Journal for 2007
December 26, 2007:
Hi everyone! I just got a wonderful phone call today, and was told that my brother and his wife had a beautiful baby girl--Katherine Josephine (haven't seen a picture, just assuming about the 'beautiful' part). :) Jeff and Kerry are thrilled to have a girl, since they already have a son, Alex, who will be 5 in April. Mom and baby are doing very well, and Jeff is over the moon!
I'm so glad to be able to share this with you guys, and can't wait to get some pictures!
About us...
Tomorrow, we are 'officially' moving into our new house! The movers are coming in the morning, and our refrigerator will also be delivered sometime after 10 am, so we'll be able to make a fresh start in our new house. Of course, we haven't sold this one yet, so we'll be making many many many trips with stuff over to the new house.
Harrison was pretty sad today, as I was taking drawers out of his room, and he didn't like seeing all of his things uprooted, so we went to the house together after loading up the van with his stuff and garbage trucks. I think that he felt so much better just the two of us putting his things in his room. Tonight he seemed so happy and filled up some more boxes with books. Tomorrow I'm taking Aaron & Autumn to the pediatrician's office for an Aaron appointment. I figured that would be easier to get them out of the way rather than shuffle around the movers. Autumn doesn't have a bedroom set yet, but we ordered one, and it should be here sometime after the 28th.
So, I'll be off for maybe a week, and then I'll send more pictures! Hope everyone had a great Christmas and a Happy New Year!
Another plug for MDA--Aaron's SMA DNA testing bill came in, and was about $800. Insurance picked up some, but we were left with a $364 bill. Yikes. Money is tight here, due to the house stuff, but I called MDA, and we were told just to send it along to them, and that it would be taken care of. I cried again. Please, donate to MDA if you are able. There is a link at the bottom of Autumn's SMAngels website. We're doing the Stride & Ride event again, and I want to be able to help MDA like they have helped us. Autumn goes again for a checkup in mid-January, and I am going to hug all of those people again.
December
12, 2007: Hi guys! We've been so busy this week. For starters, we closed on the new house on Friday, and started moving stuff in! We're hoping to be completely out of the Rusty Street house before New Year's, but we have more than enough boxes to really keep us busy. The kids seem to love the house. We took Autumn's Little Purple over there this week, and she is able to go absoluely anywhere on the first floor without much effort since we have vinyl & hardwood floors rather than carpet. We still need to get a lift for the stairs and a ramp for the door in the garage, but that should come (shortly, I hope!!!) after the actual move. Once we get the ramp, Big Blue will come into the house, and I won't have to do as much lifting. Another thing that is wonderful--Autumn's stander will be able to be moved from room to room on the first floor, so she will be able to help out in the kitchen and look out the different windows of the other rooms. We can't do that here since we have a sunken family room, and the stander is almost impossible to lift with her in it!
Got more good news, and I cried at this one.
After closing, I was changing Aaron's diaper, and Brian came into the bedroom saying that he had a message for me to listen too. It was an H.R. person from Cooper Standard where Brian works, saying that the third-party arbitration worked, and our almighty insurance company was going to pay for Autumn's
powerchair.
I got a letter Monday from Health Design Plus confirming that, and cried some more. The letter stated that it had been determined that the chair WAS medically necessary and appropriate for Autumn.
I won't say exactly what was going through my head after I read that... It's not very nice.
Today Aaron had his four-month checkup. He weighed in at 14 pounds 14 ounces (50th percentile) and 26 1/4 inches long (95th percentile). He is two full inches longer than Harrison was at that age, and 12 ounces heavier! He rolls over both ways, and is able to stand up holding onto someone's hands. Dr. Dagnew was very happy with how he was doing, and pronounced him in perfect health. She gave us the okay to start him on cereal, which we did tonight. Needless to say, he was not at all thrilled. I can't wait to see the pictures! After about two bites, he began making yuck faces and turning away from the spoon. Again, this was so unlike Harrison, who began grabbing the spoon, and when the cereal was gone, began fussing for more! Even our Autumn was a bit more enthusiastic. Two shots :( and we were sent home to come back in February.
I have three rolls of film to take in, and will email pictures when we get those back. I can't wait to show you the house!!!
December
8, 2007: Hi everyone. I'm sending out a flyer for Stride & Ride 2008--the proceeds benefit MDA. We did this event last year, and had so much fun. Autumn had a demo powerchair, and was just learning how to use it. We raised over $1700 dollars for MDA, and hopefully this year we'll raise more.
MDA has bent over backwards for me, for Autumn, and for our family. I hate to be a part of this 'elite' group, but have met so many friends because of Autumn's disease. Without these guys, I don't know if we would have half of the equipment that she needs, received the best medical care and advice, and met so many wonderful positive people who understand what we are going through and most likely I would go crazy. (Of course, sometimes I wonder...)
I'm ending this with yet another journal entry that was written on September 19 of last year when Autumn was 1 1/2 years old. It was six months after her diagnosis.
September 19, 2007: Today I cried so much. I am angry at SMA. I am unhappy to think that no matter what I do Autumn may die anyway. I want her to be happy & healthy & have a good life. I want her to be treated like everybody else. I want people to look at HER and not all of that stupid equipment.
I don't want a minivan with a lift. I don't want to be scared whenever she gets sick. I don't want to have to stay home because it's too hard to take her out.
I love my kids. Harrison is so sweet and good. Autumn is my baby sunshine. I don't want to see her lying in a f*cking casket.
Some nights I go to sleep & I think what if I kiss her for the last time? And I kiss her anyway & touch her sweet face & I always always tell her I love her.
I'm not strong tonight. I'm sad, scared, hopeless.
I just turned 31 and need to be strong.
That's why I do this. Maybe someday no other parent will have to go through what we are. It sucks.
November
23, 2007: Today was NOT FUN to say the least. Brian was home, and we figured that we'd do some stuff around the house before moving. WRONG. Autumn has been constipated (gross stuff--sorry!!!) for the last week, and last night she kept wimpering and saying that her tummy and butt hurt. I felt so horrible, listening to her wimper & not being able to do anything. At 11 pm Brian went out for some BabyLax suppository, which is what all of our other SMA parents use for their kids. Didn't work as well as we thought, so today we went to go see our friend Dr. Dagnew.
She fit us in at 11:15. We left with a prescription for MiraLax, a food supplement that bulks up the stool, and instructions for use of a Fleet's baby enema. Yuk. Needless to say, Autumn was a real trooper, and REALLY enjoyed the M&Ms afterward. Now she is in her stander, and we're going to get her and the other kids ready for bed shortly.
Dr. Dagnew said that she though Autumn's 'problem' was not diet-related since she doesn't get too many of the foods that cause constipation. Brian & I are really careful with that, since muscle weakness from that damn SMA can exacerbate that problem. She thinks that lack of exercise has more to do with it, and MiraLax will help with things. It's non-addictive, and she can take it as needed. Geez--I'd never thought I'd run a pharmacy in my kitchen! All of Harrison's asthma stuff, Autumn's liquid medications, the Miralax tubs, and the various dispensers really take up a lot of room. It sucks...
For the exercise stuff, guess we'll just do what we can. Autumn uses her stander almost every day, and she pushes Little Purple around, but she can't jump and run like other kids. Brian & I play with her on our big exercise ball, but of course it's not the same.
I hate this crap. Autumn's CoughAssist machine arrived the week of Harrison's birthday, and she has been wonderful at using it. (See CoughAssist.com for more information on this thing.) We do it at night, and she is cooperative as long as she 'coughs' her animal friends first, and then gets marshmallows afterwards. Since kids with SMA have very weak & shallow coughs, this machine is a must for her. It has a soft mask that is attached to a box with a long hose. We put the mask on Autumn's face, and the machine blows air into her lungs, then sucks it out again, simulating a cough. For many kids with SMA, this machine has kept them out of the hospital, and for those with type I, it has saved their lives. Glad we have insurance though--we're renting this thing to own, and the cost per month is more than what my first apartment was.
