Farnsworth Family

Quarterly Update?

2010-11-03T18:28:00.042-07:00

You know it's been a long blogging break when you try to leave a comment on someone's blog and have to give up after 9 incorrect password notices. There has been a lot of stuff going on in our world. Where do I start?

After 4 years in Phoenix we finally bought a home. We were in the process of buying a 2-story home and got cold feet as it was being constructed. It had a huge loft with a low railing and honestly, we just don't know if/when Brady will understand the danger of heights or figure out how to go down stairs safely. Instead we moved into this one story. With a pool. Danger lurks everywhere, people.

Brady started kindergarten and it hasn't been an easy transition. We have questioned our decision about which type of classroom he should attend and still, there is just no really great fit for him. It's incredibly frustrating and this issue has been overwhelming us since the first day of school. We will again visit all possible classrooms in the district and make a decision. Other parents be forewarned... the district just may change every single teacher/classroom/program two weeks before school starts and therefore those 7 classroom visits/possibilities you agonized over last spring will be for naught. We did win our fight for a one-on-one aide for Brady which is a positive. Observing him in his current classroom (8 kids/3 adults), we now realize there is no possible way he would be kept safe and have his unique communication needs met without an aide. Fight, fight, fight for what you need and deserve. Troy can give you some pointers. He made some ladies cry in our IEP meeting because he presented such an emotional case for Brady. That, and a log of all of Brady's classroom falls and injuries over the past two years didn't hurt... aside from our kid coming home from school with a black eye more than once. Oh, the irony.

Brady has had more seizures, including two back-to-back totaling almost 20 minutes and resulting in his first ambulance ride. The episodes seem to be evolving into a different type of seizure which is less intense. One time he was conscious throughout and trying to eat french fries. Thankfully the seizures still occur infrequently, although it has been tough emotionally to come to terms with the fact he is not likely to outgrow his epilepsy. We may be adding an additional medication soon as he is on the maximum dosage of Keppra. I now carry a diaper bag on me at all times with a blanket, rescue medication and if anyone can find me an attractive women's watch with a stop watch let me know!

And for better news... Brady has had a recent burst of communication. No talking. I have fully accepted that verbal speech will not likely be a possibility for Brady. I will never limit him or lose faith in his abilities and determination. And I still wake up from dreams where he talks to me. It's never anything of the melodramatic "I love you, Mom" variety but more random conversations wherein he asks me to "pass the syrup" or something. And in my dream it's not really a big deal. And some things happened in the last few days which made me realize it just doesn't matter if he speaks verbally.

We were playing catch (yes, he can catch a ball - amazing, right?) the other day and when I told him I was all done he signed "more" + "ball"+"mom." He has never strung signs together as a sentence. He loves catch so much he would stop at nothing to tell me he wanted more. I am learning it is all a matter of motivation for him. He also signs "more" + "water" when I turn the water off in his bath. With his talker he is telling me what he wants for all meals and I have been known to drop everything and run to the gas station on the corner to buy Pop-Tarts or donuts to positively reinforce his use of the talker. Healthy? No. Effective? Absolutely. Last weekend he used his talker TWICE to tell me he needed to go to the bathroom. It was the BEST.DAY.EVER.

Through all of the recent changes in his life (moving, new summer program, new school, massive medication increase) Brady starts every day with a big smile on his face and a hug for Mom. He brings so much joy to my life it doesn't seem fair. His smile makes every heartache over his classroom situation or seizures disappear every morning.

Oh, and he loves watching football now. Will sign "touchdown" and announce it with his talker. Dad is understandably ecstatic.

1p36 Deletion Support & Awareness - Please Vote Today!

2010-08-06T13:35:00.010-07:00

It's been a long time. I have many new things to add to the blog but would first like to draw attention to a cause which is near and dear to my heart. I have posted before about Brady's diagnosis of 1p36 deletion. I know the name can be confusing and intimidating. And most medical professionals have never heard of this syndrome. However, it is the most common chromosome deletion and is estimated to occur in 1 on in every 5,000 to 10,000 births. Unfortunately, many individuals remain undiagnosed as newer technology (microarray versus traditional FISH testing) is often required for a correct diagnosis.

A group of parents whose children are affected by 1p36 Deletion have devoted their time and energy to furthering awareness and support for other families affected by this syndrome. These parents have created a non-profit organization, fundraised and hosted several annual conference where families can meet face-to-face with other individuals affected by 1p36 Deletion.

I am asking for your support to further these efforts by voting for 1p36 DSA at the Pepsi Refresh Project site. This cause is in the running for a $50,000 grant which would allow the 1p36 nonprofit group to create brochures and other materials to further awareness and more accurate diagnoses of 1p36 deletion in the medical community.

You can vote for 1p36 DSA every day during the month of August by texting "101439" to Pepsi (73774)... AND...

Sign up to vote at http://www.refresheverything.com/

Search for 1p36 to find this cause and click "Vote for This Idea"

You can vote for 1p36 DSA every day (by both text and on the Pepsi Refresh website) during the month of August.

Please show your support by voting and passing along this information. You couldn't say no to this face, could you?

I know it's an old picture but it is one of my favorites. It was also taken before we received Brady's diagnosis when we felt so very lost, alone and confused by Brady's global developmental delays and other medical issues. Please vote for 1p36 DSA so other families can receive the information and support we have been so lucky to have found.

More information can be found at 1p36 DSA.

Potty Talk

2010-05-13T17:50:00.006-07:00

The Flip Family Potty Seat: $44.95

The Potty Stool: $99.00 7 Stickers in 10 Days... Priceless!

Okay, so maybe he missed one important step (pants off)! But Brady can climb up on the potty all by himself without us having to utilize an expensive and bulky special needs toilet. We have been looking for potty training options which would accommodate a child who is older/larger than the average potty training-aged child and The Potty Seat is perfect. The supportive handles slide right off if you want adults to be able to use your guest bathroom. The stool can also be used by little ones to access the sink. Most importantly, it is helping bring Brady one step closer to being more independent. We have been working on this goal for about a year now and, although he doesn't communicate when he needs to go, we can usually sense the need for his #2 each day. The best part is, for a child with very low muscle tone in his trunk he is now able to eliminate more easily. We still use Miralax almost daily but the constipation issue has definitely eased with the use of the toilet for some reason.

That's enough poop talk - I just had to share this product because we have been searching for a really long time and love it.

The Middle

2010-03-30T14:20:00.044-07:00

For the past several months Brady has undergone extensive evaluations carried out by the various educators in his classroom and at the district level in an effort to place him in the most appropriate kindergarten classroom later this year. The result was numerous pages of information documenting his abilities in all areas of development. The verdict? I couldn't tell you. Please see below.

There was an age-equivalent score of 11 months somewhere in the report. I forget the category of development to which this score pertained because I can not and will not dwell on that number.

Brady's expressive language skills were placed in the 4th percentile of the disabled population. I doubt he can even be placed on the chart for the general population. His almost complete lack of speech has disqualified him from every single speech therapy camp I tried to enroll him in for the summer. We are willing to pay thousands of dollars for these camps with adult to child ratios ranging from 3:4 to 2:10. They wouldn't take him. They said he is too disabled for those caregiver ratios. They said he has to be able to speak to go to speech therapy camp. Irony is a cruel bitch.

With respect to most other areas of development, Brady scored somewhere in the middle. I guess I would call it "pretty delayed."

I'm not trying to paint a bleak picture or evoke sympathy. These are the specifics of Brady's development. And we feel they are accurate for the most part. Troy and I filled out a questionnaire which yielded almost identical results.

And now things get confusing. Brady scored within the range of average for his age group in pre-academic skills. He knows his letters, numbers, shapes and colors. This qualifies him for a higher-functioning special education kindergarten classroom. We visited these classrooms and all of the children can talk. All of the children are toilet-trained. All of the children can navigate stairs and other hazards to which Brady pays little attention. None of the children wear helmets, as Brady does, so he doesn't injure his head or come home from school with any more black eyes. (This is starting to sound highly similar to a fretful post about Brady staring pre-school!)

He can learn. He is an exceptional memorizer of things, labels, pictures, landmarks. He can navigate my cell phone and his talker like nobody's business. He does silly things, purposefully, because he knows they are funny. He has found a way to tease me, to poke fun at things I do without using words. He is smart and resourceful. He is in there, even if he can't always communicate it. Other people see it too. I have been accused of exaggerating his condition because "he doesn't seem disabled." I have been excluded from discussions by other parents because he's not as disabled as their child. Yet it is becoming increasingly difficult for Brady to relate to his typically-developing peers, even those several years younger than him.

I guess all of this lands him somewhere in the middle. So we continue to carve out our support network, our family, friends and caregivers who get it, or compassionately try to understand. We continue to consult with other parents of the differently-abled and have been shown tremendous resources and support. We continue to hope for the best for Brady and are consistently reminded to be grateful for the middle.

Since We've Been Gone...

2010-03-17T20:38:00.028-07:00

Someone rides his new friend Applejack every Saturday morning...

Someone learned to ride his bike... with a bit of help...

Someone now insists on feeding himself... doesn't spill a crumb of In N Out...

The healthy stuff is a different story...

Some new things have proven more difficult than we bargained for...

Others... not so much...

Someone's seizures have continued... but are thankfully rather infrequent...

The Keppra-Rage has reared its ugly head with recent dosage increases... but as the weeks pass someone continues to return to his sweet self every time...

Someone is busy getting ready for Kindergarten (?!) this fall...

And later this summer... someone's parents will have finally committed to living in Phoenix...

And oh, how we have all missed our little blogging world!

Two Steps Forward...

2009-06-24T09:25:00.004-07:00

and one step back. Brady and I made a quick trip to Utah over the weekend for my sister's bridal shower and my brother's mission homecoming. It was a wonderful visit full of quality time with both sides of the family. Brady loved playing with his cousins, but for some unknown reason had a seizure during the trip. He had another seizure in the bucket swing at school yesterday morning so there will be no more playing outside until the weather cools down.

I took the seizure counter down for now because I just don't have it in me to watch those numbers climb then fall back to zero again. Brady's Keppra dosage was increased and we also switched back to the brand name drug as we recently started using a generic version thanks to pressure from our favorite insurance company. We are hoping that the drug switch will fix the problem... fingers crossed.

I have been MIA from the blogging world for a bit as I made a goal to stop blogging at work. Today I'm granting myself an exception because I'm grumpy! I hope you all are well and we will be checking in soon!

