Thursday, April 4, 2013

World Plagiocephaly Awareness Day

6 months ago I hadn't even heard of the word "plagiocephaly", today we are celebrating Lily being helmet free for one month!  Although her head may not be perfect it is perfect enough for us.  We are told that no one other than us (and anyone who knows where to look) would see anything but a perfect little head.  Going through the process was stressful but so worth it.  Today is a special day for me and I hope it is a day that will help raise awareness about this treatable condition.  All of you helmet babies and families have a wonderful day and proudly show off that cute little noggin of yours!

Monday, March 25, 2013

The Birthday Girl!

Lily had a wonderful birthday and party with friends and family.  Her party was Dr. Seuss themed and everything turned out fantastic!  Over her birthday weekend Lily also had 2 molars break through, this brings the teeth count to 10 teeth!  She recently discovered that she can dance, it is my favorite thing to watch.  She stomps her little feet really fast and claps, it's so cute.  She has also learned some new words and talks up a storm with her own little babble words.












Monday, March 4, 2013

Time sure does fly...

My sweet little girl is almost a year old.  I just can't believe how fast she can grown and how quickly it happened.

Monday, February 25, 2013

Wonderful News!

This morning we met with the plastic surgeon and we are thrilled to announce that Lily has made enough progress that she is finished with the helmet and surgery is off the table!  He said that he would still like to see the sides of her forehead come out a little bit more over the next few months, but even if her head would stay as it is now she should be just fine.  This is all such a relief and I finally feel like I can breathe again.  We will go back to our ortho next week for our exit scan to see just where we ended.

We are so happy with the results that we have had and we are thankful that we were able to use the helmet instead of jumping straight to surgery.  But I have to say that after 3 months and 3 weeks total I'm not too sad to see that smelly helmet go.  She does love to play with it so it will go on a stuffed teddy bear from now on.


Friday, February 22, 2013

The Home Stretch

Lily has been in her helmet now for 3 months, 2 weeks and 3 days...
At this point her helmet is now down to the plastic on the right side.  The ortho said that we really don't have any more adjustments!

On Monday we will go to the plastic surgeon and see if Lily has had enough improvement to avoid surgery.  The fear that I feel right now is incredibly overwhelming...
I look at Lily and the improvement that we have seen and I can't imagine him saying that it isn't enough, but at the same time I know that because her left temple is still not quite as far out as the right there is still the possibility that he feels it's necessary.

In these last few days leading up to the appointment with the surgeon Lily has not been wearing her helmet during the day, only at night.  Tim and I decided that we are finished with the helmet, Lily developed a fever and caught a cold earlier this week and had to have her helmet off until she was fever free.  On Wednesday I tried putting it back on her and she threw a fit. We figure these last few days aren't going to "make or break" her progress, so we are enjoying her sweet little head.

I pray on Monday we hear the good news that we've been praying and dreaming to hear for the last 4 months.

Thursday, January 17, 2013

Paintings



Over the last year I have found that I really enjoy painting...and I'm not too bad at it!  It is both relaxing and satisfying.  *Let me know if you would like one made for you*  Here are a few -
Oil Painting - Dec. 2011

A rocket ship for this little guy's first birthday.

 A frog for Emilia's second birthday.

For Lillian's baptism

A photo frame (the painting serves as the mat).
A painting I did for our dining room.

For JW's first birthday.



Monday, January 14, 2013

2 Months

Wow, I'm a bit behind.  A lot has happened in the last few weeks, Lily has...

