Friday, July 31
But here's one that I wanted to share :)
When we said we wanted to adopt another child with Down syndrome (yes, at that time it was intended to be A child... singular), we heard a LOT of comments. A few were "of course" and "I've always pictured something like that for you" but most of them were more along the lines of "this is going to take so much away from your other two kids" and "Brianna's still little, you don't know what you're getting in to when the kids get older" and the kicker... "what are you doing to Kristopher to give him 2 disabled siblings?"
Well, let me share a few little stories :)
Brianna says one word about 500,000 times every day (yes, she does say other words tho!)... It's the first out of her mouth in the morning, it's her concern all day long, her joy, her sadness, and her frustration :) It's the last word she says as she goes to bed at night and if she wakes up in the night it's often the word she asks for.
Emma is her best friend, the person she steals toys from and who steals them back, the one who will let her rub her hair and snuggle, and the one that kicks at her when she's not looking. Emma might not appreciate Brianna QUITE as much, but she also doesn't show nearly as much preference for anyone as the other 3 kids do right now.
In addition to now having a best buddy, Brianna is still learning and growing and loving her mom and dad and brothers and sister. Her second favorite word, said in a whining tone as she follows on the heels of the suject of her attention... This one word that means she can be translated and understood...
And I always seem to be there. She's my momma's girl, loves to be held, to snuggle on the couch, to be by my side when I'm cooking or putting away laundry... Yes, she's a momma's girl.
Even just now, Brianna, Kristopher, and Micah are playing with these big magnetic balls and sticks (Magnetix for preschoolers) and she's calling out MOMMY as she hollers at Micah for taking her ball :) Those two are very close too! Yes, he takes her stuff, and lately he's done that a LOT... but she still shares with him and claps for him and cheers for him and praises every good thing he does. Then she yells at him for taking her stuff. And by the way, after being told once to turn the magnetic stick around so it would stick to the next one... and being shown how to do it, she has figured out how to match the poles so that they will all stick to one another. Smart little cookie.
Micah... yep, he's trouble! He is proving he's almost 3! I always thought 3 was harder than 2. And it's proven true with my kiddo w/ Ds just as much as my 'typical' son! And no doubt Micah's experience as a 3 yr old will be trying as well :) He wants to be praised, but trouble is so alluring! He loves to climb, he loves to play, to hang, slide, swing... he's a HAPPY kid. ALWAYS smiling! He just wants everything that anyone else has :) Oh, and... he licks. Everything.
At Sea World on Saturday we put all the kids on the floor of an aquarium area where the floor is glass and the fish swim beneath you. You got it... he wanted to crawl around on his belly and lick the floor. And I thought it grossed me out pretty good at the HOUSE... try a theme park...
Regardless, he's a sweet boy with a smile and a hug and some kisses for everyone! And a daredevil spirit too!
And Kristopher, the big boy of the house... He's his own share of trouble, that's for sure. Part of it is that he's older and he's trying to figure out his own independence and what he can do and not do. Part of it is he likes to test boundaries and is very good at it! But even this morning when we got out of the van after going to Target, Kristopher took my keys and unlocked the house for us. Then he brought the bag I'd asked him to take inside in... and he came back out. He asked if he could help take something else for me. I had Emma on my hip, two Target bags and a Frapp from Starbucks in my hand, and was holding Micah's hand with my other hand as I walked up to the house. He has a sweet spirit and a bold desire to please.
He also has a general idea that right now since he's a lot bigger than the other kids... he must also be able to 'parent' them. Which isn't ok! Just 2 minutes after he helped me get everything in the house, I asked where he'd put my drink down. When he went to retrieve it he came back through the kitchen and decided Micah was doing something he didn't want him to do. So rather than finish bringing the drink that next 10 feet to me, he bent over, pulled on Micah and told him to stop, and promptly spilled my Frapp all over the floor. He also had stopped and picked up his new kitty stuffed animal and the frapp was on that too.
I think the cat actually helped him learn a lesson. He knows he's not supposed to boss the other kids around and he can tell Dad or I about an issue- but WE will take care of it... but for some reason when he took things into his own hands and his beloved cat got a little strawberry and cream bath, he actually thought about what he was doing.
It's all a learning process- for ALL of us! Right now Kristopher is spinning around on the floor holding Micah's hands as they make themselves unbelievably dizzy (no sharp corners or really ANYTHING around, no worries!) and Brianna is spinning next to them as all 3 of them giggle away. This has been going on since the magnets were placed on the couch (away from Micah's prying hands) for safe keeping. I told them no more porch (playroom) time today and they're doing great playing together (Emma's still working on her drink from dinner). Three little laughing spinning bodies- Kristopher leading the bunch and enjoying being the 'big guy' that everyone wants to follow!
Emma- well I posted about her once today, but even as the others are laughing and spinning (something she can't participate in yet even if she wasn't finishing up dinner), she is at the table flailing her arms and smiling, happy with the laughter from the other kids and enjoying watching them.
Emma's such a different personality from the other 3 kids, but really each of them are so different- and EVERY child- that we don't usually pick her out as being all that different. No, she doesn't walk. Or talk. Or spin. Or follow directions most of the time. She doesn't play with other people in the way a person might expect. She doesn't smile and laugh and engage with everyone. BUT she is the first to attack Dad when he lays on the floor (and I gave up laying on the floor a few months ago ;) ). She climbs and laughs and climbs and laughs. He throws her around just like the other kids, and she loves every minute of it.
Emma is the quiet one when it's bed time, unless she's giggling to herself in the darkness! She's a quite one when she wakes up... unless Micah's laughing and giggling, then she'll respond to his sounds. Emma is the one that will go play by herself with a musical toy for HOURS if you let her and would be just as entertained with a frisbee or a round play kitchen plate as she is with an expensive toy. Emma will come and STAND by me at the couch then snuggle in against my protruding belly with her ear against my chest and just listen to my heart beat and be still for the longest time. She'll hold on tight with her arms in a gentle hug when you hold her and will scoot up to almost everyone to say 'hi, hold me now' with her arms extended.
So, you see... each of our kids is so different from another. Some have more challenges to overcome in their own lives, and some bring more challenges to ours :) But each of them we are blessed to call son or daughter, and having their siblings brings JOY to each of them every day.
