Dear Family and Friends,
We want to wish you a happy and blessed holiday season and to update you on Teresa's condition. This year Teresa Has been in the hospital for ascites (which is fluid in the abdomen which in her case is caused from the lack of protein her body can't absorb from her liver).
Her first visit to the hospital in February was due to a rotavirus. Lasix helped to get the fluid off her. She did well most of the year and continually went for checkups here in Peoria and several times in Chicago. The doctors thought that maybe this was a one time episode.
Through the summer months all went well with her health. During one of our visits to Chicago, we were also told that Teresa in fact did not have Allagille's Syndrome but another syndrome called Alpha-1 Antitrysin type ZZ. This was revealed to us by blood tests and certain physical characteristics. We were actually glad to know what she really had.
Life has been good to all of us. Teresa eats up life with so much excitement. Unfortunately this Sept. the ascites returned with Teresa attempting to fight off a bout with gastroenteritis. Any illness Teresa has to fight off does a little more damage to her liver.
It is now Dec 11th. We just returned home from Chicago (where the Children's Memorial Hospital is located) after an unexpected stay for 4 days. We originally went for a specialist's visit. They were worried the fluid was in danger of infection. She has had the ascites since Sept. and also has been in and out of the hospital here in Peoria. After not being able to get the ascites off her through Lasiz without risk of dehydration, she would then be put back on an IV. Unfortunately, the IV would then bring about more ascites. It was a vicious cycle.
The doctors in Chicago said she needed a treatment of albumin which would attract the ascites into the bloodstream and then Lasix to flush the ascites into the kidneys. We had three treatments of this which the specialists remarked that it wasn't working as well as they hoped. They continued treatment until there was a sign of some success.
The specialist told us there wasn't much they could do for her but put her on the transplant list. They started the workup for her while she was hospitalized. A cardiologist was consulted because of her previous heart surgery. An EKG was performed and the test came back saying that Teresa's magnesium level was low. As a result, a magnesium drip was started. After a second EKG was done, it was a success. The cardiologist approved the procedure to be done.
During this battle of intermittent sickness, it shows her liver is slowly be taken over by cirrhosis and will not be able to keep fighting. Being on the transplant list, which we were hoping we would never have to face, makes us scared and relieved for teresa, but in the same way hopeful for help.
They sent us home last night telling us to enjoy the holidays and at the same time think about starting a benefit for her to deter the expenses incurred by a transplant. They also stressed that we should be prepared at a moment's notice to return to Chicago when they call. therefore have a bag already packed and placed in our van. So Teresa's incredible journey continues.
She is such a trooper. Sometimes she knows exactly what to do during a visit to the doctor. When the doctor's say "ahh", she sticks out her tongue. When she gets her EKG's and sonograms, she lays there quietly most of the time. When the exam is finishes, she throws them a kiss and says "yeah!". She melts our hearts everyday and know she is our strength.
We ask for your continued prayers and support. Please do not feel sorry for us. God gave this most precious gift and beautiful miracle to cherish. Thank you Jesus and help us to be good parents to her. We also ask that you pass our story along and start a prayer chain for her. We believe that God has plans for Teresa and her story will have a glorious ending to serve God's purpose. We are overwhelmed with the joy she brings us each day. We have stopped asking: "Why God?" and have started praying: "Use her and us to further show your mercy and glory".
We you all and apologize for not updating you sooner. have a Merry and Blessed Christmas and Happy New Year. We are going to celebrate and praise our Savior for our daughter, each other and all of you!
Love Tammy, Jim and Teresa
