Children's Books Tuesday: I Like You

I Like You by Sandol Stoddard Warburg

Another oldie this week, this time from 1965. Ours is a well-worn copy, but I only just introduced our boys to it a few weeks ago. Despite its small-ish look, it actually takes a while to read--especially if you have inquisitive little guys who ask questions about every picture.

This book was given to me by my college boyfriend on Valentine's Day in 1999. Then later that summer, he went out of the country to do mission work for a year and a half, and this book was one of the few physical reminders of him that I had to hold on to. I even brought it with me to India on a mission trip I took two years later. And within a couple of months of my returning to the States, that boy married me. I'm not saying that this book is responsible, but it may or may not have been a contributing factor.

This is one of my favorite pages. It's hard to see, but it says,

"And I like you because

If we go away together

And if we are in Grand Central Station

And if I get lost

Then you are the one that is yelling for me"

This really resonates with me and reminds me of the passage in the Bible where Jesus talks about leaving the ninety-nine sheep behind to search for the one that is lost.

Again, one of my favorites and again hard to read, it says,

"I would go on choosing you

And you would go on choosing me

Over and over again

That's how it would happen every time

I don't know why"

I'm looking forward to reading this to the kids again in the future. I am pretty partial to it.

-----------------------------------------------------------

If you have a post to share or if you want to see more children's book ideas, head on over the bloghop at Sue's blog!

♦

Cause to celebrate

EDITED TO ADD: It's probably a little confusing to post about how good Ella is doing right after two posts talking about trying to wrap my brain around her potentially being a "special needs child." I'm sorry about that. I'm not trying to toy with your emotions. Truly. For one, there's not an easy answer to how Ella is doing. Not having seizures and making strides in development both have predictive value, but no one can tell us in any certain terms how our daughter will turn out in the long run. Or to mix some metaphors, she's dodged some major bullets, but we're still not out of the woods. It's like watching a very slow pot of water come to a boil. For two, my emotions and thoughts are all over the place. I think I've said before that there are days where I think she'll be perfectly normal and others where I am really pessimistic about any normalcy for her. So sometimes my blog posts will reflect that. Just keeping it real. And just demonstrating how much I need a Savior that does not move even in the midst of uncertain circumstances.

----------------------------------------------------------------------

Ella says, "It's been three months since my last seizure!"

This girl is such a character these days!! She is so smiley and squeal-y it threatens to make my heart burst. I mean, get a load of that face! She is such a happy baby, and she absolutely adores her brothers--which is good 'cause they're not going anywhere for at least another fourteen years or so. She LURVES to snuggle and has the most wonderful reactions to getting tickled.

She's getting really strong. She can sit unassisted for several moments at a time now, and she is doing so much better at not slumping to one side like when she sits in the high chair. When she's on her tummy, she often gets up on her elbows and knees and rocks back and forth repeatedly; I've even observed her pushing herself forward from that position a few times. I don't know how long it will take her, but I believe she's gonna be crawling next. She can also bear most of her weight while standing assisted now, whereas before it was like trying to balance a bag of rice on its end.

Seizure-wise, as I said above, it has been three months without seizures. My optimism grows with each passing month and for good reason. Though it is not readily agreed upon in the neurological community (as is often the case with infantile spasms I've learned) three months is considered a first major benchmark. I've even heard of one neurologist saying that if you can make to 3 months, you'll probably make it to 6 months, and if you make to 6 months then a year is likely within grasp. Awesome! And if she can make it at least a year without seizures, she might get to be trial-weaned from her last anti-seizure medication altogether. Woo to the hoo!

In financial news, we learned this week that Ella application for TEFRA medicaid was approved. When I called Chris at his work immediately after getting the notice in the mail, he may or may not have made a scene in the bank with his enthusiastic response. I'm pretty excited myself actually. Right away, I started calling about all of her medical bills and asking that the claims be refiled. Since we've already been paying on them, we are looking at some reimbursements coming our way soon. What an incredible answer to prayer! Thank you to everyone who joined us in praying for this assistance.

Finally, Ella has three teeth now. After an adjustment period, wherein she bit me at least five times while nursing, we both are doing just fine with these developments. I offer the following as photographic proof of her new pearly whites.

♦

Welcome to Holland

I happened upon this essay in the first few days after we came home with a diagnosis for Ella. It is an excellent read for anyone walking the path of having a special needs child or trying to understand someone who is.

