Date:

09/24/2005

Time:

11:44 AM

Today

Okie dokie, Sorry for not updating sooner, but at things go, they just dont work out in order for me to get away. So after that wonderful swallow study that said he passed, it turns out because of his symptoms, they all agree with me that he did for sure aspirate. Over night he was able to work the rest of the junk out and by Thursday morning he was all clear again!!! Praise God but let me tell ya, getting aspiration pneumonia due to baruim is not a good thing as it is sticky and very difficult to get out of the lungs. Lets see, I took my next anatomy test and well I passed but definatly not happy. I got a 80% on it. I did very well on locating the bones and muscles but I did not get any of the orgins or insertions right (help any one?) Kathy I got the laptop yesterday and they are getting me access to their group so I can do my work in Aschdons room. Aschdon is so excited that I will be able to do my school work and not have to leave his side. He even told me he hopes I can get even a better A! I love my kids!! So as for today, they are giving him three hours on bi-pap three hours off and so on untilt he night and then he is on it all night. We are now working on getting him to eat (nothing to drink unless it is a milk shake or something like that which is thick) We are here at least another week because he needs some intense rehab in order to help him gain some needed strength back for us to go home. Ya all know how much fun we have had to get Medicaid to do anything for us, well they have said if Aschdons leaves the PICU unit for PT they will not pay for his PICU stay. Lovely isnt it!! SO We have an awesome PT that is going around that. There are some empty rooms that they dont use in the unit so they have turned those into PT rooms for Aschdon. So he will be getting his PT and still be in the PICU!! He also has serial casting again on his right let just because he wont cooperate for the knee imbolilizers. A repritory therapist drew a Teenage Mutant Ninja Turtle on it for him so he isnt minding it as bad. I have to run as I have a killer migraine, I look so bad the nurses was able to tell that I had one with out me saying anything. Ugh... update when some thing exciting happens! Hopefully good exciting! Kenya

Date:

01/15/2005

Time:

11:52 PM

Today

Hi!! I am sorry it has been forever since I have updated this site. I wanted to let you all know that I have not forgotten you. Aschdon has a caringbridge page that I use to update his day to day or week to week situations. I am using this as a more of a picture update and past history. I invite you to stop by Aschdons caring brdige site and see how he is doing. www.caringbridge.org/wy/aschdon I hope to see you there. Love Kenya

Date:

07/04/2004

Time:

03:12 PM

Today

Happy 4th of July!!! Hi, I just wanted to let you guys know that Aschdon still has a respritory bug that seems to just love him and wont go away. Also the other day he fell over on his side and hurt his arm. For those taht dont know Aschdon does not have the reflex to catch himself when he falls over, he likes to fall over in order to lay down well he was goofing around and landed on his arm wrong. I took him to the ER and he has a soft tissue injury. Basically he came close to breaking his arm but just hurt the tissue around it. They thought there might be a fracture at first because at the top of the lower arm bone, his bones are bowed so they took an x-ray of the other arm and it is the same way. (Let me tell you this was hard to see) So they ruled out a fracture but we are also to have our doctor look at the x-rays when we go in on Wednesday for another check up on this darn cold. He has to have his arm in a sling for about 10 days and we have to try to get him not to use it. Perfect timing for this considering he goes in for surgery July 30th. (note there is to be a sarcastic tone here) it was hard for me to look at the x-rays because Aschdons bones are well, hardly there. They have so little density to them, they litterly are about the size of a large pencil. I know he is skinny and he bones were small but I was not expected to see them this small. I keep thinking ok he has gone through so much and then something else comes along. My husband and I are going to be talking to his neurologist to see if there is anything to help his bone density in his arms. Well I believe I am going to sign off now, tired long couple of days. Thank you to all of our friends and even though I havent been able to visit and sign I am thinking and praying for you! Kenya Please take a moment out and sign his guestbook it would mean alot to him, even if it is just a hi.

