We had an awesome turnout two Saturdays ago for Isaiah's fundraiser. A HUGE thank you to Holly Boykin for organizing everything. Thank you to all who came and gave generously from your hearts. We cannot even begin to express our gratitude. We also had a huge miracle happen when several families stepped forward and provided a new washer/dryer for us. God has been so good to us and continues to provide for us even when we are not faithful in asking for His help. We continue to walk this journey with the strength from your prayers.
We were recently back down at CHOP Main for several appointments. Pulmonary was satisfied with Isaiah's improvement, but will continue to monitor him for awhile. We saw another orthopaedic specialist, Dr. Lee, about Isaiah's left arm. He was incredibly supportive and understanding and wished he could give us better news. But, the reality is there is nothing he can do to improve the left arm. It is what it is, and he was very happy with how Isaiah uses it. Pray that as Isaiah continues to grow, that we will know how to encourage him to use his differences for the glory of God.
We also revisited the feeding clinic. I think this will be the last time we go down there for the clinic. They were not much help and pretty much shrugged their shoulders because they have no idea why Isaiah doesn't eat or why he throws up daily. It was a very frustrating meeting. We are going to look into some other feeding clinics, like Good Shepherd and Hershey. Please pray for wisdom as we choose.
At the moment we have a need for help on Tuesday mornings. I go to a women's Bible study every Tuesday morning. We are entering flu season and we don't want to expose the boys to any more germs than we have too. The times would be from 8:30am-12pm. The boys are very easy and Isaiah does NOT have to be hooked up to anything while I am gone. Please let me know if anyone can help.
I know some of you may still be interested in ordering from 31 Gifts to support Isaiah's fundraiser. Holly Boykin will still be taking orders until the end of the month. All of her profits she is donating to Isaiah. To place an order, you can go online to her website at www.mythirtyone.com/hollyb, or you can call her directly at 267-375-9171. Thank you again for all of your help and support.
Thursday, October 21, 2010
Sunday, October 10, 2010
FUNDRAISER--RECYCLE YOUR OLD GOLD & SILVER
Dear Friends and Family,
You are invited to a Gold & Silver Recycling Event!! Our dear friend, Holly Boykin, decided out of the goodness and kindness of her heart to give a wonderful gift to Isaiah. She is doing a fundraiser to help with costs that we keep accruing with Isaiah. We cannot thank Holly enough for the love she has shown to our family.
THIS IS WHAT HOLLY'S FLYER/INVITATION STATES:
HOW DOES IT WORK? Bring your unwanted gold, silver, or platinum, (any amount, any color, any karat) and a licensed gold buyer will evaluate each piece for karat quality. It does not matter if the jewelry or items are broken. The value of your metal is determined by overall metal content and weight. There is no pressure and no obligation. If you are content with the appraisal, you will be paid on the spot! At the end of the event, the gold buyer will be donating a percentage of the payouts to the Miller Family.
There will also be a Thirty-One Gifts vendor set-up at the fundraiser. 100% of the commissions will be donated to The Miller Family. For more information, please visit www.mythirtyone.com/hollyb.
WHEN IS IT: Saturday, October 16, 2010 from 9:00 AM-1:00 PM
WHERE IS IT: Mr. B’s Coffeehouse – Rm 218, 820 Route 113 Souderton, PA, 18964. Mr. B's is on the backside of Calvary Church of Souderton. Please contact Holly Boykin at 267-375-9171 with any questions regarding this fundraiser, or if you can’t attend but would like to donate jewelry or gift cards.
Holly will be holding a *RAFFLE*. For every gift card that you bring for The Miller family (gas, grocery, supercenter, etc.) you will be entered into a raffle for some great prizes!
Hope you all can come!
Chris, Joy, Josiah, and Isaiah Miller
For the actual flyer, email us at isaiahsjourney@yahoo.com, and I will send you the link. I was unable to put the actual flyer on the blog.
P.S. If you have any friends, family, or businesses that would like to support Isaiah, please print and pass the flyer along to them, once I send it to you. We are trying to post the flyer wherever we can. Also, feel free to forward the blog on to whomever may be interested. Thank you.
You are invited to a Gold & Silver Recycling Event!! Our dear friend, Holly Boykin, decided out of the goodness and kindness of her heart to give a wonderful gift to Isaiah. She is doing a fundraiser to help with costs that we keep accruing with Isaiah. We cannot thank Holly enough for the love she has shown to our family.
THIS IS WHAT HOLLY'S FLYER/INVITATION STATES:
HOW DOES IT WORK? Bring your unwanted gold, silver, or platinum, (any amount, any color, any karat) and a licensed gold buyer will evaluate each piece for karat quality. It does not matter if the jewelry or items are broken. The value of your metal is determined by overall metal content and weight. There is no pressure and no obligation. If you are content with the appraisal, you will be paid on the spot! At the end of the event, the gold buyer will be donating a percentage of the payouts to the Miller Family.
There will also be a Thirty-One Gifts vendor set-up at the fundraiser. 100% of the commissions will be donated to The Miller Family. For more information, please visit www.mythirtyone.com/hollyb.
WHEN IS IT: Saturday, October 16, 2010 from 9:00 AM-1:00 PM
WHERE IS IT: Mr. B’s Coffeehouse – Rm 218, 820 Route 113 Souderton, PA, 18964. Mr. B's is on the backside of Calvary Church of Souderton. Please contact Holly Boykin at 267-375-9171 with any questions regarding this fundraiser, or if you can’t attend but would like to donate jewelry or gift cards.
Holly will be holding a *RAFFLE*. For every gift card that you bring for The Miller family (gas, grocery, supercenter, etc.) you will be entered into a raffle for some great prizes!
Hope you all can come!
Chris, Joy, Josiah, and Isaiah Miller
For the actual flyer, email us at isaiahsjourney@yahoo.com, and I will send you the link. I was unable to put the actual flyer on the blog.
P.S. If you have any friends, family, or businesses that would like to support Isaiah, please print and pass the flyer along to them, once I send it to you. We are trying to post the flyer wherever we can. Also, feel free to forward the blog on to whomever may be interested. Thank you.
Tuesday, October 5, 2010
HE'S WALKING...
It's been awhile since I've had the chance to update. Sorry about that! Well, just to quickly let you know what's been going on---Isaiah started cruising furniture around 15 months and then took off walking after he received his foot braces in July. He's been running ever since, at least trying to! He loves chasing his older brother and torturing him. He is a very busy little boy with a bigger than life personality!
Unfortunately, Isaiah continues to refuse to eat and rarely drinks. He is on tube feeds 3 times a day. He also continues to throw up daily. Chris and I don't get much sleep and often end up with much more work than we would like. The doctors have no idea why he continues to throw up like this. He is already on medications for reflux. The current doctors suggest that we see go see an allergist as well as a GI motility specialist. We also have to decide soon whether or not we are going to take Isaiah to an intense feeding clinic to help retrain him to eat. We have 2 options, neither of which are easy or inexpensive. Please pray that we have the wisdom to pick the right program for Isaiah.
Right now, we have 3 pressing needs:
1) Our washer and dryer are struggling to keep up with the insane amount of laundry we have to do on a daily basis because of Isaiah's vomiting. Our dryer is rusting on the inside, causing rust stains on clothing. Then, our washing machine broke on Monday, but Chris thinks he will be able to fix it temporarily. However, we are in great need of a heavy duty clothes washer and dryer.
2) We need to figure out how to address Isaiah's eating issues. We don't know what to do and not sure which clinic to take him to. They both require alot of time, commitment, and money.
3) We need home care for Isaiah to be approved for 16 hours a week. I am going to a job fair on October 19 and hope to enter back into the nursing work force. Pray that I know how to coordinate Isaiah's schedule and what nursing job to accept. I need something that will be flexible and understanding with our situation. We would also love to put Josiah into preschool, but not sure how to do this at this time.
Please keep your eyes open for information regarding an upcoming fundraiser for Isaiah on Saturday, October 16, 2010. It will be held at Calvary of Souderton, room 218 off of Mr. B's, from 9am-1pm. Look forward to seeing you there.
Thank you for all your love and support. Please enjoy the video below. (You will need to go to the blog website to see the video) http://isaiahs-journey.blogspot.com
Unfortunately, Isaiah continues to refuse to eat and rarely drinks. He is on tube feeds 3 times a day. He also continues to throw up daily. Chris and I don't get much sleep and often end up with much more work than we would like. The doctors have no idea why he continues to throw up like this. He is already on medications for reflux. The current doctors suggest that we see go see an allergist as well as a GI motility specialist. We also have to decide soon whether or not we are going to take Isaiah to an intense feeding clinic to help retrain him to eat. We have 2 options, neither of which are easy or inexpensive. Please pray that we have the wisdom to pick the right program for Isaiah.
Right now, we have 3 pressing needs:
1) Our washer and dryer are struggling to keep up with the insane amount of laundry we have to do on a daily basis because of Isaiah's vomiting. Our dryer is rusting on the inside, causing rust stains on clothing. Then, our washing machine broke on Monday, but Chris thinks he will be able to fix it temporarily. However, we are in great need of a heavy duty clothes washer and dryer.
2) We need to figure out how to address Isaiah's eating issues. We don't know what to do and not sure which clinic to take him to. They both require alot of time, commitment, and money.
3) We need home care for Isaiah to be approved for 16 hours a week. I am going to a job fair on October 19 and hope to enter back into the nursing work force. Pray that I know how to coordinate Isaiah's schedule and what nursing job to accept. I need something that will be flexible and understanding with our situation. We would also love to put Josiah into preschool, but not sure how to do this at this time.
Please keep your eyes open for information regarding an upcoming fundraiser for Isaiah on Saturday, October 16, 2010. It will be held at Calvary of Souderton, room 218 off of Mr. B's, from 9am-1pm. Look forward to seeing you there.
Thank you for all your love and support. Please enjoy the video below. (You will need to go to the blog website to see the video) http://isaiahs-journey.blogspot.com
Friday, August 20, 2010
18 MONTHS TODAY!!!!!! CAN YOU BELIEVE IT?!?!
Isaiah is growing quite quickly into a little man, and has a bigger than life personality! He already knows how to work the crowd, especially the ladies!) He is very funny, likes to make us laugh, likes to torture his older brother. It's never a dull moment around here!
