Monday, August 22, 2011

It has been a long time...

It has been along time since I updated my site. So many things have happened. The Dexcom died and has been replaced. The insurance company will not allow us to refill anymore Novolog nor the Freestyle test strips at the local pharmacy. It has been so much headache and countless heart ache. If I have to go through this, what would Mr. R have to go through when I no longer able to fight for him and his right? I want a cure now for him so bad that I pray for it every day! I pray that he will have a normal life.
Tomorrow is his first day at the new school. I don't know what to think about the new health aide yet. I surely will miss sweet Ms. Julie who took care of Mr. R the whole year last year.
We went to meet with the district nurse last week. So many things to figure out! The Healthcare plan, PDM, Dexcom, spare insulin, backup pod, Glucagon, juices, snacks and etc! How am I ever going to figure things out, only god knows.

I hope all will go well tomorrow. I hope they find a cure soon. I hope we will win this war with the insurance company and with Abbott. I'm tired of explaining to ignorant people who doesn't seem to know what it feels like to have a sick child who appears normal because his parents struggles to keep him healthy and normal. No one knows what it takes to keep him healthy!

Please God! help us out... I'm so overwhelm...

Tuesday, August 9, 2011

Fasting for Ramadhan

Ramadhan started on August 1st of this year. Ramadhan is always a delightful month for my family. It is the month full of praying, offering, patience, delicious food i.e. desert, drinks and etc. For this special month, my husband, Mr. N and I fast from dawn to dusk.

To reward Mr. N for his hardwork and dedication, I always ask him what he would like to have for dinner (this is when we break our fast). I normally cook something spicy, veggie dish, something for the kids and and of course desert and not forgetting special drinks (fruit juices, or what ever the kids requested). Alas, all he wants, if he could have it his way, is to eat cheese pizza and chicken wings everyday.

Mr. R is not allowed to fast yet. Although he has reached the age where most kids have started to fast, Mr. R is not allowed to fast due to his diabetic condition. His blood sugar will crash if he doesn't eat when he is supposed to eat. Some people just don't understand this. I know some parents who have kid/s with Type 1 Diabetes have gone through this before too.

Not many people know that:
Type 1 Diabetes can't be controlled with diet.
There is NO CURE yet! Please stop recommending herbs, special milk, special machine that can zap the pancreas back to life..
He did not ate too much sugar !!!!
He can't fast because his body can't regulate his blood sugar.
What your parents, aunties or uncles have is Type 2 Diabetes, that could be control via diet, exercise, herbs, special milk and etc... this is not the same as Type 1 Diabetes. Sorry to sound so mean but what works for your mom or dad or uncles might not work for my son because it is not the same condition...  :-(
However, we do accept prayers for cure...

So, back to my ramadhan story here.

My mom promised a reward to Mr. N if he can complete the full 30 days of fasting. Mr. R was devastated that he was not allowed to fast. His main complained was "How am I going to make some money?".

Hahahaha! I told him since his brother is fasting, he should help his brother clean up the room and make sure that my garden is watered. I will reward him just by being nice and helpful around the house.

So what do I cook tonight? Mr. N wanted meat cooked in Indonesian style. Our nanny slow cooked the meat that has been cut thin with kluwek (not sure if I spelled this correctly) and salam leaves. The result is tender meat with black sauce called Rawon. We will also have eggplant (from our vegetable garden) stir fry in chilli with peanut, steam fish and last but not least telur dadar or omelette with cheese and sheredded chicken for Mr. R. For desert we will have Spring Fling cake made with zucchini from our garden. For drinks, Mr. M requested sweet, ice cold tea.

We will be breaking our fast at around 8:05pm tonight. We will sleep early and wake up around 3:30am to eat before the sun is up and we will start to fast again...

Sunday, July 24, 2011

RIP Mr. Dexcom

A quick update on our Mr. Dexcom. He is (not sure when I assigned a gender to the receiver! haha) not waking up ever again. Actually if you leave it plug in, he is doing fine but I can't let Mr. R stay plug in by the outlet either. So, tomorrow we would have to call DexCom to order the replacement.

Also on another sad and depressing note, I may lost my flexible working hours that I have had for the last 2 years. It all started when Mr. R was dx with T1D. I had to be there to pick him up from school because one day, last year,  his BG dropped so low, he was unable to even crawl home. Luckily, one of our neighbor was there picking up his kid. Mr. N carried Mr. R bag pack and the neighbor carried my son! I love all of my neighbors!

I hope my managers will understand my situation at home. I have never let anything fallen through the crack. I have worked so hard to ensure that my 'special' arrangement is not affecting anyone else at work.
Please pray for us. So many things going on I could hardly keep up anymore.

On a positive note, a friend of mine, bless her heart, has offered her child's car seat so Baby E could use a proper seat. He is over 20 lbs now and getting longer/taller by the minute. Thank you dear friend for all that you have done for Baby E.

