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.

Zoe Sick- Minor

Fevers With a Cause

Zoe has been running a fever since last Thursday. We also noticed that she chewed her one finger so much that it had a nasty looking blister on it. Tuesday was day 6 of fevers so we went to the paediatrician to see what was going on. We actually found a simple cause this time! I think the doctor was just as excited as we were that there was an obvious cause and this is not one more case of rumblings in the chest but not being sure if she has pneumonia again. When the doctor looked at Zoe's throat, she could see blisters just like the one on Zoe's finger. Zoe has a viral infection (not hand, foot, and mouth which we are pretty sure Zoe had last year) that causes blisters in the mouth/throat but since she was chewing her fingers so much it caused a blister to form there too. Apparently this is very painful and most kids are on codeine for it. So far Zoe has been doing well on Motrin and Tylenol. She was in a pretty good mood today so I dropped her off at school this morning. Hopefully she will make it through the day. I am hoping being at school will distract her from the pain and she will eat better. I can tell she is in pain because she is chomping away on her hands and when I ask her why she is biting so much, she signs "hurts."

Zoe's New Skill!!!!!

Zoe Sucking Her Fingers

After two and a half years of attempting to teach Zoe how to suck, Zoe suddenly started sucking her fingers last week! This is a very exciting milestone for 1P36 kids. First, it shows that her mouth muscles are getting stronger. And second, it means that she will start sucking her fingers instead of biting them. Zoe has been pretty good about the biting but does occasionally bite so hard that her fingers bleed and she has a sore. She does seem to be aware of how hard she can bite before hurting herself. She was very happy to discover this new sucking skill- she gave her finger a few big sucks and then smiled and signed, "More, mommy." I kept laughing and saying, "You are doing that, not mommy!" Funny enough, she seems to prefer sucking the same finger I used to suck as a kid.

Other New Skills

Zoe continues to amaze us with her development. She is now able to better control where she is going in her walker. She can aim through doorways and 90% of the time is dead on. If she hits a wall, she is now able to get herself unstuck. Zoe can also move herself on thin carpets. She surprised us by taking off in our room this past weekend.

Gavin just called me at work to report that while he was setting up lunch, Zoe thought it was a good idea to zoom over to the table and pull the bowl of yogurt down onto herself, her walker, and the floor. Apparently she thought this was hilarious! I can't believe Gavin didn't take pictures- we are so proud of the messes she can make now. It seems like not too long ago when Zoe couldn't even bat at things with her hands. Now she is such a menace and gets into everything!

Zoe also began splashing in the bath in the last few weeks. She purposely splashes with her hands and kicks her feet to "swim." She loves floating in the life vest we bought for her. We even let her take it in the bath so she can get used to it.

Upper GI Results

We did not get the formal results of Zoe's upper GI yet, but the doctor who did the test mentioned that Zoe definitely has reflux (no surprise to us), but the test did not show any aspiration. We were very glad to hear this news. It still does not give us an answer as to why she gets these lung infections and why she is still running a fever (I think we are on week six now). But we recognize that there are not always answers. Zoe's pediatrician is going to see how severe the reflux is and then decide if she will start on a medication. The reflux does not seem to bother Zoe, but I guess we have to be sure it is not damaging her esophagus or lungs.

Only Ten More Days Until Our Big Trip!

We are busy packing and getting the house ready for our big trip. I added up how many miles/km we will be driving total and it looks like we will travel at least 2000mi/3200km.

Our itinerary: We head to Indianapolis next Thursday. Then to St Louis to visit family the following Monday. We will be there for a week before heading to Kentucky to explore Mammoth Caves National Park. Then to Pittsburgh for a work conference where I am presenting. In all, we will be gone 18 days. We really look forward to the time we get to spend together as a family. It will be busy but as long as Zoe stays healthy, I think it will be a really fun trip.

First Official Ontario 1P36 Get Together

Sequoya (5 years old) and Zoe (17 months)

We organized the first official Ontario 1P36 get together this past Saturday at Rock Point Provincial Park. We had one family show up from Buffalo, New York (Sequoya is 5 years old with two older sisters and one younger sister). So, as it turns out, we were the only Ontario family who could go. The park was a little out of the way but it was a nice setting. It was wheelchair assessable and had lots of open space for kids to run around (and Sequoya loves to run around). It was great meeting a new family and it made us decide that we would like to organize a couple of get togethers a year in different places so that if people are unable to come to one, they can come to another one. As always, it was good to see where a 5 yo with 1P36 is at. It gives us hope in some ways and hits us with a dose of reality in other ways. It reminds us how much work we are going to need to do with Zoe in the future (as if we aren't working with her now!) We can tell that Sequoya's parents have put a lot of time, energy, and love into raising her. It was great to see how steady she was on her feet and to hear her say "more."
Zoe's first camping trip
After the BBQ abruptly ended with the rain, we went to our campsite to pitch our tent and put Zoe inside for a much needed nap. Zoe did great with the camping but we did notice she napped a bit more. It turned out to be a great afternoon for us because Zoe napped and we sat around talking and reading our books (imagine that!) We did wake Zoe to feed her since we didn't want her waking up at 4am hungry. Zoe was a little confused about eating in the dark and gave the trees a curious look in the morning like "Hey trees, why are you still in my house?" We are planning a five day trip next week with our friend Amanda and we are really looking forward to that. Camping seems to be a great holiday idea for Zoe. She may need to nap because of all the stimulation but then we can just hang out and not feel antsy since we aren't trying to fit in any sightseeing. We do have the hiking backpack so we can go for walks when Zoe is up to it. Zoe does get over stimulated when outside and does some arching and crying, but she seemed to calm down easily in the tent.
Zoe biting her fingers
One thing we hoped never to have to deal with is now happening. It is very common for 1P36 kids to bite their hands, fingers, and wrists. The kids don't seem to notice the pain involved and are looking for that oral stimulation (some of the kids also bite to show their frustration). Zoe came home with a deep bite mark from daycare on Friday and has continued biting at that finger. She now has another deep bite on another finger. It breaks my heart to see those little fingers bleeding. Zoe does seem aware of the pain however, so this gives me hope. When she bit herself and was bleeding at the BBQ, she suddenly started arching, crying, and looked at me. So we just tell her, "That is you doing that Zoe. That is your finger. You have to be gentle with your fingers." We are also encouraging her to bite other things like her chewy bear. The only problem with that is Zoe does not have the coordination to hold something to her mouth to bite it. So we have to sit with her and hold the toy for her to bite it. And as you all know, we can't sit there holding her chew toy all day when we are trying to do therapy, go to doctor's appointments, feed her, etc (not to mention clean the house, shower, cook meals).
Opthomology Appointment
We had some good news at the opthomologist last week. He said that he can definitely see improvement with Zoe's vision since she started wearing the glasses in April. We have noticed that Zoe makes better eye contact and will track a little better but it was very encouraging to hear the doctor say he saw improvement. We will continue with the vision therapy and glasses and return to opthomology in six months to try the VEP (visual evoked potential) again. Zoe did not respond well to the VEP last time because it involves a lot of flashing lights and she kept closing her eyes and arching. She also kept pulling the electrodes off of her head. Hopefully she will be able to cooperate in six months. Either way, we will see the doctor again at that time. It is encouraging to hear that Zoe is progressing.