Mercy Medical Appointments for January

I am back, and (sort of) recovered from our very long trip to Cinci on Tuesday. I had to be driving at 5 in the morning, and I didn't get home until after 7:30. That is a VERY long day for this homeschool mama who doesn't have to move very fast in the mornings. Forget wondering how I do "it" with 9 children, I don't know how anyone gets their children on the bus by 6:30 in the morning.

Anyway- we were off on time. I take an older child each time to help me with Mercy in the car, etc. So this time it was Emma. She thought it was way cool to be getting up at 4:40 in the morning. I wasn't so thrilled since I had woken up to feed Bethany at 3:30 and not gotten to sleep again.

We had some pretty bad weather on the way up, and things were pretty slow. So I arrived to our first appointment a little late. But it didn't matter since the eye doctor had us wait almost two hours anyway. Luckily, since they are a children's hospital, the waiting rooms are really fun.

All was well with the Contact Lense Guy. We have found a lense which works well. It is staying in her eye, and seems comfortable. So he was pleased and said we should start patching her other eye as much as possible. This forces the brain to use the bad eye. Yesterday she was able to wear it for several hours. The hope is that maybe she will not need glasses forever. We'll see.

Then we had another hearing test. These are repeated every two months or so, to follow her development in the left ear. This one in specific was to be a baseline before putting a tube in her ear next week to see if that alleviated any blockage enough to improve her hearing. They were able to do a test she had not been able to do before (since she is getting older) which indicated that her hearing loss is not merely a blockage (the hemangioma blocking the ear canal), but that the hearing loss is permanent damage to the nerve. This is not really surprising as the hemangioma wraps around the nerve. So on the bad side, she will only have partial hearing in the left ear, but on the good side, we found it out before sedating her unnecessarily next week for a tube which would not make a difference.

Since she hears fully on the right side, her speech is developing as expected, so this will in no way pose any problems except maybe we will have to be sure we are not talking to her on the left side. No big deal, really, in the big scheme of things. It is too early to be able to tell if a hearing aid would help, and she currently doesn't have enough of her ear to even wear one anyway, so that will have to be explored when she is older, and the plastic surgeries are done to restore her ear.

The hemangioma doctor was really pleased with the way the hemangioma looked. We saw one who had not seen her for three months (not our primary doctor), and he felt that the hemangioma was smaller. (You were right, Oma and Papa Pete!) He said to try to reduce the prednisone from 0.8 ml. a day to 0.7 ml a day. The surgeries to start repairing her face are thought to start sometime in the spring, and they would like for her to be off the prednisone before that starts. He did say that we will probably see some growth again as we wean off the prednisone, but that will go back down again usually. I have so enjoyed the past few months of not having it grow. I will be so glad to have the whole thing done sometime in the future.

Since the ear tube surgery was canceled, we don't have to go to Cinci again until next month when we will go on Monday afternoon for a hearing test, (I think we need to schedule an eye appointment too to see how the patching is helping her...) then on Tuesday for an MRI, and to see the hemangioma and ENT doctors again.

So that is where we stand as of January on the Mercy front! Have a great day!

The Growth of a Hemangioma and the Things I Have Learned

[This is reprinted from my old website. Enjoy the lessons I have learned!]

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I often write about my Sweet Little Mercy... let me fill you in if you are a newer reader. She was a beautiful Christmas Gift... arriving just after midnight on Christmas morning. When she was born she had what looked to us like a bruise along her left temple. The pediatrician told us it was a port wine stain. Here is a photo of when we brought her home from the hospital...



Following medical advice (thinking it was a port wine stain, and there was nothing we could do about it), we watched it grow (Jan. 3),



and grow (Jan 22),





and grow (March 5).




In March, we got an appointment with a dermatologist, who recommended laser surgery. They told us she would not be at all uncomfortable, which was a bold faced lie. Four people held her down for the laser, while she was screaming bloody murder. It obviously hurt her, and after this I refused to return to that doctor. We went to a pediatric dermatologist in Louisville until she was a year old.

(April 15 - on a high dose of prednisone, resulting in the bloated cheeks. You can see the burns from the laser. These later ulcerated, got infected, and resulted in some terrible scarring.)


(June 2)


When she turned a year, and the hemangioma was still growing, we moved from having her care in Louisville, to getting her seen monthly by a specialist in Cincinnati. We are so thrilled by Doctor Adams and her staff.

(Jan. 2008)



I tell you all that to tell you what I have learned. Mercy is a beautiful child. Everyone who sees her agrees about this. This week I realized that when I look at Mercy, I don't see the hemangioma... I see MERCY! I see her sweetness, and her smile. I see how adorable she is, and see the potential for a wonderfully full life.



And I realized that is how God sees us. When he looks at us he looks past the awful things we do - past the growths which deform us, and make us less than perfect, and HE LOVES US! He sees us as we are meant to be. As He designed us. He doesn't look at our horrible parts... He sees the sweetness He put in us!


If you are like me, you wonder sometimes how in the world the God who created the universe could even care about you. When there are so many people out there who are so much better and more beautiful then I am, why does he bother about me? But He sees the me He knows I can be. The one I was designed to be if I could just get past my own selfishness and greed. He takes my sins, forgives them, and seperates us as far as the east is from the west! He can't see them anymore.



