Happy 1st Birthday to my last little babies

Happy Birthday Ava and Westli!

Anybody who knows me pretty well, knows that I am a baby person.  I love babies, except for the sleep deprivation (see post from yesterday), I love having babies around, I love watching them grow and develop, and knowing that these are my last babies has been really hard to live with.  If I had great singleton pregnancies that were uncomplicated and the full forty weeks, we might have more, but there not.  So as much as I hate it, Ava and Wes will always be my babies.

So this will be the second and last first birthday that we celebrate for our children.  I will never have these tiny babies of my own again:

From 2009, Best of

Consequently though, we will also never have these tiny babies anymore:

From 2009, Best of

From 2009, Best of

Hopefully we will also not feel like this anymore:

From 2009, Best of

(Hopefully Daddy doesn't kill me for that one also...)

So my point here is that there are definitely some real UPS to not having anymore kids, but some major downs too.

On A&T's first birthday I remember having a lot of confusion about what to feel. I was angry that they never made it close to their due date, I was upset about how delayed they were, nervous about all the milestones I didn't know if they would ever achieve that they should have already achieved. Yet, I was so happy to have them at all.  We struggled with how to celebrate, should we celebrate their actual birthday or the one they were supposed to have?  I can't even do this struggle justice right now.

For Ava and Wes, it is very different.  I haven't even thought about their due date much.  I never considered celebrating on any other day than today. I still wonder about their milestones, but I know that they will come, eventually.  It bothers me that Wes won't be able to sit for this little birthday party, but not at all in the same way that I worried about Taylor.  Today I am happy that they had a relatively healthy first year.  I hope I enjoyed every minute of it (within reason, which means the hours between 12 and 7am don't count) like it was my last.  Sometimes I really like that Wes still likes to curl up and be my baby, though I know this can't go on forever :(  Today we celebrate how this:

From 2009, Best of

And This:

From 2009, Best of

Became this:

From 2009, Best of

Happy Birthday Babies!!!

Feedings and Sleep

We were really spoiled by Alivya, we just didn't really know it.  Alivya came home from the NICU just three days prior to her due date.  She was around 5lbs and ate only 2 ounce bottles at a time.  This changed fairly quickly though and by the time Taylor came home two and half months later, she was eating 8 ounce bottles and sleeping from 9-10pm until 8am almost every night.  Since Taylor never actually ate from bottles with any amount of success, we only had Alivya to consider in terms of the sleeping through the night issue.  She did it so easily and effortlessly that we never actually appreciated how nice it was to sleep after only two months of having a baby at home.

Wes and Ava are polar opposites with respect to feeding and sleeping.  Ava ate well for a while, but in last several months she has regressed to sort of grazing all day long.  Four ounces here, seven ounces there.  She started on solids in August and did well for a while, but again regressed to a point where she is refusing most solids now. This morning I gave her some graham crackers, which she loved, and spooned her solids in while she gnawed on the crackers.  She seemed accepting of this until she got a bigger chunk of cracker than she could handle, when she proceeded to vomit just about all the solids I coaxed into her.

Wes eats his solids pretty well, but still fusses with bottle feedings.  He will eat about 3 to 4 ounces per feeding, which makes me crazy.  I could cut out at least one, if not two feedings per day if he would take the more standard 6-8 ounces per feeding.  If I had only one baby, this grazing probably wouldn't bother me as much, but having two grazers is making life pretty miserable.  Frankly I don't have enough time in the day to make sure the rest of us get fed if I feed the babies on this schedule.  This in itself is frustrating, but the fact that I simply can't maintain this schedule means that the babies also wake up during the night makes it all so much worse.  Some nights one of them will sleep, but the other gets up, most nights both get up, but very very rarely do both sleep an entire night through.  And I must disagree with most "experts" who say that "sleeping through the night" is equivalent to having a child who sleeps from midnight to five am.  Sorry, I need, no NEED, more than five hours of continuous sleep.

On the eve of their first birthday, it is my opinion that these adorable little beings that give me so much joy when they smile and giggle, simply must learn to eat so that a) I can accomplish more than feeding and changing them all day and b) I can get a NORMAL nights sleep, EVERY night!

This is what keeps them alive:

From

From 2009, Best of

Second term

After Jon lost his job we talked a lot about what would be best for our future.  I always intended to finish the nursing program that I had started before we had Taylor and Alivya, but I didn't anticipate how much trouble it would be to transfer those credits.  This summer we agreed that I should finish, even if I had to pretty much start over.  I have decided that the most inexpensive option is the local technical college. While this option appears to be the cheapest, it may take a really long time.  The waiting list, or whatever they care calling it these days, is pretty long. Once I finally get into "core" classes, the program will be full time, but will take only four semesters... I guess...  So next week I will start my second term in the waiting game.  I will take one online course that is basically only to keep me as an active student while I wait.

Snow

From 2009, Best of

Snow has been another big interest for the kids this winter. This picture was taken about a year ago towards the end of the snowy season last year.  We took the kids out for the first time just to play in the snow.  They didn't particularly like getting ready for it, and Taylor really didn't like being out in the cold for very long, but Livi just loved it.  She might have played out there for much longer if we could have.

