Monday, August 2, 2010
Friday, July 30, 2010
Wednesday, June 23, 2010
Thursday, May 27, 2010
Wednesday, May 26, 2010
Tuesday, May 25, 2010
Thursday, May 20, 2010
So, here is a picture of the kids visiting Kendall at work. I'm sure all the attorneys at his firm loved the ruckus that we brought to the floor. :)
And, for those of you not on facebook, here is Kaitlyns new trick. I had to rescue her from underneath the coffee table earlier this evening. Go cute roli-poli!
Here is another video of us jamming out to "The Princess and the Frog," while we were on vacation.
Here's Audrey swimming with her daddy.
Ok, so now that I can post a quick video from my phone I have no excuses for not updating the blog. Count on me posting more than 3 times a year. Life is good here in hot Houston, we are just waiting for the pool to open and we'll make sure we take videos and pictures of all the swimming we are doing.
Posted using BlogPress from my iPhone
Tuesday, February 2, 2010
I was just reading our other website from before our lives took a dramatic turn in a new direction, and realized we haven't been updating on all the fun new things that are happening at the Burr home. Our kids are still hilarious, and I thought I'd try to give a glimpse into some of the silly things coming out of their mouths.
We've had to be very careful during our scripture reading, because Damon has become so afraid of, "the earth being on fire". He will wake up in the morning and ask, "When is the earth going to be on fire?," or sometimes, "When will the earth be fired?" (And of course, "earth" is pronounced "euwf.") We reassure him that it won't be happening for a long, loooong time. The other night we were talking to him about what he was most excited to do when he grows up, and he said he can't wait to be able to cook dinner and go to work and drive cars and read. I can't imagine living in our world and not being able to read. It must be tough for our little guy, who understands so much but is so limited. He also wants to be a paper boy and a builder. And he kept talking about being married; was really funny to hear a four-year-old talking about "my wife." He has been attending preschool 2 times a week, which he loves. I teach one week and get 5 off. It's been going well. We learned about numbers and made cheerio abacus's (?) yesterday.
Audrey is a very fun little girl. She is quite the bruiser, and will run/jump/walk all over you if you let her. Actually, the other night she woke up a couple times in the middle of the night needing comforting. The next morning, she had a HUGE bruise on her forehead; we figured she fell off the bed and hit her head on her little rocking chair. I remember as a girl, I couldn't understand how anyone had knees that weren't scraped and bruised. I think that will be Audrey. Her hair is getting so long and still is very curly with lots of ringlets. She always has to pull out the bows I try to place in her hair, and as a result she has hair sticking in all directions. She has an enormous vocabulary and loves to sing all the themes from her favorite cartoons. At night she prays for, "mommy, daddy, da-nun, Kay-wah, Chocolate (her cousin Charlotte), Pablo, Uniqua, Tasha, Austin, Tyrone (The Backyardigans), Dora, Boots the monkey, Tico, Benny," you get the idea. She has also started to show many signs of being ready to potty train. I am in denial, and would prefer to put this off. Right now I would rather change diapers than take my 2 year old to the potty every 15 minutes and clean up accidents. Damon was VERY difficult to potty train, and I tried about 15 methods, and threw away about 20 pairs of underwear, before stripping him naked and trapping him in the kitchen with his little potty. That did the trick for him. We tried this with Audrey last Saturday, and after 8 accidents on the floor, we decided to postpone the potty training. I was disappointed but a little relieved.
Kaitlyn is doing well. She cries more than my first two, and I am constantly wondering why that is; hopefully it's all just normal baby stuff, but we'll always worry with her. At this point I think she has some acid reflux (we are treating it with zantac), and some colic. She also is not able to calm herself well. We're working on it, and today I decided to try the old standby: stick her in the laundry room in her bouncy chair while the washer and dryer are going. Success! I was able to have my hands free for 2 seperate naps. She is snoozing right now actually. I have a feeling laundry will be done in a much timelier manner from now on. We now have a physical therapist: Miss Jackie, who will be coming for 30 minutes once a week. Some of the things we are working on are: rotating her joints, trying to keep her upright while sitting up, holding her head up, tummy time holding her head up, pushing onto her knees during tummy time. Fun stuff. I'm doing my best to incorporate these things throughout the day while holding her. She has her first spina bifida clinic next Tuesday. We will meet with the neurologist, orthapedics, urology, and pediatrician. Should be very informative, and they can give us a good sense of how she is doing. She'll also have another urodynamics test to see how her bladder is doing, and if we are cathing enough. As far as the CT she had earlier, we got a printout of the results, and it looks like her ventricles and hydrocephalus has increased, "slightly," since the MRI she had as a newborn. They didn't tell us what the measurements were exactly. No one seems the least bit alarmed, and the head ultrasound we had a while back showed that they were up slightly from birth as well. The increase was actually so small it could be due to measuring differences. Her vents are most likely holding steady from the head ultrasound. We'll see what the neurologist says on Tuesday. All in all, I'd say she's a little champ. She's 14 pounds, and sleeps through the night.
