Once again, our lives were spared by God's protective shield. On Wednesday, October 17th, on our way down to CHOP, my car (Honda Pilot) was hit again, only this time more seriously. I was taking Isaiah down for his first post-hospitalization visit with surgery and pulmonology. Isaiah's nurse was also with us. We were just coming out of a gas station when a car came driving up the middle of the road (not in a lane) and hit us almost head-on. All air bags deployed. Thankfully, I received the brunt of the force and not Isaiah, who was sitting behind me, or his nurse. All 3 of us were taken to the hospital. Isaiah hit his chin and left leg, but otherwise was ok. He was really shook up and kept his paci and bear with him all day. The nurse hit her knees and her neck is hurt, but she is currently recovering slowly. My right arm had some radial nerve damage/injury and I lost all feeling, strength, and movement. I thought it was broken at first. Thankfully, it's not broken, just sore with some severe air bag burns and resolving weakness. My neck needs further evaluation by MRI for possible herniation of discs.
So, thank you for continuing to pray for all of us. God continues to protect us. Pray for continued healing for all our bodies and that the injuries to my neck are not too severe. Please pray for safety as I need to drive down to CHOP next Wednesday for Isaiah's surgical check-up. Does anyone have an armored tank I could borrow?
With everything that has happened to us over the past year, it has reminded us once again that life is short and we can't take it for granted. Please take the time to hug your family/friends and make sure that they know how much you love them and value them. Know that we love you all very much--don't ever forget that!
Friday, October 19, 2012
Sunday, October 14, 2012
THANK YOU! THANK YOU! THANK YOU!!!!!!!!!
We cannot thank you enough for all the prayers on our behalf for the grant for the flooring. WE GOT IT!!!!
We could not believe it when we received the call from our social worker at CHOP that Freddy's Footsteps approved the grant to replace the flooring in our home. We are just so grateful for the work our social worker, Megan, did on our behalf, and for the generosity of the grant program. We were so overwhelmed with trying to figure out a way to do the floors ourselves after all the damage from Isaiah's vomiting for the past 2 years. Now, we don't have to! PRAISE THE LORD!!! THANK YOU, THANK YOU, THANK YOU!!! Construction/Destruction (or "struction" as Josiah says) has begun in our home. Please pray for grace, safety, and patience as we work on replacing the floors over the next month.
Another BIG praise---the bill that originally passed to charge additional co-pays to families that have children with disabilities has now been placed on hold. What a HUGE relief! Thank you to those who wrote to the local and state governments on our behalf and on the behalf of all the other children with challenges. This is a small victory in the midst of many battles, but significant none the less.
Isaiah has been enjoying being home---we all have. He still has occasional bad days with stomach pain and has lost weight again, but he continues to take small steps forward. This Wednesday we see his surgeon and pulmonologist. Pray that the visits go well and we can continue to find ways to make Isaiah's life healthier and less painful. Thank you again for all your love, prayers, support, meals, gifts, cleaning, and helping with our home. Your willingness to follow God's leading continues to give us the strength to take each day as it comes.
Saturday, September 29, 2012
PA RESIDENTS.....PLEASE HELP US PUSH BACK
Hello Everyone,
I would like to share with you something I feel passionate about and feel something needs to be done. What I'm about to share with you not only affects my family and puts us in a bad spot, but also affects many of our friends who also have children with disabilities. Just when we thought we could start moving forward to try to get out of debt, we now have new unexpected expenses.
The PA Department of Public Welfare (PADPW) just imposed copays on all services for children and people with disabilities if you are over the poverty level. Isaiah currently receives medical assistance for his nursing, medical supplies, medications, therapies, etc. For most families, Medical Assistance kicks in after the family's primary insurance pays their part.
These new copays can add up rather quickly for children dealing with disabilities. The PADPW did put a cap on the max amount each family can be charged each month. However, it is set to 5% of the families monthly income, which adds up to a few hundred dollars (a car payment) each month that these families now have to pay. This does not take into consideration the fact that these same families already pay for Insurance Premiums from each paycheck for their primary insurance. The purpose of Medical Assistance is to help families dealing with disabilities cover the medical costs that are not covered by their primary insurance. Now the government wants these families to pay more to help balance the state budget.
http://www.phlp.org/state-budget-alert-copay
Please help us push back to get this bill over-turned. There are other ways to balance the budget without hurting families that are already dealing with added expenses and stressful situations.
The links below are Letter Templates you can use to send to the Governor and your Local Senator and Representative.
Letters:
PA Senator
https://docs.google.com/file/d/0B06GM2qruw_dQ1BvcVowYkwtdVU/edit?pli=1
PA Representative
https://docs.google.com/file/d/0B06GM2qruw_dY2pjVGp3M2Q4RVk/edit
PA Governor
https://docs.google.com/file/d/0B06GM2qruw_demdqdkRoWTN5Vm8/edit
Once you click on the link, a new window will open showing you the template.
Click on "File" and then "Download" and save it to your desktop.
Add your name and address and change your local Representative and Senator.
Print, Sign and Mail.
If you need to look up your Local Representative or Senator, please use the following link.
Thank you for helping us fight back as we continue to try to protect our family as well as other families dealing with children with special needs.
Chris Miller
I would like to share with you something I feel passionate about and feel something needs to be done. What I'm about to share with you not only affects my family and puts us in a bad spot, but also affects many of our friends who also have children with disabilities. Just when we thought we could start moving forward to try to get out of debt, we now have new unexpected expenses.
The PA Department of Public Welfare (PADPW) just imposed copays on all services for children and people with disabilities if you are over the poverty level. Isaiah currently receives medical assistance for his nursing, medical supplies, medications, therapies, etc. For most families, Medical Assistance kicks in after the family's primary insurance pays their part.
These new copays can add up rather quickly for children dealing with disabilities. The PADPW did put a cap on the max amount each family can be charged each month. However, it is set to 5% of the families monthly income, which adds up to a few hundred dollars (a car payment) each month that these families now have to pay. This does not take into consideration the fact that these same families already pay for Insurance Premiums from each paycheck for their primary insurance. The purpose of Medical Assistance is to help families dealing with disabilities cover the medical costs that are not covered by their primary insurance. Now the government wants these families to pay more to help balance the state budget.
http://www.phlp.org/state-budget-alert-copay
Please help us push back to get this bill over-turned. There are other ways to balance the budget without hurting families that are already dealing with added expenses and stressful situations.
The links below are Letter Templates you can use to send to the Governor and your Local Senator and Representative.
Letters:
PA Senator
https://docs.google.com/file/d/0B06GM2qruw_dQ1BvcVowYkwtdVU/edit?pli=1
PA Representative
https://docs.google.com/file/d/0B06GM2qruw_dY2pjVGp3M2Q4RVk/edit
PA Governor
https://docs.google.com/file/d/0B06GM2qruw_demdqdkRoWTN5Vm8/edit
Once you click on the link, a new window will open showing you the template.
Click on "File" and then "Download" and save it to your desktop.
Add your name and address and change your local Representative and Senator.
Print, Sign and Mail.
If you need to look up your Local Representative or Senator, please use the following link.
Thank you for helping us fight back as we continue to try to protect our family as well as other families dealing with children with special needs.
Chris Miller
Sunday, September 23, 2012
"I'M FREE!!! I'M FREE!!!"
These are the words Isaiah said the day the nurses removed the PICC line from his right arm. The PICC was the last of the IVs that kept Isaiah connected and tied down to a pole. He went running down the hallway, with his arms up in the air, yelling, "I'm free! I'm free!" He was all excited that he was finally disconnected from everything. He had been attached to some form of IV, life support, monitoring device, etc. for 3 months. He had all the staff laughing at his very expressive statement. On the day of his discharge, he received many hugs and kisses good-bye. They all said he would be greatly missed. I know he already misses all his "girlfriends" and his "buddies". He is such a lover!
We finally made it home this past Monday--Praise the Lord!!! It has been overwhelming trying to get back into the swing of things without the additional help and support from CHOP personnel and the PRMH. Thank you to everyone that helped us out while we were down in Philly. We could not have survived without your generosity and sacrifice of time. We are also so grateful to the people from our church, Calvary of Souderton, that came and cleaned our home as well as provided food and gifts for all of us as they welcomed us home. We also had a friend of my aunt's help clean and make our home more livable, for which we are grateful. We cannot thank those of you enough for the provided meals. We still have a lot to get adjusted to, but in a few more weeks, hopefully, we will have some semblance of order reestablished.
Few things that we need prayer for:
1. Our home insurance did NOT cover for new flooring to be put in--they paid for only a partial replacement of one room.
2. The boys and I are really suffering from our allergies to the mold in our carpets. We are back on Albuterol inhalers for the time being. Please pray that we won't have worsening of our symptoms or become more ill.
3. We still are waiting to hear if we received the grant for financial aid to help cover all the costs we've accrued over the past 4 months as well as new flooring. I am still out of work until Isaiah and our home-life stabilizes.
Thank you for supporting us on this journey. Isaiah is here because of the faithful prayers of many and his story continues to be told world-wide because of your faithfulness in spreading the awesome power and goodness of God.
We finally made it home this past Monday--Praise the Lord!!! It has been overwhelming trying to get back into the swing of things without the additional help and support from CHOP personnel and the PRMH. Thank you to everyone that helped us out while we were down in Philly. We could not have survived without your generosity and sacrifice of time. We are also so grateful to the people from our church, Calvary of Souderton, that came and cleaned our home as well as provided food and gifts for all of us as they welcomed us home. We also had a friend of my aunt's help clean and make our home more livable, for which we are grateful. We cannot thank those of you enough for the provided meals. We still have a lot to get adjusted to, but in a few more weeks, hopefully, we will have some semblance of order reestablished.
Few things that we need prayer for:
1. Our home insurance did NOT cover for new flooring to be put in--they paid for only a partial replacement of one room.
2. The boys and I are really suffering from our allergies to the mold in our carpets. We are back on Albuterol inhalers for the time being. Please pray that we won't have worsening of our symptoms or become more ill.
3. We still are waiting to hear if we received the grant for financial aid to help cover all the costs we've accrued over the past 4 months as well as new flooring. I am still out of work until Isaiah and our home-life stabilizes.
Thank you for supporting us on this journey. Isaiah is here because of the faithful prayers of many and his story continues to be told world-wide because of your faithfulness in spreading the awesome power and goodness of God.
Tuesday, September 11, 2012
COMING HOME...
Believe or not, there is talk for Isaiah to return home this Monday!!! I can't believe it--he hasn't been home in 4 months! I'm not sure how we will adjust to being a family again after so long! We have a lot to get done in the house before he gets home. Thankfully, Isaiah has been in good spirits and is charming the socks off of all the nurses, doctors, therapists, and all other staff members. I know they will miss him when he leaves.
Please pray for the following for us:
1. Approval for Home Care Nursing--we are trying to get back our 96 hours we had prior to Isaiah's hospitalization.
2. Healing of a sore at the base of Isaiah's spine.
3. That we get approval for a grant that will help replace the flooring in our home--because Isaiah threw up for 2 years, there is significant mold growth in the carpets. We had a professional come out and evaluate our floors. Until we can replace the carpets, we are going to do a cleaning that will hold us over until then. Pray that the boys and I won't have too many reactions to the mold.
4. That we will adjust smoothly back to being a family. It has been a long time since we have lived in the same house at the same time.
A Few Requests:
1. If any of you have time, we could use the help in getting our home cleaned this weekend before Isaiah comes home. Please let me know.
2. Also, meals would be fantastic! We do have a large freezer to store them. Until we get a routine reestablished, meals help relieve a huge load off of our shoulders.
