Peaches

I had a pretty rough night last night.  I started out in my bassinet but couldn't get calm so Mommy held me in her arms all night.  I woke up a few times with twitches and she would hold me tighter which just helps calm me down so I can fall back asleep.  I had to go on oxygen around 3 am since suctioning wouldn't bring my oxygen levels up high enough.  I was able to get off the oxygen by mid morning.

The Maillet's came over to hang out and swim in the pool today.  Brody had so much fun hanging out with Jackson and Grace.  I also got to thank Grace 1st hand for letting me borrow lots of her cute outfits....I have to thank her for my stylish clothes:)  Then we all enjoyed a yummy lunch that Nickie made us and then it was time for a nap!!

Mommy went grocery shopping and came back with fresh Colorado peaches.  She steamed some up and I had my first taste today.  She watered them down just enough so they would fit through my tube.  Maybe later in the week I can get a taste on my tongue.

Then we all went outside for one last swim.  I stayed dry since I didn't want to get my new pretty dress wet that Aunt Eileen picked out for me:)  We all enjoyed dinner out on the patio until it was time to go inside and get ready for bed.

I was pretty gunky when we got inside and was able to cough up a lot of mucus during my last feeding.  Hopefully that means I will have a calm evening and get some rest.  I'm sure Daddy will appreciate that since he is on duty tonight!

My nights seem to be more difficult than last week.  My stats were all over the place again last night and I kept setting off my alarms.  Daddy would suction me and that seemed to help for a while but shortly after, the oxygen alarms would go off again.  

Marsha came to watch me this morning and my brother Brody went to play at his friend Moses's house.  This afternoon I sat outside with Mommy and did my joint compressions for a while why Daddy cooked dinner.  I am wearing my pretty new outfit that the CA-Shea's bought me and I love it...thanks Aunt Eileen for picking out such adorable clothes.

I've had a tough few hours before bed which is why this post is so late.  Mommy put me in my bassinet around 9:30 for bed and started my last feeding.  I was having lots of trouble relaxing and needed suctioning constantly.  I just now calmed down and was able to fall asleep.  I am finishing my last ounce of food - this feeding has taken forever.

Improvement Day

For some reason Friday seems to be my most difficult day of the week.  Last night I couldn't keep up my O2 saturation so I had to go back on oxygen:-(  Mommy tried to take it off a few times and my stats just kept dropping.  I also started developing a fever which meant that my heart rate started increasing too.  By the time my nurse came this morning my fever and heart rate were pretty high so we decided to give me some tylenol which slowly helped.

I thought it was going to be another tough Friday for me but I was able to get off oxygen before noon and was very calm and relaxed the rest of day!  My nurse Ines was happy since I usually give her a tough time on Friday.  Lynda, the Hospice nurse stopped by to check on me and make sure all the medication dosages are working.  The increase in Valium is making a big difference and I am much more relaxed with less outward seizure activity.

Mommy, Daddy and Brody got home and we had our second night of yummy enchiladas that the Versaw's made for us this week.  Then we all enjoyed a nice walk outside while Brody practiced riding his bike.

I am getting so long that my outfit that Susan just bought me is getting too tight:(  I am still really skinny since I have trouble eating when I'm having seizures and am just under 13 lbs.  The nurse gave Mommy some good recipes for making a high calorie formula to add to my "Mommy Milk" that we may try this week.

Oxygen Returns

I was pretty good last night.  Daddy gave me Hyocyamine before bed and we think that dried me up so much that I couldn't cough anything out and when Daddy suctioned me, he couldn't get anything out.  So my oxygen levels dropped so low and suctioning didn't help so I had to go on oxygen.

I was off and on the oxygen all day until I finally coughed out a lot of mucus and I was able to stop the oxygen!  I have been breathing on my own since and am just relaxing while I digest my last meal.  I am in my pj's and ready for bed soon!

Pooped!

Well, I did twice today, but that is not what I meant!  I meant that I am tired from such a fun few days with Aunt Caryn.  She was so nice to help me with the blog yesterday and even taught me some new words :-)  Here is a picture Aunt Caryn took while she was feeding me last night.

I had a pretty good night last night with Mommy, or "Ma" as Aunt Caryn taught me.  Mommy gave me a dose of Hyocyamine before bed and it really kept my secretions down which can keep me awake at night.  I started out sleeping in my bassinet, but my arching got so bad that Mommy brought me in bed with her.  That always seems to help me calm down instantly.  It makes me feel so secure when I open my eyes and can see their faces right in front of me and can hold their hand all night long.

With all the excitement from our visitors, I totally forgot to thank the CA-Shea's for my adorable outfits and hand-printing kit!  I love "ruffle butt" outfits which tend to make me look a little curvier since I am lacking in the booty department.  Mommy and Daddy promised me that we can do the hand printing with Brody this weekend - can't wait!

