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

On Wednesday we went in to see Dr. Silverberg, the twins opthamologist. You may remember that he was featured during the Childrens Miracle Network telethon we were in. Our main concern during this visit was Derby’s vision. As always, when it comes to medical issues, he seems to be the one we worry about more. We had our IFSP (Individualized Family Service Plan) meeting last week to discuss what will happen with therapy once the twins turn 3. Loen will no longer be eligible as she has caught up to most of her peers. But Derby will need help for a while longer. One of the recurring concerns his therapists bring up is his vision. What does he see, what doesn’t he see and how is he processing these images. It is all a guessing game until he can tell us what is going on. Tadd and I were ready with a barrage of questions regarding our little man. What we weren’t ready for was that Derby’s eyes, anatomically speaking are fine, but his sister’s that have gotten progressively worse. She went from minor nearsightedness (common in babies) to a prescription of -7 & -9 in 2009. Anything over -6 is considered severely nearsighted.  On this visit they measured her to be -12 and -14. A huge jump. They tested her a couple of times to be sure. Without her glasses Loen is legally blind, sigh….. She is fine and will have to see the eye doctor every 6 months to be sure her vision is not worsening. We asked if there was a chance she could lose her vision. It is very rare but that would be the outcome if the retina was to detach.

I really shouldn’t get worked up but it is times like this that make we wonder what could we have done to prevent all this. If we would have hired movers when I was pregnant instead of doing it ourselves would they have gone to term? If I rested more? I know it is ridiculous to rehash this but it just comes to mind when yet another thing comes up. Again I feel bad because it is nothing life threatening just a bump in the road. But when I check on them in their cribs sleeping so soundly with their little pouty mouths hanging open, I want everything for them. I want the best. I fear for the day when some kid will make fun of their glasses or the way they walk. How am I going to protect them from everything yet let them live freely? This is motherhood huh?

On the upside she will be able to try out for Professor Trelawney in her high school production of Harry Potter.

On Friday we went to the park then to Trader Joe’s to pick a few things for dinner. They recently introduced kiddie karts at our branch and the twins were excited to use them. My mini shoppers were picking up necessities left and right (though the roast chicken had to go back. I don’t know how Loen got her hands on THAT). We are quite familiar with the sample station so we had to make a stop there. It was yummy peanut butter cookie day. Derby knew that cookies must be in his dominate hand. Waste not, want not…you know all that. So he is holding the cookie with his right hand and attempting to steer the cart with his left. I was excited because he was using his LEFT HAND to steer, a true testament to his wonderful therapists. Then his hand slips off the handle and he whacked his head on the cart. Commence screaming and food throwing then add in some shocked looks of fellow customers. He had a lovely bruise on his ear and head.

That night we had “the girls” and their parents over for dinner. You don’t know fun till you have 2 sets of toddler twins together! All the kids were in the living room watching Yo Gabba Gabba while we cleaned up. It was then that Derby fell off the couch and whacked his head (again) on the coffee table. The cut was just big and deep enough that I questioned taking him to E.D. He showed no signs of a concussion (unlike the LAST time he fell off the couch) but his head was oozing blood. After speaking to the on call Pediatrician we took him to the E.D. Turns out we were the 4th kid in a 2 hour period that had hit their head. The nurse asked if we were all together. “Yes, we were at a huge toddler rave and there was insane bed jumping…..”. Anyways Derby was a super trooper. One staple and he didn’t cry. In fact they stapled his head and it was loose so they removed it and re-stapled his head. He raised his eyebrows in concern but that was it. He is such a boy. The nurse called the staple “so cute”. Tadd said it was his first stitch, I had to remind him that Derby has had many stitches (from surgeries). I guess his first stitch from being dangerboy. Why do I have the feeling this wont be his last? Did I mention the E.D. doctor recognized Derby as the kid that puked in his cast over Thanksgiving weekend? Yeah, we have a rep like that….

Can you see the teeny tiny staple?

