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Mommy's Journal
TodayOctober 30, 2002 It has been almost a month since Aschdon has gotten his mic-key button (g-tube/feeding tube). I am still working on tweaking his diet in order to make sure he is getting what he needs through out the night and now through out the day as his oral feedings have gone down considerably. I have been doing alot of research on it, including talking to many different moms to see what they do for their kids. Aschdons diet will be a combo of alot of them with some differences that I have done to it. I still have alot to do with it but since he has started it he has actually gotten stronger I believe. He doesn't have the dark circles underneath his eyes and he is sweating alot less at night. I am looking forward to see what other improvements there will be once I get his diet where I would like it to be. Aschdon hasn't had any real problems with his g-tube as of today. However over the weekend he got a stomach bug and since he had the nissen done he can no longer throw up. It was the scariest thing I have ever had to go through as his body just went floppy as his tummy was trying to throw up. I had no idea what to do and was about to start bawling when I believe mommy instincts kicked in. I grabed the syringe and vented his tummy (or burped him) and that helped a little. As soon as I closed his tube he started wrenching again so I stayed awake beside him holding the syringe in order to lessen the pressure on his tummy. Talk about a long night but it was sure worth it. We also got the bi-pap the other day and Aschdon is on night three of using it. Once he gets to sleep he is fine and rests pretty well, mommy however is another story. I have found myself laying in bed and just watching his sats and his heart rate to make sure he is ok. I just cant get my mind to accept that there is an alarm on there so if anything goes wrong it will wake me up. I sure do hope I get used to it. Mommy
Today:Hi!! I wanted to let you know how Aschdon surgery went. Friday he was suppose to have the surgery at 11 but at 6 in the morning we got a call saying it was cancelled due to a liver that just came in and they had to do the transplant. Ok not the way we wanted to start the day. We were told to call the office and reschedule for the next week. At 9 we called and they said that he was to be gone for the next week so it would be a couple of weeks before they would be able to get us back in. About an hour later we got a call saying that they put him back on the list and to come in at 3. So we went to the zoo to spend the time while we waited. We went to the hospital at three. At that time they bumped us up to 7 o'clock. We came back at 7 and they said that he was still running behind but we just decided to wait in the waiting room. Finally at 9 they took him back for surgery. It was to take only 2 hours so we watched TV while we waited. Three hours later the doc cam in and said it took a little bit longer than normal but there were no problems and that Aschdon was doing fine. He told us that they were going to keep him intubated until he got more alert. Amazingly an hour later they had him on bi-pap and he was doing good. Saturday we got moved from the PICU to the regular floor around 7 o clock and Aschdon didn't have to have any more pain medicine the rest of the time he was in the hospital. The last dose of morphine was aroun10 on Saturday and he had Tylenol around 11 on Sunday and that is it!! I was so amazed. He doesn't like the bi-pap at all but once he gets to sleep it is neat to see how much his chest works instead of his abdomen. We also got trained on how to use the cough assist. (which we are still in the process of getting because the company supplier here doesn't want to order it). They started his feedings sat night at a 5 cc an hour rate and upped it 5 cc's every four hours until he was at 55cc. We noticed that he hasn't sweated since he has been on the night feedings and he also sleeps longer. He has more energy (even though he just had the surgery) and he even tried to roll yesterday!!!! He has not tried to roll for about a year now so it is a big big thing. As of today he acts like nothing has happened and it has been only one week since his surgery. He is eating but having a tough time getting no's on the things he normally eats. He is to be on a very soft diet for two months so this is going to be tough to where we might have to supplement during the day to make sure he is getting what he needs. 03:59 PM TodayNovember 1,2002 Well we didn't have much of a Halloween as Sahala was and still is extremly sick. Arrayia has a really bad cold and it is just too cold to go out side for Aschdon. We just spent a nice quiet night at home hanging out with each other. I sure do hope we get over all the nasty sick bugs pretty soon though as I really dont want to just keep passing them around and around. Aschdon was able to stay on his bi-pap untile 3 this morning so I think he is starting to get used to it. My only concern now is that when we put his pressures 14/2 his oxygen went down into the 80's. As soon as I switched it back to 12/2 his oxygen went right back up to 98-99. I am not sure what this means but hope to figure it out soon. Well I'm off to have what I think will be along weekend of sick kids and a sick mommy (me!!) ugghh. mommy
