Our Little Miss Sunshine

Still playing catch-up, though we had a productive day.  Everyone has finished their boxes, I've refilled 3 sets and have to grade a few more things.  All in all a pretty good day.  Most of it is probably because we were at home with no distractions.  Our therapist had to cancel and so our day was free. 

Tomorrow we have 2 ped appts - 2 different peds in 2 different locations (same office, but different branches).  Eliana will see our beloved Dr. L for a check-up.  I'm not expecting any new news!  Should be routine.  She is a wonderful ped and I enjoy seeing her (though not always the reasons I need to go see her).  Isaiah also has an appt.  I'm hoping all goes well.  I need to make a list of things to be covered for him. 

On to other things.  I thought I'd update a little bit on Eliana.  She continues to be a delight!  She laughs (and giggles) often and just finds the best in every situation. 

Even things that don't look good to me seem like fun to her.



My little girl that struggled so much to learn to eat - now loves it.  And she is motivated by food!  Who would have though?!  We are using food to get her to talk more.  She says/signs "more, please" when she wants something.  She is loving to snack too!  She also loves to help herself to whatever she can reach in the pantry.

Eliana also likes to help clean up.  She is very good about helping to put things away.  She also loves the vaccuum!  She has always liked the vibration, but now she is also enjoying using it too. 



Eliana is a good sport and will play dress up often.  She seems to like doing this more and more now which is a good thing as it is a popular activity around here.



She can still be a girly girl too.  I wish I had a better shot of her hair.  Rebecca fixes it in such pretty ways.  If only Eliana would leave the bows in her hair!



Eliana continues to talk and sign more and more.  She is a smart girl and I love watching her learn and grow and develop.  Each milestone is sweet as they are spaced out a little more than is typical - and that's fine.  We are enjoying the journey!

Thank you God for blessing us with an amazing family!

Blessings
Leslie

Pirate Fun

Still playing catch-up with emails, comments and everything else.  I'm making progress though.  Still need to download new pictures.  I'm going to continue doing some posts from activities from last month until I get a bit caught up.

We started this unit in June - the day Joshua was diagnosed with Diabetes.  We spent most of that week in the hospital and the next 3 weeks dealing with a nasty virus, so this unit got put on hold.  Reading my friend Dawn's blog inspired me to pick it up again.

 Here are some of the boxes I packed the first day.  We also read some books and watched Veggie Tales movie Pirates Who Don't Do Anything.

This was a cute little chapter book.  There is at least one more in the series. 



Some dot paints just for fun.



I thought we'd also study some of the ocean since we'd just been there and obviously it is where many pirate adventures take place.  I included some shells, magnifying glass and identification book in one of the boxes.



They picked some of their favorite shells to draw in their nature journals.

Some drawings of two shells we find frequently when we are at the beach.



 We have a lot of fun and interesting books on pirates that have been collected over the years.  I've had a couple of boys interested in pirates, plus it has been a popular item for several years it seems. 





This was the start to a pirate treasure hunt.  I hid clues/rhymes around the house.  With each clue, they found a piece of the puzzle.  They solved the riddles and ran around the house looking for the next clue.



They picked up pirate hats with one set of clues.



I love seeing the boys laughing, working together and having fun!



The treasure at the end was candy and a new game.



Rebecca also made up a treasure hunt for the boys on a different day.  She put so much work into it!  I love seeing her creativity and energy put forth in such a thoughtful way.  She came up with the idea on her own and asked if she could do it.  It is a sweet joy to see her bless her brothers by doing this for them!



 This picture I just thought was fun!



In this hunt, they had a piece of the map with footsteps and directions marked out.  The trick was that they had to be footsteps using Daddy's shoes.  This was harder for the boys than it looked.



 

They gathered more of the map as they went around the yard.





When they had found all the pieces of the map, it was time to find the treasure.  This time the treasure was money (quarters) which they loved. 



