Dr. Rush

I went in this morning to talk to the Psychologist about the kids and set up an appointment for my Psych Evaluation for my surgery. I got there an hour early, cause I left early thinking it was going to be hard to find...it wasn't.

I sat there in the waiting room chatting with the other patients and the Receptionist, who was completely fantastic!! I love his Receptionist, she was so sweet and funny. And very possibly a bit overworked, hahaha!

Dr. Rush is amazing, except for the fact that his name fits his sessions. LOL You feel a bit rushed and like you may irritate him a little if you run long in your explanations as I normally do. But other than that, he was super easy to talk to, he listened really well and he made me feel comfortable. Maybe a little too comfortable actually, as I let a piece of very personal imformation slip to him before I even realized what I was saying. Oops! o.O Oh well. I'm sure I'm not the first nut to ever sit in his office, haha!

So I told him all about the girls...in depth. And then we scheduled an appointment to bring our entire family in to see him, so he can see how they (and we) interact with each other. Then I told him about my upcoming surgery and how I needed to have a Psych Eval done and that I'd love for him to be the one to do it. So he let me sit right there and he did it on the spot! I was lucky his 1pm appointment was a no show. :)

So I got my Psych Evaluation out of the way. One thing down, 6 more to go. I am on my way to joining the "Losers Bench", I can't wait! And, I think I am leaning a little more toward the sleeve, btw. Have to do a bit more reading and researching, but that's sounding like the one at this point in time. ;)

Tonight, I made grilled lemon pepper wings and grilled honey bbq wings (for the kids), with yellow rice topped with mango, steamed broccoli and raw baby carrots. I was surprised at how much everyone loved it! I'm definitely gonna have to make that one again, but next time, maybe with thin chicken breasts, or a bigger batch of wings. Everyone wanted more and there was no more. It's so very rare for us to all find a healthy dinner that everyone loves. I'm glad they liked this one. Clara ate her broccoli raw of course, but man, I am just glad she ate it. She's been eating raw broccoli like crazy this week.

After dinner, Clara and I went for a walk around our lake. Mary walked around the block because she can't make it around the lake, (She whines, big time!). All the around our lake from and back to our front door, is 3 miles exactly. We took a longer route and walked about 3.5 miles, which took us 2.5 hours. We did stop to take pictures along the way though. Actual walking time was probably about 1.5 hours. We kept up a pretty nice pace, with a few slower paced breaks for me of course. She's a stink pot! Every time I would need to slow my pace a bit, she'd laugh and say, "You wanna race?" Brat. We took some really pretty pictures, but my favorite is one we took of us together by the lake. I don't get to have pictures of us taken very often. I don't even care that I was sweaty, red faced, and fat. LOL 

(Me and Clara)

(Pictures we took at the lake)

                                     

This was a great day!! :) Kat even got to go to our neighbor's house to play in the sprinkler with other kids. It was fantastic! :)

(Look at the look on Aiden's face! LOL)

My Appointment

I had my first consultation today with my surgeon for my Weight Loss Surgery, (WLS). The wait was horrible. We got there around 10am, my appointment was at 10:30 and I was told to be there 30 minutes early. I wasn't called to a room until a little after 12pm. o.O Not a great first visit as far as that goes.

Once I was called back, I was weighed, blood pressure taken, temp taken, etc... They gave me the option to have a print out of my weight sheet, which told everything from my weight to my BMI to my water percentage, and finally my goal weight. Their goal and my goal are completely different, lol. The sheet said 165lbs, but that's no good for this Momma. I'm going for at least 135, possibly 115. I have been this big fat girl my whole adult life. I'm not about to undergo this life changing surgery and not take complete and total advantage of it. I want to be the woman that walks down the street and all the husbands turn and slap their wives. LOL!  ;P

No really, I want to be healthy. I want to be able to run and play with my babies and I want to be here to see them become adults. Of course after being this big for this long, I want to look nice too, but my driving force is my kids and my health.

We talked quite a bit and had a short Q&A, and then she handed me two manuals, one for Gastric Bypass and one for the Sleeve. They are leaning toward the Sleeve for me, with the ultimate decision left to me. I'm not sure yet which one I'll be going through. It's a good thing I'm in like 20 support groups on FB for this surgery, lol. I have 6 months to figure it out, as I have to be on a monitored diet for 6 months first for my insurance to pay for it. I'm sure I will be at least closer to a decision by then. Gotta wait and see who has what complications with which surgery, lol

I have to go back for lab work, my consultation with my Nutritionist, and a stress test. Then I have to get cleared by a cardiologist.

I haven't really received much support from family and friends thus far, but I don't care. This is for me and my kids. I'm moving forward so that I don't continue how I have been going and end up dying young due to a heart attack, stroke or cirrhosis of the liver, (I have NASH which could lead to cirrhosis).

I am nervous and anxious and so so excited all at the same time.

And just to let you know exactly why I need this surgery...I am sitting here typing this about this surgery while eating a second helping of beef tips and rice. :/ I'm drinking water though. :)

And yes, I know that I still have to eat right and exercise after surgery lol, thank goodness I will have a tool to help me do just that, right?! :P

-------------------------------------------------------


The girls are doing good today. Clara was even able to go play at her friends house for a few hours tonight. Mary's a little sore, so she stayed home, but she's doing better. Her attitude is another story...

Kat has had a rough day as far as her behavior goes. I'm not really sure what's going on. It's literally as if a switch is flipped from day to day. :( I can't wait to get her to her psychologist. I just want her back to her old self. </3

Aiden had a blast tonight. He found a toy drink pitcher outside next to his water table and a light bulb went off. He filled it up and threw it on my Mom. LOL! That started an hour long water fight. He's a mess, lol

I love my kids. I am so thankful for all of them. <3

(My little man after he got soaked from his little impromptu water fight, lol)

New Doctor's Appointments, A Good Day

We had Mary's second appointment today. Dr. Vega said she does not believe it is Systemic! :D We are very happy about that. She diagnosed her with ERA/JIA. (Read the following link for more information on what this means.)

What is ERA/JIA?

I love that they get us back quickly, they are now being friendly to us (the nurses, all but one who just seems to be miserable with life and stays in a perpetually bad mood), and that Dr. Vega does a physical everytime she sees Mary. She also listens to us and has no problem explaining things, which I love in a doctor! We need more that are willing to do that.

