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!!
Wednesday, December 29, 2010
One to Go
Another week has passed and our therapy is coming to an end for this round. Jen asked me if I wanted to continue and I told her for the sake of our family, we needed a break. Chris has one more treatment on Monday and a visit with Dr. Prestridge and then we head home...for a few weeks.
Chris continues to do well with therapy and for the matter at hand...when he's not at therapy. I've struggled this week with stopping versus keeping going and if it's doing anything and what have you. This is the list I've come up with, but let me remind you first, that before therapy started, Chris had no sounds and choked, coughed and gagged on every meal and through the night!
Since therapy we:
1. sleep through the night with no coughing
2. eat a meal with rarely a cough - still an improvement from the "clearing" cough
3. tolerate big boy foods
4. have multiple sounds, including: mom, da, ba ba, cup, up
5. rarely ever do we choke
6. have a very dear friend in Jen - this may be a stretch! :)
I swear the list was bigger earlier. The sounds in and of themself are HUGE!!! We also have growls and grunts and all sorts of funny noises. His latest thing has been furrowing his eyebrows and he knows that exactly the right time!
Our legs have had no improvement. There are most likely going to be PT appointments coming up, but hopefully we will get to do that from here!
The boys are back to school on Tuesday and it will be great to get back to normal.
Chris continues to do well with therapy and for the matter at hand...when he's not at therapy. I've struggled this week with stopping versus keeping going and if it's doing anything and what have you. This is the list I've come up with, but let me remind you first, that before therapy started, Chris had no sounds and choked, coughed and gagged on every meal and through the night!
Since therapy we:
1. sleep through the night with no coughing
2. eat a meal with rarely a cough - still an improvement from the "clearing" cough
3. tolerate big boy foods
4. have multiple sounds, including: mom, da, ba ba, cup, up
5. rarely ever do we choke
6. have a very dear friend in Jen - this may be a stretch! :)
I swear the list was bigger earlier. The sounds in and of themself are HUGE!!! We also have growls and grunts and all sorts of funny noises. His latest thing has been furrowing his eyebrows and he knows that exactly the right time!
Our legs have had no improvement. There are most likely going to be PT appointments coming up, but hopefully we will get to do that from here!
The boys are back to school on Tuesday and it will be great to get back to normal.
Wednesday, December 22, 2010
Tuesday
Whew...we've been busy since the last time I've updated. I worked a couple shifts, we had Shoemaker Christmas, had a little man turn 1 and made yet another trip back to Omaha. Somewhere in there I did laundry...I promise! :)
We remain status quo...which I am content with. Chris is doing great...minus the big bruise on his head I accidentally inflicted this afternoon. We were playing in the kitchen here at Grandma K's and...BONK...onto the hard floor! I can say however, that he has still had less bruising to his cranium than either one of the older boys have! :)
The funny thing is that he's started grunting and growling. To get playing with the big boys or getting mad at you he growls. He'll even just crawl up behind you and growl at your heels. It's hilarious. I wish I could share it with everyone.
Anyway, we are on to 1 of our last 5 treatments for the year. I was reminded today that we have been making this trip back and forth for 3-4 days at a time since the Week of Nov. 8. Oy! I'm not sure where the time has gone!
Anywho, he is doing great and tolerating treatment just fine. His every move and everything that goes in to his mouth has started to be documented. After my scare last week, I have resorted back to baby food which Jen wanted me to get him off of, but it is the only constant that I can keep with going from Aunt Claire's to Grandma Shoe's to daycare. In the last couple weeks I've learned about watching for residual and what to do if it's there and how to clear if it is and how to change the viscosity of the food if it is...I didn't feel like sharing that with all the people that feed him and he does great with baby food! :)
Jen and I have come to the conclusion though that we thing his swallowing is worsened by the copious amounts of snot and mucous he has. I have been giving him a decongestant, but it makes him so sleepy and when he fatigues and we try to eat...you guessed it...more issues...so it's just a viscious cycle.
Tomorrow we will have therapy in the a.m. and then see our favorite Dr. K around noon to see what he thinks about the mucous issue and to just discuss with him what he's thinking. I can share with you that, after 3 emails and much, MUCH suggestion from him, we see genetics...in March. That was the soonest we could get him in. He is however, on the cancel list. Dr. K's point was the fact that with hypotonia and the dysphagia, they are not definite diagnosis. They are symptoms that can lead to other diagnoses, many of them syndromes. He stated in his emails that there are some pretty serious ones that we may want to know about for the future.
With that said, if you read the front page of the Omaha World Herald Sunday, you may be following me, if you didn't I put the link on my facebook or google it! It's worth the read...just keep kleenexes handy. I will be honest...I bawled through most of it. The only symptom that this child had that Chris hasn't...respiratory distress and with our mucous trouble and aspiration problems...it worries me. Now, do I think he has what this other baby had...no, I would hope if he did signs of it could be picked up on the MRI, however, it just makes a person think.
It's been hard lately watching kids his age and younger, walk and talk and do things that he should be doing and not feel sad and frustrated about it. I remind myself that things could be TOTALLY worse, but I know he'd love to be running with the big boys. He'll catch up eventually I know, but I just worry as to how long that will take. Our EDN services were denied because he is where an 11 month old should be so he's "Not that bad." Cognitively he's on track.
We celebrated Chris' birthday Sunday with family and it was so much fun. Chris ate it up. I propped him on the table to open his gifts and he did so good! We are truly blessed to have such an amazing family and close friends! We even celebrated Jack's birthday (our nephew) which is tomorrow.
This week has been better for the big boys. They got to come down with me and get completely spoiled by Grandma K on Monday, which then drove Mom nuts Monday night! God bless the woman, but I'm pretty sure she does it on purpose...she just needs to wait til her son is around!! :) HAHA! Kidding! They had a ball. Tonight we went to the Western Heritage Museum and after a 45 min wait for Santa we were all ready to run wild! The boys were SO good though.
