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!

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!

Finally!

We've known since this summer that our daughter would have another scan in December to evaluate her hemangiomas, carotid artery and aortic arch. She was originally scheduled for a CT Angiogram for 12/6, and then scheduled to see her dermatologist, neurologist and ophthalmologist all on 12/9. We were so excited to get all of these appointments in before January 1st! What a great plan!

Then, after attending the PHACE Family Conference in Milwaukee this fall, Jason and I wondered about the possibility of changing the order for the CT Angiogram to an MRI/MRA. From what we learned, we thought an MRI/MRA would likely be able to see all the necessary images, but with MUCH less radiation. So, we asked our specialists, and we were told that we could easily change the orders without a problem. Woohoo!

Unfortunately , the orders for the new scan did not come through until 12/2, which meant we had to choose a new day for the scan. After some rescheduling and flexibility on the part of many specialists, we were able to get every appointment rescheduled for this week, but we would have to drive to San Marcos first thing Monday morning to make this happen. When I took our daughter on Monday morning for her MRI/MRA in San Marcos, she had quite a bit of congestion and a low grade fever, so the paramedic opted to delay the scan due to fears with the anesthesia. (I am thankful that they are cautious!)

So, once again, we relied on the flexibility of others, we moved the scans and all of the specialists appointments for the 3rd time and tried again.

Today we were successful. Our daughter was able to have her scans. The radiologist was able to get all of the pictures requested by the specialists. The paramedics that helped us were super kind and we were even able to do a blood draw for a PHACE Syndrome genetics study.

This 3rd round of rescheduling appointments with our specialists means that I will have to stay home with our daughter next week while Jason travels with the boys to Missouri to see family for the holidays. I hate that we're going to be apart for a few days during my holiday break, but I am thankful that all our our specialists are so accommodating and are "fitting us in" during this busy time of the year!

We received a call tonight from our daughter's pediatrician that the MRI/MRA report has already been received and that everything looks stable. Good news! We will see our specialists next week and will learn more details about the test results in the week to come. Stay tuned!

Who Knew?

So, I had the boys at the dentist over the Thanksgiving break for their regular check-ups and cleaning. While we were there I mentioned that they had a little sister at home. I said something like, "she is only ten months old, but she DOES have eight teeth". They practically insisted that I bring her in immediately. They informed me that they begin seeing children as young as six months.

So, yesterday our daughter had her first dentist appointment. It was almost comical. Though we do see a pediatric dentist, I'm not sure the dental hygienist has had previous opportunities to work with many babies. She asked me questions like, "Does your daughter currently take a pacifier, still drink from a bottle, suck her thumb or drink from a sippy cup?" REALLY? She's 10 months old...she does ALL of those things! The sarcastic side of me wanted to proclaim that our daughter is proudly drinking from our crystal stemware, but I withstood the temptation and politely replied that in fact our daughter does currently do all of those things, but that she's already learning to use a straw.

Then, when the dentist came in, I sat our daughter in my lap facing me. I then laid her down in the dentist's lap for him to do a quick exam. He was pleased with her teeth so far and we'll be back in 6 months. Who knew that babies so young were supposed to see the dentist?!?

A week of firsts

This week was a week of firsts for our daughter!

1. Our pediatrician was PLEASED with our daughter's weight...woohoo! She's gained enough weight and is now back on the growth curve (3rd percentile), which is a true answer to prayers.

2. Because our daughter has gained weight, she is now big enough to move to a "big girl" car seat! This caused some rearranging in the back seat of the Tahoe!

3. Because our daughter is no longer in the car carrier, she got to sit in a real high chair at a restaurant for the first time!

4. Our daughter's first Thanksgiving was spent in Houston with both of our families. She was given LOTS of attention by LOTS of people who love her! We tried giving her the turkey and rice dinner (baby food jar), but she would have NOTHING to do with it. She shuddered with her first few bites, then refused to eat any more.

