All the medical updates!

The last few weeks have been MEDICAL weeks!  We go through seasons at our house where we will have an appointment here-- one there-- then, we have 19 in two weeks! :).  Thankfully since many of them are the same specialists for different children, we can combine appointments and get things accomplished much quicker and easier than we might if we were headed to many DIFFERENT specialists all the time :)

Yesterday I took Wesley to the GI doctor and he's still sitting right around the same weight.  He gained a little, lost a little.  He isn't interested in the Pediasure, so we switch flavors for a time, then he gets tired of those, so we mix and match, and he gets tired of that, so we do blended, and he gets tired of that, and...  It's been a constant struggle to find something that he'll take!  He doesn't LIKE that he has to drink so much.  He wants to EAT.  But he gets about 6-8 bites of food in and he's tired of chewing and swallowing, and he's DONE.  So... drink he must to get calories, which means he HAS TO drink before he gets to have food... it's just a battle.  One we're done fighting.  Wesley is being scheduled for a g-tube placement in the next few weeks.  The goal is for him to be HAPPY and FULL both at the same time... which quite frankly just doesn't happen very often right now.  We can do overnight feeds and daytime feeds between meals.  Then, when we all sit down at the table, he can have whatever he wants of what we're having and not HAVE to have something else first.  I hope and pray this will be a step in the right direction for him.  As he grows, his condition doesn't "get easier" like many kids with Down syndrome that learn to eat later on, etc.  His is a muscular issue with chewing and swallowing, and one that is sortof something we've known was coming for the last year but hoped he might just all of a sudden turn around and just improve based on his other major accomplishments and overcoming so much in other areas.  For now, we schedule surgery.

Brianna saw the opthalmologist on Friday due to squinting to see the TV with her glasses on, and she was taking them off regularly when playing quietly with small toys.  Her glasses script has been LESSENED which is great :)!  We also took the other 5 kids with us (I had a sitter come too... and Lynae was along for the ride) and the 6 that wear glasses all were fitted for new FLEXIBLE frames!  YAY!  We are so blessed that these frames were approved to be covered for the kids with no out of pocket expense (we offered to pay in to each pair since they don't generally approve these but the perosn working with us to get glasses felt strongly that the kids would benefit from them since their glasses do tend to be broken pretty often).  They will all have the SAME glasses frames, in 3 different colors and 3 different sizes, and varying temple lengths in addition to that, but... they will all have a good pair of glasses! :)

Staying on the eye topic, Micah, Emma, and Wesley all saw opthalmology a couple of weeks ago and all received new scripts as well (Aleksa and James are on every 2 years to see opthalmology). Wesley's script increased, Emma's changed slightly, and Micah's is lessening a little as well.  Emma had a correction for astigmatism added to her script.  Those three changes have already been made in the glasses we buy as an 'extra' pair from WalMart (free replacements for a year!!) and they are all wearing them well.  Thankful we'll have the flex frames as their main pair pretty soon, though!

Brianna, James, and Emma went to cardiology last Thursday.  Brianna sounds good, and they didn't do an echo this time.  She still has a mild leak in her valve from the last 'stitch' in her open heart surgery, but she will be seen again in 6 months and likely moved back to annual appointments at that time.  Emma has a moderate leak that may require an additional surgery in the future, but it's not being contemplated right now.  She'll continue on every 6 months for a while. They did an echo and it's "ok" for now.  James had an echo to check on everything for him and he... IS RELEASED! :)  James had an ASD and PDA that spontaneously closed before we even got him, and he had a history of spontaneous pulmonary hypertension, so we continued to monitor him for two years with our cardiologist to make sure we weren't overlooking anything from his past when he changed providers.  Thankfully, his PH levels look great on echo and he has no other symptoms to indicate otherwise (he still sees pulminology though!), his heart is all healed up and looks great, and this was the LAST echo that he should need! :)  I love that kind of news!  Hoping and praying that Lynae will be released at her next appointment, and Micah as well!  Then we'll be down to cardio care only for our two with major repairs.  What a blessed day that will be!