Date:

02/28/2004

Time:

12:10 AM

Today

Thank you for all the prayers for my grandpa. He came through the surgery just fine. Now he is frustrated because he is not able to walk unassisted as of yet. He is a very stubborn wonderful man and I tried to reassure him that it will happen and that he needs to remember that he just went through a major surgery a few days ago and he needs to let his body recoup and then he will be up on his feet again. Aschdon is doing pretty good. As some of you know he is participating in a clinical drug trail. We were requested to up his dose this week so now I have to deal with a cranky tired boy for the next week. He also for some reason gets morning low grade fevers. However after a week on the new dose he will be back to his old self again. I am not sure what this medicine will do for him but I am pleased that we are able to participate in something that may be able to help so many other kids just like Aschdon. He doesn’t like taking the medicine very much because since he can’t swallow pills, we have to open it up and sprinkle it on some pudding. It doesn’t taste very well but he takes it for me with out too much of a fuss. The only main difference i have been able to tell so far is that I have been able to increase the amount of Tolerex he is getting in his night feeds which is wonderful. My goal is to have him on two packets a night and right now we are up to one packet and 2 tablespoons. Oh and Aschdon is still gaining weight. I can not believe how big he is getting. He now is a whopping 28 pounds!!!! We are looking at getting a new therapist that is going to get us started on a stretching routine; she is also going to start hydrotherapy with him. She is already talking about helping us get him a stander as soon as she can. Unfortunately she is only a temporary PT her but I am happy to have her as long as we can get her. Sahala is doing great. However in PE today she fell and landed pretty hard on her right hand and hurt her wrist. We are to watch it over the weekend jus tot make sure nothing is broke but it looks like as of right now she just sprained it good. She lost another tooth about a week ago and wrote a letter to the tooth fairy and asked the tooth fairy some questions that needed answered. In the morning she found the answers and was so pleased. I just love kids!! Arrayia is well umm being a bit shall I say bratty. I don’t know what it up with her but she is into throwing fits and arguing and being mean all the time now. I don’t know if it is part because i have not had the time to spend with her like I was. She has a hard time finding something to do when I am trying to study. She thinks it is great I am going to school but doesn’t understand I need to do my work. She is always bored and says she is hungry all the time. I know she really isn’t hungry because she only says that when I wont give her an idea what to do. I am at a loss of what to do with her. I am overly tired and stressed and I know I will be able to function better when I get caught up on my sleep and am able to catch up on my school work. Richard and I are looking at buying a house. It is great very handicap accessible; the problem is the realtor is asking way too much for it. It has become more of a hassle than I can deal with right now so I asked Richard to just take care of it and I will be happy with what he does. I just can not handle taking care of a house deal along with every thing else. However if we do get this house it will be a very wonderful blessing so if you would please say a prayer that the people will accept our offer and understand why we are bidding the way we are. (Richard is doing an excellent job on this and has proof of everything in order to back what we are saying, he is such a great guy and our family is so lucky to have him) Well this is enough of a novel for now. I will try to up date more often but I find it hard to get on the computer when I have so much house work and school work to do.

Date:

02/12/2004

Time:

08:10 PM

Today

Ok so this update is late in coming but at least it is here right? Happy Valentines everyone!! Kenya Ok so now for the rest of our week. We just hung out at Richards Aunts house all Tuesday, nothing exciting there but it was nice to just be able to sit and do my school work while Aschdon was busy playing the play station with his cousins. On Wednesday, we were supposed to be to the hospital by 9am for our first appointment but of course my life has glitches. The alarm we used went off on time but I wake up to the music and well because of the nasty weather the radio station was out. So I got a late start. Considering all of that we got there only 10 minutes late but part was because I had to park so far away from the building and had to carry Aschdon and all of his old braces plus because of that and the cold out it gave me a major asthma attack. I got half way to the orthopedic lab when I just had to put Aschdon now right where we were walking because I could not breathe. Let me tell you not breathing is scary. So once we got there the guy was not going to have enough time to make a new TLSO and I said that was fine because I wanted the leg braces more right now (he still has a TLSO that will work for a bit) I am so excited to get these new braces as they look like they will be really supportive and give us a chance to have him bear weight in them. Bad side to this is that they will be done in 3 weeks and they can not just mail them to me. We have to drive all the way back for them to fit them and adjust them and then come home the next day. It is frustrating but oh well you do what you have to do some times. Ok then after that appointment ( oh ya the guy is cool, I talked to him, well cause I am chatty and found out that he immigrated from Germany in the 1950's right to Salt Lake and has been there every since. He was really cool) any ways we went to the research place where we checked into our room. We were supposed to have met with Jeanine (the PT) but she spaced the appointment. While hanging out in our room she called and apologized over and over and I told her not to worry about it because I figured either she forgot or I had my day wrong so no biggy. Well then she told me that his Wheelchair was in. I was so excited because we weren’t supposed to get it until Friday!! So off we went to the rehab department. Man oh man I wish I would have had a video camera (douffy me forgot the regular camera too) because when we went into the room the look on his face was worth a million. He just lit up and started clapping his hands and was so excited. Sherrie (the lady that made this possible) picked him up and put him in his chair. I can not believe how well she made this to fit Aschdon. He sits so good in it. They fitted it for a bit until Aschdon being so anxious to try it out was driving them nuts (in a good way) so they let him drive it around. He loved it, and he was a very careful driver. There was a boy in a manual chair in the hall way that was passing by and he gave Aschdon a hive five!! It was so cool. While they finished fitting him in the chair and getting it all arranged we met with the OT. Basically I am doing already what she showed me to do and we got a new mikie splint for his wrist. Kris is a very kind woman. She told me if there is anything I need just to let her know even if it is just for a reference. So after all of that we were off to our room in the research department again. It was so cool for him to be able to drive himself there. He did get tired and we had to stop and rest a couple of times but he did great. Once we got up there all the nurses at the station had to watch him drive around. Of course Aschdon and I did some laps around the station (for any of you that have been there you know what I mean). After awhile he wanted to go and play the play station again so we went to our room. While in there Mary (she is a nurse that has seen Aschdon almost every time we have been there for the study) made Aschdon a license plate for the back of his chair. I did take a picture I just don’t have them turned in but I will soon. That evening we met the first family that was there with us. They live in Canada. Their little boy is named Jackson. Aschdon and Jackson got along absolutely wonderfully. They are one year apart but have the same exact interests so they played all evening. Jackson has type 3 and can walk (granted when I say walk I am not meaning like most people would think as it was hard for him but man he did it good) Jackson and Aschdon had a race. Aschdon put his chair in the lowest speed and Jackson walked. Aschdon won and boy did Jackson get mad so after that no more races they just walked around the nurses station ......a lot. it was so cool. They look and act a lot alike. I have a picture of them as well. I had a wonderful visit with his dad, where he told me that he has SMA. See when they found out about Jackson they went and got the carrying testing done and found out that he actually has the deletion. He has 6 SMN2 copies. He shows no signs or symptoms. He was a great guy to talk to. I got to briefly meet with his wife who is a speech therapist. She is a very lovely person as well. They are planning on going to the conference in Chicago as well. Ok so now for Thursday, went for the Dexa scan. Good news is that Aschdon still has no degree of scoliosis!! When we see it, it is purely positional. I was so excited by that. I was telling her I am pretty picky with how I sit him and lay him down and she said that his is the best spine she has seen in a sma kid so far. He was laying there with his arms up just relaxing and she said that is a great position for him. I told her he actually sleeps like that a lot. She explained that is great because it helps elongate the spine, open his rib cage up and makes it so he breaths better. We were then off for the MUNE count. It took quite a bit to calm him down but once he was it went nice and easy. He is staying stable at about 20 MUNES. Of course when it went to taking the blood he panicked and cried and cried. We went back to our room and he screamed for 2 hours after that it was horrible. Finally he calmed down, he drove around and then played with Jackson some more. I could not believe it but Jackson’s parents bought Aschdon a stuffed Scooby Doo. It is so cute and Aschdon has been hanging out with it since. Well that night Jackson got sick (not when he was in our room) but I went in and checked on him poor little guy. We didn’t get to see them the next day as they had to leave early in the morning for their flight back home. For PT Aschdon did not want to cooperate at all and was crying and crying. Well Mark recorded him crying and then played it back. Aschdon stopped crying and started laughing so hard if he would have been sitting up he would have fallen over because he was laughing so hard. But he then worked for them and we were able to go. He then went to go and get the medicine and talk to Dr Swoboda. Nothing complicated he just has to have the med two times a day and then in two weeks he will get his blood taken and they will see if they need to up it, keep it the same, lower it or possibly at carnitine to what I am giving him. We did get to meet another family as well but they were not there much. Their little boy is named Kale and he was just so darn cute. His mom is the chapter present for the FSMA chapter near buffalo New York Well that is the just of the trip sorry for the novel. I am sure I am forgetting stuff but I have so much to do and I was up all night with a sick Aschdon. Who still has a fever right now too

