Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Matthew Current Page Page One UPDATE: 1-15-09 Hello all. Not much news to report here on our end, but I wanted to ask for prayers for a dear friend. Our wonderful CaringBridge friends in Minnesota lost their precious little boy, Corey, on Tuesday, the 6th. He would have been 8 in April. Check out his website, if you want to learn more about him, at www.childrenofpromise.net/corey.html . His mother, Margo, has always had such encouragement for me, regardless of her own situation, and I love her and her family dearly. We never got to meet Corey in person, but he will always be an inspiration. Please pray for them as they go through this difficult time. On a positive note, we are all doing well. The majority of the holidays are now over, and it's back to the daily grind. Matthew had a great week this week!! He started water therapy on Thursday, and I have to admit I was a nervous wreck! When we tried him in the pool this summer, he shut down and went to sleep because it was so overwhelming, so I was concerned. However, he showed me! He did wonderful, and didn't want to get out after 30 minutes!! Even the therapist was shocked! Also, he is going to be getting new goals for SPEECH next week!! Hard to believe that Speech is coming along so well now!! I'll keep you posted on us here, if anything changes, but for now, keep the McKenneys in your prayers as they try to heal from this tragedy. Love to all, Denise UPDATE: 1-2-09 Hello all. My, how time flies. I had no idea it had been two months since my last update. Things have just been so busy around here, I had totally forgotten about updating. I downloaded new photos, but the journal kind of got forgotten. As usual, though, no news is good news! :-) Dr. Weinstein was very pleased with how Matthew is doing, and has agreed that water therapy is fine to start in January. So, starting Jan. 8th, he will go for OT, PT, and the Pool all on the same day! Please pray for a quick adjustment, as he may get worn out the first few weeks. Matthew and I went to see Madagascar 2 on Nov. 7th and he had a ball. We got pictures done on Nov. 14th, and surprisingly, they were back within a week! On Nov. 19th, we went to Dollywood with my mom and dad, and Matthew was amazed by the lights once it got dark. We actually met Ed in Murfreesboro for Thanksgiving with his family, and thoroughly enjoyed the weekend with him. December has been a beast of it's own, partly by choice. The week of Dec. 15th was especially busy, with Christmas parties (Aramark, and Matthew's therapy clinic), University of Tennessee pep band practice (2 days), usual therapy, and then University of Tennessee basketball games over the weekend. We left on the 23rd to head back to Murfreesboro for Christmas, and came home on the 28th. Matthew had a nasty cough at the time, and had a rough day yesterday, but seems much better today! I played for the home basketball game last night, and have one more to play on the 18th of January. (The band has been invited back to Washington for the Inaugural parade, and they are leaving that morning, but there is a home women's basketball game that afternoon at 3pm. That game will be especially fun since it will be all alumni!) I think we will be leaving tomorrow for Chattanooga to spend New Year's with Matt and Leslie, unless plans change. Then we are hoping, Friday or Saturday, to go bowling with some friends from UT that Ed used to work with (Actually, it's his former supervisor and her family. She has 3 boys and the youngest is 8, so Matthew will have someone close to his age :-)...yea!) Then, it's relax for the weekend and Ed heads back on the road next Monday. Please continue to pray for his safe travels each week. Next week, it is back to Mobile, AL. After that, who knows. I think having these past 2 weeks with him has helped me a lot. I am ready to hit the ground running next week for another semester of the daily grind. Please continue to pray for us all, and I'll update again soon...I hope :-). Happy New Year!! Love to all, Denise UPDATE: 9-27-08 Hello all. I am writing to ask for your prayers. There is nothing life-threatening going on, so before you panic, let me explain. We got a devastating blow this past week when we went for Matthew's first official PT appointment. In looking at his evaluation, the therapist informed me that Matthew is 38 MONTHS behind on gross motor skills! Basically, Matthew has the gross motor skills of a 2-year-old! Ed and I are still mildly in shock about the whole thing. Please pray for us to get the right guidance from the therapists, and for us to work with him at home as much as humanly possible, without losing our sanity. We have a lot to work on. The evaluating therapist has set 8-9 goals for him instead fo the usual 4-5, so I am going to be busy! Also, Ed is gone now until the 2nd of October on an extended work week...please pray for his safe travel and for Matthew and I to keep our sanity until he returns :). I hope you are all well. I'll keep you posted on the PT situation. God Bless, Denise UPDATE: 7-21-08 Hey all. Sorry it has been so long since the last update. We have had a lot going on (nothing bad) and I just haven't had time to update. However, nothing big has happened with Matthew, so as always, assume no news is good news unless you hear otherwise. We just got back from vacation last weekend. We spent a week in Murfreesboro and then stayed overnight Saturday in Chattanooga with the Harms family, and we all went to the TN Aquarium on Sunday. Matthew and Xander had a blast together!! Please pray for us. Ed is getting job openings left and right for other accounts with his current employer. We have spent the last month waiting on a job opportunity in Tuscaloosa, AL, and they have still not made a decision yet. Then, just a couple of days ago, he got a call from a DM in Georgia about an opening in Columbus, GA. It sure seems that God is leading us in the direction of moving out of state. For Ed, the opportunities are great, but for Matthew, that means we lose our secondary insurance, which has paid for therapy not covered by our primary. We would have to start over with all new doctors, therapists, etc. Not to mention, we would have no choice but to go with the school system for most of his therapy due to the financial/insurance issue. My biggest concern there is his Therapeutic listening program, which he has done so well with. There are not many people trained in it, so it may either have to be scratched, or maintained long distance (Heather has always said she could help me along with CD's and such), which would be next to