Sunday, December 12, 2010
birthday kids
Just a quick one tonight - more pics to come - to post pics of our fall/winter birthday lineup. Happy 1st Birthday to Holden, Happy 4th Birthday to Macy and today, Happy 3rd Birthday to Dawson!!
We will be celebrating for our little monkey boy right after Christmas, but he practiced his cake-raiding skills during Macy and Holden's joint party LOL! :)
Friday, December 03, 2010
the hardest thing
"Letting go doesn’t mean giving up, but rather accepting that there are things that cannot be."
- Anonymous
I am very behind in posting - birthdays, Thanksgiving, many pictures ... but I wanted to go ahead and share the most important thing that has been going on in our family recently.
This morning Matt and I sat for the better part of an hour and put pen to paper many times over, signing over our parental rights for our little Serbian princess, Emerson, before leaving her in the arms of a new family.
This was not a sudden decision, though we are only now sharing it; we actually took the first steps toward this end a few months ago and have been slowly transitioning all the children involved toward this new reality. A couple playdates and meetings, many weekend visits, lots of talking and questioning and yes, much second-guessing, and now that all is final we are ready to share this very personal and very private decision.
I don't feel a need to elaborate on all the reasons for our decision - I think anyone who has read my blog over the last 18 months knows enough of those finer details - but ultimately it came down to what was best for Em and what was best for our other children. There are some people who can't - and never will - understand or accept that, and that's their right to do so as much as it's my right to disagree and stand by our decision. To put it plainly, we didn't fit. It's nothing wrong with Em, or with us - we are each unique unto ourselves - but just that it wasn't the best combination for any of us to achieve our full potentials and more importantly, lasting happiness. Our family is large, active, busy, loud - all things that are very difficult for a child with severe sensory needs to thrive amdist. Trying to balance everyone's needs and still keep our family intact had become virtually impossible and most of the time we found ourselves splitting into pieces, me with Em at home and Matt with the other kids at a sports game or community activity. It hurts to feel like you can't really be a family, that all of the kids are missing out on the thing most important - togetherness.
And though some people would say that you must bend, you must adapt, you must deal - we refuse to accept that for our kids, including Em. Just as much as we want to enjoy our biological children and make memories as a family, we also want that for Em and at some point, we had to admit that bending to the point of breaking was only hurting us and hurting her - and we all deserved more than that.
As always, we want Em to progress to the best of her ability, on her own timeline, and to be happy and connected and part of something while she does it. It is probably one of the hardest things for a parent to do, to admit that they are not the best ones to make that happen. But however hard it is, it's still the right thing.
I did not always feel that way, and admit when we first started our adoption journey and I came across "disruption" I was horrified. How could someone consciously take in a child, only to cast them out? But I suppose I had a similar difficult time understanding how birth mothers gave up a biological child for adoption. And as it often does, life forced me to walk that path so that I might understand, and remember to check my judgements on decisions I've never been in the position to make.
I am positive that some of this decision is motivated by my own limitations - what I feel I can and cannot handle, what I'm willing to handle - and I accept that often disappointing humanness in me. Down syndrome may not have been able to gift me with an infinite amount of patience and grace, but it certainly taught me to accept and even embrace the qualities - positive and negative - that lie within each of us. I am sure that it is that reality which many people find fault in when it comes to adoption disruption and perhaps adoption in general. Very rarely is a child given up by a parent, whether they be teenagers or seasoned adoptive parents - at birth, or after a few weeks, or a few years - without the parent knowing that possibly, somewhere deep inside, they had it in them to continue on. But I think perhaps it is part of our parental instincts to want more than that for our children - to want them not to have "just enough" but to have as much as life will allow. And while we probably could continue on in this difficult, stumbling dance trying to parent all to our best ability, only our own sense of morality and duty would benefit. Reality, however, for our biological children and for our adopted child, would be the thing to suffer. And I'm not willing to let that happen.
The fact is that no matter what this says about us, or me, we are at peace with it. There's really no argument, no disparaging remark, no judgemental comment, that I have not made to myself many times over in the last few months. Sophocles had it right when he stated, "There is no witness so terrible, no accuser so powerful as conscience which dwells within us." But I think often our conscience serves to show us the fallacies of our own moral arguments - it teaches us to be more understanding, more open-minded, more compassionate ... especially toward ourselves.
Developmental milestones and all other practical issues aside, I know we did two great things for Em; the greatest being getting her out of the cell she laid in for 22 months and the second greatest being getting her to the amazing family we feel sure is better able to help her find herself, her own potential, and as much happiness as all children should have. Everything else in between pales in significance and whatever failings we struggle with in our hearts, we do not doubt those two successes.
