Hard Times

Ever since Mary's knee was immobolized on June 19 it has been very rough. 

As she told me last night, she can't get comfortable at any time. That's hard to hear from your kid. 

I am hoping Tuesday was the tipping point. I was physically and emotional exhausted. To help us all sleep, we started giving Mary the valium she was prescribed but has never taken. It has helped and boy what a difference it makes when you get some sleep!

We have been trying to think of things to look forward to weekly: 4th of July, trip to get ice cream the next week, etc. then I realized it is also important to realize that we are achieving the physical goal. Her curved back looked straighter just a couple of weeks into the process. Last night, I noticed her hips that before we started looked 3 inches different in height, now look almost even!

As I tried to tell myself before we started in May there is always the unexpected. 

• On Tuesday, the screws on her top two pins seemed loose AGAIN but thankfully the bar hadn't pistoned like it had before causing the wiggle procedure on June 19. Dr. Scott advised to put them back in and use locktight to secure them which Daddy did. 

Loose screws creating the space between the square locks








Tightening screws

• On Wednesday her knee started itching. She has had itching periodically through this procedure. Last night the itching was the only thing that woke her up.
• On Wednesday her Daddy realized the strut that was put on to immobilize her knee has adjusted a couple of millimeters allowing her knee to bend a little. Dr. Scott said he didn't like those particular struts called "trauma struts" because they did wiggle more than the usual strut. He said it would be good for her cartilage to flex her knee a little but warned Mary wouldn't be a big fan and he was correct. We are to lock it in place when we are done flexing.

Sunday night was the only night Mary's hip and glute didn't really bother her (but her toes sure did). Her hip and glute are back to being very uncomfortable. I do think that her body is moving to a straighter position and although it doesn't feel good at the moment it will for the rest of her life and that is why we are doing all of this.

We have guesses on when she will get the thigh and foot piece off. Its bittersweet. She can't wait to get it off but the earlier in July we get it off the less length we will get. She has requested we do the removal procedures back at Children's vs. John Muir which means the procedure may be on a Thursday in July. I am not sure she will stick to that if it's hard to get scheduled at Children's and we could do it sooner at John Muir. (I prefer Children's myself so hopefully it will work out.)

We are all counting down to our x-ray and appointment on Friday, July 6 to find out how much length she has gained (it should be 5 cm. which is our minimum goal) and our plan: can we keep lengthening or do we need to stop which is based on Mary's desire (which I think is waning based on how uncomfortable she is now a days) and what her body will physically allow.

I was trying to take a picture of how bad Mary looked one night but she smiled for the camera. I have to admit she looks so different to me in this picture but it could just be that my girl is growing up (pun wasn't intended- honestly).

Progress

• Today I realized we all need to be able to visualize how far we have come so I created a calendar to keep track. I only have the 3 months that involve lengthening up and it's nice to see that we are over half way (approx. 10-30 more days!) through the hardest part. Once we get the length we have another 100-140 days depending on how much length we get but we will focus on that once this first phase is over.

Pink days are hospital days, green days are lengthening days, and white days we didn't lengthen

• Last night was the first night since June 19 (wiggle procedure) that Mary's hip, glutes, and back didn't hurt. We started using Bio-Freeze (what we use on our sore backs) on her so I am not sure if it was the Bio-Freeze or just her body getting adjusted to the new straight leg. Her toes were a totally different story...




Bio-Freeze from chiropractor but rumor is Bed, Bath & Beyond sells it


• Today was a better day for Mary but at dinner she didn't have much of an appetite and ended up with chills: this whole process can be so unpredictable!



Trying to warm up from chills

• Mary confided in me tonight that it's hard seeing her little sister grow up and having to have her Little Sister do things for her because of the fixator. It was a good conversation. We talked about the bitter sweetness of kids growing up.
• We have started using a desk chair for Mary to use at the kitchen table since it can go higher or lower and is more comfortable than the normal chair and her wheel chair plus it can be fun...

The girls going for a ride...

