Maggi Blair - News & Updates

Sunday School!

2006-07-28T02:35:00.000-04:00

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

2006-07-26T04:31:00.000-04:00

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

2006-07-26T04:21:00.000-04:00

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!

2006-07-22T15:16:00.000-04:00

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!

2006-07-20T02:14:00.000-04:00

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!

2006-05-15T22:43:00.000-04:00

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

2006-05-15T22:36:00.000-04:00

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!

2006-05-15T22:25:00.000-04:00

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!

2006-04-10T00:30:00.000-04:00

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

2006-04-10T00:22:00.000-04:00

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

2006-04-09T23:58:00.000-04:00

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

Genetics - March 24th, 2006

2006-03-31T22:22:00.000-05:00

We followed up with Dr. Uhas at Scottish Rite for our genetic concerns for Maggi. Dr. Uhas examined Maggi from head to toe so that she could note all of Maggi's "syndrome like" features.

Naturally, blood work will need to be done, as well as a few other tests. Dr. Uhas noticed quite a few characteristics and noted them. Also, she took some pictures of Maggi to hang up in her office to review daily.

Maggi definitely shows signs of a syndrome. Which one? Only time will tell after all of the blood work is sent to Philadelphia. It usually takes 6 or 8 weeks.

Maggi not only has CRANIOSYNOSTOSIS, PLAGIOCEPHALY, DEVELOPMENTAL DELAYS, SCOLIOSIS, and REFLUX...she also has the following physical characteristics:

1) Deformed Thumbs (they are "finger like")
2) Deformed Toes (her big toe almost looks "jammed" into her foot...hard to describe)
3) Tear Duct is outside of her Left Eye (it is actually on her skin, underneath her eye)
4) Right Leg turns inward
5) Joints Pop
6) Possible hearing issues in the right ear

Only one syndrome was mentioned, naturally it is a "shot in the dark"...but we are going to just wait for testing. Dr. Uhas has recently seen a couple of children with the "Levy-Hollister" Syndrome and they have some of the same deformities as Maggi. Two of their major issues are kidney and heart problems. Dr. Uhas ordered testing for Maggi's heart and kidneys to be on the safe side. WHICH WE TOTALLY AGREE WITH.

UPCOMING TESTS - April 13, 2006
Ecocardiogram
EKG
Renal Ultrasound
Blood Work for Genetic Testing

UPCOMING DOCTOR VISITS
Opthomology - April 4th, 2006 (Maggi is having problems with Right eye)
Orthopedics - May 18, 2006 (follow up on Scoliosis)

11 Months Old!

2006-03-30T00:10:00.000-05:00

Hey, Everyone! Isn't it GREAT? I am only ONE MONTH AWAY from being a big girl! One Year Old! I can not wait for my birthday! I Love All of You! Look at my new pictures, too!

Maggi

Eating Like a Big Girl

2006-03-18T16:10:00.000-05:00

Look at me, eating a cookie! It sure is good! My top tooth is coming in and it sure does feel good to rub it on my gums!

I love all of you!

Feeling Tons Better!

2006-03-08T23:06:00.000-05:00

Look at me in my BeBe Pod!

This is the greatest thing my mom and dad have gotten for me in a long time, it actually helps me sit up all by myself!

Finally, I am feeling tons better and am trying to handle all of these kisses my daddy and mommy keep giving me. We have a lot to celebrate!

Thank you for praying for me while I was really sick in the hospital. I never want to be sick like that again and I hope no one ever gets that terrible Rota Virus! Everyone keeps telling me I am a little miracle and I truly believe I am!

God Bless all of you every, single day.

Maggi

Rota Virus

2006-02-25T21:24:00.000-05:00

Maggi's surgery went great and we could not have been more pleased with how well she was doing and how quickly she bounced back. However, while she was in Scottish Rite for her surgery, she was exposed to the Rota Virus.

The Rota Virus acts just like any other stomach bug. Maggi started with it on Thursday night, only four days after her spinal cord surgery. We took her to our pediatrician on Friday and it appeared to be the stomach bug going around that had kids sick for about 7 days. Maggi's fever did go down and we continued with the constant changing of diapers and she began holding down pedialite.

Saturday her "going to the bathroom" got to be so intense that we just put her on the potty like a big girl. Sunday comes and our little girl's skin has turned yellow and her eyes were sinking in. Keep in mind at this point, we had talked to all of the specialists and even called Scottish and we were instructed to let her "ride it out", unless anything changed and didn't look right. Her fever was normal since late Friday night and she kept some formula and pedialite down...but, when we woke up to this child being so sickly looking, we went to Scottish immediately.

There were five other cases of Rota Virus with children that had contracted it the week before, while at Scottish for something else, like Maggi.

We were admitted immediately and were able to have Maggi put into a regular room the following morning.

Our doctor was FABULOUS! He is the best we have seen yet at Scottish, Dr. Morris. He gave us the news that she tested positive at about 2am on Monday morning, while in ER. We stayed on the ER floor until a room was available. An IV of fluids were started immediately and we were told that the yellowish color of her skin was a sign of her blood being sick with the virus...yuck.

We got into our room on Monday around lunchtime. We were still changing Maggi's diaper about every 10 to 15 minutes. This went on all through the night into Tuesday. Dr. Morris came in on Tuesday to visit her, giving us the update on the bloodwork. Her blood was being checked every four hours to make sure all of the levels that were super high were going back to normal....which thank goodness, by Tuesday, they had.

At this point, the doctor had not said anything about Maggi "making it or not making it"...we just knew that an iv was how to treat this bug...we knew that this virus kills about 500,000 to 600,000 children world wide in a year. So, I asked him what would have happened to Maggi if we had waited until Monday...and he replied that she probably would not have pulled through. The virus had already started doing severe things to her blood and was causing the yellowish color to her skin and her cells couldn't do their job. Her body could not process the food intake and would just flush it right out of her body. The next thing, her organs would have started shutting down... He said the virus is more deadly in countries that don't have hospitals like Scottish, where families have to walk miles to get to a doctor. We are so blessed.

So, I will write later on how we felt when we learned Maggi might not have made it. It is too difficult to express right now.

We are getting settled in tonight and we are spending every moment disinfecting the house, washing clothes in hot water and being careful with her feedings. She is really tired and cries when she is touched...I can't imagine how her skin must feel to her... I can't imagine at all what she has been through... and I can't imagine what we would do if it turned out differently.

