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!! :)
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! :)
Monday, November 15, 2010
Reminding Myself
Last night I was grilling burgers and wasn't paying attention when I went to put the pepper on and opened the wrong in. Needless to say, one burger got a pepper bath. Matt was near me and I told him it was Andrew's burger and not to tell.
He said..."Don't worry mom, I won't."
It wasn't 20 min later Andrew comes in and says..."Mom why'd you put too much pepper on my burger."
When I went out to check on the burgers I hollared at Matt that he was a traitor! :) He said, I didn't tell Andrew. I could hear Jason laughing. Jason tells me that Matthew didn't.
Jason went on to explain that Matthew said outloud that I had put too much pepper on Andrew's burger and when Jason said something to him, Matthew told him that he didn't tell Andrew. He reminded himself OUTLOUD to not tell Andrew!
I don't know where this kid comes up with this stuff!
He said..."Don't worry mom, I won't."
It wasn't 20 min later Andrew comes in and says..."Mom why'd you put too much pepper on my burger."
When I went out to check on the burgers I hollared at Matt that he was a traitor! :) He said, I didn't tell Andrew. I could hear Jason laughing. Jason tells me that Matthew didn't.
Jason went on to explain that Matthew said outloud that I had put too much pepper on Andrew's burger and when Jason said something to him, Matthew told him that he didn't tell Andrew. He reminded himself OUTLOUD to not tell Andrew!
I don't know where this kid comes up with this stuff!
Long Week
I've spent the last 6 hours doing laundry, picking up, cleaning, rocking a baby, making arrangements and packing for the next 4 days. We have our tests this week and Jason reminded me to not pack for a year, but I have to be prepared.
We did tubes last Tuesday and Chris did amazing! He had no problem with the sedation, but it helped he only had to be down for about 20 min. When he came back to me though he looked so sad because he woke up without me. He quickly recovered. He's seemed to be tolerating the tubes well.
Friday night was a long night and he had a rough night with coughing and choking. He had a period of horrible breathing for about an hour. I sent he and Jason to the doc on Saturday morning and his lung sounds were clear. I am just super nervous for this week.
The weekend brought no improvement and actually I had to start making his bottles thicker. He's on so many meds. I'm not a medicator, but am doing it just to ward off evil spirits for this week. When I talked to Doc on Sunday, we both agreed that we are between a rock and a hard spot right now. We've waited so long for this MRI. We don't want it canceled because of his health, but his health isn't going to improve until we get answers from the MRI. We will see. It makes it even more nervous for the swallow study.
We will have the 2 swallow studies this week, the MRI and the EGD. I'm hoping that's it.
I'm worried about leaving the big boys, but they are in good hands and it's only for a couple days. The down side is we are to Grand Island Monday for a follow up and then the following week we are on to Pulmonology.
We did tubes last Tuesday and Chris did amazing! He had no problem with the sedation, but it helped he only had to be down for about 20 min. When he came back to me though he looked so sad because he woke up without me. He quickly recovered. He's seemed to be tolerating the tubes well.
Friday night was a long night and he had a rough night with coughing and choking. He had a period of horrible breathing for about an hour. I sent he and Jason to the doc on Saturday morning and his lung sounds were clear. I am just super nervous for this week.
The weekend brought no improvement and actually I had to start making his bottles thicker. He's on so many meds. I'm not a medicator, but am doing it just to ward off evil spirits for this week. When I talked to Doc on Sunday, we both agreed that we are between a rock and a hard spot right now. We've waited so long for this MRI. We don't want it canceled because of his health, but his health isn't going to improve until we get answers from the MRI. We will see. It makes it even more nervous for the swallow study.
We will have the 2 swallow studies this week, the MRI and the EGD. I'm hoping that's it.
I'm worried about leaving the big boys, but they are in good hands and it's only for a couple days. The down side is we are to Grand Island Monday for a follow up and then the following week we are on to Pulmonology.
Monday, November 08, 2010
Normal
I tell ya...I wish I could bottle everything that comes out of Matt's mouth.
Andrew is being very dramatic tonight, acting like he's sick and that he's overly worked. By the way, he hasn't done anything since he got home from school at noon. In his defense however, he is having breathing troubles today.
Anyway, Andrew finished his breathing treatment and then when I said to head outside, Andrew fell on the floor and pretended to be to sleep.
Matt's comment..."Act normal."
I still think it's hilarious! :)
Andrew is being very dramatic tonight, acting like he's sick and that he's overly worked. By the way, he hasn't done anything since he got home from school at noon. In his defense however, he is having breathing troubles today.
Anyway, Andrew finished his breathing treatment and then when I said to head outside, Andrew fell on the floor and pretended to be to sleep.
Matt's comment..."Act normal."
I still think it's hilarious! :)
Tubes Tuesday
I'm just now getting this down.
We were to have tubes put in our ears here on Thursday, but after I got to talking to one of the nurses and they heard everything we were doing/finding out, a red flag arose...Suprise suprise. She talked to the anesthetist and he said that he wouldn't feel comfortable because of his dysphagia there was a chance they wouldn't get him off the vent right away. He wanted him to be at a facility where this could be handled should he need it. He talked to Dr. Nabity and through the shear grace of his surgery scheduler, Carol, we are placing tubes tomorrow morning, super early!
I'm not gonna lie...I was very upset at first to think that we may have to prolong this. Dr. K had said that if we didn't get the tubes in and a source of infection cleared up, there could be chance that the MRI would be canceled and this Mama would be devastated if that happened.
The following week is the MRI date and we found out that Dr. Prestridge will be doing an EGD that same day, not sure if I shared that.
We were to have tubes put in our ears here on Thursday, but after I got to talking to one of the nurses and they heard everything we were doing/finding out, a red flag arose...Suprise suprise. She talked to the anesthetist and he said that he wouldn't feel comfortable because of his dysphagia there was a chance they wouldn't get him off the vent right away. He wanted him to be at a facility where this could be handled should he need it. He talked to Dr. Nabity and through the shear grace of his surgery scheduler, Carol, we are placing tubes tomorrow morning, super early!
I'm not gonna lie...I was very upset at first to think that we may have to prolong this. Dr. K had said that if we didn't get the tubes in and a source of infection cleared up, there could be chance that the MRI would be canceled and this Mama would be devastated if that happened.
The following week is the MRI date and we found out that Dr. Prestridge will be doing an EGD that same day, not sure if I shared that.
Thursday, November 04, 2010
Demons
Yesterday was a long day. I was on such a HIGH from Tuesday, but my sister...no offense Red...squashed and got me thinking about a disorder that it COULD be. No diagnosis yet, but the more I talk to physicians, the harder it is to not worry about what we will find in the MRI.
We were to see Dr. Murphy yesterday, but he had an emergency or something so we will see him Nov. 30. We also stopped in to see our good friend Dr. Kronberg. I know only a couple know him, but I love how excited he gets over seeing if the children are meeting their milestones. It's like they are his children/grandchildren every time.
When he entered the room he checked if Chris would recognize his name, give him a social smile and follow what he was doing...yes, yes and yes! So then Dr. K got excited and was like..."That's so GOOD!" He checked his hearing, fine motor skills and some of his reflexes. Again, check, check and check! He was super excited again. Then he listened to him and confirmed that again...another ear infection, and that his lungs sounded like crap. He also affirmed my concern of getting him better so this MRI doesn't get canceled.
To prevent that we have to be on an antibiotic until after the MRI, then also Prilosec because in case there is some reflux, he doesn't want to risk him aspirating it and him getting sick, then also neb treatments.
He also said after he looked him over, that before coming in to the room he was nervous as to what he was going to find, but after seeing him he was reassured. He also told me that we need to move to Omaha. I laughed and said funny...but he said he was serious this time. He tells us this evertime he sees us. I stated that it wasn't an option and he said that I had to guarentee him then that we would make sure we got to all of our appointments. he said coming in to the winter months, we have to guarentee that we will make it to all our appointements. he stated that if there is an impending storm or A snowflake flies to hit the highway should we have an upcoming appointment. I wasn't thinking straight enought to ask why.
We had to do a chest xray and xrays of his hips. Not sure why the hips, but they both turned out okay! YAY! He did say however, that he has lots of stool present in him. This means that although he has a bowel movment every day, he is not emptying. I asked why and Dr. K said not for sure, but it is another sign pointing to a tethered cord.
Dr. Nabity's office called yesterday too and we will put tubes in next Thursday here in O'Neill. This will help us get better for the MRI. I spoke with Dr. Prestridge's office today and he will have an EGD (upper scope) on the 18th after the MRI at 11.
