Wednesday, March 23, 2011

Week 3

For you bottomliners, here the skinny for this week:
-- I'm currently doing Hannah's exercises by myself and she is cooperating minus a few silly moments.
-- As of this post, Hannah is taking 14 capsules, 2 doses of fish oil, and 2 doses of B-complex daily. We are working up to 28 capsules, fish oil, b-complex, and one dose of 3 other powdered supplements daily.
-- She is using more and more language everyday.
-- She is not as fearful of the essential oils and other strong fragrances that we are trying to get her to smell (ultimately closing her left nostril and smelling through her right)and in fact picked up one of the cotton balls and smelled it herself.
-- She is being very playful with Abby and the past couple of days Abby has actually helped with some of her exercises and did some with her.
-- She is calmer when go out to eat and other places where there is lots of noise and people.
-- She is consistently mimicking our facial expressions.
-- Overall, she is still Hannah but a much happier and more socially engaged Hannah

And for the rest of us:
Monday was hard but it always is. I woke up with the immediate low after the high I felt when she told me she loved me.

Wednesday, Steven told me that he really wanted me to try the exercises by myself to give him some piece of mind because he was leaving on Monday, the 28th and we didn't have anyone to consistently help me with them. I did them by myself that morning. She did relaxed...just letting me do my thing. We were amazed and comforted. She is doing Pretzel by herself most of the time now. That's a hard one for her!

I knew giving her supplements would be hard but I tried not to think about it and they have been sitting on my fridge staring at me long enough. I knew I had to start somewhere. Tuesday night I tried to give her the powdered version of amino acids mixed with water. She gagged and it all came up. I was so discouraged; it happened just like I had anticipated; however, in the middle of the night, when I sometimes do my best thinking, I realized that instead of chewing she had started swallowing the jelly beans that we had given her earlier in the week. If she could do that I could probably switch to the capsule version of two of the supplements. So we took a couple of days off of the aminos and multi-vit so I could talk to the nutritionist about it.

Friday I saw the nutritionist at BB to go over Hannah's blood/urine test. I was so depressed when I left there that I went home and took my first nap since I've been here. It was only about 30 minutes but it was nice. There was something different about that depression than the depression that I've struggled with for years; it wasn't really depression that comes with wondering how to find the balance between hope and fighting for my child's future and accepting God's providence in our lives. God has brought us so far in our faith/trust in Him since this trial began. He has brought us so far just in the last 3 months! I woke up from my nap believing that God was going to help us get 28 tablets, fish oil, b-complex liquid, and 3 other powdered mixes in Hannah's body at the right times everyday. In fact, if Hannah could stop gagging then we could switch to the powdered version of 2 supplements and cut the tablets down to 1/day. That would be our goal. We will just work into it. She fights and wines and acts like any kid that is fearful of something, but eventually, she picks the tablet up and puts it in her mouth and swallows it. She gags but it goes down.

Hannah continues to surprise us day after day. After I had my melodramatic (I use this term because my depression seems unwarranted in hindsight) meltdown on Friday, Hannah completely takes Steven and I off guard Saturday night. She apparently wanted a nectarine very badly because when I laid four capsules on the table and told her that if she took them (she had already taken 10 by coercion plus fish oil plus b-complex liquid earlier) that I would give her that nectarine. She went right over to the table and downed them one at a time like any typical child would down four M&Ms. Steven and I are still laughing about it and wishing that we had this on video.

Today we went to Wildside Exotic Pets and Hannah pet a large lizard and seemed to be in heaven with all the creepy animals in there. The owner was very friendly toward children and there was a nice lady in there that had a baby bunny in her pocket. Hannah and Abby were mesmerized. Abby wants a lizard, bunny, terantula, and everything she saw...God help us. Here's a couple of pics:

Steven is leaving Monday. I don't know when he will be back. He's my partner, my encourager, my sounding-board, my lover, my best friend. In one sense it will be easier when he's gone from a laundry, meals, mess stand-point. He and Abby won't be butting heads. In another sense the nights will be lonely and he and Abby won't be butting heads! lol What a perfect time to be away from each other with Facetime and Skype and Facebook and the like. Maybe we will fall in love all over again...from a distance is how it happened before!

