Reagan had made many strides in her development prior to this last surgery and as with every surgery we have been playing catch up to get back to our pre-surgery status. Just recently, Reagan has begun "walking" again. When I say "walking" she does it on her own and for short distances throughout the house. We still have her walker in which she relies on sometimes.
Taking a stroll to visit our neighbor, Ms. Pat
Reagan is at a point where she needs to build her muscles as well as endurance. She is capable of doing things other children her age do just can't do them as quickly or with as much energy so alot of time and patience is required on my part. Although she gets physical therapy twice a week, her therapist and I were talking today about how Reagan seems to be bored with her physical therapy sessions. She wants to be doing normal toddler things in a normal environment so we've recently added in swim lessons to her weekly routine. As I told the swim teacher, I'm not necessarily paying for her to learn to swim, per say, as much as just doing something she likes and that will build her muscles all at the same time.
Practicing her kicks with Miss Brittany
In addition to swim lessons, we checked out a local gym for gymnastics classes. Reagan will begin a Mom & Me Toddler 2/3 gymnastics class in August. This will be once a week with mom. Originally, it was my intent to send her to Mother's Day Out this fall two days a week. However, I took her one day this summer and was reminded just how far behind her peers she is physically. I couldn't bare to go off and leave her sitting there like a helpless puppy. When the teacher called for the kids to line up to go outside, there Reagan sat while all the kids promptly jumped up and ran to the door. Needless to say, I helped her to the door and we eventually made it out to the playground along with the other kids. As I said earlier, alot of time and patience is required but as long as she is trying I am willing to allow her to do things on her own. After all, it's not as though she is not capable and needs to be in a wheelchair, however, she can't keep up with a room full of toddlers either without alot of help. So I've decided to take a rain check on the Mother's Day Out program and do activities with her to help build her muscles through the swimming and gymnastics. It wouldn't be much of a "Mother's Day Out" for me if I was worried about her the whole time. This way, I can be with her still and get her a little more help in the area of physical development.
Also, in terms of physical development, Reagan's physical therapist along with others in the area recently started a local AMBUCS chapter. AMBUCS provides special trikes/bikes to special needs kids. This Saturday, Reagan will be receiving her very own trike designed to meet her special needs. I look forward to bike rides with the kids this fall when it's cooler in which Reagan can actually ride this time instead of being pushed in a stroller and again building her muscles as she goes.
In terms of her speech, she is saying everything. Everyone may not be able to understand her as mom has to guess sometimes but she says things on her own now without us having to prompt her to say everything. In fact, it often sounds as if she's handing out orders and ruling the roost. "Sit mama", "eat bubba", "outside swing high". So thankful to hear that little voice after having a breathing tube forced down it so many times and worrying about vocal cord damage- Praise God for those "orders" she hands out!
And lastly, eating....we are back to full force.
Eating pizza (her favorite) while visiting MiMi & PawPaw
She eats round the clock- probably more like we all should eat (little portions all day long) but tends to keep mama on her feet. Seems like I wash those little hands and mouth and high chair tray 10 times a day but again, thankful to not be on continuous g-tube feeds anymore. In fact, she only gets fed through her g-tube at night for supplemental nutrition and during her naps. I am trying to explore either a higher caloric formula or something to add to her current formula to help her gain weight. We still have not gotten back to her 24 lbs. she was prior to surgery. If any of you other heart moms have suggestions, please let me know. Seems like she has been wearing the same bottoms (shorts/pants/skirts) for 2 years now. Can't seem to hold anything up around her waist bigger than 18 months....it all falls to the ground...hence the song "Pants on the Ground" from American Idol--ha!
Anyway, I have a little helper as I'm typing this update so it's taking me a little longer than anticipated to complete so thought I'd share a photo of a recent activity she enjoyed helping with......
Photo of us taken with the webcam while we were instant messaging with daddy on the computer.
Since my "helper" is trying to help a little too much, I 'll think I'll sign out for now. We head to Austin in the morning for an appt. with the cardiologist so better start getting ready for bed.
