Update on Daniel

It's been a long, long day.  We started our morning early by doing a service project with our FIAR group.  (More on that later.)  We gots lots of hugs and encouragment there and several friends even brought things for Daniel to have during his appointment.

This one was a huge hit - thank you Savanna!



We left early, went by Chick-Fil-A for lunch and then home.  I should clarify that this was Joshua, Christopher, Daniel and I.  The other children stayed with a friend at the service project to continue helping and to have a potluck lunch.  After giving Joshua his shot, Daniel and I headed to Duke. 

We arrived a little before 12:30.  It was after 5pm when we left.  It was a long, long afternoon.  We spent some time waiting - and more time in tests. 

We met first with the doctor who was very, very nice!  I explained about Daniel's sensory issues, being sure that it would come up.  She thanked me for letting her know, but I still wondered if it would make a difference.  She could not have been nicer or more patient.  She did a number of visual tests on him including checking to see how he viewed colors.  (He is colorblind.)  After testing and collecting information, we went to a different room.

The next series of tests was looking at his peripheral (sp) vision.  He had to  press a buzzer whenever he saw the light.  It didn't look good from my perspective.  The doctor told me later that this test was worthless in terms of information as she could see in her tests that his vision was better than it showed up in this test.   That was good to hear.  All I could think was that he had already lost some of his vision. 

Next came the drops.  It was awful.  He screamed and cried.  I had to help hold him down while he was on my lap.  He was distraught over this.  :-( 

We waited for the drops to take effect and then were back to see the dr.  She looked at his eyes and asked if he had had the drops.  His eyes weren't dilated.  She had to do the drops again.  :-(  Again, not fun!  More waiting.  Looking at his eyes some more.

Another room for testing.  I'm not even sure what this machine was doing.  Some sort of imaging.  He was looking at a blinking or moving green light.  He had to be still.  He is never still unless he is sleeping.  It was hard too.  After trying for awhile, the technician brought in someone else to take the pictures. 

One more room for the last of the tests.  In this one, she took a picture of his optic nerve.  He screamed when the light went off.  It hurt him.  I know it makes no sense to other people his extreme sensitivities to things.  It is real though and it makes me hurt for him.  And then he had to do this a second time.  He was again very upset and difficult to manage. 

Back again to meet with the doctor.  She pulled up the images of his optic nerve.  There is no clearly defined area (as there should be).  Also the nerves running to the nerve were showing signs of pressure.  She showed me a normal eye so that I could see the difference.  She said that this indicated that there was pressure behind the eye.  What is behind the eye to cause pressure?  The brain. 

She said that the next step was another MRI (for a different series of scans than had been done last year).  She said that she felt comfortable that there are no tumors!  Praise God.  She said this was based on last year's MRI.  I wasn't sure if things could change in a year, but I'll just accept this as good news.  She wants to find out what is causing the pressure on his eyes.

The next words just made my eyes tear up.  She said that she also wanted Daniel to have a spinal tap.  I know she could read my face and I didn't know what to say.  Of course I want to know if there is something there, but all I could think of was the pain that I know this causes people with typical sensory needs and then to multiply what that would be for our sweet boy.

As we were talking about what could be causing the presseure and what each would mean for Daniel, the doctor said she wanted to do one more test.  It's after 5 at this point and we head back to her office.  Daniel is not cooperative at all.  I am not surprised.  It is a non-invasive test though basically just "massaging his eyelids" with a tool that helps her to look at his eye (looked like an ultrasound).  I offer an incentive for cooperating and we convince him that he can do this while sitting on my lap.  As she scans his eyes, she sees calcification behind one of the eyes. 

She said this could be the cause of the pressure.  She said that instead of going forward with the MRI and spinal tap, that we'll just wait 3-4 months and come back for a repeat of the tests.  While I don't like the idea of another day like this, I'll take it over the other options!  If things stay the same, there may be no action needed at that time.  It does sound like this is something that will continue to be monitored though over his life. 

If we see changes - in vision or having headaches, this could indicate other problems.  The only risk she told me of related to this calcification was a type of stroke.  She also said it was a fairly common type of stroke and shouldn't be a worry.  (It seemed like this was something in adulthood too.) 

