What the Henkel, Padawan?

Favourite food: Her favourites change from day to day but currently she enjoys digestive cookies, cream corn, toast with butter, noodles (macaroni and sprirals) especially in tomato sauce, but more and more she is just interested in what we are eating.

Favourite drink: Besides breastmilk, she loves water. We’ve started giving it to her it with lunch and supper. She seems to understand the word “water” but also recognizes her special water bottle. Sometimes, when she wants to have a drink, she will just stare at the water bottle until I offer her some. She tries to hold the bottle on her own, but it’s still a little too big for her to manage.

Favourite activities: Loves playing with her feet, being read to, travelling on the bus, and talking to her singing doggy toy. She likes being in the craft room with mommy and listens to all sorts of music. When she really likes a song she grooves to it by rocking back and forth while she sits up.

Favourite games: Loves playing Peek-a-boo, getting kisses from us (and her stuffed animals), and playing “boing, boing” (jumping up and down) and spinning in her exersaucer. She loves standing up and playing with her new giraffe toy. The lights are on the top (which is to motivate kids to be more upright I guess) so she wants to be help up there all the time.

New talents: Recently, she found a way of eating macaroni by putting it in her fist and squeezing it until it reaches the top. That makes it secure enough for her to place it in her mouth. Once she figured out that technique she hardly misses any of the macaroni.

She’s also creeping backwards but she is working really hard on staying up on her knees to crawl and getting her arms to support her going forward. She still hates tummy time which is why it’s taking so long to reach this goal.

Eye Update: She is still on medication for her hemangioma. It’s looking better and better all the time. When I look at pictures that are a few weeks old, I can still see improvements from that time. They want to give her an MRI in May to check what is happening behind the eye. That is when they will decide whether or not it has reached the “plateau” stage. If it has, they will most likely start to wean her off the medication since it should not increase in size after that. Unfortunately that stage could take years to reach, if that’s the case, we will just keep her on the same dosage as she is on currently.

Can you believe that my little girl is going to be one year old in 9 weeks?

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.

We didn’t get the answers that we wanted to hear at the doctor’s today. The so-called “vascular malformation specialist” said that she thought that it is more of a hemangioma. That’s it. She took one look at her and wanted to move on, basically dissing her. I guess we won’t be her pet project after all. She did call Erik later in the day and schedule a meeting with a radiologist who will use an ultrasound to make sure that it actually is a hemangioma. Now, we have to wait until next week for that appointment, then the week after that we meet back up with her to hear the verdict.

I brought in all my notes and questions. She wasn’t impressed with that, stating that the information that I brought was from America where they “tell patients what they want to hear to make money”. I didn’t realize until after we left that the stats that I was using were from Australia. Why couldn’t I have looked down at the paper earlier? When I asked about the cortizone treatments (which I read should be administered as soon as possible for optimal results) she said that is only the very rare cases that receive treatment and doubted that Adrienne would be eligible for that. Then, when I asked my next question about the risks of flying with a hemangioma, she looked at me like I was crazy. She said that I couldn’t take her out of the country since she might be in treatment. WHAT!?!? You just said that she most likely wouldn’t get the treatment. Argh! When Erik asked if we would have to come into the hospital to get the treatment (if we would be so lucky), she said (shocked): “of course not! you could give it to her orally at home!” What!?!?! Why wouldn’t I be able to do that from Canada? Idiot!

So, we have to wait some more. In the meantime, I’ll be researching more on cavernous hemangiomas since that seems to be what the “doctor” thinks it is. At least, she didn’t just say: “let’s wait and see until next month”. I think I really would have lost it then.

Here is a picture of my supergirl after our appointment today. You can see that she isn’t pleased either. All this and she’s fighting a cold and having extreme tummy pain. She really is a superhero.

Since the last doctor’s visit, we have known that Adrienne’s eye could be caused by one of two problems: a benign tumor, called hemangioma or a vascular malformation which is basically when blood vessels and arteries have grown together incorrectly. I think it’s more likely that it’s the latter one since it seems to get bigger when she gets angry (which indicates that blood vessels are involved). The only thing that doesn’t point to it being a vascular malformation is that they are usually present at birth. Hers only showed up when she was about 8 weeks old. Although, it could be that it was small enough to go undetected.
I’m comforted by the fact that they are leaning towards a vascular malformation since the things I’m finding about hemangiomas on the internet are pretty scary. I found the following quote in a document that is trying to inform parents how to get insurance coverage for treatment since most companies will not cover it:

“Waner and Suen (1999) further stated, “Only 40% of hemangiomas involute with an acceptable result. Therefore, 60% of all patients with hemangiomas will require some form of corrective surgery” (p. 27). Williams, et al. (2003) also noted that “If these often disfiguring vascular lesions do not involute early, they may have profound psychosocial effects on the child and family” (p. 229).

I’m not saying that it doesn’t happen with vascular malformation cases but, from what I have read, it just seems like the hemangiomas grow quicker and can become a lot larger in size. The worst thing about the chance that it’s actually is a vascular malformation, is that it’s harder to get rid of. They can keep growing for life.

I’m hoping to find out more on at our next appointment on September 5th. They took pictures of her last time we were there, so they should be able to see for themselves how much it has grown and maybe be able to predict how much it will grow in the near future. I don’t want to put her through an operation, but if it’s an option to get rid of it as soon as possible, I will consider it.

I’ve been trying to limit how much research I do on this since I could easily drive myself crazy. But, I can’t just sit here and wait. I need to know what is going on with my little baby girl.