Here is a message from Erik and Dawn:
"We have had a pretty busy week so far, and it has just begun.
Analise saw a geneticist yesterday at Kaiser Riverside. We kind of know what the doctors are going to say each time we see someone, but our thinking is, the more the better. We try to soak in everything we hear from all of these different doctors and paint the picture from all of the information.
Dr. Ahmed said that Analise was the subject of a discussion that all of the Kaiser geneticists in California had in a recent meeting. Dr. Tiller (geneticist from Kaiser Sunset) took pictures while she was in the NICU and took them to the discussion. Dr. Ahmed said that Analise is already very well known with California doctors. He also said that if Analise would have spent one more day in the Riverside hospital, he would have diagnosed her with arthrogryposis, amyoplasia also. He has seen a few cases of this condition while working at Kaiser. As of the question of arthrogryposis being genetic, his answer was...."I don't know." He said it is something that we probably won't know for several years until the genome project is completed. We often think of genetics as being hereditary, however, this is not what he means. He says it could be related to a specific gene or marker (or group of either) that do affect this condition. Dr. Hurley agreed with this statement as well. He said her creatinine levels were very high (over 600) on her birth day and normal is around 80-150 (I think, hard to remember everything, and yes, I know, I should probably write it down). He will continue to monitor these levels to make sure there isn't any kind of muscle breakdowns.
Today we received more good news about Philadelphia. My mom, Marti, and my stepfather, Rich, have been working very hard for us and Analise. They worked out a deal, with the help of Tracey Schalk (a 23 year old AMCer), for Dawn, Analise and me to fly to Philadelphia for $50 roundtrip. INCREDIBLE!! Thank you Mom, Rich, and Tracey.
We visited Kaiser Fontana today for a hip ultrasound and changing of the casts. We were very happy to learn that her hips were not dislocated. That was great news considering many kids with AMC have dislocated hips. We also watched Analise get her casts taken off today.
Now let me just say, if you have never seen casts being taken off, it is quite scary. They take a vibrating circular saw and cut down the outside and inside parts of the cast. The cast is very thin because they don't want her legs to have much movement. So it takes a very skilled person to do so. We were lucky and got a veteran named Tony who has been working for 30 years in this field and did an incredible job. I don't think Dawn or I were able to breathe until he was finished, but it went fine.
Analise's feet looked great and Dr. Hurley agreed and said she had great progress. They recasted her legs, all the way up to her groin again. Dr. Hurley will be out next week so Analise will have these casts on for almost 2 weeks.
I had several questions again for Dr. Hurley and she answered them. I asked her about the Ponseti method and how she learned it. She said she actually went to a conference and learned it from Dr. Ponseti himself. He originally didn't think his method would work on AMCers, but later changed his thinking. I asked about plaster vs. fiberglass casts. She said, they actually put on the plaster cast first and sometimes the plaster can be very tempermental. They then put the fiberglass on the outside to protect the plaster from getting wet. I also asked her about her knowledge of arthrogryposis and further studying of the subject. She said that she does look for new information on the subject, but that there isn't really any new information out there.
I truly think she is a very knowledgable doctor and really cares about the kids, but does not want to give false hope. I think we will meet many different doctors along this journey, and they will all have different personalities, ways of communicating, and knowledge of this condition, but the main people that will be making Analise functional, optimal, and successful in life will be her parents, family, and friends. We will be her biggest advocates and with our positive thoughts, SHE WILL SUCCEED.
A big shout out to all of Dawn's friends at work for all of the food, cards, and donations. THANK YOU!!!
We hope everything is going well with everyone. Don't be afraid to call, email, or text. Even though we are going through all of this, doesn't mean that we have stopped caring about all of our family and friends and their lives. The same way you all have supported us, we are there to support you guys in any way you need.
Have a great week!
Erik, Dawn, Kaley, Kyle, Kassandra, and Analise"
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| Looking good... |
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| Remember?? This picture was taken on Day 28 |
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| Day 37-Second set of casts |
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