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!

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.

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?

Ugh.

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.

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.

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.

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!

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?

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?

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. 

Enjoy!

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?

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.

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?!? 

Shots

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.

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:

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...

TeamAbility -- Hula Mat

Today at TeamAbility they used a "Hula Mat."  It's a great device that is essential made from a typical gym and circus grade hula hoops.  They worked with Ryan on learning how to roll from side to side.  The mat helps to teach him how to roll.  You can watch the video and I think you'll understand it better than I can probably explain it.  He's done this a few times now and I can already see progress from the first time.

Ryan's First Day at TEAMability

Today we took Ryan to the new therapy location, Team Ability. It was amazing!  Ryan's nurse and our good friend Tami came along.  (If you know Tami, you'll know she's a great photographer.  Well, today, she was a great videographer.)

We had the most amazing day! Ryan took what I'll call his "first steps." I'll apologize in advance to my other children, but these moments were better than my other children's first steps.

If you're only going to watch one video, this next one is the ONE to watch.  

What you didn't see in that amazing video is that he actually picked up his right leg all by himself and lifted it up over the box.  The box is filled with white Styrofoam peanuts, which he apparently really enjoyed touching.  He also "walked" all the way across the box and made his way to the other side.  I wasn't really sure what he was wanting when he got there.  We tried turning him around.  I tried offering him the choice between the Styrofoam peanuts and the river rocks, but he didn't really seem to want either.  We eventually turned him toward the river rocks.  He spent time hovering with one foot in the peanuts and one foot on the rocks, seemingly comparing the two.

If you're one of the people who've wondered how much Ryan thinks, let me assure you:  he was making choices today.  Not only did he obviously know where he wanted to go, but he seemed to know how to make his legs help him get there.  It was awkward motion, but he did it.  And, yes, I cried.  I've never seen my 5 year old son take a step, and today I saw him lift his leg over a box to move himself into the box.  Yes, I cried.  And, I've watched the video more than a dozen times now.

I've skipped a lot of the in between stuff, even though Tami was so awesome at taping every single moment of our hour.  Later, he made his way back to me.  At first I thought he was telling me he was all done, but then he started hugging me.  Well, I'll just let you watch this ...

I think he was sharing his joy with me.  What do you think?

Why Not?

Wednesday night I went shopping for fabric to make a quick quilt.  I had Johnathon and Deborah with me and since I always feel very overwhelmed at picking out colors for projects, I asked for their help.  With a bit of effort ... okay two trips and a near anxiety attack, I found these fabrics and was trying to find three other fabrics to match them:

Deborah and Johnathon were good sports and were giving their opinions.   I had been told my a neighbor who whips up quilts that I needed 3 or 5 fabrics to make a quilt.  After a few minutes, I thought I found a great match for this fabric and received confirmation from the kiddos that it did indeed work well.  However, a grandmotherly ginger shopper with glasses perched on her nose and a brightly colored quilted jacket just couldn't keep silent any longer.  Shaking her head, she said, "No.  These are not fabrics for a man."  Then she proceeded to spend the next 20 minutes explaining to me the art of fabric choices for quilting.  My head was spinning but I was really appreciative.  I really would have appreciated if she had just picked the fabric and put them in my cart.  But, no, after leaving me with advice like, "Don't forget you need texture and movement..." she left. 

I felt more knowledgeable perhaps, but still incapable of matching fabrics.  So, I picked up the two that she used as examples of movement and texture.  Luckily, they came in a "set."  I found all the colors they came in and bought them.  Here's what I  ended up with...

It's nothing fancy, but it was a fun quick project and I'm thankful I was able to do it.   I hope it's enjoyed.

Monsters

Dwight shared this on his Facebook status tonight.  I thought it was so typical of both Dwight and Deborah that I just had to keep it forever.  Here's what he said:

So the other night it was time for my youngest daughter Deborah (age 7) to go to bed, but she was taking her time.
Me: "It is almost 9 o'clock. That is when the monsters come out."
Deborah: "I'm not afraid of monsters anymore. I got rid of them all."
That's my girl...