Mercy: Before and After

Many, many, many of you are interested in our sweet little Mercy... and finally the swelling is down enough to show some photos.

Here she is front on the night before the surgery.

And sideways, again the evening before the surgery.

One the way to Cincinnati she was so excited. She exclaimed, "Now I will look like Bizzy (one of her friends) and Bethany (her sister). "

My heart broke. I had hoped to be done with this before she realized how different she looked. I said, "Well, you will look just like Mercy. Which is the best thing for you to look like." I spent the rest of the day trying not to cry.

Then on the way home the next day, she caught sight of her swollen little face in a mirror of McDonald's and burst into tears. "He didn't take it away!" My heart shattered.

But now that the swelling is down (mostly... I am still hoping that some of the deepness that remains is swelling and not hemangioma), I am willing to post some photos of our little girl.

I am not sure why it is green... and really didn't have the time to figure it out... but here you can see the incisions. He basically did two face lifts... one to make her eyes symmetrical... and one to remove as much of the hemangioma in her cheek as possible. Also to take away as much of the scarring as possible.

Remember... Before...

And after...

It still looks rough, but you can see that a lot of the cheek scarring is removed. In this next photo you can tell there is still some swelling, but you can see it is better.

And you can see that the eyes are symmetrical.

With bangs and hair, very little will be able to be seen. As far as if this is as good as it gets, we have to wait and see about that also. Dr. Elluru will do a process this fall called a "Derm Abrasion", and then we just wait. Maybe it will be better. Maybe a better laser will be developed.

But for now I thank God we are here. I thank God that we got as much as we did. Because a year ago this is what Mercy looked like:

And this is today.

Just beautiful. No matter what scarring remains.

Mercy- 1 day Post Op.

Yesterday was a long, long day. All went well, but it was long.

Mercy went into surgery at 12:30. The "two hour" surgery lasted until 4. Dr. Elluru was able to get everything from near the cheek and ear, and cover all but less than 1/2 inch of the scarring. Once the swelling goes down, I think that area will look great.

At the temple/ eye, he was able to get the part that hung over the eyelid pull up so now the eyebrows are symmetrical. Most of the scarring remains, unfortunately, but he thinks that future procedures ("Derm Abrasion") will help make them less noticeable.

She was quite nauseous last night, but seems to have recovered today and is eating more. As long as she can keep down solids we will be released this morning. The swelling is also worse today. Once all that goes down I will update.

Thanks for praying! Keep them up. We still have a long way to go.

Cincinnati Update

I know several of you have been waiting to hear how our appointments in Cincinnati went. So here goes:

- Bethany - We had an echocardiogram and EKG for Beth first thing Tuesday morning. The cardiologist said that she does show some anomolies, but nothing concerning, and certainly nothing to cause him to think that cardiac issues are at the root of the breathing problems she is having. This is good and bad news. Good because her heart is fine. Bad because we still do not know what is going on.

- Mercy - Her appointment was GREAT. We are approaching a year on the propranalol for her hemangioma. I plan an in depth photo post in a couple weeks of where we have come from. I know many of you pray for her daily, and I appreciate each and every one of those prayers. She looks WONDERFUL. Dr. Adams said that we are ready to start talking dates for the plastic surgery. This is good news. In April we will see the whole team, and I anticipate we will look at when we can do the surgeries. FINALLY we are starting to really see the end of this phase in our lives.

It was harrowing driving in the snow, but we made it to the hospital and home safely. As for me, I'm ready for some global warming. Brrr...!

Mercy Medical Update... May 2009

We had a WONDERFUL series of tests/ appointments in Cincinnati early this week. On Monday we had an echocardiogram, EKG, and meeting with the cardiologist. He said she looks, "Fantastic." Her heart size is reducing, which we suspected as she has a lot more energy. He had not seen her hemangioma since we started the propranalol, and was amazed at the reduction of the mass.

The next morning we had an MRI, but we don't have the results yet. Then we went to do a blood test which shows whether her body is making whatever hormone the prednisone replaced for two years. We won't get the results for a week or so.

From there they did a scan of her spine to see about the bone density. Evidently long term prednisone use can reduce the bone density. These results came back PERFECT... as if she never used prednisone. This is a miracle.

Then we saw Dr. Adams (hemangioma), Dr. Azizkan (head of surgery), and Dr. Elluru (ENT). They were all thrilled with her progress. She has an ear infection in the bad ear, so we have antibiotics. We also increased the propranalol, since she is doing so well cardiac wise.

AND!!! We don't have to return for 6 WEEKS! We have NEVER had a 6 week break from doctor's appointments. In this busy time of year, I am thankful to not have to go to Cincinnati!