Our adopted children... our kids with disabilities... the little ones that God has placed in our family... have all been placed here for a purpose. And none of them- not a single one- could step out of our family unit without being deeply and sorely missed by ALL of the family. None of our kids are worse off for their siblings. None of them are lacking for attention, or love, or care, or anything else. They are each perfectly formed to fit together into the unit that God calls FAMILY. He put us together. And it's in His plan and purpose that these specific children are in our home for us to play a role in their lives.
This photo may not seem significant, but there are TWO wonderful things that it represents! Well... four I suppose. The first two would be the sweet brother and sister in the photo as they finish up their lunches :)
Notice what Emma's drinking from? It has a HARD SPOUT! YAY! Emma has been drinking from a straw for a little while now, but only disposable, small, bendy straws like the ones in juice boxes or those you buy in packs of 100+ at the grocery store (the thinnest ones you can get). We've tried to get her to drink a McDonald's straw or one like that, and if they're thin enough, she sometimes gets the idea that she can drink from them without the 'bend' in them. I've been trying to find any kind of reusable container that seals that I can send her drinks to school in. She can't seem to get a hang of the ones with valves, but after I squeezed this one up a time of two... She did it!
See that gorgeous smile and twinkle in her eyes in the photo above? That's the second significant thing about today's accomplishment. Of course I jumped up and down and clapped and praised her when she started to drink from this container (um... ok, minus the jumping part! lol) BUT THIS... this SMILE and JOY that she's showing from the praise... It is true and absolute UNDERSTANDING that she has done something good! And she kept on drinking!
To have a child that responds to you in very slight ways and sometimes a bit randomly... to have that child hear you praise her and SMILE and KEEP GOING is such a great feeling!!
Not a fluke either, because when that juice was empty, she smiled again for the praise I gave her. What a sweet girl.
And just in time for school!
Thursday, July 30
Wash even a single load of laundry
Put away the clothes that have been in a laundry basket for a week by the kids' bedroom door
Finish cleaning the older kids' room
Wash the tile in my shower
Change the kids sheets- which I just NOW realized, since I'm writing this list, and Emma woke up with a wet diaper up her back... so I guess she's getting another bath in the morning and THEN clean sheets. They were dry, they didn't smell... what can I say?? Other than thank God for waterproof mattress pads... And yes, all the kids are already asleep. I don't dare wake them up to change sheets!
Vacuum any room- and there are a few that need it
Clean the drinks that are spilled in my car- did I mention that a few days ago someone got in my van overnight and stole all the change out of my change jar? Probably only $4-6, but they also trashed the car, spilling the remainders of a chocolate milk 'juice box' that had been left there all over my console. Thankfully it doesn't smell bad, but it's gross. And... thankfully they didn't take my Handicapped tag, the second screen to my DVD player (player is in Mike's car now tho), the kids' PASSPORTS which had been taken out of their documents file the previous day and I forgot they were left in the car, my phone charger... Really they ONLY took change! And they even left the pennies (scattered around the van and concrete... a choking hazard but still...)
Cook a meal. Unless heating quesadillas stove-top counts... maybe...
What I DID do today...
Changed one SOPPING wet little girl and gave an immediate shower
Changed one STINKY poopy boy and gave him a nice long SOAKING bath
Changed one more little girl that thankfully doesn't get any strong descriptors on her diaper, and gave her a quick bath
Fed 4 children breakfast
Got out clothes for said 4 children and left them out while I grabbed a shower (mom dressed the 3 of them that don't do it alone)
Went to 2 elementary schools to get out-of-area paperwork signed for K to attend the same school as the other kids (hence my mom being there!)
"Made" lunch- PBJ
Put 2 kids down for naps
Laughed when one little person proudly came back out of her room to announce she was 'done' about 5 minutes later (still not sure how she got out of bed) and plopped herself in a bean bag to watch the rest time movie...
Laid down in the recliner and watched the kids play, watch Elmo, play, and play some more.
Called my sister to wish her a Happy 30th Birthday
"Made" dinner- quesadillas and assorted other 'stuff' lol
Got 4 kids into PJ's, teeth brushed, meds given, and off to bed...
Took a nice long bubble bath and read a book in the tub (oh wait, that didn't actually happen, but it sounds good!
Wednesday, July 29
So, not only was I already frustrated with the lack of actual care from the previous ortho, but I've heard a lot of good things about this new doctor from our PT and decided that was what our next step would be. It took a while to get in for an appointment and Mike had to take E for x-rays a week or so ago so they'd be ready before the appointment (obviously I'm little help as far as x-rays go at the moment...).
I can honestly say we were not disappointed. The doctor was a very 'straight talker', didn't dance around anything. He answered all of our questions (our PT went with me), made his recommendations for her, and gave us a good reason for each of the answers he gave.
His suggestion as far as her dislocating her knee, popping her foot and toe joints, her hips becoming dislocated, her knees hyperextending: do nothing. Seriously! He said that according to the x-rays her joints are not being damaged as would a child without the laxicity in their ligaments and hers slip so easily in and out that there's really no rubbing. Her posture is stable without bracing anything except her ankles and some light support on her left knee.
He asked what our goal was for PT, and in all honesty our PT and I were both taken aback a bit by his boldness on this. He said "I'm not sure what the role of PT is at this point." Um... he obviously didn't quite 'get' where Emma started and where she is now. Yes, I realize that the things we're doing in PT are all things I can do at home. And I do. But... I also participate in all of her PT sessions and together we talk through the next set of goals, how to work on them, etc. She's gone from not even holding her head up or sitting to pulling to a stand and cruising in just under a year. She started PT last fall around October/November time period once her heart was healed up. For our goal... I said that although of course walking would be wonderful, reality is that functional upright mobility is more the goal for now. Getting around in some way that's not on the floor. Using a walker, gait trainer, whatever-- but being able to be upright in her environment to get around with functionality. We're definitely getting there. It's still a ways out though.
So... yes, we'll keep PT. And he wrote us scripts for AFO's that go higher up the leg than the sure step since she's starting to pronate over TOP of the sure steps... (which we can't exactly fill right now because insurance won't cover it this calendar year and it would cost over $900 to do...). So in the near future we'll be looking at figuring out how to get those. Whether we do the ones he prescribed or whether we do another that we can order outside insurance through Cascade online that's just a fraction of the cost.