Date:

01/27/2004

Time:

01:00 PM

Today

First I want to thank everyone that has signed his guest book and guest map. Aschdon has a hard tiem understanding that there are people in other places besides were we have been so it is really fun to show him where others live. I dont think I posted but Aschdon aspirated on a french fry last week and then an apple the day after. he has just been not feeling like himself, really cranky, taking naps again and running fevers off and on. He is much better now but his "email" sure helps him feel beter, so thank you!! Ok so now for the update. Hi all, well the last couple of days have been interesting to say the least. On Sunday I stayed at a friends house IN Rock Springs. The roads to Rock Springs was horrible, well parts of it. There were like 60 miles where you could barely see the road, talk about scary but then all of a sudden it was clear up till we got to town where it was really windy so blowing snow all over. Any ways, I stayed at my friends house and well as a kid they had one cat, no problem just stayed away from it, I didnt know thay they had three!! Talk about putting me into allergy over load. I took a zyrtec, 2 bynadrils, and another decongestant just so I could breath well enough out my mouth. I was also having to take my asthma medicine every hour. I know that is too much but I had to breath. It was horrible, I seriously felt like I was going to die. To top it off the room we stayed in was freezing (like the whole house) and when I got up in the morning my jug of water that I have by my bed had chunks of ice in it!! There were 5 blankets on the bed but that barely kept me warm, for some reason Aschdon had his internal heater on so he was fine, lucky guy. The good that came out of it is that she works on JC Pennys and they had alot of stuff on clearnace. We went down town and I got 4 pairs of slack type pants for aschdon for only 2.50 (on top of the clearance she let me use her discount and she gets 40% ) Well the drive to Salt Lake was ok, not too slick, in town I missed my street but was so proud of myself because I was able to still find my way to the hospital!! The appointment we had was with the Orthopedic surgeon. We were 2 hours early but they said they would see us any ways. They took an x-ray of his legs. The doc showed me before and after pictures and boy talk about a difference. Made me even feel better that we had made that choice for him. Now he did not comment on whether or not Aschdon has scoliosis or not so I will be asking Dr Swoboda but he did say that he doesnt feel Aschdon needs a TLSO because he is extremely flexiable. I told him I wanted one any ways because he is growing right now and I know with growth spurts the TLSO can help them. He said if I want he will write me a script for it but I already have one form my intown doc so not worried there. So we are looking at seeing him again in three months when we come back for the SMA study and that is when we will talk about getting the plates out and another issue we have. Ok I think I have mentioned that on his right leg the bottom part turns out now. I talked to him about this and he said what happened is that he has always had this problem but we didnt know it until the top half of the leg got fixed because it was turning inward so with that fixed it shows the problem with the lower part of the leg. It is not an SMA thing just how he was made, which stinks too. However he said we have the choice of leaving it be or when he takes the plates out he can correct it but it is our choice but in order to make the best choice for him he needs to be in a stander and weight bear because then we will see if it hurts him or not and if it does it will need to be corrected so he can stand in his stander (when we get one of course) It is a tough choice to make but now we have to push for a good stander asap so we can make the best choice for him. He says Aschdons legs look great, they are the same lenght now, have full rotation and his contractors are now only 10 (but part of that is how he was made as well, we will never get a full correction, 10 is the best we can do. So we then left the hospital off for Kemmerer to stay with Richards Aunt and Uncle. Theya re wonderful people and offer their home to us when ever we are in the area. Aschdon has had a ball playing with Skyler and Samatha. Today we are doing absolutely nothing, well I have a bunch of home work but we dont have to go any where. First thing tomorrow morning we are off to Salt Lake again, first appointment is with the othro clinic where he will have new AFOS and other stuff made for him and then we will be seeing the PT there. We will check in for the study and hang out for a bit then we go to his OT appointment where they will look at the best ideas for bracing for his left wrist so he can get more use out of it. Ok enough of a novel, update when I get home on either Saturday or Sunday. Kenya

