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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 : )

We Regret to Inform You...

We just got some disappointing news in the mail. We applied for Zoe to attend an Integrated Therapy Program for school this fall. Zoe will be in Kindergarten and this school has Junior, Senior Kindergarten and first grade. It was a very time consuming and frustrating all along and we had an idea that they may not accept Zoe since all along they were saying things like "Zoe has too many needs. Zoe is non-verbal. etc" They even started saying Zoe's vision impairment was too great. We felt like they kept finding excuses for not accepting her. But we still hoped this would work out because they have so many resources at their centre and we know Zoe would really benefit from the program.

So today's letter states, "We regret to inform you that Zoe does not have a place with our program."

And that got me thinking about all of the times we have heard these regretful statements since Zoe was born. And how frustrating that is as parents. I just can't see how anyone can look at Zoe and not see her potential. It's there- I know it is. It just takes a lot of work to bring it out. And I guess they are looking for easier kids that they can check off as making significant gains as the year goes on.

Significant gains...that is another regretful statement we have heard recently:

"We regret to inform you that Zoe is not making significant enough gross motor gains to qualify for physiotherapy at this time." So what- she is too disabled for therapy? What kinds of kids do you want then?

So many regretful statements...

"We regret to inform you that your beautiful baby we just whisked off to the NICU without you even getting a chance to hold her has some sort of serious problem."

"We regret to inform you that your perfect two week old is missing a part of her chromosome and will probably never walk, talk, sit on her own, smile, respond to you, eat on her own, etc."

"We regret to inform you that we must file AMA (against medical advice) in your child's chart because you are refusing to put in a gtube when she is only 2 1/2 weeks old and we haven't even given her a chance to show us she can eat."

"We regret to inform you that this restaurant does not have a supportive highchair so you must carry yours everywhere you go."

"We regret to inform you that this building is not accessible which means lugging your child and all her equipment up and down stairs. Oh and by the way, it also means that she may not have anywhere to walk around. But that is ok, just stick her in her chair where she belongs."

"We regret to inform you that our recreation facility no longer has disability pass rates which means your family can no longer afford to swim and play here. And yes, regretfully we are still the only fully accessible facility near you."

"We regret to inform you that yet again this restaurant, museum, airport, etc does not have adequate change tables which means you get to change your daughter on the floor."

"We regret to inform you that we want your child to start using augmentative communication but we have no intention of working with you or helping you with that process. Good luck on your own."

"We regret to inform you that your insurance does not cover this drug, this piece of equipment, etc."

"We regret to inform you that your child is too able bodied to qualify for respite at our facility."

"We regret to inform you that your child is not able bodied enough to qualify for our program."

On and on the negative statements come at us. And in my mind I constantly compose my response:

"I DO NOT regret to tell you that my daughter is an amazing and wonderful person who has already made gains and reached goals you told us she would never reach. AND she is only FOUR!"