Four 11 and Shrinking?

A Great Quote from Facebook

2012-02-05T10:39:00.001-06:00

Read a great quote today on Facebook:

Isn't that good? I thought it was just too good to not remember and share with all of you. Thanks my friend, Leslie Hollingsworth Reynolds, for sharing this beautiful thought with me!

I hope you're having a wonderful Sabbath. I'm home today taking care of a sick little Deborah.

The Nitty Gritty of the Test Results

2012-01-24T23:39:00.004-06:00

We met with the Metabolic Geneticist regarding Ryan's test results and what to do next. I think I've already mentioned to you that he is a walking database of pure genius. I brought all of his notes and drawings home with me so that hopefully I can relay at least most of what he taught me. I'm sure I'll miss some of it.

Talking with him is like attending a 400 level college class about a subject that you're really, really interested in learning everything about when you're really only ready for the 100 level class. I want desperately to grasp everything he says. I study before I go and prepare for the appointment. I ask good questions, take good notes, and still I leave wishing I understood more. I guess I just wish I could spend more time being taught by him.

Anyway ... let's get to the nitty gritty.

So, you probably already know that Ryan was tested for all kinds of things because he had lost a bunch of his skills. Most of them came back negative. However, at the end of November, the DNA test for Niemann-Pick Disease Type C found him to be positive for 1 gene mutation. "At least a heterozygote for NPC." There needs to be 2 gene mutations to be diagnosed with the disease. The 2nd gene mutation was "questionable."

Interesting to me, maybe to some of you all also, maybe meaningless to the medical team though, was that there were variants of unknown significance on his DNA diagnostic testing. Seven (to be exact) were listed. Since most of you probably won't have a need to see DNA testing, they list the Nucleotide Change, the Amino Acid Change, the Location, the Lygosity, and then a Reference(s)/Comment(s). Kind of cool, right? It's amazing what all they can tell about a person's body now. This is off the current test results topic, but I will want to discuss this with the doc at the next appointment. It should be a good lesson. I can only imagine how much I will learn.

Anyway ... back to the topic... so from that test we knew for sure that Ryan had 1 gene mutation for NPC and a questionable 2nd. So, it was recommended that we do "biochemical testing."

The biochemical testing consisted of a skin biopsy, which we did in early December. With the skin biopsy they are then able to grow the cells (fibroblasts) in the lab and look at their ability to transport and store cholesterol.

So, here's where it gets interesting again ... and confusing ...

The transport of cholesterol in the cells is studied by measuring conversion of the cholesterol from one form to another ("esterification"). If we were to look at only this test result, we are back to a POSITIVE test result. However, the storage of cholesterol is assessed by staining the cells with a chemical ("filipin") that glows under ultraviolet light. This can show whether the cholesterol is being stored inappropriately in lysosomes, the recycling centers of the cell. The filipin staining was NEGATIVE.

So we have 1 + gene mutation, 1 ?? mutation. 1 negative test result and 1 positive test result. What does that equal? Well, it does not = Niemann-Pick Type C Disease.

This is where we get to the real nitty gritty stuff...

Instead the doctor says we then have to go back in the process to say, what affects cholesterol uptake? Why would his be so low if he doesn't have NPC? There could be Mitochondrial Issues. There could be Copper Metabolism issues. There could also be several other issues that "we don't even have human models for yet."

So what does that mean?

Well, first let me say, I'm surprised you're still reading this ... Mitochondrial ... and Copper ... both of these require that we do a muscle biopsy. We're doing that in less than 8 hours. So, check. If the muscle biopsy points us in the direction of Copper, then we may have to do a liver biopsy. Yuck. But, we'll deal with that if and when, not tonight. As for the other issues that "we don't even have human models for yet," he's going to research them. They do have "animal models" for some of the issues. I guess we'll learn more about those things if we need to. Maybe some day there will be a mother blogging about her child being diagnosed with the RyMann Syndrome. Has a nice ring, right? Hmmm... not a bad thing as long as we find a cure, too.

The muscle biopsy will be done tomorrow. Information from it will come back in stages, but all of the information should be back in 4 weeks. I'm off to get some sleep now. I just wanted to share all of this before I forgot it all.

PS If any of my doctor friends are reading this and I made any mistakes, please feel free to correct me. ;)

What's Next

2012-01-19T07:32:00.001-06:00

Monday we'll be meeting with the Metabolic Geneticist to go over the test results and figure out what they mean. It's very uncommon for a carrier of Niemann Pick to be symptomatic and yet Ryan is very symptomatic of Niemann Pick. We also need to figure out if the other children need to be tested to determine if they are carriers of the disease. Could there be other mutations? Could there have been issues with the test sample? Could it have been an issue with the fact that it was done during the holidays? Lots of questions.

We will also be meeting with doing another surgery consultation but this time with the Anesthesiologist. The surgeon heard a "pause" in his heartbeat when we met with her. So, she wants a clearance from his Cardiologist and she wants us to meet with the Anesthesiologist before the day of his Muscle Biopsy surgery, which is scheduled for Wednesday morning.

The Muscle Biopsy is being done as a diagnostic test to determine if he has Mitochondrial Disease. If you're curious as to what Mitochondrial Disease is, you can click here and it will take you to the United Mitochondrial Disease Foundation's website where they describe what it is.

I'm not thrilled about doing the muscle biopsy because it is invasive. However, there are things we could do for Ryan, if it is Mitochondrial Disease that would help him. Therefore, we think it is best to test for it. We've had this test on the list for a while and have left it at the bottom of the stack because we didn't want to remove muscle from his leg if we could avoid it. It seems we're now at the point where it's the next logical step.

So... I'll let you know how the appointment goes on Monday. I'm sure I'll learn lots from the Dr. He's like a walking database of information and he's great at sharing it. I always feel like I learn so much from him. Hopefully, I can understand it well enough to share it with you when I get home. I'll keep you posted.

Today we're off to the ENT for a follow up, the Audiologist for a follow up on his hearing aids, and the therapists for a good workout.

The Results Are In...

2012-01-19T00:10:00.002-06:00

The results are in and they are surprising! Ryan tested positive as a carrier for Niemann Pick Disease Type C, but tested NEGATIVE for the disease. A carrier shouldn't be symptomatic. So the results are shocking.

So, how do I feel?

Surprised. Relieved. Disappointed. Happy. Confused. Hopeful. Exhausted. Thankful.

Have you ever had an undiagnosed condition? Went to the doctors ... or to multiple doctors only to be told they don't know what it is, or they can't find anything wrong with you? If so, you might understand those feelings.

I lived with severe fatigue and was in pain from about 2002 until sometime in 2010. I spent the first few years trying to explain to doctors the pain and the fatigue only to be told they couldn't find anything wrong. It was a hard experience and eventually I chose to learn to live with it. Thankfully, the source of the pain was eventually discovered and I am now pain free. (Whewhoo!)

I remember with great clarity the first day after years of pain that I walked up the stairs and didn't have pain. It was amazing. I remember the first time I went for a walk around the neighborhood with my kids and didn't come home feeling absolutely exhausted. I also remember the first I went to church and didn't come home feeling like I needed to go to bed for a week to recover from the 3-hour block of sitting up. It felt like I was alive again! I wanted to celebrate!

So, now I long for a diagnosis for Ryan. I don't know if he ever has pain. I don't know how long he'll live. I don't know what to expect from his condition.

I know none of us know what the road will bring or how long we'll have our children, but we have some ideas. When we have a newborn baby that is healthy we can anticipate when they will walk. We can anticipate when they will talk. We can anticipate when they will start eating solid foods. We can anticipate seeing them grow up to be adults.

There is a part of me that hopes for a diagnosis that says we will be able to treat his condition. Then we might be able to anticipate that he can walk, or talk, or eat by mouth again.

And, there is a part of me that fears that I won't be prepared for losing him and that hopes that with a prognosis I'll know what to expect. Maybe I'll be able to see the signs and then with those signs I'll be able to steel myself and my family.

But...

I am thankful. Thankful that this is not his diagnosis. His prognosis would not be good with this diagnosis and no diagnosis is better than a poor prognosis. I continue to be thankful for the amazing doctors (and their families) who have sacrificed so much in the pursuit of their educations. I appreciate their friendships, their kindness, and their great intelligences. They all amaze me! And, as always, I am so thankful for all of you, my amazing friends and family. I am so blessed. Thank you for letting me share so honestly with all of you.

Still Waiting...

2012-01-16T23:08:00.000-06:00

I tried calling for Ryan's test results today, but nothing. No answer. The offices were closed today. So maybe tomorrow.

We did have a good meeting with his Developmental Pediatrician. We reviewed all of his appointments over the past six months. We discussed his regressions, his progresses, his therapies, his needs, etc. Then came up with a plan of action. Basically, the Developmental Pediatrician will get Speech Therapy going again for us so that we can work on communication skills more. (We had discontinued Speech Therapy due to the diskinetic movements.) He will also get us in touch with someone who can show us various models of Special Needs Car Seats. We will talk about when we want to make the switch to a Special Needs Car Seat. We don't have to do it right now, but we won't be able to put it off much longer. The disadvantage to doing it is that it has to be installed into the chassis of the car -- not necessarily ideal for a minivan that's already 6 years old. We will also follow up getting the test results copied to his office.

That's it. It's been a long day and I didn't get as much accomplished as I would have liked to have done today. But, I did play Uno tonight with David and Jessica. I beat Jessica, but David ... well, he massacred Jessica and I. Johnathon had a great play date today. And, Deborah and I had fun playing this morning. So, overall I suppose we did the important things.

I hope the results will be in tomorrow.

Humbling

2012-01-13T20:13:00.002-06:00

Recently I received a phone call from a friend that was humbling. It was a good reminder of why I should be vigilant in fighting discouragement, always observant of the tender mercies which are bountiful in my life, and always grateful for the challenges which are mine.

The phone call was not intended to be humbling. It was simply one friend sharing life's experiences, tough experiences. I am grateful for friends who still call and openly share with me, even when they say stuff like "Well, it doesn't really compare to what you're going through."

...

Just so you know, I'm not comparing. I hope you're not either. ;)

Purchasing Anxiety

2012-01-11T07:26:00.000-06:00

Do you ever find yourself shopping only to realize that you're actually shopping for the right size, not the right look or the right fit? Perhaps it's just my old demons, maybe not everyone battles this in a dressing room. I hope they don't. I hope you don't.

Monday night while I was driving home from Austin I thought I'd check out the Outlets. I thought a really good deal was just what I needed to lift my mood. Plus, I received a generous Gift Card to one of my favorite stores, Banana Republic and I can usually count on finding something there to lift my spirits.

Just as I expected, BR had lots of great clothes! I was hoping to find some tops, but I mostly found pants. Ryan patiently looked around while I gathered an entire armful of things to try. When we finally made our way back to the dressing room, I tried on more than a dozen pairs of pants and felt like a two-ton Betsy in each pair. Crazy. I've gained 1 pound. That's still significantly less than I weighed a year ago. So, why is the mirror reflecting back this HUGE image?

I struggled with all the numbers ... the pant sizes, the current weight, the past weight, the weight gain, the weight loss ... and eventually had to tell myself that 1 pound weight gain could not make me a two-ton Betsy. As I stood in the mirror, trying to make myself realize that I wasn't making any sense, I realized that I was shopping for a size. And, even more significantly, I was hurting.

Scrum. I am hurting.

We met with the Pediatric Surgeon on Monday to discuss the planned muscle biopsy. They want to do a muscle biopsy to determine if Ryan has Mitochondrial Disease. I wish I had taken the drawing off the table so I could scan the image for you. I have it seared in my head. It seems so large compared to his tiny little legs.

To test for Mitochondrial Disease they need two square half-inch sections of his muscle. They will remove it from his right muscle. It will be an outpatient surgery and it requires general anesthesia. Because the Surgeon heard a "pause" in Ryan's heart, she has requested a clearance from his Cardiologist before the surgery, and also wants us to meet with the Anesthesiologist before the day of the Surgery, just to be safe.

This is a really invasive procedure and the muscle will not regenerate. I don't like the idea of him having Mitochondrial Disease, but it wouldn't be any better or worse than him having Niemann Pick Type C. (Yet, what they're testing for is to see if he has both NPC and Mitochondrial Disease.)

When we first talked about all these tests, the Metabolic Geneticist had said that if we got a positive test on one, then we wouldn't do this test. However, when the first NPC test came back positive, he said to go ahead and meet with the surgeon for a consult regarding this one. So, after our consult, I called him to say, "We've met and we've scheduled the surgery. Do you still want me to go ahead?" His answer was a firm yes.

I'm holding out hope that it will change once we have the final test results for the Niemann Pick C.

Speaking of the test results for Niemann Pick, we received word from the Mayo Clinic yesterday that as of yesterday afternoon, the test is not finished. They anticipate it will be finished by this Friday. I'll be sure to let you all know as soon as I hear results.

As always, I appreciate your prayers, love, and friendship. Perhaps more than words can ever express.

PS Speaking of prayer, there's a great video I watched this morning on Prayer, here's a great video I watched this morning:

5 Weeks

2012-01-09T08:00:00.000-06:00

It has been 5 weeks since Ryan's skin biopsy and the test results are not back in from Mayo Clinic. They should be back anytime now.