This has been a very emotional and difficult time for our family and we know the coming weeks and months will be that much harder. We are very fortunate to have family and friends who are all incredibly supportive and understanding of our decision. I will be moderating comments on this blog for some time to come and while everyone is entitled to share whatever opinion they feel they need to, for those who feel unable to share with a loved one or friend in real life and instead must direct it toward us - I will not be publishing any negative, critical or hurtful comments. I will make only this one response, to blanket all of them - I respect your opinion. I am very sorry you feel that way and I wish you the best, as I'm sure you would wish us and Em! Our family is healing right now and I won't waste one ounce of emotional energy on further explaining or defending this incredibly difficult choice. We also sincerely appreciate comments, thoughts and prayers of support.
We are grateful to Em's new family for inspiring us and supporting us so much along the way and we are especially grateful to Em, for all of her lessons and especially for all of the snorting giggles and crinkly-eyed smiles that we will miss the most. We can't wait to see what this next exciting chapter will hold for you, little one.
Tuesday, October 05, 2010
the bodacious letter "B"
B is for Busy.
Which is what we have been the last few weeks! Soccer for Cade and Parker, trying to get 5 kids ready for and off to a new school year, deciding not to send 2 of them (Dawson and Emerson), a prenatal appointment and ultrasound, the usual stuff. Everyone is doing really well, especially our school-goers (including our newest, Macy, who loves PreK!)
B is for Birthdays.
And Belated, too! At long last, sharing a few pics from Parker and Emerson's joint Big 5 and Big 3, including the achieving of my sweetest goal for her - enjoying birthday cake (and she did, an entire big piece!!)
B is for Baby Steps.
Like the ones Holden started about a month ago, and quickly turned into full blown walking!! Like Macy, he's another early one and is already beginning the bumpy journey of learning to run and climb. It is so strange - but adorable - to see him toddling around the house with his older siblings. He is having a Blast! ^_^
B is for Backing Out.
Of decisions we took a lot of time to make. We were so excited to send Dawson and Emerson to the 3 hour morning pre-preK program at a local center dedicated to children with disabilities (but offering integrated classes!) but with Emerson never coming out of her last regression, her sleep at an all time low and the idea of her trying to stay awake all morning and engaged in an overstimulating, noisy environment... we called up our school district and said no thanks. Then, we found out Dawson had been put into a slightly older class (instead of an "early transition" class for 2 1/2 year olds, his only option in the morning was the 3-5 year old class) and after taking him for one day and spending the whole 3 hours with him, I was very disappointed - and a little shocked - by the reality of the class. Overbooked, tons of crying kiddos either very emotionally delayed and in their own little worlds or leaps and bounds older and further along developmentally than Dawson and huge safety issues for a 2 year old with DS. I basically served as his one-on-one aide all day, coming to his rescue on the playground when none of the teachers or aides would, and as a one-on-one aide wasn't part of his IEP as it wasn't seen as necessary given his moderate delays, another big discussion with Matt and a phone call to the school district to request we go back to in-home services. It was very stressful to switch gears so much but the program was not at all what we had envisioned for the little ones, so absolutely the right decision.
B is for Boys.
Our oldest two have had a very easy transition back to school - Parker started Kindergarten and it was just another day's adventure for him, no tears or worries and ready to go. So far things are going well and the boys love being able to ride the bus together and see each other at recess. They are pretty darn adorable standing at the end of our driveway, obscured by too-big backpacks, swaying from foot to foot and waiting impatiently. Cade has surprised and delighted us with how well he's already doing - his very first spelling test got him 9/10 correct and a new DVD for a reward! He still has moments of difficulty but overall it's clear to us that he's maturing and learning to cope with his challenges - so glad we stopped the medication!
B is for Beckett.
That's right, our ultrasound at 16 weeks to check on those darn Subchorionic Hematomas revealed we are, as suspected, having another beautiful baby boy!!! The kids are all excited - Macy is a bit disappointed it's not a girl, as was I for a while, but seeing as her daily mantra is, "Holden is so, so, SO cute!" she is looking forward to another darling boy in her life. Our regular level II ultrasound was on the 30th and all looks great and the hematomas are now gone! We are now half way there! All in all, things looked good, and these days, we can't ask for anything more! ^_^ Here are some pics of our newest cutie and his home! :)
Which is what we have been the last few weeks! Soccer for Cade and Parker, trying to get 5 kids ready for and off to a new school year, deciding not to send 2 of them (Dawson and Emerson), a prenatal appointment and ultrasound, the usual stuff. Everyone is doing really well, especially our school-goers (including our newest, Macy, who loves PreK!)
B is for Birthdays.
And Belated, too! At long last, sharing a few pics from Parker and Emerson's joint Big 5 and Big 3, including the achieving of my sweetest goal for her - enjoying birthday cake (and she did, an entire big piece!!)
B is for Baby Steps.
Like the ones Holden started about a month ago, and quickly turned into full blown walking!! Like Macy, he's another early one and is already beginning the bumpy journey of learning to run and climb. It is so strange - but adorable - to see him toddling around the house with his older siblings. He is having a Blast! ^_^
B is for Backing Out.
