Chuggington Party - Joseph Turns 3!

Our oldest son, Joseph, turned three on December 31st.  Due to the croup...we had to push his party to January 5th.  He requested, in his words, a "Koko cake, Wilson cake, Brewster cake...Chuggington Chuggineer party!"  So, we gave him just that!

Let's start with the birthday banner.  Thanks to Rain on a Tin Roof for the awesome idea!  The blog has a template you can print and everything!  I did the banner in black and yellow cardstock, Chuggineer colors, and in red, blue, and yellow, which are Chug Patrol colors.  I think it turned out so cute!  I will make one for Jonathan too when he is one!

With decorations, I did Chug Patrol and Chuggineer colors.  The table covers were also in those colors.  

For the tables, I gave the drinks and all the separate snack items their own cute Chuggington themed names.

Mtambo's Safrai Animal Cookies and Hoot and Toot's Chugtatstic Sugar Cookies

Old Puffer Pete's Old Timey Pretzels and Koko's Chugga Chugga Choo Choo Chips and Dip

Wilson and the Chug Patrol's Thirst Rescuing Soda

Now, for the cake!  I think it covered everything he wanted, Brewster (on top because he is Joseph's favorite), Koko, and Wilson.  Koko, who is now a passenger train, is heading towards the tunnel opening on the top tier.  Chug Patrol Wilson is closing a track, note the sign behind Chug Patrol 1.  Chugineer Brewster...he is just looking good!  It was made by myself.  The ribbon I painted to look like Brewster's Chugineer stripes.  It was a white cake with chocolate buttercream.

Overall, I think he had a traintastic Chuggington party!

33 Weeks!

I just wanted to give everyone an update on Mr. Jonathan.  He is now 33 weeks!  He is still measuring 10 days a head of schedule.  At the moment, I am feeling pretty huge.  Last weekend, we had maternity pictures taken.  This is just one of our previews:

33 Weeks!  - Taken by:  Elizabeth Norman Photography

We had an ultrasound around 30 weeks (a few days shy) and I have fantastic news!  We went from borderline severe ventriculomegaly to mild!!  His right is 11.8 mm and his left is measuring 10.8 mm.  I am on cloud nine with the change.  I pray that it will continue to go down to normal.  We have another ultrasound at 37 weeks.  I will update again then.

Joseph is doing great.  We are trying to get him ready from brother as best as we can.  We have a few big brother books that he loves to read.  He is also talking to the baby and kissing my stomach.  He will put his hand on my belly and go "Move baby, move!"  Too cute.  He did tell his brother he loved him the other night, and my heart melted.  I just hope we have a smooth transition.  He loves babies, but this baby won't leave after an hour. ;)  His next neurologist appointment is May 6th. 

Joseph's 2nd MRI

We had another MRI performed when I was seven weeks pregnant.  We had the MRI due to the seizures.  The doctor wanted to make sure everything was ok in his brain and there was nothing abnormal in the brain causing them.  The MRI was stable, meaning nothing had changed since our last ultrasound.  However, we got a conflicting reading.  Both MRIs stated that Joseph had ventriculomegaly (a "moderate" case).  One said because of external hydrocephalus and the other because of white matter loss.  What did that mean?!  The doctor got a second opinion on the readings to make it clear what route we take with Joseph.  Well, at our last visit (January 2013), we were told that a team of radiologists got together and reviewed his case and determined that he has ventriculomegaly due to white matter loss.  That was shocking and hard to hear.  I thought of Jonathan and the fact he already has ventriculomegaly.  Two boys with ventriculomegaly.  There has to be something hereditary going on here, but all of Joseph's tests were normal and he has perfect DNA. Sometimes, I guess we never get the answers we look for.

I did ask our doctor about BESS.  Did he still have it?  Her answer was that it was different now, but how we were treating him would be no different.  She told us to monitor him for delays and setbacks.

Joseph's first snow!!  (2/16/2013)

Even with his new diagnosis, Joseph is doing great.  His speech is picking up and he is saying a lot more.  He is putting words into sentences now.  Joseph is running! :)  He loves to play "green light, red light."  Steps are really still an issue, but it is better than it was.  I will say that.  He knows most of his letters and colors, and he is starting to show interest in numbers.  He likes to count like this..."one, two, six...."  Too cute.  I love him to pieces.

