We've had lows.
We've had low lows.
Today's low was our lowest low.

Yesterday Dr. T called with some changes to Nate's morning basal and breakfast I:C ratio.  I was excited to make the changes because sometimes it's just nice to have someone look at things from a different view.  At our appointment last week (remember the one where I forgot our bg logs) we discussed Nate's morning spike but we didn't make any changes since we didn't have the logs.

It was a big change so she warned me to be on the look out for lows.

This AM was pretty - - - no breakfast spike.
Although excited about achieving pretty numbers after breakfast Jim and I were keeping a close eye on Dex.

I checked his bg at 9:58 - 134

I checked Dex and it said 130 but no arrow. I hate it when Dex doesn't have an arrow. Come on, Dex - that's what we hired you for - - - the arrows!!

20 minutes later Nate was crying and fighting Jim about getting dressed.  It just didn't feel right.  I grabbed the meter and checked his bg again --- 39.

We've seen lower numbers.  Nate's lowest low is 30 but this 39 was far worse than the 30 we saw shortly after Nate's diagnosis.

He was crying.
So tired.
So lethargic.
He wanted his mommy and his mommy wanted him.
Juice box down.
More crying.
So, So, So Sleepy.

He kept falling asleep on my shoulder, he couldn't hold up his head, if I didn't support his back he was falling backwards.

Down - Down - Down - he wanted me to put him down on the couch.
I put him down and he fell backwards - he couldn't sit up.
He fell back.
Closed his eyes.

No Nate - NO NO NO!
Please don't close your eyes.
NATE WAKE UP!!

Jim got him to eat 10g of banana
He was sleep eating.

NATE WAKE UP!

PLEASE BABY OPEN YOUR EYES!

NATE OPEN YOUR EYES!
OPEN YOUR EYES BABY!
PLEASE DON'T DO THIS!
OPEN YOUR SWEET LITTLE EYES FOR MOMMY!

Finally Jim could tell he was coming around.  I was holding him now with his head on my shoulder and Jim was watching his eyes.

Glucagon is in the kitchen.
Glucagon in the D Bag.
Glucagon is in the truck.
Glucagon is in my purse.

We were seconds away from using the glucagon for a 39.

To say that I was scared would be an understatement.

I was terrified.

I wanted to curl up into a little ball on the floor and rock back and forth.

Fortunately, in moments like this we are able to pull down from deep inside and find the strength we need to get through the moment.

Today I found some extra strength and got through the moment.

I waited until later to fall apart.

Here are 2 great posts from PWD on how it feels to be LOW:

I am Low - Haley @ Naturally Sweet
He Held Me - Sarah @ I don't have Diabetes - I've got 'Tha Suga'

As always thank you all for all of the supportive comments from last night's post.  It feels good to move on.  It's a lot like a break-up.  I loved our CDE very much but she didn't love us back so now it's time to let go.  Done.

Today we had our 1st appointment with our original Endo, Dr. T.  She was the one on-duty when Nate was diagnosed and so lucky her --- she gets Super Nate and his CrAzY mama!  We hadn't seen her since December of 2009 but she has followed our progress through my blog and through Joanne -- Elise is also a patient.  And . . . now that I think of it I believe it was Dr. T that originally brought Joanne and I together.  Wow - I should be forever in her debt just for that!!

I'm excited to say that the appintment went very well.  Hmmm . . . that is to say that other than the fact that

• I spent all morning printing out our OmniPod and DexCom logs and forgot to take them to the appointment
• Sophie has some tummy issues this AM so we were running a teeny tiny bit behind
• No matter how many toys I provided Sophie and Nate fought over each and every one
• Both kids thought it would be fun to climb up on to the furniture in the room and JUMP OFF!

Other than being totally stressed out of my mind the appointment went really well.  I love going to Children's Legacy Campus because it is 5 miles from my house.  It is much smaller than the Dallas facility with a much easier check-in process. The only draw back today was that this campus was not able to upload the OmniPod reports which the Dallas location can do.  If they had been able to do that -- me forgetting the reports would not have been such a catastrophe!  Hopefully, they will be able to do that by our next appointment because it is quite likely that I may forget the reports again - just depends on the day!

