Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Nate H. Guest Book       Photos Please send Happy Mail to: Nate H. P.O. Box 1753 Columbia, Tn 38402-1753 Current Page Page One Page Two Page Three UPDATE: 1-28-08 Just a quick update... Nate has pnemoina on both lungs. I caught it very quickly and got him to the doc this morning. They gave him 1/2 gram of Rocephin, 2 weeks of high dose Clyndamycin, and 5 days or Ora-Pred.. He is already feelings MUCH better!!! I however am asking for prayers of comfort. I am really dealing with some matters of the heart and I'm not doing very good at all.. Until Next Time, Ashlie UPDATE: 1-11-08 After some asthma, and several allergic reactions Nate is back on track. I have had to cut his calories back to 20 cals an oz, and really adjust his feeding schedule, his reflux is finally under control. He's just fed much slower, and more frequently. But he's feeling better, and still doing wonderful in school. Cincinatti called and wanted him there for scope on the 29th, but with his recent need for Prednisone, the scope has now been put off until Spring. But with him doing so well I don't see the need in the trip. Zach is doing great. He got his report card today, and is still on the Honor Roll with perfect attendance for the year so far. I will close for now, just wanted to update real quick. Ashlie UPDATE: 12-24-07 OK, so 2 Christmas's down and 2 to go...LOL Only notch was my Dad, which I never speak of. Me and the boys are hanging in there, but wearing down. Tomorrow is the best, we go to my Mom's. It's always fun, and promises lots of laughs..lol Not to mention my mom and I have an ongoing prank going!! Nate was the show of the day of course. My grandparents have not seen him since last Christmas. He kept my Grandma laughing the entire time. He's such a showstopper...LOLOL Yesterday: This journal keeps getting longer and longer, but I want to make sure everyone keeps up :) YAY!!! It's safe to say that Nate is outta the woods as far as the hospital!!! He had a better night last night, and NO big attacks today!! I slept in his floor last night to make sure I stayed to the minute on his treatments and I have kept them to the minute today. Tomorrow I'm gonna try to space them out a little. He felt better today and wasn't complaining of his throat closing or chest hurting. Basiclly what happened was: when a person with multiple food allergies ingest an allergen they can go through a delayed reaction process. His started Tuesday night with a little coughing and alot of reflux, as his body continued further into the reaction his asthma worsened and of course since he is asthmatic anyway it made it worse. Once the meds were changed and the steriods given the steriods kill the reaction. The intense breathing treatment regimen allows his air passages to stay open and clear while the Prednisone works it's magic. He's also on an inhaled steriod so that did help speed up the process. It's a WHOLE BIG process that I have to explain to alot of people, but "us" EGID mom's know our stuff and can tell you the molecular breakdown of an eosinophil...LOLOLOL There are 3-4 different types of allergic reactions which alot of people don't know. I do feel really bad that this happened. I did know they were providing marshmallows and I have sent them in his bag before. So I do not consider anyone to blame except me. She did ask after he had eaten one if they were ok, and I said sure. Not even thinking that they were colored and a brand I didn't know. I should have looked at the bag before hand. Lesson learned. Merry Christmas, and Yes, I will have my baby home with me this year. Love, Ashlie UPDATE: 12-22-07 OK, so now I know the marshmallows have made him sick. He's still continuing to have a delayed reaction. I wish the school would not have given them to him before asking. They know he eats marshmallows, but not what brands are safe. I was there and could have stopped it, but I didn't realize till late last night what they had in them. He has an VERY severe asthma attack at 1:30 this morning. It scared he and I both. I took him to the doc today. They increased and added more meds. He was wheezing 2 hrs after a treatment that should have worked for 6-8 hrs. They gave another treatment in the office and did a chest x-ray. He had another attack tonight about 7 after a 4:30 treatment. I almost took him to the ER, but I just pulled every med and trick I could. I do have his docs cell number. I called and he heard him. He said he was gonna do that and only take him to the ER if he became distressed. I have a feeling we will end up there before the night is over. He gets another treatment at 10:30, and one at 4:30am. If he flares again I hope I can control it enough to wait and get him back in to the doc tomorrow. I'm very optimistic about us spending Christmas in the hospital. I hope not. I will update again when I can. As you all know my routine with his treatments has me down to about 3 hrs of sleep a night. Ashlie UPDATE: 9-20-07 Nate is really doing much better. He's on his 3rd day of Elecare and is finally feeling MUCH better. No tummy aches, or complaining of his bottom hurting. He is still super swollen, but is feeling really well. His asthma is under control, and he's doing awesome in school. His best friend has a Trach and his other little friend is wheelchair bound and has a "tubie"!! He did take part in his schools annual fundraiser the "Wildcat Walk" He walked and ran for 30 minutes than he was taken in for a feed and to rest. He was ok with that..lol On September 30th we will be leaving for Great Wolf Lodge in Mason OH, thanks to The Sunshine Foundation.. Me