Ailsa Rebecca

Zoe's Little Sister

Zoe would like to introduce you to her new baby sister, Ailsa Rebecca! Ailsa was born May 15th at 3:22pm. She weighed a whopping 8 pounds 3 ounces- a full three pounds more than Zoe had! Length was 50cm/almost 20 inches. Both mom and baby were doing so well that we were able to go home that evening. The midwives have come to the house every other day to check on us.

So far Ailsa is nursing well and has even gained back a little bit of the weight she lost. It has been so amazing to have such a typical newborn baby experience this time. We find ourselves laughing at ourselves when we act like new parents who have never done this before. Initially Ailsa needed a lot of holding or else she would start crying. And boy, can she cry loudly! Zoe would then sign "baby sad" and start crying too. Luckily we remember all the sensory things that helped Zoe calm herself and Ailsa seems happy with the same techniques- lost of bundling, swinging, holding, and the weight bag on her chest.

So far Zoe seems unsure of what to make of Ailsa. She gets upset when she cries most of the time and then other times she just laughs at her. She finds it very funny when I am feeding her and will keep signing "baby eating." She loves touching her face and head. When we were giving Ailsa her first bath, Zoe helped by washing her back with a washcloth. She also had a sympathetic look when Ailsa was crying and reached out and gently stroked her hand. It was very cute.

Ailsa is settling down and learning to sleep in her own bed. She has taken lots of naps in the last two days which gives mommy lots of rest time.

Zoe playing with one of her big sister presents.

Daddy makes holding his two girls look easy.

School News

Zoe's School for the Fall

We've now completed the process for enrolling Zoe in school for the fall. It is hard to believe she will be starting full time Kindergarten this year! After finding out that the Integrated Therapy Program (at Bloorview, the local pediatric rehab hospital) would not accept her, we were feeling very anxious about Zoe's placement. But we are quite excited about the school Zoe will go to.

The process here is that we have to officially enroll Zoe in the local school, they have to recognize that they can not meet Zoe's needs, and then we have to have an IRPC meeting (Identification, Placement, and Review Committee). At this meeting they identify Zoe as having "exceptionalities" and therefore qualifying for special needs assistance/programing. The hilarious thing is after the meeting Zoe came out having a "physical disability" on the paperwork and that was it. Since we know that speech delay and communication disorder are other diagnoses we found it very interesting that they only focused on the physical. I guess they have their reasons because certain schools accept certain disability labels. So we had to just sit back, sign the paper, and hope they had a good school in mind. After waiting a few months, we finally heard back from them and they recommended the school that we actually wanted as our first choice. We were worried they would try to send Zoe somewhere with less support and we would have to fight with them but in the end it all worked out nicely. Wow- imagine that for a change!

To Include or Not Include

Ideally, both Gavin and I feel strongly about Zoe attending an inclusive setting but still getting all the support she would need. Unfortunately, we know there is simply not enough money in the public system to give Zoe everything she needs without sending her to a special program. Our attitude is, as long as Zoe is getting what she needs- that is what is important. And Gavin pointed out that being with the children with different levels of needs is an inclusive setting since Zoe will learn from some of her peers and be a role model for others.

It is such a huge relief for us to know that Zoe will be getting what support she needs in order to thrive and learn. We know Zoe is capable of so much and it was great to have a meeting with staff who agreed!

Sunny View Public School

We went to check the school out earlier this week and are so excited about everything we saw. It literally had everything I could dream of wanting in a school for Zoe. They have such a great staff ratio-classes are usually 5-6 students with one teacher and two aides. Equipment lined the hallways, including "non-essential" equipment like adapted bikes and trikes! They have two swimming pools (the smaller one is a warm pool for students who can not be in the cooler pool), a regular gym, a physio gym, an art room, a "Snoozelen" sensory room, a fully accessible outdoor play area and a great atrium where the kids all meet up in the mornings and afternoons. The atrium has tables with adapted switch toys (Zoe loved this), a fully accessible tree house, and a fish pond! If you want to see pictures of the school, you can check out their website and go under the special places and programmes area:

http://www.tdsb.on.ca/SchoolWeb/_site/viewitem.asp?siteid=10217&pageid=11994&menuid=13576

Zoe Gets In Line

My favourite part of the whole day was watching Zoe explore the school in her walker. Everywhere was completely accessible. At one point a line of children walked/rolled by and Zoe saw a gap in the line, so she just got in line behind a couple of kids in walkers. The teachers all thought she was adorable and said, "Come on Zoe, you can come to my classroom." Well, that is all the encouragement Zoe needed, she walked right into the classroom with the rest of the kids! Looking around we could see that some of the kids are ahead of where Zoe is at, some where she is, and some behind which is perfect. We want Zoe to be at a place where she can learn from her peers as well as act as a role model. While her preschool has been amazing with her, it has become clear recently that Zoe is "the disabled" student and the school is not really sure the next steps for helping Zoe grow and develop. So it is perfect timing for her to start in her new school for the fall.