So needless to say, I'm not doing too well. One night last week, I went into Autumn's room to kiss her goodnight and saw all of the stuff--the cough stuff, medicine boxes, Vivonex boxes, little purple braces, and just cried. I hate SMA, I hate dealing with this. I hate that everything has to be 'special' just to accomodate this stupid disease. I would do absolutely anything for ANY of my kids, but SMA is just taking over everything.
Of course we're thankful for all that we have, especially that all of the kids have been so healthy, and Autumn is stronger than many kids with this same disease. I can't wait to move into the house, but even the joy of that is clouded over with the modifications that we must make for SMA.
As soon as a cure is found for this disease, my Autumn will be the first in line to get it.
November
2, 2007:
My sweet roly-poly Aaron is SMA-free. I cried all day when I found out, partly out of relief that we won't have to fight this disease in another child, and partly out of sadness that we still must stay strong and fight for Autumn, as well as all of our other little friends with SMA.
It still sucks.
October 24, 2007: Here's a good one for you...
This morning I put Autumn in front of PBS kids and Aaron in the swing when I went to take a shower. Well of course the fussing doesn't begin until I have a headful of shampoo. I finished up as quickly as I could, and ran out to see which one was fussing and why. I thought Autumn had fallen over, but there she was, sitting on the floor propped up against her blue pony pillow--but with my round laundry basket over her. She put the basket over her head and body, but didn't have the strength to push it off, and was just howling and mad. It was soooo funny. I would have taken a picture, but she was really unhappy.
Today we went to the pumpkin patch with her school program. We dressed her up in her Halloween costume (a Carebear, the blue one). Needless to say, she probably got the most attention out of any of the kids there, between the costume and Big Blue. Other kids had costumes, but none of them had a powerchair! She went on a hayride and loved it. Aaron wasn't too thrilled--it was COLD outside, and during the ride he had one of those monster poopies that crawled out of his diaper and up the back of his white sleeper. Yuk. We cut it short, but Miss Heather promised Autumn that she would bring her a pumpkin next week when she came to visit.
Harrison went to the pulmonary doctor on Monday. Of course he happened to have a cold, which masked the other symptoms that he was having. His lung function test was decent, and the doctor didn't hear anything out of the ordinary that couldn't be attributed to a cold. I'm glad that Harrison's wheezing/coughing is better, but it's sort of like taking your noisy car in for a repair, but it won't make the noise when it's being looked at. Anyway, we need to keep up with the Albuterol treatments before exercise, and start another inhaled drug (forgot which one) twice a day. We go back in three months to see how he's doing. He hasn't been asking for treatments, but today he was so wheezy after school, I made him have one.
I called yesterday about Aaron's DNA test for SMA, and our MDA Maggie doesn't have the results yet. She said that they may take up to 6 weeks, and it has been four since his test. So we just have to wait, which I AM NOT very good at doing.
I also got this book today--Chicken Soup for the Soul, Children With Special Needs. I read while Aaron nurses, and since he nurses all the time (and it's proving to be a great book) I'll probably finish it up in a day or so.
I'm getting sick of moving boxes and packing stuff up, but things are going very well on the house, and it looks as if we'll close in early December! I drove by today, and saw that there were big boxes in the garage--probably our cabinets!!! No bites on this one yet, but we're working on that.
October
19, 2007: Hi all. Sorry that I didn't update sooner. Aaron had his two month checkup on October 12. He had a little cold, but Dr. Dagnew said it was just in his face, nothing more. He weighed 12 pounds 13 ounces (75th percentile) and was 24 1/2 inches long (95th percentile). He was so squirmy that she had a difficult time checking him over! Everything is fine, and she, like the other doctors/therapists that have examined him, are pretty sure that he is SMA-free. However, we will know for sure by next week when the results from the DNA tests will be in. Aaron rolled over from tummy to back when he was only 25 days old, and continues to do so (Autumn was early too--at 11 weeks). He also is able to keep his body in a straight line when held horizontally, and bears weight on his legs and feet while held in standing. Autumn has never been able to do either. So we'll see, but much to my relief, I'm not very worried. He's really starting to calm down now. He's sleeping better, only waking up to eat and then going right back down. He's reaching for toys, chewing on his hands, and smiling all of the time. He looks just like Harrison did when he was a baby, but with blue eyes. We think he's gorgeous.
Dr. Dagnew did point out that Aaron tends to tip his head to the right, but we just need to do some simple stretching and encourage him to look at toys held to his left. Nothing major, but probably due to the fact that he was such a big baby and squished that way before he was born. Otherwise, he is meeting all of his milestones, smiling and making those sweet happy baby noises. We initially weren't going to have him vaccinated until the DNA results came in, but I would rather space the shots out than have them all at once, and would like to have them complete before he starts school. He got two, and surprisingly, Dr. Dagnew let me pick which ones. We chose Prevnar since pneumonia could possibly be a big issue with Autumn, and DTaP. Next checkup for Aaron is December 12, provided that there are no issues before then.
Dr. Dagnew liked seeing Autumn in her powerchair. Autumn drove up to the table where Aaron was, and told Dr. Dagnew, 'That's MY baby.' I filled her in about the insurance not wanting to pay for the chair, and she thought that was bullsh*t too.
Harrison is going to see Dr. Toder at Children's Hospital for a pulmonary exam. He has been using his albuterol nebulizer 2-3 times a day--not good for a normally healthy kid. We're not sure what is going on, but Dr. Dagnew thinks that it is probably asthma. He has never had any problems before, and we're never around any type of smoke due to Autumn's SMA (and it's really disgusting), so she was left scratching her head. Dr. Toder saw Autumn last month, and we really like her, so I'm glad that is where we need to be. Just hate driving all the way to Detroit--last time it took me a hour and a half...
The best part..... Our house is up, the brick is on, the driveway is poured, the drywall is up, the bathtubs and showers are installed, and the garage door is on. We're so excited. We're looking to close sometime in December. No offers yet on our current house, but we got a new realtor, so keep your fingers crossed. She did a great job on the website, which we didn't have when we were listed with the first realtor. If you know anyone, send them our way!!!!
Autumn scared us yesterday. She was a bit crabby in the morning, but when I took her to therapy, all she did was just sit. Barb gave her a hug, and noticed that she was unusually warm. She took her temperature, and found that it was 103!!!! Yikes. I took her back home, gave her some ibuprofin, and put her to bed. Last night, her fever was 100.3, and today she was back to her old self, except that she took a very long nap. No congestion or anything, just fever and lethargy. We've all been fighting colds here, so hopefully things are all gone now. Harrison was complaining about pressure in his ear and being tired, so I guess that is one more thing for the doctor to check on Monday. Overall, these kids have been so healthy. Autumn especially--everytime we go to MDA for a checkup, they are amazed that she had not had any issues with bronchitis or pneumonia that are so common with kids with SMA.
October 4, 2007: Okay, this weekend I thought I was going to spit nails. On Friday I received a letter--our second--from the insurance company, denying payment for Autumn's powerchair. The first letter denied the chair on the basis of Autumn's age, saying that 'a two year old cannot be independent nor is their judgement developed enough to handle thy type of wheelchair without constant supervision.'
Of course you all know that Autumn plays in the yard with her powerchair by herself while I take naps everyday...
The second letter denied payment based on the fact that it is not 'medically necessary for the treatment of patient's illness or injury.' The letter also made reference to a physician-to-physician discussion, this being a five-minute phone conversation between an almighty insurance rep. while driving in his car, and Dr. McCormick at MDA clinic when we were there for our last appointment.
Assholes (sorry--bad word).
Autumn's pt about hit the roof. She is working on yet another appeals letter, and will share it with me before it goes out. I'm scared sick that the repo man will come and get the powerchair, but both Barb and MDA Maggie assured me that this is highly unlikely. Still, I don't know how we got this thing in the first place if it hasn't been paid for.
Okay, now for some irony...