10:29 AM TodayNovember 6, 2002 Last night when we put Aschdon to bed his sats where 88 we put the bi-pap on it wouldnt go past 94 where normally he is at 98 with it on. I let him have it on for a couple of hours when his heart rate dropped to 50!! and it was staying there. I took the bi-pap off and he went back up to 70 something. At that time his ox was a bit better off bi-pap holding at a good 96. This morning he is really boogery and sounds congested. We coughed it and have had him blow his nose but he is still really stuffed up. I have given him his neb treatment so now his heart rate is up and he is still stuffy and the mucus is a green color. Looks like it is going to be a long day for Aschdon as he hates it when I bug him with all this equipment. But hey what ever I have to do to keep him out of the hospital. mom
04:15 PM TodayNovember 26, 2002 Well I haven't written for a few weeks because Sahala was sick for a week and then Aschdon was sick and then Arrayia was sick and then guess what, I got sick! I am finally feeling back to normal now. The other night Aschdon gave me a scare during the night. Aschdon was hooked up to his pulse ox and I just couldn't sleep. I kept looking at his heart rate and his oxygen when after a few minutes his heart rate started to drop. I have his alarm set at 60 so if it goes below that I will wake up. Well it went below 60 and within seconds it had gone down to 44. I got out of bed and shook him slightly for a few moments until his heart rate went back up. To say the least I didnt get too much sleep that night but he woke up in a good mood. I really wonder why it does that. Last night was horrible, he would not go to sleep for nothing!! Finally at 230am I asked him to please let me get some sleep. He still didnt want to but at least he stopped talking. I believe he fell asleep not too long after he stopped talking. Today Richard, Aschdon and I ate lunch with Arrayia at school. She was so happy to have us there. She showed Aschdon how to cut his turkey (it was really soft meat) and amazingly he did it. He held his fork and his knife and started cutting it the best he good. He didnt eat any of it but at least he participated!! Arrayia and Aschdon get along really well. After lunch they went over to the kitchen area where they played house. I just love my kids!!! mom
06:11 PM TodayDecember 2, 2002 I just had another hit of reality. Sahala checked out a book from the school library. I never really pay attention to the title but I decided to look at this one. It is called Gentle Willow A story for Children About Dying. I know I have never talked to my girls about how serious Aschdon health condition is but I am sure they have heard us at times talking about it. I think it is great that she can take the initiative to learn more about it and maybe come to grips with the reality of her brothers condition. True I know Aschdon my have ten, twenty or more years but God never guaranteed us a long life, just a life to do with as we see fit. It is our choice on how we live it. I guess I am just sad to know that my kids will know the pain of lose in their childhood. They have seen more sorrow and sickness than most kids twice there age. I pray that God gives me the strength and the wisdom to help them grow into understanding, responsible, accepting adults. I am done for now....... Kenya :(
12:15 PM TodayDecember 20, 2002 I just wanted to share a little bit about my husband. Today is our 5th anniversary. Alot of people we know didn't think we would make it this long, as a matter of fact some people didn't come to our wedding because they didn't think it would last. My husband is a wonderful man that has been in my life since I was 11. I met him one night going to the moving here in Wheatland. My sister and I were sitting close to the front of the theatre and Richard and his friends were sitting in front of us. Some thing made me start talking to him and I even invited him to sit next to us. After the movie he gave me his phone number and to call him the next day. And well I did which surprised him but pleasantly. We talked on and off every year and every year that I went to my grandparents in Wheatland I would make a point to call him and go to a movie with him. There was a point were we didn't talk or see each other for 4 years and in that time I had gotten married to my first husband and had a baby. I actually called him before I got married and told him I was pregnant, I think some thing inside me wanted him to give me a reason not to marry my now ex husband but he didn't. Two years later I got a divorce and that summer I went to see my grandparents again with my mom and took a chance and called him. MY luck had it that he was in town for that one day (he was working up on Larmie Peak for the summer so it was really luck or fate that he was home). I told him what had gone on and we decided to go to a movie. I was so nervous as I hadn't seen him in 4 years and I had a kid and didn't know what to think. Of course things can't go perfect, I am allergic to different laundry soaps and my grandma had switched to one that I was allergic to so when I took a shower and dried off I gotten hives all over especially my face. I was terrified for him to see me this way!! The hives disappeared about 5 minutes before he showed up. It was wonderful seeing him again as the attraction was still there (my grandma told me not to come home unless I had an engagement ring on my finger, she always had wanted us to be together). Richard was just as nervous as I was because he was on crutches as he was getting a knee transplant the next month. To me it didn't make a difference and he loved my daughter. Sahala was 2 at the time. Well to make the story a bit shorter we hit it off and got married 6 months later even though his family did not support it and neither did mine. It was a small ceremony in the