What a great life!!

We spent last Monday at my mom's house. Gage had the day off and Pie really missed Sparkles. So we spent the day doing horse rides and petting puppies! Later that night Pie complained of being a little sore but I think it was just from all the excitement of that day!

The rest of the week flew by. With school, chores and PT, there isn't much time to blog! Pie did have an appointment last Friday. We got her ROM checked and she is above average for that! Pie also got some x-ray's done. The doctor was our normal doctor and we are very happy that she was willing to check her ROM and to get the xray's to us that day. I went home that night and e-mailed the x-rays out to Dr. Standard and a quick note about a silly bill.   I wasn't expecting to hear back about the x-rays until the chat this coming Thursday but to my surprise he emailed me today to tell me about the bill issue and he had also looked at her xrays! Anyways, this is what he emailed me

"The xrays look very good- the hips are well contained in the cups- as long as she has good motion with her exercises, she is progressing nicely and should heal well."I was soooo happy when I read the email!  This is really great news! But, I am also hoping that the pains she has will go away before the colder months hit. It seemed to be much harder on her during the colder months than the summer months. But I should really get back to school work since Pie is hanging out with her daddy at work right now!

I really suck at this now!

We have been sooo busy with school starting and moving our stuff in, that blogging has been pushed to the side! I am working on getting better at this! Anyways, Pie Pie has been having some more pain. She scared me last night when she couldn't spread her legs hardly at all.. I don't know what to think about that other than I better get her on a horse again! She seems to have a little tightness when spreading her legs again today but no where near what last night was. I am not sure that this is normal but I guess nothing is really normal with Perthes. She is also complaining of a back ache and her butt seems to hurt her too. She played hard for about an hour but other than that she has been sitting around.. I hope things get better and that I can get her to a horse soon!

Hair cut!

 Pie Pie's hips were really sore and she couldn't stop falling. She even kept telling me about how she walks funny. Since I had to return a movie to a friend who works at a salon, I decided to get Pie's hair done. They took about an inch off and put it in a cute pony tail! She loved it! After the salon, we went home for some lunch and played dolls! We had a great time and she even took a nap on the way to get Gage from school! I took that time to try and read my homework! I got a lot of my philosophy homework done! Anyways, when we got home Gage had to read two books and do a color sheet! Pie Pie seems to love that Gage gets homework! She gets all the benefits! She got two books read to her and she got to color for fun! But she is sleeping now so I should get some unpacking and homework done! Hope to update some pictures soon!

WOW! What a month!

I am so sorry to all of Pie's followers! We have been working hard to get our house pretty and moved in to! Pie Pie's room is now hot pink and full of her "stuff"!! She is really happy about it! Gage's room is also finished, only his is teal! We still have lots of "stuff" everywhere but it is getting there slowly! Gage started the second grade last week and he loves his teacher! I started another semester in college and Pie gets to start mommy's pre k schooling! Pie has also been having pain on and off all month.  I am glad it doesn't seem to be as intense as it was before. I really hope the pain will go away and she will be done with this darn thing already! Sorry! Anyways!!! Her PT has been going much better! She doesn't fight it as bad but I am also only doing it two to three times a day. We were doing it five times.. We plan to up it back to the five once we get a little more settled back at home. Also I plan to try and blog much more too! So keep checking back for more updates! And thanks for being patient!

So Sorry

We have been working on our home now that we are back! Not much has changed with Pie Pie but we plan to update the blog and continue it once we get back to a normal routine.  We have gotten our living room almost done and several other projects started but not yet finished. I think it might take another week or two before we get back to normal!  Please keep checking back and I am soo sorry to all the "stalkers" that I am not taking more time to update this!

Walking Around D.C.

 Today we started by jumping on the metro and taking it to the mall area. When we got off the metro and began walking, we found  the Sculpture Garden. We all thought it was neat and decided to walk around it! We started to get warm and thought it would be a good idea to check out a couple Smithsonians too! So after checking out some cool sculptures we headed over to the Natural History Museum. Pie Pie loved seeing all the skeletons.  She was telling us how they all had bones and their hips worked worse than hers! I couldn't believe how she was relating to all of it! It was also really cute and funny! Gage thought that the dinosaurs were really neat but he also liked the creepy bugs!