------------------------------------------------------------------

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

♦

Common Ground

Because of my Ella and our crazy summer, I've spent a lot of time thinking about what it would mean for us to have a daughter with special needs, persistent developmental delays, a handicap or whatever you want to call it. (Not to be a broken record, but we still don't know what her future holds; we're hoping for the best while trying to prepare for the worst. God, grant us wisdom and grace.)

I've thought a lot about the time before we knew anything was wrong, how even the simplest of things brings on a new wave of grief as I struggle to embrace this new (potential) reality we find ourselves in. (The tears don't flow quite as freely now, but it's certainly a process--more of a marathon than a sprint.) I have come to the conclusion that I am not alone in feeling this way. That there was likely a time for every special needs family, a time forever known as Before--before the tests, the scans, a diagnosis--when the hope grew with an ever expanding belly and plans were made that didn't include durable medical equipment and frequent doctor visits.

I've had opportunity to understand this sooner, but sometimes full knowledge is only gleaned through experience.

Opportunity in my own family even. My grandmother is one of the strongest people I know. Until recently, when a series of devastating strokes took much of her physical ability away, she was my handicapped uncle's primary caregiver for more than fifty years. To me, that's the way it has always been. But not to my grandma. For her, there was a time when having a handicapped son was not her lot in life. And you might think that perhaps half a century's worth of time would be enough to forget the grief and the what-might-have-beens, but it would not seem that way. She and I only spoke about that season surrounding Arthur's birth (wherein he suffered from erythroblastosis fetalis, also known as Rh factor incompatibility) once, but it is a vivid memory for me; and even in my adolescence I could appreciate the very palpable and raw emotions just under the surface in the telling of her story.

And yet another opportunity to understand. When my husband was born, he was two and a half months early and suffered a brain injury when he stopped breathing soon after birth. I had heard snippets of his story along the way, but I knew there must be more. Ella's condition has given me boldness to ask about what I might otherwise shy away from. One afternoon last month, I asked my mother-in-law about the circumstances of Chris' birth. You wouldn't know that she was describing events from more than thirty years ago; the fear, the questioning, the unknowns--these are things you never forget.

♦

Children's Books Tuesday #2

Last week, I wrote about my boys' current favorite book. This week, I think I'll show you Jackson's first book love . It's an oldie but a goodie.

First published in 1940, Dorothy Kunhardt's Pat the Bunny is a timeless interactive book that engages all five senses when read aloud. Yes, even smell!

We could read this over and over again (and we do). It is a perennial favorite in our house. And as these things tend to go, my oldest now "reads" it to the littles by himself. Ahhh, the bittersweet passage of time!

Well, that's all. Bye-bye. Can you say Bye-bye?

Do you have a children's book to share? Hop on over to Suzanne's blog and link it up!

♦

Recent pictures and more

More and more frequently, I happen upon my youngers having a sweet interaction. It would be hard to say who is more smitten with whom.

Jackson asked me to take a picture of him in his "hat." I'm happy to oblige.

Bedtime has continued to be a problem (though tonight was better; I'll get to that in a minute), but this morning I found my boys like this. Which kinda reinforces our decision to have them room together. They really are best friends. Who happen to call each other "poopy diapers" every now and then.

I decided that since Ella will be going to mother's day out this school year and therefore will be in the care of others, she should have a medic alert bracelet stating seizures just as a precaution. I was determined to find one that was dainty and feminine but durable, and I really like what I found. It came in the mail on Wednesday and fits perfectly.

----------------------------------------------

Tonight for bedtime, I borrowed a page from my friend Sue's playbook. I named Cooper "boss" and let him stay up later than Jackson for once. It worked like a dream, pun intended, and saved me from having to say "get back in bed" fifty bajillion times. Tomorrow night, it's Jackson's turn to be boss, and I hope we have similar results.

I kept Jackson home from school today because last night he was having some frequent stools (i'm trying not to gross out my father-in-law, so i'm using nurse-speak). By this morning I was pretty sure that it had passed, but just in case I wanted him nearby so I could watch him closely. Plus, it just seems like a good idea to not take him to school when he's potentially infectious. We ended up having a nice day together; it's rare that I get any extended one-on-one time with Jackson. At one point, I took him to the bank where Chris works because he needed to change out his insulin pump site and needed his supplies. And wouldn't you know, one of the parents of a boy in Jackson's class drove into the parking lot as we were leaving. BUSTED! At least, I'm sure that's what it looked like. I tried to explain myself, but I'm afraid I might have come across as trying too hard. Oh well, I know it was a good decision, so I guess I don't have to prove myself to anyone else.

