Bassinet

I had a pretty tough night again in my bassinet....This time Daddy slept next to me and he was suctioning me out every few hours.  My heart rate was pretty hight when I woke up this morning and I had a slight fever.  My new nurse Tiffany arrived - she will be my Wed-Thursday nurse now.  Paula and Joy were filling in until Tiffany could start.  Tiffany put me on oxygen and gave me some Tylenol.  That seemed to help my fever and bring down my heart rate.  I was able to stay off oxygen after this morning and had a pretty good rest of the day.

Mommy got home with my brother Brody and we all hung out while our yummy dinner heated up - thank you Tricia for the yummy enchilada casserole!  Daddy's work are providing us meals two times a week which is really helpful now that Daddy went back to work full time.  We had a beef stew earlier in the week and are still enjoying the Tiramisu that Steve made us.

Daddy is feeding me now and of course as soon as he changed me into my pajamas I pooped:-)  I'm having a little bit of a hard time with my last feeding but hopefully will settle down soon.  We will try the bassinet again and hopefully it gets better soon.  I'm trying to get used to it....

Bedtime

I slept all of last night in my bassinet but wasn't all that happy about it.  I was up every few hours having seizures and needed to be suctioned.  I had a pretty good day and was oxygen free for the entire day.  My nurse Paula gave me a bath and then had to give me some Tylenol because I was running a little fever.  Other than that things were status quo.

I just finished my last feeding and I am giving the bassinet another try.  It is Daddy's turn to watch me tonight so I will try and be better.

No more oxygen:)

Yesterday was my first full day without oxygen....yay!  I am also off my pulse-ox full time but we still do spot checks every few hours just to make sure I'm doing ok.  This morning I gave Joy a bit of trouble.  First I kept coughing during my morning feeding and she had to suction me a whole bunch of times.  She was taking the feeding really slow and then I pooped through my diaper, up my back and all over my boppy:)  It was so bad that she had to change me immediately but then I spit up my whole meal when she was cleaning me up.  To top it all off, I spit up with such force that my tube came out of my nose!  Then Joy had to call Mommy to have her come home and help put my tube in.  That was a good trick on my part to get Mommy to come home from work and visit me....I may use that one again:-)

I was worn out after my busy day and slept after my 5pm feeding which was nice for Mommy because she was able to make dinner while I slept.  I started to wake up after dinner and got some pictures.  Daddy is feeding me now and I will try and go to bed soon.  Daddy set me all up in my bassinet for bedtime and we are going to give sleeping by myself again the old college try....

To O2 or not to O2

It was another beautiful day in Denver and I only got to enjoy it from the window.  I had to use my oxygen most of the day today so I wasn’t able to go outside again.  My brother however, enjoyed lots of outdoor time with his friends Gavin, Caleb, Celia and Isabel.  I tolerated most my feeding today and I was coughing up lots of stuff again.  I am still taking my antibiotic but not sure if it is really doing anything.  I had a high temperature this morning but was able to come out of it on my own.

This evening Mommy was able to take me off my oxygen around 7:00 and I haven't needed it since.  This happened last night too and around 11 or so we put me back on the O2.  Hopefully tonight is different.  With all the extra activities going on today we didn't get a picture of me:-(

Summer is here!

It was so hot today!  My brother Brody got a new pool and he and Daddy were outside all morning setting it up.  I was going to go outside too but it was too loud for me in the morning while they were running the air compressor.

I have been on oxygen off and on all day.  This afternoon was the hardest part of the day for me because I would go through spells where I was trying to cough stuff up.  When I finally was able to cough out stuff, I would relax and fall asleep for 20 minutes or so and then start the process all over again.

Overall, I have been much more awake today than the past three days so we are hoping that I will be able to be off oxygen soon:) Mommy and Daddy keep trying to take it away, but my stats usually drop below the safe levels and they have to put the mask back on.

