Will Adele Have Friends?

 

BFFs

 

 

Lately, when I go out and something comes up about Down syndrome, all I hear is that it's a lot of work. It's life long. It's going to keep you busy. Make sure you get all of your funding. Always be your child's strongest advocate. Your child will probably live with you forever.

"You have a child with Down syndrome? I'm sorry." 
Don't we as parents all have worries when it comes to our children, Down syndrome or not?

I've read a lot of posts lately where moms and dads are so frustrated with their child's progress and that the child is hitting milestones way later then expected. I keep hearing a lot of upset and very discouraged parents.

It hurts when I read this. In my mind, I know that Adele will hit some of her milestones later and I have promised myself that I won't get upset if she isn't potty trained by 4. I won't be sad if she doesn't say mom until she's 3. I won't be sad if she isn't walking by 2. I won't be sad if she doesn't count to 3 until she's 3. Will I be discouraged even though I know what to expect? There are so many things that run through my mind and daily I try to convince myself that it will all be ok. It will all work out. It will be fine when milestones are hit much later.

I think one of my biggest worries is that will I be sad if she only has special needs friends? I would be sad. I know it.

 

Just pondering....

 

 

My sister sent me this link. :)

 

Study Suggests a Special Needs Child is the Most Important Friend Your Kid May Ever Make

Like many children, my son is friendly with the kids in his classroom. Unlike many children, those are his only friends.

Max has cerebral palsy and cognitive impairment, due to a stroke at birth; he attends a school for kids with special needs. The lack of typically-developing friends doesn't bother Max, who is not yet conscientious of it. It bothers me. Max is a super-friendly, fun kid who deserves lots of different friends-and lots of friends deserve him.

Of course, my friends' children hang with him when they visit. One of my best friends has arranged playdates with her daughter who's around Max's age, though she lives an hour away. The neighborhood kids are friendly when everyone's playing outside, but that's as far as it goes. Their moms have never reached out to me and vice versa, although I know I should take that first step. Friendship would benefit all our children, as a new study reveals.

A study of 1520 children ages 7 to 16 found that those who regularly interacted with people with disabilities generally had better attitudes toward people with special needs. They were less fearful of them, too, and more empathetic. Even just observing other people interact with those who had special needs, or observing their friendships, improved children's attitudes, shows the study by the University of Exeter Medical School in England.

These friendships could majorly benefit children with special needs like my son. They'd feel included instead of ostracized. It could boost their self-esteem, and even help them develop. It would open their worlds. Less obvious, I think, are the potential payoffs for children who don't have special needs. As study author Megan MacMillan said at the recent British Psychological Society conference, "The effort to improve attitudes is worthwhile, as negative attitudes are often internalized." Related: 7 things you should NEVER say to a kid
If your child doesn't ever interact with kids who have special needs, consider the benefits that go far beyond the usual gifts of friendship. Getting to know a child with special needs could open her mind so that she grows up to be more accepting and appreciative of individual differences. Having a "diverse" group of friends-important to many parents today-isn't just about kids of all races, it's about kids of all abilities, too. A friendship like this could also sharpen your child's communication skills, teaching her how to better interact with others. It could give her a deeper understanding of what it means to overcome challenges, and that everyone has their own unique value in this world.

I reached out to David Quilleon, a Vice President at Best Buddies International, to ask about benefits the nonprofit has seen for non-disabled friends (the group creates opportunities for one-on-one friendships for people with developmental and intellectual disabilities). As an answer, he shared a letter he'd received from a chapter that operates out of a middle school in Tennessee. It noted, "Our student volunteers learn about leadership, community service, and most importantly, they become advocates for their new friend to be afforded equal opportunities within the school culture."
A-men.

I think I speak for most moms of kids with special needs when I say we're not looking for pity playdates here. We're looking for genuine connections. Yes, it's going to take a little more effort on your part. You will most likely have to explain to your child why mine walks and talks differently than other kids. That said, you could also talk about the ways my child is the same to help bridge the gap-after all, kids with special needs are kids first. They like to play with toys, watch TV, eat ice-cream, listen to music, and tell knock-knock jokes - same as any other kid.

Perhaps you won't know exactly what to tell your child about my child. No worries there-feel free to ask. I most likely wouldn't have known what to say, either, before I had my son and became a first-hand expert on the topic. Parents of kids with special needs are not expecting you or your child to act perfectly. Perfection, as we we well know, is not reality.