We are meeting with a Pediatric Surgeon today to discuss a muscle biopsy. The muscle biopsy will test for mitochondrial disease. We had discussed perhaps not doing the biopsy since he had a positive test result; however, when I spoke with Dr. Gibson's nurse on Friday, she said he still wants the muscle biopsy.

I will schedule the biopsy today; however, I'll confirm with Dr. Gibson again before we actually do the biopsy. Hopefully, we'll get the NPC results soon.

Les Mis

2012-01-05T23:53:00.000-06:00

David, Jessica and I went to see Les Miserables tonight. It was great! except for one scene, which I wish they would make more family friendly. Perhaps I'm old fashioned, but I would not go see such a scene on the big screen and if I had known ... or remembered it being choreographed in such a graphic way, I would not have gone to see it at the Theater either. I just don't think it's necessary. I was embarrassed to be there, and even more embarrassed to have my children there. Shame on a theater for rating it as a family friendly show. It was not family friendly.

Goofy Munchkins

2012-01-04T11:15:00.000-06:00

On school days, Johnathon and Deborah like to take Ryan out to meet his bus for school. This morning was a typical school day. EXCEPT that when we went outside I look down to see this:

I should also mention that her t-shirt was on backwards, and she had on some funny pants, and pool sandals. She was quite the site. The glasses are 3-D movie glasses which have had the lenses removed.

I think the bus drivers at least got a good smile and chuckle for the day. :) I know I did.

Happy New Year

2012-01-01T07:37:00.000-06:00

Well, no one here can hold still even long enough for a quick picture. But, hope you all have a happy new year!

Going to ...

2011-12-30T22:40:00.000-06:00

When I was saying prayers with Deborah tonight she said, "Mommy, can you not go to cancer any more? I don't like it when you go there. It takes too much time. I don't get to see you very much when you go to cancer."

At first I thought maybe she was talking about when I go to MD Anderson for my checkups, but as I talked to her for a few more minutes it became apparent that she was talking about the time period when I was first diagnosed and treated for Cancer.

I too hope I don't "go to Cancer" anymore, Deborah.

Christmas

2011-12-25T10:47:00.000-06:00

Remember when you were a child and it seemed like Christmas would never come?

Christmas at my childhood home was magical. I grew up in the wintery wonderland of Indiana where it seemed we always had the perfect white Christmas. Even more awe inspiring was my parent's ability to weave the true meaning of Christmas and the childhood fantasy of Santa Claus into the everyday moments of the whole season.

I love thinking back to the anticipation I felt of wondering what I would find in the stocking each day. I no longer recall whether a new present would arrive in the stocking every day, or just on random days. I only remember that they were there. Stockings hung with great care and tiny presents anonymously delivered.

One of my favorite memories was one of service. I don't remember all the details. I just remember that another family had lost their home. My parents, having experienced the same before, gave us the opportunity to pick a gift to give to the family. One of our gifts. We didn't go to a store to buy something for the family. We went to our tree and picked a wrap present. It was a sacrifice that was personal. I didn't feel a loss. I felt thankful to share.

Years later I am thankful to my parents for the magical Christmas memories. I am thankful for the years of waking up to the sounds of Santa's reindeers and a house full of Christmas lights at the break of dawn on Christmas morning. I am thankful for all the nights we drove around looking at lights throughout the city. I am thankful for all the beautiful reminders of Christmas in every corner of every room of my childhood home. Most of all, I am thankful for the example of Christlike service that I saw and continue to see in the lives of my parents. It is the Spirit of Christmas. I pray the spirit of Christmas will permeate in our lives.

Legendary Holidays

2011-12-23T16:11:00.000-06:00

One of our favorite holiday traditions here in San Antonio is Westin's Legendary Holidays. We discovered it a few years ago and every year since several of the kids insist on going again. I'm so glad that at least some of the kids enjoy it because I love it!

This year we actually went on two different nights. The first night I was mistaken about the time and so we missed the walk with the story teller. Instead of just leaving right away, we visited with Santa, decorated gingerbread cookies, and made some wooden creations.

I'm so thankful that my kids are so patient with me and such great sports about things. Even though things didn't work out the way we expected them to, we still had a great time! Maybe even more fun than we would have had if things had happened as planned. The best part: we went back the next night for all the events!

...

The Inevitable Question

2011-12-19T21:48:00.002-06:00

It happens with every kid & tonight it was Deborah's turn:

"Mommy, why are all the other mommies bigger than you?" :)

Gingerbread House Time

2011-12-18T21:30:00.000-06:00

Today was the day. We built the annual gingerbread house and I let Deborah and Johnathon take the lead. I figured it couldn't go too bad, right? Afterall, I bought a kit. Actually, I bought 5 kits. Target had them on clearance and Deborah was so cute. (Dwight says I must have been feeling guilt about something. A story for another day, perhaps?)

All was going well and Jessica and David were kind of helping them along. THEN, one of the gingerbread men had an "accident" ... and it all went downhill from there.

I don't know what happened, but Deborah announced that the gingerbread man had "fallen to his bloody death." Oh, boy.

Soon after that, there was another bloody mishap at the gingerbread house.

When I asked Deborah why all the bloodshed, she said, "You said we probably wouldn't be able to make it look just like the box."

Hmmmm.... I don't think THAT'S exactly what I intended for her to take from my statement.

While the rest of the kids made the gingerbread house, Ryan rested peacefully, he's not feeling very well this week. But, the good news is that he hasn't had a seizure since the 13th. FIVE full days of being seizure free! Whewhoo!

And, finally, this week at work, we had our Christmas party and did a gift exchange. My Secret Santa gave me the most beautiful gift! And, in it were the most wonderful pajamas and socks. I think I'd like to live in these pajamas all the time! The pants are SOOO soft and the socks are super soft and cozy. Thanks, DJ! You are awesome!!

Santa came early to our house!

2011-12-15T23:43:00.000-06:00

What a fun night! Some kind Santa dropped off a beautiful bag of gifts at our door tonight. It was so fun to watch the kids pull the gifts out of the bag and place them under the tree. :) It was a very thoughtful act and very much appreciated. The children were SOOO excited. It's fun to see even the teenagers be excited about things.

Whoever you are ... thank you!!

Just thinking about....

2011-12-13T14:40:00.000-06:00

I was just thinking about when we were last in the hospital. A nursing student came into meet Ryan. She was from another country. After she finished her exam of Ryan, she asked me if I believed in God. I told her that I did. She then testified to me of her faith that God could help sustain us and lift our burdens. She then asked if she could offer a prayer for Ryan. I, of course, gratefully accepted. It was a beautiful prayer.

She and I did not belong to the same church, but we both believe in Jesus as a Savior and as our personal Redeemer. We both believe that He can heal our hurts and we both believe in the power of prayer.

I am grateful to this woman that she was willing to share her faith with me and Ryan. It brightened my day that day, and again today. It reminded me of truths that I know. I hope it does the same for you today.

A Very Foggy Morning

2011-12-13T09:00:00.000-06:00

Doesn't it seem like the perfect day to curl up on the couch with a snugly child and a cup of a hot chocolate and a few good books?

Ryan's First Birthday Party

2011-12-10T20:00:00.000-06:00

Ryan went to his first birthday party at a friend's house tonight without Mom. It was a pajama party for Diego, Nelda's son. (You probably know that Nelda is our friend and Ryan's nurse.) I have to admit I was VERY, VERY nervous about him going without me. I knew he was in good hands with Nelda, but I was still very nervous. I'm nervous about all my kids going to their first parties without me. So, why should anyone be surprised that I felt anxiety about Ryan going to his first party without me?

I tried to be cool about it, but geesh! I couldn't wait until it was time for me to go get him! When I did pick him up, I walked into the house and he was sitting in his wheelchair at the table. Diego's older sister was next to him on one side and Grandma was on the other side. He was obviously enjoying himself and all the fun sounds. There was a house full of people and he was so happy!!

On the way home, Ryan was so talkative and he insisted that I talk or sing all the way home to him, which was about a 45 minute drive home. It was wonderful to see him so happy and talkative!

Dwight is in China

2011-12-08T14:25:00.000-06:00

Dwight is spending several weeks in Shanghai, China doing some consulting work with his current team. It's unfortunate timing, but thankfully he'll be back home just in time for Christmas.

If you know Dwight, you probably also know that he is extremely adventurous in eating. So he's enjoying all kinds of fun things like ... chicken foot, cow stomach, chyo do fu (also called stinky tofu), durian fruit, fish eye, shrimp eyes, and cow eye. (The picture below is either fish or cow eye. I'm not sure which, but does it really matter???)

Dwight says shrimp eyes taste nothing like fish eyes. He also said cow stomach tasted a lot like chewing on a rubber band.

I'm not sure I'd want to eat much in China. I suspect I'd be eating a lot of plain rice. I'm glad he enjoyed himself.

The Skin Biopsy

2011-12-05T23:36:00.001-06:00

Ryan's skin biopsy went well today. He was very irritated that we woke him up, and he screamed about the numbing shot. (Anyone who has ever had one of those shots can't blame him.) They took a tiny bit of tissue from the back of his arm. The good news is that the Dr anticipates the test results will be back within 4 weeks or so. That is MUCH better than the 6-12 weeks we had been told it would take.

(hmmm... awkward picture)

The other thing that I learned today which is really good news is that although this disease can affect any of the children in the family, it typically strikes at the same age within a family. Thus, where Ryan was symptomatic at birth, it is unlikely that any of the other children will test positive for the disease. They may test positive as carriers, but it is highly unlikely that they will test positive for the disease itself since none of them have exhibited any symptoms. Whew! That was a HUGE relief.

After the appointment, Ryan returned to his usual self. You can see from the picture below his new hat device that the school OT came up with to help him keep his head up. It's really quite brilliant!

Well, Ryan was totally playing with me after his appointment today. He seemed to think it was funny that he had figured out how to get his head out of the hat. Smart boy.

Facebook Response

2011-12-04T09:10:00.001-06:00

I woke up this morning thinking about the possibility of a diagnosis for Ryan and had so many questions. The think that lingers in my mind is that with every profile I read, the child was already meeting milestones. Ryan has never met one of his milestones. I know that sounds really negative and I don't actually mean to be so negative about it. Yet, there is no way around that. He simply hasn't. Yet, he was slowly progressing upwards for almost 3 years until this past June when he suddenly and quite drastically lost so many of his skills.

Take a look at this picture taken in November of 2009:

See how Ryan has his head held up? Although he's 2 years older, he can't do that anymore. He can't hold his head up.

I woke up thinking about all this and I went online to look for new information. If you haven't realized this yet, I thrive on information. And, let me tell you ... I have lots of new words that I need to more fully understand. While online I also did a quick check to see if anything new had posted on Facebook, and I saw this response from one my favorite people, Howard Hurley.

I should first tell you a little about Howard Hurley. He is a great big guy, and he was my Dad. No, not my dad in real life, but he was my Dad on stage in a show called Saturday's Warrior that we did back in the early 80's. I was 14 years old, but played a little 9-year old girl who carried around a monkey-face sock doll. In real life, he is a Dad. A great Dad to a lot of kids. And, you can tell that he's a great Dad by what he posted as a reply to my posting about Ryan's positive test. Let me share it with you:

"Tina, the enemy you understand is better than the enemy you don't We know Ryan's disease is heartbreaking, but you must know you have a "cheering section" that think about you and your family often. If this is the diagnosis, well, it's pretty devastating, but it's a known quantity, and somehow, you have to deal with it. And I know you will, with your characteristic good attitude. I hope you find peace through this experience."

I started to respond to him on Facebook this morning and then realized it was too long and I wanted to preserve what I was typing as a reminder to myself for days ahead. There might be a day when I need to remember. Lately, when I've been reading in my scriptures, I've noticed that word a lot... Remember.

So, "Dad", this is my reply to you...

Thank you for your post. I definitely think knowing is better than not knowing. You're right that I wouldn't choose this as the diagnosis, but I wouldn't have chosen any of this for him. Yet, I know that Ryan chose to come to earth even though he knew the package he was choosing. It has been such a comfort knowing that. I cannot imagine life without having Ryan, even if it will be brief by our earthly standards. I am thankful to know that he will be a part of our eternal family. I will give thanks for each and every day that I am able to enjoy him.

I also know the peace and comfort will come. We are promised that He will comfort us and I know by experience that His promises are sure. I'm so blessed to have so many who are willing to succor me and bear my burdens with me that there are truly times when I don't even feel the weight of them. Thank you for being willing to be in my cheering section! Thank you for your confidence. I have learned strength and character from watching you and others like you! Thank you!

Lots of Curls

2011-12-03T13:05:00.000-06:00

Jessica curled Deborah's hair last night. Doesn't she look adorable?

Neurologist Appointment

2011-12-01T15:00:00.000-06:00

We had the much anticipated follow up appointment with the Neurologist today. I thought this day would not come soon enough. Ryan's hand and arm has raw spots on it from the constant rubbing across the sheets.

As I always do, I first gave the Neurologist an update on what's been happening at our other appointments. I told him about Ryan's ABR test and how it showed that Ryan has lost another 20% of his hearing. I also showed him the results of the swallow study and how they are no recommend that Ryan now not have anything by mouth due to the risk of aspiration. We also discussed "Vital Stim", which is something that his Speech Language Therapist is trained to do which might strengthen his swallow muscles. (The Neurologist has not seen it work in his patient group, but isn't opposed to us trying it and didn't think it would increase his seizures.)

