Big Brother Love

Scottie loves Shaun. Shaun loves Scottie. Its a beautiful thing!

From the moment Scottie understood he would be a big brother, he was in love with "his" baby. He would kiss my tummy, rub it and say "big brother loves you." He loves him even more now that he can hold him, help him, teach him, kiss him. 

No worries, Shaun will always have his big brother to look out for him.

Nothing does this momma's heart better. 

I was blind but now I see.... sorta.

On September 14, Shaun had bilateral cataract surgery to rid him of the "scales" from his eyes. His vision was impared for at least 8 months, when he was diagnosed with lemellar cataracts. These are cataracts that are developed after birth, for some reason unknown. The surgery was successful, removing these blinders from his eyes.

Theropy post op included sleeping with these taped over his eyes for 3 nights.

Today we traveled back down to UVA to see how Shaun's eyes are healing. We were given the option to get him glasses or learn to put contacts into his eyes. We decided on the glasses as Shaun wouldn't be able to tell us if his eyes hurt or there was something wrong with the lens. His glasses will be ordered tomorrow and we should get some sight soon. I asked Dr. Carter what things would be like. Would Shaun put the glasses on and immediately see? What can he see now? How long will he need these? 

The answers are few and the road long. This will be a marathon, not sprint. He will gain sight back slowly, change glasses prescriptions regularly, undergo eye therapy, but with any luck he will gain good sight.

Bronchitis...

Today I took Shaun to the doctor because my mommy sense was going off.  He was not in respiratory distress, have a fever, or breathing too fast but I new he was having a hard time and sounded terrible. I tried to get into our normal pediatrician but they were booked up (tons of sick kids since the start of school and cold/flu season), but was able to get in at the care clinic here in town. The PA who saw him told me that his cold has turned into asthmatic bronchitis and has the potential to develop into pneumonia. I need to watch him for a rise in temperature, continued trouble breathing, green mucus, wheezing and respiratory distress. They started him on Omnicef, a powerful antibiotic and prednisolone, a steroid.

Please pray for Shaun today, that it doesn't get worse, he is strengthened by the Ultimate Physician and touched in a way that everyone can see it is God. Pray he is able to sleep well and that the mucus will dislodge from his lungs. That this will pass quickly and not have negative repercussions on his spirit, abilities, or healing from surgery. In Jesus' name.

Phil 4:6
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Psalm 41:3
The LORD will sustain him on his sickbed, and restore him from his bed of illness.

Shaun's background

On June 10th, our 4th child, 3rd boy, was born at Winchester Medical Center in Winchester, VA. He was 8 lbs 3 oz, just like his big brother Scottie, 20 3/4 inches long and wonderful. He had trouble with temperature regulation but that soon went away and we were happy mommy and baby. Peter and I took him home in a regular time frame, at 4 days old. The first couple months went normally until around 4 1/2 months he got sick with a bad cold. It took him a long time to get over it, but finally did and we didn't think much of it until later. He was progressing typically until this point.

At Christmas, Peter and I got together with my sister and I noticed Shaun was not progressing as fast as her daughter (who was born just a few weeks before Shaun) was. We then went to his well baby check up in January, voiced our concerns, and it was confirmed that his weight had dropped off too. Shaun also was riddled with infections and colds landing him with ear infections around once or twice a month. We got tubes in his ears which kept us from having to go in for ear infections in February. In March, our trips to UVA started. We saw a developmentalist who confirmed our suspicions that he was behind- at 9 months he had only progressed to a 3-5 month developmental level.  Given our family history, the doctor set us up with genetics and sent us to get an MRI. The MRI showed that he had legions in his basil ganglia and cerebellum. They were not sure what this meant.  Hoping for more clarity, he was set up to see ophthalmology, which didn't provide any diagnosis, but determined that Shaun also had bilateral lemellar cataracts which would require surgery.

Since then we have gone and seen multiple specialists, GI, neurology, genetics, feeding clinics, started occupational therapy and physical therapy in our home, and this is what they came up with:

Shaun is slowly progressing, has hypotonia (low tone), delayed gastric dumping, failure to thrive, developmental delay, cataracts corrected by surgery, g-tube feedings, and asthma. Shaun tires easily, gets sick a lot, has trouble swallowing, eats little by mouth (although loves his passie!), does not sit, crawl or talk yet, or does many other things that 15 month old children do. Shaun also has a gluten intolerance. Clinical picture presents as a mitochondrial disease, yet through all the tests, they cannot prove it. UVA genetics are sending us now to the Cleveland Clinic to see Dr. Parikh, one of the leading doctors in the mitochondrial field.

Shaun loves his family, is learning to speak a few sounds, enjoys playing with his brothers, talking on the phone and being the center of attention. He loves to be held, play with his therapists, going for walks, riding in the "burley" behind the bike and watching his brothers play at the park or anywhere outside. He is getting interested in books, pushing cars back and forth, playing with his brothers' guys, and watching his mommy in the kitchen. He loves his daddy putting him to bed, throwing him in the air, talking to him on the phone, and giving him cuddles throughout the day.