Just think, think of all the good friendships like this could do. Then go ahead and encourage your child to approach a child with special needs at the playground-a simple "Hi!" is always a great ice-breaker. If you have a child in middle or high school, find out about local Best Buddies programs (they're nationwide), or look into the e-Buddies pen pal program for kids ages 10 and up.

You could also ask around at your kid's school, or in your neighborhood or social media circles, whether anyone knows of a mom of a child with special needs who'd like to arrange a playdate with your child. I know how grateful the mom would be, because I am that mom.
Image source: iPhoto/kali9

-By Ellen Seidman

 

http://www.topmommyblogs.com/directory/comments.php?id=Krista

 

You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. Right now I am in the Newest Blogs section but will be eventually be in the Special Needs section. You can vote and rank my blog. :) Click on badge, go to Newest Blogs, find mine and click on the cupcakes, then you'll know what to do. :) Or, click on the above link and it will take you right to my page. :) I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

 

BLESSINGS

 

A new friend sent me a message last night on Facebook. We connected while I was still pregnant with Adele. They found out late in the pregnancy that their precious little girl had a major brain bleed. Katelyn survived 8 days after having to go through surgeries and a lot of poking and prodding. I decided to put her message on the blog today, not to give myself props, but to remind others that life is so precious and that we all need to value and appreciate the time that we have with our children. It's about enjoying every moment even when you want to put them up for adoption or place an ad on Kijiji. It's also about appreciating and loving friends and family and telling those who you love that you love them. It's about not taking others for granted or for holding onto grudges and being bitter. It's about being thankful.

Hi Krista,

I just wanted to send you a little note to pass on my congratulations on the safe arrival of your beautiful Adele. She is precious beyond words...I want to scoop her right up through the computer screen. You are so blessed.
I have visited your blog a few times since you sent me the link when we were in the hospital with Katelyn. So much has changed for me since our precious time with her. I truly realize what a gift each day is. It is a beautiful new perspective.
Your strength and love for your children is awesome and inspiring. Both of your girls are so incredibly lucky to have you, and you them....they made a good choice picking you as their mama :) I know that you now know what it means to really appreciate life; even more than ever. Relish in it; there is no bigger gift.
I wish you nothing but the best as you venture forward on your journey with your beautiful family....may it be wonderful and full of life's sweetest moments.

Many blessings and baby cuddles

POOPS AND PUKES!

Bedtime Stories :)

Our first night at home, as you know was long. Nights two and three have been much better. We usually are waking Adele up for her feedings but she also lets us know that she's hungry. It was James' feed early this morning. I heard the alarm go off, then I kind of dozed back to sleep. I woke up probably an hour after that and wondered if she had been fed. James flew out of bed and I heard "I guess I fell back asleep." :)
I'm pretty sure she will survive being fed an hour late. We are still working on the poops. I honestly can't believe that my life revolves around bowel movements and spit ups. Adele has had four or five little poops, but no blow outs yet. I had a little chat with her last night and told her that I don't even mind if she destroys a sleeper, just take a huge dump.
I don't know if it's because she has lower muscle tone and pushing just isn't working or if it's because we switched formulas. In the hospital, they were giving her Sim 24, then they decided to switch her to the normal Similac because her weight gain was stellar.
We do have an appointment at the end of next week with the pediatrician, so we will check, but hopefully by then, she will have taken great big poops!!
My other, sort of concern is that she has had regurged three times since being at home. This is all so foreign to me because Brinley never had an issue with regurgitation, just a couple spit ups and that was it....am I just paranoid? :) Adele is not a big burper, just a huge tooter, so this may contribute to a full belly with some air and it needs to come out.

POOP!!! LET'S POOP!!!

I know that I need to relax and enjoy all of this baby time, but I have to be honest, I stare at her face and over analyze her colour. Oh, I think she looks pale. Oh, I think we should just check to make sure that her oxygen is working. Oh, let's do some bicycling and get those bowels going. Oh, let's give her a warm bath and get her to poop. Oh, it's been almost four hours, let's get feeding! Maybe this is why my bowels are all screwy right now, cause I need to relax a little more.
I deeply miss the NICU but am so glad that we are home. I would like a nurse to come by every so often and do a full assessment on Adele.....yes, that would be perfect!! I miss those damn machines that I spent way too much time staring at and every time I heard an alarm, I would check to see if it was her machine. They were great but I relied on them way too much.
I also can't stand the oxygen and the very heavy machine, but I love the oxygen. It's a pain but it also makes us feel better to know that she is getting a little bit of help right now. It does make me feel more at ease, a little bit of oxygen sure goes a long way. I sound like I'm so confused....when I re-read the blog, I jump from one thing to another, I like something, I don't like something, I worry about something. I think I need rum and a beach!

