The thoughts that go through your head when you are faced with the unknown... When we left the hospital with Willem in July of 2005 all we knew is that the doctors did not know what was wrong with him BUT that there was something wrong!!!
I knew that i loved him!! I never doubted that... I did doubt God a bit and my mom would say that i should believe in him all the more! I questioned everything i have ever done in my life to have a child that was not "right." I cried all the time... in the beginning I know that it was hormones for sure but also a fear of the unknown and all the possibilities that could be "wrong" with him!
I remember crying that we would never be able to go on vacation again ~ or go as a family to Disney World which in hind site is quite funny to me because i am so not a Disney kind of girl... and it was all so unrealistic! ** He is 2 and has been to Florida twice (not Disney, the boys are too young) Illinois twice, Buffalo more times than i can count!! We make trips to New York City he loves the American Museum of Natural History and the Dinosaurs! There is nothing that he cannot do and i know and believe that now but we were so scared in the beginning with the unknown splashed in our faces!! Now just going to the play ground is so wonderful for so long he sat and watched and soon after he scooted around and went were ever I placed him!! AND now to see him be his own person is such a thrill!
I also remember last summer he had turned 2 and after a Yoga class of mine just crying so hard thinking how could i have a child that cannot walk? I have all of this strength and control over my body and he cannot stand up straight long enough to just walk!!!
BUT he has gotten it and I am so proud of him!!
Today we were playing with his cousins Stella and Rocco and Ben was there too and Willem was playing with them but then you'd see him have to stop and watch them run right past, as he is unable to keep up 100 percent. But he so wants to be a part of them... cognitively he is there with them, physically he is getting there and i am just so happy for him!!
Friday, March 28, 2008
Wednesday, March 26, 2008
Physically and his Physical Therapy.
Here is a bit about the rest of Willem, the part that is not directly affected by his syndrome. Yet is, in the sense that he has been and still is "behind" in his motor skills and strength in general! At 3 weeks old he started his Physical Therapy and has had it ever since. I remember how naive I was in the beginning to the point of telling our therapist "you know i am a dancer and can do all of my splits and hold my leg up to my ear are you sure he isn't just flexible." Mind you he did not bear any weight in his legs until ~ I don't know really consistently past a year! Then she paid Willem a complement and again i remember saying so do you think we are done then with this physical therapy ~ he wasn't even 6 months and really not even sitting up on his own yet. (Ben was crawling at 6months) So naive i was...
For Willem's first year which was with the above therapist we went to a private therapist and she worked on strengthening his muscles. We used the big therapy ball... we played with lots of different toys to get him to push different buttons which in turn were making him stronger!
BUT I never felt a real connection with her and i always thought she thought i was a stupid young mom. Yet i know that i never missed sessions and was into it 110% ~ So i did not like the feeling that she did not like me BUT more importantly I NEVER felt like she cared to know
Willem's syndrome.
So at a year old August 4 I believe was the exact day... we were interviewed to see if Willem was eligible for Early Intervention. (Early Intervention is a state run program for children with special needs that runs until you are 3. The therapists come to your home and do there therapy with you the parent or guardian present so that you can incorporate it into your every day life! Amazingly the Therapists that Willem got are AMAZING!!!! Plus we did not have to drive our 35 minutes each way as we had to, to go to the private therapist. Plus, Ben is home with us. As i had to put him in child care when Willem was in the private therapy!)
He was, and that was an amazing step in Willem's little life!
At the time 1 year old. Willem was sitting up on his own, was using his arms some to push his chest off the ground,and would roll to get where he wanted to go! Physically that was about it!!
