Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Ryan H. Ryan's Quilt of Love *HUGS* TOTAL! give Ryan more *HUGS* Get hugs of your own Current Page Page One Page Two Page Three UPDATE: 8-14-10 We are home!! We got home on 8-14. The Dr. left it up to me if I felt comfortable going home. She said she knows it will be hard with what happened with Kyle. I decided I will be worried no matter what day I go home so we left. Counting the days we were there 47 days...Me,Kyilee and Ryan. Kyilee was so good the whole time. I am proud of her! We met these very nice people who were our hospital neighbors in the PICU and on the regular floor. Their son had a accident. Kyilee got to know them well, the social butterfly she is! She would go on walks when they took their son. She talked to him a lot. I am so glad she is comfortable talking to kids who have things going on that is out of their control. Please pray that she stays the good, Christian person she is. I was so upset the day we left the hospital, We had been there that many days and Kyilee always went to the family kitchen, family lounge on the computers and walked the hall ways. She is good she causes no problems and if she does she only needs to be told once. So this nurse decides to tell her she cannot be in the family kitchen with out a guardian. Kyilee say okay can I finish getting my cereal the nurse says hurry up. Kyilee comes back to the room and is not happy but okay with it. Then Kyilee goes to the neighbors door right next to our room and is talking to their son from the door and this nurse stands up from the nurses desk and says I thought I told you that you can't be in the hall with out a guardian. Kyilee came back in the room crying so hard and shaking! I was so upset. There are kids in the hall all the time. One little kid rode a bile all over and was not careful. One kid ran down the hall. I mean I don't care about other kids but why single her out and make her cry. I can take a lot but when you hurt my kids feelings that's it and the nurse could not even come and talk to me I did not talk to her cause I would have been too made they would have called the behavioral team...So I did tell the Dr. She gave Kyilee a hug and said she would talk to her but I don't trust she did so I am going to file a report against her I don't like to do that BUT this is a children's hospital you don't make a child cry for a senseless reason. I told the Dr she needs tofind a different field of work! It has been a couple days and I am still mad about it! and at the same time I want to cry I feel so bad for her. It is the saddest thing to watch a innocent child cry so hard her tears are dripping on the table cause some idiot doesn't care! We were glad to leave. So far Ryan is doing well I have rearranged his schedule to try to help his bowels take things easier with out pain and gagging. So pretty much all day each hour he is getting something done. Especially now that he is still weaning off of Larazepam. That won't be done until 9-15. He is getting all his bm meds but not going as much as I would think he should he sure has not had his normal. I just want things back the way they were! I am worried about that. I am alone one nurse quit but I knew she might she had been talking about it for awhile before we went to the hospital. Our main nurse is gone...how sad I always wonder how it is so easy to leave Ryan after you care for him every day for a long time I guess it is. I was some what surprised she left I mean when we were there she told me don't worry I am fine I will be there when you get back so that was a huge relief and then she tells me she is going down to part time with Ryan and work another place after I thought about it with all the days she took off plus working at another place there would not be much time for Ryan so I told her to stay at that place. She seemed very happy about that. I am not sure about the other two yet. One time I could really use nursing I have none. I mean common sense there would be a lot to do just getting out of the hospital and the changes. Oh well it is always just us we will mange. I talked to Ryan's case manger for some help but Ryan is too complicated for them. I got about 4 hours sleep last night and woke up to Ryan crying so hard. His weight is 61.4 pounds he has lost weight I looked back and he was 70 pounds when we went to the hospital. {6-30} I hope he gains it back I put his shorts on to come home and if he could stand they would have fell off..zipped and all! The Dr has cut his water flush down to only 2 a day and less 125 mls. He was getting 4 150 mls. I am worried his bowels will not get enough water. Dr said according to his weight that's all he needs. He takes Senna, Miralax and suppository every day. His belly is flat, his incision is all healed up and except for the stitches poking threw it looks really good. I am so grateful and thank God! All the while I was there with Ryan the memories of Kyle came flooding back and I would cry and I wonder why didn't this surgery work for Kyle I am so sad but yet so happy that it worked for Ryan. Tearing at my heart! I decided not to do the brain surgery for Ryan the neurologist told me there is only a 33% chance of it working...I was not told that so that is not worth it to me. Since they raised two of his seizure meds Banze; and Felbamate in the hospital he is doing ok he is maybe having 6 a day and spread out but he is also on Larazepam so we will see when he is off it. Please pray for us there is so much more on our plate. Thank You God Bless, Jena and Ryan UPDATE: 8-13-10 Well good news we get to go home tomorrow!! {Aug. 13th} after 46 days! I am happy but nervous and scarred for Ryan...We were going to be discharged to the RMH for a couple of days BUT all of Ryan's stuff is at home and I don't have med's for him for a couple of days. I will just go home easier to care for him there. The Dr was trying to be helpful at that anyway. I did get a little ticked at him. He asked how Ryan was and I told him he had been crying and gagging and had not had a BM. He made a shrug and a 'Oh geez there is always something" face so my trust is gone with him...I will try not to have any appointments with him and when he asks now I say he is okay...nothing like making me feel stupid...Don't want to know Don't flippin' ask then! Then Health psych came in and I had been talking with her once a week since we have been here and I talked to her about Kyle when he left so I trusted her OR at least I thought I could! I asked her not to tell the Dr some things and he came back a few minuets later and talked about the same things I talked to her about Ugh! During the morning after I told the Dr about his crying etc...Ryan had went to sleep so he said to me I want to come back when he is awake and see how he is...I KNOW he did not believe me which ticks me off Really??? why would I lie about that??? So when he did come back he asked the nurse if she seen any crying thankfully she did and said yes...then when he came in to see Ryan he started crying so YEAH! I could say a lot worse but that would not be nice! We thought Ryan had staples in his belly 3 of them but it turns out it is very strong thing and stiff sutures to hold his belly together that one came through and they just cut it off and can't do anything about the other two until they pop through...Ryan has been gagging so hard with his water flushes goes in his tummy through is G and comes out his mouth and mucus too poor boy...Gave Zofran I say mask the problem...don't figure it out...The nurse was in here and witnessed it thank goodness! Please pray for Ryan that this awful horrible bowel stuff never happens to him again... God Bless, Jena and Ryan UPDATE: 8-9-10 Hi, Today is Aug. 9th...We have been here 43 days. Doesn't seem that long. Ryan is doing better! He is almost up to his home feeding schedule and we are trying his water bolus today that did not go so well. He gagged and had dry heaves so bad he had tears. I have been telling the Drs about his gagging but so far no one has taken it serious. I do because he is not a gagger...never has been. He has been having so many seizures. One day it was almost consent. His lungs been iffy at times. I hope he is not getting a respiratory infection. Bowels