Finally! Some good news!

Ava has had a few REALLY great days this week!  (You know how they say it has to get worse before it gets better?  The last week or two has been B-A-D, so we were ready for it to turn around)

She is getting around a LOT better.  Here are a few videos of Ava getting in and out of the car - all by herself - and walking with a crutch.  She has decided that she really prefers walking with one crutch over the walker.  The only worry we have is when she's near other kids or in a crowd where people may not realize and bump her.  If she were to fall, it would be terrible.  But - around our house and to and from PT, I've been trying to let her use the crutch since she moves faster and smoother it seems!  

The past three days, pin care has not been as horrific as the week before.  We started her on antibiotics last weekend to try to be sure that those bottom pins didn't get a bad infection.  We weren't sure if there was an infection, but they were starting to seep yellowish stuff (yuck!) so I thought it was better to be safe than sorry. Infection is NOT what we need - and can be dangerous with the pins in her bones.  Since starting the antibiotic, she seems to be doing better and the pin sites are finally looking a bit better.  

We've had major issues in the past few weeks with what the doctors explained are granulomas which have appeared around the bottom two 'knee' pins.  They are hyper-healing areas of tissue that have developed - sort of like the skin is trying to heal from the inside out instead of the outside skin healing up around the pins.  This has caused Ava a lot of pain, and in turn, even MORE anxiety about taking the sponges off the pin sites and washing and cleaning/pin care each day.  Every single day has been a battle.  The mere mention of shower sets her into a tailspin of tears.  The fear of pain and discomfort has overwhelmed her.  It is so hard to see my usually fearless girl (the one who rides ALL the roller coasters at Busch Gardens?!) dissolve into a puddle of fear and anxiety over putting water on her skin.   We had to do treatments with silver nitrate sticks - both at the pediatricians office and then at home on our own - for the past 2 weeks but it didn't seem to really be making much of a difference until the past couple days.  I finally think I'm seeing a light at the end of the tunnel with that.  I truly believe that if we can get these pin sites mostly healed, a LOT of Ava's anxiety and fear will disappear.  Maybe not entirely, but at least to a manageable level!

I met at the school with the principal (Director of Lower School for all those familiar with Independent School language) and her 3rd grade teacher last week.  Ava will be in 3rd grade - which is the same grade I taught when I was teaching at Norfolk Academy. :)  So she will be in my old teaching partner's class and I am so glad to know that she will be well taken care of.  I have total and complete peace about turning her over to them every day.  I know that she will watch out for Ava in the best way possible and make sure that not only is she physically okay, but that the other kids are doing and saying the right things, too.  I am fortunate that Ava is in a school that is accessible for her, but also one where each child is allowed the individual care they need - especially in cases like this.  Everyone looks out for each child - the resource teachers, librarians, support staff...they've all asked how Ava is doing and asked if there's anything they can do to help.  I know that they will all be looking out for her.  They stressed that whatever Ava needs, we can do.  If we need to bring her in late or pick her up early, that's okay.  Her teacher said, "It's just 3rd grade. She will be fine!"  :)  I honestly don't know how she's going to adapt and deal with all the stresses of going back to school, but I am sure that no matter what, we will be able to work out a plan to deal with anything after chatting with them.  

Physical Therapy is going well - she really loves the therapist and they seem to be doing all the right things to keep her range of motion where it needs to be.  We are finally back to being able to do stretches and exercises at home more easily and without such a fight, so that makes things easier.  We are still working on her not being quite so 'snappy' to her family members, but that's something the counselor will have to touch more on in their therapy sessions.  (One more appointment to fit in during the week!)  I am worried about all this WITH school in another couple weeks.  Our current plan is for her to be in school the full day 8am-3:30pm and then have PT 3 days a week in the evening.  But fitting in homework and counseling and 3x/wk PT may prove to be a bit much.  I guess we'll just have to see.  

With the help of my sister (the pharmacist), we have finally figured out (I think!) the best dosage of medicines....so we are not going to do anything different for a while on that front.  Whew!  

Looking ahead:  We have 7 weeks of school before the removal surgery (Oct 10th!).  I found out recently that we are supposed to stay in Baltimore the following week so that their physical therapists can work with her on re-learning how to walk properly, bend her knee, etc. and teach her (and us) the best stretches and movements to help maintain her range of motion.  She will be fitted for a brace called the Scottish Rite Brace and they will put it on in the OR.  It is removable, but she is required to wear it 23/24 hours a day....so no real break from the restriction and movements after the fixator comes off for about 6 weeks.  :/   When we come home from Baltimore after removal surgery, her physical therapy appointments are upped to 5 times a week.  (yikes!)  We will have follow up appointments in Baltimore after that and she will hopefully be released to more and more weight baring and more and more activity in the months this fall.  Our hope is that by Christmas she will be back to normal activity.  Please send a prayer that this is the case for her.  

For the last 2 weeks of her 'summer vacation', we are going to try to sneak in as much fun as possible since we really haven't had much at all so far.  I hope that things are truly on the upswing now.  Any prayers or good thoughts you can send our way would be GREATLY appreciated!!