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| splint up to his waist for fractured knee |
Friday, October 21, 2011
Regression/broken
Well, you will never guess what. Edward has a hairline fracture in his knee. He was super-duper crabby yesterday and whenever I picked him up or moved him, he screamed. When I taped his feet, I knew something was wrong. Then I noticed that he wouldn't move his leg. And...I think I remember what happened...Harvey threw the controllers or a toy, I can't remember which one, and it hit Edward. Unreal. If it's not one thing, it's the other. Dear Lord, help me help Edward.
Month one, broken arm. Month six, broken knee. Month ten?...hip and feet surgery. Oh joy. Poor baby. I will remember, "in all things give thanks." The devil will not defeat us and we will count our blessings. No biggie...we got this...what is a fractured knee, anyway!?
Tuesday, October 18, 2011
I am much better now. Life gets overwhelming, at times, but nothing worth having is easy. Jesus loves me and won't give me more then I can handle. Even though, many times last week I told God enough!
The book I am reading is pretty good. It makes me realize how important prayer is and how it can make a difference. I was going through a stage, weeks back, about not knowing the purpose of prayer. My rationale was, since God is omnipotent then what is the point? My prayers don't matter. For example, I prayed and prayed and prayed when I was pregnant with Edward and God didn't change the outcome. God has His will and knows what is best for us, right? So, no matter how hard I prayed, He still did what He wanted. I don't know. Prayer is confusing. So many pastors tell you how to pray. Is there a specific way to pray that I am not getting? But, also, in the Bible it says that sometimes we don't know how to pray and that the Holy Spirit will intervene for us and ask what we cannot. "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans." Romans 8:26 This is a verse that helped me when pregnant. This is why I prayed and prayed. "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" Philippians 4:6-7. Don't get me wrong here. I believe in prayer. It says in the Bible that prayers are powerful and effective and that God hears all prayers. "And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it" John 14:13-14. I believe that the words in the Bible are true. I guess my thing was, if God's will be done and He knows what is best for us, then why should I ask for the things that I think I want?
P.s. Happy SIX months to my sweet Edward! (seems like years ago..)
| oh boy |
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| sweetest thing |
| sweet boys |
P.s. Happy SIX months to my sweet Edward! (seems like years ago..)
Wednesday, October 12, 2011
Falling fast
I am the mom I never wanted to be. I have the child I never wanted to have. I just got home from a long morning. It started with an eight a.m. pt appointment for Edward and ended at Barnes and Noble, searching for the Strong Willed Child by Dr. James Dobson. Laugh it up. I just feel like I am losing control of my son/life. He is 25 months and he is in the stage where he likes to run away from me while laughing. He thinks he is soooo freaking funny. I find myself chasing him, half laughing myself, in disbelief/embarrassment that I am chasing my freaking 2 year old. Yuck. Everybody tells me that it is just 'his age.' No it is not. I suck. I need my mom to show me how it is done. Be with us the whole day and tell me what to do and how to do it. I always thought I would be a good mom. Seriously, I need to high-five my mom and my grandma! Harvey is seriously awesome an hour before bed and during his nap-time. It is hard.
We have pt three times this week and next week. I think that the whole Edward situation sits in the back of my mind and weighs me down. Whenever I start to feel sad or feel sorry for myself, I immediately push it away. I mean, Edward is awesome and I am so blessed. But it sucks. It really does. I mean, in the grand scheme of things is really doesn't, but. There is just so much. I now have to tape his feet every day. So instead of him being cast every friday, he is in braces and his little feet don't stay in them very well. I have to tape them so they will stay in a good flexed position. I am pretty much 'casting' him everyday. Bla. Yet one more thing to add. I seriously wish he didn't have scoliosis either. I just feel sooooooooo bad for the little guy. Yeah I secretly love that he is sooo small, selfishly, but I really don't like it. It is not right. He should be crawling and moving and eating like any 6 month old. He should weigh 15 lbs instead of 9.
Am I getting what I deserve? I am at the very end of my rope here. I don't even know how to pray in this situation. "In all things give thanks," "all things work together for good to those who love God," "I can do do all things through Christ who strengthens me." Yes, yes, I know. I know, I know. But what am I missing? I can't even go to church without bawling the second the music starts to play. What does it all mean? hahahaha, I sound ridiculous. Time for me to find my 'happy place.' Off to sew.