What A Difference A Year Makes

2009-06-10T09:37:00.008-07:00

Yesterday Brady reached an incredible milestone that we often wondered if he would ever reach. In the late afternoon Brady hit the year mark for being seizure free. Words cannot describe what a difference this has made in all of our lives. I know we are not out of the woods by any stretch of the imagination, but a break from all of this has been much appreciated. Seizures are very unpredictable and can show their ugly face at any time but for now we are going to enjoy the benefits of living life seizure free. (I wish Brady could write this post himself because I'm sure he would be able to describe in much better detail how much this has changed his life. Those stupid seizures used to wipe him out and I can't imagine the headaches he must have dealt with on a constant basis.) It seems like yesterday that I was feeling the all to familiar range of emotions that would overtake me each and every time I watched him have to endure those 3-4 minute seizures that seemed like an eternity. We are so grateful for family, friends, modern medicine (namely Keppra), thoughts, and prayers that we know have all contributed to to helping Brady stay seizure free for this time period. We celebrated the event with cupcakes and numerous party favors from the movie "Cars"(also a new milestone...interest in a full length movie!!).
It is obvious that Kajsa usually does the posts and has fun pictures and comments to go along with them but she has the camera at work and I am not as creative as she is but I wanted to add one final thing to this post. Yesterday when I was thinking about all of this I went back and found the lyrics to a song that I had written (posted below) when I was having a hard time dealing with the seizures and some of the other challenges of raising a child with special needs. Raising a child with special needs has changed my life in so many ways. It has opened up a whole new world of emotions, questions and answers, setbacks and milestones, but most of all it has given me a life and a world filled with love. An unconditional love that goes both ways and is much deeper than anything I ever thought possible.
We love you Brady.
Congratulations on yet another milestone!

Here are the lyrics to the song:

"No matter the reason"

I have a hard time believing
That things happen for reasons
I just don't agree with what you say
Am I missing something
I must be missing something
There are things about this I would change

I'd change the pain I see within your eyes
I'd leave a peaceful smile
I'd give you strength to sit up
I'd give you strength to eat
I'd stop the charge before it starts
I watch you shake it breaks my heart
I'd calm your precious body
So you can sleep the night away

I have a hard time believing
That things happen for reasons
It just doesn't seem to all make sense
Some say that we're chosen
Why is anyone chosen
I see the kids...their moms...I feel their pain

I'd change the pain I see within your eyes
I'd leave a peaceful smile
I'd stop the tears from falling
When you feel you are to blame
I know how much you love your son
I love him too with life undone
We both could use some peace of mind
So we can sleep the night away

We try and try with doctors, tests, and therapies
We run around and second guess ourselves when we don't see...we don't see

But you see
Now I see
You be you
I'll be me
It's okay
We're alright
And I know
You'll do the best you can
In life
I'm glad I was chosen to be here for you

You want to be a doctor
I won't take that away
You may not frame the paper
But you'll heal me just the same
You want to be a teacher
Then I want that just the same
You may not find the words to say
But you'll teach me everyday
With your love...Your love
With your love...Your love

No matter the reason
You've given my life new meaning
I'm glad I've got you here with me

Device Decisions

2009-04-16T10:07:00.005-07:00

We had a very productive and overwhelming meeting with the device people on Tuesday afternoon. Present at the meeting were the following:

Brady's Teacher
2 Classroom aids
School Occupational Therapist
School Speech Therapist
Home Speech Therapist
District Speech Therapist (specializing in devices)
Southwest Human Development Speech Therapist (the state's contractor for device evaluations)
Southwest Human Development Occupational Therapist

Do you think we have enough support? They brought several different devices to demo and they wanted to observe Brady using the different models to determine which was most appropriate for his needs and abilities. Brady was fairly cooperative and wow'd them with his love of buttons. At one point, one of the reps was covering a few buttons at the top of the device and Brady was trying to shove her hands out of the way. He wanted sole control! The great thing is that we know he will want to use one. The challenging thing will be getting him to use the device for communication and not as a toy.

It's not yet official but Brady will likely be approved for the Prentke Romich Vantage Lite.

This is a huge, huge deal! It is known as one of the most cutting edge and complex devices on the market. Brady will be able to use the same device all the way through high school as it facilitates reading and writing. For now we can program it to be more simple. The reason approval for this device is so huge is that, in most states or school districts, it's extremely difficult to get approval for something so complex and expensive. We also have to have support at the school level because somebody has to train everyone at school how to use it. Luckily our district supports this particular device and Brady's home speech therapist has experience with it as well. Did I mention Brady's new device will cost more than my car is worth? We are very fortunate that we don't have to fund this ourselves as many other parents do in order to get the best device for their child.

It's going to be a lot of work learning the software and how to program and back up everything on a regular basis. Even more work will be encouraging Brady to use the device in an appropriate manner. I'm going to find ways to cut back at work because I want to put everything we've got into this. I want to give this boy every opportunity to finally have a voice.

Self-Taught

2009-04-13T15:51:00.013-07:00

No thanks to his parents, SOMEONE has learned some of his ABC's. I give full credit to the VTECH Write & Learn Letter Pad...

and the Leapfrog Fridge Words Magnetic Word Builder.
The first we keep in the car and Brady pushes the buttons over and over... and over. Just for fun, so we thought. The second is on our fridge and Brady prefers to hit the middle button juuust right so it malfunctions and makes a horrible static sound.

A few nights back Troy and I were discussing how Brady obsessively pushes the same buttons over and over. His stimming has escalated lately and we figured the button pushing was no exception. On a whim I asked Brady to touch certain letters. He did so with 90% accuracy. We have tested him a few more times and, while he doesn't know all of the letters, there are several that he always gets right. I didn't know whether to cry with joy or with sorrow for the extent by which I may have underestimated him.

It's incredibly difficult to understand this boy's capabilities because he is almost 4 years old yet he doesn't speak. Not a word. He used to say "yeah" but he lost his one and only word. I don't know where it went or how to find it. He can say "sssss" when (and only when) he is on the swing. Occasionally he will babble and we may hear a "g" sound or "v" sound. He has lost (or refuses to use) most of his sign language. It's hard to tell if he is willing and unable or able and unwilling to improve his expressive communication.

We have a hugely important meeting tomorrow at the school. Brady's teacher, aids, speech therapists (he has more than one) and a speech device representative will all be there. I am praying that an augmentative communication device will be the answer. I have seen some demos online and they use the same PECS pictures Brady has learned to use and a computer will generate a voice as he chooses a picture. Somehow technology has allowed for sweet-sounding children's voices and not strange, robotic computer sounds. I hope, hope, hope this is the answer for Brady. I would love to hear what's on his mind.

Thankful

2009-04-05T15:16:00.009-07:00

300

Brady has been seizure free for 300 days! It was exactly one year ago that he was released from the Epilepsy Monitoring Unit and what a difference a year makes. Brady has had only one seizure since starting the new medication and thankfully he gulps down his Keppra twice a day with no complaints.

It's hard to explain the shift in our quality of life over the past year. Brady used to have what we called his good days about once a week. He was happy and content the whole day and we would take him to the park, the store or a restaurant without much worry. The rest of the time he would seem to be in some sort of distress. He was irritable and tired and seemed sensitive to loud noises. We babied him on those days and prayed he wouldn't seize. I think he must have had horrible headaches a lot of the time.

Today he pops out of bed every morning with a huge grin and goes about the business of being a 3-year old boy. He is obsessed with vehicles - the bigger or louder the better. He loves wrestling, TV and stroller rides to the park, In N Out, or Barnes & Noble. He loves going to school and playing with Jessica in the afternoons. He adores other kids and doggies he sees in the neighborhood.

(giving Mom directions to the park)

Brady is thriving physically and is a pro at walking now. There is less and less carrying and more hand holding. So much has happened that I thought might never be possible. With all of the strides Brady has made there are certainly new issues that have popped up. We now need to turn our attention to his behavior and the fact that he has regressed over the past year with respect to speech and sign language. But I am thankful that we are able to focus on other areas proactively rather than just surviving each day.

Look at this kid. Not a care in the world - just as it should be.

Holidays 2008

2009-01-14T17:33:00.023-07:00

Better late than never. We had a wonderful, 10-day trip to Utah for Christmas holiday. I'm still not in the habit of taking advantage of picture-worthy moments and events, but here are a few that I managed to snap... or, ahem, stole from someone else's blog.

It's tradition to open presents at my parents' house on Christmas Eve. Brady loves the interactive Elmo he got from Grandma.

Connor is the only other grandchild on my side of the family. He and Brady are still very close, despite the distance between their respective houses. They spent many Christmas break afternoons playing side by side. I miss this kid so much! He still calls me Kajsee.

My dad and younger sister Alexis (displaying some VERY warm socks guaranteed to keep her toasty even in Logan). Okay, I thought my camera-dodging skills were pretty sharp. Look how my mom has perfected "the lean back" in order to avoid being in the shot.

Books, books and more books from Mom & Dad. All books had wheels attached to them, of course. We open the big presents at home because 7 suitcases full of stuff do not go well at the airport. Also, Brady hates gifts, the unwrapping of gifts, and most things Christmas.

The immediate reading of aforementioned books.

We crashed Darin & Janet's Christmas morning extravaganza. Since Brady hates unwrapping gifts and doesn't yet get the whole Christmas thing, each year we have picked a place to show up early on Christmas morning and watch the fun.

We spent the rest of Christmas day at Crystal's house with Troy's family. Brady loved watching the neighbors plow snow through the front window. It snowed so much that day we all stayed overnight rather than braving the roads.

Mom & Brady sacked out during our impromptu sleepover.

A newly discovered love of Ms. Pacman.

*I have to make note of the fact that I did not take ONE group family picture and very few of family members. What the? I downloaded these and realized I have a habit of only snapping away at Brady. Jeez. I will do better next trip.

Later, we had a fun visit with the Culleys, during which not a single photo was taken. Just imagine Brady raiding Luke's pile of new Christmas toys and Luke graciously sharing, as always. We love catching up with this family! The Twilight fan extraordinaire gave me a copy of the first book. Ahhhh.. I LOVE having a good book to read while on vacation when there's no guilt about skipping out on responsibilities around the house. I had been feeling out of the loop with all things Twilight and now I am hooked. It was very suspenseful and left me really wanting to see the movie. Thanks, Jenn!

Below you will see me experiencing my dream afternoon. Reading a good book while snuggling Brady through an entire nap. I would do this every day if possible.

We also had a great night out with the Rhodes. Jane, please forgive me for blatantly stealing this photo from your blog. My photos didn't work!

We had a tastey barbecue dinner followed by a trip to the greatest place on earth... a shop FULL OF RICE PUDDING! All (okay, most) of my dreams have officially come true. Then we went to the movies and saw 7 Pounds. Troy and I usually make it to 2 0r 3 movies per year and this one did not dissapoint. We love visiting the Rhodes and it's nice to see blogging friends in person once in awhile. Speaking of which, we all stopped by the Staker's house. I think our wedding was the last time we saw them in person? I hope I'm wrong - that means it's been at least 5 years. I finally met their four beautiful boys, including baby Bronson. It was wonderful to to see them all. Thanks for letting us stop by!

Our Utah trips are always too short. I wish I took more pictures and I wish we had more time to visit with everybody. As always, thanks to Mindy & Scott Taylor for letting us show up unannounced. Every time I see Mindy I kick myself for not showing up at her house more often! I love that we can pick right up where we left off... even if it has been a year. She has finally given in to Facebook... it's only a matter of time until I can see her on blogger!

Okay, I will end this enormous post with my favorite picture of the trip. This is Brady getting bundled up for the first time, slightly baffled by the concept of wearing a hat. He is trying to sign "Brady wants" as in "Brady wants this hat off." Instead, he ended up signing "whaaaaaaat?"

For You, Grandma

2008-12-18T21:06:00.009-07:00

Christmas Card Rejects...

It was so hard to choose...

Naughty or Nice?

