Today was one for the record books. After being 30 minutes late for Dr. Rahbar (a potty stop and no parking available), we were still in and out of his office in one hour. A record.
Sloane did very well. She entertained herself, during our very short wait, running around the exam room. Daddy's orders! This am, as we left, he said "Babe, remember let her run around until he gets there." LOL Almost on cue, Dr. Rahbar came in and was greeted by our frequent friend..."Miss Wheeze". Before I could motion toward Sloane and her friend Miss Wheeze, Dr. Rahbar looked in her direction and he himself listened intently to Sloane who was now resting after her sprints around the room.
We chatted for a few minutes. Sloane was happy to tell him how she didn't share at preschool yesterday and instead asking for a turn, she took all the toys from her friends. SUPER!????!!! Another blog for another day. Once we are done with our "sharing is caring" convo, Dr. Rahbar lets Sloane know that he is going to take a look down her nose. He did a soft bedside scope today which I welcomed. He hasn't taken a look in Sloane's airway in over an year.
Once the doc told Sloane about the scope, it was like she was in a trance controlled by his words. This man has the most wonderful bedside manner!! She did as he asked and even got involved in the scope. I could not have been prouder of her. The truth is though...mammie and I agreed that we would have gladly had that probe sent down our noses too after Dr. Rahbar asked us. There is just something about the way he approaches the situation that makes you want to be part of the team. His team. The please put that foreign object down my nose for a minute of two team......HA!
Sloane's cleft looked good. Miss Wheeze, on the other hand, didn't sound good. Dr. Rahbar handled me with the conversation about him taking a look in Sloane's airway the same way he handled Sloane with the scope. I listened as he clearly discussed why he wants to take a deeper look in her throat.
Sloane, as we knew, was born with tight vocal cords. Her cords do not open as much as they should. It has had no effect on her speech or projection of sound....as anyone who knows her can tell. Chatty Kathy!! Dr. Rahbar mentioned her cords to me as a reason why she frequently wheezes. They may not open enough when she needs more air after bring winded...hence the wheeze. He wants a deep look to see if that is the case OR if Sloane was born with a narrower airway which could also be a reason for Miss Wheeze and Sloane's frequent croup events. Dr. Rahbar does feel that Sloane's wheeze is not a sign of asthma at this point. Miss Wheeze resides in Sloane's throat not in her lungs by the sounds of it.
Having a deeper look will help determine Why? Miss Wheeze pops up every once and a while. What will happen once we have the reason for the wheeze is not clear at this point. Sloane having another anatomical defect in her airway would not be surprising bc her Laryngeal Cleft was so severe. Neither her tight cords or narrower airway concern me at this point...I think if they were major issues, we would know about it by now. Both are not ideal, but neither appears to be life altering.
I signed all the papers for the scope...not thrilled about Sloane having anesthesia again or staying over night at the hospital........but I agree that having a reason for the wheeze at this point is almost necessary. My hubby is traveling so the date for the scope is on hold until we can discuss our thoughts together and make a plan but, we did decide that we would get the scope down in record time....well before the start of cold & flu season.
Tuesday, September 17, 2013
Tuesday, September 10, 2013
Then and Now
Three years ago at this exact moment, life in our home was the complete opposite that it is right now. Today, September 10th, is the day we took Sloane home from the NICU. She was 10 days shy of 2 months old. Our home was crowded with medical supplies, on high alert, scheduled down to each minute of a day, and a revolving door of our circle of trust. I have blogged about the scene back then many times I wont bore you with the details again.
Tonight, 3 years later....our home has no medical supplies, is relaxed on all accounts and hasn't had a player in the circle of trust drop by for anything other than a visit. Actually, the only thing I can hear right now is my own munching on carrots and the crickets outside. The hubby is away on a trip so the house is on lock down and silence is welcomed.
Next week at this time, we will have seen Dr. Rahbar and I'll have an update on our LC world. We have all started to gather our thoughts, opinions and questions. Mammie and I are making the trip as she has for all the appointments over the past 3 years. She has clearly earned her place to voice her thoughts and opinions openly. The 3 of us are in agreement that at this point we DO NOT feel as though Sloane needs a 2nd operation or a exploratory look in her airway. She has done well in the last 4 months is the consensus. With only 1 week to go, I almost wince at typing these words. Dr. Rahbar may come to the table with an opinion or an outlook that we haven't considered and that may be a game changer.....
