She has actually been climbing the stairs for many months now, but I realized I never really videoed her doing it. Here is a video of Ruth climbing our stairs at 18 months old:
Wednesday, February 1, 2012
Thursday, January 26, 2012
ETV = Successful!!
Ruth had her neurosurgeon appointment last week, and we couldn't ask for a better visit. Her ventricles are about the same as her last MRI (3 months ago), her head circumference is now following a normal growth pattern, and he doesn't want to see her again for another 6 months! She also doesn't have an MRI scheduled, for the first time, well... for the first time ever!! He told us that he considers her ETV to have been a success!! Pretty good, I'd say :) Ruth is only the 4th Spina Bifida patient he has done that particular surgery on (he has done many on other types of people), and he has had about 50% success rate. I'm glad she is in the right half of that statistic!
She still has the opening in the bone in her skull, and he told us, that since she has extra fluid (ETV does not drain the fluid like a VP Shunt would), it would likely always be there. But since it is small (about the size of a dime), it does not concern him for safety reasons, i.e., her brain is still very well protected by the rest of her skull.
Prayers are always still appreciated, as he told us, she will never be completely out of the woods. But this is a great step in the right direction!
A few photos of Ruth from about a week ago. She has turned into quite the toddler.
She still has the opening in the bone in her skull, and he told us, that since she has extra fluid (ETV does not drain the fluid like a VP Shunt would), it would likely always be there. But since it is small (about the size of a dime), it does not concern him for safety reasons, i.e., her brain is still very well protected by the rest of her skull.
Prayers are always still appreciated, as he told us, she will never be completely out of the woods. But this is a great step in the right direction!
A few photos of Ruth from about a week ago. She has turned into quite the toddler.
Wednesday, January 11, 2012
Ruth Update & Vacation photos
I've been slacking a little on Ruth's blog, no real updates for a while. So, here is a quick one to let everyone know how she is doing. I've decided to become a little less specific with her medical issues now that she is getting older, as I'm sure some day she would not appreciate all of that on the internet :)
Ruth is now 17 months old. How did that happen??
Walking:
Ruth is doing AWESOME with her walker! She got her walker right before Thanksgiving, and just loves it. She is getting faster with it, can turn herself around to face the right directions, and is confident in it that she will not fall. She still needs to work on steering it.. but that will come with more practice.
Her balance isn't quite where it needs to be to walk independently (no walker). She sees her ortho in a little more than a month, and I think he plans on putting her in higher braces called AFO's. These will go up to right below her knee, and should give her a little more stability. We do not think she will need such high braces forever, but she may need them now unless she proves us otherwise in the next month. You never know with that girl!
Talking:
She has also started talking a lot more. Her favorite sayings right now are "See it?" when she points at something, and "uh, oh - what happened?" when she drops something, or plays with the TV remotes ;) She also calls just about every animal "Meow". We are working on that one. But she really likes cats!
Neuro:
She had a rapid MRI yesterday just to check on things. That is a quick MRI with no sedation. It was at the end of the day, and I did not let her nap, so she was good and tired beforehand. She screamed at being strapped down for the first part of the scan, but by the end she dosed off and on enough for them to get the pictures they needed. We don't see her neurosurgeon until next week, but prayers are always appreciated. Her skull from her surgery last May still has not healed closed from where he drilled, because of fluid present in that area. That could mean she will end up needing a VP Shunt, or it could mean we will just continue to watch it and it will eventually heal. We will find out at her appointment how her scan looks compared to her one last September.
Urology
Ruth has continued to struggle with UTI's. Despite our best efforts, she continues to get them with very high fever every couple of months. Her kidneys are still healthy, so we are grateful for that. Prayers always appreciated to keep those darn UTI's away!
So, now for some vacation photos! Over the break, we traveled to see family in Arizona, and got to do lots of fun things! Here are some photos of Ruth in action.
To see all our family photos, not just of Ruth, check out my facebook or flickr accounts ;)
Opening presents with her sisters' help!
Carlsbad Caverns
Air & Space Museum
Air & Space Museum - She is looking at me in this photo, like "Really, another photo Mom?" lol
Zoo!
I am SOOOO proud of her here. She walked about half the zoo and kept up with the group! She was so tired after that, she slept in her Daddy's arms for the rest of the time. But she was so determined to walk, she would have NOTHING to do with us picking her up. She amazes me!
White Sands. It took us a couple weeks to get all the sand off her walker, lol.
Sledding with Daddy!
Ruth is now 17 months old. How did that happen??
Walking:
Ruth is doing AWESOME with her walker! She got her walker right before Thanksgiving, and just loves it. She is getting faster with it, can turn herself around to face the right directions, and is confident in it that she will not fall. She still needs to work on steering it.. but that will come with more practice.
Her balance isn't quite where it needs to be to walk independently (no walker). She sees her ortho in a little more than a month, and I think he plans on putting her in higher braces called AFO's. These will go up to right below her knee, and should give her a little more stability. We do not think she will need such high braces forever, but she may need them now unless she proves us otherwise in the next month. You never know with that girl!