We have pt three times this week and next week. I think that the whole Edward situation sits in the back of my mind and weighs me down. Whenever I start to feel sad or feel sorry for myself, I immediately push it away. I mean, Edward is awesome and I am so blessed. But it sucks. It really does. I mean, in the grand scheme of things is really doesn't, but. There is just so much. I now have to tape his feet every day. So instead of him being cast every friday, he is in braces and his little feet don't stay in them very well. I have to tape them so they will stay in a good flexed position. I am pretty much 'casting' him everyday. Bla. Yet one more thing to add. I seriously wish he didn't have scoliosis either. I just feel sooooooooo bad for the little guy. Yeah I secretly love that he is sooo small, selfishly, but I really don't like it. It is not right. He should be crawling and moving and eating like any 6 month old. He should weigh 15 lbs instead of 9.
Am I getting what I deserve? I am at the very end of my rope here. I don't even know how to pray in this situation. "In all things give thanks," "all things work together for good to those who love God," "I can do do all things through Christ who strengthens me." Yes, yes, I know. I know, I know. But what am I missing? I can't even go to church without bawling the second the music starts to play. What does it all mean? hahahaha, I sound ridiculous. Time for me to find my 'happy place.' Off to sew.
Monday, October 10, 2011
Good
Yay for my sweet Edward! He is out of casts for awhile! This morning they put splints on him! Poor guy was soo tired and mad that they were messing with his feet like that. Then he had three shots. Poor baby. I am so excited! I get to put pants on him! I love it! (That was last Friday.) Here is a video of Edward's sweet ability! It is short, sorry.
http://vimeo.com/29861975
With the new found freedom from casts, I have decided to move Edward along. Treat him like the soon-to-be six month old he is. So, we have started him on some rice cereal. I have been putting him in his little bouncy chair so he can work on his head control and trunk control. Even though he is still in newborn clothes, which I secretly love, I need to start treating him like a six month old. Freak, I love him. He is just a rock star.
I want to show off my quilt. I just finished it and am sooo happy with it! Well, that's all for now.
http://vimeo.com/29861975
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| look at that face |
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| sweet smile, evidence of him eating some food! |
| drool monster |
I want to show off my quilt. I just finished it and am sooo happy with it! Well, that's all for now.
| Edward's quilt |
Thursday, September 29, 2011
Update!
Stress mania. Seriously. The weekend before Edward's surgery, my husband was gone for three nights. Figure no sleep. He comes back Monday night and the boys and I take off Tuesday morning. I met my sweet friend at Ikea. Wait, driving to Seattle with a potty trained boy is, well, exhausting. I had to stop on the side of the road because he yelled, "Pee!!! Momma, pee!!!" Freak. Of course. Trip took a good 5 hours. Back to my sweet friend. She took Harvey for two nights, three days. Jen, thank you sooo very much! The next day was surgery day. I felt very emotional the day of. No sleep and stress will do that. It was just me and Edward. We do all the mumbo-jumbo pre-surgery stuff and they finally took him around 3. I was paged for updates and they told me that nothing is straight forward with Edward and that they will only be able to do his right side hernia and testes drop, because of anesthesia problems. (They were supposed to do his left and right side hernia, testes, and circumcision.) They also had to go through his belly button with a camera to find some stuff tangled in his hernia. I was all alone in the hospital crying. Not cool.
Finally, around eight or nine, I was able to see my baby. I was soo happy and soo enraged all at the same time. You guys should have seen my poor baby. He was poked no less then 15 times. He had bruises all up and down his arms and hands. I was infuriated! I thought I had learned my lesson from Shriner's but I guess not. I told them were they could place the iv. They tried there and many other places. My heart was broken for him. At least he is ok. There are a bag of issues that goes into anesthesia for Edward and I understand, but seeing all those pokes hurt me. After I vented to anesthesia for like 10 minutes, I was in happy bliss just holding him and feeding him. Edward and I stayed the night in the hospital. I have to tell you about the dream I had that night. It was terrible.
This was my dream...When I finally got to see Edward after surgery, the nurses were huddled around him. He was having trouble breathing and he was turning red from lack of oxygen. I start freaking out because I felt like they weren't working fast enough to help him. One nurse had pushed the ambulance button but I ran outside our room to scream for help. I tried screaming with all my might but nothing was coming out. I kept trying and trying to scream for help. No sound was coming out of my mouth. Freak. I hate those dreams. I felt helpless and I woke up thinking/wondering if my dream was real. Bla. Terrible. Thank the Lord that didn't actually happen!
