Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Kayden Michael Kayden's Guestbook        Photo Album KAYDEN'S BIRTH STORY Current Page Page One UPDATE: 11-17-09 Hello all!!! kayden is doing well. He is getting so big.Well kayden went 14 months with no episode but a little over a month ago had one. We pray that these go away for good or will stay away longer and longer. We have done well keeping kayden from getting all the nasty flu that is going around. For halloween kayden was a huge lego. I made it big enough to go over him and his wheelchair with a matchig hat. He was so cute and was able to stay warm under.Braden was scream,and Jaiden was a transformer. The weather here the last week has been so nice. I wish winter would stay this way. After all we did not have much of a summer. I was able to take kayden out for a walk yesterday and he loved it. Frank kaydens dad had the H1N1 a few weeks back and also got pneumonia because of this. It was all we could do to keep them away from eachother and I think I used 2 cans of lysol.Thank God he did not get this as it was so hard on Frank. If kayden had this it would be so bad. Braden and Jaiden both felt sick for a couple of days but nothing to bad.kayden only had a small cold through this all. We thank God for our 3 wonderfull little boys. Kayden is doing well with at home PT,OT,Speech, and Braden and Jaiden are doing great in school.Time slips away so fast I wish i could slow it down a bit. Braden is now 11 years old and in 5th grade. Kayden is 8 and Jaiden is 6 and a big firstgrader. Please kepp kayden and all of us in prayer that we will stay healthy now and no events for kayden.I pray that all this will pass by everyone soon and the flu will stay away. UPDATE: 8-4-09 WOW where has all the time gone?? Kayden turned 8 years old last month. He has been through alot but is always such a happy lovable little boy. In the last couple years kayden has not had to be in the hospital much at all we are thankfull for that.He did have alot of stop breathing events that we never knew 100% what they were but started keppra and im happy to say that it has been 1 year since we have seen any event. Praise the Lord. So that brings me to today we are sitting here getting ready to leave childrens Mineapolis. Kayden had a earinfection last week taht was not getting any better and his ear and face started to swell from it so i took him to our ER where they did a CT scan with contrast. They saw what they thought looked like a nasty infection that had spread in to the bone. Because of this we were taken to childrens where we thought he would need to go strait to the OR to the infection drained as this could cause a brain infection as well. After many prayers from all Childrens said after looking at the Ct for them self that what Brainerd was looking at was old scaring from all the surgery he has had. So he has a nasty infection that took IV meds to help knock out but thankfully was not as bad as it first sounded. Kayden today is back to his happy self just ready to go home. Please keep him in prayer that he continues to do so well in all that he does. I just love everything about him and as i have said many times I am thankfull to God for trusting me in his care and picking me to be his mom. I pray that kayden has many many more years to show us his love. Braden is almost 11 years old and Jaiden turns 6 next month. They are growing overnight and i wonder how and where does all the time go? I wish i could slow it down some. They both are in BMX this year and are loving it. UPDATE: 3-23-09 Good Morning.Kayden is doing very well. He is so full of life and happy. Last night we all sat im his sensory room and played with him. He really loves to play with his drawers full of rice, beans, and noodles each one he gets just as excited with. I love watching him play and interact with Braden and Jaiden. Well im happy to say that it has now been over 8 months since kaydens last stop breathing episode. I was starting to think yep it must of been a seizure and the keppra is working. Now im investigating the possibility that these eppisodes were caused from his botox injections as he has not had those for 10 months now. I have found alot of research showing similar eppisodes in other children weeks to even a month after injection. Kayden was having these done every 3 months. Please pray we find out the answers we need. Even if we dont find in the end that they are from botox kayden will not ever receive these injections again. There is just to much nasty things the botox can cause. Kayden is in need of extra prayer for Tuesday morning as he will be having surgery. Kayden has a colestiatoma in his right ear.{type of tumor} This he had in his left ear two years ago and now his right. Typically im not nervous about when he gets put under anesthesia but July was his last time and about 30 seconds from being under he had a 60 second V-tach wich is pretty much cardiac arrest. This is very life threatening but thank God he came out of it on his own. We have not had him in for anything since. The Dr's could not find wyhe had this. Please pray he does well Tuesday with no problems at all. Kayden is strong but a little extra help would be lovely. I will post after his surgery. UPDATE: 1-2-09 Hello we are all doing well. The kids had a fun wonderful christmas. Kayden really loves the talking handy Mandy tool set he got ha ha it is so funny. Braden and Jaiden will be rocking to there new rock band for PlayStation. I have a few prayer request alot has gone on since we were on here last. My step sister who is only 39 years old passed away on the 10th from smoke in her lungs from a house fire started by her 2 year old son, so so sad and she leaves behind 4 kids. please keep her children and her husband in prayer as this is such a sad hard time for them all. Also a girl in jaidens class mom passed away the same day she was 31 and also has four children we are not sire the cause of death yet although she had a 10 day old baby she had been complaining of back pain and passed out they at first thought she had a clot that went to her heart as they were not able to get it going again but latest news say it was not a clot they still dont know what for sure it was this family has had to celebrate life and death all in the same time please please lift them in prayer. This has made me think wow they are my age this could happen to any of us at any time it saddens me to think of all those kids with no mom now how sad and heartbreaking that is. I thank God for my children I thank God for our health, I thank God for a place to call home and food in my fridge i thank god for my husband to help me. I pray for continued health for my family and strength for us as well. I pray for many many more year to come full of happiness health and goodtimes together. Please also keep kayden in prayer as he has caught a cold he stats are dipping some through out the night when he sleeps and has the nasty nose that is hard on him im hope the Neb's will help him and he gets over this fast. Love always Marta UPDATE: 8-28-08 Hello Kayden is doing very well. We are still not sure what caused his v tach episode but the Dr's did change him from albuterol to zopinex since the albuterol can make your heart faster they did not want to take any chances. Braden and Jaiden start school next week wow summer flew by so fast im sad and my jaiden is in kindergarten this year. what are kayden and I going to do with both of them in school now? UPDATE: 8-04-08 Well kayden went in to the OR at childrens to have his teeth worked on and with in seconds of being put under everything was stopped immediately. Kayden had a 60 second VTACH episode happen with his heart normally when this acres there is heart failure or a recent heart attack. kayden was admitted to the hospital and given a EKG, also a echo along with a overnight study of every beat of his heart. All these test were normal leaving the heart dr puzzled as to wy kayden would have had such a episode told since everything looked fine there was nothing they could do for us and we were sent home.This is puzzling and very upsetting as im so afraid somthing is being over looked i mean wy would this happen and what if it has been or will happen with out us even knowing? Maybe this is what is going on when he has these unexplained events he has been having. I hope not I pray not. I think im going to call around and see if there is anything else to check for. Please just keep kayden in prayer that he will continue to do well and that he will have many many more years to spend with us.Oh and a bit of wonderful news praise the lord kayden had two heart conditions all these years one being the VSD not so much to worry about with that but he did also have upper pulmonary steno-sis in most cases they need heart surgery to correct that. Well im happy to report that God has helped heel this in fact it is no longer present according to this last Echo it is compleatly gone. Praise the Lord. Kayden is how ever in very good spirits and happy as ever minus the few teeth that are causing some discomfort as they are coming in. LOL. On a lighter note We had Jaidens birthday party to day. we had lots of friends over to swim in the pool and go down the water slide along with grilling and pinata fun. He chose sports for the theme so he had a basketball pinata football, soccer,baseball and basketball decorations and plates and he had two cupcake cakes one looked like a basketball and the other a football totaling 48 cupcakes. UPDATE: 4-30-08 Kayden is