Just Your Typical Day

So this is something that happens quite frequently, which is why we have decided that public school is not for us. (Clara and Mary will be homeschooling next year, Kat has to start out going to Public school because this Mommy is not equipped yet to teach her at home).

Because of the tantrums last night, or night terrors, or whatever you want to call them, I was waaay too exhausted to get up on time this morning to get the kids off to school, and I knew that Kat wouldn't be able to wake up at 6:20am. It wasn't happening.

So after Johnnie took over with Kat last night and brought her in to sleep with him in our bed, I went and slept in Aiden's bed, thinking that I'd get to sleep some since it was my morning to get the kids to school. Nope. Guess who woke up all night with nightmares? Yep. Aiden. He must have been dreaming that an evil gummy was chasing him because he kept sitting up and crying about the gummy and telling me to get it. o.O Yay...

This morning didn't happen at 6:20am. It was more like 7:50am. I got up and then it took awhile to get everyone else to get up. Once we were all ready, it was 8:25am. I had to be at the kid's dentist for Mary and Aiden's cleaning at 9. So Kat and Clara were forced to come with us. Which turned out to be a good thing.

Aiden wore his Super Aiden cape and they loved him! He got up in the chair, a little apprehensive at first, but once they put Barney on the tv above the chair and started calling him "Super Aiden" and telling him that the tools were a "super toothbrush" and "super toothpaste", he was on board!! LOL
He laid back with his sunglasses on (they give them to the kids to help them see the tv and not get the light in their eyes), and let them do their job. He actually kind of enjoyed it, I think. He was sad when it was over.

Mary did great too, even though she was a little upset at first that we would not be returning to her previous dentist. (They were very unprofessional, rude and hard to deal with), but she liked them because they didn't hurt her and told her she needed braces, which she wanted. LOL
But she liked the new dentist too, even though she says that Mary's teeth are perfect and she does not need braces.

When both of them were done, I had Kathryn come in to be looked at. At her first appointment with them, they tried to do dental x-rays and she freaked out on them. Same for the second visit and nothing new this visit either. So they took her in and sat her in the chair, where she began to have a small fit because she was scared. She calmed down and started watching tv, but she just can not sit still. I recorded her to show y'all what she does, lol. She's just a ball of energy, always. Something always has to be moving, some way, somehow. She wouldn't keep her boot on on one of her feet either, so she is half bare-footed.

Kat in the Dentist's Chair (Part 1)
Kat in the Dentist's Chair (Part 2)

So when the dentist came in, Kathryn wouldn't let her look at her mouth at first. Then when she finally opened her mouth, a very small amount, she complained that the mirror hurt her. :/
She finally calmed down and allowed her to look. She said everything looks fine other than the two cavities that we already know about and have a treatment plan for. On my way out, with Kathryn jumping all over the hallway, the nurse came out and asked me to set up and appointment for a sedation filling. They want to put her to sleep to do the dental work she needs because she is so combative. So I signed all of the correct papers and set up her new appointment time.

The dentist office is amazing. They are so patient and understanding. They do balloon animals for the kids, give them rewards and the fact that they placed the tvs in the ceiling for the kids to watch while they are laying in the chair, is awesome! I love this place. I asked them to be my dentist, but they politely declined, saying that I was too old for them. LOL

Now we are home and the kids sound like zoo animals out there in the living room. (I snuck away to talk to DeVry, cause I'm going back to school!!!! :) I'm going for Medical Coding and Billing. I figured, I was really good at the Coding and Billing portion of my courses while I was in school to be a Medical Assistant, I love paperwork and I'm having to deal with the medical world so much now, that I might as well utilize my talents and knowledge, right? ;)

I can't wait to start. May 2, 2016 is the first day of the rest of our life. ;) <3

Great Day, Not So Great Night

I thought I knew what ADHD was and that I had a handle on how to care for Kathryn, but I stayed up late last night researching ADHD and learned that I was wrong. I learned that her brain is always working overtime, she is in a constant state of chaos. I don't know about you all, but I can't handle chaos at all. Even a little bit of the feeling of being out of control throws me into a stress filled panic. I can not imagine being in a constant state of chaos and confusion, especially at 5 years old.

I learned that the tantrums are "normal" for ADHD and even Autistic children. I still believe that she is at least borderline Autistic.

I learned that she can not always help not paying attention to me, or ignoring me, or interrupting me. I learned that even though she may not want to do the things she knows will upset me, her Daddy or her siblings and Grandparents, she can not stop from doing them. Her brain won't allow her to think through it and realize there will be consequences to her actions. So even though she knows right from wrong, she has to act if her brain tells her to do so, even if she doesn't necessarily want to.

I don't know what to do to help her, y'all. I know that up until now, I have been going at this all wrong, not really having an understanding heart and not really working with her.

I have to learn how to parent her. Because she is going to take a whole different approach to parenting. This is new to me. I just thought she was being bad, rebellious even. I mean I knew something wasn't quite right, but I thought she was doing a lot of this on purpose. Now I know better. And I am so broken-hearted for my baby. :(

I also learned that a messy, cluttered house can cause her stress and for her brain to be more chaotic. I completely understand that because it does the same thing to me. So today, I got up and cleaned, organized and got rid of lots of needless stuff. I want this house to be warm and inviting for her. I want her to feel safe and protected and comfortable. I can not stand chaos, so I definitely don't want her to feel that way.

