Tiffany to the Rescue

I started out pretty rough last night so Mommy picked me up (yay!!!!) and held me for the first part of the night.  I was having lots of spasms and when I get into the hook of Mommy's arm I just seem to relax and fall asleep:)  Mommy woke up about midnight and I was really relaxed so she decided to put me in my bassinet (booo!!!!!) but I forgot about my new Z-flo positioners (yay!!!!!) and she got me all snugged in and I went right back to sleep.  I slept very soundly for the rest of the night and had great stats and didn't need to be suctioned at all...that Mommy could recall anyway.

My nurse Tiffany came today and we did the speed-feeds again today to get all my feedings in before 7pm and it was a huge success.  I didn't have any big spit-ups and had good stats all day except for an elevated heart rate this morning.  Tiffany stayed late with me tonight so Mommy, Daddy and Brody could go out to get a bite to eat.  They haven't been able to do that during the week in a very long time!  I wish I could have gone, but I was happy as a lark in my Z-flo enjoying the peace an quiet with Tiffany before my crazy brother came home!

After Tiffany left, I was sitting with Daddy and my heart rate started to increase and my oxygen level started to drop.  I was making lots of noises which I rarely do and was trying to cough out some mucus.  It took me about 10 minutes and gave Mommy and Daddy a good scare, but I was finally able to get it out with the help of the suction machine and I am now resting comfortably.  My nurse Paula is coming tonight to watch me so Mommy and Daddy can get at least one good night of sleep this week.  We are still looking for another nurse to watch me a few more nights but so far no luck!

Day eater

I've been having a tough time with my last two feedings of the day and yesterday was no different.  Daddy was able to get all of my 8pm feeding down but it came right back up about 10 minutes after I finished.  It got all over me, Daddy and the couch. We all had to change clothes while Mommy cleaned the couch.

Today my nurse fed me every 2.5 hours and I started my last feeding at 6pm which is much earlier than normal to avoid eating during my tough time of day (night time) and got about 3/4 of the way through it and had to stop about 8:30.  The good news was that I didn't spit up at all! 

 I love my new Z-flo positioner!  I slept so soundly last night and barely needed suctioning which makes them worth every penny.  I used them a little bit today and really liked the prone position.  It is hard to keep me from pulling my head back and to the side, which is why I look a little crooked in this photo.

They are so soft and keep me nice and contained and snuggled so I can really relax when I'm laying on them.  It is taking some time for Mommy and Daddy to learn how to position me properly, but they are learning fast and my therapists are coming over on Friday to give us some ideas and tips.

Z-Flo

I was a good girl for Mommy last night but it took me forever to finish my last feeding.  I was able to hold down all my food today for Joy until my 5:00 pm feeding, which I started at 4:30.  I ended up spitting up a lot of it and Mommy didn't give me any more since I was having such a rough time.

Mommy talked to Denver Hospice today about getting things to help position me better at night and during the day so I don't get sore or stiff.  Haley went to Children's Hospital and picked me up some Z-Flo positioners that are sooooo cozy and soft.  They mold to my body and keep me so secure and snuggled.  I tried it out this afternoon after Mommy got home but was having such a rough time she didn't want to mess with me too much.

I will get to try it tonight for real and we are hoping it will be super comfortable and I will sleep peacefully all night...fingers crossed!

Hurry-Cane

I had a restful night last night and was pretty calm this morning for Mommy and Daddy.  While I ate my breakfast, Mommy and Brody put together a new train track configuration for Brody to play with.

Daddy and I were catching up on the morning news to see what had happened with Hurry-cane Irene.  Luckily the impact on New York/New Jersey wasn't as bad as predicted.  We gave my Nana's and Pop-Pop's a call and everything was a-ok back east.

I spent most the morning and afternoon with Mommy and was a good girl.  Mommy and Brody went to a neighbors house for a BBQ and, as normal, I started to have my nighttime troubles.  I just finished my last meal and had a few spit-ups.  We may try speeding up my daytime feedings to make sure I am not eating during my difficult times.  Mommy and Daddy work so hard to get the food in me and I just end up bring it back up anyway.  We will try and make some changes this week.

Perfect Angel

I really had a great day today....no spit-ups and I was really calm.  Mommy called me the perfect angel today because I was such a good girl.  This morning I was up hanging out with Mommy while my brother and Daddy went outside to play.  I was up for a half hour or so and couldn't keep my eyes open....Mommy took some video of me while I was drifting off to sleepies.

