Day 1 of Phase 1

So we arrived at Miami Children's Hospital at 7 am to check in and have an MRI. We went in and did all of the paperwork, took vitals, and sat in the waiting room. After a while we were informed that the MRI was broken. They had ordered a part and were waiting on it to be delivered. Should be 10 when it is fixed... Little ones who can not hold still on there own, have to be sedated, which means no food for 6 hrs. Now try to explain to a 5 mo old "mommy can't feed you yet..." They went ahead and took us to a room on the floor we would be staying on. Dr's and Nurses came in and took more info, and set us all up. Then we were told the machine would be fixed around 12. It was a pretty rough morning, but the nurse practitioner told our nurse to start her IV, so they took her in and got that going. I was not in the room, but Kari told me that they only stuck her once. The picture above is for Olivet and Ivy, her IV is held in place with a princess. Once they were done with the IV, Avangeline was very tired, she fell asleep. So I decided we would hold out for the MRI, the Dr was ready to reschedule for tomorrow. They finally came to get her and long story short she left us for the scan at 2. Then while she was being scanned we were moved to a different room, and ate some lunch.

The scan took forever!!! I was not able to see her till 5:30. While she was still groggy from the sedation the EEG tech started putting leads on her head. She is hooked up to a EEG machine, that is reading her waves, and is being videoed. We have to push a button any time she has a seizure. This is the hat that is holding all of her leads out of the way. Kari thinks she looks like a Vegas show girl. With all of her other EEG's they just stick the leads on with gel, then pull them off. These a glued on, with stuff that smelled like model glue. I would like to know how many weeks it will take to get it all off... She is now sleeping. Tomorrow we will be having a SPECT. (Google it, I can't explain). Pray that we do not have a repeat of today with the waiting game as she will not be able to eat again until it is complete.

On our way!!!

As we left Topeka we saw firetrucks on all of the overpasses on I70, then on the last one before the turnpike there was a flag flying. So I had to know what was going on so I called Pam, she has a way of knowing what is going on all of the time, well turned out she did not know but Joe had the info. There is a group of veterans traveling across the US, they started in Washington DC. I didn't catch where they were headed. So no sooner than I had gotten the info on what was going on, we came up on all of these bikes, hundreds of them! It was quite a sight. And one of those goose bump moments. So all the way until we got off of I70 in KC, there were people on the overpasses to cheer them on. Pretty cool...

Our trip went a lot smoother than I ever expected. Avangeline did really well. We had a lay over in Chicago, but it went by really fast. The flight into Miami was long and Avangeling was done being a good traveler. So she cried for the last 20 min of the flight. Then she cried for the hr and a half it took to get luggage, and to the hospital. She was pretty worked up and so I took a shower with her to calm her down. It worked really well, and she passed out shortly after we got out. She slept all night. I wish I would have...

Happy Mothers Day!!!

What a wonderful day it was! All of the kids made me cards, and Jason made me breakfast, so that started the day off right. Church service was nice, and Avangeline slept most of the time we were there, in the nursery, so I did not have to worry about her. After church we went to Moms house to eat lunch. On the way over Avangeline talked to us, she cooed and giggled and made lots of happy noises. It has been weeks since she has smiled and talked to us. Jason stopped at Sonic to get us drinks and I crawled over the seats to get a look at her, it was the best mothers day gift she could have given me to be able to see her smile. We talked to her and enjoyed the moment. Just like Mary in the sermon, I will treasure up that time in my heart.
After lunch with mom we went home and took naps. Then we headed over to Jason's mom's house to wish her a happy day. The kids played out in the yard and enjoyed the beautiful day.

Avangeline had a very good seizure day, she was very fussy most of the day but she was also gassy. By 6pm I was convinced that she was not going to have any spasms. But around 7 she had a good little cluster. Ezra happened to be holding her, he asked lots of questions later that evening, so this became very real for him. I asked him if it scared him and he just looked at me and said "No, I prayed." Wow! How's that for a reminder of who we need to rely on? Although Avangeline was difficult to deal with, we only had the one cluster of spasms. Praise the Lord!!! It has been a long time since she had a day this good.

We will see what today brings...

Tea Time

Today was the mother daughter tea at our church. Mom and I have attended this event together for several years. It is always such a nice time that I have been inviting Pam for the last 3 years (I think that's right, Pam?). Pam is our daycare provider and is a very important part of our family. Jason's mom and Grandma also attended for the 2nd yr in a row. Today the tables were set with beautiful tea cups, and the girls just loved them. I filled them with juice and they enjoyed drinking from them. Olivet talked about it all evening. There were 2 speakers and music. The speakers were wonderful, such awesome messages to lift up all of the women of the church. Robin shared Deuteronomy 6:1-9, and spoke of our responsibility as mothers to make God a priority in our homes. God is so evident in our home these days, as I do not know how we could get through this time without him. And so the message today was very fitting.

Avangeline had a really bad night last night. We were up a lot! Poor thing just can't relax, I finally decided this morning at tea that something had to be wrong. As were were getting ready to leave the church I was changing her diaper and I looked in her mouth and she has Thrush, again... So no wonder why she has been so mad. Mom offered to take the girls home so I went straight to the prompt care up by our house, and got her a prescription. She is already feeling better after one dose. Her spasms seem to be getting stronger and more frequent. Although she is resting quite peacefully right now on daddy chest. So it may just be that when she gets really upset they set off, and now that her mouth feels better she is not upset. At any rate the 19th can not get here any faster! We are so anxious to go, and we pray that there are some answers waiting for us there. I want my baby back! I have received all of the information from the hospital on what will be going on, sounds like a full gamut of tests, so it will not be dull. With her being so small, and not able to hold still, she will be sedated for most of them. This is not something I look forward to but we will do what we have to do to get her well.

Keep praying, and thank you. We love you all!

Where has the last month gone?

Wow it has been quite a while... Things at our house are crazy so there is not much time for anything extra. I am going to try to keep everyone posted as to what is going on with us, it is becoming more and more apparent just how many prayers are being said for us that I want you all to know what it is that is happening.
Avangeline has "infantile spasms". Go ahead and Google because it is way to hard for me to describe. I had avoided the Internet for a long time because everything is so scary, and worse case type stuff. But now this is my reality. I did not want to admit that this was what my daughter had, and for a while in the beginning I think we even had the Dr convinced that this was not the case.
Avangeline has 30-40 spasms (seizures) per day. Most are focused around her sleep, when she is trying to sleep or waking up. Once she gets to sleep she is fine, it is just getting that way that is sometimes a challenge. Also if she gets really upset that can set her off. We don't know if the fact that she is upset sets them off or if she is upset because she is having spasms...
We have tried so many different meds that our Dr wants us to go to get a specialist opinion. So the week of May 19 we are going to be at Miami Children's Hospital. They have very sophisticated equipment, and are one of the best hospitals in the world for neurology stuff.
We appreciate all of your prayers. Every time I turn around there is someone else praying for her. Please continue to lift her up. Pray that travel will be easy, that Jason and the kids will be ok with out mom around, and that the Dr could find a way to relieve our little girl of these spasms.