So much to say...

Yes, there has been a little setback, but I have to say... even with the little setback, life is very different in this house. For the first time in a long time, I feel like I have been able to just ENJOY and APPRECIATE almost every moment with my children. Not that I wasn't doing this before... I was, but not nearly as much. Everything was just so stressful, and that has changed. In a big way. Am I certain why? Nope. Do I care? Nope. Well, maybe-sorta, so I can keep doing it. :) It brings tears to my eyes just thinking about it. I'm watching my little girl grow up before my eyes. She is being so helpful and sweet with her little brother, and it's been amazing to watch him grow up before my eyes as well. He is talking so much better, and it just melts my heart when he says new words in his sweet way. We've been having fun JUST BEING TOGETHER... playing, wrestling, talking, laughing, learning, singing, pretending, etc. Yes, there are still issues and lots of work to be done... but even my husband will tell you just how different the mood of the whole family is, and life just feels a bit easier. The diet sucks for various reasons, but it's not as bad as I thought it was going to be. I do have big concerns for the school-year coming up... but more about that later, or in another post.

There have been some other changes around here as well. I bagged the TSS idea, at least for now (and let me tell you, my daughter DID NOT take this news well. Big ol' angry, emotional outburst... hence there still being issues and work to be done). It was a complete waste of time. For us, anyway. Let me start by saying that the BHRS agency we chose has been WONDERFUL to us. The county director of this particular agency is FABULOUS, and to say that she has gone above and beyond what she has needed to do for us would be an enormous understatement. Our BSC is also really great, and I feel that her work with us has been the most beneficial. The TSS we were assigned was a really nice girl, and I do feel she was knowledgeable, and this is really nothing against her. It was just becoming TOO MUCH. I received some advice from a very dear friend as this was all starting for us, and she told me the following: "DO NOT feel the pressure/guilt to put your child in more therapies or over-frequent therapies than you can handle.  It's not good for anyone, and a lot of times, unnecessary.  I know you have the "mom" guilt to do ANYTHING you can to help the kids, and I can completely relate to that--you always are going to feel like you should be doing more.  BUT, that is not good for you, and if you are so stressed and pulled in too many directions, then you can't do anything well, including things for yourself to make you a happy mom, happy wife, happy person, etc...  I think this is true with ANY mom, but I think its more pronounced and important in moms with kids that need a little more." I reread this today and I feel even better about this decision. Our schedule was becoming CRAZY, and I seriously couldn't imagine how it was going to be once school started. Here was our SUMMER schedule:
Mondays- Speech therapy for our son- 1 hour
Tuesdays- Little Gym Camp for our daughter- 3 hours; TSS- 2.5 hours
Wednesdays- School for both- 5 hours
Thursdays- Our one open day, though very rarely open :)
Fridays- Occupational Therapy for our daughter- 30 min; TSS- 2.5 hours, Outpatient counseling- 1 hour

Add into that BSC meetings every other week, several different appointments, evaluations, etc... and things were getting a little crazy. With school coming up, this is how things would be looking:
Mondays- School for both- 2.5 hours, Speech therapy for our son- 1 hour, TSS- 3 hours
Tuesdays- School for our daughter- 2.5 hours; Gymnastics for our daughter (which she LOVES and I will not take away)- 1 hour, TSS- 2.5 hours
Wednesdays- School for both- 5.5 hours
Thursdays- School for our daughter- 2.5 hours, TSS- 2.5 hours
Fridays- OT- 30 min; Outpatient counseling- 1 hour
Oh yeah, and add in the very necessary exercises prescribed by her chiropractor to address her sensory needs, as well as the sensory diet and therapeutic listening prescribed by her OT, both of which I feel are extremely important.

Seriously... when was my kid supposed to have time to JUST BE A KID? I had to take something out, and honestly, TSS was just doing nothing for us. If you don't know what TSS is, it stands for Therapeutic Staff Support, which is someone with a bachelor's degree in a human service field. They typically are right out of college, in their early 20s, have no children of their own or any kind of experience, and this is often their first job. They are paid very little, and really don't have much training. I say this from experience, because believe it or not, I actually did TSS work at one time. The job sucks. And there is very high turnover because of it. There are some really great ones out there, but they are few and far between. We really liked the one we were assigned, but it just wasn't working out. She tried, but it was becoming very stressful for me, as our daughter wasn't responding very well, and things were actually worse when she was here. Umm... yeah, that is the last thing I need. Now, if she ends up needing one in school... which I hope and pray she doesn't... but if she does, then that's another story. Honestly, that was the only time as a TSS that I actually felt that I was providing a valuable service. So... that's that... for now.

