Mom went with an American who was here for 4 weeks yesterday so today we decided we would all go out so I could see what it is like. What an experience! As we are walking down the road everyone is staring at us. I mean EVERYONE! We had Dillon and JayDonn both with us and we are the ONLY white people that we saw. Beijing is an international city and has some people from all nationalities. But apparently Shijiazhuang is not. Ok, so there is this tiny little gate you have to go through to get to the market and since there is no way the wheelchair will fit we had to go through a food court. Everything was going fine, we had to lift the wheelchair up the couple of steps but nothing to too bad. We went out and looked at some clothes and bought bananas, a peach, and these little brown balls on twigs that we don’t know what they are but were told they are good. So then we went back into the food court to leave and guess what…. they locked the doors! We had no way to get out. So a nice Chinese lady could tell we didn’t know what to do and pointed for us to go back out side and go around the other way. We did this, only to find the same small gate on the other side. So we were trying to ask police men how to get out. They didn’t understand that we wouldn’t fit with the wheelchair. That lady came out and found us again and showed us where to cut through another building so we could get outside the gate. She was very kind to take her time to walk us all the way out since we clearly were not going to find it on our own! So then as we are walking back we are very aware that everyone stops and watches us, they even follow us a little to watch what we are doing. I stopped to suction Dillon and I glance up to see a man with his camera phone pointed at us! I have never had people stop and take my picture like that before! I have never felt so out of place before! I have never had that many people stare at me! I mean, in the States we get people who stare at us because of Dillon but not the whole population at once! But of course, everyone loved Jay and stopped to talk to him.
That was an experience that I don’t think I will soon forget! It was scary to be trapped and not be able to understand a word of what people were saying to us! Scary to not have a way to tell them what we needed. Next time we will be sure to take the little translator with us!
Friday, July 31, 2009
Thursday, July 30, 2009
SUMMARY DAY ONE FROM TIFFANY!
Our first full day in China was good. We were all very tired, though. The nurses are all so sweet! They took 5 vials of blood from Dillon and a urine sample and a stool sample. The doctors also had a stomach ultrasound done, and while that was going on there was a lady to do an EKG, and while that was going on there were people to take a chest X-ray. They are looking at the brain MRI we had done right before we left the States and reading about what happened with Dillon’s birth so they will know what they want to do. They had the director of therapy in talking to us and she said they may do accupuncture to help him be able to swallow. Sometimes the needles are in the head, sometimes it is right in the throat so they will have to see how Dillon handles the needles. I told them I would like them to try whatever they can do help Dillon as we have tried everything we can in the US for therapy so what ever they can try would be worth it. They should be telling me today what their plans are for injections and therapy (I think!).
Jay was very fussy yesterday, but if he felt like Mom and I did - no wonder. He is sleeping good now. He went down around 11pm and is still sleeping at 7am so that is good! He has missed SO much sleep - and so have we. Dillon had a rough night last night. He was up so much coughing and coughing. Mom did most of his care for me so that was really sweet. Everyone, except Jay, is in the same room so it is hard to sleep when Dillon is beeping and coughing.
Mom K got to go with an American to the market. She said it was culture shock. She really saw that we are in China when she left the hospital and went out. There are really no other white people and no one speaks English and everyone looks at you because there are so few white people in this city. The prices are good though. She got 4 bananas, 2 apples, 1 peach, 6 eggs, and a small loaf of bread for about $2.05. We ordered food from place in the hospital and it was a little over $3.00 but it fed all three of us. Broccoli with garlic sauce and fried rice. Everything is cooked in some sort of grease, it tastes great, but is hard on the stomach so we want to try to figure out what is best for us to eat.
This American man was a real blessing to us. I believe God was in this - because he leaves today but he was here long enough to be a huge help to us. Our medical machines were not working when we plugged them in. This man showed us how to know what could be plugged in and what couldn’t. My pulse oximeter should be able to be plugged in, but since we did it without flipping the switch it stopped working. He was able to open up the part in the back and look at the fuse. He said we blew a fuse by not flipping the switch and he gave someone from the hospital the fuse and had them go out and get a new one. I have no idea how they were able to find this type of fuse, but they did and now all of our machines are working and we don’t even need adapters! Praise the Lord.
Today will be another exciting day. I am hoping we will find out the plan of action and that I can go out with Dillon so that we can all go to the market and have a look around. One thing that is interesting is McDonald’s and KFC deliver. Now we are little too far so we would have to pay their taxi fee if they came to us, but I thought my sister would find that interesting! There is a Pizza Hut too, but I was told that is a nice restaurant…a place a couple would go to for a nice dinner out together. Oh well, I still can’t wait to try some Pizza Hut in China! I will try to update every night so you know what happened that day. (Don’t forget my night is your morning…)
Tiffany
Jay was very fussy yesterday, but if he felt like Mom and I did - no wonder. He is sleeping good now. He went down around 11pm and is still sleeping at 7am so that is good! He has missed SO much sleep - and so have we. Dillon had a rough night last night. He was up so much coughing and coughing. Mom did most of his care for me so that was really sweet. Everyone, except Jay, is in the same room so it is hard to sleep when Dillon is beeping and coughing.
Mom K got to go with an American to the market. She said it was culture shock. She really saw that we are in China when she left the hospital and went out. There are really no other white people and no one speaks English and everyone looks at you because there are so few white people in this city. The prices are good though. She got 4 bananas, 2 apples, 1 peach, 6 eggs, and a small loaf of bread for about $2.05. We ordered food from place in the hospital and it was a little over $3.00 but it fed all three of us. Broccoli with garlic sauce and fried rice. Everything is cooked in some sort of grease, it tastes great, but is hard on the stomach so we want to try to figure out what is best for us to eat.