The Saturday after I got this letter of denial, I received a letter of confirmation from the same almighty insurance agency the the pulse oximeter and cough assist would be both covered in full. In the envelope was also a comment card, so I could presumably write how happy I was and mail it back to them. Funny, there was no such card in the denial letter...
More gripes---Harrison ran out of his Albuterol for his nebulizer. TWO WEEKS AGO I mailed in the refill prescription. Harrison was sent home from school today coughing and wheezing, so I called CareMark to find out what the hold up was. Of course, I spent an hour plus some on the phone, and could not get a real person. I navigated the computer stuff the best I could, and apparently, there is no record of this prescription being sent out, or even being ordered!!!!!
I called the doctor's office, and they called over a script to the pharmacy, which Brian picked up. We did two treatments with Harrison tonight, and he seems better, but still pretty wheezy. I am fit to be tied with this insurance stuff. I don't have the time or energy to spend all day on the phone fighting with these people, and it is so frightening not to be able to reach a live human being when your kid needs medicine.
I have a headache. This stuff sucks. Brian & I were officially 'dumped' by our realtor, which was fine, since we weren't impressed with him anyway. Our house is listed with Real Estate One, and Amy put together a nice little pamplet and is working on a website with the information and pictures on it. We had to lower the price by quite a bit, which means we'll just do a bit better than break even, but since we're saving so much money building the new house rather than gutting one out, I guess we can't complain too much. The new house is BEAUTIFUL--it's just like what we wanted, and will be perfect for Autumn to navigate in her powerchair that I'm not going to give back.
Oh yeah--Aaron still fusses, but he is doing better. At 7 weeks, he weighs 11 pounds 10 ounces. Next week he goes for his first well-baby checkup. We'll let you know how that goes.
Thanks for listening.
Sepember 10, 2007: Hi guys. Sorry that I’ve been so long in updating. Aaron is the fussiest thing, and it’s really hard to type & nurse at the same time. Too bad Brian had to go back to work!!!
Anyway, we had the best time at the telethon last weekend. Our ‘spot’ was very late, and we didn’t get home until after midnight, but the kids seemed to have so much fun. Autumn kept getting into the peanut butter cups on the table, so Maggie had to hide them from her. Harrison would tell anyone and everyone about his fascination with garbage trucks, and Aaron was passed around constantly. On Monday, we went back again to visit with everyone, and to get some lunch (nibbles and cake). Ms. Galaxy let Autumn wear her crown, which was so heavy that Autumn could hardly hold her head up. She was so nice, and offered to mail us a crown for Autumn since she didn’t have one! We also were asked to speak at an MDA benefit at the end of September to UAW workers. (I love doing stuff like that—we just tell our story and why people should donate to MDA. This is about the third speaking engagement that I’ve done, and it’s actually pretty fun.) Before we left, the kids got to sit in a fire truck and be photographed with the firefighters. Harrison didn’t want to get into the truck at first, but did after Autumn went.
Today Autumn had her first Playground Fitness class. It’s like a Gymboree class at the Taylor Recreation center. Harrison did that for almost two years before preschool and loved it. Today the kids threw balls, jumped through hoops (I helped with this one) and played with a big parachute. Autumn loved it. The kids were all between the ages of two and three, so it was perfect for her. Aaron was good too, but insisted on being fed 10 minutes before the class ended. Autumn was so good, and after class, she waited in the hall while he ate without running all over the place. When we were going to go, she said ‘more playground fitness’, and tried to get back into the room where we were before.
Autumn is so funny—she’s learning all of these new words: right now (which she says all the time & very loudly), mine, little one, new one, whole thing, go bye-bye… She and Harrison play together all the time, which is helpful when I’m doing things with Aaron. Harrison even made a little ‘pocket’ for the back of Little Purple to put stickers and other stuff in.
Harrison began second grade this week, and so far has been very disappointed. He likes his teacher and likes his friends, but says that he doesn’t want to do any of the baby work since he learned all of that last year! He’s still waiting on the first issue of ‘American Waste Digest’, the garbage truck industry magazine to arrive in the mail. My mom got him a copy of an issue a few months back, and it’s dog-eared. Funny how most kids read stuff like Highlights, but mine likes anything about garbage trucks!!
The house is coming along great. It’s completely framed in and covered with home wrap. We are so excited about everything, and hope that we’ll be able to move sometime early next year. We haven’t had any bites on this house yet. As soon as our contract is up, we’re planning on firing our realtor. Apparently, he moved to Texas, although he still plans on coming back here once in awhile, and didn’t tell us. He isn’t giving us updates like we requested, and we have only had two calls for people who want to see the house—one where we weren’t showing anyway, as we just listed the house & were working on the kitchen, and the other was a no-show.
Grrrrr…
Otherwise, I think things will work out. So far, so good.
More pictures later. I have a bunch, but need to scan them in.
August 25, 20007: Hi guys. Well, we went to the doctor's office for another Harrison visit this week. I kept my fingers crossed the whole time, and hoped for the best. Since Wednesday, Brian & I have been giving him nebulizer treatments every 4 hours around the clock, as well as the two other meds that were prescribed. Well, Dr. Nuguri hooked him up to the pulse oximeter, and his 'numbers' hovered around 95-96. Yay!!! Not what they should be, but plenty enough to keep him out of the hospital. Now, we only have to do the nebs every 4-6 hours for the next week, and don't have to wake him up at night. That was absolutely exhausting, and I don't think Harrison cared much for it either, although he was very cooperative about the whole thing.
We still don't know if this is asthma or allergies, but the doctors don't think it's from the cat (which I've had since before the kids were born) or any type of smoke, since we're not around that at all. Harrison hadn't gone over to anyone's house or rolled in the dirt or grass lately, so that's not it either. Hmmmm... We were told to have him take it easy for the next few days, and then he will be able to play outside and ride his bike like he normally does. Brian & I can see that he's much better too--the little 'spark' is back, so to speak.
Autumn had her last follow-up x-ray for her knee today, and we are happy to say that she is completely healed up!!! We have been standing her up for an hour a day, and she is doing everything that she did before w/o any pain. She does have a slight contracture in her right knee that wasn't there before, but we were told that should straighten out with time, standing, and stretching.
Aaron, we love him to pieces, but he is driving us crazy!!! He is so gassy, which causes him to fuss almost constantly. He doesn't seem to be hungry when he's fussing (I'm nursing), but back arches and squirms when you hold him. He screams in the car, which is extremely unnerving, and it seems that I can only eat with two hands if he is asleep (rarely for more than 20 minutes at a time) or being held by my beloved husband. Autumn was like that too, but worse. Aaron doesn't spit up at all like Autumn did, and is able to be calmed down by being in the Snugli or sometimes the swing. It sucks. He's gaining weight fine, and doesn't seem to have reflux since he's not spitting, so Dr. Dagnew said that it is probably just one of those things. We use Gripewater like we did with Autumn, which helps some, and baby probiotics, but miss having a quiet baby like Harrison! Autumn outgrew the fussing by about 11 weeks, which means that if Aaron is the same, then we only have 7 or so more to go.
Sigh...
I'm just so tired.
August 22, 2007: Hi guys. This week is proving to be a crazy one. My mom left on Sunday, and since Brian's back at work it's just me and the kids. I don't think we're doing too bad, but Aaron, won't stop fussing, Autumn won't stop pooping (really gross, sorry), and Harrison has this horrible wheezing & coughing that just won't go away.
So...
I took Harrison to the doctor's today since this wheezing/coughing thing has been going on for quite some time. She hooked him up to a pulse oximeter, and his number was 89 (normal is 99-100). Yikes. She gave him an albuterol treatment, then another with oxygen, and the numbers went up to 97. We went for a chest x-ray, then he was given another treatment w/o oxygen, and the numbers went back down to 89-92. Crap. She said that many doctors would recommend that he be hospitalized, but since she knows that Brian & I will be proactive, she will allow us to treat him at home. Brian & Harrison are out a Binson's picking up prescriptions and a nebulizer, so we'll start treatments as soon as they get home. Harrison needs the albuteral in the nebulizer every three hours around the clock for the first 24 hours, and then 4 hours until Friday when we go see the doctor for a follow-up (what the hell, I'm up nursing anyway...). He was given an oral steroid, Prednisone, and an antibiotic. The chest x-rays didn't show any pneumonia, but Dr. Dagnew didn't want to chance it since in the early stages it doesn't always show up.