home and doing well. He is such a little fighter and has recovered pretty fast. The lord sure has been with him through all of this. Please keep my friend Kelly in prayer as she is having a hard time with just giving birth to one child and loosing another 2 days later. I know that Amos is now watching over my sweet kayden. Also there is a little boy named Jayden who has a trach and not doing very well i came acrossed his web page by mistake months ago and now i get updates any way please keep him in prayer now too. Life is not measured by how many breaths we take but by how many moments that take our breath away. Thank you all for keeping kayden in prayer. UPDATE: 4-22-08 On friday kayden was airlifted to minneapolis. Braden and kayden both came down with strep and the mucus was way to much for kayden to handel and started to choke on it. He was in picu for 2 days on a vent and now is on 3 floor and hopefully going home today or in the morn. Thank god that kayden has bounced back so fast he is such a strong little boy. Im so ready to take him home we have had a a long very sad few days. My friend kelly was at childrens with her son amos who also has trisomy 18 and 3 hours befor kayden was airlifted there kellys son died next door to the room where my kayden was going into. so so sad im happy i was able to be here for her soon after. please keep her in your pryars she is not doing good as she gave birth to a baby boy 2 days befor her little amos passed away UPDATE: 2-22-08 HEllo sorry for not updating in a while. Kayden has been doing well. really nothing new to report. Im keeping quite on the breathing thing as when i mention it he seems to have a episode. Just keep him in prayer. Kayden is really babbling more I think soon he might say another word that would be so cool. Braden and Jaiden are doing good too. they are all getting so big. We are all ready for summer to come or at least spring. I hope all of you are doing well and are healthy. please also keep little Amos in your prayers he is in the hospital sick and needs to get better he too has trisomy 18. Also my new nieces mommy Baily could use some prayers too she has been sick since the baby was born and her test show that her kidneys are not working as they should and they have ran alot of test but her Mommy will not know anything for a few days this girl is only 15 i know she is a baby her self just keep her in your prayers that nothing really sereiouse is wrong. God bless marta UPDATE: 12-27-07 Kayden is doing very well. We are just getting ready for christmas and man it is coming so fast I feel as if we just did this. Where oh where does the time go? I posted some new photos on here in the album and im going to post a slide show on here i hope it works. Kayden has come such a long way and this week is the week that makes it a month since his last breathing episode and im praying for my christmas present that he does not have any at all. please keep him in prayer. Now enjoy the slide showing how far kayden has come and proving all the Dr;s wrong. THANK YOU LORD FOR KAYDEN HE IS TRULY THE BEST GIFT. UPDATE: 12-12-07 HEllo all I hope you all had a very nice thanks giving. I can not beleave how fast Christmas is coming this year. Well last week kayden had another breathing episode this time it was a bit more freaky as he was also in the middle of a feeding. So when i suctioned him and bagged him it brought all that up and he continued to choke on that too. We were able to finally get him stable witch seamed like forever and kayden and I stayed over night at the hospital just to be sure he was ok. Im so freaked i just dont have a clue on what to try to make this stop, he is so fine and healthy before and after each episode but is so close to death while it is happening, im confused and frustrated. Please keep him in prayer. HE is doing great now and happy getting in to everything he can ha ha. I took him to Gillette two weeks ago they checked his spine for scoliosis which he has a slight curve but nothing to be worried about just yet! yea. although i asked them to ex ray his legs and hips because i felt his right leg was a bit longer and i was correct so im not sure yet what we can do for that but when he is taking steps its like he has to really bring that left leg up alot before it goes back down, its not so notisable when you look at hi, only when im trying to get him to walk. also his hip sockets look real shallow so we need to keep a close eye on that too. It is getting colder here now and the snow is piling up fast. Last week we had no snow and now we have about 2 feet yuck. I'm dreaming for summer all ready. well god bless. UPDATE: 11-12-07 Well sorry im just getting back on here. Kayden is doing great again. We do not think he will need surgery from the ear infection. Thank the lord. They put him on 3 days of iv meds and sent us home with oral meds. The DR's think the iv meds knocked it out and although it went really deep in to the back of his neck they now do not think it made it to the bone. Kayden went in Tuesday to Minneapolis kids to see the Ent and he said his ears are looking great. BUT he wants us to come down again in 3 weeks for another CT scan to make sure that it is not affecting the bone. It amazes me how fast he bounces back and how strong my little man is. I tell you his pain tolerance must be high because a normal ear infection kills. Can you imagine what that felt like? HE fussed the night before he went in off and on and then the first night in the hospital he was happy all day till around 8pm. Kayden kept crying and crying they were staying on top of ibuprofen and Tylenol but it was not working by 11pm he was screaming so i made them give him some morphine and after that everything was great. Thank you all for your prayers. Keep them coming we can always use them. UPDATE: 11-5-07 Kayden is in need of prayer. I took him in around 30 days ago for a ear infection and after 10 days of meds he still had it so they switched his meds to another kind for another 10 days. well they were all done last week and now yesterday his ear looked again infected and pulled out some and hot. I took him in to the ER and they did a CT the infection has gone so deep now it might be in the bone so they had to place him on iv meds with a good chance of having surgery in a few days. This kind of infection can spread to the brain so please pray we caught this on time and he will be just fine. God bless all of you. I will post more as I know. Thank you. UPDATE: 11-2-07 Kayden is in need of prayer. I took him in around 30 days ago for a ear infection and after 10 days of meds he still had it so they switched his meds to another kind for another 10 days. well they were all done last week and now yesterday his ear looked again infected and pulled out some and hot. I took him in to the ER and they did a CT the infection has gone so deep now it might be in the bone so they had to place him on iv meds with a good chance of having surgery in a few days. This kind of infection can spread to the brain so please pray we caught this on time and he will be just fine. God bless all of you. I will post more as I know. Thank you. UPDATE: 9-17-07 Well we are home and Kayden is doing well back to his normal happy self thank the lord for that. We still have no true reason why this is happening once in a while. They did do a EEG and it showed a little spot of abnormal but i was told last time that it did too but with him having trisomy 18 it would be expected to show some abnormal and that they did not think it was causing any seizure activity. well this time they said well MABEY it might be we don't know for sure and wanted me to put him on seizure meds to see,,, well im not doing that because they for one do not know that it is one and every kid I know on those same meds does 1 of 2 things sleep all day and are like zombies or they scream a lot as it makes you very agitated, another mom I know took her child off because of that. kayden is very active and happy I refuse to take that away from him just to experiment I told the Dr even if it is its only happening once every 1 to 2 months and he said but your son is almost dieing each time, I understand that but what kind of life would he have then having to be druged up sleeping all the time. I look at it as he has 1 bad day out of how many in a month or two I do not want to take that away from him. personally I do not think it is a seizure this too is why im leery about giving him anything.Its like the mucus builds up then he gets a plug and chokes after we bag him it seams to clear it or push it down and shortly after he is fine again. He was having these ever month almost to the day I switched his formula 2 months ago as it was more milk based and that causes more mucus I see a change in his spitting or should i say reflux he is not really doing that any more and this episode made it 2 months since his last so I pray that changing the food is helping and we also have started doing nebs on a everyday basis again instead of just when he is sick. On a happy note we are almost done building our new swing set we have made it handicap exsesable it is so cool we have two huge playdeck with a huge walkway connecting the two and a ramp going up to it I have gotten creative and made a few thing for it too for kayden to enjoy like i took some PVC pipe and cut it to 4 different lengs and painted them all a different color they will be bolted side by side some where on the play structure and this will be for kayden to put balls down the tubes as he loves