Friday, August 30, 2013

God's Plan Being Revealed

Today, we went to the endocrinologist. This was on the recommendation of the nephrologist. Well, we got a diagnosis for Princess: pseudohypoaldosteronism type 2 (PHA2).

Here's what the National Institute of Health's Genetics Home Reference says about it:
Pseudohypoaldosteronism type 2 (PHA2) is a condition characterized by problems regulating the amount of sodium and potassium in the body. Sodium and potassium are important in the control of blood pressure, and their regulation occurs primarily in the kidneys.
People with PHA2 have high blood pressure (hypertension) and high levels of potassium in their blood (hyperkalemia) despite having normal kidney function (normal glomerular filtration rate). The age of onset of the condition is variable and difficult to pinpoint; some affected individuals are diagnosed in infancy or childhood, and others are diagnosed in adulthood. Hyperkalemia usually occurs first, and hypertension develops later in life. Affected individuals may also have high levels of chloride (hyperchloremia) or acid (metabolic acidosis) in their blood. People with hyperkalemia, hyperchloremia, and metabolic acidosis can have nonspecific symptoms like nausea, vomiting, extreme tiredness (fatigue), and muscle weakness. (website)
So this explains everything. We knew the hypertension was causing the damage to the heart. The treatment for the PHA2 is one of the medications she is already on. She's on such a minuscule dose though, so I suspect we will be going to a therapeutic dose of it probably on Tuesday when we see Dr. K.

This condition is rare! They're really not sure of the prevalence of it. My mom has been doing research on it and has found things about it that were published LAST YEAR! They've known about it for about 35 years, but are just starting to find out the genetic background for it. There's probably going to be more that's found out about it in the coming years as it is related to hypertension and there is money going to hypertension research.

Anyway, why did I title this "God's Plan Being Revealed"? Well, had Princess not been born premature we may never have known about this at all. She could have died of SIDS that would have really been the cardiomyopathy, the hypertension, a heart attack, a stroke, the hyperkalemia, anything really. But instead, God saw fit to have her born premature so that the doctors were watching things like her blood pressure and her renal function right from the moment she was born. She has already brought Glory to His Name. So no matter what happens, it's okay. No matter what issues she has, we'll be fine. She may not be that tall, but that's okay. She may always have to be on medication, but we'll live. By all means, it could be a whole lot worse than what it is. At least this disorder is treatable. We'll just continue to take it day by day and see what happens.

Yeah, I was totally shell-shocked to have this huge phrase thrown at me. And yeah, I had a moment of "this poor child is going to have to be on medication the rest of her life." But my God is with us and He will see us through. No matter what happens, we're going to be okay.

Wednesday, August 28, 2013

Trip to Stanford, Day 2

Friday morning, we were up at 6. We went down to breakfast and after getting something to eat, we packed things up and checked out shortly be 8. Our first appointment was with GI at 9. Well, of course we got lost on the way. We wound up finally getting there around 8:30. We parked in the hospital garage because the Heart Clinic is actually in the hospital. We hiked across the street and made our appointment with plenty of time. We were called into the room, they did her vitals but couldn't get a blood pressure. What a surprise! Her weight was 11lbs 4oz! She was almost 22in long! Wow! What happened to my little girl?

The GI nurse practioner was nice. She listened to our history and understood when I told her that the reason we were here was because we had the appointment across the street and the pediatrician didn't like the fact that we didn't meet with the local GI clinic until September. She told me we could start actual food at 4-6 months adjusted. Also said that we should start milk products around a year adjusted. Said we could do dairy products but also bread and crackers before whole milk. She said the bread and crackers actually had dairy in it that was more broken down than something like yogurt or cheese. So that makes me feel better.

So afterwards we headed across the street out the back to get some mocha at Nordstrom. We were there so early that we heard their morning team meeting! So after we had our drinks, we headed over to the hospital. That was a whole totally new experience in it's own right!

For one, we had to check in and get photo ID sticker badges! WHOA! Okay, so it was kind of nice that both kids got my picture stuck to them. Kind of like the whole "if found return to" idea! So then we had to go into admissions because Princess had an echo scheduled. Okay, well then we were there way early because Princess's echo wasn't scheduled until 11:30. Mom had thought about going and meeting up with Owen, but the school was on the 3rd floor and it was just going to be too much hassle to go and track them down. Beside the fact, I didn't want to disturb him in kindergarten. Kindergarteners have a short enough attention span and ones who are going to school in a hospital have got to have bigger things to worry about than just school work.