They've had fun though. Today after Chris' therapy I took them on a tour of my favorite places in Omaha and showed them where I used to live when I met Jason and where my Great-Grandma Chris lived and where Grandma and Grandpa Shoemaker met...technically. It was so much fun. Drew loved every minute of it and Matt could care less. Chris slept through it all!! :)
We head home tomorrow and then I work my 2 shifts, including part of the holiday. I would be lying if I didn't say that I am looking forward to our break from therapy. It is doing great things for him, but it's running me ragged. I told Jason tonight that I am taking a 24 hour personal day in January! :) He was okay with it...I think he knows it will be good for his health and safety too! :) HEHE!
We remain status quo...which I am content with. Chris is doing great...minus the big bruise on his head I accidentally inflicted this afternoon. We were playing in the kitchen here at Grandma K's and...BONK...onto the hard floor! I can say however, that he has still had less bruising to his cranium than either one of the older boys have! :)
The funny thing is that he's started grunting and growling. To get playing with the big boys or getting mad at you he growls. He'll even just crawl up behind you and growl at your heels. It's hilarious. I wish I could share it with everyone.
Anyway, we are on to 1 of our last 5 treatments for the year. I was reminded today that we have been making this trip back and forth for 3-4 days at a time since the Week of Nov. 8. Oy! I'm not sure where the time has gone!
Anywho, he is doing great and tolerating treatment just fine. His every move and everything that goes in to his mouth has started to be documented. After my scare last week, I have resorted back to baby food which Jen wanted me to get him off of, but it is the only constant that I can keep with going from Aunt Claire's to Grandma Shoe's to daycare. In the last couple weeks I've learned about watching for residual and what to do if it's there and how to clear if it is and how to change the viscosity of the food if it is...I didn't feel like sharing that with all the people that feed him and he does great with baby food! :)
Jen and I have come to the conclusion though that we thing his swallowing is worsened by the copious amounts of snot and mucous he has. I have been giving him a decongestant, but it makes him so sleepy and when he fatigues and we try to eat...you guessed it...more issues...so it's just a viscious cycle.
Tomorrow we will have therapy in the a.m. and then see our favorite Dr. K around noon to see what he thinks about the mucous issue and to just discuss with him what he's thinking. I can share with you that, after 3 emails and much, MUCH suggestion from him, we see genetics...in March. That was the soonest we could get him in. He is however, on the cancel list. Dr. K's point was the fact that with hypotonia and the dysphagia, they are not definite diagnosis. They are symptoms that can lead to other diagnoses, many of them syndromes. He stated in his emails that there are some pretty serious ones that we may want to know about for the future.
With that said, if you read the front page of the Omaha World Herald Sunday, you may be following me, if you didn't I put the link on my facebook or google it! It's worth the read...just keep kleenexes handy. I will be honest...I bawled through most of it. The only symptom that this child had that Chris hasn't...respiratory distress and with our mucous trouble and aspiration problems...it worries me. Now, do I think he has what this other baby had...no, I would hope if he did signs of it could be picked up on the MRI, however, it just makes a person think.
It's been hard lately watching kids his age and younger, walk and talk and do things that he should be doing and not feel sad and frustrated about it. I remind myself that things could be TOTALLY worse, but I know he'd love to be running with the big boys. He'll catch up eventually I know, but I just worry as to how long that will take. Our EDN services were denied because he is where an 11 month old should be so he's "Not that bad." Cognitively he's on track.
We celebrated Chris' birthday Sunday with family and it was so much fun. Chris ate it up. I propped him on the table to open his gifts and he did so good! We are truly blessed to have such an amazing family and close friends! We even celebrated Jack's birthday (our nephew) which is tomorrow.
This week has been better for the big boys. They got to come down with me and get completely spoiled by Grandma K on Monday, which then drove Mom nuts Monday night! God bless the woman, but I'm pretty sure she does it on purpose...she just needs to wait til her son is around!! :) HAHA! Kidding! They had a ball. Tonight we went to the Western Heritage Museum and after a 45 min wait for Santa we were all ready to run wild! The boys were SO good though.
They've had fun though. Today after Chris' therapy I took them on a tour of my favorite places in Omaha and showed them where I used to live when I met Jason and where my Great-Grandma Chris lived and where Grandma and Grandpa Shoemaker met...technically. It was so much fun. Drew loved every minute of it and Matt could care less. Chris slept through it all!! :)
We head home tomorrow and then I work my 2 shifts, including part of the holiday. I would be lying if I didn't say that I am looking forward to our break from therapy. It is doing great things for him, but it's running me ragged. I told Jason tonight that I am taking a 24 hour personal day in January! :) He was okay with it...I think he knows it will be good for his health and safety too! :) HEHE!
Tuesday, December 14, 2010
Dr. P
Therapy went well again this morning. I learned potatoes may not be his thing. They work well at therapy though because the vitalstim machine helps give him the extra strength he needs to swallow them.
It's just so much to wrap your brain around and I've never had to think about food so much and put so much thought in to it. You have to factor in viscosity and texture and everything else he's eating with it. OY! We will make it though! I just open up my mouth and swallow! :) Chris has that problem too...his just gets stuck! :)
We saw Dr. Prestridge and she said overall she is happy with him. She too, is thinking along the lines of hypotonia. Not sure as to why, but should that be the diagnosis, if we ever get one...that makes a lot of sense, even from birth.
Anyway, she stated that she is okay with the choking and the coughing in his case because it is his way of keeping his airway clear. She said that if he was having numerous lung infections, it would be a different story, but for now he's not.
Because he isn't having the lung infections, she does not want to put in feeding tube in...YAY! She said that she is afraid that once she puts it in, it would take a long time to get rid of it. This being because he would get everything through a tube except for at therapy and then our muscle strength would go down hill...fast.
