We had a postoperative followup with both of her surgeons and the audiology clinic. As always, she enjoyed riding the elevators all over the hospital. She did get very quiet when seeing the cleft palate surgeon because I do think she remembered him and what he meant (pain) to her. After we just talked and he let her slide down the dentist chair instead of sitting in it! He peaked in her mouth with the mirror while she sat with me and that was all he needed. He told me he was extremely pleased with how it looks. The palate is raising up like it should (I never thought of it as doing that, but I look in there almost everyday), and the scars are looking like they should and no stretching or pulling. He was also happy to hear her making so much noise and asked about her speech progress as a whole. We also talked about her nasal regurgitation. I told him how it only comes out of one nostril now and only when it is something more liquidy. He explained that her swallowing and chewing will take a long time to change as she was so used to holding her tongue one way to help her swallow and she is probably still doing it. He is confident it will change and remedy the regurgitation.
Next we headed off to the ENT Clinic and met with the surgeon who put in her tubes. She didn't really care about his presence because he never looked in her mouth! The tubes were perfect and they had no concerns. We will see them again in 6 months and then they might even be able to come out! Then she can have bubble baths again because the soap won't cling to the plastic tubes and cause ear aches from clogging up as it dries!
Lastly, we had a hearing check that was finally successful. I laughed when the ENT Clinic told me her files from the other office we have tried to get her hearing checked said she wasn't cooperative. The kid normally sits on my lap and makes no sound. The first time she cried because it turned out she had a slight ear infection. At the followup she did't make a peep but they didn't have adapters that were small enough to fit in her ears. She would sit there and as the test was going on the tube would slowly work its way out and fall in her lap. The third attempt was the same with the tubes not fitting. The woman even said to me that they didn't have tubes small enough to stay in her ears and then made a followup for a month later (I remember thinking, how are the tubes going to fit in a month if they don't fit now!?). I missed the fourth attempt and they never called to say I missed it or make a followup. It is the same office that I go to every 3 weeks for speech pathology but I'm starting to wonder if they actually scheduled that last attempt or if I imagined that phone call! Either way, this time she sat on my my lap perfectly and didn't flinch at the tubes being put in (ones that were small enough because they didn't budge once they were fit) and she passed with flying colours. The woman said the volume response is just below ideal but she thinks it is because her canals are so narrow because everything else was perfect. This was good to know to finally have a baseline for her hearing!
So, that was 6 months from the last visit. We will probably go to 12-month intervals after the next one. She is best case scenario for them all! (Us too!)
Showing posts with label ENT. Show all posts
Showing posts with label ENT. Show all posts
Tuesday, September 30, 2014
Friday, January 31, 2014
Recovery
The first few days home have made a huge difference, as expected. The first night was a little rough. We could tell she was still sore and she kept wiggling out of the sleeves of her pajamas, and therefore the arm braces. She let out this high pitched scream at one point and I know she must have hit the roof of her mouth with her fingers! I ran in and picked her up and started looking for the braces. I was moving the crib, all of her toys, everything it seemed, and could not find one of them. I started singing for "Daaaaddy, pleeeeease come he-elp!" and other similar phrases, but was not getting any back up. She is whimpering and I'm trying not to yell so I don't upset her more. I knew she needed pain medication and she needed the braces and some cuddling - can't do all three myself at the same time. I start singing louder and then just plain yelling and still no help. I finally walk to the side of our bed and just yell, "MIKE!" Well, that scared the crap out of him! He jumped up and I told him to run and get all the pain medications hahaha. It's good to know one of us was getting the sleep we both needed. After we dosed her up with all her medications, I snuggled with her in the spare room until she fell asleep. She slept for four hours after that. She needed it!
The following morning she played as usual, but just quieter. She isn't doing her squeals and yells like she did before. She gets tired quickly and wants to be picked up a lot, but as long as she isn't laying down she doesn't need the arm braces. It is only when she is sleeping that she wants her hands in her mouth. She is drinking and eating and has even overcome the constipation from all the anesthesia and morphine. This kid is kicking her surgery's ass! When she gets sleepy or if she gets worked up because she hurts her mouth when eating, we give her the computer to watch so she calms down fast and gets distracted from the pain. She has gone down for her naps like normal and has even started her usual night time routine of chattering away to herself for hours!
Last night, her arm braces stayed on - we put them on under the onesie - and she only woke up twice but was able to go back down in her crib after being settled. One time was because she had pooped and not even because of mouth pain. She ate so well this morning and Skyped with her gramma and was her flirty self, just a bit quieter. She even started doing her Grover impressions again but they just sound more muted haha! Let's hope the next few nights go this well too. If she continues to heal this well, we might not need the braces on her arms as long as they say! Yeah!
I also want to say, 'thank you,' again to all of the well-wishes and good thoughts from everyone following our journey. More and more come out of the woodwork each day and I love knowing my girl has so much support! xoxo
The following morning she played as usual, but just quieter. She isn't doing her squeals and yells like she did before. She gets tired quickly and wants to be picked up a lot, but as long as she isn't laying down she doesn't need the arm braces. It is only when she is sleeping that she wants her hands in her mouth. She is drinking and eating and has even overcome the constipation from all the anesthesia and morphine. This kid is kicking her surgery's ass! When she gets sleepy or if she gets worked up because she hurts her mouth when eating, we give her the computer to watch so she calms down fast and gets distracted from the pain. She has gone down for her naps like normal and has even started her usual night time routine of chattering away to herself for hours!
