12th month, 5/11 - 6/11

   HAPPY 1st BIRTHDAY JACKSON!!!   

   It's been a year - 365 days, 12 very, very short months since Jackson made his entrance into the world.  There have been countless diapers, many sleepless nights, miles worth of smiles, a lot of tears of happiness and tears of fear and the unknown, and so much more.  Jackson's first year was amazing, but I would be lying if I said that it was easy, it definitely was not.  However, it was worth it and I can't wait to see what the next year brings.  

 

   Since the 11th fell on a Saturday, we were able to celebrate his birthday on the actual day.  Being crafty, I started making the decorations for the party about two months prior and was so excited about the party.  Since Jackson had shown interest in Mickey Mouse pretty early on, I decided that the party theme would be Mickey Mouse Clubhouse.  Pinterest is a great thing to find ideas for anything and everything, but it definitely is amazing for finding ideas for birthday parties.

   

   Jackson LOVED his cake!  He did such a great job with everyone around, but was so tired due to not taking his nap.  I felt like a crazy lady as soon as I woke up the morning of his birthday and until the last person left.  Once everyone left, I realized that I didn't take any pictures, and I started kicking myself.  So, if you're reading this and took pictures, send them my way, please! 

   Along with his birthday, Jackson also had his latest clinic at the end of May.  As with all of his other clinics, he had to get an ultrasound done to check his kidneys and bladder and a MRI of his brain to check his ventricles.  Matt went with Jackson for the ultrasound and said that he did great.  I went with him during the MRI and it was so hard, as usual.  I don't think I'll ever be alright with seeing Jackson strapped down and crying.  

   The neurosurgeon told us that Jackson's ventricles haven't increased since his last clinic, yay!  He mentioned that we aren't still out of the woods for Jackson possibly needing an ETV, but made it sound like we are in the clear for him needing a shunt, double yay!  He didn't have any concerns and told us that Jackson will need to have a sedated MRI for his next clinic in August.  I knew that he would need a sedated MRI at some point, but I didn't think it would be so soon.  The reason why he will have to be sedated is so that they can do a full blown MRI and not just a quick one.  The neurosurgeon wants to get an in depth look at Jackson's brain.  So, instead of a quick 10 minutes, Jackson will be in the MRI machine for 45 minutes, if not longer.

   Physical therapy and occupational therapy were very impressed with what all Jackson is doing, working on, and has accomplished.  They are very proud and stated that they feel he will do great since he's always doing so well now.  I told them that we have started the process of getting Jackson his stander and they were really glad to hear that.  I have my moments of getting sad that Jackson isn't crawling and/or walking yet, especially when I see pictures/videos of other kiddos doing so.  PT/OT help bring me back to reality and remind me that technically Jackson is 2 months behind, plus he has a condition in which he's going to have to work harder to reach those milestones.

   Ortho looked at Jackson's feet and back and didn't express any concerns.  We talked about Jackson's AFO's and he agreed that it was time for him to get new ones, so he wrote us a new prescription. TEIS (TN Early Intervention) will pay for the new AFO's, but there is a process that we have to go through for that to happen.  Because of the process, we're in standstill waiting for whatever needs to be done on their end, orthos end, and PT's end.  Once everything is good to go, I'll take him to get fitted for his new AFO's.  The company that we will be going through supposedly doesn't take as long as the first one, so hopefully it will be a quick process once rolling.    

   We are still working on standing, kneeling, and crawling.  Jackson has gotten really good at army crawling and is starting to get up on to his knees.  However, once he starts trying to crawl, he flattens himself out and proceeds to use his arms and drag himself.  Jackson's PT thinks it's only a matter of time for him to figure out how much easier crawling is by using his knees.  He is quite fast when he's trying to be sneaky, but he's not very quiet about it.  Every time that he tries to sneak around the corner of the couch, he crawls, stops to look at me, laughs, crawls again, and the process starts over.  :)  We haven't heard anything about his stander, but we should soon.  The last thing I found out about it was that his pediatrician signed off on it, so it should be in the hands of the insurance company.

   Jackson officially says "mama" and "dada."  It melts my heart every time that he says "mama" and "dada."  Who knew that something so small would melt you into a puddle. We are still working on sign language and he has started signing "milk."  I'm still focusing on signs that deal mainly with eating, but I've also started teaching him the sign for "change" and "I love you."

