Good, good news! We visited Dr. N's office today, where he looked at her hip, looked in her mouth, and declared that she can eat and do whatever she likes. Yay! So, all the way up the stairs to the parking lot I heard, "Can I eat tortilla chips? Can I eat hibachi? Can I eat gum?" And into the car, "Can I play on the playground at recess? Can I go to gym? Can I eat Halloween candy? Can I eat the car?"
Um, no on the car, dear, but yes to the rest. Silly, silly girl.
And as we drive home, in the rain and high wind that caused tonight's Trick-or-Treating to be cancelled I hear, "Can I ride my bike when we get home?"
Showing posts with label cleft issues. Show all posts
Showing posts with label cleft issues. Show all posts
Thursday, October 31, 2013
Saturday, October 26, 2013
Kate's Bone Graft, Part 2
Warning: This information is largely for those who are looking for information on bone grafts in cleft kids, including myself since we will be doing this again in 4-5 years, but I won't remember any of this by then. All of it will be way to boring for most of you.
Kate went in for surgery early on October 3rd. Dr. N. had scheduled the bone graft to be done at a nearby hospital that we hadn't used before. Check-in was smooth, although we had to repeat the same information to the nurses several times because they both seemed to keep losing the information they just collected. The anesthesiologists were very nice, and one of them ended up holding Kate while she "went to sleep."
The surgery went very well, and Dr. N. was able to drill down into her right hip (iliac crest), remove some shavings, and then place them in her gumline to complete her upper jaw. It is actually much more complicated than that, but that is as much of it as I understand, so that is all you will get from me on that topic, other than to say no donor, cadaver, or synthetic bone was used. Dr. N. thought he would need to pull the left canine and molar (both baby teeth) so that he would have the space to repair the alveolar ridge, but thankfully he only had to pull the canine. That left him with enough room to work. The hole was triangle-shaped, and it had actually be growing in the last year. Before that it had shrunk it just a tiny hole.
The recovery room was difficult, but only because it is yucky coming off the anesthesia. That half-awake-where-am-I feeling isn't much fun. And about two minutes after waking up she asked when she could watch Teen Beach Movie (ok, it was longer than that, but not much).
Once we got upstairs, we got settled in and popped in a movie, someone came around and asked if Kate had enjoyed her lunch. I was confused by this question since Kate was on a clear liquid diet, having just had surgery on her mouth two hours before, but I said, "No." The well-meaning tech then proceeded to ask Kate if she would like her to order some chicken nuggets for her for lunch. Ummm, no. Clear liquid diet. She then apologized and had some broth sent up, which Kate didenjoy very much eat without complaining.
We spent the rest of the day in the bed watching as many Disney movies and TV shows that we could squeeze in. She was not interested in sleep. At all. She did so well eating and going to the bathroom, that by 5pm, Dr. N. said that she could go home in the morning as soon as we were ready, and she could eat soft foods that didn't require front teeth (pudding, ice cream, mashed potatoes, etc). Food services immediately brought her a sandwich. The tech was in the room when that happened, so this time nice tech lady sent them back with instructions to bring her more broth and some ice cream. I was just thankful I didn't have be rude again. I had already done enough of that, as you will see below.
There is no pediatric unit at this hospital, which means that some of the folks didn't know what to do with her. We had a day nurse that did not understand pediatric pain management. Usually, pediatric nurses come in and say, "We don't want her to be in any pain, so we will give the meds regularly until tomorrow morning, and then we will assess where we are and what she needs. You just focus on getting liquids in her." But this was not a pediatric nurse. I had to call her every single time meds were needed, and when she brought them it took forever. She also expected my six-year old daughter to rate her pain on a scale of 1-10. Puh-leaze. Just the week before, Will had tried to explain this concept to her. It wasn't going to happen. She said 5 or 6 every single time, whether she was fine or in tears. I asked why she couldn't just bring the meds on a schedule. Themean nurse said that Kate had to ask for them. As if a six-year old has the life experience to predict when her pain meds are going to wear off and when she might need more.
When the night nurse showed up, I asked her right off the bat what our pain management plan was. She said, "Well, the patient is supposed to ask for pain meds." I glared. She said, "Or I could go ahead and bring them in every four hours." Yes, that seems like an excellent idea. Why don't you do that?
And so the night went. We didn't get much sleep, but her pain was well-managed. Somewhere around 6am we all zonked out and were dead to the world until about 8:30. And while we slept the day nurse came back. I woke up to Kate beside me crying because she was more than an hour overdue for her dose. I buzzed for the nurse. No answer. I stomped down the hall, but she was nowhere. Finally the well-meaning tech comes in, takes one look at us, and offers to find another nurse to administer the medicine. When our nurse finally came, I asked to be discharged immediately. I knew I could do a better job administering meds at home than this lady could.
Overall our experience was fine, and there were even a couple of great folks we came across. (Kate even commented to me how the nice tech went above and beyond to make her comfortable.) However, I was thrilled to get out of there and back home.
For the rest of Friday and Saturday, Kate was in a bit of pain, and I kept her on a regular schedule with her medicines. She ate a lot of fried eggs and milk shakes, and she watched Teen Beach Movie. A lot. (She stopped counting at eleven.) Although she didn't have any swelling in her mouth on Thursday, there was considerable swelling on Friday and Saturday. By Sunday morning it had disappeared. I woke up and heard her sweet voice singing and then asking for food. I smiled, and she said, "I am feeling like myself again." YAY!
After that she continually got better. We made her walk laps around the inside of the house every day, and over the course of about ten days she gradually went from bent over and hobbling to standing up straight and walking without a limp. After a week, Dr. N. cleared her to eat soft meats cut up small, and anything she didn't have to tear at with her front teeth. Crunchy, hard foods are still off limits.
As to the success of the surgery, everything looks great. It is still too soon to tell if the bone is growing or if it has failed, but there no reason to think that there is a problem. Hopefully, the worst is over, and it is all down hill from here.
Last, lots of people have asked me two specific questions:
1. Is this Kate's last surgery? No, there will be at least one more to repair the hole in her right eardrum and to do a lip revision to address some of the muscle issues going on. Hopefully it will help with her speech. I can't say if there will be more in the future, since it will be up to her when she is older if she wants any more revisions done. And of course, this is assuming no p-flaps, grafts, or anything else needed.
2. Will Jack have this surgery done? Yes. Although his clefts in his alveolar ridge aren't visible without an x-ray, he does have bone missing on both sides of his upper jaw. In 4-5 years we will do this all over again with him, although probably with a different team of doctors. One of their doctors once said to me that you don't switch trains while they are in motion. In other words, stick with one team until the palate repairs are done. Because Kate's plastic surgeon had retired, we chose a different team for Jack. That team actually has two oral surgeons we can choose from. Now that Kate's palate repair is complete (fingers crossed), we will probably move her to that team as well, just to make our lives a little more simple. Dr. L will do Kate's lip revision, and probably Jack's bone grafts too.
Pre-op
Kate went in for surgery early on October 3rd. Dr. N. had scheduled the bone graft to be done at a nearby hospital that we hadn't used before. Check-in was smooth, although we had to repeat the same information to the nurses several times because they both seemed to keep losing the information they just collected. The anesthesiologists were very nice, and one of them ended up holding Kate while she "went to sleep."
The surgery went very well, and Dr. N. was able to drill down into her right hip (iliac crest), remove some shavings, and then place them in her gumline to complete her upper jaw. It is actually much more complicated than that, but that is as much of it as I understand, so that is all you will get from me on that topic, other than to say no donor, cadaver, or synthetic bone was used. Dr. N. thought he would need to pull the left canine and molar (both baby teeth) so that he would have the space to repair the alveolar ridge, but thankfully he only had to pull the canine. That left him with enough room to work. The hole was triangle-shaped, and it had actually be growing in the last year. Before that it had shrunk it just a tiny hole.
The recovery room was difficult, but only because it is yucky coming off the anesthesia. That half-awake-where-am-I feeling isn't much fun. And about two minutes after waking up she asked when she could watch Teen Beach Movie (ok, it was longer than that, but not much).
Once we got upstairs, we got settled in and popped in a movie, someone came around and asked if Kate had enjoyed her lunch. I was confused by this question since Kate was on a clear liquid diet, having just had surgery on her mouth two hours before, but I said, "No." The well-meaning tech then proceeded to ask Kate if she would like her to order some chicken nuggets for her for lunch. Ummm, no. Clear liquid diet. She then apologized and had some broth sent up, which Kate did
We spent the rest of the day in the bed watching as many Disney movies and TV shows that we could squeeze in. She was not interested in sleep. At all. She did so well eating and going to the bathroom, that by 5pm, Dr. N. said that she could go home in the morning as soon as we were ready, and she could eat soft foods that didn't require front teeth (pudding, ice cream, mashed potatoes, etc). Food services immediately brought her a sandwich. The tech was in the room when that happened, so this time nice tech lady sent them back with instructions to bring her more broth and some ice cream. I was just thankful I didn't have be rude again. I had already done enough of that, as you will see below.
Mmmm, ice cream and movies
There is no pediatric unit at this hospital, which means that some of the folks didn't know what to do with her. We had a day nurse that did not understand pediatric pain management. Usually, pediatric nurses come in and say, "We don't want her to be in any pain, so we will give the meds regularly until tomorrow morning, and then we will assess where we are and what she needs. You just focus on getting liquids in her." But this was not a pediatric nurse. I had to call her every single time meds were needed, and when she brought them it took forever. She also expected my six-year old daughter to rate her pain on a scale of 1-10. Puh-leaze. Just the week before, Will had tried to explain this concept to her. It wasn't going to happen. She said 5 or 6 every single time, whether she was fine or in tears. I asked why she couldn't just bring the meds on a schedule. The
When the night nurse showed up, I asked her right off the bat what our pain management plan was. She said, "Well, the patient is supposed to ask for pain meds." I glared. She said, "Or I could go ahead and bring them in every four hours." Yes, that seems like an excellent idea. Why don't you do that?
