Thursday, August 20, 2009

Picking and Choosing. Alternately titled, "A long jumbled mess of confusion".

Dylan and I just got home from 2 appointments - the first was a hearing test and the second was a follow-up with his GI doctor. After being at the hospital for 3 hours, I began to get thoroughly annoyed, err...I mean I began to think. I began to question the necessity of all of this stuff. All of these darn appointments. As we were driving home, I started to wonder how a person, more specifically, a mom, can know how to pick and choose which medical appointments and Early Intervention services are absolutely, positively necessary? I mean, we can't just go along with every single suggestion that is made, can we? Or do we? I'm not trying to be snarky. I honestly don't know. Yes, I try to go with my instincts, but that is certainly not fool proof. Heck, I have probably already made approximately 3 zillion wrong decisions since Dylan was born.

So yeah.

I have left every single hearing test that Dylan has ever had confused - beginning with his newborn screening. He has never officially passed a test, yet I have always been reassured that it may not mean anything. That, in fact, he may be able to hear just fine, but they don't know for sure. Today was no exception. Although this time, the results showed a possibility of mild hearing loss in both ears as opposed to only his right ear. This time, they administered the behavioral test as well - the one where sounds are administered through speakers and they watch to see if Dylan turns his head appropriately. Bahhh. Who knows if he was tired/not in the mood/too busy clapping and waving to care/or really couldn't hear the sounds? Well, now we have a follow-up appointment in 8 weeks to see if there is any change - good or bad. Keep in mind that this is probably our 6th hearing test this year. At the next eval, if his results are worse, we will have an initial appointment with an Ear, Nose and Throat doctor to begin the search for finding out more information about the exact hearing loss and to discuss the possibility of putting in tubes.

So there's that.

Then, Dylan's GI doctor talked with us a bit more about the swallow study results as well as the Endoscopy and Bronchoscopy that were recommended a while back. I still stand firm right now that we will hold off on the 'oscopies. But again, what do I know? So we were at the GI doctor for over an hour for nothing. I mean, literally, nothing. What is the point of that? Seriously?

That reminds me, I remember mentioning to Dylan's pedi a while back that I noticed he sometimes wakes at night and occasionally makes noises in his sleep (kind of like a snore, but not really) and she suggested that he have a sleep study done. Still haven't done it. Is this necessary?

And speech. We are most likely going to be adding that service soon in addition to OT, PT, EI Family Therapy and twice monthly appointments with our EI service coordinator. Music therapy is still on hold. Last week our service coordinator mentioned that she is starting to put a feeding team together and would I be interested in having them come out to evaluate Dylan? My immediate response? "Yes, definitely!".

Again with the picking and choosing. Are these all necessary? Well, no of course not. But which things are? I am trying to do everything possible in the best interest of my child, but how much is too much?

How do you pick and choose? How do you wade through all of the doctor appointment recommendations and Early Intervention service suggestions? What do our children need? I mean really really need? And what things are simply precautionary?

Sometimes I wish we could just "be". But then if we were just "being", you SO know that I would be feeling guilty for not doing something.

Whew. If you made it through this jumbled mess of confusion, I'm impressed. And I thank you for sticking it out.


Kimberly said...

Yeah I can't imagine how overwhelming that all is. Working in the medical field I know what all of those Dr.s do and that they can help. But are you supposed to live your life going to different Dr.s appts and tests? I would just stick with the basics. Give Dylan time to learn and progress on his own. When you see a specialist it is their job to tell you what you can do for the problem, you are there to see them and for their medical advise and that is what you are going to get. But you don't have to take all of their advise and do all of the procedures they suggest. If Dylan is really struggling in certian areas that truly affect his life and a Dr suggests he needs something than you would do it. But again it is up to you what you get done and that is difficult and stressful, trying to decide exactly what he needs.
You have been doing great and don't doubt yourself. You are an amazing mother and Dylan has met so many goals and is happy and healthy. Try not to put too much pressure on yourself.

Tausha said...

I so know what you mean. Sam hasnt done well with his hearing test but stopped going to the audiologist and went straight to an ENT. The thing is, I think he does hear well but he still has fluid in both ears so we may be putting in tubes the end of the year. We also are going to be introduced to a Speech Therapy so that adds yet another person coming into our home, it's gets overwhelming does't it. I guess for me I will just let them come and hope it is all worth it. But I think as long as he is sleeping through the night I wouldn't worry about a sleep study but that is just me. Sam makes noise and breaths heave as well but still sleeps well.

Cathy said...

Wish I had some words of wisdom for you. But, alas, I've often wondered if it's all necessary too.

Bethany said...

Who are you seeing to follow his hearing? That isn't an ENT? I'd skip over all that and just go straight to the ENT. Most likely he'll need tubes in his ears. Most kids with DS do. I hate to generalize, but it is true.

Also, both my girls had "mild hearing loss" according to the booth tests. You might save your self a lot of time and energy by just requesting an ABR and be done with it. Yes, he is mildly sedated, but it really is nothing.

BTW I only have an ENT follow my girls for that kind of stuff. As much as my ped would like to say they can see in their ears, I know that isn't possible. The ENT has to take them under the microscope every time because of the small canals, so the ped is full of it when they say they can see. It is a pride thing, as far as I'm concerned.

Sleep study ... yes, yes and yes. It is highly recommended that all kids with DS have one by age 3. Sleep apnea is another very common thing. Unfortunately. If he is making weird sounds in his sleep, I'd order the sleep study. It is a PITA, but worth it to know. Could lead to removal of tonsils and/or adenoids, but such is life.

