May flowers
May 3, 2012
Well here we are…May. The months are marching along, and I’ve left you all without an update. I feel like in this world of Facebook, Twitter, and emails that an update is unnecessary and redundant. I mean, who really CARES what these kids are up to?!
I do, I guess. And if nothing more than the fact that I can look back at this in years to come, I will proceed.
The kids had their 18 month check up last night. 18 MONTHS. Grace weighs in at 23 pounds (50th percentile), and Sam at a whopping 19 pounds 11 ounces (~10th percentile). When this kid hits 20 pounds, I’m throwing a parade. I think I’ll pump an extra 10 ounces in his tube feedings today. Cause I think a parade would be awesome.
Grace is becoming such a little GIRL. She loves to read books, eat (anything, but mostly Goldfish), play peek-a-boo with Sam, go down the slide at the park (all by herself!), and sing to herself. I love watching her sit with a pile of books, “reading” to herself. She’s pretty good at playing by herself, but she definitely prefers the company of others. Yes, much like her mama. She is social, but has started to become shy around strangers. She seems to finally be getting over her horrible separation anxiety, which is great because it makes dropping her off at child care at the gym much more pleasant. Grace loves, LOVES, to play with other kids. Especially those around her age. Some friends of ours brought their one year old over the other day, and Grace spent about half an hour feeding her Goldfish crackers. One by one, into her mouth, like a little birdie. I predict she’ll have a large circle of friends. Grace has the hammiest smile when she’s trying to be silly or make Joe and me laugh. She plays really well with Sam, and even shares toys sometimes. She has eight teeth, and is currently working on her molars. What fun!!!! Nope. I take time out a couple times a day to rub her gums for her. Her usual sunny disposition turns cranky a little more often lately because of the dang teeth. This too shall pass though. She still goes to bed and takes naps like a CHAMP. No fuss. Just lay her down in her crib, give her her blankie, and it’s lights out. We feel pretty lucky about that. Grace is a darling girl, and just lights up – especially when her daddy comes home from work!
Sam is learning that being a little boy is an exciting adventure. This boy CLIMBS. EVERYTHING. This morning I caught him scaling the TOP of the couch in the front room. Sigh….we will be visiting the ER with him. I’m sure of it. He has recently learned he can climb up onto couches and chairs, and it provides endless minutes of fun. He giggles uncontrollably when he gets to throw himself around, and even more so if Joe or I give him a little push. 
Sam has been eating pretty well lately. He’s a little salt fiend, so also loves Goldfish, and veggie sticks (a potato chip type stick made out of veggies). He has also started drinking a little formula; he only drinks about 2 ounces a day (out of a total 20 ounces he needs), but it’s a start, and we’ll take it. Now that it’s getting warm out, he and his sister like to drink water out of mama’s water bottle. This is fine with me….unless they’ve been eating Goldfish. No one likes cloudy water. Sam will occasionally have tantrums. Completely out of the blue. He starts crying, and after checking to make sure I’m looking, will throw his head on the floor. Sometimes it’s hard not to laugh at him, but I’m doing my best to ignore him. Grace sometimes walks over to him and pats his head, or gives him a nuk, which is oh-so-sweet. Sam is a night owl. Once it’s past 7pm, he starts running around, throwing himself into furniture, “talking”, and just being really silly. Joe and I usually let him stay up a little after Grace simply for the entertainment. Sam loves exploring. Any new environment is new adventure to him. He loves to inspect things and take things apart. Now that it’s warm, we’ve been outside a lot, and he always makes a round of the backyard to see if there’s anything new. Sam also loves animals. ANY animal. At the park the other day, there was a line of ducks walking around and Sam started following them. As they made their way down to the lake, he didn’t skip a beat, and walked right out of the park and started down the sidewalk after them! Joe predicts we’re going to have lots of pets. Sam’s smile still cuts right through my heart, and when he gives me a second of a snuggle, I just melt.