impossible. Then there is the issue of insurance, and whether we could at least have the same coverage we have now. Many of these accounts are in very small towns with little around them, and the insurance coverage may be limited. The whole idea makes me very nervous, but it's hard to tell if it's just my insecurity or God telling me something :-). So, please just pray that we make a good decision, and go where God wants us to go for now. Also, please pray that if we move, the transition is a smooth one for all of us, and that the medical stuff can be taken care of quickly and he can get therapy as soon as possible! That's about it for now. I'll keep you posted on the job situation. Love, Denise UPDATE: 6-6-08 Hi all. After a very busy month of doctors and birthday celebrating things are calming down a bit. Since the last update, we saw the Pulmonologist, and all is well. We are going to start spacing visits to every 6 months unless something comes up! We also saw the dreaded eye doctor this past Monday, but got great news...his eyes have gotten better!! They are not 100% perfect, but if the doctor was right in his assumptions, there is such a small amount of far sightedness that there is very little effect on his sight. He has these lenses that simulate different levels of vision, and he holds them up to Matthew's eyes. If it is different from his actual eyesight, he should want to push the lens away, but if it is like the sight he actually has, he won't react to it. The doctor showed me what Matthew's vision appears to be, and when the lens was up to my eyes, it didn't even bother me...which means either my eyes aren't that great either, or his are pretty good :-). So, we go back in 4 years. We also had his party as scheduled on the 26th, though we thought we'd have to cancel. On Wed. the 23rd, he broke out in a rash on his legs, and by Friday I had to get him in to the pediatrician. I thought it may have been chicken pox, but when we got to the doctor, turns out it was just a little virus (not even sure which particular one, because even his blood counts were normal with no signs of infection, which led the doctor to believe it was something he was on the tail end of). By Sat. morning he was doing better, and by Tuesday the rash was gone. Well, hope all is well, and I'll update again soon. Love to all, Denise UPDATE: 1-25-08 Hello everyone. Sorry I haven't updated for a while. New Year's was great, and went off without a hitch. We stayed with Matt, Leslie, and Xander for the night, and watched movies, played Nintendo Wii, and had a great time being with friends! Matthew and I have been pretty busy since we got back. I am attempting to get us back to doing therapy at home every day, at least Mon.-Fri., and it has kept me running ragged :-). He is talking a lot now, and blew his first bubble last night! So, things are slowly progressing. I have also been attempting to exercise every day, which is also difficult to work in. Needless to say, updating has been the furthest from my mind. However, around here, no news is good news. We had some issues getting our insurance switched to the new carrier that Brent's employer has changed to, but that looks to be fixed after two weeks of phone calls. Other than me getting a fever the last 2 days (suspecting the onset of a headcold type virus) all is going well. Matthew went to the Pulmonologist on Monday, and we have officially stopped his inhaler that he was on every day! We are to still keep the Albuterol for a while longer, but we don't need to keep it in the diaper bag anymore. We just need to take it if we travel. Brent is trying to get up earlier and come home earlier and so far hasn't had much luck, but we'll see. He does seem to be in better spirits most days, so I am seeing some improvement from his transfer to the UC. Please continue to pray for us to have strength and patience with each other on the bad days, and know we love you all. I'll update if anything comes up. In the meantime, God Bless you all. Denise UPDATE: 11-2-07 Hello all. I was so excited I had to update. I checked Matthew's stomach on Monday, (after he got a much needed bath in the tub for the first time since surgery) and there was very little drainage! I checked again Tuesday, and there was even less, and it was starting to close. By last night, there was just a tiny amount of drainage, so we have gone from gauze and a large bandaid to just a small bandaid with no gauze. I am hoping by the end of the weekend, it will be done draining. His stomach looks so much better now. Thank you for all the prayers for his tummy to heal. I know that is what helped! We are all doing pretty well here. I have called the insurance company again, and hope to know something within the week. Please continue praying about this. Otherwise, all is well. Hope everyone has a great Halloween, and I'll update again soon! Love, Denise UPDATE: 10-25-07 Hello all. Hope you like the new pics. We took Matthew to a local corn maze this past weekend, and he had a blast. Hard to believe how much has happened this year. I need to ask for prayers for Matthew's tummy. It still, even after doing some things the doctor asked us to do when we went in Tuesday, is draining pretty badly and does not seem to be closing. Please pray that it will heal soon, and that we can get the dressing off for good. I hate to have to put him back in for more surgery or have to go back to the doctor again, but my gut is saying more surgery is a good possibility. Also, we are having a lot of trouble with insurance paying Matthew's therapy. We only get 60 visits a year, and they overpaid by like 70 claims last year, and if I can't get it straightened out, we will owe therapy another $750 in copays because our secondary insurance won't pay them. I have already called the insurance company 4 times, and they still have not fixed the problem. I am about at my wits' end with these people. Please pray for my sanity to stay intact! We are all good otherwise, and getting ready for a long few weeks, as UT has a string of home games coming up. I'll keep you posted on Matthew's tummy, if anything new develops. Love, Denise UPDATE: 10-11-07 Hello everyone. Big news...I would have updated sooner, but things happened pretty fast. We called the surgeon on Thursday of last week to see if we could schedule surgery for his g-tube site. They were able to get him in YESTERDAY! I was so shocked, that updating was the furthest thing from my mind, so I apologize for that. Yes, he had his surgery yesterday (Monday the 8th) and did great. Now if I could just get him to settle down a bit until it heals, so he doesn't keep