This morning was Andrew's first Mass- where he had a job. We have been practicing his reading all week. It had the word, inheritance, in it and caused a challenge for us at first, but somewhere along the way he was able to spit it out. It could have been the constant quizzing I was doing...How do you say that word? But he spit it out with no problem.
The other day I wrote about how his Great-Grandpa Shoe would probably be tearing up if he could have been there. Like I fool, I teared up as he read it without any problem. When did my little man get so big?
MC & Bob were there which made for anoter surreal moment. My first Mass where I could do something was with MC and now MC and I were watching Drew. At one point she leaned over to me and said...Do you remember what you did at your first Mass? My reply was...No...that was 23 years ago! She said that she would go home and look because she was sure she probably still had her lesson plans!
Friday, February 18, 2011
Wednesday, February 16, 2011
Learning How to Tie Shoes
I forgot to share this. We are starting to teach Matthew how to tie shoes and Jason is so good at this. He is so patient and he has his little thing he does to help them...Loop swoop and pull.
However, tonight at Bob and MC's, she was saying how he has to learn how to tie his shoes and I said that Dad was starting to help him. With confidence Matt shares...yep, loop, swoop and poop.
I'm surprised that MC didn't drop Chris she was laughing so hard! I was rolling too! Too funny!
For the record...we did correct him.
However, tonight at Bob and MC's, she was saying how he has to learn how to tie his shoes and I said that Dad was starting to help him. With confidence Matt shares...yep, loop, swoop and poop.
I'm surprised that MC didn't drop Chris she was laughing so hard! I was rolling too! Too funny!
For the record...we did correct him.
Leg Issues
With a few days off, I have been trying to work with Mr. Chris in the whole walking category. He will be 14 months on Sunday so I'm trying to help it along. He hasn't wanted to stand much lately and I'm not sure as to why. He's been very sleepy, sleeping for 4-6 hours during the day and then 10-12 hours at night. Not sure why...maybe he's getting ready to grow.
The thing I have noticed when trying to walk with him is that he is dragging his left leg. He uses his left leg to pull himself from sitting to standing, but when he's taking steps now it is lagging behind. It's almost how some kiddos go up stairs, but this is across the floor. He takes about 10 steps and then falls. The other weird part is that he walks in a diagonal to the right. That parts kind of funny! We see PT on Monday so I will be anxious to see what she says.
I'm not sure why this is. Both issues are frustrating me. We are doing good on the food and drinks. We must have aspirated tonight however because he was wheezing and had stridor after he fell asleep tonight. He was running a temp yesterday in the Chiro office and is having a couple eczema breakouts, so I'm almost expecting something to come up.
Dr. K had said that when eczema exacerbation happens, it usually means there is some type of infection going on. It has held true for the bigger boys.
Other than that, our separation anxiety has set in! He also just like Matt. He likes to be up and see what I am doing whether I'm cleaning, doing laundry or cooking. He's fascinated with the iPad!
Our genetics is coming up in 4 weeks. My heart skips beats just thinking about it. I was telling a couple of my co-workers today that in researching his issues the spectrum is so wide...from shortened life span to lots of PT needed. It's hard to not think of the worse, although I'm pretty sure that is not this case.
The big boys have been out and enjoying the nice weather. Andrew is preparing for his first Mass this week at school! He gets to read..."ya know that part where ya speak, then ya sing, then ya speak, then ya sing." (his defination...aka the responsorial psalm.) He's pretty pumped not only will he have one heck of a crowd at Mass cheering him on, but he has 2 Great-Grandparents in heaven that will be grinning from ear to ear! If Great-Grandpa Shoe was still here to be at Mass, I'm sure he'd be crying. He always did that when I was in high school and had what he thought as an important job at Mass!
Matt has really grown up these last couple weeks it seems. He's still in a race to see who's slower...he or molasses, but he's doing things around the house, that he hasn't done before. Again...all in his own way and time. He's so funny. He's having leg issues tonight as well. He just doesn't have great strength in his legs since he couldn't be outside for winter. With all the nice weather he's been out so it makes his joints sore. He's a trooper!
