I Cannot Come Down
23 hours ago
Nathan did so well as the tech was hooking him all up. He didn't seem to mind all the leads from his chest, face and head...until the nasal cannula was placed, and the little dude freaked! Thankfully, he was so tired by this point that it only took a few minutes to settle him down to sleep.
I slept beside him all night long and tried my best to untangle him from his wired-ponytail each time he flipped around. I am anxious to hear about how many apneas he had during the study, as I could audibly hear (how's that for a double entendre?) him holding his breath, then gasping and waking up from the gasp. And he did snore from time to time. We should receive the full report in a couple of weeks.
Nathan is still having a hard time bouncing back from the busy weekend. He is floppy and fussy and very unsteady when he walks. His stomach also seems to be having a hard time keeping up and is causing him to have some pretty rough GI problems. For the most part, he is just really "off" and we can not figure out what is going on with him. Our pediatrician ordered labs this morning to make sure he didn't need to be admitted for some fluids, and his blood work came back okay. So we are doing our part to help hydrate him enough to flush his system and just keeping a close eye on him. He is still sleeping a lot but is definitely sleeping less than yesterday's 20 hours! Obviously, his body is just overly exhausted and he is having a hard time getting back to his baseline.
My best friend here in town called the exact moment I was loading all the kids up to head to the hospital to get Nathan's labs done and insisted that I bring the girls over to her house so I wouldn't have to lug them around for everything. I found out that she reads this blog now (Hi Rachel!) which I find hilarious because she is usually the first I tell all these crazy kid-raising stories to before I even have the chance to blog about them.
And then walked down the sckreet to the big puddle in the middle of the road. And yes, it is some nasty water in that puddle, which is why I only let the kiddos take one sip from it when they get thirsty.
Emma found a worm, whom she loved and petted and pulled and twirled until it wouldn't wiggle anymore and pooped out something that strongly resembled what worm guts should probably look like. She just so happens to be every creepy crawly's worst nightmare.
We had a good weekend in Macclenny for our church meeting, but we are pretty confident that Nathan was so overly exhausted yesterday that he became acidotic in return. His neuro said at the last visit that he believed that Nathan was acidotic more than we thought but his body had learned to compensate with the high lactic acid levels, etc (which is relatively common in mito kids). Obviously, his body was so exahusted yesterday that he couldn't compensate anymore and he started vomitting.
We are on Day 5 of nearly incessant rain...which is all good and schtuff because we needed it and schtuff, and I am really trying to look on the bright side of having an 80% chance of rain for all day tomorrow as well. Thankfully, it warmed up quite nicely today and we even had a good break in between downpours, so the kids and I decided to make it a puddle day...
I cut Nate's curls off last Saturday...and I cut about three inches off Emma's hair yesterday. Clearly, I have been a little scissor happy lately.

The flowers are LOVING this rain though...and I'm sure the mosquito larvae are as well.



Okay, I have a TON more pics from today's "cooped up in the house for too long" adventure...I'll post more tomorrow.
I must brag on my dear hubby a little bit today. We received word yesterday that Jay received his tenure promotion. He went up for tenure a year earlier than usual, and since he had a pretty loaded packet, he passed through the University's screening system with ease. We are indeed very thankful for the job that Jay has...not only does he do a great job, but he loves it. He works hard at his job, but he also makes a special point to spend as much time with his family as he can, and as his wife, I am especially thankful for this desire in him. He's a wonderful man...and I love him dearly and am so thankful for him.
And that's how Emma rolls...if no one sees what she is doing, it isn't wrong...right?
Anyway, he said that Nathan looked better today than he has ever seen him...and he was right! Nathan is having an awesome week. The month of April was a rough one for him on so many levels, and looking back, I think that his breathing problems were the root of everything. Once we got a control on his asthma, he started sleeping through the night consistently for the first time ever. With that, his energy levels are so much better than they have been in a long time, and his strength is coming back, and because he isn't having to work so hard to breathe all the time, he has gained almost a pound in the past couple of weeks. It's seriously like having a new kiddo around here. And its a wonderful sight to see...even if we have to lock all the doors in the house from now on...
