Monday, July 30, 2012

The Princess and the EEG

The last 2 weeks have been crazy, busy. I haven't blogged at all lately, so I want to catch you up a little on our craziness and mostly just record this for us. Last week we visited family in Texas. We had lots of fun and I have pics to post, but first I will post some pics from the week before. So, two weeks ago Mia Grace had another seizure. She had it in her sleep early on Wednesday morning. I wasn't able to catch it on video like the doctor wanted me too. I called to leave a message with the nurse to let them know she had another seizure and to find out when her 24 hour EEG was scheduled. 

So far she has not had any seizures while she is awake. They really don't seem to affect her day much at all, so after I left the message with the nurse, we got ready to go to the children's museum. While, we were there the nurse called. We talked about what was going on with Mia and she told me the EEG was scheduled for October 3rd. I was not happy that we would have to wait over 2 months to have this test and get some answers for our sweet girl. She said she would put us on the cancellation list and we would get a call to come in earlier if there was a cancellation. I didn't have much hope for this happening, because I figured the list was probably pretty long.

I asked friends and family to pray that we would get an earlier date for the test. On Thursday morning, as I was talking to my friend about how sad I was that we had to wait until October for the test, we got a call. It was from the nurse saying their was a cancellation and asking if we could be there in 2 hours. I couldn't believe it. God has already answered so many specific prayers for our girl and this was another answered prayer. Yay! I called Justin who made arrangements for the boys for the next two days, while I threw things in a bag that we would need for our overnight stay at the hospital. 

Mia and I arrived on time for our appointment and got her all checked in. I asked the lab tech if we were the first name on the cancellation list and she said, "no, you were actually the last, but you were the only ones I got a hold of that could come today." Wow! Gotta love God's timing. 
 Mia was such a brave girl! First, she had to have these electrodes stuck all over her head. I took pictures of her and let her look at them to keep her happy during this procedure. She wanted me to take some pics with her, so I did. She had to be very still, so I just tried my best to keep her happy and still.
 When it was finished, we moved to our home for the next 24 hours. There was a nice double bed for Mia to sleep in and a not so nice hospital bed for this mama to sleep in.
They wanted her to stay in her bed as much as possible. There was a video camera in the room to capture her every move while she was asleep and awake. The point of the study was to try and capture seizure activity, so that we can learn more about the types of seizures she is having. This way we can treat them accordingly. So, how did I keep my active 3 year old happy for 24 hours in a bed?  Lots of toys, puzzles, stickers, and quiet activities.
She also took 2 long naps while we were there.

The lab tech, told her that the cap she was wearing was her princess hat. Of course it was really just tape and guaze to keep the wires in place. It did bother her some, but I kept telling her how pretty she was in her princess hat.
She ate all of her meals and lots of snacks. We could not bring any electronic devices at all including cell phones, because it could interfere with the testing. There was a tv in the room. She watched a little tv, but she really has no interest in it, so I had to be creative and entertain her most of the time.
We were so happy when Daddy came by for a little visit on Friday morning. He brought us new snacks and toys. It was perfect, because we had eaten all of our snacks and played with every toy in my big bag by this point.
The princess did really well and she was happy most of the time we were there. The part she hated the most was taking everything off of her head. She was just so tired of being there and being still. We were both so excited when it was time to go home.

We have an appointment next week with the neurologist to discuss the results of the test. I am praying we get some answers. For now, I am just thankful for how well she is doing in our family. She is attached to us, she is thriving, growing, and developing in all areas. God truly has His hand on our sweet girl. We continue to give Him all the glory for the good things He has done and is doing in her life.

