I have been really slow to give a medical update for Mahaela. Many of you know that our appointment was last Friday 1/14. Bill had the day off so we picked a day that we could go together. Mahaela did really well. We saw the pediatric cardiologist and he took a lot of time with us. They did an echo in the office. Mahaela was very compliant and still, but in the end, she just didn't "echo" well. Sometimes they just aren't able to get good pictures due to her anatomy, scarring, ribs, etc. So, there are still some questions about her anatomy that couldn't be answered. She does have good heart function, so that is good. The one great thing that we found out is that she does, in fact, have 2 ventricles. They feel that is good because she has the benefit of having a strong pump. It's just that her ventricles are functioning together as one because of the huge septal (barrier between the left and right ventricles) defect and the single outlet. Usually your right ventricle pumps to your lungs and the left to your body circulation. Because of her defect and how she has been corrected with surgeries so far, she only pumps to her body. Blood flows to her lungs by "gravity." It's complicated, but she has been corrected as if she has one ventricle and that is probably how we will continue with her surgery. Bill was able to sit in on the cath conference on Monday and hear some opinions of what is going on with her heart. All in all, she needs a heart cath to give the full picture. We also are still unsure of her spleen function or whether she even has one. There is some kind of scan/study that can show function. They say that kids with this defect often have no spleen or a cluster of spleens that poorly function. It's important to know so that we can be certain of her risk of infections.
The doctor did give his opinion that she does need to have the final surgery done (the last of three surgeries) and that she is of the proper weight and health to do it. So there is no urgency, but no reason to delay.
The office called today to schedule her heart catheterization for March 1. We may be bumped up if there is an opening that becomes available in February, but we are good with Mar. 1st.
As an ideal timeline for us, we would like to see her have surgery the end of March or beginning of April. That's just our initial thoughts...although we would like to postpone it FOREVER!
So that's her medical situation right now, but it's easy to keep pretending that she is Perfect! (which she pretty much is!)
Friday, January 21, 2011
Tuesday, January 11, 2011
A Video of Mahaela
I've attached a video of Mahaela having ice cream in our apartment in Sofia. This is our last day, so we were packing to leave. She says all of our names in her very cute Bulgarian accent. We often try to get her to say her full name because she says it so cute. She often just refers to herself as "Misha." Seeing this now, I can see how her language has come along so well. She understands so well. Just tonight, she was asking to get down from the dinner table. Bill told her if she finished her milk she could get down. She knew exactly what he had said to her and she did it, showing him her empty cup. We taped her a bit tonight at the table. I will post that in the future as a comparison to how far she has come in a month. Today I squeezed past her through a doorway and she said "excuse me." She is being a sweetie.
We have just been hanging out during our days. I can tell she really welcomes going out for any reason. She is eager to get in the car and go pick up the kids each day. She loves to shower or bathe and tries to take off her clothes if she knows that someone is going to take a shower. She showered with Lindsey tonight and Lindsey washes her hair and body and loves to take care of Mahaela. It's nice that Linds can be my helper girl.
We changed her cardiology appt to Friday so that Bill could be there with us. Mahaela needs her second shots of flu and Hep. A. We also found out she is not immune to Hepatitis B in spite of being vaccinated, so she will also need that series of 3 shots. So we need to make another trip to the doctor for 3 more shots. She is going to get a real phobia of doctors and I don't blame her! She is taking her baby aspirin, but she says it is "hot" and would prefer not to have it.
We should have snow around here for awhile. This weekend we will try to get out into the snow when the kids can all play with her and go sledding. I'm sure she will love it.
She has been biting a bit! I think Lindsey has been bit twice this week, but I also saw her try to bite the dog. Tonight she bit Lindsey on the back of the arm. Bill called for Mahaela to come upstairs and she immediately started saying "be nice." She knows better. She said "be nice" a few times and then gave Lindsey a hug. He made her say sorry. She is trying to be such a good girl and she knows when she has messed up. She has a tender heart.
We have just been hanging out during our days. I can tell she really welcomes going out for any reason. She is eager to get in the car and go pick up the kids each day. She loves to shower or bathe and tries to take off her clothes if she knows that someone is going to take a shower. She showered with Lindsey tonight and Lindsey washes her hair and body and loves to take care of Mahaela. It's nice that Linds can be my helper girl.
