Happy Birthday to my Sweet Boy!
Sunday, April 15, 2012
Friday, April 6, 2012
Subdue the emotion of it all
We had a neurology appointment on Monday to explain Edward's soft spot in his brain. He said it was most likely there since birth and could possibly effect his motor developement in his right side. He said it could have happened during the third trimester from me and my blood. That sucked to hear.
After his appointments I went to some thrift stores and I found the most amazing pair of boots for $1.29!! Yup, it was my lucky day! My size and everything!!! I was on a mad high from that amazing score. Then my brother and his wife threw the BEST surprise birthday party for Edward! It was the sweetest thing in the world! I adored it! Thank you guys!
Monday night was tough because I had to follow Edwards surgery feeding schedule. I was up with him at 1:30 am, 3:30, and 5:30 making sure he was full...then we checked in at 6:15. I was strangely calm the whole day! It was weird. Could have been because I was still so thrilled about my boot find...haha. Edward is such an awesome kid. Surgery was faster then expected. Our doctor is a rock star! I was soooooooo excited to see Edward! Our doc said that he was "über" pleased with how Edward's feet turned out and said that the talectomy was nessecary. He said that there was no fluid around the joint and that his tendons and ligaments that were stuck to his bone were like glue. (which is why there was no movement...that is just so crazy to me.) The bad news is that his hip joint is pretty much the same. They formed a sudo-like joint up by the top of his pelvis. He said the joint is like cartilage which is why, again, there is hardly any movement. So he doesn't think reducing his hips will be an option. Instead, he thinks it might be best if we break his femur bones and put them into a better position for hygeine reasons. So he would break the bone and put pins in. Suckage!! I just pray he will walk and sit at a 90 degree angle. And we only got like three degrees from clipping his abductor muscles. Boo.
I felt super humbled by the support that we got from family and friends. I literally have the best family and friends anyone could ask for! Even acquaintances texted me with prayers and support. And the prayers that I am not aware of, thank you! I know that through all the prayers I was able to handle everything and that Edward was in the Lord's hands. This is the thing, I don't want to think about it all. I don't want to get emotional. I know that if I let myself go and really feel everything, I would loose it. I have experienced that once before (a year ago) and don't ever want to experience it again. I have to keep everything at bay. Edward's birthday is coming and I don't want to be emotional. I just want to be in the now and not look back at what happened a year ago. I am beyond thankful for my life and my boys and I want to focus on that. Dwelling one the past is not healthy, right? Pictures are bad. This year has been one heck of a freaking year but we made it and we are all better for it! Edward is God's gift to me and my family, for His glory, and I would do it alllll over in a heartbeat! And I would take 10 more FSS babies. I need to focus on the now and Edward's spine and the many more surgeries that are coming in the very near future.
So, with that said, all your prayers and concern for Edward have meant the world to me! God's love is good! Psalm 30:12 "To the end that my glory may sing praise to thee, and not be silent. O Lord my God, I will give thanks unto thee forever." What an awesome verse of joy, gratitude, and thankfulness. I love it.
After his appointments I went to some thrift stores and I found the most amazing pair of boots for $1.29!! Yup, it was my lucky day! My size and everything!!! I was on a mad high from that amazing score. Then my brother and his wife threw the BEST surprise birthday party for Edward! It was the sweetest thing in the world! I adored it! Thank you guys!
Monday night was tough because I had to follow Edwards surgery feeding schedule. I was up with him at 1:30 am, 3:30, and 5:30 making sure he was full...then we checked in at 6:15. I was strangely calm the whole day! It was weird. Could have been because I was still so thrilled about my boot find...haha. Edward is such an awesome kid. Surgery was faster then expected. Our doctor is a rock star! I was soooooooo excited to see Edward! Our doc said that he was "über" pleased with how Edward's feet turned out and said that the talectomy was nessecary. He said that there was no fluid around the joint and that his tendons and ligaments that were stuck to his bone were like glue. (which is why there was no movement...that is just so crazy to me.) The bad news is that his hip joint is pretty much the same. They formed a sudo-like joint up by the top of his pelvis. He said the joint is like cartilage which is why, again, there is hardly any movement. So he doesn't think reducing his hips will be an option. Instead, he thinks it might be best if we break his femur bones and put them into a better position for hygeine reasons. So he would break the bone and put pins in. Suckage!! I just pray he will walk and sit at a 90 degree angle. And we only got like three degrees from clipping his abductor muscles. Boo.
