Friday, December 19, 2008
Last Christmas, revisited???
Not 2 hours after we got home, he was spiking a temp. 102.5, to be exact. And an hour after his Tylenol, it had not decreased. I had to call the nurse line because honestly, it has been so long since he had a fever, that all I remember how to do is take a kid to the ER once the temp reaches 100!!! (That's the protocol for Cece.) Ok, that's an exaggeration, but it really has been a long time since we've dealt with a fever that didn't mean hospital admission.
So I set him up with his pillow and blankie and popsicles and juice, and he went to bed excessively easily...oh yeah, he really IS sick. Hopefully, he feels better tomorrow. There have been a lot of 24 hour bugs going around so perhaps its nothing more than that. No other symptoms, so far.
But now comes the worry...will this be our 2nd year in a row spending the week preceding Christmas in the hospital? If Cece gets the same temp, there won't be any negotiations to be had with the pediatricians or hematologist. Into Peds she will go. I'm jumping the gun, I know, but I guess it is a mother's prerogative to worry herself to death, right?!?!
Well, it seems almost trite, especially given all that many of you who read this thing have been through...but if it isn't too much to ask could you say a little prayer that both of our kids are healthy for Christmas this year? That would be the absolute BEST present I could ask for.
Thanks, and if I don't write again before then...Merry Christmas, and God Bless you and your families!
UPDATE 12/20...(that makes it sound like a lot of people read this and it's some kind of news flash...ha ha!!!) Alec is cool as a cucumber this morning, and picking on his sister like normal. So at the moment it appears that our prayers are answered! Thanks!!!
Saturday, December 6, 2008
The shades of us
Anyway, a few weeks ago we were chatting along, playing in the family room, doing nothing in particular. And Alec announces out of nowhere, "Mommy, Cece is Black." Not for any particular reason, I guess, just the observation at the moment.
So I asked him what color he was. He said "Black." I found this interesting, since although he is half African American, his skin tone during this time of the year is exactly the same as his Daddy's - a beautiful light brown several shades lighter than his sister's gorgeous cocoa colored skin.
I asked what color I was. He said "White." I half-expected pink, but maybe we weren't talking actual color here. Who knows. So I asked him what color Daddy was.
"Daddy is orange."
Orange?
Orange.
What does it all mean? I'm not sure. But at the very least, it means he picks up more than I realize...and it's just the beginning of these discussions without a doubt.
On a completely different note, I'm still trying to figure out what to get the kids for Christmas. They have more toys than Wal-Mart already. We'll try to keep it simple, since they won't play with anything past the 2nd gift anyway. And I will start wrapping the few items that I do have next week. Last year, I had nothing wrapped by December 21st. That was the day that Cece was admitted to the hospital with RSV. Somehow we got everything ready by Christmas but that was a lesson for me!!!
Cece is LOVING the snow we have here in Illinois. She points out the window repeatedly and says, "Look Mommy, NOWING!!!" (pronounced like "snowing" but without the "s" :-) ) She's also eaten about a gallon of snow off of her mittens as she runs to the snow pile as soon as we open the garage door. I bought her a full-body snowsuit off of eBay so she's completely covered with no chance to get a chill in those 30 seconds that I let her adventure out into in the snow. I don't have a picture yet but I'll post one soon. Think snowmobile gear for toddlers, in pale purple. It works.
I'd like them to stay 4 1/2 and 2 1/2 forever. Would that be too much to ask?
Sunday, November 23, 2008
Another plan
I planned to meet my husband in college. I planned to get married right after graduation. I planned to have a nice job in the city and a nice house in the suburbs. I planned to get pregnant exactly when I was ready and to have two or three kids before I was 30.
Oh yeah, I planned.
Of course, this plan was not the same one that God had in mind. No, I didn't find a husband in college. I found him 6 years later (or maybe he found me!). No, I didn't get married right after graduation. But Fred and I did decide to get engaged after dating for 3 weeks...and were married 13 months later. No, I didn't find a job in the city and the aforementioned house. I found a job in a small town where I've now made a life with my family.
And I most certainly did not get pregnant when planned.
