Pierce Party of 5
Wednesday, July 25, 2012
Gungor "God is not a white Man"
saw this video at church a few weeks ago. was given a similar disclaimer as the one Im about to give. this video is NOT saying sin is OK. it is NOT agreeing or disagreeing with any particular view. it is just making the point that sometimes we "put God in a box". sometimes we think the way we do something, or the way our church does something or our culture does something is the "right" way. sometimes we fail to realize our traditions, while they may not be wrong, are not biblical.
sin is NOT OK. God gave us guidelines to follow for our own good. rules to help us live more abundant lives, to save us from unnecessary hurt. not rules to follow to pat ourselves on the back when we get them right and then point at others to show them how wrong they are.
people are all different forms of messed up. including me. God loves us all, just as a parent loves their children even when they are not perfect. could you imagine if i decided i didn't love Presley or Miley anymore because they messed up or disagreed with me or disobeyed me. that's absurd. to think God loves any of His children less than He loves you or me is just as absurd.
make wise choices. avoid sinful behavior. be good examples. but let God judge. love people despite your disagreeances and allow the Holy Spirit to do His job. love as an action, even when the warm and fuzzies are not there.
being a Christian means i believe in God,i believe Jesus died for me and saved my soul so that one day when this temporary life is over i will spend eternity with Him. period. by grace, not because i have somehow earned it. it does not mean that i have somehow achieved a position on a pedestal that makes me any better than anyone else. compare yourselves to the only Holy One, not me or any other Christian or you will certainly find yourselves disappointed. we are called to be the hands and feet of Jesus while on earth. study the Word and tell me how often your see Jesus playing the role of judge and how often you see Him pouring out unconditional love.
annnnnnd, that tangent is now over.
Tuesday, July 17, 2012
Presley update
We went to see Dr. Freedman today. She was great with Presley. Presleys eye pressure was 36 today. Too high. But she isn't having many symptoms so they are OK with that for now.
2 weeks ago we tried to do half of the blood pressure pill and her symptoms started to return so we went back on the whole pill. Dr. Freedman suggested that sometimes the glaucoma can "settle down" and stop causing the symptoms. So right now the plan is too start several new eye drops (now up to 5 different ones a day) and next week go back down to half a pill. after 2 weeks we are to email her and let her know if her symptoms are returning or if her eye is adjusting to the pressure. If she seems to adjust we will keep reducing medications and hope for the best.
She felt like this was the only alternative to surgery. I got the sense she didn't necessarily feel like it would work but that taking an eye out was such a huge ordeal (obviously) and that we should exhaust every option first, being that Presley is not in extreme pain right now.
So, I agree. Lucas and I certainly want to feel like we did everything we could to keep her eye. Though I feel stuck back in the "waiting game" , I trust that Gods timing is perfect.
When we walked out of the building today Presley said, "so im going to start some new eye drops and stop taking my pill?" and we said yep. She said, very matter of fact..."thats not going to work."
We will see. We will pray. It will work out.
Friday, July 13, 2012
Thursday, July 12, 2012
H is for...
H is for...
Happy Birthday Miley!
Happy Birthday Miley!
H is for...Hoons = Balloons
(the only present she asked for)
H is also for...
Hotch = Watch
Hool = Pool
Hogurt = Yogurt
Hock Hock = Rock Rock
Hotter = Water
Love that girl
Sunday, July 8, 2012
La Luna (Pixar)
We took Presley and Miley to see Brave today. Very cute movie. They showed a Pixar clip titled La Luna before the movie that made the whole thing worth it. I could only find a small clip of it, but you need to see the whole thing. I am aware that once you see it you may not get the same goosebumps as I did. God speaks to our hearts in different ways. But He used this simple cartoon to reassure me today. To tell me He has the parts that are "behind the scenes" under control. I have not doubted this. Just feels good to hear it sometimes.
crowns
"Therefore, my brothers, you whom I love and long for, my JOY and my CROWN...Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transends all understanding, will guard your hearts and your minds in Christ Jesus."
