History

Friday, January 25, 2008 2:38 PM CST

Positive update!

We got good test results this week. Estar's IGG level is back into normal ranges, her infection seems to be under control, and the doctors are totally pleased with the progress she is making toward healing. If all continues on this path, Estar will start therapy in two months, and a year after that will be past the recovery phase of the spinal issue. It will be nice to only fight one monster at a time!

On another note, Monday Estar returns to school. She will be taking one class to start out, working up to a half day maybe by the end of school. She is so excited to see her friends again.

Thank you for your continued prayers and support for Estar and for us all.

Friday, December 14, 2007 11:02 AM CST

We've had a bit of positive news this week. Estar is responding to the antibiotics therapy and we've been able to move from daily IV antibiotics to oral. The best part about this news is that it allows her to return to school. Her graft seems to be healing, so starting January 28th, she will be allowed to attend classes on a part-time basis. Estar is very excited about returning to school and being able to see her friends. We are still battling the immune system issue and low blood count, though both have improved. Thank you for your continued paryers. :)

Friday, November 16, 2007 7:51 AM CST

Finally, some positive news to report! Estar spent much of yesterday making the rounds of her doctors, and at each stop we got good news. Dr. Hostin thinks her incision looks good, and all of the staples (54 or so!) have been removed and replaced with steri-strips. This means Estar can finally shower, and she is incredibly thankful for this! At Dr. Allen's office, we learned that Estar's antibiotics level is high, which is good. We are able to go to once a day IV antibiotics (which means no more 5 AM wake ups, another happy thing for all of us). Her blood tests show her body is responding to the antibiotics, so the suppression therapy is working. There was even talk of moving to oral antibiotics much sooner than a year. THANK YOU for all of the prayers and energy that has brought this miraculous change.

On other notes, Estar is doing an amazing job of keeping up with her school work, and is on the honor roll for this nine weeks. She frets over her work more than any teenager ought to, but she is doing good work. On top of her work, she is working on her second book, this one a fantasy.

On Wednesday, a friend came over for the evening and this did much to lift Estar's spirits. They played games and went "for a roll." Overall, Estar is much more encouraged this week.

Today Estar is at Dr. Silver's office, receiving platelets. She will be there most of the day. Hopefully, we will have good news to report from this doctor as well.

She is still weak and in pain, but her pain is better. She is also still anemic, though the numbers are inching toward normal (very slowly). Please keep this problem in your prayers. No cause for the anemia has been identified, but as we are out of the danger zone, the docs are not as concerned.

We have so much to be thankful for as we go into our holiday week. We are both thankful for a break from school. We are extremely grateful for positive news and improved health. Most of all, we are thankful for all of you, our staunch supporters who lift us up. May your holidays be blessed.

Thursday, November 8, 2007 11:37 AM CST

A whirlwind of things have happened since my last post. Even though it's only been a week, it seems like forever. We got out of the hospital and went home at about 2:00 last Wednesday. We began administering IV antibiotics at home twice a day to prevent infection and to treat the infection the doctors expected to find. We went to see Dr. Hostin and Dr. Allen (the infectious diseases doctor who is following Estar for infection) the next day. Estar looked good, was in a good bit of pain, but overall seemed better for the saroma clean-up. Until Saturday, she seemed to be on the mend.

Sunday, she started running the low-grade fever again, but it was easily remedied with Tylenol. Tuesday, the visiting nurse came out and drew labs. Tuesday night, Estar came in complaining of serious pain in the upper section of her incision. It was red, hot, and puffy, so we called the doctor. Dr. Sims (Dr. Hostin's PA) told us her cultures came back positive, so she does have infection in the bone graft.

Wednesday, Dr. Allen called to say that Estar's hematocrit and hemoglobin levels were very low. He ordered stat labs to confirm there was no testing error. There was no error; she is very anemic, which is making her feel even worse -- shaky, weak, dizzy, lethargic.

After all this, at about 10 PM (everything happens at 10 PM) Estar came in screaming in pain. When the nurse accessed her port, they sent the wrong size of needle, so when Estar laid down to sleep, the needle poked through her port. This was a big ordeal, but thankfully we had an access kit at home and I still remember how to use it. We had the right sized needle, so we removed the access line and placed a new one.

Estar and Bobby are at Dr. Hostin's office now. He, Dr. Silver, and Dr. Allen are trying to decide on our next step. Here's the options we are looking at:

- They can try to treat the infection in the graft, suppressing the infection long enough for the graft to heal. This means she will be on IV antibiotics at home for a year (and unable to attend school for most of that time), followed by another year of oral antibiotics.

