Lillian had a lot of appointments this past week. I was the most nervous for her evaluation with Early Intervention. We found out that she's right where any other baby her age would be expected to be!
The therapists did a lot of cute little exercises with Lily. They played and sang and rolled around for about an hour. The only things Lillian is a little behind on are physical, which is good because those things are easier to teach. She did so good, that they're going to call me in two months to see if I even want them to come back.
I'm very thankful for the services that are available to children with disabilities here. Even if we don't need them right now, it was awesome to be able to find out that we don't need them! It's also great that they'll always be there if we have problems down the road.
I think that this just goes to show that it's best to treat everyone equally. Not too long ago, children with DS were thrown in nursing homes. People thought there wasn't anything we could do to help them, and so nothing was done. When I was researching DS after we found out Lillian had it, I kept coming across the new statistics that give these children a longer life expectancy, higher IQs, and a better quality of life. It isn't just because of research. My Lily has a chance at a normal life because we treat her like we would if she didn't have DS.
On that note, something pretty interesting popped up on my newsfeed.
http://www.sciencecodex.com/extra_chromosome_21_removed_from_down_syndrome_cell_line-101751
It's apparently sparking some controversy. Personally, I appreciate that they say they aren't proposing a "cure" for DS. This is simply a step forward to finding a treatment for certain things that come along with having Down Syndrome. What do you think about the study?
- Bethany
Saturday, November 10, 2012
Sunday, November 4, 2012
What's a hurricane?
We don't get a lot of those where I'm from. Although I wasn't hit hard at all compared to other parts of the coast, it's kept us pretty busy this past week!
I was super prepared. I filled up the bathtub and every container I could find with water, made food that we wouldn't need to cook if the power went out, took down everything outside that could blow away, and waited to be in the dark for at least a day.
The power flickered and I thought that was the end to our fun night of WWE and snacks. False alarm.
The power went off and I KNEW it was staying off. False alarm.
The power went off and at this point we were tired of DirecTv restarting and taking forever and waiting for the internet to get back to where it was supposed to be.
That was it.
Our yard was a bit of a mess. The skirting of our mobile home was blown off in some spots. Our trash can blew away. The cute little solar lights are apart and scattered throughout the yard.
The worst part of this storm for me was working the weekend before it happened and the weekend that we got everything back in stock that everyone bought up in preparation for this storm. Some people are just crazy! All of my jobs have been in some sort of store, since I was 16. I have NEVER seen anything like I've witnessed these last two weekends.
Were you hit by Sandy? I guess I was. But she was all worn out before she got to me.
I hope everyone is keeping the rest of the east coast in their thoughts! I may not have been hit hard, but jeeeeez it was terrible in some places!
Bethany
I was super prepared. I filled up the bathtub and every container I could find with water, made food that we wouldn't need to cook if the power went out, took down everything outside that could blow away, and waited to be in the dark for at least a day.
The power flickered and I thought that was the end to our fun night of WWE and snacks. False alarm.
The power went off and I KNEW it was staying off. False alarm.
The power went off and at this point we were tired of DirecTv restarting and taking forever and waiting for the internet to get back to where it was supposed to be.
That was it.
Our yard was a bit of a mess. The skirting of our mobile home was blown off in some spots. Our trash can blew away. The cute little solar lights are apart and scattered throughout the yard.
The worst part of this storm for me was working the weekend before it happened and the weekend that we got everything back in stock that everyone bought up in preparation for this storm. Some people are just crazy! All of my jobs have been in some sort of store, since I was 16. I have NEVER seen anything like I've witnessed these last two weekends.
Were you hit by Sandy? I guess I was. But she was all worn out before she got to me.
I hope everyone is keeping the rest of the east coast in their thoughts! I may not have been hit hard, but jeeeeez it was terrible in some places!
Bethany
Wednesday, October 24, 2012
Echocardiograms Suck.
Monday was another appointment for Lillian.