Quick update on his G-tube: We were at CHOP Main 3 times this past week to have his site examined. There is a sore at the surgical site that is starting to tunnel down into where the tube enters the stomach. It is draining, and the doctor had it swabbed for any bacterial infection. It also has granulation tissue growing, which is similar to scar tissue that inhibits healing. Thankfully, the culture came back with a mild bacterial overgrowth that is NOT serious enough for oral antibiotics. We are able to treat the mild infection topically with an antibiotic ointment. Plus, the doctor was able to cauterize the granulation growth. So, now he is hopefully on the mend. We go back to see Dr. Collins on Sept. 1st for another evaluation. She'll determine at that time if she needs to change out the whole tube.
Thank you for continuing to pray, providing meals, sending words of encouragement, and helping out in other ways. We could not have made it through all of this without you!
Quick update on his G-tube: We were at CHOP Main 3 times this past week to have his site examined. There is a sore at the surgical site that is starting to tunnel down into where the tube enters the stomach. It is draining, and the doctor had it swabbed for any bacterial infection. It also has granulation tissue growing, which is similar to scar tissue that inhibits healing. Thankfully, the culture came back with a mild bacterial overgrowth that is NOT serious enough for oral antibiotics. We are able to treat the mild infection topically with an antibiotic ointment. Plus, the doctor was able to cauterize the granulation growth. So, now he is hopefully on the mend. We go back to see Dr. Collins on Sept. 1st for another evaluation. She'll determine at that time if she needs to change out the whole tube.
Thank you for continuing to pray, providing meals, sending words of encouragement, and helping out in other ways. We could not have made it through all of this without you!
Friday, August 13, 2010
QUICK UPDATE...
Isaiah is having trouble with his G-tube site. He now has an ulcerated area around the surgical site. This is causing him additional pain. Every time we hook up his feeds (which is 3 times a day) it rubs against the open area. It's really hard to allow the area rest, and to keep it dry and clean when we have to use it daily. We now have to travel down to CHOP on a weekly basis to see his general surgeon, Dr. Collins. This is adding a lot of additional stress to all of us. Please pray that this sore heals and that it won't become worse.
Isaiah is also still having a lot of trouble eating and drinking. He's at the point he doesn't even want to try. Dr. Collins seems to think that after a couple of weeks, he'll want to try eating again. He continues to throw up every night, and we are dealing with constipation and bloating. Chris and I are tired, and I'm sorry this note doesn't contain good news. This is just our reality right now.
We need an extra dose of grace and energy right now from God. We know what God promises in His Word, but we really need to believe it and rely on it. Pray that not only will Isaiah quickly be healed, but that we will make these following verses our own: "Three times I pleaded with the Lord to take this away from me. But He said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong," 2 Corinthians 12:8-10. Thank you.
Isaiah is also still having a lot of trouble eating and drinking. He's at the point he doesn't even want to try. Dr. Collins seems to think that after a couple of weeks, he'll want to try eating again. He continues to throw up every night, and we are dealing with constipation and bloating. Chris and I are tired, and I'm sorry this note doesn't contain good news. This is just our reality right now.
We need an extra dose of grace and energy right now from God. We know what God promises in His Word, but we really need to believe it and rely on it. Pray that not only will Isaiah quickly be healed, but that we will make these following verses our own: "Three times I pleaded with the Lord to take this away from me. But He said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong," 2 Corinthians 12:8-10. Thank you.
Sunday, August 8, 2010
HOME SWEET HOME!!!!!!
We made it safely home late Sunday afternoon from CHOP. We are doing really well, just tired. We were supposed to come home Saturday, but Isaiah still had not pooped and we were having trouble with his G-Tube site. It was leaking and no one was sure why. Finally, we determined that the one extension set was cracked and the other one was loose. Once we exchanged out the sets, the G-tube stopped leaking. Then after Isaiah pooped, we were given the green light to go home. He is still not eating by mouth and continues to throw up often. It's incredibly frustrating, but there are worse things. We just have to learn to focus on the positive. We are hoping that after this surgery Isaiah will eventually learn to eat and tolerate food. Please continue to pray for this with us.
Isaiah was a favorite amongst the nurses. Many times we would find him at the nurse's station flirting away, giving the 'Surprise Face', helping out with their charts, or he'd be down in the play room entertaining other patients. He is quite a character and has made many of them laugh. Daily, nurses would come into his room for a hug/smile/kiss/or a surprise face---It's something Isaiah likes to do to make people smile or laugh.
Josiah came home at about 6pm on Sunday night. It's always a wonderful feeling when you've been separated from your child, and they come running into you with lots of hugs and kisses! We are so glad to be back together as a family. Thank you for praying for all of us. Thanks to the Ekstrom and Miller families for watching Josiah this past week, and thanks to those who have been providing meals. You've been an incredible help and have alleviated a lot of stress and extra work.
Isaiah was a favorite amongst the nurses. Many times we would find him at the nurse's station flirting away, giving the 'Surprise Face', helping out with their charts, or he'd be down in the play room entertaining other patients. He is quite a character and has made many of them laugh. Daily, nurses would come into his room for a hug/smile/kiss/or a surprise face---It's something Isaiah likes to do to make people smile or laugh.
Josiah came home at about 6pm on Sunday night. It's always a wonderful feeling when you've been separated from your child, and they come running into you with lots of hugs and kisses! We are so glad to be back together as a family. Thank you for praying for all of us. Thanks to the Ekstrom and Miller families for watching Josiah this past week, and thanks to those who have been providing meals. You've been an incredible help and have alleviated a lot of stress and extra work.
Thursday, August 5, 2010
HEALING NICELY...
God has been faithful and little Isaiah is doing well. Dr. Collins was very pleased with how Isaiah did during the G-tube placement. She was able to place the tube without difficulty. Dr. Collins said she was able to examine the duodenal surgical site (from when he was 6 days old), and it looked great. There was only one adhesion that she had to cut through.
Isaiah had a tough time recovering from anesthesia again, but we were prepared for that. The biggest problem Isaiah encountered was pain management. He was in excruciating pain post-op, and it took about 4 hours until his pain was under control. It was heart-wrenching to see him in agonizing pain and not be able to do anything about it.
Today, Isaiah has been out of bed (in a wagon) and has been playing in the game room. He is still having pain, but it is easily controlled. They started giving him some formula through his G-tube (about 2oz.), and he was able to tolerate it without difficulty. Tonight, they will give a larger amount of formula through a continuous feed into the G-tube. He will probably be discharged on Saturday if all goes well.
We finally made it into the Ronald McDonald House. We are very happy to finally be there. The first night we were at a couple's home near CHOP. Last night we stayed in a hotel, and tonight we were planning to sleep at the hospital. But, on our way to the hospital, we got the call for an opening at the Ronald House---Praise the Lord!!!! God provided for us yet again just as the Bible states, "My God shall supply all your (my) needs according to his riches in glory by Christ Jesus," Philippians 4:19. Thank you again for all your prayers! God is listening!!!
Isaiah had a tough time recovering from anesthesia again, but we were prepared for that. The biggest problem Isaiah encountered was pain management. He was in excruciating pain post-op, and it took about 4 hours until his pain was under control. It was heart-wrenching to see him in agonizing pain and not be able to do anything about it.
Today, Isaiah has been out of bed (in a wagon) and has been playing in the game room. He is still having pain, but it is easily controlled. They started giving him some formula through his G-tube (about 2oz.), and he was able to tolerate it without difficulty. Tonight, they will give a larger amount of formula through a continuous feed into the G-tube. He will probably be discharged on Saturday if all goes well.
We finally made it into the Ronald McDonald House. We are very happy to finally be there. The first night we were at a couple's home near CHOP. Last night we stayed in a hotel, and tonight we were planning to sleep at the hospital. But, on our way to the hospital, we got the call for an opening at the Ronald House---Praise the Lord!!!! God provided for us yet again just as the Bible states, "My God shall supply all your (my) needs according to his riches in glory by Christ Jesus," Philippians 4:19. Thank you again for all your prayers! God is listening!!!
Wednesday, August 4, 2010
SURGERY TODAY, AUGUST 4TH
Isaiah is currently in the OR getting his G-tube placed. We had to be at the hospital at 10am, but he wasn't taken in to surgery until 1pm. It is a 1-2 hour procedure. Please pray for Dr. Joy Collins as she works on him, and for no complications during the surgery. Pray that this new tube in his stomach will help him want to eat. Also, we have not been able to get into the Ronald McDonald House yet. We are still trying and hopeful. Right now, we are staying with a very nice couple that live only 5 minutes from CHOP. They don't have air conditioning, so we are a bit toasty up on the 3rd floor. I guess you could say we are a tad spoiled;)We are just glad we are close for now.
Thank you for all your prayers!
Thank you for all your prayers!
Wednesday, July 28, 2010
FANTASTIC NEWS!!!!!!!!!!
Once again, God answered your prayers as we waited for the endocrinologist to get back to us about Isaiah's issues. According to the Diagnostic specialist we saw, the endocrinologist felt very strongly that Isaiah does NOT have anything wrong with his pituitary, adrenal, or thyroid glands. She reviewed his entire chart, labs, radiology reports, etc. from birth til now. Per this doctor, Isaiah is showing NO signs of these particular glands being affected-----PRAISE THE LORD!!!!!!!!!! He will have his thyroid levels repeated just to make sure they are back up to normal (they were a little low in January due to his sickness). We are still waiting to see if anything needs to be done about his spine.
Another exciting moment for us was when Isaiah walked for the first time this past Monday!!!!! He balanced himself off of the therapist and took 4 unassisted steps to me. Then he took another 6 unassisted steps for the video camera for daddy. We were very excited! Then, at the park, Isaiah decided to climb up the stairs of the jungle gym ALL BY HIMSELF!!! I didn't even know he could do that! He is on a rampage now! Hopefully, you can see some of the video clips we tried to attach!