In other Petersonclan news, Josiah fell off a slide at the park and hurt his foot. It is evidently not broken, but he is in bad enough pain for it to be. So he is out of commission. Lucky him... he now has no excuse to not know the Bible verses for the week. ;)

Off to make strawberry jam and weed the garden. Have a great day!

Around the Farm

We have been working hard in our garden, but things are progressing on the rest of the farm too...

Namely with our 21 new chicks. They are really cute. Here are some of the photos of them.





Josiah is in love with these "naked neck" chickens. He thinks they are the cutest things he's ever seen. I think they are rather ugly. But I'll love the eggs next year. ;)



One is named Vladimir. The other is Poof-in. Get it?




Here are some ADORABLE Mercy photos. She is really so cute. The medication for her hemangioma has helped her heart so much that she is obviously feeling much better. She has a lot more energy and is growing fast.



Doesn't she look just like Boo from Monster's Inc.?



Here we told her to show us her hemangioma... she really has no clue where it is no matter how many times we tell her! Haha.



Look how light it's getting!



That's all for this weekend on the farm. Have a great weekend!

Mercy Update 4/1/09

I don't have any photos today, but Mercy is looking great. Her face is almost totally flat now. Watching this thing go away is one of the most amazing things I have ever seen. To see it go down when we have watched it grow for two years just defies explanation. It is a wonderful sight.

Even the doctors were amazed... Dr. Adams walked in the room and said, "Oh Wow. She looks wonderful!" That's a big deal to me... even the doctors see the progress. They are cautiously optimistic. This is such an unknown... how long do we keep her on the propranalol? What dosage? What will happen when we take her off? Will it grow back? These are all things that no one knows, since it is a very new thing to use propranalol for this purpose.

For right now, the dosage question is answered by the fact that even on just 1 ml / kg Mercy's blood pressure is very low. Since we are seeing progress with this level, they are just going to leave her here. I will have to get her blood pressure taken on Friday, then again the end of next week. If it is lower we will have to do something else.

We are praying it stays the same or raises a bit, back to normal levels.

So that is all on our Mercy!!!

In other news on the farm, we are preparing our garden beds for planting the broccoli, cauliflower, cabbage, peas, lettuce, spinach, and strawberries. We also got 20 or so chicks today. I am sure photos will follow when I am not exhausted. Maybe in 20 years or so.

That was a joke. I think.

Mercy's Progress on Propranalol

Mercy continues to make incredible progress on the propranalol. Watching this happen is just amazing.

Here is March 3, before propranalol:



Here is March 24... just three weeks later:



Here is a front on version of how much the hemangioma is reduced. Those of you who don't know her personally will not appreciate how flat it is by comparison, but those who see her all the time... be ready to be amazed IRL.



Thank you for all your prayers. It seems that this drug is the miracle God is going to use to help heal Mercy. Isn't it amazing?!?!

And the Saga Continues...

The plague continues to go on, and now we have added a cold to the mix...

-Mercy is up and back to normal. We go back to Cincinnati tomorrow for appointments with the contact lense guy, the ophthalmologist, and with Dr. Adams. Hopefully she will be back to full health and able to re-start the propranalol.

- Bethany is on the way up after a very shaky weekend. Her diarrhea is less, and she is not throwing up as much. Hopefully she continues to improve.

- Matt has had a cold for the past couple days. Unfortunately he shared it with Nate, who woke up last night with a croup sort of cough. And for some reason there was no hot water to help with the steam... but this morning there was hot water. Weird. Don't know why.

But I had to give him Albuterol... which totally spins a child up. Between that and the fact that it has rained for a week straight, and I have gotten precious little sleep for the last couple weeks... I am ready to send him upriver. OK- not really. Maybe. ;)

Mercy's Progress on Propranalol

We have been seriously busy with the plague the past week or so, but yesterday we had a moment to breathe and noticed that MERCY'S HEMANGIOMA LOOKS GREAT! This is amazing since she only had 9 doses (3 days) then we needed to stop them due to her getting rotovirus at the hospital. BUT THE HEMANGIOMA CONTINUES TO CHANGE FOR THE BETTER!!! Here are photos from March 3 - the day before we started the propranalol.




And this was last night:





Can you just imagine how excited we are?!?! This morning it even looks flatter than these photos... wow. I'll keep everyone posted

Wahoo!

I am excited, but not nearly as happy as Eric will be in a few hours when he hears that we have really been discharged and are on our way home. Thanks for the prayers. Turns out Mercy has Rotovirus, so we will still be quarantined at home for a few days. But she has perked up some and is looking better.