We had PT today and Eric was very happy with our progress over the last 2 weeks. He's getting very daring and can't get to standing yet, but when you stand him up, he tries to one hand it and can stand longer and longer.
I was lucky last night when I got home that my best friend...Big Matt..came up and was here to hang out with me. I was just kind of down. I know none of this is life threatening and things could totally be worse, but it goes back to the thinking that you have this normal healthy baby and it's all kind of falling apart. I just keep reassuring myself...in the words of Grandpa Shoemaker...everything will be just fine. And like someone else said...I need to stop dreaming of demons...but it's hard.
We were to see Dr. Murphy yesterday, but he had an emergency or something so we will see him Nov. 30. We also stopped in to see our good friend Dr. Kronberg. I know only a couple know him, but I love how excited he gets over seeing if the children are meeting their milestones. It's like they are his children/grandchildren every time.
When he entered the room he checked if Chris would recognize his name, give him a social smile and follow what he was doing...yes, yes and yes! So then Dr. K got excited and was like..."That's so GOOD!" He checked his hearing, fine motor skills and some of his reflexes. Again, check, check and check! He was super excited again. Then he listened to him and confirmed that again...another ear infection, and that his lungs sounded like crap. He also affirmed my concern of getting him better so this MRI doesn't get canceled.
To prevent that we have to be on an antibiotic until after the MRI, then also Prilosec because in case there is some reflux, he doesn't want to risk him aspirating it and him getting sick, then also neb treatments.
He also said after he looked him over, that before coming in to the room he was nervous as to what he was going to find, but after seeing him he was reassured. He also told me that we need to move to Omaha. I laughed and said funny...but he said he was serious this time. He tells us this evertime he sees us. I stated that it wasn't an option and he said that I had to guarentee him then that we would make sure we got to all of our appointments. he said coming in to the winter months, we have to guarentee that we will make it to all our appointements. he stated that if there is an impending storm or A snowflake flies to hit the highway should we have an upcoming appointment. I wasn't thinking straight enought to ask why.
We had to do a chest xray and xrays of his hips. Not sure why the hips, but they both turned out okay! YAY! He did say however, that he has lots of stool present in him. This means that although he has a bowel movment every day, he is not emptying. I asked why and Dr. K said not for sure, but it is another sign pointing to a tethered cord.
Dr. Nabity's office called yesterday too and we will put tubes in next Thursday here in O'Neill. This will help us get better for the MRI. I spoke with Dr. Prestridge's office today and he will have an EGD (upper scope) on the 18th after the MRI at 11.
We had PT today and Eric was very happy with our progress over the last 2 weeks. He's getting very daring and can't get to standing yet, but when you stand him up, he tries to one hand it and can stand longer and longer.
I was lucky last night when I got home that my best friend...Big Matt..came up and was here to hang out with me. I was just kind of down. I know none of this is life threatening and things could totally be worse, but it goes back to the thinking that you have this normal healthy baby and it's all kind of falling apart. I just keep reassuring myself...in the words of Grandpa Shoemaker...everything will be just fine. And like someone else said...I need to stop dreaming of demons...but it's hard.
Tuesday, November 02, 2010
answers...Answers...ANSWERS...YAY!!!
Today was our much anticipated GI (gastrointestinal) appointment. I'm not gonna lie...was a little concerned when a med student came in first, but gave him the benefit of the doubt, so we ran through the gamut of what has been happening. He was so good with him. Then Dr. Prestridge came in and at first was in the whole...I'm gonna teach this kid something mode, but soon relaxed and confirmed everything that I was having concerns about!
First the choking...She asked how vocal he was and I said he says a couple words, but not very often and doesn't chatter much. But then I told her that I attributed it to his ears because we've been having problems and explained that Matt had the same issues. Then she asked about other foods and I said...no just his bottle. She then explained that the muscles that you use to talk are the same muscles you use to swallow. I'm sure I learned that in nursing school, but I filed that one a way for some day far far away! :)
Second hard stools...I didn't even know that she would touch on this today. Yes, I know she is GI, but i was focusing on the choking. She then asked about the MRI and why we were looking at the spine...stated that they were questioning a tethered cord or tumor. I then learned that if the anus will pucker then you can usually rule out a tethered cord, but if it doesn't, it is still a good question. She looked at that and his was slow but it puckered. So she said she would be intereseted to see what the MRI would bring.
Plan...so the plan is to keep the MRI. Dr. Prestridge is anxious to see what both the head and spine tell us. Not gonna lie...this makes me a little nervous, but it will be good. We have to thicken his milk with rice cereal and then possibly do a swallow study Nov. 17. Find out that for sure tomorrow. Then if she can arrange it, she wants to do an upper scope the day of his MRI to make sure there is nothing major.
I like this progress. I feel like we finally have a path to follow and are heading in a direction rather than just being in limbo. We drank our first thickened bottle tonight with no choking. I was in tears I was so excited!!!
Now, just 2 more weeks til the MRI. I'm so emotionally drained tonight.
First the choking...She asked how vocal he was and I said he says a couple words, but not very often and doesn't chatter much. But then I told her that I attributed it to his ears because we've been having problems and explained that Matt had the same issues. Then she asked about other foods and I said...no just his bottle. She then explained that the muscles that you use to talk are the same muscles you use to swallow. I'm sure I learned that in nursing school, but I filed that one a way for some day far far away! :)
Second hard stools...I didn't even know that she would touch on this today. Yes, I know she is GI, but i was focusing on the choking. She then asked about the MRI and why we were looking at the spine...stated that they were questioning a tethered cord or tumor. I then learned that if the anus will pucker then you can usually rule out a tethered cord, but if it doesn't, it is still a good question. She looked at that and his was slow but it puckered. So she said she would be intereseted to see what the MRI would bring.
Plan...so the plan is to keep the MRI. Dr. Prestridge is anxious to see what both the head and spine tell us. Not gonna lie...this makes me a little nervous, but it will be good. We have to thicken his milk with rice cereal and then possibly do a swallow study Nov. 17. Find out that for sure tomorrow. Then if she can arrange it, she wants to do an upper scope the day of his MRI to make sure there is nothing major.
I like this progress. I feel like we finally have a path to follow and are heading in a direction rather than just being in limbo. We drank our first thickened bottle tonight with no choking. I was in tears I was so excited!!!
Now, just 2 more weeks til the MRI. I'm so emotionally drained tonight.
Friday, October 29, 2010
ENT
We had our ENT appointment yesterday and all went well. We aren't much further ahead, but small steps are greater than no steps.
Dr. Nabity put a scope down he's throat to see if there was something that was not letting his vocal cords or larynx or pharnynx work proper while he was eating. Fortunately that was working just fine. He stated that his sinuses are very congested and he swabbed him to see if there was something in there that was resistant to the antibiotics that he's already been on. He also said that when he scoped it that the esophagus wasn't red or irritated. He said that he would have expected that with reflux.
He did say however, that he has lots of fluid in his ears and stated that he would suggest putting tubes in his ears. I was in accordance with that and told him that if he didn't suggest it, I was going to beg for it since all the trouble we have had with Matt.
He questioned allergies and I stated that the other boys have them so i wouldn't be surprised. So we will get in to see Dr. Murphy as soon as we can possibly.
The positive was that since we are doing the MRI on Nov. 18 and they have to put him to sleep, Dr. Nabity stated that he was going to talk to Dr. Denman, the ENT that put Matt's tubes in, to see if he could put his tubes in on Nov. 18 while he's already asleep. I will know next week if this will happen or not.
So thatis where we sit as of now. We continue therapy and I feel things are improving. He likes to stand next to the couch and can stand there for a couple of minutes. He has to stand no matter what now. He knows he can so he has to do it.
Our next stop is GI! Not Grand Island, but gastrointestinal. :)
Dr. Nabity put a scope down he's throat to see if there was something that was not letting his vocal cords or larynx or pharnynx work proper while he was eating. Fortunately that was working just fine. He stated that his sinuses are very congested and he swabbed him to see if there was something in there that was resistant to the antibiotics that he's already been on. He also said that when he scoped it that the esophagus wasn't red or irritated. He said that he would have expected that with reflux.
He did say however, that he has lots of fluid in his ears and stated that he would suggest putting tubes in his ears. I was in accordance with that and told him that if he didn't suggest it, I was going to beg for it since all the trouble we have had with Matt.
He questioned allergies and I stated that the other boys have them so i wouldn't be surprised. So we will get in to see Dr. Murphy as soon as we can possibly.
The positive was that since we are doing the MRI on Nov. 18 and they have to put him to sleep, Dr. Nabity stated that he was going to talk to Dr. Denman, the ENT that put Matt's tubes in, to see if he could put his tubes in on Nov. 18 while he's already asleep. I will know next week if this will happen or not.
