Until next time <3....
Wednesday, December 5, 2012
Early Intervention Assessment
As I type this Liam is sleeping peacefully in his crib. Liam's assessment went really well. Before they started they said he is automatically qualified due to his condition which doesn't surprise me, They loved Liam as suspected lol. There were 4 people who came to evaluate Liam. Well technically 3. About an hour before our appointment they asked if someone could join them to just watch the process. Basically someone learning how to do assessments especially with kids as little as Liam. I of coarse said yes. All they basically did was ask a bunch of questions, interacted with Liam to see how he interacted with them and tested some of his fine motor skills. So it was really fun for Liam. It was also fun for Andrew and I because we are excited to finally get things rolling along for Liam. They are all really nice and no surprise that they knew Emily (Liam's aunt) who has the same condition as Liam.
Until next time <3....
Until next time <3....
Saturday, December 1, 2012
A Difficult Post
Now I'm not the type of person to ask for help or money. I am the type of girl who says I'll do it myself no matter what it is. I don't even like asking my own husband for help. I am just that stubborn. If you are a mother or father you know the feeling of "I will do anything for my child". You would give your own life if you had to. You will put all uncomfortable feelings in a box if it meant helping your son or daughter. Well this is me fighting to put away my extremely uncomfortable feelings and fears away. This is me putting my "what are people going to think of me?" aside. I hate that I have to do this and I hate what people may think of me. But this is my son I am talking about. My pride and joy. My life. My all. My reason to live. You all know Liam can't move around. His hips make it hard for him to crawl. Liam can't explore at his own will. Liam can't even go play with other kids at his own will. We have to place him where we think he might like to be. It never occurred to me until now. Liam gets really fussy when we are home but if we are out and about he is as happy as can be. It just occurred to me that he might be bored. Think about yourself. Would you like to sit in one area for too long? Even with your toys (computer, cellphone, xbox) you would eventually get bored and go do something else. Now think of kids, they are always on the go. Getting into any and everything they can. They learn, they explore. You rarely see a baby who can crawl or walk sit still for very long. Their attention spand just isn't that long. They want to know everything, feel everything and even taste everything lol. Liam often seems frustrated with life at home. We can give him books and toys up the wazoo. We can place him in his bouncer, saucer and on his playmat but yet gets upset so soon after he is placed in an new area. I see it in his eyes and I feel it in my heart that Liam wants to move around and explore. We try and work with him to try and teach him how to crawl and even scoot. We haven't had success yet. I am hoping that one day he will get the hang of it and I'm sure he will. Liam HATES being on his stomach. He doesn't last more than 5 minutes on his stomach whether it's the frustration of not being able to move, or if it really does bother his joints or if he just plain out doesn't like it. If Liam is on his stomach you can see him try and move his legs forward to crawl but can't move them enough. He can only get them forward like an inch or so. His right leg is stronger and to be honest I've never really seen him move his left leg forward.
Now you maybe asking me why I am writing this, well I'm going to tell you lol. I hate to do this but if it helps my son out I am willing to put all my fears aside and do it. If I'm judged then so be it. If it's weird who cares, all I care about is getting my son the mobility he deserves and wants. If you are able to we ask that you please help donate to get Liam a ZipZac (you can click the the name to see what it is or look at the picture to the left). I would never have done this but a dear friend of ours (Thank you Jenny) surprised us by setting up a campaign to raise money to get Liam a ZipZac. Someone asked if Early Intervention would get Liam one. That is up in the air. I can't remember who pointed this out to us but the ZipZac is not coded yet(they are working on getting it coded) so insurance companies definitely won't help with the costs and it might be hard to get the health department to help with the costs as well. Plus if we raise enough money to buy Liam one Early Intervention can save that money to help another family out who might not be as lucky as we are to have so many amazing friends and family. So this is us asking our friends and family to help get Liam mobile. If this is something you would like to do you can head over HERE to donate. Again I HATE asking for help but would love any help we can get. Liam is our pride and joy and with all he has been through this year he deserves something awesome to happen to him besides having awesome parents lol j/k.
I just want to thank everyone for their support this year. It has been a tough one but has been more bearable with all of you guys. Thank you so much for your love and support.
And thank you Jenny for being so kind to set up the campaign for Liam!
http://www.indiegogo.com/zipzacforliam
 |
| Photo taken from ZipZac facebook page. |
I just want to thank everyone for their support this year. It has been a tough one but has been more bearable with all of you guys. Thank you so much for your love and support.
And thank you Jenny for being so kind to set up the campaign for Liam!
http://www.indiegogo.com/zipzacforliam
Wednesday, November 28, 2012
11 Months Old
***** ALL MY PRAYER WARRIORS *****
I entered Liam into ZipZac (basically a wheelchair for a baby) so he can start moving around at his own will. They finally reached 2000 likes so please pray hard that Liam is picked to receive a free ZipZac. Thank you
I can't believe Liam is finally 11 months old. Only one more month until Liam is a year old. Man time just flies by so quickly. I am working on a pretty detailed post for his 1 year post so I'm not going to post too much about him being 11 months lol.
Lately I've been feeling kind of blah. Well yesterday I found out why. My thyroid was off and they had to up my dose on my meds to bring them back to the levels they need to be.
Symptoms of hypothyroidism
I now know why I have been feeling so blah lately. I can't wait til my levels are good again so I can start feeling like a human being again lol. I remember how well I felt last year after my levels were finally at the right level. It was an amazing feeling lol.
I was browsing Facebook tonight and came across a post my friend wrote. I read it and loved it. Here is what I read. It is truly beautiful.
