Recovering from Christmas

We have been so busy with the Holiday and family, I have forgotten to post and update everyone on how I'm doing.  After spending time in all the outfits that Aunt Destin made for me I was plum worn out.

Geaux LSU!!!

I have been working really hard on using my hands.  I still have a ways to go, but really want to play with the new toys Santa brought me.  I still struggle with tummy time and sitting.  We feel things would move along if we could get my tummy issues under control.

On the other hand I'm not sure how much I'm enjoying Aidan's new toy.....a flying shark.  He loves to fly it at my head.  Apparently it make for a good laugh.

But no matter how often Aidan gets me with his shark......he makes me laugh.  I love my big brother.

It's been a very long week with my tummy issues.  Mommy has a call in to my GI doc to help make more med adjustments.  We are keeping our fingers crossed.

Hands and more Christmas Cheer

We started off this week with Chiro.  K has been working really hard on trying to monitor the plates in my head to make sure everything is even and there is minimal pressure building up.  Has has also been trying everything she can to help with my pooping and reflux.  She has been working her magic and I continue to go weekly.

On Tuesday Julie (OT) showed up for out weekly appt.  After a very difficult session she reported to Mommy she was concerned I might have a fracture in my left arm.  After multiple call to my peds office we go in to rule out Nurse Maids Elbow.  Dr. E laughed when we got there saying all I did was laugh and smile and that was nothing wrong.

Yes check this out 29 inches long and 18.5 pounds.  (95 percentile for length)

Now up to this point I was having extreme difficulty even moving my hands/arms except to suck my thumb and really struggled with my left one.  We were sent on out way and directly to PT where Beth (PT) was waiting.  Mommy was in the other room for a moment when she heard Grandma and Beth yelling for her to come into the room.  Well I can't tell you what changed, but I decided to use my hands.  It was like someone turned on a switch.  I immediately grabbed a toy and began shaking it all around.  For a hour straight I grabbed toys.  There were so many tears between Beth, Grandma and Mommy and Daddy even rushed home from work early to see the excitement.

Aidan doing tummy time with me.

I continue to have major issues with pooping.  We had a follow up appt with my poop doc and came up with a plan.  We will see how that works out.

At the GI docs office.

Marmee and Papou are in town now and cannot believe all the changes that have been going on.  After a big winter's snow we decided to brave the elements and the car and I went to visit Santa.  I managed the 10 minute drive there with no issues but the return home was another issue.  After the holidays Mommy and Julie (OT) will be working on my inability to ride in a car.......not sure what I think of that one. 

I have the best brother ever.  When Mommy was walking over to get us from Santa she over heard Santa ask Aidan what he wanted for Christmas, his reply......"a remote control helicopter and for you to make my sister better."

 MERRY CHRISTMAS everyone.  We are so thankful for all your support and prayers.

My big Brother

Today was just an ordinary day.  So, while Mommy and Daddy were getting the house ready for company Aidan got into my bed just to hang out with me. 

I have the best big brother.   He talked to me, told me stories and sang songs.

Then came snuggle time......

He helped Mommy get me ready for my nap.....kissed me goodnight......and off to sleep I went.

Therapies

Oops.  Mommy and I just realized we haven't posted in days.  Mommy says it's because she is still in shock over the news we received on Tuesday.  Well with all the hype out of the way I have been put back on track with what seems like greater expectations.  My doctors informed Mommy that the only thing we can do is to hit me hard with therapies.  It's not like I didn't have a full schedule to begin with, but Mommy some how managed to get Speech Therapy added once a week and is working on Music Therapy as well.  I was informed by Mommy and Daddy that the "roadblock", the encephalopathy, was gone and their expectations were greater.  WOW.....they weren't kidding.  They even have Kelly, my Nanny, helping me with exercises.  They haven't corrupted Aunt Destin yet so there is still hope of someone who will just snuggle with me.

We are still trying to figure out the tummy issues.  The vegetable syrup the doc has me on works.....sometimes it works too well.  We are trying to find the right dosing with my diet which is changing with the addition of solids.  The problem we are running into now is this the concern of dependency that can happen with the syrup.  So we are still trying to figure out why I can't go on my own.  Mommy had thought it was related to the encephalopathy, but that's not the case anymore.  I follow up with the doctor next week.

