Gavin Christopher Owens
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< > August 2007
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Thu, Aug 30, 2007 8:49 PM
Gavin got his new line this evening and everything went well. He is just a mess at the moment as the breathing tube gave him a lot of irritation and he is just not coughing up the gook he needs to. Hopefully his pain meds will kick in and he can have a semi restful night.
Before we leave Gavin is in need of some blood. Thankfully our wonderful super Dr. R is going to let us leave after the transfusion even though it will not be until around 3am this morning. --I've got to get home and pack as we are leaving for the beach tomorrow. Ahhhhhh!
Please pray that we can find some rest this week. I'm finding it hard to find the concept of vacation in anything having to do with a child with a fresh central line wound, TPN, Dextrose, Meds and J feeds! I'm sure it's in there somewhere I just need to breath and find it.
Hopefully there will be no update until next week with lots of pictures and happy memories! Thanks you all for you encouraging words and also for those who choose to just keep it real --Adam and I enjoy both!Add a comment:
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Wed, Aug 29, 2007 11:59 PM
Could our life just be easy for one day? --apparently not. Today we spent the day at duPont working on Gavin's central line as it is still not working properly. We had made the decision to replaced the line, which was to take place tomorrow but then tragically Gavin's surgeon was killed this morning. After a long day at the hospital trying to figure out how we can get this line to last until the surgery can be rescheduled, I get home only to have his line completely occluded. Adam and I must have had 20 syringes of various shapes and sizes laying all over the living room floor, trying to get the darn thing to work but we had no such luck.
So off to the ER Gavin and I go. We were admitted and he is now an add on to the schedule with another surgeon. We are supposed to leave on vacation to the beach this week and we are praying that things can stay quiet enough for the surgery to happen and for him to be discharged tomorrow evening.
I'm not sure if any of that made sense as I'm completely exhausted. But I wanted to let everyone now what is going on.
Please keep Dr. W's family in your prayers as his death was completely unexpected.Comments:Lisa and Michael: WOW that's all unbelievable! Know you are all in our thoughts nad prayers. Take care- enjoy the beach!Mary Alice Carpenter: Wish I could be there to give all of you a hug!!! How sad to hear about Dr. W's death. Maybe God has taken him to heaven to be Gavin's angel. We will be praying that the new surgeon is aAngela Olsen: Hey Adam and Karen,
We are lifting you up through all of this! Please let me know where I can lift the burden if possible!the Seymours: Wow- thankfully God is continually working out HIS plan. We'll be praying for you all. As His grace flows through each of you- be encouraged.Fava Family: Constantly praying for Gavin's health to improve and for your family's continued strength. We are sorry to hear about Gavin's surgeon and will keep his family in our prayers as well. We pray that God is putting Gavin's health into the hands of this new surgeon for a reason that only He knows at this time. We hope that you we be able to enjoy some time down at the beach to help replenish your minds, bodies and spirits!JANE centrella: Hi Kids, We have the prayer teams praying as far away as Texas. Try to get some rest when he is resting. Love Gram CHannum's: Even in this, God has a purpose... we'll be praying that you make it to that vacation...I can't imagine anyone needing one more than you guys.Beaver Run: We continue to pray for your strength, your wisdom, and for your precious gift of Gavin! Our hearts ache for your struggles; take refuge in GOD, He will get you through everything.
GOD BLESS YOU!!Randy & Marilyn: Adam & Karen...Praying that the light at the end of this tunnel will soon shine brightly for you! So sorry to hear of your surgeons tragic death and will pray for his family and also that Gavins surgery will go well. Know we're all out here holding you up!!The Rich Family: We will continue to left all of you in prayer. Sad news about Dr. W. We will pray for a surgeon that God hand picks for Gavin. Enjoy the beach. God bless.Add a comment:
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Fri, Aug 24, 2007 4:44 PM
Shortly after writing my last update Gavin was admitted to the hotel la duPont once again. His line was still not working and thankfully after a another 4 hours TPA dwell we were able to save the line! Thanks for your prayers -- they are working!
