Saturday, March 05, 2011
Goal
I know I say this all the time, but I am hoping that I get better about keeping up with our blog. My goal is to post at least once a week. Time will tell if I meet that goal. I sometimes wish that my thoughts could just automatically go onto our blog, that would make it a lot easier ;)
Our photo sharing site
I'm not posting as many pictures on our blog...you may view more of our pictures at our shutterfly site. www.thesellyfamily.shutterfly.com
Children's Museum in St. Paul
Last Sunday, we took the boys to the Children's Museum in St. Paul. They had a blast!
Email written by Kai's PT from school
"Hello All - I had the opportunity to go with KS to his doctor's appointment at Gillette, and Dawn and I would like to share the following info. Some of it is review, but I think it's a good idea to keep it fresh in our minds anyway (Dawn, please add to or correct anything you want). As we all know, Kai has significant joint instability. At this time, they do not feel that he would benefit from any form of bracing aside from his SMOs (foot braces). The doctor feels that, because Kai would need solid bracing at virtually every joint, braces would actual restrict his movement too much to outweigh the benefits of supporting his joint. Even braces for hand/wrist positioning are not an option right now because hard braces would be too restricting, and he would still get too much mobility with soft splints. I asked if there are any movement or activities we should avoid with KS, and the doctor said that the activites that Kai chooses to do on his own, such as walking, crawling, climbing on furniture, etc. are all ok because KS is choosing to do them on his own. That's not to say that he won't try to do things that would be harmful, such as somersaults, or that giving him free reign on stairs is a good idea, but we should, for the most part, let him direct what types of activities he wants to do. Safety continues to be an issue, because KS's joint tend to give out and he doesn't always have the strength to catch himself, so close supervision is still needed for climbing, stairs, etc. Because of KS's joint laxity, he is at a significantly increased risk of dislocation at all joints. While he dislocates his own joints with some of the movements he does, WE have to be very careful not to give any outside forces to increase his likelihood of dislocation. Long story short, be VERY careful not to pull or tug on KS's arms or legs, always pick him up by his trunk, and NEVER swing him by his arms or legs as this provides strong stretching forces to his joints. Finally, and this one is probably one of the most important things to remember, Kai is at a high risk of joint dislocation at his spine and neck due to his ligament laxity. Becasue of this we should always avoid activities like somersaults and upside-down play because this can cause dislocation of his neck/spine which could result in injury to the spinal cord. As much as he likes it, and tries to do somersaults on his own, we really need to avoid this. I hope I covered everything, and Dawn please let us know if I missed anything. Let me know if you have any questions. Thank you,Lindsey"
It's been awhile....
It's been awhile since I have posted. It has been a busy, long winter! The last few months have been busy....or maybe it's just the boys keep me so busy....OR it's probably a combination of both. And of course, Levi is still working A LOT of hours!
Gavin--Gavin has been doing very well in school. He is quite the sponge, just soakin it all in! Gavin and Jace are now done with Taekwondo. I was a bit torn because I wanted Gavin to continue, but it was a huge commitment. It was just getting to be too much to have Taekwondo be part of our schedule. Shortly before the boys were done with Taekwondo, Master Winkler visited Gavin's class/school. Gavin was able to break a board in front of his class/school. He was thrilled about that. We were very proud of him! Gavin has been enjoying his DS that he got for Christmas. He has also been enjoying the wii. He loves to play games with Levi. Not much to update on Gavin. He just recently had an allergist appointment. His allergist would like us to continue the action plan that we are have in place. Other than that, Gavin is eagerly waiting for his birthday AND to lose a tooth! He has no wiggleys yet!