Fortunately, this is a children's hospital. So they try to make things as kid friendly as possible. So it turned out that there was a train a short distance from the Heart Clinic. Little Man actually liked the train. I have no idea why. There were buttons on side that made train sounds and made the little lighthouse light up.

So around 10:50 we head into the Heart Clinic. I knew there might be paperwork, but I wasn't sure. We had filled out a bunch at GI, so I wasn't sure what we were going to have fill out. There wasn't anything outside of a consent to treat there. They had kiddie masks there at the desk, so I snagged a few. I know at some point this RSV season Little Man will get sick. So in order to hopefully help keep us healthy, he'll have a mask. Try finding child surgical masks. Go ahead. Go down to your local pharmacy and see. You probably won't find any. Well, around 11 it was time for Princess to be fed. So I set about feeding her. I get an ounce and a half in her and they call us for vitals. She weighs 11lbs 3oz now! They get her blood pressure and it's 115/82! Oh the humanity! Okay, so we get ushered back out into the waiting room and I finish feeding Princess.

Then shortly after 11:30 we get called in for her echo. So they wrap Princess all up and she HATES it. Thankfully they have baby candy for her, so I dip her binkie. Now here's the thing, they WANT her to fall asleep! So here Mom and I are on one side of the bed and the tech is on the other side. I'm on my knees most of the time and the other part of the time I'm in a chair. Being we hadn't been here before, we had to do a full echo. I forgot how long the first echo was! At one point, they had to do the carotid artery in the neck and I wound up sitting there with my arm under her neck, propping her head back. Oh it was agonizing! Then, once the echo was done, we had an EKG. Well, it took longer to put all the stickers on her chest than it did to do the EKG! Then we were ushered back into a room.

We must have sat in that room for 45 minutes just waiting! Mom was starting to get annoyed. Remember, I had been called saying that Dr. R wasn't available. Finally, after about 30 minutes or so, the nurse came in and said that the doc had just gotten out with his other patient and was reviewing Princess's chart. Okay, so maybe soon. I told Mom that the doc might have to read everything from Dr. K and she said we could be there until next week! (Yeah, Dr. K is a little OCD.) Anyway, so finally, the door opens and in walks the doc. It's Dr. R! I told him I was surprised to see him because they had called saying he wasn't going to be in. He then said that he would have to check with the front desk people because they probably called the wrong patients! So he examined Princess and she was just a little flirt! He would touch her tummy and she would giggle and then pout and then giggle again! She even put her hand on top of his! It was so cute!

So I gave Dr. R the run down and he essentially said that we were in good hands locally. She would probably always have an athlete's heart. But that he did want to see the blood pressure better controlled. He would let Dr. K know that and if we weren't better controlled by a year adjusted, he would see her again, but otherwise, she was in good hands. Oh what a relief! I'm SO glad and so thankful! Not many kids go into LPCH and are told "You're fine. We don't need to see you again." This was the absolute best news possible! Praise God!

So after we got out, we found Little Man out at the train with Pops. We then went out to the car and didn't have to pay for parking because when we checked in they gave us a pass! Well, by the time we left the hospital and got on the road it was about 2:30. Oh Heavens! That was a nightmare! We wound up in traffic. Okay, so seeing Dr. R was definitely worth the wait in the room. He was the one we were sent there to see and is the LEADING pediatric cardiologist specializing in cardiomyopathy, but did he have to delay us so much to put us into traffic? Oh, it was agony! We all had skipped lunch and Little Man was crazy hungry! No matter how many Cheez-its he ate, it didn't help. Finally after 2 hours, we were at a stopping point, mainly because I HAD to go to the bathroom! Then me being a mom hit. Let's see, went to the bathroom at Panda Express. We decided to eat there, so I got mine and Little Man's food. (Mom and I were going to share.) Then I had to go out to the car to get Princess's medication. Gave her the medication and then had to shake her bottle. Thankfully Mom fed her, but then Little Man had to go potty. By the time I sat down to eat, my food was cold. Oh well.

So then we got back on the road and it was about another 4 hours before we got my mom's house. We had MORE traffic and it was an hour further north from our house to my mom's house. We stopped at Starbucks and hour from Mom's house and Little Man got an apple juice while the rest of us got decaf mocha's. Oh we so needed them! We got to Mom's house around 8. Pops took their sitter home and I got Little Man into bed and Princess in her jammies. It was a very long day and we all just hung out at the house on Saturday. It was a much needed rest after the craziness that was Stanford.