Lots more to say that will have to wait for another post(s), plus even I'm losing interest at the moment. :) Thoughts on vaccines, biomed, the upcoming school year, GFCF diet, trying to balance being a mother, wife, and woman... lots of thoughts spinning through my head. For now I will say this... there are so many lessons I have been taught over the last several years,  one of the biggest I feel is to never pass judgment. We've all done it, and I have learned time and again to be careful what you think, be careful what you say, because you just never know until you are walking in that person's shoes. I am no better because I am trying biomed. I am no better because I am trying a special diet. I am no better than the mother who chose conventional medicine for her child, because as I've said before, if medication had worked for my daughter, I can guarantee you she would be on it, and on it for a long time. Really, we mothers are all in this together, and we need to remember that. I don't want to be judged by those who believe biomed to be a crock- i.e. alot of medical doctors and people in the conventional medical field, and I would never judge them if they were to choose to not pursue "alternative" therapies for their child. We need to support one another, not judge one another. I saw this the other day, and it spoke volumes to me...

Perplexed

That's how I feel today. I really can't seem to determine if there's a rhyme or reason to any of this. My big girl was doing SO WELL. Like, REALLY well, for a few weeks. Now, the increased anxiety was there (and still is), which sucks, but behaviorally... it was *almost* like a totally different kid. There were moments, sure... but she came out of them relatively quickly, and was just listening so much better. The impulsivity and hyperactivity seemed to be so much more under control.  Then... last Thursday night, she had a HORRIBLE night's sleep. She hasn't done this in a while, but she woke up around 3 a.m. and just COULD NOT fall back asleep. When she gets like that, she gets incredibly frustrated and upset, and she just cried and cried... screamed and kicked... she was just so angry. I did give her a little more "sleepy medicine," (melatonin) around 4 a.m. Apparently it wasn't enough to get her back to sleep, but was enough to make her feel just tired enough (on top of the lack of sleep) to be even more frustrated and angry. Finally around 5 a.m. I couldn't take it anymore, and she and I went downstairs and watched some TV, hoping that maybe she would fall asleep on the couch (she didn't). That is the day the behaviors started to escalate again. Friday was a horrible day behaviorally. She wasn't exactly out of control, but it was a pretty tough day. We were very proud of how she behaved on Saturday at the fair- she was such a big girl. We had such a nice time as a family... until we let her have that dreaded snow cone. Poor thing couldn't have any other treats there, so I thought.... ok, she can have a snow cone. Well, I should have limited the flavor choices, for one (no red dye ever again!!). For two, I should have told them to put on like 1/2 - 1/4 of the amount of liquid crack syrup they usually put on. HOLY SHIT. I have never seen a more obvious reaction in my life. Within 30 minutes of consuming that... thing... she turned into a crazy person. I am exaggerating a tiny bit, but not that much, really. I don't think it's all the snow cone's fault. I am blaming Saturday's post-snow cone behavior on it, but that's it. Everything else... I don't know what to make of it. I am truly perplexed. She's been off and on again... good hours and bad, good days and bad. GFCF is going pretty well... no huge dietary infractions.

Speaking of dietary infractions... I am feeling a little frustrated with this whole thing. I am not liking the answers I am receiving to the questions I am asking. I am basically being told by other parents that this certainly has to be 100%- all or nothing. I just don't understand. I need to do more research into what exactly happens in the body, but it's my understanding that PERHAPS she may not be able to digest certain foods properly- in this case we are removing gluten and casein to see if there's an improvement. What apparently happens- maybe in her case, maybe not, but certainly in some other children's cases- is that these undigested food particles/proteins then can enter the bloodstream and somehow are turned into toxins and actually morphine-like chemicals?? I don't know, something like that. So these morphine-like chemicals can cause all sorts of issues. So here's my thinking.... if you have 99% less gluten and casein than you were consuming before... wouldn't there be 99% less of the toxins in your body than were there before??  So WHY does it have to be all or nothing? I ask this because I am doing the best I can- but as I've said before, I am not Superwoman, and my poor kid is FOUR years old. Today, for instance, I received a call from her Little Gym teacher during summer camp, that she was eating goldfish crackers off of the floor and they didn't know what to do. I talked to her about this when I picked her up, and she said "I had my pretzels, Mommy... but I just REALLY wanted some goldfish crackers like the other kids." What am I supposed to do with that?? I can't be with her 24/7- and she has self-regulation difficulties as it is, plus she is FOUR- how can I expect her to be perfect all the time? I can't. We are doing the best we can. So I'm getting all sorts of advice about how to enforce it... but if you don't know my kid... let me tell you, if she wants something, SHE IS GOING TO FIND A WAY. So I'm frustrated. If this has to be all or nothing... well, then it's going to have to be nothing. That's how I feel today. I'm not stopping... I just want someone to tell me that all of this is NOT for nothing. That it's GOING to help, even if she eats a few goldfish crackers off the floor (gross, but whatever).