Again at such a young age it was the same strengthening and playing with toys obviously what will be of interest to him! BUT it was twice a week for an hour. Most importantly our therapist cared, cares to know as much about Willem and his syndrome as possible! Which i find amazing ~ She has been a P.T for over 25 years and still goes to workshops to see what is new to add to her treatments. In the beginning with our P.T. we worked a lot with Willem to get him to crawl, but one of the hardest things was to get him to get his head up while he was crawling. As well as holding his weight in his arms, he would belly out a lot. On Oct. 13 of 2006 Willem pulled himself up to stand for the first time, it did not become consist for a few months more but there was celebration here when he achieved that. In January of 2007 he started scooting on his butt to get where he wanted something we were initially hoping would not happen because that often delays crawling and walking simply because you don't need to if you can get were you want to scooting on your bum!! He wore holes right through the bottoms of his pants!!! Also in January Willem was fitted for orthotics for his feet. Here they are.
So he would be able to stabilize his ankle and give him the support he needed to be able to stand on his own and walk!! They did help, but No instant miracles!
Photo of Willem scooting through the strawberry fields... you can imagine what those pants looked like!!!! 6/2007
With assistance he soon was standing on his legs but was not walking!! It was not until August of 2007 he was 2 years and one month that he stood up off a low couch and took 4 steps to get to his train table. Again it took a couple months to make those steps consistent.
9/2007 walking outside with hand held and needed that hand!!!
There has always been the question in our minds could some of the delay be visual as well. Possibly a depth perception thing?!? His glasses do seem to help. By 2 1/2 January 2008 Willem's main form of locomotion was walking . In the outside world it was a bit harder but with a hand held he was getting where he needed to go. Now in March of 2008 he is doing a pretty good job of getting around even out side. BUT i need to be very close by as he still wipes out ~ thankfully not as often but I would say about a dozen times a day! THEN there are the STAIRS.... To this day he is VERY stubborn on the stairs!! NOW, he can do them but I often say he gets lazy and just waits for me to carry him ~ again we question if it is due in part to his vision?? In the past couple months he has figured out how to crawl up them and with assistance walks up them while holding a railing. Getting down he still needs 100 percent assistance but he is getting there, every day he gets stronger! Just this past week, the last week of March, he has discovered that he can run!!! It is a bit clumsy and not very fast but he is very proud of himself as we are!!!
In short... in the past 2 1/2 years he has come a long way!! It has taken longer than most but he is finding his coordination and strenght slowly but surly and once he has it he can only get stronger.
For Willem's first year which was with the above therapist we went to a private therapist and she worked on strengthening his muscles. We used the big therapy ball... we played with lots of different toys to get him to push different buttons which in turn were making him stronger!
BUT I never felt a real connection with her and i always thought she thought i was a stupid young mom. Yet i know that i never missed sessions and was into it 110% ~ So i did not like the feeling that she did not like me BUT more importantly I NEVER felt like she cared to know
Willem's syndrome.
So at a year old August 4 I believe was the exact day... we were interviewed to see if Willem was eligible for Early Intervention. (Early Intervention is a state run program for children with special needs that runs until you are 3. The therapists come to your home and do there therapy with you the parent or guardian present so that you can incorporate it into your every day life! Amazingly the Therapists that Willem got are AMAZING!!!! Plus we did not have to drive our 35 minutes each way as we had to, to go to the private therapist. Plus, Ben is home with us. As i had to put him in child care when Willem was in the private therapy!)
He was, and that was an amazing step in Willem's little life!
At the time 1 year old. Willem was sitting up on his own, was using his arms some to push his chest off the ground,and would roll to get where he wanted to go! Physically that was about it!!
Again at such a young age it was the same strengthening and playing with toys obviously what will be of interest to him! BUT it was twice a week for an hour. Most importantly our therapist cared, cares to know as much about Willem and his syndrome as possible! Which i find amazing ~ She has been a P.T for over 25 years and still goes to workshops to see what is new to add to her treatments. In the beginning with our P.T. we worked a lot with Willem to get him to crawl, but one of the hardest things was to get him to get his head up while he was crawling. As well as holding his weight in his arms, he would belly out a lot. On Oct. 13 of 2006 Willem pulled himself up to stand for the first time, it did not become consist for a few months more but there was celebration here when he achieved that. In January of 2007 he started scooting on his butt to get where he wanted something we were initially hoping would not happen because that often delays crawling and walking simply because you don't need to if you can get were you want to scooting on your bum!! He wore holes right through the bottoms of his pants!!! Also in January Willem was fitted for orthotics for his feet. Here they are.
