Hannah with chick April 2010

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.