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!

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)

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

We have had a rough few months with Jace. We have been trying several things to help him. School is working nicely with us. He gets sensory breaks during his morning preschool and then we also communicate through a notebook. We also got Jace this squishy fish that he can have with him so when he feels anxious, he can fidget with it. And school has been okay with him having it there. Play therapist thinks he is regressing back to toddler stages, which some of his behavior is totally toddler like. Jace is like a puzzle to me. I wish I could get him figured out to help him more and so that we can have better days. I believe that his anxiety has increased, which could be the reason why his rocking has increased ALOT! He isn't sleeping through the night and nor does he stay in his bed. He gets up in the middle of the night and goes down to the couch and rocks. So, since he isn't getting a good night sleep that in turns affects his behavior. I called his doctor on Monday and just heard back from him last night. The plan is...to increase his medicine to help with the anxiety. We are going to try this for a few days and see if this will also help with his sleep. If this does not help with his sleep, we will then start melatonin with him. Also, his doctor put in a referral for Jace to possibly start OT again to help with his sensory issues. They will have to do an assessment again, but I have already chatted with them about him so we will see how that turns out. Hopefully in the next week or so, we will see some improvement with Jace.

Kai is walking!

Not the best video quality!

Selly Family Update

Well I haven't been the greatest of keeping up with our blog. I wish I would make the time to blog at least once a week. We are keeping busy. I feel like I am running all the time, with bringing the boys to and from school, Jace and Kai's therapies, doctor's appointments and Taekwondo and then this past month extra visits to my great grandma's. On top of all of this, Levi is on 10 hour shifts. And for those who don't know how Unimin works their guys, they work 19 days on and then have 2 days off. That is a lot of hours if they are doing 10 hour shifts and sometimes it's 12 hours. Or Levi will get called back to work shortly after he gets home. We are looking forward to Thanksgiving break, we are hoping that Levi will have 4 days for that. Kai's update is in the blog about him turning 2 years old. Some time here I will blog about his medical updates. Gavin is doing good, growing like a weed! He is loving kindergarten and is doing very well. It just amazes me how smart he is already! He is doing things that I think is beyond kindergarten level. We just had his conference and he had a really good report card! He has improve on his writing skills and coloring as well. He knows quite a few sight words and quite a bit of math as well. He also gets very wiped out from kindergarten. He is soooo crabby when I pick him up from school. It's kind of a bummer because it's almost every day and it's not pleasant for me or him. I almost wish he would just do a little cat nap after school, but Gavin doesn't really do cat naps. He is one that is out for awhile. Along with him being crabby after school, comes sassy mouth too ( I really think a lot of it has to do with him being wiped out). He is working on having better afternoons after school. Just recently, Gavin had an audiologist appointment. I wanted to have his hearing checked because it seemed like he wasn't hearing that great. My suspicions were somewhat right. His hearing falls in the normal range, but for his left ear, it is barley in the range. She also tested the pressure in his ears. There is negative pressure in his left ear. She stated that if he were to keep going this way with that pressure, he could potentially have a hearing loss. So Gavin sees the ENT on Monday to see what he would like to do to relieve that pressure. Gavin also had a pulmonologist appointment recently. They did that blowing test ( I can't remember what it is called). He did ok, but the numbers I think were on the low side. His doctor said to continue the Asthma Control Plan that we have for him and to continue the daily medicines. I have noticed that his asthma is flaring up, so I think we are gonna have to step it up a notch.

There isn't much to update about Levi, he work a lot of hours and is wiped out a lot. As far as me, for someone who doesn't work, I sure keep really busy. I just feel like I can't keep up with everything and it is sometimes hard to find balance. In the past month, I have been helping my great grandma a lot. She is getting up there in age, she just turned 93! It is getting a bit challenging for her to do things. She's can barley see, has a hard to hearing and has a hard time getting around. She still lives on her own in a high rise in Edina. She has asked me to help her with multiple things. I have recently been added to checking account and now power of attorney of her finances. I am currently helping her get her Will prepared with a lawyer and also I will be the guardian of her when she becomes incapacitated. So it has been a little hectic trying get everything taken care of, especially when she is a little over an hour away. I have also been trying to get the rest of our things unpacked! Yes, I know, we moved here at the end of April! I am trying to go through things and get rid of stuff we no longer use or don't need.