And so the night went. We didn't get much sleep, but her pain was well-managed. Somewhere around 6am we all zonked out and were dead to the world until about 8:30. And while we slept the day nurse came back. I woke up to Kate beside me crying because she was more than an hour overdue for her dose. I buzzed for the nurse. No answer. I stomped down the hall, but she was nowhere. Finally the well-meaning tech comes in, takes one look at us, and offers to find another nurse to administer the medicine. When our nurse finally came, I asked to be discharged immediately. I knew I could do a better job administering meds at home than this lady could.
Overall our experience was fine, and there were even a couple of great folks we came across. (Kate even commented to me how the nice tech went above and beyond to make her comfortable.) However, I was thrilled to get out of there and back home.
For the rest of Friday and Saturday, Kate was in a bit of pain, and I kept her on a regular schedule with her medicines. She ate a lot of fried eggs and milk shakes, and she watched Teen Beach Movie. A lot. (She stopped counting at eleven.) Although she didn't have any swelling in her mouth on Thursday, there was considerable swelling on Friday and Saturday. By Sunday morning it had disappeared. I woke up and heard her sweet voice singing and then asking for food. I smiled, and she said, "I am feeling like myself again." YAY!
After that she continually got better. We made her walk laps around the inside of the house every day, and over the course of about ten days she gradually went from bent over and hobbling to standing up straight and walking without a limp. After a week, Dr. N. cleared her to eat soft meats cut up small, and anything she didn't have to tear at with her front teeth. Crunchy, hard foods are still off limits.
As to the success of the surgery, everything looks great. It is still too soon to tell if the bone is growing or if it has failed, but there no reason to think that there is a problem. Hopefully, the worst is over, and it is all down hill from here.
Last, lots of people have asked me two specific questions:
1. Is this Kate's last surgery? No, there will be at least one more to repair the hole in her right eardrum and to do a lip revision to address some of the muscle issues going on. Hopefully it will help with her speech. I can't say if there will be more in the future, since it will be up to her when she is older if she wants any more revisions done. And of course, this is assuming no p-flaps, grafts, or anything else needed.
2. Will Jack have this surgery done? Yes. Although his clefts in his alveolar ridge aren't visible without an x-ray, he does have bone missing on both sides of his upper jaw. In 4-5 years we will do this all over again with him, although probably with a different team of doctors. One of their doctors once said to me that you don't switch trains while they are in motion. In other words, stick with one team until the palate repairs are done. Because Kate's plastic surgeon had retired, we chose a different team for Jack. That team actually has two oral surgeons we can choose from. Now that Kate's palate repair is complete (fingers crossed), we will probably move her to that team as well, just to make our lives a little more simple. Dr. L will do Kate's lip revision, and probably Jack's bone grafts too.
Thursday, October 24, 2013
Kate's Bone Graft, Part 1
Kate's bone graft really wasn't on our radar last year. It was something that the doctors said she would need when she was about eight, so although we knew it was out there in the future, we didn't spend too much time pondering it. However, that changed when we saw Dr. N. at the Commission back in November. He wanted to go ahead and get X-rays of her mouth, so that he could track the growth of her mouth and determine when the surgery would be. Dr. N. is an oral surgeon who has worked with Kate's (now retired) plastic surgeon for 30 years. I asked him once what the likelihood of a bone graft failure was, and he told me that he had one fail once. Once. OK, you get the job.
Kate is missing her left lateral incisor - aka, the tooth that doctors sometimes use to decide when to do this surgery. Because of this, there was a wider window of time to get it done. Dr. N. said that either the summer of 2013 or 2014 would be fine, or even later if we needed to wait for whatever reason. We went home that day thinking 2014 sounded fine with us. Or later.
Then in the spring a couple different things happened that caused us to start reconsidering. First, the central incisor started coming in at a weird angle. And when I say weird, I mean it was pointing straight out and the bottom edge was vertical and pressing on her lip. Thankfully it has now started to rotate itself down into a better position, but it still has a way to go, and it irritates her upper lip.
Second, the other three lateral incisors started to erupt, meaning that her jaw was close to the right stage of growth for the bone graft to happen now. This was surprising since Will still has one of his baby lateral incisors, and at the time this happened, he had two or three.
Third, one day at a visit to Jack's plastic surgeon, Dr. L. was making small talk with Kate and got this look on his face that meant he noticed something. He asked her to start making faces (lip puckers, etc.), and according to him, all of Kate's upper lip muscles aren't properly connected. That was news to us, since her (now retired) surgeon never mentioned it. So I started making appointments and asking questions. Within a very short amount of time we saw the other members of Kate's plastic surgery team (who thought there was no muscle issue but wanted to do some work to minimize the scar - I said no; they also said that they would work with either Dr. N for the bone graft, or their ENT for an ear drum repair, but not our ENT), an orthodontist (who said he would normally do a palate expansion on a child getting ready for a bone graft, but wasn't going to touch that front tooth with a ten foot pole because it could fall out if we start shifting things around), her ENT (yes, we can do her ear drum repair when we do a lip revision; no, we can't do an ear drum repair when we do a bone graft), and three different speech therapists (who all agreed with Dr. L., something was amiss with that front lip).
By this time it was May of 2013, and honestly it was too late for a summer 2013 bone graft, what with vacations and all (ours and Dr. N's). Plus, was had to make decisions about which surgeries to do and which ones could/should be combined. I consulted with Dr. L through all of this too, even though he has never seen Kate as a patient. I decided to wait until summer 2014 so that she would have time to heal, and I would have time to mull over the choices. There was no reason to rush.
As we considered, the decision was made to have Dr. N. do the bone graft, and then later, after she was healed we would have Dr. L do a major lip revision while Dr. M (ENT) do a ear drum repair at the same time. Three birds with two stones.
As summer rolled by, I became more and more thankful that I hadn't scheduled a bone graft. Talk about busy! We didn't slow down at all, and as per usual, we barely saw Tim except on vacation. Also as the summer rolled by, I realized that there was no way I could schedule a bone graft for next summer either. It wasn't going to be any better! I knew he was suggesting summer because it is when lots of people's lives slow down, but let's face it, we aren't "lots of people."
I called Dr. N's surgical coordinator in August to discuss the possibility of doing it over fall break instead. She suggested the Thursday before break, and then Kate would have eleven days to recover before school resumed. Mimi could come up and care for the boys, then they could be farmed out when we got home from the hospital on Friday.
And that is what we did.
(Stay tuned for Part 2.)
Kate is missing her left lateral incisor - aka, the tooth that doctors sometimes use to decide when to do this surgery. Because of this, there was a wider window of time to get it done. Dr. N. said that either the summer of 2013 or 2014 would be fine, or even later if we needed to wait for whatever reason. We went home that day thinking 2014 sounded fine with us. Or later.
Then in the spring a couple different things happened that caused us to start reconsidering. First, the central incisor started coming in at a weird angle. And when I say weird, I mean it was pointing straight out and the bottom edge was vertical and pressing on her lip. Thankfully it has now started to rotate itself down into a better position, but it still has a way to go, and it irritates her upper lip.
Second, the other three lateral incisors started to erupt, meaning that her jaw was close to the right stage of growth for the bone graft to happen now. This was surprising since Will still has one of his baby lateral incisors, and at the time this happened, he had two or three.
Third, one day at a visit to Jack's plastic surgeon, Dr. L. was making small talk with Kate and got this look on his face that meant he noticed something. He asked her to start making faces (lip puckers, etc.), and according to him, all of Kate's upper lip muscles aren't properly connected. That was news to us, since her (now retired) surgeon never mentioned it. So I started making appointments and asking questions. Within a very short amount of time we saw the other members of Kate's plastic surgery team (who thought there was no muscle issue but wanted to do some work to minimize the scar - I said no; they also said that they would work with either Dr. N for the bone graft, or their ENT for an ear drum repair, but not our ENT), an orthodontist (who said he would normally do a palate expansion on a child getting ready for a bone graft, but wasn't going to touch that front tooth with a ten foot pole because it could fall out if we start shifting things around), her ENT (yes, we can do her ear drum repair when we do a lip revision; no, we can't do an ear drum repair when we do a bone graft), and three different speech therapists (who all agreed with Dr. L., something was amiss with that front lip).
By this time it was May of 2013, and honestly it was too late for a summer 2013 bone graft, what with vacations and all (ours and Dr. N's). Plus, was had to make decisions about which surgeries to do and which ones could/should be combined. I consulted with Dr. L through all of this too, even though he has never seen Kate as a patient. I decided to wait until summer 2014 so that she would have time to heal, and I would have time to mull over the choices. There was no reason to rush.
As we considered, the decision was made to have Dr. N. do the bone graft, and then later, after she was healed we would have Dr. L do a major lip revision while Dr. M (ENT) do a ear drum repair at the same time. Three birds with two stones.
As summer rolled by, I became more and more thankful that I hadn't scheduled a bone graft. Talk about busy! We didn't slow down at all, and as per usual, we barely saw Tim except on vacation. Also as the summer rolled by, I realized that there was no way I could schedule a bone graft for next summer either. It wasn't going to be any better! I knew he was suggesting summer because it is when lots of people's lives slow down, but let's face it, we aren't "lots of people."
I called Dr. N's surgical coordinator in August to discuss the possibility of doing it over fall break instead. She suggested the Thursday before break, and then Kate would have eleven days to recover before school resumed. Mimi could come up and care for the boys, then they could be farmed out when we got home from the hospital on Friday.
And that is what we did.
(Stay tuned for Part 2.)
Thursday, January 3, 2013
Jack and the Hearing Saga
When we first saw Jack's file over a year ago, it was noted that he had severe/moderate hearing loss. At the time we had two thoughts concerning this. First, it was probably conductive loss related to his cleft palate. If so, a good set of tubes might go a long way in helping him hear. (As one of Kate's doctors told me once, it is hard to hear with tapioca pudding in your ears.) Second, even if the loss is permanent we have lots of resources to help a child with partial hearing loss.
