I know I haven't updated in a while. It has been difficult with two kids, especially since both have many special needs.
My baby is now 5 months (can't believe we are almost at half a year old). Her weight and height have caught up almost to the norm, though she still has a tiny head (common with the genetic syndromes).
She just learned how to roll from belly to back last weekend. I was shocked she learned this so quickly since for this whole time she has been a pretty immobile baby when placed anywhere (she still is). Of course this new found skill has made her naps horrible since she is so used to napping on her belly and now whenever she is on her belly she rolls over and can't get back to her belly. This then leads her to getting overtired and a long crying spell. On the days she does stay on her belly though she still naps a ton. Seriously there were some days last week where she slept at least 18 hours a day. Not sure if this is a good or bad thing, but totally different than dd1. At night she has been going 10:30-6 for months.
She also just started to really smile, not just doing the open mouth look that she has been doing for over a month, but now some real grins, and if I am real lucky I might get a few coos too. Still no laughing though.
One of my biggest worries right now is with her hearing since she was so delayed in language and social skills. She doesn't turn her head if I make noise out of her sight, even if it is a very loud noise. I have an appointment to get her hearing checked, but unfortunately it won't be for another 2 months because the place claims she has to be a certain age first. Don't understand this, but I guess since she passed her newborn screen they don't care to retest her just yet.
We go next Thursday to see a development pedi. I am glad we were able to get in so quickly. I am hoping this new doctor will be able to help us get services and help throughout dd2's childhood years. Right now she only gets EI once a month and even then her therapist has cancelled and rescheduled more times than not. Sometimes I think that they don't care since she is a baby and that they are limited in what they can do with her so they give her the short end of the stick.
DD1 is also getting therapy every week, which is especially needed now since she is out of school for the summer (something I still don't think should have happened giving that I have seen her regress when she was without ST for a month a year ago when she was in EI). Unfortunately her therapy hasn't been going very well and she has now become terrified when she is there. I don't know what happened and since dd1 doesn't have the communication skills yet like she should as an almost 3.5 year old she can't tell us what she is so upset about. It is getting to the point that I may have to make a decision of pulling her out of there, something I don't want to do because then she will get no therapy, but right now it is pretty useless since she is petrified whenever she is there so not getting anything out of the sessions.
We are also taking dd1 to a neurologist in Boston next week since her SLP thinks she may be having absent seizures. I don't know whether to believe it or not since everything that is currently happening with her therapy, but since there is a 1/3 chance of seizures with her deletion it is good to get her examined. DH also had seizures, though him and his mother refuse to blame it on the deletion, claiming it was because of the PDA surgery (ya right, I don't think so. Just like her doctors told her that dh and his brother's pinkies were curved because her uterus was too small. Well that was quickly disproven after I gave birth and we saw dd1 in the nicu with her pinkies severely curved).
Tuesday, July 23, 2013
Friday, May 24, 2013
A name
We met with the facial doctor today in Boston. After dealing with insurance hassle for the last number of weeks and being denied our request to go to Childrens, the pedi told us to try Tufts since they don't require any referral. Of course MIL wasn't happy about this news. She said she took dh there first when he was little and they wanted to do experimental surgeries on him. I told her that likely things have changed in the last 35 years (well I would hope they would have) and that we had no choice since I am not paying out of pocket for her to be seen at Children's. Personally I prefer Children's too since I hate driving to Tufts even more than I hate driving to Children's, but it isn't worth paying thousands of dollars though.
It was bad traffic going into Boston (even though it was midday) thanks to the left lane being closed. So it took us an hour and a half and then we had to wait an hour after our appointment time for the doctor to enter. All this made dh mad, but I told him this is what you have to deal with when seeing specialists. He doesn't know because he didn't come to all of dd1's appointments. I know if I am going to Boston it is an all day affair.
Chloe was also not very happy either because for 2 days now in a row she had to have doctor appointments and that meant no sleeping on her mat on the floor. Yesterday she had her renal u/s which thank goodness that was all normal. It is good because we already had to deal with all that with Caitlyn and Chloe has already gotten enough of the short end of the stick medical wise already.
