Thursday, January 28, 2010

Rough Night/ Rough Winter

Zoe Sick Again

Zoe has another cold. Like aways, it seems to take her weeks to get over it. We were very lucky that her MRI happened when she was actually well. We were at the doctor's yesterday and the good news is that her lungs sound good. So hopefully she will fight this one off without too much medical intervention. The high fevers (spiking over 39 C/ 102.2 F) makes me a little nervous since that is with Motrin and Tylenol around the clock. We were told to return Friday morning if the fevers did not go away. Since they are getting worse (she was just 39.6 C/ 103.3 F with Motrin on board), we will be heading back to the doctor's in the morning.

Not Blogging Much

We haven't blogged much lately since we have been having a rough winter. Although this winter does seem a little better than last (knock on wood!). Zoe has been making some amazing communication/cognitive gains- she knows some of her colours, is making choices, understands consequences, is following two step commands, etc. At the same time, Zoe's physical development is progressing very very very slowly. She is still not able to sit on her own and can not scoot or crawl at all. She does amazing in the walker and we try to have her in it as much as possible. It is like she is a different child- she strides around the house in complete control and in charge of where she wants to go. She does get frustrated that the toy she worked so hard to get to falls on the ground and she is not able to pick it up.

Conference Plans for Salt Lake City

The conference will be held in late July in Salt Lake City this year. Plans are under way and we are looking into costs. We really want to go again this year. We get so much out of being around other 1p36 parents. It's hard to think ahead right now since we are struggling to get through the day. But it does give us something positive to look forward to.

There are lots of positive things to focus on.

Lots of negative things too.

Which I guess is why I haven't posted much lately. It is too easy to focus on Zoe being sick all the time right now. Or to ignore that and focus on the more positive gains she is making. I feel like it does not really give a picture of what life is like right now. But I guess that is how it is for everyone.

And so I post to keep people up to date.

Saturday, January 16, 2010

MRI and Tear Duct Plugs


Zoe has been due to get another MRI since October 2008 to check on the status of the syrinx in her spine. In the fall of 2008 we met with anesthesia to discuss the difficulty people have with getting an IV into Zoe. During her MRI at six months of age, they were unsuccessful (after more than 20 tries) to get an IV into Zoe and therefore proceeded without IV access. This has a lot of risks to it. So in October 2008, they decided to hold off until fall 2009. We were set to bring her in for her MRI last November, but since she had H1N1 in early November, they did not feel comfortable giving her full anaesthesia. So again, it was put on hold.

On Wednesday this week we got a call that they booked Zoe for Friday morning. Zoe was healthy (as healthy as Zoe gets which means occasional fevers but her lungs sound clear) so we were able to go ahead with the test yesterday.

They were able to get an IV in on the third try. They seemed unhappy about this (Zoe was given anaesthetic air first so she was asleep and I guess they are used to having more success with IVs when the child is sleeping) but we were very happy they got it at all.

Minor Eye Surgery

When we found out the test was booked for Friday, we started a flurry of emails and phone calls to coordinate with Zoe's opthalmologist. Zoe does not produce tears and despite us putting in tear gel four times a day, her cornea are becoming dangerously dry. When the cornea become too dry, there can be permanent damage and blindness. Obviously, not a good thing. The original plan was to put tear duct plugs in the bottom two tear ducts. That was six months ago. Yesterday, the ophthalmologist mentioned that he would prefer to do all four tear ducts since Zoe's eyes have gotten more dry.

We were very happy that they were able to coordinate both procedures. This meant that Zoe would not have to return to the hospital to get another full anaesthetic. We had to really push for this, but we were very happy that they listened in the end and were willing to do what is best for Zoe.


If I haven't said this before, Zoe is amazing. She was groggy and a little grumpy yesterday but did great with recovery. I think she was having some bad dreams because she was whimpering in her sleep and wouldn't settle down until one of us held her. But she ate and drank great. And last night she slept most of the night.

Zoe is so tolerant of not feeling well. At one point when we were making dinner, Zoe made a noise so I went to help her with her toy. She squawked at me, pointed at a small puddle of puke on her toy, and looked up at me as if to say, "Mom, get that puke off my toy." I wiped up the puke and Zoe went back to smiling and playing with her toy.

I tell you, she really is amazing.