Dr. Downey,
Just giving you an update on Hyrum. Over the last few weeks, he has gained about 5 oz. of weight. Learned how to roll from his front to his back (only for toys...and when you aren't looking) Not only has he gained two bottom teeth, but his top front is now coming in. He loves food. He loves his Dad feeding him since Hyrum has learned that Daddy sneaks the "good stuff", He will eat anything at any temperature from his Dad. If it is dinner time, there is no way you can get him to drink from his bottle...he wants FOOD!! If he thinks he can get food than he will also not take his bottle. He also will sit on his own when he is on your lap. For some reason, he doesn't think he can sit on the floor.
For Christmas, he had the choice of playing with the toy or the wrapping paper he came in, and he always took the paper! It was much more fun! We also avoided most family parties. We only attended one large party, and my folks called and verified that everybody that was coming was indeed healthy. We also had a small party with John's parents before they went to the larger family parties. We really enjoyed that one on one with them, and it was good that we did it before and then didn't go ourselves ...we haven't been able to be around his parents since then, as they got really sick right after that.
After spending three weeks standing in lines at almost every store, I finally was rewarded with being able to purchase the Nintendo's new Wii(sounds like we). I don't know if you have seen one, but it is an interactive video game. I have never been a video game fan, but I could not resist the interactive, get your kids off the couch, and play video games. Hyrum will sit in his high chair for about an hour or so just watching his big sisters and brother playing their games.
He has had his first shot of Synagis, starting last Thursday. He will get one every month until March.
His big brother Karl is 4. Karl has started calling him by his full name, Hyrum John. "I love Hyrum John" or "Hyrum John is eating" or "Hyrum John is crying". Karl loves to lay beside Hyrum and play beside him. He is very content to play this way. I think that Karl is very patient, but looking forward to having his brother grow more and play and interact with him.
Hyrum has found his voice. He loves to babble a story. And thanks to Karl he loves to spit, especially while he talks...that gurgling sound is music to his ears! There has been more than once that John and I will hear him through the baby monitor singing himself to sleep...or taking his binky and hitting it against his mobile just for fun!
He has been dilating at a 13 mm for about 2 weeks. The last few days he has been very loose, even when he doesn't want me to dilate him. I was looking through my bag, I don't have a 14 mm. I think he needs at least another week (give or take some) on the 13 mm.
Today (Wednesday), he has officially taken his last dose of medication. I might be able to milk the container for another dose tonight (which I will try). I will let you know if there is any change in his diet habits or outputs! And of course, if he changes from our happy babbling little guy, I'll let you know also.
If he needs the surgery for his urinary tract, how long after this will we wait before we close up his stoma?
I have talked to my neighbor, Kent Bennion, who works in the NICU. He told me that so far(knocking on the wood of course) the RSV season has not been as bad as other years. I hope this continues. But we do whatever is best for Hyrum. And if he needs to go in, it is good to know that the season isn't as bad as it has been.
I'll keep you updated as we go along. I hope you had a Merry Christmas and the New Year will be better than last year!
Just giving you an update on Hyrum. Over the last few weeks, he has gained about 5 oz. of weight. Learned how to roll from his front to his back (only for toys...and when you aren't looking) Not only has he gained two bottom teeth, but his top front is now coming in. He loves food. He loves his Dad feeding him since Hyrum has learned that Daddy sneaks the "good stuff", He will eat anything at any temperature from his Dad. If it is dinner time, there is no way you can get him to drink from his bottle...he wants FOOD!! If he thinks he can get food than he will also not take his bottle. He also will sit on his own when he is on your lap. For some reason, he doesn't think he can sit on the floor.
For Christmas, he had the choice of playing with the toy or the wrapping paper he came in, and he always took the paper! It was much more fun! We also avoided most family parties. We only attended one large party, and my folks called and verified that everybody that was coming was indeed healthy. We also had a small party with John's parents before they went to the larger family parties. We really enjoyed that one on one with them, and it was good that we did it before and then didn't go ourselves ...we haven't been able to be around his parents since then, as they got really sick right after that.
After spending three weeks standing in lines at almost every store, I finally was rewarded with being able to purchase the Nintendo's new Wii(sounds like we). I don't know if you have seen one, but it is an interactive video game. I have never been a video game fan, but I could not resist the interactive, get your kids off the couch, and play video games. Hyrum will sit in his high chair for about an hour or so just watching his big sisters and brother playing their games.
He has had his first shot of Synagis, starting last Thursday. He will get one every month until March.
His big brother Karl is 4. Karl has started calling him by his full name, Hyrum John. "I love Hyrum John" or "Hyrum John is eating" or "Hyrum John is crying". Karl loves to lay beside Hyrum and play beside him. He is very content to play this way. I think that Karl is very patient, but looking forward to having his brother grow more and play and interact with him.Hyrum has found his voice. He loves to babble a story. And thanks to Karl he loves to spit, especially while he talks...that gurgling sound is music to his ears! There has been more than once that John and I will hear him through the baby monitor singing himself to sleep...or taking his binky and hitting it against his mobile just for fun!
He has been dilating at a 13 mm for about 2 weeks. The last few days he has been very loose, even when he doesn't want me to dilate him. I was looking through my bag, I don't have a 14 mm. I think he needs at least another week (give or take some) on the 13 mm.
Today (Wednesday), he has officially taken his last dose of medication. I might be able to milk the container for another dose tonight (which I will try). I will let you know if there is any change in his diet habits or outputs! And of course, if he changes from our happy babbling little guy, I'll let you know also.
If he needs the surgery for his urinary tract, how long after this will we wait before we close up his stoma?
I have talked to my neighbor, Kent Bennion, who works in the NICU. He told me that so far(knocking on the wood of course) the RSV season has not been as bad as other years. I hope this continues. But we do whatever is best for Hyrum. And if he needs to go in, it is good to know that the season isn't as bad as it has been.
I'll keep you updated as we go along. I hope you had a Merry Christmas and the New Year will be better than last year!
January 7
From Dr. Downey
Thanks for the update. I have had this date on my mind of course! I would like to see him sometime perhaps the end of Jan beginning of Feb. I can get a 14 dilator then if it is needed. I was thinking that maybe we should wait about 3 months off the suppression to see if he is going to have an infection. I am also thinking about getting another VUCG but have not decided that right now. It would be nice not to close the stoma before any other surgery down there but I am not sure how this will go-it is a little unpredictable. Why don't we plan on discussing this at the next visit unless he tells us otherwise! Thanks again.
To Dr. Downey
Yes, I was thinking that it was three months of being off the suppression before we (or more you) closed the stoma. He is still working on getting his front four teeth. Three have come in, but the forth is taking its sweet time!
From about yesterday afternoon, he has not been eating as much as normal...even of the solid foods, that he usually can never get enough of. He also will not let me put him down today. I am hoping this is all related to the final tooth. We will be seeing Dr. Conner tomorrow for his weight check, If he is still acting this way by then, I am thinking of talking to her about the possibility of the infection coming sooner than later.
I am hoping it is the tooth as I have somehow injured my knee and am in a leg brace, I am hoping to get in sooner than my appointment on Wednesday, as I am in a lot of pain. I am also not supposed to carry Hyrum since my balance is off...oh the joys of Motherhood, they never go away!
I will keep you posted! Sorry, no pictures today, as time and my mobility limits won't allow it!:)
From about yesterday afternoon, he has not been eating as much as normal...even of the solid foods, that he usually can never get enough of. He also will not let me put him down today. I am hoping this is all related to the final tooth. We will be seeing Dr. Conner tomorrow for his weight check, If he is still acting this way by then, I am thinking of talking to her about the possibility of the infection coming sooner than later.
I am hoping it is the tooth as I have somehow injured my knee and am in a leg brace, I am hoping to get in sooner than my appointment on Wednesday, as I am in a lot of pain. I am also not supposed to carry Hyrum since my balance is off...oh the joys of Motherhood, they never go away!
I will keep you posted! Sorry, no pictures today, as time and my mobility limits won't allow it!:)
January 8
Another quick update on Hyrum
1) We went in today for a weight check. Hyrum lost 1.2 oz over the last two weeks.:(
2) To help with this we are adding cooking oil (olive oil) to his foods...he likes the taste and is eating more hearty like!
3) Dr. Conner is also having us see Dr. Fifer up at PCMC for Hyrum's lack of sleeping
4) Hyrum can now sit up by himself on the floor with no help for about 60 sec. before he gets so excited he falls over:)
1) We went in today for a weight check. Hyrum lost 1.2 oz over the last two weeks.:(
2) To help with this we are adding cooking oil (olive oil) to his foods...he likes the taste and is eating more hearty like!
3) Dr. Conner is also having us see Dr. Fifer up at PCMC for Hyrum's lack of sleeping
4) Hyrum can now sit up by himself on the floor with no help for about 60 sec. before he gets so excited he falls over:)
January 10
To Downey
We saw Dr. Pfeffer today! She, like everybody else I have met, speaks very highly of you! You know you have a great surgeon on your side when you can't find a single person who says a negative remark or gives one of those "oh! That Dr." looks!
She is concerned enough about Hyrum's breathing and snoring that we will get to be involved in a sleep study. Upon looking at the back of his throat (You will have to read her report for the actual names), she is wondering if the roof of his mouth at the back is lower than it should be. She will be looking at this closer and possibly be getting Dr. Muntz involved if necessary (Do you know who is the best Dr for this?). As this is something new to me, we will also do research on what this will mean for Hyrum. I will be having the sleep study on Monday night the 14th and then a follow up on Wednesday the 30th. I will be seeing you in Provo the following day, the 31st.
I'm not sure which is worse, having a doctor appointment every day of the week or spending the whole week in the hospital...either way I don't get anything else done! But my 4-year-old loves going out and about, he has learned how to "convince me" to take him on a lunch date! (He cleans his bedroom and my Front room, where all of Hyrum's toys are)
You should be getting a copy of Dr. Pfeffer's notes. I would also enjoy knowing your thoughts on all of this in regards to Hyrum.
Thanks for all you do!
She is concerned enough about Hyrum's breathing and snoring that we will get to be involved in a sleep study. Upon looking at the back of his throat (You will have to read her report for the actual names), she is wondering if the roof of his mouth at the back is lower than it should be. She will be looking at this closer and possibly be getting Dr. Muntz involved if necessary (Do you know who is the best Dr for this?). As this is something new to me, we will also do research on what this will mean for Hyrum. I will be having the sleep study on Monday night the 14th and then a follow up on Wednesday the 30th. I will be seeing you in Provo the following day, the 31st.I'm not sure which is worse, having a doctor appointment every day of the week or spending the whole week in the hospital...either way I don't get anything else done! But my 4-year-old loves going out and about, he has learned how to "convince me" to take him on a lunch date! (He cleans his bedroom and my Front room, where all of Hyrum's toys are)
You should be getting a copy of Dr. Pfeffer's notes. I would also enjoy knowing your thoughts on all of this in regards to Hyrum.Thanks for all you do!
From Downey
Let me take a look at her report and I will email you back. She may not send it to me until after the sleep study. Dr. Muntz is a very good ENT Dr. I like all of them at PCMC and I do not believe that there is one who specializes in this type of problem. It is actually pretty common for them to deal with this. Thank you so much for the beautiful pictures and for sharing with me not only Hyrum's pictures but your family events in the pictures.
January 11
The last few times I have emailed, I made it simple on myself and sent you a copy of my email to Hyrum's surgeon Dr. Downey. He loves Hyrum and begs for constant updates also. At one of my office visits, after emailing him questions and happenings on Hyrum, Dr. Downey told me he was very sad and upset ( in a joking way) that I had forgotten to send pictures of Hyrum and if I send emails without pictures again, he may "forget" to respond. He also followed the statement up with how much Hyrum means to him personally and he has never felt so connected to any of his patients like he does with Hyrum. He told me how wonderful it is to see Hyrum in his home environment and not only when he has a hospital gown and many tubes and cords coming out of him!
To explain the following happenings: Hyrum is still not sleeping for more than 4 hours at a time. Every once in a while I get a bonus 5 hours, but not very often. He is also a very noisy sleeper. So his pediatrician, Dr. Conner, has sent him to a sleep doctor, Dr. Pfeffer. My visit is described below so I won't repeat that.
In the future, a good sign that you are receiving a BBC of my email to Dr. Downey is how I address the email. I usually try to put enough in the email that encompasses everything to keep you updated on his progress. He has lost about 1/2 of the weight that he gained through the holidays (I'm sure we all wish we could lose weight this fast!)
We are hoping for a slower week next week. I only have two days of Dr appointments (so far!)
Thanks for all you guys do! Mostly the keeping us in your prayers! And we love the letters of encouragement!
To explain the following happenings: Hyrum is still not sleeping for more than 4 hours at a time. Every once in a while I get a bonus 5 hours, but not very often. He is also a very noisy sleeper. So his pediatrician, Dr. Conner, has sent him to a sleep doctor, Dr. Pfeffer. My visit is described below so I won't repeat that.
In the future, a good sign that you are receiving a BBC of my email to Dr. Downey is how I address the email. I usually try to put enough in the email that encompasses everything to keep you updated on his progress. He has lost about 1/2 of the weight that he gained through the holidays (I'm sure we all wish we could lose weight this fast!)We are hoping for a slower week next week. I only have two days of Dr appointments (so far!)
Thanks for all you guys do! Mostly the keeping us in your prayers! And we love the letters of encouragement!
January 15
Well, This is what Hyrum looks like during a sleep study. The first two are of him before and the last two were afterward. This morning, I remembered why it is I moved Hyrum out of my room. I slept better the hour at home afterward than the entire night at the sleep study. Hyrum also is VERY excited to be home. He talked most of the way home at 6am and fell asleep about 10 minutes before we got home.
Last night as John was doing diaper duty, Hyrum 
peed for him. He was mildly concerned as it came out as a leaky faucet. This morning he gave me the same treatment (lucky for me he was in the tub) and Hyrum gave me a water fountain. So I'm not sure how much to worry about that. He has been peeing less than normal, but he also has been eating less than normal.
He still loves his solids (on some occasions he seems to not be getting enough), but his bottle is less than thrilling. During his awake times if I offer him a bottle with a scoop of nutramigen in it he will not eat for the entire time. I have offered him the bottle, he refuses to eat it so I warm up a bottle without the supplement and he still will not eat. It is one chance or you lose. So during his awake times, I just give him the bottle plain figuring that something is better than nothing. During the night hours while he is semi-sleeping than I give him a scoop of supplement and he downs the whole bottle. As for the day, he will only drink about 3 ounces...if I'm lucky, in a setting. He does not seem to be hungry or even any fussier...unless I push the issue and then he reminds me who is boss (and it is not me).
Well, hopefully, you will hear the result of the sleep study soon. Hyrum is being fussy this morning. So time to figure it out!
Well, hopefully, you will hear the result of the sleep study soon. Hyrum is being fussy this morning. So time to figure it out!
January 17
Yesterday I got a very interesting phone call from Dr. Pfeffer. She is the sleep doctor that did the sleep study on Hyrum. She was very concerned about Hyrum. She had never seen a patient with such grossly deformed adenoids. She gave me the phone number for Dr. Muntz, the ENT, at Primary Children's. She was going to send the referral letter to his office immediately. By the time I got a hold of them about 2 hours later, they had the referral waiting for me to call. Hyrum's oxygen level was also very low while he slept. It should be between 90-100%, Hyrum was in the very low 70's. Within an hour of talking to her, the home medical equipment place called to set up a time to come that very day to give Hyrum an oxygen producing box with a nasal cannula to sleep with. Surprisingly he actually left the cannula in while he slept last night.
So my hope to have only 1 or 2 surgeries this year has gone down as the number of surgeries has increased. I will know more on Monday when I see Dr. Muntz, but I thought I would update you with the little information that I do have.
I am glad to be getting answers to the various questions we have had about Hyrum. We are glad to have switched Pediatricians, this seems to have really helped us get more answers. We still have some unanswered, like why he is not gaining weight, but like the Dr., we hope that the answers will present themselves in due time as we solve some of the sideline mysteries.
We are still waiting for him to have his bladder infection. I am glad to have things hit one at a time. I just hope our luck continues that way...though it may be better to just "hit the foot" and get the pain over with instead of just "tapping the foot" constantly!
I will keep you posted as our roller coaster of 2008 is starting to gear up and move faster than I would care for it too!
So my hope to have only 1 or 2 surgeries this year has gone down as the number of surgeries has increased. I will know more on Monday when I see Dr. Muntz, but I thought I would update you with the little information that I do have.
I am glad to be getting answers to the various questions we have had about Hyrum. We are glad to have switched Pediatricians, this seems to have really helped us get more answers. We still have some unanswered, like why he is not gaining weight, but like the Dr., we hope that the answers will present themselves in due time as we solve some of the sideline mysteries.
We are still waiting for him to have his bladder infection. I am glad to have things hit one at a time. I just hope our luck continues that way...though it may be better to just "hit the foot" and get the pain over with instead of just "tapping the foot" constantly!
I will keep you posted as our roller coaster of 2008 is starting to gear up and move faster than I would care for it too!
January 21
To Dr. Downey
Hyrum visited with Dr. Muntz today. It has been decided that Hyrum needs his adenoids and his tonsils removed. I will be calling tomorrow (Tuesday) to set up the surgery date as they are not in today. I am wondering if we want to do anything with his diverticulum while he is in surgery. I talked briefly with Dr. Muntz about this, he should be contacting you about this. I just figure if he is going in for surgery, we mind as well get done as much as we can to keep the hospital stays at a minimum. I know you would want a VUCG done first. Let me know what you would prefer to do.
Thanks
Hyrum visited with Dr. Muntz today. It has been decided that Hyrum needs his adenoids and his tonsils removed. I will be calling tomorrow (Tuesday) to set up the surgery date as they are not in today. I am wondering if we want to do anything with his diverticulum while he is in surgery. I talked briefly with Dr. Muntz about this, he should be contacting you about this. I just figure if he is going in for surgery, we mind as well get done as much as we can to keep the hospital stays at a minimum. I know you would want a VUCG done first. Let me know what you would prefer to do.
Thanks
February 1
Dr. Downey,
I have been convincing myself all week that I am a paranoid mom. There have been little things, weird things, that I by themselves seem nothing. But as I talk to John (my hunny) and tell him everything, he suggested I just run it past you.
So, Hyrum has had goopy eyes for the last two days, he has quit eating a full bottle (5 oz) I get mostly 3 oz, I'm lucky if I get 4 oz except in the middle of the night when he wants 5+ oz. I have tried to feed him in a quiet, nondistracting setting and still only 3 oz during the day. He also refuses solids. If I'm lucky I get 2-3 spoon fulls and he refuses to even open his mouth. I've tried switching what I feed him, but even on the stuff I know he loves, he will only eat 2-3 spoon fulls. I can only get him to open his mouth about 1 time a day, instead of the 3 that he normally eats.
I believe as a result of his lack of eating his stool output has become extremely liquidy. It has become so liquidy that I'm changing his colostomy bag every day instead of every three.
The next weird item, about a week ago, as I was dilating Hyrum the stick came out a bit bloody. I was surprised, but I didn't have any other discharge that was unusual and what I did have was not bloody, but the normal brownish color. But tonight as I was changing his bag (again), his mucus fistula was his normal color, but the mucus coming out seemed to be bloody.
The only thing that has changed is that Hyrum has started to take Prevacid as prescribed by Dr. Muntz. Dr. Muntz felt that his vocal chords were swollen. It is a dissolvable pill that he actually likes to put in his mouth. Since taking this pill, he has started to spit-up more. In talking with Dr. Pfeffer about this, her theory is that now that his vocal chords are not swollen it is allowing the reflux symptoms of spitting up to come through. He spits up about 1-3 times a day now.
So I'm not sure if I'm paranoid or overreacting. But I thought I would drop the note and ask your opinion.
Thanks
I have been convincing myself all week that I am a paranoid mom. There have been little things, weird things, that I by themselves seem nothing. But as I talk to John (my hunny) and tell him everything, he suggested I just run it past you.
So, Hyrum has had goopy eyes for the last two days, he has quit eating a full bottle (5 oz) I get mostly 3 oz, I'm lucky if I get 4 oz except in the middle of the night when he wants 5+ oz. I have tried to feed him in a quiet, nondistracting setting and still only 3 oz during the day. He also refuses solids. If I'm lucky I get 2-3 spoon fulls and he refuses to even open his mouth. I've tried switching what I feed him, but even on the stuff I know he loves, he will only eat 2-3 spoon fulls. I can only get him to open his mouth about 1 time a day, instead of the 3 that he normally eats.
I believe as a result of his lack of eating his stool output has become extremely liquidy. It has become so liquidy that I'm changing his colostomy bag every day instead of every three.
The next weird item, about a week ago, as I was dilating Hyrum the stick came out a bit bloody. I was surprised, but I didn't have any other discharge that was unusual and what I did have was not bloody, but the normal brownish color. But tonight as I was changing his bag (again), his mucus fistula was his normal color, but the mucus coming out seemed to be bloody.
The only thing that has changed is that Hyrum has started to take Prevacid as prescribed by Dr. Muntz. Dr. Muntz felt that his vocal chords were swollen. It is a dissolvable pill that he actually likes to put in his mouth. Since taking this pill, he has started to spit-up more. In talking with Dr. Pfeffer about this, her theory is that now that his vocal chords are not swollen it is allowing the reflux symptoms of spitting up to come through. He spits up about 1-3 times a day now.
So I'm not sure if I'm paranoid or overreacting. But I thought I would drop the note and ask your opinion.
Thanks
February 2
My guess is that he has some sort of an intestinal virus or infection and I would recommend seeing your pediatrician about this. It could be one of the usual intestinal things or a bacterial infection called C. diff. I would have him checked out for this. As far as the swollen cords etc no one has convinced me that one can predict with assurity the presence of reflux with this finding. We argue about this all the time and there are sometimes that the airway can be pretty inflamed if the patient really is refluxing up into the mouth and microaspirating. This is hard to prove. In this case the loose stools, frequent spitting up, not wanting to eat suggests to me that he may just be a normal baby and struggling with some crud (not very scientific).
Earl C. (Joe) Downey MD
Thank you for your recommendation. Hyrum was going in on Wednesday for a weight check, I think I will move it to Monday. Make sure everything is ok!
I find it funny that we have the same opinion of the reflux.
And for the rest...I hope it is just the crud. With Hyrum, one never knows what is related to what!
Thank you.
I find it funny that we have the same opinion of the reflux.
And for the rest...I hope it is just the crud. With Hyrum, one never knows what is related to what!
Thank you.
For something fun. Here is a picture of Hyrum about a week ago. We change his diaper/bag next to the bathroom sink (obvious reasons). Well he loves the sound of running water and has learned to reach over to grab the faucet. This was the first time that he literally pulled himself into the sink and turned the water on, giving himself a preview bath!Thanks for your help and your advice!
February 5
Dr. Downey,
I'm sure you know that we have the surgery date for Hyrum. My question is by having the surgery date being March 21, how long do we wait before we close his colostomy? I know back in December, I had hoped to have it taken care of by the end of March. Is it still better to wait and have the two surgeries combined?
I am also a bit concerned about his weight. We saw Dr. Connor on Monday and he weighed in at 15 lbs 15 oz. vs. two weeks ago he weighed in at 16 lbs 9 oz. He hasn't weighed this little since he was 8 months old. He is starting to eat again (yeah!), so I hope this will help him gain weight.
Thanks
I'm sure you know that we have the surgery date for Hyrum. My question is by having the surgery date being March 21, how long do we wait before we close his colostomy? I know back in December, I had hoped to have it taken care of by the end of March. Is it still better to wait and have the two surgeries combined?
I am also a bit concerned about his weight. We saw Dr. Connor on Monday and he weighed in at 15 lbs 15 oz. vs. two weeks ago he weighed in at 16 lbs 9 oz. He hasn't weighed this little since he was 8 months old. He is starting to eat again (yeah!), so I hope this will help him gain weight.
Thanks
February 6
Lets get together in Provo on 21 Feb. Ask Jill if you can be the last patient so we can talk.
February 8
So much has happened, but I was hoping for actual dates instead of estimates.
So much has happened, but I was hoping for actual dates instead of estimates.
We have been keeping ourselves busy with school, work and extra activities. We signed up the three oldest kids into swimming lessons. They go for about 2 weeks straight each month. It is enough to make life crazy and grateful for the two weeks in between! Rachel went from level 4 last month to a level 5/6 in February. Sarah was at a level 3 last month and the teacher thought she should stay at level 3, but this month the teacher thinks she should move on as she is swimming laps around the other kids! Karl is in level 2 and loving learning to swim under the water. Hyrum sits on the side lines with his big brown eyes begging to get in the water, but all he gets are more toys to play with while sitting on my lap or in his seat!
John met with both girls teachers this last week. Rachel's goal for school is to make more friends. Sarah is working on being grateful for what she has. Karl is doing so well with his words that after having a conversation with his Aunt Martha she remarked at how well she was able to understand him.
