Hello 2017! It’s the end of Feb!

A few months ago I was starting an evening typing session when a certain little one woke and needed cuddles and milk.  The herbal tea I had made myself slowly cooled as it sat next to the open laptop on the couch. An almost full cup of liquid, an expensive electronic device, and a flailing child – what could possibly go wrong? One deft little foot gave one swift kick, and the inevitable happened.

I tried all the tricks I knew, but sadly my poor old laptop slowly lost functionality until the best I could hope for was slowly scrolling one of my previously bookmarked sites. My faithful old Macbook had reached the end of its life.  I tried to make blogging and budgeting work with an iPad and a smart phone, but apps just don’t cut it for full functionality. So last weekend, after much deliberation, I placed an order online for a replacement laptop. It came yesterday, and it is marvelous in all its cheap-but-functional glory!  It’s hardly an upgrade, and I’m having an adjustment period going back to Windows OS after years of Macs, but I’ll get there.  I was always a PC girl at heart anyway!

We have so much to catch up on here.  I can’t believe its the end of February already! 1/6th of the way through 2017.  Elva turned 2 a week ago! We’ve moved house and the playroom is almost up and fully running (just need a trip to ikea – eventually!) and after one too many incidents we made the decision to go totally gluten free in our home, and 99% dairy free.  Lots to catch up on – hopefully that means lots of motivation to blog!

Kx

 

What we eat – Zucchini and Corn ‘Cake’.

After my laptop had a mishap with a cup of herbal tea at the very start of October all my blogging dreams for the month flew out the window and I resigned myself to a very quiet Down Syndrome Awareness Month blog-wise. And so it was, I had the ability to copy and paste other people’s stories and so I posted a few of those with their permission, but otherwise I just focused on an instagram post every day. And I did manage to get my #31for21 out! 

Over the last few days I have had to figure out a way to type up large amounts of text without my laptop, and my husband pointed out that I could actually use the iPad. Yup, I hadn’t actually thought of that! And today I discovered the WordPress App was also available on iPad (Again, yes. Cut me some slack, I only got an iPad after I had children, which means I’ve never used it for any decent length of time!) so here I am! Cup of tea in hand, one child asleep and the other suitably occupied – I’m going to write a little blog post!
Ever since I posted my blog about Baby Led Weaning I have intended on posting some recipes to give a better idea of what it is that I feed my kids. As I have coeliac disease and Elva projectile vomits if she eats gluten we don’t keep anything glutenous in the house. Elva also appears to be intolerant to dairy proteins, so nothing I make contains dairy (though we do have some dairy in the house and those that can eat it do when it is the healthier option – ie. butter rather than nuttelex). We aim to eat minimal refined sugar, avoid soy (with a couple of exceptions), and make ethical choices about our food wherever possible (ie properly free-range eggs, preferably from my parents chooks). Making ethical choices isn’t just better for the animals, it’s also better for us as well. Hens that are given the opportunity to scratch and forage eat a wider variety of foods and consequently lay eggs that have better nutritional value.

So, what do we eat? I do a fair bit of baking for breakfasts, lunches and snacks. I usually supplement these with raw foods comprised of nuts, seeds and dried fruits, however my lovely high powered blender is currently waiting on a replacement part. Dinners are often curries, salads, pasta dishes, or slow cooked meats and roasted veggies. The recipe I am posting today is a very quick and simple baked slice which would make a good light lunch or after-school snack (a 2-for-1 deal if you can time it right!)

Zucchini and Corn Slice

Yup, it’s a terrible photo taken in artificial lighting with my iPad. It was a choice between not posting anything, and using a terrible photo. YOLO.