We were open to children right away after we were married. I mean, we weren't spring chickens or anything (I was 28, Fred was 39) so we figured there was no reason to wait. After a couple of years I had some preliminary blood work and was told there was nothing wrong. I guess maybe I was just afraid of what we would find out, but I didn't pursue any additional medical help for several years. When we finally did meet with a reproductive endocrinologist, they signed us up for the usual round of tests. We were officially fertility challenged.
Some of the tests came back OK. Others came back with the worst possible news for that point in our treatment. We spent the next 18 months waiting, medicating, testing, and praying. It was not a barrel of monkeys. It was emotional, lonely, heartbreaking. We were surrounded by pregnancy - friends, family, coworkers, heck it even seemed that every person I saw at the grocery store was pregnant. As much as I wanted to be joyful for them, I struggled to be anything but selfishly sorrowful. I feared that my dream of a family was not meant to be.
I was barren. Not just in my womb, but also in my heart.
We knew we were nearing the end of our options, and started to think more seriously about adoption. After a lot of discussion and research, we decided to try just one more test. If that one didn't go well, that was our sign. It would be time to stop.
And time to stop it was. Pick an agency. Do the home study. Take the classes. Wait for the license. Bite nails off while waiting for responses from presentations. Cry. Wait. Butterflies. Pray. Cry some more.
Less than a year after stopping treatment, we got "the call." Two weeks later we had Alec in our arms.
I will never forget that moment.
I often tell Alec his adoption story. I tell him how he was placed in my arms for the very first time, and how I cried happy tears and whispered in his ear "Alec, I've waited so long for you...I'm your Mommy. And I love you." It was so wonderful. Words cannot do it justice, truly. Granted, I did think I was going to throw up from nervousness. I also realized when we brought him home two days later that I had never actually given a baby a bath. Alec noticed. He cried through the whole thing. He also pooped in the middle of the night, and we couldn't locate a diaper. Yes, we were a regular comedy of errors! None the less, we found our way over the next days and weeks.
That moment did not cure our infertility. But it did cure our childlessness. It cured my pain. Sometimes I wish that I could have gone through the pregnancy experience...but what I now know is that I would only have wanted to give birth to MY children. Alec and Cece. They are the children that God made Fred and I to parent.
And I couldn't be more blessed.
Saturday, November 15, 2008
Knock Knock...
Alec and I stayed out until the official end of trick or treating, even after dark. His expression in this pic says it all.
Cece in her "big girl" bed. No more crib for this little chickie!
After her first night in her new bed...sideways, but still in it!
Alec reading to his Cece. Aww :-)
Sunday, November 2, 2008
I know I've said it before...
I have been a little worried about Cece today. She's been VERY whiny and just not herself. Yes, she's battling an ear infection, and yes, she's working on two-year molars (still!) but my worry is that she's in some other kind of pain.
Pain crises are a common effect of sickle cell disease. They can range from very minor, requiring OTC pain meds, extra oral fluids and rest, to extremely severe, requiring hospitalization, IV pain meds and IV hydration. In small children they commonly originate as swollen fingers and toes but that is not always the case. They can cause damage to various organs in the body and over a period of years that damage can lead to other problems such as necrosis, kidney failure, and blindness.
Cece has never had a crisis to date, at least that we know of. There was one occasion a couple of months ago when we thought she was having crisis pain in her elbow, but it turned out to be "nursemaid's elbow." Her brother tried to save her from rolling off the bed and had grabbed her arm, the elbow went a bit out of place, and voila. After 3 calls to the hematologist, and preparing to head to the hospital for the requisite IV meds, her arm turned back into place and all was well.
Today I'm just not sure. She's been grabbing at her arm and her leg through the day and has really been generally unhappy - which is not like her at all. So I gave her what is referred to as a "test dose" of ibuprofen to see if it helped. It did. But I still don't know if it's just teething!!!
So here's a little prayer that Cece's not in pain.
And a BIG prayer that Abby gets some relief of hers.
Friday, October 24, 2008
Favorite Foto Friday
I do love my downtime!!!
Here's one of my favorite pictures from our outing to Blackberry Farm last weekend. Of all the activities and things to see, what did the kids have the most fun with?
Leaves.
Have a great weekend, and enjoy all of God's gifts. I'm gonna.
