November 4th, 2013 | Written by Jo
We went to the doctors today to get a quick shot and it was the first time Clara could play with the toys and interact with the other kids there. She made two friends, girls who were just a few months older than her. Clara was in heaven. Then we ran into one of the Mom’s at the scale and I saw her very surprised face as Clara’s scars and button were out in full view. It was funny and I was proud. Proud of how normal Clara is that you wouldn’t have guessed!
When we got back from Clara’s last surgery, My Mom had moved in with us so that I could go back to work. My soul had no peace with this decision, which was made with my rational brain. I was confronted with the thing that I have swallowed and tried to put down.
Clara’s heart scares me. I feel like I live in the unknown and the worst part is, this fear is reasonable. I will get years or decades with this girl, either way I don’t want to miss anything.
Working make me realize my actions didn’t match my values. Turns out I care more about my family than I care about financial security. So I resigned. Money is tight, but I’m full time, loving on our girl, soaking in every baby minute I can get out of her and REJOICING in every growth. I’ll eventually go back to work, but this is where the Lord has placed me in this season.
After I resigned, my Mom went home to catch up on her life. I was so sad to see her leave. I am so thankful for the time Clara got to fall in love with her amazing grammy.
Right now, the Portnoys are home and living life as normal as possible. Our time is filled with family visits, adventures, new discoveries and a lot of Joy! We have been so busy!!
Clara’s diagnosis is full on HLHS, but all the efforts to avoid this diagnosis have made her a “Really Strong” HLHS kid! She gets a little bit of pumping power from her left ventricle, which is like having a back up generator. All her valves and plumbing are looking great.
Here are some amazing things we have seen as answered prayers:
Clara at 10 months, caught up on her motor skills! She started weekly Physical Therapy at 3 months old, and this curious studier-of-all-things-new girl, has let us push her until … last week she started crawling. Crawling I said, at 10 months!!! I cried. She even started pulling herself up and walking herself along furniture. I’m forever thankful to Stephanie, our PT, who gave us these skills and who at 10 months told me she hit every milestone!!
Clara at 10 months may eat normal formula and baby food. Thank the Lord for his faithfulness to our family. Clara for the last 4 months has been on a fat free diet because her bodies’ response to fats, was to create pools of fluid on her lungs. We are back on fats this week! We are not all the way on the voluntary eating yet, but we have come from complete oral aversion.
Clara has had precious time with family who doesn’t live in DC. We took an adventure to Lynchburg where: cousin Chloe was gentile and attentive and filled my heart with her tenderness, cousin Bennett couldn’t contain his high pitch cute oogles and insistence to sit next to Clara for dinner, and little Rhett, Uncle Ryan and Aunt Kelly showed Clara how to do a Portnoy dance Party. Grammy poured her love over Clara day in and out for months! Aunt Jill came to confuse Clara, who thought she was Aunt Jennifer. Even Aunt Maureen came to play and shower our sweet girl in Love!
Clara took on a cold and nothing really came of it. I was warned it could mean hospital admittance. Guess what it was like for her? Like it is for any baby with a cold! That is rad.
We are planning to go visit CO this week to see more family and to test out the altitude on her little ticker. Pray for her to hold up like a champ, like she has in every other way! Our family has a goal of moving to CO to be closer to family and to get out of the hood.