So he would be able to stabilize his ankle and give him the support he needed to be able to stand on his own and walk!! They did help, but No instant miracles!
Photo of Willem scooting through the strawberry fields... you can imagine what those pants looked like!!!! 6/2007With assistance he soon was standing on his legs but was not walking!! It was not until August of 2007 he was 2 years and one month that he stood up off a low couch and took 4 steps to get to his train table. Again it took a couple months to make those steps consistent.
9/2007 walking outside with hand held and needed that hand!!!
There has always been the question in our minds could some of the delay be visual as well. Possibly a depth perception thing?!? His glasses do seem to help. By 2 1/2 January 2008 Willem's main form of locomotion was walking . In the outside world it was a bit harder but with a hand held he was getting where he needed to go. Now in March of 2008 he is doing a pretty good job of getting around even out side. BUT i need to be very close by as he still wipes out ~ thankfully not as often but I would say about a dozen times a day! THEN there are the STAIRS.... To this day he is VERY stubborn on the stairs!! NOW, he can do them but I often say he gets lazy and just waits for me to carry him ~ again we question if it is due in part to his vision?? In the past couple months he has figured out how to crawl up them and with assistance walks up them while holding a railing. Getting down he still needs 100 percent assistance but he is getting there, every day he gets stronger! Just this past week, the last week of March, he has discovered that he can run!!! It is a bit clumsy and not very fast but he is very proud of himself as we are!!!
In short... in the past 2 1/2 years he has come a long way!! It has taken longer than most but he is finding his coordination and strenght slowly but surly and once he has it he can only get stronger.
Sunday, March 16, 2008
No Smile...
Willem this past friday!!
The story of Willem's lack of smile is that again he doesn't have the cranial nerve to make his mouth move. So he can't purse his lips together to suck out of a straw. (he compensates with his tongue) For awhile I was distraught with the fact that he would not be able to kiss, really cried about that one BUT (he compensates by closing his lips and making a smacking sound ~ which makes my heart sing) In reality he physically cannot pucker up for those things but he is so amazingly smart at the ripe old age of 2 1/2 that he is finding ways to work around it!!!
Gosh i love this kid!!
Unfortunately the fact is he cannot smile or for that matter frown. He does not have the natural ability to just have his mouth closed so he drools a lot. He has difficulty in the clarity of his speech mainly with words starting with P,M, and B as you need closed lips to make those sounds. With our AMAZING speech therapist we are working on prompts to help him close his lips so he can be understood! He compensates by moving his Jaw so that he can get his lips closed.
I have also been introduced to the fact that he has paresis and not paralysis as he does have minimal movement in his face and he does have feeling. I know i have said dozens of times he cannot smile BUT if you look really closely you can see the slightest movement on the right side of his face when you know that if he could, he would be smiling. He also has feeling on his face we use a vibrating toy as part of his facial work and he will tell me that it tickles and he can feel when he has drool on his chin.
Part of Willem's speech therapy is to do lots for facial massage. In hopes that since he is not able to use his upper lip regularly atrophy will not set in! Let me tell you we both love that, every night I do his tapping (the massage starts with me tapping then stretching and rubbing his sweet little face!)
On the same note as not smiling when he cries his face does not move no scrunching up of the eyes and the forehead..no sour puss of a face. I can recall back in the beginning one of his therapist saying "that is not a real cry... look at his face!! "
Gosh i love this kid!!
Unfortunately the fact is he cannot smile or for that matter frown. He does not have the natural ability to just have his mouth closed so he drools a lot. He has difficulty in the clarity of his speech mainly with words starting with P,M, and B as you need closed lips to make those sounds. With our AMAZING speech therapist we are working on prompts to help him close his lips so he can be understood! He compensates by moving his Jaw so that he can get his lips closed.