Nate was a total ROCK STAR today.  He did everything they asked him to do and did not shed 1 single tear.  He's seriously one brave little guy!

The worst part of the appointment was when Dr. T told me that Nate's a1c is currently 7.9.  I had a total WTF moment and nearly passed out.  He's been sick for 2-weeks so we've been running a wee bit high but I was totally not prepared for that number.  His PDM shows a 90-day average of 170 right now so I knew it would be higher but that 9 on the end really through me right over the edge!

Now, I know I have written a thousand times on other blogs about it just being a number, preaching about how you shouldn't let the number define you, saying it's not a report card . . . blah blah blah!

I LIED PEOPLE!!!!! 

It's not just a number ---- it's my son's life!! 
The number does define me ---- I feel like a crappy pancreas.
I feel like I just got an F on my report card!! 

UGH!  I feel like someone needs to come remove the dagger that is piercing my heart right now!!

Drama Queen - maybe!! But Oh My Goodness . . . I just wasn't expecting that number at all. 

Ok - I know you are all going to say all of the same stuff I've said to you in the past and I appreciate it.  I really do. :)

Reyna has a great post on Joe's A1c and her mixed emotions --- check out her post here!  I, like Reyna don't want to offend anyone by being so upset - I know it could be worse.  I'm hoping you all understand.  As a mom I put SO much into Nate's care that maybe I do look at this as my report card.  I was never a straight A student but I enjoyed basking in the glow of the A/B Honor Roll quite a bit!  There were the occasional progress reports sent home but that was my warning to step up my game.  Maybe a progress report would have been helpful in this situation.  :)


Ok - so to leave this post on a positive note I want to add that Dr. T was just so kind today that I had to share this last little story.  She reads my blog occasionally and she mentioned that she read my 'Help Me' post from last month.  She had a few kind words to say about the post and she brought me a book written by Nancy G. Brinker, Founder of Susan G. Koman for the Cure.  She thought the book, Promise Me (How a Sister's Love Launched the Global Movement to End Breast Cancer) would be a good read for me. I couldn't agree more. 

Thanks, Dr. T.

It's nice to be back.

Now let's work on that A1c.

Hello friends - it's been a while. Lately I've been overwhelmed with life. I hate it when life gets in the way of my blogging. Grrrr!

So, I'm a bridge burner. At least that's what someone told me last week. It made me sad to hear those words. I don't want to be a bridge burner. Apparently, my social media tendencies get me in hot water.

I'm a nice person. Really quite likable and pretty funny too!
Well, that's what my mom says anyway. <---- Love her!

When we left Children's Hospital of Dallas I wrote a letter to them here on my blog. It was honest, from the heart and how I felt and still feel about our experience there. I don't regret it. From what I hear not a lot has changed with the Endocrinology department there. I am about to find out.

We got our children insurance through CHIP starting in January after being without insurance since September. I was excited to have coverage after being without for 3-months. Until I found out we would no longer be able to see our current endo.

I knew that Dr. X was not on the CHIP provider list but my parents had offered to pay for Nate's appointments so I thought all was right in our world. Boy was I wrong. When I called Dr. X's office about an prescription refill I mentioned that we would now be covered through CHIP. The next thing I knew I received a call from the office manager letting me know that Dr. X would no longer be able to see Nate. I explained that we would self pay but apparently we are not allowed to do that.

I was devastated. I called our CDE, the nurse and left a message for the doctor. I didn't hear back. The hardest part of this is that when we left Children's it wasn't really for a new doctor. I liked our doctor just fine. It was really for the CDE.

When I met our new CDE we became fast friends, she seemed to really care about Nate and his health. The best part was that Mr. Nate really seemed smitten with her too. This was the ideal relationship for me. It was exactly what I had been looking for and had been missing at Children's. I just wanted someone to care about Nate and know his name -- not just his ID #. It was personal, it was open and I could call or text her anytime. She taught me so much about diabetes and how to care for my son. I was in love! :) Total CDE Crush!!

