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....

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! :).

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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!!

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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...

Wednesday, January 18, 2012

There's someone growing in there!

This afternoon we had the first OB appointment for this pregnancy, which, yes, is really pretty late in the game :). But, that's how they do things now, so, we go with it. I'm almost 12 weeks along and baby is doing great. And YES, for those of you on the twins bandwagon, you can jump off it now because there is most certainly ONE baby :)

We were able to hear the heartbeat and had a quick ultrasound to take a peek. They only did one measurement (head) and it was just for kicks, but the baby measured almost a week ahead. That is pretty normal, and such an inaccurate measurement at this point that it really doesn't mean anything (except that the baby is growing well, since it wasn't measuring several weeks behind). It will also keep us from putting too much stock in the date that they scheduled our c-section (having had a natural birth-gone-bad then an emergency c and Lynae was then a planned cesarian, this one didn't need much discussion!). As it is, looks like baby #9 will grace os with his or her presence on or around July 31st! Lynae was born on the date. They scheduled for her when I was 8 weeks pregnant, so it's pretty likely that, barring a reason to come earlier or an emergency for someone else that needs to bump us, we will be having a baby that day!

Isn't that weird??? I thought it my entire pregnancy with Lynae too... So strange to not have a guessed on date like a due date that means give or take 2 weeks, but an actual date scheduled at the hospital already just over 6 months in advance...

The outlook from here as far as appointments and such goes, is that I will go back at about 15 weeks. We will have an ultrasound for health, measurements, and gender about 18 weeks. At 19 weeks we go back to the doctor, then see the high risk team for a level 2 ultrasound between 20-22 weeks (this is because of Brianna's heart condition and that Lynae also had a minor issue). At about 23 weeks back to the doctor and again at 27, then every 2 weeks until delivery! That means at least 11 more appointments within the next 6 months plus lab work and anything that 'comes up' unscheduled. Now to make that calendar and my kids' calendar match :)

Edited to add...
The doctors office must have sent us home with reading material for the next 6 months... At least 6 magazines, a pregnancy calendar, two booklet thingies about pregnancy, a bag, etc... I don't remember all that with baby number one and two, but I do with baby 3. Fun stuff :)

Name that random object...

And no, I don't know the right answer! 

I'm thinking a piece of a rocket, missile, or aircraft.  None if which would be unusual to see in our town.

The story behind the picture is that the driver couldn't make the turn due to construction barriers on the inside of the shoulder underneath an overpass.  I was pulled up at the light needing to take a left, but it was obviously blocking all traffic in every direction, so I got out and stood where the driver could see me in his mirror to show him how many inches he had before htting the guard rails.  After 3 attempts he made the turn with an inch and a half or so to spare... That was my excitement for the day...

Anyone know what it is?


Monday, January 16, 2012

The Little Drummer Boy

I was tuned in to a new blog in the past few weeks.  It's not a blog that's "fun" to read, in fact, it's HARD.  THe blog is of a mom and her son, a little boy with severe EB, which is a skin condition where any friction or pressure on the skin leaves large sores.

Little Tripp is just a few months older than our 2 year old, Lynae.  A beautiful little boy with a smile that showed in his entire being.

And yet his body was always covered in bandages, his hands missing fingernails, his skin just peeling away.

This past week, Tripp went Home to Heaven!  A day to celebrate, for sure, because he is no longer suffering in pain, the blindness that was caused from his condition over time, and the swelling that had overtaken his little insides...

This little guy is one of those babies where you say "thank God he is free from the suffering," and yet we wonder why God allowed it all in the first place.

Truly, a life like his, with SEVERE EB (there are lesser extents of EB as well where people live long and fulfilling lives with much fewer complications, though always a painful disease), is what I picture when people talk about kids with Down syndrome "suffering through life."  Our kids don't suffer, but this little guy SURE did.

But then, I think... Did that make his life less worthwhile?

Not for a minute.

