So Many Appointments

Raymond's appointments in Philadelphia last week were rescheduled. This poor kid will eventually get there. When I was talking to the receptionist at the oncology office, Jackie, she asked me what Raymond is doing now developmentally. After I told her all the new things he's up to (and in to) she said she can't wait to see him. She said she was going to tell all the girls in the office what's he's doing now. They are all such nice ladies! I guess you have to be to work in a pediatric oncology office. That takes a special person!

I spoke with Raymond's neurologist about his MRI results. He said that everything looked great! Yay! That was fantastic news! Dr. G. said he actually expected to see some type of abnormality since Raymond has been oxygen deprived so often. So at this point, we will keep giving Raymond his seizure medication and adjust it accordingly.

Now onto Raymond's cardiology appointment. We ended up being there for over three hours. Raymond was very ready to leave by the end of it. So was Isabella because she knew we were going to visit Mom-Mom afterwards. They started off by trying to do an echo-cardiogram. Raymond was not cooperative. He did not want that lady to touch his chest with that jelly even though it was warm. She was able to get a few pictures of his heart but not many. Now we will have to take him back to Hershey for another echo-cardiogram but this one will be under sedation. The doctor really needs to get a better picture of the heart. For those who may not know, Raymond has an ASD (Atrial Septal Defect). So what is an ASD?

Here is a brief explanation: Normally the heart has four chambers: two upper chambers known as atria that are separated from each other by a fibrous partition known as the atrial septum and two lower chambers known as ventricles that are separated from each other by the ventricular septum. Valves connect the atria (left and right) to their respective ventricles. A small opening between the two atria is present at birth. Shortly after birth, the atrial septum gradually grows and seals this opening. In infants with atrial septal defects, the atrial septum may not close properly or may be malformed during fetal development. So in layman's terms, Raymond has a hole in his heart. In these disorders, the opening between the atria persists long after it should be closed, resulting in an increase in the workload on the right side of the heart and excessive blood flow to the lungs.

Since the right chamber of Raymond's heart is larger, it makes his heart work harder and burns his bodies calories at a might higher rate then normal. This is one of the reasons that Raymond is still so small. The cardiologist also diagnosed Raymond with pulmonary hypertension. Caused by the high pulmonary pressure in his lungs, the blood flowing from the right ventricle to the left ventricle is backwards, causing unoxygenated blood to be pumped to Raymond's body causing cyanosis (blue skin). Raymond's little feet turn blue all the time. The pulmonary hypertension makes open heart surgery even more urgent. The only hesitation that the cardiologist is having is that Raymond is so small. She said normally they would put a G-tube in the patient (which Raymond already has) and give them lots of extra calories to try to beef them up. Raymond has never been able to handle more then 8 ounces of food at a time. Also, when his calories are increased, his body immediately gets rid of them (diarrhea before the feed is even done). So what to do? His heart is burning a lot of extra calories and his body doesn't want anymore. The surgery can still be preformed on Raymond at his current size but the doctor's would prefer him a little heavier. We now need to go back and see the GI doctor to see if he has any suggestions on how to get Raymond's body to except the calorie increase.

On Sunday we went to visit Grammy. Everyone was ready to go!

We met her at The Promenade Shops so Isabella could get her hair cut at Sweet 'N' Sassy - one of her favorite places!

Afterwards, we went to Grammy's house. This was the first time Isabella, Raymond and I had been there. Aunt Theresa and Uncle Roy came over and we had a little birthday party for Raymond.

Raymond has been crawling for a little while now. He is now at the point were he is crawling very well. I was in Isabella's room putting something away with her and I heard a noise at the bedroom door. When we turned around Raymond was sitting there with a HUGE smile on his face. It all the sudden occurred to him that since he can crawl, he doesn't have to stay in the living room (or whatever room we put him in). I thought it was the cutest thing! They say a face says a thousand words and boy his did! I could see the gears turning. When I told Chris, his reaction was to say lets go to Babies R Us and buy a few gates.

Raymond also pulls himself up on everything!

Umm...excuse me? Where do you think you're going mister?

We recently got an enrollment form for Isabella's preschool for next year. We really wanted to put her in kindergarten next year but since she won't be 5 until November she misses the cut-off. I was torn whether or not to send her back to preschool because even though she enjoys going, she tells Chris and I she's bored. I spoke with her teachers about it and they said that can definitely see her getting bored because the "other kids aren't up to her level". They are going to start to give Isabella harder work and continue to do that next year if we send her. So Chris and I have decided we will send her. I was very glad I brought it up with her teachers. We have also signed Isabella up for swim lessons. They begin at the end of March and she's very excited to get started.

Raymond and Isabella had a pulmonology appointment yesterday. Isabella was diagnosed with mild asthma. Chris and I were pretty sure she had asthma because whenever she gets a cold (which isn't often) she gets a cough that doesn't seem to want to go away. Raymond was there for a routine visit. The pulmonologist wants to scoop his lung again and clear out some of the "junk" in it since Raymond can't clear it himself. She is going to coordinate that with his echo-cardiogram so he only has to be sedated once. She would also like Raymond to have a sleep study but that will have to wait until his heart issues are better controlled.

Until Next Time!

Lots of Love,