   Jackson is such a great eater!  There is very little that he doesn't like and that makes me happy.  I'm so glad that he isn't picky.  However, he does go in spurts.  One day he may eat his weight in watermelon and then the next decide that he doesn't want any.  I've introduced a spoon and fork to Jackson, but he doesn't have any interest in using them yet.

 

   Jackson finally cut a tooth!  He has done everything else so far on his own terms and cutting teeth is exactly the same.  So far he isn't following the typical pattern of which his teeth should come in since the first tooth he cut is his upper left "vampire" tooth.  That thing is sharp!  Poor thing has been running a fever, runny nose, super fussy, and just outright doesn't feel well.  I have a feeling that he's going to be one that cuts a whole bunch of teeth at one time.

   We have reached toddler meltdowns when he doesn't get what he wants or something doesn't go like he wants it to.  For example, at Walmart while visiting my parents, my dad picked up a small ball for him to play with.  We wanted to wipe it down before he played with it, but he threw a huge fit!  He didn't get the ball until it was wiped down in the car.  He accidentally dropped it in the car and threw another fit until I got it for him.  Oh boy!  

   Jackson truly has the best personality!  He is so funny, such a flirt, and the biggest ham when it comes to pictures.  He laughs all the time and it's very much contagious.  I already know that I'm going to have my hands full when it comes time for him to start school.  I fully accept that I'm going to be getting letters from his teachers about him being clown.

 
   Jackson got to go swimming for the first time!  I wasn't sure if he would like it or if he would be afraid.  He loves playing in the tub, so I was really hoping that he would have a blast and he DID!  He LOVES the water and loves playing in his pool.  I'm planning on getting him into a swim class soon. There is a company close to us that offers classes for little ones with special needs, so I think that's the one that I'm going to try and get him in at first.  He got an awesome pool for his birthday that is much bigger than the one pictured and  I can't wait to get it set up and invite all his "girlfriends" over for a playdate!

 

   I think both fur babies have decided that Jackson isn't so bad and actually like him.  They are always around Jackson, sniffing him, letting him pet them, laying with him, etc.  They love when he shares his food, especially the kind that they can bat around on the floor.

   After Jackson's birthday, we went on a vacation and spent some time with my parents at their lake house.  It was the first time that Jackson was on a boat and he even got to ride on my dad's tractor.  Dad found a lizard and showed it to Jackson, he was very intrigued by it. :)

 

   Since he liked his pool so much, I was excited to see how he did in the lake.  He seemed to really like it, but struggled with the sun in his eyes.  He was a true boat baby and fell asleep while riding around on the lake.  Since it was so hot, we only got to go out on the lake one day during our visit, but he got to play in his pool several times.  

 

   I knew that I wanted to make something for Matt for Father's Day and decided on doing a picture for him.  I think it came out great and I can't wait to get the pictures printed out, framed, and hung up.

     Well, I guess that's it.  I apologize for posting this so late, but we've been pretty busy.  :)

Crystal

11th month, 4/11 - 5/11

   We are one month away from Jackson turning 1!  How in the world could that be?  Where has my itty bitty baby gone?  Well, he's turned into a chunky, playful, full of love little boy.  I love watching him grow and learn new things.  However, at the same time, it's breaking my momma heart that he is growing so quickly.  Time slow down, please, slow down.  The song "Let Them Be Little" means so much more these days than when it first came out.  

   Let's talk baby led weaning.  BLW, simply put, is when you offer "table" foods instead of purees. We've done purees since Jackson was 6 months old, so I decided to start offering him more "table" food.  I started pretty simply with eggs, but have since ventured out.  He's had toast, hot dogs, carrot pieces, and mandarin oranges just to name a few things.  My biggest fear is Jackson choking on his food, so I always cut things into smaller pieces with the exception of the toast.  He's become really good at picking the food up and getting it to his mouth.  He's also figured out that if he doesn't like/want something, he can just drop it into his lap.  His new favorite game is dropping things onto the floor.  Whether it be food, his cup, or toys, he drops them, looks at them, and then looks at me.  We've reached that point of "stop dropping ______" and "all gone" when he's dropped something three times.

