Way to go Parker! Mommy and Daddy are so proud of you!
Wednesday, January 22, 2014
Tuesday, January 21, 2014
Just Like Mommy and Daddy
With Parker's speech and language difficulties, I love the technology gives me the chance to expose him to different types of media and text that can hopefully expand his language tool kit. He will need every support he can get (and so will we). I don't believe in using technology as a babysitter, but I do believe, very much, in harnessing the educational components!
Second Guessing
Matt and I have already been on the emotional roller coaster in terms of genetics enough times, I think.
When I was pregnant, after having pushed for probabilities and stats, we were told that the doctors and nurses had never seen a baby with perfect measurements and a small bright spot on the heart come out with Down Syndrome or a genetic abnormality. You know how the saying goes.....you hear what you want to hear. We left there brushing off the thought.
Last April, Matt and I saw a genetic counselor, who told us that we did not individually need blood testing, but instead, that Parker's genetic tests were enough to dictate our future risks. We were told that our risk is 1 in 67 for future genetic abnormalities....which is about 8 times the normal risk for our age, but is not supposed to be affected by the fact that Parker has two genetic issues. We again took this as gospel truth.
Every time we take Parker to the NICU for follow-up evaluations (mainly for our own edification and their research), the NICU doctors, one of which we have mentioned a lot and really respect, are extremely adamant that we be closely followed by a geneticist. This last week was no exception. This NICU doctor was one we hadn't met before, and he couldn't seem to believe that the genetic counselor did not need to test our blood to be able to accurately assess our risks. He told us that raising two children with such genetic abnormalities would be too difficult. Ugh.
This doctor was so concerned about the information we had received that he took down my information and called the doctor at the genetics office himself, as we had only previously spoken with the genetic counselor.
There were several hours where I wanted to throw up. I felt robbed of security...I had accepted the 1 in 67 odds....but nothing more. Call it naive....but again, you hear what you want to hear. The NICU doctor ended up calling me back, saying that the genetics doctor said our information was accurate but that he would look into our case again to review. We are waiting to hear from them to confirm this week.
The take-away, for me at least, is to get 2nd (and 3rd and 4th) opinions, and to try to the best of my ability to reject all "absolutes." We have no guarantees in this life...none. We aren't promised or owed any fate or fairness. We love Parker with all of our hearts, and we want nothing more than to continue growing our family. We will make peace with the family we are blessed with, even if it doesn't end up the way we thought it would.
When I was pregnant, after having pushed for probabilities and stats, we were told that the doctors and nurses had never seen a baby with perfect measurements and a small bright spot on the heart come out with Down Syndrome or a genetic abnormality. You know how the saying goes.....you hear what you want to hear. We left there brushing off the thought.
Last April, Matt and I saw a genetic counselor, who told us that we did not individually need blood testing, but instead, that Parker's genetic tests were enough to dictate our future risks. We were told that our risk is 1 in 67 for future genetic abnormalities....which is about 8 times the normal risk for our age, but is not supposed to be affected by the fact that Parker has two genetic issues. We again took this as gospel truth.
Every time we take Parker to the NICU for follow-up evaluations (mainly for our own edification and their research), the NICU doctors, one of which we have mentioned a lot and really respect, are extremely adamant that we be closely followed by a geneticist. This last week was no exception. This NICU doctor was one we hadn't met before, and he couldn't seem to believe that the genetic counselor did not need to test our blood to be able to accurately assess our risks. He told us that raising two children with such genetic abnormalities would be too difficult. Ugh.
This doctor was so concerned about the information we had received that he took down my information and called the doctor at the genetics office himself, as we had only previously spoken with the genetic counselor.
There were several hours where I wanted to throw up. I felt robbed of security...I had accepted the 1 in 67 odds....but nothing more. Call it naive....but again, you hear what you want to hear. The NICU doctor ended up calling me back, saying that the genetics doctor said our information was accurate but that he would look into our case again to review. We are waiting to hear from them to confirm this week.
The take-away, for me at least, is to get 2nd (and 3rd and 4th) opinions, and to try to the best of my ability to reject all "absolutes." We have no guarantees in this life...none. We aren't promised or owed any fate or fairness. We love Parker with all of our hearts, and we want nothing more than to continue growing our family. We will make peace with the family we are blessed with, even if it doesn't end up the way we thought it would.