So that's where we are at. We continue with therapy and hope things get back to where they were last week. I have to retrain my brain to know that choking and coughing is okay after he eats or between or whatever because it's his defense mechanism. We will follow up with Dr. Prestridge in a couple weeks. But she sure likes how he likes to flirt with her! ;)
It's just so much to wrap your brain around and I've never had to think about food so much and put so much thought in to it. You have to factor in viscosity and texture and everything else he's eating with it. OY! We will make it though! I just open up my mouth and swallow! :) Chris has that problem too...his just gets stuck! :)
We saw Dr. Prestridge and she said overall she is happy with him. She too, is thinking along the lines of hypotonia. Not sure as to why, but should that be the diagnosis, if we ever get one...that makes a lot of sense, even from birth.
Anyway, she stated that she is okay with the choking and the coughing in his case because it is his way of keeping his airway clear. She said that if he was having numerous lung infections, it would be a different story, but for now he's not.
Because he isn't having the lung infections, she does not want to put in feeding tube in...YAY! She said that she is afraid that once she puts it in, it would take a long time to get rid of it. This being because he would get everything through a tube except for at therapy and then our muscle strength would go down hill...fast.
So that's where we are at. We continue with therapy and hope things get back to where they were last week. I have to retrain my brain to know that choking and coughing is okay after he eats or between or whatever because it's his defense mechanism. We will follow up with Dr. Prestridge in a couple weeks. But she sure likes how he likes to flirt with her! ;)
Monday, December 13, 2010
Not So Good
The rest of the day did not go so well. When I had called Dr. Prestridge's office they said that she would either call me or call us back to come in....We see her tomorrow at 11:30 a.m.
I didn't starve him, but kind of gave him a rest. Gave him his first food after therapy which was a 6 oz bottle around 3:30. He did GREAT! We threw in a few little yogurt melts and no problems. A few coughs, but nothing that concerned me.
Supper, however, was a completely different story. I mashed up some potatoes that Cindy had made and yeah...not so good. The first bite, choke! He gagged and spit it back up so I gave him a break and we tried a second bite....CHOKE! Seriously?! Then he gagged and gagged and gagged! He gagged so much after choking that he threw up multiple times!
I cut off the potatoes and brought out some babyfood bananas and...he did fine! Did some of those and then tried the potatoes again...and fine...however, once we were all done eating...Choke and gag! So we just hung out!
He was starting to get a little fussy so I thought I'd try another bottle and he did awesome! Only one cough and we were asleep! He's been pretty good since.
Ugh!!! I am so frustrated. Jen and I are anxious to see what Dr. P has to say.
The exicting news for the day...we started to take steps!!! :) Just small ones, but we went back and forth from the recliner, to the end table and then to the footstool! So exciting, exciting.
Just wait and see what Dr. P says tomorrow. I am just hoping for sleep tonight.
I didn't starve him, but kind of gave him a rest. Gave him his first food after therapy which was a 6 oz bottle around 3:30. He did GREAT! We threw in a few little yogurt melts and no problems. A few coughs, but nothing that concerned me.
Supper, however, was a completely different story. I mashed up some potatoes that Cindy had made and yeah...not so good. The first bite, choke! He gagged and spit it back up so I gave him a break and we tried a second bite....CHOKE! Seriously?! Then he gagged and gagged and gagged! He gagged so much after choking that he threw up multiple times!
I cut off the potatoes and brought out some babyfood bananas and...he did fine! Did some of those and then tried the potatoes again...and fine...however, once we were all done eating...Choke and gag! So we just hung out!
He was starting to get a little fussy so I thought I'd try another bottle and he did awesome! Only one cough and we were asleep! He's been pretty good since.
Ugh!!! I am so frustrated. Jen and I are anxious to see what Dr. P has to say.
The exicting news for the day...we started to take steps!!! :) Just small ones, but we went back and forth from the recliner, to the end table and then to the footstool! So exciting, exciting.
Just wait and see what Dr. P says tomorrow. I am just hoping for sleep tonight.
Up in the Air
After a horrible, HORRIBLE night and taking food away from Chris...the night was horrible! He coughed and choked and cried and repeated that cycle about every 2-10 min. He had about an hour of pure rest. I was so scared last evening and for 4 hours contemplated whether or not I should take him to the ED. He would cough and gag and choke. He just laid on me limp and cried. At times he would cry and then maneuver so he could tilt his head back and get his airway open. As a nurse this scared me, as a mommy it terrified me.
He had therapy this morning at 9 and immediately Jen was assessing things to see if she could figure what triggered this episode. We didn't find anything in common that would red flag us.
We did therapy and of course, he did great! No episodes for Jen and she assured me that she believed my assessment and that the reason is was doing good today could very well likely be because we had him hooked up to the vitalstim machine! He didn't cough much after for Jen, but since we have left it's been almost a non-stop cough. I have him resting now.
Jen and I decided that we should talk to Dr. Prestridge. We both have a feeling we know what is coming...a feeding tube, which neither one of us want, but we sure don't want to keep his airway threatened like I feel it was last night. I was just so hopeful that we could put this to bed altogether.
I just sit here and wait for Dr. P to call or Dr. K. Put a call out to him too! Jen's kids see Dr. Kronberg as well so she and I have a lot of comfort and faith in him as moms and professionals.
Will update more when I know what else is going on. I'm hoping we test therapy for another week! At the same time though, I don't feel safe bringing him home with how he was last night.
He had therapy this morning at 9 and immediately Jen was assessing things to see if she could figure what triggered this episode. We didn't find anything in common that would red flag us.
We did therapy and of course, he did great! No episodes for Jen and she assured me that she believed my assessment and that the reason is was doing good today could very well likely be because we had him hooked up to the vitalstim machine! He didn't cough much after for Jen, but since we have left it's been almost a non-stop cough. I have him resting now.
