What a ride!!

I don't even know where to begin. It's been quite the roller coaster we've been on.

As you know we've been trying to figure out what was wrong with Alex's knee; he started limping in July, progressively got worse and occurred more often, then fell on same knee (hard!) the first part of September. Couldn't (wouldn't?) put ANY weight on it and was confined to a wheelchair for 6 weeks, improved enough to use a walker, with bad leg (right) not touching ground at all for 2 weeks, then walked with the walker's support for 2 weeks. Finally stopped using the walker at all and walked around... it wasn't pretty. He walked like an old man who needs a hip replacement. During this last month we visited a rheumatologist who said they couldn't be certain but she was 99.5% sure he had arthritis, and we needed to get an MRI just to confirm it and see how extensive it was. Had the MRI- and was told no arthritis :) but he had Osgood Schlatter disease which "could cause some discomfort" , so "Alex just needs to buck up, and you need to stop babying him and let him grow up." Yup! The DR. really said that to me! Gave us a prescription for physical therapy because "since you have allowed him to stay in the chair too long, he needs to re-learn to walk the correct way."

Two weeks ago, we saw a physical therapist through Primary Children's and she evaluated Alex. A week later at our second session, she said she had thought of Alex non-stop all week, and talked to other therapists and would like to assess his hip if that was ok with me. Of course, it was OK! I still had that gnawing, momma feeling that there was something wrong, and someone else had the same feeling - let's do it! She asked if I could get a hip x-ray. Got it Friday...

As a parent you're expected to stand in the office part of the room to not be exposed to all the radiation. (I've always thought that was interesting. "Drop your child, who is in pain, on this freezing cold table so we can move his legs around in impossible positions for a healthy person, let alone one who hurts, and we'll blast him with radiation. But, mom, we don't want you to be exposed, so please stand over here.") Anyway. As the picture of his hip is coming up on the computer screen I said to the tech, "I sure wish I could read these things so I knew what was wrong." Then it came on the screen. My heart fell to my feet and I said to the tech, "But I can tell you without any education what is causing him pain!" She looked up from her notes, and said, "Yup! That's pretty obvious, isn't it." (see x-ray below)

The top x-ray is of his right hip alone. The bottom x-ray is sideways, with his left hip on the top and the right one on the bottom. Sorry I couldn't figure out how to flip it, but if you compare the two you can tell the right one (bad one) is definitely different than the left one (good one).

Needless to say I had a rough weekend. How could I let it go so long? I KNEW something was wrong! I had asked for an orthopedic, and they wanted to wait until after we saw the rheumatologist. Why didn't I push it? Why didn't I make a bigger fuss than I did that he WAS in pain, and not faking it? I felt I failed him miserably.

Monday; he went to school, I got a report from the radiologist from Alex's pediatrician so we knew what was wrong, even though it looked pretty much like a broken hip to me, then I took him to physical therapy. His problem is called a "skiffy" which is from Slipped Capital Femoral Epiphysis. I took the x-rays with us, so she could look at them. I told her she may not want to do therapy this week, and since we were seeing the orthopedist Tuesday (the next day) we would know better what to do. She took one look at these and freaked out! She compared them to medical journals and was concerned because Alex's looked so much worse than the pics in the journals!! She asked if it would be ok if she talked to the orthopedic (since she had referred him) and make sure he listened to me, and it was a hip problem, not a knee problem.... again, OF COURSE!!

Walked in the door from therapy and the phone was ringing. The therapist had called the Drs office, they looked at his x-rays online, told her to call us back and instruct me to not let him put anymore weight on it, don't let him eat or drink anything and get him to PCMC emergency room immediately!!!!!!!!! Alex was in surgery 2 hours later. 41/2 hours later, they had put 1 screw in his left (good) hip since he was high risk of it happening to the other side as well, and readjusted his right hip to be in better position then put 2 screws in that side. What happened is the ball of the joint, the growth plate, slipped off the femur. They're pretty sure it started slipping in July and that was why he started to limp, but when he fell it pushed it off even further since it wasn't stable. ALL the drs and nurses that knew what a "skiffy" was was hugely impressed that #1 Alex had been suffering with this for so long, and #2 that he had been walking on it. The orthopedic when he saw the x-ray said, "Holy Cow! Are you kidding me?" This is a pretty common occurrence in people with Down Syndrome, people with hypothyroidism and if it has happened before. So Alex is in 3 high risk categories. Thank goodness he was finally taken care of.