So, we started the process and honestly did not give a lot more thought to his hearing loss. It was one of those We Will Cross That Bridge When We Come To It kinds of things.
Fast forward to last April when we met him. We had some indication that there might be loss. For example, he is really loud. No really. He is loud. Also, (unlike Kate, who also had moderate hearing loss) he had no connection with his Chinese name, even when spoken by people at his orphanage. Was it because he couldn't hear or was it that they just never called him by that name?
Within a few days though, we noticed he was easily turning his head towards all sorts of sounds, and he was responding to the name Jack. This confirmed - for us anyway - that his loss was moderate at worst, not severe.
Once home our regular audiologist (#1) confirmed this for us again through a series of tests. However, everyone and their mama thought we still needed to get a sedated ABR hearing test to further nail down the type and severity of the loss.
Remember all of the rigamaroll I went through to get the ABR? Blech.
So in August, after his tubes were placed but before Dr. L repaired his palate, an audiologist (#2) came in and performed an ABR. I was so confident that his hearing would come back with minor or no loss that I didn't give it a lot of thought.
Except that isn't what the report said. The audiologist (#2) (who I had never met before) told me that Jack had moderate/severe sensori-neural loss and that he needed hearing aids immediately. That he wasn't hearing well enough that he would ever learn to speak without aids. Honestly, it was a punch in the gut. I cried for quite a while before I felt ready to go back into the waiting room. In my head I knew that this was a possibility, and I thought I was prepared for it, but the reality was a lot more painful.
Tim and I together decided we weren't ready to share this news. Keep in mind that we were still dealing with the fact that our 2 year old was in surgery. And for my part, I knew that I needed to get to a point where I wouldn't cry every time it was mentioned. The last thing Jack (or I) needed was pity. We needed resources and strength. Jack would need the confidence to know that hearing aids would not slow him down or stop him from anything he wanted to accomplish in life. It had to be no big deal. And honestly I wasn't there yet.
We went in to see our regular audiologist (#1) a couple of weeks later. Immediately, she questioned these results. She questioned the type and severity, maintaining that Jack's loss was conductive and minimal, and she tested him again. Over the course of the next few months she repeated those tests more times than I could count. I carried the results to pediatricians and ENTS, looking for answers to these conflicting reports.
In the meantime, Jack was starting to talk. He said the word ball. Daddy. Wah (water). And one night I was putting him to bed. It was pitch black in the room, and we were whispering to each other. He would say, "Mama," and I would say, "Jack." Back and forth we went. And then I said, "Time to sleep, Jack." And he rolled over and went to sleep.
I know some of you are marveling that he listened to me, but I was marveling that he heard me! I whispered!
I went in to see audiologist #1 and told her, and she cried. I love that woman.
Then last month Dr. T, the international adoption doc, suggested we see her friend who is an audiologist (#3). I had been considering a third opinion from the place this woman works anyway, so I was game. They got us right in, and audiologist #3 did a series of tests and then says, "Jack has normal or near-normal hearing. He does not need aids." And I cried again. I asked, "How could this other, supposedly objective test have been so wrong?" And she explained to me how the instruments can sometimes get covered in the blood and other fluids present in a surgical situation, thereby making them inaccurate. It wasn't anyone's fault. It just happened.
And so here I am, considering all of this. I am extremely grateful that his hearing is fine, not only because I am a normal parent who wants their child to have normal hearing (even though I was perfectly willing and able to parent a child with hearing loss), but also because now we only have to have hearing checks a couple times a year. Which is really great, considering my recent complaints about frequent doctor appointments.
But through this process I have also thought a lot about what it would mean to have a child with something the rest of the world considers a disability. I have given a lot of thought to parents who want their child to not be seen as a deaf child, but a child who happens to be deaf. Do you see the distinction? They don't want the emphasis to be on the deafness, but rather on a child who has infinite possibilities for success in his life.
This is another post without a neat bow. I am thankful for Jack's hearing. I have twice been given the gift of a child whose hearing loss was restored. (And twice the gift of children who have no hearing loss but severe selective hearing loss, iykwim.) I guess what I am saying is that maybe when I hear a child has a diagnosis, I will think twice before saying, "I am sorry." Not that there isn't a time and place for I am sorry. There is. I just know that it wasn't something I wanted to hear. I did not want anyone pitying my son, who is one of the smartest kids I have ever met. (He is starting to recognize letters. He is 2 and has only heard the English language for the past 8 months, 4 of which his ears were full of tapioca pudding.) He is going to do amazing things, and it has nothing to do with how well he hears. Next time I will be more likely to look past whatever the child has, and see the child's potential. That is what is best for the child. And for his mom.
So, we started the process and honestly did not give a lot more thought to his hearing loss. It was one of those We Will Cross That Bridge When We Come To It kinds of things.
Fast forward to last April when we met him. We had some indication that there might be loss. For example, he is really loud. No really. He is loud. Also, (unlike Kate, who also had moderate hearing loss) he had no connection with his Chinese name, even when spoken by people at his orphanage. Was it because he couldn't hear or was it that they just never called him by that name?
Within a few days though, we noticed he was easily turning his head towards all sorts of sounds, and he was responding to the name Jack. This confirmed - for us anyway - that his loss was moderate at worst, not severe.
Once home our regular audiologist (#1) confirmed this for us again through a series of tests. However, everyone and their mama thought we still needed to get a sedated ABR hearing test to further nail down the type and severity of the loss.
Remember all of the rigamaroll I went through to get the ABR? Blech.
So in August, after his tubes were placed but before Dr. L repaired his palate, an audiologist (#2) came in and performed an ABR. I was so confident that his hearing would come back with minor or no loss that I didn't give it a lot of thought.
Except that isn't what the report said. The audiologist (#2) (who I had never met before) told me that Jack had moderate/severe sensori-neural loss and that he needed hearing aids immediately. That he wasn't hearing well enough that he would ever learn to speak without aids. Honestly, it was a punch in the gut. I cried for quite a while before I felt ready to go back into the waiting room. In my head I knew that this was a possibility, and I thought I was prepared for it, but the reality was a lot more painful.
Tim and I together decided we weren't ready to share this news. Keep in mind that we were still dealing with the fact that our 2 year old was in surgery. And for my part, I knew that I needed to get to a point where I wouldn't cry every time it was mentioned. The last thing Jack (or I) needed was pity. We needed resources and strength. Jack would need the confidence to know that hearing aids would not slow him down or stop him from anything he wanted to accomplish in life. It had to be no big deal. And honestly I wasn't there yet.
We went in to see our regular audiologist (#1) a couple of weeks later. Immediately, she questioned these results. She questioned the type and severity, maintaining that Jack's loss was conductive and minimal, and she tested him again. Over the course of the next few months she repeated those tests more times than I could count. I carried the results to pediatricians and ENTS, looking for answers to these conflicting reports.
In the meantime, Jack was starting to talk. He said the word ball. Daddy. Wah (water). And one night I was putting him to bed. It was pitch black in the room, and we were whispering to each other. He would say, "Mama," and I would say, "Jack." Back and forth we went. And then I said, "Time to sleep, Jack." And he rolled over and went to sleep.
I know some of you are marveling that he listened to me, but I was marveling that he heard me! I whispered!
I went in to see audiologist #1 and told her, and she cried. I love that woman.
Then last month Dr. T, the international adoption doc, suggested we see her friend who is an audiologist (#3). I had been considering a third opinion from the place this woman works anyway, so I was game. They got us right in, and audiologist #3 did a series of tests and then says, "Jack has normal or near-normal hearing. He does not need aids." And I cried again. I asked, "How could this other, supposedly objective test have been so wrong?" And she explained to me how the instruments can sometimes get covered in the blood and other fluids present in a surgical situation, thereby making them inaccurate. It wasn't anyone's fault. It just happened.
And so here I am, considering all of this. I am extremely grateful that his hearing is fine, not only because I am a normal parent who wants their child to have normal hearing (even though I was perfectly willing and able to parent a child with hearing loss), but also because now we only have to have hearing checks a couple times a year. Which is really great, considering my recent complaints about frequent doctor appointments.
But through this process I have also thought a lot about what it would mean to have a child with something the rest of the world considers a disability. I have given a lot of thought to parents who want their child to not be seen as a deaf child, but a child who happens to be deaf. Do you see the distinction? They don't want the emphasis to be on the deafness, but rather on a child who has infinite possibilities for success in his life.
This is another post without a neat bow. I am thankful for Jack's hearing. I have twice been given the gift of a child whose hearing loss was restored. (And twice the gift of children who have no hearing loss but severe selective hearing loss, iykwim.) I guess what I am saying is that maybe when I hear a child has a diagnosis, I will think twice before saying, "I am sorry." Not that there isn't a time and place for I am sorry. There is. I just know that it wasn't something I wanted to hear. I did not want anyone pitying my son, who is one of the smartest kids I have ever met. (He is starting to recognize letters. He is 2 and has only heard the English language for the past 8 months, 4 of which his ears were full of tapioca pudding.) He is going to do amazing things, and it has nothing to do with how well he hears. Next time I will be more likely to look past whatever the child has, and see the child's potential. That is what is best for the child. And for his mom.
Saturday, November 17, 2012
Guess who learned to suck through a straw today?
Yay, Jack!
Thursday, September 13, 2012
Jack: Two Weeks Post-Op
Thankfully Jack is on a solid diet now. We are still keeping it fairly soft (no pretzels because Mama is mean like that), but he is mostly eating regular foods. If he could talk, I am pretty sure he would say that he is never leaving the kitchen table ever again, thankyouverymuch. He is that obsessed with food. He thinks about it all. the. time.
Also thankfully, his signing vocabulary has probably doubled since his surgery. He was already signing more and milk, with an occasional - water, up, and down - thrown in there. He now signs water all the time, and also signs: banana, food, shoes, socks, and please. We are very impressed. And he is very impressed with himself. There is something magical about that moment when a child realizes that he can communicate what he wants, and that mom and dad Understand! It is beautiful.