Surgery is back on for Wednesday, August 4th. Isaiah will have the G-tube placed in his stomach for feeds. It'll be much easier to manage, and hopefully we will have less mishaps from the extended tubing we are currently using--we've found Isaiah at the bottom of his crib with the tubing wrapped around his neck a few times. Fun huh?!?!?
TWO PRAYER REQUESTS:
1. That surgery goes well and that it will actually improve Isaiah's reflux and appetite.
2. That we can get in to the Ronald McDonald House. We won't know till the day of if we can get a room at the house. We need a room from Tuesday til Sat. Please pray with us.
Thank you again for carrying us through a very scary time!!!!
Another exciting moment for us was when Isaiah walked for the first time this past Monday!!!!! He balanced himself off of the therapist and took 4 unassisted steps to me. Then he took another 6 unassisted steps for the video camera for daddy. We were very excited! Then, at the park, Isaiah decided to climb up the stairs of the jungle gym ALL BY HIMSELF!!! I didn't even know he could do that! He is on a rampage now! Hopefully, you can see some of the video clips we tried to attach!
Surgery is back on for Wednesday, August 4th. Isaiah will have the G-tube placed in his stomach for feeds. It'll be much easier to manage, and hopefully we will have less mishaps from the extended tubing we are currently using--we've found Isaiah at the bottom of his crib with the tubing wrapped around his neck a few times. Fun huh?!?!?
TWO PRAYER REQUESTS:
1. That surgery goes well and that it will actually improve Isaiah's reflux and appetite.
2. That we can get in to the Ronald McDonald House. We won't know till the day of if we can get a room at the house. We need a room from Tuesday til Sat. Please pray with us.
Thank you again for carrying us through a very scary time!!!!
Tuesday, July 20, 2010
SURGERY AUGUST 4th----UPSETTING NEWS
Well, we were at CHOP again on July 15th and on the 19th to see more specialists. On Thursday, we left the house at 6:20am and didn't return til 7:15pm, a very loooong day. I am going to try to give you the short version of what is going on.
Isaiah saw Radiology, General Surgery, Pulmonology, Anesthesia, and Diagnostics on the 15th, and Cardiology on the 19th.
1. Radiology: a repeat chest X-ray was done, and his lungs were clear. This is a praise since his last x-ray was abnormal.
2. Surgery: Isaiah is tentatively scheduled for surgery August 4th for a G-tube placement into the stomach for feeds, which would replace the NG tube in his nose. Surgery believes he stills needs the Nissen procedure, but we are desperately trying to avoid that because of all the complications that surround it. He will be hospitalized for 2-3 days post-op, and we will be staying at the Ronald McDonald House again (if possible).
3. Pulmonology: Isaiah has been officially diagnosed with a moderate case of asthma. The doctors put him on 3 new medications and is having him rechecked for cystic fybrosis. The original blood tests for CF were inconclusive for them.
4. Anesthesia: Isaiah is cleared for surgery as long as he remains well and stable. He will have to be closely monitored post-op to try to prevent any apneic/bradycardic events.
5. Diagnostics:This was the most intensive appointment of the day. Dr. Mark was incredibly thorough and found some abnormal lab work that had been missed by other doctors. Apparently, Isaiah's thyroid and vitamin D levels are low. Also, he may have pituitary problems and spinal issues. The abnormalities with the thyroid and pituitary have a direct affect on Isaiah's growth and development. If the docs can not regulate/correct the problems with the thyroid and pituitary, the worst case scenario is that Isaiah will stop growing and developing. This was incredibly difficult to hear. I will find out more this week what the plan of treatment will be for Isaiah. I know he will need more lab work and probably 2 separate MRIs, one of the brain and one of the spine. Dr. Mark wanted to confer with several other specialists---Endocrinology, Genetics, Urology, and Surgery---to determine what would be best plan for Isaiah. Pray for wisdom for them.
6. Cardiology:Isaiah has been having subtle changes on heart monitor that he wears during tube feeds and at bedtime. We went from normal readings, to a low resting heart rate of 50-60 bpm, to now having apneic episodes. Cardiology does not feel Isaiah has anything structurally wrong with his heart, but that part of the central autonomic nervous center of the brain may be causing the changes (i.e.the pituitary). His last EKG was normal. Dr. Boris is curious to see what would happen if all the labs stabilized. Abnormal thyroid and pituitary levels can have a direct affect on the heart as well as other important organs/systems of the body. Isaiah is currently on a 24 hour Holter monitor. I am hoping that whatever episodes Isaiah has been having will be captured by the Holter.
7. Primary Pediatrician: Last, but not least, Isaiah's primary doctor has some concern about the adrenal glands. I called the Diagnostic doctor to let him know. I am hoping that all the doctors can coordinate what tests they need as to not have to put Isaiah through too much.
Well, this is the abbreviated version of the craziness that is going on right now. We need alot of prayer, grace, and wisdom to figure out what's happening in little Isaiah's body. Please pray that everything can be stabilized, and that nothing serious will happen to him. Thank you.
Isaiah saw Radiology, General Surgery, Pulmonology, Anesthesia, and Diagnostics on the 15th, and Cardiology on the 19th.
1. Radiology: a repeat chest X-ray was done, and his lungs were clear. This is a praise since his last x-ray was abnormal.
2. Surgery: Isaiah is tentatively scheduled for surgery August 4th for a G-tube placement into the stomach for feeds, which would replace the NG tube in his nose. Surgery believes he stills needs the Nissen procedure, but we are desperately trying to avoid that because of all the complications that surround it. He will be hospitalized for 2-3 days post-op, and we will be staying at the Ronald McDonald House again (if possible).
3. Pulmonology: Isaiah has been officially diagnosed with a moderate case of asthma. The doctors put him on 3 new medications and is having him rechecked for cystic fybrosis. The original blood tests for CF were inconclusive for them.
4. Anesthesia: Isaiah is cleared for surgery as long as he remains well and stable. He will have to be closely monitored post-op to try to prevent any apneic/bradycardic events.
5. Diagnostics:This was the most intensive appointment of the day. Dr. Mark was incredibly thorough and found some abnormal lab work that had been missed by other doctors. Apparently, Isaiah's thyroid and vitamin D levels are low. Also, he may have pituitary problems and spinal issues. The abnormalities with the thyroid and pituitary have a direct affect on Isaiah's growth and development. If the docs can not regulate/correct the problems with the thyroid and pituitary, the worst case scenario is that Isaiah will stop growing and developing. This was incredibly difficult to hear. I will find out more this week what the plan of treatment will be for Isaiah. I know he will need more lab work and probably 2 separate MRIs, one of the brain and one of the spine. Dr. Mark wanted to confer with several other specialists---Endocrinology, Genetics, Urology, and Surgery---to determine what would be best plan for Isaiah. Pray for wisdom for them.
6. Cardiology:Isaiah has been having subtle changes on heart monitor that he wears during tube feeds and at bedtime. We went from normal readings, to a low resting heart rate of 50-60 bpm, to now having apneic episodes. Cardiology does not feel Isaiah has anything structurally wrong with his heart, but that part of the central autonomic nervous center of the brain may be causing the changes (i.e.the pituitary). His last EKG was normal. Dr. Boris is curious to see what would happen if all the labs stabilized. Abnormal thyroid and pituitary levels can have a direct affect on the heart as well as other important organs/systems of the body. Isaiah is currently on a 24 hour Holter monitor. I am hoping that whatever episodes Isaiah has been having will be captured by the Holter.
7. Primary Pediatrician: Last, but not least, Isaiah's primary doctor has some concern about the adrenal glands. I called the Diagnostic doctor to let him know. I am hoping that all the doctors can coordinate what tests they need as to not have to put Isaiah through too much.
Well, this is the abbreviated version of the craziness that is going on right now. We need alot of prayer, grace, and wisdom to figure out what's happening in little Isaiah's body. Please pray that everything can be stabilized, and that nothing serious will happen to him. Thank you.
Thursday, July 1, 2010
STAMPIN' UP FUNDRAISER DURING JULY
Dear Friends and Family,
A dear friend of mine approached us about doing a fundraiser for Isaiah during the month of July. It continues to amaze us how God moves people to meet our needs without us ever saying anything. God is truly generous to us.
Misty Denlinger works for Stampin’ Up as a consultant and will donate her sales commission during the period of July 1, 2010 – July 21, 2010 to our family. Any profits from an order placed during that time under Misty, that mentions in an e-mail or phone call to her that it is for Isaiah, will go to our family. To place an order or browse the products, please follow the following steps:
1. Go to www.stampinup.com
2. At the top right of the screen click on Find a Demonstrator
3. Where it says Demonstrator Directory type in Misty Denlinger State: PA
4. Misty’s information will come up and you can click on her website.
5. You can begin to shop products individually, download a catalog, etc.
6. You can order directly on the website under Misty or you can contact her directly at 215-361-2654 or mddenlinger@verizon.net. If you live locally this may save you a little on shipping.
7. Make sure you not only check out their beautiful stamps and paper but also under Home Décor the Vinyl Art and stencils.
8. Please place your order under Misty Denlinger’s name and then notify her by e-mail or phone that the order you placed is for Isaiah.
It's important to notify Misty of the order you placed so she can credit Isaiah's account. Unfortunately, there is NOT a place online to specify that your order is for Isaiah. If there is any confusion or questions, please contact her. She is more than willing to answer any questions.
Thank you all for your continued love and support, and thank you to Misty for reaching out to our family.
A dear friend of mine approached us about doing a fundraiser for Isaiah during the month of July. It continues to amaze us how God moves people to meet our needs without us ever saying anything. God is truly generous to us.
Misty Denlinger works for Stampin’ Up as a consultant and will donate her sales commission during the period of July 1, 2010 – July 21, 2010 to our family. Any profits from an order placed during that time under Misty, that mentions in an e-mail or phone call to her that it is for Isaiah, will go to our family. To place an order or browse the products, please follow the following steps:
1. Go to www.stampinup.com
2. At the top right of the screen click on Find a Demonstrator
3. Where it says Demonstrator Directory type in Misty Denlinger State: PA
4. Misty’s information will come up and you can click on her website.
5. You can begin to shop products individually, download a catalog, etc.
6. You can order directly on the website under Misty or you can contact her directly at 215-361-2654 or mddenlinger@verizon.net. If you live locally this may save you a little on shipping.
