Re: Graces 9 month check (sorry a little long!)

[Guest guest]

,

Are the bumps right where the helmet openings were and do they look like her

head was trying to grow through the openings? Does that make sense? I

think Sam had the same sort of bump at the opening of his DOC band, and I

asked about it everytime we went in. How long did she wear the band? Sam

wore his for only 7 weeks, graduated about 2 weeks ago, and I think the bump

is not noticeable any more. I'll check in the morning now that you've got

me thinking about it again. Maybe if Grace wore her band longer, then it

will take longer for the bumps to round out. Honestly, I'm still

scrutinizing Sam and Sara's heads everyday, and I really hadn't thought

about the bump lately, so I think it has gone away, or is less noticeable.

I'm hoping the same will happen with Grace.

On a side note, I'm cleaning house getting ready for the in-laws to visit,

and I finally decided to put the bands on the original headsicles to see

what they look like before I put them away. WOW! When they got their bands

they fit great, but when I put them on tonight and saw how much had been

shaved out of the bands by the end, and I remember how snug the bands were

at graduation, I am totally amazed. We did the right thing! I love those

little round heads, even if there is a slight lump on one side of Sam.

Gail, Sam and Sara's mom, DOC grads

[Guest guest]

Gail~ That is interesting to hear. Grace wore her helmet for about 5 months so I guess it would take longer for the bumps to go down depending on the length of wear. Her ped said that he thought that if they were going to go down it would be between now and 6 months. It is so hard not to look at every angle and lump and bump and whatnot. I was thinking last night that I am sure if I were bald my head wouldn't be so perfect looking under all this hair!!

On a side note I saw a lady at the ped's yesterday and she had these two darling twins (boy and girl) and they reminded me of your pictures of Sam and Sara

Thanks and Gracie

[Guest guest]

Marci~

That is kind of what I thought. It made me feel like Graces head and her lumps was some sort of an expeirment. " Hmmmm interesting....let's see what happens if we do this to her!"

I personally don't think that they have gone down my but my husband thinks that they have gone down. I look at her little head 24/7 so maybe that is why I am not seeing the difference? I keep looking back at pictures and whatnot and I just can't tell. That is a good idea to ask her PT what he thinks.

I will keep you posted. It is just frustrating because I feel like we went a long way to get her through this treatment and to make sure that she is getting the best care and then here are these big lumps!!

Hopefully today will be a better day

and Grace

[Guest guest]

,

I'm sorry to hear that you are having a " feeling bad " day. Aren't those the

pits?! I have heard a number of people in this group talking about lumps in

connection with their band/helmet so I think it is something that happens

sometimes. Most do say that after they stop wearing the band the lumps fade. I'm

surprised your ped didn't have more to say about them rather then " it will be

interesting..... " . It would have been nice of him to offer a little more

information. Does your PT have anything to say about the lumps? It seems that

PTs are often very knowledgable about those kinds of things.

Good to hear that the tort is resolved though - that has got to feel good! I

think it is a good idea to stick with it for awhile longer - couldn't hurt!

I hope you are feeling better. Keep us posted on the lumps. Do they seem to have

gone down at all since you stopped?

Marci (Mom to )

Oklahoma

[Guest guest]

,

I think its a great idea for you to stay on top of the tort- sometimes

walking can really get them reverting back to the tilt- so keep on top of

this until she is 2 with posture, etc. I am not sure about the lumps, at

least your ped is addressing this with concern and keeping an eye on it-

although I do recall others talking about these lumps with certain helmets.

Your mom was probably just a concerned grandma, and looking for answers with

the nurses and medical staff. Sometimes it can really overwhelm us and we

don't know what else to do except talk about it (which brings us here

I'm sure all will be fine and Grace is doing beautifully so don't worry too

much! Keep us posted!

' Mom

[Guest guest]

Thanks . My husband has only received alot of info on tort through me and what I read or get from this group. I think he believes that if the PT says she is doing great, that we are done. I keep explaining to him that more milestones are ahead like when she walks etc. and that we as parents need to follow our instincts on it. Our PT has been so incredible and the progress has been amazing. Even our ped. couldn't believe how far she has come. I don't believe that anybody who did not know about the tort would ever even think that she had, had a problem in the first place. The only bummer is our PT is moving to a facility that is a couple of hours away from us in July so we will have to switch PT's if we continue and Grace loves him. She has been with him since she was three months old. But this other man that would take over is the one who fitted her for her tot collar and she has taken a little shine to him too so hopefully she will like him

[Guest guest]

,

I can so relate to you getting all the info and then bringing it back to

hubby- I used to say I was the coach learning all the plays and bringing them

back to the team- which can be very frustrating and also tiresome, you aren't

always sure with this or that and it can be very stressful to figure this out

yourselves and go against almost an entire medical community! I say it never

hurts to be on the safe side, so go with your instincts and keep a watchful

eye, it has been known to come back so keeping it at bay at all costs will

make sure yours and Grace's hard work is not lost. It is such an

exhilirating feeling seeing them go from severe or moderate to nobody has a

clue there was a problem. My aunt saw him for the first time at 8 months and

thought he looked great- I was like- do you know what we went through these

past 8 months to get here? I am so glad to hear how well Grace has done-

great job mom and dad!!!!

' mom