Ingredients

  • 100g flour (I used Orgran GF SR Flour blend)
  • 1 tsp baking powder
  • 1 tbsp each of ground paprika, cumin and coriander seed
  • 4 eggs
  • 120g coconut oil, melted
  • 1 420g can of corn, drained
  • 1 med zucchini, grated (about 1 1/2 – 2 cups)
  • Pinch salt and pepper (optional depending on age of baby)

Method

  1. Heat oven to 180C (160C for fan-forced). If not using silicon slice tray, oil tray.
  2. Combine dry ingredients (don’t forget salt and pepper if using). Whisk in eggs, then oil til mixture is smooth.
  3. Mix through corn and zucchini until distributed throughout the mixture.
  4. Pour into slice tray and bake for 45 minutes, or until a skewer inserted into the centre of slice comes out clean.
  5. Eat! Good with sweet chilli sauce.

Do you like to bake? What is your go-to simple lunch? Have you tried this recipe? Let me know in the comments below!

K x

Diagnosis Stories – Stacey and Taio

We received a pre-natal positive test result for Down syndrome at 21-22 weeks into my pregnancy. After receiving this result we were given no information by any doctor or midwife, we were just told to google and research Down syndrome. It wasn’t until one of my appointments with a new female doctor at the hospital that I was told to abort my baby, because with him having Down syndrome it would bring stress to our family and nothing but health issues for our unborn son.

We decided after receiving our positive test results for Trisomy 21 that we were keeping our son. The doctor was against us keeping our son and explained to us in her religion it would be taboo for us to keep him. We asked for a new doctor regarding the concerns we had for treatment and his caring needs after his birth. I was given a new doctor who understood what we wanted and everything that was going on with our son. 

I was induced 4weeks early due to complications. My son Taio was born weighing 2.5kgs and 47.5cms long. He didn’t need any help breathing on his own or any other complications. He spent the night in the special care nursery. Taio feed well from the beginning and we were sent home the next day. Apart from having toxic levels of jaundice at 7 days old Taio has never had any major health issues. Everything we were told before his birth about his breathing and heart and all other health issues he would have, Taio has never had any of them. Basically we were told a bunch of things that doctors wouldn’t know 100% themselves until after Taios birth. 

If we could go back in time I would have chosen not to have had pre-natal testing, as the treatment we received from most doctors was unreasonable and cruel, because they always made out our unborn son would never have a good life. Well unbeknown to the doctors our son is now 16months old and enjoys life. He loves being outside and playing with his siblings. Taio has shown no matter what the odds put against you, everyone deserves a chance to live and to show the world that they are also people. People who can bring change and love to not just a family, but also their community. Having Taio in our lives has changed it for the better and shown us the world in a new light, but it has also shown us there are some very judgemental people out there. More education is needed on Down syndrome, but hopefully one day our children can change the world no matter who they are.
– Stacey, Taio’s mum.

Diagnosis Stories – Erin and Fenton.

​’May 2016, we received that phone call.  That one call that literally shattered and rocked my world.  Our sweet baby boy was showing 4 markers for Trisomy 21 (Down syndrome).

It really was not a phone call I was expecting. With the four markers and my advanced maternal age, we were encouraged to see a specialist.   He is our 6th baby, all other pregnancies were simple and without incident.  I remember hearing lots of terms being read to me over the phone from the radiologist report, although I hung on to every word I was in a fog and cloud while the results were being read to me by our midwife.  As I hung up that phone I thought, “Really? This news delivered over the phone.  This life altering news told to me over the phone, as casually as possible, like my order for food was being repeated back to me.”  I got off that phone, collapsed and I cried.  I felt like I had entered a terrible dream and was hoping to wake up.  My mom was the first to find out along with other family.  There wasn’t joy or smiles in their response only sadness and worry.  That broke my heart even more. 

God is good, not soon after this initial news, we were put into touch with some amazing moms who also have their lucky blessing, a child with Down syndrome.  I remember one mom in particular whom I met.  I saw her sweet daughter with Down syndrome playing. She happened to be visiting that church we were attending,  I came right up to in the cry room where our little ones were, and told her that my sweet boy had been diagnosed with Down syndrome. I broke down and cried.  She stood up without a word and just hugged me.  That moment,  that action, was a moment of healing for me. Through that action there was communicates a profound sense of ‘I know exactly what you are going through’.   She then looked at me and smiled and said “Congratulations. I know it doesn’t seem like it right now, but you will have more joy then you ever knew you could have with this little one.”   Congratulations?  What. I haven’t heard that word yet.  Only looks of sadness and sorrows for the child I carried.