So it was not too surprising this fall that they were very excited about snow.  Every time we got a few little light flurries falling from the sky they whined and complained about wanting to make a snowman.  For a month all I heard about was building "snowmans".  December 8th we finally got some real snow, and Jon bundled them all up to go out to build the snowman.  Unfortunately though, the snow was not the right consistency and even though Jon tried, he could not build a snowman. The kids were pretty happy still the same.  They still get excited when snow falls, but I will be excited when the snow is done falling.  I think I have come to appreciate Jon's love of spring, summer is too hot, winter is too cold, and fall just means winter is so much closer... guess that leaves spring... :)

Pretend

Livi and Taylor have really come to a place where pretend is more than just singing into fake microphones or talking on anything that resembles a phone.  They spend time now creating stories and worlds with their toys which they seem to totally understand.  I understand only bits and pieces of it, but it amuses me what parts they take from our world.  The other day they were playing and I over heard them talking about going to California.  They have an aunt and uncle who live in California, but otherwise this is not a big topic of conversation around here.  So I was surprised to hear them picking up on that, there are many places that we talk about a lot more that I have not heard them talk about in their play.  Sometimes I hear them talking about things and I choose to inquire.  Just a few minutes ago, Livi was talking about Jon Stanis, so I said to her, "Livi, Jon Stanis is your daddy." She proceeded to inform me that she knew that Jon Stanis was daddy and that I was her mommy and Taylor's mommy too.  So I asked her if she knew my name, which she told me was Mommy.  I said, "I am Mommy, but Daddy's name is Jon, do you know my name?"  I was totally shocked to hear her say Julie.

From 2009, Best of

It is fascinating to me how they have sort of emerged from this place of not really understanding anything around them, and in a really short period of time, they suddenly understand so much.  I find myself thinking about things more than I had before, like what programs I watch while they are around.  Livi is so adept at picking up on TV programs and movies.  I was watching her face the other day while a more adult like movie was playing, I don't remember which one, but it was at a point were the characters where very happy and joyous.  Even though she probably didn't understand why they were so happy, I could see this expression of pure joy on her face and I knew that she understood the overall emotion of the moment.  This is very different from Taylor, who will do this occasionally (usually during kid movies) but usually just ignores the TV.  Just another example of how much I love watching their development.

From 2009, Best of

Taylor continues to find hours of entertainment in pluging in and unpluging any chord that he can find.  I can't understand the fascination, but we try very hard to embrace his interest while still keeping his environment safe.

From 2009, Best of

Potty business

From 2009, Best of

I think the last time I posted about potty training I was probably pretty frustrated. In the first weeks of November, I told Alivya that I went to the store to get more diapers for her, but he store said that they were out. I told her that the store said she was too big for diapers and she would have to use the potty. We spent three days doing the naked method again, then I put underwear on her and told her that underwear were not diapers and she must keep them dry. She did pretty darn well, and kept them dry. She had no accidents. I put pull ups on her when we went out and when she took a rare nap, and of course at night, but otherwise, she wore underwear and she kept them dry. We rewarded heavily with stickers, treats, and little toys, and pretty quickly weaned her from pull ups at all during the day. Within a week I was able to get her to sit on the cushy tushy on the big potty, and just a few weeks after that we weaned her from pull ups at night. Just after Christmas she wanted to spend the night at her grandmas and when we picked her up the next day we forgot her cushy. At first we thought we would have to go back and get it, but instead we told her it was at grandma's house and we couldn't get it. So she used the regular potty with out anything... the next day her grandma dropped it off, but we put in a closet and she has not asked for it since. So in less than two months she not only potty trained, but weaned off all the extra supportive things including potty chairs, diapers, and treats and rewards. She can do it all by herself from realizing she needs to go to flushing, putting away her stool, and turning off the light. We had some trouble getting her to go poo, but a little bit of ice cream incentive and a push with a laxative broke those fears too. I am super proud of her. Back when we were struggling so much, I never thought she would do so well so fast. She occasionally doesn't make it in time, and once or twice wet the bed, but I think these are small set backs in the big picture.

Taylor really seems to understand potty training and the need for it, but he can't seem to understand when he has to go or if he is wet.  I think he is in denial about being wet since he will be honest sometimes, but not others.  I really do think that he can't tell when he has to go, and until we can find a way to help him recognize those signs, potty training just isn't going to work for him.  He tells me he wants to be a big boy and wear big boy underwear, he can tell me that pee pee and poo poo go in the potty and not in his pull up, he can pull up the pants and underwear/pull up, but he can't seem to tell when he is going to go.  In fact sometimes he sits on the potty and I say, "did you go?" and he says "yup" but there is nothing there.  Even though he sees that there is nothing there, he will insist that he went and it is in there (the potty bowl).  Livi is most upset about this, she wants him to wear big boy underwear more than he wants to.  She says, "but Taylor IS a BIG boy!" Its very cute, and I hope that he will be ready soon.

From 2009, Best of

From 2009, Best of

No more school

When Taylor turned three he was discharged from the county's Birth to Three program where he had been receiving services for speech and language, physical therapy, and early intervention education.  Kids like Alivya (who had also received these services at some point in her first three years) graduate and move on to traditional preschools, but kids like Taylor, who continue to demonstrate a need for services are thrust into the local school district.  This transition was terrifying and generally pretty clumsy for us.  It really helped that I was a hormonal mess when it happened and the first day of "school" fell on the first day following the biggest ice storm that I had seen since I was in high school, at least ten years before then.  It also helped that I went into premature labor, delivered two more babies pretty early, and Jon broke his arm.  My point is there were a lot of unrelated road hazards along the way.

