Thursday, October 28, 2010
Thankful
I was driving home by myself the other day (which actually gives me time to think for once) and was thinking how thankful I am for everything I have. When Jacob was born, he was so sick that I started preparing myself for the worst and I didn't let myself get attached to him immediately like I did with my other 2. I emotionally tried to keep my distance from him, but of course over the next 3 weeks, I couldn't help but fall in love with my baby. I cried alot and prayed alot during those weeks and I remember really putting my faith into God at that time to help me through everything. As a matter of fact I don't think I have ever been more at peace with God than I was at that time. I knew He would get me through whatever I had to face. When I think back about all that, it makes me realize that I really need to refocus on my faith and count my blessings. Even in the lowest points in our lives, we still have so much to be thankful for!
Monday, October 18, 2010
Updates and Feelings
Sorry I haven't posted for awhile. Jacob has been sick for the last few weeks with a respiratory infection again. It was pretty bad last week and I thought about taking him in, but I knew the doctor would send us home with instructions to do breathing treatments every 3 hours, so that's what we did instead of wasting $20.00 to hear what we already knew. Anyhow, he is doing alot better now, still wheezy, but better. We don't have any improvements in large motor skills. He was supposed to go to PT today, but we got cancelled on, which frustrates me since he hasn't been in 3 weeks and doesn't have another appointment for 4 more weeks. He is behind the most in Large motor skill and we can't seem to get anything going to improve that. For all of you who like statistics and comparisons, I will give you his Peabody evaluation numbers from his initial therapy session a few weeks ago: Stationary score is 9 months (which is what he can do in a stationary position, like sitting)
Locomotion: 7 months (this is his large motor skills that have to do with moving, standing, etc.)
Grasping: 14 months
Visual motor integration: 11 months
Jacob is 16.5 months old, so you have a comparison of where he is at...Obviously we have a lot of work to do in the Locomotion, which is the one I can't get him an appointment in! Anyhow, that's where we are with therapy. On a better note, our OT/Eating therapist has been doing great so far on improving his table food skills.
Changing subjects again, my mother-in-law pointed me towards a blog about a little girl named Camille that has been going through a really hard time since birth and they are still looking for answers as to what is causing all of her health problems. It sounds like a genetic disorder, but they aren't having any luck finding anything in any of the tests. Her health seems to be taking turns for the worst. Alot of her health problems were similar to Jacobs, but over time hers have gotten alot worse and more in depth. I am praying for that family and reflecting on how thankful I am for what I have.
One more subject change...My friends Carrie has offered to help me get a 5k fundraiser going and our goal right now is to shoot for May so be looking out for updates on that! Plus I want to say a big thanks to Carrie for helping me out so much with the kiddos so I can take Jacob to all of his stuff and being so supportive. I am thankful to have such great people in our lives!
Locomotion: 7 months (this is his large motor skills that have to do with moving, standing, etc.)
Grasping: 14 months
Visual motor integration: 11 months
Jacob is 16.5 months old, so you have a comparison of where he is at...Obviously we have a lot of work to do in the Locomotion, which is the one I can't get him an appointment in! Anyhow, that's where we are with therapy. On a better note, our OT/Eating therapist has been doing great so far on improving his table food skills.
Changing subjects again, my mother-in-law pointed me towards a blog about a little girl named Camille that has been going through a really hard time since birth and they are still looking for answers as to what is causing all of her health problems. It sounds like a genetic disorder, but they aren't having any luck finding anything in any of the tests. Her health seems to be taking turns for the worst. Alot of her health problems were similar to Jacobs, but over time hers have gotten alot worse and more in depth. I am praying for that family and reflecting on how thankful I am for what I have.
One more subject change...My friends Carrie has offered to help me get a 5k fundraiser going and our goal right now is to shoot for May so be looking out for updates on that! Plus I want to say a big thanks to Carrie for helping me out so much with the kiddos so I can take Jacob to all of his stuff and being so supportive. I am thankful to have such great people in our lives!
Tuesday, October 5, 2010
A Little Bit about the rest of us
Everyone knows Jacob by now, but it's probably a good idea to tell you about his family so you have an idea of our family dynamics and our life in general.