Thank you again for all your prayers and support! We truly could not have made it this far without your love and strength!
Please pray for the following for us:
1. Approval for Home Care Nursing--we are trying to get back our 96 hours we had prior to Isaiah's hospitalization.
2. Healing of a sore at the base of Isaiah's spine.
3. That we get approval for a grant that will help replace the flooring in our home--because Isaiah threw up for 2 years, there is significant mold growth in the carpets. We had a professional come out and evaluate our floors. Until we can replace the carpets, we are going to do a cleaning that will hold us over until then. Pray that the boys and I won't have too many reactions to the mold.
4. That we will adjust smoothly back to being a family. It has been a long time since we have lived in the same house at the same time.
A Few Requests:
1. If any of you have time, we could use the help in getting our home cleaned this weekend before Isaiah comes home. Please let me know.
2. Also, meals would be fantastic! We do have a large freezer to store them. Until we get a routine reestablished, meals help relieve a huge load off of our shoulders.
Thank you again for all your prayers and support! We truly could not have made it this far without your love and strength!
Saturday, September 1, 2012
WITH HEAVY HEARTS...
We ask for you to pray for our family and our extended families as we lost two grandparents this past week. Grandpa Sylvio Bettio passed away on August 27, 2012. He is the father of my Aunt Linda Emr, my dad's sister-in-law. On August 29, 2012, my Grandma Roberta Emr also passed away. She was my dad's mom. Both families, the Bettios and Emrs, are struggling with the losses as well as all the friends and extended families whose lives were touched by these two people. We love them and will miss them. They will always be apart of our lives and their memories will live on in our hearts. Thank you for all your love, support, and prayers.
Monday, August 27, 2012
LADIES & GENTS, WE HAVE POOP!!!!!!!!
And you thought I was going to say lift-off?!?!? !0) I think my favorite thing about staying here at the Ronald McDonald House, is that I am surrounded by other moms that get just as excited as I do when our children pee, poop, or pass gas. It gets rather funny how crazy excited we get for each other and our kids. For example, one mom received a call from her baby's nurse that he pooped for the first time since delivery. He is a preemie with many complications. She was so thrilled, she asked the nurse to save it so she could see it, cause she couldn't believe it finally happened. When she got to CHOP, she found the nurse had wrapped the diaper up with a bow, which mom then proceeded to take a picture of it! I loved it!
We live in world so separated from the normal, that these small triumphs are HUGE victories in our children's lives. I swear, someday when Isaiah actually gets a chance to read this blog, he is going to ask me, "Mom, was it really necessary to tell the world I pooped?!?!?" I will say, "ABSOLUTELY YES!" You have to understand, Isaiah has now defied death twice. God allowed him to live through the pregnancy/delivery/birth, and now through this past bowel obstruction/strangulation. I honestly didn't realize til 3 days after his emergent surgery, that Isaiah was knocking on heaven's door, that his surgeon did not expect him to do well. I thought it was interesting his surgeon stayed until 4am to monitor him, but I didn't understand why til later--- it was because the surgeon wasn't sure Isaiah was going to survive. Your prayers, and God's desire to perform a miracle for a second time, changed the outcome of Isaiah's life once again. Thank you. So for me, when Isaiah's kidneys started to produce urine again---I was excited! When he passed gas on Thursday, I was even more excited! When he pooped twice yesterday, I celebrated with my fellow mommies that have been down this path before! WHOOOHOOO!!!!
So, in a nutshell, my friends, Isaiah's systems are starting to work normally again, which brings us just one step closer to going home. This next week, they will start clamping his G-Tube, allowing his stomach contents to go through his bowels, rather than out into a bag. Towards the end of the week or sometime next week, they may start him slowly on tube feeds. He has been out of bed a couple times a day to walk and is starting to participate in playtime. He continues to have quite a bit of pain and anxiety, but thankfully, he was able to come off of his continuous Dilaudid pain infusion, and they were able to back down on his anxiety medication. PROGRESS!!!!
Continue to pray for this next month, as it will be crazy busy. Josiah starts Kindergarten September 6th, but has several meetings before then. We are not sure how we are going to work out all the dynamics. Pray for pain relief for Isaiah and continued healing. We probably won't be home for another 4 weeks. Also, pray for a grant we applied for for Isaiah, that it would be approved. We won't know for another month if he qualifies. If we get it, it will allow us to purchase some much needed items for Isaiah, as well as offset some of the costs we are accruing.
Thank you again for your continual support and prayers. Isaiah is here because of your intervention, of your "standing in the gap" (Ezekiel 22:30) for us before the throne of God. For this, we will be eternally grateful.
Jeremiah 1:5, "Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations." Isaiah's journey continues to go around the world. He is a testament to God's greatness and faithfulness. Isaiah is a prophet to the nations, a miracle created only by God's hand.
We live in world so separated from the normal, that these small triumphs are HUGE victories in our children's lives. I swear, someday when Isaiah actually gets a chance to read this blog, he is going to ask me, "Mom, was it really necessary to tell the world I pooped?!?!?" I will say, "ABSOLUTELY YES!" You have to understand, Isaiah has now defied death twice. God allowed him to live through the pregnancy/delivery/birth, and now through this past bowel obstruction/strangulation. I honestly didn't realize til 3 days after his emergent surgery, that Isaiah was knocking on heaven's door, that his surgeon did not expect him to do well. I thought it was interesting his surgeon stayed until 4am to monitor him, but I didn't understand why til later--- it was because the surgeon wasn't sure Isaiah was going to survive. Your prayers, and God's desire to perform a miracle for a second time, changed the outcome of Isaiah's life once again. Thank you. So for me, when Isaiah's kidneys started to produce urine again---I was excited! When he passed gas on Thursday, I was even more excited! When he pooped twice yesterday, I celebrated with my fellow mommies that have been down this path before! WHOOOHOOO!!!!
So, in a nutshell, my friends, Isaiah's systems are starting to work normally again, which brings us just one step closer to going home. This next week, they will start clamping his G-Tube, allowing his stomach contents to go through his bowels, rather than out into a bag. Towards the end of the week or sometime next week, they may start him slowly on tube feeds. He has been out of bed a couple times a day to walk and is starting to participate in playtime. He continues to have quite a bit of pain and anxiety, but thankfully, he was able to come off of his continuous Dilaudid pain infusion, and they were able to back down on his anxiety medication. PROGRESS!!!!
Continue to pray for this next month, as it will be crazy busy. Josiah starts Kindergarten September 6th, but has several meetings before then. We are not sure how we are going to work out all the dynamics. Pray for pain relief for Isaiah and continued healing. We probably won't be home for another 4 weeks. Also, pray for a grant we applied for for Isaiah, that it would be approved. We won't know for another month if he qualifies. If we get it, it will allow us to purchase some much needed items for Isaiah, as well as offset some of the costs we are accruing.
Thank you again for your continual support and prayers. Isaiah is here because of your intervention, of your "standing in the gap" (Ezekiel 22:30) for us before the throne of God. For this, we will be eternally grateful.
Jeremiah 1:5, "Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations." Isaiah's journey continues to go around the world. He is a testament to God's greatness and faithfulness. Isaiah is a prophet to the nations, a miracle created only by God's hand.
Thursday, August 23, 2012
WEDNESDAY---A GOOD DAY...
Yesterday was a good day for Isaiah...Praise the Lord! Thank you for praying, because God has been answering. Even though Isaiah still has a significant amount of pain, and needs frequent pain medication rescues, he was able to sit at the side of the bed, to work with Occupational therapy, was out to a chair for a couple of hours, and he was able to pull himself up to a sitting position without any assistance. He also walked a few steps from his bed to the couch. Amazingly, I heard bowels sounds today, which is HUGE! He is asking to drink and eat...also, steps in the right direction. Unfortunately, he won't be allowed to eat or drink for at least another week. Pray for patience and endurance in this area for Isaiah, and that maybe God would remove this desire just until he is allowed to have food/drink again. Please continue to pray for good days and peaceful nights.
It has been nice having Josiah down here this week. He brings so much joy to Isaiah. Isaiah asked 1 1/2 days after surgery if Josiah could climb into the crib with him. Even in pain and discomfort, Isaiah absolutely loves being close to his big brother. We are truly blessed to have 2 little boys that love each other and are best friends. They are fiercely protective of each other.
As Josiah starts school in the next couple of weeks, things are going to be a bit tricky scheduling everything. Please pray for wisdom as we make decisions as a couple that would be beneficial to all of us. If anyone is able to help us out during the month of September with either sitting with Isaiah here at CHOP (including some overnights), or helping with getting Josiah back and forth to school, please let us know. We truly are incredibly grateful for all the help we have received so far. We cannot say "Thank you" enough, nor do we have words to adequately express how much your generosity has meant to us. Your strength and hope helps us keep moving forward.
Please continue to pray for the following children at CHOP that are fighting to overcome serious health obstacles: Braydee (open heart surgery), Kaitlyn, Fatima, Maria, Dwayne (waiting for a heart transplant), Aiden (brain cancer), KeVaughn (KE), Seth (needs surgery again), Hugo, Koby, Josiah, London (eye cancer), Ella (eye cancer), Olivia, Brooke (cancer), and Richie (cancer). Thank you and God bless.
It has been nice having Josiah down here this week. He brings so much joy to Isaiah. Isaiah asked 1 1/2 days after surgery if Josiah could climb into the crib with him. Even in pain and discomfort, Isaiah absolutely loves being close to his big brother. We are truly blessed to have 2 little boys that love each other and are best friends. They are fiercely protective of each other.
As Josiah starts school in the next couple of weeks, things are going to be a bit tricky scheduling everything. Please pray for wisdom as we make decisions as a couple that would be beneficial to all of us. If anyone is able to help us out during the month of September with either sitting with Isaiah here at CHOP (including some overnights), or helping with getting Josiah back and forth to school, please let us know. We truly are incredibly grateful for all the help we have received so far. We cannot say "Thank you" enough, nor do we have words to adequately express how much your generosity has meant to us. Your strength and hope helps us keep moving forward.
Please continue to pray for the following children at CHOP that are fighting to overcome serious health obstacles: Braydee (open heart surgery), Kaitlyn, Fatima, Maria, Dwayne (waiting for a heart transplant), Aiden (brain cancer), KeVaughn (KE), Seth (needs surgery again), Hugo, Koby, Josiah, London (eye cancer), Ella (eye cancer), Olivia, Brooke (cancer), and Richie (cancer). Thank you and God bless.
Monday, August 20, 2012
OUT OF SURGERY...
Isaiah went into surgery around 12 noon, and came out around 2:45p. However, we did not get back to his room until 9pm. He was having a lot of uncontrolled severe pain that was causing him to have very high heart rates and low oxygen levels. He's been holding his breath (splinting), instead of taking deep breaths because his belly hurts. He's turned blue a couple of times and has needed oxygen. We are hoping that with being back in his room, he will be more comfortable and calm down. If Isaiah continues to need large amounts of pain medication or blow-by oxygen, he may need to be transferred back to PICU for closer observation/monitoring. Please pray that his anxiety levels and pain levels come under better control. We would like to have a nice recovery in his room.
Thank you for your continued prayers and support. Isaiah still has a long road ahead of him and recovery will be slow--this is expected. Continue to pray for patience and endurance for us. Pray for Isaiah's bowels that they will heal quickly. Pray for Josiah as this is all very overwhelming for him. Thankfully, Chris's mom Viviane, is down with us this week and in 2 weeks, my mom will be back up here from TN to help us out. We have been so thankful for all the help from everyone.
