I basically put all of the important stuff about us on Facebook, so this blog just gets tossed to the side unless something BIG (and by big, I mean bad) happens. I am very thankful that I have not had to post in here lately because that mean things with Leighton have been mostly good. Yay!
Since my last post, Leighton did have the surgery to straighten his eye and Dr. DeVaro remains in awe of Dr. Hubbard's work. When he got in there he said that the scarring was minimal (for what had been done to that eye) and the surgery that he (Dr. DeVaro) did went over just fine. His eye still looks fine and we hope that was the last of the surgeries for his poor little eye that has been through soooo much.
Leighton started Kindergarten and is halfway through the year. So far, things have been awesome. He's doing really well with everything that they are learning. Most recently they have started studying spelling words and will have their first test on Friday. Leighton knows the first 5 words already (without studying) so I've asked that they send 5 more and I have no doubts he will do just fine. He can read very well and has made 100s on all of his Accelerated Reader test so far. Yes, I am a VERY proud mom.
The only two "bad" things that have happened, and that are currently going on, are the fact that I haven't found a job STILL despite looking and sending out resumes almost daily and we had to move out of our first home together (and quickly) due to a leaking roof and mold issue. I am still desperately looking for work that fits our schedule and once I find a job, we will be looking for a house to buy (a forever home, actually). I am very excited about the upcoming possibilities for our family and I'm TRYING to wait patiently for everything to fall in place!
Hope you all enjoyed that little catch up ...
-Christina
Tuesday, January 28, 2014
Thursday, August 1, 2013
I'm only like two months late ...
Well ... as most of you know at this point, Leighton's last eye surgery was successful and "easy" ... by the time we got back to the hotel room and took a nap (all of us needed one), Leighton was fine ... ready to go like nothing had happened (other than the eye patch he had to keep on the rest of the day and through the night that he HATED)! We've made 2 trips since surgery to see Dr. Hubbard (the last one without a GPS ... oh yeah, I'm proud) ... and now Leighton is cleared for his fourth (and hopefully final) surgery which will take place next Thursday, August 8th. Dr. DeVaro will do his surgery here in Savannah and it will be to straighten out his eye so that hopefully the little bit of vision he has in it (we're almost positive he only sees light) will be in line the way it is supposed to be. The surgery itself is pretty standard but recovery time (usually up to a week) could actually be a little longer for Leighton because with all of his previous surgeries there is some scar tissue there now. Dr. DeVaro is also not 100% sure how much he will have to do once he gets in there because obviously he can't see everything that is going on with his muscles before then. Hopefully everything will be healed and ready for school to start the following Monday, but we will have to play that by ear.
After Leighton's surgery, he had a CF clinic appointment that went really well ... he gained weight and I did the happy dance (I think his doctors wanted to do one too)!! He had his annual labs that day and all of his levels came back fine and his culture was alright too (just the usual staph) ... Thank God things are still looking good from a CF standpoint!!
Leighton will be starting Kindergarten this year and I feel like my heart is breaking ... I really can't believe my baby is already in Kindergarten ... I have to set up a meeting with his teachers some time (soon) to discuss his medical issues with them ... I know that the principal is super nice but for some reason I am nervous about all of this ... we never treat Leighton a lot different because of CF but I know that in school he is just going to have to do things that are a little different and he's going to have to be more responsible than the other kids so that he will stay healthy. I've toyed with the thought of letting him do everything like his classmates just so that he doesn't feel different or so that the other kids don't see that he is different and because we treat him "normal" at home, but his health is always going to be our number one priority and hopefully things will be easy on him. I just hope I can get everyone on board and on the same page.
In other news ... Mommy is job hunting ... Daddy is still working very hard for our family ... and JACK is still a pain in our butts (but we love him)!!
Love you all
- C
After Leighton's surgery, he had a CF clinic appointment that went really well ... he gained weight and I did the happy dance (I think his doctors wanted to do one too)!! He had his annual labs that day and all of his levels came back fine and his culture was alright too (just the usual staph) ... Thank God things are still looking good from a CF standpoint!!