So Mommy took a video of me and has been trying to upload it forever which is why my Saturday blog is soooo late.  She finally was able to save it as a smaller file.  Enjoy:-)

O2

Another day on oxygen:-(  I had another pretty good night and was able to sleep quietly all night on my oxygen.  My nurse Ines came this morning and Mommy was able to run lots of errands.  I was having labored breathing again and Ines gave me a dose of morphine which helped right away.  Then around noon I got a nice bath which put me to sleep!

After my bath, Ines noticed that my heart rate was falling and by that time Mommy had gotten home.  We called my Hospice nurse Lynda and she stopped by to check on me.  Lynda didn't have a reason why my heart rate was falling but did say my lungs sounded clear which is good.  I will keep taking my antibiotic so we can rule out a bacterial infection.  If I don't get better in the next day or two, we will know that my difficulties are just a progression of my disease.

Daddy is giving me my last feeding of the day.  Then, I hope we all get into bed soon!

Ready for Bed

All snuggled in for bed with Mommy and Daddy:-)

Still on oxygen

I have been on oxygen since last night.  Mommy and Daddy tried to take me off a few times but my oxygen level just drops too low so they have to put me back on.  I was delivered an oxygen concentrator last night that concentrates the oxygen from room air so I will never run out:)

Today the hospice nurse came by to check on me.  She spoke with the doctors and they are not sure exactly what is going on so we will try antibiotics and if they don't help then we can rule out an infection and assume it is just the progression of my disease.  I am resting comfortably and really relax with the oxygen on.  I tried morphine today too because I was having lots of labored breathing and it really helped.  We will try that again if I have trouble again tonight.

Oxygen

I had a pretty good morning with my nurse Paula.  I got a bath, my nails trimmed and even sat outside for a while.  But around 5pm I started to have labored breathing and a fever.  My heart rate jumped to 200 and my oxygen fell so low that I needed my oxygen.

Tylenol brought my fever down and my heart rate also came down but Mommy can't take me off oxygen yet.  My heart rate is also going back up ever time Mommy tries to feed me.  Hopefully I don't need my oxygen all night! 

Sleepy

I had a pretty sleepy day yesterday.  This video was taken last night just after my last feeding.  As usual, my last feeding is my hardest.  Mommy started at 8pm and I got about half way through by 9:45 pm and we decided that was enough.  I finally began to fall asleep then and so did Mommy:-)

Work-day for Daddy!

I had a really tough night last night.  I spit-up my entire 8pm feeding more than 1/2 hour after I finished eating.  It was pretty scary for me and Mommy and Daddy had to suction me out a few times to clear my airway.  I was able to fall asleep after that but was then awake a few different times needing to be suctioned and having seizures.  Around 4 or 5 am I finally relaxed and fell asleep.

Daddy had his first full day of work today.  I missed him a lot:-(  It was a busy Monday for me here at the house.  My nurse Joy came early this morning and then my physical and occupational therapists came to meet Joy and show her some stretches and things to help me relax.  Joy gave me a bath and then my hospice nurse Lynda stopped by to see how I am doing.  She increased one of my night time doses of valium to try and help me sleep.

Then Mommy and Daddy came home from work and Daddy, Uncle Pat and Brody went out to dinner while Mommy and I snuggled on the couch.  My Uncle Pat leaves tomorrow - we will miss you! Thank you so much for coming to visit us.

Thank you Susan for my pretty outfit.  I got so many compliments on it today:-)

Happy Daddy's Day

I had such a great day today with my Daddy!  I tried to spend as much time as I could with Daddy because tomorrow is his first day back at work:-(  I am really going to miss spending time with my Daddy and I'm sure my Daddy is going to miss me too.

I think I have the best Daddy in the world

Then Uncle Pat made us all a wonderful dinner - pork tenderloin stuffed with dried fruit and a port reduction and creamy risotto.  Yummy.  Then for Daddy's day, we had an oreo cake for dessert.  Needless to say we are all stuffed. 

