Milestones and Music Therapy!!

Posing with Lightning McQueen!

Life has been super busy these past couple of weeks. We've had plans almost every day, either with friends or appointments. It's been lots of fun. :)

Today, we had an appointment with the developmental specialist and she was lovely. I thought that I would have to drive to The Children's Hospital weekly for appointments, but we don't. The specialist will come out to our home and work with Adele. We are going to start with baby massage. She is trained in baby massage and I am interested in learning. What's great is that we can also do this with Brinley. She is still young enough to reap the rewards. She was pleased with what we are doing with little Adele right now, tummy time, working on her neck muscles and focusing on feedings and making sure that Adele is healthy and growing. She recommended that we put her on a breastfeeding pillow on her play mat, this will help with working on her muscles. She will reach for toys, hopefully and work on her neck strength. The other thing was to lay her on her side once in a while so that she can also work on her muscle tone. It's all about the tone.
I know that many babies (not all) with Down syndrome lay flat and don't kick or reach a lot until they build up some strength. Adele reaches and kicks. She's quite the mover and the shaker. She makes me smile.

Sleepy today :)
 

Tomorrow we start music therapy. I am excited to get going on introducing the girls to different instruments and sounds. Brinley loves music. She loves to dance. She hasn't been around any instruments but I have a feeling that she will enjoy it immensely.

Went from the couch onto my wooden toy :(
Mommy had a heart attack and wanted to barf!

Why music therapy is beneficial....

Brain Waves: Research has shown that music with a strong beat can stimulate brainwaves to resonate in sync with the beat, with faster beats bringing sharper concentration and more alert thinking, and a slower tempo promoting a calm, meditative state. Also, research has found that the change in brainwave activity levels that music can bring can also enable the brain to shift speeds more easily on its own as needed, which means that music can bring lasting benefits to your state of mind, even after you’ve stopped listening.

Breathing and Heart Rate: With alterations in brainwaves comes changes in other bodily functions. Those governed by the autonomic nervous system, such as breathing and heart rate can also be altered by the changes music can bring. This can mean slower breathing, slower heart rate, and an activation of the relaxation response, among other things. This is why music and music therapy can help counteract or prevent the damaging effects of chronic stress, greatly promoting not only relaxation, but health.

State of Mind: Music can also be used to bring a more positive state of mind, helping to keep depression and anxiety at bay. This can help prevent the stress response from wreaking havoc on the body, and can help keep creativity and optimism levels higher, bringing many other benefits.

Other Benefits: Music has also been found to bring many other benefits, such as lowering blood pressure (which can also reduce the risk of stroke and other health problems over time), boost immunity, ease muscle tension, and more. With so many benefits and such profound physical effects, it’s no surprise that so many are seeing music as an important tool to help the body in staying (or becoming) healthy.

Pudding made me feel better!

My friend Jenny, who I go to for advice, left a great comment on my last blog. She seems to always make me feel better and encourages me to just focus on Adele, who is just a little girl.

Jenny.....

Oh no, no, no!! Don't EVER do the Baby Center thing!! Nothing good comes from places like that! You don't need updates on what your kid should be doing. I say get off there right now!

Ok, so you already know that each child with Ds is different. They all do things on their own timeline. The range for meeting milestones for kids with Ds is so damn wide that there is no need to even go by it. Like for walking...They say anywhere between 17 months to 4 years old. So ya, wide range! Sitting is the same thing. I would venture to say most sit around their first Birthday. Some much sooner, some a little later. I think Russell was about 9 or 10 months. Walking was just after his second Birthday.
I will tell you this. The milestones will matter to you, because you're a Mom and you won't be able to help not worrying about it. But don't let it consume you. I was consumed by it. If I could go back in time it is the one thing I would change Krista. I would have just enjoyed the slower pace, not worried as much, and just relaxed. Because those milestones I once obsessed over, I can't even remember now when exactly he hit them. When exactly he did roll over, or sit, or crawl...I have to go back and look them up. Because they don't matter anymore. Anyway, so that's my long rambly advice. Don't let it consume you! Enjoy the pace.

Ah the vasectomy...lol...Damn you for not having one more kid! I remember being all excited for Brad's...Cause ya, I popped out five kids, three of which had his big ass head...*ahem*...So I was looking forward to his discomfort. I was very angry when the Doctor would not let me watch! I mean why did Brad get to watch every thing I had to go through but I couldn't watch this?! And this is the part you won't want your husband to read...I felt sooooo bad after Brad got it done. I have never seen anything swell up like that before or turn that color. It was almost horrifying! And if I knew it was going to be like that for him I would have just got my tubes tied. So be nice to him when he gets it done!! lol

Who needs a spoon??

