Goodbye to a dream

Shortly after we adopted Iann I insisted that we trade in my lovely Nissan Murano for a Chevy Trailblazer with 3 rows. I wanted space for what would one day be our 3 kiddos to sprawl around in the car, and be able to take a few friends places with us too.

 

We sold that car last week. Mainly because it was a lemon - our mechanic recently told me it was time to push it off a cliff - and partly because I am becoming more settled with the idea that this is my family. A sweet little family drove over here from Salida to buy the car. They have 2 kids and 1 on the way so they were looking for a kid hauler.

I didn't allow myself to be too emotional as I watched them drive off because the boys were with me, but it felt like the end of a dream. A dream to have more kids, to offer our love to more children who are waiting to be adopted, to have a bigger family.

In my head I know that life with Iann will always be a struggle; that he will need so much of our attention for the rest of our lives. But in my heart I still yearn for another child. A wise friend once told me that I may never feel like my family is complete since Alex isn't here on earth with her. Maybe she's right. Or maybe there will be another child in the future. At this point we don't know. I just know that I am grieving the loss of that dream in the near future.

So here are a few memories of 'the boat' as we called it:

Driving home from AZ, Brynn always falls asleep when we get to Telluride

Tying down the Christmas tree 2012

He is just too proud of his thumb!
 

Thankfulness

My heart is overflowing right now with all the things I am thankful for. The past few weeks have been very hard for me emotionally since Iann's seizures have continued, and increased. Daily calls to his neurologist & emailing video of his seizures have helped us get him on the right medicine mix ... Hopefully. So I have been pretty down, antisocial and quiet. Add to that Jon's schedule switching to swings, and I am also dealing with an emotional 7 yr old who often only sees his daddy for a few minutes before school.

Earlier today I texted a friend that I was overwhelmed and wanted to cry. A few hours (and some hard exercise) later and I find myself unable to keep my thankfulness inside.

I am writing this on Iann's  iPad (don't tell him, he's alseep) so I will keep this brief and picture free. So here is a short list of the things I am thankful for:

* friends who leave me multiple voicemails/texts even when I don't reply
* working for my dad: many people with SNs kiddos have a hard time keeping a job due to time off we need to take for dr's appointments etc. Dad knows, understands & supports this ... how can he not since it is his grandchild :) Seriously though, dad could have hired someone else having watched what life with Iann is like these past few years
* a recently discovered, incredibly active & supportive Fragile X Facebook page. How did we get this far without you?????
*friends who encourage me to shed the weight I gained after Alex passed away: Lori for challenging me to run a 5k with her; Danielle for always being willing to listen to my workout sagas; and Ashley for sharing your Insanity DVD's with me. Insanity is the craziest thing I have ever done, but results don't lie
* a great church who support & understand Jon & I, and love and accommodate our kids. Jon & I got to experience the Kids Blitz music last week, awesome. Totally awesome. And Iann is loved, happy & terrorizing the little kids to his hearts content

As I said above this is a quick list, but a heartfelt one. I may be the one walking this road with Iann, but I couldn't be this far down it without all of your support.

So thank you.

Recent visits to Denver Childrens Hospital

Yes, it has been 10 months since I wrote a post, and what months they have been!! Overall life has continued to surprise us, in both good and hard ways. One of my 2013 life changes will be to cut down on Facebook time, and focus more on updating you all via this blog. I feel that spending time once a week writing a blog entry  will lead to less FB time, which I find takes me away from the more limited time I have with the kiddos and Jon.

I now work 32 hours a week and Jon has moved onto swing shift after his recent promotion to Sergeant. (Go Jon!!) Thankfully we both have the weekends off so we'll get to focus on family time then. The rest of the week Jon and I will be sleeping in the same place but not getting much awake time, and Brynn will get a few minutes of snuggle time with his dad in the mornings before school.

Before outlining our recent trips to Denver Childrens Hospital, I need to let you know that these people are INCREDIBLE. Every time we go up there they go out of their way to accommodate us and get us the appointments we need so we dont' have to return too many times.

Iann & I made our annual trip up to Denver in September, to see his developmental pediatrician. She is super pleased with his progress, really impressed with his use of sign language and continued cognitive advances. We also saw an audiologist who told us he didn't have hearing loss, so no more hearing aides. Good news but not impressed with the folks in GJ who have had him wearing them for 15 months!!!! Dr suggested we schedule a sleep study to see why he snores so loudly. Is it obstructive sleep apnea, which can be fixed by removing his tonsils or is it more serious, requiring a CPAP machine? (shudder at the prospect)

After scheduling the sleep study to coincide with picking my brother- in-law up at the airport, we went back up to Children's in November to learn how to desensitize him to all the stuff they put on for the actual study. I guess it worked b/c here is his a few nights before heading up for the real thing:

Iann all kitted up in preparation for sleep study

To add to all the excitement Iann started doing something funky with his eyes a week before our trip to Denver. They roll up in his head, he blinks, and they are back to normal. This happens over and over for up to 30 minutes. After seeing it twice in one day I mentioned it to Jon, who told me he'd seen it too, and asked if I thought it was seizures. I was very happy that he voiced it first because I didn't want to be the one to say it out loud. So being the mama bear that I am, I scheduled an EEG and neurology appointment for when we were already planning to be at the hospital. Iann did amazingly well with the 25 electrodes being put on his head ... of course watching Thomas the Tank Engine on his iPad probably helped:

Watching Thomas while the EEG tech hooks him up

Once the test started Iann tried his hardest to do what was asked of him:

Blowing on a pinwheel

He did find going to sleep a bit of a challenge, however after Jon and I basically laid on top of him he did give up the fight and sleep for a little while:

 

 

And he was super unhappy to be woken up 15 mins after going to sleep, but in the end we got what we needed :)

 

Crazy hair with the electrodes removed!



An hour or so after completing the EEG his neurologist confirmed my suspicions that the eye rolling activity is seizures. Oh, and this great news was delivered after telling us that only 10% of kids with Fragile X Syndrome have seizures. Why build up the hope only to dash it?? We will be switching pediatric neurologists in the near future ...

After the neuro appointment we headed to a friends house for a quick McDonald's dinner. Jon stayed overnight at their house while I got to stay in the hospital on the comfy parent couch, listening to Iann snore all night! Obviously all our hard work at home getting him used to the sleep study paid off, since he konked out right away and slept all night!

The results showed moderate obstructive sleep apnea, with his brain arousing his body to start breathing again up to 7 times an hour. In other words he is never reaching the deep level of sleep that allows our brains to restore and reorganize the events of the day. Our next step to a visit with the ENT in Junction to discuss removing his tonsils. This Dr removed Iann's adenoids a few years back and we were happy with his performance then, so we're are thinking we'll get the tonsils removed at St. Mary's and then if there are any bad after effects shoot up to Childrens at that point. However, after we see the ENT in a few weeks we'll know better what direction to go.

There is never a dull moment with this sweet boy. And he really is a sweet heart. He is trying hard to use his voice along with sign language, really beginning to master a few words. He is mostly happy, unless we won't let him play on his iPad when he's decided it's time, and we are so thankful that he hasn't shown any signs of aggression ... yet!

All about Brynn

One of my jobs as a mother is keeping things even between my 2 boys. I feel like I blog about Iann a lot, so here is one all about Brynn :)

On Friday night Brynn took his third karate test to become a two stripe yellow belt.

He was one of 3 boys going for the same belt, and was at least 3 years younger than the other two. I took a video of him doing his kata, but can't get it sent off my phone b/c it's too big. I think he did really well, but we don't find out until the end of the month if he passed this level or not.

Then there was the day last week when he turned the hose onto what will be the vegetable garden and turned into a mud monster:

This afternoon my dad took him up to a friends ranch, to help feed the lambs. Dad said he did this at about Brynn's age, and remembers laughing and giggling the whole time ... just like Brynn did :)

He really looks like I did at that age!!

Poor girls. There's going to be some broken hearts one day!!!

Hungry lamb sucking his thumb until the bottle arrived!

Can't you just hear him giggling????

I love this little man so deeply it is sometimes frightening.

Good night world

There are times when I think about putting the boys in separate rooms, and for good reasons: we have the space, I wouldn't worry that going in to resettle Iann in the middle of the night - or early morning to get him up - will wake up Brynn, and more. And then Jon goes to make sure Brynn has turned the light off and snaps these sweet pictures. I think they belong together ...

This picture of Iann also serves to remind me of what a sweet, innocent little boy he is.

The last few weeks have been REALLY hard with him, but he doesn't mean to get out of control. He doesn't do it on purpose, his body just goes a little haywire sometimes. We weathered this storm last summer, when the same thing happened and I think we are seeing the laughing tantrums rear their ugly heads less often: only one major one today. And, nothing at bath time.

You may be asking what is the deal with laughing? Well, it's not funny laughing, it's 'my body feels out of control, so I'll laugh,' which turns into kicking, headbutting, terrorizing the dog etc. Thankfully, he isn't actually being aggressive with this; the kicking and headbutting are things that give his body input and sometimes we get in the way while helping him calm down.

So we try to give him input in other ways: Jon set up our trampoline, I am giving him big hugs and squeezes all day and doing some other OT type things. Also, his behavior therapist has really seen some of his doozies in the last few weeks and has helped us learn how to deal with them and calm him down, or even stop them before he escalates.

It isn't easy. This is one of the times when I don't think life is easy.