Last night, her arm braces stayed on - we put them on under the onesie - and she only woke up twice but was able to go back down in her crib after being settled. One time was because she had pooped and not even because of mouth pain. She ate so well this morning and Skyped with her gramma and was her flirty self, just a bit quieter. She even started doing her Grover impressions again but they just sound more muted haha! Let's hope the next few nights go this well too. If she continues to heal this well, we might not need the braces on her arms as long as they say! Yeah!
I also want to say, 'thank you,' again to all of the well-wishes and good thoughts from everyone following our journey. More and more come out of the woodwork each day and I love knowing my girl has so much support! xoxo
Wednesday, January 29, 2014
Primary Closure
What a whirlwind few days! Sunday night I packed up the bags, put her to bed early, drank a lot of wine so I could sleep, and then tried to wrap my mind around how her world was about to change...again! Of course I had moments where I fretted about losing her and over reacted about everything that could go wrong, but I woke up ready and calm on Monday morning.
Day 1
We got her to the pre-op room early, early (she was second surgery, only after a suture removal), and began our wait. She hadn't eaten and I had to keep saying no to her drink requests but she was in such good spirits. She was wonderful and happy and only a little hesitant when they took her away. We moved to the waiting room. My biggest concern was if there was going to be a reaction to the anesthesia - we would know about that right away. About 20 minutes later the ear surgeon comes out and tells us the tubes are in and they were starting the cleft - well, I guess the anesthesia was okay! When it hit the 2 hour mark I started to get antsy... the surgeon had estimated 1.5 - 2 hours. I had to remind myself that it was 2 hours starting AFTER the anesthesia and tubes. I resolved to sit patiently still. I looked up and the surgeon was walking out to us and said it had all gone well. He said her muscles were strong and moved well, which should help her speech development, and that everything closed over like he expected. They had to cut the tissue up into the hard pallet so that he could stretch it enough but he had said that might have had to happen too. He assured us again that it was all good, kept asking if we had any questions, and said they would call us in an hour or two when she was ready to be taken to her room. Mike and I heaved a big sigh and finally felt safe to go eat lunch! Almost as soon as we walked back into the waiting room (30 minutes tops) the surgeon came back and said he had just checked on her and they would be calling us soon! He said she was reaching for her mouth so they had to put the braces on her arms, but we expected that since she sucks on her fingers. I was surprised that they were calling us now. The phone rang and we went back to see her in recovery. She was hyperventilating and clearly very upset. The nurse said she thought we would calm her down better than anything else. She saw me and said "hiii" like she does from her crib every morning, and then she started wailing - it was a strange, stuffy-sounding wail, but it broke my heart. The nurse told me to sit and she handed her to me and I just began singing and talking. She stopped crying and just did the big, racking sighs. She eventually drifted off and Mike and I sat there holding and petting her for over an hour. She was attached to IV fluid and a morphine infusion and was swollen and slightly bruised around the mouth. My poor baby.
At around 2:30pm, the nurse came and took us to our room and we moved her to a crib. She looked at Mike and asked, 'up?' in that same stuffy voice but that made me feel good that she is still in there and not traumatized. She slept and we waited for her to wake up again. She would wake up and be upset that she couldn't touch her hair or wipe her eyes and the tubes clearly bothered her. She would reach for us and we did our best to console her. I even climbed into the crib for 4 hours and held her. When she woke up again, she asked for something to drink! Good sign since she was on IV fluid and finally feeling thirsty! She tolerated a little water and then Mike took her and held her until the morning.
Day 2
The resident surgeon came in with his entourage and checked her mouth. He said the wound looked dry and intact and that they would take her off the IV this morning. He also said our primary surgeon would be in later. Once the IV was out she ate a LOT compared to all of our expectations! Another good sign! Then the diapers started needing to be changed. Yeah to fluid passing through her no problem. She was still receiving morphine every 4 hours with her acetaminophen but being off the infusion made her so much more herself. She did get really fussy just after lunch but we could tell it was because she was tired and angry that things felt different. She didn't seem to have problems swallowing food or water though! It was the new sensation of suction that was hurting her. She kept sucking her tongue to the new roof of her mouth and causing it to hurt! After her much needed nap she asked for Elmo (which we had packed) and wanted to go for walks. We went to the activity room and the play room, where the clown and her entertained each other, and she was so much herself that it felt amazing.
Now, I say she was herself personality and spirit, but there are things that are obviously different. The first big thing, which we never had even considered, is that the tone of her voice is different! She is even higher pitched than before. She is nasally, more from the blood and swelling, but there is a definite 'Minnie Mouse' quality that was not there before! She already had such a girly sing-song voice that it cracks me up to hear her now. She also snores now, which I had never heard before. It makes sense if you consider that they do surgery to make the soft palate smaller to reduce snoring and she didn't even have one before! hahaha! It is also refreshing to not see food come out her nose right after eating - although the blood right now is not so fun. It keeps scabbing over so she can't breathe! (The bath when we got home cleaned a lot of that though!)