 

   Anyone like me and have a lot of puree food?  Jackson has decided that he likes whole food more than the purees now and I was adamant that I was going to use the purees that I have.  I decided to use the purees in the frozen pop tray, the same one that I use for the breastmilk pops, and he loves them!  It's a win - win.  I get to use the puree foods and not waste them and Jackson gets something frozen to help his gums.  

   Jackson is just like the cats, he likes to "help" when his help isn't needed.  While making his fabric banner for his high chair, he decided that he wanted to help me by pulling on it, putting it in his mouth, and rolling off with it.

 

   My mother-in-law and I took Jackson to the park.  It was the first time that he was in a swing.  He loved it!  He giggled and smiled the entire time that I was pushing him.  Granted, he stopped smiling the second that I tried to take a picture. :)

   We have a belly scooter!  We have a belly scooter!  We have a belly scooter!  Can you tell how excited I am?  I'm pretty positive that our neighbors heard me cheering.  Now that he can scoot himself around, nothing is safe!  He is already getting into pretty much everything at his level.

       Courtney, Jackson's PT has been working on him crawling, but she has also been trying to strengthen his legs in hopes of him standing.  One day, she decided to see what he would do if she put him sitting on his knees.  He did great!  Not only did he sit on his knees, but she cued him (tapped his leg) to stand and he did it!  He wasn't able to stand very long, but he is getting better and is gaining more endurance.


 

   Can a child have too many toys?  I don't think so... Well, maybe!  Jackson has soooo many toys!  In my defense, a lot of his toys are educational AND majority came from various consignment sales. Plus, he's very spoiled by all of his grandparents. :)

   Now, while he has sooooo many toys, what's his most favorite thing?  Coat hangers of course!

   Just like Jackson, the cats like to play with things that aren't toys.  Aubie has a love for Jackson's braces.  Anytime that they are off and within her sights, she always rubs all over them, lays on them, and licks them.  It's so strange!

   I have to brag a moment and tell you how smart and good at problem solving Jackson is so far.  He loves to knock over towers.  Doesn't matter what the tower is made of, he wants to knock it over and will wait for me to build it again.  If I build a tower using his stacking cups, the bottom one has a handle on it.  If the tower is just out of his reach, he will grab a hold of the handle and pull it to him, then he will knock it down!  So smart and yet, so lazy! :)

   I know that some of you have heard or possibly seen something on Facebook concerning Jackson being ill this month.  We had an interesting week trying to figure out what was going on with our kiddo.  We didn't tell many people what was going on because we didn't have very many answers.  We still don't have many answers, but I want to fill everyone in on what happened.  On Saturday, 4/30, Jackson started refusing to eat and/or drink.  While we were concerned, he was still acting like himself for the most part.  He had been really fussy for a few days and we just assumed that both things had something to do with him teething.

   On Sunday, Jackson woke up acting like himself, playing and laughing.  Matt took him to change his diaper and noticed that Jackson was constipated.  Constipation isn't really anything new to us, it goes along with his spina bifida.  However, what was new was how hard he was struggling to go to the bathroom.  While Matt was changing his diaper, Jackson all of sudden went limp - eyes closed, not moving, not reacting to any kind of stimuli. Aside from breathing normally, he was out cold!  We called the pediatrician and were waiting for a callback.  Shortly after calling, we decided that it was taking too long and we got him loaded into the truck and Matt got us to the Stonecrest ER quite swiftly.  It's only a few minutes down the road and an ambulance would have come from there anyway, so this was the fastest option.

  Naturally, when we arrived at the hospital he was awake and looking around.  They took him in to the triage room and he passed out again within minutes,  His temperature was reading 90 and the nurse kept thinking that it had to have been a mistake.  She tried several different thermometers and they were all reading around the same temp.  His glucose level was also very low at 37.  We were taken back to a room and the nurses got an IV going, after three tries.  He was so out of it that he didn't even come to when they were doing the IV.  We explained everything there is to know about Jackson to the doctor that was assigned to him.  He went ahead and called Vanderbilt to get their advice/orders and arrange for transport to Nashville.  Other than what was already being done, they wanted him on antibiotics as no one knew what we were dealing with.  We were then moved to a critical care room and he was put under a lot of blankets and the heated blanket that resembles an inflated pool raft.  Blood was drawn to be tested for an infection and he got a CT scan and chest x-ray.

