Tuesday, March 31, 2009

March: Sleeping and Waking

As I mentioned before, we had a few sicknesses in our home in March! Avery had a cold/stomach virus for about a week, and spent pretty much the whole time sleeping downstairs in the TV room on a nice bed made of a queen size memory foam pad folded in half - quite comfortable actually! Here she is taking a nap - even in her sleep she looked quite sorry for herself!
Brogan got this cute little raggedy bear from his Uncle Sebastian and Aunt Jenna when he was born, and I've been putting it in bed with him. Its been rather cute because I hear him just talking away happily when he wakes up from his naps, and when I go up to get him, he's holding this bear and chatting to it! Here he heard me just before I took the picture so he dropped the bear (on his face!) and twisted round to see me :)
I keep on being reminded that Heavenly Father is just waiting to bless us the minute we make the tiniest effort! This is an example of that. We hadn't been having family home evening for...I don't know how long, and would be ashamed to admit even if I did know!! So we decided that an easy way to start back up with FHE would be to just "learn" an Article of Faith every week! So I just wrote out the first article of faith on a nice big piece of paper, and we had a very simple family home evening! Avery saw the paper when we sat down for dinner and said "I want to do that!!", which was funny, and so we did it, and I was amazed at how well she recited it, and she just wanted to do it over and over! The amazing thing was that even though that was all we did, that night when it was time for bed she said "I want to read my scriptures!!" and insisted on having her very own scriptures in bed with her. Bed time with her had been just a little bit of a struggle for a few night preceding this - I'd been having to go upstairs one or two times before she would settle down - but that night She insisted on having her scriptures, and asked me to read it to her, and after I'd read just a couple of verses to her, she said goodnight, gave me a hug and a kiss, and went to sleep without any fuss at all!! It was amazing! And it was like that every night for about a week! (Unfortunately, we haven't had another FHE yet since then....but we will!!!!) Every night when I went in to feed Brogan at about 10:30 or 11pm, this is how I found Avery sleeping. Adorable.
Brogan is just the sweetest, happiest little boy!

March: There's nothing like freshly bathed babies!

Avery and Brogan have been sharing baths for a couple of months now, and it's something that they both love! March was one of those months when they passed a couple of colds back and forth between them, and for most of the month at least one of them sick at any given time! A nice bubble bath is a reliable thing to fall back on the make them both happy!
Seriously, is there anything sweeter, fresher or more kissable than a freshly bathed baby?? Oh, I just can't get enough of him, he is so squeezable!!!
My chubby thighed baby boy! Avery's legs never looked like this :)
Avery is fascinated by her wrinkly fingers after a long bath! Here she insisted that I take a picture of them :)
Brogan loves his sister so much!
She loves to make him laugh!
Making tidal waves... :D

Friday, March 20, 2009

Brogan's new skill

Brogan started pushing back onto his knees on Sunday! We were just sitting in the tv room and he was on the floor rolling around, and he just suddenly started doing this all by himself!! He's getting so big and strong!

Thursday, March 19, 2009

Funniest picture!

It had been a few days since I'd taken the photos off my camera, so I sat down to do it this morning, and came across this picture which Gabe must have taken when he gave Avery her bath the other night. It made me laugh out loud so I thought I'd share :)


My favourite part is how the look on her face and her crazy hair are completely mismatched!!
Ha ha ha ha!!

Monday, March 16, 2009

Sick sick sick!!

