It's taking a Village

The past two weeks have been difficult.  My inability to sleep is starting to take it tole on everyone in the house.  After talking to Dr S last week about their concerns Mommy and Daddy were told that my sleep deprivation was becoming a concern and that they needed to do what they could to help me sleep.  Well they had already been doing that, so drastic times call for drastic measures.  We were told that my lack of sleep was more likely to cause a return of seizures that my crying because I didn't want to sleep.....and so it began.  Mommy started with naps.....letting me fuss a few minutes and they coming in to tell me it's OK, etc.  Well it seemed like things started to work (nap wise, that is).  I was starting to consistently have 3 naps a day, but they drastically change in length which makes it impossible to develop any type of schedule.  That in turn made nights even more crazy because I was never waking up at consistent times.  Mommy and Daddy were trying their best to make things as normal for Aidan as they could, but the "fit hit the shan" this weekend when both Aidan and I got sick.

Aidan spent the weekend with Uncle Widg and Aunt Destin and I kept Mommy and Daddy on their toes all weekend.  So the vicious cycle begins.  I'm sick and very congested, thus not breathing well which impacts my sleep even more.  The less sleep I get the weaker I am which makes it even more difficult to go poo. Since I'm all stopped up and my tummy hurts more than usual I cut back on my nursing a good bit.

Poor Ms Kelly tried everything yesterday to help me sleep but nothing seemed to work.  So Mommy took over and she took on the task of the dreaded Kindergarten spelling test.

What's a girl to do.  I'm so tired I'm not enjoying my jumperoo anymore and just sit there unable to hold my head up due to exhaustion.

Tomorrow I follow up with my GI doc to see what else he can do to help and we are working with Dr S to see what else we can to to try and get some sleep.

Grandma is coming over this afternoon, Aunt Destin is coming over tonight to give Mommy a break and Mommy and I got a surprise call from Marmee saying she is on the way to help as well.  We are so lucky to have such wonderful family that do what they can at the drop of a hat.

TIRED

Sleep.....hummm.....not sure what I have to say about that except that it is not coming easy.  For the past week each day has been worse than the previous.  Things have gotten to the point that I'm only sleeping half of the time a baby my age should be sleeping (7-9 hours in a 24 hour period).  We have pulled out all the stops and nothing seems to be working.  We are now working with Dr. S to see what we can come up with.  It's making for a VERY tired household.  My inability to sleep is impacting every part of my life and I'm not progressing in my therapies anymore.  I'm even struggling nursing and eating solids (see the pic below - I struggle at holding my head up for dinner) and I don't jump in my bouncer. 

My sleeplessness is not the only battle we are fighting right now.  My reflux and tummy issues are reeking havoc as well.  My days are SOOOOO structured right now trying to come up with a schedule it is impossible for Mommy to leave the house.  But we left today to go to the chiropracotor, hoping that Katelin could provide some help.

Uncle Widg and Aunt Destin took Aidan to the Stock show this weekend.  I so wanted to go but it was not in the cards for me.  Aidan did share his cowboy hat with me.  I have decided that I'm gonna go next year it sounds like so much fun.

After the stock show Aidan asked if he could feed me my bedtime bottle and tell me all about his day.  I love spending time with him and he can always get a smile out of me even when I'm exhausted. 

So here's to getting on a schedule, to decent sleep, to less reflux, and pooping on my own.  Mommy, Daddy and I decided enough with all that and things are gonna start changing today......we hope.

Disregard the dark circles under my eyes.

New digs

After several weeks of sleeplessness Mommy and Daddy made an executive decision.  I moved to my own room.  Uncle Widg and Aunt Destin had decorated it for me when we found out I was being discharged from the hospital, but until now I had only slept in there in a bouncy chair when Aunt Destin was giving Mommy a nights break.