The kids’ phenylalanine levels have been really stable. We have not had to adjust their diet or formula at all. Grace now gets 3 ounces of whole milk mixed in with her formula for her daily protein. Sam still gets some infant formula, because it has more calories than milk. There is a PKU cooking event coming up in May that Joe and I are attending. We’re really excited to learn more about cooking for PKU and also to meet more people/parents of kids with PKU. There is also a picnic in August put on by the Minnesota PKU organization that we’re looking forward to. It’s not hard to deal with their diet right now, it’s just all we know.
Joe is celebrating one year at his job with DSI. We are so thankful for this job and for all he’s learned so far. Everyday is something different, which keeps it semi-exciting. The best part is that he’s home every night, and has every weekend off! Having one predictable schedule really helps the flow of home life. I’ll have been at Woodwinds Hospital for three years this July! Can’t believe it. I love working there so much!!! I have FANTASTIC co-workers, and the night shift is full of fun people.
Great-Grandma Ann
February 21, 2012
Dear Grace and Sam,
This morning your Great-Grandma Ann passed away. She is up in heaven now with Great-Grandpa Velmer. She’s been wanting to see him for a loooong time now, so I’m so happy she gets to see him!
I wish that you had been able to meet her. She was your Grandpa Greg’s mama. She was short. She had the thickest eyebrows on a woman I’ve ever seen. (Grace, you can thank her for your uni-brow) She was quick to laugh and always had a smile on her face. She had the kind of smile that made her whole face smile. She had very blue eyes. She always let us play in a room in her apartment that had a big freezer (where she kept ice cream buckets full of Delicious Cookies), and various odds and ends. It felt like a treasure hunt to play in that room. Her bathroom had lots of lacy doilies. She loved the Lord. She prayed. In fact, I have no doubt that she prayed for YOU! She made awesome cookies (see above). She taught Grandma Lisa how to bake the best buns on the planet. She had a mug that said “Hell, I’m better”. (I’ll tell you what Great-Grandpa’s mug said when you’re older) She was a wicked good card player. And a really fabulously wonderful woman.
Love you Grandma.
Snuggly Bug
February 15, 2012
Dear Sam,
I have a new schedule at work (new since January) that gives me a stretch of 18 days off in a row. I feel very lucky to have this time to dedicate to you and your sister. What’s been especially fun is the tradition we have started of snuggling on the couch in the afternoon. Grace goes down for a nap around 1pm, and you sit in your bouncy seat to have a tube feeding. You usually fall asleep during your feeding. But as soon as it’s done, no matter how carefully I flush your tube and turn off your pump, you open your big hazel eyes and stretch. That’s my cue to take you out of your seat and head right for the couch. I sometimes turn on a stupid movie that I can fall asleep to. Then I snuggle you into me, and you fall immediately asleep. Since you’re still pretty small (a whopping 18.5 pounds!) it still feels like I have a “baby” to cuddle with. Never mind the fact that you’re walking, climbing on EVERYTHING, and getting into all sorts of trouble. You are a toddler through and through. But for that one hour in the afternoon, you’re my little baby again. And oh, does your mama love that.
Love you baby!!
Mama
So, you wanna know MORE about PKU?
January 31, 2012
Life is continuing to keep everyone busy here at casa Williams. Sam is walking now too (YAY!!!), both kids are clapping, climbing, “reading” books, playing together and getting into EVERYTHING. Nothing is sacred. If the gate isn’t put up fast enough in the morning we can find one or both kids halfway up. If the bathroom door isn’t shut, the toilet paper is unwound and the bath toys are strewn. And don’t even get me started on what happens when they are suddenly silent……
What I really want to talk about today is PKU. I’d like to give you a little glimpse into what we do every day; to us it seems routine, but to others it may be interesting!
