Ellie

So I think I will start at the beginning, mostly so I have a record of her progress. The last five days have been such a whirlwind and we are just starting to have a chance to catch our breath. If you have been getting sporatic updates I apologize for the repetition, but hopefully this will get you up to speed on Ellie's ordeal and I will do my best to continue to update her progress as often as possible. This is gonna be a long one...

Saturday night Ellie woke up around 11:30pm with what we thought was a night terror. She was crying and we couldn't calm her down and she wouldn't tell us what was wrong. Tim was able to get her to go back to sleep after about 15 minutes. She didn't wake up until 9am. When she did wake up, she didn't call for me like normal, I heard her kicking her bed. I went upstairs to get her and she got out of her bed and we picked out a dress for church. I started to notice something wasn't right when she was walking down the stairs and kicked one of Ethan's toys that I had put on the step to take upstairs. It was like she lost her balance. Once she got downstairs we started asking her what she wanted for breakfast and she wasn't answering us. I gave her some options and eventually she agreed on toast and peanut butter. She was talking to us some, but not as much as normal. Also, when I handed her a whole strawberry she tried to eat it stem first (this might not sound odd, but this is something that Ellie had never done, so it was strange for us). She just seemed so disoriented. When she sat down to eat her breakfast, I noticed that she wasn't using her right hand. By this time, Tim was already on the phone with our pediatrician. I was trying to get her to eat some strawberries with her right hand and she would drop them before they made it to her mouth. Tim described it to the pediatrician on call as a change in mental status. I am so thankful that he was home and that he was a paramedic and he knew how to describe what was happening to Ellie. Basically the pediatrician on call told us to get to the ER as soon as we could, so we threw some clothes on the kids and jumped in the car. It took us about 25 minutes to get to the hospital (again, thankfully it was the weekend and we weren't stuck in traffic - the drive to the hospital could easily have taken 2 hours on a weekday) During the drive Ellie began to talk to us less and less until she wasn't speaking at all when we arrived at the hospital. Once we got there, the ER staff took us in right away. The nurse came in and started asking us to describe what had happened while they started to take her vitals. They decided to do a CT scan of her head to see what might be wrong. The doctor came in and started talking to Tim so I decided to go outside and get the stroller for Ethan so I wouldn't have to hold him and we could move around more easily. I also called my mom and told her she should probably get on the road. When I returned to the room Tim told me the results of the scan, Ellie had suffered from a stroke in the left side of her brain. At this point we were both in shock. The doctors couldn't tell us much more and started to order more tests. We barely had time to gather our thoughts and they were sending her out for an MRI. This was probably the worst part of the day. They had to take her to surgery and intubate her so they could give her anestesia for the MRI. We were able to stay with her for a minute while they gave her the drug that would calm her before the intubation. This was pretty painful for her so needless to say we were pretty upset. We had to go the the waiting room while they preformed the MRI. It was the longest half hour of our lives! The nurse came to get us and took us to the Pediatric Intensive Care Unit (PICU). We were able to see her, but had to go in one at a time because we still had Ethan with us and he wasn't allowed in the PICU. Tim went in first to talk to the doctors. They confirmed the stroke, but said they couldn't see everything that they needed to see, so they ordered a second MRI for Monday morning.

My mom arrived at the hospital around 7:30pm and she and Tim took Ethan home. Mom stayed with Ethan that night and Tim brought some things back to the hospital for us. They needed to take a lot of blood to run tests (in fact, the nurse said she had never printed so many test labels) they wanted to check to see if the stroke could have been caused by a metabolic disorder or if it could have been caused by a problem with her blood - like difficulty clotting. The poor girl had to have the blood taken from the artery in her groin. They tried her wrists first but couldn't get enough blood - she still has bruises! We are still awaiting some of the test results, but so far the ones that have been completed have all come back normal. We were told that there is a 30-40% chance that they may never know the cause.

Tim and I spent Sunday night at the hospital with Ellie. We didn't sleep much. She was pretty exhausted and did get some sleep, but was pretty uncomfortable with the wires and such that were attached to her to keep track of her vitals. She wasn't able to talk to us much more than yes or no if we asked her specific questions. They let her eat and drink a bit, but since she had to have a second MRI on Monday, they wouldn't allow her to have anything after midnight. They put her in a diaper, but we knew that she wouldn't use it. She has been potty-trained since December and has had so few accidents. She started fussing and Tim asked her if she had to go to the bathroom - she said yes, but we were a bit discouraged that she couldn't tell us she had to go.

