It amazes me what Zachary can do in a week. He went from taking 5 steps at a time to pretty much just taking off from the table and walking to where he sees fit. It's that cute little wobbly frankenstein walk. He will just takes off. Mind you, he doesn't get up in the middle of the floor and take off but he will pull himself up and take off. It is amazing.
We went to Chuck E Cheese for my nieces birthday and he walked from one end to the other to see his Papa. He was so proud. He got over excited and tried to run and did a face plant and got his first bloody lip. He didn't seem to mind but it sure did bleed. So each day he goes a little futher, gets a little stronger and builds more confidence. I let him walk on the sidewalk outside and he fell and skinned both knees. Poor guy.
Jason's parents were in town this week and took Jonathan to the arch. He was very excited and loves teasing his grandpa about his "pink bloomers". It's pretty comical to listen to the 2 of them discuss going to the barbie store and buying pink bloomers. I have to make sure to write this down in his baby book or something.
I suspect that on Zachary's 2nd birthday he will be walking very independently and will show everyone what he can do. He continues to amaze me and when the boys are not fighting, I love watching them play together.
Saturday, August 29, 2009
Thursday, August 20, 2009
August Physical Therapy
Today we had PT. Kelly and Amanda (a student) watched Zachary play and interacted with him. Kelly was pleased with the progress Zachary has made. She pointed out some things that he is doing that I didn't realize were "progress". It's nice to hear these things. I love how she has insight on so many things that as a mom, I just don't know. It's so refreshing.
Zachary is still taking a few steps between things and is much more sturdy. He isn't always running. He will drop to his knees rather than "fall" to stop. Kelly had him walk to her and when she said stop, he did. So we get to practice that now. I loved watching her get him to say words and do things that I just don't think about doing. I guess I do too much for him. I remember that with Jonathan.
I'm sure I will get the medical part of this messed up a bit but I'm gonna give it a try...Kelly says that Zachary pronates and while this can be normal in kids his age, she feels his pronation is a little more than that. Pronate means to turn or rotate (the foot) by abduction and eversion so that the inner edge of the sole bears the body's weight. I knew that this was normal and most children (as Jonathan did) outgrow it by the age of 2 or 3 but most children were walking by that age too. Because of this, Kelly wants Z to meet with an orthotist (Orthotists are allied health professionals who provide care to patients with disabling conditions of the limb and spine by designing, fabricating and fitting the patient with an orthosis, a custom made brace.) so he can be measured for SureStep. Thankfully she is going to submit this through FirstSteps and our caseworker there. I am praying that they pay for it. I have no clue how much these things cost but I bet it is not cheap! However from what I have read, the SureStep can be worn with regular shoes and it doesn't look like you can't even see anything...it's all on the foot and inside the shoe.
Zachary is making great progress and I am so proud of him! He is trying to talk so much more and understands even more. He likes to play a game with me where he says, "Mom, Mom, Mommy" and then when I say what he says, "I of woo (aka I love you)". It's the sweetest little thing. He also tries to do it with Jonathan but they are usually too busy fighting.
Well that's it for now!
Zachary is still taking a few steps between things and is much more sturdy. He isn't always running. He will drop to his knees rather than "fall" to stop. Kelly had him walk to her and when she said stop, he did. So we get to practice that now. I loved watching her get him to say words and do things that I just don't think about doing. I guess I do too much for him. I remember that with Jonathan.
I'm sure I will get the medical part of this messed up a bit but I'm gonna give it a try...Kelly says that Zachary pronates and while this can be normal in kids his age, she feels his pronation is a little more than that. Pronate means to turn or rotate (the foot) by abduction and eversion so that the inner edge of the sole bears the body's weight. I knew that this was normal and most children (as Jonathan did) outgrow it by the age of 2 or 3 but most children were walking by that age too. Because of this, Kelly wants Z to meet with an orthotist (Orthotists are allied health professionals who provide care to patients with disabling conditions of the limb and spine by designing, fabricating and fitting the patient with an orthosis, a custom made brace.) so he can be measured for SureStep. Thankfully she is going to submit this through FirstSteps and our caseworker there. I am praying that they pay for it. I have no clue how much these things cost but I bet it is not cheap! However from what I have read, the SureStep can be worn with regular shoes and it doesn't look like you can't even see anything...it's all on the foot and inside the shoe.
Zachary is making great progress and I am so proud of him! He is trying to talk so much more and understands even more. He likes to play a game with me where he says, "Mom, Mom, Mommy" and then when I say what he says, "I of woo (aka I love you)". It's the sweetest little thing. He also tries to do it with Jonathan but they are usually too busy fighting.
