Sunday, April 17, 2016

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.

Saturday, April 16, 2016

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 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.

Monday, March 14, 2016

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.

Wednesday, February 10, 2016

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.)

Sunday, February 7, 2016

Therapy Meeting and Assessment

Princess had to miss a day of preschool because we had to go to "clinic." Okay, so what "clinic" is is essentially a therapy meeting with a doc. Because she is with the Medical Therapy Unit (MTU) through our insurance, this is the time when all the therapists get together and discuss the progress being made.

So, we wind up being the FIRST one for the day! Yay! We attempted to get Princess on the scale. It was a no go. I'm not sure why she is terrified of scales right now, but whatever. Thankfully I don't think we've grown a whole lot lately. We're somewhere around 25lbs or so. We go over our info (they somehow had my home and cell number backwards) and then get ushered into a room with a circle of chairs and a temporary medical bed set up.

In comes our therapists: L (PT) and M (OT), as well as a nurse case manager (not ours) and Dr. D. Yes, Dr. D, our doc at Shriners! It's so good that he does this. So, we talk. He says that we're going to continue to wait to see about bracing. I'm fine with this because it seems to be correcting on it's own. I tell him about the pain issues that Princess has been having. He's not sure what to make of it. He says she's not that spastic, so she really shouldn't be having pain. He seems to think it may be a potassium issue. (I don't think so, as her labs have all be great, though I will mention it to Dr. H when we see her in April.) He managed to check her range of motion on her legs without her even realizing it! I love this man! He knows just enough about kiddie shows to be dangerous to little kids! Talking about the different Paw Patrol characters and stuff. It was GREAT! I then give him the radiologist's report of Princess's MRI. He hadn't seen it yet, but it was as was expected. We're not going to look further for anything, but know that she does have some minor CP. He agrees to the recommendations of twice a month OT (so hopefully Princess will learn to dress/undress herself) and every other month PT (to make sure we're not missing anything as she continues to grow). And after 30 minutes, we are done! We don't have to go back to that "clinic" for 6 months. We'll still see Dr. D in March at Shriners.

Then, once we get home, a little while later, A from the Parent Infant Program of the Regional Center shows up. She's there to assess Princess. I agreed to this to not only get more information to pass on to the school district, but also to see if she was going to qualify for services through the Regional Center. The assessment they used was the same one the NICU clinic used. It was actually quite interesting to see how far Princess has come in six months since the last time they administered the assessment. She totally rocked it! In fact, according to her our rep at the Regional Center, she scored well above where she should be as a nearly 3 year old! YAY! Not that I had any doubt. She's going to be just like her brother in that department.

Then because she missed school on Tuesday, we went ahead and sent her on Wednesday. AND this way, her developmental therapist, J could come see her at school. Because he was a man, and we usually don't have men working in the preschool, the kids totally clustered around him! This of course freaked Princess out and she totally needed a time out once we got to the playroom. But I needed J to see these things so that in his report to the school district, it's noted that she DOES have some issues that would be best addressed by school-based OT. (The OT through the MTU doesn't deal with sensory issues.)

Finally got a picture of them together!
Sadly, after these two crazy days, Princess caught her brother's cold. But snuggling on Friday and running the humidifier at night and I think she kicked it fairly quickly. Now we get about six weeks of just normal routine before we break out the rounds of seeing all the docs!

Linked up on #BloggyBrunch

Monday, February 1, 2016

January Goals Recap and February Goals

So back at the beginning of the month I mad a goals post. Well, now it's time to recap them, as January is over and make new ones for February.

Here were January's Goals:

So let's go through them:

1. Blog at least once a week. -- Well, I got in 5 posts this month for this blog and 7 posts in my other blog. So I would say I met that one!
2. Write Bible verse daily. -- Total fail on this one! I only managed to do it for the first day.
3. Read at least two books. -- Another failure. Oh well. I'll just have to read more in February!
4. Redo blog pages bar. -- I actually did this over on my other blog. Now to actually figure it out for this one!
5. Donate to the church. -- Yep, did this one!

So all in all, 3 out 5. Not too bad for my first time attempting this whole goal thing. One thing I did start doing that WASN'T on my goal sheet was creating "title graphics" for my blogs. And I've been using those graphics on the Facebook page as well! I really like them and I'm glad I saw Pam at Hodge Podge Moments do so it gave me the idea!

Now onto February!

