Update on Dakota

Dakota had another doctor's appointment today to see how his leg is progressing and we have GREAT news!  We are rid of the clunky, super heavy, pain in the butt wheelchair.  WOOHOO!!!!!!!   He is still required to use his walker full time for now, but during the next three to four weeks of physical therapy (starting next week) he will hopefully regain enough strength to re-learn to walk without using a walker or crutches.  So here's hoping he will start out the New Year on foot :)

We had new x-rays taken of the hips and of the leg itself and all is looking like it should at this point.  The ball joint is starting to thin out and will soon start to fall apart, but will be held in place when it starts regenerating because of the plate and pins.  This process, the deteriorating/re-growth of the bone, is going to take roughly a year to 18 months.

Dakota got the okay to start swim therapy and he is looking forward to that.  So am I since his activities are pretty limited and will be for some time.  He'll be able to burn off some of that energy.  The doctor checked Dakota's range of motion and he is still pretty stiff, so we have some exercises to work on more at home to get the muscles loosened up a bit.

At the last appointment we had a month ago, I had been very concerned about the weight loss and the depression that Dakota seemed to be suffering from.  I am very glad to report that once he was allowed to go back to school and interact with other children again, he snapped right out of it.  He is also, very slowly gaining weight.  I believe we have gained a pound in the last month and a half.  His appetite is steadily getting better though.

Well I believe for now that is all I have to update ya'll on.  Thanks again for everyone's thoughts and prayers for us.....keep em' coming.  We have a long road ahead of us yet!

Recipe For Love

Ingredients:

2 Hearts Full of Love
2 Heaping Cups of Kindness
2 Armfuls of Gentleness
2 Cups of Friendship
2 Cups of Joy
2 Big Heart's Full of Forgiveness
1 Lifetime Together
2 Minds Full of Tenderness

Method:
Stir daily with Happiness, Humor and Patience.  Serve with Warmth, Compassion, Respect and Loyalty.

I Love Him, I Hate Him!

So I had a mental break down today!  No Joke, I really did!  I had sort of felt it coming on all week long....lots of things had been building up, but the icing on the cake today was my puppy Oreo.

So last week it snowed and now he doesn't want to go outside to pee pee or poop (can't really blame him there, I wouldn't want to take a crap outside in the snow either when it's only 20 degrees outside).  So for a week he has been having accidents left and right, which is not only frustrating for me, but pisses my mom off something awful since it's HER carpet getting peed on!

Normally Oreo would ring the bells hanging on the door knob (he's smart enough to get trained to do that, but apparently then forgets how to pee)  we would open the front door and let him out, he would do his business and come back up the steps.  Whole process would maybe take five minutes, if that ( I love him)!  Not today....nope we are talking a good half hour process and it ending with me in tears and totally pissed at him.

So this afternoon, he rings the bells like a good boy (I love him) to go outside to pee.  I open the door, let him out and tell him to, "Go Potty".  He stares at me like are you insane woman?  I stick my head out the door again and tell him again to, "Go Potty".  He starts sniffing around and I think to myself okay he's looking for a spot.  Nope, WRONG!  After about 10 minutes I go stand out on the step and he decides about then that he's gonna play....Tag, your it and takes off running (I hate him).  At this moment I feel my blood start to get a little warm, but I try to stay calm and call him inside.  He looks DIRECTLY AT ME, turns and runs the OTHER WAY! (I hate, hate, hate him).  Finally after 20 minutes of this crap, I am in tears downstairs in my room, watching him through my window, wondering how in the hell I am going to get him inside.

Finally my mom opens the door and calls him inside and he runs inside and comes downstairs into my room wagging his tail (did I mention I hate him?).  I was so angry with him (and was still crying) I picked him up and put him in his crate.  He must have known I was not liking him at that moment, cause he laid right down and I didn't hear a peep from him for a couple hours.  In the meantime, I decided to re-arrange the furniture in my room while telling myself to calm down and tried to convince myself that I STILL loved him.

Two hours later, I have a very clean, re-arranged room, a migraine and a puppy that needs to be let out again so he can pee (oh joy)!  This time however I put him on a leash and decided to try attaching him to the doggie post outside to see if he will go that way.  Nope!  I took him off the doggie post and walked him around for two minutes and he went potty.  We then went inside and he showered me with puppy kisses (little shit knew I was angry with him).  How can you not love puppy kisses?

