this is emy’s firsr post, sh’es eating my hands while i type.

WQe saw trhe vision person (this isn’t working, putting teething monster down to scoot.)

We met with the children’s caseworker from the Blind Children’s Vocational & Discovery Development Program. Now I know what they do and how they work with his vision teacher, two different programs. Anyway, he qualifies for this newest program only because he’s getting vision services. He’s getting vision services because of his eye exam, which says he has ROP and a strong prescription. The fact that his vision is corrected to the higher end of “normal” is apparently irrelevant. Which is fine by me! He’s not blind, the caseworker said his vision is so great there is no way he’ll be considered disabled by the government - HOORAY!!

The caseworker did ask why Bennett is receiving services since his acuity is great and I honestly have no idea, but I’m not going to complain. She’s adding to our mix:
1. school advocacy, she’ll attend his ARD meeting once he turns 3 and moves to the school for services.
2. diagnosis information
3. social support - they host activities for blind & low vision kids in the metroplex
4. vocational and occupational training (once he’s 3)
5. equipment purchases for anything his vision program doesn’t pay for, but only for leisure stuff - nothing educational, his vision services are suppose to cover that.

She thought a specialized table thing for him would be good, it slants so he can get a better view of coloring, books, etc. She has to get an official refusal to purchase through his other agency and then she buys it but it’s this weird mix up because ECI won’t buy it, but I suspect his vision program would but this caseworker says she’s not going to ask the vision people because ECI is “suppose” to buy it so she’ll ask them, they’ll refuse, then she’ll buy it. HUH?? Without even asking the vision teacher? I don’t get it.

She warned us that Bennett will probably be cut off by the school district once he turns 6 (mandatory age for enrollment in Texas) and they will no longer provide vision services or purchase equipment. Not a big deal, unless he is needing braille. She said if he’s a braille reader we need to seriously reconsider homeschooling because we won’t be able to afford the equipment the school could buy, or pay for the therapy.

That’s a whole other discussion. Needless to say I did some serious research last night and read through some of the Texas Education Agency legal code last night (it’s HUGE! and mostly really BORING!!) and I believe we found our loophole so that we can homeschool and still get state and federal funding to pay equipment and vision services. Hooray! I’m going to bring it up to the special education director later this week, we’ve been working with her about Moira so she knows Bennett is heading their direction.

I should say, our school district has been AMAZING and gone out of their way to ensure Moira gets all sorts of help above and beyond anything we expected. We didn’t have to fight to get any services, we’ve been declining services. So we’re optimistic that later this year when Bennett moves to them that they will be just as helpful. I just want to make sure they don’t try to drop Bennett (or Mo, if she still needs services) when they turn 6 years old and are homeschooling instead of enrolling. I know in part it’s a funding issue but that’s where my loophole comes in - I think we found a way for them to get funding, us to get services/equipment, and for the kids to not have to attend the school to get the help.

And if the school hesitates at all, then I’ll bring up the loophole and if they hesitate on that, we learned there are parent advocates to help smooth the process and the caseworker will come. And his ECI people. I told his OT today, if we bring enough people in they may just start giving us what we want because it’s easier than fighting us. But again, we’re happy with our school district. They’re great.

He’s two. I have nothing profound to say. Just overwhelming gratitude and happiness and awe at what our family has experienced and how we’ve all grown. I’m thankful - for my husband, our children, our chance to welcome these little ones into our home, thankful for the miracles we’ve witnessed and how they’ve changed our lives forever.

From January 2005

To January 2006

To January 2007

Let me tell you about our morning. Boys are a lot better, they’ve been healthy almost 24 hours. Moira was still sick this morning but on the mend. Everyone’s a little shaky and cranky but mostly okay.