Jace--Jace...where to begin?? It's been a very challenging past few months with Jace. Every day I am trying to figure him. In January, he started up OT again at Pediatric Therapy. Because our insurance only allows 50 combined visits per year, Jace is only doing OT and Speech every other week. It's a bummer, because he could definitely use the therapy every week, especially OT. We have implemented a few new things with Jace. One big thing, was that we split him and Gavin up. Jace got his own room. His own space...his own mess! This has helped with a variety of things, so it was good change. We also have Jace doing indoor swinging (this helps cut down on the rocking). He LOVES to swing. He is on that swing several hours a day! We have also been trying the brushing technique. Jace likes it and is relaxed at the time of brushing, but I'm not sure if it is really helping him. Over the past few months, Jace seems to be very anxious, bouncing off the walls. He is constantly moving from the time he gets up in the morning until he goes to bed at night, with NO down time. He will go through rough patches here and there. During these times, on top of what I have mentioned, he regresses back to toddler age. He has a lot of toddler behavior. He becomes very defiant at times. Sometimes, it can be something so little (at least to us) that can set Jace off for days. It can be very frustrating. He went through a very rough few days, just recently. It was over about 4 days and he escalates as time goes on. There were a few days that he was so all over the place, he just didn't seem himself. I have a call into his doctor...hopefully will hear something this coming week. I also have an appointment for him with the Development and Behavior Doctor up at Children's in April (that was the earliest we could get in). I just really feel that there is more to Jace. I know some people don't understand, heck I don't even understand all the time. But I think some just don't get it, but when you deal with it on a daily basis...I think one knows their child. There is just more to Jace than we know...he does not act like a normal 4 year old. I can go on and on about Jace, but I want to try to get this whole update publish soon. I may blog about Jace in a future post. Jace will also see the sleep specialist up at Children's at the end of this month. We had been doing melatonin with him, but the last handful of nights we haven't been giving it to him and his has been sleeping through the night...go figure! Wonder how long it will last?
Kai--Kai...he's had a handful of appointments over the past few months and has a handful more in the next month or so. He visited Dr. Moore (Development and Behavior doc) in Dec. I think he was impressed on how well he was doing. During this visit, Kai got to walk down the hallway to his genetics doc's office to show off his walking skills to her. I think she was impressed as well. After all, from an orthopedic stand point, Kai wasn't going to walk. He is now walking 100% of the time. This is exciting and yet it makes me nervous. This has opened up a "new can of worms". Due to his joint issues, Kai does not have great alignment, nor that great of stability. His joints can give out on him at any given time and without warning. This is not fun, when he falls a lot. For awhile there, he had bruise on his forehead that I was calling "a permanent bruise". He always had a bruise there. As soon as the one bruise go away, a new one would appear. He recently has been remolded for SMO's (leg braces). Without these braces, Kai basically walks on his ankles. He will get his new braces on the 15th. His PT from school joined us for his appointment at Gillette with the Rehibilitation doctor. She wrote up a nice email about Kai's appointment and reminders to those who work with Kai. I asked her if I could share her email on my blog, so I will post that separately. I thought it was very well written. Kai's eye appointment went well. He goes back in 6 months. Kai's dentist appointment went better than I had expected. She stressed that we really need to be very good about brushing his teeth. She explained that if Kai were to a cavity, he would need to go to the hospital to have it taken care of. Not all of Kai's teeth are in, but he is going to have some issues with his teeth that will need to be addressed in the future. Kai also had a feeding clinic appointment just recently. He is weighing in at 21 lbs 1 oz and is 30 7/8 inches tall. He is in the less than 3% for both. So he has finally made it over 20 lbs! About 3 weeks ago, we bumped Kai up to 30 kcal for his formula and have decreased the quantity by a little. He is still doing the 4 bolus feedings during the day, but for now we have cut the overnight feeding out. He is taking more liquids orally. So we have added 6 ounces of the yogurt drinks to his daily diet plan to help add calories. I will probably do a separate post about the rest of his feeding stuff. Even though Kai has gained some weight, he is STILL in size 2 diapers! He is still in 18 month clothes as well (he is now 29 months). Kai is talking more. He says quite a few words and he also says some phrases. One of his favorite phrases..."I want down" (that's usually during a tube feeding). A few of his favorite words are "Otoodles" (from Mickey Mouse), "Move" (loves to tell this to his brothers) and just recently..."what?". He is an amazing kid, with normal toddler attitude!