Then we discussed the recent hospital stay, which he was well aware of since he had received so many calls during his vacation about Ryan. (I really appreciated that he didn't seem to mind at all.) We discussed all the spastic movements, but then he said he wouldn't call them spastic. He said they are actually "diskinetic movements." So we talked about those terms for a while and what each of those meant. I love that he explains stuff like that to me.

That brought up the phone call regarding the Niemann Pick Disease. So I told him about that. He said it would actually explain a lot. If he has NPC, it would explain the recent burst of diskinetic movement. There could be 2 different reasons for it. One possibility is that they gave him a lot of Ativan at the hospital for the seizures. Average children take time to metabolize it and withdraw from it. If Ryan has a NPC, he would have a more difficult time metabolizing it and it would take him long to withdraw from it. The withdrawal from it could cause the diskinetic movements. The other reason is that the seizure meds that we have Ryan on would not be metabolized in the same way as they would be for someone without NPC, perhaps not even in a predictable way. A diagnosis of NPC would also explain why since June we have seen such a loss of skills.

We then went over his recent tests. His Lamictal levels were slightly high at 22. His EEG showed generally slow waves, but looked surprisingly good. But we obviously had it on during the wrong 24 hours. His MRI didn't not show typical storage disease symptoms, but did show "a reduction in white matter, a volume loss." When I confirmed that the MRI did not look symptomatic for Niemann Pick, he said that it didn't, "But Niemann Pick is very hard to diagnose in life. It's usually diagnosed during an autopsy."

After that we discussed Ryan's medicines and how to control the diskinetic movements. He lowered Ryan's Lamictal levels and increased his Keppra levels. He then assured me that it would slow by Saturday. He said if it hasn't slowed or stopped by Saturday I can call him. Trust me, I will, too.

Now, to just make it through till Monday when I can hear what Dr. Gibson has to say.

Where's Deborah?

2011-12-01T10:57:00.000-06:00

I went into Deborah's room last night to say prayers with her and she wasn't in bed. Weird. Where was Deborah??

Then at the end of Deborah's bed I saw this:

And, sure enough ... she was curled up in there.

Sweet girl.

She even stayed there all night long. She's convinced that with prayer and that tent she will ALWAYS have good dreams. Hmmm....

A Positive Test

2011-11-29T19:42:00.000-06:00

Remember all the tests that Ryan's Metabolic Geneticist had ordered at the end of September? Almost all the tests had come back several weeks ago and they had all been negative. I had followed up on them again a couple of weeks ago and they still hadn't heard back on the last two tests. Honestly, I just didn't think we were going to find anything.

Then on Tuesday, an unexpected call came. The nurse said, "Mrs Mann, do you have a few minutes?" A test came back positive. I'm a little shocked. Ryan tested positive as a "carrier for Niemann-Pick C-1. Heterozygote. One copy not 2. A carrier, not diagnosed with the disease." She then read to me, "Biochemical testing is recommended to confirm disease diagnosis."

A few days and several calls later, we have the next steps planned out and at least a rough understanding of what will take place over the next few weeks.

Ryan will have "biochemical testing" done on Monday, which starts with a skin biopsy. It's my understanding that it will take any where from 6-12 weeks to get the results back.

I'd like to tell you all about the disease and educate you about it, but instead I think I'll just give you some good links. I'm sure you can understand.

National Niemann-Pick Disease Foundation

National Institute of Neurological Disorders and Stroke

This one is my least favorite, but it is very informative.
PubMed Health

In addition to the skin biopsy, Dr. Gibson is still scheduling a muscle biopsy. We are waiting to hear back from the surgeons for a surgery consult. It will be done as an outpatient surgery. The muscle biopsy will not confirm diagnosis of the Niemann Pick disease. Thus, he is still looking for other diseases.

In looking at the few profiles I've been able to find online of children with NPC, I haven't found any one yet that was diagnosed with NPC who wasn't walking and talking first before they started losing their milestones. So, I guess that's something I'll have to ask the Doctor about. Is it just that Moms with kids like Ryan don't blog about it? I haven't found them yet. Or, is it, well, that they just don't survive the disease long? I have so many questions. But, as one of our Doctors said, we should wait to confirm the disease. Then he said, "However, it's not typical for a carrier to be symptomatic for the disease like Ryan is."

It's odd to think we may actually have a name for Ryan's issues. It's obviously not the ideal diagnosis, but I am thankful for great doctors.

Great Scripture

2011-11-28T06:35:00.001-06:00

I was just reading my scriptures this morning. Alma 37 in The Book of Mormon.

My daughter gets up each morning at 5:45 to go to seminary to study the scriptures. Each year they study, in-depth one book of scriptures. They have certain scriptures called "Scripture Mastery Scriptures" that they memorize and really study. They have important concepts in them.

Alma 37:35 is one of those. It says:

O, remember, my son,

(Alma is the name of the father and he's talking to his son, Helaman)

and learn wisdom in thy youth;

yea, learn in thy youth to keep the commandments of God.

Great advice, right?

Well, I think there's an even better scripture in it's shadows just before it.

Alma 37:34

Teach them to never be weary of good works,

but to be meek and lowly in heart;

for such shall find rest to their souls.

Okay, maybe not better, but at least equally as good. :)

Happy Thanksgiving

2011-11-26T22:06:00.001-06:00

Am I the only one who is finding it hard to believe that it's already November? And, not just November, but it's already Thanksgiving? It seems just yesterday that it was June 30th. It's hard to believe that almost 5 months have passed so quickly.

In some ways I still feel like the child who wishes time would speed up so that Christmas morning will come when I open my eyes, and in other ways I wish I could just hold the hands of time so they would just almost not move. I suppose it's good that I don't get to choose how to control time.

Anyway ...

I took the other children to see The Muppets Movie. I love happy movies. It's a happy movie. I highly recommend it.

I wanted to go see Hugo also since I had read the book "The Inventions of Hugo Cabret" to the children ... actually twice. It's a great book. But, when it was time to go I was just too tired and decided to stay home with the younger kids. It was the wise choice for me to get some rest, but I'm disappointed that I didn't get to see the movie. David, Jessica & Dwight really enjoyed it a lot. (I hear that if you haven't read the book, you may not like the movie very much.)

We had a really yummy Thanksgiving day of food. We choose not to overdo the food this year. It was a nice choice. Sometimes Dwight and I spend so much time cooking that we don't spend as much time with the kids. We noticed in the past that the kids prefer us to spend more time with them. It's more important than the food to them. I think we found a really good balance this year. Jacob commented that one of his favorite things about our house on Thanksgiving is how we graze all day. We certainly did that again this year. It was yummy! I'm very blessed to be married to a good cook who loves food.

Ryan's spastic movements seem to be slowing down a little. I wonder if it's like seizures that can come and go for no reason. It makes me nervous. I'm very anxious to talk to his Neurologist this week. I should probably take a peace offering for interrupting his vacation so much during Ryan's hospital stay. I know it's his job, but he could have just tried to call back once and then said, "Oh, well, I tried." But he didn't. I really appreciate that he kept trying. Maybe some homemade toffee would be good?

That's just one of the many things we have to be thankful for at this Thanksgiving season. I believe it's important to always have an attitude of gratitude, and know that in my life when I count my blessings, it helps me to remember my blessings. I hope that you already know that I am thankful for you, my friends. I hope you already know that I am thankful for my family, my faith, my God, and for all that I have.

I pray that you,too, are safe and blessed this Thanksgiving season!

Home from the Hospital

2011-11-23T23:16:00.001-06:00

Well we made it home from the hospital last night around 8 pm. Ryan is stable and not seizing. However, he is having constant "spastic" activity. Unfortunately, his Neurologist is out of town for the week and is traveling some where without good cell phone reception.

On Tuesday they did a 3 hour MRI of Ryan's spine and brain with and without contrast. Beyond the new seizure meds, the MRI, the lamictal level blood test, and the 24-hour EEG, the Hospitalist felt there was really nothing else they could for Ryan. So, we're home waiting to see the Neurologist when he returns.

The spastic activity means that Ryan's arms are constantly flexed and moving, and his upper body sometimes jerks like he's trying to sit up. When it intensifies, his lower body stiffens and he "scissors" his legs. ("Scissors" is the term used to describe crossing at the ankles.) The spastic behaviors are obviously very uncomfortable to Ryan. He's not resting well. His eyes are bloodshot from being so tired. The nurse today suggested that we alternate Tylenol and Motrin. That seems to give him some relief.

So, what's causing the spastic behavior? Well, we don't know for sure. It could be whatever disease or syndrome is causing everything else. Or, it could be that the 3+ hour seizure he had on Saturday did nerve damage. Hopefully the Neurologist or the Metabolic Geneticist will have some input next week. And, more importantly hopefully we can get Ryan something before next week that will give him some relief from the spastic behaviors.

A Quick Update

2011-11-21T23:49:00.001-06:00

Ryan is having a much better night, thankfully. The doctors have ordered a MRI with and without contrast of the brain and the spine tomorrow. Hopefully, the night continues to go this well so that we both can get some sleep. Thank you all for your kind words, prayers, and your support. I sure appreciate it!

A Long Night

2011-11-21T09:03:00.001-06:00

Ryan's meds have been adjusted. They are keeping the Lamictal the same, but adding a dose of Keppra to his daily meds. Last night the thrashing about starting again in mid afternoon and continued to increase in intensity. I was hopeful that the Keppra would calm it, but at 1 am when he started crying with each cycle of thrashing ... and there were definite cycles, I finally requested Ativan for him. It was a low dose of Ativan, but it did the trick. Within just a few minutes, he was resting peacefully. It was such a relief to see him calm and at rest.

Today the Hospitalist (Ryan's Doctor here at the hospital) is going to be speaking with Ryan's Neurologist and his Metabolic Geneticist. Hopefully, they will be able to coordinate the best plan for Ryan. I think I will also put a call into the Metabolic Geneticist just to make sure he has all the most recent information since our last visit, and I'll call Dr. Rhame to give him an update.

An EEG and More Crazy Seizures

2011-11-20T13:45:00.001-06:00

On Friday morning we went to the hospital to have Ryan set up for a 24 hour EEG. When we scheduled this test, Ryan was having 8-9 seizures each day, but then his Neurologist adjusted his meds and during the past few weeks he's only averaged 1-2 obvious seizures every few days. (I say obvious because it's always possible that he's having "subclinical" seizures, essentially meaning seizures with no outward symptoms.) I'm not sure that we'll get any information from the test, but we'll see.

It was wonderful to see that the technician who set up his EEG was a familiar face. Susan didn't immediately recognize us, but after I commented on remembering that she volunteered for the Leukemia and Lymphoma Society (LLS) she remembered me, mostly from my "soft, quiet voice." I remembered her because she does a lot of work with LLS, and that just makes my heart swell. They are the organization that sponsored my chemo, meaning they paid $5,000 towards the cost of chemo. It covered some of the costs that my insurance didn't cover. It was such a blessing!

Once we had Ryan's head all wired up, we were actually able to return home for the day. The entire day consisted of someone having to hold Ryan's hands. He seemed very bugged by the "Brain Monitor."

When I took Ryan home, Johnathon and Deborah were immediately concerned and interested. I always explain things in great detail to the kids, both in real medical terms, but then also in terms they can hopefully easily understand and grasp. I called it a Brain Monitor because I knew they could relate it to the heart monitor he had recently had. Then I explained that it was very important to make sure Ryan didn't detach any of the electrodes so that we could get a good "feeding." I meant to say "reading." Friday night when I was saying night prayers with Deborah, she prayed that Ryan's Brain Monitor would get a "good feeding and not be hungry." Nice.

We made it through Friday night and arrived back at the hospital on Saturday morning at 8.30 with only 2 of the electrodes detached. They checked to make sure the recording worked, but we were not given any information on whether or not the EEG recorded any seizure activity. I don't think I'll hear back on that until I talk to our Neurologist. Our next office appointment isn't scheduled until the end of the month.

So, then we went home. Shortly after we arrived home, the arm thrashing that Ryan had been doing all Friday night became more intense and his upper body became involved. It didn't take long to recognize that he was probably having some sort of neurological issue. From about 9-12, he cried nonstop. Nothing helped. He normally calms to a warm bath with Daddy. Nope, not this time. His legs were stiff as a board from just above the hips, and scissored. His upper body was fighting with super human strength.

And, my big mistake for the day ... checking to see if he was teething. I'm lucky I still have a finger tip. What was I thinking??? If you EVER even suspect seizure activity, DO NOT STICK YOUR FINGER IN THE PERSON'S MOUTH!! They really do have super human strength. Ouch! That hurt!

So, at noon, I called the doctor and he said to take him to the ER. I walked into the full Children's ER and they immediately walked us back to a room, with 3 nurses and a Doctor. They all immediately recognized it as seizure activity. How did I not know for certain that it was seizure activity? Why did I wait so long to know for sure?

The ER Doctor was also a familiar face. She has treated us before in the ER. She's a good doctor. We had to stabilize and calm Ryan first. His heart rate was staying above 150 and his oxygen rate was staying below the low 90's. Once stabilized, she ordered scans and x-rays to eliminate the possibility that the seizures were being set off by an infection or a fracture, etc. They gave Ryan a drug called Ativan, which also sedated him. Then they did full body x-rays, blood work, urine collection by catheter, and examined him quite thoroughly. They didn't find any infection or fractures.