  • taken her first steps
  • flown in an airplane
  • celebrated her first Christmas
  • opened her first Christmas gift
  • played with a lot of people she hasn't seen since she was 2 months old
  • chased/terrorized my in-laws' dogs
  • eaten toast
  • and the big one....GROWN 4.9 mm in the right direction!
Yes, that is right 4.9 mm of growth!  After 2 months in the helmet our ortho did another scan and Lily has had  40% correction, 4.9 mm.  She started with an asymmetry of 12.2 mm and is now down to 7.3 mm of asymmetry.  This is wonderful progress and we pray that the plastic surgeon is just has happy with Lily's progress when we go back to him the end of February.  We hope to hear him say that surgery is no longer on the table and that it doesn't want to have to see us again!  We have a little over a month before we go back to him and we hope she has even more progress even though her growth seems to have slowed down for now.  We won't have another scan before we go but he should be able to look at the visible change.
Beginning 12.2 mm of asymmetry - Current 7.3 mm (goal 6mm or less)
Beginning cephalic index 79.9% - Current 81.4% (goal 80-82%)

Sunday, December 16, 2012

First Steps

Lily took her first steps tonight!  I'm so glad that daddy was home to see this!  9 months and 1 day old.

Tuesday, December 11, 2012

4 Weeks


I'm a little bit behind and we are actually on week 5, but I'll recap and write about week 5 later.
At one month we are incredibly happy with Lily's progress and we know we did the right thing.
Before (left) / 4 weeks (right)
She looks great!  Her head is really evening out and you really can't just look at her and see something "off".


Monday, December 3, 2012

Sleepless Nights and Daytime Cat Naps

So for the last few weeks Lily has had a lot of trouble sleeping.  She goes to bed at 7 pm and she is usually out before she even finishes her bottle.  Then at 9:30 she wakes up and has to be laid back down, this repeats at 10:30.  Often at 10:30 it takes several tries and sometimes rocking to get her back to sleep.  After this she typically has a good stretch until midnight or 3 am.  If she makes it to midnight she'll usually stay asleep until 3 am.  This is when things get tricky and tiring.  At 3 am it is almost impossible for me to get her back to sleep.  She is so restless that she can't be still for very long or she is just wide awake.  It appears that her canine teeth are coming in and that they are really bothering her at night and medicine does not seem to make a difference.  I have called the pediatrician's office and spoken to a nurse who thinks that I should let her cry it out and that she'll go back to sleep...Little does she know, I have one of the most stubborn and determined babies that I (and many others who meet her) have ever seen.  When she wakes she doesn't just lay in her crib and cry, no not Lillian, she stands up (often with her eyes still closed) and screams.  If this doesn't work then she throws herself against the crib and you can hear the loud 'crack' of her helmet.  At this point I have to go in.  So now I try to avoid her hurting herself so once she stands I go in.  The past three nights it has gotten so bad that I have had to take her into the guest room and her and I sleep in the bed there.  This is NOT a habit I want to create but I'm not sure what else to do.

Then there's the issue with naps.  She only naps twice a day and for 20-30 minutes, I've tried getting her to go back down and she won't.  When she's up, she's up and ready to go.  So with being up most of the night and not really having time to lay down when she naps I'm one tired Mommy.

Saturday, December 1, 2012

Tips and Tricks We've Learned

Since being in the helmet we've learned a few things that have made our life easier.  Hopefully this will help someone who has either just started the process or who may be having some kind of issue.  These things worked well for Lily but may not work for all children.

