Tuesday, November 11, 2014

As if "Walking" Wasn't Cool Enough...

Today Ryan went roller skating! Hard to imagine, right? Well, leave it up to the amazing folks at TeamAbility! We were there and they suggested putting his AFO's and shoes on to do the "walking." I voiced my concern that with the button, he might move too fast. I was concerned that he'd drag his feet and legs which could be very bad, especially post surgery. So, Melinda one of his team members said, "How do you feel about roller skates?" Well, I had never even imagined Ryan and roller skates in the same thought. But, of course, they'd have a solution! So, check it out... This is what a glimpse into what it takes to get Ryan ready...

Getting him into the harness...

Going up...

And, steady on his feet...

But, the biggest challenge is almost always keeping his head up...

It's a lot of work, but he loves it and he's always so proud of himself. Of course, we are too! It's just amazing to see the things he can do. If anyone ever tries to tell you that a child in a wheelchair can't do things ... well, don't believe them. They're in there and just cause they can't talk like we do, or can't walk like we do, well, their potential is unlimited. Just like your's and mine. Thanks, TeamAbility! And, thanks to all of you for all your prayers, love and support! And, thanks for always sharing our joy!

Thursday, November 6, 2014

Nothing Keeps Him Down

You probably remember when Ryan first "walked" at TeamAbility.  Well, since his surgery he has been anxious to get moving.  Today Ryan was able to get back up in the Hyssop and "walking" again.  This time he used a switch ("button") to move himself.  Take a look:

This is especially awesome because we have worked for a long time on using switches to be able to communicate and today we integrated the use of a switch with the ability to move.  Oh, it's so exciting and I feel so blessed to have people like the amazing team at TeamAbility to work with Ryan!

Ryan was so excited about "walking" around the room; he made two full laps.  That's a lot of work!  Just holding his head up is a tough job for Ryan.  I'm thankful he's such a trooper!!

Saturday, October 18, 2014

This I Believe

You may be familiar with the 1950's radio program called This I Believe.   Perhaps you already know that NPR sponsors a national This I Believe project and you can read or listen to them by clicking here.  I'd encourage you to read some of the essays and maybe even consider submitting your own.  This week in my college class we were asked to write our own This I Believe essays.

This is the second one I've written.  This one was harder for me than I expected.  It was hard to decide what to write.  That's surprising, right?  Well, if you're interested ... this is one of the things I believe...

I believe in visiting with people, empty handed, but willing to work.  I suppose I can blame my parents for this predicament.  When I was a kid, we would spend hours visiting with people.  Sometimes we would just drop by and chat with them.  I don’t remember my parents ever asking, “What can we do to help you?”  More often than not, mom or dad would just notice something that needed to be done, and we’d get right to work.
As I grew up, I started to notice that other women always brought a little goodie when they’d stop to visit a friend.  One of my first visiting teaching companions showed up at an appointment with a cute, brown gift bag rustically tied with raffia.  As she apologized for having to “throw together something,” the escaping aromas gave away the secret of fresh baked peanut butter and chocolate goodies. 
This wasn’t an isolated incident. Over and over again, as I went to visit families, other women in the companionship would show up with little bundles of home baked goodies.  I started to wonder if I had missed the rule that required all sisters to present goodies when visiting another home.  My empty hands felt insufficient.  
Sure, I was capable of pulling together a meal for the homebound family, but I didn’t feel as confident about whipping up a batch of cookies every time I went to visit someone.  I settled on taking jars filled with small candies, flowers, and re-plated store bought goodies for special occasions.
During one early morning presidency meeting, the President had mentioned that a family in our ward was having a particularly hard time.  When the family didn’t show up at church, I thought about them all afternoon.  I wanted to do something to lift their spirits.  I wanted them to know they were loved!  It hadn’t been too long, since I had taken a jar of candy, I wasn’t prepared to make an entire meal, and since it was Sunday, I couldn’t go buy flowers.  What could I do to help?
I turned to every woman’s inspirational site:  Pinterest.  Like most other LDS woman, I had pinned lots of yummy things; however, for me, Pinterest was much like a library full of beautiful books, purchased but never opened.  This time, being desperate, I was motivated to actually try a recipe.  I decided on the sophisticated sounding Chocolate Chip Bacon Cookies.  The blogsters all described them as “salty and sweet with smoky undertones.”  Who wouldn’t love that? 
Each mound of cookie dough baked to the perfect golden brown with chocolate chips peeking through in just the right ratios.  I gathered my family and we taste tested the cookies.  We each enjoyed a few, warm from the oven, plated a dozen, and proudly delivered the perfectly shaped cookies to the needy family.  I was so proud of my unusual triumph in the kitchen that I dropped off a couple of bundles around the neighborhood.
            The next morning my oldest son noticed an awful smell coming from the cookies.  I thought he was imagining things, but when I tasted one, the smell seemed to reflect the rancid taste.  Oh, my!  The cookies that looked Pinterest perfect yesterday were definitely disgusting today.   I immediately imagined the warning phone calls from one family to another: “Don’t eat the cookies!”  I could only hope my Pinterest failures were enjoyed immediately and not left to stink up their kitchens. 
            One day not long after that experience, I was thinking about a time that me and a friend stopped to visit a pregnant mom with three little children.  As I sat with the mom, my friend noticed the kitchen was in disarray and she started cleaning it as we visited.  We didn’t stay too long, but before we left we had cleaned the kitchen and the family room.  It felt good to leave the mom’s home knowing that she had been relieved of a couple of burdens.

