The Butterfly

Wed., Feb. 10

Since the last post we visited with the endocrinologist and the new GI doctor. We really like the new GI doctor so far. She is very knowledgable and motivated. Hannah  had some labs drawn Tue morning to check on some things that may open up some other options. Unfortunately, we got a call from the lab today saying that something went wrong and that they were going to have to redraw the labs again next week. Hannah is going to hate that. Her weight is steady. We need to see some progress!

Fri. Jan. 22

After a really solid December, Hannah had a couple of small setbacks at the beginning of the year, but she is still doing well overall. Her muscle tone is better and she seems to have more energy most days. On a certain level, every day is as struggle, but we welcome the struggle, knowing that it is worth every inconvenience and hardship we've faced.

Thur. Dec. 24

Hannah is still doing better. Since the last post we have had great consistency. If we keep this up we will definitely see measurable improvement.

Tue. Dec. 8

Hannah is doing much better once again. The cycle continues, but be at least will avoid a PICC line for the time being.

Wed. Nov. 25

The MCT oil is being tolerated well, but it is working to make her lose more fat right now. We still need to get her calories up. We'll try more juice and sugar. In the mean time, we are in conversation right now with her GI team to consider a PICC line next week for a few weeks of TPN to get her a boost. If we do this, it will be a minimum of a 3 day hospital stay, which we don't want of course, but we may have no choice.

Mon., Oct. 19
 
Hannah is still holding her own. We are supplementing her formula with MCT oil to help her get more calories and fat. It seems to be helping her right now. Hannah has actually gained about a half a pound in the last three weeks. This is the first gain in weight since May.


Mon., Sept. 21

Still no change observed from the hormone therapy, but we were told that it could take 7 months before we would begin to see a change. Meanwhile, we have struggled off and on to get the calories in her and she has lost a bit more weight since July. However, we had no major problems in the 3 1/2 months without TPN, which is a blessing in itself.

One big prayer request: Hannah's new ped GI doctor that we liked so much recently had a stroke. At this point he is saying that he will not be practicing any more. We are praying that he will have a quick and full recovery, beyond medical explanation. His name is John Udall.

Wed., July 22

Over a month into hormone therapy and no visible change, but she has adjusted well to it so far. As far as going without TPN, still maintaining weight, but not gaining weight either. We have increased her calories recently, having already pushed the limits of what she has been able to take in. She is up to 4 cans of formula a day in addition to other items with a goal of 1200 to 1400 calories.

Wed., June 10

Hormone therapy began yesterday. Stay tuned!

Tues., June 2

Still waiting to start the hormone therapy. Hannah has been doing well without the TPN so far--no more weight loss and good energy levels.


Tues., May 26

The test mentioned in the last update revealed very low hormone levels that we will soon be treating. One of the doctors working on this is hopeful that it may help Hannah's bowel issues as well. On a separate note, Hannah's central line began leaking about a week ago and we had to have an emergency procedure to remove the line. It was beyond the point of repair. She had it in for 8 months. Now she is going to have to take in 100% of her calories via the GI tract. She has never been able to do this on her own for an extended period, but we are moving in that direction now. We cannot continue to rely on central lines due to the risk of infection and the damage to the liver and other organs. We believe that things are going to continue to improve. Thanks for the prayers.

Wed. May 13

We have an appoint. tomorrow that may involve as many as 8 lab draws. We are nervous about this for Hannah's sake. She hates needles more than anything. The hope is that we can establish certain facts related to hormone levels that may lead to a therapy that can help her on a number of levels. I hope we will be able to use the central line or an IV instead of having repeated sticks.

Wed. May 6

A little something did show up on the second lab even though Hannah never did have any other symptoms. Just to be safe we put her on a conservative antiobiotic treatment. The antiobiotics were tolerated well and Hannah is back on track. We are in consultaion with a couple of new doctors regarding other issues that I may share later. Thanks for your prayers and gifts!

Tue. April 21

Hannah's lab from last Wed tested positive for a staph infection. However, she has not had a fever for several days now. Amazingly, this happened without the treatment of antibiotics. We had another lab drawn yesterday to verify that the staph is now gone. We should know something in a couple of days. Thanks for your prayers, and for those of you who have given money gifts to the trust fund, you have been a blessing.

Wed. Aprl 15

Here we go again. Hannah has a high fever. We have ruled out strep and the flu. Although she has a runny nose and a bit of a cough, it appears that there may be an issue with a line infection again. We are going to be having labs drawn within the hour.

Tue., Mar. 31

We made it through the virus. Luke had it as well. Everyone including Hannah is back to normal and Hannah is quickly regaining the weight she had lost. This same virus a year ago would have been debilitating. She is making progress. Thanks for the prayers.