Zoe's New Best Friend

There was a little girl who was quite taken with Zoe and we saw her a few times throughout the day. At one point she asked me if I had a baby in my belly and when I said, "Yes" she asked if it was a boy or girl? I said we didn't know yet. She said she thought it was a girl baby because that is what she wanted when her mom recently had her baby brother. I said, "We will find out soon when the baby comes out" and she quickly replied, "When Zoe goes to school here in September and we are best friends, she can tell me if the baby is a boy or girl."

Well, good to know Zoe already has a friend lined up!

The Zoe Hotel Part Two

Pictures From Zoe's First Sleepover

Zoe painting a flower pot. Funny thing is that Zoe's flower is growing really well. When we told the staff this, they said they haven't had any luck with any of the flowers they planted. Zoe must just have that special touch (perhaps it is all that extra spit on her hands).

I had already posted about a respite place, Safehaven, that we recently tried out with Zoe. The first sleepover went really well. Zoe seemed to have a great time and was well cared for. So we decided to try it again this week but this time we sent Zoe for two nights.

Zoe immediately smiled and laughed as we entered the building, which we took to be a good sign. She immediately walked off in her walker to check everything out and say hello to staff. Zoe was already tired from a busy day at school so we stuck around to feed her before handing her off to staff. We explained to Zoe that this time Zoe would be spending the entire next day and the next night at Safehaven and Zoe kept laughing and smiling at this idea. So we felt pretty good when we left.

I called periodically to check on Zoe and heard what she was up to. The staff love how mobile she is in her walker. Most of the kids there are not able to ambulate at all. We were told Zoe was eating and sleeping well.

When we picked Zoe up on Wednesday she was busy playing with a staff member. I jokingly said, "Hey Zoe, chopped liver is here." She walked over to us and signed that she wanted me to pick her up. She was all smiles and laughing and after a few minutes of mommy snuggles she indicated she wanted the staff (who happened to have strings on her sweatshirt- how can I compete with that!) to hold her again. Zoe was in a great mood all afternoon and seemed to be happy to be home. She kept walking around, looking at and touching her toys. We joked that she seemed to miss her singing dog more than she missed us!

We are feeling really positive about Zoe's stay and using the respite centre in the future. We were so tired (I have been up for six-eight hours every night with contractions but no real labour) that we didn't even do much while Zoe was gone. We went out to eat, which is always a nice treat but didn't make it to the movie. My contractions are worse in the evening so I didn't feel much like sitting in a movie theatre while cramping every 4 mins. We were hoping the baby would come when Zoe was away so that would make getting to the hospital easier for us. But I guess babies don't always follow our plans!

It is great to see how secure Zoe is and how much she is able to be independent. We know that Zoe needs lots of different people in her life to meet all of her many needs. I think dropping Zoe off for the sleepover was much harder on me than it was on her! I think she really enjoyed herself and did not seem to miss us much at all. When we have done overnights before, the respite worker would come to the house and we would leave. Zoe seemed to miss us more then perhaps because she was not distracted by being around other kids, lots of staff who are kissing her butt, and new toys to play with.

We don't have any other overnights planned in the immediate future but it is really good to know that this is there for us if we need it.

Seizures in the Night

Zoe sleeping in our bed after a rough night.

Zoe has been sleeping much better for the past month or so. We think it is a combination of her seizures being under control, the melatonin we started giving her, and the strict behavioural approach we have continued with sleep habits. It has been great to put her to bed at 8pm and not have to get her again until the morning. There are many nights I can hear her rolling around but she is usually able to get herself back to sleep again. I can not even explain (unless you have lived through hearing your child scream for hours on end for months on end you may not fully understand) how wonderful this new sleeping pattern has been. We are all in a better mood from sleeping more. Zoe is back to laughing, playing, and loving school. She does not fall asleep at meals and she does not melt down in the evenings. Sleep is such a beautiful thing.

