Monday, July 27, 2009
One of the supports we have is from the Juvenile Diabetes Research Foundation We received information about them while we were in the hospital. I had not yet initiated contact though when I received a call from our new case manager at our insurance company. I'll admit, when I first heard it was someone from insurance, I was fearful of hearing that we were being denied services or coverage. The gal I spoke with was nice - and knowledgable about diabetes! It was very refreshing. She talked with me about the things I needed to do - and then followed up with an email listing websites for various services. Really nice!
She followed up our phone call the next week to ask if I'd talked with anyone from JDRF. I hadn't. Well, she called them and spoke with someone who then called me! This gal from BCBS (insurance) is on the ball! I spoke with another mom that helped to answer questions and talked with me about the mentor program. They will match us up with another family with a boy similar in age to Joshua. That will be nice. I know he will enjoy meeting another boy that also has diabetes.
I sent in a form to JDRF that we received in the hospital. As a result of that, Joshua received a really nice surprise in the mail! It is the JDRF Bag of Hope.
A backpack filled with things. The backpack even has a cooler compartment in the back that he could use to carry his meds (or a cheese stick which is what he likes putting in the cooler when we go out). The backpack has the JDRF logo on it.
Here are some of the goodies inside.
*Rufus the bear - who is wearing a medic alert bracelet. He has patches in the spots where you get pokes and shots.
*Story book about Rufus. The story is about a boy diagnosed with diabetes and his mom makes this bear "with diabetes" so that he has a friend that understands.
*Pink Panther First Book for Understanding Diabetes
*Cartoon book called CJ has diabetes. One of the facts from this book is "every hour someone finds out they have diabetes".
*DVD called "You Can't Catch Diabetes from a Friend"
*Coupon for a local science museum
*Carb counting book
*OmniPod Demo Kit - a pump so Joshua can see what it is like.
*LOTS of pamphlets and brochures on carb counting, wearing a pump, advocacy, research, hypoglycemia chart, JDRF magazine, diet and portion control and more!
This is incredibly nice. I know it helps to have the information and even in reading the books to know that the emotions are all things others have felt too. I have to say, that I cry reading these books still. There are times when I just can't believe he has diabetes. There are still times when it is hard for him. I hang out with him most nights until he goes to sleep as night is typically the hardest time of day.
Today has been a challenge today because Joshua woke up feeling badly - and soon got sick. Again. He ended up being sick in the morning and then slept most of the afternoon (and also had a short nap in the morning too!). After lots of sleep, he felt much better. Was able to eat dinner. Then after dinner, Christopher got sick. *sigh* Surely this will all be gone soon. I'm really hoping it doesn't make the complete rounds. Praying for wellness and for it to be short-lived sickness.
Sorry my posting is so sporadic these days. I'm trying to catch up on my records for Chrisopher's past year. (Yes, behind) Trying to plan for the upcoming year. Working on getting things started with our FIAR support group. Planning our field trips is the biggest item there. Juggling therapies - we are up to 6 per week now. Trying to implement a budget. Working on chore charts. Oh, and learning to count carbs, measure carefully all the ingredients in dishes and what is served and just in general diabetes care. I know we all have full plates. Some days mine seems to be running off the sides. In it all though, life is good. I'm richly blessed and thankful for much!
Friday, July 24, 2009
Eliana is having some drainage issues which are bothering her, but it isn't sickness, maybe allergies? Not really sure how to help her. The drainage is all inside not out. I can write more but not sure any one wants the yucky details. lol
Joshua's numbers are still fluctuating a lot. Today has been one of the hardest. He went from 295 to 96 in less than 2 hours. Needless to say, he didn't feel too well. Hopefully we have it corrected and since it wasn't technically a low, it isn't as scary or dangerous for him. I know that all the fluctuating though isn't great for his body either. No news yet on the nephrology referral.
More to share later. Thank you for your prayers. Hoping to have some down time this week-end. My sweet friend Catherine is coming to visit so we can have girl time. :-) I'm looking forward to it!
candles - and a little one trying hard to blow them all out
cake - especially that one for the first birthday smeared all over your face
party - a time to share with family and friends
gifts - a squeal of delight to know you have been given something undeserved
attention - for a day anyway, the focus is on you. Who doesn't enjoy a little positive attention.
so many sweet memories of birthdays ...
My birthday is coming up soon (next month), but that isn't why I'm thinking about birthdays now. Also coming up is the birthday of a little girl that I have grown to love. I didn't intend to fall in love with her. I've never met her and I know very little about her. I've prayed for her faithfully for almost a year though and in that year, I've fallen in love with a little girl living across an ocean and far away. A little girl called Tonya.
