Wednesday, July 27, 2011

Swimming Lesson #5

Would you like to see how much progress Avery has made?
She is loving her swimming lessons, and has already come so far!! 
Yesterday was lesson number five, and this is what she can do now:


A M A Z I N G !

Monday, July 25, 2011

More Trike


Avery's skills on the tricycle just keep getting better and better! She has graduated from the little blue tricycle with the seat belt to the big red tricycle with the bell!!

She still reminds me to get her helmet for her, but she is starting to think that she's too big for the knee pads, and especially the elbow pads, because "I'm not going to fall over." 

She can even ride barefoot now :)

She is loving the freedom and independence of being able to ride around the driveway! (We still haven't taken to the trails with her...it's been too darned hot!!)


I went and stood in the middle of the driveway with the camera...

She rode in circles around me, smiling...

and laughing....

and giggling....

and squealing...

and declaring, "You can't catch me, Mom!!"

I actually got a little dizzy, spinning around, trying to keep up with her!

Happiness :)

:)

Oops!!
Hooray for the opportunity to acquire some normal childhood bumps and bruises :)

Silly Boy...

Our three little ones are sharing a room these days, which has been working fine, and means that we've been able to turn the third bedroom into a playroom, which I really like! However, some nights, Brogan can be very disruptive at bedtime... This particular night, he just kept on making silly noises as I was trying to get Oliver to bed, so I sent him to time out in the bathroom while I finished with Oliver. When I went in to talk to him, I finished up with asking him if he was ready to be quiet and go to bed, to which he responded "No." So I said, "Do I need to make you sleep in the bathroom tonight? Because you can't sleep in your bed if you're going to be loud." He thought that sounded like a good idea, even after I refused to bring him a pillow and blanket. So I thought Fine, I'll let him lie here for a little while and then he'll want to sleep quietly in his comfortable bed. So I left. Everything was quiet, and when I went back upstairs about 30 minutes later, this is what I found...

Sound asleep!!

PS, Don't worry, I carried him through to his bed right after I took this picture :) 

Saturday, July 23, 2011

Happy Baby

I think Oliver has been a little neglected on my blog, so here is a little post to show you what a sweet-natured, happy little boy he is :)
And he's getting so big!! He's cruising all over the place now, and climbing up the stairs, and playing in the toilet if I ever forget to close the lid.....!! 
He LOVES the water!! For a while, Avery and Brogan would refuse to share a bath with him, because he would just sit there and splash and splash and SPLASH!!



Getting into mischief...


He is sweetness!

Thursday, July 21, 2011

Hydro Day :)

We are lucky enough to live only about half an hour away from the Higgins family :) Avery and I got to meet Owen and his Mom a couple of years ago, and we finally got around to getting together again this week! This time with the whole families :) We had a pool play date at the Higgins home on Monday :)
Two hydro babies in the awesome pool with the beautiful view!


Oliver exploring in between pool time.

He was ready to get back into the pool!

Isn't that a great pool??!

Avery and Sammy cloud watching :)
Brogan had a blast following Sammy around like a little puppy :) He really doesn't seem to realise that he's not a big kid!! 

We ended up staying for dinner too, cooking hotdogs and burgers over the fire, followed by marshmallows, of course :)
Here is Sammy being the statue of liberty :) It made me giggle :)

Although Owen's and Avery's experiences have varied greatly since their initial diagnoses of hydrocephalus before birth, there is something about spending time with another hydro family which really makes me happy. I have a lot of really wonderful friends, but there is something comforting about being with someone who can do more than imagine what it's like to live through that moment when you learn that your unborn baby has hydrocephalus, because they have lived that moment themselves. 
Thanks for being such wonderful hosts, Higgins family!! We all had such a fun day!

Monday, July 18, 2011

Art

Here is a small sampling of Avery's most recent artwork:
video
It's a picture of me taking a shower in our bathroom, complete with faucets, toilet, and door! You should also know that the only word I helped her spell was "Something" :)
One of Avery's favourite things to draw - a rainbow! She also wrote this caption without help, although when I read it aloud she was upset to hear that it said "This is FOR Avery", so she had to change it to "This is FROM Avery" :)

 Here I am at my very own birthday party! It's a cloudy day, Avery is hiding in a green sleeping bag on the floor, there are chairs for playing musical chairs, and there are purple balloons tied to one of the chairs :)
  
Brogan getting ready to get in his rocket and blast into space!