Mommy had to run out to the store today as I have seem to hit another growth spurt.  I'm now in 12 month clothes.  My sleepers were rubbing the skin off my toes.  I seem to be following in the footsteps of my brother......I'm gonna be a big girl. 

Miracle....Christmas Magic.....

Mommy and I talked today and I decided to let her write the blog today since we have such big news to share....so here we go....

Jim and I had decided a month ago to get a updated EEG on Harper for several reasons.  We do not like putting her through the inconvenience of having them but since she is now off all her anit-convulsants we felt we were at a cross roads.  The problem we were having was even though we were beyond thankful that her seizures had stopped (a miracle in its self - and they could come back at any moment) we wanted to treat the background chaos in her EEG (encephalopathy).  We were told that having seizures from birth can cause major delays in ones development as the neuro pathways are developing and the seizures have a significant impact on their formation.  Then you add the chaos and we were told that at the level she was she would be lucky in she ever left the NICU much less progress to the point she is now.  Again another miracle.  Our Neurologist at Children's has made it VERY clear that he has no interest in treating Harper's background chaos as 1. he feels it cannot be done and 2.  He is literally sacred to do anything with her since he cannot believe the strides she was made.  So this lead us to where we are now.....doctor shopping and needing an updated EEG to show them what they would be working with.

After an crazy weekend focused on Harper's pooping we still had not heard back from her doctor about her results.  Usually they call me during the EEG to update us.  I decided I would call them on Monday and rock the boat as that seems to be what I'm best at doing these days.  After leaving a message on the nursing line with no hopes of hearing back from anyone I headed off to school to get Aidan.  Jim and I were prepared to hear that her results were either worse or unchanged, but the phone call I received was neither of those two.  The nurse, one of whom I have never talked to before, in a very nonchalant way preceded to tell me Harper's EEG was "normal".  After I literally picked the phone up off the ground I informed her that that was not possible and she must mean "normal" for Harper, AKA still the same level of chaos.  She and I went back and forth several times and I finally informed her that I needed to talk to one of our doctors as "normal" was not possible.  After a hysterical call to Jim, he agreed that she must have misspoken and I should continue to reach a doctor.  Later last night we received an unexpected phone call from Dr. S, Harper's pediatrician.  She was calling us to see if we had been in touch with anyone regarding Harper's EEG results as she was looking at the report stating her EEG was in fact NORMAL!!!!  She was very surprised.  Again Jim and I questioned who interpreted the results and were still feeling things were not as being stated. 

This morning I received the anticipated phone call from one of Harper's doctors.  She confirmed what we were being told.  Her EEG is NORMAL, the encephalopathy is gone.  If we put her EEG next to another 7 month old no one would be able to tell the difference.  They are dropping her diagnosis and her main treatment at this point are her therapies.  

So what does all this mean.  No one knows.  Only time will tell.  Her Neurologist said she clearly has delays, but it is possible for her to meat each milestone in her own time.  Again something we never thought possible.  A miracle indeed.  We are scared, a new kind of sacred, we are scared to believe that this is true, but are moving forward with this gift and all that it brings.  Jim and I want to thank everyone for all your thoughts, kind words, prayers, gifts, and understanding.  We are so blessed to have this little miracle in our lives and we would not have it any other way.  She is amazing and that is only amplified by the love she has for her brother.  

Tonight we celebrate!!!  The celebration we should have had when she came home from the hospital, but were denied.

Scotty and Jim

Waiting....

And the games begin.  We sit here and wait to hear from the doctors about the results of my EEG from last week.  While waiting we focused on my tummy issues.  I started some new meds for my tummy.....a vegetable extract that is to stimulate my bowels.  Well it worked.  There was major pooping over the weekend.....it came with much discomfort, screaming, and stiffness.....but it came and soon relief did as well.

This is what happens when you get rid of 7 days worth of solids.  Excuse Mommy (she's in her robe), but she wanted me to post this video anyway. Turn your sound up.....

This is our happy sound!!!!  Mommy and Daddy are so thankful to hear my sounds.

Hoping for Christmas Magic

What an intense past few days.  On Wednesday Mommy finally got me into another GI specialists to get another opinion.  After we waited for an hour and a half the doc finally came in and did not have much more to offer than the past docs.  Basically he stated the obvious.  We will try a few tricks and are hoping they work.