Define it
1. Daily Bible reading. -- This will be starting at Lent (10th)
2. Weekly blogging. -- Minimum of 4 posts on BOTH blogs!
3. Daily cleaning routines. -- Described below with photo.
4. Daily journaling.
1. Read two books or more.

So here's my goals for the month:
1. Blog weekly on both blogs, or a minimum of 4 posts for the month.
2. Make sure I put posts on Instagram and Facebook pages.
3. Figure out a drop down menu thing for this blog.
1. Read the Bible daily starting on Ash Wednesday. (Note: Must find Lenten Bible reading plan.)
2. Post #RethinkChurch #Lent2016 Photo a Day challenge on Instagram.
3. Journal daily.
4. Read two books, or more, as I'm behind already.
5. Get homeschool materials together for Princess.
6. Daily cleaning routines.

I promised a little more about that one. So here is what I'm doing:


I found this great calendar on Drops of Learning. It's the Motivated Moms Chore Planner. But it costs. (Yes, I know it's only $8.) I'm all about the freebie! I HATE spending money on things that aren't "necessity." So I created the above weekly planner page. That one is for this week. It's based off of the Fly Lady Method. So I left spots for the daily "zone missions" and put in the "weekly home blessing hour" items and even some "deep cleaning" items. Along with the daily tasks are basically the "baby step" routines.

Oh, and yes, I know Princess is IN preschool, but she does so well with directed tasks, that we're going to supplement at home too!

So those are my goals for the month and the recap as well.

Linked up at Monthly Intention!

Friday, January 29, 2016

World Rare Disease Day 2016

World Rare Disease Day is one month away! This year it happens on February 29, the rarest day of the year!

I'm not sure what, if anything, we are doing for Rare Disease Day this year. This may be the most we do is this blog post and change the profile pictures on Princess's Facebook Page and my own. Why is it that I'm not sure if I want to do anything for Rare Disease Day?

Well, there's a few reasons to that. Even though Princess is in preschool and we could get a lot of support from her friends and the parents, I'm not sure it's worth it. It's kind of difficult to explain things like this to preschoolers.

On top of that, being the parent of a child with an invisible rare disease is lonely. Yes, I have found a few people online who have children who also suffer with the disorder, but there are only 4 of them. So it's pretty lonely when your child has a disease that no one even knows how prevalent it is.

I follow a lot of kiddos on Facebook: preemies, kids with kidney issues, other rare diseases. Every time one of them has blood pressure or potassium issues, my heart skips a beat. Might I be able to help another family get a diagnosis? Might there be another child somewhere with this disorder? Sadly, most of the issues appear to be related to other disorders or problems.

Princess's illness is invisible. It's controlled by medication. On occasion, I've been able to talk to other parents. I try to avoid saying the mouthful that is her diagnosis. I don't know why I do that, but I feel it's easier if I just break it down for people as to what it truly is. Sometimes I relate it to a food allergy. But it's not a food allergy, but that's kind of the closest thing that I can relate it to so people understand. She wouldn't get sick as quick as with an allergy causing anaphylxis. Sadly, I don't know how quickly she would retain potassium if she wasn't on her medication. It's not something I want to find out. Hyperkalemia usually is diagnosed because of something else. The symptoms of muscle fatigue, weakness, heart arrhythmia, nausea are usually symptoms of lots of things. So it's not like she would necessarily show symptoms. And besides, with here CP, the whole muscle weakness thing is difficult to tell anyway.

I'm not sure what to do as Princess gets older either. Is she even going to want to tell her classmates why she can't have bananas or pizza or french fries? I guess I'm going to leave it up to her as to whether we ask her classmates to wear jeans or we make ribbons to pass out. So I guess we are in a transition phase right now. I did create new profile pictures through Global Genes. And I'm contemplating the "Denim Dash" but maybe not this year. Maybe next year, being it's a virtual 5k.

This is my profile picture on my personal Facebook page.

This is the one for Princess's Facebook page.
But beyond those things (and a Facebook cover I created) I'm not sure we're going to do much this year. It's just hard when you feel like your child is the only one who has a disorder, even though 1 in 10 people will be diagnosed with a rare disease in the US. This does include types of cancer and more "known" rare diseases like cystic fibrosis, malaria, Alzheimer's, cleft palate and lip, Ehlers-Danlos, any number of chromosomal deficiencies and even cerebral palsy! The reasons why there are more "known" rare diseases on Global Genes RARE List is actually quite simple: In the US, "rare disease" is defined where there is a prevalence of less than 200,000 cases. Disesase such as malaria are quite common in parts of the world, but considered rare in the US. And diseases such as cancer and Alzheimer's are not rare as a whole but do have certain forms that are considered rare. So being "rare" doesn't mean we are alone, but some days it sure feels that way.

