Christmas 2012

    
       This Christmas was busy. We started it off with a fun trip to Gatlinburg only to have to leave early because Mommy got the flu & Emerson got Bronchitis & probably the flu also! Thankfully, Beckett seems to have an amazing immune system & somehow avoided all our germs (along with Patrick)!

      So then Patrick took both boys to Pulaski for Christmas with his family & I stayed in bed for a few days :(  Watched a LOT of tv/movies. I felt so bad I couldn't even fall asleep, I think it was some type of super-flu. But anywho... so I missed seeing the boys opening presents & seeing all Patrick's side of the family. But I'm lucky that my husband is very sweet & took lots and lots of pictures for me. And my wonderful mom even risked walking right into my bedroom of death to bring me Demos' soup, medicine & more movies; cause that's what moms do and she's pretty awesome. (and also Thank You to my mom & Mike for helping me set up a train track & mini trampoline on Christmas Eve at great personal risk to themselves!)

      Thankfully I felt good enough Christmas morning to get out of bed & watch the boys open presents and go visit with my family. Emerson loved his presents & is still trying to take most of them with him to every nap, car ride, meal, etc. Beckett got clothes, books & a Nook which he really likes & we're excited to put lots of games on it for him. We asked everyone not to buy toys for Beckett this year because...
 
A. He doesn't really like toys & never plays with the ones we already have. And

B. We would prefer people take that toy money and donate it to his therapy fund so that it could be more useful to him.

       Eventually everyone agreed that was an ok idea. And we were blessed beyond belief by the time Christmas was over. Patrick's family had a surprise Money Tree for Beckett and so many people donated, it's overwhelming how supportive & generous they've been! We got several more donations from my family as well & we are making good progress toward our goal for his 2 week Physical Therapy trip! We go to St. Louis on January 14th to meet with Dr. Park and discuss whether or not he feels Beckett is a candidate for Rhizotomy (you can click here to learn about the surgery). If he does agree to do the surgery then we hope to get a firm number on how much the surgery plus the 2 weeks of therapy afterwards will cost. But we have faith that we will be able to cover everything & we aren't done fundraising yet!

      So THANK YOU, THANK YOU, THANK YOU to everyone who has donated their time, money, talent, or prayers to support Beckett! There are no words to express what it means to us but just know that we are so grateful for every dollar, card, thought, etc and we will keep everyone updated! Here's some pics from our Christmas....

Our cabin in the Smokies. It was really pretty but is now covered in flu germs

Checking out little brother's tractor

We got a trampoline!

Checking out the Budweiser mug

 

 We must get one of these tunnels for our house

I like this one...kinda looks like Granny Sue is choking him but it's still cute!

Thanksgiving

        I have been slacking on the blogging lately. We had a busy November with 4 Thanksgivings, but we have a lot to be thankful for. Especially for all the progress that Beckett's made this year. His speech has improved more and more. He loves to play with cell phones and he has always called them "moan" but just this past week he has corrected himself & has been clearly saying "phone". Lately he tells anyone & everyone (including strangers) "Bless You!" if he hears a sneeze, and he will say "Excuse You" if he burps (still working on that one!). I'm going to try to get a video of him talking & post it soon. But here's a cute pic at least :) 

        Beckett's fine motor skills are improving too & he recently met one of his goals which was for him to drink out of a sippy cup without handles. He has trouble using his left arm/hand so he used to just grab the handle with his right hand to drink. But he's finally figured out how to coordinate using both hands to hold the cup & turn it up to drink. He still needs a little help sometimes but he is getting really good at it.

        It's weird to read over Beckett's little victories and think about how trivial they would sound to someone with only typical children. But for us every single new thing he does is a big deal. We don't take one thing for granted because we know that there's no guarantee he'll continue to learn new things or that he'll continue to just progress along a developmental timeline like other kids do. The only thing his dr's say is that they are very pleased with how far he has come but that doesn't mean it will continue & that they have no idea what he'll be like in the future. So we clap & cheer for every bite he takes holding his own fork or sippy cup and we get overly excited when he says the right word for what he wants. We pray that he just keeps getting better & we give thanks because he has already surpassed the expectations of his dr's, and shown us that maybe we shouldn't put our faith in the "experts".

       We have another little blessing who has definitely helped Beckett & that is his little brother. They are becoming closer & I know that Emerson helps Beckett learn new things plus it gives him someone close to his own age to interact with & learn social skills. The video is them playing the keyboard in Granny Sue's basement over Thanksgiving. Beckett's little hand on Emerson's back just melts my heart...

Surgery :(

 

 

                 A few months ago the Dr that does Beckett's Botox shots told us she thought Beckett may be a candidate for surgery to get rid of all the muscle tightness in Beckett's right leg. This surgery would take the place of him having to get Botox injections in his legs every 3 months. It would be a permanent solution that works much better than Botox.

 

 

Sounds interesting. The catch?