I'm eating my last meal of the day now and we are all going to hit the sack early tonight so we are bright eyed for the big day tomorrow.  Hopefully I have a good day with Joy tomorrow.

Happy 5 month Birthday

I am 5 months old today!  Marsha came over this morning to watch me while Mommy, Daddy, Uncle Pat and Brody went to the amusement park.  I was pretty good for Marsha today and she stayed with me for a few hours.

Uncle Pat made us a yummy dinner tonight - chicken skewers with nectarine salsa and couscous!

Then we all had some yummy cupcakes to celebrate my 5 month birthday!!!  I made a few wished before Daddy blew out my candles and I hope they come true.  My brother really enjoyed the cupcake too!

Uncle P

I spent the day with my nurse Ines today and had a pretty good day.  I got a bath this morning which made me so relaxed I fell asleep!  Then Ines dressed me in a pretty dress from my neighbors Celia and Isabel.  I have lots of cute summer clothes that I can't wait to wear.

Brody had to stay home from school today but he was feeling better so he Daddy and Uncle Pat went to the zoo in the morning.  I wish I could go to the zoo too, but I still have lots of trouble leaving the house.  I don't like to ride in my car seat when I'm having seizures and I really don't like moving around a lot.  I think all the movements make me very dizzy and I then have a hard time keeping my food down.  Mommy and Daddy take me on short walks around the neighborhood but find it is best if I stay close to home.

Uncle Pat and I got to hang out today outside with my brother.  It was drizzling off and on this afternoon so we didn't get to sit outside too long.

It is time for bed soon but I'm getting some late night snuggle time with Uncle P before I hit the sack!

Quick

So I finally had a good night last night.  It took a few nights to figure out but Mommy and Daddy finally realized that I sleep more soundly on my tummy!  It was a busy day for Daddy and Uncle Pat since my brother came home early from school and turns out he has strep throat.  He was really upset all day long but hopefully he wake up tomorrow feeling better.

I spent the day with my nurse Joy again.  I had a really good day.  I didn't spit up at all during my feedings and had minimal outward seizures.  Daddy is giving me my last feeding now and I am taking it pretty well. Hopefully I have another good night tonight.

Daddy and Uncle Pat are slacking on the photos but I hope to get one tomorrow with Uncle Pat.  Mommy is sharing a photo taken the day I was born.  It is amazing how different I look!

Paula

I had another difficult night last night but it was definitely a little better than Monday night!  I woke up a few times and Daddy used the suction machine to clear me out and I was able to fall back asleep.  Around 4 am I woke up having seizures and couldn't fall back asleep, so Daddy had to put me on his chest to sleep and I was able to calm down pretty quickly and fall back asleep.

So today my new nurse Paula started.  She is going to come every Wednesday to take care of me and I liked her a lot.  I was running a little fever this afternoon, so Paula gave me some medicine to help bring my fever down.  I had some seizure episodes with Paula and she hooked me up to my pulse-ox and I was showing slightly low oxygen levels, but didn't need any oxygen since my color still looked ok.

Uncle Pat cooked us a wonderful meal tonight - thanks Uncle Pat!

I was able to sleep while everyone enjoyed their dinner which is a real treat for Mommy since she usually holds me at the dinner table while she eats:)

Then Uncle Pat gave me a cute bunny from the Atlanta Shea's that I plan on snuggling with tonight:)  Thank you for my bunny!

P.s. I am enjoying all the fun summer outfits Nickie!  

Uncle Pat is here!

Just as Mommy was telling everyone how good I was being at night, I had a really bad night last night.  I was having my normal increased night time seizure activity but it didn't seem to subside like it usually does.  When Daddy brought me to bed I was still having lots of seizures and feeling anxious.

We all seemed to doze off for a while but I was up again having seizures off and on through the entire night.  Daddy tried giving me my other drugs but that didn't help.  I was getting suctioned every hour because my seizures increase my congestion.