If you have a chance to look, go to his blog (posted below) and check out the 'video' tab.  Click on each of the top two videos.  He's a happy, playful, demanding, sweet 2 year old little boy!!  And he has some great rhythm!! :).  Those videos, if you couldn't see the scabs and sores, are the picture of absolute happiness! And for him, DESPITE the scabs and sores... he is delighted!

No, he didn't live a long life, and yes, there's no question that he suffered.  But really, is there any reason that even a life of suffering is not a "worthwhile life??"

Our continued prayers go out to the entire family as they grieve the loss of little Tripp, even as they rejoice at his Homecoming.  He was his momma's ENTIRE life.. her every moment was devoted to him, quite literally, and I imagine those empty spaces are going to be very difficult for her.  Especially in these early days without him to fill her hours...

http://randycourtneytripproth.blogspot.com

Sunday, January 15, 2012

Poor kid...

Micah has major sensory issues in several areas and one of those is with food.  He won't eat anything that is dry.  Dry cereal, dry bread, dry crackers, etc.  He also doesn't chew well, though he does now know HOW to chew. 

Today I decided that if I was making chocolate chip waffles, he was eating them!!

And this is his poor distraught face after devouring the entire bowl of cut up chocolate chip waffles...  He enjoyed it!


Wednesday, January 11, 2012

Some Cornish randomness

  • Lynae used to try to keep herself awake by crying... now she plays.  No toys, no nothing, but she still plays.  She is singing the ABC song (amazingly well except for LMNOP), counting her fingers,  and making any and all attempts to engage her sisters.  She's very successful.
  • Lynae has a new favorite toy.  It's a Cabbage Patch Kid 'toddler' she got for Christmas.  It came with a pacifier.  This time last year she would bug me for her pacifier all day long.  Now, she bugs me for her doll's pacifier.  
  • Micah had no accidents throughout all of Christmas break- literally NONE at home- except for one where he stopped himself while we were at the doctor for an ear infection (and the doctor was checking his ear).  He's been back in school for 3 days and had a BM accident (which he hasn't had in MONTHS at home) yesterday and today he wet.  Hmm...
  • James decided today was the day to begin attempting to use the toilet.  He went twice at school today! Now if he can start holding it between going... since he's been going in the toilet AND diaper at home for months...  He just doesn't ever hold it between and doesn't generally go on the toilet at school.
  • Emma and Aleksa are doing well at school, but the old behaviors (before Christmas) are starting to slowly crop up already.  Here's hoping they can be stopped before they get in full swing again... 
  • Wesley is still not eating well.  He ate a total of 16 oz all day yesterday.  Not. Good.  Today we got in 24 oz.  Tube, here we come...
  • Kristopher is glad to be back in school and is enjoying it!  He had karate yesterday and youth group today, which he hadn't been to in a month.  Kris also made two new friends over break.  They happen to live in the same house as one of my childhood friends did, just down the road.  Kristopher has been riding his bike between their house and a friend across the street and enjoying his new found independence!
  • Brianna started back part time with home schooling a few days ago.  She's asking to do the new computer based phonics program, though she needs a bit of help with it still.  I think she's glad to be back to familiar routine a bit and having some more time 'alone' during the day when some of the other kids are at school.  She and Lynae started back at KAD (mom's morning out) yesterday and both were SO excited to go! :)
  • As for me, morning sickness isn't in the morning.  It is 24 hours a day, 7 days a week, so far for about 5 1/2 weeks.  Maybe.  ending.  soon.  I'm about 10 weeks now, and hoping to see a cessation in the next few weeks!

Friday, January 06, 2012

I decided to dream big

In regards to my children's schooling next year... I've decided I want to dream big. What does ideal for each of them look like? What does ideal for our family as a whole look like? What is the combination of those two ideas put together? And what parts of that can translate in to reality?

What is the desired result?
What time constraints do we have?
What parts of life with 8 (or nine...) kids makes some things more or less realistic for us?
What therapies do we want each child to receive, and how does that work in the great plan of it all?
What financial resources are required to do each different part of it?
What physical resources are needed?
What type of man-power would be necessary to accomplish the goal?