I showed the doctor dh's childhood pictures and talked about his surgeries (which we only knew very limited about since dh was too little to remember much and I only get the 2nd hand account from his mother). We are lucky though that we do have his history to know that there is something abnormal there with the baby and to push for treatment.
The doctor says that she has a form of Binder's syndrome. Basically the main characteristic is a lack of nasal bone and that is the case for her and dh. This causes the nose to be broad and flat. Reading online it also says that the columella (this is the middle part between the nostrils which MIL says is the main problem with dh) is short and also the mouth is slanted downward. At first I thought no her mouth isn't downward, it is pulled up, but then I recalled the baby picture of dh that is the same face as the baby and the upside down U mouth and I can see what they are talking about.
The good news is that Binder's syndrome seems to only be a facial cosmetic problem - it doesn't appear to cause other issues beside the nose and upper jaw. The bad news is that she faces surgery (likely many) to correct things and if things aren't fixed by kindergarten age there is also the bullying factor as well. There is also the concern of this coming out in future generations since we know with her it is genetic. This I feel the worst about. Knowing that my grandkids may also face the same problem.
Right now though we are just playing things by ear. The doctor said it is up to us when we want to decide to correct it, but it is best to wait longer and do less surgeries. We go back at the end of September and then it will likely be check ups every 6 months after that.
It was bad traffic going into Boston (even though it was midday) thanks to the left lane being closed. So it took us an hour and a half and then we had to wait an hour after our appointment time for the doctor to enter. All this made dh mad, but I told him this is what you have to deal with when seeing specialists. He doesn't know because he didn't come to all of dd1's appointments. I know if I am going to Boston it is an all day affair.
Chloe was also not very happy either because for 2 days now in a row she had to have doctor appointments and that meant no sleeping on her mat on the floor. Yesterday she had her renal u/s which thank goodness that was all normal. It is good because we already had to deal with all that with Caitlyn and Chloe has already gotten enough of the short end of the stick medical wise already.
I showed the doctor dh's childhood pictures and talked about his surgeries (which we only knew very limited about since dh was too little to remember much and I only get the 2nd hand account from his mother). We are lucky though that we do have his history to know that there is something abnormal there with the baby and to push for treatment.
The doctor says that she has a form of Binder's syndrome. Basically the main characteristic is a lack of nasal bone and that is the case for her and dh. This causes the nose to be broad and flat. Reading online it also says that the columella (this is the middle part between the nostrils which MIL says is the main problem with dh) is short and also the mouth is slanted downward. At first I thought no her mouth isn't downward, it is pulled up, but then I recalled the baby picture of dh that is the same face as the baby and the upside down U mouth and I can see what they are talking about.
The good news is that Binder's syndrome seems to only be a facial cosmetic problem - it doesn't appear to cause other issues beside the nose and upper jaw. The bad news is that she faces surgery (likely many) to correct things and if things aren't fixed by kindergarten age there is also the bullying factor as well. There is also the concern of this coming out in future generations since we know with her it is genetic. This I feel the worst about. Knowing that my grandkids may also face the same problem.
Right now though we are just playing things by ear. The doctor said it is up to us when we want to decide to correct it, but it is best to wait longer and do less surgeries. We go back at the end of September and then it will likely be check ups every 6 months after that.
Monday, May 13, 2013
cardiology follow up and mystery caller
So dd2 had her post surgery check up today at the heart center. Her ekg and echo were much better. It was nice being there without the constant worry about her. She weighed in at 4.5 kg and still 22 inches (so weight gain is slow, but steady). I am no longer doing the increased calorie diet since it was such a pain to make up.
Unfortunately we couldn't get all good news. There is still a small left over PDA (not sure how that happened since they did surgery), but it is not ausctible so the doctor doesn't believe it will cause her any problems. Also there is some aortic valve regurg. He thinks it is because the left ventricular was enlarged due to the PDA and the hope that this will go back to normal eventually. We go back in 4 months with the plan to slowly extend the time between visits until she can finally be discharged.
On other news, I decided to write a note to dd1's school explaining about the cop visit and asking them to contact us the next time they are concerned about something instead of the cops. Well after her class ended I got a call from her teacher telling me no one at the school contacted anyone about dd1's ear except us to pick her up those 2 days and that they are as shocked as us about the police visit. So now I am left with trying to figure out who called on us. It had to be someone who saw dd1 in the past 2 weeks and also knows her age, our address, and the fact she goes out with FIL. I am at a complete loss and it is really bugging me. I also would like to know so I can explain to the person that her medical needs are being taken care of. I feel bad that we blamed the teacher by sending the letter, but really it was the most logical choice.
