!

Time for a Facelift! And a good ol Chloe update.

2010-09-29T20:16:00.005-04:00

Okay, so I finally figured out how to change up my blog. Rebecca had done a beautiful job on it. It was just time for a change. Besides, the picture of Chloe was awfully outdated. So I changed things around including the picture, but couldn't figure out how to put the picture in the title line without it being HUGE! If anyone knows how to fix it, let me know. I also need a new button, if anyone knows how to make them and could let me know, that would be great!

Chloe's little stoma nub is healing up. It's red either because it has a little leakage (and I mean a LITTLE) or because she plays with it. I can't tell if it's bothering her or just something new to fiddle with.

Chloe's also been having loose stools and diarrhea and it turns out her formula has been recalled because it has "bug particles" in it. Can you say NASTY????? They SAY it's not enough to be a health hazard, but could cause some digestive upset and cause the child not to want to eat. Soooo, what do ya think????? We're certainly not giving her anymore! And I'm calling the pedi tomorrow!

The pedi appointment went fine on Monday. She was of course full of zest and looked great, so the doc just had to trust me. I put in a call to her endocrinologist to see if it's possible that her thyroid is causing the fatigue, even though she's supposed to be regulated. I'm wondering if it could be the generic she's on. My endo doesn't like me taking a generic because they can vary so much. But still no word from her endocrine. Hopefully I'll hear back tomorrow. I also want to know when her next blood draw is due because our pedi wants her annual cbc done. I want it done too. He doesn't think it's her heart, because she's not showing other symptoms, like sweating. It could be sleep apnea, but I think we'll hold off on a sleep study to get lab results first. If in a few weeks it's still going on then we'll probably pursue a sleep study.

I started letting my imagination get the worst of me today and really started to worry about the what-ifs. And with all the Ds kids out there fighting leukemia, I just couldn't get it out of my mind. I know I'm being paranoid and over-reacting and I never try to think about the what-if's but rather focus just on what we know now. I guess it all just got away from me today. All my worry just came crashing down around me. But don't worry, a nice warm shower, a tea party with my 5-year-old and some good ol' girlie nail painting brought me back to the here and now. I'm feeling better now.

Time for some More Pics!

2010-09-28T11:04:00.005-04:00

Sadie taking care of Chloe when she was sick.

Xander at our town Duck Race fundraiser (sitting in the ambulance).

Sitting on the ladder truck.

The kids - I know, Chloe looks miserable. . . she wasn't.

Chloe - sittin' pretty.

GREAT NEWS and Gut Feelings

2010-09-27T10:57:00.002-04:00

We'll start with the GREAT NEWS (or potentially great news anyway). Chloe's g-tube site seemed to leak MORE after being cauterized last monday so I put in a call to surgery and we were scheduled for a pre-op appointment today. Well, yesterday and today it seems as if it actually closed up. There has been very little to no leaking. So they canceled our appointment and we get to watch it for a few days. My gut says this is it, that it's going to close and there will be no surgery. That's all good (make it GREAT) news.

Now for my other "gut feeling". Chloe just doesn't seem right. She's been tired for about 2-3 weeks now. Granted, she's had a cold for the last week, so she's been visibly TIRED and cranky, but before that even, she just hasn't seemed like her full energetic self. Now maybe I'm just being paranoid. Maybe it's just a growth spurt or something. But I can't help worrying that something else bigger is going on. Something that's wearing her down. We go in for a quick 15 minute appointment today with the doc. Hopefully he'll have some ideas. I want to get to the bottom of this. It's nothing startling, just this subtle sense that she's tiring out more then usual (and it's not in my imagination because her therapists and friends have commented on it as well). I'm sure we'll cover the gammat of possibilities - sleep disorder, thyroid, heart. . . not sure what else. I'll keep ya posted. . .