to put things into stuff. I also got a plexiglass mirror that will be framed and put up there for him to look at him self as he is so darn cute.Im also making some things he will be able to spin and see color while doing so.Im trying to come up wit the perfect bubble machine to mount up there too that will be ok getting wet. There is a inclosed twisty slide so we will be able to put kayden down while the other one catches him wow im so exsiteed he will have this when its done, not to mention so willthe rest of the neighbor hood ha ha.I told frank that i see on ebay people selling the plans to build swing sets a said we should write up the plans on this since we had to come up with it all on ourselves and sale it on ebay too ha ha there are a lot of people who would love to build a handicap accessible swing set im sure. Braden started football and Jaiden started soccer so we are busy doing the sport thing now. Jaidens first day of preschool is today he is so excited to go. please keep kayden in prayer. Marta UPDATE: 9-13-07 Well we are home and Kayden is doing well back to his normal happy self thank the lord for that. We still have no true reason why this is happening once in a while. They did do a EEG and it showed a little spot of abnormal but i was told last time that it did too but with him having trisomy 18 it would be expected to show some abnormal and that they did not think it was causing any seizure activity. well this time they said well MABEY it might be we don't know for sure and wanted me to put him on seizure meds to see,,, well im not doing that because they for one do not know that it is one and every kid I know on those same meds does 1 of 2 things sleep all day and are like zombies or they scream a lot as it makes you very agitated, another mom I know took her child off because of that. kayden is very active and happy I refuse to take that away from him just to experiment I told the Dr even if it is its only happening once every 1 to 2 months and he said but your son is almost dieing each time, I understand that but what kind of life would he have then having to be druged up sleeping all the time. I look at it as he has 1 bad day out of how many in a month or two I do not want to take that away from him. personally I do not think it is a seizure this too is why im leery about giving him anything.Its like the mucus builds up then he gets a plug and chokes after we bag him it seams to clear it or push it down and shortly after he is fine again. He was having these ever month almost to the day I switched his formula 2 months ago as it was more milk based and that causes more mucus I see a change in his spitting or should i say reflux he is not really doing that any more and this episode made it 2 months since his last so I pray that changing the food is helping and we also have started doing nebs on a everyday basis again instead of just when he is sick. On a happy note we are almost done building our new swing set we have made it handicap exsesable it is so cool we have two huge playdeck with a huge walkway connecting the two and a ramp going up to it I have gotten creative and made a few thing for it too for kayden to enjoy like i took some PVC pipe and cut it to 4 different lengs and painted them all a different color they will be bolted side by side some where on the play structure and this will be for kayden to put balls down the tubes as he loves to put things into stuff. I also got a plexiglass mirror that will be framed and put up there for him to look at him self as he is so darn cute.Im also making some things he will be able to spin and see color while doing so.Im trying to come up wit the perfect bubble machine to mount up there too that will be ok getting wet. There is a inclosed twisty slide so we will be able to put kayden down while the other one catches him wow im so exsiteed he will have this when its done, not to mention so willthe rest of the neighbor hood ha ha.I told frank that i see on ebay people selling the plans to build swing sets a said we should write up the plans on this since we had to come up with it all on ourselves and sale it on ebay too ha ha there are a lot of people who would love to build a handicap accessible swing set im sure. Braden started football and Jaiden started soccer so we are busy doing the sport thing now. Jaidens first day of preschool is today he is so excited to go. please keep kayden in prayer. marta UPDATE: 9-10-07 Kayden was airlifted to minneapolis yesterday. He had abnother stop breathing eppisode happen. Today he 100% DOING GOOD AND FULL OF SMILES THANK THE LORD. Please just keep kayden is prayer that these will stop or not be so bad. I had a Dr tell me yesterday well have you and frank thought about the fact that one of these times kayden might die you may not always get him to come out of these atacks. WHAT the heck is wrong with this man he kept pressing at that I told him You dont think i have known from day one my son could die at any time you dont think that with each one of these atacks it does not run through my head that he might not pull through, but for now he has and each time has ben just great after so for now i dont need to dwell on that he kept saying well i think you should like he wants us not to help him through the next one or somthing,,, to that i say bug off kayden has not lost any thing through these he is happy as ever knows who we are and loves every second of his life he signs mom and dad he ses mom and is very aware of what is going on he has done more in his 6 years then alot of healthy children have. he has a good life he may not be able to do all we can do but he is happy so wy would i not fight for him?? Some Dr's can be so dumb. HE then said well what are you going to do when he is 15 I said take care of him like im doing now. Hello what the heck.one minute you tell me he can die and now your worried about him being 15. sorry had to vent. im pushing to go home today he is doing fine. please just keep us in prayer. marta UPDATE: 8-23-07 Summer is flying by way to fast, there is so much more I would love to do with the kids yet. Kayden is doing great happy as ever and thank the Lord he has not had another breathing episode its bin a month in a half please keep him in your prayers. we got a new pool a few weeks ago its big and we get in it with the kids kayden loves it he floats around in his floaty he loves to try and dunk his head in the water over and over its so cute. The weather here is cold the last few days I really hope we get some warm weather again soon. Kayden went down to the immune Dr last week for blood work this will determine if he needs any extra boost for his immune system we go back on the 30th to find out. Im so happy to report that I applied for a part on the board for partners in policy making here in MN and they only pick 20 some a year for this and i was excepted we start our meeting once a month for a whole weekend next month. what this is is a group of peaople who work hard at getting to know and understand rights of disabilities and help pass laws that pertain to disabled individuals, this is huge and I can not wait to see where it brings me what I will get to be apart of and not only that it is my foot in the door to help change the way Dr;s view our trisomy 18 kids. we had to write a short section explaining what we have bin through and what we think about certain things the lady told me I sounded like a real spit fire and she could not wait to meet me. Well i got house cleaning to do and kids to feed so I will post more later. UPDATE: 8-13-07 Well we all had fun at Wisconsin dells.We stayed at the same place we did last year Treasure island connected to mount olympus water and theme park. They changed a few things since we were there a year ago they always had a wave pool but this year they added a HUGE title wave pool that was so cool all the kids loved it kayden got to sit on shore and have the waves hit him up to the neck area he laughed every time, his favorite seamed to be when he was in the kiddy area where they had a swing that you sat in and got splashed and his legs dragged in the water. I think the highlight for him though was in the hotel room where we had a Huge jet tub in our room he sat in there for ever with bubbles up to his neck playing with his action figures I will have to post some photos soon it was so funny. Kayden got a new toy, a ride on convertible car{power wheels} it is so cool i ordered it off the internet and it comes with a parent remotecontrol so he can ride and i can control where it goes, it playes music really loud and you can hook up a CD player or mp3 player to it how cool is that?? I was so happy to find somthing to help kayden have more fun like the other kids. Now all we need is somthing for winter ha ha ya he would probably rather stay in when its cold i know i do. Jaiden turns 4 August 18th Wow where do the years go? we are having a pirate birthday I got telliscopes eye patches, campuses and yes a treasure chest pinata filled with candy it should be a blast. When school starts kayden and i will have a couple hours alone as jaiden is going to go to preschool this year 2 days a week for a couple hours YIKES he really wants to try it but me being mom dont want to give him up yet he is the baby heck I still have a hard time with braden going. My kids were never in daycare so im use to being with them all the time. Oh well its good for us all i guess ha ha most other moms i know cant wait for school to start and get rid of the kids for the day I miss them when there gone and want to be there with them others think im nuts. well it has ben a month since kaydens last breathing episode and still doing good so please pray that he continues do well and that with all of our prayers and gods help kayden wont have any more of these. Thank you all. UPDATE: 7-16-07 KAyden is really in need of every ones prayers. 