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 15, I need to get to number 1! 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! :)

 

It's BOOKED......

Showing off my outfit!

Last night as James and I were laying in bed, we talked about when the girls will meet or should meet certain milestones. We talked about how we should start potty training with Brinley and also to be more consistent with the teeth brushing....not really a milestone, just something we were talking about! Who really needs baby teeth anyways?? ;) We talked about Brinley's speech and what words she already knows and hopefully soon she spits out some sentences soon.  Brinley understands everything we say and follows directions, but she doesn't have a huge vocabulary. I'm tired of Baby Centre updates telling me that my baby should be saying so many words and writing essays by 19 months. She's not there....we have mom, dad, juice, shoes, baby, sou sou, and a million words that we don't understand. She is stellar at jargon and we think it's awesome. I need to sit back and relax and breathe. I think she's smart or do we all think our kids are smart??? Maybe she's average...average is good, but then again, average doesn't get you into medical school. Am I really thinking about medical school? She doesn't need to go to medical school, just some kind of school. A school that she likes. A school that I like. A school close to home.

Tummy time is hard work!

Hmmm.....

Onto Adele.......I know that I've expressed my worries and concerns already but I do think a lot about when she will meet some milestones. I am optimistic right now because she did roll over at one month and three weeks and she did smile for the first time at two months. Those are two milestones that I can check off my checklist. I don't really have a checklist, like a written down list, but I have a mental checklist. I was reading the other day on one of the Down syndrome sites about when children meet certain milestones. One of the moms was concerned about when her child would sit up and when her child would walk. The average seemed to be around 16 months for sitting up unassisted and 2 to 2.5 for walking. Is this accurate?? I'm ok with this. I truly am. I think. I don't know if I am because I am not there quite yet. Will I get really frustrated? Will I get pissed off that it's taking so long? On the other hand, I will be so excited when she meets her milestones. When she sits up unassisted, when she walks, when she says mom. I will be excited.
I know that the spectrum is large but do children with Down syndrome generally meet milestones around the same time?
I don't like to google everything. I like to hear from the mommies and even daddies who read the blog. Do any daddies actually read my blog? Hmmmm......
I should stop talking about my boobs and stuff. :)

So tired of my mom taking my picture!

Anyways, last thought for the day. James is all booked for his vasectomy. It is all set for next Friday and I am sort of maybe going to enjoy it! ;) I remind him that I did shoot out two babies and both without epidurals. Well, I wanted epidurals but the first fell out and no time for the second. James takes pain well and never complains but I could see a little fear in his eyes when he was describing the procedure to me.
One of his first comments was "I don't own tight underwear."
Me - "You need tight underwear?"
James - "I need support."
Me - "Oh."

I'm so cute!

Doctor - "Do you own bike shorts."
James - "NO."
Doctor - Do you own Speedos?"
James - "NO."
Doctor - "I don't understand why in North America Speedos are not considered acceptable but men wear tight bike shorts."
James - ?????????

James - "Why is there a large bandage on your hand?"
Doctor - "Don't worry, it'll be healed by your procedure date."
James - Should I be worried? Should I book with somebody else?"
Doctor - "Don't worry."
James - ?????????

Krista - "I'm not going to lie, I'm kind of excited for your vasectomy. Not because of future action but because I want you to whine a little and need a pea bag."
James - "I understand."
Krista - "So, your scrotum might turn blue."
James - "Yes. The doctor touched me today. I guess I'm eligible for a vasectomy. He sees no complications."
Krista - ???????

Will post pictures next Friday. :) JUST KIDDING!!

A beautiful gift made by a dear friend. xo



**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 15, I need to get to number 1! 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! :)

 

 

 

Her Story....

My name is Chrissy and Krista is a dear friend of our family. Along with being Down syndrome awareness month, October is also Pregnancy and Infant Loss awareness month, and today, October 15, 2013 is the official day of remembrance so I want to share a little of our story. I have 4 beautiful children “at home” - that is how I answer when people ask how many children I have. They are 7, 4.5, 2 and 4.5mths. But I also have two beautiful babies in heaven, one I never got to hold or even see, and one I held and saw her beautiful face, despite her never taking a breath.