As soon as the Ativan started to wear off, the same seizure activity immediately started again. It didn't have quite the same intensity, but it was close. Another dose of Ativan brought the same calming effects. A consult with a Pediatric Neurologist (unfortunately, not Ryan's usual Neurologist) brought a large dose of Keppra. Ryan took Keppra when he was much younger, but it was replaced with other seizure meds when his seizures changed characteristics.

So, they admitted Ryan overnight . He slept off and on through the night. He is awake today and his upper body is again thrashing, for lack of any other term. He doesn't seem to enjoy this. I hope they are able to figure out what is going on for him.

The Hospitalist is also a Doctor who has treated us before and recognized us, and impressively remembered a lot of details. He is trying to reach both Ryan's Neurologist and his Geneticist to see if they want to do an MRI. If we are doing an MRI, the Geneticist may want to order a muscle biopsy at the same time.

Keeping all things in perspective ... we are very blessed to be surrounded by talented people who have sacrificed much to be able to help us. We are very blessed to be cared for by so many people who do their jobs so willingly and so kindly. I am thankful to you for all of your prayers, and would once again ask for your prayers that the Doctors will be able to help Ryan.

Check Him Out..

2011-11-12T23:16:00.001-06:00

This morning we got an email from a friend letting us know that Living Social had this advertising campaign running today. What a fun surprise! This picture was taken when David was performing at LOL Comedy Club.

H

2011-11-12T19:56:00.000-06:00

Every night Deborah prays. Every night Deborah prays that she will not have bad dreams. AND, every night ... without fail ... Deborah prays for her friend H-y. She has loved H-y for the past few years now. She just thinks he is the best guy ever! I have to agree that he is a pretty great young boy! He's such a gentleman: polite, cute, and really funny!

Well, today he had a birthday party. Starting several hours before the birthday party, Deborah started asking me how much longer till the birthday party. She, of course, wasn't content with "a few more hours." No, she wanted an exact count down, "4 hours and 11 minutes." ... "3 hours and 48 minutes" ... "3 hours and 24 minutes" ... "2 hours and 56 minutes" ... Well, hopefully, you get the idea. The countdown happened frequently.

Oh, and picking the present was LOTS of fun! We have a family budget for friend's birthday gifts. It's the same for every friend and for every kid. It's always the same, BUT if one of the children wants to spend more than that then they are welcome to spend their own money. I think Deborah might have spent her entire piggy bank, if she had found a present that required it.

It was so fun to watch her pick the presents. It was fun to see the process. She has such a mind of her own. (I have no idea how I have so many children with such independent strong spirits. haha!)

Anyway ... then we went to the party. It was so fun! Then they played a game. It was a game kind of like tag, but they would thrown this "cushion" and if the cushion hit you then you were out. I wanted to play! It looked like a lot of fun! Deborah was running fast and staying far from the cushion, never taking her eye off the cushion.

Then I saw it ... fear. She wasn't just playing a game. She was scared of the cushion hitting her. She was running to protect herself! (Oh, if only you could see her face in this picture. )

Thankfully, Liam (H-y's older brother who was helping with the party & is also a such a gentleman) tagged her by getting her out on the leg. Yay, Liam! As soon as she was out, I went over to check on her. She was so relieved to be out of the game.

That was it for her on the games, but boy! She had SO much fun, and she LOVED being at H-y's party!

The Weather Report

2011-11-12T11:07:00.001-06:00

Today is going to be busy day following a crazy busy week of appointments. I don't really have time to post, but I feel strongly that I want to share a few thoughts that have been brewing in my head.

A new friend I met recently, Susan, related feelings to a weather report. The other day I was driving and thought, "It's cloudy with a chance of heavy rain showers." I probably should have just acknowledged that it was already raining, but for whatever reason, I seem to have a probably admitting that the rain clouds are almost always looming lately.

Then I heard the words to the song I had on in the car:

And with everlasting mercy will I succor thee
And with healing will I take thee 'neath my wings
Though the mountains shall depart
And the hills shall be removed
And the valleys shall be lost beneath the sea
Know my child
My kindness shall not depart from thee!

And, then the thought came to mind ... the promise ... the rainbow.

The rain will always end.

Ryan's Hearing Tests

2011-11-10T23:39:00.000-06:00

On October 28th, Ryan had his 2nd set of tubes put in his ears. While still in the OR, they also did an ABR hearing test. You might remember that Ryan had this same test done last August and that it showed 60-70% hearing loss then. Well, this year the ABR showed his hearing loss to be 80-90%.

In light of the other skill losses, I suppose we anticipated these results. It was still disappointing to learn that he has had such significant loss.

So today we met with an Audiologist and she made molds of Ryan's ears for hearing aides. Within the next couple of weeks, we'll go back to the Audiologist's office to do a hearing test for an audiological exam. I'm quite curious how they will do that with Ryan.

I thought you might enjoy seeing pictures of the molding process. Dr. Board first put a little spongy material on a string. She placed that into the opening of Ryan's ear. Then she filled a syringe with some squishy green material. I wish you could feel the texture of the material. It was a seafoam green and was very oily feeling. Dr. Board put some in Ryan's hand before she put it in Ryan's ear. She even let me play with some too.

After just a moment or two it became set, and the doctor took it out. Ryan didn't seem to mind the process at all. This is what they looked like:

(We did have to repeat the first one, which is why you see 3 below. Don't worry; Ryan doesn't have 3 ears.)

You've heard the old saying: "Pick your battles."

2011-11-07T00:27:00.003-06:00

My little Deborah loves to pick out what she's going to wear each day. I've learned not to pick that battle. So, each day I give her choices. A few choices. We usually do okay that way.

Today she picked a BEAUTIFUL red dress. One of the most beautiful in her closet. She even wanted me to blow dry her hair and curl it for her today. She really wanted me to put some makeup on her too, but I had to draw the line at that one. She is a little young for makeup.

I suspect she knew I wasn't going to do makeup. So far, so good right? Then I asked her to go get her socks and shoes on. She picked her beautiful fancy white socks with the beautiful white lace. Of course, she INSISTS on wearing them as knee highs, which means the lace is up by the knees instead of folding them over. But, pick your battles right?

Then she comes back in my room to tell me she's ready to go to church. I turned around to tell her thanks and to give her a kiss. Imagine my surprise when I looked down at my beautiful daughter with her beautiful curled hair in her beautiful dress and in beautiful (knee-high) socks AND HER CONVERSE SHOES!

Yup! You read that right. Black & white Converse shoes. The ones that match her brothers. She thought they looked perfect. There was no changing her mind.

"Pick your battles." Right?

Notice her socks' ruffles are at her ankles. I picked my battle and she wore her Converse today.

(And, she still looked absolutely beautiful!)

Looking gorgeous

2011-11-04T23:24:00.000-05:00

It's rare to get a picture of Jessica. It's nice to get one of her smiling, looking confident, and just beautiful. I love that girl!

2011-11-02T23:29:00.000-05:00

I took this picture of Ryan today when he was on his way out to the bus. He just looked so cute. Something about the fact that he would NOT open his eyes just made me smile. He likes to sleep right up till the time he hears his friends. Of course, I think a lot of school kids would say he's got the right idea and would be jealous that he can get by with it. :)

A new picture by Jessica

2011-10-20T01:02:00.000-05:00

Another Hospital Visit

2011-10-17T21:53:00.001-05:00

Ryan had another trip to the ER today. This time by Ambulance from the school. We stayed there for most of the day and thankfully were able to return home tonight. He's doing fine. His O2 & pulse rates dropped while at school. We don't really know what happened but after an hour of being on O2 and several seizures later, he picked them back up. Hopefully, it'll be a peaceful night. I'm thankful for a great staff at the school, an amazing nurse, a wonderful EMS team, great Drs, and my wonderful family & friends ... and of course one tough little Mann.

Long Night

2011-10-12T08:00:00.001-05:00

Ryan had therapy at 9 am yesterday, which required waking him early. Unfortunately that seemed to set off seizures. In the past 24 hours, Ryan has had approximately 29 seizures, including some where he stopped breathing for 3-5 seconds. Obviously, I'm waiting to hear back from the Neurologist now.

Today is also the two week marker for the blood work that our Metabolic Geneticist ordered. I don't know if the test results will be back yet, but I'll certainly call later today to find out. His office is always great about calling me as soon as they get results, but I think I'll still call this afternoon just in case they're busy.

I also need to schedule a swallow study for him since he's no longer eating by mouth and schedule an appointment with a audiologist for testing since he has almost entirely stopped using his voice. We want to make sure there isn't a medical reason for either of those issues before we start looking for therapeutic ways to fix them.

And, somewhere in the mix of everything today, we have a lot to get done in school, so I better get off the computer and get the kids moving for the day. :) I hope you all have a great day!

Natural Bridge Caverns with Aunt Joyce

2011-10-07T20:43:00.000-05:00

Today we went with Aunt Joyce to the Natural Bridge Caverns in Texas. It was a lot of fun. Ryan and I were unable to go in the Caverns, but we hung out and just enjoyed the beautiful Texas weather. It was a gorgeous day!

One of my favorite places in Texas is actually right next to the Caverns. It's the Natural Bridge Wildlife Ranch. I love it! We didn't get to go to the Wildlife Ranch this time, but if you're ever in this area you should check it out.

Dentist Visit

2011-10-06T19:11:00.000-05:00

If you've followed us for awhile, you probably already know that we LOVE our dentists and their staff at The Dentists for Kids! Today was another great visit.

When we were on our way over to the office the kids were talking about how much they were looking forward to their visit. Deborah was listening to the boys talk about it, and then said, "Well, we all know I'm the favorite!" Geesh, that girl!

Ryan's Switch & Button

2011-10-01T19:20:00.000-05:00

Okay, so these aren't the best pictures but I thought you might enjoy seeing what Ryan's "switch" and his "Yes" button looks like.

The blue thing laying on the towel across his tummy is his finger switch. With just a tiny bit of movement from his hand, he can trigger a response.

In the top picture it is hooked up to the big yellow button. The yellow button is then programmed to say "Yes." It can be recorded to say anything. (When Daddy was traveling a lot to Boston, Daddy left a message on it to say, "I love you, Ryan.") We usually place the finger switch on one side and the button on the other side. This gives him the option of using either the finger switch or the button.

Since Ryan lost most of his words and his ability to sign, it's been really helpful to have the switch as a form of communication. He still enjoys having the ability to make choices.

I'm thankful for modern technology and the people who invent nifty little devices like this. I'm thankful for people who realize that even kids like Ryan want to communicate and need ways to tell the rest of the world all that is going on inside of their brains.

2011-09-28T16:14:00.000-05:00

I took Ryan to have his blood work done yesterday. I'm not sure who I felt the most sorry for: Ryan or the two people who were trying to get the blood. It took 4 sticks, and a lot of digging. Not fun. Ryan was quite brave about it.

Thankfully, they were finally able to get all of the blood they needed for the tests. The results should be back in about 2-3 weeks.

On a brighter note, the school introduced Ryan and us to a "switch" that just requires a very light touch. If he barely touches it, it activates a button device that then says "Yes." Thus, Ryan can make choices.

Last night we got home around 5:30 and I was sure that Ryan was tired. I was tired and he had been poked 4 times. He must have been tired. So he was lieing in his bed and I had hooked him up to his feeding pump. Unfortunately, the feeding pump would NOT work. I went through all the standard troubleshooting that normally makes it work, but nothing would make it work. Eventually, I had to call the technician.

While we were waiting for him to arrive, I put Ryan's switch next to him and said, "Do you want to snuggle with Mommy?" He didn't respond. "Do you want to get up?" No response. "Do you want to watch Sesame Street?" He said "Yes" with the switch. I thought, "Oh that must have been a delayed response."

So, I started over. "Do you want to snuggle with Mommy?" No response. So, I repositioned his hand on the switch and showed him where the switch was at and also the big button. I said, "Ryan, you can use the switch to say Yes or you can push the button." And, then I asked again, "Do you want to snuggle with Mommy?" Still no response. I again showed him where the switch was at. Wow, he must be really tired, I thought. "Do you want to get up?" No response. "Do you want to watch Sesame Street?" He quickly said, "Yes" with the switch and then hit the button about 5 times. "Yes, Yes, Yes, Yes, Yes."

Could it have been any more clear? So, he watched Sesame Street. I guess I wanted to snuggle, and he wanted to watch Sesame Street. Hmmm....

My Cancer Update

2011-09-24T10:00:00.000-05:00

It's MD Anderson time. I've been in Houston for the past several days and things have gone well. I love the talented folks here at MDA. I love the fact that every worker is so friendly and nice. They all seem to like their jobs. I especially love that they always get me on the first stick. Whew!

All the tests went well and the results are good. I'm still in remission. Whewhoo!

I was hoping to be moved to an annual checkup schedule, but unfortunately that was a definite no. I have a few new spots that will need to be followed, but nothing major. Just tiny spots. I'll need to stay on the 6-month schedule. But, at least I'm still in remission. :)

Clay in His Hands

2011-09-21T10:40:00.000-05:00

Jenny Jordan Frogley wrote a beautiful song, "Clay in His Hands", which was inspired by an article in the New Era magazine in December of 1999. The article was titled, "In the Potter's Hands" and was written by Larry A. Hiller. I was listening to this beautiful song performed by Jessie Clark.

I won't quote you all the words, but the chorus says:

We are clay in His hands
Centered on the wheel
As the wheel spins the potter molds
Creating something beautiful.