I also feel proud today. So proud of how well my sweet girl has been doing. So we've had a little setback and we don't know why. All summer she has been going to Little Gym camp- and this is the first day they have said to me, (today was her last day) "She had a rough day." So guess what?? That is THIRTEEN good days, and ONE rough day. I'll take it. :)

Update

Whew! So much going on lately, I'm not sure where to start. First, I think our family is finally on the road to recovery after this recent bout with a lovely (what the doctor believes to be) summer adenovirus. Each person developed symptoms 7 days after the last, and it seemed to affect all of us differently. The kids had high fevers, my son for three days, my daughter for five, and hers got up to almost 106! It was crazy. You know what I had, and my husband basically had the same thing I did, though his fever and sore throat were a little worse and lasted a little longer. Oh, well... I will still take that over a stomach virus any day (of which we had FOUR this past year)!!!

This past Monday, my daughter had a minor outpatient surgery to remove a three year-old tube from one of her ears. She had gotten tubes in both ears when she was 18 months-old due to recurrent ear infections/lack of drainage, and they typically will come out on their own in 12-18 months. One of hers came out after about 2 or 2 1/2 years, but this one just wasn't budging. When the doctor got in there, he found the tube to be completely non-functioning, filled with inflammatory tissue and "weeping" (gross). He removed it, patched the hole in her eardrum, then cleaned out the other ear, which was filled with impacted ear wax (runs on Daddy's side of the family). Anyway, not complaining, because her tubes served her very well. It was the right decision for us, hands down. My poor kid had a terrible several months with her ears after her first birthday... it got so bad that she ended up needing a series of Rocephin injections (nasty, but necessary stuff at that point). What I DO regret, however, is that I did not have her on a regular probiotic at that point. I often wonder if I had... would anything be different now? So many children like her have had ear tubes, infections, and/or other illnesses that required multiple antibiotics. This kills the good bacteria in your body, and can lead to other problems... diarrhea, yeast infections, etc... but multiple rounds of antibiotics without probiotic support can cause even more problems... read here for a basic idea. Both of my kids are now on daily probiotics- all the time, whether they are on antibiotics, or not. My daughter chews hers, and I crush it for my son and put it in his juice along with his multi-vitamin. If you do nothing else, put your kids on a good probiotic when they are on antibiotics... here is what we use: Klaire Ther-Biotic.

Last weekend was a total bust for the GFCF diet. I was so poorly planned... totally my fault. I was not feeling well, plus everything we did was very last-minute! Friday night was a preschool classmate's birthday party, (that I had just found out about that day, due to our address change) so I told my husband to just let her have whatever was there. She had a couple of bites of pizza, two small cookies, and a bite or two of cake. It could have been alot worse- she was way more interested in swimming, going down the big slides, and playing with her friends! Saturday, I sent the kids (again... last-minute) to Pap-Pap's family reunion with Daddy. We had been sick, I was feeling especially crappy, and I just couldn't deal. So she ate a bunch of stuff she shouldn't have had. We got right back on the horse on Sunday, which is all we can do... and even going to a baby shower, we did it! Woo hoo! I think that was really our first event to which I brought some of our own things and we were successful! I was lucky they had some plain fresh fruit and plain raw veggies (that Gaga made... THANKS, Gaga!!). I brought along some hummus for dipping her veggies and corn chips, as well as some cupcakes. Now, Monday... the day of her surgery, it was a bit of a traumatic day, so afterwards, I let her have what she wanted. She had half of a bacon, egg, and cheese sandwich from Starbucks, as well as half of a doughnut. Oh, well. But that was it. She had just had anesthesia and surgery, for goodness sake- I just wanted her to eat, and well... she just hasn't been eating that great (very much) since starting this diet, and especially while she was so sick, (she has lost 1.5 pounds :( ) so guess what... I didn't care at that moment. Again, right back on the horse for the rest of the day and ever since.

