Hannah with chick April 2010

Tuesday, Nov. 15

Hannah has been steadily gaining weight, especially within the last week. She is up about five pounds from her low point. She has five more to go to catch up with her peak weight earlier in the summer. Pray that her central line holds up and that she gets no infections. Also pray for our upcoming GI appointments.

Wednesday, Oct. 26

Hannah was discharged today after ten days in the hospital. Her labs look good and she is now getting TPN at home. We have a long way to go, but I believe that the road to recovery has begun. She has lost a total of 8 pounds since the beginning of September, which is more than 15% of her body weight. Drastic. Now a reasonable goal with TPN is to get back to where we were (or possibly beyond) by Christmas. This is likely to happen as long as she can keep her line in during this time.


Sunday, Oct. 23

Things were going well for a while, but then Hannah's bowels stopped again and we had to go back to the hospital here in Beckley. Hannah was on IV fluids Monday through Saturday, then periferal TPN Saturday and Sunday. This morning, Hannah had a central line put in so that she can receive TPN for a longer period of time. There is a new pediatric surgeon here. He did a good job as far as we can tell. It seems that when Hannah gets really down in weight like she did with this virus, it is so hard for her body to bounce back without the help of TPN. We have a couple of appointments in November with two different GI doctors to discuss Hannah issues and long term plans.

Tuesday, Oct. 11

The past couple of weeks have been really trying in a number of ways, but we continue to see God's hand on our lives. Despite a couple of setbacks, Hannah is doing better. She ended up not getting a central line despite the lack of nutrition that she had been able to get. She had lost a total of 7 pounds since the stomach virus hit her near the beginning of September. The doctor in Huntington that was assigned to her once admitted through the ER had a very different way of seeing things and was not helpful at all. In fact, our experience there set us back a bit; however, everything is looking better right now. She has regained a couple of pounds. We have a long way to go, but I believe that we can do it. We had a really good appointment with her endocrinologist last week. He has a plan that he believes will help her nutritional situation. We are going to follow his advice closely and see how things go. We are also going to be seeing a new pediatric GI doctor next month.

Sunday, Sept. 25

We were discharged on Friday after Hannah's labs returned to normal. Yet, she was not able to get sufficient nutrition on her own so we went to the ER at Cabell Huntington. We are hoping that she can get a central line within the next two days. She did fairly well today. Her labs still look good, but she is having other issues, especially in the area of nutrition.

Thursday, Sept. 22, 12:30am

Hannah has been in the hospital since Monday getting IV fluids. She was very dehydrated. She had not been having a good month, but it still took us be surprise, at least how quickly she went downhill. Her labs are looking better and she will probably get to come home Friday. That is the plan at least. Some of that will depend on how she does today. Long term, we have to consider the possibility of TPN again, but first we will give her a chance to bounce back and pick up weight on her own. 

Sat., Sept. 3
 
Hannah has had a pretty good summer. No big changes. She is still getting a bit taller. The weight has been steady until the last week or so. A virus has been going around the house. First with me, then Kellie, then Hannah, then me and Hannah again. She vomited last night. I did this morning. I hope we can get back on track soon.

Wed., July 26

Hannah has been holding her own, overall, without the TPN. She has struggled some after eating solids. For example, she ate some chicken with the skin (two chicken wings) and struggled for about ten days to get back on track. She simply cannot afford to do this, yet it is very difficult for her to not eat like the rest of us. She has since bounced back and her weight is steady. Whenever she gets off track, she is very distended, and we have to work with her around the clock to keep her comfortable and to help her in other ways. When she is doing better, we still have to watch her around the clock to make sure that she does not go too far with certain things that she likes to have.

On a very positive note, Hannah reached a big milestone a couple of weeks ago--she learned to swim! This would not have happened with the central line, because she was not allowed to be submerged in the water. She has been wanting to go to the pool just about every day.

Mon., June 27

We returned from Huntington today. Everything is ok with Hannah right now. The line did not break. It all came out yesterday. No one was able to replace the line today, so we are going to do a trial for a few weeks to see how she does without the line. Pray that all goes well. We are thankful that today's trip was so smooth and uneventful.