and the boys are VERY excited and can't wait for this much needed break. I have already called the Elements Spa and arranged for a 1 hr massage, facial, and spa pedicure on our last day there. Oh, I sooo can't wait to be pampered.. We hope to return home on Weds. the 3rd, but seeing as it's next to Kings Island pending my own personal finances we may stay another night or 2..lol Zachary is still just Zach. He's been grounded alot lately for, well, being a 9 yr old little boy that thinks his momma is stupid..lol He is learning fast, so hopefully he will get it together. I did get his 3rd grade TCAP scores and he scored advanced in all areas, and at parent-teacher conference his teacher told me he learns on a 5th grade level. So he's got to stop talking so much (wonder where he gets this from..lol), and do his work. I'm gonna run for now. I will have my digital camara and laptop at the Lodge (they have wireless throughout the resort) so I will probably post lots of slideshows at night while the boys rest and I sip an adult beverage..LOL . Love, Hugs, and Elmo Raspberries, Ashlie UPDATE: 9-12-07 OK, back to business... Dr. Putnam has now switched Nate from Neocate One+ over to Elecare. Same elemental type formula just different makers and some different ingredients. After over 4 yrs Nate is just not tolerating the Neocate anymore. I'm NOT at all happy with this. When Nate was diagnosed with EGID I knew that he was on the worst end of the spectrum, but with soooo much research and funds being pulled in to fund more, now a National Eosinophil Awareness Week.... WHY HAVE THEY NOT found an easier way to treat this.. I don't get it, and it's not fair. So we are gonna work our way through an Elecare trial and re-evaluate him in Nov. when we go to Cincy. Nate is doing well in school. He's very tired most of the time, and seems to need alot of stimuli from me to calm him when he gets home.. I get so tired sometimes, and wish I could just make miracles happen. Then I realize that "He" already is a miracle. I can't wait to see all that the future holds for Nate and I, and Zachary too. We are just one little team. Nate's medical problems will NEVER define him.. Just remember the next time you have pizza, cheeseburgers, birthday cake, or a simple holiday dinner that there are children out there whom have never had these things and probably never will. Then look at the happy, smiling little fighters they have become.. It's priceless!!!! UPDATE: 9-3-07 Where are we??? Ok, for starters Nate did not tolerate the increase in calories. He is now back to 24 cals an oz, and on the same strenous feed schedule. I am completly wiped out, but this is the only way to see if his nighttime feeds were causing problems. Cincinatti had me email pics of Nate swollen, as well as pics of him before he started to swell. I have a feeling we are gonna end up there before November, and will be there for a minute. I hope not, BUT I know that if this happens he will not leave there care without answers, and I hate the fear of the unknown. His asthma is really flared up. It started the other night with the calorie increase. He only tolerated about 350 cc's at 30 cal, and he really had ALOT of reflux and a really bad, fetal position tummy ache. Tonight it really got bad. I used his inhaler at 4, 6, and 7:30. Finally I gave him a Duo-Neb (med for people with Chronic Lung Disease, it has 2 bronchodilators) breathing treatment, and he's resting well for now. Lets hope it lasts. We did go to my Mom's today to celebrate Labor Day. Me and the kids had a blast. I kicked off my shoes and had a water ballon fight with 5 little boys. Needless to say I got ambushed...LOLOL And my family got lots of laughs watching them chase me all over an acre yard throwing "grenades" at me...LOLOL So to sum this up: I'm watching his asthma, hopefully NO ER trips, if he's still bad Tues. I will take him to the Doc. If I don't hear from Cincy before Friday I have to weigh him again, and call with that and surgical dates for Nov. Thats where we are. Still asking for tons of prayers for Nate and I. This just seems to be a bad time of year for him, but we will fight our way through. Until Next Time!!! Ashlie UPDATE: 8-29-07 Can I just Vent for a moment?? I'm ready to rip my hair out!!! OK, everyone knows about Nate's swelling and excessive weight gain problem. I called Cincinatti yesterday to reschedule his appt. By the time we hung up it went from a clinic visit to pre-op, Endoscopy, Colonoscopy, blood sugar and sodium levels, and a clinic visit in November. They are also changing his perfect feed schedule.. Ok, so his "current" schedule is 9pm to 7ish am, refilling at midnight, and 4 small bolus feeds a day, at 20 calories per oz. His new one is at 30 cals per oz and is as follows: 8pm to midnight, then off for the night (hoping to reduce reflux, fluid retension, and giving him his feeds while active).. Then reflux meds at 6am, bolus feeds at 6:30a, 9a, 11a, 1p, 3p, and 5p all of these 3oz feeds, then a 2 oz feed at 7pm..LOLOL UNREAL!!!! Of course I can do this and still work and balance a pretty normal household. It's just a HUGE adjustment.. And the school is making me get new Dr's orders for changing the ozs to be given while in there care.. So tomorrow morning will be fruity as if I didn't already have a FULL DAY.. HOLY MOLY!!! So I will start this tomorrow night at 8pm, and just jump in and PRAY it works. I have to weigh him, and call Cincy next Friday with any weight changes and to get our Nov. dates.. I am also going to ask Dr. Putnams nurse to PLEASE send the orders to Nate's Ped. here for the Blood Sugar and Sodium tests. I do not