living room of my mobile home. The song that was playing lasted longer than the whole ceremony!! In these short 5 years together my husband has supported me through so much that has gone on. A hard delivery with Arrayia (she was born black and blue from the bruising that happened because I was in labor for about a month and they would not break my water, I got pulled muscles and scar tissue from that). I got extremely sick with a intestine bug that had me doubled over from pain. The doc explained that this is a rare thing because it is a bug that is in drinking water but only a handful of people get sick from it. I now drink bottled water all the time and never have had another problem. Anyways, with the birth of Aschdon started alot more problems ever imagined. I was on bed rest for 2 months getting steroid shots twice a week and I still had him 7 weeks early. We were lucky in that Aschdon got to come home after one week in the hospital but we had to learn how to maintain his temp for him by using electric blankets. Every thing was going good and then I started working at the post office and working there was the worst thing that has ever happened to my health. My wonderful husband saw me through so much pain and never gave up on me. I used to be so sick and hurting. My skin was bright red, raised up about an inch from where it should be, it hurt to shower, it hurt to have clothes on but it hurt more for the air to touch my skin. He would cry because there was nothing he could do for me but be there as he couldn't even touch me as skin to skin contact about killed me with the pain. He saw me through months of that and then finally when the docs put me on prednisone he was there for me when I had my mood swings. I had such anger in me that I would cry as I never had a temper before and the anger I felt was so over whelming that it was almost uncontrollable. But he was there for me Once I got sort of fixed enough to be able to live life a little bit again is when Aschdon started having his problems, not meeting milestones, getting pneumonia and having to deal with that arrogant doctor of ours. Over a year of fighting to find out what was wrong with his son and yet still meeting criticism from people in my family that he wasn't doing his part and needed to help me out more. I am proud to call Richard my husband. What other 24 year old can go through all of this and still be a descent moral individual. He has raised a daughter that is not his, is raising a son that has a horrible disease, has had to deal with my ex getting out of jail and the worry of me leaving him, having to take care of a wife and worrying that he will be a 30 year old single father of one child (as Sahala is not legally his yet and he is afraid because of my health I won't live to be a ripe old age). He has made it so I dont have to work so I can take care of our son who needs alot of care and for the girls who benefit from having a mom at home. True he is not prefect but who is? I know I am not. Richard trusts me with the care of his children and backs what ever choice I make for their care. That makes me feel good that some one can love me so much to not question my judgment. He is a wonderful husband and a wonderful father and I look forward to the next 50 years with him (at least!!) Happy Anniversary Richard!! You are my heart and my soul until the end of time!! Kenya
07:09 PM TodayWell I brought the kids to the doctor today and it was a really good thing I did. Aschdon is now on Mucamist again, albuterol, an antibiotic plus 02 to add to his bipap while he is sleeping. He has border line broncitus, and extreme ear infections. Arrayia has strep plus the cold so she is on the antibiotic, and the albuterol. The doc said that she is going to be the sickest out of them just by the symptoms. Sahala well she is dehydrated to the point where they said if we do not see an improvement with in two days they want her in the hospital. She is on an antibiotic and a topical ointment for her nausea so we can get some fluid in her. She is really pale and thin well sick looking. They also said that if she doesnt start to get better health wise we are to take her to Cheyenne for a complete work up as there is some thing going on with her. Kenya
TodayI haven't had the chance to update anything lately. Not alot has changed. Richard and I are just nervous as February is always the month Aschdon has the most problems. We are crossing our fingers that because we have his new equipment and his mic-key that we will be able to keep him out of the hospital this year. Every one else is doing great. I got diagnosed wiht fibroids but they wont do anything until they get to be the size of s 12 week pregnacy or I start to not be able to handle the pain by just using over the counter pain relievers. Aaww if it isn't one this isn't another. I found out yesterday that a friend of mine's little boy that has SMA earned his wings on January 24th. He had never really been sick so it was a shock to his family. SMA is a disease that doesn't care how old you are or how strong you are, it takes you when ever. Having heard of Jacob's passing makes me remember that we are not promised a tomorrow, we need to live for today. I am going to try to start doing that better. I know I do to some effect but I know that if I dont hug my kids or tuck them in at night each and every day, I may never get another chance to do it. I am thankful for my kids, my family, my husbands family, my wonderful internet friends and most of all God for helping us through all these tough times and knowing He will help us through all the tough times ahead.
