Worship & Sibling Love

Brianna was adorable this morning while worshipping to a CD.  She loves doing hand motions and dancing.  And... I caught some of those first little steps on camera too :)  Kristopher wanted her to walk for the video.  I wanted a video her her sweet dancing.  You can see toward the beginning Emma was getting into the music too for just a second... but by the time I turned the camera back on to get some of her she was finished.  Here's my big girl.  Singing and dancing, talking to God.

(and... um... excuse the mess!)

 

Make video montages at www.OneTrueMedia.com

 

What more could they ask for?

 

Follow the Leader!

Hmm...

I opened the mail from my gas company and once again there's a HUGE bill. Not just a big bill like $40 or so (this is big because no one is actually LIVING in the house and there's no actual gas being used...). No, it's $129. OUCH. What's the deal??

So I get on my gas account online and it shows the last payment was in April. Really? Was I that bad of a slacker with bills on the other house? That's really not like me...

Then I got on my account at my bank where I pay bills from. SENT $10, $30, $38, $30... May, June, July August. It's come out of my account each time. That adds up to $108 that is somehow "lost". Where did it go? I've been doing electronic banking for much longer than that and never had a problem with that account before. They'd gotten it every month. Plus, they've been charging me LATE FEES of $5 each month the past 4 months. I apparently overpaid one month because the new bill is $22 (out of that $129) so I only should have had a bill before that of $101, and that includes $20 in late fees, so I should have paid them only $81.

$81 (previous charges) +$22 (new charges)=$103 Seems to me they owe me $5. And they need to find the other checks.

Product Review: Radian 80 Carseat

When we made the decision to adopt two children with special needs we knew a few things in our car would need to be adjusted sometime soon.

First, we were going to need another car seat.

Second, three of our four children would benefit from being backward facing much longer than 1 year and 20 lbs.

Third, three of our kids would benefit from a 5 point harness higher than 40lbs.

Fourth and last, with four children in car seats for now a thin seat which fits 3 across a bench would be very helpful

We found all of these things in a seat made by Sunshine Kids called the Radian. Radian comes in two types. One is the Radian 80 and the other is a Radian 65. The numbers refer to the weight limit on the car seat. That means that the Radian 65 holds kids in a 5 point harness until 65lbs. The Radian 80 up to 80lbs in a 5-pt harness!

My first thought was "why would I want an 80lb kid in a 5 pt harness??" My second thought "what would happen to Emma if she wasn't in a 5 pt harness during a car accident?" Not a pretty thought. She'll likely always need a 5-pt restraint in the car. Radian 80 was my answer.

I purchased a Radian 80 in July and have been using it for Emma since then. It comes with head and trunk supports for infants and toddlers. The head support is to small for her gigantic head (kidding, but it is too small) but the trunk supports are great! She sits in a straight line instead of "sinking in" to her car seat! Emma is backward facing and the car seat has been used in the second and third rows of our Chevy Venture. It fit fine in both positions, but it does impede the front seat from reclining much when in the second row. It was behind the driver's seat and I could sit comfortably to drive (I'm 5'4") but my husband feels a little cramped (he's 5'10"). There was no problem with the seat being in the 3rd row. It fit "snugly" between the second and third rows but was reclined plenty and worked fine.

The good things?

• Comes with support for infants/toddlers, perfect for low-tone.
• goes rear facing over 33lbs
• forward facing with 5-pt harness up to 80lbs
• "low profile" sides makes it easy to get the kids in and out of without having to lift them up and over something high (it also makes kids able to kick each other in the back seat though...)
• I've put the Radian, an Alpha Omega, and a high back booster across the third row just fine! Three Radians fit well I am told.

So... the down side?

• It is heavy. So carrying it around isn't recommended. (then again, it IS supposed to be in a car...)
• It is long (but not so long that it doesn't fit)

I think that about covers it! I am happy with our purchase, would buy it again (probably will, actually for one of my other kids) and would definitely recommend it to others!!

Do you ever wonder

What your kids are thinking about? What they dream about? What they're really contemplating when they look up at you? What's so scary about a grocery store to them? Whether they remember prior abuse or neglect? Whether they understand that this is for forever? If they know you're their parents? If they know they'll always be fed now?

Just curious if I was the only one thinking these things...

This is why...