We are still watching one of those spots in his repaired palate to make sure it isn't a fistula, but no amount of watching will make it be or not be a fistula. So I am trying my best to leave him alone and wait for the surgeon to look at it again in two weeks.
I have lost track of how many health care professionals my children have seen in the past month. Seriously. Dentists, surgeons, speech therapists. I am not a soccer mom. I am a waiting room mom. Go team.
And now for some pictures. I took these about a month ago, but forgot to post them. I was probably in a waiting room when I should have been posting.
Also thankfully, his signing vocabulary has probably doubled since his surgery. He was already signing more and milk, with an occasional - water, up, and down - thrown in there. He now signs water all the time, and also signs: banana, food, shoes, socks, and please. We are very impressed. And he is very impressed with himself. There is something magical about that moment when a child realizes that he can communicate what he wants, and that mom and dad Understand! It is beautiful.
We are still watching one of those spots in his repaired palate to make sure it isn't a fistula, but no amount of watching will make it be or not be a fistula. So I am trying my best to leave him alone and wait for the surgeon to look at it again in two weeks.
I have lost track of how many health care professionals my children have seen in the past month. Seriously. Dentists, surgeons, speech therapists. I am not a soccer mom. I am a waiting room mom. Go team.
And now for some pictures. I took these about a month ago, but forgot to post them. I was probably in a waiting room when I should have been posting.
Wednesday, September 5, 2012
Jack: One Week Post-Op
Jack saw the plastic surgeon today for his one week post-op appointment. Dr. L. said that it looked like it was healing well, and that if a fistula (hole) was going to form at this point, there isn't much we can do about it. He said that chances are that there will be no fistula, but he pointed out a couple of locations where they could possibly develop. And yes, Jack is still on liquids/baby food consistency until Tuesday. Blah.
He hates hates hates his current diet. I am not sure what he hates more - that he can't have normal food or that we don't let him have full control over the spoons and syringes we use to feed him. For a kid with food control issues, this is a killer. His diet right now is mostly yogurt, baby food bananas, hummus, and Pediasure milkshakes. And he is eating less - he is kind of bored with it. Who can blame him? There are only so many times you can eat baby oatmeal without wanting to fling it at the wall.
And one thing I have learned: baby food is just as nasty now as it was ten years ago when I fed it to Ben. Yay.
On the bright side, he isn't in any pain, we are finished with all medications, and he is back in his own bed (even if he still isn't sleeping through the night). He is also using a B sound now. I just got serenaded with a beautiful song called "Ma-ma-ba-ma-ba-ba". It was awesome. We are praying that he won't develop any fistulas and that his healing will continue over the course of the next months and years.
He hates hates hates his current diet. I am not sure what he hates more - that he can't have normal food or that we don't let him have full control over the spoons and syringes we use to feed him. For a kid with food control issues, this is a killer. His diet right now is mostly yogurt, baby food bananas, hummus, and Pediasure milkshakes. And he is eating less - he is kind of bored with it. Who can blame him? There are only so many times you can eat baby oatmeal without wanting to fling it at the wall.
And one thing I have learned: baby food is just as nasty now as it was ten years ago when I fed it to Ben. Yay.
On the bright side, he isn't in any pain, we are finished with all medications, and he is back in his own bed (even if he still isn't sleeping through the night). He is also using a B sound now. I just got serenaded with a beautiful song called "Ma-ma-ba-ma-ba-ba". It was awesome. We are praying that he won't develop any fistulas and that his healing will continue over the course of the next months and years.
Wednesday, August 29, 2012
Jack's Surgery, Part 2
I apologize for not posting another update yesterday, but once your child comes out of surgery there are more important things than blogging. The repair went well, but it was more complicated than the doctor thought it was going to be. The repaired cleft in his lip was unilateral, so the assumption was that the palate was too. We were also hoping that since his gumline is mostly intact that he would not require a bone graft when he is 7 or 8. We were wrong on both counts. Apparently the palate was more of a bilateral cleft, which means there is a cleft on both sides of the mouth. I knew it looked bilateral to me, but I had never had a doctor tell me it was, so I just assumed that my uneducated eye didn't know what it was looking at.
Also, the clefts extend into the bone of the gum line. So even though it looks like his gum line isn't affected much, he is missing bone on both sides and will need a bilateral graft later on. This is disappointing news for Jack, but will be manageable, of course. Bone grafts are just considered to be very painful surgeries - I know from experience with my leg that the bone doesn't really numb. The skin and tissue around it might be numb, but when you mess with that bone it hurts like the devil.
Ear tube placement also went well, although we haven't actually talked to Dr. V. She had another appointment to get to, but it apparently was a standard tube insertion. His ears don't seem to be bothering him.
His mouth on the other hand, hurts a lot. He spent most of yesterday curled up on top of me, either sleeping or moaning, or moaning in his sleep. He didn't sleep very well, and any rest he did get was thanks to some good drugs. Today he is feeling much better, but still not himself. There is still some drainage and it hurts for him to swallow. We are having to force feed him liquids, pudding, and applesauce with a syringe so the doctor will let us go home.
We did venture out of the room today. We went and found the playroom, where we played trains for awhile. He also spent most of the morning awake, playing trucks and reading.
The plan from here is to go home this afternoon/evening. He will then be on a liquid/baby food diet for two weeks, so don't expect to see us much in any place where they might serve food. My boy loves to eat, so this will be hard for him.
Posts (so far) about Jack's cleft/developmental/IA issues:
Also, the clefts extend into the bone of the gum line. So even though it looks like his gum line isn't affected much, he is missing bone on both sides and will need a bilateral graft later on. This is disappointing news for Jack, but will be manageable, of course. Bone grafts are just considered to be very painful surgeries - I know from experience with my leg that the bone doesn't really numb. The skin and tissue around it might be numb, but when you mess with that bone it hurts like the devil.
Ear tube placement also went well, although we haven't actually talked to Dr. V. She had another appointment to get to, but it apparently was a standard tube insertion. His ears don't seem to be bothering him.
His mouth on the other hand, hurts a lot. He spent most of yesterday curled up on top of me, either sleeping or moaning, or moaning in his sleep. He didn't sleep very well, and any rest he did get was thanks to some good drugs. Today he is feeling much better, but still not himself. There is still some drainage and it hurts for him to swallow. We are having to force feed him liquids, pudding, and applesauce with a syringe so the doctor will let us go home.
We did venture out of the room today. We went and found the playroom, where we played trains for awhile. He also spent most of the morning awake, playing trucks and reading.
Posts (so far) about Jack's cleft/developmental/IA issues:
Tuesday, August 28, 2012
Jack's Surgery
Jack has gone into surgery. Tim and I are hanging, seriously considering breakfast and any other distraction that might come our way. They are going to place ear tubes, do a sedated ABR (hearing test), and then Dr. L will repair his palate. It will probably take around three hours, but each doctor will give updates as they finish their part.
I am a big bundle of nerves. Trying to prepare my heart for the crying and clinging that will happen. Praying that he is already asleep and that Dr. V already has those tubes in. Praying that when he wakes that they will get us back there super fast to comfort that sweet little man. Praying that everything goes more smoothly and perfectly than any tube/palate job ever.
I am a big bundle of nerves. Trying to prepare my heart for the crying and clinging that will happen. Praying that he is already asleep and that Dr. V already has those tubes in. Praying that when he wakes that they will get us back there super fast to comfort that sweet little man. Praying that everything goes more smoothly and perfectly than any tube/palate job ever.
 |
| Not impressed with the new jammies. |
 |
| Much more impressed with the transportation. |
Tuesday, July 24, 2012
Appointments, Part 7: ENTs (and Plastic Surgery Revisited)
I have had messages from several of you about what a bad, bad blogger I have been. During the summer Tim is gone a lot with the church youth, and I am doing the single parent thing. Plus, the kids are home with me all day, which means by the time they drop into bed at night, I am to tired to process a coherent thought. I thought about writing this morning because I didn't have anything on my schedule. But then I spent an hour scheduling doctor's appointments for five different people. Good times.
Anyway, on to the point of this post. ENTs and plastic surgery. Now you may be wondering why I am talking about plastic surgery again, when I just talked about plastic surgery two months ago.
Well, after Jack saw the Commission doctors, we saw the ENT that did Kate's first set of tubes, thinking that he would do Jack's too. Sure enough, he was willing to work with Dr. Andy to do them at the same time as the palate repair, but he was unwilling to do the sedated ABR (hearing test) the same day. He said he really preferred to do the the tubes and ABR first, and then let them do the palate repair later.
I nicely told him that if he was unwilling that I would have to take Jack to the other major hospital in town (that Kate is now a patient of) and let them do it all over there.
Suddenly he was a willing participant.
Fine. So I spent the next two weeks playing phone tag with the ENT's surgical coordinator and Dr. Andy's surgical coordinator, trying to get them to work together. They finally called me back with a date in the middle of August.
Fine. So then the next day I got a call from the Commission (remember how much I love them, she says sarcastically) telling me that Jack cannot get the sedated ABR done at this particular hospital because they (the Commission) don't have an audiologist contracted over there. They wanted me to go ahead and have the tubes and palate done, and then have a non-sedated ABR done in their office at a later date.
Fine. So I spent the next 24 hours mulling over all of this, and I realized that we were talking about something that was still more than two months away. I then I realized that this was more than enough time to research other options. Because at this point, I was fed up beyond belief at having to argue with the Commission, argue with a doctor, and play phone tag for weeks on end.
So, being me, I went into research mode again. I go to the Rumor Queen boards. I go to the Adopt Cleft Yahoo boards. I call people I know locally. And I learned I had a couple of really excellent options at that other hospital across town (where Kate sees her ENT). So I made the call to the Commission to request an appointment with the physicians over there. Of course, they wanted me to wait and go through clinic again.
In August or September.