We changed her cardiology appt to Friday so that Bill could be there with us. Mahaela needs her second shots of flu and Hep. A. We also found out she is not immune to Hepatitis B in spite of being vaccinated, so she will also need that series of 3 shots. So we need to make another trip to the doctor for 3 more shots. She is going to get a real phobia of doctors and I don't blame her! She is taking her baby aspirin, but she says it is "hot" and would prefer not to have it.
We should have snow around here for awhile. This weekend we will try to get out into the snow when the kids can all play with her and go sledding. I'm sure she will love it.
She has been biting a bit! I think Lindsey has been bit twice this week, but I also saw her try to bite the dog. Tonight she bit Lindsey on the back of the arm. Bill called for Mahaela to come upstairs and she immediately started saying "be nice." She knows better. She said "be nice" a few times and then gave Lindsey a hug. He made her say sorry. She is trying to be such a good girl and she knows when she has messed up. She has a tender heart.
Sunday, January 9, 2011
A First
Last night was a first for us with Mahaela...She let me cover her up with a blanket!! Sounds too simple, but feels like a big deal. I had a great week with Mahaela. I can tell that she is responding better to me--a little better every day. Even when I correct her about something, she is much less likely to react to me with hitting. She really wants to please us. It is difficult to describe the subtle changes in her behavior. A few times I have asked her to say sorry to someone for something. She can say "sorry" clearly in English. But when she is not liking me correcting her, she says "So" or some other version of "sorry." This continues until she realizes that I'm onto her little game...then she finally says "sorry." She's a smart little cookie.
Anyway, when we put her to bed at night, she stands in her crib and cries for a moment and then lowers herself to her tummy. We have a folded blanket that she uses as a pillow. She doesn't lay down until we are out of the room and she kind of gives up. But last night, she let me lay her down, head on her "pillow" and cover her with a blankie. It was a sweet moment. I have also enjoyed getting to touch her and hug on her more. She is has only partially raised a hand to me this week, but has not hit me at all.
The other awesome thing is hearing her pray...it is so cute and such a gift. She knows we pray before meals and even when we forget, she will be the one to say "dear, Jesus" in her low Bulgarian accent with her eyes squinting half shut. So heart warming! She will repeat a simple prayer that starts with "dear Jesus" and ends with "thank you, Jesus. Amen" as she points to heaven. Pinch me! I can't believe I am sharing these moments with my little girl. I agree with Mahaela..."Thank you, Jesus. Amen!"
Anyway, when we put her to bed at night, she stands in her crib and cries for a moment and then lowers herself to her tummy. We have a folded blanket that she uses as a pillow. She doesn't lay down until we are out of the room and she kind of gives up. But last night, she let me lay her down, head on her "pillow" and cover her with a blankie. It was a sweet moment. I have also enjoyed getting to touch her and hug on her more. She is has only partially raised a hand to me this week, but has not hit me at all.
The other awesome thing is hearing her pray...it is so cute and such a gift. She knows we pray before meals and even when we forget, she will be the one to say "dear, Jesus" in her low Bulgarian accent with her eyes squinting half shut. So heart warming! She will repeat a simple prayer that starts with "dear Jesus" and ends with "thank you, Jesus. Amen" as she points to heaven. Pinch me! I can't believe I am sharing these moments with my little girl. I agree with Mahaela..."Thank you, Jesus. Amen!"
Wednesday, January 5, 2011
1/1/11 was Great...and then...
We had a great evening with family and friends to ring in the New Year. New Years Day was relaxing as it should be.
Then Sunday morning came...viral disaster! 6 out of 7 of us were sick! Not fun. Bill was the lone man standing. I was so thankful that someone could nurse us all. I was coming around by the time Aubrey, Mahaela, and Jake got it. Yes, even Mahaela got it again. She was sick Dec. 23rd also. So thankful that it was short-lived and we all survived. The laundry nightmare is another story!
