OK so yesterday I finally made the call to schedule Rylee's MRI. We will check in at the St Francis Children's Hospital at 9:30am on Feb 9th. Not bad (on the time). And I can nurse her up until 7:30. I was pleasantly surprised by that.
So please pray for us between now and then and I will send a big fat reminder that day for prayer because I'm sure this momma is going to be a nervous wreck when they take my precious girl away.
Pray that we have clarity with the MRI in knowing what her diagnosis is. Pray that we will have wisdom in her treatment.
Eating a little Orville Redenbacher Salt and Pepper pop corn as I type this post--a new fav!
Wednesday, January 21, 2009
Monday, January 12, 2009
Gunner's 3 year old check up
Last week Gunner had his 3 year check up with Dr Raley.
He is 40.3 inches high and 34 pounds and 14 ounces. He is a tall and slim.
Amoung other things I asked Dr Raley when we could expect him to have some self control. Raley told me 'when he's 25, if I'm lucky and that's pushing it'. Despite Raley's response we are working on self control and boy is it hard.
On the way home I was talking to Gunner and said 'Dr Raley takes good care of us. Doesn't he?' Gunner responds 'no mommy Jesus takes good care of us.' I should have left it at that but asked him why Jesus takes good care of us. I was looking for 'because he loves us'. I got something about Jesus coming down in a car and taking care of us! He cracks me up.
He is 40.3 inches high and 34 pounds and 14 ounces. He is a tall and slim.
Amoung other things I asked Dr Raley when we could expect him to have some self control. Raley told me 'when he's 25, if I'm lucky and that's pushing it'. Despite Raley's response we are working on self control and boy is it hard.
On the way home I was talking to Gunner and said 'Dr Raley takes good care of us. Doesn't he?' Gunner responds 'no mommy Jesus takes good care of us.' I should have left it at that but asked him why Jesus takes good care of us. I was looking for 'because he loves us'. I got something about Jesus coming down in a car and taking care of us! He cracks me up.
Monday, January 5, 2009
Rylee's Little Rock Appointment
We have returned from Rylee's appointment and I thought I would update here rather than emailing/facebooking everyone.
The short answer is we don't know anything. Doesn't sound too comforting but actually it is in some strange way. Keep in mind Dr Raley set the appointment up for us so we went into it a little blind.
Yesterday we saw Dr Jay Kincannon, a very sweet man (I'm sure he'd be thrilled to be described as sweet). He is, of all things, a Professor of Dermatology & Pediatrics specializing in Vascular Anomolies. This was surprise #1. I assumed we would be seeing a cardiovascular doctor. He is not convinced that it is an AV malformation; he also doesn't think it’s a hemangioma. He noted that the bone structure is actually larger. That was surprise #2. No one has ever mentioned her bone structure being involved—only veins and arteries. It seems to be larger from the shoulder blade all the way to the hand. Because of the bone structure being in the mix, he paged a Pediatric Orthopedic doctor and reviewed her status. That Dr agreed that it didn’t sound like an AVM or hemangioma. He added that we should have an ultrasound done of the renal system as somehow the kidneys could be involved in the diagnosis. That was surprise #3. Who would have thought kidneys might be involved.
Both Dr’s said it could be a number of things but as we have been told from the beginning the ONLY way to know anything is to have an MRI. That can be done in Tulsa since 'a scan is a scan'. If we end up going for treatment somewhere and they are not happy with the MRI done here, we can scan again.
Dr Raley’s office let me know this morning that St Francis will be calling to schedule the MRI and ultrasound. So the ball is rolling on that.
Thanks for your prayer and concern. It is hard to know what to think. It is sounding more like it may be something that is not treatable. That is ok—especially if is not life altering.
The short answer is we don't know anything. Doesn't sound too comforting but actually it is in some strange way. Keep in mind Dr Raley set the appointment up for us so we went into it a little blind.