3nights ago kayden had another breathing episode these are happening once every month since DEC this one was exactly a month to the day. We have no clue Wye all of a sudden this is going on but out of no ware he will start choking on mucus and with in seconds his 02'sare down to 20-30% and we have to bag him and suction he is not sick before this happens nor after we deal with it anywhere from 20 to 40 minutes then he is fine each time we call 911 and he goes to the hospital once he is stable we go home. the second time this happened we stayed at childrens fro almost 2 weeks running test and no one could give us a answer they are not seizures but once his breathing gets almost next to nothing he goes in to seizures activity due from lack of oxygen his lips do a uncontrolled jerking and his body stiffens.each of these he has bean great till the next one this has happened 5 times now we have ben so lucky to get him going again please pray we find some answers and that this will not get worse. thank you all god bless. marta UPDATE: 4-26-07 WOW, we are so excited to finally have such beautiful weather. The kids have ben playing everyday out side with the neighbors and we have taken trips to the park a few picnics even this week. I love having warmth the kids get so much fresh air and sleep really good, ha ha ha. Kayden is doing very well, thank god for that. we continue to pray that he will not have any more breathing spells. we go to California for 2 weeks in June so im a bit nervous about that since these 3eppisodes have occurred. we had high hopes of a few family members joining us on our trip as it would of helped our nerves with kayden ease a little but it did not work out for them. staying home all the time because we are afraid is not the way to live either so we try to just take every day one by one. please keep us in prayer. kayden is working on using a electric wheelchair, we are going to Gillette on Wednesday to look over a few different types so we can figure what kind we want to order. He has really picked up on the joy stick it is so cute to watch he has a long way to go yet but he knows how to make it work and seams to really like it. I hope all the colds and flues will stay gone now as summer approaches all these kids with week immune systems need a break and would love to be able to get out some more and have fun. God bless and thank you for the prayers. marta UPDATE: 4-23-07 WOW, we are so excited to finally have such beautiful weather. The kids have ben playing everyday out side with the neighbors and we have taken trips to the park a few picnics even this week. I love having warmth the kids get so much fresh air and sleep really good, ha ha ha. Kayden is doing very well, thank god for that. we continue to pray that he will not have any more breathing spells. we go to California for 2 weeks in June so im a bit nervous about that since these 3eppisodes have occurred. we had high hopes of a few family members joining us on our trip as it would of helped our nerves with kayden ease a little but it did not work out for them. staying home all the time because we are afraid is not the way to live either so we try to just take every day one by one. please keep us in prayer. kayden is working on using a electric wheelchair, we are going to Gillette on Wednesday to look over a few different types so we can figure what kind we want to order. He has really picked up on the joy stick it is so cute to watch he has a long way to go yet but he knows how to make it work and seams to really like it. I hope all the colds and flues will stay gone now as summer approaches all these kids with week immune systems need a break and would love to be able to get out some more and have fun. God bless and thank you for the prayers. marta UPDATE: 4-13-07 HAPPY EASTER! Im happy to report that kayden is doing very well at this time. We pray that he continues to do well with no more breathing spells. The kids are having a great Easter we did our own little Easter hunt they loved it i only wish it was warmer so we could of done it out side. Please pray for Amos to go home soon, petterand sarah to stay healthy and for wylan who is having many problems with his kidneys and skin tares. have a great easter.marta UPDATE: 4-9-07 Im happy to report that kayden is doing very well at this time. We pray that he continues to do well with no more breathing spells. The kids are having a great Easter we did our own little Easter hunt they loved it i only wish it was warmer so we could of done it out side. Please pray for Amos to go home soon, petterand sarah to stay healthy and for wylan who is having many problems with his kidneys and skin tares. have a great easter.marta UPDATE: 3-29-07 Well kayden is need of heavy prayer. He had yet another breathing spell a few days ago out of no ware he got a mucus plug and started choking and could not breath. i deep suctioned him and it was not working it was so thick i had to call 911 and when we got to the hospital he went down hill again , they wanted to air lift him at first but it was to foggy and they could not get flight clearance. They got him stable and stayed at the local hospital over night. What seams to be happening is he gets flem in his throat and can not clear it when it is thick, causing these spells, that freak us and him out. Please pray that they will not continue to happen, we started him on daily nebs again in hopes those will keep his secretions thin. Other then that he is doing great and we are all so happy to be getting warm weather so early. i will keep you posted. marta UPDATE: 2-22-07 Well great news the sleep Dr called today and kaydens sleep study went very well, he said it is a time to celebrate as it proved him to have next to no apnea spells or desats through out the night. 3 years ago he was having 90 an hour yes 90 wow that was allot and so they took out his adenoids and his uvula and he still had a few through out the night after that but nothing to worry about. The reason we had another one done was because of the two breathing spells kayden had last month I guess this just goes to prove my theory on aspiration and choking while he was sleeping. I praise the lord for this great news and pray that his aspiration will stay under control with no more spells. Kayden goes on the 6th for botox and new ear tubes. Kayden is doing much better this week the last 2 months have been a bit trying but he has gotten through it just fine. I pray he stays healthy now for the rest of the winter. Speaking of i hear we may get a lot of snow this weekend i hope it mostly passes us as I'm ready for warmer weather and green grass. We have already started planing our summer June 6th we leave for two weeks to California I can not wait we so need a while away from here just us and our children. so many say man that is not a vacation when your taking your kids with. To me it is I love doing things with my kids and just being away having fun everyday and being all together with frank not having to go to work will be relaxing to me. Well kayden is getting ready to lose another tooth, this is nerve racking as his airway is so small so for every loose tooth i go crazy in fear he will choke on it. The last tooth i woke up to him chewing on it and thank god i was able to get it out in whole with a little fight ha. His tummy muscles are getting so strong he will go from laying to sitting in a second its like he is doing crunches it so funny to watch him do it over and over. As far as his walking is going everyday is different he is stubborn some days he will take many steps and others just a few we will continue to work hard with him at this. Kayden loves to sit in his electric wheel chair he knows the cause and effect he hits the joystick and loves when he moves. Now we have lots of work at helping him learn to drive it. I'm so amazed at how far kayden has come over the years it truly is a blessing and a joy to watch him grow. Hard to think my little man will be 6 this June wow I remember that first year waiting for the worst and now we plan we actually can plan on things to do a few months out something i thought we would never be able to do. It's still a bit freaky and things could happen at anytime but kayden does well and he is strong and all we can do is help him grow and learn and become stronger, this i pray the good lord keeps helping him and us through for many many years to come. kayden i believe has a lot to teach and has already. Thank you for your continued prayers. Marta UPDATE: 2-1-07 Well Kayden has been doing very well. I pray he continues to be healthy and that we can figure this thing out with him. Next week is his botox and ear appointment in the OR the the fallowing will be his sleep study. Kayden was show in tell at the middle school last week they were learning about chromosomes and trisomy 18 was one of them. The teacher pulled out a news paper article with kaydens photo on it and my friends daughter quickly yelled hey i know him, so the teacher asked her if he could come meet them all, it was fun and kayden even showed off for them by taking a lot of steps towards Brenna. will post more later. UPDATE: 1-15-07 Well my sweet Kayden is in the hospital