My respite care provider, Marsha, came over this afternoon so Mommy, Daddy and Brody could hit the town for some fun.  They went to Lakeside Amusement Park in Denver with the neighbors and then out to dinner for some grub.  I wish I could have joined the fun but I just don't do well out of the house so I stayed home with Marsha.

I am sleeping through my last feeding and almost ready for bed.  Hopefully I can keep my "perfect angel" status tonight and tomorrow.

Sleepy

It was another typical Friday here in Denver.  My nurse Ines came over to watch me and of course, I gave her a hard time.  I am not sure what it is, but I always seem to have a rough time.  I spit up after most of my meals with Ines but didn't lose my tube which is a good thing!

I am sitting with Mommy now and was having a tough time but finally settled.  Getting rid of some gas always makes everyone feel better.

Well rested

Mommy and Daddy had the night off again last night so Mommy decided to take a break from the blog.  That, and she didn't get a chance to get a good picture of me:-)  My nurse Paula came again this week to watch me over night so Mommy and Daddy could have a another break.  I had to go on oxygen around 10 pm and didn't get off it until early this morning.  Suctioning wasn't bringing up my stats so oxygen made it easier for me to breath and relax and I had a really good night sleep.

Today was a fairly good day with my nurse Tiffany.  I was pretty sleep and lethargic this morning, but started to get anxious and unable to relax around 10 am so she gave me a warm bath and that helped to calm me down.  I started to get anxious again in the afternoon and was having lots of seizures but it turns out that it was just gas bothering me and I finally went #2.   I felt better for a short time until I realized that I had poop all over me, yuck!  Good thing Tiffany put me in a nice white shirt today...it was so bad, I had to get another bath.  Score.  That really tired me out and I went to sleep in no time.  Even my loud crazy brother running around didn't wake me up.

Daddy got me all ready for bed and I'm working on finishing my last feeding now.











Mommy tried to take a video of me but she didn't quite get it right.  I liked it, so I asked her to add it to the blog.  I am getting so long that I'm going to have to get a new bassinet soon and, as you see in the video, even my changing table is getting a little snug.

Mommy spoke too soon last night.  I was doing so well until my nurse Paula started my last feeding.  My seizure activity increased and I was showing some of my stressed out signs.  It got so bad that I spit up with such force that my tube came up my throat and out of my mouth again.  Paula put it back into place and decided to hold off giving me the rest of my feeding until I calmed down.  She didn't end up finishing it until almost 3pm!  I was wiped out after that and finally fell back asleep.

The rest of my day was pretty quiet.  I just finished up my last feeding with Mommy and was a really good girl:)  I have my pink polka-dot pjs on and I am ready for bed!

Better

Today was a much better day for me.  The old formula made the difference and I was able to keep all my feedings down!  My night nurse Paula is here now and I just started my last feeding.  This is my hardest feeding so fingers crossed that I keep it down!

Well, what started out as a good night turned into a bad one.  I had finished my last meal and Mommy had put me down in my bassinet for "sleepies".  I had trouble settling and was having lots of tonic seizures so Mommy was holding my hand when all of a sudden I spit up a good portion of my 8 pm feeding.  It took me a while to get cleaned up and to fall asleep after that but I was able to finally get some rest.

This morning I was having a hard time again and spit up after my 8 am feeding.  It wasn't too much but enough to start to make Mommy and Daddy worried.  Mommy decided to take a warm bath with me which would help to loosen up some of my mucus.  Mommy laid me on her legs between two warm towels which kept me so snuggly and warm that I fell right asleep which I don't normally do in the bath.  I even stayed asleep after Mommy took me out of the bath for a good 30 minutes so she was able to take some pictures of me.

  















I was able to keep my 11am feeding down but spit up again after my 2pm feeding.  Mommy and Daddy changed my formula about a week ago and Daddy ran out to the store today to switch back to the old kind.  I am drinking mostly Mommy milk still, but we have to add in some formula to keep my calories up.  My 5pm feeding was with my old formula and so far I have kept it down.  Hopefully that was the reason I was spitting up.....

A good day

I really had a good day today.  I was pretty good for Daddy last night and had a calm day today.  I spent most the morning inside with Daddy while Mommy and Brody did some shopping.  Then this afternoon, Mommy cleaned my brothers pool and we had the neighbors over for a swim and pizza or "za" as Daddy likes to call it.

