I've been really slack about the blog, but I do have some updates about Kinsey.
She was really sick last month and we thought we were managing it at home ok, but after a couple of days we ended up taking her to the hospital and it turned out she had Pneumonia! I got really scared at first because I remembered the nurses telling us when she was a tiny baby that pneumonia could kill her, but then I remembered that was because they were afraid she would aspirate (from the cleft palate) and get it that way. Plus pneumonia is always more dangerous for babies. Anyway, we caught it early and a couple weeks of antibiotics cleared it up quickly. But as a result of this latest illness, Jamie and I've become more vigilant t in our efforts to keep that poor girl healthy. We've switched her diet to include even more fruits and vegetables, she's now getting healthy doses of probiotics through a supplement and Kiefer, and we've added a multivitamin back in too. We're being even more careful about wiping down surfaces she comes in contact with when we're out and about (I'm already super neurotic about this) and washing her hands more frequently. Let's hope this all helps!
After this latest sickness, we're also working on getting some more equipment at home: a reliable, hospital-grade pulse ox machine to track her oxygen levels when she's needing it (right now we just have one of those finger things from Walgreens and it's really hard to get a good reading on her). And the dr at the hospital recommended a Therapy Vest to help "shake" the fluid out of her chest and lungs. They used it on her while she was in the hospital and so we're working on getting one to have at home too.
A couple of new and exciting things for Kinsey: first of all she's not really wearing bibs anymore! We stopped putting them on her when she was home for Christmas break and noticed she was doing really well without them. So she's generally not wearing them although I do still pack a couple in her school backpack in case she needs one and we do usually still put a bib on when she eats. She still occasionally insists on "sucking" on her thumb or holding a toy in her mouth and soaking herself in the process, but typically if she does that for a little while and gets wet, she stops and her clothes dry off and she stays dry the rest of the day. So it's still a mixed bag, but at least it's progress!
She's also recently become more helpful with getting dressed. She knows how to put her socks on by herself (although it usually takes her a very long time). She's understood for a long time how to help put her arms through her sleeves, but now she also helps with pulling her pants up. Most times I put her pants on her legs while she's laying down, but I only pull them up to about her knees and then stand her up to pull them up the rest of the way and now she will bend down and try to help pull them up. Again, progress!
Kinsey's the most amazing big sister I've ever seen! She's so loving towards Winnie and she likes to try to play with her. Now Winnie's really starting to react to her - she watches her walk around the room and smiles whenever Kinsey comes over to her. It's SO sweet watching them play together and I'm sure it will only become more fun as Winnie gets older.
Here are some pictures from the past month: https://kinseyandwinnie.shutterfly.com/pictures/51
Monday, February 15, 2016
Friday, January 1, 2016
Happy New Year!
I've been terrible about keeping the blog updated lately and even though this is the beginning of a new year, I'm not going to resolve to be better about it because I just know that won't happen! Most of you are on Facebook and see all the updates there anyway, so the blog has become pretty redundant - except for the few details I share here that I don't post on Facebook. Anyway, I will continue the blog, but just know and understand that the posts will be random and fewer than before :)
Overall 2015 was a great year for Kinsey. She's learned a lot of new things and changed a ton, but most significant of all, she became a big sister . . . something she's just great at! At the beginning of the year, I started a Memory Jar and tried to remember to add notes to it throughout the year. Of course, most of them ended up being about Kinsey (these are through the summer, after that I slacked off):
* Kinsey loving the splash parks
* Kinsey and Jamie playing peek a boo in the house construction
* Watching Kinsey "swim" by herself for the first time
* Kinsey going up the stairs on the playground by herself
* Kinsey laughing at Teddy (the hamster) on his wheel
Here's a link to some of the pictures from the last month or so: Pictures
Something new that has just happened is Kinsey is doing much better with her drooling! In fact, she hasn't worn a bib since she's been on Christmas break! She's definitely not done wearing them yet - she still drools a ton when she's too busy to pay attention to it or sticks a toy or thumb in her mouth, but she's improving and progress is always a good thing!
