Soooooo Not Going

No amount of cuteness on the part of these two is going to convince me to buy tickets.

Poor Troy - this is the second time the Patriots will play in the Superbowl in the city in which we live and this is the second time that Troy will not be in attendance! In 2004 (you remember nipplegate right?) he and a friend devised a plan to troll around Reliant Stadium thinking that surely someone would be forced to leave the game in the third quarter due to some emergency or illness. And this someone would just give them his tickets because, hey, someone should enjoy them. Hmmmm... it didn't quite work out.

The events coordinator at the company I work for forwarded this email she received from a ticket broker...

I especially love the part about the price coming down to $2,900. Sheesh... what was the price before? I guess it might be worth it if the potential wardrobe malfunction involved someone other than Tom Petty ;-)

On the Blogging Bandwagon Part II

It's true. I cook, I clean, I change diapers, and now I blog. Now that I got that off my chest I need a break. Sorry no pictures...haven't learned that one yet. (It's a marathon not a sprint.)
For the record Kajsa wrote the title and she should know better than to say I'm on anyones bandwagon...especially during this time of year...GO PATRIOTS.

Monosomy 1p36

Lately several friends have asked me whether or not Brady has an official diagnosis. I realized that while many of our friends know all about Brady’s issues and our family’s struggles over the past two and a half years, I haven’t done a very good job of informing people about what we learned from our 6+ months of genetic testing in 2006. I received a phone call in October 2006 during which our genetic counselor stated that Brady has “an interstitial deletion on the short arm of chromosome 1 and the breakpoints are 1p36.22-1p36.31.”

K. What?

Unfortunately our counselor was unable to provide any additional information and our geneticist had taken a leave of absence. Further complicating things was the fact that we had just moved out of state and had to start over with a new geneticist. We still don’t have a lot of answers but I will share what I have learned from my very official research utilizing our various doctors, Google and Wikipedia.

Each human cell has 2 sets of 23 chromosomes (one set from each parent). The chromosomes contain DNA and all sorts of information that make up each and every cell in the human body. While Brady is only missing a tiny piece of one of his chromosomes, this deletion affects every cell in his body and, subsequently, the way in which his body developed.

The technology used to diagnose deletions such as Brady’s has only existed for a few years so, as far as we know, there is no one else is missing the exact same material in the exact same place on chromosome #1. However, a syndrome called Monosomy 1p36 (or 1p36 deletion syndrome) involves a fair amount of the same information that Brady is missing. Picture a row of books containing exactly 20 books. Let’s say the people with Monosomy 1p36 are typically missing books 17 through 20 while Brady is missing books 16 through 19. This is why several geneticists we have contacted tell us that Brady does not have this syndrome and other geneticists tell us that he does. Confusing? I think so.

Regardless, Brady shares most of the same traits and issues as other children with 1p36 syndrome. Wikipedia has the most concise and easy to understand description of this syndrome, in my opinion. It was written by the father of a little girl with the syndrome. We were lucky enough to meet Nate and his family over Christmas as they live in our home state of Utah. Nate and his wife Melanie have taken it upon themselves to blog about their experiences with 1p36 syndrome. This blog (along with a couple of other websites created by other 1p36 families) has helped me understand many of Brady’s issues and has provided me with valuable advice in regards to different treatments. These parents know more than any doctor I have encountered and I don't know what I would have done without all of the information they have put on the internet. Nate & Melanie’s daughter is a year and a half older than Brady and I cannot begin to describe how uplifting it is to read about her progress and witness all of her many accomplishments.

So to keep things simple we are now telling people that Brady has 1p36 syndrome. For more information on this syndrome, you can read the Wikipedia entry here. My hope in writing this post is that someone like me, scared and confused after receiving a call from their doctor, may find this blog when they type “1p36” into Google. If so, please feel free to email me and I will try to answer your questions and offer you the same support that so many people in our new 1p36 family have offered me.

ALL IS WELL

I am happy to report that Brady is recovering quickly and will officially resume his therapy schedule today. He had almost an entire month without therapy appointments due to the holidays and the fact that he was sick all of last week. His therapists were so disappointed that they didn't get to see him as planned. We are very fortunate to have so many talented, hard-working therapists who truly care about Brady. They have all played a big part in getting him to where he is today.

This is my mom's favorite picture of Brady which she has framed and reportedly showed to all of her friends. She says "he looks like he is flying because he is so excited to be able to walk."

Brady was too weak to walk or crawl while he is sick so I am seeing his joy all over again at cruising around the house. You go, Buddy!

