This past week we had a great time with friends visiting! They have kids around the same age as our kids, and a little one with Ds to boot :). We spent a day at our Down syndrome picnic, went to the zoo, I took care of a few doctor's appointments for kids, we drove out to the beaches and to see the old shuttle pads, and they took in a few sights of their own!
This Friday Wesley, Emma, and Micah all went to the ophthalmologist and they each got new scripts. Micah's script is going to be a little LESS than his previous, but Emma's and Wesley's have both increased. We'll be headed to WalMart next week some time to order new frames for all the kids that need them. Our warranties are up on the old frames, and Micah broke his second pair a week ago at school... So it's time!
We are now on Spring Break! After a wonderful week with friends, now we have an additional week with just the family :).
I'm thinking another trip to the zoo might be in store, and of course that long trip to WalMart optical. Today has started out with horse therapy, a quick trip through McDonald's for lunch, and a fun afternoon of RELAXING and PLAYING!
Believe it or not, our house has been SUPER quiet today. Maybe it's a relative quiet... after having 18 people in the house and today there are 9 of us (Michael's working)? :)
We had such a great time with our busy house and all the kids this past week, and my children's GOOD behavior on the tails of them leaving is a huge testament to how great our friends were with helping us stay in routine a bit and keep the rules going for our own kids even though our numbers almost doubled.
Looking forward to another great week... What kind of fun things do you do with family during your spring break from school??
The Cornish Family... Chasing God's calling...
Saturday, March 24, 2012
Wednesday, March 21, 2012
Well, isn't that sweet? Hmm...
It appears we have a new route of traffic to this blog... It's from a blog that I won't be linking over to, but which listed this post: http://cornishadoptionjourney.blogspot.com/2012/02/brand-new-adventure.html as a "blog gag me" post. A listing of 10 blogs (this time... it's an ongoing series to my understanding) that they say they list because "readers have sent us (and we have happened upon) so many adoption blogs and blog entries that are offensive, dangerous set-ups for the children, unethical, illegal and/or crazy.".
It's interesting to me that they point out that we're 30, are about to be parents of 9 and some of our kids have special needs, and we are homeschooling. They also point out an association with an organization we're no longer associated with, but I guess they have most of their facts straight anyway.
What strikes me as comical is that that's all they have to say about our family. Maybe by reading that people would assume it "shouldn't work" and because of those things we're to be criticized?
Regardless, I went to the site, read what they had to say about us (leaving most of the rest of the site untouched...) and posted this comment on their post:
Someone sent me this link saying I should be outraged that my blog is being 'smacked' on. Quite honestly, I don't care :). My blog, Cornish Adoption Journey, tells about our life for friends. Yes, we're expecting a new baby, yep, we have a big family, and yes, we're young :). We do homeschool some of our children who have no 'place' in the school system... (which we did try, and I wish it worked because, well, wouldn't that make life easier?). Unfortunately, some of your facts are wrong because I'm no longer associated at all with the organization you have attached to my blog. And I'd say there's one other thing missing, which by the way this blog is intended to be rude and "bashing" people I think is probably another strike against us in this type of blog, however for us it's a big positive in our lives. We follow God's calling in everything we do, and He is faithful. That doesn't mean that we go blindly in to things or adopt with the expectation that "God will do it even when we can't." However it means that we don't jump on to a bandwagon as we have seen many times without not only a lot of thought and prayer but also time considering exactly how it would work. Our children are all healthy, happy, are doing well physically and are developing at a good pace considering their challenges. They are well socialized, are cared for medically, and most importantly of all, they are well loved, have plenty of attention and have the love of a family and the support of a church, community, and extended family! We are so blessed to be able to be 30 year old parents of 9 children, many with special needs! Oh, and that bachelor's degree I have in education certainly helps out in the way of homeschooling my children :). I haven't checked out this blog past this post that was emailed to me by "concerned friends" that were so upset we were listed, however I thought I'd at least give you the rest of the story! I'm sure the rest of our family story is most likely just more to be 'cracked' on, but one of the parts of doing something that's outside of the social norms because you feel called to do it (and if I may say.. do it well!), we expect to have people question our ability to do what we do. If we weren't doing it every day, we might question someone else in their ability to do it as well! Thankfully, we also know other families that are successfully raising large special needs adoptive families and when we continue to trust and lean on God, we really can do it! Phil 4:13... James 1:27... Jer 29:11... those are all pretty good places to start in understanding us. But if those don't mean anything to you, then it's likely our family and our lives and our reasons for doing what we do will be taken in the same way. I hope you'll soon see the Blessings of adoption, rather than passing judgment on those of us that are living it all :)
If you're here linked over from the other post, welcome :). I hope you had a chance to read my comment on the other blog, however wanted to repost it here in case it may have been missed.
Blogging is our way of sharing our family with our friends (and strangers LOL) that want updates on what's going on with all of us. It's also been a wonderful resource to us because we can ask questions here and often have a wide array of answers from people who have experience in areas we don't! We expect people not to 'get' us until they know us. But that doesn't change who we are, what we do, or why we do it! :)
Tuesday, March 20, 2012
Phenol?
At our neuro appointment today the neurologist suggested we try phenol nerve blocks on conjunction with botox. This would be a sedated procedure at the hospital instead of botox injections in the office.
Anyone know much about this or experienced it with a child? We haven't scheduled anything yet... I'm going to call when we decide whether to do just botox again or add the phenol this time...
Thanks!
Friday, March 16, 2012
The agenda
The agenda yesterday:
7:30-3pm Field Trip with Kristopher's class to the Orlando Science Center
3-4pm Babysitter hung out so I could make peace in our laundry/closet room and get some other things together in the house
4-5:30pm Speech therapy for 3 kids (thankfully at our home!), gas company in and out to remove a propane tank and re-hook the second one so we can start construction... hopefully SOON!, and babysitter stuck around because of the craziness of everything going on :) (thanks Katie!)
5:30-6:00 Dinner with Mike's parents (thanks for picking up the pizza!)
6:00-7:30 Hanging with grandma reading stories and grandpa and Mike moved Wesley's adaptive bunk bed to his new room with Micah and Kristopher (Wes was in the room that will be turned in to a bathroom... soon..!).
7:30-9:30 Our attempts at bedtime including moving Lynae (who didn't want to sleep alone after Wes was moved!) out to the girls' room on the porch in Micah's old bed and then trying to calm a GIGGLING room of little girls for an hour and a half after that!
The agenda today:
11am Meet other moms at Target
5:30 Buy mattresses at Sam's Club
Thankful for a restful Friday!!! :) :)
7:30-3pm Field Trip with Kristopher's class to the Orlando Science Center
3-4pm Babysitter hung out so I could make peace in our laundry/closet room and get some other things together in the house
4-5:30pm Speech therapy for 3 kids (thankfully at our home!), gas company in and out to remove a propane tank and re-hook the second one so we can start construction... hopefully SOON!, and babysitter stuck around because of the craziness of everything going on :) (thanks Katie!)
5:30-6:00 Dinner with Mike's parents (thanks for picking up the pizza!)
6:00-7:30 Hanging with grandma reading stories and grandpa and Mike moved Wesley's adaptive bunk bed to his new room with Micah and Kristopher (Wes was in the room that will be turned in to a bathroom... soon..!).
7:30-9:30 Our attempts at bedtime including moving Lynae (who didn't want to sleep alone after Wes was moved!) out to the girls' room on the porch in Micah's old bed and then trying to calm a GIGGLING room of little girls for an hour and a half after that!
The agenda today:
11am Meet other moms at Target
5:30 Buy mattresses at Sam's Club
Thankful for a restful Friday!!! :) :)
Tuesday, March 13, 2012
"I sued my OB for millions because I would have rather aborted you."
I realize that sounds harsh, but that is the REALITY for one child in Oregon. Her parents sued their OB, and WON 2.9 million dollars because the OB didn't offer to abort their baby. They weren't told ahead of time that their baby may have Down syndrome, and the parents then filed a wrongful birth lawsuit.
How would you like to grow up knowing that your parents said in a court of law that if they'd have known you would be who you are... They would have never allowed you to be born? That if they'd have suspected that you wouldn't be their image of perfect, that they would have aborted you?
How about the older brothers, since the parents claim that their daughter is "too retarded to know what's going on"? Are the brothers going to just not take notice to the idea that their parents would rather have killed their sister than have her be born? Will they, too, grow up with the idea that she is of lesser value as a person? That's ctainly the message these parents are sending...
Every year in the United States over 90% of the parents that receive a prenatal diagnosis of Down syndrome choose to abort their baby. There isn't any statistical data to show what percentage of all the babies withDown syndrome (those diagnosed prenatally and those not) this represents, but it is a significant number.
What message does a wrongful birth lawsuit send to a generation of people striving for perfection, and feeling like taking the life of a child is better than going through another few months of pregnancy and either raising the baby or choosing another family to raise him or her?
http://www.lifenews.com/2012/03/13/couple-wins-suit-doc-didnt-suggest-aborting-down-syndrome-baby/
How would you like to grow up knowing that your parents said in a court of law that if they'd have known you would be who you are... They would have never allowed you to be born? That if they'd have suspected that you wouldn't be their image of perfect, that they would have aborted you?
How about the older brothers, since the parents claim that their daughter is "too retarded to know what's going on"? Are the brothers going to just not take notice to the idea that their parents would rather have killed their sister than have her be born? Will they, too, grow up with the idea that she is of lesser value as a person? That's ctainly the message these parents are sending...
