Where this Blog started.......
Wednesday, September 29, 2010
Monday, September 27, 2010
Friday, September 24, 2010
Phew, what a week! We didn't have much of a weekend to start, considering I was up and out the door with Safa at 7am last Saturday. It was her first high school debate meet, at Vestavia High School. She was probably up against about 75 other students in her league and style of debate (L-D or Lincoln-Douglas). This is typically the largest novice tournament in the area. She loves being able to debate again, and seems to have a natural gift for public speaking. This time she was up against many students who have been competing in high school debate tournaments longer than her, and many have been to debate camp. The last time Safa was in a debate tournament was almost 2 years ago, in 7th grade, and that was a different league altogether at the middle school level.
So how did she do? We actually had to leave before the awards, but overall she won 2 of the 4 rounds she was in. Not too shabby for a first timer. Her coach and I met her as she was walking out of the last round. The judge had nothing but praise for both her and her opponent; he'd had a difficult time deciding who to award the win to, and he actually apologized to Safa when she didn't win! And when she went back to school on Monday morning we were thrilled to find out she placed 8th overall among all the students in L-D, based on total speaker points awarded. So with a great start in her first tournament she is pumped up about the next one, which is actually next Saturday.
So far the new school experience has been good for Safa. the one thing she's having a hard time with is French, but I'm sure once she gets a grasp of the verbs she'll do fine. Her debate coach is also her Geometry teacher. He gave her the ultimate compliment when I met him on the day of the debate tournament. He told me that she thinks with both sides of her brain. Made me feel so proud ☺
Monday night I didn't get home until after 9:00pm, since I stayed back for my once a month late day in clinic, and medical staff conference. Boring! And I missed the kids' bedtime, boohoo! Tuesday was a good day; did my usual errands with Bilal, but had to be at Safa's school for a mandatory parent meeting in the evening. Wednesday was grocery night, and we didn't get back until about 8. How about some down time on Thursday? Nope! I had volunteered to help in concessions at the middle school football games, so between 5pm and almost 9pm I was collecting money at the window while Hamza performed in the band. Recession? What recession? I must have collected a couple thousand dollars last night by selling hamburgers, hot dogs, pretzels, nachos, candy and drinks. Wow, I was exhausted when I got home. And, I missed another bed time with Bilal. Fortunately this morning clinic wasn't too crazy, so I was home by noon, and after that just had to get Safa from school. Now if only I could figure out why I am typing on my computer instead of asleep in bed! But at least there is not too much planned for this weekend, just dinner tomorrow night with friends and Sunday school the day after.
Monday the craziness will start back up, and then I need to try and clone myself for next weekend again. Zakir is driving Safa and a couple more students to Florence (I have no idea where that is, except that it's about a 2 hour drive) and back, for the next debate tournament, and I am on call, so have to go up to Oneonta to make rounds. That also happens to be the same day as the Open House at ASFA where Hamza and I were planning to go. So I'll have to round up both boys, drive down to Birmingham to the Open House, then up to the hospital in Oneonta. Poor Bilal won't be thrilled to be dragged about, but there's no other way to do it. So tomorrow is my last chance in a while to sleep in, if the rest of the household cooperates. Thank goodness today is Friday!
The camera hasn't been out much, but at least I have one smiley pic of Bilal to share:
Tuesday, September 21, 2010
Guess what Hamza bought with his money he got for Eid? Inline skates! He is outside every day, learning to use them without falling. And it's not easy! Thank goodness for the knee pads, and the elbow pads, and the wrist pads, and the helmet. Otherwise it probably would have been many, many trips to the ER by now! I wonder how we ever rode bikes and skated on the roads without protective gear when we were little?
For Hamza the falls are becoming less frequent, although he's got a way to go before he is confident on the skates. But I have to admire him, he picks himself up and keeps going. That determination sure will take him places!
What a great way to have fun outdoors!