What I have found out today, is that he has to be leashed and has to be escorted outside in the freezing cold weather to pee and to poop (so I must freeze with him)!  And you know what, I will do it every damn day for the rest of his life because....I love him!

Glitter in the Snow!

I love this time of year! It starts to get cold and then before you know it the snow starts falling. You have Thanksgiving which in my family brings wonderful food from both my mom's house and my dad's. It usually also brings my maternal grandparents into town for the weekend, which is nice since I grew up about 1200 miles away from them and for so many years didn't really have them around. Then after Thanksgiving we haul out all the Christmas decorations and everything goes up. The lights, the trees, the garland, the mechanical reindeer and sleigh, and ALL of the Christmas CD's. Something about this time of year just makes me more grateful about all things in my life.

Sometimes I don't think we realize just how precious life is. Today for some reason I remembered something my son said to me last year in the car on our way home from school. There was about 2-3 feet of snow on the ground. It was the beginning of December so we had a tendency to drive through some neighborhoods on our way home to look at lights. We were almost home and Dakota out of the blue asks me, "Mommy, did God put glitter in the snow?" I had to smile and after a split second of me thinking I had the cutest kid on the face of the earth responded with, "No honey, why?" "Cause it sure does sparkle!", he said. After thinking about what he said I realized that I had never noticed before just how much new snow did sparkle and the beauty of it. I told myself that I was going to try really hard to notice the beauty of all seasons for the next year and I have.....

In Spring (the season I hate the most due to my horrible allergies), I noticed how the rain washes all the dirty snow away and everything looks clean. How soon after the snow disappears the grass becomes like a green blanket again covering all the brown from the winter. How a puddle of water can become fun again by standing in it with your bare feet and splashing around like a little kid. The birds start chirping again and the air smells fresh and alive.

In Summer, I noticed how the tiny grains of sand felt on my feet and how fun it can be to fish standing in the water up to my calves. I learned that I care about the icky, slimy fish that we caught. Cared enough about them to learn how to take them off my hook this year so I could throw them back into the water. I noticed their breathing patterns while dangling from the end of my line and felt bad, wondering what was going through their mind at that very moment. I could almost see the fear in their bulging little fish eyes. I noticed the baby bird learning how to fly for the first time and hoped it would be safe until it succeeded in taking flight.

In Fall, I noticed just when the leaves started to change color and just how beautiful the red and purple leaves were. I noticed when the leaves started to crumple and fall off the only home they had ever known. I noticed how once the tree had become bare, that the leaves lay all over the yard and for the first time since I was a kid I raked them up into a pile and kicked them everywhere. I noticed the leaves laying on the sidewalk while my mom and I walked the dog and I kicked those leaves too!

Tonight is the first night this year we are supposed to get snow and I plan to see it's beauty and it's sparkle all over again.......After all God spilled the glitter bottle for all of us to notice. When will you start?

“Life is full of beauty. Notice it. Notice the bumble bee, the small child, and the smiling faces. Smell the rain, and feel the wind. Live your life to the fullest potential, and fight for your dreams.” ~Ashley Smith quotes

Indian Chili Chicken

So here is the recipe that some of you asked me for:

Ingredients:

4 teaspoons flour

4 teaspoons chili powder

4 boneless skinless chicken breast halves

2 teaspoons vegetable oil (I used about a tablespoon of butter instead)

1 (10 ounces) can chicken gravy (I used homemade chicken gravy that my mom had frozen)

1/2 cup shredded Monterey jack cheese

Directions:

Mix flour and chili powder. Use 1 teaspoon flour and 1 teaspoon chili powder per chicken breast. Coat chicken. I used a bit more cause I like to spice things up a bit :)

Fry chicken in butter, turning often, until browned and done. Once done remove from pan.

Stir in the gravy; heat to a boil.

Add the chicken again, reduce heat to low and let simmer for about 5 minutes.

Sprinkle with cheese.

My "Friend" No More!