I have been sleeping in Mommy and Daddy's room/bed since I came home from the hospital.  At first it was to monitor my seizure activity and to help keep me calm, but since I have been off the sedating medications it has been a bumpy road.  Poor Daddy needs his ZZZZZZ so he can get to work.  So until the wee hours of the evening Mommy, Daddy, and Aidan (my entertainment) got to work and moved my bed.  I have really been struggling with sleep and it is getting worse everyday.  I just haven't had the chance to learn to sleep like others due to meds, medical issues, tummy problems, and a crazy schedule with so many appts/therapies.

Tuesday was the final straw.  My naps were only moments long and I was so exhausted, then I only sleeping about 7 hours total a day.  It is a work in progress and knowing me I will fight it if I can.  I'm such a happy person and so enjoy being with people that I don't want to sleep really.  My socialness is to the point that my OT doesn't really want me to have toys with faces because I spend more time smiling and laughing and talking that I forget to use my hands and arms.   There is no one I enjoy being social with more than my brother, who by the way is SOOOOO excited my room is going to be next to his.

The last few nights/days have been difficult.  Aidan and Daddy moved to the basement so they could get some sleep and Mommy and I moved upstairs.  We are still trying to find patterns in my sleep which  is all over the place, but my naps have gotten a little longer and Mommy is rearranging a lot of my appts around my sleeping.

I was up early (5 am) as usual this morning and watched Aidan as be got ready for Bronco's day at school.  He is a huge Tim Tebow fan and is ready to watch some football this weekend.  As much as we love the Broncos Mommy and I are pulling for the Saints!!!!, but don't tell Aidan.

Schedules......ha ha

Mommy and I haven't posted recently because she has been to tired at night.  So for the past 2 weeks I have decided to take charge.  Mommy thought it was about time to get me on a schedule.  With all my past medical concerns and medications it was something that just was not a priority.  With our recent change of events Mommy and Daddy decided a schedule would be best for us all.  Well I think schedules stink!!!  I spent for first 4.5 months of my life sedated to the point that I was sleeping up to 23 hours a days.  So now I want to take in all that I missed.  I must say my not sleeping is making it difficult on Mommy and Daddy.

Thank You to Priscilla's O'ma for the lovely cross that now hangs above my crib.

My Happy place. 

With all the therapies I have each week I have decided to retreat to my jump-a-roo that Santa brought me.  I would stay in here all day if I was allowed.  It's the one place I don't have to do therapy.  Except my crib, but since I'm not really sleeping I'm not in there much.  Beth, my PT, has it all set up so I get the best workout possible.

I also started rolling this week.  The best part of this is now I tolerate tummy time better, knowing that I can roll over when I want.  I still takes a good bit of work, but I can roll without any assistance.  I continue to work on sitting.  This is just one thing I am not really interested in doing.

New Year

What a year this past one has been.  There have been so many ups and downs.  The biggest event was my recent normal EEG.   I continue to stump my doctors who remain unsure has to what I have/had, if it will return, and what my future holds.

I continue to struggle with tummy issues and require assistance to poop.  It is always takes several days and then we end up with a day of 5-6 outfit changes and many more diaper changes.....but in the end it all seems to come out.  We will continue to work with my GI doc to see what we can do to give me the most comfort. 

After finally having a "calm" period.....Mommy and Daddy decided we would move forward with my flu shot.  We have been holding off on many of my immunizations as we were too scared what the outcome might be if I got a fever.  Febrile seizures are seizures that result from fevers and my Neurologist is not sure if that is something that might trigger my seizures and/or my Encephalopathy.  So it has and will be a slow process.  I successfully got the first part of my flu shot with no avail.  We will be talking to my doc in the next few days to come up with a plan. 

Today Aidan and I stayed home with Uncle Widg and Aunt Destin.  I was able to get some snuggle time while Aidan got a little TLC.  He has been under the weather today. 

Mommy and Daddy headed off to watch the Broncos play and see a little Tebow action.  Starting Tuesday I am back on track with my therapies.  I guess the vacation is over.

Again Mommy, Daddy and I want to thank everyone for all your positive thoughts and prayers.  We/I would not be where I am if not for the enormous amount of support our family has received over the past 8 months.