Philippians 4:1-7
instagrams
jello
sunbathing
strange obsession
birthday gifts from WV
july 4th
dragstrip ear "puffs"
parents magazine
sleepyhead
yuk
scary
baby daddy kisses
sidewalk chalk
catching butterflys...or sand
target trip
Thursday, July 5, 2012
convenient, lazy, overwhelmed, call it what you want but, we combined the girls birthday parties this year. Presley didn't care and Miley didn't know any better so we got away with it. it was sooooo hot, but we were able to stay inside for the most part and the kids had the pool in the backyard so we survived. they had a blast.
love the monogrammed cakes! (miley kept bumping into hers, so it has a few dents, but they were beautiful and yummy...by Delicious Bakery of course)
take a close look behind the party favors
Presley asks for a pinata every year, this year i remembered to get it.
by the time i got out to take a picture she had already busted it.
i didn't do a great job of getting pictures of everyone
thankful for our family and friends.
thankful for the unbelievable joy Presley and Miley bring to my life
Wednesday, June 20, 2012
I will go ahead and apologize for the detail overload here but I want to remember the details later for my own record keeping...
About 2 weeks ago Presley started having some strange symptoms. It started on a Thursday night with an episode of diarrhea and then seemed to feel better. That Friday I worked and when I got home Lucas said Presley had been very emotional all day and had refused to eat. That Saturday we were heading to the Lake and Presley would not eat breakfast so we stopped at McDonalds and got breakfast, while Lucas was pumping gas I looked back and saw Presley pouring tears and again asked her a million questions about why she was so sad. She said she didn't know she just wanted to go home. And of course didn't eat her McDonalds. Lucas told her she would be fine once she go to the Lake and started having fun. She seemed pretty normal and did end up having fun that day. Then before leaving she didn't want strombolis like everyone else and asked for some left over hot cakes. We heated those up and she took one bite and started crying and said her food kept feeling stuck in her throat and said she couldn't eat. Sunday morning, same thing she was sitting at her bowl of cereal twirling her spoon in it and quietly pouring tears. On the way to church she started crying and told me her belly was growling and she was hungry so we stopped at Biscuitville and got her a biscuit, she took one bite and said it was not good, so went across the street and got her a Happy Meal, couldn't eat it. In between this time there had been random complaints like, my belly hurts, I feel like I cant pee but I need to, I feel sad but I don't know why, and of course the crying. And by crying I mean finding her pouring tears with a blank sad face, not the screaming for attention type of crying.
So this is not my daughter. She is happy and independent and spunky and not a "cryer" or a drama queen (like her sister). By Tuesday the nurse in me was trying hard to put these symptoms together. There was no fever, her urine seemed OK, she had no belly tenderness, the complaints were so random. Now she was starting to say her left eye hurt. I assumed her eye probably hurt because of the consistent crying. I called her Pediatrician and they worked her in. I just wanted to check her urine and her sugar and rule out appendicitis and thought that would possibly give some answers or at least make me feel better and just chalk this up to a weird phase that will soon pass. Her doctor took one look at her eye and I could see panic in his face. He asked how long her eye had looked that way. I explained that 3 months ago her pupil blew and we took her to her pediatric eye doctor. He looked in her eye and said nothing looked more abnormal than before (this is her "broke eye" that has a destroyed retina in it already) and told us he just wanted to keep an eye on it and would see us again in 3 months. A few days later I called and told him the eye was red but had no discharge like typical pink eye would; he asked if she was having pain and the answer was no, so again told us to follow up later. Still never did any testing.
So back to Tuesday... Her Pediatrician, Dr. Bonney sent us to Alamance Eye to have her eye pressure checked. There we met Dr. Brennan. Her eye pressure was 46. It should be between 10-20. So we have a diagnosis; neovascular glaucoma. Turns out glaucoma can cause these other strange symptoms. Very rare in children. The vessels that twisted and destroyed Presley's retina have continued to twist around and now there is one on the surface of her eye that is blocking her tear system and thus causing the build up of pressure. She started taking 2 eye drops and a blood pressure medicine. By the next day when we followed up her pressure was down to 17. Dr. Brennan was pleased and backed us off of the bp medicine and just continued the drops. On Friday, again I was at work and Lucas called and said her eye was very red again and she was holding it in pain. So I left and we went back to the eye doctor. Started back on the bp medicine and again she feels much better.