This American man was a real blessing to us. I believe God was in this - because he leaves today but he was here long enough to be a huge help to us. Our medical machines were not working when we plugged them in. This man showed us how to know what could be plugged in and what couldn’t. My pulse oximeter should be able to be plugged in, but since we did it without flipping the switch it stopped working. He was able to open up the part in the back and look at the fuse. He said we blew a fuse by not flipping the switch and he gave someone from the hospital the fuse and had them go out and get a new one. I have no idea how they were able to find this type of fuse, but they did and now all of our machines are working and we don’t even need adapters! Praise the Lord.
Today will be another exciting day. I am hoping we will find out the plan of action and that I can go out with Dillon so that we can all go to the market and have a look around. One thing that is interesting is McDonald’s and KFC deliver. Now we are little too far so we would have to pay their taxi fee if they came to us, but I thought my sister would find that interesting! There is a Pizza Hut too, but I was told that is a nice restaurant…a place a couple would go to for a nice dinner out together. Oh well, I still can’t wait to try some Pizza Hut in China! I will try to update every night so you know what happened that day. (Don’t forget my night is your morning…)
Tiffany
DILLON'S TREATMENT UNDERWAY!
As you are reading this, the sun is probably setting or already set, however, in China they will be just starting Friday morning! China is 12 hours ahead of us. On Thursday, Dillon had the bloodwork and cultures done, also he had a stomache ultra sound, EKG, and chest Xray. The doctors are going to try some treatments to see if there is a way to help Dillon swallow! This alone would be an answer to prayer.
When I spoke to her earlier she looked good but tired, understandably! They were put into a small VIP room, which actually has two rooms, this gives Jay more room to play. Dillon, looked good as I saw him on through the computer, he was resting comfortably in grandma's arms.
They met a wonderful man from New Jersey, who was able to take Donna to the market and show her around and how things worked. This man was a great blessing because he also was able to help with their electrical problems. The pulse ox machine was not working, and the man figured out a fuse was blown, he asked someone to run out and get a new one. This was accomplished.
I was asked to convey, much thanks for the prayers, and continuation of prayers! I will try to update you as often as I can. Please continue to post your comments I believe she can see them, if not I will be sending them to her! Thanks
~Valerie for Tiffany~
When I spoke to her earlier she looked good but tired, understandably! They were put into a small VIP room, which actually has two rooms, this gives Jay more room to play. Dillon, looked good as I saw him on through the computer, he was resting comfortably in grandma's arms.
They met a wonderful man from New Jersey, who was able to take Donna to the market and show her around and how things worked. This man was a great blessing because he also was able to help with their electrical problems. The pulse ox machine was not working, and the man figured out a fuse was blown, he asked someone to run out and get a new one. This was accomplished.
I was asked to convey, much thanks for the prayers, and continuation of prayers! I will try to update you as often as I can. Please continue to post your comments I believe she can see them, if not I will be sending them to her! Thanks
~Valerie for Tiffany~
Wednesday, July 29, 2009
ARRIVED SAFELY!!
Just wanted to update everyone that Tiffany, Dillon, JayDonn and Donna (grandma Kuenzi)made it to China safely. They are very tired JayDonn only slept 2.5 hours on the plane!!! There were no problems with the flight and everyone was very nice to them.
Our world travellers are VERY tired and trying to adjust to the Chinese time already! The do need to buy adapters for all there electrical equipment including Dillons machines and plan to do so today.
The doctors will start looking at Dillon today with blood, urine and stool cultures! I am writing on behalf of Tiffany (this is her mom, Valerie) and letting her know all the notes people are sending.
On behalf of the Kuenzi's and their families, we would like to send our condolences to Robin, Dillon's nurse, on the passing of her grandson's father! Our prayers are with you!
Our world travellers are VERY tired and trying to adjust to the Chinese time already! The do need to buy adapters for all there electrical equipment including Dillons machines and plan to do so today.
The doctors will start looking at Dillon today with blood, urine and stool cultures! I am writing on behalf of Tiffany (this is her mom, Valerie) and letting her know all the notes people are sending.
On behalf of the Kuenzi's and their families, we would like to send our condolences to Robin, Dillon's nurse, on the passing of her grandson's father! Our prayers are with you!
Saturday, July 25, 2009
Update / Specific Prayer Requests
Continental has finally given the verbal ok for the suction machine but I was waiting all week for them to email it to me in writing and they never did. However Janyce has told me on the phone several times that we are good for flying with it now that we have the FAA approved sticker on it.
On Tuesday, there was one company that was able to get me the batteries that I needed for the concentrator Aviation Mobility. Tim Merritt was so kind and gave me a good price on it. It was more than I had planned for though since we now needed extra batteries. It came to 2875 for 13 batteries, the concentrator for the 5 weeks, plus the finger pulse oximeter. THAT night the Utah Ski Resort was bought and the people gave me 3,000 for it! Isn't God good? Just when I think that I am going to have to put this on credit - He provides for it!
The finger pulse oximeter they were going to send me is a different brand than Continental approved, but it runs off of the AAA battery. Continental won't allow it. Aviation Mobility had to change and get me the one that Continental approved of even though they both work off of 2 AAA batteries.
We got the concentrator, the batteries, and the finger pulse oximeter yesterday via UPS, FedEx and the Postal service! Praise the Lord they came yesterday as they weren't scheduled until today. Our church is having a special 25th Anniversary service today and I was praying they would arrive in time so I could go and they did!
Now Specific Prayer Requests that I would ask you to bring before the Lord as often as you think of us. Hebrews 4:13 says "Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." Will you please go boldly before the throne of grace for us as we get ready to depart for this trip? God clearly wants us to go to China, as it has been such a miracle to raise about $34,000 in just six months! But I don't know what all his purpose is, what his plans for us includes....