We were all pretty tired this morning!  My Hospice nurse came by today and we are going to increase my night time dose of valium.  I will try it for the first time tonight and hopefully it works because I am exhausted.

My uncle Pat arrived this afternoon.  Joy was here to take care of me again today so I didn't get a chance to snuggle with Uncle Pat but I am hoping to do that tomorrow!

Joy:)

So my new nurse Joy started today.  She will be taking care of me three days a week and we got along very well.  Daddy had a busy morning trying to show her the ropes and getting Brody ready for school but it all worked out ok.  I was pretty good and only spit up a little bit during my afternoon feeding.

My Valium seemed to work well for me today except for a small episode this morning when I needed my hyocyamine drops to help calm me down.  I like that the Valium keeps me from getting anxious during my seizures but it is making me very weak and I don't hold me head up like I used to.  I'm just very loosey-goosey as Mommy says.

Daddy is feeding me now for the 1st time today and I am having a tough time.  I keep spitting up and Daddy is having to suction me a lot:-(  Hopefully I can finish without bringing my whole meal back up.

Bye Bye Pop-Pop!

We had a busy rest of the weekend.  Yesterday evening Daddy and Pop-Pop went to the baseball game and Mommy's friend Gay came over to help with Brody and I.  I was pretty good for Gay but even she noticed I was having many more seizure movements than the last time she came to see me.  Mommy gave me my regular dose of Valium at 6pm and I was still having lots of seizures so she gave me a dose of Aivan too but that didn't seem to help.  After an hour or so we tried Hyocyamine but that didn't help either. I started to calm down around 10 pm so Mommy gave me my feeding and I was able to keep it down.  We both crawled into bed around 11:30 and I slept pretty late this morning.

I woke up to say goodbye to Pop-Pop.  Brody and Daddy took him to the airport this morning but not before I was able to get a picture with him!  Goodbye Pop-Pop, I will miss you!

Then this afternoon Daddy's friend Brian from Manhattan Beach stopped by along with Daddy's friend Jerry.  Brian was in town for the weekend to enjoy some spring skiing.  I forgot to get a picture with him but I won't forget that laugh!  Thank you for visiting me Brian.

I had a tough dinner time feeding and am just now finally getting sleepy.  Daddy is giving me my last feeding and hopefully we will all be in bed soon.  I am looking forward to meeting the two new nurses this week and my Uncle Pat arrives on Tuesday!

1st Day of Nursing!

My new nurse Ines was here today.  It was a very busy morning for her 1st day.  First Mommy and Daddy showed her around and then Mommy left for work.  Then the Hospice nurse came by and then the cleaning lady and the lawn folks showed up (thank you Rubinstein's & Simon's for the lawn service!).

Daddy and Pop-Pop got to go out for lunch while I got to know Ines and then the Director of nursing for PPHC came by to drop off my patient home chart and talk with us and Ines.  Then Mommy got home and shortly afterwards my brother came home and we had the Freedman's over for dinner.  It went from quiet to crazy but was lots of fun.  We all sat outside and Daddy grilled some burgers while my brother and his friend Ajax ran around the backyard.  Mommy fed me dinner and then Daddy held me.

I didn't hold my dinner down and ended up spitting up most of it.  I am having lots of seizures now and I don't know if I will be able to hold down another feeding tonight.  Hopefully the seizures calm down soon so I can get some rest tonight.

Thank you Marsha

Today was Marsha's last full morning with me:(  Hopefully Mommy and Daddy will have her come back to help take care of me and give them a break!  I really liked spending time with her and will miss her.

I had a pretty good night last night and day today.  It was a light day for seizures and spit-up which is always a nice.  I even slept by myself and everyone got to enjoy dinner while I slept.  Mommy usually holds me and eats dinner at the same time, so this was a real treat for her.

