Monday, March 28, 2011

Lizzy is doing great!  They finished running all the tests they needed to last week and determined that she did have the artery condition that they thought she did. (Fibromuscular Dysplasia) Her case is exceedingly rare - the neurologists have only been able to find 13 cases like hers in the research - from the entire world. Thus, they aren't sure whether they will try to correct the problem or not. For now, she is just on a baby aspirin a day.

 We have moved to the rehab floor and are working on therapy full time now.  She is able to stand while holding on to something for balance, she can move her leg some and as of the end of last week, can even walk a short distance with the support of a walker and a therapist.  She is smiling and being incredibly silly!  Her arm has more feeling in it (one of the main nerves has woken up) but it is not complete yet. Her arm did move on it's own briefly last week as a result of shock therapy, but she can't control any movement yet. The arm is one of the last things to respond, so this is not unexpected. 

Her feeding tube was removed at the end of the week and she can now eat regular food - she loves this, especially after a week of no food, and then a week of IV feedings. We are thrilled! 

Her speech is much improved and we can understand everything she says now. She doesn't use all the huge words she used to very often, but occasionally she throws one in.  She is very bored, especially on weekends when there is little or no therapy going on.

She appreciates the many gifts, cards, and visits from so many of you. They really lift her spirits. We are learning the hospital routine and expect to be here for a few more weeks. We are so grateful for  how far she has come already and look forward to seeing additional progress. The good thing about a stroke is that every day does seem to get better, so there is always good news.  She is anxious to come home and asked if she "couldn't get a pass to go home for a little while and then come back?"  Not sure about that, but she does miss you all. Again, we are so very grateful for the support of so many. We never knew how many friends we had. Thank you so much for your thoughts, prayers, and all you have done for Lizzy and for our family. Please keep the prayers coming as they are making a great difference. On to victory . . . life at home! Thank you -Tom and Julie and Lizzy too.

Wednesday, March 23, 2011

Lizzy has been moved to a new room on the Rehab floor - hooray. Because many of you have asked about visits, we thought it might be helpful for you to know her schedule. She know has a daily itinerary of various therapies and school.  She is generally busy from 8am to 3 or 4 pm during the week. A good time to visit is after 5 when she is rested and generally a bit happier after all her hard work. Saturdays I think end earlier, perhaps about nnon - although I am not totally sure yet. Sundays are free days for her.  If you want to visit and have a chance, please email Tom or I so we know you are coming and can let Lizzy know. She gets very excited about visitors - they make her day. It really gives her something to look forward to.  A shorter visit - about 45 minutes is probably best for most since it doesn't tire her too much. Thank you all for your support, thoughts and prayers. We are so grateful. Julie

Sunday, March 20, 2011

Tom and I have decided that it might be easiest to just send an occasional update to a few people for them to forward on, since the groups are probably already set up and so we don't have to try to collect emails. I hope you don't mind forwarding this, if that doesn't work for you, just let us know. Thank you.

Lizzy has improved so much this week. On Monday night, when she collapsed, she was completely paralyzed on her right side, had slurred speech, and was incoherent.  Today she can transfer from the bed to wheelchair with a great deal of help, speak in a complete sentences, understands some jokes, and was even doing a few times tables.  She has smiled a lot today and sang a funny song that she was singing last week. She has no memory of the event at all, but she does know where she is, who we are, and pretty much everything up to last Monday.  The doctors have almost determined that the cause of the stroke was due to a genetic condition (don't know which side yet, I guess we will test for that later) that causes her arteries to fail. The carotid artery going into her brain on her left side shows this bubbly condition called Fibramuscular dyspasia (really don't think I spelled that right) that caused the stroke. She also has blood with a high clotting factor that contributed to the problem.  She will have another MRI tomorrow and another CT scan and another ultrasound to check conditions and make sure nothing has worsened. The will also be looking at the other arteries in her body to see if the condition is present elsewhere. In addition, her brain scans are being looked at by other doctors around the country to make sure they are in agreement on this condition. We are unsure of treatment for the condition at this time, but hope to have answers next week after her tests come back and we meet with the neurology team again.  The stroke was severe, it affected about 30% of the middle section of her brain. Other parts of her brain are "covering" for the parts that were lost, however, and the chance that this will continue and that she will be able to resume her life is good. Physical therapy expects her to be able to walk again, but the use of her right arm is still somewhat in question. Children generally respond well to strokes and make great strides. Cognitively she should improve as well, but of course we don't know how fast. She will move up to the physical therapy floor as soon as she is off a feeding tube, which we expect will be this week. We expect to be here about a month or so for therapy, but it could be longer or shorter than that depending on her progress.

We really want to thank you all so very, very much for all that has been done for Lizzy and our family. We have felt so loved and supported by everyone. The many, many cards, emails, meals, gas cards, gifts, help with the kids, and especially the prayers have helped so much. She has cards, posters, flowers, pictures and gifts covering her room. We re-read her many cards on a daily basis to give her strength (today she read them by herself!) She has literally hundreds of people around the globe praying for her, many that we don't even know.  Thank you so much.

The e-card messages from the hospital website have really helped her, she has got a few new ones every day and she loves this. If you would like to, you can send one by going to the hospital's website at  http://www.childrensmercy.org/patientcards/ You just pick a card style and type a message and they print it here and deliver it to her.

We will try to send an update once a week or so. Thank you all again for everything and for the many offers of help. When we get back in town, we might take you all up on it! Keep those prayers a'coming - Tom, Julie, and Lizzy Smith