 After we were done with that museum we headed towards the Washington Monument and Lincoln Memorial. 

 Pie Pie gave up her stroller to her brother one time on the way to there! Gage kept telling everyone how bad his feet hurt! (It's amazing how his feet stopped hurting when we were doing what he wanted!) Before we got to the Lincoln Memorial we stopped to look at the Washington Monument, World War II Memorial and the Vietnam Veterans Memorial. Gage and Pie Pie thought they were really neat and loved hearing about why we have them.  Gage thought that his grandpa's name should be on the Vietnam Memorial until we explained why it wasn't on there!

When we got up to the Lincoln Memorial, Gage got bummed out! He thought there would be more in the cool building then there was! He was also sad that he couldn't touch it! Pie Pie just kept saying WOW! He's really big!! After that we went to the Korean War Memorial and started towards the Air and Space Museum. The heat and walking was starting to get to us, so we stopped for some ice cream and shade!! Once we had cooled off a little we finished the walk to the Air and Space Museum. We were all thirsty so we took off to the McD's inside the Museum!After hydrating and cooling off we started to check out the museum! Gage thought that the interactive kids area was the best! Pie Pie kept asking if we were going to go see Ciara! I guess I shouldn't have been telling Pie Pie that we have to fly before we can see her again! I do think Pie's favorite part was the different airplanes. (My favorite part was the air conditioning! Aww... It felt amazing!!!) 

 The last thing we had planned to see today was the Capital! When we walked up to the Capital both kids were totally amazed with how big it was! Gage's feet were killing him so we decided to sit on the little wall and watch a protest start!

 Gage was excited to see it.  He says that he can tell all the kids at school now! We finished watching the protest and walked back to the metro. We got back to the van quickly and headed to the hotel to shower! Now we are sitting in the air conditioning watching TV! I am trying to convince them to go back to DC tomorrow but they sound like they maybe vacationed out already! We will have to see!!!

Soaking Up The Sun!

Saturday was spent in the hotel and around the Laurel area! I have such a horrible cold that breathing was becoming a huge chore! So we took a day off and lazed around! The kids were bouncing off the walls until super dad took them out shopping for a little toy and movie! When they came back we snuggled and watched Rango! Pie Pie and Gage both told my cold to go away until I need one! I thought that was sweet!

Today we decided that going to the Atlantic Ocean was the way to go! So we looked up on the Internet some cool places to check out and decided that taking the kids to Delaware would be amazing! We left really early and got some breakfast for the trip there! Pie Pie telling Gage how they were going to the river! But when we started to cross the Bay Bridge both kids were speechless! They couldn't believe how high and long the bridge was or even how big the boats were! I was equally amazed! That bridge was the most exciting thing on the trip other than when we crossed from Maryland into Delaware! We were almost to the beach when Pie Pie started to complain about her butt hurting... Luckily we were able to get out and walk to the beach shortly after she started complaining! 

When we got to the beach both kids wanted to make sand castles and run in the water! Pie Pie sat down to close to the waves and almost got taken out! I grabbed her!!  Pie Pie didn't sit down in the water again but it didn't stop her from running in the water! Gage wanted to be covered with sand so we went back up on the beach and covered both kids up! We hung out a while longer at the beach then we walked around the boardwalk. About a half hour before we had to leave we went back to the ocean and splashed around some more. 

Then we took the long trip back to Laurel and ate at Bob Evans. Pie Pie told us while we were eating that when she gets big she is going to live in a big sandbox!! We are back in the hotel now and  wishing that the silly hot water wouldn't be so temperamental! Pie Pie is dancing around telling the water to warm up! Hope it happened soon since we are all covered in ocean water!  

Couldn't Be Happier

Wednesday we found the hospital and then spent the rest of the day at the Baltimore Zoo! We got in for free since the zoo pass we bought in ND works out here too! (So HA HA to all the people that made fun of me once the floods happened!!) Anyways, Pie Pie and Gage thought that the zoo was amazing. The zoo let them touch a turtle and they got to feed giraffes! They even had different types of animals that the kids have never seen before! After the zoo we drove around down by the bay and in the downtown Baltimore area! Traffic starts to get a little scary so we thought we should get out of there! So we hit up the grocery store by our hotel. When we got in the store there was this horrible smell! We couldn't figure it out until we made it to the fresh meat.  Turns out they have lots of fish here!! LOL! Pie Pie and Gage both thought it was neat to see all the different fish and even fruits and veggies! It's amazing how sad our stores really are... When we got done we headed back to the hotel for a little rest and a much needed shower! The humidity felt like we were swimming most of the day.. Yuck!