Of decisions we took a lot of time to make. We were so excited to send Dawson and Emerson to the 3 hour morning pre-preK program at a local center dedicated to children with disabilities (but offering integrated classes!) but with Emerson never coming out of her last regression, her sleep at an all time low and the idea of her trying to stay awake all morning and engaged in an overstimulating, noisy environment... we called up our school district and said no thanks. Then, we found out Dawson had been put into a slightly older class (instead of an "early transition" class for 2 1/2 year olds, his only option in the morning was the 3-5 year old class) and after taking him for one day and spending the whole 3 hours with him, I was very disappointed - and a little shocked - by the reality of the class. Overbooked, tons of crying kiddos either very emotionally delayed and in their own little worlds or leaps and bounds older and further along developmentally than Dawson and huge safety issues for a 2 year old with DS. I basically served as his one-on-one aide all day, coming to his rescue on the playground when none of the teachers or aides would, and as a one-on-one aide wasn't part of his IEP as it wasn't seen as necessary given his moderate delays, another big discussion with Matt and a phone call to the school district to request we go back to in-home services. It was very stressful to switch gears so much but the program was not at all what we had envisioned for the little ones, so absolutely the right decision.
B is for Boys.
Our oldest two have had a very easy transition back to school - Parker started Kindergarten and it was just another day's adventure for him, no tears or worries and ready to go. So far things are going well and the boys love being able to ride the bus together and see each other at recess. They are pretty darn adorable standing at the end of our driveway, obscured by too-big backpacks, swaying from foot to foot and waiting impatiently. Cade has surprised and delighted us with how well he's already doing - his very first spelling test got him 9/10 correct and a new DVD for a reward! He still has moments of difficulty but overall it's clear to us that he's maturing and learning to cope with his challenges - so glad we stopped the medication!
B is for Beckett.
That's right, our ultrasound at 16 weeks to check on those darn Subchorionic Hematomas revealed we are, as suspected, having another beautiful baby boy!!! The kids are all excited - Macy is a bit disappointed it's not a girl, as was I for a while, but seeing as her daily mantra is, "Holden is so, so, SO cute!" she is looking forward to another darling boy in her life. Our regular level II ultrasound was on the 30th and all looks great and the hematomas are now gone! We are now half way there! All in all, things looked good, and these days, we can't ask for anything more! ^_^ Here are some pics of our newest cutie and his home! :)
Wednesday, August 11, 2010
always something
Just a little update, as life is pretty busy right now, getting ready for school to start and a lot on my mind! We celebrated Parker's 5th and Emerson's 3rd birthdays last weekend and I have, as always, lots of great pictures to share. Hopefully I'll actually get them posted this week.
I had my NT scan last Friday and good news is baby looks great - NT measurement was only 0.7mm (great results are less than 2mm, so ours were pretty much fabulous), great heartbeat, baby measuring right on track and moving all over the place.
Bad news is that not only did the Subchorionic Hematoma (SCH) not resolve, but there is now a second one. They're both small, but I was really hoping it would be gone by now and instead it multiplied. I have a follow-up ultrasound in 4 weeks to check on them and until then need to take it easy and keep my stress to a minimum. (Apparently they didn't notice the fact I have 6 kids at home!!!) I am doing my best to follow the advice and not worry too much, but it's hard. If the SCHs don't resolve it will likely mean no homebirth as I'll have an increased risk of preterm labor and placental abruption. But of course my immediate concern is miscarriage. Again though, trying to stay hopeful and relaxed! :)
Here are some pics of our little Pinocchio-Monkey Child. It changes daily but for now I am thinking BLUE! ^_^
I had my NT scan last Friday and good news is baby looks great - NT measurement was only 0.7mm (great results are less than 2mm, so ours were pretty much fabulous), great heartbeat, baby measuring right on track and moving all over the place.
Bad news is that not only did the Subchorionic Hematoma (SCH) not resolve, but there is now a second one. They're both small, but I was really hoping it would be gone by now and instead it multiplied. I have a follow-up ultrasound in 4 weeks to check on them and until then need to take it easy and keep my stress to a minimum. (Apparently they didn't notice the fact I have 6 kids at home!!!) I am doing my best to follow the advice and not worry too much, but it's hard. If the SCHs don't resolve it will likely mean no homebirth as I'll have an increased risk of preterm labor and placental abruption. But of course my immediate concern is miscarriage. Again though, trying to stay hopeful and relaxed! :)
Here are some pics of our little Pinocchio-Monkey Child. It changes daily but for now I am thinking BLUE! ^_^
Saturday, July 17, 2010
lucky
It's been a busy couple weeks, lots of pics to share, hopefully I'll get them posted in the coming week! We took the kiddos to the ScienceCenter in Ithaca, including Em (last time she got to spend the day with the Outman family, as she previously got terribly overstimulated at the museum) and this time she did wonderfully! She was looking around, playing in the huge "red blood cell" ball pit LOL, and was generally happy and curious. Dawson, on the other hand, decided it was his turn to spin my perspective and when he wasn't trying to desperately launch himself back into the ball pit (who can blame him, everyone loves swimming in red blood cells!), he was whining or crying. Hopefully those two get better handling their emotions/sensory overloads as they get older! ^_^
So, for today's post ... it seemed like it was time to explain the crumb left at the end of my last post. ^_~
It maybe doesn't seem grand (or even surprising!) but to us it's pretty BIG, as always! The picture below was taken almost 3 weeks ago and I've been dying to post it. :)
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
That's right, we are expecting lucky #7! O_O
I'm due on February 19, so as if our fall/winter birthday lineup wasn't packed enough, we'll now have two sharing a month! ^_^ It wasn't quite planned and was actually more of a one month, let's-see-what-the-Universe-wants before calling our family complete and doing something to make that happen. I had an appointment on June 9 to go over my options and well, decided to test that morning before going. Needless to say, I got to cancel it. ^_^
We're feeling very happy and far too blessed and though going from 6 to 7 means big changes for us - a full-size van (!) and soon, some remodeling or looking into getting a bigger house - the positives of having another little life to enjoy far outweigh any negatives.
