Journal for 2006
November 16, 2006: Happy 21 months old! We have been so busy this past week. Harrison turned 6 on Friday, so our family all came over to celebrate his birthday. It was so much fun--we had cupcakes and a sundae bar, and then he opened presents. Autumn and Alex (my brother's son who is 3 1/2) had so much fun playing bowling. Harrison got some great presents and Alexander Emre (Brian's brother's son) played and played with Harrison's balloons. Now if I could only find a place for all of this new stuff!!!! Next year for birthdays and Christmas, we're asking people that if they want to buy gifts for the kids, hopefully they'll only get one or two! We already have so much, and are quickly running out of room! Plus, Harrison and Autumn don't seem to 'grow out' of their toys and lose interest, so we keep most of their stuff for them to play with. I hate to have them get more toys, and then we have to get rid of some that they still enjoy.
(Where are the 'Extreme Home Makeover' guys when you need them?)
Yesterday, before my mom left, we went to Applebee's for an MDA benefit. It wasn't as fun as the Bunny Blast last April, but we were able to see our MDA friend Steve and meet with so many new friends who were donating their time and money to help out MDA.
Okay, complaint time... (and I don't think Steve was happy with this either!)
We were given a set of tables in smoking for MDA guys to use. Of course there are more nonsmokers than smokers, and that was why it was set up like that, but geez... We were sitting at the very end of the table, and couple sat across from us, and began sucking on their cancer sticks and blowing that smoke around. Disgusting. When I came back from the bathroom, mom was talking to a couple who also insisted on a table in smoking, but were fussing that Autumn's kid kart was taking up too much room. The kid kart was under the table, and it is a little big, but it didn't seem that these guys were very understanding. We ended up moving because of the smoke anyway. I don't know how people can stand that stuff. It is disgusting, dangerous, expensive, and makes you look and smell filthy. I'm all about adults doing what they want to do in the privacy of their own home, but in a public place, it is a health issue. I've always hated any type of smoke, but this is not good for Autumn.
Okay, I'll quit.
Kudos to Applebee's though. Brian & I always go there anyway, but even more now that they support MDA. Target too--they don't do 'Toys for Tots', but do support MDA, and had a big presence at the telethon.
November 1, 2006: We had so much fun yesterday!!! Halloween is my favorite holiday of all time--it is so much less commercial, stressful, and annoying than Christmas. Brian & I took the kids trick-or-treating around our neighborhood. Harrison was a garbage truck (go figure) and Autumn was a pumpkin. It was pretty chilly, so we just stayed around the neighborhood. Autumn had such a good time. She pointed to her bag when someone was about to give her a treat, and then said "thanks" after they dropped it in! When Brian told the kids that it was time for them to start heading for home, she told him 'no no no' and did the sign for more. Both of the kids got loads of candy, that I will try my best to stay out of!
This has been a busy few weeks as far as equipment goes. Autumn got the back for her KidKart, but it wasn't what we wanted. The cushion was square, and we couldn't use the straps for it. However, Pete (Brian's step dad) talked to some guys from an upholstery shop, and after 30 minutes, they cut holes in the pad & cover and sewed around the holes to keep them from unraveling. We threaded the straps through the holes, and bingo--Autumn can use her new cushion! Now we just need a buckle for the bottom, but we aren't going to ask the vendor to get that for us. He is a very nice guy, but it took him 2 1/2 months to get us a square cushion.
We got our SnugSeat too--finally. (What's up with stuff taking so long???) Autumn just loves it, and was served breakfast while she sat in it this morning before I put it in the car. It is huge, but she will be in it until she is about 8 or so. It is well-padded, and safe, so hopefully we'll be able to take car trips longer than 30 minutes! She didn't do well at all in her regular car seat, and this was recommended to us back in April, so we'll see how it goes.
Have to say this too. Thank you MDA and SMA Support. Thank you Julie & Maggie, and all of those wonderful people who work to raise money for these wonderful organizations. Thank you to those individuals who open their hearts and wallets and give freely so that people like me can get the help that we so desperately need. For those who don't know, SMA Support makes it possible for me to put together this website. The families on chat know and understand what we are going through, as they are going through the same thing with their kids. I am on chat almost every day, and love to read the stories and see pictures of these amazing people. MDA has pointed us in the right direction, and from the get-go had provided us with superb medical care and access to the equipment that Autumn uses daily. Autumn goes to the MDA clinic in January, and will hopefully get fitted for her power wheelchair. In the meantime, Maggie and Julie are scouring the loan closets, trying to find a lightweight pediatric manual wheelchair for Autumn to use until hers comes through.