Monday, July 16, 2012

4 Months and 10 Years

 I really wanted to post an update every month, but this month I am very behind. Mia Grace has been home for a little more than 4 months now. We call her Mia or Mia Grace, but she is starting to refer to herself as Mia Grace. She continues to fill our lives with so much joy.  I just love this picture below, because it shows how she looks so much of the time. She loves life and she loves being part of a family. We are so glad God chose her to be a part of ours.
 She learned to ride a tricycle this month! She can ride her big wheel at home and the tricycle during physical therapy. She continues to amaze us with how far she has come physically. She can do just about anything she sets her mind to.
 In some ways she is growing up so fast and in other ways she is still our little baby. I let her play with her Ethiopian doll last week. She was so excited that the doll had hair like hers. The first thing she did was get her spray bottle, so she could fix her dolls' hair. Then when I wasn't looking she added some oil to the hair. It was super cute, but we put the doll back on the shelf.
 She loves to read books. When she first came home she really wouldn't tolerate me reading to her. I was lucky if I could get through a baby board book. Now every time I read she asks for, "one more." She and her brothers participated in the summer reading program at our library. We try to visit the library at least once a week.
 Mia continues to be my little shadow. She watches and imitates almost everything I do. She likes to help me do laundry, get ready for my day, and cook. Sawyer, my 6 year old, took this picture of us making chocolate chip cookies.
 She loves sweets! She really is a good little eater. Her favorite foods are pizza, ice cream, yogurt, roast, crackers, and french fries.
 Last month we took Mia off of her seizure medication completely. I was really hoping that I could write that she was still seizure free. Unfortunately, she had a seizure last week. It happened while she was asleep and we are not sure if it is the first time it has happened. It didn't last long and she is fine. It just shook us up a little bit. She is now on a new medication and seems to be tolerating it well.  She will also have to have some more tests run soon. I am praying we can get some answers, so that we can get her on the the best treatment plan for her.

Last week was crazy with unexpected illness and doctor appointments. It was a long week! Thankfully, I ended the week by celebrating ten years of marriage with Justin. We were able to go out just the two of us the week before last. Then on Saturday Justin took Mia Grace and I both out to celebrate. I am so thankful God put this amazing man in my life. He is a wonderful husband and father.
 Sweet Mia loved having all of our attention at the Hibachi restaurant. She had her first taste of sushi and seemed to like it.
 I loved spending the evening with two of my favorite people!
I am excited to see what the next 4 months and the next 10 years bring.

Friday, July 6, 2012

Mia's First Fourth of July

This week we celebrated Mia's first 4th of July as a US citizen. I happen to think she looks super cute in red, white, and blue.
 The kids all dressed up for church last Sunday. It is almost impossible to get a picture of the 3 of them where Jax is not kissing Mia. He sure does love his sister!

Wednesday morning we all headed down to my parents' house to celebrate the 4th of July and visit for a few days.
 I didn't get any pics of the 3 kids together, because the boys hit the pool as soon as we arrived. We had fun swimming, grilling out, and doing a few fireworks. Mia was a fan of the sparklers.

 We are enjoying our family time this week!

Sunday, July 1, 2012

Master of Disguise

 My friend sent me some pictures she took with her phone when they came over for dinner one night. I just had to laugh at my silly middle child as I looked through these pics. He has on a different outfit in almost all of the pics. During the summer he changes clothes about five times a day. He usually gets dressed in the morning and changes into a costume shortly after. He always has to pick out what he wears and doesn't usually approve of my selections.

He started the evening in his swimsuit at all the kids played outside in the sprinkler and little pool. Here are 5 of the 6 kids going for a ride in the F150.
 Then he switched to his Mario Costume for the water ballon toss.
 Then it was time to come in to cool off with a little bit of Just Dance on the Wii. Most of the kids put on pajamas, but Jax opted for his spiderman costume. Why not??
 This boy cracks me up. He would live in a costume if I let him. On Father's Day I wanted to get a
picture of all 3 kids with Justin after church. Before I could stop him, he had changed out of his church clothes and into his Incredibles costume. He wore this the rest of the day.

My little middle boy is definitely a one of a kind. A few weeks ago we were talking about riding in an airplane. I told Jax that he rode in an airplane when he was a baby, but I was sure he didn't remember it. He replied, " I know I had to ride in an airplane when you adopted me from Ethiopia." I almost laughed out loud. I told him that he wasn't adopted from Ethiopia. I know I have told him before that he came from my tummy, but I guess he just figured all kids must come from Ethiopia.