Thursday, April 7, 2011

Escape artist out of the crib!

Well it finally happened. Brady can get out of his crib with a loud THUD and then I hear the door knob turning. (sigh...) This would normally be a good time to switch him from the crib down to the toddler bed, but he just doesn't seem to be ready for it. He doesn't understand "stay in bed". I was hoping his receptive and expressive language would get a bit better over the next couple months, and we'd have him in a "big boy bed" before his 3rd birthday, but I'm not sure what to do. He can't say "mama" or any two word phrases yet, so actual conversations aren't happening anytime soon. When we get him out of bed in the morning, he RUNS to Jax's room and throws open his door. The thought of Brady being FREE at night and early morning to run around our rooms is not a good thing yet. What to do...

The boys had a good session with speech therapy today. Jax has his own rendition of saying "high five" and a few other things not understood by the general public, but we know :)
Jax hasn't been doing well in the mornings lately. He had 3 episodes by 10:30am today. I hope it doesn't mean he's coming down with ANOTHER bug, and maybe just his GI cycle acting up. He's still doing decent with his lunch and dinner, so that's a positive.
I had a long conversation with the chiropractor and speech therapist this week about Jax's condition. I wanted to get their opinions since they've known him almost his whole life and have been people in his life trying to improve the quality of his life. I know the subject of mitochondrial disease is going to be coming up at Jax's appt on Monday with the GI/Feeding Team, and I've been trying to get my thoughts straight about it ahead of time. With Jax's latest lung issues, I know it's inevitable to come back up.

To catch any of you up, Jax was considered to have this disease when he was diagnosed with pseudo obstruction. It's very common for babies/children with motility issues to have mito issues since the cells in the body don't have enough energy to produce food/oxygen and the nerve function in the gut get affected first. Thus the body doesn't work properly. Jax had blood testing done at 9 months old and the results were 'inconclusive', so the term "suspected mild mitochondrial disorder" has always remained on his file. We decided to treat Jaxon as if he had an immature system due to his low blood flow in utero as the result for his issues and prematurity, unless his system failed to improve or new symptoms presented.
Well... it may be time to look back into this. The reason we didn't move forward with more testing was because the next way to test is a bit invasive (muscle biopsy) so we wanted more reasons to test. Jax was actually treated for cellular energy issues from the alternative doc since he tested to have a dysfunction through all that independent testing we had done (so that of course is always in the back of my head).
Having this diagnosis would only give his issues a name, and of course have us change his treatment a bit. There's no cure, and it's thought to be mostly a childhood disorder since the progression of the disease doesn't allow many children to become adults, but there's always ways to support it, not to mention there's hundreds of different kinds and severities. We also need to know since this is genetic. Now there's all sorts of reasons as to why Jax would have this and not Brady, or it's possible Brady does too and it will show up later or only get turned on from viral infections etc etc. There are so many IFs, that it can drive a person crazy. Which has slightly been happening to me since Jax had pneumonia. I've been a bit of a wreck and find myself in tearful conversations with Jax's "people".

I'm hoping for the best, of course, but the looming thought takes me some days. I don't do well with unknown, especially when it's my child. I just need some control, and if that's a name or a diagnosis, I can at least fight the fight.

So not to end this on a downer (sorry, thanks for the therapy), since of course it IS possible that Jax will be walking, talking, eating and breathing just like all the other kids walking into kindergarten, so I keep my chin up. And I know you all do too, so that helps. Thank you.

Never to leave us without a smile, here's Brady who decided to blow on his tongue to make crazy noises all day today.

I also keep finding Brady stealing every piece of paper he can to color on it. Here he is with the 10th envelope or so this week. Mind you, he's about 10 ft away from coloring books and note pads. Is it irony that he's lounging on the "naughty couch"? Hmmm, we may have to re-think that one.

If anyone would like to read about mitochondrial disease, this a great site with all the info you could ever want. http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm

5 comments:

themaggers said...

Have you looked into one of these? It worked great for the little escape artist of the family I use to nanny for!

http://www.walmart.com/ip/Tots-In-Mind-Crib-Tent/6372421?sourceid=1500000000000003260330&ci_src=14110944&ci_sku=6372421.

erinlaughs said...

I was going to recommend crib tents as well. Although I think it depends greatly on the type of crib you have.

When my girls started climbing out/into each other's cribs, we talked a lot about bedtime rules. No jumping, and stay in your crib.

Suzanne W. said...

Nikolas has Mito (complexes I, III, & V). I don't know that have the diagnosis made much difference for us except that there are so many things we avoid now during hospital visits. That info has made for much better and shorter stays. It's a scary process but knowledge is a very powerful thing and it may be worth it to go ahead & find out. (hugs) either way. Those little boys are super cute and such a blessing to those of us who read about them. :)

Regan said...

My son has an FOD, which is a mito disorder. He was diagnosed with the newborn screen, but as long as we stick to his protocol and he remains healthy he is great...any sort of gastric issue and we are in the hospital. Without his diagnosis he would have died at 10 months from a simple stomach flu, we have met amazing people through the mito family, and it may be worth it like Suzanne said to find out. I saw flipping through your blogbriefly that you seem to know Sara Eaton and Miley, they are Mito friends of ours as well and a great resource. Just wanted to say hi and introduce ourselves, your boys are adorable.

Kim M. said...

Crib tents are the way to go. My Brady and his twin climbed out a few times and we (specifically I) wasn't ready for them to be in toddler beds. We got the tents when they were almost 2 and they are still in them now at over 2 1/2. :) It's a great feeling to know EXACTLY where they are when I'm showering and sleeping.

Kim
from the multiples board on the bump