2008-12-01T17:42:00.012-07:00

We just decorated the house for Christmas and, for the first time, someone noticed there were shiny ornaments to be yanked from the tree. Brady has developed in leaps and bounds this past year. In the same year that he became both mobile and aware enough to harass the tree, he was also smart enough to wait until both of us left the room to have at it. He doesn't realize I have evidence...

Poor Frosty is still hanging by his ski boots because I get a kick out of seeing him like that every time I pass by the tree. Not only is Brady skilled enough to remove the ornaments, he's also smart and naughty enough to attempt hanging them back up before he gets in trouble. His fine motor skills won't yet allow him to hang them properly, instead he slams them into the branches hoping the ornament will stick. Thus, the Frosty yard sale.

Another new "no-no" at our house is tearing ALL of the pictures out of the PECS book over and over each day. I am so sick of hearing myself repeat the same lecture about how the "schedule book is not a toy - it's a very important book that tells Mom & Dad what Brady needs."

Do you see him looking at the book and scheming? I do. But he will wait until I leave the room to tear it apart! When I come back and give him "the look" he grabs all of the cards and tries to shove them all back into the book at once, like if he's fast enough his mom surely won't notice.

This naughty boy is getting so smart. Thankfully, there are some things that haven't changed...

...gotta love those crinkly eyes.

Just Because

2008-11-17T11:42:00.009-07:00

Some pictures. Just because...

...this boy can't be bothered to hold up his own head while watching cartoons

...because I saw a dog wearing sunglasses the other day (only in Phoenix)

...because the other night my wildest dreams came true :-)

Green Light

2008-11-04T11:53:00.009-07:00

I'm still not back in to the blogging swing of things. To say I have been a bit preoccupied is an understatement. Three weeks ago Troy and I met with a genetic counselor who looked over the tests that we took after we received Brady's diagnosis. As we suspected, although we were told at the time that everything looked fine and we were given the green light to have more children, there was an additional test which needed to take place to determine if either of our chromosomes carries a balanced translocation.

I am horrible at the waiting game. Waiting around while those vials of blood are sitting in some scientist's office is almost more than I can bear. In the mean time, life-altering decisions wait in the balance. I go about my usual day-to-day business but the thought is ALWAYS in the back of my mind. Luckily, we only had to wait a couple of weeks this time around. Brady's series of tests in 2006 each took 6 to 8 weeks for a total of almost six months in limbo. And if you did not have the pleasure of seeing me during that time, trust me when I tell you I did not handle those 6 months gracefully.

This morning I got the call. The real, official GREEN LIGHT. Everything looked fine! Fine! Why can't I figure out how to make big, colorful letters on blogger like everyone else?

So I thought I would share the good news... even though we have no near-term plans to give Brady a sibling. My anxiety over the tests is slightly ridiculous considering we have procrastinated this process for almost two years. I don't think I was emotionally ready until now to hear the results if the outcome was not the outcome I wanted to hear.

And I need some more time to ready myself for the possibility of more children. When we met with the counselor regarding potential possibilities and tests we quickly learned that the only thing the testing options provide is knowledge and the choice of terminating a pregnancy. This is not an option for us. Religious beliefs aside, it would be as if I were telling Brady that he shouldn't be here. And nothing could be further from the truth.

So if there is a next time, a next pregnancy, we will proceed no matter what.

Last summer a good friend of mine asked me if we would have more kids and I explained to her that we hadn't completed the tests to determine if Brady's syndrome would occur in future children. She looked at me innocently and asked, "You don't want another Brady?" Her question was so naive and full of love that I felt a bit guilty and responded defensively. I sputtered on about all the potential issues. I might not have enough time to devote to TWO children's therapy appointments, hospital stays, etc. And when Troy and I get too old to care for Brady, I would go through DOUBLE the agony of figuring out who would take care of him. And blah, blah, blah. Later I played out the conversation in my mind and realized I needed to have an attitude more similar to my friend's. While these issues are legimitate, they are life. Some things are difficult to bear, but with a little patience and an open heart, you start to see the person. Not the person with the disability. Not the boy with the seizures. Just the beautiful boy. Another Brady would be just fine with me. I have officially reached that place. I just want more time to enjoy him all to myself.

Tony Hawk Helmet

2008-10-10T09:55:00.012-07:00

Fall is in the air and we are finally emerging from our summer hibernation. Since we live in Bizarro world we will be spending as much time outside as possible this winter. Brady has difficulty regulating his body temperature and this new addition to his wardrobe makes things even hotter…Brady’s physical therapist fitted him months ago for a specific helmet which had to be ordered through our insurance company. Thanks to a heap of red tape and bureaucracy, the helmet has never arrived, despite the fact that Troy ordered it in July. After Brady got, literally, a golf ball-sized lump on his head from a fall at school (one of many), I got very upset and angry with myself for not finding another helmet. Since it’s much easier to be angry at someone else, I blamed Troy. Not my finest moment. He rushed out and bought the Tony Hawk helmet.

A few nights later, I found him cutting up a tennis headband and hand-stitching it together. Troy will kill me for sharing this, but seriously... he hand-sewed this padding over the helmet’s clasp so it wouldn’t pinch or irritate Brady’s chin. I don’t know very many guys who would do something like this. So I am an even bigger turd than I previously thought for pointing my anger towards him. Check out his work...

Brady doesn't love wearing the helmet, but it’s allowing him so much more independence to cruise around without us hovering there to catch him.

He is walking really well these days. He cruises so fast and has a newfound confidence that, ironically, is making him more susceptible to falls. He does NOT like to hold hands and insists on doing everything his way. In fact, I think his little strut is turning into a full blown swagger.

Inspired by 100

2008-09-23T13:14:00.014-07:00

It's been awhile. I have started countless posts about nothing and never finish them. However, I have recently been inspired back to blog-dom by a 100-item post which I will now forever refer to as the mother of all blog posts . Jenn's creative list reminded me of all I am thankful for and the fact that Brady's seizure counter hit 100 the other day.

100!

I have to admit that I check my own blog almost every day around 5:00 pm to watch the ticker roll over. I reached a point where I didn't think 10 days seizure free would be possible. I love being proven wrong. In fact, I have been proven wrong a lot lately by this one...

It took awhile but Brady now says "yeah" on a regular basis. He also makes a very dinstict "rmmm-rmmm-rmmmmmm" sound when he sees, hears, or thinks about cars, trucks, planes, school buses, etc. This boy was in heaven watching airport activity from his window seat a few weeks ago.

I have always had confidence that Brady would walk but I have been pretty skeptical on the whole speech issue. It's not that I'm trying to limit him in any way, but his numerous speech evaluations have been pretty tough to swallow so I have attempted to manage my own expectations for Brady in order to plan ahead appropriately. Either way there are a number of communication options out there, and currently we are working on three.

Sign - I love sign language. It's amazing what people can do with this tool and it has proven invaluable in Brady's life up to this point. Hands down, Signing Time is the best resource for babies and kids that we have come across. A recent press release on their website stated they will no longer be airing on PBS so fill up your DVRs, people. And if you have any interest in sign whatsoever, I would strongly recommend purchasing some of their products. The Signing Time folks have produced two more Baby Signing Time DVDs which are geared to babies in particular (and worked great for us as Brady's developmental delays put him in this category for longer than usual). I have been asked to review the new DVDs on our blog which will occur within the next week. Two posts in one month - stop the madness!

PECS - Picture Exchange Communication is new to us. We had to get on board because this is what Brady's pre-school class uses (along with some sign). Brady has learned to pick the appropriate picture and give it to his teacher in order to get something he wants. I though there was NO WAY this would work (even told his teacher this before school started) and, of course, Brady now struts into class each morning and grabs the card for circle time. This system is a lot work to implement so I will post more about it once we become more proficient at home.

Speech - we continue to work on speech through weekly speech therapy. It has been a tough, very slow process but Brady babbles a little more each month. I was reading through Nate's notes from the 1P36 conference in Boston and one of the speakers reminded parents to be patient and that speech may come later down the road. I hope this is the case. If not, we have the other options to fall back on.

We missed the 1P36 conference and I'm really grateful to the other families who have posted information so we can stay informed with what's going on. We are hoping to be there next year - the candidate cities are SLC & Indianapolis which are both closer options for us.

First Week of School

2008-08-17T20:15:00.012-07:00

Tuesday was Brady's first day of school! He was so excited when we pulled up. Of course he started running the opposite way so he could get closer to the school buses.

What is up with little boys and large vehicles? He would have sat for hours watching the buses (another favorite spot is the airport pick up lane).

Can you tell which one of us had a hard time letting go?
He left us in the dust and marched into school.

Brady's teacher let us follow him into the classroom where he promptly ignored us and started smiling and bouncing on his butt for circle time. We left, I made Troy go look at some land in the west valley with me for work, then we headed back and picked Brady up four hours later.

The Brady we dropped off was NOT the Brady we picked up. He did great at circle time and, from what we heard, cried/fussed/slept the rest of the day. He wouldn't eat his snack or lunch so we made an emergency stop at Chic-Fil-A. Look at this exhausted boy.

Brady ate but wouldn't really respond to us in any way for several hours. He couldn't calm down and sleep until later that night. Troy and I were both so upset and worried. I held my breath the next morning when I pulled up to school once again. Just when I thought Brady would start screaming, he clapped and squealed. I couldn't believe he wanted to go back to school and when Troy picked him up later that day his teacher reported that "he had a phenomenal day."

Huuuuge sigh of relief. Thursday also went well and I swear this kid was so bored on Friday and over the weekend. I can't wait to drop him off on Monday morning!

Practice Run

2008-08-11T13:20:00.007-07:00

This morning was Brady's pre-school orientation where we met his teacher, aids, school therapists and the other students. There will be 5 boys in the classroom and 4 adults (one teacher, two aids, and various therapists that will rotate in). We are seriously spoiled with that ratio and have been able to put aside many of our concerns. The teacher was very experienced and confident and had tomorrow's schedule written on the board. The classroom was adorable - I have never seen such a huge room full of miniature stuff. Everything was at toddler eye level, even the kitchen sink. Brady is one of the youngest and most delayed students so I know he is going to learn so much from the big boys. Tomorrow is the first official day of school so we'll see how things go.

Brady's favorite activity lately is helping us with dishes and laundry. In fact, I can get him to do almost anything if I call him my helper (oh, how I hope this stage lasts!). He was thrilled to discover that his classroom had several little kitchen and laundry centers.

Every toy in that room was in the kitchen sink after the first hour so Brady moved on to his second favorite activity, bouncing on his butt. Let's hope he soon figures out those chairs are for sitting.I'm having trouble wrapping my mind around the picture below. We don't follow behind Brady anymore with our arms hovering out to catch him. Still, I am usually close by and have never watched him walk from this perspective. "Walk" isn't even the correct word - look at him strutting his way down the school hallway!

If he could talk I'm pretty sure he would say What you looking at, Mom? Get outta the way!

Lazy Blogger Here...

2008-08-04T08:38:00.007-07:00

I am having a hard time getting back into the blogging swing of things after coming back from our trip to Utah a few weeks ago. I keep starting a gigantic post with about 100 pictures from our trip and I never finish! I WILL eventually post it because we had such a great time I don't want to forget any details. In the mean time, we are doing great and managing to survive the heat. Troy and Brady are doing a lot of this...

