Friday, February 3, 2012
movin'
I just found this great song.... enjoying some good music and crazy, fun dancing (that I'd only do while home alone) and painting... its hard to keep my brush steady with such fun beats....
Medical Update
We are in need of pictures on here... next post, whenever that may be...
So this past week, we've had some follow up appointments.
Monday, it was the Sleep Study results... Peter's apnea had improved from 5X/hour to 2X/hour... but the doctor still recommended CPAP (a mask you wear at night that's hooked up to a machine that keeps your airway open... positive airway pressure)... great. There was immediate prayer for the Lord to help me be open to the idea. They told us a tentative plan to get him used to it, which by the way included another sleep study for the first night hooked up to CPAP (um, I don't think that is gonna fly with the boy and I DO NOT blame him.) So we were gonna play it by ear as the appointments went on...
Tuesday, it was our first neurology appt since April (thank you, Lord!).... just to follow up. Obviously, he has been doing really well. We can not say that we have seen any seizure activity so we are continuing with more of the same... which is great. Please continue to pray that would be true. Lord, heal our boy! My main gripe about neuro appts/assessments is that they feel 90% subjective based on our report.... argh. Altho Peter has been doing so well in general in the last few months, in the last week he has had more behavioral problems in my opinion... more impulsive, not a lot of self control, a complainer, out of that "mature" phase I mentioned recently. So I never know what to make of it. I've never had another boy obviously, but there are times that he is just so different than our other little (tho she can have a case of the 2's lately, but smaller scale)... my data group is small and only includes two so I don't know exactly what to make of it. But we'll go with it. So the great part is that we could talk with his neurologist about his sleep study. She does not feel that his sleep study is "bad" enough that it plays into the picture with his seizures. So I guess that's good (and bad). She felt like CPAP sounded a bit extreme. So she told us she'd schedule us a consult with another neurologist who directs the sleep center at VCU.... that it may be a few months (after we'd have had to make the decision with the St Mary's doctor). Well, the VCU doctor himself left us a message yesterday!!! My jaw stayed on the ground the whole message. He was the first neurologist we saw at Peter's first admission last winter. We adored him but he only sees patients in the sleep center (and makes inpatient rounds). He's felt like this great & wonderful doctor that we just aren't "allowed" to see (and he left a voicemail for us!! WOW!)... SO... today I called him back. And talked to him, right away!! What?! This is SO rare for us! He was as wonderful as I remember... calm, kind, smart (really smart), fatherly. He said that he spoke with Peter's neurologist and reviewed his sleep study report and that he is "under-whelmed" with Peter's results. We do NOT need to treat him. His results were completely in the range of "normal" for his age. WOW! We are so relieved! It is such a blessing (and answer to prayer!) that we do not have to "decide" whether to follow the original doctor's recommendations. I feel really good about it. More still, I talked with him about Peter's daytime breathing. He said that is also not of concern to him. It sounds familiar (he is the first doctor to say that after telling five doctors about it).... it could be related to his muscle tone as I suspected but its not detrimental to his health (only my nerves). ;) So my plan is to have him just sit in an upright chair (to encourage better posture) to watch TV and ban him from the couch (tho, I better have low expectations for this)... I am learning that my "black and white wiring" rarely really works. Ah, sanctification...
Peter and Lily are off for the weekend with Maw and Paw to see Copper and ride the tractor... oh, fun childhood and fun weekend with my favorite person. OH, and painting! (pictures to come sometime... who knows when....) and a trip to the river house!!
So this past week, we've had some follow up appointments.
Monday, it was the Sleep Study results... Peter's apnea had improved from 5X/hour to 2X/hour... but the doctor still recommended CPAP (a mask you wear at night that's hooked up to a machine that keeps your airway open... positive airway pressure)... great. There was immediate prayer for the Lord to help me be open to the idea. They told us a tentative plan to get him used to it, which by the way included another sleep study for the first night hooked up to CPAP (um, I don't think that is gonna fly with the boy and I DO NOT blame him.) So we were gonna play it by ear as the appointments went on...
