Tuesday, September 30, 2008
Monday, September 29, 2008
Sunday, September 28, 2008
I haven't been able to forget this, so a few weeks ago I emailed Jennifer asking her if she's found this to be true. Take a look at her blog, Pinwheels, to see what she had to say about that. You can find it here: http://jennifergrafgroneberg.wordpress.com/
Thank you so much, Jennifer.
Saturday, September 27, 2008
When Dylan was in the NICU as a tiny baby, we were told that he had a hole in his heart. At his appointment with the cardiologist last week we were told that he has a very large hole. Based on what the surgeon said yesterday, he now has 2 very large holes. What is going on here?
As Dave and I were driving home from the appointment yesterday...or rather attempting to drive home in the rain, in Friday afternoon Boston traffic, with 2 very tired and hungry babies, I looked out the window and started to cry. I found that I simply could not wrap my head around all of this information. My son is having open heart surgery. He has 2 very large holes in his heart, one of which we didn't know about? He will be on a heart/lung bypass machine. He will be on narcotics. On a ventilator. Sedated. He will be in the intensive care unit again. Yes, there is a very high success rate - they told us 95% - but I am scared. This is all very real now.
Please don't misunderstand me - I am very hopeful. Ok, extremely hopeful, but scared nonetheless.
Dylan's surgery is scheduled for November 4. Will you please keep us in your thoughts?
Thank you. Much love to everyone who supports us!
Thursday, September 25, 2008
I know that I should walk in there with a whole list of questions...the problem is that I can't even begin to think of what to ask. If you are reading this and have some ideas for me, would you mind leaving them in the comment section? I think my brain is refusing to cooperate with me when it comes to this surgery stuff. Denial much?
Anyway - thanks for reading! We appreciate and love you all SO much.
Wednesday, September 24, 2008
"Dylan worked very hard! We worked on different positions - belly on boppy, side lying, back. He is doing better with tracking - even starting to move his head a little to track. He worked on reaching with his arms with therapist support."
I am telling you, this was like a totally different kid from the OT lesson a few weeks ago. He appears to be making some really nice gains and I am feeling so encouraged right now.
Here they are lying together:
Monday, September 22, 2008
Saturday, September 20, 2008
Friday, September 19, 2008
So, the consultation will be next Friday. To be perfectly honest, I am quite relieved that we are finally making progress with this heart surgery stuff. Oh I'm nervous, anxious, and completely stressed out as well mind you! But, I feel like for the past couple of months, it's just been this ambiguous dark cloud hanging over us...we knew that he would need surgery at some point, but everything seemed so wishy-washy. I've been living my life in anticipation. When will he start showing signs of heart failure? It should have happened by now! Wait, is he sweating? Is he sleeping more than usual? Is his mouth bluer than usual? Ugh...I will be incredibly happy to not have these worries constantly swimming around in my brain anymore.
Now we are moving forward. We have a set date to meet with the surgeon who will then give us a date for the pre-op as well as the actual surgery date. While I am not trying to wish my life away, I have to say that I am certainly looking forward to the day when my son is done with this surgery.
Wednesday, September 17, 2008
Sunday, September 14, 2008
Rest up now Little One... because this week is going to be slightly nuts.
On Monday we have the Social Worker coming over to help me out with insurance stuff as well as go over some possible helpful resources. Tuesday Dylan has his occupational therapy session. Wednesday is our follow-up cardiology appointment and Thursday the EI nurse is coming over. Whew.
Oh and yes that is a fuzzy pink blanket on my son. I guess that's what happens when your older sibling is a girl... and when your mom forgets to think long term while shopping for all of Cassidy's baby stuff. Pink...lots and lots of pink.
Thursday, September 11, 2008
Here is part of an article that I read from The Washington Post entitled, "Trig's Breakthrough".
"The wrenching diagnosis of 47 chromosomes must seem to parents like the end of a dream instead of the beginning of a life. But children born with Down syndrome -- who learn slowly but love deeply -- are generally not experienced by their parents as a curse but as a complex blessing. And when allowed to survive, men and women with an extra chromosome experience themselves as people with abilities, limits and rights. Yet when Down syndrome is detected through testing, many parents report that genetic counselors and physicians emphasize the difficulties of raising a child with a disability and urge abortion.
