Sunday, June 20, 2010
Early Dumpster Diver!
Today for dessert we had cake. I guess Annalise didn't feel that she got enough. What a resourceful little girl!
Thursday, June 17, 2010
Catching up this week
Summer is flying by! Before long, we will be making our road trips and then school will be starting again. The boys have been keeping busy with play rehearsal and reading books for the library reading program. William and Spencer have just made it to the finish line and Jacob is reading to finish up this week. Hopefully all the reading will continue even once there is not a big prize they are working towards. Luckily they all really love to read.
Next weekend will be the performance of the Wizard of OZ at the QCPAC. This is the play that John, William, and Jacob have been practicing so hard for. I attended one of the rehearsals last Saturday morning and got a few pictures of the munchkins. I haven't seen any of John's part yet, so that will be a surprise for me. I am very excited to go watch them perform.
Today we spent most of the day in Phoenix. Bryce had another MRI. Since Sheri had the day off, she met us at the hospital and took the other 4 kids to her house for a couple of hours and then came back and picked us up. Bryce did pretty well, all things considered. He did wake up pretty cranky though and ended up sleeping all the way home. We should hear about the results from that by next Wednesday.
After the MRI we went to visit Brock Dieu, a little boy about Jacob's age in our ward, who has been in the hospital 10 days now. He has been having trouble with stomach, neck, and head pain. They don't seem to be able to find out what is wrong with him, but this afternoon they were going to be doing a nerve block that will hopefully help with his headaches. Poor kid.
Last Tuesday we got some exciting news. Since Bryce's wonderful speech therapist is leaving the end of the month, she wanted to test Bryce so that she could leave the results for his new therapist. She used a standardized preschool test that goes up to age 7 on cognition skills. When we stopped, because it was time for the therapist to leave, Bryce was at an age 5 level! Crazy. He knows his colors, shapes, numbers, categories, and many other things. The therapist and I were both floored! She said that she will bring the test materials back this coming week and see if he can go any further. It truly is amazing to watch him. Since it is sometimes hard for him to stretch his arm out, he often uses his head to point to the right answer. He is also a little stinker sometimes and will choose what he wants rather than what the right answer is. Funny thing is that he totally gives himself away by looking at the right answer, then he will look up at us with a huge grin on his face and then pick the one he wants instead of the right one. He only did this a couple of times during the testing, so he had to redo those later to make sure he knew the right answer. He did! I am so thankful that Bryce has had Alyson as a therapist and that she was willing to work with him and realize that he does have great potential even if he cannot speak or move as others do. She is awesome and we will miss her greatly!
Next weekend will be the performance of the Wizard of OZ at the QCPAC. This is the play that John, William, and Jacob have been practicing so hard for. I attended one of the rehearsals last Saturday morning and got a few pictures of the munchkins. I haven't seen any of John's part yet, so that will be a surprise for me. I am very excited to go watch them perform.
Today we spent most of the day in Phoenix. Bryce had another MRI. Since Sheri had the day off, she met us at the hospital and took the other 4 kids to her house for a couple of hours and then came back and picked us up. Bryce did pretty well, all things considered. He did wake up pretty cranky though and ended up sleeping all the way home. We should hear about the results from that by next Wednesday.
After the MRI we went to visit Brock Dieu, a little boy about Jacob's age in our ward, who has been in the hospital 10 days now. He has been having trouble with stomach, neck, and head pain. They don't seem to be able to find out what is wrong with him, but this afternoon they were going to be doing a nerve block that will hopefully help with his headaches. Poor kid.
Last Tuesday we got some exciting news. Since Bryce's wonderful speech therapist is leaving the end of the month, she wanted to test Bryce so that she could leave the results for his new therapist. She used a standardized preschool test that goes up to age 7 on cognition skills. When we stopped, because it was time for the therapist to leave, Bryce was at an age 5 level! Crazy. He knows his colors, shapes, numbers, categories, and many other things. The therapist and I were both floored! She said that she will bring the test materials back this coming week and see if he can go any further. It truly is amazing to watch him. Since it is sometimes hard for him to stretch his arm out, he often uses his head to point to the right answer. He is also a little stinker sometimes and will choose what he wants rather than what the right answer is. Funny thing is that he totally gives himself away by looking at the right answer, then he will look up at us with a huge grin on his face and then pick the one he wants instead of the right one. He only did this a couple of times during the testing, so he had to redo those later to make sure he knew the right answer. He did! I am so thankful that Bryce has had Alyson as a therapist and that she was willing to work with him and realize that he does have great potential even if he cannot speak or move as others do. She is awesome and we will miss her greatly!
