Statue of Eva!

She is getting to be such a big girl!  We were casually eating our breakfast of pears, a steaming hot bowl of oatmeal and a banana.  She was clearly done with her banana since she would pick up a piece and smoothly place her hand behind the outside of the try and drop it to the floor.  I got the hint.  Then, she devoured all of the pears.  Finally we moved to the cooled down oatmeal.  I gave her three bites.  On the fourth, she gave me the head in the corner, mouth smirk, I can only see her forehead meaning - "I don't want anymore!".  So I decided to give her the spoon and the bowl of oatmeal.  First try - She took the spoon and put the wrong side in the bowl.  Very messy.  Second try - I turned the spoon around, she slowly dipped it into the bowl and got herself a scoop.  She looked surprised at her accomplishment.  She then carefully opened her mouth and took a bite.  It was cute.  I grabbed the camera, seeing her share "Statue of Eva" pose and quickly took this shot.  Again - success at mealtime.

Doctor Update #2

Eva's "cold" has now turned to the lungs.  Last night, her cough was getting deeper and stickier.  We decided to give her a breathing treatment.  When we were ready to turn it on with her on Scott's lap, she reached for the mask just knowing that this would help her.  I couldn't even imagine being her age and know more what would be medically better for me.  huh. Anyway, she took it with no problems and was given again in the morning.  I called the doctors office and explained that she has taken her cold to a bad cough and asked for the doctor to call.  I was hoping that we could jut get a prescription over the phone but of course, since we don't live in the wagon days, they asked me to come back in to see the doctor.  I was hoping it was not another disappointing lollipop visit.  We saw different doctor this time and she was placed on predisone.  He called this a light dose, only five days worth.  I will only hope that by Tuesday, all will be healthy and medicine free.  Oh, and we got the lollipops too :).  Success for all.

SSI/HHW Update #2 & Dr Visit

I called our case worker this afternoon.  My call was inquiring about our complete disappointment from being denied by .  The Children's Special Health Services are based by the child's special needs for supplementary insurance coverage and not based on household income.  She stated that my denial letter was good news.  They base their coverage by the child's special needs and not solely on income.  Eva's file was sent to the Medical Review Team (a bunch of nurses) on March 8th.  She also stated that I should be hearing something within the next two weeks.  If I do not hear anything by April 9th, I will call her back.
We also went to the doctor today.  Our regular pediatrician is off on Mondays so we had another Doctor.  He stated that Eva had a bad cold and that we should give her either Benedryl or Zytrex.  So, after we left (I was a bit disappointed with the results and Abigail did not get her routine nurse visit lollipops) we headed to the store and picked up some generic allergy medicine.  I fixed our lunch and gave her the medicaiton including the Tylenol and seizure medication.  Later tonight during dinner, I noticed while feeding her that she had those red blotches around her neck and cheek area.  I took her out of the high chair and checked her temperature.  It was 102.8. I gave her a double dose while Abigail got me the cool washcloths.  She did not like the cold, wet towel under her armpits but after 20 minutes, her fever was 102.1 and falling.  She was still clinging to my lap and I could tell that she did not want me to give her any indepenence just yet.  After another 30 minutes her stability, body temperature, and balance was improved.  Her temperature was just over 100.  Around 8:30 tonight, she seemed to be more back to normal.  Now - I am not sure what type of cold this is but I know that if we have another day like this tomorrow, we will be taking another visit to see our doctor and get some lollipops. 

IDI & SSI/HHW Update

IDI - We went to the IDI doctor on Thursday.  He stated that all results were normal, except one.  The one that was not was the immunization rating.  To explain, there are three different rates that these numbers must be at.  The one that her number count was not to par was about 150 points lower than normal.  He stated that we were to get the rest of her immunization shots when she turns two and then draw more tests.  If they do not increase in numbers, the worse possible outcome would be for her to have a blood transfusion to raise her anti-oxidant levels.  Grrrrrr.
SSI/HHW - I recieved a letter from the state on Saturday.  Eva was denied for any medical assistance.  I will be Appealing this.  The battle is far from being over.  Double Grrrrrr.

