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.

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.

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!

The Importance of Hope

While speaking with my friend Michael about coping with having a permanently disabled child (he has an adult daughter with Down Syndrome who is fairly high functioning but still needs a lot of support), he mentioned the importance of parents having hope and dreams for their children. He spoke of the grief process parents go through that have disabled (I hate this word by the way- perhaps I should use "exceptional" like a magazine I read uses) children. When you are pregnant, you have all of these hopes and dreams of what being a parent will be like and what that child will be like. When you have an exceptional child, you grieve the loss of those dreams. It has been a process for me that I am happy to say I am starting to cope better with. I feel as though there was such a loss but then such a gain. A loss of what I had hoped for but such a gain of recognizing how wonderful Zoe is. I can see how amazing and wonderful she is and I can celebrate every little milestone. If I had a typical kid, I probably would not have noticed all that is involved in every little step. Typical children develop so quickly. You blink and they are running around. Our kids (1P36 kids that is) develop at a much slower pace. And yet, I feel as if I blinked and Zoe is almost two. She is rolling around, signing, using her hands, smiling, etc. I can remember the difficult early days when we weren't sure if Zoe would even be able to smile, laugh, or feel happy. And now look at her- her toothy grin makes me laugh every time. And so it is a loss but such a gain so that I am now able to appreciate the gains and let go of the loss.

But my friend pointed out something I had not thought about. Even though I celebrate every milestone and I support Zoe in her next step, I do not allow myself to dream or hope for her. I do not put a time on when I think she should achieve the next step (which I think is a good thing since she will get there in her own time). So how do I balance being realistic in my expectations and being a mom and just dreaming a little for her? I know in my heart she will sit up, stand, and walk some day. Is this dreaming or just expecting what potential I see to develop? Many people focus on the fact that Zoe is non-verbal and try to reassure me that she will speak some day. I am so happy that Zoe can sign. To me this is amazing. It breaks my heart that she can not yet sign as much as she would like. I can see the frustration when she is trying to tell me something but does not yet have the words. (This of course being a normal experience of all parents with their toddlers but I guess a little more heartbreaking to think she may never be able to tell me these things). But I see some of the older kids (ok, just one of the older kids) who is getting fluent in sign. Whitney reads, finger spells, knows more words than her parents. She is amazing. And so I guess I hope for that too. That some day Zoe will be able to better express herself in sign. I do not dare hope for verbal language to come along. Why? I guess a few reasons- first and most importantly, Zoe may never speak verbally and I do not want to waste my time hoping for something she can not achieve and have her feel like a failure. Second, I think our society focuses on judging a person's cognitive capabilities based on their verbal communication skills. We assume if someone can not speak verbally they must be dumb. And so I do not want to play into that. If Zoe can some day speak verbally, great. If not, that is ok too. Yes, I must admit I sometimes dream of the day she will speak "mama" but seeing her sign "mama" is just as amazing. To know that she knows who I am and can ask for me is just amazing. It is more than I would have hoped for this time last year.

And so Michael, here is a little dream for Zoe. Right now I am sick- home with fever and flu on Friday and still feverish today. So many things on my to do list that I just want to scream or go back to bed. But I put all of that aside and instead use my mental energies to think about our recent OT visit. The OT mentioned getting a pony walker for Zoe. I told myself, "Don't get your hopes up. Don't even look into it. Zoe is probably too small to fit one. Zoe probably can't coordinate her movements enough to use one." But I put all of that aside and I dare to dream and hope that we do get a pony walker. We looked it up on the internet and Zoe is just big enough now for the smallest size. We may have to put her boots on so she can reach the seat, but she should just fit. And in terms of coordination, perhaps she won't be able to use it. But can't a mother dream a little? Here is a blog that has some great pictures of a child (not a child with 1P36) in a pony walker (I don't think this mom would mind me linking to her blog- she is an amazing mom by the way with two beautiful daughters. She has some great posts on grief, acceptance, other people's comments, etc). I will also link to the video of her child running in the walker. This child was two when she got her walker, but she was higher functioning in her fine motor development, coordination, and expressive capabilities. Also, when the video was taken I believe she had the walker for four or five months. So I know this is not what Zoe will look like. But still, I do dream of her cruising around our house (now I am really glad we thought ahead and got a one floor bungalow with lots of wood flooring) and maybe some day chasing her classmates or her cousins.

http://micropreemietwins.blogspot.com/2007/01/pony-walker.html http://micropreemietwins.blogspot.com/2007/06/who-are-you-calling-poor-baby.html#comments
http://www.adaptivemall.com/ponysize0.html

The OT will be back on Tuesday to let us know what she has found out. She is hoping to get one on loan for us since they are expensive and we are not sure if Zoe will be able to use one or not. One issue is that Zoe arches her back (which is why she can not use a bumbo chair that many of the other 1P kids use). It looks like the trunk support should come up high enough to keep her from arching back too far. Also there is a possibility of getting a head rest if need be. The other issue is that she scrunches her feet up instead of keeping them on the floor. But she is doing this less and less now and she enjoys standing. She actually signs "more" during therapy when we are doing the standing. Sometimes she cries since it is so much work to stand but then immediately signs "more" after she has a rest. So I think she would really enjoy standing and getting around. We'll see.

