Wednesday, October 27, 2010

Spina Bifida Clinic & Clubfoot Casting #2

Ruth had her first full spina bifida clinic yesterday. She met with an Occupational Therapist, Physical Therapist, Dietitian, and the main clinic doctor and nurse practitioner. It was mostly "meet the staff" visit, and updates on any changes.

The physical therapist and occupational therapist gave me some things to work with her at home. Mostly the same stuff as before, tummy time, looking at toys. She also suggested I sit her up (like in the corner of a couch), to help develop some of those muscles. She performed well for both therapists, even smiling at one of them. The dietitian talked about baby foods, what to look for to prevent some of the bowel problems common in spina bifida kids. She said to skip rice cereal, and start with a whole grain. And for the jar variety, look for ones high in fiber. We met with the other clinic doctor, she was very nice. She said her eyes looked nice and straight (it is common with SB kids to have one eye turn in a bit). Asked a lot of questions, we had mostly good answers. We talked about what to look for with problems with her hydrocephalus, since she does not have a vp shunt, and has not met with the neurosurgeon since leaving San Francisco. Right now, she thinks she looks great, so we just need to watch for changes.

We then headed over to Orthopedics to get her next set of casts for correcting her clubfoot. First they cut off her casts. He nicked the tops of both her feet, poor baby. It wasn't a deep cut or anything, but it made me sad. As the orthopedist put it, "It's a big deal to Moms." In other words, we are the only ones really bothered by that.

Her poor toes were all swollen, and her calves were red and black and blue. He told me that was common.

He also said to one of the nurses "That's a lot of correction for one week!", but when I asked him more about how many casts she would need, his answer was "I have no idea. Maybe 3-4, give or take 1. So, anywhere from 2 to 5.". I get the feeling that is the answer he gives all parents. I also asked about the heel cord cutting surgery, if he thought she would need it. He said that almost all need it, but "Never say never, and never say always". I get the feeling this doctor is used to dealing with parents! I liked him.

I thought I came prepared this time with a bottle to distract her, since she's not a fan of pacifiers. Well, for about the first 1-2 minutes, it worked. After that, she just wanted held. She cried the remainder of the time. Breaks my heart.

We go back next Tuesday for her next set of casts. Hopefully she will not need too many more!

Monday, October 25, 2010

3 Months old!!

I'm a few days behind on posting this, but little britches is now 3 months old!! As of 1 week ago, she was 9.5 lbs, so I estimate she is about 10 pounds now (hard to tell when they added 2-3 lbs of plaster to her legs).

She likes to be held, a lot, and is a big snuggler. Does NOT like her car seat, which makes the 1 hour drive over to Scottish Rite Hospital VERY long.

Medically speaking, she is currently visiting Scottish Rite every week for a new cast for her club feet. She also goes to the spina bifida clinic at Scottish Rite this week. She is no longer cathed, nor on any medication (yay!!), but they will check her kidneys in about a month to check for any damage. She has yet to see the neurosurgeon here to establish care, but as of yet she has not needed a shunt to drain the excess fluid from her brain. There is still a HIGH possibility she will need one, so please keep Ruth in your prayers that she stays stable and does not need one. So, right now, other than the very annoying casts on her feet, she is just like any other baby with a few extra appts!

Finding another great use for baby leg warmers - its a good thing I sell them, or I'd be broke! They reduce "the looks" you get when you have a baby in full leg casts, and also keep the baby poop off the casts! Bonus!

She is smiling at us, although it is hard to catch in a photo, I got pretty close in some of these photos.

She is also cooing - it is sooo sweet. Just melts my heart.

Done some growing!

Ruth has done quite a bit of growing this month! Look at a photo taken about 4 weeks ago compared to today... She has gained about 2.5 lbs (not including the casts)!

9.5 weeks old (about 7.5 lbs)

Today, at 13.5 weeks old (about 10 lbs)

Thursday, October 21, 2010

Tuesday, October 19, 2010

Clubfoot Casting #1

Ruth had her first Orthopedic appointment at Scottish Rite today for her bilateral clubfoot. The doctors were very nice.

