Happy New Year!

It's 2230 and Natalee & I are currently partying it up at the house watching Oprah. Nice! I just got back from playing some card game called "Screw Your Neighbor". Since I learned that I figured I would learn some blogging skills. LOL

Well, Happy New Year everyone!

Regards,

Mike

Mike turns 39!

Happy birthday to you, happy birthday to you, happy birthday dear daddy....happy birthday to you! Well another year has past but Mike you don't look any worse for the wear.....we hope you enjoyed your day of golf and cake....we love you lots!

Sledding in T-town

Well the forecast called for warm weather in two days so we decided to take advantage of what snow was left....granted it had rained on and off for 2 days so the snow was more like ice...but whose to say when we would get the chance again. So we bundled everyone up....lots of layers, found some sleds to include box tops and garbage bags and went off in search of the perfect hill.

Madison didn't want to go down the hill on her first attempt but she was hooked by the time we got to the bottom even though we fell off....it was a good thing I had a strong hold on her. Zach and Mike tried out Z new sled and hit a ice bump, POP went the sled but it held out.

Kids didn't want to leave at the end of the day; we are hoping to get more snow!

Christmas in Toledo

Merry Christmas to all. The kids and I left for Toledo on Tuesday and Mike came up on Christmas Eve with the dogs. We started the day off with decorating the cake for baby Jesus, then off to mass for families. Lots of kids so our kids' noises blended in well. We spent Christmas Eve with Nat's extended family; we are up to 48 Great Great Grandchildren. A bit overwhelming for 1st timers but they handled it all well. Grandma looked well and Santa even came for a visit...

The grandparents did a great job decorating and Santa even found his way with everyone's gifts. Z is all into Bakugan games, M loved her Barney doll and A got a Wii...finally, we are with the times!

Enjoy your gifts .....we are sending out the gift of health and happiness to everyone!

Christmas Decorating

I can't believe it is December already. Tonight we finally brought all the boxes up and spread the Christmas cheer. The kids really got a kick out of "their" ornaments this year. I have bought each child a different ornament every year that has some meaning for an event in the past year, so that was fun. Ash and Zach put up the two manger scenes....Zachary kept asking when he could open up the gifts that are already under the tree...

Mike and I are now debating if we will put up lights outside....the weather is just a tad bit colder than Guam.....we miss our neighbors across the street who light up the street.....not sure if I have that in me or not.....

Greetings to all!

Madison's First Day of Preschool

Madison started preschool today.....what a big day she had....she was so excited to carry her Dora lunchbox to the car. We first took brother to his preschool...then drove across town to her school...she walked right in....found a wagon and was the first to arrive to her classroom. She made herself right at home. There are 5 other children in the class. The sing, play games, have snack and run around in the gym. We are so glad that they opened up space for her....

Another 29th Birthday for Natalee

Yes, Yes, I celebrated another 29th birthday.....We had cake the night before....yummy ice cream cake....we kept the day low key...you know driving 10/11 hours does that for you.....I don't believe we even took pictures of the event....oh, well there is always next year at my next 29th birthday party.

I did get to drive to Montgomery to see my good friend, Krista so that was great fun. She treated me to dinner at Longhorn and lots of conversation....miss u lots girl!

Another Big Game

The day is finally here for Mike's team to set the record straight....we went out the night before to buy game shirts for all of the kids.....Mike's whole family got together, rented a HD tv to watch the game....heard it was a good time had by all....and yes ALABAMA "the elephants" finally won against Auburn.....I was in Montogomery holding baby Caleb and consoling Kristen (Auburn fan).....ROLL TIDE

Thanksgiving in Alabama

Happy Turkey Day to everyone.....we are thankful that we are back in the US and able to drive to see family....although what a drive we had ahead of us.....we spent the day at Grandmommy's house eating a wonderful feast in her newly renovated kitchen....we had turkey, ham, mac n' cheese (southern dish), stuffing, green beans, and choc pie, plus, homemade apple pie.....and can't forget that sweet tea...

After the lunch we packed everyone up and head to the park to walk it off....Nora, Ash and I walked about 4 miles while Mike and Uncle Mitchell played at the park with the kids....

A wonderful day had by all!

Nancy Kaufman Center Visit

Today, Madison and I had her evaluation at the Nancy Kaufman Center in Michigan. Nana and Uncle James came with us....what a great help they were....the evaluation was informative but disappointing at the same time. Nancy doesn't believe that Madison is ready for the Kaufman method yet....she believes that her oral-motor and sensory integration issues are bigger issues to address at this time. So we are trying to go to Conn. to see a oral-motor specialist......she also stated that Madison needed to get her OU, O, E, and T down pat before any clear speech could be understood.

