Happy Halloween!

It was another tough night last night and I gave Daddy a very hard time.  I was up until just after midnight and then every few hours throughout the night.  This morning started out rough and then I fell asleep!  I slept and slept and slept!  I was able to get all my feedings in today and really had a great afternoon.

Then my brother came home and was very loud and excited for Halloween and Mommy was sure all the noise would wake me but I stayed asleep.  I even put on my Halloween headband and special outfit and I still didn't wake up!

I didn't get to go trick or treating but I did get to see some of the trick or treaters who came to the front door!  I just coughed up a lot of congestion that had been building up for a while and now I feel so much better!  I am all changed in my PJs and ready to get some sleep.  Hopefully I give Beth an easy time tonight.

All Hallows Eve....

It was another tough night in the Shea house.  I went to bed early with Mommy but we were up every hour or two trying to get me settled or comfortable.  I was having lots of seizures and much more mucus than normal so Mommy was doing lots of suctioning all night. 

This morning, Mommy and Brody went to his friend's birthday party so I got to hang out with Daddy!  I slept until about 9pm and then was up having problems again.  It is so hard to tell when I am sick because I always sound like I have lots of congestion, but I just haven't been myself the last few days.  Plus I woke up this afternoon with a slight fever.  Mommy and Daddy will be monitoring it to make sure it doesn't go much higher...it is around 100.6 now. 

Brody put on his costume again this afternoon to go over to the neighbors house and was modeling for me....

I will get to model my halloween outfit tomorrow.  Mommy wouldn't let me put it on in case I decided to had another HUGE poop:-)  Daddy got to finish carving his pumpkin today and I must admit, he gave Mommy a run for her money!  

I am asleep now but I'm sure I will give Daddy a rough time tonight.  Only two more Sunday and then my new night nurse starts!  I got to meet her on Friday and she seemed very nice.

 

Spooky!

It's been a rough day and night.  I had an awful night last night which started out with a HUGE poop that really stressed out Daddy.  There were wipes flying everywhere trying to control the mess but it still got allover the place.  I was up every hour or so with either seizures or respiratory distress so Daddy didn't get much sleep.

My brother was up early to play soccer so I stayed home with Mommy.  The morning started out ok but I was up again a bit later with seizures and lots of secretions.  Mommy tried giving me a bath but that didn't work like it usually does.  

During the bath, she did realize that I am getting too long for my baby tub!  Looks like a trip to the store for Mommy!

All these extra secretions today make Mommy and Daddy think I may be getting sick again.  It is so hard to tell, but I have definitely been acting differently.  This afternoon we got to carve pumpkins!  Mommy carved a cat in her pumpkin and Brody wanted a happy face, so when it was my turn, I asked for a T!  Daddy keeps talking about his carving skills so Mommy is going to let him do his pumpkin on his own.  We'll see what he comes up with.

  I haven't been able to tolerate my feedings today and I am at about half of my normal intake.  I am all set for bed with Mommy now and am having a very hard time falling asleep.  My fists are clenched so tight near my face that it looks like I'm about to enter a boxing match.  I think I may get my valium a little early to help calm me down.

As you may have noticed there is a theme to all my photos.  I am always laying down on my side because that way keeps the saliva from building up in my back of my throat since I still can't swallow.  I get very nervous and the seizures start-up if Mommy and Daddy put me on my back so I am only in that position when absolutely necessary!  I do like to lay on my tummy sometimes too but I can't always tolerate my feedings that way.

I am usually not being held either because it is so hard for Mommy and Daddy to suction me and give me my medicines when they have to hold me too.  Lots of movement makes me upset too which brings on the seizures so I am most comfortable snuggling on the couch or in my bassinet.  I do like to snuggle every once in a while but whoever I'm snuggling with must be prepared to "camp out" for a while:-)

I had a very busy day today with my nurse Tiffany.  First I met my new night nurse Heather who came to meet me and and learn the ropes.  Heather will be working Wednesday and Sunday nights so Mommy can get sleep before they have to go to work.  Then my hospice nurse Lynda showed up and weighed me - I am a whopping 15 pounds and 1.5 ounces!  That is almost half a pound heavier than my last weigh in.

