Can't get enough of Dad

When Ayzie gets tired you know because the thumb goes in the mouth and the other hand on her ear.  Lately she has evolved to thumb in mouth and hand on Daddy’s ear.  We all know how much Adi adores her Dad and would choose him over anyone to do anything for her.... which I am grateful for because when Dad’s around only Dad can change her diaper. :)  Ayzie on the other hand always prefers me, until lately.  We went in yesterday to have both girls checked out by the pediatrician.    Apparently Ayzie has an ear infection.  She’s been sick off and on for a month now and she’s been having a hard time sleeping because of congestion for most of that time.  At night when when she wakes up she yells “Daddy, Daddy.”  Last night she screamed out for him about 10 times.  I feel bad for poor Dad.... I know he wishes he could be the one with her but because of flights and school he has to sleep.

For your viewing pleasure I have added a picture of Adi with all her excitement that Daddy dressed and yes, even did her pig tails today.  Thanks Daddy!!!!

Another little bit of information-  We have gone 3 days without any accidents.  Ayzie has been saying "potty" or going to the potty by herself.  What a little champ.  

Latest on Adi- 

We have been approved to go to the Children’s Hospital in Birmingham AL for two specialities.  We are hoping the other 4 specialists get approved soon.  We found out this hospital does have a sleep lab for peds which I hope is where we will be getting most of our most important questions answered... one question being why can’t my child get into deep REM sleep?  The pediatrician talked about having Adi admitted for at least 3 days to make it easier on getting studies, blood work, tests, etc done.  I smiled.  At this point I understand it is so much easier to get things ordered and done when your child is hospitalized.  I already called Megan to see if she would come along for the ride and she will, which will be the biggest blessing especially with Ayzie.  I also have an Aunt and Uncle who live up there who I will contact soon.  This is exciting and I am so grateful this will hopefully be happening sooner than later. 

EEG results

Adi, Adi, Adi

So we finally had our appointment to find out results on the 19 hour EEG.  It seems her little brain is spiking.  According to the study 1400 times that day and especially when she is just entering REM sleep.  Now you may think just put her on the dang seizure med and forget about it but unfortunately it is always more complicated than that.  Scott and I have been struggling to get this little girl to gain weight her whole life.  This medication along with the growth hormone have her little body burning hundreds of calories in just their consumption.  The med also changes her personality. Then there is having to push more enteral feeds which causes her to sleep less, especially during the night.  With her stomach surgeries we are also fighting possibilities of bowel obstruction. I’ve asked myself-- What’s more important the malnutrition issue or the spikes that could eventually lead to grand mal seizures?  After researching seizures and seizure meds I had tons of questions like, if seizures can be caused from stress on the body or malnutrition why isn't anyone willing to dig deeper to find out why she isn't sleeping?  Why is blood work showing that on a 1200 calorie diet my daughter is still malnourished? I also found recommendations online to put kids on a casein/ gluten free diet, so of course I asked the doc and he said sure try it but it won’t reverse anything.  Then I asked about studies I’d found on seizure meds causing problems with calcium absorption, he just grinned and said that’s only after 25 years of use.  I then tried making him aware of  Adi’s failure to thrive and re-emphasized my concern with calcium because of her scoliosis and it was like I was talking to a wall.  I left frustrated, hoping to someday meet a doctor who cares enough to take all of Adi into consideration.    


FYI- We are in the process of getting into the Children's Hospital in Birmingham.  Cross your fingers we find a great sleep specialist and get some real answers.

On to happier subjects.  I have decided to cut back on therapy Thursdays.  Monday was doctor apt day, Tues/Thurs therapy at pearl nelson, and Wed/Fri Miss Wanda from the school district.  Thursdays we also have a speech therapist come to our home from the school district which I have decided to keep.  I will be making up the missed PT with lots of fun.

We bought Adi her own little bike, which she loves, and have a playground right behind the house which they love going to.  There are also our walks to the seawall where they get to walk and see all the animals (dogs, birds, fish, etc).  I have also ventured to babysit two really fun little friends (at different times of course) which has been a blessing for both us and their moms.  I figure by having one friend over they get the benefits of interacting with others as well as limited exposure to germs.  I hate having to worry about germs but unfortunately it is still a big issue.  

Ayzie- She continues to test her limits on just about everything.  We went to the beach Saturday and the kid just dove right in with no regard to the cold water or having an adult with her (don't worry Superman Dad got to her before anything could happen).  She loves watching and running after the squirrels.  Luckily we have quite a few just outside the back door every morning.    

Enjoying 70 degree weather in Feb

quick update on the family 

Adi- This sweet little girl continues to teach us lessons on strength and perseverance.  We met with Dr. Stanton, an orthopedic surgeon, for a routine three month visit on the 16th and received news that Adi’s scoliosis  has worsened 5 degrees.  He would have started bracing but with the shape of her sternum and g-tube it would just be to hard.   The next day I took her into her pediatrition, Dr. Willert and found that the screaming she had been doing for almost two weeks was due to a partial bowl obstruction.  The docs suggestion was 1/2 tsp milk of magnesium twice/daily, which is hard to give her because she complains it hurts anytime we use her tube.  Then there are the seizures which continue.  I don’t know if it is connected to diet or if I just need to give in and start her on an anti-seizure med.  

We were supposed to have her apt to get the results of her 24 hr EEG Wed. but after being stuck on Tues for 45 minutes at the front gate with armed men not letting anyone on or off base (which I later found out was just a drill and would prob be happening at random times all week), decided not to chance it and rescheduled for March 7th.  