She went to Awanas tonight. I told her teachers that she is not to have anything with sugar or dyes, (I forgot gluten), and when they told me that tonight was their ice cream party, there was no point in telling them no dairy... :/
Of course I could not tell her no. All of her friends would be eating it in front of her and she's 5! I don't know how to handle these situations yet.

So of course...

Tonight she woke up in a tantrum. These tantrums can last anywhere from a few seconds to an hour. And there is nothing I can do for her. She will not let me hold her, touch her, talk to her, or do anything to help her. I'm not really even sure she is fully conscious when she's having them. They scare me and break my heart. I do not like being helpless when it comes to my kids. And there is absolutely nothing that I can do for her. Sometimes, most times really, she will let her Daddy hold her and soothe her. Very rarely, she will allow me to comfort her. Very rarely.
Tonight I recorded her tantrum. I just want to be able to show her doctor, so he knows what I'm talking about, what I am trying so desperately to explain to him.

Kathryn's Sleep/Waking Tantrum


After listening to that, you will better understand my sleepless nights, my breakdowns after a full week of no sleep, and why I hurt so badly for my baby. This went on for about 4 minutes before I asked Johnnie to bring me my phone to record her, and it went on for about 5 more minutes after I turned off the recording. Johnnie came out of the bedroom and picked her up and sang to her and in less than 2 minutes, she was sound asleep on his chest, breathing normally. Calm.

(I don't know what she'd do without him.)

I don't know if the tantrum was brought on by all the sugar and dairy, or if it's a side effect of the Clonidine she's been taking at night to help her sleep (it hasn't been working so well lately), but I know that I am cleaning the house of all sugar and dyes and dairy tomorrow. It's just not worth it. And every ailment, disease, disorder, ache and pain in this household can be helped to be better by cutting out all of those things from each of our diets.

Y'all, I seriously feel like people probably look at my Facebook posts and this Blog and think, "Man, that woman is just nuts! She's making things up to get attention and she's using her kids to do it!" But y'all, I couldn't make this stuff up if I tried. I was a super healthy little girl (except that I too probably have ADHD). I don't remember ever even going to the doctor (except for vaccinations), until I was pregnant with Clara at 23 years old. And now my entire family is sick all around me and I am having to learn a whole different world. One of sickness and pains, diseases and disorders, tears and tantrums, frustrations and emotional outbursts. It's crazy.

I went though a lot when I was growing up. From being picked on relentlessly, to much bigger, deeper traumas, and I suffered with anxiety and depression all the way through to my adult life because of it. One thing I will always remember, especially now, that my Mom used to say to me was that I was being prepared for something in my future. That I was being taught early on to have a thick skin because I was going to face something that I needed to be strong for. This is it.

Right now, in this house, in this family, we have diabetes, hypoglycemia, JIA, asthma, Meniere's disease, hearing loss, hindered eyesight, ADHD (possibly Autism too), anxiety and panic disorder, night terrors (Marian had this too until age 7), severe phobias, and then all of my fat girl health problems. It's C-R-A-Z-Y!

And to top it all off, Mary has been in severe pain with her back for the past 2 days. I am praying it's not the JIA. And Clara's knees are hurting her again. o.O

We need a day of normalcy, like now. I am so glad that Spring Break is coming up soon, (We thought it was this week, but we were wrong). We need to take some time off of school and everything else, lock ourselves inside this house and just relax together, watching movies and playing games.

I anticipate tonight is going to be a long night.

Kat's Meltdowns

Saturday after the egg hunt, we had to go to Hobby Lobby and we were all starving, so we went over to Freddy's to grab a quick burger, (Yes, I know, bad-bad Mommy).
We know better than to even attempt to go into a restaurant with all the kids, especially the babies, so we just went through the drive-thru.
But even the drive-thru can be hectic and chaotic. Kat is screaming at me the entire time I am trying to give our order, even though I had already confirmed her order with her, she still continued to scream her order at me while I was trying to talk. And then started whining that I was being mean and ignoring her.

Once we had our food, we pulled over in the parking lot to eat. After figuring out whose kid's bag was who's and handing them out to all 5 kids, we were just about to eat when Kat started wailing at the top of her lungs, throwing herself around in her seat, thrashing her body all over the place and just screaming and crying, loudly, like someone or something was hurting her.

The cheese from her burger had touched the box it was in.

I'm just going to allow that to settle for a moment.

A long moment....

We are all tired. We are all hungry. And we are all trying to enjoy our lunch when this starts and lasts for a good 25 minutes or more. Johnnie is so worried that someone is going to hear her and think we are hurting her that he's uncomfortable and asks me to roll the windows up. I filmed her to show her doctor the video. She completely disrupts almost every situation like this. Whether it's movie night, game night, dinner, breakfast, lunch, special outings, grocery shopping, or just driving in the car to go somewhere, she is constantly throwing these huge fits that are completely ridiculous and blown far out of proportion for what's bothering her. And yes, we did try to comfort her, Clara fixed her burger, and we all tried talking her down. It didn't work.

