Tuesday, January 26, 2010

Myra's 4 Month Update

Mr. Prince and Miracle Myra

We saw Myra's pediatrician this week for her 4 month check-up. I truly love our pediatrician, and with being so unhappy with our other doctors, I'm glad I have her to trust and support me. She agreed that the neurologist should have given us more information that we were given and is working on getting some additional answers for me this week. Specifically, if her suchers are fused and the difference in brain tissue from the CAT scan to the MRI. She said we will be likely looking at a referral to Indy, Cincinnati or Chicago at around 9 months old to a new neurologist and possibly other specialists.

Myra is now a whopping 9lbs 9oz and 21.5 inches long! I feel like she is in a forever newborn state! But, who doesn't want their baby to stay a baby forever, right? Well....not exactly, but having her small and cuddly for a little longer has made things a little easier. I think as she grows, the small size of her head will become much more prominent and I'll be getting a lot more stares and questions. I'm not quite ready for that. Anyway, her growth curve is starting to fall, which was already below the charts. So, she suggested we fortify any bottles we give her with formula (which is only about once a week right now) and said if she continues to not gain weight well, we may have to fortify once a day or more. They will recheck her weight in about a month. Grow baby, grow!!

And, just in case anyone was doubting parts of Myra's suchers being smoothed out at the healing service we went to....her head now measures 33.9 (up from 33.6)! Based on what the neurologist said about her brain not putting pressure on the skull because it has enough room to grow inside right now, it MUST have been God that moved those bones!

Also, the eczema we have been suspecting since Thanksgiving now has a staff infection apparently. I wouldn't have any clue it was infected, so I'm glad she said something. Myra is now on antibiotics, which I HATE, but it's best for her right now....so I'll deal.

Paul and I attended a Birth Trauma class this week and met someone who works at a place called Turnstone, a center for children and adults with disabilities. She was telling us about social worker options, therapy options and additional programs we might be interested in. Yet another God-ordained meeting. I have been floored by how very clear God has been speaking to me through sermons, books, devotionals, people and prayer the last few months. He has made it very clear that He is not done healing Myra. So, maybe we won't need those extra programs after-all. Until then, I'd like to research as many options as possible and maybe attend their support group. It feels a little isolating to be surrounded by all perfectly healthy children, including my own.

But, for now Myra is doing physical therapy once a week and I continue the therapy daily. I am pleased with her range of motion and tone right now, but they are telling me we will see what her true tone issues will be when she starts more voluntary movements. But, we are working on grasping objects, holding her head up, rolling and tummy time right now. I think she's doing well. I see improvements. =)

So, the waiting game still continues. The doctors say her brain has been severely damaged, but I know the God that created her brain to begin with!! HE will do what HE wishes with her brain, and her life. And I, but a breathe that has been given the unique opportunity to see His hand at work so intimately, will just wait in hope and belief.

As John spoke of a blind man from birth and his healing: "...but this happened so that the work of God might be displayed in his life." John 9:3b

May Myra's life show God's work to all who hear...

Friday, January 22, 2010

Another Inspiring Story....

This is taken from God's Little Devotion Book for Moms

Leslie was born mentally retarded, without eyes, and with cerebral palsy. Vegetable-like, he was totally unresponsive to sound or touch. At the age of six months, he was expected to die shortly . A nurse, May Lemke, was asked if she could care for him at home until that time. She did...for more than thirty years.

When May accepted baby Leslie, she accepted him as just that, a baby - no different from others - to be taught and loved. Year after year she cared for him, but there was no movement or response. Even so, she never stopped talking to him, singing to him, or praying for him. Music filled their home....still, no response. She and her husband bought an old used piano and put it in his bedroom. She pushed his fingers against the keys. With quiet faith, she knew God would someday help Leslie to break out of his prison. She rejoiced when he began to walk at at age 16.

Several years later, May and her husband were awakened one night by the sound of Tchaikovsky's Piano Concerto No. 1. Startled, they arose to find Leslie at the piano with a smiling glow on his face. Shortly thereafter he began to talk and to cry....and to sing. And at age 28, he began to talk in earnest. May's prayers were answered - in God's timing, God's way.

Thursday, January 21, 2010

Myra's MRI Results

Mr. Prince and I met with the pediatric neurologist this morning to go over her MRI results from last month. Unfortunately, I left with little answers to my questions and a little more anxiety about her condition. But, I'm trying hard to not be swayed by the medical side of it, knowing that God is truly in control and has the power to change anything we can see on a test. Yet, there is much pain knowing that something significant has happened to my little girl from just a few scary moments in the hospital. It's amazing that with today's technology that children can still be victims of birth trauma even while they are in the hospital under constant care. Life just gives us no guarantees, does it?

The neurologist started out by saying that there was severe brain damage done. She showed us the images of her MRI, which were very hard to understand at first. They splice the brain every few millimeters and take a photo. In the bottom left corner you can see what splice the photo is being taken of.

