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

Something that made me laugh!

I walked into the kitchen the other day to find this.



Eliana had been eating a bowl of cantaloupe and had evidently gotten to the juice at the bottom of the bowl.  Not wanting to waste a good thing, she decided to drink it up!

This made me laugh because it brought back memories of when I was a child.  I remember my mom walking in to find my sister and I drinking the milk from our cereal bowl - copying our Daddy.  LOL  Not much you can do about that one.  I'm not sure if Eliana has been copying anyone (she sure could be) or if she just figured this out on her own.

She was definitely pleased with herself though. 



Have a great day!

Blessings
Leslie

A little bit on our week-end

We've been busy since I last posted.  Here's a little of what has been going on here.

Testing - We've started testing for learning issues.  We spent 2 hours on Friday and will have part 2 this next week.  It will be several weeks before we have any answers or information.  She did tell me that he was very smart and very fidgety.  Neither of those things surprised me.  He seemed to enjoy the testing time which was nice - and will certainly make it easier to return.  There is definitely "something there" and while I have my suspicions, we'll hopefully have clear answers soon.

Joshua - He has been experiencing lows again.  Typically these come in the afternoons.  I've tried correcting for them, but have not been fully successful yet.  Sometimes he can feel them coming and other times we just catch it with frequent testing.  The fluctuating numbers are just odd to me sometimes.  Just tonight about an hour and a half after dinner he was feeling low (98).  I was out running an errand and he checked his own blood glucose (getting everything ready) and even wrote in the log book I keep.  I was surprised to see that when I returned.  He was very proud of himself - and I am too!  We have no news yet on the follow-up appointments.  I need to call in the morning to see when we can get them scheduled.

Visitors - We had company over the week-end.  My sweet friend Hollie and her family came to visit.  One of my children has been teasing me about the "family friends that nobody but you knows" that are coming to visit.  Well, it didn't take long for everyone to hit it off!!!

Within minutes of arriving, the children were all running around the house.  We soon found out that they were planning a play.  They made up a playbill with the list of actors and even the scenes.  They found props and had make-up done (beards and mustaches for the boys).  It was quite fun to see them involved in such a big project so quickly!



The kids had a blast and got along so well!  It was fun for us to see. 



Hollie and I had fun catching up, sharing resources, encouraging each other and exchanging things.  She brought me a box full of science activity bags among other things.  What a fun treat!  We have just started using these and Isaiah in particular is very excited to see these appear in his workboxes for the day. 



It was just so nice to spend some time together in person!  It just is so much nicer than over the phone or by email.  My children are already asking when we can go visit them.  :-)

A shot of some of the kids - we had a lot of testosterone in our house this week-end!



I kept trying to get a picture of our youngest two together.  It was hard to get them still and in one place.  This is the best of the photos.



Thank you dear friends for coming to see us!  We loved having you here and hope we can do it again sometime soon!

Love
Leslie

More Testing

I feel like I've typed that before - "more testing".  I know I've typed "small prayer request" - so I didn't even go that route this time.  Joshua had a nephrology appointment today as a follow up from his testing last month.  I wasn't worried as I thought this would just be news that all is fine.  (The problem being followed - Hematuria - has some familial history with no problems.)  I wasn't prepared.  Thankfully God was.  He knew our steps, the words we would hear and He was right there with us.

We saw a very nice doctor that spent time going over history, asking questions and finding the reports from the other testing.  She came back and told us that based on what she saw on the report, she thinks that there may be a problem with one of his kidneys.  She drew a picture to help explain how the kidneys are supposed to function and what she is suspecting may be going on with Joshua.  The next step will be another renal ultrasound, but this time with dyes in order to see exactly how the kidney is functioning.  If the problem is there, it will need to be surgically corrected. 

Hopefully we'll hear from them tomorrow in terms of scheduling an appointment.

The second piece of the puzzle today came after a physical exam.  She noted a problem (I'm going to be discreet here and not go into detail though I don't mind sharing this personally - just not over the internet).  She called in the supervising doctor who concurred with her opinion.  This finding is a problem and Joshua is being referred to a urologist.  We are expecting surgery to correct it.  I was stunned to hear this and tried hard to fight tears so as not to upset Joshua.  This is always a balance isn't it?  Finding the strength to be strong for your children and yet letting them know that you are scared and sad too.

This second problem is not a result of diabetes.  It has been uncovered because of it though.  I'm thankful that this has been uncovered.  I do wish it weren't happening though.  I feel like my sweet boy is really being put through the ringer this summer.

Joshua is prone to more problems with his kidneys because of having diabetes and thus he will continued to be followed and monitored in this area.

Earlier this week, as a journal writing activity, Joshua had to answer the question, "Do you think you are lucky?".  I wondered how the events of the summer might have affected his answer.  I was curious to see.  He answered a firm "yes" and then listed why he was lucky - family, friends, clothes, a house, etc.  He even said that he thinks he might sometimes take these for granted.  I love his heart and that he sees the blessings of his life clearly.  In spite of what happens, we are very blessed.

So, we wait to hear back about appointments and then will find out more details then.  We appreciate prayers for clear results and patience as we wait. 

One other piece of testing is for another son.  I have suspected for awhile that he might have some learning disabilitiies.  I would love to be wrong on this!!!  We are starting testing with him tomorrow.  Would you join us in praying for clear and accurate results and wisdom in knowing how to deal with any information we may get?

In the midst of difficulties, I still know that we are very blessed.  I'm thankful for a strong God that sustains me - even though I am weak; His wisdom that covers me even when I'm confused; His loves that pours over me even when I feel unlovely and undeserving. 

Some days I feel like there is so much drama going on over here and that surely at some point, things will settle down.  I'm not sure what God's plans are in all of this.  I do know that He loves each one of us and does have a plan for our lives.  I know that He is good even when are circumstances are not.  I know that He is faithful and His promises true even when my life feels so out of control. 

I'm comforted by remembering the words to a child's song ... "Jesus loves me this I know".  Know that He loves you too.  Thank you for praying for our family.

WIth love
Leslie

Birthday Blessings

I had a sweet birthday at home with my family (earlier this month).  They treat me like a queen - special seat at the table, flowers, hand-made cards and no cooking for the whole day!

Breakfast:



Lunch - even served on the red plate. 




We skipped dinner and a birthday cake since we were seeing some VERY high numbers in Joshua.  I just didn't want to have to deal with something that would be hard for all of us.  We had a nice dinner the following night (which I didn't get a picture of), but it was delicious! 

 Here are some of my birthday gifts.  Chocolate from Daniel and Isaiah and they each picked out something that they knew that I loved.  Joshua gave me an armband to carry an Ipod.  Rebecca gave me a gift card to Kohls.  We went shopping the following day and I was able to buy several new things with it!  Christopher and  Roger gave me an ipod - pink!  I've been wanting one and it was a nice surprise.  Christopher has spent hours loading songs and stories and speakers CDs (that I bought at the homeschool conference) on it for me! 

Each of these gifts was so very thoughtful and reflected something of the person that gave it to me.  I'm so blessed to have such a wonderful family!



 Joshua made a new screen saver for me too.



I also received cards and gifts from friends and family.  Thank you!  I had a sweet birthday hanging out with my wonderful family.  I'm blessed!

Love
Leslie