Date:

01/08/2004

Time:

07:21 PM

Today

It is times like these were there are sick kids and so much other going on that it is hard to mention good news. I have thought about keeping it to myself and just waiting to share it but ya know some times you get so excited over and you just feel like you are going to explode. After such a hard year last year, not getting equipment, surgery, being life flighted and many other head aches this year looks to be a bit more promising. It is only the 8th of January and so far we have received a new bi-pap (not the one we wanted but at least we have one now) his brand new cough assist!! I am starting school in two weeks, Aschdon will be starting on the depakote and then today I got the new that.. Aschdons power chair was approved!!!!!! I am so excited I can not even tell you. Of course how things go it probably will not be done by the time we go to Utah but at least he will be having one. The lady that has been helping us said that she is going to try to expedite the process so hopefully he will have a new chair by the end of this month!!! I just am beside myself because for once things are working out, I don't have to cry or scream or get upset at any one!! Of course God was watching and sent a little angel to whisper in my ear today. I had a feeling I had to call and check up on if we had gotten approved or not. I called and talked to the lady and she said she was expecting the paper work but it had not shown up yet. I told her that I was told that it was sent to her office for her approval so she put me on hold and went and checked. Come to find out his paper work had gotten dropped and placed on some one else's desk. She found it, got the needed signature and said it was a go!! So if I hadn't called then who knows how long we could be waiting for a response since it was slipping through the cracks. Of course with getting a power chair other problems arise as it is going to cost 17,000 to convert our van or as a temporary fix we can get a 500 portable ramp. Ugh if it isn't one thing it is another but at least my son will be getting a chance for the first time in his life for independence of some short. Now for aupdate on othe rstuff. Our Christmas was great. Aschdon belongs to Hugs and Hope and they assigned some wonderful elves for my children. It was a very special Christmas watching the kids open gifts from their Santa's Helpers and just loving it. Our Elves were very generous and made it possible for us to have a Christmas this year. Aschdon is doing good, he is back in school and loving it. There have been some situations going on that the teachers are trying to find some books on. Example some thing about My Wheelchair is my Body. It has started to become a problem that other kids are playing with his chair and trying to push him around and Aschdon is not liking it. The school wants a way to explain to the kids in a kind way that his wheelchair is like his legs and that is part of his body and needs to be respected as his personal space just like thier legs or arms and such. Also the other day Aschdon was sitting in the hall and a class came in and all the kids went and gave Aschdon a kiss. All in all I dont think that is bad because he is a very popular kid and all these kids are only 3 and 4. But the staff said it is unacceptable because of that case awhile ago where that preschooler kissed another one and the parents sued. What has society come to? Anyways they are looking for a book on no kissing or something along that line. His aid is looking at continuing to be his aid when he goes to kindergarten. I absolutey love that she is wanting to go with him because she has known him since he was one and I trust her with my son. My girls are doing great as well. Sahala has her school play this month, which unforunatly I am going to have to miss because will be in Utah for Aschdons appointments so I am hoping my husband can find a way to tape it. Arrayia is doing well in school as well. Learning alot and looking forward to going to first grade. My only problem is that she has started talking in a baby tone and I cant get her to stop. She always says ok when I ask her to and then she stops for a bit but then starts it again later. I tried to explain that they will put her back in speech if she does this because we cant understand her very well when she talks like that. Well that is all for now. I will try to update when I can. I start school in two weeks and I am going full time night classes so I dont know how much computer time I will have but I will post when I can. Thank you to those that sign Aschdon's guest book and guest map. It was a wonderful surprise to recieve so many enteries today. We havent had any one sign his book in quite awhile. It just highlighted an already wonderful day. Thank you Cathie at Hugs and Hope for taking notice.