  • Whatever you are feeling - relief to get started, fear, sadness, anger, etc... - it is NORMAL and you aren't alone.  This is an emotional process, as it is would be for anyone who is told that there is something wrong with their child or needs to be corrected.  Do not let anyone tell you how you should feel, they are your feelings, own them and work through them.  Remember that "this too shall pass" and it does get better.
  • Find a support group.  Either online or an actual "in person" group.  It is wonderful to be able to talk to others who are going through the exact same thing as you.  When you are ready, tell your friends and family, most if not all will be supportive...and if they aren't, then remember that this is your child and you are doing what you feel is best.
  • If you have the option of orthotists and companies then check them all out and find what you can afford (most insurance plans/companies will not cover any of this) and an ortho that you are comfortable with.
  • Ask anything and everything when you first visit your ortho and when receiving your helmet.  There are no silly questions when dealing with your child's little head.  Ask about cleanings, scheduling, flexibility of coming into the office when you feel your child needs an adjustment. After your first fitting stay in the office if you can for at least 15 minutes so your ortho or you can check redness before leaving. Make sure you also practice putting it on and taking it off in front of your ortho before you leave.  Ask if you are able to email pictures if needed.
  • Use Aquaphor or Vasiline (I have heard Vitamin E works too) on the contact areas of your baby's head - base of the hairline/neck, behind the ears, cheeks and forehead.  This will really help you with the shock of how red your baby's head will get at first and it also helps to prevent rubbing and opening of the skin which can set you back a week or more.  We do this each time we put the helmet back on.
  • In the beginning, dress your child in clothes that do not require the helmet coming off.  In the winter we found that the light-weight cotton sleepers were perfect.  The heavier fleece ones caused her to be too warm and sweat a lot.  In the summer try buying one size larger of the "envelope" head opening onesies.  This helps to avoid taking off the helmet unnecessarily.
  • For us, we found that it worked best not to do "an hour on, hour off" with the helmet.  We went straight to 4 hours on and then a head check and waited until the redness faded and then it went right back on.  You know your own child and your ortho may stress something else, but we knew that our busy little girl would do better if it became her new normal as quickly as possible.  We did this for two days then our new and current routine is for her to wear it all night, check her head in the morning, wear it all day and then a bath about an hour and a half before bed to clean the helmet, let it dry and bath Lily (and of course a little playtime without the helmet and lots of head kisses!).
  • If you aren't sure if your baby's head is too red or if the helmet is too tight then call your ortho.  Some will let you email pictures and most will try to get you in that very day and they will take a look.  You have paid a lot of money for the helmet and their services and you should be able to go in as often as you feel you need to.
  • Rubbing alcohol works great to clean the helmet.  Others have said that they use their baby's shampoo but we found that the rubbing alcohol reduces the "sweaty cast" smell the most.
As we continue I'll add to this...


Friday, November 30, 2012

Good News

Today we had our first scheduled appointment with Lily's ortho.  After 25 days in the helmet I was afraid that I was seeing what I wanted to see and not what was actually there.  I asked our ortho to look at Lily's head and tell me his opinion.  I was giddy to hear that he was very impressed with her progress!  He said that by appearance alone it looked like the back was almost corrected if not completely corrected and the temple looked like it had made considerable progress.  This of course made me so excited!  He said that Lily was to have another scan at 3 months (February) but he wanted to do one at her next appointment in early January to see where we are.  We will be able to take this scan with us to the surgeon and hopefully hear the words that we have wanted to hear all along..."she does not need surgery".  Based on what our ortho saw today he believes that she may graduate at 4 months instead of 6!!!  This would be just in time for her first birthday, what an amazing way to celebrate!  But of course, I'm trying not to get too excited and if he believes that we need to leave it on the full 6 months then that is fine too and we'll enjoy that extra "baby proofed" time without as many head bumps and bruises, haha!

Words just cannot express how excited I am that this is working.  When the ortho walked out of the room to adjust Lily's helmet I literally jumped up and down while holding Lily, telling her that she did a good job!  I understand that most of this improvement was due to a well timed growth spurt and that progress will probably be slow for a little while now but right now I just don't care about that.  Each millimeter is a huge success!  To know that this is working is worth all of the tears, stress and heartache that we experienced at the beginning of this process.
Before (left) and Day 25 (right)

Tuesday, November 27, 2012

3 Weeks

Today marks 3 weeks that Lily has been in her helmet.  I can say that I never thought I would adjust to seeing it on her little head but, I now have to admit that it really isn't a big deal.  Yes, there are MANY times that I wish she didn't have to wear it but I know that it is helping.  Not only is it helping to round out her head but it has also prevented several trips to the emergency room.  She is one busy little girl and there have been many falls (even with me right there...I don't know how she moves so quickly!) and her helmet has protected her precious little head from many bumps, bruises and maybe even a gash or two.

Yesterday I saw a link to website on the plagiocephaly support group FB page and I had to check it out.  www.tortle.com - If we decide to have anymore children I will be buying one of these to hopefully help prevent plagiocephaly in any future children.  I think that this may also be a great baby shower gift to help prevent other children and their families from this condition.  I wonder if they make them large enough for children who are a year old?  It would be nice to use one to help prevent any regression once the helmet is off.

