Tuesday, December 29, 2009

2009 was a great year...

Despite all of the issues thrown our way. These pictures prove that through it all, Jayden is still a happy little boy and a blessing in our lives!

So here's to 2010...may it be a year filled with health and growth for our family! Have a Blessed New Year!

Monday, December 28, 2009

13 days...

I may as well use my blog as a journal as well for the seizures. 13 days after adding an additional medication for the seizures, he had another one tonight. It was very short and he just seemed to hallucinate for a while, freaking out saying he saw a monster, and then he got VERY dizzy and wobbled and fell all over the floor. My husband picked him up and his eyes couldn't focus, they just kept rolling. Now he's exhausted and cannot sit up b/c the room must still be spinning to him. I'm calling the Dr tomorrow morning to report the seizure. A part of me is PRAYING that they do not increase the dosage on the Keppra b/c that medication has caused his behavior to spiral OUT OF CONTROL, but then another part of me just wants them to do whatever they can to stop these seizures.

Wednesday, December 23, 2009

Betty Crocker ROCKS!!

Yesterday evening, we made a stop at Walmart for some last minute stocking stuffers. While there, I stopped in the baking aisle to get a box of cake mix to make a recipe that my friend, Lyndsay, posted on her FB page. Fudge Crinkles...yummy! I decided I'd make these cookies for Santa (wink, wink). So as I am scanning the shelves for the correct cake mix, I see something that made me gasp!! Betty Crocker GLUTEN FREE brownie mix!!! Yes I get very excited when I find something that my baby loves that is now GF, and I especially get excited when it's an regular brand and not a GF specific brand. The GF specific brands usually cost $5+ a box. Betty Crocker's Brownie mix was $3.50 at Walmart (still a bit more than the regular mix, but certainly not as bad as GF specific brands). There was also the cake mix. I didn't see the cookie mix at Walmart, so grabbed the brownie mix and threw it in the basket. My husband wanted me to throw a few in the basket, but I want to be sure it's any good first. Not that I don't have faith in Betty, but most pre packaged GF baking mixes are VERY grainy. So grainy that Jayden won't bother eating them. It's almost like eating warm sand. Brownies shouldn't be bad though b/c cocoa powder is safe and it helps to keep the mixture moist. We will see. When I bake Santa's cookies (wink, wink) we'll also have him some GF brownies just in case he wants to try those. I'll let you know what Santa thinks (wink, wink)!! Also, I don't think I mentioned it here, but I baked a GF angel's food cake from scratch for Jayden's birthday party and it was DELICIOUS! Fluffy and moist and not so grainy. All of the kids loved it. I'll share that recipe soon, but for now, I need to get back to my elf duties...assembling toys for my spoiled little boy!!

Tuesday, December 15, 2009

Another one...

Jayden had another seizure today. It was very short, but he was still just as lethargic and non responsive as he was when he had the seizure on Thanksgiving day. The ER doctors told us that it's okay for him to sleep after the seizures b/c they wear him out, so we let him go to sleep and I am eyeing him like a hawk. Surprisingly, I didn't freak out when he had the seizure like I thought I would have. I just felt sorry for him b/c he was so uncomfortable and scared. I am worried, though, b/c I want to know why he keeps having them. I want to know what's wrong with him. I want the Dr to fix it. I left a message for the nurse and I'm waiting for a call back. Please pray for my baby.

Update: The Dr just called us back. Jayden's MRI is normal (THANK YOU LORD!!), now I can stop inspecting his head for lumps and knots that don't belong there! However, his EEG is still abnormal, but that is no surprise b/c we are seeing the seizures happen. So he may be epileptic. The Dr is starting him on the pediatric dose of Keppra, in addition to his Trileptal. The Dr warned us that Keppra is known to cause behavior problems in small children. This could be a problem b/c Jayden is currently in behavior therapy. But the seizures have to get undder control, so we will do what we need to do. Hopefully once the seizures are controlled, his behavior will get better. I have noticed a difference since he started the Trileptal, so hopefully the Keppra won't make much of a difference. He has to go back in to see the Dr in Jan, so I will keep you posted. Please keep praying for us!

Monday, December 14, 2009

A surprise congratulations!