causing it to start bleeding again, I'd be ok :-) (curse those steri strips!). I've been keeping the tylenol in him just to make sure he isn't hurting, but otherwise, he is doing great. After Thursday, we can take the dressing off, but until then, it's only sponge baths. Otherwise, no special stuff. So, after the follow up on the 25th, we should be done with the general surgeon! Hard to believe that 4 years can feel like a moment and an eternity at the same time! Thank you for all the prayers, support, and encouragement over the years. I can't express how much it means to us! Hope everyone is well, and I'll updated again soon. Love, Denise UPDATE: 9-27-07 Hello everyone. Sorry it took me so long to get this update done. We had two doctors on Thursday, and groceries and therapy on Friday, and I needed the weekend to recover :-). We saw the surgeon on Thursday morning, and they removed his g-tube right there in the office! We will be giving it two weeks to close on its own. If it doesn't, we'll go in for outpatient surgery. They'll cut away the scar tissue and sew him up. However, the drainage so far has been very minimal, so we may dodge a bullet. Hard to believe, but Matthew is now tube free for the first time since Birth!! We saw Dr. Weinstein on Thursday afternoon, and she was very pleased. She could tell we have been working at home, and wants us to continue. She would have liked to have increased his speech to 3x per week, but I asked her to wait until next visit to decide. We just finished Feeding Group at the end of August, and I really think having actual speech 2x per week will make a huge difference. So, we go back in four months for another follow up there. We get a couple weeks off now, then we have Dr. Riff on Oct. 10, and Dr. Belmont on the 15th. Otherwise, things are going pretty smoothly. I also found out over the weekend that Brent has been transferred across campus. As of today, he is now the building director at the University Center. Coincidentally, that was the first place he worked as a manager 6 years ago. We are very excited about the possibilities with this. At Presidential, where he has been for 4 years now (I think), they are open 7 days a week, and the food court is always open until at least 9:30 pm. So it was really hard for him to take any time off, because there was always something going on there. However, at the U.C., they are closed on the weekends except for Football Saturdays (which he already works anyway, due to skyboxes), and don't serve dinner on Fridays. So, we are hoping once he gets readjusted that hours will cut back some. At the very least, he can go in on Mondays without having to worry about what happened over the weekend! So, we will hopefully get some more family time soon! Hope everyone has a great week, and I'll let you know if anything happens. Love, Denise UPDATE: 9-20-07 Hello everyone, Hope this update finds everyone well. We finally heard from the pediatrician yesterday, after several phone calls. Come to find out, most of their phones have been out for the last week, and the one line they had was reserved for nurse calls and emergencies only. We will be going to the surgeon on Thursday the 20th at about 10:15 am. Then it's off to lunch, and back to Dr. Weinstein at 1:00. Hopefully, she will be pleased with his progress. I know I am. Matthew's neck has healed beautifully from his surgery, and we are ready to get that g-tube out!! We are all fine around here. Ed is staying pretty busy with work, and football just complicates that as usual. Please continue to pray for his strength and for him to get rest. That's probably the hardest thing for him. I'll try to update after our doctors on Thursday. Until then, happy Fall! Denise UPDATE: 9-7-07 Hello everyone! We are finally done with a very busy week, and have lots of news to report. We went in Wednesday for Matthew's surgery on his trache site. He did phenomenal! They did put a tiny drain in his wound for overnight, but he did fine. He had me a little worried at first, because he needed some blowby oxygen for several hours after surgery, but by shift change at 7pm, we had him off of it. He was pretty rough Wednesday, and refused to eat or drink, so for the first time ever, we had to keep him hooked up to the IV. I was not going to use his feeding tube unless absolutely necessary! After about 6 hours of sleep, he woke up at 5:30 am ready to go! The nurse practitioner came in about 7:30, removed the drain and discussed home procedure for the next few days, and gave us the ok to go home once he started eating and drinking. We got him a breakfast tray at about 9am, and he ate all his scrambled eggs and 1 pancake (oddly, that's all they sent up)! We were discharged by 10am and after a longer than usual wait at the busy pharmacy to fill antibiotics, we were home by 11 am. He hasn't stopped much since! Hard to believe he had surgery two days ago! In fact, the doctor said to expect the site to drain for the next couple days, but since we removed the drain, there has been almost NO drainage...not sure if that's good or bad, but he's not showing any of the bad things they said to look for, so I'm not too worried. Also, we went to the pediatrician today. He weighed about 38 lbs. and we have gotten her blessing to get the g-tube out!! They will be sending a referral to the general surgeon, and we should hear from someone from one of the two offices by next Wednesday. So, it looks like our goal for "tube free by Christmas" may just be a reality after all!! Thank you for all the prayers for us all. Without them, some days would be impossible! Continue to pray for Brent, as Football is about to start here, and that means more stress and longer hours! I'll keep you updated as more things arise. Love to all, Denise UPDATE: 4-19-07 Hello all. Sorry for waiting so long to update, but I wanted to wait until we got the results from the sleep study and had all our eggs in a row before I updated. We went to therapy on the 28th and his weight was still stable, so we continued with NO tube feedings, and as of yesterday, the 16th, he has started gaining a bit again, even after 3 WEEKS with no tube feedings. We went for his sleep study on April 2nd. He woke up only twice, and appeared to do well. By the way, on a sidenote, anyone with a boy getting a sleep study done, 3/8" is the magic number. I cut Matthew's hair to 3/8" the week prior, and got all the junk out of his hair in ONE washing!! Anyway, we had a good Easter, with Matthew getting some outdoor toys (sandbox toys, a beach ball, and a baby pool for this summer) from us and Hot Wheels cars from my mom, which he loves. We