Kendall is enjoying his new job, and really likes everyone he works with. He is a tremendous help every night when he gets home. I'm sure I look like a crazy lady half the time trying to take care of all 3 kids. I think I am finally finding some balance in my life, running around preparing meals, changing diapers, cathing, clothing, cleaning and loving my little munchkins. All of you parents of 3+ kids, why didn't you warn us? Actually, I hear all about how hard going from 2 to 3 is now that I have 3! I'm sure things will ease up a little once Damon starts school in the fall. I am really a very lucky mommy. I have three beautiful, perfect kids that still let me hug/kiss/hold them (most of the time), and a wonderful hard-working husband who loves us and helps me with all of the typical "wife" jobs. In the past, I warned Kendall that at some point in our lives, my job at home would become more demanding and difficult than his at work, and at that point I would certainly be needing/asking/requiring him to come home and help. He was a huge helper even when I had 2 easy kids at home, but he has really stepped it up now that I am run ragged every day.
And now, finally, here are lots of pictures of the kids. I have been absolutely atrocious at taking pictures and videos lately, as well as uploading these pictures to our blog, so these are not as recent as I would like, but to make up for that, I am posting quite a few. Enjoy.
Saturday, January 23, 2010
Sunday, November 22, 2009
Saturday, November 14, 2009
Monday, November 2, 2009
Saturday, October 31, 2009
- Hydrocephalus: Up to 90% of children with spina bifida have some degree of hydrocephalus, or fluid buildup in the brain. Kaitlyn technically has this -- her ventricles have measured a little high (see here) -- but it is not symptomatic. We're watching her carefully for symptoms like excessive vomiting or fevers, measuring her head size, making sure her fontanels don't feel full, making sure she's alert, etc. We've read that for babies who had the prenatal surgery, the median length of time after birth for ultimately needing to have a shunt placed is about 180 days, so we'll need to keep watching this for a while to come. But so far so good.
- Chiari II malformation: Where the brainstem is pulled down into the cranial vertebrae, leading to the hydrocephalus described above. Children with this can also develop problems with swallowing, breathing, etc. Kaitlyn had this malformation in the womb, but it was reversed by the prenatal closure, as we had hoped. (We wrote about this in our October 7 post.)
- Leg mobility: The most obvious symptom of spina bifida is some degree of paralysis and loss of sensation in the legs. Kaitlyn's level of myelomeningocele (hers was from the L2 to S1 vertebrae) would be expected to need crutches and long leg braces up to the thigh or waist, and would probably need a wheelchair for long distances (see here). But we, and all of the nurses at UCSF, are amazed at how strong and active her legs are. She kicks very vigorously at times, moving her hips, knees, ankles, and toes, and appears to have at least some sensation when we tickle her feet and legs. We'll have to just wait and see when she gets older how well she does with crawling and attempting to stand or walk.
- Orthopedic problems: Children with spina bifida are more likely to have clubbed feet, hip dislocation, and scoliosis. Kaitlyn does not have any of these issues at this point.
- Bladder issues: Nearly all people with spina bifida have some bladder dysfunction. When Kaitlyn was born, she had some slight hydronephrosis (swelling of kidneys), so they had us regularly catheterize her each time we changed her diaper. The day she was discharged we took her to get urodynamics, where they fill her bladder with a dyed liquid and take X-rays to see how her bladder reacts. There was some good news: they did not observe any reflux of urine back up to the kidneys, and her bladder looked smooth and elastic like it should be. But they did observe what they call dyssynergia; when the bladder constricts to push out urine, the sphincter at the bottom should relax to release it into the urethra, but Kaitlyn's constricted instead for a few minutes, so she wasn't able to release it when she wanted to. She does usually urinate on her own, but we'll keep catheterizing her (5-6 times a day) just to make sure she voids as she should. As of now, this is the only major difference between her and our other newborns.
- Bowel issues: Children with spina bifida often have bowel problems leading to chronic constipation, and often need a bowel program to gain social continence. This has not been a problem for Kaitlyn yet; usually this is not an issue until they start eating solid foods. Many newborns with spina bifida do tend to void all stool constantly, creating severe diaper rashes. But Kaitlyn doesn't have a rash yet, and it looks to us like she is intentionally pushing out her BMs; we see her grunting and pushing. We don't know if this means anything yet, but we're hopeful because it appears that she does have some feeling and control in that area.
- Tethered spinal cord: This is where the cord gets tugged by scar tissue near the site of the surgery, which can over time lead to further nerve damage. If any such problems develop in the future, she may need surgery to release the tension.
- Visual problems: Children with spina bifida often have strabismus, where one or both eyes turn in or out. Kaitlyn's daddy had that condition (and even had two eye muscle surgeries to correct it), so we're definitely not counting that out yet. But so far her eyes don't appear to drift too much.
- Learning difficulties: Learning difficulties can be caused by hydrocephalus, infections, etc. We obviously won't have any way of knowing whether Kaitlyn has any such problems for awhile. Yet another "wait and see" issue.
- Latex allergies: Up to half of all kids with spina bifida are latex sensitive, so we will need to be very careful to avoid any products -- medical supplies, rubber bands, tires, balls and other toys, etc. -- that may contain latex.
Wednesday, October 14, 2009
Wednesday, October 7, 2009
So the great news from the MRI today is that her Chiari has completely reversed. Her brain is now in a normal position, which is awesome. We are so grateful that we were able to do the surgery. It was definitely not an easy journey, but we choose to believe that all of the positive developements that we've seen in our daughter are largely due to the early intervention. We're thrilled at each bit of good news.
It's looking like she'll be released by Tuesday of next week. That would put me back in Texas in a week! Hooray. Then Kendall will drive to Utah, pick up the kids, and continue the 24-hour drive down to Houston. I can't wait to have all of us together again. There are 2 little ones that are just waiting to be tickled and smooshy kissed.