His Little Heart

Friday, December 30, 2011

Joel had an echo of his heart + an ultrasound of his kidneys on the 22nd. We found out today that the ultrasound of his kidneys was normal. His heart, however, has rhabdomyomas (non-cancerous tumors) on it. Definitely not the news we wanted. But the neurologist said from what she could see the tumors didn't appear to be in any of the major parts of the heart which is good news.

So, the next step is for Joel to see a cardiologist.

Also, we finally have an appointment set (in March) to have his eyes checked. Please pray the results for that will be normal!!

(Catching Up) Thanksgiving / A Trip To The South

Friday, December 23, 2011

We spent our Thanksgiving traveling. We took a red-eye flight to the South.. and let me just tell ya.. we will never fly a red-eye ever again. Oh man, it was terrible. Thankfully Joel slept during the long flight, but Jer and I didn't get any sleep. We were beyond exhausted when we finally arrived in Mississippi. The long trip was completely worth it though after I was able to see family that I've missed!

We had a birthday party for my nephew on the first Saturday we were in town. The party was suppose to be a surprise but the stinker figured it out! He had no idea we (Jer, Joel, and I) would be there though, so the look on his face when he walked in and saw us was priceless! He ran over and gave me the biggest hug I've ever had! He kept telling everyone it was the best birthday he has ever had--just because I was there. :)

Other highlights from our trip:
  • finally getting to meet my new nephew, Eli!
  • seeing my baby play in my old room with his cousins
  • taking my nephew & niece bowling
  • taking Joel to the same beach park where we took our engagement pics
  • spending time with a good friend/Joel's godmother
  • getting my nose pierced (thanks to peer pressure from my hubby & mom of all people! haha)
  • watching football games in the "Saints room" at my dad's new house

We had a fun trip, but we definitely missed our own beds. And yes.. we kinda missed WA too.  ;)

Follow-Up EEG Results

Wednesday, November 23, 2011

{On the ferry headed to the big city}
Yesterday Joel had a follow-up EEG + a clinic appointment to see the neurologist. The EEG went well. The worst part of the whole thing is having to keep him still while the tech places everything on his little head. He usually cries big big tears during that process which breaks my heart & makes me want to cry with him! But after everything is placed on his head I am able to hold him and he ususally falls asleep right away. (We have to keep him awake two hours prior to make sure he will be sleepy for the test. If he moves around during the test they won't be able to get a good reading.)

The neurologist said the EEG showed discharges, but that is an improvement. Dr. R, the neurologist, said the discharges are basically like small sparks in ash after a wild fire. (Does that make sense?) So unfortunately he is still at risk of having more seizures.. but the good news is that the medicine is working! In fact, Joel has been seizure free for almost three months!!!

{Waiting for lunch at J0hnny R0ckets}
We finally have appointments for the tests to check his heart, kidneys, and eyes. Please keep praying!

First Halloween

Tuesday, November 1, 2011

Our little monkey :)
We stayed home on Halloween and handed out candy to trick-or-treaters. It was fun! Joel liked going to the door to see all the kids dressed up. He also had fun trying to get the candy bowl that I had set up by the front door. ;)

We had Fall photos taken a few weeks back, and were able to get a couple of Joel in his monkey costume. He was so cute!

(Catching Up) A September Day in Seattle

Saturday, October 29, 2011

At the beginning of Sept we spent a day in Seattle to celebrate my birthday. We started our day at Pike Place Market. We went on a week day hoping we could avoid large crowds, but no such luck. It was very crowded--mix that with a baby + a huge stroller, and it was little overwhelming at times. Overall we enjoyed it though. My favorite part was all the beautiful flowers for sell. I wanted to buy all of them!!

We headed to the EMP Museum after walking around the market for a while. I mostly wanted to go the museum just to see the Avatar exhibit (yes, I am a nerd like that), but the rest of the museum turned out to be really cool. It's definitely something you should check out if you are ever in Seattle.

Support Group & Denial

Monday, October 17, 2011

It's amazing how God works!

The other night while I was catching up on blogs I somehow ended up reading through the old 'Show Us Your Life' topics at Kelly's Korner. I clicked on the SUYL - Special Needs Families link, and as I was scrolling through I spotted something about TS.

Long story short - thanks to Kelly's Korner/SUYL I found Brittany from Grey is the New Black. (Brittany has a 3 year old son with TS.) And thanks to Brittany I have found a wonderful support group for TS mommies.
. . .