This is what made us finally go in to her doctor with this to see what was wrong. We knew there was something going on.

So after I took her food away and put my own food away so that I could drive us home, she finally stopped the fit and quietly asked for her food back. We both ate while I was driving.

I can not even begin to explain to you what it feels like when she is in the middle of a fit. I can tell you that it makes my skin crawl, it makes the hair on the back of my neck stand up, mostly because of the high pitch of her screams, but also because of the stress and my blood pressure shooting through the roof. I get nauseous. I get tunnel vision and I can't think through the fits. I get angry and I yell sometimes. I honestly have tried to keep my calm and I usually can through the first 3-5 minutes, after that I am just at a loss and can't even hold a thought. It's truly difficult.

Tonight, on the way home from somewhere (I can't even remember where we were), she starts screaming bloody murder in the backseat. She is trying to climb the back of Johnnie's seat, trying to claw her way over Clara who is sitting beside her and I mean just freaking out. A flying ant had come in her window at the stop sign and she was ready to hurt herself and everyone else trying to get away from it. This is a perfect example of her irrational fears, or maybe not irrational, but phobic fears, and her extreme anxiety and panic. Johnnie got the ant out of the car and she was deep chest sobbing for a few minutes.

Then tonight at bedtime, after she was given her sleepy meds, she freaked out, full blown fit, screaming and crying and being phobic about going to sleep because of the ant earlier.

I don't know what to do for her when she gets like that. She doesn't listen to me or anyone else. She ignores us when we try to explain anything and when we try to comfort her, she pulls away. Except for with Johnnie, she'll let him hold her and soothe her most of the time.

She finally got in the bed with Mary and went to sleep, but it took a good 40 minutes of fit throwing first.

After about 10 minutes of the fit, Clara got upset and started being gruff with her. As much as I don't want her to be mean to her, I do understand her frustrations. Kat keeps us all up at night. Me, Clara and Mary. We lose a lot of sleep. And when Clara had tried for about 10 minutes to soothe her and and talk her down, she just got angry and frustrated and started getting a mean tone with her. This is the disruption and turmoil that takes place within our family, daily, due to the ADHD (if that's what it is).

It's really hard to look back on pictures of her up until she was 2 and see the sweet faced, calm baby that she used to be.

We can not wait for the doctors to help us. We have an appointment coming up for her full, official evaluation. It can not get here fast enough.

Easter 2016

So we had a great Easter.
Friday night, Mary had her friend, Dayana spend the night and join us at the egg hunt on Saturday morning. They had a good time and we ran into another one of Mary's friends, Kerstin. :)

The hunt was a blast and the kids loved it! It was Aiden's first ever egg hunt and he really, really enjoyed it. He filled his bucket up himself! :) <3

                                     

Kat had a great time too and really got in there. I had to stop her several times from pushing little kids down to jump in front of them to take eggs. *sigh* She was really excited.

And even though Clara thinks she is too old and/or too cool to participate in something like an egg hunt, she ended up happy too. She won the big fluffy bunny in the raffle. :)

Then Sunday morning, we woke up to find that the Easter bunny had been here and left five baskets. They were so happy and excited to see those baskets! It was so sweet to see their faces. :)

We colored eggs while I cooked and we were all set to go to my Aunt's house for an egg hunt when the sky fell out and it poured for the next half hour. :(

So we did an egg hunt inside here with Mary and Kathryn. Clara didn't want to and Aiden was asleep.

It was a long, busy day, but it was a great day. :) One of our better Easter's. 

Let Me Tell You About Kathryn

(This was taken when she won a medal and an ice cream cone for good behavior and doing her chores as she was told. She was so happy to win over her sisters, LOL)

Kathryn is 5 years old. She is our youngest daughter. She has 2 older sisters, Clara and Marian and a baby brother, Aiden.

She is currently being assessed for ADHD, and anxiety/panic disorder with night terrors.

We have known that there is something going on with her since she was about 2.5 years old. She's super hyper, she can't focus or concentrate for very long, unless it's on an electronic of some sort. She doesn't follow directions very well or listen to people in a position of authority. She's rebellious (beyond the norm) and impulsive to a fault. She talks back, she talks out of turn, she interrupts conversations constantly, even if she has just been corrected over and over. She gets hurt a lot because she doesn't really learn from the previous times she was hurt doing the same thing. She lies, a lot. Even if she knows she's going to be found out or if she knows you already know she's not telling the truth, she will fight it out to the death that she's not lying. And the lies are often times really far fetched, like she rode a dragon to school that morning. And she believes it. It's not your typical childhood imagination type of thing. It's really hard to explain. And you can't really understand it until you have seen what I'm talking about.
She screams and has bad fits of anger and frustration. She blames others when she has done something wrong, even if she knows she's wrong. She has trouble with irrational fears that have brought her into having really bad night terrors. She has trouble with feeling like she isn't loved and problems with depression too.

