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Evan's Journal!
TodayEvan has been doing really well. He is gaining weight and has been strong. I feel so relieved and happy because Evan is happy. I have a good life. We went to Prescott for a reteat on " Children with special needs", and Evan was the only child there. He loved all the attention he got!He was showing off his "faces" and talking and being the center of attention. He loved it and I did too. We felt so accepted and no one pittied us. I saw Evan's confidence soar. I also noticed again what a great husband I have. Garth would bring me snacks(Evan and I did not attend the conference we hung out at the hotel)or come check on us. Garth is so thought-ful and considerate over us I just love that. I also read " When God doesn't heal Now" by Larry Keefauver and that book helped me out tremendoulsy on my feeling of betrayal by God. I now realize I have not been betrayed but I had the wrong expectations. I love Evan, I love Garth, I love my parents and sisters and I do love God.
TodayEvan slept really well the last two nights I only got up once to turn him! I feel so rested ahhhhh!!!Grandpa Tom is here visiting from Canada , we are enjoying his company. I have a beatiful testimony I must record. I read half of the book "extraordinary people Extraordinary faith" by Joni Eareckson Tada and it brought me down. I was scared that if God would allow for so many of his children to go through all that those people went through then why would He help me? Well I was mad at God yesterday, but I left a messaege for the author of "When God doesn't Heal know" by Larry Keefauver telling him how his book helped me out a lot and how grateful I was for it. Well this morning he called me back and left a message on my machine! I feel so honored to get a call back. This author gets tons of calls from lots of people. I realized the Lord used this man and will use this man to help me and that tells me God is thinking about me and won't let me go. I love that. Thank you God for being such a good father. Evan is doing great and I am happy.
TodayWell, Evan is sick with a cold. It's so frustrating and scary when you have a cold, baby. I feel confident though that I can keep this cold under control. The weather is really nice out and I hope this is the last cold you will get this season. I love you Evan.
TodayEvan still has a cold but he is doing fine. He is sleeping without moaning and groaning and has not needed medicine to control it I feel confident that this cold will pass without any problems. Grandpa Tom left today and we miss him. Evan has been looking for you but he's been calling you "Tom" rather than "grandpa".Thankyou for coming, we apprecite the sacrificies you made to come see us. I am so happy Evan is doing so well strength wise. I also appcreciate how God uses even forwarded emails of encouragement to tell me he is thinking of me.
TodayEvan is still dealing with a cold, but he is happy and sleeping fairly well. Evan and I are so interactive with each other that he gave me his cold. Oh well.It's getting hot here in Arizona today it's about 100'C!! We've been doing nebulizer treatments, chestphysiotheraphy and lots of the cough machine.
TodayEvan is doing fine. He still has a cold but it is now reduced to a lot of coughing. We are using the cough machine quite a bit and that really helps. I have had to give him medicine though. We have been going out almost everyday and we are both enjoying it. I am so grateful Evan has not had his extra floppy days in a long time. Thankyou God.
TodayEvan got over his cold and cough and even with that he was not having "floppy" days i was so grateful, shocked ,hopeful, and relieved. Well he got a runny nose again today and cough. It seems like he gets a cold evry two weeks. But it takes 3 weeks for him to get completely over the last one. I belive this one is not severe and we will be able to handle it at home again. I just hate the sleepless nites and a cranky baby but I am glad to not be in a hospital. Well Evan is entering his terrible two's and i love it. I should discipline him but I love the stubbornness and the fake cries and manipulation. It makes me feel like a have a "normal" child and I love that. Garth and I always get along well but I have been extra nice to him for some reason and we have been getting along great. I also started to take Evan to play group and it's very hard for me emotionally but I do it to enhance Evan's social skills. I hate going and I am ususally depressed when i come home but I am proud of myself for going. I believe it's good for Evan to see other kids.
TodayI thought Evan was over his cold but I guess not. He is still coughing quite a bit and a lot of sinus drainage. He is taking medication for congestion and we are doing nebulizer treatments, cpt, cough machine, and bipap. I lowered his setting to 12 from 16 since he doesn't tolerate the high settings right now. Thank God he is still happy.He sweats a lot though. I hope he gets over this one soon.
TodayEvan is doing Great Thank God!! He has learned to talk so much that they have taken him off of speech therapy!! The first really good progress report ever!! Also Evan counted from 1-5 in spanish all by himself yesterday what a smart boy!!! I am very proud of my intelligent little boy.
TodayEvan is still doing well Thank God. We have been going out a lot which I feel makes a big difference for the both of us. We feel good seeing other people and just plain enjoying life outside our apartment. We have also been going to play group at the boys and girls club. I am very proud of myself for sticking with it because it was extremely difficult at first since Evan is the only "special needs" child there and everyone stared at us and did not know how to approach us. Now they are finally relaxing and so am I. Actually I am thinking of registering us on the mothers and tot swimming, again I will have to get out of my comfort zone and put my feelings on the front line but I will try not to give up and keep going. Everything I do I do for Evan.
TodayEnjoying Evan all the time. He loves to talk and I am trying hard to teach him his abc's and numbers. He is a smart boy and his intelligence is his strength so I want to build on that as much as I can. I am so proud that Evan hardly watches t.v., actually today he did not watch any at all. He usually averages from 1-2 hrs of t.v. a day and I am very proud of that. It takes me not being lazy and constant entertainment of my part to since Evan does not play by himself due to lack of muscle strength but I believe that the stimulation he receives by not sitting in front of the t.v. all day keeps him well. When Evan is sick I do relax on the t.v. restriction since I know I like to sleep of relax when I am sick. We had a great day today. I went to my art class today and Sara and Evan went and did chores and Garth and I did not turn the t.v. on and we sang songs and played with Evan went to the pool, Garth baked cookies, read books and finally the boys fell asleep. I loved having the t.V. off we were so much more of a family. We tried to make a "memory" of today and I felt the Holy Spirit because we were all content and at peace.
TodayGarth took Evan on a little train ride in Laughlin today. I was lucky to stay home and sleep in and just have time to myself I cherish those moments.Garth took Evan all morning which is nice for both of them to spend time alone with each other. Evan is a lucky little boy to have a great daddy like Garth. Garth and I went to the library and picked out some books for Evan I want to concentrate in teaching Evan the joy of books. I want him to be a genius!!!
TodayEvan had a bit of a cough and some snezzing which always puts me on alert and some fear. Thank God it comes and goes but it is not a cold yet. Today we went to the library were they had reading time and singing. Evan is always shy at first and then when the class is over he is more outgoing.This is only the 2nd time we go and I hope we can go all summer. I look forward to everyone getting used to seeing us there and me feeling more comfortble. Deep down inside I hate being "stared" at but to keep going is a challenge for me. I guess Shakespear was right about the "fear" stuff( I forgot the exact quote).I am taking cultural anthropolgy through distance learning and my midterm is on thursday so Evan and Daddy have been best buddies in the evening while I study. It's good for them and me. We are still doing the no t.v. thing and I love it. Before bed time Evan and I go over the abc's and numbers and we sing songs. I hope this becomes habit. I must say I am a better mother than I ever thought I would be perphaps it's due to sma also all the mothers who see Evan and I, go home and appreciate their "healthy" kids. I know we are making a difference but I sure wish it was not at our expense. I cried yesterday I hate sma. Today at p.t. some one asked what was wrong with Evan and the p.t. told him and he said" wow so young" it really is a sad and horrible disease. I am trying to be as normal as possible with Evan as I involve us in as many possible activities. Perhaps if I had a friend who would go with us it would be easier buts thats another story.
TodayI have been busy with school so I have not had too much time to be in the internet. Evan is doing well Thank God. Actually he is doing great!! No miracles or physical improvements, but the fact that he is really healthy and no scary colds or sickness is what makes us happy. We are attending swimming lessons for Evan. I go in with him and there are about 4 of moms and babies. Ofcourse Evan can not kick or I don't think he could learn to swim since he does not have the strength even in the water to make his body move, but he enjoys go swimming and being with the other kids. I like the class because it is self paced. IF teh children can not or do not wish to try something then we do not pressure them therefore Evan and I really only go for the social aspect of it and the sense of normalacy. I am presently at the library writing this. OUr computer is slowly dying. Glad to be doing well and looking forward to mom and dad's move to Arizona. I know it will do good things for Evan and I.
TodayWE have had to travel to Flagstaff twice this week. I am sick of going there. I hope we do not need to go again for a while.Flagstaff is where Evan see's the specialists it is about 3.5hrs away. Evan got his specialized stroller-kidkart yesterday. He does not like it. It seems complex,bulky,wheelchair like, and I do not like it much either,but it is supposed to give Evan better support so we will see. We have to get used to it. Evan finished his swimming lessons today. I signed him for for another two weeks lessons. Thank God Evan is still doing great. He weighs 23lbs 14oz. I hope he weighs 25 lbs for his 2nd birthday.
TodayEvan and I went to Utah for the motor neuron study. It was nice to see Dr. Swoboda and Adam and the nurses again. Everyone is soo nice there. Evan ofcourse loved being the center of attention and being told he was so handsome and smart. We got hopeful news, Evan has 3 smn2 copies versus two which means when they find a way to make the body release smn2 protein then Evan should release even more!! Smn protein is what nourishes the nerve cells. Evan's body is not producing smn protein but our bodies have a back up smn2 protien but the scientists can not figure out how to make the body release the smn2 protein. That is what we are praying for. Evan is still doing great!!Everyone in Utah was really impresed by how well he is doing. Evan has been putting on weight and is talking a lot and is just enjoying life. He is getting used to his kidkart and so am I. We get stared at a lot but I need to get used to that. I will fight my feel sorry for me temptations. Garth and I love each other and we love Evan soo much. Life can be good too. My computer is officially broken. So I need to go to MARIAM'S or the library and keep in touch.
TodayI just re read " Evan's story" and everytime I read it I cry. I must say that sma has made me ONE HELL OF A MOTHER. I am so proud of myself for putting my heart out in the open every day. I do fight jealousy, fear, exhaustion, depression but I DO step in my own heavy shoes again everyday and I will. My love for Evan is greater and more powerful than sma. Sma made me a great mother. I respect myself for facing my fears everytime I get stared at and evertime I see a healthy baby. I do not wish to be in this boat but I will not get off because MY baby is in it and I will not abandone him. I adore you Evan. Mommy
TodayEvan is still doing well. I have been trying to use the cough machine atleast once a day weather Evan needs it or not. I am glad Evan works with the cough machine rather than fight it. I count for him and then he knows that an end of the session will happen. Evan is now counting from 1-10 in both English and Spanish.I am very proud of that. He sometimes misses one number but as the right order. WE are still enjoying a summer full of toddler reading time at the library and swimming at the public pool and play group at the boys and girls club.
TodayBoth Evan and I are used to the kidkart. It's a pain to put in the car in and out but it sure gives Evan more support.Swimming and library story time is over for now so Evan and I go hang out with ABUELITO AND ABUELITA(spanish for sweet grandpa & sweet grandma).Evan and I love having them here. I am so proud to have parents whom gave up their life in Florida to come and give moral support to their children.They truly are unselfish. I am so Blessed to have my folks for my parents. Evan adores Abuelita. She gets him hyper which is great. His confidence is rising and he is getting even more spoiled( more T.V.).Evan loves to go out and now we have a place to go to where we are always welcomed and adored. I love the way mom and dad take Evan out with pride. I am so glad they are here. Garth and I are doing well. We get along the majority of the time. I am very lucky to have Garth for my husband.
TodayWe are really enjoying having Abuelito and Abuelita in BullheadCity. I can see it is good for Evan's self esteem. We visit everyday and Evan see's his beloved cousins everyday too. Enjoying life!!
