Sunday School!

I LOVE CHURCH!

This past Sunday I showed up to hang out with two boys! Mommy stayed with me while daddy played his trombone in the orchestra. We had so much fun playing. Haden can pick up big toys!

Thank you Miss Barbara for holding me in the rocking chair...it was so sweet!

I LOVE ALL OF YOU!
Maggi

Maggi Diagnosed with Trisomy 9 Moisaic Syndrome

We attended Genetic Counseling at the end of May and discussed Maggi's diagnosis. Maggi's Chromosome 9 tripled itself during the seperation of cells during conception...there are 16% of 300 cells that carry the triple Chromosome 9. This is what we have been waiting for...the answer to the big picture of small tiny pieces of sicknesses.

Trisomy 9 Moisaic Syndrome typically means short life expectancy, however, Maggi is the first with the lowest percentage of 16, which means we can't determine how long she will live...we just know she is 84% NORMAL! There are many symptoms of this, so I have included a web link:

www.trisomy9.com

Please keep Maggi in your prayers. We have been trying to get her casted for her back braces she'll wear for one year to maintain the scoliosis and insurance has not cooperated too well. We are on a two week wait, at least for now. Also, Maggi is expected to walk, but we don't know when. A seating system will be designed and fitted for her with the back brace, so pray that insurance goes through on those items, too.

I will discuss in further detail later on Maggi's Genetic findings of her Trisomy 9 features.

We love you all and wish we had better news. We assure you Maggi is a fighter and has cut her 8th and 9th teeth this weekend! She is saying "MAMA" like crazy and flipping around the floor...rolling over completely is next~

We love you all,
Donna

Laughing Matters Benefit Show

Wow, what a wonderful response we had with our auctioned items, so a BIG THANK YOU to everyone who donated and participated in the purchasing. The cast of all men brought many laughs to everyone there. This was a fun night to be out, relaxing and giving insight of Trisomy 9 Moisaic Syndrome to the fans of Laughing Matters. We raised almost $900.

THANK YOU to LAUGHING MATTERS, Tommy Futch, Robert Drake, Sloan Hayes, Gary Anthony Williams, Mark Harris, Mark Farley, Mike Schatz, and Jamie! Oh, and don't forget Manuel's Tavern, too!

We appreciate everyone coming out and hope you spread the word around when we have the next one!

We love you all!
Donna, Patrick, Maggi, Zack and Michael

New Website on the Way!

Hi, everyone! Daddy is working on my website and it has the cutest picture of me sucking my passy! This is new and improved and will be fun for all of you with links, pictures and my old blog stuff, too!

Stay tuned and bare with us, my daddy is working so hard! I LOVE HIM!

Maggi

Brothers & Cousins, Oh My!

LOOK at how happy we are, all cuddled up on mommy and daddy's bed. These kids were so sweet to me and helped out a lot! They made me laugh so hard and I can't wait for Kala, Evan, Brooke and Melany to come again. Zack and Michael are my big brothers and I get to see them every other weekend...they are a blast! I LOVE THEM ALL!

Happy Mother's Day!

What a first year of being a mommy to Maggi - my first couple of years as celebrating was as stepmom to Zack and Michael. Last year the boys did not get to meet Maggi until she was about a month old because of being in NICU.

On Mother's Day, after church, I took some time to rest outside on the deck and looked up to the sky. Looking back on last year and how I sat out here in tears, crying to God to please take care of Maggi. It seemed like every waking moment we wondered if she would live.

A year ago we had no idea how sick Maggi really was. We didn't know she had any type of deformity, we had yet to see any specialists when we brought her home from NICU Mother's Day Weekend of 2005...we were mainly trying to keep her breathing and eating, on tons of meds and going on no sleep...then May 20th rolled around and we found out she had Craniosynostosis...then, June she almost died of a Reglan overdose...then, August with her surgery....the holidays came and we found out she had Scoliosis and a Tethered Spinal Cord...February she has surgery to release the cord...a few days later, back to Scottish where Maggi almost died of the Rota Virus. We can't count how many appointments she has had, we don't know how many emergency visits to Scottish there were...but we know this now: Maggi is a Miracle. God has taught us so much through the challenges and pain. It is amazing that she has handled everything so well, even better than us. We will continue to accept what comes next, will be patient to hear her speak, to see her sit up, crawl or walk...no matter how many years, we will be patient.

Happy Mother's Day to all of you moms and give your little ones a hug from me. Also, Happy Step Mother's Day to all of the stepmoms of the world...I have the best two step sons in the world. When I married Patrick I received two beautiful gifts, Michael and Zack...Happy Mother's to their mommy, too!

Much Love,
Donna

Stuffed Toy Donations in Maggi's Honor

For Maggi's One Year Celebration, we asked friends, family and church members to drop by a new stuffed animal, with the tag still on.