Kinsey got new glasses again recently - we went back to the old wire frame style because the newer ones she had just didn't stay on her face well. She has learned to push them up when they start falling down her nose and will even put them back on or hand them to one of us if they fall off. She doesn't seem to chew on them anymore, so that's really good too.
We're also working on getting Kinsey a new hearing aid. The one she has is nearly 5 years old now, which means it's pretty old technology. In fact the audiologist can't even hook it up to her computer system to program it anymore. Unfortunately insurance and medicaid don't cover hearing aids for some ridiculous reason (and her hearing aid costs $5000), but the company that makes it has a program that they will basically grant you the hearing aid if you have medicaid. You have to jump through a bunch of hoops and it takes about 6 months, but it will be worth it when we finally get it!
We're looking forward to tons of fun with Kinsey and Winnie this year and hoping for a few less hospital stays (Kinsey is getting sick less frequently, but last year every sickness landed her in the hospital instead of just one)!
Overall 2015 was a great year for Kinsey. She's learned a lot of new things and changed a ton, but most significant of all, she became a big sister . . . something she's just great at! At the beginning of the year, I started a Memory Jar and tried to remember to add notes to it throughout the year. Of course, most of them ended up being about Kinsey (these are through the summer, after that I slacked off):
* Kinsey loving the splash parks
* Kinsey and Jamie playing peek a boo in the house construction
* Watching Kinsey "swim" by herself for the first time
* Kinsey going up the stairs on the playground by herself
* Kinsey laughing at Teddy (the hamster) on his wheel
Here's a link to some of the pictures from the last month or so: Pictures
Something new that has just happened is Kinsey is doing much better with her drooling! In fact, she hasn't worn a bib since she's been on Christmas break! She's definitely not done wearing them yet - she still drools a ton when she's too busy to pay attention to it or sticks a toy or thumb in her mouth, but she's improving and progress is always a good thing!
Kinsey got new glasses again recently - we went back to the old wire frame style because the newer ones she had just didn't stay on her face well. She has learned to push them up when they start falling down her nose and will even put them back on or hand them to one of us if they fall off. She doesn't seem to chew on them anymore, so that's really good too.
We're also working on getting Kinsey a new hearing aid. The one she has is nearly 5 years old now, which means it's pretty old technology. In fact the audiologist can't even hook it up to her computer system to program it anymore. Unfortunately insurance and medicaid don't cover hearing aids for some ridiculous reason (and her hearing aid costs $5000), but the company that makes it has a program that they will basically grant you the hearing aid if you have medicaid. You have to jump through a bunch of hoops and it takes about 6 months, but it will be worth it when we finally get it!
We're looking forward to tons of fun with Kinsey and Winnie this year and hoping for a few less hospital stays (Kinsey is getting sick less frequently, but last year every sickness landed her in the hospital instead of just one)!
Wednesday, November 18, 2015
Kinsey is 5!
It's hard to believe that Kinsey is now a 5 year old! Five years ago, I never dreamt that I'd be saying those words. I remember being so on edge the ENTIRE first year of her life and being afraid to make plans for her first birthday party, even right up until the day of her birthday. You may remember only 10 percent of Trisomy babies live to see their first birthday. I'm so relieved that I no longer live in that constant state of fear that we might lose her - in fact I no longer worry about that at all really! (That's not to say I haven't found plenty of other things to worry about when it comes to her, but that's another story.) Anyway, I bring that up because turning 5 is another major milestone for Kinsey - only 5 percent of Trisomy kids live to see their 5th birthday! Just proving, yet again, how very special, unique and amazing our Kinsey truly is!
So here are some pictures from her fabulous 5th birthday party. We had a My Little Pony theme with live ponies here - although I think most of the kids were more excited about the barrel train than the ponies! Kinsey blew out her own candle this year and enjoyed all the attention of everyone singing to her again (such a ham!).