I started off just wanting to make a difference in the life of another child with Down syndrome. God has called us to care for orphans and one way our family has done this is to sponsor children in lieu of gift giving at Christmas. Last fall, as we looked over the listing of children, we chose a child that seemed to be in great need. She was 3 years old and her listing said she was at significant risk and needed to be adopted soon. I began to pray. I didn't know that the power of prayer would lead to more than just concern or sympathy, but love for this child I don't know.
She has beautiful dark eyes. I wonder if she has even seen a candle or a birthday cake. She has such cute chubbie cheeks. Does anyone ever kiss them? I wonder so many things. Is she loved? Does she like to laugh? Does she have much to laugh about? Does she like to play outside? Has she ever been given a gift? Will she ever know the love of a family?
I can't tell you how many times I've cried as I pray for sweet little Tonya. I pray, urge, and yes, beg for God to send her family to go get her. I pray that she will be safe and kept in the baby house (orphanage) until a family can bring her home.
Why the tears? Well, beside the obvious of her needing a family, is the fate of this precious child if she doesn't get a family. At age 4, she can be transferred to an institution. Here, she will most likely die within the first year. I've been told that death is a blessing as some of these places are just horrible. I can't type more as I'm crying now just thinking about it.
Sweet Tonya's birthday is next week. She will be four. Will you join me in storming the gates of heaven for this precious child? I so want for her to have a family to love her, to sing happy birthday and to give her the life that every child deserves.
It's not just this sweet child. There are thousands more all over the world that need someone to step forward and bring them home. Please pray for these children. Please pray about what you can do to help one of these beautiful children. We can't change the world, but perhaps we can change the world for one child.
Monday, July 20, 2009
Isaiah lost a tooth. It's been bothering him (didn't think he could eat certain foods with it being looose). I was glad to see it come out. The one beside it is also loose and should come out soon too. I love the look of no front teeth! So cute.
A funny story on this loose tooth. While it was loose, he really didn't like things touching including food and the toothbrush. One night when Roger was brushing his teeth, Isaiah pointed to the loose tooth and said that this tooth didn't need to be brushed because he didn't use it anyway. LOL He cracks me up!
We've redeemed a few coupons from the children's coupon books. Isaiah chose to cook with Mommy. He was able to pick what he wanted to cook and he chose pizza! A hit all the way around. He did such a good job with all of it!
Here is one of the finished pizza - doesn't it look yummy?! (It was!)
Just had to share a picture of this cutie all ready for the 4th of July!
As a special treat, Rebecca made us a festive and patriotic looking dessert. It was yummy too! I love that she initiates cooking treats for us!
This is not the best picture, but it is the best one I have. Eliana fed herself lunch! Mac and cheese! She did it all herself. :-) What a sweet thing to watch her using her little fork and feeding herself. I realize that this may not seem like a huge milestone, but it was a very sweet one for all of us. She has been a little resistant to feeding herself and honestly sometimes it is just easier for one of us to help her. I'm so proud of her for doing this and she seemed to enjoy it too!
Rebecca attended another drama camp. This time the production was Get Smart. Remember the old tv series? It was very funny and the kids had a blast putting it on. Rebecca was a "blond" - that wasn't. LOL She is on the right in brown.
This is the cast.
We all enjoyed the play - it was very funny and they did a super job! Wish you all could have been there. Afterwards there was a snack reception which provided one of those tough moments for Joshua. We had planned ahead and brought snacks that we knew he could eat. Well, of course he wanted to have some of what everyone else was having. I can understand that.
He had 2 oreos and then some of what we brought. I thought it was a good compromise. He was bummed not to have a drink (even though we'd brought something for him). I think it is just some of the loss he is dealing with. I hope I don't make him sound like a whiner for the way he is acting because he really isn't. It is a loss. A loss of freedom to be able to eat what you want and when you want it. It's a freedom that most of us take for granted. I know I have. I don't have to eat on a schedule and only certain types or amounts of foods. I've tried to encourage him that it will get better as we are better able to regulate his numbers and going to a pump sometime in the future would help too.
Just a little of what is going on here. I remain behind and have just accepted that perhaps that is to be life now and I'll just enjoy it where I am and do the best that I can each day. I know God has a plan for me, for my days and for my time. I'm trying to follow His lead as best I can.
Thursday, July 16, 2009
We left early and got to the hospital in time to park, walk across the bridge and check in. They are very punctual (which is really nice!) and we were called as we were checking in. Everyone we met was very nice and helpful! Great staff!
First a check of the basics - height, weight, temp, etc. Then to the room. We spent most of the time with the Nurse Practiioner and a resident. She talked with us about some of the information that we had covered before - but it was a good review. It was soooo much to take in at first and I find I hear new things each time.
