Feeling Better!

Well last night was long! However, today Pie seems to be doing really good! They have her on tons of antibiotics and pain killers so she is also really crazy!! She likes to run from one end of the house to the other laughing at nothing! It is really wild watching her! I am hoping that she keeps getting better and back to normal! But Pie is going wild and not calming down for bed so I better go get her relaxed!

My Poor Babies!

Well yesterday Gage was told he had pink eye and strep throat.... UGH! Then they told me Pie Pie had an ear infection and strep throat too.  Both kids had high fevers and started their meds right away! However, last night at about 4 am Pie started having some pain in her back and side. This pain came on and off until about 930 when it lasted for an hour straight and I decided this wasn't normal pains for her or a cold. So we went back to the clinic where they informed me that Pie didn't have strep or an ear infection.  They did run her blood and urine. They also did an x-ray and ultrasound to make sure everything inside was ok.  We were at the clinic a really long time when they finally came to tell us that Pie has a Kidney infection.  They gave her two shots in the legs and now she is really sore from them and the infection.. But I better get off here she is starting to get worse..

Great News!

Pie had her appointment today and her eyes are not involved with her joint issue! So we can now rule out Sticklers and move on! She might need glasses but we are not going to worry about that until next year and hope she out grows it! Pie is also excited to know she doesn't have any appointments planned until November! It will be a nice break from all the doctor appointments we have been having!
Gage also had a great day on his first day of the 3rd grade! He said recess and lunch are still his favorite subjects but the other subjects are ok too! LOL! He also likes his teachers! But he has karate in a little while so we better get moving!

Another Appointment

We have still been very busy! We went camping and road Sparkles a few times. Pie wishes Sparkles could move here but I told her our yard wasn't big enough! We also finished any school shopping and got the house and yard all cleaned up! Yesterday was busy too with open house for Gage and a doctors appointment for Pie. Pie's appointment went well and they are sending us off to see an eye doctor tomorrow to check Pie for Sticklers syndrome. I really don't think this is what she has but I guess we need to make sure I am right. This syndrome can cause children to become blind, deaf and comes with the joint issues like Pie has. But I am sure I will be able to report good news tomorrow on that! So then we will just be waiting on the genetic tests to come back! But I suppose I better finish my other chores tonight! Gage starts the third grade tomorrow!

Getting Ready!

We have been home for about five days now and we have been getting back to our busy ways! Pie has done her PreK registration and will be starting the morning class in September! She is very excited to be going to school! But, we are still trying to fit in as much fun in this summer as we can! So we have gone to Snoopers and had a great play date!
 Gage got to sleepover at grandma's house one night but poor Pie had to miss out. She fell on her head and got a huge bump so she stayed at home with me! This weekend we hope to go camping a little! We also got all our school shopping finished and started to talk about the different goals and plans we all have for this school year! We are all very excited! I just hope that those test results come back and tell us good news!

I Can't Believe I Forgot!!

With all that had been going on I completely forgot to add her new x-rays! They look great! Pie Pie is in the regrowth phase and they even told us she doesn't have to do all her PT!! I still plan on doing it some but not nearly as much! We are very excited about this news! We are hoping this is almost the end of our Perthes journey! With any luck we will find out soon enough!

Continue of Great Week in MN!!

