That's My Milk!

So many times people ask me how Zoe and Ailsa like having a baby sister.  I laugh to myself thinking, they should be asking- "How does Willow like having sisters?"  Willow crawls around here like she owns the place!  It doesn't occur to her that her sisters were here first.  She is at the stage where everything is "mine" and sharing is something her sisters need to do for her, not vice versa.  

Willow has such animalistic behaviours that it cracks us all up.  Whenever I am cuddling Zoe, Willow races over and will nip at my leg to get my attention while frantically signing "milk, milk, milk" as if she is saying, "Hey- thats my milk- back off sister!"  If Zoe is close enough for her to reach- she will slap Zoe's head or poke her in the eye.  Now, just to be clear, a good old poke in the eye could also be a sign of affection from our dear Willow.  In fact, her annoyed actions tend to look at lot like her sad actions, or happy actions, or bored actions, or...you get the point.  Zoe finds this behaviour HILARIOUS!  She just sits there and takes whatever Willow is dishing out.  Zoe says she remembers Ailsa acting this way but in my mind, Ailsa and Zoe have been such buddies that I don't really remember this phase.  

 Ailsa sometimes positions herself between her sisters to help remind both girls to be gentle with each other.  You can see Ailsa holding Zoe's arm down without effort.  Ailsa knows that Zoe can not always control her limbs as much as we would like her to.  We love that Ailsa has learned how to keep her body safe/ comfortable around Zoe rather than avoiding her.  

I love this picture.

Zoe Critically Ill

Zoe was critically ill a couple of weeks ago.  It has been a long time she she was as sick as that.  It seems like Gavin and I forget how medically fragile Zoe is and how easily her system goes out of whack.  To sum it up here is what happened:

-Zoe threw up a couple of times on a Wednesday. We gave Zoe clear fluids through her g-tube and some nausea medication and Zoe was fine.  We touched base with her complex care nurse practitioner and made a plan to bring Zoe to her doctor in the morning.

-Zoe had an ok night but was very lethargic in the morning.  On the way to the doctors office, Zoe started vomiting and seizing- not a great combo.  Gavin had to hop in the back of the van to administer emergency seizure medication and try to prevent Zoe from aspirating vomit in to her lungs.  I drove to the hospital instead of the doctors office.

-When we got to the hospital they called an emergency response on Zoe.  So- lots of people, lots of talking, lots of excitement, lots of medical interventions, etc.

-Zoe had to be "loaded" meaning she needed some serious medications to stop her seizures.  She also had very low blood pressure which required her to get a lot of IV fluid.  At the time the doctor acknowledged that Zoe getting IV fluid might upset her system but at the time he did not have any other choice.

-That fluid ended up going to Zoe's lungs and heart.

-Zoe is ok now.

-Zoe is home now.

-Zoe is back to school.

This admission was seriously a whirlwind and we are still exhausted physically and mentally from it all.  No one knows why Zoe got so sick from "just" a bladder infection.  She has had many bladder infections and not gotten sick like this but she has also gotten this sick from a bladder infection in the past, just not for a long time.  There is nothing we can do differently to prevent this from happening. 

All of the doctors were amazing and made good decisions so at least we do not feel anger at bad care or anything like that.  We can feel anger at the world, life, etc but the hospital staff were great.

We probably do feel some anger...maybe?  I'm not sure.  Mostly, we just feel tired.  And scared.  And grateful.  And proud that Zoe is such a fighter.  

Zoe reached out for my hand in the emergency room when she was between seizures.  She gazed in to my eyes with a scared expression on her face.  It seemed like she was saying, "Fix it."  I squeezed her hand, kissed her head and told her she was going to be ok.  We were right there with her.  We weren't going anywhere.  I plopped Willow on the bed next to Zoe and she gave her an affectionate poke in the eye for good measure.  Zoe did not respond but I know she felt us there, fighting for her when her body was too tired to fight.  

We were in this exact same position almost 7 years ago.  Ailsa was the baby then.  She, like Willow, sat in the stroller and watched as doctors saved her sister's life.  What a weird, and I would like to think wonderful, family Willow has joined.  So far she seems to fit right in.  

Gavin's birthday in March.

One last picture to show Willow smiling because she looks so serious in the other photos.  She actually smiles all the time, just not when we want her to!

So Big and Yet So Little

Zoe has grown so much and is mature in new ways and yet, when she is tired or sick she still seems so little to me.  She is still my baby girl.

 Zoe has had a rough couple of months.  She recovers from one illness and then is hit with the next.  Thankfully, none of her hospital stays have been long (only a week at a time) but every month since February, Zoe has had a hospital stay.  

Happy Birthday Ailsa!  Ailsa turned six during Zoe hospitalisation last week.  Since Zoe could not be home with us, we brought the party in to her.  Even the clown stopped by to sing just for Ailsa.  She was so excited that the clown came to see her, not Zoe this time.  Even though Zoe ended up having seizures during her party and was not well, Ailsa still managed to have a good birthday and feel special.  At the end of the day, Ailsa said, "This was a wonderful day."  So I guess Gavin and I are doing something right!

This last hospital stay was a bit scary.  Zoe had to be "loaded" with seizure medication two nights in a row in order to stop seizing.  Zoe was having clusters of seizures- she would seize for a minute and then start to come out of it for a minute or two and then slip right back in to another seizure.  This went on for an hour.  The doctors tried a less sedating seizure medication initially but it did not work and they had to use IV medication instead.  Zoe has not had seizures like this in years.  In fact, we can not even remember if it has been 3 or 4 years it has been so long.  We are hoping this is not becoming a pattern for Zoe again.  When Zoe had cluster seizures like this in the past they turned in to "status" seizures which means she seizures constantly for over 30 minutes.  Her longest seizure was 75 minutes but it felt like it went on for hours and hours.  So we really hope to not see any increase in Zoe seizures.

Also a bit worrisome is that Zoe continues to develop full body hives when her immune system is challenged.  This happened two days before Zoe started having fever from this latest cold and infection.  It seems Zoe's immune system is hypersensitive and there is nothing we can do about it other than give her antihistamines to make the itching more bearable.  Zoe is such a sweet child.  She is determined to be happy and make the best of any situation she is in.  It is heartbreaking to see her so uncomfortable.  But we do have a plan now that deals with the hives early in the outbreak and that seemed to help this last time.  

Zoe in Hospital

Another Emergency Room Visit

So far 2012 is not turning out to be as hospital-free as we hoped it would be. Ailsa had a cold all last week. We tried to keep her away from Zoe but that is difficult and as anyone with children know, it is kind of inevitable that once one child is sick, the other is sure to follow. Zoe started with fever and cough on Thursday. By Saturday she was not drinking very much and I was concerned with her colour- her nailbeds were turning blue and it was hard to tell if it was from dehydration or low oxygen. Zoe's reflux was really bad and she was choking every time she coughed. But we wanted to give Zoe some more time so we did not take her in then. It is a difficult balance with Zoe. We don't want to rush to the hospital every time she is sick but we also want to do everything we can to help her feel better faster.

Sunday morning Zoe seemed a little better but by Sunday night it was obvious that Zoe needed to go to the hospital. As we were getting ready to leave the house, Zoe had a huge vomit and wet poop which made us say, "Yes, we definitely need to go in now because she is already dehydrated."

Seizure in the Car

It was difficult to tell if Zoe was in and out of a seizure or just out of it while we were getting ready to go. Gavin loaded Zoe into the car and right away she started having a full on seizure. Gavin rode in the backseat with her and gave her the emergency medication to stop the seizure. The seizure lasted 15 minutes but did stop before we got to the hospital. At the hospital, Zoe continued to have small seizures so they decided to give her a "loading dose" of a strong seizure medication. We were nervous last night when they gave her this because the last time they loaded Zoe with this medication she ended up with aspiration pneumonia on a breathing machine in the ICU. But everyone was aware of what happened before and they watched Zoe closely. They also limited what medications and liquids went into her mouth and gave her a medication to stop her reflux/vomit.

So Far, So Good

It has been 12 hours since Zoe got the loading dose and she has not seized. Her lungs also look good on xray. I called the nurse this morning and she said that Zoe had a rough night but is sleeping soundly now. Gavin is sleeping, Zoe is sleeping, Ailsa is sleeping...I should be sleeping. But I find it very difficult to sleep when Zoe is away from me.

A Conversation Between Sisters

On Saturday I witnessed a sweet conversation between my beautiful girls. We were all in our bed and Zoe was upset and signing, "Ailsa." I said, "Ailsa is right here Zoe, do you want to tell her something?"

Zoe: "hurt"

Me: "Ailsa, Zoe wants you to know that she is hurting right now."

Ailsa: points at her teeth

Me: "Zoe I think Ailsa is asking if your teeth hurt. She is getting two new teeth so she probably thinks your teeth hurt too."

Zoe: shakes her head "no" and again signs "hurts"

Me: "No Ailsa, it is not her teeth that hurt. I think Zoe is hurting all over from her fever."

Zoe: reaches out to grab Ailsa's hand

Ailsa: reaches out and gently pats Zoe's hand with one hand and her forehead with her other hand

Me: "Does that make you feel better Zoe? Do you want your sister to hold your hand?"

Zoe: continues to hold Ailsa's hand while signing "Ailsa"

Zoe doing better

Hey all. Zoe is doing much better today. She was weaned off BiPAP last night and went on to CPAP (http://en.wikipedia.org/wiki/Positive_airway_pressure ) and is now just on blow by oxygen (moisturized oxygen blown close to her face). She got a PICC line (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter )
yesterday at 1:00- they started talking about it at noon so things went amazingly quickly, which was both stressful and comforting. So now she can get her bloodwork through that and we don't have to worry about IV's going bad. She is sleeping comfortably and has not got any sedation for some time now. She still has a nasal trumpet (http://en.wikipedia.org/wiki/Nasopharyngeal_airway )in to help keep her nose open and to facilitate suctioning out any gunk she can't clear from her airway. She looks much better and much more peaceful. We'll try and get a photo up soon. So far there has been no evidence of increased seizures (knock on wood). Genevieve, Ailsa and I are staying at the Delta Chelsea down the street so we all had a much better sleep last night (I got more sleep last night then I had had in the previous three nights combined, which was nice). Our friends Melissa, Riann and Dane have been very helpful, as has Zoe's excellent respite worker Alison. My dad Alan was also a big help on the first day Zoe was admitted as a baby watcher. My colleagues in the ED have been very supportive in me flexing my work hours, providing medical information and just being generally supportive. Thanks to all.

Anyway, just a quick update. I couldn't figure out how to get the links highlighted for you, so if you are interested you can just cut and paste for the time being- maybe Genevieve can fix it for me later : )

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.