Sunday, March 20, 2011

Week 2

This week has been packed full of blessings. My cup is overflowing with joy and excitement! The progress that Hannah has made is so unexpected that it drowns out the hard times.

This week we noticed that Hannah was putting her seatbelt on herself. Now, we just say "buckle up!" and she does it! It turned out to be perfect timing because GA has a seatbelt law and it can be the primary offense. The PO-PO busted me without mine but my three lil chillins all had theirs on and were sitting up so nicely. He thought he was going to kill a few birds with one shot but not this time! I just decided to revel in the irony and enjoy the fact that my sweet daughter who has always struggled with fine motor skills is actually putting her own seatbelt on!

She has been doing her primitive reflex exercises so cooperatively this week. She is making our job so easy! One exercise in particular we call "elephant" because she has to get on all fours and move her head up and down in a timely manner. Her back is supposed to be straight and she is not suppose to drop her shoulders. As of a couple of days ago she is doing it perfectly! Soon, Amanda, the director of BB is going to test Hannah's primitive reflexes and perhaps some of our hard work will pay off because some of the reflexes may be gone which is what we want. We know we are getting close with the Galant reflex because she is not peeing in the bed as much as she did before.

Friday, she ate her first Jelly Belly! She liked it and ate about 10 more. Before she would not even touch them!! She is not supposed to have much refined sugar but it's so wonderful to see her enjoying the things that other children (and adults) enjoy. In fact, today in church, Steven, Abby, and I were eating tic-tacs and I offered one to Hannah. She ate it! Amazing!

On the downside she is picking her sores and making them bleed and wiping the blood on her pants...yuck! Monday, I had just changed her clothes to go out and she snuck back into her bedroom and did it again. There was blood all over her pants. I was angry and said, "What the hell!!" (unfortunately, I admit that with all the stress over the years, I have picked up a profanity habit that I am trying to break). Now, she says "What the heck!" and giggles. Apparently, I have said "what the heck" enough that she picked that one up instead of the other one. She is totally trying to push my buttons.

And to top off the week she was lying in my lap this morning and said just as plain as day, "I love you." I couldn't believe it but there was no denying what she said. I tell her that all the time and sometimes I have her repeat after me and when she is compliant she says, "I yu-you." This time it was spontaneous and not repeating after me and completely unsolicited and so clear..."I love you"! I can't tell you how much that energized me to press forward and work harder on her home program. I want more of the real Hannah!!

There have been some hard times this week as well. She doesn't have any social boundaries. She throws balls at people's heads at Jumping Jelly Beans. It's hard to make her stop. She is just trying to play. Most people are really sweet about it but it causes me a little anxiety. She honks people's noses and it hurts! She hugs strangers (which is kind of sweet). Unfortunately, one lady in the restroom didn't think it was so sweet, because she said "Excuse me??" in an admonishing tone. I told her that I was sorry but Hannah has Autism and she cut me off and said "hmmph" and stuck her nose in the air. Hannah was just trying to say 'hi' in her own way. The lady just walked out and I wanted to kick her bum on the way out but I held back. She must live too far in the country to have ever heard such thing as 'Autism'. Poor her. Steven comforted me by reminding me that I don't know what she was going through and I needed to just be gracious. I tell my kids that all time but I needed it that day.

Today we went to Dekalb Farmers Market in Decatur, GA because we heard that the organic produce and nitrite-free meats were very reasonably priced there as well as having a variety of non-preserved, no-msg, bla bla bla packaged food there. I'm trying to follow the nutritional guidelines that BB has laid out for us. That place is unbelievable! It was like an international extravaganza of food. I bought cumin for 55 cents! There were people everywhere (very popular place). It was a 45 minute drive but I saved so much money that I'll probably go once-a-week.

Thank you all for your prayers and words of encouragement and tears of joy that you have shed for and with us this week! We love you, friends!