 Thursday morning Pie had her appointment with the genetics doctor at 9am in the Minneapolis Children's Hospital.  We had a little wait but then they brought us back to the area to check her blood pressure and weight. Pie was scared and upset a little so they ended up having to do her blood pressure twice to make sure her numbers were in the normal range (which they were). After a short wait in the room a nurse, doctor, student and another lady came in to the room. The nurse just talked a little and got Pie some juice to help her calm down some. The doctor started to ask for a history on Kadence's life and my pregnancy with her. They decided to run a few tests on what I had said then the doctor rambled off some rather large confusing words to the student! I was needless to say very confused! Then the doctor and student left and let the other lady take down all our family history. After that the doctor came in and told me she felt Pie might have Multiple Epiphyseal Dysplasia. There were a few other things she mentioned but felt that this was the most likely to be what Pie has. (http://demo.perthes.org.uk/?page_id=180)
The doctor also said she wanted me to take Pie to an Opthamologist to check her eyes out.  We still have to make that appointment but will do so soon! They sent us down to lab again for Pie to give her blood one more time. They poked Pie in the same arm they took blood from the day before and they didn't get anything so the had to poke her again in the other arm. I felt horrible for Pie she kept asking me to do it and I couldn't help her understand that I didn't know what I was doing.. But Pie did get herself a new little bear for doing so good! The blood they took will help run 6 to 10 different genetic tests.  What they said to me is they are looking for one of Pie's genes to be miss spelled.  They also said it could be something that they have never seen before which is kind of scary.. This will take 40 days for the first one to be done and 10 days for each following test.  So we hope to hear something back in 40 to 90 days. So we will keep praying for the best news.
 This appointment lasted about 4 hours and we were all ready to do something fun so we choose to check out the Minneapolis Science Museum! It was full of cool stuff! Pirates, human body parts, a mummy, two headed turtle, guitars, flames, boats and much more! We spent a long time there checking out all the amazing stuff! All the kids loved it and I have to admit I thought it was great too!
 It was a lot better then the school shopping we did in Albertsville on Friday or all the driving we did Saturday to get home! But Friday and Saturday weren't all bad! We got to spend them with some of our favorite people and we got to eat really yummy food! My favorite was my monster omelet and Pie loved her hot cocoa at the Original Pancake House! But the end of our time in Minneapolis is always sad with all the good byes..

Great Week in MN!!

We got to Minneapolis on Tuesday. We found our hotel and went for a long swim. After that we went for supper in the hotel and played at the arcade! We had a lot of fun and released a lot of built up energy before bed time! When we got up on Wednesday we hurried up and got ready to find the hospital. We located the Shriner hospital but thought we should find the Children's hospital too.  After finding them both we headed back to the Shriner hospital and checked in.  They got Pie Pie back for x-rays right away! We finished up the first set of x-rays and they made me a CD while Pie got to pick a prize for being so good. She picked a bag of make-up but she didn't have anytime to look at it since they needed to do a few more x rays of her hips. They sent us to the another area to have her height, weight and blood pressure done. The lady there was really nice and helped us to find the next lady that took poor Pie to the lab to get her blood drawn.. She was scared and really didn't want it done but she did a great job! Pie even got a new art box out of the blood work!
We went for a quick lunch break and let the kids play at the park and then up in the game room at the Shriner's. They had a lot of fun and Pie even had a good time!
She wasn't very happy to have to go met with the doctors again but she did a great job letting them test her walking and ROM.  She seems to have good ROM and only a little weakness in her muscles. That is why her knees knock together to bad.   The Doctors aren't sure what Pie has but still think it would be best if we treat it like Perthes until we know exactly what we are dealing with.  They suggested we still see the Genetics people the next day and that we check back in with them next time they come to Bismarck or if they need to see us sooner Minneapolis again. After that nearly 5 hour appointment, we left feeling hopeful about what Pie might have but still a little worried. 
We decided to help our minds get off the appointments by going to the Mall of America! We went shopping, got some really yummy chocolates, did a build a bear, and went through the Mirror Maze! The Mirror Maze is really neat, kind of scary and mildly nauseating!
 We also got another stuffed animal to add to the over sized animal hoard in Pie's room! But all in all we had a great time! We finished the night off by having my neice spend the night at the hotel with us!

Wow! Time has gotten away from me!

