The Worship Song

So, any one that is friends with me on facebook probably saw my post about "The Worship Song". Let me elaborate.

The girls go to this little Baptist preschool that is about half a mile from our house. Every Wednesday they have music class that is called Sign and Sing. You can probably figure out what they do in there. So, they have come home with all sorts of songs. Some are funny kid songs and others are church songs. Now, when I send my kids to Bible class at church, or children's worship on Sunday, I can figure out every single one of the songs they have been singing. Baptists sing a bunch of different songs than us Church of Christer's, so I am usually at a complete loss for what the song is. So, I kind of have to take them at their word about how the song goes. I knew right away there was a flaw in the "Worship Song". Below is the video of the girls singing the worship song to me. Notice the cult-like-determination in their eyes and hand motions. Following that is a video clip from their spring concert where they actually performed the real song.

*NOTICE* You will see that only Ruthie is in the worship song video. Maddie had some stomach problems that night and excused herself to the potty for the last song. Ruthie was completely lost the whole time before the song started asking where Maddie was and looking around. You will notice the preschool director standing behind her keeping her on the riser since she kept turning and calling for Maddie. But,you will get the gist of the song. Ruthie still shows the cult-like-determination in her hand motions though.

Because what is cuter than Pre-Schoolers singing?

Yes, Yes, I know. It has been since Halloween. I will not make excuses, except to say, if you havent checked out Well Versed Gift products in your local Lifeway, please do!

So, life with three year old twins is anything but boring. The personalities and imaginations are in full swing. What could be more adorable then watching them in their spring pre-school concert? I have made a short video of them when they were actually doing what they were supposed to do and then a clip of them doing the complete opposite of what they are supposed to do. I posted part of this video on facebook, so you may have already seen some of it.

My next post, which will be coming shortly, not in like months but much sooner, will address the ever popular "Worship Song" video from a few months ago. It will also have the grand reveal of what the ACTUAL song sounds like. I know, the anticipation is killing you all.

Halloween!

One of the good things about Halloween being on a Sunday is that you get to make the whole weekend about Halloween. So, you at least get a little bit of use out of those costumes. And boy did we get use out of out costumes!

In years past, Mark and I have been all kinds of creative with the girls costumes. They were Thing 1 and Thing 2 when they were 1 year old and they were sticks of Doublemint Gum last year. So, this year we had big plans again. That was until our 3 year olds formed opinions. I dont know where these things came from. So, I decided to just take them to the costume store and let them pick out their own costume. I was a little nervous since, when asked, they wanted to be everything from a pumpkin to Minnie Mouse to Elmo, never agreeing on any of them. I was expecting a pumpkin and a Minnie Mouse. So, imagine my surprise when we ended up with these.


That's right! Two Dora the Explorers! When given the choice of whatever they wanted to be, they wanted to BOTH be Dora. From that point on, whenever they were dressed in costume, you had to refer to them as "Dora Maddie" and "Dora Ruthie". And no matter how messed up the wigs got, they refused to let me take off their "Dora Hair".


Friday started out the festivities with their Halloween party and parade at school.

A Halloween parade at preschool is mass chaos. Probably caused more by the parents trying to get pictures than of the hoards of children marching around in costume. It was virtually impossible to get any good pictures at the "parade". To make it even worse, Ruthie kept messing with the dragon in front of her. She was fascinated with his spiky back and tail.

On Saturday Mark took the girls trick or treating in Fairview and then on Sunday we had a full day again. We let the girls knock on the doors around our cul-de-sac, then we headed to Trunk or Treat at church.

After Trunk or Treat, the girls were able to participate in a neighborhood tradition on Halloween. One of our neighbors, Frank, hooks up a trailer to a 4-wheeler and pulls kids around the neighborhood. If you saw the mountain of a hill we live on, you would easily understand how this tradition began and why it has continued. This is what it looks like from a distance.

This is what it actually looks like with a flash!

The girls LOVED the "Halloween Ride" and went on it two times around the neighborhood before we had to make them go back into the house.