On the propranalol side, we stopped it while she was sick. We got the full doses which they needed to monitor, so after she is fully better we will resume the propranalol. Amazingly, it did seem that in the short time she was on it that the hemangioma did look better. We'll see what happens when we get back on it!

I am ready to get home... hopefully she can continue to improve!

Mercy Update 3/ 7/ 09

Mercy continues to be a pretty sick little girl today. She has a low grade fever (100.5 or so), and is not eating or drinking much. Unfortunately her IV needed to be changed because it was getting red looking, so she had to have that too.

The doctors are pretty convinced we are dealing with a stomach virus. The bad side of this is that with propranalol, children tend to have their blood sugars drop when they are sick and throwing up. So it is good we are in here as they can have her hooked up to IV fluids and avoid dehydration. I thought she was maybe going to get to go home tomorrow, but then while I was writing this, she threw up again. I guess tomorrow may not happen. :(

They have stopped giving her the propranalol and lasix while she is sick. So currently she is only getting her prednisone, and zantac. At some time in the middle of the night I realized that soon we will just be down to three daily doses of propranalol... and then eventually we will have no medications at all to be giving her!!!

That will be a glorious day.

Mercy Update 3/ 6 / 09

The day started really, really well this morning. When Mercy got up I thought the hemangioma may have looked smaller and felt softer. Of course, this is what I was hoping for, so I thought maybe I was just imagining things. It also seemed her eye opened a little better. When Dr. Adams and all the residents / fellows who do the rounds came in, all of them agreed with this before I mentioned my thoughts.

This is a very subjective sort of thing, nothing objective about it at all. Mercy will have another MRI in a month, and that will be compared with the MRI from last week, and THAT will be the definitive measurements. But for today at least, it looks like the hemangioma may be responding to the propranalol. (Maybe?)

We had a good morning... went to the toddler room to play for a couple hours. Mercy acted great, no problems. We returned to the room at 12, and she immediately started going downhill. Her blood pressure was very low, but they finally got a reading that was OK. Then she started throwing up, and has been throwing up all afternoon. Since one of the propranalol issues is the need to keep her hydrated so that her blood sugar doesn't drop, this is a big deal. She is now on IV fluids for the night, and we are probably not going to be able to leave tomorrow morning.

They think that maybe she picked up something from the hospital... a stomach bug or something. But there is the chance that this is a reaction to the medicine. I could use prayers! I am thankful for the computer as a way to still connect with everyone, but I would rather be home with my husband and kids!!!

I'll keep you posted on what's happening through the weekend... Gotta go - Mercy's IV is beeping...

Mercy Update 3/ 5 / 09

We have completed three doses of proranalol, and all looks great so far. Mercy is doing well... didn't enjoy theI.V., but other than that has been a trooper. :) I'll update later.

Moving Mountains

Two weeks ago we were in the thick of things with fighting the insurance company to cover Mercy's treatments. Eric and I were pretty frustrated at the denials which just seemed to be unreasonable. I posted about it, and got many people praying. I also got some reminders that God is in control, and to be sure we continue to walk in the Spirit and remember we are examples of Him.

Thanks for those reminders! I needed them!

Last Wednesday we got the approval, and scheduled the time in the hospital to start tomorrow. I was relieved, and thankful, but still a little resentful at the difficulty we had getting this done. After all- if we didn't do the experimental propranalol we would have to do Chemotherapy!!!

Well, let me show you how great our God is. And the power of prayer. And the fact that mountains are still moved with the faith of a mustard seed.

Yesterday Eric got a phone call from the president of the insurance company. Anyone know we would never in a million years expect that? Anyway- she explained that the company never approves experimental procedures, but that she personally had decided to approve it. Why would she do that? She has a nephew who had a large facial hemangioma, with eye socket involvement, so she "understands" hemangiomas. She has taken such an interest in Mercy's case that she has already preapproved for us to go to New York to see Dr. Waner (the most famous hemangioma surgeon in the world). We don't feel a need to use this option, but it is so nice to know that if we want to, she would approve it.

It is also nice to know that we will no longer have to struggle for approval for anything Dr. Adams wants to do with Mercy's treatment. We have this woman's extension, and orders to call her if we ever need anything.

Can you tell me that isn't just an awesome move of God? I didn't understand why in the world there would be such a struggle to try one last thing before we need to do chemotherapy. Now I know... this one struggle has paved the way for us to not need to struggle again as long as Eric's company uses this insurance company for medical coverage.

Please continue to pray tomorrow as we head to Cincinnati to start the propranalol. If it is going to help, it will do so quickly. Pray for no side effects, pray for a reduction in the size of the hemangioma. I will have my new (to me) laptop, and camera, and hopefully will be able to keep everyone updated.

Mercy Update!