And, of course, a lot of therapy...

My assignments at work lately have gotten really complicated and are always taking up more time than what I had planned. Luckily Brady has several therapy appointments near my office so I can usually see him at lunch if I can't make it home before bedtime. Still, it's hard on me to be away from him. He is getting so grown up, signing "mom" sometimes when Troy picks up the phone at home.

So please forgive me for checking in on my fellow bloggers via Google Reader and rarely leaving any comments. I love reading about all of your vacations and summer happenings and will be checking in properly very soon.

Anticipation

2008-06-27T12:25:00.006-07:00

Brady is getting steadier and more confident in his walking. Look how effortlessly he cruises around with toys in hand...

He can also stand still in the middle of the room...

We love that Brady is confident and now prefers to walk everywhere. The only problem is that he has to concentrate solely on walking or will take a nasty fall which is a whole lot different when you are in the parking lot at Target versus at home on the cushy carpet! At our IEP meeting we noticed that the floors were vinyl or thin, commercial-grade carpet with no padding. It's hard to imagine how things will go when one of us isn't hovering and ready to catch Brady. His defensive reflexes have improved tremendously, but it's the unexpected stuff like tripping on something he hasn't anticipated or attempting to lean on kids who might move out of the way at the last second that is causing most of Brady's falls.

In our IEP we agreed to purchase a helmet for Brady to use while on the playground. I guess we will just see how things go while he is indoors at school. He has been known to fall off chairs unexpectedly so we have been practicing for school...

I have never been so excited and nervous about something as I am about Brady going to school. I can't wait to meet his teacher and I am thrilled that Troy will get a break for a few hours each day. I guess the hard part for me is that I can't ask Brady about his day. Do you think they will let me peek through the windows for the first few weeks? Hmmm... didn't think so.

IEP Is Done!

2008-06-20T15:33:00.006-07:00

Troy has been diligently working for months on all the necessary steps to put Brady's Individualized Education Plan in place. Brady was evaluated by the school district on Tuesday, we had our big meeting on Thursday and tah-dah we are done! There were so many steps that had to take place prior to this meeting, we are relieved the IEP is now in place and that we finally know the where and when Brady will go to school.

We had heard many horror stories about this process (parents having to fight the district, sue the district, etc., etc. in order for their child to get an appropriate education). I even attended a one-on-one coaching session to learn how to better advocate for Brady during this process. Thankfully, the process went more smoothly than we had anticipated. Our local district was very efficient and had the school psychologist, PT, OT, speech therapist and a pre-school teacher evaluate Brady simultaneously. The same group then met with us two days later and had his entire education plan loaded onto their laptops in time for our meeting. Troy and I were up until 1:00 am that morning creating our own list of everything we wanted for the Bubs and those school people delivered everything on that list and a little bit more. No fighting or pushing for services required.

Because Brady fell into the severely delayed category in most areas of development our IEP team suggested he attend a different pre-school program which has a 2:1 child to staff ratio rather than the typical 5:1 ratio. Additionally, Brady will attend four hours per day, four days a week rather than the typical 2.25 hours. Obviously this arrangement has calmed many of our fears regarding Brady's personal safety and communication abilities. We were a little disappointed that he will attend a school nine miles away rather than the elementary school down the street, but we have the choice to move him to the standard special ed. preschool at any time during the school year. That was the most surprising part of this process - that we actually had choices.

The three of us will go to school together on August 11th to meet Brady's teacher and give her final instructions regarding his seizures and feeding instructions. Then our little Bubs will start school on August 12th! I had just started fretting about finding a backpack and lunchbox to replace Brady's diaper bag and look at the surprise I got in the mail the other day...

My dear friend Michelle sent this "just because" and I hadn't even told her about Brady attending pre-school. Isn't it amazing how the people close to you are just on the same wavelength sometimes? Thanks, Michelle!

By the way, Brady was determined to be only moderately delayed in gross motor skills and social development. I'm positive this is due to Coach Farnsworth's daily sports training and the fact that Brady dazzled those people with his smile!

p.s. I found and excellent blog regarding disability advocacy for anyone out there who might want tips in effectively advocating during meetings such as an IEP. Enjoy!

Mystery Me

2008-06-13T15:15:00.005-07:00

Okay, so several Internet friends thought that was me in the pool with Brady and I am realizing that I NEVER post photos of myself on the blog! Oh, to be in my early twenties and look like Brady's cute, tan swimming teacher :-)

I hate having my picture taken. I keep saying I will be in more pictures when I lose weight, etc, etc. It's been 3 years since this whole ridiculous picture stuff started so I just plain need to get over it. The most recent picture I could find was from Halloween - here I am.

Swimming Lessons

2008-06-11T10:45:00.013-07:00

After my last post I thought it best to show some fun stuff going on around here. How about a picture-intensive post for once?

Our little fish is LOVING special needs swimming lessons. I wish I had zoomed in closer because he has a huge grin in most of these pictures.

Entertaining the big boys (or likely the other way around). A couple of the typical kids who go to the pool with their special needs siblings have adopted Brady. One always asks his mom "where is my baby?" when they get to the pool. These boys are particularly tolerant and understanding of Brady's less typical behavior - they are just amazing kids.

Playing Toss the Ring with the big boys. "Can we put it on his head and see if he can find it?" He he.

Showing off more sticking-out-of-tongue skills...

And because I just can't stop myself from typing lengthy paragraphs, I have to tell the cutest story. One older boy with Down Syndrome was struggling to get his brand new goggles out of their packaging. Troy offered to help and was able to break open the plastic (I heard they now make special scissors just for this...must find some). Later I overheard this boy telling his friend "Did you see that muscle guy? He is so strong. Yeah, he's a GREAT guy." A lengthy conversation ensued regarding exactly how great this guy is and exactly how strong his muscles are. Needless to say, Troy and "the smiley one who always wears sunglasses" are very popular at the pool!

In THAT Place

2008-06-10T09:55:00.011-07:00

So... yeah, I had to reset the seizure counter yesterday. This is a frustrating setback. Brady had a low grade fever yesterday and we are hopeful that this was the cause of his seizure and not some other underlying issue. When we last met with our neurologist he explained that the odds of a seizure medication working (and by working I mean getting rid of ALL seizures) go down with each medication failure. If one medicine doesn't work there is still a strong chance that the second will. But if two meds fail, the chances of success diminish substantially. Three or four failures and one may be facing Intractable Epilepsy. Thankfully, Brady is on a medium-ish dose of Keppra so we could increase the dose several times before we have to switch to or add another med.

I thought I was used to these episodes and would just roll with it. But the truth is that the last two months without seizures have been life changing and I am terrified that might change. We have gone out on dates. I have been better able to focus on work while I am at work. Brady hasn't missed any therapy appointments, play dates or swimming lessons. We have all routinely slept through the night. I have even started to shed some of the 50 extra pounds that have piled on (my chosen method of stress relief) since Brady's birth. I am trying to learn from all of this and be able to take care of myself better whether or not stressful circumstances are present in our life.

So this is me panicking and projecting one five-minute episode yesterday afternoon into the indefinite future. I have been reading a book on the process of grief that every parent of special needs children goes through. This panic is normal. It's part of the process and I am learning to better recognize this and not get STUCK in this one particular place. I have also learned it's normal to jump back to different phases of the grief process even though I have already reached (or thought I had reached) the phase of acceptance. I really should have read this book, um, TWO YEARS AGO!

The book is out of print and was written in the '80's . The language is a bit out of date (ahem, somewhat un-PC) but the message is timeless. I would recommend it to any parent of children with special needs. Thanks to the Foundation for Blind Children for introducing us to the book through their After the Tears Program. And thanks to Troy for bringing me a copy after I couldn't make it to the program last week. I am gearing up for the meeting this Friday because I always ugly cry in front of those wonderful people!

More of Him

2008-05-28T20:08:00.005-07:00

We have been working on this little development for, oh, a year and a half.

If you squint just so, you will see Brady's little tongue sticking out. Of course we have seen his tongue before, but it has never ventured past his lips. The muscles in his mouth have been especially slow to develop and the least responsive to therapy. Slowly but surely Brady's oral defensiveness has lessened and he has allowed us to touch his cheeks and lips and brush his teeth. On Saturday morning he gave me his best Good Morning smile, stuck out his tongue and hasn't stopped since.

This may sound silly but when you see a part of your child that has never shown itself before it's a really BIG deal. I can't stop thinking about it all day long! I call up Troy from work and ask if Brady is still sticking it out. Later Troy texts me a picture of Brady licking an ice cream cone. This boy who has had feeding therapy weekly for the last 18 months finally licked one of the sugary treats his therapist has patiently put in front of his mouth all this time. I am anticipating a later post that goes something like this... "how do I get him to stop sticking his tongue out at people?" He he.

Catching Up

2008-05-16T20:58:00.007-07:00

Certain family members have informed me it's high time for some new pics of a certain little someone. What can I say, we had a broken digital camera (AGAIN) and I have been working some serious overtime lately. Not that I'm complaining. Work has been extremely slow since Christmas (and, ahem, I work on commission!) so I am thankful for the work. What a great feeling to wrap up my last deadline today, head home early and go out to dinner with my boys. Troy is working on dropping Brady's afternoon nap so it was no surprise that Brady started to drift off to sleep mid-chew. He slept in my arms while I ate my Pei Wei spicy chicken salad with one hand. I am cherishing each and every one of these cuddly moments now that the Bubs is becoming more mobile with each passing day and far less interested in me and my brown rocking chair!

Troy has been very busy coordinating the massive paperwork and extra appointments that must take place in order to 1) get Brady's fall pre-school situation set up and 2) get us qualified for long term care. We received our long term care approval two days ago and feel EXTREMELY blessed right now. This means that Brady will be able to continue all of his therapies in addition to pre-school. We won't have to say goodbye to our wonderful therapists and bear the responsibility of habilitating him on our own. Long term care will also cover the medical expenses that our insurance company doesn't cover. We received a secondary insurance card with zeros next to "Office Co-pay", "ER Co-pay", "Prescription Co-pay", etc. It's difficult to get approved for this program, therefore we're still in a bit of shock over the whole thing. Ironically, we learned it was Brady's recent Epilepsy diagnosis that likely solidified our acceptance.

This is a program specific to the state of Arizona. Most states have similar programs, but they vary widely in funding. We have been told if we lived in New York or California we would get so much more. Unfortunately, in other states, the programs are vastly under-funded and countless deserving families receive no assistance whatsoever in raising their children with extraordinary needs. I hesitate to give the details because I just find this whole funding situation so unfair. But I truly believe that knowledge is power and I want other parents to know what is available out there. On top of the medical cost sharing, we are qualified for a certain number of hours of respite care in our home each month. Assuming we can find a respite provider we are comfortable with, the state will pick up these costs as well. Respite care is meant to allow parents time to run necessary errands, spend quality time together, or simply do household chores that so often go undone when you can't take your eyes off a high needs child. Troy and I learned the hard way how exhausted and depleted we were capable of becoming when we dealt with the escalation of Brady's Epilepsy a few months back. This program will provide us a safety net, both functionally and financially.