Thursday was one of the best days we have had in along time! We had Pie Pie's appointment with Dr. Standard and it made us not only understand what was going on with her but feel very hopeful! He took the time to explain that it is Perthes and that the other Dr might be confused because of some articles not explaining things clear enough. He says that Pie Pie's right hip should be starting to heal soon. That is still going to be a long road to it being (hopefully) great but this part shouldn't hurt as bad! Her left hip on the other hand is about to enter the more painful stage of the collapse. But he said it should be OK for her to run.  She is even OK to jump a little! He doesn't think she will need a surgery until maybe in her teen years, but this can change so I don't wanna say we are free and clear tell her teens! We were also given new PT exercises, some of the old ones might have been hurting her... Her ROM is wonderful too! We will have to keep up riding horses and doing the new PT! It makes us happy to know all the time doing that stuff is keeping her moving away from surgery! We also were given a tour of the house you can stay in if you do need a surgery at the hospital.  We all thought it was wonderful. So, if by some horrible chance, Pie Pie would need a surgery we could stay there rather then this hotel!

The doctor also said that if she wanted we could put her in dance and just don't have her do the jumps! I don't know that we would do that but at least we could walk out of a doctor appointment and not feel completely hopeless! After the appointment and tour we went to Walmart to get a movie and popcorn for our fun night! Before we left, we were approaches by a pregnant women with a little girl in a stroller asking for money we handed her a ten and we went back to the hotel for the night! ( I am trying to kick a cold/allergies) Once back the kids watched a little TV while I read my horoscope! My horoscope said now’s a great time to pay forward a kindness or generosity that was recently extended to you. Something as simple as leaving a few bucks for a homeless person will reward you in ways you never anticipated. Then we watched Rodrick Rules and went to bed!

 

Today we decided to venture to Washington DC. We found the Metro to downtown then to the zoo! Pie Pie and Gage thought that the metro was amazing! Once we got off we asked a couple if they knew how far away the zoo was.  They thought it was walking distance but then they gave us their trolley tickets ($100+ of tickets).  We thanked them and then walked over to the trolley waiting area! While we waited we started to talk to a couple from Cypress! They were really neat people and the kids loved their little boy! After that we took the trolley all around DC and then ended up by the Smithsonian national zoo after several hours of trolley ride! The kids loved the gorillas, octopus and kimono dragon! After walking the zoo we headed back to the metro then to our hotel where we ordered a pizza and here we sit! I hope to update a little more than I have been but we will see! It is really busy here!

Hello Baltimore!

After a long day of flying we finally arrived in Baltimore! Pie Pie and Gage both did amazing! Pie could NOT figure out why she couldn't hear and Gage could NOT get his ears to pop! Other then those two complaints the kids thought it was great! Pie Pie even fell asleep on the last flight! After we collected our bags we headed to the rental car place. 

 We ended up with a free upgrade because the lady felt bad for charging us a ton of extra money! (That is my opinion anyway!) Anyways we were all getting crabby and thought it best to find our hotel asap.  Thankfully it was really easy to find.  When I went into check us in they told me the nonsmoking rooms don't have hot water and might not even get it the next day!! I still choose the non smoking room since you could hardly breathe in the "non smoking" lobby!! I figure we might have to smell funny for a while but at least we can breathe! Anyways after that we just laid around watching TV and getting ready for bed! Pie Pie and Gage want to explore today! We are suppose to be checking out the Baltimore area today and go grocery shopping! I just hope we don't get too lost!

Mall of America!!!

After driving around looking at most of  Minneapolis and surrounding areas, we thought it would be fun to go to the big mall! Pie Pie thought it was great! She wanted to see all the girl stuff! Gage thought it was really lame until he set his sights on the Nickelodeon amusement park! I told him if everyone was really good in Baltimore that we would do some rides when we got back to MN.  They both think that will be great! We also visited the build-a-bear workshop for the first time! Gage got an army bear and Pie got a frog/lizard thing!

