Journal for 2009

December 16, 2009 7:55 PM, CST

All I want for Christmas is....

Hope for my child.
I donít dream of her walking.
I donít wish that she could climb a tree.
Those things are lovely, but we could manage life in a powerchair...
and I know my little fighter would rise to the challenge with a smile.
No, my wildest dreams are simple.
I wish my daughter could breathe.
I wish she could swallow.
I wish she could grow up...surviv e.
I wish the world knew about SMA
because I know if they knew the sweet babies it takes,
the smart children it cripples,
the future it snuffs out so prematurely --
if people knew about SMA
I know they would push for a cure.
I know they would donate to research.
I know they would sign the petition.
I know they would scream from the mountain tops:
"SMA is KILLING our children!!!"
A cure is so close.
Research is so promising.
I just hope it is in time for my baby.

** Written by another SMA mom - but, I couldn't have said it better myself! **
 

November 27, 2009 7:57 PM, CST

Hello and Happy Thanksgivin g to everyone!  Geez--it's been awhile since I sent an update.  The kiddos (and Brian too!) are keeping everyone busy, I guess.  I'll go one by one down the list to fill everyone in.

Harrison started scouting a few weeks ago, and just loves it.  His group had a popcorn fund-raiser in which he took third place.  For a reward, he got his own MP3 player and was allowed to throw eleven pies at his den leaders and helpers.  Already the merit badges are starting to come in, and I have bloodied many a finger trying to sew them on. 

Report cards and conferences came in mid-Novembe r as well, and Harrison is excelling in fourth grade.  He got an A- in language arts, reading, and science, and As in math, social studies, art, music, physical education, and moral focus.  He loves school, and often gets up before his alarm goes off in the morning to read.  He leaves well before it's time to go to school so that he can walk around the corner to his best friend's house, where they walk to school together. 

Aaron is, well, Aaron.  He has mastered the art of climbing, and can open doorknobs, thus requiring me to make a special trip to Target to get those spinning child-proof covers for all of the doors.  Otherwise, we were afraid that he would get out of bed and let himself out of the house.  Last week when I was putting Autumn down for a nap, I realized that Aaron was quiet for a whole two minutes.  Of course I ran into his room, and found him up on top of the changing table, reaching for a tube of Chapstick.  He told me, "I climbed up all by meself and want lipstick on."  He used the knobs of the changing table to climb on.  Never had this with Harrison, but this week Brian is planning to bolt all of his furniture to the wall.  That kid.  Of course he's as cute as can be, and very verbal, which makes it hard for me to keep a straight face.  Often when he knows he's in trouble, he'll look straight at me and say, "Mommy, you're pretty cute."  Hard to punish that kid.  Sigh...

Autu mn is FINALLY in preschool, and loves it.  After going just one day at the public preschool (and me arguing with the nurse about the potty stuff and finding that the classroom was very difficult for Autumn to get around in) a fire was lit at the school, thus closing it down for a few weeks.  Brian & I decided that we didn't want to send Autumn where we weren't 100% comfortable with, so we kept looking.  Autumn's wonderful physical therapist recommended the Center for Early Childhood Education, which happens to be in the same building where she has physical therapy.  This preschool is run by staff in the School of Education from the University of Michigan.  The tuition is fairly reasonable, and I like that students who are going into the teaching field are getting hands-on experience working with Autumn.  The classroom is big and open, and she loves the activites there.  Hopefully this will be exactly what she needs to prepare her for kindergarte n.  We're planning to send her to the school where Harrison goes, where she will be the first child ever to attend who uses a wheelchair.   Keep your fingers crossed on that one...

For the most part this year we've been sickie-free , but after Harrison's birthday party, Autumn started coughing.  No other symptoms or anything, just a cough.  We've been doing Albuterol in the nebulizer 3-4 times a day, and the CoughAssist machine after that.  It sucks, and is so time consuming.  I spoke to Autumn's pediatricia n the Wednesday before Thanksgivin g (always seems like it hits on a holiday for stuff like this, doesn't it?), to ask for a refill on the Albuterol.  She said that we didn't need to bring Autumn in just yet, as her oxygen levels were decent at 97-98, she didn't have a temperature , was eating/slee ping well, and didn't act sick.  Yesterday Aaron started with a runny nose, and woke up after his nap with a temperature of 101.  That came down with Motrin, but Autumn was still coughing, and her O2 levels were lower, 95-96, so I decided to stay home with the little kids while Brian & Harrison went to his mom's house for dinner.  Today, thankfully, was better.  Autumn still is coughing a bit, but her oxygen levels have consistentl y been around 98.  (94 or lower warrants a trip to the doctor, and lower than 90 means hospital time.  Not good, considering that if she did have to go in, she'd be exposed to who knows what else.)  Aaron was fever-free, and had a bit of a runny nose this morning, but now he's fine.  Hopefully Autumn will be able to shake off the cough without a trip to the doctor and antibiotics.   Thank goodness for the Cough Machine--wh ich insurance paid for--and the pulse ox--which it didn't, grrrr....  I don't think that Autumn would be as healthy as she has been without either of them.

...and by the way, what is WRONG with these insurance policies that won't pay for a pulse ox but will pay for me to take my child to the emergency room to have her oxygen levels tested????  Makes no sense.  Oh, I forgot--the y will pay if a child is on oxygen, has a trach, or is temporarily needed for sleep apnea like for premature babies.  Autumn's case doesn't fit the categories in the manual, so after fighting the insurance company and being denied twice a year ago, we gave up.  Brian's dad bought us a fingertip pulse ox, and we've used it about a dozen times a day for the past week.  Thanks, Dad!!!

The other day Autumn asked me why I had a girl who couldn't walk.  It broke my heart, and made me want to cry.  Of course, she wasn't sad, she was just asking.  Still, I hate even having to be put in the position to answer questions like that.  I told her that everyone was made differently , and that I loved her whether she could walk or not.  I told her that our MDA friends and various doctors were working hard trying to find medicine that would make SMA go away, and that as soon as that sort of medicine was made, I would make sure she got it.  Autumn does know that she has something called SMA, and that is why her muscles are weak and she can't walk or run.  That's what she tells those who ask why she uses a wheelchair.

It's amazing how insightful these kids are, and how adaptive especially Autumn is.  I love all of them to pieces, even on the days where they (well, mostly Aaron) make me crazy.

Pictu res coming soon.
 

October 5, 2009 2:15 PM, CDT

Hi everyone.  Today was Autumn's first day of school--fin ally!  I pulled her out of the special education program at Johnson, and insisted that she be put in a regular classroom with an aide.  Easier said that done, I know.  (My SMA friends agree, I'm sure!)  Anyway, two weeks ago her teacher came over to meet with us, and we discussed Autumn's needs.  I talked to the nurse from school on Friday, and told her what Autumn's physical limitations were, and what sort of accommodati ons that we would need.  Figure that would cover the bases, right?  Wrong.  Brian took the day off of work today to stay with Aaron, and Autumn and I left this morning half an hour early to make sure she would be settled in.

Soooo, we go to school, and right away Autumn began introducing herself to all of the other kids.  She is so social, and just loves friends her own age.  I spoke to the teacher and helper in the room, asked which potty Autumn would be using, and went to look at the bathroom.

Th en I was pissed off. 

I went back into the class, and asked how Autumn would be using the potty if there was not a table to lay her down on.  Autumn is completely unable to support her own weight on her legs, even with assistance, and needs to be laid down to have her clothes taken off, then set on her potty ring.  The teacher asked me if I talked to the nurse, and I told her that I had.  She called the nurse then on her phone, and handed it to me.  I explained (again!) to her that Autumn could not stand up, and needed a table to lay down on.  The nurse then suggested to me that we either put her on a chair or on the potty, and scoot her clothing down while she was sitting up!  I was so mad I saw stars.  I kept saying that although yes, she could sit up, that was so dangerous, and Autumn lacked the trunk strength to even have them attempt something like that.  I showed the nurse, teacher, and assistant the fold-up potty ring that we always keep in the backpack that hangs from her powerchair.   I said that we always use the potty ring, a special potty chair was not necessary, but we needed A TABLE for her to lay down on.  Well, we did find a table in the hall that was not being used, and moved it into the bathroom.  There is actually enough room for Autumn's chair.  If everything goes like it's supposed to, whoever helps her will take her out of the chair, put her on the TABLE to take off her clothes, then sit her on the potty ring.  I'm hoping they can figure that one out, and I will be um....not a happy camper should we say, if they don't.  I'm scared to death that she will fall off of the potty seat and really hurt herself.  Thank goodness that Autumn's physical therapist who worked with her at preschool last year was there.  He told the nurse that removing Autumn's clothing while she was sitting up was not a good idea, it was unsafe, and yes, she did need a table to lay down on.

