Oldroyd Reunion in Bountiful

All 25 of us!

Golfing at Cherry Hill

Molly playing the Minute-to-Win-It Game--trying to get the cookie in her mouth without touching it with her hands.

Lexie sleeping in Grandpa's trailer

Grandpa dancing with Lexie to jazz music at Bountiful City Park

Molly's turn to sleep in the trailer

Lexie at the "fishing pond"

The 6 year old cousins!

Annie at Thanksgiving Point

Motorcycle rides

Justin trying out the BB gun.

Ranula Surgery

We made our second trip to Ohio this past week for a second round of injections on Annie's sublingual glands where she had developed a ranula.  Fortunately, since the submandibulars didn't need to be injected, they were able to inject both sublinguals at the same time--keeping the swelling in the front of her jaw and away from her throat.  Annie tolerated it all well and even got discharged just 10 hours after the procedure!  We stayed at the Ronald McDonald House again, and continue to be impressed with all the good they do and the kindness and generosity we received.

A week before surgery

Just after surgery--her tongue became pressed to the roof of her mouth with the swelling of the glands.

She looked great after surgery!

Healing--1 day after surgery.

One day post-op.  Happily watching TV in our RMH room.

At the Ronald McDonald House after discharge.

Pop tops brought in to the RMH from a local school, collected over the school year!  SAVE YOUR POP TOPS!

Our poor muffler broke during the drive to Ohio.  Gladly, we got it fixed before the drive home.

Annie's 9!

Each birthday is a blessing!  I can't believe this sweet girl is 9!  We celebrated with cake and ice cream, balloons, music, dancing, and presents.  Annie's favorite was the darling flower hair clips from her sweet Aicardi sister, Brooke!  Thanks so much for all the kind birthday wishes for Annie!  It fills us with joy and warms our hearts to see so many people show her such love!

Annie's Ranula

Annie's salivary gland ablation has been an absolute miracle in our lives!  Since recovering from the procedure, Annie is able to go all day without a bib!  We have been SO thrilled!  However, the other day when I went to brush Annie's teeth, I noticed that the area under her tongue was swollen up again, just like it was shortly after surgery.  I immediately knew that something was wrong and suspected a ranula.  We took her to the ENT here who confirmed it was a ranula and suggested a rather invasive surgery to take care of it.  However, he did not recommend the procedure that would have eliminated the ranula from coming right back.  I left the appointment with a bad feeling and knew I wasn't comfortable with this doctor's plan.

I then paged our doctor in Ohio who did the salivary gland procedure.  He immediately called me back and talked to me for about 45 minutes about all our options and how to best go about treating the ranula.  What a wonderful doctor!  He basically told us that we have two options...

The first option was to stay here and have a qualified ENT do a very invasive surgery to completely remove both of Annie's sublingual salivary glands--a risky procedure that could cause facial nerves to get accidentally cut, causing Annie to lose her smile or have paralysis of her tongue.  This was the exact procedure we were avoiding by going to Ohio in the first place for her salivary gland ablation.

The second option was to return to Ohio to have our doctor give Annie another set of injections into her sublingual glands which would treat the ranula and prevent the ranula from developing again.

I guess I should explain what a ranula is...  A ranula is a build up of fluid from the salivary gland causing lots of swelling under the tongue.  Usually they are caused by a clogged duct from the gland.  In all the salivary gland ablations our doctor (the first and only in the world to do this procedure) has done, never has a patient developed a ranula after.  Of course, leave it to Annie to present an unusual case!  What he thinks has happened is this... when he injects glands for the ablation, he only kills off about 80% of the gland to help prevent over-filling the gland which could cause the solution to seep out and kill surrounding tissues.  So what he thinks happened with Annie is that the remaining 20% of her glands that are still producing saliva are trapped by the "dead" portion of her glands, causing the fluid to be stuck in the gland and swell up.  So the plan is to go back in to each sublingual gland and re-inject each gland to try to kill off the remaining 20%.

If left untreated, the ranula will continue to grow to the point where it ruptures (we had our first rupture already), then it will slowly start to grow back again, rupture, and continue that cycle.  Over time the ranula will start growing deeper into her jaw and pose a risk of infection.  The sublingual glands also don't produce a nice watery fluid that you would expect.  The sublinguals are the glands that produce mucous, so the fluid that drained when the ranula ruptured was more like honey.  Annie had a rough couple of days trying to deal with that drainage and vomited a lot, and now the ranula is growing back.

We didn't want to have to go back to Ohio, but we know our doctor there is the absolute pro on all of this--his new salivary gland ablation method came about because he originally devised that method for the treatment of ranulas.  So we feel much more comfortable with him and are opting for the much less invasive and less risky procedure.  And we'll just keep our fingers crossed that the ranula does in fact stay away!

Lexie's Such a Sweetheart!

Lexie is growing up so fast!  She's such a little sweetie!  Lexie is becoming so helpful, especially for Annie.  She loves to give Annie hugs and will run to Annie and snuggle up against her arm!