Yesterday we saw Dr Jay Kincannon, a very sweet man (I'm sure he'd be thrilled to be described as sweet). He is, of all things, a Professor of Dermatology & Pediatrics specializing in Vascular Anomolies. This was surprise #1. I assumed we would be seeing a cardiovascular doctor. He is not convinced that it is an AV malformation; he also doesn't think it’s a hemangioma. He noted that the bone structure is actually larger. That was surprise #2. No one has ever mentioned her bone structure being involved—only veins and arteries. It seems to be larger from the shoulder blade all the way to the hand. Because of the bone structure being in the mix, he paged a Pediatric Orthopedic doctor and reviewed her status. That Dr agreed that it didn’t sound like an AVM or hemangioma. He added that we should have an ultrasound done of the renal system as somehow the kidneys could be involved in the diagnosis. That was surprise #3. Who would have thought kidneys might be involved.
Both Dr’s said it could be a number of things but as we have been told from the beginning the ONLY way to know anything is to have an MRI. That can be done in Tulsa since 'a scan is a scan'. If we end up going for treatment somewhere and they are not happy with the MRI done here, we can scan again.
Dr Raley’s office let me know this morning that St Francis will be calling to schedule the MRI and ultrasound. So the ball is rolling on that.
Thanks for your prayer and concern. It is hard to know what to think. It is sounding more like it may be something that is not treatable. That is ok—especially if is not life altering.
Sunday, January 4, 2009
Poop presents
A couple of weeks after Rylee was born Ed and I decided it was time to get serious about potty training. Ed and I had differing opinions on the method but we agreed on the outcome we were trying to attain. Ed thought we should give presents daily. I felt like it was a little overboard. After a heated discussion it was decided that Ed's plan was the way to go. All that is beside the point except to say that Ed's method seems to have brought success. Gunner has been wearing big boy pants for several weeks now and has had very few accidents. Well, I ran out of .88 items to buy at Walmart so I just quit buying them. Thus we had no presents. Gunner continued to poop and mentioned presents when he was on the potty but quickly forgot by the time he pulled up his pants, flushed, shut the lid and washed his hands.
Saturday Gunner and Ed were running around together and out of the blue Gunner said 'Daddy we need to go get my presents. Remember I pooped and we didn't have any presents. Remember Daddy I pooped in the potty and made you and Mommy so happy.' Gunner got another present, imagine that!
Gunner has also had a few other moments the past few days:
After being put in time out on the couch and told by Ed to 'think about' what he had done, Gunner puts his hand to his chin and says 'hum'.
As we were walking downstairs one morning after the holidays Gunner says 'Mommy we can't play or ride bikes without Daddy'. That was a boring day for us!
While watching Elf as they are singing Santa Clause Is Coming To Town, Gunner sings loud for all to hear 'Santa Clause is coming to my house!'
Saturday Gunner and Ed were running around together and out of the blue Gunner said 'Daddy we need to go get my presents. Remember I pooped and we didn't have any presents. Remember Daddy I pooped in the potty and made you and Mommy so happy.' Gunner got another present, imagine that!
Gunner has also had a few other moments the past few days:
After being put in time out on the couch and told by Ed to 'think about' what he had done, Gunner puts his hand to his chin and says 'hum'.
As we were walking downstairs one morning after the holidays Gunner says 'Mommy we can't play or ride bikes without Daddy'. That was a boring day for us!
While watching Elf as they are singing Santa Clause Is Coming To Town, Gunner sings loud for all to hear 'Santa Clause is coming to my house!'
Rylee's Arm
Tomorrow we will go to Little Rock for Rylee's first appointment for her arm. We don't really know what to expect at all. We don't know if they will run any tests or if they will just do a physical exam. I am surprisingly calm.
Praying for healing. Praying for peace and wisdom. Praying for her doctors wisdom. Praying for a safe trip to Little Rock.
I will update when we return.
Praying for healing. Praying for peace and wisdom. Praying for her doctors wisdom. Praying for a safe trip to Little Rock.
I will update when we return.
Thursday, January 1, 2009
Tuesday, December 30, 2008
One more try
So I started this blog almost (or over, not sure which one) two years ago and didn't really get into it too much. I had good intentions and just never felt like I had much to blog about. Well--as Gunner gets older, I get older. He is a pretty funny kid and I am a very forgetful person. So I thought I would take another stab at it for posterity (please tell me there is spell check somewhere on this thing).
I've spent time tonight picking out just the right back ground and family pic so I'm running out of steam. More to come--I promise!
I've spent time tonight picking out just the right back ground and family pic so I'm running out of steam. More to come--I promise!
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