2 weeks from today I'll have a follow up on Jonathan!  We have another ultrasound and I can't wait to see him!

Meet Jonathan!

Meet Jonathan!  Our sweet little man is due May 17th!  It seems like forever away some days and just right around the corner the next day.

This picture is from last week.  He was 26 weeks, but measuring 10 days ahead.  He has been measuring 10 days ahead for a while now.  My guess is that he will be hear a few days early.

We found our we were pregnant days before I was due to have my period.  It was the perfect timing because we told all my family together.  We had already had a family vacation arranged for that weekend.  We are super excited to meet him and can't wait for Joseph to become a big brother.  He loves his little brother.  He loves to lay on my belly and to kiss it.  He has felt him kick and move and will smile when he does.  He first felt him move when he was laying his head on my tummy and he got a good kick in the cheek.  Luckily, he just looked at me stunned.

We found out he was a boy at 18 weeks.  We were soooo sure he was a girl.  We did all the at home test.  You know, where you pee on the baking soda and the red cabbage.  The Chinese gender predictor calender...everything said he was going to be a girl.

We were sent to a local college to get a level 2 ultrasound, due to Joseph's medical history.  The first thing they looked at was the head.  The tech goes "hmmmm."  I looked at her and told her "that doesn't sound like a good hmmm."  His ventricles were on the upper end of "normal."  knew right away it was a boy.  Boys are more likely to have external hydrocephalus.  I was worried about that.  I cried.  Not because he was a boy...but because of worry for him.

Anyway, I was told I needed to be monitored with more ultrasounds and they planned to do another at 25 weeks and one closer to his due date.

Last week, I had my most current ultrasound.  Well, his lateral ventricles jumped from 9 mm to 11.1 mm (left) and 14.2 mm (right).  So...now we are less than a millimeter from being considered hydrocephalus.  My husband is the best and is really my rock (beside God).  He is so optimistic that things will be fine.  I guess it is a woman's thing to worry about everything...especially things out of our control.  What does this all mean for Jonathan now?  Well...I am now getting ultrasounds at every visit until they say otherwise.  Just to monitor him and to make sure it doesn't get worse.  I will keep you posted.

Joseph's Seizures

Just about a week and a half after we found out we were pregnant with Jonathan (September of 2012), Kevin left for about half a week to go to Arizona.  The day he came home, I woke up Joseph from a nap so he could see his daddy.  I knew he would be so excited.  I picked him up and kissed him on the forehead.  We walked into the hallway and he just started shaking.  I looked at him right away and called his name.  He wasn't responding, but was looking around like he had no clue where he was.  I walked up to Kevin and he was still shaking strangely.  He wouldn't look at me, even when I gave him to Kevin.  Then, about 30 seconds later, he was like "Daddy!"  He was shaky for about an hour afterwards, but okay.

Before being a mommy, I was an exceptional children's teacher.  I saw seizures every single day.  I feared the worse.

During that week, he would wake up screaming.  When I would go to him, he was just shaking all over.  One morning, I called Kevin into the room and he saw that he was still shaking.  We agreed it was time to call the doctor.  Our pediatric doctor sent him right to the neurologist.  We were fitted for an EEG (Electroencephalography).  He didn't sleep at all that night with it on his head.  It was a 24 hour test, and the results were negative.  However, we requested another test.  This one would take the entire weekend (it was a Friday).  He slept much better and sure enough...we learned he was having seizures throughout the night.  He was having complex partial and generalized seizures several times a night.  His seizures are in his frontal lobe in the right hemisphere.  They were very short, 10-20 seconds, but we were put on Keppra twice a day.  

The Keppra was an adjustment, to say the least.  It is an anti-seizure drug that the doctor recommended because it doesn't have as many side effects.  The most common side effect I read about in toddlers was "Keppra rage."  Joseph's temper did spike for a good month.  However, when he adjusted to the medicine, he went back to normal.  His temper is a little shorter than it was, but it is very manageable.  We gave the medicine a good try and we are so thankful it worked for us.