TodayI Loooove looking at Evan's web pictures and any pictures that have him on it. To think that I used to wonder and hope that would be cute.That he would have his daddy's nose and not mine. I used to look at children and wonder if Evan would resemble them? Evan's looks would occupy my mind and worry me because shallowly I hoped he would be atleast average looking. Gosh, Evan in my mind is off the charts in looks. I think he is gorgeous. I am so proud to have such a handsome little guy. I just think back and wished I would have consentrated in praying harder in his health.I never thought Evan would be this cute and I never imagined he would ever be born with something as horrible as sma or any physical handicap or anything out of the ordinary. All I can do is pray now for healing and self acceptance and joy and lots and lots of laughter in my son's life.
TodayI went to weigh Evan today and I am so excited that the goal of 25lbs by the time Evan is two has been matched and beaten. Evan is weighing 26 1/2lbs! That sure makes me happy. He looks chubby and feels it too. The average weight for a two year old is about 30 lbs so Evan is just a little under but has made great gain since he was really underweight 6 months ago. Unfortunately Evan cannot be compard physically to an average child but being behind a little is great news for me. Muscle weighs more than fat so Evan is FAT and I love it. Thanks God for that answered prayer!!
TodayEvan are and are really enjoying playgroup. The kids are accepting Evan and want to hold his hand. That is such a triumph I faced my fears and I won for Evan's sake. I realize this is not over but a simple trivial battle, I realize I have greater ones to win yet but I am proud and should be. Evan is participating more aswell during playgroup, he sings and wiggles his fingers(I must hold his arms up)and knows the names of some of his peers :)
TodayToday is your birthday Evan!!! You don't even know it. Right know two years ago I was really nervous about the whole birthing experience I was about to undergo. I was mad at daddy because he did not want to go for a walk with me in the morning he slept in instead. I wanted to go for a walk to help the labor process. I was going to be induced. The nurses were great and Abuelita was here from Miami for the experience. Auntie Mariam was there too. Daddy was very anxious to finally meet you. I was too drugged up to really bond with you right away but I loved you from day one and I love you more every day, more and more. My wish for you is happiness in your life. Forever in love with you Evan. Mommy.
TodayEvan's birthday went well. Garth and I sang Happy Birhday to him as soon as he woke up.Evan had no idea it was his birthday but enjoyed all the attention anyway. We went out for breakfast with Abuelita and then left Evan with her and the boys so that Garth and I could get things ready for the party. Evan took a nap and Abuelito and Abuelita came over to help. Garth and I decorated the clubhouse while mom and dad cooked and gave Evan a bath and got him ready for the party. The party was fun the kids played games, got prizes, we ate arroz con pollo which Abuelita made and every body complimmented her on, broke the pinata, sang happy birthday to Evan, played musical chairs which was really funny, opened presents and cleaned up and finally went home. Abuelito and Abuelita were a tremendous help. I held Evan while we hit the pinata together that is about the only thing Evan participated in games wise. It was comforting to see Evan turn two. It was sad to see kids his age have a great time at Evan's party and Evan just watch.I thanked God for giving Evan a chance to turn two and let me have him for two years so far. Whenever sadness filled my heart I just thanked God for allowing me to have Evan and peace filled my heart. I believe I will see Evan celebrate more birthdays in Jesus name. thankyou to all those who thought of us for Evan's birhtday.
TodayWe went to see fireworks last nite and Evan really liked them. At first he was scared then he asked for me to hold him and he felt better. I cheered at the fireworks and pointed out their colors and he thought they were fun after that. Evan is doing well health wise still and we are comfortable and at considerable peace with that. I am really excited about buying a house. I can't wait to sign the papers and have the keys!!!!
TodayTook Evan for his wellness 2 year old check up and we weighted im and he weighs 27 lbs!! He is getting chubby and I love it. I also got the Dr. to sign a handicapp placard for the car and today I will take it to the motor vehicle division to have it all taken care of. It's a sad thing to do but that's the way it for now. Evan is still doing great. He loves to sing his abc's! He is enjoying Abuelito and abuelita and they are enjoying him. Evan loves to take naps in their bed. I guess he thinks it's adventurous to not sleep in his crib all the time.
TodayEvan is sick!! He has a bad cough and keeps choking on his mucus. He is not sleeping well at night and keeps wanting to be turned every 1/2-1hr. I hate getiing up so many times during the night and it's not only one night it's evry night. I wish I could take a nap with Evan during the day but with school I need to take advantage of the quiet time. Evan is not that sick, but it could get much worse or he could get better that is the problem. It had been a awhile since Evan was sick and I want health again for his sake. We are using the cough machine quite a bit and it helps to remove some of the mucus. I am trying to give Evan water but I do need to give him his formula too which has milk and milk is a producer of mucus so that is kida scarry. Garth is sick too. Evan gave him his cold. I hope I don't get sick I don't have time for that and Evan needs me- healthy.
TodayEvan still has a bad cough,but he is not acting really sick. He just needs alot of cugh machine which does pull out some mucus then I suction the mucus out. The cugh machine does tire Evan out. Thank God Evan is sleeping better. I feel so tired lately I think I am a little bit emotionally stressed/ I get worked up when Evan is sick. Garth is almost back to normal. He still has a cough which intensifies at night of course, so he has been sleeping on the sofa because there is no sense in all of us been keept up. We are very anxoius and excited about the new house!! Friday Sept.27 2002, is the day we will sign our lives away to the bank! I am trying to take Evan out atleast once a day, I believe we need distraction and get out of the house otherwise we feel more sick.(Thanks for your concern Lorraine-thanks for the phone call).
TodayIt's been a long time since I wrote here, but we have been so busy with our new house, we still do not have our computer plugged in yet so I am at the library and I should be studying but this is more fun. Evan is better from that bad cough he had. He still has sinus drainage which makes him choke but he is better. I enjoy Evan so much and he is so much fun to be with. He is very demanding but I enjoy him tremendously. I feel guilty since I have not been spending a lot of quality time with Evan due to the house, but I do take him with me to watch me organize and unpack. I try to keep him entertained, but sometimes I just have to let him lay on the floor and try to have him entertain himself. I have also started to take him to playgroup again and I feel like a good mommy again. Garth is doing well too we are very happy with the house.
TodayI am at the library again since my internet is not hooked yet..soon I hope. Evan is doing great again. He is healthy and putting on weight, he is getting too heavy to carry so i try not too carry him too long but he likes being carried. The house is organized and it feels great to be in and live in it. Garth laid the hard wood floors and it makes it look bigger, cleaner and more elegant. I love it and I am so proud of Garth. Evan is now used to the new house. WE enjoy sitting on the patio outside in the mornings.
TodayEvan is doing really good. We are enjoying the house and it feels like home now. I love Christmas and so I really want to decorate it. Hopefully today I will put the outside lights on. I want to make look very festive for Evan. HE loves the Christmas tree and the pretty lights at night so I think we should go all out for him. I've been telling him about SAnta and he is excited but I think he will be scared of him too. He says he wants "toys" from Santa. So I better wrapp some up. He will really enjoy having lots of people over specially his cousins.
TodayWell our healthy cycle ran out. Evan has a cold. I had forgotten how hard it is when Evan is sick. He doesn't sleep well so we don't sleep well. We can't go out and we get bored of being home. We have to do a lot more work such as chest therapies and a lot of cough machine and suctioning which Evan hates and it breaks my heart to make Evan go through all this ----! I hate God when I see my son cry and hear him tell me his body hurts. I hate God when I see the demon(sma)weaken my son even more. I get so scared when Evan has a cold it is soo emotionally stressful. I take my fear and convert it into anger and take it out on Garth. Thank God he understands and ignores me although I konw I better stop doing that. In my defence though I am the one that is home bound with Evan. I am the one that must use all these machines on EVan. I am the one that must try to comfort him and I am his mother. I just can't imagine having Evan be that bad and in the hospital like so many families do. I fear someday I may just have to experience that to. For now I am garateful all of Evan's colds are being managed at home. He is actually feeling better today and so am I. I just have to keep my eye on him. School is done till January again and I will try to keep this journal updated. Oh!! Evan is talking lots and making me laugh at his communication skills:)
TodayI was trying to find the music to "The gift of love." as in a hymn book. Couldn't track it donw. Thanks
TodayEvan is getting over his cold. It always takes so long for him to get over them. He usually has lots of secretions,coughing,mucus and choking but he is better. We had a fantastic Christmas. The majority of my family was here and we had a lot of fun. We danced, played lots of games ate too much and just plained had a great time. Evan really enjoys having a house full of people. His personality comes out even more once his shyness is gone. He was even trying to be funny and make us laugh. Evan is fun to be with. I tried to enjoy everybody this year I feel that we never know what tommorow will bring.
TodayWell it was a tough week. Evan got the runs and therefore I kept him off his formala. Since Evan is not used to any other foods I think the different food made him worse. WE then went to Flagstaff for his powerwheel chair. He got a lot of phlem biuld up and was choking on it and tried to throw it up but could not since throwing up takes so much work. Finally he did get it out and fell asleep when I took him out of the car seat. I hate taking him out of the car seat but having him sit so long builds so much mucus that I have to lay him down to calm him down and let his body rest a little. Having Evan choke then not be buckled makes me nervous when we drive but if I don't let him out of his car seat and lay him down is terrible for the mucus build up which could land us in the hospital. I hate travelling 3.5hrs to Flagstaff because Evan does so bad in the car. The way home was worse. Thank God my mom closed the salon to go with us. Her and dad were a great help although I was very snappy and mean since Evan had me so nervous. I am so glad to be home!!! Evan was still sick from the travel but is now much better. His diareah is going away and so he is back on his formula. I fear he must have lost some weight and I hope we gains it back soon. He has been 29lbs for a few months now and he needs to gain. Evan doesn't like his powerwheelchair. He drives it backwards or goes around in circles. he crashed against the wall and pinned his arm on it and now he does not want anything to do with it. I wish he understood how much better it is to have independence. Oh well. It's going to take time. I beleive it's a blessing from God to have it for Evan. School starts on the 22nd for me and I'm not sure when Garth starts teaching. I am excited for the both of us. Evan is doing well and therefore I feel good again.
TodayHope you checked out Evan's new pictures and update. I think It's mommy's more of an update than Evan's. Lorraine, I didn't write that about the music. I don't know who did on Evan's Journal.WEIRD?! Evan is back to normal thank God. He is so much fun to be with when he is healthy. He loves to watch me cook. I sit him on his tumble seat on top of the counter(yes, I know...but I'm right there)and I let him taste and smell and sometimes put his hands in the food. It's a nice bonding time for us. I looove to kiss Evan's cheeks they're soo soft. Garth and I laugh because everyday when we put Evan down for the night he bawls!!He cries with big tears and gets red and hates going to bed but he's usually out within 15minutes or less. We let him watch t.v. and sit on daddy's lap while doing so and those are his two favorite things. Daddy and t.v..He is a lucky little boy to be surrounded by so much love.
