Rylee's Arm (rewind...)

I'm feeling bad because a couple of you had no idea there was something wrong with Rylee's arm. So here is the original email I sent out (keep in mind some things have changed since this I sent the email). I am also including a picture so you can see the difference. We have our MRI scheduled for Feb 9th. We will know more then.

I'm sure some of you know there is a problem with Rylee's left forearm. I wanted to try to explain what I can. We don't know much except she has an AV malformation in her forearm. Basically her arteries and her veins did not form correctly. To know the extent of the damage we will have to do an MRI which will require her to be put to sleep. Not really sure how soon we will do that. We will probably end up going to Little Rock for testing and treatment. If you look up AV malformation on the Internet it is scary so I'm limiting my 'research' time. Most of what you find talks about the malformation being in the brain which is far more serious. Her left arm and hand are visible larger than her right. As I understand it, depending on the treatment, this is something that will be visible her entire life.Please pray for us. We will have a lot of tough decision to make in the months to come. Pray also for Rylee's health and healing.

It's cruddy outside and inside

Today I woke up with a dizzy headache. The room was spinning even when I was laying down. And when I tried to get up I would just stumble like a drunk. Ed went to work with me in bed, Rylee in her bed and Gunner downstairs watching TV. When Rylee woke up I had to get out of bed (I was thinking I would be better by then but no such luck). I stumbled to her room and down the stairs and took my place in my 'facebook chair' as Ed refers to it. Started to try to feed Rylee and about fell out of the chair when I looked down at her. It put a strain on my neck I could hardly bear. I decided I felt bad enough to have Ed take me to Dr Newcomb (my chiropractor). I have had a couple of spells like this, Dr Newcomb said this was as bad as my first which was really bad. That time I felt terrible for about a week. (Some of you may remember me emailing you asking for you to pray for me. I thought for sure I had a brain tumor and was dying!) I am praying it doesn't last that long this time.

So here I sit making this entry to my blog wondering what do mom's do when they are sick or out of commission? Generally I have my mom come take care of me and the kids but she is iced in at some friends house about an hour away so she can't come to my rescue. Poor Gunner doesn't understand when mommy feel bad but he has done pretty good today...lots of TV time!

Let me just say if I ever offer to help you out with your kids when you are sick I really really mean it (Michelle Clark). Appreciate your prayers for quick healing.

Ed's Cheezy 37th Birthday!

So if you were at dinner at the church on Wednesday night you got to witness me and my cheesiness. Ed's birthday was Wednesday and Gunner was into it! When Gunner woke up Wednesday morning he wanted to yell 'surprise' when he saw Ed. He was telling me he would count one, two, three and then say surprise. I kept trying to get him to whisper while he was telling me his plan but getting Gunner to whisper is, well, impossible (any pointers on teaching a 3 year old to whisper is much appreciated). Anyway he yelled 'surprise' just as he had planned and of course Ed got a kick out of it.
Ed went to work and the fun began. Rylee decided to sleep in so Gunner and I made Ed a strawberry cake--his favorite. Gunner had a ball and as usual was thrilled to be doing something special for his daddy. Next was our trip to Target to get candles and a present. We secured the candles, Toy Story and a Wii Fit. The excitement was building and Gunner could hardly wait until he could give Ed his cake and presents. The only problem was, since it was Wednesday me and the kids would be at church and Ed was planning on working late then going to church to play basketball. Gunner would be in bed before Ed came home. So I called Ed and told him Gunner had made a cake for him and was going to be very disappointed if he didn't get to share it with him so we decided to celebrate at church. I felt like a major dork hauling in presents and a cake. Even a bigger dork when I pulled out the lighter and lit the 24 candles for Ed's 37th birthday. But to see Gunner's face made it worth it. We shared our cake with the Clarks and the Vincents and had our self a little party in the middle of the gym. I thought taking pictures would just be over the top so there are no pics to share!
The Wii Fit is still in the box. Ed hasn't had the energy to get it out. I told him I was no expert on exercise but I had heard that you gained energy by working out!
We watched Toy Story as a family last night. Gunner's still a little young and for a little boy who usually takes handfuls of toys to bed took very few last night. I really think it freaked him out!

Rylee's MRI is scheduled

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!

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.

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.

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!'

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.

Ed decided to take some pictures of Rylee tonight with her baby doll. Now he has her on the floor in her bumbo seat and is driving a remote control car for her entertainment. The car is pulling her baby doll around by her hair. I thought only brothers were supposed to torture baby dolls!