Post by TrudyCampbell on Aug 7, 2013 11:06:17 GMT -5
This is a lot to read, sorry!
Sooo we just met with our new speech therapist and she was really great. She is not through EI, we are using a private person until our EI services kick in and then even when they do kick in we'll probably supplement with this private lady because they never give us enough.
She wants to do at least 3 times a week which is great and we're totally on board with. It's $160 a session though so this is not helping our "save money and buy a giant house outside of NYC" plan. But she thinks she can really kickstart Violet's communication and we want to do everything we can.
We also are hiring a patient advocate to help us navigate EI and get more services. This has been recommended by a few people to us now and it will hopefully pay off if we get more free services.
We have also been talking about supplementing PT and OT because Violet only gets 30 min of each once a week and that is not nearly enough. The speech therapist recommended we do this as well because core strength and learning to walk are such a huge part of speech. So we're contacting a few physical therapy gyms and we'll hopefully do an additional PT and OT session every week (and we will be paying out of pocket for those).
So that's PT twice a week, OT twice a week, and speech three times a week. 7 therapy appointments in every mon-fri period. And we take a music class on Thurs mornings. And when we're not doing actual therapy sessions I have to be working on this stuff. It is SO MUCH to focus on. I am overwhelmed thinking of how I am going to balance it all.
We also have a neurologist appt coming up, we're seeing a geneticist in October, and the speech therapist is giving us the name of a developmental pediatrician in our area who she thinks can get us in right away.
Oh, and did I mention that I am pregnant? I have so many appointments coming up for the pregnancy and it's going to be so hard to fit them in around Violet's therapy schedule. And we have NO ONE to help us... every time I need to go to an appointment my husband needs to take off from work or work from home to watch her, which again takes away from our savings because my husband isn't working as much and the more he works the more he makes (he works in sales).
All I want to be doing these days is laying on my couch and vomiting and napping because I feel so sick from the pregnancy. I just want to be able to give Violet the best chance at everything and I feel like I'm not being the best mom right now. I need some hair pats.
You are an AMAZING mom! Reread what you just wrote about how you're taking V to 7 therapy sessions a week. You're doing such a wonderful job and just think about all the progress she's made physically the last several months. Hugs and hair pats for you!
2. You're doing everything you possibly can for Violet, I know you are! You're a great mom, and being sick and pregnant doesn't change that. Would it help to make a schedule of stuff you need to do?
3. I can help out any way you need me to. I can come over with Jamie and watch Violet while you go to pregnancy appointments
Post by Faevantastic on Aug 7, 2013 11:10:55 GMT -5
Oh hush on the last part. Sounds like you're doing above and beyond for V. It does sound overwhelming though. Hope it gets easier once you fall into the routine. You are super mama!
Lots of hair pats for you! That is a lot to take on for anyone let along with you being pregnant. You guys are going above and beyond what is "covered" to give V the best help she can get, you are an awesome mom!
I was literally going to post asking you about the private speech appintment. Oh man lady love, you've got a full plate and I'm so sorry you are juggling it all while KU. Your dedication to continuing to do what is best for Violet is commendable- you are a force to be reckoned with! Can all these appointments be scheduled at the same time, same day each week? That will definitely help keep things organized. Are you looking into PT gyms in Brooklyn? I'm going to guess that less commuting will make your life a hell of a lot easier. I wish I was back home to help you!! Ugghhhh hang in there. You can and WILL do this!
Oh Trudy, you are an awesome mom. You are so dedicated to getting everything that Violet needs, there is no wrong in that. I like rjamz idea of writing down a schedule of everything so you can see how the days/weeks look for you. I know adding on m/s does no make it easier but WHEN you get the zofran it will help you, promise. Lots of hair pats, hugs mama.
I'm so sorry. We're you able to get the Zofran to help with the nausea and vomiting?
At this point I'm just going to wait to ask for it at my appointment on Monday. They better give it to me! I might start crying if they don't.
