Wednesday, April 27, 2011

Why does your daughter do that?

First I have to go backwards...

I took my precious baby girl to the doctor for her 2 month check up and the doctor was concerned. She told me that she was "floppy". (Hypotonia is the correct word and it means that she has weak muscle tone.) She recommended physical therapy and that I should take her to see a neurologist. I was fine until I got home and had to tell my husband. That is when I burst into tears:( I didn't understand, why if it's this (insert your own word here)? All kinds of things were going through my head. We started therapy and kind of brushed off the idea of the neurologist. I know, I should have taken her but the thought of it just killed me. The doctors weren't concerned that she couldn't suck the bottle that well, would stop breathing and some other issues that I had nor would they tell me why she needed to see the neurologist. So we went on about our way...

She was about 5 months and I was concerned about the way she was eating. She would thrust her tongue out a lot while eating and she wasn't allowing me to change the nipples on her bottles. (She only wanted the 0-3 month nipple.) She was gagging a lot. She would do great for a couple of days and then all of a sudden it seemed like she would forget how to eat. She had also began to hold her breath and have spasms. These happen all day long at all times. It is almost siezureistic the way that these episodes present themselves. It was crazy and I needed help so I asked for a Speech Therapist or an Occupational Therapist to come in and evaluate her. They sent someone and she recommended that we go see a Gastrointestinal doctor.

Right after this we ended up in the pediatricians office again. He (a different doctor) noticed that she was in therapy for Hypotonia and wanted to know if I had taken her to the neurologist yet. I said no. I did have an appointment for the end of March but I had not taken her at that moment. He seemed to be upset with me and really pushed the subject. I asked if there was a great concern for anything then as her mother I needed to know. I am the type of mother that will fight for my child (see Little Buddy's Story... Celebrating Autism?). All he would reply, "If you knew how to take care of her better wouldn't you want to?". I was furious! He wouldn't tell me what they were "supposedly" seeing.

We made our appointment for the GI doctor and we explained everything to him. He let us know that she had reflux. He began treatment with Prevacid and ordered a Swallow Study. The Swallow Study came back and said that she was not aspirating (food going into her lungs) when she was eating. I was hoping that it would show reflux but apparently they don't do that?

We made it to the neurologist. He checked her out from head to toe, asked a lot of questions. We asked a lot of questions. He told us that at the moment he was diagnosing her with Sandifer Syndrome. I cried for a minute. (Who wouldn't when you don't know what that is?) He ordered an MRI, an EEG, and a whole list of blood work.

So what is Sandifer Syndrome? It is a rare condition that has high correlation with reflux. It occurs however, in less than 1% of babies with reflux. Some of the symptoms are: Arching of the back, Sudden rotation of the head and neck to one side, sometimes with the legs rotated to the opposite side, Gurgling noises, Possible abnormal eye movements, and Possible vomiting. Episodes generally last 1-3 minutes, and can occur up to 10 times a day. The baby will typically become quiet during an episode, although sometimes fussiness will occur. Fussiness or crying generally occurs after the episode.

I was going to insert a video here but the videos break my heart. To watch her in pain is not fun at all and I don't think that I could pass that on to you, I am sorry.
These happen ALL day long. They happen when it's time to eat breakfast ~ which is usually her worst because these hurt the most and last the longest. They happen at church, at the store, & in the car. I have even felt her have one in her sleep. Sometimes she will awaken from a nap screaming just to have an episode and then go back to sleep. There is no warning to when they happen. She can't stop them either, all movements are involuntary and indicates that she is in pain. There is nothing I can do to stop them other than to hold her tight and love her through them.

As of today the MRI came back normal! YAY! The EEG came back normal! Double YAY! PRAISE GOD!!! Now we are awaiting the blood work it takes a few weeks and we should know all the results very soon. Then we meet back up with the neurologist to discuss everything and our plan of action.