Emy got up earlier than usual so she needed to nurse and go back to bed. I’m on the couch feeding her when I hear the chair scraping in the dining room. Christopher is a huge help and runs to tell me what Bennett’s getting into and yells “UH-OH!” so I get up (still nursing Emy) and go see this:

That would be two grapefruits Bennett stuck in the toaster oven - I had Christopher grab the camera so I could snap this (Emy still obliviously nursing away) and then I realize the toaster oven is ON! Grab Bennett, unplug the oven, go lay Emy down hoping she’s full enough. In the meantime Ben has thrown his glasses across the room in anger, banged his head on the tile, raced into the other room to smack my laptop for good measure, wailing the whole time. I come back from laying Emy down to find he’s retrieved his glasses from under the table and put them back on (properly, he’s getting good at that!) and pushed the chair back and grapefruit are once again in the toaster oven. Pull him down, he tosses those glasses again, bangs his head on the dishwasher, screaming at me and flailing about.

I pinned him down and got some motrin & juice in him, he’s calmed down.

I give him 72 hours before he figures out the toaster oven just needs to be plugged back in.

I am very proud of myself for taking a step back, after ensuring everyone is safe, and calming down by typing this rather than throwing them all in the yard for the rest of the day. And I just heard the chair again, so I’m off…

HOW DO I KEEP THIS CHILD SAFE??

When I’m stressed, I bake and I blog. Which is why I’m blogging multiple times a day and eating way too much sugar. Currently I’m making baklava, poor Kit. He’s requested that I give away half of whatever goodies I make, for his sake. Does that make you want to be our neighbors? I am a good cook…

The children’s caseworker for the Department of Rehabilitative & Development Services just called. She needs to come to our home to write up a service plan for Bennett for vision. This is in addition to his vision services (through ITIP, which uses the Denton County Special Ed Co-op for vision therapies.) Anyway, I’m not quite sure what else this agency can add to our mix, but we’re happy to find out.

Mostly happy, part of me is sad again. I must have asked her three times if he qualified for services. Did she get his medical review? The reports? Does he qualify? For sure? Is his vision that bad? She must have thought I was an idiot, I just kept asking in different ways. She assured me that she had the report and yes, Bennett qualifies. I said I didn’t know if that should make me happy or sad and she very sympathetically said she understood, and it’s hard.

I am THRILLED that this agency is here to help Bennett. So grateful. But really sad that he needs it. And feeling unsure if he “needs” it considering how he’s acting? I sometimes feel like a fraud, like the mother that keeps getting her kid signed up for programs for freebies when the child doesn’t qualify and doesn’t really need them. I look at Bennett and I’m finally feeling mostly confident that he’s going to be okay, even w/out the therapy that he’s going to pull through this like a champ because if nothing else, he’s got an adoring family and great medical team and a freaky obsessive researching mother. NOT that I want to let his therapists go, we want their expertise. But with their reassurance, I’m relatively confident that Bennett is going to catch up in all ways (except the vision - no “catching up” there) and what he mostly needs now from us is support & challenges. The therapy is for our peace of mind, not because Bennett needs someone to teach him how to speak or run. He’s got big siblings for that!

Hearing he qualifies for another program is hard because it means some agency, some government organization, believes he’s different from other toddlers and needs their help. Do I take advantage of that? Ignore it? How do I help him not feel different in a bad way while acknowledging that different is a GOOD thing in so many ways? How do I help him create a “healthy concept of self” while integrating all these little issues?

I guess it comes back to the label of “disabled” - that’s hard for a parent to hear and leaves me floundering a bit. There’s a wide spectrum of disabled and I don’t know what to do with this label and reality and this perception of reality and I don’t know how much is real and how much is just that - labels, and perhaps meaningless.

So I bake. And blog.

The kids all caught a cold last week so of course we (the parents) caught it and we were finally better by Monday. Then yesterday (Weds) Bennett got sick. Christopher fell asleep at 6pm. Bad sign. He woke up vomiting, then this morning Moira joined the team. It’s not been pretty around here.