At the end of this day she went to sleep in the crib by herself. She was fussy because she knew we were right there but she did eventually fall asleep after spending the day with limited pain medication. Success!
Day 3
After a visit from the resident and his students, we were told we were clear to leave today if we felt comfortable with that. He was happy with what he was seeing and hearing of her progress. The primary surgeon came in after that and said very much the same thing. I told him that we wanted to try her without the morphine this morning just to see if she could tolerate the pain, and then we would be comfortable taking her home. She had a good morning eating and reading books. She went about 6 hours without morphine and then she through another fit (again, I think it was because she was woken up every four hours so she never really got a good sleep) and eventually I think it was hurting her in her throat and mouth because she was crying so much. We called for the morphine to help her sleep. The nurse brought the magic and she fell asleep not long after and woke again in good spirits. The surgeon came in while she slept and I said we were ready because I think being in her own home will do her better and he agreed wholeheartedly. He said that all they were doing was pain control and we can do that at home as long as we felt okay with that. He was still very assuring that everything was going well and made sure all of our questions were answered. He wants to see us in 3 weeks for followup. When she woke up, we ate lunch, packed, and were officially discharged. She was quite dopey in the car but perked up when we got home. She ate a small dinner, played a whole lot, and started to crash early. We gave her a bath, which seemed to make her happy, and gave the ears a chance to be 'cleaned.' I use quotations because the amount of scabbing in there doesn't allow for us to really go in and clean and know we won't hurt anything, so we just let her lay underwater and then I removed what scabs I could from the outer opening. Poor kid. So full of scabs. Anyway, she is at home now and asleep in her crib. She has only had two doses of morphine today and will hopefully have a good sleep - her first in three days. Hopefully, Mike and I will too!
Kid is an incredible survivor. She proves it again by blowing all my worries out the window for the newest giant upset in her life!
Day 1
We got her to the pre-op room early, early (she was second surgery, only after a suture removal), and began our wait. She hadn't eaten and I had to keep saying no to her drink requests but she was in such good spirits. She was wonderful and happy and only a little hesitant when they took her away. We moved to the waiting room. My biggest concern was if there was going to be a reaction to the anesthesia - we would know about that right away. About 20 minutes later the ear surgeon comes out and tells us the tubes are in and they were starting the cleft - well, I guess the anesthesia was okay! When it hit the 2 hour mark I started to get antsy... the surgeon had estimated 1.5 - 2 hours. I had to remind myself that it was 2 hours starting AFTER the anesthesia and tubes. I resolved to sit patiently still. I looked up and the surgeon was walking out to us and said it had all gone well. He said her muscles were strong and moved well, which should help her speech development, and that everything closed over like he expected. They had to cut the tissue up into the hard pallet so that he could stretch it enough but he had said that might have had to happen too. He assured us again that it was all good, kept asking if we had any questions, and said they would call us in an hour or two when she was ready to be taken to her room. Mike and I heaved a big sigh and finally felt safe to go eat lunch! Almost as soon as we walked back into the waiting room (30 minutes tops) the surgeon came back and said he had just checked on her and they would be calling us soon! He said she was reaching for her mouth so they had to put the braces on her arms, but we expected that since she sucks on her fingers. I was surprised that they were calling us now. The phone rang and we went back to see her in recovery. She was hyperventilating and clearly very upset. The nurse said she thought we would calm her down better than anything else. She saw me and said "hiii" like she does from her crib every morning, and then she started wailing - it was a strange, stuffy-sounding wail, but it broke my heart. The nurse told me to sit and she handed her to me and I just began singing and talking. She stopped crying and just did the big, racking sighs. She eventually drifted off and Mike and I sat there holding and petting her for over an hour. She was attached to IV fluid and a morphine infusion and was swollen and slightly bruised around the mouth. My poor baby.
At around 2:30pm, the nurse came and took us to our room and we moved her to a crib. She looked at Mike and asked, 'up?' in that same stuffy voice but that made me feel good that she is still in there and not traumatized. She slept and we waited for her to wake up again. She would wake up and be upset that she couldn't touch her hair or wipe her eyes and the tubes clearly bothered her. She would reach for us and we did our best to console her. I even climbed into the crib for 4 hours and held her. When she woke up again, she asked for something to drink! Good sign since she was on IV fluid and finally feeling thirsty! She tolerated a little water and then Mike took her and held her until the morning.
Day 2
The resident surgeon came in with his entourage and checked her mouth. He said the wound looked dry and intact and that they would take her off the IV this morning. He also said our primary surgeon would be in later. Once the IV was out she ate a LOT compared to all of our expectations! Another good sign! Then the diapers started needing to be changed. Yeah to fluid passing through her no problem. She was still receiving morphine every 4 hours with her acetaminophen but being off the infusion made her so much more herself. She did get really fussy just after lunch but we could tell it was because she was tired and angry that things felt different. She didn't seem to have problems swallowing food or water though! It was the new sensation of suction that was hurting her. She kept sucking her tongue to the new roof of her mouth and causing it to hurt! After her much needed nap she asked for Elmo (which we had packed) and wanted to go for walks. We went to the activity room and the play room, where the clown and her entertained each other, and she was so much herself that it felt amazing.