want to be in Cincy for weeks, and they will keep us there until this is solved be it 4 days or 4 weeks, it happens ALL the time.. On a sad, but joyous note tomorrow will be Kari's last day. I am soooo proud of the progress Nate has made. He is such a different child, but I hate to see her go. She has been seeing him since July of last year, and she and I have become friends. I'm sure it will be hard on Nate and I both.. I did get her some really nice little gifts as I HUGE thank you. Had it not been for her, I probably never would have gotton Nate into public school.. In the last year after 50 hrs a month Nate can now go to Walmart, the movies, out in the public and behave better than his 9 yr old brother. I will get pics of them tomorrow, and share those as soon as I get a minute.. Zach is doing so-so. He's entered the gates of puberty hell in all it's glory!! He is really pushing the limits these days.. I took him off the bus in the afternoons after he so honestly told me about some things he was doing. I'd rather take him off, then him be put off. I am going to try again and let him start riding tomorrow. I have conference on Thurs. night, we'll see what happens after that. We shot a commercial for the salon today, and I'm going to the studio on Friday night to do the voice over. It was very exciting and fun!! Probably the highlight of what appears to be a crappy week. That salon is such an outlet for me. It gives me a place to put my energy and creativity, and escape the everyday hell's we all as special needs parents face. It's alot of hours, but both kids are in school, or bed while I'm there, and Saturday's they are with there Dad. Funny how things just happen at the right time in our lives. I do ask for prayer for Nate and I as we make another adjustment. That his tummy be able to tolerate this high caloric intake, and that my body be able to hold out. I am really becoming sleep deprived more and more each day. I'm trying to sneak in little power naps in the evening while the boys are having free time (they get 30 minutes each evening to do whatever they choose).. I have noticed a change in my attitude and I find that I am saying I'm sorry alot more now to people I speak with daily. I will post again as soon as time allows.. Love and Hugs to All!!! Ashlie UPDATE: 8-17-07 Nate had a great 2 days at school. I cried like a baby yesterday morning when I dropped him off, and this morning he teared up. He said he wanted to stay home with me, but Ms. Amy and I assured him that he would not have fun with me at work. He saw Ms. Tracy and went on, I called and checked on him a few hours later and he was fine. He is having a hard time adjusting to the nurse, and really doesn't care for her. He is very tired, and his little legs are very sore and painful. It is going to be hard next week going full time, but he will adjust... AND SO WILL I!! Even though I'm working I miss him like crazy. But he is such an amazing child.. When I picked him up this afternoon a handicap bus was in front of me and Nate told me that " was his friend in a wheelchair and he has a tubie to" it brought tears to my eyes. I'm so proud of him, and I'm so glad that he can see that having tubie doesn't make him weird, just different.. Zach is still doing great, but his teacher is not challenging him enough. Hopefully this will speed up to his pace soon.. I am very tired emotionally, mentally, and physcially. I'm still working alot, but have been taking some extra days off to spend with Nate before Monday. I'm also not going in as early.. UPDATE: 8-14-07 God, give me the strength to leave my baby for his first FULL school day.. I am scared on 100 different levels.... Everything has been handled, and he should be safe. I AM NOT ready to do this. I'm just asking for toms of prayers, for He and I both!!!! I will update tomorrow night with all the details I can.. UPDATE: 7-10-07 Well things are good and bad. Nate's bloodwork and urine came back good today and he's lost 4 ozs. Bad news he actually has 3 new hernias. He sees his surgeon next Monday for a consult... Thats all I feel like even typing right now, just wanted to update. Hugs, ashlie UPDATE: 6-8-07 Just finished our Vandy trip. Nate's leg pain is being caused from a mass on his hip. It is in-operatable. He will be having an MRI, to determine if it is solid or fluid filled. If it's fluid filled it can be drained, if not it's off to Oncology for further investigation. The Ortho seems to think it's just part of the NF. Nate will be getting a medical stroller now, and I was given strict instructions as to when to stop activity, medicate, aquatic exercises, YADA, YADA.. He also needs to see a Urologist, and maybe back to the Neurologist.. I'm really upset, and feeling as overwhelmed as ever. I'm going to have to pretty much shadow my 5 yr old. Life seems so unfair for him. But he's still smiling, and happy. I'm sure there will not be any updates or emails for a while. I need sometime alone, with no obligation to update a group or this page. Just please keep Nate in your prayers as we start another round of testing. On a lighter note his Button change went great!! He's so brave, his button is now a 14 x 1.7... He does have some external scar tissue developing on the outside of his stoma site. Gotta run, I'm going home now to cool off and try to take this all in. Love, Ashlie UPDATE: 6-2-07 I appealed Nate's medicaid and SSI termination several weeks ago. Found out today, I WON (NO WE WON)!!! He is now guaranteed Medicaid as his secondary insurance until the year 2023..lol I did change his Ped. back to where we started at birth. He was with her until he was 