5. FORWARD PROGRESS! I don't think it can officially be called "crawling", but she is making forward progress and is heading for toys. Her brothers have no idea what the next few months will bring them as she heads for THEIR toys!!!

Jason and I are thankful for our family and friends who love us and have prayed for us and supported us this year. Thanksgiving has a new meaning for our family!

PHACE Family Conference

It's been a month of new learning for us! Jason and I were able to take our daughter to Milwaukee this month for the PHACE Family Conference. It was hosted by the Wisconsin Children's Hospital and was more than I could have ever imagined. There was not a cost to families for the conference, and the resources they provided to us were amazing! The 10-12 specialists there gave of their time to come and share with us. They were all incredibly kind to stick around and allow us to ask specific questions regarding our own children and their individual stories.

Some exciting things:

1. Our daughter's first plane ride...she did GREAT!

2. Some fun in a new city...we stayed one block of off Lake Michigan and took some time to eat dinner at Miller Park (wouldn't you know it, the Brewers were playing the Astros in Houston while we were there)!

3. Great weather...on the warmest day, the high was 68 degrees!

Some things we learned:

1. Doctors from around the world continue to collaborate regularly to create medical protocols to help families who have children with PHACE Syndrome. There is LOTS of research going on right now and 5 new articles have been published this year in medical journals.

2. Genetics studies are happening right now. The three of us were able to donate blood and be a part!

3. Through conversation with a specialist, we were encouraged to begin using our daughter's Timolol eye drop on her nose and lips to hopefully reduce the redness in these areas. This idea had never crossed our minds.

4. We are truly blessed to have the medical team who has been collaborating to care for our daughter for the last 8 months. We heard stories from families who have to truly fight for care for their children. Because of this team, our daughter began receiving care before she was three weeks old. We will never know how severe her hemangioma could have grown without this level of care!

5. Grammy & Grampy have enough energy to spend 5 days with the boys while we're out of town!

This photo was taken of the conference participants. The older children are sitting on the front row and many of the babies are sitting in their mother's laps on row two.

She's growing up!

Our daughter is so much fun these days. She watches her older brothers in amazement and loves the attention they give her. She coos at her daddy and tries to match pitch with us as we talk to her. She's also been learning to play with her tongue and make raspberry sounds which makes us laugh! This weekend, we worked on "mama, dada, and buba" with no luck, but it sure is fun watching her study our mouth as we make these sounds over and over and over. It won't be long before she's talking in sentences.

This weekend I was finally able to pack away her 0-3 month clothes. She fits pretty well in the 3-6 month clothes, so I decided it was time! I didn't cry (which is a miracle)...maybe it's because God gave me so much time with her being so tiny!

Tonight she rolled all over her room chasing her brother. She even got stuck under her baby bed. I can't wait to see the fun tricks she has in store for us! She truly keeps us entertained!

Prayer Warriors

For over five months we've been encouraged by friends and family members that they are praying for our daughter. We have received cards, messages on Facebook, phone calls and emails. Though I've heard these words of encouragement time and time again, last weekend I actually got to see some of these prayer warriors "with skin on"!

To celebrate the long Fourth of July weekend, we made a very quick trip to Oklahoma and Missouri to visit family members who had not yet met our daughter. It was very important to me that we make this trip now that our daughter is healthy enough to be loved-on by other people. I wanted them to get to enjoy her snuggles as much as we do! I also wanted my boys to be able to make some memories with these family members who love them so much!

Our first stop was Ada, Oklahoma where she got to meet one of her great-grandfathers. Though this stop was for only a few hours, we had a great visit (and some yummy Mexican food)!

Our next stop was Springfield, Missouri where she got to meet aunts, uncles, cousins and another set of great-grandparents. We were in Springfield for July 4th and were able to attend a patriotic worship service at their home church. Memaw was excited to get to introduce us to her friends in her Sunday School class. I am convinced that every great-grandparent is proud of their kiddos, but this "show-off" was different. I quickly realized that the reason she wanted us to meet these friends is because they have been praying for us in very specific ways. She wanted them to be able to put a face with our names and see how good our daughter looks.

