hot pants and ankle boots

In the late summer while Ola was having a visit from her physiotherapist a conversation came up about therapeutic "hot pants" and that they might be beneficial to help Ola control her hips and prevent her from splaying ler legs outwards. Her butt-scoot was not applauded either and this would help discourage it. We left the subject alone for the rest of the visit, but everytime Ola was almost doing the splits the little pants kept creeping into my mind.

I like to consider myself pro-active when it comes to Ola's therapy, I like to be one step ahead. I asked Physio to bring a pair to Ola's next visit. We put them on her and she was not a happy camper. She was miserable, her little legs unable to split, and her trademark butt scoot was was hobbled.

I couldn't stand to see her unhappy, I took the pants off 5 minutes after her therapist left and I put them in her sock drawer.

As the months wore on, I tried Ola in the pants a few more times before quickly giving into her whimpers of annoyance. I gave up... No more pants.

By late November with her scoot still in full swing I noticed it was becoming quicker and she was using so much force with every heel pull that she was just about pulling straight through into the splits into a face plant.

I pulled out the pants, and she whined... but only for a few minutes.

Ola has 3 pairs of "hot pants" now, and wears them everyday. She doesn't mind them, and they are doing a world of good for her leg strength.

We are still trying to get her up on her feet and off her toosh so Ola is now also wearing plastic ankle braces in her little booties everyday.

Ola sporting the original red "hot pants" the ankle braces are there too, they are just hiding under her Robeez so she can't rip off the velcro.

Wait... what did you think this post was going to be about?

Oh! get your mind out of the gutter!




Linking up again with Yeah Write!

any time is a good time for advocacy

On October 28th 2011 Ola went to our local hospital to have tubes put in her ears, it wasn't a really big deal, I was a little but nervous, handing her over to the doctors was a little bit upsetting, but watching her struggle to succumb to the anaesthetic was the worst.

I walked back to her room, impressed with myself that I didn't cry, and pretty much as soon as Mark snapped this lovely oh so flattering photo the nurse was back to take me to recovery to be with her.

When I was sitting in recovery with Ola I was busy chatting with a really friendly nurse about Ds. I can't remember how the conversation started but she asked me why Ola didn't have any teeth yet. When I started to explain to her that children with Ds usually get their teeth anywhere between 18-24 months and in random order she was really surprised, she had no idea. It kind of surprised me in the moment that a nurse wouldn't have any idea about this, but then she can't possibly know everything about every syndrome can she? She just needs the basic information about the patient she is dealing with, not all the fine details.

It took a about an hour in recovery for Ola to stop crying, and then we hitched a ride with a porter back to her room where she cuddled with Daddy.

I told Mark about our conversation, and as Ola sat with him still groggy and cranky from her surgery we talked about how any time is a good time to be a Ds advocate. There are so many opportunities in a day to spread awareness, you just need to get the conversation started.

I decided then and there how I was going to celebrate National Down syndrome Awareness week in Canada.

On November 7th the last day of Ds Awareness week I got a tattoo.

It has taken me a long time to write this post because this tattoo means so much to me. I have a few other tattoos that all have special meanings to me to, but this one... this one is different.

When I was deciding on how I could promote Ds awareness through a tattoo I decided that I would get a modified version of the Canadian Down Syndrome Societies logo. I am Canadian, and Ds was the purpose so it was a perfect fit.

I didn't want a carbon copy of the logo and gave my tattoo artist some ideas to work with like the heart, but I wanted the basic message still there.

It was a easy decision for me to get it placed in an obvious easily seen spot, the whole idea is for people to see it, ask about it, and then I can talk about it. I love talking about my beautiful Ola and her fabulous friends!

The other day (when the snow wasn't dumping!) I had the sleeves of my sweater rolled up in the grocery store and the cashier commented on my tattoo. Perfect, the conversation started and she learned that Ola:

a) had Ds (she said she had no idea)
b) that she was 20 months old (and still so little)
c) that she isn't walking yet, because of loose stretchy tendons, but that she's a bum scooter (bum scooter info courtesy of big sister Poppy)
d) that the symbol of my tattoo is for the Canadian Down Syndrome Society.

