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!

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!

Follow-up MRI

Today is the day of our daughter's follow-up MRI. As a mom, I've been looking forward to today for a couple of months. I REALLY needed to hear from doctors that our daughter is looking as good on the inside as she does on the outside.

Our day of tests started with a few frustrations, but our daughter did great. We have already received a call from the neurologist with some very positive news:

1. Our daughter's internal hemangiomas are regressing.

2. Our daughter's carotid artery seems to be carrying blood as needed.

3. Our daughter's brain is developing typically.

The official MRI report won't be available until Monday, but this initial news is a true encouragement. We will meet with all of her speciaists over the next two weeks to get their opinions, but this is FANTASTIC news!

A petite little girl

The last two weeks have been full of more good news regarding our daughter's health. Last week we met with our daughter's neurologist. Our last visit there was in February during our time of initial diagnosis. This appointment was originally scheduled as a routine follow-up, but we had several questions for the neurologist:

1. How do we know what is happening with the internal hemangiomas (tumors)? We know that the external ones are showing progress, but we have been able to give them additional topical medications/injections that the internal ones haven't had.

2. How can we monitor the loopy-loop of the carotid artery to insure that we're not headed for an aneurism or seizures?

3. What is the cause of the small head size and is it impacting her development?

The neurologist was great! He was very encouraged by her neurological development and felt that she is meeting her milestones at the same rate as a typically developing four-month old. He is going to put our daughter on a regiment of alternating scans to monitor the internal hemangiomas (MRI/MRA) and the blood flow through the carotid artery (CT Angiogram). We will begin this rotation in July and will have alternating scans every three months.

Then, this week our daughter had an appointment with her pediatrician. She was able to get all of her inoculations except for the Rotovirus vaccine (because it's live). The pediatrician thought she looked great. Our daughter is measuring consistently in the 10-20th percentile and is very proportionate. This means that we may have a petite little girl on our hands. One of my grandmothers was only 5 foot tall...so she could come by it very naturally!!!

Thank you for your continued prayers for our family. We were given good news that in just a few weeks our daughter's immune system will be strong enough for her to begin being around other children. By that time she will have been completely off her steroid for more than a month and will have two rounds of vaccinations. I am excited for the day we can bring her to church and my work to meet so many people who have been praying for us!