Luke 2:19...a mother's priviledge

Hearing check last week.

When thinking about her new baby, Luke 2:19 says, "But Mary treasured up all these things and pondered them in her heart." I've been thinking about this verse a lot recently. Like Mary, I believe all mothers have the distinct privilege of storing up images, conversations, snuggles, and stories of our children and bringing them to mind on various occasions. That was the case for me today!

Our daughter turned four just a couple of weeks ago. With this big birthday also comes big medical appointments. You know, the one where you get your hearing checked, get your vision checked, and get four shots. Well, that was her fate last week. During this appointment, she did great. Her hearing is good, her vision is ok (not perfect, but we already knew that from our appointments with her ophthalmologist), and the four shots were administered without too many tears. Now that's a cause for celebration! At this appointment her pediatrician and I recalled several appointments from when our daughter was little. We remarked on her appearance and how well she's doing physically. Our pediatrician is someone who has helped to make this journey feel safe for us to travel!

But today was a day I thought might never come. Our daughter had a regularly scheduled visit with her dermatologist. This same dermatologist was the one who called us from Hawaii when she was only a few weeks old to tell us our daughter had something called "PHACE Syndrome". He began coordinating her care including scans (both MRI and CT on a regular basis), appointments with other specialists (cardiologist, neurologist, and ophthalmologist), monitored her fluctuating medication needs, and was someone I could trust to answer even my most simple questions. I truly believe that God brought him to the Austin area just months before our daughter's birth for the purpose of coordinating her care. He is an amazing man and has been a huge part of our daughter's life.

March 2010

Today's appointment seemed routine to me. We were having her blood pressure checked, he would look at her hemangioma to check for growth, and we might talk about the idea of using laser treatment in the future. But something happened that I did not expect. He has taken her completely off of her medication. He said that there is no more need for us to see him regularly. He will put a note in her chart and will make sure that if we ever need him we can get to him with no problem, but that we're finished. FINISHED! I did not know we were so close to the end, so this news came over me with a tidal-wave of emotions. All of the things I've treasured in my heart about this journey with my daughter flooded my mind...having teeny tiny IVs inserted into her veins so that she could have scans with contrast, nursing her in doctor's offices as we had to bounce from office to office through the course of a day, keeping track of medications on paper because she took so many different medicines that we were unable to monitor them in our heads, going back to work and having family and friends stay with our daughter because it was not safe for her to be around other babies due to her steroids, looking at my tiny baby and wondering how she would ever be able to look at herself in the mirror, being frightened to receive questions strangers would ask about my baby's appearance...and now we're finished. FINISHED!

We will continue to monitor the growth of her hemangioma, and if there is any cause for concern we will get back on the medicine. We will continue to monitor her carotid artery as she grows and will continue to have conversations with doctors. But overall, this part of this journey is behind us.

I Thessalonians 5:18 says, "In everything give thanks: for this is the will of God in Christ Jesus concerning you." I am thankful for this journey and for the love we've received from so many of you. I am not the same person I was four years ago before our daughter was born, and I am thankful for the opportunities I've had to share our story with so many.

Please know that I also think of you when I treasure all of these things in my heart! Without our friends, family, and church, I can't imagine how different this journey would have been.

Dressed up like Elsa to go see "Frozen" for her birthday party!

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!

Thankfulness

The cutest kitty!

Yesterday, our daughter had an opportunity to visit with her pediatric dermatologist for a regularly scheduled check-up.  It was another day for thankfulness!  It had been about 4 months since our last visit with this doctor, and our daughter continues to make great progress.  He doesn't even see a need to do any scans at the end of the year.  HOORAY!  Just last month, the dermatologist considerably lowered her Propranolol dosage and was very pleased yesterday with the progress she is making.  Her most current dosage is 1 per kilo.  The pink on her face and swelling are a little increased, so we're not lowering her dosage again right now, but hopefully we'll continue to wean her off of this drug next year!