Unfortunately we couldn't get all good news. There is still a small left over PDA (not sure how that happened since they did surgery), but it is not ausctible so the doctor doesn't believe it will cause her any problems. Also there is some aortic valve regurg. He thinks it is because the left ventricular was enlarged due to the PDA and the hope that this will go back to normal eventually. We go back in 4 months with the plan to slowly extend the time between visits until she can finally be discharged.
On other news, I decided to write a note to dd1's school explaining about the cop visit and asking them to contact us the next time they are concerned about something instead of the cops. Well after her class ended I got a call from her teacher telling me no one at the school contacted anyone about dd1's ear except us to pick her up those 2 days and that they are as shocked as us about the police visit. So now I am left with trying to figure out who called on us. It had to be someone who saw dd1 in the past 2 weeks and also knows her age, our address, and the fact she goes out with FIL. I am at a complete loss and it is really bugging me. I also would like to know so I can explain to the person that her medical needs are being taken care of. I feel bad that we blamed the teacher by sending the letter, but really it was the most logical choice.
Thursday, May 9, 2013
Diaper saga continues
So I have been dealing with problems getting dd1 diapers since she turned 3 in March. Masshealth will pay for diapers once a child is 3, so I had been waiting for that moment. The day after her birthday dd2 had a doctor's appt so I asked the doctor to write a script for diapers, which she did.
Unfortunately turns out that the doctor also has to write a letter of medical necessary to the insurance and then wait for insurance approval so the doctor's note alone was pretty useless to me.
I returned at the end of March with both kids in toll for their checkups and told the doctor this. The next day I spoke with the nurse who said she got everything all set and sent the script off to the pharmacy. Then I waited.
I knew insurance approval took almost a month so I didn't expect to hear anything for a while. 5 weeks past and dd2 finally went back for her 2 month check up. I asked the doctor what was going on with the diaper order since it had now been 2 months since dd1's 3rd birthday. They said they sent it to a pharmacy called Denmark and gave me the number to call saying once they send it to the pharmacy it is out of their hands.
So I go home planning on calling in a few days, but decided to call that day. Luckily I did, the lady on the phone said that they don't supply diapers and that was that. Now I was really raging. I had been waiting for 5 weeks for insurance approval for diapers that never was. I called back the doctor and told them this. They then wanted me to call the insurance to see what pharmacy they deal with. I am annoyed that I have to do all the leg work and wonder why they don't know what they are doing. She clearly can't be the only kid in the practice on Masshealth and still in diapers.
The insurance told me that the doctor needs to contact medical management and that there was no record of a diaper order being sent to them. I call back the doctors office again for the millionth time and had to continue to wait to speak with the particular nurse that I have been dealing with (for some reason it always ends up being the wrong nurse answering the phone and then it is back on hold I go). By this point I am beyond pissed. I tell the nurse all this and she asks for the insurance number. The next day I get a call saying they sent the stuff to Allcare pharmacy. The good news is this pharmacy has on their website all the steps in the process (wish I would have saw this 2 months ago) and does all the work of contacting the insurance, etc. That was last Thursday.
Tuesday I get a call from the Allcare rep saying they got the doctor's stuff and am sending to the insurance for approval and it takes 14 business days. I thought finally things are starting to happen and in a few weeks I should finally have diapers for dd1.
Well, today (2 days later) everything took a huge 180 degree turn when fedex showed up with 2 boxes addressed to dd1. I thought to myself who sent something to dd1. I open it up and it is 5 packs of diapers! Only problem is it is size 5 and the script was for size 6 (which also are on the tight side so size 5 would definitely not work). I think to myself, wow that is fast, they just got the order last week and sent it to the insurance 2 days ago. Only thing that was confusing was the name on the package was from a totally different place that I had never heard of before.
So I call up Allcare to tell them about the wrong size. They are shocked I got diapers all ready and said that it wasn't from them. They also said that insurance wouldn't approve of 2 pharmacies sending her diapers so now I have an even bigger problem then just a wrong size to deal with.