The thing I have noticed when trying to walk with him is that he is dragging his left leg. He uses his left leg to pull himself from sitting to standing, but when he's taking steps now it is lagging behind. It's almost how some kiddos go up stairs, but this is across the floor. He takes about 10 steps and then falls. The other weird part is that he walks in a diagonal to the right. That parts kind of funny! We see PT on Monday so I will be anxious to see what she says.
I'm not sure why this is. Both issues are frustrating me. We are doing good on the food and drinks. We must have aspirated tonight however because he was wheezing and had stridor after he fell asleep tonight. He was running a temp yesterday in the Chiro office and is having a couple eczema breakouts, so I'm almost expecting something to come up.
Dr. K had said that when eczema exacerbation happens, it usually means there is some type of infection going on. It has held true for the bigger boys.
Other than that, our separation anxiety has set in! He also just like Matt. He likes to be up and see what I am doing whether I'm cleaning, doing laundry or cooking. He's fascinated with the iPad!
Our genetics is coming up in 4 weeks. My heart skips beats just thinking about it. I was telling a couple of my co-workers today that in researching his issues the spectrum is so wide...from shortened life span to lots of PT needed. It's hard to not think of the worse, although I'm pretty sure that is not this case.
The big boys have been out and enjoying the nice weather. Andrew is preparing for his first Mass this week at school! He gets to read..."ya know that part where ya speak, then ya sing, then ya speak, then ya sing." (his defination...aka the responsorial psalm.) He's pretty pumped not only will he have one heck of a crowd at Mass cheering him on, but he has 2 Great-Grandparents in heaven that will be grinning from ear to ear! If Great-Grandpa Shoe was still here to be at Mass, I'm sure he'd be crying. He always did that when I was in high school and had what he thought as an important job at Mass!
Matt has really grown up these last couple weeks it seems. He's still in a race to see who's slower...he or molasses, but he's doing things around the house, that he hasn't done before. Again...all in his own way and time. He's so funny. He's having leg issues tonight as well. He just doesn't have great strength in his legs since he couldn't be outside for winter. With all the nice weather he's been out so it makes his joints sore. He's a trooper!
Friday, February 11, 2011
Oh Matt!
I have decided that Matthew is going to be a stand up comedian.
This morning I get home from work and he shares this story: Last night after they play basketball these girls in pink shirts came out and danced and they...like...blew my head off. (ME) How did they blow your head off? (Matt) By dancing! They just blew my head off!!!
Obviously the girls had an awesome dance.
Then later in the morning, Chris' thickeners show up and he decides he's going to help bring them in the house. He puts on his shoes, t-shirt and his coat...note I did not say pants! So he goes out and after like a min, Jason goes to find him and he finds him at the end of the driveway helping the garbage man! Jason asked him a question and and his response was: They didn't even throw me away!
Oh my child....you are too funny!
This morning I get home from work and he shares this story: Last night after they play basketball these girls in pink shirts came out and danced and they...like...blew my head off. (ME) How did they blow your head off? (Matt) By dancing! They just blew my head off!!!
Obviously the girls had an awesome dance.
Then later in the morning, Chris' thickeners show up and he decides he's going to help bring them in the house. He puts on his shoes, t-shirt and his coat...note I did not say pants! So he goes out and after like a min, Jason goes to find him and he finds him at the end of the driveway helping the garbage man! Jason asked him a question and and his response was: They didn't even throw me away!
Oh my child....you are too funny!
Tuesday, February 08, 2011
Long few days...
I apologize for my last post. I didn't mean for it to turn out like it did. Just had boat loads of anxiety going in to this week and to be honest, not much improvement expected until after genetics. But thank you for all the kind words and prayers.
Anywho, little man had a swallow study on Monday after making a quick stop to see Trent and Tiff for another adjustment and some cranial/sacral.
Jen walked in, as her nomal cheery self and took one look at me and said...what's wrong mom? Explained I was just trying to keep my heart from pounding out of my chest. I was really nervous, Chris took it like an old pro! He just sat there and let Jen hand him things and he ate and drank them accordingly. It greatly helped that he was familiar with Jen and I could sit back and try to understand what was going on, on the screen.