- They can remove the bone graft, treat the infection, then redo the bone graft. We are hoping to not have to go this way as it is a minimum of two more surgeries.

- Estar is taking high doses of iron to help the anemia. If this doesn't work, she may have to go into the hospital and receive a transfusion. We also have some concerns as to the causes of the anemia. The most concerning possible reasons are system failures or internal bleeding.

Please keep Estar in your prayers. She is so tired, and her spirits are very low. She misses her friends incredibly and feels isolated and unwell. She is in a good bit of pain. Thank you to everyone who has taken the time to send cards and notes. This helps more than you know. Will write more as soon as we have answers.

Wednesday, October 31, 2007 9:54 AM CDT

It's been a long night, but we are looking at a shining morning. Surgery was completed last night at 1 A.M. Only Estar slept, LOL! They successfully cleaned and reclosed her incision, and we are on the regular floor. True to form, Estar woke up at 8, asked to have her IV out, the pain meds removed and to go home. She has gotten up and walked around, and ate a huge breakfast for such a little girl. Apparently this hospital makes good toast and fruit. They have taken her off the IV fluids and she only has an IV for IV antibiotics.

Everything they've seen looks like she had a saroma, a gathering of fluid inside the incision. There has been no sign of infection, but they are still culturing the samples taken in the OR. We won't know for certain for 5-7 days. To be safe (in case there is infection, they don't want to give it time to build up) she starts IV antibiotics today. These will be continued at home for 6-8 weeks like before. Please continue to pray that no infection will be present so Estar can continue to recover quickly.

Today is a whirlwind of getting set up to do IVs at home again, but we are all happy to see Estar so cheerful and well. Even though she just came out of a big surgery, she actually seems to be feeling better. She's more worried about schoolwork and getting her cat cared for than about herself. She's already asked for her computer, her CD novel that she's reading for English, and "real food" (aka junk!).

If all goes well, we will be able to go home late tonight. We're waiting on a specialist to drop by and to get home meds delivered. She will be seen in clinic every day for a couple of weeks, but she will be very glad to be home in her own space.

Thank you for all the prayers, love, and support.

Tuesday, October 30, 2007 4:05 PM CDT

Estar is scheduled (finally) for emergency surgery at 8 PM this evening unless a spot on the OR roster opens sooner. Estar will go straight from Recovery to the PCU, and hopefully if all goes well we will get home within a couple of days. She is understandably nervous, but in general good spirits. She's most disappointed about missing Halloween though we've rescheduled her party, and she's worrying (of course) about getting behind in her schoolwork. She has been playing games all afternoon and enjoyed a huge plate of pancakes for her last meal before surgery.

Once she is in the PCU, she can have visitors. Please call before coming as things sometimes change rapidly, 214-893-1597. I am told she can have as many as she feels like and at any time of the day or night, but we have yet to verify this with the hospital. This is our first experience at Baylor. If you do come and want to bring her something, please remember she cannot have balloons or flowers as she is allergic to both. She always welcomes stuffed friends, cards, candy, and food that didn't come from the hospital, ;) Please keep us all in your prayers and thank you for your unfailing support.

Tuesday, October 30, 2007 9:45 AM CDT

Yesterday evening Estar's surgery incision opened due to some kind of gathering of fluid. The doctors are strongly concerned about infection and, long and short, she is having emergency surgery tomorrow morning at Baylor Hospital of Plano. If all goes well, recovery is expected to take 7-10 days. If there is infection in the bone graft it will be more serious and extensive. We are thankful for all prayers.

Sunday, September 30, 2007 12:41 AM CDT

We are home, amazingly early, buoyed by all of your many prayers. Estar was released yesterday, only 4 days after surgery. At the end of our stay, there was a steady stream of doctors and nurses who wanted to stop by and see how well Estar was standing and walking. I cannot tell you how many time we've heard, "I've never seen a spinal repair patient who did this well." Just a few days after surgery, she is eating, walking, and back to her old self. Her mobility is limited and will continue to be, but she is not in an enormous amount of pain. She is already asking to climb stairs, work on her writing, and catch up with missed school work. There was no infection found, so we anticipate a continued speedy recovery. We're now more worried about keeping her from doing too much! We may be going into bone stimulation therapy as early as next week. Thank you to everyone who is praying. Please focus now on praying that the graft and bones will heal.