Also, thanks to you who read this, and take the time and interest to learn about SMA and our family. I love you too.
October 23, 2006: Guess I'm doing okay this week. Still don't like the van much, but it is easier to get around in, especially now that it is getting colder. The kids aren't sick anymore, which is great! Autumn missed one day of Heather coming out, and Harrison missed bowling last week, but that wasn't horrible. I didn't sleep as much as I probably should have since I was worried about things snowballing into pneumonia, but once again, we survived unscathed!
Still nothing from the vendors. I called Greg about the KidKart, and he told me that the back was supposed to be in last Thursday or Friday, and he would call me this week to come out and fit it. The restraint system would be worked out then, so I guess that means another two months or more until we are able to transport Autumn in the KidKart. The SnugSeat is missing in action. Apparently, it was approved through Brian's private insurance, but the Children's Special Health Fund/Medicaid people are holding things up. Geez, it's a one-piece car seat, that we have been waiting for for over four godd*mn months!!! I hate how the system works, and if you call to ask any questions or complain, you are treated like you are bothering them, and you should just shut up and be grateful that they are able to help you at all. Makes me feel like everyone should work on tips.
Another thing that made me feel horrible was that two weeks ago when we were at the bowling alley, Autumn was playing with this little purse that she borrowed from Heather. This other little girl came up and started reaching in the purse to play too. Her daddy stopped her, but I told him that it was fine, and I was happy to have her play with Autumn. She played for a minute more, and then her daddy kept calling her over to the table where they were, bribing her with treats. The girls were playing so well, and it really hurt my feelings to know that this man didn't want his girl to play with my Autumn, even after I told him that it was okay. I mean, the older kids were bowling, and it's not as if they were ready to leave or anything. Sigh.
That's what I hate--the stares, the looks, the people who wonder what is going on with my kid, but don't have the balls to come up and ask. I'm almost tempted to put a sign on her chair. Thankfully, Autumn is very friendly, and waves and says 'hi' to everyone. It will be so cool when she is able to talk, so she can interact with others herself. Kids are pretty good already. They come up to her chair, and touch her feet. At most, they ask a question or two, then treat her like they would any playmate. Adults steer their kid away from mine. No one is rude, but people stare and don't ask any questions. God, I hope that Autumn is able to make friends and do what any other kid does. I hope that parents get to know us, and that Autumn is able to go to playdates and spend time with kids her age just like Harrison did.
As much as I can, I want her to have a 'normal' life. I want her to be able to do what every other little girl is able to--from her chair. The medical stuff is horrible, and makes me so upset, but that I really can't control. I can't fix what is going through other people's heads, but I can try my hardest to surround her with good friends who do understand and accept her.
My kid is just as beautiful and smart as any other.
October 13, 2006: Boy, for being at home, and having such a cluttered house, things sure have been busy! This week, we bought a minivan with an automatic ramp. I am so not a minivan mom, so I went kicking and screaming (figuratively, of course!!) to the car dealer to purchase and pick this thing up.
It is a 2005 Ford Freestar. The conversion is VMI, and it is lowered to make room for the ramp. The kids sit in their car seats in the waaaay back since the middle row of seats was taken out. There is enough room for the KidKart to remain unfolded in the back, so when we get somewhere, we can just take Autumn out of her car seat and turn around to put her in the KidKart without even opening the door. Pretty slick! This will be great when the bad weather comes. I won't have to fold and unfold the thing with freezing fingers, and Autumn will be much warmer in the car. Harrison loves the van too, and seems to really enjoy sitting in the back and using the ramp when we put it down.
Okay, so it has it's advantages. As soon as the kids move out, I'm getting my truck!