TodayWhooops I better make something clear. When Evan sits on the counter in his tumble seat to watch me cook He is NO Where near the stove!!:)
TodayGarth had a great idea. WE took Evan up on a Ferris wheel!! He loved it.Garth and I had our eyes opened by the Lord a long time ago before Evan was born we used to tell each other " let's make a memory" when we tired something new or just enjoyed each others company.Well yesterday Jan 18,2003 Garth said lets take Evan on the Ferris wheel that is in town. I had heard that a mom took her little boy of 2.5yrs on it in playgroup and I had mentioned it to Garth. I guess Garth remebered and we decided to take Evan. I was little concerned they would not let Evan on, but they were really slow and they did. We sandwiched Evan in the middle of the two of us and he sat there with the suppport of our bodies and off we went. I was terrified at first but I tried not to let it show since Evan did not know how to react at first so I did not want him to get my chichen vibes. As the wheel went around once I relaxed and the more around we went the better I felt. Then we showed Evan all the cool sights from the "sky" and he really thought it was neat. HE wasn't scared at all. Today we drove by it on our way home from church and he saw it and wanted to go on it again but it costs $8.00!! for Garth and I .So we thought once was good enough. I took a picture of the ferris wheel and daddy in front of it but GArth and I took a picture of the experience with our hearts :)
TodayToday is the last day of freedom till the semester is over. I start school tomorrow. I am excited. Garth doesn't start teaching till Monday next week the 28th of Jan. Evan is doing really good again. In fact I just of thought of it. Evan hasn't used the cough machine and suction machine in a few days!!:) Makes life so much easier for all of us. Garth and I went out on Friday nite he almost had to dragg me out. I wanted to stay home like usual. I feel so guilty leaving Evan but I know it's good for Garth and I to go out. I don't mind leaving Evan with GArth but leaving Evan with anybody else is hard for me. Well like I said we went out and had a great time. We went to Laughlin to a sports bar where they had a great special 64oz. of beer( I don't care for beer) and a cheese pizza for $3.99!! I'll drink some beer for that price!! We ended up waiting in line for a seat but we really enjoyed each others company. I'm glad we went. Evan is at the stage were he tells my mom and dad and sometimes both Garth and I "no touching" (which could mean anything that is his or ours)or "no talking" when he wants to be the center of attention or wants to listen to his music. I get a laugh out of it although sometimes I must remind him that he has to "be nice". GArth sometimes has to tell him that too in a more threatening tone of voice. EVan only does it to those whom h feels really comfortable with it's his way of being two!!
TodayScarlett/Garth: Your prayer partners from the First Ch of Faith Hope and Love in Edmonton remind you; we have you and Evan on the list for the prayer chain made up every week. I'm just doing it again today for the week ahead. Thank God, He cares!! In Christ...Pastor Ron/Joyce Allen
TodayIt's been a while since I updated but thank God no news is good news. Evan has been doing great so far. It's been a while since he has been sick and life healthy is much easier to handle. I've been in school and doing well in it.Even though it's alot of work and stress i have to admit i enjoy it. My dad looks after Evan for us on Tuesdays and he enjoys it since when he comes at 3:00pm Evan is still taking a nap and he takes advantage of it and takes one himself too. I must brag that I made honors in school and this Thursday the 28th I will be part of an invocation into Phi Theta Kappa (an honors program that is recognized worldwide for two year colleges)! :)I'm very happy about that. Garth is doing well to they asked him to teach next semester again and he said yes. Remember when I struggled going to play group since it was so hard to fit in and I felt so depressed afterwards? Well I am happy to say that a couple of moms have been over to my house and Evan and I will go over to there houses for visits. It's really nice. I must confess I still battle great sadness when Evan just watches other kids play and he is so limited to what he can do, but we still go and try to participate as much as possible. The kids usually take the toys away from Evan and Evan can not fight back or sometimes they will throw things and hit Evan and Evan can defend himself that's scary and hard for me but perhaps the more he is around kids the tougher he will become and figure out how to fight back. I greatly struggle with depression and bitterness over this but I enjoy the new friendships we are developing.Garth and I are still doing well we are just really busy with school on top of daily chores Monday thru Thursday we hardly see each other and life is almost back to normal Friday thru Sunday. LIFE IS STILL GOOD.
TodayEvan is still doing well. He is attempting his wheelchair (powered) a little bit more now. He goes around in circles and backwards and then quits when he can't control it. A little at a time I guess. Nothing new to share we are doing well and that's a lot to be grateful for.
TodayOne of the scariest moments of my life happened. It all began with a bad bad cough. Evan coughed 24 hrs a day and we did the cough machine every 10 mins and that did not seem to help. We gave him triaminic and that seemed to help but not much that went on for two days. On the third day Evan was exhausted of trying to cough all day and his coughing quit but he began working really hard at every breath of air he took.I wish I had called the doctor that Friday but I thought Evan would get better. Saturday Evan was not better and he was using his whole body to breathe. I called the doctor and he was out of town till Monday. So I talked to his substitute and he send him antibiotics without seeing Evan.I thought about taking him to the hospital but they would only send us to Phoenix and there's not much they could do for Evan anyway.So we gave Evan his antibiotics and prayed and did not sleep since Evan could not sleep.Finally Monday came and I phoned the doctor at 7:00am hoping he would have his beeper on Praise God he did and returned my call. I told him there was no way I could take Evan to his office since Evan was so weak and on bipap 24hrs (machine to help him breath)Evan was now on oxygen too.So thank God he came an hour later and was shocked to see Evan in such bad shape. I knew Evan was in trouble and he confirmed that fact. He gave us two options; 1)fly him to phoenix and have them intubate him 2) get morphine and wait.... I phoned Garth right away and he came home from work. We decided to send Evan to Phoenix but the doctor then mentioned that Evan might not make it all the way anyway. Evan's legs were really hurting and all he wanted to do was sleep and he was not alert anymore and was starting to not breath so fast which the doctor thought it meant his body was beginning to shut down. He said he was dying... I could not believe it I cried to much and was so scared I threw up twice Garth and I laid down next to Evan and kissed him and held his hand and prayed for God's will to be done. We had given Evan a new nebulizer treatment called mucamist and Evan seemed to be slightly improving and improving to where he was coherent again so although we had the morphine we did not need it. TO GOD BE THE GLORY!! God delivered Evan to us and although he was on bipap 24hrs for the following two days he is getting better slowly. Evan is finally only using the bipap for naps and sleep but some days he needs it during wake hours too.If it was up to Evan he would be on it 24hrs a day still. He prefers it on since he remembers how it helped him. Evan since has lost a lot of weight and his face is bruised because of the bipap. He is not well yet but about 60% better. He still needs a lot of chest therapies and he has been home bound for almost a week. He is extremely floppy where he can not hold his head up but Garth and I feel like we have a second chance. We love Evan.
TodayEvan is back to normal again. He is not as strong as he was but is almost there. We have been going to play group and out of the house. I couldn't wait to be out and about again with Evan.I feel blessed to have experienced such an intervention from God as he delivered Evan to Garth and I. I did learn alot from that experience though, I learned that life is fragile, Memories is what counts, only a few really care (usually family), and life goes on. The world doesn't stop or cry for anyone.that's just the way it is. Evan is off bipap only at night or naps. His face is finally clear of bruising from the mask and he is putting weight on again. He is being demanding and bossy and fighting with his therapists and that means he is well.
TodayWhen Evan was diagnosed they gave him 2.5 yrs to live and that means right about now. Well those words are with me all the time and unfortunatlely we have seen those words try to become real. Evan got really sick again. In less than a month Evan got deathly sick again. On Wednesday he was having a good day we were out and about and around 11:00pm after Evan had been sleeping for some hours he woke up coughing and coughing and coughing. We tried the cough machines and suctioning and nothing stopped the coughing. I knew this was the start of a bad thing. The next morning Evan was sick and was breathing hard and exhausted and scared and so were we. We tried medicinenes and all the tricks we now and nothing helped. Finally the doctor ordered chest x rays and sputum samples and drew blood from Evan (Evan was so tired and sick that he did not cry when they drew blood).He had pnemonia. Not a good thing. He had the bad type of pnemonia that required antibiotic shots and if that did not help I.V. was next.Thank God the shots are working . The nurse comes every morning and gives him a shot on the thigh. He cries every morning until the nurse gets here and gives him the shot and it's over with. The anticipation of the pain is worse than the actual shot. It's really really hard to see Evan sick. WE did not sleep for four days and I felt like a zombie. I got a clod from Evan and that was twice as hard but AFter a week I finally was able to nap with Evan since he was feeling better and my cold got better although to this day it's still there. IN moments were Evan is sick,I hate God, I hate Sma and I wish I could die with Evan. I now pray for merci. I pray that God will completely heal Evan or Take him to His glory. It's so emotionally tiring, physically and spiritually too. I struggle for peace but I don't think I will ever smile from my heart until I see Evan be free from this evil diesase. Sometimes i begg God to take Evan because i love him so much and it hurts sooo bad to see him struggle and be soo sick. I can't be happy with living with sma and I can't be happy with living with out Evan. I am glad to have him today and all the days that I do have him, but I want Evan to not suffer and I don't want to suffer either. GArth and I signed a Do NOt recusitate and Do not intubate letter for Evan if he ever gets that bad which I fear may happen but hope it doesn't. I am in hell with sma but I adore my sweet boy.
TodayFinally able to update. Sorry it took sooo long. I moved the computer to a different room in our house and did not set it up for a while but finally here we are. I have also been extremely busy. I am finally done with school for the summer and I am enjoying the break.
TodayEvan is doing great again. Although the Arizona summers are hot they are great for killing germs. Evan usually does well in the summer and that gives us peace and allows us to breath and enjoy life and see the beauty and Merci of a Heavenly Father and a Loving God. Isn't it interesting how I love God when things are going smooth and hate him when things are not? I know there is a God I have heard him speak in my head and I feel his hand on me when I want to let go and give up. Unfortunately, I have yelled and cursed and hated God and let HIM know it and I have also loved Him and I will always need him.
TodayEvan got to see his cousins from Canada. He sure enjoyed them greatly. I was very impressed at how good and gentle and attentive they were towards Evan. They brought a lot of laughter, entertainment, and youth to Evan's life even if it was for moment. When they were leaving and driving off the drive way Evan said all out of his own and from the heart, " I miss Auntie Heather and the boys" Thankyou Heather, Bobby, Wyatt and AJ for visisting Evan.
TodayEvan sure enjoyed grandma Lorraines visit. She is so energetic she threw herself on the floor next to Evan and made him laugh. Evan can be picky about people he likes but he took to grandma really well and quickly. I was nervous that he would really miss her after enjoying her fun loving personality for about three weeks, but we had a busy weekend and didn't really ask too much about her. We do miss you though Grandma!! Grandpa Red is also missed.Evan seldomed asked questions about him after we told him that Grandpa Red was with Jesus he was fine with that answer and did not really need any further explanations.I am grateful for that.I am grateful too that I believe in Jesus Christ as my personal savior I know without a shadow of a doubt that God is real and I live with peace in my soul that the day I die I will see The Creator. Although when Evan suffers I resent God and perphaps Hate Him too I stil believe in HIm and my comfort is that I believe God knows what is best for Evan.May Red rest in peace.
TodayWell Evan got a puppy thanks to auntie Marlen. She got him a toy poodle. he is black and white and is very cute. he is male and is named ruffy. Actually my extremely smart little almost three year old thought we shoud name the dog "ruffleologous" can you believe that name? how many almost three year olds would come up with a name like that? Okay, how many almost three year olds can pronouce ruffleologous? I am so happy that my son is so smart. He is still a little boy and loves to play and all that but his mind sometimes blows me away. I have to brag you know;)
TodayEvan is doing really well Thank God. I don't know how exactly but we keep so busy which is great. I think that also helps Evan be distracted and healthy. Today Evan and I colored and cut, gluded and played a little bit. I must remind myself to make time for things that Evan wants to do not just things that I must do of things that I should do like cleaning the house which for some reason I feel it's never clean enough and excercise which I feel depressed about since I've gained weight and my clothes are fitting tight. Enough about me, Evan is presently taking a nap which he doesn't take often anymore. I sensed that he needed one today and so I put him down to sleep and he was out like light. Let's see what else about Evan. He doesn't like to take baths.He actually doesn't want to hear the word water. Mom's swimming pool is ready to a dip and Evan cries and says "no".I think he'll like it once he's in it. Well I better go.
