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.

Sometimes......

Wow ! It has been a year since I last blogged. Bad me.
Sometimes life gets in the way.

Quick recap- still waiting for an adoption placement. It takes forever you know. Patience is tested on this adoption journey at every step. Workers go on vacation and you wait for replies. Communication is difficult.
We had a match , and had been doing transition visits but then we stopped and did not move forward.

Now we are back to another match and waiting for information sharing. We hope to have a visit planned sometime in the future. GOD will make a way when there seems to be no way.

Kids are happily back at school. Summer was not fun. We promoted Granna to Glory after her short fight with cancer on July 15. It was a difficult few months travelling back and forth to the hospital and moving her from nursing home to another nursing home. We didn't do anything marvelous for our holidays. George lost his job Aug 29 but has since returned to a new one. PTL.

Norah had been doing so well with having no g tube feeds since June 9. She was only being fed at school and has been eating some foods regularly. She was doing amazing with drinking from her straw until a few Thursdays ago when she woke up crying and not wanting to eat/drink. Off to ER. A chest x ray showed pneumonia, only after the radiologist confirmed it at my request. Norah was on antibiotics for 10 days. I was hoping it was a germ and not aspiration. I contacted our OT at the hospital and we got in for an emergency swallow test. Norah failed. She aspirated using a straw so its back to g tube feeds. When I pulled out her Joey machine she gave it a HUG. I was a crying  babbling fool. I was crying more this moment than at any other time in her life. I learned a good lesson from her during that moment. She is always full of JOY, her circumstances NEVER defines her. My biggest concern is her lack of being able to communicate, especially when it comes to health issues.
She has a supertalker now so we are learning to use it. She is a pro at home but she fails out in public. We have to work on it at school as well.

 Norah in her new ballet costume. Yep she's a dancer.

Family photo shoot - Nov 2012. I was prompted by the Holy Spirit to have Winnie included. I t was a very cold day and she could barely walk because at the time her hip was bothering her.
Photo credit @Lisa Neutel :)

 

The rewards are greater than the stress.... we are growing...

First off, I do so apoligize for being the worst blogger ever. Nov 2012 was the last post and now 6 months we have a new little person, now known as the acronym NLP. Can't disclose name or photos due to confidentiality. BUT she is cute and she fits.

George and I have had our visit, the next week the kidsd had theirs, then 2 days later we had an overnight. Awesome , it went awesome.

Now we have her again, for 3 nights and so every week we will increase it a night until we get to a full week with no major issues.

It blesses my heart to see my family interact with her and love her. She fits, she belongs.

Plus ONE

Here we are the beginning of November 2012

Things are going to change for the Nicol family.

Some you may be aware- or not ! That we are in the final stages of getting a homestudy done from our local CAS. Yep one year ago , we received an email from someone in our church to pray for some kids that recently lost a parent and who were orphans. It stirred our hearts to go down the road to adoption.... again.

When we were trying to get pregnant a second time , we had a CAS worker come to our over the Christmas holidays to get paperwork started and to start the process over 4 years ago.  It was at that time, we got pregnant with Norah and had to call them to cancel that plan of adoption ....again.

Here we are again, me again, BTDT got the t-shirt. In a previous relationship I was a foster parent and prospective adoptive parent but that door closed. Thank GOD !

We are done our homestudy. It is  at the agency ready to be signed. We are waiting for a final walk through so an adoption worker can meet and greet us and give some feedback. We had an outside adoption practioner do our homestudy because the agency had lots of families to get done and they wanted to fast track some of us. So the AP that did our homestudy knows us well. The AP at the agency does not. So they will probably spend some time getting to know us and verifying what is written in our homestudy.

We had and expression of interest in on a child that we met online on the provincial photolisting site but we feel now that it may not the right match for our family so we are open again to being lead. Tomorrow we plan to go to a mini adoption exchange meeting to let the local workers know about us.

Both the kids are excited at knowing they will be getting a new person/siblings in their lives soon.

I will update as we go further into the process.

It's been way too long

I am so sorry to those 5 followers who read my blog. So dissappointing , I know.
It's not my life is worth bloggin about. Or is it ? Of course it is.

Much has happening since my last blog post in June.

Let's see Norah is now walking independently. July 26 she was in the kitchen and up she got from sitting and away she went.

This is at Lake Lisgar- Daycare summer party.

Our new front porch- Silver cross. less than $500 for the wood but they charged March of Dimes over $6,000 which did include the chair lift- $3000.

It means we can be outside on the porch with the dog. I call it our outdoor playpen. We still need an auto door opener.

                                                 I did the above photo for last day of daycare .

 Our trip to Southside park. Norah walked around for the first time.

A helping hand from Big Brother Owen.

Our newest health concern. We are going for an ultrasound October 18.

Watching the Olympics.

Dressed for church.

This was a day at the beach. Lake Whittaker.

Cutest Ballerina EVER ! Yep Norah's been wlaking for 5 weeks and is signed up for dance lessons.

 

We spent time at Ester Seals camp for our summer holidays. What a great time that was ! Will post a seperate post just on our days at camp.