are good!! PTL! God Bless, Jena and Ryan UPDATE: 8-1-10 HI Ryan was doing okay and we were getting close to going home. He was getting his Larazepam and Methadone lowered. He was starting his home feeds and then his bowels stopped again. They are full of air on July 30th. On July 29th I thought something was up he just was not right and his stomach was a little bigger then on the 30th his tummy was huge and he was in severe pain crying, an gagging and then he finally just shut down and went into a depression like and went to sleep to hide but his heart rate and blood pressure were high even when sleeping...This poor boy has been through so much...I just can't believe it! Why him, why us? Today, Aug. 1st he has been better even smiling his heart rate and blood pressure were lower until this afternoon then he started going high again and crying and his belly got bigger. He did go tot the bathroom a couple of times after a enema. We are getting air out of both his G and J tubes. Please pray that Ryan heals and never has to deal with this again and that the Drs know what to do to help him and that we can go home soon. God Bless, Jena and Ryan UPDATE: 7-25-10 HI, Ryan is doing better...He has been doing trials off his vent during wake hours..he always has it on during sleep...He has been doing good with that...He gets his Methadone every 8 hours now instead of every 6 he still gets Larazepam and Morphine when needed...but Drs want the nurse to try Diazepam if he is in pain see if that helps so today he has had pain and crying hard guess what?? The Diazepam didn't help...so had to use Morphine...not sure what it was..but he was just like he was in severe pain all his pain scale...except grinding teeth...he did have a xray the other day and he has a bunch of gas in his bowels and the pulmonary team called GI to look at him and they said he was being fed too fast and that he should be increased on his pump rate by 5 every 12 hours...I kept saying that I don't know why surgery thought he could be increased so fast like everything should just be normal again after his bowels just been through a war...Ugh!! I would think that was common sense....GI also started him on Erithromycin to keep his gut moving and it bothers his stomach he is gagging more but not enough to cause a problem and I hope it don't....He is getting more air out of his farrell bag but he does that at home too...but every one here don't listen so I just let them think that way...and maybe it is helping...He has been having BM's but I see them becoming less...I hope it is cause he is at a slower rate and not cause there is a problem...He is also on TPN...Hope this works...he needs to put weight on...You know as I type this it reminds me of typing almost the same thing when Kyle was so sick I just get sick to my stomach....I have realized that all the worry in the world is not going to change things and if Gods decideds to take my/his child then thats the way it will be and no amount of worry will change that....I also realize that I am human and no matter how much I tell myself not to worry ...I worry and I pray and thats all I can do ...Becasue in the end it will be Gods will...I may not like it but it will make me stronger I have learned this from Kyle and my faith will be more and I know one day I will soar and see my Kyle as I walk through Heaven's door... God Bless, Jena and Ryan UPDATE: 7-20-10 Hi, Yesterday and today Ryan had smiles and except for more seizures he was doing okay. Well then at about 8pm today{7-20-10} he went threw a major withdrawal his legs were stiff,toes curled, crying very hard, heart rate was in 180's and respiratory rate was in the 50's. He was shaking and sweating. It was awful to see. He did this many times even when receiving meds for it. He got 2 doses of morphine, scheduled larazepam and methadone and 1 extra dose of larazepam. He is finally asleep...I myself would be drooling in a corner! We are walking on egg shells! I don't want to wake him and I don't want to leave the hospital yet until I am sure he is okay. Drs also shut his feeds off. Just not too sure what it is I hope it is not his tummy...he was acting the same way when I brought him to the hospital in the beginning of this journey. I was scarred it was his bowels and I know I will be scarred of his bowels for the rest of his life...What a awful place to be put in and I question why God would let this happen again???? The memories of Kyle came flooding back, the sick,sick feeling, the lost hope the worry....The most horrific pain anyone can go through and I had to suffer through it again only this time I am blessed this time surgery worked, this time he was taken to the hospital soon enough,this time the out come was a happy one! This time I did not have to bury my child and I try to understand I try to 'be happy' for Kyle for he is no longer suffering but....I am.... So while I am so, so grateful and so blessed that God has let Ryan spend more time with me I am so hurt that this was not the turn out for Kyle...and I wonder why? I am sad and happy ...That will make your day! I pray for me for one day I will understand. Ryan got his stitches out today and steri strips put on and so when he was arching and breathing hard and stretching his tummy I was so worried he would break his tummy again...OMGosh many emotions during this journey. It's so hard. I cry, I laugh, I am just blah, I am tired, I can't sleep, I can sleep, I have no energy, I have energy, I am hungry, I am not hungry, my head spins, my head sits still, I clench my teeth, I relax, I have a headache, I don't have a headache, I worry ...I always worry...I worry about home we have to move...we lost our home when Kyle left I lost my income so the bank would not lower the payments so we lost our home...really?? just one more thing one more piece of crap dropped on us! Kyilee is here with me and she has been good for the most part! She keeps me sane and keeps me busy and my mind off of things...It's great! God Bless, Jena and Ryan Please pray for Ryan he is in lots of pain he had a second bowel surgery last night at 10:30pm and was out at 12:30am his bowel came through his incision and so they had to put it back in and sew him up they used stitches this time and had to use skin further away and so he looks like he has a hill down his tummy. They had to up his Fentanyl and Midazolam drips x 3 plus he is getting Morphine and Larazepam. He is finally sedated enough....He has a fever between 99-102 we are hoping it is a surgery fever but they took blood, urine and trach cultures just to be sure. His HR has been in the 140's-150 his sats 95-99% his RR has been 30's-40's and his BP is slowly going up. I am hoping he feels much better tomorrow! Poor boy! God Bless, Jena and Ryan UPDATE: 7-16-10 Hi, Today is July 16th ...all ready where has the month gone? Pretty soon summer will be gone and we will have to put up with the nasty winter again....I just hate it! Ryan is doing okay today they have taken away his Midazolam and have lowered his Morphine even more but he can get a bolus of morphine when ever he needs it and he has needed it. His HR and BP go up and then when he gets it he calms down. His incision is healing well PTL and next week the stitches come out. He is puffy but I think it is getting better in that area too. He has had to have his vent rates up and down and today we tried bringing them down again. Will see what tonight brings. He had a fever yesterday so they started antibiotics again but then stopped them cause the fever went away but did take cultures of his trach, PICC line, and urine and also a chest x-ray so we will see what anything shows. He does have atilectius. He stopped peeing so had to have his foley back in after being straight cathed 3 times. Me and Kyilee have been here every day and she is doing great! She worries about Ryan so much. His poor foot was so swelled but I do believe it is on it's way to getting better. I have tons of pictures on my facebook. God Bless, Jena and Ryan UPDATE: 7-11-10 Hi, Wow! Last night was a rough night! Ryan kept crying from 8pm-2am. I was rubbing his head, trying to hold his head close to me I was so worried about him and just sick that he was in so much pain the nurse was giving him morphine,larazepam ,diazepam ,Tylenol,you could tell he was drugged bad but he still had pain and still cried I felt so bad for him! I finally insisted that his feeds were stopped I had had it by this time and no fault of the nurse she was trying who by now was calling the Dr. cause she ran out of med's. When I seen food coming back out his J that was it. It was only a little but enough to know there is a problem. His belly was firmer. He had not pooped in 2 days even with Senakot,Miralax and suppository. So the Dr comes in and says it is okay to stop his feeds I don't think surgery will mind I said They better not cause he is getting full and nothing is coming out just where do you think it is going to go?? I said I never see them they come so darn early when I am not here and then I don't see them the rest of the day ...ever! I was tired, worried and PO'd by this time! They also turned up his Fentanyl drip and he finally went to sleep and gave him a enema he didn't care what they did to him....LOL and so I woke up Kyilee and we went back to the RMH this was 2am...She had gotten a migraine earlier and was crying and trying to throw up. I gave her a med she takes for that and she finally fell asleep and slept a long time at when she woke up it was gone PTL I hate them stupid things! Her face gets beat red on one side too and she didn't even want her bear....now that's bad. I came back this morning and Ryan needed more morphine during the night so the Dr came by and turned his Fentanyl up more and said to give him mineral oil too. During the night he had 2 huge poops bed fulls I feel bad but I know he needed room in there. Dr said the incision looks good and he will be done with antibiotics on 13th. He had a fever yesterday but kept it down with Tylenol and he has it back today again so more Tylenol they think it is from surgery trauma. Hope so!Even on his med's he is still awake and arching, sometimes he signs 'No' and his HR has been high his BP is high then low his SATs drop once in awhile and his lungs are quiet but he is on his vent and has o2 available if needed. His foot IV went bad his poor foot is all swelled up and for some reason his top lip is swelled. His potassium is low so he needed a bolus of that. He really cried when laid on his Left hip so we are not doing that again...hope everyone pays attention to that in his chart. God Bless, Jena and Ryan UPDATE: 7-8-10 HI, After 3 hours and Lorazepam ,Midazolam ,Fentanyl and finally Propofol the PICC line is in! Wow this was hard....Took the x-ray to check the PICC placement and had to pull PICC back 5cm and showed he has pneumonia in his right lung.PICC team said that was the hardest PICC they put in and next time he will need sedation right away or a port. Dr was not keen on the port idea...don't blame her risk of infection. Took more staples out one morning to let drain more. He may have to go back to the OR to put a stitch in. Treating him for infection. He is in more pain and needing more pain med's. His belly is bigger then when we first started this journey. We measured from the beginning. I stayed late one night I was worried about him! Well Ryan is going to have surgery tonight {July 8,10} his bowel is threw his incision and so they need to put it back in. Pray all goes well. He is still on antibiotics and his infection looks better. God Bless, Jena and Ryan UPDATE: 7-4-10 Ryan's stomach is bigger then yesterday 70cm it was 67cm. His Incision is redder so he might have a possible infection. He has a fever and in more pain. He has had to have Larazepam, Morphine and Tylenol today at times. Will have to see what the Drs say. God Bless, Jena and Ryan UPDATE: 7-1-10 This is hard to wrap my mind around...Ryan started to get sick on June 28th in the afternoon, well he has not been 100% for a while now, but he was crying and in pain so I vented his G-Tube and tons of bile came pouring out ...like a river with some stool in it. Then he seemed okay, I started his feeds had to stop them a few times but was able to start again and continued to vent him and the bile still was coming out I did put some back in but it just came back out. We went through a few Farrell bags. Then at 6am on the 29th he was in more pain had to stop his feeds. Stomach is flat and soft still but I took him to the ER just for a x-ray to be on the safe side. They did a x-ray and his bowels were backing up and so they called Madison and talked to GI and they wanted a small bowel follow through done so our local ER did that and x-rayed him for 2 hours and the barium did not move so they transported him by ambulance to Madison children's. Thanks to my older kids and husband they brought the things me and Kyilee needed to New London hospital and so we could leave from there so we got there shortly after the ambulance did. Ryan is in severe pain by now. He did get morphine at NL but it wore off. We sat in UW ER for hours while they decided what to do and to talk to everyone involved. Surgery was very understanding and decided to do a CT scan Thank goodness! I know they do not like to CT kids but when you have kids who can't tell you what is wrong then there is no choice in my book. He was admitted to be watched then they decided to do another small bowel follow through and said that he has a partial obstruction but things were still going through so he will have bowel rest. He still grinding teeth, he arched non stop, even on pain meds. His BP was very high, his HR was very high and his seizures were more. Then all of a sudden the surgeon comes in and says I think he needs surgery to see what is going on this is day 2 of severe pain and leaves. I tell Ryan's nurse she had no idea so she calls the resident and he says yes but not sure if it would be that night or in the morning so me and Kyilee go to the cafeteria and just as we get there the nurse calls and says our surgeon is there and wants to talk to me so we hoof it back, it's a long walk, and he says I think I need to take a peek tonight so I'm like okay! They took him to surgery it was a bout 1 and 1/2 hours and they were done...Ryan's bowels had twisted and herniated around his J-Tube the Dr fixed it said his bowels all look good! PTL he said we did the right thing! The amount of relief I felt is indescribable it was like death lifted from me and I could live again and then I cried not because I was about to loose him no because I was so happy and grateful to God for letting Ryan stay with me longer. I so wish this would have been the ending for Kyle and he was on my mind a lot and I cried for missing him and wishing things would have been different and that I will one day I will understand why God took him so soon but so happy that things were so different for Ryan and that it could have turned out very different. I am grateful to God for guiding the Dr's,nurses and everyone involved. We had a awesome nurse who keep telling them there was something more wrong! Ryan is having more seizures and I am pretty sure he will not be having is brain surgery on the 9th as was planned . This was not. Please pray that Ryan continues to do well and NEVER has bowel issues again! Thank You God Bless, Jena and Ryan UPDATE: 6-23-10 HI Ryan has been very stiff lately. His whole body. He has been grinding his teeth, crying. Not sure what is wrong. He has been having more seizures his eyes are red. Maybe having seizures we can't see. He started summer school. Doesn't do much. Listens to the kids in the gym play with the balls. Lays down. Then after it is done he goes swimming and he relaxes and is okay until we get home. I just don't know! I want him to work on communication but there seems to be no program for him for that...Well he only has a few more days left and then he will be done cause of his surgery. Please pray that his surgery is goes fine! God Bless, Jena and Ryan UPDATE: 6-17-10 HI, Seizures SUCK! Ryan has okay days...10-20 but then he has days when he goes nuts 30-70! I feel so bad for my baby boy! Life is hard enough for him being born with a rare brain disorder,Bilateral Open Lipped Schizencephaly, and now a rare seizure disorder, Lennox-Gastaut Syndrome, plus all the secondary Dx's... Man he should buy a lottery ticket! Just kidding. He is up to his full dose of Felbamate =about 1600mgs a day, Banzel=400mgs a day, Valporic