Grubbs Family Blog

Speak Up

2010-09-20T16:40:00.000-07:00

I have been thinking about Aulton's speech issues for awhile now. His lack of speaking ability was the main reason I had concluded he had Autism. As I have been mulling this theory around, I finally got up the courage to ask his speech therapist, Miss Marisa, what she thought. I had dreaded talking to her about this particular issue because I thought she might have reached the same conclusion. I already feel like I'm drowning half the time. I just wasn't sure I could deal with another diagnosis, just as I was getting a really good handle on the Muscular Dystrophy diagnosis. I don't freak out when people ask me questions or stare at us all the time, anymore. I didn't even over-react when an unusually rude woman asked why I was "allowed" to have a handicap sticker, after I had already put Aulton in the car. I thought the "I love someone with Muscular Dystrophy" bumper sticker warded off those kinds of questions. Anyway, Marisa was surprised that I had reached the conclusion that Aulton had Autism. We talked, at length, about some of the other characteristics that Aulton displays that fit within the Autism spectrum. Besides his lack of speech, I was concerned about his communication with other kids. He does not interact much with other children, but that is common, she said, for kids who have difficulty communicating. He knows, at least subconciously, that he is different and I'm guessing he is quite intimidated by peers' speech and movements that are quicker and more advanced than his own. He does interact with his sister, who is much smaller than him and with a classmate he sees nearly everyday and who we have playdates with. This particular child is less ambulatory than Aulton and is also non-verbal. Aulton also does well with adults, probably because they were his earliest friends due to various therapies he has been receiving since he was 4 months old. Other than those two things, Aulton gives good eye contact, is VERY affectionate and doesn't display many other common Autistic signs.

Aulton is unusually intuitive and will interact with only those who have a genuine interest in and love for him. I think that is one of the precious gifts that God gave him to help me determine who I can trust with him. He is so very close to the veil and I have had some very tender experiences recently that have touched my heart and strengthened my testimony about God's love for him and how very precious Aulton is to Him.

Marisa told me that Aulton probably has speech apraxia. This is good news to me. It's the other thing I had been considering, although I didn't have a name for it. Children (or adults) with apraxia have a hard time combining sounds to make words, although they have the vocabulary. Their minds have difficulty processing the individual sounds to make the words they already know. Aulton knows A LOT. I'm not saying he doesn't have cognitive delays, because he does. I just wish I would give him more credit for the things he knows. He is verbal, it just doesn't make much sense and he is making new sounds all the time. If he has apraxia, it's not that he doesn't have the ability to say words, it's just going to take him a lot longer to get them out because his mind needs more time to process how to fit the sounds together.

The positive things about apraxia are that I'm doing most of the "treatments" already. Children with apraxia are supposed to see a speech therapist at least once a week. We go twice a week. The parents need to follow a very consistent home routine. I do speech therapy exercises with Aulton everyday, after lunch right before he naps. He will benefit from an augmentative device, which we are in the process of getting. He chose a SpringBoard Lite and I'm sooo excited about it! His speech will also be improved by his parents' consistent urging for him to repeat sounds that we make during our daily activities. That is something I have done with him and with Lyla since their births. Lyla's vocabulary is quite extensive for a 14 month old. She says; Lyla, Aulton, Mike, dad, mama, cat, dog, rabbit, Dora, done, bubble, pop, bye, good-bye, hello, hi, yeah, yes, no, uh-oh, oh, outside, go, car, wow, whoa, and probably some other words I'm forgetting. So, since all three us are best buddies and hang out together all the time, he must be processing the same information as she is, he just can't say the same things. Lyla also identifies a lot of objects that she hasn't been able to say yet. Aulton can do this, as well. I know from Aulton's therapy that he knows how to answer where, what and who questions, knows colors, body parts, foods and can identify opposites, among other things.

So, it looks like my theory about Autism has been shot out of the water. Hooray. If it comes up in a few years, hopefully I will be in a better place to deal with it. Right now, I'm encouraged by the apraxia theory and am going to continue treating Aulton as if that is what is going on.

To see a quick video from the Telethon, for those of you who aren't on Facebook, go to http://www.youtube.com/watch?v=DPkRUiWElTE
(I couldn't get it to load directly onto the blog.)
You will note my hopeful attitude about Aulton's eventual speech. I'm so madly in love with him! He is the one of the three most important people to me on this Earth and I would walk through fire for him, but the things I'm doing on a daily basis mean much more than that, I think.

Aulton Updates

2010-08-16T16:49:00.000-07:00

I'm not positive anyone reads this blog anymore and I have so little time, but thought I should post a few updates about Aulton, as he's had some changes in his health recently.

Sleep: His most recent sleep study confirmed that Aulton does indeed have Periodic Limb Movement Disorder, as I guessed (literally) years ago. He was asleep for about 8 hours and moved his legs 147 times. Some of those disturbances were jolting or painful enough to wake him several times every hour. Also, he has mild sleep apnea. The doctor who read the report was nice enough to call me to explain the results, as well as talk about possible treatments. He gave me some options to think about and I'm still thinking about them, so I will have to update that later.

Immune System: We found out a few months ago that Aulton has basically no immune system, his immunoglobulin levels were very low and some were absent. He was tested for all the common strains of pneumococcus and we found out that he had no defenses against any of them. Thank goodness for an explanation of the 5 months of sickness he had earlier this year. The immunologist gave him a pneumo-vaccine and fortunately when we went to the doctor today, it showed that his antibody levels have gone up. They are not in the normal range, but pretty close and hopefully, they will continue to go up as the vaccine works in his body.