Linked up at #bloggybrunch

Friday, January 22, 2016

Even We Have Our Bad Days

I often feel like the special needs community makes a big deal about the parents being "Super." They juggle appointments, therapists, medications, equipment and the way the Internet makes it seem, we all do it with ease. But what you don't see are our bad days. The days where we just want to cry (and sometimes do!). The days where NOTHING goes right. The fights, the meltdowns, the screaming, the crying, the spills, the leaks. Even we have our bad days.

Yesterday was one of those days where NOTHING went right. I felt like an awful parent. I felt like I wanted to go hide in my room. And the thing was, it actually started really good!

Little Man got up and after ten minutes of watching TV (yes, I let him watch TV in the morning before school to help him wake up), he wanted breakfast! He was then ready to go to school by 7:15 in the morning! This NEVER happens. Who was this kid? We were out the door by 7:25 because I had to get Princess up. He was one of the first few at school and there was NO line to drop him off. I totally thought it was going to be a good day. I was wrong.

It started when it was time to get Princess dressed. See, Princess can't really get herself dressed or undressed and she's almost 3. There are things she should be able to do, but can't and things that I believe she can do but is so flipping stubborn that she won't. She will be receiving OT twice a month to help with this. So I decided to start before we have OT in place because there is a plan in the way things are done while we are AT the therapists. The main therapy will happen at the beginning and end of the session. Princess will take off her clothes, get to play and then put her clothes back on to go home. I know, sounds weird, right? But we were advised to get a leotard or swimsuit for her to wear. (Luckily we found her a short sleeved and long sleeved pink leotard at Walmart in her size and didn't have to find a dance store!)

Well, I wanted to start early with this "getting dressed/undressed" thing so we're not taking HALF the time getting undressed and HALF the time getting dressed and then there's NO TIME to play in between. (Playing is the reward for getting undressed.) So we decided to make her a sticker chart because she seems to be motivated by stickers.

So, back to yesterday. It was a NIGHTMARE getting her dressed! It literally took us 45 minutes! We almost didn't go to school! There was screaming, crying, bribery, everything. I felt like the WORST mom in the world! But we did manage to get to school. And she got to share her stuffed Everest because she was the helper. But beyond that, I think school was just too much stimulation for her yesterday. See, it's "Circus Week." So this week, we have a bunch of circus themed games in every room. The kids can have popcorn for snack. We even have a mini bounce house! And they are given tickets and if they want to, at every station, they can trade their tickets for prizes! Well, this was Princess's second day of preschool this week and I think after the first day of "go where you want, no schedule," the second day was just too much for her. Granted, I was able to sneak out and go grab a mocha because I felt so bad and she was hiding under the slide playing with her tickets. She wasn't interested in trading in the tickets, she just wanted to play with them. And then when I cam back, she was more interested in the things we usually have out, like the light table and the puzzles, than the games. She primarily stayed in the room where there were the least amount of kids. And when we went outside to play, she just wanted to sit on my lap and snuggle. Then she didn't want to leave!

When we got home, we watched some "Paw Patrol" and she seemed back to normal. We went outside and blew bubbles and she even let me use my new leaf blower. She went and sat on the steps into the house while I did it. And when we picked up her brother at school, she definitely seemed like everything was okay!

Then after Little Man was home, she started "denning." She hid herself under the dining room table, under the blanket, and then under the trampoline with all of her stuffies. Yeah, she was having an overwhelmed day, even though her brother wasn't being loud or anything. She took a late nap and then when she woke up and I was making tacos for dinner, MeMe had to hold "Tinky Nee," her giraffe, because he didn't like the noise the cheese grater made. She hasn't done this in a long time. She had figured out what that noise was and would usually come and ask for cheese.

When I got her into bed, I hoped that today would be a better day. So far, it seems to be. We skipped gym because it's been raining all day. And otherwise, we've just had a calm, peaceful day with puzzles and games. SO much better than yesterday!