 We geared up for our first visit with the Maternal Fetal Medicine Clinic.  I had heard those awful stories of specialist who pressured termination following diagnosis.  I just didn’t want to have that conversation, I didn’t want to go there.    This specialist was amazing. He was so encouraging.  The genetic counselor was compassionate and gave us a ton of resources.  We went with the cell free DNA test to help confirm the ultra sound findings.  Since we were a little over 20 weeks at that time the amino might have been too risky. 

Our second visit with him, I told him that I dread these appointments with him because his job is to find something else wrong with my baby.  It isn’t a very stress free occasion for me.  He looked at me and smiled.  His response was unexpected.  “Let me just say, I’m glad to see you back.  I don’t see a lot of parents back for the other visits.  Your baby is precious and beautiful and I can’t think of a better family for him to be born in.   Your little one is going to be just fine.  I look forward to seeing him prove others wrong.”   So profound to me. It rocked ny world in a good way.  

Since then, I have met some amazing people in the Down syndrome community.  They are all so loving and have reached out as support to our family in ways I never dreamed.  A new friend took maternity pictures and has offered to be a support doula at our birth.  Moms have PM me and told me their birth stories.  Some will just check in to see how I’m doing.  

Our 4h club threw me a surprise baby shower.  They are all so excited for the birth of this sweet boy they can’t wait.  While some in our lives remain silent, still sad or distant, we have friends who are celebrating this boy.  Celebrating a uniquely beautiful life.  My OB on our last visit smiled and got excited about his upcoming birth day.  She told me she has her running shoes on and can’t wait.  We have been blessed.  I love that our boy will be born in October, which is Down Syndrome awareness month. We can’t wait to lay eyes on you and welcome you into our family. You will be loved and cherished always sweet boy.  

For those moms and dads who’ve just received  the same news we did, you are not alone. Your journey has just begun but it will be an  amazing one filled with all kinds of emotions and new friendships you will make along the way. October 16 is his due date.  Our fear and yes our sorrow has turned now into complete joy with anticipation of meeting this sweet boy, who has already blessed our lives.  I can’t even begin to imagine how much more blessed we will be once he arrives earth side.’

UPDATE: Fenton was born 2 weeks early on the 2nd of October, 2016. I chose to continue with my plan to publish Erin’s diagnosis story on today, the 16th and Fenton’s due date. Congratulations Erin on the birth of your gorgeous boy! 

Erin has updated as follows:
‘Let me also add, now that he is here, all that fear and worry I had had melted away, and has only been replaced with a love so deep that even words aren’t adequate in describing this strong connection and love I have for him. He is not a baby with Down Syndrome.  He is Fenton, my baby our sixth child who is beautifully and wonderfully made.’
Erin – Fenton’s Mum.

Diagnosis Stories – Shirley and Charlotte.

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My story and Charlotte’s story has been a year in the making. I wanted to write about my highs and my lows, my fears and my accomplishments. But most of all I wanted to write about one of the most amazing experiences having Charlotte has brought into my life and my family’s.

On the 9th of August 2015 I gave birth to a beautiful baby girl, when I looked at her there was such a relief. I remember as I looked about my precious baby I noticed how petite and differently shaped her little ears looked and she wasn’t the best feeder at first but that was ok, she was perfect in every way.

Prior to her arrival it was a wonderful time for me, I was so looking forward to the arrival of my precious bundle. I remember laying in the hospital bed with my husband beside me, he was looking on FB and came across this picture of this cutest little toddler with the most adorable chubby cheeks and these adorable pig tails. This little girl also had Down syndrome, I remember my husband saying how beautiful she was and I agreed yes she was, but deep down inside I knew I could not handle having a child with Down syndrome. Little did I know that that was all about to change as God had already had other plans for me.