TodayEvan is still doing well. He has been feeling a little warm but no fever and has had a little of diarreha.Mom gave him some medicine and his diarreha is gone. I've tried to put him down for naps so his body can rest and have strength to resist whatever is trying to invade, Thank God no sickness so far.Yesterday, Garth put him to sleep for a nap and Evan talked and talked to himself for an hour or more and he did not sleep so we had to get him up and therefore he did not nap!! We had some friends over yesterday and Evan took over the conversation and was very excited in showing off his roon his big bob the builder and his buzz light year.It was cute. I imagined that if Evan was able to walk he would be running to his room all excited and showing visitors his room and his toys.Although his body can't express his emotions his face does and so does his speech and tone of voice. Very cute!!:)
TodayI saw the Hand of God with Evan today. Evan was riding his powerwheel chair today and he has trouble turning it to the left since he needs to use his thumb only to turn it and he doesn't have the strength. Anyway, he crashed against our wedding portrait which was sitting on an easel in our computer room.I was in the garage doing laundry and I heard a loud crash I ran and saw Evan covered in broken glass.He was crying. Evan's face and hair was covered with sliver-like glass.There were big razor chunks of glass all over him and surrounding his wheelchair. My heart jumped and I slowly and carefully removed the glass off of him and checked for blood. There seemed to be a big piece sticking out of his arm, so I gently took a good look at it and saw that it was only on top of his arm not in it. The Lord protected Evan. From all the potential great harm Evan only had a cut on his knee and that was it!! I wiped off his face and body and watchfully washed his hair to removed the glass dust from it. After I knew Evan was well I got on my knees and thanked the Lord. Wow!
TodayI wish i could keep this journal updated more frequently but I get distracted with other issues. Evan is doing well. When I don't write any news that's usually a good sign. Evan is getting really fat and he looks so good. I LOOOOve to kiss his chubby cheeks. Sometimes when I have not been around him, I think while I drive home of how great it feels to sink my lips on his baby soft fat cheeks and how fantastic it feels to hold his body on my arms and embrace him with love. My arms and lips long for him when I haven't seen him in a few hours.Although if I come home late I do long to hold Evan and kiss him but also I hope he is asleep so that I can just relax in the evening. We are getting ready for his birthday party. We are having it on SAT Aug 23 at 1:00pm at my mom's house.I don't like giving parties it's a lot of work and I don't like being center of attention(I know I won't be EVAN will but still I have to host). But gotta do what you gotta do. I've been depressed lately I have noticed how harder it's going to be as EVan gets older. Kids are starting to make friends and got to each ohters houses now and really enjoy having freinds and since he can not play well due to his weakness then he can not participate and kids at this age like to run and chase each ohter and be chased and jump and be very physical and of course Evan can't so we don't have to many friends but I'll work on it and the rest is out of my hands. I really don't want Evan to hurt emotionally.God have merci.
TodayI know it's been a long time since I updated but our computer is in the garbage and believe me I hardly have any spare time to be in the computer updating Evan site. When I do have spare time I hit the books.To use a computer I have to go to the library. Evan is doing great. He is now three, he had a great big party over 40 people attended. We had it at my mom's house and it was a huge success. People said it was a great party even weeks after the party. It's nice to know how many people care for Evan.Garth is busy at work and teaches a biology lab on Thursdays. MY sister Marlen is living with us and is a tremendous help. IF it wasn't for her Garth would not be able to teach on Thursdays and Garth and I would never get to go out together without Evan on dates.Respite providers quit often and are seldom able to help. Nurses are not even imaginable to come and look after Evan if needed. So Thank God for Marlen and my mom and dad. Evan started preschool.The kids accepted him pretty well and just leave him alone some few kids really like him and want to sit next to him. HE doesn't really love it,he just endures it. IF the teacher was fun I think he would like school. That's my concern the teacher is burnt out and is not fun, positive, entertaining or patient. No real problems with Evan but it does affect the atmosphere negatively. WEll I gotta go to class ( I skipped one class in order to write this). I'll try to update more often.
TodayEvan has been bringing alot of germs from school. He has had 2 colds in two months. I end up sick too and so does Garth, Marlen and even Abuelita and Abulito. It's kinda scarry, the good thing is that he is getting over them pretty well. Other than that he is doing well. Growing, making me laugh and enjoying his company. We are hoping to take him to Disneyland this year.I think he is old enough to enjoy it now. Garth is doing well. Work is really busy for him.
TodayEvan enjoys preschool most of the time but unfortunetly, he gets sick when he goes. He just missed 2 weeks due to a cold. He just started again and went for 2 days this week and today he woke up with a runny nose and feeling under the weather. this really sucks. Garth and I are in disagreement over sending Evan to school. I believe I should pull Evan out of school until the flu season is over and then have him go again. The teacher and the therapists will come to the house. Garth believes that Evan should go to school for the social aspect. I agree Evan should go for the social part but this is a high price to pay because Evan keeps getting sick and Evan is the one that suffers. When Evan is sick he is sick he doesn't have energy, he is floppier, he loses weight, we don't go out of the house, he doesn't sleep well and i get scared and nervous and therefore grumpy,impatient and eat alot and it's just plain hard on everyone but specially Evan. So, I'm not sure what to do. I wish God would just heal Evan.
TodayToday I have seen the hand of the Lord. NO healing for Evan yet, but never the less a miracle. We needed a van to transport Evan's powerwheel chair. I looked and called and inquired somewhat deeply to find a handicap van and the cheapest I found was almost $15,000!Garth said too expensive and so we waited and prayed for one. I was getting a little impatient because the powerwheelcahir is Evan's independence and I want him to have the joy of being able to go as he pleases. Anyway, I asked my brother in law Julio to please keep and eye out for a van. Well, yesterday he called and said that he stopped at a disability dealers place and asked if they had any used ones for sale. They said no, but that a lady was in the process of buying a new one and that she was going to sell her old one. So they contacted each other and meet today.Originally the lady was going to sell the van for maybe $6,000 which is great but after Julio talked to her and told her about Evan the priced dropped and dropped and dropped until we purchased the van for $3,500!!!!!! Isn't that incredible. That's God working. I am so happy. Ofcourse the van is older a '96 mileage is 45,000 and is really big a Ford E150 but it'll take us from point A to point B and carry Evan's wheelchair so we are happy. Julio will drive it for us when he moves here which he said will be in 10 days!!!:) It'll be good for Evan to have Julio here too. Evan is well, still rattly from the chest and lots of cough machine but not sick not 100% but not sick. Praise God
TodayEvan is doing well. He still needs cough machine every day but we are able to go out and evjoy life. He hasn't been in school for a long time and I don't plan on sending him back till the after our trip. We are planning on going to Disneyland on the first week of Dec. so I hope he stays healthy.Also Julio is coming on the 30th of Nov. and I hope we can drive the van to California. I can't wait to see it.I hope it's more than I anticipate it to be. We took Evan to see the Army music band at the Ramada yesterday then there was also a Bluegrass band playing and we enjoyed ourselves. Auntie Marlen went with us. She is such a great auntie always watching out for Evan and being as helpful and thoughtful as she can be.
TodayWe are finally back on internet at home. Hopefully that will mean more updates. Evan is really sick, possible pneumonia. He was really bad two days ago and we got about 3 hours of sleep in 4 days. We were all exhausted. Thank God with a lot of work and prayer Evan is starting to do better. He is on bipap 24/7 right now and panics when I take it off to transfer him from room to room. I feel he'll get better slowly but surely. it's very physically and emotionally stressful I'm glad Evan will be in my life for a while longer.
TodayEvan is getting better slowly but better. I am more desperate for him to get better than he is. I tried sitting him up for a while and he handled it well for only 5 mins. Then he needed to lay down. I took the bipap off for 1/2hr and he couldn't wait for me to put it back on. I just hate seeing him so dependent on it and I'm desperate to get him out of the house. He's been home bound for a week and although I get out for short whiles I wish Evan could go outside for some fresh air. He has lost weight and he looks very skinny. His face is bruised from the mask and today he really complained about a sensitive gtube and his teeth hurting. Ahhhh I can't wait till he's better. HE's whinny and cries easily and although it's a lot of work I love him and long for Evan to be back to normal.
TodayPraise God Evan is doing better.We took him off of bipap for 10-15 mins and fight hard to distract him because he cries for it back on. He managed and Garth slowly increased the time off bipap. By this evening Evan did rather well off bipap for about 1/2hr. He's starting to be back to himself again and that is such a relief for Garth and I. My dad watched over Evan today while Garth and I went out for supper. It was nice to go out and enjoy each others company. Tomorrow is our 7 year anniversary and I am a blessed women to have such a great husband. Garth is such a great help with Evan and so resposible as a provider, and considerate of me, he keeps me in love with him. Evan has been sleeping rather well only getting up about 6 times at night which is a great thing because he was waking up every fifteen minutes due to pain in his belly and ribs from working so hard at breathing. Well I see health again for Evan at the end of a long tunnel, but it's there and step by step we'll reach it.
TodayEvan is almost 85% himself again. He does have the markings of the battle for his life that he just endured. He lost a lot of weight and his nose is raw from the bipap machine. It doesn't hurt though and that is a relief. He tires out easily and is very whinny but eventually he will be back to his self. He is a joy to be with never the less. We have gone out to pizza hut and the library and ofcourse Abuelito and Abuelita's house where they spoil him rotten and Evan loves it. Garth got a bit of what Evan had but after two days of going to bed at 6:00pm he is doing well again. Thank God HE makes mommies strong because we can't afford to be sick ;-)
TodayEvan is still doing well. He is getting back to normal everyday. Today we took him to Walmart which is the only real store here. It's a big deal since it's so big and filled with people and germs. We took him because we could and that represent normality to us, going grocery shopping is normality. We had a great family day today. Since a big sense of relief is among us now, Garth and I laugh a lot and appreciate life. Unfortunately we take life for granted as soon as everything is back to normal is it's starting to get there thank God. I'll try to email the disney pictures to Laura so she can put them on this website. bye,
TodayThank God Evan is back to normal. We have so much fun when he is back to himself. I really appreciate the little things in life when we can go out to restaurants or go shopping even to the grocery store. We can go to church,go to the gym, and playgroup and just plain be able to breath fresh air and live outside our walls. What a relief. When Evan was so sick that we got up every ten minutes at night we had no sleep; now getting up only 3-4 times at night seems soooo restful.When Evan gets sick the hardest thing for me physically is the lack of sleep.That was so incredibly hard. It deepletes you of all the energy and physical and emotional rest that is tremendously desired. It's not the fact that you can't sleep due to stress it's the fact that you can not let your self sleep due to the fact that your son needs you and you are the only one that can help him. Believe me I now relalize how easily one could become an addict to drugs or booze. Thank God I am not and have not experimented with that stuff but I can understand how desperate a situation may be and how one would use any means of escape and breath in a different world for the great need of a break. Thank God all that is behind me know and we are all sleeping well again. Thank you God.
TodayEvan is doing great. He is starting to gain weight again and is back to his usual self. We go out and about again like before. What a great blessing that is.On a sad note, Marlen moved back to Miami. She was a tremendous help with Evan for us.She understood the need to babysit Evan for us so that Garth and I could go out with each other and take care of our relantionship. I miss her alot!!
