Daddy Doctor

On Father's Day I would like to say thank you to my hubby. Someone needs to do it and he is the one that questions and verifies he understands what is being prescribed and done, etc. in the medical world to the extent one of Dr. Scott's nurses nicknamed him "Daddy Doctor". He verifies medicine dispensing machines are programmed correctly and are on. He verifies total dosing in a day is within safe limits. We have had very positive experiences with the medical professionals but it's also nice to know they will be on top of their game because they know they are being watched closely and they will have to explain what they are doing and why.

He is also the one that has been doing the bulk of caring for Mary since I went back to work 20 days after Mary's surgery. I know from when I was home he is right. The days are a blur and all you do are the basics: make sure she is fed, entertained, fight with her throughout the day to squeeze in 4 sessions of Physical Therapy, and turn the struts to lengthen her leg. This of course is in addition to taking care of our little one (and the dog).

I try to do the Physical Therapy and turn the struts to lengthen when I am home on the weekends etc.. I was also able to take Friday off to give him an early Father's Day present. A day all to himself. He had from 9:15 to 4:15 and he went on a hike to celebrate. As with any caregiver it is important to somehow find time to take a break so they take care of themselves. It will be a long summer for both Daddy and Mary. They will both need a break from each other when possible.

We work well as a team. I am the softee and he is the one that pushes. Mary won't appreciate it at the time but he will make sure she is doing what she needs to do for her body.

For Father's Day we went out to eat for the 1st time with Mary in an external fixator. It was a small lunch place. We were the only ones in the restaurant at the time and it went well. Then we went to the library to sign up for the summer reading program. Mary zipped around the library in her wheelchair by herself and used her walker to walk to the car after checking out her books. Sarah took the opportunity to swipe a ride in the wheelchair.

Mary walking to the car at the Library




 

Dance Recital

Today was the girls dance recital. It was a lot of fun.

I can't thank the Director enough for being so open to letting Mary be on stage and for letting her hang out with me in the audience for the first 2 parts and go back stage for just the last part that included her dance.

In the audience prior to going back stage to dance

I am so impressed with the young lady that volunteered on the spot to be Mary's "driver" when I was discussing the possibility of Mary being in the recital with the Director. The young lady was very generous to offer because she was already in 10 of the 24 dances. Participating in Mary's made 11 dances. She was a very busy dancer but she is a beautiful dancer so it was a treat to see her dance.

Mary and her "driver" on stage during the rehearsal

I am also thankful to the kids (and parents) in Mary's class to being genuinely supportive of Mary's participation.

I want to thank another young lady that is a family friend that helped with coordinating Mary's backstage time and taking care of Little Sister during a loose tooth scare.

I have heard that this specific dance studio is a very supportive environment with really neat kids and I have to say I experienced it over and over again during the rehearsal and recital. Parents, Dancers, and Teachers were so supportive of Mary and generous in many ways to make it happen.

One young dancer told me yesterday that she had an external fixtor a couple of years ago because she fell off a ledge and Mary was so brave because she wouldn't even leave her house for the 1st month. When I was "parking" Mary on the side stage to wait for her dance an older dancer told me they would take care of her. The 3 and 4 year old dancers all made Mary cards while she was backstage. Etc., Etc. People are good!

And of course, I want to thank our family that came and watched the girls dance and all of the friends and family that gave the girls flowers.

Physical Therapy: 3rd outpatient visit

Today Mary had her 3rd Outpatient Physical Therapy visit. It was with the Therapist we had at our first appointment.  Unfortunately the pin site infection and probably the natural tightness that comes with the lengthening has taken a toll. 

• Our number one focus in PT is getting Mary to straighten her leg as much as possible. Totally straight is 0 degrees. Dr. Scott wants anything from negative 10 to 0. If it's more than negative 10 he is going to make us pause lengthening.
• The measurements are not precise and vary by the person measuring. 1st visit = negative 15, 2nd visit = negative 9, and today he measured negative 20. Again probably not precise but we definitely went backwards.

• He also mentioned her toes seem tighter. We have been working on straightening them out vs. the curling from the wire through her tendon. I was very surprised he thought they are tighter.

We learned a couple of new exercises to add into the rotation:

• lay on her tummy with a towel under her knee and let the hamstring stretch

• gently rub a towel on her left leg to help prevent it from getting super sensitive to touch
• push down on her quad right above her left knee to straighten her leg, gently rocking it back and forth = hold for a minute

• every time she stands up she should put her left foot flat on the ground and straighten her leg (hold for 10, 3 reps)

At one point the Therapist said you could do PT with Mary all day! We typically get in 5 sessions a day. It is amazing how fast the day goes when you are home with her.

He worked Mary hard today. I gave Mary Tylenol before PT as recommended, in the afternoon and before bed since he worked her so hard.

As Mary was walking to leave he was watching her walk with the walker. I asked what he was looking at and he said he was just watching. I pointed out how she turns her right foot in when she walks and he said "Mary, you and I will be friends for a long time." Meaning we have a lot of work ahead of us...

He also busted Mary because she has been using the pad on the wheechair that supports your calf as a foot rest meaning she is bending her knee all of the time vs. keeping her leg straight. She is going to love us nagging her about that :-)

Unplanned "Wiggle" Procedure is Scheduled

We are scheduled for what Mary and her Daddy are now calling her "wiggle" procedure for Tuesday at a different facility than we usually go to. Dr. Scott wants to do it next week and scheduled it at the location he could find time in an Operating Room.

