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.

Blessed!

I've been reminded this weekend how lucky Jason and I are to be the parents of three precious children.

Thank you God for our oldest son. We are constantly amazed at his ability to reason and understand. I am thankful for his sensitive spirit and caring nature. He is a sports fanatic and will talk baseball with anyone who will listen! He is a true treasure!

Thank you God for our middle child who makes us laugh. His strong will lets us know that he will one day be a leader. He is snuggly and sneaks in extra kisses and hugs every night at bed time! His smile can turn any frown upside down!

Thank you God for our baby girl. We love watching her learn new things like rolling over and sitting up. Her squeals for attention show us that she loves to be in the limelight. She is a gift who reminds me each day of God's love for us.

I love being a mom and can't wait to see what God has in store for these precious children!!!

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!

A round of 6 month appointments

The last two weeks were filled with appointments with all of our daughter's specialists to discuss the MRI results from their perspective. Here is a snippet of what we learned:

Ophthalmologist: The hemangiomas around our daughter's left eye are shrinking. We learned that the orbit hemangiomas are around the top part of the eye including the eye lid which is why it swelled closed so quickly in her first few weeks of life with the growth of the hemangioma. Our daughter seems to be using both eyes equally which leads us to believe her vision is good.

Dermatologist: The color of the birthmark on our daughter's face continues to fade. The hemangioma on the back of her neck is unchanged, all other hemangiomas have decreased in size.

Pediatrician: Our daughter continues to measure small in her head size and length (10th percentile). Her weight continues to fall off of the growth curve (less than 3rd percentile).

Neurologist: Our daughter seems to be developing typically. She is meeting her milestones as expected. Her brain is developing myelin which shows that it is "working".

The best news of all is that all of the doctors agree that our daughter is healthy enough that her follow-up CT Angiogram that was originally scheduled for October has been pushed back to December. Everyone is encouraged by all that they've seen in the last couple of weeks.

Prayers are working!