Eliana found the "X" that marked the spot.  LOL  It didn't mess up the hunt though as this wasn't the X that was finally used. 



All in all, we had a fun time learning a little more about pirates, but mostly just having some fun together.

Blessings
Leslie

Starting back to school

Our family has been out of town for a week - which is why my blog has been soooo quiet.  I had written some posts that I had hoped to post while we were gone, but instead, I stayed off the computer.  It was a nice break - though I'm trying to play catch up now.  I'll share more about our vacation soon - after I upload the hundreds and hundreds of pictures that we took.  ;-) 

We have been in school for 6 weeks now.  I like to start in the summer as it gives us time to take off in the fall when the weather is nicer  - and we have several birthdays in the fall.

One of our family traditions is getting new school supplies and books as a "surprise".  I piled up each child's things in chairs and on the sofa in our family room and then they all came in to see what surprises were there. 

Christopher has a lot of reading to do this year.  He enjoys reading so this shouldn't be a huge burden to him.  Some of his coursework (11th grade) includes:

Advanced Biology (Apologia)

American History (Notgrass) - includes Bible, History and English units

Algebra II (MathUSee)

Movies as Literature



Rebecca and Christopher are both doing US Geography.  They are learning a lot about the states through the various projects.  One of the projects is to cook a meal from that state.  I am loving seeing them work together in the kitchen - and loving having them cook!  They have made 1 to 2 meals per week and they have been very good! 

Re

Rebecca loves to cook and was excited about this new part of the curriculum. 



Rebecca (8th grade) will be doing unit studies (Hitty from FIAR is the current one and then we'll move to Presidents), Algebra 1, Rainbow Science, logic, Write Shop and more.



Joshua will be doing Volume 4 of FIAR this year.  He is also working on Epsilon level in MathUSee, writing in a journal, logic and more.

Isaiah will be doing Volume 4 of FIAR too.  He will continue in math and handwriting.  What I am working to add more of to his day is science.  He loves science experiments.  He has been very excited to do them and I love seeing his enthusiasm!



Isaiah is excited about pirates - and we did more study on pirates to take advantage of this interest.  More on this in another post.



I bought Funtastic Frogs - mostly for Daniel, but thought that Isaiah might enjoy them too.  We are just getting started, so I'll have to post later as to how that goes.  A number of the books are geared for K-2 though so it seemed a good thing for both boys. 



Daniel will be doing Five in a Row, math, handwriting - mostly hands-on things.  The ABC wikki stix were to help with learning the alphabet as well as helping with his sensory needs.  He enjoys hands-on projects and has very good fine motor skills.



The surprise Daniel liked best was this treat he first had as part of his therapy - when he did not like pizza!  Thankfully he loves it now!



Eliana had a small stash of things that she was happy to play with.  I've already gotten most of her "school things" in boxes and she is already working on learning a variety of skills from puzzles to lacing and more.  I'll post (hopefully) at a later date more about what I'm doing specifically with her.



 This little sweetheart is just so easy to please.





There was also a pile that was for everyone.  The large bin contains science experiments in a bag.  I hosted a swap locally and we had a full group!  We have a lot of fun experiments to look forward too.  My younger boys have loved doing these!  There are a few more scienc books and some CDs/DVDs to enjoy.



We also eat breakfast out.  This year we went to IHOP and had a yummy meal together.  Its a fun way to start the year. 



I have written out goals for each of the children for the upcoming year which are shared with them too.  I'm excited about the year and feel better prepared than I have in a few years.  Praying that this year would be one in which we would learn - not just academics, but more about God, that we would grow spiritually, emotionally and intellectually and that we would be a blessing to those around us as we live our lives.

I'm thankful for the privilege of being able to homeschool and don't take the responsibility lightly.  It is a blessing.

With love
Leslie

Test results are in

Thank you for your prayers and words of encouragment.   I'm sorry it's taken me awhile to get back.  My day was non-stop and I also just needed some time to think things through. 

We have some diagnoses.