here at childrens. Last sat he had another stop breathing episode, we are not sure wy this has happend 2 times this month now, i do think he is asperating more and that he could be choking on it when he has done this we hope to have another gi study done in the morning, but at this time not sure what to think, he is happy today but man two night ago he must of caught a bug here he was throwing up all night and sening his heart rate up to 210 even and stade at about 160 range when he should be around 120 and from 88 to 100- when asleep. Please pray we can figure out what is wrong and that this does not becaome somthing we will continue to see. also please put on your prayer list, Jordan,8 ameous 8months sara 1 they are all trisomy 18 too and here still at the hospital. please also pray fro peter age 2 who is home but having many many siezers. I will post more when i know what is going on. i f we even get any answers. marta UPDATE: 1-11-07 Well my sweet Kayden is in the hospital here at childrens. Last sat he had another stop breathing episode, we are not sure wy this has happend 2 times this month now, i do think he is asperating more and that he could be choking on it when he has done this we hope to have another gi study done in the morning, but at this time not sure what to think, he is happy today but man two night ago he must of caught a bug here he was throwing up all night and sening his heart rate up to 210 even and stade at about 160 range when he should be around 120 and from 88 to 100- when asleep. Please pray we can figure out what is wrong and that this does not becaome somthing we will continue to see. also please put on your prayer list, Jordan,8 ameous 8months sara 1 they are all trisomy 18 too and here still at the hospital. please also pray fro peter age 2 who is home but having many many siezers. I will post more when i know what is going on. i f we even get any answers. marta UPDATE: 1-4-07 Hello, Kayden is doing very well, happy as ever. Lets just pray he stays healthy and no more episodes. We all had a nice christmas the kids enjoyed opening there gifts and kayden was so fun to watch this year as he is more aware it was so cute each thing we helped him unwrap we would stack on him and around him, his eyes would cross and his lips would pucker as he looked at it all like oh my what is all this and is it for me. We had mine and franks family over on saturday for christmas with them kids had a blast and we eat alot, it sure was a long day, we went to church on sunday morning and the kids fell asleep to all the christmas music. I loved it singing all those christmas songs and all was so nice. Please continue to keep us in your prayers. and please add a few other children to the list for me as they too are going through alot at this time do to there medical conditions, ameous,petter,sarah,sabastion,corey and ema. Thank you and God bless. Marta UPDATE: 12-7-06 WOW,we just got home from the hospital, the night befor last at 4am kaydens alarms went off he stopped breathing on us, well his stats were done in the 30 and 40;s was next to nothing for breathing i had to call 911 and i had to start doing rescue breathing for him,We are not sure but we think he spit up some and choked becausse of course later after getting to the hospital he was fine, and he had nor does he have any signs of being sick. Frank and i were so freaked out how horriable to have to do spr on your own kid all i kept thinking is that i was not doing it correct, panic panci and more panic I thank god that he aloud us to get kayden going again and that he is fine now please pray that he has no more problems and that now being in the hospital he wont get sick. My little man is such a fighter and he truly loves life and loves us and we all love him too so much. Please also pray for jaiden and braden as they were awoke and seen all the comotion i dont think it was as bad for jaiden as he did not really undersatnd how bad it was but poor little braden was so upset he was crying and kept asking if he was going to be ok i feel so bad that he had to see all that.He always tells me mom if i had only 1 wish it would be that i could make kayden just like us. Bless his little heart. always marta UPDATE: 12-4-06 WOW,we just got home from the hospital, the night befor last at 4am kaydens alarms went off he stopped breathing on us, well his stats were done in the 30 and 40;s was next to nothing for breathing i had to call 911 and i had to start doing rescue breathing for him,We are not sure but we think he spit up some and choked becausse of course later after getting to the hospital he was fine, and he had nor does he have any signs of being sick. Frank and i were so freaked out how horriable to have to do spr on your own kid all i kept thinking is that i was not doing it correct, panic panci and more panic I thank god that he aloud us to get kayden going again and that he is fine now please pray that he has no more problems and that now being in the hospital he wont get sick. My little man is such a fighter and he truly loves life and loves us and we all love him too so much. Please also pray for jaiden and braden as they were awoke and seen all the comotion i dont think it was as bad for jaiden as he did not really undersatnd how bad it was but poor little braden was so upset he was crying and kept asking if he was going to be ok i feel so bad that he had to see all that.He always tells me mom if i had only 1 wish it would be that i could make kayden just like us. Bless his little heart. always marta UPDATE: 10-26-06 Well we had a great weekend. We took the kids to mall of america to go to camp snoopy to have a gettogether with the other trisomy 18 kids from here. They got to dress in there costumes as the mall does somthing every weekend till halloween it was fun and all the t18 kids looked great. I could not wait to get to the cities as this time i would get to meet kelly and baby ameis kelly is a mom I met by phone who lives in nebraska her son is 5 months old and after he was sent home from the hospital he got realy sick and they refused to readmit him because he had trisomy 18 she found her self in Iowa 3 hours away where they would admit him but they made her sign a DNR this i told her was wrong they can not do that so i had her get it lifted, then i gave her a number here to a dr i know. I had his personal number but i thought if she called he would have to talk to her and if i called he might not call her, i told her to question about getting her baby air lifted here to our hospital in minneapolis here we have to jump through loops somtimes on getting our kids treated but we can and have ben getting it done atleast, so after a few calls and some pleading it happend,last friday was the first time i spoke to her and by tueday he was airlifted here to Minnesota . WOW, Frank said nobody tells me NO, ha ha ha. ON this friday that just passed i called the white house yes you read this correct i said the WHITE HOUSE. i even got a live person im working on getting something to gether and a larg group of us moms and in somrtime i hope to get a law passed so that Dr's in any state can not refuse treatment to our children just because they are trisomy 18 if us as parents want somthing done to help our kids then we should beable to get it done. No research on t18 has been done since 1960 and everything reads death so dr's see that and say wy bother? well heres what i think that a study needs to be done on kids who are living and were given a chance and given the surgeries that need to be done and then the books would change because they would see that more kids with t18 would live much longer an d\ do more things. If it is so uncomon and rare for a t18 to live passed 1 then wy do i have with in three hours of me 9 kids that i know of up to 18 years of age living with t18? i tell you wy because us parents here have faught for our kids and corrected what has needed to be corrected as it needs to be.If it was as rare then we would not have this many within 3 hours of eachother. Years ago they use to say the same about downs kids and would tell paretns to do nothing and let them die today we know this is not truse and they are looked at difernt now and are given help. I say if i was given a 90% chance to die and a 10%chance to live i know i would fight for that 10% chance how could i do any less for my son?? My son is happy and knows who we are he is learning more all the time i would NEVER change a thing if i had a choice i would do everything the same. Please keep all of our trisomy 18 kids in your prayers. love marta UPDATE: 8-24-06 hello, we have had a fun but fast summer. All the kids were doing great intill last week when Braden and jaiden were stung by bees the other daY Braden got a infection from one and had to go get meds. Jaiden started running a fevor tonight and said his neck hurt, im afraid he may have strep as my friends son had it the other day and was over. Please pray kayden does not get this too he has ben so healthy and in one week we are going to wisconsion dells waterpark so wee all need to be healthy. Im Home schooling braden this year or i shoild say im trying it and we will see how it goes, it is public school at home they provide the computer and text books so we still have a teacher to call and check in with but we will be doing it all at home kayden will have all his ot,pt and speech done at home like we did all summer they will come three times a week for him to our house see i pulled kayden out of school this summer and all he has had is a