Mission accomplished I say.

There are abundant opportunities to get the awareness and advocate conversation started, you just have to start them.

I could talk about Ola all day long!

ahhh progress, you sweet thing

Ola started trying to self feed a little bit ago, but I thought today maybe I would grab the camera. 

We have made big progress in the food department lately. Going from formula and cereal (mixed with amounts of very smooth and runny fruits and veggies) to bowls of little noodles in pasta sauce, pieces of grapes, smashed avocado, banana in her little chewy bag thing, and bits and pieces of whatever we are eating at the time. She has tried chicken, ham, ice cream, whipped cream, crackers and I am sure there are more but I can't think of any right now. I try to give her anything we are eating so she is exposed to everything that we eat. Knock on wood, but I think we have avoided the dreaded texture issues!

Ola also gives high fives! Getting one is awesome, it instantly makes you smile!

She is now also saying DaDa, and I know she is because she says it loud and proud just to Mark when she sees him. With him travelling so much it is so nice to see him get such a warm welcome home.

She is starting to do different things each day, but don't get it twisted, this girl will do anything for her bottle!

New Beginnings

I have been composing this blog post for just over three weeks now, changing my mind daily on how I would explain the last month, trying to decide on how to word things. Instead of a well composed story, I am winging it. I am still a little unsure... but here we go.

A week and a half before my scheduled induction I had to call an ambulance in the middle of the night to take Mark to the hospital for severe abdominal pain. When he woke me up that night I was so confused, I thought I had woken him to take me to the hospital. I arrived to the hospital about an hour after Mark got there. Mom had to make her way out to our place. She had some technical difficulties of her own that night, with my Dad thinking I had gone into labour even though she explained to him that Mark had the problem, and then having her car trapped behind my brothers truck that wouldn't start.

After waiting hours, the doctor came to Marks bed and told him that he most likely had kidney stones. I thought, Thank God it's kidney stones. We have a baby on the way and I couldn't deal with him having anything really serious like an appendix bursting. Little did I know that kidney stones would turn into a bigger deal than I thought. He was discharged with pain killers, only to be taken back a few days later with even worse pain. This time they kept him and decided that he need surgery to get the big stone out. The scheduled, they cancelled, the re-scheduled and cancelled again. He had his surgery less than 24 hours before I was due at the hospital to be induced. Ugh... Thank goodness for my Mom who was off work and could come stay at our place with Poppy. I don't know how I would have made it through all that stress without her.

Mark had his surgery, was discharged and we were on our way back to the hospital the next morning for me.

Our little Ola's birth

Mark and I hugged Poppy and were off to the hospital at 8am on April 15th for my induction. I had packed and re-packed my bag twice trying to figure out what I needed what we needed for Ola and for her arrival. I finally decided I didn't really need anything major and left my bag the way I had originally packed it. We grabbed all the bags, sleeping bag, camera, video camera, and cord blood banking box and we were ready. Here we go I thought, I cried saying bye to Poppy, and most of the way to the hospital. My life was about to change and honestly I was terrified.

Everything started out the way I remember from Poppy's birth I was induced with her as well. This time though my OB decided to use the gel to get my labour started. I layed there and waited, and nothing... not one contraction. We were sent home. I had to wait 6 hours for another application of gel. I layed on the couch and waited. Nothing... only one little tightening.

2pm we were back at the hospital. They decided to skip the next application of gel. There wasn't much point, they were just going to break my water. First they needed to get a dose of antibiotics into me because I was Group strep B postive this time around. Another difference, why not?... everything else about his pregnancy had been different. Blood pressure that didn't sky rocket, gestational diabetes, a quiet baby in the womb, only a 10lb weight gain compared to a 42lb one with Poppy, and I had been bothered alot with nausea this time too. Bring it on I thought. I can do this. I am ready.

It took the nurses 2 hours to get an IV in my arm, which delayed the process even more. I was getting tired and was thankful that I had been able to go home and nap earlier in the day.

