Thursday, March 6, 2014

Evie 9 Months!

At 9 months Evie weighs 22 lbs 5 oz and is 29 inches long! She is in the 90th percentile for weight and off the charts in height. She hasn't gained weight since she was 5 months old but our doctor isn't concerned because at this point she is just getting back on the curve instead of being off of it :)

Evie is still eating 6oz bottles and food for breakfast, lunch and dinner. We have graduated to puffs finally and she is tolerating them well! She even had a french fry the other night and was able to eat that without choking!!

We had a bit of a scare starting on February 9th when Evie seemed to have had a small virus but it has really knocked her on her tail and we are still watching to see if there could maybe be something else going on. Since Feb. 9th Evie has progressively refused to sit up, crying out when we force her to, has a bobble head that she can't seem to get control of and has just been overall regressing in physical therapy. After a trip to the ER that included CT scan and head x-rays we determined her shunt was working great, huge relief! Then the next week we got an x-ray of her tummy which showed she was backed up (common for SB babies). We got her cleared out but she was still having some lingering effects. At a physical therapy session our therapist was really worried about the regression and Evie's apparent pain from stretches so she called our SB specialists at Cardinal Glennon and we had an appointment with Orthopedic Surgery. That appointment was less than successful and they told us she was fine. We are still seeing some issues with Evie but over the past week she has been starting to get back to where she was. We still aren't there yet, so essentially we have lost about a month in progress with physical therapy which makes me sad but just as long as she's getting better, that's all that matters.

Evie got fitted with her very first pair of AFOs (ankle foot orthotics)! With the AFOs Evie is able to bear all of her weight and even stand in her stander for 30 minutes at a time! She loves to be upright and stand next to a shelf and play!
Evie getting molded for her braces!
It took us 4 stores but we finally found a tennis shoe that was light weight and laced all the way down but was small enough for her feet! Aren't they cute?

And of course a princess needs her orthotics blinged out! White was so boring!

Check her out!!


Today Evie has her swallow study to see if we can figure out what is going on once she swallows the food. There is a possibility that she is still refluxing which could be a cause of her constant illness. I am hoping this gives us a better insight as to what could be the root of some of the issues we are dealing with. Sometimes being a mom to a child with Spina Bifida is hard! You have to decipher what is spina bifida related and what is just her being a normal baby...we are still trying to navigate that and figure her out.

Evie loves to babble all day long. She can say "ma-ma" "da-da" "ba-ba" and has recently started blowing raspberries which is so cute! She loves to laugh at her brother and has recently started getting on his nerves :) She likes to have whatever he has and let's just say we are learning some wonderful lessons in sharing at the Morgan house :)

Evie can scoot backwards and sit up nice and tall and play with toys! She is trying so hard to figure out  how to crawl forward and brings her legs up but then can't figure it out. She is so darn cute and determined! Evie trying to crawl HERE

She wears 12 month size clothes and size 4 diapers. She loves her jewelry and diamonds are her favorite. We are so blessed to be her parents and look forward to all she will accomplish. 

Thursday, February 27, 2014

Valentine's Day 2014

Obviously I am a little behind with publishing my posts - it's hard keeping up with 2 kiddos and all of Evie's appointments!

Valentine's Day this year was so much fun with the kids. We stayed pretty low key and they each got a card and a few little gifts. Gavin loved his cookie from grandma and grandpa Morgan and has stickers all over our house (he calls them "dougie stickers" because they are dog stickers and one of them is a pug like my parent's pug, Doug) from grandma Jenna and grandpa Wayne. 

They both looked adorable in their outfits and Gavin had so much fun decorating his first ever Valentine's Day box at school. 

Here are a few pics from the day. 

Man of your dreams

Sweet kisses for 'sis'

Here is Gavin's very first box. He's pretty good at this decorating thing. His shirt says "Sorry ladies, mom says I can't date yet"

Gavin loved his Valentines for his friends. He walked around all day saying "I dig you!"

Dinner at Taco Bell with my loves - it was Gavin's choice and he wanted tacos :)

Evie Grace at 8 months

At 8 months Evie weighs 22 lb 7.5 oz and is about 28 inches long. Most of her habits are the same - still sleeping great and eats about the same. She really likes food and the new flavors but we started noticing her gagging and sometimes even puking when we would give her a puff. We talked it over with our PT and had a meeting with our First Steps coordinator and it was decided that Evie would be evaluated by an Occupational Therapist. 

We had our first meeting with our OT about 2 weeks ago and some of Evie's tendencies threw up red flags for her. The constant tongue out of the mouth, the laryngomalacia, the reflux...all of that is actually related and a sign that Evie probably still has some reflux going on even though she isn't puking on us anymore. We are working on new exercises before feedings and are going to try to get Evie scheduled for a swallow study to rule out the possibility of aspiration (this because Evie has been constantly sick for almost her entire life). 

Physical therapy continues to be wonderful. Evie is a strong and determined little thing and we love seeing her progress. Our PT is so excited with all the great improvements Evie is making with bearing weight and keeping her feet straight. The possibility of a stander is becoming more slim as Evie continues to progress in the right direction.  Next week we get Evie fitted for AFOs. I am so excited about this! Once her AFOs are molded and come in we will be able to see just how much intervention is needed. It is possible that the AFOs will fix a few minor problems we are having like keeping the hips in (they are kind of loosy goosy right now) and bearing weight. It will be a good indicator of how she responds to intervention and be our first insight as to how she reacts with a little extra help! I know I say it in just about every post but we are sooo grateful for a therapist that loves her so much and is such a great advocate for Evie. She is one step ahead and thinks of anything and everything that will help Evie have the most mobility possible with the least amount of intervention.

OH! And SHE HAS A TOOTH!! On the morning of January 6th Evie popped her very first tooth!! 

Other than being plagued with a constant sickness, be it a UTI, ear infection, cold or pneumonia, Evie is doing great overall. She continues to be the light of our life. She thinks Gavin is just the funniest thing ever and laughs at even the smallest thing he does. This does cause us a few hair-pulling nights because Gavin will continually act out because he knows his sister will laugh at his antics.