didn't do much, but it was nice to just relax at home. We went to the pulmonologist today. We had to wait forever due to backups, and when the doctor finally came in, I was a nervous wreck :-)!! He said the sleep study looked GREAT!!!!!! They will be calling Dr. Belmont (ENT) today or tomorrow, whenever they can get through, and get a date set for his TRACHE REMOVAL!!!!!!! IT IS FINALLY HAPPENING!! Please just continue to pray that all goes well and he continues to progress in therapy and stay healthy! As soon as I get a date for the removal, I'll let you know. Love to all, and PRAISE GOD!!! Love, Denise UPDATE: 3-29-07 Hello everyone. Just a quick update. We saw the ear doctor, and good news, NO FLUID in his ears. Apparently, the right ear drum is a little thickened, which can be mistaken as fluid if not looked at close enough. So for now, we will get the sleep study done next Monday, and talk to Dr. Belmont about the results when we get them. If he does not do well this time, we are going to explore the tonsils and adenoids. Dr. Belmont suspects they may be a problem since his tonsils are HUGE. (I had the same problem as a kid, so I'm not surprised.) He wants to try to avoid removing them if at all possible, because removing them now may affect his speech, which has been affected enough! So we will have to see. Please pray that he can do well next week and we will get that tube out!! I'll let you know as soon as I do. Now for the great news...WE HAVE STOPPED ALL TUBE FEEDINGS!!! We will see how he is doing weight wise tomorrow, and go from there. He has been drinking like a fish today so all is well. I'll keep you all posted. Love, Denise UPDATE: 3-1-07 Hello all. I just wanted to thank everyone for all the prayers last week. Ed went back to work on Friday, and finally started feeling better Sunday. Looks like his sinuses just kicked into overdrive for a couple of days. Matthew is back to eating like a horse and is doing great. He only lost about a half-pound last week with the flu which is wonderful. And, praise God! All I got out of last week was a little case of the sniffles for 3 days!! I know your prayers did the trick and kept me healthy!!! So, things are back to normal here. Just please continue praying for our good health, as there are still 2 months left in the winter illness season. I'll update again soon. Love, Denise UPDATE: 2-22-07 Hello all. Sorry it has been so long since I have updated, but things have been a little crazy here. Matthew had to go back on his oxygen at night on the 1st of February, after dropping to between 80 and 84% on his oxygen levels. By Monday he was no better, so I called the doctor and got him in. It appeared to be a sinus infection and just thick secretions causing Mucus plugs. After 2 days of antibiotics, he was feeling much better, and we even weaned another tube feeding!!! Then on Tuesday of this week, he started with a horrible fever again and lots of coughing and NO eating or drinking orally. By Wed. morning, the fever had still not broken and he wanted to stay in bed. Called Dr. Rogers and got him in as a work in. After chest x rays, a dose each of tylenol, steroids, and a breathing treatment, we went over and got another test done. They called this morning, and would you believe Matthew has the FLU! I was so relieved it was not anything too serious. This morning, after being on 1 liter of oxygen all night and a good night's rest, he was awake at 7:30 with no fever and back to his old self. He is not 100% yet, but he is back to eating and drinking better and tearing the house apart as usual. The doctor has also put him on the new flu medicine, Tamiflu, for the next 5 days, and that should also help him feel better. So, I won't be getting much sleep for the next couple of days with breathing treatments every 4 hours, and all, but at least we are home, and it didn't require a hospital stay. To make matters worse Brent is home today with some kind of illness himself. If he calls in to work, you know he feels bad!!! At this point, I just pray I can stay healthy!! Hope everyone is well. Please pray for us all to get healthy again and for me not to get sick. I'll update again soon. Love, Denise UPDATE: 9-28-06 Hey everybody, Just thought I'd drop a few lines. All is still well here. We go see the Physiatrist next Tuesday. I hope she will be impressed with his progress, especially in fine motor, since we haven't seen her since June. We'll see. Brent is still working a lot, but is doing well otherwise. Matthew has been down below 1/2 liter of oxygen for the last two nights, but I don't know if he'll stay there or if he is just teasing me :-). I am going to try him off the oxygen at night again starting next week, so we'll see how it goes. My biggest concern right now is that if he gets any kind of a respiratory bug, he may need oxygen at that point, and I am just hoping we can manage without the trache if that point comes. Otherwise we may need to be in the hospital for little things...not sure, but we'll cross that bridge when we come to it. Hope everyone is well, and I'll write again soon. Love, Denise UPDATE: 9-14-06 Hello everyone, Sorry it has been so long between updates. I have been pretty busy around here with just the daily stuff, housework, cooking, therapy for Matthew, etc. and haven't had much of a chance. We are doing pretty well. Brent is working a lot of hours, 12-15 per day Mon. - Fri., and another 8 or so on Sundays, so he and Matthew are missing each other pretty badly. Otherwise, all is good. Matthew is now capped off from the time he gets up to the time he goes to bed for the night, regardless of how long, and we will be trying him off at night at the end of the month. We tried during Labor day weekend, but he was still dropping during his deepest sleep (only for 10-20 seconds, but enough that the doctor said he isn't quite ready to stay off yet). Please pray for this to go well. We will be doing it at home first, and once he can stay up consistently here at home with no oxygen, then we will get a sleep study done, and hopefully get the ok to get the trache out. Home Health also said that we can cut back to changing his trache only once a week instead of 3x, which will kind of be nice. I will only have to change out the gauze and ties after his bath, since they get soaked. Well, guess I'll go for now. I have posted a few pics from Chattanooga. Enjoy! Love, Denise UPDATE: 8-9-06 Hello everyone. Just wanted to post a quick update. Everyone here is doing fine. Matthew and I are getting over slight head colds, but he is still doing great with weaning. We start taking him off for 10 hours at a