Saturday, September 18, 2010
Today marks the fourth anniversary of the day Bilal had his heart repaired. And what an amazing four years! I still remember the day like it was yesterday, yet the trauma of the day is gradually waning. We are so blessed that Bilal continues to thrive and grow, like any healthy heart child. We'll find out at his next cardiology visit whether anything in his anatomy has changed since his repair, but we feel confident, and continue to pray that it will be good news.
Bilal's specific defect, as I have mentioned before, is Tetralogy of Fallot. The American Heart Association has a good description of the condition.
This is a heart with normal anatomy
And this is a diagram representing tetralogy of fallot
And I decided it was as good a time as any. I finally registered with the Alabama donor registry.
After some research a little while back I had made the decision to become an organ donor, but I hadn't got round to making it official. Well, I completed a simple form online and now the process is complete. And I feel good about my decision.
Friday, September 17, 2010
Have you heard the great news that has been buzzing around the CHD community today? This is taken from a great online CHD blogging forum, Blog 4 CHD:
At 2:40 eastern time today, the national committee on newborn screening voted YES to recommend pulse oximetry screening for critical congenital heart disease be added to the newborn screening uniform panel.
Annamarie Saarinen founder of 1in100 has been hard at work in Washington D.C. at Senate Hearing Committees and the like testifying, providing study data, working with the UoM among many others to make this dream a reality.
“I don’t even know what to say right now…still in shock. Was not anticipating vote until January. Have to hug Eve and have a major cry right now. It’s due time…all babies are finally going to be screened before discharge. Policy priority #1: DONE!!!!!” Annamarie said.
We are so proud to have such an advocate as Annamarie working for this vast CHD community. Not all congenital heart defects can be identified by a pulse oximetry done at birth. In fact Bilal had a normal pulse ox at birth, meaning his oxygen level on room air was 100%. (We were fortunate that he had a neonatologist with a good ear, who heard a distinct heart murmur and consulted the pediatric cardiologist for an echo). However this non-invasive, inexpensive screening test can improve the chances of detection in a child who was not diagnosed with a heart defect in utero, reducing the chance of that child going home with an undiagnosed defect that could be life threatening. This is huge!
Wednesday, September 15, 2010
Tuesday, September 14, 2010
...... for doing homework.
The new play set is a very popular hangout for all of us. I came home yesterday to find Hamza doing homework in this nice shady spot. Safa likes to read up there and I often sit there while Bilal is up and down the slide and ladder. Plus we can keep an eye on the puppy and make sure he's not chomping on anything while we're out there.
Speaking of being outdoors, it was a cool mid 50s this morning when we awoke. That's a sharp contrast to the heat we've been experiencing in this seemingly never ending summer. It is still predicted to go up to the upper 80s today. But even the upper 80s with clear blue skies and the long shadows of the evening feel more like fall than summer. Finally! This past week it has be hot. And humid. And just unpleasantly hazy. At present the trees aren't showing any signs of Autumn; the foliage is still thick and green, you see very little sign of changing colors. But it will come, and we are looking forward to it.
Monday, September 13, 2010
The silly things that kids say.............
Bilal said to me today, "I cleaned up all my toys, so what do I get?" My response, "A hug". But then he clarified, "No, I mean, how much money do I get?" I explained to him that he doesn't get any money for doing what he's supposed to do, but if he cleaned up Mama's room I'd give him money. He cracked up, thought it was so hilarious, and no, he did NOT volunteer to clean up my room. He had got money as a gift on Eid, as is the tradition, and I think the concept of buying stuff with his own money has gone to his head! He bought a huge tub of Play-Doh with all sorts of accessories with some of his Eid money, and still has some more to spend. Got to admit, the Play-Doh has really been keeping him entertained for the last few days.