Tuesday, October 21, 2008
My favorite time of year
I've always loved the fall. I'm not really into summer...something about sweat that doesn't thrill me, I guess. But now, here we are as the days get shorter, and colder, and flu and cold season is coming soon - and I start to worry.
Yes, we've had 6 months of hospital-free existence. It has been AWESOME. So now I'm writing as I listen to Cece cough in her crib and wonder, how long will it be?
How long before we make the decision in the middle of the night that waiting for the pediatrician's office will just not do, and we'll run to the ER at 3 AM?
How long before I feel her sweet, curly head and notice a burning fever that will send us into Peds for a week?
How long before I will once again have to hold my darling down as she screams so that she can be poked, prodded, IV'd, cathed, xrayed and more...and how long before she'll forgive me?
Ah yes, during those trips to the apple orchards and leaf piles, I forget. It's a great form of amnesia. Sick? Who's sick? Not my kid. Look at her. She's just so full of JOY. But eventually, I feel her little hands and remember...don't let her get cold. She could end up in a pain crisis. Don't let her pet the animals in the petting zoo. She could end up with a bacterial infection that she wouldn't be able to fight.
But I guess most of all, I have to remember...don't forget to let her be a kid. Or to let her experience life. Or to enjoy every single precious moment. Because precious they are.
Right now, Abby's back in the hospital herself and struggling with yet another infection. Please keep her and her family in prayer!
Monday, September 29, 2008
Peace...with a pinch of paranoia
In other words, the healthy times.
It has been about 5 days short of 6 months since Cece's last bout with pneumonia, which was the cause of her last hospitalization. Really this is nothing short of a miracle. For a child with sickle cell disease it is just plain expected to be inpatient several times a year. (Isn't there something ironic with regard to the two definitions of "inpatient???" But I digress...) Last year she had frequent flyer status after visiting our friends in Peds 4 times, the last one ending on Christmas Eve. Thank you Lord, for the miracle of the timing on that release!!!
So although I try my hardest to have FAITH and PATIENCE and TRUST and all that good stuff, the reality is that I am always waiting. As another mom of a young child born with sickle cell disease said, "I'm always waiting for the other sickle cell shoe to drop."
Sometime soon I think I will post some FAQ's about SCD, because I sure didn't have a clue what it was all about before our beautiful girl came into our lives. But the reader's digest version is that there are a lot of issues that can come along with it, and no one can really tell you when or how or even IF your child will have to deal with them. It's a waiting game. A hoping game. A praying game.
I've never been a superstitious person, but every time someone asks me how the kids are doing I feel compelled to knock on wood. Ridiculous, I know. But this is life sometimes, for all of us. Taking a breath and hoping for the best. Taking a step and hoping not to fall. Taking a leap and letting faith show us the way.
So let me just say it out loud...and this is tough for this control freak to do...
GOD, YOU ARE IN CONTROL.
And YOU are good.
Tomorrow I attend my first patient advocate group meeting at our local hospital. I was asked to participate in order to represent parents of pediatric patients. I was flattered and surprised, and happily accepting of the invitation. I am hoping that maybe, in some very small way, I can make a difference for Cece's future - and for the future of any other children that will visit there. After all, she'll be spending her share of time in Room 204. She already has. But for now, she's sleeping peacefully in her room full of stuffed animals and waaayyy too many shoes (she has a thing for shoes - really).
Thank you Lord, for the healthy times. Please send some Abby's way.
Saturday, September 20, 2008
More prayers, please...
Wednesday, September 10, 2008
Where were you?
I'm not a conspiracy monger, a political junkie or a news hound. But I think that it is relatively safe to say that for all of us that remember September 11, it had some impact on us. Maybe it wasn't immediate, and maybe it's not obvious each and every day. Maybe it's just that you can't take clear liquids onto a plane, and that you have to have your shoes inspected. Or maybe it's that you try to remember to hug your kids just a little more every day, or tell your spouse that you love them just one more time. To me, it has been those things and more.