Practicing her own special version of cursive :) 
Percy, Emily, Thomas, and Diesel!

 10, 9, 8, 7, 6, 5, 4, 3, 2, 1, BLAST OFF!

I am quite beautiful!


And here is an example of Brogan's work:
A Dinosaur!!

Wednesday, July 13, 2011

Swimming Lessons!

Remember a couple of weeks ago when I wrote a post about how Avery is able to keep up with her peers on a tricycle? (She is doing even better with that by the way!!) Well, the other area in which Avery is really, truly able to hold her own is in the swimming pool. For a long time now she has been pretty much independent in the pool. With only the help of two noodles to keep her afloat, she has been able to go wherever she wants to go without anybody's help!
Well, maybe a month ago, Avery suddenly decided that she was ready to start wearing goggles and putting her face underwater! And she also started doing this:
This was at our hotel when we went up to Sterling, VA, for ABM therapy on July 4th/5th. 
We had the whole pool to ourselves :) And therapy was great!
We have been sort of talking about signing her up for swimming lessons for quite a while, but after this big explosion of independence and exploration, we decided that we should really go ahead and do it! So I had a long conversation with the pool manager at our YMCA about whether we should sign up for private/semi private lessons, or whether she could be involved in a regular group lesson, and he said that he would want to let her try the group lessons so she could be fully involved, etc. (He was really great!) So we signed her up, and yesterday was her first class! She was so excited!!
Waiting for her lesson to start! All day she had been asking if it was time for her swimming lesson yet, and  FINALLY it arrived!!
Sitting by the water with her fellow beginning swimmers, listening to their instructor  (the pool manager, who was so great about wanting to make it perfect for Avery!)
Holding onto the rail in the deep end of the pool, waiting for her turn to do her first swim (Which I missed, can you believe it??!)

She did an amazing job!! And I was so impressed with the YMCA staff :) Avery spent the first several minutes taking turns with the other 3 little girls in the class, but then the rest of the time she basically got one-on-one attention with the other instructor, Susie. It was really great :) And Avery had a BLAST! She is so excited to go back!! She will be taking classes every Tuesday and Thursday for the next 4 weeks, and I am pretty certain that she will love every second! And you know that all that low impact exercise has got to be good for her poor tight muscles.
Hooray for Avery!

Tuesday, July 12, 2011

SDR vs SPML

Avery in her new exercise room :)
Mystified by today's title? Welcome to our world. We have been wrestling with some decisions for a few months now, but I haven't wanted to write about it before now. I still don't want to, but we're getting close to actually acting now, so I think I should record some of the process.
One of the things that changed when we started ABM therapy was that we stopped making Avery wear AFOs. The reasoning behind this is that it limits the variation of movement and therefore the forming of new patterns and connections between brain and feet. Anat's article explains this better than I could. Along with everything else I know about the theory behind ABM therapy, this makes complete sense to me. And it is also one of the reasons I wish we had found out about ABM therapy earlier in Avery's life. So she hasn't been wearing braces, which means that she has been able to "experience" her feet more as part of her body, but, of course, since she does like to be up on her feet, it has resulted in this:



Obviously, this is not good. Obviously, something needs to be done. Shortly after we started Anat Baniel Method therapy last summer, Carla suggested recommended that we look into Selective Percutaneous Myofascial Lengthening (SPML). She has not been the only one to say that one of biggest things holding Avery back is the tightness and spasticity in her ankles. She also suggested we see a specific podiatrist in NY, since he spends a lot of time watching the child's movement and function before he designs the AFOs/braces he thinks would help. The braces Avery was wearing before weren't really much better than "one-size-fits-all", all they did was take a cast of her foot and send it off to be manufactured. They were hinged, but very limited, and the last set we had caused chronic blistering. So Carla recommended that we look into going to see Dr Nuzzo about SPML, and Dr Jordan for AFO possibilities. The other surgery we have been researching is Selective Dorsal Rhizotomy (SDR), specifically the one performed by Dr Parks in St Louis. Until recently, Gabe and I have had opposing opinions - he was leaning towards the SDR, and I've been more for the SPML. 
On the internet, there is a lot more readily available information and testimonials/videos/etc about the SDR than there is about the SPML. It is frustrating, because it could very well be just better marketing. The St Louis people have done a really, really good job of putting information out there. There's a facebook group for people interested in SDR, with a lot of amazing pre- and post-op videos. Like this one. (I do not know what the privacy settings are on this video, hopefully it will let you watch it. The girl is 9 or 10, and tall and skinny like Avery, so it's easy to imagine this is what Avery could be like a couple of years from now) It is interesting too, because every single day there are families from the UK posting in the group, talking about how much money they've raised to bring their child to St Louis for the surgery. And every single parent we've found has basically said that it was the best thing they ever could have done for their child. We do not know for sure that Avery would even be a candidate for SDR, some of the contraindications are congenital hydrocephalus (according to wikipedia, but when I spoke to the lady at St Louis, I know I mentioned Avery's hydrocephalus, and she still sent me all the paperwork), damage in specific parts of the brain, dystonia, etc. So we are doing all the paperwork to at least find out if it's even an option. The following video was something we had to do for the SDR team to review: 


It was actually really fascinating for us to watch! We live with Avery every day, so of course we're quite aware of her capabilities and limitations, but actually sitting down and videoing it all like this was quite an eye opener! I was even surprised about a couple of things: how well she was able to bring each leg up into a half kneel, and how poorly she was able to move her toes and feet. We've decided that we're going to start doing one of these videos at least every six months (more often if we do either of the surgeries) as an excellent record of her progress. Plus, she is so cute in it :)
Now about the SPML. There are a lot of Drs out there who do percutaneous muscle or tendon lengthening. It is frustrating that all the available methods are known by the same acronym, PERCs, because it makes it hard to know which one people are talking about. Dr Nuzzo's method is less invasive and has better results than traditional PERCs surgery. Trouble is, he's in NJ, and not covered by our insurance. But there is a Dr Yngve in TX who does the same surgery, and is covered. Also, Dr Nuzzo and his team have not mastered the internet. His website is horrible. Details of the surgery itself is there, and that's great, but the website itself is not well designed, and is difficult to navigate. I feel that when so many of your patients are having to make long distance decisions, a well designed and informative website, complete with plenty of pre- and post-op videos, is essential. Dr Yngve's website is better, probably simply because he is part the University of Texas Medical Branch. Dr Yngve learned the method from Dr Nuzzo, and the results have been just as good. There are only a few videos on youtube.
I have been working on this post all week, so I just need to finish it. Long story short, we are still not 100% sure about what we are doing. BUT, Avery has an appointment with Dr Yngve on August 25th, and if all goes according to plan, she will be getting the SPML surgery on August 26th. IF we still think it's the right thing to do at that point. It is a hard decision to make. It was easy to agree to the surgery to place her VP shunt, because without it her chances of even surviving were minimal. This time, the outcomes are not nearly so black and white. We have been on the phone with our insurance, and the good news is that whichever one we choose, it will not be nearly as expensive as we were fearing it might be, since both would be covered. Thank you Aetna!! (It is sadly rare to be happy with health insurance!) The bad news is that in both cases, but especially the SDR, the amount of PT needed post-operatively will become rather expensive. We are trying to come up with some viable fundraising ideas.
Anyway, sorry if this has been muddled and unclear... That's sort of the way my brain is right now...!!! I will try to post again this week with some more fun and light news! Avery had her very first swimming lesson  today, and I know you'll be dying to hear about that!! It was GREAT!!!

Friday, July 01, 2011

A Picture Story: Losing a Tooth!


It should be noted that it was Avery's idea to pull it out!! She was very excited! She changed her mind right before it came out, but then once she saw it, she was excited again!!

It's gone! It's really gone!!!

The note she asked Daddy to help her write for the tooth fairy! 

Putting it under her pillow. When she woke up in the morning she had a new toothbrush (which she requested!!), a dollar, and a note from the tooth fairy :) 
P.S. I'm not sure whether she really believes in the tooth fairy or not.... when Grandma asked her about it a couple of weeks ago when her tooth was first wobbly, Avery very snootily informed her that the tooth fairy wasn't real! But she was very insistent about leaving a note for the tooth fairy, so who knows??!