I have been absent in the blog world. The truth is this and this is the honest truth. I am lucky if I can get a shower these days, let alone blog. In the last two weeks there has been a birth in the family(not me), a g tube infection, a birthday for Blyss, a handful or more of medical appointments for Wysdom and lots of family stuff that I can't quite get into that has taken up a heap of time. So you must forgive me for not keeping you up to date or checking in on your blogs. Everyday I have the intention to blog...but sleep seems to be the priority.
Wysdom is now on his 6th g tube infection. We are dealing with it as this has been our norm for a bit. We were kind of thrown off guard because he was doing so well. We were taken back and a little surprised. Since being on the blended diet, Wysdom has been doing really well. He has become so active and wants to slide or attempt a crawling motion. Normally we try to avoid this type of activity(due to his g tube). However he just kept rolling over. In a way it is great...I mean who wouldn't want to have their little one learn to crawl and do lots of physical therapy type of moves. But the g tube is not loving it and proved it with a nasty mess of an infection.
On a good note Wysdom is doing really well orally. He is eating now more than he ever has. Two weeks ago for whatever reason I started to count how many spoons of food he ate. We used to do this in the start of oral motor therapy, but then I found it set us up for a disappointment so we stopped. However last week when we just randomly tried to see how much he would eat....HE SHOCKED US!!! He ate 50 spoons of the blended food= about 100mls. For the last week or so we have tried to feed him at each feed and he is doing amazingly well. He has eaten 150mls at one sitting. So we have been able to not use the tube for a feed or two in a row. It is great to see him doing so well. It is still quite random and we haven't formulated a strategic plan....but everyone must know that we would love to move away from the g tube eventually.
Crawling and standing need a lot of work still. Due to the g tube we have made the tummy time off limits basically for the last 6 months. So he really doesn't have the same opportunity to use his muscles. We are trying a stander and doing the rock on hands and knees but we need a LOT....of work here.
Mmmm...let me see what else? We have been blessed not to have any reflux for the last little bit and therefore we have been able to do more fun things like swings and more outdoor activities.
At our last eye appointment we were told to switch our patching of just the left eye to both eyes. This is a good thing. Wysdom is using both of his eyes now and alternating from one to the other. So we have another appointment in a couple of months to see if he will be a candidate for surgery. Right now we patch for 45 minutes once a day and alternate eyes.(or at least this is what we should be doing-Wysdom hates the patch)
Hearing is still in question. We have had a hearing test recently and he failed the test. He did respond to some of the behavioural test but the response in his ears when tested showed that the tubes were not working. So we went to the ENT and the new plan is to try to clean his ears out and take some wax out and then in the next day go for a hearing test. This will give us the most accurate test results as the wax should not be a factor. In my heart I totally believe that he can hear. I am not saying 100 percent, but he can hear. He responds to sounds, songs and actions.
I think that is about it for now. I really truly have been missing you all and blogging, but it just has been really hard to get the time. I should be blogging a bit more as we have a week of no appointments coming up and plan to do some fun outings. We also got the Travelling Afghan this week so this should be a lot of fun taking it with us everywhere.
Oh yes I plan on sharing that I have been on a RAW challenge for the last month that I want to share about too. Anyways that is it for now..hope to catch up on all your blogs soon.
4 comments:
So good to hear from you!! Although when life gets crazy-busy like that, I always choose sleeping over blogging too. :)
What great news that Wysdom is eating so much from a spoon--that's a lot of progress! Can't wait to hear all the updates and to see what you do with the Afghan!
I cant believe he gets g-tube infections like that. They are usually rare because the g-tube is not a sterile tube. And i've never seen a g-tube keep a kid off their stomach. Hopefully he'll keep eating good so you can pull that dang tube out!
Poor little guy! Addy's g-tube has only had a few little infections, nothing major. We didn't have to have her avoid tummy time. Poor little guy! I'm impressed with the eating, Addy still has ZERO interest! Way to go Wysdom!
Bless your heart. No need to apologize. Sleep is much more important than blogging anytime. Hope his infection goes away soon and life slows down a little for you.
Post a Comment