Wednesday, January 30, 2013

Dear G

I wanted to let you know some super things you've done lately.

You've started saying "bray!!" At meal times or at bed time...it's how you say pray and I'm so proud of you for knowing we need to do so. You used to put your hands together, but now you say the word too.

You sat on my lap for like 15 minutes last night and wanted me to tell you a story, so I made a totally random one up and you liked it. The sweetest part was when you wrapped your arms around my neck.

You point out momma's letter and like trying to use it in words it doesn't belong (when practicing "spelling"). I feel this means you like to include me :)

You give me and j tons of kisses and like to take care of him. This includes demanding he eat when you think it's time; "eat eat eat!"

Yesterday you colored on something you weren't supposed to (first time ever), and you got in trouble but helped clean it. I think you got the message.

You say many letters correctly when asked to identify them. You also do colors (old news) and shapes! You can't say most shapes yet (you'll try, but they don't come out right), but you can identify them--you even get trapezoid right in your puzzle!

You started putting your slippers on by yourself...often on the wrong feet though.

You're getting so big, I can't believe you'll be two in less than a month.


Thursday, January 24, 2013

J's genetic appointment

Today was a big day. Since J's brief stint in the NICU, January 24 has been THE day in my mind. Our first appointment with specialists. Between December 22 and January 24, J's only goal was to grow. My goal was to get better. We accomplished those things, though he did better than me. I'm still not 100%, but I'm getting there...more often 2 steps forward, one step back, but isn't that how these things usually go, especially for hardheaded women like myself.

So back to J.

To be brief, J has been clinically diagnosed with chondradysplasia punctata. That means that he has a genetic abnormality affecting the way some of his cartilage and bones grow.

This is a very varied disorder. Some people can be affected genetically, but show no symptoms. But then, some types of the disorder are very fatal (usually within the first three years of life).

They think he has type one of CP, but are ordering a more specific gene test to know more. It's x linked, which means that I am most likely a carrier. It's a small possibility that J's genes mutated on their own... But not likely.

I'll write another post soon about the implications that whole "x linked" thing has for my family....

J is thought to have a fairly mild case either way. So that's "lucky." It is mostly more "waiting and seeing"...

He could be of short stature, he could have mental disabilities, he could have hearing loss, he could need surgery....or he could not.

The main thing is to treat his symptoms, and the main symptom is his small nose...which regardless of type of CP, has the same plan; avoid getting sick at all costs (most recently in the form of a $2400 shot and living the life of a hermit)....
As I have said over and over again...he cannot afford to get sick. Not only would it certainly spell h-o-s-p-i-t-a-l, it could be fatal if we didn't get his nasal passages opened quick enough. Upper respiratory infections are hard on all kids, but kids with congenital abnormalities there are even more at risk for complications.

So aside from J's nose sitch, his other symptoms are little calcifications on some of his bones that aren't hurting much that we know of. He's got a teeny murmur that is "trivial" and he's cute as heck.

That's all we know for now. Praise God.

Next week we go to a special craniofacial clinic, where we'll see several specialists. We'll learn more about our plan for J's health outlook, development, and hopefully goals to obtain. We'll see his nose surgeon, an ENT, speech therapist, social worker, and one other I forgot.

We also have his NICU follow up next week, which I think is just a weight check plus general, "how's he doing at home" kind of a thing.

Speaking of weight, he is growing like a champ!

He was 10 pounds 15 ounces today, which they said is 60-something percentile. He's just a bit over 21.5", which is less than 50%...but I forget the exact number. His head is 91 percentile. Boom, he's a genius ;-)

He continues to nurse well, his sleep is hopefully improving, and is truly waking up to the world. I had some precious snuggle time this morning full of coo's and happy faces. He's a doll (as long as he's not fussy from gas or reflux).

Aside, G did great with the babysitter, who seemed super sweet and a good fit--she even put the dishes in the dish washer :) (and abided all our germ-freak rules)

Explanation of the genetics, as explained by our genetic counselor today;

Our DNA is a recipe book. J's recipe book blood test looked just fine, all recipes were in order (genetic lab came back normal, all 23 pairs there).
Our chromosomes are like the recipes. None of J's recipes were missing any sentences (micro chromosome array came back normal, nothing missing on the 46 pieces).
Finding the genetic abnormality for J is like looking for a misspelt word in the "X" recipe (specific ARSE gene test on the X chromosome).

That's an analogy after my own bakers heart :)

Thanks for the prayers and thoughts. There're kids with a lot worse problems than J, we just have to be very cautious right now during cold and flu season because his tiny nose and nasal passages are a big deal for breathing. We are lucky to have such a minor worry in the big scheme of things. God is good.

