Friday, April 20, 2012

Lucy's 2nd Month - November 17th to December 17th

  We dismissed the x-rays that had been taken over Halloween.  We knew that Lucy's bones were shaped a little different.  We knew that since before she was born.  It didn't change anything and we didn't see the need to have her poked and prodded unless it was medically necessary.  The last week of November was fairly quiet after a whirlwind beginning.
Silly Girl - Nov. 20, 2011
Visiting Santa at the Mall - Nov. 18, 2001
   Lucy had a high arched palate, which meant you had to have a "special" touch when feeding her.  You had to know exactly how to hold the bottle to get her to actually suck.  Which meant Jason and I never really got a break from that duty...but that's OK. I actually love that duty, but grandparents were not able to help out much. Also, it meant that she didn't hold on to her pacifier very well.  She still had reflux so she slept propped up. Which meant she didn't sleep very well.  She also got up every 3 hours SCREAMING to eat.  We were REALLY tired.  (Looking back - she may have been going "nuclear" because she was in pain.  We just thought she was hungry.)
Sleeping in the boppy - Nov. 22, 2011
   Gradually, she started holding her paci better.  She smiled a lot.  She started to coo.  She seemed to be perfectly happy and really only cried when she was hungry.  (We know now, that it was because she was healing.)
Sharing a secret with Sister - Nov. 23, 2011
Pajama Day at school - Nov. 23, 2011
   Like I said, everything was rosy.  Then came Thanksgiving.  That day we went to see my Dad's family first.  She was passed around to several family members, but she slept through most of it, and didn't seem to mind at all.
My MawMaw Wilson - Thanksgiving Day - Nov. 24, 2011 
   Thanksgiving night, our whole family gathered at my mothers for Thanksgiving dinner.  Lucy spent most of the time sleeping, as usual.  That night, she spit up and needed her clothes changed.  My sister-n-law tried to change her onesie, then my mother tried to change her onesie. This wasn't a difficult task, but Lucy was screaming like they were killing her.  I arrogantly thought "Come on guys, cant you change a shirt?"  I came over to where they were changing her and took over trying to get her arms into a clean onesie.  Lucy was hysterical.  I thought it was just because we had disturbed her sleep, and she was getting cold while being changed.  After she was changed she settled back down and went to sleep.

   The next day, I stayed home with Lucy and Jason took Ella to our nephew's birthday party.
Luke's Birthday Party - Nov. 25, 2011
Luke's Birthday Party - Nov. 25, 2011

   The next night, I noticed that Lucy was not using her left arm.  She was letting it dangle by her side.  I watched her the whole next day, Sunday, she did not use it at all. I would pick it up and move it for her.  She didn't cry much but she didn't try to move it herself either.  Her left shoulder looked higher than her right, but she was still able to move her fingers.  She was obviously more uncomfortable but there were several things I could have attributed that to: reflux, cold sensitivity, hunger.  I still wasnt sure if there was a problem.
Snuggling with Sister Nov. 26, 2011 
Ella and Poppy trying to figure out which light is out on the Tree.  Nov. 27, 2011
   The morning of the 28th, that Monday, it just so happened to also be the day of our appointment with our geneticist.  I was so thankful to have a Dr's appt. that morning.  Our Dr. ordered another skeletal survey, she said that I didn't let them get enough x-rays the last time, plus some thing might have changed since she had had some time to grow.  OK? She had 15 or more x-rays that day alone.  Our geneticist looked her over, took a family history, and sent us on our way.  She said that it could be a long time before we had a diagnosis but we had to start somewhere.  That's it.
    SOOOO...we left there and took her to the pediatrician.  She looked at her arm and her range of movement and decided to wait until a radiologist could review the x-rays, because she didn't think it was dislocated.   That night she called.  She told me that the radiologist observed that Lucy had 5 healing rib fractures!!  The fractures appeared to be in different stages of healing, so they could not say if they all happened at birth.  I was expecting a phone call from the Dr, but certainly nothing like this.  I was stunned!
From Lucy 1 to 2 months
   She said that the radiologist didn't see anything wrong with her arm and thought that she probably wasn't moving it because her ribs were hurting.  I guess that made sense. She talked to me for a very long time.  She gave me her cell phone number.  She was really wonderful.  Im sure she knew that I was in shock. She assured me that they were not concerned about child abuse.  Oh my goodness!  I was very thankful, but that had not even crossed my mind!  Sometimes I wish that I had never known what was going on with her bones prenatally. All those months of worry, for seemingly nothing.  At that moment I was so thankful to have all of that history!  This could be a very different story otherwise!!  We could have been fighting to keep our child!! Our pediatrician told us that they didn't do anything for broken ribs and they didn't want to give her anything for pain because that might mask fever, and being so young, that was more dangerous than her hurting.  Uggh!!  She told me to try to just keep her as comfortable as possible.  We carried her around on a foam pad for a couple of days.
One Armed Wonder!  Dec. 1, 2011
When we felt like she was hurting, we wrapped her up to see if it would help. Dec. 1, 2011 

    Our geneticist called and recommended that we have Lucy tested for Ehlers-Danlos and Kniest.  Two very different skeletal dysplasias! 

Skeletal dysplasias are bone and cartilage disorders that affect the growth and development of the skeleton and result in short stature and dwarfism.

    We followed up with her a week later for Lucy's 2 month well-baby check-up, she had made us an appt. with an orthopedic surgeon and an opthamologist.  The ortho because of the breaks and the Opthamologist because several dysplasias also have eye involvement to a varying degree.  Hearing and vision impairment are fairly common in several types of dwarfism.  She passed her hearing test in the hospital when she was born.

     We saw Dr. Gilbert an orthopedist at children's hospital the next day.  He thought that Lucy might have had a stress fracture in her left ulna (forearm) after all.  It would have been caused over a period of time and use.  Not all at once, like with an actual break.  He pointed out that Lucy could have some C-spine instability and suggested that we see neurosurgery.  I didn't know what that meant then.  He didn't emphasize it, so I didn't strike me as something serious to worry about.  He said that there wasn't any direct medical or surgical treatment for her at this stage and for us to just continue with gentle handling.  His notes say - "Will plan to see them back as needed when she developes fractures or deformity."  Reading these notes back, now that I have a whole new perspective, it is really upsetting.  Some Dr.s just tiptoe around...scared to tell you anything.
   Since Lucy was feeling better and the Dr. didn't indicate there was anything to worry about, we were out and about agian.  We went to see BIG sister's Christmas program at school!

Christmas program at school - Dec. 8, 2011
Dec. 8, 2011

That Friday, the 9th, we saw Dr. Elsas, concerning her eyes.  He said they were perfect!  Thank you Lord Jesus!  We needed a little good news.

Dec. 10, 2011
Dickerson Family Christmas Party - Dec. 10, 2011
She started using her arm a little more everyday!!

Dickerson Family Christmas Party - Dec. 10, 2011
Pee-Pie!  Dec. 10, 2011
MawMaw and PaPaw Dickerson - Dec. 10, 2011
Look at me using my arm!! Dec. 12, 2011
 Christmas with Poppy and Cici - Dec. 17th, 2011
Christmas with Poppy and Cici - Dec. 17th, 2011

Christmas with Poppy and Cici - Dec. 17th, 2011

Worn Out! - Dec. 17th, 2011
2 months old!  Dec. 17th, 2011
We were still being really cautious, but with Christmas rapidly approaching, the Slye family was busy, busy, busy!  She turned 2 months on December 17th and seemed to be doing great!

2 Months!!!