She looks fabulous!

Our family had a great time at the Houston Children's
Museum over spring break!

That's how we were greeted today by our daughter's dermatologist this morning   He walked in the door, took one look at her, and said, "She looks fabulous!"  It had been 5 months since he'd seen her and he couldn't believe how much she's grown.  He took lots of time to look closely at her face, neck, cheek, and eye and was very pleased with her progress.  She still has hemangioma in all of these places, but they appear stable.  It's been a long time since we've adjusted her Propranolol dosage, but she's gained enough weight that she's now on less than 1 per kilo.  He didn't want to decrease her Propranolol and asked us to keep him informed if we began to see growth again (because he would increase her dose if it is needed).  I feel very comfortable that we're slowly weening her off the medication as she grows, even though we're not adjusting her doses.  What a great plan.

We also talked about several other questions:
 -  When to schedule another MRI?  He wants to consult with her other specialists to help make this decision.  He isn't interested in seeing her hemangioma in this scan, but is more interested to see her carotid artery.  She's has grown a lot in height and weight since her last scan (January 2012), so it is likely we'll scan again in the near future.
-  Is she still one of the oldest children on Propranolol for PHACE Syndrome?  She is still the second oldest child he has had on Propranolol, but he is not concerned.  We talked in depth about some recent consensus meetings regarding the use of Propranolol, and the decreased concern about blood sugar and blood pressure.  He feels very confident that Propranolol continues to be the best medication for her.
-  Do we need to schedule any follow-up visits with our daughter's other specialists?  He did not feel that it is necessary for us to visit the cardiologist or neurologist unless we have specific questions or concerns regarding her development.  We already have an appointment with her ophthalmologist for later this summer to follow-up regarding her vision.

Days like today are encouraging and remind us to be thankful for our daughter's progress!  She truly is a miracle!

Today our daughter had another round of appointments with her specialists, and it was a day full of great news!

We began the day with her ophthalmologist, Dr. Onan.  I was very nervous about this appointment because it had been a year since we'd been with this specialist and we knew her goal was to try to do some exams that our daughter had not had since she was just a few weeks old.  Our daughter is "very two" right now, so I wasn't sure how she'd comply...but she was GREAT!  The doctors started out by checking the pressure in her eyes, putting drops in her eyes to dilate them, and then they had her identify pictures of different sizes.  Then, after playing in the lobby for about 15 minutes, they gave her a very thorough exam using multiple flashlights and lenses.  In the end, we found out that our daughter is depending on both of her eyes equally.  She is not dominant with either eye which is a real praise.  With the number of days her left eye was swollen closed as an infant, the doctors were afraid her left eye might not be developed properly.  For her age, her vision is good.  She may need glasses one day, but it won't be due to PHACE Syndrome!  We will visit Dr. Onan again in one year.

Then this afternoon, our daughter had an appointment with her dermatologist, Dr. Levy.  He is an amazing support and I always look forward to opportunities to hear from him about our daughter's progress.  I was anxious to ask him about the possibilities of laser treatments and begin to make a plan regarding some of her blood vessels and remaining hemangioma.  He is very pleased with her progress and thinks she looks beautiful.  He described her most recent MRI as "unremarkable".  We discussed our options regarding laser treatment and will talk about them again when the hemangioma is no longer growing.

We did have a strange "first" today when one of our daughter's hemangioma bled considerably while she was sucking her thumb during a nap.  Luckily, we were in the car on our way to see Dr. Levy when this happened, so I was able to ask him about this.  We found a couple of places in/on her mouth that could have been the culprit, but Dr. Levy said that he would not define this as "ulceration" since it was the first time we've seen something like this.  We will watch for re-occurrences.  We will try to wean her off of the Propranolol over the next months and plan to see him again towards the end of the year.

Once again I am convinced that it is the specific prayers of our friends over Ella's eye that have contributed to her positive appointments today.  We know that God hears the prayers of His people and our daughter is just one example of this!

Wanna hear some good news?!?

That's how my conversation started with the neurologist tonight, "Wanna hear some good news?" He was calling in response to our daughter's MRI/MRA scans that were performed last week.

Let me back up to the beginning of this chapter of our lives...

In early November, our daughter completed her routine round of doctor's visits with her specialists (Neurologist, Dermatologist, and Ophthalmologist). They all agreed that because it had been about a year since her last MRI/MRA, it would be a good idea to scan her again to see what is happening inside her body.

When it came time to schedule these tests, Austin Radiological was very nervous about fitting her in before the end of the year. She was scheduled for 6 separate exams both with and without contrast (orbits, brain, head, face, neck, and chest) that would take up to 3 hours on the table. Finding that type of time in the ARA schedule was tricky, but we were lucky to talk with a very helpful lady to was able to fit us in in only a couple of weeks...then our daughter was diagnosed with bronchitis, so we had to postpone...then ARA scheduled her for a mobile table (which can't be used when a child is being sedated), so we had to postpone...then her lungs weren't clear, so we had to postpone...then ARA requested we move from a PM time to an AM time, so we had to postpone...then our daughter was sick again, and we had to postpone...six times! Her pediatrician eventually chose to put her on a steroid to strengthen her lungs so we could have the test, and voila...she had her tests on Friday, 1/13!

The tests went well. Our daughter did great and slept through all of the scans (the paramedics were a little concerned that they wouldn't be able to keep her asleep the whole time). The medications rocked her world, but by the next day, she was able to walk and talk normally. She came down with croup that evening, but everyone assures us it was unrelated.

So, to our results...

- The hemangioma around her eye is GONE! This is the area that received the most prayer due to her eye being swollen closed and vision concerns from the time she was just a few weeks old.

- The hemangiomas on the back of her neck and in her chest are stable.

- Her carotid artery is stable.

- Her brain looks great.

- Her heart looks great.

Celebrate with us as we celebrate our daughters health! We are thankful!!!

From the perspective of the specialists...

...our daughter is doing great! As we went from one MRI follow-up appointment to another this week, I was so thankful to hear how pleased everyone is with her progress.

On Monday we saw the neurologist. He said that the MRI showed "stable vascular anatomy without new aneurysm or other adverse change since March." He is pleased with her physical, neurological and emotional development. (She was quite a flirt with him, which allowed him to see her precious personality.) He does not have any immediate plans to rescan her and would like to see her again in 6 months.

On Tuesday we saw the dermatologist. He said that he too was pleased with the MRI results, but felt that the hemangiomas on her cheek, neck and eye looked a little enlarged. He has put her on a two-week regiment of oral steroids with the hope this will give involution a boost! I will talk to him over the phone in two weeks to tell him of the progress and then he will see her again in 6 weeks.

On Wednesday we saw the ophthalmologist. She said that she was also pleased with the MRI results, but agreed that the hemangioma on her eye looked a little larger than it did a month ago (she actually got out the Christmas picture I sent her to compare...smart lady!). I also talked with her about our daughter's constant teariness, so she prescribed an additional topical steroid that we will drop in our daughter's nose in hopes that it will shrink down any swelling around her tear ducts. We will see her again in two months.

After finishing with all of these appointments, I called and talked with our pediatrician to update her on the new medications. She is so fantastic to talk with me and answer all of my questions. I am once again reminded of how blessed we are to have a medical team giving us a consistent message. Thank you God for doctors!

Now, for the best news of all...our daughter started saying "ma-ma-ma-ma" today! Hooray! This is probably the best Christmas gift she could give her mom!

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!

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!