Hello everyone Mary Grace is doing great! We are still watching her very closely! She has had some small breathing spells! She is scheduled to have her
lung Function test on April 30 at Children's in New Orleans! Thanks so much for your prayers! We are so blessed to have friends and family like we do!
love,
Joe, Katie and Mary Grace

Hello All!
Mary Grace has had all of her test and we have received the results. After this long road of uncertainty, Mary Grace's problems is a result of acid reflux. MG has been aspirating acid into her lungs periodically. There is some damage to her lungs because of it but it will not cause any long term issues. She may have to have surgery to prevent the aspirating of acid but they are not certain of this right now. MG's doctors said for Joe and Katie to take her home and enjoy her. She is a perfect normal little girl. She will have some future doctors appointment to determine if she will need the surgery in the future. Thank you for all of your prayers and concern. They really did help Katie and Joe through this very scary and stressful time. Thank goodness that Mary Grace's lung issues were not as major as we once thought. The doctors explained to us that they had to test for everything to find out what was causing the problem. Thanks again for the continued support. Life is good but it is even better with great family and friends!

Janna

Mary Grace went to her neurologist appointment Tuesday. Katie really like the doctor and felt very comfortable with her. The neurologist has scheduled to run a few test next week on Mary Grace to rule out any neurological problems. The doctor told Katie that this is routine and these are the first test the run on many patients. MG will have a EKG on Tuesday and a MRI on Wednesday. MG will have to be put to sleep for the MRI and these test will be run at either Woman's Hospital or The Lake. MG is doing pretty good. She is not having to rely on oxygen as often as before. We are still waiting on the lung function test that will take place in April. The neurologist did explain to Katie that when you deal with pediatrics that it is a long process. The doctors have to run every test possibly to come to a diagnosis. The problem is that the doctors have to go by what the parents describe to them as symptoms. They don't have a patient who can tell them exactly how they are feeling or what is going on. Katie did relax a bit with hearing that information. The doctors do keep saying that MG is a unique case but they will get to a diagnosis. Katie was also told that MG is seeing the best doctors in this area. They are all highly respected in their field. Please continue to keep Katie, Joe and Mary Grace in your prayers. Sometimes the hardest thing is having patience and that is all they can do for now.

Janna

Mary Grace had her doctors appointment yesterday with Dr. Thomas (pediatric pulmonary specialist in BR). They were there for a long time. Dr. Thomas really examined MG well and watched her play and interact with him inside and outside. Katie said that Dr. Thomas has a gift with children. MG never knew he was examining her. He has a special and unique way of interacting with children and it was very heart warming for Katie and Joe. So, the good news is that the test Dr. Thomas wanted MG to have was a sleep study. They just happened to have a cancellation yesterday and MG luckily had the test last night. Katie stayed with her in the room all night. They are home now and sleeping. It will take up to two weeks before they receive the results back. Dr. Thomas is still not letting go of the acid reflux aspirating into MG's lungs. He still thinks this might be involved. MG is adjusting to the oxygen at home and so is Katie and Joe. Once again, hopefully we are on the right track to getting closer to putting the puzzle together for MG. She will be seeing a neurologist Tuesday at BR Clinic. Dr. Bankston ( MG's pediatrician) recommended this doctor for Katie and Joe. Dr. Thomas wants a neurologist to examine MG to get her opinion of what is going on. He doesn't think there is a neurological issue, but he wants to cover all of the bases. I will update again as I get more information from Katie and Joe. Please continue praying for our baby girl. Katie and Joe appreciate all the support they have received throughout this scary experience.