            I realized that while I love the goodies that some women bring, what I do best is visit, empty handed, but willing to work.  

Friday, October 17, 2014

Update on Ryan

Ryan has been running high fevers off and on since last Saturday.  We went to see the Pulmonologist on Tuesday and he gave us a thumbs up.  His lungs sounded clear.  So, we we went to see the Pediatrician today to see if perhaps it was just viral.  Since his oxygen saturation levels were low, the doctor ordered chest xrays and more blood work.

The chest xrays came back with pneumonia in the upper right lung.  Thankfully, we have excellent doctors who talk to each other and we have a plan of action to keep him at home and out of the hospital.

About two hours after we got home, Dr. Rhame called to let us know that it's walking pneumonia which requires a different antibiotic than we had started.  It's not a big deal, just a minor change.  Hopefully, we'll get this guy feeling better soon.  He sure has had a rough few months.

Tuesday, August 26, 2014

Post Op Follow Up

We had our two week post-op follow up with Dr. Magnabasco today.  I did an interview with a nurse while we went to the appointment.  (Ryan has been without his regular nursing care since the first surgery a month ago.  Bad timing.)  I usually do a 2 hour meet and greet/orientation at the house with nurses to interview them, but the agency has been sending out people are not even a close match and I just frankly don't have the extra 2 hours to spend with someone if they can't even work the necessary shifts.  So, I decided having them come along with me to appointments is a good way to see them in action, and I get the added benefit of having someone available to help me lift the wheelchair in and out of the van.  Thankfully, the interview went well and today's candidate may be a good option.

After a long wait, we were greeted in the hall on the way back to our room by Dr. M.  She always treats Ryan like a rock star.  She indicated we were removing the cast and I felt a small surge of panic.  Oh, my!  We were originally told 6-8 weeks, but since we're really good at following directions and he won't be weight bearing, she felt he could be out at 4.  That's just 2 weeks post-op.  I'm a bit nervous about it but she assures me it would take deliberate attempts to mess it up.  Okay, I trust her.

So the cast tech gave Ryan these cool headphones to wear so he wouldn't be bothered by the noise.  (Since he didn't have in his hearing aids, I don't think the noise would have bothered him anyway.)  He looks awesome, right?

Then the sawed through the cast...

.... and pried it open.

Dr. M was right the inside of Ryan's casts are really clean.  Excuse me while I pat myself on the back for that.

Then he cut through the thick layers of foam and lining.  The top part was pretty easy to remove.  Unfortunately, it wasn't as easy for the bottom piece.  It was very awkward and difficult to get the bottom piece out from under him.

