Merry Christmas!!

Charlottesville, tomorrow...

We will be taking another trip to Charlottesville tomorrow so that we can get the list of procedures done and off to the labs. Shaun will get a skin biopsy and lumbar puncture (spinal tap) under sedation. Keep him in prayer for the next couple of days as the spinal tap can cause headaches.
For the last couple of weeks Shaun's been having a hard time keeping down his feeds.  He's been throwing up lots. I am able to keep him hydrated enough but he is not putting on any weight. We have tried erythromycin for gastric dumping, Docolax for pooping regularly, changing the way we feed him, the amount, time and adding water to it. He seems to do a little better when his formula is cut with clear liquid. Talking to a nutritionist, we are going to try and put him on a different formula, whey based, to see if bulk in his belly is the problem. We are changing pediatricians with him after careful consideration, since his old one has all our family knowledge but feel like the closer office and new eyes may be what Shaun needs most. It will be a challenge to get the new doctors up to speed, knowing Shaun, his case, what his care should be, me, ect. but having the office in our town will be a major help. We will be able to go in for weight checks regularly, they admit to the hospital I prefer and have a new set of eyes to look at what is going on with Shaun and maybe have some new ideas how to help him out. Pray for all these changes! God is good. A friend and I came before Him last week and prayed for Shaun to be able to poop regularly and starting that next morning, Shaun has a b.m. every morning!!  Who knew I would be so excited about poo! I will update on how the procedure went. Thank you for your prayers!

Shaun went to Disney and Universal!!

Universal Studios Islands of Adventure!

Disney Hollywood Studios!

Universal Studios

Disney's Magic Kingdom~ Thanksgiving Day

Back to Universal Islands of Adventure!

We took our family to Florida for Thanksgiving this year! It was amazing... our first family vacation! Our O.T. (occupational therapist) told me about getting special passes at Disney and Universal for Shaun. I have to admit, Disney is WONDERFUL with special needs. They give you a pass and your whole party gets to go in the fast line too! Shaun had a good time, although one day he tried to loose his glasses~ but we found them! Universal didn't do so much for special needs. They let me take Shaun's stroller in the lines but that was it. We had a great trip all around though. And the memories the boys made and the smiles on their faces was sure worth the trip! I think we will have to do this again!

Thanksgiving

As October closes and November begins, thankfulness is on my heart. I thank God for giving our family Shaun, Stephen and Scott and stretching our family in belief, perseverance, and love. Shaun is a precious gift and helps us remember that it is not all about "me". But that's sometimes hard... especially when you seem to be asking for help or prayer over and over again... 

Our Sunday school class has me thinking about what it means to be a church. Or I suppose, whether you are in a church or not, what it means to be a community. We have been so thankful for the many friends who desire and insist on helping us. Yet there are times when I am left feeling quite shameful for accepting the help. Perhaps it is my own pride and my own desire to not put any pressure on others or have them work harder on my account. I think it also has to do with other people’s idea of how I should be responding to this situation. Everyone deals differently with crisis situations. Everyone’s needs are a little different. I know that we couldn’t do this without their help. And should a good friend of mine be in the same situation, I would not only desire to help, but I would feel hurt by their rejection of it. What is the church if we can’t help each other in a time of need? We are to rally around each other (no matter what smaller church/community  you “belong” to) and uphold the body with our various gifts. It’s how we bless one another and receive blessing in return. It’s been said “We are the hands and feet of Jesus.” It’s how we love each other. And we have been so blessed.

Thank everyone for all the love and support you have given our family and you all have special spots in our hearts.

We are Home

We were released from the hospital today on 4 hour breathing treatments, antibiotics and tamaflu. Shaun is doing better, coughing up less flem, but still breathing hard. We will follow up with our doctor on Thursday and pray for a clean bill of health. He had the flu on top of pneumonia and breathing difficuties. We were safe from the storm "Sandy" and didn't even have the power flicker! Praise be to God!
Coming home was good. I missed Peter and the other boys as did Shaun. Friends have poured out their love to our family, offering meals, to help with kids, or what ever needed to be done. I haven't ever felt more part of a community or loved than during these trials. Thank you to all who prayed, offered help, meals, or support. We love you!