So, we don't know what this is, but Dr. Dagnew said that it's most likely asthma or allergies. Autumn is meeting with a pulmonologist September 18, so if we like her, then we'll make another appointment for Harrison to get evaluated. If asthma isn't the issue, then he'll have to be tested for allergies.
Funny thing is that he isn't complaining of anything but a cough which keeps him up at night. He's eating like he always eats, and is playing like usual, so this has been just a shock to us. Dr. Dagnew said that he will be better by the weekend if we are vigilant about the treatments, which of course we will be.
I just want to SCREAM. We have so much other stuff to do with the house, moving, the telethon, etc. It makes me sick that something else is wrong with one of the kids, and I hate having all this other stuff hanging over my head. Of course, that which does not kill us makes us stronger, right???
August 20, 2007: Hi guys! I got some great news from our MDA friends! We’re going to be on television live on Sunday September 2—the first spot as the MDA telethon goes on the air! I talked to Julie today, and she asked us to open the telethon in Detroit. It will start on Channel 20 (here) at 9:30 pm, which is late for the kiddos, but we will be put up in a hotel so that it will be easier for us to get to and from the studio! How cool is that??? I sent some pictures to Maggie today, and they will do a photo montage like they did last year. I am so excited!!!!
Things are well, different, around here. Aaron is fussy, but I figured that if I carry him in the Snugli, he quiets down and goes to sleep most of the time. He was given the thumbs up healthwise by our pediatrician, and passed his hearing test with flying colors. We went to the hospital for the blood draw for the DNA SMA testing, but were told that they needed too much for a sample (4-10 mL) to get from a newborn. Hopefully we’ll be able to go in again in a month or so, but it is driving me crazy to wait that long. I asked Julie about that when we talked, and she is going to check to see what they can do. I sure want to get this done before Harrison starts school and brings home sickies.
Autumn’s leg seems to have healed, but we are going to have one last set of x-rays taken this Saturday. So far she seems to have bounced back very quickly. She is able to stand up in her stander for an hour a day without knee immobilizers, and does not seem to be in any pain.
Construction began on our house, and next week (weather permitting) they will begin to frame the house. We’re hoping to be in by early spring at the latest. I dread the thought of moving all our stuff, but can’t wait to get in this house—it will be so much easier with three kids, and Autumn will be able to get around by herself.
August 8, 2007: Hi
everyone! Boy, this week has gone by fast! Today I took Aaron in for
his first pediatrician’s appointment. Dr. Dagnew knew we were going to
have another baby, so she was expecting us!
Aaron weighed 9 lbs. 7 oz., down from his birth weight of 10 lbs. 1 oz. Nothing to worry about, but Dr. Dagnew did want us to have him weighed next week when we went to The Birth Place to complete his paperwork and call her with the numbers. She was amazed that he was born the way he was, but remembered that Autumn was born the same way. She went over Aaron, and pronounced him perfectly healthy. She was surprised that his color was so good (bright red since he was screaming and did NOT want to be messed with), as I’m nursing and many breast-fed babies’ skin takes on a yellowish tint from jaundice during the first or second week. His hips, spine, heart, and lungs were fine too. Since Aaron wasn’t born in a hospital, we do have to take him in for a hearing test next week, which isn’t really a big deal. She said the results are more accurate anyway if you wait, since the fluid has had time to drain out of their ears. She also told me that it was good that the cord wasn’t cut immediately after delivery, since the iron-rich blood was able to go directly into him, rather than be discarded. (I have heard and read this before, and still wonder why hospital personnel cut the cords ASAP.) She said that many newborns have iron deficiency around 2 months of age, and oftentimes this is why.
I talked to my best MDA friend Maggie
the other day, and she is sending me a prescription so that Aaron can have the
gene deletion test for SMA. This will tell us if he is completely
SMA-free, is a carrier (like Brian & I) or has the disease. The test
itself is a simple blood DNA test, but the results won’t come back for four
weeks. Since the disease is genetic, Aaron has a 25% chance of having the
same type of SMA as Autumn, a 50% chance of being a carrier (not a problem
unless he has children with another carrier), and a 25% chance of neither being
a carrier or having SMA.
I’m scared to death. Autumn has
been doing so well, all things considered, and even though there is a 75% chance
of Aaron not being affected, the wait will be horrible. Looking at Aaron
and holding him, I can’t tell whether or not he has SMA. Autumn didn’t
show any signs of anything being wrong until about 6 months or so, when she
didn’t put any weight on her legs when held upright. Even then, it
wasn’t until she was 9 months old that the doctor prescribed physical therapy
(helped a bit, but not as much as would be expected in a child with
run-of-the-mill developmental delays). Otherwise, she actually met her
milestones early—rolling over both ways by 3½ months, reaching, grasping,
lifting her head while on her tummy, etc. I was told by some parents of
SMA type I kids that they didn’t move much before birth and immediately after,
but that wasn’t the case with Autumn, and doesn’t seem to be the case with
Aaron either.
So anyway, we are thrilled to death that
Aaron’s here, and healthy, and beautiful, but SMA has its way of casting a
cloud over even the happiest occasions. I just wish that a cure would be
found for this disease, and no parent would have to go through this. It
sucks.
More pictures. We have two rolls
to be developed, and one roll to pick up.
July 27, 2007:
Hi guys. We’re still waiting for the baby to show up (the ‘official’
due date was last Sunday)! I went to visit Bridgett & co. again today,
and they said that all is well, and we should expect him to arrive any day now.
I feel all right considering how far along I am, but I’m tired of having to go
to the bathroom all the time. Today I took the kids out, and had to go
twice in just over an hour. Poor Harrison is getting sick of following me
to the ladies’ room!
Bridgett thinks that this baby will be 8
½ or 9 pounds, but of course it’s hard to tell. Harrison was 6’13”
and Autumn was 8’2”. I’m really not to worried as he’s been
head-down for months, and in a good position. Plus, being so low already,
Bridgett said that the birth may be shorter since he doesn’t have far to
travel. I’m hoping that’s true, anyway! Autumn was 8 hours
exactly start to finish, w/o any pharmaceuticals, and Harrison’s birth took 11
hours with Pitocin. Of course, I don’t want anything too quick—that
Jacuzzi tub was wonderful, and Brian wants to be able to ‘catch’ his new
baby boy like he did with Autumn. Keep your fingers crossed that I’ll
have the baby soon—I already have the stone added to my mother’s ring, and
don’t want to change it!
Autumn
had her follow-up appointment with Dr. Zeni after getting her cast off two weeks
ago. She has completely healed (after only 5 ½ weeks), with only a slight
knee contracture, and is able to stand up in her stander. We only put her
in for 30-40 minutes at a time, which is about half of what she did before, and
use these soft, Velcro knee imobilizers, but she is happy as a clam when she is
upright, and doesn’t seem to be in any pain when she is taken out. She
does want the imobilizers kept on after we take her out of the stander, so I
guess it must feel good for her to stretch her knees out a bit. We have to
go in one more time in August for follow-up x-rays, but that is just a
precaution.
The
powerchair is wonderful. Autumn has so much fun in it, and has mastered
opening doors with a power switch all by herself. It’s so funny when we
go out though—Harrison walks next too Autumn, Autumn uses this powerchair that
is bigger than she is, and I’m 9+ months pregnant, waddling after both of
them. People stare like crazy, and wonder what on earth I’m thinking!
