The monotony of recovery

Tomorrow will mark two weeks since I made the huge mistake had partial knee replacement surgery. If I had any idea what I was in for, I would've taken my pretty little pedicured feet out that hospital door and headed home. My PT says that there are stages of recovery similar to stages of grief. I'm still in the "why did I do this?" stage and will soon enter the "will it ever get better?" stage.

I saw Dr. Brotzman, my orthopedic surgeon, today for my post-op followup appointment. Overall he is pleased with my progress. I'm up to 90-degrees of flexion in sitting position and up to 95-degrees on the CPM machine. Curtis took this photo with his Blackberry while I was still in the hospital. The CPM bends my knee up and down; I input the degree of flexion. My goal is 120-degrees by next week. We call it The Rack or the torture device depending on how much I'm hurting. Last night while attempting 95-degrees, I could feel my incision tear open a little.

That blue thing on top of my knee with the hose is the ice pack. It's attached to a cooler of ice and pumps cold water around my knee to help with swelling. I'm still on the CPM 6 hours a day at this point... it is so tedious. I do a chunk from 9-11, 1-3, and 7-9 but it feels like I'm on it all day. Anytime I'm in bed, I also have the ice pack on. Anytime I'm not in bed, I have the leg brace on. I'm not needing the walker as much this week as last, but I'm not confident without it yet either. I thought I had a lot of swelling still and it was preventing me from bending too much more and Brotzman agreed. So while I was there, he drained the knee in two places after taking out my stitches.

Can I just say that this was icky and leave it at that?

He said my mobility should improve with some of the fluid drained out. The swelling actually shuts down the quad muscle from contracting so I'm hoping to get more strength there soon. The PT puts an electrical impulse device on my quad during therapy; it's pathetic how little strength is there now. My good leg is in the 300s, my left ranges between 20-40. Wow, right? I'll try not to complain anymore, I promise. Doing all of my PT exercises at home and getting in the hours on the CPM feels like a full-time job. Sleep is elusive as is comfort. At least I'll be allowed to shower now that the stitches are out!

I want to take a moment to express my gratitude for my husband, my daughter, and my mom. Curtis is working 12-16 hour days this week, making dinner for the family, taking the kids out on errands, and doing their bath and bedtime routines. He is exhausted. Oh and he is also filling up my polar ice machine 4 times a day which requires running out to the corner store for ice every other day. He has not complained one time. Jenny is doing our grocery shopping, household chores, errands, and taking care of Dominic. She's also brought me treats and magazines and been super duper sweet. She starts back to school tomorrow for a crazy-intense schedule this spring of classes at two campuses and working too. My mom has been my nurse, my angel, and the one who takes care of everything else. She is helping the kids with their homework, taking me to PT (she is a great chauffeur!), freshening up my bedding, managing my medications, keeping the kids overnight or for a meal to give Curtis a break, and doing some of our household chores... all the while working full-time too. I feel so grateful and guilty too, everyone is so tired. It looks like it will be another few weeks of me being pretty dependent though I am making progress every day. I also want to thank Debbie, Serena, and Renee for dropping by for a visit and bringing treats. Your presence brightened my day so much!

New release by AnnaBV Designs

Have you started dreaming of Christmas yet? Dominic has! I was so pleased to see this kit come out... AnnaBV Designs is releasing a new kit today at ScrapOrchard called Letter to Santa. I love this color palette and it some truly adorable elements. I had fun with this one!

Letter to Santa

My Layout

Thanks for looking!

Pediatric geneticist visit

I got a call yesterday reminding me of a visit with the geneticist for Anna this morning. Ugh! I did NOT have that appointment on my calendar so I'm glad they called. I don't know if you all remember but before Anna's MRI and ultrasound last month, I tried and tried and tried to get into to see the geneticist before the procedure. I thought these new symptoms might give Dr. I another clue as to what is going on with my baby girl. We did get an appointment set up only to have the doctor cancel it due to illness so we did not get to see her prior to the MRI. I totally forgot that we had rescheduled it for today.

Anyway, we get there at 9:00 a.m., right on time. At 9:35, I poked my nose out of the exam room scanning for a nurse wanting an ETA from the doc. Waiting that long with Anna is a chore! Nothing from the nurse. At 9:45, I went out again and asked again a little nastier... everyone scurried about and said she'd be in within the next few minutes and that she was having computer problems. Grrr. I threatened that if she wasn't in by 10, I would leave. I HATE that doctors make you wait that long. How hard would it have been to come in at 9:15 and say, "Dr. I is running late/having computer problems/blah blah blah, would you like to wait or reschedule?" Seriously!!!

So I was boiling when she appeared at 9:53. She apologized for the delay, then immediately scooted over to Anna and starting engaging in the nicest conversation with her. I felt my anger melting away as I saw a full page of handwritten notes on the doc's notepad and saw how fully she gave Anna her attention. Within just a few minutes, I was back in find-a-diagnosis mode... it was nearly three years ago when we last saw Dr. I. She has really prepared for our appointment by reviewing Anna's history and recent tests (granted, it was in the 50 minutes we were waiting, but I was still pleased).

It's a very emotional process to look for a diagnosis. Years ago, it was a much stronger drive to find an answer and when test after test came back normal, I began giving up hope that we'd ever find an answer. Well, that door has been opened again. Wouldn't it be something to get a real diagnosis at 9 years of age?

The doc mentioned that Anna's MRI and ultrasound results from last month were normal but her blood work was highly abnormal. Then she proceeded to say that the endo would need to go over all of that with us. Ugh. You bet I was on the phone to the endo's office as soon as I left there, but I didn't hear back from them yet. I'm glad her MRI and ultrasound were normal though, that's really good. I wish they would have called already.

Dr. I wants to look at Fragile X. I thought Anna was tested for this as a toddler, but she wants to do the full DNA sequencing for Fragile X. When I looked at the checklist of symptoms... well, my jaw hit the floor. Anna has nearly every one of these. Sigh.

We also talked a long time about connective tissue disease. Dr. I feels that Anna actually has two genetic syndromes, one connective tissue related and the other causing the seizures, PDD-NOS, anxiety, and cognitive challenges. My mom's mom (now deceased), my mom, and myself have a genetic connective tissue disease. The last geneticist I saw said that I have five of the six markers for Ehler-Danlos Syndrome. Anna is much more affected than I am. The doc noticed that Anna's joint laxity has gotten much worse over the last three years and that she has developed kyphosis (like a hunch in the upper shoulders). So she is referring us to an orthopedic doc. She also wants us to see a cardiologist to look for connective tissue issues in her heart (I have a mitral valve prolapse, so we need to see if Anna does too). During the physical exam, Dr. I is really exclaiming over Anna's flexible elbows, hands, wrists, and fingers and Anna says, "Is that good?" to which Dr. I replies, "No honey, it's really not." It was very sweetly said, but humbling too.

The 2-hour visit exhausted me and Anna... I'm anxious about the blood test results so as soon as I get them, I'll let everyone know. Dr. I was pretty sure the endo would be ordering more blood work soon, so we'll be getting the Fragile X DNA test and fibrillin (connective tissue) DNA test added onto that blood draw. Anna has such a hard journey... there are moments that really hit me and today was one of them.

On a happy note, I got to take Anna out to lunch at her favorite restaurant before returning to school. How cute is this girl, huh?