Thursday, September 27, 2007 9:35 AM CDT

We had a fairly restful night last night. Still in ICU, but Estar is much more herself this morning. She is asking for everything to be unplugged, and has weedled her way out of two IVs and an arterial line, plus the foley catheter is on its way out this morning. She wants to lose some plugs and wires so she "can be more mobile." She's already stood up and walked a few paces, and is rolling all over the bed. Her nurses are saying they've never seen anyone move like this after this type of surgery, but then, they don't know our little fighter. Estar is taking less pain medicine than anticipated, too, and says she is actually feeling better than before the operation. She us remarkably taller, a happy side effect. She is currently resting but has a heavy day planned - watching a whole collection of anime. She can have visitors at this point in small numbers and for short times. If you'd like to visit, please call us for information and particulars, 214-893-1597.

Wednesday, September 26, 2007 2:27 PM CDT

Estar has been in surgery since 7:30 this morning. The doctor just now came to see us and said her feels the surgery is 100% a success. They were able to remove the hardware completely and replace it with new. The new hardware is much more durable, so anticipation of a good outcome is high. They found no evidence of infection in her bones, which is a big praise. Thank you to everyone who was praying for this. Dr. Hostin did say that Estar was "the most unhealed patient" he had ever seen; the hardware from her previous surgery was just loose in there, doing nothing. Angels have been really watching over her these past couple of years. His anticipation is that she will be in the ICU a much shorter time than predicted, maybe as few as 1-2 days. Dr. Hostin expects she will be up and walking by tomorrow. The big concerns are now infection and her remaining still enough to allow the bone graft to set. Please pray for these things. She is now in recovery, and by reports lucid and making requests. We should be able to go to her within a few minutes.

Tuesday, September 25, 2007 9:49 PM CDT

Estar's Thought for the Day: Victory is sweetest when you've known defeat. -- Malcolm Forbes (1919-1990) American Publisher

Tomorrow is the big day. Surgery is scheduled for 7:30 a.m. at Medical City. We have to be there at 6:00. The docs expect her to be in surgery for at least five hours. We will post as soon as we know something. All prayers are appreciated!

Monday, September 3, 2007 11:26 AM CDT

We are preparing for the surgery on 9/26. There is so much to be done -- blood tests, blood donations, CAT scans. It is a whirlwind of activity. We really appreciate all of the prayers, positive energy and comments, and support everyone has been sending our way. It is boosting Estar's morale more than you know.

Speaking of morale, Estar is keeping positive and encouraged, and is in general good spirits. Her main concerns are that this time the surgery "works" and how she is going to keep up with her school studies. Those who know her know that she is very "type A" and obsesses over her school performance. She has been studying all weekend long. I'm going to make her go fishing later, maybe, LOL!

She said something to me the other day that completely exemplifies why this girl makes it through struggles that take others down. She said, "If I have to go through this, Mom, I'm going to go through it like a hero." Her words gave me a little shock. I felt ashamed for all the petty things that I let bother me on a daily basis. I determined to take the things that come at me, and go through them like a hero, too. Estar's insight and courage have always put mine to shame.

Speaking of Estar's insight, she is excited because we are going to be able to release her book in e-book format before her operation. For those of you who don't know, Estar has written a book about what she has learned from her life of challenge. It is a beautiful work that is inspiring for anyone who is facing hard times. It has been in the publication process since March. This is what Estar wants to do with her life -- write books and do graphic design. We are proud that she's taken the reins and created this work of art. We pushed it through a bit so she could enjoy being a published author before her next hurdle. Her writing is as inspiring as her life. If you want to see a sample, here's her site: www.lessonsfromawishchild.com.

Some general info on the upcoming:
- The surgery is scheduled for 9/26, early.
- It will be done at Medical City Dallas.
- The operation is expected to take five hours.
- We are expecting to be in ICU for 3-4 days, and then in the hospital for 2-3 weeks, if all goes well (which it will, we claim that!).
- Recovery at home is expected to take three months.
- Rehab is expected to last for one year after that.

All prayers are appreciated.

Wednesday, August 15, 2007 8:26 PM CDT

Today we spent much of the day at the doctor's office having Estar's back checked. Her spinal fusion surgery has failed for 3/4th of her back and her spinal curving is now 56 degrees, much more than before her original surgery.

