Isaiah was admitted again to CHOP yesterday (1/16/13). In the morning he woke up with severe stomach pain and retching. Joy was able to take him down to the hospital for x-rays and evaluation, and I stayed at home with Josiah. It turned out there was no blockage, and we are still waiting for some lab work to come back to see if anything else is going on. Since being in the hospital, Isaiah has developed a high fever, his bowls have stopped moving, and he is not able to keep anything down. They are currently just keeping him hydrated through IV fluids and trying to keep the fever down.
Josiah and I got to speak to him last night and he seemed in pretty good spirits even with belly pain still lingering. Please continue to pray for him and for us with this latest trip to the hospital. Isaiah was in the hospital right before Christmas for 3 days due to similar symptoms, but it turned out to be the flu that affected his bowels on top of having croup. Josiah also had croup with the flu, and Joy had the flu on top of bronchitis. Needless to say, it was not a great Christmas, but at least we were all home together. Somehow I didn't get sick so I was able to manage the household while everyone else rested.
One thing new we learned during these recent hospital visits, is that we have to be extra careful with Isaiah and what sicknesses he is exposed to. Certain viruses/bacterias can cause his bowels to stop working (ileus) which then could lead to a blockage of the bowels. Because Isaiah often appears healthy, many forget he is medically fragile with a delayed immune response to illnesses. He cannot fight off viral/bacterial infections like "normal-functioning" children. Please remember this when you or your children are going to be around him. It could be a matter of life or death for him. Please help us protect Isaiah and if we are going to be getting together with some of you, please let us know if anyone may be sick or not feeling well.
Thank you for your prayers and help,
Chris
Thursday, January 17, 2013
Friday, October 19, 2012
THANK YOU GOD AND THANK YOU HONDA...
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!
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!
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.
Subscribe to:
Posts (Atom)