Thankfully everything was good. I can't believe our good fortune. Every so often I am just blown away at how God has shown Himself in our little family. Princess is truly a miracle. And there are so many things that could have happened to her that haven't. I look at her sometimes and am just blown away. I sometimes wish she looked or acted sick because then it would be easier to wrap my mind around it. Instead, all of her issues are internal. So it's sometimes difficult to look at her and remember that she has all these 'ologists following her. Then I remember than any one of these issues that she's had (the hypertension, the hyperkalemia, the cardiomyopathy), if left unchecked could have taken her from this world and it would have been ruled SIDS. How fortunate we are that our pediatrician decided to send her to Dr. K. Had she not, Princess may not be here. How blessed we are to have everyone in her life looking out for her.

Tuesday, August 27, 2013


I hate immunizations for the kiddos. It just kills me. Today was Princess's second round of 4 month immunizations. Never mind the fact that she is 5 months tomorrow. Why a second round? Well, I've never been really comfortable with the amount of immunizations they give kids at the same time. Little Man's first pediatrician, Dr. C, only believed in giving no more than 3 at a time. When we moved, he had to get his 6 month shots. We didn't have a pediatrician right away, so we went to county health. Poor kid got so many shots!

Now it's Princess's turn. Well, when she had her 2 month shots, she was still in the NICU. She was attached to monitors and had a nurse hovering over her. (This was also a pretty bad day for her in general, as her GI bleeding started that day AND they wound up stopping her feeds.) But now that we are outside the hospital, it just makes me nervous to give her so many immunizations at once. Call me an over-protective preemie mom, but it just scares me. Thankfully, Princess' pediatrician is okay with us doing 2 a week. I guess I'm not too overly cautious, because some parents do one a week! As we were getting ready to leave for the pediatrican's office, I decided to change Princess because she had had the big ole reflux spit-up during her last bottle. So I lay her down, changed her diaper, and go to put on a new shirt and she spits all over that one! So we try again and again it's the same thing! So three shirts later, we are finally out the door! Of course, when we get there, Little Man trips and scrapes his arm. So Princess got passed around to the front office ladies while I cleaned him up. Then, as we're back to get weighed, I realize that Princess has pooped. Oh the humanity! Then, bad mommy that I am, I forgot her shot records! They were in her binder and I had carried them with me to Stanford and everything! But I had taken the binder out yesterday to run to the grocery store. And on top of that, I forgot to get out the binkie before she got stabbed! Poor kid! I am SO making her baby candy for her next round!

Now that we are home, and she's had a good nap, she's starting to fuss that she's in pain. So I gave her some baby Tylenol (she can't have Motrin). Oh that was a new world of mess! I hate syringes now. I think if she needs it later before bed, I'm putting it in the nipple-doser.

I'm SO not looking forward to the 6 month shots. There will be 5 of them, PLUS the flu shot twice, PLUS the RSV shot (wherever she is getting that from!). Poor kid will get stabbed 8 times over the course of a month and THEN have to go back every month for the remainer of the RSV series. She is SO getting baby candy! (So you know, when I talk about baby candy, I'm simply talking about corn syrup and baby water. It's essentially sweet-eaze like they use at the hospital, but homemade. It's not going to hurt her. It's just a few dips on her binkie. It's a hospital trick to help aid with the pain.)

Bachelor Weekend

So while we were off at Stanford (Day 1 and Day 2), Hubby had the house to himself. Since we decided to just stay at Mom's house for the remainder of the weekend, he had 3 whole days to himself! Well, most of it was spent working on Friday and Saturday this happened:

Hubby and my FIL fixed the crazy fence. They literally had to disassemble the WHOLE thing and fix it. It was that crazy! Yes, the temporary fence is still up because they have to do the end next to our house. I'm not sure if they're going to do a gate or not. Then Hubby came to church on Sunday. He is the second in command when it comes to the sound booth at church and since the leader of the tech team was taking the weekend off, it was probably a good thing that we weren't there. This way, Hubby just had to get up and get himself ready and leave when he needed to; he didn't have to wait for us.

Now of course, with us not being there, that meant that Hubby could do what he wanted to do, or not do other things, like empty the dishwasher. Oh well. No big deal.