This is an image of Myra's brain. You can see the ventricle (area in the middle consisting of fluid) take up a significant amount of her brain matter. Also, all around the ventricles there are dark areas that indicate brain damage, and fluid has collected in those areas as well.

In this next photo from a different angle, you can see the enlarged ventricles and the dark areas of damage also.

Most of her damage is in the back part of her brain. They said the area that interprets vision is in this area, but PRAISE GOD, Myra CAN see! That is one thing they are still amazed about.

The neurologist basically said that she expects this damage to affect her speech, motor abilities and learning to some degree. She said she can't predict to what degree. She said Myra will continue to be at high risk for cerebal palsy, seizures, infantile spasms, and mental retardation.

We also talked about why her head was not growing. She said there is so much fluid and room for the healthy white matter to grow, that it's just not putting pressure on the skull. She said she doesn't know when it will, either. She also said in a previous appointment that if her head is small, it's just small. They don't do anything to make her head look normal. She said even if the skull fuses, that they wouldn't do anything because of the severe damage. Yet, my pediatrician said they can cosmetically make her head look normal even if the brain isn't growing, and that it would still be concerning if her skull fused at this point. I side with my pediatrician in that we would still like her to look normal and not add to the hardships she might have.

BUT, we are still expecting her brain to continue to grow and eventually put pressure on her skull. We know her brain/skull will always be smaller than average, but a 3-year-old with a head the size of a two-year-old isn't as concerning as a 3-year-old with a head the size of a newborn. So, we'll just have to see what comes. And keep praying about her brain growth.

I think I did well in taking in this information KNOWING this is not the full story or scenario, KNOWING that brains are very spectacular in how they heal and make new pathways after damage, and KNOWING that my God can do ANYTHING!

A week ago at a healing prayer service at church my head pastor prayed over Myra and he and Mr. Prince felt Myra's skull move. Later, after examining her head fully, I realized that a part of the overlapping suchers had smoothed out. I rub her head everyday, and that evening during service was trying to memorize the structures of her head so that I would KNOW that something had moved. It was VERY clear that a certain part has smoothed over. So, I believe that was God's reminder that He's not done dealing with this matter. And, that was not the first time my baby girl has been touched by God's very hands...

Like the Israelites in the desert, I need to remember all He has done for Myra so far. He made her heart beat after resuscitation. He didn't have to do that. He made each one of her organs begin to work perfectly after the doctors told us none of them were working properly. She is moving all of her limbs, she can see and she can hear. He made her suck/swallow/gag reflex come back after 3 weeks! He has healed her tremors and her seizures are controllable, if not healed. I've read about, and have met families with conditions much worse than hers. I even had a cousin who was completely immobile and died prematurely. We are blessed. We also have four perfectly healthy children. We are extremely blessed. And I give God all the Glory for that.

All that said, in my search to find a normal infant MRI scan tonight online, I came upon this story. I believe God orchestrated this search so that I would be encouraged.

This scan actually looks much worse than Myra's scan. The ventricles take up almost all the white matter. You would think this person was very disabled. Not so. Read his story here. This shows that no matter what this scan shows, we can still have hope, even from a medical standpoint!

But, I have put my hope in an Amazing God.

Will you hope and pray with me? I believe the prayers of many is what pulled Myra through her hardships in the hospital. And, I believe if we pull together and pray for Myra's brain like we did for her life, God will move greatly to show ALL those people what He is capable of. Please continue to pray for Myra. For her to stun all the doctors with her capabilities, for her brain to heal and create new pathways, for her head to grow. For Him to heal her completely.

Matthew 7:7-11 "Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened. "Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!

Matthew 18:19-20 "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them."
Matthew 21:22 "If you believe, you will receive whatever you ask for in prayer."
Mark 10:27 "Jesus looked at them and said, "With man this is impossible, but not with God; all things are possible with God."

Mark 11:24 "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours."

Monday, January 18, 2010

Sid the Science Kid Amazes Us Again

Zoobs are one of the neatest toys if you haven't ever heard of them. They are slightly difficult for a 3 year old to manipulate, but once they get the hang of it, there are no limits to the fun! They have a website where you can learn from kids around the world how to make creations they have created themselves, and you can upload your own images to share, too. Many of the creations come from Beijing, Canada, Guatemala, Philippines, Germany, Italy, and many other places. Sid enjoys finding these places on the map to figure out where these children live, find out what time it is where they are, and learn the bits and pieces Mommy can muster up to teach him in the moment about these areas. Here are the creations Sid has shared with the world of Zoobs:

Sid the Science Kid made a crown for the girls

Here Sid made a Computer, equip with the keyboard, mouse and even the antennae....LOL!

You are a smart, creative boy Sid and we are so proud of you!!

Winter Fun

Thanks to thrift stores and Grandma,
I had gear for everyone to play in the first snow fall!!

Boo Boo took a face dive early on, but still wanted to be outside!

Sid tried to climb the ladder to no avail....
Snow Angels!

Boo Boo had a GREAT time on the slide!