Diagnosis

As I'm sitting here getting ready for someone from AEA to come to the house and meet with us regarding Maddie and hopefully getting her into integration preschool, I'm finally reading through the giant stack of doctor letters and notes that I've prepared to give them today.

I guess I've just been thinking of everything as "Sensory Processing Disorder" - but just read through what the official diagnosis is that the psychologist has given her.

Adjustment Disorder with disturbance of emotions and conduct

She also said that she is in the process of ruling out:

ADHD combined type, and
Pervasive Developmental Disorder not otherwise specified

So what does that mean to me? Not a lot right now.

Heartland AEA

We finally got a call back from Heartland AEA today to set up a time for an assessment for Maddie, to hopefully get her enrolled in Integration Preschool through the school system. Maddie needs this so bad, please pray that she will be accepted, get what she needs, and be able to start as soon as possible! They are coming to the house next week.

Bandaid Buns

Today Maddie threw a fit because, well, she needed a bandaid for her buns. She has an obsession with bandaids, and over-reacts when she gets hurt; hence the constant need to put bandaids all over her body all the time.

Another thing she's been doing is making up words, and talking jibberish. She is normally very vocal and has a huge vocabulary, but she's really been taking steps back in that department. I'm mainly noticing this after she's had a meltdown or when she's upset.

Happy Birthday Jackson!

Today was Jackson's 7th birthday!! It's so hard to believe that the kids are growing up so quickly, and that he will start 2nd grade this year! To celebrate, we went to Chuck E Cheese - our family tradition for everyone's birthday. But this year, Maddie's behavior made sense to me. I now know why every single year, Maddie has to ruin "the picture." Yes, the annual picture of all the kids sitting in the Chuck E Cheese moving car. Every year, Maddie refuses to sit in the car, screams, and we never get a good picture.

And, that's about as much energy as I have right now to blog about. ;-P

"I have some brown pee on my pillow, mom..."

This morning, I took Maddie to the hospital for her abdominal x-ray to make sure that the miralax cleared her out. I really don't think it has, because she's had only water diapers since we've started the miralax a few days ago. She's still having about 10-20 total water blowouts a day - I've never gone through this many diapers, wipes, and diaper cream in my life! Today she is also starting mineral oil (5 tablespoons a day), so I'm sure this will only add to the messy disaster! She came down this morning and told me that there's "brown pee" on her pillow. That's not pee, dear. And how did it get on your PILLOW?? Ugh.

After being at the hospital for a couple hours, we went to her OT appointment. I think she did pretty good today, and played a little better when another little boy came over to her. Her OT said that on days that the other little boy isn't there, that maybe Birdy could have playtime with Maddie during her therapy.

On another note, if anyone is selling a BALL PIT (Not the blow up kind, but the pop-up kind that's deep - and with the balls), a PLAY TENT for the girls for the living room, or a couple TWIN SIZE BED TENTS for the girls, I'm looking to buy some. Ebay is outrageous, and I'd rather stay away from craigslist - I don't have time to be abducted by a super creepy craigslister at a local gas station at the moment.

Blood, Sweat, and Tears

Sometimes when people blog, they sit down and think "hmm, how can I make this interesting..." One thing at the Wald house, is that this stuff writes itself!! And let the hilarity (and insanity) begin....

This morning started off with me taking an early morning NRP (neonatal resuscitation) class at the hospital. Luckily, Mike was able to take the morning off to watch the kids while I had my class, and the plan was for me to be home just in time to pick up all three kids and head back to the hospital for Maddie's appointment with the Pediatric GI doctor for problems she's been having with potty training, constipation, diarrhea, and encopresis. Yes, I know what many people are thinking: "Oh, that sounds busy," but that's not what I was thinking. My thought process was more along the lines of "Dear God, three kids by myself in public. Not just any kids, but MY kids. One of which is Maddie. Please just let us survive!! That's all I ask..."

As a quazi well-seasoned mother of three difficult children, two of which are toddlers, I made sure to bring the double stroller with me. The giant, squeaky, impossible to maneuver double stroller. But hey - it has two seat belts in which to restrain children, so it's all good! After nearly running over a few people on the way, we finally made it up the elevator to the second floor at the hospital. So far so good. Then we walked through the office door. There's just something about going through the door into the doctor's office that totally sets the kids off, and everything they have learned their entire life is out the window, and it's every man for himself. Why did I think today would be different? Oh yah, because I'm delusional.

I hate disciplining my children in public with their fire-eyes staring at me, judging my every move, thinking "Dear Lord, do something with your kids." Do something with my kids? OK, I'll do something with them. How about I'll send them to YOUR house for YOU to watch them for a few hours, then you bring them back to me and show me how much better of a job you do! So I did what any fantastic mom would do, and motivated them with Skittles. Chewy snacks actually help Maddie listen and cooperate better, so I figured there was a small redeeming quality in my waiting room choice of motivation. It was 2 hours past Birdy's nap though, so she was about as crazy as could be.