Jen and I decided that we should talk to Dr. Prestridge. We both have a feeling we know what is coming...a feeding tube, which neither one of us want, but we sure don't want to keep his airway threatened like I feel it was last night. I was just so hopeful that we could put this to bed altogether.
I just sit here and wait for Dr. P to call or Dr. K. Put a call out to him too! Jen's kids see Dr. Kronberg as well so she and I have a lot of comfort and faith in him as moms and professionals.
Will update more when I know what else is going on. I'm hoping we test therapy for another week! At the same time though, I don't feel safe bringing him home with how he was last night.
Sunday, December 12, 2010
Set Back
It's been a rough few days for Mr. Christopher! Last Wednesday, Jen thinned his liquids just slightly and it seems like we've been fighting things every since and they've progressively gotten worse.
Wednesday the cough was back a bit and then Thursday and Friday it was back in full swing with relation to feedings and it sounds horrible. Friday night we had a choking incident and I told Jen that I wasn't too worrried because it didn't have much aftermath, until today. Let me rewind...Saturday night was horrible, he pretty much coughed and choked the whole night! It was horrible. We didn't sleep much.
Today didn't get any better. We had Chicken casserole for lunch and I tried the noodles, but he choked on those, so I switched to thickened baby food, went a little better. We had a rough afternoon, then at supper, he had thickened baby food again and milk from a cup and he choked on every almost every bite.
It's so frustrating. I've been in touch numerous times a day with Jen, our therapist, and we are both baffled. The poor baby sounds like he's hacking up a lung when he coughs! His poor little chest just rattles and he sounds so congested, but as far as my ear can tell, they are mostly clear...but they do sound a little gunky. He coughs so hard that he cries afterward.
I'm not going to feed him again until we see Jen in the morning, we may be visiting with Dr. Prestridge this week and most likely another swallow study to see if something has changed. He's getting very fatigued with his feedings and not sure as to why. I have a feeling we will be seeing Dr. Murphy as well.
This evening has been horrible, he continues to cough and choke with no stimulation whatsoever, so I know the stridor is coming. All of this that Dr. Murphy didn't want to happen again.
The hard thing about it is that we will do appts and tests this week and Tuesday I have to give up control and hope that things are figured out before I have to come home Tuesday night to work Wednesday. Chris will stay here and I will have family in Omaha take him to therapy and then other family meet them halfway on the highway to get him home.
Not that he won't be in great hands, but it worries me because I can't control his intake and monitor his every move...moreso every breath and swallow. We are still on that fine line with a feeding tube and tonight I'm not very hopeful that it is compeletely out of the picture.
The next couple days will be the tell all!
Wednesday the cough was back a bit and then Thursday and Friday it was back in full swing with relation to feedings and it sounds horrible. Friday night we had a choking incident and I told Jen that I wasn't too worrried because it didn't have much aftermath, until today. Let me rewind...Saturday night was horrible, he pretty much coughed and choked the whole night! It was horrible. We didn't sleep much.
Today didn't get any better. We had Chicken casserole for lunch and I tried the noodles, but he choked on those, so I switched to thickened baby food, went a little better. We had a rough afternoon, then at supper, he had thickened baby food again and milk from a cup and he choked on every almost every bite.
It's so frustrating. I've been in touch numerous times a day with Jen, our therapist, and we are both baffled. The poor baby sounds like he's hacking up a lung when he coughs! His poor little chest just rattles and he sounds so congested, but as far as my ear can tell, they are mostly clear...but they do sound a little gunky. He coughs so hard that he cries afterward.
I'm not going to feed him again until we see Jen in the morning, we may be visiting with Dr. Prestridge this week and most likely another swallow study to see if something has changed. He's getting very fatigued with his feedings and not sure as to why. I have a feeling we will be seeing Dr. Murphy as well.
This evening has been horrible, he continues to cough and choke with no stimulation whatsoever, so I know the stridor is coming. All of this that Dr. Murphy didn't want to happen again.
The hard thing about it is that we will do appts and tests this week and Tuesday I have to give up control and hope that things are figured out before I have to come home Tuesday night to work Wednesday. Chris will stay here and I will have family in Omaha take him to therapy and then other family meet them halfway on the highway to get him home.
Not that he won't be in great hands, but it worries me because I can't control his intake and monitor his every move...moreso every breath and swallow. We are still on that fine line with a feeding tube and tonight I'm not very hopeful that it is compeletely out of the picture.
The next couple days will be the tell all!
Tuesday, December 07, 2010
Perfect Night
We are done with 4 treatments now. The plan is to keep doing the 3 day a week treatments until the end of the year to use as many of our days as we can. Then at the end of that we will take a break until Spring. His thickening will be whatever he is on at our lost treatment.
Monday night we had a BEAUTIFUL night!! No coughing, choking, congestion, drowning sounds...just sweet baby purrs of sleep. He hasn't slept that well in such a long time. I'm so excited!!! Ever mile that we drive up and down the road for therapy is worth it.
We finished our 4th treatment today and he did good. Jen was able to thin his liquids slightly and he did good with them. He is loving drinking milk out of an open cup. He doesn't want to waste his time with the sippy cups. Fine by me!
Three more weeks of therapy and the last 2 the big boys will be able to come with me and Jason will be with us the final one. Our next 10 days is very, very busy. With Christmas celebrations, birthday parties, therapy and work.
My biggest prayer is that my car starts in the morning...it's not working right now! Ugh!
Monday night we had a BEAUTIFUL night!! No coughing, choking, congestion, drowning sounds...just sweet baby purrs of sleep. He hasn't slept that well in such a long time. I'm so excited!!! Ever mile that we drive up and down the road for therapy is worth it.
