Journal for 2008
30, 2008: Hi
all. Our Christmas was fun, but of course there is always the aftermath--where
did all of this stuff come from, and where the heck should I put it??? At least
Brian is home, and the kids are having fun. Harrison got so many new books and
magazines, so he's been holed up in his room reading like crazy. If he's not
doing that, then it's (of course) playtime with the garbage trucks. Autumn got
some wonderful minature playsets: ponies, Littlest Pet Shop, Dora Explorer, that
she is having fun with. I had to go to Target today and get some more see
through plastic bins to corral all of the stuff. Aaron got some goodies too, and
is constantly back and forth between his new toys and whatever Autumn drops off
of her stander tray or the kitchen table. I'm doing my best to keep all of the
pieces of the playsets together, but it's been a struggle. Sigh...
Today we had the BEST TIME. Harrison has gone with his Grandpa Pete to a garbage truck dispatch center not far from our house. Today, Brian and I took all of the kiddos to Waste Management, just to meet these new friends that Harrison talks about, and to let them know that Harrison really does have parents! LOL. Harrison saw Sheri, one of the main dispatchers, who was more than willing to let us look around, talk to people who were working, and see some garbage trucks that were being repaired. Before Christmas last week, Harrison and Pete went to the dispatch center to deliver a gift for Sheri that Harrison had made (and wrapped!). It was a paper picture frame with a snapshot of Harrison and a garbage truck in the center. Around the border Harrison had written several sentiments including 'I love WM'. It was a hit in the office, to say the least. When we were visiting today, SEVERAL drivers stopped by the office after seeing us and remarked that Harrison was the boy who made that wonderful gift. One of the drivers even offered to bring the truck around and give Harrison a ride around the parking lot in a front-loader garbage truck! Harrison was even able to see how a dumpster was picked up. The guy was a bit pressed for time, but Sheri told us to come back soon so Autumn would be able to ride. (Thankfully, she didn't ask this time--it was pretty chilly out, and would take more than Brian and I to lift her into that high truck!)
Anyway, it was so much fun. The kids had a great time, and I expect that tomorrow, Autumn's miniatures will be set aside so that she and Harrison will get some garbage truck playtime in.
Have a happy and safe 2009. Keep your fingers crossed--Autumn's slight nagging cough returned after disappearing for a few days, Harrison was coughing yesterday, and Aaron has touch-and-go tummy issues. Never a dull moment, but all very manageable.
26, 2008: Hi
all. I just want wish everyone a Merry Christmas and Happy New Year. I sit here
and think of everything that I am thankful for--most of all my husband, my kids,
my family, my friends. This year has gone by so fast, and had has been an
emotional roller coaster. I guess SMA or anything similar will do that to you.
Still, I marvel at the strength of my Autumn. Three days ago, she was coughing, acting sickie, and again I was afraid that this would be the time when we wouldn't catch things fast enough, and she would have to go into the hospital. Even for simple colds I have been warned--the pediatrician, neurologist, pulmonary doc, everyone told me to be ever so careful regarding her care anytime she even starts to seem a bit 'off'. I've seen it happen to others, and frankly it scares the crap out of me to think that we're in the exact same boat. It's a side of me I don't really recognize, as I have never one to be paranoid about my kid catching a cold. It's just the nature of things, really.
Well, Brian and I have been doing Albuterol nebulizer treatments twice a day, lots and lots of extra coughing, hand washing, extra sleep, etc. and Autumn is JUST...FINE--no antibiotics or even over-the-counter medicine!!! She seems to cough a bit after getting up from sleeping, but we use the machine, and after a few minutes, she is fine. It doesn't seem like an accomplishment, but we were told that at a minimum, kids with SMA II should expect hospitalizations at least 2-3 times a year for bronchitis/pneumonia, stuff like that.
So zip, zero, zilch. I'm so happy my daughter is feisty and has such a strong will, just like me. I'm glad we chose to get a g-tube for her, I'm so glad that we have such a great network of other parents, doctors, and people who are helpful and supportive.
I'm hoping that next year things will get even better. I worry about Brian's job, as he's an auto guy in Michigan, and things aren't very good here in that department, to say the least. I want Harrison to continue to grow up to be happy, creative, and interesting individual. I want Aaron to continue to look at the world with wonder and love, just as he now does. Most of all, I want my Autumn to have the same opportunities that everyone else does, and to continue to stay strong, so that when a cure for SMA comes, she'll be in line for it. I want my husband to know how wonderful he is, and how much I love being married to him, and how much I appreciate him as a father. For me, I want to keep up the fight--to get what I need for my kids, to stay strong when I need to, and to advocate and help others who are going through the same thing.
Life is GOOD, and I hope that everyone who reads this feels the same way. I love you all, and wish you a very Merry Christmas and Happy New Year.
Peace and love,
P.S. Miss Mary B.--thank you so much for your interest and best wishes. I'm so grateful for your friendship, and hope that someday soon I'll be able to meet you and give you a hug. Love to you and your family as well, and I hope that your daughter finds strength too.
22, 2008: Two
days before Christmas, and Autumn is really fighting something. She started
coughing yesterday, but just a little bit. Today, she has coughed pretty much
all day, but doesn't seem bothered by it, is eating/drinking like she normally
does, and isn't running a fever. I've done 5 cough treatments today, and
albuterol nebulizer treatments twice, and hope that it's enough to help her
fight this off. I don't want to have to make a doctor's run on Christmas Eve or
Christmas day, and I don't think she needs to go in tomorrow. She's only had
antibiotics once back in June, but the last time she had the sickies, I spent
the night on the floor of her room, giving her coughs every 2-3 hours. Still,
she was none worse for the wear after a day or so, no medication, and didn't
have to go into the hospital, which is always our worst fear. Still, I DO NOT
want her to get sick, and have to stay home on Christmas, doing treatments. SMA
is good for stuff like that, as I'm finding out talking to other families. Our
bathroom is overrun by various types and sizes of tubing for the different
pieces of equipment, and it takes forever to put her to bed and get her up. So
many things to hook up, plug in, wash out, change, fill up, etc. It sucks.
Still, we're glad to have the tubie, as when she does get sick, nutrition and
hydration won't be an issue.
Anyway, keep your fingers crossed and enjoy the pictures!
6, 2008: Hi
everyone, the kids are in bed, and I've been anxious to share some more
First off, Harrison was 'Student of the Month' for his third grade class. We're so proud of him, especially since every year, before January, he has been Student of the Month--even in kindergarten. With over 25 kids in his class every year, Brian and I are so proud of him. He was recognized at school by the principal, during assembly, and given a certificate. Unfortunately, the person writing the certificate, spelled his name 'Harrisson', which he wasn't happy about. He told his teacher, and was assured that a new one will be printed.
Before Harrison began school, Brian & I considered starting him later, as his birthday is Nov. 10, and the cutoff in Michigan is Dec. 1. Well, that kid loves school, and is doing so well. On his last report card, he got straight As, with an A- in reading. His school emphasizes morals and behavior as well, but all of his conduct grades were perfect. He goes to a charter school in our neigborhood (and walks with his best friend--great for those tired mommy mornings!) and honestly, I don't think we could buy a better education for him at this point.
Today was MDA's holiday party. I can't begin to say how much fun we had. It was at a bowling alley, and one of my MDA friends told me prior that over 300+ RSVPd. There were a ton of people, but there was plenty to do, and more than enough room to move around.
When we got in, the kids were ushered into a room where there were just toys. They were allowed to choose anything that they wanted--but without parent help or suggestion. Brian & I had to wait outside. Autumn and Harrison even chose something for Aaron. The gifts were put in a bag, and then given to Santa. When our number was called, we took the kids to go see Santa, where they received their presents. None of the kids have ever been afraid of Santa, and Aaron loved to give the high-fives.
Harrison and Autumn got their balls and were bowling on the lanes. Another family was sharing the lanes with us, and their daughter, Elyse, bowled with us. Elyse also has a type of muscular dystrophy (not SMA), and is 2 1/2. She had never been bowling before, but she and Autumn had a great time. They met at the MDA pre-telethon picnic in the summer, and Autumn (social butterfly that she is) was so happy to see a friend again. Every chance she got, she tried to hold Elyse's hand and park Big Blue next to her.
At the next table over was another friend that we met at MDA clinic--Diala, David, and their son Lucas, who is 5 years old and has SMA. Autumn was soooo happy to see another friend, although it had been since early spring that she had seen Lucas. Lucas was in a push stroller, and right away Autumn noticed that he had a bag hung from one of the handles with a tube coming from the bag. Autumn asked, 'Does Lucas have a tubie?' I told her that he did, and she smiled the biggest smile and replied, 'Yeah--like ME!' Lucas had never bowled before, and he had a good time too. Autumn was just as taken with Lucas as she was with Elyse, and was so happy that all of our bowling lanes were next to each other! Harrison, being the good big brother that he is, helped Elyse and Autumn by setting the bowling balls on the ramp each time, and letting them know when it was there turn.
After bowling and some pizza, we took the kids into one of the other rooms where they had crafts, scrapbooking, and decorating graham-cracker houses. Harrison did all of the crafts, and Autumn and Elyse kept busy sticking candy on their houses. I ran into Diala and asked if Lucas would like to come into the other room, and she said that she could not get him away from bowling--he pitched a fit trying to see Santa, who, as it turns out, was just not as fun as bowling.
Gosh, I love these events. The kids had a blast, and even Aaron who was Mr. Fussy for the first little bit enjoyed all of the attention. Brian and I do take our kids out, but there are not very many events where kids like Autumn are the norm, and while she doesn't seem to notice or be bothered by her differences, I love to have her interact with other kids like her. Plus, us parents tend to also compare notes and swap stories, although today was so much more about fun. Everytime I see my kids doing things altogether, normal things, behaving, and enjoying themselves, it makes me so happy. I know it bears repeating, but I can't say enough about our Detroit area MDA friends. Not only do we get top-notch care at clinic, referrals to the best doctors, money pumped into the system for research to cure these horrible diseases, but they do throw great parties for the kids and families.
On May 3, we're participating in Stride & Ride, a HUGE fundraiser for MDA. This one is probably the biggest in the area, and I'm working on a few things to try to help raise money for them. I'll let you know what transpires and when we'll start the actual fund-raising, and I know that money is so tight this year, but if you can, please help us to give just a little bit back to the organization. I can't imagine where we'd be without them.
Wendy & co.
3, 2008: Hi
all. Today Aaron had a well-baby checkup with our favorite pediatrician. He's
growing like a weed--25 pounds, 5 ounces (50th percentile) and 33 3/4 inches
long (95th percentile). Dr. Dagnew was very happy that he is doing all of the
baby things that a 16 month-old should be doing, and was impressed that he is
still nursing. I took Autumn along with me, since Dr. Dagnew had not seen her
since June, which was before she had the g-tube placed. She was so glad that we
made the decisions that we did, and raved at how good Autumn looked. She asked
about Harrison too, and I told her that he essential was asymptomatic regarding
his asthma, and was only taking 1 puff of Flovent in the morning and at night.
He has not needed any Albuterol treatments for months, despite it being allergy
season, and has not had a serious cold in who knows how long. She said how
amazing it was that the kids have not been sick, since so many things are going
around (as always for this time of year), and even with Autumn, not being sick
is not the norm. Dr. Dagnew treats an older girl (age 14) with SMA when her
primary pediatrician is not able to see her, and said that when she was younger,
she was in every 2-3 months for bronchitis or pneumonia. Guess our crazy
hand-washing with Harrison and the CoughAssist is paying off!
Still--I live in fear of the day that an illness will rob Autumn of what little strength that she has, and has to fight to get it back. We aren't keeping her in a bubble, but making sure that she's not around anyone who is sick/coughing, and try as best we can to wipe off tables, keep her away from toys in waiting rooms, etc., when we are out.
Every time I put Autumn in her stander, I have been trying to get her to stand up again like she did before, holding on to either the couch, the coffee table, or my hands. It's just not working, and it breaks my heart. Autumn's hips shift from side to side, she struggles to maintain balance while holding up her head, or her arms can't support her weight. Still, she did it before, and Brian & I will keep working with her. At least she can comfortably stand in the standing frame--most of the time for about 2 hours before she gets bored and asks to come out. I'm hoping like crazy that she won't lose that ability, since I credit standing up for helping to prevent so many other problems common to kids with SMA. In January when we go to MDA, we'll try to see if we can get a power stander so that she is able to move around. One of our friends had one for her son who has a different type of muscular dystrophy, and Autumn really REALLY wants one after seeing that. I know that we'll probably have to fight for it, and it will be months and months before we even know if we're able to receive one, but anything worth having is worth fighting for.
I'll see if I can get more Santa pictures up of the kiddos soon. They went to one of our local malls were a huge snow globe was set up, and had a field day with that. Paper snowflakes were all over Harrison's clothes, and I'm still picking them out of Autumn's powerchair.
Saturday is the annual MDA holiday party. The kids are really looking forward to it, and I always am so happy to see all of our friends.
20, 2008: Hi
all. Hope the pictures aren't too big (still figuring out the camera), but I had
to send these along.
My Autumn is 3 1/2, and has never stood up by herself. Her little body is like spaghetti, and she is unable to bear any weight at all on her legs without the help of a standing frame supporting her back, knee immobilizers, and leg braces. A few times she was able to stand on the couch with her Benik vest (soft neoprene back brace) on, holding on to me for her dear life.
Tonight before I put her in her stander, she stood up on the couch by herself, with her leg braces and knee immobilizers, only holding on to my hands. She was able to keep her trunk steady--no wobbling!!!! Well, I hugged her and tried not to cry--I try not to cry in front of the kids, lest they think that they are upsetting me.
After 1 1/2 hours in the stander, I took her out, and Autumn asked me if she could stand again 'by meself'. I got my camera, and asked her if she wanted to stand on the floor, holding on to the couch. She was sooooo happy, and I got some great pictures. I called Harrison over--Mr. Bookworm was reading again--and he was shocked. ('Whoa mom, look at that!!!') He stood next to her and told her that if she could stand, maybe someday she could even walk.
Autumn's physical therapist said that she noticed how much that Autumn's strength has increased since we had the tube placed, and today I'm a believer. I have never seen my beautiful daughter do something like this--her body just doesn't cooperate. While she was standing, she said, 'Mommy, even babies stand!', but at the same time seemed so proud of herself.
It's bittersweet though. More than ever I'm convinced that all of the therapies, the tubie, EVERYTHING that we are doing is working. I'm proud of my little girl, but more than ever, I want a cure for SMA.
November 1, 2008: Sorry that I haven't sent any more updates/pictures recently. Our computer did a major fart-out on us, and (not supposed to) I'm using Brian's until I can get it working again.
I'll start with the most exciting news. Today I got the MDA FYI paper for our area, which goes out to MDA families, and lo and behold, one of my emails that I sent to my MDA friends after the telethon was right there, in the middle. There was a picture of our family, and one of Autumn and Mikah sitting in their powerchairs holding hands. I was floored. I don't remember the date I sent it out, but it was after we did our 3rd telethon appearance. Wow. Autumn's CaringBridge website address was also listed, so I'll be checking it for new hits when I can. I'm SO flattered that they chose to use my letter in their publication, and I can't wait to see those people and hug them again. My Autumn's picture was in FYI three times, and I am so happy that everyone can see how happy, healthy, and beautiful she is.
In the spring, we're doing a huge fundraiser for MDA, Stride & Ride, at Somerset Collection in Troy, MI. If anyone is interested, we'd love to have you join us in fundraising, or if you'd like to donate to this wonderful organization, I'll send information as I get it. I'll never be able to pay MDA back for what they have done and are continuing to do, but I will try to help out as best I can, and talk to other families who are in the same position that we are.
The kids had a ball trick-or-treating yesterday. It was quite warm, and thankfully the kids didn't need coats on over their costumes. Aaron was a pumpkin, Autumn was a bee, and Harrison was a (surprise) garbage man, complete with a Waste Management hat and a metal can with which to collect his candy. That can is filled to the top, and I hope that the kids eat it, so I don't have too! Goodness knows they don't have to watch their waistlines!
my computer will be up & running again soon. I have more pictures that I
can't wait to send!
October 21, 2008: Hi everyone. Yesterday Autumn went to see Dr. Ehrlich for a follow-up appointment just to see how the g-tube site is healing. Last week, I cancelled the Tuesday appointment to check on the icky skin growing under the plastic disk, and instead have been treating it at home with tea tree oil and antibacterial ointment. Well, last Thursday, the visiting nurse remarked at how much better it looked since she came the week before, and even took notes for other parents regarding what we were doing. Autumn was weighed, and tips the scales at 27 pounds even, up from 26.1 the week before. I told the nurse about the throw ups, and said that she probably would have weighed half a pound more if that didn't happen!
...so when we went in yesterday, the nurse at U of M took a look at the tubie site, and said not to worrry at all about the granular tissue--she said that it happens all the time, and is more common if an individual has fair or sensitive skin like Autumn does. She didn't know about tea tree oil either, but said that if it works it is probably a better alternative to silver nitrate. She did give me a dozen silver nitrate sticks to use (like long q-tips that you rub on the tissue) and said that if the site gets any worse, use them once or twice a week at most. Dr. Ehrlich came in and looked at the tube too, and said that it was healing nicely, and that we needed to come back on November 21 to have a button put in. Yay!!!! The button looks like one of those little plastic plugs on an inflatable toy, and that will certainly be much easier than taping down the tail of the tube, which we have had to do since we got it. I know Autumn will be happy about that too, since her skin is starting to become very irritated under the tape, and there are only so many places where it can be taped down.