It feels strange, and a little humbling, to receive all of this help. Brady is doing so well right now that some days I almost feel guilty about all of this help. Yet other days I see typical three year olds and realize that the gap between Brady's development and theirs is starting to widen. I constantly hear of this window of time in which kids' minds are so capable of learning and I am so grateful we have some serious assistance in maximizing what is left of this window. The bottom line is we are lucky... in so many, many ways. I said this to an ER doctor once and he laughed at me and muttered under his breath, "yeah, reeeally lucky" as he looked down at Brady. What an A-hole. We are lucky I didn't lose Brady at 25 weeks when I started to dilate. We are lucky that our geneticist's initial hunch that the Bubs had a life-limiting metabolic disorder was wrong. We are lucky that Brady is silly and loving and stubborn. We are lucky to have supportive friends, family and countless professionals willing to help. Just plain lucky.

We are also lucky that Brady met a new friend. We affectionately refer to J. as "hair twin."

34 Days & Counting

2008-05-06T20:45:00.003-07:00

It's hard to believe Brady has made it over a full month without a single seizure. If some good has to come out of this whole Epilepsy issue, it is that the world looks like a whole new place if you are lucky enough to begin living seizure-free.

Brady is sleeping through the night without the random twitching and jerking of his little body that had been waking him every few minutes. He sleeps in the guest room on a mattress on the floor. Classy, I know. It doesn't hurt if he rolls off the bed in his sleep so his little make-shift bedroom works for now. Brady loves that room for some reason and refuses to sleep anywhere else. He goes right to sleep like a perfect angel, ALL BY HIMSELF, even though his parents tried to mess with his sleeping habits by cuddling him tightly for the past nine months. He usually waddles out to find me when the sun comes up.

We are all sleeping through the night on a regular basis and thankfully have our happy boy back. Milestones are popping up all over the place and Troy and I are feeling comfortable enough to have a babysitter come over on Friday night. Now that I think about it, Brady handled these past few months so much better than we did. He prefers to sleep alone now while we still can't turn off the video monitor. We will get there. Baby steps. Thank goodness for resilient little boys!

Music to my Ears

2008-04-29T11:32:00.006-07:00

Last night Brady was pointing and grunting at something and I couldn't figure out what he wanted. I started in with my usual list of questions...

Me-Do you want signing time?
B - Brady shakes his head for no
Me - Do you want a drink?
B - Brady shakes his head for no
Me - Show me the sign for what you want
B - Shows me his sign for "signing time"
Me - (exasperated) Brady, TOUCH what you want
B - Waddles over to his bucket of toys and touches the lid
Me - Oh, do you want me to open your bucket?
B - (excitedly) "Yeeeaahhhh. Yeah."

WORDS. THEY WERE WORDS. Clear, perfectly formed words. Words with no consonants, but words nonetheless. Troy and I whipped our heads around and watched each other's jaws hit the floor. "Did that REALLY just happen?" Troy confirmed that it did indeed happen and that I wasn't dreaming or high from my cold medicine. Then Troy made a simple statement that moves me to tears now that I think about it. "Do you realize that we just heard what his voice really sounds like for the first time?" We did. And it was the most beautiful, nasal little boy voice we could have ever imagined.

We tried to shrug it off as a fluke, not wanting to get too excited. Brady has, on occasion, answered "eeeeeees" as "yes" to questions. And then he forgets how to do it for months at a time. But Troy just called me at work to tell me that he got another "Yeah" when he started the car and asked Brady if he wanted to listen to his music.

I couldn't think of a more appropriate time to show this photo of our naked boy who is covered in mustard and appears to be singing along with Daddy. Now please excuse me while I go pick my heart up off the ceiling.

Walking Details

2008-04-25T06:55:00.007-07:00

I thought I would share more detail about Brady walking as I know a few other 1p36 parents are reading our blog. As do many other kids with developmental issues, Brady has low muscle tone (hypotonia). However, he has always been more hypotonic in his upper body and abdomen than in his legs. This probably explains why it took him so long to master sitting but then he quickly progressed to walking. Here is an approximate timeline of Brady's gross motor skill milestones.

6-8 months - could sit in bumbo (head control) for a minute or two.
10-12 months - could sit in bumbo or exersaucer for extended periods. Also started bearing minimal weight on his legs.
12 months - rolled from stomach to back, although he didn't do it very often. He was just never much of a roller. He never really rolled from back to stomach. He just HATED his stomach and has never tolerated tummy time until just recently (around 30 months).
16 - 18 months - could sit up for very brief periods.
18 - 20 months - could officially sit up. However, he had no defensive reflexes (putting hands out to catch himself) and could not get to the sitting position by himself.
20 - 24 months - defensive reflexes slowly improved and he could catch himself from tipping over most of the time, however could still not get to sitting on his own.
24 months - started crawling on his 2nd birthday. It was slow at first, he would take 2-3 "steps" with his arms, then sit up and rest. He is now also able to get in to the sitting position on his own but continues to roll to his stomach and use his arms to sit up because of his weak belly.
27-28 months - started pulling up to standing. Could stand unassisted for brief periods. Could take 2 - 3 steps before falling into our arms. Can walk with his fake walker (see below).
29-30 months - can skillfully walk around holding on to furniture. Does not have good defensive reflexes from the standing position.
Currently (33 months) - Brady is pretty good at walking. His defensive reflexes have improved a ton, meaning that he can often (90% of the time) put his hands down on the ground and stop himself from falling on his head. He doesn't pay attention to where he is walking and will often trip on toys or might trip when moving from one surface to another (tile to carpet, etc.)

We have a very talented Physical Therapist who Brady has seen twice a week for the past year and a half. I wish I could share all the PT details but Troy has taken Brady to most of these appointments. Troy will post the details later but for now here are just a few toys/tools that have helped Brady.

Our PT has always used a swing similar to this one during all of Brady's appointments.

This swing helped Brady's trunk control tremendously. He required a lot of help in the swing initially but now swings and spins wildly in it without losing his balance. We have toyed with the idea of getting one at home because he really craves swinging for sensory input. If you do get one make sure to buy several mats to go underneath. We got some affordable mats at Costco and they were great for Brady to sit and play on when he was still falling over a lot and they saved Troy’s knees while Brady was learning to roll over, sit, and crawl. They allowed us to let him fall and eventually acquire defensive reflexes without hurting himself. This was the hardest part about watching Brady learn to walk. We used to wonder if his reflexes would ever kick in. We used to watch other babies fall when they were learning to walk and could not believe how graceful it was. I will never forget the sound the first time Brady went straight to the tile.

As I mentioned before Brady has better tone in his lower body. In fact we just met with an orthotist who said his achilles are a bit on the tight side. We never used a walker because by the time Brady was coordinated enough to push one he was very close to walking on his own. We did buy this push cart...

It is $24.99 at IKEA. It was the only push toy we could find with a handle tall enough to accommodate a taller/older toddler. Brady would lean his body weight into it and it would shoot out ahead of him (with Brady falling on his face) so we put a 10 pound weight inside to slow it down.

As for ankle support our PT did not feel Brady required DAFOs so we have been using orthopedic insoles along with a well-structured, supportive shoe. I would love to buy him a pair of little Chuck Taylors but they are just fabric with little support so we stick to miniature versions of shoes we might work out in.

I'm not really clear on what timeline is expected for kids with 1p36 deletions with respect to walking. I hesitated to post Brady's timeline because I remember how frustrated I used to get with typical timelines. When I was pregnant I signed up for a weekly email that told me what exactly was happening with the baby and after Brady was born the emails switched to developmental milestone updates. Every single week I would cry when I got that stupid email and realized Brady had missed yet another milestone. Then I would take him to the Dr. and they would tell me he was fine. $%*@! So please don't rely too heavily on our timeline. It is simply our experience to date, and while our kids have so many similarities, they will always be unique.

Learning to Walk

2008-04-19T17:00:00.008-07:00

Brady is now taking Keppra and has been seizure free for more than two weeks! We didn't realize the extent that Brady's development was being affected by the seizures until they stopped. Brady's new walking skills had started to regress as his seizures increased. However, in the past two weeks Brady's skills have resumed and he has hit several new milestones. Since I will likely never figure out how to post videos I took some photos of him walking in the park last night.

New this week... getting to standing without pulling up on anything...

It catches me off guard every time Brady takes off on his own towards whatever catches his interest. Our communication with him is currently limited to his signing and pointing, following his eye contact, and a lot of guessing. Walking independently has improved this process as Brady can get to most of the things he wants. Often he will sneak up behind me and growl to scare me. He then leads me by the hand to our brown chair to read books.

The feeling of his hand in mine as we walk side by side is indescribable. This is something I have silently hoped for but have learned not to assume would happen. I stopped wishing for these milestones aloud and instead have tried to accept whatever may or may not come. This approach has lessened the sting when therapist after therapist says "he will never speak." And this approach has made every milestone, no matter how seemingly insignificant, all the more reason to rejoice. As a parent to a child with special needs I have learned there is a fine line between hope and denial. It's a tight rope I continue to learn to walk every day. It is in this way that Brady and I have learned to walk together. He is a stronger force and a more significant teacher than I could ever have imagined before he came into my life. Love you, Bubs.

Date Night

2008-04-13T12:30:00.004-07:00

Last night Troy and I went out to dinner WITHOUT BRADY. This was our first date of 2008 and we can't thank the McNaughtons enough. Troy has known them since college and we are so lucky they live in AZ! They are great friends and were, of course, were great with Brady last night. He didn't even notice that Mom & Dad left and went to dinner. Unfortunately they also introduced Troy to Guitar Hero and I am never going to hear the end of it. G.H. is way too hard for me and made my hands hurt! Has this happened to anyone else or am I getting old and arthritic?

We also had great fun on Friday night with Crystal and Chris who have frequent business meetings in Phoenix. We stayed in the same hotel downtown and had breakfast together. Troy adn I watched nearby fireworks from our window and rented movies while Brady slept. Who knew Brady would love hotel life so much? Thanks for the room and the fun, Crystal and Chris!

I dare say we actually did some stuff this weekend, none of which was documented in photos! I'll leave you with this little tidbit in lieu of a photo...

It's going to be a looooong summer!

Growing Pains

2008-04-08T14:07:00.006-07:00

This week Troy and I met with our local school district to kick off the monstrous process that will eventually be Brady's Individualized Education Plan (IEP). This IEP will determine where Brady will go to school this fall and the level of services he will be eligible for. Our every day vocabulary is filled with new acronyms which I often forget are foreign to many parents. I suppose I could write a lengthy post defining these abbreviations but today I just wish there was an acronym for how I feel.

On Tuesday Troy and I observed several special ed. pre-school classrooms and were quite shocked by what we saw. The kids looked normal. They sat in chairs around a table eating snacks and chatting while their backpacks were lined up near the classroom door. This setting was in sharp contrast to other groups with which Brady is involved where he might be one of the few children who can walk, who can see, who can eat.

I know pre-school is what Brady needs. I know these classrooms are full of typical students whose purpose is to model appropriate development and behavior for the differently-abled. But will they understand Brady? He can sit in a chair but will fall at any moment. He can eat but will stuff his mouth full and choke if not closely monitored. He can't talk. He will have a freak out of epic proportions and burst the capillaries in his cheeks if someone forces an uncomfortable or unknown activity upon him. How will a new teacher possibly begin to understand the intricacies that are Brady while juggling 10 other children?

