Wow! Really? September 2012 since an update? I guess with the invention of Facebook, people stay connected through social media these days. I don't feel like I haven't shared Lilly for a year and a half! Let's see if I can bring everyone up to speed with life in the Ecklund house.

 Gunnar started Junior High this year as a 7th grader. Amazing how fast time slips away from you! He is now taller than me and will be gaining on his dad once the hormones kick in, I'm sure. He has turned into quite the comedian and enjoys that role. He doesn't think we are completely stupid yet(that's why I don't think the hormones have kicked in!) and still enjoys hanging with his parents. He has a growing interest in all things military, so prayers for this momma can start now. This past summer, Gunnar went to his first church camp(kicking and screaming), loved it and is now active in the youth group at our church. Pretty cool when you can have conversations about Jesus with your 13 year old! They give you a whole new perspective. Needless to say, we are pretty proud of the young man he is growing into!

Craig is a manager at Arby's, but now at the Nixa location. He is coming up on his 4 year anniversary. Craig is hoping to find another job outside the day to day restaurant setting so he can have a more structured schedule for our family. He has recently given up one of his days off to take Lilly to out patient therapy while I am in school. They have really enjoyed their time together in this setting and I appreciate him taking over for me!

In the fall, I was accepted into OTC's Physical Therapist Assistant program. We started in January and it has been a ride! I have never been so excited to go to school before. The first week, I think I cried everyday from the happiness of being around 24 other people who loved to talk about the same things I did. I will graduate in May 2015 with an associates degree and ready to work! I think I want to do pediatrics, but I am trying to keep an open mind as I go through my training. All I know is I am in awe of God's providence over our lives up to this point. There were times when I thought I wouldn't be able to pull through, but that is when God had the opportunity to shine. And SHINE BRIGHTLY, He did!

And now to the star of the show, Miss Lilly! She is just fantastic, as always! We are so blessed to have such a happy girl. She started 2nd grade this year and loves school. She has two wonderful teachers this year, Ms. Johnson and Ms. Mundinac. Ms. Johnson, her 2nd grade teacher, tries to include Lilly in as much as possible in her classroom. She encourages the other children to develop relationships with Lilly and the other children in the special education department. Ms. Mundinac, her special education teacher, is new this year. We love her and she loves her students! Ms. Mundinac has taught Lilly so much this year already and can always see her potential, even before we do. Lilly has learned a sign for "yes" and is working on using the Ipad for communication. She is constantly making progress in this area. They have Fun Friday where they bake and have Ms. Mundinac's therapy dog come in to play with the kids. She has even carved out time for some of Lilly's 2nd grade friends to spend one-on-one time with her. This has been such a wonderful thing to witness. Friendships are so important for this mommy to see fostered.

Lilly's health has been good this year for the most part, but she has started having seizures. For the last couple of years, Lilly has had only one seizure per year. This summer, they started coming about every three months, but from December to January, she has had 4. Of course we are concerned, but we are trusting in God's protection and plan for Lilly. She will be having an EEG next week and a MRI in a couple weeks to see if these tests show any changes from the previous ones. We appreciate your prayers. Seizures are such a scary thing to witness. No child, no adult should have to experience these episodes.

Oh!! I almost forgot to tell you about the most exciting part of 2013!!! Lilly was chosen as a Wish Kid and received a wish from Make-a-Wish! If you know Lilly, her wish is of no surprise. In July, they finished a 24 ft above ground pool, with deck, in our back yard. We can not express our gratitude enough! For the first time my kids go out to the back yard and play together! Throw a life jacket on Lilly and away she goes! She loves for Gunnar to swim under her and pick her up and throw her in the air. It is the best gift anyone could have ever given our family.

Speaking of gifts....we want to thank the Colo-Nesco National Honor Society for choosing Lilly as the recipient of their 2014 Dodgeball Tournament! This is a small community in Iowa and our best friends, The Sarvers, are from there. Their beautiful daughter, Kylie, contacted us and wanted to do this for Lilly. Kylie's little sister, Erica, was one of Lilly's first friends and her mom, Joanna, and I became fast friends while the girls were in PT and HBOT in Kansas City. Erica has since passed away, but she has left a huge legacy that her family carries on. The money from the tournament will purchase Lilly her very own Ipad and communication app, so she can continue to work on school stuff at home. This will make a lasting impact on Lilly's future! Can't thank you enough!
Well I think that wraps it up. Hopefully, most of you have kept up through Facebook. I will try to do better, but no guarantees! Take care and God bless!

PUMPKIN ROLLS ARE HERE!!!

Updates and the Chamber!

Adorable picture from our EEG

Update and a Little Something Extra

I'm going to try and post weekly progress Lilly is making since starting biomedical treatments. This is from last Friday. Sorry, couldn't remember my YouTube password! lol See ya next week!

And here is a little extra! This is after returning home from hbot in Wisconsin. She found a favorite word while there. lol

Hope for the Future

We have so much to be thankful for! Our trip to Wisconsin for hyperbaric oxygen therapy has opened up a whole new world for Lilly and our family. 

