Don't Tell Me What I Should've Done

Please don't tell me what I should've done with Tay. My kid is nothing like yours.

She not only has a rare kidney disease, but she also has cerebral palsy. It is a brain injury. It affects her coordination as well as her senses. I could have affected her speech or intellect, but it didn't.

Don't tell me that if I'd only exposed her to more germs or other kids, that she wouldn't be sick. Tay spent the first year of her life under a self-imposed quarantine. On top of not be allowed around other people who could possibly get her sick, we had to fight to get her an immunization series that would HELP should she get sick with RSV. (More info here.) And then, even after our winter quarantine was over on her first birthday, she still couldn't go into a day care or preschool setting until she was two and a half years old. Thankfully, she's hardly been sick and it hasn't been anything really bad, but those first two years were awful. If we went anywhere, we wiped everything down with Chlorox wipes, even swings! I dreaded going into ANY doctor's office for fear of people coughing or sneezing too close to her. And if there was ANY sign of puking, lethargy or any other symptom of possibly having her electrolytes out of balance, we were in the emergency room.

Don't tell me that if I'd only let her get dirty or wet or play, that she wouldn't have the fits that she does and she'd want to get dirty or wet or play. Tay spent the first three months of her life in a hospital. Therefore, she wasn't exposed to those normal, every day sounds and experiences that your child was. My child's "white noise" was the beeping of monitors and machines, not the vacuum cleaner or washing machine. Therefore, the vacuum, auto-flushing toilets, large crowds, sirens are all "too loud." Dirt is "too messy." Water is "too hot" or "too cold" or "too wet," depending upon the day or hour of the day. We have made a TON of progress with her sensory issues, but still, there are times that things are just too much. She has learned a lot of coping mechanisms: running/walking in circles, snuggling, hiding under things, and various other "stims." All of these things help her make sense of the world around her. No amount of "letting her play" is going to change it. Giving her all the opportunities I can to INCLUDE her in things is what I am trying to do. Give her the opportunity to see that sometimes dirt can be fun or water can be fun or any other "normal" kid thing. Believe me, I have tried. Maybe one day. Maybe not.

Don't tell me that "God gives His toughest battles to His strongest warriors" or "God only gives you what you can handle." These are FALSE. They are platitudes said by believers all the time when they don't know what to say to people going through tough times. The Bible is riddled with instances where God used people who believed they were weak and not leaders to lead people. Moses was one such person. He argued with GOD because he felt he couldn't do what was being asked of him. God will give you MORE than what you can handle so you learn to lean on Him.

"For I can do everything through Christ, who gives me strength" -- Philippians 4:13

So please don't tell me what to do with my special needs child. Don't tell me what I should have done with them when they were younger. Unless you have walked in my shoes and dealt with my child, you have no idea. And believe me, when you do deal with her, she will likely be having one of her "good" days. She'll hold it together because she knows that's what she needs to do to get by. But the second she is home, she'll meltdown on me. That is just how it goes. She knows how to hide her invisible disorders and disabilities. She's 4 and she's already figured this out. She knows how the world works. She knows who she can trust.

So don't tell me that I should've have done something different. Believe me, if I could have, I would have. But sometimes, there are no other options.

Firing the Pediatrician

On top of all of our specialist appointments, Princess also had her 3 year well child check up with Dr. M. This turned out to be her LAST appointment with Dr. M because I switched pediatricians.

Princess was scheduled for a 9am appointment with Dr. M. Well, of course after getting Little Man off to school and getting Princess dressed, I felt rushed in getting there. We CAN'T be five minutes late or they will reschedule us. And well child visits are booked AT LEAST two to three months out. (Don't get me started on the whole clinic thing and their scheduling issues.)

We get there about four or five minutes before our scheduled appointment time. I figured that this appointment we might actually make it out in a reasonable amount of time. See, Dr. M usually runs behind. I was warned of this initially. So I figured by being one of the first ones of the day we couldn't possibly be behind! Well, we end up waiting about ten to fifteen minutes in the waiting room. That's okay. I brought our bag of "busy bags" to keep Princess occupied. She colored and was very well behaved.

