Lovely Weather

So much has happened in the last 3 months. It is wonderful being back in Green Bay. I think the kids are getting too comfortable at Grandma's house. They will be in major shock when they are back to reality and we no longer live here. Can you say SPOILED children.

Since our move, Andrew hasn't needed pain meds very often. Maybe once a week. The bad news is that lately he has been limping really bad whenever he walks. I think that has to do with his activity level. As hard as we try to limit his "running" we are not doing a very good job at stopping him. At least he listens to his teachers at school when they say no running. He also has started to complain about ankle pain, which I think might have to do with how he walks to avoid causing pain in his bad hip. Not sure, but hopefully that pain goes away. He has been waking up at least 3 nights a week crying about not being able to sleep. I again am guessing that his has to do with pain, but Andrew never really says exactly what is wrong. The only complaint Andrew really has is that he can't do everything that his friends can do, but he still does most of it. I don't know many 7 year olds that can takes things as they come like Andrew does. His next appointment is in February, so we have a long time to wait til then.

Keep your fingers crossed that one of these days our house sells so we can look for a house here. Hate paying mortgage on an empty house.

If I don't post again before Christmas..... Happy Holidays!!!!

Lots of changes...

There have been a lot of changes since my last post....house up for sale (anyone want to buy one in Waukesha?), no job for me, new school, new town, new job for Shawn (not starting til the 15th of Nov.). Life is great.

Right now we are going to be living with my parents until our house sells. So far, so good!! Thanks mom and dad for helping us out. It will be hard to leave, built in babysitters, always having someone to talk to, shopping partner (Sorry Shawn and dad!!!). Gotta love it. We have it so good we may never leave!

Andrew has been really good for the last two months. It is amazing how much taking away stairs at school and home has helped. We have had a rough last week with pain meds, but that is to be expected because Andrew is no longer listening to the no running and no jumping rule. 6 months was enough for him. Little does he know it will be another few years, if all goes well before he can be a "normal" kid again. We can only hope he starts listening again or things will get tough.

As soon as we are settled into our new life, I will fill everyone in more. Please keep your fingers crossed that we can sell our house soon! The house will be empty very soon.

Next appointment set!

Now we are back to the waiting game. We scheduled Andrew's appointment, begin the countdown til Feb 7th. It stinks waiting so long, but it is what it is.

Since the wonderful news we got at Andrew's appointment last week we thought all was good.  He had a great week, only pain meds once. That was until we lightened up too much last night. A few neighbors came over and we didn't restrict Andrew like we should have. He had a blast, he was up and down the stairs, not really running, but almost, playing and having the best time. He seemed fine and who can blame us for not stopping him! Andrew is 6 and should be able to act like a 6 year old sometimes. Then 9:30 came around and he was in pain and upset. Morning came and he crawled up the stairs because it hurt too bad. We really thought the good news of regrowth meant things would get easier. Keeping our fingers crossed that Andrew can get through this quickly.

additional info

What I did not put in yesterdays post is that yes regrowth is wonderful news but... he still has the long road to recovery. Now that regrowth has started, we have to keep Andrew swimming and biking to keep the ball regrowing correctly. This can be a tough stage for some kids. This stage if I understand correctly can take years and there still can be a lot of complications. We are keeping only positive thoughts that Andrew will have none of those complications.

Doctor Appointment

As everyone knows Andrew had an appointment with the Specialist today. It started off very frustrating. Our surgeon was called away for an emergency surgery, so he was not there. The assistant who was in his place originally told us bad news, looks like there is a little change with slightly more flattening to the ball. But she was very uncertain with her answers, then said it might not be Perthes Disease. What !?!?! was our first reaction, if it isn't Perthes, what is it? At that point I asked when the Doctor might be available to speak to. After a few minutes we were told that the doctor was finishing up the surgery and would be up to talk to us in a half hour. So we waited and waited. Finally we got to talk to the doctor.

YAY!!!!! We have very slight bone growth in the femoral head. That is wonderful news and the best news we could have heard. We still need to continue to be strict on his restrictions because we are far from being out of the woods and we still may have some bumps in the road (big and small) but as of right now we are thrilled. Our being strict has paid off, telling our 6 year old no running, jumping, etc. is helping and he is not worse off. The pain is still there and will continue to be throughout the entire process. We are going to switch to Aleve for pain, hopefully it will be a little easier on his tummy. We feel like a ton of bricks has been lifted off our shoulders. Please continue to keep Andrew in your prayers, we still have a long road to full recovery, but at least it appears to be shorter than it could have been. Next appointment is not for 6 months, until that time he is still restricted from physical activities other than swimming/biking/walking and we are continuing to do things the same as we have for the last 4 months.

Ready for a glass of wine and NOTHING tonight.

Longtime no post!

Well it has been another crazy month in the Gehm household. Summer is just flying by. Nothing new or interesting to post regarding Andrew's hip. He is doing ok, not any really bad days, just pain most of the time. He just got over pneumonia, which was not fun, but he is just fine and back to swimming whenever given the opportunity. Nathan is enjoying tball and lots of time with his brother.

