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.
Wednesday, December 29, 2010
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!! :)
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