3 1/2, and now back with her. So his well child check-up has been changed to June 12th. He is having his button changed and also has an Orthopedic appt. on the 8th at Vanderbilt. And we are due in Cincinatti to see Dr. Putnam on the 19th. I managed to get all of this scheduled on his off preschool days. Which by the way the crummy school system here has yet to call me and tell me what 2 days he will be going. His IEP states he is to start the week of June 4th, well they just may be in federal violation and I WILL stick it to them. No more nice mom, I have had it (I have had it with alot of things, and I'm going to fix them all very soon). Just wanted to update real quick. Actually I am not feeling well, I have allowed myself to get so tired I have a migraine and muscle spasms in my legs.. UGH!! I need some rest. Hopefully tonight, and can get in bed right at midnight and sleep on through. We'll see... Gotta run... It's getting to be the nutty time of day around here. Love, Ashlie UPDATE: 5-25-07 Can we say Cabbage Patch Kid!!! He's such a big boy now :) Nate got his little braces yesterday. They are really hurting him on the right side where his ankle is the worst. I'm going to try buying him a wider shoe tomorrow, but they may need to be cut down somemore. Nate will be going back to school the week of June 4th for the Extended School Year. He is showing alot of regression already, and his tounge is already trying to get lazy. he also stopped using the potty all together. Zachary is feeling better, just really hating that his summer started off with a broken arm. A week from tomorrow he see's his Orthopedic for x-rays and as long as everything is still in place he will go into a hard cast for 4 weeks, than a small brace for 2 weeks after that. Good thing is his cast will be waterproof, so we will be getting our pool ready next week sometime. I'm still hangin in there, but still VERY overwhelmed. I will be glad when we see Zach's doc and I can get a good idea of what his limits are. This is our first broken bone(s), but I'm sure not the last. Boys will be boys, thats for sure. I'm going to run I just wanted to update really quick and post the new pic of Nate taken yesterday at the Dr's office. Love, Ashlie UPDATE: 5-21-07 Zachary was transported by ambulance yesterday at 2:40pm from school. He fell off the balance beam at recess. I freaked and this has not sank in yet. I'm getting ready to drag into Nate's Pre-Graduation. Zach broke his right arm in 2 places (both bones) right at the wrist. It did not effect the growth plate. He was in ALOT of pain, and finally at 8:00pm they took him to the OR, put him out, and re-set it. We got home around 1am. All I can say is "What have I done"!!! I feel like I can't get a break, and no one will help. Just please pray for the 3 of us. Me to stay healthy, and settled, Nate to continue to heal from his ear infection, and most of all Zach. He's Very upset that he's now done for the ball season. He will be in splint cast for 10 days, than a hard cast for 4 weeks. I will update again when I can, not sure when that will be. Love, Ashlie Update: Just a really quick update. Zach is on the mend. He is really having a hard time adjusting to life with one arm. His pain is getting better. I have just been using Motrin and only the Tylenol 3 if he is in alot of pain. He is still having to prop up his arm and ice it down. He goes in on May 31st for his hard cast. He's not eating much, and is very upset that he can't finish out the ball season, but he should be good for Fall Ball. His hard cast will be waterproof, so that will help. He has been crying some. I'm not sure if it's all the drugs or just being down or a combo of both. After being at the school on Friday and chatting with the teachers whom actually saw it, they were just shocked at how bad of a break it was. We were told he was lucky it didn't puncture the skin.. His wonderful principal rode with him in the ambulance (I have posted about her here before, she has ALWAYS gone to bat with me for Nate). They knew it was broken, but when I told them it was a complete break (meaning the ulna and radius were completely broken and dislocated) of both bones they didn't seem shocked. I saw it stablized on a board, and it looked green and very deformed. They said when he held his arm up before it was stablized you could see the bones sagging... I feel so bad, and I freaked out!! I'm used to Nate having issues, but not Zach. I have stayed awake for days icing his arm, checking for pain, and just helping him all I can. Nate is doing well, I pick up his braces on Weds. His Graduation was wonderful!!! I'm going to make a You Tube and post some pics tomorrow. He stole the show!!!! Alot of the parents cried to watch Nate. He has had a long 2 yrs in Pre-K there. With all the sickness, and to have seen him on Friday, you would have never known. He sang, danced, and made us ALL laugh!!! Words cannot even describe how I felt. After yrs of fighting, and the unknown to see him graduate preschool was a milestone I didn't know if I would ever see!! He will now be going in to the Transition Pre-K at a different school. He will learn to adjust to being tube fed at school, the allergens he MUST stay away from, and improve his Speech. His overall delay is as follows: AGE: 60 months Cognitive Age: 53 months Speech Age: 3 yrs 11 months So we have some catching up to do. BUT HE WILL DO IT!!!!!! Ok, so that got long winded, can you tell I'm lacking in adult socialization...LOL I will update again soon. I'm just letting Zach spend as much time on here as he wants. If anyone wants to drop him a card it can be sent to: Zach