So thatis where we sit as of now. We continue therapy and I feel things are improving. He likes to stand next to the couch and can stand there for a couple of minutes. He has to stand no matter what now. He knows he can so he has to do it.
Our next stop is GI! Not Grand Island, but gastrointestinal. :)
Monday, October 25, 2010
Hot Stuff
We are one week closer to our MRI. We had our first PT appointment last week and have been working on out exercises. Papa Shoe built us a box to utilize to get up and down and Grandma Shoe bought us a ball to stand up next to, which helps us utilize our muscles to work on balance. We also work on getting on all fours and then sitting on our knees.
In just a few short days, I've noticed that we can stand better and don't fold at our waist in 30 secs. He loves to sit on his knees and thinks he's pretty hot stuff when he does it!
Thursday we have our ENT appointment and after being put on our 4th antibiotic I'm feeling some tubes coming on. We also had to start on breathing treatments for our nasty sounding lungs that I'm sure started about 10 days ago when he had a choking fit.
After the ENT doc we go visit the GI the following week for a couple days.
I'm hoping for answers to come soon.
The big boys got their Halloween costumes on Thursday and are EXCITED! Jason will be home and I'm not sure who's more excited, he or the boys.
In just a few short days, I've noticed that we can stand better and don't fold at our waist in 30 secs. He loves to sit on his knees and thinks he's pretty hot stuff when he does it!
Thursday we have our ENT appointment and after being put on our 4th antibiotic I'm feeling some tubes coming on. We also had to start on breathing treatments for our nasty sounding lungs that I'm sure started about 10 days ago when he had a choking fit.
After the ENT doc we go visit the GI the following week for a couple days.
I'm hoping for answers to come soon.
The big boys got their Halloween costumes on Thursday and are EXCITED! Jason will be home and I'm not sure who's more excited, he or the boys.
Friday, October 22, 2010
terminator
One of the boys' favorite shows is Billy the Exterminator and I'm not exactly sure what channel it's on, but I'm thinking its National Geographic or Discover. It's about this off the wall exterminator down in the south with long blonde hair that wears black leather.
Anywho, when Matt discovered it was on the other he went running downstairs to Andrew yelling...Billy the 'Terminator is on!
I guess we will work on that word in speech, but it was super cute! :)
Anywho, when Matt discovered it was on the other he went running downstairs to Andrew yelling...Billy the 'Terminator is on!
I guess we will work on that word in speech, but it was super cute! :)
Thursday, October 21, 2010
Wild Things
I spent the last couple days in Sioux Falls at the Avera Nurses Conference and althought it was a good conference, it meant time away from my babies. I'm getting used to this part time thing and lots of time home with the boys!
Their halloween costumes arrived tonight so they were even more excited! I have some dead skeleton pirate thing, a jailbird and a monkey! It's pretty cute! Absolutely wild though!
I think the hilight of Andrew's day was being surprised at school by his Uncle Tim with a John Deere tractor to show his classmates since he was the star student. Then he got his report card and it was very good...just gotta keep working on a couple things!
Chris just crawled all over me like a crazy boy and the other boys just romped on each other. THey have no school tomorrow so we shall see how the day transpires. I have a lot to get done around the house before our next trip to Omaha and yet no real free days to get it all done. Looking forward to Jason being home!
I do have to share a funny story. This summer, my brother in law, Luke, was trained to drive one of the buses for the school...ironically enough...it's the short bus! :) Everytime we drive by the school Matthew goes..."Who drives the short bus?" and waits for someone to respond..."LUKE!" Then he goes..."yep Luke drives the short bus!"
The irony to this whole thing that happens EVERY time we drive by is that Jason and I are laughing for a a reason that they don't understand! Gott a love it!
Oh yeah...another funny...Chris was tootin' tonight and after each time he passed gas he would giggle. Such a silly baby!
Their halloween costumes arrived tonight so they were even more excited! I have some dead skeleton pirate thing, a jailbird and a monkey! It's pretty cute! Absolutely wild though!
I think the hilight of Andrew's day was being surprised at school by his Uncle Tim with a John Deere tractor to show his classmates since he was the star student. Then he got his report card and it was very good...just gotta keep working on a couple things!
Chris just crawled all over me like a crazy boy and the other boys just romped on each other. THey have no school tomorrow so we shall see how the day transpires. I have a lot to get done around the house before our next trip to Omaha and yet no real free days to get it all done. Looking forward to Jason being home!
I do have to share a funny story. This summer, my brother in law, Luke, was trained to drive one of the buses for the school...ironically enough...it's the short bus! :) Everytime we drive by the school Matthew goes..."Who drives the short bus?" and waits for someone to respond..."LUKE!" Then he goes..."yep Luke drives the short bus!"
The irony to this whole thing that happens EVERY time we drive by is that Jason and I are laughing for a a reason that they don't understand! Gott a love it!
Oh yeah...another funny...Chris was tootin' tonight and after each time he passed gas he would giggle. Such a silly baby!
Tuesday, October 19, 2010
CONFIRMATION!
I just watched the little stinker pull himself across the groom with is arms on his belly to then get where he wanted and then...SIT UP!!! Yes, he sat up on his own!!! :)
I'm so excited. SO EXCITED!!!!
I'm so excited. SO EXCITED!!!!
Exhausting day
Yesterday was an exhausting, frustrating, yet exciting day.
The days are always exhausting when I am up with Christopher all hours of the night and then have to get up and function during the day. I don't function well I will be straight forward! :)
But as I had been up at 4 a.m. with Chris and he spent the last hour choking after his bottle, I had enough! I emailed Doc and was upset. The way he eats and then chokes was not normal and I was just frustrated! As the day progressed, we landed ourself an appointment to see a GI doc in Omaha and then see ENT next week.
Our MRI remains the 18th of November.
It's all just exhausting and emotionally draining. We did PT yesterday and have things to work on now. And the exciting news is that he sat up on his own yesterday!! :) Just once and not sure how he did it, but he did it!!
So we get to sit and wait.
The days are always exhausting when I am up with Christopher all hours of the night and then have to get up and function during the day. I don't function well I will be straight forward! :)
But as I had been up at 4 a.m. with Chris and he spent the last hour choking after his bottle, I had enough! I emailed Doc and was upset. The way he eats and then chokes was not normal and I was just frustrated! As the day progressed, we landed ourself an appointment to see a GI doc in Omaha and then see ENT next week.
Our MRI remains the 18th of November.
It's all just exhausting and emotionally draining. We did PT yesterday and have things to work on now. And the exciting news is that he sat up on his own yesterday!! :) Just once and not sure how he did it, but he did it!!
So we get to sit and wait.
Thursday, October 14, 2010
Breathing
My poor Drew is not liking the weather. This part of the year is always hard for he and Matt, but for some reason or another, it isn't bothering Matt much. But my poor Drew is having trouble breathing. So out the nebulizer comes. He tries not to complain, but as I hear him wheeze across the room, I know it must be hard! I just wish there was more that I could do for him. We just need to get to cooler weather and not so much fluctuation!
Head Way
I gotta love warrior docs. I feel like we made some head way today!
Through my friend Amy that is an OT, one of our PTs here in town agreed to work with him until EDN starts. LOVE this! We start on Monday!
Then we also drew his lab today in hopes that if something is off, then we can move the MRI closer. Doc did talk with Dr. Wright today and said that it is a scheduling problem and that is the soonest that we can do the spine. I'm not sure why we could do the head tomorrow and the spine not until November...but whatever!!
He was such a little champ when we drew his lab. Kendra poked him and I gave him a big squeeze and he fought to get loose and once we sat him up, he was just like...what the hell people? And was content! What a champ!
So I'm happy with the progress. Besides, he has to get over this nasty sinus infection that he's had for weeks upon weeks. We've been on antibiotics and prednisone and nothing is improving. His lungs last night sounded like crap! I informed Jess that this is why I like adults...it's all more cut and dried...usually!
Through my friend Amy that is an OT, one of our PTs here in town agreed to work with him until EDN starts. LOVE this! We start on Monday!
Then we also drew his lab today in hopes that if something is off, then we can move the MRI closer. Doc did talk with Dr. Wright today and said that it is a scheduling problem and that is the soonest that we can do the spine. I'm not sure why we could do the head tomorrow and the spine not until November...but whatever!!
He was such a little champ when we drew his lab. Kendra poked him and I gave him a big squeeze and he fought to get loose and once we sat him up, he was just like...what the hell people? And was content! What a champ!