We are looking forward to a very quiet week. To be honest I've talked more this week to Dr. R and other "friends" at duPont than I have with my own family! Gavin's docs are great but enough is enough. I would be thrilled to never speak to them again, only at McDonald's or somewhere normal.
Adam and I can never thank you enough. This journey is a lot easier knowing that we have a crowd behind us ready to push if we run out of gas.
KarenComments:Lisa and Michael: Just want you to know we are still praying for you- as are many other friends! All our love, Lisa, Michael, Josiah and baby Walk :o)debbie & jeff: Still believing, standing, and squeezing with you all! We love you and cannot wait to see the answers! Be blessed and encouraged- you guys are enduring well!Jess Panaccion: We will be praying for you guys extra hard this week!You guys are doing such a great job!Bruce & Terri: Hi Karen....I just spoke with Adam this morning and he told me of the low grade fevers. We will be praying for you and Gavin this morning and for the rest of the week...and the rest of your lives....love and hugs...P. Bruce and TerriJohn: Susan and I will be praying for Gavin and the whole Owens family. God has a plan and has everthing under contol. It is very well possibly that Gavin is at duPont for another reason than the obvious. God may be using Gavin to show God's love to the people at duPont. I am sure that Ally's family appreciates your friendship. :-)Fava Family: Hang in there Gavin and Owens family! We are strongly praying for all of you. We pray for Gavin to be completely healed and for continued strength for your family.Randy & Marilyn: Sorry to hear you had to take that trip again, thankful that you do have wonderful Doctors there, but understand when you say you'd rather just bump into them when you're out and about. Our prayers are with you. Gavin, press on buddy!! Love you guys!Jimmy DeWan: My prayers will be continuing for Gavin. Hope he's better really soon. Keep me updated.Mary Alice Carpenter: I hear the stay at hotel la duPont is a life experience but tell Gavin I think he is taking too many vacations!!!!! Just whisper in his ear...Add a comment:
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Thu, Aug 23, 2007 7:17 AM
Yesterday Gavin and I made a trip to duPont for clinic and some more work on his line. Clinic went ok. Dr. R is pretty disappointed about the feeds and the fact that Gavin has regressed dramatically since just a few months ago. We talked about the muscle biopsy that was performed a few months ago. This was a test looking for mitochondrial issues. The initial exam of the muscle, which was done at duPont came back insignificant, though this doesn't really tell us much other that his muscles look ok. The real test we are waiting for was sent to Atlanta where we have lost track of the sample-- go figure. Thankfully duPont still has a piece a frozen muscle that will be sent with us up to Colombia when we are ready to take that trip. Gavin's weight looks good - although slow he is making some progress. His height is slacking off a bit and this is something that is just as important as weight. We talked about Gavin's poor motility in his gut and the fact that it is just not moving. Dr. R switched some of his meds hoping that this will help.
As for his line... after the die study on his line where they injected some radioactive material into his line and watched it flow under fluoroscopy, we realized that he has a significant narrowing and block at the tip of the catheter. We were admitted into the hospital for some TPA (blood thinner) to let dwell in his line for 4 hours. Sadly after 4 hours the line was no better then before. Thankfully we were allowed to leave around 9pm and go home. So that leaves us with a very bad line and a child's life that is dependent on that line. Needless to say it needs to be fixed, hopefully without having to place a new line it.
With all that said this really is a "minor" issue. Please continue to pray for our friend Ally who is struggling after her transplant. Please pray that her parents can find some peace in their chaotic life. Adam and I know that feeling, like you are just stuck and it's not a feeling I'd wish on any family.
-KarenComments:Kirsten Yarnall: Hi Karen-
It was so great to get to talk with you a bit on Sunday. We continue to keep you guys in our prayers and will do so with this new development as well. I just checked Allys' site before checking yours and it is overwhelming to read about, let alone deal with as the parent. The Lord has such wonderful plans for these two children. I just can't wait to see what He does in their lives and to see them witness to others about the grace, mercy, and glory of God. Keep strong, continue prayers for healing and know that we are all on this journey with you. Praying in agreement with you and Adam for total and complete healing and restoration for Gavin and Ally.