Thank you for your continued prayers and support. Isaiah still has a long road ahead of him and recovery will be slow--this is expected. Continue to pray for patience and endurance for us. Pray for Isaiah's bowels that they will heal quickly. Pray for Josiah as this is all very overwhelming for him. Thankfully, Chris's mom Viviane, is down with us this week and in 2 weeks, my mom will be back up here from TN to help us out. We have been so thankful for all the help from everyone.
Sunday, August 19, 2012
SURGERY IS SCHEDULED...
August 20th is the set date for Isaiah's reversal ostomy surgery. He is scheduled for 11:30 tomorrow morning, and the plan is to put back together his intestines with the hope that his bowels will start reabsorbing nutrients again. Please pray that all goes well, and that 3-4 weeks from now, we can go home. This has been a very grueling journey for all of us. We are scared for this surgery, seeing we almost lost him during the last one. Plus, if his intestines don't start working again, we will need to remain here much longer. We need another miracle in his little body.
Thankfully, his spirits remain high. He is happy and playful, and continues to flirt with all the nurses telling them they are "pretty" or "beautiful". He is rather entertaining to watch in action. In a nutshell, we know we are definitely in trouble when he gets older. He already thinks he is a "ladies man".
Tonight we were able to spend time together as a family, reading devotions, and praying together. We definitely miss doing this regularly. Josiah is so sweet and gentle to his little brother. There is so much love between them. We are blessed to have 2 wonderful boys whom absolutely adore one another. We long for the day they can play together without a care in the world. Thank you for continuing to pray and lift us up. You are partners with us in this journey, and your strength allows us to continue putting one foot in front of the other.
Thankfully, his spirits remain high. He is happy and playful, and continues to flirt with all the nurses telling them they are "pretty" or "beautiful". He is rather entertaining to watch in action. In a nutshell, we know we are definitely in trouble when he gets older. He already thinks he is a "ladies man".
Tonight we were able to spend time together as a family, reading devotions, and praying together. We definitely miss doing this regularly. Josiah is so sweet and gentle to his little brother. There is so much love between them. We are blessed to have 2 wonderful boys whom absolutely adore one another. We long for the day they can play together without a care in the world. Thank you for continuing to pray and lift us up. You are partners with us in this journey, and your strength allows us to continue putting one foot in front of the other.
Sunday, August 12, 2012
TENTATIVE SURGERY DATE...
It's hard to believe that poor Isaiah has been at CHOP for 7 weeks and has not been home in 10! This has been an incredibly long journey and terribly painful at times. Thankfully, Isaiah has been in relatively good spirits the last few weeks, considering all he has been through. It has helped that he has had different friends and family stay with him, distract him, and bring fun things to play with. Thank you to everyone that has helped Isaiah cope with not so normal circumstances.
As of right now, we have a tentative surgical date for August 20th. Isaiah has continued to dump his food/nutrients out into the ostomy bag and has not been able to come off of his IV nutrition, despite all of their tricks. Dr. Collins is hoping that by reattaching the rest of his bowels, Isaiah will have a better chance of absorbing. It is not guaranteed that Isaiah's bowels will start reabsorbing, and that scares us. We have no where else to go right now, except into surgery. Please, please, please pray that this reattaching works. This will be a multi-step surgery as pulmonology and ENT need to get biopsies from Isaiah's lungs and nasal passages.. They are trying to rule out PCD, a possible diagnosis we were given back in March. We are still looking at another 6 weeks here.
As school starts soon for Josiah, we are just not sure how to manage everything. We won't be home before he starts kindergarten. Isaiah was also to start a specialized pre-K that incorporated some of his therapies. Pray that we can somehow figure out how to manage the boys, because so much has already been stripped from them. Regularly, one or both will say to us, "I want to go home and sleep in my own bed," or, "I want to be with you"; "I miss you"; "Don't leave me," or "I'll be good." It's heartbreaking for us to see them in pain. We just wish they could have a normal childhood, running and jumping, playing with their friends, looking forward to school. This year alone, we've been home only in January and May. The rest has been spent in a hospital or rehab setting. However, we've adapted the saying, "It could always be worse."
Continue to pray for the following children: baby Kaitlyn and her family, as they are in a very tough situation. Also, Dwayne (9 yrs. old) is waiting for a new heart. Seth starts a new therapy regimen. Aidan is still fighting brain cancer and his mom just had another baby boy, Brenden, who has a heart condition. Thank you for praying for Taylor. She finished her cancer treatments and was able to go home. Babies Fatima and Maria continue to get better, though it is very slow going. Baby Jenny was stable enough to be transported back to a hospital in Canada where she is from. We know all these parents covet your prayers just as much as we do and would say thank you if they had the opportunity.
On a side note, my grandpa, Dr. David Solt, had a heart attack this weekend. He was rushed to Doylestown hospital where had a catheterization and stent placement. He is doing ok, but we would covet your prayers for him as well. Both he and my grandma have been our faithful prayer warriors for years.
As of right now, we have a tentative surgical date for August 20th. Isaiah has continued to dump his food/nutrients out into the ostomy bag and has not been able to come off of his IV nutrition, despite all of their tricks. Dr. Collins is hoping that by reattaching the rest of his bowels, Isaiah will have a better chance of absorbing. It is not guaranteed that Isaiah's bowels will start reabsorbing, and that scares us. We have no where else to go right now, except into surgery. Please, please, please pray that this reattaching works. This will be a multi-step surgery as pulmonology and ENT need to get biopsies from Isaiah's lungs and nasal passages.. They are trying to rule out PCD, a possible diagnosis we were given back in March. We are still looking at another 6 weeks here.
As school starts soon for Josiah, we are just not sure how to manage everything. We won't be home before he starts kindergarten. Isaiah was also to start a specialized pre-K that incorporated some of his therapies. Pray that we can somehow figure out how to manage the boys, because so much has already been stripped from them. Regularly, one or both will say to us, "I want to go home and sleep in my own bed," or, "I want to be with you"; "I miss you"; "Don't leave me," or "I'll be good." It's heartbreaking for us to see them in pain. We just wish they could have a normal childhood, running and jumping, playing with their friends, looking forward to school. This year alone, we've been home only in January and May. The rest has been spent in a hospital or rehab setting. However, we've adapted the saying, "It could always be worse."
Continue to pray for the following children: baby Kaitlyn and her family, as they are in a very tough situation. Also, Dwayne (9 yrs. old) is waiting for a new heart. Seth starts a new therapy regimen. Aidan is still fighting brain cancer and his mom just had another baby boy, Brenden, who has a heart condition. Thank you for praying for Taylor. She finished her cancer treatments and was able to go home. Babies Fatima and Maria continue to get better, though it is very slow going. Baby Jenny was stable enough to be transported back to a hospital in Canada where she is from. We know all these parents covet your prayers just as much as we do and would say thank you if they had the opportunity.
On a side note, my grandpa, Dr. David Solt, had a heart attack this weekend. He was rushed to Doylestown hospital where had a catheterization and stent placement. He is doing ok, but we would covet your prayers for him as well. Both he and my grandma have been our faithful prayer warriors for years.
Thursday, August 2, 2012
VERY LITTLE PROGRESS...
Isaiah has made very little progress over the last several weeks. He is in great spirits; it's just his body that needs to catch up. He has NOT been eating by mouth, and what little feeds he has been getting through his G-tube, he has NOT been absorbing. He continues to dump out into his colostomy bag. The team will tweak what goes into his stomach, and he will do well for a couple of days. But, then his GI system starts to dump the nutrients out into the colostomy. This is what is keeping us here at CHOP. Isaiah cannot come off the IV nutrition (TPN/Lipids) until he is stable enough on either the tube feeds and/or food by mouth. It is very frustrating. All the progress we had made with eating at Good Shepherd is now a moot point. It's as if we were never there. However, we do have 2 small praises and they are that Isaiah's liver enzymes are returning to normal and he continues to gain weight. We take what we can get.
*Tomorrow, Isaiah needs his PICC line replaced. One of the ports was cracked during routine care/cleaning. He must go under general anesthesia. Please pray that the IR team can successfully and safely change out the PICC IV with little problems or resistance. Having the PICC cracked leaves Isaiah wide open to an infection getting into his central blood system. This has been very nerve wracking. Pray that Isaiah stays healthy and continues to remain infection free.*
There are 2 families that especially need God's intervention right now. They have both been given very difficult news this week. Julian, a 5 yr. old boy, has been fighting cancer over the past year and has gone through every treatment available. His body still has cancer. Even though the doctors have not given much hope, God can still do a miracle. The other family has a newborn daughter, Kaitlyn, that has really been struggling to survive this week. She is a tough little girl. Pray for miracles in both of these situations. Pray especially for the parents as this is all very overwhelming and draining.
Of all the stays we have had at CHOP and the Ronald McDonald House, this time has been particularly difficult on everyone. Usually, there are a few success stories with kids going home, which gives us all hope, keeps us excited, and keeps us going. However, we are finding most of us here are struggling with prolonged illnesses, significant setbacks, or must overcome huge physical/health obstacles. We need to see some serious God-intervention.
Please continue to pray for the following children at CHOP: Seth, Maria, Jenny, Fatima, Josiah, Jax, Bailey, London, Eddie, Aiden, Dasha, Taylor, Jonathan, and others. We have had the privilege to meet all of their families, and they are all an amazing group of people. We did see one huge praise when Grace, 4 yrs. old, was able to go home shortly after major back surgery! What an amazing child she is!!!!
Thank you for your continued love, support, prayers, etc. Tired does not even begin to express how we feel. But, your persistent petitioning to God has kept us going. We don't know how much longer we will be here. They keep saying another 6-8 weeks (we've been here almost 6 weeks). This time frame can be shortened significantly if Isaiah's body starts to absorb nutrients and stabilizes. That is our prayer.
*Tomorrow, Isaiah needs his PICC line replaced. One of the ports was cracked during routine care/cleaning. He must go under general anesthesia. Please pray that the IR team can successfully and safely change out the PICC IV with little problems or resistance. Having the PICC cracked leaves Isaiah wide open to an infection getting into his central blood system. This has been very nerve wracking. Pray that Isaiah stays healthy and continues to remain infection free.*
There are 2 families that especially need God's intervention right now. They have both been given very difficult news this week. Julian, a 5 yr. old boy, has been fighting cancer over the past year and has gone through every treatment available. His body still has cancer. Even though the doctors have not given much hope, God can still do a miracle. The other family has a newborn daughter, Kaitlyn, that has really been struggling to survive this week. She is a tough little girl. Pray for miracles in both of these situations. Pray especially for the parents as this is all very overwhelming and draining.
Of all the stays we have had at CHOP and the Ronald McDonald House, this time has been particularly difficult on everyone. Usually, there are a few success stories with kids going home, which gives us all hope, keeps us excited, and keeps us going. However, we are finding most of us here are struggling with prolonged illnesses, significant setbacks, or must overcome huge physical/health obstacles. We need to see some serious God-intervention.
Please continue to pray for the following children at CHOP: Seth, Maria, Jenny, Fatima, Josiah, Jax, Bailey, London, Eddie, Aiden, Dasha, Taylor, Jonathan, and others. We have had the privilege to meet all of their families, and they are all an amazing group of people. We did see one huge praise when Grace, 4 yrs. old, was able to go home shortly after major back surgery! What an amazing child she is!!!!
Thank you for your continued love, support, prayers, etc. Tired does not even begin to express how we feel. But, your persistent petitioning to God has kept us going. We don't know how much longer we will be here. They keep saying another 6-8 weeks (we've been here almost 6 weeks). This time frame can be shortened significantly if Isaiah's body starts to absorb nutrients and stabilizes. That is our prayer.
