I am so releaved to have my sister here for a few days. She flew in Tuesday after the MRI and is staying till Saturday morning. I miss her terribly and wish she could just stay forever. It is so nice to have her here.
Braedon finally came out of the anesthesia yesterday. It took about 1-2 hrs for him to calm down, he was SO violent, including punching and kicking, biting and screaming. It was a bad site; definitely not an anesthesia I will encourage again.
Today has been a little disappointing, Braedon has started to show signs of going backwards again. He has been highly aggitated all day and his temper has had total meltdowns at a drop of a hat. He has been very tired but too restless to sleep well. This afternoon I noticed his tummy was very large again and not quite as hard as last week but close. When I got home from errands, we had two loose stools again after having two yesterday that were more or less normal. :(
I am not too thrilled about this. I am so tired and desperately need some sleep. I have already changed his bedding once today and am praying that is it for the night. I need to sleep. I just put him down and am currently waiting for him to fall asleep since we are sharing a room right now.
Please continue to pray for us and for the doctors that they would start to acquire some answers. I have done a very small amount of research in the grand scheme of things and it is concerning and discouraging at the treatments and prognosis given. Please pray that God would keep Satan from influencing my mood and tearing down the hope I know I have in Christ Jesus to heal my son and protect him.
Goognight everyone and may God bless you and your families.
Wednesday, May 12, 2010
Monday, May 10, 2010
Quiet voices
Tonight it is quiet. I am feeling a bit anxious for tomorrow and for the next few months ahead. I have a feeling in my gut that is making me sick. I don't like it.
But as I sit here, I am hearing a voice and I had to share it with anyone that would listen. It said,
"Peace, I give you peace. Rest, I will comfort you. Pray, I will listen. Breathe, I will protect him. I love him more than you will ever love him and more than you will ever comprehend. It's ok, I know what is happening and what will happen. I have a plan and he is in it, you are in it, Soapy and Caileigh are in it. Take joy in knowing I love him and care for him and will not let you walk this alone."
Comforting words, and on that note, goodnight! :)
But as I sit here, I am hearing a voice and I had to share it with anyone that would listen. It said,
"Peace, I give you peace. Rest, I will comfort you. Pray, I will listen. Breathe, I will protect him. I love him more than you will ever love him and more than you will ever comprehend. It's ok, I know what is happening and what will happen. I have a plan and he is in it, you are in it, Soapy and Caileigh are in it. Take joy in knowing I love him and care for him and will not let you walk this alone."
Comforting words, and on that note, goodnight! :)
Sunday, May 9, 2010
Happy Mother's Day
I am so unbelievably tired and am heading to bed but I wanted to post a quick update about our week.
First, Happy Mother's Day to every mom out there! I hope yall had a wonderful day, relaxing and filled with love. I know for some this can be a hard day for one reason or another and I pray for you that this year the pain was not so overwhelming.
Today was a great day for me. We didn't do much, in fact it was very low key. No flowers, no cards (except one Caileigh made at my parents' church this morning), no brunch or special affairs. Just relaxation, a walk around Garden of the Gods and time enjoying my two precious children.
This past Tuesday, my mom went with my to a scheduled appointment for Braedon at Denver Children's Hospital. On the way there, we believed he was having a seizure of sorts. It was beyond frightening. We got to the hospital and they knew we were coming and were told to go straight to the ER. See, April 22nd Braedon started in with another episode of GI problems except this time they did not go away 4-5 days later. They are still happening. He vomits and has about 12 liquid stooled diapers a day.
Braedon was admitted Tuesday and they immediately performed a CT of his head and abdomen. There was nothing of extreme concern, he had an EEG performed and no seizure activity was reported but they can't rule out epilepsy. Upon talking with several doctors from many departments, countless labs had been requested, most coming from the Metabolic team. They are looking at a few very viable genetic disorders that would tie in his GI problems that he has had since birth (we now believe them to not be solely related to food allergies if at all) with the spell he had Tuesday.
