Well that explains a lot.....

Insulin pump pouches, my new boutique project~

So as you may know, I sew... not just sew, but design and create boutique girls clothing, here's a peek at some of the things I've done for my ebay boutique group...  about me page  It's been a lot of fun, and a lot of work and unfortunately it kept me from doing what I planned to do when I started Too Sweet Boutique... pump friendly clothing and trendy pump pouches. Well, I'm getting back on track! I've been working on a perfect pump pattern and I think I finally have it! (after 4 years of using every pump pouch on the market and making countless versions of my own)  I plan to sell them on etsy and see how it goes. They will feature high quality designer fabrics, durable construction and fabulous fit, but they will also be stylish! (something I feel is missing in the options currently available)

The Perfectly Practical Pouch, is my personal favorite for everyday wear.
It's practical & stylish and will come in a variety of fashionable prints for boys and girls.

It has a clear insert so you never have to take your pump out of your pouch for boluses or to look at the screen, (fabulous for cgms graphs and invaluable for night time checks) It can be reversed so the clear insert faces in or out.

It fits great over or under your clothes. (unlike other designs that allow the pouch to hang off of the belt) So you can still wear your favorite clothes w/o that big lump.

Of course I also have to offer a custom boutique-style pouch! These are perfect for any little fashionista, (inspired, of course by mine), whether it's a special occasion or just everyday style, and they make great gifts! They are faux fur, with custom monogramming and a mixture of designer fabrics in the color scheme of your choice.... or a fun mis-matched, goes with everything variety of trims, (as shown).  Same great fit as The Perfectly Practical Pouch, but this is The DIVA Pouch;

So.... I am working on finishing up my clothing orders and gearing up to open my etsy store in the next couple of weeks. I have a few more fun items in the works and I am looking forward to this next phase of my work!! :0) Stay tuned!

Have I mentioned that time flies.....

So.... yea, it's been forever since I blogged. There are just so few hours in my day that aren't already filled with kids and sewing and site changes and facebook and Mobsters.... LOL. Oh well, it's finally time for an update! :)

Emma is settling into kindergarten!! We decided to go for it, even though she didn't turn 5 until 48 hours before school started and I was totally on the fence... So far so good. It's week four and so far she has "only" missed two days of school, both days with fever and normal back to school crud. Over all she's been more well than not, and for that I'm grateful!

She is loving school and making friends and enjoying showing off her various outfits. (the office ladies have her come in and model for them each morning, cute~) It's been a nice change for both of us to HAVE to get up and dressed and out of the house early each morning. We are definitely on a better schedule than we've had in years and I'm liking it! (unless I've been up all night with blood sugar drama ;-))

I decided that it was in her best interest to have her identified as OHI, (other health impairment), through the special education department before we even attempted school. I really wanted her to have an aide to keep up with her pump and cgms at school and the OHI provides funding for that, (a 504 plan does not). It also allows her to have a half day of school, (because she gets so tired), and to be excused for medical absences without a fight, (whether she's sick or having crazy blood sugar or kidney problems or just out of town at another Dr. visit), it also provides home bound tutoring if she ever has to be out for an extended period of time. Unfortunately we did not get the aide we were promised, (long story for another day), but since she's only at school for 3 hours and they are working hard to accommodate her needs I think we're OK. It was a long process, but I really think it was worthwhile. School is always going to be a challenge for her, so the easier I can make it for everyone involved the better! Now if I could just kill that breakfast spike that causes her cgms to alarm each morning during school I'd be thrilled!

Here's my little princess after a big three hour day of kinder last week. Simply exhausted. She's not always this tired, but she's always ready for bed by 7. Poor little sweetie.

This summer we added one more diagnosis to the list, (sigh). She now has Hashimoto's thyroiditis and will be starting thyroid replacement therapy. She's had many symptoms over the past year; fatigue, puffiness, body aches, dark circles, dry skin... she even has high cholesterol now which is apparently related. The endo seemed very hesitant to give me the news. She said, "I hate to tell parents about any "forever" diagnosis."  But I say if I can give her a tiny pill and make her feel better it isn't that bad... (can you say perspective?) I'm honestly relieved that it may "just" be the hypothyroid making her feel bad and not her kidneys. I'm definitely grateful that she'll have more energy. I can't take much more of her telling me she's "SO tired" all day long. I just hate that she has to feel that way. Bring on the synthroid!

As far as her kidneys are concerned we are still waiting for a clear diagnosis. For now it's still an "immune complex mediated glomerular disease with focal segmental glomerular sclerosis," (say that five times fast), and all we know is that her whacked immune system is the cause. Her proteinuria is much better right now, (so her ace inhibitors are helping), but she continues to spill a lot of blood in her urine, (likely from the scarring in the filters). Her renal labs are still in normal range, but her creatinine has been creeping up over the past several months and is now at the very top "normal" value. Hopefully this trend will not continue.

We are seeing the chief of nephrology at Texas Children's in Houston on the 30th of this month. I'm looking forward to having another doctor involved since her current neph is unsure of what to do or expect.... or even what this is! I had her kidney biopsy slides sent to a world renowned renal pathologist and I should get his report at the visit. We are also seeing a new endocrinologist the same day who will be helping us with the new thyroid meds and, of course, her diabetes.
We already established care with pedi rheumatologist there at TCH who specializes in autoimmunity and pedi SLE. She is wonderful. She did a ridiculous number of labs when we were there last month but she did find that Emma's ANA titer is now very high, (a sign of active AI disease/damage) and also dx'd her Hashimoto's. She's determined to help us make the best decision about when and if the benefits of steroids and immune suppression outweigh the risks. I pray that she can.
Her opinion is that Emma does not have Lupus in particular, she has a more rare combination of AI problems that do not fit into any exact diagnosis. She thinks that Em may continue to develop Lupus, but that it will not be the solution to this puzzle, merely another piece. She is more concerned about treating the current diseases (as much as we can) and watching for vascular and central nervous system problems that are common in children who have this level of autoimmunity. So what we have here is aggressive Multi-system Autoimmunity at a very young age and the prognosis is about as clear as mud.

I hated to change all of our doctors again, but Houston is a great option for us now. It's less than 3 hours away from our new home and I have family there. It is such a blessing to have a comfortable place to stay, with people I love to be around, for free! It makes these specialist trips almost bearable! :0)

Oh and her staph is gone for now... we fought it over and over throughout the summer, but I think we may finally have it under control. :) We also found a new pedi here in town, (less than 5 min. away), that is exactly what we needed. He's very smart, a little OCD and knows what he can/should manage, when to defer to a specialist and most importantly when to ask ME! lol
I guess that's enough for now! More to come soon.