The antibiotics were in, oxytocin was started and my water was broken at 6 pm on the dot. My contractions started 20 minutes later. I needed laughing gas earlier than I had planned, I didn't like it with Poppy, but tried it again and LOVED it! Contractions were easy, and I was funny! At least I felt like I was :) When the gas stopped working, I wanted an epidural. No worries the nurses said...he'll be here in 2 hours. "Great" I thought... I should have listened to Mark and asked for it earlier. The nurse told me that she need to check me before I could have the epidural. That was ok with me, I was curious what had been going on in the last 2 hours. I was only 4 cm. I felt defeated. All that work, and nothing.

Next thing I know, I can't even get off the bed and back to my bouncy ball, the contractions were so bad! I think the nurse was wrong about the measurement. Either that or she pushed the time to push button. I was READY NOW! I had to PUSH! She checked again and I was 10 cm. I honestly think that 15 minutes had passed, I had been warned that this could happen, and it was happening. Now I was really scared.

My OB barely made it in time, she walked in the door and I was ready to go. Four contractions later and Ola Lilly was here, my beautiful baby girl was here. At 9:22pm she arrived, a full head of dark hair and a quiet disposition. This was the moment my life, Mark's life and Poppy's life changed forever.

I will never forget the next few moments. One of the nurses handed Ola to me after I had been stitched up. I remember saying "Look at her little face, she looks like a little gnome" and "She really looks a lot different than Poppy" I think I was expecting a little Poppy clone to pop out of me. I know I said these things, I have watched the video.

In that moment, that silent moment when a mother looks at their baby for the first time I knew something was wrong. I was worried about her little folded over ear and how I would get it fixed. I remember thinking I can't let my little girl go to school with a deformed ear, she would get teased, what was I going to do? But something else was wrong. I could see it in her face, in her eyes, I knew this familiar face. I knew she had Down Syndrome, and I knew the doctor and the nurses knew it too. Why wasn't anyone saying anything to us? Was I crazy? Did Mark see it?

Then it happened. My OB walked over to us, and offered to take our first family picture. I thought it was nice, Mark was suspicious. I don't think he knew at that point what was going on. All the nurses had disappeared. We were alone with the OB. She took our picture, and then it came... "I need to talk to you about Ola. She is beautiful, however I am concerned that she has a few characteristics of a child with Down Syndrome. I have spoken to the pediatrican and he wants me to get a blood sample from her placenta as soon as I can to send off for testing. It will take 4 days for results, and if we get it now it will be at the lab in the morning. Is that ok?" Of course it was ok. Take the blood, take a few samples if you need to. She smiled and was gone. Mark and I were alone with our beautiful baby girl. I looked at him, and he was sad. I was sad, and confused. I had done both of the triple screen tests to find out if the baby would be born with any problems. They came back negative. What was going on? How was I going to tell my Mom? Questions began to flood my brain. What had I done to give her this? Was it the H1N1 shot? the Hep B shot I needed to go on my school practicum? I knew I hadn't gained enough weight, I must have starved her.

We tried to breastfeed, with no luck. My brother Brad and his girlfriend Sarah came to see her and we had to tell them what was going on. I waited for the disappointed look in their face, but it didn't come. My Mom came and I told her, I waited for the disappointed look, and it didn't come. Mark took her to the nursery to meet her, and I sat in my room alone. I thought about random things like having to go home and get a job to pay for whatever she needed. How was she going to go to school? How was I going to explain to her big sister that her sister was different from her?

Mark was so tired from him crazy day before, he lay down on the horrible pull out chair and tried to fall asleep. I was awake most of the night. I couldn't sleep, I was alone. I knew we had to wait 4 days for Ola's blood results. How was I going to make it through 4 days.

The next day the information started. First a visit from the OB to see how I was through the night. A hug from the nurse with an "I am so sorry..." A visit from the pediatrician that we have come to know and trust. A visit from the hospital social worker with a resource manual for our local Down Syndrome society. Why were these people talking about DS? We didn't know that she had it. Stop talking to us like she does I thought. She could have something else right? Maybe she just has almond shaped eyes and little ears? but, I knew, I knew what the results would say. Mark had to take our cord blood sample in, he left the hospital again, I was alone, and I started to cry. I called my friend Cynthia. I had to tell her.