Otherwise, tube feeding is going extremely well. I have another SMA parent working on a diet for Autumn. She sent me this spreadsheet today of what she is getting and what she needs. I'm in the process of tweaking things a bit, and gradually adding supplements that aren't in the formula. Autumn doesn't mind being hooked up at night and at naps for feedings, and rather enjoys being 'burped' through her tube. (Take a syringe without a plunger, put it in the tube, and the gas makes very loud bubbling noises as it comes out--Autumn finds this rather hilarious.)
later. Aaron decided he wants to get up NOW, and it's bowling day today.
October 15, 2008: Hi guys. I think this has probably been the 'ickiest' few days that we had in a long time! Ready for this???
On Sunday all of the kids were um...not on their best behavior to say the least. We went out to lunch (they were actually very good at the restaurant) and came home when it was naptime for Autumn and Aaron. Brian went out to the other house to do some work, and then came home to cut the grass. Lucky me, I had all of the kids, who were constantly whiny and demanding. Well, in the middle of all this, Aaron was standing on the rug in our living room, and just started howling and fussing. I was just about to lose it when I looked down and realized that he had just tossed his cookies--know what I mean??? Poor thing. I got him cleaned up, threw his clothes in the wash, and put him in the feeding table while I tried to figure out how to get baby ickies out of a SHAGGY rug. Not the easiest thing to do, and believe me, it took awhile with both the vacuum cleaner and the carpet steamer. I had to do a second once-over on Monday too since it still was stinky. Gone now, though...
Autumn's skin under her tubie is a bit better--it depuffed a bit and isn't as bloody. I've been using tea tree oil soaked gauze pads in combination with Neosporin, and it seems to be working. Yesterday we were supposed to go to U of M to have it looked at and to be shown how to use silver nitrate, but Monday I called an cancelled the appointment. We were having someone come out to blow out the sprinkler system, and well--sometime you just can't handle any...more...doctor's...appointments.
Good thing I did, too.
Monday night I pureed some peas and put them in Autumn's bag for the tube feeding. She was fine from 7:30 until about 1 in the morning, and then the alarm went off. Brian & I restarted the pump, and then the alarm went off again in short order. Ugggghhh! We tried to clean out the peas, but ended up just tossing the bag. Guess tubies don't like peas unless they're pureed in a good food processor, and not with an immersion blender.
On Tuesday morning, Autumn and Harrison got up for school as usual. Autumn was on the potty and said that she had to throw up. Well, Brian and I figured that it was from gas due to the feeding mishap that night. She threw up again at breakfast, but otherwise was feeling okay, no temperature, acting perky, etc., so we sent her to school.
Now in the midst of all this, I didn't feel well either--I'll spare you the details, but Brian had to take care of Aaron while I went back to bed, only to get up and run to the bathroom. Not fun.
Brian got called to pick up Autumn from school, as she threw up twice. (Note to self--never send barfing kid to school. I should have kept her home in the first place.) Autumn threw up once in the van, and once in her Tumbleforms seat at the table. Now there is a pile of icky kid clothes on the washing machine, a preschooler who is in dire need of a shower, a baby clamoring for attention, and one sick mom. Not a good day.
Brian gave Autumn a shower and put her to bed. We gave her Pedialyte through the tube instead of food, and kept our fingers crossed. Brian let me go back to bed and bounced between trying to do computer work and take care of Aaron. Wonderful husband!!!! Harrison went bowling with his friend, and the rest of us all stayed home.
Amazingly, Autumn didn't throw up at all after she got up from her nap, nor did she today! Last night we gave her 'regular' feeds in her tubie, but added more water. Today she seems just fine. :) I'm much better too--still not as strong as I should be, but at least the sickies seem to be on their way out. Aaron's okay, and Harrison is fine too. He had a half day today, and is in his room happily reading American Waste Digest, a trade magazine for the garbage truck industry.
Monday we're going to see Dr. Ehrlich (surgeon) for the tubie. I'm hoping the site looks better, but I'll ask for some silver nitrate just in case. I don't want to have to drive another 40 minutes or so out to U of M just for that if we're there anyway.
that's it. Naptime now, and Harrison has some new garbage truck websites to
October 9, 2008: Hi everyone. Today Autumn had a visit from the home care nurses just to check and see how she was doing. Autumn was weighed at 26.1 pounds (26.12 last week) and was so friendly and happy.
Here's the icky part.
A few days ago, I noticed that underneath the plastic disk that holds the tube in place, it was red and puffy. Yesterday I was so concerned at how gross-looking it was that I called the surgical nurses. They said that it probably was granular tissue, which is the body's response to irritation. It looks like a red puffy mushroom coming out of a slit--but so much more disgusting. It doesn't seem to bother Autumn any, but when I have to change the gauze that surrounds the tubie, it is like a tap opens and it is just a nasty, bloody mess. The nurse I talked to said that it didn't sound like it was infected (it doesn't stink and isn't oozing green--sorry), but to protect it with a barrier cream or Neosporin. Today the nurse looked at it, and said that we should get Autumn in ASAP so that we can get a prescription for silver nitrate which will help. Of course Autumn will be going to the pulmonologist tomorrow at Children's Hospital in Detroit, which is in the opposite direction from U of M, so we're planning on taking her in on Monday. Autumn has an appointment with the surgeon on Oct. 20, but I said (and the nurse agreed) that we shouldn't wait that long.
So in the meantime we need to make sure that the tube is taped down (which it is) so it doesn't move, and when we give her a shower try to get a washcloth and gently rub at the tissue to help loosen it a bit and slough off the dead skin. Icky. I don't have an iron stomach, and hate stuff like this. It helps just a bit that it is my kid, but still... I'm glad that she has some black shirts.
Tomorrow Dr. Toder will go over the results of Autumn's sleep study. I got the results back, and on the top of the paper next to her height and weight, it says that her body mass index is 11. Yikes. That is waaaaay too low, so I'm really glad that we got the tubie. Anyway, much of the information on the paper I don't know how to interpret, but her oxygen levels during sleep were above 93. She didn't have any episodes of sleep apnea, or issues with increased or decreased heartrate. I'm not sure what the normal CO2 levels should be, and her 'sleep deficiency is decreased at 88.1%', so I'll ask the doctor to translate that. She did have an almost constant cough before and after the study, so we'll see how that affected the results.
Autumn is having hip issues too, but hopefully if we get THE CORRECT PART FOR THE STANDER THAT WE ORDERED 10 MONTHS AGO!!!! that will be corrected. Yesterday, I asked Miss Barb (physical therapist) to check the fit of Autumn's leg braces, as I noticed that her feet turned in when she was in her standing frame. There weren't any red marks on her feet when I took the braces off, and Miss Barb told me that the rotation of her feet was due to her hips not being positioned properly in the stander. There isn't much that can be done standing up regarding hip position, but if we HAD the growth kit for the knees, they would be aligned correctly, and thus it would be better for her hips. Grrrr... Barb is calling our Binson's guy to see if there are any parts for the stander that we can use in the interim before we get a new one. I really don't want to order a new part and then be refused by the almighty insurance company when it comes time to get a new stander, which will hopefully be in a few months.
It never calms down, does it? I don't know what I'd do if I had to work a full-time job. I would have an ulcer, and Brian would have to put me in a padded room when I got home.
hope you enjoyed the pictures, and I'll be sending more when I get them!
October 1, 2008: Hi everyone! Today Autumn went to see a new doctor--a pediatric orthopedic surgeon, Dr. Mendelow. We were referred to him by both our pediatrician and neurologist, as well as several other parents who have children with SMA. This guy is WONDERFUL. He has the best bedside manner, and really seems to understand kiddos with SMA and their families.
Autumn went in for an initial visit just to get baseline spinal x-rays. Kids with SMA have problems with brittle bones and scoliosis due to not being able to stand on their own, and we just want to keep on top of things. Eventually, all kids with type II SMA need to have some sort of surgery for scoliosis, and we are doing the best we can to try to hold that off. A spinal fusion is an option for older individuals or kids who have finished most of their growing. A fusion only needs to be done once, but the spine won't grow anymore once it's fused. Growth rods buy more time, but need to be extended as a child grows, sometimes as often as every nine months. After the initial surgery, the 'growing' of the rods isn't as traumatic, but it is still surgery, with all of the anesthesia risks involved. I'm hoping that we can buy enough time for Autumn and hold off until she can get a full fusion, but only time will tell...
Anyway, according to Dr. Mendelow, Autumn's x-rays looked very good. She has a slight front-to-back curve, and her overall curve was 14-17 degrees. Of course I don't have anything to compare that to, but Dr. Mendelow said that curves can vary so much from child to child, even those with similar types of SMA. He will see Autumn again in April and do more x-rays so that he can determine how the curve is progressing.
He also asked me if I knew that her hips were partially dislocated when she is lying down or sitting. I said that we were told that 2 years ago when she fractured her leg, and that Brian and I were told to have her hips pinned in place, but decided against that. He said that we had indeed made a good choice (!!!!!) and that we would have put Autumn through surgery with little or no benefit in the long run.
...I remember being 9 months pregnant with Aaron, sitting in my midwife's office crying my eyes out, knowing that we had to make the leg and hip-pinning decision ASAP. Not one of my best moments, and I am so glad that we did make the right choice.
Autumn was so agreeable during this visit, so I know that she was comfortable with the doctor too. He praised us for the decision to have the g-tube done, and was amazed that she had surgery only 11 days ago! We told him about Autumn's physical therapy, her standing frame, wearing her little AFOs, different types of stretching we do, etc. He said that we are on par with the calcium supplements (300 mg calcium citrate 2 times a day in the tubie), and to increase vitamin D just a bit. Otherwise, I was told that Autumn is in GREAT SHAPE and to keep doing what we are doing with therapy. I was so happy. We also talked about the other doctors that Autumn sees, and he knows every single one of them except for Dr. Ehrlich the surgeon. He used to work with the pulmonary doctor at Children's, and said he gets referrals from Dr. Dagnew all of the time. Guess we're in the right place once again!
Through MDA I've been put in touch with another SMA family who have a daughter that is 18 months old. The father told me that Maria (their baby) was diagnosed at 6 months, and the doctors gave her 2 years to live--and that they needed to have a trach tube done if she wanted to live that long. Maria is 18 months old now, and is cute as a button. It makes me sick that doctors are so out of touch with the latest research (granted, I know that you can't research EVERYTHING, but still...) and rather than admit that there are things they don't know, and/or put them in touch with those who do, they give them these outdated statistics. My MDA friend Julie told me that they have had a really hard time reaching out, so I was really glad that she put me in touch with this family. Suzanne and others did the same thing for me, and at least in the beginning, having a family to help pull you up and let you know that things can be okay made all of the difference.
year ago the thought of something like g-tube would have sent me over the edge,
and now we are strong enough to make these tough decisions. I've found that if
you bury your head in the sand, sooner or later someone will come along and kick
you in the a**. Especially with SMA, sometimes time is not on your side, and you
can't afford to live in denial.
Thanks for reading.
September 29, 2008: Hi everyone. I just wanted to send out a quick update email and let everyone know how things are going at home with Autumn's new tubie.
Autumn was discharged a week ago Saturday, and on Sunday two visiting nurses came over and showed us how to hook up the feeding pump and feed Autumn (she 'eats' during naps and bedtime for now). All of our supplies were sent home with us from the hospital, and we had everything that we need, plus a few extras. The nurses told us that we would be getting shipments every 2 weeks for 2 months, and then once a month after that. Happily, HomeMed will also deliver our magic Vivonex, so we don't have to deal with Caremark!!!! This is great, as it will cut down on $130+ per month copays for this stuff that I would have to put on my credit card and wait to be reimbursed for through the supplemental insurance company. Plus, everything would come at once as a standard order, which means less phone calls to coordinate everything.
So anyway, Autumn is doing very well with her feeds. She has not had any episodes of vomiting, and only one time did she complain that her tummy hurt, which was remedied by holding her up and letting her get out a good burp. The feeds are very slow--only 10 ccs per hour during naps and all night. We never got an 'official' feeding plan since we were discharged over the weekend, so Autumn is just getting Vivonex mixed with water for now. Over time we'll increase the amout she gets and add different veggie/fruit purees and other supplements so that she gets a balanced diet. Most of her calories will be given through the tube, but we will encourage her to eat as much as she can since she is still able to, and that is (of course) the 'normal' thing to do.
The incision seems to be healing nicely but I hate having to deal with the hanging tube! The tube itself comes out of her left side, about two inches left of her belly button, just under her ribs. There is a soft plastic disk about the size of a silver dollar around the tube with square gauze underneath to protect it, and the tube itself that comes out is six inches long. At the end, there is an adapter with three small valves--one for meds, one for food, and one to check the amount of liquid in the little balloon which holds the whole contraption in place on the inside. The whole thing has to be taped down so that it won't get caught on anything and pulled. It sucks. Autumn HATES the tape, and protests very loudly when I even mention that I have to change it. I don't think anything hurts her, I just don't think that she likes to be taped then retaped. I usually change the tape every other bath, but clean the site daily with 1/2 strength peroxide and water and change the gauze. Autumn is thankfully okay with that, and she isn't bothered a bit when I shoot calcium in her tubie or hook her up for feedings. Whew. In 6-8 weeks, the long tube will be replaced with a 'button', which will be less cumbersome--and no tape for my Miss Autumn to yell about!
She's back at school and happy. I went with her on the first day to talk to her teachers and see how she was transferred and put on the potty. Goodness knows that I don't want to have to deal with a pulled-out tube! Anyway, her teacher and aide seem to do a good job with handling her, so I wasn't worried. (That will come next year, when she attends 'regular' preschool!!!)
that's it for now. The picture I'm sending is of Autumn at the bowling alley
with her uncle Satoshi, four days post-op. She looks great, and I can't wait to
see how she is doing six months from now when we're up to speed with feeding and
nutrition and the site has had time to heal. Brian and I have NO regrets about
having had this done. She has done amazingly well thus far, and I can't wait to
see how much better things will be.
September 21, 2008: Hi everyone. Just wanted you to know that we are home and doing very well, especially after some pizza and a shower! The visiting nurses came today and showed us the pump, so Autumn had her first home feed at naptime, and again at night. They're starting her slow--10 ccs per hour, which is like a spoonful of Vivonex and water. She wanted to take her VPA and Carnitine orally, but REFUSED calcium, so I told her that I was going to put it in the tube. Autumn was happy that when I told her that she could always have it in the tube from now on.
She is not in any pain, but whimpers if she thinks that someone is going to touch the tube. However, if she is distracted with something, she doesn't even seem to notice. I changed the gauze around the tube without any problems, and hooked her up for the night. We're having a nurse come by tomorrow with bags of supplies, so I guess our current challenge is to figure out where to put all of the new goodies.
regrets, and I know that when she is up to full-strength feeds, she will be even
better than she is now. MDA appointment on Tuesday, so I'll update then, and I
plan on having her bowl Tuesday night with Harrison. She'll go back to school on
Thursday, but I'll go with her to make sure that the teachers know what to do
with the tube (nothing--don't bump it). Just a mom checking in...
More later. :)
September 20, 2008: We're finally going home! We had a visit from the friendly doctor, who gave us the 10 minute 'what to do if the tube comes out' lecture. Autumn's feeds were ramped up from 5 ccs of Vivonex per hour to 10. The doctor wanted us to wait 3 hours to see if she tolerates feeds at that rate, but I am negotiating down how much time we'll be here--hopefully she'll stay the course with only 1 1/2 to 2 hours, then we'll be discharged.
Right now she is in no pain, no Tylenol, and sitting up with Brian on the bench in the room. She sucked down a little bowl of vegetable soup, and is eating some mashed potatoes with it. She is telling me when she has to go potty, but has a diaper on since I'm afraid that I'll bump something if I potty her on the big toilet. Shower and potty will be the first order of business when we get home! She is so happy that we're going home, and is getting bored with Hi-Ho Cherry-O and the few books that I brought. I took the wagon, CoughAssist, IV pole in the box, and big bag of tubes/gauze/syringes to the van and brought in Big Blue. That made ME happy!! :)
Tomorrow we're having a visit with the nurse who will bring the feeding pump and help us start her night feeds. We'll also be setting up delivery services every month for supplies--and I think that our Vivonex will come from these people, which means no more fighting with Caremark!
Overall, this has been a good experience. Autumn has had NO pokes whatsoever. The IV was inserted after she was asleep, and the only pain that she felt was probably waking up from surgery yesterday and being moved a bit this morning. I am in awe of her. She is so strong, and I hope that when she is old enough she'll make good decisions and continue to fight this disease. I'm grateful that the people here have allowed Brian and I to make all of the decisions concering her care, and are working with us to do what we think is best for us. Since we have been here (and all the appointments that have led up to this) we have not once experienced any arrogance by ANY of the staff, nor have they questioned anything that we have been trying to do for Autumn. We were forewarned about possible problems and issues that may arise during situations like these, and we have had absolutely no complaints, except for the 'hurry up and wait.'
Tuesday we have an appointment for Autumn at the MDA clinic in Farmington Hills. I can't wait to see everyone there. They love Autumn, and have followed her since she was first diagnosed 2 1/2 (can you believe it???) years ago. If all goes well, I'll have her back at school on Thursday, but I'll probably follow her and supervise how she is handled.
I have had SO MANY calls, emails, and I know thoughts and prayers sent out. Thank you so much. This has been such a draining two days, but I am so happy that I was able to do the right thing and make what I think is the right decision on Autumn's behalf.
read this quote on the wall which I love. 'Sometimes courage isn't loud strong
but quiet soft.' Love it.