I'm writing a nice list of instruction s in a few minutes.  Should have done that in the first place anyway.  I know that Autumn is probably the first kid with SMA that has ever been in this program, but I'm completely steamed that I was not listened to.  Hopefully things will fall into place, and my kid won't get severely hurt first.  I just want her to do whatever any other kid does, and all we needed really was room for her to move around and a damn table in the bathroom!!!!!!!!

Anyway...

Au tumn did seem to have a good time, and behaved very well.  She is used to being around kids her own age since we've always taken her out, and she's participate d in the bowling league and Playground Fitness, a Gymboree-li ke program.  As always, the other kids are curious about the chair, but Autumn tells them, "I use my Big Blue to get around.  I have SMA and can't walk or run."  She never seems upset, but does know to push little hands away from her joystick when it's grabbed at.  I'm keeping my fingers crossed that this works out for her, as I have heard good things about this program, and frankly, there aren't any more options.  The program she was in last year was good then, but most of the kids in that program have different issues than hers, and we want her 100% mainstreame d into a regular kindergarte n.

Keep your fingers crossed.  She's going again tomorrow, and I won't be able to stay since I don't have someone to watch Aaron, and that would defeat the purpose of preschool anyway.  She is happier with me gone, but I sure hope things are figured out by tomorrow.

Oh --by the way.  Harrison came home last week with a certificate , and told me that he was the first kid to make 'Student of the Month' in his 4th grade class.  Every year since kindergarte n he has been student of the month in either September, October, or November.  I am so proud of him.
 

September 16, 2009 5:20 PM, CDT

Autumn traded powerchairs with her friend Mikah and chased Ian around the room in his mobile stander.  Brian & the boys left around 1, but Autumn wanted to stay.  We had other new friends that were coming, and she told Brian that if she left with him, "Torrance would be VERY disappointe d!"  I was amazed that physically she was able to stay in her chair for as long as she did.  We stayed until the balloon and confetti drop at the end, and Autumn came home absolutely covered in shiny confetti. 
 
I only cried once at Telethon, which was a first for me.  Usually I spend the whole day crying on and off.  Anyway, at the end of the broadcast when we were waiting to go on, I was speaking with another mom who had a son that was a teenager.  I asked her where her son was since I didn't know her well, but had seen her at other events.  She told me that Kevin died just days after last year's Telethon from Duchenne's muscular dystrophy.  He was 16.  I lost it then, and felt so horrible for that mother, kno wing that I had my Autumn, other parents were there with their kids, and she didn't have her son.  That could be us, it could be any one of my MDA/SMA friends.  I am in awe of the strength that this mother had, and how hard it must have been for her to come again this year.  It makes me sick, so sick, that this evil disease took a kid away from a mother who obviously loved him so much.  I'm humbled, really, and in awe of how strong some of these people are.
 
Anyway , today Autumn & I went to a lockup at Hockey Town Cafe in Detroit.  We spoke to several 'jailbirds' who were trying to raise bail money for MDA.  My Little Miss Social was having the time of her life, going from person to person, saying "Hi, my name is Autumn, I'm 4 1/2, I have SMA muscular dystrophy."   When my MDA friend Julie asked me to come up to the front of the room to speak my Miss Autumn had to go up too.  I gave the abbreviated version of what was going on with our family, told them what MDA had done for us, and thanked them for coming.  I then handed Autumn the microphone, and she just jabbered away.  More than once she went up to speak to people, and each time it was something different.  Once she kept repeating over and over, "I can't walk, I can't crawl" but it was more of a statement on her part than something she was upset about.  She also told about her lift chair that MDA help us get, and said that "I can do it by meself."  One time she even gave a demonstrati on of how Big Blue worked, showing off her headlights, horn, and lift mechanism.  It cracked me up.  We left after a few hours, and she was so tired when we got home. 
 
More good stuff...
 
Aa ron has his two year old well-baby checkup yesterday.  He is almost 29 pounds (60t h percentile) and 38 1/2 inches (well off the charts, maybe 120th percentile).   No wonder he looks so skinny!!!   The pediatricia n said that everything was right on target, and was shocked by how much that kid talked.  She was asking me if he was able to put two words together when Aaron pointed up at the sink and said, "I want to wash my hands right now mommy!"   He's using the potty now, but since he doesn't yet tell us he has to go, we are still a little ways away from getting him out of diapers. 
 
N ow here's the absolute icing on the cake...
 
Bri an's hand surgery was Monday.  It was just orthoscopic surgery, an exploratory procedure to assess the damage to the ligaments.  He got a cast on, and was sent home, but had to come back to the office on Friday.   Yesterday  he went in to the doctor's office because the swelling on his hand went down so much that the cast was almost loose enough for him to pull off.  The doctor put a new one on, and then told him the damage was not as bad as they expected, and that he does not need any further surgeries at this time.  He'll be in a cast for two weeks, then go back to the doctor for an evaluation, and another cast will be put on again for two more weeks.  After that he'll need some physical therapy, but thankfully this is better than two more surgeries and 4+ months with his left hand out of commission.   Saves on my back too, since I'm doing most of the lifting with Autumn since he can't.
 
So that's it for now.  I have pictures, and I'll try to send them out in a day or two.  Thanks for reading...
 
August 21, 2009

Okay--here is what we've been doing this week.

MDA put us in touch with a gentleman who bought a house that had a stair lift. He contacted them because the lift was brand new, and he thought that one of their patients and/or families could us it. Us!!! :)

So Thursday Brian, Harrison, his stepdad, and a friend went over to Kevin's house to pick up the chair lift. It came apart and fit into Pete's truck. We brought it home, wiped it off, and then put it together. It was missing a part that plugged into the wall, but rather than have it lay on the floor, we went ahead and put it up. The lift does run on a battery (and works now), but we need to have it plugged in so that the battery is kept charged. Brian will call Kevin this weekend, and he also has another contact, so hopefully this will be fixed soon! The chair lift actually doesn't take up that much room on the stairs, and surprisingl y matches with our carpet! Autumn tried it out today before bed, and she can operate the controls all by herself. We do have to lift her in & out of the chair, but at least it saves our backs from carrying an almost 40 pound child up and down the stairs at least five times a day.

(Wonder why on earth I don't weigh 130 pounds and have a 29 inch waist???)

Ba d news now...

Brian has been having pain in his wrist for months now, and found out that he has torn ligaments which will require surgery. Today he had an EMG done, which showed (thankfully ) that it was just the ligament that was damaged, and not the muscles or nerves. Sept. 14 he will go in for orthoscopic (sp?) surgery to find out exactly what needs to be fixed. The procedure should only take an hour, but he will be in a cast for who knows how long. No lifting. After that, 'real' surgery will be scheduled to fix the torn ligament. He'll have four pins placed, two permanent, two temporary. After that surgery, he will have a cast on for 10-12 weeks, plus physical therapy when the cast comes off. Two of the pins will eventually come out, but I'm not sure when that will be.

Did I mention that the hand in question is the left one, the same one that he uses for writing and just about everything else???? It sucks.

So the lift comes at a good time, but I just hate having more equipment in my house. I just want a cure for SMA so we can put this sh*t behind us, and not have to worry about stuff like this anymore. I live in fear of blowing my back out. I'm scared about Brian's hand surgery.

AND I HATE HATE HATE SMA FOR WHAT IT IS DOING TO MY FAMILY.

August 12, 2009 2:27 PM, CDT

Just thinking about things and trying to clear my head. I debated about posting here, but am curious as to what everyone (SMA community or not) thinks. Here goes...

1. I hate not being able to take my daughter to 'regular' parks and playgrounds.

2. I hate always feeling obligated to be Autumn's advocate when I really just want to be her mom.

3. I hate feeling like I always need to be right and/or do the right thing.

4. I wish people wouldn't STARE!!!

5. I hate always feeling like I should be grateful when I'm really just pissed off.

6. I hate that some of my close friends and relatives bring their kids over to get-togethe rs when they are obviously sick, and risk infecting Autumn, resulting in a hospital stay.

