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!

Online Budgeting

I have tried many, many budgeting plans in the past. When it was just me and Eric and one child, it was pretty easy to use physical envelopes like Larry Burkett recommended. I would pull out all our spending money in the right bills and put them in the correct envelopes. If I went to the Base Exchange and bought a shirt and some curtains I would run it through in 2 transactions and pay for one out of the clothing envelope and one out of the household envelope. It worked, but was time consuming.

Then, ten years ago, we adopted two children and had another one all in a four month span. Did I mention that Eric was deployed for much of the 18 months following our growth from one to four children?! It was also the year of the rabbit in Japan (where we were living at the time), but that is beyond the point.

At that time, my budgeting pretty much fell to the wayside. I had much more important things to do. Like making sure I didn't lose any children while they scaled the piles of clean laundry waiting to be folded. And small things like feeding them and stuff.

Since then we have gone to paying for everything by debit card, which only additionally complicated things. Oh yeah, and I have had 5 more children.

So for the past 10 years I have struggled to find an easy budgeting system which would allow me to keep track of what I spend while not taking HOURS each week. Because uninterrupted quiet only comes in 3 minutes at a time around here, and I certainly don't want it to be spent thinking about money.

I have found a really easy system! I tried it before, but they didn't have our bank online. Now they do, and it is working!!! Go check out Mvelopes and see what you think! It hooks up to your bank account and downloads all the transactions. You set up your budget and divide the money in your accounts into the different categories. When you have a transaction from the gas station, you can just drag it over to the "Gas" envelope, and the money is subtracted from the account. They have a quick tour you can take to see the way it works.

If your bank is connected to this program, it is SO EASY. This morning it took me 2 minutes to drag the 9 new transactions to the appropriate "envelopes." I quickly saw that we only have $3 left for food, but that we have a LOT extra in gas. It has also let me save up money into categories for school supplies, car registration, and other things that I was always spending all the money without noticing. Now we are not spending all our money every month, I am just spending what is in our categories.

I do still go online with our bank and balance our checkbook every few days to a week. That helps a lot too, since it never seemed to balance when I waited a whole month.

Proverbs 13:11 - Dishonest money dwindles away, but he who gathers money little by little makes it grow.

There is a cost to the mvelopes program ($10 - $12 a month, I think), but the first month is free, so you can try it and see if it will work for you. I know we are saving much more than we are paying for the service. I also know that I feel a lot more in control of where our money is going, and that peace is priceless.

Go check it out. Also check out Biblical Womanhood's Frugal Fridays for more frugal ideas. Even though the price of gas is down, we can all use to save all the money we can.

I'm just a Rebel Wanna - Be

I went from a friend's blog to My Charming Kids and discovered the neatest idea... for a $10 donation which will be split between three charities - one for bereavement when a baby you are carrying has a terminal diagnosis, and two which are for adoption grants. In exchange for that donation, you can be entered in a drawing for a totally cool camera which I have been saving up for for over a year. And I have nowhere near the money saved yet.

With Christmas coming, we spend so much for our presents, and food, and everything else. I think that we should find extra charities (or ministries within the church) to give to. Our pastor has encouraged everyone in our church to give a tenth of what we spend on Christmas to missions. $10 is no where near that, is it?

I don't think that giving gifts is bad. I love to give my family gifts they will enjoy. But are we also giving to those who desperately need us? Are we giving our lives for those who are less fortunate?

I'm off my soapbox now. And I consider it a privilege to help out. Whether I win a camera or not. But I won't be opposed to prayers that I win, OK?! ;)

Scrapbooking for a large family

I am not sure if I have shared my scrapbooking technique with you all or not. I have friends who do loads of wonderful scrapbooks, both digital and real. I love looking at them. I think it would be fun to do them. But I get bogged down in the details. I have done some digital scrapbooking, and this blog works as a scrapbook, really, but formally I have not done much. I'm way too busy wiping noses to scrap about them.

So at the end of last year, I had a great idea. For 8 cents a print at york, I can get all my favorite photos from the year printed out. Then I go to Stuff Mart and buy a photo album. I then stick all the photos in the album. Sometimes I write notes, mostly I just plain get them in.

So there you have it! My method of scrapbooking. Safe, easy, relatively cheap, and no scissors or stickers to lose.

A friend of mine said that this year she has done a photo book - a couple pages for each month. That is a pretty good idea too. It wouldn't take long, and you could then have a book printed for less than $15 plus shipping. Can't beat that!