Wendy Persinger, mom to 7 1/2 year-old Harrison and 1 year-old Aaron (SMA-free) and 3 1/2 year-old Autumn (SMA II)
September 20, 2008: Hi guys. it's almost 2pm on Saturday, and I really really want to go home. Autumn is doing great. We used the cough machine this morning, and she was given the okay to eat any and all solid food. She was so happy, and SUCKED down a little tub of ice cream. The surgeon came in around 8 am to check her, and told us that everything was fine with the g-tube site. He told us that someone would be in shortly to start Pedialite g-tube feeds, then small quantities of Vivonex just to see if she would tolerate it. Pedialite was started about 3 hours ago, and she seems fine, no issues. Hopefully Vivonex will be started soon, as we brought our own box, but of course we are being held up, as there must be a doctor's order to put that stuff in a bag, and then in a tube. I told the nurses and doctors that in no uncertain terms that the ONLY thing going through the tube would be Pedialite, water, and/or Vivonex. Nothing else. That doesn't seem to be a problem, but we still need the order from some almighty being to feed Autumn via g-tube. I'm okay with that, but they want to wait 3 hours on the Vivonex drip before they even talk about discharge.
Oh yeah, about that...
A doctor came in an hour ago and told us that there was a problem as far as finding someone on Saturday that can teach us g-tube 101, mainly what to do if it comes loose when we're at home. He ever so gently informed us that if no one could be found, then we would have to stay here until MONDAY, when these other almighty beings will be able to show us the ropes. NO NO NO NO!!!!!! I told this doctor that Autumn was able to eat (and did) and that we could forgo tube feeding until Monday when at that time we could have a nurse come to our home to show us the ropes, or else come back here. I WILL NOT stay in the hospital with a little girl who is certainly well enough to come home just to wait for the 'experts'. Our nurse has been wonderful, and she is working on finding someone to instruct us in the lovely arts of the g-tube so that we'll be able to leave here before too long. My mom is watching the boys, but is probably going stir-crazy without a car and a place to go. Plus, Brian and I miss them, and want to get home and wash the hospital stink off!!!
Right now Autumn is napping. She had a decent night, but we were woken up around 4 am with another family coming into our room with their baby. Yuk. Brian slept on the seat by the window, and I crawled into bed with Autumn, which she was not happy about. Autumn did settle back down again with me next to hear, but she made it clear that she wasn't happy and wanted to sleep "by MEself".
that's it for now. I'm going to pitch a fit if we don't know anything by 5 pm or
so. I want to go home. Hospitals are for sick people, not hotels to stay at when
you are waiting for an equipment vendor. Honestly, if that is a problem, why on
earth did they schedule Autumn's surgery for a FRIDAY?????
September 19, 2008: Hi guys. We're still doing fine here. Autumn fell asleep very easily around 8:30. She is satting around 96-97 and heartrate is high 80s, so we are thrilled. One of the nurses had to come and adjust the alarm on the machine, as it would go off every time Autumn's heart rate dropped below 100--which meant that unless it was turned off or lowered, she probably wasn't going to be getting any sleep!
No pain at all, either. She fussed a minute when I had to change the drain cup (sorry so gross) but I think that she was more icked out than anything. We did a full cough treatment without her fussing that it hurt, which simply amazed me. We even demonstrated for the nurses who came in. I still can't believe that more medical professionals aren't familiar with this machine. Something like this could really help certain individuals (like Autumn and people who have respiratory issues) stay out of the hospital.
Autumn has an IV in her hand, which is coming out tomorrow. She isn't complaining about it at all (they put it in after she was asleep), but has two fingernails on her left hand which aren't painted due to the tape. Daddy will fix it tomorrow!!! :)
Also, I forgot to tell you one of her funnies. When two nurses came in earlier, they asked Brian and I which one of us was going to stay overnight. Autumn, who was sitting quietly in bed, raised her hand. How funny.
So I'll probably try to go to bed in a minute, but I just wanted to say that I am floating on air. I'm so happy that this has gone well for her, and that none of the problems that we prepared for have occurred. Tomorrow the surgeon will meet with us, and I'll be ready with my purple SMA notebook to write everything down.
Thanks for EVERYTHING. My mom is with the kids, and she has been passing along your well-wishes and letting me know who has called. Hopefully, we'll be rested in a day or so, and I'll be in touch personally, although with three kids there is no rest for the weary.
I certainly wouldn't have it any other way.
September 19, 2008: Hi everyone. We're at the hospital now with Autumn, in the room, and they have internet access!!! Yay!!!! So I figured that I'd save about 20 phone calls and just send out an update email.
Autumn is doing GREAT. She is sitting in her room, semi-reclined, watching Blue's Clues in her bed. She is awake and alert, but I can tell she's tired. She is not in any pain at all, as long as she isn't moved. They gave her a shot of Tylenol before surgery, and a bit of morphine afterward, but she is great.
We went into the pre-op room around 11:15 where they took her vitals and we met with the anesthesiology team and surgeon. One of the nurses came too and let Autumn write on his pants, which she was thrilled with. We declined medicine to make her relax, as we didn't want to give her anything that she didn't need, and she seemed happy and content anyway. Not one time was she frightened or unhappy, and we were with her for an hour waiting for the room to open up.
Around 12:30 they got ready to take her to surgery. We put a gown on her, and the surgeon put her in a little wagon with lots of blankets. Autumn was still happy and didn't seem upset at all when she was taken to the o.r. Brian and I kissed her goodbye and went to the parent's waiting room.
About 30 minutes later, I was called by the surgeon for an update. He told me that everything went well, and that she would be in recovery very soon. I stressed that there should be NO HURRY to extubate her (take the tube out of her throat), and as soon as she was in recovery I wanted to be with her just in case we needed to use the CoughAssist to clear her lungs.
(NOTE: Most of the staff were not familiar with the CoughAssist, but we had their thumbs up if and when we needed to use it. We were allowed in recovery which isn't normally permitted just in case.)
Autumn was asleep when we saw her, but she was extubated, and satting at 97-98. Once she dropped to 94 when she woke up, but quickly her numbers improved. She had some oxygen coming out of a mask that was sitting next to her, but didn't need any other intervention. She seemed pretty disoriented, but not in a horrible amount of pain. She was given a tiny bit of morphine then, but that was it. She didn't seem to want either Brian or I to touch her, but I took out some books of my bag, and she seemed to calm down rather quickly when I started reading to her.
After a little bit Autumn was taken to her room where we are now. She is in bed and Brian is feeding her ice chips. Sats are still 98 w/o any oxygen, no congestion, so we are all very happy. She hasn't had anything to eat since last night, but only asked for something to drink. She can't have anything except ice until tomorrow, but she seems happy with that. Tomorrow the surgeon will come in and show us Feeding Tube Basics 101. She'll start out with small Vivonex feeds and gradually work her way up over the course of a week or so. Unless anything goes freakishly wrong, we should be home sometime tomorrow afternoon.
Again, for everyone that's called, emailed, etc., thank you so much. We have been busy this past week, and the stress of the upcoming surgery has taken so much out of us emotionally, that I haven't either had the time or energy to respond. Not one time have I regretted making this decision, and even now, I know that my daughter will eventually thank us for making the decision to have the tube placed. I'm still waiting that someday a cure will be found, but in the meantime, I'm so glad that we have the tools at our disposal to fight this disease.
are coming soon--whenever I figure out how to get them off of my new digital
camera that Brian got me as an anniversary present!!!! You'll love the pictures,
especially the one of her drawing on the doctor's pants.
Wendy Persinger, mom to 7 1/2 year-old Harrison and 1 year-old Aaron (SMA-free) and 3 1/2 year-old Autumn (SMA II)
September 18, 2008: Hi everyone. I just wanted to pass on that Autumn's g-tube surgery is scheduled for tomorrow (Friday) at 12:15 pm at Mott's Children's Hospital in Ann Arbor. If all goes well, we should be coming home on Saturday.
Autumn is in great health despite the diagnosis of SMA, and I know that there is no better time to have this done. Brian and I are being proactive regarding placement of a feeding tube, hopefully to help minimize any future problems that she may have when she gets sick. Still, I'm angry that this disease is causing us to have to put Autumn through surgery, although I know that she is in good hands.
I'll update as soon as I can, either through email or the journal on Autumn's CaringBridge site.
September 14, 2008: Sorry that it's been so long since I've updated! Last week was a long and busy one, which I hope we won't have to repeat.
I got home from my waitressing mom-job on Saturday night, and Brian told me that Autumn wasn't feeling well. That wasn't a surprise, since Aaron's nose had been running like a faucet for the last few days, and he was coughing. Well, Autumn threw up after dinner and again at bedtime. Brian cleaned her up, and gave her a good treatment with the CoughAssist and put her to bed. She got up around midnight, calling for me and crying. I went in her room and help her sit up. She pointed to her closet and said, 'I want my nebulizer.' I was very surprised that she even knew it was in there, let alone wanted it! Well, I put her on the bean bag chair and gave her another cough treatment to loosen everything up, than hooked up the nebulized with Albuterol (helps to break up the gunk in her lungs and expand her airway--Harrison used this before being put on another asthma drug, and Dr. Dagnew said that it is good for Autumn when she is sick). After another cough treatment I put her to bed. Two hours later she was up again, coughing, and asked for the cough machine. I ended up sleeping on the floor in her room, doing cough treatments every 2 hours or so. In the morning, Autumn looked at me and smiled and said, 'thank you for sleeping in my room, mommy.' Made my night...
Sunday we stayed home with two coughing kids, a very tired mom, and a little-bit-sicky husband. We did 6 or so cough treatments, a nebulizer treatment, and kept our fingers crossed. On Monday evening, I got Autumn ready to go to Children's Hospital for the sleep study. She had to be there by 8:30, which is past her normal 7:30 bedtime, so she was tired to start out with. When we got there, I was told that her appointment was for Tuesday, and that we were a day early. Oops. Autumn could have gone ahead with the study if the others who were scheduled didn't show up, but of course we weren't that fortunate.
So we went home, and I put her to bed around 10:00 since we had to do the whole cough routine again. I didn't send her to preschool on Tuesday, since I figured that she would need the sleep.
Tuesday all of the kids went bowling, and we headed back to the hospital. Autumn was soooo tired, but very good. The technician was wonderful, and explained everything that they were going to do, but emphasized that there would be NO shots, NO pokes, and NO medicine. It took about an hour to get Autumn all hooked up with the wires and probes. She had two plastic tubes under her nose, four electrodes in her hair, some on her neck, tummy, legs, and all over her face. I am kicking myself for not bringing a camera. She was such a good sport, but looked like some strange science project.
Lights were finally out around midnight, and yours truly got to sit in a crackly recliner that bent in all of the wrong places. Autumn had a hard time settling down (imagine that) and once the tech came on the intercom and told her to stop chewing on the wires! She had little coughs all night long, but did eventually fall asleep. In the morning around 5 am, the tech woke us up, and began to take the wires off of Autumn. She had gobs of this waxy adhesive in her hair and sticky residue on her face, which I figured I'd NEVER be able to get off. When we sat her up, she coughed continuously until I got her into Big Blue, and even then struggled a bit until I reclined the seat. Note to self--bring the CoughAssist with us to the hospital whenever Autumn goes in for an overnight stay. I never wanted in more than I did on Monday.
We got home around 6, and used the CoughAssist and showered Autumn. The hair gook came out quite easily, but the stuff on her face was pretty stubborn. I put a sweater on her (not the best idea in hindsight) and then she had pretty pink fuzz stuck all over her face where I couldn't get the adhesive off. I made Autumn stay up, and put her down for an early nap after more coughing. She didn't seem like she was feeling sick, but still had that nagging cough, which scared me. Surgery was less than two weeks away, and while I didn't want a cold to snowball into bronchitis or pneumonia, I didn't want to have her take antibiotics and postpone surgery for 6+ weeks if we were able to manage things ourselves.
So this week, Autumn's been hitting the CoughMachine pretty hard--about 5-6 times a day, with one Albuterol treatment either before naps or before bed. I think it's working, as she says, 'I feel better mom.' She still is coughing just a bit, but I think it should be gone by Friday. If not, we'll let the surgeon decide. Autumn has really been having a tough time swallowing foods and it takes her forever to eat even little bites. I'm afraid that the more we get into cold/flu season, the worse it will be if Autumn does get sick and really won't eat. I got two huge boxes from are almighty insurance company, and Vivonex is stacked up in Autumn's closet, and my mom is planning to come up the day before and stay with Aaron and Harrison when we're in the hospital with Autumn. Hopefully things will go well. We'll know on Thursday what time surgery will be scheduled for on Friday, and if all goes well, we'll be home sometime on Saturday. Autumn's surgery will take place at the University of Michigan Motts Children's Hospital in Ann Arbor.
Still as much as I hate this, I am 100% sure that it is the right decision for Autumn, and we need to do it NOW in order to keep her healthy. I have never been in denial as to the severity of this disease, and have seen what can happen if you are. I firmly believe that these sort of interventions will eventually save Autumn's life, and allow her to grow up as healthy as possible.
Okay, back to the sleep study... The technician wasn't able to interpret the results for me, but she did say that Autumn rolled around quite a bit. We have an appointment with Dr. Toder (pulmonary doc) on October 10 to discuss the results. I'd be surprised if ANYTHING was normal, especially with the coughing and being up so late. The tech commented to me that she was glad that we were able to keep Autumn's beditime consistent, and that she has seen kids with psychiatric and severe sleep disorders that were brought on by not having consistent bedtimes and not having enough time allowed for sleeping. Not the case here--all of the kids turn into little monsters if they don't get at least 12 hours of sleep at night, even Harrison.
So that's it for now. After 3 showers, the fuzz did come off of Autumn's face, but there is still some on her neck. We'll work on that before surgery...
love and hugs to us on Friday. I'll post and let you know how it goes as soon as
I can. I'm scared at the thought of having my baby girl put under anesthesia and
the risks that entails, but am excited about the thought that she will be so
much healthier in the long run, and happier that she will be able to have more
time to play and do what she wants, time that now is taken up with me
laboriously trying to feed her.
September 5, 2008: First of all, let me say that I am so sad, I am so angry about what SMA is doing to my family and to my little girl. I hate this disease with everything that I have, and hate that it takes up so much time, so much energy, and still we won't be able to defeat it and make it go away.
That said, Brian and I made the decision to have a g-tube placed for Autumn. Surgery is scheduled Friday Sept. 19 and will be done at Mott's Children's hospital at the University of Michigan. Autumn and I met the surgeon today and liked him immediately--Peter Ehrlich. He has worked with children with SMA and other types of muscular dystrophy. He sat down, talked to Autumn like a real person and showed us what will be done.
I'll back up a bit, I think I'm getting ahead of myself.
We first met with a nurse who went over the paperwork, current medications,stuff like that. Marilyn was so nice, and had little baggies with her that contained the g-tube and valves so we could actually see what would be put in Autumn. She also gave Autumn two dollies that had g-tubes with different valves, which probably helped me as much as it did her. I've seen pictures of tubes, but never actually held one, and saw how it worked. She gave me some information that I plan to go over in the next day or so. (As you can well imagine, this is hard to digest all in one sitting, so I'll do it in chunks.) The surgeon came in, and explained everything again to me, using little words--I never once had to ask him to repeat himself or clarify any medical terms. Greatly appreciated Dr. Peter!!!
He answered all my questions, and told me to feel free to email him with more, should I think of any. He reassured me that we were making a good choice, and the look on his face confirmed that when I showed Autumn's growth charts. Her issue is 'failure to thrive' but I hate that, especially since she has been doing EXCEPTIONALLY well, given the severity of her diagnosis. He agreed, and told me that g-tube placement was one of the most common surgeries done on children, only after ear tubes. However, I was concerned about Autumn being intubated (put under anesthesia with a tube down her throat). He told me that after he left his office, to go to anesthesiology/surgery prep and request a consult, which of course I did.
At the other office, I met with an anesthesiology nurse who took me in a room by myself. Autumn was sitting at a table with another girl who was waiting to be called for surgery, and both were decorating little white change purses with markers. No need to disturb her--she was happy and quiet, for a change... Anyway, the nurse was very nice, answered all of my questions, and informed me that in very rare instances, children with SMA may experience a sharp rise in body temperature during surgery (which I was not aware of) and it would be noted on her chart, so that the doctors would have drugs available to counteract that effect. They also were aware of a potential life-threatening reaction to the muscle-relaxing drugs, and again it was noted on her chart not to use them. I was shocked--these people were ON THE BALL!!!! Nothing was more reassuring than that. I know Autumn is in the right place, and these people will take care of her. I was told that Brian and I can stay with her right up until they do the surgery, and be with her when they put her to sleep. They told me that she will be given drugs to sedate her, and gas to go to sleep before they put the IVs in, which made me so happy. Afterward, we can be with her immediately. The nurse also told me to bring the CoughAssist with us, which will help her to clear her lungs and avoid any aspiration pneumonia. (The CoughAssist weighs over 25 pounds and is a beast to lug, so I guess we'll be hauling it in our little wagon.)
So on Friday, September 19 we're going to have the surgery done. The surgeon will call us the night before and answer any last-minute questions, tell us when we need to stop giving her food and liquids, and let us know what time to arrive at the hospital. If all goes well, we should be home on Saturday. Dr. Peter said that it was good that she was in excellent health, and that she was able to eat by mouth, as it is better to start the g-tube feeds slowly and allow the surgical site time to heal. Autumn will be fed at night most likely, but still be able to eat orally, although we will be careful to monitor what she does eat until we get the nutrition stuff down pat.
The Vivonex should arrive in plenty of time before surgery, I was told by Brian's wonderful HR lady. MDA Dr. McCormick is calling in a script at Walgreens to hold us over until the mail-order guys get their sh*t together, but we were told that all these glitches were (hopefully) taken care of. So far, I have not been given any grief about feeding her an amino acid formula by ANY of the doctors or nutritionists, which was a pleasant surprise, given what I have been told by other parents who have gone through this exact same thing. My SMA MDA friend Suzanne is working on a diet for Autumn that will balance the tube feeding with oral eating. Her daughter has been through hell and back, thanks to Suzanne, and she is better than any nutritionist that I have dealt with.