TodayWell February is here and he has started it out with an on and off low grade fever. Last night when I tried to have him on his bi-pap his nose was so stuffy he couldnt breath. This morning he woke up with a weak cough and sniffing boogers. Uggh... I am praying that with out new equipment I can keep this under control. Last year we tried so hard and he ended up with pneumonia twice!! Well have to run as it is time to cough him and do his stretches. Hugs to every one.
TodayAschdon went today for a mental evaluation in order for us to get him on the waiver program. He was scored at a level of a 2 year 3 month old child. I about cried reading this as my son is 3 years and 9 months old. It is one of those catch 22 things as he needed to do bad on it for the waiver but I dont think I was ready for results. I was not prepared for them to say my child is behind by a year and a half. I have thought he is doing great considering at 2 1/2 years old he was only saying 2 word sentences (he had chronic ear infections and fluid until he got tubes in Aug of 2001). I will get the rest of the results in a couple of weeks as he did an IQ test and some other things. To top my day off I got the notes back from the muscle clinc visit that we did in December. Of course there wasnt good news besides he looks healthy and he is a very pleasant boy. They noted that he has contractors starting in his elbow, left one of course he has such problems with the left side of his body for some reason. The degree is only 10 right now. he has 30% contractor on his right knee and 10 on his left. He has some atrophy in his tongue that was noted and significant fasciculation's. They noted that he also has a 2/6 systolic ejection murmur. It has been a much to swallow in one day. As he also got seen by a urologist this morning to find out about his US on his bladder and his kidneys. His bladder is fine and so are his kidneys. However there was on the left side a small difference. Part of the kidney is slightly bigger than the other part. I was told it is nothing to be concerned about right now, we just need to watch and have the ultrasound redone in a year or sooner if we note problems. What a day. I feel like I could sleep for a week after today........
Todaywell Aschdon is offically sick. Well he was technically on Monday but he hasnt gotten any better. We are coughing and doing the treatments and so on and so forth. Each day he is a bit worse. Today the RT came over and showed us how to deep suction into his lungs. Man he hated it but we were able to get some nasty green gunk out. The RT agrees if he keeps going on the down hill rate he will end up back in the hospital soon.Our RT is so awesome. He talked to the people at the paper here and they want to do a story on Aschdon for next weeks paper!! I am excited now I just hope the lady comes through. Anyways please keep Aschdon in your prayers. We have been able to get him to wear the bipap for three hours today and for about 3 hours at night. We are bleeding in oxygen into the bipap so he gets that extra rest. We have a humidifer running where ever he is. He isnt really wanting to eat so thank GOD for the g-tube!!
TodayI have a good update today. Aschdon is better. We didnt end up in the hospital. On thursday his RT came over and deep suctioned his lungs and got alot of the gunk out. As of Friday he hasnt coughed, no fever and is acting great!! All I have to say is Thank you GOD.
TodayThis is a new one for me. Most the time I have to ask for prayers for Aschdon well this time he is the only one besides Richard that isnt sick. Arrayia has been acting kinda cranky and just not her lately well since Friday. Saturday her cheeks were flushed and she just didnt do much. Last night she started coughing this horrible cough. I mean one of the worst coughs I have ever heard a child have. Well i started albuterol treatments with her yesterday becasue I thought it was her asthma acting up. Well we were up most of the night with her coughing and giving treatments. I brought her to the doctor first thing this morning and low and behold she has borderline pnuemonia!!!! The doc said that probably the only thing that has kept her from getting full blown pnuemonia is my smart action with the albuterol. She is now on meds and we have to continue the albuterol treatments every 4 hours and if she doesnt start to improve in a day or two we have to go back to the doctor. Now for Sahala she has been running a fever, no coughing since Thursday. Well Saturday she started with a cough sounds like a cold cough. I brought her in with Arrayia this morning and the doc siad that right now it is still viral but there is a high chance of her getting exactly what Arrayia has. So I have her meds but I am holding off a day or two until I start her on them cause they said that is when she probably will turn the corner to getting really sick. Now of course I dont miss getting sick so I am on meds too as I sound junky and I am coughing up green stuff as well. Good news is though that Aschdon is fine so we are basically having us wear masks on our face and trying to stay away from him as much as possible. Of course lets complicate things as we are expecting a severe snow storm. One that they reported that is the worst they have seen since 1996!!! SO there is a good chance of Aschdon getting sick but at least the doc said if he starts to show symptems all I have to do is call and they will get his meds called in. Kenya
TodayWell I spoke too soon. Last night Aschdon started crying that his stomach was hurting so Richard and I spent an hour venting him getting green mucus plugs out of his his tummy. We even had to change his g-tube because it got clogged to where we couldnt move anything through it. So it going to be a long day as we are snowed in as well and cant get him to the doctors or even to the pharmacy to get meds. So any prayers any one can muster up today I would apprecaite it.