Last Wednesday Brianna and James went to endocrinology due to unusual thyroid levels for Brianna and hypothyroid for James.  Both of their bloodwork (including their annual screenings due to their diagnosis of ds) came back NORMAL!  That means James stays on his low-dose med and Brianna can continue to be unmedicated!

On Tuesday last week Brianna, James, and Micah went to the dentist, and I shared a bit about that experience earlier on. :)  None of them have cavities, and all will go back in 6 months for a cleaning. Yay!

Monday (yes, that's EVERY day last week!) I had an OB follow-up and things are going well.  My level 2 ultrasound and meeting with the perinatologist is this Friday.  Maybe we'll get a peek at the baby's gender then?? :)

The previous week on Thursday Aleksa saw the ENT.  We will be switching ENTs.  She failed both hearing tests (OAE and Tymp) in both ears then passed just the OAE in one ear on a second attempt.  Both her tubes are out (one had been for several weeks and the other was already out at 2 weeks after) and she got them just about 8 weeks ago. The ENT's solution was "wait and see" if her hearing improves, or put more tubes in. My solution is to get my 9 1/2 yr old to hear, now, without tubes since that was unsuccessful (and actually caused 2 ear infections, which she'd had none of prior, just uninfected fluid).  There are devices to bypass the outer and middle ear which seem much more appropriate than "wait and see" when dealing with a child that has likely never heard 'normally' in her life and is having a very difficult time trying to figure out life without adequate hearing in a totally different type of situation (family vs. mental institution).  She's been home for 16 months now, and this ENT has put off doing anything but "wait and see" and the one set of tubes (after a year).  Time for change...

And finally... that Monday Aleksa and Emma went to the dentist for their first visits.  Aleksa wasn't happy about it but survived.  Emma did great, surprisingly!  Still needed some attention, but didn't fuss or wiggle too much.  Both have some cavities (no surprise) and we are waiting for them to have sedated procedures scheduled.  Both of them also have teeth that haven't fallen out despite their adult tooth coming in behind them (this is pretty common for kids with Ds) so those baby teeth will be pulled as well.

And then our week will come to a close on Friday with our 3 weeks of doctor appointments with a total of 23 doctor's appointments!  Tomorrow are Kristopher and Emma's well visits, and Friday my Level 2 ultrasound. Then 3 weeks with absolutely NO scheduled appointments (of course we're waiting on 3 sedated procedures to be scheduled...).  It comes in waves!

Today's the day!!

After about 7 weeks of waiting... today the ACTUAL construction begins!  In just a little while, our project manager will be here along with a crew to level out the ground, dig footers, and then pour the concrete slab!

Looking forward to seeing this project get kicked off, and even more so looking forward to seeing it finished in a few (short??) months! :)

One more day, one more accomplishment!

Today we OFFICIALLY started on our home construction!!  Our permit applications were delayed a week initially because of a miscommunication between the permit folks and our project manager... And they ended up having to get our septic system certified which took that week.  After that, our permits were applied for with a "5-7 day wait"... and 5 weeks later we FINALLY got them!!

Today the permits were posted, the air conditioner units were relocated (they were in the way of the new construction), water lines were marked out so that the slab can be poured and our main house water can be moved once the new construction is in (it, too, is where the new construction will be), and I believe the gas lines may have been set up so they can pour the new slab on Monday.

While they were starting that project, I took James and Brianna to the endocrinologist along with the other 4 kids that are at home during the day.  They all behaved well, they're used to this office and the way they do things so the routine isn't anything new.  Both kids got a full YAY on their blood panels including screenings for secondary autoimmune issues like diabetes, celiac, etc.  That's always great to hear!

James is already on a thyroid med, but Brianna's is just being monitored, so James' dosage stays the same, and Brianna avoids meds even longer.