The first thing I told the nurse when she brought Maddie back, was that she was just diagnosed with SPD and that I was totally anticipating a total breakdown in 3, 2, 1.... She made Maddie step on the scale with her shoes off - which Maddie freaked out about being barefoot on their carpet. Then she had her stand to get her height with her feet against the wall, which made her unbalanced and wobbly. I could tell she was getting to her limit before breakdown time. Then it was time to get her temperature in her ear. I'm pretty sure that's what set her off, before complete meltdown. So I walked back to the room, corralling Jackson with my foot, pushing the horrific double stroller, yet still having to carry two screaming toddlers. I should win an award for agility at least, huh??

Sometimes I like to tell strangers "Wow, this is so not like my kids. Must be nap time!" *slow nervous laugh* But who am I kidding - anyone that really knows us, or has been within a 10 mile radius of us, know that my kids scream. Plain and simple, they scream hard and often!

By the time we got to the room, I was sweating like crazy. Two hot screaming toddlers in my arms, carrying enough equipment to live successfully in the woods for weeks, in the middle of a hot Iowa summer. As soon as the nurse left the room, I started shoving paper towels down my shirt (Yah, I'm not too proud to be honest here...) to soak up my sweat before the doctor got in the room, only to be caught red handed by her 30 seconds later as she walked into the room sooner than expected. Great first impression! (And no, I don't always shove my hands down my shirt when I meet new people.)

A few minutes into our visit (with both girls screaming their lungs out), the doctor wanted to do a rectal exam on Maddie. I guess I knew it was coming, but we can't even wipe her after a poopy diaper without 3 adults holding her down - there is no way in God's green earth she is going to let you do an exam on her, I don't care how much of your "magic jelly" you have on your glove. She wanted to wait until Maddie would "be cooperative" to do the exam; but when I told her that we would probably have to come back in 20 years for that to happen, she gave me the "OK, just hold her down and I'll go quick" look. I got hit. I got bitten. I'm pretty sure some of my hair got pulled out. And all of you girls out there with thick curly hair know that when you get hot and sweaty, your hair only gets bigger. Which made me even more hot and sweaty. I'm sorry child for dripping my sweat on top of your screaming face, but if you could only hold still for a bit longer...

*Insert 20 minutes of screaming here, while I play some nice quiet relaxing music and grab a snack*

OK, I'm back.

You get the picture. She then proceeded to tell me that Maddie had a flacid rectum amongst some other stuff. Honestly, she lost me at 'flacid rectum.' After I asked her to repeat everything after the words flacid rectum, she re-told me that Maddie's intestines are totally impacted. Our plan is to start a super Miralax time so that she HAS to go to the bathroom. We'll do that for 4 days, and then we'll start Mineral Oil. After the 4 Miralax days are up, she also wants to do an xray to make sure she's all cleaned out. She said it can take up to a year for her rectum to not be so stretched out, but kids with sensory issues can take a lot longer. She also said that she can't legally be turned away from anywhere because of not being potty trained (ie: school, daycare, etc) because it's a medical condition.

She then proceeded to tell me that she wanted to check Maddie's blood for celiac disease and thyroid as well. The only thing that could top this day off is a nice round of venipunctures! So we head down to the lab to get her blood drawn. By this time, Jackson and Birdy are totally off their rocker. Birdy's grabbing syringes out of the drawer while I'm sitting in the chair with Maddie, when she stopped all of a sudden and announced that she needed to pee right that second. Birdy pulled her pants down in the middle of the room, squatted, and was going to use the middle of the floor as a bathroom. Luckily, one of the lab techs yoinked her pants up and took her to the bathroom real quick for me. Meanwhile, Maddie figured out that they are going to take blood from her arm, swings her hand up at me, and punches me in the nose. Not only have I sweat all over my child today, but now I am dripping my bloody nose all over her head. You know you're a mother of three when the only thing you can think of as you're bleeding all over your child is "but today was bath day - I'm totally not going to wash your hair again today!! We'll just wipe this right up..."

So we left the lab; Jackson crying, Birdy out of her ever loving mind, and Madelyn kicking and screaming at the top of her lungs. When we got to the lobby of the hospital, a sweet little older lady stopped us and asked Maddie why she was screaming. And in typical Maddie fashion, she stopped screaming, looked her straight in the face, and said "They checked my blood for an infection, because I have cancer." Madelyn Paige Wald, none of that is true. We then left, after getting the sympathy vote from a few doting onlookers that I didn't correct because honestly it was nice to have someone give us some positive attention!! (Yes, I'm getting ready for God to smote me - nobody stand close to me when there's lightning.)

That's when we got stopped by the cops at the exit door.

Please, Lord. Why are you doing this to me!??

Do you work here? Where did you just come from? Were you on such and such a floor? What time did you get here? Blah blah blabitty blah!! Do I really look like I just came off a shift with three kids in tow?? I heard people in the background talking about a patient that came into the clinic, something about a knife, a gunshot wound, and there were cops everywhere! (Now I need to watch the news tonight to see if someone got killed at the hospital today.)