Adi has been loving sunbeams at church.  Her teacher and Primary President have commented on how well she has done participating.  She has been loving “i sceem” or ice cream and loves the friendship of Ayzie, Ellah, Lindsay and Cameron.  We had a chance to babysit Ellah and Cameron on Friday and the girls were in heaven.  The kids were so much fun to watch playing together.  We have sure been lucky to have made such good friends here.

Ayzie-  She has entered her terrible twos.  She knows what no means and uses it a lot.  She loves dried blue berries, wheat thins, bean dip and has just been a great little eater.  She has been sick with little colds and has had a rough go with her sleep but we are crossing our fingers it is short lived.  The kid is a relentless mover in bed and just doesn’t allow anyone else to sleep around her.  She loves making people laugh and if you find her in the right mood she will give you a hundred kisses.  

Scott- Has been having to report to the hanger at 5:30 every morning for the last week which has been hard.  It looks like school will be even more time consuming from here on out.  He has done very well so far and we recognize how blessed we have been.  

Me-  The moments the girls are laughing, cuddling, or giving kisses I find myself wishing they don’t grow up to fast.  I have made some amazing friends here in FL and I can’t imagine what life would be like without them.  I have also loved my calling in the YWs.  

There are always little eyes watching

Passed out on the rug watching Little Einstein's 

Caroline is only 5 weeks old. What a cutie!

First time on this type of swing and loved it

Sunday afternoon walk. 68 degrees outside

Carpet Painting with nail polish - Sat Feb 5

The girls stopped making noise.... I ran upstairs to see what was going on. The girls were both covered with nail polish.  Adi had tried to paint Ayzie's nails and I guess when it got on the carpet they decided to paint.  We will be paying to replace the carpet in Ayzie's room and the hall.
Adi still looks like a blue monster.

Anyone know how to get nail polish off sensitive  skin?

Soccer kicks

Playing Catch Up

SInce it has been so long I have decided to just make a list of what has happened since July.

July-   Ayzlyn turned 1

17th Flew out with Doug and Val to Montgomery, AL

20th Scott graduated from OTS

20th Flew to Provo

25th Scott went to Pensacola to find us a home and report 

  27th Adi had her first sleep study

Aug -  9th Packed up our two storage units onto a truck

11 th Adi had a g-tube placed at Primary Children’s

16th Our truck of stuff got to Scott

18th Grandma Val flew out with the girls and I 

19- 21 Unpacked and organized our home

22nd - Mom flew home, we went to Montgomery for ASBC

Sep - Many drives from Mont. to Pensacola to meet with doctors

We celebrated Adi’s 3rd birthday in Montgomery with lots of ice cream

21st Adi had obstructive bowel surgery in Pensacola

21 thru Oct 14th Granny and Grandpa Nelson come help out

Oct-    1st Scott graduates from ASBC and drives home

8th Adi’s second sleep study  

29th Celebrate Halloween at Scott’s office, drive to Baton Rouge for our first Temple trip while in Pensacola

Nov- 1st - 20th Scott goes to Pueblo, CO for IFS

2nd We start therapy at the Pearl Nelson Center for PT, OT, ST

9th Adi has her first cavity filled

24th - 28th Go to Sea Grove beach to be with Marshall Blackham’s, Greg Fish’s, Rowley’s, Jake Fish’s and Kevin.     

Dec- 7th - 9th Scott has water survival training

10th Miss Wanda’s first visit (Home school teacher through school district), Adi falls in tub and splits chin needing 9   
  stiches, Ayzie tastes simple green 
 11th- Ayzie ran to her Dad who just pulled up to the house and forgot to step down. Her poor nose took the brunt of the fall 

14th Adi’s EEG at Gulf Breeze Neurology Center 

17th Adi’s 3rd Sleep study at the Baptist Hospital

18th - 29th Provo for Christmas

Jan- 5th Scott starts his 11 month training

19th Found out there are red flags on EEG showing multi focal spikes

20th Met with Endo, Pulmonology, and GI.  IGF levels show Adi isn’t getting enough nutrition. Last sleep study shows Adi needs sleep apnea machine.  

22nd First time Adi sits on her little potty and goes pee by herself. 

25th  Adi rides a tricycle by herself.  Never seen the kid so happy.  She also goes in the potty number 2.  Wow I 

        know - but when you are told that kids like Adi normally are harder to potty train because of their ability to hold 

        it and get UTIs. It makes us grateful she’s become interested in potty training on her own.

 Look for the pink shirt with buttons that I have to wash almost everyday because Adi loves it so much. Ayzie can’t sleep without her silk blankets which she loves to drag around and get dirty. Ayzie is attached to her baby dolls and loves taking turns with Adi riding the pink baby stroller.  Adi learned how to open/close doors in October and since then at random you will hear yelling from a scared Ayzie locked in a dark closet or room.  Ayzie and Adi have learned how to be true sisters, one minute they are hitting or biting each other the next they are hugging and kissing.  I have had a hard time disciplining-- when one of them is placed in time out the other wants to go comfort the other which just leads to laughing.  Ayzie has been sick since Friday with a very nasty flu and has been very grumpy.  Today she has said  “no” either crying or screaming at me to everything.  

Adi on the other hand has been getting upset when Mom and Dad are close to each other.  Adi woke up from her nap and dad went in to hang out with her.    When I went in to join the party Adi got upset I was too close to her Dad.  Scott tried to explain it was ok for mommy and daddy to be together, she didn’t like the talk and said “Mom, mom” and signaled for me to take her.  Scott tried talking to her but she wouldn’t look at him or go to him until he said, “Adi come here I want to say sorry to you.”  She instantly went to him. 

Where do kids come from and who makes them so funny?

I also added a picture of why my daughter is so skinny-- if only we all loved veggies so much. =)