I have also been introduced to the fact that he has paresis and not paralysis as he does have minimal movement in his face and he does have feeling. I know i have said dozens of times he cannot smile BUT if you look really closely you can see the slightest movement on the right side of his face when you know that if he could, he would be smiling. He also has feeling on his face we use a vibrating toy as part of his facial work and he will tell me that it tickles and he can feel when he has drool on his chin.
Part of Willem's speech therapy is to do lots for facial massage. In hopes that since he is not able to use his upper lip regularly atrophy will not set in! Let me tell you we both love that, every night I do his tapping (the massage starts with me tapping then stretching and rubbing his sweet little face!)
On the same note as not smiling when he cries his face does not move no scrunching up of the eyes and the forehead..no sour puss of a face. I can recall back in the beginning one of his therapist saying "that is not a real cry... look at his face!! "
I realize that I am completely focusing my writing on Willem but Benjamin has been here for all of this as well!! And I can so clearly hear his little voice as we had a friend over for dinner and yes we were talking about Will and just our lives in general and Ben said "Well you know Willem will never be able to smile, Because God made him special."
Yes my heart skipped a beat at that moment in time!
For now... good night!
For now... good night!
Saturday, March 15, 2008
Willem's eyes.
Now that i have established that we figured out the mystery of Willem i am a bit stumped as to how i begin all that i want to share with you about this very special little guy. I suppose one step at a time and so here is the story of his eyes!!
When Willem was an infant he gave the impression that he was not focusing on objects! His eyes kind of floated around, not like a lazy eye but also not a steady stare. Plus when he would be in a bright light he would roll his eyes up in his head. One of the things that was part of his diagnosis is that he also has no outward lateral eye movement(almost always present in moebius syndrome). As an infant I remember trying to get him to track a toy with his eyes when he would he would move his entire head to fallow the pattern. Actually I think he still does, i will have to try that tomorrow with him! As he got older and he did appear to be focusing steadier his crossed eye's became more obvious.
I remember being very happy when we realized for sure that he could see... there was not much doubt but with his face not changing expression and his eyes not showing a focus there was a question! I don't remember the "ah ha" moment but I do remember us asking each other "is he seeing us? he has to be right? " And he sure does see, he will now pick up the tiniest crumb and say "here mom"!
As for the rolling of the eyes in the sun as an infant we discovered it was because he could not squint. I would keep his face covered keeping him in the shade or in a covered carriage or with a hat and i tried all sorts of sunglasses ~ he would not keep on the type that wrapped around his head. Since then i have found the greatest sunglasses he wore all last summer and since as even though the weather is freezing here it can still be sunny. The glasses are by JULBO ~ looping sunglasses . What i love about them is that they are symmetrical so he can take them on and off and they are never upside down. They are very dark so they actually work. He can't pinch his fingers in them because they don't close. They are almost undestroyable as Willem has pulled at them many a time. BUT i did step on them once, that did cause the lenses to pop out BUT i actually was able to push it back in. I did buy a new pair at that time for back up though because we really can't be without them. When we are out everyone calls him a rock star so yes they are even cool looking!!
We have seen a few different eye doctors which all gave us different plans of treatment. But they all agreed that his eyes were not being scratched from his inability to squint, or do a complete blink. I believe that is because as i mentioned earlier he does sleep with his eyes closed and he does produce tears. As he has gotten older there have been times when he says his eyes hurt and i do give him moisture drops. As well as when the heat is on high or the air conditioning i do put Lacrilube(eye ointment) in his eyes at night just to be sure he is comfortable as he doesn't really fight it, I think that it is helpful!