Her feet were symmetrical (one wasn't worse than the other), and graded 16/20, with 20 being the worst possible. Her hips still looked good.

Since the club feet are symptoms of spina bifida, the doctor explained to us that we aren't curing anything, just treating a symptom. He said she will likely walk around 18 months at the earliest, but probably around 2 or 3 years old.

Her treatment plan is as follows:
(1) A series of full leg castings for 6 weeks, with a new cast each week. This will slowly work her foot around to the correct position.
(2) After the castings are done, they will do a quick out patient surgery to release the achilles tendon. She will then be placed in another cast for 3 weeks.
(3) She will then be put in a brace for 23 hours a day, for 3 months. The brace is a set of shoes with a bar between them, to keep her feet in an outward position.
(4) After the 3 months of brace wearing is done, she will then move to just wearing the brace during naps, and at nighttime, until the age of 2.

There is always the possibility of a more serious surgery if the above treatment does not work.

So, today she got her first set of casts. She did NOT like being held down. It would really have helped if she liked pacifiers, but even with the sweet stuff to dip it in, it didn't help soothe her much. She cried through out most of the casting. Poor baby!

Last Bath

So, last night I realized I hadn't taken any photos of Ruth taking a bath once we got her out of the hospital. Night time is full of giving little girls baths, and I haven't had an extra hand for taking those photos. Since Ruth got her casts on for club foot today (more about that coming), last night I figured I'd better get those photos in while she can still take baths!

She loves her baths, and I am sad we won't be able to do anything but sponge baths for a while.

Monday, October 18, 2010


So, something I read the other day got me thinking. What brings happiness in a person's life? What brings despair? Is a person with a disability doomed to despair? A "normal" person guaranteed happiness?

Life isn't filled with guarantees. Just because a person is born healthy, doesn't guarantee happiness any more than a person that is born with challenges are doomed to struggles and unhappiness. Life is what you make of it. Sure, a person with a disability may face struggles and hardships that a typical person may not. Does that mean they will be unhappy? Presented with the argument "I know someone with a disability that had a horrible life, so ALL people with that disability will have that same horrible life", one must sit back and think. Do all typical people have wonderful lives because they aren't faced with the challenges of that disability?

When Ruth was diagnosed last May at our 20 week sonogram, I was heartbroken. Presented with the fact that the child you love so much, one you haven't even met yet, will face challenges. But since then, I have moved past that sadness, to extreme happiness and love, and I would not change a thing about my sweet little baby. She has brought so much love to our lives, already. Her sweet little baby cuddles and coos. The people she has brought to our lives, from the people we met at the Family House and in the UCSF Hospital in San Francisco, to the other wonderful parents I have met online in the SB support group. Watching her achieve goals, such as just learning to eat, that one might take for granted in typical kids, has brought us such joy. I know as she grows, everything she accomplishes will bring us more and more joy. In just the few months of her life, she has touched so many hearts already. This world would be worse off already, had she not been born.

So, expecting mother's out there, if you are faced with the news no parent wants to hear, don't despair. There is joy and happiness for your child in this world, and for you, ten fold, for bringing that child life. All you have to do is embrace it.

Saturday, October 16, 2010

Pumpkin Patch

We headed out today to a small local pumpkin patch. It was very sunny, mid-afternoon, so the photos weren't the best, and Ruth wouldn't open her eyes (I don't blame her!).

Friday, October 15, 2010

She's a Fighter!

Lately my heart has been heavy. Heavy with the misconceptions people believe about spina bifida. Misconceptions that lead some mothers, when faced with a choice, to end their baby's life before it even has a chance.

I belong to a support group for parents of children with spina bifida, and I must say, it is the most positive, optimistic, supportive place I can imagine. I found the group shortly after Ruth was diagnosed at 20 weeks, and have looked to fellow parents for advice, support, or just a listening ear.