H. P.O. Box 1753 Columbia, Tn 38402 Just keep PRAYING!!!! Love, Ashlie, Zach, and "Showstopper" Nate :) UPDATE: 5-12-07 YEAH!!!! All the hard work of APFED volunteers has paid off!!! Today bill H.RES 296 goes to the floor in DC!!! At 8pm last night Congressman Steve Cohen (TN) called to tell me he would be happy to co-sponser the bill in the State of TN!!! AHHHH!!! I feel like I have accomplished so much with only a few faxes, and follow up phone calls!!! These Dr's across the country will soon have to recognize this condition!!! Who would have never known 4 yrs ago that EGID would have it's own Awareness day!! The discussion can be viewed today on C-Span.. So next week May 13th -19th will be National Eosinophil Awareness Week!!! Please wear your Fuschia and Black ribbons in honor!!! Please email Mr. Cohen and Thank Him for his support!!! His birthday is Sunday he will be the BIG 5!!! His party is tomorrow :) Much Luv and HUGS!!!! Ashlie and Nate UPDATE: 5-9-07 OK, my head is reeling.... Yesterday Nate's Ortho called and they had decided to put him back in inserts. When I took him into the Orthodic place, the Podiatrist couldn't believe Nate's feet and ankles were so bad, he asked me if they had any idea what had caused this, and that ankles are a mess. So Nate will now go into braces, I take him back Friday afternoon to have his legs casted for impressions.. This is only to "try" to correct a problem, he will still need surgery. We are just hoping to wait a little longer. WOW!!! His legs hurt nearly all day yesterday, and he's pretty much down. He is at preschool today. I was instucted to use Lortab 7.5 and Motrin as needed. These braces are also going to hurt him badly until his legs and feet adjust to them. Then I go onto find out there is little to no insurance coverage pending what he gets exactly. So I am going today to set up a medical only trust fund for him. I have been up since 3:30am worrying and crying. It seems as if the last 5 yrs is really wearing on me. I can't believe he will be 5 on Sunday and can barely walk, is still 100 percent tube fed, and on and on.. I will not throw myself a pity party. I'm actually going to sue Social Security.. I do have a lawyer to take my case. Point be known, that regardless of a persons income a child that is medical or terminally disabled should recieve help. There should be resources for the families. The government encourages us to keep a family together, stay out of the welfare system all the while pushing us closer and closer into it. I know I am up against a hard bunch, but I have a great lawyer and possiably a Congressman backing me. I'm pushing to have this hit the Tennessee Legislative floor in Jan. 08. I will keep you updated on that. I'm going to close for now. I'm asking for prayers for: * Nate's Pain * Nate to have a fun pain-free birthday party on Sat. * I pray that I can find some comfort within to keep my head up and never ever stop the fight * My own personal health, which I'm having issues with. Until Next Time!!! HUGS, Ashlie UPDATE: 4-18-07 Just a quick update since my time is very limited.. Things are still really emotional on my end. I'm fighting with insurance, SSI, and the school system.. I just ask that you PLEASE continue to pray for peace and comfort for Nate and I... Sorry if I haven't returned email or phone calls, I'm just really in a funk and I'm trying to pull myself out of it. And I'm sick on top of that. Love, Ashlie UPDATE: 4-7-07 Ashlie's computer is down and there will be a delay in updates and email responses. Keep Praying for Nate & Family Shay UPDATE: 3-15-07 Just a quick update!! Nate is doing awesome, and his weight is down about a pound. He's still a little round cutie!! I could just squeeze him... He see's Pulmonary on Monday, and gets a new button. Just in time for the beach!! I have alot to do in the next week, so I may not update again... I have to make lists, clean house, get some loose ends tied up, get my hair done, and last but not least board the kitty..lol Will update again soon!!!! Ashlie UPDATE: 3-10-07 I took Nate yesterday for his post Pnemonia check up. He weighs 50.3 pounds. His Ped. had a fit. He has been on Prednisone since Feb. 3rd, so he has packed on the weight. I spoke with his Nutritionlist and we are now diluting his formula to 24 cals. an oz for a total of 1500cc's of tube fed formula, as well as 500cc's of Pedialyte to keep him hydrated since he will drink anything by mouth. Hopefully he will level out. His asthma is out of control with his weight being so high. He also woke up yesterday with a nasty rash on his back. He's such a rashy child that we have no idea where it came from. She diagnosed Contact related, and we are using 4 percent hydrocortosone (forgive my spelling today, I'm out of it.) Nate has also gone back to having autistic issues, and his OCD has increased. She changed his Zoloft to 40 mg's and increased his Atarax at bedtime to 15mgs. He slept better last night, and seemed happier this morning. I'm sure his meds needed adjusting due to the weight gain. The kids are going nuts waiting for our trip to the beach. I'm making lists and preparing for Nate's first trip being tube fed.. I'm doing alright. My doc gave me a new med to help me keep going. I just can't get enough rest trying to balance my kids. Thats why this entry my seem weird with lots of misspellings. I'm very jittery, and just not tolerating it well. I'm gonna run for now. Got lots of errands to run, before I get Nate noon. I will update again soon. Love, Ashlie UPDATE: 2-23-07 Now, my update.... Nate is slowly recovering. It's taking longer than I thought, but we didn't have to do