7. I hate not being able to go on vacation and get away, with or without the kids.

8. I hate always being so tired.

9. I hate my minivan.

10. I hate people who park on the hash marks.

11. I hate businesses that aren't accessible.

12. I hate that Autumn can't ride roller coasters.

13. I hate hooking my kid up to machines and tubes every night even though it doesn't seem to bother her.

14. I hate the thought that my daughter has a disease that kills kids and will probably kill her unless a cure is found.

15. I hate having to put on a happy face and pretend everything is okay.

16. I hate insurance companies that either deny payment for equipment or make us wait months and months for what we need.

17. I hate having a house full of medical equipment and supplies.

18. I hate having a life that revolves around SMA.

19. I hate always being so sad.

20. I hate that my Autumn's body isn't nearly as strong as her mind or her spirit.

21. I hate worrying about my daughter's future, and who will take care of her when she's older and we can't.

22. I hate how much time SMA takes away from doing fun things.

23. I hate hearing my little girl explain to other kids that she has SMA and can't walk.

24. I'm scared that Autumn will be seen as an easy target and be victimized since she can't fight back physicallly.

25. I hate knowing that whatever I do may not be enough.

26. I hate tubie alarms.

27. I HATE the smell of Vivonex.

28. I hate the extra school paperwork, meetings and bullsh*t because of SMA.

29. I hate people who talk down to Autumn and feel sorry for her.

30. I hate it when other parents don't let their kids approach Autumn, play with her, or ask questions.

31. I hate doctors who don't listen!!!

32. I hate that Autumn doesn't have any friends with SMA who live close by to play with.

33. I hate explaining SMA over and over when people ask what's wrong with my Autumn.

34. I am devistated every time I hear that a child with SMA has died.

35. I hate it when people tell me how lucky Autumn is to ride in a powered wheelchair. It's lucky they can walk.

36. I hate the thought of Autumn being hospitalize d for surgery or because she is sick, and the doctors who are assigned to her are clueless.

37. I hate that Autumn's brothers are dragged into the SMA fight too.

...okay, here are some 'likes', because I hate (ha ha) to always sound so negative.

1. I love being strong enough to fight for my daughter.

2. I love that I get to be a parent to such a special child.

3. I love that Autumn is smart, beautiful, and outgoing.

4. I love that we can give Autumn a good life.

5. I love that most people we have come across are compassiona te and will go out of their way to help us.

6. I love Autumn's strength.

7. I love that Autumn has two wonderful brothers who are accepting of her and love her no matter what.

8. Most of the time I love Autumn's in-your-fac e attitude and don't want to squash it too much.

9. I love my new friends who have helped me because of SMA.

10. I love MDA events and seeing everyone at Telethon.

11. I love that we live in a society where Autumn ca go out and isn't shunned.

12. I'm glad for federal funding for stem cell research that provides hope for a cure.

13. I love that thus far Autumn has a team of doctors who are fighting as hard as we are.

Thanks for reading.
 

August 11, 2009 1:47 PM, CDT

Hi everyone.  Sorry it's been so long since I've updated.  Lots going on, and with all three kids home this summer, things have been busy!

Next week we are getting a lift chair for our stairs!  MDA put us in contact with a gentleman who moved into a house with one installed, but didn't need it.  Kevin (the guy) contacted MDA, who then put him in touch with us.  The stair lift is almost brand new, and will need only a few bolts to secure it to the stairs.  It plugs in a standard outlet, so that saves us on having an electrician coming to hardwire it into the house.  Woo hoo!!!  Autumn is almost 40 pounds now, so this will be a real saver for our backs.   Plus, it saves us over $2500 for the cost of a new one.  I'm beyond grateful...

Here's the summer bummer, I guess.

Brian has been having pain with his left wrist on and off for months now, and since it has been getting worse, he decided to have it looked at.  The bone doctor couldn't find anything from x-rays, so he had an MRI done, and it was discovered that he had some torn ligaments.  He doesn't know the extent of the damage yet, so next Friday he is going for an EMG.  Not sure of how this happened either--may be an old injury from when he was working at Northwest, exacerbated by work now and lifting Autumn.  Anyway, he needs surgery to repair the torn ligaments, probably around the end of September.  He'll have permanent and temporary pins put in, then a cast for 10-12 weeks.  Oh, did I mention he's left handed???  Sigh again.  Hopefully he won't be off of work for that long, but it all depends on how well he heals.  After the cast comes off, then he'll need surgery again to remove the temporary pins.  After that, things should be fine, but it will just take a long time to heal.  At least we'll have the chair lift in before then, and hopefully the kitchen painted.

Jus t when you think you're getting a handle on things, life gets in the way.  :(

Pictures of the kids too.  It was so hot yesterday, and they had a blast in the sprinkler.
 

June 16, 2009 2:10 PM, CDT

Hi all.  We just got back from another MDA appointment.   Autumn hasn't been since January, and we usually go for a checkup every 4-6 months.

Toda y, she weighed in at 37 pounds (50th percentile) and was 43 inches long (95th percentile).   Everyone was amazed at how much weight she gained since the tubie surgery, and how good she looked.  Prior to September, she was in the 3rd percentile for weight, but now she is doing great.  Her blood work was right on target with everything too.  She needs some more vitamin D, but with summer coming, the sunshine should fix that.  Dr. McCormick said that weightwise she is right where she needs to be, and shouldn't go much past the 50th percentile.   She said stay the course for feeding, and if she is starting to gain too fast, then we can revamp her feeding plan to include less calories through the tube.  Too much padding on a kiddos with SMA can hamper what mobility they have, and it is harder to lift her and move her around.

Equi pment wise, we should get a new red stander in a few weeks.  Right now we are borrowing one from Binson's, but will get a new one that is exactly the same.  The Giraffe stander that Autumn outgrew will be donated to MDA's loan closet for other kids to use.  Right now it's taking up space in our basement, and getting dusty.  Autumn's powerchair was also adjusted, making it go just a tad bit faster (a little over 4 mph tops) and turning sharper.  This will make it easier for Autumn to get around in her classroom, and of course she likes the little extra speed outside when she is racing with Harrison.

La st month we went to see the pediatric orthopedic surgeon, Dr. Mendelow.  That was a good visit too.  He is pleased with how well Autumn is doing thus far, and thought that he didn't see any progression of the curve in her spine.  When she went last September, it was x-rayed at 13 and 17 degrees.  He did notice that Autumn is beginning to 'hunch' when she sits, and recommended that we put a roll on her lower back when she is sitting in her wheelchair to prevent that.  I bought a pool noodle, and we cut it down and attached it with Velcro to her chair.  She looks like she is sitting up better, and says that she likes how it feels.  Dr. Mendelow also recommended more vitamin D, but held off on x-rays.  She needs to be seen again in 8 months or so.

So I'm happy for now--no more doctors' appointment s for anyone until July when Harrison and Autumn go back to the pulmonary doctor, unless the sickies come into our house.  Yay!!!   I'm glad that things have slowed down a bit, and we can enjoy the summer.

One last thing, I guess...  It seems that every time I go to one of these appointment s, for whatever reason, I cry.  Especially MDA--I love our friends there, and we get excellent care, but you never forget how you felt when you took your child in and got that horrible diagnosis.  My SMA friends can relate, I'm sure.  It's been 3+ years since all of this started, and it still hurts.  I've been told time and again that it's amazing how we're being so proactive when it comes to using the various machines and being on top of things, but all we really want is to have Autumn live as good of a life and as long of a life as she possibly can until a cure is found.

I love all my kids, and am thankful every day that Autumn is ours to take care of, but this SMA is a b*tch of a disease, and I would give my front teeth for a cure.
 

June 4, 2009 12:45 PM, CDT

Hi all.  I've been meaning to update for awhile, but life sort of became busy.  Nothing new I guess. 

Harrison:
Ne xt week will be his last week of school.  He is very excited to be out, but of course he'll wake up early in the morning to eat (man, that kid can EAT!!!) and do all of the other kid things that he likes to do.  Transformer s are edging out garbage trucks as the new favorite, and he is driving Brian absolutely crazy with questions regarding the different robots.  He and Brian watch one or two cartoon episodes of Transformer s on weekends, and he is anxiously waiting for the Transformer s movie to be released in June. 