Thank you for your prayers and MUCH Love,
Donna

www.rotavirus.org

My Surgery

2006-02-19T17:53:00.000-05:00

My surgery for the TETHERING of the SPINAL CORD went fabulous! I did so great that I was able to go home the next day. Dr. Stevenson said that we may see immediate improvements in me and sure enough, when we got home, I did something I have never done before! Aunt Belinda made me an adorable teddy bear and I saw her in my crib. I got so excited that I made a really big surprise face and sound! Well, I have never done that!

During my surgery they put some type of protective plasticy thingy on my back and I had an allergic reaction to the glue in it, which made me blister up. The blisters look worse than the cut Dr. Stevenson made to fix my filum....wow, I love big words! So, mommy and daddy are getting those little blisters to heal around my cut and I am feeling lots better.

Thank you for all of your prayers, I have gained so much strength from your love. My parents love getting your emails, too! They read them to me and are going to put them all together in a memory book for me. Wow, I must be pretty special, huh?

Much Love to EVERYONE!
Maggi

Maggi at Church 2/5/06

2006-02-10T14:14:00.000-05:00

How wonderful to be with our church family again! Maggi is able to go from time to time, but not as often as we would like. Everyone was excited to see her and loved her helmet and pretty dress!

A prayer was led by our church that morning and it uplifted our spirits. We are so blessed to have their support, love and awesome prayers!

Surgery Rescheduled

2006-02-10T14:10:00.000-05:00

Monday, February 13th @ 2:45pm

We will post an update from Scottish Rite and let you know how Maggi's Spinal Cord Surgery goes. We are so prepared and also, very ready for this step in Maggi's heathcare to be done. The main concern is keeping her germ free, fattening her up and PRAYER!

Thank you for all of your emails, we love you!

Maggi and Her Helmet!

2006-01-13T15:57:00.000-05:00

We got my helmet!
It is taking some getting used to, but I don't mind it. I think I look like a real cute race car driver, don't you? Well, I should have to wear this for about three months. It only adds a little bit of weight to my head, it is just bulky. I rub it in the front when I am sleepy.

Happy New Year to everyone and look at my photo albumn! New pics from the holidays are there for you to see!

I LOVE ALL OF YOU TONS!
Maggi

Spinal Cord Surgery

2006-01-13T15:43:00.000-05:00

February 7th, 2005 @ Scottish Rite

Dr. Stevenson (neurosurgeon) will be performing surgery on Maggi's spinal cord to release the "tethering". She has what they call, "LIPOMA", which basicly is a fatty filum. Everyone has a filum that connects from the bottom of the spinal cord to the bottom of the spine. As you grow, the spinal cord raises up through the spine. Maggi's filum is fatty and is not stretching with the growth of the spine, which is causing the curve to get worse. Also, if the surgery is not done, paralisis would be the end result. In order to get to her filum, Dr. Stevenson will have to remove part of her bone. She will only be in the hospital for two days, lying flat on her back to assure that the spinal cord fluid stays where it should. When she gets home, he said that she can go back to normal activity. Wow! Amazing!

Dr. Stevenson is a character, he is super intelligent...as a neurosurgeon should be...but talking to him, it is as if he is doing an everyday activity like changing the oil in your car. Dr. Stevenson deals with spinal cord issues and the brain. Luckily, the two that he specializes in are the two main issues Maggi has. He did her craniotomy and is very familiar with Maggi and all of her needs, so we aren't as nervous for the spinal cord surgery as we were with the craniotomy. We are so happy that he is going to do the spinal cord surgery. We are BLESSED!

Please keep Maggi in your prayers on February 7th. We know that she will do very well and are confident in the staff at Scottish Rite.

If you have seen baby Noor on the news that had her surgery at Scottish Rite, there are clips of a nurse bringing her out of surgery. Well, she is the same nurse that assisted Maggi's surgeons for her craniotomy! We were tickled to see Robin carrying baby Noor. She is a sweetheart and we know what great hands baby Noor is in.

Well Wishes!
Donna

A Wonderful Turnout for the Benefit!

2005-12-30T18:43:00.000-05:00

Daddy was able to go to the Benefit on Tuesday night, mommy and I were sick with bad colds. It is moments like this that we realize how loved we are and how lucky we are, too!

The Benefit was held at Manuel's Tavern, with the organizing of Robert Drake and Tommy Futch with Laughing Matters. There were some really neat gifts donated for auction, too. In total, over $1100 was raised, about 49 people showed up! Daddy said that everyone laughed and had a great time. It is nice to know that everyone came out to have fun, to help me, and honored me in such a positive way.

Mommy and Daddy have the best friends in the world. Anytime they need something for me or my brothers and they can't provide it, their friends are always there. Funny friends, too! Mom was laughing when daddy told her some of the funny things they said on stage and mommy would laugh so hard she would start coughing again! I didn't understand most of what daddy was talking about, but I know it made my mommy smile.

Daddy is going to put up a list of all of the artists and people that donated items to the benefit. If you want to know more about the artists, you can find out that, too!

This is a big Thank You from me and mommy to all of you that participated and came to the event. We can't tell you enough how much it means to us and know that there are brighter days ahead. Just look at how much better I am getting and how happy all of you are making my parents!

Tommy, when can I start taking improv classes?
Maggi

My Visit to Scottish Rite

2005-12-30T18:19:00.000-05:00

Yesterday was the big day for my parents to meet with the orthopedic staff and for my helmet to be fitted.

First, the really good news!
Dr. Devito, Orthopedic Specialist, talked with my mom and dad about the scoliosis. He feels that the scoliosis is what they call, "infantile", which is different than congenital. It is also, less serious! How happy we were to hear that news from him. He said he didn't feel that the curve would need to be corrected with surgery, but with a night time back brace. They did another x-ray on my spine and it showed that the curve had increased since my last visit on 12/12/05. This did concern Dr. Devito, therefore, he wants Dr. Stevenson to move forward with surgery for the Tethering of My Spinal Cord. This will relieve the pressure that the spine is receiving and usually helps the curve to stay the same and often times, decrease!

We should have our appointment scheduled with the nuerosurgeon, Dr. Stevenson, by Monday. I imagine we will be looking at surgery to be really soon, like in January...simply because my spine continues to curve more with each visit.