Be Blessed,
KirstenAdd a comment:
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Mon, Aug 20, 2007 8:12 AM
Nothing new to report, that's a good thing! We made a trip to the duPont ER yesterday for some maintenance on Gavin's central line but it was just an in and out kinda thing. (well, 5 hours in, to be exact.)
Gavin continues to struggle greatly with his feeds. We have only been able to run his feed at 10cc per hour and that's if we are lucky. Gavin is no longer receiving lipids daily in hopes that this will help his liver numbers. He has a blood draw today we will see if this is helping.
He continues to be very pale and I'm concerned about his overall health. He has just been a little off and that has me worried he is trying to fight off something.
He is starting to be more active, which is causing a lot of problems both for him and me. He is getting so tangled in his tubes and wires I end up having to strap him in his bouncy seat.
To end on a positive note, he is gaining weight! For the longest time this was his main problem and it seems that the combo of the TPN infusion and the infant warmer is really making a difference! We are praying for a mild winter as the cold weather will a challenge for him.
Remember that no update is a good thing!Comments:Pastor and Liz: Wow, that is great news! We are looking forward to seeing Gavin in church. God is aMary Alice Carpenter: Glad to hear that Gavin is gaining weight. A Dr. once told me when the boys were small if they were pale to take them on a trip to Florida! I told him only if he wrote a prescription and paid for it. One day at a time, dwell on accomplishments. Prayers and God Bless you all.Bruce & Terri: YEH Gavin!! Glad to hear that all is coming along and yes, don't you love those 5 hour in and outs. We are praying for continued progress and God's strength through all this..Lots of Love and Hugs..P. Bruce and TerriMatthew and Amy: It was good to see you at church yesterday before you made your trip to Dupont. I'm glad that you came. Though Gavin may not have everything worked out with his feeds, its so good to see him keeping on the weight. We'll pray he keeps that up. Hopefully you will have a good week this week.Add a comment:
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Fri, Aug 10, 2007 5:41 PM
We are Home... Overall Gavin is doing well. He is still very swollen and has a lot of fluid that he needs to get rid of. Even after his transfusion his hemoglobin did not get as high as a would have liked and it started to drop again. The Doctor feels that Gavin may be translocating bacteria from his bowels and that is what caused the high fever and drastic drop in all his "numbers".
We know that we have many people praying for Gavin so we figured we get specific on what to pray for:
Decreased liver numbers
To tolerate feeds
Increased urine output
To stay infection free
Motility of his small bowel
To be pain free
Increase in Hemoglobin and Platelets
We are so glad to once again be home. Thanks for all your support over this past week. Your prayers are paying off. He continues to amaze the doctors in how well he tolerates his failing body. It is amazing to see him smiling with a fever of 106 or a blood sugar of 20!
Comments:Mary Alice Carpenter: Welcome home. It is so very hard to believe that Gavin still has that smiling adorable face. If anyone can teach us all what life is all about it sure is Gavin. If we would just take a lesson from him we will all be stronger people. God Bless you all....and smile because many prayers are being sent up to theMom and Dad: Hoping and praying the days ahead will be fever-free, and busy with changing lots of WET diapers!! Also, make sure you take some time for yourself. It's hard to take of a family when your running on empty. We love you so much. See ya next Sat.gram and pop c: So glad you are at home. He looks great aven with the pudge.We keep on praying for a miricle. love gram and pop cMatthew and Amy: YAY!!! We're so glad that you are at home sweet home again. We will definitely try to pray for your specifics. God is in the details. Hopefully we'll see you at church tomorrow.Randy & Marilyn Moses: Praise God! So glad you're back home. Enjoy your weekend and know we're praying!The Rich Family: Yea!!! There is no place like home. Hope Madi is still going strong w/ potty duties. We will pray for Gavins specifics an for you and your hubby. Have a great weekend Try to enjoy the nice weather.Fava Family: We are so happy that you guys were able to come home. We will continue to pray for Gavin's health to improve. Keep on smiling Gavin, you are an inspiration to us all!Add a comment:
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Thu, Aug 9, 2007 4:15 AM
Gavin's Fever Has Broke! Gavin has had no temperature all night long!! He did well after his transfusion, though he lost his IV during the last 20cc's. No Biggie. His platelets as also low but they are holding off on giving him any for now. Gavin was given Lasixs last night to help pull the fluid off his body -- It didn't work. Normally your input and output should equal in one way or the other. Yesterday Gavin took in 1600cc's of fluid and only put out 600cc's. So the question now is where did all that fluid go, especially if he no longer has a fever. A bunch of blood was taken today to see why Gavin got so sick. Hopefully Gavin will stay fever free and we can come home tomorrow!