And from there... We will see what kinds of changes may be coming for next year, if any.

We will have all of our kids out of pre-k and Lynae won't be starting for another year. We will also have a newborn... The school age kids will be kindy, kindy, first, first, third, third, and third. Kristopher and Brianna are the two on, over, or near grade level, and they will be first and third grade. It's a lot to think about, but it's well worth the time and consideration to know that we are being intentional about our children's education and plans for their futures!


**note to my kids' teachers... This doesn't mean we aren't happy with where they are, and we are not moving anyone this year :) We are simply looking forward and know they won't all be in the same situation next year and we want to be intentional about where they ARE :). We are VERY pleased with all of the teachers and aides this year!! I kind of wish we could just know that they would all be in the same situation next year, but inevitably they do get older and change is inevitable... :)

Yep, we are expecting :)

Despite my discreet announcement, I keep getting questioning emails and messages that sound like someone's afraid they heard wrong... :). So... Here goes....

We are expecting a new Cornish to arrive in the end of July or beginning of August!

God began to reveal His plans while I was in Bulgaria just after Thanksgiving with some more confirmation while flying home (morning sickness kicked in big time in the Munich...) and confirmed after arrival back in the USA. We are excited about the addition of a new baby to our family!

I have had some significant morning sickness... More so that I've experienced with previous pregnancies even. It has made things a bit more difficult around here, but with each new season of life we adjust to what God has for us and make it work!

Your prayers are appreciated for health for our family including God's new little creation... And if you have any morning sickness remedies, feel free to share :)

Thursday, January 05, 2012

And five days later...

It has been such a great break from school! This longer than usual break for Christmas makes me dream of summer time and of not having to be on a school schedule! We started back part time homeschooling Brianna since she missed some days while I traveled after Thanksgiving. Now she and I are working on school during the other kids' break to make up for the missed days.

We have also been spending some time outside in this beautiful weather! It has been chilly but not cold until Tuesday. Then it got to be cold :). Even a Florida cold is still over 50 and a jacket can take care of that! Emma, Brianna, and Lynae have been learning new tricks like pedaling a tricycle or riding a scooter. James has been trying out more and more activities without too much prompting and is the most excited about the pre-bike that they got for Christmas. It's a bike. Made for toddlers to teach balance, but it doesn't have pedals to get in the way. Google it or check it out on YouTube to see some interesting videos of the things some little kids can do on them! So far no great success, but James really wants to try!

We just got two new helmets so ALL of the kids will now have their own. In the last year we've been sharing them and resizing and driving ourselves nuts :). Now they can all have one and we can. Just play!

Brianna turned six on Tuesday and on Monday evening we had a few family members over to celebrate her! She enjoyed it and has carried around a card shaped like the number six for the last two days. She even slept with it last night! We ask her how old she is and she says "five". Then we say, "no, you had your birthday, now you're six!" and she says "I'm six!". Then we say again... "so, how old are you?" and her answer is always the same. "Five."

Yesterday we had a BUSY day! We got up earlier than our winter break days have been and got going right away. Michael and I and six of the kids headed down 45 minutes drive to a doctor visit at the ENT for all six of them. Here's what happened with each:

Aleksa: failed OAE (hearing test). Failed tympanogram (tests the ear drum function). One side indicated fluid or possible fluid. The other was 'unusual' and not fluid but still failed. She will be having a sedated ex am and possibly getting tubes during that procedure.

Emma: failed the OAE in one ear, passed the tymp. She goes back in 4-6 months just to recheck.

Wesley: he isn't there for hearing, he's there for possibked sleep apnea issues discovered after his surgery in April. We are going to do a sleep study just to be sure whethr something's going on or not. That's being scheduled...

Brianna: passed hearing, ears are clear though she still has a small hole in one ear drum from previous tubes that didn't heal up after the tube came out. That's been there for almost a year. The doctor mentioned a poor eustation tube function to Michael after I had to leave. Not sure what he meant by that if her OAE and tymp were both fine... But she gos back in 4 months...