Best News of All! Dr. Devito said he did not see any reason why I should have any problems with walking! That was the best news for my parents yet...I think they can handle my upcoming surgery better than the idea of me not being able to walk. Besides, I have two bigger brothers to keep up with that are anxious to have me play in their room...and mom keeps saying something to me about First Position, Second Position, Passe....

My Helmet
Mom and Dad pick up my helmet in two weeks. I will have to wear it for 23 hours a day for three months. They put me on this really neat machine that scanned my head with a laser light, to get the curves of my head. There were all sorts of designs to choose from, but mom and dad got solid white so that we can have a helmet decorating party! I think it will be nice to have my name put on my helmet. We did see other babies with helmets and they looked so cute. It is hard on the outside, but softer on the inside. I will have to go back to Scottish Rite at Fayette Hospital every two weeks to be checked and for any adjustments to be made to the helmet.

One Big Question for us!
What happens to me wearing the helmet when I am going to have surgery on my spinal cord? We will find that out when we talk to Dr. Stevenson. Not too sure if both can be done at the same time. We will have to keep you posted on my new attire as we go along!

Thank you for your Prayers!
Even though surgery is not the greatest option and we aren't looking forward to it, we did get better news than we thought we'd get. So, we stay positive and my mommy and daddy are hugging me, encouraging me, and praying with me everyday. See how much all of your prayers are helping? Your prayers help give my parents strength and help me get better.

We love all of you so much!

Maggi

Comedy Benefit for Maggi!!

2005-12-22T14:44:00.000-05:00

There will be a Comedy Benefit for me to help cover

the cost of my (possible) upcoming surgery.

Maggi Blair Comedy Benefit

Tuesday, December 27, 2005 / 8:00pm

Manuel's Tavern

602 N Highland Ave NE

Atlanta, GA 30307

404-525-3447

$15 cover charge

Laughing Matters (an Atlanta based improv comedy troupe)

will perform with special guest

Gary Anthony Williams

(Blue Collar TV, Malcolm in the Middle, Soul Plane, Jimminy Glick in La La Wood,

Harold and Kumar Go To White Castle, Undercover Brother, and more)

There will also be an auction between acts.

PLEASE tell all your friends and family!

There is only seating for 90 people, so hurry and reserve your

tickets with Laughing Matters (www.laughingmatters.com)!!

All proceeds go to help pay for Maggi's surgeries and medical costs.

For further details, please email

ddblair@blairprod.com or pmblair@blairprod.com

(More information to come!)

Prayer Request

2005-12-07T11:51:00.000-05:00

Please remember these special people in your prayers:

Kathy Kinsey, recently lost her husband, Rueben
Harry Chaney, came home from NICU before Thanksgiving, pray that he continues to gain weight and stays healthy
Anthony, had cranio surgery early November, pray that he continues to improve in development and for his health

Thank you!
Maggi and Family

December 6, 2005

2005-12-07T11:34:00.000-05:00

My Family at church!

7 Months Old

2005-12-07T11:22:00.000-05:00

Can you believe I am already 7 months old? I can't! I have discovered my tongue can be used to make a gobble sound like a turkey! It is making my mom and dad laugh so hard! My brothers make me laugh out loud and are spoiling me rotten with all of their kisses. There are some cute pictures of us in the photo album. I love it when Michael and Zack are here on the weekends, they are such great brothers.

This past Sunday our church had the Christmas Concert, "Love's Pure Light". Daddy played trombone and the choir sounded so beautiful. I was very quiet during the whole performance, except for once...I coo'ed during a prayer and mommy put my pacifier in my mouth! I fell asleep after that. It was wonderful to see our church family. I saw Rachel, one of the babies in my class and she was sitting up straight, holding her head up...so, I tried to do the same as her! Mommy was so proud of me! Soon I will be able to hold my head up all of the time!

Oh, yeah! I am cutting my 2nd tooth!

I love all of you and can't wait to get more hugs and kisses from my family and everyone at church!

Maggi

Maggi's New Friend

2005-11-13T19:02:00.000-05:00

Harrison and Maggi

Harrison is the son of my friend, Christy. We were able to meet one another a couple of weeks ago near Christy's work. Christy and Harrison have not been able to meet Maggi yet, like many of you, because Maggi has been sick. Let me just say, Harrison loved her! He was so sweet and gentle with Maggi and she responded to him like she already knew him. Harrison wanted to go home with us and got in the van...oh, how funny that was! Christy gave Maggi some of Harrison's clothes, which she is wearing almost all of the time. Also, Harrison had a lot of cool toys for Maggi to bring home with her and she is playing with everything! Isn't Harrison a cutie pie!!!

If you want to see more pictures, we have a photo album with Harrison and Maggi! "Hi, Harrison and Christy!"...it was great seeing you and we really appreciate the goodies!

Donna, Patrick and Maggi

MRI & CT SCAN

2005-11-13T18:46:00.000-05:00

We were able to schedule Maggi's MRI and CT Scan on the same day at Scottish Rite, so she will only have to be sedated one time.

MRI/CT Scan Date: December 12th @ 11am

The MRI is going to be a view of the Brain w/o Contrast. This will help orthopedics determine if the brain/central nervous system is being affected by the scoliosis.

The CT Scan is for the neursurgeon and plastic surgeon to see how Maggi's skull/brain are shaping and developing since her surgery in August.

Please keep her in your prayers. We are anxious to get this done so that we may learn more about Maggi's progress and scoliosis...also, so we will know what to expect next. She has been very sick with a cold, so we had to reschedule the MRI.

Hope all is well with everyone! We just can't believe the Holidays are approaching so soon! Here is a link to Scottish Rite's website, so you can learn a little bit about scoliosis!
http://www.choa.org/default.aspx?id=1536

Much Love,
The Blairs

Pumpkins, Pumpkins, Oh My!

2005-10-29T13:41:00.000-04:00

New Pics of me in the pumpkin patch! Look at me sitting with all of these wonderful balls of orange! Check out my photobook under PUMPKIN PATCH!

6 Months Old!

2005-10-26T20:27:00.000-04:00

Hi, Everyone!

Happy Birthday to me! I am one half of one year old! Isn't that great? My mommy put me in a real thick sleeper and I really don't like it. I would love it if I could be in my birthday suit all of the time!

Well, I am starting to hold my head a little bit! A couple of times a day, for 10 to 20 seconds at a time! I can even turn my head when I am holding it up!

Look out world, Maggi is growing up and getting stronger!