time today, and so far he is doing great!! I can't wait to go tell the doctor in a few weeks! I also found out that Matthew will be put on Tenncare, so that is great news. We are only eligible for one check from SSI, but one check was all we needed to get him Tenncare, and for now, he will stay on it indefinitely. Apparently there is some lawsuit that started in 1987 and until that is resolved, they can not drop him from Tenncare...so just hope it continues! Otherwise, things are now gearing up for a new school year and football season...so please say some extra prayers for Brent and I as we start the difficult part of the year where he works super long hours and sometimes 7 days a week. August-December is always the hardest. Once football is over, then things calm down a little. Hopefully, with his new position as building director, things will be a little calmer after the new year, but we'll see. Thank you for all the prayers for Matthew and for us. They mean so much!! I have some new pics, but don't have time to post them right now. I'll try to do so in the next week or so. Love to all, Denise UPDATE: 8-3-06 Hello all, Just wanted to fill everyone in on our doctor's appt. today with the pulmonologist and let you all know about our trip this weekend. We made plans to go see Matt and Leslie in Chattanooga for the weekend and come back Sunday so that Matthew would not miss therapy again. However, God apparently had other plans. We got a phone call Friday morning to let us know that Brent's Great-Grandmother (Mama Cooper as she was known) had passed away Thursday night and that the funeral was to be Monday at 11 am. So, we made a side trip. We stayed in Chattanooga until Sunday evening, then went to Murfreesboro and stayed with Brent's parents until Monday evening, when we returned home. We had a great time with Matt and Leslie, and Matthew enjoyed having a friend to play with. Xander is doing great, and growing up quick. We went out to eat on Friday and Matthew ate some tortilla chips! We took the kids to the Incline Railway and Coolidge Park on Saturday, and let them play in the fountains at the splash pad there. Then we cooked out and played video games and board games after the kids were asleep. Sunday, we watched a movie, and the guys played video games, and then we went to the 'boro. We are talking about them maybe trying to come here during fall break, but we'll see how the schedules pan out. Matthew's appointment went great. We will continue weening, going 1 hour longer each week until we have him off all day. We go back on August 31st to discuss our options for a sleep study, and that will be the next step. If he passes that, I believe the next step may be to take the trache out, but we'll see. Hope everyone has a great week, and I'll keep you posted. Love, Denise UPDATE: 7-13-06 Hello everyone. I just wanted to drop a few lines and let you know a little about our trip. We left Sunday and got up there in the early evening. My sister-in-law bought Matthew an inflatable swimming pool, so Tuesday, when everyone was off work, we let him play in that for about 30 minutes. He had a blast! Tuesday evening, we went to Ed's Aunt Renee's for a cookout and fireworks. Matthew had a great time running around the yard with the older kids, and then fell asleep by the time the fireworks started. The rest of the week was spent relaxing at the house and playing with the dogs. We got home around 8 pm last night, and were very glad to sleep in our own beds again. Matthew did very well, going up to 6 hours off a day on his oxygen, and still not needing any more at night. Keep praying for him to continue this well. Also, we have a little good news. The car just had a bad battery! It was unfortunately $144 for the mechanic to tell us that and fix it, but Ed's raise finally took effect, so that will help! Well, I think that is all for now, so I guess I'll be going . We don't have any scheduled doctor appt's this month, but I will try to update if anything comes up. Hope everyone had a great 4th of July, and I'll write again soon. Love to all, Denise UPDATE: 7-06-06 Hi everyone. Just wanted to let you all know that Matthew did great for his hearing test today. His hearing is mostly normal with a very slight decrease in hearing the lower levels. (Not sure if that is indicating volume or pitch, but either way, he's doing great!) We go back to see the ENT in November. Please say an extra prayer for us. Ed called me earlier and said his car died on the way to work this morning. He had stopped at one of his produce vendors to pay an invoice for work, and when he came back out to head back to work, the car would not start. I am actually waiting for him to call me right now (he had a meeting at 2) for me to go get him so we can get the car and have it towed, fixed, etc. I am just hoping it won't cost a ton of money to fix. We have our car insurance due next month, and any of you with 2 cars knows that can be expensive! Just please pray it is an easy, inexpensive fix. Also, we are going to see Ed's family in Middle TN this coming week for the holiday. Please pray we have a safe trip, and I'll try to write when we get back sometime. Hope everyone is well, and have a great 4th of July! Denise UPDATE: 6-29-06 Hello everyone. I am so sorry it has been so long since I have updated. We have been very busy since the last update. We have seen the pulmonologist, plastic surgeon, and physiatrist all within the last 2 weeks, and all appointments went well. We have some great news to pass along, also. When we went to the Pulmonologist on the 13th, we discussed the issue of the trache once again, and the weaning idea. WE ARE NOW WEANING MATTHEW OFF HIS OXYGEN! He is off his oxygen, and capped off, for 4 hours a day this week, (we started at 3 hours last week) and we will increase one hour per week until we get to 8 hours (as he tolerates it, of course). If he seems to have a little trouble adjusting as we get higher, we can go longer than one week before we increase. So far he has done great, only needing about 3/4 of a liter at night on his trache collar, which is the lowest setting he has ever had on his collar! I am hoping this is a good sign that we may be ready to remove the trache, but we will see. Please keep us in your prayers that this works this time! My mom, dad, and brother, and I took Matthew to Dollywood yesterday for the first time, and he had a blast!! We saw the Veggietales, Clifford Live (which scared the poor kid to death), and The Little Engine that Could. He also got to ride the ducks and pigs ALL BY HIMSELF (without me), and we rode the flying elephants and carousel