You can stand there and smile you can sit there and laugh

but you can't trick me I know it's a mask

You’re trying to lie to me and everyone else
but why is it that you’re lying to yourself?
You can calmly sit there and try to look cool
but I know your emotions and I know you’re a fool
I know inside you your feelings rage
The suspense builds with the turn of a page
By day you’re one person by night another
and neither of them have anything to do with each other
I've watched you sink farther from your heart
and all of this just tears me apart
I sit here and cry, for you not for me
What you've become I wish you could see
No words could I use to help me explain
what it does to me to see you in pain
You’re not there anymore my dearest friend
I hate to say this but this is our end

To My Angel Babies....

August and October will always be hard months for me to get through. I didn't have you for long, but I had you long enough to still miss you now! It has been 1 year since I lost you both and I still cry every now and then....

August 26, 2009 was a devastating day. I didn't have you long, but I still love you. You will never be forgotten.

October 25, 2009 I lost my little girl. I can't explain the pain, physical and emotional that you go through when you lose something that is a part of you. I will always love you and will remember you always.

I have lit two candles at church in memory of you and have also planted two lovely pink lilies in the memory garden at church. A nice lady at church made a beautiful pink prayer shawl for me to curl up into when I miss you.

I find some comfort knowing that you are safe in heaven with God and that you all are watching from above. I feel your presence and know that I have not lost you forever. We will meet again one day :) I love you both!

5 weeks.....

Well today was Dakota's 5 week checkup! I can't believe it's been 5 weeks since he had surgery, but it has been. And we have some Great News!!!

When we arrived at the clinic, we sat around for 45 minutes waiting for a room to open up. While we waited I guess they decided to get the x-ray taken care of so, we got set to go do that and then sent back out into the waiting area. Let me tell you that shuffling around from here to there and back again isn't easy when you have a 54 pound child and a wheelchair that I am guessing weighs close to 20 - 25 pounds. My biceps are going to be killer by the time this is all said and done!

LOL :)

Okay so we finally got a room an hour after our scheduled appointment time, but that's okay! We got settled in the room and a few people came in and out to ask him and I some questions. We got to see the x-ray and found that the femur that had been cut during surgery has completely healed up and is holding the ball joint of his hip nicely into the socket. So our hope is that when the ball joint deteriorates and then grows new bone it will stay in place where it is now. The incision was looked at and all is good with that. It has healed nicely has well. So good news there. Our new restrictions are: he can sit at a 90 degree angle, but not to lean forward. He has to use a walker to help him walk for the next two weeks and then if he is able to move on to crutches he can do so. He is not allowed to put all his weight on his right leg, but is allowed partial weight bearing. He got the okay to go back to school, so his first day back is tomorrow, which he is super excited about. We have a field trip to Famous Dave's which I am lucky enough to be a part of. While in school he has to stay in his wheelchair still, but as he regains mobility in his leg he will eventually not have to use it. He is also required to have physical therapy once a week for the next 6-8 weeks to help him regain strength in his leg. The doctor had a couple concerns to keep an eye on. Dakota has lost 4.5 pounds in the last 5 weeks because he is just not hungry (he hardly eats). So I have been instructed to get him on PediaSure so that he is getting all the nutrients he needs. Then we have to keep an eye on Dakota and depression. In the last 5 weeks he has seemed to just be sad :( But the doctor says that happens to a lot of kids when they go from having an active life to not being able to do hardly anything and thinks that once he gets back into school around his friends he will snap out of it. I hope so, but we will see :)

So after we met with the doctor we got shipped over to the gym in the clinic for our first physical therapy session and wow talk about overwhelming, but I was so proud of him for giving it is all and doing his best. He was told to lay down and then had his leg moved around up and down and in and out, to see what his range of motion was. Apparently for having surgery only 5 weeks ago he has really good range of motion, which is good. It means with continued physical therapy it will continue to get better. He was then given a walker and was shown how to use it. Slide the walker forward, step with your right foot very lightly and then step with his left foot full weight bearing. It was a challenge, but he got the hang of it pretty quickly. He then was given crutches to try the same concept with and we decided that we are not ready for the crutches just yet.