Another interesting observation:
Since the day Bilal turned four he has gone in my eyes from being a tall three year old, to a small four year old. It's funny how your perspective can change in one day! But I know he's growing taller for sure, because the pants and T-shirts he was wearing this past Spring are all too small on him. And I look a these pics and think he's really lost his baby face. Where has the time gone??!!
Last week I took the boys for their dental appointments. It was Bilal's second appointment, and he had done quite well at the last one, except sat in my lap for the entire visit. This time he was cool as a cucumber. He climbed into the exam chair all by himself,
He opened wide when he was supposed to,
And didn't mind having his teeth inspected and cleaned
Sunday, September 12, 2010
We have had a great few days, with our nephews spending time with us over the Eid holiday. It was sad to see them leave today. Can't wait until we get a chance to visit them in Mobile, I hope it will be soon!
On Wednesday night Safa and I went to the MCBA Chaand Raat celebration to meet some friends, eat delicious food, and apply henna to our hands. Actually I didn't get any, but we made sure that Safa had some on both of hers, thanks to the talented young ladies with their cones of henna.
After the henna dries and is washed off it leaves a lovely reddish orange color on the hands that stays for a few days. eventually it fades off with multiple hand washes.
Eid ul Fitr (the celebration at the end of Ramadan) was celebrated on Friday. It is a big day, especially for the kids who have fasted all or most of the month, so we had them excused from school. In the morning we went for prayers; this time at the Sheraton hotel in downtown Birmingham, instead of the typical location at the Alabama State Fairgrounds. The ballroom at the hotel is very grand, and a perfect match for the festivities of the day.
After prayers we went to a friend's house for breakfast. Later we went to the mosque for Friday prayers.
In the afternoon Farah, Adeel and the kids had a portrait session, and Safa, Hamza and I came along for the ride. The kids did well for most of the session, but it was 100 degrees outside, so they got overheated pretty fast. Once they were comfortably buckled in their car seats and the A/C was running they were all smiles again.
In the evening we went to another friend's house for dinner. Everybody brought a dish and there were more than 25 families, so you can imagine how much food there was. After fasting from before sunrise until sunset for a whole month we sort of went into food overload. Ate a lot!
I'll share more cute pics in my next post!
Wednesday, September 8, 2010
Tuesday, September 7, 2010
Last Thursday was Hamza's first football game band performance. The symphonic and concert bands played for the 8th grade game. Granted, HTMS got slaughtered against their opponents in their first home game of the season, but at least the band sounded good! Hamza came back sounding completely hoarse; it took a couple of days to recover. The next game is on September 14th.
Zakir has a big day on September 15th. He is headed to Atlanta for his citizenship interview. He was granted permanent resident status five years ago, and applied for citizenship earlier this year. Hopefully after this interview he will officially be a United States citizen! Next step after that, registering to vote!
Monday, September 6, 2010
We have come to the end of another eventful week, followed by a lovely long weekend. Talk about a ten degree drop in daytime temperatures and beautiful clear blue skies! It has actually been quite cool for the past two mornings, although today it warmed back up significantly.
On Saturday Zakir, Safa and I took Atlas for a walk along the Cahaba. Atlas loves being out there, the hardest thing it getting him back into the car. This time it involved Zakir picking up all 80+ pounds of dog and physically lifting him into the car. Usually he needs no convincing to get in the car when it's time for a ride.
There wasn't much water in the Cahaba this time, barely even ankle deep. Perfect for the puppy to play in.
And meet some new friends:
Actually Atlas didn't know what to make of these energetic labs he encountered. He felt a little threatened at first; but gradually got a little more comfortable around them.
After splashing around in the shallow waters of the Cahaba Safa took Atlas for a quick spin dry.
Hopefully with cooler weather in the future we'll have plenty of weekends like this.
Thursday, September 2, 2010
On day one of the conference Dr. Yerby talked about the new health care plan, both its pros and cons, as applied to our current situation in Alabama. Finally someone to explain the new health care plan in a non-biased way. Someone whose actually read the law, all 2000+ pages of it! I have read portions, and understand a good bit, but this talk went a long way in clarifying some confusing aspects.