together. Then we all rode the big train! He had a great time just watching all the people go by. We were both so tired when we got home, though. We left here at 8am, and got home at about 7:30 pm. So, it was a very long day. We go for the hearing test next Thursday. Please pray that he will cooperate. I'll let you know how it goes when I get a chance. Hope everyone is well, and I'll try to write again soon. Love, Denise UPDATE: 5-25-06 Hello all, Sorry for getting an update out so late. The last two weeks have been a bit hectic. Ed had a party for some of his fellow managers here at the house on the 12th, the same day Matthew had a doctors' appt. and was due for a bath. Needless to say, that day was super busy! He also started with a nasty bout of diarrhea that morning. I mentioned it to the pediatrician when we went for his 3-year check up, but since there was no fever, she felt no need to worry. Well, I had to call the doctor's nurse back on Wednesday, because it was still going on. She said that it sounded textbook like Rotovirus. By that point, we were on day 5 of the diarrhea, so she said to continue his regular feedings like we had been and just make sure he didn't get dehydrated. He had his last nasty diaper on Thursday morning, and has been his rotten little self since. We had his follow up from his ear surgery today, and his ears look much better! He has to go back at the end of June for a hearing test. The last test did not go well because he would not sit still and do what the doctor wanted, so we have to go again. Please pray he will cooperate this time, otherwise it will be a wasted copay. We are going back for an actual ENT in November. Otherwise, things are slow for a few days. With the holiday Monday, therapy is cancelled, so we get a 6 day break after tomorrow! Hope everyone is doing well, and I'll update again soon. Love, Denise UPDATE: 5-11-06 Hello all. Just wanted to send a few quick lines to let everyone know the surgery to replace the tube in his left ear and do the bronchoscopy went great Wednesday. We were home by 12:30pm, and had most of the day to rest and recoup from being up before the crack of dawn. He will be getting ear drops until Monday, and otherwise things are back to normal. We saw the eye doctor for a check up today, and we will be going back in 2 years. There are signs of an extremely mild astigmatism and near sightedness, but all things indicate at this point that they are not affecting his sight right now. Next Friday is the pediatrician,and the followup with the ENT the end of the month. Otherwise, things should start to settle down now. Hope everyone is well, and I'll try to update as I get time. Love to all, Denise UPDATE: 5-4-06 Hello everyone, Hope everybody is well. Sorry I didn't update sooner. Just a crazy busy week. We had an appointment with the ENT on Tuesday, and now have to go next Wed. May 3rd for a new tube in the left ear and a bronchoscopy. The left ear is full of fluid again, and his eardrum is starting to retract into the ear due to the pressure. However, the doctor says that should correct after the pressure is released. He wants to do the bronch simply because it has been almost a year since the last one was done. Just to make sure things are still ok. Otherwise, things are going well. Matthew has found a new love, VIEWMASTER! I bought him one with some of his birthday money, and he can't get enough of it. Now if he would just quit bending the reels, we'd be ok ;-p. We are all doing ok and looking forward to Ed's summer slow down! Thank you for all the birthday messages for Matthew. It's so nice to know he is thought of! Everyone have a great weekend, and I'll update sometime next weekend. Love, Denise UPDATE: 4-27-06 Hello everyone. We have survived another birthday party for Matthew. Actually, the day ended up being perfect, other than a little muddy from some severe thunderstorms Friday night. We were outside most of the day, including Matthew. He was very upset every time I had to bring him back in to go back on his oxygen. He got some great stuff, and all things I was wanting him to have, which was great! It was so nice to have family here to finally see our house. I have downloaded a couple of pics from Saturday. Hope you enjoy them. We are going to go shopping in a little bit to get him something with his birthday money, so I'd better go finish housework. Love to all, Denise UPDATE: 4-13-06 Hello everyone, thanks for checking in on us. We are all doing well. We somehow managed to dodge the tornadoes and hail storms from last night here in our area. North of us got hit pretty hard, but we mostly had a lot of thunder, lightning, and rain. No hail, and no tornadoes, thank goodness. We are starting to get things ready for Matthew's birthday in a couple of weeks. All we need now is the food to cook for our cookout, and to decide what drinks to serve. Otherwise, we are almost ready. I have plates, cups, napkins, cake mix, frosting, and decorations. I just hope his party goes well. I will try to take the time to take some pictures during the party and post a few sometime soon after. Hard to believe he will be 3 in about 2 1/2 weeks! By the way, we went to the dentist for the first time on Tuesday and got great news...no cavities!! Also, he only has a small amount of plaque build up, but since he is still not eating much orally, the doctor did not see any point in trying to clean them just yet because he is at a very low risk for cavities until he starts eating more. Also, we went for our follow up with the pulmonologist on Thursday, and all looks great. We will be going back to them in June, as long as he stays healthy! We have had lovely weather today, once the rain and clouds moved out. The week to come shows low to mid-70's all week, so we are looking forward to the warmer weather! I'll write again soon. Love to all, Denise UPDATE: 3-23-06 Hello all, I wanted to update quick before Matthew woke up this morning. We were admitted to the hospital again last Tuesday. He apparently picked up another respiratory virus and had similar symptoms to those he had back in January with the RSV, oxygen needs through the roof, low levels, high heart rate, etc. His oxygen went up over the weekend (the 11th and 12th) and he was doing a lot of coughing. I got him in to the doctor on Monday, and after relaying the events of Thursday night, he thought it may just be mucus plugs from the trache being out all night, and maybe a little inflamation from me putting it back in, he said to keep him humidified as much as possible, and if he wasn't better by Wednesday or so, to call back. At 1:00 A.M. his numbers