Ammoxicillian is potentially to the Rescue - Again

Well, another weekend has past and we were not so lucky.  Saturday, Eva started getting a runny nose.  Abigail was complaining of a stomach ache.  After all, two weeks is our prime for a healthy household.  So today, Abigail was feeling better while Eva's nose was a sap tree.  Our box of tissue could not keep up with her nose.  Around six, Abigail and Scott were playing cards at the kitchen table and Eva had crawled her way under the table to get some of the action.  I heard that she was getting a bit upset but I did not know if it was because she was somehow stuck under the table or just fussy in general.  I decided to get her out from under the table and the thought hit me to take her temperature just because she felt a little warm.  As I was holding her retrieving the thermometer, we made our way to the couch.  I was getting situated with her on my lap and then it happened, the helpless sound of a shout-out cry and the seizure began.  This one only lasted just over a minute but it was different.  After it ended, I noticed that there were red blotches around her face.  It was almost like someone had placed many adhesives down her cheek, ear, neck, and shoulder area and quickly pulled them off.  We took off her shirt and the ripe strawberry color redness went down her stomach area and into her groin.  We also saw that it was going down both sides of her body - almost parallel.  Scott grabbed some cool wet wash clothes and I took her temperature.  It was 102.8.  We gave her both ibuprofen and Tylenol.  After about 30 minutes, it receded to 102.0.  We were holding her for a little longer and decided to place her in her bed to relax her.  About 45 minutes later, she seemed to be getting her energy back.  She sat up in her bed and was signing "drink or eat".  Scott got her out of bed and placed her in the highchair.  She was a very hungry baby.  She ate almost a full jar of baby food, most of a banana and topped off with a sliver of ice cream cake.  She was trying hard to keep her eyes open after she finished eating but managed to watch a few episodes of Dora and Bubble Guppies.  I think if she could have her way, those two tv shows would be hour 24 hours a day along with Nemo of course.
After the chaos had ended, Scott and I both agree that this was definitely a febrile seizure.  The seizure medication has no affect on her when it comes to situations like these.
We will be going to the doctor tomorrow to make sure that there is no infection sprouting.  I am sure that ammoxicillian is in our future.

Smiles on all Faces

We are still healthy- which is always great news.  Seizure free for over 10 days and counting.  Not only is that great news but we have also received positive phone calls.


The first was from Kristina with the state.  She stated that Eva's SSI and HHW paperwork is processing.  They will be reviewed by the "team" and she will let me know if everything is approved.  What this is we are awaiting is supplemental or Special Needs Insurance.  It is required for the state to give all children with special needs their own independent coverage pertaining to their disability.  She also stated that if approved they will back-date the coverage to December 2011.  So my first thought was her "staycation" in January and it will be covered.  Then it went to - Ear tubes-covered.  IDI-covered.  Cardio-echo tests, EEG, Ultrasounds, X-Rays - all covered!  The only song that popped in my head was "R-E-L-I-E-V-E, find out what that means to me, R-E-L-I-E-V-E, all hospital visits are free..."

So now on to the second phone call - her name was Sharron from IDS or Indiana Deaf School.  She was scheduling an appointment for Eva for another hearing screening test.  After explaining to Sharron our experiences with ENT and Riley's hearing screenings, she recommended an Auditory Brainstem Response Test.  This test will measure the brain's response to sound.  They will also measure the brainwaves the ear produces when it hears sounds.  Wires again will be placed on her forehead and behind her ears.  They will also place earphones on and in the ears.  Through all of this, we are hoping that she will be sleep deprived and will fall fast asleep.  It is scheduled in the middle of April at prime nap time and will take over two hours.  She also said that the test results will be discussed after the test is completed.  We will also receive a hard copy in the mail.  If Eva does not pass any part of the test, Eva will be offered services from IDS.




The last share is about our walk today.  We went to the park - as Abigail calls it - the "big slide" park.  Eva was enjoying her cheerios and juice while I was pushing Abigail on the swing.  Then, I was helping her with the monkey bars and noticed that Eva had a huge smile on her face while she was admiring us.  I could just tell that she wanted to join in on the fun instead of her mid-morning snack.  So I took her out and stood her up against the ladder by the monkey bars while Abigail was playing "try to find me" through the windows.  As I watched Eva's concentration side-stepping around the ladder, to the right, then left, then around the other side, I was picturing it being summertime three months away.  I am hoping that she will be able to not use her three points of contact to keep balance on just two feet.  I am also hoping that she will be walking out of her stroller unassisted to join the fun.  I know those days are soon and the smiles will remain for years to come.