Acid=about 600mgs a day and Clonazepan=0.5mgs 2 times a day plus he gets PRN Diazepam =5mls as needed up to 3 times a day and Diastat=10mg rectal gel for clusters or over 5 minuets. Plus his other meds for 'Other' things! This poor kid is wigged out after his meds are given...I HATE IT! So this leads me to the appointment at the Special needs clinic in Madison where we seen Neurosurgery, Orthopedics, Rehab, PT and OT. PT said his dystonia was much worse sitting in his chair then 2 years ago when he was there, he is some worse laying down but he is a layer and likes it but he also has to sit too. He also has dystonia moments when he is laying down but of course he didn't show it there...figures! Then OT came in and she didn't say much, took measurements and asked about his wrist splint and that was it. Guess all was good. Orthopedics was fine his back and hips are all good Yeah! We went and had a x-ray done the day before. Possibly can fuse his ankle/foot to one position but only if we cannot keep it in his AFO and have tried everything...I'm not in a hurry only if he gets sores and something HAS to be done. So on the Ortho front it's all good. Was a quick Hi how are you see ya! Rehab was not happy with his broken leg in May 08 and wants to do a bone density test and possible IV something 4 times a year we would go to the infusion center. Also they were thinking of putting him on Artain for dystonia but it causes the bowels to slow down and since he just got over a Illus we did not want to do that. The rehab Dr was grateful for all Ryan's info I write down for each appointment he was 'lost' there was so much. He was glad that we were going over to the brace place for new AFO's I told him I can't get Ryan's feet in his anymore and they leave sores if we force them in. He sent a script over to them...love computers! Also PT was going to see about sending a script for knee immobilizers for in his stander to keep his knees from falling out. Then Neurosurgery came in and they said we cannot go up on the baclofen he is at highest dose and he has more dystonia then spasticity. There really is nothing else but the baclofen pump well we all know where that took us a year ago and Dr looked him over and said the only place is his upper left front shoulder but he would have to have a tissue expander first. He did suggest a brain surgery that might help his dystonia and will help his seizures but had to talk to the team of Drs we just saw to see if they agree. He came back in and said they all agreed that the only thing that would help him is the brain surgery called the Corpus Colostomy, they cut a bundle of nerves so the seizures can't travel from one side of the brain to the other and therefore they will be less and not as forceful he will still have them. He all ready looked at his MRI scan and said his brain was right for the surgery he had to look at his EEG's to see if they read the way he thinks they will and if they do he will be a good candidate for the surgery. He also has to go in front of the Epilepsy committee and they all have to agree this is the best for Ryan which consist of 15 Neurologist and Neurosurgeons. Dr called me himself and said they all agreed unanimously that this would be the best for Ryan. GULP...LUMP,BREATH just BreATH ...quiet for a second or two even thou I had been researching, talking to parents of kids who had this done, getting anyone's opinion,praying, telling myself you owe it to Ryan to try to help him, the meds will eventually stop working we will have to raise them I don't want him to be a zombie or loose him to SUDEP.Yes.... all this went through my little brain at record speed and my mouth said 'Yes' to the Dr. After we hung up my heart pounded, I worried OMGosh did I make the right decision? am I doing the right thing? Would if he is not the same after?, Would if he dies?????? I trust this Dr and wouldn't you know it he is leaving...how dare him! but I guess we all deserve to retire...Ugh so I want him to do the surgery. It's hard for me to trust someone and having the new Dr do this I think I would cancel. The date was set for July 20th but he called a few days later and set it for July 9th that's better less time for me to think about it and worry and more time for after care with this Dr just in case...Okay back to the special needs day we went over to the AFO place and Ryan was casted for new AFO's and Kyilee picked out Bugs Bunny for one brace and Scooby Doo for the other. They will be done on the 30th. I asked about the knee immobilizers but then forgot and we were leaving so I will ask when I go pick up his braces. He can't go in his stander with out his AFO's anyway. One of the nights we were in Madison at the RMH Ryan decided he was going to pull his trach 4 times Ugh!!! He couldn't breath dropped his sats to 64% the lowest...I made a appointment to Pulmonary. Where is the trach you were going to order? Why is it taking SO long? This is getting to be dangerous? I was so upset...Why is his stoma so huge? Why don't someone do something?! They said another Dr. took care of the order so this Dr calls our DME guess what?? the Dr. NEVER even ordered it! WTH???? Are you flippin kidding me????? Here me and Ryan sit and wait for what?? for people who don't give a damn!!! They suggested I loosen the trach tie so the trach sits in better Guess what? Don't work! He pulled his trach out at home, he dropped to 41% the nurse did not know what to do THANK the Lord I was here or he could have died! I came in his room and shoved his trach in. She was looking for leaks and not looking at Ryan and that he was in respirtorary distress he was blue He could not breath!! Once the trach was in and the vent working right he was okay. He drops very fast when he can't breath. He did that when he went into respirtorary arrest before his trach. He does this many times and sometimes I have to bag him back up and give him o2...Wow! Where's my degree?? how about the big bucks the Drs,nurses make for ME to do it all????? I am angry so angry! Ryan gets to go to the dentist on the 30th too while we are in Madison for a cleaning. I'm glad I could get it on the same day as I am there anyway. Me, Kyilee and Ryan will go. Looking forward to it. Please PRAY that Ryan's brain surgery goes well and he has no problems... God Bless, Jena and Ryan UPDATE: 6-1-10 HI Ryan was in the hospital for 7 days in May, The 24th-31st for a Illus caused by a virus. We tried doing everything at home stopped feeds, Pedilyte full then half strength, rectal tube, Senna,Miralax,sups. It was crazy and the Drs did not take it serious I was so upset cause of what I went threw with Kyle Upset and scarred. After 2 weeks at home and 3 trips to the ER, one trip to the family Dr he was finally admitted THANKS to the GI nurse! He had tests done and did not have a blockage but tons of air in his small bowel and no one knows why or how to get it out. I had many cries and tons of worry! No parent should have to do all over with another child what sent one of your children to heaven and Drs NEED to understand that! He also had pneumonia from our family Dr but the pulmonary Dr said no whatever! They put him on Omnacef a horrible antibiotic! turned his "out puts" brick red and stunk OMGosh it made you gag. He retained urine and had to have a IV. We came home on Flagel thinking maybe he might have too much bacteria in his small bowel. He is okay with this now but still is having issues with BM's but we get on it right away. Dr said it will take a long time to heal. While Ryan was in the hospital he pulled his trach out 2 times AMEN he finally did it in the hospital NOW they know I am not making this up!! So they decided to order him a longer trach told me when it comes in they will call and I will come there an have it put in....Okay fine...looking forward to it. It was a holiday so couldn't order it and didn't have any there. Going with the Bonava trach. They only deal with Shiley's. Was a long stay and glad to be home! Ryan needed o2 on the way home of course...but he was fine in the pulmonary clinic...Wow! God Bless, Jena and Ryan UPDATE: 5-17-10 Hi So I heard back from the Dr's nurse 7 days LATER! She said she thought we stopped the Felbamate Ummmmm??? no and I repeated my email back to her I am not sure how much