The problems we identified today are that one of the hooks that holds the rod in place has become unattached and is loose (creating kind of a ticking bomb in her spine) and there is likely infection inside her bones which must be dealt with before she can have the old rod removed and a new rod placed (without which, she will not be able to breathe, and could die).

Her initial (and hopefully only) surgery is scheduled for 9/26. They are hoping to remove the damaged hardware and replace it with new and start a new bone graft. If there is infection, they will have to remove all hardware, treat the infection (long hospitalization for IV antibiotics), then go back in and redo the surgery. At best, we are looking at three months of hospitalization and treatment, then another year of rehab and recovery.

Everything is pretty touch and go right now, and we are all understandably upset. We did not expect this. There's no way to know if the problem is caused by bad initial treatment, her immune system issues, or the steroids she has to take for her lungs. There is a possibility that the infection she got the month after her first surgery never healed completely. I hope this is making sense. We know you love and care for Estar, and right now we really need prayers. If you need any more info, just call me.

Thursday, March 1, 2007 5:09 PM CST

Today has been a pretty good day. Estar went back to school, stitches and all. She is tired, but happy to be back learning. Next Tuesday she goes back for platelet therapy and will see the doctor then.

Tuesday, February 27, 2007 10:21 PM CST

Last night was pretty rough. We took the tegaderm off of the multiple incisions, and she is so sensitive to tape that her skin underneath was just raw. She is a good bit worried about the stitches everywhere, and (irrationally) that they might come open. We keep reminding her that these were put in by Dr. Roden (who has done all of her surgeries since birth, every one perfect), but you know Estar. She worries.

Today she rested all day and drank lots of fluids. She seems much better this evening. She also was finally allowed to take a short shower which also seems to have perked up her spirits. One day at a time, we are on our way to a full recovery. Thank you to all of you who keep us in your hearts and prayers.

Saturday, February 24, 2007 11:06 AM CST

True to form, Estar kept her spirits high and came through her surgery with ease. She went in to the OR at 7:30, was out by 9:00, and by 11:00 we were released and on our way home. She didn't wake up this time while she was under, and she recovered very quickly. About an hour after surgery she was eating teddy grahams, drinking apple juice, and up to the restroom. Her nurses were amazed, but they don't know this fighting kid like we all do. By noon, we were all at Denny's eating hashbrowns with onions and hot sauce.

Last night, Estar's friends came over and they watched movies and laughed until the codiene finally knocked her out. She slept through the night and is up today bugging to go to the movies. She's already given up on the codeine, and asking for only Advil.

Thank you all for your prayers that we know brought us safely past this hurdle.

Thursday, February 22, 2007 8:52 PM CST

Tomorrow is surgery day -- due to medical conditions, an allergic reaction, and respiratory setbacks, we had to reschedule. She goes in at 6 AM. The procedure will be done at 7:30, and hopefully by 9 she'll be in recovery. She's a little scared, but in fairly good spirits. She ate a HUGE plate of super nachos (with TONS of jalapenos) for her "last meal." I'm amazed at what this pint-sized gal can pack away.

We met a Moonlady friend today who gave Estar some beautiful rocks for her collection. These really made her day. Thank you all for the notes, letters and gifts. These are really helping more than you can imagine.

Sunday, February 18, 2007 10:22 PM CST

Surgery to remove Estar's mediport and place a new one is set for this Wednesday at noon. All prayers are gratefully accepted.

Friday, February 9, 2007 11:14 PM CST

As most of you know, Estar has been having several problems this week. She had some asthma symptoms related to the weather change on Tuesday, and spent most of Wednesday at the hospital all day getting treated for the respiratory mess. We managed to catch it before it turned to pneumonia, and she tested negative for flu, so we were lucky. We went back on Thursday for her gamma therapy. Her mediport failed in the middle of the treatment; Estar was unable to get the medication for the side effects to the IVIG treatment, which is leaving her extremely ill -- nauseous and dizzy and itchy and spiking fevers.

Today we went back to the hospital for treatment for the port. After a grueling day of doctors trying their best to salvage this mediport, we are now looking at surgery to remove it and place a new one. These things don't last forever, so having it fail is not the issue. When and how it has failed is of great concern. Because she must be able to receive platelets again in three weeks, they are scheduling us for surgery probably as early as Monday or Tuesday. There are other complications because her respiratory functioning is impaired from her asthma attack on Tuesday.