Until . . . again with the bridges.

Apparently this post made her SO mad that she decided to just stop. She was done with us. I spoke with her 1 time about the post and that was the last time we ever spoke. I left numerous messages that went un-returned. I texted . . . I got crickets.

I'm not sure I can articulate how I have been feeling about this. I cried. I'm sad. I feel so alone. All I have ever wanted was to get the best care possible for Nate. For me that includes a personal touch. Is that too much to ask? I feel really alone in Nate's diabetes right now.

Maybe I'm just spoiled? Our pediatrician is a personal friend so I can chat with her anytime. I never - ever expect any special treatment from her but it is always nice to walk into her office and know that she genuinely cares for my children.

Sadly, with CHIP I can't even take my children to our pediatrician anymore. Everything is changing -- too many changes. I took Nate to his new Primary Care Physician just to get a referral to go back to Children's and she clearly knew very little about T1. Which is ok since we won't be seeing her for Nate's diabetes.

BUT!!
There's always a but - right?

A few weeks ago Nate's DexCom sensor broke off in his tummy. I called DexCom but the CS rep assured me that I must have been mistaken. Hmmm - ok. I wanted to believe her but a little while later I found a hard lump on Nate's tummy where the sensor was on his tummy. Hmmm - - - not good. We haven't seen our Dr. at Children's yet so the staff there won't talk with me. I texted our CDE and explained the situation ----I pretty much begged her to respond. I got nothing. I explained that we were between endos currently and our new PCP had no idea what a DexCom was so I just needed a little advice. Still nothing!

* The office has been very accommodating with  Nate's rx refills -- we've been stuck in this Endo limbo for a while and Dr. X's nurse has been very kind and very helpful.  Children's couldn't sign off on any prescriptions for Nate since he hasn't been seen by a doctor there since 2009 so I had to call and ask Dr. X to write all new scripts for CHIP.

Alone.

That's when I realized that my blog may be causing harm to Nate's care.  Is this possible?  Should I not be allowed to come here and vent my frustrations?  Express my feelings?  Sadly,I guess not!!

I am thankful that our CDE was so thorough with Nate's care while he was her patient.  She taught me so much and that information in invaluable!  We haven't seen an Endo or a CDE since September.  I've been caring for Nate on my own.  Making all decisions, changes and adjustments on my own.  Still I can't help but feel alone.

Thank goodness for the support and knowledge I receive from the DOC. 

Tomorrow is our 1st appointment back at Children's Hospital.  I am so thankful for Nate's doctor there.  We haven't seen her since 12/2009 but when I emailed her and let her know we were coming back I was excited when she promptly emailed me back and said that we would certainly keep the lines of communication open this time around.

We are going to Children's Legacy instead of Dallas so I am hoping that will help make going back a bit easier.  It's just 5 minutes from our house.  I'm actually really excited to visit with our original endo.  She has known Nate since his dx back in September of 2009 and has always been kind and caring.

It will be nice to have someone in our diabetes corner again.  I don't like to be so alone!
I'm thankful that she read that open letter to Children's responded to me and passed the information along to the appropriate people there.  We walked away from Children's but she did not abandon us.  She never stopped caring or asking about Nate and how he was doing.  We are going back and she is welcoming us back.  I could not be more appreciative.

I'm actually looking forward to our endo appointment tomorrow.  I don't think I've ever said that before.

Although I will chronicle our life back at Children's Hospital here on HWAP I am determined not to burn anymore bridges!!!

Oh yea - I've been at it again . . . More Pod Projects for your viewing pleasure!

I believe it was my lovely friend, Alexis that gave me the idea to make magnets out of the pods . . . So . . . magnets we made . . .







They would be SUPER cute on the fridge!  Ours just doesn't happen to accommodate magnets --- so the filing cabinet works too!!

Today is Sweet Sophie's birthday. 
Oh, how I love my precocious little princess.
She has the smile that can light up the entire state of Texas!
She is a pure delight and a bright light in our lives.