Monday, January 21, 2013

A little insight into my mind

So it's been a doozie of a day around here. I blame it on the inauguration interrupting Daniel Tiger. Our day just cannot go on with out that cute preschooler. Rather than go on about the laundry list (what does that even mean) of things that went wrong; I'm writing a short little blog about me.

So I was talking with my mom; and one of the things I said was how guilty I feel for bringing down our (my husband's and mine) family. I am a money suck; more of our student loans are mine than his...and I'm not even working to pay them off. He is. I have a lot of medical bills rolling in. I bring us down emotionally too because I'm a ball of stress these days...with taking care of the kids and my health issues and hormonal battles. I mean, in general, I'm not too bad... It's not PPD or anything; but I'm certainly a mess in my head; and it's a a daily battle of keeping up appearances.

My mom was saying that her guilt for money and all that is what led her to finally go back to work when I was around 2. She needed out of the house. Well, G is about two, and here I sit.

I love staying home, and I don't want anyone else raising my kids... But I hate the guilt I feel for being a financial drain.
Paying for daycare on a teacher's salary is pretty stupid, in my opinion, and I'm not even licensed in the state we live in anyways.

So what's a girl to do.

I want to homeschool our kids (through 2nd grade or so) anyway, so part of me is like, "why bother" with getting certified right now, since it'd be even more of a money suck. (in Kansas it'd mean an extra test and then continuing education, ie Masters)

So I figured the best way to form a plan is to list my goals and feel better knowing I'm contributing to our family in a meaningful way for now and the money will come later...plus I'm saving us money by not putting the kids in daycare. If only my mom could move here and retire and watch my kids for free ;)

Kaylene's goals:

1-2 years,
Continue staying home with kids, teach them everyday things and keep them young. Socialize with like minded parents and kids.
Maintain house, budget, prepare meals, clean, etc.
Prepare for homeschooling, research materials and accreditation with state
Find local homeschool coop to get involved with
**Perhaps taking in a few kids for tutoring in our home, 3-8 grade age, especially in math** need to look into this for the coming school year or summer

3-4 years,
Begin formalized homeschooling, and all that entails
Continue maintaining house/home
Begin my own masters courses, for now I think I'd like a M Ed in special Ed-gifted...especially because its online through Mizzou. Holla.

5-10 years,
Complete homeschooling of kids and my own masters degree.
Search out a gifted teacher or middle school math teacher position in our area
Integrate kids into public or Catholic (preferred) school as I return to work
Loans paid off.

There. I have a plan.

Oh, and on a side note, I'm glad I went to college, and I needed the loans to do so... So I don't regret that. I am much more educated, worldly and experienced because I went to college. I met my husband because of college. I grew into my own because of college. Now if only I could pay off the loans for myself...

Thanks for reading

Wednesday, January 16, 2013

My sweet boy is one month old!

Today, mister JT (we don't call him by his initials, it's just privacy) is once month old. Which, consequently means I am one month post-op. Ugh. What a month it has been for this momma, I can't wait to be several months post-op and hopefully back to my pre-pregnancy self, working out, toned up, and agile as ever. But, I'm not wishing away this time with baby boy...although some sleep would be nice...and some fun times with sibling play would be nice. I know, I know... I'm gonna 'miss this.' Or I 'should.' But honestly, when I look back at G's 1 month and etc... I don't miss it. Yes, I'm glad we went through it all, and that we have those memories, but her age now is much more fun and is better suited to the kind of life I want to have...which is exploratory, learning, fun, experimenting, etc etc.... I love her age now. Maybe when she is 26 and recovering from surgery, and in horrible pain, and calling me on the verge of tears...sure, then I'll wish she was little. But the difference between JT being one month old and 23 months old, miniscule, and I can't wait for him to be a bit older. Call me crazy.
school time :-)

As a one month old, JT,

loves to eat. J eats probably 20 times a day. Ha. He eats about ever 1.5 (ish) hours during the day, and about 2-2.5 (ish) hours at night. Sometimes we get lucky and he'll go a 3 hour stint. We don't want, and logically can't, put him on a schedule. Due to his harder time breathing, he needs more calories than a regular ol' baby, and it'd be detrimental to his health if we restricted his feedings. I hope he will grow out of the high frequency of feedings eventually. He's always been great at breast feeding, and for that I'm very thankful.

wants to sleep, but sometimes has trouble due to gassy-ness or annoying breathing troubles with a clogged up nose. He can fall asleep without eating, so this is a major victory that I don't want to back track on. We all know the troubles we had with G and her association of nursing to sleep. If we can avoid that one with this kid, kudos to us/me. He usually sleeps in his Rock and Play, rarely in his crib, since being elevated helps him breath easier. He can sleep laying flat, though, so we have been trying to transition him to his crib a few times a day/night, because he will eventually out grow the RnP.

is super cute. I mean, come on. Even with his abnormally small nose, he's a handsome little man. I could eat him up with a spoon.

weighs over 10.5 pounds and must be 21 inches or so. I'll give you the official stats after his appointment on Friday.

likes music and singing. G helps me sing Row, Row, Row Your Boat to him, and I like to sing You are my Sunshine to him.