ear infection so given the fact that befor he was getting sick all the time i want to try this for his health keeping the two kids home with me instead of in a class room with lots of germs. please pray this will work for us and braden will listen good to me and fallow well. marta UPDATE: 8-14-06 hello all, Kayden is doing verry well in the last almost 4 months kayden has only had a ear infection praise the lord. We are at childrens for his normal 6 month checks everything looks good. Man our summer has been so hot we have just been going to the lake and playing on the huge water slide we got the kids.They have so much fun on that thing. We took the kids to valley fair this last sat they had a blast but for us adults of course only a few rides could be squeezed in but watching them have fun was great. well not much else going on. Please keep kayden in your prayers. marta UPDATE: 8-9-06 hello all, Kayden is doing verry well in the last almost 4 months kayden has only had a ear infection praise the lord. We are at childrens for his normal 6 month checks everything looks good. Man our summer has been so hot we have just been going to the lake and playing on the huge water slide we got the kids.They have so much fun on that thing. We took the kids to valley fair this last sat they had a blast but for us adults of course only a few rides could be squeezed in but watching them have fun was great. well not much else going on. Please keep kayden in your prayers. marta UPDATE: 7-10-06 Hello, not much to report everone has been great, thank the lord. We have been going to the lake alot this last week and going again this weekend, on monday we will be going to children for the feeding clinick and then to mappel grove for a trisomy 18 metting we will be having a bbq should be fun. please keep baby petter in prayer he has been sick alot and baby sarah is going home on the 13th so they need prayer for strength and for her to stay healthy. and as always lift kayden in prayer too hope we have a fun summer with no hospital stays. Our 4th was fun waqrm but not to hot to handel so that was nice as always the kids loved every bit of it. Braden and jaiden are both in baseball now so 2 times a week we are doing that, they just love it. marta UPDATE: 7-03-06 Hello, kayden is doing great. He turned 5 on the 19th wow hard to think he is 5 now what a big boy, we hadf a fun birthday although it rained all day so we had to have it at a hotel in the swimming area as we were having it outside at forst, but all went well and everone including him had fun, we had around 35 peaple come. We are in minneapolis tomight as we came to get some test that needed to be done but there was a misunderstanding in the order so it did not get done in the morning we are headed to wisconsin to see my childhood girlfriend who flew in from florida for a family reuion next week she will come to our house for 2 days. the kids are looking forword to the 4th always a fun day. braden and jaiden bothe are in baseball this summer it is so cute to watch them play braden is verry good at hitting the ball and jaiden is just lurning its so cute. take care and god bless. please keep praying we have a fun and safe summer with no kids getting sick. marta UPDATE: 6-29-06 Hello, kayden is doing great. He turned 5 on the 19th wow hard to think he is 5 now what a big boy, we hadf a fun birthday although it rained all day so we had to have it at a hotel in the swimming area as we were having it outside at forst, but all went well and everone including him had fun, we had around 35 peaple come. We are in minneapolis tomight as we came to get some test that needed to be done but there was a misunderstanding in the order so it did not get done in the morning we are headed to wisconsin to see my childhood girlfriend who flew in from florida for a family reuion next week she will come to our house for 2 days. the kids are looking forword to the 4th always a fun day. braden and jaiden bothe are in baseball this summer it is so cute to watch them play braden is verry good at hitting the ball and jaiden is just lurning its so cute. take care and god bless. please keep praying we have a fun and safe summer with no kids getting sick. marta UPDATE: 6-8-06 Hello, kayden is doing verry well at this time, thank the lord. please pray he stayes healthy this summer so we can have a fun summer. Kayden will be 5 on june 19 wow i thank god for that every day he is getting so big and is now taking steps when you hold on to him he is trying so hard, he makes me so proud. well i just had sarah;s 4 siblings again for a week wow it was fun and hard all at the same time. My computer is broke so i have not ben on here for a while. I nwill try to update as i can, please keep sarah;s family in your prayers and baby peter too as he has ben sick off and on alot. love marta UPDATE: 6-5-06 Hello, kayden is doing verry well at this time, thank the lord. please pray he stayes healthy this summer so we can have a fun summer. Kayden will be 5 on june 19 wow i thank god for that every day he is getting so big and is now taking steps when you hold on to him he is trying so hard, he makes me so proud. well i just had sarah;s 4 siblings again for a week wow it was fun and hard all at the same time. My computer is broke so i have not ben on here for a while. I nwill try to update as i can, please keep sarah;s family in your prayers and baby peter too as he has ben sick off and on alot. love marta. UPDATE: 5-18-06 Well i will truly feel like a mom this mothers day. as i wrote last week baby sarah had to get a trach this last sat her older 19 year old brother was in a mortisicel crash and is in another hospital with brain swelling and today they will be givi8ng him a trach too, what are the odds this could apen only a week later now there mom needs to be at two places so i went and brought home her 4 children with me i now how 7 children under 7 for a while. they are good kids and miss there mom and dad please keep this family in your prayers and pray kayden stays healthy. marta UPDATE: 5-15-06 Well i will truly feel like a mom this mothers day. as i wrote last week baby sarah had to get a trach this last sat her older 19 year old brother was in a mortisicel crash and is in another hospital with brain swelling and today they will be givi8ng him a trach too, what are the odds this could apen only a week later now there mom needs to be at two places so i went and brought home her 4 children with me i now how 7 children under 7 for a while. they are good kids and miss there mom and dad please keep this family in your prayers and pray kayden stays healthy. marta UPDATE: 5-8-06 Hello, well i have had a long week baby sarah had to have a trach put in like kayden use to have this happend last monday so i went down to be with diane and took her two younger kids 3 and 4 home with us for the week they went home today. Please keep her in your prayers that everything will go better for her now and that she will come home soon. also petter and jordan got to go home from the hospital so pray they stay healthy along with kayden we do not need to be there with him too now. god bless, marta UPDATE: 4-20-06 Well, we had a great easter we drove to the cities,2 hours away to spend it with baby sarah's family { 3 month old trisomy 18 like kayden] they are staying at the ronald mcdonald house the kids had a blast ran around playing all day. OH GREAT NEWS, kayden has been for a while taking two to three steps when giding him but yesterday on easter frank held him under his armpits and he took 15 or more steps on two difernt times, what a blessing this is we were so happy and shocked! He is doing so well praise the lord. We did ot get home till 1am and at 7am i left the house to head back doun there as sarah was comming off the resperster today and i was going to help be with her other kids so she could stay with sarah all day incase anything went wrong. Crazy how things happen for a reason i was to take all three of my kids with me as frank had to work, but with getting home late and only 3 hours of sleep he called in and satyed home with the two little ones and i took braden with ,me aong with having my sister kendra go with to help keep me awake. Well sarah did great and is still doing good so far praise the lord and pray she continues to do great but the twist is when i got there i found out that 1 year old petter was braught in lastnight because he stopped breathing and had to have cpr, so kendra stayed with my son and dianes other children while i went to the hospital i went in and petter looked great i held him and rocked him and he fell asleep in my lap, i went and sat with sarah a little longer then went back to the ronald house to feed the kids not even ann hour later im finding out petter stopped breathing again and put him down in picu now next to sarah i flew back to the hospital i sat there till things seamed fine again, the had no clue yet what was wrong i drove back to be with the kids, once again 1 hour later peter did it again this time it looked bad and they intabated him they did a spinal and took lots of blood. we have no clue yet what is causing this , many sugestions like reflux, seizeres and so on but it lookes like somthing brought this on hard to think it just started happening for no reason like a few of the docs want to say they just blame it on trisomy 18. so i sat there till 9:30pm I JUST GOT HOME it is 1am i did not want to leave but i had to also jorden who is 7 was on 7th floor with nimonia she too has what kayden has. today was so