Saturday, March 12, 2011

Week 1

We're here! Still settling in...still things that need a home, still getting adapted to apartment living (no screaming and yelling, no stomping through the house, etc). We met our neighbors under us and she, being the southern gal that she is, apologized for the way she looked while stepping out to get the mail and I apologized for the screaming, yelling, and stomping. She was sweet and seemed understanding. I'm not so sure about her elderly father (poor guy)!

We found a wonderful preschool for Abby where her creativity will be stimulated and her need to connect with other kids will be fulfilled. She is having a hard time so far. We are having to do alot with Hannah and are trying to include her when we can but she is acting out. Next week she will have a full week of what life is going to look like for the next 2 months and that should help. She had her first violin lesson Wednesday night and she is really excited. Carriage Lane Presby has an art academy and we found this teacher through them. Steven thought we could all go to Abby's first lesson together (I didnt agree but was trying to be agreeable (haha)). Hannah had a tantrum in the waiting area because she couldn't roam throughout the house. Mrs. Kay is a dear lady with lots of grandmotherly wisdom and gentleness. She was asking about Peyton and I said, "she's our angel". Kay said, "You needed an angel, don't you." Little Peyton gave her a big smile and I held my breath in order not to break down during Abby's lesson.

Peyton is adjusting wonderfully by sleeping 12 hours for 5 nights in a row. What a gift! She is always smiling and happy and sucking her thumb for comfort. God always knows what we need!

Steven is trying to work and sell real estate as always, but having to help me with exercises and general taking care of the girls as well. We have our spats, but we are drawing closer together through this struggle and not having cable or Netflix, our comfort at times we admit. I have my glass of wine every night and we talk about the day, the future, and by God's grace we even talk about how blessed we are. It truly is amazing how through stressful times, we truly feel the prayers of our brothers and sisters in Christ. God gave us special grace to get through the first week of BB.

The week started with a group of guys from Carriage Lane and my dad moving us in. Steven likes the church. I have not attended yet, but plan to get plugged in as much as I can next week. I am a little hesitant to get "plugged in" because I want to remain focused on what we came here to do and BB is a 7 day a week program. I want to get the job done and get back to our life in Colorado.

The BB program is very surprise there. I can't go into the details of the BB program because it is just too much to type, but in summary, Hannah went to BB Monday, Wednesday, and Friday for one hour. In that hour, she was in the sensory-motor room where they did multiple activities that stimulate her brain, specifically strengthening her right hemisphere. We heard some screaming during the second half of the session and they said that is when they are doing tactile stimulation. Our part at home is difficult to say the least. We start out in the morning doing her primitive reflex exercises and then several times throughout the day we have to do a plethera of other activities to stimulate her right hemisphere and block the left. We have not seen any changes yet, but then we didn't expect it so soon either. They want us to do the blood/urine test again because the last one was almost a year ago. We pushed back on the blood and they accepted blood from her finger rather than our having to take her to a hospital again. We did that this morning and are expecting a knock on our door from child protective services any minute! Fortunately, we were able to get her urine the old fashion way which was such a blessing! We will get the results back soon which will expose vitamin/mineral-deficiencies, amino acids, etc. Friday night I had to go to BB nutrition class and they gave us some supplements to give Hannah. I just laughed to myself and prayed that the Lord would work this out. 9 capsules twice/day plus powder in juice, bla bla bla. Hannah has never taken a supplement in her life. She won't even keep cold medicine in her mouth. No high fructose corn syrup, no french fries, no msg, yada yada. I'm thinking there is just no way but God is bigger than all of that so we'll see what kind of parting-of-the-Red-Sea kind of moment he will give us there. Ha! We are speaking with the director of BB to brainstorm on ways we can help her work toward getting the supplements in her system among other issues with the program.

Overall, the week was exhausting but good. We were able to get many of the activities done with Hannah as well as our other responsibilities and have a little fun as well. We're looking forward to this week as it will provide a little more structure for the whole family and Hannah will be that much closer to her improved state!