Talked with neurologist

This morning I left a message for the neurologist and at 5:30pm I received a call back. For those who may not know, Arianna has a sacral dimple, which can be a sign of a tethered cord or other anomalies. We had an MRI done in December to check her full spine and also her brain since kids with DiGeorge Syndrome can have brain anomalies as well. The results came back negative for the tethered cord, praise God! She has a ‘butterfly vertebra’ of her T10, which is around the middle of your back. He said this mean her vertebra was not formed correctly and has the shape of a butterfly when a normal vertebra has a round shape. I asked if there are complications that can arise from this such as scoliosis. He said he cannot say since he is not a scoliosis doctor. So I asked, “Okay then who is?” He said we would have to see an orthopedics for that. He did say in plain terms, “If you are building with block and you have a block out of line, you will eventually have a shift. This is the same thing with the butterfly vertebra.” He didn’t feel we needed to see an orthopedic right away but is definitely something she will need to be followed up on as she gets older. He said it is worth discussing with our pediatrician at our next visit which is next month. He said from a neurology standpoint the vertebra isn’t pressing on any nerves and she wasn’t showing any neurological problems. I asked about things to look for and he said to keep a close eye on back pain, posture, and if one shoulder is higher than the other. I asked about further followup that would be needed. He said since they know what is already there then a simple back x-ray would give us the information we needed but that can be done by her primary.

I did asked about the brain scan but he didn’t have the scan in front of him. Isn’t that nice you would think since he is calling about the results he would have ALL the results. He asked when the brain scan was done and I thought….HELLO, at the same time, don’t you know anything about my daughter. But oh well, we are all human. Moving on… So I read the results to him that had me concerned. The part that I didn’t understand said, “Incidental note is made of cavum septum pellucidum and cavum vergae.” He said the ‘cavum septum pellucidum’ means there is a thin membrane between the lateral ventricles that are filled with fluid. The ‘cavum vergae’ is just an extension off of that. I asked if this was normal and he said yes. It does not affect the blood flow and nothing to worry about. Some people have it and some don’t. I asked if this will cause any problems and he said no. I asked if there was anything that indicated why she has a speech delay and he said there are no structural findings that can indicate why people have speech delays or mental retardation. It is something on the microscopic level and we already know she has the 22q deletion, which is the cause for all her medical problems.

I still don’t feel very educated about the subject so I’ll probably continue to do some research myself and TRY not to dwell upon it. The most important thing is that she does not have a tethered cord, no scoliosis, and brain scan looks good. I have already put the butterfly vertebra in Gods hands and will let him work on that himself.

We have officially been discharged from the neurologist and praise God for giving us one more doctor we can check off our list. HALLELUJAH! Isn’t God so good?!?!

Arianna has had so many medical miracles and I know its because I put all my trust in the Lord. He is using my daughter as a tool to share how wonderful he is. I can still have my moments were I get down about her having a genetic disorder but I will not allow it to control my life. I have a fun, loving, energetic, beautiful 13 month old daughter who is amazing doctors left and right. Like I have said before we’re just taking things one specialist at a time and one miracle at a time.

God Bless!

MacKinzie Kline

I just came across this website and had to share it with you. This is the young girl who is the spokesperson for the Children's Heart Foundation. Amazing little girl!

http://www.mackline.com/

Visit with nutritionist

Today we had Ellen, Arianna’s nutritionist, come out to the house to do the monthly check in. I wasn’t to happy to hear that Arianna had absolutely no growth this month. Her weight is still 17 pounds, length 72 ½ cm, and head 44 ¼ cm. Ellen strongly believes if it wasn’t for her getting sick she would of gained some weight. The month before she had a 7 oz weight gain and the month before that was a 12 oz gain. It’s a little disappointing but I’m glad she didn’t lose any weight. We will continue to keep at it and hope next month is a big gain. Arianna is doing fairly well with her feedings but definitely not enough to put much weight on her. She has really been into drinking yogurt smoothies, which is good cause I pack on a lot of calories with the milk and duocal. Ellen felt it was time to switch her over to whole milk. We are to add 8 oz of milk and 1 ½ scoops formula to boost the calories, and then I can give her 4 ozs at a time. Since she has been on a 27 calorie formula if we just switched her to whole milk alone she would lose 33 calories per 4 ounce bottle. With her no gain this month we definitely don’t want to skimp out on the calories.

Then I got a call from the GI clinic and they had to cancel her appointment we had scheduled for this week. The next available was for Feb. 28th. I was a little blown away that I had scheduled this appointment a month in advance and now they are rescheduling us for the end of February. But I guess this is a good thing since Arianna didn’t gain any weight. The GI doctor would not be too happy and I’m sure the feeding tube talk would come up again. This gives us some time to work more with Arianna and see how the transition to whole milk goes. So far it’s been good today with just a runny diaper. (Eeeww, I know, sorry!) Hopefully that works itself out.

Still no word from the neurologist. It’s almost like trying to get ahold of the President. I just have a few questions and it would be nice to get some answers. Maybe I’ll try calling again tomorrow.

Well I hear my baby girl crying so better run….