*AD/HD - Hyperactivity/Impulsive
*Learning disability in reading
*Learning disability in writing (this was a very weak area) 
*Significant weakness in working memory
*Processing speed is lower

Here are some of the recommendations. 
*medication for the ADHD.    That's really not a first route I want to try.  We'd need to meet with a pediatric pyschiatrist for this. 
*OT eval and therapy to assess his fine motor and writing abilities
*a LOT of ways to present information for reading, writing, math, etc.  I will need to make some changes in how he is taught or presented information.  Will probably try to meet with a specialist to help me with this. 
*Evaluating his hearing to determine if there may be auditory processing
*possible therapy

The bright spot was hearing that cognitively he is very smart.   Also, his executive functioning appears to be intact.  His strengths are in visual processing and verbal processing.

From here, I'll be looking to set up more appointments for him to see what our options are for helping him.  Hearing that he is in a "window of opportunity" is good as it means this is a critical time to help him.  It is also a little scary as I don't want to mess him up.  Based on the recommendations (learning around as few students as possible, quiet setting, allowed to move/stand when working, lots of physical activity), I'm so thankful that we are homeschooling him.  It would be very hard for him to be in a traditionaly classroom.  

None of this was a huge surprise - though I would have loved hearing less.  One of the things we had to do (parents) was to fill out some questionnaires about Isaiah.  Mine pretty much highlighted his areas of struggle.  The tester told me that I was correct in my suspicions.  It is a nice thing to know your child well, though this is one of those times I wouldn't have minded being wrong (meaning there was no problem at all). 

More to learn.  More to research.  More.  More.  More.  I know God is carrying me because the load is just too much some days.  I've cried several times - not just because of the diagnosis, but also the bigger picture. 

I would love continued prayers and encouragment.  I know that I need to depend on God to give me the support I need, but sometimes it just is nice to hear that I'm doing a good job.  That I can do this task I've been called to.  That I am capable. 

Having so many issues - and all so different - can feel very daunting.  Sometimes I feel so inadequate.  He is strong though.  My plate seemed quite full awhile back and yet there is still more room.  Some days I feel so burdened and yet I also feel blessed beyond measure.  Through all of it, He is there.  He is good.  He loves me.  I know this to be true.  I'm blessed and I'm thankful!

Thank you for praying for us.  My next round of requests will be in another week when we have a series of medical appointments and procedures.  We'll be awaiting more news and hoping not to be facing surgeries.  I'll be sure to let you know. 

I'm very thankful for the many friends and family that have helped to carry the load for me so very many times over the last 2-3 years.  It's been a path with turns and twists I never expected.  It would have been much harder without your prayers and words of encouragment. 

Love,
Leslie

Duke Lemur Center

Today with our FIAR group we visited the Duke Lemur Center.  It was a cool (for the south in September) day - just perfect for an outing.  We split into groups based on the children's ages.  I had 2 in the oldest group, 1 in the middle group and I was in the youngest group with other 3.  That left Joshua in a group without anyone in his family.  I had several sweet friends who had said that would help keep an eye on him.  He was comfortable with it too.  We checked him just before the start of the outing and he did just fine.  He took his kit and supplies with him, but thankfully didn't need it.



We learned about lemurs - who come from Madagascar. 



We learned about the different types of lemurs.  We visited both some nocturnal ones (in darkened cages) and those who were up in the day like us.  The lemurs are really cute!  I love watching them jump!  They are social creatures and live in family groups.







We also saw a short film that explained more about what type of research is being done here and how the lemurs are cared for.  This is quite an interesting place.  If you live nearby, you can call to schedule a tour.  He said that no group is too small. 



After our outing, we went to a nearby park.  We just played, talked and ate lunch.  It was a relaxing time and so nice to be back with friends - both new and old.  Even a little sprinkle did nothing to dampen the fun.  (Though it did mean that I put away my camera and got only a couple of pictures here.)  I did get this cute one of the girls though.