Good news on the preschool homefront...with a few phone calls Madison is now in the EI preschool four times a week...so that will hopefully start next week....yeah, more peer interaction and daily therapists.....

Keep those prayers and good thoughts coming!

OSU vs MI -- the big day!!!

Madison and I watched the BIG game with family and friends....I broke down the night before and had to buy her a OSU cheerleading outfit....she was a cute cheerleader....with all of the folks in the house she was the hit of the night...kept giving high 5's.....what a great game to end the season with......GO BUCKS

First Snowfall

We woke up to our first snowfall.....everyone was excited including the dogs! Kids couldn't wait to get outside and play in the 1" of snow!!!! Coming out of the gym and putting Maddie in her car seat, I turn around to look for Zachary and for a brief moment I thought I lost him. But it turns out he was "licking" the bumper....I say "yuck" Zach that is dirty....he said Mommy it is white it's not dirty....so I tell him to stick out his tongue and try to catch the flakes instead....oh, to see the world through the eye of a 4 year old....Happy winter to all.

Thank the Lord!

We just recieved word that Madison DOES NOT have Alpers disease.....thank you to all of you who prayed for her......we are now back to not knowing why she is still delayed...So this is what we do know she has global delays, apraxia and delayed mylin but maybe all those issues will clear up in time with the appropriate help!

Madison Update

Hi everyone -- good news....so far these are the test results that have come back.....

blood sugars -- good
liver -- good
febrile seizure plus -- NEGATIVE -- which is good
sleep deprived EEG -- good...lots of twitching activity but NORMAL....apparently due to Madison low tone...and the fact that she works so hard daily her muscles will twitch more than normal
MRI -- good....and CONFIRMED that she does have delayed mylination....so 3rd opinion is a charm....waiting on the other mitchocondria blood work to return....to include the ALPERs test....
We are both hoping that that too will come back normal/negative....we truly believe the seizures just threw her little body into a tizzy...and with the proper early intervention...to include more speech...she will develop on that "normal" route...
We also just got a phone call (2 days ago) that she does qualify for the Kauffman method...so I am driving to MI next week for that evaluation...a bit of money out of our pocket...but if it helps Madison to speak then it is all worth it!
A BIG THANK YOU TO EVERYONE WHO CONTINUES TO PRAY FOR MADISON!

Halloween Fun

The night was warm for the end of October -- layers all around. I lit the pumpkins, got the candy out and dressed up the munchkins. Zachary was our spiderman (for the 2nd year in a row), Madison was the cutest lady bug around and Ash was a football player (got ready at a friend's house, didn't get pictures). We promptly left the house at 6pm and went to about 20 houses before the cold set in. By the time Daddy got home the kids were freezin' and ready to eat their candy. So Mike took Madison to four more houses and we called it a night!

October 21 -- Madison Update with Neurology

Hi everyone -- our neurology appoint with the head of Cincinnati Children's hospital was moved up from January to yesterday. We were there close to 4 hours. We like the Dr's bedside manner and he was well informed. He doesn't believe that Madison has the febrile seizure PLUS syndrome (but we will have a blood test done). So we are now going to do an sleep deprived EEG, have an MRI with dye (more more advanced technology) conducted, lots of bloodwork done (they took 7 vials from her yesterday -- she was a trooper)....and thinking about putting her on Depakote (eplipsey medication)....if we do that then she will have to be on it for 2 years.....he told us that this medication would prevent her from having febrile seizures....first doc to tell us that....he also mentioned that she may have a mitocondria disease call Alpers (see below)....at the time we thought ok, well it must be better than the PLUS seizures....and you only get so much time with the doctor so we continued down our list of questions. Lastly, he talked about putting her on a ketogenic diet or a modifed Atkins diet....looked into that too and that is so severe....

Then last night when I sat down to research what we talked about I was hit hard with the reality of what Alpers is.....needless to say Mike and I are a bit shell shocked....he is trying really hard to keep me positive.....so once again any prayers you offer up (because I can't right now....I am so angry and sad)....would be great! I will continue to keep u updated.....