I can't believe how fast this last week flew by! We have been busy busy busy!! We have gotten our hotel booked for Pie's appointments and all her records in order! We also have lined up a house and garden sitter! Just a few more things left to do before we are ready to leave! Can't believe the appointments are next week already! So far she seems to feel good with the occasional painful popping in her joints. I am hoping that she keeps going this way!
 Anyways, Pie got some very exciting news last week! She was excepted into a preschool! Pie wants to go shopping and then go to school! She doesn't want to wait anymore! LOL! I am also very excited for her. She gets an evaluation from them after we get back from MN and then she should meet her teacher! Gage has been being awesome too! He told Pie that if she "is naughty she will have to sit on the bean bag and brother had to sit there A LOT!"
 Gage did have a heart break this week.  When he came out of his friends house he was expecting his bike to still be sitting there but it wasn't.  Someone stole his bike.  Hopefully we can find it!

Thank You!!

I feel that the rummage sale was not only successful at getting us a little financial help but it also helped spread the awareness of LCPD! We had several people asking questions and being very interested in Pie's story. I think it helped me to grow a lot too! It was just amazing!! Thank you everyone!

Rummage Sale This Weekend!

Pie Pie and Gage had an excellent time camping with their grandparents. I also had a great time catching up on life! I managed to get the house clean, bills paid, and get organized enough to have the benefit rummage sale for Pie! I still have a few things left to do but it should be easy! I just hope we get a good turn out! Pie wants to make pictures and bracelets to sell at it too! I think we might work on that tomorrow! Maybe that will help her not be so upset with me. I made her mad by starting her PT again. She didn't have to do it when she was camping. I think she really liked the break from it but hopefully we can get back in the swing of things and have a great week!

Things Are Going Good!

Things have been going well for Pie.  We have heard little complaints but nothing major. However, she has been popping loudly but doesn't seem to hurt her to badly. She kind of sounds like an old lady crackling.. It turns my stomach every time I hear it but I suppose it could be much worse! Anyways other then that we have been really enjoying outside! We have been having BBQ's and going to the river. Today we had a picnic with Grandma by the river then went for a long walk! The kids found tons of fish bones they insisted on bringing home... Yuck! Then we went to the Crab Apple for some really yummy ice cream! Pie got the bubble gum kind! After that we went to the lake for a while until we decided to go see if Sparkles wanted to take the kids for a ride! Sparkles was happy to see us and gave both Gage and Pie a nice long ride! I think they missed her too! I am hoping we can get back to Grandma's soon but we have a very busy week ahead of us. Also, we might have a rummage sale next weekend to help with travel expenses and bring some awareness to perthes disease.  I realize we are not sure what Pie has but I still think it is very important to bring some awareness of Perthes!

Six Days and Eleven States!!

The week before last was very stressful for our family so we decided to tag along with my hubby on his work trip! I was a little concerned how Pie and Gage would handle 10 hours a day in a car but they both did wonderful! We made it a point to swim as much as possible and to get out of the car do some of her PT. We didn't do all of them but we did what we could! We also explored at every stop we made! I think it helped us all to get out of town but was even better when we got back home!!
 On Monday, we let Pie and Gage invite all their little neighborhood friends over for a BBQ and cake for their dad's birthday! We did a little bon fire and made smores! We also had fireworks until the cops came and told us we couldn't! Pie and Gage thought it was really funny that mommy got in trouble!! It was a lot of fun and through all of that we never heard Pie complain of pain in her legs! She did however mention her arms were bugging her.. I am hoping that it is growing pains but something inside of me worries it is more. I am very thankful that we have the genetics and orthopedic appointments coming up!  But I better get off of here and have fun on the 4th of July! Hope you all have a wonderful day!!

What A Day!