The girls had a great weekend, and Mommy has been able to eat lots of their candy, so everyone is happy!

Pumpkins!

The girls were so excited about their pumpkins this year. Mark was in charge of the whole pumpkin thing, as he is every year. I have no creative bone in my body. Not to mention I am not so good with a knife. Although the girls were super excited about the pumpkins, they were less excited about helping once they saw how messy the whole process was. Mark was looking forward to them getting all ooey and gooey. Apparently he has never met our children. If so much as a spec of dirt gets on my kids there is instant crying followed by screaming of "Messy! Messy!", which can only be resolved by me scrubbing them down with soap and water. Once I gave them a spoon, then they were a little more into the process.

Unfortunately, they pull out the seeds one at a time with the spoon, and Mark's patience cant handle that.

So, needless to say, Mark cleaned the pumpkins also.

Maddie was very specific that she wanted circle eyes, triangle nose and a happy face. This is what she got.

Ruthie decided she wanted triangle eyes, triangle nose and a sad face, for some reason. I am sure there are years of therapy in the future as to why she wants her pumpkin to be sad.

Getting them to both look at me and smile still proves to be impossible.

Presents

What does this look like to you?

Any normal person would say wadded up paper. I here to enlighten you. These are actually "presents" made by my children. Apparently wadding up paper into a ball makes it a present because you can open it. I will admit, most of the time there is something encased in the wadded paper; crayons, figurines, plastic food, etc. So, I have had to stop and look twice before just chucking wadded up paper into the trash can since there is usually something in there.

I am not exaggerating when I say that I received approximately 20 "presents" a day. I have come to the point that when they are not looking I just unwad the paper and give it to them to start over with. I own a stationery company for cryin' out loud. I am already personally responsible for an entire forest being killed and stored in my basement for re-sale. I can not handle the additional guilt of letting my children crumple up paper for pure entertainment with no ability to at least re-sell it!

3 Years Ago....Our Miracle Babies

The doctors informed us that the girls tested negative for all 12 metabolic disorders. Never have I been so disappointed in my children not having a disease. We still had no answers, and the fact that probably whatever they had would be rare and untreatable was not a comforting thought. All of that testing would take place in outpatient office visits since we were just basically sitting around Vanderbilt taking up two rooms.

On Sunday morning, it wasnt even a question, we were going to church. Not that God and I hadnt been talking quite a bit this week, but I just needed some time out of the hospital with Him. On Wednesday, after we received the diagnosis, I snuck into the college praise and worship that night and then went back to the hospital. I didnt want to see any one, I just needed some time to sing and pray. Sunday morning we skipped Bible class and purposely came in about 5 minutes into worship in order to just sit in the back and avoid all the questions. Not that we didnt appreciate every one checking in on us and all of the help, but we just wanted a couple minutes of not having to think about the girls. Not to mention this was my first time back to church since having the babies. I thought my first time back I would be carrying two carriers, stopping in the nursery, showing the girls to everyone etc. Instead, I was sneaking in the back with Mark and my sister.

Of course people noticed us as soon as we walked in. We sat in the last row, pretty much in a daze. Then the song leader led a song that to this day I still can not sing without crying. Talk about God speaking to you. "O For A Faith That Will Not Shrink". I sang these verses through tears streaming down my face.

O for a faith that will not shrink,
Though pressed by ev'ry foe,
That will not tremble on the brink
Of any earthly woe.

That will not murmur or complain
Beneath the chast'ning rod,
But in the hour of grief or pain,
Will lean upon its God.

A faith that shines more bright and clear
When tempests rage without;
That when in danger knows no fear,
In darkness feels no doubt!

Lord, give us such a faith as this;
And then, whate'er may come,
We'll taste e'en here the hallowed bliss
Of an eternal home.

Never had a song had such an emotional impact on me as that did then and does now. I have forbid Mark from leading it at church since I turn into a blubbering mess and people give me funny looks.

