Time for a Break!

We heard back today about Annie's doppler sonogram results.  Fortunately, there is no evidence of a blood clot or other vascular issues.  Her whole leg is pretty swollen now.  We suspect that she might have further torn or damaged a ligament or tendon in her knee from all the dislocations because her kneecap now seems to float rather freely and is slipping in and out of place more easily (and often).

We're trying a Shields brace (that we used 2 years ago when her other knee had these same problems) so hopefully that will stabilize it at least a little for the time being.  We'll have to wait it out for a few more weeks because her orthopedist can't see Annie until January 16th! 

In the meantime, we're waiting to hear back from the neurologist, but we're assuming that the plan will be to give Annie more regular doses of Ativan, which we normally use just PRN for when she's having a particularly long seizure. They might want to increase her vigabatrin dose, but I'm hoping we can just administer some temporary meds until her sleeping and pain get under control.  After that, I think her seizures will go back to normal. *fingers crossed*

As for me, I had my MRI today--it's the first one I've had where my head hasn't been in the tunnel!  It makes for a much more pleasant MRI experience!  I won't get results until I go back to the orthopedic surgeon on January 3rd.  So we don't have any appointments for the next week--it will be nice to have time to start thinking about Christmas and getting things ready.  It will be a small and simple Christmas this year, but it will be nice to just focus on spending time together as a family and counting our many blessings.

Catching Some Zzzz's

I wish I could report that we're all starting to sleep through the night again, but unfortunately, the title of this post is only meant to describe the fact that we got Annie's sleep study results today. 

Annie had a routine CPAP titration sleep study last week and we talked with the pulmonologist about the results today.  We knew her apnea was severe, even after getting her tonsils and adenoids removed. She's been using CPAP for the last 4 years, but they like to check her pressures every few years. At this latest study they only let Annie sleep without support for a short while--during which she had several long episodes of apnea lasting 20-30 seconds each, with her oxygen saturations dipping into the 80's.  Not good.  Thirty seconds is a long time to be holding your breath, especially repeatedly in back-to-back episodes!

She's been at a pressure of 9 the last 4 years, but during the study, she was still having an average of 10 episodes an hour at that pressure level.  As they increased to a pressure of 10 the episodes went down to about 1 every hour.  Much better, especially compared to a pressure of 7 with which she had 30 episodes an hour!  So we'll be keeping her pressure at 10 now and hopefully Annie will start feeling better rested... as soon as we get her knee pain and UTI pain under control so she can sleep!

Knees and Pees

I'm pretty terrible at coming up with clever and catchy blog post titles, so I turned to Justin for this one. :)  He came up with the title quickly and gave us all a good laugh which was much needed after a rather difficult day today.  Let me explain a bit...

First, I had a follow up with my orthopedic surgeon.  My knees have not improved after several weeks of twice-daily physical therapy.  I stood up wrong somehow from the kitchen table the other day so now the pain is more constant than before.  The orthopedist is getting me scheduled for an MRI soon to get a better picture of what's going on in my knee.  But he is still telling me that I would get the best results from a surgery to move my lower patellar tendon more medially.  It would be a complex surgery with a long and difficult recovery. 

My left patellar tendon is offset by 23 degrees, which doesn't sound like much, but compared to my right knee which is offset by 16 degrees, the difference is quite noticeable and seems to be the source of my problems.  So we'll just have to see what the MRI shows here soon in regards to surgical options.  We're having some problems getting the MRI scheduled after I told them about the 13 metal coils I had placed in my pelvis a couple years ago for my vein embolization.  But I'm really hoping I can get in soon and get some answers about my knees.

I can't manage daily activities very well without some knee pain, but Annie's knees are really in much worse shape.  It often makes me feel bad for complaining about my own knees at all.  Annie has been in a vicious cycle lately:

increased seizures,
which causes both of her kneecaps to dislocate,
which causes pain,
which causes lack of sleep,
which in turn causes more seizures. 

Justin and I have been holding her on the couch together in the middle of the night, both of us fighting against her seizures to prevent her kneecaps from dislocating, trying to calm her crying.  Her emergency seizure meds have been used twice just this week.  Needless to say, everyone is exhausted. 

Annie's right knee started dislocating several years ago and she had surgery to fix it, although it failed.  Her right knee has been dislocating ever since, although it hasn't been painful for her.  However, it is now getting even harder for us to put back in place.  And just recently, her left knee has started dislocating as well.  Her left knee is extremely painful when it dislocates, especially when it starts dislocating repeatedly throughout a seizure that may last 20 minutes or more.  Her left knee has become so swollen, the skin is pulled completely tight and all the tissues around her knee are hard.

