Bribery Week

We've learned that the key to successful parenting is bribery.

Some people may judge, but for us, it's all about survival. :)

Monday was the allergist for Jay and GracieGirl. Jay's dust mite allergy is off the charts. I haven't found a free housekeeper yet and allergy meds aren't cutting it, so the good doctor (he's one of the few that I actually like, even if we don't always agree) once again suggested allergy shots. I'd told him before that we will never again attempt anything involving a needle unless general anesthesia is involved. However, with the use of bribery, Jay actually had a "test run" shot in the office, and agreed to weekly allergy shots. Unbelievable.

Next was GracieGirl. The doctor is now thinking wheat allergy rather than celiac disease. He ordered another blood test, and then wants to do skin tests again. Bribery will be involved because GracieGirl has had both tests before and knows what she's in for!

E didn't have an appointment but he went along for the ride, and the allergist was very happy that he was in such good shape, just a week after being so sick.

Tuesday morning was E's fasting blood draw morning. He remembered the lab and wanted no part of it. There were tears but no screaming, so it could have (and has been) worse. Thank you, bribery.

Tuesday afternoon was Jay's appointment with his autism doctor. There have been many issues recently, but the doctor didn't get to witness any of them. Why? Because Jay knew that, after this appointment, he was getting his reward for surviving the allergy shot the day before!

One of the behavior therapists is here every Tuesday evening for Jay and E, and last week, she pushed Jay a little bit too hard for his liking. So he was not at all cooperative with her this week (understatement). She appreciates bribery and my guess is that she'll need to start using it again with him!

Wednesday was reading support and then the chiropractor for Jay, but he actually tolerates those two, so it was all good. He also had reading support on Monday and again yesterday. He's doing amazingly well, and even though he doesn't love going there (his teacher stopped giving him chocolate after each lesson!), I know that he's proud of his accomplishments.

Right now, Nate and Jay are seeing the orthodontist. Nate's appointment won't be fun, but this will be a particularly tough appointment for Jay. I had to figure out that fine line between telling him enough so that he's prepared without telling him so much that he's riddled with anxiety. He took two doses of a sedative prior to the appointment, so I'm just praying that it works.

Nick gets Father of the Year Award for taking the kids to every single one of these appointments (I was conference called in for a few of them), in addition to social skills classes, a school board meeting, two homeschool classes, youth groups, kids' groups, and soccer!

Finally, I have the quote of the week. I'm going to keep it anonymous, although most people who know my kids could easily guess who said it. It was said at an appointment to one of the doctors who loves to inquire about bowel issues. Every single time, the response has been that there are no problems. This response: "Well, yesterday I had a poop that was the size of a wedding cake!"

All I can say is that if we ever lose our sense of humor, we're in trouble!

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More Allergies and More Prayer

So, after listening to Jay screaming at the top of his lungs, and having to hold him down to prevent him from bolting from the room (and this was with the sedative that J had taken before leaving the house!), Nick learned that Jay is allergic to shellfish, trees, weeds, cats, and dogs. But, dust mites are by far his worst allergy.

The night before he went in for testing, I was reading about how most kids with eczema are allergic to dust. So now I'm praying that we can get the dust in this house under control so that we can get his allergies and eczema under control!

I spent hours cleaning and dusting the bedroom, and Nick went in and vacuumed thoroughly. The allergist said that we really have to take up the carpeting, put in floors, replace the blinds, and cover the mattresses and pillows with allergy covers. I'm just praying about all of that because I have no idea how we're going to come up with the funds to do it.

Meanwhile, I've been up since 3:30 this morning because GracieGirl now has eczema on her back and legs, and she was going crazy with the itching. I gave her medicine and then held her for an hour until she stopped whimpering and went back to sleep. I'd started cleaning out her room, because she is also allergic to dust. We need to get the rug out of her room, too, and get her mattresses and pillows covered.

Now I know what my mom went through with me when I was little because I'm allergic to dust. I don't know how she found the time to clean my room each day, but that's what I need to do with our bedrooms. The problem is that I can't vacuum or do a lot of the other cleaning, and Nick's already up to his eyeballs doing all of the other things I can't do! All I know is that five out of six of us are allergic to dust, and we need to find a way to keep on top of the cleaning.

