Timolol

This week our daughter had an appointment with her ophthalmologist. The doctor was pleased with what she observed through her tests. Our daughter seems to be tracking objects well and using both eyes equally. We were asked to continue patching her good eye for about an hour a day so that her left eye can have additional practice. Soon, our daughter will be old enough that she can tear the patch off of her eye, so the more patching we can do now, the better!

During our appointment, I discussed the use of a drug called Timolol with the ophthalmologist. (Our dermotologist mentioned Timolol to me as an option for the first time last week.) This eye drop is used for glaucoma patients, but is the same type of drug (beta-blocker) as the Propranolol (blood pressure medication) that our daughter is taking orally. The thought is that by using the eye drop twice a day, the hemangioma around the eye would be encouraged to reduce in size...kind of like an extra boost. There is some very positive research regarding this type of medication in other patients with PHACE Syndrome. Applying an eye drop for an infant on Propranolol is a little complicated and will take both parents in order to be successful. We can also rub the serum directly on her face which may be able to reach some of the hemangiomas close to the surface of her skin.

We tried the Timolol for the first time Tuesday night. It was a challenge, but one tiny drop did get in her eye. We also rubbed some extra drops on the pink places on her face. The next morning we noticed increased swelling in her left eye. We were suspicious that there might be some type of allergic reaction. Unfortunately, almost 48 hours later, she's still pretty swollen around the eye and on the back of her neck. After talking to the doctors, the more likely scenario is that the growth of the hemangiomas is increasing rapidly. We will try another drop again tonight to see if we see a similar reaction.

If the hemangiomas really are growing again, we have the option of increasing our daughter's oral steroid again...we don't like this option because of how this drug compromises her immune system. We also have the option of doing additional steroid injections which is the outpatient surgery that she had in March. To complicate matters, my 12 week maternity leave is officially over tomorrow and I'm headed back to work on Monday. Our daughter still is not healthy enough to be around other children, so our mothers are coming from Houston to tag-team taking care of our daughter during the week. This schedule will continue through the month of May. I am grateful for the sacrifice our mothers are willing to make to support us!

Please pray that we make the best decision regarding next steps for our daughter's medical treatment. Please also pray for us as I go back to work next week. It will be a week of many tears as we all adjust to this new schedule!

Regression?

Our daughter had a follow-up appointment with her dermatologist on Monday. It's hard for me to believe it's been a month since we've seen him. I had such high hopes for this appointment. She's made such good progress and we've slowly been lowering her oral steroid dosage. I truly thought that the oral steroid which compromises her immune system would be completely stopped. Unfortunately, this was not the case.

It has been exactly a month since our daughter underwent the outpatient procedure where they injected steroid into her left eyelid, cheek and back of the neck. This medication typically lingers for 3-4 weeks. We are now at the end of that timeframe. The dermatologist noted that our daughter's left eye looked a little more puffy today than he remembered it looking the last time he saw her. He also noticed that her left cheek felt warm (which indicated additional blood flow to the area). He is very interested to see what her body will do now that the majority of the injected steroid is out of her system. He asked us to watch her very closely over the next week.

Because of these indicators, the dermatologist did not adjust our daughter's medications at all. She is still on Propranolol, Zantac and what he refers to as a "spit's worth" of the steroid, but he admitted that we may need to increase the oral steroid dosage again should the swelling return. He also talked to us about a topical medication called Timolol which is a beta-blocker like Propranolol, but in the form of a cream. This may be something we try in the near future but will most likely only benefit those hemangiomas that are closest to the surface of the skin.

So, for now, because our daughter will remain on the steroid, she will not be able to have the live Rotavirus vaccine. She will also continue to have a compromised immune system which means she shouldn't be around other children.

Thank you for your continued prayers for our daughter and our family!

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!