On the other hand, she is bright, seriously intelligent, funny and playful. She's really happy when she's happy and her smile lights up the room, as you can see in the picture above. Her personality is huge and bubbly, and she has the biggest, kindest heart I have ever seen in a 5 year old. She believes that everyone can be her friend, and she has never met a stranger. She loves to play, draw, tell stories, play cards or board games. She loves her tablet and Youtube, Netflix, and Vudu. She has been working my phone since she was just 1. She can download her own games and apps and everything. The child is amazing. She loves rainbows and unicorns, candy and pastel colors, especially pinks. She is a girly girl through and through. She loves to have her nails and toes painted. She loves to wear beautiful dresses and dressy shoes. She loves jewelry and makeup. She loves to have her hair done (when she has long hair). She is truly a joy when she is herself. And the really great thing about Kathryn is how she loves. She loves from the bottom of her heart, so genuinely and sincerely. She loves hard and loyal. And if she loves you, you know it, without a doubt. Her hugs and kisses are wonderful and big.

When she is in a fit, or having a bad day, (which has lasted months this time), she is hard to handle and she causes chaos and disruption within our family. She puts us all on edge, because we don't know what to do for her, or how to talk her down when she is having an especially difficult moment. It's hard on all of us, especially her.

We talked for a long, long time about getting her help, but I was hesitant because I didn't want her labeled and I didn't want her on medications that might do long term damage.

But after lots of talking and trying other ways, and now with her teachers telling us that they are witnessing the same things and she is being disruptive to the class, we finally brought her into her doctor to discuss our options.

He asked us questions that sounded like the person who wrote the paper he was reading knew Kathryn firsthand. It was surreal. I got teary eyed a bit because it was such a relief to know that this is actually a condition and it's something that can be fixed.

I just want my little girl back. My fun, loving, happy, beautiful little girl. ADHD, anxiety and panic have taken her from me for quite a while now. We even wondered for a little while if she had a form of Autism. But the doctor knew immediately what it was and has promised that we can get her on the right track. Thankfully!

So he put her on Melatonin for the night terrors. It worked really well for the first 3-4 nights, then she started waking up crying and screaming again. Last night, she slept through the night (but her baby brother woke me up).

Last week, I had 12 hours of sleep...total. It was a rough week. I was crying like a baby by night 3.

This week I got to sleep Monday night, not Tuesday or Wednesday and am hoping to sleep tonight.
She slept so good last night, that when I got up to wake her up for school, I couldn't. I had to let her sleep until she woke up. I just couldn't bring myself to wake her. She doesn't get to sleep like that often at all.

He hasn't put her on medication for the ADHD because of her age. He has to wait until she turns 6 in October. She has to start seeing a Psychiatrist too. I am hoping and praying that this all works, and that we get to see Kathryn calm and focused soon. We miss that a lot.

(Originally written on Kathryn's Blog on 03-24-2016)

New School (Clara)

Clara misses a lot of school due to her hypoglycemia, her surgeries for her cleft and because of her siblings illnesses. Not to mention that we really aren't comfortable with her going to a public middle school.
So....

Tuesday night we went to a meeting for Clara's new homeschool. Our county offers an amazing virtual/face-to-face school.

I got off work early to make sure we'd be there by 6pm, when it was set to start. I was anticipating the heavy traffic that is usually abundant at that time here in our county. There wasn't any. So we got to the general area of the meeting place at 5:00pm....with all of the kids in the car complaining about being hungry and thirsty and not having anything to do. Then Johnnie chimed in that he had to use the bathroom because he is extremely addicted to Monsters and pees constantly. So after we finally found the right building, we had to drive around to the bathroom. We got back and spoke to the Principal and then had to go look for a place to buy something to eat to hold the kids and us over until dinner. We got back around 5:45pm. We were still the only ones there for the meeting, but now the people holding the meeting had also arrived.

Me and Clara went into the building and got to look around while we waited for everyone else to get there. We sat at a table and talked to the school Principal and some of the teachers. It was 6:15 before the first person (besides us) arrived. The meeting didn't even start until 6:45pm because everyone was late. But once they started rolling in, the cafeteria we were in filled up quickly.

We watched a presentation on the school and what we could expect, what they are and what they aren't, and then we got to ask questions. It was great and very informative. Clara wasn't really excited about homeschooling before the meeting, but now she can't wait. They said a lot of things that really sparked her interest and lit a fire under her. Like the fact that they have a robotics class. The fact that she will do virtual school 3 days a week at home and have face-to-face school 2 days a week at the actual school. Bowling for P.E was also a big highlight for her.
I really enjoyed watching the excitement light up inside of her as she listened to the Principal's presentation.

We are all looking forward to this change for our family. No public middle school or high school for these kiddos. There's just too much out there nowadays that doesn't sit well with us. I am so grateful for this program. It's exactly right for our family.

(Originally written on Clara's Blog on 03-24-2016)

First Surgery of Summer (Clara)

I was sitting at my computer desk this morning, trying to reschedule Kat's dentist appointment, find out when Mary and Aiden's dental appointments are, make new appointments, all before having to go into work, and the phone rang.
Clara's dentist was calling to schedule Clara's Pre-Op and her first surgery of the summer, her dental surgery.

