"I'm 4, not 3 anymore"

Jack is very happy that he is four.  Actually he is already talking about turning 5 next year.  He keeps talking about how he is getting all the way big.  And he is growing like a weed!  He hasn't gained any weight in the last 6 months, he's holding steady at 42 lbs, but he grew 2 inches in three months.  He is getting very tall and turning into quite the little boy. 

The last year has been filled with a lot of firsts.  His first sleep-over without us; His first out-of-country vacation; leaps and bounds in his language skills; and really forming friends and being aware of other people's feelings.  

He loves his cousins.  Really, those are the people he asks to be with most.  And his Papa and his best friend Ellie.  His social calendar would be filled every day if I let it :-)  

He was getting really tired by the end of the party, and then we had 26 people at our house for Easter dinner and a huge egg hunt.  We are still finding eggs in the yard :-)  Jack thinks it's great!  Me, well, a day like that at this stage of pregnancy was not the smartest idea.  

Jack can't wait to be a big brother.  He knew we were going to have his birthday, then daddy's birthday, then mommy's birthday, and then the baby will be joining us.  We are just stacking all of the birthdays on top of each other. 

I am so proud of him and how far he has come in the last year.  He is an amazing little boy and I am so lucky to be his mom! 

Purple Day, 2013

March 26th is known as purple day.  It was started by a young girl in Canada who has epilepsy.  She wanted to spread epilepsy awareness so one young girl started something for all of those who suffer from epilepsy.  You can read more about her story at www.purpleday.org

 Of course I wear purple for this amazing little dude!

 His strength and courage and ability to just deal with what life hands him is amazing.  He has taught me more in the last 4 years than in my previous 30 combine.

(Yes, my belly is getting huge.)

I also wear purple for our friends.  Friends who we probably wouldn't have met if we weren't on this journey, but friends who I treasure.

Epilepsy kills 50,000 a year.  Epilepsy is underfunded.  Bottom line, epilepsy sucks and we need a cure, better treatments, and for people to understand how wide spread it is.

This little guy, and all of his friends deserve a cure! 

My favorite things

I am just going to skip over the fact that it has been a few months since I've posted.  There is a lot going on, including a pregnancy that I am approaching the end of and the poor second child is already not getting the attention the first did.

However, I started this post a while back and want to finish it.

Jack is at such a fun age right now.  He is talking up a storm and his little personality is just adorable.  That being said, I wanted to write down some of my favorite things about this age, so that I don't forget them!

* When we go to ride the train he says, " one uh Mama, one uh Jack" when we get the tickets.

* He insists on helping us make coffee in the mornings.   He also likes to help make pancakes.  The other day I was making him some keto chocolates and though he couldn't help (because of the hot stove) he decided to help by doing the dishes.  He pulled over a stool to the sink and started washing away.  Of course I had to re-do them all, but it was sweet.

* He gives Baxter giant bear hugs and then a kiss.

* If I am leaving, he will blow kisses and say, "lots of kisses".

* He will do the sign for 'I love you' and say "I love you.  Hook em horns!".  He will also stick his little thumbs up and say "gege aggies".

* He is making up his own jokes now, which is frightening!  Like this:



* If he goes to the other room to get something, he will hold up his little finger and say, "I'll be right back" before he runs off.  I don't know where he got that, but it's adorable.

*He has starting bargaining.  He will ask for "two more minutes" or "one more strawberry", and it's really hard to tell him no.

* "I need a hair cut" is a common phrase that he says.  It always makes me sad when we cut his hair, because he looks so much older, but he likes it short.  *insert mama sniffing*

We have been working on potty training for months.  Months and months and months it seems like.  I have given up on pushing him and just decided that he will do it when he is ready to.  He wears undies at home some and so we do a lot of laundry.  We sit on the potty on a very regular basis, but that is about the extent of it.  He KNOWS what to do, he just hasn't made up his mind that he is going to do it.  He went in the potty at school at the very beginning of October and then had success the other day at home on Thursday, March 14th, so 5 months between.  So while he did actually ask to sit on the potty today, I'm not holding my breath.  I will just say that I am so not looking forward to have 2 children in diapers when one of them is going to be 4.

And yes, he turns 4 in two weeks.  I know that I say it every year, but I can't believe how big he is.  He talks about being a big brother but I tell him that he is still mama's baby!