Admitted

As you know, Shaun has been struggling with pneumonia. His antibiotics haven't seemed to be working and today he was in significant respiratory distress - with his lips turning blue.  After being seen in the Emergency Department at Inova Loudoun Hospital, Shaun was admitted tonight with a bad case of the flu - his second bout of it this season.  Not sure what this means about his appointment with cardiology tomorrow, but perhaps he will get seen while he is in the hospital.  Please pray for Shaun to clear this infection from his body, to get rest and to gain strength.  Pray for Mommy - who is also sick and so very tired from constant care-giving.  Pray, also, for Peter and the boys at home as they miss their Mommy and Shaun.  More details to come soon.

The Newest (with sickness)

Last night was a difficult night... Shaun had a hard time sleeping, not doing much of it in fact, and throwing up at least 6 times... Dad took the brunt of it. I stayed up with him though through the night taking little power naps of about 20 minutes in between his wrenching body. I am so tired of sickness. I wish Jesus's healing hand would wipe it all away and keep us healthy.

All that being said, I took Shaun to have an x ray of his chest on Thursday. His secretions were very thick and green and smelled terrible so I knew he had an active infection, along with raging fevers near 104 degrees. The x ray showed that he had a possible pneumonia on his lower left lung and that he has a dialated heart and vessels, a new finding.

This is what the report says; "interval development of CHF/fluid overload with probable alveolar edema of the lower left lobe and possibly underlying effusion." They also say that cardiomegaly unchanged. There has been interval development of interstitial edema with cephalization of pulmonary vascularity and possible left underlying effusion/airspace disease. Cardiac pacer lead is appreciated and unchanged.

So what I know is that they say it is not life threatening right now but they recommend us to see a cardiologist.  Our doctor got us in on Monday. To me that means it is very serious... there and again, we are dealing with the heart. I guess it would be serious. Pray for Shaun that he can get over this bug, his heart is ok, and he can stay well for a good stretch of time. Pray that his bowels move, his stomach dumps his food appropriately and that the "perfect storm" holds off until we can get home on Monday.

Fever and Thrush

Shaun has been battling lots of respiratory viruses once again this fall. I am not sure but I think the stress it put on his body last year "turned on" this disease process in him. I am praying that it does not hurt him again and we don't regress from the steps forward we have made. The last two weeks Shaun has battled congestion, sinus infection, and mild fevers. Yesterday he woke up with 102 temperature, still congested, and white in his mouth. I decided to take him to the doctor because I am worried about him being susceptible to pneumonia. His lungs sounded ok, but his upper airway continued to crackle and he is spitting out an amazing amount of slime. The white in his mouth is thrush, a fungal infection from all the antibiotics he's been taking. He has to get oral nystatin 4 times a day, 1 mL in each cheek. He doesn't like it very much. Last night he had a lot of trouble clearing it and choked on it a few times. We were given a suction machine and luckily his occupational therapist, Leslie, will be here today to teach me to use it. He also spiked his fever to 103.8 and I was really worried. I gave him some cold pedialite through his g-tube and tried to keep a cool cloth on his head to help him out while the Motrin kicked in. Finally he was able to get comfortable, after shallow breathing and tons of mucus and shakes about 45 minutes after taking the Motrin. He just needs to get better. Stay better. Have his immune system strengthened.

I am really battling fear right now. I see his ability to swallow diminishing and I am scared. He needs to protect his airway. I don't want the suction machine... Sarah had to have one.  Reality hit when I looked back at my pictures from 1 year ago... Shaun has lost some strength in his core... What does that mean? Are we ever going to get any answers? Is it always going to be more tests, more doctors, specialists, problems with even the most basic functions of our body? WHY does Shaun have to endure this?? Its not fair!! But life isn't fair. There is sin in this world. What am I going to make of today?