The good news is that Avery is pretty much better now. Finally! She went back to preschool today, and was very happy, although she was EXHAUSTED when she got home! Brogan and I have it now though, Brogan got it on Wednesday, and I got it on Saturday, although it doesn't seem to be affecting my stomach too much, which is a wonderful thing! A little bit of nausea, but that's it, mostly I just have it in my head and ears and nose...you know, that lovely sinus pressure headache that never goes away and the blocked nose that will not un-block no matter how much you blow....ah, lovely.
Oh well. This too shall pass :) haha
Avery was supposed to have an appointment with her ophthalmologist (I can only spell it with the help of spell check :D) last week, but because she was so sick I had to reschedule it. That's okay though, because I'm sure it would have been another appointment of "Well, it still hasn't plateaued, so lets just keep on patching 2 to 3 hours every day, and I'll see you back in 3 months." Not that that gets old or anything... I really like her ophthalmologist, but Roanoke really needs to get themselves another pediatric eye doctor (I'm not going to type that word any more today!!!) because the waiting time at his office is always ridiculous. I always try to get the earliest appointment time possible, and I still have to wait. Last time Avery's appointment was at 9:30am, which is still quite early in the morning, but they were already running about 45 minutes late! So we sat in the waiting room for 45 minutes, and then it was another 20 minute wait in the exam room. Sort of ridiculous. But the only time we've taken her for a second opinion for her eyes, we had to drive all the way to Charlottesville which is two hours from here.

Thursday, March 12, 2009

Silver lining!

Brogan appears to be coming down with the same stomach virus that Avery has. Boo! But, strange as it may seem, I'm actually feeling relieved in some ways, because it means that Avery's sickness is definitely a virus and not some shunt problem, which I'm always worried about in some part of my brain whenever she gets sick! So while I'm not looking forward to the next few days of two sick little ones, at least I know what it is and don't have to worry. I am looking forward to being able to sleep in my own bed again, instead of on the sofa next to Avery, and I also am looking forward to sleeping for more than an hour at a time... *sigh* I've had a headache all afternoon, which I think is from sleep deprivation. The other good thing though is that Brogan didn't start feeling bad until yesterday afternoon, which means that the whole time Gabe was working his 16hr shifts this week, I was only having to look after one sick child, and now that both of them are sick, both Gabe and I are home to look after them. Small blessings make the biggest difference.

Tuesday, March 10, 2009

Stomach flu...

Avery has been sick with a stomach flu or something since Sunday. Again. She just had one a couple of weeks ago, and now she has it again. And this time it seems to be worse and lasting longer. I haven't taken her to the doctor, but if she's still as bad tomorrow then I think I will, even though they'll probably just tell me it's a stomach virus and we just have to wait it out. Poor baby is really unhappy with it. During the day she keeps on getting little pockets of energy when she doesn't feel too bad, so she'll try to play a little bit, and then she'll suddenly say "I feel sick, I need to lie down" or "I have a headache, and need to have a nap for a little while" Poor sweet girl.
It started on Sunday night when she woke up several times quite unhappy and feeling bad. So I ended up bringing her downstairs to sleep on her little makeshift bed in the tv room, and I set myself up on the couch and turned on a quiet movie for her to relax to. Then she suddenly told me "I need to puke", so I grabbed a plastic tub and she threw up. Probably more than you needed to know, but it's just that that's the first time I think that she's told me she's needed to throw up before she's already vomited all over her pillow, so it was great! Not great that she had to, but great that she told me in time! Anyway, she threw up a couple of times that night. She had a bit of a fever (about 99.8 F)all day on Monday, and spent most of the day like this:
Notice how sad and sorry for herself she looks! She was watching a movie and holding onto her chuck-e-cheese birthday balloons (I had no idea those things lasted so long! Her birthday was almost a month ago!!!), they seemed to comfort her a little :)
And cookie monster of course... talking to him and telling him how sick she was seemed to help too :)
This was today. She was watcing Enchanted and needed her "Panato heads" to watch with her. (They are all her own creations by the way - quite "normal" looking today, no extra arms or eyes on top of heads!) This was one of the times that she'd had a little energy so she was playing with her potato heads and having fun with that, then all of a sudden felt sick again and said she needed to lie down for a little while. And a couple of times while she was lying there she said "I'm busy!!" which means "dizzy" in Avery-speak. All she's had to eat or drink today and yesterday is pediasure. Every now and then she asks for something else, so I bring it to her, but then she won't eat it. She has had apple juice a couple of times, but has vomited afterwards both times, so now I'm not letting her have that anymore, so it's just pediasure.
She's sleeping downstairs again tonight. I put her in the recliner before bed and gave her some pediasure and told her I was taking Brogan upstairs to get him ready for bed and then I'd come back to get her, and by the time I came back she had fallen asleep! Poor girl's exhausted! So I carried her upstairs and put her in bed where she sadly whined "No, I need to say prayers!!" so I said "Okay, do you want to just say it in bed?" and she said "Okay" and she kept the same whiny tone of voice the whole time she prayed. I couldn't help but smile as she whined,
Dear Heavenly Father, We thank thee for this day, we thank thee for this many blessings, please bless our friends, please bless our school, in the name of Jesus Christ, Amen.
I love that she just had to say her prayers even though she was practically asleep and she felt horrible! I love that girl!
She woke up about an hour later just inconsolable though, so I ended up bringing her downstairs. So I'm being very quiet, and I'll be sleeping on the couch again tonight. Hopefully tomorrow she will be feeling better.

