Happy Memorial Day weekend, everyone!  I have shared a lot of pictures and videos on facebook, but haven't sat down to put words to our experience so far.

The schedule of it all wiped us out last week.  By the time we finished our last afternoon dive, there was just enough time to get back to room, eat and get Lilly in bed by 7:30 or 8:00.  To tell you the truth, I've been in bed not too long after her.

Of course the question everyone has is, "Have you noticed anything?"  Yes, I have noticed things.  They are hard to put into words but I will try.  Lilly just seems so much more "with it".  Her eye contact has improved and she is interacting with me more. Just this week, we were in the chamber and I guess I wasn't giving her the attention she wanted.  So she grabbed my face, turned it to her, and said, "Momma."  Cracked me up!

I'll share a video of her singing with me.  This seems to show her adorable personality that is emerging

I also have notice that Lilly is following directions better.  When asked to lay down to change her pants, she complies!

Lilly's walking is getting better and better!  I notice her using the walking more now.  Crawling has always been her main mode of travel but I have caught her a couple times walking into the bathroom to find me when I KNOW she was on the floor when I left the room.

Madison is a really great city with so much to see and do!  We've been to the zoo and made many trips to the University(by accident) and visited many beautiful parks and lakes.  Everything is so eclectic and artsy! There are bike paths on every street and walking is a favored form of transportation. State Street is so cool! Street is lined with shops and restaurants and the street is blocked from traffic, so it is a very relaxed feel. I've learned who "Bucky the Badger" is and to "Jump Around".  I will for sure be returning home with some UW souvenirs!

Had an exciting day yesterday.  Lilly and I drove 2 1/2 hours to Chicago for the Autism One conference.  WOW! If you have a child living with autism, you HAVE to make it there! So, so much information and we were only there for one day! I now have several plans forming in the back of my head for Lilly.  When I told Craig I had found a new therapy for Lilly, I could just imagine the eye rolling that was occurring on the other end!

Well, we have two more weeks here in Madison.  We appreciate all your prayers.  God is so faithful and I am blessed each day with the lessons He teaches me through Lilly.  Happy Memorial Day!!

Start of the 100%

     Today is Thursday and this morning Lilly started using 100% oxygen in the chamber.  Because of the seizure she had about 3 weeks ago, the technicians at the center wanted to start her out slow. We have been in the chamber breathing pressurized air. There are a lot of studies that support this method as well.  This has let her brain get used to the pressure and now we are introducing the concentrated oxygen.  

     She did great adjusting to wearing the hood!

    


      Therapy is coming along.  In the last 6-9 months as Lilly gained mobility, she began to display some independence, i.e. behavior issues.  An example would be the limp noodle trick when she doesn't want to stop an activity of get out of the car.  Another would be trying to sit down in middle of the parking lot because she doesn't want to walk.  You know, the typical stuff!  So the first couple of days here, Lilly has given her new therapists a run for their money. I have to say yesterday and today were much, much better.
   



 She starts her day out with hot packs, followed up with massage and joint compressions to wake-up her muscles.  I know, rough, huh?

 

Then she does some pulley/weight work before moving on to suit therapy.  She gets her gear on and she's off! The suit puts the body into proper alignment, gives body awareness, and provides some resistance for increased strength. She is in therapy for 3 hours.

We have a quick lunch break and then back to the hyperbaric center for another dive. Each dive takes about 1 hour and 15 minutes.

Lilly and I are really enjoying our time with the Kempers.  Harry and Lilly are so cute together!  He is great and treats Lilly like any other 6 year old.  I told Liz that spending so much time with Harry is great therapy for Lilly! This morning in the car, Harry was poking his pirate sword at the "other pirates" saying, "Back! Back!" So Lilly starts saying, "Back!"  It was perfect!! 

This afternoon, we went exploring in Madison.  Found a couple parks off the lake and an area that had boat rentals.  I'll leave you with a picture of what we found.....Good night!

Lilly's New Adventure

               With all the excitement the last couple of weeks, I haven’t had time to update everyone sooner.  Lilly and I arrived in Madison, Wisconsin, Saturday for four weeks of hyperbaric oxygen therapy and intensive physical therapy.  I want to say “thank you” to all who purchased pumpkin rolls or made donations to fundraisers or prayed for Lilly and our family.  It is because of all of your efforts, we are able to make the trip here.  BIG thank you to God for weaving all the details together in the midst of the craziness of our lives.  When asked how I do it, it is only through Him! 