Leighton will be starting Kindergarten this year and I feel like my heart is breaking ... I really can't believe my baby is already in Kindergarten ... I have to set up a meeting with his teachers some time (soon) to discuss his medical issues with them ... I know that the principal is super nice but for some reason I am nervous about all of this ... we never treat Leighton a lot different because of CF but I know that in school he is just going to have to do things that are a little different and he's going to have to be more responsible than the other kids so that he will stay healthy. I've toyed with the thought of letting him do everything like his classmates just so that he doesn't feel different or so that the other kids don't see that he is different and because we treat him "normal" at home, but his health is always going to be our number one priority and hopefully things will be easy on him. I just hope I can get everyone on board and on the same page.
In other news ... Mommy is job hunting ... Daddy is still working very hard for our family ... and JACK is still a pain in our butts (but we love him)!!
Love you all
- C
Sunday, June 9, 2013
Third time's a charm ... but not really ...
I've started a million blogs the past 3 months all at god awful hours of the morning so none of them ever got finished or posted ... so as I'm sitting here in the hotel room in Atlanta with nothing to clean and nothing to watch on my DVR (or tv at all for that matter since it is off so Mema and Leighton can sleep) I will blog ... the only distraction is the fact that I should be showering and going to bed ... but sleep is sure to elude me tonight ... so it's you, me, and the air conditioner running as background noise ...
Tomorrow marks surgery number three for Leighton's eye ... the doctor has assured us that it is a very simple procedure and it will only take him about 15 minutes once he gets started ... at this point the eye isn't my main concern ... I HATE that he has to be put to sleep ... AGAIN! Not only that ... but they are seriously going in to take off the buckle that they put on two years ago ... and HOPE that it did its job ... I mean ... really?! It sounds crazy I know, but knowing everything I do about all that has gone on, I know that it's necessary and that it is what is best for Leighton ... I just don't like my baby going through this ... again ... After he heals from this surgery (which they said wouldn't be long because there's "nothing to it") then he will have one more in Savannah to straighten this eye that he cannot see out of. Maybe, just maybe, that will be all for him when it comes to this eye ... now when he gets older they MIGHT be able to do something to make it where he can see some out of it, but we will cross that bridge when we get to it! At least then he will be old enough to have a say so and I don't feel terrible about making the decisions without him. My nerves are shot and I can't even imagine how he feels ... but I will say he's been a real trooper through all of this ... he hasn't cried or let on that he was upset or scared about anything and he knows exactly what is going on ... I think my four year old is wise beyond his years for sure ...
On another note ... Leighton is no longer a preschooler ... my boy is heading to kindergarten! On his awards day, he got 6 awards (reading, improved handwriting, doughnut sales, good conduct, goodness gracious great balls of fire [for his boundless energy and enthusiasm], and Mr. Personality) ... I could not be more proud of him! I cannot believe how fast my baby is growing up and I am terrified of going to bed one night and waking up on his graduation day. Can someone please slow time down?!
I guess I never blogged after his sinus surgery, huh?! Most of you are on my Facebook so you know he did fabulous. Again, he knows more and does more than an almost five year old should, but that's part of what makes him awesome. But really, the surgery went well, except waking up from anesthesia when he was scared and in pain and wouldn't stop crying ... thank God that after another dose of medicine he went to sleep and felt MUCH better when he woke back up! Then, when it was time for the doctor to take the packing out, Leighton just did it himself ... shocked and impressed me and the doctor!
There is so much more to write about but I really need to try and get a nap ... 5 am comes early ... check-in time is 6:30 ... everyone please include us in your prayers tonight and tomorrow ... thank you!!
Love - C
Tomorrow marks surgery number three for Leighton's eye ... the doctor has assured us that it is a very simple procedure and it will only take him about 15 minutes once he gets started ... at this point the eye isn't my main concern ... I HATE that he has to be put to sleep ... AGAIN! Not only that ... but they are seriously going in to take off the buckle that they put on two years ago ... and HOPE that it did its job ... I mean ... really?! It sounds crazy I know, but knowing everything I do about all that has gone on, I know that it's necessary and that it is what is best for Leighton ... I just don't like my baby going through this ... again ... After he heals from this surgery (which they said wouldn't be long because there's "nothing to it") then he will have one more in Savannah to straighten this eye that he cannot see out of. Maybe, just maybe, that will be all for him when it comes to this eye ... now when he gets older they MIGHT be able to do something to make it where he can see some out of it, but we will cross that bridge when we get to it! At least then he will be old enough to have a say so and I don't feel terrible about making the decisions without him. My nerves are shot and I can't even imagine how he feels ... but I will say he's been a real trooper through all of this ... he hasn't cried or let on that he was upset or scared about anything and he knows exactly what is going on ... I think my four year old is wise beyond his years for sure ...
On another note ... Leighton is no longer a preschooler ... my boy is heading to kindergarten! On his awards day, he got 6 awards (reading, improved handwriting, doughnut sales, good conduct, goodness gracious great balls of fire [for his boundless energy and enthusiasm], and Mr. Personality) ... I could not be more proud of him! I cannot believe how fast my baby is growing up and I am terrified of going to bed one night and waking up on his graduation day. Can someone please slow time down?!
I guess I never blogged after his sinus surgery, huh?! Most of you are on my Facebook so you know he did fabulous. Again, he knows more and does more than an almost five year old should, but that's part of what makes him awesome. But really, the surgery went well, except waking up from anesthesia when he was scared and in pain and wouldn't stop crying ... thank God that after another dose of medicine he went to sleep and felt MUCH better when he woke back up! Then, when it was time for the doctor to take the packing out, Leighton just did it himself ... shocked and impressed me and the doctor!
There is so much more to write about but I really need to try and get a nap ... 5 am comes early ... check-in time is 6:30 ... everyone please include us in your prayers tonight and tomorrow ... thank you!!
Love - C
Thursday, March 7, 2013
Rolling with the punches ...
I have some good news ... and some bad news ... Let's start with the good ...
Dr. Poole was able to get in touch with Barbara (in Atlanta) and they decided that it was okay for Leighton to have the surgery here and just have his treatment at home (with me) ... Barbara doesn't think there is any reason for a tune-up because we have been lucky enough not to have any serious lung issues ... they are going to take another good look at him next week (in Atlanta) just to be sure but I think we will get the all clear so that is great news ... my baby shouldn't have to stay in the hospital at all for this and if he does it will only be for one night AND we get to stay in Savannah!! Praise the Lord!
Now ... the bad stuff ... we went to the eye doctor (Dr. DeVaro) last week and his bad eye is getting worse as far as crossing ... he can't see anything out of it at all so there is no reason for him to try and since he isn't using it, it really just does what it wants ... now they can fix that and they want to because it is wandering so far back in his head but to do it is going to be tricky. The buckle that Dr. Hubbard (his Atlanta eye doctor) had to put on during his last surgery is kind of in the way ... so we are going to see him in a couple of months (well a little less than two) to see what he thinks we need to do. Either he can go in and remove the buckle (and hope that the retina has attached itself and will stay) and then he can just fix the crossing (or Dr. DeVaro would do it afterwards here) OR ... Dr. DeVaro can go in and try to work around the buckle which I don't think he feels very comfortable with ... either way it is ANOTHER surgery for my sweet boy ... if not two ... He cannot catch a break ... of course none of this bothers him (partially because he doesn't understand) but I will GLADLY take this stress so that he doesn't have to have a clue ...