Mary Grace went to see Dr. Edell (pediatric pulmonary specialist in NO) yesterday at Children's Hospital in New Orleans. It was just a doctors appointment to schedule the test MG will need to move this process forward. She will have the long awaited lung function test in April. Once again we are waiting on scheduling issues. MG will see Dr. Thomas (pediatric pulmonary specialist in BR) this Thursday and he has to schedule a test for her also. The lung function test can only be performed at Children's Hospital and the test with Dr. Thomas can only be performed in BR at The Lake. So, we are left a little frustrated and running out of patience. But, the good thing is the doctors say that MG has the band aid to help assist her with the lung issues for now which is the oxygen while we wait for these test. Dr. Edell and Dr. Thomas say that these two test will tell them both what they need to know to diagnose MG. She is doing pretty good. Katie and Joe have learned how to manage MG's oxygen pretty well. They could easily put MD behind their name when it comes to the lungs. I will update the blog again after her appointment with Dr. Thomas Thursday. Please continue to pray for Katie, Joe and Mary Grace. I do think we are closer to finding out a diagnosis for MG. The doctors keep calling her a pulmonary puzzle, but she is OUR pulmonary puzzle and we will not stop until we put the pieces together.

Janna

Just an update about MG! She is doing better. She is getting over the pneumonia and that seems to be improving at a great pace. She is on oxygen at night and sometimes periodically throughout the day. Katie watches her very close and calls the doctor with any changes. Katie says she "hangs out" at the oxygen level that makes her nervous. The level is not where we would like for it to be but it is not low enough for a hospital visit either. We are still waiting on the doctors to make some decisions when they are going forward with the test MG needs. Katie and Joe are hanging in there also. They are patiently waiting and if anybody knows Katie she is not very good at doing that. Please continue to pray for MG and her mommy and daddy. Hopefully soon we will have some more information.

Janna

Mary Grace is feeling a little better. Her mommy said she is a little grumpy today. They are still waiting for the pneumonia to improve and then the doctor will schedule some more test. She will be going to Children's Hospital in New Orleans to have the lung function test as soon as she can. Katie and Joe wanted me to thank everyone for your thoughts and prayers. They know that they are loved by many friends and family. Please continue to pray for them. Hopefully, this journey is almost over and Katie and Joe will have their prayers answered and their baby girl better.

Janna

Our baby girl is finally home! Mary Grace was released from the hospital today around noon. She is feeling better. She did develop pneumonia and is being treated with antibiotics. Katie and Joe are so happy to be home also. They really wanted to take a nap this afternoon but Mary Grace wanted to play. The doctors are still going to finish running the test needed to officially diagnosis Mary Grace's lung problems. She has to get over the pneumonia first before they can do anymore test. They will have to go back to New Orleans maybe sometime this week to finally do the lung function test we have been waiting for. Mary Grace was sent home with oxygen and will have to sleep with it at night for a long time. That is OK, she sure looks cute when she wrinkles up her nose to put the probe in. She has learned to not play with it and leaves it alone. Hopefully, the doctors will get the ball rolling again with the test Mary Grace needs; and soon we can breathe easily that Mary Grace is on a road to recovery with the correct medication to assist her in her journey with the lung issues she will have. I will post when Katie and Joe get more information. It may not be for a couple of days because the doctors won't do anything else until Mary Grace gets over pneumonia. Please continue to keep Katie, Joe and Mary Grace in your thoughts and prayers. They have been such strong and vigilant parents. Mary Grace is one lucky little girl to have them. We are one lucky family to have Mary Grace!!

Janna

Mary Grace had some test ran around 11am this morning. The doctors ran a CST test that involved putting Mary Grace to sleep and took pictures of her lungs to see if they are functioning correctly. She did great and came out of the anestesia like a champ. We will not know any of the test results until Dr. Thomas comes by this afternoon and updates Katie and Joe with the results. She is sleeping right now with her MaMae. Hopefully, we will be headed for a homecoming soon and finding out the rest of the pieces to Mary Grace's lung puzzle. I will update hopefully tonight after Katie and Joe are updated by Dr. Thomas. Please continue to keep them in your prayers.

Janna

Mary Grace and her Nanny!

