1st anniversary of our diagnosis day

   Ok, first of all, let's pretend.  Let's pretend that I posted this on Friday (3/11).  Let's pretend that I didn't delete this 3 times and write it 4 times.  Let's pretend that I didn't cry the entire time that I typed this.  Let's pretend that March 11th is nothing more than just a day.  Let's just pretend...

   Today, March 11th, is bittersweet.  This day last year was the hardest day of my life thus far.  One year ago, Matt and I walked into the obgyn's office excited to find out the sex of our baby.  We were so oblivious to the fact that the ultrasound that was going to be done wasn't only going to tell us the sex of the baby, but that it's main purpose was to check the well being of the baby.  To make sure that everything was looking ok and that the baby was healthy and that everything was developing and working like it should.  We, like all other soon to be parents, never imagined being told that our child had something wrong with them.

   There are certain things that I can remember us saying during the ultrasound.  I remember Matt asking about the shape of Jackson's head.  I remember thinking that the ultrasound tech was focusing on Jackson's back more than any other part of his body.  I remember Matt and I talking about the baby being a boy and that my family was wrong, we broke the "all-girl curse."  I remember him saying that he couldn't wait to deliver the news.  I remember being so extremely happy, so excited, so in love.  We were sent out to the waiting room and I remember us looking at the ultrasound pictures. I started looking on Pinterest for ideas for the nursery.  At one point, we started to question what was taking so long and decided that it must have been that they were so busy.

   When we were taken back to the exam room, I remember us sitting in the room still on a happy high and talking.  I remember the doctor walking in and my heart immediately sank.  My OB/GYN is a very bubbly person and always has a smile on his face.  When he entered the room, he was neither bubbly or with a smile.  I knew...I just knew that something wasn't right.  I think I tried to convince myself that maybe it was just an off day.  He started talking about the baby and explaining that all of his organs were developing properly and were working like they should.  He gave us all the good news first, followed by the "However, there was something found to be of a concern."  That was the first time we heard the words "spina bifida."  The first time that we realized that we were, in fact, not immune.  The first time that I tried to convince myself that everything would be ok even though I knew nothing about spina bifida.  The first of many, many tears to be shed.  

   I remember laughing at the fact that we declined having the genetic test and blood work done at the previous doctor's appointment.  We were so positive that nothing would be wrong.  We truly had the "it won't happen to us" mentality.  I remember thinking that what was happening couldn't be real.  I tried to convince myself that I was dreaming... I was in an awful dream and I couldn't wake up.  "Please wake up, wake up Crystal!"

   During the conversation with the doctor, the phrase "possible low quality of life" along with the word "termination" was thrown out there.  We were given cold, hard facts.  An opening in the spine - spina bifida.  Myelomeningocele, the most severe form of spina bifida.  Paralysis of the lower extremities.  'Lemon' and 'banana' signs - Chiari malformation, the brain is being pulled backwards - possible brain damage - hydrocephalus.  Clubbed feet.  We were confused, scared, and angry.  How could this happen?  What did I do wrong?  I took my prenatal vitamins everyday.  I tried to eat right.  I cut out caffeine and ate more vegetables and fruit.  I remember being so angry at God.  I couldn't understand why he would do this to me, to us, to our unborn child.

   My doctor tried to comfort us in the best way that he could.  I remember being numb when he hugged me and explained that he was going to get us an appointment with the maternal fetal medicine doctor.  I remember him saying that he was sorry to deliver such news.  I remember him telling us to take as much time as we needed and I watched the door close.  I immediately fell apart.  I wanted to run away.  I wanted to wake up from this awful dream.  I remember Matt grabbing me and holding on to me while I officially broke-down.  It's strange some of the things that you can remember even though they aren't relevant to your story.  For example, I remember the woman in the next room telling her child that as soon as she was checked out by the doctor. they would leave and get some ice cream.  When we left, we were given the information about our appointment with the maternal fetal medicine doctor.  I was thankful that she would be able to see us the next day.  I'm not sure I could have handled waiting longer than that.  