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| at home sleeping |
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| my amazing $1.29 boots |
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| look at those feet! |
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| having a reaction to some meds |
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| right before he was taken back |
So, with that said, all your prayers and concern for Edward have meant the world to me! God's love is good! Psalm 30:12 "To the end that my glory may sing praise to thee, and not be silent. O Lord my God, I will give thanks unto thee forever." What an awesome verse of joy, gratitude, and thankfulness. I love it.
Friday, March 30, 2012
Surgery is coming...soon
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| sleeping |
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| cutest face ever! |
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| love edjy's face |
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| big bro needs to be center of attention |
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| new haircut |
As surgery creeps closer, I am starting to get really nervous about it. Aaahhhh!! This is a big surgery and he will be under for probably five hours. That in itself is scary and the fact that we are removing a bone from his foot is very unsettling. I have done my homework on this surgery and I feel confident in our doctors ability. There is no right or wrong decision so I have to pray that this will have a good outcome for Edward. Ahhhh! I hate this feeling! I have had a lot of outside opinions and that is very hard to deal with. I just have to put my trust in the Lord that He will work it out! Ahhh! Please pray for Edward! I have been house bound for the past two weeks and we are going a little crazy. A lot crazy really. April 3rd is the day.
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| hand braces |
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| omg the sweetest |
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| poor babes spine |
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| my boys running outside...edward loves it |
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| roaming Target making a mess |
Monday, February 27, 2012
lovely
Here is a quick list of the current happenings:
-spine is getting worse by about 7 degrees in past four months
-surgery has been delayed for six weeks due to his RSV and double ear infection he had three weeks ago and another more recent cold on top of it
-Edward had his first tooth that surfaced yesterday
-he is ten months old
-he weighs 9.9lbs
-he cries/whines whenever he sees me so he can get what he wants
Yup. What do you do? I wish his surgery wasn't so far out. I feel like life can begin after this surgery. In my mind (fictional thinking) I feel like Edward will magically become a "normal" ten month old. Not true. It will always be the next surgery, the next brace, the next cast, the next "thing." Such is our wonderfully blessed life.:)
So I have to tell you about my little struggle that I recently went through. A couple weeks ago I went to a moms group at church and the speaker spoke about depression. (haha I just remembered that I had walked into the church that day with TWO different shoes on!!!! I couldn't believe it! That should have been everybodys first clue that something was off! But they just laughed at me.) I had been emotionally struggling for awhile but I held it together while listening to the speaker. The thing that hit me was when she spoke about her pride and thinking she was mentally strong enough to fight the battle herself. Ok. So whatever, I went home and went on with life. The next week, last week, we had to go to Seattle for preop appointments. At the same time my friend was having her baby, and side note, I know about eight or nine friends who are pregnant around me. The day we traveled to Seattle was probably my lowest day. Adam was seriously worried about me. I had gotten myself into such a pity party that I couldn't see the light. I have this problem of comparing my life to others and I couldn't see the blessings in front of me. It just seemed like everybody else was getting their 'fairytale' life. Here I am traveling across state to deal with one of many surgery appointments for my baby boy. What parent wants that? And it could be soo much worse and I know that, but I couldn't accept that, my situation was the worst in the frame of mind I was in. I didn't really talk the whole trip as I was battling in my mind with no avail. Then I remembered that I couldn't get myself out of my mind myself. Words from the depression talk come back to me. I started to pray hard. I realized the devil was attacking me and I asked Jesus to fight the battle for me, I couldn't do it myself. And He did! I kinda snapped out of it. I think as Christians we have to be mindful that the enemy is actively trying to bring us down and that we desperately need the Lord to help us fight the battle. Romans 12:2 "Do not conform any longer to the pattern of this world, but be transformed by the renewing or your mind. Then you will be able to test and approve what God's will is-his good, pleasing, and perfect will."