Autumn has a runny nose tonight, so I'm keeping my fingers crossed about the sickies. I will be on pins and needles this year about that, and god forbid anyone comes to our house with a cough!!! I'm so scared that I won't be able to impress on others how important that it is to stay away from Autumn when they are sick. For most kids it's not a big deal, and exposure to germs is actually a good thing. For Autumn, having a brother in school is good for her immune system, but we still have to be careful. I would be so so so pissed if someone intentionally came over sick, knowing that they were sick, thinking that it wasn't a big deal---and my little girl ended up in the doctor's office/emergency room/hospital with bronchitis or worse. Guess we'll cross that bridge when we come to it...
September 20, 2006: Yesterday was such a hard day. I didn't feel strong, I was so sad about Autumn, about SMA, about what I was going to have to do to keep her alive and well. I am doing a bit better today, but still pretty down. So many of the kids whose parents I talk to on chat are sick, and since Autumn has never been sick with more than a runny nose, I am so scared that I won't know what to do when the time comes. I'm not sure when I will need to take her to the doctor's office or hospital--god forbid. We don't have any of the equipment that these other parents use. I asked Dr. Dagnew, Dr. McCormick, and the MDA guys about it, and they said that it isn't necessary yet, but I don't want to have to learn how to use a cough assist, nebulizer, vest, suction machine, BiPap machine, etc., when my Autumn is sick enough to need it right now. How do you get insurance stuff to pay for it anyway? What if they tell me no? Will my daughter have to get sick first?
This sucks!!!!! I am so glad that I have this wonderful group of strong parents to help me with what I need, but I sure wish that there was a 'For Dummies' book about SMA made just for Autumn. I do think that we have a handle on this, and I really shouldn't beat myself up, but I just want to do whatever I can to keep her here. We have a KidKart and a standing frame, and the car seat is on the way. Power chair is next, and I can't wait for that one. I just don't want her to get sick, because I am terrified of what may happen if she does.
September 17, 2006: I am 31 years old today! That sounds so strange to say. I feel like I'm about 23, and don't think that I look 31! One guy at the restaurant where I work said that I looked like such a young mom-- way too young to have a 5 1/2 year old. He thought that I was 23 or 24, and seemed genuinely surprised that I was 30. (I didn't ask about the weight. I figured that I best not push my luck.)
Anyway, Brian & the kids gave me my presents, and then we went to his mom's house for dinner in the afternoon. She is a great cook, and we had carrot cake for dessert, which is my favorite. Both of the kids were very good, and went to bed around 7:30, Autumn without any fussing! I am so happy and so grateful for how things are, and SMA aside, life is pretty good for us.
I miss my mom though, and I always want her to know that we are doing fine. I wish that she didn't live so far away, but I don't want her to worry about how we are doing. I feel so bad that I gave my mom crap when I was a teenager, but now that I'm a mom to two of the best kids, I really want her to know that I appreciate how hard she worked, and all of the sacrifices that she made for me. My mom allowed me the freedom to explore my world and make my own mistakes, but at the same time loved me unconditionally and watched over me so that I wouldn't get myself into too much trouble. I think that I'll probably be more strict with my kids than my mom was with me (and no junky cereal!), but I can only hope that Harrison and Autumn will be true to themselves, stand up for what they believe in.
I don't want people to think that I toot my own horn, which isn't the case. I am only doing what I believe any parent in my situation should do. Everyday I try my best to make the 'right' decisions for my kids. My boss (gotta love him) has told me time and again that being a parent is the hardest thing in the world. It really isn't, at least for me--just busy. I do what I feel is right, I try to learn and improve from the mistakes that I make, and raise my kids to be decent human beings. I want to make my mom proud of me, that she raised an intelligent human being with some sense. I hope some day that my kids have kids of their own, and love them as much as they are loved.
I love you to mom. Happy birthday to you too.
September 11, 2005: Today Autumn met with Heather, who is a special education teacher from the TOTE (Teach Our Tots Early) early-intervention program. We met Heather last year, and just love her. Heather also has a form of muscular dystrophy, and she is very aware of Autumn's issues and challenges. Heather will be coming out to the house every Monday and Thursday morning for an hour. Today was our first 'official' day, and Autumn, Heather, and I worked on balance and reaching. Autumn doesn't mind the therapy sessions at all, and has so much fun playing with Heather's toys that she brings along. Autumn will be in this program until she is three, and then will 'graduate' to a regular preschool program. I'm not sure if I want her to go to a preschool for kids with special needs or a regular preschool. She doesn't seem to have any delays other than physical, but I do want her to feel comfortable with other kids, both like her and 'normal'. Hopefully in six months to a year she will get her very own power chair, and be able to maneuver it without hitting anything!
