Just a warning, this will be a long update with alot of information. Isaiah had many appointments in October. We were at the doctors (CHOP) every week for various checkups. I will start with the praises, and end with our prayer requests.
PRAISES:
1. Thank you to those who prayed for Isaiah when he was really sick. It lasted for about 6 days (from 10/14-10/20). On the 20th, he finally woke up without a fever, but slept all day. He was a tired little dude!
2. Praise the Lord---the hole (PFO) in Isaiah's heart has officially closed! It was confirmed on Oct. 14th by Dr. Boris. Cardiology has signed off Isaiah's case. It is wonderful not to have to worry about the health of his little heart anymore.
3. Isaiah passed his eyesight test---he has a slight abnormality in the optic disks, but nothing that should affect his eyesight. We go back to see the ophthalmologist when he is 3-4 years old.
4. Another one of Isaiah's genetic tests, Zic 3, came back negative. We are still waiting on the results for Cystic Fibrosis and Fanconi's syndrome.
5. Angelina Coleman, one of the babies we have been praying for, is going back to Florida in about two weeks (after being up here for over 1 year). Her family leaves to go back on Nov. 12th. Pray as Angelina is medivaced to a local hospital in FL, and for her family as they learn to maintain her ventilator and trach. The family's hope is for her to eventually go home someday soon. Angelina still has to become stronger after her double lung transplant.
PRAYER REQUESTS:
1. Isaiah failed his hearing test. He is not hearing in the lower decibels. We go to see and ENT specialist, Dr. Germiller, on Nov. 16th at CHOP Main. Josiah will also be seeing the specialist for multiple ear infections to determine whether or not he needs tubes.
2. Isaiah also failed to put on enough weight for the CHOP swallowing/feeding team. There is a very large discrepancy between his length and weight. He is below the 5th percentile. They feel he has mild wasting (loss of muscle tissue), and if he doesn't eat approximately 30 ounces a day, he may end up with a feeding tube. They feel he is not taking in enough nutrients to sustain new muscle and tissue growth. Isaiah is improving with eating baby food, about a jar a day, but that is still not enough to gain weight. Please pray that he miraculously gains weight by the next visit(December10th). Another issue could be his reflux is worsening and that is why he is not eating well. The team will be addressing that as well on Dec. 10th. Also, pray for me as it's hard to constantly fight over every meal and bottle. It would be nice for Isaiah just to eat nicely without a struggle.
3. Please pray for a family who just had their first baby last Friday, and the baby was diagnosed with Pulmonary Hypertension after he was born up at Lehigh Valley Hospital. The baby was treated with a catheterization and placed on a ventilator. This was supposed to be the treatment that would help him recover and become stronger within a few days. The baby a couple day ago took a drastic negative turn and they flew him down to CHOP b/c Lehigh couldn't stabilize him. As they were getting ready to load him onto the chopper he coded (Cardiac Arrest). They were able to revive him, but it is touch and go. The baby's name is Christopher Michael, and the parents are Michael and Taneka Oldham.
PLEASE lift this baby and family up in prayer and for healing and super grace for them at this time! They had no idea at birth that any of this would lay before them. Taneka hasn't even held him yet!!!! I will update you as I know more.
UPCOMING EVENTS:
1. Isaiah's next surgery is scheduled for April. It will be pretty extensive as they create a thumb out of the index finger on his right hand. He will be casted and splinted for 6 weeks, and then have extensive therapy. It'll be a long recovery.
2. SAVE THE DATE!!!!!!!!! February 20, 2010 (Saturday)--It will be Isaiah's 1st birthday! Everyone, and we mean EVERYONE, is invited to share in this joyous occasion! Isaiah is here because of everyone's prayers. We want everyone to come and meet Isaiah and we would like to meet those we haven't met yet. We will share more info as the date becomes closer---We do know the birthday party will be held at Bethel Baptist Church, in the Timothy Center. Please Come!!!!