At
least everyone is very nice to us, although last weekend this guy gave us the
worst pity look and then handed us a Jehovah’s Witness pamphlet about the
rapture. He didn’t look too happy, and I imagine that after reading all
that the pamphlet had to say (which I did), he probably wasn’t.
I
hate it when people look at us like that. Geez—we have so much that many
people who are in our shoes don’t have, and anyone who is around my kids knows
how happy they are. (Except when you mess up Harrison’s garbage cans
& trucks when he is in the middle of playing with them, or you can’t
figure out what Autumn tries to say when she really really wants something.
Then the sh*t hits the fan!)
Thanks for reading this stuff.
July 20, 2007: Hi,
everyone!!! Only two more days until my ‘official’ due date, but I
figured that I’d better get out of the house with two kids while I could!
Autumn was 9 days late, but who knows with this one.
Today, I took Harrison and Autumn to
Fairlane Mall. Harrison wanted to go to Auntie Anne’s, which has these
sour-cream-and-onion soft pretzels which he loves. (Last time we went I
bought him two of them, but today one was the limit.) After our snack, I
took the kids to the center of the mall so they could run around and play.
There were some small tables and easy chairs scattered around, which made me a
bit nervous since I didn’t want Autumn to hit them, but she really surprised
me. I even got brave, and made her powerchair go faster, which of course
she loved. I sat down and watched the kids for almost an hour.
Harrison hid behind one of the chairs, and Autumn squealed when she was able to
find him. They played tag and hide & seek, and I had never seen them
both so happy at the same time doing the same thing. Of course we got our
share of stares, but it actually was pretty cool seeing the faces of strangers
as they watched the kids. Autumn’s chair is FAST—her hair was blowing
as she was running around—and it wasn’t even set up to maximum speed.
She did a terrific job, and I didn’t have to jump up once to stop her from
running over anyone’s toes or hitting any furniture!
Of course I’m sniffing the whole time,
really appreciating the fact that we were able to get this thing, and my kids
are able to play like any other ones. It makes me so angry to know that
some of the parents that I talk to were denied a powerchair like Autumn’s
because their insurance companies either said that it was not necessary that a
young child have this kind of independence, or worse yet, that since the life
expectancy of a child with SMA was low that it wasn’t worth getting this type
of equipment—I know more than one parent who was told this.
How disgusting. Autumn’s
personality is really starting to come out, and it is such a joy for me to see
her doing things for herself, going where she wants to, and just being able to
play without waiting for Daddy or myself to put her somewhere and give her
something. We can’t wait for the house now, which will be totally
accessible for her. Brian met with the builders, signed the final papers,
and on July 30, digging will begin on the foundation. Barring any
complications, construction will probably be finished by March. I am so
happy that everything seems to be falling into place, and after the baby is born
and things settle down (yeah right), we will really work to get our house sold.
Keep
your fingers crossed for a safe and quick delivery. Yesterday I saw my
beloved midwives who assured me that all was well, and the baby could come
anytime. I feel good, but plenty stretched out in front, and get tired of
running to the bathroom all the time, but at least I don’t have heartburn,
sickies, or other stuff like that. I know I’m going to miss waitressing
though, and the pregnancy pity tips that come along with it!!!
More later, hopefully with baby pictures!!!
July 2, 2007: Hi guys!!! This week has been so much better. Monday we got Autumn’s powerchair, after only waiting 2 ½ months. David Silcox from Binson’s came over and set it up for us and adjusted the controls and the seating. Needless to say, Autumn was off and running in very short order! She had the loaner from March 1 until early April, and adjusted to this one in no time at all. The joystick was the same, but there were more buttons for her to push that made the chair do different things, which she quickly figured out. The chair has headlights, a play tray, a backpack, and a horn that she loves. Autumn knows how to adjust the speed controls (we have to watch that). She was going so fast around the backyard, that her cheeks were bouncing like she was on a jetski. Harrison was having so much fun chasing her. The kids played outside most of the day, and again in the evening. Harrison wanted to play hide-and-seek, so Autumn counted (putting her hands over her eyes and saying, “one, one, one.” We drove around to the side of the house and Harrison popped out from behind the garbage cans. It scared the life out of me, but of course Autumn just laughed.
When I told her that it was time to come in, she first tried to run away into the backyard, then cried when I steered the powerchair into the garage. I felt so bad, but since we don’t have any ramps going into the house, and the chair is over 200 pounds, she won’t be able to use it indoors. Little Purple is great, but just not as fun.
I got a call from the MDA neurologist saying that Autumn’s blood amylase levels are now stable, and we need to keep the dosages of Valproic Acid and Carnitine the same. Of course we wish that they could be increased, but we’ll take what we can get for now. I also told her about Autumn’s leg and plans for getting her up and standing, and she thought that sounded fine. Nothing else on her end, but we do have an MDA checkup that we need to make for sometime in August.
MORE good stuff—Brian and I went last night to pick out fixtures/furnishing/decorating stuff for our house!!! After this, all we need to do is meet with the builders to sign some more papers, and then construction will begin on our new house. We are so excited to finally have a place where all our kids will be able to get around. The doorways upstairs are going to be wider, Autumn’s room will have lowered light switches and a lowered closet bar, there will be a roll-in shower and lowered sink in the main bathroom, we’ll have a lift up the stairs and a ramp in the garage so she’ll be able to get her powerchair in the house, and the lower level will have hard floors so that it’s easier to keep clean. Plus, we chose all of the colors for our floors, counters, tubs, tile, cabinets, appliances (need to buy a fridge though—we didn’t want the one that came with the house), carpeting upstairs, and light fixtures. Moving is so much work, but at least we won’t have to redo anything since we’ve already picked everything out. The walls will be white, but we’re planning on painting a room at a time, starting with the bedrooms. Of course, we’ll send pictures during construction. Harrison can’t wait to see how a house is built, and Autumn likes construction equipment too.
June 20,
2007: Better
stuff this time guys!!! I have to thank all of you for sending me love, well-wishes,
cards, etc. This has been such hard
and frustrating week.
Anyway, between yesterday and today, I
spent more time on the phone than I have during the past month.
First of all, we got in to see a pediatric orthopedic surgeon today,
instead of July 11. Funny how this
happened--Autumn was at therapy, and one of the doctors at the clinic happened
to be going for a consult with this Dr. Zolts, and asked if she could share the
x-rays with him to get his opinion on the surgery/no surgery issue.
I hadn't yet heard anything from Dr. Zeni (who casted Autumn on Monday),
so I gave her the films. Turns out
after I got home with the kids from the physical therapy appointment, Dr. Zeni's
office called and wanted me to go to see Dr. Zolts at 3:30 today!!!!
I could hardly believe it. Brian
was home, so poor Harrison wouldn't have to go along on yet another appointment.
Autumn and I waited for quite awhile, but saw the doctor, who told us
that he had Dr. Zeni as a resident in med school.
He told me that Autumn should absolutely not have surgery, that her knee
was positioned in the cast as well as could be expected, was healing nicely, and
that the cast could come off in a week and a half!!!!
After it is taken off, the bone will be x-rayed, and if all is well then
she needs to take it easy for a week--no pt or stretching.
The week after that we can begin therapy, and after that, begin to start
standing!!!! He said that she would
be stiff and sore, but should be at the point where she was before the accident
if we took it slow. I wanted to cry
and hug & kiss this man.
More good news...
Last Friday, we were told that approval
for the powerchair was denied, and that it would be yet another 4-6 weeks until
we even had a delivery time set up. Well,
I called up all set go gripe at the powers that be, and it turns out that after
three more phone calls, and a few mixed messages, that Binson's will deliver
Autumn's brand-new permobil Koala powerchair on Monday morning!!!!!!!!!!!!!!!
I did cry that time on the phone with the lady who made the appointment.
David Silcox (who has been wonderful for us with equipment) is coming
over to set the controls and make sure that the seating is good for her, and
then we will be all set in that department.
I am so happy, and Harrison is too.