I know this seems cut and dried.  I'm worn-out.  Daniel fell asleep before we were a few miles from Duke.  It was a very draining day for both of us. 

In the midst of it all, I find that I have reason to be thankful.  I'm thankful that there is no cause to believe there is a tumor.  I'm thankful that he will not have to have a spinal tap.  I'm thankful that for now, we can just wait and see how things progress.  I'm thankful that he has no other symptoms causing concern like headaches or vision issues.  I'm thankful for an incredibly kind doctor and staff.  VERY kind and compassionate!  I'm thankful we didnt have to wait a month for answers!  I wish I had all of this in writing.  I wonder if I'm forgetting something or mixing things up.  It's a lot to take in.  She did give me a number and said I could call if I had questions. 

I'm thankful for our little boy.  I'm thankful for all he adds to our days and our lives.  While we don't have all the answers, things for now look pretty good.  We'll just wait and see how things look in 3-4 months and try not to worry about it until then. 

Thank you for praying for us.  It means a lot to all of us. 

With love

Leslie

Thanksgiving

We spent Thanksgiving in the mountains with my parents and my sister's family.  We had a wonderful time together.  This is the first time we've all been together since this summer.  We spent a week together at the beach just before Joshua was diagnosed with diabetes. 

As I look through my pictures, I realize that there were a lot of things I didn't get pictures of this year!  I should have taken more pictures.  Oh well. 

We enjoyed a traditional meal with lots of yummy foods.  The table was beautifully decorated.



Rebecca added a new piece to the decorations this year in placecards.  She made these very cute turkeys for each person!  Didn't she do a great job?



We had a nice selection of pies for dessert (the only food I got a picture of this year).  Rebecca made 5 different pies for us to choose from.  She also calculated the carbs on each of the pies too! 



We had a relaxing time while we were there.  We played games.



The girls did some knitting.



We enjoyed a play that Rebecca wrote for Thanksgiving (which was really cute!).





We read books, talked and did some organizing.  Roger took some of our children to a Christmas parade and they enjoyed getting some candy.  It was fun to just spend time with family.





Eliana got an early birthday present.  A stuffed animal that sings Happy Birthday.  It's mouth moves and so does the animal.  Eliana loves it!  She quickly learned how to make it sing and has been having a great time with it.  (And thankfully we didn't have to listen to it all the way home either.) 



Thanks Mom and Dad for having us up.  We had a great time and appreciate your hospitality!  We look forward to having you here sometime soon.

I have much for which I'm thankful and enjoy this holiday and the traditions that go with it.

Blessings,
Leslie

Prayers please for Daniel

On Thursday of this week, Daniel will be going to the Duke Eye Center to meet with a neuro opthamologist.  We have been told that he will be there for 3 hours of testing, though I don't know what any of the tests will be.  I do know that his eyes will be dilated and that is really about it. 

I think 3 hours of testing could be hard for anyone.  I know that having your eyes dilated is no fun.  For our sweet little boy with sensory processing issues though, it is all magnified and compounded.  It's going to be a hard day for him.  I'm going to be taking things with me to try to help, but it's hard to plan for something when you really have no idea what is going on.  (If anyone has suggestions, I'm open to hearing them.) 

For those who may have missed an earlier post on this, Daniel has "prominent optic nerve pallor".  This was seen at his last routine eye appt in Oct.  She has referred us to a specialist to see if there is something going on.  I've googled a little bit to find out more of what we are dealing with.  Pallor is also sometimes called "atrophy".  It also appears a little more worrisome that it is in just one eye. 

I have to be honest -  I'm scared.  I try not to think about it much and that is helpful.  (The Scarlet O'Hara method of dealing with things.)  There are times though when I have to face it.  I'm not trying to borrow trouble and thus try not to think on the "what ifs".  I still find that I am fearful of what the future my hold for our little boy.  Scared that there will be something.  Scared that it will be another something "big".  Again though, I don't dwell on it. 

I know God is holding our little boy.  I know He loves us.  I know He is with us.  It is really all I can hold on to right now. 

I've been told that it may take a month to get the results back.  I'm really hoping that is not the case!  I would love to know more on Thursday.  I really just want to hear that he is fine. 

