My Boys...........

Appts already......

..........wow, talk about fast!!! Brady has an eye exam scheduled for Monday morning at 9:20......with a doctor that happens to be THE pediatric opthomologist for Alabama!!! YEA.....thanks to be God for blessings!!!

They will examine Brady mainly looking for nodules in the iris (a clear sign/symptom of NF) which has no effect on Brady's sight. And to look for a tumor on the optic nerve....a lot of cases of NF develop a tumor on this nerve.........so we will have to monitor this to watch for such a tumor.

He has his MRI and mutation test scheduled for November 3....this is the first they had available...we will go to Children's Hospital to have this completed as Brady will be sedated. Good news is, he is scheduled for 8:00 that morning.........as he has to go without food and drink before!!!!

Brady's Big Day..

....we had Brady's doctor's appointment with the Genetics Clinic at UAB yesterday. He did well....they weighed him, measured him, measured his head, checked his reflexes, undressed him, felt of his skin and bones, had him interact with the doctor, run down the hall, etc........although they would not confirm NF, the doctor stated she felt as though he does have it. The good news is she said she saw nothing at this time that caused her alarm!!! No bone deformities, no mental deficiencies, she really thinks his speech delay is a "boy" thing as many males have delay in their expressive side and she didn't think his jumping, running (gross motor skills) is more than an overcautious child. He will be scheduled for a MRI, eye exam, and gene mutation test.........which will confirm the NF diagnosis. We are to keep an eye on things...if he ever has a symptom that seems to be lingering, such as a cough that lasts for weeks, we are to bring him in. He goes back in 4 months to meet with the Genetics Clinic again.

But both Tony and I felt as though this first appointment was a positive.

Feed me....

.................ummm, oh how I love sweet potatoes...........and peas........and carrots........and apples.........and squash........and pears...............and bananas..........in fact, so far, I've loved anything food!!!!

Cooper...

.........had his four month checkup last Monday, he weighed in at 15 lb 5 oz (75%) and he was 26" long (90%)..............so he is still growing well!!! He had four shots and handled it pretty well.....so we are good until the six month checkup!

And he is eating his veggies and fruits well too!!! Thank goodness for easy babies.

Ready, set, SMILE...

...........the boys had their first dentist appointment this week and I missed it! With work, I was not able to make this one...but their Dad was the trooper, or should I say the victim, who took them along with reinforcement from Rhonda (my cousin---who, my mother in law would appreciate the love of the camera, loves to take pics--so I HAD to ask her to go so I would have the event documented!

My Brady was a trooper, like usual, and sat in the chair, opened his mouth, had his teeth "brushed" and flouride applied!!! In return he received a new toothbrush and toothpaste....and get this, not ONE sticker like I remember as a child, BUT A WHOLE LEGAL SIZE SHEET OF STICKERS!!!!!!!!!!!!!!!!! WOW!

And true to his nature, Hayden, lets just say, it was an unsuccessful field trip to the dentists office!!! But the little joker still got stickers!!!!!!!!!!!!!!!

The plan....

...............Tony met with Julie and the case worker yesterday. He actually got to read the eval writeup.........which was good!!! Brady on cognitive is at a 30 month level, which is exactly where he needs to be. And his fine motor skills are fine.

He lacks in the speech/language skills and in gross motor skills. This is where there is a delay.

They wrote a great plan to explain where Tony and I would like to see Brady at the end of this training. They will come to the house for sessions and even work with Mom and Kimberly, as they watch the boys daily, so that everyone is on the same page.

Tony was very impressed with everthing....................and we thank God, Brady has the ability to do this!!!!

Speech Evaluation...

...........yesterday Brady had an appointment for speech evaluation. This was scheduled before the word NF ever entered our lives......once again, amazing how God has everything planned out before we even know it! Tony and I have been concerned about Brady speech, or there lack of, and with his twin being SO talkative, we were not sure if he had a delay or if we were just comparing him too much to Hayden.

My thought as a mother was, this eval could go one of two ways, Brady get in there and say everything they ask and Tony & I look like stupid parents...........or he would go in there and say NOTHING, just do his adorable grin he does!!!

He did GREAT....so much better than I anticipated....we walked in together, Julie met us at the door and asked Brady if he wanted to go play, and he took off without me---YEAH!!!!! Back in the "playroom", the case worker, the speech therapist, her assistant and Julie, all worked with Brady having him do different things (play things to keep it fun)....and asked me a SERIES of questions........................after completing it all, they did state that they would write up the evaluation and meet with Tony on Thursday to review the plan.