 

Katie, Morgan, Rachel and Liam

 

 

My first loss was in October 2005, a miscarriage at 14 weeks, it was devastating. We were so excited, had the nursery started and were dreaming of meeting our baby. I closed the door to the nursery, cried a lot of tears and tried again right away. Almost 1 year later I had our beautiful daughter Katie. I fell in love so deep I had no idea it was possible and I wanted to experience it again. When Katie was 10 months old we conceived again and we were thrilled. After an anxious pregnancy with Katie I was able to let go and enjoy, thinking we’d had our rough time and were now in the clear. For 26.5 weeks I was blissfully ignorant, and enjoyed my pregnancy. February 3, 2008 everything changed. I had some cramping and spotting, and couldn’t remember the last time I had felt babe move. I called my midwife and we met her at the hospital. I remember saying to Bryan “what will we do if they put me on bed rest”. I was in denial; I kept convincing myself that I felt the baby moving and everything would be ok.

 

 

 

Katie and Mommy

 

Many things happened over the next several hours, some things were very traumatic but the outcome was unchangeable, our daughter had died. I was crushed in every way possible. I had never known this kind of pain. I knew what it meant to hold my child in my arms, see her look at me, know me as her mother, and all that came after that. Mostly I knew the love, and that love had been growing for 26.5 weeks already and it was fierce. I was never going to get to do any of the things I had looked forward to. Two days later I gave birth to our 1lb 10oz baby girl and she was beautiful, but not in the ways a parent dreams about. It was obvious that there was something “wrong”, and testing confirmed it – our angel had Turner Syndrome. Turner Syndrome occurs when females have only 1 X chromosome, instead of the usual 2. Males have 1 X and 1 Y chromosome. Like other genetic abnormalities people with Turners can live long beautiful lives, but it also predisposes them to hosts of health issues. For Gabi there could not have been any other outcome as her “condition” could not support life. Had she been born alive the time we would have had with her would have been very brief. We had chosen not to have ultrasounds in our pregnancy, had we had any we would have known she was not developing normally, and may even have been advised to terminate the pregnancy.

 

 

 

Gabbi’s footprints

 
 

I feel we made the right choice, but sometimes I wonder if we were cowards, if we weren’t brave enough to make the decisions that would have been put to us….that it was just easier to leave it up to God. When Krista shared their initial testing results with us my heart just broke for them. I wished she wasn’t living the nightmare I had feared and avoided. I wasn’t sure how to support her; I knew what it meant to have a baby die but nothing about what she was dealing with. Shockingly though a part of me was jealous, and still is…why, because she gets to hold and raise her daughter. Talking with her made me question our decisions, ask “what if”? I wished I could be as brave as her. And I felt ashamed because I would be lying if I didn’t admit I am at times relieved that I am not raising a child with special needs, maybe God felt we weren’t strong enough to do so. Mostly though I do stand by our decisions, as our outcome wouldn’t have changed…maybe I would have gotten to gaze into her eyes as she looked back at me, maybe I could have told her I loved her and she would have heard it, but at what cost to us all?  

 

 

Gabi's candle

 

 

It will be six years in February since Gabi left us, and at times it hurts as much as the days everything was happening. I have 4 beautiful, healthy children whom I wouldn’t give up for the world, but I also would give anything to raise Gabrielle, special needs or not. Her conception and death may have been just a “series of events” in our lives but the impact she has had on us is forever. My husband always says that time doesn’t heal, it just gives you distance and perspective. That is certainly our experience. I used to adamantly answer that I was the mother of X number of children and include Gabi and our other lost baby in that number. At some point I gained some perspective, I didn’t have to mention then in every conversation to ensure they weren’t forgotten, and began replying with “X number of children at home”. I talk about Gabi very openly and if you come into our home she is there – her candle, with her name on it sits in our living room, her photograph and urn are in our bedroom. As a mental health nurse I see everyday the impact that trauma has on people, and how it affects them, losing children is traumatic. We need to support each other as women and mothers in all the trials of our lives, whether it is losing a baby, at any point in pregnancy, or raising a child with special needs, or just having a bad day. Celebrating the fun and happy times is the easy part…anyone can do that…not anyone can listen when we cry in pain, grief or frustration. Thank you for “awareness” months and days, and for people like Krista trying to bring awareness on a daily basis by sharing her story. And thank you for reading my story. Much Love, Chrissy

 

 

 

 



I am THANKFUL!

Day 14 of the 31 for 21 Challenge....
I don't have pictures of all my dear friends and relatives, but you know how much I love you!

What I am thankful for....

Brinley

 

 

Adele <3

 

 

Brinley

 

 

Adele

 

 

Brinley

 

 

Brinley

 

 

Adele's smile!