I’m not one of those people that could have a special needs child, that to my understanding only happened to special parents, parents that could handle that situation, right??? Wrong. Little did I know there and then that that beautiful little girl in that picture would be very similar to the baby I was just about to give birth to.

I had a horrific ordeal after having Charlotte. I haemorrhaged and had a retained placenta and needed a d and c and a blood transfusion. This happened all in a 48 hour period on top of having an allergic reaction to the different drugs they were pumping into me. I was very sick, and all the while trying to enjoy my new baby whilst she was also having trouble feeding. I had to express and we got milk down her with a teat which by the way she handled like a trooper.

I asked the nurse why was my baby having trouble feeding, after all she had been my tenth baby and I had never had this problem before. All my other baby’s could never stop feeding off my breast, why was Charlotte so different. The nurse answered telling me that it was because Charlotte had a large tongue. Ok, that was strange, I wondered why. So I grabbed my phone and googled straight away, and would you believe the first answer that came up for the cause of a large tongue was Down syndrome. For a minute I became very fearful but then realised the doctors or nurses had not said that there was anything wrong with Charlotte so I just shrugged it off.

The next morning the doctor came in telling me they just wanted to do a routine medical check on Charlotte, I thought about it and agreed. Well they did take a while and then finally brought her back. It was then the doctor came and saw me and sat down on the bed next to me and at that moment my life changed forever! “We think Charlotte has some chromosomal markers and we are just waiting on the test results”. I went into panic over load as I knew straight away that they were telling me that my precious baby could have Down syndrome.

I had heart palpitations and went into an overload panic attack. Then the doctor left me, with all these new fears of the unknown, thoughts racing. What was to become of my baby, my family, my life. I knew nothing and felt completely in the dark. I truly felt like I was experiencing the most darkest moment of my entire life. On top of that I now had to tell my husband which brought another fear. How would he take this? What would he think?  This truly was not happening, I’m just having a nightmare, please God wake me up.

Then my husband came in and I told him the “BAD” news. I imagined he would mourn with me and be totally devastated but instead he turned around and said “but she is beautiful and she is ours”. At that moment I fell in love with my husband all over again, I knew he accepted whatever was thrown at us but at the same token he believed there was nothing wrong with Charlotte. Because he couldn’t see the features but the minute they told me I saw the features more and more each time, It was a battle going on in my mind. Sometimes I could see it and sometimes there was nothing there. I was literally sending myself mad.

Then I became a crying mess, all I did was cry and cry and cry. I could not sleep, I could not rest, I felt so sick, all joy of having my baby was all gone. I felt like I could not breath and I could see no good of anything that was happening. No one had answers for me, I had a million and one questions yet at the same time I had no idea what to ask. Nurses looked at me with confusion as to why I was so upset and others just ignored me. All I wanted was to was go home, but I was so sick I could hardly get off the bed and Charlotte was still being feed by a teat. The doctor wouldn’t come near me. And I couldn’t stop crying.

I asked a nurse what would it mean to have a child with Down syndrome. She turned around and told me that I would have to watch her skin from getting too dry and I would have to watch how many trips to the fridge she makes because of weight issues (which I later found out was thyroid issues) and she may get to a mental age of 12.
Well that really answered so many unanswered questions for me. Thank you for being so forthcoming with all that wonderful information. I remember thinking I can handle the mentality of a 12 year old, I have the most amazing 12 year old daughter that can run a household standing on her head.

I did not sleep the whole night, I spent the night googling and and trying to read testimonies. I came across a page called “Noah’s dad” but My phone kept playing up on that one page. I just lay their all night trying to get my baby to feed, crying, thoughts racing.

