I will say time has been flying by lately. The twins continue to act and sound more like kids everyday. There is barely a trace of baby left and it breaks my heart. To see them running around and talking to each other is hilarious. Sometimes I will just stand around the corner to spy on them and wonder when they grew up. Wasn’t I just coaxing them to eat a bite of pureed peas or shouting in joy as one of them said “mama”? Now they say Mama all the time. Often with exasperation in their voice because I don’t respond to their demands fast enough.

What I am trying to say is they are growing up and catching up. Derby especially has been making great strides. He is talking more, running everywhere and being more social. People have said that Derby is tenacious. He never thinks “I cant do that”. You can see on his face that he is going to do that. When he learns something new he gets this sly smile on his face and looks so proud of himself. You cant help but cheer him on.

At his last clinical meeting I brought up the fact that Derby was outgrowing his DAFO (foot brace). I asked the orthopedist to write us a new perscription for one. The doctor watched Derby a little longer then said we could trial him off the brace for 3 months. He is walking so well that he might not need it, we just need to be sure he gets his heel down. We were so excited. Tadd and I had prepared ourselves for another downer meeting. Usually they bring up things Derby has learned and what he needs work on. At times it feels like they just keep talking about how low Derby scores on the assessment tests and worrying signs they see him display. This time was much better. One doctor commented that after seeing him last year she would have expected at this meeting he would have just learned to walk or speak in small sentences. She was amazed how clearly he spoke and the fact he was running around the room. Derby no longer keeps his left hand in a tight fist. He is actually using both arms to play drums, ride on cars and fight with his sister. The therapists write out goals for what they would like Derby to accomplish in the next 6 months. Like using a fork effectually, walking up the stairs unassisted, etc. His next meeting with the physical therapist he accomplished all of her goals. He ran up and down a hill. He went up and down the stairs alone not even holding a rail. These may not seem like big things but for our Derby it was huge. He is so independent. If you try and help him he will start all over again so he can do it himself. That can be frustrating at times when you’re trying to get out of the house and you’re already running late. They made him a new goal of riding a tricycle. If you would have told me last year they would be teaching him to ride a tricycle I would have thought it was a far away goal.

On a Strider bike. I swear he has a blue one he just wanted to try out Loen’s

From: Tadd
To: Dafo; Technical support; Customer Service
Subject:Our DAFO Experience

I just wanted to pass on our experience with a DAFO.
My twins were born 16 weeks early, at just 24 weeks and 2 days gestation weighing only 1 pound 6 ounces each.  They both were in the NICU for nearly 4 months and came home in February 2008.  We were pleased with our NICU outcome, especially considering some of the hurdles that they both overcame.  Fast forward for about 1 year – February 2009.  The twins adjusted age is now around 1 year.  My daughter starts to walk and is pretty much on pace with her adjusted age.  My son, on the other hand, is clearly not going to be walking in the near future.  We received a cerebral palsy diagnosis for him sometime in the middle of August, 2009 and the doctor prescribed him a DAFO.  At this point, I was hoping that he would be walking on his own by Christmas.  Then, he received his DAFO on Monday, August 31, 2009 and proceeded to amaze us by taking his first steps only 2 days later.  You can only imagine the elation that his mother and I shared that day. Here is a link to the video so that you can experience his first steps yourself: http://vimeo.com/6421447
There was no stopping him after that.  For a month or two later, he didn’t want to play, he only wanted to walk.
So, while it is a little bit late, I would like to thank you for helping my son. His mobility really means the world to him and also to us.
Thank you,
Tadd

From:DAFO.com
To:Tadd
Subject RE: Our DAFO Experience

Hi Tadd,
Greetings from Cascade Dafo!
Thank you so much for sharing your story about Derby and Loen, they are absolutely adorable. My three co-workers and I just watched the video clip of Derby’s first steps and we’re all in tears (of joy of course). The body language you and your wife display is all-telling. The moment Derby starts walking is so exciting!

