Issues

The tummy issues continue.  It seems that solid foods are not agreeing with me even though I really like them.  We are still dealing with the unknown.  Depends on who you talk to as to what their thoughts are on the cause of my tummy issues are.  With the introduction of solids (oatmeal, peas, squash, pears) I have struggled more and more to have a BM.  All my BM's for the past several months have required assistance.  The last several days have been the worst.  It starts around 2:30am and I scream inconsolably for a few hours.  The only thing that calms me down is a bottle and even that is short lived.  As you can tell I am definitely becoming a chub-a-licious baby.

We have several things in the works at this point.  Mommy is working on trying to get in home music therapy since the two things that I respond to the most are music and my brother Aidan.  I am scheduled to go to another GI specialists next week.  Mommy and Daddy are desperately trying to help me resolve this.  My basic skills are still suffering due to the introduction of solid foods, but after a day and a half Mommy milk only I am slowly starting to rebound. 

With all that is going on I am also struggling with bad cold.  I haven't been able to shake things off easily and they seem to linger.  All this plays into my lack of progress lately.  Hopefully my tummy and breathing issues improve soon. 

Gobble, Gobble

Well Turkey Day came and went.  I survived the car ride to Boulder to be with the Parker's.  We made a last minute judgment call and decided to go since I was having a good morning.  It was my best car ride.  I had plenty of snuggle time with Kate, tried to nap, and even pooped on my own.  We are getting excited that solid food is agreeing with me.  The car ride home was another story.  I was tired and over stimulated and the only way I can communicate that is to SCREAM!!!!    Which is what I did all the way home.  Mommy and Daddy keep telling me that I should give the car a chance since most babies love to be in the car.  I'm still trying to decide how I feel about that. 

Today I tried to recooperate....not so well....I woke with a cough and runny nose and did not sleep at all.  Guess my long naps were only temporary.  I spent the day watching everyone decorate the house for Christmas.  Aidan was running around telling me all about "Peter" our Christmas Elf who came to visit. 

Of course we watched to LSU game..... Aunt Destin has found her new calling.  She made me an LSU dress while back home.  I can't wait to wear it......

Once it became apparent that LSU had the game in the bag Mommy decided to play dress up with me and literally squeeze me in outfits that were way too small..... (Thanks Priscilla)

Then came the tu-tu.  Really Mommy......

One more week and I will be off Keppra, the last of the anti-convulsants.  Now the waiting game begins.  We wait and see how things work out.  In the mean time I will continue with all my therapies.  I have lost any interest rolling over or sitting so we are focusing on my head holding (which comes and goes depending on the day).  I still have no interest in using my hands except the my thumb which I love.  BUT we will keep working.....

Sleepies....

Finally.....sleep has arrived.  For the last 3 days I have napped for more than 30 minutes in the morning.  We are not sure but are feeling the lack of sleep has been med related, despite what the doctor says.

After having peas for several days, it happened.  I pooped on my own.  NO assistance needed!!!  This is a huge deal.  It's not like being constipated.....I just can't go....there is something in my brain that is preventing me from going, but the stars aligned and it happened!!!!!  It was such a big deal to us that Aidan decided to sing about it...... (he just happens to be working on rhyming in school....lucky me.)

Jingle Bells, Nezbah smells

Because she ate some peas.

Then she passed a little gas

 and dropped us to our knees.

So after that insult we moved on to squash......Mommy roasted it up today and all I can say is YUMMY!!

Apparently I'm not the only one who loved it.  Cisco couldn't stop licking my hands every time I started to lean over in my chair. 










HANDS.....With all the work on trying to rollover (5 times on my own now), sitting (I can prop sit for 7 seconds on a good day), and eating solid foods my hands have suffered.  I have never really been able to use them and continue to struggle on a daily basis.  My PT and OT are now working hard with me on using my arms.  The bottom line is that I can suck my thumb when I want to (which is a good bit of the time) but I cannot use my hands are arms other than that.  For those who don't understand how big of a deal that is ...... try doing the most basic of things during the day without using your arms.