International adoption grabbed our hearts. This is why we went to Ukraine. This is why after our failed attempt to adopt Sasha we knew it was Emma we were sent for. This is why I advocate for these little ones with my entire being.  This is why I am burdened for the kids. This is what happens in many many countries. This was the fate of my children. This is why... Take a look.

Your mind might change.

Their destiny has changed.

http://www.msnbc.msn.com/id/26332429

Big girl Brianna!

The past few days Brianna's once again been crying at bedtime and nap time and then settling in and going to sleep. When this was happening a few months ago I brought in the toddler bed from the garage, plopped in a mattress, and let her try it out a few nights. Then we realized she may as well sleep on the floor since that's where she always ended up. We went back to the crib and returned the toddler bed to its respective shelf (still fully assembled) and decided to try again later. After all, we then were dealing with Emma's O2 stuff and it just seemed like a good idea to have Brianna continue to be contained for more than even just her inability to stay in the bed.

Last night I sat and read a book to Brianna and she curled up on the pillow and got nice and comfy on the twin that's in the girls' room. When I considered moving her she climbed to the other end and laid down. When I asked if she wanted to sleep there it was met with a resounding YES and no fussing when I turned out the light and left the room. Of course I did stack up a ton of pillows on the small opening between the baby rail and the foot of the bed so she'd have less opportunity to fall out and made sure the floor was clear of anything she might fall on (the doll house toys were all over) if she did fall out of bed. But she went to sleep just fine and slept all night! And this morning? I heard her CRY and thought SHOOT!! and ran to the other end of the house to pick her little body off the floor and comfort her... but she was still in bed! She was sitting at the end (it's a daybed so 3 sides have 'rails') and wanted to get up! So maybe... just maybe... she'll skip the toddler bed and go right to a twin?

She napped in the twin today as well and was out cold when we left to go see the tigers... yep, REAL ones... at a friend of my parents' house. They were gorgeous! More on them later when I can post the pic's from Dad's camera too. Anyway, a full night and a half nap and no falling out of bed! What a big girl you are Brianna! (I still think I'll get a second side rail for her bed to make sure she doesn't fall out!)

WOW!

McCain said to choose Alaska gov as running mate

http://news.yahoo.com/story//ap/20080829/ap_on_el_pr/cvn_veepstakes

McCain picks Palin as running mate

http://www.msnbc.msn.com/id/25970882/from/ET/

My first political post

I generally steer away from politics and don't voice my own opinion publicly-- well, not THIS publicly. But I have to say that the news is buzzing about McCain's possible choice for Vice President... Sarah Palin. From the first I heard her name mentioned in this race I've thought Wow! That would be awesome! For starters, she's a pretty down to earth person and has done good things during her time as the governor of Alaska. Also, she got national attention-- MY attention-- when she made a public statement that she knew her son would have Down syndrome when she was pregnant, but she decided to continue the pregnancy anyway. Not only that, but her most recent statement says something to the effect of "Yes, he has an extra chromosome, but when I look at him I see perfection." That's the kind of person I want to see in a public office. That all encompassing love she shows to her youngest child (she has five).

Anyway, I'm waiting expectantly to see who McCain chooses as his running mate. Anyone else keeping an ear tuned this morning? I believe McCain will make his announcement at noon in Ohio. Some sources say Palin is still in Alaska, and it's not her. But really... who knows? I think it's great all the positive press that has been received simply from those quotes of hers making news.

(I know many people hold VERY varying ideas... so as long as your comments are both factual and kind, I won't moderate :) )

Newspaper Article

Sorry about that... fixed the link

A few months back our local paper put in a newspaper article about our family's upcoming adoption. This week the follow-up was published :) The journalist attends our church and did a great job of getting the facts across, though some of the words aren't quite mine LOL.

We're glad to have had the opportunity to share our kiddos with our community!

Here's the link if you'd like to take a look: Florida Today

"School"

I posted below that Brianna and Micah had their first day of KAD- AKA "school". I had posted earlier asking for advice and venting a little because I was very frustrated with their placements. I was told they'd both been put in classes a year behind their age group which put Micah in the infant room and Brianna in the same class she was in last year- the 1 yr olds. I made a point of NOT saying that this was a church program or anything else because I didn't want to hear "Churches are the worst for that"... but still, that's definitely what spawned my SN ministry survey. Thank you all who replied to it (it's on the right if you haven't replied yet). Many of you that have been following along for a while or know me personally of course knew what program I was speaking of though... and after I received the advice I was looking for, I 'unpublished' that post. So if you go looking you won't find it :)