In November, if you remember, he aspirated EVERYTHING. Solids, liquids, whatever...everything. After all the therapy and altering things here, Monday showed SIGNIFICANT improvement, accroding to the radiologist. Jen reassured me this morning during therapy, that before he was aspirating everything and now, all he is aspirating is the nectar thick liquids and the thin. He has less residual in his mouth and on his tongue and isn't pocketing things like he was before. He is handling his boluses better and is taking from a sippy quite nicely. Huge, HUGE change from November!!!
Jen was excited, I however, was still skeptical. The part I struggle with is the why? What is going on, that is causing this problem. I'm not sure if I was relieved that the study was better or worried about the unknown, but in the middle of the main lobby, I broke down crying like a baby. Jen reassured me that she feels he is more stable now that he ever has been. We made plans to talk at therapy this a.m.
Therapy was bittersweet today. Chris was exhausted and didn't want to do it and we didn't get to the numbers we normally do. Meanwhile, Jen and I discussed, continuing vs putting therapy on hold. She again reassured me that because of the swallow study she is confident he will do fine until I decide to start up again. She pointed out that we are learning his triggers...i.e. ear infection, sinus congestion, drinking Matt's 7 up...and therefore know how to prevent or treat to help his swallowing. Because of this, the plan was made to put therapy on hold till this summer.
My other question I had was when he was aspirating the honey thick liquids we still went with it and now we are tolerating ok. Why couldn't we do this with the nectar. She said that his boluses with the nectar were too large and she wasn't comfortable with them enough to send me home and do it on my own. This means, when we start therapy again this summer, we will introduce nectar thick liquids. Exciting stuff let me tell you.
The other part of the bittersweet moment at therapy, was saying good-bye to a good friend. Yes, we will text back and forth, but Jen has become a warrior for me and a person who helps me think through things and makes me confident in my choices for him, whether they be foods or doctors, not to mention, trully cares for Chris. I don't know if I have mentioned it before, but Jen's daughter has some neurological issues, so in a way, we could relate. Not to mention she's a Dr. Kronberg fan, who has now been dubbed K-dog. In December, I knew we wouldn't be gone for long, so it wasn't as big of a deal, but this time, my stomach is telling me different.
Saying good-bye was hard and Jen and I cried as we walked out, but it wasn't for our worries of Chris for once, but of putting a friendship on hold.
We also got to see Dr. Prestridge today and I'm always very impressed by her. I like her A LOT! Besides being very surprised...moreso startled by how much milk Chris drinks...she was very happy with the progress we are making! We have to go back and see her monthly, give or take a week, but all she could do was smile at him! Then again, he is pretty darn cute! ;)
So we are home. Our trips to Omaha are not over, I think I am still down there every other week for doctor appointments for Chris and possibly just a day or two, so FAR better than every week for 3 days. Part of me is not completely convinced we will make it to summer, but it's a good goal to set.
It will be good to have all 5 of us home this weekend and me not have to work. We need time together. I took Matt with me this week and he was so funny. He needed new shoes so we had to try on every pair in a 1 or 1.5 and then take a lap around the store to see which one he was the fastest in. Why do I need a daughter when I have a shopper in Matt. He loves to window gaze. Plus he informed me that when he grew up, he was going to be a singer and buy a house!
It was good for Andrew to have one-on-one time too. Michelle stated that he was beaming last night to just have things on his own!
I know I will be excited about the findings from this week. I'm pretty sure I just have to get past the exhaustion. Thanks again for all the prayers. We are getting there...
Anywho, little man had a swallow study on Monday after making a quick stop to see Trent and Tiff for another adjustment and some cranial/sacral.
Jen walked in, as her nomal cheery self and took one look at me and said...what's wrong mom? Explained I was just trying to keep my heart from pounding out of my chest. I was really nervous, Chris took it like an old pro! He just sat there and let Jen hand him things and he ate and drank them accordingly. It greatly helped that he was familiar with Jen and I could sit back and try to understand what was going on, on the screen.
