Crazy Things I've Heard This Month

*Do you know your head is looking like a seven?  (Mallory, said to Drew after he cut his head)

*(Watching a tv program about parents that don't give their kids consequences)
Me:  How do you think those kids will turn out?
Elizabeth:  They will probably be stuck up and might turn out in the street. So snobby hobos.

*(Edward and Drew were working on Drew's Cub Scout first aid requirement.  It covered bandaging wounds.)
So should I go get a knife?  (Drew, completely serious, thinking he needed to create a wound that they could practice bandaging)

*Look, Mom. I'm a thigh dancer.  (Drew, showing me his dance moves)

*Please bless us never to have bad hair days for church.  (Mallory, said during family prayer last night)

Why My Son Is So Amazing

I love my kids.  I love them each for so many reasons.  They are unique, beautiful, special little people.  But I wanted to write about this handsome guy.

He is my hero.  He is just amazing.  I love him because of so many reasons.  I want to honor him for the way he handles this stupid, rotten, ugly disease of Type 1 Diabetes.  He has had a few times over the last three years since his diagnosis that he has broken down about it, but I can probably count the times on one hand.  His acceptance of this aspect of his life is truly to be admired.  He's a boss.

As we begin a new school year and the accompanying task of informing the teachers and staff of his daily care, he really steps up to the plate.  Not every T1 diabetic is comfortable with having others know of their disease, but it doesn't bother Ross.  I'm thankful for that.  In fact he is better off having everyone around him know about it.  I'm always grateful for the teachers who, when I go into the brief details of Ross and his care, show sincere concern and willingness to help.  And for those that give me the impression that they would rather be somewhere else than listening to this Momma talk about her son's health, I want to grab by the shirt and scream, "THIS IS IMPORTANT!  THIS IS LITERALLY A MATTER OF LIFE AND DEATH I'M DESCRIBING TO YOU!"

I spent the evening reading the CaringBridge page of a young woman that has some very, very severe health issues, T1D included.  Her mother is involved in several communities made up of other T1D parents.  She recently asked the other parents what they wished others knew about diabetes.  Here are there responses:

Trish: I wish people knew how serious and deadly this disease is. I honestly think people just think "Oh, it's just diabetes" without knowing what it takes to keep my T1 son alive everyday.

Betty: It IS hard, but it's doable...staying positive is the key...even when you don't think you can. Most antibiotics last 7-10 days...insulin is everyday, every time they eat...imagine how many times you have missed a dose of antibiotics...now what if your child's life depended on it.

Lori: Because of the dangerous, life-threatening side of the disease, it is harder to let our kids have the freedoms that their peers have. So don't judge us for being "over-protective" as many people criticize us of being. We don't have a choice.

Jeannette: The thing that irks me the most is the confusion between T1 and T2. I could pretty much tolerate the rest.
Shannon: I wish people understood that diabetes is serious and not just say, "Good thing it's ONLY diabetes."

Melanie: That I as a parent do know what I am doing, and while I do appreciate your concern, don't question everything I'm doing or tell my child what to do diabetes care wise. Know that most of what your going to say to me will probably go in one ear and out the other because that is my way of coping with all the "suggestions" people tend to have. I do respect your opinions and thoughts, and realize that until 4 years ago I probably had the same thoughts, but I know what's best for the care of my child and if I say she can or cannot do something or can or cannot eat something then my word is written in stone.

Louise: When I go into the school to talk the talk I'm not just "overreacting" and I do know you have another twenty or so children to be responsible for. The whole time I sit across from you describing what to look for, I'm hoping that you are astute enough to recognise that look in my eyes is not anger, but fear. Fear that you're looking at your watch because you're not getting the message. She is your student for 6+ hours a day but she is my life and my baby.

Jennifer: I didn't know how much it could affect every single part of a person's body and life until it happened to someone I loved. I think if you could tell someone something about diabetes its that it CAN and DOES happen to even you, it's not just something you hear about on TV. It should be something everyone should be educated about.
(From the young woman's mother)  And lastly MY thoughts. If I could tell you anything it would be that we D-Parents did NOT cause our kid's diabetes by the foods we fed them or the activities we let them (or didn't force them) to do. Type 1 Diabetes is an AUTOIMMUNE DISEASE...just like Celiac Disease, Addison's Disease, Hypothyroidism, Rheumatoid Arthritis, and Graves Disease. NONE of these diseases can be prevented.

I wish that people knew that when our kids blood sugar goes low it's a medical emergency that has to be treated NOW. If it's not they can have seizures, go into a coma, or die.

