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!