So, I'm praying for flooring, allergy covers, and someone to come clean our house! :)


Oh, and they want Jay to start weekly allergy shots immediately. I'd better pray about that one, too!

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Allergy Testing and Prayers

I really thought I was doing the right thing.

J's anxiety has been through the roof recently, and I didn't want to add to the obsessing/worrying, so I didn't tell him that he was having allergy testing.

The look on his face when he got home (yes, I made Nick take him - I still haven't gotten over the last time he was tested, eight years ago, when he literally climbed up me in an attempt to escape through the window) told me that I was wrong.

All he said was, "You knew about this?"

I nodded. The look of betrayal on his face hurt my heart.

It went downhill from there. I soon realized that there was no point in trying to explain why I hadn't told him. All he could say, over and over again, was that he wasn't prepared. He likes to be prepared. He thought he was going in for a checkup...

From there, it went to talk of his birthmom, feelings of abandonment, sad accusations that we're not his real family...

After many hours of this, he asked me what I could do to stop his pain. I told him to pray and I told him that I would pray. He asked if I would ask my friends to pray for him. I assured him that I would.

A few minutes later, he told me that he had prayed and asked God if He would remove his pain. He promised that he would spread His Gospel if He did. He added that he knew that he'd spent most of his time in the house instead of out spreading the Gospel, and he wanted to change that.

With that, he rolled over on the couch and went to sleep. Eight hours later, he's still asleep on the couch! Definitely a first...

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J's Update

Still moving towards getting J to his Social Skills Camp...

I finally spoke with his autism doctor and we're getting a game plan together. She's going to increase one of his meds. I also told her that he started Singulair a month or two ago for his allergies. Here is a list of behavioral side effects from Singulair's website. J has experienced a good number of them. So, I called his allergist and he said to stop the Singulair immediately.

J doesn't know it, but he's scheduled for allergy testing on Monday. I hope we can figure out what's causing his symptoms so that we can practice avoidance and not have to rely on meds as much!

His doctor also wants to get his eczema under control, but we can't get in to see the dermatologist until September. She wants us to see our family doctor, which I think is somewhat pointless. J's former dermatologist already said that there's nothing more that he can do for him, so I'm not sure what a family doctor can do.

We took J to an ophthalmologist because none of the drops that the allergist prescribed were working. Let's just say that the exam didn't go well. As bad as I felt for J, it was almost amusing watching the doctor, who obviously had little experience dealing with kids on the spectrum, try to figure out what to do next. It seemed that he was stumped. A nurse came hurrying in after hearing the screams, but he didn't even know what to tell her to do! So, Nick and I jumped in and we finally got through the exam, which included rolling J's eyelids back, an unpleasant experience for anyone, but torturous for a kiddo with sensory issues.

J has Allergic Conjunctivitis and has to use a steroid eye drop in addition to his regular eye drops for the next couple of weeks. Thankfully, the new drops don't sting, because I'm just not up for any more battles, especially four times a day!

J's behavior specialist is working with him, too. She's contacted the bus company to see if he can take a test ride next week, as one of his big fears is riding the bus to and from camp. They're not returning her calls. Ugh.

Oh, and J went in to see if he would be approved to see the psychologist. They did a screening and then called me the following day, accusing me of "double dipping." What??? Yep, since he's getting Wraparound and seeing a behavior specialist, it was considered double dipping when we took him to another facility to see if he can see the psychologist there. They haughtily informed me that the screening will probably not be covered by his insurance.

What can I say? They're on to me. Yes, I was trying to double dip. I was thinking that I wasn't spending enough of my spare time making phone calls, filling out paperwork, and running kids to appointments. I just had to have more!

Unbelievable.

I realize that my attitude stinks. It's just been a long, behavior-filled week, compounded by too many headaches brought on by various medical policies. I told Nick that I'm going to pack up my washer and dryer (my essentials) and move everyone to the mountains of Idaho, where we can live the simple life and never deal with any more agencies, therapies, or doctors.