Every year in the United States over 90% of the parents that receive a prenatal diagnosis of Down syndrome choose to abort their baby. There isn't any statistical data to show what percentage of all the babies withDown syndrome (those diagnosed prenatally and those not) this represents, but it is a significant number.
What message does a wrongful birth lawsuit send to a generation of people striving for perfection, and feeling like taking the life of a child is better than going through another few months of pregnancy and either raising the baby or choosing another family to raise him or her?
http://www.lifenews.com/2012/03/13/couple-wins-suit-doc-didnt-suggest-aborting-down-syndrome-baby/
Monday, March 12, 2012
Our bathroom sanity saver
So of course I shared already tonight about our hair cut experience and my thought was... Now an hour of quiet and being nonproductive! Well, that almost worked. For about 20 minutes I sat and had a mint chocolate chip and caffeine free coke float... Then I remembered the project that I bought pieces for that was on the dining room table.
This is a half height shower curtain with two cups that hold it up (though it also pressure mounts but that makes it easier!). Not a big project, but a huge help!
When showering Wesley, as I experienced just a couple hours ago, we get soaked. Water comes together in a stream under his shower seat then hits the floor with a resoundong splash on the tile. If we are planning to go out again that day its difficult to get Wes washed without first changing our clothes to something we can get wet in.
This rod and curtain will be able to stay up most of the time except when Kris is taking a shower. My reason for the cups for the rod is so that Kris can rehang it on his own without us being concerned that if one of the kids touches it it may fall on them.
One more project DONE! I will post our bedroom and closet transformations eventually... It's been a busy 3 days of house projects!
This is a half height shower curtain with two cups that hold it up (though it also pressure mounts but that makes it easier!). Not a big project, but a huge help!
When showering Wesley, as I experienced just a couple hours ago, we get soaked. Water comes together in a stream under his shower seat then hits the floor with a resoundong splash on the tile. If we are planning to go out again that day its difficult to get Wes washed without first changing our clothes to something we can get wet in.
This rod and curtain will be able to stay up most of the time except when Kris is taking a shower. My reason for the cups for the rod is so that Kris can rehang it on his own without us being concerned that if one of the kids touches it it may fall on them.
One more project DONE! I will post our bedroom and closet transformations eventually... It's been a busy 3 days of house projects!
Why I believe I would be an excellent sheep shearer
If I ever needed to find work outside the home, I'm pretty sure that I've found a line of work where my experience would really pay off.
Of course most of you realize that this must mean that I cut someone's hair today, and likely are wondering who... and whether this is a plural remark or not. Let me assure you that I only had the stamina to handle one today, which is the only reason why this blog post will not be filed in the 'resume material' along with the ability to clean up poop off of all surfaces in a bedroom, the ability to get microscopic sticks out of shoes, and my innate sense of smell which can not only tell from three rooms away that someone is dirty, but can tell exactly who it is that the scent arose from.
I'm hoping that it being 7pm when I began this project, me being 19 weeks pregnant, the fact that I did a full day and a half of homeschooling with four kids and a cranky 2 year old, picked up the house, did dishes, and somehow managed to make dinner (never mind the small kitchen fire... Yes I realize now that you shouldn't put the foam meat packaging on the other burner while putting said meat in to the pan... then turn on the wrong burner... but that didn't occur to me until after the flames or I wouldn't have turned on the wrong burner in the first place...), and the ensuing headache after that fiasco... followed by dinner for 10, pj's, medicines, and THEN the start of our hair cutting escapades.
I'm also not sure why it was that Wesley (the victim of the evening) decided it was such an awful thing for HIM to get his hair cut. I'm pretty sure all of the work and pain were mine, however he was the one screaming through it all! After all, I managed to hold him up with one hand (he doesn't sit at all and has on and off head control, so I held him at an angle over my towel which miraculously did catch 99% of the hair that came off of his head...), then hold the buzzer with the other hand, and keep his flying fists from hitting me with a third... wait. Well, not sure where that hand came from since I was doing this by myself (while Michael was cutting branches down in the last of daylight-- another much needed job that had to be done!). But those of you who are moms know that sometimes an arm just grows out of nowhere when you really need it :).
Wesley is pretty aware of things and understands largely what is going on around him. He's great at helping with tasks that he can and cooperating with those which he doesn't have the physical ability to help with. This, however, is not a task which he will either help or cooperate with! I know he was angry and not scared due to his body's response to my cutting his hair (he did NOT attempt to shake his head like a cornered animal... which I'm sure he learned from somewhere... nor did he attempt to bite me even a single time), but it was obvious that he was very angry with me for messing with him in this way. Who knows, maybe he LIKES long hair?
Unfortunately for him, as long as he rubs his head on every surface it comes in contact with (mattress, rugs, tile, or even his wheelchair and other supportive seating) and continues to have the spot of "almost bald" across the back of his noggin, he will continue to get short cuts.
I was able to successfully shear, er... buzz... his head leaving a remarkably 'good looking' child after all of the trauma caused by not only the cutting... but then the trimming around the ears and neck and of course the necessary shower following the escapade.
Now, if only I had the energy to tackle the other 4 boys whose hair needs some attention, I would feel like this post was real 'resume material'. Unfortunately, I turned down my husband's question of whether he was next to get his cut tonight after taking an inch worm off his shirt and suggesting he shower first (remember, he was outside cutting down branches...) and he decided to go for a long bike ride before he used up extra water. The other three boys are thankfully already in bed, therefore giving me a 'pass' at having to contemplate having any of them be next :).
Of course most of you realize that this must mean that I cut someone's hair today, and likely are wondering who... and whether this is a plural remark or not. Let me assure you that I only had the stamina to handle one today, which is the only reason why this blog post will not be filed in the 'resume material' along with the ability to clean up poop off of all surfaces in a bedroom, the ability to get microscopic sticks out of shoes, and my innate sense of smell which can not only tell from three rooms away that someone is dirty, but can tell exactly who it is that the scent arose from.
I'm hoping that it being 7pm when I began this project, me being 19 weeks pregnant, the fact that I did a full day and a half of homeschooling with four kids and a cranky 2 year old, picked up the house, did dishes, and somehow managed to make dinner (never mind the small kitchen fire... Yes I realize now that you shouldn't put the foam meat packaging on the other burner while putting said meat in to the pan... then turn on the wrong burner... but that didn't occur to me until after the flames or I wouldn't have turned on the wrong burner in the first place...), and the ensuing headache after that fiasco... followed by dinner for 10, pj's, medicines, and THEN the start of our hair cutting escapades.
I'm also not sure why it was that Wesley (the victim of the evening) decided it was such an awful thing for HIM to get his hair cut. I'm pretty sure all of the work and pain were mine, however he was the one screaming through it all! After all, I managed to hold him up with one hand (he doesn't sit at all and has on and off head control, so I held him at an angle over my towel which miraculously did catch 99% of the hair that came off of his head...), then hold the buzzer with the other hand, and keep his flying fists from hitting me with a third... wait. Well, not sure where that hand came from since I was doing this by myself (while Michael was cutting branches down in the last of daylight-- another much needed job that had to be done!). But those of you who are moms know that sometimes an arm just grows out of nowhere when you really need it :).
Wesley is pretty aware of things and understands largely what is going on around him. He's great at helping with tasks that he can and cooperating with those which he doesn't have the physical ability to help with. This, however, is not a task which he will either help or cooperate with! I know he was angry and not scared due to his body's response to my cutting his hair (he did NOT attempt to shake his head like a cornered animal... which I'm sure he learned from somewhere... nor did he attempt to bite me even a single time), but it was obvious that he was very angry with me for messing with him in this way. Who knows, maybe he LIKES long hair?
Unfortunately for him, as long as he rubs his head on every surface it comes in contact with (mattress, rugs, tile, or even his wheelchair and other supportive seating) and continues to have the spot of "almost bald" across the back of his noggin, he will continue to get short cuts.
I was able to successfully shear, er... buzz... his head leaving a remarkably 'good looking' child after all of the trauma caused by not only the cutting... but then the trimming around the ears and neck and of course the necessary shower following the escapade.
(yes, he easily forgives and sat giggling and tickling with me after his evening's torture. He's photosensitive (light bothers his eyes) so it's hard to get a good shot of him in the evening with his eyes open!)
Now, if only I had the energy to tackle the other 4 boys whose hair needs some attention, I would feel like this post was real 'resume material'. Unfortunately, I turned down my husband's question of whether he was next to get his cut tonight after taking an inch worm off his shirt and suggesting he shower first (remember, he was outside cutting down branches...) and he decided to go for a long bike ride before he used up extra water. The other three boys are thankfully already in bed, therefore giving me a 'pass' at having to contemplate having any of them be next :).
Thursday, March 08, 2012
Isn't God Amazing??
From an orphanage in Bulgaria, Annikah became a Bedford in December 2011. In February 2012 her family learned that she had a progressive disease called Moyamoya, which restricts blood flow to the brain. A diagnostic angiogram and two brain surgeries were her expected future to reroute the arterial flow in the brain.
Today was Annikah's angiogram, and the results are nothing less than... AMAZING...
http://www.only1mom.com/2012/03/annikahs-angiogram.html
Today was Annikah's angiogram, and the results are nothing less than... AMAZING...
http://www.only1mom.com/2012/03/annikahs-angiogram.html
Ultrasound was today and it's a...
