Today's best child award would have to go to Clayton. I am not blaming things 1 & 2 for their fussiness seeing as one has a swollen, bloody protrusion where I pray a tooth will soon appear and the other is suffering from the effects of mom and dad giving a go at one less Rx copay - the reflux meds. Too soon? YES!!! Sorry dear, our bad. And yes we already made a call for a round of refills and a trip to the pharmacy and dumped a few alternate meds down her throat but no we are not yet forgiven. When they came out I am pretty sure the right halves of their bodies were Niphedepine and the left halves Ibuprofen but miss Mya is most definitely a much more diverse concoction by this point. So we had to try? Sorry.
So what did we learn today: We do not stand on people...unless invited. Free car seats are worth about what you pay for them (Now taking suggestions for convertible car seats that cost less than our monthly copays). That letter we keep getting from the therapy services, we should open it. It is a bill and they very much want us to pay them. And finally: it is a good thing the new sitter starts next week and not today or we might just be back on the hunt.
Thursday, March 31, 2011
Tuesday, March 29, 2011
Who'da thunk it
We have a new sitter starting next week and she just spent the morning getting acquainted with our systems and routines. As we worked our way through the morning I gave her some tips on how to help the day go more smoothly and I realized something: I am good at this. Who'd have thought! It was about 11 months ago now that they were handing us Ella and Clayton and actually letting us walk out the doors of the hospital. If you have ever made that walk with a new child you know how terrifying it can be. The walk becomes even more terrifying if the children you are taking home have been hooked up to machines for the last 7 weeks with an army of doctors and nurses monitoring their every breath and heartbeat and actually intervening at times to help those hearts continue to beat and those breaths continue to come. So when they unhook the last monitor, say good luck and send you on your way, you kinda want to ask, are you sure? How will we know if they have a heart rate drop or burp and can't clear their airway or any of the zillion other things that we had seen happen in the last months? You mean this is MY job now? I guess that is kind of how it is supposed to work for new parents we just had a little delay, or maybe not so much a delay seeing as they cheated and even that trip home at 7 weeks old was over a week before their due date.
As she was thumbing through their first 6 month photo albums with all the feeding tube pictures and later when she was learning to feed Mya we talked a little about their first few months and how they learned to eat. I kinda smiled when I told her that one of the cautions we first heard when we got Mya's MRI results was that she might not ever take a bottle. Well look at her now. It might not be the easiest task of the day but ever since April 17, 2010 when she finished her first complete bottle she hasn't looked back. I remember those 2 weeks when we just had Ella and Clayton home and how during the night feedings we were in a panic: how are we going to do this when we have 3? But somehow we just did. You sleep when you can, you get help when you can and at some point you emerge from the blur and realize you have become a competent parent. Who'd have thought.
I love a good before and after shot:
As she was thumbing through their first 6 month photo albums with all the feeding tube pictures and later when she was learning to feed Mya we talked a little about their first few months and how they learned to eat. I kinda smiled when I told her that one of the cautions we first heard when we got Mya's MRI results was that she might not ever take a bottle. Well look at her now. It might not be the easiest task of the day but ever since April 17, 2010 when she finished her first complete bottle she hasn't looked back. I remember those 2 weeks when we just had Ella and Clayton home and how during the night feedings we were in a panic: how are we going to do this when we have 3? But somehow we just did. You sleep when you can, you get help when you can and at some point you emerge from the blur and realize you have become a competent parent. Who'd have thought.
I love a good before and after shot:
Thursday, March 24, 2011
Happy Apples
I never thought I would be so excited to hear that Clayton ate apples. Until a few weeks ago he was the king of apples. Does that have apples in it mom? Nope? Ok how about if I empty my belly for you. Really its like he can smell that the first bite doesn't contain anything sweet and is gagging himself sick before the spoon even reaches his tongue. But after a week of diaper rash and upset tummies and nothing but formula and the occasional Cheerio (yes I caved but sick babies get to break the rules) today he reportedly ate apples and kale for his daddy. Sounds yummy right? Hooray for nutrition! Ella is still not so impressed with the spoon, but I did get her to take a few bites of blueberries last night, so I will call that progress. Mya you might be giving up your spot on the best eater throne very soon. Well as soon as mommy has a chance to go shopping because I think we are out of apples. Until them reign on missy.
