So much has gone on in the past couple of weeks. First of all I can't believe the boys have been Home 5 weeks already!!! They are both adjusting so well & are learning new things every day. Charlie L-O-V-E's to go to school. Every day we pull up to the car rider line & he signs PLAY and claps his hands and say YAY!!! Puts his backpack on his back, picks up his lunch box and waves bye to Levi & blows him a kiss. Then Levi cries:( Poor little guy. I make 4 stops to drop off kids and he cries everytime someone gets out of the van. lol We are still desperately trying to find something to help Charlie stop putting his entire hand in his mouth & sliming everything & everyone. Suggestions are welcome:) Levi is still getting meds every 6hrs through his picc line. His labs have looked good, but he has had fever for 4 days. They have not been able to find the source, but think it may be viral after he broke out in rash yesterday. He has had a more extensive Echo done on his heart and the infection looks the same, plus he had a small amount of fluid around his heart. But the Good News is the cardiologist thinks he may NOT need heart surgery!!!! It actually looks like there is a super thin membrane across the VSD. So he will continue to monitor him until after his oral surgery and then decide if he will need any intervention. Currently, he is scheduled to have surgery on Dec. 1st. The ENT will remove his tonsils, adenoids, and put tubes in his ears.(this is being done now to help the sleep apnea & get ride of infection) Then the Dentist will follow him to surgically remove his remaining rotten teeth. It will not be fun:( Please pray for these docs and especially for the anethesiologist that will be attending the surgery. He will spend at least one night in the hospital and then hopefully heal quickly and feel like a new man! What a good little patient he has become. He know's the routine now; holds his arm out, lets them do whatever they need to do. I am so proud of him!
Charlie Asleep at door. He might miss something!
Patiently waiting for Sis's B-day cake. Kinda....
I've been wondering where you have all been. Glad your computer is fixed..I miss seeing your updates!
ReplyDeleteI will continue to pray for dear Levi. And I just have to tell you that picture with Charlie sleeping at the door just made me laugh. My Daniel does exactly the same thing. He goes to bed at night in his bed...but somehow every morning he's sleeping right by the door....sucking his thumb just like Charlie. I'll try and get a pic, so funny!!!!!
Good to hear and update! (don't remember if I've commented before, but I've been following for awhile. I'm Leah, mom to a few, one of them 14 year old Angela with DS, and bringing home 10 year old Axel with DS in a couple weeks.) Somewhere I have a picture of Angela around the same age sleeping by the door with one eye. She knew everyone's feet in the house! LOL With the T&A Surgery, it usually takes a good 3 weeks for them to start feeling decent again. I don't remember if you have a bio child with DS who you've been through this with before or not, but the number one thing to remember is even when they SEEM to be feeling ok, give them the pain meds ANYWAY, ON SCHEDULE. I didn't listen well enough to the other parents who told me this, and Angela ended up in the ER back on IV fluids because she was in too much pain to drink. :-( And that was with an 11 year old excellent communicator. The teeth extractions though, that will actually be the easier part! We'll be saying prayers for him that his recovery is as quick and smooth as possible.
ReplyDeleteHi Wendy! So happy that things are going well. Bella still does the thing where she rubs her nose with the palm of her hand and then right up into the hair. I think I saw all the boys in their groupa do this....so she was just one of the boys! LOVE the picture of Charlie sleeping by the door. That is precious!
ReplyDeleteBella goes in on Monday for her t & a surgery. I am glad you commented on here, Leah, because I did not know that about pain meds. Grace had it done so many years ago, I forgot about that.
Love, Paula
Oh my, so happy to hear the boys are doing well! So funny about Charlie! The picture of Levi, he looks sooo different and so great!! You seriously need to post more pics of those boys!!!! :))
ReplyDeleteI don't know if Charlie is at all motivated by food, but you could possibly catch him putting his hand in his mouth, ( I said MAYBE!! I know "catching" kids before or as they do something is darn near impossible), and give him a raisen or something relatively healthy. This is tricky- not to reward the slimy hand syndrome- but because there is a connection between brain and jaw stimulation, also if he finds food pleasurable, then he will be in a calm state ( which is optimal teaching time according to the attachment training we received with our wondergirl)in order for you to do some simple training. Eye contact as you are giving him the "treat" and simple instructions like," Mouths are for eating" might be helpful. It's good training ideas but I have no idea if this is helpful at all. These kind of training strategies have been pivitol with our girl, to change behaviors and motivate interaction and attachment. God Bless!
ReplyDeleteI mailed last night. I realized that I forgot the most important part of raisen training- CONSISTANCY. Could be alot of raisens- could solve the constipation problem! Email me!
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