Autumn:
Alwa ys the most with this kiddo, but I guess it comes with the SMA territory.  Today she was weighed at therapy, and she has gained 10 pounds since her tubie was placed in September!!!!   I was absolutely shocked.  She is now a hair above 36 pounds.  I haven't measured her in a month or so, but the last time I did, she was 41 inches.  No wonder she needed new leg braces and is growing out of all her clothes!  Geez...  She looks good, and although she still sleeps 12 hours at night, with a 2-3 hour nap everyday (which is unusual at age 4), she seems to be more perky during the day.  Her favorite word is, "WHY???" which drives me nuts too.

Aaron:
P oor baby.  This kid is so busy, always running around and bumping into things.  A few weeks ago, he had three different colored bruises on his head from running too fast and falling down.  Yesterday I was holding his hand in a store so he couldn't take off on me (nothing new), and he swung around and clipped the side of his face on the keys that I was holding in my other hand.  Sigh.  At least he won't have professiona l pictures taken until he turns two in August.  Hopefully by then he'll slow down a bit.  He hardly ever cries when he falls, just gets back up again and runs some more.  He talks a blue streak in 4-5 word sentences, which is so much more than the other two did. 

Guess that's it for now.  I have some more pictures that I'll be sending out hopefully this week.

Love,
W endy
 

March 26, 2009 1:12 PM, CDT

Hi everyone. There is something here about all of the kids today. We have been so busy these last few weeks, but with good stuff. Brian has been off for the last two weeks due to company layoffs, but hopefully will go back on April 6. He only has three weeks off so far, plus the one in January, one less than the four he was told initially, but of course things can change, so we're keeping our fingers crossed. It has been so great having him home, and we're getting as many appointment s out of the way as possible, but going to work and getting a paycheck is nice too. Sigh...

Harrison:
Yesterday Harrison and I went to his parent/teac her conference and got his report card. As always, there are no problems to report, and he continues to excel in class. A few months ago, he took some some standardize d tests, and scored in the 'High Average' or 'High Categories' in all areas--86th percentile for mathematics , 85th percentile for reading, and 96th percentile for language usage (no surprise there!). His school report card grades were good too, with an A- in language arts, A- in reading, A in mathematics , A in social studies, B+ in science, As in art, P.E., and music, and an A for moral focus/effor t and conduct. I'm so happy and proud of my boy. This school has been wonderful, and I can't believe that we could ever pay for a better place for him to go. As an added bonus, we live in the neighborhoo d behind it, and he can walk there and back with his friends, which he loves.

A utumn:
Kid #2 is doing very well with her new BiPAP. She had some issues with the first mask--we think she was sensitive to the gel padding, as when she woke up from a nap it looked like she had a red bullet hole in her forehead. Yikes. The respiratory therapist came out the same day that I called her, and exchanged the mask for a different one. She still is getting some pressure marks around her face and on her forehead, but they're not nearly as bad, and we're experimenti ng with some different pads to put around the mask. Still, she is sleeping very well at night, and hopefully she'll become more energetic once she has the sleep study, and the BiPAP's settings are adjusted to meet her needs. Of course, all of this stuff takes more time, and it takes us almost an hour (seriously) to get her in bed from start to finish. Clothes off, using the potty, brushing teeth, putting pajamas on, using the CoughAssist , changing tubie cotton, getting her food ready, hooking her up to the pump, diapering for nighttime, putting the BiPAP mask and headgear on and starting the machine, tucking her in with blankets, and arranging her 'friends' takes an awful long time. Yet another reason why I hate hate hate SMA.

Aar on:
This kiddo had another well-baby visit with Dr. Dagnew. Brian took him, as the appointment was at 10 am, and I wasn't sure that he would be done in time to meet Autumn's bus if we both went. Still, it's nice that Brian has been volunteerin g to go to these appointment s, so I can play catch-up (yeah, right!!!!) on laundry when he's gone. Anyway, our Aaron got a clean bill of health. At 19 1/2 months he is 35 1/2 inches tall (95th percentile) and 27 pounds, 3 ounces (50th percentile). He's doing everything on target, which we're also happy about. He's probably the most talkative baby out of the three, and certainly is the most active!

So that's it for now. I'll send some more pictures soon, of course. That camera battery will need to be replaced before too long, as I'm always running it down.

Lo ve,
Wendy
 
March 18, 2009:  Hi everyone. Here are some pictures of Autumn with her new BiPAP. The respiratory nurse came to set it up yesterday, and of course Autumn wanted us to take some pictures.

Last night, she slept with it on from 12-4 am, which wasn't too bad. Today, she slept 3 hours with it during her nap, and it's on right now for bedtime.

The settings are still pretty low to allow her time to get used to the swishing noises and having all of the stuff on her face, but I'm actually amazed at how well she is tolerating this. Today, she watched the Akers family on 'Extreme Home Makeover' again, and quite loudly pointed out how their daughter had a BiPAP mask just like hers. The respiratory therapist also commented that she was unusually cooperative and agreeable about the whole thing. That's our girl!!! :)

I'm so glad that we have this now, and am anxious to get things set up for Autumn's maximum benefit.
Thank you SO MUCH for the wonderful doctors, therapists, and wonderful SMA friends. Suzanne W. especially--I'd be lost and clueless without you.

Love,
Wendy
March 13, 2009:  Hi all. Busy week this week for Autumn. Aaron was supposed to have a well-baby visit, but that was pushed back to next week, so we only had two--pulmonologist and IEP for Autumn.

The pulmonologist visit with Dr. Toder was a follow-up. Autumn has been going every six months since a year after her diagnosis. So far, nothing unusual has come up, but since SMA is progressive and respiratory issues are the #1 cause of any problems, we do want to stay on our toes with that.

Dr. Toder was pleased of course that Autumn uses her CoughAssist every evening, and more when she (or even one of us) is fighting sickies. I told her about the bout with bronchitis and the throw-ups, and still she was pleased that we have been able to prevent anything major, and keep her out of the hospital. I told her again how concerned I was that she sleeps so much for a 4 year-old--12+ hours every night, and 2-3 hours for naps. Sometimes, she'll even sleep more if we don't have to wake her up for school. She had a sleep study which showed that her O2 didn't drop while sleeping, and that her cO2 was within the normal range, but slightly high.

(Respiratory muscle weakness due to SMA can cause a person to have lower levels of oxygen and to retain cO2 since they often aren't able to inhale and exhale as deep as your average person. Over time, this can cause severe lung problems if left untreated.)

Soooo, Dr. Toder is prescribing a biPAP (bilevel positive airway pressure) for Autumn to use while sleeping. I hate that she will be hooked up to yet another piece of equipment while she sleeps, but again I want to do this proactively and have her get used to it while she is younger. Like the CoughAssist and tube feedings, if Autumn will eventually need it anyway, I'd rather have her get used to it now, rather than in the hospital while she is sick. On Tuesday, a nurse will come over to the house and show us how to use the machine, and adjust the settings. BiPAP is sort of like a gentle CoughAssist, with a mask that fits over her nose, which is attached to a machine with a hose. The machine gently blows air into her nose, which allows for greater lung expansion.

I found this cute picture of Elizabeth H. and Dora, wearing a BiPAP mask.
http://www.fsma.org/FSMACommunity/DailyLife/equipment/

After Autumn gets set up, a few weeks later we'll go to Children's Hospital for another sleep study with the feeding stuff and BiPAP so that the settings can be adjusted again. Hopefully this will help Autumn down the road, and lessen the fatigue and sleepiness. Sigh... Every day we use all of this equipment, and while I'm so glad that we have it, I WISH that not walking was the only issue.