7. Make sure you not only check out their beautiful stamps and paper but also under Home Décor the Vinyl Art and stencils.
8. Please place your order under Misty Denlinger’s name and then notify her by e-mail or phone that the order you placed is for Isaiah.
It's important to notify Misty of the order you placed so she can credit Isaiah's account. Unfortunately, there is NOT a place online to specify that your order is for Isaiah. If there is any confusion or questions, please contact her. She is more than willing to answer any questions.
Thank you all for your continued love and support, and thank you to Misty for reaching out to our family.
Friday, June 25, 2010
HOPE CONCERT---THIS SUNDAY!!!
This Sunday, June 27th, at 10:30am there will be a special music concert at our church, Bethel Baptist Church (754 East Rockhill Rd, Sellersville, PA 18960). The theme is HOPE. The proceeds from the music CD sales go to a young married couple that have been fighting brain cancer. Alyssa was diagnosed with an incurable brain cancer when she was in college. Chris and I will be speaking, as well as some other couples in our church that have gone through significant trials over the past couple of years. Sometimes we all need to be reminded of God's grace and love even during difficult times. God is the only one who can provide HOPE when life seems too difficult to continue on. Isaiah will be there. So, for those of you who did not have a opportunity to meet him at his 1st Birthday party, now is your chance! There will be a catered lunch following the concert. We would love to have you come. If you have any questions, you can contact the church at 215-536-9200.
Now, for a quick update on Isaiah---we have been dealing with diarrhea for 4 months besides all the sicknesses. He was treated for C-diff, but the antibiotics didn't seem to clear up the diarrhea. We are currently having more tests run. His appetite is better and his weight is up to 20 lbs. 8 oz. Thankfully, he has not lost a lot of weight because of the tube feeds. There is a possibility that we might have a G-tube placed in his stomach for feeds, since he will be on them for awhile. Also, there is talk of Isaiah entering into an intensive feeding program that runs 4-6 weeks straight, M-F, 8-5:30p down at CHOP. Pray that Chris and I have the wisdom determining whether we should go ahead with the surgery and if Isaiah really needs the program. It would be nice for him to learn to eat "quantity sufficient" to come off the tube.
Isaiah sees Urology on July 2nd to have an ultrasound to rule out kidney stones. Then on July 15th, we see Pulmonology (to rule out asthma/poor lung function) and Diagnostic (to obtain a better view of all his symptoms). On July 19th, we see cardiology again for the low heart rate and the abnormal reaction to racemic epi. On August 4th, we see Orthopaedics (for his hips and legs) and GI. Please pray that we get to the bottom of Isaiah's issues.
I am looking for someone to go down to CHOP with me on August 4th. However, I really need someone to watch Josiah on July 15th and 19th and on August 4th. If one of you could help out, please let me know. I would greatly appreciate it!
Thank you for your continued prayers and support.
Now, for a quick update on Isaiah---we have been dealing with diarrhea for 4 months besides all the sicknesses. He was treated for C-diff, but the antibiotics didn't seem to clear up the diarrhea. We are currently having more tests run. His appetite is better and his weight is up to 20 lbs. 8 oz. Thankfully, he has not lost a lot of weight because of the tube feeds. There is a possibility that we might have a G-tube placed in his stomach for feeds, since he will be on them for awhile. Also, there is talk of Isaiah entering into an intensive feeding program that runs 4-6 weeks straight, M-F, 8-5:30p down at CHOP. Pray that Chris and I have the wisdom determining whether we should go ahead with the surgery and if Isaiah really needs the program. It would be nice for him to learn to eat "quantity sufficient" to come off the tube.
Isaiah sees Urology on July 2nd to have an ultrasound to rule out kidney stones. Then on July 15th, we see Pulmonology (to rule out asthma/poor lung function) and Diagnostic (to obtain a better view of all his symptoms). On July 19th, we see cardiology again for the low heart rate and the abnormal reaction to racemic epi. On August 4th, we see Orthopaedics (for his hips and legs) and GI. Please pray that we get to the bottom of Isaiah's issues.
I am looking for someone to go down to CHOP with me on August 4th. However, I really need someone to watch Josiah on July 15th and 19th and on August 4th. If one of you could help out, please let me know. I would greatly appreciate it!
Thank you for your continued prayers and support.
Wednesday, May 26, 2010
NEVER A DULL MOMENT...
It's been a tad busy here since Isaiah had his hand surgery in April. Thankfully, his hand is healing nicely. The surgeon told us that he wouldn't have any movement in that thumb until 6-8 weeks after the surgery. Well, at 4 1/2 weeks, Isaiah moved the tip of the thumb, and then at 5 weeks, moved the whole thumb. We are just so excited to see another miracle happen in his little body. Thank you all for praying.
We saw the surgeon, Dr. Chang, May 27th for another follow-up and he gave us a schedule to follow for therapy. We need to see an OT specialist twice a week for quite awhile until Isaiah gains full use of his hand. Dr. Chang was completely excited to see how well Isaiah is doing. I was able to tell him that Isaiah is healing quickly because of everyone's faithful praying.
We've hit a few bumps in the road this past month. On May 12th, Isaiah ended up in the ER for severe abdominal pain. We were afraid that his intestines had twisted. The pain lasted for about 2 hours, and then resolved. Thankfully, the x-rays were negative. We saw the GI specialist the following week, and she felt he may have had intusseseption, when the bowel folds back on itself like a telescope. The only way to verify this is to have an ultrasound done at the time of acute pain. We are hoping it doesn't happen again. The other reason could be kidney/urologically related, so we are to revisit his urology specialist.
Then, on May 22nd, Isaiah went back to the ER at CHOP with difficulty breathing, a severe cough, and a fever of 104.7. He was diagnosed with croup, given steroids and breathing treatments, and sent home even though the x-ray showed possible pneumonia. We thought he was passed the worse since he didn't have a recurring fever since Sunday morning. But, on May 25th he crashed again and we went back to his primary physician. Isaiah was started on steroids, antibiotics, and albuterol breathing treatments to treat both croup and pneumonia. Please pray for a quick and full recovery.
I'll admit, I am a bit tired of running back and forth to the doctors. The doctors still have not found the source of Isaiah's lack of appetite, intermittent vomiting, weight loss, and now diarrhea for the past 3-4 weeks. They also do not know why he is having a harder and harder time recovering from anesthesia. We now have to see 3 new specialists and 1 previous one that had signed off a year ago. They are pulmonology, allergy, diagnostic, and urology. Please pray that somehow the doctors find some resolution to some of Isaiah's issues.
Just a few days ago, we received Isaiah's apnea monitor reading. Up until this point, all of his readings were within normal limits. Unfortunately, this last reading showed his heart rate is resting at 50-60 beats per minute. This is low for a baby. We now have to revisit cardiology to see if there is any underlying problem that was missed before.
Blessings the past few months:
1. Isaiah is moving his new thumb
2. Chris and I celebrated our 6th anniversary
3. My brother, Doug, was able to share Isaiah's story on TV down in South Carolina in conjunction with a Ronald McDonald House Fundraiser. He did a great job (see the following video)
4. Josiah is learning to potty train---pray he learns quickly, for my sanity!)
Prayer Requests:
1. For all the new specialists (cardiology, pulmonology, diagnostic, urology, and allergist) that need to examine Isaiah. Pray that we get some resolution to some of his issues.
2. That Isaiah quailifies for nursing home health care and for some adaptive aides for walking. It would be nice to have some additional help.
3. Pray for Chris' grandfather. He is struggling with Cardiac and eating problems and is not doing well. This has been very difficult on his whole family.
Thank you again for all you do for us!!!!!
We saw the surgeon, Dr. Chang, May 27th for another follow-up and he gave us a schedule to follow for therapy. We need to see an OT specialist twice a week for quite awhile until Isaiah gains full use of his hand. Dr. Chang was completely excited to see how well Isaiah is doing. I was able to tell him that Isaiah is healing quickly because of everyone's faithful praying.
We've hit a few bumps in the road this past month. On May 12th, Isaiah ended up in the ER for severe abdominal pain. We were afraid that his intestines had twisted. The pain lasted for about 2 hours, and then resolved. Thankfully, the x-rays were negative. We saw the GI specialist the following week, and she felt he may have had intusseseption, when the bowel folds back on itself like a telescope. The only way to verify this is to have an ultrasound done at the time of acute pain. We are hoping it doesn't happen again. The other reason could be kidney/urologically related, so we are to revisit his urology specialist.
Then, on May 22nd, Isaiah went back to the ER at CHOP with difficulty breathing, a severe cough, and a fever of 104.7. He was diagnosed with croup, given steroids and breathing treatments, and sent home even though the x-ray showed possible pneumonia. We thought he was passed the worse since he didn't have a recurring fever since Sunday morning. But, on May 25th he crashed again and we went back to his primary physician. Isaiah was started on steroids, antibiotics, and albuterol breathing treatments to treat both croup and pneumonia. Please pray for a quick and full recovery.
I'll admit, I am a bit tired of running back and forth to the doctors. The doctors still have not found the source of Isaiah's lack of appetite, intermittent vomiting, weight loss, and now diarrhea for the past 3-4 weeks. They also do not know why he is having a harder and harder time recovering from anesthesia. We now have to see 3 new specialists and 1 previous one that had signed off a year ago. They are pulmonology, allergy, diagnostic, and urology. Please pray that somehow the doctors find some resolution to some of Isaiah's issues.
Just a few days ago, we received Isaiah's apnea monitor reading. Up until this point, all of his readings were within normal limits. Unfortunately, this last reading showed his heart rate is resting at 50-60 beats per minute. This is low for a baby. We now have to revisit cardiology to see if there is any underlying problem that was missed before.
