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weezie825
member
I need a safe place... may DD later
weezie825
member
I try so hard to always put a good face on, but I am having a really hard time right now... Evelyn has had a flat spot on her head since birth, but for the longest time everyone reassured me that "it was fine" and it would "resolve on its own when she started sitting up." Well last month our doctor was concerned about her head not rounding out, so she referred us to a PT that specializes in head issues for an evaluation. We had the eval last week.
The PT gave me quite a bit of information, and to be honest a lot of it went over my head. I was just so overwhelemd. I asked her to explain it to me as simply as she could and this is what I was told. Evelyn's connective tisse is too tight and this is causing problems.
With her head the PT is particularly concerned about her facial bone. She sais tha tthis is NOT a cosmetic issue. If it isn't corrected as her brain gets bigger it could start pressing on the bones and cause learning delays.
Additionally, the connective tissues between her organs are too tight. The PT said that she can feel tightness across DDs kidneys and that they aren't in "quite the right spot." And that her internal organs are closer together than they are supposed to be.
She did explain that this is common in preemies, because the way a baby develops their organs start out in the center and move into their final positions as the baby fetus develops. Some preemies are born before that process is completed.
When I asked the PT how bad it was, she said that she would call DD's level of issues, "moderate." Her recommendation is that we take DD to Kennedy Kreger to have a laser evaluation on the shape of her head and possibly be fitted for a head re-shaping helmet. In addition DD should have cranial massage to ensure that the bones in her head come together properly to avaid and learning issues.
I feel so completely overwhelmed... I honestly don't know how I am going to fit in another set of PT appointments. Not that I have a choice, I cannot not do it. What I mean is I don't know what else I can let slide in order to fit in yet another doctor/therapist.
To make matters worse, the therapist that our doc wants us to use doesn't participate in our insurance. Later today I have to call the insurance company and see if they will cover any of this. If they won't cover it I need to find an additional $400+ a month in our budget.
DD is awake and babbling Ma-Ma-Ma, so I am going to go snuggle her until it is time to take her to the hospital to visit her eye doctor....
This discussion has been closed.
Re: I need a safe place... may DD later
lovelylittleworld
BFP#2 1/12/12 ~ Missed M/C 8w2d
... every single day of forever.
I can't add to what Rags or Pastorswife said other than to say that you are really doing an amazing job being strong and very positive for Evie.
I would never know other than your seldom posts here that you've been dealing with so much. Just know that we are all here to listen and provide words of encouragement! I would definitely try finding a preemies group, I am sure someone else is dealing with very similar issues and you can probably find some great resources that way.
Francesca Pearl is here! Josephine Hope is almost 3!
The fact that you are so stressed about all this is just more proof that you are a great mom. Without repeating too much of what the pp said. I do agree a second opinion is a great idea. Also try and see if there is a way to go in network. Now that you have had a minute to digest it all try and call the DR with these questions. IT is hard to think of any when you are there.
More then anything try and take it one step at a time. Don't let your mind go to far ahead with the possibilities. More times then not it is never as bad as it "could" be. My sister went through something similar with her dd and she had an MRI at about your dd age. IT was really scary. She ended up with a little PT and no helmet. She is fine today. In first grade happy and perfect!
Good luck!!!
I'm keeping you and E in my T&P. I'm sure she'll be fine with the proper preventive treatment. You'll find a way to make it all happen. Hugs and GL with the insurance company.
BFP#1: 01/10, M/C 6w
BFP#2: 06/10, M/C 5w
BFP#3: 09/10, DS born June 1, 2011
BFP#4: 07/12, M/C 5w3d
BFP#5: 12/12, EDD 08/18/13
My Blog: Decorate This
Oh Maria, I'm so sorry you, Tim and Evie are going through this. It's completely understandable that you're feeling overwhelmed and a little shell-shocked. I echo PPs who encouraged you to get a second opinion, and even speak to your doctor about a PT who is just as skilled but may take your insurance. I'm sure the PT they referred you to is excellent, but I find it hard to believe that there aren't other PTs just as highly skilled in the area who might be covered.
You are a wonderful advocate for your daughter, hon. You guys can handle this and Evie can kick butt and show them that she'll excel and be just dandy.
I like pp's advice about getting help from the county--there is so much out there to help and so many resources, I'm sure it can get overwhelming though. You have my t&p's coming your way.
I'm sorry to hear this. I don't have much else to add that the PPs haven't said better than I could. I think it is completely natural to feel overwhelmed by news like this, especially after you guys have been through so much with Evie already and it is difficult to understand and you are hearing it from a clinical doctor, rather than a patient focused one.
You are a strong mama. I'm sending you all lots of hugs and thoughts and prayers for your family.
Happy Birthday, little man. We love you so much!
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So sorry to hear about all of this! Sounds like you are getting a 2nd opinion which might help. Just a suggestion...Not sure which insurance co. you have, but many of them do case management for complex cases...I wonder if you can get a case manager assigned for Evie to help you (over the phone and email) with what they can pay for and what not, as well as offer other programs that you may not know of yet or offer preferred providers...sometimes they are much more helpful than just reading your summary plan description or just calling the number on the back of your card and speaking with a different person each time.
Thanks everyone for the words of encouragement! Sorry for being MIA since I worte this, but DD has been sick.
Yesterday I was in our DC office and I was able to speak to one of my co-workers that is also an ER doc. (He actually did a residency at CHILDRENS in NoVa.)
By the time I got done telling him all the stuff the PT told me he was irrate. He said that the PT was talking way above her training and had absolutely no business trying to diagnos our LO. He said that cranial massage is pretty much a much of bunk and that the only way to fix a premature closing of the sutures is with surgery. He reiterated that I need to get a second opinion from a pediatric surgeon that deals with this kind of stuff.
Our pediatrician is suppossed to call me this afternoon to discuss next steps, for referring us to Hopkins (Kennedy Krieger) for an evaluation. I'll keep you gusy posted on how it goes.