Zoe and Ailsa are so excited! They want to hold, kiss, touch, love Willow constantly and are learning to be patient when Willow just wants to sleep, sleep, sleep. Zoe is doing a great job slowing her body down and being gentle when touching Willow. It takes a lot of muscle control for Zoe to move slowly so we know how hard she is trying.
Everyone is doing well. Genevieve and Willow were able to come home hours after the birth. Midwives are coming to the house to provide care. It's been great- we can wrap ourselves in a little cocoon and just focus on getting rest and Willow learning how to nurse. Gavin has to travel outside our cocoon to do the school drop off/ pick up, get groceries, etc but he is loving being off of work. After Zoe and Ailsa, Gavin was not able to take much time off. This time he is excited to take time and enjoy these early baby days. They will go by so fast!
Zoe has grown so much and is mature in new ways and yet, when she is tired or sick she still seems so little to me. She is still my baby girl.
Zoe has had a rough couple of months. She recovers from one illness and then is hit with the next. Thankfully, none of her hospital stays have been long (only a week at a time) but every month since February, Zoe has had a hospital stay.
Happy Birthday Ailsa! Ailsa turned six during Zoe hospitalisation last week. Since Zoe could not be home with us, we brought the party in to her. Even the clown stopped by to sing just for Ailsa. She was so excited that the clown came to see her, not Zoe this time. Even though Zoe ended up having seizures during her party and was not well, Ailsa still managed to have a good birthday and feel special. At the end of the day, Ailsa said, "This was a wonderful day." So I guess Gavin and I are doing something right!
This last hospital stay was a bit scary. Zoe had to be "loaded" with seizure medication two nights in a row in order to stop seizing. Zoe was having clusters of seizures- she would seize for a minute and then start to come out of it for a minute or two and then slip right back in to another seizure. This went on for an hour. The doctors tried a less sedating seizure medication initially but it did not work and they had to use IV medication instead. Zoe has not had seizures like this in years. In fact, we can not even remember if it has been 3 or 4 years it has been so long. We are hoping this is not becoming a pattern for Zoe again. When Zoe had cluster seizures like this in the past they turned in to "status" seizures which means she seizures constantly for over 30 minutes. Her longest seizure was 75 minutes but it felt like it went on for hours and hours. So we really hope to not see any increase in Zoe seizures.
Also a bit worrisome is that Zoe continues to develop full body hives when her immune system is challenged. This happened two days before Zoe started having fever from this latest cold and infection. It seems Zoe's immune system is hypersensitive and there is nothing we can do about it other than give her antihistamines to make the itching more bearable. Zoe is such a sweet child. She is determined to be happy and make the best of any situation she is in. It is heartbreaking to see her so uncomfortable. But we do have a plan now that deals with the hives early in the outbreak and that seemed to help this last time.
We finally got all the paperwork completed and funding in place for Zoe's new (and ridiculously expensive) walker. All we needed was for Zoe to pick the colour. Zoe went back and forth and would not commit to any one colour. We thought, this is odd- Zoe usually knows exactly what she wants and says so right away. Zoe rarely changes her mind once she has picked something. So after many conversations it finally came out that Zoe seems to have a bit of a crush on a boy at school who has the same type of walker she is getting. And she was thinking about getting the same colour as him instead of the colour she wanted. I teasingly said, "What is he your boyfriend or something and you have to do everything the same" which Zoe quickly hit "Yes" on her talk program and was giggling and giggling. What????? I was just kidding. My daughter is way too young to pick things based on what a boy might think!!!!
After all the giggles and blushes, we were able to talk to Zoe seriously about picking what she wants because if this boy likes her too, it is probably because she is herself. So he would want her to pick what colour she wanted, not a colour just to make him happy. OK, I don't know if this is true but if this boy stops liking Zoe because she picked a different colour than his walker, well then he is not worth her time! And another thing- he is younger than Zoe! She is looking a younger men already. Man- we are so not ready for the teen years!
Communicating with a Non-verbal Person
I heard a story on the radio this morning about a young man (Hector) with autism in Texas. To summarize- Hector loved going to his local blockbuster since a young age. Employees at the store knew him well. When the store got notice it was closing, an employee gave Hector's mom notice because they recognized what an impact this would have on Hector. Employees and Hector's family worked together to create a mini-blockbuster in Hector's home to help him cope with the store closing. What I find so touching about this story is that the employees recognized what this meant to Hector. Hector is non-verbal and yet, he was able to clearly communicate with these employees for years. They understood the significance this store had for Hector. I love stories about non-verbal people who still reach out and touch other people in a different way. If you want to read the full story, here is a link:
You will have to copy and paste since the blog does not want to make it a direct link.