I need to do a post about our big family vacation that we took not long ago to Cancun, but for now, I will leave you will a preview of my favorite picture.

Rustoleum Cabinet Transformation

We have been wanting to re-do our kitchen cabinets since we moved in.  It's something that we just kept putting off.  Since I'm pregnant (I don't think I've mentioned that on the blog yet, second child syndrome already) if we don't do it now, it likely won't ever get done.

About a year ago I used this kit and did our master bathroom cabinets.  It took me about 4 days and the reason it took me so long was because of drying time between steps.  It was pretty easy overall and was the big test before we took the plunge and did the whole kitchen.

Here is what the kitchen looked like before:

The bottom left of this picture was a big reason we wanted to do this!  You can see where the "finish" is rubbed off of that cabinet.  We used to keep the dogs in the kitchen when they were puppies and it took a toll on the cabinets and walls.  We kept the trash can there to cover it up, but it looked BAD!

We couldn't afford to replace the cabinets, and I didn't want to pay $3,000-$5,000 to have someone else refinish them.  A few hundred was really all we could do. 

 Because the floor is a redish color and we weren't changing the counter tops, we though that darker was the way to go.

I was hoping that I could get most of it done in one week and that by the end of the second week we would have everything moved completely back in and be functional again.  The second day our sitter started coughing.  I asked her several times if she was sick, and she said no.  That night she called to tell me that she had a fever and the next morning she went to a clinic and got tested for the flu.  It was positive.  I flipped out a little.

First, I was 22 weeks pregnant when we started this process.  To get the flu is bad enough, but to be pregnant and have the flu is dangerous.  Not to mention that we had waited for over 6 months to drive to Dallas to have Jack's yearly MRI to make sure he didn't have any new tumor growth.  These tests always make me nerous anyway, but it had been 16 months since his last MRI, the longest we've ever gone, and it's suggested that you go every 12 months.  Jonathan has been in the middle of a crazy project for work and actually got time off to go, and all of a sudden the flu was brought into my house.  I called Jack's doctor and mine right away and got prescriptions for tamiflu.  I used clorox wipes on every surface of the house I could put one on, and we started drinking soup stock and taking extra vitamins and herbs to help.  On Friday Jack started coughing and felt a little warm (we were leaving Monday for Dallas) so I started him on the Tamiflu and upped his herbs.  We work really hard, year round, to keep him immune system strong.  He has seizures when he gets sick so the best thing to do is to prepare his body so that it can fight something off.  Apparently his immune system is pretty strong because his fever never got above 100.1 and it lasted less than 48 hours.  He coughed a little for about 4-5 days and didn't eat much when he had the fever and didn't have as much energy as normal, but that was it.  Thankfully we still got to go to Dallas for his tests and I didn't get it at all.

Of course with the sitter being sick, I didn't have the same time to work on the kitchen.  Papa came over and was a huge help for a few hours a few days, and I had evenings after Jonathan came home, but it set me back at least a week. 

The cabinet kit is a 4 step process.  1 - clean them with a special cleaner.  Jonathan did this part since it doesn't actually involve paint.  2 - paint.  Because of the dark color, it only took 2 coats and then a little touch up.  With the bathroom I used a lighter color and it took 4 coats.  3 - deglaze.  This brings out the wood texture and really is the whole reason to buy the kit.  It was right around $70 for the whole thing (not including new drawer pulls, shelf paper, hinges, paint brushes, drop clothes, etc.) but if you aren't going to do this step, you might as well save some $$ and just buy paint.  4 - the top coat.  I HATE this step!  I am very much a perfectionist and this step is just so tricky.  If you get the finish too thin, you see spots that aren't covered.  Too thick and you have white patches.  It's a royal pain!

It took 3 days to prep the whole thing.  That was 2 days longer than we had planned!  But when you have lived in a place for 9 years and have a large kitchen, that is what happens!

Someone else wanted to paint too :-) 

 

It took 3 weeks.  We lived out of the dining room, at out way too much, and it was a royal pain, but I'm glad that it's done.  I will never do it again either!!!!  It's like installing the sprinkler system ourselves, we're really glad that it's done, but never again!  

So without further adieu, here is the final product:

 I painted everything in the kitchen that could be painted.  So not just the cabinets, but also the walls, doors, baseboards, and window seals.  Everything just needed a fresh coat of paint.  I am slightly embarrassed by how awful the walls in there were.  Of course I didn't realize how bad they were until I stared putting a fresh coat of paint on.  