The kids and I spent the morning playing in the yard. Then we had lunch at McDonald's play land!  I was exhausted by the time we finally made it home! I was up for a nap but the kids thought it was time to play a little more! So we compromised and they played while I read through some mail that had been piling up! That is when I found the itinerary for the appointment Pie has on August 8th. I was surprised that they really sent out one but also shocked to find out they weren't messing around when they said 3 to 4 hours for the appointment! I am now curious how long the genetics appointment will last.  I think we might want to search for some mess free activities to come with us on this one! We also need to start figuring out our plans..
Anyways, Pie and I are having a girls night tonight! We grilled and set up the tent! We were going to stay in it tonight but it stinks and looks like it might rain.. So we ran to DQ for some ice cream and stopped by our garden to hydrate it! We are now snuggling and watching some cartoons! But bedtime is fast approaching and hopefully we can both sleep amazing!!

August Appointments Set!

Pretty Murphy!!

The last appointment is set for August 9th! This appointment is to see the genetics Doctor and see what they think Pie might have. I am not really sure if they will run a full genetic test or if they will just talk with us. I think either way it will be a positive thing! I just need to decide what I think about the appointment in July!


Noone was safe!

This weekend was rather busy with some of my family staying with us! We had my two nieces and one of their dads! Oh and I can't forget their big baby Jack! Jack is a large lab/pit mix, he just likes to snuggle! Anyways, it was a great time getting to see the kids together and having lots of fun with Pancake! I think Pancake might be depressed now that the girls have gone!! Hope he Hops back to his old self! He he!! Pie Pie did have a few hard times with her hips.
 I could feel how hot they were and gave her some medicine before she even started to cry about them. I am glad I did because it wasn't long after I gave her the meds she was crying in pain.. But she is sleeping now and seems to be doing good! Hopefully it was just to much fun that had her hips bugging her! Well better get going have a busy day ahead of us!

Hmmm What To Do...

We are still waiting to hear from the Shriner's about when the genetics appointment is going to be.  Hopefully they get back to me soon! I am also having a hard time deciding what to do about Pie's appointment with her normal doctor. Pie would normally be seen by her doctor in July but with the other appointment in August, I am unsure if I should cancel or just do both.. Maybe I will have to see what Tubby has to say about it!
 I am kind of concerned about all the popping she is having in her legs.. Today she didn't have to much popping but we also didn't do much for physical activity! We played with Pancake (the bunny), worked on our garden, and watched Gage! It has actually been one of our calmest days since school let out! Maybe tomorrow we will do a pinterest party!

What a Week!

This summer is just going to be crazy! Pie has learned to try to get her way by asking over and over and OVER again for whatever it is that she wants!
She has also learned what a day of grounding is like.. I guess her and Gage got to do that together! My house shined after they were done! They went right to bed when they were done! I think they must have been tired! Luckily, that was only a small part of this week! 
We also went on a nice family trip to Fargo (thanks to Jesse's work)!
 The kids loved playing at the park and swimming! I think they also liked shopping! I know I enjoyed going to some different shops! Pie did have a little pain because of her hip popping. It only seemed to bug her a little while.  I gave her some Tylenol and it helped so much she fell asleep eating her dinner! She even slept good that night too! But we are all very happy to be home and back in our own beds! Maybe this week will involve going to my parents house, the zoo, and another picnic!

Staying Busy!

We have been very busy rummaging and having BBQ! Also, today the kids went to the water park with their dad.  They both got sun burns but Gage's is the worst. They got aloe on and went to be with out much fuss! Pie has been tripping a lot and you can hear her hips popping. She doesn't seem to be in pain but it is so hard to tell some days..  

Sleeping Already!!

Since we have had such a busy week, Pie Pie is starting to have a hard time. She cried a little tonight about the pain in her legs but I am hoping that will pass. She took a nice long warm bath and went to bed around 6.  I just pray she sleeps through the night and feels better tomorrow!

Wow! Slow it Down!!

I can't believe it has already been a week since my last post!

 We have been really busy with family and friends! It is crazy how much we have done this last week! Luckily Pie Pie has been feeling great and even got her teeth checked and they look amazing! Gage's teeth are also good! Now for the weather to warm up a bit more and we would be having a super summer! Luckily we have my niece and nephew to entertain us tonight!

Busy Busy Busy!!