Back to the love....Since James read the last post about how we got into bed and rolled over and went to sleep, he has been more affectionate. He is already affectionate but he seems to be trying even harder, Now, I don't know if your partner shows affection by hugging and kissing.....James does that but also other things that I won't post. He is such a man. I get all frustrated and tell him to back off but I am also laughing and giggling because he's so funny. He truly is a loving and supportive husband. He just drives me nuts!! ;)

Topless feeding! :)

Brinley has done pretty good so far with welcoming her sister into her life. Brinley gets a whole lot of love and now she needs to share it with Adele. She tries to feed her and loves to touch her face and tummy. She has given her some kisses too but will only do this when it is convenient for her and her very busy schedule. I truly see best friends in the making. We are looking forward to when Adele is a bit older and they interact with each other. I'm still processing that we have two children. We have two kids. It's crazy!!

Thank you for all of the feedback and advice. I love it! It has answered some of our questions and concerns. I love my friends! :)

You may have noticed that I now have some advertising on my blog. I have managed to block the liquor and criminal ads, hopefully this doesn't disappoint my readers who are currently on death row. I am still working on blocking some ads but have managed to block 50 categories so far. I am hoping that the ads will be more tailored to fit the theme of the blog. Please feel free to click on the ads as it would be great to pay off some bills. :)

Have a great Saturday! I think it's Saturday! :)

HOME TIME AND YAWN!

Home Time!

Yesterday, September 4th, 2013, after 42 days in the NICU, Adele came home. Well, sort of home. Back to grandma and grandpa's cause we still don't have a home ready for the four of us. Soon. :)

We were so excited yesterday. It was kind of like the feeling when you're told you are going to Disneyland. The tummy turning, the giddy, the vomit like feeling, dizzy, the feeling of being unorganized although you just spent 9 months getting ready and planning. It was a lot of emotions all rolled up into one.
We thought we were kind of ready, sort of, I guess. I don't know, I can barely keep my eyes open right now. :)

Adele's NG tube was taken out the night of September 3rd, we were totally shocked. Again, the feeling of the unknown was upon us. Will we have to put it back in again? Will she surprise us and feed like a champ? It sucks when you have to worry about how your baby is feeding and how much and what's too little. We sound like morons trying to wake her up sometimes, encouraging her to eat. It's actually pretty funny! Grandma sounds hilarious when she's feeding Adele....over and over again you hear "come on baby, come on Adele. ADELE! Come on baby, come on Adele, come on honey. ADELE!" It's awesome!

We got home around 2:00pm yesterday and Auntie, Uncle, Danika and Ryder were here shortly after, ready and so excited to hold Adele. Uncle Bob was first as he has been waiting 42 days to hold his niece. Ryder kept asking for snuggles and Danika brought over some pretty cute decorations to welcome her cousin home.

The day went smoothly. Adele ate and I wasn't tired....yet.

We fed Adele at around 10:00pm, by this time, I was tired but not from working too hard, just because it was long passed my bedtime. Put Adele down and set the alarm for 2:00am. We figured if she was hungry before that time, she would let us know. Get into bed.  Usually mommy and daddy kiss each other and say "I love you!" Last night, we turned our backs and THOUGHT it was bed time. Is the romance already gone on night one? What will happen in a week? Will I forget his name? Will we no longer share a bed? Will I wear pyjamas to bed because I feel like I'm sleeping with a stranger? This isn't looking good!
Ok Adele, you can fall asleep now.
Ok Adele, it's midnight, momma and daddy are tired.
Ok Adele, it's 2:00am, well, I guess we will sleep after this feed.
Ok Adele, it's 3:00am.....momma says to daddy "do you think they would take her back in the NICU? Maybe we could hire a night nurse."
Ok Adele, it's 4:00am and if you weren't so cute, I would put you on Kijiji right now.
Ok Adele, it's 5:00am, well I guess we will sleep after this feed.
Sleep.
Wait, we have another child who will be up in two hours. I want to go to the corner of the room and curl up into the fetal position and rock back and forth, back and forth.