Comments:Mark & KayAnn: Father, Thank you for not taking your hand off of Gavin's life. Thank you for answering all the prayers of each event that has placed Gavin in the hospital. We know you want to heal Gavin becasue your word says You heal all our deseases. Father, we will not stop asking for the complete healing and restoration of Gavin health. May you do for Gavin what no Dr. has been able to do for You are theMary Alice Carpenter: Thank you God for taking Gavin's fever away. Now please help the Dr's find our what is going on with his little body. Hope you get to go home tomorrow. Prayers....Prayers....Prayers being sent. God Bless you all.Jacob Fava: Baby Gavin, please feel better and heal from Jesus and as he feels better let him get big to feel stronger. Please get him video games. Thank you. Love, Jacob FavaFava Family: Thank you God for allowing Gavin's fever to break! Please continue to watch over him and heal him so that he and his family can go back home. Continue to bless Gavin and please give his family the added strength needed to care for him.Add a comment:
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Wed, Aug 8, 2007 3:19 PM
Gavin's time in the tropics is coming to an end! His fever has begun to come down and we are all taking a sigh of relief. He is once again retaining ALOT of fluid and is going to receive some meds to help with that today after his transfusion. Tomorrow we will be doing some more tests to check for some off the wall viruses. We are all glad to be able to give a semi decent update. Go Gavin! Pray for some massive wet diapers tonight so we can see our non-sumo Gavi again.
Comments:ava: Give me a P-(p) give me an E-(e) Give me and E- (e)....what's that spell PEE.... what's gavin going to do PEE!
I like it when my mommy cheers with me...so I thought I would cheer for you.
love AvaJacob Fava: Baby Gavin, please feel better and heal from Jesus and as he feels better let him get big to feel stronger. Please get him video games. Thank you. Love, Jacob FavaChris Cillo: Thank you so much for these updates! Every group of children that I work with always ask to pray for Gavin. They are praying so hard for him, and your family. It's great to be able to go to them with good news, or help them to know what specifically needs prayer (Of course praying for wet diapers will be something preschoolers in particular will absolutely love!). Although, Gavin isn't here with the children it's like he's their inspirational leader. We have an army of tiny prayer warriors praying for all of you!Add a comment:
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Tue, Aug 7, 2007 2:47 PM
Once again I really have nothing to update. Gavin's temps are getting higher and he is dependent on the Motrin to get any relief. All cultures are still negative. We are going to stop the antibiotic tomorrow and see if he gets any worse and to see if they can get anything to grow from a culture. We also are going to do some blood work for some addition virus' and also check his pancreas.
On top of all that his hemoglobin took a major hit and he will need to be transfused. Please pray that Gavin can find some relief from the fevers and that the doctors will figure out what his body is doing.
Our friend Ally is still fighting strong after her multi organ transplant. Please keep her and her family in your prayers as she has a long road ahead.Comments:Terri & Bruce: We're continuing to pray Karen. Also for your strength and frustration. We will pray for God's wisdom for the doctors and that they will be able to determine soon what is going on. Praying for Gavin's endurance. Also praying for God's peace that surpasses all undertsanding....May HE show Himself mightly in this situation....we love you guys and you are continually in our prayers....P Bruce and TerriRandy & Marilyn: Will be praying.. Hang in there. Know we're all here holding you up. Trusting those fevers to break in the Name of Jesus!Fava Family: Strongly praying that Gavin's body will be healed of his fevers and infections and that he will be able to go home. We will keep Ally and her family in our prayers as well.Add a comment:
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Mon, Aug 6, 2007 11:05 AM
Unfortunately We have nothing new to report. Gavin has been running a fever of 104+ all night and day and is finally getting some much needed rest. His cultures are still negative, which has been very frustrating because we don't know what to treat. Gavin has been having great difficulty with his feeds and some bacterial overgrowth in his small bowel. Thankfully the antibiotics give him some relief because "flushing" him out is a normal side effect of most antibiotics.
