Thursday, June 28, 2012

The Wiggles

Anyone who knows Jake or who has been following his story knows that he LOVES the Wiggles. His love began even before his accident. Around the time he turned 1, he was ready for something besides those Baby Einstein DVD's, and my sister in law had given me her old Wiggles VHS collection of tapes. Yes, that was back when we had both a VCR and a DVD player on top of the TV. I put in "Wiggle Time" one day when I needed to take a shower, and he was mesmerized.  I used to strap him into a booster seat on the floor, turn on the VCR and I had an instant 20 minutes. Our only issue was when they sang the song about the "5 little Ducks." When all the ducks were gone, and Mother Duck said "quack, quack, quack" but "no little ducks came back," Captain Feathersword would fake cry. His fake crying went on and on, and he would pretend to need a bucket to catch his tears. Captain Feathersword would even crack up during the song, but Jake took it very seriously. As soon as Captain Feathersword started crying, then he would lose it and cry too. He was only 12 months old, but the empathy that kid had. My sweet boy.

Jake was 15 months old and the Wiggles were definitely his favorite when he had his accident. We would play the Wiggles for him in the ICU. He was unconscious, but we hoped that the music would reach him. I don't know if it did, but we kept on playing them. Jake was sent from Vanderbilt to Children's Hospital of Atlanta Rehabilitation Hospital. Amazingly, one of the toys in their toy closet in the physical therapy room was a Wiggles guitar. This was the first toy post accident that Jake responded to and would reach for. I credit this guitar with helping him reach past midline and even turn his head and body from right to left toward the music. At the time, our Occupational Therapist told us that she thought Jake was blind. I remember vividly the day she took him into a dark room, and she shined a flashlight to see if he would follow the light. He didn't. We were still playing the Wiggles tapes, but from his hospital bed the TV seemed to far away. Our friend Shelley, whose own daughter had spent so much time in the hospital, sent us a portable DVD player. Suddenly, we could put a Wiggles DVD in and place it right next to him. Immediately, he started responding to it. He would calm down, relax and enjoy the music.

The Christmas after Jake's accident when we were home from Atlanta, Jake got the Wiggles Wiggly guitar and drum as presents. I had to order them from Australia, but I was getting that guitar. Four + years later it is still one of his favorite toys. Jake still watches the Wiggles almost daily, although he has some issues with Dorothy the dinosaur. We have almost every Wiggles DVD and Jake loves the old ones with the original yellow Wiggle Greg, and the newer ones with Sam as the yellow Wiggle.

I used to be on the Wiggles mailing list, and we took Jake to their concert back in 2008, but I changed my email last year, and I forgot to sign back up with the Wiggles. I was randomly checking their website recently (they now have an IPAD app that of course Jake LOVES), and discovered two things.  Greg is back, but only for this year as he, Murray (red Wiggle) and Jeff (purple Wiggle) are retiring. Anythony (blue Wiggle) is staying on, but they are doing one final celebration tour together, and they are coming to Nashville for one show on August 7th. OMG - we have to go. They are playing at the Ryman which is the coolest venue ever, and much better than when they were here in 2008 and played at the Municipal Auditorium (not cool). I went through ticket master, but the only 4 seats available were in the balcony. For those that don't know, there are really no bad seats at the Ryman, but with Jake's vision issues (he can see pretty well now, but doesn't attend well when things are far away) I didn't think this would work. I was so disappointed. I checked some of the ticket broker sites but floor seats were selling for $150 - $200 a piece. Really?

What's a Mom to do? Email the Wiggles of course. Here is what I wrote:

 Dear Wiggles, I am writing you to ask about your concert at the Ryman Auditorium in Nashville. I just recently learned that you are coming to Nashville. I have two boys that are HUGE Wiggles fans. Jake is 6 and has loved the Wiggles since he was 11 months old. He suffered a severe traumatic brain injury when he was 15 months old. He spent weeks in the hospital and has continued therapy to this day. He continues to make progress but still suffers many effects since he lost a lot of brain function. The Wiggles have gotten us through so many things and have probably been the one constant that Jake has loved both before and after his accident. Now his little brother (Emmett, age 2) loves the Wiggles since he is always watching them with his brother. All that to say, when I went to Ticketmaster to get tickets the only tickets available are in the balcony. Jake has cortical vision blindness due to his brain injury. He can see, but he has holes in his visual field, and he does not attend as well to things when they are far away. I wondered if you had access to any other tickets? Thank you so much for your time. We will forever be grateful to the Wiggles for how much they have meant to Jake. Elizabeth Doolittle

It has been a few weeks and I was starting to worry because I hadn't heard anything from them. Then, last night I got this email from the Wiggles Tour Manager:

Hi Elizabeth

Please find attached a voucher for 4 free tickets that include a meet and greet with the Wiggles in Nashville on 7th August. The meet and greet will happen prior to the 6.30pm show. You need to go to the box office 90 mins prior to register and find out more details on this fantastic opportunity.