bottomed out again and he could barely stay at his normal levels on 6 liters of oxygen...so I called the doctor Tuesday morning as soon as they opened, and said we needed to admit him again. I had gotten 2 hours of sleep Monday night, and he had gotten worse. So we proceeded to go and wait 4 hours down in the ER (the doctor wanted us to come there thinking it would be faster to get us admitted, boy was he wrong) and finally got a room at around 2:30 P.M. He was doing much better by Saturday morning, but the doctor wanted to wait one more night just to make sure we were out of the woods. They took a sample of his trache secretions and it did grow something by the weekend, so I have to go today and get his antibiotic filled. Otherwise, he is doing much better, and seems as happy as I am to be home. The doctor thinks that the biggest problem was the fact that he was still a bit sensitive from the RSV, and that this bug he picked up was minor, but the sensitive lungs just couldn't handle it. Apparently it can take up to 6-8 weeks to fully recover from RSV, and he was right on the end of that time. However, we are all doing much better, and are glad to be home. I'll update again soon. Denise UPDATE: 3-16-06 Hello all, Just figured I'd update a bit. We went back to the pulmonologist on Thursday the 9th and all went well. He said his lungs were clear as a bell, which was great news!! The doctor is a bit surprised we are not ready to get rid of the trache yet. He really thought we would be off the Oxygen by now. However, he also emphasized that he was not concerned or worried by any means, just a little surprised. Personally, I am perfectly content to wait until Matthew is ready. We had a bit of a scare this morning. I had noticed that he needed a bit more oxygen last night (only about 1 liter more than usual, so nothing to be super worried about). For some reason, I thought to check his trache tube this morning, and it was out, and to beat it all, the hole was partially closed up! I got the tube back in with very little trouble, but it was definitely a bit more snuggly fitting than usual. However, there was never any blood, and he coughed up some mucus through his tube right after it went in, so I know it's in right, and that I didn't hurt anything. Imagine my surprise when I saw that, though! Otherwise, we are all doing ok, enjoying temps in the 70's here through the weekend, and starting to think about what we want to do on the house and yard this summer...hard to believe Spring is right around the corner. Hope everyone is well, and I'll write again soon. By the way, for the family and friends who are thinking of coming in for Matthew's birthday, could you let me know...I am starting to plan for his party, and would like an idea of how many to expect. Thanks, and love to all, Denise UPDATE: 3-9-06 Hello everybody, Hope everyone is doing well. I first want to thank Aunt Patsy for understanding about the pictures and that promises are meant to be broken sometimes!! Patsy, thank you so much for all your support. It means the world to me!! We finally seem to be back to normal around here, just busy. Seems all our doctors have fallen at the same time or at least within the last 3 weeks. Matthew is finally over whatever little bug he had last week, and we also got his new orthotics Monday. It's amazing what a pair of shoe inserts can do for a kid with bad ankles! His balance was 100% better as soon as we got them on him, and he can now stand and take a couple steps on tiptoe without help! The biggest improvement is in his ankle movement. When he walked before, he kind of dragged his feet with the toes pointed out, but now he walks with his feet much more straight, and he can almost run! His ankles actually bend when he walks, too, since he can walk more heel to toe now. Hard to believe something so simple can make such a difference! Well, time for his bath, so I'll go for now. I'll try to update again soon. Love, Denise UPDATE: 3-2-06 Hello everybody, Hope everyone is doing well. I first want to thank Aunt Patsy for understanding about the pictures and that promises are meant to be broken sometimes!! Patsy, thank you so much for all your support. It means the world to me!! We finally seem to be back to normal around here, just busy. Seems all our doctors have fallen at the same time or at least within the last 3 weeks. Matthew is finally over whatever little bug he had last week, and we also got his new orthotics Monday. It's amazing what a pair of shoe inserts can do for a kid with bad ankles! His balance was 100% better as soon as we got them on him, and he can now stand and take a couple steps on tiptoe without help! The biggest improvement is in his ankle movement. When he walked before, he kind of dragged his feet with the toes pointed out, but now he walks with his feet much more straight, and he can almost run! His ankles actually bend when he walks, too, since he can walk more heel to toe now. Hard to believe something so simple can make such a difference! Well, time for his bath, so I'll go for now. I'll try to update again soon. Love, Denise UPDATE: 2-23-06 Hello everyone, Sorry for the delay in updates. I promised a couple of you new pics over the weekend, but Matthew started Wednesday with another virus (a coldlike one), and I had it by Saturday, so neither of us has been feeling too hot lately. We went to see Dr. Rogers yesterday for his RSV follow-up, and I explained what had happened since last Wednesday. He felt that it wasn't too serious. His oxygen was down to normal sleeping levels last night, so I am not too concerned either. He still needs a little more during the day, but I think that is due to the nasal congestion. He won't let me suction his nose with anything, and I don't have enough body parts to hold him down with ;), so we will just have to deal until he gets better. He hasn't been cranky or upset, but you can tell he doesn't feel 100%. When he gets better, I will try to get some new pics taken and posted. Otherwise, just pray we can all get healthy again and stay that way. This has been a rough month for us all. Love, Denise UPDATE: 2-16-06 Hello everyone, Thanks for checking in on us. I had my appointment for Tenncare on Thursday, and we can NOT get Tenncare until we have $3000 in UNPAID medical bills. So I will be trying again to get him on SSI. We shall see. Matthew is doing much better, and gets his last round of ear drops tomorrow morning. There is really no more drainage, but the doctor said to do the drops for 7 days, so that is what I'll do :-). Otherwise, things are going well here, and we are enjoying a good bit of snow right