Posted (Tina) in All Posts on April-21-2013

I know many of you used to wonder how in the world that I had time to blog about Ella, much less every day for two years. But I think that having a full time job that is crazy plus a newborn pretty much halted the blogging altogether for a stretch. But I’m sad because so many great things have happened with Ella and you’ve missed them because I did not take the time to write.

One of the best things is the addition of her baby brother. I cannot tell you what a shock and surprise it is to see her with him. At first, she wasn’t too sure because she had never been around a newborn. You could tell that there was this look with wonder as if she were saying, “Mom, what is that thing?” She doesn’t spend much time in public, so I honestly think she was unsure what this thing was that was so small and made so much noise. But as time progressed and her brother was in the house 24/7 with her, and we kept telling her that this was her brother with big smiles, she started to like the idea. It only took about 2-3 weeks for this realization to set in.

Now many of you have never met Ella in person and those that have met her, may not have had the privilege of getting a hug. Ella is strong and when she likes you and wants to hug you, be prepared. She doesn’t just put her arms around your neck and push her cheek into yours, she pushes her entire body into you, as if she is trying to crawl inside you!

You can imagine then, just how endearing, when we saw Ella trying to give her brother a hug. She likes him so much that we have to make sure she doesn’t hurt him. And Isaiah loves it – he thinks his sister is awesome. He’s always tracking her and smiling. Now we know that eventually these two will fight just like healthy siblings do, but we thought Ella would be more jealous and not like her brother. It’s very surprising to see her response and such a blessing.

Some other highlights for Ella:

-She’s been staying healthy! No overnight hospital stays!

-Grandma Eusey has played a huge part in helping Ella move forward. Since they hang out together during the day, Grandma Eusey is always teaching Ella and asking her to help her with things: putting things away, sticking clothes in the washer, opening and closing doors, brushing her hair, etc. By playing and making things fun along with her developmental stage, Ella is interested in exploring lots of things.

-Developmentally, Ella seems like she is around two years old. She’s starting to do things that other two year olds do, including the temper tantrums! Terrible twos have arrived.

-Ella’s receptive language has increased. We feel like she is understanding more and more of our verbal communication to her. When we repeat things to her verbally, day after day, it seems like she is picking it up faster than before.

-Ella has started to mimic. This is HUGE! From here, the possibilities are endless when it comes to communication – and we are so excited because we’ve tried everything for years and this is the first time we feel that we have had a break-thru.

Initially, about a year ago, she figured out that if she wanted more of something or liked something, she would clap her hands. And/or she would grab your hand and take it to show what she wanted. But now that she likes to mimic, it has opened up a new world.

It began about 8 months ago when she wanted us to play “Peek A Boo” with her. So she started taking her hand and covering her eyes and then moving her hand away from her eyes, as a sign that she wanted you to play this with her.

I am happy to report that this has now expanded. Her therapists like to use singing and nursery rhymes with Ella as a motivator. So the next favorite became Itsy-Bitsy spider. So we took the time to “sign” the Itsy-Bitsy Spider song. We found a free app on the iPad that would sing the song too – she would play it over and over and over again. Next thing you know, she was taking her hands to sign that she wanted us to sing the Itsy-Bitsy Spider song to her. That was awesome!

Grandma Eusey decided to incorporate the Baby Signing Time videos more into their day (Ella has been watching those since she was an infant). So one of the next signs was “hat”. Grandma would bring a hat or two with her and they would play. Ella can sign “hat” now. What else you ask? Eat and Wash Hands are there too. If you ask her, “Ella, do you want to eat?” She will make the sign for eat!!!

Now, we are working on “Mom” and “Dad”. It still takes lots and lots of repetition for her to get it, but we are so excited that we think she is beginning to understand the concept. This gives us so much hope that our daughter might some day be able to communicate her wants and needs more effectively.

-Yes, after 2+ years of daily use, Ella slammed her iPad on the floor and broke it. Sigh…Josh decided that he doesn’t use his that much and handed it over for Ella to use instead. Needless to say, we also upgraded the cover to the highest rated child proof one on the market!

-Ella’s favorite book is still Brown Bear by Eric Carlyle.
-With Grandma’s help, Ella is also learning how to draw with her erasable Crayola markers. She is making quite the art work. I think Ella’s birthday might need to include an easel.