Not sure this picture very accurately shows the severity of the swelling of her left knee, but you can tell that the bones that are visible in her right knee are not visible in her left due to the swelling.

Add on top of her knee problems the fact that Annie was also diagnosed with a UTI today.  (Thus the "Pees" in the post title.)  We suspected it all week, but it was difficult to figure out the exact source of pain since her knees are obviously painful as well.  While at the pediatrician's office, we talked to him about her swollen left knee dislocating and he recommended the same doctor who operated on her right knee several years ago. 

However, the pediatrician was so alarmed at the amount of swelling in her knee, and that the swelling extends even below her knee down her leg, that he has her scheduled for a doppler sonogram tomorrow to check for blood clots or problems with blood vessels from where her kneecap is dislocating.  So hopefully we'll have an update on that tomorrow.

The pediatrician will also be contacting our neurologist to see if Annie should have her seizure meds increased.  I don't necessarily think that's the problem--I think her increased seizures are due to her lack of sleep and the pain she has--but we'll see what he says too.

The idea of a baclofen pump was thrown out--often issues with high muscle tone can cause dislocations like this.  Since she's grown so quickly the last few months, they suspect that her muscles have gotten tighter as they have struggled to keep up with the growth of her bones (since she doesn't use and stretch her muscles like a typical child).  The baclofen pump is a device that would be surgically placed in the abdomen with a catheter running into the spine--like a permanently placed epidural--to constantly deliver baclofen to relax her muscles.  We're hoping to steer clear of this option--hoping that a possible bilateral kneecap removal would be less risky in the long run, but still not fun or easy.

Our Christmas break is turning out not to be quite what we had in mind, but we're hoping that we can get more answers soon--from my own MRI, from Annie's orthopedist, from Annie's doppler sonogram tomorrow, from the neurologist.  And hopefully we'll get her UTI cleared up soon without any complications from the antibiotics--which always make us nervous since her c-diff infection.  I hope to keep posting updates here as we learn more over the next week or two. 

We are all feeling overwhelmed, not just with Annie's health challenges keeping us worried and exhausted, but with my own knee pain and the added burden that places on Justin for care-giving.  He has been so wonderful to be helping out so much with the kids, going up and down stairs for me when I can't, doing Annie's transfers, and getting a few groceries on his way home from work. We appreciate all prayers for our family, especially for Annie.  Thank you!

Church Christmas Party!

So here's the reason I'm just now getting around to posting pictures from Halloween!  Since Justin is in the Bishopric for our church, he so kindly volunteered me to be in charge of the church Christmas party!  Fortunately, they also asked one of my friends, Sarah, to help as well.  She has experience with catering, so she took care of all the food for 225 people, and I just worked on the program and the decorations.  Sarah did a FABULOUS job with the food, cooking several pot roasts, making homemade rolls, and green beans, and mashed potatoes! 

We arrived at the church at 7:30am the day of the party to get the gym set up.  We had been the week before to do a trial run with the lights and figured out how to best hang them to get the tent-like effect.  However, we didn't realize how heavy ALL the lights together would be (about 100 strands of lights), or that it would end up taking 6+ hours to hang all those lights!  My dear, sweet husband climbed up and down ladders all day helping get the lights just right for me!  It broke my heart when we had to just take them all down after!  But it was a fun experience and I think a lot of people enjoyed the evening.

November

Our friends were finally able to adopt their 3 sweet foster children!  We were blessed to witness the adoption and celebrate their big day with them!

After the adoption, we celebrated at the Children's Museum!  It was the first time for us to go and we had a blast.  I think Justin had more fun configuring all these tubes for balls to go through than the girls did!

Thanksgiving was a fun day for us as well.  Justin had to do a project for a class he's taking for teacher development.  He had to create a website showing our Thanksgiving with a recipe demonstration and pictures, so you can look at that HERE.  The girls had a lot of fun taking charge of a point-and-shoot camera, so we got lots of crazy pictures from the day.

Halloween

I'm slowly trying to get caught up on pictures and just came across these on my camera today.  Just a couple months late!  Annie was sick for Halloween this year, so she didn't get to dress up. But our cat and princess had a great time trick-or-treating!

Like Daughter, Like Mother

Most daughters long to follow in their mother’s footsteps—they watch their mother and desire to grow up to be just like them.  They dress up, struggling to walk in high heels.  Daughters try out their mom’s makeup, and play house with their own baby dolls.  Daughters model their mother’s behaviors starting at a very young age. 

Most mothers work to set an example for their daughters, of what they should work towards as they grow up, to be an example of characteristics their daughters should strive to emulate.  However, none of these things describe the relationship between my oldest daughter and me.  I am not one of those mothers.  I am the mother of a daughter with special needs, a daughter who already has a perfect and celestial spirit.  Instead, I look to her as my example of all the characteristics I hope to develop in my life. 

