We had a wonderful Thanksgiving. We are so thankful for good family.
Joseph brought his girlfriend Meagan. She is such a sweet girl and she was a nice addition. I appreciate how Penny (my mother-in-law) always makes everyone feel so welcome. Meagan was just like the part of the family; no beats were skipped......
Hayden is so darn skinny and you would never know it was possible for as much as that kid can put away. He enjoyed 2nd and 3rds and two slices of pie. There is something satisfying about seeing a good eater for some reason.
Simon licked some lemon cream cheese pie and some fruit salad off his lips. He even allowed me to put it all on his lips with a spoon. There was a time when this kid wouldn't even play with a spoon in therapy. He'd play with the knives, the forks; but never a spoon. It was great. He also had some cranberry juice mixed with 7-up in a dixie cup and let me help him drink from the cup. He didn't open up, but again allowed the cup and the liquid touch his lips. These are HUGE breakthroughs that only a tube mom can really appreciate I think; but we invite you to celebrate with us.
I am not a Black Friday shopper so I went to bed at a good time and slept for 8 whole hours in a row. It felt great. I am at work and its just a nice quiet day. I'm thankful for those days. Once you have a house full of boys I think a quiet place anywhere feels really nice. I did manage to get some Christmas shopping done. I considered for a split second to get Simon a motorized Jeep LOL He's sitting in chairs well now so I thought how much fun for him! Then I realized there were no side supports and that the fun to be had was probably mine, not his. So I think we are going to check out the Tonka Chuck. It looks like just the sort of thing Simon would enjoy. He can hit it and bang it and throw it and it will talk to him and vibrate. I can't imagine a better choice.
I know we don't need special days to remember to be thankful, but those days help us to remember. I am thankful for so much. I have great family and friends around me when I need those shoulders and to whom I can be a shoulder which is equally as rewarding. I think about how far Simon has come and all his struggles and it hit me: Sometimes those steps backward are just what is needed to prepare for the propel forward. I can not deny he is progressing all the time. Even with the set backs, getting some of those things treated correctly is just what he needs to take those next few steps forward. He'll get where he needs to be when he needs to get there; just like we all do.
Friday, November 26, 2010
Tuesday, November 16, 2010
Simon Updates
This is copied and pasted from Simon's carepages:
1st Simon’s sleep study came back with him in the severe sleep apnea category. Both Central and Obstructive. Primarily central but he does have a slight obstruction. The question is what. So, he will be going in Jan 4th for a scope of his tongue, skull, voicebox and just his whole airway; if they find something obstructing it will be removed (except for the skull and tongue) and if they DON’T find anything else obstructing then his tonsil’s and upper adenoids will be removed; though at this time they do not appear to be the problem. This will not cure the sleep apnea, it will hopefully just remove the obstructive variable; his brain is still not telling him to breath. But removing the obstruction may improve it enough that we will only have to watch the central issue; if it doesn’t improve then we will be looking at cpap or bipap. We’re really hoping for neither of those. He will be staying overnight.
2nd thing. We had a physiatrist appt this past week and Simon’s small feet were brought up by us as a possible deterrent to him walking in the future. His feel will not prevent him from walking. Right now it’s his strength and desire. There is a strong possibility that Simon won’t walk. The rule is sitting up unassisted by 2 means you'll walk assisted by 5; he's not quite sitting up on his own yet. We are not surprised nor devastated at this news so we are not in need of support over this issue, it just is what it is. We do have some tools we’ll be using to help strengthen his legs and trunk. Simon may walk, no one knows really, but he has absolutely no desire to try and a huge part of that may be security due to a lack of strength; then again he may like being carted around. So we are going to help him get stronger through additional use of his stander, and do what Simon wants on Simon’s timeline.
3rd and oldest thing. Simon was having a lot of trouble with increased seizures and starting to get into those scary ones. He has started lamictial and has been on it about a month. It seems to be doing the trick. Once we get his sleeping more productive I’m hoping that should make a big difference overall in health and development.
We are extremely blessed that he has been healthy in so many ways. All of these things are just a normal part of a child with challenges like Simon’s and we are very grateful to have him with us and healthy. I am knocking on wood right now…..
He is so much fun and such a joy, he’s worth every hiccup and worry we have to go through on these occasions. Though we have asked him to stop after these.... ; P
1st Simon’s sleep study came back with him in the severe sleep apnea category. Both Central and Obstructive. Primarily central but he does have a slight obstruction. The question is what. So, he will be going in Jan 4th for a scope of his tongue, skull, voicebox and just his whole airway; if they find something obstructing it will be removed (except for the skull and tongue) and if they DON’T find anything else obstructing then his tonsil’s and upper adenoids will be removed; though at this time they do not appear to be the problem. This will not cure the sleep apnea, it will hopefully just remove the obstructive variable; his brain is still not telling him to breath. But removing the obstruction may improve it enough that we will only have to watch the central issue; if it doesn’t improve then we will be looking at cpap or bipap. We’re really hoping for neither of those. He will be staying overnight.
2nd thing. We had a physiatrist appt this past week and Simon’s small feet were brought up by us as a possible deterrent to him walking in the future. His feel will not prevent him from walking. Right now it’s his strength and desire. There is a strong possibility that Simon won’t walk. The rule is sitting up unassisted by 2 means you'll walk assisted by 5; he's not quite sitting up on his own yet. We are not surprised nor devastated at this news so we are not in need of support over this issue, it just is what it is. We do have some tools we’ll be using to help strengthen his legs and trunk. Simon may walk, no one knows really, but he has absolutely no desire to try and a huge part of that may be security due to a lack of strength; then again he may like being carted around. So we are going to help him get stronger through additional use of his stander, and do what Simon wants on Simon’s timeline.
3rd and oldest thing. Simon was having a lot of trouble with increased seizures and starting to get into those scary ones. He has started lamictial and has been on it about a month. It seems to be doing the trick. Once we get his sleeping more productive I’m hoping that should make a big difference overall in health and development.
We are extremely blessed that he has been healthy in so many ways. All of these things are just a normal part of a child with challenges like Simon’s and we are very grateful to have him with us and healthy. I am knocking on wood right now…..
He is so much fun and such a joy, he’s worth every hiccup and worry we have to go through on these occasions. Though we have asked him to stop after these.... ; P
Monday, November 15, 2010
Our First Post
We are blessed with three boys. Joseph, Hayden and Simon. They all keep us on our toes in many different ways. Joseph is 17 and getting ready to start his adult life soon. Hayden is 15 and just started highschool and finding out who he wants to be. Simon is 5 and has Trisomy 11Q Monsomy 20P; he has been instrumental in the wonderful men our two oldest boys are becoming justfor being him and adding a wonderful component to our family of learning compassion and unconditional love. This blog will be about the journey of our boys. Probably mainly Simon as he leads the most exciting life of all of us.
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