A fun day with our friends.  I'm thankful for time to spend with friends learning and going on field trips.  I love field trips!

On an unrelated note, tomorrow we go to hear the results of Isaiah's testing.  I would love prayers for our hearts to hear the news and be ready to do what is needed to help our wonderful son.  I'm expecting it to be a little hard - you never want to hear that anything is wrong.  I know that there is something going on and I'm eager to know exactly what we are dealing with.  I'm not sure when we'll update on this as we learn and deal with the news.

Blessings
Leslie

Diabetes Clinic Update

Just a short update on our clinic visit yesterday.  It was a good visit.  The staff there are very nice. 

I was eager to see his A1C number.  This number measures his blood sugar levels over the last 3 months.  For a non-diabetic person, normal is below 6.  When Joshua was admitted to the hospital at diagnosis, his level was 15.6.  That is so high it isn't on most of the charts.  At our first Diabetes clinic visit, it had dropped to 12.  Yesterday it was a 9!  Yippee!!!  They were pleased with this number and so am I.  Our goal now is to get below an 8. 

There was concern that he is still seeing some 300s for his blood sugars.  We may be changing some of his med dosages if this continues.  I don't want to see those either - but prefer that to the lows!  The dr did say that they didn't want to see lows either because going too low can cause "brain damage".  I really wish she hadn't said that in front of Joshua.  :-(  Hoping it went over his head - but not much does to be honest. 

We received information on getting a pump.  We need to attend a carb counting class and a workshop on the various pumps.  Both classes on only once per month and on the night of Joshua's football, so I'm not sure when we'll be going.  Not this month for sure given the dates.  I don't think he wants to get the pump until after football anyway.  We'll see. 

One other piece of information was a surprise for me.  The dr mentioned the celiac screen.  He had that done at the hospital and it came back negative.  I was very thankful for this!  What I didn't know is that this can change and isn't a permanent thing.  Bummer!  Apparently there are several autoimmune things that Joshua will continue to be checked for including celiac and thyroid.  (Diabetes is also autoimmune.)  I hate that there are so many other things that can be attached to diabetes.  I'm thankful that we aren't dealing with them now.  I'm thankful that we follow and serve a God who will carry us through whatever we will face. 

So, all in all, a good visit.  The dr gave me her email and phone so we could keep in contact about his numbers and changing his doses if needed.  I'm thankful that there is such a great team of drs that we see!  We won't be back until December.  Hopefully we'll see really good numbers then too!

I'll be doing some retroposting for some of the next posts - our start to school and some of what we've been up to.  Lots of pictures.  :-)

Thank you for your prayers for our family. 

Blessings
Leslie

Update - a short one

Sorry I've been quiet - we have spent the last week at the beach.  I thought we'd have better access, but it was spotty and a little slow, so I wasn't able to post here.  That's alright too though as we just had a fun time hanging out.  Our friends from VA were there too, just down the beach a bit and it was great to hang out with them during the week too.  I'll try to post pictures later this week.

We have a busy week ahead.  Tomorrow, Joshua will be going to the Diabetes clinic.  I'm looking forward to seeing how he is doing (A1C numbers) and hope that his numbers have improved.  We'll also be talking about getting him on the pump.  He won't get it tomorrow as we'll have to go through some classes first. 

His numbers at the beach were pretty good - though he began to have a lot of lows.  I think it was from all the time running around on the beach playing.  I adjusted with his snacks and that helped a lot.  The last day we saw highs - really unexplained.  Things seem to have evened back out today, but I'm not sure what was going on with those.  This disease can be so unpredictable!

Also this week we have our usual round of therapies - 2 speech, 2 OT, 1 PT, and 1 music.  It will be nice to have those after having a week off.  We are blessed to have a great team of therapists too.

We have a field trip coming up and I'm praying all of my children stay well!!! 