Tuesday, November 20, 2012

Two Weeks Down

Lily has been in her helmet now for two weeks and although we have had a few bumps along the way things have been going really well.  There appears to be change but until someone tells me that her number of asymmetry has gone down I will continue to worry that it may not be working.  One moment it looks like her head is really rounding out and improving and the next I think that I'm just seeing what I want to see.

Thursday, November 15, 2012

8 Months Old

Today our sweet little girl is turning 8 months.  I am amazed at how quickly this time has passed.  It seems like only yesterday I was giving birth and the doctor announced "It's a GIRL!".  In 8 short months Lily has...

  • Stolen our hearts
  • Made us laugh harder than we ever have
  • Brought the cutest, sweetest smile and giggle into our home
  • Learned to roll over (11 weeks)
  • Learned to sit up on her own
  • Started eating babyfood on 7-21-12 (4 months, 6 days)
  • Got her first tooth at 4 1/2 months (7-30-12)
  • said "Dada" and "Mama" by 7 months
  • Learned to crawl at 7 months
  • 8 teeth by the time she was 7 1/2 months old
  • Learned to pull herself up to stand at 7 1/2 months
  • Learned to stand without pulling herself up by 8 months
  • Taken her first steps with help from a push cart walker at 8 months
At this rate we know that there is no stopping this little, determined, amazing girl!  Happy 8 months Lillian Mary, Mommy and Daddy love you so much and we are so proud of you!

Tuesday, November 13, 2012

Now She ONLY Wants to Stand

Lily found out that she can stand on her own today!  I don't mean that she is pulling herself up by holding onto something, she has been doing that for weeks.  She is sitting in an open area one moment and standing the next!  I am utterly amazed!

Tuesday, November 6, 2012

Day 1

When Lily woke up I cried, I knew that she was going to have to go right into her helmet. I put her into her excersaucer, took a deep breath and on it went. With a huge sigh I had gotten it on without any trouble and she didn't seem to even be aware that it was on. We played and I cried off and on for an hour or two. Then suddenly 4 hours had past and it was time for her to take a break. It easily came off and after an hour all redness was gone and it went back on again. I got really brave that afternoon and decided to take Lily out to vote, helmet and all. People stared and some asked about it but everything was fine. No one made fun of my little girl or made any inappropriate comments, I felt a huge relief wash over me as I realized that if Lily didn't seem to care about her helmet then why should I? She did so well that she slept in it that very first night. She woke several times and was "face sleeping" so I ended up taking her into the guest room to sleep with me for peace of mind. She is such a little champ!

Monday, November 5, 2012

Prayers and Tears

In a little over 3 hours Lily will have her helmet.  I have been kissing and rubbing/holding her little head all morning knowing that from now until May I will only be able to do it for one hour a day.  Today I have a lot of prayers.  I pray that we are doing the right thing.  I pray that she adjusts well and quickly.  I pray that it WORKS.  I pray that I have patience.  I pray for peace in my heart and stop feeling the sadness that has overwhelmed me (at times) since we were told that they wanted to take a closer look at Lily's head.  I pray that I stop feeling guilty and responsible for her plagio.  I pray that there are no negative side effects such as skin irritation that may delay results.  I pray that the helmet fits and we do not have to go through making/paying for another one.  I pray that no matter how little we see results at each visit.  I pray for enough reshaping that surgery is not needed on Lily's forehead, perfectly round is not my prayer.  I pray that each morning I see my baby's beautiful smiling face and not her helmet.  I pray for understanding and support from others.  I pray that we have caught this in time.  I pray that she knows just how much I love her when she is crying for me to take it off.

As I type this tears are streaming down my face.  Tears of sadness knowing that until she gets used to the helmet she is going to cry and want me to take it off of her.  Tears of frustration knowing that I have to do this no matter how badly I want this to fix itself.  Tears of thankfulness that we live in an area that has one of the leading plastic surgeon specialists of children's head abnormalities in case surgery is needed.  Tears of relief that we are able to pay for the helmet while living on one salary.  Tears that praise God that this is not life threatening or damaging to the brain.  These tears make me feel ridiculous for crying when it's not going to do any good.