Orthotics: Aulton is still toe walking a lot. He is still tolerating his day time orthotics and still hates the night splints. He is getting refitted for new day and night orthotics in a few weeks. I wish I could say we were returning to the lower SMOs, but I think he will be in the tall AFOs for a few more years.

Speech: Aulton is attempting more sounds, but still has few words. I'm fairly certain he has autism, but if he does, it doesn't change anything. He's still Aulton, I still love him and am doing everything I can to help him progress. He is going to be evaluated for an augmentative communication device in the next few weeks. This device can be programmed to Aulton and will give him the ability to say hello to people, request foods, activities, etc. It has more options than the PECS he currently uses.

Aulton is still happy, loving and the sweetest, cutest four-year-old I have ever met. I thank God for trusting me to raise him.

Wally's World

2010-04-23T12:47:00.000-07:00

I named this post after a paper I wrote in 9th grade, with the same title. I wrote it about my grandpa, Wally, and how I was so proud to be a part of his world. My grandfather, passed away on Sunday, April 11, 2010. I found out as I was driving to drop off some dinner to a friend who had just had a baby.

I'm so grateful for him and his passing has given me the chance to think about what he meant to me. My grandpa always told me exactly what he thought without sugar-coating anything. That part of his personality was sometimes difficult for me to handle. However, he taught me a lot and most of my memories of him are fond.

My favorite memory of him involves his beard. When I was a little girl, my family would visit my grandparents often. We didn't live far from them and I remember sitting on his lap all the time, rubbing my face against his whiskers. I can still feel it and smell him. My grandpa smelled like the combination of Irish Spring soap, aftershave and spearmint. When I was at their home, I would nurse Lyla in his office and just sit in there and cry. The whole room smelled just like him. I miss that smell.
I am so glad that he got to meet both of my children. Aulton has been sick, so he has been staying home from school and therapy this week. As I have been teaching and playing with he and Lyla, I have pictured my grandfather watching us. I think he would proud of the job I'm doing and it makes me want to try a little harder to be more patient and loving.

I feel my grandpa in my heart. He will be there until I'm able to rub my cheek against his again.

My "Heard"

2010-03-07T13:16:00.000-08:00

Something very fun has been happening at our home lately. My children are filling the air with "ba" sounds. For Lyla, this is a typical sound. According to the "chart" that is supposed to tell me when every "normal" thing happens, babies typically start making "b" sounds between 7 and 12 months. It also says she is supposed to start shouting for attention. Umm, I guess she's ahead of the curve on that one.

Aulton, on the other hand, has never been able to make that sound. Myotonic Dystrophy gives children weak facial muscles, which explains Aulton's very kissable, chubby cheeks. The hardest sounds to make are "b", "m" and "p" because a person must bring their lips together to make those sounds. I have been consciously working with Aulton on producing a "b" sound since he was 14 months old. In fact, we work on it EVERYDAY by reading, "Brown Bear, Brown Bear." We also work on it in every speech therapy session. This probably doesn't seem like a big deal to the outside observer, but trust me, it is! This sound, combined with other sounds Aulton already makes, will eventually lead to words and I want so badly to know what my little boy is thinking.

I can't recall the first day it happened, but I remember hearing Aulton in the back seat, saying, "ba, ba, ba". I couldn't believe it. It made me so happy.

Around the same time, Lyla starting making the same sound. I don't know if one inspired the other, or if it was merely coincidence, but I'm so excited for and proud of both of them.

I love my little sheep. BAAAAA!

Where to Begin?

2010-01-05T13:23:00.000-08:00

It has been seven months since I updated the blog. At first, it was because I was too busy to breathe, then I felt like it was too late. However, the new year is upon us and I thought an update was in order and possible. I'm working on getting Aulton's MDA Stride and Ride page up and I like to include this address for those who would like to check on his progress, so I can hopefully fill you in on those changes, as well as many of the other things that have happened to us during the past few months.

LYLA
First, our little girl was born. We are so excited to have Lyla Emily in our family. Lyla was born on July 10, 2009, 12 days before she was due. I was so thrilled when my water broke because I thought I was going to die from the heat and the doctor had told me two days earlier that it would be a few more weeks. During the last month, I would take Aulton to the nearby supermarket just so we could walk down the freezer aisle. Being 9 months pregnant during an Arizona July, while carrying a 40 pound little boy is not fun, but, of course, I would do it all over again in a heartbeat. Her birth was EASY! I was only in real labor for a few hours (the entire process was only 14 hours). I dilated from a 4 to a 10 in 20 minutes and she literally slid out. After 26 hours of labor with Aulton I kind of deserved to have an easy one. The most special thing about that day is that she was born on Mike's sister, Emily's birthday. Emily, who is in Heaven, sent Lyla to us on that very wondrous day.

Lyla started to get colic around 2 months, which is something that I have never experienced before. Aulton was a very "easy" baby, who rarely cried. It was exhausting. At 3 months, 1 day, it was like a switch was turned off and the crying decreased. I could put her down and actually go to the bathroom without Lyla completely losing control.

She has added so much to our family. She is very funny. Right now, she is sitting on my lap running her feet over the chunky, blue bracelet I'm wearing. She is a bit high maintenance, but easy going when it counts. For example, she sleeps great in the car, which is important with our schedule. She is a great eater and is generally very jolly.

She is growing up very quickly. She rolled over "early", started crawling already, babbles like crazy and is sleeping through the night (finally!).