So we have our dates, Pre-Op is on April 14th and surgery is on May 5.

I'm glad that they're starting her off with a simple surgery, which will be outpatient. Especially since it's right before she leaves for her Driftwood Trip.

We still haven't heard from the surgery scheduler at Dr. Burstein's office, but I'm anticipating their call sometime soon, I hope.

(Originally written on Clara's Blog on 03-24-2016)

Crazy Days

I started working about 3 weeks ago. Since then, I have barely had time to sit down and breathe, much less do much of anything else. Our days have been doctor's appointments and rushing to get things done before I go into work, and then our nights are rushing to get through dinner, bedtime routines, grocery shopping, and everything that we weren't able to get done in the daytime.

Clara is being looked at for JA. We switched Pediatricians, but the old one called back with a report on her bloodwork and said it was normal, but she wanted to get her ANA labs done and an x-ray on her knee. So now we have to let the new Pediatrician know that we need those done. More doctor's appointments.

She is just now coming up on hopefully having the appliance removed from her palate, and possibly having braces put in. We will find out on April 11 where we go post appliance.

I had to fill out her paperwork for her fifth grade field trip last night. She's going to Driftwood with the entire 5th grade class. No cell phones or parents allowed. Then while filling out the paperwork, I find out that they are also going to the Okefenokee Swamp. I was not happy. I am already so nervous about letting her go 6.5 hours away from me, with no form of communication between us for 3 days, but then I hear Crocodiles and Alligators. I told her if she encounters one that is set on eating her to push the kid behind her and run for her life. LOL!

So I cried.

Yep. I am that Mom.

I went over the rules with her. Like...

• No going to the bathroom alone, ever, for any reason. 
• Always know where the teacher is and do not ever get further away from the teacher than the teacher can run to her in a short time. 
• Kick, scream, claw, pinch, bite, punch, gouge if anyone tries to run off with you. 
• Do not believe people when they say they want you to come with them to save, help find, or pet a puppy, kitten or any other cute, small, furry animal. It's a lie. They want to kidnap you. 
• Strangers are scary.
• Stay in your class group at all times.
• Stay away from creatures that want to eat you.
• Do not go into the ocean!!
• Keep hands, feet and all other body parts OUT OF THE SWAMP! 
• Do not go onto boats or any other watercraft alone or without an adult.

And last but not least, 

• Come home to me! 

I am a bit overprotective, I admit that, I understand it, I accept it. And for the most part, so does she. She knows how I am. She knows it's because I love her so much and I wouldn't make it if I lost her, ever. So Mommy is a bit crazy nuts, but that's ok. :)

She accepts me and she loves me, crazy and all. <3

(Originally written on Clara's blog on 03-23-2016)

Clinic (Clara)

(On our way to Clinic)

We spent all day in Craniofacial Clinic yesterday...with Clara and both babies.
We spent about an hour in the waiting area. They have tvs with cartoons playing, and they have games for the older kids, but Aiden was in a special kind of mood and if we were to let him out of his stroller, he would have taken off all over the place. So he was ill and not being very good. Johnnie ended up having to take him down to the truck to watch a movie and wait for us to get done because he was acting up so much. Clara and Kat on the other hand were good to go, they had electronics. :P

So when we were finally called back, I had Clara and Kat with me in the exam room.
She had to see her entire team, including Audiology because it had been so long since she had a Clinic.
When the Audiology lady took Clara, I had Kat in the room with me. She had her tablet, so she wasn't really acting up as badly as she might have been without it, but boy did she give me a run for my money. She was getting ill because she couldn't figure out which games she wanted to download and because she wanted to stand up on the exam table to look out the window while holding her very expensive tablet out over the hard floor. She talked when the doctors came in to talk to me, and she threw fits that embarrassed me when I told her to stop talking over the doctors.

Taking babies to such an important doctor's appointment is a horrible idea. Unfortunately, we have a very hard time finding babysitters, especially on a weekday.

(Kat on her tablet, waiting for Clara to come back from Audiology)

Audiology came in first. They asked some questions to Clara and me, and took her up for testing. They took a really long time, which started to worry me. I was texting back and forth with Johnnie, who was also starting to wonder what was taking so long. While she was up on the 4th floor, all of her doctors came in looking for her, one at a time. They all talked to me for a bit and then had to go see other waiting patients and come back when Clara was back in the room.

When she got back, the look on the woman's face was full of concern. She handed me a paper with Clara's hearing test results and told me that Clara is going deaf in her right ear. She showed me the chart and said it is a significant hearing loss, she was suggesting a hearing aid for Clara, and for her to start back up with her ENT from when she was first born. I of course broke down in tears. To hear that your baby is indeed going deaf and could end up completely deaf in one or both ears is a hard pill to swallow. Of course Clara's reaction was, "It's nothing I can't handle." o.O

When Clara was first born, she had bad hearing problems. She was hearing like she was under water, and we were told that she could end up deaf. They put in tubes three or four times, finally clearing her and her hearing. So we stopped seeing the ENT. We thought she was fine. Now we know we should have kept making appointments. :( Because we thought she was going to go deaf as a baby, we taught her sign language. She used it a lot as a baby. But over the years, we have let it go. We will be picking it back up.