Sunday, June 13, 2010
Emotional Breakdown=Emotional Breakthrough
Church today was wonderful and a great end to this weekend. I loved Sister Farr's talk. Looking back, it has been an odd week. I wrote a little bit of my feelings on Tuesday and those ups and downs have continued through the week. Thursday I got a call from Dr. Narayanan's nurse saying that Bryce's insurance is not willing to pay for the tests that he wants done at this time. She said that we can try going through his primary care doctor. Another option is if Bryce is in the hospital for something else, they may be able to do the tests then and get it covered that way. I guess we will try through the PC Doctor first and go from there. She also said that they had signed the paper for Make-A-Wish saying that Bryce is at risk and should go sooner. Well, that is great except that it was 3 months ago that we needed that signed! Now he has tests and surgery coming up and I don't know how he would handle being out in the heat and humidity anyway, so we think that waiting until November will be the best option at this time. I don't know. I haven't heard from MAW, so we'll just see what happens with that.
Friday, Sheri came down and watched the kids for me so that I could get out for a while. I didn't realize until I was out, how needed that time was! I hadn't been out of the house (except to throw away dirty diapers or call the boys in) since Monday. Way too long! I just went to a meeting and got some grocery shopping done, but wow it felt good to be "free".
And then Saturday hit! For a couple of weeks we have had a terrible time with ants and a mouse in the house. We have cleaned, set traps, exterminated, used everything that people have suggested and still this week, the ants hit the large pantry. It was more than I could handle. I have this thing about ants. It goes way back to my high school days when I worked for Sno Shack. One Saturday night a co-worker didn't clean the bottles or counters before leaving. So, when I went in Monday morning the place was crawling with ants. Seriously, the front window was black! It took all morning and a good hose to clean the place out. I had ants crawling all over me. I had nightmares for days. Ants gross me out!!! Anyway, yesterday morning I had too many other things going on and so I just closed the door and told John I was done. Then I kind of went into a rant session about God punishing me for something, and how I just can't take anymore opposition and and all that. Looking back, it was really ridiculous, but I think that I had just emotionally had it. He said that maybe we'll see someday that these things were really blessings rather punishments. I just said that I can't see how ants and mice could ever be considered blessings! That night he came home with about 6 different types of ant traps and luckily, it looks like one of them has done the trick. I'll let you know in a few days.
The biggest chore that has been weighing on my shoulders right now is our toy room. We need more room for bedrooms, so we have decided to convert the toy room into William's bedroom. In order to do that, I need to downsize on the toys...a lot! I've been needing to do this for quite some time and a part of me has been so anti-doing it, that I have not been able to tackle it. It's like I have been fighting against myself about this room, which has never really made sense. Well, Saturday morning I decided it just had to be done. I just had to get in there and tackle it! So after lunch, getting kids down for naps, and a bit more complaining about all my stress and opposition and all, I got in there and attacked it. As I dug into the first box of toys, a HUGE realization hit me. The reason that a part of me was dreading this job so much, was because deep down inside, I knew it was going to hurt. I didn't realize it consciously until the moment I picked up a toy that I had bought only months before, specifically for Bryce. At that time he was able to use it on his own. To push the buttons and stack the blocks. He no longer can. As I held that toy, I could not hold back the tears any longer. And as I continued through that box of similar toys I just cried and cried. Then I realized that I had to let go. Keeping those toys closed up in that box is not going to make Bryce able to use them again some day. Sure Annalise can use them now and I did keep a few out for her, but those toys were bought specifically with Bryce in mind hoping that he may somehow be able to play like all other 2 and 3 year olds. Many of the toys he was only able to use for a short period of time and some, not at all. Bryce has his ups and downs. Some days he can hold himself up a little better, or reach his arms out a little better, but I know that until a cure is found for whatever is causing the regression in his body, he will not "get better". He will not be able to play with toys the way other children do. He will not be able to walk, run, kick a ball, swing, and talk like other children do...no matter what I do...and that makes me sad! So as I sat there in the toy room, going through this box, and crying, I realized that I had to let go of them and that finally I was able to. (Most of them anyway! =) Somehow that breakdown from the week, which led to the breakthrough which led to another breakdown made it possible for me to continue on and tackle the rest of the room as well. It was amazing actually how quickly it went after that and how much easier it was to throw away, or pack away for the yard sale, toys that are just not used by my kids anymore. Of course, I kept things that they still use, but it sure felt good to finally get in and organize the room that has been haunting me for weeks!