1. Please pray that we will be able to board the plane without any problems since Continental has now approved all our machines.
2. Please pray that all of Dillon's machines will function properly on the plane and for the duration of the trip.
3. Please pray that we will not put into quarantine. (If anyone on our plane is sick we stand a chance at this, even though none of us are sick.)
4. Please pray that treatments would go well, that Dillon would not get an infection and that they would know which therapies are best to do with him. And of course, that these treatments will help Dillon to make improvements!
5. Please pray for health - especially for Dillon. We were able to get traveler's insurance on Mom K, JayDonn and me, but not Dillon since he is going for medical treatments. It is so important that he stays healthy or treatments will have to stop and we would have to pay any medical bills up front.
6. Please pray for the souls we will be meeting and giving the stories out to. Please pray they would be receptive to God's word. God does NOT promise me healing for my son. But God DOES promise that His word will not return void. He also promises that he is able to do exceeding abundantly above all that we ask or think....so ask and think BIG and watch God out do us! Please pray for wisdom and protection for us in handing out the stories, we do not want to do anything that is not permitted (just handing it out is not permitted, but if someone asks for it we can give it out.)
7. Please pray for Mom K and I as we are leaving our husbands for a whole month. We all know this is for Dillon, but it still is very hard! I have never been away from Josiah for even 24 hours since we were married! I will even be missing our 4th anniversary on Aug 20. Please pray for strength and peace for all of us. The boys will be away from their Daddy, but thankfully we will be able to see them on skype (webcam). If you have a skype account you can add us just search for Tiffany Kuenzi and you will find us.
Thank you for praying, we will keep you updated. I am hoping to update every night as to the events of the day. Thank you to everyone who has been praying, please keep praying! God has something wonderful in store with this, I just don't know what it is!
THANK YOU TO EVERYONE WHO HAS HELPED MAKE THIS POSSIBLE. I can't believe how many people are so generous and loving to help my little Dillon have this opportunity. Thank you doesn't say enough....
On Tuesday, there was one company that was able to get me the batteries that I needed for the concentrator Aviation Mobility. Tim Merritt was so kind and gave me a good price on it. It was more than I had planned for though since we now needed extra batteries. It came to 2875 for 13 batteries, the concentrator for the 5 weeks, plus the finger pulse oximeter. THAT night the Utah Ski Resort was bought and the people gave me 3,000 for it! Isn't God good? Just when I think that I am going to have to put this on credit - He provides for it!
The finger pulse oximeter they were going to send me is a different brand than Continental approved, but it runs off of the AAA battery. Continental won't allow it. Aviation Mobility had to change and get me the one that Continental approved of even though they both work off of 2 AAA batteries.
We got the concentrator, the batteries, and the finger pulse oximeter yesterday via UPS, FedEx and the Postal service! Praise the Lord they came yesterday as they weren't scheduled until today. Our church is having a special 25th Anniversary service today and I was praying they would arrive in time so I could go and they did!
Now Specific Prayer Requests that I would ask you to bring before the Lord as often as you think of us. Hebrews 4:13 says "Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." Will you please go boldly before the throne of grace for us as we get ready to depart for this trip? God clearly wants us to go to China, as it has been such a miracle to raise about $34,000 in just six months! But I don't know what all his purpose is, what his plans for us includes....
1. Please pray that we will be able to board the plane without any problems since Continental has now approved all our machines.
2. Please pray that all of Dillon's machines will function properly on the plane and for the duration of the trip.
3. Please pray that we will not put into quarantine. (If anyone on our plane is sick we stand a chance at this, even though none of us are sick.)
4. Please pray that treatments would go well, that Dillon would not get an infection and that they would know which therapies are best to do with him. And of course, that these treatments will help Dillon to make improvements!
5. Please pray for health - especially for Dillon. We were able to get traveler's insurance on Mom K, JayDonn and me, but not Dillon since he is going for medical treatments. It is so important that he stays healthy or treatments will have to stop and we would have to pay any medical bills up front.
6. Please pray for the souls we will be meeting and giving the stories out to. Please pray they would be receptive to God's word. God does NOT promise me healing for my son. But God DOES promise that His word will not return void. He also promises that he is able to do exceeding abundantly above all that we ask or think....so ask and think BIG and watch God out do us! Please pray for wisdom and protection for us in handing out the stories, we do not want to do anything that is not permitted (just handing it out is not permitted, but if someone asks for it we can give it out.)
7. Please pray for Mom K and I as we are leaving our husbands for a whole month. We all know this is for Dillon, but it still is very hard! I have never been away from Josiah for even 24 hours since we were married! I will even be missing our 4th anniversary on Aug 20. Please pray for strength and peace for all of us. The boys will be away from their Daddy, but thankfully we will be able to see them on skype (webcam). If you have a skype account you can add us just search for Tiffany Kuenzi and you will find us.
Thank you for praying, we will keep you updated. I am hoping to update every night as to the events of the day. Thank you to everyone who has been praying, please keep praying! God has something wonderful in store with this, I just don't know what it is!
THANK YOU TO EVERYONE WHO HAS HELPED MAKE THIS POSSIBLE. I can't believe how many people are so generous and loving to help my little Dillon have this opportunity. Thank you doesn't say enough....
Saturday, July 18, 2009
Light at the end of the tunnel?
There might be some light at the end of the tunnel now...
Continental had in writing from the manufacturer that I have a sticker stating the suciton machine is FAA approved. It took them over 48 hours for their "safety engineers" to tell me a verbal ok for flying now. They still will not put it in writing, but I don't see how else they can refuse me now that I have the sticker on it saying FAA approved.
