Zoe in ICU

Zoe Has a Cold

On Tuesday, we noticed that Zoe was coming down with a cold. Just a simple, stupid cold started all this. She had a runny nose and slight fever. She had a pretty good night- just woke up once with a fever and needed to be cleared out from all the mucus. She had a good day Wednesday and we expected her to possibly go to school on Thursday.

Emergency Room Visit

At 4am on Thursday, Gavin and I both woke up because we heard Zoe breathing kind of funny. We figured she was clogged from mucus or had turned herself face down. Gavin went to check on her. I heard him calling her name repeatedly which meant she was having a seizure. Zoe was having a tonic clonic seizure (http://en.wikipedia.org/wiki/Tonic%E2%80%93clonic_seizure )which means her whole body was shaking and she was not conscious. Because we were not sure how long she had been seizing, we gave her the emergency seizure medication and started getting dressed to take her to the hospital. Zoe continued seizing all the way there and was still seizing when I dropped Zoe and Gavin at the emergency entrance. The seizure lasted a total of 30 minutes that we know for sure plus however long she was seizing before we found her.

Zoe was actually doing better after the seizure and we planned to take her home. However, while waiting for medication and discharge papers, Zoe began seizing again. This seizure lasted 45 minutes despite five doses of emergency seizure medications. The doctor said Zoe had started to go into status epilepticus which is serious (http://en.wikipedia.org/wiki/Status_epilepticus ).

After Zoe finally stopped seizing, she was doing ok but they wanted to keep a close eye on her and planned to admit her to the regular floor. While waiting for the transport person, Zoe began signing that her chest hurt and was working really hard to breathe. They took an xray and while waiting for results, started oxygen and Ventolin treatments.

The doctor called us over to show us the xray results (never a good sign) and showed us that at 5am Thursday morning, Zoe's lungs looked like they always look- just a little white shadow in the left lower lobe. By 7pm, her lungs were covered in white shadows which meant there was mucus/fluid in both of her lungs. They were concerned that her lungs changed so quickly and thought it might be that she aspirated mucus during her 45 minute seizure. The medications they gave her made it harder for her to protect her airway so she may have sucked in mucus as a result.

Intensive Care Unit

As it stands, Zoe needed to be put on a breathing machine since she was having such a hard time breathing and her oxygen levels were dropping. She is on a less invasive breathing machine called bi-pap and they are watching her closely to see if they will need to be more invasive and fully intubate her. My understanding is that with bi-pap, Zoe is still initiating breathing on her own and the machine is blowing air to make her lungs expand more as she breathes. With full intubation, the machine will be breathing for Zoe.

Current Issues

Right now Zoe has three big issues they are figuring out:

1- Keeping a close eye to see if her lungs are improving. If not, they will intubate her and start washing her lungs out with saline to clear the mucus out. They are giving her some time to see if she can clear her lungs herself. So far we have seen slight improvement on her xray and they have been able to decrease the pressure and oxygen levels on the breathing machine.

2- Zoe stopped peeing on her own and they aren't sure why. So they are giving her medications to make her pee. They don't want extra fluid sitting in her body since it is not good for her lungs. And obviously, not peeing is not a good thing.

3- Zoe is very difficult to get an IV into. They have already gone through several IVs and are constantly poking her for bloodwork. So they are talking about inserting a central line (http://www.medterms.com/script/main/art.asp?articlekey=14394 ) but they are some risks with that so they are waiting for some culture results to estimate how long she will need IV antibiotics for. If it is going to be several weeks, then they will have to insert a central line.

Zoe is Miserable

Right now, Zoe is pretty miserable. The machine is obviously uncomfortable, she is being poked every few hours and suctioned every couple of minutes. They are deep suctioning her through her mouth and Zoe hates anything in her mouth. Today they are giving her a medication to help her sleep which is a good thing. She needs to rest so her body can stay strong but she feels so miserable she just lies awake irritated.

We are going to get a hotel room a block from the hospital so that I can spend more time with Zoe. Right now it is difficult because Ailsa is not allowed in the ICU. They are worried about her being exposed to something and getting sick too. So we plan to have people at the hotel with Ailsa so I can run over to see Zoe and then run back to nurse Ailsa and get rest when I need to. Ailsa has been doing a great job with all of this but we could see how irritated she was after spending two days with various strangers holding her and not on any sort of routine. So we plan to have her spend time with a regular group of people we trust and have more of a routine during the day so she can sleep well at night. Which means we can get a little more sleep too.

We will try to post updates when we get a chance but just wanted to let people know how Zoe was doing.

We appreciate everyone keeping us in your thoughts.

That was Then, This is Now

Who Does Ailsa Look Like?

We get asked this a lot. Zoe looked so much like Gavin, people never seemed to ask. It looks to us that Ailsa is looking more and more like Zoe as time goes on. When I look at them, I can see that they are sisters. We took some photos of Ailsa today in the same outfit and on the same chair that we took pictures of Zoe when she was around the same size...not the same age as you will see but the same size.

