Wednesday, August 21, 2013

It's a....

We found out Will is going to have a little sister in January 2014! We had the anatomy scan done and everything looks really good with baby girl! She is measuring right on track.
We had a tricky time getting her to cooperate as she had her rump towards us the whole time. Finally, the technician was able to see what she needed to see.
We told Will he was having a sister and he said, no, I want a boy. Then as I was putting him to sleep he wanted to know when his sister would come out and change to a boy. Poor guy. We probably should have just kept things quiet with him, but I haven't been able to pick him up since the IVF transfer happened, so we had to give him some sort of explanation!
Neil and I are really really excited to have a girl on the way. I'm pretty confident that Will is going to be excited to have a girl, eventually. Before we knew the gender, he always talked about changing her diaper, or feeding her a bottle.
Little foot

Baby girl's head at the top and her body, folded up like a pretzel.
I give up on trying to figure out how to get ultrasound photos to appear correctly. 

Tuesday, August 13, 2013

River of De'Nial

I tried looking for it, but a while back, like a year ago, I posted about realizing I was a parent to a child with special needs. What an obscure title. What does that mean? Every child has special needs, mine just has more than the average kiddo.

Thankfully, it's usually really easy for me to see only the good, to celebrate each achievement and typically not dwell on the fact that his achievement could be two years later than his peers or that he could not be able to do it well the next time.

However, I think I've been dwelling in that bad place for a week or so now and since this is a type of therapy for me I just need to word dump.

It's so easy for me to surround our family with people who "get it" or do things with people for such short and easy periods of time that I don't notice (nor care to notice) all the little things that set Will apart from their kids. I call it the River of De'Nial. It's a lovely place to be... denial. It's the only place I can really attempt to live in the moment and enjoy my beautiful son for who he is today.

NO MOMMA! I will not smile for you. Now get down here and build this train with me.

We recently went to Galveston for a weekend with three other families and their kids. All in all it was eight adults and six kids of varying age ranges in a beautiful house with enough accommodations for everyone and a pool! We arrived on Friday night.

Will was tired after a long week and no nap that day at school. He was trying so hard to keep up with the kids his age (all girls) but it just wasn't working. It was obvious to me just how far away he is from physically being able to do everything. I wanted to leave that night. It was just too hard to watch. He kept trying to play dress up with them or whatever sort of games 3 and 4 year old little girls come up. Eventually he was the "dad" of the game and that seemed to make him happy.

He went to play with the "baby" of the group - a one year old boy and I realized that was physically easier for Will than trying to keep up with the others.

I just felt so defeated and sad for him. He works so so so hard to just walk across the room and the girls were going back and forth with a speed that he'll likely never know. Neil and I shared a hug and some wordless conversations about how we both were reacting and agreed to power through our own sadness to make sure Will enjoyed himself because we knew after some rest he would be better the next day.

I'm glad we powered through because Will achieved a major milestone - at least in our eyes. At the beginning of summer I got Will this floatie device that is on his arms, chest and snaps around his back. He's done a good job with it, but has never really been on his own in the pool with it. Well, Neil is way more brave than I am and just got Will swimming on his own with the floaties while I was running to the store.

Seeing the look on Will's face while he was showing off to me how he could get from one side of the pool to the other all by himself. I about started crying. He just had this look of pure joy and the satisfaction of something he did all by himself.

Hard to see his smile, but I will forever remember it.

Playing with his girlfriend. Note, I am actually not hovering right over Will - shocking! :-)

Achieving independence for Will is tricky. He is mentally and socially available, but physically there are constraints. It's nearly impossible to create a safety net for him while you're not in the same room. There are very few people in Will's life that not only understand his physical limitations, but work diligently to ensure he is still safely part of the party. I am thankful that in Galveston another parent understands this about Will and that made my heart so thankful.

The Monday following our return I met with Will's speech therapist to go over his results from the three tests which track his progress. There wasn't anything "wrong" or super bad on the results, but it was really very difficult to hear the therapists read directly from her notes she has to submit to insurance.

In order to get an insurance person to understand why the child qualifies for therapy services you have to explain the disease properly. Just hard to hear the words lesions, delayed, regression, progression, Leigh's Syndrome, progressive, fatal over and over again.

Then, Wednesday we did Will's second sleep study. I mentioned in a previous post about him hiccupping in the night. This kid is such a trooper. There were more than 20 electrodes put on his body and head, wires out the wazzoo and a "sock hat" to keep it all in place. This was a day I was thankful he didn't nap at school. He was so tired he had an easier time falling asleep.

Going off his cowboy obsession, he was pleased with getting to wear TWO belts and a bandana like a real cowboy. (We called the sock hat a bandana)

Ready to go to sleep. You can't see all the electrodes on his head - about 9 of them. He was not a fan of the cannula in his nose. He kept asking me to adjust it. They also put a microphone under his chin. He managed to enjoy a joke by asking our coordinator, Mr. Allen, for some chocolate milk after he left the room. Will got a good laugh out of that one.

