Children's Hospital of Philadelphia

     We have finally chosen the hospital where Charlotte will receive her transplant. After visiting and speaking with multiple hospitals about their transplant programs, we have decided to go to the Children's Hospital of Philadelphia (CHOP). This hospital is top rated in the country, and they see people from all over the world. You can see this displayed as soon as you enter the hospital. It is a gigantic mecca of children's health care filled with people of all colors and races. The doctor who will be handling Charlotte's case is both a bone marrow failure specialist as well as a transplant doctor. It is very rare to find a doctor who knows both the genetic and the treatment side of these diseases. He is the only doctor we have spoken with who has seen cases similar to Charlotte. He has treated several cases of CAMT and he stated, "only 50% had the MPL gene mutation that has been known to cause the disease." Charlotte does not have the typical MPL gene mutation that causes CAMT. This is why we are continuing to search for the cause of Charlotte's disease with genetic testing in order to help others in the future that may have the same genetic link. Research is the key! (God bless the people who area behind the scenes of our journey trying to help us find the genetic link. This information will help David and I in future pregnancies.) CHOP completes 100 bone marrow transplants a year which is far more than any other hospital. They have treated several cases of CAMT (Charlotte's diagnosis.) Dr. Olson, Charlotte's transplant doctor, was unbelievable regarding the amount of knowledge he has in the area of bone marrow failure syndromes. He is very proactive and began the HLA typing process as soon as we met with him. He explained that securing a bone marrow donor can take months, and it is imperative to begin the process, so that when it is time to complete the transplant, the donor is ready to go. He also drew preliminary blood work to check the function of Charlotte's liver and kidneys. The doctors want Charlotte to be bigger and healthier in order to give her organs the best chance of tolerating the transplant process. So, we will do many tests prior to transplant in order to ensure that she is healthy and ready to go.
     In other exciting news, Charlotte had her first follow up appointment with the pulmonologist. She passed with flying colors!!! This means that she had a monitor on her foot that looked at how she was breathing on room air for 15 minutes. She was 99% the entire time. So, 1) See ya later albuterol inhaler! We are down to only 1! 2) She can take the oxygen tube off for 30 minutes several times a day. For example, we can bathe her and take pictures without the oxygen 3) she will now have a repeat sleep study to see exactly how she is breathing for a long period of time. This will tell us how long she can be of of oxygen. (Hopefully its for good!) This should be in the next 2 weeks.
     In the weight gain department, Charlotte is steadily climbing the charts. She is 11 lbs now!  The nutritionist  had to increase Charlotte's calories because she is getting so big! All in all, Charlotte's health is rapidly improving these days, and we are starting to get rid of medications. Big changes are coming our way. It's a stronger and healthier Charlotte Harris!

Swallowing!

The past few days have brought lots of firsts for Charlotte! David turned 36, and so for his birthday we celebrated by going to the Baltimore Aquarium. Laura pushed the stroller while David carried Charlotte in a baby carrier for the first time. This has been a dream of David's since she was born. He loved every minute of it! Charlotte loved being able to look at all the brightly colored animals. Her eyes were as wide as saucers the entire time. Our favorite part of the day was the dolphin show. It is great to see how much being around other people and environments has brought out Charlotte's speech. She is talking up a storm like she is one of the girls when she is around Laura's friends. We also made our first trip to Nana's house in Delaware. This is the longest trip Charlotte has ever taken. She got to spend the day with her cousins Emmy and Logan and her Uncle Dennis and Aunt Erin. She loved watching Emmy do gymnastics. Logan played music on his tape player for her. They will be great babysitters when Charlotte is older. It has been about 14 weeks since Charlotte had her last swallow study. She had her swallow study at Mount Washington Pediatric Hospital, and she passed like a champion! She will be allowed to have small amounts of thickened food by mouth as tolerated. She has difficulty with using her tongue since she has not been eating for so long. So, an occupational therapist to is going to work on helping her coordinate her oral motor skills. Charlotte loves to sit in her big girl high chair to play at the table now. So, it on't be long until she will be sitting up to the dinner table with us for meals! Charlotte is 10 and a half pounds now. We are almost on the charts for weight according to her adjusted age! We've come a long way from 1.5 pounds. We visited and toured our first bone marrow transplant clinic, DC Children's Hospital, and we loved it. Charlote started talking during our meeting and had lot to add at our conversation. She is already going to be an integral part of her healthcare decisions! We will also be visiting The Children's Hospital of Philadelphia this coming Tuesday and Johns Hopkins on Thursday. Then, we will decide where Charlotte will have her bone marrow transplant. This hospital will do the typing to find her bone marrow donor match. Because she is young and caucasian, Charlotte has a great chance of finding a perfect match. If she was not fully Caucasian, it would be more difficult. That is why it is so important for individuals of all races and backgrounds to register to be a bone marrow donor. This will give others a better chance of having a life saving match. All in all, its been a wonderful few weeks!