Monday, March 09, 2009

Sick Day

Last night was not a good night for Avery and I. I'd been having some sort of lower abdomen pains since Friday night, so was hoping for a good night's rest, but then Avery got sick with some stomach thing, and the two of us ended sleeping downstairs in the TV room. She was very sad, and she threw up a couple of times. She didn't throw up anymore today, but was feeling sick all day and had a temperature, so she spent most of the day lying on her little makeshift bed in the tv room watching some of her favourite movies. So I'm still having abdominal pains, Brogan's still getting over a cold, and Avery has some sort of stomach bug. We were a pretty sorry bunch in our house today!
I wish I looked this pretty when I was sick :D
I trimmed Brogan's hair today - I decided his little long patches on the sides of his head were funny looking, so I just buzzed them! This is before....
...and this is after. I think it looks better :) He was very curious about the buzzing thing I was putting next to his head and kept on trying to look at it :)
Even on sick days my babies are adorable!

Stretches, socks and treadmills!

For Avery, part of living with CP is the need for frequent, intense stretching. This has never been something she enjoys. Unsurprisingly. But here is more proof of the fact that she has an amazing, thoughtful Daddy, because recently he has been able to get her to do a lot of her stretches willingly and almost unassisted! This might not sound like a big deal, but it is! All its taken is giving the stretches fun names, but it's made the world of difference. Here are some of Avery's stretches:
The Dinosaur Stretch!
The idea is to stick one leg up straight behind her as high as she can. It's difficult for her to do, and she can't hold it for more than a split second on her own, but she likes pretending to be a dinosaur - I suppose the leg sticking out is her "tail" :)
The Butterfly Stretch!
She can do this reasonably well all on her own, but to get s decent stretch she needs help getting her feet together properly and pulled up close enough to her bottom, but once there she will push her knees down all by herself and then "flap" her legs like a butterfly :)

There's another stretch called the whale or alligator stretch, which I apparently haven't taken a photo of yet because I couldn't find one when I was looking for one for this post! So I'll try to get a picture of that one too. She does that one by sitting with her legs out in front of her, and she has to open up her legs as wide as she can, which isn't very wide, so we help her do it, and then she helps keep them like that for a few seconds by holding her knees, and then a toy comes along and she "eats" it by snapping her legs back together.
I'm telling you, I consider it almost miraculous to see her not only putting up with stretches with very little complaint, but also actually enjoying them!!! It's amazing! Of course, I think that stretches done this way may well be not quite so vigorous or maybe effective, but the fact that she's willing to do them is worth the slight loss of intensity. Plus, I think the fact that she's relaxed while doing them goes a long way - when we do them the regular way, her dystonia kicks in straight away which makes it really difficult to even pull her legs into a stretched position.
Here is Avery a couple of weeks ago on the treadmill at physical therapy with the wonderful Lisa. She's been doing this for a while, walking with the treadmill on its lowest setting. She actually quite likes it! But Lisa was even able to let go for a couple of seconds last week! Of course, the second Avery noticed she wasn't touching her, she about fell over and Lisa had to hold on again, but it was still great!
I had my mother send me some long white school socks for Avery to wear with her braces and theratogs. I was thinking about it because the long socks she had before just weren't good enough, because they started falling down, and even if they didn't they weren't great with her theratogs because they didn't protect her skin from the silicone on the elastic, so she was forever getting sore red marks all over her legs where the webbed silicone touched her. These school socks are PERFECT! They are long enough that they don't leave any exposed skin between the top of her braces and the bottom of her theratogs, they don't slip or fall down, they're thin and airy so they won't make her too hot when the weather gets warmer, AND they make me feel nostalgic :D Bonus!!!