Anyway, when we were getting ready to leave, the nurse told me that Families of SMA had recently made available a booklet about respiratory care issues. She went to get me a copy, which I flipped through before leaving the office. It seemed pretty good, BiPAP 101 among other things, but when I got home and really started to read it, I was amazed. There were several pictures of kids throughout the booklet, but there is one of me giving Autumn a cough treatment in the hospital on page 18!!! I wish I would have known that so I could have pointed it out to Dr. Toder and the nurses. How cool is that??? I'm not normally on FSMA's website, but I love their quarterly publications. They also pump a ton of money toward research in finding a cure for SMA. Here is a link if you'd like to download the booklet and/or order a copy (it's in PDF format):
http://www.fsma.org/LatestNews/index.cfm?ID=4108&TYPE=1150

Autumn's annual IEP was Wednesday. Nothing much changed from last year, just some updated physical therapy and speech goals. Next year, she won't be going to this preschool. I'm not unhappy with it, her teachers and aide are wonderful, and think she is getting great help physically, I just want her to be with 'regular' kids in a 'regular' classroom. Hopefully, she'll end up at Taylor Exemplar with Harrison. I need to call and find out exactly what we need to do regarding that, and see what services she will be able to receive. She gets clinical pt with Barb, which she's had for almost three years, and I'm extremely happy with, but since she does have a speech delay, I want to have that addressed as well. All of that means more phone calls, more meetings, more jumping through hoops to make sure that my Autumn can and does do as much as she is able to.

Did I say before how much I hate SMA????? It's like I'm so grateful to be in a place where we can successfully have and raise a child like Autumn, keep her healthy, and make sure that she has a good life. Still, I'm sick of the doctor's appointments, sick of the equipment, sick of worrying about how my back will hold up, sick of the stares, sick of insurance companies, sick of worrying what comes next.

I hope a cure is found, and you bet your butt that Autumn will be one of the first in line to get it.

Love,
Wendy
http://www.our-sma-angels.com/autumnkay (for a tax-deductible donation to MDA, click on the link on this page)
March 5, 2009:  Okay, I'm on the computer again, when I have a million other things that I probably should be doing. Our fundraiser for MDA is tonight, and we're all so excited. Harrison literally ran to school to see if he could get some more of his friends to come! Today, one of our neighbors who I only met once, stopped by to drop off a check since he and his family couldn't come to the restaurant! I almost cried--what a kind a generous thing to do.

Autumn's MDA neurologist called, and we had a wonderful conversation. She just got back from a conference, and was talking to me about SMA kids and diet recommendations. So far, it looks as if we're right on track with what we're doing for Autumn--she said that recent research shows that a vegetarian diet low in animal proteins and milk/dairy is best for kids with SMA. Amino acids (what's in Autumn's Vivonex) are most easily digested, and it's important not to overload the kiddos with protein--2 grams per kilogram of body weight is best. She was actually reviewing the spreadsheet that I gave her for Autumn's diet as we were talking, and gave me the thumbs-up on everything! She did suggest adding coenzyme Q and l-glutamine, which can be found in a health food store. She's also arranging for us to speak with a nutritionist who is actually familiar with the needs of kiddos with SMA! In two weeks Autumn will have another blood draw to see where she stands with the nutrition stuff and medication increase, so we'll make adjustments from there, should we need to.

This has also going around and around in my head today, and if I don't write it down, I think it will drive me CRAZY. Here goes...

Why we need a cure for SMA:
1. The equipment needed for Autumn takes up too much space that we can use for toys.
2. I hate driving a minivan, let alone one with a ramp that tends to malfunction. Minivans aren't cool, and they don't come with a manual transmission which is fun to drive.
3. People who park on the hash marks, thus blocking access to the above hated minivan, really p*ss me off.
4. It is very difficult to travel with all of the equipment, and we want Autumn to see other places besides Michigan.
5. Fighting with insurance companies over the phone to obtain needed products and equipment takes up too much darn time.
6. Autumn would really love to be as sneaky and get into as much trouble when my back is turned as her little brother does!
7. Way too many doctors' appointments.
8. You are constantly reminded of what your child can't do, and wonder how that will affect their happiness and well-being as they get older.
9. The stares! One lady at Target was craning her neck around so much to look at Autumn that she pushed her cart into a rack of clothes and knocked it over.
10. Hearing words used in reference to your child like 'crippled' 'disabled' 'confined to a wheelchair', etc., and seeing those who use those words look at your child with pity.
11. Constantly worrying about your child getting sick, and having to miss events and/or outings because of that fear.
12. Bathroom issues when we go out--it's always a struggle to take clothes on & off while draping Autumn over my shoulder and balancing one foot on the toilet seat. It's really going to suck when she gets older.
13. Living in fear of hurting my back while at the same time trying to do everything physically for Autumn that she can't do herself.
14. Not being able to ride roller coasters at Cedar Point with her mommy who loves them (Brian & Harrison don't like things like that, but I know my Autumn would).
15. Not getting a good night's sleep because the darn tubie alarm keeps going off--and when we go to check it, Autumn is sound asleep.
16. I hate crying when I hear of one of our friends from the SMA community is sick, in the hospital, or dead. It's like a punch in the stomach, knowing that this disease hurts and kills children, and your child has that disease too.
17. Seeing my Autumn's face on a flyer for fundraisers because she has SMA hurts. I've always thought that this sort of thing was for other kids before I had one of my own. Still, I like that our family can be part of something to help make a difference, and want to raise awareness.
18. The cardboard boxes, bags, and paper stuff that her food and other supplies come in really pile up.
19. I want to be able to do more 'mom stuff', instead of being the caregiver. It takes me over 20 minutes just to get Autumn ready for and in bed, and this doesn't include showering and reading a book--using the cough machine, pottying, teeth brushing, pajamas, changing the tubie cotton, fixing the formula, medicine & calcium prep, hooking up the feeding pump and tucking in.
20. Emotionally and mentally my daughter is right on target, and advanced in many areas. Physically, she is weaker than a 6 month old. She can't get into a sitting position, put any weight on her legs, crawl, or even pick up her head while lying on her stomach. She's like spaghetti, and it's absolutely heartbreaking to pick up my daughter and feel her limp body in my arms.

I'll quit now. Hopefully tomorrow I'll give a report on how things went tonight, and post some pictures. The little kids are sleeping, and Harrison is still at school. In a few hours we'll get ready to go, and we'll see how the pigtail vs. crown debate goes!

Thanks for listening.
Love,
Wendy
March 4, 2009:  Hi all. It's been three years--can you believe it??? March 1, 2006 was when Autumn was diagnosed with SMA II. It's so so hard to go back and think of what happened, the testing, and what we were told on that day. At the time, I couldn't imagine a parent being told anything worse than what we were told. We just thought our daughter had a delay, and whatever was the matter with her, even if she never was able to walk, we never in our wildest dreams thought she would be diagnosed with a disease that could kill her.

That hurts so much just to think about. Neither Brian nor I have any history of this disease--it's recessive, and Autumn got both recessive genes from each of us. NOTHING could have prevented it, and testing for SMA as part of the newborn screening in Michigan (as all other states) is not done. Autumn was born with the help of a midwife in a jacuzzi tub, and was caught by her daddy. She was a LOUD and chubby baby, meeting all of her milestones except when it came to sitting, crawling, and walking. She even rolled over at 11 weeks, which is early even compared to unaffected babies.

I've learned so much over the last three years...

The good:
--I am stronger than I ever thought possible.
--I love my husband, love my family, and will do absolutely anything for them.
--I am eternally grateful to the doctors and therapists who have been instrumental in giving Autumn the best care. I've heard horror stories from other families about how difficult it is to get even the most basic care, and I have no complaints. Autumn has the best medical professionals who treat her with dignity and respect, and listen to our concerns. No matter what happens, I know they have our family's and Autumn's best interests at heart.
--I've met the most wonderful people, who I know that I wouldn't have come into contact with otherwise, were it not for SMA. My SMA Support friends, MDA friends, coworkers, lifelong friends, family members, and those strangers-turned-friends. Thank you. You are what have kept me from falling apart.
--I've learned that if your child is having issues, regardless of what they are, you can't be in denial. Go with your gut, and find someone who will listen and address your concerns. If some medical professionals brush you off, disrespect you, or make you feel uncomfortable, find a someone else. Do not allow yourself to be bullied.
--You never know what tomorrow will bring, so live each day to the fullest, but plan for tomorrow. Treat your child like any other, and do not allow their issues to become an excuse for bad behavior. Most of the individuals in this world do not have special needs, and you need to teach your child to fit into and function in that world as best they can. If you expect nothing from your child, you will get nothing in return.

The bad:
--I don't have many good things to say about insurance companies, end of story.
--Our house is gradually becoming overrun with equipment: stander, power wheelchair, manual wheelchair, braces, potty seats, special shower, feeding seat, ramp van, etc.
--It makes me sad to think that some people may not be as friendly and helpful to Autumn at age 14 as they are now at age 4.
--Not everyone is as fortunate as we are, and it breaks my heart that I can't help everyone.
--I know that eventually I'll be butting heads with some really ignorant people when it comes time for Autumn to start school, and I'm not looking forward to that.