Thank you for praying once again for our family.

With love,

Leslie

P.S.   I've been trying last night and again today to post pictures and am having troubles with photobucket.  Not sure what is going on there, but am hoping it is fixed soon.  If not, I may be posting somewhere else and will certainly update here. 

Rebecca's Birthday

Just wanted to share a little bit of how we celebrated our sweet girl's birthday.  Roger took the day off from work as is his custom for their birthdays.  (Isn't that a great tradition?!)  Rebecca wanted to go to the park to picnic and play.  We invited some friends and headed out to the park. 



It was a chilly day, but still fun to hang out with friends.  One sweet friend brought cupcakes (thank you Rebecca!).



The kids played capture the flag and tag.  Fun games that can involve all who want to play.  Of course there was a playground to play on as well.



We even got a family photo!



After several hours we went home.  Rebecca and I then headed out again.  We first went to Panera to get smoothies.  Yum.  Then we headed to a spa for pedicures.  We were the last people in there for the day.  It was fun to have some pampering.



Then home for dinner that Rebecca picked out.  She also picked out Key Lime Pie for dessert. 



Most of the rest of the evening was filled with packing and baking.  Rebecca made 5 pies for Thanksgiving.  We had a great Thanksgiving week-end with my family and I'll post more on that tomorrow.

Blessings
Leslie

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Happy Birthday Rebecca!

Where do I begin?  I think I must say that with all of the birthday posts.  Just having these days come causes me to be reflective and to think back in ways that I don't always take time to do.  Has it really been 14 years?!  Don't I sound like an "old person" just saying that?  I remember when I was that age wondering why older people were always so surprised that I had gotten older.  I didn't understand how fast the years could pass.  I didn't know that I would want time to slow down one day. 

I have even joked with Rebecca that we were going to skip this one so she didn't get older so quickly.  She laughed - but was not in agreement.  Guess you only want to skip birthdays when you get older.  LOL



I remember being pregnant with Rebecca and having a vision that I would be having a girl.  I had wanted a "Rebecca" for years.  I was so certain I was having a girl, that my mother had bought only gifts for a girl!  I was delighted with our beautiful new daughter - and yet had no idea the joy that was awaiting us.  I couldn't even begin to fathom the blessing she would be - to me, to our family and to so many other people. 

Where do I start?  I'm thankful for the gifts Rebecca has been given and the beautiful way she uses those gifts to bless others.  She is creative, talented and hard-working.  This is evident in her Wholehearted bracelet ministry (see sidebar for details) in which she has made hundreds of bracelets and raised over $8000 for Duke Children's Hospital.  I see these qualities in her day to day life as well as she is constantly creating things - both craft projects and also cooking projects.  All of us benefit from these!

Rebecca is bright, inquistive and interesting.  She is a joy to teach and has always been a great student.  She is motivated and willing to do all that is asked of her.  I know this will serve her well throughout her life. 

She is brave and willing to try new things.  Starting a business at age 11 is amazing to me.  Speaking to a group of 150 is daunting - and she was wonderful.  All this for a young girl who is somewhat quie and a little on the shy side - until you get to know her. 

Rebecca has a heart to serve.  She demonstrates this every day in so many ways to her siblings.  I would not be able to manage nearly so well without her capable help!  She has also served in the community.  She is wonderful with young children.  She is energetic, athletic and sensitive.  She is also unassuming - so much lies behind her sometimes quiet exterior. 

I have loved being your Mom, Rebecca.  I have learned so much from you.  I love spending time with you, sharing interests and just talking.  You are all I could have ever wanted in a daughter and so much more!  I thank God for you every day and look forward to another amazing year with you!  I know that God has great plans for you.  I have loved watching Him at work in your life already and look forward to seeing the work He will continue to do in and through you.

I love you!

Mommy

Life is made up of little moments

So much has happened over the last several years to make me stop and appreciate the little things.  I think it can be easy to become overwhelmed with the big events, projects and deadlines that occupy so much of our energy.  These can become the focus of our scrapbooks (and sometimes our memories).  It isn't the bulk of our days though.  Most of our time is spent in the ordinary, every day things.  Things that are just as sweet and maybe even more important than those big things.  I want to remember to stop, enjoy and spend time in these moments as it is what my life is made of.

