I didn't know what the name of this topic should be.  

As you may know Trey has just turned one and has had surgery on both sides of his head for MM.  He has been doing great.  Today while at Maw-Maw's house though, he cried a few times when people did anything with his head.  He was tired so I don't know if that had anything to do with it or if I should take him to the doctors.  This happened 3 times.  The first was when Paw-Paw was playing with him and touched his head, the second I was wiping food out of his hair with a wet rag, and the third time was my brother-in-law put an adult sized ball cap on his head (which Trey normally loves playing with guy's hats) and he looked at my brother-in-law for several seconds and started to cry.  I know that he was tired, but should I worry?  His stitches seem to be almost completely gone and he has healed great.  He was acting fine before and afer these incidents and even let his Maw-Maw wash his hair before any of this happened.  He is 1 month and 1 week post ops.  I have emailed his Neurologist in Birmingham, but will not hear back from her until tomorrow.

Thank you for letting me seem paranoid with you guys and understanding it!!!:)

Michell

I would contact your physician.  Trust your instincts and be safe.  Let us know how little Trey is doing.

I agree with Tammy....trust your instincts.  My family doc calls the "mommy" instincts and they're usually right on.

-Shari

I spoke with the Neurosurgeon's nurse and she said that it was nothing to worry about.  He was tired and he is probably feeling sensations that he doesn't know.  He was possibly uncomfortable, but probably just had some weird feelings that he didn't understand.  He has been acting fine since and he has not cried today at all when someone has touched his head, nor did he last night after these incidents.

Thank you all for your advice.  I worry alittle to much and just need reassurance sometimes.  I know this disease is hard for all of us, it is sometimes really hard when it is happening to someone who can not talk yet.  Thank you for all of your support.

Michell

Glad to hear that Trey is doing ok. My surgery was three months ago and i sometimes have uncomfortable feelings around my scar, so it might have just been a bad day. im sorry that Trey has been through so much so young but now he has his life to look forward to. Best of luck to you both!

Christy

Michell (and everyone),

Sure glad to hear the update on Trey - that's really good news!  As a parent of someone who has been through surgeries, I think I can safely say that we all need many reassurances.  I still find myself panicking at every little discomfort that Tara has.  It's so hard to relax and just let her live her life!  I hope that it eventually evolves to a point where life gets back to "normal", but it will probably take some time!

I sure love having this site and all of you to talk to!

Jill (gotchlorine)

Michell,
Mother to mother, I would have to say you can never worry too much about MM. I believe the other parents of children with MM would agree. I'm glad to hear it was nothing wrong, but it's always best to sound like a worrisome parent, than to not say anything and find out you should have.
I will keep your family in my prayers, Rena

Thank you guys for all of your support.  I really don't know what I would have done without this site!!!  I really appreciate all of your encouragement and prayers.  Thank you a million times over.  

I love my baby so much and this has been a really scary 5 months.  I am so glad that he made it to his first birthday and is doing so well.  I am sure at one point or another I have shared that the doctor told us after he had had his second stroke that they didn't know if he would make it.  That was the most horrible feeling and words to hear.  I just gave it to the Lord and laid Trey on the alter as a symbol to God and told Him that Trey was His to do what He wanted, but I didn't want to let him go.  Now, I am glad he is doing great, but every not so wet diaper, upset moment, bad mood, or everytime he wont drink I worry whether I need to or not.  Thank you for helping me through the worry.  

This site has made our life a little better.  I now have people to come to to talk to and people who are feeling or have felt the same things that I am or have felt.  My husband is the strong silent type and we have a harder time with eachothers emotions and fears.  We have both given it to God and we know that He alone is the only one that knows Trey's plan, but for my husband he claims that is where he leaves it.  For me, I am with Trey 24/7 and sometimes some things get to me.  

Thank you!!!

Michell

Michell,

I can only imagine what you are going through-  literally keep the faith!!


Janice

Michell, First I want to say that I'm glad Trey is doing so well.I have felt all of the same feeling you have in the past 2 yrs we have been dealing with MM.Kahtleen was 4 at the time but becasue she was also born with Down Syndrome she was not as verbal as a typical 4 yr old.When they can't express exactly what they are feeling it makes a parents job that much more challenging.I always "play it safe". with anything I am concerned about. We have also been in the position of almost losing our little girl.Kahtleen had very severe strokes and what they thought were seizures, in between surgeries.She was left with a weakened right side and no use of ehr left side or speech.I remember that night praying to god"I can accept her with any dissability you give us just don't take her away".I truely meant it,and our prayers were answered,even more than we had hoped for. She is walking again,talking up a storm and reading and writting.I don't think anyone expected her to walk again.I treasure every day as I'm sure your family does.I will tell you that over time your worries will ease a bit.Not totally go away maybe but it won't be the first thing you think about.I worried everytime Kahtleen cried, now only if it's a  bad "pain cry" and I can't figure it out or it's prolonged.I have to say I don't know if anyone else has experienced this but Kahtleen's head still (after 2 yrs) seems sensitive at times.When I brush or wash it she really cries in what seems like pain sometimes(not always). Also just the slightest bump she cries and seems to be in a lot of pain.2 yrs ago I never thought we would be where we are now but time really does help us adjust.This surely is an amazing group of people I'm very glad you found your way here.I didn't have this support when we were going through our hardest times,I know how much it would have helped.Prayers for continued healing for your family.
Mary Grace

Michell, I can only ditto the sentiments of you and all the other Moms!  It so hard to know what to do sometimes!  You cannot "see" any problem with MM since its all in the head!  I am truly a believer in "mother's instincts"!  I think they are a gift from God!    So, just take good care of him, love him & go with your instincts!  
Michell, my husband is sorta like yours - I just decided that it is my job to do the worrying and take action where I think it needs to be taken.  Kyle is 7 yrs post-stroke and had very good recovery, but we still have worries with his migraines (maybe Trey was having a headache?), and ADD.  A mom of a preemie once told me "you never stop worrying about them!"
You've come a long way - hang in there, before you know it, he'll be heading to K, then, like Kyle, Middle school, etc!

God bless!

sue

Michell,
Happy to hear everything is good with your Trey.

Being a parent of a mm-child is very shaky and worrying and I think one of the hardest things to deal with is all the questions you´ll never get answered.... What´s going to happen next?; Is this present condition related to mm or is it just a regular headache, cold, or something else that all kids get from time to time?, What will happen in the future, is my child going to be able to have children and raise a family?, Do I worry too much?, Am I even hurtung my child with all my worries and AM I ALWAYS GOING TO HAVE TO BE THIS SCARED??

My Louise is 8 years old, doing good and is growing and learning as every "normal" child but still; 20 months past surgery I still have all these questions from time to time but I assure you as time passes and everything just keeps rolling on you do learn to live with your questions and worries, simply because you have no other option!
This site is a blessing to me ( and sometimes it makes me worry about things I didn´t know to worry about if you know what I mean) even though I sometimes understand as little as 25% of all the medical stuff written on it. I don´t know how I´m going to deal with this in the future, all I know is that my Louise is so much better at dealing with this than I am. Kids are truly fantastic and without her strengt and great wisdom I could´t take this at all. She´s probably had this disease all of her life and to her it´s "natural" and when your Trey grows older he is probably going to deal with it the same way.
Good Luck!

Annica