The really really ugly:
--It is very likely that Autumn will die from complications from SMA. The latest research I've come across (I can't remember the source right offhand) is estimating that of all children with SMA II diagnosed at this point in time, only 30% will be alive at age 50. This disease is more than not being able to walk. It is fatal, and we need to find a cure.

I'm done with that...

I never EVER want people to feel sorry for me, for Autumn, or for our family. I'm glad to be able to have the opportunity to raise three wonderful children, and want people to have the same expectations for Autumn as they do for the others. I want people to see Autumn as we do--a smart and beautiful little girl with a life full of opportunity and promise. I want people to be understanding of differences, and respectful.

So that's it. March 1st will always be very difficult for our family, but hey, what can you do???

For those in the Detroit area, please come to CiCi's pizza tomorrow (Thursday) from 6-8 p.m. for our MDA fundraiser. I am getting so excited, and can't wait to see everyone. If you are interested in donating to MDA, there is a link on Autumn's SMA angels website--scroll down on the first page. The donation can be made anonymously, and is tax-deductible. Again, monetary donations = more research = a cure.

Love and best wishes,
Wendy Persinger, proud mommy of three
Harrison (age 8 1/2), Aaron (age 19 months), and Autumn, age 4)
February 27, 2009:  Well, the washing machine has slowed down these last two days. Aaron has been hurl-free since Wednesday, and Autumn only threw up once yesterday, and once the day before. Both kids are sooooo sleepy though. Wednesday they were both in bed before 7:00, and Autumn didn't get up until 9:30! Today they both napped for over 3 1/2 hours. Autumn went to school, but I got a call 2 hours later from her teacher saying that she was crying and her tummy hurt. I packed up Aaron and went to get her. She cried a little in the car, and said that she just wanted to go to bed. We go home, I 'burped' her through the tube, and put her to bed. She got up after an hour to go potty, and then was down for another 3+. Poor girl. Aaron was happy and playful today, but sleepy too. Hopefully these sickies will be GONE by this weekend, and I'll have time to fold laundry. Honestly, I think I've washed every blanket, sheet, pillow, sleeper, and Autumn/Aaron outfit at least once.

(...as an added note, I think that if Autumn did not have her g-tube, she would be in the hospital for dehydration. After all, she couldn't eat or drink anything without it coming back up for over two days. Having her in the hospital with strange people, many who have HUGE egos and are not necessarily familiar with the care of a child with SMA is a scary thought for me.)

Today Harrison got two awards for good grades (all As) and perfect attendance. He went with his grandpa Pete to the Waste Management dispatch yard to drop off a flyer for our fundraiser next week, and came home with bags and bags of WM stuff. Very cool, but I'm scratching my head trying to figure out where to put it all.

A funny tonight--I was giving Autumn a cough treatment in her room, and was asking Harrison what he wanted to be when he grew up. He said that he still wants to be a garbage man. I asked Autumn the same question, and she said, 'a PRINCESS.' Sigh. She then started to whine about something (which is like fingernails on a chalkboard for me), and I told her, 'Now Autumn, you know princesses don't whine.' My future garbage man piped up and said, 'Yeah, but some do!' Not helpful, but funny. I guess she got the girly gene, but not from me. I was such a tomboy when I was her age, and didn't really even wear makeup until college. This girl likes perfume, having her hair fixed, looking at little kids' clothes, scented lotions, jewelry, purses, etc. I'm having fun with it, but I know that Daddy will have to be on guard against the boys when she gets older!

Oh yeah--Aaron's turning into a little chatterbox too. In the last few weeks he's learned how to say applesauce, animal, Aaron, upstairs, downstairs, pin, book, dip-dip, nose, eye, and balloon (the favorite). Neither of the other kids seemed to talk so much so early, so I guess Aaron's taking after his mother. :)

If you live in this area and are able to attend our MDA fundraiser, we'd absolutely LOVE to see you. We'll be at CiCi's Pizza buffet on Middlebelt, just north of Ford Road next Thursday from 6-8 pm. Just place an order, drop your receipt in our box, and CiCi's will donate a portion of your purchase to us, which we will give to MDA. I'm going to be taking the camera, and can't wait to see everyone.

Love,
Wendy
February 23, 2009:  This has SO not been a good day...

Yesterday after I sent the update, I got off of the computer, got made up & dressed for work, then changed Aaron as he got up. I just finished with him when Brian yelled at me to come in Autumn's room. She was sick again, and it was all over everything. She can't sit up without help, so it was a huge mess. We had hooked her up to the tubie for naps like we usually do, but apparently nothing sat right. Brian & I started getting things off of her bed, and she just looked at us with the biggest eyes and said, 'Uh oh--my babies are dirty. My babies need a bath.' I didn't know whether to laugh or cry. We baby-gated Aaron in a safe place while Brian gave our Autumn a shower, and I (icky icky icky) took care of the sheets, pillow, clothes, and babies. Thank goodness we have an upstairs laundry room.

I was a few minutes late for work, but Brian had everything under control, and I have a wonderful boss who is more than accommodating.

Brian called me at work at 7:00 and said that both Autumn and Aaron were still throwing up, and wondered if he should give Autumn any medicine. Yikes. He had to give Aaron bath #2 of the day, but Autumn managed with just a change of clothes. I came home around 10, and discovered that Aaron had thrown up again before he fell asleep, but Autumn was doing okay. We didn't use the tubie last night, which was probably a good thing.

Today we kept Autumn home, and both her and Aaron slept in until Harrison had gone to school. ALL of today was spent between cleaning up heaves, doing laundry, and giving baths. Not fun. The kiddos were so sick, and very unhappy. We finally got settled down in our large rocker/recliner, me in the middle with a kid on each side, and fell asleep for a little bit. Aaron kept fussing for a sippy of water, and Autumn was constantly telling me that she was thirsty, but every darn time that I gave either one of them something to drink it came up. EVERY time. Eventually, I put Autumn in her bed for a nap, and Aaron fell asleep again in my bed. That lasted about an hour, then Brian (he was doing computer work at home) came in and told me that she was sick again. Another shower, clothes change, and set of new sheets.

Pretty much the whole day was like that. Brian got some Pedialyte, which I put in Autumn's tubie and set to run at 10 ccs/hour. I'm scared to death that she will end up in the hospital if she can't drink anything, and I know that electrolyte solution is the best thing in situations like this. I'M SO GLAD THAT WE HAVE THE TUBIE!!!!!! If we didn't, we certainly would have taken her in to be seen last night. Aaron is drinking a little bit of water, and had a decent sized bowl of applesauce, so hopefully he's through with the worst of it. Autumn looks terrible--she is so pale, and tired. She wanted to be up in bed to read a book after a three hour nap, but couldn't turn the pages, and wanted to go back to sleep after less than an hour. She told me to brush her teeth, and allowed me to give her a cough treatment without fussing or throwing up (surprise there), then went to sleep almost immediately. She's not congested and is breathing fine, so I figure that since we have the tubie and are giving her fluids through that, even if we took her to the hospital they probably wouldn't do much more than we are doing here--except that the fluid would be through an IV rather than the tubie.

Still, if she isn't markedly better by tomorrow afternoon, I'm calling Dr. Dagnew to ask her what she thinks. I hate to bring her into the hospital, and expose her to who knows what, and have them do what we're doing anyway. I'm still learning, but thankfully am able to ask advice from other seasoned parents who have been through this before. Still, I'm keeping a close watch, and probably will be a very light sleeper tonight.

Love,
Wendy

P.S. I didn't keep score on the heaves & hurls, but today Autumn had two showers and Aaron had three baths--not counting the wipedowns. Sigh...
February 22, 2009:  Hi everyone. This is NOT turning out to be a fun weekend. Friday I had a bit of an...um...tummy bug, which is slowly going away. Yesterday I went to work and Brian stayed home with the kids. He said they actually were very good, but when we checked on a sleeping Aaron around 11:30, we found that he had thrown up. Ewwwww.... So he had a midnight bath, clean pajamas, clean sheets, and a nice daddy to rock him before we put him to bed once again. I got him a drink of water, and wouldn't you know it, he threw up again. Sigh. New pajamas, a new blanket, and another load to throw in the washer. This morning, I had to change his clothes again, change the sheets again, and wipe up another mess. He ate a bit of muffin for breakfast, played like he always does, and is now taking a very long nap, none worse for the wear.