I was a really good girl and slept through most of my meal outside while everyone else enjoyed their "za" and cookies!  I even got some special attention from my little neighbor Jillian.  She loved touching my head and feet and was very interested in me.  I wish I could have sat down in the yard and played with her and eaten chocolate star cookies...

I finished my last meal with very few problems and am now ready for bed with Mommy!  I managed to stay off oxygen all last night and all of today.  Hopefully I don't need it tonight!!

Family and New PJs!

Yesterday Daddy's cousin "Uncle Michael" and his son Michael stopped by for a visit.  They are in town from PA and came over for dinner and to meet me!  We had a wonderful time sitting and talking and I was being a very good girl.  Uncle Michael and Michael read Brody some books before bed so Mommy and Daddy could get me ready for bed and start my 8pm feeding.  

I think Brody was having lots of fun in his room because I could hear lots of laughing!  I was acting pretty calm during my last feeding, but about 20 minutes after it was over I spit what seemed to be the entire feeding up all over Mommy and the couch.  The spit up was so forceful that my tube came out of my tummy and out my mouth.   I was either having lots of seizures and couldn't handle the feeding or was working on spitting up some mucus in my throat and ended up spitting up the milk along with the mucus.  Sometime it is hard to tell since my seizures are not always outward seizures.  Mommy and Daddy took my tube out and I got to sleep without my tube again:-)

I had a really good day today.  My Hospice nurse came by today and I lost a little weight this week.  I've had to stop eating fruit and veggies because they don't go through my small tube.  We are waiting for the new bigger tubes to be delivered.  My new boppy lounger pillow came today which is VERY comfy.  It will be easier for me to lay on my side and my tummy.  It is always a challenge to keep me comfortable so different options for position changes seem to help keep me calm.

Mommy bought Brody and I new pajamas today.  It was the perfect opportunity for some pictures with my brother.  He is very gentle with me and really loves it when Mommy and Daddy let him hold me.  I love it to because it always means lots of kisses:)

Food Change

I had a very tough night with Mommy last night.  I was up off and on throughout the night and needed lots of suctioning and hand holding.  When I'm having seizures or anxiety, I love to have my hand held and it really calms me down.  Around 4am I finally went #2 so Mommy changed my diaper and then I fell asleep in what seemed like a minute.  Mommy then realized that I was probably having gas pain from my new formula that we are adding to my usual "Mommy Milk".

I was so tired from the night, that I slept almost all morning for Tiffany.  She even put me in my bath tub and I immediately fell asleep and I slept right through getting lotioned.

Then we all sat down for another wonderful meal.  So many generous families from my brother's school and Daddy's work have been sending meals home so Mommy and Daddy don't have to worry about cooking.  I have enjoyed all the wonderful flavors and smells of the yummy food and I get more time to spend with Mommy and Daddy when they are not cooking.

I had to go on oxygen tonight and am pretty calm for my last feeding with Daddy.  You can see my pretty blue eyes in this picture.  They are not open often, so Mommy was happy to capture this moment.

Tube Change

My nurse Paula came last night to take care of me so Mommy and Daddy could get some rest.  I think they need at least a week of good night sleeps in order to feel normal again.

I had another rough night during the last hour or so Paula was taking care of me.  I was so stuffed up that the suctioning and my oxygen wasn't helping to bring my oxygen stats up high enough.  We changed positions and made lots of adjustments but nothing seemed to work.  It wasn't until later in the morning that I was able to keep my oxygen stats consistently up high enough and that was because I got a bath.  I really don't like the actual bath, but it helps get moisture in me and relaxes me enough that I am able to clear out all the mucus that has built up over the night.

I was pretty good for my nurse Joy today and Mommy took out my tube after my 5pm feeding since the tape on my face was coming loose.  I started to have problems after that.  I was having more seizures and needed suctioning it seemed like every 10 minutes.  Mommy put a new tube back in and started my 8pm feeding and it didn't go so well.  It seemed like every few minutes I was coughing something up and needed suctioning.  I now have only a few mls left and it has been a very tough fight to get this meal down.

I hope I am able to relax and fall asleep soon and so does Mommy!

Viva 23rd Street!

I had a really great night last night with Mommy and then a very quiet morning.  Daddy took Brody to breakfast so Mommy and I could relax at home and then Mommy took Brody out to Viva the streets!  They closed 23rd street to traffic so Brody got to practice riding his bike and spending time with his friends.  That also meant that I had some nice quiet time at home with my Daddy watching some golf:-)

Then Brody took a really long nap so we had even more quiet time which I love.  I've had a tough late afternoon and evening so far and have been battling trying to cough up some mucus.  Daddy is having to help me out with lots of suctioning.  I am pretty miserable right now.  The goal now is to just keep down my last feeding.