7:50am....hmmm....I wonder how long Brinley has been awake waiting for us?!?!? Yawn, stretch, I feel so refreshed. NO I DON'T!! I'm old, I'm too old to have newborn. I need a Jolt, I need coffee with an extra four shots of happy in it, I need an energy drink. How am I going to do this for the next, oh, let's be positive and optimistic.....let's say a year?!?!?

Let's just nap when the girls nap. Hang on, the feeding schedule at this point doesn't really correlate with Brinley's napping schedule. These two better have a little chat with each other and set up a plan that is conducive to mommy's sleeping schedule.

SIGH

Adele needs to poop. She has been straining since last night, not consistently but wants to poop. She is gassy too. How long is normal without a poop? When do we get concerned? I forget all of this stuff, probably because I was so flippin tired!

Damn, I just realized that as I was writing the blog, I had the chair on her oxygen line. Poor thing was having to work all on her own because her momma wasn't watching. I am so freakin tired. We're good, she's a nice pink colour. :)

I can hear all of you saying "it's only day one, how will she cope?" She has a lifetime of no sleep coming her way. I don't want to hear it. I'm tired. I forgot to drink and eat today. I have already let myself go. I didn't brush my teeth or shower until 2:00pm. I felt dirty.

Please don't think that we don't love our babies. We love them more than anything. I just feel that I would love a tiny bit more if there was a schedule that worked with my lifestyle.....like around when I need some sleep and when I eat breakfast, lunch and dinner. I think I now understand why Heidi Klum has one nanny per child. I made fun of her. I accused her of having too much money and for flaunting it. I now fully support her and would like to be friends. I think having a nanny is a splendid idea. :)

Anyways, last thought. It was Brinley's 18 month birthday yesterday. :) Although she enjoys getting a little aggressive with her sister and probably is ready for her to go back where she came from, we love her to pieces. :) We aren't going to tell her that Adele is going to be hanging around for a while. :)

Are You Ready To Be A Parent :)

Car seat test results - All you need to know is STELLAR!

Today was a pretty great day. Adele passed her car seat test with flying colours! That little tiny bit of oxygen sure goes a long way. I knew that she would pass.
Tomorrow, Adele has an appointment at The Children's Hospital with the ear, nose and throat specialist. This is our last hurdle right now. I know that he will look up her nose and maybe all the way down into her belly to see if she has any obstructions. My personal opinion, is that this is who she is....she is a bit floppy, she has weaker muscle tone and she just needs some time to mature. Adele is very positional and when her airway is open and her neck is supported, her breathing is normal.
James and I will go to the hospital in the morning and have some snuggles, then Adele will be transported by ambulance and mommy and daddy will follow along and be there for the appointment. This is her first outing, so she needs us there to give her some love and support.
As long as tomorrow goes well, Adele will be coming home on Wednesday. It will be a lot for her, so it will be better to have some monitoring after the appointment just to make sure that she keeps her levels up. She doesn't need the stress of another car ride.

The nurses and doctors have informed us to keep visitors away or just have a couple as she gets worn out easily. Also, if anybody has sniffles, no visits. Maybe I should set up a hand washing station, gown station and mask station. That sounds perfect!!! :)
We definitely don't want our peanut getting sick. We may just stick with immediate family for a little while until we know that she is a bit stronger.

Perfection

Tonight, I had this sinking, kind of sick feeling in the pit of my stomach. I realized that Adele is probably coming home in a couple of days. I had a minor freak out and needed to breathe. It was kind of like the same fear when you go into labour and realize what's about to come shooting out...that kind of fear. The type of fear that a bottle of rum could help fix. The type of fear right before you jump out of a plane and wonder if your chute will actually open. The type of fear when you wonder after you jump off of the bridge if your bungee cord is too long. The type of fear when...I'm going to keep this one to myself cause it involves family members and I don't want to upset anybody, but I am laughing right now. :)
Anyways, I am actually really scared to be bringing Adele home. I may not sleep again for a really long time. I am worried about nights. Adele is not a crier, so I guess we will have to set the alarm for every 3 hours. Wait, will they change the time? Will they change the amount of formula? I know that it's based on weight...is there a weight/feeding schedule? These are just a couple of my worries.
Since I'm on a roll....
I know that I need to call some people and some people need to call me. I forget who I need to call. I forget who will call me. Who decides when she comes off of oxygen? Who decides when the NG tube comes out? AHHHHHHH.......
I totally feel like my head is spinning. My tummy hurts!
Is her play pen safe? Is it hard enough? Is it too hard? Will she be ok in a bouncy chair?