I imagine these feelings of fear and concern are not unique. This is likely how all parents feel when they prepare their little ones for that first day of school. Or maybe how parents feel when their children charge out of the house for the first time, alone, with car keys in hand. And quite possibly this is stirring up some of what I felt when I dropped Brady off at daycare on his 42nd day of existence, thinking "how will she feed him? and how will I possibly get through this day?" And then I returned to a happy, full baby and realized that this day was not hard for him. It was only hard for me.

I know Brady needs this. He needs to be around more kids. He needs to not be the center of attention at all times. He will grow and thrive and learn. And I will find a way to manage my fears and let go, just a little bit, of my baby.

Boston or Bust

2008-04-07T10:11:00.006-07:00

We belong to a yahoo group consisting of other families or caregivers of children with 1p36 deletions. These parents are amazing, offering support and advice to virtual strangers on a daily basis. This fall the group will hold its second annual conference (we weren't able to attend last year's in Jacksonville) and we all voted on either Cincinnati or Boston for this year's location. Any guesses as to our vote?

If everything comes together as planned this will be a trip of firsts. Neither Troy nor I have have been to Boston and we have never traveled with Brady farther than the 1.5 hour flight from Phoenix to Salt Lake City.

In my perfect world we would take along a helper so Troy and I can attend the meetings without distraction and can sneak off for a Red Sox home game which will conveniently occur during our trip. Also, Brady will be a perfect angel on the lengthy flight which will be paid for by one of the organizations I am learning about which pays for families to attend medical appointments or conferences.

In reality I just hope that we make it there in one piece, that the fall weather will cooperate and that Brady will have a seizure free trip. I will gladly search the couch cushions for funds and juggle/wrestle Brady through each and every meeting. It will be worth it to meet all of the helpful online voices in person that make up our newfound 1p36 family.

p.s. check out our new "How Is Brady Today?" counter. We are currently over four days seizure free!

Home Sweet Home

2008-04-04T12:50:00.003-07:00

We're home! We were able to record one seizure, got tons of face time with various neurologists and epileptologists (a new word I learned this week) and have put Brady on a new medication. So far, so good. We are almost 48 hours seizure free.

Now if we could just get the glue out of Brady's hair. The nurses suggested mayonnaise - so gross. Brady smells like an egg salad sandwich but his hair has never looked silkier ;-)

Seizure Update

2008-04-02T17:16:00.005-07:00

Just thought I would check in quickly and let everyone know that, due to an alarming number of seizures in the past 24 hours, Brady has been re-admitted to the Epilepsy Monitoring Unit at St. Joseph's Hospital in Phoenix.

This is not a bad thing. This is not a scary hospital stay. The type of seizures Brady is having are not dangerous to his health in any way. They are just stressful and in need of being figured out.

We have never been able to record one of Brady's seizures while he is hooked up to an EEG machine and therefore our neurologist is to some extent flying blind when helping us pick the right course of treatment. We stayed in the EMU for three days in October and Brady had no seizure activity whatsoever to record. Instead, he was happy as a clam (see below) and the nurses treated him like a rock star because they don't typically take care of little ones.

This morning our doctor met with us for almost an hour and a half and patiently answered each and every question. I love him for this. It's so rare to get undivided attention from physicians. The EMU is usually booked out at least a month and somehow our Dr.'s staff got us squeezed in at the last minute. I came in to the office this afternoon to check in with some clients and Troy just called me to say they already have recorded one seizure. How strange is it that we were both pumping our fists and yelling "YES! HE HAD ANOTHER ONE!" This EEG information will be extremely helpful in determing exactly what type of seizures Brady is dealing with and from which part of the brain they originate. Also, this means we won't have to spend an indefinite amount of time there - last time we only lasted three days trying to "corral" Brady in a little pen on the floor and keep him from pulling off his "special hat" and the wires underneath.

Brady is feeling pretty well. He is sleepy and cranky for an hour or two after each episode but is very much himself during different windows of time throughout the day. This morning we went to the park. Tonight we will spend the night in the hospital. Epilepsy is weird that way.

We know it will take some time to find the right meds but we are very hopeful and encouraged now. We still have many, many options to try which is a great thing.

Identity Crisis

2008-04-01T12:33:00.002-07:00

After numerous complaints that our blog's polka dots were hurting Troy's eyes and were not "man blog friendly," I have simplified our blog template with a strange greenish brown blah color. I will miss the dots but am letting them go for the sake of encouraging more man posts.

I know it sounds silly but I have been thinking a lot lately about what I want our blog to be about. I have been wanting to post a lot more about 1p36, diagnosis, therapy, and the differently-abled in general. It's the one topic on which I feel I really have something to say. And my something to say has been nagging at me like crazy! I am such a rookie in all of this. Blogging, parenting, disabilities, etc. But I think I'll shove a bunch of info into the blogosphere anyway and learn as I go.

Please keep the computer on, Grandma, our little blog is certainly having an identity crisis but will surely continue to feature countless photos of the Bubs.

The Good

2008-03-29T21:35:00.009-07:00

Lately our days have go one way or the other - terribly bad or insanely good. I am happy to report that today was of the insanely good variety! I am learning quickly to better appreciate the good days so they can carry me through the challenging ones.

Today started off like this ...

I get a secret thrill over Brady's obsession with reading. He has a Signing Time book and can recognize what the characters are signing and will often sign back. In his own way Brady is reading. So take that, you 16-month old reading prodigy I saw on the Today Show!

Here he is a few minutes later clinging to my sweats while I am trying to get ready.

Just as I start to feel annoyed that my hair will dry funny and that my pants are falling off Brady asks for "up", grabs both of my cheeks, plants a giant kiss on me, lunges to get back down and goes about his merry way throwing toys into the bathtub. I could not ask for a sweeter boy.

Later on...

Today Raising Special Kids held their annual Special Day for Special Kids at McCormick-Stillman Railroad Park in Scottsdale. We had so much fun last year we have been counting down the days and praying Brady would have a good day.

I have to admit I was not a fan of the petting zoo. I was wearing flip flops and was way too worried about stepping in poo.

We ran into a good friend from our music therapy group at Foundation for Blind Children and watched baby Z for a few minutes. Brady is getting old enough to touch babies "soft." Woo hoo!

By the way, Brady is blessed with perfectly normal vision. The kind staff at Foundation for Blind Children took us in simply because his eyes are extremely sensitive to sunlight (why he is always wearing sunglasses in outdoor pics). We are extremely fortunate to be involved with these organizations and I really wish something similar existed in Utah.

Thanks for reading about our day. I hope yours was as good as ours. :-)

On Friends...

2008-03-27T11:13:00.003-07:00

I posted late last night, went to bed, and when I got up this morning to check our blog I found so many wonderful and supportive comments. We are so incredibly fortunate to have such amazing and loving friends!!!

A few weeks ago I attended a support meeting full of parents of children with various disabilities. Led by a licensed therapist, we shared our various frustrations and discussed different means of coping. Virtually all of the other parents shared their sadness over losing most of the friends they had before their special children came into their life. I sat there thinking "whaaaaaaat?" and avoided eye contact with the therapist for fear she would ask me about friends. I felt a tiny bit guilty sitting there thinking that NOT A SINGLE ONE of our friends has not been absolutely supportive to us!

I have most likely broken down in front of all of you at least once, or maybe even shut down and avoided friends altogether during a difficult period of diagnosis and grieving. I am so appreciative of your patience and understanding. And thank you for turning my tears of sadness this morning after Brady had yet another seizure to tears of gratitude. We love and appreciate you all so much!

p.s. Troy continues to discuss our options with our neurologist (they speak by phone at least once a week). We still have several options available to us - it's just a matter of trying each one out which will take a bit of time. We will keep you posted.

Lately

2008-03-26T17:38:00.003-07:00

I love blogging and the opportunity it presents to record our little family's history, especially considering we don't scrapbook or write in journals. However, I have hesitated to blog about some recent events because I am having a difficult time staying positive!

We were hoping that putting Brady on seizure meds would decrease the frequency and/or severity of his seizures but unfortunately the opposite has occured. He has had 2 to 3 seizures per week lately, some of which have clustered together and turned into grand mal seizures. When this happens we administer a valium suppository and it then takes Brady two or three days to return to normal activities like walking or going to his usual therapy appointments. He is averaging one or two good days a week when he seems like himself.

We are becoming more skilled at handling each situation as it arises and no longer feel the need to call the paramedics. However, each 'event' is still incredibly frightening. It's also becoming frustrating to cancel all of our plans at the last minute and continue to sleep with Brady during all naps and throughout every night. We are finally admitting that we need some help and are starting the process of hiring a respite care provider. Respite basically consists of babysitters who are trained to care for Brady's specific needs and could watch over him while we are home and need some rest, while Troy goes on errands during the day, or in the rare possibility that Troy and I could go out on a date. It might sound insane that we have never hired a sitter since moving to AZ but we are paranoid parents who haven't really dared to ask for help followed by directions for what to do if Brady turns blue.

We have met some amazing families on our journey with Brady, many of whom have extremely medically fragile children, some with limited life expectancy. This has brought me some needed perspective and has helped me adjust my expectations of what I thought my life was going to look like once I had children. I still have my bad days but will readily admit that the positives in our situation ALWAYS outweigh the negatives. I mean, have you seen this smile?

I feel better already. Thank you, internet, for helping me stay positive.

100% Random

2008-03-21T21:52:00.001-07:00

Not much to blog about this week. You know you're getting desperate to get out when your idea of an exciting Friday night consists of checking out the new Whole Foods store down the street. Here are some pics of a few of the people we run into each week...

This is Brady's physical therapist, Amber. Brady has worked with Amber twice a week for over a year now. I'm sure he considers her family because, without exception, he squeals with delight when we pull into the parking lot on Wednesday & Friday mornings. That stinker has even been known to give Amber extra hugs and kisses in attempts to distract her from particularly challenging sessions.

This is Betsy, Brady's new speech therapist. Speech has been especially challenging/frustrating but Betsy (along with Brady's feeding therapist Angie) never gives up! They are even traveling to the east coast this month for training which they think will help Brady work with them more effectively. We have a handful of other therapists we absolutely love but I don't have pictures yet!

Last but not least... Miss Jules, who despite her Diva appearance is actually very tolerant of BYU t-shirt wearing little neighbor boys :-)

More Than You Ever Wanted to Know

2008-03-19T23:22:00.002-07:00

Here it is…the long awaited (or at least long winded) 2nd half of the “Farnsworth Tag”

Ten Years Ago-
I was senior at BYU playing baseball and majoring in health (minoring in pe/coaching…I insanely added drivers ed as a second minor years later).