He gave me the strangest look when I got off the phone crying, but I told
him that Mommy was happy that Autumn would be getting her chair, and that the
two of them could play and run around in the park next week. Well, Harrison got this frown on his face, and told me,
"but Autumn can't go into the ice cream store.
There isn't a ramp, and it's not fair that she can't go in too."
He told me to call a company and send them out to the ice cream store
(which is right in the park) so that they could build a ramp for his sister.
Amazing. I still wonder if
this child is actually mine, and what I did to deserve someone like him.
Guess he takes after his daddy!!!! :)
Even more stuff...
Dr. Dagnew called yesterday too, and has
been in contact with a GIG. doctor regarding Autumn's nutrition. She still is concerned that she is underweight, and wants to
make sure that Autumn is getting what she needs.
She has ordered a panel of blood work (iron, calcium, blood lipids, etc.)
so when we have to have another blood draw to check the meds for MDA, we need to
call her and let her know so that Autumn won't have to be 'stuck' more than
once. After things settle down, we
are going to meet with the GIG. doctor if anything abnormal or unusual comes up
with the blood tests. Today, we did
get a wonderful letter from her, telling us that she actually read the paper on
SMA and nutrition that I sent her, and was impressed with Suzanne and the other
parents who wrote it. Can you
believe that??? More crying.
So anyway, we're doing better. Our house appointment is still July 2nd, and we are looking forward to that. Baby is due July 22, but anytime after next week is fine with me. Overall I'm feeling wonderful, but a bit stretched out in front. It is hard to carry Autumn with the cast on, and I have to be so careful of her hips at the same time.
I still hate SMA, I am scared to death of the thought of losing Autumn to this disease, or of the 25% chance that this baby may have it as well. Sometimes it seems that it's kicking our a**, but even when that is the case, I'm not going down without fighting. Never...
Thanks for the love, for giving me the strength when I need it.
June 25, 2007: Today was another bad day, at least most of it. I took Autumn in for a follow-up x-ray with the cast guy, and although her knee seemed to be healing nicely, we were told that since her leg was bent, the bone wasn't in the correct position and needed to be reset. Surgery was suggested, and of course I immediately asked if there were any other options. The doctor (nice guy, but forgot his name) then removed the cast, and he and I massaged the back of her knee for a few minutes, trying to get it as straight as we could, and then put a new cast on. Her leg is a few degrees straighter than it was in the first cast, but still not as straight as he'd have liked it to be. Another x-ray was taken after the new cast was on and dried, and hopefully tomorrow we will be shuttled to another pediatric orthopedist (sp?) at Children's Hospital to see what he says. Hopefully, the new cast puts the bones in the right position for healing, otherwise I know that surgery will be recommended again, which scares the sh*t out of me.
It's not the surgery, but the
anesthesia. For this surgery, Autumn's bones that were fractured would
need to be pinned in place, then after the bones are healed, she would have to
undergo surgery again to have the pins removed. I have talked to another
SMA mom, and am wondering is this worth it? Autumn will never run
marathons or anything, but we want to make sure that she is able to stand
in her standing frame w/o pain or further injury like she did before the break.
If the doctor says that she will be able to do so, but have a slight bend and/or
contracture due to the break and immobilization of her leg, then we absolutely
will not have the surgery done. Anesthesia is so risky for SMA kids,
and it is difficult to find a team who is familiar with this disease to do
surgery--and we don't really have much time to weigh our options if
this is the route that is suggested. Going under is usually not
problematic, but coming out often is, as SMA kids have problems clearing
their lungs after surgery, and many have an extreme reaction to the
anesthetic itself.
I'm scared to death. I talked to
my SMA mom friend tonight, and she assured me that even if Autumn does develop
contractures after the cast comes off and is not able to stand, serial casting
to straighten her legs is a very viable option. Her daughter had severe
contractures from not standing for over a year, and the contractures were
resolved within three weeks. (This is the same genius mom who has given me
information about the amino acid diet.) Suzanne also game me the name
and number of an orthopedist who has performed surgery on her daughter without
complications, so if and when we need a second opinion, at least I know who
to contact first.
Of course this orthopedist that we saw
today is not familiar with SMA, but seems very nice and is willing to listen to
our concerns. When we brought Autumn in last week and he saw her x-rays,
he immediately suggested that since her hip joints weren't firmly
anchored in the sockets like an 'average' two year-olds (due to SMA and not
being able to stand as long as and 'average' child) we should consider a
procedure to shave the bones in her upper thighs down, and then have
them screwed into her hip sockets to prevent hip dislocation in the future.
Well, it took me a day to process
THAT stuff, but after talking to Autumn's physical therapist, Brian and I
decided that we absolutely would not have that done. After all, she is
able to sit on her own and stand supported w/o any pain, so what would
be the benefit? When the time comes that she is not longer able
to do that, as long as she isn't in any pain, we still probably would not
have that done. Too risky, and for what???
So now Autumn has a purple cast on, and
Harrison was not happy with the color--he liked the pink one on her better.
The purple cast sticks almost straight out, which makes it more difficult to
get her in and out of h
Oh yeah--last Friday I got a
call from the Binson's people who are working on getting us Autumn's power chair, saying that our supplemental insurance had either lost or forgot to
file the paperwork for payment!!!! Not happy not happy not
happy... I got a cc note in the mail regarding payment, as well as Binson's,
and talked to Dave S. when I received the letter, who told me that we
should expect to have our power chair by next week or the week after. The
rep. that I talked to on the phone gave me the number for the insurance people,
and I plan on calling them tomorrow to find out what is going on, and why we
have been waiting since March, only to be told that it will be a minimum of four
more weeks until payment is approved!!! We'll see how that goes.
Also, our sales guy for our new house
left the company w/o saying anything to us. Brian got a call last week
from the new sales guy, and when he called back over the weekend, he was
informed that Ron had left. Shi*t again. Tomorrow he will call to
see what is going on. Ron arranged for the three of us to go to the design
center to pick out the exterior stuff and furnishings for the house next Monday,
so construction can start. I don't want to cut things too close to my due
date, and I sure want to at least have the house started in the next few months
so we can move and have more space.
I did have a Bridgett appointment today
(I'm 36 weeks), and melted down since everything has been so crazy.
She is the absolute best, and reassured me that the baby is doing just fine.
Surprisingly, my blood pressure was only 100/70. I thought it would be
through the roof. The baby has dropped some, and Bridgett says that she
doesn't think I'll be early, although she can't say for sure. Physically,
I feel pretty good, but wiped out from all of this stress and other stuff.
I'm hoping the baby waits until Autumn's medical stuff is resolved and we are
able to get situated with the house stuff.
It sucks. Brian feels the same way, except he's stuck at work so many
extra hours before the auto plants shut down in July. We cancelled an open
house last weekend, and I know that we're going to be scrambling to get the
house in order for the open house this weekend.
Guess we had too many tally marks in the 'good' column, huh? Bridgett says I have a knack for picking out the good in everything, and I said that even if I feel crazy, upset, and scared, at least I look like a million bucks.
June 18, 2007: Hi
everyone. Today was a long and sh*tty day, to say the least. I guess
after so many good ones, a bad one has to be thrown in for variety, doesn’t
it???
Anyway,
on Saturday, Brian took the kids out as usual when I was working. When he
tried to transfer Autumn from her KidKart to the car seat in the van, he
accidentally caught the heel of her little sandal on the edge of the KidKart.
It pulled Autumn’s leg a bit, and she fussed for a second, but he didn’t
think anything of it. Well yesterday, she was a bit fussy, but we
couldn’t figure out why. We went over and had dinner with family, and
Autumn was pretty good, but still fussed a bit more than normal.
Today
when she woke up, she fussed when I tried to get her out of her crib, fussed
when she had a bath, fussed when we tried to do just about anything. We
also noticed that she was grabbing at her right knee when she was being changed.
Uh oh. I got her in with our beloved pediatrician today, and she was seen
this afternoon.