He also said there's no obvious bone fragility or history of multiple breaks that still show. This is great! I've been concerned that she wouldn't even show that she had broken a bone and the way she falls often really makes us wonder... so she ha good strong bones now and apparently a lack of calcium is 'easily overcome' once a good healthy diet is in place, so being home for 17 months has paid off ;)
He really isn't concerned about the future of her joints- which we're very glad about! He does want to see her back in a year for another xray set for scoliosis. He said her back looks good right now, but often after heart surgery has been done that (here's where he lost me) something in the chest bone tethers, and as the child grows the back begins to twist the back and may need to be untethered. I'd never heard of this, but if it's a concern, we'll check on it ag ain in a year. Who knows...
So, I'm actually really pleased with the visit. We've already stopped using the bulky knee braces about a month or two ago- they just weren't functional for the level of movement she needed and only kept her knee from hyperextending. We've just been using an 'elbow brace' on her knee (the Ace type) which helps with just enough stability to help her stand without hyperextending the knee.
One more appointment down!
Monday, July 27
Anyway, those are a few and of course there are some things that just aren't 'public' to share. But we would all really appreciate prayers for guidance in the days ahead, health for everyone, and just the ability to go through each day and accomplish not just the necessary things on the 'to do list' but also spend good time together as a family and ENJOY one another.
This weekend we took the time to do just that. Saturday we went to Sea World for the day. Everyone had a great time. I have a few pictures, but posting here has had to take a backseat to other things and will continue to do so until a time where I feel comfortable taking that 'time out' from other things to put together posts. No worries, we'll not fall of the planet, but other priorities are important! Then on Sunday after church Mike and I, K and E went outside and Mike worked on cleaning out his car and vacuuming the trunk of mine (where he'd put a stroller with really sandy wet wheels the other day LOL) and I weeded 2 of the very very needy gardens in the front yard. Brianna and Micah slept through most of it then Bria came outside toward the end.
It was a beautiful weekend- we didn't get any rain on Saturday while at the park but did get some cloud coverage near supper time when we were getting ready to leave the park. We ate lunch on the way there and dinner when we got home. About 5 hours at the park was plenty for this pregnant momma and for the kids that didn't nap much too! And on Sunday it was breezy and cloudy as we waited for the thunderstorms to roll in- which was perfect!
Mike and I have been playing chess in the evenings after the kids go to bed and last night invited his parents over and played 'Are you smarter than a 5th grader' (psst.. I got the $1Million! LOL). Down-time together is so important. For us and the kids as well as just the 2 of us.
Hopefully as some of the stressors in life get closer or are resolved (depending on the situation) things will continue to relax around here. I'm not someone that stresses out easily about things, but having a lot of different things on my plate at the same time can get tiring/overwhelming!
Thanks for following along on our journey... your support and prayers have brought our family far in the past almost-18-months since coming home from Ukraine. I never imagined blogging would become such a way of releasing to me, nor of the support that we would all find through it.
Friday, July 24
On Monday I went to the OB and got the test results from the EKG and the Glucose testing that I had done 2 1/2 weeks prior. Yes, seriously the dr didn't call...
Anyway, EKG was within normal limits which means it either wasn't doing the weird stuff during the 10 second readout... or what it was doing is ok :)
The glucose testing however, showed very low levels. Like... really low. And I guess they also do other bloodwork on that draw because I'm told I'm anemic too. In all honestly, I'm surprised that the glucose testing came back that way. Yes, I think it's right because I've felt better after getting a little sugar each time I feel really bad... but.
They don't do this test fasting anymore (at least not here). So I went after lunch... after a sandwich and a soda. I thought- even if it's low, it won't show because I'll have had this soda AND the drink thingy, and it's a waste of time to do it because they don't ask what you had beforehand and I'm sure that has to affect it... right??
Well, needless to say, even having had a can of caffeine free coke about 20 minutes before drinking the awful orange syrupy stuff... my levels were still really low an hour later.
So... good news is my heart's not the cause of the weird almost-fainting spells, and that there IS another reason... And there's a pretty easy solution. Sugar. I'm to keep some sweet tarts, or starburst, or something like that on me at all times. Studies show these are some of the fastest to make it into the bloodstream whenever I have a 'low'.
Basically, I have gestational hypoglycemia, which is the opposite of gestational diabetes. I'm also taking iron so my anemia can be brought up and maybe I won't be so TIRED... and also will be at less risk of bleeding during the c-section. I'm supposed to eat smaller more frequent meals, and keep sugar around. Not so bad, right?! :)
There ya go.. an update on ME :D
Thursday, July 23
This was the FIRST time that Emma has taken steps while holding on to something without being held or coaxed to do so. She even showed off her cruising skills for her PT on Monday walking along the side of the ball pit!
You never, as a child or a young mother, picture yourself being so excited about a 6 1/2 yr old cruising. But this was one more step toward independent UPRIGHT mobility for our big girl and we are so proud of her!!
Who knows if she'll ever have independent walking as a primary means of transportation, but this shows she has the capability to get around upright within her home and possibly school environment in the future, which is huge :)
Tuesday, July 21
Before assembly. Dad already made a bunch of modifications at their house- which I'll show below- but it's essentially a bunk bed :)
This is the rail that is on the wall-side of the bed, you can only see the other side of it in the photos below.
Frame is up- this is almost all just the 'original' bed.. BUT with some special things! The plate on the front has "Emma Hope Cornish" carved in to it. This is a bunk bed, the kind that has 2 stackable twin beds. But... My dad took the 4 corner posts off the bottom bunk and made 4 new posts, stained to match, that were 8" longer. He also made the single horizontal bar between the two beds. This raised the top bunk 8" so that Mike and I can easily sit down on the bed and get Emma from the far back corner without banging our head or killing our backs :) Also, Dad (and Mom!) made the rail that goes on the side against the wall. This 'fills the gap' between the wall and mattress. It's the entire length of the bed and is removable (you can see the metal brackets holding it on- you just have to lift it to get it off but it's a tight fit). Mom took a large piece of mesh and bound it, then they put two thin strips of wood over the mesh the length of the rail and screwed through that to keep the mesh in place.
