So....it's been a while! :) So long, in fact, that Blogger has a whole new look and format behind the scenes that I'm having to get used to. Hmmmm.....guess that'll teach me to not stay away so long!
But in the meantime, Rebekah has been doing fantastic! She is growing, active, has been relatively healthy, and is so much fun. I'll try to hit the highlights of the last few weeks......
Future piano player?
Rebekah's last cardiac check-up was great! Her pulmonary hypertension is still under control (higher than "normal," but much lower than what it was before surgery). She continues to take Viagra three times a day and sleep with oxygen to keep that pressure down. Rebekah's heart function also looks really good; probably the best it has ever been in her life! The best news is that Rebekah is not going to be scheduled for a heart catheterization this summer like the doctors originally talked about! As Rebekah's cardiologist said, we don't need to do an invasive procedure to confirm good news. I'm thrilled about that!
Rebekah and Great Grammy (Hi, Grandma!!)
We are still struggling a bit with the sleeping issues, but I anticipate that we will have ups and downs in the sleep department for quite a while to come. Rebekah is currently taking Clonidine nightly to help regulate her sleep patterns. At one point, right before we began the Clonidine, Rebekah was waking up as many as 20 times in a night! And at least half of those times she would pull her oxygen off. :( We are trying to get her body used to the feel of sleeping through the night. I have to say that we are improving. Not perfect, but certainly improving! Rebekah sleeps through the night, on average 2 or 3 nights a week, and the remaining nights she wakes up probably less than 5 times.
Someone loves Fudge pops!
Since December (surgery), Rebekah has really grown considerably! I think she was trying to make up for a year's worth of growth in a few months! :) She is more than three inches taller and at least five pounds heavier than she was before surgery. Thankfully Rebekah has an older cousin who passes down clothes that she outgrows! :) For some reason, Rebekah actually went backwards in the last month and lost half a pound. I'm hoping that we can contribute that to the cold that Rebekah had and that we see her weight bounce back up this month.
Our little fish!
In the last few weeks we have also seen Rebekah make good progress in her strength and endurance. Rebekah has been working in the pool during her physical therapy time, and it has really paid off! Rebekah can run and play for much longer periods of time before she gets winded or tired. She is also doing really well at learning her limitation and knowing when she needs to take a break to rest. About the only thing that Rebekah is still not doing consistently is stairs. She still prefers someone to carry her up and down the stairs. I think it just takes a lot of energy for her to do that.
Sweet girl
Probably Rebekah's biggest challenge and obstacle right now is her speech. It's not something I think about a lot because I am with her all the time and usually can understand most of what she says. However, she is very difficult to understand in a quiet setting, and almost impossible to understand in a crowded environment. Recently Rebekah was evaluated with our local school system and they found her speech to be significantly delayed. As of now, Rebekah's left vocal cord is still paralyzed, which is contributing to her speech problems. She also has articulation and phonemic delays, meaning that more than half of her words are either missing the beginning or ending sounds. Her understanding of speech is excellent, though, so that is good news!
Rebekah continues to receive private speech therapy once a week. Tomorrow we will have an IEP meeting with the school system and we anticipate, based on their evaluation and reports, that she will be offered speech therapy in a group setting once or twice a week in a local preschool.
Silly girl
"The brothers" are all doing well and so happy that school is over for the summer! They all did very well in their school work this year and are looking forward to a fun summer of swimming, playing, and visiting grandparents. Friday begins our local library summer reading program, and they are already eager to get started.
Justin, Great Grammy, Rebekah, Zachary (back row),
Aaron and Caleb
Drew and I are also doing well. I must admit, I was just as eager for summer vacation as the boys! :) Teachers need a break also, right?! Drew has an interview sometime next week (not sure of the day yet), and we are praying that it goes well and he is able to start full-time work again.
And the littlest member of our family, formerly known as T6, is also doing well! HE is growing, kicking, squirming and all-around being a boy! :) We are so excited that Rebekah will have a little brother, and she frequently pats my tummy and says hi to the baby. At our 20 week ultrasound, everything looked completely normal - including the heart! We will be having at least one more ultrasound at 29 weeks when he is a little bigger, just to make sure that everything still looks good. I can't believe we will be meeting this little guy in about three months!
Rebekah "playing" piano.
She even has to have books on the music rack!
I'll hopefully get another update posted sooner than the last one. I'm thinking maybe things will get a little less hectic now that we are done with school, but that's probably wishful thinking, I'm sure. :)
Nancy