Can you picture it? A master artist sitting at His wheel spinning a beautiful work of art? I remember once watching someone create a beautiful vase. They started with a brick of clay. After wetting it some, they formed a ball and sat it on the center of their wheel. In what seemed like no time, and with seemingly no effort, with just the use of their hands, they shaped a beautiful curvaceous vase.

It's really a beautiful analogy isn't it?

Well, on this particular day, in my mind, I felt that as I watched the Master spinning my particular vase the walls had become so weak that the vase was crumbling. In my mind's eye I could really see the vase folding in on itself and finally the Master just putting the clay back into the shape of a ball and saying, "Let's start over."

Do you think that's how it works? At first I thought, what an awful image to have during such a beautiful song. A song that is meant to inspire and I was having an image like that? But, isn't that what the Atonement really is ... the starting over?

I was feeling weak from months of struggling, a tough doctor's appointment with Ryan, feelings of being overwhelmed with every day tasks, and the dread of the upcoming tests at MD Anderson.

I think too often we think of the Atonement as something we use when we do something wrong. But, it's also something to be used on a daily basis to strengthen us, to succor us, to help us to be better than we could be on our own. After all, He experienced all things so that He would know how to succor us in our time of need. Why not let Him help us?

This morning I was thrilled to find this beautiful video on YouTube to share with you so that you can enjoy the beauty of the words of the song and the creator of the video did a beautiful job on the images as well. I hope you'll take a few minutes to watch the video and enjoy it's message.

Medical Update on Ryan

2011-09-20T22:50:00.000-05:00

Today Ryan and I went to see his Genetic Metabolic Specialist in Austin. I really appreciate this doctor. He's amazing. He's like a walking computer database, and he gives lots and lots of information, which I love.

We were there for a special visit, not just a follow up. At the end of June, Ryan started having seizures that lasted longer than 30 seconds and where he quit breathing for 6-12 seconds every time. He was having a couple of these each day. One particular seizure seemed to last from start to finish for probably about 2 hours. Since that time, he has lost a lot of his skills. He no longer can hold his head up. He can't prop sit. He has lost most of his signs ... probably due to the lack of mobility in his arms. He has also lost his words: no, mom, and up. Additionally, he was eating 4-5 jars of stage 2 baby food by mouth during the day and only being fed by his g-tube at night. Now, he won't eat anything by mouth. If we get 3-4 bites in during each meal, it is because we have coaxed each of those bites. He might drink a half ounce of a bottle, but he struggles with it. At first, we thought the loss of skills might come back, but it's been almost 3 months and he's not regaining his skills.

Before his progress was definitely slow, but he was always making progress. This change, the sudden increase in seizures followed by the loss of skills, means that a lot of the diseases we had taken off the list of possibilities are now back on the table. None of them are great options. We'll be doing testing for several direct diseases. The orders are:

VLCFA, Lysosomals esp Krabbe re regression; TTP. PPT enzyme testing for Neuronal ceroid lipofuscinosistypes 1,2; DNA for Niemann-Pick C (type 1). Plasma and urine Cr/GAA.

Unfortunately, the lab was closed by the time they were able to get insurance authorization for all of those. So, we'll get the work done on Monday and it will take 2-3 weeks to get the results back. (Some of the tests have to be sent to different labs across the country.) If all of the tests come back negative, then we will need to do an MRI to look at the mylethin sheathing and also do a muscle biopsy to consider mitochondrial disease.

He also recommended a repeat swallow study just to make sure Ryan's current refusal of food by mouth isn't for a medical reason.

So, we'll see what the tests say. I haven't even researched any of the diseases. It was enough that the doctor said "I'm sorry. None of them are good options." I guess I just don't have the energy right now to feel anxious about the possibilities. Thus, I'll just pray and then wait until we have an actual answer.

Perhaps you'll pray too?

More art by Ryan

2011-09-17T23:07:00.000-05:00

Ryan finger painted the hair on this self portrait. They do the funnest projects at preschool!

Preschool

2011-09-12T23:02:00.000-05:00

As you may already know, Ryan started attending preschool this year. One afternoon, he came home with the assignment to color a picture of himself. Hmmm... how is he supposed to do that?? But, I put the tray on his wheelchair, put his glasses on him, put the sheet with the person outline on it in front of him, and gave him a green marker. Much to my surprise, he held on tight to the green marker, put his head down next to his arm and very intentionally colored. I was very surprised at how long he held on to the green marker and how much he colored the picture.

Later that night, I couldn't wait to show Dwight Ryan's coloring skills. I'm not sure I would have ever thought to have tried coloring with Ryan. It's made me realize there are a lot of things I ought to try. So, below is the picture he created with a little help from Daddy. Ryan did one of the eyebrows and so Daddy helped him with the rest of the face. Well, you can probably figure out which lines were done by Daddy and which ones were done by Ryan.

Pretty cool, right?

LOL

2011-09-03T23:10:00.000-05:00

David had the opportunity to perform again at LOL Comedy Club here in San Antonio. We know there are many of you who couldn't be there who said you'd like to see it. So, here you go ... Enjoy!

Lessons...

2011-08-23T06:32:00.002-05:00

It's that time of year again when students here are returning to school. Although I home school most of the children, we too are having the same experience. This year we are off to a little bit of a bumpy start. Jessica had her first day at high school. Ryan also had his first day at school. Thankfully, both of them seemed to have had a smooth first day at school.

However, for those staying at home, most of the other children's curriculum has not even arrived yet. No, I was not late in ordering it. I'm not sure why the schools were late in sending it. This year we are mostly doing online academies for all of the children, except Deborah. Johnathon's stuff did finally arrive yesterday, but it was not everything we were expecting. In an attempt to at least finish a little bit of school, we were up till 11 pm do 3rd grade assignments. Yikes. I hope he's not too tired today cause we have A LOT of work to get done.

We have also started seminary. I love that Jessica is so willing to be up early in the morning to attend seminary. I'm so thankful that she has such a good attitude about it! This morning while she was at seminary, I was reading in the scriptures about the concern that one man had for the people of the church. The people at the time had enjoyed such great peace that they had become very wealthy ... and unfortunately, very proud. The scriptures talk about the results of this pride. It wasn't a good thing. Although there were some who continued to do righteously and were not prideful, it was a great concern to Alma and he "began to be very sorrowful..." But, here's the part that I really LOVE ... "nevertheless the Spirit of the Lord did not fail him."

Isn't that a great thought?

Yikes!

2011-08-17T20:36:00.000-05:00

This was in our garage today:

Did you gasp? If not, maybe I should have enlarged the picture so you could see the detail and get a real feel for just how big the spider was ... or at least how big the spider is in my head. ;)

I'm not a fan of spiders, or any creepy crawly critters that belong outside of my personal space. I don't mind them living outside away from me. I just don't want them in my personal space, which if possible includes my yard when I'm out in the yard.

So, you might be wondering what happened to this spider. Thankfully, I have a brave son who was willing to take care of it for me. (I don't even like to feel the squishing of the spider, and I'm confident this one had a lot to squish.) David came out to the garage. At first David and Johnathon suggest I just run over it with the van. But I was concerned that the vibrations of the van movement would cause it to run away.

Then David came up with the brilliant idea of using the shovel. At first I thought he was going to do the kind, gentle thing of just moving the spider outside. It wasn't necessarily the option I wanted, but I didn't want to be a bad Mom. (Would it make me a bad Mom to insist that my child crush the spider?) And, before I could give it a second thought, WACK! He slayed the spider! WACK! WACK! By the time, David finished, there wasn't even much left to identify that there had once been a spider.

I hope no search and rescue spider teams come looking for their old friend. One was enough.

My Sister Rocks

2011-08-12T20:23:00.000-05:00

This amazing box arrived in the mail to me today. It was filled with candies from the 80's and since it had been sitting on a hot truck the box smelled like warm sugar before we even opened it. It was delicious!

The kids and I had so much fun going through all the various candies! When I was a young kid, I would have eaten all this candy in a day or two. Can you imagine that?? I was truly a candyaholic. So, this was the perfect gift for me from my sister & her husband and my amazing nephews. Thank you all! We'll have lots of fun sharing it over the coming weeks!

Life Lessons

2011-07-18T08:15:00.000-05:00

When I was in my late teens, I was confident I had all the answers. I knew exactly how I would handle every situation. And, I knew it would be the right way to handle everything.

Perhaps that’s why a summer day in Indiana is so vividly burned into my memory. I was wearing a white leather skirt with a red camp shirt. Do you remember those shirts? That was a very stylish outfit then. My sister and I were sitting in my blue Nissan in front of the mortuary where she and her husband lived. Talking. I had been quite upset with her. I thought she had made some bad decisions.

She was pregnant for the 3rd time and I thought it was the most foolish decision ever. I couldn’t understand why she would put her body through that. She had horrible pregnancies. And, more truthfully, I couldn’t understand why she would put our family through it. Afterall, everything came to a halt for the entire pregnancy. Someone else had to care for her 2 other children, clean her house, cook for her, and the scariest part of all … the doctors had told her that she might not survive another pregnancy.

I had already lost one sister. I didn’t want to lose another sister. This seemed to me to be the most selfish decision she could possibly make. I knew she loved the attention of being pregnant. The whole world stopped for her when she was pregnant … and she loved those little babies. I didn’t understand that at all. But really?? How could she risk her life for all this? It was so selfish!!

Then as we sat in the car, she explained to me the feelings that she had received through prayer. The feelings that there was still one more child for their family. I don’t remember what specifically she said to me that day, but I will never forget what she taught me. I will never forget learning about a mother’s love. I will never forget learning how much mother’s are willing to sacrifice for their children. I will never forget learning that she was willing to sacrifice her life, not because she was selfish, but because she loved a child she hadn’t even met yet.

I learned that day that only a mother can know some things. I learned that faith can help us do things that sometimes do not even make sense medically. And, I started to learn that perhaps I didn’t have all the answers.

A few years later, I learned a similar story from my father. I was a little older, but still seemed to think that I had all the answers for the particular situation our family was handling. I was frustrated by the pain my parents were feeling and wanted desperately to spare them. I was sure if they would just follow my counsel that it would stop.

On a particular day, I told my dad how I thought he should handle a particular situation. If you know my dad, you know that he typically speaks in a pretty slow, I’d say slightly southern drawl, and has a real talent for making things seem like suggestions. Never forcing his thoughts or opinions on you. I on the other hand can state things quite strongly. I’ve mellowed over the years, but am still working on developing his talent.

After telling him exactly how to fix the problem, I don’t remember his exact words, but again I’ll never forget the lesson. He simply taught me something like this: He said something to the effect of, “You know, Tina, when I die the only two people I’m going to have to report to are my mother and my Savior.” (That statement tells you a lot about how he felt about his mother. She was an amazing lady!) “I have to do what I feel like I can say to them I did everything I could.”

Many times over the years, I have thought about that lesson. I base a lot of decisions on that. Can I stand in front of my Savior and say, “I did my best.” Or “I did all that I could do.” Or, “I did all that you asked me to do.”

I know that if I live my life by that standard, I will be able to return and report feeling good about the work I have done during this earth life. I will have done all that I could do.

What lessons have you learned in your life that have blessed your life?

Flight of the Bumble Bee

2011-07-15T23:43:00.004-05:00

Are you ready for David's latest stand-up routine? This one's short, but it's fun! He was invited to perform at Stone Oak Youth Theater's first annual Schwa Awards.

All new material. I sure enjoyed it! Hope you enjoy it, too!

Plant Experiment

2011-07-15T09:55:00.003-05:00

Introducing Zeus Winnebago ...

Jacob decided to "plant" a sweet potato in one of my favorite glass measuring bowls and I thought you all would love to see how it's growing. This is after just less than 3 weeks of growth. It does have really pretty leaves. Doesn't it?

Haircuts

2011-07-09T16:08:00.000-05:00

I took the Johnathon and David to get their hairs cut today. Very overdue. Especially for David.

He was enjoying his hair being longer. Me, not so much. But, he didn't give me too much grief about going to get his cut. (Thank you, David.)

Mama Bear came out while we were there.

Have I ever mentioned that I am a HUGE Mama Bear? I do not like people being rude to my children, especially when my children are being very polite.

So, we went to the barber shop that we have been taking the boys to for the past 7 years. There's a fairly new guy who obviously doesn't like kids. He's rather unkind to the kids, even when they aren't in his chair. As we arrived, our favorite guy was already doing another man's hair and had another man waiting for him. So this man told Johnathon to get in his chair. I hesitated, but the man insisted. Hmmm... this should be interesting I thought.

Since he volunteered to do it, I thought perhaps the man would be on his best behavior. But he wasn't. I eventually had to step in and remind him that someone else could finish the job if needed.

He seemed surprised by my assertiveness. I wasn't mean or rude. I simply reminded him that there was no need for him to be so unkind to my son. He had volunteered to do the job. We were perfectly willing to wait for someone else. He was quiet as he finished the rest of the hair cut. Quiet is fine. The hair cut looked nice.

He left immediately after finishing Johnathon's hair cut and told the other man not to charge us for it. I still paid. I was not looking for a free hair cut. I just wanted Johnathon to be treated respectfully. He deserves that. We all do.

By the way, the pictures were by Deborah. :) Oh, and if you're wondering ... yes, we will go back to this barber shop. Why? Because, there are still other people who work there that do a great job. And, who knows, maybe this man too will be kinder next time. We'll see.

