Thursday, March 25, 2010

We are still here.

Yes we are still here. Please forgive me I have kind of lost my drive for blogging. Wysdom is doing well. Since the last time I have been here we have seen a new boy arise. He now demands for attention. Anyone who knows Wysdom, know that he is fun loving and full of smiles. However low and behold we have seen a new side of this little man. He has a temper. He has learned to demand what he wants when he wants it. It started by taking a toy away from him when he was apparently not done with it. We are thrilled with his new personality... but boy he is keeping us on our toes.

Medically speaking all is fairly good. We have somehow kept things busy around here but good. Wysdom is still teething so everyday is new and exciting. Believe it or now Wysdom has started his first "baby time group" Yah!!! We have been trying to join this group for the last 3 months. Seriously, that is no joke. We had to keep canceling due to his previous issues.( I don't even want to say the if you are interested in what I am trying to avoid saying....see previous posts). Can I just say that Wysdom behaved himself so well and had a great time. He so deserves some fun and time to hang out with other little ones.

Yes we have been busy. Here a few updates. Today he went to see an ND for the first time. He also got switched into a new car seat that he is loving. He sits in it and looks around and claps away. He got a new formula. He also has two more months to try patching his eye before they consider doing eye surgery( I will have to share that story later). We went to visit his plastic surgeon for his forehead. We all got the stomach flu for a few days. I think that is most of it in a nutshell. We don't get our echo results until the 6ths, so that will be the next big thing.

Friday we have a big day ahead of us. We are meeting with a feeding specialist from the United States that is in Canada for a week and we are hoping for some good support with Wysdom's feeding issues.

Anyways I just wanted to give a quick update and let everyone know that we are okay. I am going to try to get back into the swing of things and be on here more often!!!!

Tuesday, March 9, 2010

Sedated Echo and Crossed Fingers...and Toes

Today Wysdom had a sedated echo. I can't believe how time has flown by. In a couple of months it will be a year since his heart surgery. There was a leaky valve after his OHS so they are just doing a routine follow up.

Today I spent the time with Blyss while Julian stayed with Wysdom. It actually started the other way around but Wysdom was not having it. Well to be honest, mommy wasn't handling it. As soon as we checked in a student put a bracelet on his arm and for whatever reason(probably because he knew he was at the hospital) He started crying and freaking out. So he was in no mood as we entered the sedation area. It was quiet until we entered and Wysdom continued to scream and I could not for the life of me get him to calm down. Luckily for me after about 15 minutes or so, Julian must have figured this would have happened. Soon enough there was the secretary by my side letting me know that my husband had returned back to the front desk and wanted to see if I needed him to switch(as in I hang out with Blyss and he would stay with Wysdom). I gave her a big YUP, PERFECT TIMING!!!

Julian has a way with Wysdom and I knew that he would be able to calm him down better than me. Since I had driven 2 hours to get to the hospital and was a tad nervous I felt this was a good choice. At medical appointments I feel Julian is the better one in calming Wysdom down sometimes. There are times when my anxiety about the appointment makes me a little nervous, which I am sure Wysdom can feel.

So it all worked out in the end. Blyss had a blast at the hospital. She was able to visit 2 play areas, go to a story time session, pet a huge Saint Bernard and do lots of other fun activities. Wysdom calmed down and the echo was done and they were able to not go near the infected g tube area. So all in all a good day. Now we just wait for the results. We are keeping our fingers crossed and hoping and praying for good news.

Thursday, March 4, 2010

What can I say... Some Good and Some UGH!!

Where have we been you ask? Well mommy has been chilling for two weeks glued and I mean glued to the tv watching the Winter Olympics. Of course they were here in Canada, but also they took my mind off things and helped me relax and be somewhere else for a bit. Oh that was such good timing for me to have a distraction.

