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.
Subscribe to:
Posts (Atom)