Date:

12/23/2003

Time:

11:35 PM

Today

Well all, please add Aschdon to the prayer list again as he came down sick today. He has not had a fever over 100 but is very tired and has that lathargic look to him. Tomorrow bright and early he is going to the doctors to rule out the flu. On the upside Santa came to our house tonight and gave the kids each a gift. It was priceless seeing their faces. Aschdon was chipper through the whole thing and then after wards he was sitting against teh couch and looked up at me and asked me to bring him upstairs to his bed as he was feeling sick and needed rest.

Date:

12/17/2003

Time:

03:13 PM

Today

Whew, I dont know if I am just overly emotional because Richard hasnt been home for three days or if it is the holidays. I am just to where I about cry over anything. Just wanted to share a little pity me thing. Last night my daughter Sahala had her friend over (Sadie) Well Sahala, Arrayia, Sadie and Aschdon where all in Sahala's room listening to Barbie Girl. Aschdon was sitting in his chair and the look on his face about killed me. He was looking at the girls dancing around and I could just see that he wanted to do it too!! I went downstairs and about started crying, went to call some one and there was no one to call that would understand how I was feeling. Ya I know right now I am sure lots of you will offer me to call you and talk to you but I know you all understand the feelings. It hurts to know that I dont have any one to call in my family or any local friends that would understand. Now I love the news of Taleah and Colin and was so excited and wanted to share the news with some one and I ended up in the same boat. I hate being so alone in the real world. I have my internet family that understands and that is wonderful but some times it would be so wonderful to just be able to call some one and be excited about something or be sad and have some one to talk to.

Date:

12/16/2003

Time:

01:52 PM

Today

Forgot to post this on Sunday(Dec 14) when this happened so here goes! Well today I learned about plumbing!! Richard was gone with his parents to get the needed stuff for remodeling their kitchen. Well not to long after he left the kitchen sink and bathroom sink stopped up. Of course i have never had to do anything like this because usually a plunger gets it out. That was not to be this time. I called my dad who has natural plumbing abilities. He walked me through taking the peatrap off, putting a snake down there and pin pointing where the clog was. I was about to take off a drain spout in our basement when my hubby and his dad came home. SO they did the rest. Well I did help still but they did most of hte rest. I got to be the lucky one that held the bucket as water from the nasty drain showered me!! They did get it unclogged after an hour or so of more work. Needless to say I didnt get anything else done today and I told RIcahrd the next time he leaves and says that he knows I am going to be busy today but can I do something for him (he is leaving out of town for a few days for work and he needed me to wash some clothers for him as he will be workign all night long in the freezing cold) to not say that again because I wasnt able to get anything else done because I was trying to hard to get it unclogged by myself. In the end I have drano all over which has been a pain on my ecema and allergies (who know a rash could brake out from just breathing it?) and our supplu of tolerex got soaked with draino water. (Jenn W is a dear and is going to send me some so I can make it to when our next order comes in.

Date:

11/19/2003

Time:

11:29 AM

Today

As for Aschdon we have had a rough couple of days but he is on the up swing I believe. Last night his sats were 95 and normal heart rate for him and he slept all night!! It was great for me as I am exhausted. The past couple of days Aschdon while sleeping would dip into the 70's for 02. Talk about scary because this is the first year we have had any kind of equipment to monitor how he is doing so I cant say this is his first real bad dip but it was the first ones that I was able to see and panic about. He was on his bi-pap and 02 bleed in the other day at 3 liters just to keep it above 90. We went back to the doctors on Monday and we got prednisone and our doc ordered pulmizime (haven’t used it yet because the pharmacy had to order it) However the prednisone seems to be doing the trick as he is no longer coughing, no rattles in his chest he is just really really really did I mention really cranky!! I mean he wakes up yelling at every one. Have to tell you all something funny. Yesterday Richard was getting ready for work and Aschdon told him he cant go. Richard explained to him that he has to work and Aschdon hollered back “No you can’t go and leave me with Mommy!!!!" Richard turned to me and asked me what I have been doing to him (joking of course) and I told him that I know Aschdon has it rough, plays the computer, the Nintendo, the play station, watches cartoons. paints, colors he just has it horrible. Well a few minutes later Sahala was getting ready for school and Aschdon started crying again. When Richard asked him what was he wrong he said : You cant go to work and Sahala cant go to school. You guys can’t leave me here with mommy all alone!!!" Talk about making one feel loved but I understand as I am the one that have been coughing him, giving medicine, giving neb treatments for the past two weeks so I am sure he is tired of me. Anyways, I am feeling better, the girls are better in spurts, still sore throats and coughs and stuff but nothing major. Arrayia on Saturday was really odd. She would get lethargic, go to sleep, be ok for a bit and then do the same thing. It was like that all day. When she was awake one time she told me she felt better when she was sleeping. Not sure what was going on. But it looks like we will be well enough to go the farewell party this weekend for my brother in law. Hugs Kenya

