07/11/04--Brandy has not had a very good week. She hasn't been feeling very well and seems to be struggling with tummy problems again. She has also been wretching a lot more. She has been doing a lot of wretching for quite a while and was on periactin for a few weeks which seemed to work at first, but now she is back to wretching several times an hour. This is heartbreaking and exhausting as she even wretches quite frequently through the night. This problem isn't new and it has come to be just part of life for us even though it is so sad to see our princess struggle like this. However, this week has been different. The constant wretching is making her feel miserable (at least we think that is what is causing her misery). In addition...Brandy has actually been vomitting from time to time. The doctors warned us that with a lot of wretching the chance of the stomach wrap (fundoplication) coming undone increases. We know that a lot of her problems can be attributed to the fundoplication, so we don't know if it would be better if that part of her surgery would just go ahead and come undone completely or not. If it did come undone then we may have to battle reflux and constant vomitting again with a possible surgery to repair the fundo. We certainly hope not. I am going to call the GI doctor tomorrow and see what she has to say. I will update when I know more.

07/05/04--Happy Independence Day! Brandy had a big day yesterday. We were gone most of the day visiting with relatives all around town. Brandy did very well all day long. She got tired around 9:00 p.m. and became a little cranky, but that was expected since her routine had been disrupted all day. She went to sleep quickly and slept very well most of the night. Unfortunately she missed all the fireworks. As far as things we have seen this week...Brandy is holding her head up for longer periods of time. Her development is at times EXTREMELY slow, and sometimes that is very discouraging for Wade and I. We would love to see some big, major improvements, and when things move slow we, at times, get very anxious. Please pray that we will not loose hope. More importantly please don't forget to pray that Brandy will improve daily and develop far beyond what Neurology expects that she will.

06/26/04--Brandy is doing well. She likes to play with her Zoe doll and stick her feet in the black box. She has started to grab things (mostly the hair of her Zoe). We have been working on building strength in her neck and trunk muscles, and she has begun to hold her head up for longer periods of time. She has started lifting her head off my shoulder and look around briefly. We are trying to help Brandy learn to roll over as well as play with her hands together. We have learned that Brandy is easily over-stimulated by being around too many people. She gets fussy and will bury her head in my shoulder and won't look around. Please continue in earnest prayer that God would make Brandy whole, taking away all the jerks and siezures and allow her brain to grow and develop in amazing ways.
Brandy has a new pediatrician, Dr. Orme. I think she is going to be a great person to have as part of our team. Brandy saw her for the first time this last week. She received her 6-month shots, so now we are finally up to date on those. Brandy weighed 15 pounds 13 ounces and was 27 1/4" tall.

06/17/04--I thought I would pass along some encouragement and let you know my thoughts. Many of you received the news of Brandy's MRI and Neurology report. I have had a while now to think about everything, and let me tell you I have done a lot of thinking, a lot of praying and a lot more crying. This news crushed my family and I completely. I have gone through a mourning process, and I suspect I will probably continue to mourn for a while. I mourn the loss of my precious child...the way she was, and I wasn't able to accept and embrace Brandy's new life until I allowed myself to mourn over what was gone. Now I rejoice in the new life she has. I desperately miss the way she was, but I am so excited about my little princess today and with every new day. Over this last week we have been blessed with many people sharing stories of hope...stories of their children. Two moms, in particular, have talked to me about their children's brain injuries and how the doctors said they would never do anything. But, their children are running and playing and enjoying life. Others have told us of children that have had serious illness or disability but the children were the happiest kids you could find. I have applied to become a part of a parent mentoring group for parents of special needs kids. This group partners up families dealing with similar situations to encourage, help and teach each other. This group also educates upcoming medical professionals by allowing families to go into classrooms and tell their stories and what medical personnel did to help and hurt their family. It is exciting to think about helping medical students learn and understand about caring for special needs kids as well as helping them to see how they can help as well as hurt a family. Despite Neurology's suggestion that she would never do anything more than what she was doing when we were at the doctor's office, which was nothing, Brandy is progressing. Her personality is growing, and it is so much fun to see how it is blossoming. I see things in her that say "this is me, this is who I am". She has an attitude and isn't afraid to make her self known. She doesn't cry very much (a great blessing) except when something isn't quite right. She looks at her toys and reaches out for them with a look of delight. She even made an expression of pride in what she had done when she stuck her foot in her black box. She "talks" her sweet little baby talk, and even though we haven't heard many different sounds I can see that she is starting to try to make different sounds. She "gripes" when she isn't pleased with something. She even has times when she would rather be left on the floor to play. Brandy is going to have a lot of things to overcome. It may take her a long to time to learn many of the things we take for granted like walking and talking. She is our princess, and I love her more and more every day. I consider it an honor that I am her mom and I am privileged to work with her as she works hard to overcome all that lays ahead of her. Brandy still needs a miracle beyond my or anyone else's comprehension. Spiritually speaking, I have never experienced such confusion as what I have experienced through all this. The results of the MRI hit hard. I was angry with God. I questioned God: Why did you allow this to happen? Why did we work so hard to keep Brandy from being born too early and you blessed us with not allowing her to be born when her chances of survival were so slim, especially with a heart problem? Why did you allow her to code that horrible Sunday evening? And most of all...why did you bring her back to life if she was only doomed to a life where she was unable to do anything, learn anything, hear anything, see anything, know anything?... And then...................God blessed me with peace. There is something (it's indescribable) about the fact that everything about Brandy's healing is completely in God's hands. There is absolutely nothing you nor I nor any doctor or medicine or surgery can do for Brandy that will heal her in the way that she needs and bring her beyond this brain injury. It is all in God's hands. He is the only one who can heal her now. He is the only one who can give her a miracle and there will be no one who can help it along or prevent it from happening. I accept and acknowledge the fact that God is not obligated to heal Brandy and bless our family in such manner. I hope that He will. I pray daily that He will. I also ask that He fill my cup with a little bit of hope each day...just something to hold on to until tomorrow. His will be done! I don't know what the future holds for my precious daughter. I am hopeful and excited about whatever the future is for my family. I ask that you continue to pray that Brandy be healed. That she receive the miracle she needs. I want God to hear prayers going up for Brandy everyday from saints all over the world. Please, please, please don't ever stop praying for Brandy...her miracle.