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Doctor's Visit and Cake Fun

Great News from the Doctor
We went in for a weight and lung check and found out that Zoe has gained back the weight she lost (and then some!) and is now 8.47kg (18lbs 10oz). And even better news- her lungs sounded "great" and "clear." So we are definitely celebrating tonight!

Great News from the Opthomologist on Monday
More great news to share- Zoe's opthomologist on Monday was very pleased with her vision development. He feels that her visual development is now on the same level as her overall development. So, she still has vision loss and her vision is still delayed for her age, but she is doing really well. She will continue to wear her glasses and do vision therapy. Both seem to be really helping.

Videos/Photos from Christmas
We are working on picking which photos and videos to post but in the mean time we wanted to share all the good news. We will be posting photos from Christmas soon. For now, here are some cute ones of her with cake.

Fun with Mommy's Birthday Cake
Last year, Zoe did not show much interest in her birthday cake. She was not self feeding at all and was not using her hands as much. Last week, Genevieve had her birthday and put her cake on Zoe's tray. Zoe immediately smashed her hands into the cake, then her face, and then threw it on the floor. We were so excited!!!! Here are some pictures of her enjoying the cake.

You can see that left hand is ready to drop the cake on the floor. She is eating with a whole lot of attitude these days....we love it!


Zoe still needs a little guidance in getting the food into her mouth but she is getting there.

Happy Christmas Eve

A tired Zoe gets ready for bed.

Zoe is all tucked in for the night. We got her dressed in her special Christmas Eve nightgown, hung the last ornament on the Advent tree, and hung up our stockings.

For those who celebrate, we hope that everyone has a great day tomorrow. We look forward to spending the day as a family. We are grateful that our families were understanding of our need to have it just be our little family of three this year.

Merry Christmas Eve to all, and to all a good night.

Update on RDSPs in Canada

Government finally makes RDSPs available- BMO only bank to offer it
After a year of reading about and being promised that RDSPs (Registered Disability Savings Plan) would be available in 2008, the government finally made RDSPs available. We had the choice (is it a choice if there is only one option? I think not) of going with BMO. The RDSPs became available on December 22, 2008 and you have to contribute before December 31, 2008 in order to get the grant for 2008. What this means is that we had to go to BMO, set up a profile, speak to staff who had no idea what they were doing and actually were incorrect in that they did not take Gavin's info which means he has to go back today. Then we had to call a 1-800 number (the same number that all Canadians were using and no, they did not have extra staff on hand to handle the extra calls) and wait 80 minutes to talk to an investment agent. I have to say, that when we did finally get through, the person was knowledgeable about RDSPs. So that was helpful. He emailed us the forms, we filled them out and faxed them today. According to the guy we spoke with, as long as BMO gets the paperwork by December 31, we will get the grant money. It does not matter if the actual RDSP is not set up until after the New Year.

They don't seem to have some kinks worked out quite yet. When I asked how we will know that they got the fax, his response was, "We haven't figure out how we will be contacting clients." He said we could call again and wait in line for another 60-90 minutes to speak with someone but they may not know because some of the accounts will not be in the system until after the New Year. When I asked how we can make deposits in the future, he recommended calling and giving the account number and password. On the forms we set the password but how can we know the account number if they don't contact us? His response, "We haven't figured that part out yet."

And so, in blind faith we have faxed the forms. Hopefully all goes well and Zoe will have an RDSP opened in her name.

Good News from Ontario
The good news is that Ontario has declared that a person receiving money from an RDSP will still be eligible for full disability support. We are setting up our assets in what is called a "Hensen Trust" which also does not affect disability payments. By leaving Zoe our money in these ways, she will still be able to get support from the government as an adult and use our money for the extra things like new clothes, travelling, hockey tickets, whatever she wants. If we did not set up this special trust and just left the money to Zoe, she would be disqualified from getting any public supports. It gets complicated when you are trying to think about all of these future things for your child who will be disabled and most likely unable to support themselves. I think Gavin and I are both relieved that the Hensen Trust will be finalized soon and that the RDSP has started.

Where to go for more info about RDSPs
If you are interested in setting up an RDSP for your child, go to http://www.rdsp.com/
Also, I have the forms from BMO, so if you don't want to wait in line on the phone, I can email them to you. Just let me know.