Friday, August 28, 2009

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

Thursday, August 27, 2009


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



Wednesday, August 26, 2009

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. 


Tuesday, August 25, 2009

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!


Monday, August 24, 2009

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!


Thursday, August 20, 2009

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

Wednesday, August 19, 2009

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!


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!


Tuesday, August 18, 2009

He did it!

I'm  proud of one of my little men today.  He wanted to try something new.  Face a fear and tackle it.  He asked if he could do it.  I agreed.  With trembling hands, he prepared.  He hesitated, wondering if he could go through with it.  He tried and nothing happened.  He looked at me quizzically and I told him to try again with more pressure this time.  And then, he did it.

Joshua tested himself for the first time today (and then again several more times today).  He was so proud of himself.  It was sweet to see that look of pride in his glowing eyes when he was able to do it.  I'm proud of him too.  I remember how scared I was the first time I had to poke him - and it wasn't even my finger. 

The only downside to his first testing.  He was low.  He hadn't felt it and it surprised us both.  Thankfully, he came up pretty well after a juice box and then a snack after another recheck. 

In other Joshua news, he was stung by a bee yesterday in the late afteroon.  We were going on a treasure hunt out in the yard when it happened.  He screamed from the pain as he was stung on the tip of his nose.  We went inside and I followed the steps in my home remedies book to treat him.  Thankfully, he had none of the bad symptoms.  He did however have pain and swelling

I was surprised when I saw him this morning to note that his nose was still swollen and red.  It looked more swollen, but I wasn't sure.  He still had no other danger signs, but still I wondered. 

I called the nurse at our ped's office to talk with her about it.  Is it different since he has diabetes?  The answer I didn't want to hear was "yes".  Since he has diabetes, he is more prone to infection.  So, while he did not have an allergic reaction to the sting, he does have to be watched to help prevent infection. 

Thankfully, he does not seem to be in pain.  His nose is still swollen and the sting site has a slight discharge at times.  I'm hoping that by morning it will look much better.  Praying for a quick healing with no complications.  I wish it had gotten me instead of him!

Otherwise, we are all healthy and staying busy.  More tomorrow.


Monday, August 17, 2009

Artisan Bread in 5 Minutes a Day

Have you heard about this book?  Artisan Bread in 5 Minutes a Day.  One of Eliana's therapists told me about this book and gave me a copy of an article about this bread.  It really helped when a friend of mine, Jessica, showed me how she made it.  I bought the supplies - a large container to keep the dough in (it goes in the frig and can stay there for up to two weeks) and a thermometer and a pizza peel (for sliding the bread dough into the heated oven).

I had these things sitting around ... for months.  A good idea, but just not enough time to get to it.  Well, one day I decided to just give it a try.  I didn't read the directions carefully though and messed up the first batch of dough.  (Didn't let it sit out at room temp for a couple of hours before baking.)  I decided to give it a try anyway - and it worked. 

This bread is delicious!!!  Looks just like something you would buy from a store - firm crust, moist inside.  Did I mention that it is yummy!!!

Here is the author's website if you want more ideas on breads and like to look at pictures.  Don't go hungry.  ;-)   I love the photos and am hoping to buy the book with some birthday money.  We all enjoy bread at our house and it's been fun to experiment with this new (to us) bread.




Sunday, August 16, 2009

Playing catch-up with photos

I'm going to try to upload photos and post them over the course of the week and hopefully be "caught up".  Well, as best as I can be at this point.

Eliana has started music therapy.  We have had a lot of juggling to do to get this going.  She was supposed to start the week Joshua ended up in the hospital.  Then with the sickness getting passed around we missed some weeks in July too.  Hopefully now we'll be more regular in our time.

Eliana loves music!  She likes to dance, listen and to play instruments.  I'm so glad that she has this time and that our case manager suggested it for us! 

She is learning different concepts and skills and I'm finding ways to incorporate this into our daily lives.  I'm learning new things that I need to be teaching her because she is ready to learn.  I think it is going to be a great help for us!  The cabasa (below) is one of her favorite instruments!

Joshua and Christopher are playing football and practicing twice per week now.  It is going well and they are both enjoying their time.  They are in a great league with which we have had great experiences in the past.

Isaiah lost that other tooth.  I love the look of no front teeth on little kids and think it is really cute!

My sweet friend Catherine came for a visit so we could have some "girl's time".  We had fun and even got in some scrapbooking.  I'm thankful we can visit, but sure wish they still lived right next door!

 This is brief, but just a peek into a few more things going on in our days.  I hope your day is filled with God's blessings!

With love

Saturday, August 15, 2009

Some facts on Type 1 Diabetes

for those who are wanting to know a little more.  I found the comments by the children at the end to be sad, but true. 

Facts on Type 1

I am thankful that in the midst of dealing with this disease that we do have a hope.  We know Who made us and for what purpose.  I am thankful that God can use this for good in our lives and I trust that He will.  I am thankful that our circumstances do not change the hope we have in HIm!

Hope you are having a great week -end!


Tuesday, August 11, 2009

Life is ... busy!

I'm feeling swamped and trying to stay on top of things.  Actually, things are going pretty well, but my free time for blogging has suffered as I've tried to organize and get on top of other things.  (I actually loaded a lot of photos tonight so hopefully I'll get to that later this week.)  I'm working through my emails (slowly) and trying to tackle other projects.  (If you have asked for the form I made for Eliana, I haven't forgotten and will get to that soon.) 

Headed to sleep soon, but wanted to share a little something cute. 