RSV SUX

We had a fabulous Christmas which included a two week trip to Salt Lake City and my first two week vacation in... um... ever? Our digital camera is in the shop for six weeks (unbelievable) so we dragged the ol' Canon Rebel film camera with us and then ruined all of our film in airport security. No bloggie pictures for you, Grandma. Sorry. I will post more about our holiday fun later because all I can think about this week is a sick toddler.

I have a huge issue with blog procrastination and this camera issue is not helping. I have to wait until I have taken 24 pictures, drop off film and pick up a disc in order to upload any current pictures. Fortunately (or should I say UNfortunately), I do have a picture from a few months ago that can stand in to represent what has been going on at our house the last few days.

Our little guy is so sick! The doctor said his ears look fine and it must be RSV so there is nothing we can do but alternate Tylenol and Motrin for his fever. Brady's to-do list over the last 48 hours looks something like this:

1. Sleep for one hour
2. Scream for ten minutes or until Mom/Dad has rocked me sufficiently
3. If feeling nice, take three sips of juice
4. If medicine is administered, scream for an additional ten minute interval
5. Then, if Mom is rocking me, pass out. If Dad is rocking me, pass out unless I see, hear or think about Mom in which case, commence additional screaming interval
6. Officially pass out as long as someone is sleeping under or next to me and the humidifier is blowing directly in my face
7. Repeat

Troy has been such a trooper considering he doesn't get to escape to the office for 8 to 10 hours each day. He has been insisting that I sleep most of the night while he takes care of Brady since he is co-napping most of the day. We can't figure out what exactly is going on with the Bubbies other than the fact that he is severely congested and doesn't yet know how to blow his nose. He absolutely panics every time he wakes and but will calm down eventually since the screaming seems to dislodge a shocking quantity of mucous.

This is not a very interesting post but when the Bubbies ain't happy, nobody's happy! I am really wondering how how people pull this off with more than one child. Any suggestions from my numerous (two) readers?

Quick Update

Wow, time flies! The good thing about posting so infrequently is that I get to report on several milestones that Brady has achieved in the past few months. At my last post Brady was 20 months old and just learning to sit up on his own. A few months later and check this out...

Yes, this is Brady standing on his own during a physical therapy session. He started crawling on his second birthday and is now pulling himself up on furniture and cruising around as long as he has something to hold on to. We don't typically dress Brady in half of a monkey suit but this picture was taken on Halloween and it was just too hot here in Phoenix to wear the whole costume.

Brady seems to have had a huge burst in development after what seemed like an extremely long time with nothing new happening. Sometimes it is hard to see the progress when you spend so much time with your child each day. I am not a patient person and this is something Brady is helping me learn every single day. I remember when he had just turned one and was still barely holding his head up and trying to roll over. We were waiting for a diagnosis and I had this recurring fantasy that I would go in his room to pick him up from a nap and I would find him standing in his crib holding onto the rails. I even moved the mattress down so he wouldn't fall out of the crib when this big miracle happened. I realized the other day that Brady's miracle did happen, just not on my own time frame. I am still trying to get used to him just "appearing" in different places of the house. I love seeing him assert himself and just crawl over to play with whatever he decides he wants. Lately when the house gets too quiet I almost always find him doing this...

Brady is always sneaking off to his room and pulling every book off the shelf. He truly loves books and while he prefers that Troy and I read to him he will entertain himself like this for at least twenty minutes a few times each day. Brady is still nonverbal and struggles to learn things every day of his life. We noticed, though, that he alway "reads" his books with the right side up. He knows what the words and pictures are supposed to look like! This is good enough for me, for now. I'm still trying to work on this thing called patience.

Long Time No Blog

It has been well over two months since the last time I updated the blog and I am well aware that the excuse of the holidays has more than expired. Here is a quick run down on what we have been doing since my last post.

We spent Christmas in Utah and tried to catch up with as many friends as possible in a short amount of time. I was able to visit my old office and catch lunch with my friend Mary. I was also able to see Mindy, Natalie and Michelle. It’s such a challenge to keep up with each other after everyone moves away and I am so glad that our friends have made the time and effort to keep in touch!

We were back in Phoenix for about a week and then Troy and Brady went back to Utah for Grandma Crawford’s (Troy’s grandma) funeral. Troy was also able to participate in a colon cancer research study at the University of Utah with three of his siblings. It’s funny that the one time they were able to spend time together without the kids involved colonoscopy preparation… yikes! It was a positive experience overall especially because one of them had a polyp removed that turned out to be pre-cancerous. All is well and for Troy, the peace of mind was well worth the discomfort.