Most children with Down's Syndrome are born with heart defects. This is one of the reasons I'm glad my daughter's doctor tested for everything possible even when he didn't think there was an issue. She never had problems with her breathing and didn't have a murmur when she was born. If she hadn't been tested for DS, we wouldn't have taken her to get her first echocardiogram. Then we wouldn't have known anything was wrong!
She has an Atrial Septal Defect and Pulmonary Valve Stenosis. That's fancy for some holes in the wall of her heart and a valve that's too small, which increases the pressure of the blood being pumped from the heart. That sounds so scary! Thankfully, the holes are small and are letting oxygenated blood back in to the blood being sent to her lungs. If it were the other way around, there would be much more complicated problems.
When we found out she had these issues, they told us that they were very mild and could possibly heal on their own as she gains weight. She's had two appointments since then, and nothing has changed. That isn't terrible, but it isn't too good either. They started her on medicine this week, and she goes back in another 5 months. They're hoping that they'll be able to wait until it all heals, or at least until she's big enough to use catheters in place of surgery.
The prescription is for Lasix and is supposed to help her pee more often to help clear toxins and make more room for blood flow to decrease the heart's work load. Hopefully there's some improvement by our next visit!
Here's some baby giggles for everyone :)
- Bethany
Most children with Down's Syndrome are born with heart defects. This is one of the reasons I'm glad my daughter's doctor tested for everything possible even when he didn't think there was an issue. She never had problems with her breathing and didn't have a murmur when she was born. If she hadn't been tested for DS, we wouldn't have taken her to get her first echocardiogram. Then we wouldn't have known anything was wrong!
She has an Atrial Septal Defect and Pulmonary Valve Stenosis. That's fancy for some holes in the wall of her heart and a valve that's too small, which increases the pressure of the blood being pumped from the heart. That sounds so scary! Thankfully, the holes are small and are letting oxygenated blood back in to the blood being sent to her lungs. If it were the other way around, there would be much more complicated problems.
When we found out she had these issues, they told us that they were very mild and could possibly heal on their own as she gains weight. She's had two appointments since then, and nothing has changed. That isn't terrible, but it isn't too good either. They started her on medicine this week, and she goes back in another 5 months. They're hoping that they'll be able to wait until it all heals, or at least until she's big enough to use catheters in place of surgery.
The prescription is for Lasix and is supposed to help her pee more often to help clear toxins and make more room for blood flow to decrease the heart's work load. Hopefully there's some improvement by our next visit!
Here's some baby giggles for everyone :)
- Bethany
Tuesday, October 23, 2012
I was really hungry for deep fried Oreos....
Too bad we can't use our stove, and I don't have a deep fryer...
Or maybe it's not so bad?
I decided I was going to have my dessert. So I whipped up some pancake mix, dipped my Oreos in...
And baked them!
They were delicious. Andrew even enjoyed them!
If you want to try them out, they're pretty easy to make.
Butter your cookie sheet.
Set the oven to 375.
Make the pancake batter.
I used a quick, "just add water" pancake mix. Make sure that the batter is thick enough to coat the cookie instead of soaking into it.
Bake them immediately.
It's important to have the oven heated and the cookie sheet ready to go. Nobody likes soggy cookies, and that's what you'll get if they have to sit in wet batter while you prepare to bake them.
Leave them in for 5-10 minutes.
I used a toaster oven, so times in a standard oven will vary. Golden tops are always a good sign that they're finished!
How I served them:
I put each serving in a bowl and sprinkled them with powdered sugar, then added a side of frozen Cool Whip. I loooooove frozen Cool Whip, it only has 30 calories in a four tablespoon serving and is super tasty! It was a nice addition to the baked Oreos because it help cut through the heaviness of the cookies. I made six Oreos because I made more batter than I wanted to, so each of us had three. That was pretty unnecessary, you'll be good with two or even one depending on how generously you coat them.
Let me know if you try them out and if you modified the recipe to make them more delicious!
- Bethany
Or maybe it's not so bad?