So we should be able to fly with them after all....but oh wait they don't want my pulse oximeter either even though they told me on the phone it was ok. So I have to get a finger one that I explained runs off of a AA or AAA or watch battery - but is not something that ever plugs in or recharges. So nothing to worry about right? Wrong, they wanted the make, model and battery info on it. So their are two possible ones I could get. One runs on 2 AAA batteries, one runs off of a 3.6V lithum watch battery. They don't want me to use the one with the watch battery. I asked "Does this mean you don't allow anyone on board to have a watch on?" Seriously! If Dillon can't have a medically necessary piece of equipment just because it runs off a watch battery than I sure hope they wouldn't allow anyone else to have for non-medical reasons. But you and I both know they don't stop you from wearing your watch on board - they just make life as difficult as possible for a disabled person. So GoSouthernMD.com - read more about them below - is making sure they get me the one with the AAA batteries.
So I still need 15 batteries for the oxygen concentrator to be able to fly with Continental since they informed they don't do on board oxygen. I had one man who promised me he would get me all the batteries so I wasn't worried about it. I called him back yesterday and he said oops I can only get you two. TWO? I need 15! So I started making calls - begging companies to let me rent just the batteries so I could rent from several places and get all that I need. Most wouldn't even let me do this. Well I called GoSouthernMD.com and they promised me they would get them for me. They are emailing everyone they can asking them for help to make this possible for Dillon. You see, every other company all but laughed at me when I told them I needed 15. They cost about 350 each and they don't last very long until they won't recharge anymore so most companies only have a few. GoSouthernMD.com is the only one who said they would make this happen for me. I can't express I gratitude to them enough. It is going to be a lot of work for them to get them for me, but they said they will. I did not plan to have to rent 15 batteries so I am not sure how much it will come to, but some how God will provide! Please pray these kind people will be able to get all the batteries we need in time for our flight in 10 days.
The ONE positive thing with Continental is this... She told me that the flight from IAD to EWR is with a different carrier. I didn't know this because I don't fly much and didn't see it on my tickets. Janyce said if they don't allow my equipment they would have me fly out of a different Washington DC airport with one of their flights. I explained how EWR is closer to my home and that we were only going to DC and having the lay over becuase it was cheaper. I asked if we could just board in EWR so it will be MUCH easier on me and on their ground crew. She told me it is a "pretty for sure thing" that they will let us board in EWR which means we would have a direct flight to Beijing. It would only be a little over 13 hours, and no lay over to drag 75 pounds of batteries around an airport. So I am praying they will come through with this and let us board in EWR.
There is light at the end of the tunnel. I don't have in writing from them yet that they will allow me to fly with my FAA approved machines, but I am planning that they will. I am not sure why God allowed all this. I am not sure why things worked out so we need the 15 batteries - but I am thankful for the wonderful people at GoSouthernMD.com for helping! If they didn't help I would have to book different tickets - even after all we have done to get to this point with Continental. I am not sure what God's plans are, but He is still working, He is still providing. And while I still don't have anything in writing - I am trusting God that it will all come together just in the nick of time!
Continental had in writing from the manufacturer that I have a sticker stating the suciton machine is FAA approved. It took them over 48 hours for their "safety engineers" to tell me a verbal ok for flying now. They still will not put it in writing, but I don't see how else they can refuse me now that I have the sticker on it saying FAA approved.
So we should be able to fly with them after all....but oh wait they don't want my pulse oximeter either even though they told me on the phone it was ok. So I have to get a finger one that I explained runs off of a AA or AAA or watch battery - but is not something that ever plugs in or recharges. So nothing to worry about right? Wrong, they wanted the make, model and battery info on it. So their are two possible ones I could get. One runs on 2 AAA batteries, one runs off of a 3.6V lithum watch battery. They don't want me to use the one with the watch battery. I asked "Does this mean you don't allow anyone on board to have a watch on?" Seriously! If Dillon can't have a medically necessary piece of equipment just because it runs off a watch battery than I sure hope they wouldn't allow anyone else to have for non-medical reasons. But you and I both know they don't stop you from wearing your watch on board - they just make life as difficult as possible for a disabled person. So GoSouthernMD.com - read more about them below - is making sure they get me the one with the AAA batteries.
So I still need 15 batteries for the oxygen concentrator to be able to fly with Continental since they informed they don't do on board oxygen. I had one man who promised me he would get me all the batteries so I wasn't worried about it. I called him back yesterday and he said oops I can only get you two. TWO? I need 15! So I started making calls - begging companies to let me rent just the batteries so I could rent from several places and get all that I need. Most wouldn't even let me do this. Well I called GoSouthernMD.com and they promised me they would get them for me. They are emailing everyone they can asking them for help to make this possible for Dillon. You see, every other company all but laughed at me when I told them I needed 15. They cost about 350 each and they don't last very long until they won't recharge anymore so most companies only have a few. GoSouthernMD.com is the only one who said they would make this happen for me. I can't express I gratitude to them enough. It is going to be a lot of work for them to get them for me, but they said they will. I did not plan to have to rent 15 batteries so I am not sure how much it will come to, but some how God will provide! Please pray these kind people will be able to get all the batteries we need in time for our flight in 10 days.
The ONE positive thing with Continental is this... She told me that the flight from IAD to EWR is with a different carrier. I didn't know this because I don't fly much and didn't see it on my tickets. Janyce said if they don't allow my equipment they would have me fly out of a different Washington DC airport with one of their flights. I explained how EWR is closer to my home and that we were only going to DC and having the lay over becuase it was cheaper. I asked if we could just board in EWR so it will be MUCH easier on me and on their ground crew. She told me it is a "pretty for sure thing" that they will let us board in EWR which means we would have a direct flight to Beijing. It would only be a little over 13 hours, and no lay over to drag 75 pounds of batteries around an airport. So I am praying they will come through with this and let us board in EWR.
