Bible school

The boys went to Bible school this week. They had a great time. They ended the week with a water day. The fire department came and got the kids wet and they played with water balloons. They learned so much and I am very proud of them. We bought the CD and they sing and dance every afternoon. It is so cute!

4th of July weekend

Friday July 4-6 2014

I love holidays!! We had a great time this weekend. The weather was perfect so Aaron was able to be outside a lot!

Friday was a family day. Friday night the boys went to the Tin Caps game and saw the fireworks. They had so much fun. Aaron loved hearing all of the fireworks at night. He didn't get very much sleep but I loved hearing his giggle.

Saturday we got up early and went to the zoo. It opened at 8am so it was perfect for Aaron. It was empty and the boys had fun. Aaron loved hearing Bill the Lion roar and he heard a pig for the first time. Taevon  enjoyed being outside and seeing everything.

Sunday we got up early again and went to the playground. We have to do things early in the morning because Aaron takes his meds and naps from 10am to around 3 or 4pm. It has been so fun to be out as a family this weekend.  We had a wonderful time this morning. We were the only ones at the playground for awhile. Aaron and Taevon loved the swings and the boys at the playground all to themselves. We took a walk before we left and were able to get some cute pics of the boys. This was a great weekend.

new neurologist

Monday June 30, 2014

Aaron had his appointment with his new neuro today. She was a little concerned about his level of consciousness. She wrote us a script for labs (to check levels of Vimpat and Keppra) and another EEG. We will get his labs done Wed morning before Tae's aqua therapy and his EEG is scheduled for July 11th. We talked about his meds making him very sleepy and the fact that he does not sleep very well at night. I usually try and schedule all of his appointments before 10 am but I couldn't get an early appointment this time.

I am so tired of getting additional referrals and appointments. I am exhausted and just want to have a little break from all of these appointments and new issues. Today I am feeling defeated. I want to just pick up and go on a family vacation on the spur of the moment. I don't want to plan and plan and make sure I have enough meds, formula, feeding tubes, syringes, ER rescue meds, Drs numbers, extra feeding pump, suction machine, a list of the closest hospitals.....I want my kids to experience all of the fun things and make all of the great family memories....tomorrow will be better...my kids are happy and we have made lots of memories together as a family. As always I will continue to plan and plan so we can go as a family. Just a trip to the zoo I pack so much stuff it looks like we will be gone for a few days. But with my kiddos I never know...
Even with all of the extra planning it ends up being all worth it!

another appointment

Monday June 23, 2014

Aaron saw Dr C this morning. It was a good appointment. He thought Aaron looked very good. He will see him again in 2 months. He lost a little more weight and we talked about his seizures and his temp. He is controlling his temp a little better but it is still an issue. Right now we have very good control of his seizures and I am very thankful for that. He wants to keep his feeds the same but might adjust it in the future depending on his overall health. I am so thankful for the amazing group of Drs I have taking care of Aaron.   He is the healthiest that he has been in a few years. I cherish every moment I get to spend with this sweet little boy.

Cyclone

We bought a Radio Flyer Cyclone that was recommended by Aaron's PT.  He uses it in therapy and he really enjoys the motion. The boys LOVE it. Keagan got on and he just took off. He squealed the entire time. Nicholas loved going in circles. I feel so incredible blessed to be able to stay home with the boys. I love the time we spend together as a family. I LOVE being a mom!

block party

Saturday June 21, 2014

The boys were so excited to go to the block party today. They had inflatables, a dunk tank and of course fireworks. The boys loved the dunk tank. Nicholas did it on his first try. We were able to see all of the fireworks from our driveway. We really enjoyed the time we got to spend together.

Taevon is 7

Saturday June 21, 2014

HAPPY BIRTHDAY TAEVON!!! I can't believe you are 7 years old today. You are such a special little boy and I am so lucky to be your mom. I remember the first time I saw you and I couldn't wait to hold you. You are the sweetest little boy and your smile melts my heart. I LOVE rocking in the chair with you all afternoon. You have the sweetest giggle. I can't believe how much you have changed in such a short time. You are truly a miracle!!

We are celebrating your birthday with a Veggie Tale party. I can't wait to see you play with your balloons!!

                                                   HAPPY BIRTHDAY MY SWEET TAE