OUR NEW HOUSE
My parents, who plan to move to Phoenix upon retirement, bought a house in Gilbert as an investment and are so kind they are letting us live in it. Of course, we pay the mortgage and utilities and everything you normally pay for. We really needed to move to get Aulton into a school in Gilbert and have a house with a pool for his physical therapy needs. We love the new house, it is bigger than our other house and a better set up for our little family. We have a great tree in our front yard that actually changes colors and loses it leaves, bringing me a little bit of the Colorado, Wyoming and Utah Autumns I miss so much.

AULTON
Aulton continues to be a huge blessing to our family and brings me so much joy. He just had his 4th birthday on Christmas. As I have been reflecting on my life, as I often do during a new year, I realize how lucky I am to have had him be a " baby" for so long. Of course, I enjoy watching Lyla reach milestones and thank God everyday that she is "healthy". Aulton's journey has not been easy and it won't ever be, but every accomplishment means so much because he works so hard for all of them. I also get to spend time working with him because things don't come as naturally to him as they do to a typical child. Sometimes, it is very hard work, but most of the time it is fun and always rewarding. I really cherish his milestones because the don't come quickly or easily.

He attends preschool everyday and he absolutely loves it! I adore his teacher and she doesn't underestimate his abilities, which is invaluable. His peers are similar to him, in that most of them are fairly ambulatory, but have limited speaking abilities. Gilbert School District is well-known throughout the state for having excellent special needs programs and our lives have been blessed by this change in Aulton's life.

At any point in the year, Aulton attends between 4 and 7 therapies each week outside of school, where he also recieves PT, OT and speech. Right now, he only has four (two speech, swimming and horseback riding, which he uses as OT). He receives music therapy through ASU, only when school is in session. So, we are waiting for that to start again and we decided that our Fridays were getting too busy, with speech, school, gym and horses. So, we have decided to discontinue attending gym for awhile, especially since Aulton's gross motor skills are his best area.

Aulton has made great strides in speech. He uses a system called PECS (I'm not sure what the acronym stands for). He uses little cards with pictures to communicate his very basic needs, ie what he wants to eat, what he wants to do, etc. I'm using this program to potty train him. My goal is to have him potty trained by the time he is 5. That way, if it happens earlier it will be a nice surprise. It is difficult to toilet train a child who doesn't speak. I will have to do another blog entry to explain how I'm doing it, if anyone is that interested. I change between 7 and 15 diapers each day. The other day, I changed 7 in 15 minutes. That was fun. It will be over someday...

From his speech therapy sessions, we have ascertained that Aulton knows all his colors, animals, body parts, most verbs and can answer "where" questions (example: does a bee live in school or in a beehive) He picks the correct picture 90 percent of the time. I'm working with him on numbers right now, as well, using the same types of "games" he does during speech.
To strengthen Aulton's facial tone, I do mouth and lip exercises with him everyday and he uses special straws once a day. This also needs extra explaining in a different blog entry if anyone is interested in the specifics.

Aulton has a few words and is attempting to verbalize more frequently. He also makes more sounds than he used to, which is definite progress and improvement. At his last neurology appointment, I asked his neurologist (who specializes in muscular dystrophy) if Aulton would ever talk. He said most CMMD kids talk between the ages of 5 and 7, so I'm optimistic.

Aulton's sleep has improved slightly, we have an appointment with a pediatric sleep specialist in March. His sleep study was not very valuable, as he was diagnosed with "unexplained insomnia." REALLY?!? (for all you SNL fans).

In short, everything is going really well for our family and I can't imagine how 2010 could be better than the previous year, but it's all about outlook and we plan to make this the very best year yet.

Thanks to all of you for your support of and prayers for Aulton and our family. His myotonic page will be up shortly and please donate if you feel so inclined. Researchers are so very close to a cure for myotonic and duchenne muscular dystrophies, but they can't do the work without the funds. (All donations through Aulton's page go directly to myotonic dystrophy research).

Sleep Study

2009-05-19T09:40:00.000-07:00

Aulton is scheduled for a sleep study next week at Banner Children's. I am excited that we found a great doctor who may be able to help us with this on-going problem. It's been over a year that Aulton has been waking in the middle of the night for no apparent reason. After doing a bit of research, I found out that congenital myotonic muscular dystrophy kids have problems with sleep apnea and with periodic limb movement (plm), which is similar to restless leg syndrome. The difference is that it can also affect arms, and in rare instances, other muscles groups (ie bowels, etc.). The sleep study is mostly being done to rule out apnea, which he likely doesn't have, as his airway and palate are not affected by CMMD (a miracle in and of itself). The doctor also feels his problem is related to PLM. He was up at 3 a.m. last night and didn't ever go back to sleep. For those of you who know about RLS, it is very uncomfortable. For Aulton, it seems, it is painful enough to wake him and keep him awake. A diagnosis will be helpful, but most children with CMMD don't start experiencing PLM until they are adolescents. The doctor is unsure of how, or if, we will be able to treat it. The medication they use is not recommended until children or 15 or 16. It is much too strong for a three-year-old. The reason I'm posting this is because I would appreciate it if you would keep him in your prayers. I will be happy with a confirmation of the problem, but happier if he doesn't have to suffer in pain for the next 12 years, especially since he can't tell me where it is hurting. Thank you!

