Liza is Full of Surprises

1 year stats

weight: 22lb 7oz  (81st percentile)

height: 32 inches (99th percentile)

head: 47cm (92nd percentile)

 

 

Clothes: 12-18 months
 

Diaper: size 4 since she was like 5 months old =)
 

Favorite food: spaghetti, banana, watermelon

Teeth: 2 bottom finally at 10 months old
 

Words: Hush Daisy (this was also one of her sisters first), hot, uh-oh (how fitting), horsie, bye, and Joey says she says da da =) She also says "ahhhh" everytime she takes a sip of water or watches you take one (learned from pawpaw). As soon a pour my coffee in the morning she says Ahhhhh!
 

Favorite game: throwing ball, patty cake, itsy bitsy spider
 

Interests: fussing at Daisy, watching any dog or cat, pulling up on anything she can get her hands on, snacking, checking the mail so she can wave bye bye to the mailbox. Until about 2 weeks ago she enjoyed strolling but she would much rather be on the ground squirming these days

 

 

And here in the latest update in general...

 

 

We are now pulling up for the past month or so. She has cruised a couple times, but not real comfortable yet. Her favorite mode of transportation is the army crawl, but lately she is using the traditional crawl more but it is slower. She was referred to OT/PT around 9 months old due to gross motor and fine motor delays. However, she was released from OT about 3 weeks ago, and we are only going to PT once a month! Woo Hoo!

 

We had an excellent visit with her neurologist last week. After reviewing her latest MRI, he concludes that most of her delays will be in motor development, more specifically fine motor skills such as writing, buttoning, zippers, using utensils, ect. He doesn't expect any problems with her cognition or speech. I cannot even put into words how this made us feel! I knew she just kinda seemed "with it", but hearing it from the guy who had prepared us for such scary things was just too much. We are ecstatic! He says he has no doubts that she will walk, it just may take a little longer. He explained that her brain has put what she has learned into a different part of her brain that was not damaged. Isn't this amazing? Only babies can come back from something like this, and I think that is pretty cool. He told us that this time last year he did not think she would live, and he just loves when he is wrong =)  The only advice he has was to keep up with therapy, and come back in a year. Wow!

For my medical friends that like to get technical... here is the details. We had such wonderful doctors at Batson and I could sing their praises all day long! These guys are top notch and spent so much time with us! There is still a question whether the bleed originated from the choroid plexus or the thalamus. The neurosurgeon says it came from the CP, and both of her thalamus are working. The neurologist says it came from the thalamus, and that only one thamali is working (hence his nickname for her "The One Thalami Diva"). It is neither here nor there, because she is doing so awesome. It sounds awful though. They have put her in the "interesting imaging" file they say =) So at the time she was sick, the bleed originated from the thalamus/choroid plexus, filled the ventricles (she had a stage 4 intraventricular hemorrhage), and she even had a slight midline shift and mild herniation. My nurse friends know how terrible this sounds. If this were an adult, they would not have made it out of the hospital. One thing they agree on is it was probably an immature vessel that did not form correctly, but there is no way to prove that.  I cannot tell you how many times we have heard "she sounds so bad on paper, but looks so good in person'!

What a year this has been. A part of me feels as I wished it away because I was so anxious for her to hit milestones that it was hard to simply appreciate the baby phase. The first smile I cried. I was relieved to know she could show emotion. Then she laughed ! I thought "well she is even appropriate with her laugh"! She batted at her toys and I videoed to send to all my family and cried. She rolled over and I cried. Joey and I laid in bed on many nights reading case studies on babies with stroke and there was no good news knowing what we knew then. Not to mention that there is almost zero information on term babies having a stroke. It is very common in preemies, but that involves a different part of the brain so it is really whole separate kettle of fish. . We cried and held each other and prayed. I left doctors appointments with both happy tears at times and discouraged tears at times. It was tough. But those days are over. Some of my questions have been answered which makes it all easier. The fear of the unknown has been the worst part. I know we will have some obstacles and frustrations, but she is nothing like what I was prepared for. She is a bright, happy, hilarious, and smart 1 year old and in the words of her neurosurgeon... It is time to go enjoy my baby =)

Thank you for everyone who has prayed for us. It has been humbling and my saving grace.