The last two nights Zoe has had a hard time due to seizures. She woke the other night and we heard her rolling around for a while and then she suddenly started screaming. As best we could figure out based on what Zoe was signing, she saw something that scared her and either her mouth was hurting (she grinds her teeth during seizures so this is possible) or she was afraid whatever she saw was hurting her mouth. Zoe is very sensitive about anyone or anything touching her mouth so we can see how this would scare her. Zoe was not able to calm down on her own so we took her into bed with us (as seen in the picture above). Last night Zoe again woke and while I was in changing her and getting her back to bed, she had a seizure and was very scared. After talking to her for a little while, Zoe was able to calm down and fell back to sleep in her own bed.

We are not sure why the seizures suddenly increased but she may have a touch of a cold or something brewing that is causing it. She seems to be sensitive to changes in her body like that. Zoe is able to sign that what she is seeing is in her head and she seems to understand this but is still scared by it. I can only imagine how scary hallucinations must be. Hopefully they will come under control again soon.

I Can Do it Myself!

Meal time has been messy with Zoe insisting on feeding herself. Her grasp has really improved so that we no longer have to hold her hand on the spoon. Instead we hold the end of the spoon to help guide it to Zoe's mouth. Zoe is doing a great job coordinating scooping and getting the spoon to her mouth while opening and then swallowing. She insists on feeding herself every meal now.
Sometimes we have to encourage Zoe to remember to slow down and swallow. Some meals she gets so silly she starts to laugh and everything just comes right back out. Certain foods are just too hilarious for her not to laugh at!

Zoe's Perfect Seat

Zoe has really enjoyed my growing belly. She finds it is perfect for sitting on and talking to me face to face. She also loves snuggling with me right now. I hope she is too distracted by the fun baby to play with to get upset when mommy's belly turns soft and is not such a fun seat.

Chewing Gloves

You can see in the picture above that Zoe is wearing soft splint gloves on her hands. These gloves are usually used to help encourage children to open their hands. Zoe does not need the gloves for this but her OT recommended them to keep her skin safe from her constant chewing. We have tried redirecting Zoe's chewing to specially designed chew toys or anything else she will put in her mouth. But at the end of the day, Zoe loves to chew on her hands. Instead of spending energy trying to break this habit and recognizing that Zoe would win that battle anyway, we have decided to look into keeping her skin intact. We tried bandages but Zoe quickly soaked these and then she had wet bandages sitting on her skin all day. Zoe does not typically break the skin when she is chewing but the constant moisture is breaking down the skin between her thumb and index finger. So these gloves are perfect since they are made of neoprene and dry quickly.

So far Zoe's left hand looks great and the right is improving slowly. We still tape socks on Zoe's hands at night to prevent her from chewing too much but she has become very clever at getting the socks off no matter how well we tape them. For those of you who have little ones who also love to chew- these are called benik splints and we have been happy with them so far. We are going to buy another pair so that when Zoe soaks the first pair (which happens by the afternoon) we can put a dry pair on. We really like the fact that they do not impair her using her fingers and hands. We do take them off for eating but that is because eating is such a messy time.

What's New?

Conversations About Baby

Zoe has been getting more excited and less patient as we get closer to the baby's due date. The other day we washed and folded all of Zoe's old infant clothing and blankets. Zoe was so excited she kept signing "baby." When it became clear that the baby was not coming, she got very upset. Zoe can sometimes perseverate on a certain thought or action. She kept repeatedly signing "Mommy all done baby. Zoe wants baby. Zoe angry at mommy." She was so upset that I finally left her alone with Gavin so that she could focus on something else other than me and the baby. We didn't talk much about the baby for a few days to give Zoe a chance to focus on other things.

Yesterday our friend Riann came over to visit with Zoe. Riann is "on call" to rush over here to take care of Zoe while Gavin and I go to the hospital. Zoe has been told this so she got very excited when she saw Riann. She kept signing baby and walked to the back of the house to where we are setting up the baby's room to show Riann. She didn't get upset or angry, but did keep signing about the baby. She shouldn't have to wait much longer since I am 37 weeks this week. We'll see...

Zoe and mommy talking about the baby. It's so hard to wait when you are 4!

Zoe finally strong enough to face front in the car!

We've kept Zoe rear facing in a special car seat that allowed her to stay rear facing despite her growing height. Her paediatrician recommended keeping Zoe rear facing longer due to her low muscle tone and her light weight. Now that Zoe is taller, staying above 20 pounds on a consistent basis, and has increased her muscle tone we were finally able to face her forward! So far Zoe thinks it is very funny to be able to see us while riding in the car. She is not able to grasp toys long enough to keep them on her lap so this has been frustrating for her. Before, we cut rest the toy on her lap and the back of the seat prevented it from falling. Zoe loves pulling on strings so Gavin tied a few ribbons for her to play with. So far this seems to be working.