Cynthia and her baby Jack came to the hospital, it made me feel normal, like everything was ok. She was there for Ola's first bath, but I had to cut our visit short, and I was back to the nursery to visit with Ola. My brother Brad and Sarah came to visit later in the day, but I had to leave them. Ola was having trouble in the nursery... her blood oxygen levels had dropped without reason, she needed an IV, they needed more blood samples, and she had jaundice. She looked so tiny under the Billi lights, and so sick with the iv and lines running to her.

They discharged me that day, and she stayed for 4 more. It was hard to leave her behind, but I just wanted to hug Poppy and my Mom. I wanted to be at home. There was nothing I could do for her at the hospital. Just stare at her through the incubator.

I visited over the next 4 days, I searched her face looking for a trace of Me, Mark or Poppy. All I could see was the DS. I knew in my heart she had it, I just knew it. She didn't cry and I could hardly get her to eat.

Our pediatrician called us on the Monday and gave me the news. She had the extra chromosome. It was Downs, and I was right. I didn't want to tell Mark I knew he had been praying it wouldn't be. the doctor told me the next steps. Rule out heart problems, digestive problems. We would be going to Children's hospital in the next little bit to see a cardiologist. The first step was to get her home. He couldn't find the infection that they thought she had, so the IV came out. The jaundice had lessened and she took off her glasses. she was ready to come home.

I was so sad when we were told that she had DS for sure, but I knew that it would be ok. We would be OK. I cried hard that day, then the tears slowed and I realized we had been given a gift.

I brought her home and she was different. She wasn't the sick little girl from the hospital, she was my daughter. She was beautiful, she had a crazy hair just like her big sister, she fit right in. She fit in just like I had imagined she would. I put her in outfits that Poppy had worn, and I could see it, I could finally see the similarities.

We had a few moments at home with weight loss, a little bit of the jaundice came back, still no breastfeeding and a craptastic breast pump from the drug store that didn't work very well.

But we also had the great moments. A visit from the health unit with a wonderful nurse that I talk to almost daily. The weight gain! oh the weight gain! A party everytime there was a poop or a pee (this means that her digestive system is in full working order!) Learning about her silly faces, The visit to the Cardiologist at Children's hospital and the high 5 when he told us that her heart was PERFECT! More weight gain! A great visit with the wonderful infant development center and her great assessment, getting latched to the breast, even if it was only for 10 minutes! Visits from family and friends with kind supportive words, words that have helped me get through....and the moments just keep coming.

We are so proud of Ola and all of the obstacles that she has already overcome to get to 3 weeks old. I won't say that the tears are done, as I am sure there will be sad moments. But for now, our beautiful special little girl is home, is healthy and is happy. Taking the wise words from another mother with a daughter with DS. Our daughter does not suffer from DS, she just lives with it. It will not define her, it is merely a part of her.

Ola's ear has straightened out, no need to worry about that :) She is eating like a champ from the bottle, and I don't need to wake her in the night anymore. I almost have enough breast milk to cut out the formula altogether. Her floppy head and arms are getting stronger, and she smiles the best smiles. Her heart is healthy, her digestive system is functioning normally and her vision and hearing appear to be fine. All the things that seemed like un-climb-able mountains 3 weeks ago have changed into a grain of sand.

I also now know that there was nothing that neither Mark or I did wrong to make Ola have DS. I know in the beginning I was coming up with all sorts of reasons, but honestly it was a totally random happening in either my egg or Marks sperm. Our pediatrician explained to us that in my case that my eggs were already assigned whatever was going to happen as soon as I was conceived. With Mark, if it was his sperm, it could have been one of tens of millions, and had we conceived her on another day, it might not have happened. What are you gonna do?

I cannot thank our families and friends enough for all of their kind words both about Ola and about Mark and I. Your words are making me a better mother everyday :) so... THANK YOU!!!

Our family will be different now, different than what was expected. Different now because I have two daughters instead of one. Not because one of them happens to have Down Syndrome.

This blog will no longer just be about my dolls. I want to share more of my life, my families life. I want the opportunity to share our experiences with others. We have already been touched with kind words from other families sharing similar experiences with us, and if I can shed a little bit of light and hope for another family who are going through what we have I would like to help.

So... shall we toast? TO NEW BEGINNINGS!