Torticollis & EEG

Well, we have known that Allison has had some trouble holding her head up straight, but over time it has gotten more severe. She will be starting some more intensive physical therapy this coming Monday to help her gain the strength to overcome this condition that they call torticollis. Hopefully she does well.

She has also been moving in ways that are a bit concerning to the doctors. She is scheduled for an EEG (Electroencephalography) on the Thursday that follows to rule out possible seizures.

Allison will also be going in to have her hearing and sight checked as is routine for babies who had a rough start like she did.

We are going to have a very busy couple of weeks ahead of us, but hopefully all appointments and therapies go well!


Well, all the testing came back normal. It turns out that the swallow study they did was not the one that the GI doctor wanted, so I think they are scheduling us for that again. But Allison seems to be eating better and had really great weight gain last week. Hopefully it was just a fluke month and she will get right back on track with growing. Her therapist has given us exercises to work on too to keep Alli on track with meeting her physical milestones. She was getting behind, but the therapist said she is seeing tons of improvement since we started the workouts. So all in all, it looks like we are back on the upswing with things! We visit the pediatrician again on the 9th. Hopefully Alli's good weight gain will continue and there will be nothing more to discuss :)

Failure to thrive.

Allison has been unable to gain weight since her last exam. The doctors have her scheduled for an upper GI study on Wednesday to check for issues with swallowing, and an Echo on Monday to make sure her heart is doing okay. She had a gastric emptying scan done last week and the results came back normal so her tummy seems to be working properly. We are hoping we get things figured out quickly so we can get this girl eating!

Amazing Girl!

Had our follow up appointment with Dr. G (Alli's Surgeon) today. He looked at her chest x-ray and told me that she is perfect! :) I can hardly believe it, but he said that we no longer need to follow up with him unless we have concerns. Her lungs have properly filled her chest cavity, her heart has perfectly moved into the correct position, and her diaphragm has just the right symmetry. She hardly vomits at all anymore, and is growing great! Her lungs are still fragile so we need to keep her from getting sick, but that is standard pediatrician stuff. So now all she will have are her normal well baby checks with Dr. Prince (local pediatrician), just like any other baby. When she is 1 the cardiologist will see her to make sure the wholes in heart have closed, but other than that we should not have to go all the way to Sacred Heart anymore. Her therapists will continue to visit her once a month to make sure she stays on track with her milestones, but so far that is not at all a concern as Allison has been exceeding expectations. We are so blessed to have such a strong little girl. What an amazing come back! Allison is the most amazing girl!

Breathing Issue Update

We got a call from Allison's pediatrician this morning to come in for a follow up to her ER visit the other night. It turns out that after reviewing the x-rays she has early stages of pneumonia. We are so glad we took her in the night we did, because if the pneumonia had developed further it would be life threatening for Alli. It would have been easy to miss because overall Allison's health seems fine - just the one breathing struggle incident. It is uncertain what caused the pneumonia since she has not been ill, but any irritation to her fragile lungs can trigger it. She is now on an antibiotic which should clear things up fairly quickly, but this just shows us how careful we will need to be with the upcoming flu season.

Quite a Scare! 9/11/11

Allison gave us quite a scare last night. She wasn't able to breathe. For at least 15 minutes she was unresponsive and gasping for air. We rushed her to the ER, it was 11 o'clock at night. Before we arrived the dyspnea subsided and the doctors were not able to find anything wrong. They did a chest x-ray and all. They sent us home after basically 3 hours of waiting around for no information, and she has been totally fine since. We are unsure what happened and are praying it will not happen again. Fortunately she has an appointment with her surgeon on Wednesday. Hopefully he will have some answers for us.

Keeping Alli Safe!

Dear Family and Friends,

We are writing regarding a very important matter, Allison's health and safety. For those of you who plan to visit us over the next few months, please take a few minutes to read this letter.

We would like to share an important topic recently discussed with us by Allison's doctors. If you are not aware of RSV (Respiratory Syncytial Virus) you are of the majority. Nearly every child has had the virus at least once by age two. For babies born full-term and without complications, it is typically a bad cold. But, the highest risk factors for contracting RSV and developing complications like pneumonia, bronchiolitis, and other sometimes fatal complications are; being born premature, being born with a lung condition, or being born with a heart condition. Allison was born with all three.

Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Allison safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands, and up to twelve hours on objects. If Allison contracts RSV she will likely be hospitalized since she does not have the necessary immunities to fight off infection like the rest of us. Last year alone, over 125,000 infants in the US were hospitalized due to complications from contracting RSV.

That being said, we'll be asking our visitors to follow a few guidelines to help prevent Allison from contracting RSV or other illnesses.

  1. Please be prepared to take off your shoes and wash your hands upon entering our home.

  2. Please refrain from coming over if you are currently experiencing any illness symptoms, or have been in close contact with anyone showing symptoms.

  3. If you are a parent of young children, please refrain from bringing them into our home during RSV season. The most common form of transmission is from child to child.

  4. If you smoke or live with someone who smokes, please change your clothing and refrain from smoking prior to visiting. Allison's lungs are very sensitive to smoke and even passive exposure increases her risk of contracting an illness.

  5. If at all possible, get a flu shot at the start of the season.

Please do not let these precautions frighten you or stop you from making contact with our family. They are simple precautions that every loving parent with a fighter like ours must take during this season.

Unfortunately this also means that there will be events during RSV season that we will be unable to attend with Allison. If you know that either young children will be attending, or that the number of people attending is too large to screen, please advise us of this. Please do not be offended if we have to turn down your invitation, as we are simply trying to keep our baby from going back to the hospital.

We have been advised that Allison's lungs will be fragile until she is 2-years of age. We hope you understand, and we appreciate your help in keeping Allison RSV-free until then.

Best Regards and Warm Wishes!

-Allison's Loving Parents