More Snow!

Remember that you need to pause my blog music before you watch the video! The music is in a box on the left.....

Sweet, huh?

Wish they could be this way with each other all the time....

I blame Daddy for the sweet tooth.

Can I freeze her so she can be this age forever???

Sophie loves her Aunt Erin

A picture that Sophie drew a few months back. It is a picture of Aunt Erin in heaven with Jesus and her angel, Daisy. That little one has a sweet heart, I tell you.

OHS Picture

First of all, so PROUD of myself for figuring out how to e-mail pics from my phone! YEA for me. :-)

Okay, so here is what you are looking at:

The large grey spot on the left is the lesion that they are treating right now. That started out as a small spot. It is on top of the center of my retina, which is why they cannot operate on it. It would either cause me to lose my central vision or could cause the histo spot to reactivate and grow even more.

The area on the right that looks like it has a light in it and then there are vessels coming out is the optic nerve area. The optic nerve itself is there where all of the blood vessels meet . The black lines that surround the optic nerve are scars. It is one big circle of histoplasmosis. This is what may have caused the damage to the optic nerve. 

I know this may be gross to some of you, but I know it helped me to look at it with the doctor yesterday and really understand what we were looking at. 

Permanence

Yesterday's appointment with the retinal specialist left me with such mixed emotions. I was just a numb shell last night when I got home. John was so sweet to let me just be by myself for a while. 

Here is what we do know for sure:

- My vision has once again gotten worse (went from 20/120 last month to 20/150 this month).

- The lesion in my eye is quite large.

- Surgery is NOT an option for me. 

- God is in control and He is bigger than all of this. His hands are all over this. He has a plan.

- This is NOT the end of the world, in the grand scheme of things.

Even still, I am scared. I feel very much alone and helpless. At the same time, though, I know there are so many people who love me and are praying for me. The specialist was fairly certain that the hemorrhage is under control. He did have me get one more injection (just to make sure it stays that way). There is a lot that is still unknown about OHS [Ocular Histoplasmosis Syndrome]. He told us last night that before they realized that the Avastin injections were useful in stopping the bleeding, they would just have to let the lesions grow until they went dormant again and then go in to surgically remove all that they could get. It was not a very useful procedure and the results were not often very favorable. So, we are thankful for the advances that led to the Avastin injections. At least, they can try to stop this thing from growing any bigger. My God is bigger than OHS.

Even with my lesion being as big as it is, the specialist cannot understand the vision loss. I should have some vision loss with the lesion, but not as much as I am having. There are two options for why this is happening. So, next month, they will do a dye test where they inject some dye into the blood vessels of my eye to see if there is leakage anywhere else that they cannot see from the tests they have done so far. It is possible that this is the case. If so, we will continue the Avastin injections to see if they will help. If that is the case, Dr. Rafieertary is hopeful that we can get some vision back. That being said, he did tell me yesterday that my vision will never be "what I want it to be" again.

However, the other possibility is that the histoplasmosis has damaged my optic nerve. If this is the case, there is nothing that they can do to make it better. The size and placement of the lesion makes a laser procedure impossible. Trying to repair anything on the optic nerve could lead to total blindness. The dye test next month will get us closer to knowing which of the two scenarios is happening in my eye. Because I am nearsighted, my optic nerve is tilted back. There is no test right now that can tell them for sure if the nerve has been damaged. 

I was able to get a picture of the lesion last night, as well as my optic nerve. I will post it later and try to talk you through what you are seeing. For right now, just know that I am okay. I have cried. I have cried a lot. It is scary to think that I might slowly be losing my sight and that it will not come back. It is scary to know that I have the same spots in my left eye that could reactivate at any time. However, there is a peace that comes in knowing that God is in control. I have seen what the power of prayer can do in my own life time and time again. I am not giving up on this. We will continue to do research on our own to see if there are other options for me. 

Thank you for your prayers, calls, and text messages. I cannot tell you how it helped me yesterday to know that so many people were praying for me. Thank you for loving me and my family. We are so blessed and this is so little in comparison to what could be happening to us. 