We appreciate you taking time to send a message with the video – it means a lot to all of us here at Cascade Dafo. With your permission, we would like to share your video with the entire company, which is 225+ employees. This group of people includes many that have personally touched Derby’s brace. Roughly 400 braces leave our facility every day, so it’s inspiring to learn about the children who benefit from DAFOs.
Thank you again for your message. We look forward to hearing about Derby and Loen’s next steps.

Sincerely,
Annie (and all of us at Cascade Dafo)
Business Development Manager
Cascade Dafo, Inc.

From: Tadd
To: Annie
Subject: RE: Our DAFO Experience

Hi Annie,
Thanks for your response.  We obviously had tears of joy as well.  Of course you have our permission to share our video with all of your employees (or anybody else for that matter).

Tadd

From: Jenny
To: Tadd
Subject: RE: Our DAFO Experience

Hi Tadd,
My name is Jenny and I work with Annie here at Cascade Dafo. We were all so excited about your video that it sparked an idea to add a success story video section to our website. We feel it would be beneficial for others if we share the stories we receive. Your video in particular is very powerful and we love to kick off the new section with your story. Our idea is to post links to already existing videos that families post on the web (Vimeo, YouTube, etc) with their permission.

Would you feel comfortable with us posting a link to your video on our website, www.cascadedafo.com? There could potentially be a lot of traffic to the video so we completely understand if you’d prefer not to.

If you could please let me know your thoughts when you have a chance, that’d be great.

Thanks again for sharing, Tadd.
Sincerely
Jenny
Business Development Assistant
Cascade Dafo, Inc.

From: Tadd
To: Jenny
Subject: RE: Our DAFO Experience

Hi Jenny,
I think that a success story video area on your website is a great idea.

One of the major questions I had when the twins were born was what to expect in the future.  Our medical professionals wouldn’t really tell us, so I had to find the information myself.  While nobody’s situation is exactly the same, it was relieving for me to see that we in fact did have some hope.  That is one of the reasons that we have continued to maintain our website.  So, based on that, feel free to use our video as the first success link on your website.
Let me know when/if you put the new page up so that we can check it out
Tadd

Today the new Success Story link is up. (he was also to be in the spring newsletter but I haven’t seen that yet) I’m so proud of my little man. For all that he gets dealt with he rises to the challenge. From the Cerebral Palsy diagnosis to the recent revelation that he is dealing with microstrabismus (which causes him to see double ALL THE TIME), he doesn’t let it stop him. He just wants to play with his sister, cause havoc, create laughter and be my little boy. I love you Derby (and my Loen too)

• Loen: Weighs 19 pounds 3 1/2 ounces and is 31 1/2 inches long. Like the scene in Miracle Worker where Helen Keller makes the collation between water and the word, Loen is picking up a ton of new words and some we would rather she not say. After I made a comment to Tadd regarding a woman’s outfit which included the word ‘sexy’ we hear a tiny voice in the back of the car say “sexy, sexy, sexy”. Of course that would be the one word she would choose to repeat. We also like to say no, me and mine. Which is kind of funny in her tiny little voice. We bought a couple of potty chairs after Loen started signing ‘change’ when needed. She wasn’t keen on sitting on it without her diaper though she really likes sitting on it when were in the bathroom. Like it is her special chair to hang out and visit. She has also learned to take her diaper off. When I went to take out the trash yesterday I put the twins into the kiddie korral so they wouldnt get into trouble while I was outside. I come back to find a naked Loen saying ‘pee pee”. I thought she had peed on the toys but no she was just pointing out her anatomy.

Loen is all about talking on the phone. The other day she grabbed my insulin pump and started saying “Dada hi” Very cute until she tried to run off with the pump and it was attached to my posterior.