So after seeing Mary and diagnosing her with ERA, we talked about medicine. Dr. Vega and Mary decided on the tablet regime vs the shot. Mary wasn't exactly up for more pain, no matter how small. So she will be taking:

Leflunomide (20mg/day),
Prednisone (20mg/day),
Meloxicam (7.5mg/day),
Rantidine (75mg/day)
and a daily D3 vitamin.

I'm hoping that Dr.Vega will be referring her to her OT soon, but I totally forgot to even bring it up this afternoon. :/ Next appointment then.

I made it a point to check Clara out of school with Mary today and take her with us to see Dr. Vega. I just couldn't fathom waiting until August for Clara to be seen by her. Clara was hurting today, so I wheeled her into the exam room with Mary. I told Dr. Vega that Clara was being looked at for JIA as well by her Pediatrician and had been referred to her. I told her that they gave us an August appointment, and expressed my concerns for her having to wait so long. I do not want her ankle to lock up as Mary's wrist did. She was in agreement with that and said she will give Clara an emergency appointment, hopefully in the second week of May. I would be jumping for joy and happy, but I will wait to exert the energy when I get the call with a new date. I do appreciate her being just as concerned though. I wish she had looked at her today, but I understand she is very busy. She was having to sneak bites of her lunch in between patients already. :(

Kathryn was a mess today. As was Aiden, (Our two year old son). I won't be surprised to find out in 3 years that Aiden has ADHD as well, I'm telling you what. Those two individually are a handful, having meltdowns at the same time is more than we can handle even together sometimes.

I took Kat off of her sleeping meds over the weekend, (I can't remember if I wrote that on here or not), because it was making her night terrors worse. So I just gave her a break over the weekend. I don't know if that had anything to do with the horrible behavior the last part of yesterday and all of today, or not, but tonight I gave in and gave her just her Clonidine. I am part of ADHD/Autism/ChildAnxiety Support Groups on FB and I had a lady tell me that her child got worse on both meds together too, but she did great on just the Melatonin. So tomorrow night we will try just the Melatonin. She has already woken up once tonight crying. It was easier to get her to calm down and go back to sleep though, which was nice.

Clara and Mary have both been hurting badly in their backs, their ankles, their knees and their hips, as well as having bad headaches. Their pain level most days has been staying between 5-10, mostly it's on up there. That's why they changed Mary from Naproxen to Meloxicam. The Naproxen just wasn't helping anymore. She was getting upset because she had to take it and it was pointless to her. I really hope this new medicine helps her.

The girls all have a day off from doctor's appointments tomorrow! I don't know how it happened, lol, but they do. A full day of no one poking, or endless questions. Tomorrow is Mommy's turn. I have my first consultation with my Bariatric Surgeon. I'm excited and a bit nervous. I'm not sure what to expect. I think that I've just grown so used to it being the kids going to the doctor, that I'm kind of anxious about it being me, lol! Ah well, it's the beginning of my new self. :) I can't wait.

I have started pressing shirts again. I made one for Mary to wear today, one for Kat (she also wore it today), one for Aiden, one for Clara (hers is for Field Day and has her school name on it, so it won't be posted here) and one for me to wear tomorrow and then another to wear after my surgery. I'll post them here.

(My shirts, obviously)

                                     

 (Aiden's Hulk Shirt)

 (Mary's JA Shirt)

(Kat's ADHD Princess Shirt)

I really enjoy making shirts. I'm glad I did these. I hope I can pick it up again. There are lots of kids out there that I'm sure would love to have a shirt that speaks for them. :)

Normal Pre-Teen Stuff or Pain Attitudes?

Mary has become very irritable lately. She is snappy and short with everyone, well everyone here.

Clara is the same way.

They are fighting and arguing over everything, and I do mean everything. In Clara's defense though, Mary does enjoy butting in on things that aren't her business and she does love to correct Clara or try to seem like she is doing things better than Clara.

But even when Mary is not doing that, Clara will snap at her for saying just about anything.

Mary is usually my helper, my laid back chick. She is usually fairly sweet, at least to me, and she hasn't been recently. She doesn't want to do anything. She complains a lot. She isn't grateful for the things she has.

And it just goes on and on for the both of them.

Clara is doing this thing now where she complains a lot. She only half listens and ends up in trouble for not following simple instructions, (That's actually been a long standing issue though). She talks back, she rolls her eyes, she scoffs at me and her Daddy. She is extremely irritable and touchy and annoyingly sarcastic.

I can not decide if it is normal pre-teen attitude, or if it is related to the both of them being in pain all of the time. I have to guess it is probably a little of both, right? I mean, I know that if I am in pain, I am kind of snippy too. Or a lot snippy, actually. So I am leaning toward that being the answer.

However, there are some days that I can see they are doing good as far as the pain goes, and they are still being bratty. Those days I am going to blame changing hormones.

I think we are officially entering the phase I have been dreading... the preteen and teen rebellion years. Ugh!

I am not equipped to deal with this, and I know it. I'm calling God in on this one, seriously. I know He's up for the task. lol

These girls drive me nuts most of the time, I love them to pieces and wouldn't trade them for anything, but sometimes, just sometimes, I wish I could tape their mouths shut and not get in trouble for it. :P

Really though, they have both been hurting a lot lately though. They are taking their Naproxen, but it's not lasting like it should be. They are both complaining of back pain, and of course Mary's right wrist always hurts. Clara has also been having a lot of pain in her left ankle and knee.

Mary has an appointment with her Rheumatologist on Tuesday and Clara, being new, doesn't have an appointment with her until August 23, 2016, the day before her 12th birthday. I asked them why they schedule new patients 4 months out, and she tried to convince me it wasn't on purpose. It just so happens that they also scheduled Mary 4 months out for her first appointment too? *sigh* I don't believe them for a second.

I told her that while waiting for her first appointment, Mary's wrist became immobile. She didn't care.
I sure wish we were still in the days of, if you have an ailment or complaint, you go to the doctor's office and sit and wait until he sees you. We don't have that option here, or we'd be there from sun up to sundown.

I hate my babies being in pain. :(

This is REAL

I am a highly emotional person. People love to tell me that I'm "too sensitive" or "take things the wrong way" when they have said something out of place or something offensive and then get a response out of me that might not be the best way to handle it from my side of things.
I find it funny when people do this, not funny "haha" either.