I thought Ryan would be thrilled to get the cast off, but once we really started removing enough pieces to wear his legs were no longer in the supported angled position, he cried.  And cried.  And cried.  Apparently, all the kids do.  I wish I had known.  

(This is the hip incision that was done two weeks ago.  It's healing really nicely.)

Remember the purple triangle thing from the hospital?  Well, it was trimmed down to fit him and we're now to use it pretty much anytime he's sitting in his chair or lying down etc.  He doesn't have to have it all the time, but it will help support him and help with proper positioning of his legs for him to finish his recovery.

After Dr. M put it on him, she moved him to the chair for me.  He cried more. It was hard to tell whether he was crying because he was nervous about the movement or if he was in pain.  But, once we got him into the chair, he calmed (as long as we didn't go over any bumps).

Unfortunately, I had to lift him out of his chair and put him in his car seat.   He cried and cried, and this time I could tell it was a pain cried.  This was one of those moments when I really wish we had a wheelchair accessible van.  It sure would have made it less painful for Ryan.

After crying for the entire drive from downtown, I got him settled into bed and gave him pain meds.  He slept for most of the day.  Tonight as he's been waking, he's required more suctioning than normal, which is confirmation that he's struggling a bit physically.  So, I think I'll keep him comfortable with the pain meds tonight.  I thought diaper changes would be back to normal out of the spica cast, but I think it's going to take a couple more weeks.

Well, I'm grateful to be this far in the journey.  Another month will go just as fast, right?  Please pray that his healing will go well and that he'll be stronger when this is done.  And, if you don't mind, say a little prayer for me, too.  

Diapering with a Spica Cast

So, diapering has never been fun, but with a spica cast it takes on a new challenge.  Since it's really important to keep the inside of the cast dry, diaper changes need to happen frequently.   Even with frequent diapers, the risks of getting things wet or stinky and dirty are pretty high.  So, here's what we did this time.

We use an extra small diaper on the inside of the cut out and a really large diaper on the outside.  So, for Ryan who is about 33 pounds and 6 years old, we used a size 3 Pamper for the inside and a size 6 Huggies diaper on the outside.

The two diaper system works pretty well most of the time.  However, if his little boy parts were not positioned just right, we had an issue with urine going up into the cast.  To solve this issue, I used a maxi pad without wings to line the top front portion of the cast, being careful to only stick it to the cast  and not his wound dressing.  This created another barrier.

(If you look right about where the green bar is you can see the maxi pad around the edges of the cast.)

We also found that sometimes stinky and dirty "things" would get on the edge of his cast on the backside.  To make for easy clean up, we just lined the edges with mini pads.  This also helped to prevent the cast from bugging his skin.

I never thought I'd store maxi pads in my family room and I never thought I'd hear myself say to my 15 year old son, "No, that's a mini pad, I need a maxi pad."  And, I never thought my 6 year old son would need them.  But I sure am thankful for their helpfulness!

Thursday, August 14, 2014

Thanks, Nana!

My Mom came out to help with the second surgery.  It sure is a blessing to have good parents that are willing to make sacrifices.  I'm blessed with such parents.  My kids were really looking forward to Nana arriving and although Papa couldn't come as well, we know it was a sacrifice for him to have Nana here and appreciate him as well.

We hope you enjoyed your ride, Nana!

Monday, August 11, 2014

Happy Brithday To Me

I'm 46 years old today.  Another birthday spent at the hospital.  :)

I actually don't mind it and what has made it really sweet, literally, is that one of my super thoughtful friends brought me these:

Aren't I super lucky! That bottom box contains See's Chocolates and since I'm at the hospital by myself with a child who can't eat by mouth, I don't have to share.  That's cool, right?

I also have heard that my sweet husband sent me a beautiful red roses and more chocolates, but a picture of those will have to wait till I'm back home.  I've also received SOOOO many birthday wishes on Facebook, and text messages and phone calls.  I feel very blessed to have wonderful friends and family.

And, while I have a lot of gray hairs and my skin is certainly start to wrinkle, I'm sure grateful to be aging.  It's definitely better than the alternative.  

2nd Surgery

We started the morning really early today.  As you can see, Ryan was still a sleepy head.