A few days before Emma's open heart surgery I went in and talked with the nursery director, whom I have a LOT of respect for and who I'd e-mailed with a few times after hearing from a third party about what classes my kids were in. She and I sat down and talked for a good hour and Mike popped in on us because he was setting up some network lines and just happened to come in while we were meeting :) Seriously! LOL

Anyway, she and I talked about her concerns as well as mine and different options for the kids, reasons for different things, etc. I was pleased to have the open conversation because I'd much rather hear what someone's thinking then have them act on it without talking to me about it. I won't go into all the details here, but we did find what we thought would be a workable solution for both the kids. Micah would go to the infant room for the first hour while the 1 yr olds are dropped off and then go to the gym. Then he'd go to the 1 yr old room the remainder of the day (3 hours) and do their craft, songs, etc. Brianna would be in the "younger 2's" room, which was newly formed because of the overwhelming response in her age group. She'd likely be the oldest in the class, but only by 1-2 months and that seemed like the perfect fit.

Fast forward to Tuesday, their first day of KAD because Fay canceled all school the previous week. Brianna did great. No problems except she wanted to climb up the slide instead of going around back. She got her fingers stepped on and hopefully that'll help her learn her lesson :) I think she'll do fine in there!

Micah, well, it didn't quite work for him. He spent the morning in the infant room and through a series of... well, I don't know because I heard a few different theories, but whatever reason, he never got moved up. He also slept for 5 minutes in the middle of the morning then napped from 11:30 until I picked him up at 12:30. I asked that they please not let him nap and talked to both the infant room and 1 yr old room teachers about him moving part way through the day. Then I took Mr.ITookHalfANap home and he grouched the rest of the day, took a late nap, then was a bear at bedtime. So... his day didn't exactly work. He didn't end up with the socialization I was going for and he also ended up with a backward schedule.

Today I dropped off Brianna and she carried her lunch box into the room, gave them her crackers she'd brought for a classroom snack and was off playing when I peeked back. I stopped in on the 1 yr old room to drop off Micah's diaper bag and lunch box and asked what time they get back from the gym, just to make sure I was telling the infant teachers everything correctly. Well, they aren't going to the gym. Most of the class is too young :) Micah started his day in the 1 yr old room and as long as he did well today he'll continue to do so until they decide to try the gym. I did leave an open end that if 4 hrs in the 1 yr old room is too much, they could bring him to the infant room. But... everyone knows not to let him sleep!

I'm headed out to get them now, but I wanted to share the POSITIVE outcome we had with this program, and the JOY that it was for me to work through it with the nursery staff that really do what what's best for all of the kids :)

ps. why the naked babies?

Micah was getting ready for a bath, and then I specifically took E's shirt off for some, but she has been napping without a shirt because she makes such a mess eating that I take it off for her to eat, then she goes down to nap, then she gets up to eat... so no point in putting it back on :) Plus, it's HOT down here! LOL

Photo extravaganza :)

My littlest man here has the sweetest personality!  He's always happy, curious, and sometimes he looks at you with this sweet little grin :)  And... have I mentioned CHUNKY lately?? :)

 

Emma's curiosity has piqued as well!  Here she's taking a good long look at her shirt when I took it off to get some "healing" scar pic's-- yep... I think it's officially a SCAR!  Notice the crossed legs?  She really is the tiniest little priss I've ever seen LOL!!

I don't know why she's biting her lip here, but- you can see her HAIR IS GROWING!  It's kind of a mop look at the moment, but I'm hopeful that soon it will grow long enough to look cute and girly in clips and ponytails:)

 

Her scar-- healing NICELY!  But... she still has a ways to go as far as getting meat on those bones!  Notice the weird lump in the center of her chest?  We're told this is because her heart was enlarged so much that it deformed her rib cage... strange??

 

Emma pulled this picture off the refrigerator (behind her) and sat and looked at it and played with it for a good 10 minutes!  Brittany and Kallie made it for her, it is a get-well card from right before her surgery.  And these two beautiful lap quilts have matching partners!  Thank you for the beautiful embroidered quilts for the kids!  They'll be perfect for movies in the winter time :)

The first picture- her monitor while on O2.  The second picture- her monitor without it!!  (to know the significance of this, Emma used to be 93 WITH O2 and 85ish Without.  AMAZING!)