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SURPRISE! :)
Apparently he or she was being shy, so we weren't able to tell the baby's gender. We'll likely have a level 2 u/s done in about a month and hopefully will learn the baby's gender at that time. In other news, the baby's measurements were all right on or a little ahead of schedule, but within about 4 days for the most part. I'm back up to my pre-pregnancy weight, which is a good thing too :). We go back to the doctor on Wednesday for a 19 week checkup and will schedule the next ultrasound somewhere around 20-22 weeks.
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SURPRISE! :)
Apparently he or she was being shy, so we weren't able to tell the baby's gender. We'll likely have a level 2 u/s done in about a month and hopefully will learn the baby's gender at that time. In other news, the baby's measurements were all right on or a little ahead of schedule, but within about 4 days for the most part. I'm back up to my pre-pregnancy weight, which is a good thing too :). We go back to the doctor on Wednesday for a 19 week checkup and will schedule the next ultrasound somewhere around 20-22 weeks.
Tuesday, March 06, 2012
Well, here we are!
Our day one of homeschooling has come and gone for Aleksa, Emma, and Wesley! It actually went REALLY well. I was amazed at how much Aleksa and Emma both participated. Brianna and Lynae were both excited which is a VERY good thing, since I was a little concerned that they'd feel like there was something wrong with the other kids being home when they aren't usually. I'm thinking that may rear its head in a few weeks when they realize it's permanent, but... it was inevitable :). We worked on leveled readers and comprehension questions, word wall words and the kids' own names. Most of it was aimed where Aleksa, Wes, and Emma are... so going to have to adapt or find another time to work on more things with Brianna (and Lynae...). Regardless, it was a great day with other activities, Bible time, etc. A good start.
When I was planning out lessons I planned on field trips with the other kids, doctor's appointments for the kids as well as OB appointments for me... what I totally overlooked was Lynae and Brianna going to the church the two mornings that they go! LOL! So, I am going to rework some things so that Tues/Thurs I work more on things that are on level for the three kids that are home those days and Monday/Friday focus more on what the other two girls are doing, with Wednesday being a mix (since this week and next there are field trips/ appointments for kids or myself...).
Tomorrow is Micah and James' trip to the zoo for the Very Special Arts Festival! They'll be doing art projects that are set up at stations all over the zoo! This is our fourth year attending and it's always a lot of fun! Thursday Michael and I will head over to the obstetrician and take a peek at baby #9. Maybe... just maybe... we'll learn whether our next little person is a boy or a girl. Any guesses? :) 50/50 chances... LOL
When I was planning out lessons I planned on field trips with the other kids, doctor's appointments for the kids as well as OB appointments for me... what I totally overlooked was Lynae and Brianna going to the church the two mornings that they go! LOL! So, I am going to rework some things so that Tues/Thurs I work more on things that are on level for the three kids that are home those days and Monday/Friday focus more on what the other two girls are doing, with Wednesday being a mix (since this week and next there are field trips/ appointments for kids or myself...).
Tomorrow is Micah and James' trip to the zoo for the Very Special Arts Festival! They'll be doing art projects that are set up at stations all over the zoo! This is our fourth year attending and it's always a lot of fun! Thursday Michael and I will head over to the obstetrician and take a peek at baby #9. Maybe... just maybe... we'll learn whether our next little person is a boy or a girl. Any guesses? :) 50/50 chances... LOL
Wednesday, February 29, 2012
A brand new adventure...
I've learned to live one day at a time. Not because tomorrow's something to be feared or not to be planned for, but because if you cannot enjoy TODAY, then looking for tomorrow will do no good.
In the same sense, looking out thirty or fifty years is absolutely necessary to plan for our future and for our children, however looking forward 6 months to plan for our immediate is far enough.
In six months I will be a 30 year old mother of nine with six children with special needs. That's a wonderful blessing in itself! In addition I will be the 'lead teacher' for my classroom of seven children ages 3-10, six with special needs. Yes, those are our very own kids... who we will be homeschooling! Kristopher will continue traditional school and I have no doubt that in 6 months I will still be a happily married wife to my wonderful husband :).
Six months is enough to look out to. Looking further than that on a regular basis will make me a bit cross eyed and may begin to hyperventilate!!
Our homeschooling adventure began this past September with Brianna and will broaden on Monday when 3 more of our children begin their home education. James, Micah, and Kristopher will finish out this year in public school.
What a wonderful and FRIGHTENING time this is. We're so very glad to be walking the path that God's led us on, even if it appears to be along the side of a cliff. We've walked that cliff-side before and with God's guidance we never have to fear the edge.
Jeremiah 29:11 "For I know the plans I have for you," said the Lord. "Plans to prosper you and not to harm you. Plans to give you hope and a future."
Philippians 4:13 "I can do all things through Christ who gives me strength."
We've been contemplating this for quite some time. Now's the time that God said "GO." He's faithful to provide at the same time, and we have a complete curriculum ready to go thanks to a good friend. We also have support for upcoming appointments such as field trips for our other children so that we can continue to be active with them while our other kids are adequately cared for.
It's a brand new, scary, and wonderful adventure that God's taking us on. One day at a time. Enjoying each moment, but knowing that at the end of a rough day... there's usually a brand new one waiting for us on the other side :)
Thursday, February 23, 2012
Anyone have experience with this?
We're running in to some more closed doors as far as finding out if/what is going on with our oldest and newest child, Aleksa. There are tons of cues throughout EVERY day that suggest that she isn't hearing well. She won't respond when in a different room, even just 10 feet away from us, unless it is said VERY LOUDLY to her... and then we're still not sure she's hearing WHAT we're saying, just is taking a cue that us yelling to her with her name attached (she does respond well to her name) means that she should do something. She also can look at us while we tell her something that we know she understands, like "take your shoes off" and sometimes will do it (generally this is when it's inside of her realm of a routine), but just as often will sit and look at us with a confused look on her face. We can say it over and over, but until we LOOK at her shoes, sign "shoes off" or point to her shoes, something that physically signals what we're asking, she doesn't appear to hear what we're saying.
It's strange, because some days she may do exceptionally well with minimal amounts of physical signing, pointing, and direct hands-on prompting necessary. Other days, it seems she doesn't hear anything all day long. It's also difficult because she has VERY GOOD adaptive behavior. Imagine this scenario: You're 5 years old and someone drives you to a new "place to live" and drops you off with 80 other children all of whom are older than you (you used to be the oldest in your small group of kids you lived with) and many are as old as your previous caretakers. You quickly find that someone will physically punish you for not following "the crowd" and doing what everyone else is doing. So you figure out pretty quickly that when you see everyone going to do something that you, too, should go do it. You learn that when someone gives you a direction, even one you don't understand at all, that you look around and try to figure out what they're referring to, and if you can do something-- anything-- you try it. This was Aleksa's reality in the institution. You conform, figure out the routines, and if someone directs something at you, you try to figure out what they meant.
In new situations, though Aleksa will also frequently try to get away with whatever she can... she tends to try to figure out what wo't get her in trouble. She WANTS to understand. She LIKES to help. She will, when in a mood to do it, TRY to please at all cost. However she will also look at us and be obviously searching to try to figure out what we're saying... and be unable to even when it is a very simple direction that she knows how to do and was able to do a day or two prior...
So... everything points to hearing. Problem being, She has had an OAE that she failed. Then she failed the Tympanogram in an "unusual pattern" and the ENT asked if we wanted to try tubes in her ears. We said YES, if that could be the issue, let's take care of it by all means. She got tubes. Nothing has improved (and that was a month ago...). She also had an ABR done while she was sedated. The ABR showed "normal to low-normal hearing with her left being a little worse than her right". The doctor said that's fine, shouldn't be any big deal, and come back again in 6 weeks for another OAE and exam. We saw him this morning.
I asked his opinion of what he thinks her response, or lack of response more appropriately, was due to. I will share his answer, then I'll share what he appeared to be saying :). He said that it's probably just auditory processing and they can't test that in a nonverbal child, so there's nothing else we can do. What he's implied in the past and appeared to be saying this time as well was this: Your child is mentally retarded and can't process words because of it. She's not going to learn to, so why are you wasting your time?
I understand auditory processing. One of my siblings has issues with it and has had to overcome a lot to be able to do well in some areas, but as he went through school with this "learning disability" as it's termed, he also was in the gifted student program. Auditory processing has little to do with cognition or ability to think. It is a real and diagnosed processing difficulty that occurs in people of ALL levels of intelligence.
I'm not trying to pretend that Aleksa isn't severely delayed. I'll be the first to tell you that she is very delayed, and that she had no one really talk TO her or have expectations of her on any regular basis for 8 years of her life. She has not only a lot of baggage from past hurts and neglect, etc, but she also has a true lack of exposure. Could that be the reasoning?
Here's where we're struggling right now... we KNOW that Aleksa is very physically capable. She can dress and undress, toilet independently, eat with different utensils (maybe not super clean, but still...) and can "follow the crowd" really well when she's being properly motivated and understands that there is an authority person there. She knows how to play appropriately with some toys and does great with routines such as putting her clothes and night time diaper away in the trash and hamper in the morning, or coming to the table and waiting to pray, helping other kids to do simple tasks like putting toys away or going up or down a step (even though she herself isn't very stable most of the time...). We know that there are physical limitations that are just from a lack of exposure for so long, and cognitive and "higher order thinking" that are affected both by Ds and by her past. There shouldn't be significant language limitations at this point (14 months home) however we still use very BASIC terms with her when making requests so that we're sure that we are using words and terms that she understands, and very short sentences, etc.