I May Have Spoke too Soon

2010-09-24T11:00:00.005-04:00

Chloe's g-tube leaked a bunch yesterday so I MAY have spoken too soon about her not needing a surgery to close it. We knew there was a slim chance, but we were hopeful. Then yesterday when I went to change her diaper her bandage was SOAKED. Of course the surgeon is out of town and the nurse doesn't work in the office on Fridays so I have to wait until Monday to find out for sure what the plan is. Whatever the deal is we'll just go with the flow. Obviously we don't want surgery, but the good news is they can take care of the extra skin that grew around the site if she does need it to be closed. Either way, we know she'll be good. :)

Her cold seems better today. No fever. But she's having some diarrhea and not really eating (OF COURSE, because her g-tube is gone!!!!) But she's happy and playing and you'd never know by looking at her that she had a bug. Still feeling thankful today. . .

UPDATE: Spoke to on-call surgeon. We are scheduled for a pre-op appointment with Chloe's surgeon for Monday. Will keep you posted. . .

Thankful for the common cold????

2010-09-23T13:14:00.003-04:00

You bet I am! As I've been online today reading about Chloe's little friends in cyber-world who are fighting for their lives against leukemia I indeed find myself grateful that Chloe can and will manage her cold. 101.6 today and snuggling with me on the couch actually reminds me of how lucky we are that Chloe can now have an everyday cold and NOT have to worry about fighting for her life. My heart is heavy today thinking of my dear friends out there who are not so lucky. Sweet Ella and Lois I will be sending extra positive energy your way today and the many days to come. Although we have not met them in person we are bonded by a special little extra chromosome and for that I am also thankful. Say a prayer for their families and maybe a little extra prayer for Chloe.

BTW, just an update. Spoke to the pedi this morning and we're taking her off the Reglan and seeing how she does. Wish us luck! :)

Surgery Update

2010-09-21T14:08:00.003-04:00

So if you've been following along you know that Chloe's G-tube fell out on Friday causing us to go to the Emergency Department because I didn't know when it fell out and if it's been out too long a surgeon might have to put it back in (a G-tube is a small little tube that goes into Chloe's stomach so that we can put liquid directly into her stomach. This was necessary when Chloe was considered "failure to thrive" and was too weak to eat enough to sustain herself. She's had it for a year and a half). It's fallen out before and I've been able to put it back in, but since I had no idea how long it had been out surgery asked that we come in to have a surgeon look at it. So we loaded up and drove to the hospital and they decided WITHOUT looking at it to leave the g-tube out because she hadn't used it in 2 1/2 months!!! (Don't get me started on THAT whole process, considering a surgeon never came down and even looked at it, meaning we drove in there and have to pay a $150 copay for something they could have decided over the phone! ARGH.) Anyhow, we DID get scheduled to see Chloe's surgeon on Monday (for another $40 co-pay - couldn't they have coordinated that better????) to make a plan for closure of the g-tube site.

Apparently, about 90% of the sites will close on their own within a week. For those that don't close a surgical procedure is required. The GREAT news is that the surgeon is pretty confident that it will close on it's own because it has already closed a significant amount. The only downside is that she has some extra tissue that grew around the site that won't be removed now so Chloe will be left with not only a scar, but a little lump of skin on her belly. I'm sure she'll HATE it when she gets older, but I guess we'll just have to address that with a plastic surgeon if and when she gets older and it becomes and issue (not "if and when" she gets older, but "if and when" it becomes an issue!!! LOL). But obviously the key is that she won't need a surgery! Whooo hoooo!

The other issue that the surgeon briefly addressed with me was the use of Reglan. She really felt that it was a nasty drug and not worth being on anymore since Chloe's not even taking an antacid anymore. We discussed the potential for serious and permanent side-effects. It just sounds to me like it's time to get off that stuff. (She takes it for stomach emptying problems, but I think that she's probably grown out of that. Seems to make sense to me that we at least try her off of it!!!!) I've heard a lot of parents won't even let their kids go on it, so I feel a little guilty for having her on it for so long without knowing more about it, but not much I can do about it now other then get her off of it.

Chloe has seemed a little 'tired' lately. She's not necessarily sleeping more, just seems a little droopy. Her therapists and friends have also recognized this in her. I think it'll be good to eliminate one drug (then she'll just be left with her heart med and her thyroid med) and then we can evaluate what might be causing that.