heartbreaking as i have known petter since he was a baby and he looks so much like kayden did. please keep them all in your prayers, and pray that kayden stays healthy. i know i was ment to be there to day with peters mom i only wish i could stay and be there for them. UPDATE: 4-6-06 WEll kayden got real sick again he had strep, and with his airway problems it was verry hard on him, I took him in to the er here and the re doc said she thinks he needs to be admitted ut since childrens is use to him we should transfer him, i told her that yes he is sick but i dint think it was bad enough to have to go to minneapolise i told her that i wanted him to saty at this hospital and if anything started to change that i would be the first to tell them he needed to go. she agreed and then the peds dr came in man is he dumb in my book he is verry cold hearted and could give to he wanted me to just take kayden home this is the atitude he always has when it comes to disabled children i have talked to many other moms. God forbid if a child needs to be admited that actualy needs to be taken care of he tried saying isnt kaydens 02 levells always low?? are you kidding he has benn the local peds dr for him for how long he should no better kaydens 02 are always great 99 to 100 any way i got him up on the floor the reason for this was to get iv meds because they work so much fster, the next morning the dr came in kayden was crying dropping his stats and trying to cough up a flem ball he looked at me and said oh kayden can go home this smorning dont you think?? I said hello he has been up all night doing this so he said well we will watch him alittle longer then this afternoon he can .leave what a jerk, 30 min after he looked him over kaydens iv went to crap so the nurse called him and he said to just put him on oral meds, i swear he messed with the iv. so after that i took kayden home did extra nebs and called the drs in at childrens to get meds that open the airway we will take care of him at home and if he gets bad he will go strait to childrens. the acsact time we were admitted here so was another family with a boy with medical need like kayden feeding tube and so on. they did the same to this family nothing but problems did not want to help him or kayden. please keep them in your prayers. UPDATE: 4-3-06 WEll kayden got real sick again he had strep, and with his airway problems it was verry hard on him, I took him in to the er here and the re doc said she thinks he needs to be admitted ut since childrens is use to him we should transfer him, i told her that yes he is sick but i dint think it was bad enough to have to go to minneapolise i told her that i wanted him to saty at this hospital and if anything started to change that i would be the first to tell them he needed to go. she agreed and then the peds dr came in man is he dumb in my book he is verry cold hearted and could give to shits. he wanted me to just take kayden home this is the atitude he always has when it comes to disabled children i have talked to many other moms. God forbid if a child needs to be admited that actualy needs to be taken care of he tried saying isnt kaydens 02 levells always low?? are you kidding he has benn the local peds dr for him for how long he should no better kaydens 02 are always great 99 to 100 any way i got him up on the floor the reason for this was to get iv meds because they work so much fster, the next morning the dr came in kayden was crying dropping his stats and trying to cough up a flem ball he looked at me and said oh kayden can go home this smorning dont you think?? I said hello he has been up all night doing this so he said well we will watch him alittle longer then this afternoon he can .leave what a jerk, 30 min after he looked him over kaydens iv went to crap so the nurse called him and he said to just put him on oral meds, i swear he messed with the iv. so after that i took kayden home did extra nebs and called the drs in at childrens to get meds that open the airway we will take care of him at home and if he gets bad he will go strait to childrens. the acsact time we were admitted here so was another family with a boy with medical need like kayden feeding tube and so on. they did the same to this family nothing but problems did not want to help him or kayden. please keep them in your prayers. braden started soccer today he loved it and he was verry good jaiden wanted to run out and try it too to bad he was not old enough. UPDATE: 3-27-06 Hello, it is 12:50am and we just got home from minneapolis. Kayden had a dr apointment today at 3pm with the ent just to see how his ears looked now after surgery, they look great and we descused kayden comming there for feeding clinic because he is really wantting things to eat so i will have them be the ones to try solid things slowly that way if he chokes we are already there in there care. We were there for so long as we had to visit baby sarah and her family for a while and also another family we know corey and ema who are brother and sister were both there with there own problems but lucky for mom they got to share a room corey is 4 and has mito diesease and his 2 month old sister has ben having problems so they think she too has this she had a feeding tube put in today so now mom has 2 kids with feeding tubes and way ema was already at childrens and poor corey must of missed her and mom as yesterday he went in to a major episode along with siezing for a long time so the helicopter landed in there yard and took him to children too. while visitiing them i had told margo that i was thinking of taking the kids to chucky cheese while we were there little did i relize how late it was getting and as we were on our way out she mentioned it not knowing i had not told the kids so as you guessed we had to stop we got there after 7:30 and didnt leave till 9:00. But the kids had fun kayden even road on all the rides he loved it and we were just about done when a verry nice man handed us about 50 more tokens because him and his friend were leaving OH YEA how nice of them but my mom was thinking she wantted to tell them to give them to another family as she was ready to go ha ha ha NOT YET as we coulnt pass up the extra fun. please keep all the kids in your prayers. god bless. marta UPDATE: 3-23-06 Hello, well praise the lord we all have been healthy for a couple of weeks now. I pray it stays that way as this wintter every other week someone was sick. I took the kids to the hotel water park here the other day they had a blast. I walked through all the spraying water with kayden then i put him in his wheel chair and walked him through the waiting pool that has a dinasour skeletin that sprayed water as you walked through it he loved it a little cold but he was smailling from ear to ear. Braden had spring break this last week back to school in the morning now man i think it went to fast, everyone else i know couldnt wait for there kids to go back i hate him having to be away from me not to mention the headach of getting up every morning early and dressing all three kids and driving to the school. I cant wait till summer. oh please keep baby sarah in your prayers she wasnair lifted back to childrens again she got real sick. god bless, and have a good day. love marta UPDATE: 3-20-06 Hello, well praise the lord we all have been healthy for a couple of weeks now. I pray it stays that way as this wintter every other week someone was sick. I took the kids to the hotel water park here the other day they had a blast. I walked through all the spraying water with kayden then i put him in his wheel chair and walked him through the waiting pool that has a dinasour skeletin that sprayed water as you walked through it he loved it a little cold but he was smailling from ear to ear. Braden had spring break this last week back to school in the morning now man i think it went to fast, everyone else i know couldnt wait for there kids to go back i hate him having to be away from me not to mention the headach of getting up every morning early and dressing all three kids and driving to the school. I cant wait till summer. oh please keep baby sarah in your prayers she wasnair lifted back to childrens again she got real sick. god bless, and have a good day. love marta UPDATE: 3-6-06 Hello all, Kaydens surgery this smorning went fast and well, we were only there for almost 3 hours total so verry good day he is happy and for the most part feeling great. well i freaked out and had a relly bad day yesterday well i hav e ben feeling like this for a while but yesterday was the last day to cancell my trip to mexico and still get some money back yes i was supost to leave monday morning BUT i really just cant not see leaving my children and husband for a whole week i can not do it. i loose some money on the deal but im putting it twords the money i would have taken with me and gunna get our tickets to go to caLifornia again this summer as a family. I rather be with them AND SEE MY KIDS HAVING FUN. I know i could have had fun but i know i would have gone insane so home i stay. UPDATE: 2-16-06 Hello sorry i have not uodated in a while as we are all sick with a nasty cold. Kayden heeld from surgery very well, he goes back on the 2 they will put him out and clean his ear and relook at it. other then having a reaqlly bad cold he is doing great. Here is the shocker,, I have NEVER left my kids over night befor not once and braden is 7 and on the 6th of march for a whole week my wo cousions chanel and shayla are goinf to play del carman mexico. Im freaking out