We've been enjoying being outdoors this fall.  I love the fall - the colors, the crisp sounds, the cool breezes (well, eventually we get those!).  We have been studying clouds for a week.  Wouldn't you know that 4 of the 5 days we had beautiful, clear - cloudless - skies!  LOL  The other day was our field trip day which has some great clouds which we enjoyed seeing but weren't able to draw in our nature journals since we weren't at home. 

Even without the clouds we found things to enjoy in nature.  I loved the color of the blue sky against the color of the changing leaves.  Isn't this beautiful?



I also enjoyed seeing my children thrive in the fresh air.  I think it does them good to be outside and I do want them to appreciate the many amazing things that  God has made for us to learn about and enjoy. 



I also enjoy seeing them have fun together.  It does warm a mama's heart to see a site like this one.



Rebecca took advantage of the beautiful weather to take her siblings to our neighborhood park one day.  They had fun playing and I loved that she took pictures while they were there!  Isn't this a sweet one?



She also let Eliana help cook again.  Have I mentioned what a great big sister she is?  I wonder if they truly appreciate how blessed they are to have her?  I probably need to help this along. 

Nothing big.  Nothing dramatic.  Just a few of life's sweet little moments.  I'm loving them!

Blessings
Leslie

Field Trip - Falls Lake

I love field trip days.  I look forward to the time learning more about nature or history whatever out topic of the day may be in a fun and hands-on way.  I look forward to seeing our friends.  I just look forward to all the day has to offer.

As our field trip day approached last week, it was raining and the forecast was grim.  It was calling for rain and our field trip was an outdoor nature one.  I wondered what the day would hold.  We were assured that it would be a go - rain or shine - as shelters were available (unless it was storming). 

As we drove over to Falls Lake, a few drops were hitting the windshield.  A number of people had to cancel for various reasons.  When we arrived, we were a small group.  It was overcast and dreary  ... and yet beautiful.



The haze obstrucing the view.  The brilliant colors of the leaves, muted through the fog.  Can you see God in views like this?  So many times, I want my path to be clear.  I want to see where I am going.  I want to know what lies ahead.  I want God to tell me what His plans are.  I want.  I want. 

What I don't want is to wait, to wonder, to worry.    I don't want to let go of my hopes and dreams.  I don't want life to be so unfair for so many.  Again, it is all about what I want.  Sigh.  It is hard when you can see so clearly that your focus is on yourself instead of on God. 

I want answers to so many things right now.  Things I've been praying about for a long time.  It is hard to wait and yet I really do want what God wants for my life.  I know He loves me.  I know He is working in my life.  I know He is there - even when I can't see clearly. 

There is beauty in so many places if only we will stop and look.  There is often beauty in places that may at first not look beautiful at all.  My eyes see things so differently now than they did a few years ago.  I'm thankful that God has given me that gift.  I continue to pray that God would give me His eyes to see things.  It is an area in which I fall short often.  I think that the many struggles that our family has been through have helped to open my eyes to so much.  I'm not the same and for that I'm thankful - and yet there is still so much work left to be done in me.  I think the more I learn about Him, the more I can see that I lack.  I'm thankful that I don't have to earn His love, but that it has been freely given to me. 

Now, on to the field trip.  We split into 2 groups.  The younger children were learning about Dangerous Plants and Animals.  The Ranger talked with us about spiders, snakes, fire ants, bees, ticks, poison ivy and unfamiliar dogs.  He gave the children a lot of good information on what to do when you encounter these animals/plants.

We looked at pictures in order to recognize various species such as the Black Widow spider.



And even saw some that had once been alive.



The most dangerous snake in our area is the Copperhead.  It was good to see what it looked like so that we could hopefully recognize one we might see.   (Though I hope we never see one!)



Due to its coloring, this snake can easily hide among the leaves.



The Ranger also shared the most poisonous snakes have larger triangular shaped heads and eyes shaped like slits.  One of the snakes that breaks these rules though is also found in NC, though typically not near us.  It is the Coral Snake.