In November, if you remember, he aspirated EVERYTHING. Solids, liquids, whatever...everything. After all the therapy and altering things here, Monday showed SIGNIFICANT improvement, accroding to the radiologist. Jen reassured me this morning during therapy, that before he was aspirating everything and now, all he is aspirating is the nectar thick liquids and the thin. He has less residual in his mouth and on his tongue and isn't pocketing things like he was before. He is handling his boluses better and is taking from a sippy quite nicely. Huge, HUGE change from November!!!
Jen was excited, I however, was still skeptical. The part I struggle with is the why? What is going on, that is causing this problem. I'm not sure if I was relieved that the study was better or worried about the unknown, but in the middle of the main lobby, I broke down crying like a baby. Jen reassured me that she feels he is more stable now that he ever has been. We made plans to talk at therapy this a.m.
Therapy was bittersweet today. Chris was exhausted and didn't want to do it and we didn't get to the numbers we normally do. Meanwhile, Jen and I discussed, continuing vs putting therapy on hold. She again reassured me that because of the swallow study she is confident he will do fine until I decide to start up again. She pointed out that we are learning his triggers...i.e. ear infection, sinus congestion, drinking Matt's 7 up...and therefore know how to prevent or treat to help his swallowing. Because of this, the plan was made to put therapy on hold till this summer.
My other question I had was when he was aspirating the honey thick liquids we still went with it and now we are tolerating ok. Why couldn't we do this with the nectar. She said that his boluses with the nectar were too large and she wasn't comfortable with them enough to send me home and do it on my own. This means, when we start therapy again this summer, we will introduce nectar thick liquids. Exciting stuff let me tell you.
The other part of the bittersweet moment at therapy, was saying good-bye to a good friend. Yes, we will text back and forth, but Jen has become a warrior for me and a person who helps me think through things and makes me confident in my choices for him, whether they be foods or doctors, not to mention, trully cares for Chris. I don't know if I have mentioned it before, but Jen's daughter has some neurological issues, so in a way, we could relate. Not to mention she's a Dr. Kronberg fan, who has now been dubbed K-dog. In December, I knew we wouldn't be gone for long, so it wasn't as big of a deal, but this time, my stomach is telling me different.
Saying good-bye was hard and Jen and I cried as we walked out, but it wasn't for our worries of Chris for once, but of putting a friendship on hold.
We also got to see Dr. Prestridge today and I'm always very impressed by her. I like her A LOT! Besides being very surprised...moreso startled by how much milk Chris drinks...she was very happy with the progress we are making! We have to go back and see her monthly, give or take a week, but all she could do was smile at him! Then again, he is pretty darn cute! ;)
So we are home. Our trips to Omaha are not over, I think I am still down there every other week for doctor appointments for Chris and possibly just a day or two, so FAR better than every week for 3 days. Part of me is not completely convinced we will make it to summer, but it's a good goal to set.
It will be good to have all 5 of us home this weekend and me not have to work. We need time together. I took Matt with me this week and he was so funny. He needed new shoes so we had to try on every pair in a 1 or 1.5 and then take a lap around the store to see which one he was the fastest in. Why do I need a daughter when I have a shopper in Matt. He loves to window gaze. Plus he informed me that when he grew up, he was going to be a singer and buy a house!
It was good for Andrew to have one-on-one time too. Michelle stated that he was beaming last night to just have things on his own!
I know I will be excited about the findings from this week. I'm pretty sure I just have to get past the exhaustion. Thanks again for all the prayers. We are getting there...
Sunday, February 06, 2011
New Year
Wow! I didn't realize that I hadn't written since the first of the year and so much has happened.
We finished with therapy the last week of December and had plans to take January off. Two weeks later, I had Jason take Chris to the doctor to have his ears checked because he hadn't been acting right and was draining green goo out of his ear. Doc said that his lungs were sounding bad, so we xray'd his lungs and low and behold, and infiltrate - - or pneumonia. My heart sunk! This is what we had been working against the whole time. He gave us 2 options, #1 therapy again or #2 let Dr. Prestridge and Dr. Murphy know which could possibly lead to a feeding tube. If you have to ask...we started therapy again.