Mommy and Aunt Caryn went on a photo adventure today to take pictures of scenery from our beautiful state!  Here are three of my favorites:

It was so nice to see you again Aunt Caryn & Uncle Cayce.  Thank you for visiting me and make sure you come back soon!

Party of the Year!

Ma and Pa's friends Caryn and Cayce drove in from Texas Sunday night and came by last night to see me - and to stay with me for a couple of days!  Since they're from Texas, they like it when I call Mommy "Ma" and Daddy "Pa".  Ma's nurse was here last night so Ma, Pa, Uncle Cayce and Aunt Caryn spent some time together getting caught up!

Brody was excited to wake up to new visitors in the house and so Aunt Caryn snapped a pic of the boys hanging out (before Pa had to go to work and Uncle Cayce had to leave).

Ma and Aunt Caryn took my brother Brody to school while my nurse, Joy, stayed home with me.  Ma was excited because she took today off from work so she and her friend could spend some fun time together.  Little did she know that the sweaty yoga class they went to would leave her legs almost too sore to hold me later that evening!  Fortunately, she looked cute in her new Lululemon gear that Aunt Caryn introduced her to - so it made the pain more bearable.

When Pa got home from work that afternoon, Aunt Caryn snuggled with me and fed me while I slept peacefully.  Pa went out with his friend, Jerry, so it was me and brothers Brody and Finn hanging with the girls!  After my brother went to bed, I was a little fidgety while snuggling with Ma, but started to relax later in the evening.  I did get a pic with Aunt Caryn and bro Bro earlier in the evening.

I'm excited because Ma has another day off from work tomorrow which means more girl time!

A hot one

My sitter Marsha came to take care of me this morning so Mommy and Daddy could get out with Brody.  It is too difficult for me to travel in the car since fast movement makes me upset so I would much rather snuggle at home!  I had a big spit up this morning which cleaned out a lot of mucus and really made me feel better.  I felt so great that I took a nice long nap!

I snuggled with Daddy this afternoon while Mommy took a nice nap.  Then Mommy and I sat outside in the sun for a little bit (Picture).  I still have a red mark on my cheek from my tube but hopefully that will be gone soon.

Happy Birthday Mommy!

We celebrated Mommy's birthday yesterday so she decided to take the night off from helping me with the blog.  Mommy and Daddy changed my feeding tube last night.  The only part of that I don't like s taking off the tape.  Sometimes it makes me so sad that I even cry:-(  Here I am without my tube and Daddy is getting ready to put a new one back in....

Today Uncle John and Aunt Marie came to visit for Mommy's birthday.  They stayed home to watch Brody and I so Mommy and Daddy could go out to lunch together.  I tried not to give them any trouble and we had a good afternoon together.  When Mommy and Daddy got home we cleaned up Brody's pool and he was able to splash around in it before dinner.  I stayed inside with Daddy because it was too hot out for me.  Then we enjoyed a yummy dinner and cake and all sang Happy Birthday to Mommy.   Overall, I had a great day and I am laying on the couch with Daddy now.  It's Mommy turn to watch me tonight and I will try and be a good girl!

Short and Sweet

Good night to all!  Mommy just got me in my jammies and we were all snuggled in and I just had a big poop...Mommy is scared to look!

Worn Out

I had a really good day with Tiffany today.  My therapists Siobhan and Neala stopped by to teach Tiffany how to do joint compressions to give my joints a little workout.  I was sleeping when they arrived and pretty much slept right through the therapy session, but I think it wore me out because I have been really sleepy the rest of the day.  Tomorrow we are going to watch the baby massage video together and hopefully I will get a little massage.  We have been enjoying more yummy meals from all of Daddy's co-workers at Tetra Tech!  Thank you all for the super yummy dishes the last few weeks.

I was running a little fever this afternoon but it is gone now.  I am all done with my last feeding of the night and I am going to be hitting the sack soon.

My night nurse Paula is off tonight and will only be working every other Wednesday.  We are working on getting another Wednesday nurse and someone on Friday or Saturday night....

My increased dose of Valium seems to be doing the trick.  I have been much calmer the last few days and having easier nights.

Happy 6th Month Birthday!

I am 6 months old today....Happy Birthday to me:-)   The bakery was closed so we celebrated with chocolate donuts instead, yummy.  I have been having a tough time the last week so we increased my Valium dose to 3mls every 6 hours.  The nurse said I am already above my maximum dose for my weight (12 lbs) but we can increase a little bit more to get me to a point where I am comfortable.  My nurse Paula is here tonight so Mommy and Daddy can enjoy a good night of sleep.  She is not going to be able to come this Wednesday but will be back next week.  We are still trying to get another night nurse to help on Friday or Saturday night.

