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.

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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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