No, we just went through clinic in May. I am not waiting until August or September. I want to go to their offices and see them there. Now.
And so we spent last Wednesday at that other hospital seeing Dr. V, the ENT, and Dr. L, the plastic surgeon.
Dr. V was very nice. She took what little history we had and agreed that Jack probably needs tubes placed. She explained that because it is such a minor procedure and the palate repair is a much more complicated surgery, that the palate repair would be scheduled first, and then whatever ENT in their practice was at the hospital that day would do the tubes. Since we are already in there so often and I know how they work, I am comfortable with that.
Then we went downstairs to see Dr. L. Now, every time I asked for recommendations for Dr. L, people would say, "Oh, he is the fireball. You will love him." And then they would go on to tell me how he pours himself into his patients, staying on top of the latest techniques, and is just eager to do his best every single day.
He did not disappoint. We saw his student first (SOP at this teaching hospital), and then Dr. L came in without a white coat. Ie, he didn't terrify Jack right off the bat. He takes a bit of history, looks at his palate, explains to me structurally why Jack's left ear is a little different from the right one, notices the stitch that has been in his lip since that repair in March 2011. He tells me that he doesn't use no-nos on kids this old and that Jack doesn't have to be weaned from his soft-spout sippy. He notices Kate, asks if he could look at her palate repair. Kate says no, but I try to persuade her. He stops me and says, "No, that's ok if she doesn't want to." Ie, he cares about how patients feel, even when it isn't his patient.
Then he told me that his surgical coordinator was on vacation all week, but that he knew he had an opening on August 28 so if we could get it all coordinated that it would probably be that day. I am sorry, but I have never known a surgeon to have a clue what their schedule looks like a month out with a coordinator telling them. Wow.
Then he gave me his personal email address (in case I thought of any other questions) and his personal secretary's phone number (in case I couldn't get him via email). Again, never had a surgeon do that before.
Oh, and we were in and out in just over 25 minutes (not counting new patient paperwork) and spent about 20 minutes of it with him. Again, a record.
So, all that long story, just to say that we now have a new plastic surgeon and a new ENT. Still waiting on the final details, but it looks like they will do the repair, the tubes, and the ABR all at the same time, and Jack will spend the night at the hospital . I am feeling good about the whole thing, whereas I had a bad feeling about everything over at the other place, what with the arguing and such. Those other docs are good physicians/surgeons, I like the other hospital fine, but I think that this is a good place for Jack right now.
Posts (so far) about Jack's cleft/developmental/IA issues:
Anyway, on to the point of this post. ENTs and plastic surgery. Now you may be wondering why I am talking about plastic surgery again, when I just talked about plastic surgery two months ago.
Well, after Jack saw the Commission doctors, we saw the ENT that did Kate's first set of tubes, thinking that he would do Jack's too. Sure enough, he was willing to work with Dr. Andy to do them at the same time as the palate repair, but he was unwilling to do the sedated ABR (hearing test) the same day. He said he really preferred to do the the tubes and ABR first, and then let them do the palate repair later.
I nicely told him that if he was unwilling that I would have to take Jack to the other major hospital in town (that Kate is now a patient of) and let them do it all over there.
Suddenly he was a willing participant.
Fine. So I spent the next two weeks playing phone tag with the ENT's surgical coordinator and Dr. Andy's surgical coordinator, trying to get them to work together. They finally called me back with a date in the middle of August.
Fine. So then the next day I got a call from the Commission (remember how much I love them, she says sarcastically) telling me that Jack cannot get the sedated ABR done at this particular hospital because they (the Commission) don't have an audiologist contracted over there. They wanted me to go ahead and have the tubes and palate done, and then have a non-sedated ABR done in their office at a later date.
Fine. So I spent the next 24 hours mulling over all of this, and I realized that we were talking about something that was still more than two months away. I then I realized that this was more than enough time to research other options. Because at this point, I was fed up beyond belief at having to argue with the Commission, argue with a doctor, and play phone tag for weeks on end.
So, being me, I went into research mode again. I go to the Rumor Queen boards. I go to the Adopt Cleft Yahoo boards. I call people I know locally. And I learned I had a couple of really excellent options at that other hospital across town (where Kate sees her ENT). So I made the call to the Commission to request an appointment with the physicians over there. Of course, they wanted me to wait and go through clinic again.
In August or September.
No, we just went through clinic in May. I am not waiting until August or September. I want to go to their offices and see them there. Now.
And so we spent last Wednesday at that other hospital seeing Dr. V, the ENT, and Dr. L, the plastic surgeon.
Dr. V was very nice. She took what little history we had and agreed that Jack probably needs tubes placed. She explained that because it is such a minor procedure and the palate repair is a much more complicated surgery, that the palate repair would be scheduled first, and then whatever ENT in their practice was at the hospital that day would do the tubes. Since we are already in there so often and I know how they work, I am comfortable with that.
Then we went downstairs to see Dr. L. Now, every time I asked for recommendations for Dr. L, people would say, "Oh, he is the fireball. You will love him." And then they would go on to tell me how he pours himself into his patients, staying on top of the latest techniques, and is just eager to do his best every single day.
He did not disappoint. We saw his student first (SOP at this teaching hospital), and then Dr. L came in without a white coat. Ie, he didn't terrify Jack right off the bat. He takes a bit of history, looks at his palate, explains to me structurally why Jack's left ear is a little different from the right one, notices the stitch that has been in his lip since that repair in March 2011. He tells me that he doesn't use no-nos on kids this old and that Jack doesn't have to be weaned from his soft-spout sippy. He notices Kate, asks if he could look at her palate repair. Kate says no, but I try to persuade her. He stops me and says, "No, that's ok if she doesn't want to." Ie, he cares about how patients feel, even when it isn't his patient.
Then he told me that his surgical coordinator was on vacation all week, but that he knew he had an opening on August 28 so if we could get it all coordinated that it would probably be that day. I am sorry, but I have never known a surgeon to have a clue what their schedule looks like a month out with a coordinator telling them. Wow.
Then he gave me his personal email address (in case I thought of any other questions) and his personal secretary's phone number (in case I couldn't get him via email). Again, never had a surgeon do that before.
Oh, and we were in and out in just over 25 minutes (not counting new patient paperwork) and spent about 20 minutes of it with him. Again, a record.
So, all that long story, just to say that we now have a new plastic surgeon and a new ENT. Still waiting on the final details, but it looks like they will do the repair, the tubes, and the ABR all at the same time, and Jack will spend the night at the hospital . I am feeling good about the whole thing, whereas I had a bad feeling about everything over at the other place, what with the arguing and such. Those other docs are good physicians/surgeons, I like the other hospital fine, but I think that this is a good place for Jack right now.
Posts (so far) about Jack's cleft/developmental/IA issues:
- Let the Appointments Begin!
- Appointments, Part 2: Audiology
- Appointments, Part 3: Plastic Surgeons
- Appointments, Part 4: The Dentist
- Appointments, Part 5: Early Intervention
- Appointments, Part 6: Speech
- Surgery
- ???
Wednesday, June 13, 2012
Appointments, Part 6: Speech
Please forgive my lack of posting. We have been on vacation, and I am still trying to find our new out-of-school norm.
I mentioned earlier that our state's Early Intervention folks had done an evaluation on Jack, and there was one area that he qualified for services: Speech. He has almost caught up in every other area, but his speech is very slow in coming. I get a lot of questions about Jack's speech, so I figured that this would be a good place to answer some basic questions.
Can he speak English?
This one gets an eye roll out of me every time. No, he can't speak English. Most 21 month olds that I know aren't exactly fluent, ya know?
How will you teach him English?
The same way every English-speaking parent teaches their baby English - they talk to him. Children learn to understand new languages amazingly fast. That's why people should learn second or third languages as small children instead of as adults or teenagers. (But wait, that's another rant of mine.)
Can he speak Chinese?
Nope, he can't speak Chinese either. The thing is, he doesn't speak. He babbles. Because of his cleft palate (the big, gaping hole in the roof of his mouth that goes up into his nasal cavity) he cannot produce most consonant sounds. He can't make the puff of air he needs for some sounds. Couple that with the fact that he hasn't been encouraged to babble and play with his sounds. You know how parents copy their baby's sounds and go back and forth being silly? This teaches the child to explore their sounds and to imitate words. But Jack is just now experiencing that. So, he can say, "Ah gah!" and "mamamamamamama," and "Uh-oh!" and "Ow!" That is his current favorite repertoire.
Will he ever learn to talk?
Absolutely. We are starting off with an hour of speech therapy a week. Melissa comes to our house and basically plays with Jack and me. She points out positive things he is doing and models exercises for us to do. For example, this week she wants us to repeat the random noises he makes and get really silly so he will be encouraged to repeat the sounds that we are making. It's actually really fun, and Jack gets crazy giggly.
We are also working on teaching him sign language so that he will be able to start communicating his needs with words instead of tears. Last night in the grocery store he signed milk when we walked past the milk and pizza when we walked past the pizza. And then we both got crazy giggly.
(Have I ever mentioned that a great place to have a conversation with an infant/toddler is in the grocery store? You can get lots of eye and skin contact and teach them tons of new stuff, while entertaining the other shoppers at the same time. Yes, they will stare at you if play peek a boo with your baby while you pick out tomato sauce, but it will also make them smile really big, which most tired shoppers need. Consider it your contribution to making your town a happier place to live:)
So, to sum up, Jack is right where we expect him to be right now. He is exploring sounds. He is trying to imitate us some. He is starting to use signs. He's a smart kid. And he is awesome like that.
Posts (so far) about Jack's cleft/developmental/IA issues:
- Let the Appointments Begin!
- Appointments, Part 2: Audiology
- Appointments, Part 3: Plastic Surgeons
- Appointments, Part 4: The Dentist
- Appointments, Part 5: Early Intervention
- ENT (and probably more audiology)
- Plastic Surgeons...Again (maybe)
- Surgery
Wednesday, May 30, 2012
Appointments, Part 5: Early Intervention
A couple of weeks after we got home from China, I took Jack to see the pediatrician at the International Adoption Clinic at the nearby university hospital. As part of the work-up, an OT came in and did an assessment of Jack.