Friday, March 06, 2009

Flashback Friday: First post-shunt MRI

Okay, so when I pulled out the old MRI films to scan one for my post this afternoon, I decided I may as well scan some more of them! So here they are - more evidence of the fact that my baby is an absolute miracle!! :)
Maybe this is weird, but I actually think this one with all the bones in her little neck, and her little shoulder peeking out is adorable!! I know, I know, how can an MRI image be adorable...but I'm her mother okay?! I'm allowed to think that!
You can tell this is taken from the front because the distortion is from her shunt, which is behind her right ear :)
Cutest little baby alien I ever did see!


Neurosurgeon appointment

Yesterday Avery had an appointment with her neurosurgeon, which, I have to admit, I've been quite looking forward to! Last time we saw him was almost a year ago after we had a little scare at the hospital which, blessedly, turned out to be nothing! So it was fun to be able to "show her off" to him and some of the ladies at the office who remembered her from last time, because of course she's grown a lot since the last time they all saw her. I'm so proud of her!

While we were waiting for the doctor to come in, Avery found on of those reflex hammer things (no idea what they're called) on the table next to her, so she decided she needed to "measure" her legs! So she tapped each knee twice, just like the doctor does it, and said "Okay, good!", so she was obviously pleased with what she discovered :) She also then did her feet and her hands, as well as each of the fingers on her left hand :) Ha! (camera phone, sorry!)
So obviously, this was just a check up, so there really isn't much new to report, but I did get a couple of things I've been wanting to get because I lost it, namely, her head circumference chart and a picture from her last MRI. I still have the films from the MRI she had when she was 2 months old, but they changed the system for the one she had last year so that it was all done on the computer, so I only had one single printed picture from that one, and it got lost. :( But here they are!
This first one was done on 04/19/2006, when Avery was 2 months and 5 days old - 2 months and 3 days since her shunt surgery. The light gray area is the CSF in her ventricles, and the darker stuff around it is her brain tissue. I tell you, every time I look at these pictures I am amazed all over again at the miracle that is my daughter. The black dent on the side is distortion caused by her magnetic shunt valve.
Here is what her brain looked like 2 years later! This was done on 02/28/2008 when Avery (and her shunt!) was just over 2 years old. Pretty amazing, right?? In this one her ventricles are black and her brain tissue gray, and you can see the amazing difference in how much the ventricles have shrunk and how much the brain has expanded!
As for her head circumference, you can see from the chart (you might need to click on it to see it properly) that her head size is well within normal range now, which is wonderful! She's gone from more than 5cm above the 97th percentile at birth (43.5cm) to below 90th percentile today at 36 months (50cm) Hooray for Avery!


All in all, it was a good appointment, and Dr Simonds was pleased with how much she's grown and how well she's doing. They had a very fun little conversation :) He did recommend we see a pediatric developmental doctor too, so they made that appointment for us before we left. The earliest available date is...AUGUST 21st!!! More than 5 months away! She's the only one in the area.