While we were at church on Sunday, I guess my FIL came over and finished the fence. Well, he also brought us a HUGE watermelon, a cantaloupe and this:

Yes, that's a HUGE box of jalapenos! Now here's the rub: Hubby is the ONLY one who likes them! He can literally eat them by biting them. (Think the way Uncle Si did in Duck Dynasty when the brothers were trying to eat hot peppers. Yeah, like that!) I guess my FIL thought we needed some jalapenos. Well, after two days of smelling them, Hubby finally took the WHOLE BOX to work. I guess one of his coworker's has someone in their family who makes jalapeno jelly. He snagged a few out of there and they are near the sink, which is fine, but I'm glad he took them to work. I had NO IDEA what to do with ALL those jalapenos! They were just going to go bad before he ate them all.

At least Hubby's bachelor weekends are mild in comparison to some other married guys. At least the house was still in one piece and not completely destroyed! Hubby usually cleans when he's home alone, but obviously the fence was more important. I'm just glad it's almost done. It's been needed for the past 3 years.

Monday, August 26, 2013

Trip to Stanford, Day 1

Last Thursday, we headed off to Stanford. Princess's big clinic day wasn't until the next day, but because her first appointment was at 9a, we decided to leave the day before. I had written a massive list of things to bring. Most of them weren't any different than when I go to my mom's house, but I went into detail so I wouldn't forget anything. I had things like formula, baby water, medications, a dozen diapers, etc. I usually don't write these things down because I just bring them with me. I also had to bring the stroller, and the pack 'n' play. I don't usually have to bring diapers or bring some place for Princess to sleep, but being we were staying in a hotel, I needed to bring all these things.

We went to Target, so I could get a few of the things we needed and while I was there, I decided I needed some new clothes. Well, nothing fancy. I definitely needed new underwear. Everything I had was either now too small (dang pregnancy weight gain!) or was the post-c-section granny panties I had picked up. I know it sounds weird, but I wanted something new for the big appointment day. So I also picked up a new top and some new yoga pants. Yoga pants are my go-to right now. It's either those or pregnancy pants or size I-really-can't-be-that-size pants. I really hate my post-pregnancy body and oh how I wish I was the size I was when I got married. But at least if I was going to be going to one of the leading children's hospitals in the world and meeting with one of the BEST pediatric cardiologists in the world, I figured I'd better not be too frumpy! Plus, the new clothes took my mind off any freaky nervous feelings I was having.

So then I realized that Little Man would be in the car with us (where else would he be?) for nearly 3 hours! So I had to find something for him to do in the car. So I went a little crazy and had some fun on Pinterest looking for things we could take. The last time I had taken him on a trip was for my step-mother's memorial service back before I got pregnant with Princess. It was then, that my mom suggested a car bag of toys. So I set to work putting one together. I'd been collecting snacks for a bit but still needed to put things together for him. (I'll post about the things in his trip bag later.)

Knowing that my mom was going to try and get off work early, and would be at my house sometime around maybe four-ish, I set about packing everything. Well, after lunch, my phone rang. It was Stanford calling to say that Dr. R would not be available tomorrow and if I would be okay to see Dr. Y. If it wasn't I could reshecdule. I was okay with seeing Dr. Y mainly because we already had an appointment with the GI clinic early the next morning and we had had the appointment with the heart clinic for a month now. I knew Dr. K (our cardiologist) would probably not be happy that we didn't get to see Dr. R, but I was fairly confident that they weren't going to find anything new. The worst thing I knew that would happen would be that they would want to do a cath and we would be there overnight. But I knew that if they wanted to do that, they were going to have to convince me that it was necessary.

So after I got of the phone with Stanford, I was actually feeling okay. So I wasn't going to see Dr. R, but things were going to be okay. So around 2p, I had to give Princess her blood pressure mediation. This is not the easiest task to do with an infant. If you've ever tried to give your baby Tylenol, you kind of get where I'm coming from. The only difference is that usually even the infant Tylenol or Motrin is flavored. One of Princess's medications doesn't have a flavor. I don't think they can add flavoring either. The reason I think this is because on one of the packets of instructions I got it said to mix it with applesauce, water, or pudding to help with the taste. The packet specifically said NOT to mix it with formula or breast milk. So here I am giving my infant who isn't developmentally ready to eat solids or drink water nasty tasting medication. Well, usually she does okay, but sometimes she spits it. This ALWAYS worries me. I KNOW I'm not supposed to give her more if she spits it, but is the reason her blood pressure isn't coming down because she's not getting enough of the medication? If she doesn't spit the medication, sometimes she chokes on it. This is what happened. She spit some and then choked on the rest! I knew this wasn't going to be the easiest day at that point.