Lexie is making huge strides with her speech delay too.  Her therapist continues to be surprised at each visit at how much better Lexie is speaking.  She's still rather delayed, but she's working so hard and showing excellent progress.  This August Lexie will be transitioning out of her current at-home therapy program to a classroom setting.  She'll start attending a Language Group program--a special preschool for children with speech problems.  As a part of that, she'll also continue to have one-on-one therapy sessions with a speech therapist there.  We are so sad to have to say goodbye to her current therapist soon, but are grateful for all the work she's done with Lexie.

Better Late Than Never...

Justin graduated with his PhD in Pharmaceutics in 2009 from the University of Texas at Austin.  At that time, he decided to rent his robes for graduation, only to find out that the rental robes were the traditional black gowns with flat mortar board hat.  After getting to Creighton University, where he's needed robes to attend graduation every year, he decided to buy the official UT PhD robes that he had expected to graduate in.  With Creighton's graduation this May, I finally was able to get some pictures of Justin in his official UT robes.  It's too bad he didn't actually graduate in these fancier robes, so we'll keep these pictures and just pretend!  We're so proud of Dr. Tolman!

Happy Easter!

The Girls

It's been a while since I posted any pictures of the girls--at least of Molly and Lexie--so here's some recent ones I've taken.

I was experimenting a bit with some studio lighting one day and was surprised that Lexie actually wanted to be my model!  However, I guess the light was too bright for her sensitive eyes!

At least she wanted to pose for me, because the following pictures are usually the type of shots I get from her!

And Molly is my perfect little model when she wants to be (or when I bribe her).  She got all fancied up for her Kindergarten music program and actually let me take some pictures of her.

Annie is doing really well since her surgery--the swelling has gone down a lot, but she still has "rocks" under her jaw from where the dead glands are.  But we think that is starting to go away too.  Her ulcerative colitis keeps us on a roller coaster, but currently she still seems to be doing well off the prednisone.  She's over her illnesses, back at school, and as happy as ever!  (With much less drool too!)

Can't Catch a Break!

Annie hasn't been back to school since her surgery a week ago last Wednesday.  We thought she'd be able to return to school last Monday as a happy, healthy, and much drier child, but of course life is never that predictable.  Annie hasn't been doing very well since about last Sunday.  Her salivary gland ablation surgery left her with lots of swelling and thick secretions that have been difficult for her to tolerate, causing almost constant coughing and vomiting bile.  We've been suctioning her regularly since surgery, even throughout the night. 

However, it was about Sunday when her cough started getting weaker and weaker and she just hasn't been able to clear all the junk that's collecting in her throat.  We usually just suction it out, but all the congestion is too deep for us to suction anymore--we just don't get anything.  Usually when we suction her, it also makes her kind of gag and cough up what's in there, but we can't even get her to cough or gag with the suction.  She's just not her usual self and the weak, congested cough is continuing.  Her drooling is almost just as bad as ever, but we're trying to not get too discouraged about that yet since we think she must have some other bug that has increased all her mucous and phlegm. 

We met with her GI on Tuesday, originally planning to discuss how to get Annie off prednisone which has been managing her ulcerative colitis.  Fortunately, we were able to wean her off the prednisone in preparation for her surgeries, and amazingly enough we've been able to keep her off the prednisone.  She still continues to have 1-3 very loose stools a day, but that's a huge improvement from the 8-12 she used to have without prednisone.  Blood in the stool has also been absent, even without prednisone, so we're hoping she can maintain this status.  The GI did say though that if she has another flare up with more frequent stools or blood present, Annie will most likely have to start taking stronger immunosuppressants--drugs that are typically used for chemotherapy.  That's made us very nervous, so we're praying that we don't have to go down that road.

On Tuesday I also had Annie into the pediatrician for her post-op follow-up, her UTI follow-up, and to talk to him about her weak cough, congested airway, and us starting to worry about pneumonia.  Her UA showed a possibility that her UTI is still present even after her full 10 day course of antibiotics, so we're waiting to see how the culture comes back.  The doctor said her lungs sound ok, like the congestion hasn't settled low enough that she has pneumonia yet, but he's concerned about her.  He wanted to start her on antibiotics to help prevent pneumonia, but with the urine culture still pending and the high risk of c-diff reoccurring, I asked him if we could hold off a little longer. 

So we should hear today or tomorrow about whether she needs another round of antibiotics for a UTI, and if her cough remains unproductive and weak by next Tuesday, we'll take her for a chest x-ray before considering antiobiotics for pneumonia since those are more likely to cause c-diff.  We also have an appointment next Tuesday with her pulmonologist, originally scheduled as her annual CPAP checkup, but it will be nice to talk to him about our pneumonia concerns as well. 

And as if it weren't enough to have Annie sick, Justin and I have each battled a short but nasty 24 hour bug this week.  At least the snow has finally melted--now I'm just hoping for some blue skies, sunshine, and temperatures to come out of the 30s and 40s.  We know to enjoy spring and summer when they eventually come, because in Nebraska they sure don't last very long!