I'm working on making Colonial costumes for my children to wear when we visit Williamsburg.  I'll also be making 2 lunch and 2 dinner meals for the gals (and family) who run a local consignment sale.  I have done some shopping there and got some great things for our kids.  (Especially Eliana - it is sooo much fun to shop for a little girl!)

I got to sleep early last night - before 11pm!  It was nice, so nice, to get more sleep.  I was able to wake up at 2am.  This has been my fear that I wouldn't wake up for Joshua's check which is why I usually stay up until then.  I'm hoping I can do better about going to sleep earlier and just waking to the alarm. 

Will try to load pictures soon.  This isn't a real exciting post - sorry!  Just trying to catch up again.  :0)

Love
Leslie

Thank you

Thank you for your prayers.  Today has been a much lighter day. 

Everyone is feeling well!  Praise God.  I'm so thankful for good health! 

Joshua's numbers have been much better today.  I changed the dosage and he had no lows!  It's such a juggling game.  I know we will have highs and lows.  So many different things affect numbers, and we will learn more about this as we go.  We'll never be perfect - though will surely try our best!

Today was a very full day.  We started the day with speech therapy.  Then we drove to a nearby town for a couple of hours of testing.  Everything went well and we should have some answers in two weeks when we meet again.  I'm anxious to know - and yet wonder if I already do.  I've done research and one of the issues I've wondered about for some time.  Hopefully, knowing will be the start to learning more about how to best help him be successful. 

Then home for some cleaning and science lab for the older kids.  Then more cleaning as we prepared for friends to arrive for the week-end. 

I've many things to be thankful for - so many.  Thank you for the prayers, the notes, and the encouragment!!!  God used each of you to minister to my heart and I am grateful.  I was also blessed by several friends coming to do things for me - pick up food for dinner and running errands.  This was a sweet act of servanthood and a very nice way to lift the load.  Thank you!

I'm thankful for good health.  I'm thankful for wonderful family and friends.  I'm thankful that God loves me, carries me and is always there for me.  I'm thankful that people are so willing to share their hearts, encourage and pray!  What a blessing to be a part of the body of believers. 

It's late as I've just done Joshua's blood check (good) and need to head to bed as morning always comes sooner than I'd like. 

With love
Leslie

Weary

That is how I'm feeling today.  Weary and sad.  It is nothing big or terribly wrong - I think it all just hit me today.  I'm just ready for some of the hard things to take a break for awhile.  Maybe more realistically, I just need more of His strength and less of my own effort.   

We had planned on going to our first field trip today - a park outing at a really great local park with our friends.  During the night, Isaiah threw up.  He felt better by the morning, though I'm not comfortable taking the kids out unless they have been well for at least 24 hours.  Christopher had agreed to stay with him while the rest of us went to the park.  This made Isaiah very sad.  Eliana at this time is cranky and just not herself.  Can you see where this is going?  Yes, she got sick too.  Not a lot - and just one time.  Thank you God!  She did remain cranky for a good part of the day though.

Well, that sealed it for all of us.  We stayed home.  We all really wanted to go, but will just have to look forward to the next outing. 

I got an extra hour of sleep last night, but was still feeling tired.  I'm finding it hard to get in good sleep with the times that Joshua needs to be checked.  I was hoping to take a nap.  Well, that wasn't to be either.  When I checked Joshua at 3pm, he was 56 and not feeling it.   (Yesterday at this time, he was a 44 and didn't feel it!  That is very low - his lowest yet!)  I had made an adjustment in his insulin at lunch, but think I'll adjust more tomorrow.  It's better for him to run high than this low.  (Yes, I did email his dr and have not heard back from her.)

This was a persistant low too.  We treated it and tested.  Still low.  Treated and tested again.  Better this time, but still not so high.  Gave strong protein/carb snack.  I don't even know how to explain how exhausting this disease can be.  It just NEVER gives you a break.  NEVER.  I hate that he will have to deal with this the rest of his life.

