The hole in Arielle's heart has not changed, however one of the valves is showing signs of stress-- (there is now some leakage from there, also.)
They said is is very important that she gain weight, (she's 21-1/2 lbs.; she's so tiny, she's off the chart, compared to other kids her age), and that we need to let her eat anything she wants, just to gain weight. Even if it's chocolate cake; let her eat as much as she wants, because if she can gain weight, it will help her body to close the hole. He again said that we need to keep a close watch on any signs of difficulty breathing or her skin turning grey. If the hole isn't getting smaller by her next visit (which will be in 4 months instead of the usual 6 months), they will start planning surgery. The doctor is still amazed that she is as active as she is with no signs of trouble! So of course, we were hoping she was getting better. Amanda and Ed's insurance isn't very good; her doctor visits are about $150 a visit, so I can't imagine what the surgery will cost, which is a stress they don't need on top of worrying about how she will physically deal with the procedure. We just don't want her to have to go through it!
So, anyone who reads this, please remember to keep Arielle in your prayers. She needs all the support she can get! Thank you! Kim
Arielle singing with "High School Musical" sing-along mic
This video is 1 min 22 sec, and she actually starts tying to sing about half way through it. The first part, she's too busy trying to be a diva! (Gotta nip that bud right now!) But please watch till the end to see the sweet side of her!
Ok, holiday madness over, so I have some time to update now!
Arielle is almost 21 months old now. She had an appointment with her cardiologist for another sonogram on December 18, and the size of the hole has not changed. As for her weight, she is now in the 25th percentile, up from 5th percentile the last time. Of course, that is still very much at the small end of the scale, but at least she's gaining weight! The doctor said there is no change in the size of the hole, and once again, says it is remarkable that she is showing absolutely no symptoms, and that there is no sign of damage to her lungs or the rest of her heart. With the hole in such an unusual place, (so close to the valve), we need to still keep a careful watch, because she could always start to show symptoms at any time, which could mean immediate surgery. They said if she continues to gain weight, it could increase the heart mass, which could help the hole to heal.
She's starting to talk more, and although there's only a few of us who speak "Arielle", it's becoming more clear every day. She sings the "Arielle" song, and the "Night-night" song, every night when she is getting into bed, which is really sweet. After we say prayers, she says, very loudly, "Amen!" She is actually very good about going to bed. (What a relief!) Since October, we've had 6 birthdays, so she kinda learned to sing Happy Birthday, and walks around singing "Happy to you, happy to you..."
Now at Christmas, she and Mina were both very sick with some type of virus and were pretty lathargic. (Not the least bit interested in opening gifts.) They only wanted to be held. She ended up with a bad case of diaper rash, and that night after I gave her a bath, I put on some diaper rash ointment that Amanda sells (works very quick and goes on easily, and obviously relieves the burning, because as I was fastening her diaper, she smiled real big and patted her diaper and said, "Oh, tank you, Nana! Mmmmm-wah!" and blew me a kiss. That would have been a great commercial! LOL
She is very affectionate and loving of the other kids in the house. If any of them are upset or especially if they are crying, she goes to comfort them, hugging them and giving them a big "mmmm-wah" kiss. But at the same time, if they are bugging her, she's not so shy that she won't put her hand on their face, push them away and say "Stop it!"
She's such a blessing in our lives. I'm really appreciating the innocence and hoping we can hang on to this a little longer, but I know the terrible two's are right around the corner! EEEK!!
Anyway, here is a short video of Thanksgiving. At the end, she sings the Arielle song (right after Mina sings her song, which is a little too energetic for bedtime, but...)
Arielle had her first appointment with the new cardiologist on June 27th, and things are going very well. She's still not having any symptoms that would show she's getting blood pumped into her lungs, which of course is good news. There was possibly exciting news, that the hole in her heart is smaller than the last time. (The last doctor said the hole was between 3.5 and 4.5 mm, and now this doctor says it's between 2.5 and 3.5.) So either it is getting smaller, or just a difference of opinion between the two doctors. Hopefully it is getting smaller and she won't have to have the surgery by the time she's 2 or 3. Thanks for your prayers, everyone!
Moving, 1st birthday and an appointment with a new pediatrician
We moved to Atlanta at the end of February, so things have been busy. Here are a few of the kids. Jaelin with Arielle, and Mina standing outside the door ringing the doorbell. ;),
and another of the 3 sisters sitting on the steps.
(Can you tell they're related?)
Arielle turned one year old on April 25, and unfortunately, the video I took of us singing happy birthday didn't come out!
But I do have a couple of pics, including one with some of our family who live nearby that came to her party.
At her doctor's appointment, they said she is really small, (in spite of the fact that she can eat as much as the older kids at lunch and dinner! Why can't it work that way for me?) She weighs 16 lbs. and is 28 1/2" tall. She's just starting to outgrow her 9 month old clothing! And at around 13 months, she is just starting to walk, so seeing such a tiny person walking around is almost surprising, except that she's 13 months old! She is still waiting for an appointment with a new pediatric cardiologist, so there is still no new news as to how her heart is progressing. But she isn't showing any signs of any difficulties. Hopefully it will stay that way.
Here is a video of her playing with a musical toy. She goes nuts when she hears music! It's funny. Hope you enjoy the video.