The evening after I stared on the walls, my lower belly got really sore.  I was 24 weeks pregnant and was fine if I was sitting down, but the baby felt really heavy and it hurt if I stood up.  I wasn't having braxton hicks (I've already experienced those so I know what they feel like) it was just sore.  The next day was my last day standing on the ladder and using the roller and as soon as I started that I figured it out.  They were my abs.  OMG, and boy did they hurt!  I have been pretty sick the whole pregnancy so I haven't done any serious working out and I didn't realize that they were my abs because they aren't in the same place anymore.  OUCH!  

Thankfully that day I only had one small stretch of wall to do and they have (mostly) recovered.  I will say that there is no way I would have been able to do this in the 3rd trimester though.  

We still have things to move out of the baby's room and back into the kitchen and still have some shelf paper to install, but the grunt work is done!  I think it looks awesome and I'm so glad that it's done.  I feel like we should throw a party after we get the rest of the house put back in order now.  

The first thing I did today was make Jack a keto pizza, which he liked!  And I'm glad to have my kitchen back and fully functional.  Now it's time to stock the freezer with food for Jack for when I go into labor and a little for us for when we come home with a new baby.  

And before anyone asks, no, I won't help with yours :-) 

No Regreats

I can't get this to sound right, the thoughts are scattered, but I'm just going to post it or it will never get done.  Hope you can follow it.

The last few weeks have been some of the hardest of my life.  On October 1st, at about 9:00 in the morning, I got a phone call from my mom's husband that she was in cardiac arrest but stable and they were in an ambulance on the way to the hospital.  I wasn't sure what exactly happened, but I assumed a mild heart attack.  I called Jonathan and he headed home from work, but it's a good 45 minute drive, and after he got here to be with Jack I headed to the hospital.  That is when I got the call from my brother about the condition she was in, and it wasn't good.  They had her in a medically induced coma and were cooling her body temp down to try and preserve brain function.

After I got to the hospital I learned more about what happened.  She had woken her husband up that morning because he had something to get to and he got out of bed and went to do his exercises on the other side of the house and when he came back he found her unconscious with no pulse.  There is simply no way to know how long she had been there.  Ron did everything right, he called 911, started CPR, and got help there as soon as possible.  Sadly, everything that could have been done was done and it just wasn't enough.  On Wednesday October 3rd, my mother passed away at the age of 58.

FIFTY EIGHT, who the hell is relatively healthy and their heart just stops for no apparent reason at the age of 58?  It's so not fair.  In every way, it just isn't fair.

Not two weeks before we were down at Sea World together.  She walked all over the place all day and aside from being a little slow because her knee was bother her, she did fine.  I never heard her complain once.

I hate that this has happened.  A friend of mine put it best, it feels like I've been kicked in the chest by a horse and am trying to recover.  It's very weird that everything else just keeps going as if nothing has happened.  She was my mother, she was my biggest supporter, she was Jack's number 1 fan and his favorite person and life simply will not be the same without her.  She lived for her grandchildren and I am so sorry that she won't be around to see them grow up and to cheer them on.   She started asking for them when I was 15.  No joke, I think she would have secretly been thrilled had I ended up a teen mom.  But I have never seen anyone more excited to finally get grandchildren.

Don't get me wrong, she was no saint!  The woman drove me crazy on occasion.  But I am so glad that I handled the divorce the way I did.  I'm glad that I just bit the bullet and met the new guy and we started doing things with them.  I'm glad that I didn't let any of it affect our relationship.  I'm glad that I said things to her when something bothered me and that we would talk it out.  While I struggled a lot with my relationship with my mom when I was a teenager, as an adult our relationship was good.  I'm so glad that we finally got to that place.  I'm honestly not really sure when it happened, but I'm so thankful that it did.

No one expects to lose a parent when they are in their 30's.  I didn't expect this for another 20-30 years at least.  And I feel so awful for my poor grandmother.  I think she is doing well all things considered, but she has a point when she says that your kids aren't supposed to go before you.

Jack asks about Gigi every day, and usually multiple times a day.  He knows that she died and that she's in heaven now with God.  He asks to visit and to call.  It is such a hard thing to explain to a 3 year old.  The first time we went on the boat after the funeral, he didn't want to go without her.  It was really hard to talk him into going.  He seems to get that we just have Ron here now, but it breaks my heart just a little every time we have to have the conversation. 