We will be donating all of the animals to Scottish Rite Children's Hospital of Atlanta. Maggi has received stuffed animals as a gift when she has had to have testing done, etc. while at Scottish. It makes a world of difference for us and we thought we would give back. All of the sick children who come through their door deserve a chance to smile...and what a perfect way to celebrate Maggi's first year of life, making it to one year old!

We don't mind if you would like to join in on the effort...just let us know!

So, here is Maggi and the donations we have gotten thus far! Thank YOU everyone, we LOVE YOU!

Finally, an Update!

Well, we have been so busy with all of Maggi's annual check-ups with all of her specialists that we have not had time to udpate the site!

We just celebrated her first birthday with family, friends and church. Maggi didn't get to eat cake, but she loved the icing! She did great around everyone and never cried...she is such a great spirit. We are beginning to think she loves to be in the spotlight.

Here are some updates...

Genetics: We finally got the bloodwork sent off for testing. It will take another four to six weeks to get any results. Dr. Uhas is certain Maggi has a syndrome, however, the fistula (tear duct outside of the eye) is pretty rare and she said that there is a possibility that there is not a name for what she has yet...but, we pray that we get some type of answer.

Orthopedics: May 18th we will be taking Maggi to Orthotics to be casted for her two braces. This is going to be the most challenging part of her care yet. Poor thing will have wear one at night during sleep and the other during waking hours...another words, 24/7 for maybe up to one year.

Physical Therapy: What can we say? WE LOVE IT! We have gotten over watching her struggle, but she is really blossoming. She is loud with laughter and holding herself up straighter when she is in your arms. We adore Miss Debbie!

Speech Therapy: Maggi still hasn't gotten down what it is to CHEW, but she is eating more and that is a great thing. Tonight she ate two 4oz. jars of food and then 3 oz. of formula! She has a little frog belly and Miss Heather will love that!

Pediatrician: Maggi did great at her one year, cried with her shots, but Dr. Goza says that Maggi is looking better and better. Dr. Goza feels like we do...she sure has had a hard year. Her weight is in the 3-5 percentile and her head is in the 96th...so, imagine how hard it must be for her to be so underweight and holding up such a heavy head.

Be sure to look at the photo album. We love all of you and hope this finds you well!

Donna & Patrick

Daddy Plays Softball at Church!

McDonough Road Baptist Church Softball!

This is the most fun I have had in a really long time! I had no idea that daddy could play softball so well! He can run really fast, too! Everyone from our church that came to cheer on our team was so sweet to me! I got a lot of good loving from everyone...oh, I think I am spoiled!

We have games on Thursday nights and I can't wait for the next one, I just know we will win!

LOVE!
Maggi

Uncle Jesse and Miss Charisse

Fun with Family!

Uncle Jesse came over and brought Miss Charisse and her daughter, Alanna. Alanna had a really sweet friend with her, Frannie! They played outside with my big brothers and had a lot of fun this Saturday!

Daddy and Uncle Jesse played their guitars and sang to us. Oh, we had such a nice time. I really liked Miss Charisse, she was so sweet and loving with me...she held me just right!

We can't wait to all get together again!

Maggi

Physical Therapy Began 3/31/06

Maggi went for her first PT visit with Miss Debbie at Scottish Rite. We learned so much and also, cried a little. It is tough watching your little one struggle at things that are challenging physically, when you know that it something that they should already know how to do without a problem.

We learned that Maggi is on a One to Two Month Developmental Level during this session. It was a shock to us, as we had expected maybe a four to five month level. Now we know what we need to work on with Maggi and can help her improve daily at home with the exercises we are learning.

Maggi does not have a lot of muscle tone, as can be expected. She is holding up her head well on her own and has yet to achieve complete "sitting up" by herself. Because of the weight of her head and the scoliosis, Maggi tends to "stack" with her head, sitting back and into her neck/shoulders. It is so important that she learn how to use her muscles to keep her head "midline", which will provide her stability and it will eventually increase her mobility! How exciting!

Well, she is a fast learner and Miss Debbie saw a major improvement within one week. She praised us for working so well with Maggi at home. It would be so nice to have one of those EXTREME HOME MAKEOVERS and have a room just for Maggi with all of the special equipment she needs to improve physically and with eating. We have become quite creative in building our own little wedges and things...

Maggi also got the thumbs up from speech therapy to experiment with different textures, allowing her to learn how to chew. Maggi tends to suck and not chew because she simply doesn't know how...so, we are presenting all kinds of cool stuff to her...supervised! Carrots, twizzlers, french fries, dried fruit and veggie puffs. We are so proud of her, she really tries hard and is such a fighter.

We love all of you and hope that you continue to keep her in your prayers as we head back to Scottish this week on the 13th to have her EKG, Ecocardiogram and Renal Ultrasound done. Also, her bloodwork will be done and sent to Philadelphia for testing.

Keeping the faith,
Donna, Patrick, Zack, Michael and Maggi