3. REMEMBER THE FUNDRAISER FOR ISAIAH!!!!!!!!! If you meant to participate and haven't yet, here is a friendly reminder. It ends November 30th. Please check out Mike Landis' website for the information, http://mikelandisblog.com/?p=2937, or contact him directly by phone 267-328-7457 or through his email address mike@mikelandisphotographer.com. Thank you.
4. Chris and I are looking for several individuals to help us out through the fall/winter months. We would like to have help with the boys on Sunday mornings and Wednesday nights so Chris and I can go to church occasionally together. Both Josiah and Isaiah keep getting really sick every time we go out in public. We are desperately trying to keep them healthy. A couple of our wonderful neighbors have been helping us right now, but we don't want to tire them out!)
Thank you all for continuing to uplift us in prayer, for the encouraging letter and emails, and for the financial help. We seriously could not get through all of this with Isaiah without your support and love. It is so true what the Bible says about family/friends, "Two are better than one; because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." Ecclesiates 4:9,10,12 Thank you for being our 'friends'! We love you!
Wednesday, November 4, 2009
Saturday, October 17, 2009
CALLING ALL PRAYER WARRIORS...
Dear Friends,
We are dire need of God's intervention in the health of Isaiah right now. We spent the majority of the day yesterday (Friday) at Grand View's Emergency Room. He has had high fevers for a few days, the highest being 105.1. He has also had difficulty breathing and swallowing, and has white patches in his throat. His appetite and his urinary output are decreased. Isaiah was given IV fluids and antibiotics to cover anything that might be bacterial. We are still waiting on his blood culture and throat culture results. The pediatric ER doctor feels that he has just a really bad virus, and it is NOT influenza A (swine flu) or influenza B. Please pray for all of us that we will get over these infections, especially for Isaiah since he is only 7 months old. We have all had something---I had bronchitis, Josiah had bilateral ear and eye infections, Chris had an upper respiratory cold, and Isaiah also had eye infections. We are quite frustrated with everything that is going on. We will have to now limit contact with the outside world. We can't afford any more sickness. Please pray for our sanity and health. We would greatly appreciate it!
"My Grace is sufficient for thee; for My strength is made perfect in weakness..."
II Corinthians 12:9
We are dire need of God's intervention in the health of Isaiah right now. We spent the majority of the day yesterday (Friday) at Grand View's Emergency Room. He has had high fevers for a few days, the highest being 105.1. He has also had difficulty breathing and swallowing, and has white patches in his throat. His appetite and his urinary output are decreased. Isaiah was given IV fluids and antibiotics to cover anything that might be bacterial. We are still waiting on his blood culture and throat culture results. The pediatric ER doctor feels that he has just a really bad virus, and it is NOT influenza A (swine flu) or influenza B. Please pray for all of us that we will get over these infections, especially for Isaiah since he is only 7 months old. We have all had something---I had bronchitis, Josiah had bilateral ear and eye infections, Chris had an upper respiratory cold, and Isaiah also had eye infections. We are quite frustrated with everything that is going on. We will have to now limit contact with the outside world. We can't afford any more sickness. Please pray for our sanity and health. We would greatly appreciate it!
"My Grace is sufficient for thee; for My strength is made perfect in weakness..."
II Corinthians 12:9
Saturday, October 3, 2009
And finally, some more pictures.
Sorry everyone it's been so long. I just realized that the last time we posted pictures was back in April. So here are some more... (Left to right, top to bottom) 1. With Dad, right before the last surgery 2. With Mom, right before the last surgery 3. Our boys dressed up for church 4. Our boys wearing their Ronald McDonald shirts 5. Trying food, but I don't like it. 6. Bath time. What...they're clean. | ||
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FEEDING CLINIC UPDATE...
Hello All,
Just wanted to let you all know how Isaiah's last visit went at the Feeding Clinic at CHOP Main. Isaiah was seen by 5 specialists: a Nutritionist, Speech, OT, Nurse Practioner, and Dr. Cohen (a feeding doctor). This was the quickest appointment we have had yet, only 2 1/2 hours long. Chris's Aunt Anita went down with us, cause I though it would be a long day. Thankfully, it wasn't a long day, and I appreciated the company.