TodayEvan is doing well. We have grandma Lorraine visiting us and Evan and her sure have a good time together. She plays with him and makes him laugh. Evan has had a chance to go to friends house for playdates every once in a while and he sure enjoys it,although he is so used to being with adults that he prefers them to people his own age. I beleive that God allows children like Evan in this world to test us. This test is not only for Garth,myself and our immediate family, but for everyone.It tests our hearts and shows us the true selfishness or the tenderheart we have. Most people have been proven to be tenderhearted.
TodayEvan sure enjoyed his time with grandma Lorraine they are both good talking partners and enjoyed each others company. Time with grandma Lorraine went by fast.She did and excellent job at keeping him entertained and gave him lots of attention which he just loved. Unfortunately Evna is sick again. Possible pneumonia again. It seems that he is getting sick more often. It is very scarry when Evan is sick I always wonder if this is it. I also have even asked God to have Merci of the us and to take my precoius child to be in His Glory and free from this evil disease and sickness. It is so hard to watch my boy breath hard at every breath. His ribs and diaphram hurt from working hard for days without a break. It's almost like doing cardio nonstop at high intensiy level for all day and night and if you stop you die. I have pleaded with God for Merci. Please God take him or cure him, I hate the inbetween where we are at. Garth and I choose not to take Evan to the hospital, we have every thing we need at home and if Evan needs more then we will have to face the biggest fear and horror that we will ever face. Thank God Evan is getting better. Somedays he seems better somedays he can't stand to have the bipap off for even 5 mins or his lips start turning blue. I know people ask themselves why not just let him go. I can't just sit there and watch my son fight for his life and not help. I can't watch my soon choke on his mucus filled lungs and not try to make it better. If we stopped using the bipap and the cough machine and the g tube and oxygen then yes Evan will die. But as a mother I can't kill him. If I have the resources to help I will when and if the time comes when my recourses can't do any more then that's how far I will go. I hope that time does not come. I pray fervently to God that He will have merci of us and take Evan someday in his sleep without suffering of to keep him on this earth as a normal bodied little child. Ofcourse what I pray for the most is a miracle. I wish God would grant me that wish. I don't know what I did to deserve such a life. It's so hard I dont' wish this on my worst enemy. But as long as my son is in this boat without a lifejacket I too and staying aboard. Garth and I have been fighting a lot. When Evan is sick we are both emotionally drained, physically and spiritually. I can see how divorce in special needs family is so high. The neat thing is that when Evan has a better day the immense relief and joy that surronds us is so powerful and beautiful. I hear Garth singing and whistleing and carry a smile of hope. Pray for us pray for the things I pray for pray for merci. Sometimes I think I am going to end up in a mental hospital. Sometimes I want to give up so bad. I wish God would take my life too. Don't worry about what you just read. I am expressing my true emotions and they are not always what you want to hear but they are real. God Bless Evan.
TodayWell we are having a good day. Evan is still on bipap but his energy level is much better. We had lots of his friends drop by and lend us movies and visit that was really nice.Evan and I enjoyed it a lot.It makes life an easier place to live when you know you have friend who care. Another positive note is that Garth and I are back to our normal selves again. We get along well and enjoy each others company. Evan slept really well last night...AHHH felt so good to sleep!!:)
TodayEvan is doing better thank God. He had the bipap off almost all day today. At first he really wanted it on and I had to distract him so he would not be thinking about the bipap finally he realized he could be without it. His face is bruised and tender and open from the mask but I can tell his cheeks will heal quickly.I think if he continues this way he might be able to go out briefly in a couple of days. I don't want to push it, but I'm desperate for Evan to join the outside world again. It's been almost two weeks since he's been homebound.
TodayEvan is doing great. He is putting weight back on and is looking better. I am taking him to the gym with me and he enjoys going there. He mainly watches t.v. there but he likes being there anyway. I also took Evan to see Clifford the big red dog with the playgroup gang and that was nice to be part of a group again. Usually the children leave Evan alone when there are other able bodied children to run and play with, when their mommies bring them to my house or we go to theirs and its one on one then they give Evan their attention. I hate to admit, but Evan is too much work for his friends and after awhile of having to play for Evan and pick toys and give him different ones and try to entertain Evan then the kids just give up because they have to do all the work. Even adults get tired after awhile so I understand the children not enjoying Evan's play dates as much as another child that can participate and play back and not be so demanding of them. It hurts for Evan to be left out, but although I try as hard as I can to make friends for him I can only do so much. I can not make the kids enjoy him. I know they like him, but I also know he is not their first choice when it comes to a playmate. I hate to confess that my child is different and is not like the rest of the children. I wish so bad he was. I don't let myself think too much of the " I wonder what Evan would be like if he was normal", I try not to wonder this way because there is no point in it, but the temptation to daydream and depress me haunts me. I adore Evan and I will accept him anyway he is. I have already proven that. I'd rather have Evan this way in my life that have no Evan at all. I also have come up with a conclusion that no one will suffer or carry the grief of Evan if he dies like I will so that I don;t give a damn what anyone thinks of us because when it's all said and done it's us not anyone else that lives this life.
TodayMonday the 17th of May was a sad day, our puppy ruffy got ran over by a car. The RV gate was left opened and he got out was on his way back when he got hit. I did not see it and neither did Evan. Lorraine's friend Bernie saw it and informed us of the sad news. Ruffy died instantly. Evan was heartbroken at the news and really cried over his beloved puppy. Evan wanted to see Ruffy so showed him and he cried. I thought it would be best to be honest. I tried to distract Evan by reading him some books and promised him a boat ride. That cheered him up and soon got over the tragedy. As the day went on Evan was fine again. He enjoyed the boat ride. We do miss Ruffy. It feels weird how we don't have to worry about leaving the door open anymore or see Ruffy greet us at the door when we came in. We do miss him alot,but Evan is doing great and has not cried since the initial news. The scary thing is that death is so permanent. I think there is something to learn from this although I don't quite know what that is yet. I want to appreciate Evan everyday. Death is so permanent that is the painful part of it.
TodayMake a wish was here yesterday evening. We tried to make it a surprise for Evan, but he is too smart. We kept him in our room while they inflated ballons and got the house ready for his wish party. Evan kept hearing the noise of the helium tank and kept asking us what that sound was so finally we had to take him out and show him he was surprised!! There were 35 red ballons all over the dinning room and it looked very festive. Evan got a widescreen laptop, with an adaptable mouse and adaptapable keyboard,digital camera, seven software programs, height adjustable and tilting table, and a scanner,fax, printer,and copier all in one unit!! WOW!! Evan really likes it. Garth and I will have a lot of reading to do. Make a wish brought a guy to install all of this for Evan and get it going. The mouse did not work properly so they took it back and will see what is going on with that and exchange it for something different if they have to. Make a wish also brought cake, pizza, soda, ice, plates, forks, knives, cups everything they could think of to make Evan's day special and it truly was. There was even a guitarist that played for us as we sang songs and brought joy to our hearts. Although all of this is fantastic, we would rather not be in this boat, but organizations like this makes us smile and the computer will keep Evan occuopied for many hours in his life. I will now be able to send and post pictures for all of you to see and share with us.
TodayWe had a fun day yesterday at the last Mommy and me group meeting until the fall. We went swimming at Los Lagos which is one or if not the richest section of Bullheadcity. The clubhouse and pool were beautiful. Evan had a great time and then there were snacks. Evan then invited himself over to a freinds house. That was cute. So we went and had a nice time there too. Garth and I went to the movies and my mom watched Evan for us. I have never seen such an unselfish mother like my mom. I need to start looking for someone to watch Evan for us besides Norma the nurse. She only comes on Saturdays if she can. Once mom leaves we are going to be really stuck.
TodayYesterday was a very scary day. Evan did not sleep well at night and I feel there is something harboring around inside him so I am on alert and trying to take it easier with him (more T.V). He woke up early 7:00am and so I suctioned him and did the cough machine after his nose started bleeding. No great concern he has had nose bleeds before. So I stuck vaseline up his tender nose and he kept bleeding. Then he started bleeding from the mouth as well. So I suctioned him so that he would not swallow the blood. More and more blood came out, faster and faster and more and more from his nose and his mouth. I kept suctioning. Evan was crying and panicking. He was choking a little bit. I started getting really nervous. My mom got up and got wet cloth and we put it on Evan neck on the back. I tried pinching his nose but Evan didn't like that. Then blood was goushing out of his mouth. His mouth was filled with blood and I couldn't keep up with it. I was almost ready to call 911. my mom starting crying, Evan was bleeding profusly and my knees were shaking. The room was starting to get dark to me and my blood pressure plumped down. I turned green and was ready to faint. I left Evan at a terrible state and laid down.As soon as I laid down I felt better. I said to my mom call Garth. She was so nervous that she couldn't dial. I could still her Evan struggling so my mom went to help him. I got up after about 30 secounds and suctioned Evan again. He was still bleeding profusly and I couldn't take it any more I had to lay down again. I call Evan's doctor but there was no answer so I paiged him. Mom went to help Evan and she elevated him and then the bleeding stopped. She yelled at me to tell me it stopped. What a relief. Mom cleaned Evan of (half of his face was covered in blood) she changed Evan for me and removed the bloody sheets from his bed. I got up and suctioned Evan some more. He was not crying anymore and he seemed better. Evan lost about 4 ounces of blood. I called Garth and told him that it was under control not to come home any more. I too felt better. Ten minutes later Evan was singing and being his usually happy self again. I could not leave Evan's site that morning. I keept my eye on him all morning. Thank God my mom was here to help!! I said to her " I don't think I'll be a good nurse mom, I almost fainted" we bothed laughed and she reasurred me it's different when it's your own flesh and blood. I hope this does not happen again. I was very bad and very scary. Thank God Evan is fine, I just hope none of the blood went into his lungs. He is rattly, but I'll just keep my eye in him. Gosh, it's not easy.
TodayEvan is doing okay. He is very rattly on the chest. Coughing quite a bit. I hope this goes away soon. I need a long healthy period, I need a break. I wish i could go on vacation by myself for a week or so. I think I would probably not want to come back. I loooove Evan and Garth, it's just so much work and constant. I know I'm not the only mother who feels this way every once in a while, perphaps I'm one of the few that voices this truth. I won't go anywhere though don't worry. my love for Evan and Garth is greater than my own fatigue. I will never leave Evan.
TodayWe went to Anaheim to the disabilities Expo and it was a disappointment. It was small and nothing there that I was looking for. I wanted some hands on adaptable technology for Evan and there were none. Evan got to see a lot of wheelchairs and felt prettty good about all the attention he got so we did enjoy it. We also meet another Sma family and that was really nice too. We left around 2;30 back to the hotel which was walking distance. Evan really enjoys staying at hotels. We then took Evan to Disneyland and ofcourse Evan loved that. He enjoyed it more the first time, but he still enjoyed this time too. It was nice to get away and have a mini vacation.
TodayEvan is doing really well. I enjoy his company so much and adore him so much. I love going out with him and our conversations which usually involve Evan asking tons of questions and me answering them. Evan's usual questions are" how come" why" what happened "why"what" what did he/she say" and if I'm having a conversation with someone else Evan wants to know everything going on and asks questions. it's usually amusing, but sometimes I have to tell him to be quiet for a while. I am sure glad he speaks. He is having a little hard time with swallowing his saliva which makes it harder for strangers to understand him sometimes. I usually understand him always. I would say Evan speaks at an 80% understandable for strangers and family. His level of grammar is at a level of a six year old. Evan hardly ever asks "why" he asks "how come" he uses "well" and"sure", "I suppose so", "I don't think so" and grown up language.