So after the tube is in, Autumn will have this long 'end' sticking out. I was told that after 8 weeks or so, scar tissue will form to prevent the tube from coming out, and she'll be able to switch the long tube to a button--much like an air valve on an inner tube. I was concerned that the long tube will catch on something, but was told that there are ways to secure it.
I think I'm done for now. I'll fill in the gaps later. Monday night we take Autumn in for the sleep study, and of course I'll update on that too,but now I'm at peace knowing that this is the right decision, we aren't waiting too long, and I'm comfortable with these doctors who will be taking my daughter's life into their hands.
September 3, 2008: Hi guys! Here's one about Aaron for a change..
Today Aaron had his well-baby checkup. He is growing like a weed--32 inches long and 23 pounds 11 ounces. He's in the 95th percentile for height, and just over the 50th for weight. Dr. Dagnew had one heck of a time checking him over as all he wanted to do was get down and run.
(I told her he doesn't walk, he runs instead.)
Overall, she was very pleased with how he was doing. Heart and lungs sounded fine, he's eating and growing very well (geez--does he LOVE to eat), and is sleeping 12 hours at night plus a 2-3 hour nap. He's still nursing two or three times a day, which she gave the thumbs up to, but is able to drink from a sippy and an open cup with help. He has six teeth, three on top and three on the bottom, with another one coming in. He got two shots, one for chickenpox and one for Hib. Dr. Dagnew doesn't believe in giving babies too many shots at one time, which I like. She said although some studies say there is no link between immunizations and autism, she isn't sure about that, especially since so many drug companies help to fund the studies, and prefers to err on the side of caution. Worked for the other kids anyway!
Autumn was there with me, and I filled Dr. Dagnew in with all of the new appointments. She is more hesitant about g-tube placement than any of the other doctors that Autumn has seen, but overall is supportive of whatever we decide. (She has had an older patient with SMA before, but only when she was sick, and they type of SMA was more like a II/III, so weight management and nutrition wasn't as much of an issue). She told me to keep her informed regarding the results of the sleep study next week and what the surgeon tells us on Friday, so that she can note it in Autumn's record, as sometimes she doesn't get a report.
So that was good.
Here's the p*sser for the week.
I have been trying since JANUARY to get a prescription for pediatric Vivonex filled for Autumn, and we still have yet to receive any. Here is how the scenario has played out. Those of you who are in the field will sympathize, I'm sure.
1. Sent in prescription for Vivonex to Caremark in January. It was returned with a note that it was no longer available from the manufacturer.
2. I called Novartis nutritionals, found they merged with Nestle, and was assured that it was indeed produced and available. I called Caremark back and let them know.
3. No Vivonex after a month, so I called back asking why. I was told that they couldn't fill the script as it wasn't for 'Vivonex Pediatric Powder'. I called the MDA neurologist and got a new script for 'Vivonex Pediatric Powder' and sent it in.
4. No Vivonex after another month, so I called and was informed by Caremark that it wasn't covered under our plan.
5. Getting more and more p*ssed off, I called Brian's HR lady (who is wonderful) and had her take care of this little problem, which she did.
6. Got a new script for more since it had been months since the old one was sent in. Sent that in 2+ weeks ago with another one of Autumn's prescriptions.
7. Logged in to Caremark's website and discovered that although the new prescription was on its way here, NOTHING was on record for the 'Vivonex Pediatric Powder'. Became even more p*ssed off and sent an angry email to nice HR lady as well as Caremark.
8. Caremark rep called when we were at bowling, so I called back last night. I was informed that their computers were down so I couldn't speak to anyone in their pharmacy department, but a note was on file that the script couldn't be filled since it was illegible. WHAT!?!?!?
9. Sent another email to nice HR lady, and was told that she would check into that. Plan to call Caremark tomorrow and question why if the script was illegible (it wasn't--I wouldn't send in something that I couldn't read myself and risk them not filling it and/or screwing up), they didn't call one of the two numbers listed for the MDA doctor and ask for clarification.
I would welcome any suggestions on how to deal with this particular situation. I'm so concerned that since Autumn will be having a tube placed soon, this is will be her main source of nutrition, and our insurance company continues to jerk us around. She NEEDS this stuff, and I made it perfectly clear to them of that need, and that she would be fed via g-tube rather than orally. Lawyer time??? I really don't have the $ or the energy for that, but how dare they pull this sort of crap and put my daughter's health at risk. As if we don't have enough to deal with.
rave. I'll keep you posted regarding the surgical consult on Friday. I hope this
is a decent guy, and that he doesn't have the ego that some do. They should
clone Dr. Dagnew. I wish more in the medical profession were like her.
September 1, 2008: Hi everyone. Well, we got back from our 3rd telethon appearance a little bit ago, and both of the little kids are asleep. Harrison is out playing with the neighborhood kids, and Brian and I are TIRED, after going to bed after midnight (watching the telethon of course) and then getting up at 5 am for our morning appearance.
First of all, I can't begin to tell you how much fun we have, and how wonderful everyone is. We saw every one of our MDA friends today. The kids were great, and our telethon appearance was wonderful. I met some new moms too, and of course everyone compares notes on equipment, doctors, therapies, etc.
The family that went out before us also has a child, Mikah, with SMA type I/II. He drives his powerchair with his finger since it fatigues him to operate a standard joystick. He turned 3 in July, and he and Autumn hit it off very well. After our spot, Mikah and Autumn ended up in the green room at the studio, and were facing each other in their chairs, sharing blueberry and cracker sandwiches. Mikah's chair doesn't elevate like Autumn's does, and he was absolutely fascinated with how hers worked. He is starting preschool too, so his mom Shaylee and I were talking about that. Shaylee and her mother were taking some pictures, so hopefully I'll get those emailed so I can pass them along.
When the green room became crowded, we went outside. Another boy, Ian, who was friends with Mikah came a bit later. He also has SMA, and was in a stander with wheels that he could push around. He was going to turn three in November. It was wonderful to see all of these kids, close in age and with the exact same diagnosis, just laughing and talking together. My Autumn was driving all over the parking lot, laughing and being such a ham. She was so happy.
Of course another family came to talk, and their daughter Jessica has SMA II, and was 7--the same age as Harrison. WOW! Jessica's friend Olivia was right behind her, and yup, she has SMA as well. I was so happy to be able to see of these kids, who all (except for Ian) had powerchairs, and looked wonderful. I was talking to Jessica's mom and Olivia's dad about g-tubes and the amino acid diet, and they were very positive, and gave me some pointers. Jessica's mom took down information for me, and told me that she'd send us some more Vivonex ('Geez--I can't believe she DRINKS it!') to hold us over until we get our shipments set up through the insurance company. In comparing notes, Autumn seems to be doing very well with the different therapies and nutrition. It is so good to be able to talk to others who understand exactly what we are going through. So many people are supportive, but the only people who truly understand are those who have another child with SMA. I am so thankful and honored that MDA invites us to these events so that we have the chance to meet all of these people.
I wish that I could have stayed all day, but Autumn and Aaron were very tired, so we had to come home. Harrison was so happy to be on television, and presented a check for $39, which was the amount of money that he raised for MDA from donations and selling little items in his bedroom store. The food was good too. There were bagels, breakfast sandwiches, and juice in the morning, and a Del Taco bar with piles of fresh fruit and cakes in the afternoon. It was so much fun, and definitely for a wonderful organization. I'll send pictures as soon as I can, and want to thank everyone who watched the telethon (wherever they are) and donated to this cause.
MDA is working to eradicate Pompe's disease, and are the main sponsors behind the SMA Treatment Acceleration Act. I keep hoping that SMA will be next, but in the grand scheme of things, it really doesn't matter since no matter what the disease, it will spare some other mother the pain of losing a child or going through the hell that we have been through.
cried so much yesterday and today, but I am so happy. Jerry Lewis is a hero for
doing the telethon all of these years and raising awareness and more money that
I can imagine to help his kids. I'm honored and humbled to be a part of this
group, and hope that I can help just a little bit. Believe me, I know how hard
it can be, and what we have gone through is nothing compared to that of other
August 29, 2008: This is really starting to get to me. It seems that every time I take a kid to the doctor, I end up having to make more appointments. Here's the latest:
Sept. 3--Aaron has a well-baby visit with Dr. Dagnew
Sept. 5--Autumn has her first consultation with the g-tube surgeon
Sept. 8--Autumn's sleep study at Children's hospital
Sept. 23--Autumn has an MDA clinic visit/checkup
Sept. 29--Autumn meets with a physiatrist (I may cancel this one, not sure if we need it)
Oct. 10--update appointment with Dr. Toder (pulmonary) to review sleep study results
See what I mean? Of course this means that things are getting done before the cold/flu season, which means less time in germ-infested waiting rooms. Still sucks, though...
Autumn had her upper GI yesterday and did very well. I have never had one, and didn't know what to expect. It took us longer to drive to U of M than the actual test took, and certainly longer to park the van!
Anyway, we went in, and Autumn changed in to one of those little gowns. She was happy about that, and said, 'Oh, it's cute.' We were already in the system, so there was NO PAPERWORK at all to fill out. Imagine that! After a minute we were called back into the x-ray room. A very nice technician laid Autumn down on the table and took some chest x-rays. After a minute, the doctor came in. The tech gave Autumn some stuff to drink that looked like liquid chalk, which she had to drink from a straw while lying down. She did very well with that, and while she was drinking, the doctor and a resident were taking more films. The whole thing only took about 10 minutes. Autumn was great, not scared at all of the machines. She probably remembered that stuff from last year when she had numerous x-rays due to her leg fracture. After we were done, Autumn got dressed, and then we left. The films will be read, and results discussed on the 5th when we meet with the surgeon.
I hope things go okay, and we like the surgeon. If not, we have our backup recommended by MDA at Children's, but I hate to keep flip-flopping and taking the chance of Autumn's records getting lost or mixed up. I'm more confident that the g-tube is the right decision. I'm not sure if Autumn is losing her swallow or just gets tired of eating, but today I have her some eggs and grapes, and when I saw her plate, she had a pile of chewed grape skins pushed aside. I've noticed this with tomatoes and blueberries too, all foods that she was previously able to eat without a problem. She can chew fine though--she eats croutons and loves to chew gum, but just seems to struggle swallowing some things. At least she's not aspirating--if that were the case, then we would notice other things going wrong like choking and aspiration pneumonia.
Okay, that's it for now. Fridays are therapy days, which is so much fun for Autumn, and I have to try to get a few things done around the house. Again, please watch the telethon this weekend, beginning Sunday night, and if you are in this area, see us on Channel 20 sometime between 8:40 and 9:15 am. We may be on a bit later, but that depends on how the broadcasting goes, coordinating with the national telethon. I am so excited. I love telethon weekend, and will do whatever I can to help MDA. Harrison has been raising money for MDA all year by selling little things in his room. I told him that whatever MDA money he has in his special little box, I will match it.
too we will attend a carnival at the Taylor Moose which will raise money for
MDA. We're the appointed spokesfamily. The kids will have a great time, and it
sure is a nice change from doctor visits!
August 27, 2008: Hi everyone. Today, I'm so tired, but I figured that I'll do this one thing before bed.
Autumn and Harrison had appointments today with the pulmonary doctor. Harrison was diagnosed with mild asthma 1 1/2 years ago, and Autumn goes because respiratory issues are a common complication from SMA. Well, we just love Dr. Toder, and I was so happy that both of the kiddos could go on the same day--it sure saves on parking and child-care issues!!!
I was a bit nervous as Harrison had been doing his shallow 'asthma cough' this last week, but Dr. Toder said not to worry, that it was probably a combination of allergies and a reaction to all of the dust being kicked up outside due to the construction. Harrison takes 1 puff of Flovent in the morning and evening, plus Albuterol as needed, and we're to stay the course with that. His lung tests all came back normal, so she won't have to see him until next year! We still don't know what caused Harrison to have asthma in the first place, since no one smokes, we're not around smoke at all due to Autumn's issues, and neither Brian nor myself has a history of asthma. Weird. Hopefully he'll outgrow it, which is a possibility.
Autumn is also doing well, and her lung tests were good too. Dr. Toder was pleased that we use the CoughAssist daily and more when needed, and was impressed to hear that she has never had any hospitalizations and was only on antibiotics one time, which is very unusual for any child (the antibiotics) and extremely rare for a child with SMA. I told her about our plan for g-tube placement, and she agreed that it would help Autumn, especially when she did become sick--her body could fight the bugs and we wouldn't have to worry about her becoming dehydrated, not getting enough calories, or aspirate if she threw up. She recommended Dr. Becker at Children's, so I'm seriously considering having the surgery done there where her name keeps coming up, rather than at the University of Michigan where I don't know anything about any surgeon. I'll make some phone calls tomorrow and decide. Autumn's upper GI is Thursday at U of M (first step toward g-tube land), and where the results go is where the surgery will be done. (P.S. Autumn has never lost weight, which is why some people elect to do surgery. She is just not gaining weight at the rate which she should be, even with the SMA diagnosis factored in. It is desirable for her physically to be on the thin side, but the fear of the doctors--and us as well--is that if she gets sick and can't eat, there are no 'reserves' for her to depend on. So far, every doctor that we have spoken too has given us nods of approval and assured us that proactive placement of a g-tube was definitely in Autumn's best interest.)
Dr. Toder did say that Autumn breathes with her diaphragm (sp?) rather than with her chest muscles, which is common with SMA. I told her how much she sleeps, and she said that it was quite a bit for a 3 1/2 year old--12 hours straight at night, with a 3 hour nap. She is ordering a sleep study for Autumn on September 8. If the sleep study shows Autumn's oxygen levels drop past a certain level, or frequently during the night, she may prescribe a BiPAP machine for her while she sleeps. Since we don't have a pulse ox for use at home (those STUPID insurance regulations won't allow her to have one even though it is absolutely medically necessary), we have no idea what her baseline is. If her oxygen levels drop and CO2 levels are higher than they should be, this may indicate that Autumn isn't able to take deep enough breaths while she sleeps, and may be contributing to her fatigue. BiPAP will allow her muscles to rest, and give her deeper breaths when she sleeps. The machine uses a mask, either over her nose or nose and mouth and gently 'blows' room air into her lungs, thereby allowing her chest muscles to expand further than she is able to do herself. I have talked to several parents whose children use the machine--about 3/4 of those who I am in contact with who have children with type II use BiPAP, and 100% of those with type I do--unless they have a trach. The parents have told me that it helps their kiddos so much, and like the CoughAssist, they come to like it and ask for it.
It's funny--the first time I read MDA's SMA booklet, I saw pictures of a baby on BiPAP and a baby with a trach, those images burned into my head, and bothered me for the longest time. I don't feel that way anymore, although I hate the thought of more equipment!
I KNOW that these things will help Autumn. Every piece of equipment that we have we use until it is either worn out or outgrown. Everything has helped her, and we have the best doctors, therapists, and other SMA parents who take the time to listen and understand what Autumn needs. She is doing so amazingly well today because of the stander, the AFOs, the seating system that we use at the table, physical therapy, pushing her little green and purple wheelchairs, the powerchair, the CoughAssist, the amino acid supplements. I told Dr. Toder that while if things aren't broken, we won't fix it (if the sleep study is normal, then maybe she just is a sleepy kid), but if something is out there that will help MY Autumn, allow her to do what any other child can do, keep her healthy, and most importantly FIGHT THIS DISEASE AND KEEP HER HERE WITH ME, well--then I want it. No stupid insurance company will tell me no. They've probably never had a child with a disease like SMA, and certainly have never dealt with a determined mother like me.
Aaron's well-baby visit was moved from tomorrow until September 3, which is a nice break before school. Autumn's upper GI is this Thursday. We were asked to do another MDA appearance at the Taylor Moose on Saturday at 12 pm (fun one--just go to a carnival and talk to people about MDA). We have our Telethon appearance on Monday morning. The two big kiddos start school on Tuesday, and then the sleep study September 8. Of course other appointments are peppered in here and there, and I'm hoping I won't be too sick of doctors to schedule a dentist's appointment for four out of five of us with a decent set of teeth.
Oh yeah--Harrison is only 7 and starting THIRD GRADE!!! In Michigan, the cutoff for birthdays is Dec. 1, and being a November baby, we decided to start him, even though he was young. So far, he has done extraordinarily well, and loves school. Tonight I took him to meet his teachers and see his new classrooms after bowling. His teacher seems very nice, but I hope that she likes garbage trucks! Aaron is good too--he'll get his update turn in a few days when we go to see Dr. Dagnew again.
Thanks for reading.
August 19, 2008: Hi guys. Today Autumn went to see another gastroenterologist, and I must say that she was night and day different from that yo-yo we saw before! I had a packet that Dr. Dagnew sent complete with growth chart, blood test results, diet info., AND a letter saying that we were decent parents and able to take care of Autumn (i.e. not totally crazy..). I'm glad that we had the blood draw results as well as the diet stuff. It saved so much time, and Autumn didn't have to get stuck again! The blood tests she had before were normal, and nothing had changed since they were done a few months ago, so the doctor said that there wasn't any reason to have them redone and check for the same thing.
So overall, things went well. Autumn doesn't have any symptoms of the usual causes of failure to thrive (I hate that moniker--it just means not gaining weight and/or growing at the normal rate) such as Crohn's disease, celiac disease, intestinal problems, celiac disease, reflux, aspiration, food allergies, diarrhea, malnutrition, diabetes, etc. She just has a poor appetite. However, the doctors and dietician were shocked to see that she grew 4 inches in 6 months, which is quite a bit for any child, and she is gaining weight, but just too slowly. We were given kudos for finding out about Vivonex, and told to continue with that--currently we give Autumn 1 to 1 1/2 packs per day, but could go up to two if she cooperates. We still need to make sure that since she gets the supplement that we keep intake of other protein sources in check. We need to add a bit more fat to her diet, so I'll add 1-2 tablespoons of flaxseed oil to her food daily. Otherwise, the dietician admitted that although we are doing fine, Autumn still needs more calories, which is tricky since due to SMA she just doesn't want to eat, and the higher-caloric foods such as whole milk, meat, butter, fried food, etc., are just not good for her, and is difficult for her body to break down. So as best we can, we're to stay the course that we've been on.