Blessings the past few months:
1. Isaiah is moving his new thumb
2. Chris and I celebrated our 6th anniversary
3. My brother, Doug, was able to share Isaiah's story on TV down in South Carolina in conjunction with a Ronald McDonald House Fundraiser. He did a great job (see the following video)
4. Josiah is learning to potty train---pray he learns quickly, for my sanity!)
Prayer Requests:
1. For all the new specialists (cardiology, pulmonology, diagnostic, urology, and allergist) that need to examine Isaiah. Pray that we get some resolution to some of his issues.
2. That Isaiah quailifies for nursing home health care and for some adaptive aides for walking. It would be nice to have some additional help.
3. Pray for Chris' grandfather. He is struggling with Cardiac and eating problems and is not doing well. This has been very difficult on his whole family.
Thank you again for all you do for us!!!!!
Saturday, April 24, 2010
HEALING NICELY...
Isaiah recovered quickly from surgery and we were able to come home late, last Saturday night. Isaiah did have a hard time recovering from the anesthesia and was on oxygen for the night. He kept having apneic episodes where he would stop breathing, then drop his oxygen levels and heart rate. We knew this would happen, so we were all prepared for it. Unfortunately, every time Isaiah has had surgery, he has been having a harder and harder time recovering. Hopefully, as he becomes older, he'll have an easier time with anesthesia. One of the anesthesiologists feels he may have a metabolic disorder that doesn't allow him to metabolize medications properly. However, there is no way to test for this, so we just have to be diligent in our observation of Isaiah. Isaiah is pretty much back to his normal, busy little self, with the addition of a big bright orange full arm cast. He continues to use the right arm and fingers (except for the thumb) as if nothing happened. What he doesn't realize is that his cast is like a really hard weapon that hurts us when he hits with it. He thinks it's funny when we try to duck out of the line of fire;) We go back to Dr. Chang on April 30th for cast removal, x-rays, and a splint. We will have a better idea at that time how the new thumb is healing. It will take about 6-8 weeks for the new thumb to have any movement. The upper endoscopy also went well. We received the results of the biopsies a few days ago. Other than a little abnormal inflammation in the stomach and the puckering of the pylorus, everything else appeared normal. The GI specialist feels that the food aversions and throwing up may be all behavioral. I am not fully convinced that that is all it is. Time will tell. Before Isaiah's surgery, we went to have his hearing rechecked. Thankfully, since his ear surgery in December, his hearing has improved significantly. He had 40% hearing loss, but now is back in the normal range. We are just so thankful to God for restoring Isaiah's hearing. Thank you again for all your prayers and support. We truly rely on the strength of God's people to carry us through. Thank you for the letters, emails, gas cards, cleaning our home, and for the dinners. Many of you have helped relieve alot of pressure off of me. We can't thank you enough for your kindness! "Therefore encourage one another and build each other up, just as in fact you are doing,” I Thess. 5:11 Here are some before and after pictures that Dr. Chang sent us of Isaiah's hand surgery. It's quite amazing! Who would have thought you could make a thumb out of a finger?!?!?! "For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee," Isaiah 41:13. | |
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Friday, April 16, 2010
PRAISE THE LORD, SURGERY WENT WELL!!!!!
Isaiah's surgery went very well today. Between the 2 procedures, he was in the OR for about 4 1/2 hours. The endoscopy was primarily normal except for a slightly abnormal looking pyloris. The doctor, Dr. Boyle, said it was "puckered" and took a biopsy of it. We won't know any results for 5-7 days.
Dr. Chang, plastics/ortho, was very pleased with Isaiah's hand. He feels that Isaiah will have great results over time. It takes approximately 6-8 weeks till the new "thumb" is able to work. Isaiah has a full arm cast that is bright orange!) He looks rather cute. I have to admit, though, that I will miss his little 'nub' of a thumb.
We were very blessed to have our pastor, Pastor Campbell, and his wife Rochelle come down and pray over Isaiah and with us. We belong to such a special church that truly love and support us. Thank you to everyone for continuing to pray for us, for providing meals, for taking care of Josiah, for cleaning our home, and so much more. We have so many different people, family, and friends taking care of us that we cannot thank you enough! We don't know what we would do without you!
Dr. Chang, plastics/ortho, was very pleased with Isaiah's hand. He feels that Isaiah will have great results over time. It takes approximately 6-8 weeks till the new "thumb" is able to work. Isaiah has a full arm cast that is bright orange!) He looks rather cute. I have to admit, though, that I will miss his little 'nub' of a thumb.
We were very blessed to have our pastor, Pastor Campbell, and his wife Rochelle come down and pray over Isaiah and with us. We belong to such a special church that truly love and support us. Thank you to everyone for continuing to pray for us, for providing meals, for taking care of Josiah, for cleaning our home, and so much more. We have so many different people, family, and friends taking care of us that we cannot thank you enough! We don't know what we would do without you!
Thursday, April 15, 2010
SURGERY IS SCHEDULED....
Just wanted to let you all know that Isaiah's surgery is scheduled for April 16th at 11:00am. We have to arrive at CHOP at 9:30am for pre-op procedures. Today we found out that Dr. Haber's group, GI specialist, will be adding on an Upper Endoscopy to try to figure out why Isaiah has been having all the eating issues and vomiting. They will do a series of biopsies along the GI tract. We won't know results for 3-4 days after the procedure. Immediately following the endoscopy, Dr. Benjamin Chang will perform surgery on the right hand, making the index finger into a thumb (pollicization). Please pray for all the doctors involved that they will have steady hands and clear minds. Thank you again for all your support and love through all of this. The expected time of stay at CHOP for Isaiah is 2-3 days. Chris and I are staying at the Ronald McDonald House. Pray that all goes well, and that we will have calmness of heart. It's not easy watching my little baby go through multiple surgeries, but I know in the long run it is the best thing for him.
Philippians 4:13, "I can do all things through Christ who strengthens me."
Philippians 4:13, "I can do all things through Christ who strengthens me."
Monday, April 12, 2010
MEDICAL UPDATE...
Hello Everyone,
I wanted to give you an update on all of Isaiah's appointments this past February. It was an absolutely crazy month, but we made it through because of many of your prayers and help. Thank you to those who helped out with meals. You have been a real blessing!
We saw Dr. Haber, GI specialist, for Isaiah's reflux and eating issues. Since he came home with the feeding tube, he has slowly put weight back on. Even though his weight is still below the 5th percentile, Dr. Haber was encouraged by his weight gain, so she does not feel Isaiah needs surgery right now for a more permanent feeding tube or for the Nissen surgery---a HUGE answer to prayer! In fact, one of the doctors stated that after reading his list of problems, she was expecting a baby in much worse condition. Instead, they found a little boy smiling and playing---Again, a huge testament to the power of the Great Physician! Right now we will continue with his nightly feedings until he can eat enough by mouth during the day. It still is a constant fight to get him to eat or drink milk. Continue to pray for patience for us as we feed him, and pray for a bigger appetite for him.
We also met with 2 new orthopaedic specialists, Dr. Carrigan and Dr. Sankar. Dr. Carrigan evaluated Isaiah's left arm. At this point in time, there is nothing to be done with the left arm. He did give me some bad news. He said that there is a possibility that Isaiah's right arm may not grow normally either. Please pray that God will spare the right arm. Dr. Sankar checked on Isaiah's hips and femurs---He feels there is some slight left hip dysplasia and that the femur heads not ossifying is related to his malnutrition. He will recheck Isaiah with X-rays and another full assessment in 6 months.
Dr. Chang is scheduled to perform surgery on Isaiah's right hand this Friday, April 16th. It's called pollicization, where he removes Isaiah's floating thumb and moves the pointer finger into a thumb position. It requires a 3 month recovery period. Isaiah will be casted for 2 weeks and splinted for 4 weeks and will have numerous visits at CHOP Main and Chalfont for rehab. Pray that all goes well. I'll be honest, I am very nervous about this surgery. It's a very complex surgery that can have serious complications, but Isaiah needs it to have a better functioning life when he's older.
We attempted to have Isaiah's hearing reevaluated by Dr. Germiller to see if the tubes helped restore his 40% hearing loss. Unfortunately, he had another ear infection, so we will have to go back to the audiologist in the near future when he's 100% better. So far we haven't noticed a difference in Isaiah's hearing. Right now, he is working with a Speech therapist for his verbal delay (which is related to the hearing loss).
Dr. Kirschen, from neurology, was encouraged with Isaiah's continued growth and meeting of milestones. At age 2, Isaiah will have a repeat MRI of the brain to make sure it is growing and myelinating properly.
We will continue to visit the Feeding Clinic at CHOP until Isaiah is eating well enough on his own. We will also continue to have regular visits with his primary pediatrician. Isaiah's therapies have increased from 3 times a week to 4-5 times a week. He sees physical, occupational, and speech therapy and works with a dietician as needed. It gets a little busy and tiring, but I keep reminding myself, Isaiah is here, he's beautiful, and every day is a gift.
I will be sending another update shortly for March and April as well as an update after Isaiah's surgery on Friday. Thank you for your continued prayers!
I wanted to give you an update on all of Isaiah's appointments this past February. It was an absolutely crazy month, but we made it through because of many of your prayers and help. Thank you to those who helped out with meals. You have been a real blessing!
We saw Dr. Haber, GI specialist, for Isaiah's reflux and eating issues. Since he came home with the feeding tube, he has slowly put weight back on. Even though his weight is still below the 5th percentile, Dr. Haber was encouraged by his weight gain, so she does not feel Isaiah needs surgery right now for a more permanent feeding tube or for the Nissen surgery---a HUGE answer to prayer! In fact, one of the doctors stated that after reading his list of problems, she was expecting a baby in much worse condition. Instead, they found a little boy smiling and playing---Again, a huge testament to the power of the Great Physician! Right now we will continue with his nightly feedings until he can eat enough by mouth during the day. It still is a constant fight to get him to eat or drink milk. Continue to pray for patience for us as we feed him, and pray for a bigger appetite for him.
We also met with 2 new orthopaedic specialists, Dr. Carrigan and Dr. Sankar. Dr. Carrigan evaluated Isaiah's left arm. At this point in time, there is nothing to be done with the left arm. He did give me some bad news. He said that there is a possibility that Isaiah's right arm may not grow normally either. Please pray that God will spare the right arm. Dr. Sankar checked on Isaiah's hips and femurs---He feels there is some slight left hip dysplasia and that the femur heads not ossifying is related to his malnutrition. He will recheck Isaiah with X-rays and another full assessment in 6 months.
Dr. Chang is scheduled to perform surgery on Isaiah's right hand this Friday, April 16th. It's called pollicization, where he removes Isaiah's floating thumb and moves the pointer finger into a thumb position. It requires a 3 month recovery period. Isaiah will be casted for 2 weeks and splinted for 4 weeks and will have numerous visits at CHOP Main and Chalfont for rehab. Pray that all goes well. I'll be honest, I am very nervous about this surgery. It's a very complex surgery that can have serious complications, but Isaiah needs it to have a better functioning life when he's older.
We attempted to have Isaiah's hearing reevaluated by Dr. Germiller to see if the tubes helped restore his 40% hearing loss. Unfortunately, he had another ear infection, so we will have to go back to the audiologist in the near future when he's 100% better. So far we haven't noticed a difference in Isaiah's hearing. Right now, he is working with a Speech therapist for his verbal delay (which is related to the hearing loss).
Dr. Kirschen, from neurology, was encouraged with Isaiah's continued growth and meeting of milestones. At age 2, Isaiah will have a repeat MRI of the brain to make sure it is growing and myelinating properly.
We will continue to visit the Feeding Clinic at CHOP until Isaiah is eating well enough on his own. We will also continue to have regular visits with his primary pediatrician. Isaiah's therapies have increased from 3 times a week to 4-5 times a week. He sees physical, occupational, and speech therapy and works with a dietician as needed. It gets a little busy and tiring, but I keep reminding myself, Isaiah is here, he's beautiful, and every day is a gift.
I will be sending another update shortly for March and April as well as an update after Isaiah's surgery on Friday. Thank you for your continued prayers!
Thursday, March 18, 2010
PAMPERED CHEF FUNDRAISER FOR ISAIAH...
My friend, Jen Black, contacted me to do a fundraiser for Isaiah. He is having right hand surgery Friday, April 16, 2010. It is a complex 3-4 hour surgery that will require 3 months of recovery time, with many trips to CHOP Main and Chalfont for checkups and rehab. If all goes well, Isaiah will only be at CHOP for 2 days. We will be staying at the Ronald McDonald House during that time. Jen works for Pampered Chef, and will be having a show at her house on Friday, March 26th at 7pm. She also has a website that you can purchase products through. If you have any questions, or would like to attend the show, you can contact her through her website or me through our email, isaiahsjourney@yahoo.com to obtain her address and directions. The following instructions Jen gave me for those who cannot come to the party but would still like to order something from Pampered Chef---
Directions for Contributing to the Fundraiser for Isaiah:
1. Go to www.pamperedchef.biz/jenniferblack
2. Click on “Shop Online”
3. Go to option 1 to purchase within a show.
4. Type in "Isaiah Miller"
5. Click on Isaiah Miller
6. Start shopping! I recommend that you immediately go to “Guest Special” and select the item you would like for free. If you don't qualify, it will let you know. It's better to remove instead of forget to do it completely. For the month of March, if you spend $60, you get a choice of a Bamboo Tool Set for FREE.
7. When finished, click on “proceed to checkout.” The website is “VeriSign Secured,” so your information will be protected and no one else (including me, the consultant) will see your information.
8. Thank you for your support of Isaiah!
Below is the details of how this fundraiser helps Isaiah:
• 15 percent contribution goes to cover the extra costs surrounding Isaiah's surgery
• $3 contribution for each booking (if you book a Show, Isaiah gets $3 for each booking)
Jen will be trying to close out the show by March 31st. However, you can still order something in April and the proceeds will still go to Isaiah. Please pass this information onto anyone that may be interested in supporting Isaiah. We would really appreciate it. Thanks for all your love and support!
Below is Jen's Contact information:
Jen Black
Pampered Chef Senior Consultant
410-952-1179
267-373-9510
www.pamperedchef.biz/jenniferblack
Directions for Contributing to the Fundraiser for Isaiah:
1. Go to www.pamperedchef.biz/jenniferblack
2. Click on “Shop Online”
3. Go to option 1 to purchase within a show.
4. Type in "Isaiah Miller"
5. Click on Isaiah Miller
6. Start shopping! I recommend that you immediately go to “Guest Special” and select the item you would like for free. If you don't qualify, it will let you know. It's better to remove instead of forget to do it completely. For the month of March, if you spend $60, you get a choice of a Bamboo Tool Set for FREE.
7. When finished, click on “proceed to checkout.” The website is “VeriSign Secured,” so your information will be protected and no one else (including me, the consultant) will see your information.
8. Thank you for your support of Isaiah!
Below is the details of how this fundraiser helps Isaiah:
• 15 percent contribution goes to cover the extra costs surrounding Isaiah's surgery
• $3 contribution for each booking (if you book a Show, Isaiah gets $3 for each booking)
Jen will be trying to close out the show by March 31st. However, you can still order something in April and the proceeds will still go to Isaiah. Please pass this information onto anyone that may be interested in supporting Isaiah. We would really appreciate it. Thanks for all your love and support!
Below is Jen's Contact information:
Jen Black
Pampered Chef Senior Consultant
410-952-1179
267-373-9510
www.pamperedchef.biz/jenniferblack
Monday, March 8, 2010
ISAIAH'S 1st BIRTHDAY WAS AWESOME!!!!!!!
Dear Friends and Family, We had such an amazing and wonderful party for Isaiah! God answered all our prayers and we had a wonderful celebration of Isaiah's precious life. We can't thank the Moms and Tots group at Bethel Baptist Church enough for organizing and running Isaiah's party, especially Elyse Shedal and Mandy Grogan. It was overwhelmingly exciting to see our little boy make it to his first birthday and to see all the people that were involved in his miraculous life. As we looked around the room, it was amazing to see how many people Isaiah has brought together. Over 200 people attended Isaiah's birthday. We were able to meet several people for the first time, many met Isaiah for the first time, and we were able to catch up with people we hadn't seen in years. Through Isaiah's life, strangers became friends, neighbors became confidants, friends became as family, and our family became a close support system. How amazing is that?!?!?!?! We are tremendously blessed! Thank you to everyone who participated in making Isaiah's birthday so special. Thanks to those who brought food, supplies, assisted all our friends and family, and for all the gifts and support for Isaiah. We love you all very much and appreciate all you do for us. You mean more to us than you will ever know. Our biggest thanks, though, goes to our wonderful Savior, Jesus Christ, who has given us more than we could ever ask for. He is the Great Physician and Provider!!!! Enjoy the pictures!!!!!!!! | |
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Thursday, February 18, 2010
SATURDAY IS THE BIG DAY!!!!! ISAIAH IS ONE!!!!!
We are so excited about Isaiah's first birthday this Saturday! A little over a year ago, we were given little hope, told not to expect much. And now, here we are celebrating a year, rather than only 2 months (our original request from God). We are also very excited for you to meet God's little miracle and for us to meet some of you for the first time! It'll be nice to catch up with those we have not seen in years. It amazes me how God has used this little baby to bring so many people together. We had no idea what God had in store for us when He designated us to be Isaiah's parents. This journey has not always been easy, but it has been blessed!
Just a couple of requests for this Saturday:
1) If you or one of your kids are sick, we ask that you stay home.
2) Please wash your hands upon arrival to the Timothy Center and use Purell (hand sanitizer) throughout the day to try to keep the amount of germ exposure down for Isaiah.
3) When meeting Isaiah, please only touch the top of his head, his feet, or any part of his back side. We ask that no one touch his face or hands, since he puts his hands in his mouth.
4) No kissing!
I hope you understand our precautions and don't take it personally. We are just trying to keep Isaiah healthy and out of the hospital. We appreciate your cooperation!!!!!!!!!
In case you lost or deleted the evite, the party is Sat., Feb. 20th, and is held at Bethel Baptist Church (in the Timothy Center) 754 East Rockhill Rd., Sellersville, PA 18960. There is very limited cell phone reception at the church. If you try to reach us and can't get through, we ask that you try calling the church at 215-536-9200. Family is to meet from 1-3pm and friends from 3-5pm (unless you were told otherwise). Can't wait to see you!!!!!!!
Just a couple of requests for this Saturday:
1) If you or one of your kids are sick, we ask that you stay home.
2) Please wash your hands upon arrival to the Timothy Center and use Purell (hand sanitizer) throughout the day to try to keep the amount of germ exposure down for Isaiah.
3) When meeting Isaiah, please only touch the top of his head, his feet, or any part of his back side. We ask that no one touch his face or hands, since he puts his hands in his mouth.
4) No kissing!
I hope you understand our precautions and don't take it personally. We are just trying to keep Isaiah healthy and out of the hospital. We appreciate your cooperation!!!!!!!!!
In case you lost or deleted the evite, the party is Sat., Feb. 20th, and is held at Bethel Baptist Church (in the Timothy Center) 754 East Rockhill Rd., Sellersville, PA 18960. There is very limited cell phone reception at the church. If you try to reach us and can't get through, we ask that you try calling the church at 215-536-9200. Family is to meet from 1-3pm and friends from 3-5pm (unless you were told otherwise). Can't wait to see you!!!!!!!
Saturday, February 6, 2010
GAINING WEIGHT...
Thankfully, Isaiah has been gaining weight nicely since discharge. When he left CHOP, he weighed 15.86 lbs., but he now weighs 16.13 pounds. We are almost back to his weight before he got sick. He continues with his tube feeds during the night as well as a heart monitor. Isaiah is eating much better during the day, but still has a long way to go before he comes off the feeds. Right now, both boys are currently being treated for Strep throat. They both are congested and feeling under the weather. Please pray that they both recover before their birthday parties.
Pray for all of Isaiah's appointments this month----We have 12 appointments with different specialists: GI, 3 different orthopaedics, ENT, Audiology, Primary Peds, Feeding Clinic, Neurology, Early Intervention, OT splinting, and Homecare. These are appointments besides all of his weekly therapies, which they plan to increase to 4-5 times a week (up from 3). Needless to say, I'm a bit tired with all the travelling and having to stay on top of things. Chris and I could use a break, but Isaiah has to take priority right now for the best possible outcome for him.
Thank you for all your continued prayers and support. I will admit, right now, I'm pretty overwhelmed and feel a bit forgotten by God. In my head, I know that's not true, but my heart is crying out for relief. I'm not always strong or spiritually sound, so right now I could really use your specific prayers to help me through this journey and to learn to focus on God's blessings verses the negative. I need to believe wholeheartedly that God does know what He is doing and learn to depend completely on Him. I need to learn to believe God is love and wants what is best for us.
"He is before all things, and in him all things hold together," Colossians 1:17
"Praise the Lord, O my soul; all my inmost being, praise his holy name. Praise the Lord, O my soul, and forget not all his benefits— who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle’s. As a father has compassion on his children, so the Lord has compassion on those who fear him; for he knows how we are formed, he remembers that we are dust. But from everlasting to everlasting the Lord’s love is with those who fear him, and his righteousness with their children’s children. Praise the Lord, all his works everywhere in his dominion. Praise the Lord, O my soul," Psalm 103
Pray for all of Isaiah's appointments this month----We have 12 appointments with different specialists: GI, 3 different orthopaedics, ENT, Audiology, Primary Peds, Feeding Clinic, Neurology, Early Intervention, OT splinting, and Homecare. These are appointments besides all of his weekly therapies, which they plan to increase to 4-5 times a week (up from 3). Needless to say, I'm a bit tired with all the travelling and having to stay on top of things. Chris and I could use a break, but Isaiah has to take priority right now for the best possible outcome for him.
Thank you for all your continued prayers and support. I will admit, right now, I'm pretty overwhelmed and feel a bit forgotten by God. In my head, I know that's not true, but my heart is crying out for relief. I'm not always strong or spiritually sound, so right now I could really use your specific prayers to help me through this journey and to learn to focus on God's blessings verses the negative. I need to believe wholeheartedly that God does know what He is doing and learn to depend completely on Him. I need to learn to believe God is love and wants what is best for us.
"He is before all things, and in him all things hold together," Colossians 1:17
"Praise the Lord, O my soul; all my inmost being, praise his holy name. Praise the Lord, O my soul, and forget not all his benefits— who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle’s. As a father has compassion on his children, so the Lord has compassion on those who fear him; for he knows how we are formed, he remembers that we are dust. But from everlasting to everlasting the Lord’s love is with those who fear him, and his righteousness with their children’s children. Praise the Lord, all his works everywhere in his dominion. Praise the Lord, O my soul," Psalm 103
Thursday, January 28, 2010
HOME...
We came home late Monday night from CHOP. Isaiah had his first nurse home visit at that time. By the time the nurse was done examining him and setting up his feeding pump, it was late and we were exhausted, but we were home!!!!!!!!!
What Isaiah was diagnosed with this time at CHOP was C-Diff (from being on antibiotics for his ear infections) and Norovirus which is what caused his diarrhea and vomiting. He lost over 2 pounds. He did come home with a feeding tube and a heart monitor. Isaiah gets continuous feeds of fortified formula during the night and is encouraged to eat whatever he wants during the day. Hopefully, as he becomes stronger and eats more, the docs will lessen his feeds and Isaiah could come off the tube permanently. The docs also found that Isaiah's reflux is pretty significant and they would like for him to have surgery in the next couple of months. However, the surgery (called Nissen) is pretty involved and can have A LOT of complications with it. We are not sure this is the route we want to take. But, if Isaiah's intermittent vomiting that he's had over the past 3 months does not resolve, we may not have a choice.
It was a HUGE blessing to come home to a clean and disinfected home. Thank you to the ladies from our amazing church who took the time to make our home safer for Isaiah's return. Thank you also to those who helped us with food, meals, gas cards and other financial needs. We are so blessed to belong to a true Bible-believing church filled with people who demonstrate God's love to us regularly.
We have several requests that need your prayers:
1. For Josiah--the separation this time was very difficult for him and he has been having a hard time assimilating back into family life. It's getting harder and harder leaving Josiah, but often we don't have a choice. Pray that any future separations won't leave a permanent, negative mark on his precious, little heart.
2. For Isaiah to continue eating and gaining weight so he can avoid surgery.
3. For all the appointments in Feb. I need help watching Josiah on Feb. 18th and 24th. If anyone could take care of one or both of those days, I would appreciate it. I am also looking for someone to go down to CHOP with me on Feb. 24th.
4. Chris and I would love a small vacation away somewhere warm, sunny, and with a beach. We could use a break with quiet time to reconnect.
Thank you again for your love and support!
What Isaiah was diagnosed with this time at CHOP was C-Diff (from being on antibiotics for his ear infections) and Norovirus which is what caused his diarrhea and vomiting. He lost over 2 pounds. He did come home with a feeding tube and a heart monitor. Isaiah gets continuous feeds of fortified formula during the night and is encouraged to eat whatever he wants during the day. Hopefully, as he becomes stronger and eats more, the docs will lessen his feeds and Isaiah could come off the tube permanently. The docs also found that Isaiah's reflux is pretty significant and they would like for him to have surgery in the next couple of months. However, the surgery (called Nissen) is pretty involved and can have A LOT of complications with it. We are not sure this is the route we want to take. But, if Isaiah's intermittent vomiting that he's had over the past 3 months does not resolve, we may not have a choice.
It was a HUGE blessing to come home to a clean and disinfected home. Thank you to the ladies from our amazing church who took the time to make our home safer for Isaiah's return. Thank you also to those who helped us with food, meals, gas cards and other financial needs. We are so blessed to belong to a true Bible-believing church filled with people who demonstrate God's love to us regularly.
We have several requests that need your prayers:
1. For Josiah--the separation this time was very difficult for him and he has been having a hard time assimilating back into family life. It's getting harder and harder leaving Josiah, but often we don't have a choice. Pray that any future separations won't leave a permanent, negative mark on his precious, little heart.
2. For Isaiah to continue eating and gaining weight so he can avoid surgery.
3. For all the appointments in Feb. I need help watching Josiah on Feb. 18th and 24th. If anyone could take care of one or both of those days, I would appreciate it. I am also looking for someone to go down to CHOP with me on Feb. 24th.
4. Chris and I would love a small vacation away somewhere warm, sunny, and with a beach. We could use a break with quiet time to reconnect.
Thank you again for your love and support!
Sunday, January 24, 2010
DOING BETTER....
Well, your prayers have been working. Today, for the first time, Isaiah looked and seemed to be feeling much better. He was playing with us and making faces and trying to make us laugh. He kept his food down and only had one bout of diarrhea. He is SLOWLY gaining weight, and may be able to go home in the next couple of days. He will come home with the feeding tube and an apnea monitor. We enjoyed having Josiah down here for the weekend. Isaiah was so happy to see him as were we! Josiah is back now with his cousin Danny. Thank you for constantly thinking and praying for us!
We have met several amazing families and children down here at the Ronald McDonald House. We ask that you also pray for these special children: Noura(from Saudi Arabia)-fighting cancer; Alex(from Poland)-facial/cranial reconstruction; Isabella(from PA)-fighting RSV and is on a vent; Cailee-has 2 more surgeries to endure; and Derek(from PA)-having hemangiomas removed. Pray that we can stay in contact with these wonderful families and that God will show Himself real.
We have met several amazing families and children down here at the Ronald McDonald House. We ask that you also pray for these special children: Noura(from Saudi Arabia)-fighting cancer; Alex(from Poland)-facial/cranial reconstruction; Isabella(from PA)-fighting RSV and is on a vent; Cailee-has 2 more surgeries to endure; and Derek(from PA)-having hemangiomas removed. Pray that we can stay in contact with these wonderful families and that God will show Himself real.
Wednesday, January 20, 2010
SO, HERE'S THE SCOOP...
Isaiah has been down at CHOP now since Sat. night. He has seen alot of doctors and has had quite a few tests done. Here's the run-down. I am going to use some medical terms, so if you have questions, please consult the internet. My brain is just too tired to explain everything---sorry!
Isaiah's fontanelles are still very open, which could be related to a nutrition deficiency, not sure. Neurology will further investigate. Scoliosis of the spine was ruled out, but mild left hip dysplasia was diagnosed. He will need a special brace designed for his hips, but it will be done as an out-patient procedure at a later date. His femoral heads have not ossified, and I'm not sure how this will affect him in the long run, but again the docs think it's related to malnutrition. Isaiah will be seen by multiple orthopaedic surgeons/doctors to deal with the weakness in his spine, both of his upper extemeties, his hips and femurs.
Today, I had to place a Naso-gastric tube down for feedings. Isaiah is still not taking in enough food or fluids to sustain him, and he still has periodic vomiting episodes and diarrhea that the docs can't figure out. There is a possibility for surgery later to help correct the reflux problem, but not until he is stong enough. He is very weak and listless. It's hard to watch. He stays awake for about 45min-1hr. and then is back to sleep for several hours. He has significant muscle wasting and is just so skinny. Sometimes, I feel like I'm going to break him when I pick him up. Please continue to pray for him and for us!
Chris went back to work today, and hopefully Josiah can come down to visit this weekend. We are very thankful for the Ronald McDonald House. We met 2 little girls we would like for you to pray for: Taylor P. and Rowan. Their families would appreciate it. Thank you for your continued love and support!
Isaiah's fontanelles are still very open, which could be related to a nutrition deficiency, not sure. Neurology will further investigate. Scoliosis of the spine was ruled out, but mild left hip dysplasia was diagnosed. He will need a special brace designed for his hips, but it will be done as an out-patient procedure at a later date. His femoral heads have not ossified, and I'm not sure how this will affect him in the long run, but again the docs think it's related to malnutrition. Isaiah will be seen by multiple orthopaedic surgeons/doctors to deal with the weakness in his spine, both of his upper extemeties, his hips and femurs.