3 months ago when I got no answers about her blown pupil I called Duke, and begged for an appointment with the retina specialist who put Presley to sleep when she was 3 to do the ultrasound to rule out cancer, which revealed the vessel problem. They finally agreed to see us but the soonest appointment was months away and turned out to be set for this Tuesday.
This Tuesday we went to Duke and because Presley's case is rare, I completely understand interns wanting to see her and assess her. But of course this means a child has to endure multiple exams before ever seeing the "real doctor". She was in a good mood and tolerated this much better than she did when she was 3. Dr. Toth decided she needs to see a doctor named Dr. Freedman who is a "world renowned pediatric glaucoma surgeon". She also works at Duke and we are scheduled to see her in 4 weeks. After speaking with Dr. Freedman, Dr. Toth explained that if we only had the glaucoma to deal with there would be more options but because Presley's retina problem and no vision in that eye, our options are limited because often treating one eye can affect the vision in the other eye. Her good eye could become "a sympathetic eye", and she cant afford to lose vision in both eyes obviously. They feel like the meds will only be a temporary fix and our only reasonable option is enucleation of the eye. In lay mans terms, the removal of her eye globe and a prosthetic eye in its place. The muscles would remain intact and it would function like a normal eye but without vision.
Wow. Really God? I choose to believe You when You say Your ways are not our ways, I choose to believe You have a plan and a greater purpose. Thankful that despite my fear and pain there is a cushion of peace. I believe You planned this before she was born. I believe You will touch many lives through my little girl. Writing this is the first time I have allowed myself to cry. Its going to be hard, but that's when You shine.
Dr. Bonney and Dr. Brennan have called me many times just to update and check on her. They have given me cell phone numbers and told me to call them anytime for any reason. Dr. Brennan even met me this past Sunday morning before church to give us more blood pressure meds. They have been unbelievably concerned and attentive to her. I cant say how grateful I am for that. Dr. Brennan called again today to ask how her appointment went. I told him and mentioned that I was nervous about it being 4 weeks out and then setting a surgery date and then a 3-4 week healing time was going to cut it very close to my c-section date. He seemed concerned about that also and said he was going to call Dr. Freedman and explain our situation and hopefuly get a sooner appointment. So now we wait. And pray. And trust.
last Friday at Dr. Brennan's office
this Tuesday at Duke
About 2 weeks ago Presley started having some strange symptoms. It started on a Thursday night with an episode of diarrhea and then seemed to feel better. That Friday I worked and when I got home Lucas said Presley had been very emotional all day and had refused to eat. That Saturday we were heading to the Lake and Presley would not eat breakfast so we stopped at McDonalds and got breakfast, while Lucas was pumping gas I looked back and saw Presley pouring tears and again asked her a million questions about why she was so sad. She said she didn't know she just wanted to go home. And of course didn't eat her McDonalds. Lucas told her she would be fine once she go to the Lake and started having fun. She seemed pretty normal and did end up having fun that day. Then before leaving she didn't want strombolis like everyone else and asked for some left over hot cakes. We heated those up and she took one bite and started crying and said her food kept feeling stuck in her throat and said she couldn't eat. Sunday morning, same thing she was sitting at her bowl of cereal twirling her spoon in it and quietly pouring tears. On the way to church she started crying and told me her belly was growling and she was hungry so we stopped at Biscuitville and got her a biscuit, she took one bite and said it was not good, so went across the street and got her a Happy Meal, couldn't eat it. In between this time there had been random complaints like, my belly hurts, I feel like I cant pee but I need to, I feel sad but I don't know why, and of course the crying. And by crying I mean finding her pouring tears with a blank sad face, not the screaming for attention type of crying.