With that said, I made a post the other day (On FB) about how much I wish we had a school, here in our hometown, that was just for kids with ADHD/Austism (on any level). I have had some negative experiences with the school that my daughters both attend, and that will be Kat's school for her elementary years. While it is a fantastic school, it has some less than desirable teachers in it. We have had some really ugly experiences with some teachers there. Clara's (my oldest girls) Kindergarten teach traumatized her so badly, that she stopped talking altogether for an entire year. That same year, she turned inward and has never recovered from that. She developed horrible social anxiety, and actually her entire personality just kind of underwent a change that has lasted until now, and she's about to be 12.

And Clara is my strong child.

Kat is emotional, she is sensitive, she's not as strong. So when someone yells at or around her, raises their voice to her or around her, she wilts, badly. She panics and it causes her anxiety, sometimes putting her into a panic attack. I know from my own personal experience, the teachers at our school yell and scream sometimes at students. I have witnessed it myself walking through the school. They are harsh and outright mean to those students. They treat them like nuisances and like prisoners instead of like children.

Me saying that isn't me saying that all teachers are like that. I understand that they put up with a lot. However, they knew they would when they went into that career and if they can not handle other people's children with dignity and grace, kindness and understanding, and with patience, they need to find new career paths.

-Don't stand in the cafeteria screaming at a kindergartner because he asks you which bathroom he can use because the one closest to him right now is locked.
-You don't push a small child back in line and yell at them, embarrassing and demeaning them in front of their peers.
-You don't get frustrated and grab the handles of a child's wheelchair and move her so harshly, that you bump her hurt hip and wrist into the metal bars of the wheelchair, because she was unable to get herself into the exact position that you wanted her in.
-You don't get in a 5 year old's face, screaming at her because she isn't sitting in the color block on the rug that you told her to sit in.

I have witnessed all of these things. So when I say that I would like a school where the teachers are trained to handle children with behavioral issues, that's not me putting down teachers just to do it. I have my reasons.

Now, in all fairness, we have some exceptional teachers at our school as well. We have teachers that if I could, I would adopt into my family. :)

Teachers that are patient and kind, helpful and understanding. Teachers who are there because they actually love teaching children and they love to see the kids flourish. Teachers who understand that not all kids are the same, they do not all learn the same, they do not all behave the same, they do not all respond to the same types of disciplines. These teachers are real teachers. They are there for all the right reasons. I am forever grateful for teachers like these.

My other issue today is that some people may be questioning me on whether or not Kat has behavioral issues at all. o.O

I have had this happen once before with other family. They didn't believe me either. Until they spent more time with her, and saw it for themselves. Then all of a sudden it was, "We really need to work something out here." or "You really need to talk to her about *insert behavior issue here*.

Kat has shown signs of not only ADHD, but also some type of Autism as well. Whether it is HFA (High Functioning Autism), or ASD (Austism Spectrum Disorder). She also has signs of anxiety and panic disorder and she has really bad night terrors. These things are all very real and present.

My favorite thing in the world is to hear, "She doesn't act that way when she's with us. maybe she's just acting out for y'all." :/

Really? Ok, that's hurtful.

I am with this girl every single day. I know what is there and what isn't. I know there is something more going on than normal acting out and/or ADHD.

Not that I need to give this information, but here it is anyway...

These are some of Kat's symptoms:

1. Trouble getting to sleep on her own, sometimes until 1-2am.
2.  Trouble staying asleep.
3. Waking in fits. Night terrors. 
4. She was fully potty trained, after lots and lots of grief, at the end of two years old, never an accident. In November of 2015, she went backward and started having accidents. Often.
5. She has trouble controlling her impulses. She is clueless to dangers. (Ie. running out into cars, climbing unstable structures, jumping from places that she should be scared to jump from).
6. She has terrible fits and outbursts, meltdowns if you will. Over things that wouldn't normally bother someone. (Ie. the cheese from my burger is touching the box). These can last up to an hour at times. And she can not help it.
7. She self harms. She bites herself, pulls her own hair, she claws herself, scratches herself, pinches herself, etc..
8. She hurts us as well. She pinches, claws, bites, scratches, kicks, punches, etc.
9. She has bad mood swings. She'll be happy one minute and sad or angry the next. A lot fo the time without a visible trigger. 
10. She throws things.
11. She interupts conversations, even when being told not to do so. She has to do it anyway. 
12. She doesn't seem to understand or listen when being corrected. 
13. She can not be told "No", or it's an instant meltdown.
14. Bad anxiety and panic attacks.
15. She has irrational fears. Something very minute, can turn into something huge in a matter of seconds. Like there's a ladybug on the swingset, can turn into a huge breakdown and turn into a dramatic panic attack. 
16. She has trouble getting focused and staying focused. Unless it's on electronics. 
17. She has always had light, sound and smell sensitivity. To the point that if something smells bad to even only her, she throws a fit until you make the smell go away. If a light is too bright, again only to her, she will make a scene until the light is turned down or off. Sounds that seem normal volume to most everyone else, will throw her into a panic attack. 
18. She has trouble settling down. She is super hyper. Her body has to be moving, all the time, even if she's asleep. 
19. She has trouble learning from her own experiences. She repeats behaviors that have gotten her hurt, even if it was just seconds before. 
20. She is highly prone to injury. 
21. She tells lies. 
22. She makes up elaborate stories, and it's not like normal imagination type stuff, it's things that she seems to believe and if you correct her for any reason, it's an instant meltdown. 
23. She tells stories about other people. It can get very scary at times.
24. As I mentioned above, she only seems to be able to focus really well on electronics, sometimes art as well. 
25. She is extremely disruptive in most situations.
26. She says we don't love her or that we don't listen to her, even if we are doing all we can to prove otherwise. Or even if we have exhausted all efforts to remedy whatever situation at hand for that moment. 
27. She has always been an extremely picky eater. She has a horrible texture sensitivity.
28. It's a big deal trying to get her to try anything new, as far as food goes. And sometimes with activities as well. 
29. She has always lined things up in a row, or stacked things a certain way. If you move anything, even a little, even on accident, it turns into a huge meltdown and she has to fix it right away or she can not focus on anything else. 
30. She doesn't do well with change. 
31. She always has to have her blankie with her and she sneaks other small toys and stuffed animals places we go. 
32. She goes completely blank sometimes when getting in trouble or just being told how to do something differently. She just stares off. 
33. She has always had trouble looking in your eyes. She watches your mouth instead. If she looks in your eyes, it's for just a split second and she has to look away.
34. She has huge overreactions to bumps, cuts, scrapes, or bruises. 
35. She has trouble waiting her turn or recognizing that it is someone else's turn. 
36. She sucks on things. Her blankie, her clothes, her socks, her hands, pillows, towels, fingers and hair.
37. She has always quoted movies and shows, even when playing alone, under her breath, she will be quoting movies or shows, or songs even. She uses them as responses to you at times. 
38. She makes sounds in her throat or with her mouth when you talk to her.
39. She started talking at 4 months old and stopped suddenly, right after vaccinations. We thought it was the vaccinations at the time. 
40. She is very smart, academically. She has a very high vocabulary. She has from a very young age.
41. She's unusually clumsy. She bumps into things a lot even if there's room to get through without doing so.  
42. She has trouble recognizing that things belong to other people. Huge fits come on when she takes something she knows belongs to someone else, but she has claimed it. (She's old enough to know better by now)
43. She steals. 
44. She runs instead of walking, almost everywhere.
45. She falls, a lot. Even when standing still on a flat surface.
46. She bites the inside of her mouth and tongue, while sitting still, doing nothing. And has huge meltdowns over it.
47. She doesn't seem to fear things that most kids her age would or should. 
48. She is very quick to anger and frustration.
49. She has trouble handling stress or stressful scenarios.
50. She blames everyone else for things she's done, even if she knows we know better.
51. She needs constant reassurance.
52. She is very forgetful and gets lost with simple instruction. 
53. She has trouble understanding when we are joking with her and will have a meltdown if we joke with her about something simple. She thinks everyone is always literal.  