Van Gogh

I had a pretty good night with Daddy last night and slept in until 9am this morning!  Too bad my brother was awake at 7:30...  We had a quiet morning and when Brody woke up from his nap we decided to finally do the finger painting kit that Aunt Eileen and Uncle John bought us.  It was lots of fun and we all got messy and created a pretty painting with our hand prints, including my furry brother Finnegan.  We tried to do my hand print but I have a hard time spreading out my fingers so we used my foot print instead. I have big "flippers" just like my Mommy!

Then my brother Brody decided to go for a dip and clean off!  He now loves jumping into the pool since he went swimming with Pop-Pop Reed last week.  I would have gone in but the water was a little chilly and I can't stand being cold.  Finnegan was worn out from getting his paw print so he decided to take a nap...what a shocker.

I stayed up late with Mommy while Daddy went to a friends party and I am now snoozing in my bassinet.  I am looking forward to some sleepy time.

Bye Bye Nana and Pop-Pop!

I had a really good night last night with Mommy and only needed suctioning a few times and spend the whole night in my bassinet.  Mommy, Nana, Pop-Pop and Brody took a trip to the zoo this morning while I stayed home with my nurse Ines.  I would love to go see some of the animals but quick movements really bother me and I am much more comfortable at home with all my equipment.

We had some sad goodbye's when Nana and Pop-Pop Reed left to go back to NJ.  I was so happy to be able to snuggle with them again and hopefully I will get to see them again soon.

I had a pretty tough afternoon and spent the majority of it trying to cough up some mucus.  I was able to finally get a little up but am still having some discomfort.  I am now resting with Daddy and enjoying my last feeding.

Daddy

I spent the night with Daddy last night since Mommy. Pop-Pop, Nana and Brody went on a short road trip to the royal gorge in Canon City.  I was tough for Daddy, needing lots of suctioning and having drops in my heart rate throughout the night.  I had to go on oxygen again but was off later this morning.

Everyone got home this afternoon and I was so happy to hear their voices.  I even got to hear Brody's voice since he is now feeling better and allowed to be near me.  I got to snuggle with Nana again while Mommy and Pop-Pop took Brody out for a bike ride.  One last snuggle day with Nana and Pop-Pop since they are leaving tomorrow to go back to NJ.  I will be sad to see them go.

Still Quarantined

Well, my brother was still really sick still today so Mommy, Brody, Nana and Pop-Pop spent the day home with me again but we kept Brody in the opposite part of the house.  My night nurse Paula took care of me last night and I gave her a little trouble because my heart rate was really low all night and to top it of, my pulse-ox probe was malfunctioning.  I also was unresponsive when she would pick me up and move me around.  Paula went to get Mommy in the morning to let her know she was worried about me.  We checked my heart rate manually and kept my oxygen on until the new pulse-ox probe was delivered.  Nana stayed with me in the morning so Mommy and Daddy could get a few extra hours sleep.

My day nurse Joy came and was also a little concerned that I wasn't waking up when moved, so we called my Hospice Nurse Lynda who stopped by early to check on me.  She said my heart rate sounded good and my increased dose of Valium had probably just caught up to me.  She was right because a few hours later I woke up and was my normal self:)  My new pulse-ox came and all my stats were doing just fine so we took me off my oxygen and I have been off all afternoon.  The past week I have been having many more outward seizures and we are keeping a close eye on that.

Nana got me ready for bed this evening and I am now resting on Daddy before I go in my bassinet.  It's Mommy's turn to watch me tonight and I can't wait to snuggle with her!

Nana and Pop-Pop!

Nana and Pop-Pop Reed arrived early this morning to spend the week with us while Brody is off school.  It was so nice to hear their voices again since it has been a few months since their last visit.  I had a good day with my nurse Joy.  I was on oxygen most of the morning but was able to get off this afternoon.  Nana finished my 5:00 pm feeding and I was very relaxed and peaceful.

I have had a great evening too but my brother Brody is a different story.  My nurse Paula is here to take care of me tonight and give Mommy and Daddy a break so hopefully my Brother can sleep through the night.  If it isn't one of us it is the other................