We finally get called back and do height and weight. I declined the vision screening because we were going to see Dr. R on Friday. We went into the room and did the hearing screening, which Princess actually did really well on. Did temperature and the pulse ox. Then it was time for blood pressure. Surprisingly, the office must have FINALLY upgraded (or someone pitched a fit before I could) because they had literally brand new Welch-Allyn pediatric cuffs! (I could tell they were brand new because they still had the creases in them from shipping!) And the nurse even used the correct sized cuff on Princess! Woohoo! Now we can come in HERE and do blood pressure checks without having to travel AN HOUR to see Dr. K! And the reading the nurse got was about what Princess ran at Dr. H's office, so I figured it was good. (Still a little high and not the GREAT reading we got at Dr. K's office, but within range of what she's been running.) We go over meds and the change in pharmacy (our pharmacy closed because the pharmacist retired). And then the nurse tells me, "Dr. M isn't here yet. You know how it goes. If you need anything just poke your head out."

WHAT? Okay, I know that they sometimes have to go check on babies at the hospital. And this isn't the first pediatrician that I've had this happen with. In fact, the kids' first pediatrician would have this happen, but usually it was on immunization visits. If we were coming in JUST for a vaccine, we would usually be scheduled in the time she was due to be back from her "baby rounds" at the hospital. So I figured it wouldn't be that long.

Of course Tinky Nee and Baby Nee had to have their own chairs.

HALF AN HOUR after we had done vitals, Dr. M FINALLY comes in. She apologizes for being late saying she was tied up at the hospital. (Strike One) Then we get into the routine developmental questions. Some of them I wanted to bang my head against a wall, seriously. Why?

A few months ago, I went by and dropped a copy of Princess's CP diagnosis off to be added to her chart. I feel the pediatrician needs to be kept up to date on all the current diagnoses. So the receptionist took the copy and said they would get it scanned into her record. (Gotta love the Electronic Medical Records!)

Dr. M didn't even MENTION the new diagnosis. I don't know if it's in her chart or if she just didn't bother to look. But that's why I wanted to beat my head against a wall. I mean, pedal a trike? Really? The kid can barely go up and down stairs! There was a prescription for OT and PT on that sheet with her diagnosis! (Strike Two) Not to mention, she doesn't even MENTION if she's gotten anything from the specialists. I don't know, maybe I expect too much, but when the child sees a cardiologist and nephrologist, you would think the pediatrician would at least ASK as to the last time they saw them, was everything okay, or at least mention that they got the notes or something!

Okay, no big deal. Moving on. We get to the actual exam part and Princess just melts down. She doesn't want to sit in my lap or sit up on the "crinkly paper." She doesn't want Dr. M to do "check ups" (listen with her stethoscope) or "eyes and ears" (check with her otoscope). Now, this kiddo had been to FOUR doctors in the past three weeks (Dr. K, Dr. D, Dr. H and a PA about her diaper rash) and hadn't flipped out on ANY of them, even the PA over the rash! (Strike Three)

So when the big screamy fit was over and we had to do the finger pokey for the Hemoglobin test and we were finally done (after I promised her I would change her band aid from the Snoopy one to one of the left over giraffe ones in the car from the lab the previous week), I went to check out and as I was doing so, asked the girl if it was possible to change pediatricians. After some back and forth about who I wanted and being told they weren't accepting new patients over the age of two, I decided on Dr. G. He's a PA, but honestly, if he can manage Princess's specialists and actually treat me like I KNOW something and my daughter like a kiddo who's been to way too many docs and watches way too much "Doc McStuffins" so that she KNOWS what to expect, I don't really care. In fact, Little Man saw him the Wednesday before Princess's appointment due as a follow-up to an ED visit for a high fever and stomach ache. (Turned out to be constipation and not appendicitis.) So I don't know if there's some paperwork or whatever I need to do to switch, but believe me, it ain't gonna be difficult to tell whomever WHY we switched.

This appointment, from the time we got back there until the time we left, took an hour and a half! If you count the 15 minutes we waited in the waiting room beforehand, it was an an hour and forty-five minutes! For a well-child visit! We spent MORE TIME waiting than we did with the doc! So NOT okay in my book. I mean, I understand if someone like Dr. H is behind more than 30 minutes. We at least get warning of that from the board in the waiting room. And you don't know if she's over at the hospital right down the street admitting a patient or talking to a family about their child needing dialysis or something and that's what put her behind. But a pediatrician being AN HOUR behind at the beginning of the day? Nope. Not cool. And being EVERY appointment with her is AT LEAST an hour, it's DEFINITELY time to change.

Hopefully we don't have to go back to a pediatrician for a while. Not that I would mind seeing Dr. G, but I'm really done with doctors for the time being.