I couldn't wait to share with J about how I found a support group + other information on TS. I was rambling on and on about everything, waiting for some sort of response from him, but he just sat there.. quiet.

He isn't ready to discuss those things just yet. He thinks he might be a tad bit in denial. &Honestly.. I've had moments where I have felt that way too. I guess it's because Joel hasn't had seizures in weeks *PRAISE THE LORD!*, and he seems to be developing right on track. Plus I think it's because we didn't actually see the MRI results with our own eyes. Maybe that would have made it more "real" to us..


Saturday, October 8, 2011

I'll never forget the first time we went to the children's hospital... As we walked through the area to check-in we passed many sick babies and I had to fight back tears more than once. When we sat down in the waiting area I looked at Jer and said, "coming here makes me realize just how blessed we really are.. I mean, we are only coming here for a cosmetic thing.. and there are so many people here for something worse."

We now know that our baby boy has more than just a cosmetic thing. He has a rare genetic disease that has caused benign tumors to grow on his brain. I could sit around, worry, and question "why our baby, Lord? Why??"  but I'm not.. and I haven't. Instead I'm choosing to trust God.
 "Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."  Philippians 4:6-7
God has definitely given me peace. That's the only way I know how to explain it. I've been a worry wart all my life but I haven't worried about this situation once.

I know He is in control.

MRI Results

Wednesday, October 5, 2011

Joel had an MRI of his brain yesterday afternoon. Everything went well. We couldn't feed him four hours prior to being sedated which was the worst part of the whole thing. I think this picture shows you how Joel felt about that..

The neurologist called this morning and said the MRI showed that Joel does have tuberous sclerosis. It's definitely not the news we wanted, but thankfully there were only a few small lesions on his brain and they are non-malignant. {The irritation from these lesions is what was causing the seizures.}

So.. now the next step is to have more tests to check his other organs (heart, kidneys, eyes) for lesions.

Please continue to pray for our precious baby. Pray the other tests will be normal, and pray that the lesions on his brain won't effect his development/learning as he gets older. Also, please pray for Jer and I. I think the hardest part of all this is that we don't have our support system here.

Pumpkin Patch

Monday, October 3, 2011

On Sunday we spent the day at a local farm with our friends the C's. We walked a corn maze, picked out Joel's first pumpkin, and attempted to take took a couple family photos. We had a great time with our friends, and definitely enjoyed the beautiful autumn weather! (I may or may not be getting spoiled by the PNW weather. I will never admit it though. HAHA) I can't wait to take Joel again next year. :)

Saturday, October 1, 2011

Thank you for all the prayers and support. I'm beyond happy to report that Joel hasn't had any seizures in a few days!! Praise the Lord!! Please continue to pray that his MRI will be normal, though. He is having the MRI this coming week, and he will have to be sedated for it.

I'm Back, and I Need Prayers For My Baby!!

Saturday, September 24, 2011

A couple months ago I lost all the pictures on my blog. I'm not sure what happened but it seriously made me want to cry (let's just blame those terrible postpartum hormones ok?), and that's when I realized I needed a break from blogging. It had become just another stressor in my life instead of a fun outlet for me.

I still haven't recovered all the pictures, but I got over it. There are more important things in life to worry about. Like my precious seven month old son for example...

Joel was born with linear epidermal nevus on his right arm/shoulder. I never mentioned it because we didn't know much about it until recently. Our pediatrician didn't have a clue what it was so he sent us straight to a specialist. We were told that his case was very mild, he shouldn't have any problems, and it's mostly a cosmetic thing.

Well, last Thursday Joel started doing a weird head nodding thing. He would drop his head down and then quickly bring it back up. It freaked us out but we thought maybe he was just super tired because it was past his nap time. The next day he did it again so I called a nurse. She suggested we bring him in to see the doctor. We took him to see the pediatrician on Tuesday, the 20th. He wasn't 100% sure what was going on. He didn't think it was serious because Joel was staying alert during the little episodes. But since Joel has the epidermal nevus he decided to consult with the specialist to see if it could cause what he was doing. Turned out it could, so they sent us to the big city for an EEG on Thursday, the 22nd.

His EEG went well but it showed some abnormal brain waves. We had a consult with two neurologist right after his test, and they seem to think he is having seizures because of the epidermal nevus. So he is now taking seizure medication to hopefully stop it. They want to do another EEG after a few weeks to see how it's working.

They also want to do an MRI (he will have to be sedated for it) in 2 weeks to check for tuberous sclerosis, which can cause non-malignant tumors on the brain and other organs.