Some of these things, some people will say it's just her age, it's normal behavior. I know otherwise. These things separately, may be seen as normal behavior, but together, and as often as they happen, we know it's more.
I would never make something like this up to put a label on my child for no reason. I have known something wasn't quite right from shortly after her birth. When she wouldn't respond the way my other girls did at that age. She didn't laugh at things, she didn't smile when other babies would be smiling at something. She was just blank to most things. I knew then. I just didn't know what.

I knew something was there before I even knew about ASD or HFA, or ADHD. It wasn't until I learned about these things that I could put a name to what it was, but it was always there still. With tons of research and talking to other parents with children like Kat, I have been able to narrow it down to a few things that she could possibly have. I won't know for sure until she gets in to her appointment with her Psychologist. But for now, I am her mother, and I know something is going on. I am not making my child a victim or enabling her to act out by claiming her disease is the root of everything. However, for most parents of these children, we do know and recognize that they think, act and feel things differently than our neurotypical children do. They respond differently to things, actions, sounds, and behaviors around them. They can not be parented exactly the same. They are in fact...different. And until that is acknowledged and recognized among the majority, things for them and for us, the parents, will not change.

They do not need more discipline. They do not need to be spanked or slapped. They do not need to be yelled at, (even though some of us falter under the pressure sometimes and do so still), they do not need to be told they are acting or making it up, and neither do we. These children live in a very different world, inside of this world. They aren't just playing the victim or being made to play the victim in hopes of gaining anything out of others. They can not help the way they are. And they ARE different. That doesn't mean they're bad or wrong, or that they are lacking in any way. That just means they learn differently and they respond differently. And yes, people should act accordingly. You wouldn't walk up to someone who is visibly handicapped and push them down, telling to stop acting and act normal. Why would you do that to someone with ADHD/ASD/HFA, etc...

Just because something cannot be easily seen, doesn't mean it's not there and that it's not very real.

My daughter is smart, she is articulate, she is beautiful, she is loving and kind, but on the other side, she has troubles. She doesn't process the same as other people. Her mind works differently. I promise I am not making things up for her, and it's very hurtful for someone to insinuate that I am, even if that's what intended or not. There are several people who are around her that can attest to everything that I am telling you is true. :)

This is real. She is different. And that's ok.

Saying Goodbye

Today was not a good day for our family. While it was great to see everyone, to hug their necks and tell them how good it is to see them, it was not in the best of circumstances.

Today we came together as a family to say goodbye to my Aunt. I'm not going to give names here because my family is a lot more guarded of their privacy than I may be. :/
I will just say that we loved her very much and she will be greatly missed.

I just kept thinking of when I was a little girl and we'd get together for holidays, birthdays, etc. She was always smiling, laughing, cracking a joke. Her laugh was fantastic... If you ever heard her laugh, it's with you, forever.

She was always great to us kids. She always made me feel like there was nothing I could say or do that would change her love for me, and she definitely made me feel loved.

One of the hardest things for me today though, was seeing my Grandmother there in my Aunt's face. I hadn't seen my Aunt in some time, life just kind of has a way of getting in the way of keeping in touch, unfortunately. So I wasn't aware of how much she had come to look like her mother. My heart hurt.

My grandmother was one of the most influential people of my life. And even though she was only there with me for the first part of my life (she wasn't really "there" for most of my adult life due to health troubles), she is with me every single day. I can still hear her voice, smell her perfume, hear her laugh, see the look she got when she wanted me to know she meant business, and if I really think about it, I can still remember what it felt like to hug her neck. But the one thing I will never forget or have to go very far in my memory for is what it felt like to be loved by her. And I have no doubt that she loved me, very much. I miss her so deeply and wish every day that she was still here and could have gotten to know my babies. I wish they could have had her in their lives, and had her influence in their upbringing. My Grandmother was an amazing person. As are her children.

So I kind of had a little bit of an internal meltdown today. I am sad that my Aunt is gone, but I am so happy to know that she is with her Mom again. I know that that was one heck of a reunion. :) <3 I look forward to the day that I get to see them again.

Waiting Sucks

I have an appointment to see the kids psychologist on the 28th of this month. He said he sees the parents first. And that's great, I'm really glad he does it that way, but the waiting part for him to see them, sucks. I need his help with these kiddos of mine. Clara needs his help, I swear y'all, the more I look into this stuff, I think she could possibly have ADD like me and Johnnie. She has most of the symptoms. I know for a fact that she has social anxiety, badly. And she isn't very open with us about things she's going through, so I'm hoping she will be more willing to talk to a doctor, one on one. I know it's going to take time for her to be comfortable enough to really open up to him, but I hope she will in time.