I really really want Autumn to go to the same school as Harrison. He is receiving an excellent education, it is free, and the building seems like it will be pretty easy for Autumn to navigate. Harrison will be four grades above her, but at least they will be in the same school for a few years. The school should provide an aide, as Autumn will need that to make up for the physical stuff that she won't be able to do. Guess we'll cross that bridge when we come to it, but it sure can't hurt to plan ahead...
September 4, 2006: MDA telethon day!!! Today was our first 'official' telethon weekend to support the muscular dystrophy association. I have been looking forward to it for a week, and have been driving my husband & kids nuts! Well, today we had to get up bright and early to be at the studio by 7:30--no problem for me, and I am not a morning person
When we arrived, we saw Maggie and Julie right away, along with so many of our other friends from the MDA picnic last weekend. Liz and Jana were there, as well as Dr. McCormick, and everyone was so happy to see baby Autumn. Mom bought her a little denim jumper with a hot-pink t-shirt to match her AFOs, so she was just as cute as can be. Liz and Jana held and played with her, and everyone took pictures while we waited for our turn. Mom was grabbed right away to answer phones, which was unexpected, but she seemed to have a good time doing that.
When it was our turn, we were taken into the studio and sat down on some little stools. Harrison sat next to Brian, who was holding Autumn. Mark Wilson sat in the middle, and I sat on the other side. He addressed me first, and asked what the MDA has done for us and our family. I had so much to say, but of course was pretty nervous (and excited), but I just told him that they have really helped our family to adjust to our 'new normal' and gave us great advice on what to do after the initial diagnosis. I gave special thanks to Maggie and Julie, of course!
Brian spoke after I did, and talked about how the MDA clinic provided all of the services in one place, and you didn't have to go chasing all over town for doctors. Both of the kids were very good, and didn't make a peep. We were a little nervous about Autumn, as she saw some balloons on the rear of the set, and we were afraid that she would start screaming for them!
After the set, mom was 'released' from phone duty, and we went outside to eat. One of the ladies from the Moose came over to visit with us, and told us how well we did. We ate munchies and mom dropped of her humongous donation from her friends at work. After awhile, we went back in to visit with our new and newer friends and to say goodbye. It was so much fun, and I would have stayed there all day if baby girl didn't need to be home for her nap.
The rest of the day we just hung out at home and watched the telethon. Harrison, Autumn, and I all took power naps Brian recorded our television debut for my mom to take home, and for anyone else who wanted to see it but wasn't able to.
Today was such a great day. I have no idea how much money was raised, but I'll post that when I find out. Next year, I will be at the studio all weekend helping out if they let me.
September 2, 2006: Today is like a holiday for the MDA. It is telethon weekend, and our family has been asked to be interviewed live on television! Woo hoo! I am so excited. Today Brian & I drove up to the TV. studio just to make sure that we could find it at the butt-crack of dawn on Monday. This really nice lady gave us a personal tour of the set, and showed us how things worked. It was very neat. My mom was up from Illinois, so she watched the kids while we were gone.
Here is yet another cool thing... Steve from the MDA mentioned that there was a fund-raiser near us at the Moose. He apologized for the short notice, but told us that we were more than welcome to show up if we wanted to. It was great--the weather was very rainy and yucky, but we were able to meet with Steve and Kara from MDA, and talk to the people at the Moose who were in charge of the fund-raising. They had a very lousy day, to say the least, but everyone seemed happy to meet us and see Autumn. They took a picture of our family to put in the next Moose brochure, and this really nice guy gave her Barbie, balloons, and gift certificates for both of the kids. I was overwhelmed at all of this kindness, to say the least! This one lady was in 'jail' and had to raise $2000 to get out. Well, she raised over $1000 when we got there, and still had another day to go.
