Saturday, March 28, 2009

A Red Balloon for Jordan...

We released red balloons tonight at 7:30pm CST (5:30pm PST) in memory of Jordan Rowe...

Reposted from The Rowes in the Rose City...

One of the joys of Jordan's life were red balloons. She'd hold them in her hand & bounce them up and down, training her eyes to follow the dance of the red balloon.
Tomorrow evening at 5:30pm, at the end of our after-service gathering, we would like to invite you to join us in releasing a red balloon for Jordan (from your home if you won't be joining us at the gathering). Please feel free to attach a little note to Jordan to the balloon before you release it. We'd also love it if you could take a photograph of your balloon release and forward it on to us, if you are able to do that.

Monday, March 23, 2009

I once had the privilege of meeting a beautiful baby girl named Jordan. Through my Infantile Spasms support group, I met a mother who was also traveling to Detroit for the first time for the full work up requested by Dr. Chugani. Jordan was about 9 months and Sophie was about 11 months. We met in the airport and my heart immediately went out to her brave mother, Leslie, who had traveled alone with her daughter halfway across the country to try to find some answers. She was determined to find out as much as she could about her daughter's condition and to give her the best medical care possible.

Little did I know that the amazement I saw in this mother was only a fraction of what Leslie and the rest of her family did for this sweet little girl. Unfortunately, her original blog was deleted or else you would be able to read and see for yourself as I can not give the things they did with this beautiful little girl justice. But one memory stands out...the beautiful pictures they took of their hikes through mountains with Jordan in a backpack carrier. They loved her with all their heart and she was as much as part of their family as any little girl could be.

With a heavy heart, I must say that they had to say goodbye to their sweet little girl this morning. I pray for peace in their hearts as they travel through this sad journey.

Reposted from Leslie's blog...

Jordan didn't wake up this morning. She passed peacefully in her sleep sometime between midnight & 04:30am. She was right there with us, yet made no plea for help, no gasps for breath, no cries of pain. She just slipped away. Quite unexpectedly. She was almost back to "normal" from her illness of the last few weeks, and was going to go to school today for the first time in over a week. Unfortunately for us, though, it was her time to go. We are shocked and devastated. Devastated. We will let you know when arrangements have been made for her memorial service.

Leslie, Devon, Avery, & Birkeley

Thursday, March 19, 2009

5 Star Treatment...

Never would I have ever imagined that things would go as smoothly as they did...even with a little mishap along the way.

First of all, we were able to do the EEG locally. There was no worrying about plane trips or places to stay. The hospital, St. Louis Children's Hospital, is only 20 minutes from our house. I, of course, still overpacked and worried myself crazy the night before.

I was immediately impressed when we walked into our room. It was a private, spacious and well lit room...the nicest hospital room we have ever stayed in by far. We even had a view as we could see the Gateway Arch. Everyone we met was so incredibly nice...the nurses, EEG technician, in-house pediatrician, epileptologist, etc. I was amazed at having so many people check in on us.

But the best part has yet to come...for all of you who have been through a 24 hour video EEG or longer you will appreciate this. In the ceiling, there was a little dome with a camera in it. In another room, there was a technician who monitored the camera and EEG reading at all times. This allowed Sophie to move freely about the ENTIRE ROOM!!! The cord was so long that she was even able to step right outside the room. She was given a backpack to wear to hold the box that all the wires were attached to. At every other hospital, we were confined to the bed or one foot beside the bed in order to stay within camera view. No one ever checked in on us. If a lead came loose on Sophie's head, we had to notice it on the EEG reading and notify someone. There was no backpack so we had to constantly be hunched over Sophie so that every time she moved one of the wires didn't pop out of the box.

The following morning, the epileptologist reviewed the EEG and then spent at least 20 minutes explaining everything to us and answered all of our questions. She seemed to genuinely care and took the time to review Sophie's previous MRI and PETscan. Which amazed me since Sophie is not her patient nor is she a patient of a doctor at this hospital. They took a complete history of Sophie including every treatment she has ever tried. The epileptologist recommended trying felbatol and explained all the risk and side effects to us.