They are both excited to take their new best friends on the airplane tomorrow. I am hoping this makes for an easier time without their special blankets! They also can't wait to show their cousin! We get to go have supper with her and both her parents at some burger place around here.  I hope they allow furry creatures and excited monsters... I mean kids!!  After that I am hoping we can go see the cherry spoon and other neat things around the area! Also, I am hoping to upload some pictures of the fun we are having. However, it might have to wait tell we get home!!

We have gotten to Minneapolis!!

After a long SCARY drive, we finally got to our destination around 11 pm! Not to bad actually! Pie Pie kept telling us how sore she was but the storm was so bad that we couldn't get out of our car to stretch much. Thankfully the excitement of getting here helped out a ton! Gage and Pie mainly colored and played leapster!

Once we got here we visited for a while and then all went upstairs and crashed! We are very excited to check things out around here and maybe get to see my niece today! If not we will see her when we get back!! We better go get ready so that we can be like Dora! (according to Pie Pie!!)

Happy 4th of July!!

This has been a very busy week for all of us! We went camping and have started to prep our house to possibly be painted! I just pray that the water continues to stay away from our home. If it does, then when we return from Baltimore we will paint and move in! Pie Pie keeps walking in her room telling me it isn't pink yet!! I think she is super excited! She also wants to know when that silly airplane is going to pick us up!! Everything seems to be happening so fast! Tomorrow I have to call and make sure everything is still going to happen as smoothly as I hope! Then, I have to pack and leave for MN!! I plan to update the blog while in Baltimore but if I don't I will make sure that it will be updated once we return!!

Long Confusing Road Ahead!

Wow it has been awhile since I have last wrote on here! I guess the only really exciting thing was the trip to Grand Forks! We left yesterday and stayed the night in a hotel. The ride up was really neat! We stopped several times since Pie Pie seems to get really stiff if we don't get out and walk around! Pie's favorite stop was in Fargo at the Toys R Us!! We both got monster sized gum balls! Pie Pie kept telling me her mouth wasn't big enough!!  

Pie also thought the hotel was amazing!! It had a waterfall with a Coy pond at the bottom and four hot tubs around that!! It was insane!! They also had a little pool and a bigger pool!  Pie Pie even got to feed the fish after we had breakfast and did a little more swimming!! After that it was time for us to hurry up and get to the hospital. 

When we got there I had the wonderful papers to fill out while Pie Pie and her daddy watched TV! Lucky Ducks!! Shortly after I finished the papers they called us back to weigh and measure her! She has not grown at all since the last time.  I guess this shouldn't be to shocking since most of her relatives are short! :) We went straight back to the room with the nurse.  I fell in love with him, he was so nice and even talked to Pie Pie. He even got her to laugh!! That is a huge deal since she is really shy!! I guess asking a three year old if they smoke is a hoot!! Anyways after that they took the xrays I had brought and scanned them in. The doctor came in and talked about growing pains while waiting for the xrays to load. Once he saw one of her xrays from November he decided that it might be something other than perthes.  He told us to come back in six months and then later said to make our next appointment in March... I am not really sure what to think or feel right now... I mean he might be right but he might not... I can't wait tell we go to Baltimore!! 

 I  just wish he would have done new xrays or even looked at the new ones!! I guess we are still here waiting... After the appointment we had IHop and came home.  Pie slept almost the whole way home.  But it's bed time so I better get going!!

Hangin With Daddy!

Pie Pie and Gage have been spending most of the last two days with their dad! They both think it is great fun being alone with him! He likes to let them do things that I would never let them do!!! If it wasn't for daddy I don't think Gage would be allowed to walk to his friends house without me.. I also loved the break that he gave me!
 Anyways these last two days have been rather uneventful.  Pie has been feeling pretty good.  She keeps asking when she gets to go on the airplane and when will it come pick us up!?!  I am glad she is still excited.  It should make things easier when it comes time to go! I wish Gage would feel the same way! He has started to ask if I will be scared or if he will! I think he is a little nervous!!
But I don't think these appointments could come at a better time! Pie has always been a little knock kneed but they seem to be getting worse.  I am not sure if this is because of the Perthes or if there is something else going on. I know she walks on her tip toes from time to time and that seems to be related to the Perthes. However, I am still a little taken back by her knees! Hope we find something out on Tuesday (and if not we will be going to Baltimore on the 12th)!!!! 