My Brother spent the day at his friend Owen's house and he was wiped out when he got home!  We all had dinner (I'm still finishing mine) and are getting ready for bed.  We just spoke with Dr. Gien and we decided to up my Valium dose since I'm still having seizure episodes that are requiring morphine.  The goal is to not need morphine every day so we will give my new Valium dose a go this weekend and see if I stop having these seizure break throughs....

Snow Day

It was a chilly one today and boy am I glad I got to snuggle in the warm house with my nurse Tiffany.   I had a pretty good night but had a tougher time this morning and early afternoon.  I'm still getting morphine usually once or twice a day to help keep my seizures at bay.  We are also using Hyocyamine to help keep my secretions down that seem to really bother me once the seizures start.

Daddy got home this evening and was cleaning up all the branches that fell from our beautiful ash tree.  The tree still had most of its leaves and the heavy snow that fell today was just too much for the tree to hold so we ended up with lots of broken branches in our yard and the neighbors.

Hopefully the cold temperatures don't cause more branches to fall tonight.  Since we had so many trees down in our neighborhood it will probably be a while before the tree cutting folks will be able to get to the house to chip up all the branches.  Poor tree:-)

Then my brother Brody made Mommy take some pictures of his race cars....

And then I told Mommy to take a picture of me!

I woke up shortly after this picture and Mommy held me for a while.  I was having some seizures but eventually coughed up some mucus and was able to fall back asleep.  My night nurse Darlene is here tonight to take care of me and I am about to get another feeding since my rough morning set me back just a little.

Good Day - Good Night

I had a relatively good last night and good day today.  The phenobarbital and valium combination seems to be helping keep me calm.  I still have moments of seizures and anxiety but it usually is because I'm having trouble managing my congestion and sometimes it is because I have to poop!  I have really put my pampers to the test the past few days and boy did they fail.  I don't think any diaper could have handled that task I gave them.  Mommy said I might as well have been wearing nothing.

My nurse Darlene is here tonight to take care of me and we are all hoping that we don't get too much snow tonight.  I am all snuggled in my pajamas and resting with my blankies.  Now I just need some hot cocoa and a fire.

Bye Aunt Kathy!

It was a fun few days with my Aunt Kathy but I had to say goodbye today.  Mommy and Aunt Kathy did some shopping today before she left and they brought home some really cute stuff I can't wait to wear.  You will see me sporting some cute new outfits over the next few days.  I hope you had a great flight home Aunt K and I can't wait to see you again.  We will all miss you.

I had another up and down night last night and an pretty good day.  My nurse Joy left this afternoon and I of course started to wake up and give Mommy trouble.  Mommy was doing some work in the kitchen when she heard me cough and came running in.  She helped me clear out a bunch of congestion I had brought up and the n I had the biggest mushy poop ever.  It went everywhere but boy did I feel better.  After a pack of wipes, many ruined blankets and a change of clothes later I was finally settled down.   My night nurse Beth is here tonight.  Buenos noches!

Fall is in the air

My night was typical...up a few times with seizures and taking a half hour or so to fall back asleep.  I got to spend all morning and a majority of the afternoon with Daddy while Mommy, Aunt Kathy & Brody went to Anderson Farms to pick pumpkins and hang out.

My brother Brody brought me home a beautiful pumpkin but we didn't get a chance to carve it...maybe next weekend!   After everyone got home, Aunt Kathy watched me while Mommy, Daddy and Brody went to celebrate Celia and Isabel's birthday!  I was a really good girl for Aunt Kathy and didn't give her too much trouble.  They didn't stay out too long.

Once everyone got back from the party we made some dinner.  I was up and down this evening and it seemed like I was always trying to cough up some congestion.  I coughed up some brown stuff which made Mommy and Daddy a little nervous.  I've had so much drool recently that it has been hard to keep the tape on my face to hold down my NG tube.  It was getting pretty loose so we decided to to change the tube and noticed a brown discoloration on the bottom of my tube...we will have to check that out with the doctor tomorrow.

Family Fun

There was lots of bustling activity in the house today.  I got to meet my aunt Kathy for the very first time today which was so much fun.  She sounded just like Mommy and they even look the same too!  Then my special baby sitter Marsha came over so Mommy and Daddy could go out to dinner with Aunt Kathy and great Uncle John and Aunt Marie.  I was such a good girl for Marsha and slept the whole time she was here.