Sun., June 26

Hannah's central line came out this morning. Actually it appears that it broke off and that part of it is still in her body. The part inside her should be attached to a cuff, which is relatively harmless, but is still needs to come out. Should the part of the line that is attached to the cuff break off, it would go into her heart and be very serious. We called the doctor who put this particular line in and spoke with him this morning. It just so happens that he is going to be leaving town tomorrow afternoon, but he said that he would be able to look at it in the morning and have it removed. Pray that all goes well. It should be simple, but things rarely are simple with Hannah.

Sat., June 5

Hannah is still doing well. Her weight gain has stopped for now, but she is growing taller and is still enjoying life. So far, we have not had any problems with the TPN or central line. Thank you for your continued prayers for her protection, healing, and growth.

Wed., April 6

No significant updates. Hannah is still doing well and enjoying life. She has so much energy and vitality right now. I wish that we could see this when she is not on TPN. I am thankful that she is having good days. It seems that her vertical growth is moving again. She grew quickly for about 9 months when she started increlex. Then came the virus and she lost weight and stopped growing vertically. Now she is at an all time high in weight and we made another mark on her growth chart last week.

Wed, March 30

Still on TPN. Still doing well overall. Her weight is as high as ever. Her weekly lab draws that we have to do while on TPN have been looking pretty good so far. She has been struggling with a few minor issues otherwise. I'll say more about these if they develop into something worth taking note of. Keep praying for the insurance company and other related financial issues that we are having trouble with to get resolved.

Thurs., March 3, 2011

Since we have been home, Hannah has been getting TPN. She has had no problems with the line, and it is helping her to gain her weight back. I hope we can keep it in for a long time and that her bowels will strengthen as a result of this therapy. With central lines come risks and we do not take these lightly. Pray that the line can stay free of infection during the entire time we use it. Also pray that the TPN does not have a negative effect on her liver. The other big thing we are dealing with is trying to get insurance to pay for this. They have been very difficult to work with for this, even though it is life saving treatment. We have had to pay a lot out of pocket for this over the years. TPN therapy typically runs close to 15K per month. That's right, 15,000. That is why we really need this to be paid for. It is stuff like that that people need to get insurance in the first place.

Sat. Feb. 19
We came home yesterday and Hannah got her first bag of TPN beginning at 7:00 last night. It ran until about noon today. She is doing really well. The site is still sore for her, but it should get better. It looks good. She lost a lot of ground that she had gained over the past year, but I think that we are going to see some big gains this year. I feel that she will catch up within a month, perhaps sooner. Time will tell. Keep praying for her. Two of the most important things now are that she can avoid catching any other viruses and that we can keep her line from getting an infection.

Thursday, 7:00 p.m.

Very long day at the hospital. There were some scheduling issues and emergencies that got bumped ahead of Hannah. However, we are back in the hotel room resting, Hannah is with us, and she has a central line. We will not begin the TPN until tomorrow evening, but we are very thankful that the surgery went well. She was quite cranky coming out of surgery from the anesthesia and the fact that she had not had anything to eat or drink for more than 16 hours. She is a very spirited little girl and fights hard. She could not wait to leave the hospital and kept wanting to walk around, even though she was very weak. The site is sore. The Dr. tunneled the catheter into her neck, but the entry point on her skin is on her chest so it will be concealed with clothing. The Dr. feels that the line is in a really good place and that it will serve her well for some time.

Wed, pm, Feb. 16

Hannah is scheduled to have a central line put in at 10:00am tomorrow in Huntington. It was a surprise to us to be able to do it this quickly, but if all goes well, she will be getting TPN by Friday evening. She really needs the extra nutritional support. She has been through so much trauma this year. Pray that this will be the start of something better for her and that all goes smoothly tomorrow and beyond.

