Starting out on a positive note, we have been seeing some great progress in the past week in all the "therapies"... Physical, occupational and even speech/eating!
Physically, Evan is just on the verge of crawling, and has become a human rolling pin. He also is learning to reach much better while sitting, propping himself and extending out to get a favorite toy.
In occupational therapy.... Wow, what a difference new toys make! He has been making so many leaps and bounds in his playtime activities and grasping... He's even beginning to learn to put his blocks through the right shaped holes!
The most exciting thing for me is the eating, of course, because we have struggled so much with it. Yesterday, we once again were able to feed him almost 1/2 a jar of baby food. We haven't had this much success since we took the trach out over a month ago. I nearly did my goofy happy dance, I was that happy.
We had his 12 month pediatrician check up and shots on Friday, and he did wonderfully. His weight and height are still on the lower end of the growth charts, but we've been seeing a steady increase, so I'm not particularly worried about it. Hey, he's ON the growth chart! I'm happy with that.
Most helpful of all, we finally got a referral for formal speech therapy to begin. I have been doing what I can when I can, but I will be so happy to have an expert to help guide us, because it's been very slow going.
I hope that he will be eating all his meals orally by age 2. I can't say whether that is a realistic goal or not, but it's a starting point, and I need a specific goal to work for. With real therapy on the horizon, I have set this goal with no real reference to how well he will progress... but as I said, it's a good goal to work for and I think it isn't too un-realistic.
Today, we have an appointment to see the pediatric eye specialist, for the multiple issues Evan has had with his eyes. He has the droopy eyelid, which we've noticed getting a little more droopy recently, and the nystagmus (involuntary eye movement), which has improved. Then there is the most important question: Does he have cortical visual impairment? I've been making mental notes as it relates to his behavior and eyesight. I'm still unsure whether his problems stem from this possible impairment, or some other issue that has not been diagnosed yet/ All I do know is that he IS different from other toddlers his age, and even infants younger than him. I've been wracking my brain, and googling everything I could in an effort to be as proactive as possible, and to execute experiments to see how he reacts in certain situations regarding his vision. According to the eye exams given to him in the hospital, his eyes are pretty normal, other than the drooping eyelid and nystagmus. But there are other issues that can cause some of the same "symptoms" and behaviors that I've been noting with Evan, and it's very important to me that we diagnose whatever it is correctly, so we can provide the proper sort of support necessary. I've been doing okay just "winging it", but it will ease my worries to have a specific reason for the odder aspects of his behavior when it comes to visual things.
Tomorrow is also a big day. We'll be going in for Evan's hernia repair. This will be the 7th time under anesthesia, and his 5th actual surgery. We will be at the hospital at the very least for a full day, if not over night for his recovery... It pretty much depends on how well he's doing afterward.
Finally, let's talk about the "sleepless" portion of the title. My sweet little guy has been waking up crying almost every night, and then staying awake for anywhere from 1 to 3 hours. Last night, for example, he woke up at 2:30 and did not go back to sleep until just after 5 AM. I managed to catch a nap or two during this time on the mattress we have in his room. But after he yelled again at 4:50 this morning..... well, I was awake. Last week, we saw a total of 5 nights where he woke up at 1:30 almost exactly every night, crying and nearly inconsolable. I'm guessing that it has to do with his teething.. he's cutting one of his lower incisors, another incisor is peeking up just below the surface, and I could've sworn that I saw a molar making it's way up too. So we've been treating his teething pain as much as possible. I also think it has something to do with separation anxiety as well. He's been VERY clingy when I pick him up those nights he wakes up, and refuses to go back to bed. He's fine as long as he's being held, but at the smallest hint I might be putting him back in his crib, he SCREAMS. Not even laying down with him on the mattress in his room works. By the time he's asleep, I am wide awake, so I've been quite the early bird lately.
That is why I've been running a couple of hour's sleep each night for the past week and a half. BUT! I have to say as exhausting as it can be, I'm so thankful he's doing something that falls into the category of "normal" for his age.
I will be updating tomorrow with how his hernia repair goes, complete with pictures and details.
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