If his tummy isn't bugging him, and he's happy; he likes to look at his stuffed animals and picture book. Generally, though, if he's awake, he's sadly grumpy. We really treasure the times when he is awake and pleasant (unless it's the middle of the night, then we are grumpy!).

Though his sister rolled over at a month old, JT shows no real signs of being quite the go-getter that G was/is...though I believe his 'fighter' status is earned through the fact that he is quite miraculous with his breathing and weight gain that babies with his proposed condition struggle with. 

And to thank me for being an awesome mom, he and G took naps at the same time today so that I could write you this short little developmental blog.

Here was a picture of me and him (yes that is grammatically correct) at 2 weeks old when we went to jcp;

Cloth Diapers Update {23 months in}

I started my blog, originally, to blog mostly about cloth diapers, then I changed to be about all things G, then it become just all things parenting / my life.

I can't believe, however, that's it's been SO long since I posted about cloth diapers. I figured I should do an update, seeing as how I've got nearly two straight years of experience (From newborn to toddler) using a variety of of cloth diapers in a variety of situations.

Monday, January 14, 2013

G at {nearly} 23 months

At 23 months of age, G is still a super sweet little girl--just with some firey 'terrible two' outbursts that are CRAZY, complete with screaming, flailing, stomping, and non-logical reasoning. Aside from those bursts, she is the best little girl you'll ever met. She's a great big help with J, as I knew she would be, and she has picked up on some vital things... Like he gets fed milk from me (but she doesn't remember nursing, since she weaned 6 months before he was born, so she doesn't even think she should nurse too, whew), and he needs consoled when he is crying. She knows he takes naps and has a bed time, and she knows he has his own toys, clothes, blankets, etc. I love that she calls him by his name and by 'bebe.' I'm glad she can realize two things can be called by different names. She'll bring me burp rags, pillows, blankets, and stand guard if he's crying. She'll tickle his feet when he needs cheering up, and she hands me diapers or wipes and declares which ever type of diaper it is (peeee-peeeee or poooooe-pooooe!). She does get frustrated if he is not where she thinks he "should" be--like in his bed, or in the swing (that he has yet to like), or on his play mat. G has a very serious sense of right and wrong, black and white, and there's really not much room for grey at this point...so you can imagine patience is lacking for her (and her mother). It's generally cute, though, because she knows how things need to be (baby is tired, baby should lay down, baby should sleep...though we all know that doesn't always happen when and how it should!)
First time holding baby brother, Jan 2013
  • She is talking fairly well, compared to a few months ago. She has tons of words, including colors! She doesn't really do phrases, and most of her words are hard for a stranger to understand. I can usually tell exactly what she is talking about, but I do spend 24/7 (quite literally) with her. 
  • She loves to pretend, and I'm pretty sure her imagination is very advanced for her age. I catch her making pretend sounds when she is cooking, playing with cars or other machines, and she covers up babies, cooks in her kitchen, and the like. 
  • She's got incredible fine and gross motor skills. She's jumping and running, and pushing and pulling. She's a regular preschool-wanna-be. My favorite thing is that she likes to push J's rock and play (his bucket seat, as we call it around here) from the kitchen to the living room when we are going from eating to playing, and vise versa. She has to maneuver it around a corner or two and she barely nicks the walls. I'm fairly impressed. 
  • She's been coloring like a champ for months now, but she's improving movements and strokes. 
  • We play school on a routine basis--our main task now is counting 1-2-3 items/dots/marks/etc. I wish I could tell you I have a genius mathematician on my hands, but I'd say she's barely above average on mastery of this skill. I don't push it, we just have fun with it. Just today she asked to play 'count the {play food} eggs.' (more so motioned it than said it...seeing as how that's a phrase, and if you missed it above, she's not so much into phrases). 
  • G's chores: setting the table, helping dust, helping with the dishwasher and laundry, picking up her things, putting her clothes in the hamper, and she'd love if I let her sweep or swiffer more...but all she does is push things around and make more work for me, so I rarely let her help with that. She helps collect the trash (moreso replacing the bags) with my husband.