Thankfully, Little Man laid down by himself and took a nap, so I was able to finish packing the rest of my stuff and Princess's stuff without him being underfoot. So by the time I got everything together, I had the stroller, car seat, pack 'n' play, two bags for Little Man (one was his car bag and one his suitcase), two bags for Princess (one was her usual diaper bag and the other had all the extras), and one bag for me (I had put my clothes and Princess's clothes in there). I knew my mom was only going to be bringing one bag and probably her work computer. The rest of the trunk was going to be our stuff!

My mom showed up right when she said she would. I had Little Man up and while Pops packed the car, everyone did a potty stop. Then we got on the road. It only took us three hours and I managed to map the way that avoided all the tolls going there! I honestly don't think that was that difficult. I think the tolls were for those crazy people who want to get there faster. We had Taco Bell for dinner, which was a little difficult to find because in the Bay Area they don't allow signage on the freeway. I guess it would get too difficult to see anything if everyone had their massively tall signs all the way up in the air all over the place. Of course, when we went in there, Little Man said he had to go potty but came out screaming a second later. Taco Bell apparently had the hand dryers on the wall that would just turn on automatically if you put your hand underneath it. So I had to go take Little Man into the potty to make sure the "Loud Thing" didn't come on.

As we were on the way to the hotel, we saw lots of tech companies: Dell, Microsoft, etc. We were definitely in the Silicon Valley! We wound up staying in Mountain View because we couldn't find a hotel that was decent in Palo Alto. Apparently, it was the weekend before school started! I didn't get pictures of the hotel, but when we got there, we had to get one of those carts because we had SO MUCH stuff! Once we got into the room we rearranged things slightly to fit the pack 'n' play in there. I then set about making formula and rearranging the counter by the little sink and fridge. Mom remembered the paper towels that I had forgotten and brought her plastic measuring cup as I didn't have one. We showed Little Man the bathroom and he about had another fit when he saw the blow dryer on the wall. He thought it was another "Loud Thing." We unplugged it and let him press the buttons on it to make sure it wouldn't come on. I know this seems like a lot for something so simple as a hand dryer, but he's had some bad experiences with some of the Dyson jet hand dryers when he was younger. I think it was RIGHT at the point where the fears would kick in. So we have to explain a lot to him, but he's okay eventually. He even took a bath in the hotel bathtub! Though he was quite disappointed he didn't have any toys.

When MeMe and Pops stepped out for a smoke, I sanitized all the doorknobs and faucet handles. Yeah, I knew the room was clean, but a lot of times, the doorknobs and faucet handles aren't done and they are GERM MAGNETS! We then settled in to go to bed. Well, Little Man was WAY too awake and wound up staying up until 10! I was up at 3:30 feeding Princess and then finally fell back to sleep around 4. I knew the alarm would go off at 6 to start our long day at the hospital.

Day 2 of our Stanford trip still to come!

Wednesday, August 21, 2013

In All the Chaos, a Little Bit of Normal

Hubby likes to disappear at times. He doesn't mention that he's going outside or anything like that. It really annoys me. I don't know why. I mean, I'm not trying to be controlling or something like that. But it would be nice if he at least would say, "Hey I'm going next door, be back in a few." He did this yesterday when the neighbor showed up at the door. He just disappeared. It made me so mad! I mean, I've been with the kids all day by myself and would like a little help, but instead, I was the one getting Little Man in bed and because Little Man is three, I kept hearing, "Where's Daddy?" And I was truthful with him when I told him that I didn't know.

Hubby did it again tonight, except this time I kind of knew what he was doing. He was taking Little Man outside to bring the trash cans in. Then I could hear them in the back yard. I figured they were picking up after Sadie Dog. Princess was just chilling on the floor with her toys. When she dozed off, I checked out the back window. What did I find, but Little Man playing in the mud! This is AMAZING! A little bit of background for you all who don't know Little Man. I don't know what happened (maybe it was his slightly OCD father), but he has a problem with getting dirty. He especially has a problem if it's a "digger shirt." (He LOVES dump trucks, diggers, and all things construction.) Last week, when he went with MeMe back to work, she took him across the street to the gas station and there was a big backhoe filling up. Little Man was in SHOCK. He was so in shock, that when the owner asked him if he wanted to climb up inside, he squeaked, "Yes, please." (Little Man is NEVER quiet!) He got "digger dirt" all over him. Surprisingly, he didn't complain that it was on his "digger shirt." I figured it was because it was dirt from a digger and diggers get dirty. So to see him playing in the mud tonight warmed my heart! I was so glad he was doing it. Okay, I'm not so glad that I now have to mop the floors because he came in the house in his muddy shoes and made a complete loop around the whole house, but I guess I can live with it, being he was actually playing in the mud! We had to wash his feet off in the bathtub. Then I saw his shirt:

You may not be able to tell, but there is dirt on the shoulder of his shirt. His shirt happens to say "Dirty Diggers." Oh boy was this one little dirty boy! He had to wash his feet and his hands, but the most surprising thing was that he wasn't complaining that his "digger shirt" was dirty!

So then, we put away his clothes and Little Man got in his digger jammies. (Did you expect anything less?) While we were in his room, I had Hubby pull the Pack 'n' Play out. Well, we also pulled out some boxes. So yeah, Little Man was going to go to bed late. At least Hubby had the forethought to bring Princess in and put her in her bouncy seat. I went out to put the laundry basket up so I can do Princess's laundry and when I came back, I found this scene:

In all the chaos that I have going on with taking Princess to Stanford this weekend, it was nice to find something so common place happening in my own household. I often think that the craziness will never end. We are constantly on the move going from appointment to appointment. It's things like finding Hubby reading to the two kiddos that remind me to slow down and count my blessings.

I've heard that you need to make your mess your message. And boy do we have a mess sometimes. But every so often, there is a moment of peace, a moment of normalcy that reminds me just how wonderful life truly is. I know people say that God doesn't give you more than you can handle, but I sometimes don't believe that's true. I feel like sometimes He does give you more than you can handle so that you remember to trust Him.

I'm so thankful for this moment of peace. It was a good reminder tonight to slow down and not take anything for granted.

Prepping for the Trip to Stanford

Tomorrow, Princess, Little Man and myself along with MeMe and Pops (my parents) leave for Stanford. We'll be leaving tomorrow evening after MeMe gets off work. They'll be picking us up from our house as we are on the way. Princess has GI clinic in the morning and cardiac clinic in the afternoon at Lucile Packard Children's Hospital at Stanford. She earned her way there via Dr. K, the cardiologist. He was consulting with Dr. R about her cardiomyopathy back at the end of June when we were admitted to the hospital for testing. Dr. R is the leading pediatric cardiologist specializing in cardiomyopathy. He literally wrote the book on the causes of cardiomyopathy in children. Since we had the appointment there, and Princess developed the reflux and has had the milk protein allergy for the past three months, we were able to get into the GI clinic there as well, since the GI clinic here in our area didn't have an appointment until September. (We've had the referral with the local GI clinic since we were discharged mid-June.)

So what am I doing today? Laundry, so we all have clothes for the weekend. I also have to pull out the Pack 'n' Play and make sure I remember how to put it together. (It's been about 3 years since I last used it!) It probably also needs a good cleaning with some sanitizing wipes. I also had to go and get gas cards from our local agency designed to help families with special needs children. The agency does gas cards for families because our county is small and rural. The neighboring county has a vast majority of specialists and the children's hospitals with NICU and PICU services. We were offered gas cards back when Princess was in the NICU. I opted not to use all 8 of them during her 11 week stay because I figured we would be seeing specialists out of the area. So this morning, I met with our contact there at the agency and we got two gas cards, a bag of snacks (more for mom than the kids), diapers for Princess, and a binder. The binder is for keeping track of everything. I already have one and will be posting about at a future date. The other thing I am doing today is updating Princess's binder. This happens about every week or so, sometimes every other. It just depends on when we are seeing a specialist.

We'll be spending Thursday night in a hotel about 15 minutes from the hospital. Apparently, it's the weekend before all the medical students start so every place nearby is booked.Thankfully, the hotel has a refrigerator and a microwave in the room so I can keep Princess's formula taken care of.  I never realized how good I have it at my mom's house. My packing list is about the same as it is to go spend the weekend there, except we have to include the Pack 'n' Play with sheets for it, something to warm the bottles in, and a stroller all for Princess. For Little Man, we have to include snacks and a bag to keep him entertained in the car and possibly while we are at clinic appointments. We'll be leaving Friday after our last clinic appointment and then we'll be spending the remainder of the weekend at my mom's house.