As we go through this journey, I will try to update on how he is, what is found for diagnosis or not found, ask for prayers, and give general updates. I hope this blog will inform you, encourage you, and maybe even help answer questions you may have. Please leave comments or questions and I will answer them as time allows!

Shaun before cataract surgery

 Shaun sharing ice cream at the fair with Daddy

4 months old

Shaun before getting tubes

Shaun after getting the MRI playing with his new favorite toy

Swallowing evaluation after a respiratory infection hospitalization

Shaun's first Birthday cake!

Shaun's 1st birthday picture

Shaun after the G-tube placement

at the park with big brother Scottie

on a hay ride at Great Country Farms in VA

Real with you.

Ok, so normally I am upbeat and excited in my postings but today is going to be honest.

It is hard for me to ask for help and I like to feel/look like I have it all together but Jesus is trying to grow me in this way~ allowing others to be close, see my vulnerability, and be the Hands and Feet of Jesus to our family. The first step is being honest... something that goes against my sin nature. It is difficult for me. I had reality hit today. The question was, "why doesn't Shaun sleep in his own room?" I came up with 2 main things, 1~ I am scared that he may wrap himself in his g-tube durning the night or pull it out and 2~ that Sarah died in her crib in the middle of the night and I am scared that the same thing will happen again without my knowing it. Both of these are rooted in FEAR. I thought I had dealt with this fear but as a good friend told me today that it will be a battle for the rest of my time here on earth. Why?~ because I am human and we live in a sinful world that has death. 

Another reality hit me today. I don't have it that bad and there are a lot of others who have it "worse". I say it like that because I don't consider Shaun's situation "bad" but it is trying. 

Why is it trying?~ because I had all these dreams and plans for him, dancing in my head, since the day we found out he was coming, that have since gone up in smoke. Now it is~ will he survive this? Will he be able to walk one day? Will he be able to eat on his own? Will we ever know what is causing this ailment in my precious baby? Could it happen to my other children as they grow? Am I strong enough to walk through this? Is our marriage strong enough for this? Then I look into his face and know that I am projecting onto him. He loves us, his brothers, his family. He delights in our gazes and coos at him. He is excited by our encouragement, and lives his day to his fullest. 

Then God met me in an unexpected way. In Sunday School we are learning about Community. Some call it Fellowship of Believers, other call it friends. These ladies are amazing to me. They pick me up when I am down. The ask the simple question, How are you? and genuinely want to know. I can be real to them and they are real with me. I feel safe. I am so thankful for each one God has placed in my life, just for right here and right now.  One of these women sent me a blog about another family with special needs. It was a father speaking about his weakness and how God met him there. To paraphrase he went to the Bible, the Instruction Book, to find out why things happen, why does 'needless' suffering exist, why do children have disabilities, the questions all of us ask and this is what he found. 

John 9:1-41.

"Rabbi, who sinned, this man or his parents, that he was born blind?" In other words, "Why did this happen~ what is the meaning of this~ who sinned here?" Its interesting how Jesus rarely answers the desciples' (or anyone's) question on their terms. Our questions about suffering are generally rooted in causes. What caused this to happen? Jesus answers, "It was not that this man sinned, or his parents..." So, neither assumption is right. Jesus was indicating this disability and form of suffering cannot be correlated with any specific sin. He responds to their question on his own terms, not with a cause but a purpose.

This disability has a purpose. "...that the works of God might be displayed in him." God's works are gloriously displayed in His creation. Psalm 139 beautifully describes God's supreme control in a baby's formation within the mother's womb. "Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord? (Exodus 4:11) When something goes wrong, He could stop it. Easily. But sometimes He decides not to. FOR A PURPOSE. 

  

 So pray for me, our family and Shaun. Pray that God will guide our path, show Himself to us during our struggles, pour out His mercy on us when we don't know if we can keep on. Pray that we as a family will keep our eyes upon the Lord, the Author and Finisher of our faith and that He will be glorified in our lives as we go through our ups and downs. May we be a testimony, give you encouragement and point you toward Jesus~  through our actions, words and deeds. This is my prayer.

I am not sure what the future holds, but I do know this. Our boy brings a special joy to our life, one that only he could bring. His brother's adore him, he melts his parents' heart daily, all that meet him love him. He is special and a glorious Gift from God. We are not promised any length of time with any of our children. I will try to live each day to the fullest with all my boys, because we never know when it may be our last. I will strive to give Shaun the best future Shaun can have, perhaps loosing it a few times (crying my eyes out until tears flow no more) along the way, but with God's help, make the tough decisions, go to all the appointments, work hard on therapy, keep trying to get him to take food by mouth, give him the most opportunities to grow and develop, and melt at the beautiful way he looks at me. 

We go to Cleveland to meet a new specialist in a little over a week. Pray for us, for wisdom, discernment, for fear to leave us, and right choices be made for Shaun. For us to continue running the race, marathon, and not to grow weary. For our marriage to be strengthened and our family to grow closer, knitting us together through trial and adversity, through everyday life. Then maybe we will have a glimpse into the purpose God has for our little boy.

Random Fun Pictures