Dr. Dagnew sent us to radiology, and we
found out that she fractured her distal right femur—that little bit of bone on
the top of her knee. It wasn’t a bad break per se, but the bone was in
fragments. Poor baby. Our pediatrician was so good, and has really
worked to understand SMA, so she knew how crucial standing is to Autumn.
She had three office workers on the phone, trying to figure out how to treat
Autumn’s leg while at the same time trying to figure out how we can keep her
comfortable and standing. Needless to say, there weren’t many options as
far as casting went, so Autumn now has a bright pink toe-to-hip length cast on
her right leg. It matches perfectly with the straps on her AFOs. How
ironic.
Autumn doesn’t seem to be in any pain
now, and seems to be okay with her new ‘pink sock’, as she puts it. I
lifted her from her car seat and carried her into the house, put her in Little
Purple, and she was rolling around without any problems. She went to sleep
fine tonight without any Motrin, so hopefully pain won’t be an issue anymore.
She did whimper when I changed her diaper, but I think that was more because she
was in a rather awkward position than anything else.
We
have to go for an x-ray in a week to see that the bones are set correctly in the
cast (no surgery was necessary since the broken bones were set close together),
and in about three weeks the cast will be removed in order to see how the bones
have healed. We were initially told that most kids stay in a cast for 6-8
weeks, but hopefully Autumn will heal quickly, and we’ll be able to get her
standing in short order.
Of course Brian and I are pretty upset,
but we were reassured that she will be fine. Funny thing is last week I
sent a packet to Dr. Dagnew about nutrition and SMA (thanks Suzanne!!!!) and
gave her an update about Autumn’s diet, medication, and supplements. Dr.
Dagnew actually took the time to read through everything that I gave her, and
asked me questions about the AA diet and supplements. She was in agreement
with everything that we were doing, and thrilled about Autumn’s weight gain!!!
She did tell me that calcium supplementation was great (Autumn gets 375 mg per
day of a chewable children’s vitamin), but to make sure not to give her any
more, as excess calcium that cannot be absorbed by the body can cause kidney
problems. Didn’t know that… She was thrilled about her standing,
and told Brian & I to keep doing what we are doing, and that she was fully
supportive of her diet, physical therapy, Valproic Acid/Carnitine, etc. that we
were doing. After talking to so many different parents of children with
SMA and listening to what they have to say, I am convinced that this doctor is
one of a kind.
So today sucked, but again, I am so
grateful that we are in the right place where we are in touch with all of these
people who can help us take care of Autumn, and make the right decisions for
her. Brian especially feels horrible about the accident, but he met us
right when we were going in for x-rays, and stayed with us the rest of the day,
putting off his work stuff for tomorrow. I’m glad too—being pregnant,
I couldn’t have gone in with Autumn during the x-rays, so I was glad that her
daddy was.
Both of us just hate this, we hate SMA, hate that a setback like this can contribute to other problems, but hey, that which does not kill us makes us stronger, right???
June 6, 2007: Geez--so much has happened, and I have been very terrible about updating! In March, we participated in a benefit for MDA--the Stride & Ride. Our family raised almost $1800 to benefit MDA in just a month and a half. On April 27, we were asked to speak at the Black and Blue Ball, another MDA event. Autumn's pictures were on the invitations, and she was the 'honorary road captain'. How cool is that? Well, instead of shooting from the hip or preparing a speech, I decided to read the previous entry from March 1 as I wrote it. I figured that would really hit home and get the point across, which it did. After the speech, so many people came up to us and told Brian & I what a good job that we did, and how much it meant to them that we shared our story. I was more than grateful that we were asked to do that, and told all of our MDA friends that we would be more than willing to help anytime that they needed us.
Of course, the food was good too...
Both of the kids are doing very well. Autumn is scheduled to get her power chair in 2 1/2 weeks!!! I think a fire must have been lit under someone's butt--approval through insurance and Medicaid is never usually that fast. We ordered a Permobil Koala, which is the same one that Autumn had as a demo, so we are very excited that she will finally be able to 'run' and play outside like any other kid. Inside we use Little Purple, which she is able to push from room to room, but Little Purple is too small to be used outside or in places like malls and restaurants.
Health wise, Autumn is also doing exceptionally well. We have begun following a partial amino acid diet following the suggestions of other parents of SMA children. Autumn gets between 3/4 and 1 pack of pediatric Vivonex a day (an amino acid formula that is designed to replace whole proteins in her diet), and we have cut out whole milk and reduced the quantity of meat that she eats. At her well-baby checkup, her pediatrician recommended a nutritionist because Autumn was not gaining weight like she should. Well, I have struggled to find one who is familiar with the nutritional needs of children with neuromuscular disorders, so I have been working with some 'expert' parents on SMA chat in the meantime. Well, it appears to be working! From August 2006 until February 2007, Autumn only gained 1 pound 4 ounces. Last week when she was weighed at therapy, she gained 2 pounds--in three months. She is taking Valproic Acid & Carnitine, which also may be contributing to the weight gain, but whatever it is, Autumn is healthy and doing well!!!!
More later, I guess. I'm going to try to work on updating this website with a makeover before our new baby comes. I'm due in 6 1/2 weeks, which I find very hard to believe!
March 1, 2007: Hi guys. Yesterday was a very very hard day for me, and I think Brian too. On March 1st of last year, Autumn was diagnosed with SMA. The night before, I was a mess, as we had to bring her up to the neurologist's office the next morning for and EMG and nerve conduction test. Autumn had been in physical therapy for low muscle tone since she was 9 months old, but we have NEVER had to see a neurologist before. I was scared to death. The EMG was horrible too--they hooked Autumn up to probes, and ran an electrical current through the needles to see how well the nerves & muscles responded to the signal. It was horrible. I waited in the waiting room, and Brian was with her. The test was 5 minutes long, but it was the longest time that I felt I'd ever been apart from her.
After we went back to the waiting room, Dr. Finkle came in a few minutes later & told us that Autumn had spinal muscular atrophy. Brian & I just sat their, unbelieving & stupid, trying to take this all in. Dr. Finkle took his time explaining things to us, but how can you remember what was said & process everything with a diagnosis like this??? He said that she had a moderate/severe type, and would probably never walk or crawl, and told us the basics about respitory (sp?) care & what to watch out for if she got sick. I held her and cried. I couldn't believe this was happening. There was no history of this in our family, and our baby had a disease that was 100% genetic. There was no treatment, no cure, nothing we could do now, and nothing that could have been done before to prevent this. 1 out of 35 to 40 people are carriers. Doctors don't test for this, even if you have an amino, and it is not part of the newborn screens that are done on every baby born in the state of Michigan. Half of all babies with disease die before age two. Half. All types included.
We cried all the way home, and I had to pick up Harrison from school later and try to keep it together. I just wanted to hug my Autumn and play with her and love everything out of her, but I couldn't. Nothing would make her better. Brian had to go on a business trip to Indiana that week, and I felt so horrible that he had to leave. I had the Internet and my babies, but he would be by himself in a hotel.
Okay, maybe the Internet wasn't the best idea. I got on (we had dial-up, which was painfully slow, and frustrating, as I wanted to take in as much information as I could), searched different websites, and freaked out, to say the least. Dr. Finkle didn't tell us about type I vs. type II SMA, and I saw the grim statistics and pictures of these sweet babies that looked so sick. I read about palliative care, trachs, cough assists, BiPap machines, feeding tubes, power wheelchairs, standing frames, braces, scoliosis surgery, everything that you could imagine that I had time for. I cried some more, not being able to get information fast enough, and feeling helpless that no matter what we did, our daughter could die anyway.
I cried every day for about four months. I called MDA, which was absolutely one of the best decisions I could have done, and got some better information. I joined SMA Support and met so many parents online who know exactly what we are going through, and how best to take care of these special kids. I have read articles, looked at message boards, and asked numerous questions, trying to find out what to do, how to get help, and how to keep it together.