When the kids came home from the NICU, we were drawing their phenylalanine levels once a week (Fridays). Now that they’re older, and their levels have been so stable, we’re doing this every other week. We have little lab kits that are sent to us at home, and we send them back to the lab. We usually draw in the morning (if we remember through our waking up fog) (my fog, not Joe’s) (he’s a morning person). The kids lay down, we use an alcohol swab on their heel, and we poke their heel with a lancet. It’s very similar to how diabetics draw their blood sugar levels. Once we’ve poked their heel, we use the blood to fill in two circles on special filter paper. The circles are about the size of a dime, so not huge. The kids both handle this really well. They never cry or seem distressed! The hardest part is getting these little movers to sit still! Once the blood spots have dried, we drop them in the mail, and wait about a week to get our results. Blood phenylalanine levels are very important to keep track of for someone with PKU. It is our only indicator that we are being successful with their diet. When they’re older, they may notice things like feeling “ditzy” or depressed or just not themselves if their levels get too high. As infants, our care providers would like their levels to be less than 6. Grace and Sam have both had really consistent levels right around 2. You and I (non PKUers) have levels somewhere around 2 or less. The difference between those with PKU and those without is the ability to breakdown phenylalanine. Grace and Sam are unable to break it down, and if this amino acid builds up in their body it is brain toxic. As infants and children your brain is developing so quickly and so much that if your blood phenylalanine is too high it can cause permanent damage. Which is why every baby is now tested for PKU (and many other treatable disorders) at birth. I won’t get on my soapbox here, but I get VERY worked up if I hear of parents refusing this test. Our kids would be mentally retarded if this test did not exist!!! We are SO SO lucky to live in this day and age!!
Now, diet. This is central to a PKUers life. When the kids are a little older we will have to start keeping track of everything they eat. EVERYTHING. And how much. Like, if we give them some pears (which we’ll weigh or measure) and they don’t finish all of them, we’ll have to calculate how much they didn’t eat. We’ve been very very lucky so far with their diet, in that they don’t eat a ton right now so it’s pretty easy for us to “guesstimate” what to feed them. I’ve also been pretty good at keeping a running tally in my head of what they’ve had. Here is a little sample of what meals look like on a typical day:
Breakfast – If we have low-phe waffles made, they each get one topped with applesauce or squash butter. If no waffles, then pears, mandarin oranges, blueberries, applesauce, or bananas. They are allowed one banana a day, since they are higher in phe than other fruits. Sam also really likes Gerber Graduates veggie puffs, so he’ll usually get a handful of those. Whatever that boy likes, he gets.
Snack – low-phe graham crackers, Goldfish crackers, raisins, any of the fruits they didn’t have for breakfast.
Lunch – potatoes, Veggie stix, carrots, celery, raisins, low-phe cheese, low-phe quesadilla, Sam really likes Saltine crackers so he gets one or two of those (he can only have two a day since they’re so high in phe)
Dinner – Special low-phe pasta, homemade veggie nuggets, potatoes, Goldfish, broccoli, or any other veggie Joe is cooking for us for dinner.
If I had to pick one thing that makes our low-phe cooking easier and POSSIBLE, I’d say it’s Cook For Love. Cook for Love (or CFL) is a website (www.cookforlove.org) that was started by a mom who loves to cook and has a daughter with PKU. She figured if you have to eat low-pro, why not have it be tasty as well? EVERYTHING we’ve made off this website has been delicious. In fact, sometimes we have a hard time not eating certain things ourselves! It wouldn’t be a big deal, except the main ingredient we use has to be special ordered. Most ingredients can be found at Cub (tapioca starch, Xanthan gum, graham flour), but the wheat starch has to be ordered from special low-pro food companies. One company we use is called Cambrooke Foods. Which leads me to another thing I’m thankful for – MINNESOTA STATE LAWS! It is the law that insurance companies cover the cost of low-protein foods for those with PKU. We order our food from Cambrooke and only pay our co-pay. It is a wonderful thing. Especially considering the cost. A bag of shredded “cheese” is $15. A box of pasta is $10. A bag of 6 hotdog buns is $11. Yikes! But, we are SO thankful options like this exist.
Going out to restaurants has been a pleasant experience so far. The kids have been pretty well-behaved! We usually bring along some raisins, Goldfish, and applesauce, then order a side of fruit or vegetables. When the kids are older, we are hoping to find local restaurants who will take our pre-cooked low-pro rice or pasta, and have them plate it up with their pasta sauce/veggies/etc.