On Sunday after church we were blessed to have 9 of our 10 elders come to visit us in the hospital. One was in Africa, so he was excused! :) All 9 of them came in to pray with us. They asked us what we needed to pray for and Mark said, "That they will just be healed. That all of this will just be taken away." I was completely taken off guard. Of all the things that I had been praying for, I had not once prayed that God take it away and heal them. I had prayed for help, for strength, for patience, for understanding, for everything else but to actually heal them. I thought I was doing so well depending on God through this whole ordeal. I truly had turned EVERYTHING over to him because I knew I couldnt handle it on my own. But, I just took what the doctors told me and accepted that it was the way things were going to be and prayed that God would help me through it. I had put God in a box of limitations. Limitations that I had placed on him, not that he actually had. He is the "Great Physician" and I had not even asked him to heal my children. Talk about an eye opening moment.

I truly believe what James 5:16 says that "The prayer of a righteous man is powerful and effective." We had 9 wonderful, righteous, God-fearing men praying for our girls. So, we brought Ruthie and Maddie into the same room and me, Mark, my sister and our elders stood around and we all placed our hands on the girls. As each one prayed, one by one, I can honestly say that I could feel the presence of God in that room. I can not explain it, all I can say is that I could feel the power and comfort of God in that room with us. If nothing else, I left there feeling uplifted by that brief moment in prayer to God and the eye opening experience of not limiting what I ask God for.

Katie was wanting to stay around to talk to the doctors one more time, but they didnt make their rounds before her flight. So, I headed to the hospital to send her back home. My mom was coming back down since the girls were getting discharged and I would need help again at home. I dropped off Katie and was driving back to the hospital when Mark called me. Ruthie's follow-up MRI came back. All of the irreversible brain damage shown on the previous MRI was completely gone. The words made no sense to me. I was minutes away from the hospital so I just told Mark to hold the doctor there and I would be there as soon as possible. I sprinted from the parking lot up to Ruthie's room where her doctor showed us these new MRI images.


There were no more white spots. It looked like a completely normal 2 week old baby's brain. The radiologist said he had never seen anything like it in his entire career of radiology. He said that he had sometimes seen these results over a period of years, but not a couple of days. The neurologists could not explain it. We didnt need any explanation, we knew. God had answered our prayers. Here are the medical notes from Ruthie's second MRI.

Technique: Multi-planar multi-sequence MR imaging of the brain was
performed both prior to and following 1 cc of Magnevist.

Comparison: 10/9/07

Findings:
There is no abnormal intracranial enhancement. There has been
interval improvement restricted diffusion which involved the
subcortical white matter on the prior study. Minimal residual
restricted diffusion is still identified in the subcortical white
matter of the posterior parietal lobes. There is no mass effect or
midline shift. The ventricles are normal in size and configuration.
There is no intracranial hemorrhage. Sagittal midline structures are
unremarkable.

The paranasal sinuses and mastoid air cells are clear. The orbits
are grossly normal.

Impression:
1. No abnormal intracranial enhancement. Minimal residual
restricted effusion remaining in the subcortical white matter of the
posterior parietal lobes.



Of course they immediately wanted to do a follow up on Maddie's MRI also, and below were the results.


White spots cleared up also. We were given the CD before they were able to record the medical notes on the Maddie's last MRI, so I dont have access to them from home on her last MRI.

I truly believe that God gave us a miracle. There is no medical explanation for what happened to our girls. We never received a diagnosis except for them concluding it must have been something viral . Our girls had gone from a diagnosis of being severely delayed to having MRI's that were completely normal. We were lined up with SEVERAL medical appointments every month for follow up that we went to. The most interesting were the neurology appointments. Of course before they came in the room they would review the MRI's. After their exam they would always have this confused look on their faces as to how children that presented with the original MRI were holding their heads up, rolling over, babbling, etc. They would always comment that these were not the children they expected to see while viewing the original MRI. I would just smile and tell them that God answered alot of prayers. We were eventually discharged from neurology and taken off anti-seizure meds at 6 months. They told us if the girls presented with any abnormal symptoms again to bring them back in, but at this point they didnt see a reason to keep treating normally developing children. We had the girls in weekly physical and occupational therapy for the first year. They tested out after their first birthday since they showed no signs of delay. By one year we had been discharged from all of their specialists except for heart and eyes.