We finished our 4th treatment today and he did good. Jen was able to thin his liquids slightly and he did good with them. He is loving drinking milk out of an open cup. He doesn't want to waste his time with the sippy cups. Fine by me!
Three more weeks of therapy and the last 2 the big boys will be able to come with me and Jason will be with us the final one. Our next 10 days is very, very busy. With Christmas celebrations, birthday parties, therapy and work.
My biggest prayer is that my car starts in the morning...it's not working right now! Ugh!
Monday, December 06, 2010
Like Us Better
We celebrated the Feast of St. Nick on Sunday night at our house. I usually put a dollar and a couple pieces of candy in their shoes. I had no candy, no dollars, but had a Wii game so I sat it next to their shoes.
Andrew ran in to tell me this a.m. and I said...that's not fair, we only got Candy...he goes...He likes us more! :)
Oh Drew!
Andrew ran in to tell me this a.m. and I said...that's not fair, we only got Candy...he goes...He likes us more! :)
Oh Drew!
Therapy
Well, we started therapy last week and it was really hard to get passed not protecting the airway. That's what I was telling Jen, our awesome therapist, that as a nurse we are taught to protect the airway. Jen told me to bear with her and she would help get him better!
Chris had 2 treatments last week and I need to correct...he is not getting E stim, he is getting VitalStim. Jen puts electrodes on his neck and under his chin and then feeds him which is supposed to help retrain his tongue, neck and throat muscles to work properly. Eventually she will start to thin his liquids and see how it goes.
After 2 treatments Chris did not choke, or cough in regards to feeding for 72 hours and then we had periodically periods of coughing. He was ready for a treatment though by the time we got to Omaha. He did good, but ripped the electrodes off a couple times. He is loving drinking milk out of a cup!
Initially Jen had said 8 treatments, but she clarified that today that he will get treatments until he can drink thin liquids again. So...down we will come until Jen says we are good!
The bigger boys are surviving and excited that they get to come down this weekend for Christmas with Grandma and Papa K. They don't know they will get to come down for 3 days with me!! :) I will surprise them I think. We will do that for 2 weeks. They will be so excited!! :)
Chris had 2 treatments last week and I need to correct...he is not getting E stim, he is getting VitalStim. Jen puts electrodes on his neck and under his chin and then feeds him which is supposed to help retrain his tongue, neck and throat muscles to work properly. Eventually she will start to thin his liquids and see how it goes.
After 2 treatments Chris did not choke, or cough in regards to feeding for 72 hours and then we had periodically periods of coughing. He was ready for a treatment though by the time we got to Omaha. He did good, but ripped the electrodes off a couple times. He is loving drinking milk out of a cup!
Initially Jen had said 8 treatments, but she clarified that today that he will get treatments until he can drink thin liquids again. So...down we will come until Jen says we are good!
The bigger boys are surviving and excited that they get to come down this weekend for Christmas with Grandma and Papa K. They don't know they will get to come down for 3 days with me!! :) I will surprise them I think. We will do that for 2 weeks. They will be so excited!! :)
Saturday, November 27, 2010
Long Over Due
I should have had this post written days ago, but I feel like I've been driving in circles...which I kind of have been.
This weekend was exciting for our house...I baby that started crawling on all fours and pulling himself up to his feet more and more. He also started saying Mom. He would be playing in the living room and I would be in the back bedroom and I would here...Mom, Mom, Mom...the whole way down the hall on the way to see me! :)
Monday we hit Omaha for another swallow study, but this time at Bergan. I was introduced to a very vibrant Speech Therapist name nothing better than...Jen! :) She was so good with Chris. We did the test and sure enough...same results, but WAY different approach.
The test showed that his tongue was not working properly, meaning it was not "working" right. He is also pocketing things above his larynx, the part that protects his trachea and prevents aspiration. His is sluggish and therefore causing him to aspirate. The heavier foods do better for him.
Jen sat down with me...actually sat down on the floor with Chris...and talked things out. Her option was making the bottles thicker, giving his last bottle at 5 and then a bowel of cereal at bedtime and to try E stim therapy. Note: I didn't say feeding tube! :)
Our plan was to wait and see what Pulmonology said and go from there.
So...Pulmonology...Dr. Murphy said that the chest xrays look good and show no signs of injury to his lungs yet. His concern...of course...was to protect his lungs. He was willing to try the therapy and changes that Jen had set out, but said that if he has any more choking incidences he gets a feeding tube. We talked about an NG vs one that would go in to his belly (G button) and the G button would not be out. He said that if there is reflux that the G button is the way to go., but that was just talk. He said to let him know how he was doing on Friday.
So Jen suggested that we start the E Stim therapy today to help show improvement to ward off the feeding tube. Away we went at 1 p.m. She hooked him up, put on a pink hat to hold the electrodes on and we got a 45 min therapy out of him. So it was good. The downfall is that we have to stay another day in Omaha to repeat therapy tomorrow. Then it will be every Monday through Wednesday until...not sure on that answer yet.
This E Stim therapy is where they put electrodes under his chin and on his neck and it gets his muscles to contract and relax in patterns. During this they feed him and it is supposed to help train his tongue and throat to work better. We will do 6-8 treatments then re-evaluate.
I'm writing this tired so I apologize for anything that is unclear. I will probably have to re-read it tomorrow and write an addendum! :) But good things so far. The only bad thing is lots of travling, but we will get through it. Just pray for good weather for awhile.
This weekend was exciting for our house...I baby that started crawling on all fours and pulling himself up to his feet more and more. He also started saying Mom. He would be playing in the living room and I would be in the back bedroom and I would here...Mom, Mom, Mom...the whole way down the hall on the way to see me! :)
Monday we hit Omaha for another swallow study, but this time at Bergan. I was introduced to a very vibrant Speech Therapist name nothing better than...Jen! :) She was so good with Chris. We did the test and sure enough...same results, but WAY different approach.