Grass Hater

What a wonderful week we have had so far, weather and wellness.  We have been seizure free all week!  I don't know if it could be that she is just feeling better or if the seizure medicine is helping.  I am also giving her a multi-vitamin (liquid form) to supplement her dislike of any vegetable.  On Friday, we had a visit from the nutritionist.  She will be coming monthly and I believe that keeping a meal journal will help with her growth.  We may be able to catch any possible allergies.  She said that Eva is in the 5% for weight and the 15% for height.  In real terms - 19.8 pounds, 31" long.  I see it as long as she is continuously going up in the charts, we are good.
Today we had some must needed Dad time.  He took Eva outside and put her in the grass.  Well, needless to say, I don't think she cared for it much.  Being in the cast last summer/fall took care of her taste of the outdoor green carpet.  If you watch the video, you can see that I need to work with her doing these one handed push-ups.  Her form is a bit off :)

Still cruising (with new equipment)

Eva's new and improved walker! She is really moving with this one.  

Hoping that she will be walking with out assistance soon.

Look at me!

Orthosis Update

So we got a call yesterday from the orthotics for Eva's shoe inserts. hey stated that the insurance deductable has not been met for the year.  I was so mad.  Seriously, I knew that it had to been met.  I mean just alone what we gave from our hospital visits.  So they said it was going to be just under $1000.
SO, I called the insurance company today.  I explained ((almost in tears (which is huge)) that we had already met our deductible.  She reviewed Eva's history and said that I was CORRECT!  She then ask for the phone number to the orthosis center to let them know that their will be no charge (which then I really almost teared up).  We will be hearing from them when the inserts arrive.  Sometimes a phone call is worth $1000.

Cracker Trophy

What a beautiful day it was today!  After our normal routine after school, we all went outside.  Eva was not to sure about the bright sun that made her sneeze and eyes tearing slowly but she did like watching her 2 big sisters playing kickball and Abigail driving her pink Mustang.  After we came inside about 1.5 hours later, she was watching me make dinner.  I could tell that she was getting hungry saying "mum-mum-num" over and over.  So, she took her own initiative and went to her high chair.  As I watched her, she held onto the foot step, prompted up one knee, and hoisted herself to the standing position.  Her head kept getting stuck in between the slots under the tray so I just took it off.  I could tell that there was some remnants of her previous meal in the seat area because she was on her tip-toes trying to reach some old piece of chicken nugget or possible banana.  She then looked at me and said in her baby sign "eat".   I got the camera, took a picture, and then saw that she had something successful in her mouth.  Yuck.  So, I just decided to let her "win" this triumphant battle and place her in the highchair, cleaning out the seat first, and awarding her with a Ritz cracker.  Victory on both ends.

Today's not-so-Accomplishments

This morning I called our pediatrician.  I spoke with the nurse to let her know what had happened over the weekend in detail.  She told me that because of the seizures I should contact our neurologist.  She also stated that she would send a message to our doctor and if she had any questions, she would contact me.  I then called the neurologists office and left a message with his nurse.  She called back about an hour later and I again explained our events from the weekend in detail.  She was wanting more specifics.  For example, she was asking whether Eva had a cough or runny nose, if her ears seemed to be bothering her, if her throat was sore or swollen, if she was running a fever.  After answering her questions, she then advised me that it sounded like she had more of a respiratory infection, virus, or viral infection.  She also said that even if a child has multiple EEG's, the results are only correct 40% of the time.  That means if anyone is tested having epilepsy with an EEG, less than half of the diagnosis's are correct. Wow.  Finally she said IF the symptoms continued, I should see my pediatrician.  So here we are again, back to not knowing what is really going on.
This is what we have decided that we definitely need to do - one - finding another video monitor during sleep time and two - video record the next seizure if possible when it happens.