K's ready to take the kids on a walk! Smiley kiddos- happy to get out!

K found a new way to hitch a ride.  He holds on to the third seat and squeezes his tiny bottom onto the footrest.  He just has to watch out for Emma's KICKS!  He also likes holding the "runaway stroller" leash, he thinks it was made for preschoolers.

Livin' it up ;)

Yes, she really does like it!  Kristopher ran the last bit and beat me home :)  He's celebrating (gloating?? LOL)

K took these pictures from his carseat while I was driving the kids to school on Tuesday.

I kindof like the cross one... perspective from a 4 yr old...

Not sure what's up with all the solid colors...

 

While the kids went to their first day of KAD, Emma played nicely and I made more baby food.  60 jars... should last us about 6 days! 

More baby food... yum...  And Brianna after her first day of KAD.  Wore her out!

K's friend F came over and played.  The two of them set up the entire castle and pirate ship and play-acted for hours!  And Emma was 'discovered' this way in her crib today!  Not only had she taken down the mesh from the end of the bed (LOL) but she was SITTING!!!!  Big girl's doing SO GOOD!!

Q&A

Cammie Heflin said... Meredith, I love reading about your family, I don't like that people are rude at times. FYI I write with vis-a-vis markers on my glass jars with contents, no masking tape :)

Love it- do you use permanent or wet-erase?  I tried it with permanent this time, we'll see how well the writing wipes off.  Mike said the washable would leave black mess on his hands with the condensation so he wouldn't let me try it :)  I made another 60 jars on Tuesday.  Should last me through the weekend I hope!

 

Lu said... Hi Meredith, I'm so sorry I've not been online so much. I am still without a computer. I had to read all the news about Emma and WOW God was BUSY! Praise the Lord! I'm SO thrilled for you all!

 

You are missed, Lu!!  Nice to 'see' you again though!

Braska's Grammy said... I have become acquainted with you thru our daughter, Braska's mom. She asked me to pray for Emma, which I did. You are a blessed family, and you are sharing your blessing with others. Thank you!  I have sent your house info to about 100 families on my email list. Maybe someone will pass it on to help you get it sold.

 

Thanks Grammy!  Things are moving and looking good on the home front, we are hopeful to have it sold soon!

 

AZmomto8 said... Ah, something I remember not so fondly with Meghan, we keep Kara's diaper covered with bloomers at all times, even then she is often found in her crib naked. Thankfully only painted the bed once with poop. It is a rite of passage...

I usually put bloomers on Brianna too but that morning for church... some how I missed that step.  Then I even took the dress off for her to eat a messy lunch and by the time she went down for nap she was just in the diaper... then... well... NOTHING AT ALL! :)  Oh, and the painting... Let's just say I didn't share all the details just to preserve Brianna's teenage years.  It was worse... MUCH worse! LOL

 

Thank you all for advice on obtaining a wheelchair for Emma!  Since she doesn't have a PT in place, I plan on calling my little guys' PT for a 'consult' and help me get going with it.  I've heard good and bad things about all different chairs but I'll definitely see and feel a chair before we order it for Emma!  And the measurements, yep, THANKS EVERYONE!!

Me said... Well, Micah needs to teach Pierce a thing or 2 about gaining weight. At 2 1/2 he's only 25lbs. Great report all around!

 

I feel your pain!  Brianna's our lightweight, 2 1/2 and 21lbs.  Then Emma's 5 and 21.5 lbs.  Micah's almost 2 and 22lbs.  Kristopher's 4 1/2 and only 32lbs!  Micah could teach them ALL a thing or two!

 

AZmomto8 said... Wow, Micah is so big now, how wonderful!
Emma is about the same size as Amanda, who is also too skinny, I can't imagine a 5 year old being so itty bitty, but she is strong regardless, isn't she! They had to be tickled at how well she is healing, I know you all are.  Will they continue to work on getting Emma walking, or is the wheelchair her means to get around from now on? Did I miss a post?

 

I think Amanda and Brianna are just about the same size!  And they're pretty close in age too :)  As for Emma, we'll continue to try to get her to do as much as possible towards walking, but right now in addition to working on strengthening, we need mobility that's more structured for her.  Especially once she starts at school and needs to be upright and have a tray to work off of.  Of course the wheelchair will be for use at home and when both of us are out with the kids- and we'll c'ontinue to use a multiples stroller when I'm out with the kids simply because it'd be impossible for me to push a wheelchair and a double stroller at the same time! LOL

 

WheresMyAngels said... Meridith, you have a good list going, another suggestion I would have is to have wheels that can go thru gravel well. I swear I encounter so many places with gravel and have a hard time moving a stroller or wheelchair thru it.  Great news on the doctors.