Speaking of my best eater: Mya ate so well for OT this week. She took a whole cube of cereal topped with a helping of apples and then half her bottle. I have been having trouble getting her to eat solids without coughing and gagging on the second bite and I always have to deposit it to the side of her mouth. But for the first time ever she started taking it off of the spoon for Margaret. She also took a few bites without being cued, which means that she saw the spoon coming to her mouth. We tried a few of the Cheeto-style puffs and Mya quickly expressed her displeasure to the new texture and gave Margaret a run for her money. She was chewing while voicing her opinion though, so that was very promising.
Speaking of my best eater: Mya ate so well for OT this week. She took a whole cube of cereal topped with a helping of apples and then half her bottle. I have been having trouble getting her to eat solids without coughing and gagging on the second bite and I always have to deposit it to the side of her mouth. But for the first time ever she started taking it off of the spoon for Margaret. She also took a few bites without being cued, which means that she saw the spoon coming to her mouth. We tried a few of the Cheeto-style puffs and Mya quickly expressed her displeasure to the new texture and gave Margaret a run for her money. She was chewing while voicing her opinion though, so that was very promising.
Sunday, March 20, 2011
Shadows
I am really enjoying the interactions between these kids. Ella and Clayton have pretty much been attached at the hip since they learned how to move their own little bodies. Now that Ella is crawling (yay!!) they just follow each other from room to room. Little people are fun to watch. We try to protect Mya from her little brother the bulldozer when we aren't in the middle of the action otherwise when we come to answer the familiar scream we usually find something like this (and of course we reach for the camera before the attacking child like good parents should):
Hey buddy..that seat is taken. She doesn't seem to mind being crawled over and pushed around, it is the hand to the face that usually sets her off. In fact, when they stay off of her head I think she enjoys it. We use the collective commotion and the bond between these kiddos in Mya's therapy a lot and the difference in her demeanor when one of them is at her side is pretty remarkable. I am so looking forward to watching that bond grow.
Some of my recent favorites:
Hey buddy..that seat is taken. She doesn't seem to mind being crawled over and pushed around, it is the hand to the face that usually sets her off. In fact, when they stay off of her head I think she enjoys it. We use the collective commotion and the bond between these kiddos in Mya's therapy a lot and the difference in her demeanor when one of them is at her side is pretty remarkable. I am so looking forward to watching that bond grow.
Some of my recent favorites:
Thursday, March 17, 2011
Ouch
So the big kids have some serious diaper rash. Like raw and blistering and oozing and screaming mad when you even act like you are going to change them. I would cry too. It is horrible. I talked to the doctor's office today and they pretty much confirmed what the internet already told me to do. Gotta love the internet. Last night we tried baking soda baths and A&D. They suggested hydrocortizone & desitin today, half of which we have been doing for days. Ella even got to hang out in her birthday suit for a bit. Hopefully tomorrow brings some relief! Poor babies. Mya's bum is still looking smooth so hopefully she is spared from this nonsense.
So during my research to solve the booty crisis I came across the suggestion of cloth diapers to let the little bums breath a bit more. I have always been tempted to give it a try but quickly dismiss the idea when I realize that the next stressor in my life might just be the one to push me over the edge. Kinda like my pledge to pump right up until they knocked on the door to cart me off to the loony-bin. That happened when they were around about 8 months old a few weeks into the great Mya scream-fest of 2010. But anyway, I had just finished reading my friend Dr. Jo's blog about this very subject and felt inspired so I pulled the trigger. Well, like half-way pulled the trigger. I found some all-in-ones on clearance so got a few to see if there is some way to fit it into our routine. I had to first promise Bernie that he would not have to re-touch, scrap, dunk or wash a single poopy diaper so long as he lives. So lets just say he is not quite on board with the idea as of yet (and Jamie I am sorry if you get hate mail). The tentative plan, as Mya poops every other day pretty much like clockwork, is to use them primarily for her on the 'other' day. Plus, I have always been curious if the reason we have to keep cream on Ella 24/7 has something to do with the diapers or wipes so this will give me a chance to test that theory.