So here is cute, sad, sick Bennett:

And cute, but thankfully NOT sick Emy:

And the two together. Bennett mostly ignored Emy at first but now he loves his “Bay-boo” (though he can say baby perfectly well, she is “Bay-boo”) and a couple days ago we caught him trying to pick her up. We told him if he wanted to hold her he needed to go sit on the couch so he ran over, sat down and held his arms out. It was adorable and we snapped quickly, knowing he would tire and try to hand her back. He hugged her, then promptly let go. We caught her:

There are new pictures up in the gallery, I couldn’t wait until Sunday.
January III

So, Kit & I are having a discussion. Join us -

Forget me not dolls

I’m considering ordering one. It’s a custom made doll for your child’s measurements at birth. Full term or preemies, but she does any size. I’m looked at four or so companies that do these, this one is my favorite so far.

I think it would be cool to have a doll in Bennett’s size. We have people ask all the time how small he was and it’s impossible to visualize. This gives a very accurate example (though it comes in flesh tone fabric, she doesn’t offer the “burnt red w/translucent skin option.) But really I wouldn’t be buying it for others so much as Bennett & me. I want HIM to see how small he was.

Kit says the dolls are disturbing to him because they are realistic. (We would do ours w/out the face, I like it better w/just the body size to focus on.) But for Kit he says it’s a VERY real reminder of Bennett’s early days so he would not personally choose to order one, but supports me getting one.

They are expensive, which is my only hesitation.

What do you think, creepy or cool? Will the kids & Bennett like having it? It wouldn’t be for play. Kit asked what I would do w/it and I’m not sure… but for some reason I like the idea of having one and I’ve been considering it for months.

Christopher said family prayer tonight. After requesting that we not catch a virus and get sick or be killed by bad guys, he closes and turns to me to say, “That was a nice, reverent, slow, thinking about what I say, reverent, smooth prayer like you guys say.” We often ask him to slow down and think about what he wants to say, and his little moment of self reflection cracked me up.

I’m blogging about dumb stuff to avoid talking about the stuff that’s on our minds and actually significant in some way. This is our “week” which I hadn’t remembered fully until a thoughtful friend pointed it out. Two years ago yesterday my water broke and though we didn’t fully realize it, the clock was ticking down for Bennett’s arrival. We had Mr. Cranky Doc tell us my water was broken and he wasn’t going to do anything heroic because there was probably something wrong with Bennett. Yes, as someone asked, I have been tempted to send Mr. Cranky Butt a letter w/Bennett’s photo and tell him to work on his people skills. Maybe someday I will. He was NOT my doctor, just the on-call OB at the closest ER, and the nicer OB in the morning (2 years ago today) packed me up and sent me home with instructions to call MY nice doctors and get my rear to Baylor.

Oh, and why did they send me home if my water was broken? Because their hospital is inept. Okay, but really because Bennett wasn’t “viable” yet. I talked with my doctor a lot that week and he knew I was dreading hospitalization so he didn’t want to force me to come in (this was Monday) but then Weds things were getting uglier. My amniotic fluid was low but the IV fluids seemed to get it back up and I had no signs of infection so I was told to try to stay pregnant until Friday. Then come Weds things got uglier and the doctor said Bennett isn’t viable yet, but you’re losing too much blood and an abruption at this point is dangerous so you need to come in - he gave me one hour to pack. He decided to give me the steroid shots early so that the very first day Ben crossed that line, he would have a chance. Steroid shot Weds and Thursday night, Friday they said at midnight (23 weeks), Bennett may now be born. Infection hit very swiftly Saturday morning, Bennett was out Saturday afternoon. Maybe he was just trying to be cooperative?

I forgot until today that I had lost so much blood from the crazy hemorrhaging that my two doctors (I guess if you’re a scary enough case you get not one but TWO specialists to watch your ultrasounds) - that was a tangent, what was I saying? Oh, blood loss - they feared I had lost the ability to clot (bad in case of emergency c-section, right?) and gave me a deadline to decide if I would consent to a transfusion. It became a moot point since I went into labor.

I remember crying every time I thought about leaving Christopher & Moira. Knowing they were in very capable hands (Kit & my sister, Jenny, were caring for them) was a consolation but man… moving to Baylor stunk. I cried the whole way there and had no idea what a blessing it was that I was going to be there. I was just whiny and sad and bummed and feeling like a really bad mom for abandoning my two little ones. Even though it was for the sake of my other little one. Just can’t win w/this parenting guilt, always letting someone down.