---

 

Date:

08/02/2003

Time:

11:56 PM

Today

The fun part of the week though was on Tuesday. We were suppose to be traveling to Denver in order for a sleep study. All was going good when about 2 hours before we had to leave, Aschdon stuck a rock up his nose. So off to the doctors we went were after sitting for 45 minutes the doctor walked in, tried to get it out but ended up pushing it up further so they made an appointment with and ENT which was a good hour away from me. It was either that or let my son have a rock in his nose for a week when the ENT travels to our town.... I don't think so. So I got all of our stuff (oh yes I had to drop my girls off at my in-laws house for them to be taken care of) and off we went and ran into construction which was not there just a couple of days ago. Finally we got there, the doc examined him and we came to the conclusion that Aschdon must have swallowed the rock when it slipped down where the sinuses drain. No problem until I had to explain to Aschdon that the doctor could not go into his stomach and get it out he would have to poop it out. Ugghh what a talk to have with a 4 year old. Off to McDonalds we went as there was still time to make it to Denver for the sleep study so why not right? Wrong!! At the gas station after filling up i went to start the van and it made a horrible sound then died. I tried to restart it and nothing. I opened my car door to find fuel mixed with oil all over the ground under my front tire. I called road side assistance where they would not tow me until the fire department came and gave the all clear that it was safe to move the vehicle. They were really quick and there was no danger so called the road side people again. We ended (aschdon and I) up sitting at the gas station for 3 hours waiting for a tow truck. There were numerous accidents on the highway so we were not priority at that time. By this time it was around 8-9 and we still had to wait for Richard to come and get us. We finally left Cheyenne around 10 clock. Talk about a long day!! Aschdon was wonderful during it all though. No crying, no whining we actually had a really nice time together. Wednesday we found out that the people that had changed our oil when we got the van did not seal the oil filter on right so it blew and when it did it tore our fuel line. It was a simple thing to fix but if the oil filter had not tore the fuel line the engine could have seized on us on the highway. I must say God was watching out for us and I got the big hint for some reason I was not suppose to go to Denver and since the rock up the nose didn't stop me my van did the trick.

Date:

09/05/2003

Time:

06:37 PM

Today

I cant believe I havent updated this yet!! Well Aschdon had surgery on his legs three weeks ago. It was going to be a tendon release surgery but after a talk with the surgery we agreed to an osetodomy (bad speller). They took an inch of bone out of each leg in the upper part of the bone, they reposistioned his pelvis as it was side swooping, and helped his hips back into the sockets where they had a nice tight fit the doctor said. In doing this it also helped relieve the contractors he had in his hips and his knees. As soon as we get the ok from the doctor we will be starting some physical thereapy again with him with me being his main person doing it. He has to be in his stander everyday to help his bones strengthen and to help them grow to the proper shaper or we could be looking at another surgery when he is 8-10 years old. Aschdon is doing great though!! He is getting kinda bored as his sisters get to go to school and he is stuck on the couch with nothing much to do. We try to come up with new things but he misses school. Well that is a short brief update of what has happened surgery wise. (this is from today, I am so proud of myself for getting it done today!)I am so mad I could spit nails!! Today I had called the doctors office to see if Aschdons regular doc would write a script for an x-ray that Aschdons surgeon wants done. They said no problem give them about 20 minutes and it would be up there. Well went up to the hospital and sat for 40 mintues when the nurse in x-ray came out and said that his doctor would not write one with out seeing Aschdon because he doesnt not know if he needs one of not. I told him that the surgeon in Salt Lake requested one and that is how it is. I said since our doc isnt working with us I will just call up to Utah and have his surgeon do it. She siad it isnt that he isnt cooperating it is that he doesnt know if he needs it or not. It is no big deal and we can just come up. I told her on the way out it is a big deal, he just had major surgery and brining him to the hospital where there are lots of germs is a big deal as he is very susecptible to getting sick!! I went to the doctors office and told them that I will not be bringin Aschdon in on Monday because there is no reason for me to have to get the ok from our doctor when his surgeon wants it done. They asked how long had it been, I told htem three weeks today and his surgeon wants the x-rays by the 10th. They said they didnt know what to tell me. I just told them to take him off of the schedule on Monday because there was no way I was going to bring in him to a office with sick people just ot have the doctor say yes or no even though I know good and well he needs one!!! I swear nothing in my life is simple. Oh yes we are also being made to go and see a ped doctor since our town doctor is not one so off goes a new adventure to teachign an other doctor about SMA. I hope and pray they are willing to listen and not just decide that SMA is hopeless. I will be gathering Aschdons records to take with me. One thing it will be good to get another doc on our side for equipment reaons (even though you all know we have no luck getting equipment) UUgghhh

Date:

09/24/2003

Time:

11:10 AM

Today

Aschdon actually loves the wedge. He hates it when I take it off to give him a bath. It has become a wonderful table and it even has a hole in the center so we use it to hold a cup so when ever he is thirsty he has a drink right there. We are patiently waiting to hear from the surgeon as our hospital descided to sit on Aschdons xrays for two weeks and finally sent them when I called and asked where they were. I called the surgeon and the office got them but the surgeon is gone until thursday or Friday. He has been getting upset because the tape/bandage is starting to fall off and he is afraid that all of his blood is going to come out. He actually had a bad dream about this the other day. He told me he dreamed his stitches came out, all of his blood ran out and he died. I think that is a pretty scary dream for a child to have. He said all that was left was his bones. He is doing pretty well considering. I keep him hydrated, coughed, nebtreatments, bi-pap and that was all ok and yesterday we started him on antibiotics because he had a fever and boogers turned green. All in all my house is just a house of sickies right now as we all are sick. the girls had the flu and now they have a cold and well now even I have a cold!! It hit me yesterday like a ton of bricks. I am not sure if I told you all that my dachshund is pregnant again!! I am so excited. Aschdon dreamed she had lots and lots of puppies and he got to snuggle with them and they didnt even lick him. The girls want us to keep one out of this batch and I just might. I dont know yet.

Date:

09/26/2003

Time:

06:54 AM

Today

Hi all, I am writing in request for prayers for Aschdon. He is still doing ok but it looks like his allergy cold has turned into a cold and is moving into his lungs. I have been up with him all night. It doesn’t help everyone else in the family as a cold as well. Aschdon is on antibiotics already so there really isn’t much else we can do for him besides pray that he gets better. On the good note, his surgeon called yesterday and said he thinks Aschdon has healed nicely from the leg surgery and we can start physical therapy again. Yeah!! Until last night we were planning on him going back to school next week but now I am not sure if that is going to happen. Also Sahala was taking the dog for a walk yesterday when a cat crossed their path. Well my little dachshund does not like cats so she tried to take off. Sahala held tight but in the process Mandie had wrapped the leash around her legs and then tried to run again. Any how Sahala took a bad fall. Her nose from the tip to in between her eyes are scrapped up, her forehead has pebble imprints, her front teeth hurt, she scrapped about two inches of skin off of her left wrist (I am really glad she is not left handed), on her left elbow she has a patch of skin missing (oh and when I say scrapped it is more like peeled off) on her left she on skin missing on her wrist and about an inch on her elbow, and she had a bloody nose as well. Please pray that she will heal well and that the kids at school with not be cruel by making fun of her.