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!