Wednesday, July 25, 2012
LITTLE BY LITTLE...
We have now been here at CHOP for almost 5 weeks. It has been a long arduous process. Isaiah continues to improve daily, though it has been infinitesimally slow. We will still be here another 6-8 weeks, unless he makes some dramatic change for the better.
Thankfully, he has stopped dumping out the ostomy and has been able to start back on real food. He is not eating much, but we are hoping the more he eats, the more the doctors can back off the TPN/Lipids. The TPN/Lipids are still affecting his liver negatively. At one point, his liver function tests started to decrease (which is good), but now the levels are starting to go back up again (which is bad). The docs are not sure why they are going up and don't seem very concerned, but I am because Isaiah has never had problems before being on TPN/Lipids. So, for some unknown reason his liver is not filtrating correctly. Please pray that God protects Isaiah's liver and the rest of his little body.
Praises:
1. Isaiah is gaining weight.
2. His outbursts and negative/abusive behavior has decreased significantly. I think it has helped to have breaks from us on the weekends. Thank you to those who have been spending days/nights with Isaiah to allow us time away from the hospital.
3. Josiah has been able to stay down here with us, and we have found some fun and free activities to do together.
4. The Lord has opened up doors for us to share our faith in Christ. Because we struggle with this path of disability, and are not ashamed to say it is difficult and we struggle with God's sovereignty, people feel free to talk to us and share their doubts about God. Struggling together gives us a freedom we would have never experienced if Isaiah were not here.
5. The floors in the boy's rooms at home have been replaced. A HUGE THANK YOU to Charles, Jake, Dan, Josh, Chris, Glenn for helping us out with this.
Prayer Requests:
1. For Isaiah's liver and the rest of his body to be protected from the TPN/Lipids and medications/therapies.
2. For the following children: they are either fighting for their lives or are seriously physically compromised from disabilities: Grace (4yrs. old from Florida), Hugo (preemie, born at 24 weeks), Marie (newborn from Egypt), Jenny (newborn from Egypt), Fatima (newborn from New Jersey), and Abdul (8 month old from NJ). We have seen prayer work and the parents would greatly appreciate your support.
Thank you again for continuing to pray and support us.
Thankfully, he has stopped dumping out the ostomy and has been able to start back on real food. He is not eating much, but we are hoping the more he eats, the more the doctors can back off the TPN/Lipids. The TPN/Lipids are still affecting his liver negatively. At one point, his liver function tests started to decrease (which is good), but now the levels are starting to go back up again (which is bad). The docs are not sure why they are going up and don't seem very concerned, but I am because Isaiah has never had problems before being on TPN/Lipids. So, for some unknown reason his liver is not filtrating correctly. Please pray that God protects Isaiah's liver and the rest of his little body.
Praises:
1. Isaiah is gaining weight.
2. His outbursts and negative/abusive behavior has decreased significantly. I think it has helped to have breaks from us on the weekends. Thank you to those who have been spending days/nights with Isaiah to allow us time away from the hospital.
3. Josiah has been able to stay down here with us, and we have found some fun and free activities to do together.
4. The Lord has opened up doors for us to share our faith in Christ. Because we struggle with this path of disability, and are not ashamed to say it is difficult and we struggle with God's sovereignty, people feel free to talk to us and share their doubts about God. Struggling together gives us a freedom we would have never experienced if Isaiah were not here.
5. The floors in the boy's rooms at home have been replaced. A HUGE THANK YOU to Charles, Jake, Dan, Josh, Chris, Glenn for helping us out with this.
Prayer Requests:
1. For Isaiah's liver and the rest of his body to be protected from the TPN/Lipids and medications/therapies.
2. For the following children: they are either fighting for their lives or are seriously physically compromised from disabilities: Grace (4yrs. old from Florida), Hugo (preemie, born at 24 weeks), Marie (newborn from Egypt), Jenny (newborn from Egypt), Fatima (newborn from New Jersey), and Abdul (8 month old from NJ). We have seen prayer work and the parents would greatly appreciate your support.
Thank you again for continuing to pray and support us.
Monday, July 16, 2012
MOVING SLOWLY AHEAD...
This past Thursday we had a team meeting for Isaiah. We discussed his pain, his anxiety, and the doctor's plan for his stay. For the most part, it was a productive meeting; however, both Chris and I still feel that the doctors don't fully believe us in regards to Isaiah's pain levels. As of right now, Dr. Collins, the surgeon, believes Isaiah will be at CHOP for another 6-8 weeks. UGH!!! His bowels are still not absorbing the nutrients and fluids necessary for him to come off of the IV nutrition (TPN/Lipids). He continues to dump out into the ostomy bag (stomach/poop bag) causing his electrolytes in his blood work to be unstable. They are trying him out on actual food by mouth to see if his gut can absorb food better than the TPN/Lipids. Plus, the Lipids are affecting his liver negatively.
So in short,
GOOD NEWS:
1. Isaiah is able to eat by mouth
2. He is up walking and playing
3. We have a time frame in regards to his hospital stay
BAD NEWS:
1. We have another 6-8 weeks at CHOP
2. His reversal surgery of the ostomy cannot be performed until he is more
medically stable and absorbing nutrients
3. He is still having pain
4. Isaiah has been having dangerous, angry meltdowns that lead him to try to hurt others and/or hurt himself by pulling off his ostomy appliances or trying to pull out his PICC (IV) line. He is like a Dr.Jekyll/Mr.Hyde. When that switch flips, Isaiah is out of control and needs to be restrained or sedated. It is incredibly frustrating for us. Usually, Isaiah is cooperative, but lately these fits have been coming more and more frequently.
5. Isaiah has significant anxiety and cannot be left alone. In the past, we have been able to leave him alone for a few hours or overnight and he is fine. Now, he becomes inconsolable if we tell him we are leaving or if he finds us gone.
6. We have spent the months of February, March, April, June, and July in a hospital or rehab setting. This has become very difficult on all of us. I think Josiah gets the worst of it, because he has to be switched from place to place, and has been separated from us the most.
7. My relationship with Isaiah is very strained because of having to be with him in restrictive quarters for the past 6+ weeks. It's incredibly hard for me at times to be around him.
Please continue to pray. We are all really struggling. We are grateful to those whom have come down or up to stay with Isaiah either during the days and/or overnights. I think it's a nice break for him and a very necessary break for us. Thank you for all your gifts and words of encouragement--they keep us going.
--Pray for Josiah with all the moving around.
--Pray for Chris as his job is in the middle of a merger with people quitting and departments being reorganized.
--Pray for my neck/back/hips. I am still having pain from the accident and do need follow up visits with doctors, but I really don't have the ability to follow through at this time.
--Pray that Isaiah's gut starts absorbing and tolerating food/nutrients, that he has fewer meltdowns and/or stays safe during his meltdowns.
--Pray for my relationship with Isaiah.
--Pray that we can go safely home sooner than later. I am missing Josiah immensely. He brings me so much happiness, and when I am not around him, my world is a bit darker/sadder. I just wish we could be home and all be healthy.
--Pray for my relationship with God. I'll admit I am angry with Him and frustrated. This situation takes a lot of strength and endurance and I am plain exhausted, as is Chris. I don't want to keep walking this path God has chosen; I want a break. Somehow, I need to trust God and give Him this whole situation so I can rest peacefully in Him. Right now, I am fighting Him because I just don't know how else to survive.
So in short,
GOOD NEWS:
1. Isaiah is able to eat by mouth
2. He is up walking and playing
3. We have a time frame in regards to his hospital stay
BAD NEWS:
1. We have another 6-8 weeks at CHOP
2. His reversal surgery of the ostomy cannot be performed until he is more
medically stable and absorbing nutrients
3. He is still having pain
4. Isaiah has been having dangerous, angry meltdowns that lead him to try to hurt others and/or hurt himself by pulling off his ostomy appliances or trying to pull out his PICC (IV) line. He is like a Dr.Jekyll/Mr.Hyde. When that switch flips, Isaiah is out of control and needs to be restrained or sedated. It is incredibly frustrating for us. Usually, Isaiah is cooperative, but lately these fits have been coming more and more frequently.
5. Isaiah has significant anxiety and cannot be left alone. In the past, we have been able to leave him alone for a few hours or overnight and he is fine. Now, he becomes inconsolable if we tell him we are leaving or if he finds us gone.
6. We have spent the months of February, March, April, June, and July in a hospital or rehab setting. This has become very difficult on all of us. I think Josiah gets the worst of it, because he has to be switched from place to place, and has been separated from us the most.
7. My relationship with Isaiah is very strained because of having to be with him in restrictive quarters for the past 6+ weeks. It's incredibly hard for me at times to be around him.
Please continue to pray. We are all really struggling. We are grateful to those whom have come down or up to stay with Isaiah either during the days and/or overnights. I think it's a nice break for him and a very necessary break for us. Thank you for all your gifts and words of encouragement--they keep us going.
--Pray for Josiah with all the moving around.
--Pray for Chris as his job is in the middle of a merger with people quitting and departments being reorganized.
--Pray for my neck/back/hips. I am still having pain from the accident and do need follow up visits with doctors, but I really don't have the ability to follow through at this time.
--Pray that Isaiah's gut starts absorbing and tolerating food/nutrients, that he has fewer meltdowns and/or stays safe during his meltdowns.
--Pray for my relationship with Isaiah.
--Pray that we can go safely home sooner than later. I am missing Josiah immensely. He brings me so much happiness, and when I am not around him, my world is a bit darker/sadder. I just wish we could be home and all be healthy.
--Pray for my relationship with God. I'll admit I am angry with Him and frustrated. This situation takes a lot of strength and endurance and I am plain exhausted, as is Chris. I don't want to keep walking this path God has chosen; I want a break. Somehow, I need to trust God and give Him this whole situation so I can rest peacefully in Him. Right now, I am fighting Him because I just don't know how else to survive.
Thursday, July 5, 2012
HAPPY 4th...
Thanks to my mother-in-law, Viviane, staying with Isaiah overnight, we were able to have a really enjoyable time with my immediate and extended family at a picnic and then fireworks. We really needed that time to relax, laugh, and have fun. Plus, it was nice to see Josiah run, play, and just enjoy being a little boy.
We continue to covet your prayers and support. Isaiah is out of ICU, however, he is expected to have a long recovery. Best case scenario, Isaiah's bowels recover enough for reversal surgery before discharge in 2-3 weeks. Worst case, we are stuck her for another 6-8 weeks. Isaiah has been having trouble absorbing nutrients and fluids through his stomach and bowels, and the doctors have had to replace this loss daily. If he continues to lose nutrients, he will have to stay on IV nutrition much longer until he is stable enough for another surgery. Also, we are still dealing with pain management issues. We continue to fight with doctors on how much and how often to medicate Isaiah for comfort.
We are now staying at the Ronald McDonald House. We really enjoyed staying at our friend Sarah's apartment. It was nice, clean, and quiet. However, for Josiah's sake, once the Ronald House had an opening, we accepted a room. There are kids here for him to play with as well as a game room and playground. The House allows for some normalcy for Josiah.
Many ask how we are doing, how we are holding up--well, to be honest, we are incredibly exhausted. Josiah said the other day he is sad because we are not home and that he misses his room. Isaiah is completely out of sorts and has been very difficult to work with and even to be around. This particular hospitalization has been excruciatingly draining.