Mercy's Hemangioma is still growing. If we were to just look at the hemangioma, it would seem that she is just getting uglier. Her face is not "normal". People stare when we go places. But we see past that, to the beauty we know is there. So does God. Be encouraged, my friends, He loves you more than we love Mercy. And while we hope the doctors accomplish what they claim they can do - make Mercy's face look normal someday - we would still love her even if they couldn't. She would still be beautiful to us because she is OURS.



You are the same. God loves you because YOU ARE HIS. He created you! Let Him love you. Let Him forgive you. Forgive yourself. Forgive the others who only look at your "ugliness" and know that God sees you how you can someday be.

Please Help Us Get Research Funding

Most of you know, but some of you are new at following my blog. My sweet Mercy (who will be 2 on Christmas Day) has a large facial hemangioma we have been working to get under control for almost 2 years. Please read about it (and view the photos) here.

Mercy not only has the hemangioma, but also has some issue with her heart, and other minor things. Our prayer is that these will not effect her in a permanent manner. They have found that some of these children have varying vascular issues. You can read more about PHACE Syndrome here. A Google Search will get you a lot of information.

Unfortunately there is not a lot of research being done on PHACE Association. This is resulting in grave misunderstanding among the medical community on what causes this, and what the treatment protocol should be.

Due to this, there is currently a petition going on to try to increase funding for research into PHACE Association. Would you mind signing it for my Mercy's sake? We would really appreciate it. Head over here to sign, if you would like to. I am also posting the whole petition here so you can read it first.

Thank you for your help!

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To: National Institute of Health

To: The National Institute of Health
Stephen C. Groft, Pharm.D., Director of Office of rare Diseases, Office of Rare Diseases
National Institutes of Health, 6100 Executive Boulevard, Room 3B01, MSC 7518
Bethesda, Maryland 20892-7518NCI

Elizabeth Read-Connole, Ph.D.
NCI Representative to Office of Rare Diseases Committee Cancer Etiology
Branch, Division of Cancer Biology National Cancer Institute, NIH 6130
Executive

John E. Niederhuber, M.D., Director of the National Cancer Institute (NCI).
NCI Plaza North Room 5016 Bethesda, MD 20892-7398

Sonia I. Skarlatos, Ph.D., FAHA, Acting Director, Division of Cardiovascular Diseases, NHLBI Gene Therapy Coordinator, National Heart, Lung and Blood Institute

Rashmi Gopal-Srivastava, Ph.D.,Office of Rare Diseases, National Institutes of Health 6100 Executive Boulevard, 3B-01, Bethesda, Maryland 20892-7518

J. Fernando Arena, M.D., Ph.D., Division of Clinical and Population Based Studies Center for Scientific, Review, National Institutes of Health
6701 Rockledge Drive Room 3135, MSC 7770 Bethesda, MD 20892-7770

The Hemangioma Investigators Group has formed a consortium to address the need for research into vascular anomalies and PHACE Syndrome. This petition is in reference to RFA for the Vascular Anomalies Rare Disease Clinical Research Network

As a community of patients and families and friends who are living with vascular anomalies/PHACE Syndrome we are appealing to you to consider this application favorably. There is much to be learned about these diseases and the only way that will be accomplished is through research and trials.




While vascular anomalies are not new, the diagnosis of PHACE Syndrome was first reported in 1996. PHACE Syndrome is a rare disorder that requires the collaboration of medical disciplines including, cardiology, dermatology, hematology, oncology neurology, radiology, and surgery. There is a wide spectrum of symptoms and complications involved in vascular anomalies/PHACE Syndrome. PHACE Syndrome and the entire spectrum of vascular anomalies have been inappropriately diagnosed and managed due to an inability of the medical disciplines to collaborate on diagnosis and treatment.

Since the first reports of PHACE Syndrome appeared in the literature, there has been an increased interest by physicians and scientist. Medical Institutions across the country have recognized the need for multidisciplinary teams to manage patients and have supported research targeted at developing treatments. Unfortunately there is no funding for vascular anomaly research. The lack of funding for vascular anomalies has limited research and this is directly affecting how the growing number of diagnosed patients are managed each year. Patients and families are left with little information or understanding of the long term implications and treatments of PHACE Syndrome and other vascular anomalies.

NIH Funding for the proposed consortium would help provide desperately needed knowledge and understanding to disorders filled with so many unknowns. Our hope is that by finding solutions to complex vascular anomalies like PHACE Syndrome, there will be applicable treatments and insight into the more common vascular anomalies like hemangioma and vascular malformations.

Our patient/family led groups as well as patient advocacy organizations have been pleased with the representation within this consortium. There are doctors from many different specialties and many different medical institutions working together for one common goal. These dedicated researchers and scientists have been involved in every aspect of managing vascular anomalies/PHACE syndrome and are committed to moving forward. They have created an innovative proposal and our groups enthusiastically approve of their efforts.

By signing this petition we, as a community of patients, family members and friends show our support for requested funding by the NIH.

Sincerely,

The Undersigned

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Again, here is the place to sign. Thanks for taking the couple minutes to do this for us!