We did a week of therapy and Jen and I thought back and forth as to what could have happened and what could have led to it. After all our thinking...we realized we weren't exactly sure what it was. In the meantime, Jason's Grandmother passed away and so we missed a couple and then went again.
He had a rough 3 days. He was coughing and choking and aspirating and at the end of the day, he sounded horrible and would have stridor and all I could do was sit there and hold him. Dr. Murphy had fortunately told me that with him aspirating, it would cause his larnynx to spasm and cause the stridor. He said that as long as it went away it was okay and to be expected with how much he was aspirating.
I felt like we were going backwards and fast. I hadn't changed anything and kept a very close eye on everything that went in his mouth. Jen reassured me that he had made huge changes, and after reading my last post, I am reminded that we are further than I tought. We visited Dr. K while we were in Omaha and come to find out Chris had a plugged ear tube which caused an ear infection which causes thicker secretions which makes him unable to swallow effectively. Like that chain? My anxiety dropped significantly after seeing Dr. K because had their not been an ear infection, there was going to be a "Come to Jesus" talk. An ear infection was the only thing that Jen and I hadn't thought of that could be causing the issues.
Since then we have continued therapy and then this coming week we will do a swallow study and visit with Dr. Prestridge. I am so nervous I could puke. So much is riding on this study.
In the mean time, we started PT in Omaha and the PT that began working with us, gave us excercises to do with him and things to change for him and it seemed liked we made leaps and bounds. Bounds so big to the point that Chris even took a few steps across the living room behind his push toy. Jason was home so we could both enjoy the excitement and I am not gonna lie...I was in tears! Jason thought I was a nerd, but they didn't know when this would happen. Unfortunately since then, we have only done it once or twice.
I also took him to visit my cousin who is a chiropractor. He adjusted him and his wife did some cranial/sacral on him, which I'm still not sure what it is, but I'm open for anything. The first time Trent adjusted him the day after was horrible. We couldn't put him down and he still fussed and that night he didn't sleep. Tiff had told me to let them know if he remained fussy so I made a 911 call to them and took him back in on a Saturday...Praise Jesus for awesome people and a small town!! :) Trent thought that he had stimulation overload as his spine was so restricted and tight. He adjusted him again and we came home and he took a 3.5 hour nap and woke up as my happy baby again. Since then, we have reached over our head, which we have never done. I jokingly told Tiff the other day that I had thought about taking him back and ask to put him back as my house was baby proofed as far as he could reach! Now, I need to reassess! ;) The other thing that Trent suggested was to have me cut back on his milk intake as milk increases the thickness of secretions...after that, I thought....DUH!
Our aspirating and stridor continues. I'm not sure why, but as we carried him in to the clinic the other day, Doc gave me a sideways glance as he heard him breath and I said...I know he sounds like crap, but I'm getting used to it. I lied. His ears were good and lungs sounded okay though.
I'm not gonna lie, as genetics in March gets closer, I get more nervous and scared. The aspirating continues and there are times when he's sleeping that he sounds so horrible, that I'm afraid to check on him in the morning because I'm afraid of what I'll find. After the one walking incident, he hasn't walked much more. He continues to pull himself to his feet and takes a few steps around things, but then will sit down. He doesn't want to stand on his legs regularly. He's also sleeping more. He will take 2 naps a day usually totaling between 4 and 6 hours and then be ready for bed at 8:30 and sleep until 7 or 8.
I just feel like there is nothing we can do until genetics. We just sit and wait and watch him struggle at times. His awesome attitude continues. He's so happy and content.
As for the big boys...they are struggling. Not only is their Dad gone continuously every 10 days, but Mom is coming and going. They are seeking attention, and Mom is trying her best to give it to them. We will get through it and am looking forward to summer when I can load them up and take them with me!!
