Tips

Appetite: Appetite can be suppressed due to pain.

Car:

• Child may not be able to bend their knee at least initially so it can make it difficult to get them in and out of certain cars. We borrowed our friends minivan.
• They may be sensitive to bumps on the road
• Use an upside down trash can and pillows to prop leg if need be

Cause:

• There is no cause for Fibular Hemimelia. it is congenital (NOT genetic) and a complete fluke!

Child Life Specialists:

• Great resource at hospitals that help explain the medical world to children so they understand what is going to be happening and help ease fear. They are very gifted - use them!

Classroom Presentation:

• Let your child prepare and do a presentation for their class to explain what they have and what they will be going through. See ours in Post on  April 14, 2012.

Cleaning Pin Sites: See July 10, 2012 post 

Clothing:

• Clothing (underwear, PJ's, skirts/pants, etc.) must be adjusted- you can't pull anything over an external fixator.
• See the "Adjusting Clothes" tab on the top of the blog for more details and the link on the "Recommended Links" tab

Errands:
Just like when you were about to have a baby:

• go to the grocery store and stock up on food
• get food for pets
• do a Target/Costco run for basics
• Get haircuts,
• Schedule all routine doctors appointments before the fixator goes on

External Fixator:

• Will look bigger than you expect

Hair:

• Leg may grow a lot of hair during the process. A friend that is a doctor said it is a sign of stress. 
• Mary lost a lot of it during the consolidation phase.

Handicap Placard:

• obtain the required form, fill it out and have doctor sign it and date it prior to surgery so you have the placard to use from the time you leave the hospital

Medical Equipment:

• I have been told it takes 24 hours to get Durable Medical Equipment. Our doctors office ordered a wheelchair and walker to be delivered to the hospital the day after the surgery. 
• Before being released we were trying to get a medical bed and bedside commode delivered to our house. I could tell Orthopaedics didn't think it was necessary. We couldn't get them delivered Day 1 so we were forced to try without both for a day and we did survive! We survived because the Physical Therapist taught her how to scoot up stairs and how to use a walker the day we left the hospital.
• Generic Q-tips because they are less fluffy (to clean pin sites). Finding ones with a long handle would be best. We ordered them online at Amazon. You can use the back to pick off any stuck stuff if need be and it allows easier access to clean around the fixator.

Misc. items to have on hand:

• Breakfast in bed tray
• Activities they like, books, movies

Motivation:

• Make a bone chart so everyone can see the progress being made

Bone Chart

Close up- she puts lines through when we think we have reached another cm.

Muscle Atrophy: I was surprised how quickly muscles atrophy. Isometric exercises can help. Having your child flex/squeeze the muscle can help.

Pain Meds:

Can cause nausea and constipation 

Photos:

Take close up photos of the fixator. The hardware (the little nuts, etc.) may come loose and it's nice to have a record of the original position. 

Physical Therapy:

• You will start PT immediately while in the hospital
• First we learned to sit up,
• Then how to get into a wheelchair,
• Use a walker,
• Go up and down curbs while using a walker, and
• How to scoot up stairs.
• We also learned exercises to do at home for the toes (so her toes don't stay curled) and leg (so she can learn to lift the leg with the fixator- until she can, you have to hold it while she moves anywhere.)
• Our first PT RX is for once to twice a week for 6-8 weeks for Range of Motion

Pillows:

• Are great to help position and prop your child. 
• We bought travel size pillows but were able to return them because they toss the pillows in the hospital after you use them so we were able to take them home.
• The pillows are smaller and flatter than a normal pillow so they work great.

Ramp for wheelchair:

• Our good friend proactively offered to make ramps for the steps on our sidewalk for wheelchair access!

Sensitivity: 

• Rubbing a washcloth (or some material) on the area throughout the process will help the leg from being super sensitive when the fixator is removed. 
• Touching (massage) is also helpful. The more you can touch it the better.
• Also a good sign of an infection during the process is if an area becomes sensitive.

Shoes:

• Nordstrom's sells 2 different size shoes for the price of one. They refer to it as a "split pair".
• We had good luck putting her lift on K-Swiss and Adidas tennis shoes.
• The shoes in the pictures on the Background tab happen to be her basketball shoes.
• At times it is challenging because one foot will be in the larger size category and the other one will be in the smaller size category. Often they have similar shoes but with a minor difference so look out.

Showering:

• Hand held shower head
• Good bath mat to prevent slips
• Plastic patio chair for child to sit in and a stool to prop leg 

• It is hard to clean the fixator leg so we found a "champagne flute" cleaner with a wand at Bed Bath and Beyond that works pretty well. The handle and size lets you work around all of the fixator parts for basic soap and water cleaning prior to pin site care.

• Daddy also purchased a suction shower handle that is much more stable than the glass door handle we were using before

• Occupational Therapist also mentioned there is a shower bench you can buy which would make it easier than the set up above. We would have to remove the glass doors.

Siblings:

Proactively make time for them during the whole process

Once sibling tried to cave to Mary because "she has an external fixator" I explained Mary is still Mary and doesn't get everything she wants just because she has an external fixator.

Sleeping:

• Adjustable bed base from Ikea: Sultan Langhus (I HIGHLY recommend this!!!)
• Lots of pillows to help prop body in a comfortable position
• Initially it's just like having a newborn again. Pain Meds are given during the night.

Turning Struts: see July 9, 2012 post.