He said that I've had better ideas. :)

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E's Meds and Allergies

E had his first follow-up visit with the psychiatrist recently. She seemed as surprised as we are that the meds are working so well for him. I know that it's not common for the very first med we've tried to have such an effect. I also know that chances are that it won't always work so well. So, we appreciate the positive changes in him while they last.

Overall, E has calmed down a lot. For the first time ever, he plays alone, using his imagination. For the first time ever, he'll sit down and let us read stories to him. He plays house with his sister, and he sits through most of a video. He is more compliant, and generally nicer.

The meds aren't a cure-all, and I'm glad that I wasn't expecting that they would be. He's had very few rages, but he still routinely hits, destroys things, antagonizes people, and refuses to obey. He also seems to be even more obsessive than he used to be. Yesterday and today's obsession is that his ears are scratchy and he wants them massaged. He becomes more and more frantic as he talks about it, until he's hysterical. This started yesterday, continued through much of the night, and resumed as soon as he woke up this morning. It's exhausting, for all of us!

We're experimenting with different dosages, seeing if there's any change in his nighttime craziness. We also have a consult for another sleep study in a few weeks.

All of E's bloodwork came back normal, with the exception of his low white blood cell count, which is because of his Neutropenia.

E also had more allergy testing done. The good news is that his egg allergy has improved, so we're going to schedule an egg challenge to see if he can tolerate scrambled eggs. It's funny because they called yesterday with the results, right after E had been talking about his egg allergy. He told me that it was okay if he was still allergic to regular eggs, but he really, really hoped that he wouldn't be allergic to green eggs! We've been reading Dr. Suess recently, and he and GracieGirl keep begging for green eggs and ham!

The not so good news is that his peanut allergy actually worsened, and the nurse described his test results to cashews as "unbelievable."

So, we continue on our quest to keep him safe from those allergens. There haven't been any more incidents at camp, except when one of the parents sent a peanut butter sandwich to a camp field trip last week, even though the camp is now peanut-free.

There was also an incident at church on Sunday when he was given a snack. We'd had incidents before when they had a bowl of candy (with nuts) out in the classroom every Wednesday night. Every Wednesday, Nick would take the bowl and tell them that they couldn't have them out because there were children with nut allergies. Every Wednesday, they would tell Nick that the candy was for the adults, not the children. Every Wednesday, Nick would tell them that it didn't matter who they were for; any of the kids could reach them and the ones with allergies could potentially die if they ate them. Sigh. We'd never had a problem on Sundays, though. This past Sunday was simply a lack of communication. The thing with allergies is that all it takes is one little lack of communication.

For now, we continue to make people aware, while trying to keep E safe, resisting the urge to never let him out of the house!

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The Art of Making Doctors' Appointments

No matter how many times I go through this, I expect a different result. I expect that, when I need to make three appointments, I'll make three calls, talk to three different people, and put three appointments on my calendar!

It never, ever works out that way.

Ever.

Jay's been having a tough time. He's had a bad eczema flare and he's in pain. It keeps him awake at night, and the sleep deprivation makes it harder for him to handle things during the day. He's full of anxiety and just plain unhappy.

In three weeks, he's scheduled to start a Social Skills Day Camp for kids with Autism. He is in such turmoil about this! He doesn't want to ride the bus because buses are too crowded. He doesn't want to eat lunch there because he's worried that he'll gag. (He used to have reflux but outgrew it. Apparently, he's still anxious about it.) He doesn't like to be outside because of his allergies and because the heat bothers his eczema. Gnats bother his eczema. He won't swim because pool water bothers his eczema. And on it goes.

Yesterday, I thought that I'd see if he could talk to our psychologist, thinking that maybe he could figure out a way to alleviate some of Jay's anxiety.

Our home phone decided to break. We could get incoming calls but the phone didn't ring. We couldn't make outgoing calls. So, I used my cell phone. I could talk for maybe a minute and then it would disconnect. This happened over and over, which just didn't make for a smooth phone call! I finally learned that they now have walk-in evals, which start next week, and then he'll be scheduled with the psychologist, which means no appointment before camp starts.

My next call was to his dermatologist at Children's Hospital. The receptionist informed me that the doctor had moved to Ohio. I said, "Oh no, she can't do that!" The receptionist said, "Oh yes, she just did!"

