Thursday, July 29, 2010

Passed Our Hearing Test

Finally we passed our first hearing test!!! This is a big thing. We have failed numerous tests. Actually way to many to count. We have had tubes in since October last year and still we were failing. We go for the hearing test....back to the ENT....then so on and so on and so on. It has been kind of crazy actually.

This week we finally had a plan developed. Get his ears cleaned and then do a test ASAP so the wax doesn't have a chance to build up. It seemed to work. So Tuesday we drove an hour each way to get Wysdom's ear's cleaned. Fun...NOT. Then today we had the hearing test. Okay all was not perfect with the test. They stick this little thing in his ear and measure the output. The output is still not where it should be. It is suggesting fluid or that the tubes are still somewhat clogged. They really can't say as Wysdom will not allow them to look to closely. MIGHTY BUT STRONG COMES TO MIND!!!.

So part of the test is questionable. However when we moved to the behaviour test he did quiet well and PASSED. He responded well. If you have never done this, it is when they put you in a booth with your child and have speakers making different levels of sound. When Wysdom respond appropriately by turning his head towards the noise...a toy claps or plays the drum. Wysdom turned his head and waved at the toy. So I am happy for the time being. It seems the hearing loss fluctuates due to fluid and not likely a permanent loss.

The audiologist was honest and said we will probably be back for more test with her in the future when language is supposed to develop and she said that we would be followed more closely then. As well we are to keep our already booked appointment for another test in October. So yes I can be happy, but this is an ongoing issue. Honestly I am already aware of that, but I still can be happy with a pass today. Yeah one for WYSDOM!! I am sure many of you have stories to share about your ENT/Tubes or lack of tubes that you could share too.

Monday, July 26, 2010

T21 Travelling Afghan Pics

Guess what we got?

Last week was our scheduled week of no appointments. We had no idea what we were going to do for this week. Usually we are busy with appointment, however one of our therapist said that we should just book a week of "NO APPOINTMENTS". So we did. Then on Friday just before the week started we were blessed with a very special package in the mail. One that we had signed up for a while ago. It was amazing. We were spending a week to ourselves and we got the famous "T21 Travelling Afghan" for a week. Let's just say this was a very good week.

For those of you that have never heard of the Travelling Afghan I urge you to go check it out. It is an amazing project that connects so many families with children with Down Syndrome. We were truly honored to have the afghan in our home knowing that it has been a part of so many other children's lives and families lives. You can feel the energy, the positiveness from it as soon as it arrives at your doorstep. In the journal that accompanies it you can read about all of the other families that have shared in the journey and see cute little photo's of the children along the way. What was especially cool was seeing photo's of other mom's that I know from the DS Blogging Community. Since I live in Canada and may never get over to where they live in the US, it made me feel a lot closer to everyone.

Wysdom and his big sister loved it. We had to keep it under high supervision due to Wysdoms two front teeth. They are very very sharp.( I will have to take a close up shot). They can slice a blanket in seconds and this is one of his favourite things to do. So he could never have it unsupervised or in his grasp for too long. Other than that it went everywhere with us:

A beer and rib festival
Water Park
Animal Park
Marine Land, Niagara Falls
Jazz Festival
and some late night walks and car rides.

So after our week off it goes. We were sad to see it go, but so so HAPPY to be a part of the journey. Here are some of our pics with the afghan. A big thanks to CJ for this amazing project...It made our week very special!!

First night at the beer and rib fest

Trying to take a pic at the carnival and jump out of the way of people

Keeping my babies warm on the way home from Niagara Falls.

Sunday, July 25, 2010

Conversation about Baby Signing Time

Okay this is so cute. Julian and I overheard Wysdom and Blyss having a conversation together. It happens to be about Baby Signing Time. Blyss and Wysdom have a great time together everyday, however this was extra special. Blyss was putting in her DVD of Franklin I believe and Wysdom wanted to watch Baby Signing Time. We know this because he calls it " Gunk Gunk Gunk". So picture this. Blyss is putting in the DVD and Wysdom starts saying "Gunk Gunk Gunk". Blyss then responds " No I don't want Gunk, Gunk, Gunk". Wysdom repeats his efforts to get the DVD on by saying " Gunk, Gunk, Gunk". Blyss then responds "No Wysdom, I don't want Gunk, Gunk Gunk. I have done all the learning from Gunk Gunk Gunk" She means that she has learned all of the signs already. And so the conversation goes on and on for a few minutes while they try to figure out what to watch. Julian and I just stand by and listen to the beauty of this moment. So so darn cute. Love it!!!

Sunday, July 18, 2010

Please Forgive Me...

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.