Another plus to the day, our nurse coordinator for the kids' specialists came down and talked to me before the doctor was in and 1- got Brianna in to the opthalmologist on FRIDAY this week... instead of NOVEMBER.  She's squinting but wasn't due to see opthal for another year and the next available appointment (until this cancellation opened one up) was August... which we can't do... then NOVEMBER!  Yay for Friday!  2- she said she'll schedule James' new pulmonology appt with a doctor at that clinic instead of me needing to take over scheduling and going to a different office, etc. which means one less thing for me to have to do!!  3- she understood our wanting to switch ENT and will move ALL our kiddos to a different group that are PEDIATRIC ENT.  We'll go with that and see how it goes.

All of that was accomplished along with 2 kids seeing the dr within 40 min of our appointment time. YAY!!

We now have air conditioning again... after 8:30-4:30 work being done to get those going, and on MONDAY we will have a slab poured for the new area.  Praying we don't have rain around that time so we don't have further delays!

Our new construction will add two rooms that will be used as bedrooms (one won't have a closet, though) and we'll be converting one current bedroom in to a fully handicap-accessible bathroom with roll-in shower, hand bars on everything, roll under sink, etc.  So net gain is one bedroom and one bathroom, since we're losing a bedroom in it as well.  It will be GREAT for Wesley and Emma to have a bathroom with more access and that will allow more independence both now and as they both get bigger!

Tomorrow is cardiology x3.  Fun stuff.

And some days, it all just works out...

Thankfully, today was one of those day!

We all got up and going this morning about 6:30, and by 7:20 Michael left to bring Kristopher to school and Lynae with him to the church until KAD (our mom's morning out program) started.  By 8:30 I had all the other kids ready to go and was, myself, ready to get moving.  We had two sitters show up... one to stay at the house with Emma and Wesley, and the other to go with me to the dentist with me +4.

After leaving the basics of the day with our sitter at home, we hit the road before 9am... in time to grab breakfast for ME and get on the road to downtown Orlando.  We made it to the dentist sans difficulty and got in and registered.  Then, I got to start up the 4 pages of paperwork for each of the 3 kids that were about to see the dentist for the first time!  After doing this twice last week for Aleksa and Emma, it wasn't so difficult to fill out all the forms for Brianna, James, and Micah today.  I was VERY glad, already, that I'd been able to have an extra 2 hands come with me so each of the kids got a trip to the restroom before we were called back... after being in the car for an hour :).

As I finished the paperwork, we were called to the back to a room with 3 dentist chairs in it.  Hmm... ok, which ONE did they want us in??  The nurse says "one in each, are we ready?" And I must have looked at her like she's crazy as I said, "I don't think that's going to work..."  The doctor came in just then... the same doctor (different nurse) that was with me last week with Aleksa and Emma, and she said for us to all go to one end and asked who I wanted to have go first.

Brianna is the easiest going of the three, and listens pretty well, so she was the best first candidate up.  She did great!!  I stood nearby and she either listened... or just told them 'no' then listened when they insisted :).  I think the nurses may have thought they were all going to be that easy after her.

Then the same nurse that was setting up directions earlier suggesting they all go at once, pointed at James and said "Let's do Micah next."  I replied with "Ok, and started getting Micah up (since he IS who I wanted to go next!).  She said, "no, the 5 year old."  I replied with "they're both 5!"  Micah went next :).

Micah cried through the entire thing, starting with putting the brakes on when I took him from my friend's lap and put him in the chair.  He pursed his lips together as much as possible and used his strong little tongue to get the dentist as far away as possible... but in general he still did ok.  I sat at the foot of the chair... after the same nurse as earlier (there were two in the room...) protested that SHE would hold on to Micah because I was... um... (she didn't want to say pregnant??).  I waited until the doctor was there then said "I'll just sit by his feet if that's ok?" and she replied with "Just like with the girls last week?"  "Yes" "Ok" And I sat by his feet, held on to his hands, and off we went.  He struggled, pulled away, but in the end his teeth were cleaned and there weren't any problems :).

Next was James.  If you can picture trying to brush a neurotic cat's teeth... you're probably close to picturing what the experience was like for James.