Ok, off to go change the laundry, give Princess her medication, and wash bottles!

Sunday, August 18, 2013

The New Things this Weekend

The first new thing this weekend is this:

The reason for the mask is that I think I have a cold. I'm not ENTIRELY sure as of right now. There was a fire that started early in the weekend and I was already headed up to my mom's house. So I pretty much was driving right into a smoke screen. It wasn't as bad as if I was driving into the wildfire itself, but there was still some smoke in the air. So I'm not sure if it's a cold or a reaction to the smoke and fire.

So why the mask? Well, Princess was born premature and her immune system is still immature, so we are a little on the germ-o-phobic side here right now. I CANNOT have her get sick right now. If she were to get sick, she might need to be hospitalized again. It also means that I'm living in sanitizer again.

If I am sick, it probably is because I finally started relaxing on my sanitizing protocols. I shouldn't have done that. I should have kept up the hand washing, sanitizing, and sanitizing wipes on everything. I guess I'll be going back to that again.

The other new thing:

This is a big deal. When we moved in, the fence was practically falling down. It was old and covered in ivy. There were missing planks and boards that were missing pieces. Normally this wouldn't have been a big deal, except for Sadie Dog. She's an escape artist. Oh, and the neighbors had pit bulls. Nothing against pit bulls or their owners, but I do know that they are very loyal dogs. I have (now) two small children. At the time we moved in, I only had Little Man. He couldn't really play in the back yard because the dogs next door would bark and try to get through the fence. Sadie Dog would also go over and visit the dogs next door at times.

I have been gently nagging Hubby about the fence for the past three years. His dad owns the house we live in and is allowing us to live here rent free. He did a whole lot of work to get the house ready for us to move into three years ago. Well, now that Princess is here, I certainly didn't want to take Sadie Dog outside and have Little Man running around and Princess on my hip and have one of those dogs to get into our yard. So I told Hubby that there needed to be something in place when Princess came home from the hospital. That's the chain link you see in front of the new fence. It's a temporary fence to help keep Sadie Dog in the yard.

Well, as it turns out, the last time Princess was in the hospital, the neighbors moved out. I had figured they had either sold their house or taken it off the market, because the sign had disappeared from their yard. I didn't know that they had moved though. I knew they were having yard sales and were planning on moving. It was just surprising when the new owner came over to ask about the ivy on the fence.

Now this new fence isn't perfect. I'm not sure what's going on with it, but there is one whole panel that is lower than the rest and there are a couple of large gaps between the fence and the ground. Sadie Dog could easily squeeze her way through there. So the temporary fence isn't ready to come down just yet. But hopefully soon.

Wednesday, August 14, 2013

Preschool Assessment and the Start of the School Year

I began homeschooling Little Man back in June. I started almost immediately after I pulled him out of his daycare. Things were fine while Princess was still in the hospital. Once she came home, things got a little crazy. With all her appointments and a couple of hospitalizations, schooling became an infrequent event. I began to feel really bad about it. So I prayed about it. I started looking at other homeschooling blogs. Even the preschool ones start their "school year" around this time. I looked at our schedule. Princess has a trip to Stanford coming up in a week. It's going to throw our schooling off again. So after much thought and prayer, I decided to start our school year tomorrow. I have lots of new things I want to do with Little Man and I have been trying to figure out when to introduce them. Well starting our school year with a specific date will be great!

Now, why tomorrow? Well, the school district we are in starts school tomorrow. So I figured that would be a good way to start. And on top of that, with Princess's trip to Stanford next week, we'll cover one letter over the next 5 school days and then have the long 4 day weekend and be able to start the next letter the following Monday.

The first thing I wanted to introduce comes from 1+1+1=1. This is the link to their first calendar. One of the things they did was Make the Date with Coins! Little Man LOVES change, so I thought this would be a good thing for him. I started by seeing if he could sort change by value. He could, so I knew we could expand on this.

Then I saw this post by Milk N' Honey Learn and Grow. She was doing a Daily Learning Notebook with her kiddo. There are a ton of links on there of the things she's putting in her notebook. I found a few that I decided to try with Little Man.

The first was the basic Notebook. It's found at Confessions of a Homeschooler. It's the updated 2013-2014 Notebook. I'm only using some things from it. We're going to use the daily pages and the calendar pages. After I assessed Little Man, I decided to add in the name writing pages and the coloring to 100 page.