06/09/04--We finally received the results from Brandy's EEG and MRI. The EEG showed sharp waves in one portion of her brain that makes her a good candidate for having siezures. It also showed "background slowing" which is a result of a brain injury. We don't really understand what "background slowing" is. As for Brandy's episodes that we have been treating as siezures, the EEG did not show any electrical activity indicating siezures. That is good. Unfortunately, however, they said that there is a possibility that Brandy has enough fluid surrounding her brain (as a result of injury) that any siezure electrical activity could be masked. The MRI showed severe, diffuse, symmetrical brain damage. That means that she has significant brain damage and scarring of brain tissue throughout her entire brain and brain stem, and that not one part is better or worse than another. They said the MRI also showed that her brain has shrunk. From our limited understanding we think that it is not likely that her brain will shrink anymore, but it may not grow anymore either. What does that mean?...we don't know for sure. The neurologist said that it is still going to be based on how Brandy does as to what her future will be like. They did say that because she has not made much improvement over the last 5 months and their evaluation of her today was not real great and from the results of the MRI that the outlook is not good. They said we could hope for the best but be aware that Brandy may never get any better than she is today. We don't even know how or what to think or feel right now. This news has just torn us to pieces. Please pray that God will give Brandy the miracle that only He can give (medically speaking there is nothing more the doctors can do). Pray that she will make improvements over the next few months that will just astound everyone, especially her doctors. Pray that if any of the medications are causing her progression to be slower than it ought that she will begin to progress above the effects of those. Pray that her progress will be constant and strong and will continue for years and years. Please pray.

06/04/04--Brandy is doing well. She has had a busy week. On Tuesday she had an EEG. She did very well throughout the test and the reading should be much clearer to read since she didn't cry like she did during the last one. We were supposed to get the results back by the end of the week, but after calling neurology this morning I discovered that her neurologist is not in the office today and will only be answering emergency phone messages. I guess we will wait patiently until next week to find out the results of the EEG since we have no other option. Brandy also had an MRI on Thursday. It was very interesting. She did just fine with the sedation and throughout the test. They said she would sleep the rest of the day, but she was awake before we left the parking lot. We won't know the results of that until sometime next week. Keep checking back often to see our updates. As soon as we know the results we will post them.

We are very excited...Brandy has had at least two days this week where she was very responsive. She followed people and things with her eyes. She responded with little sounds. She even seemed to have some interest in things. It's been a long time since we have had a day or two like that.

05/28/04--A summary: Brandy is on Aldactone, Captopril, Prevacid, Digoxin, Phenobarb, Zonegran, Klonapin, MiraLax. She is off oxygen, but is on the monitors at night. She gets fed through her Button every 3 hours in the day and continuous at night for 10 hours. She is on Soy Formula and it works the best out of anything we have tried. The EleCare Formula did not work for her. She is weighing right at about 14 pounds, and because of her growth we are increasing her feeds a little. She is still our little princess!

05/28/04--Brandy is doing well, considering. Unfortunately she is still having seizures, so now we are adding Klonapin to our list of medications. Neurology is starting her on a very small dose until we see what the EEG reveals on Tuesday. Dependant on that, the plan is to increase the Klonapin and wean off the Ativan. We are so hopeful that this will work. It is absolutely heart breaking to watch Brandy struggle with seizures, not knowing whether with each day she is sustaining more brain damage because of the seizures. We got a good report from Cardiology today. Dr. Overholt said we will just keep setting goals for Brandy and as long as she is doing well and growing then we will keep going as long as possible before another surgery. Right now the goal is to make it to the end of summer.

