Dermatology and Ophthalmology Update

Where did the summer go?!

Rose has been receiving treatment for about 3 months now and the results have been amazing. Take a look! This week we had a follow-up with Dermatology and all continues to look good. Rose had her first appointment with Ophthalmology and good news again! We were concerned that the hemangioma had grown into her eye, obstructing vision and that the swelling which previously had caused the eyelid to close had caused damage to her vision. But today, the eyelid was back to normal and hadn't caused any vision problems. She has perfect eyesight! Our schedule is down to once a month Dermatology appointments :) I'm feeling wonderful about the results and having a slower schedule for Rose. 

Beginning of Summer
End of Summer

Real Imprints

Thank you Real Imprints for sharing Rose's story! I sure love following your beautiful blog :)

Real Imprints

Real Imprints (Click on the link to see Rose's story)

Audiology and ENT

It's been a busy day!

Our first appointment was for Rose to have a hearing test. I thought I was well prepared to entertain the 4 year old sibling (good friends already watching the older two), but of course I was wrong. He found it very entertaining to turn the sound all the way up on a game during the test. I didn't know if we'd make it through. But seriously- what was I thinking bringing a 4 year old to an appointment that needed it to be very quiet?! Lesson learned. 

Next we had her ENT follow-up (ear, nose, throat). We got the results of the hearing test and everything is normal! Even with her hemangioma closing part of the opening of her ear, she is still hearing and it should not cause any speech or development delays. Awesome! Rose had a camera go down her delicate nostril into her airway. There was some concern that because she has a hemangioma on her gums and a small dot on her chin, it could mean more in her throat/esophagus. But the camera showed nothing! She was clear. We will have another follow-up in 3 months for another hearing test. 

Our last appointment for the day was with our favorite office-dermatology! This office really knows how to help a struggling mom and lift spirits! Rose has grown some more and will be increasing her oral meds, but otherwise doing great! We are almost done with all her initial screenings, with the MRI appointments left. Look at this little girl after such a busy day!



Reality Check and Good News!

I just realized we have 7 appointments scheduled for Rose in July! (yikes, yeesh, uggghhhh) If you know me... I dread appointments. Its exhausting-- getting there on time, being prepared with the "Mary Poppins" of diaper bags, as well as dropping off siblings or taking them with you-- all around, a lot of work. Not to mention sometimes emotionally draining. Today was the first of all our appointments with the Cardiologist. 

Rose's EKG with the dermatologist showed that one side of her heart was larger than the other side. So we had a follow-up today. After a few doctors examining her and the ultrasound, we got a call back that ALL is normal! She just has an innocent heart murmur. Such good news because that is our last appointment with them. 

On our way out, the front desk receptionist gave Rose a special gift that some sweet "angel" had hand-made for all the little heart patients. I've been doing those kinds of projects for hospitals since I was a teen with my church. I never thought I'd be on the receiving end of one-- how comforting and special such a small act of kindness can bring. Thank you to all of those sweet angels out there! 




Beta-Blocker

Here is Rose at her second appointment. She's been on oral medication for 11 days, as well as essential oils applied 3 or 4 times daily for four months now. Her dosage has increased three times. No apparent side affects so far. We just keep her well fed to make sure her blood sugar and blood pressure don't drop. Can you see the difference from her last appointment?!!!!






EKG

We received a call back today that the EKG showed some changes and will need further investigation with a cardiologist. Prayers would be appreciated that everything will come back clear with the cardiologist. 

First Dermatologist Appointment

We scheduled it in March and the long wait is over.



What we learned at her appointment: 

Because her hemangioma is large and a combination of surface and deep as well as affecting her hearing and eyesight, she will be taking a beta blocker oral medication. Results should start to show within the first 6 weeks. She will be on medication for a year. Today she had to have an EKG to check her heart before she started the medication. She also had a picture taken digitally that creates a 3-D image of her hemangioma to document her journey. Each month she will be seeing her dermatologist, an ENT, and an eye specialist. She will also be having an MRI done to make sure that not only is her brain clear of the hemangioma, but also that the cells do not act like the hemangioma, growing rapidly and abnormally. 


This was a struggle. Finally, everyone left the room so I could nurse her till she went to sleep. I prayed like crazy that she would have a really deep sleep so we could do her EKG without medication or having to go to another appointment with a cardiologist. It worked!! She slept soundly. Another miracle to this angel baby.