We don't want to "pass this off" as just a behavior, an attention thing (sometimes it may be, but sometimes she is distraught at not getting it and really is TRYING to understand), or a lack of ability to comprehend unless we have looked at all the other possible causes that it could be. As far as auditory processing goes, she would have to have SEVERE issues with auditory processing to be having as much difficulty as she is with all of this! APD generally has ways to 'train' the brain to understand, and is often a first and last thing dropped, that sort of thing, not two or three words that someone simply cannot hear/understand/something...
Since it all is acting just like she can't hear... but her hearing tests appear to say that she CAN... what else could the problem be? She's so frustrated. As are we! She only mimics sounds/2 syllable rhythms (mama, bah bah (for bye bye), etc) when she has SEEN our face, or knows the social appropriateness since we've taught her (say "hi", say "bye" while having her look at our mouth and try to make the words). SOMETIMES she will mimic a 'random' sound. Not often.
There's so much more... but that's all for now. Would be very interested to hear what others have experienced in a similar matter... Thanks!
It's strange, because some days she may do exceptionally well with minimal amounts of physical signing, pointing, and direct hands-on prompting necessary. Other days, it seems she doesn't hear anything all day long. It's also difficult because she has VERY GOOD adaptive behavior. Imagine this scenario: You're 5 years old and someone drives you to a new "place to live" and drops you off with 80 other children all of whom are older than you (you used to be the oldest in your small group of kids you lived with) and many are as old as your previous caretakers. You quickly find that someone will physically punish you for not following "the crowd" and doing what everyone else is doing. So you figure out pretty quickly that when you see everyone going to do something that you, too, should go do it. You learn that when someone gives you a direction, even one you don't understand at all, that you look around and try to figure out what they're referring to, and if you can do something-- anything-- you try it. This was Aleksa's reality in the institution. You conform, figure out the routines, and if someone directs something at you, you try to figure out what they meant.
In new situations, though Aleksa will also frequently try to get away with whatever she can... she tends to try to figure out what wo't get her in trouble. She WANTS to understand. She LIKES to help. She will, when in a mood to do it, TRY to please at all cost. However she will also look at us and be obviously searching to try to figure out what we're saying... and be unable to even when it is a very simple direction that she knows how to do and was able to do a day or two prior...
So... everything points to hearing. Problem being, She has had an OAE that she failed. Then she failed the Tympanogram in an "unusual pattern" and the ENT asked if we wanted to try tubes in her ears. We said YES, if that could be the issue, let's take care of it by all means. She got tubes. Nothing has improved (and that was a month ago...). She also had an ABR done while she was sedated. The ABR showed "normal to low-normal hearing with her left being a little worse than her right". The doctor said that's fine, shouldn't be any big deal, and come back again in 6 weeks for another OAE and exam. We saw him this morning.
I asked his opinion of what he thinks her response, or lack of response more appropriately, was due to. I will share his answer, then I'll share what he appeared to be saying :). He said that it's probably just auditory processing and they can't test that in a nonverbal child, so there's nothing else we can do. What he's implied in the past and appeared to be saying this time as well was this: Your child is mentally retarded and can't process words because of it. She's not going to learn to, so why are you wasting your time?
I understand auditory processing. One of my siblings has issues with it and has had to overcome a lot to be able to do well in some areas, but as he went through school with this "learning disability" as it's termed, he also was in the gifted student program. Auditory processing has little to do with cognition or ability to think. It is a real and diagnosed processing difficulty that occurs in people of ALL levels of intelligence.
I'm not trying to pretend that Aleksa isn't severely delayed. I'll be the first to tell you that she is very delayed, and that she had no one really talk TO her or have expectations of her on any regular basis for 8 years of her life. She has not only a lot of baggage from past hurts and neglect, etc, but she also has a true lack of exposure. Could that be the reasoning?
Here's where we're struggling right now... we KNOW that Aleksa is very physically capable. She can dress and undress, toilet independently, eat with different utensils (maybe not super clean, but still...) and can "follow the crowd" really well when she's being properly motivated and understands that there is an authority person there. She knows how to play appropriately with some toys and does great with routines such as putting her clothes and night time diaper away in the trash and hamper in the morning, or coming to the table and waiting to pray, helping other kids to do simple tasks like putting toys away or going up or down a step (even though she herself isn't very stable most of the time...). We know that there are physical limitations that are just from a lack of exposure for so long, and cognitive and "higher order thinking" that are affected both by Ds and by her past. There shouldn't be significant language limitations at this point (14 months home) however we still use very BASIC terms with her when making requests so that we're sure that we are using words and terms that she understands, and very short sentences, etc.
We don't want to "pass this off" as just a behavior, an attention thing (sometimes it may be, but sometimes she is distraught at not getting it and really is TRYING to understand), or a lack of ability to comprehend unless we have looked at all the other possible causes that it could be. As far as auditory processing goes, she would have to have SEVERE issues with auditory processing to be having as much difficulty as she is with all of this! APD generally has ways to 'train' the brain to understand, and is often a first and last thing dropped, that sort of thing, not two or three words that someone simply cannot hear/understand/something...
Since it all is acting just like she can't hear... but her hearing tests appear to say that she CAN... what else could the problem be? She's so frustrated. As are we! She only mimics sounds/2 syllable rhythms (mama, bah bah (for bye bye), etc) when she has SEEN our face, or knows the social appropriateness since we've taught her (say "hi", say "bye" while having her look at our mouth and try to make the words). SOMETIMES she will mimic a 'random' sound. Not often.
There's so much more... but that's all for now. Would be very interested to hear what others have experienced in a similar matter... Thanks!
Monday, February 20, 2012
The after-bath lineup...
Where everyone's diapers and pjs are out and waiting for little people to fill them! And even better... All our pull-up wearers now dress themselves completely, and our diapered crew just needs help getting their arms in!! We've all been working hard!
Organizing Life
The last two weeks I've been slowly starting to feel better! YAY! I'm still not quite up to par, especially in the mornings and late at night, but hey, if I can have most of the day that's a pretty good start :).
Now that I'm feeling better, I'm looking around going YIKES! LOL! So many things I haven't done because I haven't had the energy or the time, but now need to be done! We've got a big project starting in the next few weeks, and we need to prepare the house for that to start. Right as that project is finishing, it will be SUMMERTIME! With summer means summertime activities, and for us it means starting up school activities at home too! On the tail end of summer will come the birth of our 9th child :). And when I write it that way, instead of being 22 weeks before the baby will be here (2 weeks early... scheduled c-section by necessity...), it feels like it will be more like 8! And of course after that is another 8 weeks of recovery that I have to think about beforehand. I know there's plenty more time, but I've realized that I need to get life a little more organized or I'll be going nuts pretty soon :)!
First off... our first project! We are very excited to be able to add a bedroom and a handicap bathroom on to our home! In actuality, we will be renovating an existing bedroom and changing it in to the handicap bathroom as well as a hallway, and the new construction will consist of a bedroom and a 'study' (no closet). We currently have 3 bedrooms that the kids share, and this will give us a 4th. It will also give both Wesley (and us!!) and Emma much more usability of the bathroom with a little more independence. Right now, Emma cannot get on or off of a toilet on her own. The new bathroom will have rails and our existing step to use for getting on and off the toilet. Showering Wesley can sometimes be a sport, and as he grows it will be even more of a blessing to have a roll-in shower with a very open design. We will be looking for a toileting system that can hold Wesley up on the toilet as well, since he can neither sit nor support himself on the toilet with his hands. We hope he may be able to have some degree of toilet training once that's even an option.
The thing I'm thinking Wesley will appreciate the most is a SINK that we can roll his wheelchair up to! Wesley has never been able to wash his hands in a sink unless he's being 'dangled' over it! We hope he will be able to access the sink from his wheelchair and actually WASH them for himself! I realize that sounds minor and petty, but in his world of dependence, every little bit of 'normalcy' and independence is a HUGE step forward! Construction begins early March and should be completed by mid-late May. We've been working through this concept for months now, and are so thankful it's all coming together now!
To prepare for the construction, we'll be losing a bedroom until it's complete, and we'll be losing a bathroom for some of the time (they will tie in to the plumbing in our existing bathroom so will have to tear it up, all the walls and flooring). Some of the kids will have a 'temporary' bedroom in our play room. Should be simple, right? Not exactly... We don't have any blinds in our playroom, and it's got HUGE floor to ceiling windows! In addition, we will have to disassemble two bunk beds (one is going to a different bedroom, the other relocating to the playroom), and a crib (toddler bed) to move them to the new locations. Not exactly a quick endeavor... but one that will be well worth it in the end!!
As the construction winds down, our summer planning will all be coming to a head! We've always "homeschooled" the kids during the summer after determining that the summer program at school (we did it once...) wasn't exactly going to help the kids since it was often new teachers, new classrooms, and possibly even a new school... This year we'll be doing more formal homeschooling (as formal as you can get in the summer and with 8 kids!) during June and July. More like what I do with Brianna on a regular basis... but x7 or 8! Kristopher doesn't need it nearly as much as the other kids, but inevitably we'll be doing activities for him as well :).