I honestly never thought of most of these things with Brinley. I am a bit worried and scared about having Adele home. I can hear some of you saying that I need to take it one day at a time...one day at a time. I know.

Let's have some funny.....

Ok...next. So yesterday while I was snuggling with Adele, I noticed a young, pretty, new mom in the room next to me. I glanced behind me and noticed that she was pumping her rather large and perfect boobs. I texted James and told him that he seriously missed out on a good snuggling day. He asked for a picture. Whatever James!!! :)

Another funny moment....some new grandparents were in visiting their new grandchild and Adele let out the loudest and wettest shart. It was so loud that I actually jumped. I don't get embarrassed very easily, but I didn't even know what to say. The grandparents glanced over and all I could say was "ADELE!" This kid is the craziest pooper and tooter. I love her!

Love this!!!

The Test For Future Parents by author Colin Falconer comprises 14 steps to follow before you have children and was originally printed in his book 'A beginners guide to fatherhood' in 1992 before finding its was on to parenting blogs in the UK, most recently Mamami by Chet, who was sent the parenting test by a friend.

 

'Most people will tell you that "it" is the hardest, most rewarding, rollercoaster job you will ever have - there's no pay, you are on duty 24/7 and, at times, it seems like there are few rewards.

'Being a parent has its ups and downs. I wouldn't change my title as "mummy" for anything in the world, however when this came through my inbox from a great friend it made me laugh (a lot!)'
If you think you are ready to embrace the joys of motherhood, we have printed the 14 tests here to see if you are really up to the challenge...

Test 1: Preparation

Women: To prepare for pregnancy

1. Put on a dressing gown and stick a beanbag down the front.
2. Leave it there.
3. After 9 months remove 5% of the beans.

Men: To prepare for children

1. Go to a local chemist, tip the contents of your wallet onto the counter and tell the pharmacist to help himself
2. Go to the supermarket. Arrange to have your salary paid directly to their head office.
3. Go home. Pick up the newspaper and read it for the last time.

 

Test 2: Knowledge
Find a couple who are already parents and berate them about their methods of discipline, lack of patience, appallingly low tolerance levels and how they have allowed their children to run wild.
Suggest ways in which they might improve their child's sleeping habits, toilet training, table manners and overall behaviour.
Enjoy it. It will be the last time in your life that you will have all the answers.

Test 3: Nights

To discover how the nights will feel:

 

1. Walk around the living room from 5pm to 10pm carrying a wet bag weighing approximately 4 - 6kg, with a radio turned to static (or some other obnoxious sound) playing loudly.
2.  At 10pm, put the bag down, set the alarm for midnight and go to sleep.
3. Get up at 11pm and walk the bag around the living room until 1am.
4. Set the alarm for 3am.
5. As you can't get back to sleep, get up at 2am and make a cup of tea.
6. Go to bed at 2.45am.
7. Get up again at 3am when the alarm goes off.
8. Sing songs in the dark until 4am.
9. Put the alarm on for 5am. Get up when it goes off.
10. Make breakfast.
Keep this up for 5 years. LOOK CHEERFUL.

Test 4: Dressing Small Children
1. Buy a live octopus and a string bag.
2. Attempt to put the octopus into the string bag so that no arms hangout.
Time Allowed: 5 minutes.

Test 5: Cars

1. Forget the BMW. Buy a practical 5-door wagon.
2. Buy a chocolate ice cream cone and put it in the glove compartment. Leave it there.
3. Get a coin. Insert it into the CD player.
4. Take a box of chocolate biscuits; mash them into the back seat.
5. Run a garden rake along both sides of the car.


Test 6: Going for a walk

 

a. Wait.
b. Go out the front door.
c. Come back in again.
d. Go out.
e. Come back in again.
f. Go out again.
g. Walk down the front path.
h. Walk back up it.
i. Walk down it again.
j. Walk very slowly down the road for five minutes.
k. Stop, inspect minutely and ask at least 6 questions about every piece of used chewing gum, dirty tissue and dead insect along the way.
l. Retrace your steps.
m. Scream that you have had as much as you can stand until the neighbours come out and stare at you.
n. Give up and go back into the house.
You are now just about ready to try taking a small child for a walk.