Mon. Feb. 14

Every day is different--some better than others. But she still has no consistency and is still not making consistent gains. Due to a scheduling mix up we did not get to see the GI Dr we thought we would see. Instead, we saw a surgeon. He evaluated her. Later today Hannah will have an ultrasound to locate her veins and to be able to have a better chance at getting a good vein. She is scheduled next Tuesday to get the central line. Dr. Beaver will do the procedure. She is a very experienced pediatric surgeon. Pray that Hannah does well between now and then.

Sat. Feb. 12

Doing somewhat better today, although there are still issues. MOnday morning we go to Huntington to meet with a new GI doctor and then we may follow that up with a pediatric surgeon for a central line. More info to come soon.

Mon., Feb. 7

Hannah still needs serious prayer. We are not making any significant progress right now. She is generally weak and her motility is still not consistent. Even when it is ok, the bacteria in her gut is making things really difficult--lots of discomfort and gas, and less room for the nutrients she really needs. We are treating that with an antibiotic and probiotic at the same time and we will continue the probiotic once the antibiotic round is complete.

Sat., Jan. 29

Things are ok right now. Not great, not bad. After the initial weight gain, she is not gaining, but it has been less than a week since we got home. I hope people do not stop praying. While it is an answer to prayer that we are home and she is not suffering in a big way like she was, we have daily issues to deal with and have had for many years. We have learned a lot, but there is still more to learn. Also, we need Hannah to do a better job cooperating with her diet. Sometimes we have a setback b/c of her diet fluctuating too much. She is 9 years old now and is able to have some measure of control over her diet.  

Mon., Jan. 24

We are now home. Hannah's PICC line began to infiltrate yesterday, so it was pulled and we were discharged. She was able to get nearly three full days of TPN, helping her to bounce back, and her bowels are working well now. Thanks you for all of your prayers. I know that she is doing well now. She does need to put some weight on, but already she looks much healthier. Since we arrived home, it seems that she is gaining even more weight in the legs.

Fri., Jan. 21

Hannah has been getting TPN now since last night through the PICC line. Becuse it did not go in far enough, she cannot get full strength TPN; however, she is getting some nutrition and she is doing so much better in other areas so we can also give her formula as well. We have made it through the most difficult part of this process; all in all she lost 8 lbs in 19 days. This may not sound like a lot to most of us, but this amounted to over 20% of her body weight. She is very frail, but on the mend. Now pray that there are no complications with her PICC line and that she recovers her weight quickly.

Wed., Jan. 19, 9:45 pm

Shortly after my last post, the very issue that has caused all of these problems began to resolve itself. Hannah's bowels have opened up! In fact, things are moving so quickly now that we would be seeing some dehydration issues, if it were not for the fact that she is already in a hospital and hooked up to an IV. We can also start giving her more by mouth again. Thank you all for your prayers. Don't stop b/c she has a lot of catching up to do and we are planning to stay for a few days to try the peripheral TPN.

Wed., Jan. 19

Well, Hannah's PICC line is in, but unfortuantely, it did not go far enough in for long term therapy. It needs to be close to the heart, at least to the subclavian vein, and it stopped just short of it. The lady who put it in is an expert and gave it four attempts. It was just not meant to be. On a more positive note, it is possible for her to get peripheral TPN, which is a diluted form of TPN. It will not give her everything she needs, but it will give her a huge boost. There is not garantee that the PICC will even work for that but we spoke with her GI doctor (Glock) and a surgeon (Charles Turner) and they are both optimistic about it. The surgeon is going to do a physical exam tomorrow to study her bowels. He would be the one doing the next surgery if she needs it, but no decisions have been made yet.

Tuesday, Jan. 18, 7:45 pm

We are now at Wake. Hannah is scheduled to undergo surgery  tomorrow to have a PICC line put in for nutritional support at 1:00 pm. Please pray that the procedure goes well without complications. She desperately needs protein and fat. She has not had a substantial meal since New Years Eve. She has been living on IV fluids since Saturday.

Tuesday, Jan. 18, 1:30 am

Hannah is still struggling. We are transferring to Wake Forest later today and will likely be getting her on TPN with a central line or PICC line shortly.