Now, I say she was herself personality and spirit, but there are things that are obviously different. The first big thing, which we never had even considered, is that the tone of her voice is different! She is even higher pitched than before. She is nasally, more from the blood and swelling, but there is a definite 'Minnie Mouse' quality that was not there before! She already had such a girly sing-song voice that it cracks me up to hear her now. She also snores now, which I had never heard before. It makes sense if you consider that they do surgery to make the soft palate smaller to reduce snoring and she didn't even have one before! hahaha! It is also refreshing to not see food come out her nose right after eating - although the blood right now is not so fun. It keeps scabbing over so she can't breathe! (The bath when we got home cleaned a lot of that though!)
At the end of this day she went to sleep in the crib by herself. She was fussy because she knew we were right there but she did eventually fall asleep after spending the day with limited pain medication. Success!
Day 3
After a visit from the resident and his students, we were told we were clear to leave today if we felt comfortable with that. He was happy with what he was seeing and hearing of her progress. The primary surgeon came in after that and said very much the same thing. I told him that we wanted to try her without the morphine this morning just to see if she could tolerate the pain, and then we would be comfortable taking her home. She had a good morning eating and reading books. She went about 6 hours without morphine and then she through another fit (again, I think it was because she was woken up every four hours so she never really got a good sleep) and eventually I think it was hurting her in her throat and mouth because she was crying so much. We called for the morphine to help her sleep. The nurse brought the magic and she fell asleep not long after and woke again in good spirits. The surgeon came in while she slept and I said we were ready because I think being in her own home will do her better and he agreed wholeheartedly. He said that all they were doing was pain control and we can do that at home as long as we felt okay with that. He was still very assuring that everything was going well and made sure all of our questions were answered. He wants to see us in 3 weeks for followup. When she woke up, we ate lunch, packed, and were officially discharged. She was quite dopey in the car but perked up when we got home. She ate a small dinner, played a whole lot, and started to crash early. We gave her a bath, which seemed to make her happy, and gave the ears a chance to be 'cleaned.' I use quotations because the amount of scabbing in there doesn't allow for us to really go in and clean and know we won't hurt anything, so we just let her lay underwater and then I removed what scabs I could from the outer opening. Poor kid. So full of scabs. Anyway, she is at home now and asleep in her crib. She has only had two doses of morphine today and will hopefully have a good sleep - her first in three days. Hopefully, Mike and I will too!
Kid is an incredible survivor. She proves it again by blowing all my worries out the window for the newest giant upset in her life!
Thursday, January 23, 2014
A Whole Lot of Anxiousness (3 weeks of drafts)
Jan. 9th: We had our social worker visit today and it went swimmingly, or course. She was a little shy at first but then D was able to see her be silly in a comfortable environment. The visit was so we can report on Dania's physical, social, and emotional growth. We had to report on our ENT visits and update them with the date of the surgery.
NOTE: Now, I did not post anything too far in advance of the surgery just because (like not buying clothes before she was ours) I didn't want to jinx anything. I have been saving my drafts with all my fears and anxiety and EVERYTHING that has to do with the operation.
We also got the phone call about the surgery date today, just after I said to Mike, "well, they haven't called and wouldn't 2 weeks before, right? So, it must be next month." WRONG! Apparently this woman did not have our right phone number - which has been properly attached to Dania's health card since September as I have confirmed it at every one of her appointments... Whatever, we just need to wait for the package in the mail and spend a whole day in pre-op. It is scheduled. I was instantly nervous.
Jan. 16th: We received the pre-op package today. It contains hospital instructions as to parking, staying for a few nights, and procedure on the day of the operation. We also have our schedule for the pre-op day on the 23rd. It will be a loooooong day; they estimate 8 - 3:30. Guh. No nap that day - she will be a pill for the last appointment for sure! Poor kid. More needles, x-rays, and being taken to 3 different offices where none of her toys or anything familiar will be. I have been getting a slowly growing pit in my stomach. I know the whole procedure will be harder on Mike and me than it will on Dania. I am scared for her frustrations at having her arms braced. I am already sad for her because, as we all know, when something is different in your mouth you constantly poke it with your tongue and it is going to hurt. It will be different for her to eat, talk, and BREATHE! Our basic human instinct of breathing is going to feel so foreign and possibly scary because her nose and mouth won't feel like they are taking in as much air! I am also preparing for the after care and hoping that no one will come visiting until she is comfortable again. It is hard to not visit someone so precious when she is hurting, but we really will need our space at the beginning.
Jan. 23rd: Today was preop day. First of all, I have to say that she was an amazing trooper and I cannot believe she wasn't melting down after 7 hours when we got to our last appointment. We woke her before 7 am and left the pediatrician's office at 3pm. GUH! Our first appointment was in the oral maxillofacial clinic. We signed the consent forms, went over her history and had some pictures taken of her cleft.