Kathryn needs to be diagnosed, like yesterday, so we can get her the help she needs. I know the psychologist is going to help her tremendously. I saw a video on FB tonight that had me in tears. It was Kathryn. Not really Kat, of course, but it was how she has fits. It broke my heart to watch. My heart broke for the child and her Mom. This is such a difficult thing to battle. Mostly because we are both so helpless in doing so. You really just have to ride it out and hope for the best outcome. You can't control it for them and they certainly have no control, so you're really just left grasping for anything that can help. I know Kat also has High Functioning Autism, I just know it. If he doesn't diagnose her with it, I will be floored.

Here's the video. Keep in mind, this is what we go through almost daily at one point or another.

Autism Meltdown

It's so sad what these kids go through. And it's super hard on us parents as well. No one ever wants to be helpless when it comes to their babies. And when you find yourself in that situation, you just feel lost and worthless. :(

I am so ready to just know. Not knowing if you're right, or what is going on for sure, 100%, is emotionally exhausting and can really just tear you down.


These are pictures that Kat drew on the bathroom doors a while back. She started making us come to the bathroom with her in November 2015. It has only gotten worse since, she has become more adamant about it over time. Well the other day we were in there and she showed me her drawings. I had seen them of course, but this was her first time introducing me to them. She said to me, "Look, Mommy. I drew these here so that there would always be someone in the bathroom with me." :)

Ready for Next School Year

So one of the many things that I have been stressing, one of the biggest contributors to my stresses lately, has been whether or not the girls would be accepted into their first choice schools for next year.

Marian applied to Ga Connections Academy and Clara applied to Impact. We have been going round and round with GC over documents and forms being the right ones, or filled out properly, state tests scores not being in yet, etc...

Impact was just stressing me out because I know so many people are trying to get in there and their cap was very low. So when we hadn't heard back by the date they had originally said, I was freaking out. I'm not even gonna lie, I was a nervous wreck. LOL

In the past two days, we have gotten an acceptance letter for both girls! They are both in their preferred schools for next school year!! :D

Kat is going to be going to a school we already know we love, so we are good as far as she goes. (I hope anyway. We are new to the whole ADHD thing.)

We did allow her to choose not to continue going to her Preschool though. When she left her original Preschool, she was thriving, she was doing wonderfully. She had had a few sketchy run ins with a little boy that was terrorizing the class, including the head teacher, (who eventually had to leave due to her director not backing her when it came time to talk to this child's parents), so we took her out of that school not wanting her to end up hurt by that little boy and not protected by the director. (He ended up running a few more kids out of the school for the same thing and worse, and was still protected by administration.)

But anyway, when she started at the new school, she started going downhill. Her ADHD got much worse, she started wetting herself and soiling herself as well, after being fully potty trained for 3 whole years with zero accidents ever. She started getting depressed and more irritable. She started having worse night terrors and her self esteem started suffering badly. She comes home upset constantly, telling us how the teachers were being mean to her, yelling at her, calling her names, saying mean or bad things about her, punishing her for stupid things, and how they would do nothing when the other kids were picking on her or hurting her. I have witnessed a few incidents myself and so has Johnnie. This morning, we were eating breakfast and Pawpaw said to her, "Boy, you really tore that up" or something to that extent, talking about how well she ate her food. She hug her head and said, "that's what my teachers always tell me, "You're a nasty eater Kathryn!" That was it for me. I told her right then and there, if she didn't want to go back to that school, she didn't have to. Now I know that most people will say that we need to make her stick it out and that we aren't doing her any good by letting her leave, but this is my baby, and she's only 5 years old. She has endured enough from this school and it's faculty to make her almost completely regress on her potty training of 3 years, she has suffered personality changes that are significant and it's just not worth it. She is not required to do Pre-K, as I had wrongfully thought prior, so it's not a big deal. I will take the rest of this year and this summer to try to build her up and get her ready for Kindergarten myself. I want her to be happy and secure again. She definitely doesn't need to be let down or be disappointed by people she trusts and/or depends on anymore. She's had enough of that already in her short little life. Time for her to be happy and healthy and time for her to thrive again.

We went today to get her address affidavit for our County and were told we'd have to come back May 2. So we had a tiny little set back, but we will get it done and she will be ready for next school year. I hope I can get her excited about school again, like she was at her previous Pre-K. Please keep her in your prayers as she makes this transition. She's not really good with change.

Next year is going to be great.

Whiplash

This morning I woke up excited that today was the day I was going to try out a brand new, healthy beef and broccoli recipe with my family for dinner. It was a slow cooker recipe so I had to start it kind of early. When I went to put the ingredients together in the crock pot, I noticed that the container of beef broth I had purchased, had the silver safety tab broken underneath the twist cap. Y'all know I'm not about to serve that to my family. So I headed out with Johnnie and Aiden to go get a new contained at Publix. And then we'd just swing over and pick Kat up from Preschool on the way home. Well, right before we got to the Publix driveway, a car stopped, hard break, right in front of me, I had to do the same, I didn't hit the car in front of me, because I had plenty of time to stop, but the car behind me had been riding my butt and as soon as I hit my brakes, he hit right into the back of us.

I drive a 2004 Chevy Tahoe, he was in a little sedan. His car didn't make it. I instantly pulled off the road to the right and he pulled into a parking lot to the left. He got on his phone and was cussing me up and down to whoever he was talking to. I couldn't believe it. 

I was shaking all over. My mind was all over the place. I was feeling a bit light-headed and queasy. I also have Solar Urticaria, meaning I'm actually allergic to the sun, and at this time of the afternoon, it was blazing and I was breaking out in hives all over. It wasn't a good afternoon to say the least.

So I moved us over to the parking lot as well and call the Police. When they got there, I got out and told him what had happened and then he went to talk to the other driver. The other driver tried to tell him it was my fault. He hit me, but it was my fault. o.O Ooook?

So anyway, I saw him hand the other guy a yellow slip, I think he was ticketed. I'm not certain, but I wasn't ticketed and was only handed a small white card with the officer's name and our case number. Johnnie says we are ore than likely headed to court. Court is scary. I don't want to go to court. :(

When we finally pulled out of the driveway, I started hurting really badly in my shoulders, neck and my head was killing me. I didn't want to go to the hospital if it wasn't really anything, so I waited a few minutes to see if it was going to stop and it only got worse. I ended up in the ER anyway with whiplash. He hit into the back of us doing about 40mph. And even though we thought we were ok, I guess once the shock of the accident wore off, I found out I wasn't. I am hurting so bad right now. Johnnie went to pick up my prescriptions, but I already took 4 Ibuprofen tablets and all it did was softened the headache. My shoulders and back are still hurting.

