I think that this is a question that I may never stop asking myself. As a parent I only want the best for both of my children, it just seems much easier to figure out what is best for Emma as opposed to Tatum. Sometime I just sit and question myself should I have a second opinion? Am I over reacting? Should she see other Doctors? When should she start these other appts.? Is her electrolytes being checked often enough?
There are so many things common in WS children and I really do not know what Tatum has or doesn't have aside from her heart problems. I have decided to make her an appt at CHOP's WS clinic, and I am speaking to her pediatrician about making a eye doctor appointment for her. I think her eyes are fine but who knows. I just wish she came with instructions. Something titled, Hi Mom I have special needs but follow this book and we'll be fine, that would be perfect.
The heart problems really put me on edge part of me wants it fixed now and the rest of me thinks CHILL OUT LISA your doctors are the best in the area and they know what is best for her. This year is going to be a great learning experience for me since I am not so patient in these areas and I am not so fond of surprises. I would much rather know what is going on and the solution. Instead I hear that there is nothing fixable by surgery atleast not in one shot.
I look at Tatum and for such a little thing she is accomplishing so much. Just the other day I picked her up from daycare and they showed me how she slides like a slug right off the blanket across the floor,( at slug speed too :)) I was very impressed. The OT and PT ladies always say how hard she is working and how much determination that she shows, these are all good signs right? Then I watch her drink a bottle and break out in to sweat, ERRR such a catch 22.
She is becoming such a pleasant baby she smiles and talk's to you and loves it when you talk to her, so cute. She even gives kisses, sort of...She leans toward you with an open mouth. It's a start I know. She is just so tiny sometimes I wonder if she is ever going to grow. For now most people just comment on her hair and not her size, they all just assume that she was a preemie not a full term 7.14 baby girl.
Ok I'll stop complaining and be thankful for my two beautiful girls and loving husband, but sometimes you just have to vent.
4 comments:
Vent away, sistah! It sounds like you have your bases covered in terms of Tatum's health care, especially since you are going to visit a WS clinic. You are a great mother to both your girls. I am so happy you chose to share your experience, as it helps me out a lot, too. Love you! Nance
You vent all you want! That is why this is YOUR blog. I agree with Nancy...you are a GREAT mother and you are doing the best for both of those girls.
I understand the frustrations you are going through. You know I am going through the exact feelings you are at this very minute.
Things will work out, Tatum will grow and get bigger, and you will find the answers you are looking for.
Love you and can't wait to see you!
I feel the same way as you do... A few days ago I noticed that Szabi's ribs on his left side are overhanging a little bit... I asked the PT-woman, the doc, but they said it's okay, maybe his SVAS causes this...now I have to wait 3 weeks till we can go to meet his heart-doc :(
You are a GREAT mother and you know what's best for your daughters in your heart. That's great about going to a WS clinic. If you love your pediatrician, then keep her/him... otherwise switch. Ours is in a way overly cautious about everything, but we do get all our bases covered.
If you haven't seen a geneticist you might want to consider that, but since you are going to the clinic you are probably all set. Our geneticist had us going to the opthamologist plus a few other things that no one else recommended.
Post when you're going to the clinic; I can't wait to hear all about that. And keep venting! We all understand where you're coming from :)
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