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!

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!

Typically Developing!

Our daughter had an appointment earlier this week with her pediatrician to follow up on her weight gain, head size and length. Good news...she's staying on the curve! Her head size and length are both in the 10th percentile and her weight is in the 5th percentile...but she's stable! Though she is 5 months old and is still wearing size 0-3 month clothes, she made the progress that you would expect from any other child. The pediatrician deemed her "typically developing"...HOORAY! If this growth trend continues, she's projected to be a little over five foot tall and just over 100 lbs as an adult...she certainly did not get these petite genes from her 5'11" mother!

We have another round of tests (MRI/MRA) later in July and will then see all of our specialists again (ophthalmologist, dermatologist, neurologist and pediatrician). We will repeat this cycle in October with a CT Angiogram. We are trusting that our daughter looks as good on the inside as she does on the outside!

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!).

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!

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!

Not what we expected

During a prenatal ultrasound, we first found out that our daughter had some enlarged ventricles in her brain. The doctors indicated that they would check to make sure her head didn't measure abnormally large after birth which might indicate water on the brain. We were told this would be monitored very regularly. We never thought that her head size would ever measure small...but that's what is happening.

When our daughter was born, her head size was in the 50th percentile. Now, at three months, her head size is measuring lower than the 25th percentile. Our pediatrician says that it could be due to the medications that our daughter has been taking for the last couple or months. She also wonders if her carotid artery abnormalities may have anything to do with it. So, she wants to check into it further to make sure it's not due to something serious.

Our pediatrician called our daughter's neurologist. They discussed the milestones that our daughter has reached already (rolling over, laughing, tracking objects with her eyes, etc). Because her development seems typical, the neurologist did not think it was necessary to see her immediately. We already have an appointment with him at the end of the month, and he thought it would be ok to wait and see our daughter then.

Please join us as we celebrate the developmental milestones that our daughter is meeting on a regular basis!!! Please also pray that the doctors will have wisdom in the coming weeks to order any further tests that might help to determine the reason for her head to be so small.