Right now, the specialists do NOT feel that Isaiah has any structural abnormalities, but rather just has a strong aversion to food. We have to spoon feed formula to Isaiah twice a day to try to get him used to taking in 'food' by mouth via a spoon. Also, his home OT (occupational therapist) works with him once a week as well. We will head back down to CHOP Main for a reevaluation on Oct. 21st. Hopefully, he will be improved and we can move onto actual food.
Isaiah has several appointments this month with CHOP doctors. Due to the 3 abnormalities in his brain, Isaiah will have his hearing and vision reevaluated on Oct. 7th. He needs to be rechecked to make sure everything is still functioning normally. On Oct. 14th, Isaiah will be seeing Dr. Boris, Cardiologist, to have the hole in his heart reevaluated. On the 21st, we head back to CHOP Main for feeding clinic. I am looking for someone to watch Josiah on the 14th. He would need to be picked up at my house around 9:30am, and then one of us will get him when we get home. Also, if someone would like to drive down with me on the 21st, I would appreciate it. I just want you to know that I will be visiting one or two of the other little babies we have been praying for on Oct. 21st.
We do have some sad news to share with everyone. One of the babies in Isaiah's pod down at CHOP's NICU, passed away on Sept. 21st. His name was Blake Carvalho. He was just a few days shy of his 7 month birthday. He fought long and hard, along with his parents, against his disease of autosomal recessive policystic kidney disease. Please be praying for his parents, Barbara Pereira and Bryan Carvalho. My heart just breaks for them. I know many of you prayed for Blake and his family. Thank you for that.
Thank you again for all your prayer and support. Remember to visit Mike Landis' blog site for his fund-raiser for Isaiah--http://mikelandisblog.com/?p=2937 . Mike's contact phone number is 267-328-7457 and his email address is mike@mikelandisphotographer.com.
We love you all!
Just wanted to let you all know how Isaiah's last visit went at the Feeding Clinic at CHOP Main. Isaiah was seen by 5 specialists: a Nutritionist, Speech, OT, Nurse Practioner, and Dr. Cohen (a feeding doctor). This was the quickest appointment we have had yet, only 2 1/2 hours long. Chris's Aunt Anita went down with us, cause I though it would be a long day. Thankfully, it wasn't a long day, and I appreciated the company.
Right now, the specialists do NOT feel that Isaiah has any structural abnormalities, but rather just has a strong aversion to food. We have to spoon feed formula to Isaiah twice a day to try to get him used to taking in 'food' by mouth via a spoon. Also, his home OT (occupational therapist) works with him once a week as well. We will head back down to CHOP Main for a reevaluation on Oct. 21st. Hopefully, he will be improved and we can move onto actual food.
Isaiah has several appointments this month with CHOP doctors. Due to the 3 abnormalities in his brain, Isaiah will have his hearing and vision reevaluated on Oct. 7th. He needs to be rechecked to make sure everything is still functioning normally. On Oct. 14th, Isaiah will be seeing Dr. Boris, Cardiologist, to have the hole in his heart reevaluated. On the 21st, we head back to CHOP Main for feeding clinic. I am looking for someone to watch Josiah on the 14th. He would need to be picked up at my house around 9:30am, and then one of us will get him when we get home. Also, if someone would like to drive down with me on the 21st, I would appreciate it. I just want you to know that I will be visiting one or two of the other little babies we have been praying for on Oct. 21st.
We do have some sad news to share with everyone. One of the babies in Isaiah's pod down at CHOP's NICU, passed away on Sept. 21st. His name was Blake Carvalho. He was just a few days shy of his 7 month birthday. He fought long and hard, along with his parents, against his disease of autosomal recessive policystic kidney disease. Please be praying for his parents, Barbara Pereira and Bryan Carvalho. My heart just breaks for them. I know many of you prayed for Blake and his family. Thank you for that.