IV antibotics. And of course liquid takes longer to work. His cough is still VERY wet and junky. His nebs were changed from Xopenex to DuoNeb and I'm still doing the Pulmocort. He's also on Prednisone still, and Clindamycin (SP?), with a 30 minute pre-med of Benadryl, along with all his other meds. Bless his heart, he has had a rough go of it. He's coughing so hard his mickey button is leaking from the stoma site. I called the surgeon yesterday and they said that was normal and to add up to 10cc's of water to try to stop it. He's at 9cc's and it's better. If it doesn't stop he will need to be measured and his button changed again. He's been out of school all week, and I'M hoping he can return on Monday. The Prayers I ask for: *Nate's body to continue to respond to the medications *Nate to stay in good spirits and keep smiling, he's keeping me going..lol *For me to get some rest and some help (his antibotic is given every 6 hrs and he gets Benadryl every 5.5 hrs).. I'm getting little to no sleep with his med schedule *And for Zach to continue being the great child that he is. He's is such a trooper. He knows Nate so well, that he will grab towels, diapers, gauze, tape, etc.. without me even having to get up or ask. I hate that he helps, but I'm so proud of him I will close for now. Zach is doing Jump Rope for Heart today in Honor of our friends The Grace Family. He raised a nice amount of money. He's excited, and I can't wait to hear about it when he gets home this afternoon. Love, Hugs, and Lots of Elmo Raspberries Ashlie and Nater Bug AKA "TO" Mater as he wishes to be called now (LOL**giggle) UPDATE: 2-20-07 Nate is still very sick and his steriods were extended yesterday another 3 weeks. His Chest-xray showed Bronchulitis (SP?) He had this as an infant. So we are to give his treatments every 2 hrs, use inhaler for breakthrough, and continue steriods. We are also decreasing his feed rates for a few days. Now all we do is PRAY!!! We are on borrowed time, and I know that Nate will end up in the hospital by the end of the week. He always has, I'm keeping the faith, but sleeping with one eye open. I'm gonna run. Time fo his treatment and his morning feed. WOW!!! Gonna get my exercise today...lol Love, Ashlie UPDATE: 2-11-07 Nate's asthma is VERY flared up. It had gotton better, and know it's really bad. I just hope we get through the weekend. I'm very sick, and just trying to keep him cared for. Ok, so our down time was short lived. Nate has a really, really bad cold. I'm going to take him to the Dr. Monday morning if he makes it that long. If not I will take him to the local ER. No wheezing yet, but I'm sure it's coming. I will update again later on in the week. Ashlie UPDATE: 1-29-07 I just wanted to say Thank You for all the prayers and well wishes. It has been quite a weekend, with not enough sleep. My Dad is still hanging in there. I was considering going to see him today, but I just can't. I'm so tired, and my body is really feeling the stress. I'm just going to try to take it easy. Some of you may know that my father and I have had a VERY strained relationship since I was a small child, so this whole thing is very bittersweet for me. I'm so unsure as of what to do or how to feel. I know it will come to me, and I will know what to do. I just hope it isn't to late. My Mom is doing fine. She is having alot of heart related issues. She sees the Doc again this week, and hopefully we will know whats going on and what "she" can do to fix it. My Mom is alot like me, she tends to bear everyone elses burdens and put herself last. Not a bad trait, but not a healthy one either. I have talked with her several times this weekend, and she's just resting. She's not working today and is having a 24hr holter moniter done. They seem to think it's a hormone, thyroid, stress issue. I hope thats all it is. I'm finally at a point in my life where I'm trying to fix past problems with my family. I'm trying to learn to forgive and forget and get passed all the hurt that I went through until I was an adult. While my Mom has always been there, her and my grandfather were the only ones. I have decided to start therapy twice a month to help me with this. It's clearly not something I can do on my own. Nate is doing wonderful still. I promise to post new pics as soon as I can. My batteries have been dead in my digital camara since November..lol His little tubie is still growing granulation tissue, and was actively bleeding last night. Not much I can do except continue to treat it with stuff I have at home. I'm going to call the surgeon this morning, and ask for a special cream since the Alum is burning him so bad that he's needing small amounts of a pain meds. before I treat it. The Pros of his tube still outway the Cons, and I'm so happy that he's happy and very healthy. He will be following in his brothers footsteps..lol He's playing T-ball this year :) I'm so excited and so is he. I NEVER thought I would see the day that he would be hitting a ball and running bases. I will be helping coach the team to help provide Nate more safety. I will also still be the team mom on Zach's team.. WOOOO, this should be a balancing act..lol But I will pull it off as I always do. No one really knows the daily stress I go through since I tend to hide it very well, even from family. I throw my own little pity parties and try not to inflict my heartaches on anyone else. Shay (Chayces Mom(mi/ckyle)) and I chat daily. We have grown to enjoy venting and crying about things...LOLOL Zach is doing great. He got to spend lots of extra time with Paul this weekend. I just needed the time with Nate. I get so much time with