Another cranio update, of sorts….

We have just returned from a visit with our darling daughter’s
ear, nose and throat (ENT) specialist.
It has been found that our daughter has a significant amount of fluid
still in her ears, and this is not a good thing.

To digress a bit, during one of the multitude of surgeries
that Zoey had, they placed tubes in her ears.
In the last month or so her tubes have fallen out (as they should have
and when they should have).  During the
follow up last month some fluid was seen, hence the follow up today.

On Monday the 13th, three days after her third
birthday, our daughter will, once again, have another surgery.  This one will be to place tubes back in her
ears, remove her adenoids and preform a sedated hearing test.  We are in agreement with the specialist that
the adenoids should be removed.  With all
that Zoey has going on there are countless reasons why her estuation tubes may
be blocked.  Removing the adenoids may
not be the ultimate answer, but should still help.

Thankfully this surgery will be much quicker than ANY of the
other procedures that she has had to date.
I just really wish that I could wave a magic wand and make her better,
to have her not go through all of this.
What makes it even more difficult is watching her play, seeing this
bright, happy, active, sweet little girl, trying so hard to just be a kid. Yet
I know that there is yet another surgery, another recovery, another moment that
we must power through.  I am confident
that things will go well, in fact, I am a bit surprised that this advent just
rolls off me.  Perhaps it is due to all
of the other surgeries that she has had, the ones that they open her skull and
reshaping it to allow room for her brain to grow.  Those surgeries take everything out of
me.  Yet, for every single one, we have
joined her in the PICU and find that our stalwart little girl is there waiting
for us, showing us the strength that she has, so we can find our own.

Please, if you remember (trust me, I will be posting updates
anyway) think a happy thought or two for my daughter on Monday April 13th.  Whisper a prayer on the wind for her safety,
and the skill of the surgeon’s.  The
always awesome electradaddy mentioned after my post about the pending eye
surgery that EVERY surgery is important, and a cause to worry.  He is right.

I AM A CRANIO DAD, I am scared out of my mind and when does
my daughter get a break?

An update on my niece

I wanted to take a brief moment and thank all of you that sent your well wishes, thoughts and prayers in the direction of my sweet little niece.  For those of you that are a bit lost as to what I am talking about, see this post here.

As an update, my niece was transferred to another hospital, her meds were changed, and they seem to have the seizures under control.  So much that they have discharged her and sent emergency meds home with her parents (my brother and sister-in-law).

From the bottom of my heart, it means so much to me that those of you out there, many of whom have never met this 18 month old bundle of joy that is my niece, and prayed, reached out to me, reached out through me to my brothers family, donated money to help offset the medical expenses… it is a true amazement that in these times that there is still parts of our society that care enough to step out when they can, and often do so blindly.

I am completely overjoyed to know that my amazing niece is on the road to recovery.  That she is home with her siblings (that missed her very much), and that my brother and sister-in-law are finally (hopefully) able to start getting some rest. There are still many questions that have yet to be answered, but it is my hope that those answers come swiftly and clearly. 

Again, thank you

I will do my best to keep you all posted as she recovers.

I AM A CRANIO DAD, I am scared out of my mind, and we are often called to help those that we do not even know… how do you answer that call?

update

We are working on an update that should be out sometime tomorrow…. just taking time with our amazing, beautiful, strong little girl…. and trying to catch some rest.  We thank all the visitors that have come, that will come, that tried to come… as well as all of you for your love and support that you have expressed for Zoey.  We are not home yet… but we will get there by His grace.  More as and when we can.

And away we go!

So, now that I have been a father for 6 months, I figured that I would try to do a series of postings about what things I have learned from each month.  For those of you that have not been following my story, I figured that I would do a couple of recaps as well.    So, over the next few days, I have a series of postings queued for your enjoyment, knowledge and enlightenment. 

I AM A DAD, I am scared out of my mind, and this has been a fast, amazing, tough six months.

Have any questions?

My wife and I are actively working on an update about this last attempt of surgery for Zoey.  While we do, I have queued a couple of posts about some of the issues that Zoey was born with.  I also want to reach out to all of my beloved readers…. Please feel free to ask me anything?  Sometimes it is through your questions that I am able to do more research, or perhaps it is through my answer that another parent out there in Tumblrville can glean the information that they need.  I am going to try to get back into keeping this up to date…. But things (as usual) are a little crazy.  That being said… ask away!!!!!

I AM A DAD, I am scared out of my mind, and I think that it is perfectly ok for a sweet little 12lb 11 oz baby’s cry to have the effect of reducing this 6’3’’ man into a crying wreck of his former self.