I wish people knew that more T1 diabetics die from low blood sugar than high blood sugar...and their blood sugar levels have a nasty little habit of dropping during the night, which is why a large number of us get up every two hours during the night to check their blood sugar levels.

I wish people knew that we are literally fighting for our kids lives every single minute of every single day, so if you REALLY want to help then educate yourselves, ask us questions, learn how to recognize the warning signs and what to do in an emergency.



Amen.  Amen.  Amen.  I agree with everyone of those statements.  Every time someone says to me, "My grandma has diabetes."  I just want to say, "Not the same.  At all."  I don't think too many people realize how serious this disease can be.  And I can't really blame them.  Before April 20, 2009, I can't say I knew too much.  But, boy, have we learned a lot about it since.  And that's why I want to publicly express my admiration for my thirteen-year old son.  Because he handles this whole awful thing with such determination and dignity.  I hope others can understand my excitement when a hopeful new study comes out that has the potential to make huge strides in Type 1 treatment.  And I hope others will understand my desire to put as much money as possible into research.

I love this boy!

San Francisco

Due to Edward's dedication and hard work throughout the year at American Family Insurance, he qualified for a trip to San Francisco.  We left the kids at home with Grammy and Grandad (We didn't feel too badly for leaving them since they got to experience paradise just a few weeks prior!).  Funny enough, two days after we got back, my parents also had a business trip in San Francisco.  Amazingly enough, they stayed at the same hotel and were exactly two floors above our room!  We were in 2065, and they were in 2265.  So crazy considering our respective companies booked the trips!

Edward and I left the 100 degree July weather, and were welcomed by 50-60 degree weather.  Oh, it felt so nice!  We were glad we packed jackets and jeans, because we were cold that first day until we got a little acclimated!

Bay Bridge

Alcatraz

This was one of the highlights of our trip.  It was very interesting.  We highly recommend the tour. 

I think this was near the famous Pier 39.  Pier 39 was interesting and worth stopping by but very touristy.  It honestly reminded me of Universal Walk down in Orlando.  It was so crowded and had many of the same types of shops.  But I'm glad I can say I've been there.

Golden Gate Bridge

July is the cool/foggy season in San Fran.  Only one day could we see the top of the bridge.  It was still gorgeous.  We didn't have time to walk/bike across the bridge, but we did cross it by bus.  I was so sorry we didn't get a chance to stop!  Oh the photo opportunities!

Muir Woods was another of our favorite spots.  It was unbelievably beautiful!  I think I could have stayed for hours.  This is a must for anyone visiting the San Francisco area.  I was so in awe of God's creations!

We had a funny experience while we were there.  There were a lot of homeless people downtown.  Being from small town Missouri, that's not something we are too accustomed to.  After finishing only half my dinner one night, I asked for a box with the intention of finding someone that could use it.  As we stepped out of the restaurant, Edward pointed across the street to a small Asian woman pushing a little cart.  We set off to catch up to her, weaving in and out of the crowd.  As we reached her, I was just getting ready to tap her on the shoulder when we realized she wasn't homeless at all.  She was just a street vendor, packing up her supplies and heading home for the day.  Oops!  That could have been a little embarrassing.  Instead we found another man that could use it instead. 

We really enjoyed San Francisco. It's a place I would love to go back to and hopefully take the kids someday. I felt like we needed more than four days for sure. We found the people to be friendly and helpful. The food was delicious. The weather was superb!

Wright Family Vacation 2012

Every other year, my very generous parents treat us to a wonderful vacation.  Some trips are small and some our big.  This year's vacation has been our biggest.  Because my dad travels all over the country, he quickly acquires many frequent flier miles and hotel points.  He chose to redeem those points for a stay in Grand Cayman Island, and we were the lucky beneficiaries.  We spent a week in paradise in early June.  We visited the amazing Turtle Farm and had such a great time seeing and touching sea turtles of all sizes.  We took a fun adventure on a pirate ship, including jumping off the back of the eighteen foot tall ship.  The snorkeling on the island was unreal.  I could never describe how beautiful it was.  But mostly we just were beach bums.  I am ready to go back!

Thanks for the memories, Grammy and Grandad!

Crazy Things I've Heard This Summer

Sometimes because I am with my kids 24/7 in the summer, I don't always find humor in the things they say.  But there have been some funny things this summer.