Zach, and not enough one on one time with Nate. Seems that I'm always cleaning his tube, or dealing with feed issues, or Dr's appts. I can say that yesterday Nate and I snuggled up for 2 hrs in the chair and watched Spongebob..lol Well, I'm gonna run. My home computer is really acting up, it won't even come on!!!! I will update again in a few days when it's running again. One of the kids did something to it...lol Until next time :) Love, Ashlie UPDATE: 1-27-07 FRI EVENING UPDATE Please keep Ashlie in your prayers she just found out her father is suffering from liver failure and his time here is very limited. I don't not expect her to be updating here soon, as she is spending time with her family. As well, her mother is going through a tough time with some heart problems and a long time family friend was just diagnosed with Breast Cancer. Prayers are needed! SHAY UPDATE: 1-26-07 Ok, so do you ever just feel so tired and overwhelmed that you want to runaway? Nate is doing great, and that is such a blessing. But I on the other hand am not doing so well. Nate's tube starting bleeding last night, and he was VERY behaviorally challenged yesterday. He does have some granulation tissue, and I'm hoping thats what is causing the slight bleeding. This morning it was better, but he had alot of drainage which too is normal with granulation tissue. I just hope this is me freaking out because he's never had bleeding from his tubie except after I treated his stoma for the tissue. He slept great last night, and I even had to wake him up for school this morning. So we are past that thanks to a 5 mg increase in his Zoloft and 10 mgs of Atarax with his midnight feed. I'm just not getting any sleep. I'm a night person and can handle staying up for a few nights than I just get run down, and icky feeling. Zachary isn't feeling well. He's had a sore throat for 2 days, and some sinus stuff. No fever, so it's probably just this crazy Tennessee weather. I'm not feeling well either, but I think mine is lack of sleep. I just hope he's not getting Strep, if either one of the boys get it I usually have it within 24 hrs..lol I'm so prone to it for some reason. Even though Nate doesn't have Tonsils or Adenoids he has still gotton strep. And there is a tummy bug going around his preschool class...LOLOL I'm just hoping we have stayed clear from the Yucks, and everyone stays well. I probably will not update again over the weekend, I don't know that I will even be checking my email. I need a little break, and I have got to get one somehow. Zach has a gymnastics B-day party to go to tomorrow, and I was going to take Nate. But now thats pending his tubie drainage. Oh Well, I will close for now. Just needed a small vent. I'm getting all my errands done this morning so I don't have to do anything this weekend. Love, Ashlie and Nate UPDATE: 1-24-07 He's sleeping now since his med adjustment. He saw his surgeon yesterday and his Mic-Key was replaced. He was having lots of tummy juice leakage and it appeared dislodged. His button was a bit big. He was a 14 x 1.7 and is now a 14 x 1.5. He did GREAT!!!! No pain at all, just scared him a bit. I think he thought he lost his life line, or "his better half" as we call it, lol. He's such a trooper, and Ms. Toni is a wonderful nurse and friend. His weight is wonderful!! He's 43.6 lbs and 39 3/4 inches tall!!!! YAY!!!! Below is another little APFED video. I encourage you to watch it. I have done fundraisers with APFED and CURED, and I'm soon going to be working with Childrens Magic on passing a bill in the State of Tennessee that will mandate formula coverage for children requiring special formulas. Most insurance companies will not pay for this expensive formula even when it's all your child can have to survive. This also helps those of you that are unsure of what EGID is to better understand what life is like. Nate has a ton of medical problems, and his Eosinophilic Disorder is and probably always will be the MOST life altering. I'm going to close for now, but will update again soon. Thank You for all the Hugs, Love, and Prayers!!! Ashlie and Nate UPDATE: 1-21-07 Nate has now regressed back to his none sleeping days. We bumped his Zoloft back up on Thursday, and added Melatonin. He's only sleeping about 5-6 hrs in a 24 hr period, and is a danger to himself. Example (LOL): He got up at 6:30am yesterday morning, went to preschool from 7:30 to 11:30am, no nap, played hard with Zach, in bed for the night at 7:45pm, up for the day at 1:20am. I fell asleep in his bed with him, and found him at 2:45am in the living room. He had turned off his pump, and left the room. Once in the living room "he" removed his extenstion!!!! He could have pulled that button out!!! This has been going on for over a week, and getting worse. I'm calling Kari today, to see if she can come and do some therapy this afternoon. I'm also calling his Ped. Monday morning. This is insane!!! And not good for him, he needs sleep. Ok, I'm done venting...LOL I'm gonna go try to rest, and just maybe my house will clean itself..lol Love, Ashlie UPDATE: 1-17-07 Nate is doing very well. He's tolerating his feeds much better now that his reflux meds were changed. He's back in preschool 4 hrs a day, 3x's a week and LOVING it. We are cutting his Zoloft back from 25mgs a day to 20, to see if he "really" needs it. He does but probably not such a high dose. Zachary is excited, ball season is starting soon. You all know we are a Baseball kinda family. Hopefully Nate can play T-ball this year. He will be 5 in May, but I'm not sure when the age cut off is. Zach will be starting Counseling. He had his 9 yr well child checkup last