Brianna, standing in Micah's crib, watching the men work :)
Emma in her crib- you can see how TALL she is in that crib. She could easily lean over and fall out of it but hasn't figured that out yet! THANK GOD!!
Emma's first time in her new bed! This is with the side 'down' most of the way so it acts just as a crib rail would. It would keep her from falling out while laying down, but not from climbing or falling out when intentionally trying to do so :)
A view from the inside out- with the side up!
And here's the view from the outside... The side is made from canvas and mesh. It's one solid piece of mesh with 4 'pockets' of canvas, and all framed in canvas. The pockets each contain a hollow, lightweight metal pole. On the end away from the wall, there are holes in an extra piece of wood that's attached on the inside of the frame, and the pole has a 'stopper' on it to just get inserted into the hole. The side by the wall (on the right in the photo below) has an extra piece of wood attached the height of the bed as well which has a 'slit' in it for each pole end to be inserted into. Then there's a metal piece that rotates over the pole to keep it in place.
The bed has the ability of having a top bunk, but for airflow reasons we've decided to keep the top bed off since we don't need it right now and we'd need to put an additional fan in the room if we covered the top (we already do this for Brianna in the other room since she's on the bottom bunk there) because we have ceiling fans and the bottom bunks get hot.
Here's some monkeys scaling the bed... no need for a ladder... and yes, Brianna can climb it all! UH OH! (notice Micah getting away on the left... he sees an unattended room he could mess up! That's K and B's room and you can see the end of their bunk beds)
This front piece that secures Emma into the bed can all be removed, and it's just a bunk bed that the top bunk has been raised on. This makes it easier to change the sheets! We can adjust the height of the side by securing more or less poles, but we would probably want to replace whatever the top pole would be with a heavier one so if she pulled to stand on it there would be no question of durability-- right now she can't grab the poles to stand up as long as it's secured all the way up. The lightweight poles do have some give in them, though. These were $1.50 poles vs. the $15 poles... but very simple to replace in the future.
Also, the top pole and the one that's 1-up from the bottom both have a screw on either end holding the canvas to the metal pole so that it doesn't slide. Just by removing those 4 screws we can remove the 4 poles and wash the entire side piece.
So... there you have it! My dad has said he'd be happy to share the plans with anyone if there are others that would like to build their own. The bed started at $500, the mesh was approximately $50, the lumber and screws and such another $100 or $150. All together, roughly $700 and a LOT of man (and woman!) hours. The mattress was one we already had.
One more thing... I've been asked why we didn't just do a mattress on the floor for now for Emma or leave her in the crib longer. The crib is an easy answer. She's 6 1/2! She's 3' tall! She's maxing out the crib's size limits and doesn't have the ability to move around very freely... as well as banging her head on the side rail which is not just annoying, but can't be good for her head either.
The mattress on the floor... well, she gave us a very good demonstration of what she would do if given a mattress on the floor right after she tried out her new bed. We set her on the floor in her room and she immediately laid on her back and went UNDER Micah's crib. Then got stuck. Emma has no sense of danger, fear, and she has not begun to understand that because you say not to do something once, it means she shouldn't do it at ALL. This is not even CLOSE to being understood! So for her safety as well as the other kids' safety- with her being 'loose' in the room and grabbing them through the crib rails, etc... we knew she needed to continue to have boundaries in where she can be, especially unsupervised at night.
There you go... the long awaited adaptive bed for right around $700!!
Sunday, July 19
In other news, we decided tonight we needed some family time since, considering the hours I put in on that project... I haven't had much of that this weekend. So off we went to Sea World. For about $20 we were planning to drive over, see a few animals, go to the 'late' show (8pm! past the kids' bedtime!!) and then come back home. A great outing for just a few hours. I packed up the kids' PJs, drinks, and diaper bag, we drove through McD's for dinner on our way to Orlando, and wouldn't you know that AS we arrived at Sea World the massive thunderstorms started.
Thankfully we hadn't told the kids WHERE we were going, and they were excited about just the McD's part (even tho we didn't get Happy Meals). We decided to go to Friendly's for ice cream and head back home. We still spent the $20 but instead of paying for parking, we bought ice cream. Ah... well... another night I suppose. We could even go after Mike gets off work one night if the park is open late during the week and there's not supposed to be rain. We really did think the outlook was good for tonight. Lesson learned.
We still got in some family time and the kids were just as excited about ice cream (though try to explain the 45 minute drive for ice cream... I guess it's good the kids don't understand time that well yet! LOL).
We also got Emma's NEW BED today and as I write this she's sleeping soundly, safe, in her brand new twin size bunk bed. What a big girl! Pictures to come... I know several were curious about what the final design might be like. Though we just got it all put together and are using it for the first time tonight, I'm already VERY pleased with how it turned out and I think that a minor adjustment here and there might be found in the coming weeks/months, but overall it's a great plan to keep Emma safe, provide maximum airflow and visibility, have great ease-of-use, and have the ability to grow with her if she no longer needs as high a level of 'protection' in the future. A whole new post on that with photos and descriptions will be coming in the next few days :)
Tomorrow morning is my OB appointment, so hopefully I'll hear the results of the EKG and glucose testing that I had done 2 weeks ago. I don't expect to hear any surprises (I think they probably would have called me if there had been an issue) but it will be good to hear that there's not anything going on. Kristopher's going to come with me to hear the baby's heartbeat and 'help' the doctor :) When my little visitor was with me he came to 2 appointments with me. My OB offered for him to help but he really wasn't interested and hung out in the stroller (which was fine, easier than chasing him down the halls LOL).
Mike's taking Brianna to her follow-up with the ENT tomorrow because it's at the same time as my OB appointment. I hate for him to have to take off work, but it's good for him to be involved with the kids' care and to do a doctor's appointment on occasion! Brianna's doing great, she seems to have bounced back pretty well since surgery but is still a bit more whiney and is definitely about 200% MORE clinging to Mommy since her surgery. Yikes. But I do love her snuggles :) Could do without the following me around wanting to be held and saying 'maaaammaaaaa' with a little sad sob after it and pouting on the floor... oh well...