Anyway, so we are all set for school tomorrow (I think) (I hope). I have to take care of a few things yet, but it looks like we are on our way to a good recovery. Woohoo :)

Dakota's Surgery

Wow! What a day :) It started at about 6:00 this morning....I got Dakota ready for the ride down to the hospital which was about a 25 minute drive. Surgery was scheduled for 9:15, but was about an hour late. Dakota was great in pre-op. He had a discussion about what was going to be done and got to see some of the equipment that was going to be used (the non-scary stuff). His "big bear" also got to have surgery with him and came out of surgery with his hip taped up and an IV taped to his hand. Poor bear....Poor Dakota :(

Surgery lasted just over two hours and let me tell you that was the scariest two hours for a mom to have to go through. One of the nurses would call once an hour and give me updates, which helped calm my nerves for about 30 minutes and then I would start to get worried again until I got another phone call stating all was well.

Once Dakota's surgery was finished and he got wheeled into PICU and I got to go see him. He was very groggy and in a lot of pain, but the nurses were great about seeing that he was taken care of. We had to keep an extra close eye on his lungs because he has asthma and even though his asthma is VERY controlled, it was still a concern. As he would wake up and realize he was in some pain, he would get upset which would cause his oxygen levels to go down. This happened a couple times, but the last time it happened scared the crap out of me. Red warning lights started going off.....things started beeping and the whole time Dakota's crying. I tried to stay strong, by keeping it together and trying to help him breathe. He was given some more morphine to help with the pain and then things went smoothly. I have never been so scared in my ENTIRE life.

Dakota has a incision on his right thigh that is about 4 inches long and he is in a knee mobilizer and a boot to keep him from moving his leg. Once things calmed down in PICU, he got transferred into our room. There he got moved to a different bed and all vitals were checked every half hour. As the half hours ticked by, his blood pressure continued to drop and he also ended up with a fever. I got very concerned once again when I saw his blood pressure hit 94/45. We were given some bubbles to promote blood flow and oxygen to the lungs. This helped raise his blood pressure a little bit more. Slowly things started getting better.

He managed to keep liquids down and a few bites of food, but just wasn't all that hungry. I can't really blame him though, all I'd wanna do to is sleep. But by about 7ish a lady came in and said that they were having an art project down in the play area and was inviting all the children to come down. Dakota seemed to be interested in that, so three nurses and myself worked to get him into a wheel chair with all of his IV's and monitors attached and I rolled him on down the hallway. He was able to color his own cardboard seahorse and then fill out a worksheet about his seahorse. His yellow/black seahorse has been named "Pony" and it's an 8 year old girl that likes to play, compete in races, eat small minnows and catfish and lives in a cave.

The first night was nothing but me getting in and out of bed. Every four hours we had a nurse in our room checking his vitals which got much better through out the evening.

It has been exhausting, not only for Dakota, but for me as well. I can't imagine being 8 years old and having to go through this, but he is a great little boy and is making the best of an unpleasant situation. I realized today as I waited around and watched him struggle just how much he is going to need me and I can only hope that I am able to provide the support he needs. All I can do is turn to God and pray that I have the strength to push forward even when things seem to be in reverse.

I want to thank all of my family, especially my mom and dad for their support and for helping me out. I couldn't have done it without you guys. I also want to thank all of my friends for their continued support, it does not go unnoticed. May God watch over you, like he has watched over us....

Hugs & Kisses

Des

Miracle League - 2nd Game

Dakota had his second and last baseball game with the Miracle League on Sunday, September 19, 2010. Once again he had a blast and really came out of his shell this time around. Dakota also won the "Captain of the Day" award.

He will not be able to attend the last two games as he is having surgery on Sept. 22nd, but come next season if Dakota is able to take part in this great organization, we would be honored.

Miracle League - 1st Game

The Miracle League is a baseball team for children with disabilities. Dakota is now a part of this team and his first baseball game was this past Sunday 9/12/10. He had a blast and can't wait for his next game this coming Sunday.

I am so very grateful that he was able to join this league and become part of a team. It showed him that just because he is in a wheelchair that doesn't mean he can't enjoy his favorite sport. It was also an eye opener for me. Normally, the league accepts children who have permanent disabilities, but they accepted Dakota anyway even though his is temporary. Seeing the other children out there with disabilities ranging from Polio, MS to varying degrees of Down Syndrome made me realize just how lucky we are. Even though we are having to go through this, my child will be able to run and play baseball without a wheelchair again at some point.