• Mary likes to write and is currently really enjoying a pad she received from her Great Aunt that has an area to draw a picture and an area to write a story.

Aches, Pains, Bruises, and Catch 22

On Friday, Mary had her 4th appointment with her Physical Therapist. Since she can no longer bend her knee, the focus has moved from working on straightening her leg to exercises where she practices walking on her fixator leg and working her glutes.

The toes continue to be a challenge. Prior to the manipulation procedure on Tuesday Mary could pull her toes so they were in line with her foot but just like after getting the fixator on, her toes are curled and she can't pull them up.

Mary is still having a hard time recovering from Tuesday. Her coloring still looks off to me and she has a lot of aches and pains. Her knee is sore during the day and at night she is really sore in her hip, glutes, and back. At night she can't be massaged enough.

Mary still has 2 bad bruises from her IV on Tuesday:



Mary and I have been talking a lot about catch 22 situations.

• Physical Therapy is not fun but its important because it will make her feel better.
• Her body hurts as it learns to be straight but being straight will feel so much better.
• Mary told me she had a dream last night she was walking without a fixator and any apparatuses. I thought it was a happy dream but she told me it wasn't. I guess it was frustrating to her since it was a dream vs. reality.
• And we haven't talked about it but ironically the most comfortable way for her to sleep is on her non-fixator side. She will have scars on her fixator leg from the incisions, pins, and wires. It looks like she may also have marks on her right leg even though she puts a pillow on her right leg for the fixator to rest on:

Marks on non-fixator leg from sleeping on her side

She is once again learning how to do more things independently but the immobilized knee is still very frustrating to her.

Sleep is better than Tuesday night but she still wakes up during the night because she is so uncomfortable.

Daddy fell asleep while reading this afternoon

Mary is really disliking the daily pin site cleanings now because some of them are really painful when cleaned.

We started turning her struts again after taking 3 days off per Dr. Scott. Tomorrow "should be" the 4 cm. mark (1-3 more cm. to go)...

"Happy Knee = Happy Mary"

Mary's quote of the day was "a happy knee makes a happy Mary". 


Last night was better. She was up only 3 times 11:30, 3:30 and 6:15. Two of the three were very short. The longest time was at 3:30 because she was really uncomfortable. Luckily that was Daddy's shift. :-)


She was in better spirits today.


Tonight she was really sore in her left hip, and glutes. Probably from a combination of her body getting used to the new position and the additional leg lifts and side kicks in Physical Therapy. She really likes to be massaged when she is sore. 


I told Mary now she knows what Mommy and Daddy feel like when we say we are sore. I told her since she is almost 10 she is getting old just like us. She disagreed.


She is also stating parts of her leg feel numb. 


The wheelchair had been staying in the car and used only when we are out and about but we brought it back in the house tonight so she could sit at the kitchen table with us for dinner since she can no longer sit in a normal chair with her new straight leg. 


She is curious what Dr. Scott will say when we see him in 2 weeks. (Me too!) I mentioned getting 5 cm vs 7 cm and she said I hope not since we are doing this she wants 7 cm. I showed her the difference on a ruler so she could see 5 cm was a lot and 2 more cm wasn't much more. I told her Dr. Scott straightened her leg for the overall health of her whole leg. We certainly don't want to create problems while trying to achieve length. 


Our good friend who is a doctor confirmed tonight that it is much better to have a straight leg so the ligaments remain straight vs. a bent knee where the ligaments get "short" and it is really hard to get them "long" again. 


She summarized the manipulation procedure on Tuesday well. If she would have had a straight leg from the time she got the fixator put on it would have been better but to get used to having the fixator on and learning how to do things on her own, to be able to sit in a regular chair, etc., then have it taken away was hard. I just said how happy she will be when we get the piece off her thigh and foot and she can move her knee again. That's when she said the quote above "a happy knee makes a happy Mary".

Goals

Last night Mary was up every 1 to 2 hours but tonight she at least fell asleep MUCH easier.