Another Day...



Pie's new bones



Playing with the puppies!!



 Pie Pie was so lucky she got to ride Sparkles today when the sun came out! I hope the rain will stay away for awhile!! She was also given an appointment by a doctor in Grand Forks.  I don't feel very confident with this appointment though.  It is with the same doctor that her old doctor was talking to.  I don't know that this will even be worth my gas to get us there but it might be the best thing! I am trying VERY hard to keep a positive attitude about all of this but it is getting a little harder... Anyways! That appointment is next Tuesday so luckily I won't have to wait long to see how I feel about this doctor!!! But I better get everyone off to bed it has been a long day!!!

Some Good and Bad News

Well we got some good news yesterday! We got an appointment in Baltimore on July 14th. We also lined up our flight, hotel and rental car. Pie Pie keeps telling everyone we get to go on a plane to see her doctor in Balteee more! LOL!! She is SO cute! Gage is also really excited too! He just found out we are thinking about going to Washington DC while we are there! 
Today the bad news came... Our insurance denied Pie Pie to go out of state! This means that we will still see the doctor in Baltimore but after that appointment Pie doesn't have a doctor to go to for her Perthes. We have to wait and see what our primary doctor says tomorrow.  I plan on trying to find out what all our options are.. I guess tomorrow will be another long day on the phone for me!

Good Times

Friday was lots of fun, Pie and I went to rummage sales without the boys! She found all kinds of little toys. I found her some cute little dresses and some beading things for me! However, a lot of Friday was spent on the phone. I found out our insurance has not gone through yet. Which means our appointment in MN is still up in the air.  We are now hoping to hear back from the insurance people by Tuesday so I can try to line up a new appointment in MN. I am also working on getting Pie Pie to Baltimore.  I had stopped for a while due to some messed up comunications! I am hoping to hear back from Baltimore on Monday!  Anyways, getting back to the weekend... Friday night we stayed in town and had a tiny little bon fire! We had smores and told ghost stories. Pie Pie was sitting on my lap scared before the first story was done!

Pie spent some of Saturday with her grandma! They had a great time coloring! Then we all got ready and left for the farm. It was raining when we got there, so we decided to make supper and sit around chatting the evening away! When today finally came I got up and made breakfast for the dads! Pie and Gage got lucky and I let them sleep in!! After breakfast Pie, Gage and I cleaned out daddy's blazer since we made it a mess! Then we petted puppies and played a little slow soccer!

The highlight of the day had to be the visit to the old highway! Gage and Pie Pie played in the water while the rest of us watched! I was really suprised Pie got as wet as she did since the water was really chilly. Normally she doesn't like to be cold at all! I just hope she didn't out do herself today!

After we got back people were waiting to look at mom's puppies.  As my mom and I talked to them, Pie Pie and everyone else started a little fire! The neat thing about talking to the puppy people was that they have a relative that had perthes as a child! I gave my number and email to her to pass on to her relative, I am kind of looking forward to hearing from them! Well, I better get off of here and put Pie in bed!

Keeping Busy

On Monday Pie Pie was a wonderful little helper! She helped clean the horse barn, chicken coop and pet puppies. Pie thought the whole thing was a big game! We finished the work time and played play-do and rode Sparkles.  Thankfully, Tuesday was rainy since it gave Pie Pie a good day of rest. She never complained of much pain but I knew she was really getting sore. 

Wednesday was fun! Pie helped grandma wash a chicken then we painted the chickens toe nails! After that we all made some rhubarb cake and snacked on the raw rhubarb while we waited! It is amazing all the things you can do that don't involve any high impact activity. 

Today we spent the day in Bismarck!  We weren't planning on it but the farmers around us thought it would be fun to share their weed killers!  Talk about sickening! We spent the day shopping and looking at the flood.  Pie Pie really liked having a picnic and visiting the library.  Gage and I played checkers while Pie gave us each our pieces back on the board! What a long game that turned out to be! After that Pie Pie went to see her daddy who had been out of town working all week! Gage and I continued to shop with grandma for a while. We all met up with daddy after awhile and decided to stay in town. I got on the computer as fast as I could to talk with Dr. Standard on his chat.  I was just in time and found that the whole first appointment will be free.  I plan to call tomorrow and line up the appointment. I also have to call and check on the insurance for her appointment on the 20th.  I hope she gets approved by then but if not we will have to wait a while longer for her MN appointment.  Pie Pie finished her night by playing a while and then took a long bath. She even put some curlers in her hair! She is a little diva! I pray tonight goes well and that the insurance will have made their decision by tomorrow!