Thursday. He's wonderfully healthy!! He's just having alot of fears and anxiety, and the Dr. said thats normal at this age. And he has been through alot. I see the Dr on Friday than he has 5 sessions with Zach, then he sees me again. It is play therapy so I'm sure it will be very productive. I'm gonna run. Nate has behavior therapy, and OT today. So we have a crazy busy day :) Love, Ashlie UPDATE: 1-2-07 Is it really 2007?? Gosh, where does time go? Zach's birthday was great even though I'm sick...lol He had alot of fun, and my nephew spent the night. Nate is doing better just a little asthma that hopefully won't amount to anything. He is amazing. He's such a little chunk weighing 40 pounds now..lol But he's also talking more, and his behavior is improving daily. The finger clubbing he had has now resolved itself. Although his tube is very time consuming, and lots of lost sleep, it's sooo worth what he and I are getting in return :) Just wanted to update really quick. Nate has Behavior therapy and OT today, and I'm still feeling icky. The kids go back to school tomorrow, and I really do not want Nate to go back. But he is, not all day. He will go from 8-12 with no feeds at school. I'm going with him for 2 hrs tomorrow to slowly transition him back in. He's been through alot since he last went, and I want to make sure he's all right with it. I will update again tomorrow afternoon with how it went. HAPPY 2007!!! Ashlie, Zachary, and Nate ADDED: 6-15-05 Condition=Eosinophilic Gastrointestinal Disorder, OCD, Disruptive Behavior Disorder, Heterochromia, Hypotonia Comments: Nate has a Rare Auto Immune Disease known as Eosinophilic Gastrointestinal Disorder or EGID Click Here:~What is EGID?~ It effects his entire GI Tract, top to bottom. Nate is unable to tolerate any foods, and relies strictly on an Amino Acid Based Formula known as Neocate One Plus as his sole source of nutrition.It is not known if Nate will ever be able to tolerate food of any type again (to date he has failed apple, banana, green bean, corn, rice,watermelon, and grapes). Nate also has Chronic GERD, Chronic Lung Disease,Asthma,Right Upper and Right Medial Lobe Atelectisis, Delayed Esphogeal Emptying, Anemia, Many Food Allergies, Inhaled Latex Allergy, Multiple Environmental/Seasonal Allergies,Heterochromia, Hypotonia, Mild Hyperlordosis, Hypermobility of Joints,Aspergers,Disruptive Behavior Disorder, Obsessive Compulsive Disorder, Cognitive Delays, Moderate Sensory Integration Dysfunction, and Moderate to Severe Speech and Developmental Delays(age equivalent 14 months). He's been hospitalized 29 times. With 19 being for Respiratory Distress Syndrome. Nate also takes 13 various medications a day, and requires frequent breathing treatments. Nate has a Nissen Fundoplication. He underwent this surgical procedure at 11 months old for severe GERD that was unresponsive to meds and for severe aspiration. Nate's Fundo only lasted about 11 months, and for whatever reason seems to have stopped functioning. His reflux is back full force. He is still having chronic aspiration, and now ulcers in the back of his throat. He was put on a medication to help treat the ulcers, but he was allergic to it and we had to stop giving it to him. Nate has had this horrible reflux with aspiration since birth. At 5 months old Xrays showed what his Dr's thought was Pnemonia. After 10 days of IV antibotics, Nate was as sick as ever and required 24 hr oxygen. He had his first Bronchoscopy at just 8 months old. It was then determined that this was not pnemonia, but aspiration. It is in his Right Upper, and Medial Lobe. Nate gets out of breath very easily and has trouble playing with others, because if he gets excited and starts breathing hard, he has some sort of asthma attack. He has permanent damage to the right upper and medial lobe of his lung known as Atelectisis. His lungs to not work to full capacity. Once he's old enough for PFT's we can see the extent at which he functions. We watch him closely since he has had aspiration pnemonia 8 times. Nate recieves OT, Speech, Physical Therapy,Aquatic Therapy and soon starting Mommy and Me Gymnastics (for whole body strength building). He has severe Hypotonia. His Developmental Pediatrican told us that most children with this degree of low muscle tone do not walk. Nate was a late walker, but bless his heart he did it. Nates speech is still pretty impaired. Zachary and I are the only ones that can understand him most of the time. He has about 20 words, and is improving weekly. He's been recieving therapy services for 20 months. I decided to skip the Behavior Modification, and try Hippotherapy. Nate loves animals, and I think he could really benefit from it. I chose to not use any medications for his problems, but to try love, lots of therapy, and just pray it works. After a followup with his DP, Nate finally has a diagnosis of Aspergers and Obsessive Compulsive Disorder. Nate is now wearing little Orthodic Inserts in both shoes for Bilateral Ankle Pronation and Fallen Arches. Prior to the supports Nate was only able to run a few steps without falling, and he was complaining alot of foot and leg pain. He has been running more with less falls!! YEAH!!! :)But he still doesn't have any reflexs in his legs. It just amazes me and his DP that he is able to walk, balance, and run. Nate is a Happy, Fun-Loving, little boy that just turned 3 on May 13th. He loves The Wiggles, Scooby Doo, Elmo, Nemo, Sponge Bob and Stitch. He is the light of our lives, and he and his big brother Zachary have a very special bond. Nate brightens everyday, and he's my shining star in the night when he's awake because he feels bad.