A good meeting

Katie finally got an appointment with Dr. Wood, an allergist at Johns Hopkins on Friday afternoon. The appointment was going to be for, amongst other things, a back allergy test, where basically they cover your back with about 50 different substances to ascertain which things she would be allergic to. Kate wasn't thrilled at the thought of enduring this one. His office had called to confirm the appointment Wednesday and informed us to stop the Benedryls for Hannah immediately - we were giving her between 4-6 each day to help her out. So by Friday afternoon, her arms and legs were covered with the rashes and hives and had turned a blueish/purple tint around the hives. As soon as they saw her, they cancelled the back test, as they didn't think that would be necessary at that point. Lo and behold, Dr. Wood agreed with our parental intuitions that this was probably the result of Hannah's body reacting to the blood transfusions she got during and after her surgery. He said that even though the blood type was correct that Hannah was given, i.e. the same as Hannah's, there are proteins within the blood that your body can treat as foreign invaders. He stated that if the rashes and hives were the result of the blood transfusions, the body would correct itself after 6-8 weeks. We're at the 5 week mark since her operation, so perhaps we have 3 more weeks of this. He gave us two medications to help manage the rashes and make Hannah more comfortable - they seem to be working as her hives have lessened the last few days. He said that if the rashes don't disappear after the 8 week mark, that they would need to do a blood test that would definitively show what the cause of the rashes were. He also recommended us to see Dr. Levey at Kennedy Krieger, whom we have seen previously, about her low blood pressure and discoloration in her legs. Katie left the meeting relieved that at last she talked with someone who could somewhat explain the rashes and hives and their cause. Thus, Hannah is feeling and looking better this weekend and that helps our stress levels and our moods.

We hope everyone has enjoyed the wonderful weather this weekend.

With love,

Tim Katie Carly and Hannah

Getting into A New Routine

We have been so busy this last week getting into a new routine. Hannah is getting PT, OT, and speech starting soon from Holy Cross Health Care. Hannah has baffled us with the continuation of daily break outs of hives. This is now 3 1/2 straight weeks of this and daily we have to give her at least 4 benedrylls (100mg) to even help her. Her blood pressure has also been much lower than normal and her coloring all over the place. I will need to order a pediatric blood pressure monitor today so we can keep a closer eye on this. So Tim and I have been filled with worry and consumed with trying to find the right doctor or where to turn with this. We have already talked to the surgeon and rehab doctors. This is what is hard about our health care system. You have to trust your instincts and have some background knowledge when to know things are not right. But then you don't have all the answers so you have to go advocating even when it wears you out...to keep asking and trying to get to the base of the problem. I am so fortunate to have the time...support...and experiences to keep the course and not give up until my instincts are at rest!

We took Hannah to see Dr. Taylor, her pediatrician, and he is trying to help us see a specialist in the allergy and immunology field, Dr. Wood at Hopkins. If not this we will need to see a neurologist as well. Hannah is very scared in the car. I don't think she is hurting but little whimpers come as she probably feels all bumps in the road and knows she is weaker.

Carly started her 3 hour per day drivers ed class last night. She and I survived her 31/2 hour wait at the Clopper road DMV to get her learners. Thought she would crawl out of her skin with all the different lines and waiting but came up with the prized photo/card at the end. Now to figure out how to teach her how to drive with two big vans...

Hope you all are having a great rest of your summer. Will keep you informed of Hannah's progress. Thank you for the cards, dinners, and acts of love!

Love, Katie....and the Larkins 8/5