Monday, August 2, 2010

Wipeout

We watch Wipeout with the kids sometimes, and now Damon has tried his hand at building his own obstacle course.


YouTube Video

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Friday, July 30, 2010

Girl Time

Just having some fun with my girlie girls.

YouTube Video

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Wednesday, June 23, 2010

What a difference a year makes

One year ago today, my life was shattered into a million pieces. I felt like nothing would ever be the same again, and I had no idea what the future held for me. I thought that every dream I had for my life and my family and my children had changed. I couldn't eat, I couldn't sleep, and I shook. My hands would not stop shaking, and I could not stop crying. The way I felt about this little baby girl inside of me had changed so quickly and so immediately. I wasn't sure what her quality of life would be, and I didn't know how our lives were going to change once she got here. I wanted to hope for the best, but there were so many unanswered questions, and terrifying statistics. All of the sudden google was the scariest place in the world, and the words spina bifida were completely and totally depressing.

As the week went on, we found hope. Through prayer I realized that I needed to change the way I was thinking about this child. She was going to come to me exactly how my Heavenly Father wanted her to come to me. He had a plan for our family. And this was not the big "trial" that I always worried about because my life was far to easy. This was my daughter who I will love and adore, and she will add so much to my life. This baby is not my burden, she is a blessing. It sounds so simple, but at the time it was extremely profound. I also found other mothers online who knew what was to come with the spina bifida. We found a message board that we were able to ask them questions, and we looked at their children on blogs. These were happy, adorable, wonderful kids and we felt so much better seeing their stories. We also learned about the MOMS study, and that gave us purpose. It was less than 4 weeks after the diagnosis that I had prenatal surgery for Kaitlyn. It went by VERY fast, and we were able to focus all of our energy and attention on getting admitted and qualifying for that clinical trial. And it was very hard, and miserable, and difficult, but we made it through, and I'm so glad we did.

Before we knew it, our daughter was born. She was so tiny and adorable. She looked just like Damon and had the same chubby cheeks and Audrey. She was perfect, and I loved her so much. I am so grateful that we had this last year to grow as a family. That we were able to add this wonderful little girl into our lives. She does so many things we never thought she would do. She moves her legs and feet and toes, she rolls around, and she is very social and sweet.

Sometimes I get caught up on the little things, like she can't stand up and bear weight in her legs yet. And she isn't sitting up for long without tumbling over. I go to church and see the younger babies doing some of it, and I forget that she has to overcome so much more than they do. I am so proud of her, and I know she belongs in this family. Kaitlyn is our miracle.






Thursday, May 27, 2010

Kaitlyn in a good mood



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Wednesday, May 26, 2010

Swimming

Fun in the backyard

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Tuesday, May 25, 2010

Audrey enjoying the library books



I love finding this in the family room. Imagine when she can actually read.


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Thursday, May 20, 2010

Blogging from my iPhone

Hey guys, guess who is going to blog more now that I found a blog app for my iPhone? Awesome!

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!

YouTube Video

Here is another video of us jamming out to "The Princess and the Frog," while we were on vacation.

YouTube Video

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.

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Tuesday, February 2, 2010

The goings on at the Burr House

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.

Audrey's lovely new bruise.

How Kaitlyn's back has healed.
Tummy Time!
Kaitlyn getting her first CT scan.

Damon and Audrey doing some coloring.
Homemade Play-Dough Family Night.
Aww, look at that smile.