We're still trying to process everything, but I'm sure you can imagine how scary all this is for us. We're hoping and praying the medication will start working soon for his seizures. It absolutely breaks my heart when it's happening because he looks at me like "what's going on momma, make it stop." I feel like I'm failing him as his momma because I can't just kiss it and make it better. :(

So please keep my baby in your prayers.. Pray the seizures will stop, and pray the MRI will be normal.

I will post an update as soon as we know more.

Point No Point & Hurricane Ridge

Friday, July 15, 2011

A few weeks after we returned home from our trip we bought an SUV. It was much much needed! My compact car was too small for us as a family of three. In fact it was so small that we would have to move the passenger seat up as far as it would go just to fit Joel's car seat in. No I'm not kidding! haha It was ridiculous! We knew we needed something bigger, and thankfully we found the perfect SUV on the first day of looking. We seriously luuuuvvv it. Anyway ~
Now that we can all fit comfortably in a car together we decided it was time to explore Washington! Our first adventure was to Point No Point. It was nice.. Nothing to write home about though.

PNP Lighthouse

Our second adventure brought us to Port Angeles. We spent a few hours walking around downtown enjoying the beautiful weather. For dinner we went to the restaurant where a fictional character from a famous vampire book went on their first date. It was extremely overpriced for what they had to offer, but hey.. at least we can say we went there.

After dinner we headed to the Olympic National Park to visit Hurricane Ridge. J had been dying to go since we moved here, and I'm so glad he talked me into it! It was BEAUTIFUL!! The drive up the mountain was scary at times but the view was so worth it.

The drive down

4th of July

Tuesday, July 5, 2011

We had a great time celebrating Joel's first 4th of July!

Our fun started on Sunday night.. We stayed up past our bedtime and joined our friends, the C's, for a local firework show. {It was the first time I've ever been freezing cold while watching fireworks by the way, which was super weird to me! I'm use to sweating my butt off in the southern heat!} We were nervous about how Joel would handle the loud booms but HE LOVED IT! He seriously giggled the entire time! It was too cute!! (I've been kicking myself for not taking a picture or a video of him that night!)

On the 4th we hung out with the C's again. We went over to their house and had a yummy lunch. Afterwards we all went to a street fair in B-Island. The fair turned out to be really lame but we enjoyed the company, sunshine and fresh air.  :)

Working 24/7

Friday, June 24, 2011

I know, I know.. I've been a horrible blogger lately. I have a good excuse though!
This little man takes up all of my time these days. :)

The only time I'm ever online anymore is when I'm nursing the baby. I use J's ipod to check my email and read a few blogs, but I never have time to actually sit down and write type a whole post. In fact, the only "me" time I ever get is when I'm taking a shower, pooping going potty, or if I stay up past my bedtime. {Yes, I have a bedtime now or else I will be a zombie when Joel wakes up at 7 AM wanting to play.}

I read a bunch of mommy blogs and I often wonder how some of those ladies do everything that they do. You know which ones I'm talking about--the ones that manage to keep their house spotless, cook dinner for their husband every night, take care of their babies, and somehow find enough time in their day to style their hair and get dressed in the latest fashions. They need to share their secrets because right now I'm convinced they are either really good liars story tellers or just aliens!

My days are filled with diaper changes, nursing, and doing my best to entertain a four month old playtime. It doesn't sound like much when you read it but don't be fooled.. it's a 24/7 job, and I'm lucky if I get a 20 minute break. As far as keeping up with housework--HA! I usually have to clean up the house first thing in the morning or else I won't have the energy to do it later in the day. Oh and forget trying to look cute for my husband! I'm doing good just to have clean hair and a clean shirt!

So anyway my point is -- until I learn the secret from those super [alien] momma's or can afford to hire a personal assistant, I will try to blog as often as I can!


Saturday, June 11, 2011

After Joel was born he would cry and make a "nee-nee!" sound if he was hungry. We thought it was cute so we now refer to breastfeeding as Nee-Nee. When we see that he is hungry we will say "he wants the Nee-Nee."  :)

I have been exclusively breastfeeding giving Joel the Nee-Nee {on demand} since he was born. Before he was born I decided I would TRY to at least breastfeed until he was 6 months old. Well he is 4 months so his pediatrician recently suggested that we start giving him a bottle once a day so he can get use to it and to give myself a break. Well we have tried twice.. once yesterday and again today.. and both times he didn't want anything to do with it. And honestly.. I'm ok with it. I love the bonding time that breastfeeding has given me with him. He loves to hold my hand/fingers while he is nursing and it just melts my heart! :) I do feel a little bad though, because I can tell that J really wants to experience giving him a bottle. So I'm torn on what to do -- should I continue to give him just the Nee-Nee, or should I keep trying to see if he will warm up to the bottle?