I LOVE ALL OF YOU! I have more pictures added of me at 6 months and some of my head, showing how it is changing. Dr. Stevenson said that we will see a lot of changes until I am about 2 years old.

Maggi "Big Girl" Blair

Before and After

2005-10-26T18:58:00.000-04:00

This is my head! Hasn't it changed a lot? Be sure to look at my photos, there are more to see!

Health Update

2005-10-19T13:58:00.000-04:00

Maggi's Scoliosis and Seizures

On Monday, 10/17/05, we took Maggi to Scottish Rite to see the Orthopedic Specialist about her Scoliosis.

X-rays were done and this is what was found:
Maggi has a curvature in the Thoraxic Region of 39%

An MRI is scheduled for 11/15/05 to make sure that the brain stem is not being affected and that the central nervous system is fine. He is very positive, as are we.

We also saw the neurologist that is calling Maggi's seizures on 10/8/05, "spells" and that to watch her. At this point, no cause for alarm because she is behaving super and her examination was wonderful. Sometimes with Reflux, it can cause seizures or a child look like they are having seizures. We will follow up with Gastrointestinal next Friday.

Keep her in your prayers and always, let us know if you need anything...we know somebody who has a deep, strong, sweet connection with God... and she will pass on anything you need in her little prayers!

Much Love,
Donna

Halloween Baby!

2005-10-19T13:54:00.000-04:00

Happy Halloween!

Can you believe I am already 6 months old? Aren't I adorable in my ghost jammies? My mom dresses me up all of the time. She is silly.

Be sure to stay posted, I am going to have more pictures online by Friday. They will be my 6 month pictures, mom and dad haven't taken any of me yet. We want to find some pumpkins to pose me with! Wow, they are so much fun.

I LOVE ALL OF YOU!
Maggi

Maggi Bows

2005-10-04T21:37:00.000-04:00

Maggi Bows!

While Maggi is sleeping, I make hair bows to relieve stress! So, I have about 90 of them and will be selling them at a Fall Bazaar this weekend! Please come! I will have some of my cd's there to give out to everyone, with a donation given to Maggi.

MCDONOUGH UNITED METHODIST CHURCH
FALL BAZAAR

151 MACON STREET, MCDONOUGH, GA 30253

9am - 4pm

770.957.4150

Mom will have lots of her homemade preserves, too! Even some pickled ocra, chow-chow and honey! So, please come visit. There are a lot of wonderful games for kids, too!

We hope to see you there, we'd love to see everyone...and YES, MAGGI WILL BE THERE!

How am I doing now???

2005-10-04T21:15:00.000-04:00

Happy October to all of you!

We wanted to update you on Maggi's progress. She said it was okay for us to say a few things. We took Maggi to a follow up visit to the neurologist, last week. We weren't too thrilled and are looking to get a second opinion. The follow up was for the visit Maggi had at Scottish Rite, when she was admitted on June 14th, due to not breathing. That was the scariest event of Maggi's health, thus far. We learned later, after speaking with a few of the specialists that treated her there that week, that Maggi was in a great deal of trouble. We now know how lucky we are that she is still with us...has had her surgery and is progressing as well as she is.

There was the incident of the morning that she quit breathing three times within one hour and couldn't wake up. It appears that she more than likely had a seizure. This is what we are currently searching for a neurologist to have examined. It is terrifying, but believe me, I know my little Maggi and I could tell she was in trouble that morning and even after that, I have had a couple of occassions where she appeard to be having a seizure. So, we must get that checked out and only by the best!

Our other concern is Maggi's scoliosis. She was diagnosed in May, along with her craniosynostos...at the time we were so emotional over the cranio issue, that I didn't even comprehend her scoliosis. So, it has taken us until this past month to realize that she had the curve in her spine and brought it up to her pediatrician. Dr. Goza (pediatrician), suggested that we see an orthopedic specialist, which we will be doing this month. Her scoliosis is in the thoraxic region and can be the most difficult to treat. So, we also have learned that scoliosis can contribute to her not breathing...which makes a lot of sense to us!

Maggi is throwing up with her reflux much more, as of late. We are still treating her with Prevacid and have added Mylanta for the burning pain she gets. It really has helped. But, we will be contacing Dr. Lewis' office tomorrow to see if we need a visit with him.

GREAT NEWS about Maggi! She is blossoming developmentally and it is such a joy to see her reaching for toys, our faces and for our hands to hold. I can't tell you what a big difference that is. There is so much personality in this little girl, just waiting to burst out! We want to thank everyone for their prayers. Please continue to ask God to watch over us, we hope that we can start attending church on a regular basis, again. I miss singing in the choir so much and being in our Sunday School Class with Greg Shaw. Our music minister is so uplifting, Mr. Mark Karki, he is always sending out the most amazing emails. So, we want to move on from reading these great emails, to actually attending the church and being a part of our family there.

Much Love to All of You...remember that there are children out there in much more need than our little Maggi and we feel so blessed that her health can be addressed and treated. It is difficult for any parent, no matter what level of severity their child's health is...most of us aren't doctors or nurses and we have to trust these professionals with our children and sometimes we don't get the best of care. Hopefully other parents are half as lucky as we have been...we have been blessed with some great specialists thus far and if anyone comes into Maggi's path that isn't on top their game, well...they are out. We trust our gut instinct and our hearts...we trust God more than anything. So, continue to pray for us and for those other sick children that may be living on their last shred of hope. We ache so much for what their parents must be going through. We have seen so much having been at Scottish Rite.

God Bless Each of You and All of Love Goes Out to You and Your Families!

Donna & Patrick

My Occupational Therapist

2005-10-04T21:08:00.000-04:00

This is Miss Monique! She is my occupational therapist and has started back her visits with me, every other Tuesday! She was so impressed with my new look and how well I am doing with communicating! Mommy and daddy were able to get some great tips on helping me gain more strength in my neck when I am looking towards my left.

When I was born, my head was stuck to the right and I couldn't really turn it to the left, at all. I still favor my right side, but now, since surgery, I can actually hear a sound to my left and turn towards it! Because I have been lying more on my right side, my head is getting flat. After surgery, my head was so round and within a week, it started flattening. With just adding the cool tips Miss Monique gave us, it will all shapen out soon!

Do you know what is really neat about Miss Monique? She is a dancer, just like mommy used to be and she has invited mommy to take her adult tap class! Wow, that is great. I hope that mommy takes the time to go. I know she gets busy, but it would do her some good!

We love Miss Monique and all of the ladies of "Babies Can't Wait"...they are a great support to us.

Tons of LOVE,
MAGGI

5 Months Old!

2005-09-19T21:11:00.000-04:00

Hi, Friends & Family!

Yesterday I turned 5 Months Old! Isn't that great? The older I get, the better I feel and only if I could cut these teeth in...I think mom would like some sleep! Did you know that Jay Leno comes on at 11:30pm and a Leno re-run comes on at 3am??? Just ask mom, she knows all of the late night shows. Conan is her favorite.

Look at my HaPpY FaCe! Mom and Dad put all of the stuffed animals around me (that were given to me by friends and family) and placed me on my favorite pillow from Miss Rainy! The crocheted shawl is also in the picture...the sweet women of Fairburn United Methodist Church made it for me. How special are all of the gifts in this picture! See how happy I am?

Tomorrow we have an appointment with Dr. Goza for my four month shots. Also, I will have my check-up! I am sure I will impress Dr. Goza with how much I have grown. I hope daddy doesn't aggrivate Miss Wendy again! He always makes her laugh when we visit.

We have been super busy lately. Daddy has been working really hard at promoting his business and mommy has been going to Miss Rainy's to do a little bit of work, here and there. We didn't make it to church this weekend because I wasn't feeling too well. Guess you can say I am a night person. So, maybe one day I can learn to sleep on a schedule, I am sure it will help my parents out a lot. They are working so hard to start their own business from home so they can take care of me. Things are starting to picking up. Wish them luck!

I love all of you so much!
Maggi

No More Staples!

2005-09-07T20:17:00.000-04:00

Guess what? I had my staples removed on Friday, 9/2/05! Dr. Stevenson was really impressed with how great my incision looked. He said that I can go swimming now! Who is he kidding? My one piece has been ready to go for a while now! I can't wait to get into my Mimi's hot tub and relax, this surgery was harder than I made it look!

Thank you for all of your prayers, not only did I heal well, but I look gorgeous! Please add some of the church family to your prayers for me. All of these nice people have been so good to my family. There has been injury, illnesses, death in the family, a new baby, and a house fire. Also, we are all praying for the victims of the hurricane...we know how lucky we are. God takes care of His children and I know that He works miracles!

So, let's all keep praying really hard!

Lawrence & Ann Jacobs

Roy & Barbara Hand

Kelly (new mom) & Brock (new baby)

Arthur Cox

Rueben Kinsey

Family of Steve Wallis

Margaret & Ernie Saunders

I LOVE ALL OF YOU!

Looking Better!

2005-09-01T00:11:00.000-04:00

Don't I look happier? The surgery has helped me feel so much better, I think I hear and see everything more clearly than I used to! You know how I know??? I keep wiggling, smiling, kicking, and not sleeping! Yep! I am keeping mommy and daddy up until 2am, most nights...I was missing out on life before, so I have a lot of catching up to do.

I am feeling better, but gave my mom a real scare this morning. My heart monitor went off three times and she had to get me to catch my breath by shaking me...it terrified her because I was really cold and in a deep, deep sleep...I just wouldn't wake up! But, finally, she put me in the bed with her and wrapped me up in the covers to warm me up! So, I decided to wake up and play, eat, and take my medicine.

Just when we all think the hardest part is over, I guess we realized I still have some challenges to face...so, continue praying for me. My mom and dad are always giving their testimony about the power of prayer to everyone they see...even COMPLETE STRANGERS!

I love all of you and can't wait for you to see my new pictures on Miss Rainy's website, they are of me and my new look!!! In one of the pictures, I am smiling so big and throwing my arms up...boy, I look CUTE!

Just use the same password and website: www.imagesbyrainy.com
Click onto: CLIENTS
Click onto: Donna Blair 8/30/05
Password: blair

DO YOU SEE ME? WHAT A MAJOR DIFFERENCE IN HOW I LOOK? MY EYE LOOKS SO MUCH BETTER! We took the portraits yesterday. I love Miss Rainy, she sure is good with kids like me...she is gentle.

MUCH LOVE TO ALL OF YOU!
Maggi

Friends!

2005-08-29T20:28:00.000-04:00

Look at me! I am out of the house only 9 days after surgery and my mommy had some long time friends come over to see me! We also went to church that morning, where mommy gave her testimony of the POWER OF PRAYER! Miss Lana and Miss Julie have been praying for me. They have been such good friends with my mom. Miss Lana and Miss Julie both were roommates with my mom back in the day. It is great that they still keep in touch.

You can see more pictures of my Sunday visit under "photos"! I love getting my picture taken. Tomorrow, we have an appointment to see Miss Rainy at her photography studio...she has updated her website with a special feature all about me! Wow, I feel like a little celebrity! Miss Rainy sure does love me...I think I have had about 1,000 prayers per staple in my head...and that is A LOT!

Images by Rainy: www.imagesbyrainy.com
Click on: Special Kids

Gotta love going to see Dr. Lewis...

2005-08-26T14:17:00.000-04:00

Dr. Lewis is my gastrointestinal doctor... wow... that's a lot to say in one breath!

This is the guy who took me OFF my Reglan and prescribed Prevacid... now that I'm off my Reglan, I'm a happy, wiggly, talkative, ALERT baby!!! Mommy and Daddy says if it weren't for Dr. Lewis, I would still be kind of "comatose"... that means all I would be doing is laying around sleeping all the time (like I did when I first got out of NICU).

Dr. Lewis is a really nice guy, and my mommy and daddy like him a whole lot.... and my Mimi REALLY likes him... a whole whole whole lot... she says he's a cutie! You can probably tell by this picture that I think so, too... I'm just staring and talking to him... and maybe flirting a little, too... ;-)

This is the staff at Dr. Lewis' office in Fayetteville. They're all really sweet women who have been praying for me ever since they first met me. They're all really nice women, and my mommy and daddy like them, too. My daddy likes to pick on them, though, cause every time we go there, he takes all their pens and pencils and lays them all over the desk. My mommy tells them that she didn't realize when she got married that my daddy would turn into a kid. :-D

Home again, home again...

2005-08-22T08:42:00.000-04:00

Well, the doctors let me come home yesterday… they were all so great to me… the doctors, the nurses, and the techs / nursing assistants. Mommy and daddy were a little nervous about bringing me home, but nurse Kimi told them that I would be “faaaaahne” (“fine”, with a REAL southern accent).

Mimi’s going to be helping my mommy and daddy the next few days to take care of me while mommy and daddy try to get back into the swing of things with work.

I’m talking up a storm!! …and I’m eating better now that I’m home from the hospital. I think I’m more at ease here at home, so I feel more comfortable eating.

I go to get my staples out in about 2 weeks. Please continue to pray for me and my family. We’re over the big part, but we still have a ways to go!!

Out of PICU!!

2005-08-19T16:56:00.000-04:00

Hey everyone! This is a picture of Dr. Burstein (the plastic surgeon) with my mommy and me.

They took me out of Pediatric Intensive Care Unit today around noon and put me in my own room!! I guess that means I'm doing better, huh? :-) Dr. Burstein says that my head is closed up with staples and stitches underneath that. Mommy and daddy don't want to put any pictures of me online right now because I am so swollen. I'm not feeling very well because I hurt so much, but that will get better.

God's taking good care of me and my mommy and daddy. ...and my mommy and daddy are taking good care of me... and each other... we're all working together to get me better and ready to go home. The doctor says that I may even be ready to go home tomorrow... but mommy says SHE'S not ready yet... :-) Any way it goes, we'll all be alright... thanks to you and your prayers... and God's healing touch.

More later!!

I'm already looking lots better!!

2005-08-18T19:33:00.000-04:00

What do you think? Am I a 10, or what??

I can't wait to go home and start feeling better!! I miss my brothers and everyone else, too! I want to get better so that I can have my friends Madelyn and Sarah over for a tea-party... and I want to watch movies with my big brothers and love on them because I miss them so much!

My mommy and daddy say that they love everyone very much for all that they have done for me. You are all very very very sweet people, they tell me. I'm sure you all are, too, 'cause my mom and dad don't hang out with just anybody! :-)

Boy, am I glad that I can eat again!! I had to stop eating last night at midnight, and I could only have clear liquids (Pedialyte) until 4:30 this morning. Then... nothing... UGH!! I thought I would STARVE!! But now I can have my bottles again!! YAY ME!!

I love you all... mommy and daddy says to keep praying for me till I get home and get better... I want you to pray for my mommy and daddy, too... they have done so much in the past few months... they need a LOT of sleep!!

Thank you Dr. Stevenson and Dr. Burstein!!!

2005-08-18T19:26:00.000-04:00

(Dr. Kevin Stevenson and his assistant at my bedside)

My mommy and daddy would like to thank Dr. Kevin Stevenson, Dr. Fernando Burstein and everyone else who was in the operating room that helped me through my surgery. They said, "It was a boring surgery!" That means that nothing bad happened and everything went just as they wanted it to... that's a GOOD thing!

Mimi and Pop were with me in ICU after they got me in there and stable. I'm doing well. Sleeping fairly peacefully (thanks to some good pain medicine)... eating (bottles) like a champ...

I'll be swelling over the next few days, but I will get to go home when I can open my eyes again (they'll be swollen shut, too).

Next update: Close-up pics of me!!

I'm back!!

2005-08-18T13:45:00.000-04:00

Well, it's 1:45 pm now. I've been in recovery for the past hour or so. Everything went GREAT!! The doctors had to give me a little bit of blood, but they said that's normal with just about any operation.

Do you like my helmet? It's made out of foam and gauze and tape! I like it. It helps my head to be more comfy. The doctors say that it will probably come off in a couple of days.

They're about to take me to my Pediatric Intensive Care Unit (PICU) room now, so I'll have to tell you more later!!!

Waiting with Baited Breath

2005-08-18T12:30:00.000-04:00

There was a waiting room full of people waiting to see how I did. Besides my mommy and daddy, there was my Mimi, Pop, Aunt Regina and Cousin Tina, Rick and Sandy and Cuz Brian. They were all really nervous waiting for me to come back from surgery.

The Doctors took me back at 8:30 am and actually got started with the surgery around 9:45 am. They had to get me all ready by putting in IVs, sedating me (daddy says that means putting me to sleep, but I was already snoozing), and getting the breathing tube inside my throat. They called at about 10am and said that they were starting the actual operation. This picture was taken at 12:19 pm. They were still working on me, but they were getting ready to wrap things up!!

More to come!!

Madelyn

2005-08-17T23:02:00.000-04:00

This is Madelyn, she is the little girl on my prayer list! She is so sweet and had surgery for craniosynostosis, too! Madelyn had the same neurosurgeon, Dr. Stevenson. Madelyn's mom, Shana, has been so good to my mommy, they email all of the time!

See how beautiful Madelyn is? I think she is so pretty and how wonderful it is to know that her surgery went so well! Makes me feel so good.

Please keep Madelyn and her family in your prayers, my parents don't know what they would do without them right now.

Much Love to Madelyn and her Family...and to everyone who reads my site!

Maggi

Thank You to our Church Family!

2005-08-16T23:02:00.000-04:00

We are so blessed to have a Church Family as

Giving as our's at McDonough Road Baptist Church!

Maggi's Dedication

2005-08-16T22:47:00.000-04:00

A Baby is a Miracle,

A Gift From Up Above,

A Wonder Fresh From Heaven's Hands,

God's Messenger of Love.

Our little girl was Dedicated this past Sunday, Praise God for His gift to us! We can not thank Dr. Chancey, our minister (with us in the picture above) enough for his guidance. Dr. Chancey is more than a minister to the church, he is a father himself and understands what Patrick and I are going through. Dr. Chancey has been so available to us whenever we have needed him. We couldn't have asked for a better service this past Sunday, as Dr. Chancey spoke of fearing God, it confirmed that this is exactly why Patrick and I are getting through this difficult time.

We trust and rely on God. Through the entire challenges of Maggi's health, prayer has always gotten us through. How else does a parent get through watching their child suffer? There is a purpose for our daughter, Maggi. There is a reason she was chosen as one of God's special babies, one of the sick. Maggi is going to be a representation of God's strength, while honoring Him and His glory as she learns how He helped us get through these trials.

Can you imagine becoming of the age where you can understand, speak, and communicate with others...and only to learn that when you were an infant that you had been given a second chance, that you had gone through a serious surgery and overcame many illnesses? It will be an amazing revalation to Maggi, I just know it, as she hears our stories of her beginnings and of all the people that prayed for her, that loved her.