(Notice all of his artwork on his cast?  Thanks, Jessie!)

But he really perked up and even showed a sense of humor with the doctors in the pre-op holding area.  He was a little sassy with Dr. Magnabasco and smiled when I called him out on it.   Funny boy.

The surgery started on time and took just a little longer than the first one.  Overall, it went well today.  Dr. Magnabasco did the same thing to the left side as the right.  (He did not have to have the open reduction.)  Unlike two weeks ago, when he came out of the surgery, he had a hard time waking up from the anesthesia.

When he finally did start to wake up, he was very frustrated and seemed to still be in a lot of pain.  Of course, if you look at the picture below, you might be able to see why he's in pain.

Those are pins and plates holding everything together.  Ouch.  (We'll do surgery again in a year to remove all of them.  Ugh.)

You probably already know that green is Ryan's favorite colors.  Johnathon was very bothered by him not having a green cast last time.  It only makes sense to Johnathon that it would be a green cast since that IS Ryan's favorite color.  So, green it is.

We have been trying to stay on top of his pain today, but it's taking a lot more meds.  It's hard to tell whether it's more painful or if he's just frustrated.  Please keep him in your prayers.  Hopefully, this will be a quick recovery and I'll wonder why I fretted so much about this surgery.  Wouldn't that be nice?

Tuesday, July 29, 2014

Update on Ryan

As you might know, I was a little nervous about having this surgery done at this hospital because I had never been here before except for a clinic visit with the Geneticist and a modified barium swallow.  It felt like an old hospital and it's farther from home.  More than anything I just didn't have experience with it.  Change makes me nervous, especially when it comes to Ryan.

I can only think of one doctor that Ryan has seen that we did not like and he's no longer on our team. He might be a great doctor, but his style didn't work for us. We have had good experiences at both of the other hospitals we have stayed at.  We have had great experiences at the two other PICUs we have been in.  One even served me warm chocolate chip cookies before bed.  Who does that?  A great team at North Central Baptist Hospital that wasn't very busy one night.  It's comforting to recognize and be recognized by so many of the doctors when you arrive on the unit.  Obviously it's not preferred to be at the hospital, but if you're going to be there, it's nice to already know at least some of the team.

The team here, including the PICU doctor, Dr. Tong, and nurse Gina were simply amazing!  Dr. Tong spent more than 30 minutes with me when we first arrived in the PICU yesterday.  Dr. Tong took plenty of time double checking all of Ryan's meds and he was really appreciative that I brought a small bag of Ryan's meds with me to the hospital.  (It's actually a one day supply of meds that I take with me everywhere.  They are in prescription bottles and so the labels tell the doctors everything they need to know for ordering the correct meds for Ryan.)  I usually bring with me a list of his medical team, but in an effort to only bring one bag, I left that list yesterday. Oh, how I missed it!  Trying to remember everyone on his team is quite the challenge.  I won't forget it again.

The anesthesiologist also spent several minutes reviewing how things went in the OR.  Ryan needed assistance breathing following surgery yesterday but was able to move to room air fairly quickly. Talking was a lot of effort and seemed to be difficult for him yesterday.  This was probably due to the breathing tube they used during the surgery.  He was vocal very little compared to his usual level.

Ryan and I were able to get some rest last night.  However, he ran a fever of 101 something and his blood count percentages went from 36% to 27%.  His oxygen saturation levels also dropped into the 80's which isn't really that unusual for him.  The fever is not really an unexpected thing for someone who has had such a major surgery and they have started an antibiotic.   They have restarted iron for him due to the blood count changing.  They will be keeping an eye on these issues today.

They are also going to start introducing some foods.  They are going to start with 1/2 of his usual volume of food, but they are going to try Pedialyte first.  If he tolerates it well, then they will move to Neocate Jr, also just 1/2 of the usual volume.  By end of day, hopefully, we will be up to normal volume of food.

He is more alert today and seems comfortable until we rotate. Any movement of his lower body seems to make him nervous and a little uncomfortable.  We rotate him every 2 hours round the clock.  He is really enjoying listening to music from Pandora this morning and likes it when people wish him a Happy Birthday today.  When the Doctor asked if he could sing happy birthday to him, he said, "Yes!" (with his eyebrows) and smiled.  It's the only smile I've seen from him since Sunday.