Today, I had to place a Naso-gastric tube down for feedings. Isaiah is still not taking in enough food or fluids to sustain him, and he still has periodic vomiting episodes and diarrhea that the docs can't figure out. There is a possibility for surgery later to help correct the reflux problem, but not until he is stong enough. He is very weak and listless. It's hard to watch. He stays awake for about 45min-1hr. and then is back to sleep for several hours. He has significant muscle wasting and is just so skinny. Sometimes, I feel like I'm going to break him when I pick him up. Please continue to pray for him and for us!
Chris went back to work today, and hopefully Josiah can come down to visit this weekend. We are very thankful for the Ronald McDonald House. We met 2 little girls we would like for you to pray for: Taylor P. and Rowan. Their families would appreciate it. Thank you for your continued love and support!
Sunday, January 17, 2010
BAD NEWS...
On Friday, Isaiah took a turn for the worse, starting again with vomiting and diarrhea. By Saturday, he couldn't keep anything down, and his urine output dropped significantly. Sooooooooooooooooo, back to the hospital we went (after just being discharged from GVH on Wed). Only, this time he is at CHOP. Chris took him down late Sat. night and he was finally admitted to a bed at 6am Sunday morning. So far with the tests they have done, the doctors see possible blockages in his stomach/intestines. They Drs. are planning to do a barium swallow study and and upper endoscopy (a camera down his throat to see what's going on). He is on IV fluids and is not able to eat. The Drs. do realize how malnourished he is. Both Chris and I believe that something other than reflux and sickness is going on. Isaiah has been having periodic vomiting for the past 3 months, and they don't know why. Pray that the doctors get to the bottom of Isaiah's issues. Before Isaiah comes home, he will receive a feeding tube. We will be staying at the Ronald McDonald House and Josiah will be with his cousin Danny. Please pray for all of us.
Saturday, January 16, 2010
ISAIAH IS HOME, FINALLY!!!!!
Thank you for all your prayers and support! Isaiah and I finally made it home on Friday at 4pm from my Aunt and Uncle's home. Josiah had been over his illness for about 48 hours. It's good to be home with my husband and both of my boys! Isaiah will continue with his breathing treatments and antibiotics for the next 10 days. His post-hospitalization check-up with Dr. Greenburg on Friday went well, but she also feels Isaiah does need a feeding tube. She is contacting his GI specialist to see if we can get down to CHOP to see Dr. Haber earlier than Feb. 8th, but we will see. We postponed Isaiah's appointments to CHOP that were on Jan. 15th to Jan. 29th to give us a little break. Continue to pray for Isaiah's full recovery.
Quick reminder, Isaiah's 1st Birthday Party is quickly approaching!!!! We really would like for all of you that read the BLOG to come, and please pass the invite onto your friends and families who have also prayed for his little life. We really want you to meet our little 'M&M' (Miracle Man). Please RSVP to isaiahsjourney@yahoo.com ASAP to let us know if you can come so we can have enough snacks available. Thanks and hope to see you all soon!!!!!!
Quick reminder, Isaiah's 1st Birthday Party is quickly approaching!!!! We really would like for all of you that read the BLOG to come, and please pass the invite onto your friends and families who have also prayed for his little life. We really want you to meet our little 'M&M' (Miracle Man). Please RSVP to isaiahsjourney@yahoo.com ASAP to let us know if you can come so we can have enough snacks available. Thanks and hope to see you all soon!!!!!!
Thursday, January 14, 2010
ALMOST HOME...
Isaiah was discharged from Grand View on Wednesday afternoon. He was sent home on breathing treatments every 4 hours and antibiotics for a double ear infection and sore throat. Unfortunately, we were unable to go home since Josiah woke up with vomiting and diarrhea on Wed. Currently, Isaiah and I are staying at my Uncle Bruce's and Aunt Liz's home until Josiah is better. The CHOP doctor encouraged us to keep the boys apart for at least 48 hours until Josiah is passed the worst. Hopefully, we will be home late Friday night or early Saturday.
Thank you for praying for all of us and also for the meals provided. It is a comfort to my heart to know that all I need to do is ask and my men are taken care of. Thank you also to everyone who helped watch Josiah.
Please continue to pray for Isaiah's full recovery. He lost 1 1/2 pounds and is still not eating or drinking what he needs to catch back up. Chris and I are now seriously considering a feeding tube/PEG tube for him. Isaiah is just so skinny right now, with even more muscle and tissue wasting than before. We are concerned that if we don't start fattening him up now and getting him more nutritionally stable, he will become more physically and developmentally delayed. We are afraid that if he were to get sick again, he will even have a harder time to recover because he has no reserves. And, with major surgery coming up in April, he needs to be as healthy as possible. We have several doctors appointments coming up in the next 2 months. Pray we make the right decisions.
I did get some wonderful opportunities in the hospital to share Isaiah's journey and the path God has chosen us to take. Several doctors, nurses, and a couple parents now have Isaiah's blog address. Pray that they read it and see God's amazing power and providence. "Every experience God gives us, every person He puts in our lives, is the perfect preparation for the future that only God can see" (Unknown).
Thank you for praying for all of us and also for the meals provided. It is a comfort to my heart to know that all I need to do is ask and my men are taken care of. Thank you also to everyone who helped watch Josiah.
Please continue to pray for Isaiah's full recovery. He lost 1 1/2 pounds and is still not eating or drinking what he needs to catch back up. Chris and I are now seriously considering a feeding tube/PEG tube for him. Isaiah is just so skinny right now, with even more muscle and tissue wasting than before. We are concerned that if we don't start fattening him up now and getting him more nutritionally stable, he will become more physically and developmentally delayed. We are afraid that if he were to get sick again, he will even have a harder time to recover because he has no reserves. And, with major surgery coming up in April, he needs to be as healthy as possible. We have several doctors appointments coming up in the next 2 months. Pray we make the right decisions.
I did get some wonderful opportunities in the hospital to share Isaiah's journey and the path God has chosen us to take. Several doctors, nurses, and a couple parents now have Isaiah's blog address. Pray that they read it and see God's amazing power and providence. "Every experience God gives us, every person He puts in our lives, is the perfect preparation for the future that only God can see" (Unknown).
Tuesday, January 12, 2010
Tuesday Noon Update
As of this morning Isaiah's IV has been taken out so they can see how he does with eating and drinking. Because of the IV, Isaiah isn't really getting thirsty so they want to see what he takes in today. They also changed his breathing treatments from every 3 hours to every 4 and also changed what drug was getting administered for the breathing treatments. Hopefully this helps with him dropping his heart rate. His fever broke yesterday but he is still receiving pain medication for his ear infections which is new. If he eats and drinks well today, we should be able to take him home tomorrow. At least that's the plan for now.
Thank you all for your prayers, calls, meals, etc.... It's GREATLY appreciated.
Chris & Joy
Thank you all for your prayers, calls, meals, etc.... It's GREATLY appreciated.
Chris & Joy
Sunday, January 10, 2010
Sunday Night Update
Isaiah is still in the hospital. He is starting to eat but very little. It is staying down so that is an improvement. He still has a low grade fever that they are keeping under control with meds. He's also still getting his fluids by IV as he really isn't drinking much either. Joy had a rough night last night and I relieved her around noon so she could go home and take a nap. When Joy got back to the hospital, I had to head back home to relieve my parents who have been watching Josiah all afternoon. Joy told me tonight that Isaiah is have episodes where he is dropping his heart rate. Nobody is sure what this means right now. Continue to pray that this a small part of the RSV and the doctors and us are not missing something else hiding. Pray his fever breaks and he starts eating more. Then he will be able to come home.
Every obstacle the Lord puts before us, He's trying to show us something. We have seen so many blessings and met so many people we wouldn't have met through Isaiah's birth. This is just another opportunity to see God work. I pray we will see what the Lord has to show us. We just heard tonight of a mother who is expecting and the baby has complications. The mother was thinking of having an abortion but one of our friends shared Isaiah's story and that mother has since changed her mind. As if Isaiah's life isn't enough, it's great to see other's lives affected positively as well. God is GREAT!!!
Again, we'll keep everyone posted of Isaiah's progress as soon as we can. Have a great night.
Chris and Joy
Every obstacle the Lord puts before us, He's trying to show us something. We have seen so many blessings and met so many people we wouldn't have met through Isaiah's birth. This is just another opportunity to see God work. I pray we will see what the Lord has to show us. We just heard tonight of a mother who is expecting and the baby has complications. The mother was thinking of having an abortion but one of our friends shared Isaiah's story and that mother has since changed her mind. As if Isaiah's life isn't enough, it's great to see other's lives affected positively as well. God is GREAT!!!
Again, we'll keep everyone posted of Isaiah's progress as soon as we can. Have a great night.
Chris and Joy
Saturday, January 9, 2010
Update.......
Isaiah has been admitted to the hospital. He will spend the night and we will see how he is tomorrow. He tested positive for RSV. He is still having trouble taking any food and liquids. They were able to get the IV started, so we are taking care of the dehydration. We will see how everything is in the morning. Joy will be staying at the hospital for the night. I went to drop things off and see Isaiah while my parents stayed at our house and watched Josiah. Hopefully Isaiah gets the rest he needs and his fever breaks tomorrow. We also neeed him to be able to start keeping down foods. Thank you everyone for your prayers. We'll keep you updated as soon as we can.
Thanks
Chris & Joy
Thanks
Chris & Joy
IN NEED OF SOME PRAYER....
Isaiah is sick again. He's had a fever now for 3 days and been throwing up pretty much everything we try to give him. There is now a ton of congestion in his chest now and the throwing up we feel is due to all the drainage from his teething. All this, for 3 days now, has made us extremely concerned about dehydration and loss of weight.
Joy just left with him to go to the ER. Please pray that they can figure out what is wrong so we can put this behind us quickly. Also pray that he doesn't lose a lot of weight as he has another eating evaluation in a couple of weeks.
Thank you all for your continued support and prayers during these times.
Chris & Joy
Joy just left with him to go to the ER. Please pray that they can figure out what is wrong so we can put this behind us quickly. Also pray that he doesn't lose a lot of weight as he has another eating evaluation in a couple of weeks.
Thank you all for your continued support and prayers during these times.
Chris & Joy
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