It's what Works For Me! Go to Rocks in my Dryer to find out some more things which work!

Some More Thoughts on Christmas

Christmas... Peterson Style

With the Christmas season full on, things get a little crazy. I think that a special season like we have just shows the imbalance our society has every day. It's just my opinion, but I think our human nature is too prone to do everything to excess. Except serve God.

A few years ago we started looking for ways to change the emphasis of Christmas from GETTING to GIVING. Can you imagine how long it takes 9 children to open all the gifts on Christmas morning? Gifts aren't bad. I love giving gifts. I love receiving gifts. I love seeing my children enjoy gifts. But I hate the greediness which comes at this time of year.

We were already moving toward this train of thought two years ago when I went into labor shortly after church on Christmas eve. Interestingly enough, Mercy Noelle joined our family at 12:57 ET on Christmas Day (the time zone of the hospital, and therefore her birthday), but at 11:57 CT (the time zone we live in.)

So now we had a child with a birthday on Christmas day, we had the Christ child's birthday to celebrate, and we wanted to get away from the greediness of getting gifts being the emphasis. Sound like an impossibility?

So here's the traditions we have come up with... see what you think of them. We love them.

On Christmas Eve we celebrate the Christ Child's birth. We go to church for some acapella carols and a candlelight service. It is the children's favorite service of the year. This year I am going to add a birthday cake and ice cream when we get home, and a special breakfast. We also use our Nativity Set to tell the story of Christ's birth, with flashlights working as spotlights.

Christmas day is Mercy's birthday. She is only going to be two this year, so we will just do gifts and cake. As she gets older she will be able to pick her favorite meals to eat also. We do have friends over for a late afternoon dinner and usually the helicopter crew flies out to join us. I can't see that people should be lonely for Christmas. So Mercy is the only one of our children to get birthday parties with people outside of the family each year. How's that for lucky?!

No, we don't do gifts on Christmas day. We start gift giving and opening on the days following Christmas. Each family member gets their own day. So we open the grandparent's gifts on one day. Aunts and Uncle's gifts another. We assign a couple children per day on the days after. This enables all the children to get lots of attention, photos, and love on the days they GIVE their gifts, not on getting them. On Emma's day to give gifts, she gets a photo with each of her brothers and sisters, along with what she gave them. If you were the scrapbooking type (I'd like to be, but am not) you could make a scrapbook page for each child on the day they GIVE them.

We divide things up between the 6 days from the 26th to the 31st, with Eric's and my gifts (usually we spend between $30 and $50 per child... this year will be closer to the lower amount. Less if we can find nice gifts cheaper) being given on New Year's Eve.

Then it's New Year's Day. The children LOVE our New Year's Day traditions. We usually buy a couple games for them to open that day, and we play games and eat junk food all day. They are allowed to each pick their two favorite snack foods. We start the morning with donuts and cinnamon rolls. Warming them up is the only cooking I do all day. We have deli lunch meat (a treat for us all) and rolls for lunch. We eat junk the whole day. They love it.

I know that many of you have family nearby you need to work into the holiday schedule, and you share children, so things like this are not possible. But I encourage you to take a look at your traditions, think outside the box, and figure out how to put the emphasis on Christ and giving rather than on receiving a long laundry list of way overpriced gifts.

Now if I could just find the time to put up a tree and write a Christmas letter I'll be golden.

Computers and Small Towns

In case you are new around here, I live in a VERY small town. There are only 2000 people in the town. It is one mile (literally) from entering to leaving. Usually people know I am pregnant before I know it. (Although the current rumor that I am pregnant again is NOT true.)

Usually I LOVE living here. But it has been an adjustment. Like trying to get things fixed. You better not need to get into a hardware store after noon on a Saturday. It'll be closed. Start those house projects early so you know what you need to buy at the last minute. A friend of mine has had her van in the shop for over a month and they have yet to START on it. And I dropped my sick computer off at the computer doctor's office last TUESDAY and they still have yet to be in to finish working on it. Sigh.

So I hijacked Angela's computer, but it doesn't have e-mail. If you have tried to reach me, I didn't get it. Please e-mail me at peterson dot carri at gmail dot com until I get my old computer set back up. Boy do I miss that thing!

So - bottom line - small towns are great. Until you need something. Then they move v e r y s l o w l y .