Party Time.

I had a quieter night with Mommy last night.  We slept a little later today too since Brody was up late with Mommy at the baseball game.  This morning we went to the neighbors to celebrate Jillian's 1st birthday.  I had a tough morning trying to get rid of some congestion but was finally able to get it out and fell asleep so Mommy and Daddy decided to take me with them just for a little while.  I stayed for about an hour and then left with Daddy so I could be home to eat my lunch.

I was having a hard time this afternoon and Mommy gave me hyocyamine again and it finally worked because I was able to cough up a bunch of congestion and I am sleeping now.  Lets hope tonight is easier for me.

Saturday

I had a tough night with my Daddy last night.  I was awake a lot and needed to be suctioned every hour or so despite getting to sleep in between Mommy and Daddy.  I had a quiet morning with Mommy while Daddy took Brody out shopping for shoes and groceries (not in the same store:-)  I spent most of my morning trying to cough up some mucous and was having lots of seizures.  I finally settled down in the afternoon after Mommy gave me some hyocyamine.

I spent the afternoon/evening with Daddy while Mommy took Brody to the baseball game - go Rockies!

I've been having a harder time with seizures and managing my secretions when I am awake the past few weeks.  I feel most comfortable laying on my tummy so I can easily get stuff out of my mouth and not feel like I am choking.  I also like that pressure of laying on my tummy when I am having lots of seizures.  Mommy and Daddy may want me to try a new drug to help keep me calm but that is also going to mean I will sleep much more than I already do.  We will talk about it with my Hospice nurse Lynda next week.

Sleepytime!

I had a great night sleep on Thursday.  I fell asleep on Mommy around 9pm and we woke up at midnight.  Mommy tried to put me in my bassinet but I kept having seizures so she let me sleep in bed with her.....after that I had a peaceful night and didn't need to be suctioned at all!  I guess I will be able to sleep in bed with mommy and daddy more often.

I had a rough day with my Nurse Ines today.  I was on oxygen most of the day and needed lots of suctioning.  That didn't really change once Mommy and Daddy got home.  I had a rough 5pm feeding and finally fell asleep on Daddy a little while ago.  I don't think I will be able to take my 8pm feeding tonight so I may just skip it and hit the sack.

Hailstorm

Nothing new to report today except our crazy weather.  I was pretty good for my nurse Tiffany today.  She gave me a bath which I slept through most of....

Daddy came home early today so he finished up my 5pm feeding and I was able to cough a bunch of mucous up which really made me feel better.  I was then able to relax and sleep while Mommy, Daddy and Brody had dinner.  That is when this HUGE hail storm started.  Mommy and Brody took lots of pictures and I was so tired that was able to sleep through it.  I did hear it since it was really loud.

Paula is here again tonight to take care of me.  I am having a tough time with my last feeding and needing to be suctioned out a bunch.  Mommy and Daddy are so thankful to have Paula here at night to help two days a week.  We are still looking for one more nurse to help out with either Friday or Saturday night.  Hopefully we get someone soon, but just two nights is a treat for Mommy and Daddy.

Dreams

Well, we all got a great sleep last night so everyone was catching up on their dreams:-)  I had a pretty easy night with Paula and she didn't have to suction me at all after about 2:30am....go figure I am a perfect angel when Mommy and Daddy are not around.

I also had a really good day with my nurse Joy today.  I slept most of the day and only had a little bit of a tough time this evening.  As usual, evenings are usually my worst time and when I am awake, I am constantly having seizures and trying to manage my secretions.

It is Daddy's turn to watch me tonight so hopefully I have as great a night as I did last night!

Who's gonna get a good night sleep?

Mommy and Daddy!!!  Our nurse Paula has offered to come help take care of me Monday and Wednesday nights:-)  Tonight is her first night with me and I am just finishing up my last feeding of the day.  I had a tough day today with Joy and was awake most of the day with seizures and having to be suctioned every half hour or so.  She tried giving me Ativan and Hyocyamine on top of my normal dose of Valium and they both didn't seem to help much.   Mommy had to suction me every 10 minutes or so after my 6pm feeding and I am just settling down now for Paula.

I got some snuggle time with Daddy and Brody before Paula got here...

Funday Sunday

It was a busy day today at the house.  I spent the morning outside enjoying the warm sunny weather.  My brother was playing in his pool and the neighbor Caleb came over to swim with his Daddy and then Abby and Zach stopped by with their Mommy and Daddy.  We were having lots of fun and then to top it off Ajax and Jillian along with their Mommy stopped by for a quick swim.  It was so nice to see all the kids playing!  I even got some snuggle time with Chris:-)

After all the excitement I was so tired that I fell right asleep in Mommy and Daddy's bed and stayed there until dinner time.  Daddy is giving me my last feeding now and I am awake and having seizures.  I hope I can relax soon so we can all get ready for bed.