His blood results showed that his A1C number had dropped to 12.1! This is good news! A good drop I think in just three weeks time. He was 15 just three weeks ago. Normal is 5-7. This number looks at the rate of blood sugars over the last 3 months. His now indicate an average of 345. Still too high (obviously), but moving in the right direction!
Some other results. There is still blood in his urine and he is being referred to a nephrologist to further explore. The good news is that we've already had a renal ultrasound and CT scan which show no causes for the problem. The other piece of (hopefully) good news is that there is some familial history of this and hopefully it will just be something that *is* that doesn't have a problem behind it.
His weight is of concern. Have I mentioned that he is really skinny? Even though he is a good eater? He is at the 5th percentile for weight. :-( He eats well and snacks often. Not really sure how to boost his weight and am hoping that will come in time.
We also spoke with a nutritionist. Our goal is for Joshua to eat 14 carb choices (15grams of carbs per choice) each day. That is about 4 per meal and 1 per snack. I should have asked about getting more calories in without the carbs. That is not easy! She also said we don't need a scale - though I'm still interested in one as I think it would help a lot with fruits and veggies. Right now it is really a guess.
We also had another medicine change. We are off of regular and now on Novolog and Lantus. She is hoping that this will just cover meals and not "stack" the insulin in the evenings when he has two shots. So far, we are seeing much higher numbers. While it is good not to have the lows, I'm not sure I really like the highs either. He was feeling funny after going to bed and we checked at 11:20pm and it was 332. That is really high. I've emailed his dr and I'm sure she'll get back to me if we are to correct the dosage.
We are supposedly in the honeymoon. I was hoping we wouldn't see these high numbers and that there might be a reprieve from some of the insulin shots for awhile. That would be nice. We are currently at 4 shots per day. Pokes vary - some days have more than others. Today it was 7.
Other news - we are all healthy!!! Yippee!!! No sickness since Saturday. :-) We have more going on and I'll post more later. Eliana started music therapy today and it was a big hit. Rebecca is in a drama camp this week. We are looking forward to seeing the production.
More later. It's time for sleep.
Tuesday, July 14, 2009
This is going to be short as Joshua and I are headed to Diabetes Clinic today for several hours. I'll update more on this later.
Last night was another hard night for Joshua. It's so hard to see your little boys body just racked with sobs. No words necessary. I knew. I just held him and prayed. I praised God knowing that focusing our minds on praise is a good thing. Then I just prayed God's truth over him. He is loved so very much. God is carrying him and will continue to do so. We prayed for a long time.
Afterwards we talked. And laughed. Not about what was troubling him, but just stuff. It is still a lot for a little boy.
"Will I ever be able to eat what I want and when I want it?"
Yes, but we'll need to figure out how this works for your body. Still a lot to learn. I'm hopeful that today will help a lot with questions we have and information we need.
Thank you for praying for our family.
Saturday, July 11, 2009
Thank you friends for your prayers and encouragment. Thank you for your sweet comments and your help for my family.
I'll try to write more later. Today, I want to have fun with my kids and maybe even do a little school planning or scrapbooking. :-) We'll see.
Hope you have a great Saturday!
****UPDATE**** I guess I spoke too soon. Joshua is sick again. (Not throwing up) Wondering if some of this is related to his diabetes? Diet? Still the virus/sickness? *sigh*
We had planned an outing today to go see a movie. Joshua was very excited about going. He and a brother or two were going to see a movie they had picked out. We felt the timing was good and safe. Just as we were talking about details, he got sick again. He wondered if he could still go. He was so dejected when I said no. This has just been a hard couple of weeks for him. Going to try to find something fun for him. Thanks for praying!
Friday, July 10, 2009
I first saw this photo tag on my friend Heather's blog . I thought it would be a fun thing to do.
If you want to do it this is what you should do:
1. Go to Your Pictures on your computer
2. Go to the 8th folder
3. Go to the 8th picture
4. Post that picture on your blog and the story behind it
The 8th folder for me was just in December and this is a photo I've already shared, but here goes. This is Daniel with his ornament. We give the children an ornament each Christmas - my mom did this for us and I love the tradition. I try to choose something that either reminds me of the child, their character or something that they have enjoyed or experienced that year.
Daniel's ornament is a little drummer boy - made of candy. Daniel loves candy! It reminds me of his sweetness. This little drummer plays music and beats his sticks in time to the rhythm. He loves this and played with it over and over again.
Can't you just see the delight in his cute little face? I love this picture of him.
If you decide to post a pic to do this tag- I'd love to hear about it.
Wednesday, July 8, 2009
When Joshua wanted me to come up with him to sleep, I could tell something was on his mind. He told me his head hurt. Then he just started to cry.
"I don't want to have diabetes."
"I want to go back to the way it was before."
"I don't want to have so many shots every day."