 

 

This surgery (called Rhizotomy) is done by removing anywhere from 1-5 vertebrae from the spine & then cutting several of the abnormal nerves that run from the spinal cord to the legs. It's a big deal...huge. Not really what we wanted to hear but we also hate doing the botox injections, it's traumatic & they don't really make a huge difference in his right leg.

 

So we agreed to think about it. We researched & prayed & discussed it. And we decided to meet with a Neurosurgeon at Vandy to see what he thought & see if this surgery would even be a good option for Beckett.

 

So we met with the surgeon and his team of physical therapists & they agreed that Beckett should have the surgery.

 

We have done a lot of research (& so has Michelle, Beckett's Physical Therapist!) and it does seem like this is the best option for us. If the muscles in Beckett's right leg continue to stay so tight they can eventually pull his hip out of alignment &/or cause joint damage that would have to be surgically repaired anyway.

 

And even though operating on someone's spinal cord is always risky, there have been very few cases of paralysis or other bad outcomes. The worst side effect is weakness right after the surgery since the tone, or increased tightness, is finally gone. Because of the weakness it is required that patients go into intensive Physical Therapy after surgery to help strengthen the muscles & work on proper alignment & technique.

 

The intensive PT part could be done at EuroPeds (the therapy center in Michigan that we have been fundraising to send Beckett to). I've talked to the therapists there and they see lots of kids after Rhizotomy and have had good results.

 

So the other issue is that if we are going to go through with this surgery we want the best doctor who has done the most of these operations. And that is Dr Park in St. Louis. We are in the process of getting an appointment with him so he can evaluate Beckett & see if he could do the operation. If so, we would be traveling to St Louis for surgery & then to Michigan a little later for 2 weeks of therapy.

 

So needless to say we have had to adjust our fundraising goal! Hopefully (fingers crossed), insurance will pay for a majority of the surgery but we will still have to cover for what they don't pay plus taking time off work, hotel & travel, food, and then all of the therapy afterwards.

But we are lucky to have such great family & friends who have already been a huge help & have been brainstorming new fundraising ideas! So pray for us, that we will be able to put aside all the stress & worry about this operation and make an informed decision as to what would truly be best for Beckett. And if you are able you can donate by clicking on the donate box to the right of the screen or at the top.

 

You can read more about the surgery if you click the link above (Dr. Park...), their website is very good.

 

 

 

Patrick & I would also like to say a huge THANK YOU & BLESS YOU!!! to everyone who donated in memory of Patrick's uncle, Gerry Wayne Konig, last week. Gerry Wayne passed away last Wednesday and his amazing family asked that donations be made to Beckett's fund in lieu of flowers. I'm so glad that Gerry Wayne was able to come to Beckett's birthday party a few weeks ago, he was so sweet and we will all miss him.

 

 

 

Momma's boy moment...

 

But just for a moment because he is all about Daddy!

 

 

 

 

 

 

 



 

Beckett's Story

 

 

I know that most of the people who read this blog already know all about Beckett. But we have recently been fundraising for Beckett's Physical Therapy trip & we have been reaching out to lots of new people who may not have ever met Beckett or heard about his accident. So above this post is a heading, "Beckett's Story", where they can read about Beckett's history & understand how we got here.

 

Thank you to everyone who has donated their time & money for our family.



ps- I fixed the EuroPeds link, sorry for any confusion. While I'm sure it would be lovely we definitely are not raising money to go on a bicycle tour of Europe!



 

Working Hard

 

 

     Just wanted to share how great Beckett has been doing in therapy lately. He recently got some new braces & they are much, much better than his old ones and are really helping him to walk with his heels down. His right leg is our biggest problem since it turns inward so bad & the botox injections can't really do much for it. But hopefully we will be able to correct it as he grows & we're looking at some other options to try.

      He has also been doing better at entertaining himself at home. Typically if we are home he is crying for someone...usually his daddy... to hold him. His favorite words are "Up pease" and "Hold me". Here is a video of him trying to convince me to pick him up.

 

 

 

            And yes I picked him up as soon as I stopped taping.

 

     But lately he has done a lot better at playing in the floor by himself or with Emerson. He doesn't ever play with any toys but he has been crawling around & exploring more. He loves to open & close all the doors & cabinets. And he & Emerson have been wrestling a lot, they like to take turns trying to ride each other or knock each other over.

 

    His speech has really improved as well. Last night Patrick told him to say "Oh man mom" (after I announced that it was bed time) and Beckett repeated it just as clear as could be. He has corrected himself with saying "s" and "c" sounds; he says "Paci" now instead of "Padi" like he used to. He will also say "Cassie", one of his nurses at Special Kids, which has always been a difficult name for him. He will try to repeat pretty much anything you ask him to now, and usually does a pretty good job! Just working on those "L" sounds still!