2011-07-05T22:58:00.002-05:00

Today I took Deborah and Johnathon to the pool to swim. Deborah is 4 years old. She normally asks me to put her "swimmies" on as soon as we get there. They are water wings or floaties, whatever you might call them, they help her to stay afloat since she hasn't learned to swim.

Last summer she had started putting her face under water but this summer she has been very reluctant to get her face wet at all.

Today as soon as she arrived she immediately got into the pool, pool sandals and all. (When I bought her last pair of sandals I called them "pool sandals" meaning that they'd be good to wear to the pool. She has decided that means they'd be good to wear in the pool.) No floaties. No swimmies. No floation devices.

Since I'd love to have her work on swimming skills, I simply reminded her that she should blow bubbles if she goes under water. Within just a few minutes, she was walking under the water and blowing bubbles.

It was fun to see her confidence soaring so high today. I can't wait to see what she does tomorrow!

One of those days.

2011-06-30T19:50:00.002-05:00

Today has been one of those days. One of those days that I wish I could rewind and redo. Redo and have it be different.

It started last night with a visit to the ER with Deborah. Her big toe was dark red and swollen. Apparently her nail became infected, probably from her picking at her nails. She had to have it numbed, lanced, soaked, and scrubbed. As you can imagine, she was not very appreciative of any of it. I was thankful that Dwight was home to take her to the ER. It's usually me that takes kids to the doctors and to the ER's. Dwight reported that she yelled angrily and loudly at the doctors and the nurses. After some oral antibiotics, they sent her home this morning around 2 am. It looked a little better this morning at 8.

But by 10, the redness had started spreading up her leg. So we headed back to the dr where she received 2 more shots. (More yelling, kicking and screaming.)

That was the best part of my day though. It went downhill form there. And, tonight I called my Dad. I can always count on my Dad to lift my spirits. Unfortunately though he was sitting in a hospital room with my Uncle. One of my favorite Uncles. Well, all of my Uncles are my favorites. :)

He was with Uncle Edward. (Pronounced Uncle Ederd.) I was hoping that Uncle Edward would hold on till I could visit him next month. It doesn't sound like that's going to happen. I know he's anxious to go home to Heavenly Father and to see his family in Heaven. I will miss him. I love him very much.

Today has been a hard day. I wish I knew that everything is going to be okay.

Tenderness

2011-06-25T00:01:00.002-05:00

This morning I was rushing through Target to get a few groceries before heading out for the day. David and I were rushing through the store gathering a few necessities and a few fun things.

As we rounded the corner to head for the check out points, I was completely caught off guard when I saw the most tender moment right there. I almost stopped in my tracks to watch it. I might have just stood there, if it hadn't been for David prodding me to move on.

There was a husband and wife shopping for lotion. Nothing too unusual about that, but in his hands were a pile of various hats and scarfs. At the edges of her current scalp were the obvious signs of hair loss that had already started. She was moving slowly and frailly, and with each small step her husband seemed to almost leap to catch her.

As I was checking out, I had the honor to talk with them for a few minutes. They are bravely facing a battle of breast cancer. My stomach dropped when she said she was going to the hospital today to get her 3rd Neulasta shot. Oh, how I hated those shots. Yet, they spoke courageously and looked forward with hope to their conquest in November.

A wave of emotions washed over me as they walked away today. I couldn't even speak to the cashier. I could barely hold back the tears enough to finish the transaction. November just seems so far away. I'm so thankful to be on the other side of that battle.

And, I'm so thankful that they have each other. It really was tender moment to see this morning. I felt honored to witness it.

Quote for Today

2011-06-15T23:54:00.005-05:00

"Complete understanding is not required;
however, waiting on the Lord
and
exercising faith in Him
are absolutely necessary."

~ Kristen Warner Belcher, Hard Times and Holy Places

Hard Times and Holy Places

2011-06-15T08:31:00.002-05:00

I'm reading a book by Kristin Warner Belcher called "Hard Times and Holy Places." I suppose the title of the book, and maybe the title of my post, might make you wonder if I'm searching for answers. I am having some hard times. Aren't we all?

Nothing new. Just dealing with old demons. What are old demons? If there were a Tina Dictionary, the definition of old demons would read: challenges, struggles, or trials previously thought to have been conquered, mastered, or demolished that have resurfaced.

My Mom gave me this book while I was dealing with Cancer. I just finished reading several other books that I've been working on for a while and after listening to Kris Belcher speak at Time Out for Women in San Antonio I was really anxious to start this book.

I normally underline all the great stuff in a book and later write a short report on the book. (I poached the book report idea from my brilliant friend, Ali.) But, in writing my report on "A Disciple's Life" I discovered that I lost some of my initial reactions. So guess what ... I think I'll blog about the books more as I read them.

So, today as I was reading ...

The Chapter is titled, "Choosing Christ." Kris talks about turning to Christ during trials and how it makes a big difference in whether the trials are just really hard times or whether they are holy times. I found that to be really true during my battle with Cancer. I think that is also much of what I struggle with in the mundane of life.

It is so much easier to keep focused on Christ during really, really tough times. Maybe I'm the only one who finds that to be true. I don't think so, but maybe. I'm working on it though. I'm working on being more faithful at all times because I know it makes a difference at all times.

During the Cancer days it was so easy to stay focused on the things of eternity. They were really the only things that mattered at the time. Not only did other things not really matter, I could not physically tend to much else. I didn't have the energy to worry about whether or not my toilet was cleaned. I didn't have the energy to worry about whether or not piles of paper that needed to be filed were 10 inches high or 10 feet high. I knew that I had to stick to the list of priorities: strengthening myself spiritually, my family, service.

So, why is it that when struggling with the mundane tasks of daily life ... the non-Cancer life ... why do I try to do it another way?

Kris also shares a scripture 2 Nephi 32:9: "But behold, I say unto you that ye must pray always, and not faint; that ye must not perform any thing unto the Lord save in the first place ye shall pray unto the Father in the name of Christ, that he will consecrate thy performance unto thee, that thy performance may be for the welfare of thy soul."

I have recently had some very neat experiences with consecrating my performances to the Lord. They are very special to me. I can tell you it works. It really works! I have applied this idea to serving in various ways. I had not thought of applying it to trials and old demons. It seems so obvious, doesn't it? Thanks, Kris, for pointing that out in your gentle way.

I can't wait to experiment on His word. I know from past experiences with my Heavenly Father and with the Savior that they always keep Their word, and that prayer always seems to be the best place to start.

I hope that whatever hard times you are facing whether new or old, that you will find peace today.

A little good news

2011-06-14T01:07:00.004-05:00

I went to see the dermatologist today for the results of a recent minor biopsy. I had a persistent spot on my face ... in fact, it was the spot that got me into this whole mess. It has been diagnosed as a "precancerous spot" and nothing to worry about, but has been resistant to every type of treatment. Six weeks ago they did a quick biopsy, then froze it off, and I've been treating it twice a day with a topical ointment. The doctor was concerned that perhaps it was a T-cell cancer. Apparently, it is not uncommon for my type of cancer (which is a B-cell cancer) to coexist or to morph into a T-cell cancer. But the good news is today I found out that it is just simply nothing to worry about.

Isn't that wonderful news?!

2011-06-13T00:33:00.002-05:00

They said it was a matter of "when" not "if" Ryan's Mic-Key button would come out. Well, tonight was the when. I got it back in at least as far as I can tell it seems to be in the right place. His tube feeding seems to be going okay. So, I'm assuming it's in the right position.

I guess I can mark that off my list of things I fear doing...

Something to think about...

2011-06-01T23:32:00.003-05:00

"We should live the gospel most fully among family and friends because they are the "clinical material" God gave us for practicing our Christianity." ("A Disciple's Life: The Biography of Neal A. Maxwell" by Bruce C. Hafen.)

Isn't that a great concept?

2011-05-20T08:54:00.003-05:00

Lately I have been feeling very overwhelmed and exhausted. My load hasn't really changed. I'm not getting any more or less rest. So, why?

Today I was reading and pondering and I think I found my answer: It's Martha-like anxiety.

You probably remember the story in Luke 10:40-43.

Perhaps my mother should have named me Martha. I am a born Martha. I'm good at being Martha. I love tasks. I love lists. I love working. I love accomplishing things.

But...

Even more ...

I love the peace that comes when I sit with the scriptures and I read. I love the peace that comes when I attend to spiritual things. I love the peace that I feel when I ponder on spiritual things. I love the peace that comes when I pray ... I mean really pray ... not just quick, short on my way out the door prayers. I love the peace that I feel when I feast on the teachings of the Savior.

I want to be a Mary.

Ups and Downs of Life

2011-05-16T22:27:00.003-05:00

Up: Ryan has been making lots of new sounds during the past few days. It's fun to hear him experimenting with so many different noises. It makes my heart feel glad!

Down: Today I received the bill for all the tests that were done at MD Anderson during the last round of Cancer check ups. Two grand. Ugh. Can I just skip the next round of testing?

Prepared from my Youth

2011-04-28T19:54:00.000-05:00

Today when I came home, Ryan was upset that I had been gone for what he apparently thought was too long. I had my hands full and also needed to wash my hands as I had been at the store picking up prescriptions. He expressed his frustrations as he waited very impatiently for me. He wanted my undivided attention.

As quickly as I could, I scooped him up into my arms and gave him kisses and told him of my love for him. As I watched his mannerisms, he reminded me of my Uncle Jr. I don't think I've ever told you about Uncle Jr, which is surprising cause he's one of my all-time favorite people.

It's difficult to speak of Uncle Jr without saying "Aunt Kate-Kate and Uncle Jr." I never can remember exactly how they are related to me, but what I do know is that "uncle" is not really the proper title. It's a title that in my mind fits because I love him so much.

As a little girl I was also very confused as to the relationship between Aunt Kate Kate and Uncle Jr. After all, if she was Aunt and he was Uncle, it would make sense that they were married, right? Wrong. They weren't married. I knew that. But, he was a grown man. So in my mind it really didn't make sense to me that he was her son. I think I was in my teens before I started to understand that Uncle Jr was Aunt Kate Kate's son.

He was just my Uncle Jr. I don't remember seeing a crippled man. I don't remember thinking of him as someone with a disability. I just remember always being really excited to see him. I loved the way he said Teeeennnnna, and I especially loved the way he crushed me when he hugged me. It was wonderful! I couldn't always understand him, but I knew from the sparkle in his eyes that he was excited to see me and that he was excited to tell me something. And, I was equally excited to hear what he had to say.

Perhaps when Jr was Ryan's age, he might have been healthy. I don't know. At some point, he had Polio and it took his health and it changed him. It changed him into the man that I knew and loved.

Before today, I recognized events and people that the Lord has placed in my life during the past few years to prepare me for Ryan joining our family. As I thought about Uncle Jr today, I felt that perhaps the preparations had started long before now, perhaps even while I was in my youth.

I was so blessed to know Uncle Jr. I will never forget his hugs, or the way his eyes would sparkle when he'd see me. Most of all I will never forget the way he'd say my name. No one else will ever say my name quite the same again.

Tonight's Conversation with Deborah...

2011-04-15T21:35:00.002-05:00

This was the conversation that followed me noticing a little black bead in Deborah's mouth as I was tucking her into bed for the night:

Me: Please don't put things like that in your mouth.
Deborah: Why?
Me: Because you could choke on them.
Deborah: Could I choke on chicken?
Me: {{{ pause }}} Yes, dear, I suppose you could choke on chicken also.
Deborah: Ha, ha. That's funny!

What I wish I had said...

2011-04-12T22:07:00.002-05:00

Do you ever have those moments that you look back on and wish you had said something different? Maybe sometimes the words used conveyed the wrong meaning. Maybe sometimes the words weren't said at all. Or, have you ever "put your foot in your mouth?" Or just a missed opportunity.

Here's my story ...

A friend at the dentist office asked me if the reason I don't drink caffeinated drinks is for religious reasons. I said, "No, it's really a decision I made based on my health." While my answer is true, it's only partly true. What I wish I had said is:

I don't drink caffeinated sodas because after years of health issues, I started praying for help from God. I needed to feel better. I needed to have energy to raise my children. I was sleeping 4 hours a day in middle of the day, and if I didn't rest, I sounded drunk because I was too tired to form my words. One day, God told me as an answer to my prayers that if I would quit drinking caffeinated sodas I would find answers and have more energy. Because of past experiences with God, I believed that if I did what He asked me to do, He would do His part. And, He has. He always does.

2011-04-09T22:43:00.003-05:00

Tonight Ryan was sitting on the bed so big and strong with very little support. I tried to grab the camera and just as I was ready to snap the camera, he pushed back and laid down. Oh, really? I missed it.

So, I tried to sit him up again and he squawked at me. I finally convinced him to sit up for just one pick picture. "Please, Ryan, let Mommy take just one picture." So, he complied. So big and strong...
As soon as I took the picture I said, "Oh, I got it." And, since Ryan obviously felt he had fulfilled his obligation, he immediately pushed back and laid down.

Thank you, Ryan. I know it's a lot of work. I'm so proud of you for being so strong!

2011-04-05T23:39:00.002-05:00

Tonight I took Jacob to buy new shoes. He needed them. Desperately. His big toe was rubbing the ground. I'm thankful for a young man whose only concern was whether or not I could afford to buy him a new pair of shoes.