So this is what I have been dealing with over the past month (with all the doctors and tests). I haven't even told all of my family because I don't want to hear "their opinions". I think its most hurtful when people form their own opinions before hearing the whole story. I am open to answering questions if you have any. I am still researching and I will post any updates as I can.

The upside? Yes there is always an upside...I know that God has a plan for this too! I know that He hears me and I can run to Him when I don't understand what is going on. I have read that they usually grow out of this by the time the are 3 years old. I am praying that all blood work comes back perfectly. Thank you in advance for your prayers...

Tuesday, April 19, 2011

Celebrate Autism?

April is Autism Awareness month. This is a very special month for me, because every day is Autism Awareness in our home . I get to celebrate my son this month. CrAzY thought huh? You are probably thinking..."Why would you celebrate the fact that your son has Autism?". I don't celebrate the fact that he is Autistic, I celebrate the accomplishments from year to year, April tends to be the perfect time to do that.

Ethan was diagnosed at 15 months old with Autism. I knew that I was going to have to fight for him. God blessed me with the perfect child and now I had to get him to live in my world not his own. I had support and prayer and I went to battle. We had many sleepless nights, meltdowns (him and me, lol). We had days that I couldn't wait to end, and days that I wish could last forever. We've went three steps forwards just to go backwards five. He will be turning 10 years old in a few months and he has come a very long way. We still have a long road ahead of us. He is one amazing kid. Each day is an accomplishment when we don't have meltdowns or just a bad day. he has taught me so much through this whole thing. I found this poem I am the Child. I love this because it is so true that our children teach us. Please read it if you have a minute.

Facts and Statistics

  • 1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.1
  • Prevalence is estimated at 1 in 110 births.2  (1 in 70 boys)
  • 1 to 1.5 million Americans live with an autism spectrum disorder.3
  • Fastest-growing developmental disability; 1,148% growth rate.4
  • 10 - 17 % annual growth.5
  • $60 billion annual cost.6
  • 60% of costs are in adult services.7
  • Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention.8
  • In 10 years, the annual cost will be $200-400 billion.9
  • 1 percent of the adult population of the United Kingdom have an autism spectrum disorder.10
  • The cost of autism over the lifespan is 3.2 million dollars per person.11
Some more facts: Autism prevalence figures are growing, More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined, Autism receives less than 5% of the research funding of many less prevalent childhood diseases, Boys are four times more likely than girls to have autism, and There is no medical detection or cure for autism

These numbers really bother me. I can only hope that someone will hopefully be able to give us some answers one day. When Little Buddy was first diagnosed (about 8 years ago) the number was 1 in 170 children children. WOW! That number has grown tremendously!!! Please pray that they find answers.

I usually get asked do I vaccinate? I am NOT going to tell another mom to not vaccinate their child. But I will spread out my children's vaccines. Little Buddy is all caught up and I will soon start Baby Girl on a vaccine schedule (She has some things going on that I will hopefully write about real soon.). I , personally, am not willingly go into a doctor's office and allow them to inject 2-4 different vaccines into my baby. I don't know if vaccines cause Autism. I personally have never done the research. I have read about Tylenol not being good for your baby while vaccinating. I encourage you to do your own research and decide what works for you family.

If you would like some more info then I would check out the Autism Society website:) Please spread knowledge not ignorance!

Thursday, April 14, 2011

Day 27 - 30 ~ Spring Challenge

Day 27 ~ Something I need to forgive myself for...Day 28~ Something I need to stop blaming myself for....

I am rolling these two together. Because I start blaming myself for not doing all that I can do around the house, or I could help out others more, or for things that I am not. I then throw myself into a "Pity Party" and then I get upset. I just need to stop blaming myself for all the things that I can not help. Then I have to forgive myself for the way the I behaved - the pity party:( I don't think that I have anything big that I have done in my life that I haven't already asked God to forgive me for and therefore I no longer can condemn myself for those acts.

Day 29~...something that I would never get tired of doing...