Hanging out with family and friends has also been a positive experience so far. One thing I hadn’t thought of, but others have, is teaching THEIR kids not to feed OUR kids. My sister-in-law Erin, best friend Katie, and best friend’s sister/like my sister Erin, college friend Katie. All of them have taught their children that “we don’t share our food with Grace and Sam”. Thanks so much ladies!! Erin even made the kids low-phe cupcakes for my niece’s birthday so they wouldn’t be left out!!!! A special shout out goes to my mom, who has made COUNTLESS goodies for the kids, and adapted recipes, and taught me how easy it is to cook some things, and continues to search for good things for them to eat. You rock Mom!!!
One thing that’s getting hard is just realizing how easy other parents have it when feeding their kids. They can share anything they want, they don’t have to question ingredients. I keep reminding myself that this is all the kids will ever know, and it will just be their norm. They will learn how to regulate their diet. They will learn how important it is to stay on diet. They will be responsible. But it doesn’t stop me from being sad from time to time. It’s those times that I feel so lucky to have Joe as my partner through this. We can support each other and commiserate together. He’s kinda awesome. And I love him.
So, the kids eat fruit. And vegetables. And some low-protein options. But WHERE is their protein?! Because we all know that protein is the building block of muscle and other important stuff in our bodies. Right? Well Grace and Sam also drink a special formula. Right now they are on a formula called PeriFlex. Grace drinks PeriFlex Junior, and Sam drinks a combination of Junior and Infant. We mix up a day’s worth of formula every morning. We use a scale and measure to the gram the right amount of powder. Grace gets a sippy cup a few times a day with her formula. SAM on the other hand, gets three tube feedings. He is doing really well with eating and drinking, but is not close to eating or drinking enough yet. And he doesn’t drink any of his formula. He will drink water with a sippy cup, but that’s about it. And even then, it’s not more than an ounce or two a day. he eats roughly half of what Grace eats. Our goal for 2012 is to get rid of his feeding tube, but it’s going to require some hard work on all our parts! His voice has become stronger, so we are hopeful that his vocal cord has been getting stronger as well.
PKU may make our life interesting, but things could be so much worse! It’s just our norm!
Like this:
And awaaaaaay we go!!
January 10, 2012
We officially have a walker. Grace has been working on this for almost a month, and I think she’s finally got it down! Sam is not far behind! Such a great start to the new year.
We’ve been enjoying UNSEASONABLY warm weather. It’s been nice to get outside with the kids every now and then and not freeze their tails off.
I’m hoping this video works. Enjoy!!
2011 Year in Review
December 31, 2011
Hold on to your seats folks. We’re about to take you on a wild ride through 2011. A lot has happened, a lot has changed. There have been smiles and tears and laughter and fears…I know, I know – the way I weave my words is a portrait of literary art….Let’s get started!
JANUARY – The kids were still in the NICU. We were holding our breath that Grace would continue to eat as well as she had been so that we could take her home…
This is how we spent New Years Eve 2010
We got the go-ahead to take Gracie home! Here she is getting her discharge exam from one of our favorite NNP’s, Leisl
Sooo excited! Ooof, we look tired already.
Our going home PKU stuff…just the beginning of our trip into the world of PKU
HOME! I’ll never forget driving home with Grace and thinking every 30 seconds that she wasn’t breathing. The little stinker finally made some grunts about halfway home and I was able to relax…a little.
We had lots of visitors in that first month home with Grace.
First one was Uncle Ben!
Then Great Auntie Carol
Grandpa Reichelt (that was a good day – watched the rest of Band of Brothers!)
Ruby-Doo
Grace isn’t so sure about Jimmy…
Mama’s friend Katie
Grandma Reichelt
Auntie Katie
Sam was still in the NICU, so we still went up everyday to see him and work on feeding him. We had resigned ourselves to the fact that when he came home, it would be on oxygen. We took a class and brought an oxygen tank home in preparation.
Just EAT Sam!! Then you can come HOME!
Our awesome OT Kathy and Sam’s rad blue socks from his nurse Robin.
The face that quickly melted my heart…
More visits!
From Grandpa Williams
“Grandpa” Mike
Auntie Jenny
At the end of January, Sam and I stayed in a private room in the NICU so that we could do some intensive feeding. It was exhausting, but I really enjoyed having some dedicated one on one time with Sam.
Gracie visited everyday cause she missed her bro.