Sorry I didn't update this week! We have been crazy busy!! Gage only has four more days of being a second grader and one more day of being a wolf cub! Pie has also been keeping busy trying to make new friends and exploring the world around her. She has had several days where she hurts and she has also been popping a lot.  I hope it is just from the weather changes but I am not sure. I have been doing some research and think that the doctors are thinking she might have MED. Here is a link to one of the sites I found the most helpful..  http://www.perthes.org.uk/associated-conditions/   I just pray whatever it is they can give us some direction.
Today was as busy but the most exciting part was getting a little bunny to love! He was thrown into the wild by his previous owner and saved by my sister in law.  She called us thinking we would help him... She was right! He is living in a dog kennel munching on lettuce now! He seems happy! Gage and Pie really want him to live with us but I don't know if I can handle the constant headache from my allergies.. I guess only time will tell!
Hopefully, I will be able to blog tomorrow but we are very busy again with the cub scout cross over and finishing up an animal research paper! Wish us luck!  

What Fun!!

Yesterday I got a call from the Shriner's and they have made an appointment with their orthopedics doctor in August around the first part of the month. However, they are still struggling to nail down an appointment with the genetics doctor. I keep hoping to hear from them soon!!
Anyways, last night was tons of fun! Gage had a sleep over with a few other little boys for his birthday party! They even let Pie play with them! They had tons of candy and played really hard! Thankfully they went to bed around 11:30 pm!! Pie and I also had fun painting our nails and putting on glitter tattoos!
 Today was also a blast! We went to the park and had a little party with all the family and friends! Gage was excited for the presents and cake! Pie was more concerned about who she was going to play with!!  I think it was a great day! Pie even managed to get a little PT in! I hope she stays pain free tonight.  Gage and her are now at their grandma's house having fun with their sleepover! But I better get off here and get ready! We are going to Stomp!! So excited!

Pie had a long day!

Pie Pie had a wonderful day with one of her aunts. She went on a field trip with the forth grade class and got carried most of the time! Pie told me she had lots and lots and lots of fun!! After she got back from the field trip we went to get some seeds for our garden and then to party with her brother for his birthday! We partied by going for a walk then hanging out at McDonald's play land! We knew it was time to leave when birthday boy ran to the bathroom thinking he was going to be sick! So far he hasn't vomited but he still doesn't look so good! All in all we had a really great day! I think we are all ready for bed!

Another day!

Today was rather uneventful. Still no word from the Shriners about the appointment. Also, it rained most of the day so we were unable to play outside much... We did paint a while and lazied around most of the day watching tv! We did get a little motivated and cleaned up a few messes around the house! But mostly just a wonderful day to snuggle! Pie was totally pain free! Anyways, hope tomorrow is drier for Gage's birthday! He will be eight! Very exciting!

Still waiting...

I called the hospital and we discussed the appointment, however, nothing is set in stone.  We are thinking maybe in July but that can still change in any direction.. We did get a package of paper work that I have been filling out.  Hopefully, that part will be over soon! Other then that Pie has had a little pain but nothing major. She has even slept through the night all week!! She seems to have lots of energy and is having a great time helping around the house and riding her scooter.

Had a Great Weekend

On Friday, Pie Pie helped bake and decorate a cake with Gage and I for her grandma's birthday. We also did a few crafts and just hung out and had a fun day together! Saturday we went to my mom's house for her birthday. Pie hung out with us in the barn while we shaved the sheepies!

Self Portrait! She was bored!!

We sang "Mary had a little lamb" and she kept trying to pet them! I think she had a lot of fun! She was also very happy to get to eat cake and ice cream!! Luckily she fell asleep on the way home! She was a little sore when we got home so I gave her some Tylenol and headed her back to sleep! Today was also very exciting! Pie had a party in the park for one of her little friends from the Y. She got MORE cake and swing with her little friend. It was a little bitter sweet since they finally got to hang out away from the Y but her little friend also told her she is moving out of state next month.. I hope Pie handles it better then I think she will..