 In order to help remember this snake, the children learned a rhyme.

Red and yellow kills a fellow
Red and black, OK  Jack

They looked at some snake skins.



We walked around a bit and looked at the poison ivy vines growing on some nearby trees.  Then we just played.  It is a beautiful area and I'm thankful we had the opportunity to be outside today. 



While we were with the younger children, the older kids had a class on Compasses.  They learned about how to read and use a compass and then were tested on this by having to put their skills to a test.  There were directions given and then they followed them to see where they ended up on a numbered line.  The teams were given points based on how close they were to the right numbers.  I heard great reports on this class, but unfortunately have no pictures to share.  Please check out my friend Lynn's blog (click on her name) for more details and some pictures of this group. 

A couple of hours later, some of the fog had lifted and the view was a little clearer.  I love the reflection of the trees!





At lunch, we had a scare as Joshua's blood glucose numbers were very, very high.  I haven't seen numbers like this since the week he was diagnosed.  It was frightening.  I had him wash his hands again and then we did a recheck.  The number was accurate.  We treated it and thankfully he was down 200 points by mid-afternoon and another 100 points by dinner time.  Yes, it was that high! 

He ALWAYS spikes on our field trip days.  Always.  I'm not sure if it is just the excitement of being with friends on a fun outing, but I've come to expect higher numbers on those days.  Just nothing like this.  It usually evens out by later in the day too.  I'm not sure if there is more I could or should be doing about it either.  I have talked with his doctor about this.  I'm going to try to make sure he is well hydrated on these mornings and just continue to do our best.  (There is no other factor that is different in terms of food, carb counting or amount of insulin.)  It's a mystery as this disease often is.  It can be a hard thing. 

So often I'm asked if his diabetes is "under control".  I'm not sure if it ever will be under our control.  We are doing our best to manage it day by day and I think that is all we can do.  Just yesterday a friend told me that it was still a struggle for her dh who also have Type 1 and that he still has highs and lows.  I think part of the challenge is that so many different factors can affect your numbers.  We are learning though and hopefully we'll continue to improve and get better.  There is a high incentive to do well and with God's help we will continue to work at it each day.

I feel like I've been rambling and want to end with some things I'm thankful for.  I'm thankful for our health.  I don't think I'll ever take this for granted again.  I'm thankful for a wonderful medical team.  I'm thankful for friends.  I'm thankful for a great FIAR homeschool group.  I'm thankful for the many things in nature that God has made - each pointing back to a wonderful Designer.  I'm thankful for my family.  I'm richly blessed.

With love,

Leslie

Thanksgiving Fun

What I would love to be able to write is what a sweet fun time we had today making this craft.  I don't do crafts all that often and the boys typically really like doing them.  I was looking forward to them having fun with this activity.  I would like to say that we enjoyed laughter while we talked about turkeys and the day of giving thanks.   I would like to say that everyone was happy and cooperative while we were working. 

Instead though, I'll tell you what really happened.  We waited until the end of the day to do this craft.  (That was probably mistake number one, but we had a couple of therapies and a science lab interupting our day).  The boys were to have gathered pine cones earlier in the day.  One hadn't and went out to find one in the dark.  It was a small one and he was not pleased with it.  Another boy had gathered two earlier in the day.  Well, the first boy decided he wanted the extra one (though wasn't all that nice in asking).  The other boy didn't want to give his up.  Hearing them argue over a pine cone didn't do a lot to put me in the best of moods either.  And no, I didn't take advantage of this teachable moment to talk about sharing or listening or anything else.  My first thought was that I needed to remember this when it came time to do Christmas crafts!  lol

The boys were a little ... less patient that I would have liked for them to be.  I probably was too!  The pine cones were prickly and didn't feel good on the hands.  The pipe cleaners hard to manuever and the level of difficulty was just too much for my boys at this time.  I ended up helping them a lot.  (And did I mention that they weren't really being patient?) 

In the end, we got them made.  And they are cute. 



I think the lessons that I need to learn are several.

*Don't wait until the end of the day for crafting when people are tired and the grumpiness comes on faster.

*Check the level of difficulty before starting a craft.