On September 10, 2001 I was in Peoria for a class on erosion control techniques. I'd been away from home for quite a few courses that year since I had just been promoted and needed to learn how the heck to do my new job. For this particular course, I was attending with 6 or 7 other staff members from my office. None of us were particularly close friends but still planned to enjoy our time away for a couple of nights while we were put up at a hotel downtown.
I have to admit, I really don't remember what I did on September 10. I think it was average. Nothing out of the ordinary. I didn't say one extra "I love you," I didn't say one extra prayer, I didn't think about what the next day would bring. I was oblivious, like most of us probably were.
The morning of September 11, I went down to the hotel restaurant for breakfast and met up with one of my coworkers. As we sat and ate and chatted about nothing in particular, another one of our coworkers arrived at the restaurant. She walked in and simply said "a plane has hit the World Trade Center." Now I am not a worldly person, and I guess I just didn't catch the significance or context, so I asked if there was some such place in Peoria. She said that it was THE World Trade Center in NY. We talked about it briefly and all three of us assumed it was some errant small plane, and that it couldn't be that big of a problem for them...after all, they'd been through a bombing. We left and walked to the class location a few blocks away, without much more discussion or thought on the subject.
As we walked into the hotel where the class was being held we noticed several people sitting in the bar area watching the news on a big screen TV. We saw pictures of the first tower in flames. A terrible accident, that's what we all thought. And we walked away to attend our class on the lower level of the hotel.
We sat in the basement of the hotel with no internet, phone or TV access to provide us with updates. But we knew things were bad when one of the instructors interrupted the class material to tell us that the second tower had been hit...and then the Pentagon...and then another plane had crashed in Pennsylvania. Being as we were State employees, we did not know if we were to leave and go back to our offices to provide emergency services, or to stay where we were. At the very least we all wanted to be back with our families, but were being told not to drive unless absolutely necessary. Rumors of car bombs and other violence ran rampant. We watched the events unfold in the hotel bar during our breaks, and wondered what would happen next. None of us focused on the course subject particularly well.
After class we all walked back our hotel in virtual shock. We had planned on going out for dinner, but just didn't feel safe leaving the hotel...so we ordered pizza and hunkered down in one of the rooms. We called our husbands, wives, kids, parents and friends. We cried together. We had a couple of drinks together. And really, we were just acquainances, but it was what we all needed at the time. I'll never forget it.
And I was never so happy to get home and kiss my husband.
Why do I think of these things today? I guess I just want to remember that each day is important. Maybe it's just another Wednesday, but I shouldn't let that chance go by to give my son an extra kiss at bedtime. Or spend 10 more minutes reading yet another "Olivia" book to my daughter. Or take that moment before I fall into a comatose sleep to tell my husband that after almost 11 years, I'm still blessed to be his wife. Things that I always take for granted...but that many would give anything to have back.
Where were you?
Tuesday, August 19, 2008
Prayer request
Thanks!
UPDATE 8/22/08 - Abby is home as of last night and feeling much, much better. Please continue to pray as the family awaits test results and plans for her future treatment needs.
Wednesday, August 13, 2008
Tired...but thankful
Since she became mobile about a year ago, Cece has not stopped. She goes, and goes, and goes - like our own little Energizer bunny. With only a few exceptions, the only time she sits still for more than a minute or two at a time is when she's asleep. This activity escalates exponentially when we are in unfamiliar surroundings. When we go to Target, Daddy's job is to chase Cece around the store while Alec and I shop. When we go to family gatherings or friends' homes, we plan on the fact that one of us will be chasing her up and down the stairs and trying to keep her from overturning numerous houseplants or breaking fine china.
So no matter where we go, we know that it won't take long before we hear the usual statement from those who do not know our Cece...
"Wow, she's REALLY busy!" (Yep, she sure is...but she's happy!)
"She sure has a lot of energy! Must tire you out!" (You don't know the half of it.)
"Is she always that energetic?" (YES!!!)
I can't blame anyone for noticing that she's a sweet little hummingbird, fluttering about from one thing to the next and keeping us on the chase. We say it ourselves all the time! But what they may not know is that all of that running, climbing up stairs, and mischievous laughter was not always a given.
There were many, many nights when she first arrived in our arms that we did not know if we could care for this tiny little blessing who demanded, needed and DESERVED so much.