"I want to be able to eat whatI want and when I am hungry and not on a schedule."
Does imagining hearing a little 9yo boy say all of this tug at your heart? It's a lot for a little boy to handle. To add to all of this that he has been sick for 11 days, well, it's no wonder his heart was heavy. I know it could be worse. It still doesn't make this easy though.
I just held him and cried with him. I don't want him to have diabetes either. If I could take it instead of him, I would in a heartbeat. I know it's hard. It's alright to cry. I told him all of that and then just prayed. I asked God to heal his body. I asked him to pour His peace on Joshua. I asked Him to carry my sweet boy.
Yet, as I did all of this and was praying myself for words to comfort, words to help. I felt so inadequate. I remember so well feeling all of these same emotions after Eliana was born. I remember people telling me that I would find a new normal and that things would get better. Even though true, it didn't always make me feel better then.
I had to find the truth for myself. I had to learn that God is good and faithful even when times are hard. I had to learn that I needed God so very much just to have the strength to make it through the day. I had to learn how weak that I was so that God's strength would show. I had so much to learn and God was so faithful to teach me. So many of those things people told me ended up being true, but I had to learn it for myself. I learned about priorities and what was really important. I learned about suffering and lots of medical stuff that I never wanted to know. I learned about God's faithfulness and love. I had to live it to learn it though.
I so wish that Joshua didn't have to go through all of this. Nobody wants their child to suffer, to have to deal with a medical issue that will always follow them. He can't forget about it for even a day - or even a couple of hours. There is always that next poke and shot waiting.
I do know that God is faithful and will be there for Joshua. I know that God will hold him and teach him and that He loves him so very much. I know that Joshua will become a stronger young man for having to deal with this. I still wish he didn't have to do it. I wish he could have had more of his childhood to just be a child - carefree and without the burden of diabetes. Again, I know it could be worse, but this is still a lot to handle.
I tried to share a little of this and told him that I wasn't sure if would help at all. Parenting can be so hard sometimes (though I wouldn't trade it for any other job in the world!). I just wanted to be able to kiss him and make things better, but this is too big for that. It's going to take time ... and trusting ... and learning.
Thank you God for always being there for us. Thank you that you are faithful, true and loving. Please guide us as we learn to walk this path. Please strengthen us to the task that is before us. Please shape us to look more like you.
Thankfully everyone else is feeling well. The other kids and I just did a lot of reading and some cleaning. We are reading a really good book right now. It's entitled The Mysterious Benedict Society. It's a mystery involving children and a plot to change the world. I love that it is engaging for my children from 7 to 16! I'm really enjoying it too!
Joshua walked in and said he feels funny - his head and his stomach. Wants his blood sugar checked. He is really good about asking for this when he isn't feeling well. He, unfortunately, has had too much practice between the sickness and the many lows.
I had told him that he would be fine as he just had a snack recently and a shot of insulin. I don't mind checking though whenever he feels it is needed (or wanted). This is a lot for him to learn. Being attentive to his body and the changes it is going through. He is doing such a good job of it all too.
His blood sugars are fine, but he wants me to go up with him. More tomorrow.
Thank you for your prayers.
Tuesday, July 7, 2009
I took Joshua in this morning for his CT (CAT) Scan. They told us just to walk in. We went and waited for about 30 minutes. During this time, we realized that I had forgotten his "poker". I packed it, but forgot to slip it in my tote. Thankfully, we weren't far from home and we were in a medical facitilty. I did bring snacks so he was able to keep his blood sugars up. We read aloud in a book (Hatchet - thanks Laura!) and played some games.
When it was time to go in and he saw the machine, I could see that he was visibly scared. The technician that worked with us was wonderful!!! She explained everything and answered his questions (he always has questions). He happened to have on an outfit with no metal so that he didn't have to change into a gown. This was probably the only pair of shorts that would have worked like this too! She did a trial run of him laying on the bed, being lifted and then into the machine so he could see what it would be like.
The test itself went pretty quickly. Then I chatted with Joshua while she checked to make sure they had all the images that were needed. I had watched with her as the scan was going on and thought it was neat to see the images of his bones and thought Joshua would like that too.
I asked if she would mind him seeing that picture when it was completed. She did so much more than just show him that one neat picture. She scrolled through all the pictures and pointed out his organs, bones, spinal cord and more. When she got to his stomach she said it looked like he had eaten cereal for breakfast - and he had! She also showed him his muscles and his skin and commented that he had NO fat. This is true. :-)
As we were leaving, she told me that she would be sending the results to our ped office right away. She also said that if we hadn't heard anything by this afternoon, we could call and ask. Again, very nice!
We then went home. I forgot to mention we had one sick today - Daniel. Sick again in the middle of the night. Thankfully everyone else is feeling better. I sure hope it ends soon!