Heavenly Father, please reveal Yourself to us in this situation. Show us what You would have us do. Be with Dr. Raff as he determines what to do next. Open doors for us that You would have us go through in this process. Close doors that You want to close. Remind us - remind ME - that You are so much bigger than this. Use this situation for Your glory. Here I am, Father. I am Yours. Help me to remember that You will not leave me nor forsake me. Help me to always be willing to praise You - even right now. Thank you, LORD. Thank you.

Teeth

Lunch conversation of the day:

S: "Mommy, these carrots and apples that I am eating are helping my loose teeth wiggle." [Her bottom two teeth are slowly, slowly, SLOWLY starting to loosen up. She and I, of course, talk about them like they are hanging on by a thread. Excitement on both of our parts. :-)]

Me: "They sure are. Mommy lost a tooth taking a bite of an apple one time."

S: (eyes really wide) You did???

Me: "Yep. And then there was another time when I was eating a peanut butter sandwich - the kind with the peanuts that you do not like, S, when another tooth came out." [at which point, I point at the back of my jaw to show her where I had lost the molar)

S: (eyes even wider than the last time) "Your tooth came out of your ear?!?!?!"

Father-Daughter Dance

The little girls went with their daddy to the Father-Daughter Dance at church last weekend. They had such a fun time. They got all dressed up in their "fancy" dresses and got to dance the night away with Daddy. Sophie is an old pro at it by now. Since this would be Ella's first time to go, Sophie was excited to tell her all about it. John was fighting a sinus infection, but he was such a trooper of a Daddy - fighting off that yucky sick feeling long enough to take the girls out on the dance floor for a couple of HOURS. Made my heart happy that he did that. It is such a sweet memory for the girls, and I was so happy to see Soph get so excited about going. 

Her excitement rubbed off on Ella, and they were just so precious getting ready - they both decided that they needed to work together to pick out the perfect dress. It was just precious. 

By the end of the night, they were both so tired but they are still talking about the dance with Daddy.

To my precious husband: God has just blessed us abundantly. Every day is an adventure. Some days are scary and stressful and long and hard. But, for the most part, our life could not be any better. Most days are funny, sweet, exciting, and wonderful. Thank you for taking the time to show our daughters how the men in their lives should treat them. You are teaching them how they should be loved, respected, and treasured. In the process, they are soaking up every minute of that precious time with you. It is something that I love watching. It is a special honor for me. You are precious, sweet baby. Just precious. I love the daddy that you are to these girls. Watching you with them makes me fall in love with you all over again. My love you. Very much.

Sophie Love - Update

The procedure this afternoon went much better than we had anticipated. Sophie was such a big girl. She never even looked back when they took her through those double doors to the operating room. A friend of ours from church is a Child Life Specialist at LeBonheur, so she came and went over everything with Sophie. Then, she got to dress out in scrubs and walk with Sophie back to the OR. It was such a sweet gift from God to have Molly there today. I was nervous about Sophie being scared. Molly was able to carry her into the operating room and stay with her until she was asleep. She then came in and let me know that Sophie was fine, asleep, and that they had started. So, I had to hand my precious girl over to these doctors, but a sweet friend was right there with her when I could not be. God is so good to us.

Sophie did great throughout the procedure. The doctor said that her lung structure is fine. There was no evidence of an underlying infection in there. He took lots of samples from her lungs and her nose. They are testing the lung samples for all kinds of germs, fungi, etc. The samples from the nasal biopsy are being sent to Mayo Clinic for analysis. They are trying to rule out something called Primary Ciliary Dyskenesia. It would be a surprise if Sophie had it, but we will be happy to know once and for all whether or not we can rule it out.  Sophie and I will head back to the pulmonologist in eight weeks for a follow-up visit. We will get all of the results at that time. 

Thank you for your prayers, calls, text messages, and e-mails throughout the day today. It meant a lot to me to have so many of you praying for us and our Sophie. 