By fall, though, a bunch of these things had resolved and some of the related hazards had also resolved, and we were running like a well oiled machine (we being the school, the cab, Taylor, and myself).  Taylor had his annual EIP meeting in November to discuss where he is and where we are going with regard to his continuing need for services to help him "catch up" to his peers. We have felt that Taylor's progress has been steady and his gains are not difficult to see.  His speech has exploded in the last year, he is following directions better and with more understanding than ever, he learned his colors, somewhat unconventionally, but learned them none the less.  Taylor's physical issues remain some dis-coordination when running or walking briskly, but have otherwise resolved.  So there were a few things at his EIP that were not surprising.  PT felt that he was able to safely navigate his surroundings and play areas, which is really the only consideration for having physical therapy in the school district.  I will continue to monitor his general coordination and follow up with his physical rehab doctor and pediatrician as I see necessary, otherwise he has been discharged from PT.  His speech and language teacher, who has always given Taylor due credit for the progress he has made given his history, continued to beam at his progress.  I expected this, and I expected that she would want to cut some of his services, but I did not expect her to cut as much as she did.  Taylor went to "school" for a half hour twice a week to meet with her, now he will meet with her only once per month at our play group.

I think if this were Alivya she would understand more since she adores the idea of going to "school".  She tells me all the time that now she uses the potty (another post) so she is big girl and can go to school.  So far we've been able to satisfy this order by calling the Thursday morning play group "school", but I don't really know how long that is going to work.  Taylor on the other hand was probably more attached to his "cab" who was responsible for getting him to and from school than actually the school itself.  I don't think he has realized yet that the cab should have been coming to bring him to school, but when he does, I think he will be sad.

As I always have been, I am reserved about all of this.  I super happy that she thinks he is doing well enough to see her so little, but I worry about him keeping his momentum.  It was his speech teacher who asked me if I though Taylor was "closing the gap" between him and Alivya.  The answer is yes, he is "closing" the gap, but the gap remains.  There is a lot of debate in this house about whether this gap is simply the difference between a boy and a girl, the difference between one unique child and another, or if it continues to reflect the delays that he has always exhibited...  I just want progress to continue, I don't want him to fall behind again because we withdrew these services too quickly.

From 2009, Best of

I am super humbled as I realize the things that I could be worrying about with regard to Taylor's development and future, but still I worry because I am his mommy and its my job.

From 2009, Best of

Another year older

Today is my birthday. For many people, this year would be the first of my last birthdays, but I don't mind birthdays too much. There have been a lot of things in recent years that have reminded me that I am in fact getting older, even though I don't usually feel "old". My kids turning four, my nephew turning 11, my ten year high school reunion, the babysitter telling me that one of my best friends was her teacher... all things that remind me that time is passing. I am sure in the next decade this list will be more depressing and probably more profound, but for now it is what grounds me in reality.

I had a wonderful birthday. I went to dinner with my mom, husband, and his mom. We went to a local fondue restaurant called The Melting Pot. It was a very unique experience. The meal is served in four courses, each of which (except for the salad) are meant to be dipped/cooked in the fondue (the first is cheese based, the second is a salad, the third was the entree and broth based, and finally a dessert chocolate based). Everything was bite sized, so it didn't look like much, but was very satisfying. It was good for conversation and definitely perfect for spending some time away from the children. To love your children is definitely to want to spend at least a moment away from them, but not too many moments :)

Anyway, after all that, I also received some very nice gifts, things that I have been tempted by many many times, but never felt justified to actually buy for myself.

Cuisinart Professional Food Processor

Wacom Bamboo

I played around with the Wacom and created this:

From 2009, Best of

Too much fun!

Thanks Mom, Kay, and Jon!

Christmas 2009

From 2009, Best of

Obviously I am backtracking here a bit, but this holiday season was filled with a lot of work to be done. I've never felt so much like swimming up stream. I don't think that I am working too many more shifts, but I think the spacing of them has given me this feeling of not being able to get things done. It helps that five out six birthdays also fall within 16 days of Christmas. Anyway, Christmas this year was a really big deal for Alivya and Taylor. They told me about things they remembered from last Christmas, and where super excited about everything related to Christmas this year. I never did get a video of it, but Taylor dragged every person who stepped foot into the house into our "library" where the tree was, and exclaimed "We have a Christmas Tree!!!!" Then he would throw open his arms and giggle with glee. It was incredibly adorable. He showed everyone everyday, even if he also just showed that same person the day before. It never got old for him.
Everyday they both talked about Santa and presents, cookies and reindeer, and bells and snowmen. Everything about Christmas was huge and amazing and so very exciting.

From 2009, Best of

Even now, they continue to jabber on about how Christmas will be here again. When we took the tree down, Taylor was distraught. I never felt more grinch like. He said to me,"Mama, Where you take mines tree?" Just like a little boy Cindy-Lou-Who. I said, "Taylor, I am bringing the tree downstairs, and will bring it back next year." Which felt just like a big grinchy lie, even though it wasn't. It was like ripping his tiny heart out... poor excited kiddo.
The kids had a wonderful Christmas. The movie Up has been huge in the past couple months, so they both asked Santa to bring them a balloon. Santa did not disappoint, Christmas morning they woke to find one pink balloon for Livi and one blue balloon for Tay, as ordered.

