Monday, May 3, 2010

This is Andrew at about 17 months. As you can see he is very excited to be out and about:)

Andrew has been slowly making progress in the last couple of months. He now "scoots" around in the crawling position but is not getting much lateral movement from the hips. We are currently looking at surgery on may 12th to help straighten his legs out. He will be put in full leg casts for 8-12 weeks that will be adjusted weekly. At this time he will also be undergoing another tonotomy (heel chord lengthening) both procedures will be done under general anaesthetic at hospital for joint diseases. We will be staying over night, which should be very interesting. I hope they understand I will will not be leaving either? Think I could fit in the hospital crib with him? good thing I dropped a pound or two;)

Unfortunately he will be casted most of the summer and I am tyring to figure out ways to help him still enjoy his summer without the use of the pool, sprinklers etc:( I know he will be just as resilient as he has been in the past. This procedure is the next step towards allowing Andrew to start walking eventually. It seems that currently his physical therapy has gotten him as far as he could possibly get. As a matter of fact his doctors are surprised he has the ability to do what he has with his physical limitations. Like I said, he is determined and stubborn which will get him very far.

well, that's all for now......send him some good vibes:) will keep you all posted post surgery!

Thursday, December 17, 2009

Wonderful progress!

This is Andrew at about 12 months.

I am happy to share some really wonderful progress Andrew has made. As his brother Jesse began to crawl at about 10 months, Andrew would still sit around and watch him, unable to get around like his brother...about a month later he began the commando crawl.....He puts himself down on his stomach from a sitting position and pulls himself about upper arm strength....he continued with this trend as his brother began to pull himself up at around 12 months and cruise around the furniture.....

Right after his 1st birthday we started making some incredible strides. Andrew was able to be placed on his knees and was strong enough to stay in place for almost ten minutes......a couple of weeks later he began to actually pull himself up in to this same position with his little butt resting on his step.....he began to push himself up into a crawling position and then a two weeks later began to rock back and forth.....more recently he has figured out how to get himself from a lying to a sitting position unassisted. This is a tremendous feat considering he has limited strength in his lower body and has nothing to anchor or weigh him down while sitting up. Just this week he has begun to get into a crawling position and alternate his hands while pulled the rest of his body without collapsing down onto his belly.......

Every day, Andrew continues to amaze me. He is a very happy, generous, sweet little boy who will give you the diaper right off his butt, lolololol....he doesn't complain or whine about what he cannot do. He just continues to push on and figures things out every day. Andrew is persistant, grateful, patient, happy, couragous, and possesses an amazing strength of spirit....We could all learn something from him, I know I have.

Thursday, September 10, 2009

day care blues

So, although i didn't go back to work this sept. 09, I am truly hoping to get back next school year. I would have gone this year but I feel that Andrew still needs some extra time and attention with his therapy that he won't get in day care......

Still, I felt the need to at least start seeking out options for next year in the hopes he will be fully if not mostly recovered...well, did i hit an unforeseen snag!
It turns out that the day care that i was planning on sending the boys to won't take Andrew if he isn't walking by then. (he will be just short of 2 yrs old.) Although in my mind I suspected this might be the case, I guess confirming it was a somewhat hard to digest....They wouldn't even take him in the younger group...not that i want to separate him from Jesse but I was still checking my options.....

Thank you to all out there who made some wonderful suggestions and sent me in the direction for some alternatives...i will check them all out:) That's what this is all about, sharing information and for those of you who have, that info has been invaluable!
Thanks so much, and to all the teachers out there who just went back, good luck and appr. 82 days till Christmas break, lolol:)

Wednesday, September 2, 2009

It's sept:(

So, like every other teacher in the world, I feel this is the week of reckoning:) Work starts next week and Although I will not be joining my fellow educators I feel that same doom, excitement "man, this summer went fast" feeling:) I guess this summer has been so great due to all the company I have had and now that everyone is going back to work I'm sad and feeling like I have a long winter ahead of me....

This past winter I did not get out of the house much at all..I found it very difficult to pack up two infants and travel anywhere there wasn't an extra adult around to help out....Now that the boys are bigger I'm hoping to get out, join a class, meet some more moms, etc...... People always would say, well I had kids a couple years apart, i hauled them around etc....For those of you out there in that situation, let me tell you...It's not the same...Now, I'm not saying it's easier or harder, just not like having two babies that need to be carried around everywhere....Which brings me to the point of today's blog.