I mentioned in our last post that Lilly was gaining in her speech and receptive(what she understands we say) language. The progress has continued! Man, I hope I can convey this clearly because it's the little things that build to better communication. Here are some examples:

• Following simple directions. Ex: just this morning, I found Lilly sitting on her toy box. I was able to ask her to stand up and go to her bed so I could change her. She then started scooting her little bottom to the edge of the wooden toy box, stood up, and walked to her bed! She did none of this before hbot!
• Word approximation. Ex: Lilly now uses "c" sound to request her cup. We are working on putting "c" and "p" together. If she hears someone use a word that has the "c" sound she will make that noise. She is recognizing the sounds of words. 
• Social interaction. Ex: Lilly was always content to play on the floor of the living room or her room by herself. She might occasionally gaze at you or say momma to get your attention. Now, she wants to be where you are, in the same room, on your lap, etc. If we are all watching TV and she wants your attention, she will crawl/walk over to you and climb up into your lap. Literally, in your face pay attention to me! lol It has been so cool to see how this has changed relationships in our house. Now there are somethings that are happening that we are having to adjust to. If Craig is working in the evening and Bitsy, Lilly's aid, is not here, Miss Lilly wants to be smack dab in the middle of meal preparation! Oh boy! Another example of social interaction is her 100% consistency with saying "bye, bye" to everyone she meets. Waving hello is starting to emerge.

I'm sure I am forgetting something because it is amazing how quickly all this becomes the new norm and you push for more, and more. I do want to mention that all the above is being confirmed by teachers, paras, therapists, and people she hasn't seen since WI. Her physical therapist has commented on how she is following direction better and how that has impacted their sessions. She said we have made a believer out of her!(Referring to hbot) I have received countless comments and emails from her Special Education teacher since school has started. This is the same teacher that she had last year. I want to share a snippet of her last email. You don't know how much this means to hear stuff like this!

"I just want to share with you what I have been telling the paras and therapists. Lilly is doing things we couldn’t even hope for last year. For example, she will sit on her bottom on the floor for over 20 minutes while we do group time such as calendar, social skills and academic circle time. She will look over at the xylophone longingly but when we ask her to stay, she does! She watches our faces more and her receptive language is much stronger. YEAH Lilly!"

One of her IEP goals was to sit and attend for like 5 seconds, so this is a huge improvement! And this year, instead of riding to school on the bus in her medical stroller, we are climbing the stairs and sitting in the bus seat!

Now on to the "Hope for the Future" title. While in WI, the owner of the center told me about her daughter and how this doctor had helped her speech and cognition. Of course, we wanted to meet him!

This past Tuesday, Lilly and I returned from Irvine, California, and our first consultation with Dr. Dan Rossignol. Be sure to check out the links I have embedded and learn more about him and the biomedical treatments he uses in his practice. Dr. Rossignol is also the father of two boys with autism. After looking at an in depth case history of Lilly and asking some questions, he thinks Lilly may have a mitochondrial disorder and cerebral folate deficiency. He feels that a lot of Lilly's symptoms, low muscle tone, cognitive deficits, and non verbal, could be due to these two and not her chromosome abnormality. 

Mitochondria are the energy makers in our cells. They are in every one of our cells. So, if there is some dysfunction and the energy can not be made the cell does not function properly or dies. 

Cerebral folate deficiency(CFD) is a little more complicated to explain. I will try: In your spinal fluid, you will find folate....boy, I hope I'm getting this right....to cross the blood brain barrier, you need folate receptors. There are some times "things" that keep the receptors from accepting the folate. They fit together like a key. And sometimes your body makes antibodies to the folate and attacks it, like an autoimmune disorder. You also need energy for the folate to pass through these receptors, so if you have a mitochondrial dysfunction, you have no energy for that process. Aren't our bodies complex?!?! FYI....cows milk can cause this as well in some people. So glad we don't drink milk! Sorry, farmers: ) I have links to the medical articles that explain this so much better than I, but was very thankful for my semester of Anatomy and Physiology so I could half way follow!

Here comes the hope; they are treatable!!!! I just got a lump in my throat just typing this. Praise Jesus! I don't want to mislead anyone, we don't know how much we will get back, but it means that Lilly will continue to improve and improve and improve! We are waiting for her new medication to come in and we will be starting that immediately. We will be having more blood work done this weekend to give us more answers, as well. 

Another exciting thing.....we are getting a hyperbaric oxygen chamber for our house!!!!! This has helped Lilly so much and she needs to be getting these treatments as often as possible. Again, take advantage of the hyperlinks to get more information!

We are so thankful for God's continued guidance down all these paths. I can't believe what we have learned! I watch her now and try to imagine what the future holds. God is so good! We will keep you all posted on the new things to come and please, if you have any questions, don't hesitate to ask. And pass on this information to other families!!! We will keep you posted!

ALLLLLLLLL DONE!!!

We just finished our last dive!!!! It is always bitter sweet in the end. You don't want the healing to end but you miss home and family so bad you can't stand it. But we have learned so much and are excited to start things once we get home! Lilly's speech and language have flourished and her ability to express what she knows has greatly improved. This video was shot by her speech therapist. I had dropped her off and went to the store. Lilly was asking for me. Listen closely in the beginning as the therapist asks, "Where's Mommy"? Lilly's reply is "Bye". Then the therapist asks her to say, "Where's my mommy?" Lilly whispers her response. I'm so proud of her! Lilly has also started shaking her head for no. And we are getting closer to "all done". Lilly's is more like "allllllll" but we will get the "done" before you know it!

See you all in Missouri!!!!

Liz and I took the kids to one of the many parks in Madison on this gorgeous night! We had a picnic and the kids played on equipment and just enjoyed a beautiful time with friends!

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: