Tuesday, May 28, 2013
Whoot whoot GOD IS CONSTANT!!!!
Luke's appointment went great today!!! We are so blessed and thankful to hear that LUKE is PERFECT!! It was a great ct scan! We actually got to see the pictures of his scan(and yes daddy got squeamish he admitted As soon as we walked out...he is such a trooper! ) the pictures were a lil crazy I have to admit! It was his teeth his expression face head etc! And you could see where the plates were where the work had been done...where there were small gaps from things dissolving! It was intense but the good thing is Dr. Reid was very pleased with it! He said there is no need for concern and that his head is in the 48th percentile and the shape is great and his scar healed nicely& with his hair you'll never even see the lil imperfections!!! We are so blessed!!! We don't go back until June 2014!!! We are so excited for an awesome summer that we can be completely present in! Daddy is on a "qi qi boy high" as he said! just so happy!!! We give GOD all the glory for the entire road we have walked on!!! He has been above and before it all and the amazing thing is....HE ALWAYS IS!!!!! He is faithful and CONSTANT!!!! And He loves us ALL the same!!!! THANK YOU all for standing firm with us in this crazy amazing journey! What a 15 months it has been an I am so grateful for each and everyone of you that we couldn't have made it through without you!!!!!
Wednesday, May 22, 2013
Update on Luke
MY HOPE IS BUILT ON NOTHING LESS....THAN JESUS BLOOD AND RIGHTEOUSNESS....I DARE NOT TRUST THE SWEETEST FRAME, BUT WHOLLY TRUST IN JESUS NAME....
Well I am back on the blog....as I have intended to keep updating for many reasons I just have not stayed committed in all the busynes of our healthy and fun little boys! However there is some reasons I am back! One...to update you all about how Luke is doing currently and what we have been going through and two to keep you updated in the future not just on him but on all of us and I really do enjoy writting! So I am back on the blog and hope I can stay a while! So first things firsts....the past 3-5 months have been wonderful. We had a great check up for Luke in December...his plastic surgeon said his head was perfect and in the 52 percentile(not too big and not too little) and despite a few little bumps from the way his head molded(which have smoothed out tremendously and aren't even noticable any more) that he looked wonderful! He told us he would see us in June for his routine 1 year post surgery ct scan and review that he does with every paitent and scheduled ours for June 24th. Well last Saturday Luke woke up (after suffering from a little bug all week) from his afternoon nap and was walking a little funny. I thought at first it seemed as though it was asleep or maybe he twisted his lil ankle because he was walking with a limp kind of and rolling his foot out. Well Sunday he was definatly doing it noticiably at church w/ a little stiff leg but his foot seemed better. I was hoping Monday it would be gone but it wasn't. Of course I didn't really think that his leg could have anything to do with his head however of course since it being so relevant and not even quite a year ago we went through this surgery etc....I just still kind of related it for some reason. Well Monday we had his 15 month well baby check up so I figured I'd mention it to his pediatrician...he did not see any concern for Luke's leg he thought it was just a phase in his walking as he tried to go fast(I'm telling you...to us who watch him walk all the time it did not look right and people that see him often agreed) so I felt happy to hear that of course and Luke was in no pain and showed to reaction to his new found stiff little gimp he was carrying but still it just didn't seem right. Well after everything checked out perfect on his little body and he passed wonderfully in his development packet our pediatrician was charting everything in his tablet and said he did want to show me his head chart...he felt as though his head was not progressing in size up the scale as it should. He said that it should be going up at a diagonal more and Luke's did until about 9/10 months and then seemed to be staying the same only going up slightly. He has averaged about a 1/4 of an inch growth per visit. So to put it into my own perspective...Lane's head was the same size as Luke's is right now when he was 9 months(now I know Lane has a bigger head like his Momma and Luke may just have a smaller head like his Daddy but that still was unsettling) Anyways his pediatrician printed out his chart and asked me to show his surgeon in Chicago and even though he did not think the walking issue was related he did admit he wasn't by any means skilled in Luke's past situation so he didn't want to rule anythying out. So after crying in his office hearing that Luke's head was "below average" and feeling a little stressed that my perfect little man who's been walking for 5 months is now limping and we don't know why...I had a hard cry all the way home, I called Chicago and they said they'd inform his surgeon and get back to me...I cried on the phone, everytime I talked about it, to my hubby(a little more than just a cry), and dealt with a lot of emotion I didn't even realize I had. I feel as though Matt and I have a master's degree in trusting God! We've had a lot more experience than some(however I still am so beyond blessed that I have had much less) but you know what I mean. So when this arised it wasn't by any means a "trust issue"...I completly trusted him from the get go with my whole being it was more of a "shock" reaction. Like "wait a minute...he is perfect...looks great, head great, attitude great, developing great" and.....THERE'S AN ISSUE??? What issue??? Our child is perfect...it was a hard road...but we made it to perfection and now....whatt did you just say????? That is where my crying came from. Well after all that Luke woke up REMARKABLY better with his walking that afternoon (Duh?!...God you are so good!!) and by Tuesday morning he was completly normal! PTL! (part of my anxious heart was his walking, his dr. not knowing why, but not ruling anything out due to his past condition etc... ) In the mean time I spoke to his nurse in Chicago and she did email Dr. Reid and he did want to see Luke earlier than June. I emailed him the picture of his head size chart and by yesterday afternoon they said we could come the next day(today ) for a ct scan. I was relieved because all I wanted was to know how his head was and if his brain did indeed have enough room inside his head(which we assume it does because he shows no sign of cranial pressure...however lets say if his head is 3 inches to small and his brain is up to normal size that could create a problem) So like I said I was relieved however I also felt a little urgency in my heart like "why so soon" however I know God has the ultimate plan, He goes before us in every situation so I just took my eyes right off that and back to him. Well we left at 6 am today and went to his ct scan. We got there which normally took us 3-3 1/2 hours right down to the last 5 minutes (traffic traffic TRAFFIC!!) but we ended up waiting a little anyways and Luke was sleeping so that was ok. After lots and lots of trying with the nurses, and child life specialists...we just couldn't get him to lay back and do it still enough so we ended up having to have him sedated...(this post is getting very lengthy so I'll spare you every detail of him pulling my hair, gripping me like never before, shuttering, having oxygen up his nose etc...it was awful and I cried right along with him) but they sedated him fairly quickly and he was literally asleep less than 10 minutes and with in 10 minutes of being awake he was high fiving us and telling the nurses how old he was :) Such a little champ that one! Anyways so after another long 4 hour ride home we made it and he took a good long nap...so good we couldnt even get him to wake up barely he wanted the rest...and who can blame him after the day he had. Well I got my ipad out to email Dr. Reid asking him if we could by chance get a phone call or an email to update us on how his ct scan was and if his little brain had plenty of room in there etc...before out appt. this coming tuesday(dr. reid is still going to see him regardless of what the scan said b/c like I said it's just protocall one year post surgery) and when I got into my email I had a response from him I had not seen yet in regards to his head chart. It said that he was glad we could get in early and that he'd see us soon and to not worry that the important thing is that Luke is doing well!! WHEW what a relief!! Obviously the final factor is just to know that everything looks great inside, all plates, screws, pins are dissolved that even inspite of his smaller head that his brain has plenty of room and that he is ok in there but that still helped me feel relief in regards to his head chart. We feel if he was worried by that picture(like our pediatrican was and like we were from his opinion) than he wouldn't have said "do not worry the important thing is Luke is doing well" which is so true! He is PERFECT on the outside...so I am trying to remind myself perfect outside, perfect inside. And He is made in CHRIST'S image!! Perfect, healthy and whole AMEN!!! So that is where we are at now....the scan is done...we go back Tuesday the 28th for a full report and we are hoping to hear from Dr. Reid via email or phone how the scan looked before then. We are sorry for those who did not hear about this prior...what a whirlwind...walking different, well baby check up, head size concern, calling chicago, next day ct scan etc! There was a lot of factors why I didnt' get an email out sooner and I'm sorry if anyone heard 2nd or 3rd party. PLEASE pray for Luke and thank God for his goodness!! We are believing he is going to bring us through like the last time HE did!!
"ALL OUR HOPE IS IN YOU, ALL THE GLORY TO YOU GOD..THE LIGHT OF THE WORLD...JESUS MESSIAH NAME ABOVE ALL NAMES BLESSED REDEEMER EMMANUEL!!"
Well I am back on the blog....as I have intended to keep updating for many reasons I just have not stayed committed in all the busynes of our healthy and fun little boys! However there is some reasons I am back! One...to update you all about how Luke is doing currently and what we have been going through and two to keep you updated in the future not just on him but on all of us and I really do enjoy writting! So I am back on the blog and hope I can stay a while! So first things firsts....the past 3-5 months have been wonderful. We had a great check up for Luke in December...his plastic surgeon said his head was perfect and in the 52 percentile(not too big and not too little) and despite a few little bumps from the way his head molded(which have smoothed out tremendously and aren't even noticable any more) that he looked wonderful! He told us he would see us in June for his routine 1 year post surgery ct scan and review that he does with every paitent and scheduled ours for June 24th. Well last Saturday Luke woke up (after suffering from a little bug all week) from his afternoon nap and was walking a little funny. I thought at first it seemed as though it was asleep or maybe he twisted his lil ankle because he was walking with a limp kind of and rolling his foot out. Well Sunday he was definatly doing it noticiably at church w/ a little stiff leg but his foot seemed better. I was hoping Monday it would be gone but it wasn't. Of course I didn't really think that his leg could have anything to do with his head however of course since it being so relevant and not even quite a year ago we went through this surgery etc....I just still kind of related it for some reason. Well Monday we had his 15 month well baby check up so I figured I'd mention it to his pediatrician...he did not see any concern for Luke's leg he thought it was just a phase in his walking as he tried to go fast(I'm telling you...to us who watch him walk all the time it did not look right and people that see him often agreed) so I felt happy to hear that of course and Luke was in no pain and showed to reaction to his new found stiff little gimp he was carrying but still it just didn't seem right. Well after everything checked out perfect on his little body and he passed wonderfully in his development packet our pediatrician was charting