now. We have had somewhere between 4-6 inches of snow since Friday night, and it has been beautiful. Luckily, there have also not been many problems on the roads as of yet, so we aren't completely snowed in or anything, but it is sure sticking to the ground, cars, porches, etc. It has been super cold for TN as well, with temps hovering right around freezing to 40 degrees during the day and 20's at night. So, as much as I'd love to take him out, Matthew has been pretty much stuck inside watching the snow instead of playing in it. With his trache, the cold air would just irritate his lungs way too much, so it isn't worth the risk. He has enjoyed watching it, though. Hope everyone is doing ok and staying healthy. I'll write again soon. Denise UPDATE: 2-9-06 Hello everyone, Just wanted to update everyone. Matthew went back to therapy yesterday, but they had to cancel feeding group because both of the therapists that run it had sick kids! Looks like Matthew got sick at just the right time. It seems a lot of the kids have been sick while we were gone. Of course Matthew can't make things easy, though. Sunday, his right ear started with some nasty drainage, so I got him into the Ear doctor yesterday and he has an ear infection. Nothing major though. I laughed at the doctor when he confirmed my suspicions, and told him "After the last 2 weeks, this is a breeze!" :-) He is even letting me clean his ear and put the drops in 2x a day, without fighting me!! What was so funny, was he was not crying, tugging at the infected ear, feverish, or showing any other signs of the infection except the drainage. So at least he isn't miserable! Hope everyone is doing well, and I will write again soon. Love, Denise UPDATE: 1-26-06 Hello everyone. Our lucky streak has finally ended. Thursday, Matthew started with another cough and runny nose, and Thursday night did not sleep well. However, he was in good spirits all day, so I didn't worry too much. Friday, however, was a different story. He was coughing, screaming, crying, and clinging to me all day long. I was going to try to make it through the weekend and get him in to the doctor on Monday. However, that was not to be. When I put him to bed at 6 PM, his sats were low, and I ended up putting him on about 3-4 liters of oxygen. (Normal is about 1 1/2 liters) I thought it was just the congestion, but I was starting to get concerned. Ed got home at about 8:45, and by 9:00, Matthew was dropping his sats again, and could not get them up even on 6 liters...so starts our exciting last 48 hours. We got him dressed and went to the ER at Children's and within 30 minutes got the news. Matthew now has RSV, which for those of you who are not familiar with it, it is a nasty respiratory virus that can be fatal in kids under the age of 2, and is especially dangerous for kids who were born as preemies and/or have other respiratory problems. They started steroids and breathing treatments immediately, and antibiotics just in case he had any other bugs they hadn't detected yet. By 1:30 am we were in a room for overnight treatment and observation. He got a little sleep, and seemed to be feeling better. He responded very well to the meds, and by morning, the doctor gave us the option. He said he was inclined to keep us one more night in case he got worse again, but trusted my judgement. I said let's go home. He was back down to a little above normal oxygen, and very ansy anyway. We got him home and he had a fairly uneventful afternoon, happy and playing and wanting us to read. Once he went to bed, it was another issue. I was up with him every 30 minutes or so suctioning and doing breathing treatments every 3 hours (doctor said 4, but he needed it in 3). So, we have a very long week ahead of us, and no therapy or outings of any kind. They have him on steroids, tylenol for fever/pain, and breathing treatments, along with his normal meds. It is all they can do since it is a virus. PLEASE storm the heavens that he can recover from this illness quickly and be my happy boy again. I already miss that smile! Please pray that he can get some rest. He is sleeping now, otherwise I would probably not be able to update. He wants to sleep so bad, but the coughing and discomfort keep waking him up. Please also pray for Ed and I that we can get some rest as well. Without it, we may be just as cranky :-). Love to all, and I'll update tomorrow. Denise UPDATE: 1-13-06 Jan. 9th. Hello all, Just wanted to thank everyone for the prayers for us. Matthew and I are both feeling much better, except for a little bit of a cough on my end, but the stuffiness and congestion are completely gone for both of us. Not much else to report right now, but we are enjoying the short warm up here, in the 60's both yesterday and today, and 50's the rest of the week...seems the seasons are a bit confused right now :-). We'll enjoy it while we can. Hope everyone is doing well, and we'll write again soon. Love, Denise UPDATE: 1-5-06 We hope everyone had a safe, healthy, and happy holiday season. We went and spent a week with my in-laws, and Matthew got lots of great presents. Unfortunately, he started with a cold on the 27th and is still a little junky in the mornings...and I started with it by Thursday, of course, so we have started the new year with a little sickness, but nothing that has really kept us down too much. Hopefully we can get Matthew back on his normal schedule by the end of the week. With Ed off since the 22nd, and being out of town for a week, it has been hard to keep him in his normal routine. We had a nice trip, though, and even went to the Opryland hotel to see the Christmas lights they had there...it was gorgeous!! We currently have no doctors' appointments now until March, so I'll probably not update until then, unless something happens, good or bad. I'll probably be trying next week to get Matthew on Tenncare, so keep me in your prayers for that. Be safe and stay healthy all, and I'll update again soon. Love, Denise ADDED: 11-02-03 Matthew was born 12 weeks early due to loss of amniotic fluid and blood flow issues. He has Bronchio-Pulmonary Dysplasia, has Bi-lateral cleft palate and lip, is 6 1/2 months old and is still in the hospital. It looks like we won't be able to get him home for his first Christmas. He can not seem to come off the ventilator. Had a tracheostomy done on 9/25/03, as well as a G-tube for feeding, will also be having lip repair (at least the first part) on Tues. 11/4/03. His biggest problem keeping him at the hospital right now is his lungs. 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. 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