*Do you want me to pick out some fancy clothes for you so you and Dad can go smooch?  (Drew, said as Edward and I were getting ready to go out for our anniversary)

*(Drew came down the stairs without a shirt)
Me:  Drew, why aren't you wearing a shirt?
Drew:  (Without missing a beat) Because, I'm too sexy for my shirt.  Too sexy for my shirt.  Too sexy for my shirt.  (Complete with dance moves)

*(When on vacation in Grand Cayman Island, iguanas and chickens roamed everywhere - similar to squirrels and rabbits here)
Oh, no!  That baby chick is going to get separated from it's mom, and then a hobo is going to eat it for lunch!  (Elizabeth, said when she saw a line of chicks following their mother, and one was getting left behind)

*Wow, you have high arches.  Guys dig chicks with high arches.  (Elizabeth, said while looking at my foot)

*(Lucy's debut - upon approaching a cashier at Walmart)
Lucy:  Hi, Daddy!
Me:  That's not Daddy, Silly Girl!
Lucy:  Hi, Elmo!

We Have An Answer

     After a frustrating eight weeks of watching Lucy limp, we have an answer.  The MRI revealed fluid around both knees.  We were thankful it was nothing more severe.  But how does a baby get fluid on her knees? 
     On Friday July, 27th we had another appointment with the pediatric orthopaedic surgeon. I told Edward to stay and work that day, so Grammy joined us for the follow-up.  Guess who was walking normally again at the time of the appointment?  The doctor asked a few more questions and watched Lucy walk again.  She said the tests were all coming back normal, and she just didn't see anything.  She suggested it was perhaps a quirk of a nineteen month old.  All along I knew it wasn't something Lucy was just doing for fun, because I could tell she felt pain.  She said sometimes specialists are only looking for certain things because they look with blinders.  I understood that.  She suggested we visit with a pediatric rheumatologist.  I wanted to scream when she mentioned it often took a while to get into the rheumatology clinic at Cardinal Glennon.  We thanked her and were on our way.  As we were leaving, I mentioned to my mom that I wondered if she thought I was making this up.  She didn't make me feel that way, but I still wondered.
    When we got to the parking lot, I called Edward to tell him of the latest news and then called to make an appointment with the rheumatologist.  It was their lunch break.  Of course!  More waiting!  So Grammy, Lucy, and I enjoyed a lunch at a favorite spot - Chevy's.  Lucy really held her own with the beans!
     As soon as we finished, I called the rheumatology clinic again.  I was delighted to get an appointment the following Monday.  What a blessing!
     On Monday afternoon I sent Edward to work again, and Lucy and I headed back up to Glennon.  I think I know every pothole and bump in the road between here and there!  I just have to say how much I love everyone at Cardinal Glennon.  They are so friendly.  I just love that place.  And the rheumatologist, Dr. Syed, is another person that makes us feel comfortable in the midst of all our health issues.  She examined Lucy and pointed out several things, like swelling above Lucy's knees and her limited range of motion with her right leg and hip.  She tracked down the results of her lab work and told me one of the tests was a little elevated.  Children her age were usually right around a five, but Lucy was a thirteen.
     After asking me a lot of questions, getting a history, and examining Lucy she diagnosed her with another auto immune disease - juvenile rheumatoid arthritis (type 1 diabetes is also an auto immune disease).  She believes she has the mildest form, meaning four or less joints are affected.  She showed me some physical therapy to do with her at home and suggested we keep her pretty active.  She said swimming is a great thing for her.  Lucky for us she is happy to comply with that order.  Dr. Syed also prescribed Naproxen to combat the pain and stiffness in her knee and possibly hip.  We are suppose to have a follow-up appointment in September.  There are two eye diseases that are often associated with JRA, so we also have to meet with a pediatric opthamologist in September.  She will have check-ups twice a year with both the rheumatologist and opthamologist. 
     Poor Lucy also had to give a urine sample (That was fun!) and more blood tests that day.  Bless her little heart.  That really can rip out a momma's heart.  A funny thing happened as we left the little room where her blood was drawn.  I brought her out to a small waiting room as she was trying to quiet down her sobs.  I was comforting her, and her heaves were coming less frequently.  A mom and daughter walked into the room and stood opposite of us.  They were talking to Lucy, and telling her what a pretty girl she was.  Lucy raised her little finger in the air and pointed it at them three times while quietly muttering, "No.  No.  No." as if to say, "Don't even mess with me.  I've had a rough day, and I don't want do talk right now."  All I could do was giggle.
     Lucy has been taking the Naproxen twice daily for a little over a week.  I can't even begin to describe what a difference this medicine has made in such a short period of time!  The first three days after beginning the medicine she limped maybe a total of an hour.  Contrast that with usually limping four to ten ours A DAY.  She hasn't limped in six days.  I do still get a little resistance with her hips when changing her diapers, but I don't know if that is just a habit/she anticipates pain or she actually still has some pain. 
     The biggest change, though, has been her personality.  She is like a new girl!  She is so feisty/funny/busy/vocal/energetic/etc.  It makes us feel sad to know she went for over two months feeling so lousy, but we are so grateful to see her improve and return to her happy, spunky self.  My mom has seen her several times this week and marvels at how different she is acting.
     We are sad to know she, like Ross, has a chronic disease.  However, it could be worse.  We know this is something we can manage.  Again, as with Ross's diagnosis, we are grateful to live in a time that we can treat the illnesses with ever changing technologies.  Modern medicine is a miracle.