Throughout the summer months we'll also be prepping for our new little one to join us, and therefore prepping for the 8 weeks of recovery time after the c-section. It will be a little more interesting this time around since we now are blessed with a little man that happens to be completely immobile and total-care. It will mean more planning and more resourcefulness required on my part. I'm up for the challenge... :)
As August dawns, there are, of course, more things already in the works during my recovery time and for the months after as well... but for now I'm focusing on the construction and the summer! And the whole "spring cleaning" idea that really is necessary right now :).
Now that I'm feeling better, I'm looking around going YIKES! LOL! So many things I haven't done because I haven't had the energy or the time, but now need to be done! We've got a big project starting in the next few weeks, and we need to prepare the house for that to start. Right as that project is finishing, it will be SUMMERTIME! With summer means summertime activities, and for us it means starting up school activities at home too! On the tail end of summer will come the birth of our 9th child :). And when I write it that way, instead of being 22 weeks before the baby will be here (2 weeks early... scheduled c-section by necessity...), it feels like it will be more like 8! And of course after that is another 8 weeks of recovery that I have to think about beforehand. I know there's plenty more time, but I've realized that I need to get life a little more organized or I'll be going nuts pretty soon :)!
First off... our first project! We are very excited to be able to add a bedroom and a handicap bathroom on to our home! In actuality, we will be renovating an existing bedroom and changing it in to the handicap bathroom as well as a hallway, and the new construction will consist of a bedroom and a 'study' (no closet). We currently have 3 bedrooms that the kids share, and this will give us a 4th. It will also give both Wesley (and us!!) and Emma much more usability of the bathroom with a little more independence. Right now, Emma cannot get on or off of a toilet on her own. The new bathroom will have rails and our existing step to use for getting on and off the toilet. Showering Wesley can sometimes be a sport, and as he grows it will be even more of a blessing to have a roll-in shower with a very open design. We will be looking for a toileting system that can hold Wesley up on the toilet as well, since he can neither sit nor support himself on the toilet with his hands. We hope he may be able to have some degree of toilet training once that's even an option.
The thing I'm thinking Wesley will appreciate the most is a SINK that we can roll his wheelchair up to! Wesley has never been able to wash his hands in a sink unless he's being 'dangled' over it! We hope he will be able to access the sink from his wheelchair and actually WASH them for himself! I realize that sounds minor and petty, but in his world of dependence, every little bit of 'normalcy' and independence is a HUGE step forward! Construction begins early March and should be completed by mid-late May. We've been working through this concept for months now, and are so thankful it's all coming together now!
To prepare for the construction, we'll be losing a bedroom until it's complete, and we'll be losing a bathroom for some of the time (they will tie in to the plumbing in our existing bathroom so will have to tear it up, all the walls and flooring). Some of the kids will have a 'temporary' bedroom in our play room. Should be simple, right? Not exactly... We don't have any blinds in our playroom, and it's got HUGE floor to ceiling windows! In addition, we will have to disassemble two bunk beds (one is going to a different bedroom, the other relocating to the playroom), and a crib (toddler bed) to move them to the new locations. Not exactly a quick endeavor... but one that will be well worth it in the end!!
As the construction winds down, our summer planning will all be coming to a head! We've always "homeschooled" the kids during the summer after determining that the summer program at school (we did it once...) wasn't exactly going to help the kids since it was often new teachers, new classrooms, and possibly even a new school... This year we'll be doing more formal homeschooling (as formal as you can get in the summer and with 8 kids!) during June and July. More like what I do with Brianna on a regular basis... but x7 or 8! Kristopher doesn't need it nearly as much as the other kids, but inevitably we'll be doing activities for him as well :).
Throughout the summer months we'll also be prepping for our new little one to join us, and therefore prepping for the 8 weeks of recovery time after the c-section. It will be a little more interesting this time around since we now are blessed with a little man that happens to be completely immobile and total-care. It will mean more planning and more resourcefulness required on my part. I'm up for the challenge... :)
As August dawns, there are, of course, more things already in the works during my recovery time and for the months after as well... but for now I'm focusing on the construction and the summer! And the whole "spring cleaning" idea that really is necessary right now :).
Tuesday, February 14, 2012
A "Special Needs" Valentine's Day...
I don't mean to be a downer on the day of celebration, but I'm afraid this is one of those posts. It's been a great day, a day not so out of the ordinary except that the kids are wearing clothes that might lean more toward reds and pinks than 'normal' and there was a party at school. Our younger two girls and our older son all enjoyed the parties, and the little girls came home and looked at the little cards, separated out the candies, and had a fun time at "Daddy Love Lunch" with their dad today!
But we have 5 more kids... Five kids whose needs are more significant than some and who have a totally different kind of day on Valentine's Day. It happens with other celebration days as well, but those generally have more educational or spiritual value than Valentine's Day, so there's some net worth in the difficulties they have to overcome.
For my 5 little ones with special needs that go to school today was an ordinary start to the day. As painstaking as it was for ME to have to write out 58 valentine's cards that said "To My friend From (Aleksa, Emma, Welsey, James, or Micah-- and I did Lynae and Brianna's as well)," The idea of having the kids participate in this activity would need to have been started weeks ago since none of the 5 can write a letter independently, much less entire names or words. So I filled out the cards to friends and I put them all in their backpacks, ready for the day.
The kids were dressed a little more in the lines of pinks and reds than any ordinary day, and of course we woke with "Happy Valentine's Day!"... but otherwise the day was much like any other before school.
Our kids have great teachers that truly DO start weeks in advance at times in preparing things like crafts for the kids to do, and I'm sure that the kids enjoyed school both today and in the days leading up. I'm sure they found it fun to pass out the little cards that I'd prepped for their day (presuming that the teachers had the students hand them out...). And they were truly excited when they saw that they had that same bag/box in their backpack when we got home today.
Then we sit down at the table and the day goes on... And this is where the scrooge of Valentine's Day in me comes out, I suppose. It's a time when I look at the things dumped out in front of each child. I quickly pull the candy out of Micah and James' bags since it is either hard or gummy, neither of which they can eat. Then I look on to Emma, Micah, and Aleksa's piles and notice the squished mini cupcakes with icing mushed in to a ziplock baggie. No name for who it's from, not idea what's in it. Those are the next to go. I believe most parents in their class would cook a great sweet treat for the kids. Others would likely try to poison them :). We just won't go there. Then we remove the pencils that have already become sticks to hit one another with, and the erasers that are quickly about to be mistaken for candy.
What Micah and James are left with is a pile of little folded papers with pictures on them and names scribbled on by hurried parents. Aleksa and Emma still have a mountain of candy along with their papers. Wesley's whole bounty is sitting there because he doesn't really care one way or another and I haven't needed to confiscate from him yet because of that. If they had their way, I'm sure the girls would have eaten every piece of food in front of them (and the erasers, and the packaging) if I'd let them, but we really don't let the kids have much sugar. Especially those that have attention and/or behavior issues...
So, I open one package of candy and spread it out among the kids that can have some. The rest goes to the refrigerator drawer to be eaten by hungry visitors and otherwise to wait to be purged again around Easter. The kids take one glance at the pile of cards and decide they're done. They left the table and I realized that not only are the little cards pretty useless, but all of the candy and food that they brought home from school will most likely go to waste. The idea of the holiday is wrapped around children that can eat without restrictions, that can read and recognize common characters and pictures, and who understand the idea of giving the cards to friends. My 5 children with Down syndrome have no ability to do any of those things.
It's almost like giving a 2 year old an adult bicycle without training wheels for Christmas. OOOOHHHH!! SO FUN! Then they realize all they can do is look at it, and the perspective changes to uuuuuuhhhhh..... not that!!!!!!!!!
My more involved special needs kids aren't disappointed. They don't realize that other kids can eat the candies, or can play with tiny toys, or that the little papers are supposed to be neat things from friends at school. They enjoyed the momentary time of getting and giving, then they came home and saw it... and are done. Their teachers made it fun
Yes, those that have the ability to eat the candy will eat a small amount over the next few days as appropriate. But otherwise, the idea of a "School Valentine's Day" is lost on them... and it's back to being just another day...
Now the kids are having a blast with the windows open in the playroom, swinging and playing with music on and dancing around... this is what a Special Needs Valentine's Day should be :). Regardless of whether it centers around hearts and candies and a naked baby armed with a bow and arrow... :)
But we have 5 more kids... Five kids whose needs are more significant than some and who have a totally different kind of day on Valentine's Day. It happens with other celebration days as well, but those generally have more educational or spiritual value than Valentine's Day, so there's some net worth in the difficulties they have to overcome.
For my 5 little ones with special needs that go to school today was an ordinary start to the day. As painstaking as it was for ME to have to write out 58 valentine's cards that said "To My friend From (Aleksa, Emma, Welsey, James, or Micah-- and I did Lynae and Brianna's as well)," The idea of having the kids participate in this activity would need to have been started weeks ago since none of the 5 can write a letter independently, much less entire names or words. So I filled out the cards to friends and I put them all in their backpacks, ready for the day.
The kids were dressed a little more in the lines of pinks and reds than any ordinary day, and of course we woke with "Happy Valentine's Day!"... but otherwise the day was much like any other before school.
Our kids have great teachers that truly DO start weeks in advance at times in preparing things like crafts for the kids to do, and I'm sure that the kids enjoyed school both today and in the days leading up. I'm sure they found it fun to pass out the little cards that I'd prepped for their day (presuming that the teachers had the students hand them out...). And they were truly excited when they saw that they had that same bag/box in their backpack when we got home today.