At the time, she and I talked about how Jack's walking had largely improved since I met him, but how he ran with his arms extended for balance. And how he had recently learned to put rings on the yellow cone, and go up and down stairs holding an adult's hand, but he still lacked a pincer grasp, and he couldn't lean down and pick things up without falling over. At the time, she indicated that if evaluated for Early Intervention that day, he would qualify for both physical and occupational therapy. We discussed how I fully expected him to continue to improve quickly over the coming weeks, but if he didn't continue then I should push for OT services with someone who is also skilled in gross motor development. She gave me some exercises to do, and off we went.
In the meantime, I had been trying to get Jack enrolled in Early Intervention. At first, they qualified him based on his severe hearing loss. Except, after we saw the audiologist we realized that he didn't actually have severe hearing loss, and therefore no longer qualified based on that. And so we had to start over with a thorough evaluation of several different developmental areas. When I filled out the questionnaire, he failed every single area.
Two weeks ago, Ms. Teresa came out to do the evaluation. This was 10 days after the questionnaire. Two weeks after we saw the OT. And he did totally awesome. His walking - while still not developmentally at 21 months - had improved even further, and we have no reason to think it won't continue. His grasp has gone from a full hand grasp to a fingertip grasp. Still no two finger pincer, but it will come.
He did things that I had tried to teach him only days before, but at the time he hadn't figured out. He could put long pegs into the tiny holes on the first try. He could put wooden shapes into the puzzle. He could drive the Little People car. He could sit on a riding toy and push with his legs.
In other words, he is learning even faster than I thought.
But of course, there is one area in which he did qualify for Early Intervention - speech. But that is a post for another day:)
Posts (so far) about Jack's cleft/developmental/IA issues:
At the time, she and I talked about how Jack's walking had largely improved since I met him, but how he ran with his arms extended for balance. And how he had recently learned to put rings on the yellow cone, and go up and down stairs holding an adult's hand, but he still lacked a pincer grasp, and he couldn't lean down and pick things up without falling over. At the time, she indicated that if evaluated for Early Intervention that day, he would qualify for both physical and occupational therapy. We discussed how I fully expected him to continue to improve quickly over the coming weeks, but if he didn't continue then I should push for OT services with someone who is also skilled in gross motor development. She gave me some exercises to do, and off we went.
In the meantime, I had been trying to get Jack enrolled in Early Intervention. At first, they qualified him based on his severe hearing loss. Except, after we saw the audiologist we realized that he didn't actually have severe hearing loss, and therefore no longer qualified based on that. And so we had to start over with a thorough evaluation of several different developmental areas. When I filled out the questionnaire, he failed every single area.
Two weeks ago, Ms. Teresa came out to do the evaluation. This was 10 days after the questionnaire. Two weeks after we saw the OT. And he did totally awesome. His walking - while still not developmentally at 21 months - had improved even further, and we have no reason to think it won't continue. His grasp has gone from a full hand grasp to a fingertip grasp. Still no two finger pincer, but it will come.
He did things that I had tried to teach him only days before, but at the time he hadn't figured out. He could put long pegs into the tiny holes on the first try. He could put wooden shapes into the puzzle. He could drive the Little People car. He could sit on a riding toy and push with his legs.
In other words, he is learning even faster than I thought.
But of course, there is one area in which he did qualify for Early Intervention - speech. But that is a post for another day:)
Posts (so far) about Jack's cleft/developmental/IA issues:
- Let the Appointments Begin!
- Appointments, Part 2: Audiology
- Appointments, Part 3: Plastic Surgeons
- Appointments, Part 4: The Dentist
- ENT (and probably more audiology)
- Speech (even though this is part of EI, it will get it's own post)
Tuesday, May 22, 2012
Appointments, Part 4: The Dentist
(We saw the dentist at the Commission, but he is retiring at the age of 85, and - I kid you not - he miscounted Jack's teeth. The sum total of his advice is always, "Brush your teeth!" Then he hands me a Princess Tiana toothbrush and sends us on our way.)
My kids adore Dr. Wendy - and she is a Commission provider, even though she doesn't come to clinic. She is competent, has excellent bedside manner, and Will always liked how pretty she was. When Jack got into the chair, he wasn't particularly happy, but once I signed to him (have I mentioned we are signing again? Yay!) that we were going to brush his teeth, he lay really still waiting. He let them clean his teeth and even take x-rays. He did so well that the hygienist said she wanted him to teach the 10 year olds to be still in the chair.
We have been concerned with Jack's lack of teeth - he has four on the top (the middle two, and the first two molars) and six on the bottom (the middle four, and the first two molars). Dr. T (the IA doc) was concerned that the top ones might be missing on both sides. But we got good news at the dentist.
Dr. Wendy says that all of his baby teeth are present, but she isn't completely sure of the position of the baby tooth nearest to the cleft. It was a frontal x-ray, and she said it is possible the tooth is far back in the palate, and the plastic surgeon may need to remove it during the palate repair. Or maybe it is where is is supposed to be and will be nothing at all. She could also see the permanent teeth buds growing, in all of their crooked glory. The only one not visible was the one nearest the cleft, which probably isn't there at all. Kate is completely missing this same tooth.
Posts (so far) about Jack's cleft issues:
Posts (yet to come) about Jack's cleft issues:
- ENT (and probably more audiology)
- Early Intervention (this one might be a doozy)
- Speech (even though this is part of EI, it might get it's own post)
Saturday, May 12, 2012
Appointments, Part 3: Plastic Surgeons
Ok, back to our visit last week at the Commission's cleft clinic. We have done this more times than we can count with Kate, but for Jack
it was a new experience. (Warning: detailed information for those who care about cleft issues and/or who are local people who have asked about these doctors lately.)
(Skip to the end if you want the short version.)
There are these three brothers in our area who are plastic surgeons, and they all three work with the Commission. Or, at least they used to. Dr. Woody did Kate's repair, but unfortunately he is in semi-retirement because of health issues. Last time she was there she saw Dr. Andy instead. We noticed several differences in their approaches. First, Dr. Andy has a better bedside manner overall. It is hard to describe if you haven't met either of them in person, but he looks you in the eye and is easy to talk with. However, we adore Dr. Woody. Not only is he a fabulous surgeon, but we like several of his methods better. For example, Dr. Andy recommends no-nos for the arms and syringe feeding after surgery to prevent the child from messing up their stitches. While I know these things are common practice, Woody felt like it was more bother than help for a two-year old. He never made us use them.
Also, Dr. Woody believed that if the initial lip repair was good that the child should be a teen before deciding if they wanted cosmetic surgery to "clean up" the area (nose, lip, etc.). He always told Kate that her lip looked good. Last time Kate was at the Commission, Andy told Kate he wanted to fix it now. That was the first time anyone had ever told her that her lip needed to be fixed at all, and now it is an issue. So what we had before was a child who knew her lip was different but didn't care, and what we have now is a child who worries about her lip being different. Needless to say, Mama Bear is a bit miffed about that. I plan to have a chat with Dr. Andy in the near future about little girls, self-esteem, and body image.
Ahem. Back to Jack's appointment.
One the first things we noticed about Jack's cleft was that the gum line is somewhat intact. We were fully expecting it to be a complete cleft since the lip, nose, and palate are involved, but when we snuck a peek we got a surprise. The plastic surgeon (Dr. Andy) thinks that because Jack's gum line is partially intact, he probably won't need a bone graft when he is older. This is fabulous news, as this can be a very painful procedure. (Kate will probably have hers in the next couple of years, and we are not looking forward to it.)
Dr. Andy hopes to do the palate repair sometime this summer. Ideally we will coordinate the palate repair, get the ENT to put in tubes, and have a sedated ABR (hearing test) done, all at the same time. It will likely be a one night stay in the hospital, and he will be allowed to go home when he is eating/drinking/urinating. It won't be fun, but we will all survive.
Also, I got the physical copy of Jack's hearing test today. Not only is his hearing loss in the mild/moderate category, but according to that latest test he can hear at 20 decibels. The original report from China had him hearing at 45-100. (I am sure that all of the audiologists, doctors, and SLPs out there are shaking their heads at my lack of ability to use hearing test terminology appropriately, but that is the best I can do at the moment.) That is huge, and we are very happy.
Posts (so far) about Jack's cleft issues:
Posts (yet to come) about Jack's cleft issues:
So, to recap: Good news - Probably no bone graft needed. Repair in the summer (July?). Probably will get tubes. Hearing is much better than expected.
(Skip to the end if you want the short version.)
There are these three brothers in our area who are plastic surgeons, and they all three work with the Commission. Or, at least they used to. Dr. Woody did Kate's repair, but unfortunately he is in semi-retirement because of health issues. Last time she was there she saw Dr. Andy instead. We noticed several differences in their approaches. First, Dr. Andy has a better bedside manner overall. It is hard to describe if you haven't met either of them in person, but he looks you in the eye and is easy to talk with. However, we adore Dr. Woody. Not only is he a fabulous surgeon, but we like several of his methods better. For example, Dr. Andy recommends no-nos for the arms and syringe feeding after surgery to prevent the child from messing up their stitches. While I know these things are common practice, Woody felt like it was more bother than help for a two-year old. He never made us use them.
Also, Dr. Woody believed that if the initial lip repair was good that the child should be a teen before deciding if they wanted cosmetic surgery to "clean up" the area (nose, lip, etc.). He always told Kate that her lip looked good. Last time Kate was at the Commission, Andy told Kate he wanted to fix it now. That was the first time anyone had ever told her that her lip needed to be fixed at all, and now it is an issue. So what we had before was a child who knew her lip was different but didn't care, and what we have now is a child who worries about her lip being different. Needless to say, Mama Bear is a bit miffed about that. I plan to have a chat with Dr. Andy in the near future about little girls, self-esteem, and body image.