Three years ago, I know for a fact I did not sleep tonight. We did not sleep for weeks after we arrived home with Sloane. The whirl of the feeding tube pump and fear of aspiration kept us up around the clock. Three years later, I know that I am exhausted and will eagerly hit the sheets momentarily with only fears of over sleeping lingering...LOL
Tonight, 3 years later....our home has no medical supplies, is relaxed on all accounts and hasn't had a player in the circle of trust drop by for anything other than a visit. Actually, the only thing I can hear right now is my own munching on carrots and the crickets outside. The hubby is away on a trip so the house is on lock down and silence is welcomed.
Next week at this time, we will have seen Dr. Rahbar and I'll have an update on our LC world. We have all started to gather our thoughts, opinions and questions. Mammie and I are making the trip as she has for all the appointments over the past 3 years. She has clearly earned her place to voice her thoughts and opinions openly. The 3 of us are in agreement that at this point we DO NOT feel as though Sloane needs a 2nd operation or a exploratory look in her airway. She has done well in the last 4 months is the consensus. With only 1 week to go, I almost wince at typing these words. Dr. Rahbar may come to the table with an opinion or an outlook that we haven't considered and that may be a game changer.....
Three years ago, I know for a fact I did not sleep tonight. We did not sleep for weeks after we arrived home with Sloane. The whirl of the feeding tube pump and fear of aspiration kept us up around the clock. Three years later, I know that I am exhausted and will eagerly hit the sheets momentarily with only fears of over sleeping lingering...LOL
Friday, September 6, 2013
Hurry, Hurry, Hurry
Well, we made it thru our first week of school. Both Sloane and I survived! LOL! It is a new adjustment for the whole family; there is a certain sense of hurry, hurry, hurry in the morning now. We had been without that for the majority of the time in our house over the last 3 years.
I am working on accepting the loss of control I have now. I had to hand over my keys to nonni so she could pick Sloane up from school today. I am a mom who likes to be in the thick of things so that is going to be a hard one for me every Friday. I, also, have to talk myself off the cliff a bit because Sloane didn't exactly drink as much as I would have wanted her to all week at school. I am so used to pushing Sloane to drink and monitoring her liquid intake that leaving it up to her is hard. I have been told that some children do not drink regularly...which I am sure is true, but Sloane never had this option. Since the moment we she was allowed to take liquids in her mouth, I have been shoving a straw in there with gentle as well as pointed reminders for her to drink. On Monday, I am going to chat with Sloane's teachers about what I think the drinking schedule in preschool should be.....LOL
Sloane seems to like it. She has some stories that we are trying to sort thru and find truth in....LOL The imagination, at 3, is nuts!! Add that to the drama queen I am raising and some stuff is head shaking!!
Over in Laryngeal Cleft land, we have 11 days to go before we see Dr. Rahbar. I'm kind of getting excited as Sloane is still healthy...shhhhh don't jinx me!! My hubby suggested that we run Sloane around the office before we see the good doctor to make her wheeze some. The wheeze still pops up frequently. A very good suggestion in my opinion. Mammie and I are thinking of making Sloane do sprints around the waiting room...The wheeze, the progress and the big picture of our LC world are on the table for discussion.
3 years ago this week, we were gearing up to come home from the NICU with no idea what lay ahead of us in regards to Sloane's laryngeal cleft. There was never a sense of hurry, hurry, hurry in our home. It was slow and steady to see progress and with that we did!!!!!!!!!!!!
I am working on accepting the loss of control I have now. I had to hand over my keys to nonni so she could pick Sloane up from school today. I am a mom who likes to be in the thick of things so that is going to be a hard one for me every Friday. I, also, have to talk myself off the cliff a bit because Sloane didn't exactly drink as much as I would have wanted her to all week at school. I am so used to pushing Sloane to drink and monitoring her liquid intake that leaving it up to her is hard. I have been told that some children do not drink regularly...which I am sure is true, but Sloane never had this option. Since the moment we she was allowed to take liquids in her mouth, I have been shoving a straw in there with gentle as well as pointed reminders for her to drink. On Monday, I am going to chat with Sloane's teachers about what I think the drinking schedule in preschool should be.....LOL
Sloane seems to like it. She has some stories that we are trying to sort thru and find truth in....LOL The imagination, at 3, is nuts!! Add that to the drama queen I am raising and some stuff is head shaking!!