Sweet Sophie Love

We are taking Sophie to LeBonheur for some testing this afternoon. The lung specialists have ordered a bronchoscopy and a nasal ciliary biopsy in hopes that they might shed some light on our sweet girl's "atypical asthma". She is doing very well this morning. She did tell me one time that she was worried about the hospital, so we talked about it. I think the IV scares her more than anything else. They will be putting it in while she is still awake (vs. putting it in after the gas knocks her out as they have done with each set of tubes). 

Please pray specifically for the following:

1. peace in her heart, as well as in ours

2. that the IV placement will be as stress free as possible for a 5-year-old

3. that the testing would begin on time (She could not eat after midnight and testing is scheduled for 2 pm. She will be hungry. Hungry Sophie = Sometimes grumpy and unreasonable Sophie! See #2 above.)

4. that this testing would reveal something useful to the pulmonologists

5. no complications from the bronchoscopy.

6. that we would trust that the Lord's hands are all over this situation

Love you guys! We will keep you posted via Twitter while we are down there.

"In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation." Psalm 5:3

The Storm

There has not been an easy start to 2009 for me. I am struggling in so many ways, and there are days where I feel like I am letting the fear consume me. Fear of the unknown. Fear of what life might be like should my other eye hemorrhage. Just a sometimes all-consuming fear that I cannot explain. My eye continues to remain the same, so I just wait and wonder. And I pray. I pray a lot. I pray for the Lord's will - whatever that might be. It is so hard. 

What I want to pray for is a restoration of sight. A FAST restoration of sight. An end to all of this - the injections, the appointments, the patching, the double vision, all of it. But, then I have to call for an end to the pity party. Then I remind myself that my God IS bigger than this. He CAN heal my sight. He CAN put an end to it. Right this second if He wanted to. But He has not done that. He is using this situation. Using it to teach me something. Or to teach someone else something. Or using it to bring someone closer to Him. Perhaps that someone is me. Perhaps it is someone else. I cannot call the shots.  I have no control here. And, unfortunately, that is where I seem to be letting my fear get in the way of my faith. I let my fear try to nudge its way in between myself and my Healer. My Redeemer. My Savior. THE Great Physician. 

Casting Crowns sings a song called "Praise You in This Storm". It is #4 on the playlist on the right side of this page. I have had so many times recently where I find myself humming or singing this song to myself. It hit me like a ton of bricks this morning as I listened to it and really paid attention to it. He has been trying to make me understand and I was just so stubborn. This is what I am not doing. I am not praising Him. I am questioning Him. I am asking why. Why me? Why now? Why my vision? Why? Why? Why? I am ashamed to even write it out. I realize that it is a human reaction, but it saddens me to look back on these past few weeks. I did NOT keep the idea of my God being BIGGER than anything in the front of my mind.

I let my worldly view creep in and take over. My vanity - how many people will laugh at the patch or crack a joke about it? My past - how many times are these things going to happen to ME? Doesn't God realize I have had my fill already? My insecurity - why shouldn't this happen to me? Don't I deserve it in some way? My selfishness - this is NOT THAT BAD in the big scheme of things - it is not cancer, not a death sentence, not the loss of something so dear to me that I think I will never be the same again. 

It is nothing more than a storm. A storm that I will get through. A storm that will eventually subside. A storm that HE will carry me through. I am not alone. And I am going to let the praises flow from my mouth at every turn. That may be what He was trying to teach me all along. 

"Praise You in This Storm" - Casting Crowns

I was sure by now

God You would have reached down

And wiped our tears away

Stepped in and saved the day

But once again, I say "Amen", and it's still raining

As the thunder rolls

I barely hear You whisper through the rain

"I'm with you"

And as your mercy falls

I raise my hands and praise the God who gives

And takes away

And I'll praise you in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I've cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

I remember when

I stumbled in the wind

You heard my cry to You

And You raised me up again

My strength is almost gone

How can I carry on

If I can't find You

But as the thunder rolls

I barely hear You whisper through the rain

"I'm with you"

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away

I lift my eyes unto the hills

Where does my help come from?

My help comes from the Lord

The Maker of Heaven and Earth