Obviously Zoe is quite comfy in the car these days! And she looks like such a big girl facing forward. Zoe insisted on wearing this Maple Leafs outfit to school. It was the day after the Leafs definitely lost any chance to get into the playoffs and Zoe kept signing that the outfit would make daddy happy.

Zoe's New Highchair

Zoe has been flinging herself around in her old highchair to the point of almost knocking the chair over. After much thinking and debate, we decided to go with another commercially available high chair that straps on to one of our dining chairs. The new high chair has a five point harness so Zoe is not able to fling herself as much. It is also higher in the back so if she does bang her head, it is on the soft cushion. We chose another high chair that is light and easy to travel with since we still need to bring a chair any time we eat out. We looked at some other special needs options but felt this was the best option at this time. Zoe seems to feel secure and happy in the chair. She flings herself less (which means we are happy since the flinging behaviour and chair thumping sounds were starting to drive us mad!) and focuses on her self feeding that we continue to work on.

Zoe modelling her new chair.

Standing, standing, and more standing

We try to fit free standing practice into Zoe's daily routine. This is actually harder than it sounds since we are always working on so many things at once. We were disappointed and frustrated when Zoe's weekly physio stopped due to her not making enough gains. So we are determined to keep up the hard work at home and give her a chance to once again show everyone that she can do more than the low expectations everyone seems to set for her. For the most part, Zoe enjoys free standing at the couch even though it is a lot of work for her. She is not able to maintain standing for long but we expect her strength to increase over time.

We are also working on training Zoe's brain to be able to side step while holding on to the couch. Cruising comes so easily to most kids but Zoe's brain just doesn't understand how to do it. We had to train her brain the same way with walking forward and now she is a great walker. So we know that eventually cruising will feel less scary for her and come more naturally. It will take all of us some time and a lot of patience but we will get there eventually.

Zoe standing free style at the couch while playing. She is even using her hand and arms to prop herself these days which is a great step forward.

Any time I asked Zoe to look at me for the picture she would get so excited that she would quickly lose her balance. But she did a great job trying to catch herself.

And What is Gavin up to These Days?

Gavin has become a real handy man around the house. We both want to get several projects done before the baby arrives. The big project (putting in a large sink/raised tub to bathe Zoe in) has taken a lot of our time, energy, and money but Gavin has been learning a lot about plumping. In the midst of working on several projects, the kitchen sink (which admittedly had been leaking for months now) suddenly started pouring out water. So Gavin quickly fixed that.

I just needed to put in a brag here about how amazed I am at all Gavin can handle. He continues to do most of Zoe's physical care since I am not able to easily lift her at this time. He also continues to work 12 hour shifts in the emergency room, cook most of our meals, do all of the grocery shopping, and has been fixing up the house to get us ready for the baby. And after all of this, he still has time to push Zoe on the swing for 45 minutes when she demands it! He is such an amazing dad and an amazing husband and I know how lucky I am that we are in this together.

Gavin underneath the kitchen sink taking out the old pipes. This (like most projects these days) ended up taking more time and being more complicated than expected. But now we have a wonderful new tap that doesn't leak!

The Zoe Hotel

Safehaven

This week Zoe had her first sleepover at what we are calling "The Zoe Hotel." Safehaven (http://www.safehavenproj.org/) is a place that provides respite care for children with complex medical, physical, and developmental needs. We first checked out Safehaven two years ago but found it wasn't quite right for Zoe. Since then, Safehaven has hired on new staff and has students come in at various times to provide activities. While Zoe was there earlier this week, she made a flower pot and went on a walk outside to the local mall. They also did a great job of letting Zoe spend lots of time walking around and exploring. Zoe is better able to clearly communicate her wants now which makes it easier for them to understand what she needs. All of the workers commented on how much Zoe loves walking and being active and does not like spending a lot of time in her chair. They were also amazed with the amount that Zoe eats! We tried to warn them about her eating so they would not cut her off early and leave her hungry. Apparently Zoe clearly indicated she wanted more to eat and they were surprised how much she can pack away for such a little girl.