I still didn't get a good picture with Pop Pop Shea but Daddy promised to get one tomorrow!!  Mommy was able to sneak a picture, so see if you can spot Pop Pop below...

Tomorrow is going to be a VERY busy day.  It will be the 1st day of full time nursing so I will meet my Friday nurse Ines for the first time.  Then the Hospice doctor and my Hospice nurse Lynda will come by to check on me.  

Pop-Pop is here!

I've been having more full body seizures these days, especially at night.  They seem to start-up just after my 5pm feeding and then last until after my 8pm feeding.  Mommy and Daddy can usually get me to calm down around 10pm and then I tend to sleep the rest of the night with only having to be suctioned 2-3 times throughout the night.

I now officially have three full time nurses that will start on Friday.  They will be coming everyday next week to get used to my routine and Daddy will be here to show them the ropes.  I can't wait to snuggle with all of them - they better be good snugglers or they are fired:-)

Pop-Pop came this afternoon!  I am hoping he will get a picture with me soon but he is a hard one to capture with a lens.....

Protecting my Sister!

Busy day yesterday.  Mommy and daddy met another nurse and I got set up with the PASCO agency so Mommy and Daddy can get respite care.  That took a long time and the nurse did not leave until after 6pm so we all had cheerios for dinner!

Mommy and I were sitting on the couch and my furry brother Finnegan decided to lay right next to me.  Even Finnegan loves cuddling with me.

Bye Uncle Rich!

I had a pretty good day.  I got to sleep later with Daddy and then Brody, Daddy, Mommy, Uncle Rich and I all went to the local bakery for lunch.  I even ate my lunch out which I don't get to do that often:)  Then we came home and sat outside in the sun before Daddy had to take Uncle Rich to the airport.

We will miss you Uncle Rich, thank you for visiting me!  Hope you have a great flight back to Maryland and come visit us again soon.

Still Sleeping

It is 8:30 and I am still sleeping:-)  Daddy is feeding me and Brody came in to catch a few zzzz's with me.  I had a pretty good night but my last feeding was tough.  I ended up spitting up most of it about 10 minutes after I finished eating.  Mommy suctioned me out a few times and then I fell asleep.

Summer is finally here:)

It was a beautiful day here in Denver today.  I slept in this morning with Mommy since she was out late last night.  Then we all played outside this morning and then Daddy, Uncle Rich and Brody went to the park while I stayed home with Mommy.

I had a pretty good day overall with just my normal spit-ups and need for lots of suction to help keep my airway clear.  Uncle Rich fed me again today which gives Mommy and Daddy a break.

Then this evening we grilled out and enjoyed dinner outside.  It was so nice to get to spend some time outside enjoying the warm weather.  I laid in my boppy while everyone ate dinner and played.

Fun Friday

I had another busy day today.  My nurse came to visit me this morning.  My new drug regime of Valium every 6 hours seems to be helping along with the Hyoscyamine sulfate drops when I get too congested or anxious.  Ativan just didn't seem to be helping me calm down anymore so I'm not taking that very much.   Mommy and Daddy still have to suction me out a lot to keep me from getting too congested but I am still able to sometimes cough up congestion in my throat.

This afternoon another nursing agency stopped by to meet me.  I will get to meet two more nurses on Monday and then Mommy and Daddy will decide which nursing company to choose.

I got lots of good snuggle time with Uncle Rich today.  He even fed me:)

This evening Daddy's friend Adam came over to visit while Mommy and her friend Robin went out for dinner.  It was a fun evening.

Uncle Rich

Mommy took the day off from the blog yesterday.  She was in bed at 8:30 and too tired to help me with the blog...

I had a pretty good day today.  Mommy and Daddy interviewed a few nurses today that might take care of me when Daddy goes back to work.  They were both really nice but we will meet another nurse tomorrow and then decide which company to choose.

Uncle Rich came into town today and I can't wait to cuddle with him:)  He is here for a few days and I'm looking forward to spending time with him.