Over in Laryngeal Cleft land, we have 11 days to go before we see Dr. Rahbar. I'm kind of getting excited as Sloane is still healthy...shhhhh don't jinx me!! My hubby suggested that we run Sloane around the office before we see the good doctor to make her wheeze some. The wheeze still pops up frequently. A very good suggestion in my opinion. Mammie and I are thinking of making Sloane do sprints around the waiting room...The wheeze, the progress and the big picture of our LC world are on the table for discussion.
3 years ago this week, we were gearing up to come home from the NICU with no idea what lay ahead of us in regards to Sloane's laryngeal cleft. There was never a sense of hurry, hurry, hurry in our home. It was slow and steady to see progress and with that we did!!!!!!!!!!!!
Tuesday, September 3, 2013
One Day Down
We basically had a photo shoot this morning. I took a ton of pictures and sent them out to everyone I could! Ti-ti came before her Tiger Woods performance to see Sloane off and take some of her own pictures. She was not without tears whe we left Sloane at school. I did not cry like a baby today but I did get teary as well as reflective. Shocking...I know!!!! Sloane walked in to school without any hesitation and as I left said "bye, bye" to me. Basically, she confirmed what I have been yapping about...Sloane was ready to fly the coup. It was nice to leave her today without having an obligation. Made it much more stress-free. Tomorrow may be a different story.
I packed Sloane the lunch of champions and she ate it ALL. She told me that she told her teacher "my belly says I'm hungry, can we have lunch?" So now, I have something to hold on to....Sloane has my appetite. :) in addition to my personality. Ha!
I did head to the college today to get the lay of the land. It helped me relax and also made a nervous nelly. Tomorrow, I'm spreading my wings. Hope it goes as well as it did for Sloane today. One thing is for sure, I don't think I'll be coming saying my teachers hit me!!!
Monday, September 2, 2013
Spread Your WIngs
Tomorrow is Sloane's first day at preschool! We are very excited here! I will say that I am a bit in shock that Sloane is old enough to go to preschool. The changes and growth that have happened in the last year is almost unbelievable.
We had Open House last week got to get our feet wet a bit with the idea of school. It was went off without a hitch, although I will honestly say that Sloane was bossy while she was there!! I know that the teachers are equip to tweak that some , but it still concerned me. It didn't help that poppie told her today to be sure that she lets the teachers know that... she is in charge!!! I screamed Dad!! across the room at him but it was too late Sloane was sing songing...I'm in charge all over the living room within 10 seconds. Tonight before bed I reminded her that the teacher is in charge in hopes that I would erase her grandfather's advice! LOL
I had written all over the in-take forms that Sloane had a laryngeal cleft and described it in all the lay-man terms I could so it seemed perfectly acceptable to ask the director if all Sloane's teachers had read about her LC on the forms. She said they hadn't yet but would be over the weekend. Not what I was hoping for...I wished they had read them, researched a LC and well versed themselves in what aspiration looks like.... :) Tomorrow i'll be happy to ask to give the 2 of them a quiz!! Just joking.
This is a nuts statement, but here it goes.....I am kind of worried about packing Sloane's lunch tomorrow. This, for some reason, is a bigger deal to me than sending her to school. I am sure it has something to do with the fact that I have controlled all of Sloane's eating habits for 3 years and do not want to relinquish that!! I am not even sure what you put in the lunch bag.....
In my world, I have been stuck in syllabus hell for over a week now. I can not believe how hard it is to write one! In the elementary land, we write daily lesson plans and objectives. Never once can I recalling laying out an entire semester on paper. I made some excellent progress and thought it looked good until my hubby killed the dream and had me tweak it so it was more professional!! Apparently, my font choice was more 4th grade-ish than college like.
I teach my first class as a professor....LMAO....on Wednesday. It should be interesting!! While Sloane heads to preschool tomorrow, I am heading to the college to get a lay of the land. I used to make fun of older people who would do a trail run of a drive to a new location or acquaint themselves with a building before a meeting. Well, it seems, I am an older person. I am walking the halls tomorrow to find my classroom for Wednesday morning. I want to be prepared!!!