FEBRUARY – This is the month we brought Sam home!! Our family was finally all under one roof. It was crazy, awesome, exhausting and challenging. We could NOT have made it through this month without all the support and love from our extensive family and friends.
Learning how to put Sam’s NG tube in. We got to be REALLY good at it.
One last sibling pic in the ol’ NICU crib (thanks again for the onesies Heather!!)
All bundled up to brave the cold MN winter!
Ahhh the double snap and go. Life saver. And we’re all ready to go home!
Sooooo, here we are. Two babies. Two. Uhh, what do we do now?
I know! Have Grandma Williams come help!
We fed Sam with a syringe pushed by hand for way too long…
Lots of helpers! Joe had friends come spend the night to help once I went back to work (which I did a week after Sam came home)
Kris and Gracie
Great Aunt Becky and Grace’s bald spot
Andy and Sammers
There are those blue socks again!
Auntie Manda came to play
Visiting with Great Grandma and Grandpa
We saw some first smiles!
Got a cool stroller from the Rockwood Aunties
MARCH – We finally got a pump for Sam’s feedings! Feeding Sam was pretty intense. We struggled with every bottle, and prayed that he would catch on. He was also still on oxygen. Going out was a lot of work! We mostly stuck around home or went to the grandparent’s houses.
A pump! Finally!
Both babes sleeping at once. Success!!
We practiced sitting in a Bumbo
We listened to Grandma read us stories
And we still had help from lots of friends!
Sarah came to spend the night with us
Another Sara tried to soothe Gracie
APRIL – This month we started venturing out more. It was nice to see the buds on the trees and take walks around Sullivan Lake. We had lots of doctors appointments and follow-up visits to check out eyes and PKU levels.
We took a beautiful walk around Lake Calhoun with Auntie Katie, Julian and Leila.
We celebrated Easter with both families. Grandpa read the Cabela’s ad to Sam. I think they were picking out lures.
We got a nice Williams Family picture
Sam hung out with the Great Grands, Grandma and Grandpa and Auntie Laura
Look at those cheeks!
Annie helped me eat Easter dinner
On April 29th, I packed up the kids at 5am and went over to Auntie Kris’ house to watch the Royal Wedding. We had tea and scones with clotted cream. And little hat cookies. It was AWESOME. Or should I say “simply maaaahvelous”!!
MAY – In May, Sam had a swallow study done to check out the motility in his bowels. We were still having a lot of issues with throwing up, not eating, and slow weight gain. Those issues aside, the kids were getting to be more fun everyday. They were learning new things, and definitely making our life interesting! Near the end of May we decided to go ahead and do the g-tube surgery for Sam. Although we couldn’t get it scheduled til July.
Sitting up like a big boy for his swallow study
Such a happy girl!
Hanging out in the exer-saucer (aka Mommy’s babysitters!)
There may have been a blow out here…
Green!! Life!! Spring!!
Auntie Jenny graduated! Again!
We tried solid food for the first time.
Our little Miracle Babies (shout out Mary Birch! Dr. Daneshmand! And Auntie Sam for the shirts!!)
There were some spring storms. Joe drove around to assess the damage. Luckily we had none, but this was not too far from our house.
AND, one of the COOLEST things to happen in May – the Wicks boys made their appearance! Benjamin and Eli were born at Woodwinds (where I work), and Joe and I were honored to help Andy and Anna a bit before they moved to Michigan (sniff, sniff).
JUNE – Ah June. Cabin season. Always a good time! We went on more walks around the lake, and enjoyed sitting in the sun.
Hanging out at Auntie Erin and Uncle Ben’s with cousin Annie
Uncle Steve and Sammers
Cabin time!!!!!!!
JULY – Joe spent a lot of time in New Jersey in July, training for his new job. He was hired at Daiichi-Sankyo in May as a pharmaceutical rep. He was very happy to make the switch from working at the hospital, to working with an awesome team of people! We fit in Sam’s surgery in the short time between training trips. We also celebrated Joe’s 30th birthday!
Family.
Sam’s surgery at University of Minnesota Amplatz Children’s Hospital
Almost immediately after surgery, Sam showed interest in eating!! Yay!!