clearer I could have said it! Well then she was irritated cause she had to call the Dr back....I always feel bad but I know I really need to stop that. I cannot take on feelings for mistakes that others make! So she asked me how his seizures have been and I said that they are better he is still having drops ,not as many and they are harder now ,he is having laughing and a lot of absents and she says.. Are you okay with that? I kinda paused on the phone and thought Well hell no I'm not okay with that! but what else can we do? I'm so afraid to say anything cause they just want to take him off his meds or try to say something else is happening but I bite my tongue sorta speak and said... Well I guess I will have to be! So then she called back and said that we can keep him on the Felbamate and keep track of his seizures....yep we do every day! Then she called back another day and asked how he was doing...I said fine I am afraid to say anything and we were going to see the Dr in a week. Fast forward to the appointment.....We quickly figured out the Dr had no idea of what we have been doing. I am thinking the nurse was only telling him some of what I said and wrote...Ugh! So I explained things to him and he was glad that the Felbamate was working and he added his Banzel AM dose back in. Lets hope that helps a little more but we have a ways to go up on the Banzel. He also said we could use the Melatonin for sleep. He did not think that 5 hours of sleep for Ryan was bad but I do I think a 10 year old needs more He said that Felbamate makes a person more alert. I explained his 'new' absent seizures he is having Dr called them Atypical Absents. He also raised his Diastat and Diazepam doses and said we could give Diazepam a half hour after the Diastat if seizures didn't stop. He has many absents especially when swimming he will be kicking his legs then when he has a seizure he stops kicking and starring and then when done he starts kicking again like nothing happened. Oh and his eyes dilate. He weighs 64 pounds..last week he weighed 65 pounds not sure where the pound went but will have to keep a eye on that. Maybe the meds?? He got his blood taken and has to have it done once a month for 3 months, then every 3 months then every 6 months for his Felbamate. Ryan has been sick it is strange his HR has been up more then normal. He has had low grade fevers. His lungs are good then junky then good. He feels very hot but then has the same low temp or normal temp. He has little tiny red dots all over his legs ,arms and some on her face... Ugh! Not sick enough to go to the Dr but enough to know something isn't right...Well we got blood taken so that should tell if anything is wrong...I hope. Poor boy is sore in his diaper area I have been airing him out and that is really helping. I hope he heals up fast. That is awful to have that. Ryan has a appointment at the special needs clinic on June 9th he will see Neurosurgery, Orthopedics, PT, OT, Speech and Dietitian. On the 8th he has to go in for a x-ray so Ortho can look at it. Will be a long day. Hopefully we can get him in to get new AFO's. His feet are actually getting too wide. We will stay over night. I have been putting the vent bag on him more his tummy seems to be causing problems. I hope there is nothing going on with a hernia/reflux again. His teacher has been coming and doing things with him. He likes it she dose a lot of good things with him. He has been swimming a lot and I watch my granddaughter on the swim team...she is awesome. God Bless, Jena and Ryan UPDATE; 5-1-10 Hi, Well the Zonegran didn't work...Dr didn't like the side effects. So off he goes...We went to his Neuro appointment and we talked about all the side effects of Felbatol decided to try it. This is the last drug if it don't work I don't know what. He said to drop one dose each of his Banzel,Clonazepam and Valporic Acid so he does not become toxic. Will take 3 weeks to get up to full dose. He had to have blood work done and that came back good. He will have to have blood work done a lot because of the Felbamate can cause Aplastic Anemia.. He did talk about brain surgery but I don't want to even put him through that...His weight was 69 pounds...How is he gaining weight???? must be meds? So I e-mailed the Dr and asked him what we could do for sleep cause Ryan has been awake and also if he is having more seizures because he dropped his other meds one dose each and added the Felbatol until he gets use to it....He said ready? take him off of it...ummmm what??? we are not even up to a therapeutic dose yet...Nurse said well I don't know he said take him off...I told her I did not feel comfortable with that since this is his last drug and that we are not even up to the level yet. So I e-mailed him again and told him this and asked about the VNS and other things. I asked his nurse to forward it to him she was a little grouchy about it and I felt bad but then whatever! this is my son and we need to figure this out! She said she always e-mails them to him but then told me she tries to lake it as simple as possible for him What??? he is a Dr! it is his job not to be simple ...Ugh!!!! Of course this was Friday and I didn't hear anything. They also want him to go back to Neurosurgery and Rehab so I heard from Neurosurgery and they are going to talk to Neurology,,,Why the heck is it always so hard to get help for these kids?? I did not stop the Felbamate because he did not get back to me with answers to my questions and if we decide to keep him on it I don't want to have to start over again...Oh and he is still having seizures...He did say we can use the Diastat for cluster of seizures,,,that's good!....okay enough. Ryan still goes swimming ...he loves it! He has started kicking his legs. He is so happy when he does...He has a great nurse who takes him swimming! He was working on his switch and did great....It is so neat to see him do something everyone says he can't...oh well we get enjoyment out of it! I joke that Ryan is bilingual...He answers questions by signing yes,no and I don't know in Spanish and Chinese watching Dora, Diego and Ni Hao, Kai-lan! I love it! Missing Kyle..... God Bless, Jena and Ryan UPDATE: 4-15-10 We started Zonegran for Ryan's seizures...He is taking 100MG at bedtime and in 2 weeks will go up to 200MG at bedtime if he tolerates it well...His seizures have been less! only 20-low 30's at times he jumps up...they have been different too...seems at times more absent ones and longer he still is having the drops but are quicker and harder...We will have to see. When we first started the med he had a terrible time he was so stiff he could not be bent, he was Hot and so hot he got a fever, he did not sleep for 2 days we tried Diazepam and Tylenol did not work and usually Diazepam works in 4 min...we timed it once..lol the second day we gave Diastat and he calmed down, slept and was relaxed and smiling when he woke up PTL! Ryan is finally done with the antibiotics...everything is back to normal no more orange pee! His stomach was flat today too...His nose is still full...His blood draw the Carntine level was all good! I have a video of Ryan watching the Lynda Randle DVD and he is just drawn into it...Learning about Jesus through music is a good thing! Since Ryan loves music... It is on my facebook page. Well we go to Neurology appointment on April 15th but so far that is it...Ryan has been swimming and in his stander he loves it... God Bless, Jena and Ryan If I Could Have Just One Wish..... I'd Wish For One More Day With Kyle, I MISS you my sweet boy..... Revelation 21:4 UPDATE: 4-4-10 Hi, Well Ryan got sicker after we came back from the Dr...of course...right??? So I called them back course they say his trach culture showed nothing but normal stuff...Yep that's why it smells and is yellow I wouldn't be so critical but I know the lab there if they don't see something right away they don't grow it...So they put him on Rifampin and Sulfa...So nice that his urine, stomach juices and stools are orange....Oh well good color and hope it helps! This morning his nose was just full of yucky stuff had to suction so much out...He has been just 'blah' and sleeping a lot. He has been having issues with his stomach being larger then usual but not bad BUT since my Kyle had so