The league has only four games per season and the games last about two hours long. Each child gets paired with a buddy, to help them hit and catch the ball and to help run/wheel them to the bases. The buddies are not to do the work for them, but be more of a guide. Dakota's next game is on Sunday, September 19, 2010. This will also be his last game, as he is having surgery that next week and will be on bed rest. Even though it will be short lived, it's an experience I am glad we got to take part in.

JuSt a LiTtLe StReSsED

So I just got a letter today from Dakota's doctor who will be performing the surgery on Wednesday, that not only does Dakota have to be on bed rest for two weeks after his surgery, but he will be missing anywhere from 4-6 weeks of school. I don't know how I missed this tid bit of information, but alas I did! I thought he would only miss two weeks of school.

Let's just chalk up my lack of knowledge about this on StReSs, shall we???

Will keep you posted on how surgery goes, so keep a look out :)

Dakota's Diagnosis - Perthes

So our journey with Perthes started back in June of 2010. My son, Dakota, had been limping for about a month at that point and after trying everything I could at home to take care of it, I decided it was out of my hands and hauled him into the doctor's office.


They right away did a series of x-rays and didn't find anything to be wrong with the bone, so they sent us home. I waited another month. One night, while sitting on the floor watching TV Dakota tried to stand up and just winced in pain. "It's breaking" he said. The next day, I took him back in to see the doctor. And once again, another series of x-rays was ordered. This time, however, the bone showed a slight fracture. This is when Dakota's primary care physician diagnosed him with Perthes.


Perthes is a condition in children characterized by a temporary loss of blood supply to the hip. Without an adequate blood supply, the rounded head of the femur (aka the "ball" of the "ball and socket" joint of the hip) dies. The area becomes intensely inflamed and irritated. Although the term "disease" is still used, Perthes is really a complex process of stages. Treatment may require periods of immobilization and/or limitations on usual activities. The long-term prognosis is good in most cases. After 18 months to two years of treatment, most children return to normal activities without major limitations. Perthes' severity is graded on an A, B, C scale. "A's" are usually treated with just limitations on activities. "B's" are usually put on crutches (which we were told to use for a month) and have limited mobilization and "C's" are treated with surgery. We got sent to a specialist, who by the way is just super helpful and understanding. He ordered a MRI for Dakota that same day and had us come back about 3 days later to look at the scans. The scans confirmed that Dakota's entire ball joint was dead and the doctor classified his severity to be "between a B and a C". Because of Dakota's age (he is on the older end of the age range) and the B/C classification the doctor and I agreed it was in his best interest to have the surgery done to try and correct it before it collapses on him.


Surgical treatment re-establishes the proper alignment of the bones of the hip. The head of the femur is placed deep within the socket. This alignment is kept in place with screws and plates, which will be removed about a year later. Over time the ball joint will collapse and start to look a little like swiss cheese. After the collapse occurs, new growth will start to form and because of the plate that was inserted, the bone will grow correctly into the socket area. After he has been released from the hospital, he will have to be on bed rest for two to three weeks depending on how recovery goes. He won't be allowed to move at all. I will be homeschooling Dakota with help from a home bound teacher, so that he doesn't fall behind in his studies. Then, based on how well he bounces back from surgery, he will eventually get put in a wheelchair and then again eventually be put back on crutches while going through physical therapy to re-learn to walk.


So our surgery date is set for September 22, 2010. Until then, we have been given a wheelchair that he has to use, so that no weight is being put on his hip. We had our pre-op appointment this morning and that went very well. He is a very healthy boy, besides the Perthes! He is a trooper and hasn't complained once about having to live life in a wheelchair. I am so blessed, because there are so many out there who will never be able to live life without a wheelchair. My son, at least, will be able to run and walk and play sports again some day. I need constant reminders that, "This too shall pass!" We are a strong team, him and I and this will only make us stronger!


I have included pictures (below) to show what Perthes looks like before it's been surgically operated on and then after the operation.

Perthes on the right (left leg) - ball joint is flatter and outside socket area - this is a very severe case, Dakota's doesn't look this bad.

After the leg has been operated on and had the screws and plate inserted. You can see where they try and re-position the ball so that when it grows back it grows into the socket area.