TodayEvan is doing well. He only weighs 28lbs which is really skinny for an almost four year old. I don't think he looks really skinny. I think he looks scrany but not unhealthy. Evan back is really curved and seems to be starting to go sideways. He is getting harder to understand since he is having problems swallowing his saliva. He is getting more handicapped. You don't know how hard it is for me to admit this. I hate admiting that I am losing the fight of my dream of a miracle. I see this disease destroying my hopes. I really hate the fact that Evan can not swallow his saliva. It makes him look even more handicapped. His intelligence is his strength and if noone can understand what he is saying they will never realize how bright he actually is. I have not thought about Evan not living to be a grown man. That possibility has not entered my mind for a long time, perphaps it's because he has been healthy. People tell me that I am a strong woman. Perphaps I am. I don't know if I see that as a compliment.I don't want to be an exception, I don't want to be different, I don't want to be extraordinary, I want to be that same as all others, I want to be a mother of a boy named Evan. I do want others to admire and compliment and notice all the work I do. I do not want others to think litely of living with sma. I don't know what I want. I think I want to be admired but not made feel like I have it sooo bad,like I am the only one with this life, I don't want to be pittied or made feel belittled. I read somewhere where it was Rosa Parkers ( I think), she said" If you want to be my friend there's two things you need to do 1) forget that I am African American and 2) never forget that I am African American. That's how I feel I am just like all other mothers, but I am not.
TodayEvan and I had a fantastic time in Florida. My mom is in the process of buying a salon therefore she had time to spend with us, Marlen also had time off from work and spent a lot of time with us. We took Evan to the Evergladeds and saw snakes which Evan touched and alligators. We went on an airboat ride and Evan really enjoyed that. We went shopping, ate out lots, went to the beach, took Evan to the Miami seaquarium which he enjoyed trmendously and had a great time. I had no need to go to the Everglades or the seaquarium and it would be easy to just take Evan whereever I felt like going but I didn't. I made sure Evan had a vacation too. It was one of the best vacations ever. I adore my family. They adore Evan and I and let us know it. Mariam was able to come too, so it was a dream come true to have all my beloved family together. Just wish Garth was able to go.
TodayI should also mention that traveling with Evan is not easy as you can imagine. I have to take all of his machines and formula and supplies which all wieght over 120 lbs. I also have to take his stoller/wheelchair and his car seat a backpack with more on hand formula, diapers,feeding supplies, kleenex,books and other entertainment tools. So I pushed Evan,carried the car seat and the backpack through the airport to the airplane (the 3 suitcases where checked in). The trip is 5 hours long. I praise the Lord he helped me in giving me an extra seat so that I could lay Evan down there is no way Evan can sit for even an hour straight. He pooped a couple of times in the airplane and changing a long boy in those tiny bathrooms is a challenge but if there's a will there's a way. Evan also threw up three or more times in the airplane so I had a big mess of kleenes all around me. It also take Evan two days to get rested from such a flight and ordeal. I think that once a year is good for flying. I felt the Lord's hand with us in the airplane flight. It could have been much more stressful if there wasn't room for Evan to lay down. On the way back the flight was over booked and therewhere people on standby and they told me there would be extra room i was really worried but Thank God my Lord the airport lady at the gate blocked off a seat for us and Evan and I were able to have the whole row to our selves. Praise the Lord!!
TodayI don't need any more scares but today i had one. Evan had not had a bowel movement in almost five days. I had been trying prune juice and I finally called the doctor and he said to use a suppository or an enema. So I got the suppository and used it on Evan. I knew he had been trying hard to poop but it was too hard and he couldn't so this morning I put another in and nothing. I was really concerned.Thankfully a nurse came in today and I told her about the situation and she said to get an enema and some ky jelly. So I did. Evan had impacted stool which is dangerous and means aggresive measures or surgery. So I had to use my finger(Glove and lots of jelly) and get it out piece by piece. Evan was crying and i was nervous but I was determined to get this thing out. With the supervision of the nurse we got a lot out. We where both surprised at how much and how hard it was. Evan was still crying and very nervous about the whole ordeal. He still can't tolerate a lot of food and is trying to poop on his own is not being succesfull. I got alot out I thought I got it all but perphaps there is still wome up too high. I just read on impacted stools and i am so glad i got it most out. I am nervous on how Evan will do on his own and I will continue prune juice. At this point I need Evan to have bowel movements even if they are too soft. I am sure Evan does not appreciate me sharing this but I want to rememeber this day because it was quite an ordeal and I am proud of myself and Evan.
TodayWEll Evan is back to normal with the pooping business. Thank God. Evan got a new puppy. It's a girl puppy, A shih tzu and we call her fluff. It's really neat how some people really open their hearts to Evan. A Lady named Theresa heard of Evan and of his last puppy that died and she decided to give Evan her beloved girl puppy that was only 9 weeks old. We really appreciate her generosity and we are enjoying Fluff. I just pray that Fluff will keep alert and stay away from Evan's powerwheelchair wheels. We've told him that he needs to be careful and watch out for fluff and he is, but he is also only 4 years old (almost) and so it makes me a little nervous, but I know it'll be alright and there is nooo way Evan would ever run Fluff over intentionally. We are enjoying our new addition to the family, know to train her to go outside!!:)
TodayA girl that is just a month older than Evan and had sma died yesterday. When I read that, it really hit me. I had just seen her pictures and she was long and wearing diapers and her legs looked just like Evan's. it really hit me. I cried and cried and cried. I felt so alone so desperate so scared that perhaps our turn was coming or just the fact that someone lost the fight to sma and sma took another victim again. I am very hurt about it still. I am very mad at God at him allowing Sma to be in this world when He has the power to remove it. I was so sad I just wanted to be alone. I did not want Evan or Garth around me I wanted out of my life I wanted to escape but where does one go? I fear for my sanity if Evan dies. My dream would be for God to take us together. I'm better today, still have my emotions on my sleeve, but I want my family around me and I want to be with them. The scary thing about death is that it is so permanent. That no where you go in this world will you see your loved one again. you can search high and low and you will never touch, smell, kiss, embrace, smile and share with your loved one again, that seems unbearable to me. Nothing cuts deeper or more raw than this. This is torture and it is the cruelest torture anyone can endure. I can not image the pain. My own body and emotions try to help me by making me numb and possibly passing out. All of this at the thought of losing the most beautiful, fulfilling, dearest, incredibly loving love of my life my son. My heart goes out to Monica at the loss of her beautiful joy her daughter Taleah. I miss you so much Taleah.
TodayI feel better today. We went to church and I needed to be there, I felt better afterwards. Evan went to his friends birthday party today. He enjoyed it. Evan starts school Tuesday. All kids start Monday but since it's kindergarden then it will be too hectic and emotional for the other kids and we don't want Evan to feel their nerves I know he will have enough of his own. So we will see how that goes. We are enjoying a healthy summer full of friends and going out a lot. I really enjoy spending my days with Evan. Our typical day includes waking up around 8;00 or so and cleaning Evan's face from the bipap, brushing his teeth and changing his diaper. Stretching his legs and getting him dressed and into his powerwheelchair. I then get ready myself and off we go to the gym or playgroup or a friends house or out to do errands. I like going out first thing in the morning and then we are home by Eleven or twelve and Garth comes home for lunch usually. We then stay home all the rest of the day unless we have commitments in the evening. As long as we go out once a day we are good. Some days we stay home all day and that's okay if we had busy days prior. When we are home Evan will watch T.V, play on the computer, ride in his wheelchair and watch me cook or help me cook (When I do cook). Evan is not good at playing by himself so I usually play with him and we pretend we are superheroes and catch bad guys or we are bible characters such as Jonah or Joshua and we go around the big wall until it comes down. If I'm in the mood to play I do and I enjoy it as much as Evan does. I feel like his friend and give him insight on what it feels like to have a friend that enjoys playing with him. Unfortunately I don't play with Evan as much as I wish. Sometimes I just don't feel like playing. but When I look back at my memories of Evan I remember his facial expressions when we pretend and I scream the bad guys are coming then his face gets panicked and he grabs his joystick and speeds away and I usually run behind him or in front of him. That is soo cute. Evan is my friend.
TodayHI, I know it's been very very long since I last updated. Just know that no news is good news. Evan is doing well. No sickness thie summer and as we go into winter I get a little nervous. He did have his flu shot and I think that helps him. He has been remarkebly healthy for being a school boy. He always wakes up saying he doesn't want to go to school, but he always go and is always fine once he is there. I can't say he loves it. He would rather stay home than go to school. He is doing very well in it and has learned to write his name and academically is doing great. I do believe that the reason he doesn't love school is because he is different and although the kids treat him well, he is self consciuos of that fact and therefore is a little shy. That is exactly the reason I have him in school so that he may learn to socialize and watch out for himself. Evan does have a personal aid and I really like his teacher. Like I said the kids like him. I hate leaving him and can't wait to go get him after school but I do admit I like having two hours. Well I am in Nursing school and it's taking up all my free time. I have No free time. There is always reading to do and dishes to clean, laundry to fold, diapers to change, feedings to do, position Evan , attend to Evan, attend to Garth, homework, and work all day Saturday. it's very stressful but it'll be worth it at the end. Thank God for Garth he helps me out alot with Evan and when I have a test coming Garth will take Evan out for a while and let me study. School is taking up all our respite hours so Garth and I don't any time for dates anymore. We used to go out on Saturday evenings and I miss that although we do go out for supper on Saturdays but we just take Evan with us now. Garth and Evan have always been very close but they are getting closer now since we have less people to help us out. well I'm doing well in school and I enjoy it I just hope I can get over some of the jukey stuff I see and smell, sometimes I feel light headed but I am trying to get used to it and I really hope I can make it for the rest of the two years I still have left. Evan is getting chubbier and he is looking great. I will send new pictures to Laura so that she can post them up and some of Evan homework and hopefully she'll put them up soon so that you can see my beautiful son.
TodayEvan is doing really well. He is still going to school and doing well in it. I sent Laura the new pictures and she will put them up as soon as she can. Laura is a mom of two children three children. Her first two died of sma and she has a girl unaffected. so Laura keeps the sites up and I am so grateful that she does. I'll keep more updated as soon as I can.
TodayEvan is still doing well. He is gettting so chubby and so cute. I know he has always been cute:)I just love the way Garth loves Evan. Now that I am at school( that's where I am right now)Garth looks after Evan. He gave him a shower, read him some books or played computer with him, feed him, and brushed his teeth, changed his diaper, tickeld him, carried him around all over the house,tossed him up in the air and CAUGHT him, put the bipap on, got his feeding tube ready for the night, put his pj' on and said a prayer with Evan, turned the Healing Scriptures c.d. on an GAVE EVAN A LOVED- FILLED KISS ON THE CHEEK GOODNIGHT. Turn off the lights and Garth is now exhausted from a full day of high stress work and will now hit the sack himself, ready to wake up 2 hours later to turn Evan at night a cycle Garth and I take turns doing, all night long.The alarm goes off for Garth around 5:30 in the morning and the cycle starts again. Wheeeeww!! All in all I believe and hope that Garth is happy. His job is really really really busy right now and of course Evan is a lot of work too and I guess so am I. But I believe that Garth would rather have it this way than no work and no Evan. I'll tell you about my day when I can. I'm off to my home now, have supper and probably go to bed. It's nine o'clock at night.