Banished

Yes, I was banished to the basement (don't worry, it is finished:-)) to stay away from Brody who is still not feeling that great.  I spent the morning with Mommy and was having a lot more outward seizures than she has seen before.  I had some tough feedings and was able to cough up a bunch of mucus.

I spent the late afternoon with Daddy and had to go on oxygen again.  I finished my last meal and am finally settling down for bed.  Hopefully my Brother sleeps through the night tonight since he was up every few hours last night.  Fingers are still crossed that I don't get sick.

Quarantined

I spent the morning with my sitter Marsha while Daddy got some work done and Mommy and Brody went shopping.  When they got home Brody still didn't feel good and had a fever.

So in order to keep me from getting sick, I have been quarantined to Mommy and Daddy's room!  I've been off and on oxygen all day and have had some pretty big spit-ups.  My heart rate was a little high this afternoon so Mommy and Daddy are now worried that I am going to get sick too.  They are using lot of hand sanitizer and keeping their fingers crossed.

Hopefully my brother wakes up feeling better tomorrow and I stay healthy.  I am sleeping peacefully in my bassinet now after a big spit-up.  I still haven't had my 8pm feeding yet since I had so much trouble with my 5pm feeding.  Mommy is probably going to start it soon and take it slow.

More Valium

We had a busy house yesterday so Mommy didn't get a chance to help me with my blog post.  The Dr. increased my dose of Valium to 3.5 mls every 6 hours to see if it helps with my seizures and anxiety.  Then my brother came home and wasn't feeling that good so it was just a bit chaotic in the house.  He did read me a story before he had to go to bed but I must say I am getting tired of learning about trucks and would rather read about princesses and dolls.

I was on oxygen again last night and the over the past few days I have needed oxygen for part or all of the night.  I tend to sleep more soundly when I'm not struggling trying to keep my oxygen saturation up so we are probably just going to start to use it every night.  My brother stayed home today with Mommy and I since he woke up with a bad cold.  They went to the doctor while I stayed home with my nurse Ines.

We all got to take a nice long much-needed nap this afternoon.  Brody still isn't feeling that great so we just vegged out on the couch after dinner together.  I love snuggling and relaxing so that was alright with me:)

Agitated

The past few days I have had much more uncomfortable awake time. Even my nurse today, Tiffany noticed I have seemed more agitated and unable to relax.  My hospice nurse Lynda comes again tomorrow and we will probably have to increase my dose of Valium again.

I got to sleep for 6 hours last night without my tube!  Mommy and Daddy put a new one in this morning and it is a 6 french instead of 5 to help get those peaches through the tube and into my tummy without watering them down too much.  Mommy made another batch of peaches and I even got to taste a little on my tongue.  I don't like anything in my mouth but I did make a few funny sounds when Daddy rubbed a little bit of peaches on my lips.  A few more days of peaches and then I will move on to a vegetable.  I told Mommy I would like carrots but we will see what she surprises me with:)

I took my last feeding pretty well and am now getting really sleepy.  Fingers crossed that tonight is a good night for me!

Head Rub?

I have one eye open in that picture because Mommy stopped rubbing my head to take the photo.  I was having a hard time when Mommy and Brody got home this afternoon.  Mommy started rubbing my head which I usually love and it helped me calm down instantly.  The problem was I wouldn't let her stop:-)

Today my nurse was having trouble getting my peaches down my tube so we are going to take out my tube tonight after my midnight dose of Valium and let me sleep for a while without my tube...yay!  Them Mommy and Daddy will put in the larger tube before my 6am dose of Valium.  I love being able to sleep without my tube in and can't wait.

I gained a few ounces

I was able to sleep in my bassinet last night but still had some trouble with my oxygen stats and needed to be suctioned a few times.  The good news was that I didn't need oxygen:)

I had a great day with my nurse Joy today and enjoyed more yummy Colorado peaches.  My Hospice nurse Lynda came to check on me and I now weigh 13 lbs 2.5 oz!  I am gaining weight really slowly but not losing any weight which is a good thing.

Everyone got home tonight and I was able to sleep while Mommy, Daddy and Brody enjoyed a yummy veggie lasagna made by a family at Brody's montessori school.  All the families and staff at the school have been so supportive the past few months and so generous by organizing meals twice a week for us.  This is very helpful to Mommy and Daddy since someone has to be with me almost all the time and things are very busy when they get home.

My nurse Paula is here to take care of me tonight so Mommy and Daddy can get some rest.  I got to spend a little time with Mommy before Paula got here and we took a "self portrait" together.