Thank you again for all your prayer and support. Remember to visit Mike Landis' blog site for his fund-raiser for Isaiah--http://mikelandisblog.com/?p=2937 . Mike's contact phone number is 267-328-7457 and his email address is mike@mikelandisphotographer.com.
We love you all!
Friday, September 18, 2009
FUNDRAISER FOR ISAIAH...
Hello Dear Friends and Family,
We wanted to let you know that one of our friends, that we met on this amazing journey with Isaiah, contacted us to do a fundraiser for Isaiah through his photography business to help with our many expenses. If you remember, Mike Landis, took the first pictures of Isaiah right after he was born. Mike was with us during a very uncertain time and sacrificed his time and resources to take beautiful photos. We are incredibly thankful for Mike and his wife, Trish, who continue to support us.
To find out about Mike's fundraiser for Isaiah, please go to his blog site for further information. http://mikelandisblog.com/?p=2937 Thank you, Mike and Trish, for your love and support.
Also, please pray for us as we head back down to CHOP again on Sept. 21st. Isaiah has been having trouble swallowing food. He either chokes, gags, throws up, or just holds the food in his mouth refusing to swallow it. His Occupational Therapist has been working with him, but he has not progressed. It's frustrating, because it's just one more thing to follow-up on. Isaiah will meet with 4 different specialists. I am looking for someone to go down to CHOP with me. I know it is short notice. We would have to leave my house at 7:00 in the morning on Monday, and I don't know what time we would return. Please let me know if anyone is available. I would appreciate it.
Isaiah has recovered nicely from his surgery. We had a little set back in the beginning, due to an onset of diarrhea, but thankfully all of his tests came back negative. The doctors think Isaiah was probably sick due to the medication and the anesthesia. He is back to his usual self. Thank you to all who prayed. We will update you after he meets with the specialists. Isaiah has not been tested yet for Cystic Fybrosis. We have other things to take care of first...
We wanted to let you know that one of our friends, that we met on this amazing journey with Isaiah, contacted us to do a fundraiser for Isaiah through his photography business to help with our many expenses. If you remember, Mike Landis, took the first pictures of Isaiah right after he was born. Mike was with us during a very uncertain time and sacrificed his time and resources to take beautiful photos. We are incredibly thankful for Mike and his wife, Trish, who continue to support us.
To find out about Mike's fundraiser for Isaiah, please go to his blog site for further information. http://mikelandisblog.com/?p=2937 Thank you, Mike and Trish, for your love and support.
Also, please pray for us as we head back down to CHOP again on Sept. 21st. Isaiah has been having trouble swallowing food. He either chokes, gags, throws up, or just holds the food in his mouth refusing to swallow it. His Occupational Therapist has been working with him, but he has not progressed. It's frustrating, because it's just one more thing to follow-up on. Isaiah will meet with 4 different specialists. I am looking for someone to go down to CHOP with me. I know it is short notice. We would have to leave my house at 7:00 in the morning on Monday, and I don't know what time we would return. Please let me know if anyone is available. I would appreciate it.
Isaiah has recovered nicely from his surgery. We had a little set back in the beginning, due to an onset of diarrhea, but thankfully all of his tests came back negative. The doctors think Isaiah was probably sick due to the medication and the anesthesia. He is back to his usual self. Thank you to all who prayed. We will update you after he meets with the specialists. Isaiah has not been tested yet for Cystic Fybrosis. We have other things to take care of first...
Saturday, August 29, 2009
ISAIAH'S SURGERY...
Dear Family and Friends,
Thank you all for praying for Isaiah and for us this past Friday. We all had an incredibly long day. We arrived at CHOP at 7 :15 in the morning for a 7:30 am check-in time. However, he was not taken back for surgery until 10:50am. The poor boy didn't have anything to eat since 11:00pm the night before, but he did great considering. Besides correcting his urological problems, the doctors found he had hernias in both groins. Thankfully, everything was fixed and put back together. We ran into one snag, though. When Dr. Zderic was operating, he found some structional abnormalities inside of Isaiah which made him think of Cystic Fybrosis (a lung disease-how it relates we don't know). We have to follow up with the geneticist again to have further testing done. Please pray that these tests for Cystic Fybrosis come back negative. Isaiah did stay overnight for observation, but we were released at 11:00am this morning. We are going to be heading home soon from the Ronald McDonald House.