Friday, Sheri came down and watched the kids for me so that I could get out for a while. I didn't realize until I was out, how needed that time was! I hadn't been out of the house (except to throw away dirty diapers or call the boys in) since Monday. Way too long! I just went to a meeting and got some grocery shopping done, but wow it felt good to be "free".
And then Saturday hit! For a couple of weeks we have had a terrible time with ants and a mouse in the house. We have cleaned, set traps, exterminated, used everything that people have suggested and still this week, the ants hit the large pantry. It was more than I could handle. I have this thing about ants. It goes way back to my high school days when I worked for Sno Shack. One Saturday night a co-worker didn't clean the bottles or counters before leaving. So, when I went in Monday morning the place was crawling with ants. Seriously, the front window was black! It took all morning and a good hose to clean the place out. I had ants crawling all over me. I had nightmares for days. Ants gross me out!!! Anyway, yesterday morning I had too many other things going on and so I just closed the door and told John I was done. Then I kind of went into a rant session about God punishing me for something, and how I just can't take anymore opposition and and all that. Looking back, it was really ridiculous, but I think that I had just emotionally had it. He said that maybe we'll see someday that these things were really blessings rather punishments. I just said that I can't see how ants and mice could ever be considered blessings! That night he came home with about 6 different types of ant traps and luckily, it looks like one of them has done the trick. I'll let you know in a few days.
The biggest chore that has been weighing on my shoulders right now is our toy room. We need more room for bedrooms, so we have decided to convert the toy room into William's bedroom. In order to do that, I need to downsize on the toys...a lot! I've been needing to do this for quite some time and a part of me has been so anti-doing it, that I have not been able to tackle it. It's like I have been fighting against myself about this room, which has never really made sense. Well, Saturday morning I decided it just had to be done. I just had to get in there and tackle it! So after lunch, getting kids down for naps, and a bit more complaining about all my stress and opposition and all, I got in there and attacked it. As I dug into the first box of toys, a HUGE realization hit me. The reason that a part of me was dreading this job so much, was because deep down inside, I knew it was going to hurt. I didn't realize it consciously until the moment I picked up a toy that I had bought only months before, specifically for Bryce. At that time he was able to use it on his own. To push the buttons and stack the blocks. He no longer can. As I held that toy, I could not hold back the tears any longer. And as I continued through that box of similar toys I just cried and cried. Then I realized that I had to let go. Keeping those toys closed up in that box is not going to make Bryce able to use them again some day. Sure Annalise can use them now and I did keep a few out for her, but those toys were bought specifically with Bryce in mind hoping that he may somehow be able to play like all other 2 and 3 year olds. Many of the toys he was only able to use for a short period of time and some, not at all. Bryce has his ups and downs. Some days he can hold himself up a little better, or reach his arms out a little better, but I know that until a cure is found for whatever is causing the regression in his body, he will not "get better". He will not be able to play with toys the way other children do. He will not be able to walk, run, kick a ball, swing, and talk like other children do...no matter what I do...and that makes me sad! So as I sat there in the toy room, going through this box, and crying, I realized that I had to let go of them and that finally I was able to. (Most of them anyway! =) Somehow that breakdown from the week, which led to the breakthrough which led to another breakdown made it possible for me to continue on and tackle the rest of the room as well. It was amazing actually how quickly it went after that and how much easier it was to throw away, or pack away for the yard sale, toys that are just not used by my kids anymore. Of course, I kept things that they still use, but it sure felt good to finally get in and organize the room that has been haunting me for weeks!