Still Doing Really Good!!

Pie partied with all of us on her grandpa's birthday. We went out to eat, looked at the spillway, and had cake and ice cream. Then she slept through that night then played most of yesterday! Pie even rode Sparkles and looked completely confident! Pie did have a little Tylenol last night and wanted her ice pack but other than that she was great! I think if we wouldn't have had a monster thunderstorm she would have been good last night too! She is now watching Scooby Doo with her brother and cousin but wants to know when they get to go play!! Good thing she doesn't know the difference between play and work yet! But I am so glad she feels good! Now I just have to make sure she still doesn't over do it and keeps up on her PT!

Feeling Better!!

Pie seems to be feeling much better! She slept all last night without getting up even once.  Then I never heard her complain at all today! She did hang out with her aunt most of today but even auntie says it went well.  I just keep hoping that the pain stays away forever now! I am sure it will come back sometime but maybe not for a long time! Pie is sleeping peacefully now! With any luck she will sleep the rest of the night and wake up ready to party for grandpa's birthday!!

Yuck!

Pie Pie seems to be the lucky member of our family today! Everyone else has managed to get pink eye!  We left our new little home to come to town so that we could get some eye drops.  When we were finishing up, the clinic that we were standing in called and told me they had Pie's records all ready for me.  Talk about great timing!! I am glad that I can worry about one less thing. Now all I have to do is wait on an email response and insurance! Not to bad at all! Pie Pie has also had a rather good day today too! I figure tonight should go well for her too! She took a long bubble bath and got some good "swimming" time in the tub!! And I hope that tomorrow she will get to ride Midget or Sparkles. She misses both of them very much!! Well I guess we will see...

Phone Calls!!!

Wow, the phone has hardly stopped ringing!! Between yesterday and today I have been on the phone for more then seven hours! I wish this stuff was easier to get done! I hate being the annoying person who calls over and over again! But I know it has to be done to make sure Pie will get the best help possible.  And Pie Pie and Gage are being really good about being quiet while I am on the phone! I just wish that each call didn't make me second guess the call before it! For example, I was told Pie has an appointment on June 20th in MN but I am not even sure if we are going that day because the insurance can take up to three weeks to approve the referral! To top that off they might not approve us at all! Which has me questioning what I should and need to do about the Baltimore appointment... BLAH!!
Anyways, Pie Pie had a hard night on Sunday that continued into Monday morning. She was able to walk alone without complaining around 10 a.m. on Monday! I think it helped taking her on an hour long car ride! It forced her to stay off her legs! I also think she was happy to see that our house has not been effected by the flood as of now. I know that helped me out a lot! Pie Pie and I spent most of yesterday in the car running errands and looking at the flood.  Gage decided that he wasn't going to stay with us and he took a much needed break by hanging out with one of our close family friends! We ended yesterday with a huge bon fire, games and petting Fuzzy Butt, the bunny! I think Pie Pie liked the guessing games the most! She kept "helping" by telling the answers! We all had a great time! I wish I could say the over night went as well as that but for some reason around 2 a.m. Pie was back up screaming in pain! I used a heat pack on her and gave her Tylenol before bed.  I used the heat again and gave her some ibuprofen at 2 a.m. while she was crying.  It took almost an hour for it to work.  I am glad that she woke up feeling better and has only small complaints today! Hope this keeps up and gets better! Well off to make the dog happy and do Pie's home PT!

The Weekend



Pie Pie is Sick of Pictures!!



Friday went great! I called Dr. S's secretary and she did get back to me.  However, I wasn't sure when to make the appointment so she has to call me back still.  I really hope she gets back to us on Monday! I figure I will call just to make sure that we get the appointment made tomorrow. I think the sooner we have dates set the easier it will be to find some help for the flight there!