Then we sit down at the table and the day goes on... And this is where the scrooge of Valentine's Day in me comes out, I suppose. It's a time when I look at the things dumped out in front of each child. I quickly pull the candy out of Micah and James' bags since it is either hard or gummy, neither of which they can eat. Then I look on to Emma, Micah, and Aleksa's piles and notice the squished mini cupcakes with icing mushed in to a ziplock baggie. No name for who it's from, not idea what's in it. Those are the next to go. I believe most parents in their class would cook a great sweet treat for the kids. Others would likely try to poison them :). We just won't go there. Then we remove the pencils that have already become sticks to hit one another with, and the erasers that are quickly about to be mistaken for candy.
What Micah and James are left with is a pile of little folded papers with pictures on them and names scribbled on by hurried parents. Aleksa and Emma still have a mountain of candy along with their papers. Wesley's whole bounty is sitting there because he doesn't really care one way or another and I haven't needed to confiscate from him yet because of that. If they had their way, I'm sure the girls would have eaten every piece of food in front of them (and the erasers, and the packaging) if I'd let them, but we really don't let the kids have much sugar. Especially those that have attention and/or behavior issues...
So, I open one package of candy and spread it out among the kids that can have some. The rest goes to the refrigerator drawer to be eaten by hungry visitors and otherwise to wait to be purged again around Easter. The kids take one glance at the pile of cards and decide they're done. They left the table and I realized that not only are the little cards pretty useless, but all of the candy and food that they brought home from school will most likely go to waste. The idea of the holiday is wrapped around children that can eat without restrictions, that can read and recognize common characters and pictures, and who understand the idea of giving the cards to friends. My 5 children with Down syndrome have no ability to do any of those things.
It's almost like giving a 2 year old an adult bicycle without training wheels for Christmas. OOOOHHHH!! SO FUN! Then they realize all they can do is look at it, and the perspective changes to uuuuuuhhhhh..... not that!!!!!!!!!
My more involved special needs kids aren't disappointed. They don't realize that other kids can eat the candies, or can play with tiny toys, or that the little papers are supposed to be neat things from friends at school. They enjoyed the momentary time of getting and giving, then they came home and saw it... and are done. Their teachers made it fun
Yes, those that have the ability to eat the candy will eat a small amount over the next few days as appropriate. But otherwise, the idea of a "School Valentine's Day" is lost on them... and it's back to being just another day...
Now the kids are having a blast with the windows open in the playroom, swinging and playing with music on and dancing around... this is what a Special Needs Valentine's Day should be :). Regardless of whether it centers around hearts and candies and a naked baby armed with a bow and arrow... :)
Wednesday, February 01, 2012
A new way to follow...
If you're interested in following along on our blog, but don't check in online all that often, you can put your email address in the "follow by email" box on the right side column and you'll receive posts by email. It sends them out several hours later, but hey... you don't have to come by the blog :)
New Month, New Beginnings...
It's February 1st, a new month, and several new beginnings :).
On January 30th, my brother became a daddy for the first time! David and Erin had beautiful Sophia Harmony Pocock just before 11 after a quick labor and delivery. Michael and I are also an aunt and uncle for the first time!
This month is a month of birthdays in our house! Wesley will be 7, Kristopher will be 8, and Emma will be 9! Our new line-up will last from February until late July when the new baby is born... The kids will be 9, 9, 8, 7, 6, 5, 5, and 2!
The weather here has been BEAUTIFUL. It's been in the mid-70's for a few weeks. Great time for playing outside, leaving the windows open, and cleaning house.
And on that note, though I'm still nauseous pretty much all day every day... I am starting to get more energy as I get in to the second trimester! Time to make up for some of the stuff I've been really slacking on the last few months. In between being sick, I'm not falling over tired the last couple days. Things are looking up in that regard!
Several other things in the air that we've been working on as well, and I'm looking forward to a good month, a new and more productive month, and hopefully one filled with more energy... and maybe even waning off on the sickness :)
On January 30th, my brother became a daddy for the first time! David and Erin had beautiful Sophia Harmony Pocock just before 11 after a quick labor and delivery. Michael and I are also an aunt and uncle for the first time!
This month is a month of birthdays in our house! Wesley will be 7, Kristopher will be 8, and Emma will be 9! Our new line-up will last from February until late July when the new baby is born... The kids will be 9, 9, 8, 7, 6, 5, 5, and 2!
The weather here has been BEAUTIFUL. It's been in the mid-70's for a few weeks. Great time for playing outside, leaving the windows open, and cleaning house.
And on that note, though I'm still nauseous pretty much all day every day... I am starting to get more energy as I get in to the second trimester! Time to make up for some of the stuff I've been really slacking on the last few months. In between being sick, I'm not falling over tired the last couple days. Things are looking up in that regard!
Several other things in the air that we've been working on as well, and I'm looking forward to a good month, a new and more productive month, and hopefully one filled with more energy... and maybe even waning off on the sickness :)
Sunday, January 29, 2012
Sometimes
Sometimes I write nothing, because if I wrote anything, there would be way too much to say.
Last week:
Wednesday: Pre-op for Aleksa's ear tubes/hearing test -- All looks well for surgery Friday
Thursday: Lynae pediatrician for ongoing runny nose and cough (since 12/2011!)-- Ended up with Rx for Albuterol 3-4x/day, Claratin for Children, Nasonex, and Singulair for the next 4 months... Appears to be allergies or Asthma.
Friday: Aleksa's ear tube surgery and ABR. Tubes went in, ears looked awful (??) and hearing test results still out. Then, evening Financial planning seminar in Orlando with the DSACF which was great, but a late night and made for a very long day!
Saturday: Horse therapy, attempted unsuccessful naps for children, wonderful friend brought dinner!, and Wesley's sleep study (Michael went with him).
Sunday: too many circumstances to describe, but missed church, moved 6 kids' bedrooms around, washed all the kids' sheets, then our fridge died and spent the evening fixing it... or rather watching Michael do that.
When I say it like that, it sounds boring. Somehow, it was NOT a boring week though!!! But if I go in to details, I'm thinking I'd be up all night....
Last week:
Wednesday: Pre-op for Aleksa's ear tubes/hearing test -- All looks well for surgery Friday
Thursday: Lynae pediatrician for ongoing runny nose and cough (since 12/2011!)-- Ended up with Rx for Albuterol 3-4x/day, Claratin for Children, Nasonex, and Singulair for the next 4 months... Appears to be allergies or Asthma.
Friday: Aleksa's ear tube surgery and ABR. Tubes went in, ears looked awful (??) and hearing test results still out. Then, evening Financial planning seminar in Orlando with the DSACF which was great, but a late night and made for a very long day!
Saturday: Horse therapy, attempted unsuccessful naps for children, wonderful friend brought dinner!, and Wesley's sleep study (Michael went with him).
Sunday: too many circumstances to describe, but missed church, moved 6 kids' bedrooms around, washed all the kids' sheets, then our fridge died and spent the evening fixing it... or rather watching Michael do that.
When I say it like that, it sounds boring. Somehow, it was NOT a boring week though!!! But if I go in to details, I'm thinking I'd be up all night....
Wednesday, January 25, 2012
The saga continues...
When I'm asked what the most DIFFICULT part of parenting children with special needs is, I have a very simple response to that.
Dealing with getting appropriate healthcare and education!
Now, please don't mistake this for the DOCTORS, or the NURSES, or the TEACHERS or THERAPISTS! By all means, we have been blessed abundantly by those professionals that have worked directly with our children! No, instead I mean the insurance companies, people sending out paperwork (or rather, not sending it...) and the like.
Just today I received a large envelope in the mail for Wesley's sleep study happening this Saturday night. You know, 3 days from now. The first page says "IMPORTANT" in bold, capital letters and highlighted. Then it says "please begin filling out this sleep log 7 nights prior to your sleep study. This information is very important for us to accurately read the results of your study."
Now, let me think... what times did Wesley wake and what times was it another child over the last 4 nights? I HAVE NO IDEA! :).
------------------------------
In similar news, last week when I took Wesley in for his GI appointment on Wednesday we learned that Wes has H. Pylori. This was in a way a relief, since it is a treatable condition and means that there is a potential that after he heals up from this, that he may have a better time of getting adequate nutrients and a better food intake in the near future. YAY!
Unfortunately, our doctor, pharmacy, and insurance company just can't seem to get along :). Ok, really, it's just the insurance company, but all the other parties have been very involved as well...
At first, we had a script for Prevacid Solutab (dissolving tablets) 15 mg tablets since the 2 antibiotics that Wesley is on will cause significant reflux if not simultaneously treated. We were told that there is no longer a generic of this med, so it may be a problem with insurance. Then we got a call that it was 'stuck' with insurance and would be delayed.
I called the pharmacy... they said it's because it's a prescription for Solutab tablets that insurance kicked it back. Since Wesley is over 5, he's expected to get a caplet and swallow it.
I can picture it now... I put the caplet in his mouth with something else and he either chews it up or he gags, chokes, or just immediately vomits. The goal would be for him not to chew it. The others don't sound as pleasant, though!
Ok, so call the insurance company and the nurse at the doctor's office. Also called our insurance liaison to ask her how to get this done. Our insurance company told us to write to their Utah office and they'd let us know in about 6 weeks whether it would be approved. Really? 6 WEEKS before he can be treated for an infection he has RIGHT NOW?