The speech therapist did confirm he has a speech delay, and a couple of items of other delay, one being his size (which we already knew that), and the last being his "clumsiness"----lack of coordination. Overall, this would put him at the 18-20 month range. As for his ability, she stated he obviously has the mental capability to think and KNOW things....he just can't relay them thru speech...and this is completely "fixable" for lack of a better word. This is GREAT news..........we just need to work with him and catch him up.......he can certainly do the work and has the ability to do it!!!!!!!!!

Dad daycare.......

...............Tony has the boys for 3 days this week all by himself, when I got home last night, he politely told me, he was now off the clock.........the boys were mine!!!! Hmmmmm, wonder what kind of day he had????!!!!

Results...

...............I received the call yesterday from the dermatologist, the biopsy was positive for Juvenile Xanthogranuloma.............does NOT show whether or not for sure that he has NF, I misunderstood that as I thought the biopsy was to confirm the NF. The geneticist will confirm the NF.........the dermatologist told me he felt sure that he would have NF. But his main reason for having the biopsy done, is that kids with JXGs (these spots go away over time--no other effects from these spots)----and NF have a slightly higher chance of developing leukemia.......he didn't want to tell me that earlier as he was giving me so much other news..................he said the it increases the chances by about 20%, HOWEVER, the strand of leukemia is a RARE form.......so the chances of Brady getting it, are slim but he wants everyone on the same page in order for all the drs to keep an eye out for any symptoms.

We have to take it one day at a time!!!!

Reassurance...

...............I received a phone call yesterday that gives me peace!!! A gentleman with the Children's Tumor Foundation, which I referenced in a previous post, called the office as he had read my blog and wanted to assure my family what GREAT care we will receive at UAB and that Dr. Bruce Korf, the geneticist at UAB, wrote the book on NF (neurofibromatosis) and basically, is the doctor to see....seriously, go google him, he DID write the book on it, and the first line you will read on the google results, he is "nationally recognized leader in human genetics and internationally regarded as a leading authority in the neurodevelopmental disorder neurofibromatosis"....................WOW.........he is even leading clinical trials at UAB for NF....................talk about God putting us in the right place!!!!! If we are going to fight this battle, at least God has armed us with a great commander to lead the way......................HOPE!!!!!!!!!!!!!!

You've got mail.....

...........we received the letter in the mail on Saturday from UAB Genetics advising that Brady has an appointment with the Genetics Clinic on August 27 at 9:30.........should take about two hours and should just be discussion of Brady and medical history. We also have to take pics of his brothers with us. We'll see what they say................my prayer was that, we could get in quickly, so glad to know we are already scheduled.

Marion...

......well Ma T (that my Mom) took Cooper and I to Marion with her last night as we are helping give a baby shower for friend of mine from my hometown of Marion. It's amazing how something such as this is a "vacation" for this mommy!!! As the twins are staying behind at home with their Dad for a little R&R time.....now let me correct you on this, this does not mean Rest and Relaxation, this means Railroad & Railway....as my boys have hit the age for obsession with Thomas the Train. The only problem is, I think their Dad, my wonderful husband, has become MORE obsessed than they.....as everytime the mood strikes (aka every other day) he comes home with more train stuff!!! And HE is the one that gets upset when the tracks are broken!!!! Gotta love them...all FOUR of my boys!!!!

Dear God....

...........thank you for surrounding me with loving friends, family, co-workers that are also believers...............their prayers and words inspire me....................thank you for helping me keep my faith..............sincerely, your child Stephanie

Bad afternoon...

.......my husband told me not to look up any pictures or the video clips for Neurofibromatosis. That was like dangling a carrot in front of a rabbit.....he knows I don't like surprises. I'm now in my office trying to stop crying......as I can't do this at home...........I can't let Tony know how that I am worried. God help me be strong for my family.

The day after......

.........I am now ending my facebook blogging days and will be just using this blog which I will be setting to private. I will be using my blog not as a way to alert people of everything happening in our lives, but as a way to journal my thoughts in order to keep a happy face and my sanity.

The day after....this is the day after my world stopped turning...momentarily. As a mother of three healthy, beautiful boys, I have daily thanked God for them being healthy. That bubble I was living in, suddenly popped.

My husband has been telling me over and over that we need to take Brady to a dermatologist for his eczema, not just to the pediatrician. I have thought he was over reacting as we get the same response from everyone on the eczema, treat it with ointment and he will eventually outgrow it. Thursday night I was awakened during the night with a thought, that we must take him to the dermatologist...enough was enough, something more needed to be done.