So bottom line is that the GI doctor and the dietician both recommend the g-tube for feedings at night. They both looked at Autumn's food journal that Brian and I kept for a few days, and determined that Autumn just isn't eating enough, and it isn't practical nor desirable for us to spend all day trying to force-feed her. She needs approximately 900 calories a day, and even with the Vivonex pack and Mango Juice (totaling 370 calories per day, maybe a bit more and added calories from what little food that she eats) there is simply no way that we are able to get that in her without sacrificing what she needs in the way of nutrition. We were also told that the more we push (which we aren't) the less that she will eat.
So next Thursday morning Autumn has an upper GI scheduled to determine if structurally everything is in the right place, and help the surgeon to determine where the tube will be located. We will also have a consult with the surgeon, as well as a swallow study done. The swallow study is just to make sure that she isn't silently aspirating on foods, and to help determine if any type of occupational therapy might be able to help her with that.
So that makes at least three more doctor's appointments BEFORE the actual g-tube surgery. Sigh... Next Tuesday I have to take Autumn and Harrison to the pulmonary doctor, and Aaron has a well-baby visit the day after that. Thursday is upper GI day, Friday is therapy day, and Saturday the Mommy gets to (yeah right) sleep in.
I'm SICK of running around and going to these doctor's appointments. It takes so much time and energy, but at least I feel better that we are in the right place. There was just no way that I was going to take my Autumn back to that first crazy doctor.
My SMA friends are helping me to formulate a 'starter diet' for Autumn when she does begin g-tube feedings. I want to do some research and at least have a plan in place so that it won't be as much of a fight regarding feeding. There is so little research in the area of SMA and nutrition due to it being a fairly rare disease, so parents of children with SMA, rather than doctors, tend to give the best advice. The doctor and nutritionist that I saw today both were very forthcoming in saying that they had never seen a child with SMA before, but were wonderful in listening to me, and reading the literature that I gave Dr. Dagnew about the amino acid diet and nutrition.
So that's one hurdle, I guess. Next is the surgeon and anesthesiologist, which is even more important. G-tube surgery is very common, but I have learned from MDA, Dr. Dagnew, and other SMA parents that anytime a person with SMA undergoes surgery, you must be so careful that the person doing the surgery, those administering the anesthesia, and those in the recovery room understand SMA. I know of more than one parent whose child had SEVERE reactions to anesthesia, and had to spend a fair about of time in the hospital dealing with respiratory complications. Bottom line is that surgery can kill her, and those who are doing any procedure must be aware of that.
a huge weight, and today I feel like I'm underwater and can't breathe, but I do
know that it's only temporary. This is the BEST thing for Autumn, and it is just
another tool that will fight this disease until a cure can be found.
August 14, 2008: Hi everyone. I just realized today that our Aaron is one year, one week and six days old--the exact same age as Autumn was on March 1, 2006 when she was diagnosed with SMA. It is so hard to believe. That seems like ages ago, but I remember everything so clearly...
On Labor Day Monday, we will be featured as one of the families on MDA's telethon. This is our third year doing it, and we are all so excited. We don't have a specific time slot yet, but it should be sometime in the morning. We will be going to a pre-telethon picnic the week before, and will get further information, which of course we'll pass along to you. Hope everyone will find time to watch, and if you are able, PLEASE donate. These people have done everything that they can to help us, and MDA is pumping more money into research to find treatments and cures for these diseases. If even one more mother doesn't have to go through what I have been through, I will be so happy. Of course, should a cure for SMA be found, believe me, I will be one of the first ones in line.
Our speech at the golf outing went well. I just read what I had written, and I think that it hit a chord with those people who attended. It was a long day--we were supposed to speak at 1:00, but didn't get called up until 3:30 or so. Aaron was so tired, but both he and Autumn were very well behaved and friendly to everyone. Autumn saw a few MDA friends, and was able to run around and play, so she was happy. The best part of Harrison's day was the all-you-can-eat food fest. (When we got to the country club, Harrison noticed a tent set up and said, 'Wow--let's go down there and get some FOOD!') He had a hamburger with all of the trimmings, and for dinner a steak that was about as long as his arm. Wish Autumn shared his appetite...
later. Laundry is calling me...
August 6, 2008: Hi everyone. Sorry that it has been so long since I've last updated. We have been busy (as usual). Aaron just had his first birthday, and we have been excited about that. It's hard to believe that he is one already. He is growing like a weed--he fits into 18-24 month clothes already and is starting to walk. He loves books, which is almost a family requirement, and Harrison has already been indoctrinating him into the world of garbage trucks, showing him his trade magazines and reading him his beloved books.
Saturday we have been asked to speak once again to a group of UAW workers at a golf outing to benefit MDA. Our MDA contact said that the coordinators of this event actually asked specifically for us, since we spoke at this event last year. Of course, we are more than happy to go--anything we can do to benefit MDA is good, and Harrison & Brian really enjoyed the complimentary steak and chicken dinner! Anyway, since I'm not the best at speaking in front of people (shocking, since I can be a real loudmouth!), I'm planning to read my 'March 1st' email that I sent out in 2007. I'm attaching it in case anyone missed it. I read this letter at another MDA event, the Black & Blue ball in April of 2007, and it went over very well. It's hard to read, but I think it sums up what we went through in the first year after Autumn's diagnosis. Every time I read it I cry, but I'm amazed at how far we've come. I still hate SMA with everything that I have, but I figure the more people that we reach, the more others will be aware of families like ours. Hopefully, organizations like MDA and SMA Support with financially benefit, and eventually a cure will be found for these diseases.
Believe me, my Autumn will be first in line...
On August 19, we are meeting with the second opinion gastroenterologist at the University of Michigan for another consultation. I spoke on the phone to Dr. Dagnew, and she wants this to be the last step before g-tube placement. Hopefully, we'll be able to be referred to a good surgeon, which is essential to minimize complications from the anesthesia. I also spoke to Dr. McCormick (MDA neurologist who has been following Autumn since the diagnosis) and I asked her if it was premature to consider a g-tube placement at this time. She told me absolutely not, and most likely that Autumn would need one down the road, given her current circumstances, and she applauded Brian & I for being proactive in making this decision before Autumn gets sick enough to make placement a life or death decision. I've been talking to parents who have been in that situation, and had to have it done in an emergency, and their stories were frightening. Again, we want this to be on OUR terms, under the best circumstances. Autumn has been doing well, and she is so young, that she probably won't ever remember not having a tube. Heathwise, her SMA doesn't seem to be progressing. She is slowly gaining weight, tipping the scales at 27 pounds (at 3 1/2) but is a whopping 41 inches long, growing 4 inches in six months. Now we know what she uses those calories for...
Here's more good news--between being a b*tch and having a little extra push from Brian's wonderful human resources department, Autumn's Vivonex will now be paid for by the almighty insurance company!!!! The copay is pretty hefty (over $100 for a 90 day supply), but our supplemental insurance should take care of that. This will be covered even though she currently takes Vivonex orally, and not through a tube. Yay!!! I really think that her being able and willing to drink this stuff is what has kept her from becoming really emaciated, and allowed her to do as well as she has. When she gets her g-tube, she will be fed 2 packs of Vivonex per day (currently she takes just one), most of the feeding during the night. When Dr. Dagnew spoke to me, she told me that the GI doctor had never heard of a child taking Vivonex orally as it tastes so bad, but was very impressed that we were able to get any of that in Autumn. With the tube feeds, she won't be drinking as much, so we'll be able to get more fruits & veggies in her. Maybe...
about Harrison. He will be starting third grade this year, even though he is
only 7. In Michigan, the cutoff date is Dec. 1--they have to be 5 by then to
start kindergarten, and Brian & I went back & forth about starting him
since he would be so young. Well, we're glad we did since he has done extremely
well, and loves school. He reads absolutely everything, and recently got a
subscription to the magazine 'The Hauler', which is about different kinds of
trucks (a grown-up industry magazine, not one targeted at kids). He loves to
ride his bike in the neighborhood since right now three houses are being built,
and various others are being landscaped. He is still bowling on a league with
Autumn and his best friend Bethany, and is the BEST big brother to Aaron and
Autumn. We are so proud of him, and can't wait to see what he will be when he
More pictures later.
June 29, 2008: Today was a great day. Last Thursday I took Autumn swimming with me at one of our local pools. The weather was beautiful--hot and sunny. We got all suited up, went to the pool, and were in the water no more than 15 minutes, and a freak thunderstorm blew in. We were evicted, so to speak, and had to go home. Autumn was so disappointed.
Today, we tried again. After a cool morning, the sun came out and it warmed up. We went to the first pool, and it was closed. We drove to ANOTHER one, and it was closed too. Grrrr.... Autumn wimpered all the way home, wrapped in her swimsuit coverup over her blue bikini, clutching her inner tube. Time to think of something else.
Harrison was playing outside with his best friend Bethany, and came home around 4:45. I decided to take the two older kiddos to see that new movie, Wall-E, and leave Aaron with Daddy at home for some playtime. This was Autumn's first movie, so we were excited to see how she would react to it. Harrison wasn't as excited the first time we took him (to see Garfield), as he isn't a TV type of kid, and thought that the sound was too loud.
Anyway, I bought the kids the little tray with a drink, a small bag of popcorn, and little bag of candy and settled them in. Autumn LOVED the movie, and seemed to really enjoy the atmosphere. She sat in her Big Blue, and was quiet and happy the whole time. Harrison liked the movie too, especially since a main theme was too much garbage. (BTW, anyone who has kiddos 3+ would probably love the movie. It's family-friendly, non-violent, and is just so darn cute.)
This week we (thankfully!!!) didn't have any doctor's appointments, which was a relief after going for 3 the week before. After the nightmare GI thing, I wrote Dr. Dagnew a letter explaning what happened, and why we weren't going to pursue treatment with him. Well, she has been in contact with us three times this week--each time she has called no earlier than 6, which is obviously her 'off' time. She is exploring options regarding GI docs at the University of Michigan (not too far from us), and doing much of the legwork for us, as I'm finding out that a lowly parent such as myself is often not able to directly contact the high & mighty doctors, not even to make an appointment! Imagine that... So hopefully we'll find something out at the beginning of this week.
Here's more, and just another reason on top of many to support my beloved MDA and the wonderful people who work there:
Two weeks ago, I emailed MDA's Julie, Maggie, and Denise regarding our need to find a good GI doctor. I didn't hear anything, which was unusual, so I called the office, and found out that everyone was at MDA summer camp, and was scheduled to come home Friday of last week. I was told that clinic would resume as usual on Tuesday, and they would be getting back to me. No problems there.
Well, according to the dates on the emails, on Friday, Julie checked my email regarding a GI doctor, and forwarded it to Dr. McCormick. Dr. McCormick responded with a name and phone number of a doctor at Children's hospital who she would recommend to do a g-tube surgery, and told me to call on Monday to set up a meeting. I got this email SATURDAY morning, obviously not during the normal office hours. In addition, this was a home email address, not one from the MIND clinic or MDA. I was floored that these people are once again going out of their way for us and for my Autumn. From what I hear other parents going through, this is NOT the norm. I'm fortunate that of all the doctors that we have seen, we have only encountered one who we have had to 'fire'. Amazing.
So Monday it's back to the phone calls, doctor's visits, etc. It sucks, but I know that my MDA guys and Dr. Dagnew have nothing but our best interests at heart. I'm still scared to death, and sad too, because even though I know that we are probably making the right decision, it still doesn't change SMA. I WISH not walking was the only issue that we had to deal with. Everywhere you look in our house, it's filled with equipment to fight this disease--CoughAssist, tubes, nebulizer, in Autumn's bedroom; stander, neoprene back brace (pictures coming soon--this is a new one), green & purple wheelchairs, knee immobilizers, AFOs, Tumbleforms chair downstairs, vitamins and experimental medicines in the cabinet, the ramp van, to-grow-into-wheelchair and her special trike in the garage, and Big Blue. It sucks. Now if the g-tube thing happens, it's more tubing, a pump, dermatology products, and moremoremore doctor's appointments. Hopefully soon we'll be getting a lift to go upstairs. That would be wonderful to save my back & Brian's. MDA Julie told me that she thinks there is a grant for stuff like that, but I haven't had time to call for 3 estimates that are needed to even pursue it. All in good time, I guess.
If there is one thing that SMA takes, it's time and energy. I love taking care of all of the kiddos, but it pisses me off that in order for her to even do a simple thing such as stand in her stander, I need to almost schedule a block of time for it. Plus, we have to diaper her (she uses the potty very well now, but cleaning an accidental peepee off the stander padding is not fun), put on socks and leg braces, put on the soft back brace, put on her knee immobilizers, put on her shoes, and then finally lift her in the stander and fasten 4 velcro straps, stand her up and lock the back bar in place, and put on the tray.
If someone asks me what I do all day, I will S..C..R..E..A..M. (By the way, I'm also still nursing an almost 11 month-old Aaron and I try to make sure that Harrison isn't neglected.) I will never ever ever complain about taking care of my babies. That is my job, I am a mother, and that is what I signed up for when we had kids. I just wish that I had more time, and the time I had wasn't spent fighting with the 'stuff' that you need because of SMA. Extra time wasted while spent on hold with our mail-order pharmacy or fighting with the insurance companies really pisses me off. I just want to go outside, go to bookstores, visit the library, and do all of the stuff that your average parent does.
Okay, enough about SMA.
I started waitressing on Saturdays about a month ago and love it. Altogether I've been at New Hong Kong for almost 12 years. I got this job at 16, and have worked there full-time through college and most of graduate school. I was at the group homes for about 4 years until I had Harrison, then went back waitressing after becoming nuts staying home. I worked until 5 days before my due date with Autumn, and 9 days before my due date with Aaron (I did tell Chi that I would never again come to work saying I'm pregnant!). I love it. My best friends work there, and I have nothing but love and respect for my boss, who has supported me through everything. Brian takes care of the kids while I'm gone every Saturday night, and I am so thankful that after working all week himself, he happily kisses me at 4:15 and sends me on my merry way. Ahhhhh---it's like therapy, only I'm the one getting paid.
Okay. Guess I should go to bed now, huh? Please stop by our web sites and sign the guestbooks! CaringBridge is a smaller site, and the pictures are more current, but the SMAngels has much more information.
thanks for reading. I have received so many emails from everyone wishing their
best. That helps me through when things are not-so-good, and I really REALLY
June 22, 2008: Well, I'm glad that I didn't write exactly what I thought after Autumn's first GI appointment on Friday--I was too damn mad. Today was the first chance that I've had to send out any emails, so here goes. I'll try to keep it clean...
We didn't know anything about this doctor. He was the first available. Autumn and I were led into the typical exam room to wait. The door was left WIDE open, so we were able to see the other rooms. Well, this yahoo came out of one room after seeing a patient, and into ours without washing his hands!!!! I was a fool, and should have walked out then, or at the very least said something. Well, after not washing his hands, he sat down, and began firing questions at me. I asked if Dr. Dagnew sent over any information, and was informed that she didn't. Sigh. Not a big problem, but sometimes doctors listen better to other doctors than to the parents. This guy definitely fit that category. He hardly gave me a chance to answer one question before asking another one. Most of the questions dealt with chewing, swallowing, poop, throwing up, stuff like that. I kept repeating that I didn't think she had any problems with most of that, except for the constipation that was a result of NOT BEING HUNGRY AND WANTING TO EAT!!! I explained about the amino acid supplement, which we think has been crucial in keeping Autumn as healthy as she has been, and I felt that he just dismissed me.
Here's the good part...
When I asked Dr. Moron if he had worked with individuals who had SMA, he told me of course he had, and lots of them. I scratched my head, since this disease is fairly rare, the chances of him seeing lots of SMA kiddos is probably slim to none. I then asked him if he worked with kids who had neuroMUSCULAR diseases. He very quickly replied that of course, he worked with many kids who had neuroLOGICAL diseases. Very very different--I didn't call him on that one either, I just wanted to see where this was going. I then asked him if he had worked with kids who had muscular dystrophy (I think he was getting quite irritated by me at this point!), and he said, 'of course, of course, many many kids.' I asked, 'well, what kind?', and he didn't answer that question.
There are over 40+ types of muscular dystrophy, some are very different than SMA, and a doctor who treated any of them would have known that. It took all that I had not to walk out on this SOB. If it's one thing I can't stand, it's being lied to. For a professional physician to do it, it's inviting a lawsuit.
Anyway, he looked at Autumn, then brought out his prescription pad and wrote scripts for the various tests that he wanted her to have--including some for celiac disease and allergies, neither which she has any indication of. For one test, intubation would be required, as a scope would be put down her throat and into her stomach to get a sample of the stomach lining for testing. I told him that under NO CIRCUMSTANCES that we would allow Autumn to be intubated for a test like that, given the risks of anesthesia, and he just looked at me with a puzzled (aka dumba**) look on his face. Again, if he was familiar with SMA, he would understand why we would not allow this.
Finally, he told me that he would send a nutritionist in, of course to 'educate' me in what I needed to do. He left, and I cried.