The test showed that his tongue was not working properly, meaning it was not "working" right. He is also pocketing things above his larynx, the part that protects his trachea and prevents aspiration. His is sluggish and therefore causing him to aspirate. The heavier foods do better for him.
Jen sat down with me...actually sat down on the floor with Chris...and talked things out. Her option was making the bottles thicker, giving his last bottle at 5 and then a bowel of cereal at bedtime and to try E stim therapy. Note: I didn't say feeding tube! :)
Our plan was to wait and see what Pulmonology said and go from there.
So...Pulmonology...Dr. Murphy said that the chest xrays look good and show no signs of injury to his lungs yet. His concern...of course...was to protect his lungs. He was willing to try the therapy and changes that Jen had set out, but said that if he has any more choking incidences he gets a feeding tube. We talked about an NG vs one that would go in to his belly (G button) and the G button would not be out. He said that if there is reflux that the G button is the way to go., but that was just talk. He said to let him know how he was doing on Friday.
So Jen suggested that we start the E Stim therapy today to help show improvement to ward off the feeding tube. Away we went at 1 p.m. She hooked him up, put on a pink hat to hold the electrodes on and we got a 45 min therapy out of him. So it was good. The downfall is that we have to stay another day in Omaha to repeat therapy tomorrow. Then it will be every Monday through Wednesday until...not sure on that answer yet.
This E Stim therapy is where they put electrodes under his chin and on his neck and it gets his muscles to contract and relax in patterns. During this they feed him and it is supposed to help train his tongue and throat to work better. We will do 6-8 treatments then re-evaluate.
I'm writing this tired so I apologize for anything that is unclear. I will probably have to re-read it tomorrow and write an addendum! :) But good things so far. The only bad thing is lots of travling, but we will get through it. Just pray for good weather for awhile.
Tuesday, November 23, 2010
Repeat
I apologize. We came home from Omaha and I feel like I have been running in circles ever since.
We left Omaha with no feeding tube. The Dr. at Children's refused to put it in and Dr. Prestridge just said to call her on Monday and we would regroup. So, I came home with an aspirating baby. We were to put thick it (thickening agent) in his bottle to honey consistency. Once we got home however, he refused to take it. One feeding after fighting him took 90 minutes. He still sounded horrible. When he did drink he was choking and coughing and on Monday night it sounded like he was drowning.
I talked with Dr. Prestridge on Monday and she sent me in to Doc this a.m. She said it was okay to switch his bottles back to rice cereal instead of the thick it. Christopher loved this!
We pow wowed with Doc this a.m. and I shared all my frustrations and said that I'm okay if we don't put a feeding tube in him...beyond okay...but I don't like listening to my child sound like he's drowning after he drinks a bottle. He said that he and Dr. Prestridge were both baffled and he would chat with her and see what she said.
Dr. P called this afternoon and we are back to Omaha next week for Pulmonology and another swallow study, but at Bergan. We will see what that brings.
He hasn't been himself since we came home. We still have our smiles and our silly faces, but we are attached to Mom's side or anybody that will hold him. They gave him milk of magnesia Saturday in the hospital and he is still having loose stools. The poor kid smells like something died in him, but he may have caught a little stomach bug as well.
One of the highlights of the weekend, if I haven't shared before, is that we made it up to our feet. He managed it in his crib in the hospital and has a couple times since, but we don't do as well with the couch.
Sunday night I had to share the exciting MRI news with Eric, the Physical Therapist that has been working with him. He was pleased.
In speaking with Doc this a.m. it sounds like both he and Dr. P aren't sure as to what is going on. We may get a trip back to the Neurologist to find out why we are having all these low muscle tone problems. The thing that doesn't make sense, doc said, is that it is both smooth muscle (GI) and skeletal muscle involved.
I better put a plugged in for the older boys as well. They are doing so good. Andrew, believe it or not is ready for a break from school. I think he is liking helping his uncle Tim and Papa and finding more fun in that.
Matt is still silly. He's working with Mariclaire three days a week and doing awesome. It amazes me what comes out of his mouth. He has some pretty funny lines. This weekend when I had to call and tell the boys that I was staying in Omaha with Chris, Andrew had a little meltdown with it, but then Matt got on the phone long enough to say..."I'm okay with it mom." Then he was off to his next endeavor.
We just sit and wait until Monday and then back down the highway we go! Looking forward to it though, turning it in to a Christmas Shopping Extravaganza with my sister and Tim's girlfriend! SUPER excited! :)
We left Omaha with no feeding tube. The Dr. at Children's refused to put it in and Dr. Prestridge just said to call her on Monday and we would regroup. So, I came home with an aspirating baby. We were to put thick it (thickening agent) in his bottle to honey consistency. Once we got home however, he refused to take it. One feeding after fighting him took 90 minutes. He still sounded horrible. When he did drink he was choking and coughing and on Monday night it sounded like he was drowning.
I talked with Dr. Prestridge on Monday and she sent me in to Doc this a.m. She said it was okay to switch his bottles back to rice cereal instead of the thick it. Christopher loved this!
We pow wowed with Doc this a.m. and I shared all my frustrations and said that I'm okay if we don't put a feeding tube in him...beyond okay...but I don't like listening to my child sound like he's drowning after he drinks a bottle. He said that he and Dr. Prestridge were both baffled and he would chat with her and see what she said.
Dr. P called this afternoon and we are back to Omaha next week for Pulmonology and another swallow study, but at Bergan. We will see what that brings.
He hasn't been himself since we came home. We still have our smiles and our silly faces, but we are attached to Mom's side or anybody that will hold him. They gave him milk of magnesia Saturday in the hospital and he is still having loose stools. The poor kid smells like something died in him, but he may have caught a little stomach bug as well.
One of the highlights of the weekend, if I haven't shared before, is that we made it up to our feet. He managed it in his crib in the hospital and has a couple times since, but we don't do as well with the couch.