Silly Girl doing "yoga"!

But I guess we will cross that bridge when it comes! I also have yet to hear about the appointment so I think I will be giving them a call to see what is going on! The more I read about genetic disorders that can be linked with perthes the more I would like to get them eliminated out of my mind! Hopefully I will be posting our plans of the appointments tomorrow!

Still Nothing..

We have yet to hear when the appointment will be schedualed.. I plan to give them until Monday before I start making calls to find out what is happening! I would really like to know when the appointment is so I can get everything lined up for when we are gone. It would also be nice to know how many days we will have to be there! But I guess we will find out soon enough!
Other then waiting, the kids and I have been making plans for the summer! We can't wait for camping, going for walks and just getting dirty!! Pie keeps asking if the alligator is out at the zoo! I told her when he is out it will be camping time! Hope he is still gone because the nights are still really cold!! Gage thinks we can handle the coldness! I don't! But we won't make it to the zoo this weekend anyways so we should be good!

Gathering Information

Well I spent most of Saturday chatting with a lady that has a twelve year old daughter that went through a similar experience as we are going through right now.  Her daughter will be having surgery tomorrow morning at 6 so everyone please keep her in your thoughts and prayers! Anyways, she gave me a lot of good ideas and suggestions such as gathering a family medical history and writing a list of oddities about my Pie Pie.. She also suggested I write down things about my pregnancy with Pie. So yesterday I started to gather information from my husbands side of the family. I made it through his mom's side yesterday and his aunt helped me through his dad's side today! There really isn't much there that would be helpful that I am aware of but who knows! It might help the doctors. I plan to gather more information from my parents tomorrow. I just pray that whatever they find is something we can handle!
Today was also one of the first times that Pie was left out because she was unable to play with the other kids. They were playing on a trampoline and she isn't suppose to jump so she wasn't allowed over there. She cried for a while but got over it after she spotted a butterfly to follow! We went hunting! But I hope we hear something soon about her appointment.. I will keep you posted!

Confused...

So we met with the people from the Shriner's Hospital today.  I thought this appointment would be a simple step in the right direction. However, I am now more confused then before.  The doctor asked several of the same questions as Dr. S and he also had the same concerns and confusions with my Pie.  So this doctor is scheduling a normal appointment for Pie to meet with the Shrine's Hospital Peds / ortho doctor. But, he also wants us to meet with a genetics doctor. He feels that Pie might have a genetic disorder that is causing a perthes like reaction in her hips. He said he might be wrong but that what I had told him and the xrays being so symmetrical makes him feel that it is something more then just perthes.  I don't know what to think right now... I just know we will be on our way to Minneapolis again within the next month..

YIPPIE!!

OK! So I can breathe a little better now!! Dr. S just wrote telling me Pie looks like she is healing well! He also said that her left is healing a little faster then the right which might be why that one has some pain. I had also asked what percentage of her femur head was involved and he told me she had a significant case of perthes with 100% involved.  That was scary to hear but with her age and all the exercises we have been doing it will help her to avoid a surgery and help her heal the best! This was such happy news!! However, there is still a very long road ahead of us!!

Still Not Sure..

The radiologist here has said there is minimal changes in her xrays but there are some changes. I am not sure what the changes mean so I have been waiting for an email from Dr. S but have yet to get one. I am hoping to hear from him soon but it is hard to say.  I might have to try calling him if I don't hear something soon. However, I do think most of the change is very positive but want Dr. S to confirm this for us!!

But on a brighter note Pie Pie had an amazing weekend with some of our family coming over to have a pinterest craft weekend party! She really loved Saturday when it was a Grandma mommy daughter cousin day! Lots of laughs, great food and lasting memories!!  I just wish I would have taken some more pictures! I also hope Pie doesn't expect that much fun everyday now! But I better start finding my house again!