I got a call from one of my mom's coworkers on Wednesday (she was scheduled to come up the next day), and Judi wanted to know who to make the checks out to if people wanted to donate to the MDA. Well, it turned out that all of the people in my mom's office got together and collected donations without my mom knowing about it, and then presented her with an envelope full of checks and money at the end of the day to be donated to the muscular dystrophy association. Mom counted the money later on, and these wonderful people donated over $400 for the MDA. How absolutely unbelievable! Most of these people had never even met Autumn.
So this weekend, I feel like I am going to cry all the time, but at least it is about good stuff. The MDA is a wonderful organization, and has done so much for us so far. I can't wait until Monday, when we can be a part of the telethon, and get together with our new MDA/SMA friends!
August 27, 2006: Yesterday we had so much fun! We went to the picnic for the MDA telethon next week to meet all of the people who would be involved and to make new friends. The best part of the day was finally meeting Erinne Williams and Liz, who takes care of her. Erinne also has SMA type II, and her mother is the second mom that I spoke to on the phone. Erinne is one of the most beautiful girls that I have ever seen, and I was so glad that she was able to come. She has a service dog. Latte, who Harrison was absolutely fascinated with. Autumn was excited too, and she let Liz hold her for a long time while she pet the dog. They weren't able to stay long since Erinne was tired, but we will be able to see them next week at the telethon!
Our best buddies, Julie and Maggie were there too. We met with Mark Wilson (from the radio show Parker and the Man), so we knew who was interviewing us. The telethon is live, so whatever we say is it, no editing! Hope I don't stick my foot in my mouth like I usually do!
When we were getting ready to go, we were able to meet with Dr. Ascadi, who is the 'expert' on experimental drugs for SMA and Duchenne's muscular dystrophy. We heard him speak at our first MDA event back in May, but had to leave early since the baby needed a nap. Dr. Ascadi told us about the current drug studies and trials, and gave us the pros and cons about starting Autumn on Depakote in February. We were told that the drug trial ends in September, and since she isn't two yet, she is ineligible. Dr. McCormick will discuss prescribing the drug off-label when we go back to MDA clinic, which is what we will probably do. I just wanted to do the study, as I know that will be of benefit to others, and since Autumn does not seem to be losing any physical skills due to the SMA, it wouldn't bother us if she was in the placebo group.
Anyway, for those who don't know, Depakote is a drug commonly known to prevent seizures. When I worked in residential, three of the boys were on it. It is well-studied and known to be safe if carefully monitored. There are two genes involved in SMA--survival motor neurons 1 and 2. Autumn was born without the SMN1, and has 3 copies of SMN2. Depakote is thought to increase the amount of usable protein produced by SMN2, and therefore increase an individual's strength and stamina. All people with SMA are born without SMN1, but the severity of symptoms depend on how many copies of SMN2. Dr. Ascadi told me that some people who don't have SMN1 have so many backup copies of SMN2 that they don't present any symptoms of SMA at all. He said that the drug doesn't work for all individuals, and that Autumn will have to have blood tests for liver toxicity every month, but I have heard good things from those parents whose kids take this drug (Erinne is one of them). It won't make her walk, but hopefully that she will continue to improve on the skills she has and it will give her that added 'boost' of energy. I'm going to ask about if it increases lung function--my #1 concern.
Otherwise, this week we have all been fighting colds. Autumn's eye has been a little drippy, but I hope that it was just from being outside yesterday, and not from pinkeye that Brian gets on occasion!
August 21, 2006: We had a great day today, but this weekend was horrible. Grace, the daughter of one of our SMA friends, died. She was 2 1/2. It makes me sick, it makes me angry, I hate the thought that out of nowhere this little baby girl...just...died. SMA killed her. SMA kills so many babies...
I don't want SMA to kill my Autumn!!!!!!! I think about it every day. I get so pissed off at those people who focus on what she can't do physically, that she won't ever be able to walk, and that she will always have to use a wheelchair and were leg braces, that she'll probably have to have surgery for scoliosis later on down the line.
So what??? Modern technology will be able to move her around, and do for her what her body can't. It can't keep her alive though--it can't keep her spirit here with me. I am so so scared. Grace wasn't 'supposed' to die either. No baby is 'supposed' to die. I know that this disease does what it does, and I was told at the get-go that one indicator of how long Autumn will live is how well she does in the first three years. So far, so good. I know there aren't any guarantees, but I feel like I should be doing so much more for her, for Harrison, for Brian, and for everyone else that has to deal with something like this.