I have several things that I will never tire of...being married. Yes, we are not perfect but I am lost without him, (pitiful, I know). Being a mother: I love to Little Buddy and Baby Girl grow, laugh, and play. I will never tire of being there for someone that needs me. I will never tire of coffee...could NEVER do that! lol I will never tire of shopping for fun. Going to church, reading my Bible, praise and them all. I don't think I would ever tire of blogging...this IS my outlet to the outside world. I may not be great at it...but I need it.

Day 30~ a photo of me today and 3 good things that has happened to me during this challenge....

Me & Baby Girl...Little Buddy didn't want his picture taken:(

Three things: 1. I was able to host my first giveaway!!!! 2. I have gained new friends through this! 3. I learned somethings about who I am today as a wife and mother!

Monday, April 11, 2011

Days 24, 25, & 26 of the Spring Challenge:)

Day 24 - a photo of something that means a lot to me....

my. Bible...
My Bible is something that means a lot to me. I have had this Bible for about 15 years. It has carried me through a lot. It holds all the answers that I will every need. There is comfort and guidance in every chapter. This is a love letter from someone who held my heart first. I love this Bible and this is the most important thing to me.

Day 25 - Someone who impacts my life regularly....

I know it sounds crazy but I would have to say my son. I have learned so much about myself from him. He has taught me that there is always more than one way to do anything. If I need help then ask. He has shown me that I have passion to fight for what I want. How to have faith like a child. To take life slower and not to be in such a rush. He has taught me more that just these but this is what I will give you for now.

Day 26 - How have I changed in the past 2 years?

Well, over the past two years...I have became a stay at home mother, a mother to a newborn (she is growing fast!!!), and a teacher - started homeschooling with in the past month. I am constantly looking for ways to go a little greener. So I have also began to cloth diaper and make my own baby food. I love how God is changing me daily!

Saturday, April 9, 2011

Zookies Cover Winner!!!

We have a winner!!!! YAY! I am excited to announce that the winner is:

Nikki !!! and she said "follow zookies on twitter...."

I am emailing you right now so check you email in about 10 minutes:) You have 48 hours after I send the email to respond or I will pick another winner. (* picked this winner #48.) I hope that you all had fun. I hope to host another giveaway again so please check back and see what we are up to!

I also want to say thank you to all that joined my blog during this process and I hope that you continue to follow:) Have a blessed day!

Tuesday, April 5, 2011

Days 21, 22, 23 ~ Spring Challenge

Day 21~ a photo of something that me happy...

These wonderful children that God blessed me with make me the happiest person in the world. I can just sit back and watch them and I know that are the best thing in life:)

Day 22~ A letter to someone that recently hurt me...

I am usually a private person. The letter that I would write today I might regret later. I prayed about this and I am not ready to actually write this but one day I will. When I am ready then God's love will be poured throughout and they will know that even though they have hurt me I have forgiven them completely.

Day 23~ Something that I don't think anyone knows about me?....

Hmmm...I can't sleep if my husband isn't home. I know that it is silly. But I practically beg people to come and stay with me. I just can't sleep. I need him (or someone else) to be here with me. I "sleep" but I can hear everything around me. It is more like a out of body I don't like it when he leaves:( Thankfully he doesn't do this very often.

Sunday, April 3, 2011

Day 19 & 20 ~ Spring Challenge

Day 19 ~ something that you hope never changes about you...

I thought about my personality. I love to make people laugh. I can't stand to see someone down. I love to laugh. My husband and I can sit for hours and crack each other up. I love that the most. I hope that I never lose that side of me. I love to make my children laugh too! There is nothing sweeter than watching them crack up over you being silly with them.

Day 20 - The meaning of my blog name....

I originally was "Laughing with the Harris Family". I thought it could be a little corny? So over the months I have played with it and finally settled with "Coffee and Laughter with the Harris Family". I LOVE coffee and I LOVE laughing (see above:)). I see blogging kind of like a bunch of girls getting together. I think about what I love to do with my friends when I have time alone is to go get some coffee and talk...whether it is serious or us just having a good laugh:)!