Saturday, January 23, 2010

Some Thoughts

I've been thinking a lot recently about some of the challenges and joys of raising a child who has special needs. In so many ways, it is just like raising my other children. I love each one of my beautiful babies, and they all are so unique and adorable. One of the things I have noticed about raising Kaitlyn though, is that the valleys are lower and the peaks are higher. Like when we found out at her ultrasound that she had spina bifida, and the whole rest of the pregnancy, the surgery, living in SF, missing Damon and Audrey, obviously that was the lowest valley. Then seeing your beautiful child succeed, and overcoming the obstacles that she has like learning to eat, and breathe, seeing her legs kick and move for the first time. Those are the highest highs. Things I took for granted with my first two. I'm sure that these peaks and valleys will only grow larger with time. Even now, as I go to church and see all the babies Kaitlyn's age or a little younger doing things Kaitlyn hasn't yet, I start to worry. The worrying never goes away. I always wonder about each little delay, and how the disparity between her and those her age will grow with time. But then I see my beautiful little girl smile at me, and I know it took her longer, and she had to work harder for those smiles, and I know that I am more proud of that smile than I was of any of the others. I can't imagine the peak we will have when she takes her first step, when she says her first word. It really emphasizes for me the principle that you have to know the bad to appreciate the good.

In church last Sunday part of a lesson that was given was about all the qualities and gifts we are given from our Heavenly Father. The teacher went on to list about 15 of these, and I realized that none of these had anything to do with being intellectually gifted. I have no idea what is in store for Kaitlyn. I do know that she has mild hydrocephalus, and that her brain has a few abnormalities from the chiari that she had in utero. How those will manifest later as far as learning disabilities, we don't know. I always seemed to equate my self-worth and the essence of who I am with the way I think and my intelligence. Then, when we found out about Kaitlyn, my views have slowly changed. Some of the gifts that were mentioned were, the ability to love, the gift of faith, the gift of charity, etc. I feel like so many who are limited in intellect have these gifts in abundance. I look at Damon and Audrey, and the essence of who they are is not identifying letters and numbers and long in depth conversations about our world. It is their innocence. The fact that they don't judge others, that they love unconditionally. That they forgive easily, that they give hugs and kisses away constantly. I love them more than I can express, and it is not because I think they have so much ahead of them, it is for who they are right now. I love Kaitlyn so much for who she is right now, and no matter what happens in the future, I am going to be so proud of her for everything she is able to accomplish. I am so grateful that I get to learn these lessons, and that I get to have these high peaks. Kaitlyn is an incredible blessing to our family, and I am so lucky to be her mommy.

Sunday, November 22, 2009

Great news

We got some fantastic news this week. The pediatrician at the Houston spina bifida clinic was amazed at Kaitlyn's leg strength and movement, and told Shelly that she would definitely be able to walk someday! She said her leg function was about the same level as kids with lesions starting at the S1 or S2 vertebrae (meaning she may be able to walk with no assistance at all or with ankle braces), even though Kaitlyn's lesion was much higher, starting as L2 (we would have expected her to need full-leg braces and crutches, and maybe be confined to a wheelchair when she gets bigger). Of course everything is still "wait and see," but we are SO happy that things are looking so promising for her.

Our kids are all so fun right now. Damon is an incredibly sweet little boy. He is very kind to his two little sisters, and often will say to Kaitlyn, "Who's a cute baby? Who's a cute baby?" He is very helpful, and is our little errand boy. He has been going to preschool and loves to learn his new letters. He is very social, and very funny. He's been watching old He-Man episodes on Hulu with his daddy, and gets so excited when Adam and Cringer turn into He-Man and Battle Cat... his heart rate probably jumps to around 300 every time. He also has an imaginary friend named "Bony," who he only mentions once every couple days. Apparently he has "bone teeth," probably inspired by Skeletor. But he's not scary, and he tells us knows he's just pretend. The other day he was saying his prayer and just casually prayed for "the other member of the family, Bony."

Audrey is most certainly two. She gets into every cupboard, cabinet, drawer... and the way she climbs, nothing we own is beyond her reach. She is such a bruiser and always so active that she keeps getting hurt -- she burned her fingers and arm on a hot pizza pan the other day -- but she's so tough that she doesn't mind as much as we do. She and Damon love to go play in their "rocket ship," which is just one of the cupboards in our kitchen. Her vocabulary has exploded, and can pretty much communicate everything she wants to us. This morning she said, "Mommy, I so pwetty." She is always showing off, saying "Wook at me!" She loves to point out "twees" and "fwowows." She calls her daddy "Kenno." Tonight she was encouraging Damon to kick the "socco baw!," saying, "You can do it, Danin!" It is an often frustrating but very fun age.

And Kaitlyn, again, is doing awesome. She rolled from stomach to back. Her legs are SO strong; sometimes we think they are even stronger than our other kids' were. Maybe we just think that because we have to fight her kicking when we catheterize her, which we only have to do that 4 times a day now. In pretty much every other way she is just like our other kids(including the acid reflux; she's on Zantac, which helps), especially in appearance. She looks just like they did. We love all of them so much.






On another note, there is a family we got to know when we lived in the Family House in San Francisco who could desperately use any help that anyone can provide. They learned that their 3-year-old son, T.J., had a brain tumor this past summer, rushed him into surgery, and are now slowly watching and praying that he regains as much function as possible. They are wonderful parents and have been through so much, living for months on end in that house with their 9-month old son and spending all of their time in the hospital. He's going through both radiation therapy and chemo right now. Any help you can provide, even a few dollars, would really bless their family. There is a website you can donate through, www.donationsfortjgarcia.com. Thanks so much for your help.

Saturday, November 14, 2009

At long last

... I found a new job. It's a litigation boutique firm called Edison McDowell & Hetherington (see here). I started on Thursday, and so far am quite happy.

It was quite a whirlwind, but it couldn't have come at a better time, as it plucked me away from a miserable contract job doing an electronic document review. For those who don't know, firms often hire attorneys on a contract basis for weeks at a time to review documents. This firm was, no surprise, up against a deadline and needed a ton of the client's employees' emails reviewed. But the client wanted to staff the project leanly, so there were six of us staring at computer screens 84 hours per week and clicking furiously (e.g. this document we can produce, this one is privileged, this one is irrelevant, this one screws us over, etc.). And it was a patent case involving mechanical parts for downhole oil well operations, so the emails we were reviewing were all written by engineers. No offense, Dad, but you guys write very, um, 'technical' (i.e. soul-crushing) emails. My back and eyes were quite displeased; my eyeballs would quite literally shake in their sockets for the last three or four hours of each day. Plus, almost every day I had an interview or a meeting with a recruiter or something like that, which would take up a few additional hours. Add that to a 45-minute commute, and a newborn who enjoys slowly savoring her bottles in the middle of the night. I've been in a few trials before, where we'd work 22-hour days for a few weeks straight, and even that was more tolerable; at least then the work is interesting and you can let your eyes drift from the computer screen occasionally. We were grateful to have some income, but I deeply resented the invention of email and its unfortunate effect upon the practice of law.

In the midst of this, on Tuesday morning, I got a call from a friend from my old firm. He had been networking and advocating for me, putting me in touch with various people he knew around town. Apparently he had mentioned my name to an old law school friend of his, a partner in a small litigation boutique, and by happy coincidence, he and his partners had just decided the day before that they needed to hire someone new. They wanted me to give them a call, and when I did, they asked if I could come in that afternoon. I didn't even have a suit, since I was downtown slogging away on the document review, but they didn't care. The interview went great; I met with all three of the named partners, and they wanted me to come back the next morning to meet with their fourth partner, who works up in Dallas. On Wednesday morning I met her and a few of the associates, and then they offered me the job right afterwards, saying they would be eager to get me started the next morning, Thursday. After a 3-minute phone call to Shelly (who didn't need any convincing), I accepted and then gleefully skipped off to go quit the contract job.

So far the firm has been great. The partners and everyone else are all extremely nice, friendly, likable people, which for me is by far the most important factor affecting whether or not I enjoy my job. The pay is less, but enough for our needs. The firm is quite busy -- they started with eight attorneys just this past January, most coming from a bigger Texas firm (Bracewell & Guiliani). In the ten months since they have now hired nine more attorneys; all of their clients followed them from Bracewell, and they just keep getting more and more work. The environment is much more collegial and close-knit than at my prior firms; everyone seems very proud of this new enterprise and dedicated to building it up. And so far, they really like my work product. I know it's only been two days, but it looks like I'm really going to like it there.