Ok, I better clock in and start work again. I'm nervous and very worried about tomorrow. I have to talk to all of my managers about my flexible working hours. I hope and wish they will continue to support my existing schedule so I could be there for my kids especially Mr.R.

Please, please, please pray that everything will be ok for us!

Wednesday, July 20, 2011

Time to wake up Dexcom

Mr. M is at home today with the kiddos. I told him to try and wake up Dexcom. Dex has been resting for the last 48 hours in the bed (or bowl) of rice. Hopefully everything inside has been dried up and would work again. The replacement receiver is $199 but I have a feeling that we would have to get the whole set again and since the insurance will not cover this, it will be $900 for the whole thing.

Come on Dex...please wake up!!!!!

Tuesday, July 19, 2011

Dexcom is still dead... or just sleeping

Dexcom is still sleeping. I refused to say that it is dead. I know (hope and pray) that it will wake up and beeps again. I missed the alarms. Hahaha... I used to be so annoyed when it would alarmed in the middle of the Tae Kwan DO class but now I missed it.

Dexcom is sleeping in the bowl of rice. Hopefully it will wake up full of energy and ready to work again!. I'm letting it rest. It will have to work 24/7/365 again soon. That is if it works again. :-(

Please, please, please... wake up again!

Monday, July 18, 2011

Dexcom went swimming...

What a day! It was a crazy hectic day. Went to work at 8am today and left at 3pm so I could take the kids to their first swimming lesson this summer. They were super excited. Both of them called me to ask about where I put their goggles, noodles, sun block and etc...

On the way home, I remembered that both of their goggles had been thrown away due to old age. I stopped by Super Target, picked up 2 pairs of goggles, 2 new noodles and last but not least a new car seat for Baby E. On the way out to the cashier, I noticed that that car seat will not recline and the goggle was not the right size. I was running out of time so with 3 inch high heels, I sprinted back towards the back of the store to return the car seat (could not find anything else that I like for Baby E, so no car seat today!) and exchanged both goggles.

I made it in time (5 minutes) before lesson started, rushed the kiddos into the car, grabbed a bottle of cold water from the freezer and a small bottle of honey just in case if Mr. R blood sugar decided to plunge later.

Once we got there, the instructor told me that she had to hike the fee (another $10 more) since she has to drive so far to get to our pool. I was already frustrated at this point. I told Mr. N to start and Mr. R to warm up. Without further ado, Mr. R grabbed one of the noodle, put on his new goggle and dive in!!!

I suddenly remembered that I have not lower down his basal rate. Considering the temperature was hovering around 99F, I walked to the side of the pool, motioned him to come closer to lower his basal rate. He looked like he was going to cry. I was puzzled, why would he cry when he was just splashing around. He told me that he still have his Dexcom in his pocket. My heart sank. I knew Dexcom will not replace the receiver. They told me to get a replacement receiver which will cost us $199. I just paid over $800 for the whole setup (Dexcom, Omnipod and the extra insulins not forgetting all the barrier wipes, adhesive remover, all kind of tape to secure the hardwares to his small body!) The calculator in my brain was busy churning numbers trying to figure out how I could cough up another $199 to pay for the replacement.

In the mean time I called Mr. M. I told him not to get upset!. Suprisingly he was pretty calm about it. I called my mom next, wailing. She just simply told me that it is my fault since I should have got Mr. R ready in the first place and not rely on a 6 years old to do things on his own. Ugggghhh!

Brought it home, put the Dexcom in the bowl of rice. Here's hoping and praying that it will dry out and it will still work!

In the mean time, we just have to fly blind. If I have to get the replacement part, I guess I will find a way to pay for it. It is for Mr. R anyway. There's nothing I will not do for my kids.

After swimming and a 2 hours break, the kiddos went to Tae Kwan Do. I felt so blind. I have relied on Dexcom so much that I felt so scared! Scared because I can't predict the pattern of Mr. R's blood sugar. I checked his sugar twice during the TKD session but he was doing fine.

I felt like such a failure. I can't even keep the Dexcom safe. I wish I can be the best mom to my 3 boys but there are only so much a mom can do when she has to juggle work and home. Not an excuse but it is what it is. I never felt so alone...I want the Dexcom to wake up again and help me out...

Oh by the way, I called Dexcom Rep and I do not heart this guy at all...Dexcom customer service is nowhere close to Omnipod. He is no help at all... but than again why would he care? He doesn't have a child with Diabetes...

Monday, July 11, 2011

Baby E working out

Look at what Baby E has been doing... he has been such a funny baby. He says Mom all the time now. He called his grandpa and grandma Mom too. It used to be Nana (calling for his nanny), or Dadda but now everything is Mom, Mom, Mom...

Garlic Bread in the oven and Edrin can't wait.

I'm working out Mom!