From 2009, Best of

They were also given some adorable clothes, lots of new toys and games to discover. I am not sure if they totally understood the giving part of Christmas this year, but they did seem to understand that it wasn't all about them. They enjoyed the annual viewing of A Muppet Christmas Carol, and understood more about what was going on then I really imagined they would.
Wes was tired and cranky for most of the holiday. I think there were too many people and too much noise and excitement for him. I am sure next year will be little bit better. Ava, like usual, just rolled with the punches. She was amiable, happy at times, zoned out at others, but generally content.

From 2009, Best of

Santa went over better this year than last, though neither of my big kids wanted to smile. Taylor didn't cry, he told us he was going to be "big" about it, but he certainly wasn't happy. Santa was more afraid of Ava and Wes than they were of him. Must be a first for him... He kept repeating, "don't get the beard!" Seriously I think Santa might need to seek some professional help for this :)

From 2009, Best of

From 2009, Best of

Welcome 2010

Jon and I rang in the new year quietly at home over a couple mild Mimosas. After I got home from work with less than an hour of 2009 left, we turned on the movie Public Enemies and allowed the year to pass almost without notice. While 2009 gave us Ava and Westli, 2009 also gave us lay offs and financial chaos. Goodbye 2009, fond farewell. Obviously we don't know what 2010 will have in store for us, but I can at least hope that it could be better than 2009. So bring it on, WELCOME 2010!

Last post of the year

I am not big on making New Year's Resolutions, but subconsciously I think I resolve to make more regular posts on this blog every year... I have noticed that I generally post the most in January and slowly slough off until there is like one or two posts in December. Sorry, I guess I get so consumed in my life that I forget to keep a record. Anyway, this is the last blog post for 2009, and is just a couple things that I forgot to post, but want to remember someday.

Ava has been meeting some milestones: Ava has been sitting since mid October, and is working on getting in and out of sit on her own. Right now she gets out by leaning over one leg like a stretch and waiting for her legs to sort of give in to nature and flip her over. It is painful to watch, but doesn't really bother her much. She gets into sit when one of us puts her there, for now. In the first week of December, she began to discover the power of her arms. She started by moving in circles, pivoting around her belly, then she started to pull just a bit, and now, moves anywhere she desires by powering along those cute chubby arms. She is just starting to involve her legs some, but is pretty mobile just with the army crawl. She also has been drooling buckets for months, but in November she started gnawing on everything, bottle nipples, toys, furniture, and she got pretty cranky. Everyday I checked her gums hoping that it would be the day that I could say the tooth was in... finally on December 30th, Jon felt a tiny little sharp object poking ever so slightly through her top left gum. FINALLY!

Wes is pretty content continuing to do what he does, ROLL. Wes likes to be curled up and rolling. He doesn't really do it to get anywhere, but more or less to be in some other position. He is starting to have some interest in toys, if they happen to fall into his hands anyway. We are working on sitting, but it is hard to sit when you prefer to be curled up like a ball. Wes' biggest accomplishments in the last few months have been in eating solids. He takes up to three 3.5oz containers of baby food per day mixed with cereal. He loves to eat solids and doesn't seem to have many preferences in terms of vegetables verses fruits.

From 2009, Best of

HAPPY NEW YEAR!

Happy Birthday Livi and Tay!

Alivya and Taylor were born at 2:30 and 2:27 on this day four years ago. Their birth was sudden, frightening and unexpectedly expected... They were tiny, sick, and their future was as unpredictable as chaos itself. I don't think back to their birth with excitement and joy, but I have immense pride when I think of their journey. As we celebrate their fourth year, I have echos of the cautious predictions that were placed for them. The chances of survival, the chances of mental handicap, the chances of physical handicaps... so many numbers but at the center of all of them were children who belonged to me. They were so beautiful to me, and every step they've achieved along the way has added to my pride, my joy for them. Today they become four, they're not toddlers anymore, my oldest children are preschoolers. You'll have to excuse this nostalgia I just can't remember when they grew up. It was like suddenly they were these tiny adults, and not pudgy cute babylike kids.

This year's toys of choice turns out to be trains and extension chords. They have a Thomas the Tank Engine cake, and are so excited about it being their birthday. They seem to understand that they are four and not three anymore. They are excited about presents, cake, and the joyous expectations of Christmas haven't yet worn off.

Auction

So you might be getting tired of my posts about this, but it is really important to me to do what I can to help this family who are selflessly choosing to bring another person into their family. I confess that I copied most of this post from another blogger friend of ours, but I just didn't have the time today to put together my own post... which probably would have looked a lot like this any way, and Cindy did it so well... I wasn't able to figure out the photos though, so you might just want to read it on her blog at the link above... Anyway, her is a little bit about Michelle and why this auction is so important. Please stop by Lily's blog to check out the auction too!



Here is their story (Michelle and Brian have 3 beautiful children; Karly, Braden, Ruby (who's twin died before birth and has Down syndrome) and a beautiful Angel daughter, Lydia.)

"New Adventures
Last week, this beautiful little girl started showing up across the Internet, on many DS blogs:

Lera

Little Lera was in danger of being institutionalized. Look at that beautiful little face - she deserves a home and a family. It wasn't her choice to be born in a country where she has no value in society.

I just couldn't look away; I worried about her day & night. She had about a week to find a family. I contacted Reece's Rainbow, and told them if they can't find her a family, let me know.

Brian & I had always talked about adopting SOMEDAY - but we had thought we'd adopt a younger girl - SOMEDAY.

A couple days ago, word went around that a family had committed to Lera. I was so relieved - and a little sad that she wouldn't join our family. Then, I was THRILLED to find out Lera will be going home to my friend Tracy's home! Lera's journey will be followed on her new adoption blog!
This experience definitely triggered some interesting conversations between Brian & I ...

