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!