Atrial Septal Defect....... We met with the cardiologist this afternoon for an echocardiogram. Several doctors had noticed a significant heart murmur in Rose Nacheca. At first I was worried because we were supposed to be there only for the echo but after the technician was done she said she was going to put us in a room and have the cardiologist come in and talk to us. That was a stressful 20 minutes.

The news was not really that bad though. The good news....ASD is very easily fixed and does not even require open heart surgery! It can be done in a cath lab as a same day surgery. She would not even have to spend the night. The bad news...she is too small for the surgery. They would not do the surgery for 12-18 months. So it cannot be fixed during this visa.

ASD is a hole in between the top chambers of her heart. Most infants are born with this. The hole gradually closes on its own. At three years old they do not think that will happen now. The average hole is 2mm. Hers is almost 7mm. They want to do another echo in 6 to 9 months to see if there has been any change.

ASD would not cause her growth retardation so there is still something else going on. My question for the cardiologist (to which he did not have an answer) was if whatever is causing her growth delay could also have caused the hole to not close by itself. Michelle was born with kidney reflux. Kidney refux will (if it is going to) correct itself by age 5. After age 5 surgery is required to fix it in order to protect the kidneys. Michelle still had kidney reflux at age 5 and the doctors wanted to do surgery. Since Michelle was significantly behind in size I refused to consider surgery until she was the size of an average 5 year old. My instincts paid off, when Michelle was 7 1/2 to 8 years old and the size of an average 5 year old her kidney reflux was gone. My thought is maybe this could be the same for Rose Nacheca. Maybe once she grows a little maybe the hole could close too. I have no idea (nor does the cardiologist) if this is possible or not.

So for now they said that she can be treated like any normal 3 year old little girl. She can run around and play and she will be fine. They said that the surgery needs to happen before she is 5 years old or the hole gets to be 11mm. After 11mm the surgery would have to be open heart surgery. So this is better news than we were fearing!

We are still waiting for all of her blood test results, some of which could take a couple more weeks. But we are moving forward. Now that the cardiologist has cleared her the next major test she needs in an MRI of her brain and pituitary gland.

Thanks for the continued prayers. We are enjoying everyday with her and she is a bright spot in the house :) She learned to to say I love you, which is so sweet to hear!

Goodnight!

Greetings :) We have been very busy here the last couple of weeks. We have been catching up on life and trying to get things into a normal routine again after all of the chaos at the end of July!

We started getting some more test results back for Rose Nacheca. Last week she went down to the endocrinologist at Children's and had an x-ray and some blood work done. We also went to an orthopedic doctor last week as well.

The orthopedic doctor looked at the x-rays from Children's and remarked that you could tell by her bones that she had been under a lot of stress, trauma or has an underlying medical condition. She has lines on her bones, at first I wondered if they were breaks, that are called growth arrest lines. They can tell by looking at the x-rays that she grows differently. She does not grow for a while and then she will grow and then she stops growing for a while and then she will grow again. Each of these cycles creates one of those lines. This is exactly how Michelle grows as well when she is not on her medication. She would grow and inch and then not grow at all for 10 months or so. It would be interesting to see if Michelle too has growh arrest lines on her x-rays. Other than that he said that her spine is straight, her legs are not clinically significantly different lengths so no lift is required for her shoes.

We got the results of her x-rays for the endo today. Her bone age is significantly behind. She is 36 months and her bone age is that of an average 22 month old. For a normal 36 month old she should have had 53 growth centers visable on her x-ray and she only 40. For those of you not familiar with the endocrine world this might not make much sense so just trust me, this is delayed. Her IGFBP-3 levels were the lower end of normal but her IGF-1 levels were not back yet. They should be back by Friday.

Michelle also had her bone age done last week and those results were good as well. They measured her after being on Growth Hormone for the last month and she had not grown AT ALL! This was very disappointing for me but at the same time not surprising. Her body makes more than enough GH but not enough IGF-1. The growth hormone is simply to level out her blood sugar. But it is frustrating that we are going through all the work and pain of the shots and it is not working at all. We are still battling with insurance to get her Increlex covered so that she can start back on that. Back to the bone age, the last time that she had her bone age done it was only 2 months behind her chronological age. So thankfully her bone age is now behind 12 months. This is good because at least while she has not been growing for the past 8 months, her bones have not matured either. This means that nothing has been lost during this stint off the medication.

Hopefully this is not too technical. I know some of you reading are going through the same things and know what all of this means. For those of you who don't sorry :(

Other than that Rose Nacheca got to experience her first taste of fair food! She loved it all, the chili cheese fries, corn dogs, corn on the cob and by far funnel cakes were her favorite! She is up 1 1/2 pounds now and doing great! Her vocabulary is growing so much everyday. She constantly makes us laugh with the things that she says :) She is even starting to make friends with the dogs!

Thanks for the prayers! Please pray that Michelle could get her Increlex quickly or it will be a very rocky start to the school year as her blood sugar adjusts to the medication!

Let the testing begin.

Rose Nacheca continues to adjust to life in America beautifully! She is saying so many new words everyday!

She goes back to Children's tomorrow afternoon to start some tests. They are going to do some blood work to check for chromosome abnormalities that could explain her size. They will also be testing her IGF-1 and IGFBP-3 (that is what Michelle is deficient in.) Both Michelle and Rose Nacheca will have x-rays tomorrow as well. It is time for Michelle's annual bone age and Rose Nacheca will have an x-ray of the left side of her body to look at the growth plates.
Thursday she will go to the orthopedic doctor to look at her legs. It looks like one of her legs and one of her arms are longer than the other. I want to buy her some tennis shoes but if the difference is significant enough she will need to have a lift built into the shoe of the shorter leg. This would help with her spine as well.

There was a problem with our insurance AGAIN so Michelle is still only one growth hormone. She is still doing great on it but we would really like to get the Increlex started up before school starts so that we can deal with the blood sugar issues as she adjusts here at home rather than at school!

Thanks for the prayers. We are all enjoying watching Rose Nacheca experience all of these new things! At the same time we are showing her pictures of her family at OLTCH everyday and she loves seeing them! Speaking of OLTCH please pray for them. They got heavy rains and it flooded them a bit. Their generator went underwater so it is not working. Without a generator they do not have electricity or running water. Living in Haiti it is hard to find a new generator. God will provide though I am confident!