Zoe, although non-verbal, communicates so much. We are always grateful for the people who take that extra time to talk to Zoe. Or even people who just see her big smile and smile back. You don't need to speak sign language, or know how to use her talk program in order to communicate with Zoe. Sometimes people get it and it makes Zoe so excited when someone talks to her rather than just around her. Zoe is a very social person. Sometimes people don't quite get it or question why we are advocating for certain things. Zoe had surgery to replace the PORT in her chest (more on this in a moment). We asked that Gavin be able to go in with Zoe until she fell asleep. The doctor didn't really understand we were advocating for Zoe's sake, not our own. He said things like, "Well it will be so quick and she seems pretty happy." Yes, this may be true. But despite her new maturity in picking out boyfriends for herself, Zoe is also just a kid. A little girl who is scared to have surgery and wants her mom or dad there to help her relax as she falls asleep. Although the doctor did not quite get it, he did allow Gavin to go in with Zoe. So we were grateful. Even though he did not seem to understand Zoe, he was still able to respect her wishes as told to him by us, her parents.
Zoe's PORT Surgery
Five years ago Zoe had a PORT inserted in to her chest. The PORT is a device implanted just under the skin. It is attached to a venous catheter which is a tube that goes into a vein in your chest and ends at your heart. Zoe has very small veins and getting an IV in to her arms, hands, legs etc is extremely difficult. The PORT has literally saved Zoe's life at times. Usually PORTs only last a few years. We have been very lucky with Zoe and hers lasted much longer. We learned how to flush the PORT monthly with heparin at home so that Zoe does not need to get this done in the hospital. This means she does not need to miss a day of school every month and also exposes her to less germs. So perhaps this has also helped keep her PORT healthy.
Zoe was worried about the procedure. She was nervous and said she felt scared. We told her everything that would happen and made sure she understood what was going on. Having Gavin go in with her when she fell asleep helped Zoe feel better. Unfortunately, Zoe did have some complications which made her immediate recovery scary and uncomfortable for Zoe. But as always, we stayed by Zoe's side and explained to her what was happening.
Zoe never had a problem getting anaesthesia before- she sedated well and woke up quickly. This time, however, Zoe woke up choking and coughing up/vomiting bloody mucus. She required a lot of oxygen and suctioning. They were not sure at first why Zoe was having such a hard time. Her recovery was complicated later by Zoe having a serious rash. The rash started on her chest and quickly spread to her whole body. The rash also caused facial swelling and so they were not sure if the trouble Zoe had breathing was due to an allergic reaction that was swelling her airway or from the anaesthesia issues. It was very stressful because it took a while to figure out. In the end, they determined that the airway issue was separate from the rash. Zoe had a harder time with anaesthesia due to it being a long procedure (took 3 hrs) and her lungs which are worse now then the last time she got anaesthesia. As for the rash- they are not sure what caused it. They think Zoe's reaction was more of an immune system reaction then an allergic reaction. She had been given so many medications during the procedure and then afterwards to help with her airway issue. So they think Zoe's system just had enough and freaked out a little.
So what does this all mean? Well, Zoe has an MRI next Friday so if this happens again, we need to do some serious investigating. But if Zoe does fine, wakes up easily and has no rash, then we know the immune system response was responsible. They are going to use a different contrast in case that irritated Zoe's system, the procedure will be much shorter, and Zoe has an overnight bed booked, just in case.
Getting Ready for Baby
Both girls are very excited about the baby coming soon- I am due in five weeks but who knows when this little one will decide to pop out. Zoe loves lying against my stomach and feeling the baby kick her stomach. She laughs and laughs. Ailsa loves running up to me and slamming in to my belly to say hello to baby- little less comfortable than Zoe's snuggles but Ailsa always has been more firm in her affections.
Selfies are always hilarious!
Ailsa set up a complicated game with many parts which primarily involved Zoe shoving Ailsa's doll down the slide for Ailsa to catch. Zoe thought it was especially hilarious when the doll fell off the slide! I love these games that Ailsa comes up with to play with Zoe. Zoe is always a willing participant and just laughs even when it does not seem to make a lot of sense to the rest of us!
July 2011- Ailsa with Zoe in the emergency room just before Zoe was transferred to the Critical Care Unit. Zoe was restless and settled down as soon as we put Ailsa in bed next to her.