Tuesday, June 8, 2010
Emotional Ups and Downs!
Well, we have had a couple of days of ups and downs. Monday morning I attended the funeral for Sister Sourant. It was a beautiful service. When I found out how old she was when she passed, it surprised me that she was the same age as my parents. It's scary to think of losing my parents. I know the time will come and I know whenever it does, I will not be ready. One of Bryce's therapists is also out of town again this week. She is with her mother who has recently been diagnosed with cancer and has been given only 2-6 weeks to live. So sad! =( Then although I try not to let them, my thoughts turn to Bryce. Oh how I hope and pray that he is with us for a very long time!
Speaking of Bryce, I believe I told you about a Dr. in Utah that we have been in touch with about Bryce's condition. Well, he is leaving for Africa for a month on the 11th of June. He wants to have Bryce get an EMG done and this is the procedure which this doctor does. He has family here in Arizona and said that if he wasn't leaving for Africa so soon, he would come for a visit and see Bryce while he was here. I told him that I would gladly come to Utah, but he just doesn't have time before he leaves. So, he got in touch with a colleague here in Gilbert and got some names of some Doctors that he believes could do the procedure and then send the results to him and he could take a look. To make a long story a little bit shorter, the colleague got me some names and after making a bunch of phone calls I found that none of these doctors do the procedure and in order for them to refer Bryce to someone, he would have to be established as a patient of theirs which would take at least a month. Well, in a month Dr. Nielsen will be back and we will be on our way to Colorado for a family reunion. So I emailed him and told him what was happening and that we could leave early and go through Utah. This is the email I got in response:
The downer of today is that Bryce has been having a lot of trouble with his breathing throughout the day. He has had many non-breathing episodes which are very scary. I was supposed to go to pack meeting tonight as part of my calling. I tried to make it work out, but with John being gone I just could not feel good about leaving Bryce with a babysitter. I could have taken all 5 kids, but I knew that if I did, I would be of no help to anybody there. It tears me apart, because I want to do what I am supposed to do and I don't like letting other people down, but my number one responsibility in a case like this had to be to my child. I just couldn't leave him. I'm sure they did fine without me, it just makes me feel bad. Hopefully tonight and tomorrow will be better, breathing wise, for Bryce.
Now on to the ups of the day! I got a call from Hanger orthotics today and was told that Bryce's new AFO's have been approved so it should just be a couple more weeks of waiting until they are made and sent here for him. It will be good to get new ones that hopefully will fit him a little better until he has surgery.
Bryce's speech therapist was here today and went through some things with Bryce and said that she wishes we had his communication device because he knows everything she should be teaching him for his age. He flies through colors, shapes, numbers, categories, etc. It's amazing! Well, tonight as we were getting everyone ready for bed, there was a knock on the door. To our surprise it was Bryce's previous support coordinator holding a box which contained the mount for his device!!! Happy day. Now I believe we have all of the pieces to make the thing usable. Now just to get it mounted and get the training on how to use it! I will call about that tomorrow. I am so excited that it has finally arrived!
Speaking of Bryce, I believe I told you about a Dr. in Utah that we have been in touch with about Bryce's condition. Well, he is leaving for Africa for a month on the 11th of June. He wants to have Bryce get an EMG done and this is the procedure which this doctor does. He has family here in Arizona and said that if he wasn't leaving for Africa so soon, he would come for a visit and see Bryce while he was here. I told him that I would gladly come to Utah, but he just doesn't have time before he leaves. So, he got in touch with a colleague here in Gilbert and got some names of some Doctors that he believes could do the procedure and then send the results to him and he could take a look. To make a long story a little bit shorter, the colleague got me some names and after making a bunch of phone calls I found that none of these doctors do the procedure and in order for them to refer Bryce to someone, he would have to be established as a patient of theirs which would take at least a month. Well, in a month Dr. Nielsen will be back and we will be on our way to Colorado for a family reunion. So I emailed him and told him what was happening and that we could leave early and go through Utah. This is the email I got in response:
Hi Tammy:
Thanks for getting back with me about the status of the EMG situation for Bryce. That is amazing that nobody can do that. I would be happy to help out if you wanted to wait until you come through on your way to the family reunion in July. I get back from Africa on 29 June and am around for the rest of the summer. I could see Bryce here and do the EMG studies wouldn’t charge anything for that. Don’t worry about trying to deal with UHC and out of state…it is not worth the hassle and I am happy to accommodate that. We will have to figure out the best day to see him. When do you think you would be coming through Utah? If you need a place to stay, you are welcome to stay with my wife, Jodi, and I. We are alone in our home and have plenty of room (kids are all moved out, yeah!). Let me know what the schedule looks like and we can make plans before I leave as far as when we could see Bryce.