We went to a Twins game at Target Field
And spent more time at the cabin
AUGUST – We continued to work on feeding Sam. We were VERY happy we chose to do the g-tube. Both kids were starting to get into more and more!
Our neighbor Kristen and I hosted our neighborhood’s National Night Out. We did ice cream sundaes and met a bunch of people!
We found out there’s going to be a new cousin in the family!
Sam taking a nap with Auntie RM
We started standing!
Helping Mama shop at Target
Sitting in the sunshine
Meeting cousin Michelle – I think Sam likes her.
Sam practicing downward facing dog (he’s been watching cousin Luke’s videos!)
Hanging with second cousin Riley
Joe caught some awesome trout
hiiiiiii Kristen!!!!
The kids got to meet Kate, Joe’s friend from nursing school. Move back to MN Kate!!!
SEPTEMBER – We went on park outings, including a bluegrass festival, and even went to the State Fair! Twice!
Grandpa and his granddaughters
Lili’s dog dishes were moved to the basement…
We took a trip to Duluth to run the Minnesota Mile. We had a GREAT time and spent the day with family. Cousin Pete took some amazing pictures of the kids!
Pete and his muse, Sam
Pete’s handiwork
Sing it girrrrrl!!
We had a sick day and everyone dressed in sweats
We went grocery shopping…in our jammies!
We love our bath time!
Breakfast!!
OCTOBER – Becca’s birthday, Oktoberfest, and FIRST BIRTHDAY!!!
Celebrating Mama’s birthday karaoke style
Kris getting ready to groooove at Oktoberfest
The hosts with the most!
Buying winter hats
Starting to play together…mostly nicely
Feeding routine four times a day – such a patient boy!
We played in the leaves!
Grandma Reichelt and Mama had a marathon PKU cooking day! We made graham crackers, bread, veggie nuggets and biscotti. YUM!
We took a trip to a cabin in Wisconsin with the whole Reichelt family. We played games, took boat rides and hung out. It was a great time!
The kids turned ONE on October 29th! We had a nice lunch with family and the kids opened presents. It’s amazing how they’ve changed in one year!
Happy Halloween from Dorothy and the Lion
NOVEMBER – Two Thanksgiving celebrations, lots of family time, and first steps! We kept waiting for the snow to come, but instead enjoyed some unseasonably warm days.
Naps with Daddy
Visiting Santa
Playing in Daddy’s old toy box
Thanksgiving!
Grandpa and the turkey that’s bigger than Sam
Family gathering
DECEMBER – We hung out with friends, went Christmas shopping, and had one year check up’s for the kids. They continue to be healthy, happy children and we’re so blessed and lucky.
Playing with high chairs – these kids are getting to be little dare devils!
Christmas Outtake
You can see just a glimmer of mischief in those pretty eyes
REALLY happy about Christmas morning!
MERRY CHRISTMAS AND HAPPY NEW YEAR!!!
Like this:
All over the place!
December 7, 2011
Please observe these ridiculous children. This is what happens when I turn my back…for 5 minutes.
On a side note, do you think Sam is turning a bit ginger?
(Yes, that is a bruise on his forehead. Poor kid bangs the same spot every other day!)
Stay With Us
December 5, 2011
This past weekend I attended the Augsburg Advent Vespers Choir service, and the St. Olaf Christmas Fest service. Both choirs sang one of my all time favorite Christmas chorale pieces, Stay With Us. It has a fantastic alto line, and the message is so simple and pure. Stay With Us. Christmas time is one of my absolute favorite times of year. The snow, the smells, the coziness of staying inside and WATCHING the snow, and the music. Oh the music. I sang at St. Olaf all four years, and I consider myself blessed and lucky to have been a part of something so magical. Because in singing the words of artists and musicians and poets, I found myself feeling Christ’s presence so much nearer during this season. Singing the story of Christ’s birth, the anticipation of those who were waiting, the joy people felt upon His arrival, one can’t help but feel a certain majesty and awe.