So I'm happy with the progress. Besides, he has to get over this nasty sinus infection that he's had for weeks upon weeks. We've been on antibiotics and prednisone and nothing is improving. His lungs last night sounded like crap! I informed Jess that this is why I like adults...it's all more cut and dried...usually!
Wednesday, October 13, 2010
School Day
Matt fell asleep on the bed with me this evening while I was watching TV. When Jason went to move him to his bed instead of lifting him up and putting him in his bed, he instead said...Get up Matt time for school.
Matt wearily walked out into the living room and sat on the couch and attempted to wake up. Jason told him to hurry up and get ready for school. After a couple seconds I told him that it was late and to had back to bed.
He did...like a Zombie! Jason thought it was HILARIOUS!
Matt wearily walked out into the living room and sat on the couch and attempted to wake up. Jason told him to hurry up and get ready for school. After a couple seconds I told him that it was late and to had back to bed.
He did...like a Zombie! Jason thought it was HILARIOUS!
Long Wait
I have nothing much new to post. Fall has set in at our house and until it stops going from 70 to 30 every day, the boy's lungs will keep fighting it. We had to pull out the nebulizer tonight! Gotta love allergies.
As far the neurologist front, nothing. I called the other day and they couldn't change things. I expressed that I was concerned that we were waiting 5 weeks and the nurse really couldn't explain much more than...well that is when they could get him in. I also voiced concern about waiting for his labs that long and that response was...You could bring him down and we could draw them. She then went on to explain that they were trying to prevent a poke, which I appreciate, but his thyroid level and other levels could be COMPLETELY out of wack by then. I doubt they will be, but you never know!
The Early Development Network won't touch him...or i should say...would prefer not to touch him until the MRI is done so they know what the diagnosis is. All of this leads to delay. Delay, delay, delay.
Today he has started to stand...granted it is for seconds, and is only with locking his knees, but he was upright and thought he was pretty big stuff! I tried some resistance exercises and he didn't resist. He does try to pull himself up though and that excites me. He made it up twice, but his legs have to be just so and something has to be in front of him so he can't slide.
So now...we wait. After some advice from Jess (sister-in-law), I will call omaha again tomorrow and ask to speak to Dr. Wright and voice my concerns again!
Patience...patience, I know...but I do not have patience! :)
I again keep reminding myself that he isn't fighting for his life, although it may be altered, he isn't fighting to stay alive. It is all in perspective these days as my co-worker's little man fights for his life and waits for a heart transplant. He's 1 month older than Chris.
As far the neurologist front, nothing. I called the other day and they couldn't change things. I expressed that I was concerned that we were waiting 5 weeks and the nurse really couldn't explain much more than...well that is when they could get him in. I also voiced concern about waiting for his labs that long and that response was...You could bring him down and we could draw them. She then went on to explain that they were trying to prevent a poke, which I appreciate, but his thyroid level and other levels could be COMPLETELY out of wack by then. I doubt they will be, but you never know!
The Early Development Network won't touch him...or i should say...would prefer not to touch him until the MRI is done so they know what the diagnosis is. All of this leads to delay. Delay, delay, delay.
Today he has started to stand...granted it is for seconds, and is only with locking his knees, but he was upright and thought he was pretty big stuff! I tried some resistance exercises and he didn't resist. He does try to pull himself up though and that excites me. He made it up twice, but his legs have to be just so and something has to be in front of him so he can't slide.
So now...we wait. After some advice from Jess (sister-in-law), I will call omaha again tomorrow and ask to speak to Dr. Wright and voice my concerns again!
Patience...patience, I know...but I do not have patience! :)
I again keep reminding myself that he isn't fighting for his life, although it may be altered, he isn't fighting to stay alive. It is all in perspective these days as my co-worker's little man fights for his life and waits for a heart transplant. He's 1 month older than Chris.
Tuesday, October 12, 2010
Darn Google
Thanks to my amazing best friend...AKA Google...I have had a few scares the last few days on top of worrying about the Chris stuff that is going on.
We had a patient that came in with a disorder that some of us nurses were unaware of, so to better our knowledge...we googled it! :)
In reading through the disorder, I learned about cafe au lait spots and after seek a picture...this was on Chris' abdomen. So again with the tears. This could be a marker for neurological defect, according to google. So I cried some more and worried. Then when in the ED at Children's on Sunday night...that story to come later...the doc said...why are you going to the neurolgist, because of the spot on his belly? The little voice in my head went....He just confirmed it, google was right, the neurologist appointment is going to be HORRIBLE in the morning.
WRONG!!! Dr. Wright stated that children need up to 5 of those spots for it to be a "deficit" related spot...otherwise...birthmark! :)
My other scare started with the same patient at work and having difficulty breathing. Chris is congested which is another thing he has always been....and he got to coughing and turned bright red, then blue. After a 1/2 dozen times of this, we ended up in the Children's Hospital ED. This over reacting mother was calmed down and probably looked like a moron. I just kept thinking, what if he does this while I'm sleeping? The Dr. in the ED...Dr. Tolo, was very nice and stated that he probably had a mucus plug and all the coughing up to getting seen, knocked it loose and he was now fine. So to bed we went!
Oy, not sure how many of those I can take! And that's just with one child!
We had a patient that came in with a disorder that some of us nurses were unaware of, so to better our knowledge...we googled it! :)
In reading through the disorder, I learned about cafe au lait spots and after seek a picture...this was on Chris' abdomen. So again with the tears. This could be a marker for neurological defect, according to google. So I cried some more and worried. Then when in the ED at Children's on Sunday night...that story to come later...the doc said...why are you going to the neurolgist, because of the spot on his belly? The little voice in my head went....He just confirmed it, google was right, the neurologist appointment is going to be HORRIBLE in the morning.
WRONG!!! Dr. Wright stated that children need up to 5 of those spots for it to be a "deficit" related spot...otherwise...birthmark! :)
My other scare started with the same patient at work and having difficulty breathing. Chris is congested which is another thing he has always been....and he got to coughing and turned bright red, then blue. After a 1/2 dozen times of this, we ended up in the Children's Hospital ED. This over reacting mother was calmed down and probably looked like a moron. I just kept thinking, what if he does this while I'm sleeping? The Dr. in the ED...Dr. Tolo, was very nice and stated that he probably had a mucus plug and all the coughing up to getting seen, knocked it loose and he was now fine. So to bed we went!
Oy, not sure how many of those I can take! And that's just with one child!
Neurologist
I must apologize that I haven't gotten back to many about this. The last few days seem like a blur. So, I will start at the beginning.
In Chris' well baby check ups, he head has always measured large. What can I say, all my children have large heads. Andrew's was 14 inches when he was born, if I remember correctly. For awhile, it was following the growth curve, so it wasn't as much of a concern, but then at his 9 month check up, it made a jump.
To add to it, he doesn't use his legs much. Yes, the little man rolls like a maniac around the room and gets into everything. I'm always amazed at what he can do from his belly, reaching 6 inches or so off the floor! Anyway, he doesn't like to use his legs. He doesn't stand much and when you try to get him to stand he just holds his legs up. Even when he is in his exersaucer/jumper he uses his hands to go in the circle.
Then he also was sweating perfusely at the oddest times. Often in the middle of the night and especially when he eats.
So, at his 9 month check up, with all of these concerns voiced, Doc. decided that it would be in his best interest to see a neurologist. I agreed.
At this point, I handled it well...until I showed up at Carhart's to talk to my mom...10 min later, and I lost it! In the middle of the store, I bawled and bawled and bawled and in between sobs I told my mom what was happening. This was the routine until about 3 days ago. That's when I was finally able to talk about it without crying.
At first our appointment was Nov. 8, but Doc was able to get that moved up to today, Oct. 11. So off we went to Omaha and met Dr. Wright, a very cheery and thorough doc who asked all sorts of questions, and brought my attention to things, that I never knew were related.
She said that she wasn't that concerned with his head, because after measuring our heads, his head circumfrence plotted out close to mine and Jason's. He's just gonna have big brains like his momma...or a lot of empty space, according to his father.
Then we spoke at length about use of his legs. I said it's been like that since day 1 and hadn't thought much of it until recently. I mean, I knew he wasn't like the older 2, but in a way chalked it up to being kiddo #3. What got me concerned was him not sitting up. He can sit up, but he can't go from a lying to sitting position, you have to put him in the sitting position. He will also not get on his hands and knees and if he does, it is briefly, for seconds. She also made notice that his legs flop, almost like he lacks muscle tone.
She then asked about his stooling habits and if his stools were hard, which they are and always have been...and then it clicked for me...was she questioning a form or something similar to spina bifida. I couldn't bare to ask...so I didn't. She also pointed out that in comparison to his hands, his feet are small. I had always thought his feet were HUGE!