Since the hardware holding the top ring in place came loose and allowed the top ring to "wiggle" Dr. Scott wants to put Mary under anesthesia so he can verify the top ring is correctly aligned. While he is doing it he will also do some intensive PT on her knee. It's amazing how quick (in just a day) her knee tightened up while her leg was so tender from her first infection making her not wanting to move it again.

The facility is actually much nicer than the one we usually go to but we are comfortable with the "normal" one. It becomes your second home. Mary and I looked on the new facilities website tonight and surprisingly she quickly adapted to the idea (unlike last night when we were discussing the possibility). Tonight she said she just cares that it will be Dr. Scott she doesn't care where it is done. I felt better after reading they actually have a specific pediatric unit. Her Daddy has taught me to be paranoid about risk of x-rays and anesthesia. I was happy to read they specifically advertise that  they use lower dose x-rays etc. for children. I feel better that they have pediatric anesthesiologists that won't be overdosing my kid.

The procedure should take 20 minutes total but the OR is scheduled for the minimum of 45 minutes. I am bummed about the fasting and general anesthesia for such a minor procedure but as long as it is successful...

Update after unscheduled appt.

Well today was certainly an interesting appointment. We explained some hardware was loose and we suspected Mary had an infection.

• Dr. Scott examined Mary and confirmed based on the redness and additional tenderness it did appear that an infection was brewing. He confirmed it is important to keep the area clean so the bacteria doesn't grow. Mary probably didn't like that because the cleanings are really painful when it's infected. So we received a prescription for an antibiotic. Unlike a normal RX where it is important to complete the antibiotic even once you feel better, our instructions are to take it until she does feel better then stop. He is guessing about 4 days. Since we have months to go you don't want to build up a resistance to the antibiotic so soon.
• He also swapped out the piece that had become loose on Sunday on the top 2 pin sites. (I will add a picture later.)
• He confirmed using Babybel Cheese Wax was a good solution for covering the ends of broken wires. :-)

Remember this picture

• Mary also had an orthodontist appointment today and the Orthodontist helped trim her broken wire since Daddy hasn't had time to go buy wire cutters. Pretty funny!
• Mary had an X-Ray to confirm there were no problems with her femur and/or knee as a result of the loose hardware.

X-Ray of thigh

• The great news is it looks like we are at 3 cm. If everything was precise we should be at 3 cm. on Friday, June 15 so we may be ahead  a few days! AND the bone looks VERY straight and filling in well. YEAH!!!

1st X-Ray after surgery on May 22



X-Ray on May 29 confirming 1 cm!



X-Ray on June 12 confirming 3 cm!

• So the 2 cm. cake her cousins gave her this weekend was well deserved!

• He did remind us that we will most likely need to take breaks from lengthening at times since things start to get really tight.
• We got our second RX for the daily lengthening. It should get us to 6 cm. if all goes well.

The 2 unexpected items were:

• Dr. Scott wants to do a minor procedure next week once he finds some Operating Room time. He wants to put Mary under to check the upper hardware is still correctly aligned and to stretch her knee because it is pretty tight. The whole procedure should take 20 minutes.
• Also he will no longer have an office at Children's where he has been for the 9 years we have known him. He will be down the street at a medical office. So we will see him and have X-Rays at the new office. Procedures will still be done at Children's or John Muir depending on schedules.

Mary got upset at the end of the appointment which threw Dr. Scott because she has been amazing through this whole process so far. Her Daddy was able to talk to her afterwards about it and she was upset about the term "knock her out" vs. the term put in a "medical sleep" that we have been using. But she was even more upset about him moving offices. My girl doesn't like change.

To be honest her parents were a little surprised too but since he is still covered by our insurance and procedures will still be at facilities that work with children they are OK now. :-)

It was also weird for me last night and this morning because Mary wants help again moving her leg (e.g. up and down the stairs) like initially since her quad is so tender.

We are going to go back on Tylenol for the tenderness from the infection and the Physical Therapist suggests it prior to PT too since it is a strain on everything. Mary has not been a fan of the PT we have to do throughout the day.

We are still scheduled to see him next Tuesday but I assume that may be cancelled. We are waiting to hear when he can do the procedure.

Infection or sore from loose hardware???

We are going to our first unplanned doctors appointment tomorrow. During Mary's shower and pin site cleaning on Sunday Daddy noticed the piece that had the loose nut and screw was now sliding loose up and down the pins and the top ring wiggled. The pins themselves seemed securing in place in the bone. He tightened it up again but her thigh was more sensitive than normal and had some thicker leakage. We cleaned it a second time. The before and after pictures are below- you may not want to look. I had trouble looking myself and I am sure it's a mild case.

We called Dr. Scott and will see him Tuesday morning. On Monday, Mary was feeling fine but her leg was more sensitive and the cleaning was more painful. She says her muscle feels bruised and by the end of the night was wanting to move it less and less. For example, she asked me to help her up the stairs like we used to have to do. I think her quad is swollen. We aren't sure if the loose hardware is affecting her or if it's her first infection...

Week 4: Close up Pin and Wire photos

Documenting how Mary's pin sites and wires look at week 4. We think one is infected.

Pins in thigh (least favorite and may currently be infected)



Pins in top of lower leg



Pins in bottom of lower leg

Wires in inside of foot

Wires in outside of foot



Wire- outside of second ring
Her leg is getting hairy like I saw with other kids






Wire - outside near 3rd ring