   I remember us going to the truck, still numb, not really talking, but still trying to comfort each other.  We left the doctor's office and went to meet with Matt's mom.  I remember us pulling into the parking lot at the Avenue, we tried to put a smile on our faces, but we failed.  Matt's mom immediately knew that something was wrong.  I remember Matt trying to fumble through telling her what was going on while trying not to completely fall apart.  We were just suppose to tell her that the baby was a boy, not that he had something wrong.  I remember calling my parents.  They were anxiously waiting for the news.  I held my calm long enough to tell them that there was a problem.  I couldn't even get out that the baby was boy.  Matt's mom took over while I sobbed and Matt rubbed my arm, trying to calm me.  I remember Matt taking a picture of my belly shortly after we got home so that we could send it to my family.  It was so extremely hard to act like everything was fine when deep down we were both so hurt and scared.      

   We had so many questions.  What do you do when you have questions?  You Google, of course!  Yeah...wrong decision!  I tried to find all the positive stories.  I wanted to find the hope that everything was to be ok.  I did find some positive, but I also found a lot of scary and negative.  I kept telling myself that the doctor could have been wrong.  He admitted that this was only the 2nd time he has ever had to make this diagnosis.  He told us that he thought the lesion was low and that it didn't appear to be large, which, in his opinion, was a good thing.  I hung on to his words.  I prayed that he was wrong about Jackson having spina bifida, but if he wasn't wrong, I prayed that he was correct about the location and the size of the lesion.  I prayed and I hung on to hope, but I was still so scared. Neither Matt nor myself slept very well that night.  I did my own research while he did his own.  We compared what we found, but still kept trying to tell ourselves that the doctor could have been wrong.  
   If I could go back in time I would tell myself that everything would be ok.  I would tell myself to believe in the fact that Matt and I were chosen to be Jackson's parents.  For whatever reason, Jackson was entrusted to us, to provide the best for him, to help him grow and succeed at everything put in front in him.  I would go back and make myself take a deep breath.  I would make sure that I didn't Google and would wait for true answers from a doctor.  I would tell myself to not shed a single tear.  Better yet, I would wish to fast forward to this moment, one year after diagnosis, to see how amazing Jackson is and what a wonderful life he is leading.      

   It hasn't been easy by any means.  There have been a lot of stressful situations, but there have also been situations where we sit back and laugh at how scared and worried we were.  On this day last year, we never could have imagined how beautiful and amazing life would become once our son was be born.  No one told us how his smile would make the worst moment, the best.  How his smile would light up a room and that his giggle would be contagious.  No one told us that he would meet his milestones and that he is very smart and curious about everything around him.  No one told us that we would celebrate every milestone, no matter how small.  That we would jump up and down, cheer, and even cry when he sat up for the first time.  No one told us how "normal" life would be.  They didn't tell us that life would go on.  That Jackson would be the best thing that has ever happened to us.      

   I leave you with this: Everyone wants the perfect baby.  What is perfect?  Perfect is your own definition.

 


<3
Crystal


  

9th month, 2/11 - 3/11

   Ahhhh... Another month has come and gone... Noooooo!  How can Jackson possibly be nine-months-old??  Did I fall asleep on the remote while pressing the fast forward button?  It's been another month full of reaching milestones, learning new things, and growing.  It is amazing how fast babies learn new things.  I love watching Jackson learn, practice, and succeed at all of the milestones.  How is Jackson big enough that he can now sit in the grocery cart?

 

   Jackson can officially sit unassisted!!  Yay!  After physical therapy working so hard with him and us pushing him, he finally got it!  He gets so excited when he first sits up and is so proud of himself.  He still has his moments of tipping over, but they are few and far between now.  I'm still working with him when he reaches to get a toy.

 

   Along with being able to sit unassisted, Jackson has figured out how to push himself up to sitting all by himself!!! It's interesting to watch his process. He gets himself in a side sitting position, "walks" his hands to his front and then pushes up. Every time that he gets himself to the sitting position he gets a huge smile on his face and lets out this sweet little giggle.

Pushing up to sit up  

   Jackson has been working on pushing himself up to a side sit in physical therapy. Guess what I caught him doing one day while he was suppose to me napping.  My original goal was to have him in his crib at New Year's, but because his room was always so cold, we held off.  Since I caught him trying to sit up in his bassinet, there was no going back, he had to go in his crib.  He struggled a little bit at first, but did great his first night.  It's so strange to not have him right next to me anymore, but it's also nice to not have to tip toe around in my own room.  My only complaint would be that when he used to wake up in the middle of the night I could just roll over and rub his tummy until he fell back asleep.  Now, I have to walk all the way across the house to his room.  Oh well!