Our ped called this afternoon to share the results. His kidneys looked good - no obstructions or other problems. She did say that his left kidney is "puffy" in the collection area and is something that she will want to keep an eye on. She doesn't know what caused it, but it doesn't seem to be due to any problems in his body right now. His other organs looked good too! Also, one of the cultures came back - negative for E. coli. Thank you! She is still waiting on some other cultures. I told her that I knew it wasn't salmonella - that one was very wicked and much, much worse than this has been. It was horrible!
She mentioned that this might be rotavirus. She asked if I'd extended nursed my children and I said yes. She thought this probably protected them while they were young. Eliana had the shot for this and that may be why she hasn't gotten sick. We won't know for sure though as this one wasn't cultured - just the "big boys" as she said. I think it must be something we picked up from the hospital. Who knows. It doesn't really matter. I just hope it is done!
Joshua's numbers are doing good again today. No lows! The new med seems to be working well in helping to keep him balanced. I'm thankful for that. I also talked with his endo dr who called to check on him. Isn't that wonderful to have doctors that care so much to keep such close tabs on their patient?! I'm very thankful for these great doctors and their willingness to go above and beyond when it really is important.
I'm hoping that by tomorrow, I can post some pictures, maybe share some other things that have been going on. I"m hoping that we are at the end of the sickness path and then can just walk the new path of dealing with diabetes. I'm thankful for many things and appreciate your prayers.
Monday, July 6, 2009
Just wanted to update a little on our day. It seems silly sometimes to just post and post about our lives, though I know some people are reading and do appreciate your prayers. Your notes and comments have been sweet too. :-)
I took Joshua to the renal ultrasound appt today a little after noon. We took our bag with a game (thanks Rebecca as we have had a lot of fun with this!), puzzle book and more. Joshua worked on lunch on the there. I learned a lesson that I'm sure will be repeated. We are carb counting now and administer his insulin (one of them) based on the number of carbs he has eaten. Since he slept in late and hadn't had a shot yet, I wanted to be sure he got one at lunch.
I made a lunch, counted the carbs and figured he could take the food with him. Well, about 5 min down the road, I realized he didn't have about half of his food. So we turned around and went back. I weighed the cost of being late (they wanted us there 15 min early) versus what not having the food would do to his body. I choose the food. He could not afford another low. As it turned out, our timing worked out just fine too.
The ultrasound was long. I asked the sonographer if she would be interpreting the results and she said no, it would be a radiologist (dr) who would then talk with our ped. I sat at the end of the bed while Joshua had the test done. Up until that point, I realized that I had felt light about this appt. I really viewed it as just something to cross off the list, not really searching for a problem if that makes sense.
Well, as we were sitting there, I saw her go back to an area that she had already studied and measured. It was then that I felt fear seep into my mind and heart. I knew that she was looking at something, though I didn't know what. I knew not to ask as they can't tell you anyway. My mind started racing with things that could be wrong. I know that there is a link between diabetes and kidney problems, but surely not so soon.
I thought about how people sometimes comment that I am "strong". I don't always feel so strong. I think handling trials has made me realize how very weak that I am. I probably thought I was strong before I had been tested. Now, I know better. I think that being strong is sometimes just doing what you have to do. You do what you have to do for your children. That is part of being a parent. You don't always have a choice. I also know that my strength comes from God. I can't imagine doing any of this without Him. He is faithful and always with us.
So, I began to pray in that little dark room. Praying for our brave little boy who has been through a lot in the last two weeks. Praying for health. Praying for his body to be fine.
When the testing ended, she had us wait as she wanted to check with the dr to make sure she had gotten all the pictures that were needed. Then she asked us to wait for the dr. to come talk with us. I began to feel nervous again - thinking that this must mean bad news.
The doctor came out to talk with us. She had been unable to reach our ped and didn't want us to have to wait to hear the news. (That was very considerate!) She told us that his kidneys look healthy and that they did find one thing that wasn't normal. The collection area of his left kidney is too large. They aren't sure why. It could be that this is normal for him or it could be a sign of an obstruction. I left thinking that this was the end of it.
When we got home, we got in a poke and then a snack. Then I headed up to take a nap. I got in a short one before the phone rang. It was our ped. She talked more about the results of the test. She doesn't want to let it go in case there is something wrong. She wants another test (CT) done to see if there is an obstruction in his kidney. This is unrelated to his sickness and his diabetes. This is just another something going on in his body.
She told me that she was trying to find out if insurance would cover the test before getting it scheduled. She wants it done tomorrow. I'm guessing we'll get a phone call in the morning to set it up.