-We purchased a tricycle for Ella over Christmas – she became obsessed with it. Her oxygen cord gets tangles all the time, so we have to out it away sometimes. She doesn’t know how to ride it solo, instead she like to push it around (and into the walls)! But the interest is there and she is working on it with her physical therapist.

-The physical therapist showed Ella and Grandma how to practice her getting in and out of her high chair. Grandma reinforced over and over – she got it down in about a week. Now you just tell Ella to go sit in her chair, and she does it solo!

-Grandma and Ella love to do her hair and put zillions of matching bows in her hairdo each day. But now it has become a “thing” to sit in front of the mirror and have her hair styled….and yes, she is still obsessed with shoes and loves to sit down and try each pair daily!

-Grandma and Ella like to do girly things. So one day, I noticed Dora underpanties over Ella’s diaper. She gets excited and thinks it’s very fun!

-Ella still loves her daily conversations with George.

-Ella’s biggest health challenge: gaining weight. Last time she weighed on March 15th, she was only 31 pounds but has definitely lengthened. Even her 3T pants on the tightest setting for the waist, were falling off of her (and they are too short). So our main mission is to increase her calories. Back in December when I was feeding Isaiah, I noticed that I was feeding Ella more often than Isaiah. Somehow, this didn’t seem right. So we worked to reduce her feeding sessions from 8 down to 7 times per day (during the waking hours, nothing overnight). But now each week, we try to increase her food just slightly. We are trying not to add feeding sessions. So far, we’ve had success. Over the past few months, we’ve been able to increase her blended food intake from 840ml to 1000ml, just this week. We just have to make the changes slowly and try to delicately push her body. We can tell that the slight increases are having an impact, but her pediatrician wants to see her gain 4-5 pounds and told us that besides keeping her healthy, that is or homework!

-We’ve regressed a bit as far as feeding orally. Her OT therapist is pregnant with a baby girl and had to go on modified bedrest so she cannot work! We won’t see her until September! And Ella will not let us feed her. Oh believe me, we still try. We’re hoping that watching her brother start to eat food will create new interest.

-Another piece of good news on the health front: we decided it was worth taking the risk to see if discontinuing aspirin and Plavix will work. These are blood thinners and Ella takes them to keep her three heart stints from occluding. Supposedly, the risk of occlusion is minimal now that they’ve been inside her body for a few years. So, we took an entire set of labs for the hematology to look at while she was taking both meds. Then, we discontinued taking them in early March and have been off of them. Now, we just went back for more labs yesterday to check the clotting properties of her blood. We’re hopeful that we can remain off of them and have no ill effects. (If you remember, she had her first stent placed and took aspirin daily but the stents occluded and she was back in the cath lab 6 months later, requiring 2 more stents). And unfortunately, by the time you realize that there is something wrong (too much pressure gradient on an echo), its too late. We are hoping that the blood work can give an indication and we can be proactive, if needed.

-It’s time for Ella’s recertification for her IEP. If you remember, we opted to keep hold her back in preschool again last year so she could continue to work with the same teacher – they love each other and work together so well. This year, she has to move into Kindergarden and her re-certification is up. When I asked her pediatrician about keeping Ella in a home setting versus attending school, he was bold in advising that we keep Ella home for another 2-3 years and away from all the germs from other kids in the school setting. She is staying healthy at home and what might seem like a small illness (like last year when she caught a virus from Josh), puts Ella in the hospital for days. He just feels that she needs to get stronger before we expose her to children daily. So I reached out to Ella’s advocate that we hired last time, so that she can attend the IEP and help us fight for Ella’s educational needs. Her IEP meeting is in mid-May.

-“Aunt Karen” comes to hang out nearly every weekend. The kids love on her and vice versa. It really does seem that she is part of the family. She is a God-send, giving us breaks from the kids and allowing us date nights.

-There was a CDH reunion in Gainesville, Florida yesterday that we were not able to attend. It would have been so fun to go and see some of the other families and see Dr. Kays. Sigh…maybe next time.

Josh got a new job recently – it’s been very busy but he’s loving his new gig. Also, we recently celebrated 18 years of marriage!

Finally, we’re trying to set up another family blog, to help this blog continue to feature Ella and her survivor milestones. Look for an update on our family blog coming soon, so you can catch up on TONS of photos and see how adorable Ella’s little brother has become!