As a labor and delivery nurse, I also think of that night, and how Mary must have felt, and what in the world was going through her head? Did she feel at peace? Did she have maturity beyond her years, as you often see in young mothers? Did she doubt God’s choice? Did she doubt herself? What was her labor like?! Oh to have been a fly on the wall of that stable! One would hope that the Son of God would go easy on her…
At the Augsburg Vespers service, there was a reading at the beginning that struck a chord with me immediately.
“When twilight comes and the sun sets, mother hen prepares for night’s rest. As her brood shelters under her wings, she gives the love of God to her nest. Oh! What joy to feel her warm heartbeat and be near her all night long so the young can find repose, then renew tomorrow’s song.
So gather round once again, friends, touched by fading glow of sun’s gold and recount all our frail human hopes, the dreams of young and stories of old. Oh! What joy to pray close together, kneeling as one family, by a mother’s love embraced in the blessed Trinity.”
~ When Twilight Comes, Text: Moises B. Andrade
This Christmas I have my brood safe at home, under my wing. They are not in the hospital, they are resting snug in their cribs. I can look at them any time I want, I can stroke their soft cheeks and snuggle them close. I can keep them safe, and pray over their little heads. I am oh so very lucky.
“Stay with us, Lord Jesus, it soon is evening and night is falling…”
(Gratuitous kiddo pictures to follow)
Sam and Uncle Steve
Annie “tickling” Gracie
Eating Mama’s homemade graham crackers
Grace clearly enjoyed the mashed potatoes
Cousin bath time!!
Dorothy and the Cowardly Lion
My handsome husband
MWAH!
Sam and Auntie Laura
Finishing my 5K with my friends Ashley and Elena
Bundled up to watch Mama’s 5K
Low-phe lefse made by Grandma Jan and Auntie Jenny
Playing in Daddy’s old toy box
Grandpa Jim, Sam, and the turkey that weighed more than Sam!!
Like this:
A brief open letter from Dad
November 8, 2011
Dear children,
I was once told to sandwich criticism with compliments and positive words, so here goes:
1: It has been a lot of fun coming home from work lately, both of you are pretty fun. When it’s bedtime, you don’t argue, you just go right to sleep. Grace, good job the other night with your 12.5 hours down, your Father is very proud of you.
2: The both of you are driving your mother insane during the day while I am at work, stop it. She loves you very much, and she deserves to be treated well by her children.
3: Good job getting the hang of daylight savings time. No one really likes it, but it’s part of being a member of society, and you have made a big positive step in that direction.
Love,
Dad
One year.
October 30, 2011
Dear Grace and Sam. I had every intention of writing each of you a separate letter, listing your achievements and advances and quirks and personalities…then I got busy. Feeding you, cleaning up after you (you guys make HUGE messes!!), wiping your cute little butts, wiping your sweet little noses, taking you to the doctor, taking you to Target, taking you to music class (which you LOVE, Grace), reading you books, singing you songs, learning to make low-phe foods for you, and (sometimes most importantly) taking breaks from you.
About 10 months ago, your daddy said, very seriously, to me “Wow. This year is gonna FLY by.” At that time I laughed at him and mercilessly made fun of him every time I thought of how serious he was about it. Well, here we are, and I have to say he was ABSOLUTELY right. AND, THANK GOD. THANK GOD THANK GOD THANK GOD. To say this year has been the hardest of our lives would be an understatement. We have spent the better part of this past year worrying about you and cramming all kinds of new information into our heads on how to take care of you. We spent three months in the NICU. We lost a baby. We stood vigil over Sam’s bed, as he took each breath with the help of a ventilator. We rejoiced on the day he came OFF the ventilator. We stressed out over Gracie coming home, and was she eating enough? (The answer is OBVIOUSLY yes.) And then we had two kids at home. Two. Babies. At home. What the #*$&Y?!
The first couple months at home were crazy and I don’t really remember them. We had a lot of help. A LOT. And for that we are FOREVER thankful. Your daddy and I learned what an amazing network of family and friends we have. We are blessed over and over. People came and brought us meals, cleaned our house, bought groceries, and spent the night to feed you in the wee hours. The first couple months at home was the end of winter, and the end of RSV season. We kept you in the house as much as we could, and everyone who came over had to WASH THEIR HANDS!!
Spring came, the ground thawed, we ventured out. You two grew. And developed. And we were happy.