Specialists Update

Over the past four weeks, Princess and I have made the rounds to her various doctors. We have seen them ALL! So, here's the round up on them:

Dr. K (Cardiology)
We started off by seeing Dr. K, the cardiologist. This was a short half-hour trip down the hill. Surprisingly, for this clinic, he wasn't full. In fact, we got there and were just about right away ushered into a room. We did vitals and Princess went right along with this. And then came the MOST SURPRISING PART: her blood pressure. For the first time EVER we only had to take it ONCE! It was EXACTLY WHERE IT SHOULD BE!

We also did an EKG, which was perfect. I'm glad I warned her so she didn't melt down over the stickers that had to be put on her chest. And then Dr. K scheduled her for an Echo at his OTHER office on the same day we went down to see Dr. D. Granted, it was in the afternoon and Dr. D was in the morning, but I was more than happy to only have this be on our way back from our appointment two hours away!

So the next week on our way back from seeing Dr. D, we had lunch, played at the park and then went over to Dr. K's main office. There we did an Echo and Princess was just so enthralled by the pictures of "her tummy." Dr. K came in after the technician finished and did a few more scans. He said the PFO she had was closed. (I wasn't even aware of her PFO until a few months ago at her MRI, at least not that I remember anyway.)

But sadly, on this visit, we didn't get to do a "one and done" blood pressure. Instead it was right back where it had been running! After attempting it a few more times, and even manually checking her heart rate (because the machine would give us a great blood pressure but the heart rate would be low), Dr. K said that we could do one of two things: switch her two medications around or go to twice a day on one of them. BUT, he wanted Dr. H to make that decision and since we were going to her after the weekend, he was comfortable with whatever she decided. Then came the GREAT news: "Come back in a year." Yay! Annual visits!!!

Dr. D (CP Specialist)
Princess turned three about a week after we saw Dr. K. That same week, we saw Dr. D, the CP specialist at Shriners. We did this in the morning and on the way back home, we saw Dr. K. Now, we had just seen him about two months ago at our therapy clinic, but this is the "official" visit with him to see how things are going.

As it stands right now, no orthotics. He's pleased with her progress. As we continue to move forward, he said that we would be encouraged to do "community based therapy" which is essentially things like dance or gymnastics, non-competitive type things to help with her coordination and movement. It was a relatively quick visit and we were on our way. Come back in 6 months.

Dr. H (Nephrology)
The Monday following Dr. D, we were back in town, this time to see Dr. H, the nephrologist. Another routine appointment, at least for Princess. Vitals including blood pressure, which was high, yet again. Princess did great. The kids colored while we waited. And when Dr. H did "check ups," Princess was cool with it. Talked about if she goes up in medication, Dr. H would want more frequent blood pressure checks, but we weren't going to go up at that point in time. Also was okayed to give Princess Claritin with allergy season upon us. We did blood pressure again at the end, which was better.

Then it was time for labs. sigh This was about what I expected, except poor girl had to get poked twice. The poor phlebotomist felt so bad that she gave her extra stickers and even came out to give her extra giraffe band aids (yes, they had giraffe band aids!). We do have orders to do a urine sample, but we are waiting to do it until we get this nasty diaper rash thing cleared up....so who knows when that will be. But it will be before we see Dr. H again which is in 6 months! Oh, and it's THE SAME DAY we see Dr. D! Hooray! Piggy-backed appointments!

Dr. R (Ophthalmology)
Finally, we saw Dr. R, the ophthalmologist. Surprisingly the waiting room was EMPTY! I guess Dr. R having to open another day due to caseload was a good thing. Princess did GREAT for the first half of it. She wore the special glasses to check her depth perception. And then played a matching game to check her vision. She didn't even cry that much when they put the drops in her eyes! Then we got to sit and watch "Finding Nemo" until it was time for Dr. R to see us.

Well, I take full responsibility for the melt down that ensued with that. Had I let her choose to sit in the chair by herself initially, things might have gone better. But we managed to get through it. And we don't have to come back for another year! I was told we could try artificial tears for the "sand in her eyes" that she complains about. I know it's not real sand, but it could be that her eyes are dry, they're itchy, or it's allergies. We just don't know.

So all in all, everything is going well with the specialists! Two are at annual appointments and two are at twice a year. This definitely makes things easier on us for travelling and such.

Some Days I Hate CP

Most days, I don't think about Princess's diagnoses. It's just day to day stuff: Medication in the morning, therapy every other week, preschool twice a week, medication at night.

And then there are some days her cerebral palsy is really evident to me. Today was one of those days.