Five Places I Have (not?) Visited-
I have been very fortunate when it comes to traveling the country. There are only a handful of states (literally) that I have yet to see or step foot on. 10 years of living on a bus and in hotels took me to some amazing places. Here are some of my favorite (and not so favorite) places that I have either lived or visited. I listed them by region since I know we all have March Madness on our minds. Most of my opinions are formed by the experiences I had at the ball parks, hotels, and hole in the wall restaurants (After all, what else in life matters?). Oh yeah, people matter too. I have met some amazing life long friends in every region along the way.
1. West (I may be a little biased but Utah tops the list…too bad I never took advantage of the mountains before we moved away)
Places to visit: Lake Powell (I am forever in debt to the Culley’s), La Jolla...home of my first attempt at surfing (Kajsa calls me the biggest poser but that’s ok, I loved it…all 15 or 20 seconds of it!!), and Las Vegas (there’s nothing like the sound of money hitting the bins as you enter the casinos…luckily I don’t drink and I’m too poor to gamble much or I’d really be in trouble)
Place to avoid: Adelanto, CA (Unless you like tumbleweeds and ending your baseball career!)
2. Southwest
Places to visit: Phoenix, and Houston (NBA, MLB, NFL, NHL, PGA, Tennis Masters, Major Universities, Spring Training, golf and tennis year-round, and great restaurants (especially in Houston)…need I say more
Place to avoid: The stretch of highway from El Paso to Houston!
3. Midwest…I loved the Midwest (the weather was crazy and I loved the people/lifestyle. I don’t know why but I am fascinated by farming and I couldn’t believe the first time I saw the sky turn green right before a crazy storm hit and tornado sirens were sounding).
Places to visit: Sioux Falls (I never thought I would say it but I loved living in South Dakota…but then again I also loved living in Price, UT so take it for what it’s worth!!), Minneapolis/St. Paul, Chicago, St. Louis, Kansas City, Lincoln
Place to avoid: Clinton, IA (it literally stinks there.)
4. Northeast…Although the West/Midwest/Southwest is more my style, it is crazy when you realize how much history there is in this part of the country. I also could not believe how green it was the first summer that I spent in Upstate New York.
Places to visit: Washington, D.C. (we are counting that as northeast), NYC, Boston / Foxboro (Ok so I’ve never actually been to Boston or Foxboro but I know they would make my list after taking in a Red Sox and Patriots game. I’ve seen the Patriots play in Miami, and the Red Sox play in Phoenix but I have not seen them play at home yet.)
Place to avoid: All freeways at rush hour.
5. South
Places to visit: Clearwater Beach, South Beach, Coco Beach, Key West, Myrtle Beach…see any pattern
Place to avoid:

I Enjoy (surprisingly these are not in any particular order)…
1. All sports (tennis is my sport of choice right now)
2. Playing the guitar (especially with friends)
3. The Outback Special…medium rare, sweet potato (with butter, sugar, and cinnamon), about 3 loafs of the bread, and salad with ranch
4. Learning (but I hate reading)
5. Music…Here are my all time favorites (this one is in order of course)
1. Counting Crows
2. 3 Doors Down
3. Toad the Wet Sprocket
4. Goo Goo Dolls
5. Pearl Jam (Ten Only)
6. Vertical Horizon
7. Jeremy Camp
8. Our Lady Peace
9. Phil Collins / Genesis
10. #’s 1-9 acoustic
6. Eating bowl after bowl of cereal before bed like I’m still in High School
7. Water and Sun (Water-skiing, surfing, swimming, the beach…I love it all)
8. Rain (Especially the laugh out loud, because you can’t believe how hard it’s coming down rain) 9. Ocean, Mountain, Forest, Lake, River, Farmland, Desert (or any other) Views that makes a location unique
10. A good burger
11. The 4th of July (It doesn’t get any better than baseball, barbeques, and fireworks)
12. A good laugh
13. T.V. (see #12)…Friends, Seinfeld, Everybody Loves Raymond, Two and a Half Men and my new favorite…Rules of Engagement
14. Late night Donut runs
15. Listening to Kajsa play the piano (Don’t ask her though…she won’t play if you do)
16. Reading cd inserts to find other musicians’ musical influences
17. Fast Food…We currently live less than one mile from an In and Out Burger (A friend of mine likes to give me grief because I always give directions using fast food restaurants as land marks)
18. Being Mr. Mom
19. Doing things late at night
20. Brady’s smile/laugh

3 Bad Habits
1- I’m obsessive
2- I’m cheap
3- I’m stubborn

5 Things You May Not Know About Me
1- I’m a list maker…everything has to be ranked (I found out that this may genetic after I found lists upon lists in my Grandma’s drawer with things like: soups I like…soups I really like…soups I don’t like…etc)
2-I have recorded 2 acoustic cd’s (sort of)…One contains original songs and lyrics (which my friend Curtis and his brother Adam later took and added guitar solos, and backup vocals and gave me as a gift). The other cd contains covers of some of my favorite songs.
3- I have driven across the country twice without stopping for more than a couple of power naps. I did this once with a friend from D.C. to SLC and once by myself from Jacksonville to SLC…I do not recommend this unless you enjoy hallucinating and urinating on yourself because you’re too tired to realize your clothes are in the line of fire.
4-Since leaving for college I’ve had at least 25 addresses changes (only counting those that were for at least a month or longer). These changes included 16 cities and 11 states.
5-The only place I’ve been outside of the U.S. is Winnipeg, Canada.

5 Jobs I’ve Had
1- Office runner (Howells Systems)…A new family tradition
2- Construction (ok grunt) Worker…I still laugh at this because I am useless when it comes to fixing things and my co-workers had to play a game of charades every time they needed a tool.
3- Personal Trainer (Bally’s)
4- Assistant Coach (Houston Christian High School and BYU)
5- Head Baseball Coach / Health and PE teacher (Timpview High School)

I know it’s long but once I start on something (as you now know) I obsess until it’s done. Good luck to all of your brackets…except for you Kajsa…this is finally my year to beat you (unless of course you win the $500 in your office pool again like last year).
I tag Matt & Sara Staker and Curtis & Tami Sanders

Where Is The Man Tag?

2008-03-19T07:37:00.000-07:00

Troy, we are all anxiously awaiting your tag! I know you have been preoccupied by your NCAA brackets as you are trying to beat my picks at least once in your lifetime. But some of us really want to see more stuff about you on this blog.

I know you started working on it the other night and got frustrated by how long it might take after you spent a good ten minutes rewording "I got tagged by Kajsa and Jane" because it sounded too dirty. No one was fazed by your SLCC Balls comment over at Jenn's blog so I wouldn't worry about it too much. Also, I promise I will stop giving you grief over not mentioning me in the "10 years ago" category.

Easter, Brady Style

2008-03-16T08:20:00.000-07:00

Our first Easter Egg hunt! The HOA loaded the park with eggs and made all of the kids wait 15 minutes longer than initially planned. I thought there was going to be a riot - the bigger kids were angry, yelling, and grabbing the yellow tape ready to destroy!

Ready, set, go...

Brady thinks eggs are boring, eats sand and lunges for Mom's camera.

Maybe this is because Mom tried to pass off her purse as an Easter basket.

Meeting up with Dad for some pizza at Sauce was much more Brady's style.

Enough with the pictures!

Happy Easter!

Clarification

2008-03-14T20:21:00.000-07:00

Hmmm.. now that I read my previous post I think it could be taken a couple of different ways, one of which might be slightly offensive!

I actually had two separate thoughts when I made the post, 1) to poke fun at myself and 2) to recognize the fact that most of the kind readers and commentors of our posts are, in fact, friends from Granger High. I was in no way poking fun at anyone but myself.

Troy and I have been reading friends' blogs together and reminiscing so I guess I just have high school on the brain.

Sorry if it didn't come out right!

Soooo High School

2008-03-13T09:44:00.000-07:00

I found this blog test over at Clementine. Apparently Troy & I write at a high school level which is only fitting considering that our comments section resembles a Granger High School reunion!

I am actually thrilled considering this thing can return an Elementary rating. Kudos to Troy who constantly responds to me yelling across the house "Ime bloging - come and help mah spell and write goood!" Troy has serious spelling skills which drives me nuts because I AM ALWAYS READING while he prefers not to read anything more lengthy than the captions in Sports Illustrated. I am so jealous of his skills!

Tagged

2008-03-11T22:41:00.000-07:00

Jane Rhodes has tagged us and I'm going first because a joint tag would require Troy and me (Troy is interrupting and trying to change this to 'Troy and I') to work together on a post and see, we are already arguing!

Ten years ago... 1998-I was working full time as an administrative assistant for AT&T Media, living in my parents' basement and going to school at the University of Utah. I was in a ridiculously dramatic, on again, off again relationship with some guy and Mindy Taylor convinced me to go out with one of Scott's friends from Granger who was reported to be both, and I quote, "hot" and "nice." Troy was indeed hot and nice and we went out twice before he left for spring training and I got back together with that other guy. It's a good thing Mindy is persistent because she and Scott were forced to set us up AGAIN in 2002. Obviously the second time stuck!

5 places I've visited...

Other than those parts of Canada & Mexico that are close to the border, my feet have remained firmly planted on U.S. soil. Some of my favorite trips/places...

Washington DC
Seattle
Chicago
Minneapolis (on account of that ginormous mall)
Oahu

There are so many great places I have yet to see (including NYC!) but the thought of traveling to foreign countries stresses me out. I have always admired those people I know that travel the world!

I enjoy...

Troy & Brady (I promise I'm not being cheesy. I really do not get to spend enough time with either of them)
Blogging, my new hobby
Reading, my lifelong hobby
Vegging on the couch watching Oprah, Grey's, Biggest Loser, HGTV, Discovery Health Channel, and totally random shows on MTV/VH1
Tennis - Troy taught me a few years ago
Skiing - the ONLY sport I can kick Troy's butt in
Running - although it's been YEARS

3 bad habits... Only three?

Eating junk & never exercising
Blog stalking. I am super embarrassed to admit that I like to 'browse' everybody's friends' links, blogs, etc. I am getting better at fessing up and leaving comments. I still don't have a feel for proper blog etiquette!
Troy says that I have to list not putting the lids on my contact cases (or anything else) at night. Personally, I think this is no biggie.

5 things you may not know about me...

Kajsa is a swedish name that my great aunt found in geneology
I was an alternate on the academic decathlon team in high school. Yes, alternate. That means I am a big enough nerd to be on the team but not smart enough to compete. To this day I get along spectacularly with engineers, techies, quants, etc. even though I only understand half of what they say.
I have big feet. Have you ever shopped for size 10 1/2? It doesn't exist so I slosh around in 11's or wince in pain every time I take a step.
I routinely read medical journals, although US Weekly is a close 2nd.
I am a morning person/early bird which Troy hates.

5 jobs I have had...

Piano accompanist in a ballet studio - jr. high
Bank teller (my cash ALWAYS has to face a certain way now) - college
Manager of Red's Frozen Yogurt - high school
Risk analyst (swap pricing and option volatility) on a trade floor - in H-town
Mommy - unfortunately this occurs outside of work but it's still my job!

I'm tired and you might be asleep if you made it through this list. I now tag Troy (that's two so you better do it!), Erin Johanson and Jenn Culley.

I Love This Gift!

2008-03-07T22:19:00.000-07:00

My super talented sister Alexis drew this portrait of Brady and sent it along with Grandma to Phoenix this week. I am constantly amazed at her talent which involves ALL mediums. She has given me several of her paintings over the years and I'm equally amazed by the time and effort she puts forth into everything she does. Ali, sorry for the yellowy tone (and for the lack of proper 'artist' vocabulary)- this is camera user error on my part and not reflective of your art! This is the picture she worked from and thankfully she removed the food from Brady's face.