Tuesday, it was our first neurology appt since April (thank you, Lord!).... just to follow up. Obviously, he has been doing really well. We can not say that we have seen any seizure activity so we are continuing with more of the same... which is great. Please continue to pray that would be true. Lord, heal our boy! My main gripe about neuro appts/assessments is that they feel 90% subjective based on our report.... argh. Altho Peter has been doing so well in general in the last few months, in the last week he has had more behavioral problems in my opinion... more impulsive, not a lot of self control, a complainer, out of that "mature" phase I mentioned recently. So I never know what to make of it. I've never had another boy obviously, but there are times that he is just so different than our other little (tho she can have a case of the 2's lately, but smaller scale)... my data group is small and only includes two so I don't know exactly what to make of it. But we'll go with it. So the great part is that we could talk with his neurologist about his sleep study. She does not feel that his sleep study is "bad" enough that it plays into the picture with his seizures. So I guess that's good (and bad). She felt like CPAP sounded a bit extreme. So she told us she'd schedule us a consult with another neurologist who directs the sleep center at VCU.... that it may be a few months (after we'd have had to make the decision with the St Mary's doctor). Well, the VCU doctor himself left us a message yesterday!!! My jaw stayed on the ground the whole message. He was the first neurologist we saw at Peter's first admission last winter. We adored him but he only sees patients in the sleep center (and makes inpatient rounds). He's felt like this great & wonderful doctor that we just aren't "allowed" to see (and he left a voicemail for us!! WOW!)... SO... today I called him back. And talked to him, right away!! What?! This is SO rare for us! He was as wonderful as I remember... calm, kind, smart (really smart), fatherly. He said that he spoke with Peter's neurologist and reviewed his sleep study report and that he is "under-whelmed" with Peter's results. We do NOT need to treat him. His results were completely in the range of "normal" for his age. WOW! We are so relieved! It is such a blessing (and answer to prayer!) that we do not have to "decide" whether to follow the original doctor's recommendations. I feel really good about it. More still, I talked with him about Peter's daytime breathing. He said that is also not of concern to him. It sounds familiar (he is the first doctor to say that after telling five doctors about it).... it could be related to his muscle tone as I suspected but its not detrimental to his health (only my nerves). ;) So my plan is to have him just sit in an upright chair (to encourage better posture) to watch TV and ban him from the couch (tho, I better have low expectations for this)... I am learning that my "black and white wiring" rarely really works. Ah, sanctification...
Peter and Lily are off for the weekend with Maw and Paw to see Copper and ride the tractor... oh, fun childhood and fun weekend with my favorite person. OH, and painting! (pictures to come sometime... who knows when....) and a trip to the river house!!
Saturday, January 28, 2012
1 year ago
Peter was at the hospital for that first admission.
So thankful for where we are one year later!
Its bound to be a GREAT, amazing weekend!
My heart feels such relief!
Its bound to be a GREAT, amazing weekend!
My heart feels such relief!
Thursday, January 26, 2012
Monday, January 23, 2012
Middle of the night
Hanging out in the boy's sleep study room*. About 1:30am, I gave up attempts at sleeping. I get too restless and my legs are aching. Trying to sleep means thinking about that so a distraction sounds better. I wish this could be our last ever "tail" (and overnight together in a medical facility) but I can't be sure of that. But I've come up with best case scenario (as if I could be God).... One more EEG in 2 years after being seizure free all that time to find out his EEG is PERFECT. Wouldn't that be GREAT! Lord, hear our prayer and thanks for all the ways You already have!
I guess it is sorta nice to have a few hours of quiet peace.
*This study may be a little of a luxury (if that's possible) to follow up on his apnea after T&A because of his neuro history. And we are getting it in at the end of insurance year... Woohoo. We know how to have a good time.
*This study may be a little of a luxury (if that's possible) to follow up on his apnea after T&A because of his neuro history. And we are getting it in at the end of insurance year... Woohoo. We know how to have a good time.
Saturday, January 21, 2012
To Remember...
We've talked a little recently with Peter about him going to school when he is 6 and riding the school bus (his dream!), not taking a nap, etc. This week I was talking with him one night at bedtime. I said, "Peter, you know that Mommy is going to be really sad when you go to school." (Those of you who know Peter well will be able to hear him say this...) His response was, "Don't worry, Mommy. Lily will take care of you."
************
If Lily is crying after bedtime Mike can go up to her room and say, "Lily, do you want me to tell Mommy something for you?" Lily will laugh with happiness and say "yes". (Do other people's kids laugh when they are getting something they are excited about?) Then Mike will say, "Do you want me to tell Mommy that you love her?" Lily will say "Yes", put her thumb in her mouth, lay down and shut off the cries like they were never there. (Vis versa works too... she likes for me to tell Mike that she loves him or that she wants to go to Dog Wood Park, go on a bike ride, or go on the bus.)
It is such an interesting thing to learn your kids ways and what makes them tick, what works to comfort them, what assures them that they are known and understood.
***********
Overheard this weekend:
Peter speaking to Lily (we all know Lily likes to pretend to be a Mommy):
"Come on, Mama, get on the firetruck!!"
(the way he said 'Mama', I pictured a large lady with an apron tucked b/t her bosoms and belly... but he was talking to little petite Lily!)
***********
Overheard this weekend:
Peter speaking to Lily (we all know Lily likes to pretend to be a Mommy):
"Come on, Mama, get on the firetruck!!"
(the way he said 'Mama', I pictured a large lady with an apron tucked b/t her bosoms and belly... but he was talking to little petite Lily!)
Friday, January 20, 2012
buddies
found this on Mike's phone...its from when they went camping over Christmas break.
how very cute and handsome are they?!
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