Often women come to the group after finding out the same diagnosis. Every time, EVERY time, the parents of this group rally around to offer words of encouragement and support. Positive stories, because, spina bifida is not a death sentence. These kids live very full and long lives, and enrich the lives around them. While I would prefer Ruth not to have been born with spina bifida, it is was she was given, and we love everything about her. She deserves to live. She is a FIGHTER.

A few weeks ago a woman came to our group, she had gotten news no expecting mother wants to receive. She was given an outpouring of support from myself and other parents. Questions answered, encouraging words. This journey is HARD, but it is so much more rewarding. She was open about being unsure about termination, she was given kind messages about why not to terminate, why all the women here did not terminate. But she is undecided whether her baby is worth giving life to. She told us she looked at our blogs, our children, and still was not sure her baby deserved life.

Termination. An action I never considered, never could have considered. I am pro-life. Babies deserve a right to live. I have been in this woman's shoes. Faced with scary news about my unborn baby. But never once did I consider my baby didn't deserve a chance to live. Why not adoption? To this woman, that is the dirty word. She even went so far as to post an online poll so people could vote on the life of her child. HER child. I am saddened. Beyond sad. This baby deserves so much more than an online poll to determine it's chance at life.

What can you do? At this point, please pray this woman finds it in her heart to love her child, to give her child a chance at life, even though that child may have needs that are inconvenient. And if that is not possible for this woman, pray she can find it in her heart to give the child up for adoption. Please PRAY. Not death. Not termination. LIFE. There is still hope. Her baby still lives.

UPDATE 10/28 I was recently told this woman chose to keep her child! How awesome is the power of prayer!

Tuesday, October 12, 2010

Urology at Scottish Rite

Ruth had her first urology appointment since leaving San Francisco at Scottish Rite Hospital. Daddy and the two preschool age sisters went with us.

Ruth first had a renal sonogram, which doesn't tell us much besides if her kidneys are swollen (one was at birth). Everything looked great on the sonogram. Ruth slept through the entire thing, she must of worn her self out crying the entire drive over. They had a little t.v. for the kids getting the sonogram, but since Ruth was sleeping, and isn't quite the age of watching t.v., it was made good use by her sisters.

We then met with the urologist and staff. I really liked him, very personable! He looked over Ruth's test results from San Francisco, and told us, based on that information he wouldn't do anything for her. No cathing, no ditropan, no antibiotics!! So we are going to do a trial stop period to see how she does. She could end up going back if she starts getting feverous uti's. He will test her kidneys for scar tissue in 3 months, and if that shows scar tissue, then she could go back to cathing/meds routine too. But for now, she is FREE!

(Side note: apparently different urologists in different areas of the country have different schools of thought on how to treat SB kids. The SF docs are much more aggressive than the doctors here. What one is better? It's not known. For now, unless otherwise indicated, we prefer the more conservative approach.)

Coming Up:

We go back to Scottish Rite hospital next week for orthopedics, which will most likely entail casting her legs for club foot. Then we go back the following week for the Spina Bifida Clinic.

We've had a little trouble getting in with a neurosurgeon here. The first one at Children's our insurance wouldn't cover, and the 2nd one at Cook's, we couldn't get an appointment until December. They may do a ct scan on her head at the Spina Bifida Clinic while we are there, just to make sure everything is still ok. Since she does not have a vp shunt, we still need to watch her closely for signs of increasing hydrocephalus (projectile vomiting, sunsetting eyes, rapidly increasing head circumference, bulging soft spot, overly sleepy, overly fussy).

A few photos from today, they were taken with my phone so excuse the poor quality:

Wednesday, October 6, 2010

Getting Bigger!

Ruth was weighed during her ECI evaluation, and has officially doubled in weight since birth! She is 7 lb 14 oz, as of about a week ago (born at 3 lb 15 oz)! They adjusted for her prematurity, and she fell at 50% height, 50% weight.

No new medical updates to report. She sees several specialists throughout this month.

A few photos!

Friday, October 1, 2010


I was looking through photos, and just love this one. Look how tiny she is next to Matt's thumb! She was 9 days old in this photo.