Finally a little bit of a funny story - when we were in the ED for her g-tube they wanted to make sure everything was "working" okay - in other words, she could drink something without getting sick. So I gave her some juice and before you know it, it was leaking out of her g-tube hole!!! So there I was giving her juice and it was like a cartoon when the character gets shot and then they drink something and the liquid comes out the hole!!!! I know, kinda gross, but you have to admit, at least a little funny! LOL

FIRST STEP

2010-09-18T18:44:00.003-04:00

Just had to post a picture of Chloe's G-tube - her FINAL G-tube and our parking pass from our trip to the Emergency Department. :)

And now for some more BIG NEWS!!! Chloe took her first step today at our good friends Christina, Doug and Rory's welcome home and 2nd birthday party. It was soooo exciting and I was thrilled to have such special friends to share this momentous occasion with. Too bad daddy wasn't there to see it! And of course too bad I didn't get it on video! She just stood up in the middle of the yard and then took a step. Go Chloe!

Keeping Me on My Toes!

2010-09-17T15:42:00.003-04:00

I went to change Chloe this morning and when I lifted up her PJ shirt I found her G-Tube deflated, just lying on her belly (ON, not IN!). Since I didn't know how long it had been out I called Pedi Surgery to see if I needed to come in or not and indeed, they wanted me to make the trek to the emergency department so a surgeon could look at it. Well, after driving all the way there no one from surgery even came to look at it because since she hadn't used it for 2 1/2 months they decided to leave it out!!!! We will see her surgeon on Monday. The plan is to let it close on its own. If it doesn't close after a week, then they will schedule a procedure to close it up. Too bad we couldn't determine that over the phone, but at least it's all good! It's got a bandage on it for the "oozing" of stomach contents which I need to stay on top of and change frequently, but I can handle that. What a big girl! No more g-tube (okay, can I confess I'm a little nervous to have lost the safety net!!! I know, she'll do great, and she's ready, but there was something comforting about keeping it in for 6 months after she stopped using it - that was the original plan). I guess when Chloe decides she's ready, that's it!

Below is a pic of her sitting in her stroller in the ED. The resident that treated her was an intern when Chloe was first admitted 2 years ago. She was THRILLED to see Chloe doing so well. :)

Say What?

2010-09-16T15:14:00.004-04:00

Well, Chloe had a hearing test today. It was a follow-up to a test she had several months back that showed she had some mild hearing loss likely related to fluid. The repeat test today was scheduled so that it would be during the time of year least likely to have fluid. She has been free of colds and runny noses and hasn't shown signs of any ear infections, however she did still test with a mild loss. We are scheduled for an ENT appointment the first week in October (the appointments were originally scheduled back-to-back at the same place so we could get immediate feedback, but they lost an audiologist and had to move our appointments around, so now we have to wait. Shucks.) So the big question is whether or not they'll recommend tubes. I wasn't surprised because of the previous test, but it's been a busy few weeks. Her eye is turning in, her foot is turning in and now hearing loss. All pretty minor, but things we need to address. Let's hope this is the worst of it. We can deal with this stuff!

And for some good news, Sadie had a hearing test Tuesday and passed with flying colors. YAY Sadie!

PT progression

2010-09-09T18:55:00.003-04:00

Chloe's been doing great with her PT lately. I've been very impressed with her standing (she stands up in the middle of the room for about 10 seconds) and walking with a push toy or holding hands. She's also been playing in squatting and practicing the exercises the PT gives her by setting up a stool all by herself and going from sitting to standing up against a wall and back to sitting again over and over. I couldn't wait to get her to PT today to show off her skills, knowing full well she probably wouldn't perform. I was pleasantly surprised however that she did MOST of her new budding skills for her PT. She was pleased! :)

Unfortunately her great work was a little over-shadowed by what we both noticed was a signficiant turning in of her left foot! Argh. First her right eye and now her left leg? She's going to be going in circles! LOL (okay, maybe that was inappropriate). We're going to watch it carefully over the next few weeks. PT thinks it's most likely muscle weakness as opposed to bone (good news), but she'll make a referral if she has any question. Chloe's never seen an orthopedist so now may just be the time.