If you have ever read my blog before, of course you know that we have had a happy ending. The girls have continued to develop on target, and maybe even a little ahead on some things. No one would even know anything about their medical history by looking at them. Ruthie's opthamologist said that her seizure activity is a possible reason for her eye muscle issues, but that is currently the only lingering side effect of our entire 10 day stay at Vanderbilt. When the girls start school we may run into some other delays with education. I will take an educational delay any day over the expectations the doctors told us to originally have.

Of course we have skeptics that dont believe that God healed our children after they hear our story. The number one objection is that the MRI machines must have been broken. Maybe. But, if you look at the dates on all 4 MRI images, they are on 4 different days at 4 different times over the course of a week. That means that Vanderbilt Children's hospital was performing MRI's for almost a week on broken machines, which wasnt the reality of it. Other people think that there must not have really been anything wrong with them and they just got better. To my knowledge, they do not keep a child on a respirator for 3 days with nothing wrong with her. And, maybe they just did get better. But there wasnt a single doctor on any of their teams that had seen a brain injury like theirs disappear the way it did. To me it is so obvious that God healed my children. He answered our prayers, the prayers of our family and friends. There is no other way for me to thank him for that expect to give him all the glory and to tell any one that wants to listen of the great things he has done in our lives.

Our girls are obviously too young to understand the whole situation, but as they get older Mark and I plan to have this story drilled into their heads. They are going to know that God took care of them in a time that even Mommy and Daddy couldnt, and that they better live their lives giving glory to one that gave them the healthy life they are living.

This whole story turned into a lot longer of a blog post then I thought, but as I kept going back through emails and medical records, more and more kept coming back to me. I hope that for those that didnt know their story are maybe a little more enlightened as to where we are coming from. I hope it is a little bit of encouragement about God's amazing power and the power of prayer. It is a good reminder for me that God is active in our lives, even when bad things are happening and nothing makes sense. He will make sense of it, in his time.

3 years ago...Waiting

I didnt take any pictures when the girls were in the hospital. I remember thinking, "Who in the world would want to remember this?" I wish that I had now. Luckily, a much wiser woman, knew I would want pictures later and took a couple and saved them for me. Thank you, Barbara Fox! So we only have a couple, but I look exhausted in them!

Things actually slowed down quite a bit after we received the girls MRI results. It was a lot of waiting while they were running tests. We also had to do a personnel swap in my family. I love my mother. She is probably my best friend. She was a HUGE help with the girls after they were born, taking the night shifts with me. But, my mother does not do well with hospital situations. I called my sister and informed her that she had to come and get mom because she had boarded the "crazy train" and wasnt coming back any time soon. She had stopped eating and was freaking me out more than she was helping me. I thought that a couple days at home in Albany with my niece, Lily, who is her favorite grandchild anyways, would do her some good. Not to mention getting some sleep in her own bed, all night. So, my dad came and picked up my mother and my sister took her place.

Looking back now, I have a different appreciation for Katie coming down. At the time I just thought, "well of course she will come down". Thinking back on it now she left a 3 month old, breast feeding child at home to be down here. She left a VERY attached almost 3 year old at home. And, my wonderful brother-in-law (this is one of the few times you will see me refer to Brian in these terms, so take it all in Brian!) who allowed her to leave her two children with him. Now that some time has passed she does blame the trip for Jamison stopping breast feeding so early, but whatever. Katie and I were basically our own PICU dairy with both of us pumping at least every 3 hours. They actually gave us our own little fridge to store the milk in. Katie flew back home to Albany the following week with a cooler of breast milk. I took home 90 ozs from our entire stay at Vanderbilt. When Katie got home she realized that she had accidentally taken a bag of my frozen milk. She was still slightly convinced/paranoid my milk was poisonous (see next paragraph) so she threw it out. (A gasp is heard around the world from any mom that has pumped at the fact someone threw out 6 ozs of liquid gold!)