Our insurance liaison was given a fax number for more immediate concerns (though the nurse wasn't offered this option). Still, they said we'd need to pay for the medication and "wait and see" if it was going to be covered in the future.
I really don't mind paying for what we're supposed to pay for. Really I don't. But if we're NOT supposed to pay for something, I certainly don't want to pay for it! After all, this medication is about $100. Not a cheap one by any means. Eventually we found someone that has used the caplets and opened them up and mixed them in to applesauce or something similar, so we called our doctor and said PLEASE, just rewrite it for the caplets so we can get this show on the road and get the right meds for Wes!
Next thing I know, the doctor has said he'd like it to be compounded if insurance won't accept it as a Solutab... Now I'm waiting for it to be called in, a full week later, to a different pharmacy that will compound the medicine so that we can give it to him as a liquid!!
--------------------------------------
I won't get in to the obstacles in the education system or difficulties therein right now. Medical is enough for one day :)
Dealing with getting appropriate healthcare and education!
Now, please don't mistake this for the DOCTORS, or the NURSES, or the TEACHERS or THERAPISTS! By all means, we have been blessed abundantly by those professionals that have worked directly with our children! No, instead I mean the insurance companies, people sending out paperwork (or rather, not sending it...) and the like.
Just today I received a large envelope in the mail for Wesley's sleep study happening this Saturday night. You know, 3 days from now. The first page says "IMPORTANT" in bold, capital letters and highlighted. Then it says "please begin filling out this sleep log 7 nights prior to your sleep study. This information is very important for us to accurately read the results of your study."
Now, let me think... what times did Wesley wake and what times was it another child over the last 4 nights? I HAVE NO IDEA! :).
------------------------------
In similar news, last week when I took Wesley in for his GI appointment on Wednesday we learned that Wes has H. Pylori. This was in a way a relief, since it is a treatable condition and means that there is a potential that after he heals up from this, that he may have a better time of getting adequate nutrients and a better food intake in the near future. YAY!
Unfortunately, our doctor, pharmacy, and insurance company just can't seem to get along :). Ok, really, it's just the insurance company, but all the other parties have been very involved as well...
At first, we had a script for Prevacid Solutab (dissolving tablets) 15 mg tablets since the 2 antibiotics that Wesley is on will cause significant reflux if not simultaneously treated. We were told that there is no longer a generic of this med, so it may be a problem with insurance. Then we got a call that it was 'stuck' with insurance and would be delayed.
I called the pharmacy... they said it's because it's a prescription for Solutab tablets that insurance kicked it back. Since Wesley is over 5, he's expected to get a caplet and swallow it.
I can picture it now... I put the caplet in his mouth with something else and he either chews it up or he gags, chokes, or just immediately vomits. The goal would be for him not to chew it. The others don't sound as pleasant, though!
Ok, so call the insurance company and the nurse at the doctor's office. Also called our insurance liaison to ask her how to get this done. Our insurance company told us to write to their Utah office and they'd let us know in about 6 weeks whether it would be approved. Really? 6 WEEKS before he can be treated for an infection he has RIGHT NOW?
Our insurance liaison was given a fax number for more immediate concerns (though the nurse wasn't offered this option). Still, they said we'd need to pay for the medication and "wait and see" if it was going to be covered in the future.
I really don't mind paying for what we're supposed to pay for. Really I don't. But if we're NOT supposed to pay for something, I certainly don't want to pay for it! After all, this medication is about $100. Not a cheap one by any means. Eventually we found someone that has used the caplets and opened them up and mixed them in to applesauce or something similar, so we called our doctor and said PLEASE, just rewrite it for the caplets so we can get this show on the road and get the right meds for Wes!
Next thing I know, the doctor has said he'd like it to be compounded if insurance won't accept it as a Solutab... Now I'm waiting for it to be called in, a full week later, to a different pharmacy that will compound the medicine so that we can give it to him as a liquid!!
--------------------------------------
I won't get in to the obstacles in the education system or difficulties therein right now. Medical is enough for one day :)
Sunday, January 22, 2012
It's birthday time :)
Today, it's my birthday :). I've sent the weekend with my mom and ladies from her church at a Women's Confence in Leesburg and had a nice time!
Today we head back home and I'm glad for that as well, though. I'm sure there's a little Kristopher that has been counting down the days for two weeks until Mommy is 30. Who would want to disappoint a 7 year old by not showing your face on your birthday?
I did, however, make it difficult on my Facebook friends... I posted this last night:
What? You can't write on my wall?? :). Maybe... I did it on purpose :). You see, every day that I sign on to Facebook I look to the column that has birthdays and if I have a minute, I send of a Happy Birthday shout out to friends. But then, when I go to check in and see how a friend is going three days after their birthday, and I haven't seen or heard from them in a week, I have to search through 50,000 birthday greetings back page after page to find out what they are up to and not just read the many (often wonderful and inspiring!) birthday posts. So, yes, I intentionally blocked my wall this weekend because yes, it's my birthday. And yes, I'm THIRTY! :). And no, I don't even mind :). But I'm not so fond of the 50 million individual birthday posts, so I took it in to my own hands. So mean of me :). Thank you to those who have already wished me a private happy birthday :) Sorry you felt left out that you couldn't post it on my wall :). I promise... It's not just you :)
As one of the conference leaders so aptly put it yesterday, "God's done quite a bit in your life already, can't wait to see what the next 30 nd more years hold!". I tend to agree. The last 6 years, especially, have been one blessing and trial after another, but what a wonderful road God has us on!
Here's what God has done in my life the last 30 years...
I was raised in a Christian home, and accepted Christ and made a life change to live for him just before my 15th birthday. Just less than a year later I began dating the kid that always bugged and picked on me through school. I thought it was so he'd leave me alone, but Gods plans were different. In August 2000, just weeks after our high school graduation, Michael proposed and we were married in July 2001. We had a plan for the next few years... Finish college, have a baby, buy a house, and start in our career fields, him working in the church and me taking care of our baby and working part time as life allowed. Then we wanted a second child, about 2 years apart. We knew we wanted more than that, but we stopped our life planning there.
Amazingly, we had heard God right on and our wedding, schooling, pregnancy that led to Kristopher's birth just 2 months after my own college graduation, and the birth of Brianna just 6 weeks shy of 2 years later were all right in line with our plans for life. We owned our house a car and mini van and Michael had also graduated just after Kristopher was born and worked at Park Avenue church.
Our planning must have stopped there for a reason, because God took it from there and made the magic that our family is today...
Brianna was diagnosed with Down syndrome at 8 weeks old. Then two days later we learned she had a major heart defect and needed open heart surgery. That same day a child that is like a courtesy nephew to us was dropped off on our door step for the next 5 weeks because his mother had nothing and no one, lived over and hour away, and was about to have another baby. He'd was 14 months old. We then struggled big time dealing with the diagnosis and fear for our newborn, a wild and undisciplined 14 month old that also liked to embed his jaws in to Kristopher's arms, and a happy little 25 month old Kristopherr whose world had now been rocked then rocked, then rocked in the last 2 months.
Brianna had open heart surgery then ended up with a g-tube all at 5 months old. She was in the hospital 3 hours away for 19 days and again our family was separated. Thank God for grandparents that kept Kristopher...
Through all the difficulties that her diagnosis brought, getting through the heart surgery was really the biggie. We loved Brianna for exactly who she was and is, and her diagnosis took some adjusting, but didn't scare us. When she was 18 months old we decided to adopt...
We traveled just after her second birthday and my sister filled in as mommy for a month while Michael and I went to Ukraine. We tried to adopt 5 year old Aleksa only to be told no because she was in a mental institution that couldn't understand our true intentions of wanting to parent her. Then we instead brought home Emma and Micah, two very different children than we had prepared our hearts and homes for.
At 6 weeks home Emma was diagnosed through heart catheterization as being terminal. She was given about 6 months and we were told to take her home and enjoy her. The roller coaster continued when the very next day after returning home Micah was admitted to the hospital with pneumonia. His 5 day stay continued to shake our family and our world.
Much ensued during the mean time, but Emma had surgery for her tonsils and adenoids to have them removed in June of 2008, the hope and prayer that it would in some way help her to be able to have the heart surgery she desperately needed. 8 days later she came home in bad shape, and her heart surgery was scheduled, though it was explained to us that the likelihood of a successful heart repair was very very low and still would have many complications.
August 4th we said goodbye to our baby girl, just 5 1/2 years old and barely over 20 pounds who we had only just begun getting to know. On August 8th we took her home, happy, healed, and with a wonderful life outlook!!!
Since that day Emma's lungs have done what is medically not possible... They've begun to heal themselves from the years of damage that was caused by her major heart defect...
Just a few months later we learned that another baby would be entering our lives and in September 2009, Lynae was born. Michael went to Kenya for a mission trip over New Year's that year and while he was gone I discovered a little boy with Down syndrome on the Florida adoption website. With Michael's permission to inquire, we began the process of another private home study, 11 weeks of MAPP parenting classes through the state, and James' placement in our home in May 2010. That July God called Michael specifically to the face of another little boy in Ukraine, and we prepared to bring Wesley, a quadriplegic with unknown past and future, in to our family.