 

 

Adele's beauty

 

 

Beautiful Brinley

 

 

Sisterly love!

 

 

Brinley - 6 weeks old

 

 

Brinley, Adele, Danika and Ryder

 

 

My amazing husband!

 

 

Friends

 

 

Vacations with James

 

 

Momma





Kindergarten friends
The three of us in grade 9

 

 

Crazy times with friends!

 

 

Daddy

 

 

I am thankful



**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 16, I need to get to number 1! 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! :)

 

 

 

 

 

 

 

 

 

 

Happy Thanksgiving!

HAPPY TURKEY FARTS TO ALL MY CANADIAN FRIENDS!

 

 

 

 

HAPPY OTHER FARTS TO ALL MY AMERICAN FRIENDS!

 

 

 

HAPPY FISH AND CHIP FARTS TO MY FAMILY IN ENGLAND!

 

 

 

 

HAPPY WHATEVER FARTS YOU WANT, TO MY FRIENDS IN OTHER PARTS OF THE WORLD!

 

 

 

 

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 16, I need to get to number 1! 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! :)

Life is BEAUTIFUL!!

Driving to Kayben Farms!

Today we went to Kayben Farms by Okotoks. It's Halloween time!
There's a bouncy parachute type thing for the kids, crafts, wagon rides, animals, little go karts and much more. Brinley had fun and didn't pull limp baby today. So nice, what a treat.

Loves swinging!

It was packed today and we were the only two adults in the whole place wearing flip flops. We lost all of our shoes in the flood and just haven't thought about boots! I guess it's time to head to Payless and stock up since the snow has started to fly.

Adele posing with her dad! HA! HA! HA!

It's funny because those who are comfortable with themselves and who are confident people are the ones who come up to Adele and pay her compliments. Others stare and wonder why she has oxygen. I take no offense when people ask.
It's funny though because I explain that she is on oxygen because she was 5 weeks early. Is she also on oxygen because she has Down syndrome? I don't really know. I think so. She's super strong but super floppy, so I guess that's why she's on oxygen. I just don't think it's really necessary to say that she has Down syndrome. I don't think I need to tell people everything. Do I? I'm so new at this. I won't have to explain when she's older because people will see the Down syndrome. Her features will be more prominent. I think that as she gets older and if people stare, I will say something. If you have a question or concern, I would love to explain. Who knows, maybe nobody will even care. I also have to realize that people may stare because she will be so darn cute!!

Hmmmm....I worry myself with silly stuff. I don't need to explain anything to anybody. Here's my child, her name is Adele.

Enjoying all the sights at Kayben!

All smiles!

James and I had Adele in our bed last night after we put Brinley down. It was a moment of love. I love it when James cuddles with his girls. I love the look in his eyes when he talks about his girls. It's just magical. As we were laying in bed, he had his head on his pillow and Adele was right beside him, she was looking at him and he told her that he loved her so much. These moments are what I live for....these are the moments that take all the unhappy crap away. He looked at me and said how much he loves his family. It's such a beautiful life with these girls.

When I went out yesterday with the girls, that was around 12:45pm and as I was driving along Longview Trail, there were two little kids playing rather close to the road. I was concerned but I kept driving. It's a very busy road. The speed limit is 50 km/h but I know that most people go at least 60 km/h.
When I was coming home, I took the same road. It was around 4:00pm. The kids were still there, in the same place. There was a big rock in the road, as I passed it, the kids ran out to move the rock. So unsafe.
I turned the car around.
The little girl saw me and started to run. The little boy hid behind a tree. I guess I'm scary looking.
I rolled the window down and in my teacher voice I yelled "if you don't get back here right now, I will follow you home and talk to your mom. Get over here!"
There was a little hesitation. They came to the car.
I asked them what they were doing....they told me that they were just playing.
Ok, just playing beside a very busy road.
I asked them if their mom knew that they were playing over here?
Yup, they claimed that she was fully aware.
The kids apologized for being there. I'm pretty sure the boy peed his pants thinking that I was going to give them a whoopin.
I explained how dangerous it was and that I had two little girls in the car. What if I hit you? What if somebody else hit you?
Go home kids. I know that High River doesn't have too many parks right now because of the flood but you need to play in your front yard or find a park with your mom.

Yup, that's snow!

I can't wrap my head around what happened. As a mother, should you not be aware of where you elementary aged children are playing? Shouldn't you be with your children? This scares me. It scares me that there are parents out there and they just don't care. I wondered if a parent was actually home?? Don't do that to your children. Take proper care of them. It is your job.