Either way, we need to kick these rashes and I am willing to try anything. Something about Mylanta and Vaseline keeps popping up, so that might be on the checklist for tomorrow.
So during my research to solve the booty crisis I came across the suggestion of cloth diapers to let the little bums breath a bit more. I have always been tempted to give it a try but quickly dismiss the idea when I realize that the next stressor in my life might just be the one to push me over the edge. Kinda like my pledge to pump right up until they knocked on the door to cart me off to the loony-bin. That happened when they were around about 8 months old a few weeks into the great Mya scream-fest of 2010. But anyway, I had just finished reading my friend Dr. Jo's blog about this very subject and felt inspired so I pulled the trigger. Well, like half-way pulled the trigger. I found some all-in-ones on clearance so got a few to see if there is some way to fit it into our routine. I had to first promise Bernie that he would not have to re-touch, scrap, dunk or wash a single poopy diaper so long as he lives. So lets just say he is not quite on board with the idea as of yet (and Jamie I am sorry if you get hate mail). The tentative plan, as Mya poops every other day pretty much like clockwork, is to use them primarily for her on the 'other' day. Plus, I have always been curious if the reason we have to keep cream on Ella 24/7 has something to do with the diapers or wipes so this will give me a chance to test that theory.
Either way, we need to kick these rashes and I am willing to try anything. Something about Mylanta and Vaseline keeps popping up, so that might be on the checklist for tomorrow.
Tuesday, March 15, 2011
Elephants
We have living in the corner of our room a rather large elephant. There are really 3 choices about what you do about said elephant. You can address it, ignore it or just occasionally glance in its direction. We have two constant reminders of where a child should be developmentally and I find that about the time they reach a transition is when the elephant tends to make a bit more noise and occasionally invite a few friends over to play. The current transition revolves around food. Ella and Clayton will be moving off of formula as soon as I can conquer their hunger strike. Right now we only want to eat cheerios and goldfish so we will be giving those up for lent in hopes of adding a bit more variety into our diets. But I have no doubt that they will not in fact starve themselves and will eventually have formula-free diets. So what, the elephant whispers in my ear, are we going to do about Mya. We currently spend about 30 minutes to an hour 4 times a day helping her take a bottle and a bit less time a few times a day feeding her solids. And even though she did finish her brothers discarded applesauce this morning, based on volume I would say that she isn't eating enough. But she does continue to grow very well so while we are keeping an eye on this one, we won't be addressing the elephant until the growth becomes a problem and we run out of hours in the day.
For the most part I try not to pretend but I do find that others tend do the pretending for us. No, I cannot imagine what it will be like when all three are ...fill in the blank...crawling all over the furniture, driving, going to college. I don't imagine the challenge of having three in those situations is something we have to worry about. I fully understand that people mean well and when you meet a child who so obviously has challenges sometimes it is easier to just act like you don't notice the elephant, but I for one would much rather be real.
I have spent a long time and continue to struggle to come to grips with the fact that Mya's future looks nothing like the future we would have chosen for her. We will throw every possible resource her way and encourage her to surprise us all, but there are some thing that no amount of therapy or science can fix. If we pretend otherwise I think we lose sight of who she is right now and the beautiful person she will become no matter where her development takes her. The likely answer to the 'do they think she will ever...' question that we so often get and that I tend to prefer over the pretending is that odds are probably not, or at least not in the way you are imagining. The parts of the brain that control that kind of thing are largely absent. But brains are funny and complicated and people do things all the time that it seems like they shouldn't so who knows.
So yes, we know he is there and there are sure to be more issues to address and unwelcome conversations with doctors and therapists and strangers on the street to have. Plus he won't fit out the door, so I am guessing he is here to stay.
For the most part I try not to pretend but I do find that others tend do the pretending for us. No, I cannot imagine what it will be like when all three are ...fill in the blank...crawling all over the furniture, driving, going to college. I don't imagine the challenge of having three in those situations is something we have to worry about. I fully understand that people mean well and when you meet a child who so obviously has challenges sometimes it is easier to just act like you don't notice the elephant, but I for one would much rather be real.