Then we went to the second building to meet the nurse that will be there for her on Monday. He was so nice. We got the tour of day surgery and the low down about where we will be staying after the surgery. We were told how there should be a liaison nurse going back and forth between the OR and the waiting room and were shown the phone that they call as soon as a surgery is finished. They expect anyone waiting to pick it up and pass along the news that the surgeon will be coming out to speak to so-and-so. We then wait until she wakes up and is stable before we can see her. We will probably get there at 7 am and get to see her around lunch, as long as everything goes as planned.
Then we went and got her blood work done (the only real tears of the day) and went to talk to the surgeon again. He was just as nice as I remember and thorough and seemed pleased to be able to help. He laughed when I asked about brushing her teeth after; I said I had not seen anything about it in all the literature we were given. He said it is because this is normally done before the teeth are present and laughed. He said it was a good question and addressed it right away. He went over pain control and antibiotics and how this is just the primary closure...it could always lead to more operations down the line as she heals and grows. It was a lot of the same but it was good to hear it all again.
We then had a lunch break where she charmed the waitress at Smitty's - still in a good mood. After lunch we went to the pediatrician and waited forever. All 3 of us looked tired at this point. We waited a good while just to have the pediatrician tell us this was actually an unnecessary visit really. Just what we want to hear as she is being robbed of her nap! She has a runny nose but her lungs are clear so the pediatrician cleared her and completed the required forms and sent us on our way. She said the anesthesiologist will make the final call Monday morning since he is the one putting her to sleep; sometimes he can be really picky about runny noses or the chance of cold. She asked how we thought she was attaching and adapting and I told her how Dania blows my mind with how well she is understanding us and handling everything. That was when she said, "well, that is really you. You should congratulate yourself because it is not always like this for orphans and if she is blooming so successfully it is because she watches you and imitates you." That felt amazing to be told we have modeled a good routine and showed her the right attention and affection. I mean, I know we are doing well and have a wonderful situation, but to have this seasoned professional say it made me want to cry... and I was tired.
She crashed almost as soon as we were on the road. What a good kid.
On an almost different note, our magazine interview was published and another local couple looked up this blog and contacted me. They brought their little girl home a month before us and had a cleft lip and pallet surgery last fall. Their girl is from a different city, about half way between Moscow and Ufa, but the timing and overlap between sources of information seems to be similar. We are going to meet up after Dania is heeled and ready for play-dates again.
Well, 4 more sleeps and it is go-time. We appreciate the love and well-wishes but respectfully request that there are no drop-ins and visits from anyone at the hospital and none after discharge until we say she is up to it. This is important as we don't know if this could cause any setback in her development and she is going to be pretty friggin' miserable. We don't show up and try to hug you when you are feeling gross, can't talk, spitting blood, and dopey... offer her the same respect even though she is tiny, please!
NOTE: Now, I did not post anything too far in advance of the surgery just because (like not buying clothes before she was ours) I didn't want to jinx anything. I have been saving my drafts with all my fears and anxiety and EVERYTHING that has to do with the operation.
We also got the phone call about the surgery date today, just after I said to Mike, "well, they haven't called and wouldn't 2 weeks before, right? So, it must be next month." WRONG! Apparently this woman did not have our right phone number - which has been properly attached to Dania's health card since September as I have confirmed it at every one of her appointments... Whatever, we just need to wait for the package in the mail and spend a whole day in pre-op. It is scheduled. I was instantly nervous.
Jan. 16th: We received the pre-op package today. It contains hospital instructions as to parking, staying for a few nights, and procedure on the day of the operation. We also have our schedule for the pre-op day on the 23rd. It will be a loooooong day; they estimate 8 - 3:30. Guh. No nap that day - she will be a pill for the last appointment for sure! Poor kid. More needles, x-rays, and being taken to 3 different offices where none of her toys or anything familiar will be. I have been getting a slowly growing pit in my stomach. I know the whole procedure will be harder on Mike and me than it will on Dania. I am scared for her frustrations at having her arms braced. I am already sad for her because, as we all know, when something is different in your mouth you constantly poke it with your tongue and it is going to hurt. It will be different for her to eat, talk, and BREATHE! Our basic human instinct of breathing is going to feel so foreign and possibly scary because her nose and mouth won't feel like they are taking in as much air! I am also preparing for the after care and hoping that no one will come visiting until she is comfortable again. It is hard to not visit someone so precious when she is hurting, but we really will need our space at the beginning.
Jan. 23rd: Today was preop day. First of all, I have to say that she was an amazing trooper and I cannot believe she wasn't melting down after 7 hours when we got to our last appointment. We woke her before 7 am and left the pediatrician's office at 3pm. GUH! Our first appointment was in the oral maxillofacial clinic. We signed the consent forms, went over her history and had some pictures taken of her cleft.
Then we went to the second building to meet the nurse that will be there for her on Monday. He was so nice. We got the tour of day surgery and the low down about where we will be staying after the surgery. We were told how there should be a liaison nurse going back and forth between the OR and the waiting room and were shown the phone that they call as soon as a surgery is finished. They expect anyone waiting to pick it up and pass along the news that the surgeon will be coming out to speak to so-and-so. We then wait until she wakes up and is stable before we can see her. We will probably get there at 7 am and get to see her around lunch, as long as everything goes as planned.