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Saturday, January 9, 2016


This past Monday, Princess had an MRI. It was requested by Dr. D. It WAS scheduled back around Thanksgiving, but with the weather threatening snow that day, I postponed it until after the holidays. We dropped Little Man off at school and then headed down to the Children's Hospital, two hours away. Sadly, because Princess couldn't have anything to eat or drink, we had to skip our mochas that we usually get when we make the trip.

I will admit, I was nervous going down there. Not because of what the MRI would mean. This MRI was her second one. Her first one had much bigger implications. It was of her heart and torso. And essentially it was one of those if we don't find anything, she'll go home, but if we do find something, she'll be immediately air-lifted to Stanford and face immediate open heart surgery. To say I was a nervous wreck for her first MRI at 3 months old is an understatement!

This MRI was of her brain. I was nervous about because she would have to be sedated. They sedate children under a certain age for tests like this because they can't hold still. Any time a child goes under anesthesia, it's scary. And being she's so little, it scared me even more.

She got to wear her jammies there and when we got there, I filled out the form, which was essentially 35 ways to ask if you have metal in or on your body and the small part about kidney problems. Of course, we have kidney issues, so I had to mark yes on those, but they weren't using contrast so it wasn't a problem, nor had Dr. H nor D. K seen a problem with her having the MRI. So we met with the Anesthesiologist and she told me that there was a small chance that Princess would need to be intubated, but likely not. The most she was anticipating was something to keep her tongue away from the back of her throat, but even that might not be necessary. The scan would take about 40 minutes and then she would be wheeled into recovery. I was okay with this. And on top of it, I was going to get to go back and be with her as she fell asleep AND be there when she woke up in recovery.

After the Anesthesiologist came Child Life with her bag of doctor tools. Princess recognized all of these, save for the mask, which she wanted to put on Tinky Nee. After playing for a few, it was time to go back and get ready. Man, I wish I had their sleepy medicine. Princess was out in like a minute! They even gave Tinky Nee his own mask (which happened to be a preemie sized one!). They did her IV after she fell asleep and when the Anesthesiologist came out to refill her water (while her partner was watching over Princess), she said that it went in well. There's always a concern with NICU kiddos as they usually end up with so many IVs and PICCs that their veins are shot for years! The nurse managed to get her medic-alert bracelet off and brought it to me after she was asleep too. We had tried the night before to take it off and she had had a meltdown over it being off.

After she was back there, I went and found a bathroom and mocha. Wasn't the best mocha I had, but better than nothing! This was view in the waiting room, which THANKFULLY wasn't at the front of the hospital! Her last MRI had the waiting area right in the main entrance. How wonderful for families to see this pacing mama...Right around 45 minutes or so, she was wheeled out and we headed for recovery.

The Anesthesiologist said that they had to give her a second dose of meds because she woke up in the middle and when she told Princess "It's okay, baby," Princess responded, clear as day, "I'm not a baby!" Yep, that's my girl! So it might take her longer to wake up. She also came out on an oxygen mask and with a breathing treatment ordered. She had just gotten over a cold the previous week and had sounded a little gunky coming out. Thankfully, we didn't need the breathing treatment. They also wrapped her IV in pink coban with purple hearts. She of course had to have freshly painted pink toes for her MRI, and I told them she was a diva, so it just made sense!

It took her about an hour and a half to wake up. This is not surprising. The girl was in her element: hospital noise! I swear it is her white noise! But while we were there, we managed to get a blood pressure that was JUST ABOUT what the nephrologist wants it at:

I had to take a picture because no one would believe me if I didn't! While she was out, I got Child Life to bring us a Beads of Courage update. And then I picked her up and she woke up! She got to have a pink Otter Pop (must find out where to find these for summer!). And then we got take all the stickers off, take the IV out, put our shoes on and go home!

We stopped for lunch for me and something to drink for Princess and then headed home. Thankfully, MeMe was off of work so she picked up Little Man from school because by the time we got home it was almost 4:30pm! It was such a long day! We had Taco Bell for dinner, as I was exhausted from driving all day. The kids had popsicles first, which sadly made Princess messy. That whole poke a hole in the cup and put the stick through thing does NOT work if the popsicle melts! It just runs down the stick!

After dinner and giving Princess a bubble bath, she got changed into fresh jammies and then we put her new Beads of Courage on her "Special Jewelry." She got a black "pokey" bead, a dark green for being NPO for overnight, a light green for the MRI and a fish for having to travel two hours to get there. This was her first OFFICIAL Bead update since leaving the PICU two years ago. All the other beads between her Act of Courage Bead and her new Fish Bead were earned through the Beads of Courage Facebook Page.