Peas

This has been a week of transition.  Kelly, our new nanny, has been learning the ropes.  Between my ever changing schedule, meds, random eating habits, tummy issues, therapies, special requirements, and Aidan.....we have really kept her on her toes.  She has stepped up to the plate!!  Her main goal is to help prevent me from having to be in the car and as she found out on Friday it's not fun and a lot of work to keep me from having an episode.  We needed to see if I had an ear infection (I don't.....but we have no idea what is going with me).  I had a very difficult day on Thursday.  I was inconsolable, did not sleep, and only wanted to be held by Mommy.

On a good note, I love Oatmeal so Mommy decided after a few weeks it was time to try something new.  Peas!!!!  Yes with all the great things Aidan gets to eat, I got stuck with Peas.....

  .....apparently I only have to suffer through them for a few more days and then I get squash.  I say bring it on!!!

Help has arrived

Yesterday was Ms Kelly's first day.  She will be helping out several days a week by watching me so I don't have to get in the car and go places.  We all know that rarely ends well.  Ms. Kelly is great and full of energy.  I was a little angle while she was here for the first few hours learning my routine, but as soon as Mommy left to get Aidan from school I let her have it.  You know I needed to give her a test drive......  She stood up to the test....I think I'll keep her around.

Grandma is back home from Michigan.  We fell back into our routine....eating, sleeping, and fussing about my tummy.  Grandma kept telling Mommy I have a "temper"....what ever that means.  Mommy decided to do some research on Keppra, the last anti-convulsat that I'm on and will be off of in three weeks.  She had decided along time ago that she would not read about stuff like this on the Internet since it only got her worked up, but tonight she found all kinds of info from parents about her infants/children/adults have Keppra-rage.  My doctor told Mommy and Daddy a while back that any agitation would only last in the beginning - but that is not what the parents of kiddos on this med say.  Mommy is hoping that once this is out of my system we will be able to get on a schedule.  I'm am truly a REALLY happy baby - smiling ALL the time - and then the fussing and screaming begins for no apparent reason at all.  Maybe I'm start sleeping better during the days and the purple circles under my eyes will finally go away.


After a difficult OT session this morning, Mommy's friend Candice and her son Finn came by to visit.  I did some exercises while Finn played with Aidan's toys.  After a short nap Ms. Beth came for PT.  I had a good session.  On Friday I have an evaluation for Speech Therapy and Mommy is trying to see if she can find Music Therapy as well. 

Yummy I really do love my Oatmeal!!!  I will be starting a new food next week.  I can't wait to see what it will be......Aidan voted for Chocolate!!!

Family day

After all the company and help we had over the last week if was just the four of us today.  Trying to get back into a routine we all stayed in our 'jammies today.  Well Aidan and I changed but I don't know if that really counted. 

Doing exercises in a laundry basket.

The morning stated off with me in Christmas PJ's.  I needed an outfit change in the middle of the night and Mommy did have her contacts in so I ended up in Holiday PJ's.  Well that opened the door for Mommy to put me in some ridiculous Hats and booties....

 After a morning of crazy photos I sat and watched Mommy and Aidan play the Wii most of the day..

So my tunny issues continue......my magic time sees to be 4am.  I don't mean to wake Mommy and Daddy up but it hurts so bad.  We will continue to see what the problem is.

I worked had today but still struggle to use my hands for anything but sucking my thumb.  Oh well tomorrow is another day and we will keep working on my arms/hands.

Mission Accomplished

Well Marmee came to Denver with a Mission and we are back on track.  Mommy was getting overwhelmed with everything that was going on so Marmee flew in and got us back on track.  Aidan and I now have someone to play with in the afternoons while Mommy does what ever Mommies are suppose to do. 

Today was a good day for the most part.  I have developed a new pattern.  Waking up at 4 am screaming for an hour or so till my tummy feels better and them again in the evening.  I still cannot poop without assistance.  The problem is that everyone else has to "Guess" when it is time to start "assisting" me with the pooping issue.  Most of the time it can take days to get results and the doctors are of no help in this area.  It is a guessing game since Mommy and Daddy have to guess what my issues are and what their plan of action is.  My constant through all of this ........ Aidan...... when even I'm having problems he he comes over to me signs and rubs my toes.  I love him so......rarely do I not respond to him.......Mommy now calls him the Nezbah Whisperer....I have to agree. 

The last few days have been full of excitement.  I have spent a good bit of time with Marmee, Aunt Destin, Uncle Widg, and Grandma since Wednesday was Mommy's birthday. 