I decided I was going to have my dessert. So I whipped up some pancake mix, dipped my Oreos in...
And baked them!
They were delicious. Andrew even enjoyed them!
If you want to try them out, they're pretty easy to make.
Butter your cookie sheet.
Set the oven to 375.
Make the pancake batter.
I used a quick, "just add water" pancake mix. Make sure that the batter is thick enough to coat the cookie instead of soaking into it.
Bake them immediately.
It's important to have the oven heated and the cookie sheet ready to go. Nobody likes soggy cookies, and that's what you'll get if they have to sit in wet batter while you prepare to bake them.
Leave them in for 5-10 minutes.
I used a toaster oven, so times in a standard oven will vary. Golden tops are always a good sign that they're finished!
How I served them:
I put each serving in a bowl and sprinkled them with powdered sugar, then added a side of frozen Cool Whip. I loooooove frozen Cool Whip, it only has 30 calories in a four tablespoon serving and is super tasty! It was a nice addition to the baked Oreos because it help cut through the heaviness of the cookies. I made six Oreos because I made more batter than I wanted to, so each of us had three. That was pretty unnecessary, you'll be good with two or even one depending on how generously you coat them.
Let me know if you try them out and if you modified the recipe to make them more delicious!
- Bethany
Monday, October 22, 2012
HAIR?!
I found something horrifying in my shower the other morning...
The drain was completely full of Andrew's long hair.
We don't have one of those nifty plastic snakes here, so I had to use a fork to get it all out. It was covered in shampoo, and it was pretty gross. Once it was all out of the drain and in the tub, it was about two fist-fulls. Sadly, I remember doing that to my parents' bathroom everyday.
I've dyed my hair black. Then back to brown. Bleached it. Dyed it purple, blue, teal, green, orange, pink, red, blue, purple, green, pink, blue, and teal again. Then back to black. Have you ever seen "coontails"? Mhm, I've bleached my hair from black to blonde and gave myself real coontails so I wouldn't have to clip some extensions in. If that doesn't sound terrifying, keep in mind that I also blow dry and straighten my hair daily. Oh, and after the coontails, I dyed it burgundy and decided I needed to chemically straighten it. Seriously?
My hair was constantly breaking and falling out. Especially in the shower. It was always frizzy and fuzzy looking, and there was a good two years where I couldn't grow it past my shoulders. I learned a lot of little tricks make my hair look and feel better after all the damage I caused. You may already know some of them, but I decided to share some of them here!
DO NOT BRUSH YOUR HAIR WHEN IT'S WET
When your hair is wet, it's weaker than when it's dry. While you're using your normal brush to detangle after your shower, you're actually pulling and stretching the strands until it finally breaks.
Use a comb designed for wet hair!
You can find them in any store that sells hair products. They are often marked as Shower Comb, Detangle/Condition Comb. They have thick teeth and are set further apart than most combs.
I use one like this.
MORE $$$ DOESN'T MEAN IT'S MAGIC
Especially when it comes to shampoo. If you have normal hair, you can really use $0.79 Suave shampoo. I've noticed that as long as I use a normal clarifying shampoo, I only need to worry about the conditioner. Even then I use a regular conditioner. When my hair was still totally fried, the money I was saving by buying cheaper shampoo and conditioner went to all the different serums and leave in conditioner.
HOMEMADE TREATMENTS WORK BETTER
And they're cheaper. You usually have this stuff in your fridge or cabinets. Different combinations of eggs, mayo, yogurt, honey, avocodo, olive oil, lemon, and even BEER work wonders on your hair.
Here are some homemade remedies!
YOUR STRAIGHTENER IS A FINISHER
If you want straight hair, you should be blow drying with a large round brush to blow out your hair before you use the straightener. Wet-Dry straighteners are very damaging to your hair - you're not only heating your hair, but the water is being steamed while it's still in your hair. See smoke? Yeah, that isn't good for your head.
BLOW DRY! DON'T TOWEL DRY!