It did take Princess till Tuesday afternoon to completely rid her body of the fluids she was given. She was puffy the morning after. But this is to be expected, I guess, because she has kidney disease. It can take her longer to get rid of excess fluid.

The report on the MRI was posted a couple days ago to her MyChart online. According to the person who read it, it was "unremarkable." This isn't surprising to me. Her Cerebral Palsy is very mild. One of the reasons we were doing this MRI was to make sure the insurance didn't question the diagnosis and just to cover all the bases. We'll see what Dr. D says when we see him though. Maybe he'll see something different.

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Sunday, January 3, 2016

Goals for January 2015

Since everyone else is posting their New Year's Resolutions, I figured I'd better jump on the bandwagon. Well, not really. These are only my January Goals. The whole New Year's Resolutions never seem to work. It's something like only 4% of people actually make it past January. (Not sure on that statistic or not. Someone can correct me, if they'd like!)

So here are my goals, thanks to Pam at Hodge Podge Moments and her Monthly Intentions, I have this cute little printable.

I actually printed it twice! Once full size and once half-sized. The half-sized one is the first page in my journal.

So here's my January Goals:

Blog at least once a week.
Write Bible verse daily.
Read at least two books.
Redo blog pages bar.
Donate to the church.

So, as you can see, I am going to be working on the blog just a little bit. Not much. I'm hoping to have stuff to blog about at least once a week. And I'm going to be redoing the pages bar at the top. So be on the look out for that!

I'm also doing this really neat Bible Verse writing plan. Essentially, they are short verses of Scripture that you hand write, hence the need for the journal. That, and I restarted the One Year Bible Reading Plan. This year I INTEND to finish! And I pledged a monthly donation to the church, so once I get paid (usually around the beginning of the month), it will be the first check I write (okay, maybe second, as I've got to pay the preschool too).

So those are my goals for this month. I hope I can meet them!

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Saturday, January 2, 2016

Year End Round Up for Princess

Here is our Year End Round Up for 2015:

Trips to Sac: 6
Trips to YC: 2
Therapy Sessions: 50+ -- Princess receives weekly therapy, plus we added 3 more therapists, 1 though is redundant.
Dr. Appointments:  A LOT!
Specialists Seen: 4 -- We added 1 new one this year.
Ultrasounds: 2, thankfully done the same day!
ER Trips: 1!!!!!!! Hooray!!!!!!!!
New Diagnoses:  2
Hospitalizations: 0!!!!!!!!!

Princess graduated from NICU Follow-Up Clinic!
She was diagnosed with Cerebral Palsy (CP) and Sensory Processing Disorder (SPD).

After her next birthday, we will no longer be seeing J, our developmental therapist. We also will no longer be seeing M, the OT through the county special ed department. She will no longer qualify to have her gym class paid for, but we will likely continue it, as it's only $7, we just probably won't be going as frequently. But we will be continuing with the medical based therapy with L, the physical therapist and M, the occupational therapist.

On Monday, she's scheduled for an MRI of her brain. It's to "verify" the CP diagnosis. I'm not sure if we're going to see anything on it or not, but it's more to make sure the insurance doesn't stop her services.

Also coming up in the next few months, the school district and regional center will be assessing her to see if she falls within their range to receive services. It's likely that she won't qualify except for maybe school based OT for the sensory issues, since the medical unit doesn't deal with them. Also coming up, we make the first quarter rounds with all the docs. Some we only see once a year (Dr. M and Dr. R), some we see twice a year (Dr. K and Dr. D), and then we see Dr. H quarterly.

But God continues to watch out for this little girl. At our last PT visit with L, she said that they would like Princess to be seen on their "clinic" days. I'm not entirely sure all that goes on, but I do know that a medical doctor comes in and we meet with her therapy team. It's every other month. Well, it turns out that Dr. D from Shriners is the doctor that comes to the location Princess is being seen at! So it means that we'll be able to get additional therapy, any medical adaptive devices, or other services taken care of much quicker than having to wait to see Dr. D at her bi-annual appointment.

So all in all, 2015 was a good year for Princess. We are two years out of the hospital and hope to stay that way! She's in a preschool that she enjoys and works well for her not only socially and academically, but also with all of her issues. And pretty soon, she'll be 3. It's hard to believe that this little tiny tyke is going to be three years old soon. She's such a warrior.

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