That's funny you said this, because I was thinking "it needs to go through sand too" since we live in FL and any park we go to is pretty much all sand... then I figured I was getting too picky :)  Ideally, though, it'll go through loose terrain pretty decent to make our lives easier!

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Today's ped appt for Micah and Emma

Lots of neat thing for both kids today! This was the first "proactive" ped appointment we've had for Emma... the past several since coming home have been more survival based. It is a MUCH WELCOME CHANGE!!!

First, let me tell about Micah though :) He has officially DOUBLED his weight and put on about 1.25" in lengh! He's now 22lbs 4 oz and 28" long. He came home in 3-6 months clothes and almost 6 months later he's in 18 and 24 months clothes! What a HEALTHY looking kid we have now, I'm so happy for his accomplishments! Also, I asked about what to do about Micah being on soy and if we could take him off of the formula. That was met with a big happy YES and we are going to go ahead and try to do regular milk with him. We'll do it for a week, see what kind of response we have as far as BM's and reflux, and we'll go from there (unless, of course, it's obvious in less time that he cannot handle it). It's possible that now that his system is "stable" he will do just fine with dairy. We shall see!! If need be we'll move to soy milk, which is what our ped has recommended as an alternate to the regular milk. We did get a new script for Micah's Zantac script for his tummy. He's good to go!

Emma is slowly but surely putting on weight. She is 21lbs 12 oz now and is 33" long! She was 17lbs and 31" when she came home almost 6 months ago. We're going to meet with a nutritionist... sometime... and get some advice on how to best adapt her diet to get in about 150% of the current calories she wants to take in. We also got a script as our first step to getting a wheelchair for Emma. If anyone has any ideas or advice on going through the process to get her some wheels or even what a good wheelchair might be for her, I'll make a list below of what we know her current needs are. I also got our homebound paperwork signed, and the ped agreed she needs homebound services at least until December, and maybe through flu season as well. If she was to catch a cold even right now it could put her at risk simply due to weight loss, but something more serious could cause a more dramatic decline. We'll all be getting flu shots this year and the ped suggested Synagis for Emma, but we're pretty sure insurance won't cover it because she's over 2 yrs old. Synagis is a vaccine to prevent RSV, one of the the primary causes of death in premature and high risk infants, and also a leading cause of hospitalization for children under 2 yrs old. We have Emma's IEP next Tuesday, and I don't know how soon after we'll get her started, but at least we're getting that ball rolling! The school is aware she'll be needing homebound and said they're prepared to set that up for her. More on the IEP and questions there later :)

I love leaving the doctor's office with the feeling of "yay, let's get going and doing and moving" and not "let's preserve things until next time." And... I like going when no one's sick and we're just dealing with all the great things the kids are learning and doing and not sickness or other health concerns. If only they were all that way!!

Ok, here's what we need in the way of support for Emma, or at least this is what I understand her needs to be:
Head support
Trunk support
5-pt or harness belt for upper body control
tilt in space or recline option with option for 85-90 degree seating
tray
folding or collapsible without too much of a process
not sure about the need for one equipped with tie-downs yet

Brianna's new skill

Brianna has been slowly getting used to the idea of toilet training. Over the past year she has been fairly good about telling us when she needs to have a BM just through a chess and check method. When she's complaining of something, we ask a few questions. Do you want to eat? Do you want milk? Do you need help with something? Do you want to play? Does something hurt? Do you need to go potty? She answers with signs and yes/no pretty well. We're still working on "Tell me what you need" and getting her to reply with the appropriate sign, but hey, at least she does tell us what she needs this way. And for now it works for the most part.

Except when she's going down for a nap.

When she's in her bed she'll fuss or cry and sometimes it's because she wants something- a drink or to go potty are the most common- but most of the time it's because she doesn't want to go to sleep. Over the past year I can only think of maybe twice that Brianna's had a BM in her diaper when she was able to get to the toilet, but another dozen and more times that she's gone in her diaper at nap time-- after crying when we didn't recognize there was anything wrong other than not wanting to go to sleep.

