Low Digoxin Levels!

The past few weeks Lilly has been acting as if she had an ear infection, so I finally took her in. She had not been running a fever, just had some balance issues and was pulling at her ears.
Took her in yesterday to see Dr. Jeremey Forster in Chippewa Falls. 'Ears look good, she looks good, let draw blood!' Well, tests came back with nothing that would make her dizzy although her Dig' levels were pretty low, 0.08 to be exact (take my word it is low). Which means that her Digoxin dose may need to be increased because she had gotten off the Furosimide 3 weeks ago. At least we found out before something happened. The Digoxin is one of her MAIN heart meds..... yeah it would not have been good!

Anyways, on a lighter note we are up on weight,(7.3kg) 16.1 pounds!!! We have crossed the great 16 pound mark Yay!

Well, that's all for now! I'll let you know when I hear about the meds changing.

It's October but Summer weather!

These last few weeks are too good to be true! We have been trying to enjoy the nice weather as we "Mid-Westerners" know will come to an end very shortly. I was upset that we were not able to get down to Al's Run/Walk this year as with work and everything else being so crazy! But, we had a great weekend anyway!

Saturday, Paul and I had a much needed Date Night-well, we were both working but we were together! Spend the day at our friend Glenda's putting in a patio door and window. Then we sat around by the fire and had a few drinks! It has been a while since we could go out all day and not need to worry about the kids!

Sunday is normally our "cutting wood" day to maintain our storage for the winter. However, we all went to breakfast and then headed up to Cameron for their huge Pumpkin patch. To those who have not been there, let me elaborate...Pumpkin cannon, bounce house, petting zoo and of course the corn maze and fresh caramel apples! There is a boat that is lifted up by straw bales that has tunnels running under it, this, and the petting zoo was by far both of the kids' favorite!

Monday was Lilly's first Nutritionist appointment with Tracy. The appointment was good overall and Lilly was actual up to 15.5 lbs (7.05 kg). We are adding butter to everything and Tracy is actually wanting us to feed her ice cream and peanut butter as much as possible. She gave us a list of some high calorie foods and some recipes to try. We are now adding 60-75 ccs (going up another 5 ccs bi-weekly) pediasure to her morning and bedtime meds. So far I can tell that her little cheeks are starting to pump up again! Maybe we will finally get out of size 2 diapers!
Thank you for checking up with our little family and I hope that everyone enjoys the rest of the fall season!

Sleeping with her new winter hat

Yes this is outside the petting zoo!

 Nap time + a 1/2 hour tractor ride=not so happy Lilly

Under the boat in the tunnels



Some stuff, different day!

Lilly has been doing really good! Eating more and more every day. Ramen noodles are her favorite...I must say! It is an amazing feeling knowing that we have not been admitted for almost a whole year.(knock on wood!) Her GI doc seems to think that she is underweight, well... she is, very underweight! I am sticking to my guns, "NO G-Tube!" and as much as he hates it, he can't deny me that.

Her O2 and heart rate has been good. 85% and normal heart rate. Weight...like I said she is really underweight, she was at 6.8 kilos (14.5 lbs) and for being 18 months old is in the bottom 1%. Oh well, what can they expect! We also got off her diretic (furosimide) completely. So far so good.

We are now on 1.5 calorie Pediasure and have some recipies that actually sound kinda tasty. We will give those a try starting next week, along with the Diatary journal we need to keep. We will see a Diatician every two weeks until we get back on track.

With cold and Fllu season upon us, of course Lilly and the entire family for that matter come down with it. Dyaln's lasted 48 hours but the rest of us had been stuffed up and runny nose for the last week. Lilly seems to be tolorating it fairly well.

She has not figured out how to climb! Yep, I am in for it now! Window cills, coffee table (kitchen table for that matter) and everthing else to try to fall off of!

Thinking of our heart friends and familys always! God Bless and take care this Flu season!

Wedding in Nebraska!

The HHC Picinic was wonderful. How time flies by when your "heart" families go their seperate ways!

Our next adventure took place August 25th until August 29th in Bassett Nebraska.

Paul's Brother was getting married and we left with Paul's parents to the Corn husker State. The ride out there was not too bad,..... just 10 hours long! We left around 6pm and arrived at the hotel by 4am the next morning. This was nice because the kids slept most of the way and were able to watch ELMO'S WORLD the entire way there.

Here we go!

You can tell he's excited!

 It was so hot and windy while we were there that the kids couldn't stay outside for too long. I think the tempature the whole time was highs of 95 - 100 and winds around 25-30 mph! At night, it was cool, almost too cool!

We had a great time visiting and we even tried "Rocky Mountian Osters"( let me just say that they are NOT from the ocean...or any body of water for that matter!). Here are some great pics that we took while we were there.

Rehearsal dinner at the Bootstrap in Bassett NE

Dessert~ yep she was a mess!

Waiting on the preacher-yes, she was late!

I love this picture!

Grandma Lisa with Lilly

We can see who wears the pants!

Thinning her blood~ it was empty just fyi

Moose (Chris and Paul's Cousin), Kirk (Brandi's oldest brother), Chris (Groom),

Mikey (Brandi's youngest), and Paul

My Lil' Man!

Lilly is really happy!

Daddy and Lilly

Her Butt makes her look like an ant!

Dylan swimming all my himslef, well, almost!

Grandpa John and the kids at the hotel pool.

We spent a lot of time in this small pool. The deepest the pool went was 3 feet!

Lillys health is just great! We are now on 1.5 calorie Pediasure and her weight has been steady around 15 1/2 pounds (7.10 kg). At least she is not loosing! Heart and lungs sound great and now we wait until Ocober 1st for our next and hopefully last Cardiologist appointment of the year!