many problems with his bowels and that was the reason he passed away I get very worried! at any little thought that something might be wrong...So I have been putting the vent bag on have not had any air out been trying the syringe not much out he has been having BM's BUT so did Kyle...I do not trust that way of thinking at all!! Then later we got 3 bags of air out of his G-Tube and a bunch of stomach juices and his stomach seemed better PTL!!! I would think this was because of the antibiotics but he started this stomach stuff before he was on the antibiotics in fact it was one of the symptoms I told the Dr about. If it happens to keep up we will go to the local ER for a x-ray just for peace of mind and Lord knows I need that! His sats been lower then normal and he has had to have o2 some nights...His seizures continue but do seem less since he is sick I know weird huh??? usually they would get worse but not for Ryan his body just does the opposite of everything....He only had 35 yesterday he has had up to 79 in one day...His weight is 66 pounds..not sure if I mentioned that in the last update. I asked about his Echo but still did not really understand other then the fact that it was a fake problem and don't need to do anything but I talked to the nurse and I don't think she talked to the Dr. I think I might just call there and try to find out myself..Ugh!!! don't they understand a parent just MIGHT be worried??? especially since his HR has been higher then normal for awhile now and yes even before he was sick and when he has nebs.... God Bless, Jena and Ryan UPDATE: 3-28-10 Hi, We made it to the trach clinic...That is always a long day but at least the Dr covers everything....ENT- He did the bronch everything was fine...I was happy about that so he thinks Ryan is panicking when is trach is out so we just treat him like he does not have a separation when it comes to trach changes....I got to look at his trechea it was cool! His ears were fine...he doesn't know why his trachs are not holding the cuff after 5-7 days they should last 2 weeks. Said to try not to inflate the cuff when he is off the vent maybe it's too much stress on the balloon. So that's what we will try. Then it was to Pulmonary and she did a few changes changed a couple vent settings, changed his Albutrol to Ipatropium. Did trach culture,drew Carnitine level and has to check with Cardiology about echo results. She thinks by the report that it means one side of his heart is not pumping the blood the right way I mean it is pumping but not right...but she wants to talk to the Cardio first..I am upset about this there were no recommendations about this report...no call to me....WTH??? So if I don't hear anything on Monday afternoon I will be calling... I mean how could this have been missed??? Even if the answer is we are just going to watch this I would have at least known something....He has been on the same Carnitine level since we got him so got a order for that blood test well the lab people for Children's all ready left at 4:30 are you kidding the clinic was still open! So they said oh well just have it done when he gets a next blood draw it will be in the system and they also gave me a written order in case I get it done by us...so I got to make another appointment and the receptionist says oh the main hospital lab is open you can go there so I do get it done and over with so I don't have to remember to do it an I wanted to know the level any way right away not when ever so they tell me that it takes a week since they have to send his blood all the way to Utah to have it checked..What?? are you kidding me?? a big hospital like that and they can't check it Wow! So if I would have waited tell who knows when it would have been even longer to get the results what a bunch of crap! Dr took a trach culture because it was yellow and thick and he has a low grade fever have to wait on that. So the Keppra didn't work we were on the first week of dosing ...low dose and he started having a bunch of shoulder jerks I mean big, noticeable ones and longer seizures and different ones so we Dc'd that one and in 2 weeks will start either Felbatol or Zonagrene. He wants the Keppra out of his body before starting another and to see if the new stuff goes away and yes it did .... This morning Ryan has a fever...nasty nose...nasty trach...lungs junky...wonder if his culture will grow anything?? besides normal flora...I suctioned so much thick crap from his nose I didn't think it would ever end! His breathing rate has been in the 50's today so I put him on his vent to help him out...Sure hope it is not pneumonia. I had no nurse last night and had to be up later and get up with him his sats dropped and no nurse today. Then being gone for 3 days I don't sleep well and so so much running around .... I am tired. I have a nurse tonight so I hope I sleep better... God Bless, Jena and Ryan UPDATE: 3-21-10 HI, Ryan had 30-50 Tonic seizures during his vEEG the findings were severe encephalopathy and severe seizure disorder with poorly controlled seizures consistent with Lennox-Gastaut Syndrome. Wow! this was not expected...I know he has many seizures during the day awake hours but they also say he is having a lot during sleep...Dr said these are bad and we need to get them under control. He is on Valporic Acid, Banzel, Clonazepam and now we are adding Keppra a high dose of 1000 mls a day w. To see if that helps. We go back in a month and if Keppra don't help then ill take him off and try Felbatol. I am relived to a point that someone finally found what was wrong even thou LGS is a horrible Dx at least now we can move forward and help him. Ryan even had seizures for the Dr! So he got to see them! That was a first...LOL I feel so bad that he has been dealing with all this and I just didn't know...Just makes me sick. The little medical information we got when he was adopted was sad and I thought it was a lot...One hospital said they could not release his medical records to me even thou I was his adoptive mom...so I am sure there was a lot in there I SHOULD have known...something needs to be done about that bright idea! He had 6 baby teeth pulled and a cleaning the dentist said there was not as much as she thought so he was in and out! He had to have vent setting changes while under and when out of recovery because his breaths were going down and sats and he had to have 2 doses of morphine but then was fine just kept giving him Tylenol for a couple of days. Praise God everything went fine! Now next week he goes to the trach clinic which is Pulmonary, ENT, Nutrition and RT. I have to talk to them about a few things...Will update then.. God Bless, Jena and Ryan UPDATE: 3-14-10 HI, Ryan continues to have many seizures everyday...Me or his nurses cannot take our eyes off of him because he has so many and if he is close to something he could hurt himself....We did the vEEG for 24 hours..still waiting for the results...I hate waiting but at the same time I know Ryan's EEG's are hard to read...I will be upset thou if no one has even started reading it yet since today is the 9th and this was done on the 2nd...We had a appointment with the Neuro on the 18th but he cancelled Ugh! hate that!! So now it is made for April 1st. I won't wait that long for results! He also had another EKG done cause Banzel,seizure drug, can make his heart out of rhythm and guess what? have not heard results from that either! Ryan also had a Echo done and stomach x-ray have not heard from them either...I guess no news is good news BUT still you would think someone could call and say 'Hey it all looks good" Put a parents mind at rest...Guess I am asking too much...I tried to show a resident Ryan's video's I did of his seizures...She was not all that interested I was a little ticked. I spent all that time 'Catching' his seizures...Drops,laughing and absents and she just didn't give a crap...She couldn't even watch a 2 min. video Are you kidding me!??? She kept looking away and then missed it! She said I can see he all ready has a abnormal EEG... oh really??? I said You do know he has Schizencephaly right?? I just want him to get help and so this was important to me... I also have been writing down with nurses help every seizure I see he has had as many as 53 in a day and as low as 13 I am sad our medical so called professionals are way less then! I did get to talk to a resident lower on the list and he was really interested and watched them with me...The Dr who BTW was not the Dr we see who was suppose to be there was not so I was ticked about that I would have rescheduled. The Dr that was there was nice but seemed to not really care either...Good team there! I wanted the resident who couldn't watch the video's to look at his skin she nicely{sarcastic} informed me that she is not a skin Dr she is a brain Dr, or I wanted to have a peds floor Dr look at some skin issue Ryan has but she said oh no can't do that you can take him to your regular Dr when you get home...What!!??? I am there in a HOSPITAL and another Dr CAN'T look at his skin???? Wow....I said then I have to go home make the appointment,get him ready, load him up..he is in a wheel chair you know He is not a kid who I can say lets go and just jump in a car, then take him in for maybe 10 minuets, load back up , come home and unload catch up on everything I got behind on with him...Well then the Neuro Dr came in and ordered a med for it Ryan has the Dentist OR on the 17th Pray that goes all well... On a happy note Ryan has been swimming a lot. His sister bought him a year pass...What a blessing! His nurse gets reimbursed for hers so all is good...He loves to swim...Kyilee loves to swim with him..She is so good to him...I always think of Kyle when we are there..He loved swimming so much...I remember how he would laugh and kick so hard...I miss that so much. Ryan also has been in his stander every day when his nurse is here to help me. He has been working on his switch and playing games with us...It is so neat to see him come this far! Ryan's fish 'Kyle' passed away the other day... Well Ryan is awake...I better get to taking care of him...No nurse today. God Bless, Jena and Ryan UPDATE: 2-19-10 Hi, Today Brenda came from National Seating and Mobility and adjusted Kyle's stander to fit Ryan...she is awesome! He stood in it for 15 minuets after not being in a stander for a year..He liked it until he had enough then started crying...we will do a little at a time and slowly work up to 1 hour...I am so happy he can stand again! We have a busy month in March...Many Dr appointments...The 2nd He has a over night video EEG...hate these nothing is comfortable up most of the night can't leave the room..Ugh! but has to be done...wish they could be done at home...Then the 17th he goes for dental work in the OR pray everything goes fine with that and a Neurology appointment on the 18th and on the 25th he goes for the trach clinic, ENT, has a bronch of his trachea and Echo of his heart...Praise God for the Ronald McDonald House! Pray all goes well for Ryan and there are no major concerns... They have found a home bound teacher for Ryan she was here once ....very nice and Ryan liked her and she did a lot with him...I am so happy about that... Ryan's birthday was the 121th...HAPPY 10th BIRTHDAY my sweet baby boy!! Wow I can't believe he is 10! and so big...I remember when we got him at age 6 he was so small and after his trach he grew so much...he is now 4'6" and 65 pounds..just right...he is so smart we got him a spinner that runs off a switch so he can play games...he loves it we played Candy Land and a Basketball game I need to get Yatzee and Bingo yet...I made game pieces for the Candy Land game to put on his spinner...He worked on his Light Box and he was happy about it all...Finger paints today! We always wait until Kyilee gets home so she can help...she loves playing with Ryan.. I am so blessed that God choose me to be a mom to this sweet baby boy! that of all the kids in this world who do not have a parent that Ryan was the one chosen this would not have happened with out God....I would have never thought to go to Tampa Bay FL...to adopt a son...I am so grateful...I am also so grateful that God chose me to be mom to Kyle and even though Kyle was not far away I never had heard of him and so I am truly blessed to have had Kyle in my life and for that I thank God but I miss my sweet boy SO much! God Bless, Jena and Ryan UPDATE: 2-13-10 Today, Feb. 12, Ryan is 10 years old...WOW! 10...It's hard to believe for some reason....He was 6 and just turned 6 when we got him he was so small...a baby and now he is growing up he is bigger his face is more 'young boy' looking instead of a baby face....it is sad for me if I could they would all stay baby looking. He has come a long way since the day we brought him home...he got a trach which gave him a better quality of life..breathing is a good thing! Then had to have a perment trach surgery 3 years later... So then he grew and grew and is still growing...I learned that this boy with such a awful looking brain is actually a very smart boy sure he might take a minuet to process BUT he knows...he learned to sign 'Yes' and 'No' he learned how to use a switch...he learned what family is...he learned to get to know and meet many people..he learned to laugh when played with and tickled...He learned to trust...He learned to use his eyes better...he learned to really listen when someone is talking to him..He learned to joke around sometimes if I ask him a question he will sign the wrong answer and then laugh...stinker! He has learned to have sisters and a brother...He has learned to loose a brother too death.... He has learned to put up with way more then any child should have too and to accept that this is normal and even thou it is hard and sometimes painful he has to get through it...and he does... God has blessed me so much by bringing this precious little boy into my life and I am forever grateful...I Love You my sweet baby boy...my son..forever and always.... God Bless, MOM UPDATE: 2-1-10 Well Ryan is okay....for now as long as I DON'T remove his trach and DON'T allow him to cough it out! Ugh! He has been not being able to breath with it out which goes against everything the Drs did he had a LTS done in September...they split the trachea and bring it forward and attach it to his skin...that's the short version....So anyway he SHOULD be able to breath with out a trach in...Kyle had the same thing I could leave his trach out all day and have no problems...hummmm??? It is scary to see Ryan turn blue and in distress he arches and panics and is sucking in and out so hard...It is awful to see....then I have to shove his trach in and bag him an then he is fine....WOW I didn't think I could ever deal with the things God has thrown my way.... Pulmonary Dr is going to talk to the ENT Dr and see if they should do a bronch to see why his airway is collapsing..should hear from him on Monday...The other day Ryan laughed for 9 hours he had breaks but short ones this was not his normal laugh he laughed for no reason followed by jerks...So I called the Neuro Dr talked to the nurse who has called me so much in the last few days she said she has my number on speed dial...lol He said there are 'laughing seizures' called Galstic Sezures and to keep a watch and let him know...So he has been having them everyday since the 9 hour ones but not as long....So think I will be calling her again...He also put him on a muscle relaxer called Dantrium for his muscle spasms not sure how this will work...If it makes him too tired I wil stop it....who likes to feel tired all the time?? I tell you this kid keeps my mind thinking all the time...exausting sometimes....But I love my sweet baby boy! He is stable with his weight at 64 pounds now for 2 weeks YEAH! God Bless, Jena and Ryan Hi, Ryan has been doing okay....He had a good report from his MRI...abnormal,still having the Bilateral Open Lipped Schizencephaly... but no changes from the last MRI...which is good! He did well during and after the MRI and we were able to leave that same day! I always like them days all too often we have had to stay with no plans to stay.... His seizures are getting some better...they have slowed down at night and he is still having many during the day but they are shorter lasting...I did some research on exactly what type of seizures he is having and I have come up with Absent, Drop Seizures, Tonic Colonic and possible Partial Complex. The Drop seizures are the most annoying and the most powerful..I feel for kids who walk and