now about it and wonder if i did the wrong thing by getting a ticket im so afarid to leave my kids for that long,kaydens nurse from school will take care of the boys during the day while frank is at work they around 5pm every day he will be with them for the rest of the night, i know they will be in good hands but still i worry. please pray they will all be fine and thet kayden stays healthy. im also woried about getting on the plane i hate them please keep me in prayer that i will not worry so much about everything. baby sarah is in need of alot of prayer as she is not doing verry well please pray that she gets stronger and that the dr's will do somthing for her. god bless love marta UPDATE: 2-13-06 Hello sorry i have not uodated in a while as we are all sick with a nasty cold. Kayden heeld from surgery very well, he goes back on the 2 they will put him out and clean his ear and relook at it. other then having a reaqlly bad cold he is doing great. Here is the shocker,, I have NEVER left my kids over night befor not once and braden is 7 and on the 6th of march for a whole week my wo cousions chanel and shayla are goinf to play del carman mexico. Im freaking out now about it and wonder if i did the wrong thing by getting a ticket im so afarid to leave my kids for that long,kaydens nurse from school will take care of the boys during the day while frank is at work they around 5pm every day he will be with them for the rest of the night, i know they will be in good hands but still i worry. please pray they will all be fine and thet kayden stays healthy. im also woried about getting on the plane i hate them please keep me in prayer that i will not worry so much about everything. baby sarah is in need of alot of prayer as she is not doing verry well please pray that she gets stronger and that the dr's will do somthing for her. god bless love marta ADDED: 10-21-02 CURRENT STATUS: Sunday, October 20, 2002 at 10:45 PM (CDT) Hello all. Well Kayden is doing better today he did have some o2 this morning but only for a while, so i hope he does not need to have any more. I gave him last night and tonight a body rub, he LOVED it he laughed and moaned alot, guess he is like me I love that. His smile is just cute. It make's your whole day better, even when he is not feeling good he always has a smile for us, I wish I could be so happy when I dont feel good, I guess he is just always letting us know how much he loves us. Well if any of you have read Kaydens other web page with his story on it, then you know that my other son Braden had to get rid of his kitty when Kayden was born because of the trach, my mom took it and now it is a out side cat we told braden that when the trach came out he could have his cat back BUt we do not want a out side cat so my mom is keeping that one and Braden got two new kitty's last night, black and white is oreo and orange and white is tigger. They are so cute, the balck and white one is Kayden's. Braden picked the other one for himself because his other cat that my mom has looked the same. My husband is alergic to cats so he has to take med's so he can feel ok. Thank you daddy for letting us still have them.What a great Daddy. Im glad that Kristy had a chance to see Kayden. She is a lady I met from mearans sight that also had a child born with trisomy 18 years ago, she never has had the chance to know alot about trisomy 18 let alone see a child with trisomy 18, now because of Kaydens web page she has had a chance to read other childrens story's that have the same thing, she said she feels closer to her son that died, and for that im happy and thank god for bringing us together. Marta KAYDEN'S BEGINNING: Kayden was born June 19,2001. We had no idea before he was born that he had anything wrong. Immediately after he was born they had him off to the side, everything seemed fine except that I thought it was taking a long time for them to hand him to me. They called another doctor in and I could see them using the Abu bag on him as he wasn't breathing. It was discovered that he had a smaller jaw that caused his tongue to block his air way. They had to pry his mouth open with a piece of plastic and tape it to his face, while doing that they also found a cleft palate. Kayden was taken by helicopter to children's three hours away. We arrived a few hours later and were told that he had Pierre Robin which is were the jaw does not grow all the way forward and that he would need a trach in order to survive. They told us that his jaw would be fixed by six month's of age and the cleft by one year, then everything would be fine. A couple days later we were told Kayden had VSD, a small whole in the heart BUT not to worry because it would go away on its own. So even though we were very sad for our child we new he would be ok so we went on to start classes on how to care for his trach. Three long weeks later they did routine chromosome checks and found out that our little one had TRISOMY18, an extra half of an 18th chromosome and that it was translocated to the 13th. They told us that this can cause 101 different problems including the ones he already has. They said most babies die by two months of age, while only 10% live past a year, if that was not enough we were told that they would be surprised if he did not have severe mental problems. WOW, what do you do with that? WE were so afraid, all I could say, besides cry, was when can he come home, we just want him home. So, they had to run test to see what type of g-tube to give him since his jaw was to tight to take the bottle. He would only take about 5cc by mouth. During the test they found that it also caused him to have malrotation, his bowels and intestines were twisted the wrong way. They had to go in and fix that, take out the appendix and place the G-tube all at the same time. Kayden was only three weeks old but came through with flying colors. He got to come home when he was 2 months old but one week later he got tracheal bronchitis and had to go back. While there, they found a hernia in his testicles so had to do surgery on that too. We were there for three weeks, he got sick a few more times so back and forth we went. It was all trach related problems as an open air way makes it easy to get sick. Kayden just had his jaw surgery on Nov 29th and they had to place bars on his face that are bolted to his jaw, those bars come out next week and then shortly after the trach will be gone. We have waited for this moment for a long time. Kayden weighed 4 pounds 11ounces at birth and now weighs 13 in a half pounds. He is doing so well, he tracks things with his eyes, he can hold himself up, he laughs, he now eats more by bottle and started to eat some solid food too. Best of all he can now sit by himself for up to 5 min at a time. With only a half of an 18 instead of a full he has a better chance, they just don't know how much. In a way it is a good thing because they really have no clue and Kayden keeps surprising them. No one can believe how well he is doing. I'm sure he may end up being slow at some things but you can already tell he won't be as bad as they once thought. I am so proud of my little angel, he has been so strong. What a little fighter he has been! He has brought us so much joy and every day is better than the last. Kayden has made me a better person. My husband's name is Frank and we also have a little three year old boy named Braden. Braden has been a little trooper through all this. He is so smart and has learned so much about Kayden. He knows how to work the equipment and knows what the trach is and everything. It is so amazing what he has picked up on, he loves his brother so much he has been with us every day through this with Kayden. We never once had someone take him. Braden even got to see Kayden be born because it happened so fast that not even the doctor made it. The nurse had to do it all. The reason that Trisomy babies don't always make it past a year is they don't have a good immune system and could stop growing at any time. They are normally very small, don't grow very well and have a lot have heart failure. But Kayden is growing just fine and while he is still small he has tripled his birth weigh. This last visit to the doctor they found another heart problem called SSP. A very uncommon problem, they said that it could go years before he would need surgery on it but one day he will need it fixed. At the same time the doctor said he does not see this as a problem for him as long as they watch it close so they know when to repair it. I thank God for my strong boys every day and try not to think of what might happen but to see all the good that has. If you would like to add a page for your child, click on "Add A Child" below. Please be aware that once a child's page is added to this website the information becomes public. Please keep this in mind when posting information. It is recommended that you DO NOT post your full names or addresses unless using a post office box. We can not be responsible for who views these pages as they are open to the general public. We suggest a password protected page for optimum privacy. Need information? Contact: Elizabeth Ricard, President Children of the Promise, Inc. 405 Shady Pine Lane Newcomb, TN 37819 866-565-KIDS president@childrenofpromise.net JOIN FOR DAILY UPDATES Please join thousands of prayer warriors around the world as we pray for our children. Simply send us an email with subscribe as the subject. Children of the Promise is a 501(c)3 non-profit organization. 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