As we were driving home the HOT donuts light was on at Krispy Kreme. Of course, I did what any good mother of a growing teenage boy would do. I stopped immediately to go in to get our free hot donut. (Did you know that my favorite Krispy Kreme is actually the original glazed donut?)

While we were there the lady asked if we would like to donate $1 to the Komen foundation for Breast Cancer. I said I would donate a $1. Then Jacob asked if I would take a dollar out of his account to donate also. They gave us a sheet to write a message or our name. On Jacob's sheet, he simply wrote, "No more cancer."

I love that boy.

David's Stand Up Debut

2011-04-03T00:34:00.005-05:00

For those of you who couldn't join us at the LOL Comedy Club tonight, here's David...

Updates...

2011-03-28T00:03:00.002-05:00

I have several updates that I wrote while I was on the road that I haven't posted yet. I didn't realize that I hadn't sent them to the blog. I'll get that done this week. But, in case you haven't heard the great news...

the doctors at MD Anderson found no new spots of Cancer. The tiny spots on my neck are still there, but they haven't changed in size ... still just 3 spots that are about 2 millimeters each. Nothing of concern at all. So we are calling it a remission still. Yeah! The numerous biopsies they took of my GI system had raised some suspicions; however, it just appears that the Cancer was originally in my stomach.

What's good about that is that it appears the primary source of the Cancer would have been the stomach, which means I'm less likely to relapse soon. Therefore, I don't need to go back for check ups every 3 months as originally planned. The doctor said he'll see me in 6 months. YEAH! As long as I don't have any new lumps and as long as I don't become symptomatic again, then I just get to kick back and be "Cancer Free" for 6 months.

Also, on the good news front ...

We received test results back from Ryan's Metabolic Geneticist. Remember they were rechecking some of his tests ... zinc, thyroid, protein levels. Well, they all came back in normal ranges. This is good news; however, if I'm being honest, I have some mixed feelings about this news.

The mixed feelings just come from a place of wishing there were an easy fix for everything. I guess it would have been nice to have learned that he had a zinc deficiency and simply giving him x amount of zinc would resolve everything.

I definitely accept Ryan as he is and will always love him and cherish the blessings that come with his challenges. But, there is a part of me that longs for an "easy" fix.

I suspect any Mom would.

GI Testing Done

2011-03-09T19:48:00.003-06:00

I returned home today from MD Anderson. The trip went well. The hotel was absolutely beautiful. (Thanks for sharing your loyalty points, sweetheart!) And, the people were very kind as always.

The IV was a little cantankerous ... but just a little this time. The nurse thought she hit the vein on the first stick, but then after she started the IV drip the area was burning and stinging really badly. At first I just tried to deal with it, but I realized it needed to be pulled when I started to develop a large hard lump on my arm. The 2nd attempt was very smooth. Thankfully. No stinging. No burning. No weird lumps. Whew.

The Endoscopy center was running a few hours behind schedule. Several of my fellow patients were very grumpy. I can't blame them. It's not fun to be starving and dreading a test. I think that's why Dr. Miller seemed so surprised that I was still cheerful when he came into talk with me. But, Dr Miller, the nurses & I had fun prepping for the test.

Once they started the meds, I really don't remember much else, except someone saying something about a pressure bag and someone asking the nurse to give me more meds. The next thing I remember is when I met my escort nurse, Dayo. Since I had been sedated the hospital requires that an adult escort me home. Dayo escorted me back to the hotel. She was very kind and took good care of me.

The report paperwork shows 19 biopsies of the GI area. I didn't sleep very well last night. Weird dreams and just very restless. I left the hospital at 4.30 this morning. I thought I might just rest better at home. I'm surprised by how sore I am tonight. I feel like I have a lead weight in my gut, and my throat is incredibly sore. It feels a bit swollen ... not like a sore throat though. Just weird. I'm pretty sure this will all go away with a good night of sleep, and that is exactly what I'm planning to do now.

Thank you for all your love and support. I appreciate the notes, emails & calls. (And, no, my dear friend, I don't mind you asking me. I'd repeat it anytime for you.) And, as always, an extra special thanks for all your prayers!

PS I almost forgot to say ... results should be back by next Wednesday.

It's that time again...

2011-03-04T15:10:00.003-06:00

It's that time again for my 3-month follow up visit to check and see what the status of my cancer is. I've had the appointments scheduled for a while now, but I guess I've been in a bit of denial. I hadn't made all of the other arrangements until just recently.

I had planned on driving down with a friend on the morning of the tests and returning the same evening, but due to details those plans had to change. So yesterday morning I was busy finalizing some of the details of the plans. The reality of "every 3 months for TWO years" hit hard. I'll admit that I was a bit teary eyed by the end and was even feeling a wee bit sorry for myself.

If you've been reading my blog for long, you probably already know that I'm really not good at endurance events. I'm much better at the sprinting stuff, and yet I know that one of the lessons I'm to learn in "all this" is to endure well.

And, just like with all things ... for every trial there's a blessing, right? So ... where's the blessing?

Yesterday afternoon one of my very favorite people came over to visit. We were talking about my upcoming 3 month checkup and she shared with me some personal things and some personal views. And, I think I'll adopt them! Maybe you'll want to also.

Every 3 months for me ... maybe for you, it will be every year during your annual exam ... I will go for my cancer checkups expecting a clean bill health and feeling and expressing gratitude for the answers. I won't stress about it, or feel sad or overwhelmed about it. I'm just going to think of it as an opportunity to be thankful.

Aren't we blessed to live in this day?

It really is interesting how just that simple conversation with my friend was enough to turn my thoughts from feeling completely overwhelmed and burdened by every 3 months for TWO years to really thankful that the doctors are taking such good care of me. It was just the reminder that I needed. I am thankful that my friend took time out of her very busy day yesterday to stop by to visit, and I'm especially thankful that she lives the kind of life that makes her such a great example to me. I hope you all have a friend like her!

PS In case you're wondering I have tests next week and the following week. I should have all the tests results back by March 16th. I'll keep you all posted. I fully anticipate everything will be the same, but will you keep me in your prayers? I can always use the insurance. :)

2011-03-03T23:08:00.001-06:00

Please don't let me forget this moment.

2011-03-02T22:22:00.004-06:00

I don't even know if I can describe today. I almost hesitate to write about it for fear that it will lose something in the translation, but I don't ever want to forget today. So I'll do my best to share with you one of the coolest moments perhaps in my life. Definitely one of the coolest moments in my life with Ryan.

Today we had therapy with Dee Dee. You might remember that she is Ryan's Occupational Therapy. If you remember that, you might also know that we love Dee Dee. Of course, you probably also remember Nelda, Ryan's nurse, and I'm sure you know that I think Nelda has been a huge blessing.

Today Ryan was working on kneeling next to his little desk/table and pushing on a big vibrating button. He was sure in a good mood! Lots of smiles.

Then Dee Dee suggested some tummy time work. That's not always his favorite thing. It's hard work. But he cooperated with very little fussing. He quickly made it obvious that he wanted to work on crawling. So Dee Dee put him on his hands and knees. She helped him with his knees and I helped him with his hands.

This is where it gets really cool...

He crawled (4 or 5 moves) to me. When he made his way to me, I picked him up to give him big hugs. His legs were really stiff. He had worked his little muscles SO hard. I hugged him tight and put one hand under his shirt to rub his back. He leaned his head against my shoulder and with his hands grasped at my shirt as if to hug me back. We hugged for a moment like that with me support his weight, one hand under his bum and one hand on his back.

THEN he pushed his little head up and his body away from mine and looked right at my face. Right at my face. And he talked to me. Not with words like ours, but with Ryan words. He held his body and his head so strong like any toddler would.

I wish I had a word to describe what I saw and felt.

I think it must have lasted for a full minute. He had a lot to tell me. Perhaps he wanted me to know that he is going to crawl. He is determined. Perhaps he was reminding me to keep the faith. He sure is a strong boy. Whatever he was saying, he was saying with full purpose.

It was one of those moments that I hope is written on my heart, never to be forgotten.

2011-02-24T22:59:00.002-06:00

Well, so much for my Valentine's Day roses. She was trying to take off the dry leaves, and it apparently got a little out of hand. But Daddy really got his money's worth! I think she may have enjoyed the roses even more than me. She played with the rose petals for hours today.

Miracles

2011-02-20T22:17:00.002-06:00

Today's Sunday School lesson was on Miracles. We are really blessed to have a great Sunday School teacher. I always look forward with great anticipation to his lessons, especially when I have read the lesson. Today was one of those days.

The topic is one that is especially dear to me. I have been blessed with miracles in my life and I have witnessed miracles in the lives of others. The lesson for this week covered Mark 1 -2, 4:35-41; 5; Luke 7:11-17.

These verses are some of the best in all of the New Testament. So many miracles. My favorite was actually when he cast the Legions of unclean spirits form the untameable man in Mark 5. I love that story. I wonder how free that man must have felt when he came to his "right mind." And, in my mind, it just seems like such a loving thing for Jesus to do.

Which miracle is your favorite?

Have you seen miracles in your life?

Maybe I should define Miracle.

Miracle. An extraordinary event caused by divine or spiritual power.

This morning I had to drop off one of my son's at church early and so I had a few minutes alone ... a rare event on a Sunday morning for a Mom of 6 kids. As I was driving, I was thinking about the feelings I felt as I thought of the day I found out that the cancer was in remission. I know that modern medicine put me in remission, but to me I think modern medicine is a miracle.

There were so many little miracles around the cancer. In my alone moments this morning I thought about the way I felt the moments and days after the call that told me I was in remission. I also thought about the moments when I felt as though I was being carried by angels.

I hadn't thought about those times for a little while and I felt overwhelmed with gratitude again. Gratitude for the divine intervention in my life. Gratitude for the friends and family who helped along with way.

I also felt a lot of gratitude for parents and grandparents who taught me good things. Gratitude for the lasting impression of a father reading his scriptures early in the morning. Gratitude for the memory of my mother at a dining room table reading her scriptures. Gratitude for a sister who memorized scripture masteries. Gratitude for a husband who has knowledge than me.

And, today I feel an extra special gratitude for my friend and Sunday School teacher, who because he is always prepared to teach, motivates me to be prepared to come ready to learn. I always leave his class feeling strengthened in both knowledge and testimony. I love Bro Burton and his sweet wife, Helen, and am thankful for the opportunity I had to ponder this week about miracles.

Ryan

2011-02-17T23:51:00.002-06:00

Ryan did a great job!

Doesn't he look so strong!

Ryan's TV Debut

2011-02-16T22:16:00.002-06:00

Today's therapy session was recorded by a camera man for WOAI for SA Living. He'll be making his first TV debut tomorrow sometime between 10-11 am. It'll just be a brief appearance during a segment that will be covering the proposed cuts to Early Childhood Intervention (ECI) funding.

Hopefully, I'll be able to get a copy that I can post here for all of you that live outside our area. :)

Heart Wrenching

2011-01-25T16:52:00.000-06:00

Today has been an interesting day here at Disney World. We had planned to start our day early at Epcot and then at 12.15 we were to check in for the AquaSeas Tour. We had scheduled it this way because they had been predicted storms during the day.

Well at 12.15, we went to check in and found out that "due to technical difficulties" the tour had been canceled. They aren't sure if they will be doing it all this week, but will call if they are able to do it later. We were disappointed, but Jessica and David are really good at making the best of everything.

So we just continued hanging out at Epcot for the day. Sometime around 6 this evening, it started to rain, but by 7 pm it was pouring and I do mean pouring! My goofy children *loved* it! I stood in a red telly booth in the United Kingdom watching them play a Kim Possible Adventure.

I called home to say Hi. Dwight was holding Ryan on his lap and so Ryan could hear my voice on the phone. He started calling me, "Maaaa." Over and over again. Dwight put me on speaker phone and Ryan and I talked for a few minutes. I then realized that I probably needed to get the other 2 kids out of the lightning storm that had started. So, I told Ryan that I loved him and I would talk with him later. As Dwight was saying good bye to me, Ryan let out the most heart-wrenching, sad, sad cry that I have ever heard from him. It was horrible.

I sobbed for 20 minutes wondering if I had made a huge mistake. Had I been selfish in bringing the kids? Should I have sent Dwight with the kids? He's used to Dwight being gone? What if he thinks I'm not coming home?

I finally pulled myself back together and realized that it's totally normal for him to be sad that I'm gone. I'm thankful that he's aware of things and that he's able to communicate his feelings so well.

Lost.

2011-01-23T20:33:00.000-06:00

We drove around today for about 2 hours looking for the local Mormon church. The address that we had online didn't seem to take us anywhere. When we followed the GPS to the address, it took us to a parking lot that was a Liquor store. Hmm... definitely not LDS. haha...

We finally found another Mormon church building using my GPS, but the last service had started at 11 am and it was after 2 pm. Well, at least we tried. It was a beautiful day to drive around and to see things. It was fun to just visit with the kids too. We took some fun pictures today. I'll post them when we get home. We didn't bring a connector thing with us.

Tomorrow's our first day at Disney World. David and I have it planned out. It would make you spontaneous people really uncomfortable. We haven't really included Jessica in all of the planning. She's more of the spontaneous type. We'll just let her think it's happening spontaneously and she'll be happy. :) But David and I will be much more content with a plan. We've read books. Big books. Several books. Studied touring plans. Talked to people. We have ideas. It'll be interesting to see how the ideas match reality.