TodayGood News!! Aschdon didnt get this nasty bug as bad as Arrayia and I did. I must say all the extra prayers we have recieved from our new friends from Hugs and Hope has made a difference. God is great and I am thankful for every blessing he has given me!!
TodayWell I suppose I have had an ok day. Yesterday my husband talked me into going back to the doctors. I have been sick for going on three weeks now. At the beginning of it I was on medication and it didn't do anything I was hoping it would just go away but now I am having more and more symptoms so He made me go. Ok any ways I got a shot in the hip of an antibiotic. Aschdon was with me and it was so funny. When I went to pull my pants down a bit so I could a shot he covered his eyes and said "I wont look" and then the nurse told him it was ok and that he could hold my hand and he did. Well after it was done the nurse put a boring Band-Aid on and that was not good enough for Aschdon. He asked the nurse if she had a scooby doo band aid and she told him no. He turned to me and said "It is ok mom we have band aids at home" I was also given some more medicine and some prescription cough medicine. The kids are doing great but I can tell spring fever is starting as they are wild as march hairs. Sorry not much of an update I am just to sore to sit her too long.
TodayLast night me and my husband went to the movies. Aschdon went with us as well and when I was driving he was looking out the window and talking about how he could see himself running past trees and playing and such. Richard said that this is hard. Then he said "little buddy, you wont be able to do that" Aschdon replied with "Yes I can, with these sandals I can run fast and when I am a good boy I will be able to walk" It took everything I had not to cry in front of him. As he gets older I am having a hard time. Yes I know all the lines, like at least he is smart or there are worse things. I know all this but some times it doesn't make things easier. I know I am blessed with him being my son and I have two wonderful daughters and a very loving supportive husband. I am looking forward to the conferee but I am also dreading it. I am not sure if I am ready to see so many kids and families with SMA. I know it has been 2 years now since we got the dx and living out here in the sticks as isolated us from seeing any one else but I don't know if the reality of this is something I am prepared for. I am one that don't like to show my emotions in front of others because that is a sign of weakness. I have always been the strong one in my family and even now I am told I am so strong but I dont feel like it. I really dont. I feel like a whiner, some one that complains because of all the stuff that goes wrong or the bad luck they are dealt.
TodayThis is from last week when Aschdon got put in the hospital the last weekend in May. Well to summerize things when I took him up to the hospital yesterday they did blood work and it came back all screwed up. His glucose level was only 35 his CO2 was 9 his white blood count is around 22000 and he had a temp of 102. It also showed that there might be an infection in the blood but we are not sure. The acid level in his blood is really high too. Any ways we got life flighted to Denver last night where they did more tests and found that even though he is severly constipated his bladder is alarmingly large. His colon is enlarged a bit and his intestines are dialated. They had to give him sugar water until this morning for his sugars level to stablize. When they did the CAT scan they had to shoot dye in his butt so that helped clear him out some. Unfortunatly all of this does not explain why he is so sick. We did a swap for strep and it came back positve as well. His oxygen is good but his heart rate is running in the 160's So far they have said it is not menagitus or pneumonia. They are trying rule out things so they can figure out why he is so sick. He is doing better today as yesterday he couldnt even sit up at all, hold his head if we sat him up or nothing. He was very lathargic. Today he is doing better. He is eating and being able to play. He is stil running a fever and a high heart rate though. They are going to let me mix the vivonex how I need it mixed and they are going to be using the bi-pap but not as of yet because he has a very sore abdomen and his co2 is way to low. I think that is about it.