Little girl update

2009-05-11T15:49:00.000-07:00

Unfortunately, I'm growing a very stubborn girl who won't let me see her face. But, I think she just wants me to be surprised by how beautiful she is. We had our third trimester ultrasound two weeks ago. She is in the 70th percentile for her gestational age, so just a little over 3 pounds. The funniest part about the ultrasound was the size of her femurs (thigh bones). They are measuring in the 90th percentile. She still looks completely healthy and we feel very blessed to have this little "dancer" coming to our family. I think we have settled on a name, as well. Lyla Elizabeth should be here in about 10 weeks. *disclaimer-name is subject to change :)

Orthotics update

2009-05-11T15:35:00.000-07:00

Aulton is still doing incredibly well with his night splints, so much so that we have started to put him in his new taller orthotics for half days. I don't really like them because people stare at them and it is so much more difficult to get him in and out of carts. He falls more frequently and tires more easily. However, they are working. He is walking with flat feet more often, even when they aren't on. I still haven't sent him to school with them because I know they are uncomfortable and sometimes his teachers don't read his cues as quickly as I can, which is understandable given the amount of time they spend with him compared to the amount of time I do.

His sleeping problems have returned and we went to see a pulmonologist last week. As soon as insurance approves the doctor's recommended sleep study, we will get it scheduled. The doctor believes Aulton has something called periodic limb movement (PLM). It's similar to restless leg syndrome, but can happen in a person's arms and other muscles. I have read about it and this explanation seems very probable. The sleep study will rule out other things that could be causing his night waking. If it is PLM, no one is sure what steps we will take from the diagnosis. There are teenages with CMMD who suffer from PLM and take medication, however the medication is too strong for a child. So, we will pray that if this is the diagnosis, his doctors will be able to find something to help him get more rest.

A Blessing in Disguise

2009-04-09T11:25:00.000-07:00

Last month at Aulton's orthotics appointment, we learned that Aulton's current orthotics (SMOs) were no longer "working." He walks on his toes all the time. In the beginning, the toe walking was actually a good thing: he was giving input to his calf muscles to make them work. However, he liked that input so much he decided he would become "my little ballerina" and tip toe 1oo% of the time, even in his shoes and orthotics. His heel cords are so tight his PT cannot stretch them without hurting her arm. So, the orthotist gave me several options; continue what we were doing, which would likely result in casting and surgery, get night splints and use the SMOs during the day, or get night splints and new, taller orthotics (AFOs). We opted for option three because it made the most sense and will be the most beneficial in the long run. The AFOs and night splints make it virtually impossible for him to toe walk, thus improving his pelvic, core and anterior tibia muscles.

I was pretty devastated, though. I knew the adjustment would not be easy and would likely be painful for him. Plus, a lot of other stuff was going on with him in school and therapy. I just felt completly overwhelmed. However, Aulton was blessed with an amazing personality. He is very easy going and the orthotist presented a plan that was quite conservative. We started slowly, we had Aulton wear the night splints only for a hour on the first day. Every night we increase the duration, which increases the stretch. Last night we were able to get nearly 3 hours out of him before the crying started and broke my heart.

We will see the orthotist next week to determine whether the night splints have created a great enough stretch to make wearing the AFOs during the day beneficial.

While all of this has been challenging, something very good (besides the longterm benefits) has happened. Aulton has gone back to sleeping through the night. It is a struggle to get him to fall asleep when he is so uncomfortable, but once the splints are off, he is out and out for good. This morning and one other morning this week, he woke in the 4 o'clock hour. In previous days, he would have stayed up until Mike or I went to get him around 6 a.m. This morning, however, he went right back to sleep and slept until 6:20. It's practically a miracle. His OT at school even commented on how much better Aulton did in his session. I told her it was because he was getting an additional 2 to 4 hours of sleep than he used to. Obviously, he is more alert than he would have been operating on 6 or 7 hours of sleep. As you may recall from a previous post, he has been waking up between the hours of 1 and 3 a.m. as if it was time to start the day.

Hopefully, he will continue to sleep well and he will continue to adjust to his new orthotics.

Big Changes

2009-03-03T11:50:00.000-08:00

Aulton has always been a really busy kid. He has had various forms of therapy since he was six months old. When he started school, his in-home/private services were discontinued, as he receives therapy at school. After he turned three, however, he was eligible for a state program called Long Term Care. He did not qualify for this program, which helps pay for medical expenses and therapy, when he was 18 months old. Now that he is three and is still delayed, he did qualify and we are going to start having private therapy again. I'm so very excited to start these services again. None of therapies will be at home, as Aulton pretends to fall asleep when the therapists come over. We will be doing therapy at clinics and in different locations to keep things interesting for him. If we go somewhere for therapy, it doesn't seem like it is a much work for him. Here is a look at our schedule:

Monday: school 9-12, speech 2
Tuesday: school 9-12
Wednesday: swimming (PT) 11:20
Thursday: school 9-12, music 1-2
Friday: speech 8-9, gym (PT) 9:30-10:30

He is also going to start hippotherapy (horses) soon and will use it for occupational therapy. I'm not sure what time will fit in with the busy schedule, but we will make it work.

At school he gets speech on various days, physical therapy on Mondays and occupational therapy on Thursdays. So, he will soon be getting 8 therapy sessions each week. We are so blessed to have these services in our lives.

We're Expecting!

2009-01-15T14:47:00.001-08:00

It's A Girl!

In early November, we decided to try in-virto fertilization for the 4th time. We were shocked when we found out it had worked. The road has been a bit bumpy, but has smoothed out and things are going wonderfully. My ultrasound tech was confident that I'm having a girl and I have felt, since the beginning, that that is the case. We are having trouble picking just the right name for the little one, but it will come to us. Here's a picture of me at just over 12 weeks, with a little baby bump.