On another positive note ... today is the first day in over a month of fighting with bronchitis (round 2 antibiotics and steroids started Monday), stress, no sleep, worry, and so on that I can say I'm getting better ... things are getting better ... maybe I'm just learning how to deal ... maybe the meds are working :) ... or maybe I'm numb to it all ... regardless, I feel better today!
Last thing (REAL GOOD NEWS!!) ... Last weekend was the big car show for Leighton's Helpers and we raised over $2000 ... and I personally think that is a reason to celebrate ... BIG thank yous to all of our volunteers, sponsors, "cheerleaders", and everyone that came out and made it all possible ... Leighton's Helpers wouldn't exist if it weren't for you guys!!
I'm falling asleep at the keyboard right now so I'm gonna go ... goodnight!!
-C
Dr. Poole was able to get in touch with Barbara (in Atlanta) and they decided that it was okay for Leighton to have the surgery here and just have his treatment at home (with me) ... Barbara doesn't think there is any reason for a tune-up because we have been lucky enough not to have any serious lung issues ... they are going to take another good look at him next week (in Atlanta) just to be sure but I think we will get the all clear so that is great news ... my baby shouldn't have to stay in the hospital at all for this and if he does it will only be for one night AND we get to stay in Savannah!! Praise the Lord!
Now ... the bad stuff ... we went to the eye doctor (Dr. DeVaro) last week and his bad eye is getting worse as far as crossing ... he can't see anything out of it at all so there is no reason for him to try and since he isn't using it, it really just does what it wants ... now they can fix that and they want to because it is wandering so far back in his head but to do it is going to be tricky. The buckle that Dr. Hubbard (his Atlanta eye doctor) had to put on during his last surgery is kind of in the way ... so we are going to see him in a couple of months (well a little less than two) to see what he thinks we need to do. Either he can go in and remove the buckle (and hope that the retina has attached itself and will stay) and then he can just fix the crossing (or Dr. DeVaro would do it afterwards here) OR ... Dr. DeVaro can go in and try to work around the buckle which I don't think he feels very comfortable with ... either way it is ANOTHER surgery for my sweet boy ... if not two ... He cannot catch a break ... of course none of this bothers him (partially because he doesn't understand) but I will GLADLY take this stress so that he doesn't have to have a clue ...
On another positive note ... today is the first day in over a month of fighting with bronchitis (round 2 antibiotics and steroids started Monday), stress, no sleep, worry, and so on that I can say I'm getting better ... things are getting better ... maybe I'm just learning how to deal ... maybe the meds are working :) ... or maybe I'm numb to it all ... regardless, I feel better today!
Last thing (REAL GOOD NEWS!!) ... Last weekend was the big car show for Leighton's Helpers and we raised over $2000 ... and I personally think that is a reason to celebrate ... BIG thank yous to all of our volunteers, sponsors, "cheerleaders", and everyone that came out and made it all possible ... Leighton's Helpers wouldn't exist if it weren't for you guys!!
I'm falling asleep at the keyboard right now so I'm gonna go ... goodnight!!
-C
Wednesday, February 20, 2013
My sweet boy and surgery #3 ...
Ok ... in my October post I told you guys that Leighton had been having some upper respiratory junk ... well ... every month since then as soon as he's come off of an antibiotic, this crap came back ... I just realized that it's been 4 months since my last post (before these 3) ... Jeez ... Sorry ... the holidays were excellent ... anyway ... back on track ... they started referring to this upper respiratory junk as sinus infections ... Really?! He inherited my bad sinus gene too?! Poor kid ... so ... we were back to the ENT (Dr. Poole) for some camera in the nose action (which Leighton thought was great) and a CT scan ...
