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.
Wednesday, August 18, 2010
Tuesday, August 17, 2010
Chloe Houdini
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.
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.
Friday, August 13, 2010
Off to Maine
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. . .
Thursday, August 12, 2010
Happy Birthday to my very own Angel
Wednesday, August 11, 2010
Crisis Averted
Quick update - it appears as though the bleeding after I put the g-tube in yesterday was just irritation in the tract and NOT from a rupture of any kind. PHEW!
Tuesday, August 10, 2010
A Wee Bit of Drama
So, Chloe was enjoying some nice naked time after her bath. She was sitting in her IKEA egg chair and I thought that would be the perfect time to hook up her extention tube to her Mic-Key button (AKA her g-tube) and give her her meds. Even though we don't use the tube for feedings I still use it to give her meds because she doesn't like them and I figure I'll use it while it's still there. Anywho, she doesn't like taking her meds no matter what, so she grabbed her extention tube and gave it a good ol' YANK! And "POP!" out came her g-tube. After yelling for my husband and realizing he was beyond earshot, I laid her down on the floor, held her in place with my foot (since her stomach contents were sloshing out as she moved and I needed, for my own sanity to keep her still!) and phished around for the right syringe so I could deflate her g-tube balloon and relace it in the hole. I got myself organized and calm and simply inserted it back in the hole. But wouldn't ya know it, out slurped some blood. I wiped it off and checked her tube for blood and didn't find anymore. I handed her over to daddy and after debating with my mom decided to call her surgeon just to be sure. She said that it is possible for the tract to bleed and that the story seemed to be a positive one, but that if she showed ANY signs of discomfort or change in behavior that we not hesitate from bringing her in to the ER. I think she's fine, but I can't help wondering if I punctured something when I stuck the tube back in. How terrible would I feel???? Let's hope she just irritated the tract when she RIPPED out her tube (or I irritated it when I put it in). Only time will tell. . . wish us luck!
Moving Day Pics
All loaded up and ready to move! I left ahead of the movers to get the kids out of the house so daddy could finish packing. We had a full car load - me, my cousin Jonny, the 3 kids, the dog and the cat!!!
Ready for the 20 minute drive to our new house!
Cousin Jonny, who by the way, ROCKS!
Friday, August 6, 2010
Back Online!
It's been a crazy week and with no computer access, I've felt completely shut off from the world. Fortunately, I'm back online and ready to get reconnected. The move went fine. It took what seemed like F-O-R-E-V-E-R to unload the truck. My poor mom was off trying to juggle Chloe (yes, I said "juggle" because if you know Chloe at all she is ALL OVER the place and keeping track of her is like juggling!) and my awesome rockin' cousin Jonny who flew out from MN to help had the two big kids. The cat was wondering aimlessly in the woods and the dog was crated in my mom's cottage kitchen (we moved onto a property that has a main house for us and a cottage for my mom). I was a little stressed trying to keep everything straight. Oh and let's not forget my husband was in and out trying to replace the white dryer that was supposed to be blue - all while we're trying to move. But despite it all and the 10 hours it took to load, move and unload, we managed to get all moved in with little to no incidents. And I hate to admit it, but all those people who said "aw, you'll have fun setting up your new house" were actually right, it IS kinda fun ;)
As for the kids, they're all adjusting GREAT! I think the anticipation was harder then the actual move. Chloe's thrilled with all her new found space. And Xander and Sadie are just having fun exploring the new surroundings. The cat and the dog have even settled some. I think we're really going to like it here. :) Can't wait to post some pics!
Can't sign off without asking for prayers for sweet Jax and his family. Jax was taken by ambulance and is in the PICU. They need all our positive thoughts sent their way.
As for the kids, they're all adjusting GREAT! I think the anticipation was harder then the actual move. Chloe's thrilled with all her new found space. And Xander and Sadie are just having fun exploring the new surroundings. The cat and the dog have even settled some. I think we're really going to like it here. :) Can't wait to post some pics!
Can't sign off without asking for prayers for sweet Jax and his family. Jax was taken by ambulance and is in the PICU. They need all our positive thoughts sent their way.
Sunday, August 1, 2010
Moving Day 1 and other Grand Accomplishments
Well, the long awaited day is finally here. Sort of, anyway. Since we bought the house back in April and have been renovating we've slowly moved stuff over to the house into the basement. My mom's stuff has also gone down there and will be going up into the house. So today we move the stuff up from the basement and tomorrow is the final BIG move of all our stuff from one house to the other. I'll try to post pics in a few days, but you can assume I'll be out of touch briefly. So much to do, like installing gates around the stairs and baby proofing the house (why do they call it that? It's really toddler proofing. . . anyway. . .)
So a quick Chloe update. She's been trying to stand from the bear crawl position and has discovered she gets LOTS of attention when she does it! So as you can imagine she does it a LOT. She's also practicing walking while holding onto my fingers. Once we're settled I'll be sure to snap some video to post. She also continues to do GRRRREAT with the bottle and hasn't used her tube for 1 MONTH TODAY. woot! She contiues to astound and amaze me.
So a quick Chloe update. She's been trying to stand from the bear crawl position and has discovered she gets LOTS of attention when she does it! So as you can imagine she does it a LOT. She's also practicing walking while holding onto my fingers. Once we're settled I'll be sure to snap some video to post. She also continues to do GRRRREAT with the bottle and hasn't used her tube for 1 MONTH TODAY. woot! She contiues to astound and amaze me.
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