Besides Isaiah's condition, I think one of the hardest things we are dealing with is disappointment. We thought we saw a light at the end of the tunnel with Good Shepherd's rehab clinic with only 2-3 weeks left in Isaiah's program. Isaiah was doing so well with eating and drinking. Now, we are back at square one. We were looking forward to finally having less people coming through our home every day, ie. nurses, therapists, case managers. For the past 3 years, our house has not been a home, but more like a hospital/treatment/rehab/recovery center for Isaiah. As much as we appreciate all the help we receive for Isaiah, we really long for privacy and to have a safe haven all our own.
Please pray for the following:
1. For rest--that when we do get a break, that we can actually sleep and recuperate.
2. For Isaiah--for quick recovery, pain relief, that his stomach/bowels start absorbing nutrients, and that his fun, obedient, and sweet spirit comes back.
3. For Josiah--that he knows how much we love him and are here for him.
4. For Chris--safety as he commutes back and forth for work. Also, his work is going through a buyout and reconstruction which adds more stress and confusion in his work life.
5. For my neck/back--on Sunday, I headed back to HUP for more tests on my back. I was experiencing numbness in both of my arms for 2 days which was taking awhile to resolve. They did an MRI of my neck and and x-ray of my back--both of which came back normal. I am still having periodic muscle spasms from the accident.
A big thanks to my mom, Lois, that took time off work, flew up from TN, to give us a few nights off from CHOP. Also, to my brother, Doug and my new sister-in-love, Sarah, for also staying at CHOP with Isaiah. Our other friend, Sarah, is going to take the next 2 nights for us. We don't know what we would do without these breaks. Thank you again for all your prayers, support, gifts, emails, calls, letters, etc. We really are very dependent on your strength and love. Somehow, we hope that through all of this, God's name will be glorified and that we can see Him working. Sometimes it's just hard to see His goodness in the midst of all of this.
We continue to covet your prayers and support. Isaiah is out of ICU, however, he is expected to have a long recovery. Best case scenario, Isaiah's bowels recover enough for reversal surgery before discharge in 2-3 weeks. Worst case, we are stuck her for another 6-8 weeks. Isaiah has been having trouble absorbing nutrients and fluids through his stomach and bowels, and the doctors have had to replace this loss daily. If he continues to lose nutrients, he will have to stay on IV nutrition much longer until he is stable enough for another surgery. Also, we are still dealing with pain management issues. We continue to fight with doctors on how much and how often to medicate Isaiah for comfort.
We are now staying at the Ronald McDonald House. We really enjoyed staying at our friend Sarah's apartment. It was nice, clean, and quiet. However, for Josiah's sake, once the Ronald House had an opening, we accepted a room. There are kids here for him to play with as well as a game room and playground. The House allows for some normalcy for Josiah.
Many ask how we are doing, how we are holding up--well, to be honest, we are incredibly exhausted. Josiah said the other day he is sad because we are not home and that he misses his room. Isaiah is completely out of sorts and has been very difficult to work with and even to be around. This particular hospitalization has been excruciatingly draining.
Besides Isaiah's condition, I think one of the hardest things we are dealing with is disappointment. We thought we saw a light at the end of the tunnel with Good Shepherd's rehab clinic with only 2-3 weeks left in Isaiah's program. Isaiah was doing so well with eating and drinking. Now, we are back at square one. We were looking forward to finally having less people coming through our home every day, ie. nurses, therapists, case managers. For the past 3 years, our house has not been a home, but more like a hospital/treatment/rehab/recovery center for Isaiah. As much as we appreciate all the help we receive for Isaiah, we really long for privacy and to have a safe haven all our own.
Please pray for the following:
1. For rest--that when we do get a break, that we can actually sleep and recuperate.
2. For Isaiah--for quick recovery, pain relief, that his stomach/bowels start absorbing nutrients, and that his fun, obedient, and sweet spirit comes back.
3. For Josiah--that he knows how much we love him and are here for him.
4. For Chris--safety as he commutes back and forth for work. Also, his work is going through a buyout and reconstruction which adds more stress and confusion in his work life.
5. For my neck/back--on Sunday, I headed back to HUP for more tests on my back. I was experiencing numbness in both of my arms for 2 days which was taking awhile to resolve. They did an MRI of my neck and and x-ray of my back--both of which came back normal. I am still having periodic muscle spasms from the accident.
A big thanks to my mom, Lois, that took time off work, flew up from TN, to give us a few nights off from CHOP. Also, to my brother, Doug and my new sister-in-love, Sarah, for also staying at CHOP with Isaiah. Our other friend, Sarah, is going to take the next 2 nights for us. We don't know what we would do without these breaks. Thank you again for all your prayers, support, gifts, emails, calls, letters, etc. We really are very dependent on your strength and love. Somehow, we hope that through all of this, God's name will be glorified and that we can see Him working. Sometimes it's just hard to see His goodness in the midst of all of this.
Friday, June 29, 2012
ONE STEP AT A TIME...
Isaiah is still in ICU, but every day is a little better. According to his surgeon, Isaiah is doing much better than he had anticipated in spite of all the damage, inflammation, leakage of toxins into his abdomen, and amount of dilated bowels which were on the verge of perforating (exploding open). He continues to have a lot of pain and we are still struggling to get it under control with the appropriate medications.
Today he is getting a PICC line placed, which is an IV that can be used long-term. His central IV line (TLC) will be taken out today, while all other lines have already been removed, which is encouraging. He continues to be on IV nutrition, and will be for awhile to allow for bowel rest and healing. It will be at least another week before they start tube feeds--they will be very conservative in reintroducing foods.
Yesterday, Isaiah sat up for 1.5 hrs at bedside playing with his toys and painting. He was so cute and it was nice to see him up and interacting with his 3 therapists. Hopefully, we will get him up to walk today, once the central line is out.
Thank you again for all the support you've given to us. We will be here for approximately another 3 weeks. We do have a place to stay in town, thanks to some wonderful friends of ours. God has been good, even though the situation has been extremely difficult.
Today he is getting a PICC line placed, which is an IV that can be used long-term. His central IV line (TLC) will be taken out today, while all other lines have already been removed, which is encouraging. He continues to be on IV nutrition, and will be for awhile to allow for bowel rest and healing. It will be at least another week before they start tube feeds--they will be very conservative in reintroducing foods.
Yesterday, Isaiah sat up for 1.5 hrs at bedside playing with his toys and painting. He was so cute and it was nice to see him up and interacting with his 3 therapists. Hopefully, we will get him up to walk today, once the central line is out.
Thank you again for all the support you've given to us. We will be here for approximately another 3 weeks. We do have a place to stay in town, thanks to some wonderful friends of ours. God has been good, even though the situation has been extremely difficult.
Tuesday, June 26, 2012
UNCONTROLLED PAIN...
Yesterday, Isaiah was stable enough to have his breathing tube removed as well his arterial line that monitored his blood pressure continuously. Even though he is breathing on his own, a big praise, we are unfortunately dealing with him having uncontrolled pain. He hasn't slept well in several days and has been unbelievably uncomfortable and often cries out in pain, even in the middle of his sleep. It's been excruciating watching him be in pain and not be able to do anything about it. We have been fighting with the doctors to achieve proper pain control. They have been very slow in upping the strength of the narcotics because they are afraid of slowing his respiratory system. But, we continue on and hope today is the day they figure out the perfect combination of pain meds.
Just continue to pray for healing for his little body. He just lays there, unsmiling, not moving, not talking. It's heartbreaking.
Just continue to pray for healing for his little body. He just lays there, unsmiling, not moving, not talking. It's heartbreaking.
Sunday, June 24, 2012
IMPROVEMENT...
Praise the Lord Isaiah has been taking continual small steps towards recovery! He is no longer critical, but guarded, meaning medically stable but still monitored closely in ICU. Even though he is still on the breathing tube and usually sedated, he has had periods of lucidity. He has been answering questions by nodding yes or no, following commands, and repositioning his "blue bear" to have it close by his side. He continues to have a lot of pain and the nurses have had to give him extra doses of pain medication to make him comfortable. Tomorrow they are planning to take his breathing tube out and hopefully his NG tube as well. We have been blessed with amazing and understanding nurses and other medical staff. It has made this situation much easier for us. They have been taking excellent care of Isaiah.
Josiah came down today with my brother David to visit us. It was too overwhelming for him to see Isaiah, but we said that was ok and it was very brave for him to come down to CHOP. Chris and I really enjoyed playing with Josiah, hugging him, tickling him, and having dinner with him. We really miss him and are grateful to Dave for bringing him down. Josiah said when Isaiah gets his breathing tube out, he will spend time visiting and talking to Isaiah. Also, our pastor from Calvary, Bill Tarr, came and prayed over Isaiah. One can never underestimate the power of God's people praying. We are thankful for godly leadership that take time for us.
Thank you for all the emails, texts, calls, etc. We have been encouraged by you. As for me, I am much more sore today, but surviving. Tomorrow, my mom will be coming up from TN to help us out. It'll be nice to have an extra set of hands.
Please pray for the following:
1. That we will be able to get into the Ronald McDonald House.
2. That Isaiah continues to improve.
3. That everything with the insurances work out for car repair and hospital coverage from my car accident.
4. That my soreness resolves quickly and that I don't have any residual negative effects from the accident.
Josiah came down today with my brother David to visit us. It was too overwhelming for him to see Isaiah, but we said that was ok and it was very brave for him to come down to CHOP. Chris and I really enjoyed playing with Josiah, hugging him, tickling him, and having dinner with him. We really miss him and are grateful to Dave for bringing him down. Josiah said when Isaiah gets his breathing tube out, he will spend time visiting and talking to Isaiah. Also, our pastor from Calvary, Bill Tarr, came and prayed over Isaiah. One can never underestimate the power of God's people praying. We are thankful for godly leadership that take time for us.
Thank you for all the emails, texts, calls, etc. We have been encouraged by you. As for me, I am much more sore today, but surviving. Tomorrow, my mom will be coming up from TN to help us out. It'll be nice to have an extra set of hands.
Please pray for the following:
1. That we will be able to get into the Ronald McDonald House.
2. That Isaiah continues to improve.
3. That everything with the insurances work out for car repair and hospital coverage from my car accident.
4. That my soreness resolves quickly and that I don't have any residual negative effects from the accident.
Saturday, June 23, 2012
EMERGENCY SURGERY...
Isaiah's x-ray at Lehigh Valley Hospital showed a blockage of some sort that required immediate intervention from CHOP doctors. They transported him to CHOP via ambulance. He received an NG tube to decompress his stomach and IV fluids. His NG tube was actually draining stool because his bowels were so backed up.
The CHOP team quickly surmised that Isaiah probably had a blockage due to adhesions from previous surgeries, and needed emergency surgery. He was in there for about 3 hours and they did find an adhesion that created a blockage in his small intestines. They had to remove approximately 30 cm of dead bowel. They gave him an ostomy (opening on the stomach for poop to come out) because they couldn't repair his intestines right away due to all the inflammation.
On the way down, I was rear ended on route 76 by a man who fell asleep at the wheel. Thankfully, I was able to drive my car the short distance to CHOP, but it may be totalled. My brother-in-law, Andre, came to the ER, since Chris couldn't get there right away to help me and support Isaiah. My back and neck really hurt and required being seen at HUP. I went there after Isaiah went into surgery. Chris walked me over, and then went back to be with Isaiah.
Now the bad news...Isaiah is in critical condition because his body went into shock during surgery because of the necrotic bowel, loss of blood and fluids, and infection. He is currently intubated (on a breathing tube), on dopamine to stabilize his blood pressure, and has received 1 unit of blood and 3 liters of fluid. He is needing a central IV line and an A-line for blood pressure maintenance, IV antibiotics, and other IV access. He will be here at least 2 weeks.
