HLHS

Day 27 of 30 Days of Gratitude: I am grateful for Early Intervention

Isabelle’s condition qualifies her for things that tend to give me mixed feelings. She could qualify for Make-A-Wish, has qualified for an Icing Smiles cake, and Medicaid help. She also qualified for Early Intervention services through the Kennedy-Donovan center. From the day we brought her home from the hospital we knew she was showing a slight developmental delay. Honestly, It would upset me when we would take her to well-baby check ups and see how much she wasn’t doing. Yes, she had been through an major surgery that reconstructed her circulatory system, but shouldn’t she be sitting up? Taking a bottle? Smiling? Writing her next thesis on the impact of socialism on today’s government?

After the initial meetings, we set up a plan and in comes Denise. Denise is amazing. She sings songs, gets her attention and keeps it! She shows me the positive in every situation, every play scenerio. “See how she is reaching? We want to see that. She wants to sit up.” I would sigh a sigh of relief when she would leave because I knew that with each visit I would be told exactly how much she would be catching up.

Isabelle went from laying relatively still to slowly rolling over. Then she began to sit. Then she started to make the movement towards pulling herself up to furniture. She began to crawl after numerous visits of Denise singing “Rock, rock, rock…hands and knees, hands and knees…”. After a visit with the cardio-neuro team and the feeding specialists, we decided an occupational therapist was needed. And so we met Gail.

Gail would come on a day that Denise wasn’t there, but a few times they overlapped. Gail came with some great toys and introduced the idea of preparing Izzie mentally to eat. She gave me a special brush to prepare her gums and some exercises to get her jaws ready. Izzie went along with it, and enjoyed playing with the brush. Gail showed me how to feed her properly and wait for her cues, which I would have completely missed. She had awesome toys and Izzie seemed to enjoy fine-tuning her motor skills on them. Gail had great handouts and always had additional information that was very helpful. Izzie still loves her food and is successfully feeding herself. It’s awesome.

She also walked by the time she was a year old. I didn’t expect her to take off the way she has, but at 15 months, she is practically running around the house. Denise showed us how to fight the hypotonia with certain exercises and paved the way for this active little girl who loves being with her sister. 

Having Early Intervention services have been a blessing to our family. No one ever wants them, but if you can have them, it’s a great service to have. It has encouraged me on days when I feel like she will never catch up. It has validated some of my concerns and offered solutions to them. At our last cardio-neuro appointment, the psychologist remarked on how social Izzie is, her appropriate responses, and how great her gross motor skills were. It made me feel better about her future and how can you not be grateful for that???

 

HLHS

Day 26 of 30 Days of Gratitude: I am grateful I can be available for my family

Monday started out as a typical day in our house. After getting the girls ready, Chris brought them over to daycare while I got ready for my day. I thought it would be nice to visit a fellow HLHS mom whose son recently had his first surgery at Children’s. As I stepped out of the shower the phone rang. Wrapping a towel around me I hopped over to the phone trying not to slip on the tile. It was the daycare. Addie just threw up all over the table. Awesome. Let me get dressed, I’ll come over to get her.

Texted my friend and apologized for not being able to visit but am glad I wasn’t bringing any germs into the CICU environment. At first Addie didn’t want to leave but after some coaxing she was convinced to put her coat on and come home. We had popsicles, some juice boxes and spent a lot of time running to the bathroom. It could have been worse. 

At 2:30 Liz came home and we went to our hair appointment that I promised to make for her to color her hair. It was nice spending time with her since we don’t get the opportunity to do so that often. I got to hear about her english teacher getting let go and how weird the whole situation was. We both left happy with our red tints and I was happy that we were able to go. Chris was home by the time we got there and the temp Addie was starting to get decided to go away for the night.

I’m grateful I was able to take care of Addie, cuddle with her on the couch and give her popsicles when she needed them. In the past, I wouldn’t have been able to be there for my girls when the got sick. I would need someone else to come in and be the person by the bedside until I got home. This day was different, and I was happy that it was just the two of us for most of the day. Addie doesn’t get the chance to have one of us all to herself for very long so I was happy to be there.