Well that's it for now!
Tuesday, August 18, 2009
It's not me
I got the call today that the genetics test they did for me came back normal. I do not have NS.
Now we determine if we have Jason tested. My pocket tells me no way. Zacharys test cost $1700 and mine cost $300. Is it worth it? I mean the stress of having to pay another $300 to find out if the NS was passed down or if it was a spontaneous mutation is probably going to cause more problems then the results would. I mean what will it solve by finding out if the NS was passed down? Nothing. Nothing will change and the only thing to come from it is that we will now have paid (well in our case owe) a total of $12,400 in medical bills since Jan. 2009 rather than $12,100. I don't need that.
In fact, I shouldn't have done the test on me. I should have just accepted the fact that my son is just who he is and for some reason he was chosen by God to have NS and we will continue to accept him, love him and help him as best we can. He is our gift and it is time to stop questioning it and just accept the diagnosis and move on.
I'm sure in the next few days I will get yet another bill in the mail and this time I will feel like I just wasted $300 we don't have because quite frankly that's what it was. If it was a test to help one of my boys, obviously it would not have been wasted and I would feel this way.
I try to be realistic about it all and tell myself that we don't have it so bad and that yes, it could be worse. But when I sit in my living room with all the medical bills it becomes overwhelming. They all want a minimum of $25 a month or they will send us to collections. Are you serious? I owe 5 companies over $500 each and I can't afford $125 a month plus regular appts and my prescriptions. I mean seriously, give me a freakin' break people! I am tired of making phone calls, explaining my situation and asking to make some sort of arrangement. It's exhausting and quite frankly, I'm tired of it. Don't get me wrong, I am so thankful and overjoyed that my buddy is ok but I can still be frustrated, right? If not, too bad cus I am. We have cut nearly all expenses that we can and maxed out credit cards paying these bills and still owe $3,000 in bills. I think we'll make it, one day and I pray that one day we can look back and talk about how hard times were and how many ramen noodle dinners we ate. But you know what, even though I stress over what bills to pay next and what cheap meals to make, I would do this all again and a million times over if it meant having my Zachary here with us. Yes we are lucky, even if we can't answer our phone because we don't have money to pay the person on the other end. It will be okay, right?
Now we determine if we have Jason tested. My pocket tells me no way. Zacharys test cost $1700 and mine cost $300. Is it worth it? I mean the stress of having to pay another $300 to find out if the NS was passed down or if it was a spontaneous mutation is probably going to cause more problems then the results would. I mean what will it solve by finding out if the NS was passed down? Nothing. Nothing will change and the only thing to come from it is that we will now have paid (well in our case owe) a total of $12,400 in medical bills since Jan. 2009 rather than $12,100. I don't need that.
In fact, I shouldn't have done the test on me. I should have just accepted the fact that my son is just who he is and for some reason he was chosen by God to have NS and we will continue to accept him, love him and help him as best we can. He is our gift and it is time to stop questioning it and just accept the diagnosis and move on.
I'm sure in the next few days I will get yet another bill in the mail and this time I will feel like I just wasted $300 we don't have because quite frankly that's what it was. If it was a test to help one of my boys, obviously it would not have been wasted and I would feel this way.
I try to be realistic about it all and tell myself that we don't have it so bad and that yes, it could be worse. But when I sit in my living room with all the medical bills it becomes overwhelming. They all want a minimum of $25 a month or they will send us to collections. Are you serious? I owe 5 companies over $500 each and I can't afford $125 a month plus regular appts and my prescriptions. I mean seriously, give me a freakin' break people! I am tired of making phone calls, explaining my situation and asking to make some sort of arrangement. It's exhausting and quite frankly, I'm tired of it. Don't get me wrong, I am so thankful and overjoyed that my buddy is ok but I can still be frustrated, right? If not, too bad cus I am. We have cut nearly all expenses that we can and maxed out credit cards paying these bills and still owe $3,000 in bills. I think we'll make it, one day and I pray that one day we can look back and talk about how hard times were and how many ramen noodle dinners we ate. But you know what, even though I stress over what bills to pay next and what cheap meals to make, I would do this all again and a million times over if it meant having my Zachary here with us. Yes we are lucky, even if we can't answer our phone because we don't have money to pay the person on the other end. It will be okay, right?
Wednesday, August 12, 2009
"I'm not your baby anymore Mom"
Yes those were the words that my sweet (sometimes) Jonathan said to me. My heart broke. Ok not really but what is he ready to pack his bags and flee from this life of insanity? Not so quick, I get to go first!