1) Please pray for Isaiah that his little body will recover and he will return to his normal mischievous self. He was playing yesterday in a pool. It's amazing how quickly life can change and take a turn for the worse.
2) Pray that the pain in my back, neck, and legs resolve quickly.
3) Pray for Josiah who has been moving from place to place and misses us all being home together. He really misses his little brother.
4) [CHRIS]: Pray that I can be the strength my family needs to get through this, and that I can get Joy's car taken care of this week so she is not stranded without a car. Pray that I am able to manage all this and still get my work done at my job.
Thank you all for being with us through this. We couldn't have come this far without all of you and your support. We would have drowned a long time ago if you had not interceded on our behalf before God.
The CHOP team quickly surmised that Isaiah probably had a blockage due to adhesions from previous surgeries, and needed emergency surgery. He was in there for about 3 hours and they did find an adhesion that created a blockage in his small intestines. They had to remove approximately 30 cm of dead bowel. They gave him an ostomy (opening on the stomach for poop to come out) because they couldn't repair his intestines right away due to all the inflammation.
On the way down, I was rear ended on route 76 by a man who fell asleep at the wheel. Thankfully, I was able to drive my car the short distance to CHOP, but it may be totalled. My brother-in-law, Andre, came to the ER, since Chris couldn't get there right away to help me and support Isaiah. My back and neck really hurt and required being seen at HUP. I went there after Isaiah went into surgery. Chris walked me over, and then went back to be with Isaiah.
Now the bad news...Isaiah is in critical condition because his body went into shock during surgery because of the necrotic bowel, loss of blood and fluids, and infection. He is currently intubated (on a breathing tube), on dopamine to stabilize his blood pressure, and has received 1 unit of blood and 3 liters of fluid. He is needing a central IV line and an A-line for blood pressure maintenance, IV antibiotics, and other IV access. He will be here at least 2 weeks.
1) Please pray for Isaiah that his little body will recover and he will return to his normal mischievous self. He was playing yesterday in a pool. It's amazing how quickly life can change and take a turn for the worse.
2) Pray that the pain in my back, neck, and legs resolve quickly.
3) Pray for Josiah who has been moving from place to place and misses us all being home together. He really misses his little brother.
4) [CHRIS]: Pray that I can be the strength my family needs to get through this, and that I can get Joy's car taken care of this week so she is not stranded without a car. Pray that I am able to manage all this and still get my work done at my job.
Thank you all for being with us through this. We couldn't have come this far without all of you and your support. We would have drowned a long time ago if you had not interceded on our behalf before God.
COMPLICATIONS...BACK TO CHOP
Isaiah was doing really well at Good Shepherd and was reaching his goals. However, he ran into complications with his bowels and ended up at Lehigh Valley Hospital for testing. He is being transferred to CHOP today for a bowel obstruction of some sort. He has an NG tube and IVs right now. He is in a lot of pain, and is quite nauseated. Please pray they find out what and where the blockage is and that it can be easily resolved with or without surgery. I don't know how long we will be at CHOP. Pray for wisdom for the doctors and safety for us as we travel back and forth.
Wednesday, June 13, 2012
FEEDING CLINIC--ONE WEEK DOWN...
Well, we have survived one week of Good Shepherd's feeding clinic. Thank you to those who prayed for us. Isaiah is doing well. He has charmed his way into the hearts of all the nurses, doctors, and therapists. All he has to do is smile at the staff, and he often gets his way. His first day there, he commandeered a tricycle, and has been riding it ever since all over the facility. He hasn't made any real progress yet with eating, but it takes time. The doctor has already cut down on Isaiah's tube feeds, and has required him to eat 3 meals a day with a therapist. They weigh Isaiah daily to make sure he doesn't loose too much weight.
Continue to pray for us. We are doing a lot of running back and forth between home, work, and Good Shepherd. It's exhausting. Also, it's hard being separated from one another. We have a minimum of at least 3 more weeks of this. Thank you to those who are helping out with staying with Isaiah or have been watching Josiah. We greatly appreciate it. We still are looking for people who are willing to stay with Isaiah during the day and/or overnight. We just don't like him being alone. If this is something you are interested in, please email us at isaiahsjourney@yahoo.com.
Continue to pray for us. We are doing a lot of running back and forth between home, work, and Good Shepherd. It's exhausting. Also, it's hard being separated from one another. We have a minimum of at least 3 more weeks of this. Thank you to those who are helping out with staying with Isaiah or have been watching Josiah. We greatly appreciate it. We still are looking for people who are willing to stay with Isaiah during the day and/or overnight. We just don't like him being alone. If this is something you are interested in, please email us at isaiahsjourney@yahoo.com.
Sunday, April 22, 2012
HOME FOR 2 WEEKS...
On April 6th, we came home from CHOP, just in time for Easter. Isaiah was not fully recovered at discharged, but definitely on the road. It took about another week for Isaiah's system to further adjust to his new tube feeds and to recover from C-diff. Every day, he gets a little bit stronger and attempts to take a few more bites of food. YEAH!!!!!
HUGE PRAISE!!! Talk about awesome--for the first time in 3 years we were able to really play with Isaiah, tackle him, tickle him, just really laugh hard together as a family without him throwing up, stopping because of pain, or stop because of retching. This was huge for us and finally a sign that this last surgery was definitely worth the pain and difficulties we experienced.
A tentative date for the feeding clinic has been set for May 21st. Isaiah will go to Good Shepherd, Bethlehem for approximately 4-8 weeks. It is an inpatient program, so he will be there full time, except for the CHOP visits down in Philadelphia. We are still asking for help to spend time up at Good Shepherd with Isaiah during the day and overnights. Chris and I need a little break from all the running. Plus, we need others to learn the feeding methods in order to help us help Isaiah. Please let us know if this is something you would be willing to do. You can contact us through our email at isaiahsjourney@yahoo.com.
Thank you again to all of you that have helped us out over the past 3 months. We couldn't have made it without your support, prayers, meals, letters of encouragement, and other gifts. Each of you play an integral part in this journey with Isaiah.
Please pray for the following:
1. Success at the feeding clinic for Isaiah.
2. That our insurance will help cover replacing the floors that have been ruined from the past 2 years of vomiting and leaking tube feeds.
3. For Josiah--he has been struggling recently with significant asthma flare ups, partly related to the carpeting issue. Pray for his health and also for his sensitive heart as he will be separated again from Isaiah for 4-8 weeks. Josiah didn't do well with being separated so often over these past 3 months.
HUGE PRAISE!!! Talk about awesome--for the first time in 3 years we were able to really play with Isaiah, tackle him, tickle him, just really laugh hard together as a family without him throwing up, stopping because of pain, or stop because of retching. This was huge for us and finally a sign that this last surgery was definitely worth the pain and difficulties we experienced.
A tentative date for the feeding clinic has been set for May 21st. Isaiah will go to Good Shepherd, Bethlehem for approximately 4-8 weeks. It is an inpatient program, so he will be there full time, except for the CHOP visits down in Philadelphia. We are still asking for help to spend time up at Good Shepherd with Isaiah during the day and overnights. Chris and I need a little break from all the running. Plus, we need others to learn the feeding methods in order to help us help Isaiah. Please let us know if this is something you would be willing to do. You can contact us through our email at isaiahsjourney@yahoo.com.
Thank you again to all of you that have helped us out over the past 3 months. We couldn't have made it without your support, prayers, meals, letters of encouragement, and other gifts. Each of you play an integral part in this journey with Isaiah.
Please pray for the following:
1. Success at the feeding clinic for Isaiah.
2. That our insurance will help cover replacing the floors that have been ruined from the past 2 years of vomiting and leaking tube feeds.
3. For Josiah--he has been struggling recently with significant asthma flare ups, partly related to the carpeting issue. Pray for his health and also for his sensitive heart as he will be separated again from Isaiah for 4-8 weeks. Josiah didn't do well with being separated so often over these past 3 months.
Thursday, April 5, 2012
MOVING FORWARD...
I know you are sitting on the edge of your seat, with bated breath, wondering what is going on with Isaiah. Well, we are finally moving in the right direction towards discharge. So far, Isaiah has been tolerating his new tube feeds without pain or retching. He still has periods of gas, but no where near the amount he did with the initial formula. He continues to take a few bites of his meals, but no more than 7 bites at a time. Unfortunately, he has yet to move his bowels without any assistance. He will get another x-ray of his abdomen today to make sure he is not backed up again with poop. If Isaiah tolerates his bolus tube feeds today with his overnight continuous feed at full strength/volume and his x-ray is ok, he may go home tomorrow.
Once he is stabilized and healthy, we will try to send him to Good Shepherd's feeding clinic in Bethlehem. He continues to have many issues with textures, a hyperactive gag reflex, and trouble with biting/chewing/swallowing foods. But, the clinic is still a ways off as of right now.
A new issue arose this admission. Pulmonary did a CT scan of his sinuses to see if there were any abnormalities due to the fact Isaiah has had many lung/sinus/ear infections since birth. What he found was that Isaiah's 3 sinus cavities (4th is still developing) were completely filled with mucous. The doctor doesn't know if this is an acute infection, that has not been affected by current antibiotics, or if this is related to a syndrome called Primary Ciliary Dyskinesia or PCD. You can look up PCD at http://www.med.unc.edu/pulmonary/areas-and-programs/pcd-research-treatment-at-unc. Isaiah will need to come back in the next couple of months to have biopsies taken from his lungs and nasal passages to confirm this diagnosis.
Things to pray for:
1. Continued healing for Isaiah
2. Continued strength and health for all of us.
3. Continued safety as we drive back and forth between CHOP, home, Josiah, work, etc.
4. That we can work out Isaiah's continued care with the state of PA for PT/OT/Speech/Behavioral therapists. Right now, since turning 3, the state wants to cut out all of Isaiah's therapies, except behavioral.
5. That I can return back to work soon--I've been out from work for the past 3 weeks.
We often get asked, "What can we do to help?" Here are some ideas:
1. First and foremost, PRAY!!!! Exhausted doesn't even begin to describe how we feel at this moment and we are totally depending on your strength and your personal relationship with God to carry us through.
2. Gas cards
3. Grocery cards
4. Meals
5. Babysitting
Once again, thank you to all who have been regularly upholding us up in prayer, or have been helping us out through meals, watching Josiah, and other gifts. We greatly appreciate it. God bless you as you have blessed us.
Have a wonderful Easter remembering the life, death, and resurrection of our wonderful Lord and Saviour, Jesus Christ.
Once he is stabilized and healthy, we will try to send him to Good Shepherd's feeding clinic in Bethlehem. He continues to have many issues with textures, a hyperactive gag reflex, and trouble with biting/chewing/swallowing foods. But, the clinic is still a ways off as of right now.
A new issue arose this admission. Pulmonary did a CT scan of his sinuses to see if there were any abnormalities due to the fact Isaiah has had many lung/sinus/ear infections since birth. What he found was that Isaiah's 3 sinus cavities (4th is still developing) were completely filled with mucous. The doctor doesn't know if this is an acute infection, that has not been affected by current antibiotics, or if this is related to a syndrome called Primary Ciliary Dyskinesia or PCD. You can look up PCD at http://www.med.unc.edu/pulmonary/areas-and-programs/pcd-research-treatment-at-unc. Isaiah will need to come back in the next couple of months to have biopsies taken from his lungs and nasal passages to confirm this diagnosis.
Things to pray for:
1. Continued healing for Isaiah
2. Continued strength and health for all of us.
3. Continued safety as we drive back and forth between CHOP, home, Josiah, work, etc.
4. That we can work out Isaiah's continued care with the state of PA for PT/OT/Speech/Behavioral therapists. Right now, since turning 3, the state wants to cut out all of Isaiah's therapies, except behavioral.