The next day I was in an even worse emotional state. I couldn’t stop crying, I told the hospital I was well enough to go home and I was taking my baby home. I was a woman on a mission, I had to get out of there! The doctor gave me enough sleeping tablets for 5 days as she knew I had not slept for 3 nights. I felt like I was loosing my mind. My husband chose to do the night feeds the first night home as he was desperate for me to get sleep. 2 sleeping tablets later I was still awake, my mind was racing even more. Then my husband gave me a third sleeping tablet and I finally after 3 nights of no sleep and 3 sleeping tablets later, fell asleep.  I remember waking up half way through the night seeing my husband giving Charlotte a night feed, straight away I cried again and cried myself back to sleep.  I had woken to my nightmare!

The next day I still could not get Charlotte to feed off me, I was not bonding very well and my girls kept taking her to hold her. I’m glad they did as I was an emotional mess but made sure I did not cry around them as we had not told the kids yet. The following day the hospital rang to say they had the results. My husband, me and Charlotte went into the hospital to get the results. The doctor turned around to me and said that she had a fair idea I already knew what the results were, and she was correct, I did know in my heart. Charlotte was positive for trisomy 21, there and then I felt like I was ready to move on and cope with whatever was thrown at us. My doctor said Charlotte was beautiful and that she will be such a blessing, and that my family would be a blessing to her. She prayed with us and encouraged me but I was still feeling deep sorrow.  That night I was more determined than ever before to breastfeed my baby as I knew she needed me, and I desperately needed to bond with her.  When everyone was in bed I held my baby close and little by little she began to latch on, from then the bonding process began, and my healing began.

We eventually told the older kids and then some very close friends and that in itself was like a weight was lifted, I reached out to many FB groups and so many wonderful mums reached out to me and helped me to understand that nothing I did or didn’t do made Charlotte have Down syndrome as I was carrying such guilt and blame.  12 months down the track I finally realise going through the emotions I went through when having Charlotte was very normal, but I wish I didnt mourn her birth. I wish I had celebrated her birth. Charlotte is one of the best things that has ever happened to me, I love her so much it hurts. She is so sweet, always ready to give me a smile and a hug. I just love her hugs. She loves to sit on my lap and watch her brothers and sisters play. I look forward to when she wakes up because I get those hugs all over again.

I want to tell other mums that have found out their baby has Down syndrome, congratulations! You are going to feel more love than you can possibly handle ad make the most amazing new friends than you ever had. Life will be a whole knew journey full of challenges, excitement and celebrations of all those milestones met.  You will cherish your little one and not want to imagine life without your child. The hard times will come, you may still feel sorrow or grieve but it will pass.

God has shown me just how precious life is and how to not take things for granted. He has shown me that though the hard times may come he will always get me through, and from all that has happened he has blessed me beyond measure for Charlotte is fearfully and wonderfully made!!!!

Shirley

Diagnosis Stories – Jody and Flora.


Flora was born around 1:00 am. Right away when the midwife gave me the baby, I mentioned to my husband that her eyes looked “funny” but no one else said anything about it, so I assumed she was just puffy from the birth. The nurses checked her over, cleaned her up, and let me breastfeed (Flora did great at nursing!) and cuddle her. We were completely smitten with our new baby, and I just couldn’t believe how tiny she was! (Flora weighed 6 lbs, compared with her sister who was nearly 10 lbs at birth!) Later the nurses took her to the nursery so I could get some sleep. 

The next day our older two daughters and my mother-in-law came to see the baby and have lunch with us. It was so much fun to see the girls interact with Flora–everyone was so excited about her arrival! Around 3:00 or 4:00 in the afternoon the pediatrician came by to see us and check Flora. As far as we knew, this was the first time she was being seen by the doctor. As he examined her, he asked us, “Do you notice anything about Flora’s features?” I said, “Yes! She looks so much like our oldest daughter when she was born!” He continued to examine her and he asked, “Have you ever heard of Trisomy 21, or Down syndrome?” I thought of her “funny eyes” and my heart completely sank. I honestly don’t remember what he said next, because I was in shock. 