When everyone got back from dinner we got ready for bed and just hung out.  Brody got to read a couple of stories with Aunt Kathy while I hung out with Aunt Marie and Uncle John.  It was so nice to have my family around me.  Even though I was snoozing, I still love hearing their voices and feeling them grab my hands.  

Waiting for Aunt Kathy...

2 seems to be the magic number for the times I wake up with seizures at night.  I was only up for about 30 minutes each time while I waited for my medicine to work.

I am sleeping very peacefully right now and waiting for Aunt Kathy to arrive.

Who has been sleeping in my bed?

I had an ok night and an ok day today but ok is much better than my horrible days....I have been awake a bit today and having some episodes of respiratory distress.  My hospice nurse Lynda stopped by today and weighed me and I gained some weight - 6.65kg (14lbs)!  I've been keeping feedings down but not getting as much as I was a few months ago.  I try and eat as much as I can during the day because as usual, I can't really eat much in the evenings and overnight because my seizures seem to be much worse during these times.

I settled down for a little bit after dinner and my furry brother Finnegan decided to take advantage and sleep in my cozy bed!!

I didn't mind because I was sound asleep but he better get out when I am ready for sleep!




















I am up now and having a tough time keeping my oxygen up and my heart rate down.  Daddy is giving me a nebulizer treatment to see if that helps since I don't get my usual meds for at least another few hours.  We may try morphine if I don't calm down soon.  Mommy is pretty sleepy from a long week at work but it is her turn to watch me tonight so I don't foresee her getting much sleep.  I will do my best but my track record that last few days has not been great...

Little Warrior

Last night was another doozy and poor Daddy didn't get much sleep.  I was up at 11pm and didn't fall asleep until after midnight and was up again with seizures at 4am. My new meds routine seems to be helping and I had a pretty good day today.  It will take a few days for the phenobarbital to get into my system so we are being patient right now.

Fingers crossed that the new meds bring me a little relief.  These seizures are getting much worse and the last few days have been very difficult.  I've been a little warrior and battling through it but can only take so much.  I'm sleeping comfortably now and have some peace for the moment.

9 months

It has been 9 months and 1 day since I was born!  I remember that day well...Mommy and Daddy were so happy to welcome me into the world and I took it pretty easy on Mommy.  I was born with lots of fluid in me and they kept calling me "juicy".  At the time they thought I was juicy because the birth was so quick, but it turns out I had so much fluid in me because I wasn't able to suck or swallow.  It took the doctors about 12 hours to realize that my situation was much more serious than everyone had first thought.

It has been a really tough few days on me and I am wiped out.  I was waking up every few hours with really bad seizures which would send my heart rate through the roof and my secretions would become uncontrollable.  We tried increasing my Valium by 6mls a day and it didn't do a darn thing.  So we had another call with Dr. Gien last night and I am back on the phenobarbital.  We are going to give it one more try and be more aggressive with my dose and I will still get my full doses of Valium.

I had an awful night and morning but was finally able to fall asleep after my loading dose of phenobarbital.  I have been asleep ever since and am happy for that because I have hardly slept at all the past few days.

The doctor is going to call again tonight and check and see how I am doing.  We will come up with a plan for the next twelve hours and take it from there.  We may not have a night nurse tonight so I am going to try and be a good girl for Mommy and Daddy but if my night is anything like the last few nights I am going to have a sleepy Daddy tomorrow!

Happy Birthday Daddy

I was up a little earlier than normal this morning so my nurse Joy wasn't able to give me my first feeding until 9 or so.  She tried giving me my morning bath and I just wasn't having it again.  I didn't really settle down until I had my noon valium.

The afternoon was much of the same and I had a lot of awake time today with seizures and respiratory distress.  We are plowing through so many blankets and spit rags because I am just drooling like crazy when I am awake and seizing.

I finally settled down for a long nap late this afternoon and even slept through dinner, cake & presents for Daddy's birthday:-)  Happy Birthday Daddy - we all love you so much.