To yet again restate the obvious, we absolutely recognize and are deeply grateful for the way our path has been so unmistakably guided. It's not even remotely subtle. My last day at my prior job was in July. One week later went to San Francisco and qualified for an extremely rare surgery which so far appears to have been a wild success. It would have been infinitely more difficult for Shelly to have gone through that alone, if work had kept me in Houston. And then, just weeks after returning, I find a new position, one that so far looks like it will be a great fit for me. We've been so incredibly blessed, clearly much more so than we deserve. So again, many many thanks for all your prayers, your faith made it happen.

Monday, November 2, 2009

Kaitlyn kicks!

We wanted to post a video showing you all how well Kaitlyn is doing. As you can see, her legs move quite well. Of course, her legs weigh mere ounces now, and we can't guess yet how strong and coordinated they will be when she gets bigger, but we are very optimistic.

video

Saturday, October 31, 2009

Spina bifida 101

We've been home for two weeks now, and are loving every second of it.  We're still amazed at how nice it is to have our own kitchen and bathroom, ceiling fans, TV, cars in the garage (as opposed to parked six or eight blocks away), and the list goes on.  Mostly, we are enjoying having our family all together in one place.

Kaitlyn is now five and a half weeks old.  Next Friday, the 6th, would have been her due date, and she is determinedly packing on the pounds.  There's no way she'll catch up to Damon's pace (17 lb at 2 months!), but she's doing pretty well.  At her last checkup on October 20, she weighed 6 lb 6 oz, so she had gained about an ounce a day since she left the hospital.  At that rate, she's probably around 7 lb today.  She's a very good baby, calm, has her alert times, and is occasionally smothered by her brother and sister.  A few pics are posted below.

We wanted to give a quick summary of how she is doing in each of various areas that are commonly affected by spina bifida.  (Tamara, Rachel, and any of you parents out there, hopefully we're not too far off in how we describe things below.)  We'll try to do the same thing every so often down the road, just so you all can get a picture of her status as compared with what one might expect.
  • 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. 
So there's a sum-up of the various issues we will be watching as Kaitlyn grows.  So far she seems to be doing very well, and we are so grateful for that.  As always, we thank you all for your prayers, understanding, love, and support.  Looking back on how scared we were when we first got the diagnosis, it's incredible how much more hope and optimism we have that she can have a happy and fulfilling life.  She is a beautiful little girl, and we are so glad to have her in our home.  And she is cute, right?



























Wednesday, October 14, 2009

HOME!

  I can't believe the day has finally come.  I fly home to Houston with Kaitlyn in a few hours, and Kendall will make the LONG drive back after dropping us at the airport.  Kaitlyn couldn't be cuter, and we absolutely love having her with us all the time.  Now we just need to pick up Damon and Audrey and we'll be together as a family again.  Life is good.  Thanks for all the prayers.  Kaitlyn is doing great, and we are so grateful.  So, get ready for us, we're on our way!!

Wednesday, October 7, 2009

Good MRI News

We were up bright and early this morning to take Kaitlyn to have an MRI.  They had to put in an IV to sedate her throughout.  She did well, but when they woke her up, they had to give her oxygen for awhile, and she was quite drowsy all morning.  So, before I explain what the MRI showed, you should know that when I had the two MRI's during the pregnancy, they showed that Kaitlyn's Chiari II malformation went down to the C3 vertebra.  That means that her brain had been pulled down by the suction that the opening on her back had caused.  Kaitlyn's Chiari was slightly worse than the average baby with spina bifida (about C2).  My theory is that she had an open lesion (not covered by a sac), and thus there was a greater suction.  That, I believe, is also the reason why her ventricles were so small before the lesion was closed during fetal surgery.  Once closed, the suction stopped, and her ventricles began to slowly fill with fluid.  The last week of my pregnancy, her vents were measuring 14 and 11, which is slight hydrocephalus.  Since birth, those numbers have held steady and not increased.  We'll keep watching.

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.