Do we know what causes it? Yes!
Don't we have too many? Maybe!
Are we crazy? Probably!
I'm 9 weeks today and so far all is going well. I'd had the ultrasound because of some spotting which was likely due to a very small Subchorionic Hematoma (SCH) and just a few days ago I got my new doppler in the mail and we found the heartbeat right away - 177 bpm, and that sound never gets less amazing! I've been feeling those early little flutters and popping corn sensations for a couple days. Luckily, I have only had mild nausea here and there and occasional headaches - easier even than Holden's pregnancy!
Although we've always declined all prenatal screenings other than the level II ultrasound around 20 weeks, and we still would never terminate, we have decided to have the NT scan this time around (just the scan, not the related bloodwork). While we'll accept whatever we are given, we're hoping to have some reassurance (or some advance notice) of any issues we might expect. I am planning another homebirth but this time, another stroke of luck - the NY Legislature just passed the Midwifery Modernization Act and I now have a midwife lined up! I'm happy to have the extra support this time around.
We recently told the kids and although Cade first gave an Oscar-worthy, "Oh no!" they were then all immediately thrilled, placing their orders for a boy or a girl and asking when the baby would be here. :) We're announcing to our families now, and are ever-grateful for having such a wonderful support system.
We are busy, sometimes precariously balancing everything it seems on the head of a needle, but still - very lucky indeed.
So, for today's post ... it seemed like it was time to explain the crumb left at the end of my last post. ^_~
It maybe doesn't seem grand (or even surprising!) but to us it's pretty BIG, as always! The picture below was taken almost 3 weeks ago and I've been dying to post it. :)
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
That's right, we are expecting lucky #7! O_O
I'm due on February 19, so as if our fall/winter birthday lineup wasn't packed enough, we'll now have two sharing a month! ^_^ It wasn't quite planned and was actually more of a one month, let's-see-what-the-Universe-wants before calling our family complete and doing something to make that happen. I had an appointment on June 9 to go over my options and well, decided to test that morning before going. Needless to say, I got to cancel it. ^_^
We're feeling very happy and far too blessed and though going from 6 to 7 means big changes for us - a full-size van (!) and soon, some remodeling or looking into getting a bigger house - the positives of having another little life to enjoy far outweigh any negatives.
Do we know what causes it? Yes!
Don't we have too many? Maybe!
Are we crazy? Probably!
I'm 9 weeks today and so far all is going well. I'd had the ultrasound because of some spotting which was likely due to a very small Subchorionic Hematoma (SCH) and just a few days ago I got my new doppler in the mail and we found the heartbeat right away - 177 bpm, and that sound never gets less amazing! I've been feeling those early little flutters and popping corn sensations for a couple days. Luckily, I have only had mild nausea here and there and occasional headaches - easier even than Holden's pregnancy!
Although we've always declined all prenatal screenings other than the level II ultrasound around 20 weeks, and we still would never terminate, we have decided to have the NT scan this time around (just the scan, not the related bloodwork). While we'll accept whatever we are given, we're hoping to have some reassurance (or some advance notice) of any issues we might expect. I am planning another homebirth but this time, another stroke of luck - the NY Legislature just passed the Midwifery Modernization Act and I now have a midwife lined up! I'm happy to have the extra support this time around.
We recently told the kids and although Cade first gave an Oscar-worthy, "Oh no!" they were then all immediately thrilled, placing their orders for a boy or a girl and asking when the baby would be here. :) We're announcing to our families now, and are ever-grateful for having such a wonderful support system.
We are busy, sometimes precariously balancing everything it seems on the head of a needle, but still - very lucky indeed.
Friday, July 02, 2010
all the king's horses
Ah, that time again. It's been a while since my last post and we've had many wonderful days, good days, okay days, stressful days, worried days, sad days. As we all do over the course of a few weeks, I suppose. ^_^ So this post might seem a far cry from the last one, a wild swing to the other side perhaps. But it is just one post, written on one day. And there will be more - hopefully lighter! - ones to come!