Mary Grace had another day of struggles. She has now developed signs of pneumonia and a respiratory therapist has been coming in today to give her breathing treatments. The doctors are going to start running the test in the morning to determine which of the three diagnosis they are looking for. Mary Grace will be put to sleep and the doctors will run as many test as possible because they only want to put her to sleep one time because of her lungs and oxygen. We still are not sure when she can come home. The doctors are not even talking about that. They just want to get the ball rolling on getting the correct diagnosis to be able to treat her appropriately. She still has a long road to go but at least we are on the right road now. She is still as cute as can be. Katie and Joe just wanted me to let everyone know how lucky they are to have such great family and friends. Please continue to pray for Katie, Joe and Mary Grace.

Janna

We finally have some news! Dr. Thomas a pediatric pulmonary specialist in Baton Rouge saw Mary Grace yesterday and gave us some insight to what might be going on with our little angel. He seems to think it is one of three things. Out of the three, all of them will not alter her life by any means.She will have these problems for the rest of her life but it can be treated with medication. She will have some more testing to do to confirm which one of the three Dr. Thomas thinks it may be. He said that she may not be a great track star when she is in high school due to the lung issues but she will be just fine. She may even have to sleep with oxygen at night for a long time but she will live a normal, healthy life. Katie and Joe are feeling some relief but they will not be completely satisfied until the test results come back and they know which one of the three they are dealing with. The doctor did say Mary Grace does not have RSV, but she does have a little virus and they can not do the test until she gets rid of the virus. We are hoping they can start the test as soon as possible. We are not sure yet if she will be coming home until the virus runs its course or if they will keep her in the hospital and run the test as soon as they can. I will update again as soon as I get new information from Katie. The continued support and prayers mean so much to Katie and Joe. They really appreciate all the love and care everyone has given them. We are finally on a road to some answers to get our baby girl well.

Mary Grace is still at the Lady of the Lake Hospital as of today. Dr. Eidell will be transporting her to Children's Hospital in the morning. He will evaluate Mary Grace to determine if she can still have the lung function test tomorrow. Mary Grace is still on oxygen and can not be taken off. Her stats still fluxerate and are not steady. A respiratory therapist saw Mary Grace this morning and tested her for RSV. We are waiting for those test results to come back. Even if Mary Grace has RSV, the doctors say it has to run its course and it will not change anything. She will just have RSV in addition to the lung problems. As of now, we are not sure when Mary Grace will be able to come home. Her pediatric pulmonary specialist said he can not perform the lung function test if she is still on oxygen. She has to be put to sleep with the test and he does not want to do that with the oxygen problems she is having. This is a hard decision to make considering Mary Grace has been waiting on this test since the beginning of January. There are only three machines in the United States that perform this test. This is one of the most severe oxygen decreases Mary Grace has experienced. Her doctors feel that they are closer to finding out what is wrong with more pieces to the puzzle being exposed. I will post more information as I receive it from Katie. Please continue to keep Katie, Joe, and Mary Grace in your prayers.

Mary Grace was admitted into Lady of the Lake Hospital last night. Her oxygen dropped around 9:00 pm and Joe and Kaite called her pedriatric pulminologist to let him know. He told them to take her to the Lake because they could not get to Children's Hospital due to Mardi Gras traffic. Katie and Joe got to the ER at the Lake and was admitted around 1:00am into a room. Mary Grace is still there. Her oxygen doesn't want to keep stable and her pediatrician doesn't want to send her home. Mary Grace is scheduled to have the lung function test at Children's Hospital this Thursday and we are praying that it will give us the answers we are looking for. Mary Grace will probably be discharged from the Lake tomorrow and Katie and Joe will drive her to Children's Hospital where they will admit her for the test on Tuesday. Katie and Joe feel really secure that the doctors are one step closer to finding out what is causing Mary Grace so much trouble with her oxygen. All the test that have been run so far have all come back negative. We are really thankful for that. Please keep Mary Grace, Joe and Katie in your prayers. I will update the blog as I new information from Katie. I spend all day with her at the Lake today and she is still the happiest baby to be in the hospital and having the oxygen problems she is having. We thank everyone for their continued support and loving concern for our sweet baby girl.