I find crying always helps! Don't doubt that you are being the best mother ever for Violet. She is incredibly lucky to have such wonderful parents who care about her and are willing to help her in anyway possible. That is a lot to handle for anyone and you are doing it pregnant!
Post by formerlyllizzyb on Aug 7, 2013 11:19:05 GMT -5
Oh Trudy, big hugs to you. We just had speech this morning and I'm overwhelmed with just one weekly appt. I have the utmost admiration for you. You WILL make it work, day by day, and vent here when you're overwhelmed. I know we all say this, but V and #2 are sooo lucky to have you!
I was literally going to post asking you about the private speech appintment. Oh man lady love, you've got a full plate and I'm so sorry you are juggling it all while KU. Your dedication to continuing to do what is best for Violet is commendable- you are a force to be reckoned with! Can all these appointments be scheduled at the same time, same day each week? That will definitely help keep things organized. Are you looking into PT gyms in Brooklyn? I'm going to guess that less commuting will make your life a hell of a lot easier. I wish I was back home to help you!! Ugghhhh hang in there. You can and WILL do this!
Yea, the PT gyms are in Brooklyn, luckily. The speech therapist (who was great) has friends at two local ones so we're trying to get in there because it will help for the speech and PT to be able to talk about Violet and figure stuff out together. And the EI people come to us which helps a lot.
She also recommended we have a monthly meeting with ALL of Violet's therapists to try and work on plans together so we're going to try and organize that too.
Oh, that is a lot to take in. You are such an incredible advocate for your daughter. Seven appointments plus your own appts is completely overwhelming, but can you schedule them at the same time every week? Maybe once you get them set you will find a groove. Things will work out. Deep breaths and ice cream usually help.
Trudy, you are doing every thing under the sun and in your power to help Violet. You are a truly fabulous mom and advocate for your daughter. Please be kind to yourself! It's overwhelming, but once you get into a routine, it may feel better - just following a schedule and making it work as much as possible. It's okay to miss a session occasionally if you have an appointment! Is there any way to combine any of the therapies into one session?
Also, the private speech therapist sounds wonderful, but remember, this is also a business to her. So she might recommend 3x/week, but it's okay for you to start with 2x/week and see how that goes.
Deep breaths! It really will be okay and you will look back at some point and realize that you will be able to tell Violet, when she's older, that you did EVERYTHING in your power to help her. Truly awesome!
As for the geneticist, are they looking for something specific? As in, do you have a certain syndrome in mind that you think Violet might have?
Post by charlielove on Aug 7, 2013 11:30:18 GMT -5
Seven therapy appointments is a lot. Is everyone working with V aware that she will be in therapy that many times a week? I could see it potentially being overwhelming for you and her. BUT, I know you are an excellent advocate for her, and if you see it is too much, will pull back.
Seriously Trudy, you are doing such a wonderful job making this all available to V and doing everything you can to further her success. Don't be hard on yourself! Hugs!
As for the geneticist, are they looking for something specific? As in, do you have a certain syndrome in mind that you think Violet might have?
No, nothing specific. Our neurologist semi-recommended it at our last visit (he was on the fence over whether or not it would be helpful to go) and we decided to schedule it just to cover all our bases. And, thanks to this board and the fabulous rjamz we were able to get an appointment with someone really great. I'm incredibly nervous for the appointment but it's good to have as much information as possible, right?
Post by creamsiclechica on Aug 7, 2013 11:33:47 GMT -5
Honey, you're beyond amazing. Just having to think about all these things going on with Violet and planning an attack is emotionally, physically, and financially taxing, and you've been doing beautifully at it. You are the best advocate for your child ever, and every ounce you put in astounds us all. Truly believe that. She has made incredible strides because of your dedication.