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 16, I need to get to number 1! 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! :)

 

Friday Night at Wal-Mart.....

Always need my sunglasses on....upside down!

It was a busy day today.
I had a doctor's appointment, so the girls and I headed into the city. I needed to weigh Adele too as per the pediatrician. Adele didn't gain any weight the week after her release from the hospital. She was up today to almost 9 pounds. She's doing well. I am so OCD about her feedings, her poops and her breathing. As I have said before, I can't wait for her to get stronger and bigger.

After the doctor, I left with the girls, obviously, and we headed across the parking lot to the car. While I was carrying the car seat, the oxygen tank, my purse and I was holding Brinley's hand, she decided to do limp baby. ARE YOU KIDDING ME? I was parked at the other end of the parking lot and Brinley decided that she wanted to be funny and silly and she dropped, all 30 pounds and was dragging her feet. I then decided that because she is a smart little girl, I would be able to reason with her....it should work.
No movie if you don't walk.
No treats if you don't walk.
No going out tonight if you don't walk.
You can no longer call me mommy if you don't walk.
Your father is leaving us because he's embarrassed that you aren't walking properly.
You will never get a puppy if you don't walk.
You were adopted.
NOTHING WORKED!

Now, I'm pissed. GET UP! GET UP! GET UP!
A car is coming towards us! The car stops and the lady is laughing. HA! HA! HA! HA! HA!

Made it to the car and turned the movie on. She won! She's 19 months. I am 36!  It's a sad day.

Tried for hours to sit in the high chair :)

 

We made it home and decided to go out for dinner. We headed to Okotoks for some dinner and to run some errands.
While at the restaurant, the waitresses were excited to see Brinley and complimented her on her beautiful eyes and all her cuteness. One of the waitresses went over to see Adele and I heard her say "OH."
Now, I don't know if it's because of the oxygen or because she was sleeping or because she is so darn cute...I'm still unsure. It couldn't be because she has Down syndrome. You can't really tell right now that she has it....sometimes I see it and sometimes I don't. All I know is that you better tell me that my kid is cute and adorable after you compliment the other one. Do for both! If you read my post yesterday, I have thought more and more about how a child should look with Down Syndrome. Is there is a particular look? A Down syndrome look? When somebody says to you that your child doesn't look like they have Ds, is this saying that they are cute?? If they tell you that your child has a lot of Ds features, are they ugly? I'm unsure. Is it just a comment? Is it an insult? Are kids with Ds not very attractive or if the features aren't prominent and they look more 'normal', does that make them attractive? Cuteness comes in many forms, many colours, many races. I've seen many ugly people who are considered 'normal' and many children and adults who have Ds who are beautiful. It makes me sad how uneducated people are about certain genetics gifts. I think this is a subject that I could write about over and over again. I'm not too sure if anything that I just wrote makes sense. I may have just totally confused myself. :)

Who lets their child sleep like this? Cruel!

We went to Wal-Mart. Yes, that is what we now do on Friday nights. We slum it at Wal-Mart.
We wanted to get Brinley some winter boots. I can't justify spending 100 bucks on new boots when her feet are growing an inch every day!!
Our perfect child (except for limp baby), the one who gets told almost daily that she is so quiet and sweet and well behaved and that we are so lucky, decided to whine and whine because she wanted to get out of the cart.
We took her out and BAM, she was gone. Running through Wal-Mart and laughing. LA LA LA LA LA. James would catch her then she would whine, so he put her down again. AND......RUN!!! Laughing and running and weaving in and out of the racks.
I can't run. I just ate dinner. I would get diarrhea! James ran.
We decided to cut the shopping spree short.
Positive from the night...I controlled my spending.

I was carrying Brinley out of Wal Mart, sort of upside down and twisted with her belly hanging out and she was making crazy loud noises! Oh look!! There's our policeman friend, he's waving at me. I'm kind of glad that he was on his phone and dealing with an incident that had happened at Wal Mart. It's embarrassing when your perfect child is overtired and acting like a turd.
I looked down when we got to the car and noticed that my dress was pulled so far down that my bra was hanging out. My boobs aren't big enough to hang out, so that wasn't an issue.
I guess I fit in well tonight at Wal-Mart.

As we were driving home, I was making some good cracks and commenting to James that I'm pretty funny and other people think I'm funny too.
He burst my bubble and said that they don't have to live with me.
I stopped laughing.

Makes up for the limp baby!! :)

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 16, I need to get to number 1! 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! :)