Jace's update: Love this kid to death, but he is definitely my most challenging! This past month or so has been really challenging. A lot of people just look at his behaviors as just "bad behavior". But it's really not (there are times that it is). There is so much to Jace that people don't see and understand. Heck, I don't always understand. I am trying to learn more about Jace so that I can help him more and in turn then he can function more like a regular 4 year old. For those who don't really know about Jace's stuff...Jace has been diagnosed with overanxious childhood disorder (childhood anxiety) with some OCD features. Jace also shows autistic traits and SPD (sensory processing disorder) traits. On top of all of this, Jace has a speech delay. So if you know about some of these disorders, you can probably relate to how challenging it can be. Jace still continues to do speech therapy at Pediatric Therapy every week. He speech has improved a lot! We were going through a period about a month or so ago where Jace's behavior was really bad. He was rocking A LOT more and not sleeping through the nights anymore. I wish I had video of his rocking to show people who haven't seen it. It can get very intense! Jace continues to do play therapy as well, so I had talked to his therapist about it. He got bumped to doing play therapy every week instead of every other. We had learned a few things. The main thing was he wasn't enjoying his morning preschool anymore. We still don't' know exactly way, but I have been in contact with his teacher and OT at school. I found out that he was doing some silly behaviors, nothing too bad. His therapist said that he was doing those silly behaviors because he is trying to work through whatever is bothering at school. So Jace now gets sensory breaks at school. He just started them last week, so we will see how it goes. We are gonna try some therapeutic listening with him. Jace saw his regular doctor (who is excellent doctor for these kinds of things) and he would like us to try these new things to see if they help before upping his medicine dose. As far as the rocking....it can be challenging at times. Jace NEEDS that hard impact. This is the only way he knows how to wear himself down. So we are working on a few things at home to help him with that. We are trying to do some rough house play at night time just before bed. We got him a sit and spin for Christmas. We are also looking a getting a hammock swing for the doorway swing. As far as him sleeping through the night, part of the problem is that he falls of of bed and then the only way for him to get back to sleep is to rock. I was looking into getting him a bed bolster, but they are kind spendy. So I got creative and made one kind of. I got a body pillow and a deep fitted sheet. I put the body pillow under the sheet length wise of the bed. So this acts kinda like a bed bolster and it's comfy. I did this two days ago and so far the past two nights he has slept through the night and in his bed...yeah! I hope this works long term. I will have to get a picture of what it looks like and post. So as you can see, it's been a little hectic around here trying to help Jace meet his needs. I can go on and on about his stuff and the different disorders, but.... So if anyone who reads this has any other ideas that may help Jace, feel free to let me know.

Jace's bed with my homemade bed bolster

First Snow Fall 2010

November 13th, 2010--The first snow fall of the year. This is the first time Kai actually got out and "played" played in the snow. He did not like it! He lasted just a few minutes, just long enough for me to get some pictures. Gavin and Jace had a blast. They played out in the snow for a long time.

Hotel in St. Cloud

The first weekend in November we went up to a hotel in St.Cloud for a little weekend getaway. The boys had a lot of fun. We meet up with cousins during the day on Saturday and then Saturday night we had dinner with my cousin, Kim and her boys, friend Berta and her husband, Brandon, friend Kayla, her husband Rukshan and their kids. It was a great time!

Kai having fun in the wading pool

Kai kept wanting to go up and down the stairs

Gavin (the pool water was a little chilly)

Gavin and Jace playing with the Ipad

Kai eating

Kai trying to play the games

Gavin and Jace with their cousins, Alex and Josiah

Gavin and Jace playing in the water

Jace had fun playing with the sprayer

Jace

It was a great time! This sicknesses didn't stop us. Just before the weekend Jace and Kai had gotten pink eye. Jace's cleared up right away, but Kai's didn't. Kai had an icky virus as well. After day 5, they switched him to different drops and that helped a lot. He also broke out in petechiea (non-blanching spots). It is where the blood vessels were breaking. They had run some blood work and everything look good. They think it was due to the virus he had. The night before going to hotel, I ended up with pink eye and then Friday night of that week, Levi got pink eye. So the pink eye part was no fun. Levi's was really bad. We were suppose to head over to Pine City for my nieces birthday party that Sunday, but Levi needed to get home to get in with the doctor. Gavin lucked out and didn't catch the pink eye.

Halloween

The boys had a lot of fun with Halloween this year.

Pumpkin Carving!

The boys also did a gingerbread haunted house. It was actually kinda difficult to do. Some of the materials did not work very good, but they had fun anyway.

We had grandpa and grandpa (Levi's parents) and Joan over for supper. It was "make your own pizza" night. I think everyone enjoyed making their own pizza and they turned out really yummy!

Gavin, Kai and Jace

Grandma and Grandpa took Gavin and Jace around trick or treating while Levi and I stayed behind to pass out candy and hang out with Kai. The boys had a lot of fun and ended up with a lot of candy by the end of the night. We had a good turn out for trick or treaters. We counted 56 of them!

Random pictures

Visiting great grandma (great, great to the boys).

Kai sitting on great grandma's couch eating fries.

Leave it up to Kai to climb in the oddest spots. He always plays with the stuff in this cupboard, but this was the first time he climbed in. Then he did get stuck and Levi had to get him out.

Jace

Kai really enjoys getting his back rubbed!

Kai and his new highchair. This one is one that will grow with him. We really like it and it is nice and sturdy. Kai also really likes it!