It's funny how everything my mom gave us is suddenly invaluable.  From Jack's Halloween costume to the silly little ghosts she made from rags last year, to her beloved African violets that I am now gifted with their care.  I remember the last conversation I had with her the Thursday before everything happened, the last time I saw her at Sea World.  Although the last meal we all shared together was a bit of a disaster with melting down children and a 2 hour wait at the restaurant. 

Here are a few things to take away from this situation and a few things I learned from my mom:

• Make sure that the people that you love, know that you love them.
• How to get my way.  The women did not take no for an answer, and I watched her long enough to figure out how it works.  
• Always feed the animals.
• Drink wine.
• Life it too short to live with regret.  If you have something to say to someone, say it. Especially if it makes you uncomfortable, say it.  Have the conversation and don't leave things incomplete. 
• Allow people to be human and make mistakes.  Even if you are sure it's a mistake, it's theirs to make and they are the one who has to live with it. 
• Be generous. 
• Rules are more like general guidelines than actual rules. 
• Never forget duck food when you go out on the boat!  
• Go on vacation.  You will never regret traveling with your family!  
• Figure out how to make the impossible happen for someone else, just for the look on their face. 
• Spend time with children.   
• Drink more wine.

Why we Walk

We are headed to Dallas this year for a walk for TSC to support the TSAlliance.  There is a link to their website on the right side of the screen.  The mission of the TSAlliance is to find a cure for TSC while improving the lives of those affected.

TSC is something that we can't escape.  It's an every day reality around here.  We do our best to provide Jack with a "normal" life.  We go to playgroup, we go to the park, we can now have family meals together.  But there is no getting around the fact that he has almost daily seizures.  That half the time our plans change because he is too wiped out from a seizure to make it to playgroup or the park.  That we have to be very careful where we go out to eat because we have to make sure there is something on the menu he can have.  That we have 2 therapy session a week, soon to increase to 4 to make an attempt at getting him caught up.  There is no way around that he is behind in ever area developmentally. 

People often tell me that I am "the perfect mom for Jack" like I was somehow destine to have a child with special needs.  Let me tell you, NO ONE is prepared for anything like this and I refuse to believe that God would plan it this way.  It gets thrown at you and you either step-up, or fall completely apart.  Some people do both.  A vast majority of children in the foster care system have either medical needs or special needs or both, and sadly there is a reason for that.  People aren't picked for this, it just happens.  Believe me, if you ended up with a special needs child, you would have the same choice, and I promise, you don't feel special or at all prepared for it. 

We can't help but feel luck that Jack is doing well compared to some.  We also can't help but feel sad and guilty at the same time when we see children quite a bit younger than Jack do things that he can't do yet.  It a very strange mix of emotions that I don't really know how to put into words.  We are lucky that Jack "only" had heart tumors.  Only heart tumors.  Who feels lucky for that?  We know that kidney issues, eye issues, brain tumors are all still on the table.  I scan his face constantly for any little bump that might be a facial tumor.  Because as benin as facial tumors would be, it would be an outward sign that would set him apart forever. 

I think overall our attitudes and contexts have been pretty good.  Lets face it, no matter what he has or how bad it gets we will always love him to pieces!  He really is ADORABLE and honestly the sweetest child ever.  He loves to give hugs and kisses.  He asks for high fives from his friends and knuckles.  Yesterday on the boat he would scream "hit it!" when he wanted to go fast and we discovered that he is a little speed demon!  He also tries to comfort people when they are sad and if he bumps something he will give himself a kiss and say "all better". 

We are on a roller-coaster and there isn't much we can do but hold on for the ride.  We enjoy the good times and make it through the bad while fighting for him every step of the way.  I can cook, but even that doesn't seem to be doing much good lately.  So this is why we raise money and walk, because the only way to really make his life better, is better treatment, every therapy we can through at him, and possibly a cure.  Finding a cure really is a reach, and I don't know if it will happen in our lifetime, but anything is possible.  I refuse to dismiss it because it seems hard.   

