Sorry it has been such a long time since we have posted any updates. Life is crazy!!! Amarie is doing well with her new tube in her tummy. She gets her hearing aids in two weeks...we are looking forward to the look on her face when she hears us better! She is getting bigger (slowly but surely..she is still shrimpy! She is 4 months old and can still wear newborn size). She weighed 9 pounds 8 ounces this week at her 4 month checkup. She is keeping us busy with all of her doctor visits (we have 8 appointments this month and its about like that every month). Its a crazy life being her full time mom/nurse/secretary! Plus, life has been a little crazy this week because Jason has swine flu. He has been out of commission since monday and has to stay away from everyone for another 48 hours. He is doing much better now but had a really high fever. The doctors put us all on tamiflu so I'm praying that amarie won't get sick!

Another update is about the genetic testing. A few months ago Amarie had genetic testing sent to Johns Hopkins to confirm her Treacher Collins. Well...we have learned to expect the unexpected with her! The geneticist knows that she has treacher collins based on her features but the testing was a mystery. Johns Hopkins is stumped. They have never seen the kind of mutation that she has before. So they did genetic testing on us and it turns out that I am a carrier. So we were really disappointed because that will make having more biological kids difficult. We have a strong chance of having another child with treacher collins. While we are so in love with our beautiful amarie, we don't think we could handle her and a child that could be more severe (complete deafness or trach dependent). The geneticist offered us several options for future pregnancies: an amniocentesis to see if that baby had treacher collins so if we wanted to terminate the pregnancy; to undergo genetic testing on multiple fertilized embryos and then implant the ones without the mutation; or to use an egg donor. Believing that life is precious and that it begins at conception we don't want to go with the first two options. We will probably look into adoption. We are trusting God's plan for our lives and know that He knows exactly who is supposed to be in our family. We are relying on Him every day because there is no way we can do any of this on our own! I am going to have to cut back my hours at work to take care of Amarie so we are excited to see how God provides. Its so funny that after we have seen God's faithfulness to us over and over again that last few months I forget that and still get scared. God says to "test him and see if he will not throw open the floodgates of heaven and pour out so much blessing that you will not have room for it."
Sorry this was so much to read..I had a lot to fill everyone in on! Love, Corin

McKenna loved visiting her cousin Amarie at the hospital. The funny thing about this video is that she had been eating Cheetos before she was rubbing the baby's head so Amarie had an orange head! :) Amarie was very alert and curious.

Amarie did great! We are so relieved that her surgery went well (the doctors are too...they said they were all holding their breath when they were intubating her). She had no complications and was able to come right off of the ventilator...which we were so happy about because that meant we were able to avoid a repeat trip to the ICU. It is much better having the feeding tube right in her belly instead of being taped to her face and going down her nose. Plus its more long term and permanent method (she can't pull it out as easily!). We are at our home away from home, Scottish Rite, until Thursday. Thanks for all of the encouragement! :D

Corin

Yet another surgery

Well Amarie is under the knife once again. She is getting a feeding tube put into her belly today. This procedure only last around 8 minutes so it should be a little less stressful. They will observe her for at least one night, maybe two if there are no unforeseen complications. We are of course nervous and concerned but we trust that God has her in his hands and will take good care of her. Thank you for all your prayers and kind words. We will post another update when she gets out of surgery.

-Jason Orean

Amarie has had several follow up appointments this week that have gone really well. We went to the craniofacial doctor on Tuesday and they took out the distractors (the metal pins sticking out of her head). We are excited about having her little "antenna" out :) We also went to the hematologist this week (Scottish Rite is our home away from home!). They repeated the CT scan of her brain and the blood clot/bleeding is gone!!! We are thanking God for her improvement. She had some blood work done to see if she has a clotting disorder before she gets another surgery in two weeks (to put the feeding tube in her stomach). Poor little thing has been picked on a lot this week between getting her shots, blood work, CT scan, and putting her feeding tube back down after it came out again :( She's going to be a tough cookie! She is so alert now and loves to look around. Such a cutie!

Swallow study (other update is below the pics)

We had the swallow study yesterday and it went pretty well! We were pleasantly surprised :) She aspirated only once (where the liquid went down her airway instead of into her stomach) when they were using a faster flow nipple. Using the slow flow nipple she had improved a lot since the last swallow study. Yay!! She still needs a lot of practice and time to get it down but we are encouraged that there was improvement. We will have a speech therapist (they also work with swallowing) that will be working with her through the Babies Can't Wait program so it will be great to see how much she will improve with lots of practice. Also, the therapist that did her swallow study said that she thinks Amarie will do great with baby food since it is thicker so she will be able to eat that once she gets old enough. She still needs to have the surgery to put in the G tube (tube in her stomach instead of going down her nose) since it will take time for her to work up to get her full feedings from the bottle. The G tube will be more comfortable for her (and it will be farther away from her sneaky hands!). Her surgery (if we can get the ok from the doctors following her blood clot and brain bleed) will be June 22nd and we will probably spend a few days in the hospital..so we hope she tends be a little complicated!! :)

My favorite spot...mom and dad's bed