Headed in the Right Direction

We had an appointment today with the pediatrician where we discussed the great progress our daughter has made since her steroid injections two weeks ago. The swelling in her left eye, cheek and back of her neck are drastically reduced. She is using her eye more and more. She doesn't like the eye patching, but it getting more and more used to the idea.

Today the pediatrician and I talked a lot about medications. We decided to go ahead and give our daughter three of the four inoculations that a typical 2-month old baby would receive. The only shot she didn't receive is the live rotavirus vaccine that could be potentially harmful to to her compromised immune system. But, this weekend we will decrease her steroid again and increase the Propranalol to almost double our current dosage. All of the doctors have great hopes that our daughter will be completely off the oral steroid in the next couple of weeks. Coming off the steroid is key in enabling our daughter to be around other children.

I had to sit down tonight and write an email to my coworkers telling them officially that I'm not coming back to work on Monday as we originally planned. Our daughter simply isn't yet healthy enough to be around other children in a daycare-type setting. If her health continues to improve at our current rate of progress, she may be healthy enough to be around other children towards the end of April.

We are encouraged by today's appointment. Currently our daughter's blood pressure is good and we need it to remain strong as we make these adjustments with her medication. She was diagnosed with an upper respiratory infection today and we need this to clear up. Please join in in praying that our daughter's health will continue heading in the right direction.

Patches

Our daughter had another appointment today with her pediatric ophthalmologist. The doctor was pleased with how well her eye is opening and encouraged us to begin a routine of using patches. We are to patch her good eye for at least an hour of awake time each day. (The one hour doesn't have to be consecutive time, but the longer, the better.) Through patching, our daughter's vision in her left eye will develop more quickly because she won't be able to rely on her right eye to see.

I had a conversation with the doctor today regarding what age we'll be able to begin screening her vision to check for vision loss. I was told that a true vision screening can't be done until a child is between 3-4 years old.

So, for now, patching. We will see this doctor again in four weeks!

A day of celebration!!!

Today is a great day! :)

We began the day with a VERY early 8:00 dermatologist appointment at Dell Children's. This early appointment means that my alarm went off at 5:30 (which hasn't happened in a very long time). The purpose of the appointment was twofold. First, we needed to monitor our daughter's blood pressure again to see if increasing the Propranalol caused it to drop any lower than it already was. Second, he wanted to monitor the results from the steroid injections last Friday.

I anticipated heavy rush-hour traffic on the way to the appointment, but because of spring break, we actually got there 20 minutes early. (For those of you who know me well...this NEVER happens!) I thought I'd use a few minutes sitting in the parking garage to be productive and make a list of things I needed to get done today. While digging in the armrest of the car for a piece of blank paper to jot down a few notes, I found Jason's sunglasses that have been missing for over a month. This was our first cause for celebration!

When we were called back into the exam room for our appointment, the nurse prepared the fancy new blood-pressure machine that supposedly gives much more accurate readings than their old machine. At first we had no luck. We tried to find our daughter's blood pressure twice on each arm, but the blood pressure cuff would inflate with air and then give an error message after it deflated. In the back of my mind I was wondering if her blood pressure was so low that the machine was unable to read it. I was scared! But then, the nurse tried finding the blood pressure on our daughter's leg. Not only did the blood pressure register, but it was WELL in the range of normal. This means that we can leave the Propranalol dosage where it is for now and will possibly be able to increase it again in the near future. Another cause for celebration!

Then, it was time to visit with the doctor. He asked me lots of questions and gave our daughter a thorough examination of her face and neck where she received the steroid injections just five days ago. He agrees with us that the results are amazing. Her eye is now open about 75% of the way 90% of the time. This is an improvement from being open only about 25% of the way 25% of the time. Being able to use the eye is critical in our daughter developing vision in that eye. As he examined her cheek and back of her neck, he noticed that these tumors are much smaller and softer. The color of the birthmark is also much lighter in several places. More celebrating!

Because her blood pressure looks good and the steroid injections are working, we are able to cut the oral steroid dosage in half. The oral steroid is the medication which compromises our daughter's immune system and has some pretty strong side-effects. Cutting this medication in half is a cause for even more celebrating!