Her surgery will be performed by Dr. Jay Roden, the surgeon she's had all her life. That much is good news. She is very worried and feeling overall just sick. We will keep you posted and thank you for your prayers.

Saturday, September 2, 2006 10:03 AM CDT

Today things are looking *much* better. We had a little scare over the past couple of days as Estar began to run a low-grade fever. Those of you who know her, know that if she is lying around listlessly, she's really sick. We had a couple of days of that, and we were starting to get worried. Another trip to the doc, some reassurances from her own doctor, and she's getting back to her old self. She's up today, dressed to the nines, and begging to go to the mall. :) I expect she will go back to school this week, a couple of weeks before anticipated. She received some nice letters and cards from her friends at school -- thank you, Coach McCraw! This, more than anything, lisfted her spirits. :)

Thursday, August 31, 2006 5:46 AM CDT

Estar continues to improve. Yesterday had some rough spots with a lot of pain and nausea, but she seemed more her old self by evening. We are continuing to watch for infection, which as you know, was our biggest enemy in her last surgery. Her spirits are high and she has been surrounded by loving, supportive friends. She reads all of the guestbook posts, so thank you for these!

Wednesday, August 30, 2006 7:32 AM CDT

We are home from the hospital today, and Estar is glad to be sleeping under her kitty again. The srugery went amazingly well, and we are anticipating a shorter than expected recovery time. She is hurting, but otherwise is much more mobile than with other surgeries. Something has triggered the hunger button -- and I thought that only teenage boys ate like this! Last night in the dead of the night, her dad *had* to take her out for hashbrowns. If you judge on appetite, the kid's well on the road to recovery. :) Thank you all for the prayers and positive thoughts. We know her improvements are because of this.

Monday, August 28, 2006 8:42 PM CDT

Estar came through her surgery like a champ. She was in the operating room for about an hour, in recovery for three, and is not resting and happy in her room on pediatrics. She is eating (like a teen -- sushi, a milkshake, and fruit), watching anime, and has been up once since the operation. If all goes well, as it looks like it is, we will be home tomorrow. Thank you for your support and prayers.

Estar says, "Kanichiwa." :)

Sunday, August 27, 2006 5:59 PM CDT

Tomorrow is the big day. We go in for removal of the top of the spinal bar. The doctors expect Estar will be in the hospital for 1-3 days and home recovering for 2-3 weeks. We will post info at this site. All prayers are welcomed and needed.

Thursday, July 20, 2006 10:44 AM CDT

Estar (aka Little K) is scheduled for spinal surgery on August 28. The doctors will be removing part of the metal implant that has held her bone graft in place for the past year. She is in general good health and they don't expect complications. She is scared but otherwise in good spirits. The anticipated hospital stay is 1-3 days, with a recovery time of 3-4 weeks.

The surgery will be done at:

Medical Center of Plano
(972) 596-6800
3901 W 15th St
Plano, TX 75075

It's at the corner of 15th and Coit.

Please keep her in your prayers, and feel free to contact us for any further information.

Sunday, March 12, 2006 9:04 AM CST

It has been some time since I posted, mostly because things are going well. Estar is largely recovered from her surgery, and chomping at the bit to get back on roller coasters. She is still receiving her IVIG treatments every three weeks, and her IGG level has remained good. We are enjoying this time of relatively good health! We are all on Spring Break -- Dad took vacation, so he's off, too -- and we are taking a daytrip to Ft. Worth this week, which has everyone excited. We are creating authentic bento box lunches (Japanese stuff) and are taking a picnic to the Japanese Gardens.

Tuesday, September 27, 2005 4:09 PM CDT

Happily I have good news to report. Yesterday Estar went to the doctor and he is totally impressed with her recovery. Her infection, rather than being suppressed, has been eliminated. She no longer has her port accessed, and is off the IV antibiotics. She is able to return to mostly normal functioning. The greatest threat at this point is falling, but she is allowed to do mostly whatever she wants, including go to Six Flags. :)

Tuesday, August 2, 2005 8:05 AM CDT

It's been another week since the surgery and all is going well. Yesterday Estar got her dozens of stitches out, and the incision has healed nicely. One tiny area has not totally closed, but the doctor believes that it will within about 10 days. This is another example of overcoming circumstances and answered prayers -- the docs originally did not expect the incision to heal for more than a year (due to the infection). Speaking of it, despite dire predictions of the infection not healing until the hardware is removed, Estar seems to be responding to the antibiotics. She has had no fever at all and there is no sign of infection at her incision site.