That brings me to yesterday (I'm trying to bring everyone up-to-date without missing anything and without taking forever to do it so if you think I'm missing something important ... feel free to comment ... thanks) ... We went to see Dr. Poole for a consultation because of how "abnormal" Leighton's CT scan came back ... Apparently Leighton's sinus cavities by his nose are staying full which means they are a breeding ground for bacteria (not to mention he's got to be miserable) and they need to be drained ... they have actually already pushed out the walls inside of his nose because they are so packed full ... Sorry this is a little gross ... nobody said it was gonna pleasant ... In most cases this would be a simple day surgery ... go in, drain sinuses, go home ... but when has Leighton ever been like everyone else?! Exactly, but actually all CF patients that have this done usually stay in the hospital for a couple of days and get a "tune-up" ... some antibiotics and just keeping a close watchful eye on them. During this stay he would need to be observed and watched over by a pulmonologist ... of course, in Savannah the only pediatric pulmonologist is Dr. Lovrekovic and I personally think she is a whack job that doesn't have anyone's kid's best interest at heart ... she doesn't give proper care and I do NOT want to have to depend on her to take care of Leighton (I am not the only one who feels that way about her ... I know other parents and doctors that feel the same way) ... so what this means is, I am waiting to hear back from the CF team in Atlanta to see where they want to go from here ... Do we go to Atlanta and have this done? Does he actually need the "tune-up"? There are a million more questions but I know you guys don't have time for all that (Ain't nobody got time for that!!) ...
UGH ... so ... we wait ... and I worry ... you see this sinus stuff isn't going to be a one time thing for Leighton ... he's only 4 and it's already THIS bad ... He could have to do this every couple of months ... a hospital stay ... every couple of months ... then to do it away from home ... yes, I could do it here ... but do I sacrifice my child's health for convenience and time? If you have to think about that you either aren't a parent, or you aren't a very good one ... The surgery itself should be very simple, but the multiple surgeries afterwards ... the hospital stays ... I've thought we were doing good because he hasn't had lung issues ... guess I was wrong?!
When I know more, I will post again ... but that's all I've got for now ... and it may be too much ...
- C
That brings me to yesterday (I'm trying to bring everyone up-to-date without missing anything and without taking forever to do it so if you think I'm missing something important ... feel free to comment ... thanks) ... We went to see Dr. Poole for a consultation because of how "abnormal" Leighton's CT scan came back ... Apparently Leighton's sinus cavities by his nose are staying full which means they are a breeding ground for bacteria (not to mention he's got to be miserable) and they need to be drained ... they have actually already pushed out the walls inside of his nose because they are so packed full ... Sorry this is a little gross ... nobody said it was gonna pleasant ... In most cases this would be a simple day surgery ... go in, drain sinuses, go home ... but when has Leighton ever been like everyone else?! Exactly, but actually all CF patients that have this done usually stay in the hospital for a couple of days and get a "tune-up" ... some antibiotics and just keeping a close watchful eye on them. During this stay he would need to be observed and watched over by a pulmonologist ... of course, in Savannah the only pediatric pulmonologist is Dr. Lovrekovic and I personally think she is a whack job that doesn't have anyone's kid's best interest at heart ... she doesn't give proper care and I do NOT want to have to depend on her to take care of Leighton (I am not the only one who feels that way about her ... I know other parents and doctors that feel the same way) ... so what this means is, I am waiting to hear back from the CF team in Atlanta to see where they want to go from here ... Do we go to Atlanta and have this done? Does he actually need the "tune-up"? There are a million more questions but I know you guys don't have time for all that (Ain't nobody got time for that!!) ...
UGH ... so ... we wait ... and I worry ... you see this sinus stuff isn't going to be a one time thing for Leighton ... he's only 4 and it's already THIS bad ... He could have to do this every couple of months ... a hospital stay ... every couple of months ... then to do it away from home ... yes, I could do it here ... but do I sacrifice my child's health for convenience and time? If you have to think about that you either aren't a parent, or you aren't a very good one ... The surgery itself should be very simple, but the multiple surgeries afterwards ... the hospital stays ... I've thought we were doing good because he hasn't had lung issues ... guess I was wrong?!
When I know more, I will post again ... but that's all I've got for now ... and it may be too much ...
- C
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