Interestingly enough, I will now know how that feels. Under normal circumstances both my boys would be getting more mobile, crawling and in the next couple of months walking around the house....I will not experience this due to Andrew's impediment....Now Jesse crawls around the room, and Andrew plays with his toys...soon, I will be able to take Jesse by the hand and help him navigate through the world from his three foot high bird's eye view while I hoist Andrew back up onto my hip....i find this so ironic as I have been telling people throughout the boys lives that twins are just different to care for especially in their infant stage. Who knew I'd get to experience both sides of this coin.....

Friday, August 28, 2009

good news

so we went the other day to see a new doctor. I guess this would have been like a third opinion from a pediatric orthopedist. His name was doctor Jordan and he was recommended by my Physical therapist......The exam was more thorough than anything I have seen as of yet. He checked all of Andrew's muscles and whether or not they were engaged. He was the first doctor to tell me that he felt due to Andrew's current ability that he would be walking! I almost cried when i heard this. I mean everyone has been optimistic and hopeful but to finally hear it form a specialist was amazing! That has always been my obvious fear for him....... Unfortunately he could not give me a timeline,but at least it was a prognosis...all other doctors up till now have not been able or willing to give me any type of prognosis. I have to admit that when I asked my other doc and his response was "I'm not sure" I almost threw up right in his office and have been subsequently sad and at times very depressed. I try not to show it, but to many it has been obvious. Jesse is now getting very mobile doing the belly crawl and I always find myself wondering if Andrew is looking at him and wondering why he isn't doing the same thing? The other day my husband asked me this question and then said, when Jesse crawls around he feels like giving Andrew ice cream:) I guess I won't know the answer to this question until Andrew can verbalize what he is thinking. I'm hoping by then, there will be nothing to wonder......

Tuesday, August 25, 2009

gaining strength

so, you know that jumpy thing that babies use before they start walking? well we have one that is very springy... normally I'll put Andrew in it and he plays with the stuff at arms length but there isn't usually much going on below the belt so to speak...well, the last week i have noticed significant improvement! He is actually starting to jump with his legs...not sure if the movement is coming through the knees or straight from the hips, but it's certainly progress:) Guess we are starting to make some connections...very exciting! My day dream today is to end this blog as I announce, "Andrew took his first steps!"

Sunday, August 23, 2009


In the last couple of months, I had been inquiring whether or not Andrew needed to see a neurologist...He had seen several orthopedists, a geneticist, and even a couple pediatric podiatrists, who all felt that a neurologist was unnecessary...In June we went for a fourth opinion orthopedic consult and this one strongly suggested we see a neurologist just to make sure there were no other issues that would account for the lack on movement in his legs.This is what I had been trying to avoid for months...In my mind, right now everything was fixable. What if we went and found out something was worse than we had already anticipated and planned for.....I know that sounds cowardly, but sometimes i get to a point where I just need to stop for a couple of moments and just breathe... just a week without a doc appt.......a couple of days not to have worry about something new, lack of progress, another obstacle, etc......
Finally though (at 8 months, i figured it's time...So, i did my research (thanks to all of you who helped and sent referrals) and found a neurologist for an initial consult.......Needless to say she examined him and felt that due to his lack of reflexes, wanted to have him checked for congenital defects near or on his spinal chord.....Although I was not surprised I was taken by surprise....I know that sounds paradoxical but it's how i felt...Kind of like, why would i be in shock that neurologist would want an mri, but on the other had every doctor up until now had told me that this was strictly orthopedic..I was so angry! I felt mad at my doc's, at myself for waiting these last couple of months, thinking I had somehow impeded on his progress by not gaining more information that could have helped.....
Well it took us almost 2 months to get in for an MRI and that was traumatic in itself.....Since the actual MRI takes up to 40 minutes Andrew had to be anesthetized under general.....I was worried about that and to add fuel to the fire, his brother ironically began running a fever the night before.....So My husband and I went in super early and had the procedure done. first they put the mask on, which i could not watch (my husband sometimes does the dirty work) and then put the IV in.....we waited patiently and 45 minutes later, he was awake and smiling....Apparently the moment he woke up he saw the nurse and put his hands up as if to say, "excuse me but could you cuddle me;) lolol..Needless to say the nurse obliged and Andrew made yet another Friend and fan:) We waited for three days to hear from the neurologist, only to find out that there was absolutely nothing found on the MRI! 2 months of stressing for nothing....well peace of mind now i guess:)
Anyway, we need to follow up with her to see if his reflexes and movement have with all of our doctor's we never get a straight answer or even a def course of treatment or prognosis since this affliction is not well documented or understood......As usual we hope for the best and work hard to continue giving him the best doctors and treatment options we can find:)