The other exciting thing about Friday was that we moved into a little camper! We don't have Internet out there so it is a little harder to get online but it will all work out! Friday night was also the only night Pie Pie slept through most of the night in a while!! I thought her pain was gone for a while but it started to come back tonight.  I hope that by riding the new horse, Sparkles, Pie Pie won't have any pain. Sparkles is the new horse on my mom's farm! Pie Pie loves her and Midget now! She thinks she is really lucky to have two horses!
If riding Sparkles didn't help I hope that the little soak in the tub did! I guess we will find out!

All I Can Say Is WOW!!

I started today off really discouraged! Pie Pie was really stiff and super crabby! Our doctor appointment wasn't one of the best and we were just overwhelmed! We had an appointment at the WIC office and we let off a little steam on them! Good thing they like us! After that I spent most of the day on the phone trying to get all of Pie Pie's medical records and line up the Dr appointment that we might not get until November!?! I thought it would be smart to make the doctor refer me to another doctor in the same clinic! I felt that one might be more qualified and her waiting list seems to agree! Luckily our whole day turned around thanks to a chat with a wonderful doctor! The online chat with Dr. Shawn Standard started out really scary! I felt like a teenager in a new school or something! But I soon realized that the people I came to know through the perthes support group on face book were also on the people on the chat! It was amazing how much it helped me feel at peace! After showing Pie Pie's latest x-ray's to Dr. Standard he had asked what her growth percentile was.  I guess sometimes bilateral perthes is misdiagnosed and could be another bone issue.  However he does think that it is still perthes! He also offered to look at Kadence in his office in Baltimore for free! I still have to figure out how to get there and the hotel but I am calling tomorrow to set up the appointment! This will be the first time someone will see us and they will not only know what perthes is but they have treated it too! OH and to top off this wonderful night I have made several friends with other parents of children with perthes and one is even trying to help me get free tickets to Baltimore! I feel like everything is going to work out and my little Pie will be all better someday! It feels like floating on cloud nine! I just hope Pie Pie does too!!

The Appointment...




The hip bones are still deteriorating. This is a stage that seems to have no end! I still have no cut and dry answers though. I even decided to ask our doctor some of the questions I would like answered and the great doctor decided that we needed to see someone else.  We were referred to a specialist in Minnatonka, MN. The new doc doesn't have an opening until August but they are trying to work her in much faster. It won't be until Friday or even Monday tell we have a day set.  I also had lots of calls that needed to be made after that decision was made. I had to deal with insurance, appointment scheduling, and getting a hard copy of all her xrays. I am some what floored still.  It took three hours to be told "All I know is that she has Perthes.  Age is on her side but her Perthes is really severe. I am going to refer you to..." Oh and we did the xrays! Pie Pie was such a trooper! She got up on the table and didn't even seem scared at all! She even got four stickers!



 A Normal Ball Joint



Kadence's X-rays (both hips)





 



                                            











After the appointment that seemed to have no end, we went out to see Midget and relieve some stress! We love going to see Midget and this time was extra exciting! When we got there Pie Pie's big brother Gage had just rolled on a four wheeler! Luckily he only had a few little cuts and thank God he wore his helmet!! I guess his head bounced off the ground! Freaky!!  It was also exciting because two of Pie Pie and Gage's friends that we haven't seen in a long time were out there too! Hopefully, a nice bike ride before PT and bed will help all of us feel as happy as Pie Pie does! She never seems to let her Perthes take her joy of life away!







Poor Midget!

We never got to see Midget.  It was cold, windy and rainy all day! I am hoping the horrible wind that the weather man was talking about stays away for a while tomorrow so we can go see Midget.  Pie Pie was really sad that we couldn't go.  She is fighting sleep right now trying to be a normal three year old! Her doctor appointment is coming up soon and I told her that we get to see her bones again! She was a little scared about it and honestly I am too. The doctor told us at her last appointment that she will be having xrays and a MRI. I think because of her age they might have to put her under to do the MRI but we wont know anything for another two days! She is also at the stage in her Perthes where her joint can collapse.  I am not sure what that really means for Pie Pie but we will figure it out as it all comes at us!  We will just have to keep praying!