Literature/Information
Alpers’ Syndrome is a disease of the brain and liver. There are 3 classical symptoms of Alpers’ Syndrome. These are: 1) seizures that are very difficult to treat and have a focal component, 2) episodic psychomotor regression or dementia (loss of developmental milestones, often associated with common childhood infections), 3) liver disease. The children are born and develop normally for a period of time in virtually every case. Symptoms begin between the first few weeks of life and about 25 years of age. Two-thirds of the cases begin to show symptoms of seizures, or episodic loss of developmental milestones, within the first 2 years of life. The liver disease is often subclinical in the early stages of disease, but can appear at any time as acute liver failure.
Alpers’ Syndrome is a recessive genetic disease with a frequency of about 1:250,000 (it is acutally 1:40,000) live births. Many cases die before an accurate diagnosis is made, so the true frequency is still an estimate.

September Update

Where does the time fly...just wanted to let you all know that we are settling into Dayton....I have painted 5 rooms and have 4 to go! Mike has put down hard wood flooring in the dining room and we have tiled two bathrooms...didn't realize that being a home owner was sooooo much work! But it has been fun to come home and realize that's ours...now will it be ours in 3 years...well that is to be determined.

We have also gone on a Thomas the train ride and went to a PBS Raggs concert....

Ashley is making friends at her school....and trying hard to keep up with six subjects....she went from a block schedule to having all six classes a day...a big transition. She is also playing volleyball for the YMCA....and is having her first game this Sat.....attached a pic of her playing.

Zachary has started preschool and loves it....he is no longer befriending any "little" person wherever we go....so I am happy to see him have some friends....he will be so ready for kindergarten....his class went on a field trip today -- Mike was able to go with him and took some pictures....

Madison turned 2.5 today.....just comparing her baby pictures with the ones I took today...it is amazing how fast they grow....she has therapy 4x a week...plus, the things we do at home with her....she is making great progress again, walking up and down the stairs...and running....I have to get that on video tape. Her speech is still very difficult to understand....highly frustrating for her but we implemented a communication device so that is helping her to get her needs meet easier...there are definitely less temper tantrums....had a 2 hour genetics appointment today....Dr didn't see much need to pursue more blood work...but when I educated him on the febrile seizure PLUS category --http://en.wikipedia.org/wiki/Generalized_epilepsy_with_febrile_seizures_plus he then did 10 minutes of research in his office and decided that Madison exhibited possibly a few of the traits of the disorder but that he need to determine if the labs in the area were skilled enough at looking for this gene....and the expense of the test....I really think we need to pursue the test if only to rule another thing out.....this has been a year of FRUSTRATION.....but I am trying to take it day by day and not get to ahead of myself. Lastly, the neurologist here stated that his pediatric radiologist do not believe that Maddie has any delay in mylination....according to the TWO MRIs taking in Hawaii....so that is hard to swallow....we are doing a 3rd MRI at the end of October and will be getting a 3rd neurologist opinion down at Cincinnati Children's Hospital with the top doc in charge...so hopefully, that sheds some light too!

Mike and I did our first 10K together....we had a lot of fun and realize that when there isn't a end goal in mind the training slacks...so we are talking about doing a 1/2 marathon together....Mike is working in the protocol office...and just got a promotion! He is happy about that....I on the other hand continue to run all 3 children to therapies, school and the gym....keep getting notices about starting up school but can't make myself go there yet....talking about getting a part-time/seasonal job....we will see about that....I have also found two different apraxic> http://www.apraxia-kids.org/ groups in the local area so that has been nice....I am also going to attend a apraxia conference in Grand Rapids in a couple of weeks so I am hoping to get more educated....lastly, due to the lack of references out there on this subject; I feel like it is what autism was 10 years ago....I have started to write some children's books....so any of you out there who have any knowledge on the subject and would like to offer some insight, I would appreciate it!

August Posting

Hi All -- Where do I start this one at???

Madison had her 5th seizure on Monday morning...bright and early at 2:47am....thankfully, we are STILL on base...so the ambulance was to our house within two minutes of the phone call and were aware of us being on the base so that was nice to have EMTs who were prepped....I gave her the seizure medication at home and the first tremor was stopped within 5 minutes....with a fever of 102ish....got loaded on the ambulance and the 2nd and 3rd tremor started (with a temperature of 105)....at which the EMTs were able to administer nasal anti-seizure med via the nose (new meds to me)....so we got to Dayton Children's Hospital....and were eventually admitted for the day....Madison has not been feeling well lately so I have taken her to the ER once and had 2 doctors appointments....all of which have resulted in she has a viral infection....just keep and eye on her.....fevers and all.....but no seizures activity until now....so frustrating we had gone 8 months without one.....we actually had a neurology appt on Monday too!