I have also included pics of the ultrasound. They are not crystal clear, as I don't have a scanner and used my camera to duplicate them so I could post them. The second one is a bit harder to read, but so cool. I get 3-D ultrasounds every once in awhile, as I'm seeing a perinatalogist (a high risk doctor).

The baby is due July 22. I am trying my hardest to help Aulton prepare to share his mother. We talk about the baby all the time and how lucky she is to have Aulton as a big brother. We read books and talk about all the things babies do. I'm so excited to experience the joys of being pregnant again (now that I'm in my second trimester, of course), as well as raising another child.

Christmas, Christmas, Christmas

2009-01-15T14:19:00.000-08:00

We went to Elko, Nevada to celebrate Christmas with my parents. It was sooo cold, but Aulton didn't seem to care. Mike made a little track around the front yard to pull Aulton's sled on. Mike also would pull the sled around the neighborhood. I hate the cold and snow so I just snuck out and snapped a few pictures, before heading back in to enjoy my hot cocoa and watch from the window.Aulton got spoiled for Christmas, but did not care. Last year, he was into opening presents, but not this year. It seems anytime we want him to do something, he wants to do just the opposite. So, depending on how much his attitude changes by this time next year, he may just get one or two presents and we will call it good!

My parents did get him a wonderful swing set, while they were here visiting for Thanksgiving. My father-in-law and Mike put it up, as my father ended up in the hospital for almost the entire visit. I'm thankful he is fine and for Elmer generously giving up a Saturday.
Aulton's birthday went much the same as Christmas. Even though Christmas Day was his actual 3rd Birthday, we celebrated on the 26th because he was just too tired. His cake was covered in Swiper (from Dora the Explorer), but he wouldn't even look at it, because we wanted him too. He did, however, partake.We had a wonderful time in Elko, watching movies, playing games, sleeping in (thanks grandma and grandpa), entertaining Aulton, shopping, eating, eating, and eating. It was truly a joyous holiday!

The Polar Express

2008-12-10T14:04:00.000-08:00

We took Aulton to Williams, in Northern Arizona, to ride the Polar Express. He doesn't really get Christmas or Santa Claus, but we were so glad we went. He was so happy the entire time. We're not sure if it was all the people, the lights or the joyous atmosphere, but we will definitely go again.

Special Delivery

2008-12-10T13:45:00.000-08:00

Halloween was a very busy time for us and we haven't really slowed down since. Aulton had a party in his classroom and the kids carved pumpkins. Aulton wanted nothing to do with it, he just wanted to leave since mom was there. His teacher, Miss Lindsey, did her best to encourage him.

He also participated in his school costume parade. He got so many compliments on his cute UPS uniform.

We also went to our church Halloween party that week and, of course, did some trick-or-treating around the neighborhood on Halloween night. We were lucky enough to have Aulton's cousins, Karsyn, Adyin and Fynley join us! We love Halloween and I was so happy that Aulton kept his hat on half of the time!

A "Fair" Day

2008-10-16T13:50:00.000-07:00

I have been begging Mike to take me to the State Fair since we moved to Phoenix, 3 years ago. He's not one for crowds or standing out in the heat that sometimes accompanies the month of October in the city. However, this year, he surprised me by sending me an e-mail about Dora the Explorer appearing at the Fair.

Since our son happens to be obsessed with and completely in love with the cartoon character, Mike decided Aulton needed to see she and Boots the Monkey in person.

So, we made a day of it.

We took Aulton on several rides, we visited the farm house where Aulton rode on the John Deere rocker, he and I pretended to be farm people and he and his dad got thrown in jail,

Mike played a basketball game and won Aulton a Univeristy of Arizona basketball,

and we, of course, ate (way too much fried food). We had a really fun day and it wasn't even that crowded and the weather was absolutely beautiful!

Growing Like a Weed

2008-10-08T10:52:00.000-07:00

So many people have been telling me how tall Aulton is getting. Obviously, when you see your child everyday you don't notice those subtle changes. However, the other day he accidentally hit his head on the kitchen counter, which is pretty high. I decided I better find out how tall he really is. I got out my tape measure, took off his shoes, marked the top of his head on the wall and found out he IS tall. Aulton is now just a 1/4 inch shy of 40 inches. Today I weighed him, to get the whole picture. He is 37 pounds . . .still my tall and skinny guy.

My Baby Started School

2008-09-30T15:03:00.001-07:00

Aulton officially started school September 29th. He goes Mondays, Tuesdays and Thursdays from 9:15 am until 11:45 am. It is a little bittersweet, as I know that he needs someone more trained to start teaching him, but I still feel like he is too little to go to school. Honestly, he's not even three yet. However, he was very excited to go the first day. He didn't even cry when I left him. He is unwilling to wear his backpack, so we will keep working on that.

His teachers feel he is adjusting well, but he definitely needs more time to get used to the routine and schedule. And he is giving those teachers a run for their money. Today (Tuesday) when I picked him up, he has throroughly convinced his teacher, the two aides and the physical therapist that he is unable to walk. He falls down every couple of steps, they say and will slump to the floor as soon as they take his hand. So, they have started transporting him in a wagon. I tried to explain that Aulton is smarter than he is sometimes given credit. When he started to tire of therapy visits, he pretended to fall asleep. He was very convincing. Now, he has found another way to avoid work. I'm glad he is so creative, but I'm sure the jig will be up soon!