Losing total counts

Total count over the weekend was 4, 27, & 8.  Four - number of seizures Eva had.  27 - number of concerned family & friends at her big sisters birthday party; Eight - how many lost hours of sleep.  To recap - Late into Thursday night, around 2350 Eva had a tonic clonic in her bed.  I cannot say that she had it in her sleep but we do know that she was sleeping previously.  It lasted about 3.5 minutes.  We stayed up with her for about 1.5 hours and after she came out of the recovery of the initial seizure, got a cup and a half of juice and regained her strength, she was back asleep.  We placed her back into bed around 0145.  At 0215, Scott went to check on her, she was a little warm but sleeping.  At 0245, she had another seizure.  This was the hiccup or jerking seizure.  It lasted a little over 30 minutes.  After 0330, we decided to keep her in our room for the rest of the night.  She woke up early around 0630 so we were now awake.  I called the doctor and made an appointment for 0945.  Our doctor said she was going to call the neurologist and advise him that Eva to be put on seizure medicine.  I also talked to the doctor about possible "parent watchers" during sleep hours.  She advised me about a seizure bed alarm which costs about $500 or the program 4 Paws which are dogs for disabled persons to assist their family.  Needless to say, they are both costly investments.  We left knowing that the neuro office would be calling soon.  After we got home, I talked to the assistant of the neuro and she said that she was calling in to the pharmacy  a medication called Keppra.  This is specifically preventative seizure medication mostly used for epilepsy.  This was comforting to know that this may be an answer to our problems but a bit concerning since she has been tested negative on three different occasions with epilepsy by an EEG.  So, after a while, I called CVS and picked up the medication while Eva had her Granny and speech therapist here.  On my way home, Granny called and said she was having another seizure.  When I got home - about five minutes later - she was in the recovery stage and pretty much out of it.  Our therapist was as calm as could be, holding Eva, talking to her, making us feel more comfortable of the situation.  After Eva recovered with her cup and a half of juice, she was tired and went to sleep.  She took a five+ hour nap.  Later that night after Keppra, ibuprofen, and tylenol was in her system, she had a fourth seizure at 2207.  It lasted about four minutes.  This was another tonic clonic.  It took her more time to recover from this one and her coloring was a blue hue.  Her legs and arms looked liked all of her veins and nerves were translucent.  Her heart beat was fast.  We stayed up with her until around 0200 just to make sure she was sleeping well and sound.  I made a human fence on the couch and we slept side by side.  At 0245, Abigail woke up from a five minute coughing spell and joined Scott on the other side of the couch.   At 0400, I placed Eva in her bed, put the monitor next to mine, and decided to take a three hour nap.
Elizabeth woke up early being party day and was in Eva's room talking to her since she was awake.  At 0745, I went into Eva's room.  She had a fever of 100.5 and was given medicine - Keppra and ibuprofen.  She seemed a bit irritable (a side affect of Keppra) so we let her do what ever made her happy.  ie-pull hair, play with phones, ect.  I put her down for a nap around 1030.  At 1400, we were getting her ready to leave but the coloring was like it was Friday so Scott opted to stay home and I left for the party.  He stated that after a 20 minutes power nap and 30 minutes of quality couch time, she was a different baby.  When I got back home around 1800, he was absolutely correct.  She was babbling, laughing, smiling, crawling, side-stepping, playing, everything.  She was good.  I was good.  Dad was good.  We were more comfortable with our situation.  The fever was still there but it was low grade and hopefully now more controlable.  She went to bed last night around 2100.  At 0100, I was getting concerned listening to her breathing through the monitor.  It was like she was unable to breath from her nose and only able to literally gasp for air whenever she could - like a brand new swimmer being thrown into the waves of Hawaii.  I stayed up with her for about an hour, just watching her sleep and then I went to bed.  She woke up around 1100- giving an extra hour with the time change.  She seemed  to have that bad coloring again.  I fed her some lunchfast and she seemed better with food in her belly.  Her coloring was much better and her energy was returning.  She took a long nap again but as of now, at 2300, she has not had a seizure today - knock, knock.  I am going to call our doctor to make an appointment for tomorrow to give her our weekend update.
I have so may unknown answers to questions I have not thought of yet. The ones I know I have are -  Could the seizure medication, seizures, or ? deregulating oxygen levels?  What is sleep apenea?  Can seizures occur while sleeping?  I just don't know what else.  I think I am just lost with all of this.

Seizure free…not quite yet!

Greetings all.  I would like to add an update to Peanut’s adventure.  This evening your normal publisher is out with our other daughters celebrating Elizabeth’s birthday today.  So I, a.k.a. Dad, will be moderator for this update.