The boys finished school last week - they're both happy to have a break but of course already falling victim to The Big Bad Boredom. Matt and I decided to do a mini homeschool all summer so we have been trying to do an hour twice a day working with the older three, hopefully getting Cade more solid with his Kindergarten stuff (and close to reading!) and Parker and Macy more prepared for their new school experiences. It's tough with the three little ones but we've been working around therapy sessions and naptimes. So far I think we're off to a good start! :)
I spent 2 hours in IFSP meetings for Macy, Dawson and Emerson and at the end felt like I'd just been run over a few times by a larger version of Cade's yellow Power Wheels Jeep heh. Emerson's took the longest and at times I felt like laughing and other times like sobbing. She and Dawson will be starting an integrated pre-preK program at Handicapped Children's Association this fall. It's 3 hours 5 days a week and they'll get all their needed therapies there. At first there was some confusion about how Emerson would even attend because her therapists were recommending so many sessions per week, mostly individual, that she wouldn't have any time to be "in class." So they talked and altered their recommendations. She's also getting a one-on-one aide. Nearly everyone in the room had this pitying, horror-struck look on their face when the therapists and then me were talking about her various issues and problems - we had to have something put into her IFSP about her self-injurous behavior so she can be watched carefully around hard floors and walls. I kinda wished I'd brought her to the meeting so they could put a real face to the scary paperwork. But she wouldn't have done well for that long of a meeting.
Dawson needs less therapy, of course, and no one-on-one aide. He has finally started getting interested in breaking away from his momma so I am pretty excited for him!
Emerson had those few weeks of blissful progress - eating great, learning signs, being engaged, happy, playful, snuggly! - and then the little ones caught another upper respiratory infection, hers seemed to turn into a sinus infection, and it was all GONE. Just like that. Humpty-Dumpty and another Great Fall. And so far a course of antibiotics, though it cleared the illness, and two weeks of health, haven't brought her back. Now the littles are all getting a cold again, and she is slipping even further away from us. I should be used to this by now, I suppose, but somehow this time it has been even harder on me. I really thought we had finally found that corner we've been looking for and were whipping wildly, joyously around it.
Her eating is hit-and-miss, some good days, other really terrible ones. She has dropped about 1 1/2 lbs. So we made the call to the gastro yesterday. At this point, we think a g-tube is our only Next Step. Hopefully he agrees. Her love of banging her head into things and climbing up onto stuff and then throwing herself back like an Olympian off the high-dive have gotten worse. Her teeth grinding is back to where it was months and months ago. Her right cheek has looked swollen the last few days and she's been having blood on her lips which I assumed were from cracked lips or her usual cutting the edges of her sharp teeth on her lower lip. But last night while brushing her teeth I realized what was causing all of it - it appears she has been grinding her teeth on her inner cheek, with little molar marks on the soft skin left angry and red. I don't know how to stop it. Her sleeping is at its worst - she is up at least 2 to 3 hours in the middle of the night, every night, moaning and banging her head back on the mattress. I have sat with her while she slept for a while and even when she's asleep she tosses her head back and forth fast. I don't think she has sleep apnea, but we are going to talk to the pediatrician just in case. She takes a short nap each day but spends much of the day yawning or lying folded in half, listless. Melatonin doesn't work for her and when we asked the doc about a sleeping pill he looked at us like we'd asked for rat poison. No clue how to get her better rested.
I've also been talking with the cardiologist out in San Francisco who does the robotic heart repairs because well, we are trying to find any possible cause for her issues. He reviewed her records from our cardiologist and recommended she have surgery now rather than later, unless they want to "beef her up" - if only it were that easy as wanting to do that. Unfortunately, after talking further with him, we've realized surgery in California is impossible for us this year as it would require a 2 week stay. Matt doesn't have enough vacation time stored up to cover that and we cannot take that long without any income. And yeah, I'm really worried about her having major surgery right now with her current nutritional state.
So now I've had her records sent a cardiologist at NYU to see if he could perform a repair on her particular defect using the same daVinci machine the San Fran guy uses. Boston Childrens will be my next stop.
We still need to make appointments for her to have her orthotics redone (she just gets out of them and is making no progress with her ankle stability), opthamologist and a developmental pediatrician to finally, hopefully, have someone look at her issues and have a tiny inkling of what might be going on - Autism? Something else? She isn't supposed to see the ENT until the fall but we wonder if she's getting filled with fluid again. We are overloaded with her appointments right now and running out of useable vacation time for Matt - FMLA protects his job but does nothing about pay for the hours we lose with each appointment. So we try to spread them out a bit.
I feel like I'm chasing invisible bouncy balls down dark alleys - there are a lot of things we keep thinking IT could be, but never any answers. And no one in sight seems to have any.
I think I should feel overwhelmed with her issues right now but I don't think I'd use that word to describe how I feel. I feel distant from her issues, because I'm so used to it by now. And just puzzled over what to do next. For her. For our family coping with her issues.
