Journal for 2009
December 16, 2009 7:55 PM, CST
November 27, 2009 7:57 PM, CST
October 5, 2009 2:15 PM, CDT
September 16, 2009 5:20 PM, CDT
|August 21, 2009
Okay--here is what we've been doing this week.
August 12, 2009 2:27 PM, CDT
August 11, 2009 1:47 PM, CDT
June 16, 2009 2:10 PM, CDT
June 4, 2009 12:45 PM, CDT
March 26, 2009 1:12 PM, CDT
|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.
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.
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):
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.
http://www.our-sma-angels.com/autumnkay (for a tax-deductible donation to MDA, click on the link on this page)
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.
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...
--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.
--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)
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.
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.
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...
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.
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.
Happy Birthday to you.
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....
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!
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.
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.
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)
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
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.
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....
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.