X-rays, CT scans, and an MRI...

Well, we had a wonderful 2 months with nothing but the "normal" doctor and physical therapy visits. I think I took it for granted...On Thursday I took little Laurie down to Primary Children's Medical Center for a visit at their physical therapy/rehab unit to take a look at her torticollis (tightening of the neck muscles on one side, resulting in a tilt of the head). When the doctor came in to see us, she did her routine examination and question asking and said, "Laurie doesn't have your normal case of torticollis..." There were several areas of concern. I'll name all the ones I can remember:

1. Her neck muscles are REALLY tight and slightly enlarged on her right side.
2. She has plagiocephaly (flat head).
3. She has "flexible scoliosis". Her spine curves when she's in a resting position. If we don't fix it by doing stretches, exercises, and positioning - then it will result in permanent scoliosis.
4. It appears that the scoliosis starts in the same area as her PDA ligation surgery... they're not sure if that is a coincidence or if it means something.
5. Laurie's head circumference is large for her adjusted age/size. Her forehead also is larger than normal. Her eyes are not "set back" inside her head like normal, either. But then again, when did Laurie ever do anything normally?!

We stayed at Primary's for a while longer to get some x-rays of her neck and hips and for a CT scan. The x-rays turned out completely within normal limits, but her CT scan revealed some extra fluid in her brain. (Darn!) It could be nothing. But then again, it could be something. So next Friday Laurie will have a sedated MRI. We also had to make appointments with a neurosurgeon (so they can tell us about the MRI results), neurology, craniofacial clinic (for a possible head helmet), and genetics. Oh boy! Just when life gets comfortable... I guess that's how we keep life exciting, right?

All in all we are doing well! We've taken advantage of the nice weather earlier in the week to go on some great stroller rides. I can't wait until it heats up! Gotta love our lovely Logan winters...

March is here!

We are so happy that Spring is just around the corner! Our family is suffering from cabin fever and we can't wait to be able to go outside and get out of the house.

Laurie now weighs 11 lbs. 11 oz! Her growth is actually not very good, all things considered and Dr. McKenna doesn't think she's getting enough milk during the day. We're giving her a stool softener with the hope that it will help clear out her system and increase her appetite. She's also been having pretty bad reflux lately so we got some medication to hopefully help with that. Laurie's torticollis has gotten much worse in the last couple of weeks. We're going to visit a specialist at Primary's to hopefully get her on her way to having a strong, flexible neck! She is five months adjusted age, but her neck strength is about at a 2 month old level. We've been giving her TONS of tummy time, but she still won't pick her head up on her own. Silly girl.

Here are some pictures I thought you would enjoy...



Haili and Laurie with my sister, Marian.


Sticker mom! Haili had a little too much fun decorating me with stickers....

Cute Laurie with her favorite toy.

Pray for Gracie

One of our sweet heart friends is going through an extremely difficult time right now. Her name is Gracie and she recently received a new heart. However, things are not going as planned and Gracie, her family, and the doctors are in need of prayers. Her blog is: thegledhillfamily.blogspot.com. Please remember them and pray for sweet Gracie!

Happy faces

Laurie went to the ENT doctor last week and her left ear canal is still not fully developed. She also has fluid in that ear - but no sign of an ear infection yet. We are still just going to wait until June to decide if she needs to get tubes put in. She has yet to pass her hearing test in the left ear. We'll see what happens this summer...

I was feeling a bit rebellious (extended seclusion will do that to you!) and took Haili on a Mommy, daughter outing on Saturday. I met one of my heart mom friends at McDonald's and Haili loved eating her happy meal and ice cream cone. Then after nap time, I took her to the Tip Toe Through Asia dinner on campus. It was so much fun! Haili's favorite part were the Taiko Drummers from the Ogden Buddist Temple. They were amazing.

Here are some cute pictures that I took of the girls today. They are so funny when they play together. I can't wait until Laurie is a little bit older... I hope they'll get along and have fun with each other.

This picture was taken a couple weeks ago. We stopped by to visit one of Laurie's nurses, Sue. Laurie is about twice as big as she was when Sue last saw her!

Guess who?

Oxygen Free!

Big news! Laurie came off her oxygen today! It caught me by complete surprise. I took her to her pediatrician today and asked if it would be OK for me to take her off of her monitor during the day. It's just been so hard to have her tethered to a cord. He asked how her saturation levels were and how she did off of oxygen at home for small periods of time. Since she was only on 1/32 of a liter of oxygen, he took her off for 20 minutes at his office to see how she did. Her levels stayed at in the high 90s the entire time. So off came her oxygen for good! She already seems happier and she took a 2 hour nap when we got home. She's either been intubated or had a nasal canula for 7 1/2 months! We're excited for her to be done. I could hardly put her down all day - it was so much fun to just walk around the house and hold her! Going to doctor visits won't be nearly as much work now that I don't have to take her oxygen tank and monitor in addition to all the normal baby stuff! Wahoo!

A Promise is a Promise!

OK, so I promised one of my bed rest buddies that I would post an update today... so here it is! I have been absolutely horrible at posting since we got home from the hospital back in September. However, I do have some good reasons:

1. I made a goal to write in my journal everyday - which I have been doing... that's 25 days in a row now! It may be hard to believe, but from the time I was 13 years old until I was 21, I think I only missed maybe 5 or 6 days total in my stellar journal keeping. Then I went on my mission, got married, had children... when all the really important things started happening, I have had a harder time keeping up. But now I hope to be back on track!

2. Kevin and I are losing weight! We are REALLY doing it this time. I'm not going to tell you how much we've lost so far because I want to save it for when we reach our target weight... but I think many of you will be shocked! It takes A LOT more time to cook when you're trying to eat right. So I spend a lot of time in the kitchen, but I don't mind it because we really feel great and we're saving money by not buying junk food or going out to eat. I've also been getting to bed around 9 or 9:30 so that I can have the energy to go work out at 6 am at the gym.

3. Haili has started school! Well, OK, so it's actually home school and I'm the teacher. She's only 2 years old and since we're home bound until the Spring, we had to figure out something to do so we both didn't go crazy! We have school everyday and Haili absolutely loves it. Her favorite school activities are: reading books, painting, puzzles, writing (she can draw the letter "O" all by herself!), drawing, acting, singing time, and orchestra! Her orchestra class consists of her sitting on my lap as we "play" the cello. She loves it.

As I haven't updated this blog for quite some time, here are some of our fun January pictures. Enjoy!

Haili loves to hold baby Laurie! She asks to hold her at least 5 -6 times per day.

Sweet Little Laurie!

This is Haili's standard princess outfit... she loves anything fluffly and frilly!

Laurie just learned how to roll over onto her side! She also has figured out how to push herself off of her play mat. She's going to be a handful when she starts to crawl!