James: no issues! He hasn't had much sickness at all since August except strep when the whole family had it! No ear infections, no issues... He goes back in 6 months just to recheck but... Yay!

Micah: though he just got over an ear infection, his tubes still look good and aren't clogged up even from the drainage. He shouldn't get so many ear infections, but he already has tubes so what else can you do? He go back in 6 months.

All together not so bad. One sedated exam and one sleep study in the works of being scheduled.

I had to run out before the appointments were finished because despite our 9 am ENT appointments, I also had an appointment that was equally as difficult to schedule for Wesley to have his EDG scope done at the hospital an hour from there. We were supposed to be there for registration at 11 am... So I should leave the ENT at 10. I stayed until 1030 because Mike was just finishing up with the last child that needed a hearing test at that point and only needed to talk to the doctor a second time about two of the kids. I managed to do all six kids' first round (while Mike kept the rest of the kids then began cycling through with the audiologist with those that needed hearing tests). And I did the second visit with Aleksa after her hearing test.

Then, I drove to the hospital and was glad not to hit traffic! I got there at 1130 and they weren't busy so it worked out just fine! His procedure wasn't scheduled until 1 and we went right through registration, met with the anesthesiologist and the doctor and got him all ready to go back. They gave him a pre med since he was fussing every time anyone came in to the room to talk... He doesn't love doctors... He was almost asleep except for his occasional giggles when they did come to take him back to the OR.

An EGD is an Endo-gastro-duodenal scope. Basically goes through the throat, stomach, and into the bottom of the stomach area to look at everything. This was done because he still is having a hard time getting in enough calories in a day to gain weight. In the last year he has gained only 3 pounds, which puts him weighing 3 pounds more than our tiny 2 year old. Wesley will be 6 next month. We switched to an all liquid diet with him in the summ because he was losing or barely maintaining weight on a regular food diet. This is why he is so small to start with, because in Ukraine he was given whatever he ate in whatever time they decided to feed him in, and then when they were done, he was done too even if he didn't eat it all. We of course would sit there for him to eat it all, but sometimes that would take 2 hours! When we went to a Pediasure diet he began gaining veery slowly. We have also done an all blended diet, but he goes back and forth between refusing the blended and refusing the Pediasure.

On top of all of that, Wesley loves to EAT. He gets mad when he's given a drink and we are all eating. If he finishes the drink, we will offer him some food, but often he won't drink and it becomes a meal of battles. We tend to have cycles of this, but it is wearing for him and us to do. We don't want to fight with him to drink three meals a day every day! And, we wan thim to be ab le to enjoy meal time, not to suffer through it...

The scope was all normal, which is good and bad :). If there was something like evident h pylori or something like that, then maybe there would be a way for him to gain on a different diet after treatment. Of course you never hope for parasites, but at least they do have a cure... As it is, it looks like we are probably looking at getting a g-tube in the next few months. That way we can tube feed him the required liquid calories when it's not meal time, and let him eat some real food with us when we are all sitting down to eat. Yes, we have tried giving the Pediasure between meals like this... He fights us on it and then ends up spending HOURS at the table, both getting his Pediasure and when we are all eating. He also ends up not drinking the pedasure most of the the time and we have to I've it back to hum at meal time instead of food again anyway since he has to have the calories...

So... Yesterday was a long day, leaving the house at 8 and getting back home at almost 5pm after seven doctor visits and 3 hours of driving between them.

Today is a lazy day at home! No school until Monday and a beautiful Florida winter day with a high of 65... Time for bike riding and scooters and sidewalk chalk with a picnic lunch outside :). Then cozy naps and an afternoon with four kids' speech/feeding therapy sessions...

Sunday, January 01, 2012

If you don't have time to read the entire year in review...

You might want to skip right on down to December in the previous post :)

Happy New Year!

From the Cornish family to yours, we wish you the best in 2012! May our God of Peace, Restoration, Healing, and Blessing be alive and well in your heart, home, and family and you find new depths within His goodness and mercy this year!