--Tuesday before getting in the car I gave him a bath. He screamed for 10 minutes or so and then suddenly sat down in the corner and stared at the tub floor. He wouldn't respond to his name, my hands in front of him or toys. We took him out and he seemed to be in a daze. While putting him in the car he went very limp and we had to pull him into position and turn his head just to get him strapped in. --
We left the hospital Friday night but not before we got answers and a temporary plan on how to control his vomitting (the other could actually get worse with the medication they have him on). So far so good! We are two days into this treatment and no vomitting and very little diarrhea!!! Today he ate a little more and actually played a bit with his sister and was happy. We are hoping this treatment will work long enough to get some answers. It is not a medication that is safe long term so we need answers soon and realistic treatment plans.
Please pray for us as we step into this new season of our lives. I spent a large part of the morning researching hospitals that are leading in technology and research for metabolic and genetic testing/treatments. I have a few main locations in mind and am waiting to see what comes back from these tests to determine what steps to take next.
We were all set to move when Soapy gets a job and now we are kind of waiting; waiting to see what is wrong with Braedon and where the best treatment is for him. It is hard to wait patiently and Soapy is getting very discouraged that interviews are not coming in yet but I believe God is waiting to give us a job offer until we know what is wrong with our son. As it stands, daycare will not watch Braedon because of his constant condition of being sick; even though it isn't contagious. They don't have the time to devote or the extra person to devote to him when he is getting sick every few minutes.
Please pray for Braedon that his body would stay strong through all the waiting and testing. He has an MRI Tuesday at 1230 and they will have to sedate him (the last few times he has not done real well with sedation, his O2 sats. drop). We won't know for about a month what the genetic tests will begin to show. We were hoping to be moving to a new job, wherever that may be, at the end of this month once Caileigh is out of school. Please pray for Soapy that God would give him a calm and renew his hope in Him. Please pray for me that I would be the mother and wife I am needed to be right now. Please pray that I am not only able to care for Braedon but also to help support Caileigh, she is showing signs of anxiety from the stress and fear of what is wrong with her brother; she loves him so very much.
Thanks to everyone so far that has been praying for our family and for our son. The prayers mean so much to us. I am going to be talking about an idea I have for raising money to support our family and a charity that is very dear to my heart. The hospital trips out of town are getting very costly and I need to find a way to help offset that cost. Please don't be put off by the advertising or mention of earning money, it is truly to help our son and for that I am not sorry.
Happy Mother's Day everyone and have a blessed week!
First, Happy Mother's Day to every mom out there! I hope yall had a wonderful day, relaxing and filled with love. I know for some this can be a hard day for one reason or another and I pray for you that this year the pain was not so overwhelming.
Today was a great day for me. We didn't do much, in fact it was very low key. No flowers, no cards (except one Caileigh made at my parents' church this morning), no brunch or special affairs. Just relaxation, a walk around Garden of the Gods and time enjoying my two precious children.
This past Tuesday, my mom went with my to a scheduled appointment for Braedon at Denver Children's Hospital. On the way there, we believed he was having a seizure of sorts. It was beyond frightening. We got to the hospital and they knew we were coming and were told to go straight to the ER. See, April 22nd Braedon started in with another episode of GI problems except this time they did not go away 4-5 days later. They are still happening. He vomits and has about 12 liquid stooled diapers a day.
Braedon was admitted Tuesday and they immediately performed a CT of his head and abdomen. There was nothing of extreme concern, he had an EEG performed and no seizure activity was reported but they can't rule out epilepsy. Upon talking with several doctors from many departments, countless labs had been requested, most coming from the Metabolic team. They are looking at a few very viable genetic disorders that would tie in his GI problems that he has had since birth (we now believe them to not be solely related to food allergies if at all) with the spell he had Tuesday.
--Tuesday before getting in the car I gave him a bath. He screamed for 10 minutes or so and then suddenly sat down in the corner and stared at the tub floor. He wouldn't respond to his name, my hands in front of him or toys. We took him out and he seemed to be in a daze. While putting him in the car he went very limp and we had to pull him into position and turn his head just to get him strapped in. --
We left the hospital Friday night but not before we got answers and a temporary plan on how to control his vomitting (the other could actually get worse with the medication they have him on). So far so good! We are two days into this treatment and no vomitting and very little diarrhea!!! Today he ate a little more and actually played a bit with his sister and was happy. We are hoping this treatment will work long enough to get some answers. It is not a medication that is safe long term so we need answers soon and realistic treatment plans.