Time never stops for Wysdom though. Before I get into what has been happening on this end. I must just say that something happened to Wysdom around the time of my mom's funeral. He normally does not like crowds or a lot of new people. He was however so amazingly calm and relaxed with the crowd of new people.(So was Blyss) He sat quietly(well almost..just a few babbles) in the service. I had an escape exit all planned out..but he was good. Afterwards he was good and also at my parents house with constant people he seemed to like it. He never stops amazing us. So many people who know him commented on how well he was doing. Over the next couple of days a few family members heard him say Nana. He has never said that and never has since that day. Amazing.

Now let me get to the updates. Well about 2 days after the funeral things started to get busy again. We had a appointment that I had to keep, unless I wanted to wait 4 months for another date. So we got ready to go to the hospital the night before. We were kind of looking forward to the appointment because it was with a new feeding team that included a GI doc, a dietitian and an OT. Yes we have our own feeding team locally, but this team would look at his feeding or lack there of and give us suggestions and let us know if he needed a swallow study. Low and behold the night before the big appointment...we saw something familiar. Unwanted... But Familiar. Yes a start of another G tube infection. So we called the Pediatric Clinic and made the trek to the hospital for 9am the next morning. The surgeon was in surgery so we were able to go up to see the feeding team really quickly. Wysdom was a trooper he ate a few bites even though we know the tube area was bothering him. I guess the overall outcome from the feeding team was pretty good. We got rid of the 4am feed and we also were not stopped from feeding him oral. So his swallowing was okay. He did good. We still have to find a way to get him to drink, but he likes a small amount of solids so that is very good. On the g tube end though we had to watch him go through another painful cleaning of the area and a swab. This time we were put on a suspension of 2 new antibiotics which we were to do at full dose for the first week and a low dose for 3 weeks.

So in the meantime Wysdom got his first TOOTH!!! What an ordeal that was. I actually truly thought that he had RSV. He was so congested beyond belief. Cranky, coughing and vomiting all the time and I mean every feed. This was how he was when he got RSV at 2 months. We had to run the feeds at a slower pump rate of 90ml per hour and stop it quite often. If was horrible. We actually got our nurse to come in a check his lungs and also took him to an after hours clinic to see if he was okay. He did have a fever, but it was the congestion that freaked us out. Anyways... all is good and a little tooth has peeked out in the bottom at the front and let me tell you. It is SHARP!!!!!!!!!! Wysdom says.."Everyone beware...If I get a hold of you I will bite you and it will hurt"

He has also developed this fun habit at clapping when he hears music and also when he is told that he is a good boy or just when you tell him to clap. It is so adorable. I will have to get it on the camera when I can get a chance.

So now the teething crisis is over. For a couple of days we have had some tummy time and bumbo time. Wysdom has seriously not been on his tummy for months. He is very behind in his gross motor skill due to all of the g tube infections. However this week he surprised us and our therapist with his determination and strength. He is sitting up and rolling over a bit. He has managed to keep some of his strength. His arm strength is not great but his tummy muscles and trunk muscles are getting better.

After a few days of a regular routine.. we have hit another road block. Yup. Tonight we have noticed the FREAKING signs of a _______, _____, blank blank blank g tube infection!!!!!!!!! You get the picture. Ugh. I am going to demand a new tube or for them to send us to another hospital. This is crazy. This is the fourth one since October 31st. It is in the same spot and I am guessing the same internal infection that never goes away!!!

So in the morning we are of to the hospital. I will have to cancel his RSV shot for the second time that I had booked for Friday and more than likely cancel his sedated echo for the second time too. Needless to say that Stress is a word that I am all to familiar with.Today I brought out the lavender oil, the calming tea. It's pretty bad when your three year old knows mommy's favorite line. " I need a vacation":) I know things could be a lot worse, but I am just wanting my big guy to be able to crawl and play on the floor...Is that really to much to ask? I don't' think so!!!

Wysdom's smile is still strong and he even though he is in pain is still such a joyful spirit. Blyss is taking it all in stride and today even pulled out her own stethoscope and doctors binder like the nurse uses when she visits. What a pair I have here.