We went to an absolutely beautiful park early in the week - lake, beach, tucked down in a valley of trees and rolling hills. There was no one there, it was quiet and warm but breezy. We had a picnic - Emerson even ate her mac n cheese sitting on the blanket next to me! - and the older three, Dawson and Matt went out to play in the sand on the beach. Emerson sat rolling a ball with me for a few minutes, then the wind picked up a bit and she started crying. And grinding. And soon we were sitting there, her screaming and grinding, me holding her on my lap with the blanket wrapped around her, shh-shhing and kissing her head. And Holden sat next to us, crawling around and babbling at me like nothing was amiss. And I watched the other kids playing happily. And she cried for the entire 20 minutes we remained there. And at one point I thought I might join her. But I held it in. And wondered how things would be for us as a family - going to an amusement park 3 hours away at the end of the month for Parker's birthday, we already know we will have to find someone to watch her for the day as she won't be able to handle it; going to the zoo, going to that lake to swim, going to soccer games in the fall when the older kids start up, going on long vacations - to Bethany Beach or Disneyworld or one day, maybe, Europe?
But I try not to dwell too much on those unknowns and just deal with what I know right now, what I can do right now, and hope we figure out the rest as we go along. And if we can't, that we will figure out what is best for everyone and just be happy with it.
We had some really exciting happenings for our family in the last few weeks too. But, this post has gotten long enough and I will save that for another day. ^_^
The boys finished school last week - they're both happy to have a break but of course already falling victim to The Big Bad Boredom. Matt and I decided to do a mini homeschool all summer so we have been trying to do an hour twice a day working with the older three, hopefully getting Cade more solid with his Kindergarten stuff (and close to reading!) and Parker and Macy more prepared for their new school experiences. It's tough with the three little ones but we've been working around therapy sessions and naptimes. So far I think we're off to a good start! :)
I spent 2 hours in IFSP meetings for Macy, Dawson and Emerson and at the end felt like I'd just been run over a few times by a larger version of Cade's yellow Power Wheels Jeep heh. Emerson's took the longest and at times I felt like laughing and other times like sobbing. She and Dawson will be starting an integrated pre-preK program at Handicapped Children's Association this fall. It's 3 hours 5 days a week and they'll get all their needed therapies there. At first there was some confusion about how Emerson would even attend because her therapists were recommending so many sessions per week, mostly individual, that she wouldn't have any time to be "in class." So they talked and altered their recommendations. She's also getting a one-on-one aide. Nearly everyone in the room had this pitying, horror-struck look on their face when the therapists and then me were talking about her various issues and problems - we had to have something put into her IFSP about her self-injurous behavior so she can be watched carefully around hard floors and walls. I kinda wished I'd brought her to the meeting so they could put a real face to the scary paperwork. But she wouldn't have done well for that long of a meeting.
Dawson needs less therapy, of course, and no one-on-one aide. He has finally started getting interested in breaking away from his momma so I am pretty excited for him!
Emerson had those few weeks of blissful progress - eating great, learning signs, being engaged, happy, playful, snuggly! - and then the little ones caught another upper respiratory infection, hers seemed to turn into a sinus infection, and it was all GONE. Just like that. Humpty-Dumpty and another Great Fall. And so far a course of antibiotics, though it cleared the illness, and two weeks of health, haven't brought her back. Now the littles are all getting a cold again, and she is slipping even further away from us. I should be used to this by now, I suppose, but somehow this time it has been even harder on me. I really thought we had finally found that corner we've been looking for and were whipping wildly, joyously around it.
Her eating is hit-and-miss, some good days, other really terrible ones. She has dropped about 1 1/2 lbs. So we made the call to the gastro yesterday. At this point, we think a g-tube is our only Next Step. Hopefully he agrees. Her love of banging her head into things and climbing up onto stuff and then throwing herself back like an Olympian off the high-dive have gotten worse. Her teeth grinding is back to where it was months and months ago. Her right cheek has looked swollen the last few days and she's been having blood on her lips which I assumed were from cracked lips or her usual cutting the edges of her sharp teeth on her lower lip. But last night while brushing her teeth I realized what was causing all of it - it appears she has been grinding her teeth on her inner cheek, with little molar marks on the soft skin left angry and red. I don't know how to stop it. Her sleeping is at its worst - she is up at least 2 to 3 hours in the middle of the night, every night, moaning and banging her head back on the mattress. I have sat with her while she slept for a while and even when she's asleep she tosses her head back and forth fast. I don't think she has sleep apnea, but we are going to talk to the pediatrician just in case. She takes a short nap each day but spends much of the day yawning or lying folded in half, listless. Melatonin doesn't work for her and when we asked the doc about a sleeping pill he looked at us like we'd asked for rat poison. No clue how to get her better rested.
I've also been talking with the cardiologist out in San Francisco who does the robotic heart repairs because well, we are trying to find any possible cause for her issues. He reviewed her records from our cardiologist and recommended she have surgery now rather than later, unless they want to "beef her up" - if only it were that easy as wanting to do that. Unfortunately, after talking further with him, we've realized surgery in California is impossible for us this year as it would require a 2 week stay. Matt doesn't have enough vacation time stored up to cover that and we cannot take that long without any income. And yeah, I'm really worried about her having major surgery right now with her current nutritional state.