Today, Mahaela had her blood drawn and a chest xray. They were able to get the 7 vials on the first try. I love the technician who has been working there for 32 years! Mahaela tolerated it and actually did really well as it is not that quick to get 7 vials. She was starting to get a poochy lip and bargain with us the minute she got into the room and recognized that blood draw chair with the arm board. She's a trooper. She even stood still for her chest xray. Some of the initial blood work that we could see was all normal or expected. She has a high hemoglobin and hematocrit and high platelets. All to be expected as she is compensating for less oxygen. I have been putting off getting her on aspirin until this blood draw. Now I can start giving her a daily baby aspirin as she definitely needs it with high platelets. She will love a baby aspirin--it will be her daily candy!
Bill showed Mahaela's medical reports to the head of Peds Cardiology here and we are feeling pretty encouraged about her condition. She goes to the cardiologist on the 13th. If she is cooperative, they will probably try to do an echo in the office to get a good picture of her heart and condition. We are anxious to see what they find. We are encouraged, but hear things like, "I bet what she really has is this or that." Some of the reports are just vaguely translated, so when they read about her condition and then hear our report of how she looks clinically, it doesn't always match up. But it is all speculation until they do some testing. But I am encouraged by it all. So next week we will know more. Bill has had some great opportunities to have some long discussions with the surgeon and a few cardiologists (they just seem to show up in the OR with time to talk??). It's been great that he has been able to really pick their brains and be educated on her condition, the latest research, and the various opinions--very reassuring and a blessing.
Oh, almost forgot...we had our first post adoption visit with our social worker. It went great. She was impressed with how well she is doing. Any concerns I have over her not liking me so much are just too soon to give it too much thought. I know she is getting better. She is doing awesome in every way. Her English is coming along great. We think it will be a "glowing" report! Ha! We are so proud of her and proud of her! Does that make sense?? Proud to have her/that she is ours and proud at how well she is adapting and doing. We know her world was rocked...and so was ours!
Then Sunday morning came...viral disaster! 6 out of 7 of us were sick! Not fun. Bill was the lone man standing. I was so thankful that someone could nurse us all. I was coming around by the time Aubrey, Mahaela, and Jake got it. Yes, even Mahaela got it again. She was sick Dec. 23rd also. So thankful that it was short-lived and we all survived. The laundry nightmare is another story!
Today, Mahaela had her blood drawn and a chest xray. They were able to get the 7 vials on the first try. I love the technician who has been working there for 32 years! Mahaela tolerated it and actually did really well as it is not that quick to get 7 vials. She was starting to get a poochy lip and bargain with us the minute she got into the room and recognized that blood draw chair with the arm board. She's a trooper. She even stood still for her chest xray. Some of the initial blood work that we could see was all normal or expected. She has a high hemoglobin and hematocrit and high platelets. All to be expected as she is compensating for less oxygen. I have been putting off getting her on aspirin until this blood draw. Now I can start giving her a daily baby aspirin as she definitely needs it with high platelets. She will love a baby aspirin--it will be her daily candy!
Bill showed Mahaela's medical reports to the head of Peds Cardiology here and we are feeling pretty encouraged about her condition. She goes to the cardiologist on the 13th. If she is cooperative, they will probably try to do an echo in the office to get a good picture of her heart and condition. We are anxious to see what they find. We are encouraged, but hear things like, "I bet what she really has is this or that." Some of the reports are just vaguely translated, so when they read about her condition and then hear our report of how she looks clinically, it doesn't always match up. But it is all speculation until they do some testing. But I am encouraged by it all. So next week we will know more. Bill has had some great opportunities to have some long discussions with the surgeon and a few cardiologists (they just seem to show up in the OR with time to talk??). It's been great that he has been able to really pick their brains and be educated on her condition, the latest research, and the various opinions--very reassuring and a blessing.
Oh, almost forgot...we had our first post adoption visit with our social worker. It went great. She was impressed with how well she is doing. Any concerns I have over her not liking me so much are just too soon to give it too much thought. I know she is getting better. She is doing awesome in every way. Her English is coming along great. We think it will be a "glowing" report! Ha! We are so proud of her and proud of her! Does that make sense?? Proud to have her/that she is ours and proud at how well she is adapting and doing. We know her world was rocked...and so was ours!
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