When you towel dry your hair, you're pretty much rubbing your hair apart and causing knots and breakage. Pat dry your hair with the towel to get the excess water out, and air dry. If you can't air dry (and who really has the time to wait?), blow dry on low or medium until your hair is 80-90% dry before putting it on full blast.
JUST STOP HURTING YOUR HAIR
While all of these things helped me in the past, my hair has been it's healthiest while I was pregnant and ever since giving birth. Some would say it's because of the prenatal vitamins and just a common pregnancy symptom. I say it's because I was much more cautious about what I was doing to my hair so I could stay clear of hurting my baby. I stopped dying my hair until my doctor said it was okay to do so, and even then I only did it twice to fix my roots. Since having Lillian, I HAVE dyed my hair a few times. I even bleached a few parts to dye it purple. It definitely felt healthier than before because of the long break between dye jobs, but I still didn't like the way my hair felt and decided to just let it be. Being pregnant also made me eat healthier. Honestly, that was more because I couldn't handle sweets or greasy food instead of a 100% conscience decision. But what we put in our mouths effects everything in and on our bodies, including our hair.
I hope you found something that will help your hair on here! What do you do to make your hair feel healthier?
- Bethany
The drain was completely full of Andrew's long hair.
We don't have one of those nifty plastic snakes here, so I had to use a fork to get it all out. It was covered in shampoo, and it was pretty gross. Once it was all out of the drain and in the tub, it was about two fist-fulls. Sadly, I remember doing that to my parents' bathroom everyday.
I've dyed my hair black. Then back to brown. Bleached it. Dyed it purple, blue, teal, green, orange, pink, red, blue, purple, green, pink, blue, and teal again. Then back to black. Have you ever seen "coontails"? Mhm, I've bleached my hair from black to blonde and gave myself real coontails so I wouldn't have to clip some extensions in. If that doesn't sound terrifying, keep in mind that I also blow dry and straighten my hair daily. Oh, and after the coontails, I dyed it burgundy and decided I needed to chemically straighten it. Seriously?
My hair was constantly breaking and falling out. Especially in the shower. It was always frizzy and fuzzy looking, and there was a good two years where I couldn't grow it past my shoulders. I learned a lot of little tricks make my hair look and feel better after all the damage I caused. You may already know some of them, but I decided to share some of them here!
DO NOT BRUSH YOUR HAIR WHEN IT'S WET
When your hair is wet, it's weaker than when it's dry. While you're using your normal brush to detangle after your shower, you're actually pulling and stretching the strands until it finally breaks.
Use a comb designed for wet hair!
You can find them in any store that sells hair products. They are often marked as Shower Comb, Detangle/Condition Comb. They have thick teeth and are set further apart than most combs.
I use one like this.
MORE $$$ DOESN'T MEAN IT'S MAGIC
Especially when it comes to shampoo. If you have normal hair, you can really use $0.79 Suave shampoo. I've noticed that as long as I use a normal clarifying shampoo, I only need to worry about the conditioner. Even then I use a regular conditioner. When my hair was still totally fried, the money I was saving by buying cheaper shampoo and conditioner went to all the different serums and leave in conditioner.
HOMEMADE TREATMENTS WORK BETTER
And they're cheaper. You usually have this stuff in your fridge or cabinets. Different combinations of eggs, mayo, yogurt, honey, avocodo, olive oil, lemon, and even BEER work wonders on your hair.
Here are some homemade remedies!
YOUR STRAIGHTENER IS A FINISHER
If you want straight hair, you should be blow drying with a large round brush to blow out your hair before you use the straightener. Wet-Dry straighteners are very damaging to your hair - you're not only heating your hair, but the water is being steamed while it's still in your hair. See smoke? Yeah, that isn't good for your head.
BLOW DRY! DON'T TOWEL DRY!
When you towel dry your hair, you're pretty much rubbing your hair apart and causing knots and breakage. Pat dry your hair with the towel to get the excess water out, and air dry. If you can't air dry (and who really has the time to wait?), blow dry on low or medium until your hair is 80-90% dry before putting it on full blast.