We have a house set up for a family of 6. We were prepared to have 4 children, and losing Lydia leaves a permanent empty space in our home.

We know we can never replace Lydia. Her loss will always be with us.

And we're very certain we don't want to have another baby; going through a pregnancy would just be too stressful. Too many reminders of what could go wrong.

And yet, we're missing a daughter, and what would be the best way to honor her memory? By keeping an empty chair at the dinner table, or by bringing home a child who doesn't have a family?

After all the discussions we'd had about little Lera, it suddenly became clear to us that were we to adopt, we'd want an older child - someone between Ruby & Braden in age, a little girl who would otherwise be destined to being sent to an institution and left there with no future. This would keep Ruby our baby, and another little sister for Karly & Braden.

We figured we'd start planning & saving up - and adopt when the time was right.

I told Brian to check out the at-risk girls on the Reece's Rainbow website. There were a few that stood out to us, but one who repeatedly drew our attention.
.
For one thing, she is a twin. She was given up at birth for having Down syndrome, but her twin was taken home. We lost a twin - and this little girl is a twin without a family. We lost Lydia, and found a little girl named Lilya.

Most children are sent from their orphanages to the institution at the age of 5 - Lilya turned 5 in August. It's amazing that she's still available for adoption.

So, we can't sit aside and wait and plan. We have to just jump in and go for it - and bring this little girl home. To our home, and make it her home.

Yes, it's expensive - but what is a life worth? It won't be easy, but the best things rarely are.

This is Lilya - soon to be Lily.


Our daughter Lily. "

So, with all that said, the Zoromski's are having an Auction to help raise money to bring Lily home, Please if you are looking for Christmas gifts, please go and check it out. Every penny will help.

* Auction ~
Our auction to help raise funds for Lily's adoption started today on Lily's blog. It will run until next Tuesday, December 15. Please check it out - and if you could pass the word around, we'd really appreciate it!

We have so many really cool items - something for everyone!

http://ahomeforlily.blogspot.com/

A little goes a long way

I wrote an earlier post about our friends the Zoromskis who have decided to adopt a little girl into their family. Her button is located on the right side of our blog... They are doing some fundraising to help pay for some of the costs of giving this child a place to call home. So if you are able, please donate, every dollar counts. And if you are not at this time, do us a favor and link to her fundraiser page, maybe someone you know can.

Thnaks!

Prematurity Awareness Day

Oh what a busy day I have. But I have a couple of minutes between appointments to remind everyone that today is Prematurity awareness day in November (Prematurity awareness month). I usually try to post something prematurity related every day in November, but this year I am simply too busy. So please think about all the babies that you know, especially those like Taylor, Alivya, Westli, Ava, and our nephew Zachary who were all born before they should have been. Premies struggles don't end when they come home, some of them last a life time. If you can, please give to the March of Dimes to help find a cure and give EVERY baby a healthy start!!!

And if you can't, then just tell five people about the harmful effects of prematurity and ask them to tell five people.

Thanks,

J and J

Oh yeah, and Happy birthday old lady! (my sister!)

Halloween

For Halloween this year we decided to work with what we already had at home. So, Livi went as a ballerina princess and Taylor went dressed as Steve from Blue's Clue's. Livi's crown didn't fit her little head so her auntie Amy put her hair up in the most adorable little piggys!

From J&J Online

The weather also didn't cooperate too well, so door to door she looked more like this:

From J&J Online

And Taylor like this:

From J&J Online

But for Taylor it was all about the Handy Dandy Notebook... he even gave up on Blue after the second house...

From J&J Online

Unfortunately the pumpkins never made it out of the patch... They had runny noses already and we thought the cold spell would probably make them rot or something ;) But they were super cute just like Livi and Tay when they were that size...

From J&J Online

Lily

Grab This Button



Our friends over at the Zoromski Chronicles have decided to adopt into their family a little girl in need of a good home. Please support this effort in anyway you can!

Good reasons to support MOD

More than 1M preemies die in the first month annually

March of Dimes: Nearly 10 percent of world's births are premature
More than 85 percent of premature births are in developing parts of Africa, Asia
But North America has world's second-highest premature birth rate
Doctors have yet to identify a reliable remedy to prevent early labor, group says

Taylor and Livi

thing (1 of 10), originally uploaded by J & J Studios.

Tay and Livi are growing up so fast. Over the summer we've been working on giving them some "chores" and responsibilities around the house. They quickly mastered the art of getting dressed, brushing their teeth, and taking their "medicine" (vitamins) with the help of sticker rewards. Cleaning up toys has been a slower process, but bringing their own dishes to the kitchen after meals was easy. They are super careful and so proud of themselves for doing it. Potty training continues to be a big goal in this house, but has been another slow going process. Yesterday we started the "naked" method. They quickly tired of our living room, one of the few places in our house that is not covered in nasty carpet, and both wanted their pants on. They started the day pretty well by sitting on their potties while movies played on the TV. Then they each had a couple of accidents, and suddenly Livi just got it. She started asking to use the potty when her "tummy hurt", then started sitting on it whenever she felt like she needed to go. She went in the potty three or four times without being asked or told to. Really thought some progress had been made. Today she didn't go for hours, we kept asking her to sit on the potty just to try. Eventually she went, so we thought we would try pull ups... did not go so well. Three pull ups in two hours later, she didn't seem to understand that she still needed to use the potty. So, we'll try again tomorrow. Sigh, I hate potty training!