My doctors really had to talk me into moving into Baylor but remember - I was in severe denial about going into labor. I had been on bed rest 3 months and bleeding like a stuck pig for six weeks. I didn’t see why anything was going to change dramatically because I was suddenly 23 weeks and I had every intention of staying on bed rest another 3 months until Bennett was a big, fat, healthy baby. I knew I needed to be at the hospital but I was just too freaked out and in denial to grasp the magnitude of what was happening.

So every time I saw my doctors I would say, “Okay, if I get to 34 weeks can I go home?” or some other ridiculous question about stabilizing and being able to leave Baylor until I was term. HA. It became a joke and whenever they came to see me (multiple times a day, I think they liked me) they would say, “NO, you can’t go home.” With a big smile, before I even asked. At least we were in good spirits, right?

My state of mind also explains why one of the NICU doctors was concerned about us - he would come talk about outcomes at 23 weeks and we kept asking about 28 weekers. My doctors said IF we could get to 28 weeks they advised a c-section because Bennett would have a 90% chance of survival and 10% chance of severe disability. The reasoning was that my placenta was shot so a c-section at that point would allow us to get him out before I had a complete abruption or the bad placenta slowly started to starve him to death (IUGR) which is standard in these cases. But Bennett, little piggy, was actually ahead on growth. All that chocolate I ate on bedrest must have helped.

SO rambling - the NICU doctor was worried because he knew the reality of the situation - that it was crazy I was still pregnant and any moment this baby was coming out. But I kept talking as if I was going to be pregnant another month? Hahahaha… he was very patient with us but I learned later from our NICU nurse that this same doctor continued to come and check in on Bennett right until he came home. She asked him why, knowing Bennett wasn’t on this doctor’s team, and he told her the story - about how he counseled us before delivery and realized we didn’t quite “get it” and he was thrilled to see Bennett was doing okay.

One year ago I was newly pregnant with Emiline and on progesterone (in hopes of preventing a preemie repeat) and since my hormone levels were great, the extra progesterone was horrible! When I wasn’t barfing I was in bed miserable. We figured that out and stopped the progesterone and life was easier and Emiline was perfect. But it got us through the anniversary dates because I was passed out.

I wondered if this year would be hard, facing these dates/memories - it is in some ways. But I’m really surprised that I’m not a basket case. (Stop laughing, those of you that think I’m always a basket case.) I think I channeled my angst/anxiety/questions pretty well with the therapy assessments (Bennett’s therapy, not MINE!) and doctor visits about how Bennett’s doing now. Because I know that is what I need to focus on now - Bennett, and how he is NOW. But I absolutely believe it’s crucial to process the emotions of these life altering experiences. Otherwise it’s this lump-o-unresolved issues in our heads that at some point I think will be manifested in our relationships/mental health/emotions/bodies/something… so I’ve tried over the last two years to talk about the events. Remember them, write about it, read our journals/blogs/emails from the time, talk with those that were with us through it, look at the pictures. It’s been a long, slow healing process - sort of like Bennett’s lungs? But I don’t imagine it’s over, and I expect that the anniversaries will often cause some twinges and sadness. Though I have hope that each year, watching this little bundle of energy grow, it will get easier. The scars will remain, literally for him and figuratively for us, but they’ll be a bit less tender to touch?

I think sometimes it does catch me off guard. I can look at Bennett’s NICU pictures and I just see my beautiful baby. But when I see the NICU photos of another preemie that resembles him, sometimes I’m surprised by the tears it draws… the thought of other babies, other parents & families, going through that experience is painful. To know each day there are little babies suffering when they should still be nice and cozy inside their mother. I wouldn’t wish this experience on anyone, but I am grateful beyond words we were blessed to have this experience. Bennett, of course, is worth every single moment and the price we paid is utterly insignificant compared to the price HE paid, or the to blessings we have daily by having this little boy in our life.

Somewhere I read a quote, and I can’t remember it exactly so I’ll give you my version…

I would do it again in a heartbeat, because the heartbeat I heard was you.