JUST STOP HURTING YOUR HAIR
While all of these things helped me in the past, my hair has been it's healthiest while I was pregnant and ever since giving birth. Some would say it's because of the prenatal vitamins and just a common pregnancy symptom. I say it's because I was much more cautious about what I was doing to my hair so I could stay clear of hurting my baby. I stopped dying my hair until my doctor said it was okay to do so, and even then I only did it twice to fix my roots. Since having Lillian, I HAVE dyed my hair a few times. I even bleached a few parts to dye it purple. It definitely felt healthier than before because of the long break between dye jobs, but I still didn't like the way my hair felt and decided to just let it be. Being pregnant also made me eat healthier. Honestly, that was more because I couldn't handle sweets or greasy food instead of a 100% conscience decision. But what we put in our mouths effects everything in and on our bodies, including our hair.
I hope you found something that will help your hair on here! What do you do to make your hair feel healthier?
- Bethany
Thursday, October 18, 2012
Lillian Ainsley
This is my little angel, Lillian. The day I had her, my life had real purpose. I'm sure all parents feel this way!
Lillian and her dad, Andrew. You can't tell in this picture, but there are tears!
Lillian was born June 30, 2012 at 1:45 PM. It was the most exciting day of my life, not to mention STRESSFUL, and I'll never forget it! I've never seen anything so frickin' beautiful. I never thought I would love anything or anyone so much! The whole time you're pregnant, you think the same thing - that you love this little person more than anything in the world. Then you give birth to them, and the moment you see them, you love them even more!
We couldn't wait to bring her home for all of our friends to see our little creation. We were OK'd to leave on the second day of being in the hospital. Two days of terrible food. Two days of sleeping in an uncomfortable bed with an IV in my arm "just in case". Two days of poor Andrew sleeping in a chair. Two days of being away from home and away from friends and family. Yes, we were ready to leave!
My daughter's doctor came in to check on how she was doing. "How much is she eating? How many wet diapers? Dirty diapers? How is she sleeping? Good, good." He was checking her eyes, ears, mouth, muscle tone, and continued to tell me how great she was. Then, "So I'm looking at her eyes, and they kind of have an odd look to them. I think we should take some blood and test her for Down's Syndrome."
Not uh. You did NOT just tell me my baby has odd eyes. Those are THE prettiest eyes in the entire world. They belong to the prettiest girl in the entire world. So you're just a crazy guy. I was livid, but he followed that up with, "Don't worry, I don't expect anything to come back out of the ordinary but I don't want to miss anything." Fine, but I was still angry at him.
Since he decide to take blood at the time we were supposed to be leaving, we ended up being in the hospital until late that evening. We left. Stopped for some fast food that tasted like Heaven compared to what we were served all weekend. Andrew pulled over to look at our baby again and cried, "I just love her so much!" That was followed by a bunch of hugs. We were finally home and everyone that was dying to see her came to meet her over the next couple weeks.
She absolutely adores her dad!
About two weeks after we brought her home, I was getting groceries and stopping to get pizza when a nurse from her doctor's office called. She told me Andrew and I had to come in at 5:00, and stressed that Andrew NEEDED to be with. I called Andrew and told him we had to eat super fast and to be prepared because I didn't think they'd make us drive in there to tell us how pretty our Lillian is. He responded with, "Well that better be why they're calling us in there. Nothing is wrong with her."
He was absolutely right, she's perfect!
We sat in the waiting room for what felt like forever, I was sweating like crazy and was already having a hard time not crying. We got called back by her nurse, they checked her weight and length and told us how adorable she was. Those things usually make me very happy, but I knew why we were here and I was tired of people ignoring it. Finally, we sat down and her doctor handed us some papers on Down's Syndrome. He explained that her karyotype came back postivie for Trisomy 21. He told us this could be the best thing that has ever happened to us, and told us everything he could about her condition. I was crying the entire time and fed and played with Lillian, Andrew was a bit stronger and was the one asking questions. We were referred to a geneticist in Hershey and given information on Early Intervention. The doctor said we could stay as long as we needed before the drive home, and he walked out. We both hugged and bawled for a few minutes. I cried the entire drive home and again once we got home.