As for his strabismus (crossed eyes) there were doctors that told us to wait until he is 8 years old and then the Dr. we went with was concerned with amblyopia setting in when one of his eyes would stop seeing if it was not being used. So we started patching his eyes for a while one at a time so that the unpatched would get stronger he was not crazy about keeping it on. We would have good and bad days, in the end on April 18th of 2007 (21 months old) Willem had the strabismus surgery to straighten his eyes. After the surgery the doctor said it was
tighter in there than he had anticipated but that all went well. After the surgery about a month or so Willem would say his eye hurt and cover it. Upon seeing the Dr. we discovered it was not a physical pain but one of discomfort as to how his eyes were focusing. So he prescribed the patching again which we did and he loved having it on.(my Que that it was working!) After a few months of that we weened him of the time he was patched. The crossed eyes still being present not as bad but enough for concern in Oct. of 2007 the Dr. speaks to us of needing to go in for more surgery. I ask about glasses, he saying 2 year olds generally don't keep them on for this but we tried and he keeps them on! They are prism glasses so they are not correcting his vision but giving the illusion of how things are placed in space by how the light hits them. Again they are not correcting the strabismus but they are keeping his eyes working together! Unfortunately in January of 2008 even with him keeping the glasses on he wants to try to straighten them further I think maybe we should get a second opinion, if he doesn't have the cranial nerve there working will the surgery ever work????
That is the story of Willem's eyes up to date. They are also a wonderful hazel color like his dads and even though he cannot smile people say " oh i can see he is happy in his eyes!!" And now that he is older it is also in his great laughter which I must say in contagious!!
When Willem was an infant he gave the impression that he was not focusing on objects! His eyes kind of floated around, not like a lazy eye but also not a steady stare. Plus when he would be in a bright light he would roll his eyes up in his head. One of the things that was part of his diagnosis is that he also has no outward lateral eye movement(almost always present in moebius syndrome). As an infant I remember trying to get him to track a toy with his eyes when he would he would move his entire head to fallow the pattern. Actually I think he still does, i will have to try that tomorrow with him! As he got older and he did appear to be focusing steadier his crossed eye's became more obvious.
I remember being very happy when we realized for sure that he could see... there was not much doubt but with his face not changing expression and his eyes not showing a focus there was a question! I don't remember the "ah ha" moment but I do remember us asking each other "is he seeing us? he has to be right? " And he sure does see, he will now pick up the tiniest crumb and say "here mom"!
As for the rolling of the eyes in the sun as an infant we discovered it was because he could not squint. I would keep his face covered keeping him in the shade or in a covered carriage or with a hat and i tried all sorts of sunglasses ~ he would not keep on the type that wrapped around his head. Since then i have found the greatest sunglasses he wore all last summer and since as even though the weather is freezing here it can still be sunny. The glasses are by JULBO ~ looping sunglasses . What i love about them is that they are symmetrical so he can take them on and off and they are never upside down. They are very dark so they actually work. He can't pinch his fingers in them because they don't close. They are almost undestroyable as Willem has pulled at them many a time. BUT i did step on them once, that did cause the lenses to pop out BUT i actually was able to push it back in. I did buy a new pair at that time for back up though because we really can't be without them. When we are out everyone calls him a rock star so yes they are even cool looking!!
We have seen a few different eye doctors which all gave us different plans of treatment. But they all agreed that his eyes were not being scratched from his inability to squint, or do a complete blink. I believe that is because as i mentioned earlier he does sleep with his eyes closed and he does produce tears. As he has gotten older there have been times when he says his eyes hurt and i do give him moisture drops. As well as when the heat is on high or the air conditioning i do put Lacrilube(eye ointment) in his eyes at night just to be sure he is comfortable as he doesn't really fight it, I think that it is helpful!