Gavin--Gavin has been doing very well in school. He is quite the sponge, just soakin it all in! Gavin and Jace are now done with Taekwondo. I was a bit torn because I wanted Gavin to continue, but it was a huge commitment. It was just getting to be too much to have Taekwondo be part of our schedule. Shortly before the boys were done with Taekwondo, Master Winkler visited Gavin's class/school. Gavin was able to break a board in front of his class/school. He was thrilled about that. We were very proud of him! Gavin has been enjoying his DS that he got for Christmas. He has also been enjoying the wii. He loves to play games with Levi. Not much to update on Gavin. He just recently had an allergist appointment. His allergist would like us to continue the action plan that we are have in place. Other than that, Gavin is eagerly waiting for his birthday AND to lose a tooth! He has no wiggleys yet!
Jace--Jace...where to begin?? It's been a very challenging past few months with Jace. Every day I am trying to figure him. In January, he started up OT again at Pediatric Therapy. Because our insurance only allows 50 combined visits per year, Jace is only doing OT and Speech every other week. It's a bummer, because he could definitely use the therapy every week, especially OT. We have implemented a few new things with Jace. One big thing, was that we split him and Gavin up. Jace got his own room. His own space...his own mess! This has helped with a variety of things, so it was good change. We also have Jace doing indoor swinging (this helps cut down on the rocking). He LOVES to swing. He is on that swing several hours a day! We have also been trying the brushing technique. Jace likes it and is relaxed at the time of brushing, but I'm not sure if it is really helping him. Over the past few months, Jace seems to be very anxious, bouncing off the walls. He is constantly moving from the time he gets up in the morning until he goes to bed at night, with NO down time. He will go through rough patches here and there. During these times, on top of what I have mentioned, he regresses back to toddler age. He has a lot of toddler behavior. He becomes very defiant at times. Sometimes, it can be something so little (at least to us) that can set Jace off for days. It can be very frustrating. He went through a very rough few days, just recently. It was over about 4 days and he escalates as time goes on. There were a few days that he was so all over the place, he just didn't seem himself. I have a call into his doctor...hopefully will hear something this coming week. I also have an appointment for him with the Development and Behavior Doctor up at Children's in April (that was the earliest we could get in). I just really feel that there is more to Jace. I know some people don't understand, heck I don't even understand all the time. But I think some just don't get it, but when you deal with it on a daily basis...I think one knows their child. There is just more to Jace than we know...he does not act like a normal 4 year old. I can go on and on about Jace, but I want to try to get this whole update publish soon. I may blog about Jace in a future post. Jace will also see the sleep specialist up at Children's at the end of this month. We had been doing melatonin with him, but the last handful of nights we haven't been giving it to him and his has been sleeping through the night...go figure! Wonder how long it will last?
Kai--Kai...he's had a handful of appointments over the past few months and has a handful more in the next month or so. He visited Dr. Moore (Development and Behavior doc) in Dec. I think he was impressed on how well he was doing. During this visit, Kai got to walk down the hallway to his genetics doc's office to show off his walking skills to her. I think she was impressed as well. After all, from an orthopedic stand point, Kai wasn't going to walk. He is now walking 100% of the time. This is exciting and yet it makes me nervous. This has opened up a "new can of worms". Due to his joint issues, Kai does not have great alignment, nor that great of stability. His joints can give out on him at any given time and without warning. This is not fun, when he falls a lot. For awhile there, he had bruise on his forehead that I was calling "a permanent bruise". He always had a bruise there. As soon as the one bruise go away, a new one would appear. He recently has been remolded for SMO's (leg braces). Without these braces, Kai basically walks on his ankles. He will get his new braces on the 15th. His PT from school joined us for his appointment at Gillette with the Rehibilitation doctor. She wrote up a nice email about Kai's appointment and reminders to those who work with Kai. I asked her if I could share her email on my blog, so I will post that separately. I thought it was very well written. Kai's eye appointment went well. He goes back in 6 months. Kai's dentist appointment went better than I had expected. She stressed that we really need to be very good about brushing his teeth. She explained that if Kai were to a cavity, he would need to go to the hospital to have it taken care of. Not all of Kai's teeth are in, but he is going to have some issues with his teeth that will need to be addressed in the future. Kai also had a feeding clinic appointment just recently. He is weighing in at 21 lbs 1 oz and is 30 7/8 inches tall. He is in the less than 3% for both. So he has finally made it over 20 lbs! About 3 weeks ago, we bumped Kai up to 30 kcal for his formula and have decreased the quantity by a little. He is still doing the 4 bolus feedings during the day, but for now we have cut the overnight feeding out. He is taking more liquids orally. So we have added 6 ounces of the yogurt drinks to his daily diet plan to help add calories. I will probably do a separate post about the rest of his feeding stuff. Even though Kai has gained some weight, he is STILL in size 2 diapers! He is still in 18 month clothes as well (he is now 29 months). Kai is talking more. He says quite a few words and he also says some phrases. One of his favorite phrases..."I want down" (that's usually during a tube feeding). A few of his favorite words are "Otoodles" (from Mickey Mouse), "Move" (loves to tell this to his brothers) and just recently..."what?". He is an amazing kid, with normal toddler attitude!