There is light at the end of the tunnel. I don't have in writing from them yet that they will allow me to fly with my FAA approved machines, but I am planning that they will. I am not sure why God allowed all this. I am not sure why things worked out so we need the 15 batteries - but I am thankful for the wonderful people at GoSouthernMD.com for helping! If they didn't help I would have to book different tickets - even after all we have done to get to this point with Continental. I am not sure what God's plans are, but He is still working, He is still providing. And while I still don't have anything in writing - I am trusting God that it will all come together just in the nick of time!
Tuesday, July 14, 2009
Continental Update
Continental still will not allow the suction machine. We are still working on it though. We even tried to make our own suction machine today, and it worked but not enough that we would be able to depend on it. :-)
The FAA has a test called RTCA/DO160D that if a portable medical device passes this test it is allowed on aircraft. I have provided this in writing from the FAA to Continental as well as the documentation that says the suction machine has passed this test. Now, the FAA rules say that ventilators, CPAP, oxygen concentrators and, respirators should have a label on them - but as long as the manufacturer has had the machine tested and it passed the FAA encourages airlines to allow it on even without the label. If you know anything about these machines you will know that the suction machine is none of these listed four. Any other medical device does not need the label according to the FAA. So it seems they are in violation by requiring it.
Continental is insisting that the suction machine has a label. I have been working with The Aviation Consumer Protection Department and they have their lawyers working with the FAA about our case in specific. So today I called DeVILLBISS - the manufacturer of the suction machine. They are totally amazed that Continental is requiring this. But they know what label I am talking about and are sending me the label tomorrow with a letter stating it is FAA approved. They are also contacting Continental for me with the approval letters.
PLEASE PRAY Continental will accept this. They said this is the only thing they need, so please please please pray we can fly with them since it is cheaper. We would need to carry the 75 lbs of batteries, but at least it would save us $2,000. I want this nightmare to be over so bad!
It is so scary to be taking my medically fragile son on a 13 hour flight to the other side of the world, I haven't even had time to pack or get excited because I have been under so much stress from trying to deal with Continental. I am so tired of them telling me they don't believe me, that I should have "known" what they do and don't do with on board oxygen, I am tired of being told I should have found the answers on the website myself instead of calling and talking to their employees, of having an executive director tell me he won't give me his word that he will try to get this worked out so future costumers with disabilities won't have to deal with this.
I just want to be able to fly on the cheapest airline dispite the fact that Dillon has medical needs. The reason I have been spending so much energy to fight Continental is becuase YOU ALL have paid our tickets and it would be so unfair of me to ask you to help me raise $2,000 more without doing everything I possibly can. I know many of you have sacrificed in your donations, kids have even given me their money from their piggy banks to help Dillon get to China. I can't in good faith abuse your generosity especially in these hard economic times. Please pray this works out, if not I am not sure we will have a choice but to go with United and spend the $2,000. United people seem to be much more poliet, but it is still the extra money that could be spent on giving Dillon the injections directly into the brain instead of on airline tickets!
I don't know why God has allowed this to happen, but if this all gets worked out it will be all to the Glory of God. The devil is doing everything he can to discourage us, to worry us, to cause stress. But God is in control of even this and I am sure He has a purpose - even if I don't know what exactly it is right now.
The FAA has a test called RTCA/DO160D that if a portable medical device passes this test it is allowed on aircraft. I have provided this in writing from the FAA to Continental as well as the documentation that says the suction machine has passed this test. Now, the FAA rules say that ventilators, CPAP, oxygen concentrators and, respirators should have a label on them - but as long as the manufacturer has had the machine tested and it passed the FAA encourages airlines to allow it on even without the label. If you know anything about these machines you will know that the suction machine is none of these listed four. Any other medical device does not need the label according to the FAA. So it seems they are in violation by requiring it.
Continental is insisting that the suction machine has a label. I have been working with The Aviation Consumer Protection Department and they have their lawyers working with the FAA about our case in specific. So today I called DeVILLBISS - the manufacturer of the suction machine. They are totally amazed that Continental is requiring this. But they know what label I am talking about and are sending me the label tomorrow with a letter stating it is FAA approved. They are also contacting Continental for me with the approval letters.
PLEASE PRAY Continental will accept this. They said this is the only thing they need, so please please please pray we can fly with them since it is cheaper. We would need to carry the 75 lbs of batteries, but at least it would save us $2,000. I want this nightmare to be over so bad!
It is so scary to be taking my medically fragile son on a 13 hour flight to the other side of the world, I haven't even had time to pack or get excited because I have been under so much stress from trying to deal with Continental. I am so tired of them telling me they don't believe me, that I should have "known" what they do and don't do with on board oxygen, I am tired of being told I should have found the answers on the website myself instead of calling and talking to their employees, of having an executive director tell me he won't give me his word that he will try to get this worked out so future costumers with disabilities won't have to deal with this.
I just want to be able to fly on the cheapest airline dispite the fact that Dillon has medical needs. The reason I have been spending so much energy to fight Continental is becuase YOU ALL have paid our tickets and it would be so unfair of me to ask you to help me raise $2,000 more without doing everything I possibly can. I know many of you have sacrificed in your donations, kids have even given me their money from their piggy banks to help Dillon get to China. I can't in good faith abuse your generosity especially in these hard economic times. Please pray this works out, if not I am not sure we will have a choice but to go with United and spend the $2,000. United people seem to be much more poliet, but it is still the extra money that could be spent on giving Dillon the injections directly into the brain instead of on airline tickets!