Today Kinsey appears to be fighting off a cold. Jamie and I have been sick this week with a minor cold and she's showing signs of getting it, but still acting like her usual self for now. Pray that she doesn't get "hospital sick" this time!
So here are some pictures from her fabulous 5th birthday party. We had a My Little Pony theme with live ponies here - although I think most of the kids were more excited about the barrel train than the ponies! Kinsey blew out her own candle this year and enjoyed all the attention of everyone singing to her again (such a ham!).
Today Kinsey appears to be fighting off a cold. Jamie and I have been sick this week with a minor cold and she's showing signs of getting it, but still acting like her usual self for now. Pray that she doesn't get "hospital sick" this time!
Wednesday, October 21, 2015
A Quick Update
It's been pretty hard to keep up with the blog lately - very difficult to type when holding a baby!
Anyway, I wanted to provide a quick update. Kinsey really loves being a big sister - she tries to be very helpful giving Winnie her pacifier, patting her on the back, wrapping her up in her burp cloth like a blanket, etc. Of course we have to watch her very carefully because she doesn't exactly know when she's being too rough, but she's generally very good with her. We haven't seen any jealousy issues so that's wonderful!
Unfortunately Kinsey caught a cold a couple of weeks ago and spent the weekend in the hospital. That was really hard because I couldn't be with her - no way I can be in two places at once and we didn't want to expose Winnie to the hospital germs. (Winnie and I had already caught the same cold, only a much milder version of it so we stayed home while Jamie and my dad were with Kinsey.) It was just a cold, but as usual it hit her harder than a cold should and she was in the hospital because of her low oxygen levels. She came home on Monday and recovered quickly. She was really excited to see me and Winnie again too!
Developmentally Kinsey is getting better every day at using silverware. She's really good at putting food on a spoon all by herself (sticky things like yogurt or even jello) and getting the spoon to her mouth without losing the food on the way. You can really see her watching to be sure she doesn't turn the spoon upside down. And she's getting better at using a fork too - she's just recently become successful at stabbing food with the fork and getting it to her mouth. She's been attempting to stab food for a while, but usually gets a little over zealous with it and ends up with nothing on the fork in the end, but she's getting more controlled with her efforts and doing better now. I've been trying for some time to get this new skill on video, but as usual she stops doing it as soon as I pull out the camera, but I caught her in the act when we were at a restaurant recently and she was distracted :) Here's the video.
Other than that, here are some pictures from the last few weeks. Enjoy!
Anyway, I wanted to provide a quick update. Kinsey really loves being a big sister - she tries to be very helpful giving Winnie her pacifier, patting her on the back, wrapping her up in her burp cloth like a blanket, etc. Of course we have to watch her very carefully because she doesn't exactly know when she's being too rough, but she's generally very good with her. We haven't seen any jealousy issues so that's wonderful!
Unfortunately Kinsey caught a cold a couple of weeks ago and spent the weekend in the hospital. That was really hard because I couldn't be with her - no way I can be in two places at once and we didn't want to expose Winnie to the hospital germs. (Winnie and I had already caught the same cold, only a much milder version of it so we stayed home while Jamie and my dad were with Kinsey.) It was just a cold, but as usual it hit her harder than a cold should and she was in the hospital because of her low oxygen levels. She came home on Monday and recovered quickly. She was really excited to see me and Winnie again too!
Developmentally Kinsey is getting better every day at using silverware. She's really good at putting food on a spoon all by herself (sticky things like yogurt or even jello) and getting the spoon to her mouth without losing the food on the way. You can really see her watching to be sure she doesn't turn the spoon upside down. And she's getting better at using a fork too - she's just recently become successful at stabbing food with the fork and getting it to her mouth. She's been attempting to stab food for a while, but usually gets a little over zealous with it and ends up with nothing on the fork in the end, but she's getting more controlled with her efforts and doing better now. I've been trying for some time to get this new skill on video, but as usual she stops doing it as soon as I pull out the camera, but I caught her in the act when we were at a restaurant recently and she was distracted :) Here's the video.