  Vanderbilt sent one of their four Neonatal Pediatric Transport ambulances to pick us up.  These are the largest ambulances you'll likely ever see and are basically a rolling ICU for children.  They carry a crew of three to four and seat five up front.  When they arrived at Stonecrest they had the attention of the entire Emergency Room and everyone seemed to want to help.  They got Jackson all setup and ready to roll and we had a few questions to answer before they could leave.  I was able to ride with Jackson, in the front of the ambulance, and Matt followed in his truck.  Even though I wasn't able to ride with Jackson in the back, the ambulance was set up so that I could see him through a video feed.  I couldn't hear what was going on, but there were a couple of times that I saw the paramedics laugh.  I remember praying that they were laughing because Jackson was being Jackson and being a flirt.

 

   
   When we arrived at Vanderbilt, they got him set up in a room in the ER and the doctor came in shortly after we arrived.  At this point, he had been awake since the CT scan at Stonecrest.  We learned that his temperature had come back up, just a little bit, and his blood sugar was an obvious priority. We were told that Jackson's glucose level should have been somewhere between 70 and 100, with 60 being low, but acceptable.  It was scary to realize that his blood sugar was almost half of what it should have been.  He was started on dextrose to get his blood sugar back up and fluids to get him hydrated.

 
  With the fluids, dextrose, and warming blankets, he quickly got his temperature and blood sugar back to normal.  He was starting to come around more, still not acting like himself, but he still would fade in and out every once in awhile.  At one point a nurse was in his room and watched Jackson go from consciousness to unconsciousness.  While scary, it was nice for someone in the medical field to see what we had been trying to describe.  By the time he paged for the doctors to come in the room, Jackson was awake again.


   We were admitted to the PICU on Sunday afternoon for further observation and an EEG to rule out/confirm seizures.  He slept for most of the rest of Sunday and well in to Monday.  The EEG showed no signs of seizures or anything abnormal going on with his brain, which was wonderful news.  The bloodwork that was taken on Sunday wasn't showing any sign of infection yet, but we were told that all of the results wouldn't be ready until 48 hours from the draw time.  I have no idea what the test was called that they did in the PICU, but they put a flexible q-tip up his nose and sent it off to check for any viral infections.  

   
   On Monday afternoon, we were told that Jackson no longer qualified as PICU status so we would be moved to a normal room.  Great news, but we still didn't have any answers.  When we got to the new room, his door still had all the precaution signs on it so the nurses and doctors still had to wear gowns and masks to come in the room since they didn't know what was going on.  Also, since they weren't positive what was going on and whether or not it was something viral.

   On Tuesday, Jackson was almost back to his normal, happy Jackson self.  He wasn't 100%, but he was so much better than when we arrived on Sunday.  By Tuesday afternoon, the precaution signs came off of the door and the doctors and nurses didn't have to come in with gowns and masks on.  The IV that he got at the emergency room was going bad, so they removed it.  The IV lady came and decided the best place to put the new one was in his head since his arms and legs are so chunky.  I wasn't able to stay in the room for that procedure.  Once he started crying and screaming, my heart broke into a million pieces.  The first attempt didn't work as well as she wanted, so she had to do it again.  This was, by far, the most upset Jackson had ever been.  Matt stayed with him to hold his hands and tried to keep him calm while they were working on his new IV.  He's seen a lot of things over the years that I don't even like to hear about, so he isn't phased by medical situations or disturbing scenes that would make most people seriously consider skipping their next meal.  I guess it's helpful to be able to emotionally disconnect when things have to be done - especially if that means helping out when your infant son is going through the most agonizing thing he's ever been through.

   Vanderbilt is pretty well known for famous and non-famous people coming to visit the kiddos.  I was waiting for a race car driver, a TV star, a singer, etc. to walk through the door.  We didn't get to see anyone famous, but these amazing singers from Musicians on Call came and sang Jackson "Fishin' in the Dark."  The three ladies did an amazing job and commented on how Jackson smiling while they were singing made it hard to sing and smile so much at the same time.  On May 4th, you know, May the 4th be with you, Darth Vader, R2-D2, and some Storm Troopers were at the hospital.  Darth Vader was on our floor, the next room down, but I decided not to let him in our room for fear of him frightening Jackson.

