I am so sorry to hear this. I would keep looking because there may be another organization out there who will actually do what they are supposed to do and not allow judgement to enter into their service. I have had other parents judge so I realize how awful it can feel when you have to explain yourself to someone not walking in your shoes.

Let us know how it turns out and if you are able to get Sailor in another class somewhere else.

I am so sorry to hear this. I would keep looking because there may be another organization out there who will actually do what they are supposed to do and not allow judgement to enter into their service. I have had other parents judge so I realize how awful it can feel when you have to explain yourself to someone not walking in your shoes.

Let us know how it turns out and if you are able to get Sailor in another class somewhere else.

I am so sorry to hear this. I would keep looking because there may be another organization out there who will actually do what they are supposed to do and not allow judgement to enter into their service. I have had other parents judge so I realize how awful it can feel when you have to explain yourself to someone not walking in your shoes.

Let us know how it turns out and if you are able to get Sailor in another class somewhere else.

I am so sorry to hear this. I would keep looking because there may be another organization out there who will actually do what they are supposed to do and not allow judgement to enter into their service. I have had other parents judge so I realize how awful it can feel when you have to explain yourself to someone not walking in your shoes.

Let us know how it turns out and if you are able to get Sailor in another class somewhere else.

I am so sorry to hear this. I would keep looking because there may be another organization out there who will actually do what they are supposed to do and not allow judgement to enter into their service. I have had other parents judge so I realize how awful it can feel when you have to explain yourself to someone not walking in your shoes.

Let us know how it turns out and if you are able to get Sailor in another class somewhere else.

I am so sorry to hear this. I would keep looking because there may be another organization out there who will actually do what they are supposed to do and not allow judgement to enter into their service. I have had other parents judge so I realize how awful it can feel when you have to explain yourself to someone not walking in your shoes.

Let us know how it turns out and if you are able to get Sailor in another class somewhere else.

Hello! I agree w both Gretchen and Delia. I believe that you will find the right , compassionate instructor in time.

There are always judgemental , non compassionate people out there. We can't change the outside world ; we can keep on going forward and follow our intuitive sense to do what we feel is right.One thing I would suggest is to limit indoor pools; this is a recommendation for patients w NTM/ Bronchiectasis. Outdoor pools are much less of a concern . I wish you and Sailor the best. She deserves to enjoy the summer fun.

I can only imagine how you felt after that message. So sorry to hear. I agree with Gretchen--I would keep searching for an organization that is willing to do what they claim. Maybe even a private instructor? I tend to look up Google reviews whenever I'm looking for a service... It might help in determining if the service provider is the right fit for what you want/need. Also, have you tried recommendations from a local school or community center? That might help too. Hope little Sailor is doing okay!

I can only imagine how you felt after that message. So sorry to hear. I agree with Gretchen--I would keep searching for an organization that is willing to do what they claim. Maybe even a private instructor? I tend to look up Google reviews whenever I'm looking for a service... It might help in determining if the service provider is the right fit for what you want/need. Also, have you tried recommendations from a local school or community center? That might help too. Hope little Sailor is doing okay!

I can only imagine how you felt after that message. So sorry to hear. I agree with Gretchen--I would keep searching for an organization that is willing to do what they claim. Maybe even a private instructor? I tend to look up Google reviews whenever I'm looking for a service... It might help in determining if the service provider is the right fit for what you want/need. Also, have you tried recommendations from a local school or community center? That might help too. Hope little Sailor is doing okay!

I can only imagine how you felt after that message. So sorry to hear. I agree with Gretchen--I would keep searching for an organization that is willing to do what they claim. Maybe even a private instructor? I tend to look up Google reviews whenever I'm looking for a service... It might help in determining if the service provider is the right fit for what you want/need. Also, have you tried recommendations from a local school or community center? That might help too. Hope little Sailor is doing okay!

I can only imagine how you felt after that message. So sorry to hear. I agree with Gretchen--I would keep searching for an organization that is willing to do what they claim. Maybe even a private instructor? I tend to look up Google reviews whenever I'm looking for a service... It might help in determining if the service provider is the right fit for what you want/need. Also, have you tried recommendations from a local school or community center? That might help too. Hope little Sailor is doing okay!

I can only imagine how you felt after that message. So sorry to hear. I agree with Gretchen--I would keep searching for an organization that is willing to do what they claim. Maybe even a private instructor? I tend to look up Google reviews whenever I'm looking for a service... It might help in determining if the service provider is the right fit for what you want/need. Also, have you tried recommendations from a local school or community center? That might help too. Hope little Sailor is doing okay!