I have spent a long time and continue to struggle to come to grips with the fact that Mya's future looks nothing like the future we would have chosen for her. We will throw every possible resource her way and encourage her to surprise us all, but there are some thing that no amount of therapy or science can fix. If we pretend otherwise I think we lose sight of who she is right now and the beautiful person she will become no matter where her development takes her. The likely answer to the 'do they think she will ever...' question that we so often get and that I tend to prefer over the pretending is that odds are probably not, or at least not in the way you are imagining. The parts of the brain that control that kind of thing are largely absent. But brains are funny and complicated and people do things all the time that it seems like they shouldn't so who knows.
So yes, we know he is there and there are sure to be more issues to address and unwelcome conversations with doctors and therapists and strangers on the street to have. Plus he won't fit out the door, so I am guessing he is here to stay.
Friday, March 11, 2011
Bouncey Bouncey
I ran out of things to accomplish while bouncing Miss Mya, who seems to be nodding off so freedom might just be in my future so I thought I would share my exciting morning. Please nap dear, the people really don't want to hear about taxes. I just talked to someone at the MO Department of Labor, and get this...he was very helpful! I am trying to finish my taxes this year and the whole nanny tax issue adds some extra excitement. I understand why 90% of people that hire nannies just ignore the tax altogether and most of the remaining 10% pay enormous rates to have someone else handle it, because well it is a pain. But, I am an upstanding citizen and I made it my mission to tackle this little maze of paperwork. I never heard from the DOL about unemployment tax and that is the final piece I need before I can cash in the winnings provided by my tiny little tax deductions. So I just called one of the 25 names they have listed on the website and was routed to the proper person. He saw that I had registered online back in September and was really surprised and impressed that I did it correctly and congratulated me on my accomplishment. Umm, perhaps if it tends to be a problem you should simplify the process a bit? Just a thought. I think I owe a grand total of less than $200. That hardly seems worth all the fuss, but go ahead and send me the forms I guess.
And we have sleep just in time for therapy #2 of the day. That's all for now.
And we have sleep just in time for therapy #2 of the day. That's all for now.
Wednesday, March 9, 2011
Toddlers?
We survived the birthday week and the 12 month check ups, just barely. We are by birth order: 19 lbs 8 oz, 16 lbs 11 oz., and 19 lbs 14 oz. I just read that most babies triple their birth weight the first year, so I was curious and I have a calculator handy: Ella x 6.3, Mya x 8.4, and Clayton x 5.4. Good growing guys! Miss Mya made it on the growth chart for the first time this visit. Welcome to the 3rd percentile Missy. Ella went from 10th to 25th and Clayton went from 25th to 10th. We like to take turns, so that makes sense.
As far as stressful doctors visits I think this might have been the winner. Usually the stressful part is just on my end with the packing up of children, 4 trips up and down the stairs and 15 minute ride to the office. Then Bernie meets me in the parking lot to haul them in and it is relatively smooth sailing...until the large needles come out and mom has to repeat in reverse order only this time with tearful babies. But they were unusually busy yesterday so our usually 2 minute wait in the room was more like 20 in which time Clayton was passed between mom and dad no fewer than 5 times, Ella shredded the paper on the exam table into bite size pieces and sampled them and we realized how very grateful we are that we only have 1 more well-baby visit in the next year.
It is times like this that you realize that you really are outnumbered. As soon as you get in the room you strip them down to diapers to weigh and measure and then wait for the doctor. It used to be no big deal because then you just sit half naked babies back in their carriers under their blankets and hand them something to chew on. Problem is, now they move. The 'they' here mostly meaning Clayton. Ella was relatively content with the sitting idea for the first half of the wait and eating paper the second half. They don't have clothes on so you don't really want to let them crawl around on the cold dirty tile floor. So we played pass the wiggler and distract for what seemed like forever while rocking nap-deprived Mya's seat with our feet.
On this visit we learned that a) Bernie can no longer 2 fist the big kids' pumpkin seats up the narrow flight of stairs but the elevator we have always bypassed is roomy enough for us all b) Clayton has reached maximum pumpkin seat length so that is a challenge we no longer need to tackle anyway and c) Ella and Clayton are ready for whole milk which is basically like winning the lottery.