Please pray for us as we step into this new season of our lives. I spent a large part of the morning researching hospitals that are leading in technology and research for metabolic and genetic testing/treatments. I have a few main locations in mind and am waiting to see what comes back from these tests to determine what steps to take next.
We were all set to move when Soapy gets a job and now we are kind of waiting; waiting to see what is wrong with Braedon and where the best treatment is for him. It is hard to wait patiently and Soapy is getting very discouraged that interviews are not coming in yet but I believe God is waiting to give us a job offer until we know what is wrong with our son. As it stands, daycare will not watch Braedon because of his constant condition of being sick; even though it isn't contagious. They don't have the time to devote or the extra person to devote to him when he is getting sick every few minutes.
Please pray for Braedon that his body would stay strong through all the waiting and testing. He has an MRI Tuesday at 1230 and they will have to sedate him (the last few times he has not done real well with sedation, his O2 sats. drop). We won't know for about a month what the genetic tests will begin to show. We were hoping to be moving to a new job, wherever that may be, at the end of this month once Caileigh is out of school. Please pray for Soapy that God would give him a calm and renew his hope in Him. Please pray for me that I would be the mother and wife I am needed to be right now. Please pray that I am not only able to care for Braedon but also to help support Caileigh, she is showing signs of anxiety from the stress and fear of what is wrong with her brother; she loves him so very much.
Thanks to everyone so far that has been praying for our family and for our son. The prayers mean so much to us. I am going to be talking about an idea I have for raising money to support our family and a charity that is very dear to my heart. The hospital trips out of town are getting very costly and I need to find a way to help offset that cost. Please don't be put off by the advertising or mention of earning money, it is truly to help our son and for that I am not sorry.
Happy Mother's Day everyone and have a blessed week!
Wednesday, April 14, 2010
Photography
Soapy bought me a new camera!! I will admit, it is way more than I ever expected and way more camera than I actually need to learn on, but.....I am persuing a hobby/obsession with photography and he didn't want to buy one camera now and down the road hear how I "needed" a better camera to produce better product. Plus, there was an AMAZING deal on the one he bought so he jumped in with two feet and the sales person saw him coming a mile away! :)
I am just learning how to use Photoshop Elements and Picasa, along with the editing software that came with my camera. I am trying out all Adobe programs before I commit to purchasing one or another. I feel that is important to ensure I get a program I can use and understand.
Last Saturday we took the kids out to the playground/park here in town. It was the first time I got to play around with my new Nikon D40. Previously I have only had an Olympus P&S and my mom's old film Minolta camera. She doesn't have the instruction manual to it and I could not find one so I was getting very frustrated needless to say trying to learn her camera.
Saturday I did learn a lot about my camera. I am learning about how to adjust the aperture, ISO, white balance and how being closer to your subject really is better. Here are two pictures I took, I have not edited them yet....I did but for some reason it won't upload the edited photos...working on that.
Last Saturday we took the kids out to the playground/park here in town. It was the first time I got to play around with my new Nikon D40. Previously I have only had an Olympus P&S and my mom's old film Minolta camera. She doesn't have the instruction manual to it and I could not find one so I was getting very frustrated needless to say trying to learn her camera.
Saturday I did learn a lot about my camera. I am learning about how to adjust the aperture, ISO, white balance and how being closer to your subject really is better. Here are two pictures I took, I have not edited them yet....I did but for some reason it won't upload the edited photos...working on that.
Thursday, April 8, 2010
Please Pray for Hailey
A friend of mine that I have met through this wonderful blog world lives in Denver, CO. Her daughter Hailey is 4 and dealing with some very serious conditions. Some of them are seizures and a condition called encephalopathy (I hope I spelled that right). SHe is such an amazingly sweet and giving little girl.
Robin is a wonderful mom. She has three children, one of them is in Heaven. Her husband Jeremy is awaiting medical seperation from the military after coming back from the Middle East. They are having a really rough time with getting the disability benefits he deserves and because of Hailey's condition, their medical care is not able to help after a certain point is reached. They are very tired, worn, frustrated and heart broken.
Three days ago, Hailey went into the hospital with another episode. This is the worst they have ever seen her. Early this mornign the catheter was lost in her arm and now is lost somewhere in her body. THe doctors aren't sure what to do to find it and once they do how to remove it. There is risk of it being in her heart or lungs.
