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!

My First Blog

Hello everyone, My husband and I have decided to share Pie Pie's adventures through Perthes.  For those of you unsure of what Perthes is don't feel bad since it is a rare condition.   "Legg-Calve-Perthes disease is a childhood condition associated with a temporary loss of blood supply to part of the hip joint. Without adequate blood flow, a process can occur in which the bone becomes unstable, and may break easily and heal poorly. " ~ Mayo Clinic.  There is also very little information on what causes this condition.
Pie Pie or Kadence is our three year old daughter.  When she was only eighteen months old, she woke up from a nap and couldn't walk. I took her to doctors and chiropractors.  They thought she might have a cold in her leg and sent me home after taking some xrays. She began to walk about a week later. Throughout the next year and a half Pie Pie would limp and cry from pain. We took her back to the doctor on and off but they thought it might just be growing pains. About a month before her third birthday we took her back to the doctor and requested xrays even though our doctor felt she might be faking it. We got a phone call later that day telling us we had to see the bone and joint specialist.  So five days after she turned three we were told she had Perthes. The specialist seemed to be really shocked by the xrays and told us she had to limit her activities and do physical therapy five times a day. Since then we have been trying to learn all we can about perthes. We have found the most helpful information to come from others stories!  I am part of a support group on Facebook and couldn't imagine life without it.  I have learned and been lifted up by this group! Saying thanks doesn't seem to be enough! We are hoping that Pie Pie's adventures will be able to help others!