My growing family and updated photos.

On the left is Chloe Margaret Marie Nicol, middle is Owen Caleb John Nicol and right is Norah Joan Maelisa Nicol. This was taken in the spring of 2015. Chloe had been with us since November 2015.
Chloe is a brain trauma injury survivor. She has Cp, CVI, shunt g tube, non verbal but very noisy LOL and non ambulatory. BUT... she is learning....We are trying to give her every opportunity we can to develop new skills and experience life in the fullest. We are thankful GOD brought her in our lives.

 

 

tummy time on elbows

learning to go from tummy to sitting unassisted

tummy time in her bed using pillows and on elbows

trying to get on her knees- 4 point crawl position

Always have HOPE, dream BIG and have faith to believe it.

The girls were recently blessed by an organization called abilityonline.org who did a fundraiser to purchase adaptive bicycles. We had local friends and family and Kiwanis club donate to raise over $8,000 to get them with donation from motionspecialites.com who was our vendor to get them and they arrived 2 days before Christmas. We had no snow and mild winter weather for a few times over the holidays so the girls and Owen got to ride together. #inclusive- #awareness-#effort-#action-#acceptance xx 00

Embracing life with new diagnosis.

This time last year we were called by our genetics team to come to the office for a consult.
Our genetic testing results were in. Finally we had an answer. Because of confidentiality rules and hospital policy they don't tell you a thing over the phone.
This is annoying for a family like ours. You want to google it before you get there. We had a Diagnosis of MPS III for a few months. I had googled in and found new friends on Facebook. It is the first thing most families do. At the office the counsellor had told us Norah tested positive for a mutation called 9Q34.3 otherwise known as Kleefstra syndrome. It was rare. Last year there were fewer than 200 worldwide diagnosed with it. A year later my KS family has grown. You can click here to get more info... www.kleefstrasyndrome.org  . The diagnosis was no longer what we were dealing with. It was a full exome test that caught it. We had the other genetic testing done previously. FISH test and micro array. It is not uncommon for Kleefstra syndrome to be missed by those tests. the full exome test was the last test to be authorized and done.
We also have other diagnosis to add to that main one.
Norah also had sleep studies done and confirmed Central sleep apnea. She is now using a bi pap machine and is on an oximeter .

 

This happened last July 2015. It took a long year a few months to get there. I observed Norah during an ER visit for vomiting having an apnea moment. She was hooked up to the monitors for heart rate and oxygen. It beeped and alarmed several times and I brought to the attention of the nurses who brushed it aside and turned them off so that  the noises wouldn't bother them anymore. exact quotes. I asked them to wait so that I could record using my iPhone. I later sent it to our developmental  paediatrician and paediatrics Dr. agreed it needed further testing. We got in for a sleep study locally at a clinic but the Dr. couldn't  be confident that he could properly treat her because most of his patients were adults who had obstructive sleep apnea so we were referred to sick kids in Toronto.

Since last January we have had to endure several hospitalizations for vomiting. Cause unknown until this pat October when it was diagnosed as Cyclic vomiting. We had so many trips to the local ER and children's hospital ER. October 31 started the worst block of it when we were in hospital 8 times. Sometimes for 5 days at a time with a 2 day break at home and it would start all over. One time I was called at school because she was crying , which she never did, the poor kid couldn't ever walk standing straight up. I took her straight to our local ER where testing showed she has a UTI , she went into septic shock and we were sent by ambulance to Hamilton. We originally went in presenting with pain, blood work revealed elevated white blood count, she got a weird random pin prick rash starting at her neck and it moved onto her chest and arms and shoulders then around her back. Her heart rate went up and down and BP went low. I was calm and at peace knowing GOD was in control. I prayed a lot and posted a status update on Facebook for my prayer warrior friends to pray as well. George was home with the other kids.

 

What I have learned through all of this.....

GOD is good,

God gets me through it all,

I can trust him for everything,

God has enabled me to be an advocate,

I am always learning.

I see GOD in everything.

October 2014 Nicol Family update

Well, here we are again, one year after my last blog .


I apoligize for not blogging regularly but have come to recognize that the internet life and posting information about our lives and kids lives is an area where mean people can do mean things. I took a break from blogging because our personal life was tampered with.


Now, one year since my last blog post, our lives are changed again. We are adopting.


We are excited. We will not post stuff . IF I want you to know about our lives, you most likely will know about it, in real life.


Norah is doing well. She is in Grade 1. Owen is in Grade 4. They both are excited about having another sibling.