We can't thank our church family enough. The Celebration Choir made a donation to the building fund in honor of Maggi. Individuals have blessed us with cards filled with incredible words of support and monitary gifts.

Patrick and I hope that each of you know how much we appreciate your help, how much we needed it, and how far it will go.

We are blessed. Much Love to each of you, please be looking for your Thank You CARDS!

If there is anything Patrick or I could ever do for any of you, please let us know. We are good listeners and have a lot of compassion in our hearts.

Much Love - Patrick, Donna, Maggi, Zack & Michael

My New Stuffed Animal

2005-08-11T23:31:00.000-04:00

Mommy & Daddy got this lamb that says a nite-nite prayer when his tummy is sqeezed. They bought it for me to take to the hospital!

My Family's Gift of Love

2005-08-10T22:37:00.000-04:00

My family recently got together for the annual Family Reunion. Everyone pulled together and gave me a Love Basket. There were so many beautiful cards and donations toward my fund. We were so happy and thankful to each of them that gave so graciously.

Next time I see all of my family, I am going to be a new little girl...I won't look the same and I will be healthier! It is going to be so nice to let everyone kiss me and hug me.

God always answers prayers. He always provides when you need it. My whole family really helped us in a time of need, we were so thrilled. Here is a poem mommy found that says a little bit about how it made them feel...

My Family Are My Caregivers

Our family is the greatest, this I know is true;

You've helped me with my illness, there's nothing you won't do.

No matter when I need you, you've always been right there;

Through thick and thin, good and bad,

your love you freely share.

On the days when I am down, Feeling blue and wearing a frown,

Someone always makes me feel better

With a smile, a hug, or a very sweet letter.

Thanks to you, I never feel alone,

And as a person I know I've grown.

We've come a long way and I want you to know;

I treasure the way that your love always shows.

Miss Rainy

2005-08-10T22:24:00.000-04:00

Miss Rainy Took My Beautiful Portraits!

Wow! Miss Rainy is the most talented lady - and SO SWEET! She was great with me while taking my portraits and my mommy let her hold me for a long time (that says a lot about Miss Rainy!).

Please visit her website and look at my new portraits. Miss Rainy, Miss Kim, and Miss Melissa worked very hard with me for two hours to help me take a beautiful portrait before my surgery.

www.imagesbyrainy.com

Just click on the "clients" icon...find my name, "Maggi Images"...there is a password, type in "blair".

Aren't I beautiful? Miss Rainy did all of this amazing work from the bottom of her heart. She has made my parents so happy by giving them these portraits as a gift. We are so blessed. She says that I am an angel.

Miss Rainy is in our prayers. Please pray for her, Miss Kim and Miss Melissa. They all have families and are giving Christians.

As you can imagine, my mom and dad cried like babies...Hey! They cried like I do when I am hungry!

We Love You Miss Rainy! Thank you so much!

Hugs and Kisses,

Maggi

Maggi's Dedication

2005-08-02T22:36:00.000-04:00

Sunday, August 14th, 2005

10:55am

McDonough Road Baptist Church

352 McDonough Road, Fayetteville, GA, 30214

www.mcdonoughroad.org

Please come to Sunday morning service for Maggi's dedication.

Our church family will be praying for her surgery on the 18th and would love to have

you there to wish Maggi well. Our church has been so wonderful to us

through this difficult time.

Members have brought homecooked meals to us.

We are constantly receiving emails of love and support.

We are called from someone in our church every week to check on us.

We are truly blessed.

Maggi's Prayer Requests

2005-07-23T23:53:00.000-04:00

Nonnie

We ask that you keep Nonnie in your prayers. Nonnie is always giving me and my brothers neat little gifts. Nonnie's grown up name is Robertine Mitchely. She had surgery today and we pray for a swift recovery. We love her very much! Hey Mitchely Family!

Maggi, Camille, Cindy

While we were at Scottish Rite today, for pre-op, mommy met a sweet lady, Camille. Camille is the grandmother of a little girl named, Maggi! Isn't that neat? We have the same name and were both named after wonderful women in our families. Cindy is Maggi's mom. Maggi had surgery on her tonsils. We pray that Maggi heals well and that the family gets through this difficult time. Camille was very sweet to me and my mom.

It is great how we are meeting so many other families

through all of this at Scottish.

They are all so caring and understanding through

this difficult time. They also are worried like us.

God Bless All of the Children of the World!

MADELYN
Wow! We have met a wonderful family that has really made mommy feel better tonight. Thank you to Miss Shana and her story about her daughter, Madelyn. Madelyn had surgery with the same neurosurgeon that will be performing mine, Dr. Stevenson. Madelyn's parents are offering us lots of support and she has two older sisters! They have even sent us pictures of their little girl, she sure is beautiful! Keep them in your prayers, they have such wonderful hearts and we are very thankful to them. 8/2/05

Please pray for my Mommy's New Friend!
Mommy has been talking to a really nice lady who has a 2 1/2 year old with craniosynestosis and some other health problems. They are giving each other support.

Say a Prayer for Gabriel!

He is 2 1/2 and has Craniosynestosis, Reflux, Kabuki Syndrome, along with other issues

He has had 5 surgeries and his Mom and Dad are taking GREAT CARE of HIM!

Thank you to Gabriel's mommy for helping my mom during this tough time. My mom said she is really blessed to have her to talk to. God puts special people in our lives everyday, so, we always have hope.

My parents attend McDONOUGH ROAD BAPTIST CHURCH and everyone has been praying for me. We will be sure to add Gabriel to the prayer list at church.

www.mcdonoughroad.org

My Surgery & Health

2005-07-23T23:18:00.000-04:00

Well, all of you know that I have had a tough time since I was born. I started out in NICU for almost three weeks and I got to go home Mother's Day Weekend! Once I was home, I had tons of doctor's appointments. These are the kind of specialists I have seen since then:

Nephrologist - for my hypertension
Plastic Surgeon - for my surgery in August
Neurosurgeon - for my surgery in August
Geneticist - to test me for syndromes...which are all negative
Gastrointestinal - for my acid reflux
Occupational & Speech Therapist - for my feeding problems
Nutritionist - for my feeding problems and weight gain
Cardiologist - to make sure my hypertension was not affecting my heart
Neurologist - to make sure my brain was functioning properly

Mom and Dad are usually driving me around two to four times a week for these appointments! We are lucky to have Dr. Lewis with Scottish Rite practicing at the new hospital in Fayetteville! It only took 15 minutes to get there for my appointment on Friday and he said I was doing GREAT! Hopefully my reflux will go away by age 9 months.