These intercessors called us by name and reminded us of specific ways they're praying for us. I was overwhelmed with emotion realizing that this handfull of people represents the many people who I don't even know who have whispered prayers on our behalf.

I looked up a definition for "Intercessory Prayer" tonight and here's what I found: Intercessory prayer is prayer for others. An intercessor is one who takes the place of another or pleads another's case. One study Bible defines intercession as "holy, believing, persevering prayer whereby someone pleads with God on behalf of another or others who desperately need God's intervention."

I am thankful for the many prayer warriors who take time out of their day to lift my daughter/family up in prayer. God's people are good!

Not the "twinkle" I was expecting

When I woke up this morning, I was full of joy. Today was to be the first day our daughter would attend New Hope (our church home). Because of some of the medications she's been taking, her immune system has been compromised, but with a change in medication and another round of routine inoculations, the doctors declared her healthy enough to begin getting out and about.

The last four and a half months have brought many changes to our lives, but one of the changes that has impacted me the most was my inability to get to attend worship with my family. Because of Jason's obligations at the church each Sunday (he's on staff there), it was not an option for him to stay home while I attended worship. Each week I would get up with the boys, get them around for church and then the three of them would head off while I stayed home taking care of our daughter. I loved the precious hours of quiet when she and I could take a mid-morning nap on my bed while watching portions of the Great Hills worship service on TV, but I missed corporate worship.

So today would be the day. I posted a verse on Facebook this morning that captured my anticipation: "A twinkle in the eye means joy in the heart, and good news makes you feel fit as a fiddle. (Proverbs 15:30)" I really thought that I would "twinkle" all day...but that was not to be the case.

The plan for the morning was for me to wake up and help get the boys out the door for church nice and early so that they could attend their Hope Group Class (Sunday School), and then I would meet them in time for the late worship service. Things went very smoothly. They were out the door in time, my daughter and I got to steal a few quiet minutes together before getting ourselves ready to go. I pondered over which bow would be the cutest for her debut. And we were off at just the time I'd planned.

On the way to church I turned on KLOVE and heard a few songs of praise that brought tears to my eyes. I was so thankful to be heading to worship and whispered aloud a prayer of thanksgiving. As I parked the car and began walking into church carrying our daughter in her car carrier, more tears. Then, all it took was a hug from a sweet friend who was happy to see us, and the tears began to flow. They wouldn't stop for over an hour. I was not anticipating the many emotions that were consuming my heart...JOY to be in worship, LOVE for my friends that I haven't seen in over four months, PRIDE for my new baby, and FEAR...this was the one I didn't expect. I was afraid! Not for the germs that could make our daughter sick, but for the second looks, comments and questions that would arise. My heart hurts! I don't want my daughter to become a spectacle because she doesn't look the same as the other babies.

I know that these feelings are perfectly normal. I know that my church family loves and supports us more than I will ever be able to comprehend. But I also know that these second looks, comments and questions about our daughter are the new "normal" for us. I know that my heart will find comfort in the kindness of those who love us, but I need to also be constantly prepared for those who say or do things that are hurtful. I know that my boys are watching me to see how I react to these times and that they will take their cues from me.

The final song in our music set today was "I Surrender All". (How does God always know just the song we'll need at just the right time?) I had to just sit back and listen through the first three verses because my heart was not truly ready to surrender. But, by the last verse, the tears were flowing as I once again surrendered all to Him!

All to Jesus I surrender

Lord I give [My Daughter] to Thee

Fill me with Thy love and power

Let Thy blessing fall on me!

I Surrender All!!!

My precious children after our first day together at church (and a Burger King lunch...note the crown!).

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!

First Time Blogger

Many of our friends and family members have started blogs to keep people informed about events happening in their lives, so I thought we'd start one too!