Wahoo! The Mountain has moved, and we are approved to start Propranalol for Mercy as soon as possible. It looks like we will do it starting next Tuesday, and be inpatient for three days. Thanks for all your prayers!

Monday Mercy Update

Well, insurance has struck again. By just doing nothing, we are unable to have the approval today, which makes us unable to go tomorrow. By them not making a decision, that pushes us back to Wednesday through Friday inpatient at the earliest, which cannot work because the doctor is out of the office on Friday and the weekend this week.

So we are now into next week at the earliest. With Eric's work schedule we are tentatively scheduling the start of the propranalol to be on Thursday, March 5.

I cannot express how frustrated we are with this whole thing. We have been fighting for almost 2 weeks to do this, and they are just stalling. Tomorrow we will call the state's insurance commissioner and see if they can advocate for Mercy.

Please continue to pray for us, that we can get them to agree to cover this, and that we can continue to be an example of Godliness on the way.

Prayers Please!

Hello all prayer warriors! We were supposed to take Mercy in to have her three day inpatient and start her propranalol on Monday. Unfortunately, the insurance is balking, and although the doctors on the insurance panel have approved it, the actual insurance people have denied it. Since it was late Friday afternoon, we cannot do anything until Monday at the earliest. Pray that God moves bureaucrat filled mountains on Monday, allowing her to start the treatment on Tuesday. Thanks!

Pray for Mercy

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The Great Cap'n Pirate has fixed the link now... Go ahead and copy it!
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Thanks, Maria, for letting us know the problem with the size. I have my people looking into it... (Thanks to The Cap'n )... I'll let you all know when it is better.

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If you will notice, I now have a wonderful button on my sidebar stating, "Pray for Mercy." If you have a blog, and pray for her, feel free to take the button over to your site and add it!

I have to explain why I am doing this. Just before Christmas we were at a church function, and a child who does not attend our church came up to Mercy . This child started taunting her with names such as, "Monster," and "Ugly Face." Obviously this was really hard for me, as her mother, to know hear about.

Shortly after this, we celebrated Mercy's second birthday, and the two year anniversary of dealing with her hemangioma. We have been thrust into the world of a medically needy child, and although I am eternally thankful that she has nothing worse than she does, it is difficult. We deal daily with medication, eye patching, contacts, four hour one way trips to doctors, and watching our daughter's face grow on an almost daily basis.

I know there are many, many of you who pray for her daily. I know many, many of you have been following her story and are storming the gates of heaven for her healing. I am so thankful for each and every prayer you have sent up for her!

I also know that although we have been dealing with this for two years, we are far from being done with this. I have been assured that someday we will go to the doctor only yearly instead of monthly (or more). But for now, it seems a very long time away.

So I decided to create a "Mercy Fan Club" if you will. A tangible way to remind myself when the going gets long that there are people out there loving her. Because each one of you are so very important to us! Leave a comment and let us know you're praying for her, and if you have a blog, take the button over there. Each one of you is a blessing to my family.

Finally... a Mercy Update

We finally got the results of the MRI, and a plan settled for this next stage of Mercy's treatments. First - the good news! The anomalies within her brain (some vascular issues, and the hemangioma) have not changed at all in the last six months. This is GOOD!

However, the outside hemangiomas have grown again. Dr. Adams has reconsidered the situation and decided that she wants to do the propanalol instead of chemotherapy. This is for several reasons... most to do with the risk of infection in a central line. Mercy has been on prednisone for two years now, and therefore has a suppressed immune system. With all the children in the family, Dr. Adams was concerned with the extra illnesses which might be brought into the family. She is also concerned with the amount of time it would take us to get to a larger hospital (2 hours or more) if she starts to run a fever.

So with looking at those things, she feels it is better to do the propanalol. She has developed a protocol to use in a study of this, and even though Mercy will be in before the study starts, she wants to use it with her. So we will be entering the hospital on Feb. 23 for three days. They will start with another echocardiogram to be sure that her heart is still fine for this. Then they will start her on the propanalol, increasing it 1 mg/ kg a day for three days... monitoring and watching her all the time. This will make sure that her heart continues to do well. There is also a risk of asymptomatic blood sugar problems, resulting in comas, so we are going to be tracking the blood sugar too as we are increasing the dosage. If all goes well we will be home on the 25th, and using the propanalol.

The photos I see of babies using propanalol for hemangiomas are incredible. The hemangioma reduces in size immediately! It is unknown if it will continue to stay small after we wean off the propanalol, or if it will grow back again, but it is worth a try.

So that is where we stand... sorry for making everyone wait to get the results. I wanted to make sure we knew what we were doing before posting it.

Have a happy day and a great weekend!

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!