So tomorrow is Animal Kingdom. David wants to get an early start. So I'm going to bed early tonight so that I can get some rest. We walked A LOT last night. We covered all of Downtown Disney. We were all exhausted by the time we got back to the hotel, but we had a great time!

The Plane Ride

2011-01-22T16:21:00.000-06:00

Oh, I almost forgot to tell you about Lilly Belle, her sister, and her Mama.

I get that it can be rough to travel with little kids. I've done it a few times myself. So I thought I might offer a few suggestions.

1) Don't feed your child and yourself chocolate covered chocolate donuts and then expect your child to sit quietly for 3 hours. That's not fair.

2) If you say you're going to turn off the movie if they screech at super high pitched levels, then do it! Don't just keep lying to your child. Or, buy the rest of the plane ear plugs.

3) Wipe your child's nose on a tissue. My sweater, no matter how soft and furry it may look, is really NOT a tissue for your child's runny nose. The first time was cute. The 2nd & 3rd time ... well, it became gross. Please, take the offered tissues.

Obviously, my suggestions might not work for everyone. They are just my suggestions.... :) I'm sure glad it's just one flight... and it's a good thing that Lilly Belle had beautiful eyes ... and my sweater is washable.

We Made It!

2011-01-22T14:13:00.001-06:00

Well, we are finally in Orlando. Dwight dropped us off at the airport this morning nice and early, but not too early. Did I mention that Jessica is with us? It was a tough decision, but after the last 2 years and all of her help I decided she needed a break. I hope it was the right decision.

Anyway ...

We are staying at a beautiful Marriott resort near the parks in a sweet 2-bedroom suite. Since David is the star of this vacation, I gave him the choice of the rooms. He choose the master bedroom with its beautiful master bath and king size bed, huge flat screen tv and desk. He's loving it! I offered to share the 2nd bedroom with Jessica but she's opted to take the family room, which has a nice pull out bed. Since it has other chairs, I suspect it will just stay a bed all week. I think everyone loves that we all have our own rooms, tv, and privacy.

We have a full kitchen: full-size refrigerator, microwave, and oven. I know Dwight would cook if he were here. But we stocked the refrigerator and cabinets with ramen, Lean Cuisines, sandwich meats, soda, water, and some other good munchies. Who wants to cook while on vacation? I don't even like cooking when I'm not on vacation. haha...

Anyway ... thanks Dwight for sharing all your loyalty points with us and hooking us up with such a beautiful place! Yes, it's definitely your turn next. ;)

We are off to Downtown Disney. Ya'll have a good weekend!

Disney World ... We're Coming...

2011-01-21T17:03:00.000-06:00

Several years ago, it seemed like our kids were always getting a bunch of money for the holidays and for their birthdays, but they NEVER saved a dime. As a way to motivate them to save some money, we wrote out a family budget for a week long fantastic trip to Walt Disney World. Each kid had an amount to save.

We even came up with a "Help Wanted" board where I would post jobs that I was willing to pay to have done. We don't pay our kids for the standard chores ... cleaning their rooms, the kitchen and their bathrooms is part of being a member of our family. But, doing Mom's neurotic cleaning list ... like the baseboards, wiping the window sills, cleaning behind the toilet seats, vacuuming the edges of the room ... well, those things are paid jobs. When they finished a job, they could get their time stamp (a Mickey Mouse of course) which was worth a set amount of money. At the end of the week, each kid turned in their time card & I settled up with each of them. They paid their tithing, put money in the savings and kept what they wanted for spending.

As you can imagine with 6 kids we have some that are savers and some that are spenders. Our oldest is definitely a saver. Once she got the idea of Walt Disney World, she really became focused and soon she had her money saved. The others weren't even close! Dwight and I decided that she shouldn't have to wait for the others. So in 2008 Dwight and Jessica made the first trip to Disney World. It was reported to be fabulous!

Jessica motivated her brother David to start saving his money and he finally did it! So, tomorrow morning David and I will be making our first trip to Walt Disney World. We're super excited. David calls it "geek-ing out." Hmmm.... I wonder if you ever become too old to geek out? :)

Yay, Ryan!

2011-01-20T17:53:00.002-06:00

Tonight I walked downstairs to see Ryan holding his own bottle. Nelda has been working with him a lot on opening his hands and apparently it is working! She propped his elbows up to support them and he held his own bottle the entire time. It was so sweet! I'm so proud of him and so appreciative of all that Nelda does to help us. She really goes above and beyond the duties of a nurse. I feel so blessed to have her in our home!

2011-01-18T22:19:00.002-06:00

Seriously. Today I was clipping my 12 year old son's toe nails. Yes, I agree. It is something he should be able to do for himself. The problem is that he doesn't do it. Then he reminds me of the bag lady with the long, straggly fingernails that followed me through Central Park when I was 18. Creepy. Anyway ... While I was doing that, I noticed that he has HUGE toes. Just thought I'd share. Weird, huh?

No!

2011-01-16T09:54:00.000-06:00

Saturday night Dwight was scheduled to arrive home late. 10.30. Ryan and I had talked about Daddy get home. All day we had talked about it. Ryan was really missing Daddy. Around 9 pm I tucked Ryan into bed, swaddled in his fleece blanket and gave him a kiss. I said, "Daddy will give you kisses when he gets home. You go to sleep till then." That's when he did it. Ryan shook his head No. Over and over and over. Very clearly telling me, "No." No vocal sounds, but most definitely telling me No.

So, I kissed him (with a huge smile of course), pleased to see him communicating and so obviously understanding. I turned on his music and started to shut his door as I left the room, like I do every other night. He squawked at me to let me know that he did not want his door left. I went back over and repeated basically the same conversation, and the same actions, until I finally realized: He wanted his door left open.

An hour and half later when Daddy arrived home, Ryan was lying awake waiting for him. As soon as the door opened, Ryan called out to Daddy with his own vocal sounds that mean Daddy. Of course, Daddy rushed right to his side to give him the promised kisses.

I'm so thankful that Daddy is so responsive to Ryan and understands Ryan's language so well. It was so sweet to listen through the monitor to the two of them communicating in a way that only a boy and his Daddy can talk.

2011-01-11T10:27:00.000-06:00

I thought you might enjoy seeing a picture of this morning's scene at our house. Ryan's nurse, Nelda, had Ryan in his stander. She was opening and closing his hands while he watches Baby Einstein, which is good vision therapy for him. Deborah had covered him up with her blanket and then climbed up in his wheelchair to watch the show with him.

The other day she got in his wheelchair and wanted me to put a blindfold on her, let her touch his toys, and take her for a walk in his wheelchair. She "wanted to see what it's like to be blind and to be Ryan." So Deborah's been participating in a lot of stuff with Ryan. She's such a great big sister!

Test Results for Ryan

2011-01-07T23:36:00.003-06:00

I spoke with the nurse at Ryan's metabolic geneticist. She sent me his test results for his last set of blood work. You might remember that they tested him for several things including thyroid, amino acid levels, protein or zinc deficiency, etc. Well, several of the numbers came back out of range and they were unable to test the zinc specimen.

Ryan is really difficult to collect blood from. Like me, he is a difficult stick. His veins are extremely deep, tiny, and they roll. Additionally, his veins clot quickly. So, once they do get a vein, it frequently clots before they finish collecting all they need from him. That probably explains the zinc specimen being unusable.

As for the other numbers, well, they could be off for several reasons: stress, viral illness, diet, or real disease. So, to rule out the possibility that it was just a fluke that they are low, we are going to wait a week, and then retest. We will then compare the 2 tests to see which numbers, if any, are still low.

Honestly, I do not know what it means if any of them are still low. We tested for these particular things due to things like Ryan's developmental delays, seizures, hair growth patterns, and icy cold feet. So, it seems possible that some of these numbers may be accurately reflecting something going on with Ryan.

There is a part of me that wants to think that if it's just a zinc deficiency or a lack of enough proteins or a low thyroid, then surely we can just supplement his diet and "fix" the problem. But, there's the wiser side of me that feels the need to be cautious, prayerful, and to wait for more information. Besides, if we "fix" everything and Ryan takes off walking, who's going to snuggle with me for a long mid-afternoon nap? ;)

Of course, you know I'm just kidding about that, right? Cause if Ryan really decides he wants to walk ... or if God decides He wants Ryan to walk ... I'm pretty sure I'd be okay skipping a nap or two. =D

For my sister

2011-01-07T22:49:00.004-06:00

My sister, Joyce, has been wanting to see pictures of my hair. I don't frequently take pictures of myself and it seems my kids typically take out of focus pictures. But, I think you can get a glimpse of the cute hair style that my friend Michelle did for me. It's been really fun having short hair again. It's funny: I feel more like me than I do with long hair. I imagine that sounds a little odd.

Anyway ... this is what it looked like when I first got it cut. I don't know if you can tell from the picture, but she also colored it. It's a reddish brown. Great color for me. One of my favorite.

And, this is about 6 or 7 weeks later...

Okay, so remember I said, we're not photographers, right? I wasn't kidding. Sorry about the glare of the light. I was actually on my way out to get my hair cut and I wanted you to see how cute the curls were. I'm not entirely sure that once Michelle cuts them off that they will ever be there again.

You know how Jason's hair curls up in the back, mine does too. That's what this picture is supposed to show, you but instead it seems to show you that our tree wasn't really perfectly straight either. (Oh, well.... The tree looked really beautiful!)

Well, none of these pictures really do justice to the curls, but better than nothing, right? Just after I took these pictures I went over and had my hair cut. It always takes me a few days to adjust to hair cuts. So maybe I'll try some more pictures in a few days.

Dancing with the Homeless

2011-01-05T18:14:00.004-06:00

Today a noticed a link on a friend's Facebook status that was titled "Single Dad Laughing." It caught my eye because I know and love Cindy's sons. Love as in respect. Dwight and I taught two of them in Sunday School and they are just the kind of young men, that we hope our young men will be. I was hoping that something hadn't happened that cause them to now be single dads.

Instead, with just a little more reading, I found what I think might be one of my favorite blog posts yet. I don't say that lightly. It combines some of my favorite elements. Real life. Gratitude. Charity. Perspective. Friendship. Light. Truth. Pictures.

I hope you'll take a minute to read it, and to watch the video. I frequently skip videos, but I was really glad I watched this one. Click here & Enjoy!

Let me know what you think. Did you enjoy it? Would you dance with the homeless? Would you dance on camera? Hmmmm.... I like to dance. But, I'm not sure I'd intentionally make a video to post on the internet. Would you?

PS Just one more thing ... This is the only post I have read on the above blog. So, I can't speak to any of the other views expressed by the Single Dad. Just the one above post.

A Great Day

2011-01-04T22:44:00.002-06:00

Don't you love it when you have a great day? Today was one of *those* days. You know the type of day that you wish you could have every day. It wasn't a perfect day, but it was productive, fun, a good Mommy day, a good wife day, a good friend day, and good things happened today. Like ...

David taught me about George Washington today ... finally. ;)
Even after a long night with Ryan, I still woke up on schedule and did my morning routine.
I lost a little more weight and had a good workout.
I ate healthy today.
My dentist called (not his assistant, but the dentist himself) to see how I was feeling post root canal.
I made it through school routines with all 3 kids at home today.
I worked my way through part of my to-do list.
I've started working on one of my goals. I made a major decision and set up a plan. (More details to follow later.)
I had a fun, unexpected conversation with a good friend and that really brightened my day.
I had good conversations with my Mom, Dad, Sister and Husband today.
And, I scheduled a hair cut for tomorrow.

That's not all but that's it for tonight's list. I feel so blessed. I need to run downstairs now though. Mr Ryan is having a tough time with something and has been calling out in distress for a while and seems to need some reassurance from me. I better go see what I can do for him. I sure hope he's able to get some sleep tonight. Okay, truth be told, I really hope I'm able to get some sleep tonight. :)

Hello 2011

2011-01-01T00:47:00.003-06:00

It's early in this brand new year. I mean really early. 12.51 am. And I have decided to actually do the whole resolution thing. This year my resolution is to write new year resolutions.

So, here's my question: What would your resolutions be if you KNEW you would NOT fail?

Children say the darndest things!

2010-12-28T22:19:00.002-06:00

So today we had a new nurse at the house for the first time. She was great and we are looking forward to her working with us, hopefully for a long time. But that's not what this post is about. No, this post is about the fun little things that children say.

Let me set the scene for you: It's about 10 am. I am sitting on the couch having just finished my egg whites and arugula breakfast. Johnathon is somewhere in the house videotaping his Legos with his new camera and David is piddling around with something in the family room, mostly just avoiding his chores. Deborah is kneeling at the coffee table drawing for a while on a piece of paper with a pen that we got from the kitchen draw. The nurse is sitting on the other couch making notes as we talk about Ryan's daily routines.

Having noticed that Deborah was very anxious to share her new masterpiece, at the first break in conversation, I lovingly (and perhaps naively) asked her to tell me about her picture. She smiled and replied, "It's a picture of me naked in the snow." I laughed and replied, "Why are you naked in the snow?"

Are you ready for her reply? (Let me remind you: there is a nurse sitting on the other couch who has just met our family for the very first time. The first time.)

Deborah: "You left me there, Mommy, naked in the snow."

David is on the floor rolling in laughter. I'm hoping the nurse doesn't have a psychology degree and am wondering if she's looking up the phone number to CPS. Deborah has never even seen snow before.

Needless-to-say, I'm sure our family made quite the first impression.