In the midst of life, I was just feeling sad.  Just weary and sad.  (Please don't worry Mom, I'm going to be alright!)  Like I said, it was nothing huge today, just feeling like some of it was catching up with me.  I would love prayers to find peace, balance and perspective - to see God's path clearly - to see God clearly.  I ran a brief errand tonight and it was a good time to listen to praise music and just cry a few tears.  (I was stuck in traffic for about 15 minutes in a construction area.) 

I know that God is still in control.  I know that He loves me/us.  I know that He is good even when life stinks and not just when life is good and rosy.  I know that He has spent a lot of time the last 3 years carrying me.  I'm thankful for Him.

I know He has promised to take my burden.  The last 3 years have just dumped medical issues on our family - on top of way tooo many sickness this summer and also right after Eliana was born!

I've written and rewritten some of the next part.  Here are some of the things we are dealing with or have dealt with in the past. 

Me - osteo arthritis - diagnosed just before pregnant with Eliana.  Dr told me it was a result of the severe Hyperemesis Gravidarum I had experienced in my pregnancies.  (Extreme vomitting, hospitalizations, IVs, drugs, etc.)  Some pain, loss of motion and my hands/joints are physically changing.  :-(  None of it is too bad now most of the time.  If anyone has suggestions on how to treat this, I would love to hear them.  My dr told me that there was nothing I could do.

Eliana - Down syndrome, feeding issues (NG tube and G tube), heart defect (repaired!), being watched for vision issues, has 5 therapies per week.

Other children (in case they don't want it all spelled out):

*Sensory Processing disorder.  Therapy once per week.  Feeding issues which have improved along with other things. 

*Vision issues - all of my children are being followed.  Five wear glasses.  Eliana does not.  Neither Roger or I wear glasses. 

*Colorblind - 3 of my boys.

*Learning disability of some sort.  In process of testing and hope to have answers soon.

*Juvenile diabetes.  Kidney problems - possible surgery, waiting for further testing.  Urology problems - probably surgery, waiting for specialist. 

After typing this, I realize that I may sound like I'm complaining.  I don't mean to be.  Maybe I should just delete. 

I'm so very thankful that we live where we do and have access to wonderful medical care.  I never knew we would have need of such a variety of specialists.  I'm truly thankful.  I'm thankful for each of these precious children!  God has blessed us richly and I am so thankful to be a Mom to each one of them.  My life is richer because of each one of them and even though the trials have been hard, I've learned a lot.  God has been good to us. 

"Come to Me, all who are weary and heavy-laden, and I will give you rest."  Matthew 11:28

Blessings

Leslie

First Conversation

While I was talking with Eliana this week-end, a milestone occured.  It was a small one in that you could have missed it.  It was a big one though and I was thrilled to experrience it.

Eliana is delayed in her speech and language (as is typical for children with Down syndrome).  She is working hard though.  These are some of the things we are working on in this area:

*Making new sounds - usually be imitation

*Repeating sounds or words

*Learning more about what words represent so that she has greater understanding.

*Answering questions -  She will typically shrug her hands when asked a question (as in "I don't know" or just look at you). 

*Learning and using signs - She has quite a good vocabulary of signs and it is growing all the time.  She is often trying to say the word while also signing. 

Much of Eliana's speech is repeating what someone else has said.  We are trying to work on questions and getting her to answers - specifically "I want".  Or "what do you want?"  This works really well with food (can you believe it?!) as she has shown a huge interest in food as of late.

On to the conversation.  I was getting the bathtub ready for our friends to use this week -end.  Eliana had followed me into the room.  When I had finished getting things ready I started to leave the room.  I asked Eliana to come with me.  She said "no".  I was stunned!  She expressed herself using language!!!  (I know, it sounds like her first response was pretty sassy, but I was happy to hear it).  And there is more!  In an effort to entice her out, I asked her if she wanted to go get something to eat.  Her answer to me was "bath" (sign and word).  That's it.  A very small conversation, but still thrilling!

Thanks for enjoying it with me. 

Blessings
Leslie