2/2/2006

Today is her birthday and I want to tell her stupid Crohn's to leave my little girl alone!!  Today is her special day!!  She doesn't deserve to feel bad.  She doesn't deserve what you do to her little bitty 5-year old body. She couldn't enjoy her pancakes at breakfast, her special time opening gifts and you even robbed her the pleasure of eating the wonderful birthday cookies that we made today.  I cannot hate you because you are part of who my special girl is but I hate what you are doing to my princess today and everyday that you rear your stupid, ugly head!!  <--- Yes, I feel better after calling names!!



Two things that I will not forget about today - - -

After Sophie got out of the shower she was standing in the bathroom with her robe and slippers on --
She asked "Mommy, when will I be 5?'
I answered "You are 5-years old today, Sweet Girl"
to which she replied "but Mommy - I'm not big like Emma"
I told her "Emma is almost 7 -- you will be that size when you are almost 7 too"
Sweet Sophie looked down and her slippers, lifted her foot just slightly, and said "but Mommy, my slippers still fit today --- I didn't grow at all.  I'm pretty sure I'm not 5 yet"
I answered with a big hug and kiss and a little chuckle!


After breakfast today I found Sophie in her bed resting and when I asked her why she said that she really, really wanted to feel better today because it is her birthday.  UGH!! 







Sweet Girl - I really, really want you to feel better today and everyday.  I'm so sorry you have been given this cruel, grown-up disease.  I wish I could take it from you.  I would be the happiest mommy in all of the world if I could take your Crohn's and Nate's T1D - Happiest Mommy EVER!


For those note familiar with the symptoms of Crohn's:

• Diarrhea. The inflammation that occurs in Crohn's disease causes cells in the affected areas of your intestine to secrete large amounts of water and salt. Because the colon can't completely absorb this excess fluid, you develop diarrhea. Intensified intestinal cramping also can contribute to loose stools. Diarrhea is the most common problem for people with Crohn's.
• Abdominal pain and cramping. Inflammation and ulceration may cause the walls of portions of your bowel to swell and eventually thicken with scar tissue. This affects the normal movement of contents through your digestive tract and may lead to pain and cramping. Mild Crohn's disease usually causes slight to moderate intestinal discomfort, but in more-serious cases, the pain may be severe and include nausea and vomiting.
• Blood in your stool. Food moving through your digestive tract may cause inflamed tissue to bleed, or your bowel may also bleed on its own. You might notice bright red blood in the toilet bowl or darker blood mixed with your stool. You can also have bleeding you don't see (occult blood).
• Ulcers. Crohn's disease can cause small sores on the surface of the intestine that eventually become large ulcers that penetrate deep into — and sometimes through — the intestinal walls. You may also have ulcers in your mouth similar to canker sores.
• Reduced appetite and weight loss. Abdominal pain and cramping and the inflammatory reaction in the wall of your bowel can affect both your appetite and your ability to digest and absorb food.

Other signs and symptoms
People with severe Crohn's disease may also experience:

• Fever
• Fatigue
• Arthritis
• Eye inflammation
• Skin disorders
• Inflammation of the liver or bile ducts
• Delayed growth or sexual development, in children

When Sophie's Crohn's flares she has to use the bathroom anywhere from 10-15 times per day.  She has severe abdominal cramping, a lot of bleeding, and diarrhea. She spends about 10 or 15 minutes in the restroom each time due to the urge to keep 'going'.  It is heartbreaking at any age but to see my little girl suffer is killing me! 


This is the 2nd time since her diagnosis that she has come out of remission with the onset of a severe cold or flu. I don't know if there is a relation with other illnesses that brings it on because we are still learning as we go. 



Please pray for a swift remission for Sweet Sophie.  Thank you!! 


And . . . before I let you go I would like to introduce everyone to a new D-Mom that I have had the pleasure of chatting with here locally.  Her son, Parker was diagnosed with T1D in December.  I still remember so clearly those overwhelming feelings of sadness and confusion after Nate's diagnosis.  Thank goodness I was  welcomed into the warm embrace of the DOC.  Won't you please take a moment to give Heather some D-Mama and D-Peep love over at The Anderson Chronicle?

XOXOX -