I'm so proud of Ali. Her talents are endless and she was recently faced with the dilemma of whether to focus on art or music when she attends Utah State this fall. She received a 5 on her AP art exam as a junior and her perfect pitch gives her an advantage in AP music theory. Oh to have such talents. It just won't be the same when I build her a beautiful spreadsheet one day!

Seriously though, figuring out what to study in school can be brutal. However, I know any choice of Ali's will be met with success. Good luck, sis - you only have three more months of senior-itis ;-)

New Developments & Blogging Help

2008-03-03T12:50:00.000-07:00

I am in desperate need of some blogging/computers in general help. Does anyone know how to download videos from their camcorder (are they still called this or am I a total dinosaur?) to their computer? We bought the video thing in 2004 and it records to a miniature tape-sort-of device. It came with a cord that plugs in to our computer. However, our computer doesn't automatically recognize this as a storage device and/or explicitly tell me what to do from there.

I am dying to get some of our videos on youtube so I can show everyone that Brady is now walking. That's right, he is WALKING ON HIS OWN ALL OVER THE HOUSE! Thanks to Coach Farnsworth, Brady is even carrying a mini basketball around and dunking it in his little hoop! It's just not the same telling everyone about it. I want to show video proof!

More Signing Time & Sunny Days

2008-02-29T21:55:00.000-07:00

We recently moved a mirror onto the floor since gazing at himself is Brady's current #1 hobby. I always catch him signing to himself and, I'm not even kidding, saw him laugh and sign "mom" in his sleep the other night. I'm sure I was telling a HILARIOUS joke in his dreams ;-) In reality, he laughs when I bend over and groan so I'm sure that's what was going on in his head.

Signing "hungry"...This is the sign for "hat" which Brady also uses as the sign for "dad." Both signs are done on the head and I'm positive Brady uses them interchangeably because Troy ALWAYS wears a hat. Brady's face lights up at the sight of any hat and then he signs "hat/dad" and starts looking around the house for Troy. He is pretty much just calling Troy "hat" if you think about it. This one's got a sense of humor!

Brady's current signs:

hi/bye

food

hungry

mom

dad

hat

brush teeth

please

thank you

sorry

dog

car

airplane

sleep

ball

all done

brush hair

I think Brady's priorities in life are obvious by this list. He has all of the boy basics covered!

Kissy kissy!

Fun In The Sun

2008-02-23T21:40:00.000-07:00

Brady loves to peek at me through the window in his stroller cover. I'm not sure if you can tell what this is but I can't get enough of that little grin. We went to the park this morning after being sidelined for almost two weeks with a nasty virus making its way around Phoenix. Troy managed to stay healthy and took great care of me and Brady. He deserves a break so it was great timing that his friend Joseph came in town. He and Troy love to play tennis...

Brady's version...

We have been trying to teach Brady to drink from an open cup forever. Brady is NOT a fan yet will gladly "drink" tennis balls!?! This is Brady's favorite place to go - it was packed today!Happy weekend, Everybody!

Milestones

2008-02-19T13:47:00.000-07:00

Where oh where has my baby gone? I knew Brady might be mobile enough to do this but I had no idea he was tall enough and coordinated enough to pop up on his tip-toes and reach my stuff on the bathroom counter.

Despite the loss of some of my eye shadow it was quite a thrill (yeah, I don't get out much) to find this mess because it felt so normal. This all prompted Troy to start installing the baby-proofing stuff that we got as a gift when Brady was born and have waited so patiently to use. There were so many times we looked at that pile of little white plastic thingies and asked ourselves if we would ever need them. Yes we do!

Phoenix Anyone?

2008-02-13T12:30:00.000-07:00

My mom just called to schedule a visit in early March. Yippee! Brady loves visits from Grandma. She used to watch him three days a week when Troy and I were both working and Brady has been so attached to her ever since. He loves to listen to her voicemails on our answering machine and demands "more, more, more" in sign language. Troy and I also love Mom's visits because she always insists we take a few date nights while she is here and it's always fun to watch our visitors soak up the sun we sometimes take for granted.

Can you believe our weather forecast? Is this just plain cruel to all of you up north? Carolyn, did I tell you my little brother is on a Rochester-area mission? So far he has been in very rural areas (currently in Warsaw) so I don't get the impression he is near where you live.

Anyway, here's to sending some sunshine to Utah and NY! We will be wishing for your forecasts when our's approaches 120 this summer.

Coming Up For Air

2008-02-11T11:42:00.000-07:00

Remember that post about my rocking chair and how in love with it I am? I changed my mind. I have been in that damn chair, for the most part, since Saturday morning. Brady seized over and over in that chair until we were finally forced to break open our emergency pack of Valium. I won't go into the details of how you administer Valium to a toddler but it scared us to death to use it and it actually worked quickly and beautifully. We haven't had any seizures since Saturday morning, just a high fever that won't go away and one cranky little boy.

On a brighter note, the powers that be at work have assured me I can work from home whenever and as much as I want. I don't think I'm disciplined enough to make that work but it's a huge relief to know I have the option. Also, we ran to the grocery store this morning to give Brady some fresh air and find something he might actually eat. This is who we saw...

We saw him but I didn't dare talk to him because A)I was too star struck and B)hello, I looked awful and there were cameras everywhere! I am actually quite obsessed with the Oprah show and its many experts. Troy loves to poke fun at me for this and has already pointed out how ridiculous it is that I didn't go talk to "my idol."

There is one other thing that has made Troy and I so very happy lately and it is this clip. Apparently the whole world has seen this video but us. We have been speaking in bad British accents now for days.

I know it seems like all we blog about is seizures but we're just in the midst of one of those clusters. We can't seem to think about or get much else done but we know it will pass. We will get this medication thing figured out and our lives will start to feel normal again. Thank you, everyone, for your kind comments, thoughts and prayers. It boosts our spirits more than you know.

Trileptal

2008-02-08T20:10:00.000-07:00

This has been a difficult week for us. We decided to place Brady on seizure medications as his seizures continued to increase in frequency and duration. We had discussed our options with a couple of different neurologists over the past six months and finally decided that it was time. We weighed our options with a couple of different medications (all carried side effects that can be frightening) and finally decided on Trileptal. Anyone who has gone through the process of diagnosing seizures will vouch that the process is both difficult and scary. First of all there are many types of seizures and it is not easy to identify the specific type. Brady has been through three different EEG procedures in the past year (of course he didn't have any seizures while hooked up to the machine). One of the EEG's was actually a 3 day study in the hospital (which tested all of our patience levels) that revealed no seizure activity. The picture on the "RSV SUX" post was actually taken in the Epilepsy Monitoring Unit at the hospital where we did the 3 day study. The bandage on his head was to keep Brady from pulling the wires off his head. We have tried to catch a couple of seizures on our own with the video camera but have been unsuccessful because it is too frightening to leave his side as the seizure is happening to get the camera and you don't think to grab it as you are racing in. We finally had to make an educated guess that Brady was suffering from Complex Partial Seizures which means that the seizure originates in either the right or left hemisphere of the brain causing the opposite side of the body to shake. Our best guess is that Brady's seizures are beginning on the left side of his brain (which is actually where he has an arachnoid cyst) because his eyes are usually shaking back and forth while looking up and to the left with the right side of his body doing most of the movements (usually a rythmic pumping motion). He will ocassionally bring his fist to his mouth while he is having the seizure and there is no shortage of slobber. His mouth and tongue make a smacking or clicking sound (almost as if he is tasting something) and usually end up blue in color as he struggles to breathe regularly through it all (this is the scariest part). His seizures usually last anywhere between 1-4 minutes (they seem much longer). He usually sleeps for a while immediately following the seizure...unless we call the EMT and they wake him to take his vitals and in this case he becomes EXTREMELY irritated (needless to say, we don't call very often anymore!)...
So far so good with the medicine and he is very good to take his "Medicine Candy". As Kajsa noted in an earlier post, some of our posts may seem like a little too much info but we are hoping that someone will be helped in some way shape or form by stumbling into our blog. We have learned so much from others and hope we can do the same for someone else.
The one thing we truly regret through this whole process is not buying security cameras for the house earlier in the process as we witnessed Brady having a seizure in his sleep the first day we had the camera monitors set up (if only we would have had a recorder set up at the time). All but one of Brady's seizures have been during either a nap or while sleeping at night. We realized that we don't know how many seizures he has had in his bed by himself without our knowing. This left a sick feeling in our stomachs knowing that Brady has been alone at times having seizures. Second guessing yourself is not a fun activity and we are getting way too good at it. You will find much better descriptions of seizures and medications than I gave at http://www.epilepsy.com/

(This picture was actually taken in Utah last spring...thought it may bring hope to everyone that the snow really does eventually stop!!)

All Done

2008-02-07T10:42:00.000-07:00

Brady has been learning sign language and is up to about 20 signs. He periodically surprises me with new signs he learns with Dad while I am at work. He recently learned "mama" and often signs "mama" when I'm not home. While I don't love the fact that he is missing me while I'm at work (ooooh, the guilt!) I love that he is better able to communicate with us.
I haven't seen Brady for a few days due to working some long hours lately. When I got home last night I picked him up and proceeded to kiss, kiss, kiss on his cheeks. He took one look at me and signed "all done." He then showed me his sign for "Mom" and "Signing Time" and pointed to the TV.
Translation: "Bleh... stop kissing me already, Mom! Oh, and turn on my show."
He is growing up so fast! Thank goodness he now has a way to tell me.
Here he is signing "all done taking pictures" as he watches his favorite DVD...

And another picture because this chair and this boy make me so happy...

I got this La-Z-Boy for Christmas. It rocks while reclining and has already seen me through many sleepless nights with Brady. He goes through periods when his body twitches and jerks which wakes him up every few minutes. It helps if Troy sleeps with him and can put a little bit of pressure on Brady's arms or legs. Until we got the chair I couldn't sleep with Brady and Troy has had to shoulder this burden alone. Now I put Brady's head on the fluffy arm rest and during those nights when his little body just can't calm down he sleeps on me while I hug his arms and legs. I can sleep so much better knowing there is no risk of rolling over onto him and the fact that he can't kick me all night long in this position. Hands down, the best Christmas present ever!

Soooooo Not Going

2008-01-31T09:41:00.000-07:00

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

2008-01-29T22:59:00.000-07:00

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

2008-01-25T10:24:00.000-07:00

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

2008-01-14T10:15:00.000-07:00

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

2008-01-09T13:45:00.000-07:00

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:

Sleep for one hour
Scream for ten minutes or until Mom/Dad has rocked me sufficiently
If feeling nice, take three sips of juice
If medicine is administered, scream for an additional ten minute interval
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
Officially pass out as long as someone is sleeping under or next to me and the humidifier is blowing directly in my face
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

2007-11-09T13:00:00.000-07:00

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

2007-03-14T12:19:00.000-07:00

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

2006-12-18T20:36:00.000-07:00

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

2006-12-05T08:26:00.000-07:00

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

2006-11-14T20:33:00.000-07:00

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

2006-11-03T07:36:00.000-07:00

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.