The nutritionist came in, WASHED HER HANDS, and sat down. She was so nice, and admitted that although she was familiar with amino acid formulas and the types of individuals who needed them, she had never had any experience with a child with SMA. I told her exactly how we feed Autumn, how she eats, what she eats, how darn long it takes, what we struggle with, etc. She told me that Brian & I are doing a good job in offering her different foods, and thought that she didn't appear to have any problems chewing and/or swallowing. She did think that Autumn's appetite was a problem, just like our Dr. Dagnew did. I told her that we would not be coming back to the office, and would seek a referral from our MDA friends for a GI doc after they come back from summer camp. She said that she was sorry that she couldn't help more, but insisted finding a doctor that we were 100% comfortable with
...and based on what she gathered from us and from seeing Autumn, she recommended a g-tube placed proactively using laporoscopic (sp?) surgery.
our search continues for a good GI doctor familiar with SMA kiddos who washes
his or her hands. Too much to ask??? Bet our MDA friends will find someone.
June 19, 2008: Okay, I guess I'll send this one off before the baby alarm sounds!
Today we went to go see Dr. Dagnew, armed with a record of everything that Autumn ate and drank this weekend. She took the card, looked at it, looked up at me, then looked at the card again, and shook her head. Uh oh. She was shocked that Autumn actually ate so little! I told her that that was normal for her, except that before she drank her Vivonex/Naked juice as well, and that was what was putting a little weight on her. She asked me about how we were feeding Autumn, about choking issues, about swallowing, and her consensus was that it was just her lack of appetite which was the heart of the problem--and that is part of the disease which we aren't able to control. She did tell me to get in touch with a GI doctor as soon as possible and make an appointment to discuss getting a g-tube placed. She hates to think that we are at that point, but agrees with me that it is best to be proactive rather than wait until we HAVE to have it done, when Autumn would need more invasive treatment, and spend more time in the hospital.
We talked a long time, and I told her that I would insist on a doctor/surgeon familiar with SMA, and willing to do the procedure laproscopically (sp?), rather than have her fully intubated, since there is less risk of her with the anesthetic. I also told Dr. Dagnew that I didn't want the GI doc to send me on my way after telling me to feed her Pediasure, whole milk, and just leave her alone to eat when she's hungry. Dr. Dagnew agreed, and told me that when I make the appointment, to call her back with the doctor's contact information, and she would send him a letter and Autumn's records explaining that we were using an amino acid supplement and would not attempt anything milk-based, as that was what caused Autumn to fall off of the weight chart between the ages of 1 and 2. Can you believe this??? I have talked to numerous families in the same situation, and one of the biggest hurdles they face is doctors brushing them off if they don't try things the 'traditional' way. I just hope we are able to land in the office of a GI doc who is as good as Dr. Dagnew. If not, this Nazi SMA mommy will just keep shopping!
Of course, starting yesterday, Harrison came down with a little cough. Last night Aaron and Autumn started coughing. Autumn woke up around 1:30 and wanted the CoughAssist, and I mentioned that to Dr. Dagnew today--and of course she was coughing in the office a bit. Dr. Dagnew got out a pulse ox, hooked her up to it, and found that her sats were normal, 97-98. Whew. She listened to her lungs, and found a slight rattle, which she said were the beginnings of bronchitis, and told me how great it was that I brought her in, even if it wasn't for that! Autumn was prescribed an antibiotic, and we were told to keep up the CoughAssist treatments as needed and do Albuterol nebulizer treatments before bedtime and in the morning as needed if she is coughing while sleeping. One more pat on the head, and we left.
So Friday Autumn has an appointment with a GI doctor in Southfield. I called Dr. Dagnew's office and left the contact information so that she could fax Autumn's records. I'm keeping my fingers crossed on this one, and hoping like hell that this man/woman is as understanding of Autumn's issues as Dr. Dagnew is.
keep you posted about the other kids next time (doing great, both of them!!!)
and try to get some more pictures up soon.
June 19, 2008: Okay guys, I think this will be a hard one...
Tomorrow, Autumn has an appointment to see our beloved Dr. Dagnew. This woman has been our family's pediatrician since Harrison was 2 years old, and we love her to pieces. She was quick to act when she noticed Autumn wasn't doing what a baby should be doing, and led us straight into the office of a very talented pediatric neurologist--then to our MDA friends. When Harrison had severe breathing issues, she had enough faith in Brian and I to allow us to treat him at home, rather than have to send him to the hospital and worry about who would take care of Autumn and then 7 week-old Aaron. She was very concerned when Autumn fell off of the weight chart at age 2, but trusted me to research the best diet for a child with type II SMA. When I sent her information, she actually read it, and patted us on the back for informing her of things that she was not aware of. She has called us personally at home a handful of times, just to make sure that we were doing fine, and the kids had what they needed. From what I have heard, very few doctors are like that, and many are just plain arrogant, inflexible, and unwilling to listen to the ideas and wishes of the parents. I trust this woman with the lives of all of my children. She's earned it.
Tomorrow we are going in to see her regarding a g-tube for Autumn. Autumn has not always been the best eater, and lately it has been a struggle to get her to drink her Vivonex juice, let alone eat anything. She doesn't choke on food, she is able to chew just fine (she ate a little Snickers bar this evening), she just doesn't get hungry. Dr. Dagnew told us this at her 3 year-old checkup. She expends more calories than a child without SMA because it takes more effort to move, and yet she isn't up bouncing around, running, and doing all of the things unaffected kids do to work up an appetite. It's a catch-22, I guess. At this point in time, Autumn has been almost freakishly healthy, and isn't losing any weight, but I don't want to have her do an about-face. We have struggled to find a nutrionist who is familiar with the needs of kids with SMA, but one of my MDA friends did give me the name of an individual, who I will be contacting this week. I don't want to leave any stone unturned, but I don't want to waste time with someone who is unfamiliar with the amino acid diet, and pushes the Pediasure. We've also tried little 'tricks' to get her to eat, among them:
leaving her alone with a plate of food for her to eat when hungry--doesn't work, she just never gets hungry
feeding her favorites only--she prefers cheese, which constipates, and isn't very adventurous when it comes to eating
pretty plates/utensils--did work, for awhile, but the novelty wore off
buffets where she could choose her own stuff--still works sometimes, but this is impractical, and I can't be a short-order cook
feeding her like a baby--very time-consuming, and developmentally inappropriate since she is 3 and is certainly able to use a fork and spoon
faces' made of various stuff--works okay, but she just has a few bites
eating in the stander--okay for drinking, but I get nervous about choking; this is how we get her to drink most of the Vivonex
Aaron and Harrison eat--she wants to feed Aaron her food
small frequent meals--again it is very time-consuming, never know when she is hungry (hardly ever), and family revolves around Autumn's food
Okay, see what I mean? I am a member of a wonderful chat group, among which are many parents of kids with SMA II who have feeding tubes. ALL of them say that they have helped improve their kids' lives, and made them healthier. I have requested information from them, and they have sent me pages and pages of information regarding their experiences with g-tubes, doctors, and other issues. Suzanne Williams, my Vivonex diet friend, is at a conference this week, but I will also be contacting her regarding doctors and hospitals in this area who have performed g-tube surgeries on children with SMA.
We are worried that if Autumn gets sick, she will lose weight that she can't afford to lose, become weaker than she already is, and have a more difficult time fighting off the sickies. If she doesn't have a g-tube, she will have to be fed through a tube shoved down her nose and into her stomach, until she is strong enough for g-tube surgery. That scares the crap out of me, and more than one parent that I have talked to has been in that same position. We don't want to put Autumn through that, and want things to be on OUR terms--we want to choose the doctors, the surgeon, and timing the surgery for when she is as healthy and strong as possible. We want to work with people who are familiar with children who have SMA, and adhere to the amino acid diet, which has helped thus far to keep Autumn healthy.
When Suzanne first talked to me about g-tube surgery a month after Autumn's diagnosis, it really freaked me out. Something like that seemed to me that SMA was winning, and it was just another thing that set a child apart from others as being even more 'different'. I'm sort of shifting my beliefs now--things like g-tube surgery, cough assist machines, braces, standers, etc., are tools used to fight this disease. Kids, even type IIs, would die without them. Most likely, Autumn would use the g-tube at night, for the majority of her calories. She would still be able to eat, but the pressure would be off, and she would be happier. She wouldn't be as constipated as she has been, which we think is really holding her up on potty training. She would 'fill out' a little bit, and feel more comfortable when she is standing or sitting--no more red marks on her butt if she isn't positioned correctly. We would be assured that even if she doesn't eat breakfast, dinner, whatever, that her body and brain would have what it needs to grow--SMA kids are unusually smart, remember, and she'll need that to outwit her parents when she is a teenager.
I'm sick with grief that this is even an issue for us. I'm comforted that we are
in a place where we can find the BEST doctors for our daughter, but it doesn't
change the fact that this is a bitch of a disease. I will fight it with
everything that I have. As much as I can control, IT WILL NOT TAKE MY AUTUMN.
I love you,
P.S. Okay--just wanted to say after all that, Happy Father's Day to Brian. This man has stuck with me through everything, and has put our family first no matter what. Through hell and back, Brian has given love, patience, and kindess to our family. Whenever I need something, he is there. He is selfless and listens to me even when I know that inside he is screaming at me to shut up. He works so hard, and allows me to stay home with the kids, and supports every decision 100%. I don't know if very many men like this exist, but I am proud to say that I have one of them. He is a wonderful husband and the best daddy. I love him more than he will ever know.
June 12, 2008: Hi all. Things have been going very well here as far as Autumn and her brothers not being sick, but we are struggling to get any food into Autumn. She doesn't seem to have any swallowing/chewing issues, she just doesn't like to eat. We've tried bribing her, leaving her alone, fixing favorite foods, and nothing is working. She is 3 now, and it takes longer (and is more frustrating) feeding her that my 10 month-old. She does drink 1 pack Vivonex daily split up into 2 doses, mixed with Naked Mango juice. For the last 4 days, she won't even take that much. I have talked to her very supportive pediatrian, who allows us to experiment with the AA diet with her blessing, after seeing her fall of the weight charts with a milk/meat based diet. I am reluctant to seek formal advice from a nutritionist, as I have not found one who is aware of kids with SMA and their particular issues (although I would certainly go if this person could be found!). I don't want to spend hours in yet another doctor's office only to be told to give her Pediasure and leave her alone, that she'll eat when she's hungry. Been there, done that, didn't work
She weighs 26 pounds and is tall for her age. Right now, she is healthy, w/o any history of pneumonia or severe colds. Brian & I are doing some research and investigating options regarding g-tubes, things to be aware of, doctors in the Detroit/Metro Detroit area who are familiar with these issues, etc. I'm going to schedule an appointment with her pediatrician to see what she says, but in the meantime, I am searching for any and all advice, personal experiences, doctors, WHATEVER you can give us to help make this decision easier and in Autumn's best interest. Again, she has been in amazingly good heath, and we don't want to have to make any big decisions such as this one when she is in the hospital, scared and upset.
so much. Sorry this is a long one!
Wendy Persinger, mom to 7 1/2 year-old Harrison and 10 month-old Autumn (SMA-free) and 3 year-old Autumn (SMA II)
May 30, 2008: Hi all. Nothing huge here, but I was told this morning that my kids have a new baby cousin! Elizabeth Naz Persinger was born a little after 9 am this morning to Brian's brother Michael and his wife Elif. She was 6 lbs. 11 oz. and 19 inches long. Brother Alexander Emre just turned 2. I haven't seen any picutures yet, but can't wait until some are sent!!!! Congratulations guys!!!!!!!!
Now for my kiddos...
Aaron went to the pediatrician yesterday to get that yucky on his finger looked at. Dr. Nagappa said that it was indeed an infection, and wanted to drain it. She had me hold Aaron, brought two techs in, and whipped out this HUGE needle, after wiping the finger off. EEK!!! Of course, Aaron was just mesmerized by the book one of the techs was holding, and surprisingly didn't flinch, squirm, or even cry. The doctor poked the finger a few times, then squeezed all of the gook out. Yucky, yucky, yucky. It was pretty darn disgusting. She then put some antibiotic ointment on it, and after struggling to get a big bandaid on such a little finger, Aaron was as good as new. She listened to his lungs and checked in his mouth after I told her that he had a VERY runny nose for the better part of the day, but said that everything checked out, and he didn't have anything worse than say, a little runny nose. We got a script for Keflex to take for the next ten days, and were sent on our merry way. My little wiggleworm managed to pull his new bandaid off in about five minutes, so after we got home, I put a baby sock over his hand and secured it with medical tape. No more pulled-off bandaids, and his fingers will stay clean(er) when he is crawling. On June 9, we go back for a follow-up, and then to a picnic with Autumn's preschool group if everything is okay.
Oh yeah--Harrison has the sickies. Sigh. I don't think that it will turn into anything horrible, but yesterday he said that he had a sore throat, and just sat like a lump when he came home from school. He had a bit of a temperature before bed last night and again this morning, so I kept him home from school. He spent part of the morning watching a video, and the other part watching some construction equipment level out the front yard. Now he's in his room resting and reading while the little kiddos are napping. I think that this will be rather short lived, but I'll have him take it easy for a day or so.
Aaron's nose is POURING, which is also very disgusting. His face is so chapped, but he hates to be wiped off. More yucky stuff. No fever or anything for him, just this nasty runny nose. Could be worse, I guess, but all the face-rubbing is really making him unhappy.
of course even though Autumn is still sickie-free, we are doing extra cough
treatments as a precaution. Poor thing, everyone else gets sick, and she gets
more stuff done to her! Well, it's worked before, so we'll stay with it.
May 28, 2008: Hi guys. We have been busy this week! On Tuesday, Autumn had a checkup with Dr. McCormick and all of our friends at MDA. It's hard to believe that it has been two years since we have been going there! Wow...
For starters, Autumn met with the pulmonary doctor. Not too much to report there, except that we told him that she has not had any problems, with the exception of a cold which was fought off with the CoughAssist. :) :) :) Autumn sees Dr. Toder at Children's Hospital every six months for follow-up, so the pulmonary guy didn't need to spend too much time with us.
Next we saw an occupational therapist, who asked us a bunch of questions, mostly about self-care. Autumn is able (when she wants to) to feed herself, but she is extremely limited in this area due to muscle weakness. The OT asked us if we needed anything in the way of equipment, and I put in an order for a shower trolley to hold the bath chair that we currently have. This would make it easier to shower Autumn--no bending over--and we would be able to roll her from the shower to her room to dress and dry her. For now, I lift her off of the shower chair onto a towel that is on the toilet. She holds on to me while I dry her, then I carry her to her room to be dressed. The trolley would eliminate some of the carrying, which would be easier on the back. So anyway, if all goes well, we may have the trolley in 3 months.
A physical therapist came next, and remarked that for a child with SMA, Autumn seemed to be doing extremely well, and was getting GREAT physical therapy (thanks Barb and Heather!!!!). She noted that her AFOs--little leg braces--were getting a bit on the tight side, so she recommended having those replaced before to long. Otherwise, she said that we are doing great, and didn't need her!
A resident came next, and he was a cutie--Autumn made up to him very quickly, and told him all about her new blue sandals. Dr. Matt had Autumn move her feet, lift her arms, and do all sorts of little things. Again, he remarked on her good muscle tone and lack of stiffness, which is unusual for a child with SMA. I was very very happy.
Dr. McCormick came over later with Matt and another resident to look at Autumn. She had Autumn hold out her fingers so that they could see the slight tremors which is common for kids with SMA, and then had her stick out her tongue--slight tremors there too, but neither bothers Autumn. Autumn was weighed, and we found out that she was now 27 pounds, which is a gain of a little over a pound since February! Still a lightweight, but Dr. McCormick said that whatever we were doing with her diet (no milk, not much meat/eggs/cheese and supplementing with Vivonex in Naked Juice) was working for her, and we need to continue. I showed her a copy of Autumn's latest bloodwork that was done in February, and she was very happy that nutritionwise, Autumn is getting everything she needs. She said to keep up with the calcium supplements, and told the residents that all of the patients who were non weight bearing should take some sort of calcium supplement. We told her that constipation was a constant problem if we didn't add Miralax to her juice everyday, and she said that as long as we were on top of that, Miralax was fine, and we should continue with that as well. She doubled the amount of Valproic Acid that Autumn was getting to 2 mL twice a day, which really surprised me. We're to work up to that amount over 4 days, then after she has been on the full dose for 2 weeks, take her in to have a blood draw to see if everything checks out. We haven't seen any drastic changes since she has been on VPA, but she has continued to improve on balance and stamina, so we'll see what happens with this new dosage.
Lastly, Dr. McCormick gave high praises that we have been using the CoughAssist and have been able to keep Autumn healthy--not only out of the hospital, but off of antibiotics as well. Again, most kiddos with SMA are hospitalized 3+ times a year for respiratory issues, and many have twice that number of doctor's visits. We have had neither. The last doctor's visit was a well-child visit for Autumn, and before that was one for constipation and one for the fracture. She told the residents how we were an example of how prevention (using the CoughAssist and being careful about intentionally exposing her to sick people) can and does pay off. I was so happy.
We did get to meet with another family whose boy, Lucas, was 4, and had SMA type I/II. He had a g-tube, and couldn't sit unsupported or even hold his head up. His daddy was holding him, and I was talking to his mom about ramp vans--they had one and wanted to have it converted. Lucas was adopted from Lebanon when he was an infant, and this family wasn't aware that he had SMA until he was just over a year old, like we did with Autumn. He has the same powerchair, but with a different seating system and joystick, but isn't able to use it as much since the family has no way to transport it. (The Koala weighs over 200 pounds, and it is impossible to lift up and throw in a van without a lift or ramp). Diala, Lucas' mom, said that he was doing reasonably well now, but recently was released from the hospital after being in for SIX MONTHS!!!! Yikes. I don't remember all of the details, but I cannot imagine what that family had to go through. Anyway, UI kept talking to Diala, but my mom took Autumn over to where Lucas and his dad were. Lucas kept telling his daddy, 'hug, hug,' and his daddy finally figured out that he wanted Autumn to come and give him a hug! Mom wasn't sure if that would be okay (germs & stuff) so she had Autumn blow Lucas a kiss. Lucas grinned from ear to ear, and Autumn was happy that she made a new friend. Diala told me that Lucas can operate his own laptop computer, and is able to read. She was asking me about the MDA telethon, and our MDA friend Denise assured her that she would be contacted when they were scheduling to be on TV. We're going to do that too, and MDA Julie will try to get us on the list to film a spot that will run throughout the weekend. We planned to do that last year on August 1st, but I happened to go into labor that morning, so Brian had to call the televison crew that were planning to come out to the house to film and cancel. We won't have that issue come up this year, and with the new house it will be great for everyone to see all of the things that Autumn can do. Plus, I will give MDA all the plugs we can!
