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

MRI

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 progressed...as 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:)

Saturday, August 22, 2009

teething

Andrew is slowly cutting his 4th tooth and the therapist feels this is contributing to his sensory issues....The last week has seen progress and he is starting once again to tolerate pressure on his hands and feet....I'm hoping we do not have these type of setbacks every time he pops out another tooth but you never know.....either way, i guess a couple of days isn't so bad......

Thursday, August 20, 2009

helpers

i forgot to mention all the wonderful people who have helped us in our journey thus far.....

I have an AMAZING physical therapist who is with me two days a week...her name is Chris and I was introduced to her through early intervention services... She has been such a rock for me emotionally in addition to helping Andrew with his skills from the beginning.I know that he would not have accomplished anything close to to what he has without her.......

My pediatric orthopedist who was referred to me through the tireless efforts of my cousin Karen, who, from the minute we realized Andrew needed help was like my own personal telethon, calling all of her connections effortlessly until she found me the best doctor she could...thank you:) She continues to show her support everyday with inquiries and love for both my boys....

Dr. G, who had literally turned Andrew's feet around and has worked to ensure that Andrew has had the best and most efficient care possible......

Early intervention was recommended to me by both my pediatrician and orthopedist. Carol, my coordinator has been amazingly supportive in both her efforts and organization of Andrew's care.... This program is run through the sate and has been provided to us at no cost......

To my friends, who have constantly supported and inquired about Andrew's progress through phone calls, emails etc..... you have been with me from the moment i got pregnant through every obstacle and milestone we have pushed through...your love and support has been immeasurable and I cherish you always.....

To my parents, who have never been absent from babysitting duty for Jesse or even one doctor's appt..... They have rallied from the minute the twins were born and have done nothing short of support my family in every way possible...i love and appreciate you both more than you could ever imagine.....

To my husband....I have been on un-paid maternity leave for the past year and have just extended for at least another year.....He does a 10 to 12 hour day, rushes home, takes five minutes to himself and jumps in with the babies......He has been supportive both emotionally and physically, even when i know he is exhausted from his numerous responsibilities.... I knew you were the "one" early on in our relationship and i have never looked back.....Thank you for being such a tremendous father to our boys and and a wonderful husband...i love you and always look forward to our future.......

on a happy note

IN rereading some of the posts and comments i have received it dawned on me that I forgot to mention some of the most important attributes that Andrew embodies...these have absolutely nothing to do with his physical limitations..... Andrew is a bright, funny, inquisitive little boy with a belly laugh that is guaranteed to have you in stitches.....he loves to cuddle, play the drums on anything in front of him, and is obsessed with "yo gabba gabba, lol:)" He pulls his brothers hair, slaps him around, and has seen his fair share of finger four headlocks from his "older" brother.... they both respond to this torture with belly laughs and good humor..... He watches Jesse with fascination and cannot stay alone anywhere without him......I am TRULY blessed to have him and Jesse in my life and I know that I have learned more from Andrew in the past ten months about courage, patience, and unconditional love than i have gained in my lifetime:) I treasure the time I spend with them, even on the bad days when sleep has been limited and winter weather "house arrest" is mind blowing:) I know that with his condition things could have been a lot worse and I am grateful every day for him and the promise of watching him run around after (or from:) his big brother......I think that sometimes we focus too much on the negative, (which is certainly understandable and human nature:) and we have to remember to stay grounded in what we (or he) in this case can accomplish instead of how we are lacking......today is a hopeful day:)

Wednesday, August 19, 2009

shoe sharing

OK, so Andrew is already on his third pair of shoes..... The cost of each pair is about 100 dollars, i"m sure this varies and the insurance never got back to us about reimbursement, again, I"m sure that varies as well....not too optimistic though.... If anyone has shoes and bars that they would like to donate please let know and I would love to try and redistribute.... I currently have two smaller pairs. I believe the sizes he's grown out of are extra small, and small...I"ll have to get more specific on the sizes......for those of you that are grossed out by shoe sharing (hey it happens) I just want to emphasize that these kids wear the shoes for maybe two to three months before they grow out of them and always with socks....oh, BTW, for those of you with kids that wear these shoes, little tip....never get all cotton socks...they sweat in them...instead opt for at least 60 percent poly... we found that out the hard way:( poor kid kept waking up with wet feet;)

happy and sad

Jesse (Andrew's older brother by 2 minutes) is a week or so away from crawling....

Up until recently their milestones have been pretty equal.... it is now starting to really change....as Jesse starts to move around the floor, sit up from the lying down position, crawl etc....I am filled with joy and an almost weird sense of accomplishment....
sometimes though I look at Andrew and wonder when he will make these same strides....?
does he look at his brother and wonder why he isn't doing the same things....probably a silly thought but i can't help it sometimes......
morning all,

Andrew seems, in the last week to be experiencing a bit of a set back. He has always has sensory issues with his hands and feet and we work on that in physical therapy with "brushing" and massage. He had gotten to a point recently where he would get in the crawl position and keep himself up for a couple of minutes somewhat assisted in the legs area. all of a sudden he refuses to put his hands down on the ground...My PT Chris (whom I adore and cherish) says he's probably teething and therefore hypersensitive.....She says not to worry as usually and I will listen, but it's hard to see a setback when the progress seems so slow to begin with......

Tuesday, August 18, 2009

turning over

As expected Andrew has been delayed in some of his functions, like turning over, sitting up etc.....At nine months he was sitting up slightly assisted and we are pleased to say the as of last week he turned over for the first time:) not bad for a kid with limited leg muscles!

how it all started

Hello, My name is Mazra and I have 10month old twin boys Andrew and Jesse. The boys were breach for months and due (i believe) to his positioning Andrew has arthrogryposis. This is an umbrella term for a "stiffening of the joints." IN addition to the condition he was also born with severely clubbed feet and hip dysplasia. IN the last couple of months he has been through a pavic brace, serial casting for the feet, and a tonotomy (cutting of the Achilles tendon.) his feet are now aesthetically correct (thank g-d for my doc!) but he has absolutely no muscle tone in his legs and they cannot straighten at the knee. He has had physical therapy for months now and we are not really sure how his progress will be... (more casting? more surgery? braces? we have no idea when he will walk and how.... He also currently wears shoes and a special bar to sleep to keep his newly turned feet in place and will continue wearing them for at least another year. I have been through several pairs of very expensive shoes so far (which insurance does not help with) and would love to start a program for others, like a shoe exchange. anyway.... this is our story so far. I would love to hear form other mothers and fathers who are experiencing the same or similar.....