Sunday, April 25, 2010

So sad!!!

I am at a total loss for words. I have been absent from blogging for a couple of weeks. Tonight I just decided to pop into the Down Syndrome blogging community and heard the most devastating news. One of my fellow bloggers eight year old daughter Carly passed away. This is such a shock and is quiet devastating. Many,many times I have been comforted and inspired by Carly's mom as she offered me support and advice and shared her life with me. I am truly heartbroken for her family. I have come to learn after the loss of my mom a couple of months ago and now after Carly's death that life is so fragile, so precious and so unpredictable. Please join me in sending prayers and thoughts to their family at this time.

Thursday, April 8, 2010

The Echo Results Are In....

We met with our cardiologist today to get the results of an echo that we had done about a month ago. I will not keep you in suspense. Can I just say how nervous I was in the meeting. I didn't feel nervous before the meeting. But as soon as the cardiologist started to talk. I started to feel anxious and felt myself breathing faster. I felt like what he was saying was right out of Charlie Brown. I couldn't hear clearly for a few seconds. The sound was all distorted and blurry.

The results are good.
Not amazing. But good.
Amazing would be "your son looks great and we don't have to see you again".
We did not get that.
What we got was a solid good for now.

What that means is this that there is some regurgitation or leakage on the left side of the heart and that is minimal or mild(Yeah).And yes this is common to have some mild leakage. However and yes there is a however. There is some leakage on the right side and also some stenosis or narrowing. (okay, so what does that mean?) It means that this is something that we have to watch and monitor. They don't know what will happen. Right now the good part is that Wysdom doesn't have to go in for another 6 months or so. Then after that check up we will do an echo in a years time if all looks good. At that time they will reassess if any medications or surgery is needed. Right now his heart rate is good and therefore his heart is not working extra hard. They are just not sure what will happen as he grows over the year or years. If this same amount of leakage that is on the right now was on the left side of the heart we would have to worry now. However because it is on the right it gives us some time. Let me just say I was so out of it that I jumped in and said to the cardiologist " so what he needs surgery in a year??????!!! He was like "no what I said is that he needs an echo in a year.

So yes I am very happy. However I am not going to lie. I am a little apprehension for the future. I wonder if this is common feeling with other heart mamma's out there. I left feeling good that we have another year or so but I also have this little whisper in the back of my head. Anyways I am sure once I get back into the routine of the next day or so that I will forget about the worry for now and just continue enjoy and love Wysdom. (And Blyss)

Next on our agenda is a MMR shot for Wysdom in the morning, a physical for me. Next on our agenda is to check out why Wysdom had a bad hearing test result earlier in the week. We need to plan to see an ENT again to see if this little guys tubes are still in. Anyways that's something to do next week.............. :) Now off to relax and watch some TV.:)

Monday, April 5, 2010

More than surviving....we're thriving

Okay I don't want to jinx anything, but things have been going pretty well for Wysdom. He has joined his first baby group. I know it's late but this is the first time that he hasn't had any pressing medical issues. We still have many issues and things to do however nothing that prevents us from a little FUN. So Tuesday's we head off to Kid's Ability and join several other moms for some songs, books and puppets and toys. It has only been two weeks, but Wysdom loves it!! This Friday he will also join a music therapy group which we are really excited about.

Physical therapy has been a challenge but we are reaping some of the hard work. Wysdom despite all of his medical issues is continuing to do well. He has now mastered sitting-he did this about a month and half ago. We are really proud of him for this achievement. Can you believe we were once told that they were unsure if he would be able to sit. Although he does not go on his tummy now since the g tube, he has still developed strong muscles in some areas of his body. We are now working on crawling or rocking on all fours (with tummy of the ground). Last week we tried standing for the first time too. The therapist used an apparatus called the "stander". Okay at first I was a little afraid and skeptical. They had this old piece of equipment that look quiet torturous. However it worked out really well and allowed him to start using more of his leg muscles. We are going to focus on his standing at home now. We are so excited to move forward with the next goal and we can tell Wysdom is too.

Somehow withing the last month or so we have also found out the Wysdom is more of a social butterfly than a shy little guy. He has blossomed and is open to so many more people. He is laughing and clapping and spreading lost of joy. One of is favorite things now is to take a car ride. We can see a "Road Trip" in the near future.

We are having a lot of fun and just wanted to share some of the good stuff that happens too. Yes we still are busy with cardiology appointments, eye patching, and feeding issues, but somehow things seem to be progressing.

We have had one big feeding assessment done about 2 weeks ago by Sara from Talk Tools that we are grateful for because now we have a plan for Wysdom's feeding and speech issues. As well we have some big appointments coming up this week too. Our big cardiology appointment is on Thursday and we are going to our first Down Syndrome Clinic in the morning. So yes it is still really busy...but we are more than surviving!

Happy Easter

Hi Everyone. Just wanted to wish everyone a Happy Easter. We are having a good time. Hopefully everyone had lots of fun decorating eggs, doing Easter egg hunts and spending time with your family. We have lots of updates to post about. I will update later in the week all of the great things that Wysdom has been up too. We also have one very important appointment later in the week too. So there is lots to talk about...but so little time:)But now I am off to our third Easter Egg Hunt.

Have a great day everyone!!!