Aulton's Sleep Schedule is a NIGHTMARE

2008-09-16T14:56:00.000-07:00

Don't let his peaceful expression trick you. In this dream, he's plotting ways to make his mother crazy. I'm kidding, of course. I'm just frustrated with Aulton's sleep schedule and I have been for the last several months. He believes he only needs 7 or 8 hours of sleep a night. I disagree. And so do experts!! We have tried several things to get him to sleep a little longer including

putting him in his big boy bed (which he hates at night, but will occasionally nap in)
blocking all light out of his room
installing a white noise machine in his room
taking him to the pediatrician for suggestions
giving him melatonin at night
manipulating his schedule for earlier bedtimes, shorter naps, earlier naps, later bedtimes, no naps, etc.
buying a sleep book
letting him listen to a CD to fall asleep

Nothing has worked! Aulton generally wakes at 4:30 or 5:30 am no matter what time he goes to bed. Lately, however, he has been waking between the hours of 12:50 am and 3:30 am wanting to get out of bed and start the day. This makes his nap schedule really strange and unpredictable, which I hate. It makes it very difficult for me to plan our day. Also, he ends up being pretty tired more often than a 2 1/2-year-old should be because I really can't let him nap all day.

His saving grace, along with the fact that he is so darn cute, is that he is fairly good at entertaining himself when he does wake up early. I'm hoping the start of preschool in a week and half!! will make a big difference. We'll have to wait and see.

Aulton's FAVORITE Place

2008-08-13T14:30:00.000-07:00

In Arizona, kids don't run through sprinklers, they play on spash pads. Little parks all around Phoenix install fountains for kids to play in. Some people really hate them because the water recirculates and can be kind of gross. However, my son LOVES them. And usually Aulton gets whatever he wants. So, we make a trip to the nearest splash pad almost weekly.

Grubbs' Family Reunion

2008-08-05T14:18:00.000-07:00

We recently were able to take a short vacation north of Phoenix, in the White Mountains. It was just as beautiful as everyone says, this picture doesn't even capture the serenity in Pinetop/Lakeside. We rented a beautiful cabin and guest house with Mike's entire family. We hiked, played in creeks, relaxed, played games, went to the park, visited, ate, tickled nieces and nephews and gave lots of hugs to the family members we don't see often enough.

Alicia and I are hanging out with the "sweet" nephews. I have to use that word now, because in a few years they won't let me. Aulton loved being outside, even if he was just hanging out with mom in the hammock. Eryk pretended like the hammock was a car and entertained us for hours. Alicia is holding baby Isaac, who is content with everyone and everything. If you notice anything strange about our hair, it's because our beautiful, talented niece, Aydin, was helping us accessorize with wildflowers.

This vacation was really special because everyone was there, except for our nephew, Adam, who is serving an LDS mission in Louisiana. We missed him, but he couldn't be doing anything better right now. Here are all the grandkids (Brandon, Aulton, Ethan, Isaac, Lauren, Diane, Fynley, Karsyn, Aydin, Anna and Eryk) and a few other highlights from our trip, including hiking and playing in the White River. Also, don't we look cute as a family of four?? Still wishing for a baby and loving the ones that I'm around.

Aulton's 2008 Schedule

2008-02-21T14:18:00.001-08:00

Monday - Developmental Specialist
Tuesday - Speech Therapy
Wednesday - Physical Therapy
Thursday - Music Therapy
Friday - Occupational Therapy

As you can see, Aulton keeps my life very busy. I'm so grateful for all of his wonderful therapists and the things they teach me to help him.

New developments:

Aulton is getting glasses. Aulton sees an eye doctor every year to check for cataracts that can result from having myotonic dystrophy. The doctor discovered that Aulton is far-sighted in both eyes, a result of genetics. His right eye is more severely affected than his left eye. If we chose not to get the glasses, he could have lost sight in his weaker eye. The doctor is confident that his fine and gross motor skills will improve once he adapts to the glasses. I'm excited to see what happens!

Aulton has recently started to lift a ball above his head, he's also throwing, catching and kicking balls. In music therapy, he has been using both hands to play the metalaphone and to beat drums. In the past, his left side has always been much weaker than his right. So, this is a great step for him.

Last week in speech, Aulton said "go" and "t" for trains. Yesterday, he said "ca" for his friend Cal. He is always making new sounds. I can't wait for him to gain more facial muscle strength and confidence to talk more.

Aulton is Walking!

2007-09-27T14:06:00.000-07:00

Aulton took his first step June 26, and now more than three months later, he is walking from room to room and gradually gaining confidence. I am so proud of him!

Aulton's schedule

2007-09-27T13:43:00.000-07:00

Monday - Developmental Specialist
Tuesday - Speech Therapy
Wednesday - Music Therapy, Physical Therapy
Friday - Occupational Therapy

Our Story

2007-09-27T13:38:00.000-07:00

A Smile
By Nicole Read Grubbs

I used to judge whether a mother did a good job based on how often her baby smiled. I thought smiles and laughter were the only ways to gauge a child’s happiness.

I used to unfairly criticize mothers who seemed to have chronically “unhappy” children, never taking colic into consideration and assuming the mother just wasn’t trying hard enough. I believed this well into adulthood. Then, I had a child who couldn’t smile.

Of all the things young girls aspire to be, I was always sure I would be a great mother. After all, babysitting was my favorite Friday and Saturday night activity and I was every neighborhood kid’s favorite sitter.