I don't know why God has allowed this to happen, but if this all gets worked out it will be all to the Glory of God. The devil is doing everything he can to discourage us, to worry us, to cause stress. But God is in control of even this and I am sure He has a purpose - even if I don't know what exactly it is right now.
...PRAY!
Thursday, July 09, 2009
Continental problems
There are some problems with our air fare. I need you to pray that this will all work out, that God will give us wisdom in what decision to make and that I will have the right words when talking with the airline people.
After I talked with Continental Airlines I don't even know how many times, and was assured by their "oxygen desk" that we could do on board oxygen for a fee of 100 per plane we booked the tickets to China. Then - AFTER BOOKING - I called them back and guess what - the people on the oxygen desk failed to check to see if they could do on board oxygen to China...they can't. So here are our options...
1. Book with another air line - Northwest is the next best but instead of tickets being 900 each they will be about 1700 each! Plus have more stops and longer layovers.
2. Take 15 batteries for the oxygen concentrator - each battery weighs 5 pounds! I found one company who will actually get this many batteries for me and every other company told me no. This means that instead of my oxygen concentrator costing me $750 it is going to cost me $1,265 and Mom and I will have to lug 75 pounds of batteries around in the airport on top of all Dillon's other equipment.
However, the catch is that the people on the oxygen desk are telling me I am not allowed to use Dillon's oxygen monitor (even though they didn't know what this machine was until I explained it to them). That I cannot even turn it on on the plane. I have been on 4 different planes with this before and never had a problem. I even have a letter from the manufacturer saying it is safe for flying. If I can't I am planning to get a handheld one as backup to at least do spot checks with.
Then they told me I can't use my suction machine! I can NOT fly with them if I can't use my suction machine on a 13 hour flight. I have to be able to clear his airway! I mean seriously - could a little suction pump really produce electrowaves? Maybe, but highly unlikely and I have used it on 4 planes with no problems. I do have a letter from that manufacturer as well stating it is safe - so we'll see what they say.
The manager asked me "You really have to use it while your on the plane?!" Clearly she has NO clue what a DISABLED child's life is really like. There is NO way Dillon can go 13 hours with out being suctioned. I told her I also have a battery operated nebulizer I need to have with me and she asked me "Doesn't he has an inhaler he can use instead?" I had to explain that "No - my son does not have the mental or physical capability to use an inhaler it has to be a nebulizer." She replied "Oh my son has one so I just wondered." Why would a person on the OXYGEN DESK not be capable of understanding that if I am flying with a three year old with SEVERE disabilities I would not be taking things that I don't need to take and that he does not compare to flying with your healthy child?
She then said to me "I just wish you would have given us more time." (Apparently their 48 hour required notice must not please her since I am giving them 20 days notice and that isn't enough!) So I politely as I could informed her that if her people on the oxygen desk knew what they were doing she would have had a whole week more. And that I am fund raising this money and I didn't have it any sooner. I explained that Dillon needs these treatments so I am also not wanting to wait here for extra weeks with the money and not going.
I really am so frustrated with Continental that if I can get permission to use my equipment I will fly with them this time...but I don't want to ever fly with this air line again. If we ever go back to China for more treatments I will plan to raise extra to be able to fly with Northwest - a company that seems to have a much more cooperative attitude in dealing with a child with severe disabilities. Northwest was even going to let me plug my machines in if needed while flying - they told me I could bring an extension cord if I needed to make sure we could use a power source. In the future, and for anyone else traveling with a disabled child/person, I would so far recommend Northwest BY FAR above Continental I just don't have the extra $3,500+ to do it this time.
Please just pray for me, I have to make sure I keep my attitude right even though their actions and comments (several other things have happened with them that I have not even put in here) have not been the nicest let alone professional. I am trying to get this worked out so that we can go the cheapest way possible. I know Satan is working hard to get me discouraged and worried. I am trying to remember that God is capable of working all these things out, and how much more it will be to HIS GLORY when all the details do get worked out despite Satan's attempts to sabotage our trip.
So....Keep praying!
After I talked with Continental Airlines I don't even know how many times, and was assured by their "oxygen desk" that we could do on board oxygen for a fee of 100 per plane we booked the tickets to China. Then - AFTER BOOKING - I called them back and guess what - the people on the oxygen desk failed to check to see if they could do on board oxygen to China...they can't. So here are our options...
1. Book with another air line - Northwest is the next best but instead of tickets being 900 each they will be about 1700 each! Plus have more stops and longer layovers.
2. Take 15 batteries for the oxygen concentrator - each battery weighs 5 pounds! I found one company who will actually get this many batteries for me and every other company told me no. This means that instead of my oxygen concentrator costing me $750 it is going to cost me $1,265 and Mom and I will have to lug 75 pounds of batteries around in the airport on top of all Dillon's other equipment.
However, the catch is that the people on the oxygen desk are telling me I am not allowed to use Dillon's oxygen monitor (even though they didn't know what this machine was until I explained it to them). That I cannot even turn it on on the plane. I have been on 4 different planes with this before and never had a problem. I even have a letter from the manufacturer saying it is safe for flying. If I can't I am planning to get a handheld one as backup to at least do spot checks with.
Then they told me I can't use my suction machine! I can NOT fly with them if I can't use my suction machine on a 13 hour flight. I have to be able to clear his airway! I mean seriously - could a little suction pump really produce electrowaves? Maybe, but highly unlikely and I have used it on 4 planes with no problems. I do have a letter from that manufacturer as well stating it is safe - so we'll see what they say.