So now I've had her records sent a cardiologist at NYU to see if he could perform a repair on her particular defect using the same daVinci machine the San Fran guy uses. Boston Childrens will be my next stop.
We still need to make appointments for her to have her orthotics redone (she just gets out of them and is making no progress with her ankle stability), opthamologist and a developmental pediatrician to finally, hopefully, have someone look at her issues and have a tiny inkling of what might be going on - Autism? Something else? She isn't supposed to see the ENT until the fall but we wonder if she's getting filled with fluid again. We are overloaded with her appointments right now and running out of useable vacation time for Matt - FMLA protects his job but does nothing about pay for the hours we lose with each appointment. So we try to spread them out a bit.
I feel like I'm chasing invisible bouncy balls down dark alleys - there are a lot of things we keep thinking IT could be, but never any answers. And no one in sight seems to have any.
I think I should feel overwhelmed with her issues right now but I don't think I'd use that word to describe how I feel. I feel distant from her issues, because I'm so used to it by now. And just puzzled over what to do next. For her. For our family coping with her issues.
We went to an absolutely beautiful park early in the week - lake, beach, tucked down in a valley of trees and rolling hills. There was no one there, it was quiet and warm but breezy. We had a picnic - Emerson even ate her mac n cheese sitting on the blanket next to me! - and the older three, Dawson and Matt went out to play in the sand on the beach. Emerson sat rolling a ball with me for a few minutes, then the wind picked up a bit and she started crying. And grinding. And soon we were sitting there, her screaming and grinding, me holding her on my lap with the blanket wrapped around her, shh-shhing and kissing her head. And Holden sat next to us, crawling around and babbling at me like nothing was amiss. And I watched the other kids playing happily. And she cried for the entire 20 minutes we remained there. And at one point I thought I might join her. But I held it in. And wondered how things would be for us as a family - going to an amusement park 3 hours away at the end of the month for Parker's birthday, we already know we will have to find someone to watch her for the day as she won't be able to handle it; going to the zoo, going to that lake to swim, going to soccer games in the fall when the older kids start up, going on long vacations - to Bethany Beach or Disneyworld or one day, maybe, Europe?
But I try not to dwell too much on those unknowns and just deal with what I know right now, what I can do right now, and hope we figure out the rest as we go along. And if we can't, that we will figure out what is best for everyone and just be happy with it.
We had some really exciting happenings for our family in the last few weeks too. But, this post has gotten long enough and I will save that for another day. ^_^
Thursday, May 27, 2010
under the big top
It's funny how pictures lit only by dim yellow fluorescence can give such a sense of reality - in motion, blurred, hard to catch. Our life, the Greatest Show on Earth! ^_^
Things have been busy-bordering-on-chaotic for the last few weeks; at least that's my story for my long silence and I'm stickin' to it. This blog has become my virtual Kitchen Counter O' Crap - you know, that one space in the kitchen you use to dump the dpzens of catalogs you seem to get in the mail each day, the PTA meeting notices, the coupons that will expire long before you get around to clipping them. I pass by that counter at least a hundred times a day and each time I stop, just for half a second, and I think Wow, I really should clean that... only to be distracted by the microwave beeping, a baby crying, a poopy diaper burning up in my hand and begging for the trash can. And so it's left another hour, another day, and it keeps getting more and more cluttered until you realize how much it has entered daily conversation. Where is ---?
I don't know, somewhere on The Counter.
And so I have felt so behind here, so caught up in each day that the thought of going back and editing and organizing and rearranging the happenings of the previous one leaves me with a yucky taste in my mouth.
But today is a special day for our circus and I couldn't deny it was time to put things in their place.
Cade. What to say for Cade? He was doing great for a while, gently medicated on his 5mg of Adderall XR. His teacher was incredibly impressed, the usual storm of his behavior had calmed to a light drizzle. And then... ah, there's always an "and then" isn't there? Suddenly his concentration at school was scattered, his violent outbursts at home more frequent. Exasperated, we asked Dr. Dum Dum (I mean, the pediatrician) if we could try to increase his dose to 10mg. See what happens. The last few days have been puzzling; upsetting. He has been cold, aloof, intense and angry - some ultra-introverted goth teen trying to act like he doesn't need nothin', no one. Still hoping it's just a temporary glitch as his brain processes this new amount of Stuff and he will eventually find a happy balance, but really, I'm beginning to doubt his diagnosis. I really think he might end up falling clumsily somewhere on the high end of the Austism Spectrum and I know it's time to get him in to that pediatric holistic-medicine psychiatrist we've had our eyes on and I admit I'm a little afraid to do so.