On other notes, we go back to school next week and have been getting ready. Estar will go back for half days at the beginning and will be home bound for half a day. We are very happy that half a day is being allowed...she won't be getting behind at school. She has been very excited at all of the shopping we've had to do. Thanks to the surgery and her new heighth (after surgery she was two inches taller), we've had to buy all new clothes. To everyone's surprize, she did not want jeans and t-shirts. She's looking quite stunning these days in "girly" clothes -- skirts and dresses. However, she couldn't resist a pink camo t-shirt that had monkeys and cats on it. I expect that will never change. :)

Thank you to everyone who has called and sent cards. These are so encouraging. She has about 20 postcards now, and I think last count was 15 states.

Saturday, July 23, 2005 4:52 PM CDT

Finally, we have some good news to report. We are home. We are a long way from recovery, but we're making progress.

The tests showed that the bone grafts are indeed infected. The doctors are at odds about what to do to resolve it. The ortho docs say there's no way they are going to remove the hardware in Estar's spine until at least a year has passed, because they do not think they could re-do it, and without it, she can't breathe. The infection specialists feel that the metal rods have to be removed for the infection to heal. So we are home on "suppressive therapy," which is long-term IV antibiotics. To make it more complicated, she is allergic to the best antibiotics for this bacteria, so we are taking one that has not been approved for children, but is the safest we could find that she could take. She should be on IV treatment for at least 8 weeks, then will take oral antibiotics for most of a year.

Still, because we are able to handle administering the meds, they let us come home (MUCH better than the 6-8 weeks in the hospital they were predicting). Estar is SO much better. Just seeing friends and pets (and having her own computer back) has improved her health immeasurably. She is all giggles and no pain today, hasn't needed pain medicine all day.

The infusion went well today, was easier than we anticipated, even though Estar has her doubts about the competency of "nurse Mom." So far, the therapy seems to be working -- no fever at all.

Please keep us in your prayers, and don't hesitate to call. Many thanks for all the prayers, phone calls, letters and gifts that are keeping her encouraged as she faces this hurdle.

Tuesday, July 19, 2005 9:19 AM CDT

Estar came through the surgery yesterday just fine. She is in a good bit of pain, heavily medicated, but otherwise her plucky self. She amused her surgical team by talking to them while under general anesthesia; she demanded to know if each person who touched her was wearing non-latex gloves (she's allergic to latex), "cuz we all know I've already got enough troubles." She's already asking for food and video games, so we know she's alright.

They had to reopen her incision in three places to clean it out. Some parts have healed over completely, so they didn't have to open the entire site. They took cultures from her bone graft; it showed signs of infection, but nothing's sure yet. Please help us pray this graft does not have to be replaced. She has one drain on her back, which is not producing much. We expect to have her up and walking later today.

It is possible, if all goes well, that we could come home this weekend. This is so important to her. Please help us pray for a swift recovery that will allow us to get back home where the friends, pets, and happiness waits.

Thank you all for your support and encouragement. We can have visitors and phone calls, so feel free to give us a ring, 214-893-1588 or stop by, Medical City, Room 655D.

Sunday, July 17, 2005 1:46 PM CDT

The doctor's visit today was hopeful. Estar's wound drainage has slowed, which might mean a much simpler, shorter surgery, and less likelihood of a bone graft infection. They will be taking her to surgery to clean up the wound and remove any saromas tomorrow afternoon. We don't have a definite time because they are working her into the OR schedule.

She is in much better spirits today. She is sitting up in bed, smiling and joking, more like her old self. She enjoyed listening to the ASE guys on comms last night. Their bantering around was amusing and a refreshing change. I'm glad we managed to get the computer in the hospital room working.

We have established an information line, Estar's aunt, since we will be unable to receive calls during this time. After Sunday night, please call 301-682-9521 and ask for Robyn if you'd like up to the minute information. Until Monday at about lunchtime, we welcome your phone calls at 214-893-1588. Please help us pray that the graft and hardware are not infected. If anyone would like to come and keep us company while Estar is in surgery, we'd welcome some distraction. Just give us a call and we can let you know when and where we will be. Right now, we don't know an exact time for the surgery.

Thank you all so much for your cards, phone calls, gifts and letters. It has been a tough, depressing week, and all of your thoughtfulness has been a critical part of her recovery.