When I take Brianna to the potty I've been showing her and having her help take her shorts down and take off her diaper. We do this at bath time too so she can learn to undress and dress herself- though obviously not putting a diaper back on by herself :) She's learning to do it and doing well. But she hasn't grasped doing any of the steps without some guidance.

Yesterday when I put her in bed she fussed around, but was going down for nap late so we figured that was the case. Then she went to sleep and when she woke up she played quietly for quite some time. And when I went in to get her I discovered she's accomplished a new skill. She can now take her diaper off. She wasn't wearing pants- had a dress on for church- so it was pretty easily accessible. Unfortunately, her attempts to throw it out of the crib (along with everything else she had in there- dolls and her lovey blanket) also left the entire room sprinkled with small lumps of POOP.

I promised my kids not to post anything I'd completely embarrass them with, so the potty story stops there... but wow....

A new skill, aren't we proud??

Q&A

ejlennox said... Sorry, I had already voted for someone else. :-(
But here's another idea in case Andrea doesn't win. Why not see who'd donate to a Laptop Fund for her? If a stroller can be funded, certainly a laptop could be as well?

 

I know there's lots of other worthy people on that list.  I've read through every one of them- many before I nominated Andrea.  Thanks for the other idea too :)

 

 

Anonymous said... ok, well they didn't say it how I'll say it, but they had a lot of questions as to our integrity, my reason for blogging, and how we would take care of our family if other people weren't helping in so many ways.  Oh, and they commented on us probably getting "state help" as well since the kids are disabled...

I deleted that comment because it was drawing a response from other comments and a second comment had already been left in the same post.  I don't appreciate those "conversations" in my comments- especially when people feel they have to defend me (which, those of you that did, thank you).  The comments by this anonymous poster were rude and the language uncalled for.  That said... they had questions which I'll happily answer.  First off, my blogging is to allow people to be a part of our lives and that of our children.  To keep our family and friends around the country in the know with what's happening down here.  It is to let the many that followed Emma's/Daria's story continue to see her grow.  It's to ask questions when I have them and find companionship in the struggles.  It's not to ask for anything.  And why do I post the things that are gifted to me?  As another way to say THANK YOU for those that go out of their way to do something kind for others.  As for how we would care for our family without these gifts?  We are capable of this, through Christ and only through Him.  Just as we're capable of anything else.  I will give you a whole post on that... another day.  And lastly, no, we don't get any "state help."  Which I assume you mean SSI or something like that, state subsidies, food stamps, WIC, whatever.  The answer is no.  We have tried getting medicaid and it seems that by the time we make it through the process, all of our insurance maximums will be met and Medicaid will not have to pay out a dime.

 

Hite Family said... I hope u do get your house sold Meredith, If I lived down there Id be happy to move in, It looks Gorgeous!!  I actually want to see pics of your new house :) From the pics you post it looks Beautiful!

 

I'll post some of our new house sometime... I grew up in this house and I love love love it!  Of course it's not exactly decorated except the little touches my sister made while I was overseas, but it's very functional for our family and there's not a thing I would change :)  We really feel blessed to have it!

 

On the subject of the Ukrainian documents... I have one person I'm sending the article to and another 3 that have offered.  THANK YOU!!

Christine said... Thanks for sharing Meredith. I would be interested in adding all of the donation buttons to bring kids home and if you would email me, I would please appreciate a favor from you. :) Pretty please?

 

I sent you a button... did you ever get it?  It hasn't been posted yet, just checking!  (And for everyone else, check out the cute little Dennis on the Smiles & Trials button on my sidebar to go to Christine's blog, and hold their family up in prayer as they begin a long medical process with their newest little man!  (the "grab this button" link won't work until she posts it, but the button itself works!)

 

Faith said... I'm curious about Emma's sweating. Did it continue after the surgery? Also at one point you posted about her large amount of..um..snot. I was just wondering if that cleared up after her T&A and/or open heart. I'd be interested in a post (if you don't mind) of Emma: before and after. Perhaps it is not after enough yet. She just seems to be doing so well I was wondering how her other symptoms were. (I ask because as a NICU nurse I often see babies with cardiac defects before the surgery but not after. We do not post-op cardiac children in my unit.)

Emma doesn't sweat nearly as much as she did pre-op.  She does still sweat more than my other kids though.  Micah sweats a lot just because he's a hot-natured kid, so I'm not sure what's what exactly.  The difference between the two of them is Emma will sweat when crying or drinking and Micah just when he's warm or really active.  Brianna sweat profusely before surgery and now 2 1/2 years later (even living in FL) she doesn't sweat very much even when it's hot out. 