I will stand by to hear from you.
Take care, Tammy.
Rick Nielsen
The downer of today is that Bryce has been having a lot of trouble with his breathing throughout the day. He has had many non-breathing episodes which are very scary. I was supposed to go to pack meeting tonight as part of my calling. I tried to make it work out, but with John being gone I just could not feel good about leaving Bryce with a babysitter. I could have taken all 5 kids, but I knew that if I did, I would be of no help to anybody there. It tears me apart, because I want to do what I am supposed to do and I don't like letting other people down, but my number one responsibility in a case like this had to be to my child. I just couldn't leave him. I'm sure they did fine without me, it just makes me feel bad. Hopefully tonight and tomorrow will be better, breathing wise, for Bryce.
Now on to the ups of the day! I got a call from Hanger orthotics today and was told that Bryce's new AFO's have been approved so it should just be a couple more weeks of waiting until they are made and sent here for him. It will be good to get new ones that hopefully will fit him a little better until he has surgery.
Bryce's speech therapist was here today and went through some things with Bryce and said that she wishes we had his communication device because he knows everything she should be teaching him for his age. He flies through colors, shapes, numbers, categories, etc. It's amazing! Well, tonight as we were getting everyone ready for bed, there was a knock on the door. To our surprise it was Bryce's previous support coordinator holding a box which contained the mount for his device!!! Happy day. Now I believe we have all of the pieces to make the thing usable. Now just to get it mounted and get the training on how to use it! I will call about that tomorrow. I am so excited that it has finally arrived!
Thursday, June 3, 2010
Final Days
Sister Shirley Sourant passed away early this morning. She was a wonderful lady in our ward and will be greatly missed.
Yesterday was the last day of school for Jacob and Spencer. It was so nice this morning not to have to rush around getting everyone ready and out the door. Yesterday Jacob's class had a little end of the year party that the parents were invited to attend. It was at noon, so I put the two little ones down for naps and then left them and William with a sitter so that I could go over. It will be so nice when William is old enough to babysit. Anyway, the party was nice. Mrs. Phan had little awards for each of the kids.
Here is Jacob with his award. He got the Almond Joy award for being one of the happiest kids in class.
No this is not a police line up, it is Jacob with some of his friends from school.
The kids had made pinatas earlier in the day and then during the party we went out and they broke them. This is a picture of Dylan, a little girl who Jacob has become really good friends with since moving to this new school. She is a sweetheart!
The pinatas needed a little help.
Jacob waiting anxiously for his group's pinata!
This is the pinata that Jacob's group made.
Digging in!
Jacob got mostly bookmarks. I think the pinatas were the teachers way of getting rid of a lot of stuff she had left over from the year. This is her last year of teaching.
These are Jacob's 5th grade buddies. The 5th and 6th graders are buddied up with kids in the younger grades. The buddies are basically responsible to help their buddy out with anything they are in need of during the year. They came into the classroom once a week (I think) to work on projects with their buddies. Seems like a neat setup. Jacob sure thinks his buddies are great!
Jacob and Mrs. Phan. She has been a great teacher for Jacob in the time that he has been at this school.
It was a tough decision to move Jacob and Spencer to a new school in the middle of the school year, but it has definitely turned out the be the right one. Although I love many things about Benjamin Franklin Charter School, the structure here fits their personalities and their needs at this time much better then Ben Franklin did. I am glad that they ended out the school year successful and happy! All three boys will be attending Patterson Elementary next year and we are all very happy about that!
Wednesday evening we had our bug man come spray again because we have had a lot of trouble with ants and cockroaches in the house. EWWW! We have also seen two mice in the house now, so we have set traps for them as well. Lets hope we can get rid of some of these unwanted guests!