So I call the number on the script which is in New Jersey. The person who answers asks me where I am located. I say MA, she then transferred me to another company (name unknown), who later tells me they don't know why I got transferred to them since they just handle Rhode Island. Okay so now nobody knows what they are doing. The women said she doesn't know why they sent out 5 packages, saying they usually only send out one the first time to make sure the fit is right. She then said she will send out a size 6 and I should get it in 2-3 business days and will send a label for me to return the 5 size 5 packages (I was hoping she would say just keep them, but I guess not).
So there you have it, I should get a pack of diapers by early next week. Of course, this still leaves the issue about the order from Allcare. The diapers from this company is genetic brand, whereas Allcare said they send out name brand diapers. Of course that involves stopping the order from this pharmacy and praying that insurance doesn't screw up which I don't really want to risk. Seriously as long as the diapers work I don't care for name brand, though it would be nice to get for reward points though. Also the other thing what I don't understand is that the insurance said they never didn't have any record of any order as of last week when I called them so I don't even know if the insurance is even aware or not.
Unfortunately turns out that the doctor also has to write a letter of medical necessary to the insurance and then wait for insurance approval so the doctor's note alone was pretty useless to me.
I returned at the end of March with both kids in toll for their checkups and told the doctor this. The next day I spoke with the nurse who said she got everything all set and sent the script off to the pharmacy. Then I waited.
I knew insurance approval took almost a month so I didn't expect to hear anything for a while. 5 weeks past and dd2 finally went back for her 2 month check up. I asked the doctor what was going on with the diaper order since it had now been 2 months since dd1's 3rd birthday. They said they sent it to a pharmacy called Denmark and gave me the number to call saying once they send it to the pharmacy it is out of their hands.
So I go home planning on calling in a few days, but decided to call that day. Luckily I did, the lady on the phone said that they don't supply diapers and that was that. Now I was really raging. I had been waiting for 5 weeks for insurance approval for diapers that never was. I called back the doctor and told them this. They then wanted me to call the insurance to see what pharmacy they deal with. I am annoyed that I have to do all the leg work and wonder why they don't know what they are doing. She clearly can't be the only kid in the practice on Masshealth and still in diapers.
The insurance told me that the doctor needs to contact medical management and that there was no record of a diaper order being sent to them. I call back the doctors office again for the millionth time and had to continue to wait to speak with the particular nurse that I have been dealing with (for some reason it always ends up being the wrong nurse answering the phone and then it is back on hold I go). By this point I am beyond pissed. I tell the nurse all this and she asks for the insurance number. The next day I get a call saying they sent the stuff to Allcare pharmacy. The good news is this pharmacy has on their website all the steps in the process (wish I would have saw this 2 months ago) and does all the work of contacting the insurance, etc. That was last Thursday.
Tuesday I get a call from the Allcare rep saying they got the doctor's stuff and am sending to the insurance for approval and it takes 14 business days. I thought finally things are starting to happen and in a few weeks I should finally have diapers for dd1.
Well, today (2 days later) everything took a huge 180 degree turn when fedex showed up with 2 boxes addressed to dd1. I thought to myself who sent something to dd1. I open it up and it is 5 packs of diapers! Only problem is it is size 5 and the script was for size 6 (which also are on the tight side so size 5 would definitely not work). I think to myself, wow that is fast, they just got the order last week and sent it to the insurance 2 days ago. Only thing that was confusing was the name on the package was from a totally different place that I had never heard of before.
So I call up Allcare to tell them about the wrong size. They are shocked I got diapers all ready and said that it wasn't from them. They also said that insurance wouldn't approve of 2 pharmacies sending her diapers so now I have an even bigger problem then just a wrong size to deal with.
So I call the number on the script which is in New Jersey. The person who answers asks me where I am located. I say MA, she then transferred me to another company (name unknown), who later tells me they don't know why I got transferred to them since they just handle Rhode Island. Okay so now nobody knows what they are doing. The women said she doesn't know why they sent out 5 packages, saying they usually only send out one the first time to make sure the fit is right. She then said she will send out a size 6 and I should get it in 2-3 business days and will send a label for me to return the 5 size 5 packages (I was hoping she would say just keep them, but I guess not).