               Just to update on what has been going on with the Ecklunds: I started at OTC in January to pursue an Associate’s degree in Allied Health.  Hopefully, I will be accepted into the Physical Therapy Assistant program in January 2013.  Applications are submitted in the fall.  In the meantime, I have been busy working on my prerequisites this semester, specifically Anatomy and Physiology, and English 101.  It was a huge adjustment for everyone in the family, to say the least!  Lilly was still able to attend her outpatient therapies thanks to my mom, Craig’s dad, and Lilly’s AMAZING aid, Bitsy or “Bibby” as Lilly likes to call her.  I had to push my finals up a week for the trip, so finals were last week and after my last one on Friday, I started packing! Lol

               Craig and Gunnar are home sharing in some “guy” time.  As always, our family makes every effort to accommodate Gunnar because of Craig’s erratic work schedule, so he is spending lots of time with his grandparents. Unfortunately, Craig has the boring, no fun task of going to work, while Gunnar finishes up his last week of school.  Then it is summer, summer time! Craig has promised to take a week vacation after we return, so we are looking forward to that. 

               I have to brag on Gunnar for a moment.  He has grown into such a strong young man and he proved to me this last week how selfless he is.  I was trying to spend some one-on-one time with him each night. Next to last night he said to me, “Mom, you don’t have to buy me ice cream or take me somewhere.  And you don’t have to be sad that I will be left at home without you. I will be just fine.  You need to go and take sissy because that is what’s best for her.  I will be just fine.” He is hitting those preteen years, and sometimes it’s all about “me”, but deep down he is such a compassionate, loving boy.  Side note: we got him a phone with texting and he and I text all day now that I am here.  It is so cool!

               Many of you are probably wondering, why WI? There is a beautiful center here, WisconsinIntegrative Hyperbaric Center, called A Place of Grace. A mother, whose daughter’s life has been saved due to hbot and bio medical treatments, started this center and has another center in California.  Shannon and her daughter, Grace, are so hospitable and the staff here is great! Their center was offering a grant for hbot that we just couldn’t pass up! Isn’t it always about the money?!?!

               Lilly will also be attending intensive therapy at Communication Innovations in between her dives. It will be 3 hours for 4 weeks. It is a lot like the intensives we’ve done in the past and we are excited to watch her gain some new skills! 

               We are not traveling alone this time! Our friends, Liz and Harry Kemper, are here as well doing hbot and some intensive occupational therapy at Communication Innovations.  Harry will be the ADORABLE, freckle-faced, little boy in some of the pictures with Lilly.  Oh, that boy is precious! Maybe I can catch some stuff on video for you because he is priceless!

               I will be trying to update the blog a couple times a week. We have long days and short evenings. Lilly is exhausted and bedtime is early.  We are in one open room, so lights out for me too when she goes down.  Be sure and check back on occasion and if you are on facebook, be sure and “like” Lilly’spage. I will be tagging pictures, videos and blog updates there as well as my facebook wall. 

               Thank you again for all your prayers and support! Miss you all back home!

My first plane ride. I loved it!!

"If I smile real sweet, will I still get in trouble?"

Diving buddies: Harry and Lilly

Inside chamber

2011 Lil' Miss Pumpkin Rolls Are HERE!!!

If you are from the local area, click here to place your order:

ORDER FORM

For those outside the local area and would like to make a donation since I do not have a shipping department, click the button below:

Hi everyone!! Looks like it has been 5 months since I have blogged....shame, shame you know my name! So, so much has been happening and I am excited to fill you all in but first....It is PUMPKIN ROLL TIME!!

We are taking orders now for Thanksgiving and Christmas but don't wait, I can only bake so many! And no, I'm sorry, but I still can't ship rolls. Cream cheese doesn't do great things for ya when it's been in the mail a couple of days. But I have great news! This year our fundraiser is being sponsored by Miracles Child, a fund of The West TN Healthcare Foundation, and if you would still like to contribute to the fundraiser you can just click the "DONATE" button above. No worries, all contributions will go to Lilly!

Now I need to get back to the kitchen but I promise to post some exciting videos for you real soon. So check back here often!

Fine Tuning

We've started our last week of intensive here in Sikeston. It seems it's all about tweaking it! Lilly has now realized she can walk and is getting more confidence every day. I think it was yesterday that she walked 8 ft! So now that she's walking, we need to make sure all the supports are there to help her be successful.

Brandy, Lilly's therapist, has been measuring and measuring trying to see just why the alignment in Lilly's right leg is not normal. We have been "taping" it and that has helped some. I will be learning how to tape before going home. This issue may require us to make an appointment with an orthopedic doctor to have it monitored. We have also been trying a brace on that leg. It keeps the femur and tibia, or your thigh and shin, in alignment.

We tried on many pairs of shoes today too. Looks like we will be needing a more heavy duty shoe than the one we have. Luckily it's like 1/3rd the cost of the shoes we own now! In the video below she has those shoes on and is not wearing the AFO that has helped her last week. She looks really great in them!

Today we went to St. Louis for the appointment with the optometrist. Well, we have a script for the glasses! Can't wait to get home and find some adorable frames for her! Hopefully with the prism lenses, it will help with balance and overall better engagement with objects and people.

Our time is about up. Ready to go home! Started packing earlier tonight. Lilly and I miss everyone back home so much. It's tough being away but this place is really amazing and I'm so thankful to all of you that have made this trip possible! Everyone that purchased a pumpkin roll, you helped get us here! Everyone that helped bake pumpkin rolls, you got us here! And now our big girl is walking! Thank you to my family who helps with Gunnar while I'm gone. I couldn't leave him behind if I didn't know he would be spoiled rotten by the time we got home! Thank you for all the prayers and encouragement! God has been so good to us. He has given us this precious gift. Lilly just lights up our hearts and gives us sooo much more than we could ever give her!

I just found this video from Feb 2010. It was the last time we were in Sikeston. She learned to crawl but this is what her walking looked like. We've come a long way in a year!



This is from today, May 2011:

Yeah Week 2!

Wow! This week has started out with a bang! And a blast! Last night, they blasted a hole in a levee 30 min from here. Sound like nothing I've ever heard and it shook the chandelier in the dining room. That was some dynamite! Please pray for the people in this area as their lives are turned upside down. The one constant they have is the Lord. Father, let them feel your presence.

Monday, Lilly took couple steps. Today, Tuesday, she took 6! She can do it...it's just convincing her. We tried a new brace that helps her just enough to give her some confidence. That's the difference between the two days. One of the many reasons we love this center...they have so much for us to "try before you buy"!

Here's the two videos. Sorry they are sideways. Still trying to figure out my phone.

Sikeston Again!

Hey everyone! Long time in between posts again. Life has been crazy busy!! We have so many exciting things going on, I don’t even know where to start….

First off, Lilly and I are in Sikeston, MO, at the Kenny Rogers Children’s Center. We got here Sunday and have almost completed our first week of intensive therapy. Lilly is doing great! Since our last trip here in Feb. 2010, Lilly has gained so many new skills. She is crawling everywhere, cruising on all surfaces and doing some independent standing. So our focus this session is walking independently. Brandy, the therapist, is trying to work on some tightness and break some bad habits Lilly has learned.

Something Brandy also realized quickly was that Lilly seems to have an issue with depth perception and even some midline shift. In a nut shell it means she may not be seeing things as you or I do. They may just be off to the left or she may not be able to see how far the floor is from her bottom. After wearing some prism glasses for a couple days, they feel this may be the case. The glasses just shift everything back to where it should be. We have an appointment in St. Louis in 2 weeks to see a specialist who will evaluate her and look into getting some glasses and/or therapy. It’s funny….she seems to really see more and when she looks at me….she REALLY looks at me. Not sure how to describe it.

The videos at the bottom are some fun activities Lilly is doing. Shhhh….don’t tell her she’s really working!

I have some exciting things going on with me as well. Recently I have become a part of the team at Family Network TV! We are a website that produces programming for the special needs community. I am involved in many different aspects of the site and also sales and advertising. I just got home about a week ago from Los Angeles after attending an Abilities Expo. We travel to all the expos across the states, interviewing attendees and exhibitors. I had the pleasure of interviewing Henry Winkler in LA and he is such a nice man! He gave us a “heyyyyy”! After we get back from Sikeston, I will be going to NY for the next expo.

On Monday nights I am co hosting an online radio show with 3 other moms of additional needs children. It’s called Mom Squad. We attack the issues that all of us deal with. The ones we love to talk about and the ones that are more difficult. It is a call in show and I have really enjoyed connecting with other mothers out there. And my 3 new friends are really great! Check us out at 7cst on Family Network Radio. The shows are also archived.

Gunnar is about to finish 4th grade and I can’t believe it! He is such an amazing boy! He’s so brave and unselfish to let me leave like this. He’s at the age where we are developing our friendship and I enjoy our time alone when we can talk. I drag him along to the store just so we can have some time. He hates it in the beginning but on the way home he thanks me for making him come along! Just last night I was telling him I had had a sad day because I missed him and his dad so much. He quickly told me I was much stronger than that and I’d be ok. I really miss him a lot this trip!

Well, here’s some videos from this week. Enjoy!******week 1. We just started wk 2. It has taken me this long to get it on here and for the rain to stop so I would want to get out to wifi.******

Swimming

We figured swimming would be one of the many activities we could enjoy as a family so Lilly has started taking lessons. Enjoy the video!

Unspoken Kinship

This past weekend, we visited our grandparents at the independent living community where they reside. As usual we were greeted by hellos and sweet smiles by the residents as we came through the lobby. Lilly always receives a lot of attention. Most people know us but sometimes you meet the new person confused as to why Lilly doesn’t say hi in response to them. It takes a couple of visits before they realize Lilly is “different”.

Saturday, they were having a Valentines dance and the dining hall was crowded. After spying grandma and grandpa, we made our way across the room. After being seated a few minutes, I noticed a new gentleman whispering in my mom’s ear. Then they both turned, smiling sweetly at Lilly.

After introducing himself he said he had been watching us. He knew something was wrong with Lilly and wanted to share something. This new friend told me a story of how his middle son was born with clubbed feet. Now this man is 91 years old. You would think things have changed, right? Maybe the medical technology but not the parent’s heart. He shared about the therapies, stretching and traveling they had to do for their son. Sound familiar? He wisely encouraged me to learn from our therapists because really we were her therapists at home.

Then he shared his heart. Never give up and never loose hope. He told me all about the amazing business man his son had become and the grandkids that followed. Then as tears welled up in his eyes, we talked about the struggles with guilt as parents. Guilt that one child is getting all the attention. Guilt over the time and money spent. And just like so many of us, his heart beamed as he spoke of the day his other children said they would have it no other way!

I felt so close to this stranger. That’s how I feel with any new friend that lives our life. Our children may have different diagnosis or we may be older or younger but I am just awe struck at the common threads that weave us all together. I’m so thankful for my new friends and family. We are truly never alone!

Our Rolls are Famous!!

Watch this clip from Exceptional Family TV spot lighting our rolls and fund raising idea!

Does This Still Happen To You?

Some of the Lleaches

For those of you new to our blog, I am the mom of 2 beautiful children, Gunnar is 9 and Lilly is 4. Lilly has a duplication on her 2nd chromosome. She has low muscle tone. Does not walk but just learned to crawl. She is non verbal but has her own way of communicating! We are blessed to have no major health problems. She is a joy!

Enjoying My Gift

WOW! Last weekend we had the priviledge to meet with some Exceptional Families in Tennessee. Thank you Exceptional Family TV for inviting us to be a part of this special thing you have going! It was so natural and easy that it felt like we were meeting up with old friends. I think there is a special bond like that with special needs families.

I walked away with a priceless gift that weekend. I feel like I got my little girl back. I know that sounds strange but let me explain. I have always had this drive when it came to therapy with Lilly. Do you know that she was getting 6hrs a week of out patient therapy, 3hrs at school and a work out at home everyday? Plus the intensives we did twice a year. When I got her diagnosis I researched EVERYTHING....found all the different therapies out there and proceeded to get her into all of them! I was in a race...a sprint. I just kept thinking, "We will work our tails off and at some point during this she will be all better!" I was trying to fix her, she was my little project, my JOB. And I wanted to do my job well!

Somewhere lines got blurred. I forgot Lilly was my daughter, my child, my gift from God. It was that weekend in TN where moms and dads shared so honestly about letting their kids be kids, that I realized I have not truely enjoyed Lilly's childhood. The big lightbulb moment came when eftv asked me for some home videos of Lilly and our family. All I could find were videos of her in therapy! OMGosh...seriously?!?!

So when we got back home to Missouri, I talked with her therapists and we have agreed on a new schedule! Out patient has been cut in half and I can't explain to you the sense of relief I feel. I am so ready to be Lilly's mommy! Maybe her therapist occasionally but that is not my first title! I am ready to enjoy my daughter, my gift!