I'd been planning a surprise party for my husband, since July, to celebrate his retirement from the Air Force. I started the planning so early b/c I know that all of his friends and family live hours away. His parents and his sister and brother live about 7 hours away, but his cousins and grandma (whom he hadn't seen in over 20 yrs) live in New Jersey, so they are a plane trip away and I wanted to give them time to plan ahead. I found out from my sister in law that they got a plane ticket for Mike's grandma and that she would be coming to the party. I was SO excited!!! Mike had his official retirement ceremony in November. He basically begged his parents to come and I felt so sad for him. I wanted to just tell him "Look. I have a party planned for you in December and they are coming down then." But I didn't, and I'm so glad I didn't! My parents did drive down to surprise him at the ceremony though. I continued to keep his party a secret from him. As the party drew near, I was just so excited! Then Saturday came...

RAIN, RAIN, RAIN....all day long. Early that morning I get a call from my mother in law. They are not coming. I was so disappointed. That was the main thing I was looking forward to for Mike. I couldn't shake that disappointment. Then things just started falling apart. The rain wouldn't stop. My mom had to attend a funeral and was running late to get back to the house to help set up. My dad wasn't feeling well. I was doing everything by myself and was so overwhelmed. The rain continued and just got worse and worse. Then, city wide flooding. Basically the flood of 09. Of all days!!!!! I called the DJ and asked her to come an hour later. Then the text messages started coming in. People couldn't make it due to the weather. I just kept saying the serenenity prayer over and over again b/c this was out of my hands. All of my planning and hard work seemed to be washed away in this stupid flood. But the party was going to go on. We were in a hotel in Algiers, so we drove back to the hotel to get dressed and there was horrible street flooding. By 8:30, the rain had stopped and when we left the hotel room the water was receding. Thank God. I sent a text to a few people saying that the party was still on and that we would just start late. Then on the ride to the party, I notice that my camera bag is empty!!!! No camera. Oh my God the devil was so busy :( Then Jayden is in the backseat saying "Wayne where are you?!?!" He gets frantic over that b/c Wayne is no where to be found. We left it in the hotel room...Turning around was not an option b/c of the street flooding and we couldn't be sure what roads were blocked or not. BIG SIGH and I was fighting back tears. My cousin called at that point, to say she wasn't coming. I just said "okay, it's fine b/c I don't think anyone is going o make it. But what can I do??" My cousin heard the defeat in my voice and she got dressed and came to the party. She told me that by the time she got dressed and on the road the water went down.

We got to the house and my mom had the house decorated so nicely! She screamed out SURPRISE about 4 or 5 times but Mike never caught on. My mom had to actually say "Mike, surprise, this is YOUR party!!" and we showed him his cake. Then he caught on! It was so funny. I was disappointed at first b/c I had high expectations for this party. I'm still disappointed in some of my family who never seem to come out to anything, but in the end I know that everyone who knew how important this was for us was there and celebrated with us. By the time the party the got started the rain was gone and so was the water. A few more people came by and said all of the roads were clear, but fog was setting in really thick. We ended up having a really nice time with those that did show up. It turned into a very fun night despite all of the set backs. I'm so proud of my husband!

Pictures were taken, but I didn't have my camera so I have to wait until I get the pictures from my sister and my brother. I'll share them when I get them :)

Tuesday, December 8, 2009

10 on Tuesday

1. I got the results back from my MRI last week which showed severe sinus inflammation that the Dr believes could be chronic since all of my migraines seem to start off as sinus headaches. He is referring me to an ENT to discuss sinus surgery. Until then, I am taking Levaquin and Nasacort.
2. This morning I went from no headache to full blown migrain in less than 5 minutes. Since it was time for me to take my Levaquin and Nasacort, I just added 2 excedrin migraine pills to the mix and prepared myself to spend the rest of the day in bed for a migraine I couldn't get rid of. Well, guess what?!?! NO MIGRAINE!!! That's a record people. I've never had a non prescription medication take a migraine away, although my mom is thinking that the Nasacort helped :)
3. My boy is talking people! I mean really talking. And I'm loving it! He asks himself questions and answers them, he makes his toy soldiers talk to each other, and he's putting so many 3 word phrases together. To all those people who told me that I would be wishing he wouldn't learn to talk b/c he would never be quiet...YOU WERE WRONG!! I love to hear him use that sweet voice.
4. I am feeling like I need at least a month vacation from my photography business. I just feel burnt out. I imagine lots of potographers feel this way aroun this busy time of year. But honestly, I just may take that vacation!
5. Did you know I opened an etsy store?? I sure did! Check it out www.beanies4babies.etsy.com I have a serious addiction to knitted baby hats so I'm so glad I can use my creativity to create whatever it is I want :)
6. I found out that we have 4, yes FOUR, doctors who live in our cul de sac! And get this, one of them is a neurologist. It's comforting to know in case of an emergency.
7. Jayden has been doing well, but he's still having headaches. We are hoping to get results from his MRI and EEG this week. Praying for good news!!
8. I'm getting bored with my monthly menu lately. It always seems to be the same thing over and over again. Can anyone share their favorite recipes or favorite sites for recipes?
9. I finally retired my blackberry and will be switching to an iphone. I think it will be delivered today and I'm very excited about all of the apps I can get. I'm hoping I can find a good gluten free app b/c I'm always so nervous about where to find food for Jayden when we travel.
10. BIG, FUN, EXCITING weekend coming up for us!!!!!