Hyrum's white blood cell count is currently high and the doctors are having a hard time figuring out why not to mention that he continues to bleed from his stoma. He has quit eating his solids, so he has lost about 1 pound (not a good thing) in the last two weeks, which means his weight is lower than it was at 5 months even though he is now 11 months. We have learned that he would rather starve than eat solids that he doesn't like the taste of. Mom and Dad finally put two and two together and realized that there were some things he would open his mouth for and some he refused. Hyrum is currently sleeping with oxygen as his sleep test showed that his lack of oxygen wakes him up very frequently. We received a summary of his sleep study and found it very interesting to read. It explained why he wakes up in the middle of the night. We are working to combine some of his upcoming surgeries. We will have both his adenoids and tonsils removed, and have the pouch on his urethra removed. We are looking at having this surgery on March 21. We are hoping to have it moved up, but have to convince one of the two doctors to do the surgery on a day that they don't normally do surgeries. In preparation of this surgery, Hyrum gets to have a 3 dimensional x-ray and a tattoo!! By marking with an internal tattoo on the spot that needs to be removed, it is their way of making sure that the surgeon will see and only remove the spot that needs to be removed.
As for John and I, with a really big help from his Dad, we were able to finish our basement. There was room for two bedrooms down there. For Jennifer's birthday, we moved both girls into their own bedrooms, moved Jennifer's sewing boxes from our bedroom into Hyrum's bedroom, and I got more lights into our Storage room. We also bought curtains for both girls and our front room! We now get to do the aftermath clean up and figure out how to put every thing that was in the basement before the project in its new place without making the house feel cramped! Now that we are done we are positive that we don't want any more "home" projects for a long while!
As for the picture, Karl and Hyrum are playing the piano, we have learned that Hyrum loves the piano!
February 24
Well can you believe that in 2 weeks, it will have been one year since our little Hyrum was born! As of this past week he is 16 lbs 14 oz. He has been under anesthesia 11 times. He has at least 2 more surgeries that are currently planned. The first one will be in March with his adenoids and tonsils. The second will be to close his colostomy (hook him up) after that. He will have his second sleep study about May to determine if he is sleeping better.
This year starts with us gearing up for other problems that are starting to develop...namely his jaw being offset, his head shape is off, and his spine may be developing problems.
During his last procedure, Karl was able to be with Hyrum while he woke up from anesthesia. Hyrum was pretty sluggish until Karl took his hand and told him he loved him and it was time to go home. Hyrum immediately perked up and within 15 minutes was drinking from his bottle. And as Karl and I was eating lunch with Grandma shortly after, Hyrum was begging for more food.
But despite that he still makes everybody around him smile, whether family or stranger! He is sitting up, and learning to move his body to a laying down position. He loves to laugh and loves to hear laughter.
If his big sisters are crying, he starts to laugh until they are laughing with him.
He got to meet his new cousin Enoch Burrell (son of Jonathan and Corrina) and as Enoch cried, so did Hyrum. Hyrum wasn't so sure about this other baby being fussy.
Rachel & Sarah are enjoying their new found space in the form of their own bedrooms in our newly finished basement. And mom is enjoying rearranging the storage room to create more space for storage! Karl hasn't decided if he likes not getting a new bedroom and has been a little jealous even though he has the best bedroom in the house!
This year starts with us gearing up for other problems that are starting to develop...namely his jaw being offset, his head shape is off, and his spine may be developing problems.
During his last procedure, Karl was able to be with Hyrum while he woke up from anesthesia. Hyrum was pretty sluggish until Karl took his hand and told him he loved him and it was time to go home. Hyrum immediately perked up and within 15 minutes was drinking from his bottle. And as Karl and I was eating lunch with Grandma shortly after, Hyrum was begging for more food.But despite that he still makes everybody around him smile, whether family or stranger! He is sitting up, and learning to move his body to a laying down position. He loves to laugh and loves to hear laughter.
If his big sisters are crying, he starts to laugh until they are laughing with him.
He got to meet his new cousin Enoch Burrell (son of Jonathan and Corrina) and as Enoch cried, so did Hyrum. Hyrum wasn't so sure about this other baby being fussy.
Rachel & Sarah are enjoying their new found space in the form of their own bedrooms in our newly finished basement. And mom is enjoying rearranging the storage room to create more space for storage! Karl hasn't decided if he likes not getting a new bedroom and has been a little jealous even though he has the best bedroom in the house!