More Tears

Last night was another one of Pie Pie's long nights.  She cried on and off all night.  Ibuprofen and icing it didn't seem to help at all.  I wish June 1st would hurry up and get here!! I am hoping that the doctor will be able to help her more with her pain.  I don't know how normal it is for Perthes kids to be having the amount of pain she is having. Some times the pain seems to be gone and other times I feel like I should take her to the ER! I just keep praying that the appointment will be full of helpful info!! I also hope that tomorrows rid on Midget will help with her pain and with some of the stress! I guess we will find that out tomorrow!

What A Week!

Thanks to the possible flood our family has up and moved out of our home! We are staying with family but plan to camp through most of the six to eight week flood. We just bought Pie Pie her very own toddler cot to make it a little easier on her back and hips. Pie Pie has had some highs and lows during the week.  I am not sure if it is from pain or stress, maybe it is from both.... Since, she is only three sometimes it gets a little hard to tell. She has fought me doing her PT and even doing normal back and leg rubs. She has been crying from pain even when others are around to play with.  This makes me think that the pain might be worse than normal. I am very glad she has an appointment on the first with her Dr..  

Pie Pie is also sad because she has not gotten to see Midget since Monday! Pie Pie cried when Thursday came and went without seeing Midget. I am hoping that I can get her down to Midget this Monday so that she isn't so sad! I also think that it might help easy some of the stress for all of us!

The Weekend and Today

The night with her cousin went wonderfully! The rest of the weekend went well too. By some miracle Pie Pie only complained of pain a few times the whole weekend! She felt so good that she even rode a little motorcycle with dad, went to a few rummage sales and played croquet! She even did her physical therapy (PT) without much of a fight!! I think that was the most shocking. All in all it was a great weekend!

Today, when Pie Pie woke up all she wanted was to go see Midget! She wanted to stop first and get her pony some apples! I love to see her so excited for something that is good for her.  We ended up riding Midget for about 25 minutes.  Pie finally gave Midget a hug and told her thank you! We ended up leaving shortly after that and on the ride home all Pie Pie talked about was how fun it is to ride Midget.  I don't think she talked about anything but Midget! When we got home we did her PT but she wasn't really in the mood for it! It was a rather good fight she put up! I ended up making a deal with her.  Our little deal was if she did her PT she would be able to ride her bike after her brother got home! Thankfully this worked! I even got to use the same deal for the PT that afternoon! Pie thought it was well worth it though when she was riding away on her little bike! I think she may have over done it though since she came in complaining of being sore.  She got a warm bath, some ibuprofen and an ice pack.  I am hoping that it will help her sleep tonight! So far it hasn't done much but we will see!

Finding More Help

Today was very eventful with finding more information on different programs in my area! A close family friend of mine told me about a program called Family Voices of North Dakota.  This site was loaded with wonderful information about different programs around to help parents with special need children. A lady ended up calling me from this program and told me about different things I might want to look into for Pie Pie.  She even told me she would look for another family in North Dakota that had Perthes! She wasn't sure if she would find anyone else but it is worth a shot! I feel like this information was a huge step in the right direction!
Pie Pie also had an eventful day full of friends, family and church! She was sore on and off all day but she never let that stop her! She is so excited to be having a sleep over with her cousin! Hopefully the night will run smooth!

Another Long Night

So for the last few nights Pie Pie has been having a really hard time sleeping.  She goes to sleep alright but gets woken up by pain.  She seems to have the pain in both legs, hips, back, and her tummy.  I haven't had her complain about her tummy for several months but that was part of her cries last night. When she was first placed on restrictions she had a hard time with constipation so we added more fiber to her diet and it seemed to go away. I still don't know why she complained of pain in her tummy but we called our doctor and moved her appointment up to June 1st.  Hopefully he will be able to shine a little more light on the whole situation. Pie Pie has been keeping high spirits through all of this! She especially likes her time riding her pony, Midget.  Midget belongs to one of our close friends but he allows us to come out riding whenever we want. I have been taking Pie Pie to see Midget for about two weeks now. She rides Midget for about twenty minutes, twice a week.  This makes Pie Pie not only feel like she has something special to do but it gives her something to make up for the things she can't do.  This time on Midget also seems to be helping with her range of motion (ROM) and her pain during the day. I do have to admit it also seems to be therapeutic for me as well. Watching Pie Pie get comfortable with Midget by brushing and feeding him has really been a beautiful experience for me.  Also, it makes me hopeful that we will have a good nights rest tonight!