Janna

Hello Everyone! Mary Grace was admitted in Children's Hospital yesterday afternoon by her doctors. She was dehydrated because of bowel movement issues. She was given an IV with fluids and is feeling much better. The doctors (pedriatric pulminary specialist and pedriatric gastrologist) are running some new test today. They want to check for anemia, thyroid problems, and cycstic fibrosis. The doctors just want to rule these things out. Katie and Joe says they are not leaving the hospital this time without a diagnosis and cure for whatever Mary Grace is going through. Please keep Katie, Joe, and Mary Grace in your prayers. Please also pray that the doctors find out what is wrong with out little angel and fix her as soon as possible. I will post new information as I get it.

Thank you for all your prayers
and support,
Janna

Hello everyone! Well Mary Grace is doing great! Her oxygen level was at 98% on Friday in the doctor's office! Thank you Jesus for answering our prayers! We got a great report on Mary Grace. The doctor said he did not seem to think she had a structure problem in the lungs! He did put her on monitors at home for the breathing patterns and oxygen levels. He just wants to see how she is doing while she is sleeping. The monitors record her levels at a constant rate. Then we will go have them downloaded and he can have a report to help him diagnose her. We are getting admitted in Children's Hospital tomorrow at 4:00pm. He wants to do a sleep study test on her ! They will do all the test while she sleeps through the night and then they will release us Wednesday morning! The test results will not be in until Thursday! Mary Grace is being a little angel through all of this! She loves her doctors and nurses! We are so blessed to have such a wonderful crew at Children's in New Orleans! Please continue to pray for us and that will find out what is wrong with our little girl. I am sorry if I have not returned any phone calls. Mary Grace has been a little bit of a mommy's baby. Thank you for everything! Thanks for all the sweet comments. We love to get comments on here. It is so nice to know that so many people care! I will post when i know more!


Katie

This has been a long hard weekend! I am sorry i have not updated the blog! We have no new information. We are still waiting to get some more test scheduled! We have a doctors appointment with Dr. Edell Friday. We will talk about some more test we can do to get us closer finding out what is wrong with our little angel. Joe and I just want to thank everyone for the prayers and thoughts. We are very confident that our Lord Jesus Christ is with us every step of the way and he is guiding us! The doctors will find out what is wrong with her! She is in great spirits and smiles all the time! I will post any new information we get!

Thanks
The Amorello Family

Mary Grace is home. The doctor released them around noon today. They got the test results back from the test on Tuesday and it revealed that the problem they thought Mary Grace had was not it. She is not asperiating acid into her lungs from the reflux. At this point, the doctor's are not sure what is causing Mary Grace to have the problems she is having. There are a few more test for her to go through but Katie and Joe are not sure when she will have them. The doctor is trying to schedule them as soon as possible. Katie, Joe, and Mary Grace are so happy to be home. Mary Grace still has some unanswered symptoms but Katie and Joe are very confident that her doctor is going to get them some answeres as soon as he can. Please keep them in your prayers because they are still traveling a down a scary and stressful road and not sure when it may end. We Love YOU, Mary Grace!!