It sucks. I get so frustrated with those ignorant souls who tell me to just feed her meat and put her down and she'll walk. I hate the stares and the physical effort that it takes to do what it takes to make Autumn's life 'normal'. I wish that I didn't have to worry so much about her not waking up in the morning, and what we will do if she ever gets sick. I'm scared to death of the endless doctor visits when the time will come when she's not so healthy and needs surgery for a g-tube or scoliosis.
I guess there are trade-offs though, and I try to keep that in mind when the days get so long and difficult and I don't feel so strong. Autumn is smart--SMA kids are known to be extremely bright and have above-average intelligence. When I asked my MDA friend Maggie if I should get life insurance or start saving for college, she told me, 'start saving for college, and make sure it's a good one!' (Bless you Maggie--those words will stay with me forever!)
Autumn has taught me how best to be a parent, how to love fully & not take any day for granted. She made me appreciate all that we have, and be grateful that we're able to do as much as we do, and that the majority of her doctor's and physical therapy appointments are happy and fun. To watch her and Harrison is the most amazing thing in the world. Harrison loves her to pieces, and always has since she arrived. He picks her up when she tips over, and asks us to bring her into his room where he can read to her, or put her in the hall where they can play with his bowling set. When she is put in her room for a time-out, HE is the one who gets upset, and wants her to stop crying. He holds her hand when they walk together in the mall, and tells his friends about his little sister when we go to school. I am thankful that I am able to parent a child like that too, and am going to do whatever it takes that he has as 'normal' of a life as possible, and does not miss out on any opportunities because of SMA.
Okay. Now a year later, today Autumn got to try out a power chair--the Permobil Koala. I tried so hard not to cry during therapy, as I can remember exactly one year ago that they told me all of this horrible stuff, but today my daughter was TWO YEARS OLD, and smart enough to learn how to drive a
power chair. Of course, being smart doesn't always mean being cooperative... Autumn sat in the new chair for about a minute, and seemed okay when she was moved into the hall, but then realized that all of Miss Barb's toys were on the other side of the door in the therapy room. She absolutely didn't want to drive her chair, she wanted to play with the toys!!!! We tried bribing her with M&Ms (her favorite) but that didn't work. Sigh. We took the chair back into the therapy room, and David the Binson's guy explained how the chair worked while Miss Barb held Autumn. When it was time to go, I pulled the van around to the front door, and David & Miss Barb helped me get it into the van. Autumn agreeably sat in the chair, but as soon as she was in the van, she kept pointing to her car seat saying, 'that one, that one' until we put her in.
Tonight after Harrison was done with his homework, I took both of the kids to Fairlane mall where I figured that there would be enough room for Harrison to run around and Autumn to try out her new chair. Problem was that it was raining like crazy, and the
power chair's speed was set on SLOW since she was a new driver. Yuk. Autumn was able to figure out how the joystick worked almost immediately as soon as she had enough room. She likes going
backward the best, but frontward will be more appealing with some speed, I think. When she didn't want to drive, she pointed at me and then the stick, so I was able to walk beside her and drive the chair too (they are over 200 pounds, and way to heavy to push, but the chair lifts up off the base so I didn't have to bend down--very cool).
We had a great time, but for Autumn, I think having ice cream & going on the little kiddie rides were more important to her. We'll be able to keep the chair for 2 weeks or so, and then hopefully we'll be able to order one that is specially made for Autumn. I'm going to take pictures and send them out as soon as I can.
Sorry this is so long. Writing is therapy for me, I guess, and I don't see most of you very often, but I want everyone to know what is going on. Thanks for your thoughts, gifts, prayers, donations, cards, love, and advice. It is all very welcome and much appreciated.
January 25, 2007: Good week this week! Autumn had her third MDA visit on Tuesday, and it went very well. The physical therapist, Ursula, saw us first, and was very impressed that Autumn was able to sit and balance as well as she could. Autumn has lost the ability to hold up her head while laying on her stomach, but Ursula & Dr. McCormick seem to think that is more due to her growing and getting heavier than the progression of SMA. Ursula discussed Autumn's current therapies with us (clinical pt weekly, and work with Heather twice a week), and assured us that she was getting everything that she needs. She did notice that Autumn had a slight front-to-back spinal curve, but didn't recommend that anything be done about it yet.
Next, we were seen by a third year resident, who asked us questions about Autumn's general health. She didn't seem very familiar with SMA, but wanted to know what Autumn could do. Dr. McCormick came over and looked at Autumn all over. Autumn of course saw this as playtime, and had so much fun entertaining everyone! She was very cooperative, and even stuck out her tongue when the doctor asked her to! Dr. McCormick was impressed with her strength and balance, and also agreed that she had improved since the last visit, and that the SMA was not progressing. She was very surprised that we have not had to take Autumn in to either the pediatrician's office or the emergency room for pneumonia. She was also amazed that Autumn enjoyed wearing her AFOs and spending time in her standing frame, as most kids hate that. She told us that we were doing everything that we could possibly do for her, and to keep up with the therapies.
When Autumn turns two, we are going to start her on the Depakote/Carnitor. Hopefully, this will give her a little bit of a boost in strength and stamina. Autumn will start for three weeks, and then have her blood drawn before the dosage is increased. After eight weeks on the drug, we will take her in to MDA again for another evaluation. I've heard good things from other moms whose kids have taken this, and am anxious to see what it will do for Autumn.
So, I am once again reassured that all is well. David S. from Binson's came out to measure Autumn for a power chair, and I am hoping that we get that before the baby comes in July. Autumn will be so happy to finally get to move around on her own, and it will be nice for me not to have to lift her as much! We will also be looking into a seat for the bath, as it is getting difficult to lift her in and out of the tub, as well as a ramp for the house when the power chair comes.
Busy, busy, busy!!! At least I'm feeling a bit better. I'm 14 weeks along, and still fight the sickies in the evening. It sucks, to say the least, and I'm not getting as much done as I'd like to, but I still have 26 weeks left to go....
January 1, 2007: Happy New Year!!! I sure can't believe all of the surprises that 2006 had in store for us! Most recently, we found out that we are expecting baby #3 in July! Brian & are are looking forward to a new little one, but can't help but wonder where in the world where will he or she go??? Every time we have a new baby, toys soon follow. Of course, we have kept everything from Harrison & Autumn, so we sure don't need more toys, but it is always fun to watch the kids play with new things.
(Santa, if you need any extra toys this year, we'll put them by the fireplace instead of cookies, okay????)
The kids continue to do well. Autumn especially has kept us all amazed. Harrison has brought home a few minor colds, but Autumn has fought them off without any problem at all (rah yeah breastmilk). We went to see Dr. Dagnew in early December to catch up on vaccinations, and she was floored that we haven't battled bronchitis and/or pneumonia AT ALL. Hopefully, we'll be able to keep it that way, and only go back for a well-baby visit in February! This month, we are going to schedule an MDA clinic visit to meet with Dr. McCormick, Julie, Maggie, and all of our other specialists. Miss Barb continues to meet with Autumn weekly for physical therapy, and has even helped us obtain a lightweight manual wheelchair for us to use! Hopefully in a few months (insurance cooperating, of course) we will be able to have our very own POWER WHEELCHAIR for Autumn--look out house!
Harrison is doing well too. He excells in school, and has so many friends. After bowling for 3+ years, he finally was on a team that won the grand prize trophy for first place in the league. Needless to say, he will probably be bowling for the next couple of years too. At home he enjoys garbage truck toys, garbage truck books, recycle trucks, looking a garbage & recycle trucks on the Internet, pretending to be a garbage truck driver, and sorting mom's different colored socks into laundry bins while pretending to be the driver of a recycle truck.
Wonder what he wants to be when he grows up?
Now I'm 11 weeks along with #3, and am getting anxious to find out the gender. Have to wait until week 20 when I have the ultrasound though--and I AM NOT the patient one!
More later. Thanks for stopping by, and please please please support MDA as well as SMA Support (http://www.smasupport.com). I would be a crazy mess without these two groups.