May her work continue without her...

Description of Eunice Kennedy Shriver,88, passed away today

"Her love for the athletes of Special Olympics was always just like that. She never hoped that people with intellectual disabilities should be somehow changed into something they were not. Rather, she fought throughout her life to ensure that they would be allowed to reach their full potential so that we might in turn be changed by them, forced to recognize our own false assumptions and their inherent gifts." ~The Boston Globe

Where did July go?

I personally don't remember July ever happening, do you? All the kids had check ups in July, all were good with nothing special to report. Livi finally got some new glasses, and I am proud to say that they are still in one piece. Knock on wood. Westli's colic is starting to decrease, so much that he has some days where the crying is very minimal. Those are my favorite days. He continues to battle severe reflux and seems to have seasonal allergies. His eyes are puffy and red most of the time, he constantly rubs at them too. Yesterday we broke down and gave him some Benadryl because he was so nasally congested and miserable. He slept so well after that and has been in a pretty good mood since. Can you say relief? Wes loves to "talk" and roll. He rolls and rolls and sort of slithers around the floor. His mobility is pretty effective for a kid who should be functioning around 4 months. Ava can roll, but chooses to remain fairly stationary for now. She is growing like a weed. She likes to reach and bat at toys and lifts her butt up in the bouncy chair to make it bounce. I don't remember A and T doing that at all. It super cute. Ava is drooling up a storm, every outfit is soaked by the end of the day. She also loves to chew on everything, but generally prefers blankets and burp cloths. I think we are going to see teeth real soon from her. Ava is incredibly flirtatious and giggles and smiles constantly. I love this about her personality. Wes is just starting to smile more socially. He has short periods during each day where you are guaranteed a great Wes smile. He giggles a little, but not like Ava yet. We have started transitioning Wes to a "regular" bottle, he is doing well, but it is slow going. We also started solids. Right now, of course, we are just getting them used to a spoon going in their mouths and the gritty texture of cereal. I think Ava will begin actually consuming solids this month. Wes will probably need more time though. Ava started opening her mouth for it today, but still pushes most of it out with her curled up tongue!

Livi and Taylor are at the library with Jon right now. We started a reward chart for them when they do things to "help out". They get stickers for brushing their teeth, taking their vitamins, getting themselves dressed/undressed, picking up toys, bringing their dishes to the sink after meals, and, of course, sitting on the potty. A battle that we have been loosing thus far. For the most part these charts remind us that we have to help them do these things everyday. I think it has made us better parents already. We have also decided to pickup our tattered battle flag and raise it for the cause... POTTY, HERE WE COME. I am very determined this time, I really think with persistence we will get there, at least with one of them. Wish us luck, I need all the encouragement I can get!

Back, Back, Back to School

So I decided to try to finsih what I started back in 2004, and since June 4th I have been busy completing the first requirement, my Certificate for Nursing Assistant. Today I completed the classroom/clinical portion of the class, now I have to complete a state certification exam before I technically become certified. I have to send in an application for this and wait for them to assign me a date and time. Isn’t that how it works, hurry up… wait… Anyway, I haven’t been in school since Taylor and Livi arrived, so I had some minor anxiety about tests and stuff, but I finished the course with a 97%, so I guess that isn’t too shabby J It was annoying to shuffle around work, school, family etc, but during the time the course ran, I travelled to Missouri for four days and had an extended forth, and managed to get all my course work done without a problem. So for me, it definitely was managable. I am sure things would be different if Jon had also been working. For now, I am going to take advantage of the time that he is home.

I am taking an entrance exam (called the Accuplacer) on Monday. I have to prove that even after five years I can still do college level math and write appropriate sentances… I am not too concerned about this, but it is one more thing. Hopefully I will be able to begin taking some core level classes in the spring, if not this fall. Timing on this has not been great, but maybe waiting a semister will help us figure out where Jon will be sitting. Flexablity is something that technical schools all tout, but in reference to medical programming, it seems to me that demand has trumpted this. Therefore, I am not sure if our family sittuation is going to make things easy in terms of school, but we shall see. For now though, I sit in limbo, waiting to see what I can accomplish with what I have.

So for now,

“Schools OUT for Summer”

I am two hours into a 12 hour shift that is dragging, you will have to forgive my sense of humor…

For those of you not on Facebook

He rolls


He smiles


She is cute


On the boat with their aunt Sonja


On the beach with uncle Greg


He just wants some love


Hanging with Casey in Columbia


Playing in Greg's back yard


Looking cool at the lake




Not so sure about those water fountains

I just can't be Happy

This will have to be a quick update since Ava, just can't be happy right now. The babies had their 6 month pediatric check up on Tuesday and an Opthalmology appointment yesterday. Everything is going well. Ava weighed 14lbs even and has been super cranky all the time recently. I think she just "doesn't" get "enough" attention. This of course is according to her. I think she gets plenty. Anyway, Wes was 10lbs 12oz. The doctor thinks that he is suffering from environmental allergies. He has puffy red eyes most of the time, rapid breathing, congestion and sometimes pussy eyes. He doesn't want to treat with anything right now, but that could be in his future. The eye doc said they both look good right now, NO GLASSES. She will see them again in the spring, but wants us to watch the "allergy" symptoms with Wes. So all good news there.


Well, best go see if Ava wants to eat or if she just wants something to giggle at.