As for his strabismus (crossed eyes) there were doctors that told us to wait until he is 8 years old and then the Dr. we went with was concerned with amblyopia setting in when one of his eyes would stop seeing if it was not being used. So we started patching his eyes for a while one at a time so that the unpatched would get stronger he was not crazy about keeping it on. We would have good and bad days, in the end on April 18th of 2007 (21 months old) Willem had the strabismus surgery to straighten his eyes. After the surgery the doctor said it was
tighter in there than he had anticipated but that all went well. After the surgery about a month or so Willem would say his eye hurt and cover it. Upon seeing the Dr. we discovered it was not a physical pain but one of discomfort as to how his eyes were focusing. So he prescribed the patching again which we did and he loved having it on.(my Que that it was working!) After a few months of that we weened him of the time he was patched. The crossed eyes still being present not as bad but enough for concern in Oct. of 2007 the Dr. speaks to us of needing to go in for more surgery. I ask about glasses, he saying 2 year olds generally don't keep them on for this but we tried and he keeps them on! They are prism glasses so they are not correcting his vision but giving the illusion of how things are placed in space by how the light hits them. Again they are not correcting the strabismus but they are keeping his eyes working together! Unfortunately in January of 2008 even with him keeping the glasses on he wants to try to straighten them further I think maybe we should get a second opinion, if he doesn't have the cranial nerve there working will the surgery ever work????That is the story of Willem's eyes up to date. They are also a wonderful hazel color like his dads and even though he cannot smile people say " oh i can see he is happy in his eyes!!" And now that he is older it is also in his great laughter which I must say in contagious!!
Friday, March 14, 2008
it has been too long... more of willems story!
WILLEM AT SIX MONTHS OLDSorry it has taken so long to add more to our story... BUT i am back!!!
SO... We did find a great neurologist at Columbia University in N.Y.C who we saw when Willem was almost 5 months old and what a great find that was!!!
I told her our story as listed in the earlier entries and that Will was on the phenobarbital and that we thought it may be Moebius Syndrome and she gave Willem a good looking over then excused herself for a few moments and came back with a text book open to Moebius Syndrome! And we looked at the photos and saw how similar Willem looked to the other baby's not only his facial expression but what I call his "loosey goosey" ness!!!! That his muscles tone was so poor, that this legs just flopped opened, wasn't putting any weight in his legs, wasn't pushing up at all during tummy time just did not have the strength. SO, we left with a clinical diagnosis of Moebius Syndrome and a prescription to have another MRI and a in hospital EEG performed. Since Moebius is so rare there is not a blood test you can do or really any test to get a definite diagnosis so that is why his is only clinical!
In the next month we did the MRI which did not show much in the way of the cranial nerves ~ don't quote me but i am under the impression that it is almost impossible to see the cranial nerves even if he wasn't such a little guy. What they did see is that his brain looked normal and intact! Then we went for the EEG which we were scheduled to be monitored for 24 hours but nothing happened in the first 24 hours so we stayed on for another 24 at which point we were given the o.k. that he was not having any seizure-like activity and that we could begin to ween him off the Drugs!!!!! YEAH!!
MYSTERY SOLVED!!!!!!
So by 6 months we with our doctors decided that indeed what Willem has is Moebius Syndrome. He is very blessed how uninvolved his case is as he has all his fingers and toes which are sometimes missing in other people with this syndrome. And far more important than that is that he did figure out how to nurse even without the shield! And at about nine months was handling solid baby foods (applesauce, rice cereal, pureed foods) with out any big problems! Yes, there were the small ones with him pushing the food out. It was more to do with the fact that his tongue was not yet trained to eat but with some help from our speech therapist he really progressed very quickly!! And the challenge of getting him to drink out of a sippy cup when he was ready for water and juice around the same time. We found that the Nubby brand "bottle like" cups worked for him and later the Playtex sippy cup with the soft spout worked. As he cannot close his lips without "outside help" he uses his tongue to do the sucking. Another part of our therapy was to get Willem to drink out of straw for both practical and therapeutic reasons and on May 4th of 2007 (21 1/2 months old) he did on his own drink 3.1 oz. of a drinkable yogurt!! (You would think he had won the N.Y.C. marathon with the excitement with which i called all of our family) Since then and in time he now also uses a straw sippy cup!!! Yet to this day if he is too tired he will say i can't do it and start crying. It is easiest with a short straw so I cut the bottoms off his straws when not in a sippy cup.
Plus, he sleeps with his eyes closed!!! I will talk about his eyes in my next entry... hopefully i will get to it this weekend as i am back on track! Thanks for listening... Leslie
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