Now I have to back myself up and remember that we used a pediatrician at Bham Pediatrics for the first two years of the twins lives.............for the time period that they go to the doctor the most, as from 2 forward they only go once a year. At the two year checkup, I switched doctors because I was pregnant with our third child and wanted a doctor that was closer to our home. Dr Sester stated at the boys appointment, that she noticed the spots (which I thought were birthmarks) on Brady needed to be watched to see if the multiplied or grew in size...that she was sure the other pediatrician had mentioned a genetic disease to us....to which I responded NO he never mentioned such a thing. She explained that drs will only see the children once a year from now on and that we parents are the best monitors for such things. No other thought was given to this.

Kimberly took Brady to the dermatologist yesterday morning at 9:50 with a list of questions I had regarding the eczema and the "spots". At 10:39, I got a call from Kimberly that the doctor wanted to talk to me. At this point, I am expecting an explanation of what the spots were and what treatment should be given. At this point, the doctor starts explaining to me his concern that Brady could have Neurofibromatosis. As the spots are called cafe' au lait spots and that he noticed a few other spots on his leg, known as JXG which is also a sympton of Neurofibromatosis. He wanted to do a biopsy of the JXG to send off to obtain confirmation of Neurofibromatosis. My mind raced, what did he just say, what does this mean, what about my baby Brady????? I immediately asked him to wait about 15 minutes in order to allow me to get there to the office before doing the biopsy...to which he agreed. I then fell apart.

I don't think I driven so fast and wreckless since before I was pregnant....with the twins....I kept thinking hold it together, it can't be that bad, you have to be the strong one............how can something be wrong with one of our kids? Why us? Then no, you can do this, God has never left you and He will not send you anything you cannot handle................He has gotten you so far and never given me more than I can handle. Remember, you are stronger than this...................just go in and find out what MUST be done. All I could think of, was Angie Smith, remember "Our God is the same God today, as He was yesterday".

After holding my son, while the dr injected numbing fluid and continuing to hold him perfectly still in order to do the biopsy, we discussed the issue at hand. Brady has more than 6 cafe au lait spots.....this is a symptom of Neurofibromatosis. He has a couple of JXGs, which are another symptom of Neurofibromatosis. Brady's language delay, can be a direct result of this. The biopsy will give us an answer and guide us to the next step. The next step will be to see a geneticist, the only one in the state of Alabama that deals with this disease. The blessing is, he is located here in Birmingham at UAB. Great---he's here local and we can have access to him easily if there is an emergency. Problem---with him being the only one, it is hard to get in to see him. So the dermatologist and pediatrician will make referrals once the biopsy is in... and we will wait. So, what exactly is Neurofibromatosis and what does this mean to Brady's life?

I know dr's hate hearing a mother ask, okay give it to me, what's the best case and the worst case we are talking about here.....being in the insurance biz, this could really open them up to a lawsuit. So with hesitation the dr explains, Neurofibromatosis is a genetic disease, but because Tony and I neither one have ANY symptoms, this appears to be spontaneous. (Which I have discovered happens 30-50% of the time!) Which is good, so that Cooper and Hayden should not have it. Neurofibromatosis is a chromosomal mutation that causes tumors to grow throughout the body, inside and out. Every case is a little different as some people have no symptoms and others have all symptoms. It can affect the bones, nerves, eyesight, hearing, causes learning disabilities, chronic pain, and can lead to cancer. We do not know what lies in store............we do feel that Brady has it, as another symptom is a larger head, and they tend to have a small frame. So far, Brady fits 3 of the symptoms. I don't know what to expect or what lies ahead.......................just taking it one day at a time and research as much as I can..................I have found a great website, www.ctf.org, Children's Tumor Foundation.

I just pray for now, that when we get the results, we can get into the geneticist as quickly as possible.

Professional Pics

Professional Pics

Professional Pics

Professional Pics...

Father's Day...

..............the men in my life!!!!!!!!!!!!!!!!!!!!!!!!!!! Although poor Cooper's head looks like it is going to fall off, it was the best we could do..........Happy Father's Day to the love of my life...........what an adventure! I could not imagine God sending anyone else crazy enough to travel this road with me............but look what great treasures we have picked up along the way!!!! I love you, and an proud that you are the father of my boys!!!!!!!!!!!!!!!!!

Popsicles make the world okay....

................my boys have not found my love for ice cream, and my mother can vouch for that, aka ice cream disaster with the boys! However, after a stressful day and the boys were a little fussy...I discovered all is right with the world when you give them a homemade pudding popsicle!!!! Enjoy.........they did............

2 months old...

.......this is a little behind on time, but had to post pics of Cooper on his 2 Month Birthday!!!! Which would have been June 1...........

Cooper...