5. That I can return back to work soon--I've been out from work for the past 3 weeks.
We often get asked, "What can we do to help?" Here are some ideas:
1. First and foremost, PRAY!!!! Exhausted doesn't even begin to describe how we feel at this moment and we are totally depending on your strength and your personal relationship with God to carry us through.
2. Gas cards
3. Grocery cards
4. Meals
5. Babysitting
Once again, thank you to all who have been regularly upholding us up in prayer, or have been helping us out through meals, watching Josiah, and other gifts. We greatly appreciate it. God bless you as you have blessed us.
Have a wonderful Easter remembering the life, death, and resurrection of our wonderful Lord and Saviour, Jesus Christ.
Saturday, March 31, 2012
GOOD NEWS, BAD NEWS...
Good news... Isaiah has been tolerating a small amount of food by mouth since Wednesday and has been taking in tube feeds without complications. He's in great spirits, but is going stir crazy--I think we all are. The dietitian is doing daily calorie counts to see how much Isaiah is eating by mouth which in turn can lead to one less tube feed, YEAH!! He has been pain free for at least a week, with only intermittent bouts of gas pains.
Bad News... The doctors are saying ONE MORE WEEK, UGH!!!!! They have been very conservative in restarting Isaiah's feeds. They want to slowly restretch his stomach and to try to let his body acclimate to the feeds. He continues to need assistance in moving his bowels. Unfortunately, his bowels haven't normalized yet since the surgery. Also, he is on isolation precautions for Rhinovirus and C-diff. This means he can't go to the play room or down to the cafeteria. Pretty much, we are sequestered to his room.
If anyone is interested, we would greatly appreciate someone to come and sit with Isaiah during the day at CHOP from about 8am-7pm. This would allow me to stay home with Josiah (he's off this week for Easter) and allow Chris to go to work. This hospitalization has been incredibly difficult on all of us and this would give us a little reprieve. Please call Chris or me if this is something you would be able to do.
Thank you again for your continued prayers, emails, and words of encouragement.
Bad News... The doctors are saying ONE MORE WEEK, UGH!!!!! They have been very conservative in restarting Isaiah's feeds. They want to slowly restretch his stomach and to try to let his body acclimate to the feeds. He continues to need assistance in moving his bowels. Unfortunately, his bowels haven't normalized yet since the surgery. Also, he is on isolation precautions for Rhinovirus and C-diff. This means he can't go to the play room or down to the cafeteria. Pretty much, we are sequestered to his room.
If anyone is interested, we would greatly appreciate someone to come and sit with Isaiah during the day at CHOP from about 8am-7pm. This would allow me to stay home with Josiah (he's off this week for Easter) and allow Chris to go to work. This hospitalization has been incredibly difficult on all of us and this would give us a little reprieve. Please call Chris or me if this is something you would be able to do.
Thank you again for your continued prayers, emails, and words of encouragement.
Saturday, March 24, 2012
AT LEAST ANOTHER WEEK...
Isaiah is still at CHOP and probably will be there for at least another week. Progress has been moving very slowly. The Cat Scan of his stomach showed no problems with the surgical site. However, it did show that the colon loops abnormally up around and behind the stomach and is filled with a lot of gas (possibly from the new formula). The surgeon has one theory that maybe the gas is making the colon put pressure on the surgical area, which in turn is causing the stomach pain. He has one more scan on Monday to verify that the surgical sites are ok, and then we will move forward from there.
Since Isaiah has been on bowel rest, his pain and retching have decreased significantly, but he still needs to receive pain meds at least twice a day. Also, since not eating or drinking for almost a week, he now wants to eat. Thankfully, his surgeon has allowed him to eat/drink clears. It has been encouraging to know that Isaiah's hunger drive is still present. We have often wondered if he even experienced the sensation of hunger since being on tube feeds for over 2 years.
Here is the tentative medical plan for this week:
1. PICC line placed where Isaiah will receive IV nutrition and fats through it
2. Scan Monday
3. Start on clear foods through stomach tube if scan is clear
4. If tolerates clears through GT, will be advanced to a formula
Our biggest requests are:
1. No infection or sickness for Isaiah--with the PICC line he is at a much higher risk for an infection to get directly into his blood.
2. For safety for us --we are driving continually back and forth between CHOP, home, work, school, and my brother's home.
3. Grace for Josiah--he is continuing to have a hard time being separated from one or all of us.
4. For Isaiah--he is on isolation precautions and cannot leave his room to play. We are all getting a little stir crazy.
5. For Chris and me--In the last 2 months, we have seen little of each other or had time to rest, sit and talk. We have had little time in our own home to recoup and be a family. This is not ideal for a marriage, and we are often fighting against exhaustion, frustration and anger when we are together.
Thank you for your continued prayers and support. Thank you to those whom have come to sit with Isaiah all day to allow us to have a break away from the hospital.
Since Isaiah has been on bowel rest, his pain and retching have decreased significantly, but he still needs to receive pain meds at least twice a day. Also, since not eating or drinking for almost a week, he now wants to eat. Thankfully, his surgeon has allowed him to eat/drink clears. It has been encouraging to know that Isaiah's hunger drive is still present. We have often wondered if he even experienced the sensation of hunger since being on tube feeds for over 2 years.
Here is the tentative medical plan for this week:
1. PICC line placed where Isaiah will receive IV nutrition and fats through it
2. Scan Monday
3. Start on clear foods through stomach tube if scan is clear
4. If tolerates clears through GT, will be advanced to a formula
Our biggest requests are:
1. No infection or sickness for Isaiah--with the PICC line he is at a much higher risk for an infection to get directly into his blood.
2. For safety for us --we are driving continually back and forth between CHOP, home, work, school, and my brother's home.
3. Grace for Josiah--he is continuing to have a hard time being separated from one or all of us.
4. For Isaiah--he is on isolation precautions and cannot leave his room to play. We are all getting a little stir crazy.
5. For Chris and me--In the last 2 months, we have seen little of each other or had time to rest, sit and talk. We have had little time in our own home to recoup and be a family. This is not ideal for a marriage, and we are often fighting against exhaustion, frustration and anger when we are together.
Thank you for your continued prayers and support. Thank you to those whom have come to sit with Isaiah all day to allow us to have a break away from the hospital.
Tuesday, March 20, 2012
CRYING MY WAY TO THE HOSPITAL...
Isaiah is hospitalized again at CHOP for uncontrolled abdominal pain and trouble breathing. He went to the ER on Sunday, just to be sent home the same day with no resolution. Early Monday morning, Isaiah's nurse woke me up at 5:30am because he was writhing in pain even after 2 doses of pain meds. He was having trouble breathing. I could hear fluid in his lungs, and he had mild retractions with grunting. I was able to reach his surgeon via email and she had us bring him back down to CHOP to be admitted.
So far, no one knows why Isaiah is having uncontrolled abdominal pain. He continues to retch, has bile backing up into his tubing, and has not moved his bowels in 2 days. There may be a blockage, but we won't know til after his cat scan tomorrow (xrays have been negative). No 3 year old should have to endure this much pain. He just cries or retches or just sits around because playing/laughing causes too much pain. Watching him is pure torture and I wish I could take away his pain, so does Chris. This is why I cried my way to CHOP. Isaiah should be running and jumping and enjoying life, not spending his days in pain lying in a hospital bed.
Please pray for all of us. This particular surgery (partial Nissen) with hospitalizations have been incredibly hard on all of us. Josiah was crying the other day saying, "I'm scared." He is worried for Isaiah and often states, "I hope I get to see my brother again." No 5 year old should carry these types of worries. He should be allowed to play and laugh and wake up every day in his home with his family. Every time Isaiah is hospitalized, Josiah needs to go to someone else's house. His scheduled is disrupted and he is separated for days, sometimes weeks, from us.
Pray for a miracle that somehow, someway God will move and touch Isaiah's body and allow our family to be back together soon. Constant separation and constant stress is taking a toll on our marriage, our family, and on each of our spiritual relationships with God. Seeing His goodness in all of this is incredibly difficult. I don't understand the purpose for Isaiah's suffering--so in turn, I question God's sovereignty. I want to wholeheartedly tell my children about God's awesomeness and goodness, but I can't do that right now, and it's killing me.
So far, no one knows why Isaiah is having uncontrolled abdominal pain. He continues to retch, has bile backing up into his tubing, and has not moved his bowels in 2 days. There may be a blockage, but we won't know til after his cat scan tomorrow (xrays have been negative). No 3 year old should have to endure this much pain. He just cries or retches or just sits around because playing/laughing causes too much pain. Watching him is pure torture and I wish I could take away his pain, so does Chris. This is why I cried my way to CHOP. Isaiah should be running and jumping and enjoying life, not spending his days in pain lying in a hospital bed.
Please pray for all of us. This particular surgery (partial Nissen) with hospitalizations have been incredibly hard on all of us. Josiah was crying the other day saying, "I'm scared." He is worried for Isaiah and often states, "I hope I get to see my brother again." No 5 year old should carry these types of worries. He should be allowed to play and laugh and wake up every day in his home with his family. Every time Isaiah is hospitalized, Josiah needs to go to someone else's house. His scheduled is disrupted and he is separated for days, sometimes weeks, from us.
Pray for a miracle that somehow, someway God will move and touch Isaiah's body and allow our family to be back together soon. Constant separation and constant stress is taking a toll on our marriage, our family, and on each of our spiritual relationships with God. Seeing His goodness in all of this is incredibly difficult. I don't understand the purpose for Isaiah's suffering--so in turn, I question God's sovereignty. I want to wholeheartedly tell my children about God's awesomeness and goodness, but I can't do that right now, and it's killing me.
Sunday, March 18, 2012
NOT DOING WELL...
Since discharge from CHOP on Feb. 21st, Isaiah has been struggling with a significant amount of abdominal pain that is only partially controlled by pain medication. Even though the surgery has kept Isaiah from throwing up, it hasn't stopped the urge to vomit. Now, when Isaiah has stomach pain/discomfort, he just retches over and over again. It is painful for us to watch, but even more painful for him to go through. Plus, the retching aggravates the surgical site. We almost wish we could reverse the surgery to allow him to throw up again. At least then, he is only hurting our floors and not his stomach/surgical site.
Then, only a week after discharge, he became really sick. Since March 1st, Isaiah had been fighting a cold which then turned into pneumonia (complicated by asthma/allergies), double ear infections, and a sinus infection. Antibiotics and pain meds have been limited in their scope in helping him recover.
We are asking for you to pray specifically for healing in his little body. He is in alot of pain, having difficulty sleeping and breathing, and he is regularly retching. We don't know what else to do for him. We need God to intervene sooner than later and heal Isaiah.
Then, only a week after discharge, he became really sick. Since March 1st, Isaiah had been fighting a cold which then turned into pneumonia (complicated by asthma/allergies), double ear infections, and a sinus infection. Antibiotics and pain meds have been limited in their scope in helping him recover.
We are asking for you to pray specifically for healing in his little body. He is in alot of pain, having difficulty sleeping and breathing, and he is regularly retching. We don't know what else to do for him. We need God to intervene sooner than later and heal Isaiah.
Thursday, February 23, 2012
POOP HAPPENED...then we went home!
Things happened quite quickly after Isaiah was able to poo Sunday night and tolerate his feeds. We actually were able to come home Tuesday evening. Isaiah has been doing really well since the surgery. The first 4-5 days were really rough with Isaiah having to be medicated around the clock for pretty intense pain. Since then, his pain has been controlled with occasional Tylenol. He has had a few episodes of retching, but has not thrown up since the corrective surgery. We have been able to talk him down from his retching episodes and he has been able to get himself under control. So far, the results have been encouraging. Isaiah's usual response to pain or discomfort has been to vomit. Now that he can't, he has to learn a new way to cope with pain and work through it.
