Wednesday, December 26, 2012
Sunday, December 16, 2012
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!
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!
Monday, November 26, 2012
Shaun went to Disney and Universal!!
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| Universal Studios Islands of Adventure! |
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| Disney Hollywood Studios! |
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| Universal Studios |
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| Disney's Magic Kingdom~ Thanksgiving Day |
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| 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!
Wednesday, November 14, 2012
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.
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.
Tuesday, October 30, 2012
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!
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!
Monday, October 29, 2012
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.
Saturday, October 27, 2012
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.
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.
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