Then we went and got her blood work done (the only real tears of the day) and went to talk to the surgeon again. He was just as nice as I remember and thorough and seemed pleased to be able to help. He laughed when I asked about brushing her teeth after; I said I had not seen anything about it in all the literature we were given. He said it is because this is normally done before the teeth are present and laughed. He said it was a good question and addressed it right away. He went over pain control and antibiotics and how this is just the primary closure...it could always lead to more operations down the line as she heals and grows. It was a lot of the same but it was good to hear it all again.
We then had a lunch break where she charmed the waitress at Smitty's - still in a good mood. After lunch we went to the pediatrician and waited forever. All 3 of us looked tired at this point. We waited a good while just to have the pediatrician tell us this was actually an unnecessary visit really. Just what we want to hear as she is being robbed of her nap! She has a runny nose but her lungs are clear so the pediatrician cleared her and completed the required forms and sent us on our way. She said the anesthesiologist will make the final call Monday morning since he is the one putting her to sleep; sometimes he can be really picky about runny noses or the chance of cold. She asked how we thought she was attaching and adapting and I told her how Dania blows my mind with how well she is understanding us and handling everything. That was when she said, "well, that is really you. You should congratulate yourself because it is not always like this for orphans and if she is blooming so successfully it is because she watches you and imitates you." That felt amazing to be told we have modeled a good routine and showed her the right attention and affection. I mean, I know we are doing well and have a wonderful situation, but to have this seasoned professional say it made me want to cry... and I was tired.
She crashed almost as soon as we were on the road. What a good kid.
On an almost different note, our magazine interview was published and another local couple looked up this blog and contacted me. They brought their little girl home a month before us and had a cleft lip and pallet surgery last fall. Their girl is from a different city, about half way between Moscow and Ufa, but the timing and overlap between sources of information seems to be similar. We are going to meet up after Dania is heeled and ready for play-dates again.
Well, 4 more sleeps and it is go-time. We appreciate the love and well-wishes but respectfully request that there are no drop-ins and visits from anyone at the hospital and none after discharge until we say she is up to it. This is important as we don't know if this could cause any setback in her development and she is going to be pretty friggin' miserable. We don't show up and try to hug you when you are feeling gross, can't talk, spitting blood, and dopey... offer her the same respect even though she is tiny, please!
Friday, December 13, 2013
All of the Appointments!
It has been a crazy busy time right now. First of all, we had her hearing tested, which was inconclusive due to the amount of fluid in her ears. Then we went to the family doctor to see if she had an ear infection. Also inconclusive due to the amount of wax, nonocclusive though. She did burst into tears upon seeing her doctor who, up to this point, has only given her needles... sorry kid! A week later, we return to the doctor for her flu shot! She got over it much quicker this time.
We also received her permanent resident card finally! Yeah!!!! Now, at any time before she is 18, we can apply for her citizenship!
We also had first hair cut, first snow fall, visit from Gramma Mary, and many other antics!
Then we did the big visit to the cleft palate clinic at the children's hospital here. We met some really nice parents of kids who have been attending the clinics for longer than us and have assured us that this really is the best clinic. They had to travel to other provinces for a few surgeries and were grateful that this hospital was their home base for everything. The team of employees we met were very, very nice and informative. It was a heck of a lot of information thrown at us in a few hours (still much longer than I had anticipated and Dania did wonderfully being trucked around from office to office and only getting cranky at the very end!). The cleft palate coordinator and head nurse met us first and went over standard protocol of who we would meet and who might be in our future. We didn't need to meet with their speech pathologist or pediatrician because we had prior appointments with them outside the clinic and nothing has changed. That probably saved us 2 hours of time! They talked about preparation and recovery procedures. A lot of prep had to do with weening kids off of bottles, soothers, sucky things that can pop the incisions - we are ahead of the game there! Then the recovery had to do with the possibility of bracing the arms so the kids can't get their fingers at the incisions, how to eat, and how to clean and care for the wounds properly. Then we were sent to the ear surgeon and met with him and his nurse. They looked in her ear, confirmed the presence of fluid still, and said that she probably always has a build up of it because it cannot drain properly. He showed us the tubes and how they would be inserted during the main operation. They will stay in for a year and we will reevaluate at that time, and after hearing testing post operation, if he needs to intervene further. There was a lot of post tube care that seems different from when I had tubes, but nothing drastic. She didn't mind him poking around in her ears and was very good. Overall, the big question of whether or not she has ever heard us correctly (due to constantly present fluid) has been raised. We may sound a whole lot clearer post surgery ie. M and B or G and K not sounding the same.