I am sure I will have more in the next weeks, so check in then. Aug 2, next appt. keeping our fingers crossed.

June is almost gone!

It has been a great last few weeks of June. Where did the time go?  Camp Quad, new friends, lots of swimming, new hair cut (yes he got a mohawk - he wanted it so why not). Very little time to stop and think. Nathan is loving having his brother around more, lots more for him to do. Andrew has had to use very little pain meds to help control the pain for almost 2 weeks. He has been sleeping good and feeling good. That was then and this is now. Now the pain is back, but not just for his hip, but also his knee. Because his hip hurts when he walks, he has changed how he is walking and his knee is hurting constantly. This is common for kids with Perthes. Unfortunately Andrew was up almost all last night crying in pain.  Good news is he doesn't remember much of it -nor does daddy. Bad news is I am so tired I almost walked into a wall. Just picked him up from camp, ate lunch, now time for a good long nap for both of us.

Only 1 month until his next set of X-rays. Keep your fingers crossed!

Happy 4th to everyone.

Schools out!!!

Andrew is now a 1st Grader! Where did the time go. As much as he loved school, his friends and teachers, school ended at a good time. The year ended tough for Andrew. Tuesday was "fun" day at school and was emotionally too much for him. He said he was sick, but it wasn't in his tummy like he said. It was out of frustration and sadness that he wanted to leave. He was tired of watching his friends being able to run around and have a good time and he just gets to sit and watch. In his words, this hip is making things boring. After a set of tears and a good talk from daddy. He was back at school to finish fun day and enjoy time with his friends. He came home happy and with little pain. Wednesday was the last day of school and was bitter sweet. Now he has to be stuck at home with mommy more of the time. Tough life!

Andrew is a trooper and the mental aspect is coming into play a lot earlier than we expected. Other kids and parents truly do not get it that Andrew wants to play with the other kids. When he is playing it always turns into something that he can't do. This is really hard for Andrew to understand why other kids don't won't just do something that he can do for more than 5 minutes. We are not being rude, I am looking out for my son when we leave and go and do something that he can do. Please mom's and dad's don't tell me he looks fine and tell me to loosen up a little he is just a kid. Really!!! No, he doesn't have a brace, cast, crutches or wheelchair and hopefully he never does, but he is in constant pain, not telling anyone because he doesn't want to be different and it shouldn't have to be obvious for a mom or dad to understand this isn't me being a strict mom. We are following the doctor's orders and doing what is best for Andrew. That is my job as a mom. The less running/damage he does now, the better off he will be down the road. If you can't understand that, I am sorry. Look into Perthes Disease a little more before you say something like that.

Whew...sorry about that, Ok, I am better now, thanks for the listening. Off to another day of who knows what.

A farm, soccer game and piano recital, we need a vacation!

Yet another busy week since my last post. After recovering from the previous week, Memorial Day was spent sitting watching movies and playing the Wii so that he could be ready to go Tuesday. Tuesday Andrew got to go on a field trip with his class to a petting farm. I got to go with and he loved it every minute of. It was a little hilly, which meant a lot of piggy backs, but all in all, not too much pain and a great day. Then nothing too crazy during the week, but another busy weekend for the family.  Wednesday night swimming lessons (Andrew), Thursday soccer practice (Nathan), Friday just craziness....

Saturday, Nathan had his best soccer game yet. He was aggressive and almost scored.  Grandma and Grandpa Gehm came to watch, which made things even better. We were all so very proud of Nathan, next stop for him, TBALL!!!! Starting Tuesday next week....I think?!?!

Sunday was Andrew's first piano recital and he did excellent. He played Star Wars and The Lion Sleeps tonight. We were lucky enough to have Aunt Mary Kay, Grandma Clark and Grandma and Grandpa Gehm come and listen to our little musician in the making. Thanks for coming everyone.

Now it is another week and a new set of pain meds. Even though it wasn't an physically active weekend, it still took its toll on him. He woke up fine, but by early morning his pain was up to a 3.5 (on a scale of 5). Normally he says his pain is a 1 at the most. Now he is better and riding his bike in circles over and over and over again. Waiting for him to get dizzy and tired so I can relax. I could really use some extra sleep tonight.

Memorial weekend

Wow, it has been a busy weekend so far. Started by having a good time with family at Tricia's place. Good luck in St. Louis Tricia!!! Then last night headed home for a very LONG night. Andrew was having such a good time at his aunts that we ignored the "non"-running rule. Last night another set of pain meds and up with pain a lot at night. Today started rough, but after moving around a little he got a little better at church and right after he was good, then downhill from there. After a 3 1/2 hour nap (keep in mind Andrew doesn't take naps), he is up and limping a lot! Andrew is walking as if he only has one shoe on. It is very hard to have so many wonderful days and then a day like today. Both boys wanted to go out and play with the neighbors on a water slide, which was fun for them, but didn't help his limp, so we are going to bed early tonight hoping rest is what he needs. Going to lay low tomorrow, no plans, no activities, maybe a movie or something. Thanks again for everyone's prayers, we really do appreciate it.