Joseph's seizures are very controlled on the Keppra.  He has only had one big seizure since September.  It was the night before he started running a fever with the croup.  I was feeding him dinner and he just turned his head to the side, drew his arms up to his chest (near his shoulders) and started shaking.  I tried to remain calm and reassure him that he was ok.  He wasn't responding to his name.  When he was out of the seizure, he started screaming like he was afraid or in pain.  I quickly took him in my arms and calmed him down.  He was shaky for about an hour.  We were unsure if the screaming was related to the seizures.  Now, we know they are.  I think it just terrifies him.

We are very blessed they are controlled.  I just pray that we can come off the medicine soon.  

Happy Birthday, Joseph!!

Joseph is TWO!  I can't believe how fast the year has been!  Happy Birthday, Sweetie!

Joseph's Early Struggles and BESS

Joseph was an easy newborn, for the most part.  He breastfed...so I was a very tired mommy early on.  In February of 2011 we welcomed our niece.  My twin sister, Traci, and I were six weeks a part during our pregnancies.  Of course, what does every new mom do?  Compare their child to others, right?  I am very guilty of that.  I think if I didn't do that, I wouldn't have seen any signs that anything was wrong.

I think the first thing I noticed was that Joseph wasn't baring weight when I would try to bounce him on my legs (something my niece was already doing).  Around this time, we also noticed his head size was getting rather large.  We had an ultrasound down of his head and everything looked fine.  We thought something was wrong with his legs.  So...we got an x-ray of his legs.  Things seemed fine still.

Joseph started being super slow on sitting up and crawling.  His speech was also delayed.  My doctor recommended CDSA services (Children's Developmental Service Agency) or early intervention services.  A team of specialists (a physical therapist, a speech therapist, an occupational therapists, and our case manager) came out and looked Joseph over.  They determined (along with our doctor) that he had hypotonia (low muscle tone).  We were recommended for physical therapy.

Around this time we were also recommended to see a neurologist to see why he was having tone issues.  The neurologist was concerned about BESS or BESSI Syndrome.  BESS stands for Benign Enlargement of the Subarachnoid Spaces or external hydrocephalus.  She said that he looked like a classic case (large head circumference, big forehead, and tone issues).  To confirmed, we did a MRI.  Sure enough, that is what the MRI report read.  I was so concerned and worried.  We learned it was genetic and that Kevin most likely had it as a child as well, it just wasn't caught.  My husband has a large head size and he had issues with gross motor skills.  I did research and really couldn't find anything out there.

I think the thing that worried me the most was that children with BESS are more likely to have brain bleeds from simple falls or just randomly because of tension on the blood vessels in the brain.  I felt like I had a porcelain doll for a son now.  By this time, he was enrolled in physical therapy and was starting to pull up on things at over a year old.  Every fall scared me to death.  As a former exceptional children's teacher, I know the signs of a seizure, which is something that signals a brain bleed.  I was always on guard and hovered probably way too much.  It really scared me, even though BESS is something that doesn't impact a child's cognitive functioning and it is something that they grow out of around age 3.  I think the aftermath of a brain bleed was what troubled me the most....

BESS can impact children differently.  For my son, it impacted his gross motor skills.  It caused him to have low muscle tone, which caused walking problems, speech problems, and even eating problems.  Why?  Even the muscles in his throat and face were delayed and weak.  He was/is super smart, but we had a lot of communication breakdowns because he couldn't TELL me what he wanted.  He choked so easily on food.  I remember struggling with him to hold a cup on his own, but his arms were too weak for a long time.  Drinking from a straw was a challenge too.  He didn't master that until about 18 months.  He learned to walk with a walker.  The walker made his legs stronger and he was finally able to walk on his own.

Early intervention helped us so much.  Joseph is fixing to turn two in just a few days.  I don't know where we would be without it.  Would he be walking by now?  Possibly.  I think he would have been walking later.  Joseph was really starting to turn a corner.  So, we decided we were ready to expand our family.  I didn't want to get pregnant again until he was doing much better on his own.  I wanted to be able to focus on his needs and wants before adding a sibling into his world.  We wanted them close together so they would be close and have lots in common, but Joseph had to be a little more independent and he was doing amazing!

Kevin and I went on vacation to Disney World...just us!  It was fantastic!  We knew we were going to start trying and sure enough, I got pregnant right away!  :)

Then, seizures started....