A few days ago, we noticed that Aaron had this little blisterlike thing on his finger. None of us recall him pinching or poking it, so we had Dr. McCormick look at that too. She said that she had no idea of what it was, and it got bigger since Tuesday, so tomorrow morning I'm going to take him in to have it looked at. It should be an easy appointment--I only have ONE kiddo to take since both Autumn and Harrison will be in school.
So that's it for now. I can't wait to see MDA's report from her clinic visit this time. I love those guys. The doctors are so good with Autumn, and everyone actually listens to you--all of your questions are answered, and you never feel like you are pushed to do anything you aren't comfortable with (like flu shots in our case). The Vivonex diet is new for Dr. McCormick, but she is completely supportive on what we are doing with Autumn, and has even referred another mom to talk to me about it!!! How cool is that???
I'm happy for now that we're doing all that we can. I still wish that a cure
would be found for this disease, and wanted to cry when I saw Lucas--this little
boy who could never eat (SMA stole his ability to swallow years ago), and had
almost no strength of his own, but at age 4 could read and operate a computer.
It makes me so angry, but also so determined not to take things for granted, and
to love and enjoy every minute that I have with all of my kids, while at the
same time fighting like hell to help groups like MDA raise money to find a cure
for this disease.
May 21, 2008: Hi everyone. I'm home and the two little kiddos are asleep. Harrison will be home in about 30 minutes, and rather than clean up (which I should be doing!), I'm here at my beloved computer instead!
Today we were asked by our MDA friend Stephen to make an appearance at Outback Steak House for a lock up. This is probably the sixth event that we have done--basically we walk around the restaurant and talk to people who are doing fund-raising for MDA. Autumn drives her Big Blue all over the restaurant, and I share our story with the people who are making calls and are raising money for MDA. It's fun, and for now, Autumn seems to enjoy it. Stephen thinks that it helps when people actually meet with a family who is serviced by MDA, so they are aware of what MDA actually does, and how families benefit. Of course, I LOVE to talk, and will do anything to help MDA raise money, as they have bent over backwards to help us. Everyone was so nice, and loved to see Autumn get around. She was so good, especially after the waitstaff gave her her own little bowl of cheese, which she carried on her lap and nibbled on. (Cheese is strictly rationed, so this was a great treat for Autumn.)
Last week, Aaron had his 9 month-old well baby checkup with Dr. Dagnew. He is long and skinny like the other two, weighing 19 pounds 10 ounces (50th percentile), and was 30 1/2 inches long (95th percentile). The nurse who measured him came in for a redo, since he jumped up from the 75th percentile in height at his 6 month visit! Everything was fine, of course, he just GREW! Developmentally, he is doing fine. He crawls, claps, feeds himself, and bounces. It's such a contrast to Autumn, who started physical therapy when she was nine months old since she was so delayed physically. Autumn loves playing with Aaron, and it doesn't seem to bother her that he is able to crawl and pull up when she can't. She loves to hold him and give him bits of food from her plate that she is supposed to be eating. Of course...
More later. I really should TRY to get some stuff done.
14, 2008: ...so for us Tuesdays are so tiring! Autumn has school in the morning,
then comes home to take a nap for a few hours. Harrison comes home by 3:15, does homework, and changes clothes. I wake up Autumn (and maybe Aaron too, if he's asleep), get some baby food together, and head to the bowling alley with all three kiddos plus Harrison's friend Bethany for
their league games. Tonight Harrison was jumping all over the place, Aaron was extra
(no nap=extra adrenalin), and Autumn kept trying to drive Big Blue with her eyes closed, so she kept bumping into things. It made Brian & I crazy. At home, Harrison and Aaron were starving, so both of them had to eat again after eating once at the bowling alley, and Autumn had a
time-out for biting. (Can't figure that out--she's been taking hard nips & nibbles lately from our arms and shoulders.) We finally got the kiddos to bed around 7:15, and I got on the computer to check my email.
Lily died from SMA. No warning or anything. She was almost 7. It
sucks, always reading these stories about parents losing their babies to SMA.
Amy, Lily's mom, also lost her first baby, Nathan to SMA before Lily was born. I emailed her when I was pregnant with Aaron regarding choices in prenatal testing for SMA--she had CVS done with Lily, so I figured that she was the one to talk to. So I haven't personally met her, but you sort of feel connected, having children with the same disease, and talking about issues that pertain to you both. The only difference now is that my babies are here, and hers are not.
It makes me sick, it makes Brian sick, and I hate hate hate this disease. I hate again that it keeps killing kids--even ones like Lily (type I) whose SMA appears to be stable, are 'relatively' healthy, able to go to school, and drive a powerchair. I can't imagine when Autumn is older what she will think when she finds out that someone her age died of the same disease that she has. How in the world will I explain that to her????
I got some information in the mail today about our Congress voting on federal funding for SMA research and treatment--the SMA Acceleration Act. When I have time, I'll go through it, and pass along any information.
Now, it is 8:33, and all of the kids are in bed. Autumn is not
She is putting her Elmo underwear on Blue (from Blue's Clues) and singing the ABCs. I'm sitting here at the computer, crying, just happy that she is here, and letting her sing for as long as she wants.
28, 2008: ...so after a pretty good week, I turned on the computer, and my inbox was absolutely flooded from my SMA Support chat group. I opened it up, and another little girl died. The disease won. Again. I hate this. I hate that my baby is a member of this group and SMA could very well possibly take her too.
Skylar was 7, she's dead, and her mom and dad won't be able to hug and kiss her goodnight tonight. Yes, she was probably at the more severe end of the spectrum where the prognosis isn't often as good, but no child's life should be cut short at that age. Ever. It's horrible, and I am so sad for this family, who obviously did everything humanly possible to make sure that their daughter lived as long as she did, and had the best life possible, given the circumstances.
I am so grateful that we are doing so well, but the grief never goes away. I don't sit by my daughter's bedside when she is sleeping and cry anymore like I did after she was first diagnosed, because chances are she is going to wake up and call out for me to come and get her up. I try to be a good parent, make her behave, teach her right from wrong, and do everything in my power to keep her as healthy as I can so that I will never have to go through what these parents are, and that Autumn will be happy and get along well in this world just like any 'normal' person. I don't feel sorry for myself, and I don't feel sorry for her--I just hate this disease with everything that I am, and am waiting for the day when I find that one doctor that can cure SMA for us and for all of these kids so that there won't be anymore cough machines, vivonex, BiPap machines, pulse oximeters, braces, spinal surgery, g-tubes, fights with the insurance company, and funerals for those kids who the disease took away from their parents.
It sickens me that because of SMA, Aaron can do more physically at 8 1/2 months that Autumn has EVER been able to do. I can pick up Aaron under his arms, bounce him on my knees without giving him any extra support, watch him sit up, and put him on the floor crawl. Today he pulled up onto his knees after he was done napping in his crib, and I was so proud. I am beyond grateful that he was spared from having SMA, but I ache for Autumn. She can sit, and even push herself back a little bit when she is on the floor, but she can't get into the sitting position by herself. When you lift her, she must be held around her back, and lifted up from under her butt--not under her arms as this may cause a fracture or dislocation. When she is laying down on her bed, and she wants a sit-up hug, I have to put my hand underneath her head to lift her, otherwise her head falls back just like a baby's does. She doesn't eat very well, doesn't seem to ever get hungry because she isn't doing as much physically, and sometimes seems to have a hard time chewing. In the morning, before school, I have Aaron in his feeding table, and Autumn in her Tumbleforms chair, and I feed them both, just like babies. It takes about half an hour just to feed them both. Aaron is almost 9 months, but Autumn is THREE!!! With any other kid, I'd just let it go, figuring they usually eat when they're hungry, but with Autumn I can't do that since she wouldn't eat at all if I did, and I don't want her to have to get a g-tube. So she gets her Vivonex in Mango Juice, her flaxseed oil for extra calories, her calcium supplement (she can't digest the proteins in milk very well), and I painstakenly spoon yogurt, whatever fruit of the day she'll eat, or cereal into her, trying at the same time not to turn it into a battle where feeding will be more difficult than it already is.
So I'll do therapy, I'll give her the cough treatments as often as she needs them, I'll fight with the insurance companies to get medicine, equipment, whatever. I'll reasearch the latest treatments, talk to parents, and help others who are new to this game. And I'll take her out, show her that the world is a pretty fun and interesting place, and give her all the opportunities that Harrison (and soon Aaron) have so that when she is older she'll learn how to navigate the world.
I have a great life--three wonderful kids, and (excuse the cliche) Prince Charming for a husband--and I love them more than anything. I can't imagine what my life would be without them. I went into kiss Harrison tonight and cried again. He is 7, the same age as Skylar, and I can't imagine her parents not being able to kiss her goodnight anymore. I would go to pieces without my family.
Thanks for all of the love everyone. SMA has indeed taught me so many things, and overall has made me an even stronger and tougher person, but the price to pay is absolutely horrible. I wish this disease was GONE and no family would ever have to go through what some do at the expense of this disease. I have it so good, even with all of the stuff that we have to deal with.
Thanks for listening. Sometimes I have to share the not-so-good stuff too.
27, 2008: Hi everyone! It's been a pretty good week, and I just wanted to write a short little note to brag about my kids! Hope you don't mind...
Harrison: Harrison usually walks home from school when it's nice, and unbeknownst to me, the vice principal of his school is the one who walks the little group of kids from the school to the path between the houses where they cut through to go home. Anyway, Brian got a phone call on Friday from the vice principal who was just calling to tell us that she sees Harrison everyday when she walks home, and just wanted to let us know how polite and well-manned he was! She said that she enjoys talking to him and he is very respectful! WOW!!!! I was thrilled to death to get a phone call like that, and from one of the higher-ups too! We have always loved that school (it's Harrison's second year there) and now I see how invested the administrative staff is in the kids!
Autumn: Finally, finally, she is using the potty! We have been putting her on in the morning, sending her to school in a diaper (I think that they potty her there, but I'm not sure), then take the diaper off for naps and the evening around the house. She has not had one accident, and even woke up in the morning the other day with a dry diaper! YAY!!! She poops too, which I hope will eventually help to resolve this constipation thing. I'm going to try working on finding a seat insert for the bigger toilets that will be suitable for her, then try that. I'm keeping my fingers crossed that in a few weeks, she'll be completely diaper free!
Aaron: Man, this little guy crawls and scoots all over the place. Last night, he fussed a bit in his crib after he was put down, but he was trying to pull himself up and got his foot stuck in the bars of the crib! Guess we'll be putting the sides up and taking the mobile down. He is so cute, and has three teeth now.
Okay, that's it for now.... Desperate Housewives is on!
April 5, 2008: Hi everyone. Well, I guess the sickies have moved on for the most part, although Aaron has the boogery-est nose I have ever seen! Yucko. He seems to feel okay, except that he gets P*SSED when we dare to wipe his face off. Harrison missed Monday for school, but is fine now, and Autumn is back down to using her cough machine at night as a matter of routine, up from 5-6 times a day last weekend. Brian came down with a raging case of pinkeye mid-week, which a doctor determined was caused by an allergic reaction to something that he was exposed to. Ewwww.... He's doing the eyedrop thing every few hours but is fine now too.
Aaron turned 8 months old on Tuesday, and began crawling! He loves to go after the little tipper wheels on Autumn's green wheelchair, stick his fingers between the slots of the furnace vents, and pull open the doors to the cabinet under the television where we keep the videotapes. It's fun, but bittersweet since we missed that stage with Autumn (she never crawled). However, Autumn is really enjoying teasing Aaron--she scooted her wheelchair up to him, then slowing backed away as he was trying to get at the tipper wheels, saying, 'come and get it, you can't catch me...' The other day she was sitting in her room on the beanbag chair, and Aaron made a lunge for her beloved books. She yelled at Aaron saying, 'Don't eat my books, Aaron. NEVER NEVER NEVER!' It was too funny. Harrison is having fun too, but he plays gestapo--getting everything out of his way. It's so nice to have an extra set of eyes when mine are busy!
I'm excited about Monday. Autumn has the week off of school for spring break, and we are planning to meet Dr. McCormick, her MDA pediatric neurologist. I was asked to speak to a class of graduate students at Wayne State University in Detroit about what it's like to parent a child like Autumn, what sort of therapies and medical issues we are dealing with, and what our life is like. I am always flattered that we are even considered when something like this comes up, and love to educate people about SMA and what families like ours deal with. Autumn seems to like this stuff too--she is a real ham in front of an audience once she warms up.
Otherwise, that's it for now. I'm going to try to email some more pictures soon--Autumn's first day of school and her first little ponytail. Harrison's spring pictures from school should be in soon too, and of course those will be sent out as well.
Wendy & co.
March 29, 2008: We got hit guys. Harrison has his spark back, but he has this horrible cough. It seems to vary between the dry asthma cough & the wet one, so we are doing both Albuterol nebulizer treatments & regular cough medicine. If this is still going on by Monday or Tuesday, I'm going to err on the side of caution and take both him and Autumn in. I'll probably call the pulmonologist (sp?) Monday anyway. A few weeks ago, Harrison switched from twice daily Qvar to Flovent, and I wonder if that has any effects that I should be aware of. He really hasn't had any problems with asthma lately, but I did have him use the inhaler two weeks ago when it was cold and dry and he wanted to shovel the snow. He's sleeping now, but only after I gave him the cough medicine.
More worried about Autumn though. Yesterday (Friday), she used her cough machine SIX TIMES, and today we used it five--usually we only use it once as a precaution before bedtime to help clear her lungs before she sleeps. It won't hurt her, and she actually seems to feel better after we use it, but we have never used it that many times in one day. Something is going on, I'm sure, and I hope that we can stay on top of it and prevent it from snowballing into something serious. She is sleeping good too, and neither one of the kids is running a temperature, so I guess that is a positive sign. I got Autumn up in the stander this evening after her nap & a cough, so I know that she isn't feeling too bad. She ate like a little piggy at lunch, and even fed herself most of the food, which is a rarity. I'll probably wake her up for a cough before we go to bed, just in case.
I'm really disappointed because we are going to have to miss the bowling party that our friends are having for their son's fourth birthday. Andrew has muscular dystropy too (although not SMA), and uses the same chair as Autumn. They go to the same preschool, and play really well together. Andrew's mom and I have become good friends, and I really feel great knowing someone else that I can bounce ideas off of.
Oh yeah--Aaron seems to be fine, I just have a slightly scratchy throat, but Brian feels a bit 'off' too. Sigh. Still, I can't complain too much. All things considered, we have been EXTREMELY healthy and very happy.
March 28, 2008: Well, I guess that Harrison has his first winter cold--surprisingly in spring. Yesterday was pretty rough for him, and all he did was lay around the house and sleep (he's on winter break, thankfully, so he isn't missing any school). He went to bed before 6:00, and slept all night, but did need a dose of cough medicine around 9:30 or so. This isn't the 'asthma cough' that we're used to, but the sick wet cough.
Today he seems better, still coughing a bit, a really hoarse voice, but he does have his pep back, and wants to play. I'm hoping that this is the worst of it, but am so so so afraid for Autumn.
Yesterday she seemed a bit congested in the morning, so we gave her a good cough with the machine, which cleared that up, and sent her to school. Last night she was fine, but around 10:30 she woke up crying and actually asked for her cough machine--which is EXTREMELY unusual for her. Today there was a problem with the busses (tires were slashed at the bus yard) and we didn't send her to school. She sounds a bit junky, so we did some coughs again this morning, and will do so again before & after her nap. She has been in her standing frame for the better part of the morning, and I know that this will help her. Being completely upright is better for breathing, especially before a cough treatment then lying down for a nap.
Now, as much as I hate to say it, I will. For those who know me well, I have never been the 'germ phobe' type of mom. However...
Yesterday, I read on chat about a woman who took her 11 year-old son with type II SMA to a relative's house for Easter. That boy was exposed to a relative that was a little bit sick and on antibiotics, according to his mom. Well, on Wednesday, he developed a little cough, and yesterday, despite treatments, his mother called 911 after he was complaining that he couldn't breathe. The 911 team came & took him to the hospital for immediate intubation. The boy's mom was told that due to pressure from the junk in his lungs, the treatments, and muscle weakness, intubation was extremely difficult, and if she had waited any longer, he would have died. Needless to say, the intubation was successful, and after he was stable, he was airlifted to Utah (not sure where this family was initially, but I assume it wasn't too far), where he was seen by Dr. Swoboda, one of the country's leading experts on SMA.
So I guess that what I'm trying to say is this... If you are sick, either on or off antibiotics, medication, whatever, PLEASE do not come to our house. PLEASE do not invite us over to yours. PLEASE do not think that just a little cold won't matter. If you aren't sure about what is going on, PLEASE TELL US so that we can make a decision whether or not to stay at home. I've talked to the doctors and our MDA friends, and this is very serious. I don't want to be put in a position where we have to leave a situation, or worse yet, expose Autumn to something that could potentially be life-threatening. Harrison too--whenever Autumn does get a cold or runny nose, in the past she got it from him.
Yes, Autumn has not been sick. This is NOT the norm for kids with SMA. Most kids like Autumn (type II and III) are hospitalized an average of once or twice a year, and have to be treated for respiratory issues at least twice that. We have been so fortunate, and I am determined to keep it that way. As best as I can, I want Autumn to live as normal a life as possible, but we do have to take some precautions that parents of unaffected children do not.