I've been on a cooking kick lately. Again don't tell Chris, but being on a more structured schedule for the school year has really gotten me in a groove for taking care of things at home. I've slowly built my kitchen staples back up over the last few trips to the grocery store; it's so nice to have everything I need to make a complete meal again. Last night, I made an orange barbecue pork loin dish and a yummy baked potato casserole (made up the easy recipes for both as I went along) served with pre-made yeast rolls. And tonight, I tried a new to me recipe for chicken fried steak and gravy. My family would be proud of me; not only did I MAKE a gravy, but I actually ate it too. :) There's nothing better than a home-cooked meal; I just wish my maid weren't slacking so much lately 'cause with all this cooking the kitchen really needs some attention. :)

In other, since-when-did-Megan-become-such-a-Suzy-homemaker news, I've been experimenting with making our own baby food, and so far Ella has enjoyed everything I've offered her. In fact, I'm pretty sure I've ruined her for jarred bananas, unfortunately. (Incidentally, I've noticed that she is more keen on veggies than fruits. I have no idea how that happened, but she certainly didn't get that from me.) I've also made a batch of dishwasher detergent, and it seems to work pretty well in my opinion. Let me know if you want the recipe. Lastly, I have all the ingredients to make my own laundry detergent minus the 5-gallon bucket needed to mix it in. I'll let you know how that one goes.

A final anecdote: while searching for detergent recipes online, I recalled more than one person recommending the Duggars' website. I found the recipes I was looking for, but I also happened upon this link there. (I'm really not a jerk, I swear, but I literally laughed out loud at the pictures; perhaps it was the inclusion of the kite string winder that got me, I'm just not sure.)

♦

8 months and a doctor's appointment

Ella is eight months old today. Here are some recent pictures of my smiley girl.





I took Ella to the pediatrician's office today because she has The Crud (coughing, congestion, nasal drainage) like both Chris and I do. Fortunately, she has not had a fever, but I wanted to get her checked out sooner than later. Glad I did because she has an ear infection. You wouldn't know it by her demeanor--she hasn't fussed more than usual or anything.

This doctor didn't know her history, so I gave him the reader's digest version. He said he had not seen infantile spasms that often but that Ella was doing far better than any of his previous I.S. patients had. I told him that we have a lot of hope for her, and he agreed that we should.

I mentioned that she was having trouble eating from a bottle for the last month or so and that she still has the tongue-thrust motion that makes spoon feeding difficult (she still consumes a full serving and more in one sitting, but I think it takes longer than it should). I asked if a speech therapy evaluation might be appropriate. He said that it couldn't hurt, and perhaps even occupational therapy as well, and that he'd write it in his notes. I guess I should have been more pointed to say that I'd actually like a referral, like in my hand. I think I'll just go through our neurologist for that now. One thing that stuck out to me in our interaction was that he thought just by looking at her that Ella seems to be about two months behind developmentally, which made me think, "Is it that obvious?" He explained that perhaps this delay is keeping her from being on task with eating as well.

At least she continues to nurse really well, but there are occasions when I'm not with her where it is really important that she be able to eat from a bottle. Like at Mother's Day Out or one day a week when I work. And then there's a weekend trip that Chris and I have planned next month that we are hoping to make without our children. For two nights. Straight. So yeah, it'd be really good if she could re-master bottle feeding. For now, the doctor has approved my method of thickening her milk with cereal and putting a slit in the nipple with a scalpel. He said to just watch her closely to make sure she does not get choked. I tried it once, and so far, so good.

♦

Children's books BlogHop

My friend Suzanne is hosting a BlogHop today, and I think it might become a regular thing if enough people join in.

So this is my offering.

I have chosen a recent favorite of my boys. I think we've only had it a few months. At first glance, I didn't think it would have such an impact on them, but they are completely enthralled every time. We act it out, and get excited, and some of us pretty much have it memorized. It's the first book that I remember Jackson "reading" to me. He uses the pictures to help him get at the context, remembers the story in general, and has incredible letter recognition. The boy is amazing! And Cooper gets in on the act too. He really only knows a couple parts of the book by memory, but he too uses the pictures and says the dialog in the right places. We read it at bedtime, though I question the wisdom in that because this book gets 'em a bit riled up instead of calming them down. But that's alright. We all just love this book and highly recommend it.