Todaywow it's been a long time since I wrote here. Evan is doing well. He has been getting alot of secretions in his mouth and nose and it's harder to understand his speech. the doc put him on a medication that should help him dry out a bit. the only concern is that we do not want him to get to dry or that too will complicate things. Garth and I enjoy Evan so much. Evan loves being the "baby" of the family. He loves to be carried around and is doing better at his powerwheelchair again. He had been having difficulties driving forwards but now he is better. Evan is doing well at school when he goes. I wouldn't say he loves school but he doesn't hate it either. I love to kiss Evan's cheeks and I do so about a million times a day. With school starting I am very busy and stressed. I have a good day if I spend quality time with Evan and that is actually playing swords with him or getting on the floor, or under the table or somthing like that.That and making supper for Garth equals a good day for me. This semester number 2 is suppose to be the hardest and I have about 12 chapters of reading and studying to do as well as 10 hrs a day a week of clinical at needles hospital. Evan is really into starwars right now. God Bless.
TodayIt's been a very long time since I wrote. I will try to keep writing since It is for my own good to keep Evan' journal updated. For a while I did not have a lot of time with Evan. I mean not quality time. I am gone all day mondays at the hospital doina an eleven hour shift of clinical and I am exhausted and Evan is ready for bed at that time which I must admit I am glad for. Then I need to put a lot of studying time atleast 20 hrs a week, I also work 8hrs on saturday and my life is really busy so I have not spent a lot of fun time with Evan orGarth. I feel guilty about that and Evan has had to hear a lot of voice raised arguments between Garth and I. It's always alittle scary when you and your spouse are disconnected. Finally I had spring break and I was able to slow down and Garth and I are connecting again. Thank God. I have played with Evan we have played soldiers alot and we both enjoy that. I love to play with EVan it makes me feel like a good mother when i play wiht my little friend. Garth Evan and I also slpet on the floor of my room one weekend and called it a sleep over Evan thought that was pretty cool. Evan and I have also been having play dates with Dylan and Shaun on a weekly basis and I am grateful for that. I have been cooking almost daily for garth and I and we have been eating together as a family and that has helped to connect us too. Evan has had three birthday parties to go to so far and there is one more this weekend. Evan loves to go to them and I don't look forward to them because it's hard to see my son not be able to run around with the other kids and he hangs out with us while the other kids play physical games. We try to involve him as much as possible like taking him to hit the piņata and pin the tail on the donkey etc put sometimes the kids stare and don't want to sit next to him. Evan also gets nervous and he ends up throwing up and then we need to lay him down and he needs to relax and it's very hard physically and emotionally but Garth and I take him to parties anyway and i am so proud that Evan has those experiences. It's not all negative. Evan does enjoy the mood of celebration and some kids do play with him in short bursts but they are usually too busy running around. I am just happy that Evan is invited to parties and Garth and I don't take the easy way out we go we smile and try to have fun too.
TodayI am finally done with my secound semester in school and enjoying time with Evan. Here are some things Evan has said or done to bring a smile or laughter to my soul. I gave Evan a haircut and Garth has to hold him and hold his head and it's somewhat difficult but possilble anyway I did not give Evan a good haircut. I nicked his hair ( not EVAN) in a few places and I said" darn, I left a couple of holes in your haircut Evan and so the next day he went to school and told me the kids liked the holes in his hair:" I laughed he was pointing them out to the kids in school. He is so innocent. EVan is really into star wars. He knows all the episodes and the names of the characters and has many of the characters too. Evan is really doing great in his powerwheelchair and he loves to move the furniutre around. He pushes the chairs, sofas, and anything he can push with his wheelchair. HE can close doors and push doors opened. Evan can also control the wheelchair inside our van and lock himself in the EZ lock inside the van. When Grandpa Tom was here he laughed so hard when EVAN pushed GARth's chair away when Garth got up for a minute and EVan took off and Said " I better go hide" EVan went to his room closed the door and waited until daddy came in laughing and pretending he was going to give EVAn a knucle sandwich. EVan thought it was pretty funny too. Garth and EVan have a great relationship they love each other very much. EVAn passed kindergarten and is off to grade one at the end of July. EVan enjoyed kidergarten and did very well in it.
TodayEvan is still doing well thank God. Marlen was here very briefly for two days and we enjoyed her greatly. Evan knew auntie Marlen would be bringing him a present so he was very excited and he asked her about it after the initial "hi" when he saw her. Garth, Evan and I went to pick her up at the airport in Vegas. We then went to Caesars palace for lunch and Evan got to see the huge three story toy store. I am so glad when Evan gets to experience new cool things. He really enjoyed it and Garth bought him a toy. Evan also got to see the moving statues and he was a little scared at first but he got over it and especially liked the fire, water and ice story of Zeus. Marlen and I laughed so hard when Evan was so excited to finally get his gift and when Marlen gave it to him he just stared at it in a disappointment gaze. He then said okay open it and played with it and liked it, but his expression was so fuunnnyy, Marlen and I were cracking up laughing.
TodayEvan lost his first tooth August 13,2005. He was very excited about it. Both his lower front teeth were loose and the right one was even more loose. Evan kept wiggling it with his tongue and fingers, it was so loose I was tempted to pull it but Evan wouldn't let me. I was scared to even brush his teeth but it needed to be done. So Saturday morning while I brushed Evan's teeth I noticed this white small thing come out and I knew right away it was his tooth, Evan was surprised and excited and he woke daddy to tell him the great news. Of course he told everyone about it and the tooth fairy came that night and gave him a dollar. It scares me that Evan's teeth are falling out being that he is so young yet, but Marlen says that children's teeth start to fall out between ages 5-7yrs old. So Evan is young but close to that time period. I shouldn't compare Evan to other kids but it's hard not too. Evan does not eat by mouth so his teeth are not strong. I hate to worry about his teeth. Now I worry that the rest will fall too and that the new ones will not come in easily due to lack of tearing and stimulation. I really worry about that and I hate and don't need the something else to worry about. The more it piles on the harder it is to trust in God.
TodayPraise God Evan is doing well. He is enjoying grade one. He has a best friend Andrew. Andrew is actually the one that says that Evan is his best friend so Evan goes along with it. Evan also has a good friend Ethan, Ethan comes over regularly since he lives very close by. I thank God Evan had friends. They enjoy to play with him for a little bit and then they get tired of him so that hurts me some but i should just be glad that he has friends. We walk to school every day and hope to continue if the weather permits. We've been having some trouble with his aids and I hope that someone will last for a while. Evan also started Soccer. He is in a team called VIP and there is only one other boy in his team. its for special needs children. the coaches son plays too just so that there are more kids in it. It's purely for fun and Evan enjoys it. Evan has a uniform and wears chin guards. he goes out there with his powerwheelchair and the kids put the ball in front of his wheelchair and Evan pushes the ball to the goal where he has to drive inside it. Garth and i are trying hard to give Evan as much experiences as possible. I am proud of that.It's hard to be different but together its bearable and completely worth it, anything is worth it for Evan.
TodayI know it's been a long time since I posted. I am sorry. No body regrets it more than myself. I want to use this as journal/diary of Evan, Garth and I. Evan is doing relatively well. I don't think he is getting weaker, perhaps even a little stronger. He is really into star wars, He has seen all the episodes has must of the toys and just plain loves it.He is all boy. He also loves to fight with the action figures and toy soldiers. We had a great Christmas. My mom, dad and Marlen came to visit. They are so good with Evan. Marlen plays with Evan alot. She plays at his level and does not tire easily, He just loved that. And because of it he just Loves auntie Marlen. Evan would get much joy out of being with his auntie Marlen. the reason that I mention playing with Evan is because it's easy to play with Evan for 5 minutes but more than that it gets boring and its not something adults have the patience for, they'd rather talk to adults and do laundry or dishes or whatever else needs to be done rather than spend 1/2 hr truly playing with Evan. Shooting each other with toy soldiers and using your imagination can be fun though. making the time and not being self centered and making a little boy happy is sure worth it. It makes my day when I can really play with Evan. I feel accomplished. Garth is great at playing with Evan too. I do need For Evan to learn to play alone. He is not very good at that. Unless he has me or GArth play with him he will not play and I have to really get him to learn to play by himself. I that regards i have spoiled him to much. I will try to teach him to entertain himself.
TodayI have no idea how some of those posts get on Evan's site. I wish they won't be there. Evan is doing well. He has gone to school every day for a whole week and a half. That's impressive specially since this time of the year there are so many sickness. This winter there seems to be a strong flu going around. I got it for 4 days I was almost bed ridden it was so bad. Evan got to watch a lot of TV. I wore a bandana on my nose and mouth to avoid contaminating Evan and washed my hands a lot. Thank God neither garth or Evan got sick. Some funny stories that EVan has said: GArth was fixing our kitchen sink and his hands were filled with messy staining gounk and he was about to reach for my very new, favorite Christmas present hand towel and Evan screamed " NO daddy don't use that towel" Thank God for Evan.
TodaySome more funny stories that have cracked me up: WE were going to Vegas and I forgot to pack some toys for Evan so I told Garth that he could buy one toy for Evan at the toy store while I went to another store. When we meet up again Garth told me that Evan was mad because he wanted two toys instead of one and that he only bought him one so Evan added, " yes, that really grind my beans". One time my sister Mariam was playing with Evan they were playing toy soldiers and Mariam was yelling ...oh ahh nooo please nooo .... as her soldiers were being shot by Evan's soldiers and Evan replied " Auntie Mariam, soldiers die quietly". Evan was racing his powerwheelchair around the inside of our house and i said to him good job Evan do it again and he said, " just wait mom, I've got to catch my breath". After coming home from school he said his brain was not working properly and i said what happened he said" I think I got a little dirt in it". I had taken Evan to burger king bought him a happy meal (which he does not eat of course but he likes the toy and I'll eat the food) and I also bought him a watch since it was $2 if you had a real meal so I had one of those too. the watch was Star wars so that's the only reason I bought it. Anyway i also took him to rent a movie since he has a $20 gift card from Hollywood Video and once he were there I think he rented two videos. I then asked him if he would pay for my one and he said, " no". What a brat:) When I ask Evan if he had one wish what that would be he says, " I wish Star Wars was real":)
TodayEven though I pray for a miracle everyday for Evan, I trust that God knows why he allowed sma in our lives.That does not make it easier though it just gives me a reason to not be so bitter or resentful. I think that perphaps if Evan could walk and be an abled body little boy there would be worse dangers and heavier crosses for him and us to bear, that quiets my rage and hopelessness i sometimes feel. I seldom cry over sma anymore but about every two months I need a good all out top of my lungs, cleansing stress relieving cry. I do acknowlegde that Evan is such a lucky little boy. Garth and I adore him. We kiss him constantly every day, we tell him we love him constantly too. We pray together at supper time and sit at the table together almost every day, to me that is a family. When people see us in the world they probably feel sorry for us, but if they knew how much love there is for our son inside our walls I think they would not feel sorry for us and perpaps envy us. It's not always so great but it usually is. IT's alot of work to be a family. Garth and I deicided not to take the easy way. We choose not to have cable so that we can focus on each other. It would be way easier if we could put Evan's portable dvd player in his room and Garth and I could relax in front of the TV for an hour in the evening, but then I fear this might get to be too comfortable and we would end up putting Evan in front of the TV for hours on end that way we could have more time to do whatever we wanted with less distractions, but we choose not to. Evan is a lot of work, he needs to be feed every 2 hours, needs to be positioned changed every hour or every half hour, he needs to have his diaper changed, he needs to have his hands placed on his joystick when it falls off which it does every fifteen minutes or less, he needs to have his head picked up when it falls every fifteen minutes or so aswell. my point is Evan is a lot of work, but for me and Garth it is our honor and privilage to take care of our precious son. he is a joy to us. He makes us laugh, he entertains us and keeps us on our knees. I ask the Lord to give me a strong back, and healthy life and a long life so that I can take care of Evan, it is my gift and my love and my priviledge to do so. I love you Evan for ever. I am grateful for you.
TodayGarth will be sending some pictures to get posted on this site soon.
