School Days and D

School is going so much better than I expected. The first few weeks were a tad bumpy and there was a lot they didn't know, but we have come a long way. We are now nine weeks into the year and have yet to have a serious blood sugar problem while there. (Yes, I'm knocking on my wooden desk as I type this, and rethinking it now ...hmmm) I credit my endless harassment of the school staff, my many weeks of unrequested classroom volunteering, (oh yeah, I'm "that" mom, LOL), detailed laminated instructions and of course one handy little tool called a CGMS that allows constant monitoring of her blood sugar and early intervention of problems.
I'm sure it sounds like overkill to some, but my baby girl has been insulin dependent since infancy and I have given my ALL 24/7/365 to keep her safe from this beast since her diagnosis. I have no plans to be less cautious with her life just so she can attend kindergarten. Like I said, so far so good. KNOCKING WOOD!! ;-)

I am SO pleased that Emma's teacher has now taken an interest in her numbers and accepted the responsibility of checking her sensor throughout her time there. She keeps a written log in the classroom of sensor readings and calls the nurse when it alarms. She had no experience with D when we started the school year but she is now trained to test BG and give glucagon. She calls me if she has any concerns. She even called me to walk her through giving a bolus over the phone so Emma could have a cookie with all of the other kids one afternoon when the nurse was out. Wow! She has said a few irritating things like, "shouldn't she be stable by now" and "that's a good number?", (in response to a post breakfast reading that I was fine with), but she's learned a lot and she usually has a good attitude about it all and for that I'm grateful.

Emma was the only child with diabetes in her entire school when the year started, but several weeks ago a little boy in her class was diagnosed. I was completely mortified since I'd been watching him ask to go to the restroom every 30 minutes during my hours of classroom volunteering. I just almost said something to the teacher, but then that little voice of doubt chimed in...."you're oversensitive, you think everyone has symptoms, this kid does not have diabetes." I almost cried when the teacher told me the news. She actually did. She'd learned enough from a few weeks with Emma in her care to understand that his life would never be the same. Of course adding the responsibility of another insulin dependent 5 year-old to her class of 23 kindergartens might've had something to do with those tears too. lol. Wise woman.

In the weeks following his diagnosis I was forced to step up and challenge the school to be a better, safer place for children with diabetes. I had not pushed many issues with the school, like training staff members on glucagon or having a back-up person for testing/treating if the nurse was busy. I was always there if the nurse was gone and planned to attend all field trips and activities, but this little boys parents were not.
He returned to school 3 days after starting insulin with a roller coaster of numbers and a plan to test only before lunch and once in the afternoon on PE days. It wasn't until I started asking the teacher send him to the nurse in the morning, because he looked low to me, that they started testing him more frequently. There were days that he was already low when he arrived and days that he didn't finish his lunch (but no one was checking this in spite of injecting him before he ate) so he would be low on the playground. Ugh! Poor kid. :(  I never saw the parents at school so I offered my number and email info, but I never heard from them.
The second week that he was back at school was our first class field trip. We were walking two blocks to a fire-station, getting an hour long tour, then walking two blocks back to the school. I planned to walk with Emma, of course, and had her kit and ample low supplies for our fun little adventure. When we were getting ready to leave I asked if the teacher had C's kit.... to which she replied. "NO." To which I replied, "Why not???" So she explains that she is not trained to test him, and I can not test him because I'm not trained school personnel and the nurse is not coming so there's no sense in taking his kit -insert moment of dumbfounded silence- So then she actually says to me.... "at least we're walking to a fire-station and we won't have to call 911 if something happens." Nice.
I did actually go to the nurses station and attempt to get his kit, but the substitute nurse said I couldn't take it. I told her that I would be testing him and treating him if I was concerned for his safety, and that if I didn't have his kit I'd use Emma's. She just shrugged and said that would be my decision. grrrrrrrrrrrrrrrrrrrrrrrrrr
Thank goodness the field trip went fine, though the teacher and I spent most of the walk asking C how he felt every few minutes. It was scary. When I got back to the school I made a b-line for the principals office and we had a nice talk long about D and safety and liability and how this could never happen again. Within the week our teacher and two alternates were trained to test, treat lows and administer glucagon. It is now official in our school that a student with D must take their kit with them if they leave the campus for any reason. I could not be happier with myself! LOL ;-)

Emma started school with 3 hour days and we are just now starting to extend some of her days to include lunch, recess and afternoon activities. I am well aware that we have many challenges ahead, but I am happy to know that her school and teacher are much better prepared to keep her safe. Her, C and any other D child that happens to pass through in the future. School is a happy place for her filled with friends and fun and learning and music and only a few distractions from diabetes thanks to many caring adults. I couldn't ask for more.

 


 

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 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.

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.