My first pump pouch for boys!

I realize that the boys are being left out! In honor of Emma's little classmate Conner being diagnosed last week, I promise to get moving!! ;-) Once I finish up my clothing orders... yes, I still have a stack... I will be adding a few fabulously fun designer prints for boys! Here's my first. This one has a clear screen on one side with swirling planets and reverses to this fun appliquéd rocket. More to come soon....  

Speaking of bitter sweet....

I've been getting orders and I love making these sweet little pouches! Something I did not expect was how emotional it is to add each new name to list of "too sweet" little girls out there. Every time I put another initial on a pump pouch I feel a mix of joy and sadness. I can only hope that these will put a great big smile on the faces of these sweet little girls while they wait patiently for a cure...



And to sweet little Grace, who got her very first pump pouch this week.... I hope your pump start is going well!

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 thought 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 time 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 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.

We're winning!

...against the staph infection that is! :-) Less than 24 hrs after starting the treatment plan it was looking much better and is now almost gone. Yeah! The cultures came back as a strain of staph that is normally resistant to augmentin, but combined with the topical cream it seems to be doing the trick. No MRSA for us, thank GOD!! Just in case you don't know what a newly brewing staff infection looks like:

Pretty nasty stuff, and that was just beginning. If your kid gets a rash like this don't wait to see the Dr.!

OK, it's late... as always... more updates coming soon.

What now??

Wow, so much has happened since my last post. I hardly know where to begin... I think I'll work backward from today.
Today Emma woke with an angry looking rash all over her bottom. I'm talking about a rash that makes you grab the phone and take the first available appointment at the pedi... something isn't right... kinda rash. I snapped a pic of it right away because 1) I've discovered a need for documentation of bizarre health phenomenon since people always tend to assume overreaction from parents, and occasionally bizarre things disappear by the time you get to the Dr. 2) I have a new fabulous camera and I'm taking pics of everything anyhow and 3) our old pedi is just an email away when I need him, (have I mentioned that I love him?)
So I take the first appt, a mere seven hours after my call, and sit looking through hundreds of rash pictures online, (a passtime I would not recommend to anyone, unless you enjoy being grossed out and feeling itchy all over for no medical reason), trying to figure out what we have. None of the pictures really fit.
I decide to email the pic to our "Dr. Steve" and see if his trained eye can identify it with ease. A couple of hours later I get his response, " Impetigo from Staph aureus. Glad you are getting an appt. Watch for deeper boils that my need to be incised". OK, that's not what I wanted to hear, but it is what I was afraid of.
We finally get in to see the new pedi's NP at 4 pm. The rash has already spread down her butt cheek and on to her thigh, and it is ugly! It had almost reached her infusion site on her upper butt cheek as well so I pulled it and moved it to a safer location on the opposite thigh. I know that staph in a site is bad news. She says we have two possibilities, 1) it's normal staph and it will respond quickly to antibiotics (and it's only spreading like wildfire because Emma has "issues"), or 2) it's MRSA, the oral and topical antibiotics aren't going to help and she's going to need IV antibiotics by tomorrow. Freaking fabulous!!

So now we wait on a culture that will take 48 hrs to determine what's growing in there. We have to have a follow up appt tomorrow by 2 pm if all is well, or by 10 am if things look worse. She wants to have plenty of time to work on hospital admission stuff since it's Friday... just in case.

She wanted to put her on Bactrum, a sulfa antibiotic that can treat some MRSA, but Bactrum has been a serious hypo inducer for Em in the past and no one knows why, (I'm talking 200 point drops in 15 minutes, passing out at big brothers school orientation kinda hypos), so we decided to try Augmentin first. After all, this may be easy to kill...
So I put her to bed tonight after her heat soak, antibacterial scrubbing, antibiotic cream, oral meds, etc and go down stairs to chill for a bit. Her bg is 180, she had a good snack before bed and all is well, so why is her pump screaming when I come back up the stairs 2 hours later? Because she's 45!!! WTH? ????????? I grab some glucose gel which she sucks down with minimal protest and wonder why on earth she's low. Nothing is unusual except the antibiotic, why is this happening? I sit on her bed and look around her room and notice that another med syringe is sitting on her bedside table. It's her kidney med and she didn't take it in the chaos of the evening.

Somehow the irony of the whole thing just hit me. I'm terrified to giver her the best antibiotics to kill the crap that's growing on her skin because of the lows, but the lows happen anyway, only I'm not expecting them so they go on much longer than they should.... And the most dangerous threat of these kinds of infections are that they can damage your kidneys and cause glomerulonephritis, which she already has, and now the chaos of actually treating the infection has stopped us from treating this "potential complication" that she already has. What can I do but cry, have another glass of wine and update my blog... there's much more to update, but I have to get some sleep. TTFN~