 

   At Jackson's reevaluation for TEIS, I asked if he could start to receive more physical therapy.  I had to justify why I wanted him to have more, and with my justification he was granted more physical therapy!  We are so excited that he now has therapy twice per week.  We also recently found out that Jackson's PT is putting in the paperwork to get Jackson a stander!  The stander will help Jackson with bearing weight and get him ready to hopefully walk.  It is so exciting!        

   We didn't really celebrate Valentine's Day other than Matt and I wishing each other a happy Valentine's Day.  I bought Jackson a cute outfit from Target that said "Future Heartbreaker," but he decided to go through a growth spurt right before Valentine's Day, so I returned it and got him a different outfit that not only worked for Valentine's, but he'll be able to wear it again - win, win!

"Hey girl, hey!"

   Let's talk separation anxiety - holy moly is it difficult!  I can't get out of his sight for more than a few seconds, if that.  There are some days that he will start getting upset the second that it appears that I may be leaving the room.  Because of the separation anxiety, I've been wearing him more around the house and he's had more highchair time while I'm in the kitchen.  It's a good thing he's cute!  I can't believe how beautiful his eyes are.  I get lost in them everyday.

   I've been asked by several people about Jackson's braces (AFO's).  The main question is "When will he not have to wear them?"  Jackson will more than likely always have to wear some type of brace on his feet/legs for him to be able to walk.  Without the braces, Jackson would be very unsteady and could possible cause damage to his ankles and/or feet by "rolling" them or not standing on them correctly.  With the braces, they will force his ankles and feet to be aligned in the correct position for him to bear weight.  They will help prevent damage to his ankles or feet.  What we don't know is the type of braces he will need.  We won't know that until the time comes for him to start bearing weight.

   We had spina bifida clinic on February 22nd.  We didn't have any major concerns or questions, so we felt more prepared this time than the last two clinics.  First thing that had to be done was the renal ultrasound to check Jackson's kidneys and bladder and the MRI of his head to check his ventricles and Chiari malformation.  He always does great during the ultrasounds, so it was pretty easy and fairly quick.  I absolutely hate the MRI! Two minutes have never felt so long in my life.  It's so hard to watch your child scream and cry and there's absolutely nothing you can do other than rub their arm/belly in hopes to calm them down some.

   The first doctor in was Jackson's neurosurgeon that worked on his spine during the big surgery last April.  Matt and I keep a pretty good eye on Jackson's noggin' with regard to his soft spot and know the signs of hydro, so we weren't expecting any news from the neurosurgeon other than that Jackson's ventricles looked fine.  According to the doctor, he didn't see an increase in size of Jackson's ventricles.  He said the only difference in the current scan from the previous one would be possibly a slight rounding, but nothing that could have been measured.  Yay! He checked out Jackson's scar and everything with it looked fine.

   Physical therapy and occupational therapy were extremely pleased with Jackson's development.  With the exception of bearing weight, Jackson has met every milestone on time or close to on time!  Jackson still has a slight tilt when he's sitting up... There is a muscle on the left side of his neck that no matter how many times it is stretched, it doesn't want to loosen up.  We were given some suggestions to try and get that muscle loose which included using an exercise ball to stretch the entire left side of his body.  We were also given some suggestions to add to his physical therapy workout to try to push him more.  I decided to go ahead and make Jackson some sensory bags to play with while sitting in his highchair.  So far, he really likes them.  My plan is to make him a sensory board... Eventually!  :)

 
     

   Urology checked the ultrasound of his kidneys and bladder and were very happy with both.  The doctor explained that both kidneys and his bladder look great and she is very pleased.  We will have another urodynamic test done in a few months to make sure that he is voiding completely, but so far, it appears that he is.  