We're counting down the days. Thank you Wiggles!
I haven't stopped smiling since I got this email. We're counting down the days. Thank you Wiggles!

Jake Christmas 2007

The Wiggles Concert 2008

Tuesday, June 26, 2012

6 Months and Counting.....

Has it really been over a month since I last wrote? Clearly we've been busy....growing! Last weight check was June 15th and Millie weighed 15 lbs and Ruby weighed 14 lbs 7 oz! We went to the NICU Neurodevelopmental Follow up Clinic for their 6 month check up. This is a screening clinic to make sure that the girls are developing the way that they should. We walked in the door and the Nurse Practitioner said, "well, someone's caught up!" While their growth has been amazing (Millie is in the 35th percentile as compared to typical 6 month olds and Ruby is in the 15th percentile), they still have some work to do with their development. Socially, they are right on track. Both girls are smiling, tracking well with their eyes, laughing etc. Physically they are a little behind (even compared to their adjusted age (3 1/2 months). They are holding their heads up pretty well, but their heads still lag some when you pull them up by their hands. They both will not put much weight on their legs at all. This is the biggest difference I see between the girls and how Jake and Emmett were as babies. At this point, I know both boys would bear weight on their legs and the girls will not. For this reason, the physical therapist that evaluated them put them at a two month old level of physical development. The physical therapist and the neurologist said that this was not a big deal, and that they should catch up with time. The neurologist said that she did not see any problems with tone which would indicate a neurological problem (like cerebral palsy). They gave me some exercises to do to encourage weight bearing. Part of me is not worried at all, but another part can't help but feel like here I am again doing physical therapy with my child. This is nothing compared to what we've been through with Jake, but just the fact that I am having to think about exercises everyday pulls at my heartstrings. Mostly though I am so thankful for their amazing development, and their smiles and giggles give me joy everyday. They also survived a recent bad cold with a lot of breathing treatments and nasal aspiration but NO HOSPITALIZATION!

The girls are on a great schedule now, and things have gotten a lot easier. The "breastaurant" is officially closed, which I have mixed feelings about. It was not a conscious decision so much as my body just quit producing much, and it was hard to pump as much as I needed to. I'm glad I made it 6 months, and it is a lot easier not to worry about pumping. I realized that with the exception of about two months between quitting breast feeding Emmett and getting pregnant with the twins, I have either been pregnant or breast feeding for the last three years. I think I deserve some new clothes (or at least some new bras!).

 Ruby and Millie try out the bumbo!

Jake did have a bad seizure three weeks ago. We had to call 911 again and go to Vandy. He was not totally out of it with this seizure, but his fingertips were turning blue and his breathing was shallow. We got the B team of paramedics unfortunately. They got to our house the fastest yet (17 minutes), but they were all on the older side, and when one of them tried to pick Jake up he started to drop him. I think he didn't realize how heavy he was, and Mamie (our nanny), La La and I all lunged for Jake, but he caught him at the last minute. I ran to get my stuff to go to the hospital, and as I was running out the door Mamie gave me Jake's diastat and said that she thought Jake was seizing again. We had given him one dose already. I got in the ambulance and told the paramedic that I thought he was seizing too, and he said, "yea, looks like it but there have been cut backs and we don't have Valium on the ambulance anymore." To give him credit he seemed frustrated by this and said this was one of the reasons he was going to retire soon. Thanks to Mamie's quick thinking (as usual), I was able to give Jake another dose of Diastat on route to the hospital. We ended up having to spend the night at Vandy because Jake had some weird apnea spells post seizure. He has never done this before, but he was very nauseated and I think he was holding his breath when he would get very nauseated and gag. He finally vomited and didn't have anymore spells. We have increased his Depakote, so he is now on the max dose. The main side effect I see is sleepiness. He seems a little slowed and out of it more than usual, and we have stopped giving him his middle of the night muscle relaxers, and he is sleeping to 6 am.

Lastly....who needs a swimming pool when you have a bucket! Emmett cools off in the oppressive summer heat we're having.