We are so grateful to all for praying for us and sending us encouraging notes. God has been good. We want to say a BIG thank you to the Bergeys for watching Josiah. We know he had a great weekend with you and Daisy the dog!) Thanks also to Pastor and Rochelle (and Aaron) for coming down and praying with us. You really helped to calm our hearts. Thank you to those who helped out with meals to take some pressure off of me----that was a HUGE relief. Thanks to my father-in-law, Glenn, for watching Isaiah so I could pack and clean before our trip down to Phila. Thanks also to my Aunt Liz who spent many hours with Isaiah and me down at CHOP preparing for his surgery. And, last but not least, thanks to our neighbor Deb for watching the boys on very short notice for my doctor's visit and for Josiah's visit to the ER (he needed stitches in his forehead for a fall a couple weeks ago).
We are continually reminded of God's goodness and faithfulness. We encourage all of you to read Isaiah 43:1-4, and 7. God does not leave us in times of struggles because as He states, "You are mine..." As we continue on this journey, we hope we will always remember this promise, even when days seem dark. Isaiah is amazing, a modern day miracle!
We love you all very much.
Thank you all for praying for Isaiah and for us this past Friday. We all had an incredibly long day. We arrived at CHOP at 7 :15 in the morning for a 7:30 am check-in time. However, he was not taken back for surgery until 10:50am. The poor boy didn't have anything to eat since 11:00pm the night before, but he did great considering. Besides correcting his urological problems, the doctors found he had hernias in both groins. Thankfully, everything was fixed and put back together. We ran into one snag, though. When Dr. Zderic was operating, he found some structional abnormalities inside of Isaiah which made him think of Cystic Fybrosis (a lung disease-how it relates we don't know). We have to follow up with the geneticist again to have further testing done. Please pray that these tests for Cystic Fybrosis come back negative. Isaiah did stay overnight for observation, but we were released at 11:00am this morning. We are going to be heading home soon from the Ronald McDonald House.
We are so grateful to all for praying for us and sending us encouraging notes. God has been good. We want to say a BIG thank you to the Bergeys for watching Josiah. We know he had a great weekend with you and Daisy the dog!) Thanks also to Pastor and Rochelle (and Aaron) for coming down and praying with us. You really helped to calm our hearts. Thank you to those who helped out with meals to take some pressure off of me----that was a HUGE relief. Thanks to my father-in-law, Glenn, for watching Isaiah so I could pack and clean before our trip down to Phila. Thanks also to my Aunt Liz who spent many hours with Isaiah and me down at CHOP preparing for his surgery. And, last but not least, thanks to our neighbor Deb for watching the boys on very short notice for my doctor's visit and for Josiah's visit to the ER (he needed stitches in his forehead for a fall a couple weeks ago).
We are continually reminded of God's goodness and faithfulness. We encourage all of you to read Isaiah 43:1-4, and 7. God does not leave us in times of struggles because as He states, "You are mine..." As we continue on this journey, we hope we will always remember this promise, even when days seem dark. Isaiah is amazing, a modern day miracle!
We love you all very much.
Wednesday, August 19, 2009
Magazine Support - Angelina
Hi everyone,
We wanted to try to help out another couple that we met at the Ronald McDonald House in Philadelphia. They have been at CHOP since October 08. Their daughter had a double lung transplant. Even though she had her transplant and is doing well, her and her family are not out of the woods yet.
They are trying to raise support through magazine sales. If you are looking into getting a magazine or wanted to renew a subscription you already have, please consider ordering through the following website. Joy and I were able to renew one of our magazine subscriptions and we saved about 80% on the cover price.
http://t.konversation.com/app/t/g0g/p/q/r61wsh/q/s2g7n/t.htm
Please consider helping out this family. This family has been on Family Medical Leave all this time.