I also got a call from the endo wanting to know how Joshua was doing. We were both very pleased with his numbers today. Most in the 100s and one in the 200s. No lows!!! Yippee!!! This new med seems to be doing a better job. She again said what a great job we are doing taking care of Joshua. She is confident that we could move to an insulin pump soon if Joshua would like that. We'll definitely consider this, but first I want to get rid of the sickness.
Christopher, Daniel and Joshua are all feeling better this evening. They all slept a good bit today and were able to eat supper. Roger just told me that he is feeling a little queasy. Praying that he doesn't get sick too!!! Praying that Eliana would be spared as well.
As always, thank you for praying. I'm off to sleep now.
Last night was a long night - or maybe better said, a sleepless night. Roger and I were up talking some (should have gone to sleep). Christopher started feeling badly. He rarely gets sick.
By 2am, it was time for Joshua's finger poke. His numbers were good. 181. Thank you God! We are really trying to avoid crashes/lows! Off to sleep.
At 4:30, I was awakened because Joshua's tummy hurt. I went to his room and sat by his bed. A little while later, he began throwing up - and having diarrhea. :-( Poor little guy feels so crummy. In a very disappointed voice he said, "Doesn't look like the new medicine is working". I assured him that it could very well be working and helping, but not against whatever is making him so very sick.
After trying to go back to sleep, I was awakened awhile later by a noise. I rushed to the bathroom to find Daniel sick. I helped him and then got him settled and then tried again to sleep.
It seemed that 8am came very early (I'm hoping for a nap later today!). I got up to check Joshua's numbers. Good again. 130. He is asleep on the floor of my bedroom. (Not my top choice since the people sleeping in that room haven't gotten sick yet - but I hate to move him too.) I can't imagine the range of emotions that he must be feeling. I remember how scary it is to feel sick and so out of control of your body. And then the pain and discomfort. It's just hard.
I called his dr and she said I could let him sleep. I'll only give insulin as needed for what he eats. That is good news. She was pleased with his numbers too and was very encouraging about what a good job we are doing in caring for him.
I hear my name being yelled and go upstairs to find a mess. :-( Poor Daniel has gotten sick all over the floor of his room. I start cleaning him up and the phone rings from the other dr's office. I talk briefly and she says she'll call back and leave the info on our message machine. Good plan. I spend time cleaning up Daniel and the carpet. Get him settled into the "sick room" (Christopher's room b/c it has a private bathroom).
Time to start laundry - I'm going to try to do all the sheets today and towels and maybe air out the rooms. I just don't know what else I should or could be doing to try to clean up around here. I'm open to ideas if anyone has them.
I've cancelled Eliana's therapy - who wants to come into a house with so much sickness. Joshua has a renal ultrasound later this afternoon. (Roger will be able to come home to be with the other children - again who would want to come hang out here?)
In the midst of all this mess, I still have much to be thankful for. I'm thankful that Eliana has not had to deal with this. Please pray that she would stay well. Roger and I have also stayed well and I hope and pray that continues as well.
I'm thankful that we have great doctors, willing to go out of their way to help us. I'm also thankful for their encouragment.
I'm thankful for friends and family who are praying for us. Again, the encouragment is wonderful. Thank you!
I'm thankful for God. I can't imagine walking this without Him. He gives me a peace in the midst of all this, well, mess. The calm in my heart could only be from Him. It doesn't mean I'm not concerned, I am. I trust that the One who loves my children more than I can even imagine is holding them (and me) in the palm of His hand! He is good.
I'll hear the results later this afternoon/evening from the renal u/s. Other than that, I'm not expecting to much news to share. Three children sick is quite enough for now, kwim? :-)
Thank you friends your prayers and encouragment!
Sunday, July 5, 2009
Well, today (Sunday) has been more of the same. Isaiah threw up during the night. :-(
Joshua's numbers were fine at breakfast (210), had insulin and breakfast. Within 2 hours, he told me that he felt badly and wanted to be checked. 49. He is doing a LOT of crashing which is very concerning to us and to his doctor. Gave him juice and crackers and got him back to 108.
He continued to feel badly and had loose stools. Another 2 hours and he is low again. Ate lunch and called the pediatrician. I was thankful that Eliana's wonderful doctor (ped) was on call and I was able to get an appt with her at 1:40. Even though we have other children that have been sick, Joshua has been sick on and off most of the last 10 days. That is just too much.
It was good to see her and she joked with me asking if I was going to become a nurse when I grew up. She is a great doctor and tenaciously fought for Eliana in so many ways. I knew she would do the same for Joshua. We talked about his history and she was impressed with my notebook(s) detailing everything and the sheet of info I'd typed for her that I knew she would want regarding his sickness and when it occured. She told me that she thought Eliana had prepared me well to handle this. I agree.
