Wednesday, January 5, 2011

I seem to have never ending questions as from day to day, Faith's situation changes.

Here is the run down of my daughter's issues just to refresh your memory.

Faith was adopted from Vietnam at the age of 5 and is now nine. She has a hereditary blood disease which requires blood transfusions called Beta Thalassemia Major. She received blood transfusions once a month in Vietnam, just enough to basically keep her alive.They did the best they could, which wasn't much.

Faith has gradually had to get more frequent transfusions. We are now up to every other Friday, and we are working hard to keep her pre-transfusion level around 10 or so. Lately, on her dose of 500 mg of Ex-Jade, her ferritin continues to rise again, possibly because of the increased blood transfusions. Her ferritin is now around 900.

Faith does still have her spleen, although many children with Beta Thalassemia Major have had theirs removed and likely, she will have to too.

Faith has a porta cath placed in the left side of her chest and that has been there since 01/2007.

Faith has hearing issues. She has had two sets of tubes and we were then told that Faith has a bone malformation in her inner ears and the only help would be hearing aids and an fm technology system to use at school and while out in noisy places.

Faith also has reactive hypoglycemia, meaning we feed her every 3 hours at least, she has a diet of vegetables, lean meats, and whole grains,,,and NO NO NO SUGAR!

Lately, and for the past 2 years, nothing is working for Faith as she continues to struggle in school and speaks in broken language. This is NOT an ESL issue. She cannot find the words, doesnt understand concepts such as cause and effect and so on.

Faith has been tested and it has been determined that she has a low iq, (69), which classifies her as mildly mentally retarded. We have gone through many cognitive and developmental tests to determine what is best for Faith and we are with not many more answers than what we began with.

It has been determined that Faith has auditory, visual, and central processing disorders. She may hear something, see something, be involved in an activity, yet her brain doesn't know how to respond or react to the information she is taking in. We were then referred by Dr Hardy in the Behavioral clinic at Children's Mercy to the Speech and language clinic for a complete language evaluation. This appt date is set for January 18th, 2011.

We were also sent to the Midwest Ear Institute to see Dr. Sarah King and beginning APD therapy.

It was also determined by Dr. Hardy that a strict IEP needs to be followed for Faith at school with preferential seating, less work, adaptions on the work given, and so on. Also, retaining her was determined to not be a beneficial. Faith is in a small private school. Her classroom consists of 17 students with 1st and 2nd grade combined.

Faith has started APD therapy and we will continue with this once a week for 14 weeks. Dr. King said she is hopeful that we will see some improvement in Faith, but does not know how much as Faith's case and medical needs are so unique.

When we went the past 2 weeks to APD therapy, Faith had perfect hearing and the dr said that her hearing aids are not beneficial at this time and to discontinue using them.

This week when we went back, Faith had significant hearing loss in both ears, more so in the left ear though.

The doctor stopped the therapy to consult me on her findings. She said that she could not see much in Faith's ear due to scar tissue, but she determined that her eardrum was not moving at all in either ear.

She is insure if Faith now has fluid build up or if she has a bony growth in her ear, causing hearing loss. She told us that Faith now needs to wear her hearing aids again.

She asked, "Have you ever considered tubes?" I almost fell out of the chair because Faith has had 2 sets, and it was determined that they would not work for her, thus the fitting of her hearing aids. I said, What do we do? She had no answers.

She is referring us back to Children's Mercy hospital to consult the ENT team there. I am making that appt today.

She also will be referring us to see a Neuro-Otologist to look into Faith's hearing issues, along with neuro disorders and so forth that may involve the ear.

I have asked Faith's hematologist on more than one occasion to refer us to a genetics doctor, so that we may somehow find out some missing pieces of Faith's puzzle. I was told that we didn't need to see a geneticist.

I am not leaving the life of my child in someone else's hands when I feel in my gut that I should persue this, so that we may find answers as we obviously have NO medical history on her. Due to being adopted internationally, little info is given on the adopted child, because little is known.

I feel that I should do everything in my power to find some..............any.......... answers for Faith so that when she gets to the age of child-bearing years, she will have all the information she needs to determine if having biological children is the right thing for her and her husband.

I think I would be doing her an injustice if I did not seek and find for her. So, I am also making an appointment for her to see a geneticist at Children's Mercy Hospital today.

I have ALWAYS felt like I am on an island by myself when it comes to finding answers for Faith. There has been no book, or guide instructing me what to do next, or when to do this or that.

This is frustrating as I feel we are not much farther in our investigation than we were 2, 3, 4 years ago.

I am looking for resources, answers, suggestions, and prayers that we make the right decisions and choices for my daughter.

Please give me input.....advice, support,,,,,,anything that you feel may be of good use to our family.

Thank you,

Bambi Rockhold