"For all the special needs moms out there ♥
Thoughts of a Mom
By Maureen K. Higgins
Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores. I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culle...
Thoughts of a Mom
By Maureen K. Higgins
Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores. I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culle...
d with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist’s offices and NICU units, in obstetrician’ s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well-meaning strangers.
We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.
We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.
We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist’s offices and NICU units, in obstetrician’ s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well-meaning strangers.
We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.
We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.
We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars."
Saturday, November 24, 2012
Thanksgiving #2 and Dreams
With being in the car for 2 hours heading towards Albany I decided I had some time to kill so here I am again writing. I would of never thought in a million years I would be writing so much. But here I am.
Since I've been with Andrew I have celebrated Thanksgiving with his family in Albany. Normally we celebrate it on Thanksgiving Day but this year it was better to celebrate it on this day (11/24). This I am ok with since I felt like I was hit by a bus on Thanksgiving Day. My bottom right wisdom tooth decided it wanted to make it's presence earlier this week. Ibuprofen didn't seem to help so I took the pain meds my dentist gave me on Tuesday and that seemed to help and helped with sleeping too lol. So on Wednesday night I took the ones from my c-section and wow did it screw me up Thursday morning. My head hurt so bad to the point where I was dizzy, throwing up and had the shakes. Yep those pills went in the garbage. So needless to say I am glad we are going to Albany today.
Some hopes and dreams I have. Now before I start I know they won't happen and the dreams are a little to big at the moment but hey a girl can dream right? For months now I have envisioned Liam being able to play with kids at his birthday party all by himself. For obvious reasons that can't happen. Now this is just a dream lol but I was hoping Liam would be able to soley play with the other kids via the zipzac. Now that can't happen because it's to late in the year and we are most likely having his party January 5th. Now I can see some people saying why can't it happen? Well I'll tell you why lol. 1. Simply because we dont have the money. Liam would need the bigger zipzac (called the zipzac II ) and that costs about $1,100-$1,200 plus shipping. 2. We are still waiting on Early Intervention and sometimes they can help get them. Liam still hasn't had his assessment to get approved for E.I. We don't even have a date set yet either. Even if he gets approved for E.I and they do get him a zipzac it'll probably be too close to his b-day party to pick up how to use it. But like I said its just dreams lol.
On a side note Liams New favorite way to sleep is on his side. This wouldn't normally be a problem but since Liam's hips are dislocated his leg really dangles. Liam wakes up more now (crying ) since laying on his side. I think his leg dangling bothers his joints causing discomfort. Now I must find a way to safely keep him from rolling up on his side. Until next time.... <3
Thursday, November 22, 2012
Happy Thanksgiving.
As I sit here with a nuclear headache that makes me throw up I can't help but be thankful for all the support we have had these past 11 months. As you all know Liam was born with some lower extremity issues which knocked us both off our feet for a little while. But with all of the support and love we received from all of you we were able to get back up on our feet again. God truly blessed us with amazing friends and family. I honestly don't know how people can get through traumatic situations without friends and family like you guys. We are finally getting the hang of things which makes everything a little easier to bare. And as you all know Liam is doing amazing.
So thank you everyone for your awesome love and support you have shown towards us these past 11 months. We couldn't of done it without you and we are so thankful for you.
So thank you everyone for your awesome love and support you have shown towards us these past 11 months. We couldn't of done it without you and we are so thankful for you.
Tuesday, November 20, 2012
Liams First Haircut
Still no update about early intervention. Last week was a short week and so is this week so we might not here from them until week.
So Liam finally had his first haircut today. I was going to get it on video but was too embarrassed to do so lol oh well. It's nothing crazy just a trimming to control the craziness. So what do you think.....cute right lol. Thank you Pauline :D <3
So Liam finally had his first haircut today. I was going to get it on video but was too embarrassed to do so lol oh well. It's nothing crazy just a trimming to control the craziness. So what do you think.....cute right lol. Thank you Pauline :D <3
 |
| Remeber this crazy hair? I still love it! Now we are all cleaned up :) |
I also got bored today so I decided to draw converse shoes on Liams casts. It was a pain because Liam is a wiggle worm but it was well worth it .
Until next time <3
Monday, November 19, 2012
In Casts Again
Liam went back to his orthopedist today to have his ankles looked at again after being out of casts for 3 weeks and Liam is now back in casts. This time they are only knee length. As Dr. Albanese was stretching his ankles I was amazed again lol. Andrew and I aren't quite as daring as Dr. Albanese is with the stretching. We don't stretch him like he does. It definitely hurt Liam because the stretch was so much more than we do. It's crazy how much further his ankles really goes compared to the stretch we do. Right below is the stretch we do and it may not seem like a big stretch because its not. I wish I had gotten Dr. Albanese stretching him on video just so you can see how far it really goes. Dr. Albanese says our stretch is ok to make sure we don't do damage or break his ankles so that was a relief lol.
Dr. Albaneses stretch goes a little further than that. You know when you flex your ankle and your toes start to point in the air? Liam's toes does that a little too :D
So in 2 weeks we got back and Liam may come back out with another set of casts. Dr. Albanese doesn't want to digress with his ankles because they are so good now compared to before his surgery. Liam is doing ok now. He is a little sore when he is in the up right position with his legs dangling. I think the weight of the casts might bother his ankles due to the intense stretch they are in. If he is sitting or laying down he is ok. I'm sure in a day he won't even know they are there. Well that is unless he see them lol. On the way home he was hitting them like he did his bare legs 3 weeks ago, It's just too funny.
Well until next time <3
He's feet finally runs horizontal with the floors:D
Subscribe to:
Posts (Atom)