So there you have it, I should get a pack of diapers by early next week. Of course, this still leaves the issue about the order from Allcare. The diapers from this company is genetic brand, whereas Allcare said they send out name brand diapers. Of course that involves stopping the order from this pharmacy and praying that insurance doesn't screw up which I don't really want to risk. Seriously as long as the diapers work I don't care for name brand, though it would be nice to get for reward points though. Also the other thing what I don't understand is that the insurance said they never didn't have any record of any order as of last week when I called them so I don't even know if the insurance is even aware or not.
Wednesday, May 8, 2013
past week update
A lot has been going on. It is funny how I thought my life was so busy with dd1 when she was a baby, but now having two is a whole other story.
First dd1 - developed her first ear infection last Monday. At first I thought she had just got something sticky in her hair, but when she got sent home from school the next day I realized that no, it wasn't anything she had put in her hair, but discharge coming out of her ear. Unfortunately this has led to a constant battle with her and me constantly bugging doctors on how to treat her. The nurse last Tuesday put her on ear drops. I called Wednesday morning after trying twice to get the drops in her ear with no luck to change to an oral med. They put her on Augmentum (horrible nasty stuff in liquid form as any vet would tell). Ya, that didn't go well so when I saw the doctor on Thursday for dd2's appointment I had her switch it to amoxicillin. I was hoping with it having a better taste dd1 would take it, but nope she spit it out just like the augmentum. So I then looked up online and found I can put it stuff so I put it in her juice or milk and this worked for a few days (sometimes too well - she wanted 2nds after finishing the drink), but then again she refused to take the meds.
Monday she returned to school, even though her ear was still draining, but she was physically fine. She did get a cold from Thursday-Saturday which she managed to give to FIL and then me so I have been battling it this week. On Tuesday the school called again about her ear discharge and said she had to be picked up. Don't know why they didn't have a problem with it on Monday. I figured I can't keep having this happen so I called the pedi office who said to call the ENT, so that afternoon FIL took her to the ENT. An hour later he calls me and says the ENT says she has to see the pedi and I need to give the pedi authorization for him to take her, which I did since I was too sick to get out of bed yesterday. They finally came home 90 minutes later, saying she got 2 shots in her legs to cover her dose for the next 24 hours and to try putting the amoxicillin in chocolate frosting tomorrow night.
I was praying this was the end of this, but then this morning a cop shows up at the door. FIL had taken dd1 out to the library and park and I thought something had happened to her when she starts questioning me if I have a 3 year old girl. She then says DCFS called her and I ask if it has to do about her ear and she said yes. I then tried to explain to her about how it is being treated and she has seen so far 3 medical professionals about it in the past week. At that moment FIL and dd1 come home and dd1 is covered in chocolate all over her mouth and pants. I about died. The cop then asked to look at her ear, which hadn't been cleaned recently since I have been sick so it still had the died bloody discharge. I then try to explain how this is normal with ear tubes when there is an infection. So then asked for my number to give to cps so guess who is likely going to get a call from them to come check up on us again. I feel September is repeating itself.
Now on with dd2. My May has basically been now filled up with appointments for her. She was suppose to have a renal u/s tomorrow, but the hospital just called me this morning to say I need prior authorization first since it is out of network in Rhode Island. I am really starting to hate Network Health. We can't see the geneticist anymore since the insurance has refused to grant any more follow ups. Luckily dd1 geneticist is in MA so it was easy to fix that problem, though left the doctor feeling horrible about the situation. But because of this I am reluctant to go to RI anymore for any treatment . So now her u/s is moved to the 23rd since we need time to get the authorization.
Then on Monday she goes back to the Cardiologist. I am curious how her heart looks now. She is eating much better - up to 4oz every 3-4 hours and is no longer doing that horrible heart failure cough.
Developmentally though I am concerned about her. She is still very much like a newborn - not meeting any milestones yet and just eats and sleeps all the time. EI is coming next Thursday to finish the 2nd half of her intake and then they will do a service plan and schedule.