My hubby said today was a bell curve: hard in the morning, better in the middle of the day and hard again this evening even though we proactively gave her medicine throughout the day. He said it was so nice when he could get her to smile again.

When I came home from work she was uncomfortable again. When she is uncomfortable she continually moves around trying to find a position that feels better. She had a couple of moments of frustration with me about the immobilization of her knee. I can't do anything but agree with her. I did try to remind her we will figure out how to work with it just like last time. (She was already figuring out a way to go to the bathroom solo as long as it was going to be quick.) I said the immobilization isn't going to go away anytime soon BUT the soreness will. (It better!)

I have to say it was really hard for me to remember everything I have to help her with again. It's such a change!

We think it's important to keep her leg moving or it will be very uncomfortable. Once again it's hard for her to lift her toes straight. Just yesterday morning it was no problem for her to lift them straight...

The positives of the new situation are:

• We no longer have to nag her about keeping her leg straight,
• We don't have to do the painful PT of pressing down on her knee cap to straighten her leg,
• She will be able to try and walk on it

We also started thinking about what we all get when:

1. She gets the piece off her thigh and foot, and
2. When she gets the whole thing off

We are thinking of a park of some sort (like Sea World/Disneyland) for reaching the first goal and we have a huge list of places for the second goal. Of course the budget plays into this too unfortunately but its fun to dream. And it's OK since Mary doesn't sound up for my dream trip to Australia. :-) At the moment she is leaning towards Colonial Williamsberg.

We see Dr. Scott in approximately 3 weeks. We should be at 5 cm. and it should be a very interesting appointment. I wonder where we go from there...

Manipulation (Wiggle) Procedure

Today was NOT like planned. I had prepped myself for a very "simple" procedure where Dr. Scott was going to check to make sure the hardware was aligned and to do some intense PT while she was under. I thought the major drawbacks were she had to fast and go under general anesthesia for such a short simple procedure.

Got ready, did PT, turned struts to lengthen and left for the hospital

Hospital Entrance (not our normal hospital)

Waiting to be called into the surgery dept.

Changed and getting vitals

Mary just wanted to read while waiting but we eventually played some Uno

Meeting the anesthesiologist

Getting to see the mask that ironically will later make her cry

Getting hat for the OR

We have been calling today's procedure a "wiggle" because the top ring came loose and "wiggled" and Dr. Scott was going to make sure it was properly aligned. But the medical term they used was a "manipulation".

Prior to her going into the OR Dr. Scott mentioned he might be putting a bar across her knee and he warned Mary she would be sore afterwards. I knew that meant she was coming out with a bar on her knee...

Wheeling into OR

Well, it was short. We left her at 1:10 and Dr. Scott found us downstairs in the lobby at 1:50.

• He said she was fine until they went to put the mask on her for the anesthesia. I know it's because she didn't like the room spinning during her last surgery. He mentioned she is so sweet people really try to make her feel better so consoling her was the longest part.
• He said she hasn't been protecting the leg and it isn't her muscles that are tight it is her "bone joint/joint capsule" so he did put the additional strut on to immobilize her knee. He explained that since her situation is congenital that all of the structures are having to change and her joint isn't really enjoying the task.
• We will take a 3 day break from lengthening to give her time to recover.
• She can now stand on her left leg since its straight and locked in place.
• We clarified the focus of PT is now standing on her leg which will help get her body aligned. He also said to work on "tummy time", her glutes and toes.
• He said he looked at the pin sites and they look great.
• He checked all of the hardware.

When we met Mary in recovery they said she came out smiling but that didn't last long. She was bummed to discover the new strut that immobilized her knee.

Checking out the new strut that immobilizes her knee

Full view -taken at home

Close up of new strut that immobilizes her knee

Having a Popsicle

Then the pain started hitting. The recovery nurse starting giving her multiple doses of Fentanyl. At first we couldn't tell if she just had anxiety of the immobilized knee and uncomfortable or in pain. But it clearly moved to pain and the nurse started giving her Morphine. The Recovery Nurse was calling for an even heavier RX when Mary finally said the pain was lowering. Other than when the original pain block wore off and the muscle contractions during her inpatient stay it was the worst pain I had seen her in and I was not expecting that today. It took 2 hours to get the pain under control. She has been taking Tylenol with Codeine for the remainder of the day.