Another celebration from this appointment was her weight.  When she got on the scale yesterday she weighed 31.5 pounds.  WOW!  I was shocked.  She really has grown in the last few months.  Our little girl who was so petite (struggled to be in the 3rd percentile) for so long is now over the 50th percentile mark.  Woohoo!!!

We do have a new health issue that we shared with the dermatologist.  Our daughter has recently developed some recurring sores on her scalp.  He believes they are innocent (possibly related to taking Propranolol, which is a beta-blocker), but did some culturing just to be safe.  He is treating her with a topical (moose-like) steroid until the test results come back.  The sores don't really seem to bother her much, but we want to be extra-cautious.  We should know the results of the testing in a couple of weeks.

Fall Fun!

During this time of year when we all pause to be thankful, I am reminded of how blessed we are.  I am thankful for a medical team that has had the wisdom and compassion to support our family for almost three years.  I am thankful for a drug that has been around for a long time helping people with blood pressure problems.  I am thankful that this same drug has recently proven ultra-effective in helping children with significant hemangioma.  Without this drug, our daughter's birthmark would have continued to proliferate and our daughter would be extremely disfigured.  I am most thankful for so many who love and care for our family.  There are too many of you to count or name, but I think of people who continue to pray for our family, ask about our daughter's progress, and give of yourselves unselfishly.  You will never know how much we appreciate you!

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!

Great Appointment

Today our daughter had an appointment with her dermatologist. He is VERY pleased with her external birthmarks, MRI results, and development. Though she is the second oldest patient he's ever had on such a large dosage of Propranolol (3 per kilo), he is not concerned. The medication is working and we are thankful.

Looking in the Mirror

Tonight I had a memory flood my mind. I remembered back to when our daughter was just a few weeks old. She weighed less than 10 pounds. Her birthmark was very large and dark red/purple. Her cheek looked like she had a golf ball in her mouth and her eye was swollen closed. I began adding "bella" to the end of her name as a reminder that she is beautiful.

I distinctly remember a morning when I had given our daughter her normal dose of medications and took her with me into the bathroom to wash out her medicine dropper. Her reflection in the mirror caught me off guard. I'm not sure why, but looking at our daughter in the mirror was shocking to me. I cried because I was sad for her future. I wondered how this baby girl would ever be able to look at herself in the mirror as she got ready for school. I feared the ridicule of peers who wouldn't understand why she looked different. I thought about her teenage years and how hard these years are for all girls, much less a girl who looks different from others. I was so sad!

Flash forward two years...

Our daughter just had her second birthday. She is a girlie girl and I was excited to get her some dress-up clothes, hair bows and jewelry to add to her collection. Jason found a full length mirror on sale which thrilled me because I thought it would complete the "dress-up" theme. She could primp and look at herself all day long!

Tonight our little girl got down from the dinner table with a little food (ok, a lot of food) still on her face. She walked up to her new mirror (which still happens to be in the living room) and touched the dirty places on her face. She noticed that her face looked different. All of a sudden I was reminded of my fears from her first few weeks in our lives. I am thankful that her beautiful face is not disfigured. I am thankful for the doctors who knew about the impact a blood pressure medication would have on her birthmarks. I am thankful for her smile and the joy she brings to my life. I am thankful for this experience tonight where I was reminded that our daughter is a miracle!

Thank you for the specific prayers you've prayed for our daughter!

Our big girl

From the time she was diagnosed with PHACE Syndrome, we've been fighting a weight battle...we couldn't get our daughter to gain. For a time she was dangerously under the growth curve, and we've worked hard to keep her at the 3rd percentile. Most recently, her pediatrician has had her on two doses of Pediasure a day to get her to gain weight! I just packed up her 6-9 month clothes last month...when she was 20 months old!!! We all figured we had a pretty petite girl on our hands!