Alivya's new glasses

Hopefully these will stick around longer than the last pair.

A bunch of movies.

Not sure why YouTube made this one wide screen. Maybe I screwed up the iMovie project.

Mon Amour

Is 6 years a long time? Sometimes I think so, but yesterday I was reading about a couple who had been married for 54 years. So I guess that makes 6 years sound like nothing. Anyway, six years ago today Jon and I were married, finally. We dated for four years, and spent the better part of three of them planning for the big day. Everything was perfect, but it fly by so fast. It really was like a heart beat in time. Its hard for me sometimes to believe that it has been that long, or at least that I am that old :)

Everyday I still feel so lucky to have married the most wonderful man I know, my very best friend, someone who knows me and loves me better than any other. Together we've been to hell and back, more than once, and while our journey has left its scars, our union endures. There is something amazing and miraculous about this, it is indescribable.

Jon, Happy Fathers Day! You really are the best dad our children could ever have. Happy 6th Anniversary, I love you so much!

Update

So life's been pretty busy around here. I am about half way through this CNA program that I need to get on with the nursing degree I am trying to attain. I was just informed by the tech that they have suspended admission to the actual nursing program and canceled my previous admission... so I guess I have to go through the LPN program. Its simply annoying. I hate hearing about how much of a "shortage" of nurses there are when the programs are simply so unaccessable. I also hate that there is this idea out there that school is such a great alternative to the problem of high unemployment rates, the fact is that the school told me that the "displaced workers" were the cause of their suspension... how does that work?

Anyway, this was supposed to be about the kids. Taylor ate two whole strawberries the other day. Why is this so special? Well the remainder of his oral aversion and dysphagia really has been a strong aversion to fruit (minus bananas) and some difficulty with chewing at times. So two strawberries is huge, and he asked for more. He also ate a small handful of red grapes the other day, and has asked for more since then... though he didn't eat them. Taylor has been loving their little wading pool. He likes to pure the water on the grass. He is super smart and always very creative. Taylor still wears orthotics to help support his ankles, and falls a bit while playing. None of that slows him down though.

Livi is as sweet as ever. She is very vocal when she wants to be. She is using full sentences when making requests like "may I please have some more juice." So grown up. She likes to copy us, and take charge. She doesn't like walking barefoot outside, and still loves books. She would read all day with anyone whose voice could hold out.

Ava and Wes are growing, probably over 13 and 10 pounds respectively, but they have not been weighed in a few weeks. Wes is starting to eat more during each feed and starting to have more awake but content time. Slowly things are improving. Most nights they sleep through 10 hours or so. Our little vacation has definitely helped us some. Wes' smiles are few and far between, but I have noticed more social embraces from him, and smiles probably aren't far behind. Ava is usually full of them. She loves attention, and gets pretty upset when she doesn't get it when she wants it.

Kids, we’re going to Missouri

Very early Friday morning Jon and I got up and began our “vacation”. Those of you who know us, know that this term is very loosely interpreted to mean, time spent away from home/ kids. We left the tiny twins in the care of my sister, and packed up the “big” twins for the trip. We left Appleton around 7:30am and arrived in Columbia, Missouri, around 6:00pm. We stopped for a picnic lunch in Iowa City where the kids got out and played to their heart’s content. It was long and tiring, but totally worth it. Taylor and Alivya could not have been better. They ate dry Cheerios with milk in their cups for breakfast, snacked on animal crackers and grapes, and for lunch, peanut butter sandwiches and apple juice. They were entertained by multiple videos on their portable DVD player, books, and their “computers”. Towards the end of the long journey, Livi was getting tired and whined a little, but all was good when we finally arrived. After dinner their Aunt Sonja took them to bed and read a book, which they fell asleep only part of the way through. All in all, they handled the long trip very well, probably because they didn’t really understand that we were actually going somewhere.
Saturday morning we got up leisurely, ate breakfast and headed out to a local park. The kids played on the playground and admired the local geese, which is very neat to a three year old. Then we had lunch at a local Mexican place, ate well, and headed to another park. There the kids were encouraged to run in the water spurts, but were totally terrified. It was the sort of day where the skies were blue, but the clouds passed lazily between the sun and the ground shading everything for several minutes. During the shade it was perfect, but when the sun peeked back out, the heat was unbearable. Since the spurts scared them, we decided to try a local beach. There the water was cold and I think the sand freaked them out. They probably would have enjoyed it if I had left their shoes on… at least that didn’t bother them a few days ago when the rain stopped at home and they both climbed into their water filled sandbox. Anyway, Taylor cried and clung to Jon like he was about to be swept off to his death. Livi allowed me to walk her in up to her waist, but then refused to go any further. Jon ended up taking Taylor to the spurts area, and I sat in the lake with Livi. After an hour or so we went back to the beach and dried off. The kids were so worn out again, that Greg read them right to sleep.
Today Greg made Livi her favorite breakfast (of the month) French Toast. Both of the kids ate really well, I am hoping for some really nice gains in their growth chart at their appointment in July. We went for a long bike ride down one of the many bike trails. Greg thought it was about 8 miles… hmm, I don’t do that every day. The kids, who rode in their awesome bike trailer, were totally burnt out! We got a quick bite to eat, and headed out to the Ozarks. It was a bit of a drive, but the kids had a blast on yet another playground. They loved swinging with Greg, and we had a little cook out for dinner. I suspect they will be totally worn out and fall asleep again during their story. Actually I am really surprised that they are still awake in the car.