There have been many times in the hospital or ER when we have been in fear.
There was a time that we thought she might never walk.
But God has answered so many prayers. He gave us wonderful doctors. He provided us with knowledge through our experiences with Alec that we didn't even know we'd need in the future. He led us to AWESOME physical and developmental therapists. He gave us the energy, resources and faith to be able to help Cece grow and thrive...even when we thought it was impossible.
Her start in life was not easy. She was born prematurely and spent the first few weeks of her life in the NICU. When she was placed with us at 9 weeks of age, she weighed 7 lbs 6 oz and came along with her own laundry list of doctors, appointments, medications and procedures. One way to scare the heck out of a parent is to tell them that they'll have to learn infant CPR before they take the child home. We were just a little overwhelmed (ha!).
Amongst several other issues, Cece's feet were turned in severely. In fact, her heel chords were so tight that it was impossible to manually push them into a neutral position (i.e., 90 degrees from the leg - the usual, natural position of a foot). We ended up starting her into twice-weekly physical therapy soon thereafter. We would drive home from work, pick the kids up from daycare, and drive 25 minutes to the therapy appointment. After a half hour of torturing (I mean, helping) our infant daughter, we would load back in the van and head home for the bedtime routine. Twice a week, every week. I think our van became one big McDonald's french fry pit during those months...yech.
After several weeks it became apparent that those darned heel chords were not going to let up. So we added one more doctor to the list - a pediatric orthopedist. We traveled to Peoria to meet with him for the first time, and only minutes after he looked at Cece we were watching her be fitted with plaster casts. The goal was to put her feet into a neutral position for an extended period of time (10 days) and then, hopefully, get her into some braces to keep the stretching going. We were adamant that surgery was a last resort. The risks were just too high, and the benefit too low, especially for a child with sickle cell disease.
Casting was NOT fun...starting with 1 1/2 hours of inconsolable baby screaming on the way home. But there was nothing we could do for her, except provide an unending supply of Tylenol. (For all of you who have had a child go through hip Spica casts...my hat is off to you!!!) None the less, she adapted quickly and after three or four days she could sleep again, sit again, and generally manage. The poopy diaper changing was another story...yuck. Amazingly I believe that we managed to keep those casts clean. Luckily she's never been a "blowout" kid.
Then there was the bracing. Pretty minor, really. The biggest challenge was getting her to sit still long enough to put them on every morning!!!
Now my beautiful girl not only walks, she runs. She jumps. She wears regular shoes (as long as they light up or have sparkles...or the cherished ladybug rainboots). She climbs up on stuff and gives me heart palpitations.
And I cherish every minute of it.
Run on, baby girl. Be as busy as you want.
We'll just keep chasing after you...and thanking God for everything that you are.
Tuesday, August 12, 2008
Babies, baths, and juice
Last weekend we went to a baby shower for one of our nieces. I had told Alec a few days beforehand that we would be going to the baby shower on Saturday. On Friday, he asked me when we would see the baby take a bath. The discussion of "showering with gifts" vs. "putting a baby in the tub" ensued for the next few days, including the fact that the baby was still in Cousin's tummy. Sunday evening, as we were getting ready for bed, he asked me about it again. I told him that we gave gifts to the baby, and that was what "shower" meant. I also asked him if he remembered seeing the baby in our niece's tummy, which he did.
Now, we've had lots of discussions about babies in mommies' tummies, and have explained many times that he did not grow in my tummy. But hey, he's 4, so he asks again. I'm good with that. Actually, he really doesn't ask - he will say "And I grew in Mommy's tummy!" My response is always, no, you didn't grow in Mommy's tummy, because Mommy can't grow babies in her tummy. But you grew in your Birth Mommy's tummy, and then you came to us to be our baby boy and that made us so very happy! Sometimes the explanation is more in-depth, sometimes less - I let him lead the way depending on how much he feels he needs to know at that point. But this conversation quickly took a direction I didn't expect.
"Did it go in there?" (pointing to his mouth)
I looked at him quizzically, not sure where this was going...
"Did the baby go in her mouth - like this - and then in her tummy?"
Oh my...
"Well, honey, it's not exactly like that..."
"Mommy?"
"Yes, honey?"