10/29/09 Mattie update

I don’t have a lot of new information. I will update everything as I know more.

Mattie will be going in for a resting metabolic rate test on November 18th and then meeting up with Dr. Shoffner (the molecular geneticist). The following day we will be in the hospital having an open muscle biopsy and spinal tap.

I am still waiting to hear back from Dr. Betz about our visit to Philadelphia in December. It will be the week of the 13th or 6th. They were trying to talk me into going the week of Christmas. I am really hopeful that they will be able to make one of the other dates work.

Please let me know if you prefer reading the updates on my blog www.shellyplus4.wordpress.com or on CarePages. For those of you that are on Facebook, the updates from my blog automatically post to my notes section.

Hugs,

Shelly

 

Mattie update 10/09

This is an update from Mattie’s care page. I am thinking about moving everything over to my blog. Many of you have told me that you don’t like having to log in to read the updates on Care Pages. Let me know what you think.

Thank you to my many friends that have sent reminders to update Mattie’s page. Life has been a little crazy and I am really behind. Steve had meningitis for a few weeks and we have been super busy with the kids schooling. Mattie has had several updates. Hopefully I will remember everything. We have started attending private physical therapy again. Mattie enjoys seeing the therapist, but is over doing all the hard work. We are working with a therapist through GVA, and also privately. She is getting a double whammy. The therapists are working with Mattie to strengthen her core, reduce pain, and stretch out her hamstrings. She continues to see the school OT and SLP as well. The occupational therapy evaluation brought a bit of a surprise. Mattie has lost a good bit of strength in her hands since her last evaluation 2 years previous. This alarmed all of us. Mattie’s doctors ordered an MRI to see if she was having some sort of spinal cord involvement. The MRI was clear. We contacted her neurologist to figure out what to do next. She suggested that with all of our unexplained symptoms that we should go to see a molecular geneticist and have Mattie checked for Mitcohondrial Myopathy. We have started the process to get in with a specialist. The process is very involved. They will not give you an appointment until they have looked over all medical records and have collected a complete family medical history. I have submitted the paperwork and hope to hear something soon. If they do decide to see Mattie she will also have to go in for some very extensive medical testing. She will have a muscle biopsy, spinal tap, and lots of other goodies. I am not looking forward to the testing, but it would be nice to finally have an answer. (Mattie is not aware of any of this. If you see her please do not mention it. We will tell her once we know that it will be happening for sure.) We also had a trip to the pulmonologist. I was very hopeful after our last visit that we would be able to stay off of all of the medications we have been weaning off of over the course of the last year. The pulmonary function test did not go along with our plans…. Mattie left with 5 new prescriptions and was a very unhappy girl. It is still hard for me to wrap my mind around the fact that she has asthma. The only place she has had an asthma attack has been in the hospital after anesthesia. The last appointment makes me realize that she really does have asthma and we need to be better about watching her breathing. We will be heading to Philadelphia in Dec. She will be seen at spine, hand, and leg clinic. They keep changing the dates. I will let you know when we are going as soon as they let me know. Thank you for your continued love and prayers. I will update more as I can.

Shelly

Walk 4 Hearing

This Saturday our family will be participating in the Walk4hearing in Martinez Georgia. Walk4Hearing™ events are fundraising 5K (3.2 miles) walks to be held in over 20 locations across the United States in 2009. Since its formation in 2006, Walk4Hearing has raised over one million dollars for programs and services for people with hearing loss, and has grown into the largest awareness and fundraising event for the Hearing Loss Association of America (HLAA). Collaborating with local HLAA chapters, Walk4Hearing™ educates the general public about hearing loss while easing the associated stigma. Striving to make hearing loss a public health issue, thousands of people of all ages, races, and backgrounds have come together to display their compassion for the cause and to make hearing loss an issue of national concern.

As most of you know, my daughter Mattie was diagnosed with a hearing loss when she was 2 years old. Steve and I  noticed that Mattie had trouble with directionality and understanding.  With additional testing it was discovered that she was completely deaf in her right ear and have a mild rising to normal loss in her left ear. Over the course of the last 7 years she has used several different hearing aids. In September 2008 Mattie had implant surgery to be fitted with a B.A.H.A hearing aid. She was finally able to put the processor on in December 2009. It was and still is amazing.

We will be participating in the Walk4Hearing. We need your support to make this event a success. Please take a moment to sponsor our efforts.  Every dollar is a blessing not only for Mattie , but for many with a hearing loss.  If you would like to also join us October 10, 2009, please let us know.  We would love for you to join our team  in the WALK4HEARING.

Many Blessings and Thanks for Your Support!

If you feel able to sponsor me in this Walk, you can safely use your credit card online or you may send a check by emailing me at ShellyPlus4@gmail.com for my address.  To make your tax deductible donation online follow this link to our team page. If you do donate please donate on Steve, or one of the kids pages. I have already hit my goal.

Any amount, no matter how much, will help HLA reach its goal!

 

Thursday 13

okay…. it’s Friday… but it has been a really long day.

Thirteen Movies I Like

1. Fiddler on the Roof

2. As Good as it Gets

3. Anna and the King

4. Schindler’s List

5. Seven

6. Shawshank Redemption

7. The Green Mile

8. The Princess Bride

9. What Dreams May Come

10. Under the Tuscan Sun

11. When Harry Met Sally

12. The Silence of the Lambs

13.Somewhere in Time
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Thursday Thirteen

Thirteen things I need to be better about doing.