Also last night the boys had rehearsal again so it was a hot pockets for dinner night and off they went. I am excited to see them in the play, and excited to have them finished with rehearsals! Just a few more weeks!
Today has been a little calmer and I hope to have calmer days ahead. I did meet with Bryce's new case manager today for his quarterly report. It's good to have that out of the way.
Yesterday was the last day of school for Jacob and Spencer. It was so nice this morning not to have to rush around getting everyone ready and out the door. Yesterday Jacob's class had a little end of the year party that the parents were invited to attend. It was at noon, so I put the two little ones down for naps and then left them and William with a sitter so that I could go over. It will be so nice when William is old enough to babysit. Anyway, the party was nice. Mrs. Phan had little awards for each of the kids.
Here is Jacob with his award. He got the Almond Joy award for being one of the happiest kids in class.
No this is not a police line up, it is Jacob with some of his friends from school.
The kids had made pinatas earlier in the day and then during the party we went out and they broke them. This is a picture of Dylan, a little girl who Jacob has become really good friends with since moving to this new school. She is a sweetheart!
The pinatas needed a little help.
Jacob waiting anxiously for his group's pinata!
This is the pinata that Jacob's group made.
Digging in!
Jacob got mostly bookmarks. I think the pinatas were the teachers way of getting rid of a lot of stuff she had left over from the year. This is her last year of teaching.
These are Jacob's 5th grade buddies. The 5th and 6th graders are buddied up with kids in the younger grades. The buddies are basically responsible to help their buddy out with anything they are in need of during the year. They came into the classroom once a week (I think) to work on projects with their buddies. Seems like a neat setup. Jacob sure thinks his buddies are great!
Jacob and Mrs. Phan. She has been a great teacher for Jacob in the time that he has been at this school.
It was a tough decision to move Jacob and Spencer to a new school in the middle of the school year, but it has definitely turned out the be the right one. Although I love many things about Benjamin Franklin Charter School, the structure here fits their personalities and their needs at this time much better then Ben Franklin did. I am glad that they ended out the school year successful and happy! All three boys will be attending Patterson Elementary next year and we are all very happy about that!
Wednesday evening we had our bug man come spray again because we have had a lot of trouble with ants and cockroaches in the house. EWWW! We have also seen two mice in the house now, so we have set traps for them as well. Lets hope we can get rid of some of these unwanted guests!
Also last night the boys had rehearsal again so it was a hot pockets for dinner night and off they went. I am excited to see them in the play, and excited to have them finished with rehearsals! Just a few more weeks!
Today has been a little calmer and I hope to have calmer days ahead. I did meet with Bryce's new case manager today for his quarterly report. It's good to have that out of the way.
Tuesday, June 1, 2010
Back to Real Life!
Real life hit today and it hit hard! Today was one of those days where I had things that needed to be done overlapping each other. It was a very stressful beginning and I had to just do and not think too much about all that had to be accomplished or I wouldn't have been able to handle it. Jacob and Spencer have two more days of school left and then we will be finished with that for this year. The funny thing is that I'm pretty sure these last two days are just going to be fun days. Spencer's class will be having beach days and so he brought a beach towel to sit on, and they both will be having pizza parties tomorrow.
Bryce had speech and physical therapy today. We found out that his speech therapist will be leaving us in July. He will get another one, but we will miss Alyson a lot. She has been amazing with Bryce. She has really done things to help keep his mind going and she fully believes, by what she has seen, that Bryce is very high functioning cognitively. She makes therapy fun for Bryce while also challenging him. I just wish that we would get his communication device before she left. I'm sure she could help him out with that a lot. Hopefully Bryce's new therapist will be wonderful as well.
After his therapies, I fed him lunch, left William and Annalise with a babysitter, and headed off for his GI appointment. He took a nap on the way up. I actually don't mind going to the GI appointments because we usually get right in and, now that he has his feeding tube, we usually get good news. This time was no exception to that. We found out that he now weighs 26 lbs. Only about a pound away from our goal for him. He has also grown about an inch and a half since January. We do need to tweak his feedings a little bit, so the nutritionist will be calling me soon to let me know how he suggests we do that. Basically we need to get more fluids in than he is getting, but keep the same number of calories for now, so we will be adding more water to the mixture and possibly feeding him more often. Hopefully Bryce will continue to tolerate it well and continue to grow.