God, today I choose to look to You for strength. I choose to love my family, our baby boy, to have a good attitude and try my best to give him my best. Help me Father to look to you when I am downcast or heavy laiden. You are my strength when I am weak, the treasure I seek. You are my all in all. Help me to minister to my family, show Your mercy to them and give me the wisdom to know when I am over my head and he needs to go to the doctor. In Jesus' name. Amen.

Tests...

Yesterday, Shaun had an EEG to watch his brain waves. This is just one of the many tests that were ordered when we went to Cleveland to meet the specialist. It started with sleep deprivation; Shaun had to stay awake until 1 am then could sleep until 4 am and then had to stay awake until the test. We were scheduled for 8 am but didn't end up getting to the clinic until 9:30 because the order got lost somewhere between the fax machine in Woodstock and the one in Winchester... maybe its in cyberspace somewhere..

 Shaun quickly fell asleep when we were in the room and they were able to hook him up with ease.

 The test lasted around 45 minutes and both mom and boy slept. They then wanted to get some awake footage too, but Shaun was a drowsy customer. We are trying to get back on normal schedule now but he is wanting to be up in the middle of the night... Pray for sleep!!

Today, we went for an ultrasound of his abdomen and renal system. Shaun was once again a trooper as they require fasting for 4 hours prior and a big shot of 6 oz of water prior to the test. He wanted to play in the gel so Mom had to hold his hands.

The technician couldn't tell me much but she did say that all his organs are in the right spot and that they look to be the correct size! Praise God.

Now for the rest of the tests...

Glasses!!

Shaun in his new glasses!

big brother love!!

Shaun playing at the kitchen in his walker

Shaun got his glasses yesterday. He is trying to adjust to them but is having a hard time. He wants to rip them off his face as soon as they are on. His brain though needs to learn to see through them so he will have good sight, its going to take some training though.  We can get him to keep them on for a few minutes if we hold his hands or distract him with things but this will be a hard transition... Pray that he learns quickly to keep them on and that his brain will adapt to being able to really see!

Sick again.

Shaun had a cold for the past 3 weeks. He was put on two antibiotics and a steroid, finished their course, and seemed to be doing better... that is until this past weekend. His nose started to run. Oh no. Here we go again. Today, he is coughing up green flem, wheezing, and less active than normal. Yesterday was about the same. He isn't able to sleep well.   He doesn't want to eat. Its only the beginning of cold and flu season and I am already done with it. I need more patience.

Pray for Shaun: that his immune system will be strengthened, that he will be able to expel the cold virus quickly and without hospitalization or medication. Pray that he will be able to get well and continue to make advances in his development. Pray he will want to eat by mouth.

Pray for us: for patience, understanding and rest. Pray that we stay well and are able to take care of Shaun to the best of our ability, giving him the best opportunity to get/stay well. 

Thank you for your prayers and encouragement. 

Cleveland

Monday, Peter, Shaun and I trekked up to Cleveland, Ohio to see a new specialist. Dr. Sumit Parikh is a neurogenetisist specializing in mitochondrial disease. This appointment was the initial visit where he got background information, ordered more tests, developed rapport with Peter and I and learned who Shaun is. Shaun will need to have an EEG, get a spinal tap and skin biopsy, have more blood and urine testing. Through these tests we will hopefully rule out most other diagnosis' on his possibility list.

Shaun is doing much better from his bout with bronchiolitis. He is breathing normally, has much less mucus, and is starting to be more active again. Thank you for your prayers for quick healing!

 Gains Shaun has made this week are getting stronger at sitting with support, reaching out to catch himself from toppling over, and army crawling!! He can sure move around and getting faster too. He still prefers to be held and cuddled, but every once in a while I can put him down for a bit (just have to watch closely to make sure he doesn't go anywhere!) He is enjoying the extra attention from Grammy Mari and Aunt Krissy. They came down to visit and watch the big boys while Peter and I took Shaun to Cleveland. We also cut Shaun's hair this week (his 2ond haircut) and he looks so grown up! He is showering us with smiles and coos. He loves talking on the phone, especially if someone is actually talking back.  I just love this boy and the smiles he gives out capture his momma's heart.

Dr. Parikh is a leading doctor in the mitochondrial feild. You can learn more about him or the disease here.

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.