The manager asked me "You really have to use it while your on the plane?!" Clearly she has NO clue what a DISABLED child's life is really like. There is NO way Dillon can go 13 hours with out being suctioned. I told her I also have a battery operated nebulizer I need to have with me and she asked me "Doesn't he has an inhaler he can use instead?" I had to explain that "No - my son does not have the mental or physical capability to use an inhaler it has to be a nebulizer." She replied "Oh my son has one so I just wondered." Why would a person on the OXYGEN DESK not be capable of understanding that if I am flying with a three year old with SEVERE disabilities I would not be taking things that I don't need to take and that he does not compare to flying with your healthy child?
She then said to me "I just wish you would have given us more time." (Apparently their 48 hour required notice must not please her since I am giving them 20 days notice and that isn't enough!) So I politely as I could informed her that if her people on the oxygen desk knew what they were doing she would have had a whole week more. And that I am fund raising this money and I didn't have it any sooner. I explained that Dillon needs these treatments so I am also not wanting to wait here for extra weeks with the money and not going.
I really am so frustrated with Continental that if I can get permission to use my equipment I will fly with them this time...but I don't want to ever fly with this air line again. If we ever go back to China for more treatments I will plan to raise extra to be able to fly with Northwest - a company that seems to have a much more cooperative attitude in dealing with a child with severe disabilities. Northwest was even going to let me plug my machines in if needed while flying - they told me I could bring an extension cord if I needed to make sure we could use a power source. In the future, and for anyone else traveling with a disabled child/person, I would so far recommend Northwest BY FAR above Continental I just don't have the extra $3,500+ to do it this time.
Please just pray for me, I have to make sure I keep my attitude right even though their actions and comments (several other things have happened with them that I have not even put in here) have not been the nicest let alone professional. I am trying to get this worked out so that we can go the cheapest way possible. I know Satan is working hard to get me discouraged and worried. I am trying to remember that God is capable of working all these things out, and how much more it will be to HIS GLORY when all the details do get worked out despite Satan's attempts to sabotage our trip.
So....Keep praying!
Monday, July 06, 2009
Pictures of where we are going!
Hello Everyone!
Sorry for two posts in one day...but these were pictures just recently sent to me of the place we will be going to and I thought you all would like the visual as much as I did!
Common Kitchen where Mom K and I plan to do most of our cooking to save money on food. The Chinese food is cheap - but they said some people don't like it so we will see!
Dining area
Bed room - we will have one bed for Dillon. One bed for Mom or I and a couch that some people sleep on. Or one of us can try to sleep beside Dillon in his bed - highly unlikely but we will see what works for us. Plus they are putting a crib in for JayDonn. They said it will be a tight fit in the room - even though they upgraded us to a "VIP" room ...but it is worth it to not have to leave my Jay behind for 31 days!
Common Bathroom...hey I had to share a common bathroom in college and sometimes at the Ronal McDonald house so oh well.
Sorry for two posts in one day...but these were pictures just recently sent to me of the place we will be going to and I thought you all would like the visual as much as I did!
Main Entrance
Physical Therapy area
Common Kitchen where Mom K and I plan to do most of our cooking to save money on food. The Chinese food is cheap - but they said some people don't like it so we will see!
Dining area
Bed room - we will have one bed for Dillon. One bed for Mom or I and a couch that some people sleep on. Or one of us can try to sleep beside Dillon in his bed - highly unlikely but we will see what works for us. Plus they are putting a crib in for JayDonn. They said it will be a tight fit in the room - even though they upgraded us to a "VIP" room ...but it is worth it to not have to leave my Jay behind for 31 days!
Common Bathroom...hey I had to share a common bathroom in college and sometimes at the Ronal McDonald house so oh well.
Hope you enjoyed the pictures - of course once we get there we will be posting a lot more pictures.
Stem Cells videos!
These are videos of other people who have had this treatment....watch them all and you will see WHY we are doing what we are about to do for Dillon!! Just click on the links below (if the don't work copy and paste them in):
http://www.youtube.com/watch?v=WXNnLleE2Kc&feature=fvw A little girl sees for the first time in her life
http://www.youtube.com/watch?v=L-Rj_rvBLZ0&NR=1 A man sees his family for the first time after being blind for 22 years!
These two are of a little girl named Dakota:
http://www.youtube.com/watch?v=FcP5rpTOKTw&feature=related
http://www.youtube.com/watch?v=xyyCRCNsAIg
http://www.youtube.com/watch?v=ITRAchU2C0I&feature=related This 6 year old looked at her Mom and said "I can see my Mommy!"
http://www.youtube.com/watch?v=TYS3_qSTvso&feature=related little boy with CP
http://www.youtube.com/watch?v=zKVsWodUCuM&feature=channel_page little baby girl with CP
So if you are still wondering why we are trying this - I promise if you watch these videos you will at least understand why we are doing this!
I have been thinking about this. When you are pregnant you look forward for nine months to see your baby, to see your baby look at you, to hear your baby cry, to see the first smile and giggle, to see their personality, to see the first roll over, the first time they sit up, to see the first crawl, the first step. I feel like I'm still pregnant....I'm still waiting. I have been waiting for all these things with Dillon for three years plus the nine months. I am praying this trip will allow me to have one of these "first" with Dillon. To have him look at an object like Dakota, or to improve enough to be able to be mobile, or to look at my face and know that I am his Mommy, or something!
We are getting very very close, we are continuing to go head with the plans for leaving July 28th. We don't have all the funds yet, but if God brought this much in so far He isn't going to leave us hanging. This means we leave in 22 days! I am getting nervous, but I keep reminding myself of the song lyrics, "The Will of God won't lead you where the Grace of God can't keep you!" and I KNOW God is leading us to China....
http://www.youtube.com/watch?v=WXNnLleE2Kc&feature=fvw A little girl sees for the first time in her life
http://www.youtube.com/watch?v=L-Rj_rvBLZ0&NR=1 A man sees his family for the first time after being blind for 22 years!