On the way home, we stopped at Walmart to pick up some things for cub scouts and some pictures from old one time use cameras that I found laying around. I had no idea what was on them, so that was kind of fun. Most of them were from the time 2 years ago when my kids stayed with my parents in Texas while John and I cruised to Alaska. It was fun to see pictures and remember that time again.
I got home in time to change for cub scouts and William and I headed out the door. Cubs went relatively well. I was glad that my assistant den leader came and that things ran smoothly for the most part. We had a brief meeting after cubs to plan for the upcoming pack meeting and then I came home, took over kid duties and John left for Play rehearsal.
It's been a busy, busy day and I am glad to have made it through alive and relatively well! =)
Bryce had speech and physical therapy today. We found out that his speech therapist will be leaving us in July. He will get another one, but we will miss Alyson a lot. She has been amazing with Bryce. She has really done things to help keep his mind going and she fully believes, by what she has seen, that Bryce is very high functioning cognitively. She makes therapy fun for Bryce while also challenging him. I just wish that we would get his communication device before she left. I'm sure she could help him out with that a lot. Hopefully Bryce's new therapist will be wonderful as well.
After his therapies, I fed him lunch, left William and Annalise with a babysitter, and headed off for his GI appointment. He took a nap on the way up. I actually don't mind going to the GI appointments because we usually get right in and, now that he has his feeding tube, we usually get good news. This time was no exception to that. We found out that he now weighs 26 lbs. Only about a pound away from our goal for him. He has also grown about an inch and a half since January. We do need to tweak his feedings a little bit, so the nutritionist will be calling me soon to let me know how he suggests we do that. Basically we need to get more fluids in than he is getting, but keep the same number of calories for now, so we will be adding more water to the mixture and possibly feeding him more often. Hopefully Bryce will continue to tolerate it well and continue to grow.
On the way home, we stopped at Walmart to pick up some things for cub scouts and some pictures from old one time use cameras that I found laying around. I had no idea what was on them, so that was kind of fun. Most of them were from the time 2 years ago when my kids stayed with my parents in Texas while John and I cruised to Alaska. It was fun to see pictures and remember that time again.
I got home in time to change for cub scouts and William and I headed out the door. Cubs went relatively well. I was glad that my assistant den leader came and that things ran smoothly for the most part. We had a brief meeting after cubs to plan for the upcoming pack meeting and then I came home, took over kid duties and John left for Play rehearsal.
It's been a busy, busy day and I am glad to have made it through alive and relatively well! =)
LD? SMA? The Journey Continues!
So here we are heading into June. Next month it will be 2 years since this journey we are on to find out what is going on with Bryce's little body began. And unfortunately, we still seem to be a long way from knowing what is causing the problems. However, we have a new lead and I am kind of excited about it. A week or so ago, a family in our ward, the Morley family, was telling us about a Dr. friend from their old ward in Utah. They said that he has some type of specialty working with the nerves in the body and finding where the shorts are from the messages going from the brain to the muscles. He also has opened a school in Provo, Ut.--Rocky Mountain University, where he teaches students about this method that he has. After talking with Bro. Morley for a while and finding out more about Dr. Rick Nielsen from the Internet, I decided that it wouldn't hurt to give him a call. He sounds like a very impressive Doctor. Well, last night he called us and we talked for some time describing Bryce's condition and some of the tests that he has had. He asked if we have ever heard of Kugelburg-Welander disease. It's a type of Spinal Muscular Atrophy. I have heard of SMA but not this particular type. He told us to look it up and then give him a call this morning and we would talk more. We did and a lot of the symptoms of SMA type 2 look very similar, but not everything. Anyway, I will be calling him in a little bit and we will see what happens. The prognosis of SMA is no better than that of LD and at the present time there is no cure, but I still think it is something worth looking into and it will be interesting to see what this doctor has to offer. Maybe we will find it is not SMA, but something else. Who knows. It's worth looking into anyway.
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