Friday, July 12, 2013

Finally giving a one year update!

Ok- so, only about 2 months late.  I cannot seem to get it together lately!  At the end of April, we had another follow-up appointment.  This would be considered her 1 year appointment.  Dr. David had nothing but great things to say.  She said her head looked and felt perfect. She didn't see anything to be concerned about!  YAY!  We were thrilled.  Such a relief for everybody.

In May, Mallory turned two- only 6 days before her 1-year Cranioversary.  We celebrated with a rainbow themed party at our house with many family and friends.  We asked that our guests donate items to Cranio Care Bears , a charity that is very important to us.  Thank you to everyone who contributed to this great organization!  Look at everything we collected :)

We all had such a great time- particularly the birthday girl.  How cute was she?

We truly enjoyed that day with everyone.  On her 1st birthday, Kit and I were in a fog with the surgery looming but this year we were able to relax, have fun, and enjoy the time with everyone.

Of course, nothing lasts forever.  This high began to deflate only a few weeks ago when we found several bumps in her head.  Boo.  I called to make an appointment for when we returned from our vacation.  Automatically we thought the worst but my mantra is "It is what it is".  There is nothing I can do to change what is happening.  Turns out, it is good that I didn't do too much worrying because all is well!  We saw our surgeon a few days ago.  She explained that all of the bumps are normal. Two were the screws starting to dissolve.  One of the bumps is the plate.  And the final bump she thinks is part of her natural head shape- oh well, I still think she's perfect! 

We also had a follow-up with the neuro-surgeon this week for her arachnoid cyst that they found during the initial scan last year.  He explained that the cyst will continue to grow at the same rate as her brain.  But he has no reason to believe that it has, or will, cause her any problems so he has released us from his care!  I am happy to hear that.  We have enough doctors appointments with these 3 girls!

So, here we are almost 14 months post-surgery and all is well!   Our next follow-ups with the surgeon are November and April 2014.  Hopefully I will nothing to update.  ;)

Thanks again for reading.  Also, thanks for everyone's continued support during this journey.

Wednesday, March 6, 2013

Speech delay.......what speech delay?

As I mentioned in my last entry, we were a little worried about Mallory's speech.  During Christmas break I realized that she hadn't gained one more word in her vocabulary for about a month so I decided it was time to look into it.  I called my pediatrician and she suggested I start with an evaluation at the CDSA in Winston-Salem.  We very quickly met with our service provider and got an evaluation scheduled for the middle of January.  A child psychologist came and spent about 2 hours with Mallory and I at the house.  Of course, she loved the individual attention!  Their assessment consisted of 5 different areas of development and in all 5 she had typical development even in communication.  However, that score consisted of both receptive and expressive so she did an additional assessment that broke up the 2 areas.  Based on this test, Mallory did have a 45% delay in expressive language (scored at 11 months and she was 20 months at the time) so we qualified for the services of the agency.  The next week we created our Family Service Plan where we decided to continue with a speech evaluation.  Due to the stomach flu and other various illnesses our scheduled evaluation was delayed (no pun intended!) ;) so we didn't get in until mid February.  About a week before the appointment I just knew she would not qualify.  Her speech had exploded- she copied everything we said and had probably gained about 20 words in a month.  Well, I was right.  She scored at almost exactly her chronological age.  And about 3 weeks later we continue to hear more and more.  It's so exciting to hear and I smile every time she says something to me.   This was the ONLY area we have ever worried about and here we are almost 10 months past surgery and she is right where we should be.
What a miracle!

Wednesday, December 26, 2012

Good news is.....

I was just sitting here re-reading old posts.  Sometimes I just have to do that.  Its hard to believe that its been 7 months.  But, in some ways it seems forever ago.  Does that make sense?  Good news's behind us.

Last week I received an email from someone who came across my blog, G.  She was waiting to hear back from a plastic surgeon in NC about the results of her daughter's catscan.  She was inquiring about where we had the surgery and asking for any insight I had.  I was happy, AM happy, to help anyone who may have just started their own cranio journey.  The good news is....she didn't need my help!  The surgeon ruled out cranio after seeing the scans.  Congrats G!!

In my last post, I mentioned Mallory's delay in her expressive language.  At her appointment in November, the pediatrician and I agreed to wait 2-3 months to see if her rate in learning new words increased at all.  Good news is.....she learned a new word this week.  Bad news's NO.

Last bit of good news more week left of Christmas vacation!!

Happy New Year's everyone!

Saturday, November 17, 2012

All is good!

Our last visit with the surgeon went well- extremely well.  Mallory's noggin is perfect.  Well, according the doctor.  You can still see the "screws" and the lumps and bumps are still there but according to her that just takes time.  The way she explained it is that Mallory's body is fighting this foreign substance so there is some swelling in the area of the surgery.  As the screws begin to dissolve, the swelling will go down.   The only worry that we (parents and doctors) have at this time is her delay in talking.  In the last 2 weeks I have noticed a few words so I am hopeful that she just needs some extra time.  We will be looking into this soon.
A few people have told me recently that they continue to keep up with my blog.
So, thank you to those people.  And to anyone else that has come across this blog.  I appreciate you keeping up with our sweet Mal and her journey.

Saturday, October 6, 2012

Surgery- what surgery?

We are more than 4 months post-surgery and it seems like so long ago.  It's strange- something that was such a MAJOR part of our life only half a year ago is now something I barely think about.  Sure, I have the little screws sticking out of her head (hhhmmm....Frankenstein for Halloween?) or the remaining scabs on the incision to remind me but with all the action of our daily life those things go unnoticed.
The first few days after getting rid of the helmet were interesting ones.  Mallory didn't realize that when you had a tantrum on the floor and threw your body down, it actually hurt to have your head hit the hardwoods.  Only took her twice and now she does a slo-mo tantrum until she is completely on the floor and lets loose.  Within 3 days it was life as usual.
We have another follow-up appointment in 2 weeks- I am positive we will get good news.

Thursday, August 23, 2012

3 month surgiversary!!

I remember thinking how long 3 months sounded and here we are!  Technically, we could take the helmet off today but we decided to leave it for one more day.  This is Mallory's first week back at daycare so I am sure she is all over the place.  We will take the helmet off tomorrow night- yay!  I will report back to let everyone know how it is going.  I am sure it will be an interesting weekend.  She is so used to having a helmet that she throws her head around and walks into things and has no knowledge of the consequences.  She will find out soon enough.......

Tuesday, July 24, 2012

2 months out

Yesterday was the 2 month anniversary of the surgery.  That means 2/3 of the way through the helmet wearing.  Mallory is doing extremely well.  Its like nothing happened.  The only clues are the large pink puffy helmet on her head and the zig-zag incision through the head.  Well, okay, those are pretty big clues but looking at her daily life you would never know the trauma she went through only 2 months ago.  Today we had another follow-up appointment.  Her surgeon said she is healing perfectly both inside and outside.  The bones should be set very soon so in one month time the helmet is gone!!  YAY!!  Really, the helmet hasn't been such a big deal.  She sweats more but it has helped while she learned to walk.  I know she will be excited to get rid of it.  When I take it off for baths she just sits there and rubs her head.  Too cute!  She is growing up so quickly.  She is now walking, attempting to run, and has started talking.  Words include: dog, dada, thank you, and bird.    She also understands so much of what we ask her to do.   Sniff- sniff- so sad knowing she is my last one.  Here is a picture of our family portraits taken a week ago.  Can't even see the incision from the front!
  Her next appointment is 3 months from now so hopefully we will have nothing new to report for a while!!  Thanks for reading.  Enjoy the rest of your summer.  We hope to do the same.