At noon today she crashed hard. She stopped breathing and technically died. The rapid response team was able to stabilize her and she is not intubated and in ICU. She is awaiting a CT Scan, an ultrasound, EEG, EKG, and bloodwork. Please pray for Hailey and for her parents. Please pray for strength and peace. Please pray for the doctors and medical staff that they would be able to figure out her problems and that they would act swiftly and safely to bring Hailey out of this.
For up to date information, Robin's blog is http://www.visbalfamily.blogspot.com/ . She is also on Twitter and Facebook under robinvisbal. She can't update her blog that often but said that she wil be tweeting as often as possible to keep current prayer requests.
Thanks so much.
Robin is a wonderful mom. She has three children, one of them is in Heaven. Her husband Jeremy is awaiting medical seperation from the military after coming back from the Middle East. They are having a really rough time with getting the disability benefits he deserves and because of Hailey's condition, their medical care is not able to help after a certain point is reached. They are very tired, worn, frustrated and heart broken.
Three days ago, Hailey went into the hospital with another episode. This is the worst they have ever seen her. Early this mornign the catheter was lost in her arm and now is lost somewhere in her body. THe doctors aren't sure what to do to find it and once they do how to remove it. There is risk of it being in her heart or lungs.
At noon today she crashed hard. She stopped breathing and technically died. The rapid response team was able to stabilize her and she is not intubated and in ICU. She is awaiting a CT Scan, an ultrasound, EEG, EKG, and bloodwork. Please pray for Hailey and for her parents. Please pray for strength and peace. Please pray for the doctors and medical staff that they would be able to figure out her problems and that they would act swiftly and safely to bring Hailey out of this.
For up to date information, Robin's blog is http://www.visbalfamily.blogspot.com/ . She is also on Twitter and Facebook under robinvisbal. She can't update her blog that often but said that she wil be tweeting as often as possible to keep current prayer requests.
Thanks so much.
Wednesday, April 7, 2010
Results and stuff...
This morning I woke up to hearing words like, "delays" and "closures" on the radio. I layed there in bed thinking, SERIOUSLY??!!? I got up and sure enough the white stuff was coming down hard. In no time we had about 2 inches and then suddenly the sun came out and it stopped...then it started..then it stopped and started...you know.
Caileigh's school was not delayed unfortunately so off to school she went but before I could walk out the door to drive her to school, the phone rang.
It was Dr F, the GI specialist in Denver. He apologized for me getting some incorrect information and the need to worry based on how the initial results were given to me. He said all tests came back...NORMAL!!! Praise God it was not this GI disease we were all worried about, and my mother in law's fear (and in the back of all our minds) of cancer. The bad thing is, he has no idea what to tell me. He can't explain the symptoms or the irritation.
So the decision for now is to do nothing. When Braedon goes back into another episode of this we will pack our bags and go to Denver for 2-3 days so Braedon can be hospitalized. Not really what I want but there is a degree of relief knowing they will test him in house on food and monitor his stats, taking samples of stool and what have you while we are there. I just have to wait for another episode to pop up.
So thank you everyone for praying for the results to come back clear. Please pray he goes into his next episode when Soapy can be home and help me with Caileigh or she will have to miss school (or something, just not sure what that will be yet) and that the doctors can see first hand what is happening and can help us solve this mystery. It gets pretty frustrating watching him in pain and holding him down to change his diaper and put cream on him when he looks like he has 2nd degree burns all over his bottom area.
Other news--Love A Thon results: Angela and Brittany I am so sorry that I have slacked on getting this sorted out, things have just been overwhelming the last few weeks. I have decided to give you BOTH a gift card for Mary Kay!! Please email me and give me your contact information and I will get it to you. I have a website but am having trouble with it right now, it should be up and running soon and then you can order from there. :) Check out these girls sites, they are super cute and have some great ideas in them!
Well, that is all for now! Later I am going to put up some pictures (FINALLY) of Easter and random things the kids have been up to lately. Have a great day y'all!!! :)
Caileigh's school was not delayed unfortunately so off to school she went but before I could walk out the door to drive her to school, the phone rang.
It was Dr F, the GI specialist in Denver. He apologized for me getting some incorrect information and the need to worry based on how the initial results were given to me. He said all tests came back...NORMAL!!! Praise God it was not this GI disease we were all worried about, and my mother in law's fear (and in the back of all our minds) of cancer. The bad thing is, he has no idea what to tell me. He can't explain the symptoms or the irritation.
