Well a big hi there and hello to everyone! Another month has passed and we have been having a blast! We are happy to report that after 8 months that Sophia's Pulmonary Hypertension is now at a normal level. We had an appointment at our Cardiologist in Saginaw in November and they told us that her levels were near normal and our trip to Cincinnati confirmed that is was indeed at a normal level. This means that Sophia is on her way to being weaned off her Sildentifil. Yeah one less medicine! While November had been a good month overall Sophia has had a few rough weeks, comparatively speaking. In October her overall pukyness had almost ceased. She'd have whole days that she would not get sick. This was not the case in November She had about two weeks where she got sick again some times every feeding of the day and even at one of the night feedings which hasn't really every happened before. We believe this was caused by: A. getting the first phase of the flu shot and B. Cutting teeth. Sophia was a teeth cutting monster she got two lower and two upper in the same week and a half. Since the teeth have come in her pukyness has returned to a more normal level (once or twice a day usually due to her "wet burps"). Despite the formula explosions Sophia remained quite happy and content. While she was having a harder time with her formula we held off on working on oral feedings, but have resumed them as well. She is doing well chewing on mum mum crackers (also known as rice rusks) she also chews on baby wheels at meal time. Over thanksgiving she tried chewing on bread, Had a little bit of cheese and really enjoyed tasting whipped cream. Although she is not taking full meals at this point by mouth she is indeed moving forward. Last night she actually ate 5 little puffs (both chewed and swallowed them). Sophia is also up to multi grain cereal and we've been told she can try stage two foods and introduce meats to her diet.
November was full of more firsts for Sophia. She has teeth as you have already heard. She got to meet and spend time with her cool cousins Bjorn and Britta at thanksgiving. She attended her first kids birthday parties(besides Liams), for her cousin Justin and Lilly one of our friends daughters. She and her brother also visited the Saginaw Children's Museum over veterans day.
December 1st marked our return to Cincinnati for her 6 month since discharge check up. Our 6 hour car ride without kids turns into a 9 hour ride when stopping for feedings and letting the kids stretch here legs but we arrived in Cincy around 5 p.m. We were able to once again stay at the Ronald McDonald house. It was so wonderful to see all of the staff again and I believe they were as excited to see us as we were to see them. It was like stopping in at a relatives house.
Sophia's appointments were on December 2nd, she had a chest x-ray, a sedated Echo-cardiogram, EKG and appointment at the High Risk Clinic. All went well. As I stated earlier the cardiology department reported that her pulmonary hypertension was at a normal level and they would call our Cardiologist in Saginaw to try to wean her off her medicine sooner then the Saginaw Dr. planned.
We talked with Dr Haberman and Jackie the Nutritionist at the High risk Clinic. They were very pleased with Sophia although they thought that she needed to gain more weight, so they upped her calories for her formula. They also Gave us a sample of a different formula to try to see if she could come off of the Ellocare and onto a more normal over the counter formula. So far so good on the conversion. When discussing her weight they explained that she will always be a person who will need a higher caloric intake due to her working harder to breath then typical kids. She'll be able to have the four course meal and keep a more slender figure because she burns more calories simply by working a little harder to breath. They also looked at her chest (ribcage)which has an depression in the center of it. We thought that the dip was due to where they tied the hernia repair off during surgery. They told us that it is very common in CDH kids and it was actually caused by the cartilage in that area being soft as a baby. With her working harder to breath and probably pulling her shoulders up to help her breath it caused the depression. They just told us to watch to see if it gets any worse. They told us they typically it doesn't worsen but it can cause bras to fit funny in the future and that later on in life if it is indeed a problem that cosmetic surgery can be preformed to make it be more typical. They also told us that she should have a yearly chest x-ray to watch for Scoliosis. It's a funny thing going to these clinics, they really lay out all of the possible problems that are minutely possible and can sometimes get you to worrying about things that most likely will not occur, but I guess it is good in the long run to be prepared with the knowledge. In knowing all the possibilities we know how truly blessed we are for her to be in such good shape.
Sophia was also able to see Jessica and Deidra, two of our wonderful nurses from the RCNIC. It was so good to see them again and they were both amazed with how big Sophia is and how well she was doing. It is truly amazing the bond that Sophia formed with her nurses. She had not seen them for 6 months and you could tell that she recognized them. We too felt that bond, seeing them was like seeing long lost friends. We can't wait until our next appointment in 6 months to see them again and hopefully see others that we missed this visit!One thing we kept thinking when going for the visit and staying in the McDonald house was if we would see other CDH parents that were there when we were 6 months ago. We might not have seen them but we saw their stories still up on their room doors and their names on the in and out check in board. Seeing this once again reminded us how truly blessed we are in so many ways and our thoughts and prayers go out to all of those who have little ones who need medical attention.
Sophia did get to have fun on the trip as well. She racked up some more firsts this visit. We all went to the Newport Aquarium and saw fish and sharks, not to mention Santa Scuba diving! She chewed on crust at Deweys Pizza (yum) and hung out with daddy in his favorite Irish pub, Molly Malones, not once but twice this trip. Sophie and Liam tried to have an ol'fashion Irish brawl while there but were laughing to hard to actually throw a punch. The kids also got to go the Children's Museum in Cincy where She watched her brother and daddy get rained on by balls in the ball pit.November and early December were a hoot, Lets see what fun the rest of December brings!