An Update from Zoey:18 Weeks

Hi friends,

Remember me? I’m a little over four months now.  I am 22 ½ inches long and just over 10 pounds.  I kept rolling into the side of the bassinet at night, so Mommy puts me in my big crib to sleep now.  It’s fun because I have room to turn all the way around in circles.  Mom usually finds me with my feet where my head had been the night before.  Since my last update I have started laughing, holding my head up, sitting with help, trying to stand, sucking my fingers, and sleeping through the night.  That last one is probably the most exciting for Daddy and Mommy.  I slept nine hours last night!     

The results of my second round of genetics testing showed that I have an extra copy of genetic material on a small part of my third chromosome (chromosome 3q27 trisomy).  There aren’t any syndromes connected with this genetic addition, so we are not sure if that is the cause of some of my problems.  Mom and Dad gave some blood to be tested last week while I was in the hospital.  They are testing to see if either of them has either the same extra genetic material or another mutation that might have caused the third copy to form in me.  Once again we are waiting for the test results.  I’m glad I didn’t have to give blood this time.    

I went to the hospital on August 8th to undergo what Dad and Mom are calling the “dry run surgery”.  Since I don’t have a rectum, my pediatric surgeon was going to make one.  Usually Dr. Oiticica can see the sphincter muscle contractions so that he knows where to cut, but he couldn’t find mine.  He didn’t want to cut in the wrong place, so instead he just widened the irregular opening that I already have.  Hopefully they will be able to try again during the big surgery early next year.  (I’ll tell you more about the big surgery next time.)  We found out that I am okay with anesthesia, although it makes me really sleepy for about a day afterward.  I also didn’t start eating very much until a few days later.  While I was at the hospital, the doctor cut a little strand that was tying my tongue down to my bottom gums.  I’m now drinking 20 ounces of milk every day.  I’m not sure if the cutting helped me to eat better, but it definitely didn’t hurt. 

We had a follow-up appointment with Dr. Oiticica last Friday so that I could take an x-ray that shows where all my food goes.  We also met with Dr. O afterward.  He told us that I don’t have any stool back-ups, which means that everything comes out in my diaper alright.  (Mommy could have told him that without an x ray.)  He also told us that part of my large intestine is situated over my liver instead of under it.  Eventually we may need to fix that, but we don’t have to worry about that right now.  It was such a fun day.  I got to see trees, big brick buildings, elevators, and lots of other kids on the pediatric floor.  We are going back on Sept 7th so that Dr. O can insert a catheter through my fistula.  He thinks that my rectum is deeper than normal and he wants to see how everything is situated as clearly as he can before attempting the surgery again.   

The nutritionist says I need 24 ounces of fluid every day, so that is my next goal for this month.  Dr. O said my fistula is dilated enough that I will be able to have pureed food when I’m ready for it.  Mom is glad that I won’t have to wait to try out some watery foods.  We will also meet with a group of specialists on August 27th, which will hopefully provide some new answers for us.  It’s hard when Mommy and Daddy find out something new about me almost every week, and it’s hard for them not to have answers.  Please pray that they don’t go crazy with so many doctors wanting to help.  They all think I’m interesting because I’m different, but Mommy and Daddy keep trying to let me be a regular baby as much as they can.  It’s not always easy.  I’m most happy when I get to go outside, climb on Daddy, and cuddle with Mommy.  Hopefully I can do that more this month.                                        

                Lots of love,

                Zoey

    An Update from Zoey: 18 Weeks

    8/17/2012

    Hi friends,

    Remember me? I’m a little over four months now.  I am 22 ½ inches long and just over 10 pounds.  I kept rolling into the side of the bassinet at night, so Mommy puts me in my big crib to sleep now.  It’s fun because I have room to turn all the way around in circles.  Mom usually finds me with my feet where my head had been the night before.  Since my last update I have started laughing, holding my head up, sitting with help, trying to stand, sucking my fingers, and sleeping through the night.  That last one is probably the most exciting for Daddy and Mommy.  I slept nine hours last night!

    The results of my second round of genetics testing showed that I have an extra copy of genetic material on a small part of my third chromosome (chromosome 3q27 trisomy).  There aren’t any syndromes connected with this genetic addition, so we are not sure if that is the cause of some of my problems.  Mom and Dad gave some blood to be tested last week while I was in the hospital.  They are testing to see if either of them has either the same extra genetic material or another mutation that might have caused the third copy to form in me.  Once again we are waiting for the test results.  I’m glad I didn’t have to give blood this time.