We talked a good bit. She was glad that knowing the other children had been sick that it seemed more like a virus than something terribly wrong with Joshua. It may just be the combination of the diabetes and the virus is just too much for his little body right now. Joshua was able to give "samples" to be tested. He even commented that being a doctor was a great job because you got to examine "pee" - and get paid for it. LOL Love a little boy's sense of humor. (I hope this doesn't gross anyone out! Well, a lot of this is gross, so sorry!)
While we were waiting, she called Joshua's endocrinologist (who is also wonderful!). They talked for awhile and then I also talked with her. What I didn't realize is that while I wasn't standing there, that one dr had wanted Joshua admitted to the hospital. The other told her I could handle it. Then how about the ER? The other thought he would be better at home. That is a great vote of confidence, though a little unnerving too, kwim?
Here are the changes.
- Change in meds. One has been eliminated and the other is to be based on carb counting. A new med is being added (lantus). The hope is that this will eliminate some of the spikes we are seeing in his blood sugar levels.
- Joshua will be getting an ultrasound tomorrow of his kidney to see if there is anything going on there of concern.
- Lab cultures will hopefully be back in a couple of days and we will have more information from that. We will see the ped again on Thur
Joshua felt really crummy the first half of today. He even asked me if he would get to a point where he didn't have stomach aches every day. :-( I assured him that he would.
Joshua's endo dr called this evening. She has been so wonderful about emailing and calling us! She is really concerned about Joshua and even told me that. She is concerned about how many lows he is having. (Several a day) We talked about his new meds regimen and she wants his numbers tonight in an email and wants me to page her in the morning to discuss his numbers so we can decide together his med dosage. I'm so thankful for her availability, interest and desire to get this figured out. She has been analyzing his numbers and believes that we may be able to help him by making the changes in his meds. I hope and pray she is right!
I'm thankful for such wonderful doctors!!! God has blessed us greatly in this area by hand-picking people who have gone over and above in order to help our children. Thank you God!
More later (probably tomorrow) as I need to go test and get snacks ready. Thank you for your continued prayers.
Saturday, July 4, 2009
Thank you for your prayers for our family. We woke up this morning to everyone feeling well. :-) We decided to head out to a local 4th of July celebration.
Soon though, Joshua began to feel poorly (diarrhea). We then decided that I would stay home with him and the rest could go to the celebration. It ended up being a good decision because by 9:30 Joshua was throwing up. He didn't eat much for breakfast, but none of it stayed down. Poor little fellow. I started reading him a book, but after getting sick, he was just wiped out. He is sleeping now.
I emailed some with Joshua's endocrinologist yesterday. She is so wonderful!!! We have adjusted his meds in hopes that he won't keep having lows. He had another last night before bedtime. He was then high in the middle of the night (333) and fairly high this morning (over 200). I wish I knew what was going on.
If any of you reading this are dealing with Type 1, did your child go through anything like this? The stomach issues? I know some of it is viral as I've had 3 other children throw up in the last week and half. His is spaced out though. Is he just not healing or catching it again? I think that the diarrhea (I apologize if this is TMI) is not just a viral thing. I'm not sure what it is though.
I know if this continues that I will be taking him to see the ped. Just debating whether I need to do it over the week-end. Prayers for wisdom would be appreciated. It's not "urgent", but I don't want it to get to that point either, kwim?
We have managed a few fun things in the midst of this yuck. I redeemed coupons with 2 of my children yesterday and will post more and add pics later. I had hoped to do something fun with Joshua this morning, but he is just too worn out from all of this.
I hope you are having a wonderful 4th of July. I'm thankful for the many freedoms that we have in this country. I'm thankful for the men and women who have sacrificed much so that I could enjoy freedom. I'm thankful for Jesus for giving me freedom from sins. Freedom is a wonderful thing and gives us much to be thankful for each day.
Friday, July 3, 2009
Thank you friends for your hugs and prayers and words. Your encouragment means a lot to me.
Joshua was stable last night - 2am numbers were in the 200s (not uncommon for him at this point - and much better than too low).
This morning - 87. Low for a morning reading for him. Ate breakfast. Couple of hours later, he said he felt "funny". 67. Too low. Juice. Tried to get him to eat a heavy snack and he just isn't up to it. Had some grapes.
I have an email in to his dr and will call if I don't hear back soon. Not sure if this is sickness, too much insulin/not enough carbs, or going into the "honeymoon period".
Someone had asked if this could be controlled by diet. Joshua is insulin dependant. For the rest of his life or until they find a cure. (I know this and still writing it makes me tear up.) He will still need to work on diet (as do those with type 2), but he will never be able to stop taking insulin. His antibodies have attacked his pancreas and it is not able to produce insulin. This is one of the huge differences between type 1 and 2 diabetes.