So she concluded that she isn't concerned about the head...did I say that already, but the legs do have her concerned and we now have to MRI the spine to see if there is any tethering of the lower spine or a tumor that is present. We also need to contact early development to get him on a PT/OT regimen. She did state however that with the leg issue, it could just be inability to hold his weight, which is still below Drew, so maybe he needs to buck up! :)
I'm not sure that this has sank in yet. I just keep telling myself...what's the worst case scenario? He has to use a walker?...and a friend of mine has proven that this is manageable.
The good news is that he is on track cognitively, if not a little ahead said the neurologist. The bad news is the next MRI isn't until Nov. 18, which I am trying to see if we can change because I'm not sure my mental health can wonder about those things for the next 5 weeks. He will also have quite a bit of lab drawn at that time as well.
I need to thank everyone for their prayers and thoughts of encouragement and shoulders to cry on. It's not life threatening and we are very blessed to have a healthy boy, but it doesn't mean I don't worry.
In Chris' well baby check ups, he head has always measured large. What can I say, all my children have large heads. Andrew's was 14 inches when he was born, if I remember correctly. For awhile, it was following the growth curve, so it wasn't as much of a concern, but then at his 9 month check up, it made a jump.
To add to it, he doesn't use his legs much. Yes, the little man rolls like a maniac around the room and gets into everything. I'm always amazed at what he can do from his belly, reaching 6 inches or so off the floor! Anyway, he doesn't like to use his legs. He doesn't stand much and when you try to get him to stand he just holds his legs up. Even when he is in his exersaucer/jumper he uses his hands to go in the circle.
Then he also was sweating perfusely at the oddest times. Often in the middle of the night and especially when he eats.
So, at his 9 month check up, with all of these concerns voiced, Doc. decided that it would be in his best interest to see a neurologist. I agreed.
At this point, I handled it well...until I showed up at Carhart's to talk to my mom...10 min later, and I lost it! In the middle of the store, I bawled and bawled and bawled and in between sobs I told my mom what was happening. This was the routine until about 3 days ago. That's when I was finally able to talk about it without crying.
At first our appointment was Nov. 8, but Doc was able to get that moved up to today, Oct. 11. So off we went to Omaha and met Dr. Wright, a very cheery and thorough doc who asked all sorts of questions, and brought my attention to things, that I never knew were related.
She said that she wasn't that concerned with his head, because after measuring our heads, his head circumfrence plotted out close to mine and Jason's. He's just gonna have big brains like his momma...or a lot of empty space, according to his father.
Then we spoke at length about use of his legs. I said it's been like that since day 1 and hadn't thought much of it until recently. I mean, I knew he wasn't like the older 2, but in a way chalked it up to being kiddo #3. What got me concerned was him not sitting up. He can sit up, but he can't go from a lying to sitting position, you have to put him in the sitting position. He will also not get on his hands and knees and if he does, it is briefly, for seconds. She also made notice that his legs flop, almost like he lacks muscle tone.
She then asked about his stooling habits and if his stools were hard, which they are and always have been...and then it clicked for me...was she questioning a form or something similar to spina bifida. I couldn't bare to ask...so I didn't. She also pointed out that in comparison to his hands, his feet are small. I had always thought his feet were HUGE!
So she concluded that she isn't concerned about the head...did I say that already, but the legs do have her concerned and we now have to MRI the spine to see if there is any tethering of the lower spine or a tumor that is present. We also need to contact early development to get him on a PT/OT regimen. She did state however that with the leg issue, it could just be inability to hold his weight, which is still below Drew, so maybe he needs to buck up! :)
I'm not sure that this has sank in yet. I just keep telling myself...what's the worst case scenario? He has to use a walker?...and a friend of mine has proven that this is manageable.
The good news is that he is on track cognitively, if not a little ahead said the neurologist. The bad news is the next MRI isn't until Nov. 18, which I am trying to see if we can change because I'm not sure my mental health can wonder about those things for the next 5 weeks. He will also have quite a bit of lab drawn at that time as well.
I need to thank everyone for their prayers and thoughts of encouragement and shoulders to cry on. It's not life threatening and we are very blessed to have a healthy boy, but it doesn't mean I don't worry.
Monday, September 20, 2010
Great Day!
I got to thinking that I need to sit down every day and write what the boys have done, are up to or what they pulled off and got away with. However, I need to get it done before midnight! :)
Andrew amazes me every day. He wants to read and does his homework and school work well...when he's not in a hurry! He was so helpful today. He emptied the dishwasher and vacuumed the living room...granted I had to do half of both tasks, I didn't mind! And before you turn me in for child labor...he was compensated for his chores. He also helped me mow which made my day. It goes by WAY faster when there are 2 of us working on it. He was fantastic until the storm came through. He HATES storms. Needless to say...he's in my bed.
Matthew...what a silly boy! He's been my snuggler the last couple days. I'm not sure what's going on, unles Lily's arrival has affected his world as well. He wants to bad to be independent and to have the same things and responsibilities that Andrew does, but when asked to follow through on them he is very happy to regress! He ate hot lunch with Andrew today and believe it or not he ate it well. He is loving Mommy being home more.
Mr. Christopher. Talk about a kid with personality. He is so laid back and happy I'm not sure what to do with him. He was fine until Miss Lily came along and realized that Mommy is holding another baby! :) Now he has to keep me in his sight at all time. He doesn't say much, but when he can't see me I hear him say "Mom" and then when I come around the corner to praise him, I just get a grin from ear to ear and this look like..."What are you talking about?" He is so close to crawling. Right now he just kind of rolls back and forth on his stomach until he gets to where he wants to go...Needless to say, he can cover ground in no time flat!
I will try to keep this up. The boys love to read their Mom's thoughts about them! Until tomorrow, Sleep well my boys!
Andrew amazes me every day. He wants to read and does his homework and school work well...when he's not in a hurry! He was so helpful today. He emptied the dishwasher and vacuumed the living room...granted I had to do half of both tasks, I didn't mind! And before you turn me in for child labor...he was compensated for his chores. He also helped me mow which made my day. It goes by WAY faster when there are 2 of us working on it. He was fantastic until the storm came through. He HATES storms. Needless to say...he's in my bed.
Matthew...what a silly boy! He's been my snuggler the last couple days. I'm not sure what's going on, unles Lily's arrival has affected his world as well. He wants to bad to be independent and to have the same things and responsibilities that Andrew does, but when asked to follow through on them he is very happy to regress! He ate hot lunch with Andrew today and believe it or not he ate it well. He is loving Mommy being home more.
Mr. Christopher. Talk about a kid with personality. He is so laid back and happy I'm not sure what to do with him. He was fine until Miss Lily came along and realized that Mommy is holding another baby! :) Now he has to keep me in his sight at all time. He doesn't say much, but when he can't see me I hear him say "Mom" and then when I come around the corner to praise him, I just get a grin from ear to ear and this look like..."What are you talking about?" He is so close to crawling. Right now he just kind of rolls back and forth on his stomach until he gets to where he wants to go...Needless to say, he can cover ground in no time flat!
I will try to keep this up. The boys love to read their Mom's thoughts about them! Until tomorrow, Sleep well my boys!
Sunday, August 15, 2010
New Backpacks
School starts tomorrow and I got the boys new backpacks this year. Andrew didn't need one, but I got him a good one with the threat that he doesn't get another one til junior high.
As we were getting ready tonight for school in the a.m. I notice that Matt is franctically digging through his bag and so I asked him what he was looking for and he says..."My new phone."
He carries a toy phone with him most places so I thought I would clarify..."what phone."
His reply..."The phone that came with my bag. It's not in here. We have to take it back!"
There was a tag pointing out the media aspects of the bag with a picture of a phone on it!
As we were getting ready tonight for school in the a.m. I notice that Matt is franctically digging through his bag and so I asked him what he was looking for and he says..."My new phone."
He carries a toy phone with him most places so I thought I would clarify..."what phone."
His reply..."The phone that came with my bag. It's not in here. We have to take it back!"
There was a tag pointing out the media aspects of the bag with a picture of a phone on it!
Wednesday, March 03, 2010
Oh BOYS!
There are always a thousand things that I want to write down or blog real quick everyday, but since Chris has arrived, that doesn't happen so well! Today, just reminded me how fast the boys are growing up.
Andrew got his hair cut today and sat in the chair to get it cut and usually I just tell them to cut it short, but this time he wanted it cut this way, but not that way and this short on the side and medium short on the side. Then reminds me it's shot night (allergy shots) and then helps Grandma Shoe out at the paper. He then returns home to play outside for a bit to then help clean the living room and by this time...it is time for bed! I look at him and wonder where time has gone! He is getting so big!