     Today we went for a follow up visit with the eye dr. We have been patching Beckett's right eye for several hours a day for the past few months to try & strengthen his left eye. His dr today said that she feels like it's helping & that she noticed him using his left eye more than he has previously. So good news! Unfortunately, he still needs to wear the patch everyday but she cut it down to 3 hrs.

     We are really excited about all the progress he's been making lately. We're just praying that it continues and that we are able to provide him with as much help & therapy as possible! We've been working on lots of different fundraising ideas for his trip to EuroPeds for "Physical Therapy Camp", more details soon!!


And here's a pic I found today from his 1 yr photos, so sweet!!

 

 

 

 

 

 

 

 

 

 

 

 

 



Big Decisions

    Ok so we have decided to try & enroll Beckett in an intensive physical therapy program. The program is called EuroPeds & it's in Michigan and lasts 2 weeks with PT sessions M-F for 4-5 hours each day. Sort of like Physical Therapy Camp! Only he won't think it's fun...

    I have been researching different therapies for children with Cerebral Palsy and I found out about "Cage Therapy" & "Suit Therapy". These are big in Europe but have only recently become more mainstream in the US. The Cage or aka Spider Therapy is where a child works with lots of bungee cords to help hold them in proper alignment, kind of like having 4 or 5 PT's all holding different areas at once. Here's a pic...

 

   Suit Therapy is an actual suit that the child wears during therapy to isolate weak muscles & provide resistance to help strengthen the targeted muscles. The suits were originally designed for astronauts to wear while working out in zero gravity to keep their muscles strong. Here's a pic of suit therapy & cage therapy together...

 



www.europeds.com

 

    The program in Michigan is called EuroPeds because it was adapted from the program started in Europe. This is the only program in the U.S. with both the cage & the suit and it is the first hospital based intensive PT program in the U.S. which means it is actually part of a hospital - Doctor's Hospital of Michigan. That made us feel better to know that this is a legitimate program at a hospital & not just some privately owned, unlicensed therapy center!

    Now I'm sure some people think that this may be unnecessary because Beckett already gets Physical Therapy at Special Kids. And I absolutely love Special Kids & all his therapists there. He is making steady progress. But, he is currently only getting PT twice a week for an hour a session and that's not really that much. He is 3 now and he is getting too heavy to just carry around everywhere! So we look at this program at EuroPeds as a way to add to what he already gets with the hope that he will be able to strengthen his leg muscles & learn proper posture to hopefully help get him independent with his walker & the big goal of him walking on his own!

The bad news...
    Of course, it's super expensive :(   And, of course, insurance may or may not cover any of it. Now we are going to talk with our insurance & see if they will cover some of the cost but even if they do we will still have to cover suit therapy b/c it's still considered "experimental" & no insurance will cover that, plus travel expenses, hotel, etc. We have estimated the program at 7,000. Which right now, might as well be a Gajillion.

BUT we have Faith!

    We are going to sell t-shirts for the special kids race in March & part of that cost will go towards this, we are going to order bracelets to sell for $5, we hope to have a couple restaurants do a "Jon Beckett Night" and donate part of the proceeds, I am going to pick up more shifts at Kroger (gag), we are asking our family not to buy us gifts for Christmas this year & instead donate to Beckett's fund (so now you know I won't be giving you a present!), AND I finally figured out how to put a "Donate" button on this blog! So now any kind individual who would like to donate to this fund can simply click the button & make a safe & secure PayPal donation to the Team Beckett Fund!

   Now we realize that many people who read this have probably already donated money to Special Kids or to previous Beckett fundraisers and we really do hate to ask people AGAIN for their help. But we have decided that this program is right for Beckett and we can not raise this much money on our own so we have to just do what we feel is best for him & put our feelings aside. Just know that we are so incredibly thankful for each and every person who has supported us, prayed for us & donated for us, we are amazed everyday at how generous & kind & caring people have been toward our family over the past 2 and a half years and we are forever grateful.

     So stay tuned! I will keep updating on here & if anyone has any questions I'll be happy to help!

And here's a Beckett pic...

 

i know, i know, he shouldn't still have a paci...

 

 

Our first post!

 

I'm hoping this blog will help me keep everyone updated on our family & particularly Beckett's progress, without posting it all on facebook. Plus I think it's good to document all the ups & downs Beckett faces so that later we can look back and see how far we've come. And because my memory is terrible these days :(

 

Beckett did such a good job this afternoon walking in his walker. We practice in the road since there's less stuff for him to crash into (thankfully we live on a cul de sac). He hasn't really mastered maneuvering yet. I taped it so everyone could watch him. And for some reason he has started covering his ears with his hands alot as you can see in the video, I have no idea what that's about.

 

 

 

Beckett also started preschool at Rockvale Elem. this week. They have a preschool class for kids age 3 & 4, both typical and special needs kids. He only goes on Mon & Wed from 7:45-10:45 and the rest of those days & the rest of the week he is at Special Kids. His teacher said he had a great first day & he seems to like going. We are just praying that he does well with all these new changes in his schedule.