In other news, Edward is so cute. He is so smart. He is reaching for his bottle and can hold his bottle and he tries to put it back in his mouth when it goes out. And in pt he is showing signs of rolling! Everybody loves him. But I love him most. And he loves me most! Yaaahahhaahahha!
The other night we watched Soul Surfer. Good movie. Bad acting but good. I cried. You should watch it, and think of Edward.
Thank you all for your prayers!
Finally, around eight or nine, I was able to see my baby. I was soo happy and soo enraged all at the same time. You guys should have seen my poor baby. He was poked no less then 15 times. He had bruises all up and down his arms and hands. I was infuriated! I thought I had learned my lesson from Shriner's but I guess not. I told them were they could place the iv. They tried there and many other places. My heart was broken for him. At least he is ok. There are a bag of issues that goes into anesthesia for Edward and I understand, but seeing all those pokes hurt me. After I vented to anesthesia for like 10 minutes, I was in happy bliss just holding him and feeding him. Edward and I stayed the night in the hospital. I have to tell you about the dream I had that night. It was terrible.
This was my dream...When I finally got to see Edward after surgery, the nurses were huddled around him. He was having trouble breathing and he was turning red from lack of oxygen. I start freaking out because I felt like they weren't working fast enough to help him. One nurse had pushed the ambulance button but I ran outside our room to scream for help. I tried screaming with all my might but nothing was coming out. I kept trying and trying to scream for help. No sound was coming out of my mouth. Freak. I hate those dreams. I felt helpless and I woke up thinking/wondering if my dream was real. Bla. Terrible. Thank the Lord that didn't actually happen!
| 6 pokes one hand..he is totally out of it |
The other night we watched Soul Surfer. Good movie. Bad acting but good. I cried. You should watch it, and think of Edward.
Thank you all for your prayers!
| holding his bottle 5 months |
Tuesday, September 20, 2011
More surgery
I need to blog more often so I don't have to work my memory. More crazy weeks to tell you about.
Well, as you know, Edward's last tendon release surgery went well. We had that done at Shriner's and the doc was able to get a good stretch of his right foot. It has almost caught up to his left. However, we had gone up with Edward to meet anesthesiologist in the prep room and I specifically told them where they could easily put an iv in. They didn't listen and Edward had pretty good bruises on the inside of both his elbows. They eventually placed it where I had told them. I was furious. It made me realize that I cannot trust anybody with my baby. It made me glad that God made me opinionated, loud, and a bit controlling. I have to be for Edward's sake.
The next day, Edward would not eat or sleep. He cried in pain. I noticed that his hernia had gotten bigger so I took him to the ER. Waste of my time. They didn't do anything. So I called Seattle Children's and they decided that we should move his surgery date up. So surgery is this Wednesday the 21st. They will be fixing his hernia, dropping his testes, and giving him a circumcision. This will be his first major surgery, so please pray he can recover easily and not have any post-op pain.
Wanna hear a funny story? Last March, before I had Edward, after one of my many ultrasounds, a social worker came in to talk to me. She gave me a birth plan and told me to think about my answers and fill it out. 'Yeah, Yeah,' I thought to myself. 'I have seen these before,' so I stuck it in my bag. That weekend, Adam was on spring-break so we decided to drive down to Portland. On the way, I decided look through the birth plan. I started bawling. I didn't realize the doctors wanted answers to questions like: "How long do you want to be with your baby while he/she is dying or has died," "What kind of after-death care would you like," Would you like us to resuscitate your baby," "What kind of breathing assistance and/or ventilation would you like your baby to have." I was devastated. It was supposed to be natural vs. medicine, caesarean vs. vaginal, family vs. no family in the room. (I tell this story for my memory's sake.) I truly forget, towards the final days of my pregnancy, how dire the situation was. The doctors really did tell me that they didn't think Edward would make it. I do have a miracle baby. I seriously can't believe I endured all that.
Last week was birthday week. Harv's one day, the next, mine. Crazy, busy, fun times.
So, the other day I went to a Mom's group at my church and they wanted to introduce new babies. I introduce Edward as 'my miracle baby' and they wanted an explanation. So I give my short, modified, quick version and in doing so, I am holding Edward up so he is looking at me. The WHOLE entire time I told my story he just stared at me and then smiled at some parts of the story. It was the most precious thing. I could have died in that moment and all the mom's melted.