Jonathan IS a big boy and he is so brave. He has lost his 2 teeth and the 2 permanent ones are coming in. He did great at the dentist. I wasn't crazy about her but thank goodness her assistant was wonderful! And besides, I have not had a dentist clean my teeth in years! Wait, let me explain that, it is usually the hygenist that does it but this time it was the dentist. She'll do for now. My sweet boy sat very still and let them do their job. I was so proud of him. On our way home he pretty much cried b/c he said he was so tired and just wanted to sleep. What?! He then told me he had a sore throat and yes a fever. Strep. He never gets sick so when he woke up at 3am and said, "Mommy call Dr. Kate!" I knew he was sick. He doesn't mess around! Dr. Kate confirmed that today. She said his throat was way nasty and if it isn't gone in 7 days to call her back. He was a very good boy there too. He was very glad that it was Z getting the shots and not him. Ha!
So today he missed his first day at his new preschool. He kept asking me what the teachers/kids were doing and if they missed him. He is still adjusting to being there all day long but he is getting better. He likes it and talks about it all the time but complains he is there too long. :-) Poor kid is in for a shock when he realizes this is his life for the next 14 years...school! Then it is a job. Ha!
Zachary had to go in for his 21 month check up and for 4 more shots. Will he ever be caught up? He was cranky and not afraid to show it. It all started with the scale. Seriously, you only weigh 23lbs there is NOTHING to cry about! I cry when I step on the scale but you shouldn't! His spleen and liver were normal, tubes were good and all seems well. I asked about the PT being concerned about his high pain tolerance and she said she thinks it is just him. As she reminded me when he was born he broke his collar bone but it was undetected until 5 wks old...after it healed. So it may just be him. She said she hopes she doesn't see us until Sept/Oct for flu shots. *fingers crossed* He made sure he said thank you to everyone he saw and tried to grab 3 suckers on the way out.
I'm hoping that Z and I are spared of strep because the 3 of us shared a drink on the way to the doctor. DUH! He has the 2nd eye tooth on the bottom coming in and is a bit of a fuss...ok a BIG bit of a fuss. When you got one crying his throat hurts and the other just crying, it gets a bit stressful. And to all my friends on FaceBook, I really don't drink as much as it sounds like I do. I promise!
Z continues to take a few steps alone. If you ignore him he will walk from the table to the couch several times. He'll get there in his own time. I think my quiet time is over as Monster #2 is calling me. Good night!
Jonathan IS a big boy and he is so brave. He has lost his 2 teeth and the 2 permanent ones are coming in. He did great at the dentist. I wasn't crazy about her but thank goodness her assistant was wonderful! And besides, I have not had a dentist clean my teeth in years! Wait, let me explain that, it is usually the hygenist that does it but this time it was the dentist. She'll do for now. My sweet boy sat very still and let them do their job. I was so proud of him. On our way home he pretty much cried b/c he said he was so tired and just wanted to sleep. What?! He then told me he had a sore throat and yes a fever. Strep. He never gets sick so when he woke up at 3am and said, "Mommy call Dr. Kate!" I knew he was sick. He doesn't mess around! Dr. Kate confirmed that today. She said his throat was way nasty and if it isn't gone in 7 days to call her back. He was a very good boy there too. He was very glad that it was Z getting the shots and not him. Ha!
So today he missed his first day at his new preschool. He kept asking me what the teachers/kids were doing and if they missed him. He is still adjusting to being there all day long but he is getting better. He likes it and talks about it all the time but complains he is there too long. :-) Poor kid is in for a shock when he realizes this is his life for the next 14 years...school! Then it is a job. Ha!
Zachary had to go in for his 21 month check up and for 4 more shots. Will he ever be caught up? He was cranky and not afraid to show it. It all started with the scale. Seriously, you only weigh 23lbs there is NOTHING to cry about! I cry when I step on the scale but you shouldn't! His spleen and liver were normal, tubes were good and all seems well. I asked about the PT being concerned about his high pain tolerance and she said she thinks it is just him. As she reminded me when he was born he broke his collar bone but it was undetected until 5 wks old...after it healed. So it may just be him. She said she hopes she doesn't see us until Sept/Oct for flu shots. *fingers crossed* He made sure he said thank you to everyone he saw and tried to grab 3 suckers on the way out.
I'm hoping that Z and I are spared of strep because the 3 of us shared a drink on the way to the doctor. DUH! He has the 2nd eye tooth on the bottom coming in and is a bit of a fuss...ok a BIG bit of a fuss. When you got one crying his throat hurts and the other just crying, it gets a bit stressful. And to all my friends on FaceBook, I really don't drink as much as it sounds like I do. I promise!