Mike's taking Emma to a LONG series of x-rays next week too simply because I can't be in the room for x-rays and we don't want her to be scared without one of us there. There will be two sets of x-rays, each said to take about 45 minutes to do. Basically she'll have everything from the neck to her toes done. We'll see the orthopedic doctor the following week and hopefully be able to address a lot of the concerns that we have had brought to us such as leg length difference, hip dislocation, knee dislocation, ankle pronation, foot/ankle asymmetrical bone placement, rotation of the lower leg bone (tibial torsion), and he wants to see her back for scoliosis screening as well. Hmm... her arms might not be x-rayed :) But that and her head are about it. Our PT will be joining us for this visit if she can because she's really curious to hear what he has to say as well... she's been working with Emma for almost a year now but has seen her development since we came home because she works with our other 2 kids (Brianna now aged out of her program tho) as well.
And, just for kicks, Emma's next cardio exam will be the day after her ortho visit- so two big office visits in 2 days. We'll have a thorough echo done, the first complete one in 6 months, and we'll hear whether they plan to do another cath to check pulmonary hypertension levels or whether we'll continue to monitor it as we have with echos. She's also been 'upped' in her blood pressure meds since the last visit but there's hopes of coming off of them. We'll see whether that's a viable option for her.
Now... here's hoping that tomorrow morning my project will be turned back on so I can finish it and release it sometime tomorrow or Tuesday!
Off to bed...
Saturday, July 18
I've been working since Wednesday on a project... here and there... but it has consumed my weekend (we planned it that way). I spent about 6 hours on it Thursday, 14 yesterday, and I'm already past 13 today. More to do tomorrow, but MONDAY is the big reveal!
Coming soon... don't you just love surprises??
Tuesday, July 14
I can't believe it's been eight years since we said our vows to each other. I cannot imagine being happier doing any single thing differently in the last 8 years... When we were talking to people before getting married I remember hearing several times "you both will continue to grow- and it has to be your decision to grow together and not apart." I think we've done just that... And you've helped me become the person that I am today.
We've now been through the purchase of 3 homes and 3 cars, (yes, and the sale of a few of each too), you've made me a mother 4 (ah, well... 5) times, you've sat by my side as we prepared to hand our children over for surgeries eight times, and you've sat by me as we waited to hear the results each time. We've run 4 different youth ministries and worked too many youth camps and weekend outreach camps for me to remember right now. We've visited many different states and even a foreign country together, and spent many days in blissful joy and excruciating pain together. We've laughed together, loved one another, cried together, and most of all, prayed together.
I'm blessed that you chose me to spend our lifetime together, and I'm so thankful to God that He works all things out for the better of His Kingdom. I'm thankful that we can both look to Him and know that there's still more for our lives together and He's not through with any of us yet!
I love you, Happy 8th Anniversary Michael!
Sunday, July 12
Micah does this more so to hear the noise. But the pain doesn't bother him at all. He'll lay down on the floor to get dressed or a diaper change (if someone else is using the changing table) and he'll pick his head up and hit it on the ground a few times. Just for fun. But he will stop when told to, usually, and doesn't do it too excessively.
A few days ago I had a friend over for the day and I put Micah in his crib only to hear banging. I thought it was him kicking the wall through the slats, but went in to find that it was his head. And he was banging it HARD. I stopped him, laid him down, only to hear him start back up a few minutes later. His crib is no longer against the wall. He had a knot on his head after nap that day.
Thankfully, once Micah is asleep he stays asleep for the most part. He doesn't really wake and need attention during the night and I'm VERY thankful for that! Even if he does wake he'll fuss a second and get comfy and go back to sleep. He's a mobile sleeper- all over the crib- and it's sometimes funny to see the positions he gets himself in to. He has a Boppy he'll curl up on or lay his head in or even sit in the center of it and fall asleep on the top of it (sitting up). Anyway, he plays when he's going to sleep but then he's done, he's out, he's quiet for the night.
Emma, on the other hand, is an entirely different story. Yes, she too will bang her head on things for fun. The sliding glass doors that go out to the playroom for example. Or she'll go from sitting to laying down in .002 seconds with a loud KONK on the floor. And then she'll laugh. So we really kind of worry about her pain tolerance because she really doesn't allow herself to recognize pain as hurting. Pretty much ever.
Another difference is that Emma, once asleep, doesn't stop her stimming. In fact, this is one area where we've almost got our hands tied as far as ridding her of the behavior because there's just no way for us to be there monitoring this and looking for when it's about to start and stopping it... We just can't afford to miss enough sleep for that to be realistic.
Emma will wake just slightly during any point in the night and in order to soothe herself, she'll rock. HARD. With her thumb in her mouth. It's mostly just her upper body that goes back and forth, but... she does it so that every rock slams her into the crib rails. HARD. After a few times of hearing this through the monitor, I generally go from my room to hers, move her away from the rail, tell her no, set her in the center of the mattress, and hope and pray she doesn't scoot back over again.
But last night... I was up 4 times. And this morning, when we were all somewhat awake but the kids were all content and there was no reason we had to jump out of bed, she started it up again.
I have no solution for this other than holding her and rocking her... which we have done... but there's just no real way to do this all night every night, and especially on her whim when she wakes just a little from her good sleep and wants to get back to sleep.
So... I'm hoping and praying that since her new bed will not make that same springs and wood banging sound that the current rail makes... that maybe, just maybe, she will decide it's just not as fun to bang her head on the canvas and mesh and will stop. Or at the very least, maybe it won't make quite so much noise so that I can sleep through it. :)
Waiting patiently, of course with some Dora goodness. That gown was HUGE on her :)
(and look... another pic of me, see? No complaining Ukraine folks, :) So what if I still have a kid on my lap?? :) )
This was smart-- they brought out the mask with the scent 'pasted' in it and let Brianna play with it for a few minutes. They brought her back totally awake and then put her under and did her IV after that. She liked playing with the mask, so that was good! And I'm also glad that they carried her back, didn't make her ride on the bed. She went right to a nurse, then the nurse asked if the anesthesiologist wanted to take her (he's about to be a daddy for the first time) and she went right to him too :) So... she said bye and smiled all the way back.