The other thing I found was a preschool assessment from Me and Marie. I LOVED this. I had to find a few things like a cutting assessment (from Kids Learning Station) and numbers (from Worksheet Fun). I copied off a sequencing events sheet from one of our books we had. In giving Little Man the assessment, I learned a few things for next time.

1. I'm not happy with the numbers worksheet I found. It had the numbers 1-15 in order. I'm going to try and find one where the numbers are out of order (or make one) to actually see if Little Man recognizes the numbers. (I'm pretty sure he does.)

2. I'm going to print a sequencing sheet of something he isn't familiar with. I copied the first one out of our book, which dealt with planting a seed. He's done this a lot both physically and in other sequencing sheets.

So what things do we need to work on?

  1. Writing/Letter/Number Formation -- This has always been my focus with him. He's just starting to get the fine motor skills down to be able to do this better. So I suspect this will come soon, I hope.
  2. Months of the Year -- Though I know he learned them at his last preschool, we need to continue on them. I guess I need to find a poster of them to post in our calendar area.
  3. Rhyming -- We have just started on this, so I'm sure the more we work on this the better he will become.
I think for me, the scariest thing is all the things he already knows. I'm going to have to start introducing kindergarten ideas here soon. I know for me, I also need to get some preschool science and math ideas going as well. Looks like I have a long night ahead of me tonight to prepare for tomorrow!

Welcome to our Family Blog

I have seen a lot of family blogs out there. They are usually run by moms (occasionally a dad will have one). I think most moms feel that in this new age of technology, the blog is a great way to keep family members (and others) up to date on what is going on, as opposed to the traditional page long Christmas letter. I think for other families, blogs are ways of documenting their health struggles. And still for others, it's a way to share ideas about homeschooling. For me, I look at it that we are doing so many things, that it just makes sense.

So first, meet the family:

Me: I am a stay-at-home mom of two children.

Hubby: He works 2 jobs in retail to support us.

Little Man: He's 3.5 and loves anything to do with construction vehicles.

Princess: She's our little miracle child. She's 4.5 months old now and doing well.

Sadie: She's our 10 year old yellow lab.

More about us is listed on the sidebar. So here are some of the things to know about our blog:

1. Faith Based. -- First of all, this blog is faith based. I have prayed a lot about this, and feel that this is something I need to do, not only for my own sanity, but also to share the love of Jesus. Everything that has gone on with our family within the past 3 years has all been because it has been part of God's plan. Our move home, my job, Princess's birth, everything. It's His doing and all I hope to do is follow His Will.

2. Homeschooling. -- I never thought I would be homeschooling my children. I always envisioned myself teaching a room full of kids. But that was obviously not what God had in store for me. Right now, I am homeschooling my preschooler. We call it "playschool." The reason is because up until June, he was in a preschool setting. Well, it was a licensed home daycare and she ran her daycare like a preschool. When she was looking at actually upgrading her name for it she decided on "Playschool." It was a wonderful thing for Little Man at the time. He was really into "Caillou" and Caillou went to "playschool." So we've kept that for now. As of right now, I'm NOT writing ANY of my own curriculum. I don't really have time. (More on that in a second.) I am getting curriculum and ideas from various homeschooling blogs and Pinterest. If I do post a homeschooling blog, I will link to the blog where I got the curriculum/idea from. I most certainly want to give credit where credit is due.

3. Health Issues. -- Princess was born premature. That was the reason why Little Man had to come out of daycare and I became a stay at home mom. Because of her prematurity, she has several issues. (We are praying they are all related to her prematurity and not some rare disorder.) So we see lots of specialists and go on lots of appointments. Because of where we live, most of the specialists are at least an hour away so that usually means a day trip to the city. So expect some posts about her health issues and the problems that we face dealing with so many specialists.

4. Cleaning/Organizing.  -- I suffer from depression. Because of this mental illness, lots of times my house gets into the CHAOS mode. (CHAOS stands for "Can't Have Anyone Over Syndrome. As found on the FlyLady Website.) So, as a result, I am using the FlyLady method to get over my CHAOS. I own NOTHING of this method. I won't go into details about it here, but as things get accomplished, I may post pictures or updates about things.

5. Family Stuff. -- Things relating to our family, obviously will be posted here. Things we do, things we try, things that may inspire others will be posted. Some of my ideas will undoubtedly come from other families, so I will link to their blogs as needed.

I'm hoping to get into this blogging thing going. I don't have a ton of time, but with the Lord's help, I think I can do this on top of everything else!
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