So this is not my daughter. She is happy and independent and spunky and not a "cryer" or a drama queen (like her sister). By Tuesday the nurse in me was trying hard to put these symptoms together. There was no fever, her urine seemed OK, she had no belly tenderness, the complaints were so random. Now she was starting to say her left eye hurt. I assumed her eye probably hurt because of the consistent crying. I called her Pediatrician and they worked her in. I just wanted to check her urine and her sugar and rule out appendicitis and thought that would possibly give some answers or at least make me feel better and just chalk this up to a weird phase that will soon pass. Her doctor took one look at her eye and I could see panic in his face. He asked how long her eye had looked that way. I explained that 3 months ago her pupil blew and we took her to her pediatric eye doctor. He looked in her eye and said nothing looked more abnormal than before (this is her "broke eye" that has a destroyed retina in it already) and told us he just wanted to keep an eye on it and would see us again in 3 months. A few days later I called and told him the eye was red but had no discharge like typical pink eye would; he asked if she was having pain and the answer was no, so again told us to follow up later. Still never did any testing.
So back to Tuesday... Her Pediatrician, Dr. Bonney sent us to Alamance Eye to have her eye pressure checked. There we met Dr. Brennan. Her eye pressure was 46. It should be between 10-20. So we have a diagnosis; neovascular glaucoma. Turns out glaucoma can cause these other strange symptoms. Very rare in children. The vessels that twisted and destroyed Presley's retina have continued to twist around and now there is one on the surface of her eye that is blocking her tear system and thus causing the build up of pressure. She started taking 2 eye drops and a blood pressure medicine. By the next day when we followed up her pressure was down to 17. Dr. Brennan was pleased and backed us off of the bp medicine and just continued the drops. On Friday, again I was at work and Lucas called and said her eye was very red again and she was holding it in pain. So I left and we went back to the eye doctor. Started back on the bp medicine and again she feels much better.
3 months ago when I got no answers about her blown pupil I called Duke, and begged for an appointment with the retina specialist who put Presley to sleep when she was 3 to do the ultrasound to rule out cancer, which revealed the vessel problem. They finally agreed to see us but the soonest appointment was months away and turned out to be set for this Tuesday.
This Tuesday we went to Duke and because Presley's case is rare, I completely understand interns wanting to see her and assess her. But of course this means a child has to endure multiple exams before ever seeing the "real doctor". She was in a good mood and tolerated this much better than she did when she was 3. Dr. Toth decided she needs to see a doctor named Dr. Freedman who is a "world renowned pediatric glaucoma surgeon". She also works at Duke and we are scheduled to see her in 4 weeks. After speaking with Dr. Freedman, Dr. Toth explained that if we only had the glaucoma to deal with there would be more options but because Presley's retina problem and no vision in that eye, our options are limited because often treating one eye can affect the vision in the other eye. Her good eye could become "a sympathetic eye", and she cant afford to lose vision in both eyes obviously. They feel like the meds will only be a temporary fix and our only reasonable option is enucleation of the eye. In lay mans terms, the removal of her eye globe and a prosthetic eye in its place. The muscles would remain intact and it would function like a normal eye but without vision.
Wow. Really God? I choose to believe You when You say Your ways are not our ways, I choose to believe You have a plan and a greater purpose. Thankful that despite my fear and pain there is a cushion of peace. I believe You planned this before she was born. I believe You will touch many lives through my little girl. Writing this is the first time I have allowed myself to cry. Its going to be hard, but that's when You shine.
Dr. Bonney and Dr. Brennan have called me many times just to update and check on her. They have given me cell phone numbers and told me to call them anytime for any reason. Dr. Brennan even met me this past Sunday morning before church to give us more blood pressure meds. They have been unbelievably concerned and attentive to her. I cant say how grateful I am for that. Dr. Brennan called again today to ask how her appointment went. I told him and mentioned that I was nervous about it being 4 weeks out and then setting a surgery date and then a 3-4 week healing time was going to cut it very close to my c-section date. He seemed concerned about that also and said he was going to call Dr. Freedman and explain our situation and hopefuly get a sooner appointment. So now we wait. And pray. And trust.
this Tuesday at Duke
Friday, June 1, 2012
Eric Church - Springsteen
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