Tuesday, May 20, 2008

Recap of Cincinnati Trip.

Overrall, the doctor's visits went very well. In general, we did not learn much that we had not already known about little Ella's condition, but we wanted to accomplish two specific goals: establish a relationship with EB-medical experts and have blood drawn from Ella, Katie, and I to have genetic analysis determine the scope of her EB condition as well as where the gene mutation originates. We accomplished both goals.

11 doctors paid Ella a visit and each consulted with us for approx. 20minutes. We sat in a room and each of the 11 docs. came to our room and analyzed Ella's skin and questioned us as to her overrall condition. The docs. included one of the best EB pediatric dermatologists in the country,optomotrists, orthopedist, nutritionist, gastrointologist, pediatricsurgeon, physical therapist, occupational therapist, social worker, psychiatrist, and maybe a few others.
A few of the docs. saw her for just a minute or two and then explained they did not need to comment b/c of how well she is doing (gastro and pediatricsurgeon). All in all, they were pleased with her development, activity level, and overrall nutrition and mood. Many EB babies are behind developmentally, but Ella is right on schedule with her weight, length,crawling, and verbal development. We now have an established record to work with in case any medical symptons develop in the future that require attention instead of starting from a blank slate in terms of who Ella is,what her medical history originally looked like, etc. Plus, the doctors allc ommented on how beautiful of a little gal she is, so they can now not possibly forget who she is:-)

Drawing blood from her was the most difficult visit. It was the only visit where she became, naturally, upset. The lab tech had a difficult time onthe 1st attempt finding a good vein to draw from. To all children, needles are no fun, and Ella let us know it. A 2nd lab tech was called in from the bullpen to successfully find a good vein, which she did, on the top of her left hand. Ella cried the whole time, but alas, the tech drew 7ml of herblood as quick as possible. Subsequently, the tech drew blood from both Katie and I.

This is a very important test. This is the best genetic lab in the US which can procure the test we need to determine the type and subtype of Ella's EB. Though not required to treat and care for Ella, this analysis will help give Katie and I a glimpse as to the severity of her case. Also, it will tell us the likelihood of whether any future children would have EB. We have waited this long to start the process because as I stated, it is not a required test. It makes no difference what the analysis shows in terms of her day to day care. We wanted to have the folks at the EB center in Cincinnati draw her blood instead of a typical blood lab. Hence, the long wait in taking care of this. Now that we have the ball rolling, we will wait anywhere from three to six months for results.

We were glad we made the trip! VA Medicaid paid for it in its entirety including the costs of two direct flight airline tix, lodging for 4 nights, rental car, and per diem food costs. According to the Commonwealth, EB is considered a disability, and b/c of such, VA medicaid assists family's with the costs of medically necessary activities which is great. I am not a fan of big government programs, but I must admit that my beliefs about tax-payer funded medical programs has dramatically changed since Ella's birth.

In addition to the medical component of the trip, we had an absolute ball in Cincinnati and Indianapolis with my sister Maureen and her husband and daughters Alice and Edie. We were able to visit the Cincinnati Zoo, see a Reds-Indians MLB game at Great American Ball Park (thanks to Tom Zumbiel hooking us up with sweet tix), and bro-in-law Dan took me to my first Indy Car series racing event at the Indy 500 track. Of course, we ate like champs all weekend at thanks to Maureen and Dan's grill. Edie's baptism on Sunday was a beautiful event. We were so glad to be able to witness her big event. Both she and Alice are so adorable!


Anonymous said...

Glad to hear the visit was successful. You already knew Ella was an exceptional little darling, but it must have been good to hear it from the experts. We pray that God will continue to protect and bless Ella and her parents.


Anonymous said...

I'm glad the trip to Cinci went well and your family was taken care of. I'm glad there was some down town in the midst of a whirlwind of medical visits. We were pleased to read about Ella's progress... what a blessing and reassurance that God is our Rock and Foundation on which we rest and know that He takes care and provides.

Love you guys,