The smiles didn't last all that long though- this is right after surgery. When she saw Mike on their way through the halls toward the elevator, she sat up QUICK in bed, startled and pretty out of it, but we had to lay her back down and just walked next to her down to the recovery area. She wasn't in too bad of a mood- I was given a big chair and I sat and held her. We brought a DVD player and her FAVORITE movie of all time... Disney's Enchanted... and she was content to sit. You can see that her temples are really swollen in this picture. That's really the only thing that you could tell she had surgery by- visually anyway. She kept offsetting her jaw too, but only until the Demerol started to wear off a bit more :)
Brianna only cried or fussed once, and said "NO!!!" and that was when she was dressed, had eaten 1/2 a cup of sherbet, and we turned off her movie to go home :) She then watched it in the car on the drive home and finished it up on the couch at the house.
The rest of the day and most of the day Saturday she was a bit tired and clingy, but didn't seem to be in much pain. She had pain meds twice... once on Fri afternoon and once on Sat evening when she was acting really out of sorts. Then about an hour later she threw up. Three times. So I'm not sure if the discomfort was because she was starting to feel sick, or whether the pain meds made her throw up... but so long as she doesn't seem to need them, we're not just giving her pain meds around the clock.
This morning I'm home with the girls while Mike took the boys to church. Even though Brianna seems to be doing pretty good, she's not quite ready to be left in the nursery and especially not after throwing up last night. If she hadn't thrown up, we would have had her just come and sit with us, but instead decided another day at home was in order.
And this, just for fun, was taken the day before Bria's surgery. These three kids are little buddies :) Emma loves to crawl up on the ottoman then flip herself over it. Gives me a heart attack when she launches herself over it- knowing her head will hit that rug which has no pad, it's just on the tile. But Brianna and Micah are in on the fun too and Brianna goes over to tickle Emma and Micah just to sit with them and giggle. They sure have a lot of fun together, it's so neat to see their little personalities taking off!
In the mean time, I apologize if it comes up asking for a password!! Just hit "cancel" a few times and it should go away.
I'm afraid this is also affecting a few buttons that I've hosted on other sites, but there's nothing I can do about it until the router is fixed.
But... in the mean time... I'm so glad to have the ability TO host things that this will make me ever more grateful for my husband's web and computer prowess :)
Friday, July 10
Thank you all for your prayers! I'm glad Mike was able to take the day off so we could tag-team the kids as well as try to rest a little ourselves (getting up at 5am isn't the norm for us and we didn't get to bed before 12:30!).
So thankful she's doing well! Please continue to pray for her recovery as it is 5-10 days usually and this first day isn't always the hardest.
THANK YOU! :)
Thursday, July 9
Brianna's getting her adenoids removed and new ear tubes in tomorrow morning. 5:45 we'll be pulling out to drive down to the hospital and get started. Surgery should be at 7:20.
Please pray that all goes well and she has a quick and pain-free recovery!
And that's what the fun part is. Or... isn't. Both girls played nicely in the tub, I washed their hair and sat where I could keep checking on them and the boys... Brianna wanted out and got dried off and back in a diaper to play. Emma was enjoying herself so I stayed where I can see her and everyone else and let her have those 3" of water all to herself :) She loved it! I closed the glass doors to keep the splashing inside and watched as she spun herself around, laid on her belly, flipped over and sat up, splashed, and splashed, came up sputtering a time or two but always fine, always in sight, and having fun.
Then I went to get her out.
And noticed the BROWN. WATER.
Yes, she had pooped in the tub. And because the glass doors were closed, even tho I was close, I couldn't smell it. This was a good thing- but also a bad thing. A very. bad. thing. Because it was NASTY.
I put her on the far end of the tub and took out all the toys (of course she had ALL the toys... because it was a fun "play in the tub" time, not just a quick bath and get out). I refilled the tub a bit and scrubbed the ceramic. I rinsed Emma. I rinsed the tub. I washed Emma. With soap. Sweet smelling soap. I washed her hair. Wish shampoo. Nice smelling shampoo. I rinsed with water straight from the tap. Not from the tub. I didn't let the tub fill even.
And she STILL. SMELLS. LIKE. POOP.
Now I'm waiting until after dinner when Mike can keep the kids and I can Lysol the entire tub, toys and make sure there's NO residue of scent anywhere to be found. Then I can give her ANOTHER bath. With soap. Sweet smelling soap. And shampoo. Nice smelling shampoo. And pray she comes out smelling sweet and nice.
Then I can go take another shower myself. Because even if the scent didn't rub off on me, I feel gross.
Wednesday, July 8
I'm sure it's not the final product, but I want to replace the button I made almost a YEAR ago that is Emma's face over there on the sidebar. So... to better represent our growing family... I am playing around with a few other ideas. Yes, those are all actual footprints :) The baby's are from the ultrasound :)
Probably not the final product, but I'm having fun with it anyway! And now... off to bed...
Monday, July 6
Here are the promised pic's of R with my kiddos... her mom stayed a bit as well when she came to pick her up so she's in some photos too!
With the girls, Emma wanted up on R's lap SO badly... Then when she got there she went limp :)
Even tho the kids weren't super cooperative for this one, I like it :) Emma was put off that Brianna claimed R's lap, and Micah was an escapee!
Kristopher took the rest of these pictures-- he asked for the camera then snapped away!
A warm welcome- when D got here to pick up R, Micah went right to her and put his arms up! D is the bookstore manager and works at the front desk at our church, so the kids know her well and we stop in to visit a few minutes whenever we're at the church. As soon as D walked in to the family room, Emma was on her toes wanting to be held, and Brianna eventually got her turn in too :)
See? I really do exist... and Brianna's hiding the huge belly :)
So tonight when his movie finished he came over and wanted to feel the baby. He sat, patiently (for the first time), and waited for her to move. Except she was obviously not going to move. We had some interesting conversations that came of it, though, including some of the following:
- The baby will not stick her foot out of my belly to kick him, it would just be a bump that he would see or feel
- No, the baby isn't in "those"... but when she's born, they will have milk for her to drink. Yes, very much like a pig (thank you Charlotte's Web). And a cow, yes, but no, a blanket has fur, sortof, and doesn't give milk... it's also not alive and doesn't have babies...