have a Drop....At least Ryan is seat belted in and even thou he flies forward and hangs off the side of his wheel chair or hits his hands,arms or head on something if not kept safe he does not fall to the ground where ever he may be at...how sad. He is off the Keppra and on the full dose of Banzel now...One thing I have noticed is his leg cramps are coming back more and more...he is crying hard again, his legs, feet and toes are stiff and rock hard. He will bite his hand and fingers...how sad to have to go through this again...I am not sure what is up was the Keppra stopping this? Is the Banzel causing this? Has he out grown his Baclofen and Clonazepam doses? Dose his vent settings need to be changed? Right now he is manageable with a dose of 4mls of Diazepam but if it gets much worse I will be making appointments and be on the rampage....Again! I will not allow Ryan to go back to Square One Again...that is a horrible, horrible pain that No one should go through! He has also been dropping his sats a little more nothing serious but....something that's says "better keep a eye on that" I have stopped his feedings at 11:30 he gained too much weight too fast....he gained 17 pounds in 3 weeks he was at 67 pounds and 4'6" he even had pudge..lol I weighed him a week later he was down to 64 pounds...So I will keep a eye on his weights and add in as needed...I had to change his G-Tube button it was leaking bad had to put in a AMT only one I had and I HATE it....They are just a pain when I can't put the Mic-Key extension in I hate the AMT extensions they are so big, bulky and stiff and I can't put the 10mls syringes in the AMT buttons...So hopefully the GI Drs got it right and ordered Mic-Key buttons...lets pray! Ryan has not had problems with his J site since he was put on IV meds for a blood infection I think he had a infection in his J inside and the med took care of it in fact I think that is where his blood infection came from....Ugh! We parents are NEVER right...Do you ever get that feeling??? I'm just glad that's over! Ryan's lungs are still junky until his breathing treatments are done then he sounds good....back up to 3 times a day and nebs every 4 hours during day hours...His secretions are white,light yellow, thick and then normal not bad enough to call the Dr....Seems I have to be one step ahead of them and is it sad to KNOW what they are going to say?? We will just keep on keeping on ....holding on to what ever we can to make life better! I miss Kyle every day...I hate that I have to miss him! Ryan's fish named Kyle is still living looking good...so Kyilee got two more Beta's Rainbow and Snowflake and we were cleaning them and Kyilee dropped Rainbow on the floor...pops then she hit him on the head with a stone when trying to decorate his tank well....he died she doesn't know yet but I told her when she did that stuff it was a accident....I don't think she will take it too well since just doing it upset her...thank goodness she is not mean to animals and cares about them! Please pray for both Kyilee and Ryan...Thanks God Bless, Jena and Ryan UPDATE: 1-5-10 HI, Please pray for Ryan's Drs to figure out his seizures. He has been having many. He has been awake during the night due to seizures. I am hoping he just needs to get use to his new med and get use to being off his old med. He gets a MRI done on the 14th maybe that will tell more. Since reading up on LGS I think that Ryan has had this Dx for a long time. He was just lost in the system and no one cared enough before me. I never really counted his seizures but have been keeping track of them in a notebook he has had as high as 35 a day not counting nights. He likes to have them when he wakes up. He has been doing good with his lungs. We have dropped down to 3 breathing treatments a day and 2 Albuterol nebs...seems to be helping. Sometimes he can handle his 11:30AM feeding and sometimes his stomach is big and hard and so I skip that days feeding. God Bless, Jena and Ryan UPDATE: 1-26-10 Hi, Ryan has been doing okay....He had a good report from his MRI...abnormal,still having the Bilateral Open Lipped Schizencephaly... but no changes from the last MRI...which is good! He did well during and after the MRI and we were able to leave that same day! I always like them days all too often we have had to stay with no plans to stay.... His seizures are getting some better...they have slowed down at night and he is still having many during the day but they are shorter lasting...I did some research on exactly what type of seizures he is having and I have come up with Absent, Drop Seizures, Tonic Colonic and possible Partial Complex. The Drop seizures are the most annoying and the most powerful..I feel for kids who walk and have a Drop....At least Ryan is seat belted in and even thou he flies forward and hangs off the side of his wheel chair or hits his hands,arms or head on something if not kept safe he does not fall to the ground where ever he may be at...how sad. He is off the Keppra and on the full dose of Banzel now...One thing I have noticed is his leg cramps are coming back more and more...he is crying hard again, his legs, feet and toes are stiff and rock hard. He will bite his hand and fingers...how sad to have to go through this again...I am not sure what is up was the Keppra stopping this? Is the Banzel causing this? Has he out grown his Baclofen and Clonazepam doses? Dose his vent settings need to be changed? Right now he is manageable with a dose of 4mls of Diazepam but if it gets much worse I will be making appointments and be on the rampage....Again! I will not allow Ryan to go back to Square One Again...that is a horrible, horrible pain that No one should go through! He has also been dropping his sats a little more nothing serious but....something that's says "better keep a eye on that" I have stopped his feedings at 11:30 he gained too much weight too fast....he gained 17 pounds in 3 weeks he was at 67 pounds and 4'6" he even had pudge..lol I weighed him a week later he was down to 64 pounds...So I will keep a eye on his weights and add in as needed...I had to change his G-Tube button it was leaking bad had to put in a AMT only one I had and I HATE it....They are just a pain when I can't put the Mic-Key extension in I hate the AMT extensions they are so big, bulky and stiff and I can't put the 10mls syringes in the AMT buttons...So hopefully the GI Drs got it right and ordered Mic-Key buttons...lets pray! Ryan has not had problems with his J site since he was put on IV meds for a blood infection I think he had a infection in his J inside and the med took care of it in fact I think that is where his blood infection came from....Ugh! We parents are NEVER right...Do you ever get that feeling??? I'm just glad that's over! Ryan's lungs are still junky until his breathing treatments are done then he sounds good....back up to 3 times a day and nebs every 4 hours during day hours...His secretions are white,light yellow, thick and then normal not bad enough to call the Dr....Seems I have to be one step ahead of them and is it sad to KNOW what they are going to say?? We will just keep on keeping on ....holding on to what ever we can to make life better! I miss Kyle every day...I hate that I have to miss him! Ryan's fish named Kyle is still living looking good...so Kyilee got two more Beta's Rainbow and Snowflake and we were cleaning them and Kyilee dropped Rainbow on the floor...pops then she hit him on the head with a stone when trying to decorate his tank well....he died she doesn't know yet but I told her when she did that stuff it was a accident....I don't think she will take it too well since just doing it upset her...thank goodness she is not mean to animals and cares about them! Please pray for both Kyilee and Ryan...Thanks God Bless, Jena and Ryan ADDED:4-2-06 Ryan is 6 years old. Condition: Schizencephaly-cleft in skull Bifrontal , SQCP, Developmental Delays, GERD, 100% G-Tube, Congenital Nystagmus with poor vision,Optic Nerve Pallor of both eyes,Hyperopia, Seizures and Reactive Airway Disease. Nebulizer treatments, Oral Suction if needed, Stander, Wheel Chair full time,AFO's, Wrist Splints If you would like to add a page for your child, click on "Add A Child" below. 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