I know that as Lily's parents we are doing what we need to do and what is in Lily's best interest.  So here we go...

Sunday, November 4, 2012

Helmet Tomorrow!

Tomorrow we begin our journey to "roundness"!  I am filled with mixed emotions, happy because we can correct her head shape and avoid surgery but sad that her pretty little head will be covered for the next 6 months.  I know that the sooner we get started the sooner I can kiss and rub her little head anytime I want.  Last night she kept waking up and crying because her teeth are hurting and each time I would go into her room to rock her I cherished each second that her soft little head with nestled on my shoulder.  At about 3 am I ended up taking her into the guest room and sleeping with her there.  I had gotten up about a dozen times and we both needed to get some sleep.  A part of me loves our little "slumber parties" and waking up to her little smiling face!

I'm praying for peace tomorrow.  I don't want to cry when she gets her helmet put on, I want to smile and tell her how cute she looks.  I don't want her to see any kind of sadness, she's too smart for her own good and I don't want her thinking that this is a bad thing.

Tuesday, October 30, 2012

Ready or Not....


Yesterday was a big day for us and for Lily.  We met with the Ortho to have Lily measured and fitted for her helmet.  It was rough emotionally but I was able to hold it together until last night.  She has a 12 mm difference in symmetry which puts her into the "moderate" category, this was not what I was hoping for.  Sadly, the doctor was not able to give me the magic answers that I wanted.  I wanted to know what number was needed to avoid surgery, he said that is up to Dr. Kelly and that will probably just be a visual check.  So the only thing we can pray for now is that this works well enough that Dr. Kelly is satisfied that surgery is not needed...
Lily's Head 10/29/12

Thursday, October 25, 2012

Getting a Diagnosis

On September 17 Lily and I went in for her 6 month check up, I was not prepared for the pediatrician to recommend that Lily needed to see a plastic surgeon.  She said that she couldn't tell if something was wrong or not.  I dismissed this until I received a call a few days later from their office telling me that I had an appointment on Oct. 1 to meet with one of the leading specialists in children's head abnormalities.  I began to sob.  I called Tim and sobbed some more.  I researched the doctor and found that he specialized in Craniosiosyntosis, a condition that would require my sweet little baby to undergo surgery.  I was terrified.  A little more than two weeks later Lily had a CT scan.  Yesterday we met we the doctor again for the results.  First I praised God when he said that it was not Craniosiosyntosis and that her forehead sutures were not yet calcified.  Then the doctor told us that is was Positional Plagiocephaly and that she needed to be fitted for a helmet to wear 23 hours a day for 4-6 months.  I felt as though someone punched me in the stomach and I lost all air.  Then he went on to say that because of the location of the flat spots it could still require surgery if the helmet does not correct it.  This crushed me.  I had so many questions but couldn't speak, if I did I would start to sob and I already had tears streaming down my face.  My sweet little girl put into a helmet that would hide half of her beautiful face, that would prevent me from kissing her little soft head, that would frustrate her and cause her to cry because she would want it off, that would cause people to look at her and ask "what's wrong with that baby"....
At the moment I don't care if I sound selfish and vain.  I am angry, scared, confused and sad.  I look at her and I don't see anything that would cause concern...but to let this go would risk facial disfigurement and surgery when she gets a little older...we just can't risk that.
I look at her now and see my little girl and break into tears...I have cried so much.  I constantly kiss and hold her little head knowing that it will soon be hidden.  Her beautiful, soft blonde hair hidden behind plastic and foam.  In tears my heart out that I will not feel her little head rest on my shoulder to fall asleep and feel her soft hair on my shoulder, neck and cheek.  This is her favorite spot and my favorite moment of the day and it's being taken away and I'm angry about it!  I'm angry that I feel responsible for putting her onto her side and tummy in the first place.  Originally there was concern about a flat spot on the back of her head and so we changed her sleeping position and now here we are...I can't fit it, I can't fix any of it and I can't take it back.
I know in time we will all get used to it and it will become our normal...until that moment I struggle and pray for peace.