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!

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!

Two pounds

Well, it worked. Our intervention of extra calories really worked. Our daughter had a weight check with her pediatrician this morning and in the last two weeks she's gained almost two pounds. She's still in the "less than third percentile" group, but we've been asked to keep up the intervention and bring her back in a couple of weeks to see if she continues to gain weight with this increased caloric intake! So, the next time you see her, you may not even recognize her!!!

Our daughter is pretty precious these days. Some of her favorite things include kisses on the neck, laughing at her brothers, playing peekaboo, and squealing at our new kitten. She is learning to drink from a cup and eat finger foods and is even pulling herself up to standing with dad's help. We are having so much fun watching her personality develop every day!

Calories! Calories! Calories!

Today at our daughter's 9 month appointment (can you believe she's 9 months old?!?), we were again encouraged to pump her full of calories. She remains in the less than 3rd percentile for her weight, and even lost weight in the last four weeks. She currently weighs only 13 lbs, 13 oz.

SOOOOOO...We're adding formula to her cereal for extra calories. We're feeding her cereal with every meal for extra calories. We're even adding an extra bottle to her day for extra calories. Our pediatrician is determined that our daughter will gain some weight in the next couple of weeks. We need to do all that we can to ensure our tiny little girl is as healthy as possible!

On another note, our recent appointments with her dermatologist and ophthalmologist have been very positive. Both specialists are encouraged with our daughter's development. We will have another round of tests and visit to the specialists in December.

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.