Well it's just a lazy day here . My daughter Autumn went to teakwondo with her Dad this morning and now she's playing with her neighbor friends. Isaac's taking a long nap and I'm catching up on the laundry. Sam (my husband) is playing a new video game on his playstation 3. He's my other kid..LOL. So what comes next for little Isaac? This Tuesday Isaac has a Neurology appointment and then on Friday, Feb. 6th he has a follow up appointment with the ENT. The follow up appointment is for the procedure he had done a couple of weeks ago to replace his right ear tube. I'm sure the doc will also want to talk to me about his hearing test too, which I'm kind-of not looking forward to. In March we will we will be seeing the Pulmonologist, Endocrinologist and the Opthalmologist. April is still looking uneventful other than a trip over to Shriners Hospital. The Pulmonologist wants to start weaning Isaac off of his diuretic meds in the spring. He started taking this because he had severe edema last April that caused him to gain as much as 8 ounces a day of fluid! Since Isaac has a rare chromosome disorder and is a mystery, the doctors really couldn't figure out what was wrong with him, so they diagnosed him with Lymphedema. Well thank goodness the diuretic worked for him and he lost all of the fluid, poor little guy, looked like a water balloon for awhile. Lynn, my home nurse also gives him a head to toe massage everyday to keep the fluid circulating out of his body(yes, he is very spoiled.) Anyway, weaning him off these meds is going to be a process, but he will hopefully do just fine.Isaac continues to do very well on his oxygen levels and is staying infection and pneumonia free, which is amazing for this time of year! I have been exploring the option of possibly transitioning him towards the spring and summer months from home therapy to attending the center at the Guild School. This would be great for Isaac, but especially good for me as it will be a good outlet for us. Isaac is limited to only 6 therapy sessions per month while recieving home therapy. This includes PT and ST. If we were able to attend the center he would have more options. This of course is only something I am considering and the doctors will have to say that Isaac is well enough or not too medically fragile to phase into this, So we will see what happens. Have a Great Week! Love, Colleen
Today the dietitian came for a visit and Isaac weighed in at a little over 21 pounds and he is 28 1/2 inches long. He's still under the 3rd percentile, but that's ok, he's just going to be the little man. When I look at him he looks kind of like Autumn did when she was only about 9 months old, so he's just a little thing. I posted a couple of pictures on the site, such as Isaac with his Aunt Cassie and Autumn having a snow day last month. If you are getting these updates by email you probably can only see the journal entry. (Not too exciting). If you want to see the pics or go to the blog simply click on the subject line (such as Isaac's getting big) it will take you to the website. I'm really excited that I was able to add an email subscription like I had on Caringbridge. Speaking of Caringbridge I LOVED Caringbridge, but I just wanted something a little different since I have been using it for over a year now. I would highly recommend Caringbridge to anyone who has a child with an illness or disability as it is a wonderful way to keep people updated and it's much much easier than Blogspot. One reason I switched to blogspot is because I want to be able to promote more awareness for children with rare chromo disorders or special needs. It's very important to me to let the world know about children who can be born with a wide variety of rare chromosome disorders and multiple disabilities. Well Sam and I will be celebrating our 10 year anniversary on Valentines Day. We are planning a weekend away at the resort. All the care for Isaac is already arranged (woo hoo!) and Autumn is staying at my Dad's. I can't wait! In a perfect world I wish we could go away somewhere warm like Hawaii where my in-laws have been the past couple of weeks, (Ok , so I admit I'm a bit jealous) but anywhere alone with my hubby for an entire weekend is a real treat!
Speech...not always easy for a little guy with a trach and a developmental disability, but I've been trying to teach him sign language the past 4 months. The day we noticed he was waving goodbye to his home nurse Linn was quite a day as we both wanted to cry tears of joy. It took us a minute to realize what he was doing! Sign language is not easy for Mr. Isaac. He was born with some fingers that do not bend easily and moving his hand towards his chin requires some coordination. So in the photo I'm teaching him the sign food. It takes a minute for him to get the hand down from the top of his head down to his chin. Since just recently he has been able to tolerate the valve for more than an hour, he is finally starting to make sounds when he is happy or trying to express himself. Very cute. He also likes to play a game where he puts his hand to my mouth and I make funny noises and he laughs so hard. He is wearing his muire valve (speaking valve) most of the afternoon without any oxygen and keeping up his saturation levels! YAY!
Wow, time flies when you're having fun! I can't believe that Isaac will be 2 years old in April! For someone who was possibly not supposed to survive birth, well...we're doing pretty good. Many emotions flood me when I think about the celebration of this milestone. It is a celebration, but also bittersweet as he still is very medically fragile and has some major developmental delays. I have many goals for him this year now that we are not so much into survival mode. Don't get me wrong...we are still in survival mode, but we are not in the hospital as much...thank goodness! Last year my main goal for Isaac was to stay out of the hospital. Well we did a pretty good job in 2008. Isaac's most recent trip to the hospital was an outpatient procedure on Monday January 12th to have his right ear tube replaced and a sedated hearing exam done. The exam showed that Isaac has hearing loss in both ears. All we know is he lights up whenever we talk to him and he loves his Mama. The above photo is of my Dad with Isaac...we were celebrating a belated Christmas right after the New Year.