Todaywell our healthy streak ran out. From around MOnday Jan 16 Evan was feeling unenergetic and somewhat down. I kept him home from school. He had a persistent cough and alot lot of secretions. He stayed home Tues, Wed and Garth was not happy that I kept Evan home, so I send him to school Thurs morning and they called me 1/2 hr later that he was not feeling well. So I picked him up. I would make Evan nap if he did not go to school and he was resltess he did not nap well, he also started not to sleep well either. My stomach now gets tighter and I become nervous since I know Evan is getting pretty sick, Thurs night Evan did not sleep well at all. Friday he was laboring to breath. I now was very nervos and anxious. I also woke up with a runny nose and not feeling well either. Friday nite Evan had a temp of 101. He could not sleep at all. He was moaning and groaning all night and needed to be suctioned every 10 mins. By this time I am exhausted, tired, sick and I neeeeedddddd my sleep!!! After Evan was given motrin he slept for atleast 2-3 hrs that night. I had planned a movie night with some of my girl friends that Friday night and I had to cancel it I was too sick to go, I felt bad since it was in my honor since I am starting to school Tuesday. Thank God it's the weekend. Garth is healthy and I am praying that he stays that way. Evan is still really sick, He can not tolerate being fed and complains about his stomach hurting. He is on bipap all day and we are even giving him oxygen to try to making it easier for him. We are suctioning him almost every 15 mins to every 1/2 hr. He needs to be suctioned so much that I collected 500 ml of secretion in 3 days. I am trying to stay on top of doing cough machine as much as possible. Garth and I fight over this since he does not do the cough machine as much as I would like it done. I believe the cough machine helps shake those secretions in Evans lungs and loosen them. I try to give Evan water via Gtube as much as possible but he is complaining about his tummmy so much when I feed formula that I am almost tempeted to just give him sugar water only. He doesn't compalain about the water only the formula. I wonder if the formula is causing the problem I just wonder why all of a sudden? Well I feel so terrible. I have a nasty cold, I am trying to rest while GArth takes care of Evan, Evan is pretty sick though so I can't rest. It was like that all weekend. Evan did not have a temp Saturday and he seemed a lot better. He was okay during the day, He watched alot of TV, He was on bipap off and on during the day no oxygen, complaining a little less of his tummy so I did not call the doctor. That night he had a terrlble night. I was sleep deprived that I wanted to just close our door and his and stick some cotton balls in my ears. I was so mad at God I was too tired to pray, I would just mutter please God let Evan sleep for 2 hrs straight please just give me 2 hrs of good sleep and that did not happen I was so mad, I asked the Lord to take Evan home if that was his will, I couldn't take the moaning and groaning of discomfort Evan felt. I could take the sleepless nights anymore, I was exhausted, I was sick, I was stressed, I was desperate, I was scared, I was so tired of being scared of sma. Iwas tired of not getting help from God, I just want to sleep, perphaps even never wake up(don't worry I am not suicidal, I am just posting how I felt, I am not holding back my emotions even if they are scary to read). I was beyound exhausted. I don't function well without sleep. Those emotions I just described are emotions of battling emotionally against the demon of sma. I fought for three days and nights almost steady against it and on the third day of sleeplessness I was ready to throw in the towel. I asked God to take EVan once and for all. The suffering I can't take anymore. I can't bear it any longer. I am dying inside and I am dying spiritually. I need God to take control and do something drastic, either take Evan's life from this world or remove sma from our lives. I would rather have God sma from our lives. That is my dream that is my prayer. Sunday Evan seemed better, LIke I said he seemed alot better in the day but once athe evening came and the night came he just crashed. We gave him peptobismal and motrin and he slept better. I had more energy now and I was feeling better too. I called his Dr and he came to see him at home. Evan was doing alot better. He decided to do a ct scan of Evan's stomach because of his complaint and check out his lungs while they were at it. Monday we went to the hospital and got the scan Evan was very brave and he thought the "camera" was cool. Evan was almost 70% back to himself. Once the scan was over, it showed that Evan's stomach was fine they could not see any problems, but he did have pneumonia. I was not surprised, but I was surprised how quickly Evan was recovering. That day we got his antibiotics and he has been sleeping well again. I am doing a lot lot better from my cold almost gone and I have energy again. Most of all we are all sleeping well...Yah yah yah... Evan is getting better and better again, he is almost back to 100% again, He is doing so well that he could go back to school but I am scared to send him there is so much sickness right now I really want his body to be in good shape before I send him back. Garth thinks he should go back, I disagree. Poor Evan has been home for almost two weeks, I finally said to GArth lets go out and do something fun with Evan so we went to scooters and EVan, GARth and I had great time. Today we went outside and fired the rocket ship and we really enjoyed that too. It was so funny the rocket fell on top of the schools roof and it seemed impossible to get up there but Garth climbed like spiderman and got it down for Evan. I was really impressed and scared too. I am so proud of GArth I did not know he was so athletic. He doesn't ever do sports or excercise so I was really shocked. Another bragging point about GArth is that he took good care of EVan and I when we were sick, GArth would but blankets in the dryer for us and heat them up and then bring them to us. I also got soup and crackers in bed....AHHHH. I am so blessed to have GArth and I am so thankful to have EVan in my life. Sometimes it tremedously hard but it is sooooo worth it. I adore my son.
Todaywell our healthy streak ran out. From around MOnday Jan 16 Evan was feeling unenergetic and somewhat down. I kept him home from school. He had a persistent cough and alot lot of secretions. He stayed home Tues, Wed and Garth was not happy that I kept Evan home, so I send him to school Thurs morning and they called me 1/2 hr later that he was not feeling well. So I picked him up. I would make Evan nap if he did not go to school and he was resltess he did not nap well, he also started not to sleep well either. My stomach now gets tighter and I become nervous since I know Evan is getting pretty sick, Thurs night Evan did not sleep well at all. Friday he was laboring to breath. I now was very nervos and anxious. I also woke up with a runny nose and not feeling well either. Friday nite Evan had a temp of 101. He could not sleep at all. He was moaning and groaning all night and needed to be suctioned every 10 mins. By this time I am exhausted, tired, sick and I neeeeedddddd my sleep!!! After Evan was given motrin he slept for atleast 2-3 hrs that night. I had planned a movie night with some of my girl friends that Friday night and I had to cancel it I was too sick to go, I felt bad since it was in my honor since I am starting to school Tuesday. Thank God it's the weekend. Garth is healthy and I am praying that he stays that way. Evan is still really sick, He can not tolerate being fed and complains about his stomach hurting. He is on bipap all day and we are even giving him oxygen to try to making it easier for him. We are suctioning him almost every 15 mins to every 1/2 hr. He needs to be suctioned so much that I collected 500 ml of secretion in 3 days. I am trying to stay on top of doing cough machine as much as possible. Garth and I fight over this since he does not do the cough machine as much as I would like it done. I believe the cough machine helps shake those secretions in Evans lungs and loosen them. I try to give Evan water via Gtube as much as possible but he is complaining about his tummmy so much when I feed formula that I am almost tempeted to just give him sugar water only. He doesn't compalain about the water only the formula. I wonder if the formula is causing the problem I just wonder why all of a sudden? Well I feel so terrible. I have a nasty cold, I am trying to rest while GArth takes care of Evan, Evan is pretty sick though so I can't rest. It was like that all weekend. Evan did not have a temp Saturday and he seemed a lot better. He was okay during the day, He watched alot of TV, He was on bipap off and on during the day no oxygen, complaining a little less of his tummy so I did not call the doctor. That night he had a terrlble night. I was sleep deprived that I wanted to just close our door and his and stick some cotton balls in my ears. I was so mad at God I was too tired to pray, I would just mutter please God let Evan sleep for 2 hrs straight please just give me 2 hrs of good sleep and that did not happen I was so mad, I asked the Lord to take Evan home if that was his will, I couldn't take the moaning and groaning of discomfort Evan felt. I could take the sleepless nights anymore, I was exhausted, I was sick, I was stressed, I was desperate, I was scared, I was so tired of being scared of sma. Iwas tired of not getting help from God, I just want to sleep, perphaps even never wake up(don't worry I am not suicidal, I am just posting how I felt, I am not holding back my emotions even if they are scary to read). I was beyound exhausted. I don't function well without sleep. Those emotions I just described are emotions of battling emotionally against the demon of sma. I fought for three days and nights almost steady against it and on the third day of sleeplessness I was ready to throw in the towel. I asked God to take EVan once and for all. The suffering I can't take anymore. I can't bear it any longer. I am dying inside and I am dying spiritually. I need God to take control and do something drastic, either take Evan's life from this world or remove sma from our lives. I would rather have God sma from our lives. That is my dream that is my prayer. Sunday Evan seemed better, LIke I said he seemed alot better in the day but once athe evening came and the night came he just crashed. We gave him peptobismal and motrin and he slept better. I had more energy now and I was feeling better too. I called his Dr and he came to see him at home. Evan was doing alot better. He decided to do a ct scan of Evan's stomach because of his complaint and check out his lungs while they were at it. Monday we went to the hospital and got the scan Evan was very brave and he thought the "camera" was cool. Evan was almost 70% back to himself. Once the scan was over, it showed that Evan's stomach was fine they could not see any problems, but he did have pneumonia. I was not surprised, but I was surprised how quickly Evan was recovering. That day we got his antibiotics and he has been sleeping well again. I am doing a lot lot better from my cold almost gone and I have energy again. Most of all we are all sleeping well...Yah yah yah... Evan is getting better and better again, he is almost back to 100% again, He is doing so well that he could go back to school but I am scared to send him there is so much sickness right now I really want his body to be in good shape before I send him back. Garth thinks he should go back, I disagree. Poor Evan has been home for almost two weeks, I finally said to GArth lets go out and do something fun with Evan so we went to scooters and EVan, GARth and I had great time. Today we went outside and fired the rocket ship and we really enjoyed that too. It was so funny the rocket fell on top of the schools roof and it seemed impossible to get up there but Garth climbed like spiderman and got it down for Evan. I was really impressed and scared too. I am so proud of GArth I did not know he was so athletic. He doesn't ever do sports or excercise so I was really shocked. Another bragging point about GArth is that he took good care of EVan and I when we were sick, GArth would but blankets in the dryer for us and heat them up and then bring them to us. I also got soup and crackers in bed....AHHHH. I am so blessed to have GArth and I am so thankful to have EVan in my life. Sometimes it tremedously hard but it is sooooo worth it. I adore my son.
TodayWe suspect that Evan stomach pain were from the pnuemonia in his lower right lobe that was irritating his diaphram. I did not call the doctor sooner because Evan did not have a temperature but only two days and not consecutevly. he also seemed okay during the day it was at night that he would take a turn for the worse. Well thank God that is behind us now. This is the worst time of the year for sicknessess and we go through this once twice or even three times in the winter. I hope this is it for this year and ever, its so scary since I know Evan can die from this. He is sucha little fighter, and so understanding, one of his sick nights I was so tired that I said to Evan in a very strong and firm not screaming all though I wanted to. I said to EVAn, " Evan I know that your tummy hurts and your legs and that you don't feel well, we have given you medicine and we can't do anything else for you, please don't call us unless there is something that we can hlep you with like roll you place more pillows under your legs or something like that, we are tired too and we need to sleep okay.... and he said okay" I felt bad but I needed Evan to understand that we couldn't keep getting up every 10 mins for him to tell us that his tummy or legs or just moan and groan. I know he couldn't helpl the way he was feeling but we couldn't do any more for him either. He was so good that he kept quiet even after being so miseable for an hour. He bottled it up for me, I was so impressed of my little warrior. Evan is very understanding. oh that |
