Whitney had her second birthday on May 29th. She got lots of new toys and spent the day with our family at Aunt Debi's and Uncle Don-Don's house. She got three cakes this year! Her favorite was a zebra striped cake with hot pink decorations. Her favorite toy was a new 3-D food puzzle.Whitney has done well with the move from Abilene to Dallas. She is enjoying being with Gigi, her favorite person. She has a new Pediatrician that we love and is seeing new specialists that have privileges at Children's Medical Center. It is much closer than Cook Children's was.
Whit's blood pressure has still been high, so she was referred to a Cardiologist and a Nephrologist. She will also see a Endocrinologist on July 9. These doctors are working together to try and determine the cause of her hypertension. The cardiology appointment went well. No problems or defects were seen with the structure of her heart and there is no damage to her heart caused by the hypertension as of now. The Nephrologist thinks that her problem might be related to her kidneys. She has a history of Grade IV Bilateral Kidney Reflux. We were told that it had resolved on its own about a year ago, but the Nephrologist said that it's highly unlikely that she went from Grade IV to absolutely no reflux. He suggests that she probably still has some kidney issues. So, we are scheduled to have a nuclear medicine procedure (DMSA) along with a renal sonogram to check for scarring and defects of the kidneys. These procedures will be done under anesthesia at Medical City Dallas. She also had some blood work done yesterday that will check her kidney functions and look for problems in her blood. We were also told that the Endocrinologist might want to do an MRI under sedation, so we are trying to get that done the same day so that she doesn't have to receive anesthesia twice so close together. The Endocrinoligist will be looking at her pituitary gland to check for issues related to her T4 (Thyroid-related) levels being high. Hopefully we will get some sort of answer and be able to correct the problem so that her blood pressure can be regulated. We were warned about the effects of hypertension over long periods of time including heart attack, stroke, kidney injury, and changes to the heart muscle. We will be so glad when we have some answers so that we can prevent anything more serious from happening.
Besides this setback, Whit is doing great. She has started seeing her new therapists here in Dallas. She will be receiving Physical Therapy, Speech Therapy, and Occupational Therapy at home. We are also going to be evaluated at Baylor Medical Center for a program they have which might help her even more with her eating aversions.
Lastly, Whitney completed her overnight stay in the nursing home on Monday night, so she is now in the MDCP program (Medically Dependent Children Program). This means that she will receive Medicaid (although I still haven't received a letter from them yet) and she can receive respite care through the program. We have chosen Gigi to provide the respite care, so she will be in good hands!
We are still waiting for Medicaid to come through with a spenddown program that was supposed to help us pay about $8,000 in medical bills from February and March of 2010. This is when she had the 24-hour EEG at Cook's, a swallow study, and was hospitalized in Florida with Pneumonia. The bills added up and we applied for assistance for those bills. We were told that the bills would be paid, but now they're saying that she might not be covered during that time. I have had a TIME dealing with all of this. I can't even begin to explain how many times I've copied and faxed invoices, requested itemized statements, written letters, etc. I was told once that they lost my paperwork, so I had to do it all again (and, yes, I saved copies the second time!). Now they're telling me they have no record of Whitney in their system. I'm just about fed up with the system. I've lost it a few times lately, but I'll keep fighting as long as it takes. One thing I've learned through this journey so far is that you can NEVER give up. EVER.
On a lighter note, Jason's new job is going great. He is working crazy hours (7am to around 9:30pm) most nights, but he's doing so well! He's a sales representative for a company that sells air conditioning units and other services. He is an awesome salesman! We are so proud of him.