Sunday night I had to share the exciting MRI news with Eric, the Physical Therapist that has been working with him. He was pleased.
In speaking with Doc this a.m. it sounds like both he and Dr. P aren't sure as to what is going on. We may get a trip back to the Neurologist to find out why we are having all these low muscle tone problems. The thing that doesn't make sense, doc said, is that it is both smooth muscle (GI) and skeletal muscle involved.
I better put a plugged in for the older boys as well. They are doing so good. Andrew, believe it or not is ready for a break from school. I think he is liking helping his uncle Tim and Papa and finding more fun in that.
Matt is still silly. He's working with Mariclaire three days a week and doing awesome. It amazes me what comes out of his mouth. He has some pretty funny lines. This weekend when I had to call and tell the boys that I was staying in Omaha with Chris, Andrew had a little meltdown with it, but then Matt got on the phone long enough to say..."I'm okay with it mom." Then he was off to his next endeavor.
We just sit and wait until Monday and then back down the highway we go! Looking forward to it though, turning it in to a Christmas Shopping Extravaganza with my sister and Tim's girlfriend! SUPER excited! :)
Saturday, November 20, 2010
Oops
I feel so horrible. My Aunt Jeanie reminded me that we have a lot that has turned out great and I didn't mean to sound ungrateful. The way things are, are SO much better than they could be!! We could be looking at spinal surgery or shunt placement or lots of other things. A feeding tube is the LEAST of it!
Not sure what the plan is today. We hope to find out soon! Again thanks for all the thoughts and prayers...and for my Aunt Jeanie pointing out that it sounded bad!!! I feel bad.
Not sure what the plan is today. We hope to find out soon! Again thanks for all the thoughts and prayers...and for my Aunt Jeanie pointing out that it sounded bad!!! I feel bad.
Failure
I have good news and I have not so hot news.
The GREAT news is...the MRI is NEGATIVE!!! No tethered cord, no hydrocephalus, just perfect baby boy spine and large head!! :) I'm sitting hear crying out of joy because I've had myself mentally prepared for the worst. Tonight in his crib, he pulled him self to his feet and was gleaming from ear to ear because he knew what he did! Once he was up, he couldn't maneuver his legs under him so he quickly fell, but HELLO! How awesome! I can't remember if I was on the phone with my Mom or MC, but I had to stop to cheer! :)
The not so hot news...the barium swallow did not go good at all today. They start the study off with different things covered in barium or mixed with barium...yummy huh? Made me gag just watching. Anyway, baby food went good...crackers good....thin liquids, minor fail...nectar thick liquids, minor fail...honey thick liquids, major fail. He took a total of an ounce and they quit because it was that evident that it was not going good.
Not gonna lie, I broke down immediately, was it the end of the world...no, but my concerns had been confirmed FINALLY! So, Mary (ST) and Tina (OT) (the same 2 I was frustrated with Wednesday) did awesome. They reassured me that there were steps to take now and that they were contacting Dr. Prestridge before they would let me leave.
Mary spoke with Dr. P and stated her concerns and recommendations and then Dr. P spoke with me. The options were placing a feeding tube down his nose and feeding him that way or not changing anything and see what happens. After discussing with her the constant antibiotic use and the fact that I feel it is progressively getting worse and that we are 3 hours away (not that Doc couldn't handle it) should this continue to get worse and something serious happens, the decision was made to place a nasogastric tube (a tube through his nose to his belly to feed him).
She said she wanted to talk with Dr. Kronberg and would call me back. She called me back and said that he was going to be admitted to Children's for NG placement. Away to the admitting desk we went.
We hit the floor and the hospitalist finally came and talked to us, went and looked some things up and then came back to discuss the plan of care. He said that at this time, he didn't feel the the need to place the feeding tube. According to the report, it was a "mild" aspiration and besides...he'd probably pull it out. I voiced my concerns and when he blew them off...I quit listening. All I could think about was that I could be home with my other boys and why the h*** were we here then! My other thought...Dr. P did call me from her cell...could I reach her at 8:30 p.m.? I didn't call her!
My thoughts since have included...whether a patient is 11 months (which he is today), 11 years or 80 years...the risk of pulling out the NG is the same. We have adult patient's remove them all the time! My other thought...mild or not he is STILL ASPIRATING!!! Why are we okay with the injury to his lungs? Seriously? I mean I have 2 other boys with lung problems, why not make it 3 right? WTH? Why don't we want to try to PREVENT this?
Do I want to put a tube down my baby's nose and feed him through it?...NO! Do I want him to risk having chronic lung problems when it could have been prevented...uh duh. It scares me to know what is happening when he drinks his bottle. I mean, he drinks it and right away you can hear him start to sound wet.
I spoke with Jess about this and the nurses working with him, all kind of agree with me...Why are we changing the plan of care, after admission? I guess I will just find out in the a.m.
What a trooper though through this week. He's started making a new face, it's this surprised look and then after he gives us a big cheeser grin!
I miss the big boys. I haven't seen them since Tuesday at 8 a.m. When I talked to Matt tonight he said...I'm okay with you staying Mom. I didn't even have to ask. Andrew on the other hand was bothered by it. I'm glad it's a holiday week next week and will have time with them!
My mother in law reminded me tonight that it was 1 year ago this week that I went into labor with Chris and was in the hospital in Omaha myself. I'm really starting to not like Thanksgiving!
The GREAT news is...the MRI is NEGATIVE!!! No tethered cord, no hydrocephalus, just perfect baby boy spine and large head!! :) I'm sitting hear crying out of joy because I've had myself mentally prepared for the worst. Tonight in his crib, he pulled him self to his feet and was gleaming from ear to ear because he knew what he did! Once he was up, he couldn't maneuver his legs under him so he quickly fell, but HELLO! How awesome! I can't remember if I was on the phone with my Mom or MC, but I had to stop to cheer! :)
The not so hot news...the barium swallow did not go good at all today. They start the study off with different things covered in barium or mixed with barium...yummy huh? Made me gag just watching. Anyway, baby food went good...crackers good....thin liquids, minor fail...nectar thick liquids, minor fail...honey thick liquids, major fail. He took a total of an ounce and they quit because it was that evident that it was not going good.