Yeah, all the appts are ANNOYING. But I for one am a proactive one ... I like to get all my testing done before more damage is done. Ya know?

Bethany said...

BTW while the booth hearing test and tympanograms showed Nika had mild loss, her ABR showed no loss at all. We have Payton's next week I think ... I can't wait! LOL

Adrienne said...

lol- sorry no help here but I stuck with you.

Katie said...

I really appreciate how eloquent you are about all of the issues that not just you are dealing with, but all mothers in some way, shape or form. We all need to question ourselves, make mistakes, remember we don't always know what to do, and stop to think about what our own hearts and brains are telling us to do. I wish you lots of luck wading through it all!

Lis said...

Gosh, I cannot imagine having to pick and choose. I know whatever you decide will be the right thing, you are the best mom!

Hector and Jennifer Varanini Sanchez said...

Just writing to say that I've experienced the same dilemma and confusion with the hearing test, tubes, aids, etc. We just fought to get the tubes asap to get the fluid out and not have to do the aids.
Our other issue is the eyes and his's never ending all this stuff! But we do what we have to do for our little ones- they are so worth it!

Jackie said...

Wow, how do you even have time for more appointments. I have no idea how I'd even start to decide with all that. I sympathize, but sorry I have no good advice. Good luck.

Lisa said...

We test for things when we see a reason to do so. (That said, we have tested for things like thyroid function and--just today--an x-ray for Atlantoaxial Instability because both have been recommended...and the issues can be present without obvious symptoms). Otherwise, we have followed basic healthcare guidelines for children with Ds. My mindset is that we can worry about everything that MIGHT happen with Bridget. If we see no indication, though, of issues...then why put her through additional testing. If we notice something unusual, we'll pursue it comes up.

Same with therapy. If she seems to be "working on" a skill herself--or clearly interested in doing something that she is having trouble doing/doing correctly--then we have asked for support in helping her reach that goal. If she shows no interest with something, let's say like in using scissors effectively, then we don't make that a priority.

Are all therapies necessary all the time? NO. Be fluid. Learning is not neat and linear, nor is it predictable. Dylan will work on things (and attain skills) on his own schedule. Roll with it..and be confident in your know what you are doing!

Sasha said...

You must have been reading my mind in a way. My post yesterday was about being tired. Tired of a lot of appointments. I too am in the midst of going to an ENT. Wysdom has had 3 hearing test and the last ones said mild hearling loss due to fluid. I am going to the ENT..firstly because I want one, as it can be important to have an ENT. We just went to the eye clinic today and then go to the cardi on Monday. Right now I feel that most things are needed even though I am really over packed with appointments.

Where I find I can choose a little bit of the time is with my therapists coming in. I am just starting to learn that hey..some are not really doing anything productive while they are visiting. Just jotting down notes and such. I too am learning what to do over time and as time passes I can tell that I will be more selective with things that I choose to do.

That being the case..I still worry about if it is the right thing or not. In the case of the sleep study, my little guy makes lots of noise at night. He has a strider and I will probably need a study in the future. Maybe look at how Dylan is breathing? If he's retracting ect to decide if it's something you need to do now or in the future?

I can't give much advice since I am in the exact same position right now. Thank you for sharing though, as I know your feelings are similar to mine and that provides me with some comfort in some weird way. Even when you think you are doing the right thing..I have learned that down the road it feels like the wrong thing. So my only advice is don't be afraid to change your mind or speak your mind to get what you want or don't want.

Sharon said...

Hmmmm....I don't really have any input on the hearing or GI other than to follow your instincts. And with the therapy, maybe you could reduce the coordinator visits to an as-needed basis. We used to see ours monthly, but now see her only upon request when I want to add or change services. At least that would be two less appointments per month. And the others you should feel free to adjust, too - it definitely is about finding the right balance - a balance we're still trying to find.

Katie said...

I completely understand! I was totally overwhelmed with Jack and what he should be getting. After his EI evaluation, PT was suggested once a week, OT twice a month and DT and ST once a month, BUT any new Mom I would meet, I would ask how often their child is getting/did get therapies. Many Moms said to load up on services and told me that it's the LAW that every EI child gets weekly services by each therapist, no matter what. Hmm, so should I have pushed for that? Should I be happy he wasn't needed all the therapys because he's doing well? Was the state just trying to jip my son? I'm sure you see where I am going. The truth is, we will never know how much or how little or how many appointments to take or not take our children to. We just do what we can and what we feel is right (at the moment). And you can change you mind how often you like. =) I could go on for days, but trust what you are doing. You are a great Mom!

Angela said...


I don't know.

I guess I just think that anything that can possibly help him is something that is worth it for me to do, even if it causes discomfort to do.

Sorry it's been so rough. You're *such* a good mommy. (((hugs)))

Brandie said...

We prioritize. The first 1 1/2 years vision and PT were weekly and the others less often. Now at 2 Goldie doesn't need either of those, but has weekly OT and speech. We only see our service co-ordinator quarterly. I declined the special instruction/infant educator because it was redundant. I know there were times while I was trying to figure out what worked for us that the SC was tired of coming out for me to sign the drop/add forms! Just remember, you can always change your mind. right?

We waited until after 2 for the sleep study. None of my kids were great sleepers as a baby so I wanted to see if it would get better on its own.

Carrie said...

I just found your blog from babycenter--and this post is exactly how I have been feeling! We just moved so in our new state, EI is done differently--starting next week we will be doing OT 2x/week, ST 1-2x/week, and the special educator 1x/week...which I'm not exactly sure why I need that, but my SC says everyone gets we'll see what I think after a few visits with her.