I first put him in the chair and sat by his feet, then I sat him 'criss cross' and put one hand on his ankles.  Then I folded his arms and held his wrists.  Very gently, of course!  They started cleaning his teeth... and we were shocked at how great he did!  Then... they turned on the suction machine and my grip got tighter as he attempted to dislocate every single joint (he can do this... it's not like he was hurting himself...) to get FREE.  So... in an effort to not have him climb the walls so often, they opted not to use the suction machine much :D.  This was a good idea.  Even still, he would all the sudden flip out and try to stand in the chair and lean backward over the side of it all at once on several occasions and only my grip on him kept him from flying away.

We then had 2 nurses along with the dentist in there.  One holding his head, the dentist trying to work, and the second nurse holding and handing over the equipment.  And me, doing what mommies do, holding on to him and trying to keep him from going overboard with this experience :).  In reality, he actually did GREAT since he calmed down between 'episodes'.  I thought that was great!!

Before we left, the doctor made sure to mark in the boys' chart that I was to absolutely go back with them in the future.  I don't understand why most dentists have issues with parents going back with their kids.  There's really NO WAY I'd send my nonverbal kids to go in to a room where they may or may not be restrained by strangers in order for them to be able to have their teeth cleaned.  No way, no how.  Brianna... maybe.  She can talk, and she sits well, and she really wouldn't be any fuss.  The other 5 w/ Ds and CP? No way!

We were DONE at the dentist in just 90 minutes! The same amount of time it took last week for Aleksa and Emma to be finished as well. YAY!  We hit the road, got a super non-healthy lunch at McDonald's (well, chicken anyway... not SO unhealthy unless you watch those pink paste things on FaceBook...) then got back on the road by 11:45 to get home.

We got home early, in time for me to save Michael a trip home from the church to bring Lynae home from KAD, so I swung by home, picked up Kristopher's karate clothes, dropped Micah off with our one sitter so he could start on a nap, dropped off our sitter that went with me so she could have some time before she had to get to the college for her afternoon class, and headed up to the church.  On my way I realized that Brianna had gone to karate last week as well so I called Mike to see if he was planning to have her do karate this week as well.  He was, so she stayed at the church for the afternoon, Lynae came home, Mike didn't have to leave work, and when he picked Kris up after school, he wasn't going to have to come home at that time since both the little boys were home with me already (their class naps at 12, so I don't send them to prek after 11 or 11:30 if they're out in the mornings!).

Our sitter at home hung out for a while until her ride made it, and I then spent the afternoon working on a scholarship application for Kris next year.

There are enough days that things all go CRAZY, and nothing works out right... so it's always REALLY nice when days like today happen when, though busy, they all WORK!

So thankful for a day when things go right, and for the help of both of our sitters that helped it all to work out just right today too!!

Today started out...

With a load of dishes (thanks Mike!), 3 loads of laundry, 8 kids up and dressed and fed breakfast, meds given out, teeth brushed, hair brushed, three boys off to school, a shower for myself, a friend coming to babysit and our house fairy coming, all before 9am. And then... The day changed.

Then I remembered that Emma may need antibiotics before her dental cleaning, and I rushed around trying to print off the new(2007) standards showing she in no way was in the window of people needing them... Just in case the dentist wanted to see them. Then of course it wouldn't print at all, so I messed with the printer. Then it ran out of paper during the test print it was running. All three ink lights were also on. Then I got the document to print, but somehow the information about congenital heart defects was blank. Seriously... Blank.

I figured this must be a mistake and tried printing to a .pdf instead of to the printer. And it did it again. That entire area was simply blank. Next I copied and pasted to a Word document and from there was able to print. How strange!

Aleksa, Emma, and I went to the car at 9:10, when I was planning to leave at 8:50 or so for a 10am appointment in downtown Orlando. As I said goodbye I realized my purse had been left in the big van... Which Mike drove that day. We walked out to the car with the realization that I'd have to drive to the church before leaving town, and got to the van only to realize that the vest I use for Emma in the mini van was not there. Thankfully we have Radian carseats that have high weight capacities (she's over the 40 lb limit for most car seats) and with a little adjusting she was in and the three of us were off.