Other than that, here are some pictures from the last few weeks. Enjoy!
Friday, September 18, 2015
Enjoying her New Role as Big Sister
Kinsey is officially a big sister and she's loving it! Winnie Ann made her debut into the world 2 weeks ago on September 4th at 12:48 am. She came quickly (we got to the hospital at 11 pm and I wasn't even sure I was having real contractions since I'd had so many braxton hicks, but she was born less than 2 hours later). Winnie is amazing and doing great!
Kinsey got to meet her little sister later that morning at the hospital and she was instantly in love! She really wants to play with her - constantly trying to hold her hand or give toys to her. She loves to sit and "hold" her, always comes with me into Winnie's nursery to watch me change her diaper, has helped to feed her a bottle and is very curious when I'm feeding her. She gets excited every morning when she sees her again (yes, she's still here!). I sent a picture to school and the teachers said Kinsey was all excited when they shared it with the other kids at circle time and she was so proud to show her off when I came to pick her up from school with Winnie earlier this week.
She's adjusted well and hasn't been very jealous, although we have seen her get a little upset when she can't get my attention on a few occasions. The hardest part is stopping her from getting into trouble when I'm busy feeding Winnie and can't really get up. But I think we'll both get better at that - sometimes she listens well and I'm sure in time I"ll be able to multi-task through feedings.
Anyway, here are some pictures from the last couple of weeks: https://winnieann.shutterfly.com/pictures
Kinsey got to meet her little sister later that morning at the hospital and she was instantly in love! She really wants to play with her - constantly trying to hold her hand or give toys to her. She loves to sit and "hold" her, always comes with me into Winnie's nursery to watch me change her diaper, has helped to feed her a bottle and is very curious when I'm feeding her. She gets excited every morning when she sees her again (yes, she's still here!). I sent a picture to school and the teachers said Kinsey was all excited when they shared it with the other kids at circle time and she was so proud to show her off when I came to pick her up from school with Winnie earlier this week.
She's adjusted well and hasn't been very jealous, although we have seen her get a little upset when she can't get my attention on a few occasions. The hardest part is stopping her from getting into trouble when I'm busy feeding Winnie and can't really get up. But I think we'll both get better at that - sometimes she listens well and I'm sure in time I"ll be able to multi-task through feedings.
Anyway, here are some pictures from the last couple of weeks: https://winnieann.shutterfly.com/pictures
Saturday, August 29, 2015
End of Summer and Back to School
Kinsey went back to school this week for her final year of preschool. She's been really excited to be back and the teachers say she had a great day all week. Her class is a little different this year...they've integrated some kids that are "in need" of early preschool for reasons other than developmental disability (previously these kids were in the other preschool class and her class was just kids more like her). The last 2 years there weren't more than 6 kids in her class and this year there are 10 now, with a max of 12, but still the same 4 adults (2 teachers and 2 aides). I'm not entirely comfortable with this since it means Kinsey is exposed to more germs and less one on one attention, but she really likes it and will probably get a lot out of having more "regular" kids around her.
I found a bunch of pictures on my phone this week that I forgot to share, so here's a little photo catch up:
I took Kinsey to the movies for the first time this summer. It was a $1 kids movie thing the theatre does during the summer months, so it was during the morning with tons of other kids and I wasn't out a lot of money if she decided not to sit through it. We went with Aliy and her kids and Cathy's too. To my shock, she sat through the entire movie (plus 20 minutes of previews) without any real fidgeting and she loved it!
A few weeks ago we went on a short "hike" with some of our MOPS friends. Kinsey walked a little bit of the hike all by herself, but she rode in the stroller for the most part. She had a great time.
When Gramma was here for the pageant and baby shower, we also went to the Larimer County Fair. Gramma got to take Kinsey on a pony ride:
Kinsey recently learned how to operate the trigger on her bubble gun. She LOVES running around the house shooting bubbles everywhere. The bubbles don't always come out, but it always lights up and she just has the best time. Here's a video.