He will go into a "honeymoon period" where his pancreas will give one last go of working. It will seem that he is cured and all is fine. This *will* happen, but we don't know when. Nor do we know how long it will last. This also makes me One of the doctors told me that parents often call it "the big tease". Yeah, that seems about right.
In the midst of it all, I'm thankful we are close to wonderful medical care. I'm thankful for those that have figured out how to help Joshua so that we can learn to help control his numbers so that he can live and do the things he wants to do in his life. I'm thankful for an amazing little boy who is taking this so very well. I'm thankful that God is holding us through all of this. I'm thankful for family and friends that encourage, support and pray for us.
This is hard, but I still have so much to be thankful for!
Also Daniel is still sick. He seems to be feeling a little better than last night, but is quarantined at the moment with a good movie.
Thursday, July 2, 2009
Joshua is having fluctuating blood sugars - and they are low. We tested at 9 and it was 68 which is low for him (under 80). Gave juice and then a snack. Sugars better 109. Felt badly an hour or so later and tested again. 49. That is really low. Juice again. Next test 108. He still feels badly though and we don't know if it's a low or being sick. Yes, he was sick again this morning.
Please pray for him. Lows can be dangerous and we just want to do the right thing for our sweet boy. This combined with the extended sickness has been hard.
More info on low sugars for type1. Don't read if it will worry you. I know this is common, but it is our first time dealing with a sugar that doesn't seem to be responding as it should.
Will update later. As you are praying, know that we still have a virus in our house. Daniel is down with it now. :-(
Short update: Joshua is asleep now and we'll be checking on him again at 2am. Hopefully he is stable.
He felt badly after the juice and snacks. (Had 2 rounds of snacks and 2 juice boxes.) Not sure if it was just the food/drink or the sickness he has been battling. He asked me when this was going to be over - the diarhea and vomitting. :( It has been going on for almost a week now - though not non-stop.
I'm off to sleep now. Will update tomorrow.
Wednesday, July 1, 2009
Thank you for your prayers. Things seem fine again - as they have the other times. So far, this is the 4th day for Joshua being sick. Poor little guy. He has had a great attitude about it all too.
My moring started with being woken up by Isaiah to let me know that Joshua had gotten sick. Isaiah stayed with me and helped me to clean things up too. I thought that was really sweet - and not something all of mine would have willingly done. LOL I've found God to be gracious in giving me a peaceful spirit about all the yuck I've had to deal with this week. That has been a blessing. I wish I could say that this was true all the time. So much to learn.
Joshua and Rebecca spent most of the day in their rooms. They both read books and worked puzzles. Joshua has gotten good use from the gifts he has been given while he has been sick. He worked on the neatest puzzle today - it's a globe worked in 3D. I'll try to take a pic and post it soon. It's very neat!
By lunch, both the sick children were wanting to eat. They felt fine by afternoon and have been eating well. It's a curious virus that is for sure.
Joshua's numbers today were pretty good considering he was sick. He last number though was his first official LOW. It was 68. I was stunned to see that come up. So was he. I asked him how he felt and he said his head felt a little funny. I explained to him that this was what a low felt like. That anytime he was feeling not quite right that he should let us know so we could test him and see how his blood sugar numbers were doing. We gave him a juice box and a strong snack. I expect better numbers at 2am.
For now, I'm hoping and praying that we are done with throw up and diarrhea. I really don't want anyone to get sick any more! I'm thankful it's not worse, but it has been going on for over a week now. I really thought we were done with it last week.
I did talk again with the doctor today. His appt is rescheduled for the 14th. That was the soonest they could see us. I really wish it were earlier, but this will be when it is. In the meantime, we just keep an eye on things and send in his numbers weekly.
More later. It's time for sleep.
Wow! This is getting old. I keep wondering if it's something more than a virus. It's just odd. The only thing that make me think it might be a virus is that his brother has been sick too. Also in a weird sporadic manner.
I could type details, but basically for Joshua, he has been sick in the morning - usually after breakfast. He is fine by lunch and has been eating well. I've wondered if it is a reaction to something. We are going to cut out all milk for 3 days to see if it is a lactose issue. He has been sick on Fri, Sun, Tue and now today.
I talked with the on-call endocrinologist this morning and she has advised that we keep our doctor appointment today. I hate to take him in if he has a virus and have prayed for clear answers.
UPDATE: Well, I guess this is my answer. One of them anyway. Rebecca is sick too. Same type of sickness so I'm guessing we have a virus here. I've cancelled Joshua's appt for the day. Hoping we can get it rescheduled soon.
Please pray for health for our family. I really don't want this making the rounds - especially for as many days as it has been going on. Thank you!
Would you pray for healing for our sweet boy?