The sleep study coordinator was great at making Will comfortable and he said everything was attached in record time because Will was so still. It was hard seeing him hooked up to all the wires and him freaking out at various times in the process. He said we got a good sample. We'll meet with the pulmonologist at the end of the month for the results.

BTW: super awkward in the morning when the coordinator says to me, "it seems like you had a hard time getting comfortable." Yes, you're on video the whole time. I wanted to say, yes, you try and get comfortable 18 weeks pregnant in a nasty hospital bed where the sheets are as scratchy as a mans beard and keep coming untucked because they are too short for the length of the bed, plus a child with wires attached to him who is freaking out occasionally throughout the night and who keeps kicking you. But I didn't. I just smiled.

I forgot Will's much needed cooling vest at school this past weekend which really limited our "out of the house" activities. One of our friends hosted their son's first birthday party at their house with a bounce house etc. It was great catching up with some people we hadn't seen in a while, but we quickly realized Will wasn't going to last. He did manage to talk Neil into getting into the bounce house with him.

They both exited sweaty, but with smiles.
Now that that's all out, I feel much better. If you made it this far in this post, thanks for reading. I kind of want to slap myself and say, oh whaaa Lori, get over it. But sometimes I guess I have to get out of De'Nial to keep myself in check. I'm sure I'll be happily floating back down that river with a mock-tail in hand soon.

Thursday, August 1, 2013

Life Update

Haven't posted in a while because for the most part everything is okay. Here's a quick update and some photos for fun.

Will: we have seen a significant increase in his ataxia and walking ability. It's been happening the past two weeks and it's like his legs almost just come out from under him and he falls or he runs into the door jams or walls more frequently. Poor guy got a little bruise under his eye and then on his cheek - same side of the face - within a few hours of each other. However, he's been doing good in physical therapy, which I find odd.

We think we might have figured out what's going on - he has been hiccupping in his sleep. Usually between 1 and 3 a.m. Sometimes it wakes him up and other nights he is just very restless. Lots of moving. You can see a noticeable decrease in energy the following day after the hiccups. When he doesn't hiccup during the night he seems better the next day.

So, we're going to do another sleep study, scheduled for next Wednesday. I don't anticipate any poor results, but this will give us some reassurances and data on his sleep which is a big contributor for his energy levels the following day.

Research has shown that putting a mito patient on oxygen while they sleep actually helps them get better, more restful sleep and helps to conserve and secure more energy for the following day. I'm really hoping we don't have to add that to the list, but if we do, it would be an easy fix if it helps his stamina.

At the Circus

Hard to believe Will has been doing speech therapy for 6 months now! I am still amazed at his progress. We did a three day test during speech to assess his abilities.
  • Fluency, which tests stuttering, is not going to be good. He still is stuttering quite a bit and thankfully, Dr. Koenig doesn't attribute it to disease progress, but rather "normal" four year old stuff. We're continuing to work on this through therapy and we've seen a change for the better. Just a work in progress.
  • Language, this tests his critical thinking or what I call, cognitive ability. This little four year old scored on a 6 year old level for his language skills. Oftentimes I have heard many parents say they think their mito child is "trapped in their body" - I am so very thankful that Will is able to express himself.
  • Articulation, this tests how well he pronounces his words. So for example kids by age two should have conquered the "f" sound. Now, he has and uses it in spontaneous talk. We're continuing to work on quite a few letters and slowly but surely he is mastering them.
So overall, speech therapy is working. Ms. Cassie (who we all love) has done an amazing job working with Will and is so patient. There are some sessions that I have to zone out for a minute because it's so frustrating. I can only imagine how Will must feel.

His therapy and school schedule is demanding and he handles it like a champ.

Riding the bronco in full cowboy gear. At our apt with Dr. Koenig one of the other patients parents was wearing "cowboy gear" and one of the nurses talked him into visiting Will. Will was in absolute awe. Come to find out this family had just been diagnosed with Leigh's as well. Then I was in awe - that this dad was able to do that for another child on such a hard day was amazing.

We had a mito/neurologist apt a few weeks ago and Dr. Koenig thought he was looking really good and to keep doing what we're doing. He is 48 pounds and 44 inches. He's now wearing size 6/7 shorts and 5/6/7 shirts (depending on the store). He keeps trying to wear some of his favorite cowboy shirts that simply do not fit anymore.

He's been growing so much we're in the process of finding a new pediatric rehab doctor for his AFO / leg braces. His old doctor retired and this "new boot" process can take well up to 6 weeks. I don't want his toes sticking out over the edge and making him uncomfortable. And so begins the next round of boots. I'll be curious to see if he picks a new design instead of the usual sports theme.

How I found Will asleep one night - note the pillows are in the top right corner.

Baby Martin #2: Everything is still looking and going well. 17 weeks and counting. I am out of the tired phase and am happy to have some energy and "zest" back. So far the biggest problem has been headaches. I'm not a fan and just try to power through them. We'll be finding out the gender in late August so looking forward to that day.

Life in general... is good. It's so much easier to take these little hiccups in the road - speech, a sleep study and new boots - when you know who to call and what to do.

Being silly before bedtime.