So the decision for now is to do nothing. When Braedon goes back into another episode of this we will pack our bags and go to Denver for 2-3 days so Braedon can be hospitalized. Not really what I want but there is a degree of relief knowing they will test him in house on food and monitor his stats, taking samples of stool and what have you while we are there. I just have to wait for another episode to pop up.
So thank you everyone for praying for the results to come back clear. Please pray he goes into his next episode when Soapy can be home and help me with Caileigh or she will have to miss school (or something, just not sure what that will be yet) and that the doctors can see first hand what is happening and can help us solve this mystery. It gets pretty frustrating watching him in pain and holding him down to change his diaper and put cream on him when he looks like he has 2nd degree burns all over his bottom area.
Other news--Love A Thon results: Angela and Brittany I am so sorry that I have slacked on getting this sorted out, things have just been overwhelming the last few weeks. I have decided to give you BOTH a gift card for Mary Kay!! Please email me and give me your contact information and I will get it to you. I have a website but am having trouble with it right now, it should be up and running soon and then you can order from there. :) Check out these girls sites, they are super cute and have some great ideas in them!
Well, that is all for now! Later I am going to put up some pictures (FINALLY) of Easter and random things the kids have been up to lately. Have a great day y'all!!! :)
Tuesday, April 6, 2010
Waiting....
We are still waiting. We went to Denver last Thursday, April 1st for Braedon's appointment for his colonoscopy and endoscopy. They did it and he did farely well coming out of it, we were able to go home that day. YAY!
What I didn't like was the consult afterwards. The doctor came and found me in the lobby and went over the pictures. She said the colon did not look good. I asked what could cause what she saw and she said she couldn't tell me, not until after the results come back from the biopsies but that they took several good spots so they should get the information they need. She told me to start calling first thing Monday morning for results so I did. I left message after message only to get a reply that afternoon that the nurse talked to the doctor and he wants to talk to me personally and will call me when he has a moment in between patients. It is Tuesday, still no word, I only know after I called this morning that it can take him 48 hours to call me back.
I am trying very hard not to get frustrated and angry, though I want to be right now. I am trying very hard not to worry and be scared. I am trying very VERY hard to give it to God and let Him do with it as He wills. A woman at Target tonight stopped to say hi to Braedon. She was not able to ever have children but she loves them so much. He was very happy and social. They played peek-a-boo for a bit and then she looked at me and asked if he was healthy. I was somewhat puzzled and told her for the most part but that we were actually waiting for results. She immediately put her hand on him and started praying and all I could do was stand there and hold him and cry. It touched me so much that a perfect stranger felt lead to pray for him.
So tonight I am waiting and praying for peace and comfort. I am waiting on God to show us what miraculous things he has in store for Braedon. I believe He has a great work to do in by son and I am excited to see how it all unfolds.
What I didn't like was the consult afterwards. The doctor came and found me in the lobby and went over the pictures. She said the colon did not look good. I asked what could cause what she saw and she said she couldn't tell me, not until after the results come back from the biopsies but that they took several good spots so they should get the information they need. She told me to start calling first thing Monday morning for results so I did. I left message after message only to get a reply that afternoon that the nurse talked to the doctor and he wants to talk to me personally and will call me when he has a moment in between patients. It is Tuesday, still no word, I only know after I called this morning that it can take him 48 hours to call me back.
I am trying very hard not to get frustrated and angry, though I want to be right now. I am trying very hard not to worry and be scared. I am trying very VERY hard to give it to God and let Him do with it as He wills. A woman at Target tonight stopped to say hi to Braedon. She was not able to ever have children but she loves them so much. He was very happy and social. They played peek-a-boo for a bit and then she looked at me and asked if he was healthy. I was somewhat puzzled and told her for the most part but that we were actually waiting for results. She immediately put her hand on him and started praying and all I could do was stand there and hold him and cry. It touched me so much that a perfect stranger felt lead to pray for him.
So tonight I am waiting and praying for peace and comfort. I am waiting on God to show us what miraculous things he has in store for Braedon. I believe He has a great work to do in by son and I am excited to see how it all unfolds.
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