February 9, 2005
Hello everyone, and welcome to the new members of this list. Sarah has been doing well with eating since the swallow study. She is eating an ounce or two a day of food, and her favorites are baby food beef, Hawaiian Delight, and chocolate pudding.
Yesterday we had an extended EEG at Cardinal Glennon and found that Sarah is in fact having small seizures like we suspected (but hoped we were wrong). We are going to increase one of her medicines and see if that helps. The new seizures are staring type seizures, and are not dangerous like the long ones she was having before.
Attached is the picture I promised earlier of Sarah in a crawling position - the only assistance she is getting is with her left arm (I am NOT touching her).
January 24, 2005
Sarah passed her swallow study today and is now going to start eating by mouth!!!! Praise God!!!!
Here she is getting ready for the test. It was a video x-ray so that you can see how she chews and swallows each bite.
January 7, 2005
Sorry it has been so long! We got home from Bolingbrook on December 14th. Sarah was extra tired for several days, which we wrote off to the change in routine & the trip. But then we realized she was getting sick. A week after we got home, we found ourselves at Cardinal Glennon with Sarah having pneumonia. We went home at 5pm Christmas Eve, only to turn right around and go back via ambulance at 9pm. Sarah was very sick this time, and the PICU doctor even had to come down to the ER to help stabilize her because it was not safe to move her. Later that night we moved to the PICU, where Dave spent the entire night at Sarah's side while I slept a little in order to take the next shift. We spent Christmas day and Sunday in the PICU, then a regular room Monday and Tuesday, then back home.
Our parting gift was an intestinal infection that you only catch in the hospital, and Sarah had to start on medicine that made her very sick to her stomach. There are only 2 antibiotics that this very resistant bug responds to. After almost 4 days of giving her one of these medicines, she starting throwing up and crying like I have not heard her cry in 9 months. This was both good and bad - it was so amazing to hear her full voice and "regular" strong cry. So the pediatrician said to stop the medicine, and bring in a sample to see if maybe the bug was gone. We are waiting for the results. In the meantime, I picked up the other drug that can treat this bug & have it in the fridge ready to go. It has big side effects too, so it would be great if we do not have to give it.
Sarah has had two Healing Touch sessions with Janet Neal, the second of which I truly wonder if it didn't heal the intestinal infection. Since that session, all of Sarah's symptoms of the infection went away, and today she had the best day she has had since we have been home from Bolingbrook. If the results of the culture are positive, I am going to ask for another test because the Healing Touch session was after we took the sample to the doctor's office. I did not know about Healing Touch before Janet contacted us and offered to do this for Sarah. I was concerned and skeptical at first, because it is a spiritual treatment, and one, I did not know if it was for real, and two, if it was for real, if it was safe. I emailed Janet about my concerns, and found out she is Christian, actually Roman Catholic, and she is a former Barnes Jewish Hospital nurse. I also read about it on the web, and decided to give it a try. It is very interesting - Sarah has become totally relaxed and fallen asleep both times. After the first session Sarah's strong cry returned, and after the second, I want to say her infection disappeared. Janet says we will be amazed what happens. We'll see how this all goes. It is certainly very intriguing. Here is a website about it http://www.healingtouch.net
Sarah is just getting back into her regular therapy schedule. Sarah/s PMA, (Personal Medical Assistant) Karey Kaemmerer, brought over one of those bouncy seats you hang from the door frame that belongs to her little girl, and we put Sarah in it today. With her therapy vest on, she sat up and held her head up and smiled as we bounced her for a good 5 minutes! So Karey has come up with a "therapy" that we will be repeating - Sarah really liked it!
We had our family Christmas morning on New Years morning, and did not get our tree up until New Years Eve, so it is still up. We are thankful to be in 2005 now. We didn't care for 2004 overall, and although a lot of beautiful things happened, I'd still send it back if I could.
Since Sarah has been sick, it is hard to quantify the progress we might attribute to HBOT since we've been home. We did see accelerated progress the last 2-3 weeks in Bolingbrook, but we are likely to see more accelerated progress over the next few weeks. Now that she's feeing better, it will be easier to tell. She does seem different this week - it is so subtle that all I can say is she seems more aware. She is verbalizing more, and we have heard "Ah-rah" several times now when we have asked her to say her name.
We are continuing doing everything we can to facilitate Sarah's recovery. There are three other therapies we are looking into - aquatic therapy, lite gait (treadmill), and horseback therapy. They all look very promising. There is a lot going on in the field of brain injury recovery - there are a lot of approaches, and we are looking for the ones that benefit Sarah the most. Her swallow test has been rescheduled for January 24th due to her illness - we are still so excited about this.
God Bless all of you, and thanks for reading this big long message. Best wishes to you and your family for a wonderful new year!
We completed HBOT number 14 on Friday. By the time we come home next weekend we will be almost exactly half way done with 40. It really is going by fast, as has this whole year.
Sarah and I went to the Brookfield Zoo today and had a very nice time. One of the big hits with Sarah were the fish - they have a nice well lit exhibit - and we also went to the Dolphin show. She got to pet a baby chick and a guinea pig, and I'm pretty sure she was able to see one of the elephants and 2 cows. A lot of the outdoor exhibits are made of colors that blend in with the animals, so I don't think she was able to see those too well. We had beautiful weather. We only saw about half of the zoo in our 3 hour visit - if we get another nice day I would maybe like to take her back.
Some of you know that I got a huge smile from Sarah early in the week by playing the Musicgarten CD for her from the class we were taking in the spring. I helped her do the actions - I really think she remembered the songs. I haven't seen any music make her this happy except for Miss Mary Mack.
Sarah rolled over by herself last week - with the help of gravity (she was laying on a giant wedge) and a special therapy suit. She also has been seemingly consistently using the sign for "more" - I hope I am interpreting this right - it really does seem for real at times.
Dave ordered a digital camera for us - so before too long I will be able to attach some pictures to these updates. I am really looking forward to that.
Take care of yourselves, and God Bless you.
39 hyperbaric treatments done, one to go! We will be heading home tomorrow (Tuesday)! Dave and my dad are on their way up here as I write. We meet with the doctors at 10am, including Dr. Harch who is coincidentally in town from New Orleans the day of our last treatment. Then at 11am, we dive for the 40th time, then come back and pack up the cars and head home! YAY!!!!!!!!
Thank you all for keeping in touch while we have been away and we are looking forward to seeing everyone! Sarah is doing well. Her progress has accelerated the past 2 weeks or so. We are hoping to see even more of this in the next several weeks.
Please keep her in your thoughts on Dec. 21st - she will be undergoing a test at Cardinal Glennon that morning to determine if she is ready to start eating by mouth. Everyone thinks she is - her therapists in St. Louis and the ones up here, but we still have to do the test. If all goes well, she will be eating with us on Christmas Day! I hope! Just to clarify - even if we get the green light, she will only be eating small amounts at first and will still be tube fed. But we have high hopes for this.
God Bless you all & take care!