Christopher is working out and often doing push-ups.  Eliana loves it when he does as she thinks it means it is time for a ride! 

Hope this brings a smile to your face.  It always makes me chuckle.

Praying God's blessings on your day!


Wednesday, August 5, 2009

Health Update

Thank you for your prayers.  Things are much better here today!  Health is such a sweet blessing and one we have learned not to take for granted over the last several years. 

Eliana was finally able to eat something last night about 7pm.  She spent a lot of the rest of the night with painful diarrhea though.  She had a long night's sleep - about 12 hours.  She woke up feeling much better.  She was ready to eat this morning.  I gave her some Kix cereal to hold her until I could get some oatmeal ready.

An unexpected sweet moment came during this time.  When Eliana finished what was in her bowl, she began to protest.  I looked at her and then she said and signed "more".  I asked her to say please which she did.  I was happy to comply with her request.  We did this multiple times with her learning to say "more" first instead of just fussing.  She began to add please a little more quickly too.

Having her initiate speech is a wonderful thing!  It's something most children do and we can just take it for granted.  Each little mileston with Eliana though seems something to be celebrated.  If we can get her to move to two word sentences, that too would be a great milestone.  Something small, and yet big too.  It is just so sweet to hear her little voice telling me what she wants.  It is so nice to have her communicating! 

She has had a good day.  Playing, eating, no sickness.  What could be better?!

We tried to do a school day and had a pretty productive one.  At the moment, my oldest children are cooking dinner as part of their geography course.  We are having a meal from Maine.  It looks yummy. 

Earlier today I did something I should have done in a more planned fashion long ago.  A few days ago I began making a list of specific games, toys and activities that could be used to help Eliana with certain skill groups.  I tried to think of things in a variety of areas - speech, oral motor, gross motor, fine motor.  I also just tried to think of toys that we have and how they can be used in a productive manner.  I made a grid (2 pages) of these skills and printed it out.  I'm planning on having a teaching time with everyone in the family so that when they are playing with Eliana it can be done in a way that really benefits her.  We all play with her so there is no reason we can't learn to adapt our play a little bit so that she is learning while playing.  I'm hoping this will help me to stay on top of her learning too.  I can post more about this if anyone is interested.

The rest of the family is feeling fine.  Joshua had no relapse after being sick on Monday.  I emailed his numbers to his doctor last night and she said that everything looks great.  He typically has a spike at lunch time because we are giving snacks without a dose of insulin.  She said this was all still fine.  If/when he moves to a pump, he will correct it then.  For now, we are both (dr and I) comfortable with his regimen and not wanting to add another 3 shots a day for snacks.  That just seems like too much!

More later.  Still have things I want to do in a catch-up post like our trip to the beach.  We spent a wonderful week at the beach with my family just prior to Joshua's diagnosis.  I have some great photos to share.  It may be the week-end as most of my spare time now is in planning and schooling. 

We are thankful for our healthy bodies.  Thankful for good food to put in them.  Thankful for friends and family who are praying with us.  Thankful for a wonderful and good God.



Tuesday, August 4, 2009

Quick update - Tue night

Thank you friends for praying and for your hugs too!

She had a good long nap and has woken up ... cranky. (Which is very much out of character for her) She has been able to keep down some water, but not interested in food at all and I'm not pushing it. I'm just really not sure what to do to help her.

Sorry this is short. Just wanted to update.



Eliana's turn - small request for prayer

Maybe this helps to confirm that Joshua's sickness yesterday was a virus of some sort.  That is good news in some ways, though I sure wish it hadn't been Eliana's job to be the messenger.

Eliana is throwing up. I thought it was just sinus drainage, because she woke up at 6am very stuffy and clearly dealing with internal drainage.  I began to doubt the drainage theory when it happened a second time. Now that we are up to 8 or 9 ore more, it is something else. She is miserable. I'm holding her. She's tired, but not able to sleep as she keeps getting sick.

Just interupted. She is keeping nothing down. Not even water.   I've spent the morning doing LOTS of laundry, changing clothes (both of us), giving a bath and well, doing clean-up.  So much for our first week of school,huh?  Actually the children have been doing school and helping out.  They have been great!

As I was thinking about this post while changing clothes, I remembered one of my last "small request" posts. It was for Joshua on the day he was diagnosed with diabetes. It just hit me and made me cry. The grief process can just hit out of nowhere sometimes, kwim? I'm not thinking this is like that. Not sure at what point this sickness becomes more than I need to try to handle at home though.

THanks for praying.

Monday, August 3, 2009

Quick update on things here

Over the last couple of days we have started to see Joshua having some lower numbers (80s and 90s).  Not technically "low", but pretty close.  His goal is to be closer to 200.

This morning, we planned to start our first day of school.  The kids got new school things last night and we had planned to go out to eat this morning as per our family tradition.  We got up and were getting going with our day when Joshua says that his stomach hurts.  I take him upstairs and so he can lay down and rest.  The pain gets worse for him and within half an hour, he is sick.  Again.  :-(  He threw up several (3) times and then fell asleep for a couple of hours. 

He seemed to feel much better after sleeping.  He stayed up in the bedroom for the rest of the day though without complaining.  I know he did some good reading and a little bit of math. 

The rest of the kids started school and had a productive (albeit slow) day.  More on all of that later. 

Please pray for health for Joshua.  He told me his stomach hurt again at bedtime.  I hope we are going to see this as a trend.  Planning to email his doctor later tonight - and then hopefully head to bed soon.