We stopped by the church, grabbed my purse, programmed my phone gps with our destination and we were off. I even called the dentist to let them know we were a bit behind and without even asking our names they waived it off as "fine, not a big deal". Maybe... they are really used to downtown traffic. Or maybe, I was one of the only morning appointments without a Spanish accent :).

We arrived about 10 minutes late but the wait wasn't awful, despite the 21 people standing in the waiting room which had park benches lining the walls which would seat only 12 people! Emma went first, since I knew her anxiety would just grow and grow if she had to wait for Aleksa to go. She did really well, though it was definitely a struggle for her to tolerate. She was really good, though :). We have known her teeth were bad, however we have been trying to get her in to the dentist for over two years without it working. Today was the day! Emma has 3 cavities and has two baby teeth that aren't coming out, however her adult teeth are already in behind them. She is having a sedated procedure scheduled to take care of those things.

Aleksa did ok... Though even though she understands more (as far as her ability to understand more complex thoughts... Not her ability to understand words or to be obedient...), she still behaved worse. Let's just say I'm not surprised. I held her mouth open and she whined and fussed through it all, but it was done. She has one cavity and one baby tooth that needs to be pulled-- same as Emma-- because the adult tooth is in behind it. She, too, is being scheduled for the procedure to be sedated. The other option was a full restraint and local anesthesia in the office. With neither of my girls would do well with at ALL, especially considering their pasts!

Michael came home at lunch time to relieve Chris from childcare duties and eat with the kids while the girls and I drove home for a quiet afternoon at the house with five of the kids. Michael also brought the boys home--very thankful that he can do that!!-- and we had a good afternoon with 8 littles and myself as well.

Since Michael had a meeting tonight, he didn't come home between work and the meeting so he could make up some of is missed time during the day. That left dinner to me, which was just fine. Dinner was made and served about 5:15, then baths for the 5 that have places to be in the morning, except for a detour where James and I had a battle of the wills over whether or not he would drink more than 1/2 oz for dinner. In the end, he had roughly 8 oz in his stomach, therefore I believe it's safe to say that I won that battle. He stopped his lovely angry fit and answered with "yes ma'am" before heading off for the second torturous experience of the night... Bath time.

Between his dinner and his bath, meds were done and teeth brushed, Kristopher got his shower, and the kids all headed off in their respective directions for bed. Kristopher read to the girls for 10 minutes before getting his lunch ready for tomorrow and getting himself ready for bed, and after the torture session of one of the fastest baths ever, James took a nice long diaper-clad cuddle on my chest before getting his pjs on and heading off to bed himself. With lots of hugs and kisses and I love you's thrown back to me with sweet little doe-eyes. Even if I am the evil mommy that makes him eat...

Wesley was last to be talked in to eating the rest of his dinner, but with him it's a pointless battle most days. He got pjs and off to bed with Kristopher by 7:45, just in time for me to go sit in the girls' room and ask them continuously to stop giggling, talking, getting out of bed, and better yet... Jumping on their beds!

Mike got home about then, and relax time set in :). For some reason the girls all recognized that when Daddy was home they'd best just go to sleep... ;)

Today's long day will be followed by a restful Tuesday! One where five kids are off to their activities in the morning, I set up our meal menu for the month and maybe even grocery shop, and we have no plans at all for the day :)

Thankful that this week we have no appointments on Tuesday and Wednesday, that I have our new sitter coming on Wednesday for a bit just so I can get things done around the house, and on Friday all the kids AND MIKE have off for Good Friday! We also have a sitter coming a few hours on Friday so Mike can get out and just to prepare for a Holiday weekend! Looking forward to a great week this week and a fun weekend as well!

And... I'm glad Monday is over with!!! :)

It's SPRING! :)

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??

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!  :)

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!

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!!! :) :)

"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/

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!

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.

(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 :).

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

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.

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

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 :)

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!

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 :).

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... :)