Starting late Thursday evening as we settled down for bed we began to hear Peanut through the monitor.  She was beginning to breathe very heavy and making gurgling sounds.  This promptly got our attention and we immediately went in to check on her.  We observed she was having a seizure and we then placed her on the floor, used cool washcloths to cool her down, and took her temperature which was 101.5 degrees.  The seizure lasted 2 to 3 minutes.  Definitely not one of her more severe seizures, but it still got our attention.  After her seizure ended, we gave her ibuprofen and proceeded to the living room with her.  I held her as she laid there in a daze for about 20 minutes.  After that she sat up in my arms and gave us her sign for a drink.  Peanut then wanted to get down in the floor to crawl around and play with her toys.  She gave us a couple of chuckles because she wanted to stand up, but she was still disoriented and weak.  So instead she began to play peek-a-boo with us.  About 35 minutes later after she got down on the floor, we checked her body temperature again and it was about 100 degrees.  So now it is 2:00 a.m. and Mom decided to hold her on the couch as she fell asleep.  Laura then put her in her bed.  We safely made it through this seizure and went to bed ourselves.

At 2:45 a.m. Eva woke up crying and we went to check on her.  She had what we refer to as “body hiccups” when her body twitches every 15 seconds.  This lasted about 25 to 30 minutes and back to sleep she went.  A short time after that the alarm clock went off and it was time to go to work.  Peanut even got up and was very happy like nothing ever happened!  That is when Mom asked “do you think she remembers all this?”  My wonderful response to that was “I sure the hell do.”

At 9:45 a.m. Peanut had a follow-up doctor’s appointment with the family doctor reference her hospital stay last Saturday.  The Doctor stated that she did not know a cause for the seizure and that Eva looked good and healthy.  The Doctor stated that she did not have any further information because Eva did not have any symptoms of colds, etc. and for us to contact her neurologist again to see if they have any explanations.  Laura contacted him after arriving at home and the Neurologist decided to try Keppra which is for seizures.  Later that day when Laura went to pick up the prescription Granny got to experience her first seizure.  It was explained to Laura that the medicine will take two weeks to get into her system.

This completes Dad’s update.  Thanks to all family, friends, and work colleagues for their support.  This includes you too, Craig.

Fork in the Face

We added a new addition to our home therapy visitors today.  Her name is Laurie and she is an Occupational Therapist.  She is truly an amazing woman.  I usually do not mention their names but Laurie has five biological children and seven - yes seven adopted children.  Twelve total.  Reminded me of that Steve Martin movie.  Anyway, four of her adopted children have an abnormal chromosome disorder.  It is very comforting to know that even though our children do not have the same abnormality, we as parents can relate to each other's experiences.  She assured me that we could call her anytime to ask questions, consult guidance, or just vent about life in general.
Eva was very open-armed with her.  When Laurie arrived, Eva was on her knees reaching up to her.  How comforting would that be as a therapist to come into a new family and the child wants you to hold her.  I feel lucky that Eva is extremely social-able (and I am sure others appreciate it too!). After Eva and Abigail emptied her toy bag, Laurie asked if Eva could eat.  It was ironically snack time anyway so she placed Eva in the highchair and watched her eat.  After going through cheese puffs, and 3/4 of a banana - not cut up, she asked for utensils.  Uh-oh.  I hadn't started Eva with that yet.  Actually, I never even thought of it.  So I placed a raisin on the end of her fork and she ate it.  Then we repeated.  Laurie did it some more and then added chicken to the feast.  It was really cool.  My baby was eating like a big girl.  Now, don't get me wrong, she did fork herself a few times on the side of the mouth and by the end of the meal, half of her food was in her lap but it was still a good time.  I can easily see her grunting for a fork during dinner from now on.
Before she left, we scheduled weekly visits on Mondays.  Our current count - PT, OT, ST for an hour a week.  Still pushing for PT to go to twice a week.

SLEEPING....

Sleeping immediately from her lunch just after a very unpleasant visit at the ENT.  

Beating the Odds?!?

Little Peanut might be walking by her birthday!  I was going to get rid of this walker but it will definitely serve a purpose now!  YEA!  Can you tell I am a little excited :+)) A huge thanks for Eva's PT - she is making this all happen - with a little of Eva's perseverance attached of course.