Thank you all for the kind words and encouragement. Unfortunately, I have contacted several companies and private instructors about getting some help, and they have all said basically the same thing. Apparently she is a liability they cannot afford to undertake. I guess the night I received that first response it was kind of the the straw that broke the camel's back. Lately she has had it rough with the heat and humidity and new specialists, testing, increased therapy(which was a huge fight with insurance), and more and more antibiotics, being told not only does she have a significant expressive speech delay but also and comprehensive cognitive delay. Since none of her specialists can figure out the cause of all her many health issues including the Bronchiectasis, they decided to send us to a Neurologist to possibly get some clarity. The neurologist did not give us a great first impression....first off she was 12( lol, normally not an issue but for some reason her attitude and vocabulary rubbed me the wrong way), she didn't really even administer a full neurological exam and said she looked completely "Normal", which of course sent me over the edge, when I asked about her delays and neurological ticks and all the health issues and if they could all be connected somehow, she said she just wasnt getting that "flavor" from her. But, if there was an issue it was probably the shape of her brain or the way it was formed and if that was the case there was nothing they could do about it. It took everything in me not to fly into a huge ball of rage at her. She scheduled an EEG and MRI and we just left. Then the next day we saw her pulmonologist and she has decided that she needs to be on Azythromycin at least 3 times a week, which makes me nervous because we were told by NIH to be very cautious with that drug due to hearing loss, which is already a concern. But before we could discuss that there was a fire in the clinic (5th floor) so we had to evacuate.

I know I am just blathering on and having my own little pitty party, but sometimes it is just too much. I hate seeing her being a human pin cushion. I hate that she has to deal with all of this and the fact I cannot take the pain and stress away from her. I know this is not something that will go away but I guess it all hit me at once that This is her life now and she will have difficulties that come and go. I just don't want her to grow up thinking it is ok to put limitations on her life. I have strived to teach all my children that anything and everything is possible with hard work, determination and God! Just having a really hard time dealing! Sorry for the rant!

Hello! Please do not be sorry for what you called the rant. You have every right to have these feelings and express these feelings.

It is overwhelming to say the least. Yes, when u r in this predicament - it just takes one more straw on the camels back to set us off.

It is so frustrating when you cannot make the change u desire to accomplish; feeling powerless and helpless in some ways is so so difficult to accept.

I guess it is best to keep her out if the heat, humidity , pool at this time if she is starting antibiotics.

Please keep us posted.

I taught my babies how to blow bubbles and swim without drinking the water or aspirating when they were your daughter's age. You might even try blowing bubbles with a glass to begin. Of course in the tub and be ready for her to blow bubbles in her cup of milk too. Go to the library or probably on you tube now and look for teaching babies to swim. I have non cf Bronchiectasis and have been told and do outdoor swimming just not indoor.

Try a Shriners Hospital for help or a children's hospital as they often use water therapy. If I lived in Texas and you wanted me to teach her to swim I would do it for you liability be darned.

I hear you about the azthromycin and hearing. As soon understand it no one can predict with certainty when and how much of a drug will impact hearing, we only know from experience and then we have to weigh the risks of not taking an antibiotic against side effects of antibiotics. Did NIH have a recommendation of another antibiotic instead of azthromycin? The road you are on with Sailor is challenging in every aspect so try to spend as much time with joy to keep your good feeling cup as full as possible so the bad parts don't deplete it. When it is your baby you need to rant and this is a great place to do it. Keep up the great work you are doing to protect your daughter's normal activities and don't give up,we have your back.

My dr did tell me about zpak and hearing. I had asked for it and he said no but then when he found out my right ear is gone completely he did put me on zpak 3 days a week dose 250 mg . Also you have to watch the heart numbers. I get a EKG every time I see my pulmo due to zpak affecting the heart. I did get a hearing aid for the right ear but can't stand it. Been back to the hearing ppl just not working right. They control the hearing aid by computer system.

So sorry to hear this very hurtful to have said that to you.

So sorry to hear this very hurtful to have said that to you.

So sorry to hear this very hurtful to have said that to you.

So sorry to hear this very hurtful to have said that to you.

So sorry to hear this very hurtful to have said that to you.

So sorry to hear this very hurtful to have said that to you.