Z continues to take a few steps alone. If you ignore him he will walk from the table to the couch several times. He'll get there in his own time. I think my quiet time is over as Monster #2 is calling me. Good night!
Tuesday, August 4, 2009
20 month Evaluation
Monday night Ms. Elena, from Parents as Teachers came over to conduct Z's 20 month evaluation. JD was a complete terror bur Ms. E is a mother of 6 and kept saying, "I understand. Don't worry. Mine do that too.". Bless her heart.
Anyway, we managed to complete's Z's evaluation. He is scoring above average on Personal/Social skills and Problem Solving...he's my charming little thinker! He was on target for fine motor skills. And as we expected, he was delayed in gross motor skills and communication. I asked if she felt he needed further evaluation and she said in her opinion she felt that as he grows more confident and stronger in his physical abilities then the rest will fall into place and to give him time. She was very excited to see how he has grown and what all he was doing since her last visit in May.
As I mentioned in another post, Z will take a few steps between 2 people or objects. His stop button is currently not working so he goes until he stops. I managed to get it on video so enjoy!
Anyway, we managed to complete's Z's evaluation. He is scoring above average on Personal/Social skills and Problem Solving...he's my charming little thinker! He was on target for fine motor skills. And as we expected, he was delayed in gross motor skills and communication. I asked if she felt he needed further evaluation and she said in her opinion she felt that as he grows more confident and stronger in his physical abilities then the rest will fall into place and to give him time. She was very excited to see how he has grown and what all he was doing since her last visit in May.
As I mentioned in another post, Z will take a few steps between 2 people or objects. His stop button is currently not working so he goes until he stops. I managed to get it on video so enjoy!
Sunday, August 2, 2009
A new life
Tomorrow, August 3, would have been my parents 52nd wedding anniversary if my mom were still alive. How my life has changed in nearly 2 years. I have been through things I never dreamed of and I have come out stronger. I have witnessed a miracle in my son that I never thought I would need and one that I feared would never happen. While I feel like I lost a lot, I gained so much as well. My heart still aches for my Mom and I am sure it always will.
In the past 2 years, I have seen my Dad grow in ways I never knew possible. I am so very proud of him for the man he always has been or for the man he has become. I can't imagine going through all he did with Mom and losing his wife of 50 years. He pulled through and has become a stronger person and is settling into his "new" life. His new normal. So many changes have taken place for Dad. In these past 2 years he has lost friends, family and his wife. He rose above all this and has had the courage to step out into new territory. He bought himself a house. After living at the same place for 40 years (maybe longer but I have no clue how long) he is getting a fresh start. He found himself an adorable house, painted it, carpeted it and has moved in. He loves his house and his face lights up when he talks about it.
This weekend we went through more stuff at his old house. I think Friday night we were all overwhelmed...in a way it was like saying goodbye to Mom all over again. We found more stuff, more pictures and many more memories.
As I type this, I am looking out the window and can see how bright the moon is. I am also thinking how right things are in my world. There was a time when I didn't think I'd feel this content and this happy again. Dad is venturing out to start his new life, I had a nice family weekend with no time outs and no fighting with the boys and Zachary is showing more signs of walking and talking. The boys play together and when I see my little Z light up as his big brother plays with him and I see his million dollar smile, I know that my life is good and there is nothing else that I need. I hope that Dad's adventure into his "new" life leaves him feeling as good as I do right now. He deserves that.
In the past 2 years, I have seen my Dad grow in ways I never knew possible. I am so very proud of him for the man he always has been or for the man he has become. I can't imagine going through all he did with Mom and losing his wife of 50 years. He pulled through and has become a stronger person and is settling into his "new" life. His new normal. So many changes have taken place for Dad. In these past 2 years he has lost friends, family and his wife. He rose above all this and has had the courage to step out into new territory. He bought himself a house. After living at the same place for 40 years (maybe longer but I have no clue how long) he is getting a fresh start. He found himself an adorable house, painted it, carpeted it and has moved in. He loves his house and his face lights up when he talks about it.
This weekend we went through more stuff at his old house. I think Friday night we were all overwhelmed...in a way it was like saying goodbye to Mom all over again. We found more stuff, more pictures and many more memories.
As I type this, I am looking out the window and can see how bright the moon is. I am also thinking how right things are in my world. There was a time when I didn't think I'd feel this content and this happy again. Dad is venturing out to start his new life, I had a nice family weekend with no time outs and no fighting with the boys and Zachary is showing more signs of walking and talking. The boys play together and when I see my little Z light up as his big brother plays with him and I see his million dollar smile, I know that my life is good and there is nothing else that I need. I hope that Dad's adventure into his "new" life leaves him feeling as good as I do right now. He deserves that.
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