SO -- the neurologists on the floor was your classic case of no bedside manner and basically told us that she is not having the "simple" febrile seizures but complex ones, which means that he believes that there is a REASON for the seizures -- he also stated that the 3 separate seizures I thought she had that morning where ONE incident lasting 20 minutes or so...so she was sent for another EEG...this time awake and which again resulted in normal results....trying holding onto a 2 year in a mummy contraption with 30 something sticky buttons stuck on her head and wrapped like a toothache....some kinda fun, let me tell you....

Now he has to determine if Madison's previous testing, and blood work are enough....then we will see him in 3 weeks to talk over what he thinks needs to happen next....he alluded to putting her on epileptic medication....which at this point makes me very scared too do...at the same time Madison is obviously suffering from something...she has had a fever now (on and off) for over 3 weeks...and three days ago developed these blisters all over her tongue and throat....cries when she tries to eat...so frustrating....a nurse at the hospital suggested we take her to an infectious disease control doctor....so we are going to look into that....

Prior to this seizure Madison was making so much progress too...riding a tricycle, walking up stairs, and taking off her pants.....she also said Waa, Waa for water and pig the night before....it has taken her

GOOD NEWS -- we closed on our house on Thursday....signed our lives away....we move in next Weds after the carpets get cleaned.....lots of space to live....but also a long "to-do" list too! Finally, got Zachary enrolled in a pre-school....he can't wait to start school....Ash is turning 13 in a few days....a teenager to contend with!!!!

Lastly, Mike and I signed up to participate in the 10K portion of USAF marathon race in Sept......I was also able to get my dad to try his hand in the 5K.....

Ok....enough rambling for now but wanted to let everyone know how we were doing....

June Posting

We made to Ohio -- trip was uneventful for the most part....although Zach's new birthday present was left behind on plane ($70 computer thingy) and we packed both DVD players on the leg from Hawaii to Houston to Columbus -- Madison screamed (or what people thought was screaming...her Mama, mama for 3 whole hours...before I knocked her out with benadryl and motrin) ..dogs were fine....a bit stinky but in good health...Harley definitely had the case of the nerves for about two days but she is fine now!

So we got in last Friday night and have been on the go ever since. Since Sat we have seen over 30 houses...we are down to our final two...we each like the other one best...so it is a bit of a stalemate....I think I should win because I spend the most time in the kitchen! Mike doesn't agree -- tomorrow but we are looking at the final two houses tomorrow....ugh...dragging kids around hasn't been fun....

We meet with the developmentally specialist and pediatrician on Tuesday for Madison...it was an exhausting appt (reliving her short history and wondering about the could have's should haves)...about 1.5 hours but we came out with lots of referrals....liked the Drs...but they didn't say to much...wants to wait and get other infor first....understandable but at the same time was hoping he would say apraxia so I know what is in store....this is sooooo incredible hard....anyways....

We are staying on base in the temporary housing; lodging calls them cottages mike calls them shacks......(by the railroad tracks....no sleep)......Madison will start therapy next week for speech at least at Therapy connections (I think that is the name) but not the OT/PT...gotta go elsewhere for that...and as soon as we get a house then we can start the state program....

ps -- funny story...when we pulled up in front of the lodging....Zach had just woken up and was not a happy camper....got him calmed down and he said to me...mama...those trees are funny looking (pointing to a maple tree)...I said "honey, we no longer have palm trees...u will get to see lots of different looking trees now"...

April Posting

The month of April was extremely busy. Let me start with the big news we got the word that WEARE MOVING BACK TO THE US..... We are excited to get closer to top-notch medical facilities and closer to family. We should be back in the states in the next 45 days if not sooner. ....so now the packing begins and the decision of where to live ensues to.

The month of April started off with a bit of rest and relaxation for Natalee in Bali. I joined a couple of friends from here in Guam and we headed to another tropical island. When we arrived (after a difficult landing -- piolt missed the runway the 1st attempt)...we landed to a good rain storm. After finding out hotel and having a tropical drink we got some muched needed rest. We spent our trip relaxing at the spas, white water rafting, camel riding and sight seeing/buying gifts for the kiddos.

Madison had her 2 year pictures taken....so cute but lots of work...I left sweating...not sure how the photographer does that for a living. Thank goodness for technology, because I don't think she was able to capture too many "smiles."