- When the baby is born you won't see a foot coming out because you won't be there. And mommy's baby will come out when I have surgery, yes it will be sore for a while after and I won't be able to pick up the other kids or run around, but it will all be ok.
- My belly feels 'mushy' and then hard because there's a balloon in my tummy with water in it, and the baby is in that water. She needs the water to protect her. The hard you feel in the water when you press on my tummy is the baby.
- No, when she's born you won't be allowed to try to wake her up like you're doing now in order to see her move. Why not? Babies cry when you wake them up by pushing on them. We want her to sleep when she needs to sleep and when she needs to be awake she will be!
Ah... the joy of 5 yr olds. If only Mike had been here, I'm sure he would have enjoyed the conversation too :) But hey, I figure I get off easy since the "how do they come out?" question is as simple as "surgery" this time around :) :). What kind of questions have your kids asked you about pregnancy or babies being born?? And if anyone from K's school in the fall is reading this... be forewarned... I can just imagine what he's going to come out with once the baby is born and he goes back to school the next day!! LOL
We bought a life jacket for the younger kids when we went out the other day- We'd picked one up for Kristopher already but when we found out how much Brianna liked the kayak... we decided to get one that would fit her too. She didn't like the idea of being put down in the water and let go of... but the life vest DID keep her afloat. It did NOT, however, flip Brianna onto her back :( But, the idea is for it to keep her from sinking if something happened. And when placed on her back she DID float on her back, which was good.
Today I took Brianna in for her pre-op visit. She gets her adenoids out on Friday and new ear tubes. Hopefully it will be day-surgery but he said to plan on up to a 23 hour stay depending on how she does drinking after surgery.
While we were waiting in the waiting room... Brianna tapped her diaper and said "uh oh" and then went back to watching the fish. Weird. Then she did it again. I asked if she wanted to go potty and sure enough she went in and peed in the toilet! And... her diaper was dry :) Maybe we'll potty train soon after all?
Brianna also ventured out and ate not one, but THREE small mandarin orange pieces today! She's usually not in to trying anything new... but this worked! We really struggle with getting her to eat. Especially things that are healthy.
We put Emma in the jacket too. Not necessarily because Mike would take her out in the kayak- not sure she could sit still long enough to enjoy it. But because I was curious whether it would give us a similar effect to the 'head float' that we borrowed a week ago. It's not nearly as buoyant, and the head piece is much more flimsy than I would have liked, but as you can see, it did keep her afloat for the most part. It also DID put her back onto her back if she was on her face. Problem is when she gets on her side... with 1/2 her head in the water. She can't breathe nor flip. Maybe just a skill to work on? I think we'll hold off on buying the head float and try this out some more!
Emma has been chewing again. It was BAD then it was GONE and now it's back about 1/4 of what it was when it was really bad... but still there.
She did, however, begin going to her 'new seat' at the table instead of going to Brianna's chair (her old seat) if Brianna is already at the table. She's also started to COME to us when we put out our hands and say "come here". This is HUGE!!
This is on the 4th of July, we put out the kiddy pool, the rice bin, and a bunch of lawn blankets as well as a bin of water for Kristopher (on the other side of the driveway) for him to play with his squirt gun in. Mike and I cleaned out the garage, sorted through some things but mostly just put away stuff that we had 'set aside' and not put back in a good home. I also found 3 boxes that we never unpacked 2 years ago when we moved here!
Anyway, just before lunch I got everyone drinks and Micah laid right down in the 1" of water and took his bottle there :)
Micah's made some big strides here lately. He comes (most of the time) when we call him and he can see us and we gesture to come. He also is starting to eat better... again... and I think we're back where we started before he regressed. Hopefully we can go forward from here!
Micah is walking GREAT, 100% of the time, and is able to go up and down low-incline ramps. He's even just figured out how to climb up on our chairs AND how to safely get down :) His favorite is to get on the coffee table we put in front of the TV (to keep the kids just a foot or 2 away from the TV set) and to lay on there. Of course he's not allowed... but... :)
Micah is also starting to listen when told not to go into an area he's not allowed. Not always, we're still probably less than 50/50, but it is working SOMETIMES which is a blessing :)
Kristopher had a good time outside with his squirt gun and 'bugs' in a water bucket. So much so, that yesterday when Mike offered him 3 choices- go in the pool, go out to the park in the kayak (for the first time), or go in the front yard and play with a bucket of water... he wanted to play with the water! Mike washed the vans :)
Kristopher is doing great :) His imagination is in full swing, and he's loving having his siblings to play with this summer. He's doing better with interacting with them and we've set up a few boundaries that are helping him to not have the opportunity to be in trouble.
Kristopher has also learned how to unlock the front door with a key, which is great when I have my hands full (of other kids)! He feels so big being a helper and I appreciate it too! He also LOVES to go get the mail and can go down to the mailbox by himself, he watches for cars (we're on a dead-end road so there aren't many, but if there is a car often it's speeding...), and he comes back up through the garden area so he's not walking by the parked cars in the driveway. Often people are coming or going and by the time he's gotten to the driveway I don't want someone to forget he was back there and not look for him!!
Kristopher has also been doing 100% better with bedtime now that the kids are going to bed a little later AND he's being great with his new 'room mate', Brianna.
This pic is cute, but more than anything, I want to know how Emma got in the bucket!?!?! I heard Micah fuss and had been out of the room for a few minutes. I came back to find E and M in the bin, and B was climbing in. I went and got my camera and came back to find Bria sitting loving on Micah. K hadn't been in the room... I have NO IDEA how Emma, especially, got in there! Micah too... but I can see him maneuvering it since he does at least stand-alone!
Sunday, July 5
I've been researching products for a while so we'd decided which things we were going to buy... but I hadn't sat down and done it yet or found the best places to buy from until tonight. Knowing some things take 3-4 weeks to come in, we decided to buy the big stuff now so we have it before school starts the 2nd week of August and life gets crazy!