I need your suggestions. I struggle with how to handle peoples obnoxious stares. I was at a park the other day and a lady and her friend were clear across the park. I noticed her looking straight at Edward and she nudged her friend to look and she literally strained her body to get a glance. I watched the whole thing go down. Then they gave me the 'pout face,' you know the one where you droop your bottom lip, and I wanted to punch them. (It seems like I want to punch a lot, huh?) I know they meant no harm but come on! I got angry. But I need a better way of handling that kind of situation, aside from wanting to punch everybody because they don't understand how fortunate I am. I need a verse or a thought or a song....
Well, as you know, Edward's last tendon release surgery went well. We had that done at Shriner's and the doc was able to get a good stretch of his right foot. It has almost caught up to his left. However, we had gone up with Edward to meet anesthesiologist in the prep room and I specifically told them where they could easily put an iv in. They didn't listen and Edward had pretty good bruises on the inside of both his elbows. They eventually placed it where I had told them. I was furious. It made me realize that I cannot trust anybody with my baby. It made me glad that God made me opinionated, loud, and a bit controlling. I have to be for Edward's sake.
The next day, Edward would not eat or sleep. He cried in pain. I noticed that his hernia had gotten bigger so I took him to the ER. Waste of my time. They didn't do anything. So I called Seattle Children's and they decided that we should move his surgery date up. So surgery is this Wednesday the 21st. They will be fixing his hernia, dropping his testes, and giving him a circumcision. This will be his first major surgery, so please pray he can recover easily and not have any post-op pain.
Wanna hear a funny story? Last March, before I had Edward, after one of my many ultrasounds, a social worker came in to talk to me. She gave me a birth plan and told me to think about my answers and fill it out. 'Yeah, Yeah,' I thought to myself. 'I have seen these before,' so I stuck it in my bag. That weekend, Adam was on spring-break so we decided to drive down to Portland. On the way, I decided look through the birth plan. I started bawling. I didn't realize the doctors wanted answers to questions like: "How long do you want to be with your baby while he/she is dying or has died," "What kind of after-death care would you like," Would you like us to resuscitate your baby," "What kind of breathing assistance and/or ventilation would you like your baby to have." I was devastated. It was supposed to be natural vs. medicine, caesarean vs. vaginal, family vs. no family in the room. (I tell this story for my memory's sake.) I truly forget, towards the final days of my pregnancy, how dire the situation was. The doctors really did tell me that they didn't think Edward would make it. I do have a miracle baby. I seriously can't believe I endured all that.
Last week was birthday week. Harv's one day, the next, mine. Crazy, busy, fun times.
So, the other day I went to a Mom's group at my church and they wanted to introduce new babies. I introduce Edward as 'my miracle baby' and they wanted an explanation. So I give my short, modified, quick version and in doing so, I am holding Edward up so he is looking at me. The WHOLE entire time I told my story he just stared at me and then smiled at some parts of the story. It was the most precious thing. I could have died in that moment and all the mom's melted.
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| i could eat him up! |
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| me and sweetness |
| birthday boy |
| ahhhhh dorable! |
Tuesday, September 6, 2011
Sappy Love
I am sitting at Shriner's right now waiting for Edward to go into surgery. Today he is having another tendon release done. Lot's has happened the past couple weeks.
I lost Edward's hand splints a couple weeks ago. They literally vanished. Mainly my fault for not being a better mom and putting them on him every single night, like I should. So, after a phone call to my mom, a fire was lit under me to be better. It is hard though. My day starts moving fast, and with potty training my other boy, before I know it, the day is gone.
Then, this is terrible, but I was playing with Edward on a pillow and Harvey had just woken up from his nap. I left Edward on his pillow and went up stairs to make Harv some lunch. I came back down and Edward had rolled off his pillow and gone face first onto the couch. I freaked. His eyes were closed and his breathing was slow. I ran upstairs and opened the freezer door to maybe have the cold air stimulate him. He opened his eyes and slowly returned to normal. Ugh...that was terrible. He is fine, thankfully. But you can imagine. I just didn't think he could go anywhere from his pillow because he generally can't. I was horrified and it took me a long while to calm down from that. Nightmares.
