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.