So, I am doing well. I have to do my do diligence and keep my eyes fixed on the important things. Enjoy the present and read my Bible everyday. Edward is God's perfect will and I get to be his mom. I love my life.
-spine is getting worse by about 7 degrees in past four months
-surgery has been delayed for six weeks due to his RSV and double ear infection he had three weeks ago and another more recent cold on top of it
-Edward had his first tooth that surfaced yesterday
-he is ten months old
-he weighs 9.9lbs
-he cries/whines whenever he sees me so he can get what he wants
Yup. What do you do? I wish his surgery wasn't so far out. I feel like life can begin after this surgery. In my mind (fictional thinking) I feel like Edward will magically become a "normal" ten month old. Not true. It will always be the next surgery, the next brace, the next cast, the next "thing." Such is our wonderfully blessed life.:)
So I have to tell you about my little struggle that I recently went through. A couple weeks ago I went to a moms group at church and the speaker spoke about depression. (haha I just remembered that I had walked into the church that day with TWO different shoes on!!!! I couldn't believe it! That should have been everybodys first clue that something was off! But they just laughed at me.) I had been emotionally struggling for awhile but I held it together while listening to the speaker. The thing that hit me was when she spoke about her pride and thinking she was mentally strong enough to fight the battle herself. Ok. So whatever, I went home and went on with life. The next week, last week, we had to go to Seattle for preop appointments. At the same time my friend was having her baby, and side note, I know about eight or nine friends who are pregnant around me. The day we traveled to Seattle was probably my lowest day. Adam was seriously worried about me. I had gotten myself into such a pity party that I couldn't see the light. I have this problem of comparing my life to others and I couldn't see the blessings in front of me. It just seemed like everybody else was getting their 'fairytale' life. Here I am traveling across state to deal with one of many surgery appointments for my baby boy. What parent wants that? And it could be soo much worse and I know that, but I couldn't accept that, my situation was the worst in the frame of mind I was in. I didn't really talk the whole trip as I was battling in my mind with no avail. Then I remembered that I couldn't get myself out of my mind myself. Words from the depression talk come back to me. I started to pray hard. I realized the devil was attacking me and I asked Jesus to fight the battle for me, I couldn't do it myself. And He did! I kinda snapped out of it. I think as Christians we have to be mindful that the enemy is actively trying to bring us down and that we desperately need the Lord to help us fight the battle. Romans 12:2 "Do not conform any longer to the pattern of this world, but be transformed by the renewing or your mind. Then you will be able to test and approve what God's will is-his good, pleasing, and perfect will."
So, I am doing well. I have to do my do diligence and keep my eyes fixed on the important things. Enjoy the present and read my Bible everyday. Edward is God's perfect will and I get to be his mom. I love my life.
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| funny big brother |
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| sweetness |
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| he loves his finger! (all my awesome pics are on instagram but can't figure out how to get them on here yet) |
Thursday, February 9, 2012
Bros be bros
Last Friday went well. Edward and I got up super early and drove five hours and rolled into our appointment. They took xrays and Dr. Mosca told us that Edward needs to have a pretty rare surgery called a talectomy...they remove his talus bone. Then we drove home. Sweet long hours in the car.
Surgery, as of now, is scheduled for March 1st. This will be a pretty involved surgery, his biggest yet.
I took this video of my boys....you need to watch it to the end. Pretty typical of brothers/siblings or youngest to oldest behavior. It gave me validation with my siblings. hahaha
http://vimeo.com/36496621
Surgery, as of now, is scheduled for March 1st. This will be a pretty involved surgery, his biggest yet.