    I went to the hospital on August 8th to undergo what Dad and Mom are calling the “dry run surgery”.  Since I don’t have a rectum, my pediatric surgeon was going to make one.  Usually Dr. Oiticica can see the sphincter muscle contractions so that he knows where to cut, but he couldn’t find mine.  He didn’t want to cut in the wrong place, so instead he just widened the irregular opening that I already have.  Hopefully they will be able to try again during the big surgery early next year.  (I’ll tell you more about the big surgery next time.)  We found out that I am okay with anesthesia, although it makes me really sleepy for about a day afterward.  I also didn’t start eating very much until a few days later.  While I was at the hospital, the doctor cut a little strand that was tying my tongue down to my bottom gums.  I’m now drinking 20 ounces of milk every day.  I’m not sure if the cutting helped me to eat better, but it definitely didn’t hurt.

    We had a follow-up appointment with Dr. Oiticica last Friday so that I could take an x-ray that shows where all my food goes.  We also met with Dr. O afterward.  He told us that I don’t have any stool back-ups, which means that everything comes out in my diaper alright.  (Mommy could have told him that without an x ray.)  He also told us that part of my large intestine is situated over my liver instead of under it.  Eventually we may need to fix that, but we don’t have to worry about that right now.  It was such a fun day.  I got to see trees, big brick buildings, elevators, and lots of other kids on the pediatric floor.  We are going back on Sept 7th so that Dr. O can insert a catheter through my fistula.  He thinks that my rectum is deeper than normal and he wants to see how everything is situated as clearly as he can before attempting the surgery again.      

    The nutritionist says I need 24 ounces of fluid every day, so that is my next goal for this month.  Dr. O said my fistula is dilated enough that I will be able to have pureed food when I’m ready for it.  Mom is glad that I won’t have to wait to try out some watery foods.  We will also meet with a group of specialists on August 27th, which will hopefully provide some new answers for us.  It’s hard when Mommy and Daddy find out something new about me almost every week, and it’s hard for them not to have answers.  Please pray that they don’t go crazy with so many doctors wanting to help.  They all think I’m interesting because I’m different, but Mommy and Daddy keep trying to let me be a regular baby as much as they can.  It’s not always easy.  I’m most happy when I get to go outside, climb on Daddy, and cuddle with Mommy.  Hopefully I can do that more this month.

                    Lots of love,

                    Zoey

      Update from Zoey: 12 Weeks

      7/03/2012

      An Update from Zoey: 12 Weeks

      Hi friends,

      I’m almost three months old and I’ve been changing a lot lately.  I’m growing a little round belly and a rounder face.  I am almost 22 inches and weigh 8 pounds, 11 ounces.  I’m also smiling and kicking my feet a lot.  I can raise my head, imitate sounds, and I’m working on rolling over.  I would be able to crawl if my knees would just stay on the ground.

      Mom got a phone call from the genetics lab and they told her that I tested 85% negative for the three top syndromes the doctors suggested that I might have.  This means I don’t have Apert Syndrome, like everyone thought.  This was a huge surprise for us.  I went back to the genetics doctor in June for a follow up and learned that they have a few other possible syndromes that they want to check for.  A nurse drew six vials of blood from me for more testing.  I cried a little bit when the needle went in, but it was okay after that.  We will find out the test results in another month or so.

      A really nice Speech Therapist named Kerry comes to see me every week and watch me drink my bottle at home.  She gives my mom advice on how to keep me focused and awake so that I can eat more consistently.  I’m now drinking about 15 ounces of milk each day with a little bit of formula mixed in for more calories.  I’m already doing much better with my feeding and we are hopeful that I won’t ever need a feeding tube again.  I’m also going to have a Physical Therapist visit me every other week to work on my muscle coordination, especially in my feet.  Some of my toes are fused together and don’t like to uncurl them.  I want to have strong muscles when I begin to stand, walk, and find my balance on my feet.  It will also be really nice to have someone to help me recover from each procedure.

      I have a big appointment this week with Dr Oiticica, a pediatric surgeon.  He will be scheduling a date with us for my PSAP (posterior sagittal anoplasty) surgery.  Originally it was supposed to be when I turned three months, but it may be a little bit later since I’m still doing so well.  I will be recovering for a day or two in the hospital after the surgery before going back home.  Things could have been much more difficult for me if I didn’t have a large enough fistula.   Since I do, I haven’t needed a temporary colostomy like most of the other kids with abnormal or absent rectums.  This is another area where we know that God has been looking after me.

      I think that’s about all for now.  It has been a busy few months for our whole family.  Thanks so much for all your prayers and encouragement.