We came home Tuesday afternoon. He has done absolutely fantastic!! Still in pain, but already better than before the surgery. The Dr was pleased with how things looked and only time will tell if he has any nerve damage, or circulation problems because he was injured for so long. They were also pleased with the length of his leg; they don't think it will be much shorter! And still no idea about the growth plate. Just a wait and see.... but I'll take a little shrimpy kid over one in pain anyday!

So... if you ever hear of anyone having knee pain, please have them check their hips! And just to set the story straight; that Dr that told me to let Alex grow up and he needed to buck up? When he heard what happened he sought me out twice in the hospital! The first time was right before the surgery and a lot was going on so I didn't get to talk to him other than introducing him to Mike (and Mike could tell he was the culprit because he was sulking around!) But then he came to Alex's room the next morning, and allowed me to chew him out, agreed and apologized profusely! I have to tell you, that in that 12 hour stretch when the therapist validated my opinion that something was terribly wrong, all the Drs and nurses in the ER and OR were so kind and caring and took great care of Alex, and then when the rheumatologist apologized, I regained hope in the medical profession.

Keep praying to our Heavenly Father so you know you're not alone, and always trust that gut feeling. It's the spirit, and if you follow it you will never go wrong!!

What's up with Al??

So... after the MRI we found out that Alex does not have arthritis!! I think the doctors were shocked, because they made the radiologist look at it twice, and explain things. What they did find is a fissure along the bottom of his growth plate on his thigh bone (right by the knee) which they made sound like it was no big deal. Basically what they said was it "might cause some discomfort", but Alex should just buck up. They suggested another x-ray and physical therapy. The x-ray showed Alex has what is called Osgood Schlatter. Basically it's a bad growing pain - too fast of a growth spurt has caused all the ligaments to be stretched. Much better news than arthritis and physical therapy is the best thing for it.

We met Mary a week later. She had looked at all the doctor's notes and started assessing him. Gave us some exercises to do and made another appointment a week later. She did ask us to go see a Dr. Aoki, an orthopedic that specializes in knees just to cover all our bases, because she was a little worried there was something more going on. The reason for this is how Alex walks; he looks like an old man who has had a hip replacement. When he marches only his left knee can be lifted but not his right. That's a hip bend. Anyway, when we went to therapy this week, she was relieved that we did get an appointment with Dr Aoki (on the 24th) and said she had talked and talked to other therapists because she just felt uneasy with things after we left. She assessed his hip this time, since she concentrated so much on his knee. Now what she's thinking is that maybe he started with the Osgood Schlatter, which is what started the limping, but when he fell she's concerned he damaged his hip somehow and now maybe it has grown improperly.

I'm just so grateful for doctors that listen to their patients, or their parents and try everything they can to figure things out. We will go get another x-ray soon and see Dr Aoki next week. Cross your fingers that IF there is anything else that needs to be found, it will be found.

Alex is getting faster at walking and only seems stiff in the morning. He's getting better!

A funny thing happened on the way to Josh's house...

Let me set the scene;

I'm sitting in the living room feeding Morgan. Taylor is sitting across from me, just chattin and chillin. Alex comes in and says, "I'm going to Josh's!" - - - Now remember, Josh only lives 4 houses away!!

Taylor watches Alex as he gimps his way down our driveway, and heads toward Josh's. She stops in mid-conversation with me and says, "He's stopping what's his name?" (A neighbor that lives on the other side of Josh's house had started down the street in his car) She watches for a minute..... "Now he's getting in his car!!"

Yes, Alex hijacked the neighbor and made him reverse into Josh's driveway so he didn't have to walk all the way!! What a funny guy! Thank goodness for nice and understanding neighbors!