If something happens to her that could have been prevented, I would never forgive myself. Kids get sick, I realize that, but what makes an average child miss one or two days of school could put Autumn in the hospital.
Again, I am just sending this message to everyone who usually gets my update letters. For some of you, it may not apply, but for others, please help us keep my kids healthy. I'm still learning exactly how serious this is, and am not liking what I hear.
26, 2008: Hi everyone! I've been playing catch up with some other things, so I haven't had time to update like I'd like!
For starters, Autumn started preschool on March 17th. She goes to a POHI school (for special-needs kids) and is in a curriculum that will prepare her for kindergarten in a mainstream classroom. On the first day, the bus picked her up in front of the house, and I took her home. Brian & I really struggled with that decision, but figured that it would be so difficult to get all 5 of us out of the house, including the baby, plus if Harrison was sick, etc. So...Autumn rode the bus the first day of school. I didn't cry--honest--that first day, but have teared up every day since.
Well, Autumn did not have any problem getting on the bus. She drove Big Blue on the platform and was lifted into the bus, then tied down by an aide. We hyped it up quite a bit, so she was more excited than nervous. She went to preschool at 8:10, and I picked her up at 11:30, anxious to hear all about her day.
After a happy 'HI MOMMY', Autumn got a scowl on her little face when I took her out the side doors where the school busses were. She looked at the line of busses and told me in her strong voice, 'no--I take the bus home.' Eek. I thought she would be glad to go home with ME!!! Well, I got her in the car, and asked her about her day, and all I got was, 'I like the bus.' I asked her what she did in school and got, 'I took school bus to school.' Sigh. Nothing came out about school on her first day, only the beloved school bus.
The next day was the same, except that she didn't look as disappointed to see me, but still wanted to take the bus home. On the third day, I asked the bus driver if she could be added to the route when the busses were leaving so that she could ride the bus home. Now Autumn is very happy. She likes school, and loves her bus.
Anyway, her teacher told me that Autumn adjusted to school very well. She didn't have any problems joining in with the other kids. She fit into the routine right away, and did wonderfully in her powerchair. Almost every day she brings home an art project or something she did. Harrison loves to ask her about her day, but he usually gets, 'dunno' or something like that. She does seem very happy to go, which makes me happy. I was thrilled to death when I saw that school. It's just like a 'regular' preschool, but with more equipment. I'm friends with another mom who sends her son there (he's a year older than Autumn, and also has muscular dystrophy) and she is thrilled to death with all of the stuff he's learned. We're still planning for Autumn to go to kindergarten where Harrison goes, and that is written in her IEP. She will be having 2 1/2 years of preschool, so that will hopefully help her in the long run.
Today we went on a field trip to a pizza parlor. The kids got to take a tour of the restaurant, get their own piece of dough to hold and play with, and eat as much pizza as they wanted. Harrison was off school for spring break, so he and Aaron came too. Everyone was so good, and Autumn had a great time. I met with Laura (whose son also goes to that school) and we got to talk while the kiddos were eating. Andrew also has a chair just like Big Blue, and Autumn insisted (very loudly) that she sit next to him. Andrew is turning four this weekend, and we are going to his birthday party at the bowling alley. Needless to say, both Autumn and Harrison are very excited.
Guess that's it for now. I'm in the process of revamping Autumn's website with more pictures and medical updates. It's been a very long time since I've done anything with it besides the journal. I'll let you know when it's done so you can come & visit!
More later. It's almost past my bedtime, and I have kiddos to chase tomorrow. Keep your fingers crossed for Harrison--he was fine yesterday, and this evening looked a little sickie and had one of those wet, yucky coughs. We have had to give hime extra asthma treatments this week as it has been cold and dry which aggravates it, but this seems like it may be more of a cold thing. I'm glad he is so good about washing his hands, and Autumn likes her cough machine.
20, 2008: I almost cried at the doctor's office. My baby, my sunshine, is doing so well. At her two year-old checkup Autumn was in good health, but frighteningly skinny. The pediatrician recommended Pediasure/whole milk, and I said no, but instead gave her some information to read on the amino acid diet, which she actually did (surprise!!!). We really began pushing Vivonex about eight months ago, and I'm convinced--absolutely convinced that is what is keeping her so healthy. Autumn just turned 3 last week, and we had her yearly physical. She gently tips the scales at 25 1/2 pounds, and is 37 inches tall BUT is on the growth charts after falling off at age 2. She went from being completely off the bottom of the chart for weight, to the fifth percentile--a huge gain for a child with SMA. Her height stayed consistent in the 75th percentile, and all of her bloodwork came back PERFECT. She was completely in the normal ranges for everything, protein, blood calcium, iron, EVERYTHING!!!! Dr. Dagnew has been and still is fully supportive of what we have been doing with Autumn's diet, and is in awe of how much the Vivonex supplement has helped her. She told us to keep doing exactly as we have been, and hopefully she won't see us until next year--at least with this kid!
Autumn does not follow the AA diet perfectly--we do not allow any milk, but we do let her have a bite of meat here and there, some yogurt, and cheese. She has one packet of Vivonex daily, divided up into two portions, mixed with 10 ounces each of Naked Mango Fruit juice. Autumn is not the best eater, but does like her juice/Vivonex mix, and I am convinced that without the Vivonex, she would not fare as well. She has not been sick, NO pneumonia, NO bronchitis, NOTHING that would put her in the hospital and rob her of what precious little strength that she has.
On March 2, we go to Dr. Toder again, this time with Autumn. When I took Harrison, she was impressed when I told her that Autumn actually liked using the CoughAssist machine, as was able to tolerate the pressures (you need to have it 'blow' in enough air and then suck it back out strongly in order to do any good and remove gunk from the lungs) that are recommended for kids with SMA. Again, I think that has really helped her stay strong, and kept her from getting sick. Of course, I have a runny nose, but am being vigilant about washing hands and doing extra cough treatments with Autumn.
So it's working--all of the diet stuff, cough stuff, physical therapy, etc. SMA still scares me. I don't know how fast this disease will progress, but I remember something that the neurologist told me when Autumn was first diagnosed. It was something that I really didn't want to hear, and it took me quite awhile to wrap my head around, and it still is always in the back of my mind, which sucks, to say the least.
One determination of how long Autumn will be here is how fast her SMA progresses before age three. Well, GUESS WHAT???? My baby is three , and there has been absolutely NO PROGRESSION thus far that anyone can tell. Yes, she has lost the ability to lift up her head while lying on her stomach, but that has been due to her body growing, rather than SMA progressing.
So hopefully Autumn will see age four, then five, and still be able to stay as strong and healthy as she has been. She will start preschool in mid-March, and then go to kindergarten in a few years at the same school with Harrison. We will make sure that she has the best powerchair so that she can do everything that the other kids do, and run as fast as they do, but never get tired.
February 13, 2008:
Most to update here, starting wth preschool!!! Autumn went to visit Johnson School, where she will be attending preschool in late March. This is a school for kids with special needs, but she will be with other kids who are higher-functioning (hate how that sounds, but don't know how else to say it). She will go four days a week for three hours, and ride the bus to school, with me picking her up. When I took her, she just went over to where the kids were, and made herself at home. I just hope that they put her next to the kid with the good appetite at snack time, so she'll learn from his example!
Autumn has been working with Heather from the TOTE (Teach Our Tots Early) program through the special education department for over a year. Heather came to our house and worked with Autumn weekly, doing therapy and exercises similar to what she does at clinical physical therapy. During the last few weeks, Heather tested Autumn in order to see where her strengths/weaknesses are. Gotta brag a bit on this one, so I'll share the results, Cliff-notes version.
Chronological age: 34 months at testing
Self care: 5th percentile/1 year, 10 months--low due to physical limitations, includes dressing, toileting, etc.
Personal responsibility: 95th percentile/3 years, 9 months--includes being aware of surroundings, initiating tasks, working on a learning task
Adult interaction: 99+ percentile/5 years, 7 months--separates easily from parents, attempts to make others laugh, follows rules given by adults
Peer interaction: 91st percentile/3 years 10 months--initiates contact with peers, cooperates in group activites
Self-concept & social role: 50th percentile/2 years, 10 months--shows pride in accomplishments, expresses ownership by saying 'mine', knows differences between males & females
Communication--expressive domain: 75th percentile/3 years, 2 months--uses pronouns, I, you, and me, answers yes & no questions appropriately
Communication--receptive domain: 99+ percentile/4 years, 1 month
follows three or more verbal commands, understands 'your' and 'my', responds to who or what questions
Gross motor: >1st percentile--able to roll over and sit unassisted, cannot make stepping movements when held upright, extremely low score due to physical effects of SMA
Fine motor: 91st percentile/3 years, 5 months--bead stringing, folds paper, tracing shapes
Perceptual motor: 98th percentile/3 years, 5 months--stacking cubes, imitating drawing of horizontal & vertical lines
Attention & memory: 84th percentile/3 years, 4 months--attending to learning tasks and not being distracted by surroundings
Reasoning & academic skills: 63rd percentile/3 years, 4 months--matching and naming colors, finding humor in events
Perception and concepts: 99+ percentile/4 years, 7 months--shorting forms by shape, recognition of differences between letters, identification of different textures, identification of objects when they are placed in a line
...so I guess that she is more than ready for preschool!
January 24, 2008:
Hi guys! On Tuesday I took Autumn for her checkup at MDA. We go every four months to meet with the equipment guy, physical therapist, pediatric neurologist, and our friends Julie & Maggie. We ordered two new parts for Autumn's stander, as she has had it for a year and a half, and is beginning to outgrow it. With the new center spar (where all of the other pads are attached) and extenders for the knee pads, we think that she'll be able to get a few years' more use out of it. No insurance fight there--we already have the stander, and stuff like that isn't really a big deal.
The physical therapist who evaluated Autumn was very impressed with how well that she is doing. The slight contracture in her left knee is GONE, although her leg is still quite stiff. The right knee is bent, but that was due to the fracture, and will straighten out over time. No signs of scoliosis yet--we're keeping that at bay due to all of the standing and great physical therapy at home. Yay!
Dr. McCormick was also impressed. THE DISEASE HAS NOT PROGRESSED THUS FAR, which is always great to hear. She was shocked that Autumn has never had any type of pneumonia, and has not had a cold this year. She did ask if we gave her the flu shot, and I admitted that since I had one in 1998 as was sick pretty much that whole winter, that I did not feel comfortable having any of my kids vaccinated. She admitted to me that the same thing happened to her, and she doesn't get the flu shot either! That was the first time a doctor has every said that to me. Dr. Dagnew really recommends it for patients with neuromuscular diseases (although she lets me decide) and Dr. Toder the pulmonologist chastised me for not giving her the shot when we went to see her back in the fall. So for now, I feel that we made the right decisions, but of course will revisit this when Autumn starts school and/or if the flu ever makes the rounds in our house.
We were given the thumbs up since we have the CoughAssist (http://www.coughassist.com) machine and use it with Autumn twice a day. Dr. McCormick is increasing the dosage of her Valproic Acid and Carnitine to see how she does. In two weeks, we have to go for a blood draw, and if things are fine, then we'll stay with the new dosage until we go to MDA again. I'm going to try to get the meds through mail order, but am biting my nails on that one, as they lost a script for Harrison's asthma medicine, which almost landed him in the hospital. Dr. McCormick also wrote a script for pedatric Vivonex, her amino acid formula, as she thought Autumn was doing well with that. She has gained 2 pounds in 4 months, which is excellent for her.
To recap, kids with SMA types I and II have problems with digestion and absorbtion of proteins such as those found in milk and meat. With Autumn, she wasn't gaining weight, and had this funky smell all of the time. On the advice of another mom who has a child with SMA, we cut out all milk, and only give her meat on occasion. The majority of her protein is met with Vivonex, a short-chain amino acid formula. After two months on this diet, Autumn gained four pounds, in contrast the the pound and a half that she gained in the six months prior! What we found was happening was that due to diminished muscle mass, Autumn was having trouble breaking down the protein, and thus using up more calories than was actually in the food itself. The stink was a byproduct of that--some other kids with more severe forms of SMA also experience greater fatigue and respiratory issues. I know that when we were moving, we didn't give Autumn as much of the Vivonex as we did before, and the stink was back, and she seemed more fatigued. So anyway, we are on our last box of Vivonex, and my friend Suzanne is dropping by with some more to hold us over until the script goes through.
We have to make an appointment with a pediatric orthopedic surgeon for an evaluation to determine if Autumn will need spinal x-rays and to establish a baseline for bone health. Kids with SMA will eventually develop osteoperosis (sp?) and scoliosis, and we want to hold off both for as long as possible. Standing helps both, as well as calcium supplements, but of course Autumn isn't jumping around like your average almost-three-year-old, and too much calcium can cause kidney damage.
BUT so far she is doing well, and we were assured that we are doing all that we can to help her and keep her healthy. Our MDA friends were so glad that Autumn actually owns her powerchair now, so that fight is over, but I had to tell them that our secondary insurance denied the pulse oximeter--again. Guess we'll look at other ways to get that. We go back to the pulmonary doc in February, and see what she has to say.
I hate hate hate that the insurance companies determine what type of equipment that we get even though we have good doctors who know what she needs. Pisses me off, and I don't have enough energy left for stuff like that.
Autumn and Harrison are both bowling on the Hot Dog Gang on Tuesdays. The love it, and Autumn has been completely accepted by the other kids on the league. The bigger boys help her with the ramp, and let her know when it is her turn to bowl. It's great--Brian & I can sit back with Aaron and just watch.
I'm just keeping my fingers crossed that Autumn will always be accepted like that, and if she's not, I hope that my daughter will have the balls and the strength to put those morons who don't in their place.
Sorry so long, but thanks for listening.
January 21, 2008:
Hi everyone. Sorry that it's been so long for an update, but either I fall asleep or am so busy with house or kid stuff!!! Anyway, we've pretty much settled in. There are still some things at the old house (which we haven't sold yet), so we're trying bit by bit to get everything over here, and get that cleaned up. Our realtor is going to put a lockbox on it to make showings easier, and at least with everything gone we won't have to worry about anything getting stolen.
Love love love the new house!!! Aaron has his own bedroom now, and with the exception of the weekend when he had a horrible stuffy nose, he is sleeping much better. Last night, he went down around 7, woke up around 2 for a feed, and was down again until 7 this morning!!! Brian put up window treatments in his room, which I think helped, as we have a very bright streetlight that just shines in his window. The new window treatments are a chocolate brown, and we plan to paint his walls a light blue. My mom got him this cute little outfit in those colors, and we really like that combination. His furniture is dark too, so we think that will look very nice.
Autumn got some new white furniture for her room--two short little bookcases, a dresser, and a captain's bed with a bookcase headboard and drawers underneath. It is a bit higher than a regular bed, and is better for changing her. We picked out a pink camouflage bedspread with striped sheets. We're planning to paint one wall a hot pink, and light pink for the others. She seems to love it, and it's a bright, happy room.
Harrison really surprised us--we've been trying to find some decent truck and/or garbage truck stuff, but haven't hand any luck. At Target, he saw some Transformers sheets and comforter, and decided that he had to have those. They're a bright blue, and he seems to really like them. Of course the comforter hangs over his bed a bit, since he has one of those loft-style beds. Not sure what he's going to have as far as wall colors and window treatments, but we'll cross that bridge when we come to it.
The kitchen (of course) is Doughboy. The counters are blue, and match perfectly with all of my Doughboy stuff. We're planning on putting blue panels above the sliding door by the kitchen table, and chocolate brown & black wooden blinds on the windows by our big sectional in the family room area. We ordered a short-shag rug that is brown, black, turquoise, and blue for the family room, and that should be in by the end of this week.
We're painting the walls in our front room some sort of purple, with taupe panels on the windows. That is were all of our bookshelves are, so guess we'll be looking forward to moving all of those when it's time to paint. Sigh..it sure was a lot of work getting them up there!
Our bedroom/bathroom has a celestial theme. The bathroom rugs are a cranberry color, and Brian picked out some cherry-colored wooden blinds for the window. The panels for the bedroom windows are cranberry, and match with the comforter. Eventually we'll plan on painting the walls gold or a peanut color.
That's it about the house. The kids really love it here. Autumn can move around in Little Purple easily on the first floor, and when she is in the stander, we can move her wherever she wants to go. Today she was moved from room to room, as both her and Harrison were looking at construction equipment working on the house next door. Harrison's asthma has been better, and he hasn't had any extra treatments since we moved in. We think that packing up stuff and moving things around didn't help any.
Tomorrow Autumn has another MDA checkup. I'll let you know how that goes. She actually likes going to see all of her friends, and is very cooperative when she is being looked over. In February, both her and Aaron have pediatrician appointments, and she and Harrison go to the pulmonologist. We also have dentist appointments for all of us who have teeth, as well as the other usual stuff.
Autumn also began bowling on the Hot Dog Gang league with Harrison last week. It was so great--they didn't have the teams yet when we went in, and three other little kids became so excited and wanted to have Autumn bowl on their team with them! She did very well. Skore Lanes has a ramp, and Harrison moves it up to the lane when it is her turn, and puts the ball on top where she can reach it to push it off. She knows that she gets two turns, and claps when she gets a strike or a spare. Guess we'll have quite a few years where we go to the bowling alley on Tuesday nights! Harrison has been bowling since before he was three, and STILL isn't tired of it!
More stuff later... Last week I lobbied to get Autumn's secondary insurance to pay for a pulse oximeter, and her teacher through the school district completed her exit evaluation so she can start preschool.
Busy, busy, busy, but I love it. I just wish Aaron wouldn't grow up so fast. He's almost six months already, and is such a chunk!