The doctor very gently pointed out to us the features he saw that indicated DS (the shape of her eyes, her small size, her low muscle tone, and the crease that went across her palms). He said that they would do testing to be sure that it was T21, but he was pretty sure. I started to cry, and he gently asked me, “Why are you crying?” I said, “Because those kids have such a hard life.” He said, “The picture you have of DS may be very outdated. Now, children with special needs have a very high quality of life. They go to school, they have friends and family who love them, they get jobs, they do things independently. I have had several patients with DS and I don’t think they would say their life is hard.” He went on to talk briefly about DS and he never once said anything negative about it, other than that there were some medical risks we would have to check for. He said he would leave us alone, but he would remain available at the hospital for the next couple of hours if we wanted to talk to him more. 

The entire nursing staff were exactly the same way. Everyone was very sensitive to our feelings of shock and grief (which would little by little give way to complete acceptance and love for this sweet little baby!). Our nurses told us about friends they have who have an adult son with DS and another nurse who has a sister with DS. One nurse also told us that the pediatrician had examined Flora early that morning and made the DS diagnosis at that time. He would have talked to us right away, but he had a very tight schedule that day, so he instead opted to come back at the end of his work day to meet with us so that he would not have to rush through the conversation and so that he could be available as long as we needed him.
The day we received our daughter’s diagnosis was probably the most emotional day of my life. I am so thankful to the amazing hospital staff that we had, for presenting the news to us in a gentle and positive manner and for giving us some time to just enjoy our baby without immediately worrying about her diagnosis.  I feel like it’s important to share, since most of the diagnosis stories I hear are pretty negative. I really appreciate the approach our doctor and nurses took!
Jody -Flora’s mum.

Diagnosis Stories – Claire and Xavier

We received a high chance at 13 weeks, the doctor made an appointment for us to see the paediatrician to discuss what life will be like with a child with Down syndrome. Before the appointment he rang me and told me to not be alone, to bring someone and be prepared because he was going to be honest…even if that meant there would be things I didn’t want to hear. 

I turned up expecting the doctor to pressure us into termination but he was very unbiased. He told me the statistics. 40 percent have heart defects, so many have autism, thyroid etc etc. He then also showed me some photos that were on his desk of patients of his that have Down syndrome. He then told me “they can also have great, productive lives” he then also told me to stay away from info on the net and gave me links to accurate up to date information. He also printed out some info regarding tests that would be done on my baby and at what age. He answered all my questions. I remember when I left I looked at my husband and said “you know what, none of that scares me off having this baby”, still, we went through with an amniocentesis because we were also given a high chance for raising 13 and 18.
The process from there to diagnosis was about 3 weeks….longest three weeks of my life. I got a phone call saying to come in to the Dr. I knew straight away my baby had one of the conditions because they previously said if it was negative they would tell me via phone.
The doctor just said “you knew there was a high chance of your baby having trisomy 21, the results confirm that your baby does have trisomy 21, down syndrome”. I sat in silence, not even able to speak. I then asked “I know it’s not important but is it a boy or a girl” he replied “it makes it more real, your precious baby, is a boy” I looked at my husband and that’s when I cried. We so badly wanted a boy. The doctor kept quiet I think to allow me to process the news. I then said “what do i do now? What do I do next” and his response still gets me every time “just go home and be with people you love”.

I always felt my doctor had my back and always felt like he supported by decision either way. He asked if I wanted to terminate once. Once I said no, he left it at that.

I once had a trip to emergency after a small complication and had a random doctor. He asked me if I had had an amniocentesis and what the results where. After to told him down syndrome he said “and you decided to keep?? Why??” I told him “my husband and I decided that’s what we wanted to do after careful thought and consideration” his response “I’m not sure that was the right decision, you obviously had an amniocentesis because you would terminate if ds was detected. Now your keeping the baby because you feel guilty” my husband stepped in at this point and said “no, the amnio gave us the chance to process the news before the baby comes along and helps us prepare”

Claire -mama to Xavier.