Hopefully I will feel better in a bit and I am praying I wont hurt worse tomorrow, even though the doctors said I will.


On a different note, Mary's facial rashes have been pretty steady, but not every single day and she hasn't been running a fever, although I am highly suspicious that my thermometer might not be working properly, because sometimes when they feel warm to me, the temp read 96 or 97, and I know that can't be right by how their skin feels. But who knows? I can't afford a new thermometer, so we will just deal. Her rashes have also spread to her inner thighs now as well. Not sure what that's all about. I'm logging it though and will discuss it with her Rheumy next visit.

Kathryn is doing much better lately. She is starting to learn that she has ADHD and while she can't always help or control her actions and reactions, like her fits and outbursts, she knows she can not use it to her favor and she's learning to give a little more on the listening side of things. We're still struggling with tantrums and her fits when told no about something, but I'm also learning how to talk to her in a way that gets her to listen and understand why she's being told no. So let's just say, we're working on it. Kat had a facial rash this past week. Her cheeks were a bit pink and she had some bumps around her mouth. I don't know why, but I logged it in her medical file here at home anyway, just in case.

(Kat's rash. Pink cheeks and bumps around her mouth.)

Clara has been really complaining about her joints hurting the past few days. This afternoon, she was in the restroom at school and her knee gave out on her dropping her to the floor. :( Sound familiar? This same thing happened to Mary in the beginning. :( He left wrist is hurting her too. So Mary's is predominantly on the right side and Clara's is on the left. But it's Mary's left ear going deaf and Clara's right....little oddballs. :P

*Update* The dude that hit us didn't even have valid insurance! :( 

A Discussion with Ms.Kathryn

The day before yesterday, I was on Facebook looking around the page for the ADHD support group that I'm in and I found some posts from parents that were asking about how other people's children behave, things they do, tics they have or don't have, etc....and it got me to thinking. I talk to other people, mostly other parents of ADHD children, I talk to doctors, nurses, Johnnie, my other kids, but I don't really talk to Kat about her condition.

And that's just silly. So I decided to record me asking her about some of the things she does. Her responses are quite intelligent and impressive, although not 100% truthful, LOL.

But here is the video of us talking... Take a minute and check it out, she's too cute!!

Kat and Me Talking

A Long Day

We started off the day with yet another doctor's appointment. At least this time it was closer to home. We had to go into their Pediatrician's office for all 3 girls. Late last night, Mary came in complaining of a rash in her palate. She said it was bumpy and irritating. I looked and saw a yellowish discoloration. So I took her with us to their appointment and asked for her to be seen too, which they allowed. But only after I had to call our insurance and have them change the address to their office, because they had us listed under a completely different doctor.

So Dr. Barnwell came in and took a look at Mary's mouth, they did a strep swab that came back negative, so he said it must be viral. I'm wondering if it has anything to do with her JIA?

He took the paperwork for Kathryn that Johnnie and I had filled out 3 weeks ago, along with the paperwork from her teachers, and told me that we definitely need to follow up with the specialist, so I got his number-again, cause I lost it before, and will be scheduling that appointment in the morning. He also added Melatonin to her medication. We picked it up today along with a refill of her Clonidine.

He did an ANA blood work panel on Clara and referred us out to Dr. Vega-Fernandez. He thinks it's definitely JIA. :/ Her shoulders and her knees are hurting her so bad. She can barely brush against anything with her shoulders and she's in pain.

This is crazy nuts! Why is JIA running rampant within our family all of a sudden?

So now they all 3 have to see the psychologist, all for different reasons. Kat for her ADHD and anxiety, Clara for her social anxiety and Mary for her JIA. This should be fun.

She has still been waking up with night terrors. Even with the Melatonin added to her medicine. I don't know how to stop this. He asked me today if she had experienced any bad emotional traumas. I have my suspicions. I know she won't ever leave my sight again, with the exception of school.

(Sleeping so beautifully and peacefully, you'd never even know she was in a full on night terror just a few minutes earlier.)

She actually allowed me to touch her tonight during one of her outbursts, (She's doing it off and on tonight already). I held her hand and rubbed her shoulder. It may sound like nothing, but it's major for me. I am not normally allowed to make contact with her at all during her outbursts, until she has calmed down quite a bit. I am really hoping this is a sign of progress.

Another of Kat's Night Terrors

Another Day in Atlanta - Clara's Spacer Appliance Appointment

(Clara at her Orthodontic appointment this morning)

We went in this morning thinking she was going to have her spacer taken out. She had big plans that included buying twizzlers, bubble gum, starburst candy, skittles and anything else she hasn't been able to eat since getting the spacer. We found out quickly that she doesn't need to be making these plans for awhile. He said it'll be another few months, and then after that she will be moving forward to braces, so it's going to be a long time. However, he did tell her that if she is just craving twizzlers so bad that she can't wait, she can have them, if she is very careful not pull her spacer loose.

She was happy with that. :)

Tomorrow we have an appointment for Clara and Kathryn with their Pediatrician. I will update on that tomorrow. I'll write more then, I'm exhausted from the day, so I'm going to bed early tonight. Goodnight y'all! :)

Spring Break 2016

Does anyone else remember when Spring Break meant relaxing, taking a real break from everyday life, spending the entire week watching MTV Spring Break, oooohing and awwwing over Anthony Kiedis and Flea or a few years later, Joey Lawrence in his plaid (waisted) shirt? Munching out in front of the tv, singing along, screaming when your favorites came on and wishing you were old enough to be in the audience....ahhh the memories.
I remember it like it was just last week, 20/23 years ago.

So my question is this....When did Spring Break become stressful and crazy, loud (not in a partying, good kind of way), but more like when did Spring Break become about adulting, doctor's appointments, and carting a bunch of loud-mouthed, ungrateful, whiny kids around from place to place, stressing over gas and food and drinks, running after babies and trying to wrangle them like they are unruly baby cows?  Aye, Yai, Yai!! LOL

We are only on day 3 and I am done! Spring Break is ov-ah! The rest of this family's Spring Break will consist of doctor's appointments, cleaning and organizing the house, playing board games, watching movies and hanging out together at home! I started this break off sick as a dog, from what we thought was salmonella poisoning, we were wrong. And it has been one heck of a ride, let me tell you.