1. Quiet time. I pray, but need to be better about spending time in God’s word.

2. Planning out our meals. I seem to be putting together a lot of our meals out of what I find in the pantry last minute.

3. Putting papers away when I get them.. I love to stack.

4. Keeping up with the laundry… it is never ending.

5. Deleting email… I have over a thousand waiting to be cleaned out.

6. Delivering Avon catalogs… (not my favorite part of being an Avon lady)

7. Keeping up with my schedule. I would be lost without my calendar.

8. Holding my temper.

9. Sending thank you notes.

10. Going to bed at a decent hour.

11. Being positive. The glass is half empty… umm.. I mean full.

12. Finishing what I started.

13.
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The p

+urpose of the meme is to get to know everyone who participates a little bit better every Thursday. Visiting fellow Thirteeners is encouraged! If you participate, leave the link to your Thirteen in others’ comments. It’s easy, and fun!

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The “S” Word

okay… so my rock recently got chipped.

Today James was playing around singing nonsense words (trying to merge the words shush and quiet) and belted out sh*t at the top of his lungs.  Completely caught off guard, I reacted poorly. It isn’t like I broke out laughing….but all it took was him seeing me trying not to crack a smile. This immediately signaled to him that this was a word that should be used regularly and was probably a no no.  I explained to him that this was one of the dreaded cuss words and advised him not to use it.

When Steve got home and we sat down to dinner the topic was brought up again. James wanted to know what the word meant and asked Steve to explain.  We told him it basically meant poop. He followed that up with “Chloe went out back and took a sh*t”.  Heaven help me.. He even used it in the  proper context. Then he asked us to tell him what all of the other cuss words meant. (if the first one you learn is a potty word, they must all be good, right?) We told him it was a topic for some other time. He assured us he didn’t want us to tell him any of the words, just what they all meant. Steve deflected the question and gave the kids a lesson on the origin of words.

The girls had no idea what the word was, or what it meant. Leave it to a 7 year old boy to figure out what an 11, and 9 year old girl had never heard, even with a few years of public school.

 

Wordless Wednesday

Back 2 School

We are going to slowly crawl back into school over the next couple of weeks. I am having the kids do one or two subjects a day. I don’t want to overwhelm them or rob them of the end of the summer… but I am so ready to get back into a schedule. I have to admit that I am not a huge fan of summer vacation. I am always ready for the break at the end of the school year, but I wish we could school year round with random weeks off during the year. The long break kills me.

The kids were with their Nana and Opa Monday, Tuesday and part of Wednesday. Thursday I decided we would start back with one class. I thought it might be easier for the kids to get into the rhythm by slowly ramping up school. We will add a class a week. During the school year the kids are supposed to keep up a certain percentage of school work done a month. I will not be reporting any of our summer work until after school starts. This will buy us days off for field trips, lazy days, and doctor days.

I have to say I was really surprised at what we lost over the summer. I am normally really big on doing Summer Bridge books, or keeping some sort of school work going. This is the first time that we have taken this amount of time off. When we started back Thursday I was taken aback by the loss of some of the skills. The kids started off where we had finished last year and they still needed a lot of help.  It seems the trips to the library, reading tons of books, and a bunch of National Geographic videos are not enough… lol. Lesson learned.. next year we will go back to the Summer Bridge books, or school year round.

We did manage to keep our normal wake up time over the summer. This will be one less battle as we work our way back into a school time schedule. The kids have continued to take Piano lessons, and Alyssa is still taking Choi Kwang Do. I hope to get a schedule worked out we can all be happy about in the next week or so. The kids seem to thrive on a schedule. James in particular really likes to be in control of his time and not get told every five minutes what to do. I think putting the schedule in his hands gives him a feeling of power. He can figure out what to do on his own.

I hope to add in a few more field trips this year. I was a little overwhelmed last year. I made sure that the kids got to go to most of the fun field trips. We made it to a lot of park and skate days. I would like to add some of the educational trips in this year. I am really going to try to take advantage of some of the on-line Elluninate sessions (on-line classes) this year. We skipped them last year and I think the kids might enjoy learning from someone other than me every once in a while.

I am excited about all that this year will bring. Seeing the kids CRCT results from last year has confirmed that I in fact did not manage to dumb them down. We are safe for another year. (:

I would love to hear what kind of schedule you keep with your home school/virtual school crew.  I still need to figure out where/how to fit in chores, quiet time, school work, piano practice, etc..

Thursday 13

13 things I like about virtual school.

1. It is all put together for me. ( I am hugely unorganized)

2. The cost. (you can’t beat free, and it allows me to supplement)

3. Accountability(I like knowing that we are being checked up on)

4. I love all the amazing friends we have made.

5. Watching my children grow.

6. Not having to answer the “Mommy what does Sh*t mean?”. I Love that the S word is still Stupid.

7. Spending quality time with my kids every day.

8. Still being in bed when the school bus goes by.

9. Doing our school work in P.J.’s.

10. Counting trips to the doctor’s office as health.

11. Quality “socialization” (on our time, on our terms)

12. Not having to buy $100.00 in school supplies for the rest of their class.

13. I get 2nd place for teacher of the year. (Mattie will be forever in love with Ms. Speegle)
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Wordless Wednesday