I didn't pay any shipping, though 3 items will have to be picked up at Wal-Mart (not like I'm not there 3 or 4 times a month anyway!). I also saved over $70 on the things we bought based on the lowest price available in-store or without online coupons... And I didn't buy anything I hadn't intended to! Even better! :)
I'm especially pleased at the deal I got on the Graco Snugride 32 Infant Carseat/Carrier! $126 :) This was with a coupon and by ordering it as a 'new customer' through www.diapers.com. I also got $5 off of a pack of the diapers I use all the time... Yes, an ACTUAL $5 savings- less than what I pay at Wal-Mart... with a coupon... and delivered to my door! I may start doing that more regularly if it costs the same as buying them at the store even, because it's one less thing to pick-up while I'm out and there are occasional promotions. You can even use regular clipped coupons there (I think).
Not so bad?
Thursday, July 2
Then back to the house and I put lunch together for the 4 little ones, we all ate, and K went to my bedroom to watch a movie and 'rest'. The girls played on the porch after Brianna combated rest time and I gave up, and Micah slept. R and I watched Bride Wars. It was cute- I hadn't seen it or really even heard much about it because I don't watch TV but it's one that my sister was planning on renting when I was up there and it didn't work out.
After the movie we sat around the house a bit, R listened to her i-pod and I got a load of laundry started and the dishwasher loaded. The kids enjoyed the freedom of just hanging out and playing, and we had a relaxing afternoon. R and I also looked through some old pictures of Mike and I as little kids and even a few baby photos (not together, we met in junior high...). Kristopher surprised me by actually cleaning his room when asked... a nice treat :)
Around 5 R's mom picked her up but came in and visited for a while. All the kids needed a turn in her lap, too, and Kristopher was having fun playing with my camera- so I actually have some photos from today! I forgot to get permission to post them tho-- will have to ask :)
We enjoyed the day, it's nice to get out of the 'regular' of every day. I can't tell you when the last time that I watched a movie at 12:30 in the afternoon was. Well... one that was actually made for adults anyway :) And the visit to the park is always more fun with company!
I love to see Brianna and R interact. You can see the special place that Brianna holds in R's life and Brianna was telling me she wouldn't hold my hand today at the park, but she held R's hand willingly... so I know the feeling is mutual :) When Brianna was 2 months old and was diagnosed with Ds, one of the first people that we told were R and her mom. That day it was presented to R that Brianna would need a role model and we were so glad to know R and all that she has accomplished and that Brianna would be able to grow up with her as a role model.
Let me tell you, R takes that job seriously and I love it :) We talked a bit about it today, even. It's nice getting to spend time with friends, and a nice laid-back relaxing day was much needed this week :)
Oh, and while we were at the grocery store we ran into another friend and her daughter w/ Ds. L is 14. L's mom hadn't met our newest kids yet-- it's been a while since we saw each other face to face! So as we congregated in the entrance to the grocery store, we had almost 3 'decades' of sweet people that happen to have that extra chromosome, all in one place...
Maybe some pic's in the next few days...
During pregnancy the placenta releases a thing called Relaxin, which acts on the cartilage of the body, allowing it to loosen. This is especially important for the rib cage to expand allowing more room to breathe :) But it's not 'specific' to one area of the body, so it works on every area of cartilage.
The pelvis/hips are made up of 4 bones, connected with cartilage. So with this 'loosened' the bones have more freedom than usual. What this means is that some people have this pain or sometimes just some discomfort during pregnancy. He said it essentially feels like two broken bones rubbing against each other. YES! And it HURTS! LOL
He said that I'm getting to the point in pregnancy where I can't take anti-inflammatories (which I'd rather not take at all when I'm pregnant anyway!) and that Aspirin would be a big no-no at this time too (which I believe is ALWAYS the case in pregnancy...). But then he said "because of the heart". Hmm... how so? I was curious... I know you can't take certain meds during pregnancy, but the 'why' of many of them I never thought about. Apparently, Aspirin can cause the baby's PDA to close prematurely resulting in pulmonay hypertension. Who knew? (ok, maybe YOU did, but I thought it was interesting anyway!).
So, I got my little mini-medical-lesson at the doctor's yesterday, I find it fascinating to learn the why's and how's of things. I started out wanting to go into the medical field and going through the CNA training and certification in high school. Then God brought me through a few other 'changes in plans' and eventually I got my teaching degree. I am often glad I took all those medical terminology classes and such all those years ago, though, because I am sure that it helped me to understand much more of the medical complexities that each of my kiddos presents!
Oh, and as for managing the pain that comes with laying down that feels like broken bones rubbing together-- there's pretty much nothing I can do about it. Sleep on a soft matress cover (already doing it, thanks Mom for getting the one you had out for me!) and with a pillow between the knees to keep the hips level (yep, do that too). And if it gets to where the pain isn't subsiding after a little bit... take some Tylenol. Otherwise-- Grin and bear it :)
I gotta say, she's worth it :)
Wednesday, July 1
I called down to the hospital and found out I could go TODAY before 4 for the EKG so I went ahead and did that. My mom was easily available and came over for just less than an hour. I went to one of the hospital's affiliated centers that's just 5 min from my house (and has apparently been there for 2 years and I had NO IDEA!).
I couldn't get a hold of the lab that I have to go to in order to find out whether they're open on Friday or not, so that one may have to wait until Monday... or Tuesday. Monday is Brianna's pre-op for her adenoids and tubes too. And tomorrow I have a friend coming over to spend the day with us so tomorrow's out too.
Anyway, I hope everyone enjoys their Independence Day weekend! Any fun plans??
Baby sounds good, measuring fine, weight gain is fine, no worries with her.
But *I* win this time. My heartbeat is irregular. Not really a huge surprise because I was diagnosed with an innocent heart murmur when I was 13. But at the beginning of the pregnancy it wasn't even audible. Today it was audible in the BP cuff w/ stethoscope and a palpated pulse. So, as the doctor put it, I have won myself an EKG.
Just what I always wanted... I'd much rather 'win' on insurance issues and such, not on weird symptoms or issues!
My doctor is also wondering whether the episodes of what seems like maybe low blood sugar are actually related to the heart. Who knows. Looks like Friday I get to go visit the hospital for an EKG and then go down to the lab for the glucose testing. Still unsure of whether the glucose test will tell about low blood sugar? It will tell whether the pancreas is working well to deal with a high rate of sugar all at once, but not necessarily what my body does without sugar. I have no idea... but- that's what Friday looks like now, fun fun fun...