My friends told me lots of things I didn’t believe. They said that I was pretty, smart and cool. But, I believed them when they told me I was going to make a good mom. Many adults, including several of my teachers, complimented me on my nurturing abilities. I loved children so much, I even hoped to have eleven of my own.

Amazingly, I got through those teen years, went to college and fell in love. When the time came for me to marry, I did everything right. I married Michael Christopher Grubbs on July 29, 2000. He was the perfect man. He had been my best friend for four years. He was loving, intelligent -- he eventually became an attorney – and, of course, he would make a great father.

We waited the right amount of time to think about having a baby. We had been married more than four years, I had earned a bachelor’s degree and worked as a reporter at a large newspaper. I knew I wanted to stay at home with our child and didn’t want to have any regrets about receiving a degree I never used. I also wanted to have something to fall back on, in case my life didn’t turn out to be a fairy tale. I took perfect care of myself, watching what I ate, never consuming alcohol, drugs or cigarettes, exercising and taking prenatal vitamins and folic acid for two years prior to conception.

At 20 weeks along, the day of our 5th year anniversary, we found out we were having a boy. My husband was overjoyed and I was also very excited. Everything on the ultrasound looked “normal” and we were relieved.

My pregnancy went well, with only minor problems, including a lot of heartburn and Braxton Hicks contractions that occurred throughout half of my pregnancy.
The momentous day came. I knew it was going to be perfect. I hadn’t even gone as far as to consider what I should do if I had to have a C-section. I just didn’t expect any problems. After all, I was made to be a mother.

I was due on the 20th of December, 2005, but that day came and went, as did the next and the next and the next. On December 24, my husband and I went to the hospital, so they could perform a biophysical exam to monitor the baby’s respiration, heart rate and measure the amniotic fluid surrounding him. I was admitted right away when it was discovered there was only a little over 2 cm of fluid. A woman is automatically induced when there is 5 cm or less. Low levels of amniotic fluid increase a woman’s risk for complicated labor, but more importantly, the baby’s movements and labor contractions can cause compression of the umbilical cord.

The nurse started my labor by using a gel to soften the cervix, and later I was given pitocin through an IV. I really wanted to have the baby without pain medication, but after six hours of intense contractions that were 1 ½ minutes apart, I had only gone from 2 to 4 cm. I relented and accepted the epidural.

I slept a little bit, and was able to relax, which allowed my body to do everything it needed to get ready for the birthing process. I was ready to have my baby. My water broke at 4 a.m. on Christmas morning, but I wasn’t sure it had because no fluid came out. My nurse said because there was little to no fluid left, I would only feel a popping sensation, not a gush, like some women do. I was ready to push at 5:30 a.m., but the doctor on call wanted me to wait until my doctor, who would be on call at 6 a.m., came to the hospital. When my doctor finally arrived at about 7 am, he told me to start pushing and at 8:08 a.m., 26 hours after being admitted to the hospital, I received my Christmas gift: little Aulton Joseph [HAC1] .

First, I spotted all of his dark hair. Then, I saw the look of shock on my doctor’s face as he clamped the umbilical cord with his hand. Aulton was probably lying on the cord during part of the labor and as I pushed him out, the cord ripped. I kept waiting to hear his cry. It never came.

I delivered a purple, lifeless baby who was rushed to the neonatal intensive care unit after a single glance from me. My husband accompanied our son to the NICU, while I lay in the hospital bed crying. My mother, the perfect model of motherhood, lay down beside me. She didn’t say anything, she didn’t have to. We both knew that my baby, her first grandchild, was very sick. She just held me while I wondered what I had done wrong

I had to wait for the epidural to wear off a little bit before I could see my son. After about an hour, my husband lifted me out of bed and put me in a wheelchair. I was astounded at the number of wires and cords that were attached to my 6 pound, 14 ounce baby. He had oxygen tubes in his nose, an IV in his forehead and a little band on his foot to measure his pulse. Later that day, a nurse inserted a feeding tube into his nose and down his throat. That was the most difficult thing for me to watch. It was the first time I had ever heard him cry.

When I first saw him, he looked so fragile. I really wanted to hold him, so the nurses helped us move all the equipment so that I would be able to. As I gazed at this precious child, I didn’t know how it was possible to feel so much awe and fright at the same time.

The day of the birth, a geneticist came to see us and asked if we had any birth defects in our family, which we might have passed on to Aulton. There were none that we knew of. Aulton’s pediatrician, Dr. James Leiferman, also came to see us and explained that they didn’t know what was wrong. They had a few theories and would test them out. The doctors tested his chromosomes, gave him an MRI, did an ultrasound of his brain, performed an EKG and ECG, and tested every other possible thing to find out why our baby was so sick. Each day we were updated on the tests he was going to have and each day we received the same news- the results were normal. We were both relieved and confused. Most of the NICU nurses said he probably was recovering from the traumatic birth.

It seemed they were right, each day he improved, some wires were detached, and he was eventually moved to a less sterile “crib.” He started breathing on his own and had his feeding tube removed.

Aulton, like most children, was resilient and fought hard. I also fought hard to get him to come home, which he did New Year’s Day. Initially, we had a lot of doctors to see because he had been in the NICU. They monitored his weight, his hearing and his bones – some of which looked like they might have been fractured during delivery. The doctors noticed that he was not hitting important milestones like he should. He started receiving physical and occupational therapy when he was just four months old. I thought if I could just make it through these appointments, soon I would be able to be a normal mother. I would wake up in the morning and not worry what appointment we had that day, but would actually be able to play with my baby. My husband and I felt sure Aulton’s delays were a result of his traumatic birth.