Ashley had spring break...and enjoyed numerous sleep overs with her pal,Megan. We visited Underwater world and did some bowling. Unfortunately, there isn't a whole lot of new things to see and do on the island...once you have lived here for 2 years. Uncle Phillip came for a visit, all the way from Alabama. We took around the sights on the island and then he and Mike left for a guys getaway to Palau. Their trip to Palau was fantastic. They were able to spot sharks, sting rays and loads of fish. They did 3 dives a day andwere pretty tired by the end of the trip. The kids had a great timewith Uncle Phillip...he went to the pool with Zach and accompanied Maddie to tumbling time.

Zachary learned how to whistle this month. We were driving somewhere and kept hearing this noise and couldn't figure out where it was coming from. I said to Zach hey, Zach do you hear that squeal noise, I hope the car isn't breaking down. He said, this noise mommy? And there you have it...the boy can now whistle...lots of fun to see him master the skill. He is also a whiz on his tricycle when he wants to be....

We were also able to get a trip into Hong Kong this month as well. Seeing Uncle Tony and Aunt Nisha and baby Milan was great fun. We packed alot of sight seeing into the 4 day trip. We visited the "big budda", Disneyland (Maddie went crazy over the sight of Mickey Mouse andthroughly enjoyed the parade), local "wet" market (fish/fruit),shopping, eating Krispy Creme and relaxing with Milan. We had a wonderful time, unfortunately, Ash didn't come with...she decided she didn't want to miss a week of school and a band concert (our studious daughter)!

Lastly, Madison and I went back to Hawaii for her neurology follow-up.She had her 2nd MRI done. The results were that her brain mylin hasprogressed from 6 mns ago but isn't complete. The docs thing that it isin the final stages of completion and hope it will be done within another 6mns-1year....(normally by the age of 2 it is completed)....so that leaves the question of did the lack of mylin cause the seizures orvice versus...and unfortunately, that is a question that we will never have an answer for....the docs do believe that Maddie has a language disorder not a delay so that was a bit of a bummer...called Apraxia...basically, her brain is not wired correctly to tell her mouth,throat, lips etc. to move at the same time to form words...so this will take intensive therapy to hopefully, correct...and get Madison to be understood by the general population..thus, our return to the states. So that is our April in a nut shell.

March Posting

Hi family and friends -- wow, where did March go? We had a verybusy month.
I completed 2 -- 5K running races, hiked to Mt Lam Lam (tallest peak in Guam), rode a 20K bike race, hosted a bookclub meeting(we read The Other Bollyen Girl), learned how to make lumpia and playedBunko with the girls.
Mike -- worked, worked and worked. He was also able to get in some golf with his buddies. This month we finally decided it was time to try and leave the island early; due to Madison's medical history we are trying to be closer to doctors who can help her on a consistent basis. We are now just waiting to hear where we will go next and what Mike's next job will be!
Ash -- had a girl scout sleepover down at one of the local hotels. The girls worked on badges and had a great time. She came homewith a nasty sunburn!
Zachary -- was able to get up close and personally with thelocal snakes here "The Brown Tree Snake".....we took a tour of the USDA facility where we petted the snakes and watched the terrier dog hunt them out...pic attached
Madison -- turned two this month! We had a festive "flowerblooming" party for her at the pool! It was a great time had by all!She also had a swallow test completed; a complete trooper during that test...she even amazed the radiologist. The results indicated that she has an aversion to tough foods and possible dystharia...although the local neurologist doesn't concur at this time. So we will be off to Hawaii in 1 week (21st April) for her repeat MRI....hopefully, that willbe NORMAL and we can press with speech therapy and time! This month we also took away her beloved pacifier...ugh has that been hard...she has found her way back into our bed again...but we are slowly trying to work on that! We also attended the Kite festival here on Guam...it was greatto see all of the wonderful colors in the sky....http://www.travellady.com/Issues/March07/3974TheESTofGuam.htm.
Lastly, we celebrated St Pats (made cereal necklaces) and Easter with the kids. The kids decorated eggs, colored cookies with the neighbors, participated in two easter egg hunts. Madison actually understood the concept of picking them up and putting the eggs in her basket (Ashleywas a great help this year too!). Zachary was so fast we barely got any pictures of him. Next month we will write about Nat's travels to Bali, familytrip to Hong Kong, Ash's spring break and give you the lastest and greatest info on Madison. Thank you for keeping us in your prayers!

Taking a break from all the fun in the sun. We enjoyed our President's Day at Tarza water park. We were there when it opened and almost closed it down. Here is Madison taking her afternoon nap. She fell asleep on my lap while taking a ride on the lazy river; she transitioned well to the beach chair.