I traveled on a mission trip to Ukraine with a friend and was contacted in that time by a missionary. She didn't know it at the time, but she was the angel we had hoped and prayed for, but we didn't know the extent we would be blessed by it. We never knew what had happened
to little Aleksa, the girl we couldn't adopt 3 years earlier. Alla knew her and not only gave us news about her, but advocated to the director for us to be able to adopt her now. Thinking it was impossible because we hadn't filled out all the paperwork for two children, we quickly learned that God had prepared the way for us, with all of our paperwork including an application to US immigration where we had asked for approval for one child... Approving for two.
On September 17th we first heard from Alla and knew that Aleksa was still alive and well. Exactly three months later, on December 17th, I took Aleksa out of the institution gates for the very last time!!! Wesley joined us as well and came to me just 2 days later. We spent our first Christmas using Skype to see our family and came home on December 29th.
It's been one year since God added #7 and 8 to our family, and now we are expecting baby #9, planned to arrive on July 31st. Michael still works at Park Avenue, I still have worked part time as needed, but am home with our children. Our mini van is still around, but that little car turned in to a 15 passenger van and those plans we didn't make have been radically taken over by a living God that has blessed us more abundantly than we could have known to ask for!
Michael and I just celebrated 10 years of marriage, and I couldn't have dreamed up a better husband, lover, and friend. Who knew in junior high that the kid kicking my crutches out from under me would be the same gentleman that led me through 39 hours of labor; who cuddled our smelly, angry, 5 year old in a foreign country and brought her home to tenderly hold her hand, kiss her face, and stand together with me as we faced what we thought would be her death; who said "yes" as God called us to a full and busy house of children born to us and children gifted to us from God; who would still smile and share his excitement when I told him that baby #9 was on the way... Just a few hours after I returned from being overseas for 9 days; who loves me unconditionally, fathers our children with God's tender grace, and makes each day a new adventure that I love to embrace alongside him...
So I don't mind saying that I am thirty years old today, and I am not afraid of the idea of getting older :). I consider it a great joy to be able to share the testimony of what God has done in Michael and my life in the last 30 years and as was said to me yesterday... I can't wait to see what God has planned for the next 30 and more years! I won't be making any plans! As good as mine may be, God's are always so much better, even when it brings us through trials unimaginable to get there...
Today we head back home and I'm glad for that as well, though. I'm sure there's a little Kristopher that has been counting down the days for two weeks until Mommy is 30. Who would want to disappoint a 7 year old by not showing your face on your birthday?
I did, however, make it difficult on my Facebook friends... I posted this last night:
What? You can't write on my wall?? :). Maybe... I did it on purpose :). You see, every day that I sign on to Facebook I look to the column that has birthdays and if I have a minute, I send of a Happy Birthday shout out to friends. But then, when I go to check in and see how a friend is going three days after their birthday, and I haven't seen or heard from them in a week, I have to search through 50,000 birthday greetings back page after page to find out what they are up to and not just read the many (often wonderful and inspiring!) birthday posts. So, yes, I intentionally blocked my wall this weekend because yes, it's my birthday. And yes, I'm THIRTY! :). And no, I don't even mind :). But I'm not so fond of the 50 million individual birthday posts, so I took it in to my own hands. So mean of me :). Thank you to those who have already wished me a private happy birthday :) Sorry you felt left out that you couldn't post it on my wall :). I promise... It's not just you :)
As one of the conference leaders so aptly put it yesterday, "God's done quite a bit in your life already, can't wait to see what the next 30 nd more years hold!". I tend to agree. The last 6 years, especially, have been one blessing and trial after another, but what a wonderful road God has us on!
Here's what God has done in my life the last 30 years...
I was raised in a Christian home, and accepted Christ and made a life change to live for him just before my 15th birthday. Just less than a year later I began dating the kid that always bugged and picked on me through school. I thought it was so he'd leave me alone, but Gods plans were different. In August 2000, just weeks after our high school graduation, Michael proposed and we were married in July 2001. We had a plan for the next few years... Finish college, have a baby, buy a house, and start in our career fields, him working in the church and me taking care of our baby and working part time as life allowed. Then we wanted a second child, about 2 years apart. We knew we wanted more than that, but we stopped our life planning there.
Amazingly, we had heard God right on and our wedding, schooling, pregnancy that led to Kristopher's birth just 2 months after my own college graduation, and the birth of Brianna just 6 weeks shy of 2 years later were all right in line with our plans for life. We owned our house a car and mini van and Michael had also graduated just after Kristopher was born and worked at Park Avenue church.
Our planning must have stopped there for a reason, because God took it from there and made the magic that our family is today...
Brianna was diagnosed with Down syndrome at 8 weeks old. Then two days later we learned she had a major heart defect and needed open heart surgery. That same day a child that is like a courtesy nephew to us was dropped off on our door step for the next 5 weeks because his mother had nothing and no one, lived over and hour away, and was about to have another baby. He'd was 14 months old. We then struggled big time dealing with the diagnosis and fear for our newborn, a wild and undisciplined 14 month old that also liked to embed his jaws in to Kristopher's arms, and a happy little 25 month old Kristopherr whose world had now been rocked then rocked, then rocked in the last 2 months.
Brianna had open heart surgery then ended up with a g-tube all at 5 months old. She was in the hospital 3 hours away for 19 days and again our family was separated. Thank God for grandparents that kept Kristopher...
Through all the difficulties that her diagnosis brought, getting through the heart surgery was really the biggie. We loved Brianna for exactly who she was and is, and her diagnosis took some adjusting, but didn't scare us. When she was 18 months old we decided to adopt...
We traveled just after her second birthday and my sister filled in as mommy for a month while Michael and I went to Ukraine. We tried to adopt 5 year old Aleksa only to be told no because she was in a mental institution that couldn't understand our true intentions of wanting to parent her. Then we instead brought home Emma and Micah, two very different children than we had prepared our hearts and homes for.
At 6 weeks home Emma was diagnosed through heart catheterization as being terminal. She was given about 6 months and we were told to take her home and enjoy her. The roller coaster continued when the very next day after returning home Micah was admitted to the hospital with pneumonia. His 5 day stay continued to shake our family and our world.
Much ensued during the mean time, but Emma had surgery for her tonsils and adenoids to have them removed in June of 2008, the hope and prayer that it would in some way help her to be able to have the heart surgery she desperately needed. 8 days later she came home in bad shape, and her heart surgery was scheduled, though it was explained to us that the likelihood of a successful heart repair was very very low and still would have many complications.
August 4th we said goodbye to our baby girl, just 5 1/2 years old and barely over 20 pounds who we had only just begun getting to know. On August 8th we took her home, happy, healed, and with a wonderful life outlook!!!
Since that day Emma's lungs have done what is medically not possible... They've begun to heal themselves from the years of damage that was caused by her major heart defect...
Just a few months later we learned that another baby would be entering our lives and in September 2009, Lynae was born. Michael went to Kenya for a mission trip over New Year's that year and while he was gone I discovered a little boy with Down syndrome on the Florida adoption website. With Michael's permission to inquire, we began the process of another private home study, 11 weeks of MAPP parenting classes through the state, and James' placement in our home in May 2010. That July God called Michael specifically to the face of another little boy in Ukraine, and we prepared to bring Wesley, a quadriplegic with unknown past and future, in to our family.
I traveled on a mission trip to Ukraine with a friend and was contacted in that time by a missionary. She didn't know it at the time, but she was the angel we had hoped and prayed for, but we didn't know the extent we would be blessed by it. We never knew what had happened
to little Aleksa, the girl we couldn't adopt 3 years earlier. Alla knew her and not only gave us news about her, but advocated to the director for us to be able to adopt her now. Thinking it was impossible because we hadn't filled out all the paperwork for two children, we quickly learned that God had prepared the way for us, with all of our paperwork including an application to US immigration where we had asked for approval for one child... Approving for two.
On September 17th we first heard from Alla and knew that Aleksa was still alive and well. Exactly three months later, on December 17th, I took Aleksa out of the institution gates for the very last time!!! Wesley joined us as well and came to me just 2 days later. We spent our first Christmas using Skype to see our family and came home on December 29th.
It's been one year since God added #7 and 8 to our family, and now we are expecting baby #9, planned to arrive on July 31st. Michael still works at Park Avenue, I still have worked part time as needed, but am home with our children. Our mini van is still around, but that little car turned in to a 15 passenger van and those plans we didn't make have been radically taken over by a living God that has blessed us more abundantly than we could have known to ask for!
Michael and I just celebrated 10 years of marriage, and I couldn't have dreamed up a better husband, lover, and friend. Who knew in junior high that the kid kicking my crutches out from under me would be the same gentleman that led me through 39 hours of labor; who cuddled our smelly, angry, 5 year old in a foreign country and brought her home to tenderly hold her hand, kiss her face, and stand together with me as we faced what we thought would be her death; who said "yes" as God called us to a full and busy house of children born to us and children gifted to us from God; who would still smile and share his excitement when I told him that baby #9 was on the way... Just a few hours after I returned from being overseas for 9 days; who loves me unconditionally, fathers our children with God's tender grace, and makes each day a new adventure that I love to embrace alongside him...
So I don't mind saying that I am thirty years old today, and I am not afraid of the idea of getting older :). I consider it a great joy to be able to share the testimony of what God has done in Michael and my life in the last 30 years and as was said to me yesterday... I can't wait to see what God has planned for the next 30 and more years! I won't be making any plans! As good as mine may be, God's are always so much better, even when it brings us through trials unimaginable to get there...
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