For us 2011 brought a new beginning with our family of 10! We welcomed Wesley and Aleksa home as 2010 rang out, and 2011 has been a year of growth in size, health, and development for all of our children, but especially our two newest additions. It brought a lot of firsts for James as well, who also joined us in 2010!



In January we brought in ther year with Brianna's 5th birthday and 40+ doctor and therapist visits between the eight children. Well visits for four kids, new specialist appointments for Wesley and Aleksa, ongoing therapy visits for James and Micah, heart issues with Lynae, anemia issues with Lynae and Brianna and a scare that led toward research on possible inherited anemia. Thankfully the last scare was just that and the girls are both just fine!



February was brought in with Wesley's 6th birthday followed by Emma's 8th birthday and Kristopher's 7th birthday! In the midst of that was also 3 years since our adoption of Emma and Micah! We had a great visit with Lyndi and family for a nice long weekend, and we went from two to six glasses-wearers amongst the kids! We also began orthopedic appointments for Wesley and looked toward scheduling his tendon lengthening surgery in the near future as well as a plan to attempt to relocate both of his hips. In February I took some time for me and participated in a women's Bible study at our church with the support of a wonderful church staff that worked with us to let our babysitter have Wesley and Aleksa in the church nursery so they would be close by and I could still attend the study. Mike and I also took a 20 hour reprieve and got a great deal on a one night stay at a fancy Orlando hotel. A last minute set up with babysitters worked out great, and after a busy four months leading up to that day, we took the time to refresh ourselves and enjoy some time alone. We are very grateful to have a support system that allowed us to do that!  We also said GOODBYE! to bottles for both James and Micah in February!  It took more work for James, but after a long weekend without a bottle and ALL of the bottles gone... they were both on sippy cups!





March was a fun and busy month! Our first vacation as a family of ten was a 22 hour drive to Philadelphia, Pennsylvania for my sister Elizabeth's wedding! I was honored to be her attendant and we brought along a great sitter, Aimee, to help Michael with the kids while I was with my sister. We all had a great time visiting with extended family, meeting Elizabeth's new friends, and changing op our not yet established routine :). James, Brianna, and I also made our way over to Busch Gardens in March to meet up with James' foster mom and sister and the sister's new baby! It was so fun to spend the day with them and see James taking in the idea of both his 'mamas' in one place. He was in heaven! He liked the baby pretty well too and was glad to see Megan!







April was a long month with little sleep and much frustration. It began with a week in the hospital for Wesley's surgery and the news that his hips could not be relocated--ever. He wouldn't be able to stand or walk and likely would have pain later in life, but there was nothing we could do about it... If only we'd gotten to him sooner... That was the only thing the surgeon could tell us. Then home we went with Wesley in a Spica cast that went from his armpits to his knees with just a cutout for his diaper. In this contraption he needed constant attention day and night and cried every 20-30 minutes all night long needing to be repositioned. That didn't stop us from having a wonderful Easter with our growing family and enjoying the time together... Groggy as we were.


May brought hope with the removal of the Spica cast, the end of school, the beginning of summer, wonderful help from a new babysitter, and a renewal of sleep! We also had 4 or 5 IEP meetings in May in preparation for the new year, some of which were easier than others. It was the beginning of the end of Brianna's public school career, but we had a whole summer to go before we needed to worry on it.  Brianna, Lynae, and I also took a quick weekend trip up to see Elizabeth again in Philadelphia!  It was a nice girls' weekend while her husband was away and we enjoyed seeing her inlaws' horses as well as a train ride through Amish areas and just hanging out together!

 








June was great! It started off with Kristopher going to our church summer program, Summer CHAOS! We had fun adventures as a family to the science center and the zoo, we got in the swimming pool a bunch and enjoyed the warm weather and free schedule! Michael turned 30 at the end of the month and we celebrated with a game night with some friends. We ended June with a slew of tests to find out if we could pin down the GI issues James was having... Which all checked out fine so no causes were found.