Mommy is really taking the birthday thing to an extreme.  Not really but the house has been busy.  I did go out for Mommy's birthday lunch but the ride home, once again put me over the edge.  This once again proved that the car is NOT the place for me. 

Mommy and Marmee have been on a mission to try and problem solve how Mommy can get basic things done (like picking Aidan up from school, go to the grocery store, etc.)  Well thanks to the help of Marmee and Papou the answer is Kelly!!!  Kelly will be coming to stay with me 3 afternoons a week and helping out with Aidan and I when I have my appts.  Between all my appts and my struggles with the car and tummy issues planning a schedule is difficult.  I might be adding a speech therapist to the mix and some individual music therapy as well.  Wow, what a busy schedule. 

One thing is for sure.....I'm a happy baby!!!

.....and if this is a preview of what is to come I'm not sure I'mready for the Holiday

Happy

With help from Marmee, Mommy has been able regain her footing.  We are tying to work on getting a schedule.  It is really difficult with my meds changing every week, illness, tummy problems, and multiple therapist at different times on different days. 
Today was a great day!!  One of my favorite things is to sit in my swing and stare at the baby in the mirror.

I have been working really hard at eating my oatmeal and really enjoying myself.....

Today was a good day.....

The Calvary has Arrived

Wow what a busy week.  After a birthday celebration at home (6 months old) with Mommy, Daddy and Aidan the week just seemed to become more intense.  I have decided several things this week.....1) I will scream and yell every evening because of tummy pain.  2) I will only sleep for 30 minutes at a time during the day 3) I really like being held and let people know that 4) I make large quantise of spit when ever Mommy tries to feed me oatmeal and 5) I will not ride in the car for more that 20 minutes or anytime after 3pm.  I am not a fan of the car.  I do not like being strapped in and after 15 minutes will scream to the point that Mommy (and Daddy got to see it this weekend) have to pullover and hold me due to concerns I might have a seizure.  I have a very low seizure threshold.  Because of this it makes it extremely difficult for Mommy to take me anywhere, thus on grocery store, no errands, and picking Aidan up from school is quite the treat.  I am very lucky to have such a wonderful bigh brother.  He just sits there and listens to me scream all the way home every day and rubs my feet and sings to me.  Some times it helps. 

I did make it to Uncle Widg's and Aunt Destin's last night in hopes of watching the LSU (Geaux Tigers) but we had to leave early and boy did I have a diffucult time getting home.  We had to pull over on the side of the road for 1/2 a hour while Mommy tried her best to calm me down.  We made a family decision after that......no more unnecessary car rides!!!

Sunday..... the reinforcements have arrived.  After a difficult week and Mommy trying to find support in the afternoons so she can pick up Aidan and run errands they came.....Marmee and Grandma arrived.  Marmee in for the week to help Mommy try and catch up and Grandma back from Michigan.   We are so thankful to have such wonderful family and so glad they are here.

HAPPY 6 MONTH BIRTHDAY

WOW.....It's hard to believe I'm 6 months old already.  I have come so far in a short amount of time.....enough said......

Today my new routine started.  I will be eating Oatmeal in my highchair.  I'm still not sure what I think of this stuff, but Mommy keeps telling me it's yummy.....I'm not sure I believe her. 

......and of course my day wouldn't be complete if I didn't have some special time with Aunt Destin.  She came by this afternoon so Mommy could have so personal time to herself.....Thanks Aunt Destin.

Work, Eat, Sleep, Repeat

Yes this is what I did all day toady.  Woke-up just in time for OT - Ms. Julie thinks I will be sitting on my own my Christmas.  Then I had PT today - Ms. Beth agrees with Ms. Julie - yeah.  After my third 30 minute nap (I'm not really into long naps - sorry Mommy) Mommy worked with me on more toy grabbing.  There was some Oatmeal mixed in there as well - still not sure what I think about that.  Things kinda went down hill after we picked Aidan up from school.  Daddy had to work really late tonight so Mommy was solo and after 30 minutes of non-stop crying around Aidan's bedtime Mommy hear quiet and when she looked up this is what she saw.....

Aidan had told her "Let me take care of her I know what I'm doing." Well it worked.....we sat and talked to each other like that for 20 minutes.  Mommy called him the Baby Wisperer.