Not feeling good

Reading to try to relax

Finally feeling better

Getting the IV out to go home

Dressed to go home

Snacking while waiting for Daddy with the car

In the car- with a straight leg again just like the first time we left the hospital :-(

We were at the hospital from 11:00 to 5:45 for a procedure that took 20 minutes.

The past 2 weeks have been so "easy" with Mary being so mobile, independent, and sleeping pretty well however today we did a 180. Now that her knee is immobilized she can no longer go to the bathroom by herself, sit in a regular chair, etc., and she won't be able to until he takes the new strut off which probably won't be until she is done with the lengthening process in another month or so.

When my hubby and I debriefed tonight we discussed that Dr. Scott is working on setting our expectations for getting closer to 5 cm. than 7 cm. We are trying to appreciate the 3 weeks we had that her knee was able to bend but its hard once you know what you are missing.

I will add the hospital we used today was beautiful (it just opened the wing we were in 2 months ago) and the care was very professional but we missed Children's. We felt out of place. Not only because we are so familiar with Children's but because our child was the only one we saw there. We are used to everything being so kid centric and today's facility is not.

We are not alone

For the first 8 years after learning about Mary having FH I had never talked to a person with experience with an External Fixator or that had FH like Mary. All of my information was from online. I finally asked Dr. Scott's nurse if he had other patients I could talk to. He put me in contact with a mother and neat sounding daughter (Rebecca) that live in the next city over. They gave me very helpful practical advice, raved about Dr. Scott, and said it was hard but a very successful procedure.

Then through my hubby helping an Eagle Scout with a project, we met the young man that I have referred to before that had the traumatic football injury causing him to need an external fixator for a full year! I spoke to his mother right before Mary's procedure began. She too shared practical information and she reiterated the same message: Dr. Scott is amazing, its a difficult process but her son had a very successful outcome.

A mother from my younger daughter's class put me in contact with another boy that lives in our same town that had FH and lengthened his leg a couple of years ago. She too gave me practical information and reiterated the same message as the first two mom's.

3 weeks into Mary's procedure we met the younger girl at Dr. Scott's office that I mentioned previously (Annie). It was such a gift to finally meet someone with FH in person. It was also nice to help pay it forward by sharing the information we have learned from others and from our own personal experience.

Then just 4 weeks into it, Dr. Scott's office called and asked if we would speak to another family that had FH. We of course said yes. I spoke to the mother for a long time on the phone. It was a great conversation and I was so nervous to find out they were having the fixator put on in just one week! But they sounded prepared. Both of us had shared a similar journey and I am sad we didn't get put in contact years ago. It would have been so nice to have someone to relate to for the past 9 years.

Well, that family was on my mind a lot as they embarked on their journey on June 14. It reminded me of our journey that seems like so long ago at this point but in reality was just 5 short weeks ago.

Mary had a PT appointment the day after the girls surgery so Mary and I popped in unexpectedly for a short visit. We just wanted to introduce ourselves and give her a few gifts. We gave her a pink rosebud wrapped in foil and a pipe cleaner to hang on her hospital bed since the rooms are so tiny. Mary wrote her a note and we gave her pink duct tape to help bling out her walker, crutches, etc. (if she likes pink that is.)

They are a very sweet family and Mary and the other girl (Victoria) have the exact same (pink) fixator on the same leg. We will continue to keep them in our thought and prayers. Seeing them in the hospital was a reminder to me how fast you do adapt to a fixtor. Mary has come so far since those days in the hospital when we were all afraid of to move the scary looking thing. My advice as we left was every day gets better but you have to expect the unexpected. The nice thing is that we have learned we are not alone.

(All of the folks above live locally but a year ago I also found a great group of folks online that have been very helpful- see recommended links.)

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