As 2006 progressed, the appointments did wane. We continued to see therapists and a few doctors, including his pediatrician, who remained determined to find out what was wrong with Aulton.

In mid-October, when Aulton was only 10 months old, his neurologist guessed that he had a disease called myotonic dystrophy. That was the first time I had heard those words. It’s funny, now. I look back on that day and remember thinking that I would surely forget what it was called. I had to write it down in my planner.

It would take seven weeks for us to get the results back confirming that Aulton did, in fact, have this rare form of muscular dystrophy. In the meantime, I researched the disease on the Internet, which was probably a bad idea. I did a lot of crying.

Myotonic dystrophy is a complex disease that has varied outcomes depending on the patient and the severity. I, for instance, have it, but didn’t even know until Aulton was diagnosed and I was tested. Now, I can see how some of the symptoms are present in my body. I had always attributed them to other causes. In adults, the disease causes muscles to cramp. Sometimes, I have a hard time releasing a really tight grip on things. I thought it was a joint problem. My leg muscles always tighten and ache when I’m sick. I never knew anyone who had the same problem. I have always had really bad premenstrual cramps, likely a result of the disease.

The disease is different for babies, causing severe hypotonia, or lack of muscle tone. It not only affects muscles in the extremities, but also the organs. In fact, it can affect cognition. Sixty percent of babies born with the disease also have some form of mental disability. Many babies also have difficulty breathing, sucking and swallowing. Miraculously, those problems only lasted a few days for Aulton. However, he continues to suffer from low muscle tone throughout his body, especially in his legs, shoulders and face. He can use these muscles, but has to be very motivated.

The prognosis for children with congenital myotonic dystrophy is varied. Some children progress into adulthood well with the assistance of physical therapy. Others, may progress well until early childhood then their muscles start to deteriorate. No one can really determine how the disease will present itself in the future for each patient.

I couldn’t seem to get past the feeling that all of the work I was doing with Aulton might be in vain if his muscles just decided to stop working one day.

My husband has had an optimistic attitude and has worked hard at trying to pass this onto me. I marveled that he could be so happy with just having a son and not dwell on the fact that Aulton would probably have physical therapy his entire life, might need a wheelchair by his teens or consider the endless doctor’s appointments we had to look forward to.

After the diagnosis, our pediatrician gave us referrals to some specialists. He had to add more lines to the form he used because of the number of doctors he wanted Aulton to see. By the first of June 2007, Aulton had been to more than 80 appointments with doctors and therapists since the beginning of the year. That’s an average of about three each week.

After one particularly grueling week, when Aulton had five appointments, some of them painful for him, I complained to my father. I told him I just couldn’t understand why my life was so full of challenges. My father trains employees on proper work behaviors and conduct. He gave me some advice that he has given co-workers. He told me that sometimes our trials aren’t trials at all, they are just our lives. I hated that advice and didn’t even consider it, because I didn’t want this to be my life.

Everyone pretended they understood. My sister-in-law once told me about a story she read in a religious magazine about a woman who had a special needs child. The author was expecting at the same time as many of her friends, so they were all experiencing similar things, until they had their babies. I don’t know what particular challenge this woman and her child faced, however, my sister-in-law said the author compared the pregnancy and birth to a journey. She had been prepared to go to “France” with everyone else, but ended up in “Spain” instead. I know my sister-in-law meant well, but the story didn’t resonate with me. I didn’t know why until I was discussing with my friend how worried she was that her child was going to choke on peas if she didn’t shell them. I thought about my biggest worry at the time, my son’s upcoming surgery. I was worried about how the doctors were going to have to take extra precautions because of the risk anesthesia poses on a patient with myotonic dystrophy. Then I understood why the story hadn’t affected me. Instead of landing in “Spain,” I felt like I had landed on “Mars.” A place so completely foreign to everyone, myself included.

As soon as I realized that my life of endless phone calls and doctor’s visits was not going to change, I had to decide whether I wanted to stay alone on Mars, or go to Spain. I knew it would be hard because my friends would stay in France, but at least I could go and visit. I looked around me and realized that I was bathing in self-loathing and bitterness. There are mothers who deal with children that have challenges far more difficult than the ones Aulton and I faced. I knew that these women must have felt the same things I was feeling. It was time for me to deal with this disease.

I realized that the people around me – my mother with her unconditional love, my husband with his optimism and my father with his wisdom and advice – were giving me the tools I needed to raise my son. And, I have the support of my friends, other family members and his therapists who love him and do everything they can to help him progress.

I started to look at Aulton in a different way, cherishing each accomplishment, no matter how small. I appreciated his differences, instead of resenting them. I tried to stay positive, even when it seems he is regressing or when I hear bad news. I read that children, even tiny babies, can sense frustration and stress and I don’t want my attitude to negatively affect him. And, I accepted my life as it is. I am blessed to have a child and I am blessed to have support. This doesn’t mean, by any stretch, that some days aren’t still extremely difficult, but I am doing my best.

Even though Aulton has started to smile more, he often shows his happiness in other ways. He was blessed with an amazing, loving personality and demonstrates his joy through the sweet noises he makes, clapping, cuddling, “dancing,” exhibiting his content nature and hundreds of other ways that only his parents know.

I used to have this crazy notion that a mother was doing a good job based on how much her baby smiled. My child has very little muscle tone in his face and a smile is a rare and important occurrence. Fortunately, I now know that there is more than one way to tell if a child is happy and that a mother’s worthiness is not based on how much her child smiles, but by how hard she tries.

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