 

narretto said... praying for your safety....again, will life ever get boring?? doesn't look lilke it does it? LOL

No, life will never REALLY be boring in my house just because I have 4 kiddos :)  But... I do hope we can avoid any more major incidents and I can post about how cute the kids are and the new things they're doing instead of all the icky stuff LOL

 

Faith said... I went over and nominated. I couldn't find any rules on the site. (I'm also in a hurry and didn't really look that long at their slow (cross through) wonderful site.) Are there any rules about voting multiple times...perhaps once a day or something?
I hope your rainy day is getting better! (Referring to the Member's Project)

Each person can only vote once for each project on e-mail address they have.  Thanks for nominating RR!

 

mom 2 many said... would you mind sharing how you make the food? My daughter 2.5 years has a hard time with foods, so I still give her some baby food. I am only spending about $10 a week, but you know...it adds up!  Thanks....Carla

I cheat :)  I use most of the fruit fresh, though I boil the apples just to soften them up a bit.  And I steam most of the veggies (boil the potatoes).   Then I put each on into the blender with a little water- depending on the consistency of the fruit/veggie and I pour them into baby food jars that have gone through the dishwasher.  We label them with masking tape and put the date on there with the food name.  Not too bad!  I did buy a new blender a few months back that works SO MUCH better than the "baby food processor" that I had.  The other made it soft, this makes it "drinkable" which is what we needed.  It took about 2 1/2 hrs to make a week of food for 2 kiddos!  That was with a little help from Mike with the labeling :)  This next time I had to buy some frozen foods because there just wasn't enough "good" fruits at the grocery this week.  It's still less expensive than pre-jarred food and pretty good for them too!

 

Tanya, Sky's Mom said...Hey Mer-- I so remember doing this for my twins. It was a huge time saver & they really liked it well. We cooked, cooled & poured into ice cube trays. then I popped the frozen cubes out into individual labeled freezer bags & reheated in their favorite combinations. For bigger servings, freeze in muffin cup tray. It's so easy! Another good tip is to use a steamer basket, rather than boiling your veggies, as you loose more nutrients in boiling. => Wish I were there to lend a hand-- I know we'd have fun.

Great idea with the ice cube trays and muffin tins!  I'll have to try that next time if I can make enough to go that far :)  And I'd love to be close by so our 8 kids could get into trouble together!  Wouldn't that be fun???

 

Christine said... I can so relate to making baby food. I do it too, but day by day. For quickies, I will puree Veg-all. It tastes good and is cheaper than jar food. Another thing is I make a big pot of Borscht and then freeze it in Dennis size portions. It has beef broth and tons of veggies in it making it ideal meal for him. When it is time to eat, I just microwave it and then puree it. It is so easy.

Thanks for the tip!  Actually, this comment is what made me think of frozen fruits when the grocery didn't have enough :)  I haven't actually ever MADE Borscht... and I'm not sure we'd EAT it... but I did try it in Ukraine and it wasn't so bad!! :) :)

 

Shari said... These babies are beautiful. Oh, how I wish I could adopt right now. I know it's a process. Love the letter you wrote. Also, do you have any updates on little Preston?

No, I don't!  His parents did e-mail me and gave me a blog address they'd started for him, but they've not posted except an initial introduction and I haven't heard back from them yet to hear whether I can share their blog publicly...

 

Qadoshyah said... Another idea for instead of formula or milk, would be goats milk. My brother w/ DS can't drink any cow's milk or have any dairy products from cow's milk, but he can have anything from goats milk. We have milk goats specifically for that and it has been a great benefit for him ;).

 

Interesting!  We go on Monday, I wonder what the doctor would say if I asked about getting a medical permit to allow us to have a goat??? :) :)

 

June Berger said... Hey Meredith, got a little extra energy to send this way? I need to get so much done before Anah comes home, but just the day to day stuff is getting behind...ARG! I need to declutter too, maybe I'll "book" next week to start! Thanks for the prodding!

 

Glad I could help LOL.  My energy?  Um... Sam's Choice Cola :)  It's definitely not from sleep! LOL

 

Shelley said... Want me to get my hubby to make you one????? (in reference to my broken zipper on the diaper bag... which is no longer being sold at Wal-Mart :( )

 

Sounds good! LOL  Think he can make it to all those specifications and also wipe-able and smell like flowers all the time???