There wasn't much change Monday morning. We just held her and waited until they took her down for the second MRI. This test they wanted to do with a contrast (a dye that they inject to look at the brain) and also wanted to look at the arteries in her neck. They used a much less evasive form of anestesia this time and she didn't need to be intubated. While she was getting the MRI, I went home to feed Ethan, drop off some milk for him and and pick up some more familiar things from home for Ellie. By the time I returned, she was talking some more. She actually said a few words to me without being prompted! Our new pastor had also come by to see us - it was great to have him there with Tim so he wasn't alone. The second MRI didn't reveal much more than the first. It did show a small cyst in the same area as was affected by the stroke. The neurologists don't believe that they are related, but will keep an eye on it and will preform another MRI in 3-6 months.

Since she was slowly improving, they decided to move us from the PICU to a room in the Intermediate Care Unit. This was on Monday afternoon. Around this same time Tim's mom arrived and my brother and his girlfriend came to see us. It was great to see Ellie recognize them and talk with them a little. She was still only talking when prompted. Once they told us she was allowed to eat and drink again she began asking for food! Later that evening she also told me that she had to pee! It was music to my ears! She was slowly regaining her ability to have her needs met.

I spent Monday night with her and sent Tim home to sleep. Since Ethan still isn't sleeping through the night I am used to little sleep and thought I would do fine in the hospital again. I probably would have too, except that Ellie's poor little roomate had broken her leg and was in a huge amount of pain and cried most of the night. Thankfully Ellie slept through most of it.

Tim and his Mom came back at 11am on Tuesday morning and I was able to go back home and feed Ethan (we really missed each other, but he was such a trooper for Nana!), have some lunch and take a shower. Ellie had a consultation with the occupational therapist who began to work on some fine motor activities with her and sent us home with some ideas as well. When I got back to the hospital that evening Ellie was up walking! She was very wobbly, but was able to walk with some assistance (as long and she faced forward, if she turned while walking she would lose her balance). It seemed as though she was improving so quickly.

Mom was so wonderful and offered to spend Tuesday night with her - what a blessing. I got to put Ethan to bed that night and get a good night's sleep. Tim went back to work on Wednesday and Deb and I headed to the hospital first thing in the morning (after sitting in traffic for an hour and a half that is). Ellie had a great night and slept really well. Her talking had improved some and she was saying short sentences. Mostly when she wanted something, but occasionally without being prompted. She was able to spend most of the morning in the playroom - she wanted to climb on the mats most, her ability to move her right arm and leg had almost completely returned. She was still favoring her left hand, but was staring to use the right more.

They had been talking about discharging us that afternoon, but we weren't holding our breath (you know how hospitals are). When the nurse came in to take her IV out at 3:00 and told us we could go home, mom and I got the kids packed up and got out of there so fast we felt like we were kidnapping Ellie!

Currently, they have Ellie on an aspirin regimine. She takes 1/2 of an 81 mg aspirin every day. We are scheduled to see a pediatric stroke specialist next Wednesday morning at Children's National Hospital in DC. We are hoping that she can shed some light on this and give us a plan for treatment and therapy. Right now we are waiting for a speech therapy consultation as this seems to be the slowest area of recovery for Ellie. We are also planning on scheduling occupational therapy to help her regain the use of her right hand. She started using it more today and we think this will only continue to improve over time.

We have been so blessed by a supportive family and friends. We had many visits from our new church family and we have only known them for a few short weeks. We know that Ellie has been on prayer lists up and down the east coast since Sunday night. We are so thankful for all of the positive thoughts and prayers - we know they are instrumental in her recovery. We hope that you will continue to pray for her as she continues to recover. There is no way to now just how long it may take for her to fully regain her speech and her motor skills. We have hope that she will with time - if you know Ellie you know that she is a fighter and has a strong spirit and won't let anyone tell her she can't do something! We also hope that you will continue to pray for Tim and I as well. We are still trying to take this all in and it has been difficult to watch our baby suffer and not be able to make her feel better.

We thank you again for your love and support these last few days, you don't know how much we appreciate it. We plan to take it easy the next few days and just let Ellie get used to being at home before she is bombarded with who knows how many therapy and doctor appointments. I will continue to report on her progress and hope to report more good news soon!