Sunday, Jan. 16

No siginificant changes. Hannah is at the hospital now getting IV fluids and we are still awaiting her bowels to open up and allow passage of stool again.

Friday, Jan. 14, 1:00 am.

These are the most difficult times, when it seems that God is not listening, or if He is, that He is choosing not to respond. However, I know that He is there and is responding. We do not see it yet in Hannah. She did show signs of improvement a few days ago, and was getting better, and then things went downhill again. It still seems to be the after effects of the virus. We just need for her to have some output soon. I will post again soon. 

Wed. Jan. 5, 2011

Just one day after my last post, Hannah was struck with a stomach virus. She was the last in the family to get it and it has hit her pretty hard. We think that she is over the virus now, but her bowels are not moving at all right now. The procedures we normally use to help that issue along are not working. Please pray for her and us during this trial. She really needs nutrition now. Fortunately, she is getting clear fluids, but she has lost a lot of weight.

Thurs, Dec. 30, 2010

Hannah is back on track in terms of growing vertically again. We increased the dose of one of her hormones and it made a significant difference. We are confused again because we are getting letters from United still saying that they will not cover the cost of the medications even though they paid for it recently. I guess we may find out something when we go to reorder again. Hannah has now grown almost three inches since she started the increlex in March. She has also gained about 8 lbs during this time. This is the most significant growth period she has had since she was one year old. She turned nine two days ago.


Sat., Nov. 27

Insurance is now paying for both medications! Who knows how long that will last, but we are very thankful that they are paying. It was a long appeal process and we spent quite a bit out of pocket during that time and Hannah had some complications as well. Just before insurance decided to pay, we were in the process of trying to get the manufacturer to send us a free month's supply when what we though would be a couple of days turned into several weeks. Because of that, Hannah went without the increlex for 3 1/2 weeks. The difference was dramatic. She stopped growing for two whole months. She also dropped four pounds. We have been back on the medication now for about 6 weeks and just a few days ago, we noticed her putting a bit of weight back on and she appears to be growing again. I'll try to make another update on growth after the December measurement.

Hannah did go off

Tuesday, Oct. 26

Don't think that infrequent updates is because of of nothing going on. We have been busy still trying to get something from insurance for Hannah. Something is in the works right now that may help her, but I'll wait to share once we know something for sure. She did go off the medication for about two to three weeks and she went downhill rather quickly. She is back on and doing much better again.

Friday, Sept. 17

We are still working on the appeal process. We also found out that we supposedly owe 15K to a local pharmacy for TPN that we used two years ago. The pharmacy had been battling with United during this time to get payment and United is refusing. I know that God will provide for us, but it is frustrating sometimes dealing with these things when our attention should be focused on taking care of Hannah.

She is still growing. Add another centimeter to the August measurement. This makes 6 consecutive months of vertical growth. We have not seen this in Hannah since she was 12 months old. This is truly an answer to prayer. We credit God first, but we also acknowledge the role that increlex is playing in her growth. Keep praying that United will come through and pay what they are supposed to pay. 

Monday, Aug. 23

Still waiting to hear from insurance. In the mean time, we are going to have to order another month's supply of increlex, since we are nearing the end of what we have left. We still need people to pray for the appeal to go through with United. We also need God to provide for the $2000 cost for the month's supply of medication. Hannah is growing at a rate we have never seen before. She is still just the size of a 4 year old. At the age of 8, she can still catch up, but it will take years of therapy. Going off the medication is simply not an option for us right now.

Monday, Aug. 9

Still growing! The problem now is still with insurance. United Healthcare denied the first appeal that came from the physician. We are working on the 2nd level of appeal. The problem is that we are running out of the medication soon and will be forced to pay another $2000 if the 2nd appeal is not accepted in time. Her weight is at an all time high and she has had a really good summer overall in terms of how she has felt. Pray for insurance to do what they are supposed to do.

