A Night Away and Lots of Equipment in the Works

Gavin and I went to a hotel last night while Zoe's respite worker, Lyn, slept over to care for her. We haven't done an overnight since last....September, I think. It was great to get some time alone, but how quickly the day/night went. We are again looking into other options for respite. Lyn is wonderful and takes great care of Zoe, but expensive compared to a group setting. Luckily, we get a set amount of respite money from the province to spend however we want. So we are able to have Lyn come once a week. With Gavin working so much, I have used the time to run errands, clean the house, laundry, etc which is not very restful. We are checking out a group situation where Zoe would go to sleep over for the weekend. We are impressed with how well they feed, bathe, and care for Zoe but the one piece that is a little lacking is the developmental play. We want to be sure that Zoe gets appropriate stimulation otherwise she will end up very frustrated and bored. We tease her preschool teachers that should open up a home on weekends and perhaps one of these days we just won't show up to pick Zoe up Friday afternoon!

Equipment

Hearing Aids:

Zoe continues to react in non-typical ways to her hearing tests and it is difficult for them to assess whether she has moderate hearing loss or is just not responding the way they want her to. We know from early tests that looked at her nerve function that she does have mild to moderate hearing loss on the one side and they were never sure about the other side. At this point, they recommend that we do a trial with hearing aids to see if it makes any difference. Gavin is looking at setting up an appointment for Zoe to get ear molds made. These molds would fit a variety of hearing aids so it is something we have to purchase outright. The aids themselves, once we figure what will work best, is thankfully covered by ADP (Ontario's Assistive Devices Program). ADP covers 75% of the aids and we think our insurance will cover the other 25%.

Wheelchair:

The other big purchase we are looking at is a wheelchair for Zoe. Shelby's mom gave us Shelby's old wheelchair stroller which has worked great for the last year and a half. However, Zoe's PT and OT do not think the chair works for Zoe any longer. She does not sit properly in it which misaligns her spine and puts pressure on her lower back. We are waiting to be seen by a seating clinic at Bloorview (the rehab centre Zoe gets therapy at). We will see what they recommend. Again, ADP and insurance should cover that which is great since those chairs typically cost anywhere from 3 to 6 thousand!

Play Chair:

We are also looking for a new play chair for Zoe. For a long time we borrowed a corner chair which was great. It was amazing to see how Zoe developed and was able to play because of the support the chair gave her. When she outgrew that, she used the seat of the wheelchair stroller in a special base called a spider base. The spider base moved up and down so we could adjust Zoe's height. And it had a tray so Zoe could easily play. It has worked great, but now that the seat is not right for Zoe, we have to look at another option. We borrowed a Flip2Sit, which we liked. You can check it out at:

http://www.bloorview.ca/bloom/flip2sit.html

The Flip2Sit was actually developed by people at Bloorview and it worked really well for Zoe. The straps go across her upper thigh so that she needs to support her trunk and upper body. It means more work for Zoe, but we could see how quickly it was building her core muscles. Initially, she was only able to sit in the seat for 5 or 10 mins. After two weeks, she was up to 45 mins as long as we put a table in front of her with toys so she kept busy. The chair is very easy to transport which is nice (the spider base chair is very large and not so easy to transport). I even imagine bringing the chair to the beach so Zoe can play in the sand (she LOVES sand) without us needing to hold her. Sounds perfect right? Only problem is that this type of equipment is "not necessary" and therefore not covered by ADP or our insurance. Which means paying the $400 out of pocket. We want to be sure this is the best seating system for Zoe. We don't want to spend the money and find out that she will quickly outgrow it. We don't anticipate that she will outgrow it quickly since she grows so slowly. Another really nice thing about the chair that other chairs we have looked at do not offer is that the way it supports her is the same way we support her when working on sitting on the floor. We sit behind her, support her upper legs, and try to stop her from flinging herself backwards. Obviously, we can not sit behind her all day long so it would be great to have a chair that does this for us. I think it would really help her to build up her core strength.

Zoe playing in the Flip2Sit. The "table" is a sick tray that we had already and it fits perfect as a table for Zoe.

Bath Chair:

And lastly, we were approved for funding for Zoe's bath chair (Thank You Easter Seals!). At $700 and not covered by ADP or insurance (again, not a necessary item....don't get me started on how bathing your child in a safe way is not necessary!) we are very happy the funding came through. So now we just have to wait for the chair to be delivered. We are also looking at getting a very large sink which will basically be a raised tub in our master bathroom. Bending over the side of the tub while lifting a wet and wiggling Zoe is proving to be hard on our backs. Even with the chair, we will have to bend to put Zoe in and take her out of the tub. The chair does raise her a little bit but the main reason we got it is to make bath time safer. Zoe has a habit of throwing her head back in an effort to drink the water. Which is what a lot of kids her age like to do- nothing more fun that drinking dirty bath water! However, since Zoe is not able to sit up, she then chokes on the water. After having Zoe turn blue and unresponsive as a result of this bathwater game she likes to play, we decided we better get the chair. At this point, we know that Zoe will continue to need full support while bathing for a very long time. So it is time to adapt the bathroom.

Fun Equipment- Adapted Toys!

We have also adapted one of Zoe's toys with a switch. Zoe had gotten a penguin slide (those old fashioned ones where the penguins climb the stairs and then go down the slide) as a gift and loves it. She has gotten the hang of holding down the switch button so the penguins do their thing. We had an extra switch cable so we adapted a dog that she absolutely loves. The dog sings and flaps its ears when Zoe hits the switch. It is great that Zoe understands how to operate these toys. It opens the door to lots of fun possibilities in the future.