• Derby weighs 17 pounds 10 ounces and is 29 inches long. I swear I feel like he is never going to grow out of his current size. I am getting tired of them and ready to break into the drawer full of the next size up! He can be a very picky eater at times. My favorite is when he will eat something at a restaurant but when I make it at home he doesn’t want it. He prefers protein to fruits or veggies, so I can get him to eat tofu, chicken and soy nuggets but a lone green bean throws his world off its axis. Thanks to Michelle for the idea of giving him ‘Green Machine’ a Trader Joe’s smoothie that has spinach and broccoli mixed in with fruit. I tried it myself and it wasn’t too bad. It is hit or miss though, some days he loves it others he wont touch it. Derby is talking much more. While Loen is very vocal Derby says things when he is good and ready, there is no performing on cue with that little boy. You think he isn’t paying attention but when the Gaylords were visiting with their kids Derby cruised up to Michelle & baby Gwen and said “baby”. He has also added the words: bubble, Costco, pool, ball, baba, and Papa to his list. I’m sure I’m missing others but he definitely is talking more.

Now on to the stuff…

Derby officially got the Cerebral Palsy diagnosis 2 weeks ago. With upcoming treatments and therapy it would pave the way for insurance if it was changed from ‘Rule Out Cerebral Palsy’ to actual ‘Cerebal Palsy”. We had been told that constraint induced therapy might be a good idea for Derby (they would cast his good arm forcing him to use his weaker arm. Intense physical therapy everyday for 3 – 4 weeks has been found to bring amazing results) In typical Tadd style he went into research overdrive and looked into other cases, read published articles and found the University that initiated the trend (not to mention speaking with the therapists at UAB). After lots of questions and pushing to have him start therapy we were given an appointment to meet with the pediatric orthopedist to talk about having him casted. The doctor walks in and watched Derby crawl and cruise around the furniture and after a minute says he wants to have a brace (specifically a DAFO) put on Derby’s left leg (his weaker side). We were a little shocked as we thought we were just going to talk about his arm. We were told that when Derby cruises he is usually walks on the balls of his left foot. In turn it is causing tightness & shortening of the leg muscles, if we did not address the problem quickly Derby might need surgery to lengthen the muscles. Tadd said he wished they would prepare us beforehand about what they are going to say. Though that doesn’t work if we are meeting a doctor for the first time and he is telling us his initial assessment of Derby. As today was the first official day of intensive therapy he looked like the Bionic kid with a cast on his right arm and a brace on his left leg. Loen better watch out because that kid is going to have weapons at the ready!

Derby having a cast made to make the leg brace. He was so good while this was going on. A clear bowl kept him entertained the whole time!

Finished mold

Let’s move on to the casting of the arm. Seeing how getting the mold for his leg was such a breeze I thought we would sail through the arm casting. Lord was I wrong! I brought Loen and we were immediately brought back to a treatment room, which I thought was a good sign. The doctor came right in and quickly casted his arm. Again Derby was pretty good, except when he had to be still for about 5 minutes to let it dry and he was wiggling all over and trying to whack me in the head with the cast.  Then a tech came in to cut off the cast. The nice thing about this therapy is we will be able to remove the cast for bathing and swimming, hence the reason the cast would be cut into two pieces.  The twins DID NOT LIKE the cast cutter. The both started screaming at the tops of their lungs. The type of screaming that causes red splotchy marks all over their foreheads and nurses to come in to be sure there wasn’t an unscheduled amputation going on. I kinda laughed and asked if they could hear us. The RN looks at me and says they can hear you in the waiting room. Did I mention we were in the back of the office? He got one side cut and after a brief respite he had to cut the other side..cue tandem screaming. The ortho tech looked like he choose the short straw when it came to taking care of us. The RN was really sweet and talked to us while she prepped the cast. Since they cut it in two all the fluff that lines a cast started coming out so she wrapped both halves in a cast sock, then they ace wrapped the whole shebang to his arm. Can you say pain in the butt?

Waiting for the cast to dry

Finshed product (it is a behemoth!)