The cops finally let us exit the building, and we got to the car. Only to find out that we are blocked in by 6 cop cars. Why would they park right behind a string of cars in a parking lot?? That's when I started crying in the parking lot - I just wanted to go home. Then an older police officer, God bless his heart, came up to me and asked if I needed help. I just shook my head as I got the kids in the car, and he folded up my impossible double stroller and put it in the car for me. (Seriously - God bless this man!!) He then helped me do a 500 point turn to exit the parking spot so I could go home.

Today was filled with blood, sweat, and lots of tears. And life at the Wald house continues...

Brush Brush Baby!

Yesterday, we were able to go into Childserve and be given the brush and other equipment needed to start Maddie's sensory therapy at home while we wait for insurance to preapprove her therapy. She said it could take another week to hear back from insurance, and I am praying all goes well with that!!

Every 90 minutes at home, I am going to do her sensory therapy. This includes brushing her entire body (besides face and chest) with a little brush, rubbing a scratchy washcloth on the roof of her mouth, body joint compressions, and facial massage. We were told to follow this up with big deep movements with her, like giant bear hugs and playing physical activity games, and also a chewy candy like a Starburst. (That's the short version of what we're doing at home) So far, I have noticed a drastic difference in her behavior immediately after the therapy. I don't think I'm as good at doing it, but hopefully with time I'll get the technique down!

In a nutshell....

I'm still waiting to hear back from ChildServe regarding Maddie's therapy sessions starting. If I don't hear anything by tomorrow afternoon, I'm going to call them back and see if there's something holding things up because Maddie needs to start ASAP.

I feel really bad for Jackson this summer - I feel like I've been so busy with the girls, that I haven't had the time to spend one on one with him practicing his swimming. He just finished 2 weeks of swimming lessons, and didn't pass Level 2. He was heartbroken when all of the other kids got their cards, and he got a letter saying the few things he still needed to practice. Hopefully we'll have some time to spend with him this summer practicing those things so next year he will be successful.

I've also had quite a few comments and questions lately regarding Birtukan's hair. I've been working really hard to keep it healthy and moisturized, and so far it's looking pretty good! It gets really dry and poofy during sleep times; I need to get her a silk pillow and also a heavier moisturizer to use during the day. Although I'm not an AA woman and have never done AA hair before, I feel well equipped to take care of her hair. I've done a lot of research online, have a lot of friends with AA children, and have some pretty good products at home for her. My hair is naturally very curly, coarse, thick, and dry - so I think our hair type is pretty similar. I can't wait to grow her hair out long!

History Of Maddie's Home Videos

All of our videos of Maddie seem to have a common theme, from the time she was very small: Screaming, and seeming to do the exact opposite of everything she's 'supposed' to be doing.

We Have A Diagnosis

Today I took Maddie to ChildServe yesterday for an evaluation recommended by the psychologist that she saw for Sensory Processing Disorder. In typical Maddie fashion, the second we got there, she got on her hands and knees and pooped in her diaper. I was really nervous during her assessment, because it was difficult for me to watch Maddie do things that I know border her full blown temper tantrums without stepping in to intervene. The occupational therapist that we saw though had to tell me a thousand times "It's okay if she screams, throws things, etc during her assessment because this is how I can tell what's going on with her. It's okay! It's okay! It's okay!" It felt nice being in a room with someone that recognizes Maddie's problems as something that Maddie is really struggling with - not something that Maddie does on purpose to "be bad."

It was very obvious to the OT just a couple minutes into the assessment that Maddie is suffering from severe Sensory Processing Disorder (SPD) and recommended immediate OT sessions twice a week, along with some things for us to do at home. She said there is a play therapy group with some other girls Maddie's age, but she didn't think Maddie is "ready for public interactions" yet - which made me chuckle, thinking about all of our public Maddie disasters and temper tantrums. But it was nice having a professional agree with me that Maddie indeed is not capable of healthy public interactions at the moment.

Right now, we are waiting for our family doctor to send over an order to treat Maddie after her evaluation and diagnosis. They are going to call me back as soon as they get that to schedule therapy sessions, and she also wants us to start brush therapy at home too - every 90 minutes from waking until 5pm. Also, we are going to start Melatonin to help Maddie get some sleep at night.

It just feels really really good to have a diagnosis and a plan of care from someone that has a lot of experience in this area. I just want Maddie to be able to live a happy life and to have the coping strategies needed for survival and interaction with others. I want to be able to go to the grocery store without a complete scene. I don't want her to miss out on all of life's experiences because anything is holding her back.

I've gotten a few 'eye rolls' talking about SPD and deciding to take Maddie to occupational therapy sessions, but that's okay. I'm fully ready to accept the eye rolls from people that don't understand what we're dealing with, and don't live my life every day and realize how life altering this is for Maddie and our entire family.