This is properly called eugenic abortion -- the ending of "imperfect" lives to remove the social, economic and emotional costs of their existence. And this practice cannot be separated from the broader social treatment of people who have disabilities. By eliminating less perfect humans, deformity and disability become more pronounced and less acceptable. Those who escape the net of screening are often viewed as mistakes or burdens. A tragic choice becomes a presumption -- "Didn't you get an amnio?" -- and then a prejudice. And this feeds a social Darwinism in which the stronger are regarded as better, the dependent are viewed as less valuable, and the weak must occasionally be culled. "
Check out the rest of the article here...
Now look up at Dylan's smiling face. This little boy has a life that is worth living...don't you think?
Wednesday, September 10, 2008
Sunday, September 7, 2008
Friday, September 5, 2008
So, I feel myself slipping into the dark side. I start thinking... Ugh. I don't want to have a baby with really pointy teeth. Or with an especially small mouth and missing teeth for that matter. And the snowball starts...I do not want to deal with filling out MassHealth disability forms. Nor do I particularly feel like calling my insurance company every day asking them to explain what in the world this newest bill means. Haven't we met our deductible yet? Who knows. I am already getting tired of my dogs barking and then escaping out of the house every single time someone from Early Intervention comes over...which is often. I do not want to stress out about muscle tone and trunk strength; about crossed eyes and failed hearing tests. I do not want to listen to people say words like retard, normal and special.
At this point Dylan starts stirring in his swing. I look over and see that he's trying to wake up. I walk over to him and lift him up out of the swing. His eyes open and he looks at me. I kiss him on the cheek, hug him tight and fresh tears start. These are the good tears though. The happy ones. If having Dylan in my life means dealing with pointy teeth and ugly medical bills, then that's what it means. It is all worth it. Every single thing is worth it.
Wednesday, September 3, 2008
So, Dylan is doing well. Yesterday he worked with his OT and EI nurse. He was able to focus on the OT's face and track a tiny bit as well, which is very good progress for him! His eyes have also not been crossing in as much, which is great news as it was a slight concern the last time they were here. The nurse mentioned that it appears as though Dylan is slightly hyper-sensitive - he gets overloaded easily. I am suppose to learn how to swaddle him (is that how you even spell that?) properly so that when he goes into that "spaz mode" as I like to call it, he will feel more safe and secure. Hopefully as he grows and develops more, this will pass.
Dylan also had his 2 month pediatric appointment today. His weight is now at 10 lbs 1.5 oz and he is 21 3/4 inches long! Woohoo! This is great news, as you may remember we are trying to reach 12 lbs before his heart surgery. He received all of his shots and only cried for a little bit. We are suppose to call and schedule a follow-up hearing test with the audiologist as his right ear has not passed twice, but I think we'll wait until after the surgery to go down that road again. All in all, I would say it was a great appointment.
Now...as I was driving home from this appointment I couldn't help but wonder about this icky knot in my stomach. I'm finding that I tend to get this when I am around medical people now. I think it may stem from our experiences of when Dylan was in the NICU. It seemed like every time I was approached by a doctor, I was told something negative...now I'm scared of them - those medical people. I'm scared that they will tell me something else that I do not want to hear.
And another thing that may have contributed to the knot. I noticed that three times, Dylan's doctor used the word "normal". And it was used not in reference to Dylan, but rather in reference to babies who apparently are not like Dylan - these are the normal babies. Yes, I know that like Dylan, I too am hyper-sensitive - especially when it comes to words like this now. I just wish she could have used the word "typical" instead. Because my son is normal! Sheesh, this kid is alot more normal that I am! : )
I wonder if I will ever get used to all this stuff. Will I ever stop being so sensitive about words and the way that people may refer to my son? Will I ever start to feel more comfortable around doctors and nurses and not expect to hear something bad? When will this life that I did not expect start to feel right to me?
Monday, September 1, 2008
Check out some recent pictures of Dylan and me. Please tell me this - seriously, could he be any cuter? Nope. Didn't think so. : )