So then we saw her Orthodontist. He said the turns are looking good, to keep them up and that he would talk to us further when we were done with that.

After him, we saw her surgeon. He said that she is going to have surgery over the summer to do a bone graft that her Orthodontist wants her to have before he can move forward with his plans for her. He's going to use cadaver bone this time though because her last bone graft from her hip didn't go well for her. She was in a lot of pain for a long while and was even in a wheelchair for many weeks due to the pain of walking on her hip. He said he may even try to close her palate again.
He also said he wants to do some scar clean up around her top lip and nose.
He then explained to me that he is waiting to do anything about her deviated septum because she needs to get older and do some more growing first.

(In between each doctor, she had to have her phone. She is such a teenager already!) 

After plastics, we saw Speech. He was very impressed with how well she can say her sounds. He said there are some discrepancies still in some sounds, but they should fix themselves when her palate is closed and her top teeth and top lip are fixed. So that's good news. :)

So then her dentist came in, her dental surgeon. He said that her top front two teeth may not be salvageable. He is going to do his best to save them, but he may end up having to build her fake teeth for the entirety of her upper teeth, starting with the top two front teeth. She is ok with that. She wants the fake teeth.

When we were done in Clinic, I went down to ENT and made her first appointment with them. Then we left just in time to hit Atlanta rush hour traffic. It took us a little over two hours to get home. The babies were not happy campers at all.

I had a bit of a rough time trying to wrap my head around this news. I still am really. I can not imagine her going deaf. I just can't. Right now, its just too much for me.

(Originally written on Clara's Blog on 03-12-2016)

This Week's Appointments (Clara)

Tomorrow is Clara's yearly dental visit. It's just a cleaning, but it's the first in a series of appointments that will be starting her up actively in Craniofacial again for awhile.
Friday is Clinic with her entire team. We were told 2 years ago during her last surgery, that she would be starting up again at 11 years old...well, she's 11 years old. So we are thinking that's what we will hear on Friday.

I will update more tomorrow night sometime when I get home from work, (If I get the chance to do so).

(Originally written on Clara's blog on 03-09-2016)

Another Night Hurting (Clara)

Today Clara was dragging a bit. She didn't mention any pain, she was just kind of mellow. If you know Clara at all, you know that she is either really hyper, or she's on electronics. But she's not usually dragging. (That's honestly the only way I know how to explain it). She had a little burst of energy early on and then she was done. It could be her hypoglycemia. I don't know. That's how this whole thing started with Mary too, so I'm just hoping it's normal growing stuff for Clara.

She had 3 vials of blood drawn today to check her levels to see if we need to worry about JA. Tonight, her knees were hurting her again. They didn't look swollen, but we will see what they look like in the morning. A few days ago, they were really swollen and hot to the touch. That's when we took her to the doctor, and they decided we needed to look to see what's going on.

Tonight, I gave her an Ibuprofen and she was able to fall asleep. She woke up a few minutes ago and said the medicine is helping a little, (Thank Goodness!) They're still sore, but not as bad. So that's good. At least she can find relief from just one Ibuprofen.

If it is JA, I hope we have caught hers early enough to do something about it before it gets too bad. I don't know what she's going to do about hurting knees and walking around school tomorrow. I'm so happy that she will be homeschooling next school year.

(Please Keep Her In Your Prayers)

(Originally written on Clara's Blog on 03-03-2016)

Clara's Orthodontist Visit

This morning after the chaos of getting 6 people ready to go in 30 minutes or less, and then rushing to get Kathryn and Marian to school, we hit the highway with 2 minutes to spare! :)
We live not too far from her doctor's office, it's right across from where I had Aiden at Northside Hospital in Atlanta (Sandy Springs). At 2am, with no traffic in sight, doing 80mph, it only takes 30 minutes to get there.
But on a weekday morning, at 8:30am, it takes a little over an hour...if you're lucky.

Today we got there 30 minutes early! and there was a wreck on I-20 that was backing up a few of the off ramps for I-285. But somehow, we still managed to get there early. That almost never happens. We are usually at least 15 minutes late, sweating whether or not they are going to tell us that we have to reschedule now. :/

So we waited for about an hour, when they finally call us back, 30 minutes past at our appointment time. But that's ok. We were good.
Johnnie was holding Aiden because my arms were giving out after a 10 minute full on physical fight/wrestling match to keep him away from a phone that was hanging on the wall DIRECTLY behind my head. And Johnnie being the Daddy that he is, a total genius, has him on his lap watching Hulk cartoons on his phone. (Thank you, CHOA for your open Wi-Fi!!)
But even with Hulk, by the time we are called back, he's starting to wrestle with Johnnie too. He wants down so he can get into everything.
So when they call us back, Johnnie makes a bee-line for the door to take Aiden out to the truck. LOL

Me and Clara got to the back and spent a whopping 5 whole minutes in the ortho office!! :D
He looked at her appliance and looked at me and said, "16 more turns, then stop." got up and walked on to the next patient. Hahaha!! I was like, "Ok, cool!" So we made our next appointment and we were outta there!