Last night we went to Stone Mountain...with all 4 children, even the ADHD 5 year old and super hyper, super fast, never listening 2 year old. The babies definitely put up a chase. But it was fun. It really was. I enjoyed watching them play, run around on that big open field down by the lake, and the smiles on their winded faces was priceless. Johnnie had a hard time letting them run, he was nervous, he was afraid they would get to the lake or bother the neighbors, so he was frustrated and didn't get to enjoy our time there very much.

Aiden had a blast before the lasershow, not so much during. I really thought that once the show started it would grab his attention and he'd be enthralled...yeah, not so much. Me and Johnnie had to keep handing him back and forth just so we could each get a break from the struggle to hold him down and keep him from running wild in the dark. He did stop and take notice for the huge flames and the fireworks, but it only lasted as long as they did.

Kat loved the show, and sat still with Johnnie until my brother and his family got there with Clara, then she spent the whole show with a cousin or her Uncle Jason.

Mary and Clara always love the lasershow. They'd go every weekend if we could.

Afterward, they ran and played some more on the lawn and we were the very last people to leave the park. LOL
We went out the wrong way and ended up on the interstate instead of going home back roads, which was stressful and chaotic, with 6 kids in the back of the truck. We brought home two of my nieces to spend the night with us. We love when they come to spend the night. They are sweethearts and the kids love spending time cutting up with them. <3

When we got home, I noticed that Marian had the rash on her face. I took a picture and marked it down along with her temperature.

No fever. Just the rash, which was hot to the touch. I got the kids all settled in and when the house was quiet and everyone else was asleep, I was wide awake. I could not stop thinking about the day we had in Atlanta with Marian at her doctor's appointment. All the questions they asked me that I had no real answer for. Like when it all started, or when it turned from bad to worse, how did it start, how did it get worse, what was the order of it all, were there high fevers with the rash, before the rash, after? Stomach pains? And then it hit me! FACEBOOK! I am the Facebook junkie that everyone makes fun of with memes on Facebook!! (You see what I did there, right?) ;)

I got up and went searching, back, back, back and voila! There it was! The pictures, the timelines, the symptoms, everything! I have my foundation to give to her doctor....but it was a very short lived victory when I put it all together and realized that she more than likely does indeed have systemic JIA. That was what we were praying she didn't have. From what research I've done, from my own understanding of it all, sJIA is the only potentially fatal version of JA. It attacks her internal organs and causes them to get inflamed just as her joints and muscles do. Y'all know that doesn't sit well with me. Of course there are more tests to be done, more conversations to be had, and I could be totally wrong. I just have this sinking feeling that I'm right on with this one, unfortunately. And if she does have sJIA, it doesn't mean she will die from it. It doesn't mean she will suffer all of the symptoms, it just means she can. So that kept me up, my head literally spinning every time I closed my eyes. I tried laying down and cuddling up next to my warm, snoring husband, but that only worked for a few minutes to calm me down.

I got up and walked around checking on the kids, the girls in the livingroom and Aiden all alone in his big queen bed in his room. I straightened up the house a little, quietly, around everybody. I got online and did some more research. And then I gave up and got in bed next to Johnnie, picked up my phone and played Pyramid Solitaire until I finally got sleepy enough to drown out the chaos and the worry.

I fell asleep around 3am.

Then Kat woke up crying. *sigh* I got her back to sleep, went back to bed and fell asleep briefly.

Clara woke up, fidgety, so I moved her in with Aiden. I went back to my bed.

Kat woke up again. This time, she settled in next to her cousin and fell back asleep. I went back to bed and fell asleep. Aiden woke up. I got him back to sleep, and went back to my bed.

I fell asleep about 20 minutes later.

Aiden woke up again! I brought him into mine and Johnnie's bed this time, knowing that only then would I actually have a chance to sleep. It was only for a few hours, until he literally kicked me out of my side and I had to go get in his spot in his bed next to Clara.

By that time, it was 6 or 7am. The sun was just barely shining through the top of the blackout curtains in their room. I put my phone under my pillow, which is a big time no-no here, and went to sleep, exhausted. We had to be up at 8:30am to get us all ready to meet my brother, my niece and nephews at Noah's Ark. I reset my alarm at 8:30, no kidding. We got up at 9am instead. It made us 30 minutes late to meet them, but I had to get some sleep.

Kathryn and Aiden outside of the Alligator's fence. Can you see the Alligator?

All of the kids by the Alligator's fence. They were huge gators!

He's coming to get you, Barbra! Er, Kathryn. 

Kat's feeding the goat, Aiden's pulling up grass to feed the goat. :)

Aiden fed this goat and got his little finger bitten. :( But he still wanted to feed the other animals too. :P

Aiden loving the monkeys.

My baby bear!!

Clara at the wolf pen. :)

Aiden seeing the Tigers. :)

We had a fantastic time at Noah's Ark. We missed my sister though, who was unable to make it. She would have loved the Peacocks almost as much as I loved the Bears!! :)

I was like a little girl every time we came to a new Bear. I just love them. They are so majestic. I had never been so close to one before today, and I can not wait to go back! With a better camera, hopefully. My phone camera is horrible.

The kids had fun and it was such a great experience and memories made for them. They'll never forget it, I'm sure.

I think Aiden's favorites were the alligators, the baby goats, the monkeys, and the parrots. He wasn't much interested in anything else, except the ants crawling around on the ground by his stroller wheels at each stop.

Kat was just excited to see everything. She ran from one to the next, wide eyed and just as excited at each one, until she gave out and was too tired to go on, and hungry. Then she wanted to go and complained the rest of the way back.

Clara and Mary stayed with their cousins, so I don't really know what they liked, except for when we came to the wolves. Clara is a huge wolf fanatic. I was so happy to be there to see her seeing them. She loved them, just as I knew she would. I loved seeing her happy there with them. It was great.

After Noah's Ark, we came home and ate. Clara threw up. Then Mom told me that my Daddy called to tell her that he's sick as a dog somewhere out on the road, (He's a truck driver, and had just been home overnight). So remember when I said I started off the break sick due to what we thought was salmonella poisoning? Yeah, well this evening we found out it wasn't that afterall. :( Clara is throwing up and her stomach is hurting her bad. I just gave her some Maalox and one of her Naproxen to see if it would help and she went right to sleep. I hope she is able to sleep through the night and get some rest. I hope we all get to sleep through the night to get some much needed rest. I'm done for. And I hope my nieces and the rest of my brother's family doesn't end up with this nasty bug. Sorry guys, we were wrong. :/

I did lose 10 pounds this week though, that's a good thing. I also made my consultation appointment today for my weight loss surgery. Kind of excited, very nervous. But I know I need this. I need to be healthy for my family. So it's really a great move.

