Thursday, April 27, 2017

Yikes- we got a preteen!!!!

Dealing with Boys Already???

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!

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