The saying goes, “Like Mother, Like Daughter” as daughters grow into developing the same characteristics as their mothers.  However, the last several months have shown me that in my case, I hope the phrase would more accurately be, “Like Daughter, Like Mother.”  I do desire to have more pure Christ-like traits like my daughter Annie has, but the last few months have gone even beyond that.

Many of you that know Annie well already know that she has dislocating kneecaps.  One in particular is worse, dislocating several times a day despite surgery to fix it several years ago.  It’s become a normal thing throughout our day, checking to make sure her kneecap is in place before moving her or transferring her to or from her wheelchair, or checking her knee very first when noticing that she’s upset about something.  The grooves that her kneecaps should glide in are very shallow, and with her high muscle tone also, her kneecaps can easily slip out of place, especially when she has her seizures.  This is where the statement “Like Daughter, Like Mother” has become particularly true over the last several months.  You see, I “inherited” my knees from my daughter.

Near the end of the summer, I started noticing that my knee would click and grind every time I bent it, particularly when going up or down the stairs.  It didn’t hurt and I didn’t think much of it, although the sound was like nails on a chalkboard to me.  The clicking and grinding continued regularly for several weeks before the pain started.  I began having severe pain behind my kneecap, making it impossible to go up and down stairs without using the handrails as a crutch to eliminate bending or bearing weight on my painful knee. 

After researching my symptoms online, I was certain I had chondromalacia—inflammation of the cartilage behind my kneecap.  The mystery, however, was that I had not been running or straining my knee at all, and had not suffered any kind of injury to cause the chondromalacia.  The only change in my life that may have contributed to this problem was the fact that Annie had gained about 10 lbs in a 2 month period (now weighing 60 lbs).  Annie is fully dependent for all transfers in and out of her wheelchair or bed, and our only thought was that the added weight of her has stressed my knees more than usual. 

My dad, a retired physician, believed that the chondromalacia was most likely caused by my kneecap not tracking correctly in its groove.  Guided by my dad, I started my own physical therapy in September, doing exercises at home that would strengthen the muscles around my knee to help my kneecap track more properly in its groove.

By late November, the pain had only continued to increase, making it nearly impossible to go up and down stairs, or even go to the store to get groceries.  We started realizing that I might have a bigger issue going on and I went to see an orthopedic surgeon. 

My x-rays revealed that I have my daughter’s knees.  The grooves that my kneecaps should slide in are very shallow, causing my kneecaps to want to pull out to the side just like my daughter’s.  In addition, my tendons connecting my kneecaps to my shins are also genetically placed much more laterally than they should be, which is also working to pull my kneecaps out of their grooves.

The orthopedic surgeon told me that I was a perfect candidate for a rather invasive and uncommon surgical procedure to move my laterally-placed tendons more in proper alignment, and eliminate the pull they have on my kneecaps in the wrong direction.  But before jumping into surgery, the orthopedist sent me home with a prescription medication and orders for outpatient physical therapy at the hospital several days a week.

I left the orthopedist feeling discouraged and overwhelmed.  I don’t have time for several physical therapy appointments at the hospital each week, I thought.  And I definitely don’t have time to recover from an invasive knee surgery! Going to the doctor was supposed to make everything better—I wanted and needed a quick fix for this chronic pain.  But then I thought of Annie.

Nothing for Annie has been a quick fix.  For most of her problems, she won’t get a “fix” at all in this life.  The last few months as I’ve struggled with my own chronic pain, I’ve also gained a greater appreciation for Annie, who deals with pain far worse than mine.  Annie has had more surgeries than I ever will.  She faces difficult medical issues every day, yet she is happy and finds joy in her life despite her challenges.  Even during past hospitalizations, she has found the strength to smile and laugh and brighten the lives of those around her.

I don’t know yet what will happen with my knees, but even if I need surgery requiring a long and difficult recovery, I know that Annie is my strength and inspiration.  So although I “inherited” my daughter’s bad knees, I hope that is not all that I’ll be able to say I got from her.  I hope that I can follow her example and learn to face my own challenges with the same grace and patience that Annie does.  And maybe someday, “Like Daughter, Like Mother” might accurately reflect all that Annie has given me, and maybe someday I can grow up to be just like her.

Need a Lift!

When we built our home nearly 4 years ago, we had this ramp built to allow us to get Annie in the house.  But as she's continuing to grow, this ramp quickly became very difficult to get Annie up and down.  She weighs 50 lbs and her chair weighs about 85 lbs and this ramp is at a 12 degree angle--ADA compliance requires ramps to be less than 3 degrees.  We decided it was time for a lift!