My night nurse Beth is here tonight and we are hoping for a better night than the last.  Mommy and Daddy just got off the phone with my wonderful Dr. Gien - what doctors call you at home, let alone after work hours???  So the plan for tonight and tomorrow is to try my same daily valium dose but spread it out to every 4 hours and increase my morphine.  We will re-assess where I am tomorrow night and talk to the doc again.  My medicines are a constant battle.

So Mommy asked me if she could add something to my post tonight and I agreed.  I don't normally allow others to post, but she is my Mom and I read what she had to say and only had a few corrections.

Guest blog by Mommy
I was forwarded a wonderful article today that I have to share (thanks for letting me Tess).

http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=2&hp

The one sentence that really spoke to me was "The only task here is to love, we tell her we love her, not caring that she doesn't understand the words".  It was so nice to read something from someone who feels exactly the way Dan and I are feeling but also makes us so sad to know that another child is hurting and another parent is slowing dying inside.

Everyday is a struggle, but Tessa's comfort and peace are always our number one goal.  There are many times she is peaceful and we are reassured in decisions we have made, and there are other times during the mayhem of this syndrome, that make us question what we are doing.  But there is always that hope that I will see a smile or maybe hear a laugh...maybe one day.

--Jen, (aka, Tessa's Dragon Mom)

Late!

If you are a daily blog reader, you will notice I am posting this a bit late.  Mommy had her pictures and post all set and then I started having trouble so she didn't get a chance to finish the post.

My day was up and down yesterday.  I was having seizures and respiratory trouble whenever I was awake and would have periods of calm sleeping in between.  It seemed like every few hours I was up and seizing.  We tried a nice warm bath in the morning which didn't help.  Brody even tried to give me toys and share his own but I just couldn't relax.

We even unwrapped my new barbie doll that Nana Shea brought me on her last trip here.  Brody was so excited to give it to me but all that excitement and commotion made me a little more agitated.

Some exercises and stretches and my noon Valium helped to calm me down a little and I was able to sleep for a bit.

My morphine dose doesn't seem to be helping anymore.  I got it a few times today and it isn't calming me down like usual.  We will talk with the Dr. tomorrow and see if we might need to increase both my morphine and valium doses.

My seizures were pretty awful again last night.  It took me a while to get calmed down from my after dinner episode and I was sleeping nice and peacefully until Mommy and Daddy moved me into my bassinet.  Two hours went by with lots of suctioning, morphine and hand holding and the seizures seemed like they would never stop.  Finally, with my midnight valium dose about 30 minutes early, I started to quiet down and my eyes got heavy.  It seemed like it took forever, but I finally fell asleep until  about 6am....then it all started over again.

Party Time!

Mommy is tired tonight, so we are going to keep it short and sweet.  I had my last dose of phenobarbital yesterday.  My blood work came back showing high phenobarbital levels and therefore, we are now all sure that it wasn't working.  I am back on just Valium until we decide next week what path to take.

Mommy and Daddy enjoyed a night out last night with their friends Adam and Robin to kick off Daddy's Birthday celebration, thanks to the night nurse Paula and our neighbor Meg!  We all got to sleep in until 8am this morning but the late night is catching up with everyone now:)

Brody and Mommy went out to our neighbor Gavin's Birthday party at the Urban Farm.  The had a blast and I got to enjoy some quiet time with Daddy.  Happy Birthday Gavin!

It has been a bit of the same today.  Lots of seizure episodes, respiratory distress caused by the seizures and lots of suctioning and oxygen to keep me stable.  I have also been doing lots of stretching to see if that help with the pain the doctor thinks I am in from all my seizures.  My therapists were here on Friday and we learned some new stretches which I am enjoying.

As usual my evening is getting difficult.  I was having lots of issues after my stretching exercises and started to really get upset.  **Beware, the following video could make you cry**  As most of you know by now, I don't cry very often, but you can tell in this video something is really bothering me.  Very little sound is coming out, but I was definitely very sad.  I did, eventually settle down on Daddy.

Breaking the Law

Yup, you got it, Mommy and I broke the law today.  I have such a tough time sitting in my car seat.  The minute Mommy and my nurse Tiffany put me in my seat today I went from asleep to awake and the seizures started.  Daddy got home just in time and said get her out of the torture chair and we will just go to the doctor without the seat.  **Warning, if you are an officer of the law, please do not look at the photo below**

So, Daddy drove very carefully while Mommy and I sat in the back of the car.  I still didn't care for the ride but I was much more comfortable in Mommy's arms.  I even fell asleep on the way there and slept through getting weighed (6.7 kg), my visit with Dr. Gien and the flu shot!