The Ronald McDonald House

Staying at the Ronald McDonald house has been an incredibly huge blessing!  What a wonderful place!  This Ronald McDonald house here in Columbus is the second largest in the world (next to NYC) and has 80 guest rooms.  The guest rooms are very similar to hotel rooms and they just recently got TVs in every room (but no remotes--that's what Justin is for!) There are several "family rooms" or dens that are VERY nice with TVs or massage pillows, etc.  There's a gym, a movie theater, a very large library, two large laundry rooms, playroom, and a rec room with a pool table, etc.  On the main floor is a kitchen/dining area.  There are 8 full kitchens arranged around a large dining area.  There are refrigerators and freezers--one of each for every 3 guest rooms.  We knew that a full kitchen would be available to us, so we made sure to pack some canned and boxed food that we could easily prepare while here, yet so far all but about 3 meals have been provided for us!  Plus all the kitchen cabinets are already packed full of food for the guests.

Dinning room circled by 8 full kitchens.

One kitchen area where most of the meals are served.

Pantry area with freezers and guests' food lockers.

Outside organizations bring in lunches, dinners, and occasionally breakfasts as well.  Usually it's a church group of some sort bringing a meal in, but we've also been served by a girl scout troop and an honors society.  It has been so wonderful, especially with me being so sick, to not have to worry about preparing something.  These volunteers have been so nice and happy, and most of them ask about Annie and what they can pray about for her.  The entire Ronald McDonald house is run by volunteers which is pretty amazing, especially considering they have 1-2 people at the front desk 24 hours a day!  It takes special people to volunteer such selfless service!

Did I mention that staying at the Ronald McDonald house is completely free of charge?  I hate to think how much an 11 day stay at a local hotel would have cost!  But before you think we've been TOO spoiled... (well, we really have been very spoiled)... let me explain that we do have our own house responsibilities by being guests here.  Guests have to make up their own beds and are responsible for washing their own sheets and towels, taking out their own trash, and cleaning their own rooms and bathrooms.  Guests are also responsible for a daily chore--ours has been keeping the library clean.  We have to dust the shelves, pictures, and blinds, straighten the furniture and vacuum every day, but since the library doesn't seem to get used a whole lot, it's a pretty easy chore to do. Oh, and if you start a book from their library and just don't get the chance to finish it before you go, no problem, just take the book with you--it's yours.  They say they get new books donated all the time.  (Although Justin and I packed our own libraries with us, so we haven't needed to grab anything from the library here, but it has made a nice place to go for a change of scenery.)

The library

Library

One rule is that no food is allowed in guest rooms, and I was a little sad about that at first, but it's worked out just fine.  There was one night I just wanted to watch a movie in bed and eat popcorn and I couldn't, but the rooms feel so much cleaner than a hotel, maybe because of this rule alone.

It's been interesting to be on the opposite side of so many service projects this week instead of being in the church group usually providing the service.  In the guest bathrooms there are even hygiene kits in ziplock bags--I can't count all the times I've helped assemble hygiene kits with my church group for various organizations, and now I'm actually seeing how some of those are used and appreciated.  This isn't a hotel, so there's no little bottles of shampoo and lotion--but it's all been made available in the kits that have been donated.  Seeing all the ways to serve make me want to help out at our Omaha Ronald McDonald house--I think it's definitely an experience that would be neat to share with our church youth. 

One way RMH raises money is by collecting pop tops from soda or formula cans.  When Annie was on pediasure, we easily collected 4 pop tops a day, but now we don't seem to come across many with her on a powdered formula (and because we don't tend to drink a lot of pop).  But if you feel so inclined, it's an incredibly easy thing to do to help support the Ronald McDonald house.  Just collect your pop tops and drop them off at your local RMH.

Here's some other pictures from around the RMH.

This is our third floor foyer as we get off the elevator.  They clearly love their sports here!

This is a family room on the third floor where Justin spent most his time working.

Family room

The playroom

Another family room--actually called the meditation room.  The massage pillows work quite nicely!

A family room in the basement

One of the laundry rooms

Basement playroom

Rec room.  The basement is all themed after the Blue Jackets hockey team.

Rec room

Basement hallway

Here's some pictures of Nationwide Children's hospital.  I'm just now learning that not all Ronald McDonald houses are near the hospitals.  The ones I've seen before always have been, but I just learned a few days ago that Omaha's RMH is about 50 blocks away from the children's hospital.  So we are very fortunate to have the hospital so close.  We've been able to easily walk back and forth to grab meals and take naps.  Although we made sure never to be out alone after dark--all the workers here as well as at the hospital have made a point to let us know how unsafe this neighborhood is and they even provide escort services to help people walk more safely the short distance between the RMH and the hospital.

Main entrance hospital foyer

 If I had any photo software available to me now, I would have glued these following to pictures together to show a panoramic shot of the entire hospital.  It's rather large.

Left half of Nationwide--the section furthest left (the tallest building) is a new addition that should be open in a year.

The other half of Nationwide

A school collected these pop tabs during the year and brought them in one day for the RMH!  The money earned by recycling these pop tabs helps run the RMH and produces enough money to pay the entire electric bill for this 4 story building each month!  So collect your pop tabs for the RMH!