Ugh. There isn't another dermatologist there, so we'll have to go to another branch to a very popular dermatologist who doesn't have any openings until September.

Great.

Jay's sensory issues make it tough for him to deal with the eczema treatments, so I called his autism doctor, again at Children's Hospital, who helps him deal with those treatments. She didn't have any appointments. We sometimes see a different doctor, so I asked about an appointment with her. She's no longer at our branch.

They told me that appointments for September opened up at 8:00 this morning and I'd better call right at 8:00 if I wanted to get an appointment.

Yes, I know that, all too well.

I called this morning and got the first available appointment...at the end of September.

So, camp should be interesting. I just keep praying for Jay because he really is struggling. Lots of issues with the holiday and his birth parents have been coming up, too, all wrapped up into one big meltdown...

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First Week of Camp

My kids have never been to day camp before, but after seeing how much better E functioned in preschool, I realized that camp would be a good thing for him. So, I signed up all four kids!

Yes, I had dreams of being alone all day long, and having some time to actually get things accomplished. No, I didn't believe that it would ever really happen.

Camp started on Tuesday. J fell apart Monday night and I knew he wasn't going to make it. Day One went well for the other kids; Day Two, not so much.

Nick went to pick them up, and discovered that E's EpiPen bag was gone. Turns out they'd left it at the pool, a couple of miles away!

It's a good thing that it was Nick and not me, because I probably would have had a coronary right then and there. Especially since he'd discovered the day before that they'd locked up E's EpiPen with the other meds, so he didn't have it when they went off to the playground down the street. Nick explained that, if E were to have a reaction at the playground, it would be too late by the time someone ran back to the building to get the EpiPen!

Then E told us that they'd given him a snack. He told them he has allergies and brings his own snack. They told him to eat it anyway. And, for once in his life, my little non-compliant child did as he was told.

One more way to send this momma over the edge...


I spent a few minutes pulling myself together and then I called the director. No answer. So, I sent her a lengthy email. I was polite but didn't pull any punches.

My phone rang five minutes later.

The director took it very seriously, saying that she felt sick to her stomach after reading my email.

Yeah, I can relate.

I told her that we'd done everything we were supposed to do. Everything was in place, but somewhere along the line, there was a communications breakdown. I was angry because we're not talking about a Tylenol here; we're talking about something that can make the difference between life and death in the event of an allergic reaction! And, since it's supposed to be a peanut-free facility, but in fact is not, the potential for E to have had a reaction is very real!

In spite of my desire to take him home and never let him leave the house again, he returned to camp yesterday. He now has an adult buddy who is responsible for carrying his EpiPen and supervising lunch and snacks. (His PCAs also go with him, but those things happened in the short period of time when they weren't there with him!) The director held a meeting with the staff, and also sent out notices to the parents, banning peanuts from the facility, so I feel like this won't happen again.

I'm sure praying it doesn't!

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Catching Up

Our business, Truly Pure & Natural is finally up and running. We've had a good time working on it, even though Nick has done the vast majority of the work. Some people have asked if it's a Multi-Level Marketing company, such as Shaklee or Arbonne, and it definitely is not! It's simply an eclectic collection of natural products that we use and that work for us. We're slowly adding new products that we want to share with others.

GracieGirl and E both had to have bloodwork at the beginning of the week. I dreaded it because last time, E's screams could be heard three counties away! So, I did the wise thing this time...and stayed in the car while Nick took him in. :) Amazingly, he didn't struggle or cry. Nick brought him out to the car and took GracieGirl in. Same result, not even a whimper. I want to get that tech's name and ask for her every time!

E was having blood tests to confirm the skin tests for his allergies. I was hoping and praying that he wouldn't be allergic to almonds because I'd love to be able to use almond flour as an alternative to wheat and other grains. No such luck. The doctor will call us on Monday but the nurse said that he is highly allergic to all tree nuts and eggs. Unfortunately, in E's head, the doctor said he won't die if he eats nuts! So, I've been working on convincing him that the doctor most definitely did not say that. He's been really good about asking before eating anything, and I want him to continue doing that!

GracieGirl's Celiac test didn't come back yet. I'm hoping to hear something on Monday. She's been complaining of a hurt tummy for the past few days, so I'm just praying that the test shows whether or not it's Celiac.