Summer – Cabin trips, road trips, Daddy’s new job training in New Jersey (Mama realized she’d make a HORRIBLE single parent), overnights at Grandma and Grandpa’s. More growing and developing. The NICU follow up clinic said you looked so great, they didn’t need to see you until you were over a year old! You two spent a lot of time in your exer-saucers. God bless whoever invented THOSE. You started making the first efforts to crawl. Sam, you had yet ANOTHER surgery. But we were really glad we decided to do that one. Summer kind of felt like we were just doing what we could to get to the next day.
FALL – I love fall. I love the smells, I love the leaves, I love the temperature, I love the decorations, I love the colors, I love the cider, I love that it means my birthday is coming….
This fall is when I started telling people that life is really good. You two are moving all over the place and “talking” up a storm. You’re getting more independent in your play. One of your favorite things to do is stand at your toy box and turn on your music, then bounce up and down. I love that I can put both of you in your room, turn on music and leave to go do dishes, clean up, etc. You two play so nicely together and I feel so lucky to have kids with built in playmates! You both also ADORE ADORE ADORE bath time. You would stay in til the water turns cold, I’m sure, but Sam’s lips start turning blue, so, yeah, we get out.
This is not to say that life isn’t really hard sometimes. Grace, you are, shall we say, a little needy at times. You do not like to be left alone sometimes, and you’ll cry bloody murder if I leave the room. Guess what? I’m COMING BACK. I’ll ALWAYS come back. But you don’t understand that yet. Sam, you need to eat. And drink. These things are life-sustaining. We’ve been feeding you through some kind of tube since you came home from the NICU. Most times it’s fine, and I don’t really think about it. Other times it makes your dad and I bummed. We’re bummed out that you don’t want to eat. Speaking of eating, both of your diets are thoroughly complicated by your PKU. I think your dad and I have embraced it and learned a lot. Thank God it’s all we know. But it’s a huge pain in the ass to have to worry about how much phenylalanine you’re eating. It makes me really sad when I can’t share a piece of bread with you, or give you a bite of the tasty ham Daddy made. I am reassured by all the mom’s who have kids with severe nut or dairy allergies. They say that their kids adapt to it, and they KNOW what they can and cannot eat. Your dad and I are SOO thankful for the law that all children are tested for PKU at birth, and that your brains were saved by a simple diet change. We’re so thankful that you were born when you were, and that there are all sorts of recipes to make awesome tasty food, and there are companies that make low protein alternatives. But man, it sucks sometimes.
Grace, you are the proverbial apple of my eye. People always tell us how much you look like me, and it’s really bizarre sometimes to see myself reflected back at me in your face. You cried as soon as you were born, and I’ll never forget the look on your Daddy’s face as we looked at each other and said “oh!!”. Your smile absolutely LIGHTS up your face. You babble so sweetly to yourself. Just recently we learned that when we put you down for naps, you play in your crib for about 20 minutes before finally falling asleep. You love to be around people (don’t know where you got THAT from), which convinces us that you’ll be a little social butterfly. You are very adventurous in eating, and will try anything once! You are also a little dare devil. You love to be swung around, tossed around, and turned upside down. Just wait, Grandpa Reichelt will take you on the Viking Ship at ValleyFair!! You have beautiful, thick hair. Thank God it’s grown in on the sides! I love you baby girl, my first born!!
Sam, oh my sweet little boy. Will you always be this sweet and adorable? You are such a good looking baby, and people comment on it all the time. I think it’s partly because you’re so little! You top out at a whopping 16.5 pounds on your first birthday. You zoom around our house like a little race car though. Especially if you see something you want! Your happiness is contagious. It’s hard for me to discipline you because whenever I tell you NO, you just turn and smile at me!! Thankfully you’re a good boy, and I rarely need to tell you no. You love to snuggle when you’re tired, and Daddy and I take turns putting you to bed because you snuggle in so nicely! You are very curious, and love inspecting new rooms and objects. I love you Muffin!!
And so here we are at a year. Here’s to the next year and hoping that things continue go so well! Happy Happy Birthday my darling children. Daddy and I love you SO much!!
