I've been sooooo negligent with this blog, I've had several friends write me over the last month asking how the boys are and if I was stopping the blog. Nope, just been very blog lazy.
I promise I'm doing the important part now: uploading the pics as we "speak".
Here's a quick rundown of what we've been up to:
We LOVE, LOVE, LOVE our new house/neighborhood. I've had several people ask for pics of the new digs (especially people interested in one story/more accessible plan) and I've been terrible about that. I realized I had started that blog months ago with some pics so
here it is for any one interested.
Not everyone with mobility issues can just build an accessible house I realize, we were blessed that we had enough equity in our first home and savings to make it work. Remember savings? Ha, one of the very few benefits of taking soooo long to have kids. Anyway, we obviously couldn't do everything we had wanted to do accessibility wise but we tried to do the things that would be very hard to modify later on. There's really not one space that Alex can't get into (good/bad for an almost three year old, ha,ha) and he just zooms around everywhere, often "racing" his brother.
I spoke about growth concerns awhile ago
here. We really still don't have the answers. We've met repeatedly with a nutritionist and modified his diet as much as possible given all of his food allergies to maximize calories but also nutrition. All of these months he has hovered right around 18 pounds despite the diet changes and JUST recently jumped up to 20 pounds but has not budged from his 27 inch length in many, many months. Spina Bifida may play a small role in his stature but all the doctors that we've talked to say that wouldn't just make him
stop growing. He's approximately the size of a one year old. A VERY cute one/almost three year old in my oh so biased opinion.
Nicholas is a whopping 22 pounds and 33 inches tall. He's also not even near on the growth charts, even if you subtract the three months he came too early but at least he's still making gains in height and weight. We know our children will be little. Hey, we've checked the mirrors, they didn't get the tall genes for sure.
Alex has went for all the growth hormone and other endocrinology testing and although he was on the low side of a couple numbers, he was not deficient in any one area. His skeletal age was consistent also with his chronological age. We have the option of growth hormone treatment but we are trying to give him time to see what his body can do. There are no guarantees that growth hormone treatment would even work for him and as with everything its not a magic bullet without potential consequences. Heck, both boys were even slowing their growth in the womb (
IUGR) and studies for using growth hormone treatment in children who began life this way and without clear growth hormone deficiency are not inspiring to say the least.
Alex's orthopedic doctor would like us also not to rush into this given his cervical scoliosis and the possibility that if he were to have a quick growth spurt, how it would impact his scoliosis. We have been prepared that its not a matter of IF he has to have spinal fusion surgery but WHEN so...........well there's a lot to ponder. I said this would be a quick update, huh? okay.....next......
Holidays were wonderful. There's lots of photos coming. The boys really got into it this year. Visiting family and friends, cookie baking (and eating ofcourse), seeing Santa although not sitting WITH him, ha,ha, picking out their first ornaments for the tree, opening gifts, etc. Watching the excitement through their eyes really renews it for me as well.
The only downside to the holiday time: managing it during cold/flu time. Our household has been hit with truly every virus that passes through. No exaggerating the boys have been sick AT LEAST twice of every month since August without exception. Each illness tends to last
at least a week. We have missed multiple family functions and get togethers with friends due to all of this. We even missed our own Thanksgiving dinner due to boys having Bronchitis and being at urgent care, and the day after Christmas Alex was admitted to the hospital for Pneumonia. Really this year has been exceptionally hard in that regard.
I think I've been spared two of the viruses, otherwise I've gotten them as well so I don't understand the idea that the little ones have to build their immunity. Is
my immune system on some extended vacation? If its somewhere warm and sunny, can I go too? okay enough whining.
There has been tons of happy stuff going on too. The boys are taking a "scribble/scramble" class each week which is really just a fun time to get messy with paint, glue, and then run/wheel around with their peers in a big open gym space. We are also starting a weekly swim class on weekends to get them used to the water.
Oh and they are talking, talking, talking..........sometimes its in the things that we have to wait for that are the sweetest sounds. I LOVE LOVE this stage. Where the boys are figuring out and sounding out words, making the connections to things, how to ask for things. Their little voices, oh love. Nicholas has about 100 words now and is really just taking off figuring out new words every day. I've never been a fan of shortening his name even though I know its almost a certainty that others will call him by that at some point. To me he will always be "Nicholas." However, there is something sooooo adorable hearing him trying to say his name even when he shortens it himself. He laughs when I call him by his name and tries to correct me and says "NICK". Argh. His favorite word/name is still one of his first ones: "Alex". Ofcourse he says it more like "ALE-UH". First thing he says when he wakes up and just about last thing he says at night. Over and over to get his attention, especially if Alex is trying to sleep. He is really crazy about his brother.
Alex is just starting to finally be verbal as well. He has maybe 30 words plus his sign language. He even made up his own sign for "wheels". It looks like he's asking to rev his motorcycle, ha,ha. He has just figured out how to say his brother's name and it sounds so sweet: "Nick-uh". But by far his favorite word is: Noooooooooo. And he SINGS it puckering up his lips as he does it. I'll have to get that on video before he stops it. He just KNOWS he's cute.
Okay the most recent news is that we have toured preschools for the fall. Can you believe it? Okay well maybe YOU can. I however am having a hard time thinking that my boys are almost three years old. I've never understood the statement "where does the time go" more than since I've become a parent. sigh. I feel relieved that we have already fallen in love with one and that the boys will be able to stay together. It will really be the first time that they have been away from me on a regular basis. They have a wonderful integrated program where Alex can have access to all kinds of adaptive equipment/toys, he'll be able to get all of his therapies in one place, and the playground looks wonderful and can play right alongside his brother (if he wants to that is). I'm struggling with the idea of it being 5 days a week. I guess I thought three year olds would be more like 3 days a week. Its 9:30-12:00 every day. It just feels like a lot to me right now but maybe by September it will feel different. Either way I'm sure the boys will be even more ready than their Momma is.