(She never looked up from that cell phone! Except when he had to look at her mouth. As soon as he was done, right back into the phone she went!)

She had to have a total of 28 turns. With everything that's going on with her sister, Mary, and just other stressful family stuff, I forgot to turn it every night like I was supposed to. So I turned it a total of 12 times out of 28... not feeling exactly like Mom of the year, but with all that I have going on, I'm not going to beat myself up about it.
I'm just going to remember (with the help of my phone alarm and Google Calendar) to turn the appliance these next 15 times (Cause I already did 1), and be done with it.

She thought it was awesome. The best visit ever! LOL
All she had to do was lay back real quick, say "Ahhh" and she was done. Easy Breezy!

So now we wait until her next appointments coming up in March and then her next Ortho appointment in April. We are good to go! :)
Until Dr. Burstein sees us next week and says, "Surgery". :P

(Originally written on Clara's blog on 02-29-2016)

And It Starts...(Clara)

Tomorrow morning we have one of many appointments to come in the near future. I am not 100% certain about this, but I feel that this will be a busy year for us and for Clara and Atlanta doctor visits. She gets braces this year...*bleh* She's excited because she will be starting to fix her top teeth, and I am excited for her, don't get me wrong, but I also know what this means for everyone. LOL

Clara is moody when change happens and even though this is a change the she thinks she wants and is ready for, I am over here thinking..."Ok, braces. No gum, no taffy, no cheese or cheesy products, nothing that can get stuck in the braces or pull at them. Painful and uncomfortable adjustments, rubberbands, retainers, etc..."

She's just thinking, "Yay! Top teeth!" :P

She isn't really realizing everything that will go into getting those teeth into place.

So we have to figure out ways to distract her. New snacks to make her look left when she wants to look right. hahaha!
I guess it's a good thing she will be homeschooling next school year too. She definitely doesn't need anything else to make her feel different or self conscious. Aye YiYi

She's entering those teen years now. I am terrified. I am not looking forward to the teen years. Not that I want to rush them along either, I just know that those are the years where parents really start to lose a little bit of the control and have to start handing over more and more control to the kids. I am not comfortable with this at all...

My own teen years are not something that I want my children to even come close to. So I know that I will be a bit overbearing and overprotective, maybe a bit over involved as well. Johnnie's going to read this and think, "You will be?!" LOL

Clara already rolls her eyes and is defiant and disobedient a lot of the time. She is feisty and sassy and she has a smart mouth. She either clams up or she yells out in frustration. She's only 11. Whew! I am not ready for 13-16!! I am hoping it'll all even out by 17, lol Someone comment and give me hope, please!! :P

But she's also starting to come into her caring side a bit more at times too. I see glimpses here and there of her true heart, when she gets excited about her baby brother wanting to give her a hug or a kiss, or he lets her hug and kiss him.
Or when Kat needs a hug and she goes to Clara, and Clara holds her.
Or when Clara knows that Mary has had a rough day, or when Clara realizes that Mary's life has changed and we don't know if it'll get better or worse for Mary in the future, and Clara cries with us. And when I am having a bad day and can't hold back the tears, Clara comes to put her arms around my neck and comfort me.
These are times that I see that she is still in there underneath all of the grimy hormonal, preteen stuff. And believe me, I appreciate each of those moments. I hold them close.

(Originally written on Clara's Blog on 02-27-2016)

Praying They're Wrong (Clara)

(My baby girl is growing up so fast, and she's been through so much. I pray that she is ok.)

Clara had been complaining of aches and pains in her back in December 2015. We took her to her Pediatrician and they noticed a curvature in her spine and that her right side was higher than her left. They were concerned, so they sent her for an x-ray of her spine, thinking it may be scoliosis. The x-ray was sent out to a doctor at Egleston in Atlanta, Ga. He said she didn't have it, she was 3 points off from being considered as having scoliosis.

Clara has complained of growing pains for as long as I can remember. We have never thought anything of it, and probably wouldn't have until all of this happened with her little sister, Marian.

A few days ago, Clara started limping. She said her left knee was hurting her really bad. I started giving her Ibuprofen immediately and took her to the doctor. They did a physical on her and think she may have JA (Juvenile Arthritis) like her little sister. She has to go have bloodwork done and she's going to be monitored for a little while to see if it progresses.

Clara has already had so much going on. Her cleft lip/palate, asthma, severe depression, hypoglycemia, and social phobia...I mean isn't that enough?

I am such a huge emotional wreck with all that's going on with Mary, and knowing that Clara has Clinic coming up, braces, etc...We need a miracle. We need it to be growing pains only, no arthritis.

We are hoping that her tests come back normal and that her aches and pains go away. She has enough to deal with.