Friday, July 16

It has been a pretty good month overall. Hannah is keeping her weight on after the initial gain of 3-4 pounds (starting in April with the new growth hormone). She has gained another pound since then and is still growing a bit in height. This is so encouraging. It is the first time since she was two years old that she has gained this kind of weight without the help of TPN/central line. The bad news is that the insurace company is telling us that she does not need this medication. Because it is a new drug that is not mass produces as of yet, the cost is $2000.00 a month. No wonder the insurance company does not think that she needs it! Anyway, we were forced to pay out of pocket to keep it going for a month while we go through the appeal process. This is the only medical treatment that we have tried that has helped her grow in years. How can the insurance company know more than us and the doctors about what she needs and what works for her? Pray that this appeal will go through and be accepted and that the insurance company will do what is in Hannah's best interst, not theirs. 

Tue., June 15

Hannah has made significant improvements over the past two months. It has now been almost two months since we started the new hormone therapy and she has put on some weight and even grown a little bit vertically. We have learned that we still need a mostly liquid diet and she still has distention, but we are encouraged at her growth, as well as her more positive mood and energy.

Fri., May 14

The equipment that the dr wanted is not available right now in Beckley. We are doing research to find out exactly what was used before so it can be ordered. In the mean time, Hannah is doing very well. She has been on her new growth hormone now for about three weeks.

Wed. Apr. 28

Hannah's procedure to have a central line inserted was postponed due to the doctor not being comfotable using the equipment he had on such a small patient. We had a good consultation and feel comfortable with him. He seems very competent and caring. He said that he may be able to do it as early as next week. I will update the site once I know something. Thanks for all your prayers and thank you to those who have given to Hannah's trust fund recently. We have had several people give over the past two weeks.

Sat. Apr. 24, 2010

Two important updates: We started the new hormone Thursday evening. The bad news--it requires a needle, twice a day. The good news--Hannah has been cooperative.

The other update is we have a 10:00 a.m. Wed appointment to have a local surgeon place a central line in her for TPN. This could be a big step to her progress when combined with the hormone. We shall see. Be in prayer.

Wed. April 14, 2010

Hannah's temperature is back to normal and the swelling in her arm is going down. Thank you for your prayers. We still plan to move forward to schedule a procedure to have a central line port put in, but we also have faith in God that we may not need it. Keep praying.

Tue. April 13

Hannah's PICC line infiltrated yesterday and we had to pull it. She has had a fever since yesterday. Her arm is very swollen with fluids. We had labs drawn last night to rule out infection and we saw her pediatrician today. Hannah is doing well overall. She is handling her formula feeds well. We will look at the possibility of getting a longer term port central line in the near future.

Sat. April 10

PICC line is in. We are home. Hannah got her first bag od TPN last night. She is doing well, although the site is sore. Pray that we can keep this in a long time without infections.

Tue., April 6

Hannah is doing better again, but the cycles have been hard enough on her that we feel we have no choice now but to move forward with trying to get her TPN for a while. We are going to attempt to have a PICC line placed Thursday. Her veins are very thin and although we have had success before with a PICC line, on other occasions we have had difficulty. Pray that first of all, we can get the line in with ease. The less drama the better. Secondly, pray that we can get good use out of it for a sustained period of time so that Hannah can quickly gain weight. Thirdly, pray that this is just the boost she needs so that everything else can fall into place that needs to for her growth.

Tue., March 30

Sometimes things move ever so slowly in the medical community. We are still waiting on everything to be completed and approved so Hannah can start the new hormone therapy. In the mean time, things have been up and down. Shortly after my last post, things were looking really well (Hannah was gaining weight), and then Hannah along with the rest of us in the family got a bad virus. She lost weight, that she really could not afford to lose, but things began looking better again, she picked up some weight and things were running smoothly. Then a few days ago, she ate some solids that she should not have had. She did it right in front of us, even though we did not see it. As of last night, her bowels have come to a stop. We are trying to get in touch with her doctor right now. Please be in prayer for our wisdom as well as her well being.

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, 2009

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