*Patience, patience, patience.  I need to model it and teach it through my actions.

I know we'll remember these turkeys - and hopefully not the bickering that went with it.  I hope I'll learn.  I wasn't at my best tonight, but thankfully, there will be another chance.  Thankfully the boys are pretty forgiving and love me in spite of my flaws (and the feeling is very mutual).  I'm thankful for the times that I fail for it reminds me that I struggle just like my children do.  It reminds me of how much I need a Savior to shape and mold me into the image of the one I want to reflect.  So while it may not have been a teachable moment that was used wisely, I did learn from it. 

Just thought some might like to see a less than stellar experience.  We all have them.  Sometimes I think people can feel discouraged when they hear about "all" that someone else is doing.  Most of us tend to share the positives (I'm no exception).  Just know that we all have those days - and so do our children.  I still have much to be thankful for and yes, I will still do crafts with them at Christmas. 

Blessings
Leslie

P.S.   If you are looking for something fun to add to your November, check out the blog of my FIAR friend Kendra   She has posted a great list of activities to do celebrating Thanksgiving. 

FIAR Co-op: Gullywasher

We had another fabulous co-op day.  I feel so very blessed to be a part of this group.  The talent, creativity and energy is amazing - and a delight to be a part of.  And fun!  This is a fun group of children and moms! 

We started out talking about fats.  Hmmm ... interesting start to the day, isn't it?  But, it did weave in through the other topics.  The children went to a table to see lots of jars filled with interesting colors and substances.  Each had water and a fat in the jar. 



The jars were passed around and the children shook them up to see if they could get the fats to dissolve.  Some did while others were more resistant to change forms.  We heated a couple to see if this made a difference and it did for a short time.  It was interesting to learn and observe the difference.  The shaking was a hit too.



Next it was time for art.  This involved fats too!  The children did a crayon resist using light colored crayons on art paper.  The crayons were a fat.  They drew designs on their cards and then went over these with watercolors.  Each child was given 3 cards on which to paint and later send to a friend or grandparent.   Look at this beautiful example.  Can you see the lightning?



It was fun to see the various designs that the children came up with and how the watercolors just did not stick to or mix with the crayons.



I didn't get a good close-up of the art, but you can see the technique in the red card on the table.  The word "Hello" is written in crayon then painted over with red paint.  The word just pops out from the paint.  It's neat and it a good use for those white crayons!



The next part of the lesson was about taste and the ways in which our body sends messages to the brain.  The children formed a chain by holding hands.  They were to squeeze the next persons hand and say "ouch" to see how long it too the message to get around the group. 



Then we learned about the 5 (yes, one more than I learned about in school) areas of taste.  The new one is savory



We also learned that the tongue can taste all of the areas throughout and not just in one spot.  That makes more sense to me.  This ball was a representation of the various areas of taste (see how the ends on the ball match the chart above?). 



We learned about what happens when we eat something hot!  The Scoville chart for measuring heat was discussed and various types of peppers listed.  (This may not sound interesting, but our energetic teacher made this very exciting and hands-on!) 



When we eat something hot and then drink water, the water acts to push the hot further into our taste buds making it seem hotter still.  If however we choose to eat or drink something with fat in it like milk or yogurt, then the fat will bind with the heat and pull it away from our tongue. 

Now, it was time to put that to the test.  The table was lined with 10 containers numbered from 1 to 10.  Each person started at 1 which was the mildest with no heat in it at all and then went as close to 10 as they wanted to go!



They each took turns.  Some needed some coaxing to keep going.   Others were eager to try more. 



A lot of the children made it to 10!  (It was yummy!)



While the older kids were learning, Rebecca was playing with Eliana and her friend.  She even brought some craft things for them to work on during this time.  What a thoughtful big sister!  She is awesome with younger children!



Daniel was given a neat picture from his friend Miss Lynn.  It is the leaves that they gathered at our last co-op.  She laminated them and made the page so that it could be hung on a window.  He was delighted and loves seeing it in our kitchen.  Wasn't that so very thoughtful?!  Thank you friend!



Another fun day with friends.  I love these days!  Hope you enjoyed the pictures. 

Blessings
Leslie