**Nanny

Wednesday, January 28, 2009

Today has been a very imformative day for Mary Grace. First, she had a rough night last night. Her oxygen dropped to 83% ( normally it should be 96% -100%) and her hear rate went to 151 beats per minute (normally it should be between 90-100). A respiratory therapist came in and gave Mary Grace oxygen for the rest of the night while she slept. Katie said that was not fun! At 5am this morning, Mary Grace's oxygen had gone back to about 98%, which is great. She had her second procedure at 9:30 this morning. This procedure went well and came back normal. The pulimary specialist came in after he read the second procedure results and meet with Katie and Joe. He basically told them that Mary Grace would not be allowed to go home until they get her oxygen and breathing stable and they get the test results back from the procedure yesterday. So, they will be residents of Children's Hospital for a few more nights. He also told them that he is waiting on the test results of the procedure from yesterday to confirm that Mary Grace is asperiating the acid into her lungs. He is expecting those results back tomorrow afternoon or Friday morning. The doctor is saying that he thinks they can control the asperiating with the right medication. Katie and Joe are doing well considering the stress of having a 1 year old baby in the hospital with an IV. Mary Grace is a little grumpy. Katie said the nurses gave her a sponge bath this afternoon and changed her pajamas. Please keep Mary Grace, Katie, and Joe in your prayers. Hopefully they will be able to come home by Friday. I will update as Katie gives me new information.

-Nanny (Aunt Janna)

Since Katie will be unable to post anything for the next two days, she has asked that I keep you all updated on Mary Grace. Mary Grace is finished with her first test that was done today around 2:30 and she's been sleeping most of the day. Her oxygen level are a little low, but she is doing well. Katie and Joe haven't gotten any answers yet from the Doctor. Mary Grace is one tough little cookie!!! Please keep her in your prayers and thank you for checking in on her! I'll update the blog as soon as I know anything new.

-Aunt Kacey

Hello everyone,

Mary Grace has a big day! We will be admitted at Children's Hospital at 11:00 am today. She will have a test today at 2:30. Where they will go in and take look at her lungs and take a sample of the fluids in her lungs. Dr. Edell will let us know what he saw in her lungs but we will not know the results until Friday! Then we they are doing a test Wednesday morning to see if she has any blockages in her lungs! We will have 2 long days! Please keep our little angel in your prayers !Mary Grace has been down a long rode and now she might be at the end! Thanks for everything! We are so blessed to have Mary Grace...THANK YOU JESUS! She has been such a little tropper through everything! She never stopped smiling to sharing her binky with the doctors!

Please keep Mary Grace in your prayers!

Mary Grace first Day at Children's Hospital

Well as you all know Mary Grace has been down a long rode with Acid Reflux. For 3 months now Mary Grace has been having some heavy breathing which we have been on breathing treatments for. Which they never helped!! So her Pediatrician, Dr. Bankston had decided to send her to a Pediatric Pulmonary Specialist at Children's Hospital on Friday Jan 23, 2008. We are on our way to Children's Hospital for our appointment with Dr. Edell.We get there knowing Mary Grace is breathing fast. Which she was 65 breaths a minute ( it should be 30 to 32 a minute)and her oxygen level is at 94% (which should be at 96% and above). So they tell us that she can't go home because her statics are to low. First they want to start checking any heart problems off the list. We are sent to the Cardiology center at Children's Hospital to have a EKG and Echocardiogram. This point Joe and I are kinda worried until Dr.Ascuitto a Pediatric Cardiologist take a look at her test results and comes in. He tells us Mary Grace's has a wonderful heart! Joe and I both had smiles on our FACES!!! Thank you JESUS!!! BUT Mary Grace's oxygen level had dropped to 92% at this point and her breath per minute still in the 60s. So they tell us that to go back and see Dr. Edell that this is a lung problem. We get back to Dr. Edell and he then tells us that he thinks Mary Grace has 1 of two things....1 is that she is aspirating in the lungs which means whens she reflexes it is backing up in her lungs. You can aspirate two ways and they called it Up and Down. Most kids who have this they only have one of the two either up or down. Mary Grace is aspirating up and down both ways. He said in the 22 years of practicing he has not seen a case like this. If we let this persist it can damage her lungs which is not a good thing. Number 2 is that she could have something called a Stiff Lung. Which is not a good thing but Dr. Edell says that is like 25% she has that. So now we are at home watching little Mary Grace close and waiting on Tuesday for Test that will be run. We will check in at Children Hospital to have some test ran on her lungs on Tuesday and Wednesday! Then we will have more answers!