July was HOT! We continued to enjoy the zoo and science center, our babysitter joining us for some excursions, and swimming, playing, and relaxing! In the middle of the month Michael and I celebrated our 10th wedding anniversary and did so with a weekend get-away to Orlando! Something we weren't sure we could pull off until it happened, we were glad for not just a run away refresh, but real time to enjoy each other and spend some time enjoying Orlando together. We spent two days at Universal Studios then saw LaNouba at Downtown Disney. It was a great way to celebrate ten years together and a lot of fun as well!





August ends our summer break, but it brought great things as well! We took James off of Pediasure to see what would happen to his hyperactivity levels and were amazed that his 2-3x/day spitting up episodes disappeared overnight! After a visit with GI, a Casein allergy was determined to be the cause. James turned 5 just a week and a half later and rang in his 5th year as his healthiest beginning in quite some time. School started just before his birthday and everyone was off to a good start. Kristopher, Aleksa, and Emma began 2nd grade, Wesley and Brianna started Kindergarten, and James and Micah began their k4 year. A bit of a rough start for Aleksa as we figured out classrooms, but she and Wesley began on a 3 day/week schedule and both acclimated to the classroom slowly.











September first was the anniversary of James' adoption! It was also the end of school for Brianna when the idea of a split schedule between inclusion and special Ed just wasn't to her benefit, and she began homeschooling and attending our church Kids'Adventure Days program with all typical peers 2 mornings a week along with Lynae (in different classes of course). September brought Lynae's 2nd birthday and Micah's 5th birthday, just one day apart! It was also the beginning of softball season for the church league which meant Friday nights at the ball field with all the kids to watch him play!  Michael and Kristopher took a get-away weekend this month and spent two days at Sea World and the Mosi museum in Tampa.  A "big guy" get-away for some special time with Daddy and Son, it was a lot of fun and an event to repeat again soon.  Kristopher also started taking Karate lessons this month!















October came in with a four day trip of Michael's for work and my first time on my own for a few days with ALL of the kids. Everything went fine and we enjoyed the different schedule even though we missed having Michael around. Aleksa celebrated her first birthday at home and turned 9 in the middle of the month.  The month ended with the annual Pumptober Fest at our church and our crew all dressing up as the "things" from Dr. Seuss. We had Thing 1-8, then the "Mother of all Things", "Father of all Things", and aunts, uncles, grandparents, and friends that all turned out to enjoy the festival together! We even won part of the costume contest :).








November was a busy month! It had great times and disappointments. A funeral for young friend and a first round of Botox for Wesley both happened in one day, followed by a trip to Tampa to meet a little boy who needed a family. We weren't meant to be that family, and that was clear, but there was some heartbreak in it as well. We began horseback riding lessons for Kristopher an "therapeutic riding" for our other 7 (including Lynae :) ).  We all started the month off sick, and ended it with our first Thanksgiving at home with just the ten of us for lunch, then a visit to my parents' house to see family afterward. The day after Thanksgiving I left to meet Shelley Bedford enroute to Bulgaria! We were going to bring home her newest daughter, Annikah!

 

 


December was short, but exciting as well. I started it out in Bulgaria and came home just a few days in to the month. Then it was tree trimming, gift shopping, Jesus talking, celebrating, playing, and more celebrating! We had a little something extra to celebrate, as we learned we will be welcoming in a new Cornish at the end of July/early August of 2012! in addition to some jet lag at the beginning of the month and a nasty sinus infection I brought home from Bulgaria, morning sickness had set in while I was flying home with Shelley, and that made for a bit of a rough month for me! We are so very thankful that Michael had almost two weeks off of work at the end of the year and the family time we have had together has been wonderful! It has also been great having him home while I haven't been feeling well.

Christmas Eve with Michael's Parents!











After Christmas Eve Church Services!








Cookies for Santa...



Sprinkling Reindeer food around the yard!



Christmas Morning at Home!














Christmas afternoon with Meredith's Family!






















 We are looking forward to a great 2012 and are so thankful for the joys and trials that 2011 has brought!  HAPPY NEW YEAR!!!!!