Matthew...let me just sum him up by this...he comes up to me tonight and says...Mom, I want to go to China tomorrow! You can come too! I'm not sure where he comes up with this stuff. While Andrew was helping clean up the living room Matt bursts into a full out bawling session. I asked what the matter was and he informed me that he was baling and that Andrew has ruined his hayfield. Oy vey!
I know I'm gonna blink and then be celebrating Chris' first birthday! He's more and more smiley every day. He's just so content and laid back...for now! We are still dealing with the RSV and although the breathing treatments are getting fewer and further between, the nasty cough is still around and harsh. He coughs up nasty stuff and then chokes on it. He doesn't like when I go in with the little sucker to help him out! He's learning that things are going on when he's sleeping because he's starting to fight his sleep! All of thise before he hits 3 months!
Andrew got his hair cut today and sat in the chair to get it cut and usually I just tell them to cut it short, but this time he wanted it cut this way, but not that way and this short on the side and medium short on the side. Then reminds me it's shot night (allergy shots) and then helps Grandma Shoe out at the paper. He then returns home to play outside for a bit to then help clean the living room and by this time...it is time for bed! I look at him and wonder where time has gone! He is getting so big!
Matthew...let me just sum him up by this...he comes up to me tonight and says...Mom, I want to go to China tomorrow! You can come too! I'm not sure where he comes up with this stuff. While Andrew was helping clean up the living room Matt bursts into a full out bawling session. I asked what the matter was and he informed me that he was baling and that Andrew has ruined his hayfield. Oy vey!
I know I'm gonna blink and then be celebrating Chris' first birthday! He's more and more smiley every day. He's just so content and laid back...for now! We are still dealing with the RSV and although the breathing treatments are getting fewer and further between, the nasty cough is still around and harsh. He coughs up nasty stuff and then chokes on it. He doesn't like when I go in with the little sucker to help him out! He's learning that things are going on when he's sleeping because he's starting to fight his sleep! All of thise before he hits 3 months!
Monday, February 15, 2010
8 weeks
Wow...8 weeks...that seems crazy!!! I can't believe it!
Mr. Christopher went in for his check up today and weighs 11 pounds 10 oz and is 23 3/4 inches long! Although that seems like he is doing awesome...which he is...in comparison, Drew was 10 lbs at 2 weeks and I can't seem to find Matthew's!
Christopher woke up this morning smiling and giggling in reaction to those around him!!! He's such a laid back kiddo, but when he has his mind made up...WATCH OUT!
Mr. Christopher went in for his check up today and weighs 11 pounds 10 oz and is 23 3/4 inches long! Although that seems like he is doing awesome...which he is...in comparison, Drew was 10 lbs at 2 weeks and I can't seem to find Matthew's!
Christopher woke up this morning smiling and giggling in reaction to those around him!!! He's such a laid back kiddo, but when he has his mind made up...WATCH OUT!
Sunday, February 07, 2010
All worked up!
I put Chris in his swing tonight so I could get a couple things done before I needed to feed him one last time!
I looked over and his arms were flailing and he was huffing and puffing, looking off to the right! The minute his hand hit the toy giraffe that is on his swing...he calmed down...until he moved his hand that is! :)
Then the cycle began again!
I looked over and his arms were flailing and he was huffing and puffing, looking off to the right! The minute his hand hit the toy giraffe that is on his swing...he calmed down...until he moved his hand that is! :)
Then the cycle began again!
Monday, February 01, 2010
Plan B
Well...we lasted on formula until about 10:30 last night as Jason and I could take any more of hearing Chris scream after each bottle! This wasn't our baby! So we gave him a big bottle of breastmilk and 30 seconds later he was content and asleep on my lap. He woke up 90 min later and had another bottle of breastmilk, but then he slept for 6.5 hours!! That was awesome compared to the previous night of him screaming for hours at a time!
I called Dr. K's office today to report that we gave it 31 hours, but he was screaming after each bottle so we went back to breastmilk and if he had any more to say! I was able to report that his jaundice had lessened, but wasn't gone!
He called back and said that although it was good that it was lessening he wanted to try to do 1 4oz bottle a day, with optimal being 2! This was a little better, knowing I could have him calmed down by bedtime. However, he barely drinks 2 oz of formula at a time...how is my little man gonna eat 4? I mean, it's already bothering his tummy!
So, in tweaking his orders/suggestions, I figured we will do formula in the morning and I will still give him the 2 oz at a time because I don't need to make things worse for his tummy!
I just have to get to Friday! My goal is 8 oz of formula for him! That's what Dr. K wants...his delivery may just be slightly different!
I called Dr. K's office today to report that we gave it 31 hours, but he was screaming after each bottle so we went back to breastmilk and if he had any more to say! I was able to report that his jaundice had lessened, but wasn't gone!
He called back and said that although it was good that it was lessening he wanted to try to do 1 4oz bottle a day, with optimal being 2! This was a little better, knowing I could have him calmed down by bedtime. However, he barely drinks 2 oz of formula at a time...how is my little man gonna eat 4? I mean, it's already bothering his tummy!
So, in tweaking his orders/suggestions, I figured we will do formula in the morning and I will still give him the 2 oz at a time because I don't need to make things worse for his tummy!
I just have to get to Friday! My goal is 8 oz of formula for him! That's what Dr. K wants...his delivery may just be slightly different!
Sunday, January 31, 2010
Breastmilk vs Formula
I have busted my nuts these last 6 weeks...yes 6 weeks! Can you believe it?! :) Anyway, been working my tail off trying to get this breastfeeding thing to work and to have enough milk for Christopher. He's remained jaundiced and when at 5 weeks we took him to meet Dr. K...he was very alarmed by his color. He checked his bili and it was 12.2 and that's where it's been hanging out!
Dr. K was worried that his liver wasn't functioning right, but his direct bili was 0, so that was a good result and showed his liver was fine. He also did a CBC and although everything was fine, he was slightly anemic. So in true Dr. K fashion, he was worried that something else could be going on.
When he talked to me on Friday, he suggested putting him on formula for a couple days to see if the jaundice would go away and then he would know it was breastmilk jaundice! Although, I knew this worked, I wasn't too set on it! I pondered it Friday and thought...ya know...I'm just gonna keep nursing him because I've worked so hard to get it to work and I am doing this to help protect him against allergies or lessen them maybe!
When Dr. K called Saturday morning to check on him and discuss things again and expressed how worried he was and that he would probably do more testing if we didn't do the formula test just to make sure that he didn't have another hemolytic disease or something!
After crying to Jason about how frustrated I was that I had worked so hard and that I was scared to give it up because I was afraid he wouldn't go back to breast milk again, we decided that if he saved him pokes it was in Chris' best interest!
We started formula at 4 p.m. yesterday and let me just say, last night was hell! He doesn't like the formula, which yay for me in a way...boo for my sleeping pattern! He just screams at times. For 6 weeks, he has done not much more than whine or fuss for a couple minutes, but this is screaming! He's not content what so ever!
I feel horrible, but will be glad when this trial is done in the next few hours.
Dr. K was worried that his liver wasn't functioning right, but his direct bili was 0, so that was a good result and showed his liver was fine. He also did a CBC and although everything was fine, he was slightly anemic. So in true Dr. K fashion, he was worried that something else could be going on.
When he talked to me on Friday, he suggested putting him on formula for a couple days to see if the jaundice would go away and then he would know it was breastmilk jaundice! Although, I knew this worked, I wasn't too set on it! I pondered it Friday and thought...ya know...I'm just gonna keep nursing him because I've worked so hard to get it to work and I am doing this to help protect him against allergies or lessen them maybe!
When Dr. K called Saturday morning to check on him and discuss things again and expressed how worried he was and that he would probably do more testing if we didn't do the formula test just to make sure that he didn't have another hemolytic disease or something!
After crying to Jason about how frustrated I was that I had worked so hard and that I was scared to give it up because I was afraid he wouldn't go back to breast milk again, we decided that if he saved him pokes it was in Chris' best interest!
We started formula at 4 p.m. yesterday and let me just say, last night was hell! He doesn't like the formula, which yay for me in a way...boo for my sleeping pattern! He just screams at times. For 6 weeks, he has done not much more than whine or fuss for a couple minutes, but this is screaming! He's not content what so ever!
I feel horrible, but will be glad when this trial is done in the next few hours.
I don't think so!
For those who are around Andrew a lot, they know that he is quick to respond and always HAS to respond!