That being said, the upcoming things are a lot to handle, and it's more than okay to feel overwhelmed. Especially pregnant. I just know you're going to be tremendous at all of it, even if you feel terrible. Please do whatever you can to be comfortable. Call for Zofran today, the worst than they can do is say wait for your appointment, and then you're no worse off than before. It's okay to drink coffee if you're tired and you need a pick me up. It's okay to cry, whine, lay down on the floor while she's playing. Anything you can do for yourself in between all of these obligations to just MANAGE.
You couldn't be any BETTER of a mother. How you feel is absolutely no real reflection on how you're doing with Violet. I didn't have any of this stuff going on, and in the beginning of my pregnancy this time, I felt like I was failing as a wife, mother, housekeeper, human. But it's not true. And you're doing like 50 times what I ever did. Please remember to take time to give yourself credit.
We all love you, and whatever we can do to help, let us know. If your doctor will not give you Zofran, I will (or someone else here too I bet, but shhh, I know we're not supposed to say that).
Wow, Trudy, that certainly is a lot! You can do it though! Violet has progressed so far already and I have no doubt that it's because of all of the amazing therapy opportunities you guys have given her. You're making such a huge difference for her future! Sending hugs...
Seven therapy appointments is a lot. Is everyone working with V aware that she will be in therapy that many times a week? I could see it potentially being overwhelming for you and her. BUT, I know you are an excellent advocate for her, and if you see it is too much, will pull back.
Seriously Trudy, you are doing such a wonderful job making this all available to V and doing everything you can to further her success. Don't be hard on yourself! Hugs!
It is a lot. Most of them are mostly just playing in different ways so I'm hoping it won't be too stressful for her, but we'll see. We are trying to REALLY go all out for the next 8 months or so because this kind of insane schedule probably won't be possible with a newborn.
As for the geneticist, are they looking for something specific? As in, do you have a certain syndrome in mind that you think Violet might have?
No, nothing specific. Our neurologist semi-recommended it at our last visit (he was on the fence over whether or not it would be helpful to go) and we decided to schedule it just to cover all our bases. And, thanks to this board and the fabulous rjamz we were able to get an appointment with someone really great. I'm incredibly nervous for the appointment but it's good to have as much information as possible, right?
Yes, absolutely! More info is definitely better. When we went, they started with a physical exam looking for anything in her body or appearance that might signal something specific - like shape of eyes, position of ears, etc. We also did an extensive family history and detailed info about Violet over the phone prior to our appointment. We had something in mind going in, though, so our testing was pretty straight-forward. I'll be interested to hear how your appointment goes. I wonder if they can just do a general DNA test for any changes? @therealmc? That's wonderful that you were able to get with someone good! Those doctors can have waiting lists miles long!
Seven therapy appointments is a lot. Is everyone working with V aware that she will be in therapy that many times a week? I could see it potentially being overwhelming for you and her. BUT, I know you are an excellent advocate for her, and if you see it is too much, will pull back.
Seriously Trudy, you are doing such a wonderful job making this all available to V and doing everything you can to further her success. Don't be hard on yourself! Hugs!
It is a lot. Most of them are mostly just playing in different ways so I'm hoping it won't be too stressful for her, but we'll see. We are trying to REALLY go all out for the next 8 months or so because this kind of insane schedule probably won't be possible with a newborn.
Oh gosh, what have I gotten myself into!
No, I totally understand why you are doing this now and not later. It makes sense to me, and I think it's smart to go into it knowing that if it is too stressful, you can always change things.
Post by spaghetticat on Aug 7, 2013 11:49:58 GMT -5
Hang in there, you're a great mom!
First, I think the advocate is a great idea. Having someone in your corner, with your best interests in mind is a great start. I agree with ruby412 - they are going to want you to come a lot of times because it means more money for them. I am not saying it's the only reason, it's just something to think about.
I think making a calendar would help me out if I was dealing with all this. It makes me feel better to see it all laid out. It wil also help you with all of the details.
Good luck. And I think you should take rjamz on her offer to watch Violet for you!