What the Henkel, Padawan?

During our hospital visit last Monday we met with the doctor who will be observing the progress of Adrienne’s eye. The staff took a blood sample, her blood pressure (both resting and active) and heart rate levels. Since all seemed normal we were set to start the treatment.

At the beginning of the meeting, the doctor read her chart where it said that we should start a steroid treatment and if that didn’t work, we could move on to the beta blockers. I was shocked! I would have been confused if any of the past meetings had been in Swedish, but since I understood everything that had happened I knew it was a mistake. I can’t believe that our doctor would write such a thing! We NEVER talked about steroids, just how lucky we were that this new beta blocker treatment came along when it did. Anyway, we corrected the information with this (very nice!) doctor and went on with the original plan. He even tried to call the other doctor but she was unavailable.

The doctor suggested that we wait for our next visit when a dermatologist colleague (who has a special interest in vascular anomolies) could join us. It would be in a couple of days and we could get started then. When I said we didn’t know (before the appointment) if we were suppose to be starting immediately or not, but were prepared for either, he changed his mind and said we could start right away! I really like him!

We talked about how much supervision would be needed, so he called his friend the cardiologist (this guy seems to have a lot of friends around there! haha) who said that this medicine is used frequently in the cardiology wing and they have never had a problem with it. He suggested that we handle it ourselves, since he didn’t think there would be a problem plus he said they have been getting overloaded with all the extra cases who have to be observed unnecessarily.

Our new doctor was convinced by this and wrote us the prescription that we’ve been waiting on for months. We thought we had made it, until we were told at the pharmacy that the drug was unavailable and had to be special ordered. Our old doctor called today and informed Erik that it was harder to get since our prescription is for the liquid version, older children and adults could have used the regular tablets. That makes sense, no one at the pharmacy had been able to explain why it wasn’t available.

We started last night and I think I can see a difference already. I might be fooling myself or it might have just been a good day, but I think it’s starting to work. She also had to get her second round of vaccination shots today, so she has been crying which usually makes it bigger not smaller…so I’m just saying…maybe it’s working!

Here’s a picture of her from today. I don’t think you can see the progress from it but it sure is cute.

I call it “Whatchoo talkin’ about Willis?!”

Adrienne is 5 months old today. At the hospital they weighed and measured her. She is 6.85kg (15lbs) and 63cm (25in). We’re planning on starting solids in a month, but we won’t push her if she’s not ready. We’ve been using her corrected age to follow the development milestones and she is spot on. The only thing that she hasn’t done so far is roll over and she is so close! We’ll have to keep practicing!

After waiting more than a week, we found out on Thursday that the next doctor’s appointment will be taking place the following Monday - that’s tomorrow! I am so happy that we didn’t have to wait long after receiving the notification, like I thought we would.

I’m expecting to get her started on some sort of treatment regime tomorrow, but also trying not to get my hopes up. Because we have to get the treatment through the oncology department, we might be dealing with a new doctor. It could turn out to be some sort of meet n greet where they just examine her eye and set up another time. I will scream if that happens.

I can’t believe how nervous I’m getting. I have butterflies in my stomach and I don’t think I’ll sleep much tonight. I’m not excited about the fact that we have to be in the hospital two hours before the appointment. Not sure why we have to be there so early, but it was in our instructions from the hospital.

I’ve done a lot of research on other babies who are getting propranolol for their hemangioma and a lot of them have been kept for observation at the beginning. This wasn’t mentioned to us by the doctors we saw a few weeks ago and that’s what makes me feel like tomorrow might turn out to be another preparation day. I wouldn’t mind staying in the hospital to be on the safe side, but I wouldn’t mind jumping in with both feet either. I just don’t know enough about the Swedish medical system to take a guess at which one it will be.

I’m also nervous that we are going to start her on medication that hasn’t been used much for this purpose. It’s only been since June that it was found to help treat hemangiomas, so I don’t have much to research to rely on. The results I have seen have been amazing. Some of the cavernous portions from these studies have disappeared within weeks.

As soon as the treatment starts, we’ll be keeping a journal and taking daily photos to try and keep track of her progress. Hopefully, we’ll be able to post a significant improvement over the next couple of weeks. But, of course, I’m getting ahead of myself again.

Wish us luck!

Well, it looks like our young Padawan will finally be getting treatment for her eye. We met with the panel of doctors from various fields and they decided to try the new beta blocker treatment. They were shocked that we had heard about the new treatment since it was only discovered in June 2008. The great thing about this is that it has far fewer side effects than the steroid treatment.

Now, we wait for them to book an appointment with the children’s hospital who will setting up the treatment schedule. Because it’s such a new treatment, they will have to keep a close watch on her overall health. That means our extended trip to Canada will be postponed for a little bit. We’re not sure for how long until the treatment schedule is established. Disappointing, but very much needed for our little girl.

Here she is enjoying her first time in her new Bumbo chair. It’s suppose to help her strengthen her neck muscles, supplementing her much hated “tummy time”. It’s already helping her digestive system since every time we put her in it the apartment experiences major earthquake tremors.