On a side note, I think I get the dumb mother of the year award. Oh how I wish we had this on video! I managed to smash my chin on a table as I was diving into a my hiding place while playing hide-n-seek with my 5 year old, biting both insides of my cheeks and tongue, and jamming my whole jaw up into my head and ears. OUCH! I'm super sore, but okay! Thank goodness!

Labor Day Weekend and Eye Doc

2010-09-07T14:01:00.004-04:00

Well, before I give the weekend review in pictures I just thought I'd update Chloe's eye appointment. There was good news and bad news. Okay, not even "bad news", but something we have to watch. The good news is she doesn't need glasses! YAY! Her eye sight is great. Right on. The problem is one of her eyes turns in. It doesn't do it on it's own, just when the doc tests her. We have to watch it and return in 4 months. Because it's present at 2 years of age and because she does NOT have nearsightedness, it is not something that would be treated with glasses, but rather surgery. It's supposedly an easy procedure that the kids quite well with (notice he said "the kids" - LOL - said nothing about the parents!) So my guess is she'll need surgery for it eventually, it's just when. But she's amazed us before so I'll worry about it when the time comes.

Chloe managed to get herself wedged in between the couch and table while the rest of us were watching Camp Rock 2. Earlier that evening Sadie called out to me "MOM! Chloe's sitting in the dryer!" Sadie had opened the laundry room door and Chloe had crawled in the front loader, turned herself around and was sitting in there druming away with chopsticks. It would have made quite a picture if I hadn't been so horrified that she was sitting in the dryer!!!!!!!!!!!!

Sadie sharing some Italian Ice with Chloe at the Taste of the Shoreline in Guilford.

Sadie and Xander all alone in the bounce house.

Chloe watches the action with Nana.

Bouncing together.

Chloe at the beach.

Mommy and Chloe enjoying a beautiful afternoon at the beach.

It was a wonderful weekend.

Do's and Don'ts When going to an Air Show

2010-09-06T12:34:00.002-04:00

DO get a babysitter for the baby/toddler! 8 hours in the hot sun and LOUD airplanes is not a great fit for a baby/toddler!

DON'T forget to administer the meds that you so carefully packed!

DO bring your own water as the tens of thousands of people make for LONG lines and eventually they WILL run out of water!

DON'T follow the traffic thinking they know where they're going! Stop and Ask!

DO bring sound-canceling headphones for your sensory-sensitive 9-year-old and 5-year-old.

DO bring and extra SD card for the 100's of pictures your husband and son will take!

DON'T forget to bring lots of sunscreen!

DO realize that 8 hours in the beating sun is long for anyone!!!

BUT DO go because it will be one of those days that you and your children will remember forever!!! TRULY AMAZING!!!!

We saw the Blue Angels and a whole days worth of amazing acts! It was truly a once in a life time adventure. It was well worth the 3 hours drive and long day.

FIRST DAY SUCCESS!!!

2010-09-04T15:50:00.003-04:00

Xander and Sadie ready for school. Xander goes full day to 4th grade and Sadie is in afternoon Kindergarten so she was just posing with Xander. ;)

Xander on the bus! He was a walker in our old town.

Sadie ready for Kindergarten and her first ride on the bus!!!! Mommy was VERY nervous! She was all smiles as she got on the bus and headed off to school. (Mommy was a wreck!)

Chloe waiting for her brother and sister to get home!

Home at last! Mommy and Chloe were soooo happy to see them!!!!

Well, the first day went off without a hitch (other then a late bus, but that's to be expected). Hope you enjoyed the pics!!!