I LOVE MY NEW TOY!

Written and illustrated by Mo Willems
(author of Don't Let the Pigeon Drive the Bus!)

♦

First Day(s) of School

I was completely alone for several hours in a row today because all of my kids have started school and/or Mother's Day Out. I only caught myself checking the crib once before I remembered where the baby was. I balanced the checkbook, didn't sleep, watched TV as loud as I wanted to, took some amazingly deep and relaxing breaths, ate way too many chocolate chip cookies, and I'm pretty sure I didn't say one word the whole time. It was refreshing. And the opportunity for such serenity repeats twice a week for the rest of the semester. Somebody pinch me.

It was not without its sacrifices, of course. For one, the drop-off and pick-up alone combined to take up four hours of my day (not to mention the prep time beforehand--both last night and this morning). And only bought me three and a half hours at home alone. Something is seriously messed up with that math. For two, I missed my kiddos like crazy, especially LaLa who has otherwise been my constant companion for nearly eight months. I got teared up leaving her because I've never put her in daycare before. She's only been watched by (primarily) me, Chris, or our close family. I was a little concerned about whether Ella would even take a bottle for them, since she's been somewhat averse to them for a while now; my mom and aunt think--and I agree--that it is because we were putting her medicine in there for a while and she got smart to that tactic. And then there's the whole seizure thing. I had already prepped her teachers at open house last week for the fact that she has a history of seizures. And somehow in the hustle and bustle of the morning drop-off I didn't mention it once--which is probably just as well because I forgot to leave her emergency anti-seizure med anyway. Not that she's ever had occasion to need it (since the criteria is five solid minutes of seizure activity and she's never gotten even close to that), but you just never know. I also managed to forget to leave any pacifiers with her which are a MAJOR necessity come nap time, and I therefore had to turn around when already halfway home to drop a couple of them off. By all reports, Ella did great, and is "a really quiet and happy baby" (don't I know it :), though she did not do very well with her bottle as I was afraid she wouldn't. We're really gonna have to work on that. . . Fortunately, she took her baby food well and didn't seem to be upset about the low milk intake.

Cooper was pretty vocal (as he has been more and more about things in general lately) about not wanting to go to school while we were getting ready this morning, but he didn't get sad until right before I left the room. Since we had played in his classroom together and then left together at the open house last week, I don't think he realized I'd be leaving him today. When I picked him up this afternoon, he did tell me that he had fun, so hopefully that translates into wanting to go back again next time. At least one of the girls in this year's class was in the same class last year, so I hope that helps him feel familiar. I need to do an All About Cooper post soon; he really is quite a character these days. I just love him to pieces. He's so punchy & rough and tumble and so incredibly affectionate at the same time. It's wonderful really. Last week, he hugged me while (fake) sniffling and with a sad face (can't remember the context) and said, "I love you, Mom. I'm so proud of you."

Jackson's doing great at "pre-kindergarten"--what he calls it. I'm just really happy that he has the opportunity, and I think he really digs the routine and structure of it all. The kid absolutely jumps at the chance to serve now, and says "yes, ma'am" with such enthusiasm I'm afraid he's gonna fall over. Briefly, I had to smile today when I saw Jackson's self-portrait hanging in the hallway outside his classroom; even if it didn't have his name on it, it is a dead giveaway for him because it has bright blue crayon circles around his eyes to represent his glasses. Apparently, Ms. Lee helped with that part.

Here are some pictures I managed to snap of their momentous first days.

♦

And so begins the countdown to a year

Okay, we had our appointment with the neurologist and things are generally good. Dr. B. even gave a "woohoo" when I told her Ella had been seizure-free for 10.5 weeks.

I asked about the EEG, and she said we didn't need to "put her through that again" unless seizure activity resumed. I kind of agree, and certainly our pocketbook agrees, but I have some lingering doubts that the bad pattern (hypsarrhythmia) on the EEG would not be resolved. I'll just have to let this one go for now.

I asked about ACTH being able to resolve infantile spasms long-term though it was only given for roughly two months (in Ella's case), stating that it does not seem to be well-understood, at least in the layman community, how it works. She said it is not in the doctor community either. But basically, ACTH is a very aggressive treatment to "tire out" the spasms before they do so on their own. Eventually, these spasms ARE self-limiting which, as Dr. B said, is why they are called "infantile" spasms and not toddler or adolescent spasms. If they tire out on their own, they often morph into other seizure types (at least one of which (LGS) is very debilitating and causes life-long problems). Much of this I knew already, but it was good to hear it from her.

