Last Thursday was the 7th anniversary of one of the happiest days of my life! It was the day we met Sarah and Selah! This picture is so precious to me. I'd just gotten off a night train and hadn't even brushed my teeth but it didn't matter I had my girls!
Jon held Sarah and sang to her She was listening so attentively.
We tried to recreate it-she's grown a bit LOL
I love these people!
THIS picture is Sarah walking with her daddy to the car after we ate lunch on Sunday!
Well the Sam medical drama continues. Wednesday he had an appointment with the sleep specialist again. This time we were able to get an appointment with the head of the department. She had some creative ideas for Sam. She ordered him an hospital bed so he can sleep in a more upright position. She also wants him to try Singular-sometimes it will shrink the adenoid down. She feels his major issue is tone. Surgery might help but probably wouldn't help much. She is also sending him to a facial/cranial surgeon. She noticed that his chin recedes-honestly we had never noticed it. So this doctor may have a brace he can wear at night or he may recommend surgery. I doubt very seriously we would do the surgery. The Doctor is very concerned and said Sam's apnea is very bad-one of the worst. He could easily die from it.
Not to get too dramatic but last year I told our pediatrician I felt that death was hovering over Sam. those were my exact words. Our doctor has known me for a long time and knows I am not too crazy and I'm not dramatic. In fact I tend to down play things He took me serious and ran a bunch of tests on Sam and sent us to several specialists. It took months to get Sam in for a sleep study and now months later to get some real help. (he can't use a c-pap because of the air pressure-it could blow out his eye) There was a time I had Sam sleep with us because I was so worried about him at night. Since October we've at least had the pulse/oxygen alarm on him so we could run to him if there was a problem. The doctor was very concerned-almost frightening telling us of all the problems Sam could encounter.
In the long run sleep apnea kills by taxing the heart. So she sent us back to Sam's cardiologist who had dismissed him last year because he was doing so good. The cardiologist said his heart and lungs were fine now but there could be a problem long term.
Here's some cute pictures my friend took at breakfast before we met with the doctor.
The doctor is adamant that Sam is not to gain any more weight. We've been told he is just about finishing growing (they can tell by the growth plates in their legs) He is about 4"8 just about where we were told he'd be as an adult. Sam is not a huge fan of exercise! We think walking might hurt a bit since his legs are drawn up but he likes to jump on the trampoline some.
Sarah loves to exercise!!
With everything we are finding out about Sam we are going to have Sarah tested too. She doesn't snore but many kids with special needs have sleep apnea. Plus it is time for her to have her yearly check up and lab work. She is not very good with doctors and tends to freak out on us. We have lots of medical appointments coming up in the next couple of months.
And by the way.... I started the thyroid medicine a week ago tonight and have already lost 6 pounds!!!! It's a little creepy but in a fun way to get on the scale and see a little weight loss every day. I don't feel any different but maybe I will- I don't care I just love the weight loss LOL
I also have sleep apnea as I have shared but a very light case. I'm wearing a C-pap. It has been challenging. I had an appointment also this week and they congratulated me on wearing the mask. The tech reads the report. But I have had many problems with it. I first was given a nose mask that fits inside the nose. I had to have the Extra Small one because I have a small nose LOL It's too big so it's cut the inside of my nose! OW! So they switched me to a mask that goes over the outside of the nose and it seals the nose.....yep NO! In the doctor's office it was ok- at home I've fought it...literally! I took it off the first night and second night in my sleep. I was doing that with the other mask but not as bad. I think I'll go back to the nose cutting one!!! I'm trying my best to use it.
Well Sarah and I are on the back porch and it's pouring rain. It's the most peaceful place to be -love hearing the rain on the roof. I love rain!!!! We are going to relax out here for awhile then we are eating chicken & dumplings for supper talk about comfort :)
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