Peg Leg Lucy

After my brother posted a picture on Facebook of Lucy being prepped for an MRI, I've gotten many texts and messages concerned about her.  It's been a long and frustrating process.

About three months ago, I noticed Lucy wouldn't put weight on her right leg when I got her out of her crib in the morning.  This only lasted for about an hour, and it happened three mornings in a row.  It went away as suddenly as it appeared.  I could not, and still cannot, remember her falling or injuring it in any way.  About a month later my mom was keeping Lucy and was concerned when she began limping again.  She would act like it was really hurting her.  I kept an eye on it, and again, it seemed to go away.  A few days later we left for vacation.  It really began to become prominent while we were there.  So much so that I was ready to hop on a plane early to get it checked out.  This was what she would do each morning.

 

Throughout our week long vacation at the beginning of June, it progressed to walking stiff-legged.  I made an appointment with a pediatrician, thinking he would know the best direction to take.  I came prepared to show him the video, because the strange thing is that sometimes she limps all day, and sometimes she doesn't do it much at all.  It comes and goes throughout the day.  Of course at the time we went to the pediatrician on June 14, she wasn't limping.  He checked her movements, looked for swelling and signs of infection then ordered x-rays.  Basically I felt a little blown off.  He was not interested in watching the videos I took documenting her limping.  The x-rays came back clear.  The pediatrician on call the next day just told me to watch it.  That didn't sit so well with me. I had no desire to just sit back and watch my baby limp with no explanation.  Three days later and nearly in tears, I called our orthopaedic surgeon friend in Sikeston.  He gave the suggestion to call our family practice doctor and possibly get some labs drawn and possibly an MRI.  The first thing in the morning on June 18, I took her to our beloved family practice doctor.  She sensed my anxiety and concern.  Of course Lucy wasn't limping at that moment, but she watched the videos and immediately recognized my cause of alarm.  She said she wanted to refer us to a pediatric orthopod.  An appointment was made for June 22.  We liked the doctor.  Again, Lucy wasn't limping at this point so we showed her the videos.  She mentioned a few things and a few avenues to take, the first starting with blood tests.  I didn't dwell on everything and allow myself to worry, as we had a major family event that was weighing heavily on us at the time.  We headed over to have blood work taken at St. Anthony's.  After a very frustrating week of not getting anyone to return my calls about the blood work and having to show my Mommy Bear Claws on the phone, we learned the labs came back clear.  An MRI was ordered... two-and-a-half weeks later.  I have felt helpless, mad, frustrated, and worried sick throughout all of this.  She had the MRI at Cardinal Glennon two days ago, and we sit and wait for the results.  We pray they reveal something and give us a direction to take.  I feel that Lucy is limping for longer periods each day, usually between four and ten hours a day.  Only two days in the last seven weeks has she not limped at all. 

It certainly doesn't slow her down! She has learned to maneuver that little leg to do what she wants to do.  She climbs and plays with it straight out.  When we hold her or she sits in a carseat or stroller it is straight out.  If she falls, it stays straight.  I've tried tickling her, and she continues to keep it straight.  Obviously something is going on because an eighteen month old does not know how to fake something like this.

It sometimes causes her pain and sometime doesn't.  Some days if we feel around her knee she winces and cries and pushes our hands away, but most of the time she doesn't.  What seems to hurt her the most is when it's straight and it gets bumped.

We are baffled by what is causing this.  It's so sad to see her like this, although it doesn't really stop her from doing much.  It does trip her often and make her fall.  We've affectionately termed her Peg Leg.  We hope we can get some kind of answer from the MRI.

 7-18-12

Summer Break!

 That means climbing trees,

baseball in the yard,

 and swimming!

The kids have been out of school for a little over a week, and we've done a whole lot of all three!