Test 7: Conversations with children
Repeat everything you say at least 5 times.

Test 8: Grocery Shopping
1. Go to the local supermarket. Take with you the nearest thing you can find to a pre-school child - a fully grown goat is excellent. If you intend to have more than one child, take more than one goat.
2. Buy your weekly groceries without letting the goat(s) out of your sight.
3. Pay for everything the goat eats or destroys.
Until you can easily accomplish this, do not even contemplate having children.

Test 9: Feeding a 1 year-old

1. Hollow out a melon
2. Make a small hole in the side
3. Suspend the melon from the ceiling and swing it side to side
4. Now get a bowl of soggy cornflakes and attempt to spoon them into the swaying melon while pretending to be an aeroplane.
5. Continue until half the cornflakes are gone.
6. Tip the rest into your lap, making sure that a lot of it falls on the floor.

Test 10: TV
1. Learn the names of every character from the Wiggles, Barney, Teletubbies and Disney.
2. Watch nothing else on television for at least 5 years.

Test 11: Mess
Can you stand the mess children make? To find out:

 

1. Smear peanut butter onto the sofa and jam onto the curtains
2. Hide a fish behind the stereo and leave it there all summer.
3. Stick your fingers in the flowerbeds and then rub them on clean walls. Cover the stains with crayon. How does that look?
4. Empty every drawer/cupboard/storage box in your house onto the floor and proceed with step 5.
5. Drag randomly items from one room to another room and leave them there.


Test 12: Long Trips with Toddlers
1. Make a recording of someone shouting 'Mummy' repeatedly. Important Notes: No more than a 4 second delay between each Mummy. Include occasional crescendo to the level of a supersonic jet.
2. Play this tape in your car, everywhere you go for the next 4 years.
You are now ready to take a long trip with a toddler.

Test 13: Conversations
1. Start talking to an adult of your choice.
2. Have someone else continually tug on your shirt hem or shirt sleeve while playing the Mummy tape listed above.
You are now ready to have a conversation with an adult while there is a child in the room.

Test 14: Getting ready for work
1. Pick a day on which you have an important meeting.
2. Put on your finest work attire.
3. Take a cup of cream and put 1 cup of lemon juice in it
4. Stir
5. Dump half of it on your nice silk shirt
6. Saturate a towel with the other half of the mixture
7. Attempt to clean your shirt with the same saturated towel
8. Do not change (you have no time).
9. Go directly to work
You are now ready to have children. ENJOY!!

Dear Brinley and Adele....

My Babies :)

Today was a pretty great day. I had a few hours of snuggles and Adele's breathing was not as laboured. I guess earlier on in the day, she was having some troubles again so they decided to book her in at The Children's Hospital on Tuesday, with the ear, throat and nose specialist. They will put her in a little incubator and head off in the ambulance for a visit with the doctor. I asked James if he could go to that appointment..mommy doesn't want to go, I want to hang with Brinley for a while. I can visit later on that day.
She had a repeat x-ray, it looked pretty good except for the NG tube which was in too far. Who's the crap nurse who can't do her job properly?? Oh wait, I inserted that tube. It looked like a fish hook on the x-ray, I giggled. It could be pulled out an inch or so but I'm guessing they will leave it alone.
The nurse practitioner was pleased with the x-ray but was going to discuss it with the doctor. The swab results came back negative, they are just waiting for one more test, then she should be allowed out of isolation. The nurse was going to ask the doctor if she could come out sooner....here's hoping. I asked for a room with a view. Our little peanut needs a little sunlight. I can't wait for the day when we can sit on the deck with Adele and Brinley and let our little one see the sun and breathe in some fresh air.
James headed to the hospital for some night snuggles and he took the car seat back with him as we are really hoping that we can return the car bed and leave with her in her car seat. I'm thinking that because she is on oxygen for a while, she may just be fine. Fingers crossed.

Sisters :)

I was having a mommy thought about the future when I was driving home from the hospital today. I thought about social media, role models, Miley Cyrus and decided that it was time to write my little girls a letter.....

Dear Brinley and Adele,

I'd like to start off this letter by telling you that mommy and daddy love you to pieces. You came into this world as naive, vulnerable and beautiful little girls. We, as your parents would like to keep safe and protected all throughout your life, but we know that at some point, you will be making your own decisions. We pray that what we have taught you will resonate with you and that you remember to make good choices that show respect for yourself and others.

Mommy and daddy think that we are fairly cool and not too strict, well maybe a bit strict when it comes to certain things, but we believe in having a good time and laughing lots. I have a few suggestions for the both of you. You may think they are rules but I consider them suggestions that you really should follow in order to make mommy and daddy happy!

#1 – I would like to start off with role models and what defines a role model. As I was watching Miley Cyrus twerk on Robin Thicke, I had this epiphany. She is no longer Hannah Montana. Twerking is gross and that is that. If I see you girls twerking up on somebody, boy or girl, mommy will gather up the family and we will take you to a very public place and twerk on strangers while you cringe and cry and regret that you thought twerking made you look cool.  It is cheap and disgusting and I gag. You will choose role models who inspire you to become a better person. You will choose people who have made a significant, positive difference in this world.

#2 – I don’t know what technology will look like in 10 years but I am telling you that you will not own a cell phone while you are in elementary school. You may have some sort of device that only calls mommy and daddy but that is it! You cannot earn one by doing chores or by being kind to each other. It’s not going to happen. You will not have a Facebook account, a Twitter account or a MySpace account. You are too young. There is no negotiating. When we feel that you are ready, you need to prove to us that you are mature enough and realize that there are certain responsibilities that come with the social media world. 

#3 – You will not date in elementary or junior high school. You will not go on first, second or third base….again, you will not twerk! Mommy and auntie weren’t allowed to date until we were 16 and that rule was followed or grandpa would have given us a serious whoopin. J There is no need to date before this age. You are permitted to have friends who are boys but you will not date. You need to enjoy these years, play with your friends, laugh, enjoy. If I find out that you have broken this rule, I will lock you in your room for a long, long time and let you think about your poor decision. I will then extend the dating age to 18. I know people who know people…I will know if you break this rule.

#4 – You will not leave the house in one outfit then change at school. I will find out and you will regret it. I will not allow you to pick out your own clothes for a very long time and I will chaperone you to school and check on you periodically throughout the day. You will also be given a school uniform. Mommy’s choice! Respect your body. Dressing provocatively is not classy or sexy. When you dress like a young, respectable young lady, you look beautiful and attract positive attention. When you respect yourself, others will also respect you.

#5 – You will have chores. You will do your chores. Don’t expect to be paid. We pay for your food, your clothes, your transportation, your education and the roof that is over your head. If mommy and daddy choose to give you an allowance, be happy with what you get because if you ever complain, you won’t see a dime for a very long time. We will even take your tooth fairy money.

#6 – Mommy and daddy are funny! We will tell jokes in front of your friends and you will laugh. Don’t be embarrassed, we could be twerking instead of telling jokes.

#7 – You will go to school. You will graduate. You will do something productive with your life. Do we expect you to go to university? No. We expect you to be productive members of society. If you choose to not attend a post-secondary institution, mommy and daddy will buy a vacation property with all of the money that we put away just for you….. J

#8 – You will use your manners with everybody you encounter. Not everybody will be nice to you. Not everybody will use their manners. When you go out with your friends, some of them will swear and won’t say please and thank you. You are not too good. You are not above other people. You will be polite to others and you will make mommy and daddy proud.

#9 – When mommy and daddy are old and we lose our memory and pee our pants, you will change our diapers because we changed yours…if you choose to pass this duty onto others, you will lose your inheritance.

#10 – Mommy and daddy want you to know that you can always come and talk to us. We will always support you and love you unconditionally. We will watch you play sports, come to your school activities, listen to you play the piano, watch you during ballet class and cheer you on when you need it most. We will encourage you to be the best person that you can be, that doesn’t mean a straight ‘A’ report card, that means that you tried. We will have your back but when you make a mistake, you must take full responsibility and make things right. We expect you to be honest with us, your friends, your family and your teachers.  Above all, know that you are loved. Xo

Love,
Mommy and Daddy

TUESDAY???

Adele :)

Yesterday, I spent most of the day with Adele. The nurse practitioner went over all of Adele's results with me and I truly appreciated that she took her time to explain the tests. We discussed the x-rays, the echos and the blood tests. I saw all of the results and I could see that the right lung, in the upper lobe has a bit of white cloudiness, which means either pneumonia or perhaps a partial collapse. A repeat x-ray is scheduled for tomorrow and I am hoping that it is all clear. If the doctors still see the damage, she may order a round of antibiotics. I am ok with her getting some medication but then I worry about a yeast infection. Good lord.....one thing, another thing and another thing.

I am smiling in this picture...I promise! :)

Adele is back in isolation because she had a nose swab done yesterday. I can't stand isolation, it's all about me. I am too much of a heater to wear a mask, gloves and a gown. The nurse practitioner told me today that the swab was either dropped on the ground or it wasn't sealed properly. My first comment "do I need to wear this gown again for another 48 hours?"
Thank god the results should be back tomorrow. I love that they are very pro active and are covering all of their bases before Adele is allowed to come home. We are thinking Tuesday now. We purchased the car bed, so we took the car seat home. Now, we are being told that she may go home in the car seat. I try so hard to be flexible and I want to be flexible, but I am also black and white, grey doesn't work for me. I know that our sweet peanut is very unpredictable, but come on Adele, let's get moving!! :)

My last post talked about my uncertainty of having Adele and if it was the right choice...more so if it was fair to her....do you put your babies through all of the pokes and prodding? You think of the future and come up with all of these whacky ideas of how Adele's life will be....it was a tough day. I felt so bad for her and was upset and my emotions were running wild. I received a whole lot of support from friends and the messages that were sent just confirmed that we did make the right choice. It might be difficult sometimes for Adele but it's also going to be difficult sometimes for Brinley. We don't know what the future holds, but what we do know is that these two girls have so much love and support and that is unconditional.
One of my dear friends sent me a message. She has helped me get through this journey and I know that she's good because she is number 14 in the top blog category for Down syndrome. It's like she's famous!! I'm still hoping to make that list! ;)

I just read your last post. Damn you for making me cry first thing in the morning!! Krista, you made the right choice in having little Adele. Things are tough right now, but they won't always be like this. She is going to have an awesome life. And everyone struggles in life, not just people with Ds. Everyone has struggles specifically their own. Adele will have her own now and then, but struggles, challenges, obstacles, do not make a life not worth living. Never question your choice to bring her into this world. She was meant to be. You and your girl were meant to take this path together. You Made The Right Choice.
Alright. Enough mooshyness first thing in the morning. Sending you much love. Stay strong, you will get through this rough patch.

My heart feels pretty good right now. My mind feels pretty good.

I went to the OB today for a check up. I knew that it wouldn't be invasive as I am not breast feeding, so things are not quite right down there at this moment. Now, if you want to make a comment on the breast feeding, DON'T...I don't want to hear it. My boobs don't work. I don't feel like a failure. I refuse to pump every 2 hours to get 10 mls of milk. I refuse to overdose on milk producing drugs again. I told the nurses that having a lactation consultant talk to me about the importance of breast feeding would result in a very tense conversation with possible violence. Funny thing, I've been in the clear up to this point. One of my closest friends Katie, is certified as a consultant and she told me with Brinley that you do what you want to do and what works for you and your family. Formula is feeding her belly. She is getting lots of nutrients. She is gaining lots of weight. The only problem, her butt stinks so bad. The nurse told me today that they have taken her dirty diaper to the other side of the NICU just to piss off a nurse! HA!! HA!! HA!! I love it!
The OB asked me what we would be doing for contraception.....I almost laughed. Right now, abstinence is what we are practicing. It seems to be working so far with not getting pregnant again. I told her that before any action starts up, James will need the snip snip, as well, seven or eight other forms of contraception will be in place. She recommended Mirena. Any input??? I am so scared. Those little swimmers need to die!

Today has been a good day. I don't feel like crying, which is a great thing. I don't like to be weak and cry. I feel like I should be strong and prove to people that I can do this and I can handle all of these ups and downs. On the other hand, I like sharing my vulnerable side and letting others know that sometimes I need advice and help. Sometimes I need a shoulder to cry on and sometimes I need to yell and scream and vent. I guess I can't always be strong.

Mom, put this on me! TAKE IT OFF! TAKE IT OFF!!

One more thing....I have a new friend Christina who is a very busy mom, but always checks in, every single day and who has been a great support since Adele was born. Our kiddies are the exact same age and we live only minutes away from each other. I get to be me when I am chatting with her...it's nice cause for those of you who know me, that can be scary.

Happy Thursday! :)