I took Autumn and Harrison to Target today to pick up some stuff. We shared some soft pretzels, and Autumn started complaining that her tummy hurt in the car. Uh oh. We made it home, and I was getting ready to 'burp' her with the g-tube, and she threw up. Another shower, clean clothes, more laundry, and now she is sound asleep.

Harrison and Brian are fine. This is some weird stuff--no fever or any other symptoms. Aaron did have a runny nose on Friday, but that is gone. I'm keeping busy with the cleaner in the bathrooms, and making sure the soap dispensers are filled up, and keeping my fingers crossed that we've had the worst of it.

More stuff...

On Thursday I was told that one of Autumn's friends that she met at MDA's Labor Day telethon is in the hospital. Mikah also has SMA, and he and Autumn had so much fun comparing powerchairs last year. He is 3 1/2, and has been in the hospital in intensive care since February 13. He has an NG tube (feeding tube through his nose) and is on a ventillator (breathing tube down his throat) to help him breathe. He has RSV and pneumonia. His mom has a website set up for him, and has posted lately that although he is doing better, he is still sedated so that he doesn't fight breathing against the tube. He received a blood transfusion, and isn't out of the woods yet, but is holding his own. I cried when I saw the pictures of this sweet little boy on the website. Again, I can never say enough how much I hate this disease, hate what it does to our kids, and want more than anything to find a cure. Most kids contract RSV at some point in time, but it can be deadly for those who have SMA and are respiratory compromised. Pneumonia too is so serious. I'm honestly scared for them, and hope like hell he is strong, his mom is strong, and that he has good doctors who know what they are doing, and have experience caring for those kiddos with SMA. Mikah has type II SMA, and does not have a g-tube or bipap. He is one of the brightest kids that I have met, and is absolutely adorable. I have the cutest picture of Autumn holding hands with him at telethon, and I'll try to send it along.

I have to get ready for my mom-job waitressing, but I figure I'll attach our fundraiser flyer. If you're able to, please come, otherwise pass it along if you know others who may be interested. I also created a link on Autumn's SMA angels website to donate to MDA. I can't put into words how bad I want a cure for this disease. If it takes another one of my friends or my daughter, I think I'll go to pieces.

Love,
Wendy
February 16, 2009:

Happy Birthday to you.
Happy Birthday to you.
Happy Birthday Miss Autumn.
Happy Birthday to you!!!!!!!!!!!!!

My Autumn is four years old today. She is healthy, happy, and STRONG! At her doctor's visit, she was 41 inches tall, and weighed 31 pounds 7 ounces. She went from being in the 3rd percentile at age 3 to the 25th percentile at age 4. Dr. Dagnew was happy with how she was doing, and commended us for having the tubie placed. She told me that she was amazed at how healthy she's been--even more so than your 'average' child, but of course we all know that Autumn isn't average! :)

Every birthday, no matter how good, it bittersweet. I don't know how many she'll have, as SMA can be totally unpredictable. I still cry at that thought, and can't imagine life with out my precious daughter.

We're doing a fundraiser for MDA--there is a link to donate on her website. Our MDA has been so good to us, and I know that they are funding so many research projects. Every day I think of how glad I am that I have Autumn as my daughter, and that she's not in another family who won't take good care of her, but I will never EVER stop hoping for a cure.

Happy Birthday little girl. I love you so much.

February 7, 2009:  Just a quick update from the goings-on this week.

On Tuesday, I took the van in to Advantage Mobility, where they do ramp conversions. It was starting to sound less like a van, and more like a race car, and we noticed some oh-so-conspicuous holes in the muffler pipes. Of course, that was one of the things that wasn't covered by the warranty, so I had to drop $350 for a new muffler and pipe. The pipe was rusted allllllll the way to the front. Crap. At least now the ride is quieter, and I don't have to worry about the thing falling off in the car wash. Hopefully tips this weekend will be good.

On Friday, Autumn had a follow-up visit with the surgeon who did the g-tube, Dr. Ehrlich. She went in November for the button change, but had some granular tissue (the icky mushroomy stuff) under the button, and he wanted to see if it was going away. He gave me some silver nitrate sticks, which looked like long q-tips with a black end to use on the tissue. Autumn hated those--I think it burned a little. So, I got some great advice from an SMA friend (thanks, Andrea!!!) to use tea tree oil soaked gauze pads, which we have been doing. We alternated tea tree oil with Neosporin, and the icky stuff is almost completely gone. The button was sticking up a little farther from her tummy than it should have been, and we were worried that it may catch on her shirt and get pulled. Ouch. Dr. Ehrlich checked and said that she did indeed need a smaller tube, and had the nurse get one.

Autumn was so good. At her first change, she wimpered quite a bit, probably from the 'ick' factor more than anything. Friday, she knew what to expect, and was fine. The nurse took a syringe, put it in the side of the 'plug', and drew out 4 ccs of water, which deflated the balloon that held the tubie in place. She pulled out the plastic, which looks like a little straw with the plug at the end, put the shorter one in place, and filled up the balloon again. It's as easy as changing an earring. We have a tubie set coming next week, so when the balloon deflates, usually between 3-6 months, we can do it at home.

I also found a program that pays for diapers and other dermatology supplies for kids with a qualifying diagosis. Autumn is potty-trained during the day, but needs diapers at night since she gets so much fluid. The company will send out a monthly shipment of diapers, bed pads, and wipes, which insurance will pay for. Yay!!!!! It will save us a chunk of change in the long run, especially since those diapers get more expensive as a child gets bigger.

Still, if she didn't have SMA, and could get up at night herself, we wouldn't need all this stuff....

Love,
Wendy

P.S. We were also told that since Autumn is doing so well with the tubie, we don't need any more 'regular' appointments with the surgeon. One less routine doctor's appointment is always a good thing!
January 30, 2009:  Hi all. The other day I was so frustrated with Harrison! Granted it was an accident, but geez---that kid.

I was washing my upteenth load of laundry, and Harrison told me that he needed a shirt to wear to school tomorrow. I put a BIG load of his & Autumn's clothes in the washer after he went to bed, washed them, then put them in the dryer. After the dryer stopped, I went in the laundry room with a basket to collect the clean clothes.

Oh crap. I didn't expect this.

Every single thing that was in the dryer had red, blue, and yellow spots all over it. NOTHING was untouched. In addition, the dryer had smears of color all over the door, the rubber seals around the door, in the drum, and on the back. Brian & I went through the pockets, and tried to find what caused that awful mess. Figures that nothing was in the pockets, but we did find little scraps of cardboard that could only have come from one of those little crayon boxes. Harrison left that in his pocket after he went out to dinner with his grandparents, and it got in the wash. I almost cried--those clothes were ruined, and I had no idea how to clean out the dryer so color wouldn't get on our other stuff.

To make a long story short, I called Whirlpool, and was given some happy homemaker suggestions, which involved me becoming lightheaded after hanging my head inside the dryer, upside down, and scrubbing with spray bathroom cleaner and a toothbrush. I washed some old towels, dried them on high in the dryer, and yay yay yay--no more melted crayons! The door and back of the dryer have a nice red/blue marble color to them, but at least it isn't coming out on any more clothes. The color-stained kid clothes I washed in our bathtub with dish soap (also a happy homemaker tip from the Whirlpool lady), then washed & dried again. Most of the colors came out of the darker clothes, but Harrison will be buying some new school uniform shirts (of course they're white!), white socks, and t-shirts. I'll wait for the sale at Target.

Today, the kiddo comes home, and waits almost a full hour before he says that he has his report card. I LOVE report card days, at least now that I'm the mom! Both Brian and I are happy with the education that Harrison is getting at school, and have always had high expectations for Harrison. Harrison seems to love school too, and had never had any issues.

The report card was so good I almost cried.
A- in language arts. A in reading. A in mathematics. A in music. A in physical education. A in moral focus/conduct. He also has perfect attendance, not missing any days of school this year.