Tooth

Yup, that is right, I am getting my first tooth.  Mommy took some pictures an in one you can kind of see my one top tooth coming in.  This explains all the phantom fevers and extra drool we have been dealing with recently.

Good day and night

I had a really awesome day with my nurse Ines yesterday.  Mommy and Brody were home in the afternoon so we also got to spend some time together.  My therapists Siobhan and Neala came to visit and showed Mommy and Ines how to do joint compressions on me since I am not doing that on my own.  They also gave Mommy some suggestions on how to create a comfortable bed for me.  It must have worked because I slept really well last night!  Mommy switched me from side lying to my tummy around 1am and I only needed to be suctioned once after that!

Today Marsha is coming to take care of me in the morning so Mommy and Daddy can take Brody to a birthday party.  I got my tube changed early this morning and am now sleeping peacefully in Mommy and Daddy's bed. 

Water Day!

I had a pretty good night last night even though I was up every few hours needing to be suctioned.  I had to go on oxygen around 2:30 am because I couldn't keep my oxygen above 85% with suctioning alone.  I was easy on my nurse Tiffany today by being pretty calm most of the day and sleeping a lot.  We had a huge storm late this afternoon which made Mommy late getting home.  It was raining about 12"/ every 30 minutes and there was lots of flooding around Brody's school so Mommy didn't get home until 6 or so.  I just finished my last meal of the night and now Daddy is holding me.  Bedtime is just around the corner:)

Ready for Bed

I was up off and on again last night having to be suctioned every few hours but didn't need any oxygen.  Daddy took care of me last night so it is Mommy's turn tonight.  My hospice nurse Lynda stopped by today and weighed me.  I gained two ounces which isn't very much but better than losing weight!  My nurse Tiffany stayed with me today and I even got a bath.  I am now all done with my last feeding and sound asleep in my bassinet.  Mommy made it all snuggly and soft for me and I am starting to get used to sleeping in it.  As you can see from this picture, I am getting very long so I'm not sure how much longer I will fit in it....

Worn Out

I think I am starting to wear Mommy and Daddy out at night.  They have been taking turns with me at night and I am needing to be suctioned out every hour or two throughout the night.  We have gone a while like this and I think they are going to start having a nurse come at night to take care of me a few nights a week.  We have to put a request in to the nursing company and it may take a few weeks for the nurses to become available.

I had a pretty good day today with Joy.  I didn't need any oxygen during the day and tolerated all my feedings.  I was able to sit with my brother for a few minutes this afternoon and play with some of his cars. He loves showing me his different toys....especially his cars.

Happy 4th of July!

I am sitting here with my Daddy and listening to the fireworks-Happy 4th of July everyone.  Today was a hot one here in Denver.  Mommy, Daddy and Brody ran lots of errands today while I stayed home with my nurse Joy.  I had a pretty good day today.  I was really worn out and slept a lot today since I was having lots of seizures and awake time yesterday.  I slept with oxygen again last night.  Daddy was having to suction me out every hour or so to keep my oxygen saturation up, so he decided about half-way through the night just to put me on oxygen.  Then he could get a few consecutive hours of sleep in between having to suction me out.  Tonight is Mommy's turn:)

No pictures today - sorry.  Mommy, Daddy and Brody were going to bring me over the neighbors house for a BBQ, but I ended up having to stay home because I was having my normal difficult evening.   Mommy even dressed me in my pretty picnic outfit....oh well, I will just have to wear it out another day.

Lazy Sunday

I had a pretty mellow day today.  My stats kept dropping again last night so Mommy had me on oxygen but I was able to get off it this morning.  I spent a lot of time outside today watching my brother play in his pool.  I hung out with Mommy on the porch while Daddy and Brody played in the water.

I have maintained my temp all day but still need to be suctioned out every half hour or so, especially when I am having spasms.  Hopefully I can get through the night without oxygen...

The oxygen returns

I had another pretty tough night last night and ended up on oxygen again.  All my stats just kept dropping so Mommy and Daddy decided to put me on oxygen.  That seemed to do the trick and I slept in much longer stretches.  I woke up this morning with a fever again along with an increase heart rate so my nurse Ines gave me Tylenol and that seemed to do the trick.  I had to stay on oxygen all day.

My Hospice nurse Lynda stopped by this afternoon.  She weighed me and I didn't gain any weight again.  I seem to only gain weight every other week...

Mommy re-did my bed so it is super comfy tonight.  Hopefully that means that I sleep very soundly!  She was also able to take me off my oxygen.  I am sleeping comfortably without oxygen right now and I am hoping to last all night just like this.