I had to go over to the blood lab and that is when I finally woke up.  The nurse at the blood lab put a warm compress on my finger and as soon as she pricked me, I made an awful face. Then she started rubbing my finger to get the blood out which really hurt and my eyes opened and I was very annoyed at the nurse.

Once that was all over, we all hopped back in the car and headed home.  Two outings in one week is a record for me.  I am exhausted now!  The car ride home was pretty awful, but I am resting peacfully now and we are trying to catch up on my feedings since I don't eat before or during my trips out of the house.

Mommy and Daddy are waiting for Dr. Gien to call with the blood results.  It will help them decide whether or not we need to stop the phenobarbital or change my dose.  If we end up stopping phenobarbital, we will have to take another course of action with the medication.  We will see what happens......

Difficult days

Everyone seemed to be worn out yesterday trying to recover from our rough day at the doctors office.  I had a rough Monday night with my new night nurse Beth.  She is going to be watching me every Monday and Thursday night (Yay!!).  I really broke her in having lots of seizures and secretions that we were finally able to get under control with morphine.  Then I was able to fall back asleep until early in the morning until I woke up again with more seizures.

That seems to be the same pattern over the last few days.  I have had much more awake time but not in a good way.  I was up most of the day today, but finally fell asleep after my increase dose of morphine.  I even slept through all the noise my loud brother makes when he gets home from school!

So tomorrow is another trip which I really hate!  Since we were not able to get blood on Monday at the pediatricians, we are heading to the Children's Hospital to see if they can get some blood from me.  I have been retaining water and it is very hard for them to find my veins which makes drawing blood very difficult.  The will use the blood to check the phenobarbital level in my blood to see if we either need to increase my dose or stop it all together and try something else.

The doctor is also going to check my kidney function and electrolytes.  Since we are making the trip, we will also take time to visit my neonatologist/pediatrician Dr. Gien.  I am hoping we will have an easy trip!

Four times is not a charm

I had an awesome night last night.   It took me a while to settle down, but once I did I slept through the night and didn't need any suctioning and my oxygen and heart rate alarms were silent! That is a first since I can remember.

I stayed asleep for almost the entire morning and even slept through my bath.  Mommy came home and we all went on a little field trip to the doctors to get my blood drawn.  We went over to Brody's doctors office, also were I used to go to the doctors too, because it is closer than the children's hospital but that didn't turn out to be the best idea.  Four nurses, four pricks annnd almost two hours later we still had no blood:-(  I was totally worn out and overstimulated from that experience and it is not fun to get all the awkward stares and questions. Mommy and I were both wiped out when we got home.

We are waiting to hear from dr. Gien but we will probably go to the children's hospital special care clinic in the next few days to take my blood.  Hopefully it we have success!

For Crying Out Loud

I was hoping to take it easy on Mommy last night, but I just had a problem relaxing.  I was making a lot of noises and cried out many times.  Since I don't cry very often, Mommy and Daddy were very worried, but after some versed, phenobarbital, and morphine I finally relaxed and was able to get some sleepies.  Today I spent a bunch of time with Nana (see how pretty my Nana is in the picture) while Mommy, Daddy, and Brody go to to go out shopping and get some lunch.  After they got back, I began to really have problems.  I'm not sure that the phenobarbital is working for me, but we are going to give the double doses a try through Monday and then talk with the Doc and see where we go from here.  If it doesn't work, then I a little bit scared because I'm not sure what we are going to do.  It seems as though only the morphine seems to consistently work in calming me down for at least a little while.

This evening, it's been more of the same with tough seizures and a lot of crying out loud over and over again.  This makes it very hard on Mommy and Daddy.  I had to get another dose of morphine and that seems to have helped me sleep.   While asleep, Mommy was able to get another feeding in.  I love mommy milk, but it's hard to keep down when I'm awake and having seizures.  Well, Daddy is going to take care of me tonight.........I can't wait!  I'll let ya know how it went tomorrow.  Good night and don't let the bed bugs bite.