We are still waiting on Winnie's arrival - about a week until her due date to go! That's it for now.
I found a bunch of pictures on my phone this week that I forgot to share, so here's a little photo catch up:
I took Kinsey to the movies for the first time this summer. It was a $1 kids movie thing the theatre does during the summer months, so it was during the morning with tons of other kids and I wasn't out a lot of money if she decided not to sit through it. We went with Aliy and her kids and Cathy's too. To my shock, she sat through the entire movie (plus 20 minutes of previews) without any real fidgeting and she loved it!
A few weeks ago we went on a short "hike" with some of our MOPS friends. Kinsey walked a little bit of the hike all by herself, but she rode in the stroller for the most part. She had a great time.
 | ||
| All the kids enjoying our lunch spot |
When Gramma was here for the pageant and baby shower, we also went to the Larimer County Fair. Gramma got to take Kinsey on a pony ride:
Kinsey recently learned how to operate the trigger on her bubble gun. She LOVES running around the house shooting bubbles everywhere. The bubbles don't always come out, but it always lights up and she just has the best time. Here's a video.
We are still waiting on Winnie's arrival - about a week until her due date to go! That's it for now.
Friday, August 14, 2015
Pageant Girl
Last weekend Kinsey participated in the Colorado Angels Pageant again. We had a busy weekend with Gramma visiting and the pageant on Saturday morning and Winnie's baby shower that night! Many thanks to everyone who came out to be in her cheering section again this year :) It was fun to see her be able to walk out on the stage all by herself this year! The pictures from the pageant can be seen here. (if you've seen them on Facebook already, they're the same).
Speech therapy has been going well so far, although I'm not sure Kinsey would agree. The therapist is pushing her and she gets pretty frustrated! One of the reasons we started additional speech therapy is because she seems to be getting more frustrated with not being able to communicate what she wants. She's been doing a lot of screeching lately, which is definitely not my favorite sound. We've also been struggling with her attitude mostly in the evenings - dinner and afterwards. So in addition to the therapy, we've "reinstituted" nap time. . . sort of. Kinsey stopped napping regularly at about 2 years old. For the past few years the only time she takes a nap is when she is sick or very occasionally in the car. But we've decided to give it a try, so for a little over a week we've been very consistent about making her lay down in her crib every afternoon from about 2-3 pm. She hasn't napped yet, but she lays down and sometimes quietly for that time period and it seems to be helping.
We are getting ready for back to school in a little over a week - Preschool starts on Tues Aug 25th. I'm sure Kinsey will be excited to be back at school with her friends. We're also getting really close to Winnie's arrival - about 3 weeks to go!
We did a family maternity photo shoot recently. Here's a link to the pictures. You just have to enter my email address to see them (tristagangestad@gmail.com).
Speech therapy has been going well so far, although I'm not sure Kinsey would agree. The therapist is pushing her and she gets pretty frustrated! One of the reasons we started additional speech therapy is because she seems to be getting more frustrated with not being able to communicate what she wants. She's been doing a lot of screeching lately, which is definitely not my favorite sound. We've also been struggling with her attitude mostly in the evenings - dinner and afterwards. So in addition to the therapy, we've "reinstituted" nap time. . . sort of. Kinsey stopped napping regularly at about 2 years old. For the past few years the only time she takes a nap is when she is sick or very occasionally in the car. But we've decided to give it a try, so for a little over a week we've been very consistent about making her lay down in her crib every afternoon from about 2-3 pm. She hasn't napped yet, but she lays down and sometimes quietly for that time period and it seems to be helping.
We are getting ready for back to school in a little over a week - Preschool starts on Tues Aug 25th. I'm sure Kinsey will be excited to be back at school with her friends. We're also getting really close to Winnie's arrival - about 3 weeks to go!
We did a family maternity photo shoot recently. Here's a link to the pictures. You just have to enter my email address to see them (tristagangestad@gmail.com).
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