Monday Mar. 23

The last month has been one of growth and weight gain. Her weight peaked just over 35 pounds last Wednesday. Unfortunately, we have had a big setback recently with a stomach virus. It has been going through some of our friends and family. Kellie had it first in our home and despite every effort to keep Hannah away from germs, she did get it. She first vomited Saturday evening. Yesterday was not bad, but today she has had repeated episodes throughout the day. She has lost 3 or 4 pounds from the virus, but b/c she is on TPN, we can manage this a bit and keep her from dehydration. Pray that she bounces back soon.

Fri., Feb. 27

Hannah has continued to do well at home and we have no reason to believe that the antibiotic did not take care of the infection, although we are still awaiting the results of the latest blood culture. Her bowels are doing well and her weight is good. Thank you for all your prayers.

Tue., Feb. 17

Hannah was discharged yesterday from the hospital. There is no longer any sign of infection. She is getting the continued IV atibiotic therapy in the comfort of our home. She had to go off TPN for about 5 days in order to avoid feeding any bacteria that was in her line. Her bowels slowed down the first day, but then picked up. In fact, she did remarkably well in the hospital considering that she was not able to get much exercise. Thanks for the continued prayers.

Thur. Feb. 12

Hannah has a central line infection and probably has had for more than a week now. The flu diagnosis threw us off a bit, but when the fever continued, we had lab work done here in Beckley a week and a half ago and then Tuesday at Wake Forest. She is now getting IV antibiotics directly into the central line at a local hospital. We expect her to be there for a few days and then get to go home with home health coming in and administering the antibiotic. OF course if there are complications, we could be there much longer or we could have to go back to Wake Forest. Pray that we could keep things as simple as possible and that the current antibiotic therapy would take care of this.

Tue. Jan. 27

Things are going pretty well. Hannah's appointment with the endocrinologist has not revealed anything yet. We are still waiting to get results from the labwork. On a positive note, we have been able to successfully increase her GI intake without any problems. We want to continue moving in this direction. A small setback, unrelated to GI issues, is that Hannah has a case of the flu right now. It really hasn't slowed her down much.

Wed. Jan. 7

Still pluggin' along. The good news: no negative developments with the TPN. Her weight has not increased in a while, but she is maintaining. We are hoping to see the GI intake increase soon. We have an appointment with an endocrinologist Jan. 20.

Tuesday, Dec. 16

We decided to not go through with the test scheduled this month. It became very clear to us that the timing was not good for this test. It has been rescheduled for Feb, 10. Hannah is still doing well overall. Her liver enzymes are beginning to elevate some, but not to a dangerous level. We do not believe that she is quite ready to come off the TPN yet, so please pray that she will get to a point of tolerating adequate calories via GI tract soon.

Fri., Nov. 21

I have been having longer periods between updates b/c there has not been much change. Since she is doing well, this is good. We do have a prayer request about an upcoming test in December. It is one that has the potential to be quite traumatic and may not even yield any information that will help us. Please pray that we will make the right decision whether to go through with this test or not.

Sun, Nov. 10

Things are about the same. Hannah is steadily gaining weight. From her low point in August until now she has gained about eight lbs. We are thankful for the continued success of the TPN and that her bowels are still handling liquids just fine. We stayed with some friends recently who had not seen her for a couple of months. They were amazed at her remarkable improvement.

Fri., Oct. 24

Hannah had an upper GI/small bowel follow through test yesterday. We are very pleased that her transit time from stomach to end of small bowel was about four hours. Normal for a clear liquid would be three hours. When she had a similar test over a year ago, the contrast did not make it this far for 24 hours. This is obviously a major improvement. She is still on TPN for now. Her liver enzymes are remarkably low so there is no hurry at this time to get her off.

Wed. Oct. 8

Hannah continues to do well. The new pictures of the butterfly on the site were just taken a couple of days ago. Hannah has made a special connection with a butterfly that keeps visiting the flowers on our front porch. God has been using the symbol of the butterfly in various ways over the past couple of months to reassure us of Hannah's healing. Thank you for your continued praises and prayers.

Mon. Sept. 29

Hannah has had a great week overall. She continues to gain weight with the TPN and her output is still good. The bloating is not as bad. The appointment at Wake was more for the doctor's sake--to check on her progress. He was pleased with the progress but not optimistic about her long-term prognosis and ability to be able to gain weight and grow on her own. Of course he is looking at things from a medical and scientific perspective. We know that God has better plans for Hannah.

Mon., Sept. 22

Hannah continues to gain weight, with the help of the TPN. She has an appointment this Friday at Wake to check up on her progress and to discuss future plans. Her bloating continues, but so has the output. We'll try some Flagyl beginning today to help with bloating.