With C17q, most children do not walk until after their second birthday.  We may just beat those statistics with assistance and much needed practice.  I think she would enjoy being 30 inches tall all the time. 

Some answered questions about seizures

We made it home around six tonight and I did get a few questions answered.  First, febrile seizures can occur with children up to age 5 or 6.  I asked the doctor if this is a true average  even with chromosome kids - he could not give me that answer but did refer me to Dr. Escobar, a genetics doctor associated with St. V.   I also asked the doctor (the day shift) how to prevent possible seizures.  She stated that she was very familiar with them because her daughter had them and she would treat her with ibuprofen every six hours.  So now I am advised if Eva is showing any illness symptoms, to give her ibuprofen.  I can do this.  So all in all, I feel pretty satisfied with my answers.  I know that febrile seizures are inevitable to control.  I know that they are simply out of our control, like tornadoes.  But we feel helpless as parents watching our youngest completely convulse, turning a faint shade of blue last night right in front of our eyes for over three minutes.  My gut instinct tells me that just as tornadoes are predicted by weather newscasters, so could seizures by neurologists.  I am not sure who or how I can find this person but it will be put on my never ending to-do list.

Solid 4 weeks being sick-free, until tonight

So two days ago, Peanut was struck by a sap tree of a nose.  She had that dreadful cold.  Since the rest of the girls were getting over strep throat, I figured that this cold would run its course.  Boy - it is running a marathon. Today, she started getting a light cough.  We went out to dinner with our awesome neighbors and she seemed fine.  When we got home, Scott had given her a bath and I put her down to sleep.  A little after eleven, I checked on her and I could tell that her heart beat was faster than normal and she felt warm to the touch.  I waited until twelve to get her up to see if my temperature prediction was correct.  It was 101.8.  We started to get the Tylenol and sure enough she had a full body jerk, let out some screeching wild cat cry, and then began to have a three and a half minute seizure.  That was at 0007.  We got some cold towels that quickly turned warm on her head.  After her breathing seemed back more to a normal speed and she started to fall back asleep, I gave her the Tylenol and Ibuprofen.  I also took her temperature again and it was 102.4.  At 0020, she again let out a loud cat cry and did the hiccup seizure.  I named it this because you know when you are trying to fall asleep and you are almost there when all of a sudden your whole body completely jerks?  So annoying. Well for Eva, this went on for about 25 minutes.  After about two minutes of this, we decided to visit Mr. Manning' House again.  Every minute or so, she continued to have the hiccups.   We left the house packed for at least a one night stay and arrived at 0050.  Her hiccups lasted through half of our car ride.  
Now, we are in the hospital, which is as busy as I have ever seen it.  I know that we are in for a long night because the nurse made me a fresh 16 ounce cup of ice tea.  Her fever is almost gone (it was 99.9 when the nurse took it at 0135) and we are awaiting to see the doctor.  I also know that we are on the low priority list and because they are so busy, I will be getting as comfortable as we can in these uncomfortable metal, lightly padded chairs.  Luckily for Eva, she has been so busy sleeping, she doesn't seem to mind the vibrant florescent lighting and random nurse checks.
I guess I could only say that we are truly luckier than most right now. There was a horrible tornado in Southern Indiana today and some families are still looking for their relatives. I just need have some sort of optimism in this oh-so familiar scenario.  I am not sure what will become of this.  Either just a long night or another unwanted staycation.   When the doctor comes in, my main objective will be to get the most obvious answers - At what point will these febrile seizures stop?  Is there a common age?  Is this just a symptom of C17 that will continue until who-knows-when?  Do we need to expect that every symptom of a common cold, ear infection, flu, ect. will ultimately cause a seizure? Do we just give her preventative medication all the time?  I would expect these answers to be known, however, I know that they will not be answered.  I guess our grand finale was just an assumption.

IDI

We took a visit to the IDI office.  The visit went fine.  I talked to the doctor and explained Eva's history in about five minutes.  He stated that their could possibly be something wrong with her immune system but that blood work would have to be tested to be certain.  I agreed to her getting these tests done so he sent two nurses into the room and they filled four vials of blood.  They will call me in the next few days since their computers were down.  They need to schedule another appointment in three weeks.  K.I.S.S. :)