Saturday, July 16, 2005 6:48 PM CDT

Today doesn't bring any better news. Estar has a deep wound infection and a probable sarcoma has developed in the soft tissues around the surgery site. After more than a week on IV antibiotics, the doctors are fairly certain they will have to take her back to surgery to remove the tumors and to clean the wound site. There is concern that the bone graft or the hardware used in her spinal fusion may also be infected. If so, they will have to re-do the operation and bone graft. This is currently scheduled to take place on Monday. If the bone graft is not infected, we should be able to return to pediatrics after recovery; if not, we will be back in ICU. We have established an information line, Estar's aunt, since we will be unable to receive calls during this time. After Sunday night, please call 301-682-9521 and ask for Robyn if you'd like up to the minute information. Until Monday morning, we welcome your phone calls at 214-893-1588. Please help us pray that the graft and hardware are not infected. If anyone would like to come and keep us company while Estar is in surgery, we'd welcome some distraction. Just give us a call and we can let you know when and where we will be. Right now, we don't know an exact time for the surgery.

Friday, July 15, 2005 12:06 AM CDT

We finally have some answers and they're not good. Estar's surgery site is seriously infected, so much so that they are going to have to open her back up and clean it, then re-stitch it. The operation is set for tomorrow (Saturday) morning. Afterwards, we may be able to come back to the floor (instead of returning to ICU) depending on how she reacts to anesthesia. Please keep us all in your prayers. This has been a really rough week.

Tuesday, July 12, 2005 1:53 PM CDT

Dr. Istry came by just now and saw Estar. He is pretty convinced that her back is seriously infected. His plan is to take her off one of the antibiotics, the one that treats staff infections, and see if her fever comes back up. If it does, he will put her back on it, but that one requires frequent monitoring, so would prevent us from going home (blood levels have to be drawn, etc.). If her fever doesn't shoot back up, he will either leave her on IV Unisom, or switch her to oral augmenten, and send her home (we'd take care of the IV, etc.). He is strongly considering doing a scan of her back, thinks we might have a large abcess in there that needs to be drained. Either way, we are probably here for several more days, he says because it takes a couple of days to determine if she is going to relapse. If you'd like to call, she could use some encouragement. Call at 214-893-1588. If you're planning to stop by and have any old Nintendo 64 games, this is the system the hospital has for the kids, and she is requesting different games.

Tuesday, July 12, 2005 9:28 AM CDT

We've been back in the hospital since early Saturday morning. Estar has developed some kind of infection and was running a fever of 104+. After many tests, the doctors are not sure what is causing the problem. The initial though was infection in the surgical site or spinal meningitis. So far all the tests have come back negative. So we are waiting for answers, and she is receiving IV antibiotics around the clock. She's sicker looking and feeling than I've seen her in some time, but in between fever spikes, she returns to her cheerful self. Phone calls, visits and gifts are welcome.

Tuesday, June 28, 2005 9:44 AM CDT

We came home from the hospital yesterday and Estar is going great. The docs are continually impressed with how well she is doing and how fast she is healing. We are convinced it has a lot to do with the vast amount of prayers that God is hearing on her behalf. She is able to walk about a bit, but must use a wheelchair for longer jaunts. She can sit up with help and can sit in a chair for a short period of time. She is still quite medicated, but is not in pain. She is resting solidly for several hours at a time. Getting home did her spirits a lot of good. There have been a steady stream of little people through the door bringing candies and small toys and laughter. We really appreciate all the things you've all done to help Estar stay encouraged in this difficult time. Estar is able to accept phone calls and short visits. Any cards or gifts should come to the house, let me know if you need an address. We anticipate her being significantly better in two weeks, back to a modified normal routine in six weeks, and through with rehab and therapy in 12 months.

Saturday, June 25, 2005 10:46 AM CDT

Estar had a good night, slept for many hours. The doctors changed her medicine, taking away the offensive narcotics (Estar hates them) and have started her on something that is more a muscle relaxer and less a pain medicine. This seems to be tremendously helpful for managing her pain. She has been seeing pretty colors :) and amused the staff for quite a while conversing with angels. This morning she got up and walked from the bed to the door. Her greatest struggle right now is a sluggish system (normal post-surgery); she needs to go but can't, which is causing stomach pain.

Estar is awake this morning and cheerful, requesting visitors and video games. We are able to access this page from the hospital and are printing her guestbook comments for her to read. Feel free to post; she is taking great encouragement from her website visitors.