Want to hear my totally silly dilemma? Well, I assume so because you’re reading our blog. Which means either you’re procrastinating doing something more important and killing time reading this, you genuinely love us, you’re addicting to reading blogs, or you love to come here and mock me. Whichever it is, happy to have you here. And since we don’t have the comments option on, I can’t hear you mocking…

Christopher needs new shoes for church, he had a pair of hand-me-downs that he managed to trash and they are no longer presentable. So my options are a) buy a new pair next time I’m at the store b) buy a “gently used” pair at our favorite kids’ consignment store which is quite a drive away c) let him wear his sneakers. And in defense of that option, they are dark blue shoes and in very nice condition. I should post a picture.

Anyway, I don’t feel making a special trip to the consignment shop is worth the money we save over buying a new pair, since it takes gas and time. I could wait until I have an errand near there. I could just buy a new pair. But he wears these shoes 4x a month and outgrows them so fast, THAT option doesn’t seem very financially responsible. Kit and I were discussing where the line is between dressing respectfully for the Sabbath (which I do think is important) and being financially responsible (do we spend money on something that will be worn maybe 12 times before being outgrown?) and laziness. I’m leaning towards the laziness option for now - let him wear sneakers until we get Sunday shoes. But does a five year old NEED special shoes for church? if his sneakers weren’t so nice then I wouldn’t consider them an option.

And is he young enough that we can let it slide? I know we’ll be more firm in our guidelines about appropriate attire as they get older, so shouldn’t that start now? We have the girls in dresses & boys in white shirts/nice slacks, though I have been known to take infants in their pajamas when I’m too exhausted to dress them up. I like the message it gives the kids when they dress in their best for church, I think it does influence them to be more reverent and respectful. Though it’s never been a fight, our kids like dressing up. Christopher ASKS to keep his church clothes on after church and chooses to wear a tie. So I guess sneakers makes me feel like we’re relaxing on the dress up standards.

I’m tired. I’m blaming this inability to decide on that.

The other dilemma is dumb because we are so lucky. We’ve been trying to figure out how much therapy to get Bennett each month. Three kinds - speech, occupational, and vision. Soon he’ll start up horse back riding, too, which is weekly. His therapists are GREAT and very flexible in increasing services if we feel it’s needed. Now his therapy has become, as his vision teacher said today, “I’m chasing him around and watching him play. There isn’t anything he needs my help with.” He’s fine, so fine in so many ways, that therapy does feel a bit silly. BUT we don’t want to cut it all because in a year he loses these in home services and transitions to the school. If he’s already in this program then they transition him to the school and it’s easier to keep services if he needs them. But does he really NEED them? I think he needs to be monitored for possible issues that may crop up but really - it’s Bennett. The child has no idea he was a preemie, and he has no intention of letting that slow him down in any way. So, for now I think we’ve finally settled on having monthly therapy (one each of the three kinds) and we’ll increase/decrease over the next year as we see fit.

See, dumb dilemmas. And in happy news, I think I’m the only one still fighting the cold. Emiline did great, I’m thankful I caught the cold because she got my immunity. When Christopher caught colds as a baby that I didn’t catch, he was miserable. Hooray, go breastfeeding antibodies!!

I’ve decided Sunday will be my official picture posting day, so stay tuned…

So, the recommendation of our church is that every member have a 72 hour kit of food, clothing, and emergency supplies. Preferably water proof and portable. We’ve used parts of ours pretty often but we’ve never had to pack it up and walk out the door (praying we never need to) - though one of these days we may do just that and take it camping as a test run. Our church also advises us to have a 2 weeks supply of water (I think we have that) and a one year supply of food staples (I think we have about six months, I need to check. I probably have my year supply of chocolate but that hardly counts as a staple.) Our kits at this point are pretty slim, since in worst case scenario only Kit & I can carry a big bag (we have a smaller one for Christopher) and if we’re hiking through the wilderness we would each be carrying a baby, too. I think I’ll store some extra emergency supplies in one of those big plastic bins and we could throw that in the back of the van.