Our one minor mishap... Sophie loves to throw her body around like crazy. She thinks it is funny. She gets in these moods and becomes a complete wet noodle. It is completely on purpose because she only does it when she is in a really silly mood. So as I was waiting at the elevators to head down to the cafeteria the second morning we were there, I heard a loud scream. I just knew it was Sophie. So I headed back to the room (which is around a corner, down a hall and around another corner...that is how loud she was crying). When I walked in the room, Brandon was holding her and she was sobbing. He said that he was holding her hand and she just threw her body backwards and he heard a pop. So I held her, thinking that once she calmed down that she was going to be okay. Well, she refused to move that arm. I knew she had to be in a lot of pain because she has a very high pain threshold. Brandon got the nurse, who got the resident pediatrician, who then got the head pediatrician. She examined Sophie's arm, moved it around a bit while Sophie screamed her head off. She said that Sophie's elbow was popped out of socket and that she just popped it back in. She said that if she still wasn't moving it around within a few minutes that she would need x-rays. Well, within 5 minutes, Sophie was back to normal like nothing had ever happened.

Special thanks to Grandma Debbie for taking such great care of Elsa. She even brought her up to the hospital for a few hours which Sophie absolutely loved. It was calming to know that Elsa was in such great hands.

Special thanks also to Sophie's old ABA therapist, Jen. She came to visit us in the hospital and brought Sophie her favorite chips and a book. Sophie was excited to see her and even showed off some new words for her. Jen always had a way of getting Sophie to do things that no one else could.

Monday, March 16, 2009

Another EEG...

I'm anxious. Tired. Just feeling overall gloomy. In about 7 hours we will be leaving for the hospital for Sophie's 24 hour video EEG. I hate staying the night in the hospital. I hate the thought of being confined to a hospital room. I hate the thought of the tears that will be rolling down Sophie's face as the leads are put on her head.

It is going to be a gorgeous day tomorrow. And we are going to miss it. And it makes me mad. Then I think of Zoey and so many other children that have long extended hospital stays. I think of all the gorgeous days they miss. It is not fair.

But we are suppose to be grateful that there are hospitals for our children to go become well. And I am grateful. Just sometimes, there are so many more mixed emotions that go along with it. But, between all of Sophie's hospital visits and all the testing, nothing has made her better. She continues to have seizures everyday. We are now at 600mg of Banzel (we increased to 500mg last Wednesday and 600mg yesterday). Her seizures are not any better. Maybe even a little worse. They are longer. Lasting up to 10 seconds per seizure. But she does seem to have a bit more clarity when she is having a good moment. It doesn't make any sense.

It is hard for me to let go. To know that I have no control. I just try to do my best in getting Sophie the best medical treatment possible. But ultimately I must leave things up to Him. To enjoy all the great things that Sophie does do and not dwell on the medical issues. But it is hard. It is hard watching your child suffer.

So if anyone is in the area and has any desire to come by and say hi...we will be there...just give us a call on our cellphones. We will be counting down the minutes until we get to enjoy some of the gorgeous weather that has come our way.

Saturday, March 07, 2009

What a week...

Elsa woke up last Saturday morning with a 102.5 degree fever that just would not go away. I took her to the pediatrician on Tuesday and it turns out that she has a urinary tract infection. She is on antibiotics and finally started feeling better on Thursday night. But in the meantime, she was LITERALLY attached to my hip. Her feet did not hit the ground for days. She was not sleeping very well at night so I was up giving in to her every demand. And demanding she was!!! She is now being detoxed from being spoiled so much. It is not going so well.

On top of that, Sophie was not sleeping very well and was having more seizures than usual. We increased Banzel on Monday to 300mg (100mg in AM and 200mg in PM) and on Friday to 400mg (200mg 2x/day). She is doing much better now and her seizures have somewhat stabilized. Though, she was up at 5am in this morning and had a fairly large cluster of seizures. But she has been in a VERY happy mood ever since then. She was extremely loud and vocal today. The weather was absolutely gorgeous yesterday and today and we have been spending a lot of time outside. We have to take advantage of these days as they come and go this time of the year. (Heather...I think California is calling our name louder than ever).

On top of that, I am 5 months pregnant.

So it made for a very exhausting week.