Ahem. Back to Jack's appointment.
One the first things we noticed about Jack's cleft was that the gum line is somewhat intact. We were fully expecting it to be a complete cleft since the lip, nose, and palate are involved, but when we snuck a peek we got a surprise. The plastic surgeon (Dr. Andy) thinks that because Jack's gum line is partially intact, he probably won't need a bone graft when he is older. This is fabulous news, as this can be a very painful procedure. (Kate will probably have hers in the next couple of years, and we are not looking forward to it.)
Dr. Andy hopes to do the palate repair sometime this summer. Ideally we will coordinate the palate repair, get the ENT to put in tubes, and have a sedated ABR (hearing test) done, all at the same time. It will likely be a one night stay in the hospital, and he will be allowed to go home when he is eating/drinking/urinating. It won't be fun, but we will all survive.
Also, I got the physical copy of Jack's hearing test today. Not only is his hearing loss in the mild/moderate category, but according to that latest test he can hear at 20 decibels. The original report from China had him hearing at 45-100. (I am sure that all of the audiologists, doctors, and SLPs out there are shaking their heads at my lack of ability to use hearing test terminology appropriately, but that is the best I can do at the moment.) That is huge, and we are very happy.
Posts (so far) about Jack's cleft issues:
Posts (yet to come) about Jack's cleft issues:
- ENT (and probably more audiology)
- Early Intervention (this one might be a doozy)
- Speech (even though this is part of EI, it might get it's own post)
- Dentist (ie, How many teeth does Jack have, and will that be all?)
So, to recap: Good news - Probably no bone graft needed. Repair in the summer (July?). Probably will get tubes. Hearing is much better than expected.
Friday, May 4, 2012
Appointments, Part 2: Audiology
This post started out as a full description of all the the specialists we have seen so far, but I quickly realized that it would take a couple of hours to read it all, so I better break it up a little:)
We spent yesterday morning at the Commission's cleft clinic. We have done this more times than we can count with Kate, but for Jack it was a new experience. Thankfully it went very well. And so there is good news, and there is bad news.
First, the good news.
We saw Kate' regular audiologist (who is now Jack's audiologist), and she did an evaluation, even though Jack's ears are full of fluid and infected. She told us that she feels like with tubes, Jack has a great chance at completely normal hearing. We are absolutely thrilled with this news. She said his loss is probably mild/moderate and told us to come back when his ears are infection-free for a more accurate test. She also requested a sedated ABR to be done during the palate repair.
And now for the bad news.
Jack's enrollment in early intervention was based on his hearing loss being severe in his left ear. A diagnosis of mild/moderate hearing loss means that he no longer qualifies for services based on his hearing loss. When Kate was enrolled, cleft palate was considered a significant enough issue to get her in the program, but it no longer does. (I would love to know how many cleft kids don't need speech services, for Pete's sake.) And so now I have to start from scratch and get him qualified another way. Basically it has to be proven that he has significant development delays to get the speech therapy that he will obviously need, even though he is very young and the delays aren't that serious yet. Should be fun. I am eagerly awaiting the paperwork to get the ball rolling on that. Hopefully his expressive/receptive speech delays will be considered significant enough, because I don't think his motor delays alone will be.
The OT we saw on Wednesday had warned me about this. Unfortunately, budget cuts mean that they have to find ways to cut services for kids who need them. She said that I will have to fight for services that they automatically would've offered to Kate. That's ok. I am pretty good at that. Y'all remember how much I lovearguing with navigating insurance companies, state-run red tape services, and healthcare providers? Actually I take a sick
pleasure in conquering it, but that is probably a post for another day.
We spent yesterday morning at the Commission's cleft clinic. We have done this more times than we can count with Kate, but for Jack it was a new experience. Thankfully it went very well. And so there is good news, and there is bad news.
First, the good news.
We saw Kate' regular audiologist (who is now Jack's audiologist), and she did an evaluation, even though Jack's ears are full of fluid and infected. She told us that she feels like with tubes, Jack has a great chance at completely normal hearing. We are absolutely thrilled with this news. She said his loss is probably mild/moderate and told us to come back when his ears are infection-free for a more accurate test. She also requested a sedated ABR to be done during the palate repair.
And now for the bad news.
Jack's enrollment in early intervention was based on his hearing loss being severe in his left ear. A diagnosis of mild/moderate hearing loss means that he no longer qualifies for services based on his hearing loss. When Kate was enrolled, cleft palate was considered a significant enough issue to get her in the program, but it no longer does. (I would love to know how many cleft kids don't need speech services, for Pete's sake.) And so now I have to start from scratch and get him qualified another way. Basically it has to be proven that he has significant development delays to get the speech therapy that he will obviously need, even though he is very young and the delays aren't that serious yet. Should be fun. I am eagerly awaiting the paperwork to get the ball rolling on that. Hopefully his expressive/receptive speech delays will be considered significant enough, because I don't think his motor delays alone will be.
The OT we saw on Wednesday had warned me about this. Unfortunately, budget cuts mean that they have to find ways to cut services for kids who need them. She said that I will have to fight for services that they automatically would've offered to Kate. That's ok. I am pretty good at that. Y'all remember how much I love
Wednesday, May 2, 2012
Let the Appointments Begin!
One of the first things we noticed about Jack were his motor delays. They are not severe - he is walking, crawling, and starting to crawl up the stairs. However, he is not very steady on his feet, has very little core strength (although his full-hand grasp will pull your arm off), and does not have a pincer grasp. He is making great progress since we met him, but he has some catching up to do. The OT gave me several exercises to do to help him improve in these areas, and I feel like it will happen quickly.
The lab work was awesome of course. Doesn't everyone love having a dozen or so vials drawn for vaccination titres and various other tests. And this week I have feces collection duty. Bonus!
And last, but not least, Jack has a right ear infection. Actually, the left is probably infected too, but it was too full of wax for her to be able to tell completely. She tried pulling it out, but it was in there pretty deep. Which also means we still haven't got a good look at that left ear canal.
All in all, it was a good day - if only for the fact that it went pretty much as expected and I got Jamba Juice at the end. Jack got meatloaf and a banana. We were both happy.
Tomorrow is the plastic surgeon and audiologist, along with a SLP, dietician, and a dentist. Friday is the TB reading. I am already putting that new cell phone to good use.
Monday, April 16, 2012
Day 11 Guangzhou
Today was our consulate appointment. We were up and out early to make it on time. Thankfully Jacob stayed at the hotel with the boys, while Tim and I did the paperwork. Mom and Kate came along for moral support and pearl shopping later on. The oath and paperwork took only minutes, and we loaded back on the bus and went shopping. We have the entire day free now, and have nothing to do until 4pm tomorrow. Don't worry, I am not claiming boredom. I am very happy to have this down time. Everyone but me and Jack are at the park playing. We are thinking of ordering out for dinner. Tomorrow I will try to finish up shopping in the morning before leaving Guangzhou at 4:30. From here we go to Hong Kong, and then fly home on Wednesday.
Jack is in a great mood today. He has now changed his mind about bananas and loves them. He is also nuts about Raisin Bran, but only if it is from his Daddy's bowl. He really doesn't want them from his own bowl. He has giggled and carried on all day today, playing in front of the mirror and lifting his shirt for zerberts. Right now he is napping - have I mentioned how easily he goes to sleep? He fusses for about 3 minutes and then he is out like a light.
I haven't taken a single photo today - no cameras are allowed in the consulate. So today it is just me, being happy about our down time. I don't know when I will post again because of our travel, but I will drop by for an update if I have a chance.
Jack is in a great mood today. He has now changed his mind about bananas and loves them. He is also nuts about Raisin Bran, but only if it is from his Daddy's bowl. He really doesn't want them from his own bowl. He has giggled and carried on all day today, playing in front of the mirror and lifting his shirt for zerberts. Right now he is napping - have I mentioned how easily he goes to sleep? He fusses for about 3 minutes and then he is out like a light.
I haven't taken a single photo today - no cameras are allowed in the consulate. So today it is just me, being happy about our down time. I don't know when I will post again because of our travel, but I will drop by for an update if I have a chance.
Sunday, April 15, 2012
Day 10 Guangzhou
I know my blog has been less than warm and fuzzy lately. I apologize
for that. The truth is that when I am hungry and/or tired, I can get
really obnoxious. And I will take everyone down with me. At one point
yesterday, Will suggested I needed to eat something because I was being
mean to him.
Nothing like being taken down a notch by your 7 year old.
Anyway, I got a full eight hours last night and then ate an enormous breakfast this morning, so today has been much better. We met up with our group and headed over to the church on Shamian Island. It was a lovely service in both Mandarin and English, so we got to understand what was going on. Some of the songs were in English, but honestly, it was such a beautiful thing to listen to praise songs in Mandarin that I didn't mind at all not to understand all of the words. The congregation has been there for twenty years, and it was standing room only - probably 250 people.
Then we headed to Lucy's, the American restaurant that
caters to adoptive families, and then did some shopping. I was
expecting everything to be closed, but there were still quite a few
businesses that were open. For dinner we decided to return to the island
to shop a bit more and eat at the Italian restaurant. Yum. That's all
I can say about that.
His cleft lip repair looks great, and the cleft does not appear to go all the way through the gumline. The cleft palate is pretty wide though. He has some trouble hearing us in a crowd, but seems to hear us in the hotel room ok. We are still trying to watch him and figure out exactly the extent of his hearing loss. I am eager to get him to an audiologist.
Thank you to everyone who has been praying for us. Today was so much better than yesterday. Tomorrow is the consulate appointment. If the paperwork is all in order, they will process his visa by Tuesday.
Night:)
Nothing like being taken down a notch by your 7 year old.