I stayed in Phoenix during the boys’ January visit home to work and attend real estate appraisal classes. Needless to say I couldn’t wait for the boys to get home at the end of January. I luckily squeezed in a weekend visit home so the most I went without seeing them was ten days. This is the longest I have been away from Brady and I was, of course, a complete mess. I’m pretty sure Brady missed me too because when I picked him up to hold him at the airport he wouldn’t let me look anywhere but at his face. He would literally grab my cheeks and turn them back towards him so I would be paying direct attention to him at all times. I am so relieved this round of classes is over because they were adding an extra four hours to my existing work days.
As for February… Troy and Brady were busy with therapy and various Dr.’s appointments. I have a weird obsession with counting the total number of appointments they have each month and February totaled 22! Brady is currently seeing physical, occupational, speech, and developmental therapists every week. Other appointments in February included his 18 month checkup (75th percentile and healthy!) and evaluations by hearing and vision specialists. So far Brady has passed these exams with flying colors.

A few weekends ago Brady and I attended a sign language class held by a friend of my sister’s in Fountain Hills. I could post an entire blog on this subject so why on earth do I forget to bring my camera to these things? Brady is still not using consonants so sign language is going to be his only means of communication for the foreseeable future. He has learned two signs so far (waving for “hi” and “bye” and “more”) and just got his “Signing Time” videos in the mail from Grandma so hopefully there will be more signs to follow.

Merry Fake Christmas

Merry Fake Christmas to us! We are heading to Utah later this week and realized that we would never be able to fit our gifts into our luggage. So last Saturday morning we celebrated our own little fake Christmas and opened our presents early. Brady was in rare form as the Grinch. He enjoyed tugging on bits of wrapping paper for exactly eighteen seconds. Then he insisted on sitting in his high chair, watching "Jay Jay the Jet Plane" and eating snacks for the remainder of our holiday morning. Therefore I will pretend that the picture above was actually taken during the festivities and not several weeks ago when Brady was feeling more jolly.

This was the one and only present Brady assisted in unwrapping. He did manage one smile for the camera. Actually, he was "yelling" at me but every time the flash goes off he giggles for a split second. Next year we will open gifts later in the day because the poor guy is just not a morning person. Lately his ideal morning consists of snuggling with Mom or Dad on the couch, blanket in his left fist and his right thumb crammed into his mouth. He now points and grunts at the TV or will stare down the remote until we turn on his cartoons.

Brady was a bit confused because Mom and Dad were busy unwrapping presents of their own so the Grinch got to supervise from his perch while eating crackers in the buff. Argh, don't you hate it when Christmas interrupts your morning routine?
Well, we had a great pre-Christmas and we can't wait until round two which might actually involve real snow. We are counting down the days until we see our families and friends because it just wouldn't feel like the holidays without them.


Merry Christmas!

Happy Holidays

Every year we plan to be on time and organized with all our Christmas activities. Then life happens and all of our early shopping and decorating plans fly out the window. This year, for the first time in our little family's history, we did it! We decorated the tree, ordered our cards, and had 90% of our Christmas shopping done by Thanksgiving weekend. This truly is a holiday miracle. Okay, "miracle" might be taking it a bit too far. It probably has a lot more to do with the fact that we are not juggling two careers and a new baby this year. Troy has been staying at home with Brady and always has things organized and ready to go.

I guess the real miracle is that we went to a craft store (gasp) and bought ribbon to put on the tree. This was one of my first trips to a craft store in all of my almost thirty years, which is truly shocking considering my Utah heritage. We wrapped a ribbon around our pitiful, $16 fake tree and I think it actually turned out okay. I even constructed the bow at the top of the tree from said ribbon. Not too shabby.

Figuring Things Out

Hopefully we have figured out how to actually post to the blog we created. We are starting to feel settled in Phoenix and are trying to get in the holiday spirit. It just doesn't feel like Thanksgiving is around the corner when it is 85 degrees and sunny every day. Today was the first day the air conditioner didn't kick on and it remains to be seen if we will ever use the furnace. Wait, do we have a furnace?
We recently emerged from the dark ages and bought a digital camera. Here are some pictures of the three of us at the hotel pool while on our house hunting trip to Phoenix in September.

On the Blogging Bandwagon

Welcome to the Farnsworth family blog. We thought this would be a great way to keep in touch with friends and family after moving out of Utah once again. We have set up shop in Phoenix and are enjoying the weather (for now, that is) and desert scenery.