Friday, June 24, 2005 10:21 AM CDT

Estar is still in ICU, but that is expected. She will likely remain in the ICU for another 4-5 days. She is off of the morphine, and now on Tylenol 3. She was able to stand for a few minutes yesterday and is turning herself from side to side. We will start trying to stand and walk a little two times a day starting today.

Estar had a very good night and slept for many hours. Her foley was removed this morning along with her arterial line. She is getting up and down to use the bedside commode.

She is very coherent, cheerful and is enjoying playing video games. Estar is thankful for all the good wishes, and wanting visitors. If you'd like to call, the room phone number is 972-566-6577. Please call between 9 AM and 5 PM CST.

Estar has decided that she would prefer not to get flowers because her allergies are giving her problems. However, she welcomes cards and requests books, movies and video games (she has PS2 and a gameboy advance with her, and a DVD player in her room).

Thursday, June 23, 2005 9:33 AM CDT

Estar's back surgery went very well yesterday. She has already stood up and taken a few steps. The Doctor said she would not be able to eat for a few more days (stomach shuts itself down with this type of operation) but she is already tolerating a clear diet as of last night. The doctors are continuously amazed at her spirit and determination. She is already asking for visitors, anime, and her gameboy. She is still in the ICU but they let her have 2 visitors at all times. Cards and gifts are also welcome (hospital's address on this site). If you'd like to leave a message or get up to the minute information, call the phone lines listed here.

The top 4 things she had to say after were:
1. Did I say anything stupid while asleep?
2. Where am I again?
3. Can I have Pizza yet?
4. Thank you all for coming to see me, in an "I Love you man" voice...to visitors, nurses and the janitor. :)

I am back to the hospital now thank you for the prayers and please keep tham coming.

Bobby

Sunday, December 19, 2004 0:04 AM CST

This has been a tough month filled with distressing news. We found out that Estar will have to have a major back operation that has some serious risks because of her health conditions. The operation will involve fusing a metal rod to Estar's spine to correct her scoliosis. The surgery will take 5-6 hours, and she will be in ICU for several days afterward. Estar will be placed back on a ventilator for the operation and possibly after. We are trying to wait until summer for this, hoping her body will cooperate and she can stay fairly stable. Please join us in praying for her as she faces this next hurdle.

Monday, October 11, 2004 9:49 PM CDT

This weekend was a real gift. We went to Beavers Bend, Oklahoma and hiked up a mountain. We slept in a cabin in the woods, ate roasted marshmellows from a roaring campfire, and went on a "jeep safari" courtesy of some of the nicest people in the world. This trip was especially helpful since Estar's "numbers" have been steadily dropping for the past six months. It was nice to see some color in her face and some ear-splitting grins. When you're out there in the woods, the stress just melts off. I recommend it to everyone. I also heartily endorse Last Resort Cabins, http://www.brokenbowlastresort.com/.

Monday, October 11, 2004 9:49 PM CDT

Friday, August 13, 2004 8:49 AM CDT

Yesterday we spent a good bit of time in our backyard, piled under blankets and looking at the Persuids Meteor Shower. Estar was so enchanted with the "stars" streaking across the sky bringing wishes. Some of her wishes were typical kid wishes (hamtaro -- her favorite cartoon -- games, books, and posters)and some provided a look at her interests, hopes, struggles and dreams. She wished for a friend at her new school, someone she could share secrets with and visit on the weekend. She wished for the war in Iraq to be over and for our soldiers to be safe. She wished for healthy days so she can run outside and fish. It was a lovely evening and our prayers are that all of her wishes, big and small, will find substance and reality.

Wednesday, August 11, 2004 8:40 AM CDT

It's a new day and we have fun planned! Estar starts at a new school on Monday, going to middle school for the first time. She is SO excited! Tonight we get to meet teachers and pick up schedules. This is a real milestone for us all.

Estar had a rough night, was very stuffy and again having trouble breathing. These ozone red days are really tough on kids with breathing issues. Please pray that rain will come on in and will wash the air clean.

Tuesday, August 10, 2004 9:55 AM CDT

Just got a call from Dr. Silver's office - Estar's August IGG Level was 897, which is excellent! Good news is always welcome!

Tuesday, August 10, 2004 9:33 AM CDT

The ozone in the air the past few weeks have given Estar significant breathing challenges. Her last breathing test was the worst in a long time. Her prednisone was significantly increased, so she is now a hungry little lady! Otherwise, she is in good spirits and excited about going back to school.

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