So we raise money and we walk for Jack, for his friends with TSC, and for all of the families who have been put through this hell and who live in it on a daily basis.  Because maybe, just maybe it can help in the long run.  The Jollyville Sertoma Club has graciously bought our team t-shirts and also offered to match all donations up to $3,000.  I am hoping to at least raise that so we can get the match.  All donations need to be made by Thursday evening though so I can pick up a check on Friday morning to take with us to Dallas.

If you are willing and able, please make a donation.  Even $5.00 helps!  Click here and read more about Jack's story and to make a donation.   This little boy is worth it! 

We are still alive over here!

Sorry for such a long time between posts.  I constantly have blog posts running through my head and even a few saved as drafts that just haven't been completed yet.  So I'm just going to combined a lot of things into one and at least get something up here! 

First there is Jack's 3rd birthday.  I can't believe that he is 3 already.  The last three years have been a roller-coaster to say the least, but he is amazing.  He is smart, and funny, and such a thoughtful little boy.  He is definitely not a baby anymore and while that saddens me to some extent, I'm more overjoyed than anything to see him growing and changing and developing. 

He had such a good time with his cousins at his party and it was so much fun.  I'm just going to scatter some pictures from it in here for the heck of it.

 

Really the main reason I have been reluctant to write a blog post is because we've had a really tough month.  It's crappy news and there is just no way around it.  Jack had 15 seizures this month, which is 5 times more than the last several months.  January-March he had only 2-3 seizures a month and was doing so well.  Still not seizure free, but we could live with a small number.  As much as I hate to admit it out loud, I honestly don't expect him to ever really be seizure free.  I used to hold onto that hope but after everything we have been through, I just can't anymore.  

  So what changed.... well, he had his 3 year well check visit and I allowed him to get one vaccine.  He hasn't had any for over 2 years and he was doing so well that I was hoping that one would be okay.  The doctor and I discussed it for a while and we came to the conclusion that out of the ones he has left (he's close to being fully vaccinated) DTaP would be the best to give him because of the rise of whopping cough.  I have gone round and around about giving him DTaP because the last time we let him have that one was when he was 4 months old and I KNEW he was having seizures but the doctors weren't convinced yet.  That was the appointment when we were referred to neuro to see if it was anything to worry about.  That evening after he had the shot he had a 3 hour screaming fest that was the most awful thing every followed by a sudden increase in the frequency of the seizures and the intensity.   Anyways, fast forward to now when he's had brain surgery and his seizures are relatively well controlled and his immune system is stronger and everyone agreed that he could handle it. 

Do we know for sure that the vaccine caused the increase in seizures?  Of course not.  It is the only thing I can think of that changed around the time of the increase, but that does not mean for sure that it caused it.  However, he will not be getting the last booster of DTaP ever.  I could easily get on my soap box here about how healthy kids should be vaccinated so that children like Jack, who really do have severe reactions and consequences to these things don't have to get them or worry about getting sick, but that's not going to get us anywhere.

Needless to say I feel horribly guilty for letting him have it.  I was weighing if he would have more seizures from actually catching whopping cough (he always has more seizures if he's sick) or more from the vaccine.  It's one of those things that I will just never know and I can't go back and change it at this point so we will just move on.  We have increased his meds and if that doesn't work there is talk of putting him back on the full ketogenic diet.  We will simply have to see what happens.   

As for me, this weight loss challenge is over this weekend.  The last month has been really tough.  My trainer got fired from the gym so they stuck me with this new guy.  It was not a good match!  I'm tired of having trainers who like to show me off, to be honest.  It's like they have some competition going to see who can have the most people stop and drop their jaw at what they are putting someone through. 

I have been stuck at the same weight for a month now and it's ticking me off.  I can understand a plateau lasting a week or 2, but a month is ridiculous.  In that month I did lose 3% body fat so I must have been gaining muscle, but I didn't even drop a clothes size.

Anyways, over the whole thing I have lost 21 lbs, 11% body fat, and dropped one dress size.  I figured that should be at least 2 dress sizes, but clearly not.  Bummer.  Not too bad, but also not anywhere near where I want to be.  I'm just going to keep plucking away at it.  I do feel tons better and I know that I'm a lot stronger so I just have to keep working at it. 

The only other big thing going on is that we are doing a walk for TSC as Team Jack-A-Roo again.  It is at least something positive to put our energy towards.  The link to the donation site is here.  Even small donations help!  Please consider helping out if you can.  We are making an attempt to raise $7,000 in only 2 weeks which is a bit ambitious so we need the help!