This school is not a cakewalk. I've been stumped on more than one question on his homework, and he's in third grade! He gets homework 5 days a week, along with spelling tests, reports, projects, etc. In addition, there is a strong emphasis on behavior. They don't tolerate misbehavior from students, and incorporate writing papers on topics such as respect, self-control, integrity, wisdom, perseverance, and gratitude in their lessons.

So I'm oh-so-proud of my garbage-truck loving boy. He began kindergarten when he was 4, and Brian & I agonized over whether or not to send him. Academically he's excelling, and socially he is doing very well too. He has loads of friends, but is (of course) bothered by Kaitlin who sits next to him.

Brian & I are still hanging on, but every week when he goes in for work meetings, it seems as if there is always something not-so-happy that he tells me when he comes home. So far he still has a job (a good thing, especially if you live in Michigan and work for the auto industry), and our insurance hasn't been hit yet, but his wages have been cut more than I care to think about. He will also have quite a bit of mandatory lay-off time, so I'll be working as much as I can at my beloved Chinese restaurant while he takes care of the kids. We're keeping our fingers crossed that this it only temporary, and hope things will turn around after the first quarter. I do have a Master's degree, but haven't worked in a professional position since Harrison was born. Social workers up here don't make as much as engineers, and the child care situation would be a nightmare to coordinate if we were both working full-time, so for now I'm happy to keep my little mom-job. My boss is very flexible, and money is actually very good. I love my co-workers, and even going in every day it still doesn't feel like work.

I live in fear of blowing out my back though, so I've started using my gym membership that I've had since 1997. Can't hurt, anyway, and I could stand to peel off a few pounds, which may even help the tips...

Sigh... I wish spring would hurry up and it wasn't so cold and snowy all of the time. The kids get cabin fever, and miss being outside.

Otherwise, everyone is strong and healthy, and we have everything we need. I'm forever grateful.

Love,
Wendy
January 28, 2009:  Hi everyone. Sorry that it's been quite a while since I've updated, but Brian had a week off due to company cost-cutting measures, I've been picking up some extra days at the restaurant. Love it though, and Brian is soooo good with the kids.

Case in point. Yesterday I took, Harrison and Aaron to McDonald's playland. Harrison had been asking to go, and I thought it would be fun for Aaron to burn off his seemingly endless supply of energy. Aaron has never been to an indoor playland before, and loved it. He thought the nuggets were pretty tasty too. (Pictures are coming!)

When we got home, Brian's car was in the driveway, but I had no idea where he was. I got Aaron out of his coat, and Harrison settled down with his homework, when Brian started knocking on the sliding door--he and Autumn were outside sledding! He tied a rope to a long plastic sled, laid Autumn down in it (she was too wobbly to sit up) and was pulling her around the yard. It was 24 degrees and snowy! Autumn had the best time going up and down snowdrifts, and was so happy. Of course I don't have any pictures of that--the camera battery died at the playland. Sigh... Now all day long, Autumn has been asking me to take her sledding, but it is colder today and snowing again. Hopefully we'll be able to go out again soon and get some more good pictures.

Last week we had Autumn's MDA appointment. Get this--in September she weighed 26 pounds, on January 7 she weighed 30 pounds, 5 ounces, and on January 20 she weighed over 31 pounds!!!! Funny thing is that her height has been consistent at 41 inches, so she is just filling out. We were told that she is the poster child for proactive g-tube placement! Dr. McCormick and all of the other MDA friends were so impressed that she was doing so well. I asked about the elevated blood phosphorous levels, and was told that it wasn't an issue, that many kids have elevated levels as a result of growth, and that we'll keep monitoring that at her next blood draw. Again, Dr. McCormick reassured us that all of her lab work was fine, and to keep doing what we're doing. Yay!!! Also, I was again asked to speak to a group of graduate students at Wayne State University in Detroit in March and/or April when the subject of neuromuscular diseases comes up. Dr. McCormick is called in to speak, and she asked us to come along as well, to add that 'personal' touch. We did it last year with another family, and Autumn was such a ham. Of course, I'm always glad to help with things like that, especially since many of these would-be doctors may never see a person, child or adult with SMA. I was also asked to talk to a family who was having a hard time coming to terms with their child needing a g-tube. Again, I'm always flattered to be asked to do something like that, and remember how it was when we were the ones newly diagnosed with all of the questions. We wouldn't be where we are today without help from other parents.

Guess that's it for now. I'm going to try to fit a quick nap in before Harrison gets home while the little kids are sleeping. Then hopefully the roads will be clearer than they were this morning, and we can do a food run!

Autumn will be 4 years old in a matter of weeks, and I can hardly believe it. As everyone knows, I love all of my kids very much, but there is something so darn special about my little girl.

Love,
Wendy
January 14, 2009:  Hi all. This week Autumn received a loaner stander--the EasyStand Magician, as she was growing out of the one that she had since she was 16 months old. The Magician is so much better for her, and much easier for us to put her into and get her out of. We put her on the seat (sitting), adjust the knee pads so they are close to her knees, then squeeze a handle to lift her up to the sitting position. She doesn't need knee immobilizers anymore, and since we got it, has stood up for over 2 hours every day! In the other one, we were lucky to get one out of her, and that was only if the T.V. was on.

Of course we'd still like to try out and possibly get a power stander, but in the meantime, this works perfectly for Autumn!

:)
Wendy Persinger, mom to 8 year-old Harrison and 1 1/2 year-old Aaron (SMA-free) and almost 4 year-old Autumn (SMA II)
January 7, 2009:  Hi all. I just got back from a visit with Dr. Dagnew and both of the little kiddos are asleep. Autumn has been coughing since two days after Christmas, and although she didn't have a fever, wasn't lethargic, no runny nose, etc., we decided to have her looked at. We were doing cough treatments 4-5 times a day with Albuterol nebulizer treatments before naps and bedtimes, and still the cough. You would not believe how much time that takes up--it takes us 45 minutes just to get Autumn ready and in bed without reading a story! We still have to do the tubie routine too, and believe me the extra stuff gets real old, real fast.

Anyway, I brought my happy chatterbox to Dr. Dagnew, who listened to her lungs, and promptly diagnosed bronchitis. She said that it was in both lungs, with the left one being more severe. That threw up a red flag, as she told us that if we didn't get it taken care of NOW then Autumn was headed to Pneumonialand--a place she's never been and I don't want to go. We were sent for a chest x-ray just to be sure. The x-ray came back clear for pneumonia (whew!), but today we start on an intense course of antibiotics. She'll do Zithromax for two courses just to make sure that everything is knocked out. She's not contagious, and okay to go to school. Geez. You'd never know anything was wrong with her, just this little soft-sounding cough.

Good news...

Autumn was weighed today, the first time since her tube was placed. She was barely 26 pounds, and in the 3rd percentile for her weight. Today....


Drum roll...


She is now 30 pounds, 5 ounces, and in the 25th percentile for weight!!!!! Dr. Dagnew copied her labs to show me, and she is in the NORMAL RANGE FOR EVERYTHING. Protein, calcium, iron, EVERYTHING!!!!! Phosphorous was a bit high, but it was like that before, so I'm going to check with the MDA guys about that when we go on the 20th of this month. Dr. Dagnew isn't sure if it's from diet (but doesn't think so since she doesn't eat & can't chew most phosphorous-containing foods and isn't getting an excessive amount from the tube feeds), but most likely from not being able to move around. High levels of phosphorous may lead to kidney stones, so I'm going to follow up on that.

Glad we have the tube. For breakfast before school yesterday, Autumn had her chewy vitamins, one calcium gummy, and a swig or two of apple juice. It took her 20 minutes, not kidding, to get that into her. Today before we left she shared a big muffin with Aaron--Aaron had half of this fist-sized muffin with a piece of cheese, and Autumn had one little bite. That child just doesn't get hungry. Last night I made some macaroni & cheese. Autumn loves loves loves cheese, and was actually excited when I put the plate in front of her. She inhaled two spoonfuls, complete with 'yum yums', then looked at me and said, 'I all done mom.' Sigh. I'm making her chew gum as often as I can to prevent jaw contractures. I hope it helps.

So right now I'm grateful that she'll be okay, but am so mad at SMA for robbing me of all that time that would be much better spent playing with my kids than sitting in a doctor's office or doing extra treatments. Still, SMA will not take her, not yet, and I am one mom that refuses to sit on her a**, but instead will fight for a good life that all kids, and especially my Autumn, deserve.

Love,
Wendy