Quick Update On Isaiah:
Joy was down at CHOP all day on Friday Aug 14th with 3 appointments lined up. The first appointment was at 9am with Genetics. They looked him over and were amazed at how well he looked. They still were not able to determine the true cause of what Isaiah has. All tests thus far have come back negative. They did take some more blood to run a couple more tests. Joy and I know what really happened. We feel he had trisomy 18 and through ALL OUR prayers, God healed him. It's the only explanation. Let's continue to give our Lord and Savior the Glory He deserves. Please remember to Thank God.
After that, they met with Anesthesia to discuss his surgery coming up. Even though the procedure is supposed to be an outpatient procedure, we had concerns with how Isaiah would do, after the procedure, after being on anesthesia. When Isaiah had his first surgery (at 6 days old), Isaiah kept dropping is heart rate and oxygen level. They said that they would monitor this and if Joy and I felt Isaiah needed more monitoring, they would not force us out the door. This was nice to hear.
Their last meeting was with the Neurologist to go over the possible buildup of the fluid on the brain. After examining him, they felt that the fullness of his fontanels at times was a normal variance for Isaiah. The size of his head has not grown outside normal limits. This is just something we will just have to keep monitoring. Is was great news that there wasn't an excess of fluid, so much so, that it was actually putting pressure on the brain and enlarging his head.
The other praise with all this is we were able to get back in the Ronald McDonald House so we can be down there the night before and night after Isaiah's surgery. We don't have a time for the procedure yet but were told it could be as early as 6am (another reason we are glad to be at the Ronald McDonald House)
I will try to get more pictures up before the next surgery. Thank you everyone for your continued prayers.
Chris, Joy, Josiah and Isaiah
We wanted to try to help out another couple that we met at the Ronald McDonald House in Philadelphia. They have been at CHOP since October 08. Their daughter had a double lung transplant. Even though she had her transplant and is doing well, her and her family are not out of the woods yet.
They are trying to raise support through magazine sales. If you are looking into getting a magazine or wanted to renew a subscription you already have, please consider ordering through the following website. Joy and I were able to renew one of our magazine subscriptions and we saved about 80% on the cover price.
http://t.konversation.com/app/t/g0g/p/q/r61wsh/q/s2g7n/t.htm
Please consider helping out this family. This family has been on Family Medical Leave all this time.
Quick Update On Isaiah:
Joy was down at CHOP all day on Friday Aug 14th with 3 appointments lined up. The first appointment was at 9am with Genetics. They looked him over and were amazed at how well he looked. They still were not able to determine the true cause of what Isaiah has. All tests thus far have come back negative. They did take some more blood to run a couple more tests. Joy and I know what really happened. We feel he had trisomy 18 and through ALL OUR prayers, God healed him. It's the only explanation. Let's continue to give our Lord and Savior the Glory He deserves. Please remember to Thank God.
After that, they met with Anesthesia to discuss his surgery coming up. Even though the procedure is supposed to be an outpatient procedure, we had concerns with how Isaiah would do, after the procedure, after being on anesthesia. When Isaiah had his first surgery (at 6 days old), Isaiah kept dropping is heart rate and oxygen level. They said that they would monitor this and if Joy and I felt Isaiah needed more monitoring, they would not force us out the door. This was nice to hear.
Their last meeting was with the Neurologist to go over the possible buildup of the fluid on the brain. After examining him, they felt that the fullness of his fontanels at times was a normal variance for Isaiah. The size of his head has not grown outside normal limits. This is just something we will just have to keep monitoring. Is was great news that there wasn't an excess of fluid, so much so, that it was actually putting pressure on the brain and enlarging his head.
The other praise with all this is we were able to get back in the Ronald McDonald House so we can be down there the night before and night after Isaiah's surgery. We don't have a time for the procedure yet but were told it could be as early as 6am (another reason we are glad to be at the Ronald McDonald House)
I will try to get more pictures up before the next surgery. Thank you everyone for your continued prayers.
Chris, Joy, Josiah and Isaiah
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