I can't wait for the holiday to come so we can see Chris and Brandi again! With them living so far away now, we all miss them a lot. Congrats guys and we love you.

Quick weight loss!

Lilly's weight has dropped very quickly in the last few days from 7.79 kilos to 7.1 kilos in 2 days! i finally found a nutritionist  that would listen to my concerns and we are starting her on Canola oil with her bottles, 1cc per 2 oz. We are also going to try mixing the Pediasure with some Coconut milk to see if this helps at all. Wish us luck! I will keep you posted as the weekend goes on.

What a Month!

July was absolutely crazy! We have now moved to our new home across the field as of last weekend. From a 3 bedroom to a 5 bedroom plus 2 office rooms, yeah now I need to go shopping to fill this house!

Our new address is: E7601 1400th Ave
New Auburn, WI 54757.

Thank you to Paul's parents who has stuck by us and finished the house! We have had many nights with few hours of sleep, while visions of trim guns danced in our heads! Dylan helped us paint the new house and is continuing to help us put up the tin on the "old house" shed.



The kids are enjoying the room and I find it amusing when Dylan chases Lilly around downstairs and then Paul chases Dylan upstairs. Lilly really is putting on the miles walking back and forth across the house. Her balance is much better every day. 

We have had a big scare this past Sunday. We had laid the kids down for bed and sat down to watch a movie. Around 11pm Lilly was screaming and Paul had gone up to find a nuk for her. She had the feeding bag tube wrapped around her neck three times and also around her leg. Needless to say, We have not used the G-tube since.

I have talked with Lilly's GI doctor who is giving her 6 weeks to get her weight in control otherwise we will go back to the g-tube. Our neighbors have suggested coconut milk, as if is high in good fats and other vitamins and minerals as well. Pedisure also has a 1.5 calorie drink coming out in a couple weeks. So instead of  1 calorie per cc it will be 1.5 per cc; we are not sure where to get it yet but this is another option.

August will be a busy month as well for us. In two weeks we have a Herma Heart Picnic at the Milwaukee Zoo. We are looking forward to seeing all of our heart friends and to visit at the zoo.

Then towards the end of the month, we are making another trip to Nebraska for my brother-in-laws wedding. Paul and Dylan are so excited to see Chris and Brandi. Me, well, I am too, but I am not looking forward to to long drive!

My job is going wonderful and we are possibly having people work from home starting next month. This means I wouldn't need to drive an hour to work and back.

Other than that things are great. Pray for our heart families, and a special prayer for Caden and his baby sibling coming soon- don't scare Mom and Dad too much Caden!!

Thank you for stopping to check in on us! Have a great day!

Found My Camera!! With more pics!

Oh... Funny thing happened this morning! Dylan had gone outside to play and he opened the door for Lilly (without my knowledge, while I was doing clothes) who was in nothing but a diaper. He comes running into the house screaming that Lilly was in the pool. (not really a pool, sand box full of water). Needless to say I hauled outside to find her sitting in a turtle sandbox full of dirty water looking as if she were taking a bath! Splashing around....just being a typical kid!

Lilly just so darn CUTE!

Lilly pushing her toy looking innocent

Getting into trouble!

Lilly taunting Koda

Lilly and Dylan enjoying outside

Dylan being his dirty self

 

Milwaukee April 2010

Chris, DJ and BB Harper

Ben with Mom, Dad, Big Brother and Big Sister

Ben Meert 2010

Ben and Gabbie

Gabie with mom and Dad

Jack with Mom and Dad

First steps!

It is amazing how seasons fly by and how fast kids grow! Yesterday night, after I had gotten home from work, Lilly stood up in the center of the Living room and took a step. As she was taking that step, she started to loose her balance and took two more quick steps before falling over!

 Cardiologist appointments are going good as well as GI appointments. We are starting to wean Lilly off of her Metroclopromide (appetite medication) and see how she does. One dose per week is what they told us to do; so far so good. Dr. Fish, her GI doc, is thinking by our appointment in October, we may need to move up a size on her G-tube. Dr. Dietz, her cardiologist, keeps reassuring us to let her be a kid! Not to worry about her weight and know that she is not far behind normal kids her age.

We took the kids to the Lake for the first time this summer. Dylan is far braver than we give him credit for....he was walking out to the deep end and I kept yelling at him not to go any farther, but he is 3 and a boy... he kept right on going out to his neck before he stopped! Lilly is just as brave. Trying to crawl in chest deep water and eating as much sand as she could before we could stop her, just wasn't working all that great! They were both mad when we had to leave.

We have been working on our "new" house and will be moved by the end of July. This has been tough with work because we are not able to spend much quality time with the kids. But it will be WELL worth it in the end!

Oh and just for everyone's information, Baby Elizabeth (Ellie) is home! Just found out she has been home since the 6th and doing great! Congrats to the Potters! 

Not to mention all our other heart families who (knock on wood...) are doing GREAT too! 

We have a Herma Heart Picnic coming up in August and we can't wait to bring the kids down to Milwaukee Zoo and see all our friends!

Here are some pics I found (I will have more when I find my missing camera ☺)

Dylan playing in a box at Uncle Chris and Aunt Brandi's

new house in Bassett, NE

Lilly just chillin' first time in NE

also Nebraska

 

Lilly and Boone in Nebraska

Dylan's 1st Head Trauma (yes that is blood running down his face and he is smiling)

my niece Julie, nephew Derek, Dylan, Me and Lilly

Visiting My brother Jason and his girlfriend Sara in Minnesota

Dylan taking a cat nap

Lilly with Daddy's hat waiting for her check up

My hunter during hunting season 2009

Shoot them deer!