Monday, January 20, 2014
Daddy Rocks
Last weekend, Matt and I had the chance to go to his work holiday part/annual awards celebration. It was definitely foreign to me! There was a lot of fanciness and show -which was interesting and fun! It is always an eye-opening time in a marriage-- to see your partner's strengths that are completely independent from your family. It is really fun for me to see how awesome Matt is at work! He has been with this company for about 6 months now, and was the only person in the company nominated for two different individual awards! His team also won a group award. And the best part is that I am allowed to brag about him :)
Aside from the awards, the event itself was memorable. It had a Great Gatsby theme, and encompassed multiple ballrooms in a downtown hotel. Like I said....definitely nothing like the end-of-the-year celebrations teachers have (though I love those too!).
Special thank you to Auntie Morgan, Kevin, and Brody for watching Parker for us :) It is always nice to have them over, and snuggle time with P is hard to resist!
Sunday, January 19, 2014
January Evaluations
Evaluation is really becoming a word that I loathe. It sucks as a teacher/professional...but no one wants to hear it as a Mommy. Last week, we had our NICU follow-up, which I think is really neat. We had the same set of therapists from the NICU in the hospital that saw Parker when he was born. There are also nurses and a neonatal doctor in the room. It is always nice to see kind, familiar faces. It is also a good chance for me to recap Parker's history with therapy-- I am a firm believer that reflection and summary allow for great epiphanies.
The bottom line from this evaluation was that Parker's gross motor skills are strong-- he is standing, army-crawling, sitting up, etc....but his receptive language is alarmingly weak. Meaning he isn't processing or is very slowly processing the language around him---which is a delay that sneaks up on you in some ways. A gross motor delay is very clear...is he walking? no? okay. delay... We get CONSTANT comments about what a good baby he is, and how easy and mellow he is when we are in otherwise tense situations. No stranger danger, no tears when Mommy leaves, very rare tantrums. I love his sweet little personality with all my heart, but I am afraid. I refuse to get too far into the "he isn't...." thoughts, but some days, it gets so, so scary. The panic surges to the top of my throat when I don't reel my thoughts in off that path of "What am I not doing for him?"
Tomorrow, Parker has his Early Intervention 12-month evaluation. I decided to look at the evaluations his therapists do beforehand to guide the conversation and decision-making. He is showing a 76% delay in receptive language.....in other words, his receptive language is at that of a 3 month old. Obviously, I almost threw up after reading that.
The best that I can do is fight for more services for him and to relieve myself of some of the guilt that comes from not spending every second trying to make sure he is doing something purposeful. Sometimes, you have to clean or shower or eat or breathe. I also need to relieve myself of the fear that I feel. Will he speak? Will he read? Will he write? Will he find what he loves? I need to let those questions go for a while.
This weekend will be full of what I like to call "Snuggle Minutes," where P and I stop what we are doing and smush really close. They are my favorite thing in the whole world.
The bottom line from this evaluation was that Parker's gross motor skills are strong-- he is standing, army-crawling, sitting up, etc....but his receptive language is alarmingly weak. Meaning he isn't processing or is very slowly processing the language around him---which is a delay that sneaks up on you in some ways. A gross motor delay is very clear...is he walking? no? okay. delay... We get CONSTANT comments about what a good baby he is, and how easy and mellow he is when we are in otherwise tense situations. No stranger danger, no tears when Mommy leaves, very rare tantrums. I love his sweet little personality with all my heart, but I am afraid. I refuse to get too far into the "he isn't...." thoughts, but some days, it gets so, so scary. The panic surges to the top of my throat when I don't reel my thoughts in off that path of "What am I not doing for him?" Tomorrow, Parker has his Early Intervention 12-month evaluation. I decided to look at the evaluations his therapists do beforehand to guide the conversation and decision-making. He is showing a 76% delay in receptive language.....in other words, his receptive language is at that of a 3 month old. Obviously, I almost threw up after reading that.
The best that I can do is fight for more services for him and to relieve myself of some of the guilt that comes from not spending every second trying to make sure he is doing something purposeful. Sometimes, you have to clean or shower or eat or breathe. I also need to relieve myself of the fear that I feel. Will he speak? Will he read? Will he write? Will he find what he loves? I need to let those questions go for a while.
This weekend will be full of what I like to call "Snuggle Minutes," where P and I stop what we are doing and smush really close. They are my favorite thing in the whole world.
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