I felt very emotional about leaving Zoe at a respite place. While I know that we need respite and I do not feel guilty about taking it, it is hard to constantly look to strangers for this support. We have a great respite worker who comes to the house once a week. And Zoe just had a nurse start coming a couple hours twice a week. But even with that, it does not allow time for things other than getting things done around the house, grocery shopping, etc. Like today- the respite worker is here and I will be finishing our taxes. Not exactly a relaxing afternoon! We have gone away for an overnight a few times with past respite workers but it gets very expensive. We have to pay the respite worker plus hotel and eating out costs. Safehaven is partly funded by the province and there is a very small fee ($20 a day) for families to pay. Much more affordable than having someone here at the house.

I know as Zoe grows older we need to look for places like this more and more. Right now Zoe's physical care is very taxing on me. I am nine months pregnant this week and continue to have some minor issues which lead to me feeling dizzy and fainting. Which makes Zoe's care that much harder. Gavin has been doing most of her physical care and I can see the strain on him. Sure, Zoe is a small person. But try lifting her hundreds of times a day, feeding, bathing, changing her, etc. Zoe's care will only get more difficult the bigger and stronger she gets. She is strong enough to fling herself out of your arms, but not strong enough to sit on her own.

I am very happy that Zoe had such a good time at Safehaven. The last time we tried it (I think in a lot of ways we weren't ready and their programming was a little different) Zoe did not enjoy it at all. So we haven't tried it since. But it is good to know that she had a great time. She was all smiles when we picked her up. She was very tired but I think that is because she never naps as well at new places. There is too much going on and she doesn't want to miss anything. Apparently she slept great at night so that is good.

Accepting Help

I have completely accepted that we need a lot of help raising Zoe. We have learned to ask for financial, physical, or emotional help when we need it. But sometimes I do find it difficult to have so many people involved with Zoe's care. Sometimes I think how wonderful it would be to just stay at home with her and not feel overwhelmed by her needs. I imagine what it would be like bringing her to the park and watching her run around on her own. Or telling her to go play while I clean the house. I imagine the sounds of the occasional family guest or friend visiting rather than the constant workers coming in to help. It has been difficult for me to admit that I can't give Zoe everything she needs. As a mom, that is a hard thing to know about yourself.

Then I tell myself to suck it up. How lucky I am. Zoe does go off and play in her own way. And at least I live somewhere where help is given to us at a low cost. Everyone needs help in raising their kids. That comes in different forms and every way has different obstacles. So, I know we are lucky.

Plus Zoe is a really cute kid so she sucks in people who want to help. The Safehaven staff were very disappointed we were picking her up after one night. Most parents leave their kids for a week or two at a time. Next time I think we may try two nights, but Zoe is a bit young yet for a longer stay. She did make a friend there and had fun rolling around on the mat grabbing his toys and him grabbing hers. So hopefully she will continue to have a fun time there.

In the end that is what matters- Zoe is getting what she needs. And there is no human out there who could possibly meet all of Zoe's needs without completely burning themselves out. Yes, I am a super-mom, but even superheros have their limits.

A couple of Zoe recommended charities

Hey all,

I know there are a gazillion worthy charities out there, but I thought I'd let you know of a couple of "Zoe approved" charities to add to the list-

Easter Seals- Zoe gets money ever year from Easter Seals for both diaper costs ($400 a year) and equipment costs ($3000 a year). They paid for her bath seat and will (once we apply for it) assist with costs for a ramp/stair lift (this summer) and van modifications (next year maybe?) They also provide for Zoe to go to camp once she is six and until she is eighteen. This summer we are all going to family camp, which we are looking forward to. I used to work at an Easter Seals camp in Alberta (Camp Horizon) so it will be both weird and fun to go to one with Zoe. Genevieve has already been to the mom's retreat last summer, which was a great break for her. I was a little bit jealous. Only a little bit though :)

Easter Seals is having their Ontario telethon today, so if you feel so inclined please donate at http://www.easterseals.org/

According to Easter Seals a family who has a child with a physical disability faces $40 000 in medical expenses and loss of income a year. That certainly holds true for us- in Zoe's short four years we have had over $65 000 in uncovered medical costs, not including loss of income. So every little bit we can get from Easter Seals helps- the same is true for countless other families with kids who have disabilities.

March of Dimes- provides $15 000 in a once off contribution for van modifications/ramp for house access, which will be very handy when we get around to looking at those things. These are crazily expensive modifications, so it is great the March of Dimes recognizes this and helps out.

There are several more charities aimed at assisting the families of special needs kids to cope with expenses, but a lot of them are income based and do not take into account the amount spent on medical expenses (which for us is considerable). So if you are looking at donating this year and want to keep Zoe in mind these two are good ones to consider. And at some point, Zoe may just be having her own completely non tax deductible "ramp" fundraiser coming up at some point too, so keep that in mind : )