Why would we need this, you ask? I’ve thought about that. Our area doesn’t get hit with too many natural disasters but for those in tornado areas having to get to a shelter, hurricanes, earthquakes, etc - it would be handy. Stuck in a ice storm w/out electricity. Flooding. Running away from the kids in a hurry. Camping trips are much easier w/this gear all packed. And someone once pointed out that a 72 hour kit is your first three days of food storage. Working slowly towards that one year supply goal.

I try to rotate the food & clothes in our kits during General Conference weekend (first weekend of April & October) but this year I was distracted by the new baby and didn’t, so doing it now. Here’s my inventory - and tell me what I’m missing:

cloth diapers & undies
pants/shorts/shirts/socks for kids
change clothes for us
formula & bottle
toiletries for kids & meds
2 rolls toilet paper
copies documents - ssn, birth certificates for all of us, marriage license, passports, plus info for family members to contact, utilities, all bank account/investment info, and health insurance numbers w/doctor contacts
cash
receiving blanket
towel & wash cloth
bleach
sterno
garbage bag roll
aluminum foil
matches
lighter
soap
bandana
batter operated radio
flashlight
pocket knife
mess kit & utensils
2 emergency blankets
spare glasses (just frames for Bennett)
bug spray
first aid supplies
Red Cross first aid book
food - MREs, tuna, cocoa, oatmeal
water bottles

Not in kit but here:
tent
propane stove w/extra propane
sleeping bags (3)
analog phone (for losing power but not phone line - we’ve needed that)
baby sling
diaper bag
wallet/purse w/ID
walking shoes
coats

Need to add:
sunblock
switch out batteries
more food
sturdy frame backpack
baby wipes
hand sanitizer
tarp
more clothes

Last night Moira kept repeating something and we couldn’t figure out what it was at first but patient Mo kept repeating until we caught on - it was, “I look like Allegria! She my cousin!”

So here are the cute cousins:

I took Bennett’s glasses off to swing him around (didn’t want the glasses to fly away) and set them in the window sill. I forgot to put them back on, though I didn’t realize it until Bennett pushed a chair across the room and climbed it to snatch his glasses back out of the window sill. Huh. I wonder how he could see them? I laughed and pulled him off the chair, set him back on the floor. He runs back to the chair, climbs up and carefully sets his glasses BACK on the sill and says “Ohhhh…” then laughs and puts the glasses back on his face. I love that he can take his glasses off and on now! It’s been a couple weeks since he broke them, hooray!

Early this morning Bennett’s doctor’s office called, the doc wanted our e-mail so he could send us some preemie studies. How nice was that? I love our medical people, doctors, nurses, midwife. They are great. Well, I guess we get rid of the not great ones pretty fast, but still. We work with some amazing people.

And in exciting Christopher news, he’s broken our code! Kit and I have been motivating his spelling along by using our “secret code” to describe things. Tonight I mentioned to Kit that we had s-o-d-a if he wanted some, and Christopher asked what it was. Kit told him to sound it out and he did! Then tonight I gave him another word, said Emy is playing with her stuffed p-i-g and he sounded it out and yelled PIG! He was so proud and I can’t describe the look on his face, but I’m so happy I was able to see that light bulb moment for him.

Though I had to snicker when Christopher announced he learned to break the code from the Leapfrog videos we bought them. Yes, our son learned to read from a movie. There’s some irony in that.

In exciting Mo news, she can now spell her name! And her therapist laughed because she can’t say it, but she can sure spell it and she does for everyone. “M-o-i-r-a dat pell Mo-hah!”

In cute Bennett news, he calls Emy “Bay-boo” pretty consistently. This morning around 4am we heard him walking around in the hallway and he was quiet so I tried to ignore him. Knowing any second now he would start calling for us, Kit went to grab him and I heard Bennett yell, “Momma!” That almost motivated me to get up and go to him. Almost.

Kit, Bennett, Emy & I are all sick with a cold but no one is on oxygen or retracting or dusky so we’re okay. Emy’s stomach crunches are getting her close to sitting, so I did some propping today to help her:

Yes, that would be cuteness personified.