Today I did something maybe a little strange, though I know many other parents who have done it - I took some of his medication myself (a double dose, though still probably not enough based on my weight) to see what was what. And it was strange; I felt I had jumped into his sneakers for a couple hours while my body burned through the medication and I was vaguely aware of the fact that I felt very calm, very serious, very cold and far away. Sure, I got the living room clean in half as much time as it usually takes me. But I felt a little... robotic. And it scares me to think that is how Cade feels each day. I want to find a med-free way to help him do his best and I am hoping we can do that this summer, free from the annoyance of well-meaning teachers who think every kid should be doing So and So by Such and Such time.
A friend on one of my message boards posted a link to a pretty awesome article regarding new research in ADHD and other behavior issues - it's pretty common sense when you think about it, but it is always nice to see "problems" looked at through a positive lens. I confess I sometimes wonder if I am an Orchid Kid myself. Cade and I have a lot in common.
Parker is doing great, as he tends to do. :) He was discharged from speech therapy last month with articulation in average range at last and expressive/receptive above his age. He just had his Kindergarten screening this week and did great - he is pretty excited about the new adventure he'll be taking on in September!
I don't think I've ever mentioned it, but the school district here is pretty fabulous and we are lucky to have an excellent Universal PreK program. His school has an annual Literacy Day where the kiddos get to bring their fave book and dress as their fave character and then parade around for some pretty cute pictures. Parker was adorable and can I just say it's amazing how much a $10 ridiculously large toothbrush can induce giggles in a 4 year old? ^_^
Scissors. Ah, how I hate scissors. My sweet little Macy had an unfortunate incident with a pair last week and her finally-growing wisps of hair were shaped into the most lovely mullet you can imagine. $13 (with tip) at my favorite day spa later and she has a cute bob that will keep her cool for the summer. She is still working on potty-training (ugh) and is ever the Little Mother. I'm convinced she will grow up either to be a Physical or Occupational therapist or raise a whole brood of kids (2 boys and 13 girls, according to her ^_~). She continues to be smart, silly and affectionate and I will miss her terribly when she starts PreK this fall. We are making huge progress with her speech articulation issues, though she will still get services at least until Kindergarten, and her receptive/expressive scores are even relatively further beyond-age than those of her big brother.
Dawson; My Dawson.
Oh, my little boy is growing up. He is walking. Not just walking occasionally, for X number of feet. He is walking all over, opening cupboards, pulling out pans, seeing what treasures he can reach and pull down from that aforementioned kitchen counter. He is ready, he is set, he is off! He is kicking his red sensory ball all over the living room and yelling, "I got it!" to no one in particular, all grins and joy at his newfound freedom. Joy. If he were a girl it would be his middle name.
Gorgeous boy, littlest one - Holden is just flying along. He is sitting up on his own, getting down onto his tummy on his own and melting my heart by the hour all on his own. The other day I was struck for a minute as I watched him sitting on the living room floor, laughing at the antics of his big siblings and munching on Gerber cheese puffs and sipping juice from a straw - where did my baby go? I can see the anticipation in his eyes when he watches all the action around him and while part of me can't wait to run with him, the other part wants to keep him here, snug against my chest. No matter how hard I try, I can never freeze these moments in my mind; perhaps I just have an awful memory or it's simply a side effect of having a large family - but oh how I wish I could Remember This.
(Don't mind the black eye courtesy of a meeting with the Corner of the slate planter in our living room. Ah, the joys of cruising.)
I saved the best for last.
One year ago today Emerson was being Gotcha'd.
And for a while there I thought we would be trapped forever in our own worlds, never to meet except in silent passing, the last few weeks have found Emerson ... well, Found.
She had an upper endoscopy about a month ago which revealed no physical abnormalities but did show inflammation from reflux and h. pylori bacteria. After a massive dose of antibiotics and beginning a course of antacid medication and a few days of me and Matt in a panic over the idea of a G-tube in our future, she just started eating. A lot! And though she still has strong aversions and preferences, she has opened herself up to a few new tastes and textures - she even imitates me when I chew crazily, chanting "Chew chew chew" like an overachieving train. She is trying. Finally. And she went from 20 lbs to 22 lbs in 2 weeks. She was always a stubborn bratty little thing - now she's a Chunky stubborn bratty little thing!
The best part of all - she's WITH US. Her days of staring into space are long gone. She is with us, always. Even when she gets tired, hungry, thirsty or otherwise miserable, though she still will sometimes toss her head into the wall like croutons into a salad, she is still WITH US. And she is learning signs like crazy.
Baby.
Eat.
Drink.
More.
All done.
Sleepy.
My turn.
Dada.
And my favorite - momma.
She has even combined a couple signs and above all, the girl has Attitude. When she's irritated, she lets you know. And though sometimes her strong emotions take me aback, what a difference from the far-away princess we were entertaining just a few short months ago.
It took long enough, but I am so grateful It came. The moment when I realized hey, yeah, she fits in this wild circus of ours. She is the tightrope walker, teetering somewhere between falling and soaring, and I am at last the grateful net waiting beneath her still-size-2 feet, enjoying the Show.
Subscribe to:
Posts (Atom)