So today I didn't clean up. I didn't finish the laundry. I woke up, bathed and dressed the kids, and had their pictures taken. This was the first of the both of them together. Autumn had a nap when we got home, and I played a game with Harrison while she was sleeping, beating him by just a hair. Brian went to a baseball game, so when Autumn woke up, we went to Bangkok 96 for Thai food--Harrison loves the tofu and hot & sour soup--and then to the park for ice cream. The part of the park we went to has a path around a little lake with some shops, and one of the shops is an old railway car with a long steep ramp going up to the door. Harrison loves to run up and down the ramp, and I thought Autumn would too. I pushed her KidKart up the ramp, and ran down again, so that she would have the feeling of flying, just like her brother did.
She cried when it was time to go and I put her in the car. I'm glad she had fun. I'm glad that I can do so much with both of them.
Ever since the diagnosis, I made a deal that I would not cry in front of these kids. I don't want Autumn to feel sorry for herself (we sure don't), and I don't want Harrison to be frightened. I try try try to live every day to the fullest, and enjoy my kids every single second.
Because you don't really know, do you?
August 17, 2005 This has been a good week so far too. Yesterday, our beautiful baby turned 18 months old. She is doing so well, and I am amazed at how quickly time is flying by. Today I took her to see Dr. Dagnew for a well-baby visit. Dr. Dagnew is the best--she is so open and willing to hear what we have to say, and addresses all of our concerns. She is so good with both of the kids, and does everything she can to make us feel comfortable. I am so glad that we found her. Autumn got a good report, and Brian & I are doing everything that we need to do for her. She doesn't need to see any specialists, and it seems as if the SMA progressing, which is so good for me to hear!
Yesterday we went to a circus in Plymouth with Elif, and had a great time. I was concerned that Autumn wouldn't be able to handle sitting in her KidKart for so long, but she was terrific. She and Harrison loved all of the acts and Autumn got so excited when the elephants and horses were brought out. The kids shared Sno-cones and popcorn, and were so dirty and tired when we got home. I love doing stuff like that, and want Autumn to do as many 'normal' things as possible.
August 3, 2006 No time like the present to start, I guess! This week was a good one, except for the constant screaming coming from our Autumn in the evening hours. Nothing wrong with her--she just likes to scream! It's driving Brian & I up the wall. The Drs. say it is good for her lungs, and she is not at all unhappy when she is doing it, but it is LOUD! Harrison screamed for about a week when he was a baby, and then he was done. Not this one. Nope. No way.
Anyway, we went to the MDA clinic for our second checkup, and Autumn received a clean bill of health. According to Dr. McCormick and the p.t. who evaluated her, she is doing amazingly well, given her diagnosis. She is still learning new skills, and is improving on the ones she's got. Dr. McCormick was really impressed with how flexible her ankles are, and that the slight contractures in her knees weren't any worse. Thanks to Barb, we have learned how to stretch and work out those parts, and do so two or three times a day. The doctor and p.t. were also impressed at how much she loved her AFOs, as it is a struggle to get the majority of kids to wear them at all! (In fact, tonight she fussed to have them put on after her bath, even though it was so close to bedtime--then I had to convince her to let me take them off without a fuss so that she could sleep!) The only things we really have to be concerned about at this time are the risks of respiratory complications. We were told to keep her away from smoky rooms, restaurants, houses, etc., and make sure that if someone is sick, that they need to stay away from her until they get better. Dr. McCormick was very impressed that she never had anything worse than a runny nose, especially since she has an older brother who is in school. Guess we're doing something right.
So we don't have to go back until February of next year--six months instead of three. So far, the disease hasn't seemed to have progressed at all, which is good. We were told early on that although we do have control over what we do with Autumn, SMA progresses on its own schedule, regardless, and an indication of how long she'll live is how well she does over the next three years or so. Well, we're halfway through the second year, and she is doing great, according to the experts. I will be on pins & needles this winter though, and I am not one of those nervous moms who freaks when their kids get sick. Hell, Harrison never even went to the doctor for a sick-baby visit until this year--and he had bronchitis.
I hope she'll be like me, too feisty to get sick. I can handle my kid not walking, but I sure can't handle the thought of her not being with me...