April 17, 2009 - Neurologist Visit

So we went to the pediatrician on Wednesday. Avery weighed 13 lbs. 8 oz. and has grown quite a bit in length. Everything went well there.

On Thursday we went down to Texas Children's and saw the neurologist that Avery saw when she was four weeks old. She thought that Avery was making good progress in some areas. She is smiling, laughing, looking at us, cooing, and razzing. In other areas Avery hasn't made progress. She doesn't bring her hands together or to her mouth and the Dr. still did not see some of the reflexes that she needs to see. She also tenses many parts of her body. She at times arches her back very hard, curls her toes tightly, and makes a very tight fist. The Dr. said that this is typical of a child with low tone. The Dr. decided to run some blood tests that might give us a diagnosis. They took the blood yesterday and we won't know the results for 3 to four weeks. The doctor would not tell us the things that she was testing for because she did not want us looking all of them up and getting upset before we even know if Avery has it. That was a good call on her part.

One of the things that the doctor noticed about Avery reminded me of one of my previous students. I taught special education for 5 years and saw many kids with different kinds of special needs. Anyway, I realized that she was most likely testing Avery for what that student has. It really got to me. Please pray for me during the next few weeks. This whole thing is like an emotion roller coaster. When we see doctors it is all fresh again and there is always new info to take in and process. Then in a few days everything goes back to normal. Then we see a doctor or therapist and it starts over again.

I really need your prayers at this time. People might say don't worry until you know what the actual diagnosis is but that is very hard when you are in the situation.

I was having a moment today when I was holding and hugging Avery and Levi saw me crying. He hasn't seen that much so he looked very concerned. I told him I felt sad and asked him what makes him happy when he feels sad. He first said a baby song (I think he meant lullabies). I said what else. He said my daddy makes me happy when he comes home from work. I said anything else and he said Jesus and The Lord. He then started singing the words "The joy of the Lord" in a tune that he made up. There were some very very high parts to his song and I started laughing. I guess Jesus knows how to make me happy through Levi.

We won't see the neurologist again for three months. We will be waiting for the test results to come in three or four weeks. Thank you for reading and keep praying.

How we are doing.

When Avery was born there was a lot to take in and so much going on. I cried when they took her out of our room and put her in the NICU. I cried again when I saw her in the NICU for the first time because she looked so tiny and alone in her little bed. It was hard once more for me when I had to leave her at the hospital and go home to stay at night. Then she came home and we were so excited. Since then everything has just gone along great and normal besides all the doctors appointments. I have been very much at peace with whatever is going on with Avery that everything is going to be okay. Many people prayed for us and we are so thankful.

Being a newborn there weren't many ways for Avery's hypotonia to be obvious to us. Now she is 3.5 months old and it seems that it is showing to me a little more and that is why I decided to look up the details of it on the internet. That was good but also hard for me. It made it more real that Avery might have some delays in her physical development. I know intellectually that God is in control and I shouldn't worry but that is very hard sometime to really feel. I ask that everyone pray that I keep living in the day because it is so easy to start wondering how she is going to be and how we are going to handle situations in the future. My mind can really wander when I don't even know what the future holds. I guess any Mom reading this would understand me when I say that I look at her when she sleeps and just think that I want everything to be ok for her. I think me being so emotional about this is just something I have to go through in realizing that she might have some bumps to get over. The funny thing is that it might just be harder for me because she probably won't even know anything different.

Jeremy is in a different place than I am. I asked him why he doesn't say much about Avery having hypotonia and he said that in the back of his mind he just knows that Avery is going to be ok. I'm glad he has that outlook and peace because that helps me when I let things get to me. Jeremy hardly ever worries about anything and that is something that has always helped me.

Levi just loves on Avery and is so sweet to her. Even when he was jealous in the beginning he was still always sweet to her. He always wants to kiss her goodnight and in the morning. Sometimes when he wakes up after his nap the first thing he will ask me is, "Where is sister?" He is funny too because he talks to her in baby talk with a high pitch voice. It cracks us up.

Just keep praying for us as we keep going to doctors visits and for Avery as she grows and develops. Thank you. Our next doctors visits are April 15th to the pediatrician and April 16th to see the neurologist at Texas Children's in Houston.

Why Blog?

I decided to start this blog because I thought it would make things easier for everyone to be updated on Avery without me having to say the same things over and over. I also thought it would help me say things that I might be thinking or feeling more easily. So here it goes.

I want to start by saying that Avery is beautiful and sweet. She is absolutely a miracle and I thank God every day that she is here. It was sure hard to get her here. When I say she is a miracle I mean that God made everything fall into place in order for her to be born the day that she was. If she had not been born that day she may not have been with us. God definitely had a plan. I will recap the end of the pregnancy later when I have more time to write so that everyone can truly understand what I mean.

Anyway, Avery is turning 15 weeks this week. We were told the first week that Avery was born that she has what is called hypotonia or low tone. I was told not to get on the computer and look that up at first and I have to say that was good advise. Recently though I thought it was time that I know more about what hypotonia is so that I am not in the dark and so that I can do whatever she needs me to in order to help her progress physically. So here is what I now know about hypotonia. It is usually a symptom of something else that a child has. In many cases though they can't find that the child has anything else and this is called benign hypotonia. In that case the child usually progresses and is able to crawl then walk but with delayed progress. The delays could be just months or in more severe case they may not walk until maybe 3 years old. Low muscle tone may seem like weak muscles but it is different in that a person can work out and lift weights in order to have stronger muscles. You can't lift weights to improve low muscle tone. A child that has this seems to be loose or "floppy." I don't really like that last term. I don't know if all of that made sense but if you want to know more you can look up hypotonia on the web.

We are praying that Avery has benign hypotonia. She has had an MRI, EEG, and chromosome analysis done already and all have come back normal. We have seen a neurologist once when Avery was 4 weeks old and she did say that Avery seem to have it less severe than other kids she had seen. Avery moves a lot when she is awake and is very limp when she is asleep. Lately she has tended to put her arms out straight and turn her wrists out when she tenses up. She also arches her back a lot and seems to feel good in that position sometimes. She likes to suck on a paci but can not keep it in her mouth herself. We hold it there for her sometimes and it helps her go to sleep.

Other than the low tone Avery is progressing well. She weighed 12.5 pounds last week. She started at 6.3 pounds. She smiled for the first time February 1st and has been smiling ever since. She laughs out loud as well. I love it. She has very blond eyebrows with a hint of red and her hair is brown with a hint of red as well. She gets that from Jeremy's mom and Grandma Byrd.

Well that is all for tonight. I have more to write later but it is getting late. Thank you for reading this and keep Avery in your prayers. I should say keep me and Jeremy in your prayers as well.