Max and I have been busy, busy, busy. Busy coughing, sneezing and wheezing that is. :)However, I was relieved that it hadn't impacted Max's lungs too much...until today. Now he is requiring the full treatment...CPT, oxygen, inhalers, the works. But you know what? This guy is one tough cookie, in great spirits, and will rebound soon enough. :)
Tonight instead of full on CPT, I gave him a good ol' tickle session. He giggled and giggled like crazy...absolutely adorable! CPT is basically clapping his back hard enough to move around the gunk in his lungs so that he can cough more effectively. Sometimes roughhousing and tickling can accomplish a little of the same...and it sure is a lot more fun!
Fortunately our "bugs" haven't stopped our schedule too much. We have added in three new therapies to our life!
Our sign language instructor starts officially with us on Thursday, and I am really looking forward to it. As much as I really, really, really want Max to communicate verbally, the progress has been very slow. It is becoming quite clear that it isn't going to happen right now and we need another way to communicate. He seems to be grasping the concept of sign language (which is wonderful), so I want to strengthen that as much as possible. Meanwhile, we will continue with our two speech therapists and keep pushing on with the verbal communication because that is my ultimate goal.
And last week we added our third OT professional to the team. Not only is she very talented and energetic, she also includes HIPPOTHERAPY as a big component in her therapy. Yep, HIPPOTHERAPY! We have been on the waiting list for a very long time...and then out of the blue, God intervened (seriously...met the OT at church and the next day magically there was an opening on the list!). We started right away! Max got to meet the horse the first time, but he wasn't too impressed. That's ok...I'm sure it will take some time. This week is Max's first time on the horse (with a lot of assistance of course). I have a feeling there may be a few tears, but we'll see! I am so excited about this alternative therapy to help Maxwell with his balance and core strength.
Let's see...oh yes, we are also going to be working with a behavior specialist. I am working with a few of our team members to make this happen. I know, I know...why am I adding this in already? Well, with Max's limited communication, hearing loss, developmental delay, and CHARGE diagnosis, there is definite reason to be concerned about potential behavior problems. I want to learn more about addressing them sooner than later. At this summer's CHARGE conference, they really emphasized the extreme behavior issues associated with the syndrome. It was pretty shocking actually. So we'll see how this goes. I have been warned though that the specialist is pretty tough and I might not agree with the style. My thoughts? The more input the better and it gives me ideas to consider.
And last but not least, we have a lot of appointments at Children's this month. This week we have urology followup and a dental clinic. Because of Max's heart condition, all of his dental procedures are to be done by this particular specialist. Then we have audiology and pulmonary next week. We are also trying to get cardiology and endocrinology in this month. The holidays are sometimes the best times to schedule because other families are busy and there are more open appointments. Plus the hospital is less crowded, which means less germs. I might have been doing this for only a few years, but I am a quick learner! :)
So that's about it...I will try and post some more photos. He is more and more handsome, beautiful, adorable every single day!
Tonight instead of full on CPT, I gave him a good ol' tickle session. He giggled and giggled like crazy...absolutely adorable! CPT is basically clapping his back hard enough to move around the gunk in his lungs so that he can cough more effectively. Sometimes roughhousing and tickling can accomplish a little of the same...and it sure is a lot more fun!
Fortunately our "bugs" haven't stopped our schedule too much. We have added in three new therapies to our life!
Our sign language instructor starts officially with us on Thursday, and I am really looking forward to it. As much as I really, really, really want Max to communicate verbally, the progress has been very slow. It is becoming quite clear that it isn't going to happen right now and we need another way to communicate. He seems to be grasping the concept of sign language (which is wonderful), so I want to strengthen that as much as possible. Meanwhile, we will continue with our two speech therapists and keep pushing on with the verbal communication because that is my ultimate goal.
And last week we added our third OT professional to the team. Not only is she very talented and energetic, she also includes HIPPOTHERAPY as a big component in her therapy. Yep, HIPPOTHERAPY! We have been on the waiting list for a very long time...and then out of the blue, God intervened (seriously...met the OT at church and the next day magically there was an opening on the list!). We started right away! Max got to meet the horse the first time, but he wasn't too impressed. That's ok...I'm sure it will take some time. This week is Max's first time on the horse (with a lot of assistance of course). I have a feeling there may be a few tears, but we'll see! I am so excited about this alternative therapy to help Maxwell with his balance and core strength.
Let's see...oh yes, we are also going to be working with a behavior specialist. I am working with a few of our team members to make this happen. I know, I know...why am I adding this in already? Well, with Max's limited communication, hearing loss, developmental delay, and CHARGE diagnosis, there is definite reason to be concerned about potential behavior problems. I want to learn more about addressing them sooner than later. At this summer's CHARGE conference, they really emphasized the extreme behavior issues associated with the syndrome. It was pretty shocking actually. So we'll see how this goes. I have been warned though that the specialist is pretty tough and I might not agree with the style. My thoughts? The more input the better and it gives me ideas to consider.
So that's about it...I will try and post some more photos. He is more and more handsome, beautiful, adorable every single day!
5 comments:
and getting more SUPER RITE yeah i no wat u mean by the sign and even if he does talk he can still sign to the charge people who use that thats where ive gone wrong i talk and never kept up sign so around those kinds of people im stuck
Have fun riding the horses, Max--you'll love it once you get used to it! Katie has been riding since she was 2 1/2, and we practically have to pry her hands off the saddle every time! :-)
Hugs,
Leslie & Katie
Maxwell, I am so glad to see that you can still wear the coat I got you last Christmas. Santa Mary needs to go shopping for you soon.
I love you.
LOVE the pic of Max in his carseat. How cute is he??? C-UUUUUUUUUUUUUUUTE! Hippotherapy is awesome. I worked with kids who recvd that and they loved it. (I was a CM) Theres a realllly popular riding place up the road from me. Its call Ride On Center for Kids......ROCK of Round Rock Texas. What a wonderful group of people. Im so happy for Max starting this. The other therapies I am so grateful for too. They keep you and Max busy I know but are so good for him. Keep up the hard hard hard work Amy. We are all here for you and Max even though some of us are miles away.
Shannon in Austin
Give Max a tickle for me!
You are a supermom and he sure is a mighty Max!! You 2 make an awsome team and you are an awsome captian, I am always so impressed at how you are so right on top of things. Eva will be in hippo therapy next summer when its warmer and Bailey is out of school so I can pay for it. Insurance doesnt pay a dime here and our EI person never got on top of it for me.
Have fun Max and I cant wait to see pictures!!
Hugs,
Crystal and Eva
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