The Progress We've Waited For!

Hi everyone!

First of all, I just wanted to say how thankful I am for all of you. Matt and I have a lot of "pinch me" moments when we think of all of you and how you have prayed for our family so diligently. There have definitely been days where we have felt like didn't have any words to pray and you all have interceded for us, so thank you!

Since the last post, Ella has really started to show us her little personality. It has been such a HUGE JOY for us to witness. She is so much more interactive and it has been the progress that we have hoped for, for so long. As I'm typing this, she is kicking her feet, grabbing her toes (with her left hand only at this point), smiling at her daddy, checking on the football game that's on TV to make sure Matt's team is winning, and waving her hand around. (see video below!!) She is seriously obsessed with Matt. It's so cute, she's definitely a daddy's girl!!! She has even been turning onto her side, trying to roll over! This kind of freaks me out because if she does roll over, her arms aren't quite strong enough to hold her up so the trach would jab her in the throat if she rolled all the way onto her tummy. But I guess if it happens we will learn how to help her build the strength so it's not so uncomfortable! It's pretty exciting watching her gain all of these new "tricks".

We have had a cardiologist appointment and a GI appointment. The cardiologist appointment went really well and Ella was just smiling away at Dr. Hill. This was his first time seeing her so smiley and playing with her toys (or paper on the table) and I think he was stoked to see her so happy and acting more like a little girl! It had been a month since we last saw Dr. Hill and a lot of social/physical development has occurred since then, before she would just lay on the table and look around. This time she wouldn't stop kicking around, playing, and smiling. It was so cute seeing her interact with him. There wasn't much to say at that appointment other than it seemed like her liver has gotten less swollen and we don't need to do echocardiograms each time now! These are great things! She is getting stronger and more stable! Yippee!

At the GI appointment, we switched her back to a different kind of formula that she seemed to tolerate a little more and came up with a plan if she continues to throw up. Well, the weekend passed and she continued to throw up 2-4 times each day. So we now have an appointment to go get a Barium swallow x-ray done this Wednesday (Jan. 23rd) in Sacramento. This will let us know if there is some sort of issue in her digestive tract that is making her vomit. We've noticed that there have been a couple of yellow colored vomits which I am praying is not bile. We shall see! We are also going to be giving her Pepsid in hopes to help with the acidity in her tummy. I am praying for answers from this x-ray!

On a different note, going back to work has been good but has brought about it's own challenges. I don't have the time after school like I am used to, to get stuff done because I need to get home to relieve the nurse by 4pm. I used to work past 5 or 6 every work night so I didn't have to bring home any grading, but I'm not able to do that so my backpack is full of papers to do at home now! I have tried to combat this by going into work early in the morning but have found I am exhausted at night and have fallen asleep on the couch a couple of times! Thursday night I fell asleep around 8 and didn't even have enough energy to do Ella's trach change so we were delayed a day in that! Matt has been amazing through it all though and has picked up so much of the slack. Like I've said before, he is inredible. He is such a selfless dad. I am one blessed girl!

Off to do Ella's trach ties now while Eli naps! Happy Sunday everyone!

Love,
Jillian

PS. Ella is up to about 6-8 hours per day of sprinting off the vent! Please pray for this to pick up speed so we can get rid of the VENT!