   On Wednesday, we meet with the Infectious Disease doctor.  Since all of Jackson's tests kept coming back negative, the fear was that he might have had meningitis.  The only way to test for meningitis is a spinal tap.  Due to Jackson's spina bifida and the anatomy of his spine, a spinal tap was completely out of the question.  After speaking with the Infectious Disease doctor and answering his questions, he explained that he didn't feel that Jackson had meningitis.  He only showed a few possible signs of the infection and was missing the main signs that they look for.  Great news!  However, so thankful that they didn't feel that he had meningitis, we were back at square one, no answer as to what caused his temperature and blood sugar to drop like they did.

   By Wednesday afternoon, Jackson was feeling better and we decided to take him down to the playroom.  The playroom was decked out with all of kinds of toys, books, and a fish tank.  They have a toy library where you can borrow a toy and take it back to your room for your kiddo to play with.  They have three playrooms and each one is set up for different age ranges.  The floor that Jackson's room was on had the teen room.  It had a pool table and older kid stuff.  It's so nice that the hospital has these places for the kiddos to go and get out of their room and meet new people.

 

   Being on antibiotics for so long tore Jackson's belly and little booty up.  He had such bad diarrhea that we were changing his diaper every 15 or so minutes.  He would scream at the top of lungs every time that he went to the bathroom.  We tried several different things to help protect his booty from the damage all of this was causing, but nothing worked.  This was due to none of it having enough time to actually stick and create a barrier before he went to the bathroom again.  It was completely heartbreaking and there was nothing that we could do to help.  Thankfully, since the Infectious Disease doctor felt fairly positive that he didn't have meningitis, he ordered for the antibiotics to be stopped.

   By Friday morning, Jackson was back to his normal self.  He was "talking," flirting with his nurse, smiling and laughing, and blowing mouth farts.  After Matt again helping him through the agony of the nurse removing the tape, glue, and IV from the side of his head, Jackson was discharged!  While we were so glad to be going home, we still didn't have any definite answers as to what caused this entire thing.  After 6 days and 5 nights of being at the hospital, our schedule was completely screwed up.  It took several days for him to sleep through the night again.  We are still working on getting him to go to bed at his original bedtime and not after 10.  Any tricks?  Please!
                 

   We met with Numotion to get Jackson measured for his stander.  We are so excited to get the stander and can't wait to watch Jackson become more independent.  The stander that he will be getting is awesome.  With the stander’s removable large wheels in place, Jackson can self-propel in a standing position – free to explore his surroundings.  If we remove the large wheels, the stander easily rolls right up to a table or a counter enabling him to participate in crafts and other stationary activities.  With regular use, the stander will provide a way for Jackson to strengthen motor skills and work toward independent standing.  The picture that I've included is a stock photo, but it's the stander that Jackson will get, minus a few of the things that he won't need.  The stander has a conversion kit, so as he grows, should he still need it, the stander will still be useful.

   I'm part of several groups on Facebook that deal with spina bifida.  I even created a group for Middle Tennessee.  I've become very passionate about spina bifida and want to learn all that I can, educate whoever I can, and meet new people.  I want Jackson to grow up knowing that he isn't alone.  I want him to see other people with spina bifida succeed at whatever is put in front of them.  Through my group and the education lady that comes out once a month, I was able to meet with three other moms and their sweet little ones.  One little girl is just a month older than Jackson, the little boy is a couple months younger than him, and the youngest, a little girl, is several months younger than him.  It was a great to meet them and talk not only about spina bifida, but general parenting issues.  We are planning on meeting again soon and I can't wait!

   Jackson LOVES to look at books!  I read to him nightly and sometimes several times throughout the day.  I'm so glad that he is already showing love for books - makes my teacher heart and mommy heart happy!

 

   Well, I think that's about all for the month.  It was a boring month, until Jackson gave us his scare.  I can't believe I'm going to have a 1 year old in less than a month!  Currently, my almost 1 year old is playing with the magazines that he found.  Have I mentioned that nothing is safe now?  :)

<3,
Crystal