Trying to pick up toys with his mouth

So I hate to sound like I am bemoaning everything. I definitely was feeling down and depressed earlier but then I went to take Derby to therapy and a family was leaving and another family was coming in. The family leaving I recognized as the Strong family, their daughter has a rare terminal degenerative disease called SMA. The family coming in had an older daughter with another rare disease who needs a wheelchair and has limited verbal skills. Looking at these families was like a slap in the face, what they wouldn’t give to have the same ‘problems’ we are facing. While it is a bump in the road it is not a dead end. I felt so selfish and had to remind myself once again how lucky we are.

Derby has been our little stubborn pistol as of late. The kid wants to move, he wants to feed HIMSELF and he wants to do things HIS WAY. The feeding has really got me frustrated. Loen is a good 2 pounds and 2 inches taller than Derby. Loen will drink 9 ounces of milk but I have to fight Derby to take 5. Loen will eat just about anything, but Derby is on a crunchy diet. Goldfish, Kix, snap pea crisps and his favorite yogurt. He clamps his mouth shut when I try to feed him something healthy and will throw the food he doesn’t want off of his high chair. I’m pretty sure the stubborn streak does not come from me. He has been hovering in the 16 pound range since December. Sometimes we are 16.5 or 16.12 then 16.8. I gave away his 6-12 month clothes because I thought we had grown out of them, but alas I’ve had to go buy more pants since he crawls out of his 12-18 month size. It is frustrating and depressing and I don’t know what else to do.

Then we had our biannual CCS evaluation (California Children’s Services provide all of Derby’s therapy) last month. We see Derby do a little more everyday. Play harder, more independent, use his left hand. Therapy has done wonders for that little boy. While he may get frustrated and yell when they work with him, he will go home and use his new found skills to say climb up the ottoman. To be eligible for services a team of doctors go over his therapy notes, assess him and then decide if he still qualifies. Tadd was unable to make it for the first evaluation, but he came this time. Previous team meetings focused on all that he has accomplished while this one was about areas where he is lacking. Which is understandable, because it is a meeting of the things they want to work on and what their goals will be for the next 6 months. It is still hard to hear a laundry list of things your son is unable to do or doing incorrectly. They have been addressing his left sided weakness since the beginning of therapy. In the past few months he has unclenched his left fist to crawl,pull himself up to cruise and use it to help pick up heavy toys. I was feeling good with his progress , but then the CCS pediatrician blurts out “Ok we are going to call this CP with left sided hemiparesis” In laymen’s terms she diagnosed him with Cerebral Palsy resulting in left sided weakness. In the back of my mind I knew we were going to be dealing with limitations for awhile, they weren’t going to magically go away. Though when she said “CP” I had to swallow down my tears. I am fiercely protective of my children. I hate when people talk about things that can’t or won’t do, I want to bite their head off. I thought of how people would react to this diagnosis. Would they say “Ahh it makes sense since the kid has cerebral palsy” and just write him off? Would they think the worst, imagine a kid in a wheelchair, etc…? CP is such a broad spectrum diagnosis. I imagine it like saying your car was in a car accident which could range from a little fender bender to being totaled. Derby is not extreme but we don’t know where exactly he falls on the scale. Infants brains are amazing with their ability to rewire and deal with such obstacles. In a few years it may be unnoticeable, but we just have to wait and see. I thought back to all of the cranial ultrasounds that were negative. What could have caused this brain damage? In nursing school I remember an instructor saying most causes of CP are due to hypoxia. How many times has Derby been hypoxic? His agpars were 1,5, and 9, he was vented for 9 weeks, he hasn’t had the easiest time recovering from surgery, ughhh which was it? It is more prevalent in preemies, low birth weight babies and twins…..um check check check. Tadd asked the doctor not to label him with CP for now. It is inevitable but they said they would wait until he is 2.

So now all of our readers know. I should give fair warning I still don’t want to really talk about it. I should also warn I might give the evil eye if I hear any disparaging remarks about him, but hey, isn’t that a mom’s right?

He is our wonderful, sweet, stubborn, and amazingly tough little boy.