Wednesday, February 18, 2009

Zoe walking

Yesterday, as it turned out, was an unexpectedly good day. We had an appointment with the equipment vendor to drop off a sample VASI stander and Pony walker for Zoe. The stander is to promote weight bearing and trunk strength- the Pony walker is to provide Zoe with a means of mobilization and getting around her world. We don't anticipate her having the strength to walk independently or with a more traditional walker/gait trainer for some time, but want to be able to give Zoe a way to independently get around until then. We had anticipated she would hate the stander initially, and maybe just kind of sit there in the Pony walker. Our unrealistic ideal parent dreams, of course, were that she would immediately start using the walker to move around wherever she wanted, but we didn't really expect that. Well, to everyone's great surprise, that is almost exactly what she did. After happily being in the stander and playing at our coffee table for about 15 minutes she indicating she was tired so we put her in the walker. Her very first time using it she was able to move across the room to where I was sitting several times. Lucky for us Genevieve managed to arrange to come home from work early and arrived just made it in time to see Zoe's first steps! Later that day when her OT was here Zoe was able to move twice across the room to deliberately look at our fish tank-she seemed fascinated by them. Everyone was amazed by how well she did, and our parental dreams were, on this occasion, fulfilled. It was still really hard for her, and she is very unsure about initiating the movement, but it is a great start!

This video is from today, her third trial at the walker. The lady in the edge of the picture is Riane, our wonderful respite worker who was able to come in this morning to give me a bit of a break. Genevieve was hard at work and missed the fun.

video

The song is "I'm gonna be (500 miles)" by The Proclaimers.

Those of you who know Zoe, or know our 1p36 kids, know how amazing a moment this is. It happened 4 days before her second birthday. We are so proud and excited. For Zoe to be able to move herself around and seek out what interests her is a huge goal for us, and this is a huge step toward that.

The other excellent piece of news the equipment person gave us is that as this is Zoe's first equipment claim the Ontario government agency which pays for 75% of equipment costs (Assistive Devices Program or ADP) would likely have no problem approving the claim for the walker and stander (and hence paying for it). The equipment company would be confident in ordering the stuff as soon as we paid them the outstanding 25% (which we then claim back from our extended insurance coverage). So that will mean the waiting period, once we decide for sure what we want, should only be about four weeks at the most. This is very exciting!

So Zoe is still sick, and not drinking much, but we are very encouraged by how well Zoe is doing with these new challenges. We are so proud of her.

quick update

Zoe is doing a bit better. We went to the doctor yesterday and Zoe had gained three ounces from the day before. Under normal circumstances (if such a thing exist) this would be incredible, but it probably only reflects the replacement of lost fluid thanks to the syringe feeding we were doing. Thankfully we don't have to do this anymore for the time being- Zoe hated it and now seems to be on the mend (knock on wood). We go back Friday. So with any luck she is getting over this most recent illness, and now will hopefully be able to put back on the weight she lost. On the up side, Zoe is in pretty good spirits and looks good- a little clingy and off her eating, but still pretty happy. So that is good.

Monday, February 16, 2009

Happy Family Day at the Doctor's Office

So it's Family Day here in Canada and naturally we spent the day doing what we do a lot as a family- going to the doctor with Zoe! Zoe has a gastro infection and is getting dehydrated so we had to take her in. When the doctor weighed her, we discovered that she lost over a pound in the last three days. The doctor advised us to start syringe force feeding her and if she does not take in 24 ounces in the next 24 hours, we have to take her back tomorrow to discuss IV or NG tube hydration.

Arrrgghhhhhhh!

We just got the weight back on that she lost with the pneumonia! She is having a very tough winter. We are so sick and tired of worrying about weight loss and force feeding. Zoe, as always looks good though. Through all of this she is playing and mostly happy. The skin on her feet is beginning to wrinkle and turn dusky from lack of blood flow but if you looked at her, you would have no idea this is a kid who has lost 5% of her body weight and is dehydrated. She is amazing and so resilient. That is what we keep reminding ourselves. If we can just get through this winter perhaps the spring/summer season will be easier for her.

An Update on Equipment
We haven't had time to write with Zoe being sick but I wanted to give an update on the equipment. First, our friend Erin (whose daughter also has 1P36) gave us a seating system/special needs stroller. We are not sure if Zoe will need this but we took it to try it out. The place that has loaned us Zoe's corner chair for the last year needs to take the chair back. So we are going to see if the seating system is a good replacement for the chair. If not, we will look into purchasing a corner chair. Zoe has really gained in fine motor skills from having the support of the chair and we don't want to lose those gains.

Second, the pony walker and stander are scheduled to be dropped off tomorrow (if we are able to be here instead of the doctor's office) so we can check them out for the next week or so. If they work for Zoe, we will order them. It takes 6-8 weeks to get the government approval so they will pay 75%. Then we are hoping our personal insurance will cover the other 25%. We are frustrated that it will take several months to get the equipment that Zoe would benefit from now. But I guess that is the way the system works. We are supposed to think ahead by six months but how are we supposed to know what Zoe will need in six months? At this point I can barely think six hours ahead, let alone months!