On that same note, we have noticed some changes. Whether these changes are related to going GFCF, or pure coincidence... we're not sure, yet. We really won't know until possibly doing food challenges after a few months. Whether these changes are actually positive changes... well, I'm undecided. To keep it very short... behaviors that seem to have lessened: frequency and intensity of mean, aggressive, outburst-like behavior. What seems to have taken the place of that: increased anxiety, fear, and perseveration about certain things. Honestly, almost OCD-like... there are certain questions she has to ask me over and over (and over and over and over) again, even if I keep giving her the same answer, and she KNOWS I'm going to keep giving her the same answer. It's really hard, if I'm being honest. It can be difficult to maintain a patience level that she needs from me. But I'm trying. I can do the right thing the first 100 times, then that 101st time, I lose my patience, which is obviously counter-productive. Daddy is doing a better job with this than I am. So... things are changing. What is causing these changes- who knows? Her symptoms and manifestation of underlying issues could just be changing. Hard to say.

And the biggest thing of all this week... her hair. :) She and I have been talking for a couple of months now about whether she wanted to cut her hair short, or not, and if so... what did she want to do with it, since there would be so much of it? I talked to her about donating it and what that meant, who would need it and use it, etc. Some days she was all for it, some days not. Well, on Monday, she finally decided she wanted it cut, and she definitely wanted to donate it! We found out about Pantene Beautiful Lengths from my sister-in-law, and for a couple of reasons decided on that vs. Locks of Love. Two WONDERFUL organizations... this was just the right choice for us. They partner with the American Cancer Society, and my daughter donated 8 inches of her hair in memory of her Great-Uncle Alex, whose loss to cancer devastated all of us over 5 months ago. I know he would be so proud, and happy that her beautiful hair would be going to someone affected by cancer and chemotherapy. She said, "Uncle Alex can be the angel who decides where my hair will go." Amazing.

Motherhood... the gift that keeps on giving

Today can suck it.

First, this is a lovely gift I received from my daughter:

Apparently my eyeball caught her virus from last week. Virus- you can suck it, too.

Next, the cookie fiasco. Let me start this by saying I LOVE my kids' preschool, I really do. This is also Vacation Bible School week at their preschool, and a sister church offered to do VBS for them, since they recently went through a transition and it was just too much for them to organize at this point. So the preschool director wasn't really in charge of what was going on, but was relaying information to me to the best of her ability regarding an activity they were doing involving cookies. I call an awesome local natural foods store to make me a big, fish-shaped, GFCF sugar cookie. She tells me she will make me a vegan one. OK, great. I hear from the preschool director... they actually need 3 cookies, one with a hole in it (long story, Jonah and the Whale, Jonah is going to be a gummy bear in the center of this giant cookie sandwich). Bakery is closed for the day. I leave a message. Fast forward to this morning... no one is picking up the phone at said natural foods store. They answer at 9 a.m. when I am in the car, on my way (oh yeah, and school starts at 9, by the way). She made me another fish-shaped cookie with a hole in it, but ran out of vegan dough to make the third cookie. She does have other dough that is GFCF but it has egg in it. No problem with egg, perfect- make me another cookie. She said 6 minutes. I get there in 7. I wait 10, maybe 15 minutes, after I get there. Cookie's done- yay! We're on our way to school- already 40 minutes late. Oh, did I mention my son's speech therapist is there waiting for us, too? We get to school, I throw my son's stuff in his classroom and rush to my daughter's cookie activity with her. We had already missed the whole story about Jonah and the Whale. The class had just finished eating their damn cookies. Are you freaking kidding me? So while her class stands there watching us, she and I hurry up and throw some icing on her cookies, she's crying she doesn't want me to leave, snot running down her face, takes 2 bites of her cookie, then - "Mommy, will you save this for me for home"?  

Yep, today can suck it. Well, the morning can, anyway. Now I have 2 very rare hours to myself- woo hoo! I was planning to get a pedi, head to Med Express for someone to look at my eyeball, and make a grocery store run. I think I'm just going to put my daughter's eyedrops in my eye and read a magazine instead. 

*Update: Kicking back with 2 hours to myself did not happen. Instead, realized I had a fever and went to Med Express. 3 prescriptions later, then time to go get the kiddos! :)