 

Thanks for all the great suggestions for a diaper bag!! I'm slowly looking at all the sites listed and in the mean time I'm carrying the one with a broken zipper :)

Christine said... How awesome! How old is she again? (in reference to Brianna's first steps)

 

Brianna is 2 years, 7 months old :)  And we're even more proud of this accomplishment because of how long and hard she worked to get here!!

 

"Brianna's Story"

Newborn


2 months


6 months old, just home from open heart surgery


10 months old


11 months



First Birthday!

On one of the Down syndrome boards I frequent a new mom just joined that had a "late diagnosis" of Down syndrome and wanted to hear from others with similar situations. Brianna was diagnosed at 2 months old. I wrote up "Brianna's Story" to share with the mom there (her son was a similar age) and thought I'd share it here as well.

Brianna is my biological daughter and at 5 weeks the doctors suspected something might be "up" with Brianna. She was 5lbs 2 oz at birth at 38 weeks and was born via emergency c-section because her HR was dropping during simple pre-labor contractions. She was diagnosed with "probable intra uterine growth restriction" (IUGR). Well, all that was passed off once she was born because her umbilical cord was only about 6" long, was hard, and was thin. An unusual umbilical cord would cause lack of growth and possibly HR declines during any labor... we were sent home early, 48 hrs after a c-section (normal here is 72 hrs).

Anyway, at 5 weeks she wasn't growing very much in weight or stature. Her only "symptom" other than that which led them to do a chromosomal analysis was that she had just a little bit of a 'fat pad' behind her neck. This is generally related to something chromosomal. They were thinking Turner's syndrome (female with a single X instead of XX) because of the lack of growth and no other symptoms. The ped admitted to me that he'd been standing over his medical books the day Brianna was born and watching her and going through the different things and found nothing that would explain her birth situation other than just the IUGR, but his concerns for her health didn't just go away.

So... they ran the chromosome analysis and the day before the results came back Brianna got a little cold. Kristopher was going in for his 2 yr checkup and I got the dr to just listen to Brianna's chest to make sure there wasn't any fluid since she was so very tiny. He told me the next day that he heart a heart murmur that wasn't audible before that- but that he didn't want to have me have one more thing on my plate when he knew the other test result would be in very soon.

The next day we were called in for a consult of the test results and he took Brianna and looked her over really good then gave her back to me and I'll never forget that feeling of knowing that he was going to tell us that Brianna had Turner Syndrome. "Well, we have a problem with Brianna. She has Down Syndrome." Mike and I smiled at each other. The ped said he was amazed and if he hadn't seen the test results he wouldn't believe it because of her lack of symptoms (which, as she gets older, are more prominent, but that tiny really weren't!).

I remembered then that when Brianna was newborn in the hospital I'd said that she did this funny little thing with her tongue, and it reminded me of my friend with Ds. I'd said it to my mom, my husband, my best friend... but she was so tiny and it seemed so insignificant, well... I never said it to the doctor! Anyway, I guess that was our "little sign" that she had Ds and we just didn't know it.

At the end of our visit with him after we'd talked about Ds he said that he'd heard a murmur yesterday and sent us straight to the hospital for an echo. That freaked us out more than anything else and we found out she has an AV Canal which needed repair in just a few months.

There initially was that feeling of "my baby girl is going to be...." when she was born and having to readjust after such a long time was difficult. After already growing dreams for her future that I didn't even realize I had... I had a definite period of grief over the diagnosis- more for her than for me. All the things I was so sad that she wouldn't, couldn't, do. I was sad for her not marrying, for not having grand children from her.

I'm only 2 1/2 years down the road from there, but I can tell you that I'm no longer sad for those things. First off, she might do some of them! And second off, she's shown me the things that she CAN do and she's fought hard to do them. Like taking her first steps last week and feeding herself independently.

In fact, when she was about 18 months old we decided that she has provided so much joy and fulfillment to us that we want to do this again... and again... with other children that aren't lined up in life to have the same opportunities that she has. We adopted Emma and Micah from Ukraine in March and both have Down syndrome. Emma had open heart surgery 3 weeks ago and is doing great now. Micah has doubled his weight and is now an active toddler learning to stand up and right now just fell asleep on my arm while I'm typing.

The journey's a little different than the one we thought we were headed on, but it's still a good one!