Anyway, I got a full eight hours last night and then ate an enormous breakfast this morning, so today has been much better. We met up with our group and headed over to the church on Shamian Island. It was a lovely service in both Mandarin and English, so we got to understand what was going on. Some of the songs were in English, but honestly, it was such a beautiful thing to listen to praise songs in Mandarin that I didn't mind at all not to understand all of the words. The congregation has been there for twenty years, and it was standing room only - probably 250 people.
I
haven't said much about Jack lately either. He and I are still
figuring each other out, which I am sure will be a life long process.
But I know that he is super-sweet. He loves hugs and kisses. Loves to
put his feet in my face. He has a crazy appetite and will eat until you
leave the table. Today he prefered his Daddy, but still let me hug and
kiss on him. If he is happiest when he is eating, then he is second
happiest when he is running. He is already getting more steady on his
feet, and he ran around the playground like a mad man today, full steam
ahead. He is going to keep me on my toes.
His cleft lip repair looks great, and the cleft does not appear to go all the way through the gumline. The cleft palate is pretty wide though. He has some trouble hearing us in a crowd, but seems to hear us in the hotel room ok. We are still trying to watch him and figure out exactly the extent of his hearing loss. I am eager to get him to an audiologist.
He has spent the last couple days unhappy. I'm not sure if it was the lack of sleep, or if he is finally grieving a bit, or a combination of the two, but he seems better today. Which I am very thankful for. He has a pretty happy disposition, so to hear him cry and not be able to offer a snack or drink or toy to make it all better is hard. But that is part of parenting, right? Mom and Dad can't always fix everything, but we do the best we can to love and to guide.
Thank you to everyone who has been praying for us. Today was so much better than yesterday. Tomorrow is the consulate appointment. If the paperwork is all in order, they will process his visa by Tuesday.
Night:)
Tuesday, March 20, 2012
Have I mentioned that Kate hates her ear drops?
Kate developed a right ear infection about a week and a half ago, and so I took her into the pediatrician last Monday. I could literally smell the infection, and there was a lot of drainage. (TMI? Sorry.)
Dr. Q gave her an oral antibiotic and said to use the antibiotic ear drops twice a day for 5 days. Four days into the treatment, the ear drops disappeared. I looked everywhere and asked the kids, but I thought I had misplaced them or thrown them away because I couldn't find them anywhere.
Yesterday I took Kate into her ENT for the follow-up. Our ENT works at a teaching hospital, so we always see the student first, then Dr. M. The student came in, looked in her ear, and said it was healing. He asked me if we used the drops, and I told him about losing them on day 4. He said that was ok, that we didn't have to finish the drops because the drainage had stopped.
After he left the room, Kate asked me if she had to have any more drops in her ears.
Me: Not this time around. He said you could just finish the other medicine (oral).
Kate: Oh. Well, then. I guess I can tell you where the ear drops are.
Me: You know where they are?
Kate: Yes. They are in my room under the plastic wrapping for Jack's new mattress.
Me: Did you hide them there?
Kate: Yes.
Unfortunately at that point, I lost my parental composure and totally started cracking up. I never imagined that my 5 year old daughter had hidden her ear drops. I mean, I knew she hated them, but to go to these lengths and then lie about it... it was a little surprising. (I know. I get Mommy of the Year Award for not refilling the Rx AND for laughing at my daughter's misbehavior.)
Then Dr. M came in. I told him and the student that I now knew where the drops were. Dr. M said, that's good because her ear still looks pretty bad. I want you to give her 4 drops, 4 times a day, for the next 2 days.
That's right Kate, you just quadrupled your remaining doses because you decided to lie to mommy.
Needless to say, we had a conversation on the way home about the consequences of lying AND of not following the doctor's instructions.
Dr. Q gave her an oral antibiotic and said to use the antibiotic ear drops twice a day for 5 days. Four days into the treatment, the ear drops disappeared. I looked everywhere and asked the kids, but I thought I had misplaced them or thrown them away because I couldn't find them anywhere.
Yesterday I took Kate into her ENT for the follow-up. Our ENT works at a teaching hospital, so we always see the student first, then Dr. M. The student came in, looked in her ear, and said it was healing. He asked me if we used the drops, and I told him about losing them on day 4. He said that was ok, that we didn't have to finish the drops because the drainage had stopped.
After he left the room, Kate asked me if she had to have any more drops in her ears.
Me: Not this time around. He said you could just finish the other medicine (oral).
Kate: Oh. Well, then. I guess I can tell you where the ear drops are.
Me: You know where they are?
Kate: Yes. They are in my room under the plastic wrapping for Jack's new mattress.
Me: Did you hide them there?
Kate: Yes.
Unfortunately at that point, I lost my parental composure and totally started cracking up. I never imagined that my 5 year old daughter had hidden her ear drops. I mean, I knew she hated them, but to go to these lengths and then lie about it... it was a little surprising. (I know. I get Mommy of the Year Award for not refilling the Rx AND for laughing at my daughter's misbehavior.)
Then Dr. M came in. I told him and the student that I now knew where the drops were. Dr. M said, that's good because her ear still looks pretty bad. I want you to give her 4 drops, 4 times a day, for the next 2 days.
That's right Kate, you just quadrupled your remaining doses because you decided to lie to mommy.
Needless to say, we had a conversation on the way home about the consequences of lying AND of not following the doctor's instructions.
Sunday, November 13, 2011
An Announcement, Part 4
Just in case you missed the beginning of the story, here are Part 1, Part 2, and Part 3.
On Monday morning, I got up bright and early and emailed our agency. I said, if he is back on the shared list this morning, we want you to lock his file for us. And I sat and waited with my laptop on and my phone in my hand. I knew that if my email popped up first, she hadn't found him. But if the phone rang, he would be ours.
And the phone rang. Sure enough, Dana had found him. I gave her our full names, birthdates, etc., and listened to her type, entering the information into the website. And she locked him in.
You would think a person could just relax at that point, right? But no, that is when the real stress begins!
At that point I made a copy of his file, including a note outlining his known special needs, to be delivered to our local pediatrician, Dr. Q. I called our international adoption doctor, Dr. T, and then emailed his file to her. Then, I called Kate's audiologist, Dr. S, and discussed his hearing test in the file with her.
I would've called Kate's old SLP, Jennifer, but I had already called her the week before. When we couldn't find his file.
The audiologist told me that while he has pretty serious hearing loss in the left ear, it appears the right ear is much less serious. Perhaps he has excess fluid and infections because of the cleft, and his hearing in that ear can be somewhat restored.
Dr. Q's first comment to me was, "I can't find a single thing wrong with this kid. He is perfect for you." My response? Yes, we think so too.
With our 72 hour deadline approaching on Wednesday afternoon, we joyfully told Dana that we wanted to accept the referral.
Dr. T is usually very quick to get back with us with any sort of question, but for some reason she didn't get back to us until after our decision. When she did call, she basically agreed with Dr. Q. She then went on to express some concern that his height and weight are low (teeny, in fact), but his head is nice and big (heh), which means his brain is growing. She was also concerned that he is a bit anemic. Tim and I were both prepared for all of that, so while we are concerned for his nutrition, I knew it wouldn't stop us from adopting him. She was even less concerned about his hearing than we were. She felt like even if tubes don't improve his hearing, other procedures/devices probably will. She doesn't feel like he will be deaf. Not even close.
I told her I was really glad that her report was so positive, because we had already sent in the paperwork to adopt him. He was ours, either way.
So who wants to see some pictures?
These crack me up because he looks incredibly annoyed to be bothered with taking some dumb pictures.
This boy seriously needs some mama love.
This one is my favorite. He looks so earnest. If you look closely at his left ear, you can see a little ear deformity. We don't know yet if it is just his outer ear that is affected, or if it extends into the canal and inner ear. Either way, he is perfection.
On Monday morning, I got up bright and early and emailed our agency. I said, if he is back on the shared list this morning, we want you to lock his file for us. And I sat and waited with my laptop on and my phone in my hand. I knew that if my email popped up first, she hadn't found him. But if the phone rang, he would be ours.
And the phone rang. Sure enough, Dana had found him. I gave her our full names, birthdates, etc., and listened to her type, entering the information into the website. And she locked him in.
You would think a person could just relax at that point, right? But no, that is when the real stress begins!
At that point I made a copy of his file, including a note outlining his known special needs, to be delivered to our local pediatrician, Dr. Q. I called our international adoption doctor, Dr. T, and then emailed his file to her. Then, I called Kate's audiologist, Dr. S, and discussed his hearing test in the file with her.
I would've called Kate's old SLP, Jennifer, but I had already called her the week before. When we couldn't find his file.
The audiologist told me that while he has pretty serious hearing loss in the left ear, it appears the right ear is much less serious. Perhaps he has excess fluid and infections because of the cleft, and his hearing in that ear can be somewhat restored.
Dr. Q's first comment to me was, "I can't find a single thing wrong with this kid. He is perfect for you." My response? Yes, we think so too.
With our 72 hour deadline approaching on Wednesday afternoon, we joyfully told Dana that we wanted to accept the referral.
Dr. T is usually very quick to get back with us with any sort of question, but for some reason she didn't get back to us until after our decision. When she did call, she basically agreed with Dr. Q. She then went on to express some concern that his height and weight are low (teeny, in fact), but his head is nice and big (heh), which means his brain is growing. She was also concerned that he is a bit anemic. Tim and I were both prepared for all of that, so while we are concerned for his nutrition, I knew it wouldn't stop us from adopting him. She was even less concerned about his hearing than we were. She felt like even if tubes don't improve his hearing, other procedures/devices probably will. She doesn't feel like he will be deaf. Not even close.
I told her I was really glad that her report was so positive, because we had already sent in the paperwork to adopt him. He was ours, either way.
So who wants to see some pictures?
These crack me up because he looks incredibly annoyed to be bothered with taking some dumb pictures.
This boy seriously needs some mama love.
This one is my favorite. He looks so earnest. If you look closely at his left ear, you can see a little ear deformity. We don't know yet if it is just his outer ear that is affected, or if it extends into the canal and inner ear. Either way, he is perfection.
Subscribe to:
Posts (Atom)