   Nutrition asked us about how Jackson was doing with solids, what kind he had tried, if he has had any reactions, and how much milk he was still getting in a day.  According to his chart, he is well proportioned as far as weight and height go.  He is gaining weight at a great rate and she didn't have any concerns.  So far Jackson hasn't really liked pears, peaches, or butternut squash.  I love that he is enjoying so many solids.  He did have a slight reaction to apples so I'll test them again at a later date.  I have introduced him to eggs and we are working on grabbing them with just his pointer finger and thumb.  Right now he is grabbing with is entire fist and then can't really get it into his mouth.  It's going to take some more practice, but I know that he'll get it soon.

   Since we're on the topic of nutrition, this month we have trialed strawberries and spinach.  I bought some frozen strawberries and spinach, pureed them and then froze them in 1oz cubes.  Jackson wasn't sure about either one at first...  The strawberries were pretty tart, but he decided that he really liked them.  He likes them so much that he gets upset when they are all gone.  Spinach on the other hand, he doesn't seem to be a big fan...yet.  I'm hoping that with continuing to get him to try it, he will eventually be ok with it.  Time will tell...

     

   The doctors from orthopedics were the last that we saw and we did have a question/concern for them.  Jackson's legs turn inward.  We notice it more when he doesn't have his AFO's.  The doctor explained that he has tibial torsion.  Tibial torsion is an inward twisting of the shin bones. Tibial torsion causes the feet to turn inward, or have what is also known as a "pigeon-toed" appearance.  He went on to explain that in most cases the tibial torsion fixes itself once the child starts to bear weight. If Jackson's does not after he starts bearing weight and walking, we may be looking at a surgery to correct it.  However, that is down the road and we aren't going to worry about it right now.  We are going to keep an eye on it and try to work on it during PT.

   I've posted a few times about the fur babies and have always said that Chevelle wanted nothing to do with Jackson. Well, take a guess who has finally come around and is actually letting Jackson pet him! Yay! We have already started the "be sweet" because Jackson tries to pull the cat close and we all know that cats can be real jerks.  Aubie would rather watch from a distance...while knocking over a basket of his CLEAN clothes and making it her newest hiding spot! :) 

   Jackson has some chunky legs. So chunky in fact that he ends up with a fat roll on top of his braces.  Imagine a muffin top, but with legs.  We got Jackson's AFO's in November and he's been steadily gaining weight which means that he legs are getting more chunky. Matt and I have been recently talking about when Jackson would need a new pair of braces. I was given a list of signs to look for and so far haven't really seen any of them. 

   One day before PT got to the house, I took Jackson's braces off to let his feet air out.  I noticed that Jackson's right lower leg and foot were turning purple while he was sitting up. I showed the PT and she immediately started doing several tests to see if his hip was possibly dislocated. From all that she did, she didn't think that was the case. However, she had no idea what was going on or what would be causing his lower leg and foot to turn purple while sitting up.  When she laid him back down, his leg would go back to normal color with just a little redness.  I made an appointment with orthopedics to have Jackson checked out.  He was sent for an x-ray and thankfully everything turned out to be fine as far as bones go.  As of right now we still don't have an answer as to what is going on, but I will be bringing it up at Jackson's 9 month appointment on 3/16.  With the guidance of the PT, I am doing more time out of the braces and keeping Jackson on a time limit of how long he can sit up.  I am also massaging his leg to get the blood flowing again.  I posted this picture to the spina bifida groups and was immediately relieved to be told that it is very common.  Good to hear, but still very frustrating.  

   Jackson has had the signs of teething for several months.  In fact, it's gotten to the point where I was starting to question whether or not I knew the signs of teething or if I was just making it up.  However, he has become more of a drool monster, chewing on EVERYTHING, and quite the stinker attitude wise.  So, I feel pretty confident that he should be getting a tooth or teeth soon.  I tried to put baby Orajel on his gums, but he wanted nothing to do with it.  I ended up just giving him a breastmilk pop and he was happy... Well, until it melted, then he had a meltdown.   

   I really do try to be organized, but it is hard and I admit that I'm a stacker.  However, I did organize Jackson's toys into two bins, soft toys and hard toys.  When Jackson is on the floor playing, I tip both bins over and he's to the point of reaching in and pulling out what he wants to play with. Now, if only he would learn to put them back. 

   Well, I guess that's it!  I look forward to the next month and watching Jackson grown and learn more and more.  

Crystal