We finished with therapy the last week of December and had plans to take January off. Two weeks later, I had Jason take Chris to the doctor to have his ears checked because he hadn't been acting right and was draining green goo out of his ear. Doc said that his lungs were sounding bad, so we xray'd his lungs and low and behold, and infiltrate - - or pneumonia. My heart sunk! This is what we had been working against the whole time. He gave us 2 options, #1 therapy again or #2 let Dr. Prestridge and Dr. Murphy know which could possibly lead to a feeding tube. If you have to ask...we started therapy again.
We did a week of therapy and Jen and I thought back and forth as to what could have happened and what could have led to it. After all our thinking...we realized we weren't exactly sure what it was. In the meantime, Jason's Grandmother passed away and so we missed a couple and then went again.
He had a rough 3 days. He was coughing and choking and aspirating and at the end of the day, he sounded horrible and would have stridor and all I could do was sit there and hold him. Dr. Murphy had fortunately told me that with him aspirating, it would cause his larnynx to spasm and cause the stridor. He said that as long as it went away it was okay and to be expected with how much he was aspirating.
I felt like we were going backwards and fast. I hadn't changed anything and kept a very close eye on everything that went in his mouth. Jen reassured me that he had made huge changes, and after reading my last post, I am reminded that we are further than I tought. We visited Dr. K while we were in Omaha and come to find out Chris had a plugged ear tube which caused an ear infection which causes thicker secretions which makes him unable to swallow effectively. Like that chain? My anxiety dropped significantly after seeing Dr. K because had their not been an ear infection, there was going to be a "Come to Jesus" talk. An ear infection was the only thing that Jen and I hadn't thought of that could be causing the issues.
Since then we have continued therapy and then this coming week we will do a swallow study and visit with Dr. Prestridge. I am so nervous I could puke. So much is riding on this study.
In the mean time, we started PT in Omaha and the PT that began working with us, gave us excercises to do with him and things to change for him and it seemed liked we made leaps and bounds. Bounds so big to the point that Chris even took a few steps across the living room behind his push toy. Jason was home so we could both enjoy the excitement and I am not gonna lie...I was in tears! Jason thought I was a nerd, but they didn't know when this would happen. Unfortunately since then, we have only done it once or twice.
I also took him to visit my cousin who is a chiropractor. He adjusted him and his wife did some cranial/sacral on him, which I'm still not sure what it is, but I'm open for anything. The first time Trent adjusted him the day after was horrible. We couldn't put him down and he still fussed and that night he didn't sleep. Tiff had told me to let them know if he remained fussy so I made a 911 call to them and took him back in on a Saturday...Praise Jesus for awesome people and a small town!! :) Trent thought that he had stimulation overload as his spine was so restricted and tight. He adjusted him again and we came home and he took a 3.5 hour nap and woke up as my happy baby again. Since then, we have reached over our head, which we have never done. I jokingly told Tiff the other day that I had thought about taking him back and ask to put him back as my house was baby proofed as far as he could reach! Now, I need to reassess! ;) The other thing that Trent suggested was to have me cut back on his milk intake as milk increases the thickness of secretions...after that, I thought....DUH!
Our aspirating and stridor continues. I'm not sure why, but as we carried him in to the clinic the other day, Doc gave me a sideways glance as he heard him breath and I said...I know he sounds like crap, but I'm getting used to it. I lied. His ears were good and lungs sounded okay though.
I'm not gonna lie, as genetics in March gets closer, I get more nervous and scared. The aspirating continues and there are times when he's sleeping that he sounds so horrible, that I'm afraid to check on him in the morning because I'm afraid of what I'll find. After the one walking incident, he hasn't walked much more. He continues to pull himself to his feet and takes a few steps around things, but then will sit down. He doesn't want to stand on his legs regularly. He's also sleeping more. He will take 2 naps a day usually totaling between 4 and 6 hours and then be ready for bed at 8:30 and sleep until 7 or 8.
I just feel like there is nothing we can do until genetics. We just sit and wait and watch him struggle at times. His awesome attitude continues. He's so happy and content.
As for the big boys...they are struggling. Not only is their Dad gone continuously every 10 days, but Mom is coming and going. They are seeking attention, and Mom is trying her best to give it to them. We will get through it and am looking forward to summer when I can load them up and take them with me!!
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