................here is Cooper making his debute in the Bumbo.......of course at this early stage he was very shakey in the seat, but we just had to try it!

Cooper's two month checkup...

Cooper had his two month checkup yesterday..................and he just keeps growing!! He is 24 1/2" and weighs 13 lbs 5 1/2 oz................he's in the upper percentiles.............so different from his brothers, who still remain in the lower percentiles!!!

He is such a good baby....................thank goodness because his brothers make up for it!!!!

Life is very busy....exciting............but even though I stay exhausted, I love every minute of it. Never would I have dreamed that I would love being a mother this much....................never did I EVER dream that when I began this journey four years ago with Tony, that this is where the path would take me. I have three very beautiful, very different, little boys who can drive me crazy, make me laugh, and make me cry.....................I love them dearly and thank them for making me their mother, for making me a better person.

Pics...

............while on maternity leave, we had pics of the boys taken......here is the one shot I have right now, that I can post.

MIA..........

.......okay so I've been a little busy lately!!! Time to make up for it.......Cooper Reese Craycraft was born on April 1 at 7:07 am weighing in at 9 lbs 7 ozs and 21 1/2" in length. He's beautiful!!! And a mix of Tony and I both...........................our family is blessed again. Big brothers welcomed him by wanting to hold him.

We are still on.....

......for Wednesday, April 1. I had my last dr appt on Tuesday, and blood pressure was not elevated, 112 over 64.....everything checks out perfect.....and I have not dilated any...so we are set to arrive at the hospital on Wednesday at 5:00 am!!!!!!

Book a Baby...

..........last week, when I went to the doctor, we "officially" set the due date as I am scheduled for a section.................we will be meeting Cooper Reese on April 1 at 7:00 am!!!!!! Unless, he and God decide to make it earlier...............at the time, nothing was "happening" yet and I will be going weekly now...............so we'll see if any action starts!! I'm not counting on it, as I believe from his level of activity still, that he is transverse in lieu of head down but that can all change......

Another Dr Appt.......

..........another appt yesterday, blood pressure was 100/50 and baby's heartrate was 153.............still measuring right on schedule..................next appt is in two weeks and should find out more then......................as it will be a longer appt.........then we are on the every week schedule!!!! The countdown will begin!!!!!!!!!!!!!!!!!

The men in my life, the loves of my life....

Boys 2 yr checkup...

........the boys had their 2nd year checkup last Friday morning. Things are good..........they are still underweight so we are going to keep on with the whole milk and see if we can fattten them up a little......................Brady weight 23 lbs 15 oz and Hayden weighs 23 lb and 7 oz.............other than that, they are doing well!!!!!!! And don't have to go back until age 3 and no more shots until they start school................................

Sarah Rose Craycraft....

.................Joe and Marsha and Emma welcomed their newest bundle today a little after 11:00. She went in this morning at 6:00 to be induced..................and didn't have to wait long.............she weighed 6 lbs 4 oz and was 19 in long.............................hope to see pics soon!!!!

Another Dr Appt....

...I had my 30 wk checkup this week and everything is good..............blood pressure 110/70, baby's heartrate 160, and we are just moving along............I now start going every 2 weeks............so the countdown has started....I have 9 weeks left as we are scheduled for section sometime April 1-3........................hopefully, closer to time it will be moved up a week!!! We'll see!!!!!

Adults & Christmas Eve...

...the kids are nestled all snug in their beds, while Mom & Dad assemble everything!!!!

Making the "Fat Man" fatter...

..............part of our Christmas tradition, started this year, will be to make cookies for Santa!! The boys did well..........although, to our surprise, Hayden did the best!! Our wild child has a calm creative side.................maybe he is his mother afterall!!! But he did the best job and really was quite upset when we took everything away...........Brady enjoyed it, but discovered is was more fun to dip your icing covered knife into the sprinkles..........

Working backwards....

.....because I have neglected my blog, I am having to work backwards so please forgive as these will be out of order. We went to Zoolight Safari at the Birmingham Zoo on December 19. The boys enjoyed the Carousel ride the most!!!!!!! (so did I)

Dr Appt....

I had a dr's appt last Wednesday, which included the glucose test!!! Everything went well....I passed the test no issues..............blood pressure was 120 over 64, baby's heartbeat was 160 and I measured exactly 27 wks which was where I am........so everything is great so far.

We discussed a date range, as we cannot set the exact delivery for a section until the month before..........and we are looking at April 1-3 unless I go on my own earlier.

I go back in three weeks, which makes it Jan 27..........then I will start going every 2 wks..............we'll be at the end before we know it!!!!!!!!!!!!!