These two are of a little girl named Dakota:
http://www.youtube.com/watch?v=FcP5rpTOKTw&feature=related
http://www.youtube.com/watch?v=xyyCRCNsAIg
http://www.youtube.com/watch?v=ITRAchU2C0I&feature=related This 6 year old looked at her Mom and said "I can see my Mommy!"
http://www.youtube.com/watch?v=TYS3_qSTvso&feature=related little boy with CP
http://www.youtube.com/watch?v=zKVsWodUCuM&feature=channel_page little baby girl with CP
So if you are still wondering why we are trying this - I promise if you watch these videos you will at least understand why we are doing this!
I have been thinking about this. When you are pregnant you look forward for nine months to see your baby, to see your baby look at you, to hear your baby cry, to see the first smile and giggle, to see their personality, to see the first roll over, the first time they sit up, to see the first crawl, the first step. I feel like I'm still pregnant....I'm still waiting. I have been waiting for all these things with Dillon for three years plus the nine months. I am praying this trip will allow me to have one of these "first" with Dillon. To have him look at an object like Dakota, or to improve enough to be able to be mobile, or to look at my face and know that I am his Mommy, or something!
We are getting very very close, we are continuing to go head with the plans for leaving July 28th. We don't have all the funds yet, but if God brought this much in so far He isn't going to leave us hanging. This means we leave in 22 days! I am getting nervous, but I keep reminding myself of the song lyrics, "The Will of God won't lead you where the Grace of God can't keep you!" and I KNOW God is leading us to China....
Thursday, July 02, 2009
All to the Glory of God!
Well today is a day I don't think I will ever forget. We went to the bank this morning and wired the remaining amount for the treatments to China! Praise the Lord! Who would have ever thought that $26,300 would be donated so we could do these treatments! Especially in just a few months! THANK YOU TO EVERYONE WHO HAS HELPED MAKE THIS POSSIBLE!
We are not completely done yet, though. We still need the plane tickets, the on-board oxygen, oxygen concentrator, traveler's insurance, visas, etc. So we still need to raise about 5,000 more. A friend helped us find tickets tonight. (we don't have enough to book them yet though) Leaving from Newark NY and DIRECT flight into Beijing! Only a 13 hour flight! And for only $972 (plus bags). Thank you Dave!
Now are some decisions we have to make soon. I just found out that JayDonn is allowed to go with us. I thought this is great! It will be a lot more work, but I was thrilled. I thought his plane ticket would be free since he is under three. But tonight, when looking for tickets, I found out since is is not under 2 we will have to pay for him. His ticket is 800 plus his visa is about 200 and his travelser's insurance is about 140 totalling 1,140+.
We aren't going to use the money raised for Dillon for this since it isn't necessary for Dillon. But I really think it would be so much better for JayDonn than leaving him behind and having him wonder where Mommy and Dillon went for so long. Plus he would either be bounced from person to person which he doesn't really know to be watched while Daddy is working, or he would have to go to Ohio to be with my parents and be away from Daddy too. (My mom is having surgery and will not be able to travel here to stay with him. I know she would if she could and I appreciate that so much but it just isn't possible. But she is able to watch him there in Ohio)
When Jay went to be with family for 3 days he was so mad at me and wouldn't talk to me on skype or the phone. He took about an hour to hug me when he came back since he was mad at me for leaving him.
I guess, though, if I can trust God to bring in $31,000 for Dillon's sake - I can trust Him to help Josiah and I afford to take Jay with me if that is what is best for him. Is any one noticing that I am constantly asking for prayer to have faith and be able to trust God? You would think after all I have seen Him do that I would be able to trust Him for these "small" things....but I still need you to pray for me to have the ability to trust God to work it all out. Will you pray for me, please?
We are not completely done yet, though. We still need the plane tickets, the on-board oxygen, oxygen concentrator, traveler's insurance, visas, etc. So we still need to raise about 5,000 more. A friend helped us find tickets tonight. (we don't have enough to book them yet though) Leaving from Newark NY and DIRECT flight into Beijing! Only a 13 hour flight! And for only $972 (plus bags). Thank you Dave!
Now are some decisions we have to make soon. I just found out that JayDonn is allowed to go with us. I thought this is great! It will be a lot more work, but I was thrilled. I thought his plane ticket would be free since he is under three. But tonight, when looking for tickets, I found out since is is not under 2 we will have to pay for him. His ticket is 800 plus his visa is about 200 and his travelser's insurance is about 140 totalling 1,140+.
We aren't going to use the money raised for Dillon for this since it isn't necessary for Dillon. But I really think it would be so much better for JayDonn than leaving him behind and having him wonder where Mommy and Dillon went for so long. Plus he would either be bounced from person to person which he doesn't really know to be watched while Daddy is working, or he would have to go to Ohio to be with my parents and be away from Daddy too. (My mom is having surgery and will not be able to travel here to stay with him. I know she would if she could and I appreciate that so much but it just isn't possible. But she is able to watch him there in Ohio)
When Jay went to be with family for 3 days he was so mad at me and wouldn't talk to me on skype or the phone. He took about an hour to hug me when he came back since he was mad at me for leaving him.
I guess, though, if I can trust God to bring in $31,000 for Dillon's sake - I can trust Him to help Josiah and I afford to take Jay with me if that is what is best for him. Is any one noticing that I am constantly asking for prayer to have faith and be able to trust God? You would think after all I have seen Him do that I would be able to trust Him for these "small" things....but I still need you to pray for me to have the ability to trust God to work it all out. Will you pray for me, please?
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