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!!!
Thursday, August 5, 2010
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!!!!!
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