She went on to say that Ella should continue on medication for now, since seizure-freedom was achieved on a handful of medications and because of her brain malformation's propensity for seizure inducement. She thinks it is reasonable to try her off all meds if she can achieve one year without seizures. Dr. B also asked that we call right away if seizures (not necessarily infantile spasms) are observed because it could mean that Ella is "outgrowing" her dosage of Keppra. Apparantly, my girl is not small :). She also said that keppra is one of the better anti-seizure meds in terms of side effects, especially when compared to phenobarb. That's good to hear. Of course, it reminds me that I haven't looked keppra up in my nursing drug books to know this for myself, but I think I'm just gonna wear my "mom hat" here and take the doctor's word for it.

I chickened out on asking about seeing the MRI. I think I will go the route of requesting the records from Children's myself; it's just a bit of a hassle and may cost us money to do so.

On development, Dr. B believes that Ella shows some strength but does appear to have "low tone." This is consistent with the physical therapist's assessment. She believes that this will cause Ella to lag behind by one to two months in achieving future milestones. Not terribly devastating news, but I've not heard it put that way before. It just gives me that much more incentive to work really hard on her PT exercises together. I wish I would have asked her if she thought the low tone was due to the spasms or the medications or both, and why it would be persisting being off the phenobarb and having no recent spasms to boot, but I only thought of it later.

Ella will now be on an every three months schedule for follow-up appointments for the foreseeable future, unless she lags developmentally or has a return of seizures. Sadly, Dr. B is moving away in a couple of months, so this may have been our last appointment with her. She told me that a neurologist would either travel here from Children's once a month or we would have to go to Little Rock for future appointments. Hm. I asked the front desk staff if they knew anything about what would happen, and they were pretty sure that the replacement neurologist would be here in the Lowell clinic full-time, just as Dr. B has been. That, of course, would be ideal for us.

So, that's the latest. Thanks for checking in on us. (I would have posted earlier, but the kitchen would not be neglected any longer and then the boys were stringing out their bedtime like fiends.)

♦

Follow-up

I'm sure I'll have news afterward, but I just wanted to mention that Ella has an appointment with the neurologist today. I really don't know what to expect. I think I'm going to ask if we can do a follow-up EEG to see if it is an improvement over the last one. She's obviously doing well clinically since it's been more than ten weeks of seizure freedom (woot!), but I'd love to have confirmation that her brain activity has normalized and that she's doing fine sub-clinically as well. Not sure Dr. B will go for that, but it can't hurt to ask. I also want to see Ella's MRI. I never have, and it is something I think I want to do. Lastly, I'm hoping Dr. B. can give me some insight as to why the ACTH can be given during one period of time and have lasting (hopefully permanent) effects. I'm still a little unclear on that. Of course, I really have no idea what Dr. B has on her agenda either, so I don't really know what exactly will occur during our appointment.

I'll try to update about it all later tonight.

Hope everyone had a lovely Labor Day!

♦

Overheard

I really want to post something profound, funny, meaningful, etc. But I don't have the time right now.

Instead, I'll try to sum up our second week of school with some snippets I might have been overheard saying in the past few days.

"Excuse me. I'm sorry. Perdoneme. This thing (double stroller) has a mind of it's own."
"Thank you so much (for holding the door, for not minding me going exactly 1.5 feet/minute down this narrow hallway and taking up the entire thing to boot, and so on.)
"You don't remember what you had for lunch again?"
"I really don't think your teacher would teach you a song with the word 'butt' in it. Are you sure that's how it goes?"
"Yes I do [have my hands full]."
"Yes, you can wear that shirt for five days. But we need to wash it in between each of those days."
"So, you don't know your friend's name, but you're going to call her Kaylee? Alright then."
(breathless) "I'm sorry we're running late. We had a flat tire!"

--------------------------------

So, how's your school year going so far?

♦

Seriously need to post something. How 'bout some pictures?

Silly boys, camping "in".


Where's Jackson, Bubba?


Oh, there he is!


How I get my Ellie fix at night.


Jackson wanted me to carry him in this. I told him he's too big and suggested he carry around his teddy bear. We had to cinch it everywhere. But it worked, and he was happy.


Proof that Cooper must do everything his brother does. Love the window shot of his diaper here.


Smiley and girly.


Cute new outfit from Cousin Kelsey.

♦