Ailsa at six weeks old.

Zoe at six months old.


Zoe at five months.



Ailsa at six weeks.

Unfortunately we weren't able to get any pictures of Zoe looking forward at the camera. Most of the pictures from this photo session look like this- with Zoe screaming her head off. Poor tortured child- why couldn't she just sit still so her crazy parents could take at least 50 pictures of the same thing? Got to love digital cameras...

Sign for Ailsa

We have been holding off assigning a sign for Ailsa. We are hoping Zoe will come up with one. She has come up with several signs for important people in her life including "girl" for her main teacher Alison and "boy" for her teacher Anthony. After much encouragement, she did a scratchy beard sign for her teacher Moe. Even Uncle Andy (who only visited for one night last November) got a sign- the letters "A N." Some of our friends don't care too much for the signs they were given like "boy smells good" for one friend and "hurt lip" for another. But hey- we can't control Zoe's signs!

So far Zoe signs "mommy baby" and sometimes "mommy baby all done" for Ailsa. Not sure if she is calling her mommy's baby or saying the baby that was inside mommy and is all done being there. The other night we talked about coming up with a different sign for Ailsa and Zoe kept signing her word for Ailsa being hungry (biting first two fingers) and baby. After discussing how Ailsa will not always be a baby, Zoe signed for a few minutes before we realized she was asking us a question. We finally figured out that Zoe was asking/saying when Ailsa is all done being a baby, she will still be Zoe's sister. To which we said, "Yes, of course. Ailsa will always be your sister." So then Zoe started calling Ailsa "hungry sister" instead of "hungry baby."

Hmmm, we might keep working on that sign since I am not sure how Ailsa will feel about being called the hungry sister when she is going through that awkward adolescent phase.

Missing Zoe

Writing on the blog tonight was my way of going through cute pictures of both my girls because I am really missing Zoe tonight. Gavin is working all weekend and I am studying for my Canadian Citizenship test so we decided to have Zoe go to Safehaven/ The Zoe Hotel for the weekend. I know that Zoe has a great time there but I still really miss her when she is not home. I miss seeing and hearing her around the house. I miss kissing and holding her. I miss our conversations that constantly blow my mind with how clever my little girl is. And I missed tucking her into bed tonight. But after waiting four years to take this test, I want to make sure I am prepared. And it is difficult enough finding any study time with taking care of Ailsa all weekend.

When I talk to Zoe on the phone, she just laughs and I can hear her playing with her toys in the background. So I know she is having a good time.

So, goodnight Zoe. I love you and look forward to seeing you soon.

Helpful Big Sister

Sisters

Just as we predicted, Zoe has been an amazing big sister. She does a great job letting us know when Ailsa is crying and Zoe wants us to pick her up (as if we couldn't hear Ailsa screaming her head off- wow can she cry loudly!) Zoe does a great job sharing her toys and loves to touch Ailsa's head and hands. Before Ailsa was born, Zoe was convinced Ailsa would come out walking and has been disappointed that this was not true. So lately I have been holding Ailsa up and fake walking her which Zoe thinks is just hilarious. Zoe has also generously offered for Ailsa to use her walker when I have explained that Ailsa's legs are too weak to walk on her own. Good thinking, Zoe- great idea since your walker helps you but I think Ailsa might just be a little too small yet.

Ailsa Wants to Eat

The other night Ailsa was being fussy when I was trying to nurse her so I decided to put her down, eat my own dinner, and then try again. While I was at the table with Zoe, Zoe kept signing something I couldn't quite make out. Zoe was signing something about me, then biting her fingers, and something about Ailsa. I thought she was saying Ailsa was crying (she was) and I was mad at her. But after a few minutes we figured out Zoe was saying she could tell Ailsa was hungry because she was eating her hand so she needed mommy's milk. We had been talking the other day about what it could mean when Ailsa cries- how can you tell if she is hungry vs tired vs bored. I guess Zoe was really paying attention and has figured out that when she is rooting on her fingers, she wants to nurse. Zoe is so smart and caring, it is sweet to see how she is trying to help us take care of Ailsa.


Father's Day

Gavin had to work on Sunday, so the girls decided to celebrate Father's day with him on Saturday instead. We had a great day at the park that has a splash pad. Zoe is really loving being outside now (which is a huge change from the days where she would be overwhelmed if we even opened the curtains in the house). Zoe did a great job signing "water" when she wanted to run around in the water and a very clear "all done" and "cold" when she was finished.

We then headed home for a delicious phone ordered meal of pizza. When discussing if we would go out to eat, eat at home, or just get a pizza, Zoe immediately smiled and laughed at the idea of pizza. So how could Gavin say no to that even if he didn't necessarily want pizza?

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.