(Originally written on Clara's blog on 02-27-2016)

Stretching Clara's Palate

Right now we are in the process of stretching Clara's palate, getting her ready to get braces. While she swears it isn't in any way uncomfortable, I can't stand to do it. Unfortunately, if it isn't done, she doesn't get braces and her top teeth never get put in place. So I push through it and do it anyway. She has to have a total of 28 turns, one each day for a month. We've missed 3 turns so far. So that's 3 extra days of turns.

She had a device in already to stretch her palate, but for some reason it didn't stretch it as much as they wanted it to, so she is now on her second device. This one is supposed to do what the last one couldn't.

(This is the device. In the middle is where the key goes to turn it. If you look at the front of her palate, you can see the fistula that is still there. It causes food to get in her nose, come out of her nose, and get stuck on the top side of her palate. It causes all kinds of problems.)

She's excited about getting the ball rolling to getting braces. She very much just wants her top teeth set in place. She wants to be able to bite into food "normally", but I don't know if she'll be able to even after her teeth are fixed. Not at first anyway. The middle portion of her palate that holds the top front teeth, is not stable at all. It is the piece that was only attached at one point at birth. It still wiggles a bit, so I'm seeing that as another possible surgery in the future. :(
I guess we'll find out in March when she has her Clinic appointment with her Craniofacial Team at Scottish Rite in Atlanta.

But for now, she's miserable and counting the days to getting this device out and until her braces are off. While she is excited about getting the braces because of what she knows they will do for her, she isn't happy about not being able to chew gum, eat taffy, or about having to give up Twizzlers. She's ready to get her favorite candies back. :P

(Originally written on Clara's blog on 02-07-2016)

Clara's Surgeries

Clara's first few years were some of the scariest in my life. Not only was I a new mother, afraid of everything, hoarding the GermX and Lysol, but we were taking her back and forth to Scottish Rite in Atlanta for surgery after surgery. Any parent who has gone through handing their baby over to a surgeon, at any age, knows the anxiety and anguish that comes immediately as they pass through those double doors without you. Johnnie had to hold me up quite a bit in those early years. It hasn't gotten easier really, we have just learned how to better handle the anxieties, I think. We still cry, we still wring our hands until she comes back to us, we are still pacing the empty room waiting for her to be back in it with us, we still stand at the door, anxiously awaiting, looking for any sign of her or the surgeon or the surgeon's nurse coming down the hallway, and we still pray for her safety and the surgeons wisdom and steady hands.
But we can now take a breath or two before she comes back and we can eat while we wait for her, of course we run back up to the room once we have the food and we keep checking our cell phone in the elevator waiting for that text that says she's back from surgery and she's doing great. Thank fully we've never actually received that text, because we've never been out of the room when she was brought back.

(I always slept with her in her crib after surgeries. I couldn't stand to be away from her at all. Even just across the room.)

Clara has never been afraid of surgery. I guess because it's all she's ever known. She has actually requested a surgery before, a revision I believe. She is such a strong little girl. She isn't really afraid of much, unless you put her into a dark room. :P She has never given the doctors a hard time, or whined or complained about anything they were doing or were going to have to do. She has always, always just pretty much gone with the flow of things as they come. I am so proud of her and her strength. Her bravery. I am a chicken when it comes to surgery myself. I am the whiney, anxious patient. I want my Richie Bear and my husband right there with me until they have to rip them both away and wheel me back, (4 C-Sections and a gall bladder removal, possibly a Gastric Bypass within the next year, *fingers crossed*). But not Clara. She is the one who was always coaching me and trying to calm me down before her surgeries and mine. LOL She's very kind hearted and she doesn't like to see me scared.

The wait while she is in surgery is especially difficult on her Daddy. He is a nervous wreck the entire time she's out of the room from us. He's usually really sleepy as well because we don't sleep well, if at all the night before and he has to make the long drive to the hospital the next day, (I don't drive I-285). Once she's back in the room, they are inseparable. He stays right with her the whole time. Here's a great example...Johnnie was a heavy smoker most of his teen/adult life. I mean serious about his cigarettes. For her big surgery, he couldn't leave her. He quit smoking so he could stay in the room with her and not have to leave. We were in the hospital for 5 days. Anyone who has been a smoker their whole life can vouch for what an accomplishment that was and what kind of dedication it took to do it. He hasn't picked up a cigarette since. It's been 3 years now.

(These first two photos are of Clara's first two surgeries.)

The following photos are of surgeries and recoveries up until now.

(The following are pictures from the surgery in which she stopped breathing twice during recovery. The worst experience I have ever had in my life. For her, the experience caused anxiety and panic attacks that would last almost a month after surgery.)

The following are from her most recent surgery. It went very smoothly, with no problems at all, during, in recovery or after. She was thrilled to have a successful surgery after that horrible experience with the previous. No panic attacks! :)

This isn't all of her surgeries, but these are the ones that I have the pictures of right now. As you can see, she has been through so much. And none of it easy, I assure you. The last pictures here are of her most recent surgery. She's holding her hand up to show us that she's happy and/or laughing. She couldn't move her face because of the pain, but she could still smile and laugh at us being goofy. :) And that's who she is. Still smiling even through the pain. <3

(Originally written on Clara's Blog on 02-04-2016)