Tomorrow, we stay home. Johnnie went and got Jell-O and Ginger-Ale for Clara and he picked up Mary's meds from the Pharmacy, so we are in for the rest of the week I hope! I need rest! This Momma is down for the count.

First Rheumatology Appointment

Well, today was the day we had been waiting for all this time. We took Marian to her first rheumatology appointment at Egleston CHOA. We left extra early and knowing we were going to be using a route we were familiar with, and was a back road, we thought we'd have plenty of time...boy were we wrong. We got over halfway there and hit a traffic jam that held us up significantly. I do not handle this kind of stress very well, or any kind of stress actually, but this high level of stress, worried about losing her appointment and having to wait another 4-6 months, was almost all I could stand. I was shaking before we got there....it didn't stop until a few minutes after we got home, hours later.

So first, we went by the address that the internet search of the doctor's office gave us because on the initial setup for the appointment, we were not given an address, a phone number or directions. Just a date and time and "Egleston".

So we got to where the address in our GPS was taking us and it was Emory. All around us was construction....on almost every corner. It was chaotic and confusing. You all know how I handle chaotic and confusing, right? o.O

We went into the parking deck because we had no where else to go, traffic was pushing us forward and we didn't have the luxury of time to look and redirect. We parked in the Emory parking deck, which goes upward forever!!, and had to go to the very top to find a spot. I don't know if any of you are familiar with this parking deck, but besides being terrifying from how high it goes, it's very narrow in it's driving space. Not fun.

So we get out and we are already 4 minutes late. If you have kids who have to go to the doctor often, you know that they can be late, you can not. They can be an hour late or more, you have 15 minutes, 20 if you're really lucky. We had 20. From where I was standing on that scary parking deck, there was no way that I was going to find this place in 16 minutes or less...no way. So what do I do? I try to find a phone number to call them. And right now you are saying, "Well, Tina, why didn't you make sure you had the directions, the address and the phone number before your appointment date?!" And you'd be right! Why didn't I have all the information I might need? Because I am a total freaking mess!!!

Guess what? The number they have listed, 404-785-1775, for a Dr. Patricia Vega-Fernandez on the internet, leads to the voicemail of a woman named Stacy who apparently doesn't stay anywhere near her phone!!

By this time, the tears are welling up, I am making a complete and total arse of myself and making a huge scene on the top of this parking deck in front of everyone walking by us, because our appointment is slipping away, second by ticking second, and there is absolutely NOTHING that we can do about it. We are at the mercy of time.

I finally find the correct number. I call it and get yet another rude phone woman for this doctor's office. And while I know I should have been calm and held my tongue, I was too far past that point and I got kind of sarcastic with her when she asked me where I was.....   :/

I had already explained the situation. I told her I was standing on the top deck of the Emory parking deck and that I didn't know this area, but every direction was another hospital under construction and I needed help. So when the woman who was already being rude asked me, "Well, where are you ma'am?" I said in my very best hillbilly voice, "Well, I don't really know that ma'am, cause I'm from the bodunk south and I'm not familiar with this here area."
Probably not the best idea in the world as it didn't get me what I wanted but just more rude remarks from the other side of the line, so I just hung up and we went down to the ground level to ask people there.

They got us to the general direction, so we scurried off as fast as possible, and ended up at the information desk of Egleston. Our place was next door. o.O

We got there 23 minutes late. 23 MINUTES!!! And the lady says to us, "You're over your grace period for being late by 3 minutes, let me see if the doctor will see you anyway." Y'all, I was praying, I told Johnnie and Mary to pray and not just that we would be seen, but that when and if they came back out to tell me that she wouldn't be seen, I didn't end up in jail today. Because had they said no, I cannot guarantee I would not have blacked out (with how hard my chest was thumping and my head too), and hurt somebody. They have already made my baby wait 5 months just from initial diagnosis, because of policy, but another 5-6 months and I would have been out of my skin.

When they said she could still be seen, I almost lost it. I was holding back the tears as is.

So we got back in the room and she was registered by the rudest nurse in history. I am telling you, our entire experience with them, minus the x-ray tech, was horrible. Nothing like Scottish Rite. Then the first doctor comes in to examine Mary. His English was so broken, that we could barely understand him and he was getting upset with us for not being able to understand him. SMH
He examines her for quite awhile, and calls in Dr. Vega-Fernandez. She comes in and examines her almost the exact same way (all the while through these examinations, Aiden is going nuts and just being loud and horrible), so I ask Johnnie to take Aiden out of the room and she continues. They asked lots of questions and then Dr. Vega-Fernandez, who I understood better than the other doctor, tells the other doctor to explain things to me....omg!! So he does his college best, and this is what I got from it....

She has JIA, not JRA. And it's possibly systemic, which is what we didn't want. So she had tests done today and will have lots more done in the near future. She has to be back in 3 weeks and until then, I have to keep a daily log of her temps, her rash outbreaks, and her aches and pains.

Y'all, I haven't even really had time to process much, with the stress of the experience, Aiden and then Johnnie being stressed because of all of it too, my mind is total mush.

She went back for bloodwork and then x-rays. During the x-rays was the only time I actually relaxed a bit and had someone actually want to be nice to us. The techs could see the inflammation and swelling right away on the x-rays. We have had 2 or 3 prior x-rays where the previous techs told us there was nothing wrong, they were normal. We should have gone to CHOA a long time ago.

Now she has to go see an Ophthalmologist for her eyes to see if there's any inflammation there.

But tonight we are going to Stone Mountain with my brother and his family. We're going to watch the lasershow and to give the kids a wonderful memory. I hope it will be a relaxing fun time for our family....cause we need it so bad.

Please, if you follow us and you pray or whatever you may do, keep us in your thoughts. :)

Thank You. <3


Oh! And when we got home, I had missed a call from Clara's surgeon's office. I called them back and we scheduled Clara's second surgery of the summer, her bone graft and nasal revision. It's on June 27, but we don't have a time yet.