As far as stressful doctors visits I think this might have been the winner. Usually the stressful part is just on my end with the packing up of children, 4 trips up and down the stairs and 15 minute ride to the office. Then Bernie meets me in the parking lot to haul them in and it is relatively smooth sailing...until the large needles come out and mom has to repeat in reverse order only this time with tearful babies. But they were unusually busy yesterday so our usually 2 minute wait in the room was more like 20 in which time Clayton was passed between mom and dad no fewer than 5 times, Ella shredded the paper on the exam table into bite size pieces and sampled them and we realized how very grateful we are that we only have 1 more well-baby visit in the next year.
It is times like this that you realize that you really are outnumbered. As soon as you get in the room you strip them down to diapers to weigh and measure and then wait for the doctor. It used to be no big deal because then you just sit half naked babies back in their carriers under their blankets and hand them something to chew on. Problem is, now they move. The 'they' here mostly meaning Clayton. Ella was relatively content with the sitting idea for the first half of the wait and eating paper the second half. They don't have clothes on so you don't really want to let them crawl around on the cold dirty tile floor. So we played pass the wiggler and distract for what seemed like forever while rocking nap-deprived Mya's seat with our feet.
On this visit we learned that a) Bernie can no longer 2 fist the big kids' pumpkin seats up the narrow flight of stairs but the elevator we have always bypassed is roomy enough for us all b) Clayton has reached maximum pumpkin seat length so that is a challenge we no longer need to tackle anyway and c) Ella and Clayton are ready for whole milk which is basically like winning the lottery.
Tuesday, March 1, 2011
Cookies Anyone?
Is it just me or are the Girl Scouts out in force this year? Bernie gave in at Lowes on Saturday, I got hit up at two stores on Sunday and again at the cafeteria at work yesterday. I even saw a dad flagging down cars on Manchester. That is some serious salesmanship. The pre-teen down the street just delivered our order tonight, so I think we are set for a while. I think next time the Veterans call for a donation I will tell them to call the Girl Scouts, they have all our money.
It is a surprise 2 therapy week. The surprise because I totally didn't realize today was the first of the month so OT comes on Tuesday instead of Wednesday this week. Thankfully Margaret knows me and sent a reminder email or I probably would have answered the door in PJs and handed her a stinky child, which I know she would have been cool with, because well...been there, but it makes me feel more like an accomplished mother to have non smelly children and to a least be dressed. But as a result I only got 33 1/3% (that's 1 out of 3 for the non actuarial readers) of the planned baths done today. Ella and Clayton weren't nearly as stinky though so I have no lingering guilt about making them wait another day.
Mya still refuses to laugh for Margaret. PT Patty has had 2 visit with hysterical laughter and they always talk between visits to coordinate her care so Margaret has been trying to duplicate the laughter for weeks. She got some pretty good smiles today, but no laughing. I think the problem is that Margaret is too gentle and Mya likes to rough house, so initiating laughter takes some serious bouncing. Next month I might suggest bribery with Carmel Delights.
It is a surprise 2 therapy week. The surprise because I totally didn't realize today was the first of the month so OT comes on Tuesday instead of Wednesday this week. Thankfully Margaret knows me and sent a reminder email or I probably would have answered the door in PJs and handed her a stinky child, which I know she would have been cool with, because well...been there, but it makes me feel more like an accomplished mother to have non smelly children and to a least be dressed. But as a result I only got 33 1/3% (that's 1 out of 3 for the non actuarial readers) of the planned baths done today. Ella and Clayton weren't nearly as stinky though so I have no lingering guilt about making them wait another day.
Mya still refuses to laugh for Margaret. PT Patty has had 2 visit with hysterical laughter and they always talk between visits to coordinate her care so Margaret has been trying to duplicate the laughter for weeks. She got some pretty good smiles today, but no laughing. I think the problem is that Margaret is too gentle and Mya likes to rough house, so initiating laughter takes some serious bouncing. Next month I might suggest bribery with Carmel Delights.
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