BEFORE

 We are very blessed to live in a state that helps contribute to home modifications for children with disabilities.  It was a long process--about 4 months--but having this new lift in our garage has been, and will be, a tremendous blessing!  I used to have to wear sneakers on Sundays to prevent me from slipping as I got Annie up and down the ramp, then I'd change shoes in the car before heading to church.  Not anymore!  Hopefully this lift will also eliminate the strain on my knees I've been having lately.

AFTER

Although we had assistance with the lift and getting it installed, we were required to do all our own modifications of the decking to prepare it for a lift.  We had to have all our modifications made BEFORE we could get quotes on the lift, so we had to live temporarily with the ramp jutting straight out into the garage.  Here are pictures of the whole process and the work we did.

First we needed to remove the existing ramp, but we had to do it carefully so that we could re-attach it to use for a month or so before the lift would be installed.

After removing all the bolts securing it to the wall, we had to figure out how to pull apart TONS of nails in lots of metal brackets which secured the ramp to the decking.  The only way we could figure it out was to use our two car jacks to raise up the ramp and pull against the nails.

IT WORKED!!  Then we wedged a piece of wood between the ramp and decking where we loosened the nails at the bottom, so when we lowered the ramp, the nails at the top were loosened too.

Justin used a crowbar to then get the nails out and the brackets loosened even more.

Unfortunately, the crowbar slipped and hit Justin in the head.  It was just a small cut and didn't require any stitches, but Molly was extremely panicked by the large amounts of blood.  We're grateful the injury wasn't any worse!

We finally got the ramp off!!

In order for us to still access this side of the garage when cars are parked in the garage, we needed to extend the decking so we can build a new staircase next to the lift.  So we got that extension framed out and bolted to the house.

And completed it with the top.

Then we re-attached the ramp onto the new decking.  This ramp is only temporary while we have workers out to give us bids on the lift installation.  Suppliers claimed they wouldn't give us bids until the decking work was completed.  So we lived with the ramp like this for about a month while we worked to get bids.

Lexie and Molly were very helpful while Justin and I spent so much time working in the garage.  They created a water stand for us and made sure to keep our water cups full!

The final wood work was completed by the supplier.  They had to build rails on the decking in order for it to pass inspection and also insert the wood panel on the lift end for safety when using the lift.

Then the lift was installed!!!  But leaving it like this made it so we couldn't access our freezers or that side of the garage with cars parked inside, so we immediately began work to build a new staircase.

First we removed the ramp--it was much easier this time.

Then we started building the stairs and removing the big rails that the supplier built.

Justin working on the stairs and Jodi working on the railing.

All done!  Our finished staircase and new lift!

 

The gate at the top.

For safety, when the gate is open, it blocks off the new staircase so Annie can't accidentally get a wheel over the edge of the stairs.  The gate can only be opened when the lift is raised, and the lift won't operate if the gate is open.

 

All finished!  What a HUGE blessing!

Good Times in Utah...

 We took our annual trip to Utah this summer and had a fun time with both sides of the family.  We first spent some time in Bountiful with the Oldroyds.

At the Clark Planetarium in Salt Lake City

 

Molly had fun with her cousins playing at City Creek in downtown SLC.

 

I enjoyed having a morning and evening to get some pictures of the Bountiful LDS Temple.
To see more pictures I took of the temple, visit my photography website.

The LDS Salt Lake City Temple--workers had already started putting up Christmas lights on the trees!

The Mormon Conference Center in SLC.

We swam at Grandma and Grandpa's pool nearly every day.  Annie even loved it!  It was so fun to hold her in the water.

Molly has really started becoming more comfortable swimming on her own this year.

Hanging out at the pool

After several days in Bountiful with my family, we drove to Draper to spend time with Justin's parents.  

Annie wasn't too sure about feeding the geese at Wheeler Farm.

But Lexie LOVED chasing all the pigeons and geese!

One day we drove to Oakley, Utah to see Tolmans' new cabin being built.  We stopped for a picnic in the mountains and ate quickly since a bear was sighted less than 100 yds from where we were!  But it was wonderful to be back in the Utah mountains!

 

We went to Provo and walked around BYU to remember our college days. 
This classroom is where we first met in 1999 in Math 113H--Honors Calculus.

BYU Campus

My primary position on the 14 hour drive to and from Utah.

Annie was SO grumpy on the drive home and just wanted to sleep, but couldn't until we tied her head back to her headrest!

We always love our trips to Utah, but they seem to go by so fast!  We sure wish we were closer and could visit family (and the mountains) more often!  :)