So what are some of the salient features of the new health care law?
- Businesses with 50+ employees will be required to offer health insurance to their employees, or pay a penalty of $2,000 per employee. Smaller businesses that provide insurance to their employees (although they are not mandated), will receive subsidies and tax credits.
- The new law will eliminate Medicare co-pays for most recommended preventive services, such as mammograms.
- Medicare deductible waived for colorectal cancer screening. This is huge; I can think of many of my patients that decline colonoscopy due to the out of pocket expense. Also, the rate of death due to colon cancer is higher in Alabama compared to the national average. More pro-active screening may mean reduction in mortality.
- Improved reimbursement to physicians that provide preventive Medicare services.
- No caps on benefits. Which means a lot to parents of children with chronic illnesses or congenital heart defects. With one four day hospital stay and uncomplicated open heart surgery, we received a bill for $80,000 for Bilal. Thankfully insurance took care of most of this. Imagine a child with a more complex heart defect; it wouldn't take long to reach $2,000,000, which has historically been the lifetime cap with many health insurance companies.
-No denying coverage for pre-existing coverage. Consider that the disability rate in Alabama is 16.1%, versus 12.1% nationally. Alabama has historically ranked poorly as far as health indicators go.
- No discrimination on the basis of gender. This will translate into greater coverage for maternity and newborn care.
- More lenient criteria for Medicaid coverage. All citizens that are below 133% of the federal poverty level will be eligible. This could translate into coverage for over 50% of Alabama population.
- Primary care physicians in 2013-14 with get Medicare equivalent coverage for Medicaid patients. Historically Medicaid does not reimburse well. So maybe this will be an incentive for more physicians to accept Medicaid patients.
- This can lead to a potential hurdle: will there be enough providers to care for all the newly eligible Medicaid patients? Not as things stand right now. So you can give the entire population insurance cards, but if doctors won't see them, what use are the cards??
- Medicare part D (pharmacy benefits) has a 'donut hole'. Meaning after members reach a certain pharmacy benefit level there are responsible for a large portion of their med out of pocket. Until they reach a certain out of pocket expense, then the pharmacy benefits kick in again. We deal with this every day. Many of our patients have to do without their chronic disease medications because they are stuck in the donut hole. The new health care law will phase this out over time. Eventually, no more donut hole.
- Medicare advantage plans will be affected (privately administered Medicare plans). In Alabama, 24% of Medicare eligible patients are enrolled in these plans. They may not like the changes in coverage that may occur. I am not sure what kind of changes may occur.
-Better loan repayment for nurses, public health providers and allied health providers (such as physical or occupational therapists).
- Physicians working in rural areas for the purpose of loan repayment may be required to provide care in those areas for longer than the typical 1-2 years. This probably won't sit well, and some doctors may not feel it is worth their while to apply for loan repayment if it means that they will have to raise their kids in a rural area for several years. Think of concerns regarding quality of schooling, etc. I have no medical school loans to repay, and I work in a rural are by choice. Am I crazy??
- Improved funding for 'patient navigators'; people whose job is to guide patients through the complex health care system.
- Training grants for primary care physicians and even surgeons to work in health professional shortage areas (HPSAs). I think that all 67 counties in Alabama are currently HPSAs, but don't quote me on that!
- Until 2019 the federal government will be providing a significant proportion of the cost for these changes. after that, the states have to budget for it themselves. In Alabama's case that might mean up to 23% of the entire state budget.
Well this is what I got out of the keynote address. Several positives, several negatives, depending on how you look at it.You can decide for yourself.
Med-i-care: /ˈmɛdɪˌkɛər/ Show Spelled[med-i-kair]
Med-i-caid: /ˈmɛdɪˌkeɪd/ Show Spelled[med-i-keyd]