This last Wednesday we went back to Seattle for the Arthrogryposis clinic. It went sooo well! My husband and I felt soo encouraged afterwards! We had like eight appointments for him including one with Dr. Hall. Yes, we got to meet the famous Dr. Judith Hall! She was awesome! She loves arthrogryposis kids and what she does! The biggest thing I got from her was to enjoy Edward as much as possible now, then after this year I can study-up to become a muscle expert. She was super sweet. She also said that we should do whatever Dr. Song says in regards to Edward's feet and hips because he is the best. Done. He will have hip surgery and feet surgery at the same time come Jan/Feb. We feel really good about it. It just felt sooooooooooooo good to be back at Children's! We saw Edward's old physical therapist and she was so sweet and she missed Edward! OOhhh..I miss Children's. It was just a good day! We were not as affected by the 'look' of arthrogryposis as we were the first time. I was, yet again, reassured that this is, in all actuality, no big deal. I am sooo lucky to be Edward's mom. Here comes the sappy...
Seriously. I was telling Adam all this. I feel sooo unbelievably privileged to be Edward's mom! Instead of why me in a feel sorry for myself kinda way, I have been asking Jesus why me in a humbled, elated way! Of all the things that could happen to a baby/pregnancy, I lucked out. Edward is such an awesome, awesome little boy! This is the thing, I feel God's love through Edward. It is the honest truth. I know this is all sappy crap but man, Edward was no accident. (That is what my Christian minded physical therapist said! I'm so happy with him!) God specifically gave me Edward and I don't know why me but I can tell you that I feel sooo honored that he did! I would go through all the pain 10 times over just to have him and feel Jesus' grace through him. Not kidding, mark my words, Edward is going to play the piano and have an insatiable love for Jesus! When I look at Edward, I feel like I can see the boy he will become. Man, I love him!!! I am the luckiest and all you guys aren't! haha...humbled, right?! But I literally have a gift from God.
Edward has been starting to reach for toys lately. I love this age. He just wants all my attention and he loves people talking to him. He cracks up at the silliest of noises. What a love butt.
P.S. My baby is only 9 pounds 6 ounces today. Also, Edward did great today! His tight foot came right up! Praise the Lord!
| major love butt! |
| couldn't you just die?! |
Then, this is terrible, but I was playing with Edward on a pillow and Harvey had just woken up from his nap. I left Edward on his pillow and went up stairs to make Harv some lunch. I came back down and Edward had rolled off his pillow and gone face first onto the couch. I freaked. His eyes were closed and his breathing was slow. I ran upstairs and opened the freezer door to maybe have the cold air stimulate him. He opened his eyes and slowly returned to normal. Ugh...that was terrible. He is fine, thankfully. But you can imagine. I just didn't think he could go anywhere from his pillow because he generally can't. I was horrified and it took me a long while to calm down from that. Nightmares.
This last Wednesday we went back to Seattle for the Arthrogryposis clinic. It went sooo well! My husband and I felt soo encouraged afterwards! We had like eight appointments for him including one with Dr. Hall. Yes, we got to meet the famous Dr. Judith Hall! She was awesome! She loves arthrogryposis kids and what she does! The biggest thing I got from her was to enjoy Edward as much as possible now, then after this year I can study-up to become a muscle expert. She was super sweet. She also said that we should do whatever Dr. Song says in regards to Edward's feet and hips because he is the best. Done. He will have hip surgery and feet surgery at the same time come Jan/Feb. We feel really good about it. It just felt sooooooooooooo good to be back at Children's! We saw Edward's old physical therapist and she was so sweet and she missed Edward! OOhhh..I miss Children's. It was just a good day! We were not as affected by the 'look' of arthrogryposis as we were the first time. I was, yet again, reassured that this is, in all actuality, no big deal. I am sooo lucky to be Edward's mom. Here comes the sappy...
Seriously. I was telling Adam all this. I feel sooo unbelievably privileged to be Edward's mom! Instead of why me in a feel sorry for myself kinda way, I have been asking Jesus why me in a humbled, elated way! Of all the things that could happen to a baby/pregnancy, I lucked out. Edward is such an awesome, awesome little boy! This is the thing, I feel God's love through Edward. It is the honest truth. I know this is all sappy crap but man, Edward was no accident. (That is what my Christian minded physical therapist said! I'm so happy with him!) God specifically gave me Edward and I don't know why me but I can tell you that I feel sooo honored that he did! I would go through all the pain 10 times over just to have him and feel Jesus' grace through him. Not kidding, mark my words, Edward is going to play the piano and have an insatiable love for Jesus! When I look at Edward, I feel like I can see the boy he will become. Man, I love him!!! I am the luckiest and all you guys aren't! haha...humbled, right?! But I literally have a gift from God.
| ah! my sweet love face! |
| freakin adorable |
| out of it...on some meds |
| sleepy after surgery |
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