I took this video of my boys....you need to watch it to the end. Pretty typical of brothers/siblings or youngest to oldest behavior. It gave me validation with my siblings. hahaha
http://vimeo.com/36496621
Friday, January 27, 2012
Hurting hearts
This world we live in is so full of pain. This has been a tough week full of heartbreaking news. Sweet baby Kimber, who has Freeman Sheldon Syndrome, has cancer. Rhabdomyosarcoma it is called. There is an 85% success rate, which is good. She has to have six months of chemotherapy. And I got to meet her! Let me tell you, I loved her the INSTANT I laid eyes on her! She is just precious and looks exactly like Edward! Seriously, she is one tough cookie and I can't wait to see her again! Her mom was an inspiration to me!
Today I found out that a high-school classmate of mine lost her baby at 34 weeks. I can't even imagine the pain she is feeling! My heart hurts soo sooo bad for her! UGH!
Please, just pray for these families! Our struggles are nothing compared to others'. I need to always be thankful and pray for others. I get down with my stuff that I am going through, but really, I couldn't be more blessed. Speaking of my stuff...
Thank you all for your prayers! Edward's MRI went well. Let me see...Dr. Mosca, Edward's feet/hip doc, said that his hips/pelvis are pretty board-like (flat). He showed me the MRI pictures of his hips and in one view they are flat, but in another, they show a little curve. So, when Edward has his feet surgery he will do an arthrogram of his hips. (They inject dye into the pelvis to see how much movement there is.) We will know more info then. In regards to his casting, Dr. Mosca doesn't think his feet will improve much more. Next Friday we go back and take xrays and probably schedule his surgery.
To his spine, well, I have to find a spine expert. With Dr. Song gone, I have to figure out who will treat Edward's spine. The good news is, is that his spinal cord is in the right place!
His brain...well, the focal encephalomalicia did not develop correctly. Exactly, I have no idea what that means. So, we have to be referred to a neurologist.
Today I found out that a high-school classmate of mine lost her baby at 34 weeks. I can't even imagine the pain she is feeling! My heart hurts soo sooo bad for her! UGH!
Please, just pray for these families! Our struggles are nothing compared to others'. I need to always be thankful and pray for others. I get down with my stuff that I am going through, but really, I couldn't be more blessed. Speaking of my stuff...
Thank you all for your prayers! Edward's MRI went well. Let me see...Dr. Mosca, Edward's feet/hip doc, said that his hips/pelvis are pretty board-like (flat). He showed me the MRI pictures of his hips and in one view they are flat, but in another, they show a little curve. So, when Edward has his feet surgery he will do an arthrogram of his hips. (They inject dye into the pelvis to see how much movement there is.) We will know more info then. In regards to his casting, Dr. Mosca doesn't think his feet will improve much more. Next Friday we go back and take xrays and probably schedule his surgery.
To his spine, well, I have to find a spine expert. With Dr. Song gone, I have to figure out who will treat Edward's spine. The good news is, is that his spinal cord is in the right place!
His brain...well, the focal encephalomalicia did not develop correctly. Exactly, I have no idea what that means. So, we have to be referred to a neurologist.
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| I LOVE this picture..taken the beginning of December. |
Thank you guys so much for your prayers and continue to pray for these other families!
Monday, January 23, 2012
Prayers
I woke up this morning to some very upsetting news. A fellow Freeman Sheldon family recently found out that their daughter, Kimber who has FSS, has a tumor behind her right eye. They find out if it is cancerous tomorrow. That has made me soooo emotional all day. I can barely handle it, just too close to home. Please pray that she is ok and that her tumor is NOT cancerous!
Tomorrow we drive to Seattle for Edward's MRI. I have had a terrible feeling about this MRI for a couple weeks now and the news this morning has not helped. Please pray that Edward and I will be safe driving and that his MRI results will be clear of any bad news. He also gets recast. It is all in the Lord's hands.
Tomorrow we drive to Seattle for Edward's MRI. I have had a terrible feeling about this MRI for a couple weeks now and the news this morning has not helped. Please pray that Edward and I will be safe driving and that his MRI results will be clear of any bad news. He also gets recast. It is all in the Lord's hands.
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| my baby as i speak |
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