Jay got his sleep study results and he does not have sleep apnea and his adenoids do not need to come out. So...back to the drawing board. I'm still waiting to hear back from the sleep specialist, and he sees his autism doctor in a few days, so we continue trying to find some answers!

I don't even know what to say about E. His behavior continues to worsen. I asked Nick if it was me, thinking that maybe I'm just getting too old and burnt out for all of this. He said that it definitely was not me! (I knew that, but I just had to confirm it!) The good news is that I'm getting support, which means so much. People have suggested things like bi-polar, RAD, and ODD. Hard to hear at first, but now I just want answers. I filled out a 15-page request for evaluation and sent that off. It's just hard because he has such a wonderful side, so I keep thinking that I must have been exaggerating his other behavior, and it really wasn't that bad. But then he gets violent, often without warning, and I'm reminded that things really are bad. I'm just praying that we can find the right help for him because there's a side of him that really is so sweet.

Besides being busy, the other reason that I don't generally blog during the day is that I pay for it afterwards. This time, GracieGirl and E have gotten into the crafts box. Judging by the creative mess they've made so far, I really should be focused on them, rather than on this blog! Off to survey the rest of the damage... ;)

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Doctors and More Doctors!

We've been in full swing with doctor's appointments again. We'd switched allergists, thinking that it would be easier to have all of the children's doctors at Children's Hospital, but we decided to go back to our old allergist. Nate and E went this week and GracieGirl and J are going tomorrow. The allergist said that Nate's asthma is under control but his allergies are bothering him. E's report wasn't as good, and the poor little guy came home with a stack of prescriptions!

Jay saw the dermatologist again, too, and she thinks that some of his problems with nighttime scratching may be behavioral. I'm not sure why she would think that, since the majority of his body is covered with eczema, and I'd kind of think that that's why he's scratching! She wants us to make an appointment with a behavioral specialist through Jay's developmental pediatrician at the autism center. We'll try anything that might help; I just to get to it on my To Do list yet!

Jay had a sleep study a few nights ago. He had some trouble dealing with all of the wires, but he loved the room...the bed with a sleep number mattress, the big, comfy quilt, the large flat screen TV, and lots of snacks. Once he was settled in, he lay back and said, "Yep, I could definitely get used to this!" He paused for a second and added, "It's not because of the TV or even the snacks; it's because there's a bed in here for you, too!" He's so sweet...

He brought his sleeping bag with him because he practically lives in it at home, so that helped comfort him a bit.

Jay in his favorite sleeping bag. I don't know how he does it,
but he walks in it and goes up and down stairs in it!

So, I was selfishly thinking that I might get a decent night's sleep, being away from the nighttime drama here at home. I went to bed at around 11:00pm, got comfy, closed my eyes...and Jay's monitor started going off! The tech came in and turned it off, and once again, I settled in. Three minutes later, it went off again! This time, both techs came in, turned on the lights, started replacing parts on the machine, and finally left. I don't know what the problem was, but this went on most of the night! I was feeling far from refreshed when they woke us up at 6:00am! I'd begged asked for late checkout, just as I'd done during my sleep study, and once again, I was turned down! ;)

I was feeling sad this weekend because, for the first time ever, we missed Sesame Place with the Variety Club. E is really struggling with his asthma, so he couldn't go. He's had a few rough days (and nights!) between the asthma, allergies, hives all over his arm one night, and the little, itchy bumps that are covering his entire back! The allergist ordered blood work for him to check on some of his allergies. Nick thought that these symptoms were perhaps linked to the Cyclic Neutropenia, which makes his white count low every three weeks. If this is the low period, maybe his little body just can't handle everything. I don't know, but I sure would like to help him feel better!

Now we're just continuing to pray that E stays out of the hospital. The treatments aren't helping much, and tonight his breathing was really labored. I still don't feel confident about knowing exactly when he needs to go to the hospital, but Nick is confident that he knows. Prayers greatly appreciated for our little guy!

E decided that the only way to feed the birds is to dump the seed
all over the place, roll in it, pull up leaves and sticks,
and then sit and call the birds to come eat!


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