I Googled Down's Syndrome and found so many sites telling me to take the time to mourn the child I didn't have before I try to accept the child I do have. Seriously?! This made me more upset than anything I heard up to this point. I wasn't crying because I didn't love her anymore. I wasn't mad that she wasn't normal. I was crying because of the people that say those things. I'm only 20 years old, so my high school days aren't too far behind me, and I know how cruel children can be. Lillian is the best thing in my life, and I can't imagine anyone looking at their own child and thinking about how they didn't have the child they wanted, sydrome or no syndrome.
I Googled Down's Syndrome and found so many sites telling me to take the time to mourn the child I didn't have before I try to accept the child I do have. Seriously?! This made me more upset than anything I heard up to this point. I wasn't crying because I didn't love her anymore. I wasn't mad that she wasn't normal. I was crying because of the people that say those things. I'm only 20 years old, so my high school days aren't too far behind me, and I know how cruel children can be. Lillian is the best thing in my life, and I can't imagine anyone looking at their own child and thinking about how they didn't have the child they wanted, sydrome or no syndrome.
I couldn't have asked for a better child!
She's growing up so fast already!
I know there are a lot of blogs about children with Down's Syndrome. That isn't the sole purpose of this one, but this is obviously a huge part of my life. I would like to see more people talking about how fantastic and NORMAL these children are, and I'm going to try to incorporate that with regular updates on our little girl. She has a huge personality and surprises us everyday, so you can expect to see those often.
Our little family!
If you or anyone you know would like to chat about these little miracles, whether to give or get support or just share stories, please contact me! We're looking forward to meeting other families going through the same process.
- Bethany
First official post!
I think it's funny that I just started a blog. Of course, I had a Xanga, Myspace, and currently have a Facebook profile. I'm 20 years old and had to ask my mother how to do this throughout the entire set up!
I suppose I should use this first post to set the tone and go into more detail about who I am and my life. I spend my days making bottles, changing diapers, acting like a fool to make my baby laugh, and cleaning up after my 5 year old...I mean 22 year old...boyfriend. I would love to say that I get to cook, I love to cook! Unfortunately, my man-child boyfriend doesn't enjoy anything that doesn't involve cheese, meat, or pasta. No fruits or veggies allowed! At least he enjoys brownies, cakes, and cookies. We love to spend our time together as a family. Family time includes listening to music, watching cartoons, watching movies, and playing video games. Yes, we're a bunch of kids.
My little siblings are also our best friends. They're 9, 5, and 2. We relate to them pretty well, and that should give everyone a little more insight on our personalities! =P My parents are pretty hilarious, and so are my boyfriend's. There's never a boring day here!
I hope everyone kind find something useful or things that they can relate to as I get more posts up!
-Bethany
P.S.
Check out mom's blog!
I suppose I should use this first post to set the tone and go into more detail about who I am and my life. I spend my days making bottles, changing diapers, acting like a fool to make my baby laugh, and cleaning up after my 5 year old...I mean 22 year old...boyfriend. I would love to say that I get to cook, I love to cook! Unfortunately, my man-child boyfriend doesn't enjoy anything that doesn't involve cheese, meat, or pasta. No fruits or veggies allowed! At least he enjoys brownies, cakes, and cookies. We love to spend our time together as a family. Family time includes listening to music, watching cartoons, watching movies, and playing video games. Yes, we're a bunch of kids.
My little siblings are also our best friends. They're 9, 5, and 2. We relate to them pretty well, and that should give everyone a little more insight on our personalities! =P My parents are pretty hilarious, and so are my boyfriend's. There's never a boring day here!
I hope everyone kind find something useful or things that they can relate to as I get more posts up!
-Bethany
P.S.
Check out mom's blog!
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