TodayThis is the update form 5-27-03 Aschdon is doing much better today. He is off the IV fluids and the cathader is out. The left the IV ports just in case we need them again. Our goal today is to make sure he can urinate on his own (which we are pretty sure he will do because the doc said they belive the problem was that he was so dehydrated and then he got bombarded with fluid and with his weak muscles his body just couldnt do what it was suppose to do. How ever they still have no idea what caused him to be so ill. They are sending in a medobolic team to reaserch this. They have taken blood for some tests and we are going to be talking with them today. We wont get the results back for awhile but they said they can send it to his regular doc. His heart rate is still a bit elevated but nothing like it was. He is eating good but the only thing today is that he is a bit on the cranky side so it shows he is not better all the way yet. We have no idea when we will be leaving here. Hopefully with in the next few days though.
TodayThis update is in the wrong order but at least I finally got it in here!! :) A big thank you Laura for forwarding my messages. I apprecaote it. Well Aschdon is doing a bit better. He is no longer constipated and he still has the cathader in. I knew every one would mention the constipation issue and I really wish that was the problem. His heart rate is still high and still has a slight fever now and then. He does have strep so that is part of the problem. However they have no isolated why he is having a problem keeping his glucose levels up. They have a medabolic team coming in some time tomorrow to look Aschdon over top to bottom as they think that is the issue. He is eating and playing and such but he is not back to normal. We will be here for a few days at least as I really dont want to leave until they know what is wrong. I know alof of you guys are germ phobic and would love to get out of the hospital as soon as you could but me and my husband feel we need to be here as they problems he is having arenot SMA related. The doctor is very concerned about his weight as he said Aschdon is malnurished and that he should be taken off of vivonex because obviously that is not working (and well I agree in a sense because even though he has gained some strenght with it he has not gained weight) It is alot of info to absorb. I know I need to talk to Mary B about the diet as she has a type 2 kid and would be able to help me out a bit more than Liz. (sorry Liz, you even told me yourself that she would be the better one to talk to since her daughter is a type two)
Todayhello all. Just wanted to let you all know that Aschdon is doing good. We never did find out what he got so sick with but thank God he is better now. It was a really close call to losing our little boy on Memorial non-theless. We are about to leave for DC for the FSMA conference. Wednesday we are going to Denver and we are going to spend the whole day at the zoo. The zoo is 80 acres so we will have plenty to see. Thursday morning we fly out and our plane stops in Chicago and then we go to DC from there. I am looking forward to site seeing. Richard has been there before but it will be nice to see stuff together and then of course Aschdon will be able to see it too and you guessed it I am taking lots of film. There are going to be three days of classes for me and Richard and Aschdon will be able to meet lots of kids like him, of course of differnt strengths but all with SMA. I will update when we get back next week. Wish us luck!!!
TodayI just wanted to share with everyone that Aschdon will be having his tendon release surgery done in Salt Lake in October. We went to Denver on Monday to talk to the surgeon about doing it there but his whole attitude make know that it was the wrong place to have it done. Good news is that they took x-rays and he still has no scoliosis. Well in the talk with the doctor I let him know that this was not something I just decided to do out of the blue. We have gone through and looked at the positives and the negative aspects and what could go wrong and so forth. Well the surgeon told me that I really need to rethink it because there is a high chance he would never wake up. Or that they would need to trach him. Right when he said that I told him that Aschdon has had g-tube surgery and his last pulmonary function test was excellent. He said that because of his SMA that he would most likely go home trached and that I need to understand this is a progressive disease and he is only going to get weaker. Plus there is not that much benefit to standing so the surgery is not worth it. On top of that he was telling me that in two years (5 if we were lucky) the tendons would go right back to where they were before and what would be the point. I told him the point was that he would have the two years to stand and that all in it self was worth it. Now don't get me wrong he is a great ped. surgeon just one of those docs that not up to date on the SMA stuff. Before we left he just asked us to talk it over with the muscle clinic people (we are seeing them next Friday) and see what they say and if they say to go ahead he would be more than happy to do it. However from what it sounded like he wasn't going to do much at all because he wasn't going to touch the hips at all and only a little on the leg so I don't think it would be worth it to go to him any ways. I called Adam (Dr. Swoboda's nurse) and told him what had gone on and he said we will defiantly do it in Salt Lake and he said if Aschdon does have as good as he did with his g-tube surgery then we should have no worries. Of course he wanted me to know that there are chance things could go wrong or something like that but just like with every one and every surgery there is a risk. So to make a long story short, he will be getting the surgery done in Salt Lake in October and we are going to fit it in with our next visit for the SMA study.
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