everything in his tablet and said he did want to show me his head chart...he felt as though his head was not progressing in size up the scale as it should. He said that it should be going up at a diagonal more and Luke's did until about 9/10 months and then seemed to be staying the same only going up slightly. He has averaged about a 1/4 of an inch growth per visit. So to put it into my own perspective...Lane's head was the same size as Luke's is right now when he was 9 months(now I know Lane has a bigger head like his Momma and Luke may just have a smaller head like his Daddy but that still was unsettling) Anyways his pediatrician printed out his chart and asked me to show his surgeon in Chicago and even though he did not think the walking issue was related he did admit he wasn't by any means skilled in Luke's past situation so he didn't want to rule anythying out. So after crying in his office hearing that Luke's head was "below average" and feeling a little stressed that my perfect little man who's been walking for 5 months is now limping and we don't know why...I had a hard cry all the way home, I called Chicago and they said they'd inform his surgeon and get back to me...I cried on the phone, everytime I talked about it, to my hubby(a little more than just a cry), and dealt with a lot of emotion I didn't even realize I had. I feel as though Matt and I have a master's degree in trusting God! We've had a lot more experience than some(however I still am so beyond blessed that I have had much less) but you know what I mean. So when this arised it wasn't by any means a "trust issue"...I completly trusted him from the get go with my whole being it was more of a "shock" reaction. Like "wait a minute...he is perfect...looks great, head great, attitude great, developing great" and.....THERE'S AN ISSUE??? What issue??? Our child is perfect...it was a hard road...but we made it to perfection and now....whatt did you just say????? That is where my crying came from. Well after all that Luke woke up REMARKABLY better with his walking that afternoon (Duh?!...God you are so good!!) and by Tuesday morning he was completly normal! PTL! (part of my anxious heart was his walking, his dr. not knowing why, but not ruling anything out due to his past condition etc... ) In the mean time I spoke to his nurse in Chicago and she did email Dr. Reid and he did want to see Luke earlier than June. I emailed him the picture of his head size chart and by yesterday afternoon they said we could come the next day(today ) for a ct scan. I was relieved because all I wanted was to know how his head was and if his brain did indeed have enough room inside his head(which we assume it does because he shows no sign of cranial pressure...however lets say if his head is 3 inches to small and his brain is up to normal size that could create a problem) So like I said I was relieved however I also felt a little urgency in my heart like "why so soon" however I know God has the ultimate plan, He goes before us in every situation so I just took my eyes right off that and back to him. Well we left at 6 am today and went to his ct scan. We got there which normally took us 3-3 1/2 hours right down to the last 5 minutes (traffic traffic TRAFFIC!!) but we ended up waiting a little anyways and Luke was sleeping so that was ok. After lots and lots of trying with the nurses, and child life specialists...we just couldn't get him to lay back and do it still enough so we ended up having to have him sedated...(this post is getting very lengthy so I'll spare you every detail of him pulling my hair, gripping me like never before, shuttering, having oxygen up his nose etc...it was awful and I cried right along with him) but they sedated him fairly quickly and he was literally asleep less than 10 minutes and with in 10 minutes of being awake he was high fiving us and telling the nurses how old he was :) Such a little champ that one! Anyways so after another long 4 hour ride home we made it and he took a good long nap...so good we couldnt even get him to wake up barely he wanted the rest...and who can blame him after the day he had. Well I got my ipad out to email Dr. Reid asking him if we could by chance get a phone call or an email to update us on how his ct scan was and if his little brain had plenty of room in there etc...before out appt. this coming tuesday(dr. reid is still going to see him regardless of what the scan said b/c like I said it's just protocall one year post surgery) and when I got into my email I had a response from him I had not seen yet in regards to his head chart. It said that he was glad we could get in early and that he'd see us soon and to not worry that the important thing is that Luke is doing well!! WHEW what a relief!! Obviously the final factor is just to know that everything looks great inside, all plates, screws, pins are dissolved that even inspite of his smaller head that his brain has plenty of room and that he is ok in there but that still helped me feel relief in regards to his head chart. We feel if he was worried by that picture(like our pediatrican was and like we were from his opinion) than he wouldn't have said "do not worry the important thing is Luke is doing well" which is so true! He is PERFECT on the outside...so I am trying to remind myself perfect outside, perfect inside. And He is made in CHRIST'S image!! Perfect, healthy and whole AMEN!!! So that is where we are at now....the scan is done...we go back Tuesday the 28th for a full report and we are hoping to hear from Dr. Reid via email or phone how the scan looked before then. We are sorry for those who did not hear about this prior...what a whirlwind...walking different, well baby check up, head size concern, calling chicago, next day ct scan etc! There was a lot of factors why I didnt' get an email out sooner and I'm sorry if anyone heard 2nd or 3rd party. PLEASE pray for Luke and thank God for his goodness!! We are believing he is going to bring us through like the last time HE did!!
"ALL OUR HOPE IS IN YOU, ALL THE GLORY TO YOU GOD..THE LIGHT OF THE WORLD...JESUS MESSIAH NAME ABOVE ALL NAMES BLESSED REDEEMER EMMANUEL!!"
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