See, during calm periods - which we tend to have more of than not - I secretly think my life is easy compared to others: a friend with a 7 yr old and twin 3 yr olds, or my sister-in-law with twin 2 yrs old and a newborn! But then we move into one of these cycles and I take it all back.

This is hard.

But, this is the life God has for me and, as Jon's Nana likes to say, "This too shall pass ..."

Spring fever? More like spring flu!

In the words of Dr Meo to Brynn last Wednesday "You haven't been here all winter, and now you the spring flu & an ear infection & crazy eyes???"

That sums up the last 2 weeks around here:

I started it: went to bed on a Tuesday afternoon and slept for 30 of the next 36 hrs. My body ached. I was sweating and shivering. The light from my phone's screen was too bright.

Iann spiked a fever on Friday afternoon; it was up to 104 by early Sunday morning. I was sort of paralyzed - another son with 104 temp on a Sunday morning, and it was too early to call anyone. There was NO WAY I was taking him into the ER, way too deja vu, so I called my sister in England who talked me into a calmer state.

Iann stayed home from preschool on Monday, and Brynn had a fever when I picked him up from school that day. Iann went to school Tuesday but was worn out when he got home. Both boys were on the couch on Wednesday, Iann back to school Thurs, and both on Friday.

The child who can't sit still was lying around and super cuddly all week

Brynn's flu took hold of his eyes: the left first, then the right. 

I am happy to report that they are both doing great now. Just went down to see what they were doing. This sums it up:

Crunching the Numbers God's Way

What do you get when you cross a CO State Corrections Officer with a stay-at-home-mum, who works aprox. 11hrs a week?  Oh yeah, and throw in a special needs child? A financial journey that only God can make add up :) 

We were able to afford to adopt Iann in large part from a very unexpected inheritance. We didn't ask anyone for help (apart from plane tickets from our parents), we did no fundraisers or things like that. I think those are all great ways to fund an adoption. but not what we chose. To make up the difference we took out a small loan, that we paid off last summer with the adoption tax credit.

What we didn't take into account, what we couldn't have taken into account, was the cost of raising a child with Fragile X Syndrome, autism and hearing loss. 

Sure, we have insurance. The State provides it's employees with pretty good, but costly, insurance. Most of our co-payments for Iann's therapy are $50 a pop, one is as low as $30. There is a state insurance program that we financially qualify for,  that would cost us about $20 a year in premiums and $5 a therapy session, however the children of state employee's are not eligible. Catch 22.

When Iann was diagnosed, we immediately got him on the wait list for 2 medicaid waivers - one for kids with autism, one for kids with long-term care needs. Medicaid will pay what our primary insurance doesn't - co-pay's, deductibles, etc. The wait list for them both is 2-3 years.

For the first year of this journey, my dad pretty much underwrote Iann's needs. Now, he supports us by paying me to work in his insurance company. We swallowed our pride and approached our church, and received a very generous check that helped for a few months. Then, we got a chunk when we sold Jon's car. Now, that money has almost all been used up.

Some of you may think that I am being too transparent with all this, wondering where I am going? Give me a paragraph or two and I'll get there.

In our almost 10 years of marriage, God has always provided means for us to pay our bills. Many people are still loosing their houses, having their utilities turned off, etc. We are nowhere near to experiencing that.  And I realize that we are lucky not to be. Jon has a steady job, from which he will never be fired. Again, we are lucky there too.

So, yes. I am worried about how we'll meet Iann's monthly needs when the money from Jon's car runs out. It would be dishonest for me to pretend otherwise. And yes, there is more to our financial situation than just Iann - Jon's back and my multiple surgeries in the last few years are still things we're paying on. Along with one or two things we probably shouldn't have bought.

Bottom line: there have been months when I don't see how all the bills got paid. I do a budget at the start of the month, and we sometimes don't have enough coming in, to cover what needs to go out. But, somehow we do. I don't go back and check every little thing at the end of each month, I just thank God for whatever happened and move onto the next one.

One of my biggest worries lately has been our tithing. We just flat out don't have enough money to tithe the expected 10%, or really anywhere close to that. There have been times when we did, but not since God gave us Iann.

And there's the point.

I truly believe God plans out who are kids will be. Of all the Korean boys born in August 2008 who were put up for adoption, God earmarked Iann for us. I truly believe that. Now, let's not get into what would have happened if Alex hadn't passed away, because I can't go there. He did and so we adopted Iann.  God could have placed him in the family of a lawyer, or Dr. or architect.

But he gave him to us.

I believe that every time we pay for a therapy, a sedated hearing test, a Dr's visit because of another cold/sinus infection, another set of tubes in his ears, another set of braces for his ankles, etc. etc. etc. we are giving back to God. After all, what else is a tithe but giving back to God some of what he gave to us?