We then had to go back to the shared surgery section and be directed to the oral maxillofacial surgeon. He and his resident were so nice and gentle. She was cranky at this point, hungry and thirsty too, and she has never liked people poking in her mouth - I assume it is because she has always had that! My nose started gushing blood due to dryness and I got over a sink only to discover the tap didn't work. Mike had to find someone to show them so it could get cleaned up... well, that resulted in me being heavily questioned and I kept insisting it was just dry nose and I only wanted to ensure the blood got cleaned up! Afterward, we started playing a game with Dania. The crush-up-tissue-and-throw-it-out game while we waited and waited. When the surgeons came in it was actually pretty quick. They both looked in her mouth and she semi-cooperated. She didn't bit the mirror in half, at least! The main surgeon then drew up some diagrams for us and I now have an even better understanding of what will happen. He says he can do it all in one surgery since her jaw isn't too wide and he wants to get it done before she is 2. She turns two in two months and a week! I asked if this could happen in January. He seemed to imply that he just had plans change with a different client so there is a distinct possibility that that could happen (next month! holy smokes!) but if not, this winter for sure. Wow! Now I'm nervous! The procedure will be: we come in the day before for prep, go home and come in first thing the next morning with her having fasted. The actual surgery is 1.5-2 hours and, if all goes smoothly, 2 days in recovery. The first day with strictly IV food, the next day and the next 3 weeks will be soft food only. We will stay with her in a private room and decide if we need the arm braces. They look to be fun fabric covered bamboo place mats that tie around the elbow so kids cannot bend the hand to the mouth but can still use their arms for arm-length play.
Now, we wait for a call, probably next week, with the proposed date!
Wow! All of that, my play going on (3 more shows to perform as of this moment!), my last two weeks of my course, AND Christmas!
I'm tired hahaha. Now, hopefully, you can understand why I had almost a month gap in between blog entries! Sorry and thanks to those of you who still follow! xoxo
We also received her permanent resident card finally! Yeah!!!! Now, at any time before she is 18, we can apply for her citizenship!
We also had first hair cut, first snow fall, visit from Gramma Mary, and many other antics!
Then we did the big visit to the cleft palate clinic at the children's hospital here. We met some really nice parents of kids who have been attending the clinics for longer than us and have assured us that this really is the best clinic. They had to travel to other provinces for a few surgeries and were grateful that this hospital was their home base for everything. The team of employees we met were very, very nice and informative. It was a heck of a lot of information thrown at us in a few hours (still much longer than I had anticipated and Dania did wonderfully being trucked around from office to office and only getting cranky at the very end!). The cleft palate coordinator and head nurse met us first and went over standard protocol of who we would meet and who might be in our future. We didn't need to meet with their speech pathologist or pediatrician because we had prior appointments with them outside the clinic and nothing has changed. That probably saved us 2 hours of time! They talked about preparation and recovery procedures. A lot of prep had to do with weening kids off of bottles, soothers, sucky things that can pop the incisions - we are ahead of the game there! Then the recovery had to do with the possibility of bracing the arms so the kids can't get their fingers at the incisions, how to eat, and how to clean and care for the wounds properly. Then we were sent to the ear surgeon and met with him and his nurse. They looked in her ear, confirmed the presence of fluid still, and said that she probably always has a build up of it because it cannot drain properly. He showed us the tubes and how they would be inserted during the main operation. They will stay in for a year and we will reevaluate at that time, and after hearing testing post operation, if he needs to intervene further. There was a lot of post tube care that seems different from when I had tubes, but nothing drastic. She didn't mind him poking around in her ears and was very good. Overall, the big question of whether or not she has ever heard us correctly (due to constantly present fluid) has been raised. We may sound a whole lot clearer post surgery ie. M and B or G and K not sounding the same.
We then had to go back to the shared surgery section and be directed to the oral maxillofacial surgeon. He and his resident were so nice and gentle. She was cranky at this point, hungry and thirsty too, and she has never liked people poking in her mouth - I assume it is because she has always had that! My nose started gushing blood due to dryness and I got over a sink only to discover the tap didn't work. Mike had to find someone to show them so it could get cleaned up... well, that resulted in me being heavily questioned and I kept insisting it was just dry nose and I only wanted to ensure the blood got cleaned up! Afterward, we started playing a game with Dania. The crush-up-tissue-and-throw-it-out game while we waited and waited. When the surgeons came in it was actually pretty quick. They both looked in her mouth and she semi-cooperated. She didn't bit the mirror in half, at least! The main surgeon then drew up some diagrams for us and I now have an even better understanding of what will happen. He says he can do it all in one surgery since her jaw isn't too wide and he wants to get it done before she is 2. She turns two in two months and a week! I asked if this could happen in January. He seemed to imply that he just had plans change with a different client so there is a distinct possibility that that could happen (next month! holy smokes!) but if not, this winter for sure. Wow! Now I'm nervous! The procedure will be: we come in the day before for prep, go home and come in first thing the next morning with her having fasted. The actual surgery is 1.5-2 hours and, if all goes smoothly, 2 days in recovery. The first day with strictly IV food, the next day and the next 3 weeks will be soft food only. We will stay with her in a private room and decide if we need the arm braces. They look to be fun fabric covered bamboo place mats that tie around the elbow so kids cannot bend the hand to the mouth but can still use their arms for arm-length play.
Now, we wait for a call, probably next week, with the proposed date!
Wow! All of that, my play going on (3 more shows to perform as of this moment!), my last two weeks of my course, AND Christmas!