I have 2 other children besides Jacob. Alexis just turned 6 and Aiden is 3. I stay at home with them, but as of March of this year started working for one of my husband's friends from home part time. Alexis goes to half day kindergarten (thanks goodness :) ) and I am pretty sure I signed her (and me apparently) up for way to many activities this Fall so we are going non stop to practices, games and meetings. Aiden is not in preschool yet, but we may look into that in January since he has ALOT of energy that I am having trouble controlling lately. Jacob is 16 months and loves his borther and sister. They make him laugh more than anyone else! My husband, Ben is a full time firefighter for the City of Merriam and has a part time job at Burns and McDonnell as well that doesn't allow him to be home very often. He is also working on his Masters, so he is a very busy person! Our goal is for him to be able to quit his second job by July of next year otherwise he and I might go insane! So, there it is. I am trying to balance 3 kids, one with special needs, a part time job and all the extracurriculars mostly by myself and Ben is working his butt of to make ends meet...but in return I have 3 beautiful children, an awesome husband, and a pretty great marriage, so what else could you ask for?
I have 2 other children besides Jacob. Alexis just turned 6 and Aiden is 3. I stay at home with them, but as of March of this year started working for one of my husband's friends from home part time. Alexis goes to half day kindergarten (thanks goodness :) ) and I am pretty sure I signed her (and me apparently) up for way to many activities this Fall so we are going non stop to practices, games and meetings. Aiden is not in preschool yet, but we may look into that in January since he has ALOT of energy that I am having trouble controlling lately. Jacob is 16 months and loves his borther and sister. They make him laugh more than anyone else! My husband, Ben is a full time firefighter for the City of Merriam and has a part time job at Burns and McDonnell as well that doesn't allow him to be home very often. He is also working on his Masters, so he is a very busy person! Our goal is for him to be able to quit his second job by July of next year otherwise he and I might go insane! So, there it is. I am trying to balance 3 kids, one with special needs, a part time job and all the extracurriculars mostly by myself and Ben is working his butt of to make ends meet...but in return I have 3 beautiful children, an awesome husband, and a pretty great marriage, so what else could you ask for?
Lots of things on my mind..
There are lot's of things I really want to blog about today and none of them are really related to eachother. So, I am sorry if I am jumping all over the place here!
The first thing is the we have noticed people are starting to notice that Jacob is a little different. We have alot of people ask if he has Down's Syndrome and other just curious as to how old he is and when we tell them, they kind of give a strange look and an "oh" (like "oh" and he's not crawling/walking/taking/etc.). So, sometimes I just want to tell them as soon as they ask so they know why he is behind. Sometimes I kind of just want to lie about his age ( I know, horrible), but I would honestly rather people ask questions if they are wondering, rather than walk off not knowing and drawing their own conclusions. So, the question is, how would you approach it? The older he gets, the more obvious it will be that he is special in some way, so I am trying to think of the best way to explain it to our other kids, other people's kids and people in general..
The second things is, although I am VERY thankful that alot of people have been giving us valuable information for resources, it makes me wonder why we weren't given this info by Jacob's doctors. Everyone else seems to have been given support group info as soon as their baby was diagnosed. Nobody has given us anything, except a farewell and a "good luck". It would have been nice to be pointed towards some other special needs parents and resources to get us through the hard times. On the other hand, starting this blog has led me to some great people with valuable information and advice and for that I am very thankful!
The first thing is the we have noticed people are starting to notice that Jacob is a little different. We have alot of people ask if he has Down's Syndrome and other just curious as to how old he is and when we tell them, they kind of give a strange look and an "oh" (like "oh" and he's not crawling/walking/taking/etc.). So, sometimes I just want to tell them as soon as they ask so they know why he is behind. Sometimes I kind of just want to lie about his age ( I know, horrible), but I would honestly rather people ask questions if they are wondering, rather than walk off not knowing and drawing their own conclusions. So, the question is, how would you approach it? The older he gets, the more obvious it will be that he is special in some way, so I am trying to think of the best way to explain it to our other kids, other people's kids and people in general..
The second things is, although I am VERY thankful that alot of people have been giving us valuable information for resources, it makes me wonder why we weren't given this info by Jacob's doctors. Everyone else seems to have been given support group info as soon as their baby was diagnosed. Nobody has given us anything, except a farewell and a "good luck". It would have been nice to be pointed towards some other special needs parents and resources to get us through the hard times. On the other hand, starting this blog has led me to some great people with valuable information and advice and for that I am very thankful!
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