Talking:
She has also started talking a lot more. Her favorite sayings right now are "See it?" when she points at something, and "uh, oh - what happened?" when she drops something, or plays with the TV remotes ;) She also calls just about every animal "Meow". We are working on that one. But she really likes cats!
Neuro:
She had a rapid MRI yesterday just to check on things. That is a quick MRI with no sedation. It was at the end of the day, and I did not let her nap, so she was good and tired beforehand. She screamed at being strapped down for the first part of the scan, but by the end she dosed off and on enough for them to get the pictures they needed. We don't see her neurosurgeon until next week, but prayers are always appreciated. Her skull from her surgery last May still has not healed closed from where he drilled, because of fluid present in that area. That could mean she will end up needing a VP Shunt, or it could mean we will just continue to watch it and it will eventually heal. We will find out at her appointment how her scan looks compared to her one last September.
Urology
Ruth has continued to struggle with UTI's. Despite our best efforts, she continues to get them with very high fever every couple of months. Her kidneys are still healthy, so we are grateful for that. Prayers always appreciated to keep those darn UTI's away!
So, now for some vacation photos! Over the break, we traveled to see family in Arizona, and got to do lots of fun things! Here are some photos of Ruth in action.
To see all our family photos, not just of Ruth, check out my facebook or flickr accounts ;)
Opening presents with her sisters' help!
Carlsbad Caverns
Air & Space Museum
Air & Space Museum - She is looking at me in this photo, like "Really, another photo Mom?" lol
Zoo!
I am SOOOO proud of her here. She walked about half the zoo and kept up with the group! She was so tired after that, she slept in her Daddy's arms for the rest of the time. But she was so determined to walk, she would have NOTHING to do with us picking her up. She amazes me!
White Sands. It took us a couple weeks to get all the sand off her walker, lol.
Sledding with Daddy!
Thursday, January 5, 2012
Uh oh, What Happened?
Ruth's new favorite saying! It usually has something to do with the TV (she loves to get the remotes and start button mashing)
Friday, December 9, 2011
Go go go...
Ruth is enjoying having her walker when we go places. She hates to be held, she wants down (normal for a 1 year old!). The walker lets her have her independence, without crawling around on dirty grounds! She hasn't mastered steering the walker just yet, but she is getting there!
Family Camp 2011
We attended the SBANT Family Camp this year right before Thanksgiving as a family. It is held at Camp John Marc, which is specifically for children with special needs. It is really a wonderful place. This year there were 24 families there, all with similar journeys as ours. It was nice to be around people that understand!
Lots of fun activities to do.
Scavenger Hunt!
Sports! She particularly loved the parachute! She just laughed and laughed!
Fishing! Her sisters did most of the fishing while Ruth stood in her walker, but Daddy came by to let her get a chance. She loved that too! This was her first chance to really use the walker and she was a little cautious, but she loved just being about to stand in it and the independence with not being held all the time.
Arts & Crafts! Although, it was a bit of a disaster. Ruth was ready for a nap, and I'm not sure what I was thinking giving her a fabric marker (we now have purple decorated pink pants! Whoops!)
There was a campfire with songs, ropes course (big sisters did that while we did arts and crafts), and a few other social gatherings and activities, that I did not take many photos at. I think next year we may recruit a grandma to come along to help with all our kiddos! LOL.
Ruth even made some new friends! These two were soo cute together, they both just loved and hugged on each other all weekend.
We are looking forward to coming back next year. I know Ruth will love it more and more as she grows! Once she is around 8 years old, she can go to the camp on her own (without the family). I am pretty sure her sisters will be jealous of that fact, they LOVED it there too! Lucky girl!
Lots of fun activities to do.
Scavenger Hunt!
Sports! She particularly loved the parachute! She just laughed and laughed!
Fishing! Her sisters did most of the fishing while Ruth stood in her walker, but Daddy came by to let her get a chance. She loved that too! This was her first chance to really use the walker and she was a little cautious, but she loved just being about to stand in it and the independence with not being held all the time.
Arts & Crafts! Although, it was a bit of a disaster. Ruth was ready for a nap, and I'm not sure what I was thinking giving her a fabric marker (we now have purple decorated pink pants! Whoops!)
There was a campfire with songs, ropes course (big sisters did that while we did arts and crafts), and a few other social gatherings and activities, that I did not take many photos at. I think next year we may recruit a grandma to come along to help with all our kiddos! LOL.
Ruth even made some new friends! These two were soo cute together, they both just loved and hugged on each other all weekend.
We are looking forward to coming back next year. I know Ruth will love it more and more as she grows! Once she is around 8 years old, she can go to the camp on her own (without the family). I am pretty sure her sisters will be jealous of that fact, they LOVED it there too! Lucky girl!
Thursday, November 17, 2011
Walker!
Ruth's PT brought her a loaner walker to use until we get her own ordered.. She absolutely loved it! She may have been a little too brave, she ended up with a fat lip by the end of the PT session.. but it didn't stop her at all. She got right back up there and kept walking!
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