Sunday, December 6, 2009

To my 3 year old

So, this letter is 2 days late, but mommy was VERY busy preparing to make your birthday party special and enjoyable for you! You had a great time and you LOVED your cake. Mommy was so happy you had a great time.

3 years have gone by, already. WOW. Those 3 years have been like a roller coaster ride, going 90 miles an hour. A whirlwind of ups and downs. You've made so much progress this year, despite the many setbacks and obstacles you've come across. You are talking so much more now. You have even started to request things by saying "I want ...." I'm pretty sure whoever I was on the phone with when you came up to me and said "I want milk", may have thought I was nuts when I started celebrating and cheering over your new accomplishment. You are also surprising me with hos well you're doing with potty training. Even when I am lazy and put a diaper on you, you walk up to me and say "Pee Pee" so that I can remove your DRY diaper and let you pee pee on your potty. You LOVE candy and you are very motivated by it. You have moments where you ignore what we say, but the moment you hear that "C word" you quickly respond! This year, you are into super heroes. You love Spiderman, but Buzz Lightyear is your favorite. You are now in a big boy room, complete with a big twin sized bed that you love. You even ask to take naps now. I guess your toddler bed really was getting confining. You loved going to school and would even point it out if we headed out that direction. Mommy is sorry that we had to take you out, but the teachers there were not able to give you your medication in the event of a seizure, so we had to for your safety. We are working on getting you in another school soon. I am so proud of you. Jayden, you have taught me so much in your 3 years here in my life. There are so many things that I thought I'd never be able to do or deal with, but you've shown me that I can do it all and more. I never thought I was strong enough to take on all of your medical needs. To be able to dispense such critical medications to my loved one. To be able to act quickly and calmly in case of an emergency. But I've done it all and it just feels like second nature to me. Like I was put in your life to do just that and that you were put into my life to show me that I can do it. I thank you for showing mommy just how strong she can be.

Jayden, I love the little man that you are growing up to be. I am so thankful that God blessed me with a lovable, active, smart, polite, observant, and happy boy like you. Mommy loves you!!!


1 year old

2 years old

3 years old

Tuesday, December 1, 2009

Stay Strong

I'm pretty sure that I'm so emotional lately due the fact that I haven't been able to get a good night's sleep since Thursday's incident. I check his monitor constantly. I go into his room and make sure he's breathing. If he doesn't get up at his usual time in the mornings, I run to his room to check on him. It's so hard to be worried about your child 24/7, and Sunday we believe he had a petit mal seizure after dinner b/c he was very clingy, whiny, and tired for about 45 minutes. I was afraid to even put him to bed.

We are driving out to Slidell tonight and Jayden's MRI and EEG are scheduled for tomorrow morning and then he will see the Dr right after his procedures, to discuss the seizure(s) he had last week. I am so worried that we will get bad news from the tests. I keep reminding myself that God is in control and Jayden's life was planned out before he even came home to us. I just fear that I simply cannot handle anymore bad news. But God knows better. We got the call in September of 2006, about a baby boy due in November. The birthmom was completely healthy, no signs of drug or alcohol abuse. The only problem she had was gestational diabetes. Jayden was born a healthy baby boy. Now had we gotten that same call, about the same baby, only with the knowledge that the baby boy had autism, celiac disease, and a seizure disorder and that he would require a special diet, therapy 3 days a week, medical care, daily medications, etc, I admit that we would have probably said no to the caseworker. That we couldn't handle a special needs child as our first. But God knew better. Jayden had health problems since the day he came home and although I had Drs tell me that nothing was wrong, I kept fighting until we found out what was wrong. I never knew I had the strength, but God knew. He trusted my husband and I to take care of one of His special angels. It gets so hard and there are times (like now) when I feel weak and ready to give up, but then I look at my precious son, my angel from heaven, and I remember that he needs me to stay strong for him. So I'm going to stay strong!