American Heart Association

When I first found out about Arianna’s heart defect, I immediately turned to the internet to look for a local support group. To my surprise there wasn’t one and I spent the months leading up to her surgery being very scared and alone. Yes I had my family and I couldn’t of done it without them but I needed to connect with other CHD families. We went through her surgery and when we were finally home I felt this huge sense of relief. At that point I decided I wanted to make some contacts within the community and let them know if they ever had a CHD family looking for support then they could give out my number. I immediately contacted the American Heart Association (AHA) and asked if they did any kind of events for CHD families. I was directed to the Heart Walk coordinator who asked if I would be willing to come into the office and have a meet-and-greet with the facility. So Arianna and myself went to the local office and had a nice little meeting. I got to share my experience with them and gave them my information to pass on to anyone who may need it. They asked if I would ever be willing to speak at local events that come up throughout the year. I told them yes and then went on my way.

To my surprise in November I got a call from them asking if they could use Arianna as a survivor story in a local magazine, which happens to be the magazine company my mom works for! I was so excited and honored that anyone would want to do an article on my baby. They had a photographer come out last month and they composed a short article on Arianna. The magazine will be coming out in February, however, I just got the rough draft from my mom today, so as soon as I can get it scanned I’ll have to upload it so you all can see it.

Then about 2 weeks ago I get a call from the Heart Walk organizer and she wanted to know if I would be willing to speak at a local breakfast event to promote the 2008 Heart Walk. I have heard from many people that the AHA only donates one penny of every dollar to CHD research. So at first I was skeptical and asked if someone could give me a figure for what they contribute to CHD research. I didn’t hear anything until yesterday the same lady called back to see if I was going to do the speech. I told her I haven’t heard back from anyone so I hadn’t made up my mind. She was able to find the 2006 budget and this is what she said. “Arizona raised 1.2 million dollars and the national headquarters gave back 1.7 million dollars in grant money.” I told her that’s great but what went to the children. She said, “11 million dollars went to pediatric research throughout the US.” She went on to explain that research being done in other states does benefit Arianna and I told her I completely agree. I told her I needed some time and I would call her back tomorrow. I thought and prayed hard on this and God told me that it’s not the dollar amount that matters but the act of giving to the community. You may ask, “Well what are you giving?”, I’m giving a new way of looking at heart disease. When people think of heart disease they think of the older generation who acquire heart disease, not baby that are born with it. These children go through a lifetime of surgeries, heart caths, medications, and sometimes-even transplants. We need more to be done for these children. I know my daughter’s life depends on it. Now whether it’s 11 million dollars or 100 million dollars it needs to be brought to the public’s attention. All things start out small, but it’s the faith of just one that can turn it into something greater. I have put my faith in God and will let him lead me wherever I should go. The first place he has lead me is to the AHA Heart Walk breakfast, which is being held on Jan. 17th.

I am a big supporter of the Children’s Heart Foundation. (You can get the link from the link section of my blog.) This organization is completely dedicated to funding congenital heart defect research. I have already contacted this organization to try and get involved and even possibly establish an Arizona chapter since there isn’t one yet, but was told there was already someone working on that and they will forward my information. I have yet to hear back from them so I’m leaving that one in God’s hands.

My girl is back!

Not completely but glad she is feeling better. She still has a runny nose and slight cough, which is worse at bedtime Her eating has decreased dramatically. I'm hoping she picks back up soon. She was on a 5 day streak of good eating last week and since she got a cold she isn't eating much.

We are getting ready to head out to Aunt Lissa's to play with Bryce and Shawn, Arianna's cousins. Please keep our friend Kate in your prayers. She is in the hospital having a hard time recovering from open-heart surgery. You can get her blog from the links on the side.

God Bless,

Vanessa

Still feeling yucky

Arianna had a really rough night last night. She cryed and coughed all night and wanted to be bounced, hence no sleep for momma. It's okay, I have to be thankful for even having a child to hold and take care of, so many families have lost their children to childhood diseases.

This morning I completely forgot we had a meeting with Janet, Arianna's occupational therapist, so I looked quite surprised when she knocked on the door. We talked about the latest stuff going on with Arianna and she was in shock to hear about her eating. She stills wants to work with her every other week. At this point she won't feed herself much and hates the highchair. So she wants to work on that with us and getting her into more of a routine, but for now we are just praying she keeps up the eating. Of course with her being sick she hasn't eaten much so we'll see how she does in the next few days. Our next meeting with Janet will be next week along with the nutritionist.

I checked this morning and I think she is working on getting 3 more teeth. She has a low-grade fever, runny nose, cough, and has thrown up about 4 times today. She seemed a little better this evening while she played with Daddy, but its now midnight and she back to feeling horrible and not wanting to lay down. I pray this passes quickly, she just got over a nasty stomach flu a few weeks ago.

HAPPY NEW YEAR!

We spent New Years Eve at Robert's parents house with his family. We had a great time and stayed up till 3am. Here is a picture of Arianna ringing in the new year. She was so tired but still stayed up till 1am. This morning she woke up with a runny nose, cough and acting really irritable. This evening she was drooling really bad and I think she is getting another tooth. Here I couldn't wait till she got her first tooth and know they are all coming in at the same time.

I wanted to share something with you all. There is this online company named Bad Egg Designs which is doing a t-shirt fundraiser for ill kids. If you go to http://www.badeggdesigns.com/shirts.html you can click on the link to see which children are being sponsered. There are 3 of are friends on there: Madison, Maggie, and Zachary. Check out the different shirts you can order and you can specify which child you want the donation to go to.