They wrapped a cotton ball with numbing agent on his head before the staple, which he enjoyed. When the doctor unwrapped his head he said “More hat, I want more hat”

Yesterday we took the twins to the park. Fauxbro John came along so we were 3 big people against 2 little ones, we were covered! Except for the fact a dog came out of no where and plowed Derby over. The dog was merely playful and the owner kept apologizing but I could see by Derby’s face he was traumatized. He doesn’t cry often and his bottom lip kept quivering. Usually he loves dogs, but he was quiet for awhile. Then he looks up at me and says “doggy owie”. My poor guy, he had a rough weekend. On the upside he was determined to climb this ladder arch thing at the park. He must have went up it like 10 times, you could tell he was so proud of himself.

Loen picking flowers

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)

You may wonder how did Derby got into the living room, since downstairs is usually a fortress of gates. The past 2 weeks both my mom and Tadd’s mom have been visiting so we pulled the gates down so they wouldn’t have to constantly hurdle them as we do (not to mention my mom is like 5′ 2″ and Tadd’s mom has had a knee replacement not a good combo when it comes to scaling a 3′ gate). The twins have had an all access pass and making messes to prove it. Now that it is just me and the twins the gates are back. And with it a little piece of my sanity.

Quick recap: here we are 2 years ago. Lord they were tiny!

The night before Loen was running a temp of 102. Then this morning they both were feverish and had runny noses. My kids know how to celebrate milestones! I don’t know if it was the fevers or what but they were super cuddly with each other and me this morning.

We were trying to start a tradition of recreating the day we brought them home. Since that is impossible we opted for whatever meal we had that first day. Loen = pizza = done. Derby = breakfast = well since it is tax season Tadd cant really skip out of work to go to breakfast. Then you throw into the mix the twins are sick. We made do with going to the bagel/donut place across from his office. Believe me the twins didn’t mind because they got a donut (yes it is looking like we load the twins up with sugar to celebrate. True, but it is a rare treat)

I realized later that Derby is checking out the college girl

As the day wore on they were being grouchy, yet still had lots of energy. I moved the art table that Oma handed down to us into the kid area. I busted out with all of the stuff we never do in the house: crayons, stickers and play doh. That kept them busy for about 10 minutes.

Derby was more excited that I gave him a knife rather than play with the dough

Loen continued to play while Derby crawled through the table

Then everything changed. Derby started crying and his fever spiked to 104 F. He just wanted to lay on my lap. After he got motrin he tried to climb back into his crib and was crying “nigh-night”. It was very pathetic. He took 3 naps and was my sad little guy. Loen thought Derby was getting extra attention so whenever I was trying to rock him she would climb on top of us and laugh. I could see why Derby wanted the sanctity of his crib.

]]> http://thetadpoles.com/2010/02/17/smooth-sailing/feed/ 1 http://thetadpoles.com/2009/09/03/because-were-in-the-21st-century/ http://thetadpoles.com/2009/09/03/because-were-in-the-21st-century/#comments Thu, 03 Sep 2009 21:43:17 +0000 Hava http://thetadpoles.com/?p=1062 You have to have video, audio, photo proof of every cough, smile, step. Such is the fate of our twins.

Video in HD on Vimeo set to Nancy Sinatra’s “These boots are made for walkin”.

Derby walks from The Tadpoles on Vimeo.

YouTube had some issues with the Nancy Sinatra song so here is the video in low quality (to play on iPhones) set to Roger Miller’s “Walkin’ in the Sunshine.”

• 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.

After she lopped off a hunk of hair in the front she turns to me and asks “Is that ok?”. What if it wasn’t?! Do they do baby hair extensions? Super glue it back on? I took a deep breath and said fine. I’m going to call it his summer hairdo. It is cute, just shocking to see my little boy shorn….

Notice the little holes around the tip

UPDATE: We’re back in business. After some swearing under my breath about my lack of thimble I was able to sew on new binkers to the WubbaNubs. I would post a picture but Derby wont let them out of his sight