Madi and I had a good first day together alone. She got here at the hospital around 5:15 and was ready to start her day. I let her play in the bath tub for over an hour to keep her occupied while the rest of the hospital was sleeping. She took a good nap for me and is now spending the rest of the afternoon at the Child Life center here at the hospital. The staff knows her there and allow me to leave her in their care. Tomorrow Madi is going to spend to morning with her Nana at the RM house and give me a much needed break. Keep Adam in your prayers as he has to go to work and then come down to the hospital and take care of Madi at night.
Thanks for all your messages. They are a great encouragement to Adam and I.Comments:dawn: so glad you and Madie are having a good time...that is an answered prayer right in itself...we continue to hold you up. I hope to come and visit soon.Aunt Nancy and family: YOu as always are in our prayers. Please let us know if you would like us to come take Madi on aGrammy amd Pappy Owens: We have put Gavin on our church prayer chain. And also pray for continued strengh for you and Adam. Please know we would love to have Madi for a visit--it would help give you both a needed break. We're just a phone call away. All our loveBetsy Barz: We keep praying everyday for Gavin and also for you, adam, madi we always pray for healing but also that God will give you the strength you need each and every day....you both are an inspiration to everyone.Renata: My family and I are praying for Gavin and both of you!
God is GOD,and He is good!Keep trusting Him!
GOD bless you!Mary Alice Carpenter: Well kids you still amaze me with your strength. Adam remember all those super heros you read about in the comics! Well let me tell you buddy they have absolutely nothing on you! I know you are the best husband Karen could ask for and bestAdd a comment:
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Sun, Aug 5, 2007 2:11 PM
Not much new to report. Gavin's fevers are getting worse but nothing has grown yet on his blood cultures. That started him on an antifungal IV med as he has a history of having yeast in his central line, which also tends to take awhile to grow. The frustrating thing is that if he does has a fungus in his line he will need to go to the OR and have it removed and then replaced once he has a few negative cultures. To sum all that up -- we may be here while!
So far Madi is doing well. She is being a potty princess and is not regressing at all. Adam said that she slept great last night over at the RM House. Tomorrow will be the real test when I have her by myself, though her Nana is more than willing to come and play with her if I get to overwhelmed.
Hopefully I will have more info to share in my next update.
"Squeezing"
(you'll have to read my squeezing post from my mommie blog, the link is on Gavin's home page.)Comments:dawn: The kids at both services...The Glow service...prayed for Gavin too. I told them about all the specifics...fever...infections...lines and they prayed over them. I am believing for the prayers of the children!Pastor and LIz: Karen and Adam, you both continue to amaze us with you tenacity of spirit and faith. Until youdebbie: we will continue to pray. Personally I prefer water w/ lemon :)! Lemonade season is almost over anyway!!! At least the fragrance is refreshing while your squeezing, keep it up! :)Randy & Marilyn: Still Praying! You Go Madi! You Pottie Princes You! Have a good day! ~love you guys.Jimmy DeWan: I will continue to pray for Gavin. Sorry he's not doing good. Hope his fevers will go down. Keep me postedLandis family: We are praying for you! The kids prayed for Gavin at Jr. Glow during worship time this morning. It was so precious! God bless you - Rob, Stephanie, Taylor, and Cassidy LandisAdd a comment:
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Sat, Aug 4, 2007 3:05 PM
To Hotel duPont we go...