The other day we were on our way to Grandma Shoe's house and Matt was trying to ask me something as I was trying to back out of the driveway. I told him to hold on a minute and in the meantime Andrew attempted to answer and this was Matthew's response:
"Andrew, I'm talking to Mom! Is your name Mom? I don't think so!"
Where he got this, I'm not sure, but 4 days later I am still getting many chuckles out of it!
The other day we were on our way to Grandma Shoe's house and Matt was trying to ask me something as I was trying to back out of the driveway. I told him to hold on a minute and in the meantime Andrew attempted to answer and this was Matthew's response:
"Andrew, I'm talking to Mom! Is your name Mom? I don't think so!"
Where he got this, I'm not sure, but 4 days later I am still getting many chuckles out of it!
Tuesday, January 26, 2010
Rock-a-bye
Big Matt bought Christopher a new swing! Not only because he is an awesome best friend, but he's also Chris' godfather!
I was proud of myself when I was able to put it together. The downside is Andrew wanted to attempt the same thing and was way more help than I needed! We got it put together though with only one extra piece! Have no fear though, I did eventually figure out where that other piece went!
We did this all while Matt was with Aunt Claire! :) Needless to say...because of the new swing fascination, Matthew was in time out within 10 min of being home!
I still think Matt needs hearing aides, because the only time he hears me is when I talk loud! :)
I would also like to say...God bless the inventor of the baby swing! :)
I was proud of myself when I was able to put it together. The downside is Andrew wanted to attempt the same thing and was way more help than I needed! We got it put together though with only one extra piece! Have no fear though, I did eventually figure out where that other piece went!
We did this all while Matt was with Aunt Claire! :) Needless to say...because of the new swing fascination, Matthew was in time out within 10 min of being home!
I still think Matt needs hearing aides, because the only time he hears me is when I talk loud! :)
I would also like to say...God bless the inventor of the baby swing! :)
When I grow up!
Matthew has informed me today that he is going to be Batman when he grows up!
He did reassure me however, not to worry because he would still live with me!
He informed me that I would have to get a new bed for him because he would be bigger, but if I didn't want to he could just share a bed with me!!
I can't wait to share this story when he is 18! :)
He did reassure me however, not to worry because he would still live with me!
He informed me that I would have to get a new bed for him because he would be bigger, but if I didn't want to he could just share a bed with me!!
I can't wait to share this story when he is 18! :)
Monday, January 04, 2010
Chocolate vs Cocoa
This evening the boys were out sledding in our yard! When they hit the door Matt yells...
"Mom, we want hot cocoa!"
Andrew then informs him that it is not only called hot cocoa, but it is also called hot chocolate! They then proceeded to have a 10 min conversation on whether or not it should be called Hot cocoa or hot chocolate!
They ended up sticking with Matt calling it hot cocoa and Andrew calling it hot chocolate!
"Mom, we want hot cocoa!"
Andrew then informs him that it is not only called hot cocoa, but it is also called hot chocolate! They then proceeded to have a 10 min conversation on whether or not it should be called Hot cocoa or hot chocolate!
They ended up sticking with Matt calling it hot cocoa and Andrew calling it hot chocolate!
Astronauts
Andrew asked me tonight as we were getting home from school....
"Mom, how come when astronauts are walking toward the spaceship they are always walking in slow motion?"
I unfortunately didn't have an answer for him!
"Mom, how come when astronauts are walking toward the spaceship they are always walking in slow motion?"
I unfortunately didn't have an answer for him!
Sunday, January 03, 2010
God vs. Dog
We are sitting here eating lunch today and Andrew strikes up a conversation!
"Mom, you know how dog and God are the same?"
I gave him a sideways look and questioned where he was going with this!
"Yeah, if you turn God around it's dog and if you turn dog around it's God!"
Oh, the complex minds of a 6 year old! Love it!
"Mom, you know how dog and God are the same?"
I gave him a sideways look and questioned where he was going with this!
"Yeah, if you turn God around it's dog and if you turn dog around it's God!"
Oh, the complex minds of a 6 year old! Love it!
Church
Last night I made the decision that we are going to church as a family! We were getting ready and the boys were kind of whining that they didn't want to go and Matthew asked if Christopher was going to go and I said yes...
Matt's response...but Mom, he don't know how to pray!
Matt's response...but Mom, he don't know how to pray!
Saturday, January 02, 2010
Double Take
Please forgive me as I am sure that over the next few weeks as my hormones regulate, that you will get a lot of sappy, hormone balancing blogs, beginning with this one tonight!
I've known for the last 13 years that I've wanted to name a child Chris after...Chris obviously...but I would have to convince my other half of it! When we decided to give Christopher his name, Jason wanted to use Chris Eugene, which is exactly what my cousin's name was! I didn't care for the "Eugene" (Sorry aunt Cathy!) and I wanted my child to have it be partly his own as well...hence...Christopher!
Now, the weird part for me is when I hear Andrew call him Chris or even myself saying Chris, it's weird! Even typing it and watching as it comes out, I don't feel like "Chris" is his yet. He is very much a Christopher I know this and I don't doubt the name decision what-so-ever...especially when his dimples showed up the other day.
The hard part for me right now...keep in mind that I'm regulating hormones...is that even though it's been 13 years, "Chris" still belongs very much so with some still vivid memories! This including the last night I saw him at my confirmation...3 weeks before he died...goofing around and picking on my boyfriend at the time!! It also includes a very vivid memory of one heck of a croquet game which was the last time we were all together as a family with Chris and Beth.
And I know that in good time, the name will transition for me, but for right now, there are days it's hard to swallow! I was sitting in church tonight staring at my Christopher, with part of my heart wanting to keep this little family I have exactly like I have it, but not wanting the option of using the name Chris for the reason we did...does that make sense? I wish I had both of them!
I just remind myself that I still have the big Chris! He's very much alive in my thoughts and I'm sure some day in my Chris' actions! It's crazy how some of the things that transpired in my pregnancy and how his personality is so far that mimic his namesake!
I've known for the last 13 years that I've wanted to name a child Chris after...Chris obviously...but I would have to convince my other half of it! When we decided to give Christopher his name, Jason wanted to use Chris Eugene, which is exactly what my cousin's name was! I didn't care for the "Eugene" (Sorry aunt Cathy!) and I wanted my child to have it be partly his own as well...hence...Christopher!
Now, the weird part for me is when I hear Andrew call him Chris or even myself saying Chris, it's weird! Even typing it and watching as it comes out, I don't feel like "Chris" is his yet. He is very much a Christopher I know this and I don't doubt the name decision what-so-ever...especially when his dimples showed up the other day.
The hard part for me right now...keep in mind that I'm regulating hormones...is that even though it's been 13 years, "Chris" still belongs very much so with some still vivid memories! This including the last night I saw him at my confirmation...3 weeks before he died...goofing around and picking on my boyfriend at the time!! It also includes a very vivid memory of one heck of a croquet game which was the last time we were all together as a family with Chris and Beth.
And I know that in good time, the name will transition for me, but for right now, there are days it's hard to swallow! I was sitting in church tonight staring at my Christopher, with part of my heart wanting to keep this little family I have exactly like I have it, but not wanting the option of using the name Chris for the reason we did...does that make sense? I wish I had both of them!
I just remind myself that I still have the big Chris! He's very much alive in my thoughts and I'm sure some day in my Chris' actions! It's crazy how some of the things that transpired in my pregnancy and how his personality is so far that mimic his namesake!
Long Labor
Two weeks later, I am finally getting this memorialized, as if I need to because I'm pretty sure the whole experience in imbedded in my brain for the rest of eternity!
We went in on Dec. 18, for a cytotec induction with Mr. Christopher! He inserted one cytotec and contractions got going a little bit before 11 a.m.! They didn't start slow either, they started right off every 2-3 min apart! We used that and tried to get up with them and on the ball to ger me dilating! They stayed that close all day! Nicki Dougherty, the nurse that delivered me and helped deliver Matthew did everything in her power to help get this baby out, but he was stubborn and my dilation was slow!
Friday evening, we were still contracting, but a long way from baby...so much for each delivery gets quicker!
Around midnight - 1 a.m. the contractions began to slow down and spread and I was able to get some rest in preparation for the pitocin on Saturday morning! Amanda was good with keeping my pain meds in check so I could get good rest!
Saturday morning we were greeted by Jolene who had every intention of getting Chris to show up as soon as possible...again, this child had a mind of his own. Pit got started around 7:35 a.m. and shortly after contractions were in full swing again. It wasn't until around 9:30 that they were starting to really bother me though!
At 10 a.m. or around there, Wendell showed up to get my epidural in and after many attempts to put it in, because my back was so swollen and my husband almost passing out, I was able to rest for awhile.