Another day :)

Again, nothing really new to tell everyone. Another weekend where Andrew over did it and had a lot of trouble walking by the evening. He is a tough kid, woke up a few times that night from pain, but just fine the next day. Shawn and I did learn that Andrew has decided not to tell us when he is in pain so that he doesn't have to sit out. The little stinker! We had to have a talk with him to reassure him that there is a reason we need to know if it hurts and that we need to be able to tell the doctor how things have changed. Andrew also didn't want to be excluded from somethings at school because of all the stairs. He thinks if he tells his teachers that it hurts, that he might not be able to walk upstairs for music or to go to the library. After our little talk, we think he understands that won't happen. Well, it won't happen as long as he is walking :) Other than that we consider ourselves very lucky for a lot of things and remember the bad comes with all the good.

No news is good news

I haven't updated in a while, but we have no new news, which is good news I guess. He is still doing the same, occasional times where he has trouble walking, but other times where you wouldn't know anything is wrong. I think he is getting use to the pain because I asked him if his hip always hurts or are there times it doesn't, because he doesn't complain. His response was, mommy, it hurts all the time and I don't want to complain all the time. Spoken like a 6 year old. Gotta love it!

Exhausted!

After a very busy weekend Andrew is spent! He had a great weekend with family and friends, but now his hip is paying the price. He is sore and limping like we haven't seen thus far. During stretching today, Shawn did notice that Andrew's ROM (range of motion) is getting worse, not by a lot, but enough that he noticed. Goal is to keep a full range of motion, we will keep stretching him and hoping it doesn't change anymore.

Good Days!

The past 3 days have been really good days for Andrew. No pain meds for 3 days!!!!! Prior to that a night of crying from the pain, so this is a big deal. Still a little pain, but nothing major. The stretches he has been doing have been very helpful. Swimming and biking have been wonderful exercises for him also.

This morning Nathan had his first soccer game while on the field next to us were a number of Andrew's friends playing. It was hard for Andrew to sit on the sidelines while his friends were run around. It is starting to really sink in what he is in for. Keep your fingers crossed that we get a 4th day in a row with no meds.

Thanks everyone for your messages, they are wonderful to read.

The Beginning

Full View

On March 29, 2010 was one of the hardest days we have experienced as parents.

It was this day we decided to make an appointment for Andrew because of a limp that just wouldn't go away. Though he never complained about anything we knew something just wasn't right.

On March 28th Andrew and Nathan were outside playing with a neighbors dog. Very casually I mentioned something to our neighbor about Andrew's limp. Our neighbors comment was something like this... "I don't want to scare you but, my nephews had this disease called Perthes disease and it started with just a limp about the same age as Andrew is (6)." Not too long after coming inside, Andrew was coming down the stairs and just stopped. He was struggling, but still didn't complain, he just figured out that he had to use his good leg first. Of course after this I went to the internet to find out more. The internet is a wonderful but horrible tool at the same time. By the time I was done searching I was sure that Andrew would be fine and the odds were he would not have Perthes disease, but the limp still bothered me.

Monday came around and we got an appointment for that afternoon. It was very quick, we talked to the doctor, she ordered X-rays on his hip and less than a 1/2 hour later we got the news. Standing in the hallway at the doctors office, Andrew's doctor went over the X-rays with us. Pointing to Andrew's right hip Shawn and I both knew from the research the night before what we were looking at. Our doctor explained that she had another patient a few years ago that had it, but other than that she had limited exposure to the disease and recommended a specialist. With her limited exposure she was still very positive it was Legg Calve Perthes Disease (LCPD).

Our next step, immediately limiting Andrew's physical activities. Yeah right! An athletic 6 year old not being able to run, jump and play sports, that is definitely going to be a challenge. The same day, we scheduled an appointment with a Pediatric Orthopedic at Children's Hospital of Milwaukee. The earliest we could get in was Thursday April 1st. Luckily only a few days waiting and searching the internet. Not a fun week, all the possibilities of what could happen and a lot of Kleenex.

On April 1st when we went to the Pediatric Orthopedic appointment, the doctor first talked to Andrew, which I thought this was great. If Andrew didn't feel comfortable it was going to make things a lot tougher. Then came the time for us to talk to him. The first piece of information was be ready for a lot of ups and downs, a lot of frustrating times and ready to not get the answers you want. This is an unpredictable disease in that there are no percentages, no definite time lines, no for sure outcome. 2 kids, exactly the same age, same amount of damage doing the same type of treatment can end up with completely different results. Anyone who knows me knows that I am a huge planner. There is nothing about this that I can plan for! The only thing I knew for sure is that we had to wait, 4 more months until our next appointment and we had to watch Andrew struggle more and more each day.

3 weeks later it has already been a roller coaster ride. Some days Andrew is completely fine, then the next day he struggles to walk. This will be a long road, but we as a family and with the help of all those around us, Andrew will beat this a be an active kid again. This disease is not life threatening nor does it affect his thinking, so we are blessed in that way. God only gives you what you can handle, so I guess we will handle this!

Please check back, every so often Shawn or myself will update this to let everyone know how it is going. Thank you for your love and support, Andrew is truly lucky to have so many who care about him.