Now, I know you are all wondering if I am going to cry tomorrow when I drop Sloane off at her first day of preschool. I am sure I will. I have been emotional all day and not for the reason you all are thinking. We went food shopping today and while I pushed Sloane around in a carriage, I saw a sight that broke my heart. A mom looking just like me letting her 2 year old in complete tutu and ballet shoe attire push her carriage. It was precious and heart breaking as the little girl had cancer. I wanted to cry at the sight but instead my daughter reminded me about life.....she said "momma, look at the little girl. she is strong pushing the carriage in her tutu." And I thought.....Yes, Sloane she is strong.
Tomorrow, there will be tears of happiness. I spent years wondering if Sloane would go to school with a feeding tube or unable to drink like her peers.
I will cry tomorrow:
because Sloane 's feeding tube is long gone,
because her sippy cup is filled with liquid in its natural form,
because my daughter has overcame the thick of her laryngeal cleft,
because Sloane will be as normal as the other children she is playing with,
because my child is spreading her wings...........
We had Open House last week got to get our feet wet a bit with the idea of school. It was went off without a hitch, although I will honestly say that Sloane was bossy while she was there!! I know that the teachers are equip to tweak that some , but it still concerned me. It didn't help that poppie told her today to be sure that she lets the teachers know that... she is in charge!!! I screamed Dad!! across the room at him but it was too late Sloane was sing songing...I'm in charge all over the living room within 10 seconds. Tonight before bed I reminded her that the teacher is in charge in hopes that I would erase her grandfather's advice! LOL
I had written all over the in-take forms that Sloane had a laryngeal cleft and described it in all the lay-man terms I could so it seemed perfectly acceptable to ask the director if all Sloane's teachers had read about her LC on the forms. She said they hadn't yet but would be over the weekend. Not what I was hoping for...I wished they had read them, researched a LC and well versed themselves in what aspiration looks like.... :) Tomorrow i'll be happy to ask to give the 2 of them a quiz!! Just joking.
This is a nuts statement, but here it goes.....I am kind of worried about packing Sloane's lunch tomorrow. This, for some reason, is a bigger deal to me than sending her to school. I am sure it has something to do with the fact that I have controlled all of Sloane's eating habits for 3 years and do not want to relinquish that!! I am not even sure what you put in the lunch bag.....
In my world, I have been stuck in syllabus hell for over a week now. I can not believe how hard it is to write one! In the elementary land, we write daily lesson plans and objectives. Never once can I recalling laying out an entire semester on paper. I made some excellent progress and thought it looked good until my hubby killed the dream and had me tweak it so it was more professional!! Apparently, my font choice was more 4th grade-ish than college like.
I teach my first class as a professor....LMAO....on Wednesday. It should be interesting!! While Sloane heads to preschool tomorrow, I am heading to the college to get a lay of the land. I used to make fun of older people who would do a trail run of a drive to a new location or acquaint themselves with a building before a meeting. Well, it seems, I am an older person. I am walking the halls tomorrow to find my classroom for Wednesday morning. I want to be prepared!!!
Now, I know you are all wondering if I am going to cry tomorrow when I drop Sloane off at her first day of preschool. I am sure I will. I have been emotional all day and not for the reason you all are thinking. We went food shopping today and while I pushed Sloane around in a carriage, I saw a sight that broke my heart. A mom looking just like me letting her 2 year old in complete tutu and ballet shoe attire push her carriage. It was precious and heart breaking as the little girl had cancer. I wanted to cry at the sight but instead my daughter reminded me about life.....she said "momma, look at the little girl. she is strong pushing the carriage in her tutu." And I thought.....Yes, Sloane she is strong.
Tomorrow, there will be tears of happiness. I spent years wondering if Sloane would go to school with a feeding tube or unable to drink like her peers.
I will cry tomorrow:
because Sloane 's feeding tube is long gone,
because her sippy cup is filled with liquid in its natural form,
because my daughter has overcame the thick of her laryngeal cleft,
because Sloane will be as normal as the other children she is playing with,
because my child is spreading her wings...........
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