Not gonna lie, I broke down immediately, was it the end of the world...no, but my concerns had been confirmed FINALLY! So, Mary (ST) and Tina (OT) (the same 2 I was frustrated with Wednesday) did awesome. They reassured me that there were steps to take now and that they were contacting Dr. Prestridge before they would let me leave.
Mary spoke with Dr. P and stated her concerns and recommendations and then Dr. P spoke with me. The options were placing a feeding tube down his nose and feeding him that way or not changing anything and see what happens. After discussing with her the constant antibiotic use and the fact that I feel it is progressively getting worse and that we are 3 hours away (not that Doc couldn't handle it) should this continue to get worse and something serious happens, the decision was made to place a nasogastric tube (a tube through his nose to his belly to feed him).
She said she wanted to talk with Dr. Kronberg and would call me back. She called me back and said that he was going to be admitted to Children's for NG placement. Away to the admitting desk we went.
We hit the floor and the hospitalist finally came and talked to us, went and looked some things up and then came back to discuss the plan of care. He said that at this time, he didn't feel the the need to place the feeding tube. According to the report, it was a "mild" aspiration and besides...he'd probably pull it out. I voiced my concerns and when he blew them off...I quit listening. All I could think about was that I could be home with my other boys and why the h*** were we here then! My other thought...Dr. P did call me from her cell...could I reach her at 8:30 p.m.? I didn't call her!
My thoughts since have included...whether a patient is 11 months (which he is today), 11 years or 80 years...the risk of pulling out the NG is the same. We have adult patient's remove them all the time! My other thought...mild or not he is STILL ASPIRATING!!! Why are we okay with the injury to his lungs? Seriously? I mean I have 2 other boys with lung problems, why not make it 3 right? WTH? Why don't we want to try to PREVENT this?
Do I want to put a tube down my baby's nose and feed him through it?...NO! Do I want him to risk having chronic lung problems when it could have been prevented...uh duh. It scares me to know what is happening when he drinks his bottle. I mean, he drinks it and right away you can hear him start to sound wet.
I spoke with Jess about this and the nurses working with him, all kind of agree with me...Why are we changing the plan of care, after admission? I guess I will just find out in the a.m.
What a trooper though through this week. He's started making a new face, it's this surprised look and then after he gives us a big cheeser grin!
I miss the big boys. I haven't seen them since Tuesday at 8 a.m. When I talked to Matt tonight he said...I'm okay with you staying Mom. I didn't even have to ask. Andrew on the other hand was bothered by it. I'm glad it's a holiday week next week and will have time with them!
My mother in law reminded me tonight that it was 1 year ago this week that I went into labor with Chris and was in the hospital in Omaha myself. I'm really starting to not like Thanksgiving!
Thursday, November 18, 2010
Testing
We are in Omaha and having our testing done this week.
We had our swallow study done yesterday and I wasn't impressed. They stared at him eating a thickened bottle...which won't tell them anything....then said keep doing what you're doing. I was like seriously? Maybe they got something out of it but it was not conveyed to this mother. Then they said...we will see what Friday brings.
Today started off early as we had to be at the hospital by 7:30. They got him going and he played in the toy room, then played ball and around 9:15 they took him from me. He rode the bed back like a champ. Didn't even phase him.
Dr. Prestridge stopped in before the procedure and asked if we had any questions and I addressed his bowel issue and she said she'd check on it while he was out. She returned around 11:40 and said that everything in the EGD looked good. No signs of reflux and no apparent concerns. They did a biopsy, which is standard and she said that it may come back with some allergy cells. That darn "a" word may still sneak up on us!
We won't have any MRI results for a few days. The nurse in the CARES unit did encourage me to call tomorrow before we left town tomorrow. I hope that doesn't mean anything. So, that will be my first call.
We came back to the room and we both passed out immediately until about 5. Gotta love the 3 hour nap. He played like a maniac tonight and then 10 min later was out cold!
I miss my big boys. I can't wait to get home and hug them. I may have to plan something special for tomorrow night.
Thanks for all the prayers. We will get through whatever God has in store for us. I would however, take a hypermobility/low tone diagnosis however! :)
We had our swallow study done yesterday and I wasn't impressed. They stared at him eating a thickened bottle...which won't tell them anything....then said keep doing what you're doing. I was like seriously? Maybe they got something out of it but it was not conveyed to this mother. Then they said...we will see what Friday brings.
Today started off early as we had to be at the hospital by 7:30. They got him going and he played in the toy room, then played ball and around 9:15 they took him from me. He rode the bed back like a champ. Didn't even phase him.
Dr. Prestridge stopped in before the procedure and asked if we had any questions and I addressed his bowel issue and she said she'd check on it while he was out. She returned around 11:40 and said that everything in the EGD looked good. No signs of reflux and no apparent concerns. They did a biopsy, which is standard and she said that it may come back with some allergy cells. That darn "a" word may still sneak up on us!
We won't have any MRI results for a few days. The nurse in the CARES unit did encourage me to call tomorrow before we left town tomorrow. I hope that doesn't mean anything. So, that will be my first call.
We came back to the room and we both passed out immediately until about 5. Gotta love the 3 hour nap. He played like a maniac tonight and then 10 min later was out cold!
I miss my big boys. I can't wait to get home and hug them. I may have to plan something special for tomorrow night.
Thanks for all the prayers. We will get through whatever God has in store for us. I would however, take a hypermobility/low tone diagnosis however! :)
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