The following Monday we have to take her up to Waltham for her cranial facial eval. I am surprised we got an appointment so quick - they actually had an opening for this Monday, but we can't because of the cardiologist appointment. I hate how we have to travel so far, but can't risk calling Hasbro and dealing with these insurance issues anymore, so Boston it is. Good news is is it is the chief of surgery who we will be seeing so the doctor seems to one of the big shots so hopefully we can get some definite answers of what is wrong with her and what to do about it. It is probably a good thing because you know what your stuff you would think there is nothing wrong with her face, but us family members know that there is something there that isn't right. I know it is nothing urgent, but would like it corrected by the time she starts school fulltime.
First dd1 - developed her first ear infection last Monday. At first I thought she had just got something sticky in her hair, but when she got sent home from school the next day I realized that no, it wasn't anything she had put in her hair, but discharge coming out of her ear. Unfortunately this has led to a constant battle with her and me constantly bugging doctors on how to treat her. The nurse last Tuesday put her on ear drops. I called Wednesday morning after trying twice to get the drops in her ear with no luck to change to an oral med. They put her on Augmentum (horrible nasty stuff in liquid form as any vet would tell). Ya, that didn't go well so when I saw the doctor on Thursday for dd2's appointment I had her switch it to amoxicillin. I was hoping with it having a better taste dd1 would take it, but nope she spit it out just like the augmentum. So I then looked up online and found I can put it stuff so I put it in her juice or milk and this worked for a few days (sometimes too well - she wanted 2nds after finishing the drink), but then again she refused to take the meds.
Monday she returned to school, even though her ear was still draining, but she was physically fine. She did get a cold from Thursday-Saturday which she managed to give to FIL and then me so I have been battling it this week. On Tuesday the school called again about her ear discharge and said she had to be picked up. Don't know why they didn't have a problem with it on Monday. I figured I can't keep having this happen so I called the pedi office who said to call the ENT, so that afternoon FIL took her to the ENT. An hour later he calls me and says the ENT says she has to see the pedi and I need to give the pedi authorization for him to take her, which I did since I was too sick to get out of bed yesterday. They finally came home 90 minutes later, saying she got 2 shots in her legs to cover her dose for the next 24 hours and to try putting the amoxicillin in chocolate frosting tomorrow night.
I was praying this was the end of this, but then this morning a cop shows up at the door. FIL had taken dd1 out to the library and park and I thought something had happened to her when she starts questioning me if I have a 3 year old girl. She then says DCFS called her and I ask if it has to do about her ear and she said yes. I then tried to explain to her about how it is being treated and she has seen so far 3 medical professionals about it in the past week. At that moment FIL and dd1 come home and dd1 is covered in chocolate all over her mouth and pants. I about died. The cop then asked to look at her ear, which hadn't been cleaned recently since I have been sick so it still had the died bloody discharge. I then try to explain how this is normal with ear tubes when there is an infection. So then asked for my number to give to cps so guess who is likely going to get a call from them to come check up on us again. I feel September is repeating itself.
Now on with dd2. My May has basically been now filled up with appointments for her. She was suppose to have a renal u/s tomorrow, but the hospital just called me this morning to say I need prior authorization first since it is out of network in Rhode Island. I am really starting to hate Network Health. We can't see the geneticist anymore since the insurance has refused to grant any more follow ups. Luckily dd1 geneticist is in MA so it was easy to fix that problem, though left the doctor feeling horrible about the situation. But because of this I am reluctant to go to RI anymore for any treatment . So now her u/s is moved to the 23rd since we need time to get the authorization.
Then on Monday she goes back to the Cardiologist. I am curious how her heart looks now. She is eating much better - up to 4oz every 3-4 hours and is no longer doing that horrible heart failure cough.
Developmentally though I am concerned about her. She is still very much like a newborn - not meeting any milestones yet and just eats and sleeps all the time. EI is coming next Thursday to finish the 2nd half of her intake and then they will do a service plan and schedule.
The following Monday we have to take her up to Waltham for her cranial facial eval. I am surprised we got an appointment so quick - they actually had an opening for this Monday, but we can't because of the cardiologist appointment. I hate how we have to travel so far, but can't risk calling Hasbro and dealing with these insurance issues anymore, so Boston it is. Good news is is it is the chief of surgery who we will be seeing so the doctor seems to one of the big shots so hopefully we can get some definite answers of what is wrong with her and what to do about it. It is probably a good thing because you know what your stuff you would think there is nothing wrong with her face, but us family members know that there is something there that isn't right. I know it is nothing urgent, but would like it corrected by the time she starts school fulltime.