Tuesday, March 03, 2009

Options

This morning at PT I was talking to Avery's therapist about different doctors and treatment options and all of that, because sometimes (okay, a lot of times) I worry that I'm missing something, or that there are more things I could and should be doing for Avery. I've been thinking about it a lot. A lot of my blog buddies seem to have taken the stem cell infusion route, and to be honest, since Avery's diagnosis didn't occur until two weeks before she was born, this was something I hadn't heard anything about when she was born, so we never kept her cord blood, so that wasn't an option for her at the time. I felt bad about this, because although I know the research is limited with the whole stem cell thing, I do wish we would have known about it at the time, because even if it hadn't done anything to help her, it certainly wouldn't have done any harm! I've stopped feeling bad about this though, because as I said, it couldn't be helped - in all the research I did during the short time between Avery's diagnosis and birth, the whole stem cell thing never came up, so I didn't know about it, and I've come to accept that if I was meant to do it, I would have been inspired in my research to find information about it. For us, it apparently wasn't meant to be.
Anyway. The reason I've been thinking about this recently is that Avery isn't currently seeing a neurologist. We're seeing her neurosurgeon on Thursday of this week, which I'm sort of excited about because we haven't seen him for almost a year, which is the longest we've ever gone! But Avery used to see a developmental neurologist until he moved to Idaho, and then we started seeing Dr Brown instead who is a wonderful physical medicine doctor. We love him, but I worry that we should be seeing someone else as well as him...I don't know. I was asking Lisa (PT) about what she thought, since she deals with other kids like Avery and knows what sorts of doctors they all see, etc. We were talking a little about the orthopedic doctor we took Avery to almost 2 years ago - he was actually the doctor who officially diagnosed Avery with cerebral palsy. We got her original prescription for her walker from him, but he wouldn't write a prescription for AFOs for her because he didn't believe that braces actually helped. I'm not sure what he would have had us do instead. Lisa was saying that there is now another pediatric orthopedist in town, but that she's pretty sure that he would never prescribe AFOs either. She was saying that she's also quite certain that if we took Avery to an orthopedic surgeon right now, they would recommend some kind of surgery, such as tendon lengthening. She says that as a physical therapist she has mixed feeling about tendon lengthening. *sigh* why can't everything be black and white?? I want to do what is best for my little girl, but how am I supposed to know that what I'm doing is what's best, and not just what one person thinks might be best?
Anyway. Sorry - a rambling sort of post, I'm just in a little bit of a quiet panic because I worry that I'm not doing everything Avery needs me to do.
I do remember that back before Avery got botox in her adductors back in November 2007, Dr Brown seemed to think that she would learn to walk independently during the several months of the botox's effectiveness, and that once that happened she would be using those muscles so well that she wouldn't need to get botox again. Obviously that didn't happen, and her poor little muscles just keep on getting tighter and her tone keeps on getting worse, even though she's working harder and harder, so of course I worry about her. She's having to fight against her body more and more as time goes by, but shouldn't it surely be getting easier?! One of the evidences of this is the fact that her constipation has been getting progressively worse and harder to manage. It's directly related to the muscle tone and tightness of her legs and the other muscles that are affected by her CP, because of course this kind of constipation (neurogenic constipation - I only recently learnt the name for it!) is a reslut of the intestinal muscles behaving in the same way as other muscles affected by CP. We used to be able to control it with an abundance of prunes/flaxseed/apple juice/water in her diet, but it's been getting worse and worse and we have to give her miralax now. I hate having to medicate her in any way, but we just can't control the problem without it anymore. Dr Brown prescribed colace, but have you ever tasted that stuff?? It's foul, and Avery screamed every time I tried to give it to her, and half of it dribbled out of her mouth in her distress, and even after all that she still wasn't going any more often, and even when she did there was still blood every time I wiped. I feel so bad for her. *sigh* What to do?

Monday, March 02, 2009

Josephine says that it is time that I add some to our family blog. I was just waiting for a real life event such as a snowboard trip to Utah to have a reason to contribute...HAHA. She actually suggested I post a little info about my vacation which probably doesn't deserve to be on the family blog because there wasn't anything family about it. It was however an amazing trip which only consisted of playing from 8am till 1am every day for a week. I went snowboarding for three of those days and partied with friends and family for the other four days. The only unpleasant mishaps were I crashed rather severely on Saturday while attempting a tabletop (look it up) in the board-park and realizing at 1:30am the morning I was to fly out that my plane was departing at 7:30 not 10:30. Other than that hot-tubbing, eating-out (with my friends picking up the tab because it was my "birthday"), boarding, snowcat skiing, rock banding, shopping, movie-going and reliving the past was all a 'Neverland Boy' could have ever asked for. So thanks Jo for letting me go and be a child.