But a few months ago, when our daughter was weened from her steroid, her appetite appeared! She is now a much bigger eater. Her favorites include rice and beans at any mexican food restaurant, mac-n-cheese in her lunch each day, and cupcakes with icing! It is with great joy that I announce that she has now crossed into the 10th percentile for weight. She weighed 22.07 pounds at her weight check appointment on Friday. The pediatrician even commented how she's filling out and looking more and more like her brothers.

I thought I'd never be able to call our daughter "big". Hooray...may the growing continue!

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!

Great News

On Monday our daughter had a follow-up appointment with her dermatologist. He thought she looked better than ever. He did not notice any swelling and liked how wide open her eye is. He made the decision to go ahead and take her off of her steroid...HOORAY! This is the day we've been waiting for since February 19th! This means that she will hopefully be able to be around other children by the end of the month.

During our appointment, our daughter was really personable. She was very alert and laughed and talked with the three doctors in the room. The dermatologist commented how pleased he was to see that she was on track neurologically. He was not overly concerned about her head size. He did say that it's odd that she's "crossing lines" as she falls off the growth chart. He commented that he would talk with his colleagues in Houston to see if there could be a correlation between head size and PHACE Syndrome. We see the neurologist at the end of next week where we'll talk more about her head size.

I spoke with our pediatrician today to let her know the good news from yesterday's dermatologist appointment. She asked us to keep our daughter secluded through the end of the month. Then, after she has her four month shots, she'd feel much more confident about allowing her to be out around other children. HOORAY!!!

We see the ophthalmologist tomorrow. Hopefully she'll be just as pleased with the progress!

Regression?

Our daughter had a follow-up appointment with her dermatologist on Monday. It's hard for me to believe it's been a month since we've seen him. I had such high hopes for this appointment. She's made such good progress and we've slowly been lowering her oral steroid dosage. I truly thought that the oral steroid which compromises her immune system would be completely stopped. Unfortunately, this was not the case.

It has been exactly a month since our daughter underwent the outpatient procedure where they injected steroid into her left eyelid, cheek and back of the neck. This medication typically lingers for 3-4 weeks. We are now at the end of that timeframe. The dermatologist noted that our daughter's left eye looked a little more puffy today than he remembered it looking the last time he saw her. He also noticed that her left cheek felt warm (which indicated additional blood flow to the area). He is very interested to see what her body will do now that the majority of the injected steroid is out of her system. He asked us to watch her very closely over the next week.

Because of these indicators, the dermatologist did not adjust our daughter's medications at all. She is still on Propranolol, Zantac and what he refers to as a "spit's worth" of the steroid, but he admitted that we may need to increase the oral steroid dosage again should the swelling return. He also talked to us about a topical medication called Timolol which is a beta-blocker like Propranolol, but in the form of a cream. This may be something we try in the near future but will most likely only benefit those hemangiomas that are closest to the surface of the skin.

So, for now, because our daughter will remain on the steroid, she will not be able to have the live Rotavirus vaccine. She will also continue to have a compromised immune system which means she shouldn't be around other children.

Thank you for your continued prayers for our daughter and our family!

No appointments...ha!

Last week was scheduled to be our daughter's first week since her birth where she had no scheduled doctor's appointments. We decided that we'd do a quick nurse visit to check on her blood pressure, but no specialists. Her blood pressure was off the charts high, so the doctor decided to do another adjustment to her steroid and Propranolol medication. We continue to head in the right direction with meds!!!

Well, while we were with the nurse on Wednesday having our daughter's blood pressure checked, I received a text message from my husband that he was being admitted to the hospital with pancreatitis. I knew that his stomach had been bothering him that morning, but I had no idea it was so serious. I didn't even know what a pancreas did!!! His pain was terrible. For the first two days they didn't even let him have any water to drink. Pancreatitis is a slow recovery. He was able to be released from the hospital on Easter Sunday. So, our first week of no doctor's appointments with our daughter found us in the hospital for five days with dad.

We are so thankful for our friends and family who helped us out last week and who continue to support us this week. You guys are amazing and I don't know how we would have made it without you!