Now that I am three months old, I am growing and gaining weight. The specialists are doing surgery at four months of age because my blood platelet level will be ideal for surgery and the skull will be easier to work with then. But, as I grow, my skull is putting pressure on my brain and sometimes it causes me to have more drainage and I choke. Mom and Dad keep me suctioned and clear all of the time. They take my temperature everyday to make sure I am alright. When I had to go to the pediatrician this week, Mom & Dad thought I had an ear infection because I was pulling at my right ear. But boy, I fooled them...I had just discovered my ears and was playing! So, it was really good news.

Please know how much I love my Mommy, Daddy, and my Family! They are smothering me with kisses and spending a lot of time talking to me so that I can progress more in my development.

GIGGLED!
YES! I GIGGLED for the first time on 7/22/05! I laughed again for mommy today, also! I am feeling better because I have so much love and someone around to always take care of me and give me my medicine (and kisses and kisses and kisses).

PREVACID
Right now I am only taking Prevacid. I used to be on four different medications and had to be on a really tough schedule of meds. It was hard on all of us and I was always sleepy. Now, I am alert and can interact with everyone. (thank you Dr. Lewis!)

HEART MONITOR
When I got home from Scottish Rite on June 17th, the nephrologist had a Heart Monitor sent to my home so that it would help my Mommy and Daddy know when I stopped breathing for more than 20 seconds. Luckily, I have only gone into APNEA four times and my heart rate has only shown as being SLOW, once! Usually I wear this IF my parents take me somewhere in the van and I ALWAYS wear it at night so it can alert them when they are sleeping. The only thing I DO NOT LIKE about it, is that it rubs me red on my skin! But, Mommy puts some A&D ointment on me to ease the redness.

LINK::
Children's Hospital of Atlanta/Scottish Rite
www.choa.org

Three Months Old

2005-07-18T19:46:00.000-04:00

Whoo Hoo! Three months old on 7/18/05!

My weight is all the way up to 10 lbs. 10 oz.

My mommy dressed me up to take some cute pictures of me to put into my scrapbook, and there is one of me in my birthday suit!

I love all of you, thank you for your prayers!

Great weekend with my brothers!!

2005-07-18T09:50:00.000-04:00

My brothers love me so much!! ...and I love them, too!!! They are so sweet to me... They were here for a visit this past weekend, and they loved on me every time they got near me... Isn't it sweet??

Also, the auctions on eBay have ended. So that you don't have to try and track down everything, I will tell you what everything sold for...

Scott Miller & Commonwealth T-Shirt (house band for Blue Collar TV)- (there were 2) 1- $6.00, 2- $6.50
Blue Collar Comedy Tour CD (autographed by Jeff, Bill and Larry)- $36.00
Blue Collar Comedy Tour DVD (authgraphed by Jeff, Bill and Larry)- $31.00
Larry the Cable Guy talking doll (autographed)- $41.02
Bill Engvall talking doll (autographed)- (there were 2) 1- $6.25, 2- $15.55
Jeff Foxworthy talking doll (autographed)- $53.73
Larry the Cable Guy talking clip-on (autographed)- $39.07
Bill Engvall talking clip-on (autographed)- $2.75
Jeff Foxworthy talking clip-on (autographed)- $21.87

As you can see, we raised a good bit more money for my surgery... those Blue Collar guys are so awesome for donating all that stuff to me. Thanks Jeff, Bill and Larry... and thanks Gary and Leslie for helping get them all signed... and thanks Sam for putting them all up on auction... and a special thanks to everyone who bid on the items!!!!!

New news from the Geneticist...

2005-07-15T15:32:00.000-04:00

Hey!! My geneticist called a little while ago... seems the test results from the "Syndrome Test" (the test they did to find out if what I have (Craniosynostosis) is a result of a syndrome or not)... It's negative!! They will have to do another test when I'm a year old just to be sure, but that's ok with me... cause right now I'm doing great!!!

Love,
Maggi

New news from the Nephrologist...

2005-07-15T12:45:00.000-04:00

My Nephrologist called today (she's the doctor that's been monitoring my blood pressure). As you may (or may not) know, I've been off my blood pressure medicine (Captopril) for about two weeks, now. We have a nurse (Nurse Pat) that comes to our house twice a week to check my blood pressure, weight and temperature. When the doctor called today, she said that my blood pressure has been looking so good, that we don't have to have the nurse come out anymore!! That's great... but I'm going to miss Nurse Pat. She's really sweet to me.

So it looks like I'm doing better and better every day, huh? I can't wait to get my surgery over so that I can be done with it!!

Keep praying for me!!

Love,
Maggi

Eating solid foods...

2005-07-14T23:21:00.000-04:00

WOW!! I'm such a big girl now!! See me eating my cereal?? Mommy and daddy wanted to see if I would eat from a spoon. I did... and boy was it good! Mommy got me some banana flavored rice cereal... I can't wait to try it!!

Hey, don't forget, you can leave comments on each blog that I leave. Also, you can email me!! I love getting emails from people... especially the sweet ones where people tell me how much they love me and are praying for me and my mommy and daddy!
Talk to you all again soon!!

Love,
Maggi

Doing great!!

2005-07-14T09:31:00.000-04:00

Well, Nurse Pat just left... my blood pressure was 76/58 and I now weigh 10lbs 6.5oz!!! I'm growing like a little weed!!

Hey, I just remembered... some friends of my mom and dad have put an auction on eBay for me. Jeff Foxworthy, Bill Engvall and Larry the Cable Guy signed some stuff to be auctioned off for me and it's going well!! You should check out the auction!!! eBay Auctions

I've been "talking"... well, COOing a lot lately... my mom and dad say it's me talking... lol I'm just such a happy baby!!

One month and four days until my surgery... keep me in your prayers, won't you?

Love,
Maggi

Welcome!

2005-07-13T12:59:00.000-04:00

Hello!! Thank you for visiting my website and blog!! I've got some cool photos, too...

I'll be leaving messages every week (maybe 4 or 5 a week) so keep my site in your favorites!! Check it regularly... and SAY HELLO every now and again!!

You can leave comments on each blog entry, so feel free to do that. I love communicating with people... especially my mommy and daddy!!

Come back often!!

Love,
Maggi