It's our typical Monday. Get up, take Little Man to school, come home and start figuring out the menu for the week so we can go to the grocery store. I'm never entirely sure what our grocery trips will be like. Will they be an adventure or not? Lately, we've been using the little shopping carts and Princess has been able to drive them herself. This works well. I put things in here cart and in mine.

So today, when she got her little cart, she wanted to lead in the store. Okay. No problem. I told her where to go and we were doing okay. Most people stop and watch her because I guess she's just so darn cute pushing that little cart. If they only knew...

Eventually, she quit wanting to lead and started following me. I was fine with that and it was easier on me. Sometimes it's SO hard to walk as sloooooowwwww as a short little nearly three year old.

By the end of the trip, as we were heading to the check out line, she was walking SO SLOW! Being I was ahead of her, I turned around to look at her. As I watched her push her little cart, I could see her left foot turning in and her toe dragging as she walked. She was tired. We had walked all across the store!

Now, I could've gotten mad at her for being so slow, or even stopping to play with all the stretchy cords they use to block off the check stands, but I didn't. This wasn't her fault. It was the CP.

I kept encouraging her as we slowly made our way to the check out line. Not once did she stop or say she couldn't walk or give up. She kept going. And when we got there, she even helped unload her cart! After she put her cart away, she sat on the floor quietly and played with the mirrors and her giraffes while I finished paying for everything.

It's days like today that I hate CP. I hate that my daughter can't be like her peers and run around like normal kids. But this is our journey. As much as I hate it some days, I have to accept it.

Why I Love Our Little Charter School

Little Man literally won the lottery...the lottery to get into his charter school. I had wanted him at this school since he was like 2 or 3 years old and they had an opening for a third grade teacher! Yes, I applied to teach with them, I wanted him in so badly. (Employees and siblings get dibs on open spots!)

So when lottery application time came around last year, I was turning them in the moment I could! I still remember the night we got the call. I was at Bible Study and the kids were with their dad. When we got home, there was a missed call on the phone, but no message. It was from the Charter School! I checked my cell phone and there was a voice mail. He had got in!

This school is small, one class per grade. His kindergarten class is maxed at 24 kids. (Which is 4 more than what they had initially drawn for! They opened up 4 more spots in the summer due to high enrollment in the public schools.) This is so great! Why? Here's a few reasons:

1. They know us!
Okay, I know this sounds crazy, but I like the fact that I can drop my son's lunch off in the office when he forgets, or donate disinfecting wipes, and the secretary already knows who I am. I've only been in the office a handful of times. And the teacher is always telling me things in the pick up or emailing. This is one of the great things about having him at a "small" school. Sure I could've put him the public school where they have more classes per grade and maybe this would've happened, but not likely. Little Man isn't going to be lost in the shuffle of the many classes of kindergartners.

2. My son is academically advanced!
One of the school's "goals" as a charter is to make sure each child is meeting individual academic goals. Going in, I knew my son had just about met all the kindergarten standards. I go to his first trimester conference, yeah, he's met them all. Kid passed kindergarten in the first trimester! But we're keeping him with his peers as he is still a bit behind his peers in the emotional and social aspect of things. But that means that the teacher has to do some quick thinking to keep him involved! Thank goodness for technology! But my kindergartner is telling me about "bossy R" and "bully E" and contractions. Things they don't teach until first grade! And because the school is small, his teacher is able to talk with the first grade teacher and find out what she would like to make sure he knows going into first grade, so she can make sure he hits those milestones.

It's important to me that Little Man continue to grow academically, but remain with his peers. And had I put him in the public school, this may not have happened. He may not have been challenged enough. He may have become a problem child. But that hasn't happened. We are working on his social skills while enhancing his academics. And EVERY break that is longer than a 3-day weekend, he gets homework! And his homework is first grade stuff. AND his teacher sends home the extra stuff! How great is that?!

3. Community Involvement!
Another one of the school's "goals" as a charter school is to get the kids involved in the community. So my son's class picked up trash at one of the parks in town. And now that we are looking at my son's 6th birthday party, we are asking his friends to bring donations for the local animal shelter instead of presents. And surprisingly, Little Man was okay with it! It just goes to show you that kids CAN be involved in their community. They are learning to be productive members of society NOW and learning that even as a five or six year old they can make an impact.

I'm SO glad I picked a charter school for Little Man. It was the best decision I made. And I'm SO glad we won the lottery! Hopefully when Princess gets there, they will be willing to work with her special needs as well as her intelligence. And hopefully by the time Little Man is done there, we'll be able to move him to a charter high school. (It's something that they're looking at now.)