So, happy 6th birthday to Ryan!  I cannot even imagine, nor would I want to imagine my life without him.  He has brought so many blessings and gifts to our family.  It is truly a joy to be his mom!

Monday, July 28, 2014

One Down

Ryan's surgery went better than expected today.  Thank you for all the love, good thoughts, support, and prayers!

They anticipated his surgery would take 4-5 hours, but they were done in just under 4 hours. They did not need to do the open reduction because their was no need to clean out the hip joint.  This is a great blessing.  Not only did it mean an easier surgery, but the open reduction is also what causes the stiffness post surgery so it should also mean an easier recovery.

Ryan felt frustrated by the anesthesia when he started to wake up and I suspect he probably felt a bit of frustration from having his arms contained by the spica cast and his left arm contained by the IV and his right arm contained by the blood pressure cuff.  But, ever since the disoriented feeling wore off, he has been resting quite comfortably, except for when we rotate him.

Every two hours, we have to rotate him a little to prevent swelling, skin issues, and blood from pooling.  I don't think he's really feeling pain from it, but he seems very nervous about us moving him.  I think I'd be nervous too.

He's talked to Daddy a few times today.  It is taking a lot of energy for him to make any sound at all.  The last time, after a few minutes, I told Dwight he was falling asleep cause he looked like he was, but he immediately started shaking his head no.  He just wanted Daddy to keep talking to him.

We will be spending the night in the Pediatric Intensive Care Unit (PICU) so they can keep Ryan monitored closely.   Please keep us in your prayers.  I have truly felt the strength of your love and support today.

Off to a Good Start

As an answer to prayers, everything has been going really well this morning.  Ryan woke up just before I needed to wake him.  Dropping David off at the airport for his competition this week went super smooth.  The van functioned well enough and we made it here.

It's always encouraging when the nursing staff is truly happy to hear that Dr. ____ is your doctor. This happened twice this morning in two different areas.  When the nurses were taking Ryan's vitals and history, the nurse Toija was so happy to hear that Dr. Benedict is Ryan's anesthesiologist.  She told me how good Dr. Benedict is and how well she takes care of her patients.  I could tell that it wasn't just a line she gave every Mom about every doctor.  It happened again when we went to the pediatric surgical holding area.  Our nurse Artie told us how skilled Dr. Magnabasco is.  Apparently, she treated her son about 12 years ago.

On the way up to the operating room, they took a quick set of x-rays.  Then in the holding area, Dr. Magnabasco came over and sat with me.  She showed me the x-rays and we discussed the plan.  She is hoping that she can do this surgery without the open reduction.  She said that it has a tendency to make kids stiff.

She does not anticipate needing any blood for this surgery, but will want to check for the next surgery.  (Did you know they no longer allow direct to donor transfusions?  She said they found it was detrimental.  Too many people were dishonest about their history just in order to be able to donate, or perhaps to hide their past from those who might ask why they weren't able to donate.   While I like the idea of a direct to donor transfusion, I certainly just want the very best for Ryan.  Hopefully, he won't need a transfusion at all, but if he does, we want it to be the healthiest option for him.)  Dr. Magnabasco and I also reviewed what she'll be doing today and, well, I just love the way she just treats me like a friend.  I love the way she sees Ryan's intelligence and talks to him.  I am 100% confident in her skills today, especially with the added strength and support of prayers.  :)

And, now the waiting begins... four to 5 hours.

Sunday, July 27, 2014

Ryan's Left Hip Surgery

Well, tomorrow is the day.  After a lot of prayers, a few delays, and several blessings, we are confident that even though this is going to be really hard, it is medically wise to do this surgery on Ryan.

They will be doing a femoral varus osteotomy with a hip open reduction and a salter osteotomy.  Ryan will then be put in a spica cast for 6-8 weeks.  What does all of that mean?