Zoe's Birthday, February 2012- Zoe had another rough stay in the Critical Care Unit and was moved to the regular floor just before her birthday. Zoe was pretty tired and not feeling great but as soon as we put Ailsa in bed next to her, Zoe smiled.
March 6, 2017- Zoe had to return to the hospital and was readmitted for a bladder infection and needing oxygen again due to yet another viral illness (Zoe tested positive for two respiratory infections this time!) In the emergency room, Ailsa had watched, held Zoe's hand and hugged her while she had a catheter inserted in her bladder and needles poked in her chest and arm. Ailsa knew that Zoe would feel better if she hopped in bed with her after. Ailsa climbed in bed with Zoe and she immediately started laughing and smiling. I hope those laughs and smiles made both girls forget the pain.
It never surprises me but continues to amaze me to see the close bond my girls have. It breaks my heart when Ailsa cries and misses Zoe (and when Zoe misses Ailsa) but I am so glad that the girls continue to have such a great relationship despite age difference, disability, communication differences, illness, etc.
Zoe is home now. She spent the week at the hospital but has been home this week for March Break. We were supposed to go away for part of the week but with Zoe just out of hospital and needing lots of rest, we decided to stay home and have a "staycation." Although Zoe is having a lot of chest pain and needs extra sleep, we have still managed to go out and do some fun things- skating, going to a movie, puppet show at the library, etc.
10 years ago today I took on the most all consuming, scary and painful job I have ever had.
10 years ago today, I became a mom.
Zoe entered this world with a bang. Or rather it was the total silence of her entrance that was so disturbing. Grey and lifeless with a cord wrapped around her neck multiple times, Zoe unwillingly entered this world. It had been three long days of attempting to be induced. Attempting to get this baby out. Attempting to push an unwilling Zoe in to this world.
Here she is.
And here we are- 10 years later.
As I listen to the gurgle of the oxygen machine in this hospital room I can not help but think of all the days we have spent at this hospital. And a few other hospitals. I sit with these thoughts for a moment, but only briefly.
Mostly I think of all the other days Zoe has been a part of our lives.
I think of how silently Zoe entered this world.
And then I think of my Zoe- vibrant, full of life, rarely ever silent. Yes, Zoe is non-verbal but she is not silent any more.
Her grunts and squawks are constant.
Her movement is constant.
Her curiosity is constant.
Her life is constant.
And if you have a child like Zoe you sometimes wonder how long this life might go on.
How long can she last?
How long can we last living this vibrant, scary, wonderful life?
None of us ever know how long. And so doctors can make their guesses. We can make our guesses. But in the end we only have this moment.
And in our case, we have had 10 years of these moments.
When I saw the lifeless and silent baby in that hospital room 10 years ago I did not think we would get so many moments.
2016 was a pretty good year. Actually a great year for our family since it was the first time in 10 years that Zoe was not in hospital overnight!!!!! And everyone else behaved themselves too. Gavin has been back at work for some time now and doing really well. Considering all that his body has been through we have been incredibly lucky and we still continue to see gains. Ailsa continues to do well on her kidney medications. Her disease is progressing more slowly than they originally predicted. And I am doing pretty well too.
Sooooo, since life is going so well, we thought we would pick up the dice and give them another shake and take a big fat chance again:
The girls came up with a way that they wanted to share our good news.
This photo was taken recently.
This photo shows what will happen around June 3rd!
To answer your questions-
Yes, we are pregnant!!!!!
No- it is not triplets.
Just one happy active baby kicking around in there.
We are all very excited!
Other exciting happenings:
Ailsa started hockey again in October. She loves playing and Zoe loves watching her!
We had two Bat Girls this Halloween. Gavin did an awesome job turning Zoe's wheelchair in to the Batmobile.
Grandma Sheena enjoyed tobogganing as much as the girls....ok maybe not as much as. It's not easy walking back up that hill while pulling Zoe in the toboggan!
Christmas Day- the girls were very excited to get the Canadian Girl dolls they had been asking for since September. Both girls have been consistent in which doll they wanted, which outfits, etc. Not surprisingly the hockey outfits (with all the gear including helmets and metal skates that can actually go on ice!) were first on the list. The Canadian Girls have to travel everywhere with us and Ailsa loves saying we now have four girls in the family. Thankfully we have enough seat belts in the van!
Zoe and Ailsa went cross country skiing for the first time during Christmas break. We weren't able to get Zoe on the skis this time but she loved skiing with daddy. In general, Zoe is not a big fan of cold weather but she does enjoy fast activities outside like tobogganing and now skiing.