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

Home Sweet Home!

Hannah seems genuinely thrilled to be back home. There's only one thing missing and that's Carly, who should be back in the nest Friday night.

Hope everyone has a great weekend.

Tim and Katie

Homeward Bound - Let the Countdown Begin!

Very good news to post today; barring no major setbacks or unexpected illnesses, Hannah will be released from Kennedy Krieger Institute on Thursday, July 24th. She has come a long way in her recovery and is working extremely hard in the therapy sessions.

We are very thankful for the surgeons and nurses at Johns Hopkins Hospital, and the nurses, doctors, and therapists at Kennedy Krieger Institute. They are all amazing and we are deeply appreciative.

Yeah!

The Ledo's pizza never stood a chance!

Wow, what a weekend!

We had a very short and strange weekend shift this weekend - Katie got a little over 24 hours of freedom starting Friday afternoon and was busy the entire time between running errands and getting Carly ready for her week's stay at Villanova University for a leadership conference. She did get to squeeze in a massage and the therapist never left her shoulders and neck; go figure, there was an abundance of stress in Katie.

Meanwhile, Tim showed up on Friday with a LARGE Ledo's Pizza; that's 30 squares for you non-numerial types. It was gone by lunch on Saturday; I don't think the pizza knew what hit it. I had to stop her on Friday afternoon and night because I couldn't stand to watch her devour any more. It is very difficult for a Dad to say no when his child, who's been hospitalized for almost 3 weeks, continues to ask for "more pizza." What, this tastes better than hospital food?!?

Katie and Carly showed up Saturday night for a quick dinner and changing of the guards, and on Sunday Tim drove Carly up to Villanova. Carly was introduced to dorm life; 2 beds in a space much, much smaller than her bedroom and no A/C. I believe I heard "sweet Jesus" escape her lips. This should be an adventure..

We hope veryone had a great weekend.

Thanks for the support and well wishes,

Tim and Katie

Upright stander

This afternoon at therapy Hannah was in an upright stander for about 30 minutes. We played with a toy and listened to music while socializing with everyone and anyone who walked by her.

She had a blast!

Workin So Hard!

Hi all,
We have been so busy Hannah and I from 7:00 am till 10pm. We have 2 physical therapies a day, 1 occupational therapy session, see the equipment people, have 3 play therapy sessions and have our daily nursing routine. Yesterday, they put Hannah in a stander so she can get use to putting weight on her legs again. She looks like a skinny giant!

Our dear friends, the Rubins, helped us get junior size clothes because Hannah's shirts pre-operation spine....are showing her midriff! With the huge growth in size comes junior department now!

Hannah's GI tract is slowly getting back to normal! Hurray "operation Constipation" can be over for now! That is making Hannah's appetite come back slowly too! Right now she is munching on some noodles with mom's homemade veg...soup on them!

Today I get a massage for 15 minutes in the social worker's room. Yeah! Looking forward to that and an afternoon walk if I can sneak away during Hannah's nap.
Hope all is well with all of you. Miss you. We will continue to work hard so we can come home soon.

Katie and Hannah