I'm tired hahaha. Now, hopefully, you can understand why I had almost a month gap in between blog entries! Sorry and thanks to those of you who still follow! xoxo
Wednesday, November 20, 2013
Speech Pathologist
Today was the first of all the ear, nose, throat appointments. I loved her. She, E, was very informative and kind and, above all else, impressed! She really was impressed with Dania's stages of speech development considering she had only known Russian up until 3 months ago! She went over how cleft pallet kids are delayed in sounds or make other sounds for compensation but had expected Dania to be further behind because of the second language. She said for a child who stared English 3 months ago Dania was pretty much at par with most stages of typical speech development.
She did tests to see if she recognized her name, ie would stop her present activity and acknowledge the name prompt. She gave simple commands, put in box, give to Mama. Tested how much she could do without a physical gesture to prompt her, ie. saying hug without opening your arms. She gave her objects to see how she would interact with them and wanting her to use them in conjunction with each other even though they might not be a set of toys normally used together, ie. clapping them together, putting one inside the other. She then progressed farther to commands like 'throw the ball to mama,' which we haven't done with her. She also would show her two objects, or pictures of objects, and ask her to point to a specific one, which we have just started with animal pictures. I told E that Dania loves books and loves animals so E got a book and a bag of toy animals that correspond with the pictures. Well, Dania was RIGHT into that game! She asked about what sounds Dania makes and we explained all front of the mouth or back of the throat, with the exception of 'la la la,' and she was happy that she was bringing her tongue forward to make a sound. We then showed E how Dania recognized the parts of the body without us gesturing and she was impressed with that!
She gave us some suggestions for work at home, more work in front of a mirror to get her to use her lips more, we need to stop saying "can you" when we ask her to do something and make it more simple and direct, start giving her two objects and getting her to identify a particular one to hand to us, place objects out of reach for her to gesture to them and then we can say the object and try and get her to say it too - even if it is just a vowel sound, and always reinforce what we are doing with simple dialogue. She said she loves what we have been doing because clearly we are doing stuff right for her! That felt great! We just need to simplify and work on the front of the mouth more. She said that even once she has the pallet repaired, if she is using compensation sounds now she will most likely continue to use them. Basically, a cleft kid doesn't have the glottis at the back of the throat that cuts off the airway to make a difference between nasal sounds and non-nasal sounds. If she is using the back of her throat to simulate a sound she will continue to so we will need to follow with E even after the surgery.
She wants to see us again in about a month to see development, go over in more detail things we can do, and set us up in a cleft pallet workshop as well as an early language development workshop. She had gone over with us the physicality of her throat and nose and even said that cleft kids are often prone to ear infections because of fluid drainage issues so it is great we are going to get her ears and hearing looked at in detail next week. Also, if there is an issue with the inner ears, the cleft kid may not be hearing the sounds properly to mimic them!
We spent almost two hours going over different tests and strategies. It was awesome. She was laughing that I was all over the difference between speech and language and developmental stages and then I told her I learned a lot of that in teacher's college.
It was just such a good visit and I look forward to the next and the workshops!
She did tests to see if she recognized her name, ie would stop her present activity and acknowledge the name prompt. She gave simple commands, put in box, give to Mama. Tested how much she could do without a physical gesture to prompt her, ie. saying hug without opening your arms. She gave her objects to see how she would interact with them and wanting her to use them in conjunction with each other even though they might not be a set of toys normally used together, ie. clapping them together, putting one inside the other. She then progressed farther to commands like 'throw the ball to mama,' which we haven't done with her. She also would show her two objects, or pictures of objects, and ask her to point to a specific one, which we have just started with animal pictures. I told E that Dania loves books and loves animals so E got a book and a bag of toy animals that correspond with the pictures. Well, Dania was RIGHT into that game! She asked about what sounds Dania makes and we explained all front of the mouth or back of the throat, with the exception of 'la la la,' and she was happy that she was bringing her tongue forward to make a sound. We then showed E how Dania recognized the parts of the body without us gesturing and she was impressed with that!
She gave us some suggestions for work at home, more work in front of a mirror to get her to use her lips more, we need to stop saying "can you" when we ask her to do something and make it more simple and direct, start giving her two objects and getting her to identify a particular one to hand to us, place objects out of reach for her to gesture to them and then we can say the object and try and get her to say it too - even if it is just a vowel sound, and always reinforce what we are doing with simple dialogue. She said she loves what we have been doing because clearly we are doing stuff right for her! That felt great! We just need to simplify and work on the front of the mouth more. She said that even once she has the pallet repaired, if she is using compensation sounds now she will most likely continue to use them. Basically, a cleft kid doesn't have the glottis at the back of the throat that cuts off the airway to make a difference between nasal sounds and non-nasal sounds. If she is using the back of her throat to simulate a sound she will continue to so we will need to follow with E even after the surgery.
She wants to see us again in about a month to see development, go over in more detail things we can do, and set us up in a cleft pallet workshop as well as an early language development workshop. She had gone over with us the physicality of her throat and nose and even said that cleft kids are often prone to ear infections because of fluid drainage issues so it is great we are going to get her ears and hearing looked at in detail next week. Also, if there is an issue with the inner ears, the cleft kid may not be hearing the sounds properly to mimic them!
We spent almost two hours going over different tests and strategies. It was awesome. She was laughing that I was all over the difference between speech and language and developmental stages and then I told her I learned a lot of that in teacher's college.
It was just such a good visit and I look forward to the next and the workshops!
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