What a FUNK, and some updates...

Well, HELLO there!

Has it really been 4 1/2 months since my last post? Wow!

Life has been crazy.

Isn't it always?

And I have been in a major FUNK.

Diabetes FUNK.

ITP FUNK.

Sleep FUNK.

Blogging FUNK.

You get the picture.

Time to get out of this FUNK and move forward. I miss blogging, I really do. Just trying to fit it into my life these days has been impossible. Clearly.

So, what have we been up to since November 2011?

Here is the quick bullet point update...

• The Princess had a sleep study done in December 2011. We had this done due to her continuing sleepless, restless nights. She hated the study and being hooked up to everything you can imagine. The results showed mild sleep APNEA, for her mostly hypopneas. It made total sense to me. She has never breathed normal when sleeping. Ever. I have always noticed a change in her breathing while she was sleeping. As to why, they have no idea. She doesn't fit the description of a "child with apnea". She isn't overweight and she didn't have enlarged tonsils. We are still working with her doctor and I have emailed a specialist in CA to see what else we can try.

• The Princess had her tonsils out in December 2011. We did this in response to the above diagnosis. I pushed to get it done before the end of the year since we had met our out of pocket max for her. Of course, anytime we do any procedure, we have to get her platelets checked first. At this time, they were too low for this messy procedure and we had to do another IVIG to boost her counts before surgery. We also had to stay overnight for observation due to her ITP. And let me tell you, she is NOT a very patient patient! She tried taking her IV out a few times before we taped a sock over it. She would not let me leave the bed without FLIPPING out. It was nuts. But, we only stayed one night and she healed fine. Unfortunately, this did not help her sleep. Or it hasn't appeared to in the months following surgery.

•  The Superhero had his quarterly endo appointment in December and his A1C was still higher than I like. He is back in the 8's and I can't seem to get things straightened out. We go back in March and I am praying for better numbers. There is nothing consistent about his BG these days. This is making it HARD to know what to change and when. I am sure it will settle down at some point.

• Both kids had croup in January. This meant steroids for both. For The Superhero, this meant HIGH BG's and, hello, that is not helping the A1C! And for The Princess, it boosts her platelets. This can be  deceiving and make it look like the ITP is better, when it really may be false hope

• The Princess has gone for platelet counts several times over the last few months. Each time being either after an IVIG treatment, or after steroids, her counts have been good. We go back again in April. It will be 1 year since her dx with ITP. If her counts drop by then, we will be discussing doing a bone marrow biopsy, just to make sure there isn't anything else going on.

• The Superhero is still in pre-school and loves every minute of it. He has been signed up to start Kindergarten next year. I am still in denial.

•  The Princess has been put in and taken out of daycare again. I need her to go so I can get work done during the day, but she got sick 3 times in the 2 1/2 weeks she had been back. I have found a much better solution that is working out SO much better. A fellow D Mama and friend of mine who lives 1 mile away does pre-school with her niece and nephew a few days per week and has graciously allowed me to drop The Princess with her three days per week. The Princess is in LOVE with her and her kids. They do so many fun things that I think if there was a choice, The Princess would live over there. 

Whew... Now that you are caught up on what we have been up to, I promise, ok maybe I shouldn't make a promise I am not sure I can keep... I will do my best to keep up with blogging more often. I miss it. I really do. I just need to make it fit into my life again.
 

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Sleep Apnea. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Update on The Princess

Well, if you read THIS post, then you know that we went in to get tubes for The Princess. I am happy to report that the surgery went well and she is doing mostly better now.

The doctor said her left ear was REALLY inflamed and full of fluid (which he drained). She did great going off to the nurse before the surgery, only cried for a minute.

She had a hard time waking up after wards. She cried a lot and was thrashing herself around. I went in and held her in recovery and once she opened her eyes we got her to drink a juice. Then they rushed us out (that is how out-patient works around here).

They seem to kick you out pretty quick. She was still pretty fussy so I sat in the back of my dad's truck with her. I had her eating snacks within a few minutes and she was a much happier little Princess.

My mom took The Superhero to school and picked him up. Then she kept him until the afternoon so I could spend the day with The Princess.

The Princess and I watched a Strawberry Shortcake movie (her new favorite) and then we took a 2 1/2 hour nap around 11am. It was SO nice to sleep! She has not napped that well in a LONG time.

Since the surgery, she has started going to sleep easier. She is still not sleeping well, and is in bed with me every night.

She has also started talking and demanding things in her sleep. The other night she insisted we get her crocs for her (either that or socks). Before we even had a chance to get them, she was fast asleep. Last night she insisted on having a hair bow. I told her I was going to get one, and she went back to sleep while I pretended I was getting up. Silly Princess!

And on another Princess note, we went to the GI doctor yesterday. I can honestly say we talked about EVERYTHING that has ever gone in and come out of The Princess. There was more poop talk than I could have imagined.

But, the doc has determined that we definitely need to do an Endoscopy (upper) and something else in the lower area too. She named several reasons that The Princess could be feeling the way she has for so long.

I have to go back to giving her Gluten for the next couple of weeks and the procedure will be scheduled for 2-3 weeks from now.

I will keep you all posted on when this is scheduled and how it goes. I just want answers. She needs to feel better.

Thank you all for your thoughts and prayers. And, I will leave you with some pictures from her surgery day. Enjoy!

In Pompa's truck on the drive over, 5:30am.

She REFUSED to wear their gown, she chose to be naked instead (just a diaper).



Being super cute.


"Reading" a book with Pompa. (really watching the movie instead)



Eating a snack on the way home.

Ear Update

I have been writing my blog post update post in my head for days! I have not had time to get it typed up. BUT I did not want to wait to update you all on The Princess' ears!

She is MISERABLE!

We took her to the doctor last Wednesday and started antibiotics. Went back on Friday because she was not improving AT ALL. The doctor on Friday (we had been seeing the Nurse Prac. the other days) could not believe how bad her left ear was! She insisted we get into the ENT that day!

So she called and got us an appointment. We went from one docs office, quick drive through McD's and off to the ENT.

He said her ear was bad, but did not require an emergency surgery the same day. We would schedule it for Tuesday.

With Tuesday being surgery day, that meant NO motrin for 3 days before surgery! That mean ONE CRANKY PRINCESS ALL WEEKEND LONG.

She has been miserable and it gets worse by the day.

Today was the first time at daycare that they told me she cried at nap time. The director had to come and hold her until she fell asleep. :-(

Surgery is scheduled for 7:30am tomorrow. So, if you could all say a little prayer for my Princess tonight through surgery time, I would appreciate it.

I know this surgery is "no big deal", but she still has to be put under. And there are always risks. But, I know she will feel a TON better with tubes!

I will update again tomorrow if I can.