Our Moms group has made a fundraising page for Annie and her family here:
http://fnd.us/c/8hdP8/sh/e2s8N0
Wednesday, February 19, 2014
Tuesday, February 18, 2014
Day One :
Monday, February 17, 2014
Daycare #3
There are usually about 3-4 days per year where some change happens that make me feel like it is my first day back to work after having Parker all over again. Usually, it is after a break (leaving him after the summer stinks!). It is that heart-twisting pain that is hard to put into words. The last 6 months or so have been great in terms of how much time I get to spend with Parker that I almost forgot what really leaving him for 10 hours a day feels like. I got to hear him babbling in the back seat on our long commute, and because his daycare was so close to me, I got to go to most of his therapy sessions on my lunch break. Selfishly, it was so nice to be close to him so much.
We painstakingly decided that a daycare change is the best move for him. And when I say painstakingly, I mean that I had to make sacrifices (selfish, again) so that he gets what we feel is the best care we can provide. I literally had a little pro-con chart going on in my head :)
Essentially, we underestimated how long my commute would be, especially in the winter. There were some days that Parker was spending almost 2 hours in the car. Most days, about an hour an a half total. Had he been getting incredible care, I would have been able to justify that commute for him, but in reality, we knew from our last daycare experience that daycare can really be more like "school" and less like "supervision." His last daycare just wasn't providing that for him. They loved him in their own way and met his general needs, but Parker needs more than that. He needs people that have a passion for child development, have the drive to learn about him and what can help him progress, and love him so much that they are willing to be his advocates when Matt and I aren't there.
So for me, even though it is little-contact car time, I lose a large chunk with my baby, and forfeit the ability to go to any of his therapies with the exception of the summer. We aren't quite sure yet how many of these therapies Matt will be able to attend, though his work is only 10 minutes away. The reason I say this part is selfish is up for debate. Even though I was getting to attend Parker's therapies, it is hard to implement the skills we learn and work on because our awake time with him is limited during the week. I really enjoy being at the therapies, getting first-hand information, and staying in the loop, but it is truly more important for his teachers to be there and learn, assuming they soak up everything they can. Luckily, it is only a few more months 'til summer!
We are hoping that this will be Parker's last move until he goes into a special ed pre-school at age 3. The continuity and longevity would be great for all of us!
More on his new daycare later this week!
We painstakingly decided that a daycare change is the best move for him. And when I say painstakingly, I mean that I had to make sacrifices (selfish, again) so that he gets what we feel is the best care we can provide. I literally had a little pro-con chart going on in my head :)
Essentially, we underestimated how long my commute would be, especially in the winter. There were some days that Parker was spending almost 2 hours in the car. Most days, about an hour an a half total. Had he been getting incredible care, I would have been able to justify that commute for him, but in reality, we knew from our last daycare experience that daycare can really be more like "school" and less like "supervision." His last daycare just wasn't providing that for him. They loved him in their own way and met his general needs, but Parker needs more than that. He needs people that have a passion for child development, have the drive to learn about him and what can help him progress, and love him so much that they are willing to be his advocates when Matt and I aren't there.So for me, even though it is little-contact car time, I lose a large chunk with my baby, and forfeit the ability to go to any of his therapies with the exception of the summer. We aren't quite sure yet how many of these therapies Matt will be able to attend, though his work is only 10 minutes away. The reason I say this part is selfish is up for debate. Even though I was getting to attend Parker's therapies, it is hard to implement the skills we learn and work on because our awake time with him is limited during the week. I really enjoy being at the therapies, getting first-hand information, and staying in the loop, but it is truly more important for his teachers to be there and learn, assuming they soak up everything they can. Luckily, it is only a few more months 'til summer!
We are hoping that this will be Parker's last move until he goes into a special ed pre-school at age 3. The continuity and longevity would be great for all of us!
More on his new daycare later this week!
Wednesday, February 12, 2014
Sweet Annie.
Through GiGi's, we have met some amazing people that have become like family to us. The Wojtowicz family, with their three beautiful girls, are a part of that family. Annie, their youngest, has Down Syndrome, and very serious heart issues. She had surgery on Monday, and is very much struggling in her recovery. All of our hearts are breaking for this family, prayers and positive thoughts are constant, to the point of begging for relief for Annie. As a mommy, I can't imagine the pain of watching your baby suffer so much. The message to us all is to take nothing for granted, and to let the small stuff go! Our babies are gifts that we cherish and love so deeply.
Please keep Annie in your thoughts. She is a beautiful, strong little girl that deserves a life free from suffering. She has a Facebook page that we are hoping to gain support for, because this family deserves our support. 
Wednesday, February 5, 2014
Saturday, February 1, 2014
Audiology, ENT, AND Ophthalmology- January 2014
As for ophthalmology, we realized (sadly) that Parker's glasses were really not starting to fit better after all...his mullet hair had just been helping them stay on! After his last haircut, they went right back to fitting as loosely as when we first got them. So, I moved up our ophthalmology appointment from mid-February to yesterday, because I don't see how they could magically fit by then. Dr. Curnyn wants Parker to go under general anesthesia to get more in depth eye scanning and to be fitted for contacts, in the hopes that we can have him wear contacts until his glasses fit properly, and Parker's brain recognizes the benefit of having them on. Basically, he would wear the contacts for a week at a time, WE would take them out for a break, and then put them back in for the next week. YIKES. Matt and I have never had glasses or contacts, so this is a bit terrifying for us. But in reality, if Parker can't see, then he can't learn from or be motivated by his full environment.
We are desperately trying to see if all of these procedures can be done in one shot. We know it is unlikely, because getting an audiologist, ENT, and Ophthalmologist in the same room at the same time will be hard. We are hoping we can get lucky and they will do what is best for Parker. Additionally, I am reaching the end of my sick day bank for work, so any consolidating that can be done helps there too.
Whew...we are tired.
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!
Subscribe to:
Posts (Atom)