      Lots of love, XOXO,

      Zoey

        Update from Zoey: 1 Month

        5/11/2012

        An Update from Zoey: 1 Month

        Hi friends,

        Guess what? I’m a month old now.  I was allowed to go home from the NICU on April 21st, which means I stayed there for almost two weeks.  Mom and Dad stayed with me in my room the whole time, and we were all ready to go home by then.    Most of the time was spent taking x-rays, scans, taking different tests, and rapidly increasing my feeding amounts to get me back to “normal”.  The test results were really positive: all of my internal organs function well, I passed my vision and hearing tests, my digestive system processes my milk very fast (which means I don’t have any blockages), my MRI was clean, and my toes have all of their separate bones and some are only joined at the skin level.  This means that it will not be a lot of work to separate the toes that are fused later on.  One of the nurses called me a big baby, considering most of the others in the NICU are less than 4 pounds.  It made us all realize how much healthier I am than most of the other babies in there.  Mom and Dad talked with a few of the other new parents, and many of them are facing months of critical care.  It’s hard to feel sorry for myself in a place like that, and also to feel blessed that God has spared me from many more serious problems.

        My pediatrician said I was 6 pounds 10 ounces and 19 inches long when I visited him on April 24th.  That means I’ve already gained back all my birth weight plus 4 ounces.  I’ve been drinking a lot of milk since then, and Mom thinks I’m over 7 pounds now.  I’ve been eating so well on my own that Mom even took out my feeding tube.  It’s really nice to breathe better now that my nose and throat aren’t as irritated or congested.  The doctors want me to be weighed every week just to make sure I’m still gaining weight.  We’re also in the process of registering for state and federal assistance with all of my hospital bills.  We have insurance, but monthly visits with seven doctors, a few big surgeries, and two weeks in the NICU is a lot for regular insurance to cover.  When you think of me, please pray that God will provide ways to pay for this great care I’ve been receiving.  If you are interested in learning more about my doctors, the main team works for the Virginia Commonwealth University Center for Craniofacial Care in Richmond.  It is an amazing blessing that I was born in a hospital where some of the best craniofacial specialists in the area work.  I think maybe God planned ahead for me.

        So much has happened over the last month.  I have had so many visitors, which has been fun and exhausting.  A few weeks ago my Grandpa and Grandma came all the way from Indiana to come visit me!  I had so much fun!  It always seemed that I was being loved on and held, so I would return the favor by sleeping.  I cannot wait to get a little older so that I can have my mom and dad take me all the way to Indiana to see them again.  While Grandpa and Grandma were visiting, Aunt Em and Uncle Patrick came in to see me too.  I remembered Aunt Em from my time in the NICU, and Uncle Patrick looks a little like my dad.  I think that I am going to like him a lot, he seems like a nice guy.  My Aunt Amy is visiting me now.  She has been helping my mommy and daddy and she is really good at taking care of me.  She feeds me, and changes me, and plays with me.  It is so much fun that I do not want to go to sleep sometimes.  There were lots and lots of pictures taken, but I do not mind.  The flashing use to hurt my eyes, but not anymore.
        There was one night that I was not feeling so good-I think it was too hot.  Daddy took my blanket off and stuck this thing behind my ear and I heard a beep.  Next thing I know, mommy was holding me and daddy was turning on the light (which was really bright) and putting cold things on me.  Mommy was talking to me softly and singing a little.  I did not like the cold.  But in no time at all, I was snuggled back up, the light was off and I slept for what seemed like forever.  Another time my dad was a little scared about something.  My Gigi came over to take care of me and he took my mommy somewhere.  I found out later that mommy had to go see the doctor for an infection.  I just hope that they were as nice to her as the ones that I had in the NICU.  I was able to spend some time with my Gigi, and that is always fun.
        I have also gotten to know my dog Salem.  She is a big black border collie that seems to always be around.  She is really good about letting Mommy or Daddy know when I need a diaper, or I am hungry, or I just want to be held.  She keeps licking my hands and feet and her tongue is wet and cold… sometimes it makes me shiver.

        Yesterday I went to see the eye doctor.  I don’t close my eyes all the way when I sleep sometimes, so Mom and Dad have been putting eye lubricant in my eyes a few times each day.  The eye doctor recommended that we add some drops too, just to make sure my eyes stay in good shape.  I don’t like having so many things put in my eyes, but I am happy that I can look around for every sound I hear.  Even though I don’t close my eyes all the time, there has been no damage to my retinas or corneas.  My pupils also respond well to light.  We will be coming back when I’m six months old so that the doctor can continue to monitor my vision.  He also referred me to an oculoplastic surgeon to evaluate the structures of my eyes and eyelids.  So yes, I have one more specialist to charm in two months.

        I’m surprised at how many doctors are interested in me.  I must be pretty special.  I am continuing to grow and I try to impress my mom and dad with my strength every day.  I have been working really hard at lifting my head.  I like to see who is holding me.  When I do lift my head, if my daddy is holding me he showers me with kisses.  His beard tickles, but that is ok.  My mommy and daddy keep saying that my eyes are beautiful.  Daddy always says that I have my mommy’s eyes and his flakes.  Perhaps someday I will understand that, but it must be pretty cool.  Thanks for being my friends and praying so much for me.

        Lots of love, XOXO,

        Zoey