On Thursday I had PT and Ms. Beth said she thought I was getting stronger in my shoulders.  This is good news since my lack of shoulder and trunk strength are what are preventing me from sitting.  I am working really hard and we are hoping that as soon as we get my tummy issues under control I will be able to practice sitting.

Today was an intense day.  After much discussion between my parents we decided to have another EEG.  Since I am officially off all anti-convulsants we wanted to see how things are going.  So off to Children's Hospital today we went.  It was a sleep deprived EEG so Mommy had to keep me awake most of the day and that just equaled much screaming.  Things escalated so much that Mommy called the hospital begging them to get me in earlier.  They did......but I screamed the entire way evlessen though Aunt Destin was doing her best to calm me down.  The three of us are VERY thankful that the hospital is less than 10 minutes away......well at least the way Mommy drives.

 After much trying I finally calmed down a fell asleep.  We are not expecting to hear results anytime soon since we scared the doctor the last time we saw her.  Mommy and Aunt Destin tried their best to get the EEG tech to tell us what she saw, but she wouldn't give.  So we are left with a weekend to pray and hope for Christmas Magic that all looks the same or better than before and that the hypsarrhythmia has not come back. 

After a crazy ride home it was great to be back in my own swing and to see my brother.  He apparently has a great time learning about dinosaurs with Ms. Kelly.  So we ended these past few days by having some family snuggle time on the couch watching Frosty the Snowman.

Here we go again

Repeat of last week.  Tummy......tummy......tummy.  After a difficult time working things out over the weekend we started the same pattern again yesterday. Aunt Destin and Uncle Widg came to help out since Daddy is out of town on a work trip.  My tummy got the best of me last night and I screamed for 3 hours and then just passed out from exhaustion.  Ms Julie came this morning for OT and I was not happy.  After she letf Mommy ended up having to give me an enema.  After a 3 hour nap to recover from last night Ms Beth was here for PT.  WOW, what a great session.  I sat up (prop sitting) for almost 2 minutes. 

After such a workout I had some snuggle time with Grandma.  After Mommy got home with Aidan she found a gift in the mailbox......thanks Emily for my awesome headband......

Tomorrow I go in for another GI consult to see what is going on with my bottom half.  Hopefully they can help us figure out what is going on with me.

Holiday spirit

Mommy was going through some old photos and decided to "recreate" something from the past.  So see if you can tell which pic is of me because the other is of Aidan taken December 2006.  Happy guessing!!

Yesterday I had a rough go of it.  I slept less than an hour all day and screamed and fussed all afternoon if someone was not holding me.  That made it difficult for Mommy and Daddy who were trying to set up the Christmas tree.  Mommy and Aidan went to pick out a tree and returned with a "giant" tree.....so  big we had to saw the bottom sides just to get it to fit in the tree stand.  Daddy made it clear that he is in charge of tree shopping next year.  So between my tummy hurting/screaming and the tree episode it took us 5 hours just to get the tree in the stand.  Half my toys have been moved to the other room as there is not enough space. 

With such a stressful day I finally fell asleep around 7pm and slept till 7 this morning. 

Two great things happened over the last few days.  Firstly I finished my meds.  I am no longer on any anti-convulsants.  Only tummy meds for me!!!  This is a Holiday miracle that we thought would never come true.  Yeah..... 

Second - I have been using my hands.  Alright let me explain.  I am not using my hands the way a 7 month old does, but I have been moving my fingers and have even grabbed a toy (if placed right next to my hand) a few times.  I still struggle using my arms.  PT/OT have really been working with Mommy and Daddy on that one. Yet another reason to celebrate in our home.

Damn tummy

Here we go again......

So the culprit this time ..... solid food.  As you know I have been struggling with the basics of having a bowel movement.  After having several weeks of increased discomfort the "fit hit the shan".  I have not been able go at all since Turkey Day and with all the solids, like Oatmeal, I have had were the icing on the cake.  So after a few days of consulting with Dr. S we came up with a solution.  WOW did it work.....after just 10 minutes I went....5 diapers, 2 changing pads, new PJ's, and much laundry later I am sound asleep.  Sleep has alluded me all day due to my tummy.  Mommy and I are hoping I sleep tonight and tomorrow.  A cold winter day is predicted for tomorrow and I am hoping to enjoy the snow between naps.

Caught in the Act

Mommy has been trying for some time to catch me on video laughing, but up until now I have managed to elude her. 

There is nothing I enjoy better than watching my brother run around and listen to him laugh.