Ok, so I know it's been a while since my last entry, and I'm very sorry. When I got home from my girls weekend (which was a blast!) I caught a darn stomach bug and slept for like two days. I guess this past year caught up with me finally. That same day, we also lost a great friend, Robert Credidio. We love you, and you will be missed Robert!
So last week I decided to move both the boys beds in Joshua's room so they can sleep together. After all, Joshua has been going in Lucas' room and sleeping on the floor to be closer to his brother, so I thought this way, everyone's more comfortable. And they love being together! The only problem is that we changed Joshua's crib into a daybed, so he can freely get out whenever he wants (not that the rails were stopping him before). I should've known that would be a problem because as soon as Josh gave him the "go ahead" to get in the bed once the rail was down, he immediately started jumping and said, "Oh, this is fun!". So now it's a fight of wills to see who will last longer during the nap time ritual of him getting out of bed, and me putting him back in.
Lucas' old room is now being turned into their playroom/guest room. And would you believe that when putting our extra medical supplies we don't use everyday up in the closet, I found more trach supplies that I forgot to give to Tripp. And yesterday Josh pulled a bag of suction catheters out of the glove compartment of his truck! (And he barely did any of the suctioning, let alone in his truck!) I'll probably be finding supplies for years!
So, the little Lukie man is doing pretty good. The extra medicine must be finally kicking in because we are no longer having (up to) 6 seizures a day. He may have 1 or 2, but to me, that's better than before. The extra medicine has its' good points and bad points. Obviously it's controlling the seizures, which is good, but it also has some not so good side effects. The little guy has been very cranky lately. If he's not happy, he's gonna let you know! He has had more temper tantrums in the last couple of weeks than he's had this last year! And worst of all, he hasn't been using the left arm near as much as the right arm AGAIN! After the port was removed, some of the swelling in that arm went down and he started using it more. But now, he's reverting back to the old ways again. And the swelling in that (left) arm has also increased again.. ugh! And lastly, he's been a bit groggy. I'm trying to give him his medicine earlier at night so it'll wear off a bit earlier during the day, but we're so used to our routine of giving him the meds at bed time, that I haven't been near as consistent as I should be.
One thing I am so happy to report is that Lucas is doing so much better with eating. (I never thought I'd be saying that so quickly!) Don't get me wrong, he's not eating spoonfuls of food at every meal, but he isn't turning up his head to the spoon anymore, and he will ALWAYS take food off of his pacifier--even when he sees me put the food on it. He's also learned the sign for "eat" and actually told me "eat more" (in sign language) the other day. Talk about huge steps!! He even ate 5 puffs yesterday! (Well they melt in your mouth, but he left them on his tongue until they dissolved!)
I have to say that the eating is the hardest thing to be consistent with. Part of it is Lucas not wanting much of anything to do with eating, and part of it is pure frustration and lack of consistency on my end. He's so hungry at breakfast that he doesn't really want the spoon, but he'll take anything of the pacifier. At lunch, about half way through the meal, he's falling asleep so I can't feed him anything by mouth at this point because of the risk of choking and aspirating. But dinner is his best. I've been trying to get him to watch Joshua eating to get him excited to do what his brother does. Hopefully that will work a little better--he just loves his big brother so much and loves everything he does.
So physical therapy is finally getting better. My man looked like his old self last week at therapy. For the first time he didn't complain just to sit up, which he's been doing lately. I was getting worried something was wrong, but that just goes to show you how moody he's been. Hopefully he'll do just as good this week. We've been working on different things so maybe he'll show off some of our tricks tomorrow when the therapists come to see him in the morning!
BTW, I think I told you all that we are getting this sit to stand seating and walking system. Well we sent all of our paperwork in to the company to order it the first week in June. They were supposed to send the approval for insurance (which usually takes 30 days) and then they would order the equipment (it takes anywhere from 2-6 weeks for the big items to come in). Well, we found out last Wednesday that the company forgot to send in for the authorization to the insurance company! This week we should get the approval (when we should be getting the stander!) and hopefully we can get the company to rush the chair. My guy needs to start putting more weight on those legs and get stronger so he can walk by his 2nd birthday! Even if he's using a walker, my little guy will be walking! I originally said I'd be happy if he walked by 3 (which would be fine) but I think he's strong enough to do more now...I think he's gonna surprise me!
And how could I forget to tell you?? Thank you for all your prayers...the new doctor FINALLY called me back with an appointment. (After almost 3 weeks of trying to get an appointment--good thing this wasn't serious or anything!) Anyways, we're going next Tuesday and hopefully he'll set up the sleep study at that time as well. I'm also thinking about asking him to change his seizure meds or do a combo of two meds at lower doses to fight off some of the side effects of the drug he's on now. I'm hoping this will get that weaker side (left) more active again. I just hope the weakness is from the meds and not damage from all the seizures he was having. Well, hopefully this new doc will have some answers for us. But until then, we're just taking it day by day.
Man, I should've been a doctor! :)
Love y'all!
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