Big Day Tomorrow

2010-09-01T21:27:00.002-04:00

So tomorrow is the start of school for my 2 "big" kids. LOL. Who'd of ever thought I'd think of a Kindergartner as a "big" kid. But Sadie is and tomorrow she'll head off on her own on the bus to her new school. She is in afternoon Kindergarten so even though Xander is going to the same school (new to him since we just moved) he'll go on the bus in the morning and I'll have to put her on by herself in the afternoon. I've been having great anxiety about my little sunshine that often cried and/or screamed when it was time to go to Preschool. The thought of that taking place out on the street corner has been daunting. But alas, I have had an inner dialog with myself to convince myself that either a) that won't actually happen or b) if it does, it's not the end of the world and we'll all survive. So with that being said, I'm ready for tomorrow to come. To put my smiling, waving 5-year-old on the bus and bid her farewell (well, for 3 hours anyway) OR put her on the bus kicking and screaming with a smile and wave on MY face to reassure her that it will all be okay. Happy first days to all of those out there embarking on this new adventure. I feel your pain/joy. :) Cheers.

Daddy's big fish

2010-08-18T20:35:00.001-04:00

Chloe went fishing with daddy this morning and look what they caught!!!!

Chloe in Maine

2010-08-18T15:23:00.002-04:00

Chloe in Maine with her cousin's shoes. Since she doesn't walk yet she wears shoes on her hands! LOL

Chloe Houdini

2010-08-17T21:19:00.003-04:00

It's been an interesting week so far in terms of Chloe and life with a child with special needs. First, Chloe Houdini has turned into quite the escape artist. She has managed to figure out how to climb out of her pack n play, which of course makes naptime and nighttime a wee bit more complicated. We have to get her to sleep before lying her down, which at home I often lie her down before she's asleep and then, even once she's asleep, we have to listen attentively to make sure we get there as soon as she stirs so we don't MISS her attempts at climbing out.

This new found skill brings me to the next interesting aspect of my week - thinking about my future with a child with special needs. Having had 2 children before Chloe I have realized that "this too shall pass" whenever I feel overwhelmed with a particular developmental time. Many parents with young children with Down syndrome feel that we're the lucky ones because we get to have our "babies" longer (or rather our children AS babies longer). This undoubtably, from my standpoint, is absolutely a benefit. My sweet little angel has taken longer to get through various developmental milestones and at 2 years is definitely more like a 1 year old in many ways. So I rejoice in getting to keep her younger a little longer. It's many parents' dream.

But there's another side to this "benefit" that includes getting "stuck" in the more difficult phases for longer periods. It can be overwhelming at times to think / feel that I won't get out of this particularly hard phase of development for a longer period and some aspects that I find difficult I'm not sure if we'll ever get out of (i.e., escaping). I need to feel some independance again. I know as a parent of 2 other children that this too shall pass. It's just been awhile and I'm starting to wonder WHEN???? I do also know as a 3rd time parent that what doesn't pass we learn techniques to deal with, but I guess I'm just not there yet. Guess I just need to remind myself!!! LOL

okay, time to return to the family gathering. More to come hopefully tomorrow about the conversation I had with my very bright 11-year-old niece about the "r-word". It was an inspiring conversation. She's quite an amazing little girl.

Off to Maine

2010-08-13T17:30:00.002-04:00

Well, even though we're not unpacked and settled into our new house, we are off for a week long family vacation in Maine. This is a bittersweet vacation for me. There's the obvious - going away before I've even had a chance to get adjusted to my new home, but then there's the other piece - going away to Maine for our annual family vacation for the first time without my step-father and "Bah-Pah" to the children. I am so excited to see my various siblings and their families. But I know there will be some emptiness there as well. We will all be missing him. But despite it all, he would want us to have a good time and enjoy ourselves in his honor, so that is what we have to do. And of course we get to return our Mainer to her birthplace - Chloe was born on vacation in Maine!!!! We had to drive over an hour in the pouring rain to get to the hospital and we were super worried about her heart defect, but all went without a hitch and we had an absolutely beautiful and wonderful experience. Yay Maine Medical Center! And don't worry, we're not leaving our house unattended. We have workers here all day long and a dog sitter here all night. Don't think/know if I'll have computer access so I may be signing off for the next week. Hope there is no drama out there in blog land. I'll be looking forward to catching up upon my return. Have a great, uneventful week. . .