Fri., Sept. 12

This has been a great week for Hannah. Things did slow down considerably (they had to); however, things have kept a pretty good pace this week. We'd like to see a bit more so that we could start giving her more by mouth, but we have definitely made strides and expect more gains in the immediate future. She has probably gained back a couple of pounds from the TPN. It is difficult to know for sure how much she had lost b/c so much volume was in her gut. The lowest she weighed was 27lbs, but that was after 3 weeks of TPN. She was probably down to 25lbs at one point. We will definitely break 30lbs soon. Soon, we will be in new territory as far as her weight. The next thing we hope to see is some growth in height. She said something this evening about not wanting to go back to school b/c the other kids will be so much taller than her. I told that it was ok and that she would catch up eventually. It was the first time that she had ever verbalized to us that she notices the big discrepancy in height with kids her age. Thank you for your continued prayers. We praise God for her healing, but realize that recovery is going to be an on-going process.

Sat., Sept. 6

Praise God, we definitely have had a breakthrough. Hannah's bowels have opened up and we had over 3500 ml of stool come out today. She needed to lose most of this volume, but to avoid dehydration we are replacing this with concentrated electrolyte fluids. She is also still getting TPN so there should not be a big problem with electrolyte imbalance. Please rejoice with us and continue to praise God for her healing that we will continue to claim.

Thurs. Sept. 4

Things are actually starting to improve. We are using a larger catheter for the irrigation and the results have been good for the last day and a half. We are also seeing signs that her bowels are starting to do some of the work themselves. The more we get out, the more easily it will be for her body to take over. Hannah's lab work is looking really good, which was not the case this time last week. I have sensed that we have been really close to a breakthrough for some time. Now it appears that we are seeing it. Praise God.

Tue. Sept. 2

Still no major changes. We are going to see her pediatrician today at 4:00 p.m.

Fri., Aug. 30

No major changes since Monday. We are doing the irrigation now 2x a day. Each time we are getting more out, but it is still small in comparison with what is in her. Thank you for your continued prayers. 

Mon., Aug. 25

So far, more of the same. The bowels continue to move very slowly. We are doing a bit of irrigation to help move things along. Once we get to a certain point, I am certain that things will speed up. Pray that we get there soon. She is still extremely distended and uncomfortable.

Fri., Aug. 22

Since Wednesday evening, Hannah's bowels have been moving very slowly. This is a praise, since they were not moving at all before then. It is very slow b/c her bowels are so weak and the stool is so thick.  She is still very distended and uncomfortable, but we know that things are progressing in the right direction. We have not lost faith. This in itself is a victory for us. Thank you for your continued prayers.

Wed., Aug. 20

Hannah had exploratory surgery this morning (basically a scope was sent through her small bowel in order to determine the cause of her lack of output). To the surprise of the doctors, there was no apparent cause. It is just thick stool that does not want to go anywhere. She is very distended and uncomfortable. There is no plan at this point, except to keep her here at the hospital for a few days and try flushing things out. Even with the flushing, her bowels are going to have to have enough strength to push things back out. We are at the point that there is no quick fix medically. There really are no good long term options either. We have no where to go except to trust God. We are still praying for the manifestation of Hannah's miracle and believing that God wants her well. Please join us in praying this direction and to praise Him that He has sustained her thus far. If you feel led, I even challenge you to praise Him for her healing, which we will one day see.

Monday, Aug. 18

Hannah had surgery for a central line Saturday evening at 9:00 p.m. She is doing well and getting much needed nutrition now. Please pray that she can keep the line without infection and have it long enough to restore her to health. Also pray for the bowels to pick up again. Thirdly, we still believe as strongly as ever that Hannah is being healed and that this recent episode is going to fit in to a bigger picture of healing.

Friday, Aug. 15

We have had a very trying time. A PICC line was attempted in both arms today for Hannah and neither one worked. We have a decision to make about another more invasive option tomorrow. We appreciate your prayers.

Thursday, Aug. 14

We are heading to Wake Forest today for a scheduled appointment with Dr. Fortunato. The timing is good b/c Hannah has been struggling with what appears to be an ileus or blockage of some type in her small bowel. She has been able to get plenty of fluids; however, she is very malnurished. We are trusting God and exercising our faith throughout this situation. We know that God is holding her close to His heart and in His hand. Thank you for your prayers as we continue to believe God for His healing power to be manifest in Hannah.

Monday, July 28

Hannah has had some struggles of late, but we all as a family continue to grow in faith and confidence in His Word. I appreciate all of your prayers for all of us. God has impressed on me that Hannah is in a cocoon and will soon emerge to spread her wings and fly. God loves Hannah more than we ever could. This fact has strengthened my faith and my resolve to keep believing His promises.

Tuesday, July 15

Sorry for the delay in keeping up the prayer page. Hannah has not had any setbacks for the last month. She has gained back a little weight. We still believe that she is moving in the right direction overall. I'll update again soon.

We had a good mini-vacation in the Smokies. Our family needed the break.