Isaiah's 3rd birthday was Monday, the 20th. Can't believe he is already 3. Seems like yesterday we were celebrating his 1st birthday with all of you. The staff at CHOP made a huge birthday sign for his door, ordered him an ice cream cake, gave him a present, and sang to him. It was a really fun day.
Josiah also celebrated his 5th birthday while we were down at CHOP on Feb. 15th. Time keeps on flying by!!!! What was really special was that the Ronald McDonald House put together a Batman birthday party for the boys on the evening Isaiah was discharged from the hospital. There were Batman banners, toys, plates/cups, gift bags, and so much more!!!! We even had one of our friends, Colleen, from a few visits back there with her son, KeVaughn. The boys also had the privilege of being sung to by a group of girls from Mount St. Joseph's school. Isaiah especially liked being the center of attention from all the girls!!! He's such a flirt!
Thank you for all your continued prayer and support. We still have a long road ahead of us, but so far, so good. Once Isaiah is cleared by surgery (next appointment March 15th), he is heading to an inpatient feeding clinic at Good Shepherd, Bethlehem. Isaiah will be staying at the clinic for 4-8 weeks for intense therapy to re-learn how to eat, swallow, process food. Please pray as we will be separated from Isaiah during that time. We will be able to visit and stay when we can, but we both work and can't stay full time. If any of you are willing, we are looking for people who would like to stay overnight with Isaiah the nights we cannot stay with him at Good Shepherd. We really don't want him to be alone. He has had to be alone alot lately. Thank you again for everything.
Isaiah's 3rd birthday was Monday, the 20th. Can't believe he is already 3. Seems like yesterday we were celebrating his 1st birthday with all of you. The staff at CHOP made a huge birthday sign for his door, ordered him an ice cream cake, gave him a present, and sang to him. It was a really fun day.
Josiah also celebrated his 5th birthday while we were down at CHOP on Feb. 15th. Time keeps on flying by!!!! What was really special was that the Ronald McDonald House put together a Batman birthday party for the boys on the evening Isaiah was discharged from the hospital. There were Batman banners, toys, plates/cups, gift bags, and so much more!!!! We even had one of our friends, Colleen, from a few visits back there with her son, KeVaughn. The boys also had the privilege of being sung to by a group of girls from Mount St. Joseph's school. Isaiah especially liked being the center of attention from all the girls!!! He's such a flirt!
Thank you for all your continued prayer and support. We still have a long road ahead of us, but so far, so good. Once Isaiah is cleared by surgery (next appointment March 15th), he is heading to an inpatient feeding clinic at Good Shepherd, Bethlehem. Isaiah will be staying at the clinic for 4-8 weeks for intense therapy to re-learn how to eat, swallow, process food. Please pray as we will be separated from Isaiah during that time. We will be able to visit and stay when we can, but we both work and can't stay full time. If any of you are willing, we are looking for people who would like to stay overnight with Isaiah the nights we cannot stay with him at Good Shepherd. We really don't want him to be alone. He has had to be alone alot lately. Thank you again for everything.
Thursday, February 16, 2012
POST-OP...
Day 1, Tuesday: In alot of pain, but we were able to take Isaiah down to CHOP's atrium in a wagon to play BINGO and to watch a ballet show by performers from the Philadelphia Dance Academy. He pretty much passed out as soon as we put him back to bed. He has very little endurance because of the pain. Pastor Connors and Pastor Grogan, from our church, came down in the evening to pray over Isaiah.
Day 2, Wednesday: Viviane, Chris's mom, spent the day at CHOP watching Isaiah. This allowed Chris to go to work and me to spend the day with Josiah celebrating his birthday--he turned 5!!! Can't believe it--time just keeps on flying by. I brought Josiah down to CHOP to spend a little time with Isaiah. He has really missed Isaiah. He has been praying daily, "Dear Jesus, please let me see Isaiah again. I really want to see him." It breaks my heart to see how much it affects them when they are separated. They are best buds. Chris then took Josiah home to have some daddy-time on his birthday. We keep trying to make things work even when life keeps handing us crap.
Day 3, Thursday: Still having an insane amount of pain and continues to be medicated around the clock. He could only tolerate being out of bed for 1 hour today. He did play a bit, which was a small improvement from the past 2 days. Uncle Dave Solt came for a quick visit and prayed over Isaiah. He started on Pedialyte today, but didn't tolerate it. Please pray that Isaiah's bowels start working, that he can tolerate the feeds, and poop. He would do so much better and feel so much better if he could poo.
As of right now, Isaiah will need to stay at CHOP until Tuesday/Wednesday. He is progressing so slowly that his doctors don't expect him to tolerate full feeds anytime soon. We are all exhausted and want to go home. Please pray for a miracle in Isaiah's body. One huge praise--we did get a room at the Ronald McDonald House in Philly--Thanks, Doug! This weekend, we will bring Josiah down to spend time with all of us. We are looking forward to being together.
Thank you to everyone who has been helping us out with watching Josiah, meals, praying for us, and for encouraging us. We really appreciate it!!
Day 2, Wednesday: Viviane, Chris's mom, spent the day at CHOP watching Isaiah. This allowed Chris to go to work and me to spend the day with Josiah celebrating his birthday--he turned 5!!! Can't believe it--time just keeps on flying by. I brought Josiah down to CHOP to spend a little time with Isaiah. He has really missed Isaiah. He has been praying daily, "Dear Jesus, please let me see Isaiah again. I really want to see him." It breaks my heart to see how much it affects them when they are separated. They are best buds. Chris then took Josiah home to have some daddy-time on his birthday. We keep trying to make things work even when life keeps handing us crap.
Day 3, Thursday: Still having an insane amount of pain and continues to be medicated around the clock. He could only tolerate being out of bed for 1 hour today. He did play a bit, which was a small improvement from the past 2 days. Uncle Dave Solt came for a quick visit and prayed over Isaiah. He started on Pedialyte today, but didn't tolerate it. Please pray that Isaiah's bowels start working, that he can tolerate the feeds, and poop. He would do so much better and feel so much better if he could poo.
As of right now, Isaiah will need to stay at CHOP until Tuesday/Wednesday. He is progressing so slowly that his doctors don't expect him to tolerate full feeds anytime soon. We are all exhausted and want to go home. Please pray for a miracle in Isaiah's body. One huge praise--we did get a room at the Ronald McDonald House in Philly--Thanks, Doug! This weekend, we will bring Josiah down to spend time with all of us. We are looking forward to being together.
Thank you to everyone who has been helping us out with watching Josiah, meals, praying for us, and for encouraging us. We really appreciate it!!
Monday, February 13, 2012
RECOVERING SLOWLY...
Isaiah is such a trooper. His surgeries took 4 1/2 hours, in the OR at 8:30am and out around 1pm. The procedure to fix his stomach took longer than expected due to a large amount of scar tissue from his prior surgeries. It took Dr. Collins over an hour to just release the liver, diaphragm, stomach, abdominal lining, etc. from all of the scarring. Overall, she felt the partial Nissen went well. After the stomach repair, Dr. Zur did the adenoidectomy and replaced his ear tubes. She was also very happy with the results. Thankfully, Isaiah remained stable during the different procedures.
Isaiah has had a lot of pain post-op, and has required both pain and anti-nausea meds around the clock. He is sleeping on and off. It's hard watching him struggle. We can't wait till he is back to his normal, happy self. Please continue to pray. He will be in CHOP for approximately 1 week. Dr. Collins doesn't want to rush the stomach and will slowly reintroduce food/liquids starting tomorrow. This will be a long and slow recovery.
Please continue to pass on our updates. We are unable to make a lot of phone calls right now. We will do our best to update daily. Thank you.
Isaiah has had a lot of pain post-op, and has required both pain and anti-nausea meds around the clock. He is sleeping on and off. It's hard watching him struggle. We can't wait till he is back to his normal, happy self. Please continue to pray. He will be in CHOP for approximately 1 week. Dr. Collins doesn't want to rush the stomach and will slowly reintroduce food/liquids starting tomorrow. This will be a long and slow recovery.
Please continue to pass on our updates. We are unable to make a lot of phone calls right now. We will do our best to update daily. Thank you.
SURGERY TODAY
We have an urgent request for prayer today! Isaiah is going in for a partial Nissen Fundoplication--the surgery we have been trying to avoid for the past 2 years because of its complications and failure percentages. However, at this point, we have no other options. This is our last option in trying to help Isaiah stop throwing up every day, to help prevent damage from his severe reflux. For 2 years, Isaiah has thrown up at least once a day. For the past 4-6 months, that has significantly increased to the point he has actually destroyed several of the floors in our home. He is uncomfortable and has become limited in the amount of activities he can participate in. Running, jumping, sneezing, laughing, coughing, standing, etc. can cause him to vomit. There is no rhyme or reason, and nothing non-surgical has been able to prevent this. It has been incredibly frustrating.
This abdominal surgery takes the top of the stomach and wraps it partially around the esophagus, tightening up the sphincter. The purpose is to make it more difficult to burp or vomit or to allow for reflux up the esophagus. Isaiah is also having adenoids removed, due to increased congestion/trouble breathing and his ear tubes replaced due to crusting.
Please pray specifically for:
1. That the surgery is successful and Isaiah will be free from discomfort, reflux, and vomiting.
2. Wisdom for Dr. Joy Collins (General Surgery), for Dr. Karen Zur (ENT), and for the anesthesiologist.
3. Isaiah CANNOT, under any circumstance, throw up post-op. Vomiting can destroy the surgical site and cause a whole new set of complications. He absolutely needs to rest and feel comfortable.
4. For our family--we will not all be together for 7 days. Pray that we will survive all the driving back and forth and separation.
5. Josiah turns 5 on Feb. 15th and Isaiah turns 3 on Feb. 20th. It's been hard for Chris and I knowing we can't be together as a family to celebrate on their birthdays.
I'll be honest--I am completely worried about Isaiah going under general anesthesia again and this complex surgery. I don't want it, nor does Chris. We just don't know what else to do. I don't have the capacity to trust God right now; so, I am asking for the faithful prayer warriors to intercede on my/our behalf. Thank you for praying.
This abdominal surgery takes the top of the stomach and wraps it partially around the esophagus, tightening up the sphincter. The purpose is to make it more difficult to burp or vomit or to allow for reflux up the esophagus. Isaiah is also having adenoids removed, due to increased congestion/trouble breathing and his ear tubes replaced due to crusting.
Please pray specifically for:
1. That the surgery is successful and Isaiah will be free from discomfort, reflux, and vomiting.
2. Wisdom for Dr. Joy Collins (General Surgery), for Dr. Karen Zur (ENT), and for the anesthesiologist.
3. Isaiah CANNOT, under any circumstance, throw up post-op. Vomiting can destroy the surgical site and cause a whole new set of complications. He absolutely needs to rest and feel comfortable.
4. For our family--we will not all be together for 7 days. Pray that we will survive all the driving back and forth and separation.
5. Josiah turns 5 on Feb. 15th and Isaiah turns 3 on Feb. 20th. It's been hard for Chris and I knowing we can't be together as a family to celebrate on their birthdays.
I'll be honest--I am completely worried about Isaiah going under general anesthesia again and this complex surgery. I don't want it, nor does Chris. We just don't know what else to do. I don't have the capacity to trust God right now; so, I am asking for the faithful prayer warriors to intercede on my/our behalf. Thank you for praying.
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