Well, the upper end of Ryan's thigh bone doesn't sit where it's supposed to be and thus he has a condition called, "hip dysplasia."  This can be a problem for several reasons:  hip dislocation, arthritis can develop, he can have severe pain, and if it stays out of place for a long time, it may become fixed and more difficult to move.

So, one part of the surgery, the femoral varus osteotomy will help by tipping the upper end of the thigh bone so that the ball points deeper into the socket.  According to the International Hip Dysplasia Institute, this will tip the hip into the socket and redirect the forces toward the middle of the socket instead of toward the outer edge of the socket.  In the picture below, you can see the before on the left and the after on the right.

Note the blue hardware.  Ouch.

The doctors will open up the hip joint and clear out any tissue that is keeping the head of Ryan's femur from going into the the hip socket, the acetabulum.  I believe this will be done through the anterior approach.  If you look at the picture below, the black dotted lines represent where they'll make the incisions.

The Salter Osteotomy means that Ryan's pelvic bone will be cut and the entire socket will be rotated into a better position on top of the femoral head after the hip is reduced into the socket.

Below, you can again see the before and after:

The "pins" that look more like really long nails to me make my heart just sink.  If you've ever had a bone drilled into, you'll know that this are not going to feel very good.

During all of this, it is common for children to need a blood transfusion due to blood loss.  And, it's my understanding the surgery will take about 2 hours.

Once they are all done and have him stitched back up, they will put Ryan in a spica cast.  If you want to see an interesting video about how they put on the spica cast, click here for a Spica Cast Video.   I hope they'll be more gentle with Ryan.

This has been a tough decision to make for Ryan.  It's hard to know how a typically developing child would respond to such a major surgery.  It's really scary to think about how Ryan will respond.  What if this slows his progress?  What if the pain is more than he can bear?  What if he just gets whiny because he has pain and doesn't know how to communicate it?  What if he can never ride a tricycle again?


But, the answer to the prayers has been that this is a medically wise decision.  We know that God has always taken care of us and anticipate He'll do the same for us.  We'd love to have your prayers for us, the surgeons, nurses, and especially Ryan.  We'll keep you posted on how things go in the morning.

Sunday, July 13, 2014

Postponed Again

Ryan's surgery has been postponed again.  The first surgery will now be July 28th and the second one will be scheduled for 2 weeks later.  We'll keep you posted.

Friday, July 11, 2014

Aqua Therapy Day 2

Ryan was so excited all the way to therapy!  Then he went to sleep while we were waiting to get into the pool and we never could get him to wake up fully for therapy.  I hope he's not getting sick.

David and Parker went with us to therapy today to catch it on video.  Unfortunately, there wasn't much to really video other than him sleeping.  But, David did get him to blow a few bubbles one time and I thought you might enjoy seeing them.

Wednesday, July 9, 2014

Aqua Therapy and Anxiety

This week instead of having our usual physical and occupational therapy at TEAMability, we did aqua therapy at the pool at St Mary's University with the therapists from TEAMability.  Ryan has always enjoyed being in water and so he has been really excited all week for today's session.  When we are getting ready to leave, he gets really impatient and vocalizes the whole morning for me to hurry up.  I'm never quite fast enough for him on therapy days.

When we first got in the water, the therapists gave us a Neck Noodle.  I had never heard of this device, and at first, Ryan didn't particularly care for it, but when he discovered it's usefulness, he really liked it.  With the Neck Noodle, He could  really have freedom to float with just me holding on to his back for just a little stability.  (And, it's possible that I might have needed that stability more for me than for him.)

Next we put a life jacket on him backwards and upside down.  You can see what that looks like in the picture below.  Then to give him a little more support, we put a pool noodle in through the arm holes behind his neck.  This really allowed him to float entirely on his own.  In the picture below, you can see by Ryan's face that at first he was a little unsure about it.  I also was a little unsure about letting go of Ryan, especially when the therapist started pulling him through the water by his feet without anyone holding onto his head.  

But, that was only the beginning of my anxiety... 

Then we put him face down in the upside down backwards life jacket, which took a team of people to do.

Then the therapist positioned Ryan at the edge of the pool with his arms holding on to the edge of the pool.  She had her hands over his hands and another therapist was pulling his legs out.  He was positioned kind of like little kids are when they are learning to kick in the pool.  