Soon after the MRI results we met with a genetics team (another team added). They informed us that they thought it was a genetic disorder that the girls had. There was something that their body was not able to metabolize and as a result there were these "infarctions" in their brain. Well, the only thing the girls had coming into their bodies was breastmilk, so I went through a brief freak out moment were I was convinced my breast milk was poisonous. They assured me it wasnt. Then the reality of what they said kind of sunk in. A genetic disorder. They said it was probably recessive traits that we both just happened to carry. That meant this was something that Mark and I had given to them. That was a hard pill to swallow. Then the completely selfish side of me came out. If this is something that Mark and I passed on to our children, there is no way that we are having more children because I am not going through this again. By a doctor telling us that, they had basically made the decision for us about having more kids. I was so upset about the "decision" being taken away from me. It is one thing when you decide to not have any more kids, it is another when an impossible situation is presented to you, taking that decision away.

So the testing began. Everything they tried came back negative. Finally they came to us with the fact that here were 12 metabolic disorders that were possibilities of diagnosis's for the girls. All 12 were treatable, which was great news. Unfortunately, if they did not have one of those 12 metabolic disorders, they told us that whatever it is would be rare, and probably untreatable. So, I actually began to pray, and ask others to pray, that my children have a metabolic disorder. Now there is a prayer that I never thought I would be praying. But, that was my prayer.

By this time, news had spread throughout several avenues, about the girls. We received emails, cards, facebooks posts from people from all over the country that were praying for our children. One night, one of the night nurses came into my room and asked us if Ruthie and Maddie were the kids that the facebook group "pray for ruthie and maddie" was about. It turned out that it was the number one facebook group in Nashville that day, and it popped up on her screen. When Ruthie was moved up to the regular floor on Thursday, across the hall from her sister, there were no visitor limits like in PICU. I am pretty sure that Vanderbilt wished there was by the time we left. Both the reception area in the main lobby and on our floor had pre-made "Sullivan" visitation passes since every one that came by requested one. We were flooded with visitors from church and our families. We were never without help or company. Every night people brought us meals, or came and sat with the girls so we could go out. One of the Bible classes from church collected money for us to help pay for medical bills. Every shift the nurses would comment on all of our visitors and how much support we had. All of of our visitors were such a great testimony to the support and genuine care that Christians have for one another.

On Friday the girls were doing great. If you had not just told me that there was a pretty significant chance that they could be vegetables for the rest of their lives, you would never know there was anything wrong with them. They seemed like perfectly normal babies, but we knew different. All of the teams had basically decided there was nothing else that they could do for the girls in the hospital, no matter what the results were from the metabolic disorders test. They said we would just have to follow up with several appointments, so they prepared to discharge us. Neurology requested a follow up MRI to be done on Ruthie before discharge. For some reason, unknown to me and my sister, it is IMPOSSIBLE to get an MRI and reading over the weekend at Vanderbilt. Trust me, we nagged every on. My sister actually went down to radiology to see if she could grab some on. So, we were stuck at the hospital all weekend, basically just hanging out and waiting.

A speech therapist (another team) was called into help also. When they removed the feeding tubes from the girls, they had both lost their suck reflex. So we started working with them to try to re-teach them their suck reflex and work on latching again. This eventually was the reason that I had to stop breast feeding the girls and went to bottles. Even though they re-learned how to suck, they could not get back to breast feeding the way they were before. It was taking over an hour for each baby to feed, which doesnt work well when there are two babies and only 3 hours inbetween feeds. So, I pumped for 6 months and gave the girls bottled breast milk. The 90 ozs that I had stored up from the hospital stay was a great help!

The girls were officially discharged from their infectious disease team, so they were allowed to be taken out of their room. The girls were doing so well that the nurses told us that they could stay in each others rooms, without machines during the day, but at night they had to be in their own rooms with monitors, just to make getting vital signs easier on the night staff.

So we waited until Monday to get MRI results and be discharged.