You can see the yellow switch to Zoe's left. It is very easy to operate and turns on with the slightest touch.

We Miss You, Grandad!

Gavin's dad (Alan) left Tuesday after staying with us for the past two months. It has only been a few days, but we miss him already! Alan had taken a sign language class before visiting and I think that really helped him connect with Zoe. Zoe's signs are still difficult to read at times, but knowing the language certainly helps. Zoe had a great time with him- going for walks in the wagon, swinging in the backyard, or just playing around the house.

I certainly miss grandad today since Gavin is working this weekend (again! Gavin has worked every weekend except two since last August). Alan was a big help on weekends. After working all week, it is exhausting caring for Zoe on the weekend. She isn't the type of kid I can pour a bowl of cereal for and set her in front of the TV or tell her to go run around in the backyard by herself. Alan is always willing to unload the dishwasher, throw on a load of diapers, watch Zoe while I nap or run errands, etc. (Not to mention the huge accomplishment of insulating our basement headers! A project we have been working on since Alan last visited in November). We don't have any family in town, so it was really nice to have him here. It is amazing what a difference it makes to have that type of support.

I think Zoe was really missing Alan today because she kept signing "daddy" and then "grandad" repeatedly while making a sad face. I gave her some snuggles while she cried and signed their names. She even produced a tear while crying! That is only the second tear we have ever seen in Zoe's lifetime. After a few minutes of snuggling and crying she went back to playing. I think she just needed to express how she is feeling.

We hope this post doesn't make you sad, grandad. We just wanted you to know that miss you!!!!!

Colours and Behaviours

Zoe Knows Her Colours!

For the past few months, we began to notice that Zoe knows some of her colours. It started with just red and orange and she sometimes recognized yellow. I figured they were teaching colours at pre-school and didn't think much about it.

Then, a couple of weeks ago I tested Zoe. I noticed right away that it is best to test Zoe with two of the same objects. Otherwise, she just picks the object she likes instead of pointing out the colour I am asking her about. Our friend Patrick had given her an ice cream game for her birthday that has ice cream scoops of different colours.

And so I tested her. First red, then orange, yellow, green, blue....wow Zoe you know a lot of colours! Then brown, black, white, purple and I ran out of similar coloured objects to test her with. At one point we tried to get tricky with her and put two objects down that were not the colour we were asking for and Zoe got mad and slammed her hand down as if she was saying, "Don't try to trick me!" We also tried three objects at one time but noticed that Zoe got very disorganized and was not able to concentrate on three choices at once.

Zoe enjoys playing this colour game now and will even sometimes point out the colour that I am asking about and then take the other toy for herself to play with. As if she is saying, "Here you go mom, you said you wanted the red one. I am going to take this other one to play with."

I was curious so I asked school about it. I thought they were sitting the kids down and saying, "This is red. We are going to paint with red. Can you find the red truck? etc" but it turns out that they are just talking about colours as they are doing other things. So Zoe (like the other kids) is just picking up the colours from conversations and play. Which is great because that tells us something about Zoe's learning style. After we learned this, the teachers have been testing Zoe too and they agree- Zoe can correctly identify all of her basic colours.

What Else is Going on in That Head of Hers?

Then it got me thinking- what else is Zoe thinking about that we have no clue. And so we started finger spelling. So far the only two words Zoe consistently correctly identifies is "dog" and "Allison" (her teacher from school). I think it is hilarious that she recognizes dog but can't spell her own name!

Zoe has also been trying to identify adults when talking about her teachers at school. For example, she used to sign "mom" for her female teacher but now signs "girl." The other day when she was walking around the hospital, I noticed that when she passed a man she immediately signed "daddy" as if she was saying "He's like daddy." So we are working on "boy" but that takes more fine motor coordination than "girl."

If you ever see me on the subway with Zoe then you may think I am just crazy. The conversation goes something like this:

Zoe signs "daddy" while looking at a man.

I respond, "Yes, that is a boy like daddy."

Zoe signs "kiss."

I respond, "No, we don't kiss strangers" at which point the man begins to look uncomfortable and is thinking "what a nutter, that kid isn't saying anything."

If the person is eating Zoe will sign "Zoe eat."

To which I have to respond, "No Zoe, that is not your food." Again, the stranger looks at me like I am nuts.

What people don't understand is that I can't just ignore Zoe's questions and requests. First of all, she would get really frustrated. And secondly, she is persistent. She will just sit there repeatedly signing "kiss, kiss, kiss, kiss" until I tell her "No you may not kiss that stranger who happens to be a boy like daddy!"

Zoe Able to Control Herself

The other thing we have been working on is helping Zoe identify how she is feeling and to help her appropriately express those feelings. And Zoe has done amazing with controlling herself. For example: Zoe will sometimes pull our hair or pinch our faces when she is very excited to see us. So we will say, "Be gentle Zoe" while taking her hand and gently touching our faces with her hand. Now, we can say "Zoe, what are your hands doing?" And Zoe (usually) will immediately stop being rough.

Another example is the other night Zoe was angry at me for making her go to bed. She kept signing "angry/grumpy" and "mom." (Yup, she likes to let me know that I am the one she is mad at- gee thanks kid!) When I started to put her in her bed, she leaned forward with her mouth open to bite my shoulder. I said, "Zoe, what are you doing with your mouth? Can you make a good choice here?" She immediately leaned her face away from me and again signed "angry" while making a sad face. I thanked her for telling me how she was feeling by using her words instead of biting me.

As her mom, it gives me great hope that Zoe is aware of her behaviour and that she can control it. Zoe will even follow directions (like go into your room to get ready for bed) when she obviously does not want to. I think that is pretty impressive for a three year old!