Ava and Wes, have been running their brave Aunt ragged. Westli cried and cried all day long on Friday, we heard. I swear that people don’t believe me, but he does. I can’t wait for the day that it turns off, I just have to keep reminding myself that it will. I feel so bad for him because I strongly believe that reflux is behind a lot of it. Ava was a perfect angel, so I heard. I talked to Amy on Saturday afternoon, it sounded like she was having a much better day. Wes, probably worn out from Friday, was resting comfortably to that point. I don’t know if Auntie Amy will ever volunteer for extended stay babysitting again, but Mommy and Daddy really, really, appreciate it. This little trip was very much needed.
Tomorrow we are meeting one of our fellow bloggers, the McTriplets. I am not sure I would have made it through the early days of parenting my special needs children without the support and inspiration that I found on their blog. Their kids have over come a number of the same obstacles that our did and then some. Mommy McTriplet is a strong supporter of and very much involved with her local chapter of the March of Dimes also. Raising three children all with unique needs related to their prematurity sometimes reminds me how “easy” we have it, but mostly reminds me that the chaos I live in happens in other homes too. Taylor and Lorne, both being children with prematurity related feeding disorders, have a special bond that really has brought our families together. I am super excited to meet all three of her miracles and to thank her for sharing their story and helping us through some of the toughest parenting situations we’ve faced.

Take Two

A phrase that describes my life more and more these days. I had my first official class in my new pursuit of my nursing degree. I am hoping to meet with someone about my transfer status in the next week or so. As for today, I officially met the requirements for handwashing, donning PPE, and measuring weight...shew, I was worried [sarcasm implied]. It was refreshing though to be back in the game. I might be ill, but I have always enjoyed the thrill of taking tests after its been a while. Yeah, that must be an illness...

The NICU follow up yesterday went exactly as expected. They were very pleased with Ava, she "tested" out at 2 months for every skill except Gross motor, which they thought was 2-3months. Wes tested out at 1-2 months for everything. Since their adjusted age is about 1 and 3/4months, they are both considered on track. Everyone was happy and pleased with both of them. The doc suggested that we try some Mylanta for Wes before each meal.

Well, one should go prepare for dinner since all four of my children are "napping", I love these moments...

I am so angry

Thanks to the readers who left comments alerting me to the sittuation with Dakota. I have decided not to draw more attention to her and her family by posting the link, but I feel so outraged that I have to comment on the sittuation itself.

Dakota has been the victim of her mother's need for attention. After months in the intensive care unit, Dakota's mother was placed under surveillance and caught applying feces to her G-tube... the source of the dangerous infections that could have taken her life. She has admitted to applying it several times over the past several months for the attention she received, primarily from her blog.

Call me naive, but I began searching for other families who faced real challenges related to the prematurity of their children, families whose real stories could inspire me and help me through the difficult times dealing with my special children. When I started reading about Dakota over a year ago, I really believed she was like Taylor, very special. Tonight my heart aches for her, her siblings, her father, and I am sincerely grateful for the doctors and nurses and medical professionals who took the time to get to the real bottom of her "illness". I believe that her life will be better going forward as a result. I assume her mother will never become the nurse that she expressed such a desire to be... more lives spared... I hope that Dakota can and will make a full recovery and begin enjoying the life she should have had all this time. I never imagined how much damage a few of my clicks could and have had... as I fed into her desire for attention.

I haven't figured out how to apply the lessons learned here to my own practice as a health care professional, nor have I figured out how to move on from the disturbing images that it all caused me.

To the other families with whom I have connected and taken inspiration from, I still believe there is a role in blogging that helps families like ours. I hope this woman's severe illness doesn't stop families from searching for the real connections that we've made and the support that can be found here, but I know that for now, my world has been shaken...

Sincere disgust, disappointment, and sadness...

NICU Follow -up Clinic

This afternoon we'll take the babies to their first NICU follow up clinic. I think they will be impressed with Ava. She has had tremendous weight gain, eats well (despite her frequent vomiting... which is getting better), and is smiling socially, starting to poke at her toys, fix her eyes on objects and demand attention. She's also been using her hands and fingers to suck on and provide comfort when we can't be right there. If memory serves me right, and it rarely does these days :(, these are all developmentally appropriate things for a baby that is between 3 and 6 months.

I hope that they will be impressed with the progress Wes has made in terms of feeding. I think they should be happy with his weight gain, which has been sufficient but maybe not ideal. Wes occasionally seems to be smiling socially, however these are pretty limited for Daddy's benefit only. I would say he is a few weeks behind where Ava was with this skill. Wes is tracking objects that make enough noise to keep his gaze, and starting to explore his hands in his mouth. He doesn't have many comfort skills yet, and spends way too much time screaming, but I think I can make a good case for reflux on that front. I think the Prevcid is controlling the reflux better than Zantac, but I can tell that it is still very bothersome. Wes often has sour smelling breath, continues to carry a worried expression on his face, frequently grimaces and now sometimes actually brings up food so that I can see it in his mouth. The reflux strider seems to have stopped however. I plan to discuss this with his pediatrician to see if adding another type of medication would be beneficial, or if we can up his dose. Symptoms are definitely more present in the mornings and about 6-8 hours before his next dose is due.

So, we'll see how that goes.


On a side note, Dakota's mommy, if you are reading, I can't seem to get into your blog anymore... please leave me a comment... been thinking about you all.