A few randoms from Jan 2011
We ended up getting a new vehicle in January. Traded in our Trailblazer for this Tahoe. We absolutely love it and it's so much nicer to get the boys in and out.
Kai got his hair buzzed! He looks older!
Took the boys bowling...they had a lot of fun
The Rest of December 2010
December was a busy month with Christmas, Christmas programs, Gavin having surgery and Kai getting sick. Gavin and Jace both had Christmas programs at school. This Christmas time wasn't any different then the last few...Kai ended up in the hospital. It is starting be a Christmas tradition, that I wouldn't mind ending. Kai got the stomach bug a few days before Christmas and since we couldn't even get him to keep pedialyte in him, he was admitted into the hospital in Mankato. He was put on IV and that helped get him through the sickness better. He got discharged on Christmas Eve afternoon, just in time to start our holiday celebrations. Unfortunately, he ended up still be sick (we thought he was better when discharged). We just backed off of full strength/full feedings and did our normal plan when Kai gets sick like this. After a few days of this, we were able to get him back on track with his feedings and he was feeling better. About a week prior to Kai getting sick, Gavin had surgery. He had two hernias removed and a bilateral orchipexy done. He was so scared about having surgery, but did so well. It helped (for me) to have the same surgeon that has worked on Kai. Gavin's healing process took a handful of days. He pretty much hung out in the recliner and played video games. After about 5 days or so, he up running around and playing just like normal. Below are some of the Christmas pictures. I goofed and uploaded them in backwards order. It is too much to redo, so they will just have to be like this. To view all pictures, visit our web albums at www.thesellyfamily.shutterfly.com
Christmas at my sister's, the boys with their cousins
A quick self timer family picture right before church
Gavin with his presents (Christmas Eve at home)
Jace with his presents (Christmas Eve at home)
Kai with his presents (Christmas Eve at home)
The boys ready to open their presents (Christmas Eve at home)
Christmas at my sister's, the boys with their cousins
A quick self timer family picture right before church
Gavin with his presents (Christmas Eve at home)
Jace with his presents (Christmas Eve at home)
Kai with his presents (Christmas Eve at home)
The boys ready to open their presents (Christmas Eve at home) We spent Christmas our traditional way. Christmas Eve day at home, the boys get to open their presents that are under our tree. Early evening Church service and then off to Levi's parent's for Christmas dinner and presents. Christmas morning, the boys opened up presents from Santa and then we were off to my sister's. She lives about 2 hrs and 20 mins away. We did a late afternoon Christmas dinner and then presents. It was a busy couple of days and I felt bad that the boys got all these nice gifts and basically had to wait a few days to enjoy them! Considering Kai was sick, it still was a wonderful Christmas!
Jace at his Little Lambs Christmas Program
Jace all dressed up and so excited for his program at Little Lambs
Gavin at his Christmas program, he is in the far left front.
Gavin at his Christmas program, far left in front
Jace at his Little Lambs Christmas Program
Jace all dressed up and so excited for his program at Little Lambs
Gavin at his Christmas program, he is in the far left front.
Gavin at his Christmas program, far left in front
Subscribe to:
Posts (Atom)