From our daughter's very first appointment with her pediatrician the first day she was home from the hospital, we have been scheduling appointments, experiencing medical tests and procedures, experimenting with medication combinations, and monitoring the effects. With each appointment I felt like we were hearing, "Well, that didn't work the way we hoped it would...let's try something else!" Today was different. We heard, "This is EXACTLY what we wanted to see!" We're on the right track and are truly celebrating good news.

The most exciting reason for celebration occurred as I was walking out of the doctor's office when the dermatologist said, "I'll see you in a month!"

Seeing clearly

From the very first suspicion that our daughter had a hemangioma on her forehead over her left eye, we were told that our top priority would be keeping watch on her eye. When the eye is so swollen that it can't open, it is unable to develop clear vision. We were told that the eye is like a muscle...use it or lose it.

During her first couple of weeks of life, our daughter's facial hemangioma was small enough that it didn't affect her vision at all, but as the hemangioma began to grow, her eye grew increasingly swollen to the point that she was virtually unable to open her left eye at all. When we received the MRI/MRA results in late February, our pediatrician was very concerned about her vision because the test results enabled the doctor's to see the extensiveness of the hemangioma under the skin. To hopefully reduce the inflammation and get the eye open, the doctors started her on the steroid immediately.

Though both the steroid and Propranalol made good progress in reducing swelling so that she could open her eye, it was still closed about 50% of her awake time, and the doctor's didn't think this was enough progress. So, today we had day surgery at Dell Children's Hospital in Austin. I had no idea how much my heart would heart when the nurse took her out of my arms and walked down the hall with her for the procedure. I am thankful for a friend (who didn't even know we were at the hospital) who called with an unrelated question. Our 15 minute phone conversation was probably the best thing for me!

The doctors declared the procedure a good success. Our ophthalmologist was able to do three injections right into her eyelid at a very surface level. The dermatologist did several injections in both her left cheek and back of her neck. The steroid will last for about a month in these locations to keep the swelling at bay. If necessary, we can do another round of injections at that time. We are once again thankful for a team of doctor's who collaborates to do what's best for her!

As I write this blog, it's only been about 10 hours since her procedure, and it's amazing the results we're seeing already. Her cheek is so kissably soft! We are praying that this first round of injections is all she'll need. The doctors hope that we will be able to increase her oral medications to a level where they'll maintain the reduced swelling. She's sleeping well due to some of the anesthesia that's still in her system.

Please join us in praying that our daughter's vision will develop clearly and that the days where her eye didn't open will not have a long-lasting impact!

A Good Day of News

Today we had a day full of good information regarding our daughter's health. We were able to get back on the Propranalol (a blood pressure medication) at a very low dose which shrinks the size of her hemangiomas. Her blood pressure is still a little low, so we're starting the medication slowly. We were able to see great progress with this medication the first 10 days she took it and can only imagine what a difference it will continue to make in her progress.

The dermatologist officially gave our daughter a diagnosis of PHACE Syndrome today. It sounds funny, but we are encouraged to have a label to give the many health complications we've seen in our daughter. We will be adding her name to the official PHACE registry with Texas Children's Hospital which will keep us unformed of the latest research and current studies regarding this extremely uncommon occurrence.

The other piece of good news is that the CT angiogram that we had on Friday has come back. The neurologist feels that he was able to gather all the data he needs which means that she won't need the traditional angiogram (which involves a catheter and complete sedation) at this time. The CT angiogram shows that where a typical carotid artery makes a "C" type curve, our daughter's does two "loopy-loops". We're not sure why, but everything looks structurally sound, so he's not recommending any type of procedure or further testing at this time. He still wants to consult with other colleagues, but believes we'll just follow-up on the artery in 6-12 months.

Thank you for your prayers for our family! We appreciate the meals you've provided, emails you've sent and gift cards you've given. We are truly thankful for your friendships and for how you've shown love to our family!!!

There will continue to be doctor's appointments, medications and minor procedures in the weeks to come, bur for now, our daughter's prognosis is very positive!
:)