
is the story of one family's journey through life with a very special child with Down syndrome and a complicated medical history and how we have learned to DANCE through the tulips.
Thursday, June 9, 2011
Tuesday, June 7, 2011
Wedding Weekend Round 3 Pictures
Wedding Weekend Round 2 Pictures
Saturday, June 4, 2011
Round 1 Pictures

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!!!!
Tuesday, May 31, 2011
Peace was Restored
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!
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!
Monday, May 23, 2011
Confessions of a Playdate Host and A Big Thump and a Cry!
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.
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.
Friday, May 20, 2011
A Lot on My Mind
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).
*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).
Tuesday, May 17, 2011
Our Little Rock Star
Scroll down to pause the blog site music and watch Chloe rock out with her PaperJamz guitar!
Friday, May 13, 2011
A BIG Day
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".




Here are some pics from the last few days including one of her just after she got back from "school".
Tuesday, May 10, 2011
A Trifecta
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.
Sunday, May 8, 2011
A Pheonix
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. :)

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. :)
Friday, April 29, 2011
Sweet and Innocent??? And a Spring Photo Shoot
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. ;)
Wednesday, April 27, 2011
Eye Doc and Transition Meeting
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! ;)
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! ;)
Monday, April 25, 2011
Cardio Update
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!)
One appointment down. . . 7 to go (counting therapy!)
Dr. Appts and Some Easter Pics
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!








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


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