Tuesday, April 30, 2013
Genetic appointment
Yesterday the baby had her genetic appointment and we got the results of her microassay that was taken right after she was born. She had a 50% of getting either of our bad chromosomes, 25% of getting both, and 25% of getting neither. Unfortunately she fell into the 25% chance of inheriting both. They still have my duplication as listed as unknown significance (probably because I - and now dd2 - may be the only people with it) so the doctor doesn't think it is important, but dh's chromosome 6 deletion is now listed as pathological known to cause development delay and other health problems. Of course neither dh nor his mother like to believe this despite me showing them the literature. She thinks since there isn't a nice sounding "syndrome" name like our nephew has then it means nothing. That upsets me because it basically makes like all the therapy I have been getting for dd1 and dd2 medical problems seem like nothing. I understand that she doesn't want to admit that there is a problem from her side of the family, but the fact is there is and denying that the deletion doesn't cause problems doesn't help anything. I mean the baby isn't even 10 weeks old yet and has already went through one surgery with likely many more to follow. She is also already developmentally delayed, though I don't know if it is related to the heart failure or the deletion. Anyways I am not taking any chances and have left a message with EI to make an appointment to get her evaluated. The genetisit also wants her to have a renal u/s since enlarged kidneys is common with the deletion. DD1 had that problem, though it was picked up at the anatomy scan. I think back to the anatomy scan I had with this pregnancy and all I recall is the doctor's words that she is perfect, there is nothing wrong. I can't believe that just 6 months later my baby was in CHF and undergoing cardiac surgery.
Friday, April 26, 2013
Day after surgery
We were lucky to avoid the ICU and be sent straight to the floor and I found out the ICU nurse who gave the tour was wrong. You can use cellphones in the room, just not use it to make calls. So I was relieved since I brought no other firm of entertainment. I did break the no cell call rule though by accident once because I forgot and luckily because I need to catch dh quickly. He had just left when I remembered we didn't take the bottle stuff out if the car.
The only bad thing is that the rooms are shared. When we first got in the room there was no one else so I was hoping it would stay that way, but unfortunately a few hours later I say that a name got placed on the door and by evening another baby got put in here. Of course the whole family was there when it arrived and the mother doesn't even speak English. I guess that is both good and bad. I won't be talking to her and I can talk about her and she won't know. I couldn't wait until 8pm when visiting hours ended so the rest of them would leave. However it just got worse at night. The pull out chair they make people sleep on is horrible (seriously I think the tile floor would have been better), but the worst was the freaking baby beside us that wouldn't stop crying and babbling. It is one thing listening to your baby, but another persons. I was lucky I was dead tired from not sleeping for 2 nights or else I wouldn't get a wink of sleep. I am lucky Chloe is a quiet baby. I would die if I had that kid for a child. And she wasn't even young like Chloe is, but 7 months old. By that age a baby should be sleeping through the night but no it was crying at 12, 3, 5 in the morning and maybe even more but I was to tired to notice.
The only bad thing is that the rooms are shared. When we first got in the room there was no one else so I was hoping it would stay that way, but unfortunately a few hours later I say that a name got placed on the door and by evening another baby got put in here. Of course the whole family was there when it arrived and the mother doesn't even speak English. I guess that is both good and bad. I won't be talking to her and I can talk about her and she won't know. I couldn't wait until 8pm when visiting hours ended so the rest of them would leave. However it just got worse at night. The pull out chair they make people sleep on is horrible (seriously I think the tile floor would have been better), but the worst was the freaking baby beside us that wouldn't stop crying and babbling. It is one thing listening to your baby, but another persons. I was lucky I was dead tired from not sleeping for 2 nights or else I wouldn't get a wink of sleep. I am lucky Chloe is a quiet baby. I would die if I had that kid for a child. And she wasn't even young like Chloe is, but 7 months old. By that age a baby should be sleeping through the night but no it was crying at 12, 3, 5 in the morning and maybe even more but I was to tired to notice.
Subscribe to:
Posts (Atom)