Walking, here I come!!!!

It's true... Emma is 18 months old and starting to walk while holding on to things!!!!  What a miracle she is!  It helps her to wear thick soled shoes since her ankles roll inward a little bit but a simple arch support should help correct that if needs be as she gets older.  Woohoo!!!!

The hole in her heart still hasn't closed on its own yet but the cardiologist isn't too concerned at this point.  When she turns two they'll do an extensive ultrasound to see if the left chamber has gotten too large from the blood crossing through the hole and if surgery to repair it would be necessary.  He suspects that the flow of blood to it is pretty restricted and would take years to enlarge the chamber too much.

Her bladder walls are thickening from being constantly full and not frequently expanding and contracting since she can't empty it on her own.  Thus we begin again to cath her twice a day.  It's actually a relief to me to know that her poor bladder is finally getting emptied instead of just kindof on constant overflow.  As she gets older and stops wearing diapers she may be able to use the potty sometimes and need to be cathed others or she may need to be cathed all the time, we'll see!

Enjoy some fun photos!  :)

 Sittin' pretty, ready for church.

 Mommy loves to do my hair!

Playing with the cool truck that my Great G-pa Ellgen made.

 Thumbs up! (16 months)

Standing tall. (16 months)

Peek-A-Boo!

Or little girl turned 10 months old yesterday, time has begun to FLY since she's been doing well!!

Jumpin' for Joy!

Can you believe it?! Before Emma was born we didn't know if she'd have any mobility in her legs or feet... Just look at her go! (Shawn and I are jumpin' for joy, too!!) She is such a miracle. Last week her doctor started her on regular calorie formula because she's gaining weight so well. In fact, he even said she was "pudgy". Who knew that could fell like such a compliment! :) Also, the other day we were at the dentist and a complete stranger who had no clue of her past said, "She looks so healthy!" I just smiled and thanked her, but inside I was beaming. I could've never imagined that by the time Emma was almost 8 months old she would be just like any other baby. There is always the worry that her shunt might clog or that her ankles and feet may not work just right when she gets older, but all is well. In fact, her physical therapist was very impressed with her ankles. When she puts her weight on them while we hold her up they stay nice and straight without rolling or collapsing.



Oh my gosh, talk about kisses that just melt your heart.

Look what I can do mom!

This is an outfit I wore when I was a baby.

For the love of food!!

Our little lady bug.

No More Feeding Tube!!!!!!

Hooray for Emma! Today is her 6 month birthday and there is so much to celebrate! She was eating so well that on August 15th we took her feeding tube out for a 2 week trial run. Now, almost 6 weeks later, she's still going strong! Her weight gain hasn't been consistently an ounce a day like her pediatrician Dr. Terashima would like, but at least she hasn't lost weight. I tell you what, it is sure nice to not have to always worry about her pulling it out (especially now that she is a lot more coordinated with her hands) or it getting wrapped around her neck, or catching the end in chairs when you stand up, etc, etc... Not to mention how nice it is to not have to wash all the syringes. I finally took the back-up tube and face tape out of her diaper bag yesterday and it was so liberating! She is still on a higher calorie formula for now (27 cal.) but we hope to slowly back it down to the normal 20 cal.

Dr. Garnreiter, Emma's cardiologist at Primary Children's, saw her 2 weeks ago and said that her heart murmur (VSD) is still there but continues to improve. He took her off the Lasix which was her only medicine at this point... No more medications to keep track of (another HOORAY)! We won't need to go back to cardiology until she's a year old. :)

Emma's shunt incisions have healed beautifully and it continues to work properly. She scratches at it a lot on the side of her head and when I asked the neurosurgeon about it he said that is very common because it itches while it's still healing. I asked my dad if his shunt itches and he says that it does and he has to rub it. Poor little thing, I just keep her finger nails trimmed and hope she doesn't scratch it too hard.

Developmentally she is right on track according to Susan the physical therapist. We couldn't be more thrilled that the spina bifida itself has had such a relatively small impact on her motor skills... We will know more as she gets older if it will impact her ability to walk, but things are looking good. Below is a picture of her learning to sit up that I took 2 weeks ago.

Our Little Aggie

Sweet girl, 5 months old.

On to bigger and better (I think) things, like rice cereal...

...and sweet potatoes!!


I love to see those tiny toes wiggle against all odds!

Learning to sit up!

Now that takes some skill.

Shunt Surgery - July 19, 2011

Emma's shunt surgery went really well. The hardest part for Shawn and I was as she was comming out of surgery, She was really disoriented still from the anesthesia. She looked so confused and when she started to cry her voice was really hoarse from the breathing tube that had made her throat raw. Hardly any sound came out at all and it was heart wrenching. She had a brief allergic reaction to either the Betadine or Lortab, but the recovery went well otherwise. I was able to stay in her room overnight and we were home by 12:30 the next afternoon. The only pain medication she had been on was Tylenol and she was doing great... Until about an hour after we got home. Then the crying (screaming) began. We finally were able to get her some Percocet at 11:00pm and she was finally able to get some rest. The surgery involved two incisions on her head and one on her tummy (the fluid drains down a tube into her abdomen where it is absorbed). She will need the shunt for the rest of her life. Unfortunately they tend to plug up and malfunction and she may need to have it replaced anywhere from 5 times in the first year to once in 5 years, we'll hope for the latter. She is doing great now, almost two weeks later. We have noticed a big improvement in her hand/eye coordination and overall development, she smiles a lot more and has even started to laugh! :)

Ok, It's just sad that they have hospital gowns that small.

With G-ma and G-pa Vernon post surgery.

Emma and Grandpa are now "shunt buddies". You can see the drainage tube under her skin running down the right side of her head.

Luckily they only needed to shave a small section of hair.

Daddy is funny!

An Eventful Day

We met with Emma's Neurosurgeon today at Primary Children's. She hasn't thrown up for a few days... but she is in pain. She has serious crying (screaming) fits through out the day for anywhere from 20 min to 2 and a half hours. At night she either sleeps for eight hours straight from exhaustion or fusses every hour. It's so hard to know what the problem is with any baby who cries so we have been trying everything under the sun from different formulas to gas medication with no success but were still confused since she hasn't been showing some of the "classic" signs of hydrocephalus (being unable to look up, rapid increase of head circumference, etc.). The neurosurgeon ordered another CT scan to compare with the one we had done in April and I took a picture of the computer screen comparing the two (see below).

Her second CT scan at almost 4 months old.

CT Scan of a normal brain. http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/hydrocephalus/

Looking at a cross section of Emma's brain from above, the dark shapes in the center are the ventricals that have spinal fluid built up in them. The image on the right was on April 23rd and on the left July 18th (today).

She is scheduled for surgery to get a shunt at 8:15 tomorrow morning. I'm nervous about her having to go through the surgery, but can't handle another minute of seeing her in pain and not being able to comfort her. I just hope it helps.

Such hard work!