The afternoon moved slowly and i was getting frustrated because I couldn't do anything because I had no use of my legs and I wasn't dilating at all it seemed. Around 5 p.m. Doc showed up and broke my water. I had so much fluid...it was all over the bed and the floor and still kept flowing out like a flippin river!!!
Dilation took off shortly after and around 7 p.m. Jolene started setting up for a delivery that we were sure that we were going to have by 8:30 p.m.! We shut my epidural off so I could feel the contractions...my request.
At 9 p.m. I was STILL a 9 and wasn't making any progress. I was starting to have this piercing pain in my right groin area after each contraction that hurt worse than the contraction so Wendell came back in to help me get comfortable, which he did a great job with. I was exhausted though. I was crying and tired and didn't know why I was crying and the only thing I could do was apologize for crying! Jason remained surprised that I was still able to cry so much.
Dr. Pete showed up around 10 and had me push a couple times to then have the truth be known as to why I was progressing so slow...Chris was positioned wrong! So now, with each contraction, I pushed and Dr. Pete tried to turn Chris. He was able to get him turned slightly after 45 min. of pushing and had hopes that he would just come now.
After another 45 min of pushing and Chris not budging what-so-ever...the decision was made to take him out via c-section. By this time it was 11:30, I was exhausted and could barely hold my own legs up any more and the piercing pain in my groin was still there, although the rest of my pain was under control.
Jason, my sister, Jolene and Dr. Pete had helped me through the longest 90 min. Dr. Pete even stayed at my bedside the entire time, holding my leg and watching Chris on the monitor! Jolene had a knee in her chest the entire time and I felt bad for it, but am pretty sure she may have been a little sore the next day! Red later told me that I was pulling on her bad wrist and Jason got what he deserved as he had got me in this predicament...HAHA!
After Dr. Pete left the room to get ready for the C-section, I lost it! I was terrified! I could feel Chris' head where I didn't think it was good! We were able to get it through my cervix, but he wouldn't budge any further! I was terrified...there were so many things going through my head that could go wrong or were already wrong!
Mariclaire was there instantly to dry my tears as well as Jason, Red and Red was calling dad to let him know the plan!
The c-section started and they got him out...but he didn't cry right away...I did! His 1 min apgar was 7 (3 points off) and I cried harder! That meant that there was something wrong...maybe not bad wrong, but something was off and I didn't know if it was for color, tone or breathing!!! He then started to whimper and finally cry...and I cried more...he was fine...then they called out his 5 min apgar...9!!! He was close to perfect (10!)!!!
Amanda and Jolene held him up and he was so long and handsome! He had some awesome markings on his head thanks to my pelvic bone and ischial spine, but he was fine! Red called it his Harry Potter scar because it looked like a lightening bolt, but was gone shortly after!!!
After everything had settled down I asked Dr. Pete if there was any chance he was coming out...I meant vaginally...Dr. Pete just laughed and Dr. Ptacek said...yeah...c-section!!
He was positioned, face up coming out towards my right thigh, rather than straight on! To top it off, the cord was wrapped around his neck, then underneath his arm and then wrapped around his body!
Once I got my hands on him, he was perfect! He looked just like his brothers and Dad was proud and so were his aunt, great-aunt and Papa Shoe...who all greeted him outside the operating room!
I couldn't ask for a better team to bring him into the world!!! Dr. Pete was a little crabby the next morning, but I chalked it up to only a few hours of sleep! I later found out that he didn't sleep much when he went home because it bothered him that he had to section me! I had a healthy baby...I didn't care too much! I just wouldn't have signed up voluntarily for a c-section!
Now, 2 weeks later, I still have the perfect baby and 2 great big boys and an amazing husband who is lacking sleep just as much as his wife! I just don't know that I'm ready to repeat all of this again any time soon!
We went in on Dec. 18, for a cytotec induction with Mr. Christopher! He inserted one cytotec and contractions got going a little bit before 11 a.m.! They didn't start slow either, they started right off every 2-3 min apart! We used that and tried to get up with them and on the ball to ger me dilating! They stayed that close all day! Nicki Dougherty, the nurse that delivered me and helped deliver Matthew did everything in her power to help get this baby out, but he was stubborn and my dilation was slow!
Friday evening, we were still contracting, but a long way from baby...so much for each delivery gets quicker!
Around midnight - 1 a.m. the contractions began to slow down and spread and I was able to get some rest in preparation for the pitocin on Saturday morning! Amanda was good with keeping my pain meds in check so I could get good rest!
Saturday morning we were greeted by Jolene who had every intention of getting Chris to show up as soon as possible...again, this child had a mind of his own. Pit got started around 7:35 a.m. and shortly after contractions were in full swing again. It wasn't until around 9:30 that they were starting to really bother me though!
At 10 a.m. or around there, Wendell showed up to get my epidural in and after many attempts to put it in, because my back was so swollen and my husband almost passing out, I was able to rest for awhile.
The afternoon moved slowly and i was getting frustrated because I couldn't do anything because I had no use of my legs and I wasn't dilating at all it seemed. Around 5 p.m. Doc showed up and broke my water. I had so much fluid...it was all over the bed and the floor and still kept flowing out like a flippin river!!!
Dilation took off shortly after and around 7 p.m. Jolene started setting up for a delivery that we were sure that we were going to have by 8:30 p.m.! We shut my epidural off so I could feel the contractions...my request.
At 9 p.m. I was STILL a 9 and wasn't making any progress. I was starting to have this piercing pain in my right groin area after each contraction that hurt worse than the contraction so Wendell came back in to help me get comfortable, which he did a great job with. I was exhausted though. I was crying and tired and didn't know why I was crying and the only thing I could do was apologize for crying! Jason remained surprised that I was still able to cry so much.
Dr. Pete showed up around 10 and had me push a couple times to then have the truth be known as to why I was progressing so slow...Chris was positioned wrong! So now, with each contraction, I pushed and Dr. Pete tried to turn Chris. He was able to get him turned slightly after 45 min. of pushing and had hopes that he would just come now.
After another 45 min of pushing and Chris not budging what-so-ever...the decision was made to take him out via c-section. By this time it was 11:30, I was exhausted and could barely hold my own legs up any more and the piercing pain in my groin was still there, although the rest of my pain was under control.
Jason, my sister, Jolene and Dr. Pete had helped me through the longest 90 min. Dr. Pete even stayed at my bedside the entire time, holding my leg and watching Chris on the monitor! Jolene had a knee in her chest the entire time and I felt bad for it, but am pretty sure she may have been a little sore the next day! Red later told me that I was pulling on her bad wrist and Jason got what he deserved as he had got me in this predicament...HAHA!
After Dr. Pete left the room to get ready for the C-section, I lost it! I was terrified! I could feel Chris' head where I didn't think it was good! We were able to get it through my cervix, but he wouldn't budge any further! I was terrified...there were so many things going through my head that could go wrong or were already wrong!
Mariclaire was there instantly to dry my tears as well as Jason, Red and Red was calling dad to let him know the plan!
The c-section started and they got him out...but he didn't cry right away...I did! His 1 min apgar was 7 (3 points off) and I cried harder! That meant that there was something wrong...maybe not bad wrong, but something was off and I didn't know if it was for color, tone or breathing!!! He then started to whimper and finally cry...and I cried more...he was fine...then they called out his 5 min apgar...9!!! He was close to perfect (10!)!!!
Amanda and Jolene held him up and he was so long and handsome! He had some awesome markings on his head thanks to my pelvic bone and ischial spine, but he was fine! Red called it his Harry Potter scar because it looked like a lightening bolt, but was gone shortly after!!!
After everything had settled down I asked Dr. Pete if there was any chance he was coming out...I meant vaginally...Dr. Pete just laughed and Dr. Ptacek said...yeah...c-section!!
He was positioned, face up coming out towards my right thigh, rather than straight on! To top it off, the cord was wrapped around his neck, then underneath his arm and then wrapped around his body!
Once I got my hands on him, he was perfect! He looked just like his brothers and Dad was proud and so were his aunt, great-aunt and Papa Shoe...who all greeted him outside the operating room!
I couldn't ask for a better team to bring him into the world!!! Dr. Pete was a little crabby the next morning, but I chalked it up to only a few hours of sleep! I later found out that he didn't sleep much when he went home because it bothered him that he had to section me! I had a healthy baby...I didn't care too much! I just wouldn't have signed up voluntarily for a c-section!
Now, 2 weeks later, I still have the perfect baby and 2 great big boys and an amazing husband who is lacking sleep just as much as his wife! I just don't know that I'm ready to repeat all of this again any time soon!
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