On a differnt note...Brandy's G-tube has been pulled and snagged a lot this week. For some reason it seems that all of a sudden it just started getting in the way of everything (legs, arms, blankets, etc.) Needless to say, I (Julie) decided to call the Pediatric Surgeon this Wednesday to see if we could possibly come in earlier than next week to have her Mic-Key button put in. The answer was "no". Well, Thursday morning at 7:00 a.m. I gave Brandy her medication. The Prevacid promptly clogged her tube. It wouldn't flush and it wouldn't pull. Nothing was going in and nothing was coming out. I called the Pediatric Surgeon On-Call (it was too early in the morning for any of the offices to be open yet). The Dr. said to take Brandy to the ER and have them either unclog it if possible, replace it or install the Mic-Key Button. Brandy and I left early for the ER hoping for a quick ordeal because she was due for her seizure meds and a heart med right away. I was a little panicked. By 12:15 p.m. we were finally going upstairs for Radiology to put her Mic-Key Button in. It really hurt her to have it put in. For some reason they thought it best not to use any anesthetic when doing the procedure. They had to dilate the existing hole to make the button fit. I really had a hard time after this procedure...just knowing that it probably hurt like everything to have it installed then just to touch it brought her alot of pain too. I was almost sick to my stomach. Today she is doing much better. The pain is less (Tylenol has been our friend), and she is not as jumpy about me touching it to hook up the pump, give meds, or clean it. I think it is going to be a great blessing to have it. It doesn't have anything dangling that can be snagged on something. She is going to be able to wear her clothes that don't have a button front (I always dressed her with button-front clothes so I could keep the G-Tube in plain sight for assurance that it hadn't slipped under her leg or something.) I am planning on sewing a button hole in some of her clothes (one-piece, no front access) so there will be easy access to her Mic-Key Button.

05/22/04--Brandy had her first major outing yesterday. We went to her Aunt Lizzy's High School Graduation. We are thinking about going back to church again since Brandy is now off oxygen and it is much easier to get around.

05/22/04--Brandy went to the GI doctor yesterday. Dr. Steele was great. She agreed that Brandy seemed uncomfortable, so her goal is to try different things until we find something that works. She explained that with a Fundoplication, the part of the stomach used for the wrap is also the part that relaxes and expands to accomodate a full (or filling) belly. With much of that part of the stomach now gone (used as a wrap) children sometimes are uncomfortable, so we may try some medication used to relax the stomach more. Currently, Dr. Steele has taken Brandy off Reglan (often causes abdominal pain and effectiveness is unclear) and Zantac (children can gain a tolerance to it). Brandy will now be on Prevacid to manage stomach acids. She is also starting MiraLax, a non-habit forming stool softener. Dr. Steele has a plan to follow for Brandy, and we are excited. Dr. Steele did say that heart babies who have had a Fundo most often won't eat. We were encouraged to know that at least part of our struggles are common. Dr. Steele said it might take a very long (and patient) time before Brandy eats by mouth again (possibly years). We will take on this new challenge with great anticipation, excitement, and patience.

05/18/04--Brandy went to the Neurologist on Monday, 5/17. Upon watching the video of her seizure activity Dr Perkins set up an EEG for the same day. Brandy also had a Phenobarb level taken. Dr. Perkins was speculating that Brandy possibly was suffering from infantile spasms, also known as West Syndrome. She was hoping the EEG would confirm if it was or not. Wade and I researched West Syndrome that evening and discovered that it is almost always associated with Mental Retardation and Cerebral Palsy. We couldn't find out if the spasms cause these or if these conditions are just part of the syndrome. Needless to say we weren't very encouraged. We did find some stories of people who suffered from West Syndrome and ended up living relatively normal lives. Those stories lifted our spirits a little. Today we waited and waited for the phone to ring with the results. This afternoon I talked with the Neurologist and she said that as of right now it did not look like Brandy has West Syndrome according to the EEG. However, she did say that the EEG was very hard to read since Brandy cried the entire time it was taking place. We are scheduled for another EEG on the 1st. It is to be a sleep deprived EEG and hopefully Brandy will sleep through at least part of the test. As of right now the plan is to start Brandy on a different medication, Zonegram. It is known for working well on children who have myoclonic jerks and infantile spasm-like seizures.

05/10/04--Brandy is still having seizures and myclonic jerks, so we are increasing her phenobarb over the next 2 weeks to 5ccs every 12 hours.  Neurology is setting up an appointment for another EEG.  We haven't had one since January.  We have an MRI scheduled for June 3rd.  Brandy seems to be in a lot of pain abdominally so we are looking forward to seeing the GI doctor next week.  We are considering switching to an elemental formula if we can get everything straightened out with her PCP and WIC (it is very expensive).  Hopefully it will work and settle with her tummy more.  We think she has suffered enough.  This week we are finding out how difficult it can be to get anything accomplished when dealing with medical personnel, especially ones who are new to us.  For some reason some people don't like to listen and think we, as parents, are possibly not competent or knowledgeable.  Keep praying.  Brandy still desperately needs a miracle of healing.