Jay found this little sucker in our front yard this morning, dad-gummit...the first snake of the season in our yard. This prompted what I call in my anti-snake brain as "snake season", where I will start to watch each and every step I make in our yard from now until our first freeze next January in hopes that I will never ever ever ever ever ever step on the many hundreds of thousands of snakes that call our yard their home. I have a reputation with these snakes...one almost fell on my head when Abby was a baby...I kid not about these things. It was in the eaves of our garage door and I happened to walk under the door as it was going up...that's when the snake dropped 2 feet in front of me. And then I almost stepped on one as I was walking to our friends' front door. And then one slithered between me and the kids last year as we were playing on the slip-n-slide. They are evil, these slithering creatures...pure evil.
The girls LOVE it when Jay catches a snake. Emma wants to keep them as pets until I remind her that the day she brings a snake inside is the day that bear-bear finds a new permanent home far, far away from our snake country. Insensitive, I think not. Here is Nate trying to imitate a snake...
...which makes me so happy that I can not contain it. Not that he is imitating a snake, but that he is finally sticking out his tongue!!! Funny how little things like this can make you so excited! I have been working with him for months on him sticking out his tongue, and he figured out how to do it a few days ago. This is the kid who repetitvely stuck out his tongue every 3 seconds as a newborn/infant that had a few doctors asking a LOT of questions. Obviously, newborns are not supposed to do that, and we still have no idea why he was doing it.
Once he stopped, he never did it again. And that has been one of our exercises and games for the past few months...to try to get him to stick out his tongue. You can imagine my excitement when he finally did it a few days ago. Little did I know that once he figured out how to stick his tongue out, he would then find it interesting to LICK every darn thing in sight. Trees and plants and refrigerators and feet and his own arm and lotion and chairs and doors and his sisters...nothing is exempt to licking these days. I don't have a heart quite yet to tell him to stop licking everything and everybody because he laughs in excitement every time he licks something new...like he is experiencing something for the very first time. Yes, I know...the kid is spoiled! I know. But in a way, I can't help it. I am just so glad that he is experiencing life to the fullest right now. I love seeing him laughing and smiling. I love this kid.
So I planted flowers...in the hottest part of the day on Saturday. And I got thoroughly burnt and dehydrated. But I did get finished in time to watch the Derby. Woo-hoo for 50-1 odds. Oooh, I just love the Derby. Every year, it makes me miss Kentucky, which is oh, so pretty this time of year. But I digress...
And that exact moment was when I realized why women like to garden. Those flowers...they are our babies (although taking care of babies seems to be a lot easier indoors...away from the swarms of mosquitoes, at least). We feed and water and talk to our precious plants. When the kids all grow up and go on yonder, flowers (and pets) (and husbands who don't pick up their dirty socks) are the only things left we have to mother.
Fast-forward a few days to today, and she is still calling that dang puppy "Booty". I'd had had it and confronted her about it...
And even though we are very thankful that he took the last of the oral steroids tonight, we are even more thankful that he did actually take them. I haven't seen him breathe this easily in, gosh, I dunno when. His wheezing was amazingly absent after the second day of the meds, and his retractions and respiratory rate have improved dramatically over the past couple of days. He will probably always retract when he breathes, but they at least look a LOT less intense now. Poor little fella was really struggling more than we thought. Now he will be on a daily inhaled steroid to hopefully keep the inflammation at bay.
When I have kids, I will never...well, dress my boy in fru-fru outfits, of course! I want my little boy to look like a little man. And he does...a lot of the time, but I have to really learn to stop saying the "I will never" thingamabob. It's purely a set-up for looking like an idiot.
On a separate note, we received word that Hailey's (my niece) open-heart surgery is set to be performed on May 27th. Please keep the sweet darling in your prayers.
On Friday, I received a text (gotta love today's technology) from Nathan's physical therapist. She had been contacted by our Early Steps supervisor asking if she would consider becoming a provider with them to be able to conduct therapy services through our state's program. After the middle of May, she will once again be Nathan's "official" therapist and will be paid through the state for her services with our son. I will no longer be burdened by her providing services for our son for free...as she will once again be paid for her services. She will be the one over-seeing Nathan's case (therapy-wise) once again...as it has been the past year.
After a tough week, I just cried when I received this text from her. God is in control! And He provides in so many circumstances. So many times when we have felt that we were at a road block, He has provided a way so much better and easier than we could have ever imagined. God provides! And we are living proof of that fact.
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