This wasn't his favorite part of the therapy and it looked like he could just slip into the water. 

This also created a little anxiety for me.  Mainly because I couldn't reach him and the aqua therapist was much more comfortable in this situation than I was.  But, again, my anxiety hadn't reached it's highest level yet ...

While the therapist, Beth, was showing me all kinds of things and positions, Ryan made what we call a raspberry noise.  Ms Beth responded by blowing bubbles in the water, which encouraged Ryan to do it again.  Now, I don't usually consider myself too hovering but I OH, MY!  How I wanted to grab my child!!!  But, I didn't!  And, I'm so glad I didn't.  Ms Beth blew bubbles in the water and Ryan obviously wanted to do the same.  Before I knew it, as she was explaining the positioning of his head and airway, Ryan's mouth and nose was going under water!  And, Ryan was blowing bubbles!

He was so proud of himself!  Then Beth changed the activity to try something different and Ryan was MAD, and that was the end of aqua therapy for the day.  There was no going back.  He was just simply mad.

It was fun to listen to him tell the family about his success blowing bubbles, and his frustration with being moved on before he was ready.  I can't wait for the day when I will be able to fully communicate with Ryan.  I know he will be able to teach me so much.

I'm thankful for Diane, Ryan's nurse, who took these pictures while I was in the pool with Ryan.  We are really blessed to have her as part of our team.  And, I am so thankful for therapists who are talented and willing to believe in Ryan and see his potential.  Because of them, Ryan blew bubbles today!

Thursday, June 12, 2014

What is it?

The kids are always asking for soda and yesterday I was at this great store where they had some wonderful fun flavors of soda.  It's always fun to try something new right?

Tuesday, May 27, 2014

Black Light Play

Ryan is making SO much progress! This week at teamAbility he played with balls under a black light while in the 4-point harness in a kneeling/crawling position. He even rolled the balls to me several times! So fun! Wanna watch?

Thursday, May 8, 2014

Reading Restaurant

Deborah's class did a "Reading Restaurant" tonight.  I wasn't sure exactly what to expect, but it was really awesome!  When we arrived at the classroom, Deborah was whisked away into the classroom while all we waited outside with all the other parents.  After a few minutes of listening to busy, excited sounds escaping from the room, each of the parents were individually invited by the hostess (aka the teacher) to join their little chef.  

Our chef was darling!  It's amazing how big she's getting!

She had prepared a menu for us.  The "appetizer" was a sample of her story writing; the "salad" was another example of her story writing, the entree was a story that she wrote about EACH member of her family.  For dessert, we had a choice of three of her favorite books to choose from.

The video below is her reading one of her favorite books.  You have to turn up your volume pretty loud in order to hear her and there's a lot of background noise; however, if you listen pretty closely, you will hear that she's using a funny voice. It was a book about an Italian family and their pizza business.  It was really, really funny to listen to her talk. 


Friday, March 28, 2014

Need a Good Giggle?

We were sitting at the dinner table and I gave Ryan a few things to play with on his tray.  After several minutes of being entertained, I realized I should be recording.  This went on for several minutes.

Can you watch it without smiling?

Tuesday, March 25, 2014

One Step at a Time

It started with just a simple phone call to a college financial aid office.  I needed to know if there was a reason we didn't receive an anticipated tax form, and I was hoping to learn that I could still use the tuition amount for a tax credit.  What happened was truly miraculous!

To really appreciate this miracle, I'll need to share with you that it's been a really tough few months.  I suppose I had foolishly thought that I had survived my "big test," or "big tests" depending on how one looks at it, and it would be a matter of enduring well and becoming more like Him.  Even as I type that last phrase I think, "How foolish that I didn't assume there would be many more really tough times."  But, I didn't.

This morning I was feeling the pressure of looming deadlines and as my whirlwind of thoughts caught up to me, I felt like I was out of things to do to help.  So I followed the best advice I know, "When life gets too hard to stand, kneel."  And, that's just what I did.  I prayed.  I really plead with the Lord. 

Perhaps you've had moments like that in your life, too, when you have really plead with the Lord.  Perhaps, too, he has answered your prayers, as he did mine today.  Do you ever stop being amazed by His power, His love, and His mercy?  I'm embarrassed to say that I have had moments when I have wondered if He was listening, and moments when I really didn't understand His plan, and even some when I doubted that He had a plan.  Perhaps that is why I am so amazed that He still hears me and answers me when I come to Him.

Today it might have been enough to have just given me an affirmative answer that I can use the tuition as a tax credit.  Instead this gentle, fatherly voice walked me through finding exactly what I needed for my taxes, and then asked me a few, obviously inspired questions.  We then had a conversation that was a miraculous answer to my morning prayers.  While I still don't have all the answers I need, he gave me a message of hope and reminded me that Heavenly Father always seems to give me the next step.  He always lights the way, sometimes it is just one step at a time.

Friday, March 21, 2014

Back on the Bike

Ryan had the opportunity to ride a tricycle at TEAMability this week.  He LOVED riding this blue one.  He was able to keep his head up the whole time and he especially enjoyed being able to ride it outside while the wind was blowing just a bit.

He was even able to move himself on the bike without any help.  Of course, he could only pedal just a little bit, and it was always backwards, but we'll start there, right?  This cool little bike costs a cool little $3,000.  Amazing, isn't it?!? 

Saturday, March 8, 2014


We have a tradition in our family that whenever someone gets a shot (or shots), we let them choose between getting donuts or ice cream.  It was Johnathon's turn to get 3 immunization shots, and let me tell you:  he was impressive!

No one likes getting shots, right?  He was a little freaked out when they first mentioned shots.  It's been a few years since he's had to have any, but then we talked about how we have choices about how we'll respond and how we respond can often affect our experiences.  We talked about how if we get really tense when we get shots, it actually can make it more painful, but taking deep breaths can make it a bit better.  BUT, I reminded him that it was entirely HIS choice how he wanted to respond.  Then I sat down and continued the discussion with our wonderful pediatrician.  Meanwhile, Johnathon CHOSE to watch a BrainPop video on Immunizations. 

When the nurse came in to give Johnathon his shots, Johnathon was totally calm, smiling and really did SUPER!  I was amazed and incredibly proud of him!  Johnathon, being the super intelligent kid he is, recognized by beaming face, and immediately negotiated an extra half hour of computer time AND ice cream.  :)  But, since it was early in the morning, and the HOT sign was on at Krispy Kreme, we stopped by to get a donut and returned to school with the promise of ice cream after school.

After school, Dad suggested picking up all of Johnathon's favorite mix-in's to make homemade shakes at home.  So, that's what we did.  He choose Twix, Butterfingers, hot fudge, caramel syrup, and oreos.  Then he topped his shake with heavy whipped cream and cherries and sprinkles.

Friday, January 24, 2014

Snow Day

Today was a snow day in southern Texas.  No, we didn't have snow, but we did have a lot of ice and since we don't have any thing to deal with the ice and no one really knows how to drive on it, we all stay home.  The whole city shuts down and we get to hang out with our families.

Deborah and I talked about Random Acts of Kindness and what kinds of things we could do for others that don't cost money.  While looking for ideas on line, we found several projects on Pinterest that were lots of fun.  Be watching!  You might just be the lucky recipient of her extra kindness during the next few weeks!

We also found this fun Valentine's day craft from HandsOnAsWeGrow.com 

Remember, I'm not really the crafty type.  So, when I say it was easy, you know it must be E.A.S.Y!  I really liked the way it turned out.  Here's ours:

Wednesday, January 1, 2014

Minute To Win It

Sometimes Mom's Need Help with the Baby ...

Sometimes you need to help organize things, maybe sort the toys ...

And, we always work better as a team ...

Of course, sometimes, Mom may want you to help with dinner. So, you might want to learn how to handle the noodles. But, watch out! Don't burn your hands!

Don't forget the floor always needs to be cleaned after dinner!

But, when dinner's over, the night's not over, there are always things that need to be picked up...

I think you've done well and you've earned a treat. Just one more challenge...