looking so big!
Here are a few little anecdotes that give you a glimpse into her personality;
  • The other night at dinner I handed her the salad dressings and told her to put them on the table. We go to sit down and my Italian dressing is next to my place, and my husband's honey mustard is next to his place. Intuitive, eh?
  • Now that we are settling into our new stay at home every day / there's a new baby routine, Daniel Tiger at 10 am is pretty much an every day occurrence. Sometimes even half of Sid the Science Kid. G has always picked up on routines fairly easy, and grows super accustomed to them (so much so that she throws a fit if something is 'off'). The second morning we started this Daniel Tiger gig, she asked about him at breakfast and I pointed to the clock. I said, "first we'll eat breakfast, then play with toys, and then at 10 o'clock we'll watch Daniel Tiger." Ever since then, she points to the clock and says Rawrrrrr! I think it's quite amusing that she's come to associate the clock with the time when we will watch Daniel Tiger. I've tried to expand on this, and will continue to do so. Associating the clock with the time that we do certain things...first step in telling time.
  • G loves to help at J's bath time, and sits guard next to his tub. She gives her baby a bath, including attempting to squirt out the bubbles from the bottle. It's darling, really.
  • She knows many letters, but really only by who they belong to. M for momma, D for daddy, G, J, etc etc... She loves finding someone's letter and presenting it, very proud of herself.
  • G likes to put on chapstick, but rubs it in with her hands... I'm sure she's not the first little girl to do this, but it's hilarious to watch.

If there's one thing she hasn't got going for her, it's that dang potty. I think I started too early, and it's lost it's appeal. She definitely knows when she is wet or dirty, and I swear she can hold it on command....and she'll sit on the potty, but won't ever go. I have stopped even asking or trying. I'll wait til the summer to push the issue, but I'm dreadfully hopeful that she'll do it on her own sooner. Like now, since we are 'homebound' anyways.

G's schedule is fairly loose, but it is basically bed time around 9 pm, awake around 8:15 am, 2ish hour nap around 2 pm. Generally, she goes down well. Sometimes she whines until one of us goes back in there, but I think that's mostly an attention / new baby thing that will hopefully wear off soon. It's way better than screaming like a banshee. She eats three meals a day and two snacks usually.

Her favorites as a 23 month old;
  • Food--berries, chocolate, teddy grahams, ketchup (on ANYTHING), pears, juice boxes, cheese, and her main meat is ham or chicken nuggets. (new foods tried this month include eggplant Parmesan and quinoa; I've gotten much better about offering and making her try our meal)
  • Toys--Caillou anything, magnets, play kitchen, colors
  • Activity--anything outside the house, watching Daniel Tiger, doing projects, moving J's seat to where it 'needs' to be, talking on the phone (though she rarely says anything)
  • Clothes--she's very fond of the yellow jacket my sister got her (seen in the top photo) & always accessorizing with a clippy (thankfully, because I still refuse to cut her hair. Those bangs will grow out one day)
G;s first snow man, Jan 2013

Next month?? My sweet girl turns two!! I've got a awesome Caillou party planned, but it's a very small and low key affair since she can't be around other kids during flu season due to J's extreme need to avoid any illness.

Thursday, January 10, 2013

One day at a time

Sorry it's been a while.

It's not even a "busy mom of two" excuse...it's a, there's so much to say, I don't know where to begin excuse.

So I'll just start with today.

Today is the first full day that I've been solo with the kids. The first three days of this week, my husband took half days to "ease" us all back into a routine after 3 weeks off, and two weeks at home helping (since we spent the first week in the hospital).

Staying home with two kids isn't so bad, until they both need you at the same time; or they are both crying at once, or one spits up all over you and pees everywhere and the older one drops your water cup while trying to be "helpful."

Thankfully those are only a handful of times a day. When J is asleep, it's pretty much like it was with me and G before he was born. Except I'm way more exhausted and can't move as agilely because I'm not fully healed.

The crappy part is that we are generally home bound for at least the rest of flu season. J can't afford to get sick, to keep us out of the hospital; and so G can't be around other kids or germy places either because germs spread quick among kids and often kids don't show symptoms of the illness until its too late to keep them away from others.
Long story short, no play dates, no target runs, no panera smoothie trips...no church as of yet either. It all kinda sucks, but to put it in perspective, I couldn't live with myself if J got sick and we spent a miserable week in the hospital due to me being selfish. (J getting sick means his already reduced air ways would fill with mucus and severely, if not fatally, lower his oxygen levels more than a typical kid, and therefore be a BFD)

We used to go-go-go, so G gets bored and whiney much more than before. Call it toddler stir crazy. I can generally cope because I know it's best, she just can't understand the reason we are boring now.

So we take one day at a time and rejoice that J is alive and home and relatively healthy. And that our PBS has an awesome 10 o clock hour.

His genetic appointment and hopefully the one where we get a definitive diagnosis (versus the proposed one), is on 1/24. Trying to be patient and not anxious.
I agree with the doctor's proposed diagnosis because everything I've read matches J...we'll discuss that more when it's verified. Suffice to say it's likely a super rare x linked genetic defect that has a huge range of severity and outlook. More wait and see...