Yes that's right, Gavin was admitted to dupont this afternoon after being transferred from Pottstown. He has a high fever and most likely another line sepsis. We will just have to wait for the cultures to come back. Adam and Madison are staying down here with Gavi and I and will be sleeping at the RM House. Please pray for Madison to be able to transition back to hospital life without regressing (particularly with potty.)
Here we go again...Comments:Fava Family: Praying that Gavin will be healed of his infection and that you can all get back home soon.Randy & Marilyn: Hi! Owens'...we're praying for you. sorry to hear you're in the hospital yet again. Know you're in our thoughts and prayers. Love you guys!Bruce & Terri: OK Owen's family....we are praying...as are so many others...we love you guys and are praying for a quick exit from DUPONT....Blessings..P. Bruce and Terrirosalind: I hope little man gavin feel better and he go home we will pray for him and god bless you.The Rich Family: Sorry to here this set back. We will be praying I have Jr. Glow service so I'll have the kids rally in pray for you family.John & Susan: Susan and I will be praying for the entire Owens family. We know that God is in control of this and every situation. We also know that the Lord will give us peace in comfort in times of need.Ava: Gavin--- I am sorry you are back in the hospital. But I know they will take good care of you and get you home soon.
Dear Jesus, make my friend Gavin better. AmenMary Alice Carpenter: May God travel with all of you. Take deep breathes and pray for strength. You will all manage another trip. As for Madison hope she continues to be a big girl and find the potty.
Prayers for all continue.Add a comment:
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Thu, Aug 2, 2007 6:24 AM
Ah yes, the Owens family drama continues...
This week we took an unexpected trip down to duPont after Gavin's GJ decided to crack. Thankfully our day nurse was with us and was able to stay at the hospital with Madi, Gavin and I for most of the day. What makes this story even more typical of our family is that when we got to the hospital Gavin's blood sugar decided to drop to 32. As his mother I wasn't concerned because he has done this in the past and always brings it up with a little D10. Well the ER staff freaked out wanting to take him off of my IV and hook him up to something else at a faster rate and higher detrose. Well I was just very upset and let them know that we were here for his J tube and I'm perfectly capable of caring for his blood sugar problems. The Doc finally compromised and decided to check his sugar again later and we saw that it began to trend up and they could back down on the troops. It just a lot of senseless drama. I'm aware that it is a concern with Gavin but so is the rest of the Doc on his team and they still sent him home with Adam and I.
Yesterday I spoke with Gavin's primary Dr. R. and he let me know that Gavin's liver numbers are significantly elevated even from last weeks blood draw. The TPN is killing his liver. We have to find a way to get him to be able to tolerate his feeds. We played with some if his meds this week so we will just have to wait and see how Gavin's body reacts.
We are still is need of night shift nursing. Either an RN(preferable) or an LPN would work. We are in need of Sunday through Wednesday 11pm-5am If you know of anyone or you yourself would be interested please contact:
Harleysville Pediatric Home Care
215-513-7455
Ask for Eileen as she is Gavin's Case Manager.
Please continue to pray for the Heintz Family. Ally is doing well after transplant but has a long road ahead. Jill and Shane also have another little girl Ashley who is 4. Pray that Ashley will find comfort during this crazy time as well!
Thanks As Always!Comments:Mary Alice Carpenter: Karen I am so proud of your composure and stamina to handle these crisis'. You certainly have become an expert but most of all a wonderful nurse and mother. Prayers for all of you and little Ally's family continue. Two steps forward one back....remember you are still making progress!Gram C: Karen ,You are doing afantastic job. Good for you to be able to stand up againest the Er staff . That is tough because they can be tough and think they have the answers. I know I've been there. If you make enough trips ther they will finally realize you have things under control(I hope). Prayers for you all. GramAunt Pat: Karen and Adam, you and Gavin and Maddie are in our prayers daily, and even more than daily. We will also pray for Ally and her family. I am so amazed at your strength and love you all so much. If Maddie wants to come and play we would love to have her. I'm sure all the doggies miss her as we do! They especially like to sit under the table while she eats lunch! I pray Gavin will soon start to tolerate his feedings and for strength to continue for you and a peace that God is faithful. Love, Aunt PatAdd a comment:
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