&Truth be told, when I was pregnant I was totally creeped out by the whole breastfeeding thing. The idea of milk coming from ME was weird! Come on you know you probably thought/think it too! haha The first time he nursed it all felt so natural though, and I feel proud that I've been able to do it for as long as I have.

Wee Bit Wednesday

Wednesday, June 8, 2011

I've seen this on a few other blogs so I thought I would join in on the fun!
Head over to Leigh Ashley's blog if you want to join in too! :)

{one} how many times have you been a bridesmaid/maid of honor? 
Just once, recently for my friend A's wedding.
{photo taken by Captured Moments Photography}

{two} what’s the last thing your do before you fall asleep at night?

{three} you just won your dream vacation, all expenses paid.
where are you going?
Ireland and/or Italy

{four} what is your favorite outdoor activity?
Anything to do with the water. Boating, swimming, fishing.. I think you get the idea.

{five} as a child, what did you want to “be when you grew up”?
did you end up there?
I wanted to be a ballerina, astronaut, and a teacher. I'm currently a stay at home momma, which I love and wouldn't trade for the world, but I'm still hoping one day I can be one of those things. Especially an astronaut.. haha! How cool would that be!
{six} what are 3 things your dream home would have that you don’t currently have?
Is it sad that the first thought that came to my mind was central A/C? haha I really miss having that! Anyway -- my dream home would have a swimming pool, a bigggg backyard (complete with a garden), and wood floors.

{seven} what’s for dinner tonight?
Chicken bacon alfredo pizza. Sounds weird but it's really yummy!
{eight} if someone stopped by your house unannounced on a typical Saturday night, what would they find you doing?
Before I became a momma you would find me either watching movies or playing board games with my husband. Nowadays, if it's before 7 we are trying to watch a movie and keep Joel entertained. If it's after 8 we are in bed snoozing.

{nine} what’s your average monthly water bill?
I honestly have no idea because base housing deals with that.

{ten} what do you do to relax?
Relax? Um.. what's that? HA! I use to take a bubble bath or read a book, but I haven't been able to do that in four months. ;)

A Few Highlights From Our Trip To The North

Tuesday, June 7, 2011

J's family had a surprise baby shower for us! It was the sweetest thing ever! It meant so much to us since I wasn't able to have one while I was pregnant. J and I had fun opening all the goodies everyone brought for Joel..227654_10150198603132847_575817846_6906891_5787383_n

The day of the shower we also celebrated J + his cousin's birthday. It was the first time in years that they've been able to celebrate together!
{J would like you to know that the party hats were NOT their idea. HAHA!}

The day after the shower/birthday party was my first Mother's Day! :) I woke up that day with a VERY thankful heart. For years I thought I would never be able to be a mother, so to say it was a special day for me would be a huge understatement! I still can't believe that God blessed us with this precious miracle/cool little dude! =P


We did a bunch of stuff during our trip, but I think my favorite part was going to Amish country. J's mom took us and we had a great time. I lovvvvvved all the shops we went to!

Our Trip To The South - Vacation Recap 1

Sunday, May 29, 2011

We celebrated Joel's first Easter while we were in the South. The Easter Bunny brought lots of goodies that he loved. ;)DSCN0418_2 

On Easter we went to a crawfish boil. It was a really nice day but we ate way too much food (crawfish, shrimp, gumbo, & lots of desserts) so we were in a food coma for the rest of the day! HA

The main reason we traveled home to the South was for my friend's wedding that I was a bridesmaid in.

There were peacocks roaming around the venue.. during the ceremony one walked right in front of the bride & groom and showed everyone its beautiful feathers! It was awesome!

Me and my cutie! :)

We had a baby dedication ceremony a few days later at the base chapel.
It was a last minute thing (hence my less than fabulous outfit), and I'm SO thankful that the Chaplain agreed to do it for us. It was really special. Looking back I wish I would've had someone record it for us!

The only person other than family that we invited to the ceremony was my friend A. We have been friends since we were 12 or 13. When J and I were discussing the whole godparents/who would we leave the baby with in case something happened thing, I didn't even have to second guess that it would be A.
There aren't many people you can trust in this world, and for me to trust someone--especially with my son--says ALOT! I know without a doubt that if something happened to us A would take care of Joel like he was her own. That's just the type of person/friend she is.
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