Hard day

I had a really tough night and today wasn't so great either.  I had seizures for a few straight hours last night and was having lots of spastic movements too.  I had to be suctioned countless times and it never lasted long.

Today was a lot of the same thing.  Marsha came again this morning so Daddy could get chores done.  She will be coming each morning this week to hold me:-)  After dinner Daddy tried giving me hydrocyamine sulfate drops in my mouth to see if that would clear up my congestion and it seemed to help a little.  I was able to fall asleep and relax.   I have one more feeding to go and hopefully it is a good one!

Happy Memorial Day

I had a better night sleep last night.  I was able to clear my throat and cough up a bunch of stuff before bed.   My valium seemed to work and I was able to relax and fall asleep around midnight.  I slept until 8:30 or so this morning but then woke up during my feeding and got sick again.  I had a lot of mucus in my throat and spit it up along with most of my milk.  I spit up with such force that my feeding tube came out of my nose.  I lost my breath a few times but Mommy and Daddy used the suction to help clear me out and I didn't need any oxygen.

We had a pretty relaxing day today.  We spent most of the morning outside enjoying the wonderful weather.  Mommy laid me in the grass and since my tube came out she took the opportunity to take some pictures of me without my tube while my brother and Daddy played in the yard.

It got really windy this afternoon so we had to move our BBQ inside:(  We still had a yummy dinner and now I am enjoying some chill-out time with Daddy before the work week begins again.  We hope to get all my nursing set up this week before Daddy had to go back to work!

BBQ

I had a pretty rough night last night.  I was trying to cough up some stuff in my throat during my last feeding of the day and ended up spitting up a bunch of stuff along with lots of my milk.  Mommy and Daddy had to suction me a few times and I was having lots of seizures and spasms.  I fell asleep for a little while and then woke up with seizures again.  Mommy ended up holding me next to her all night and I just couldn't close my eyes until early in the morning.  I had trouble with my feeding this morning too and ended up spitting up a lot of my breakfast.

After nap time we all went over our neighbors Meg, Jeb and Ajax's house for a yummy dinner.  It was a nice night and we had a great time - thanks guys:-)  I don't get out of my house much so it was a real treat.  Big brother Brody also had a wonderful time playing with his buddy Ajax.  He had so much fine that he cried all the way home because he didn't want to leave...

Hopefully I have a better night sleep tonight!!

Sweets!!

I was finally able to get a good night sleep last night!    My brother was up early but I got to sleep in until about 10:30:)  I spent a lot of time outside today-my brother had some neighborhood friends over to play so I got to hang out in the sunshine.  

It got cloudy this afternoon but we all went for a walk outside and ended up at the local bakery to get some treats.  Mommy had a peanut butter cookie that I will get to enjoy later tonight:)

I've had a few bad spit up episodes today.  I tend to feel miserable until I can finally cough everything up and then it is like night and day - I am able to relax and get some rest.  That is what I am doing now.  I should finish my last meal in the next few minutes and will then go snuggle with Mommy and Daddy!  Good night!

Short one

This will be a short post because I am pooped!  My nurse Linda visited this morning.  I only gained 0.02 kg this past week which isn't much but Linda said that is better than losing weight!  Then my therapist Neala stopped by.  We did some stretching and movements and then we decided to try out my car seat again to see if I would tolerate it.  I sat in it for a few minutes but started to get a little nervous so Mommy took me out.

I had a pretty tough afternoon with my congestion.  I have been able to cough up a bunch of stuff but my seizures seem to start up and just cause more congestion....and the valium doesn't seem to be helping this evening either.  Mommy and Daddy gave me an extra dose of Ativan and I don't think it made any difference.  Daddy is having to use the suction machine to help keep me comfortable.

Hopefully I can get some sleep tonight.  I am looking forward to the long weekend with my family!

Help has arrived!

This morning Marsha came to hang out with me.  She sat with me and fed me while Daddy took Brody to school.  Then Daddy made some phone calls and did some stuff around the house including taking a shower which is hard for him to fit in each day!  She will be coming back again next week to help out:)

We are still working on getting me a full time nurse and hopefully will get to meet some next week:)  My therapist was supposed to come today but had to reschedule for tomorrow.  I had some free time this afternoon with Daddy and he took some pictures of Finnegan and I.  Finny was cuddling up with my pink doggy - I think he thought she was cute!

Then Mommy and Brody came home and we all played outside for a while.  It was pretty warm today but it is really going to be nice the next few days and I can't wait to spend more time outside.  Then we all sat down to watch the finale of American Idol (my brother LOVES it...).  I'm still mad that Haley got kicked off so I decided to sleep on Mommy instead of watching the country singers which I found to be a bit boring!

We have help!

I feel like a broken record, but I had a pretty awful night last night.  I went to bed fairly early with Mommy and Daddy but woke up around 1am feeling very anxious and having lots of seizures.  That continued off and on until 5 or 6am.  Mommy and Daddy had to suction me a few times and tried to constantly change my position but nothing seemed to work.  They gave me Ativan every hour for a few hours and I was still having a really hard time.

Today Daddy and Mommy met with a few women who want to help take care of me.  We met Marsha and knew she would be the perfect fit:)  She is coming tomorrow morning to learn the ropes and help give Daddy some time to take Brody to school, run errands and do chores around the house.  I will try not to be too hard on her...

No new news from the nursing agencies.  They are still trying to find a full time nurse or two that will help take care of me once Daddy goes back to work.

Then my doctor and nurse came by to check on me.  Daddy told them all the trouble we have had the past few days and I am now going to get Valium every 6 hours instead of Ativan as needed.  The doctor doesn't think Ativan is working anymore.  We will see if this helps.

Mommy and Brody came home and we all ate dinner together.  Then we got to Skype Nana and Pop Pop Reed which was lots of fun.

After Brody went to bed Mommy gave me a warm bath.  After the bath I got all snuggly in my favorite bunny towel.  Mommy massaged me with my favorite Calendula lotion and I am now ready for a good night sleep!

Bye Bye Nana!

I was able to sleep through most of last night.  I did wake up again around 2am but Daddy gave me some Ativan and I was able to go back to sleep.  I am still really congested and am having some bad seizure episodes that wake me up.  Sometimes I can fall back asleep but other times the seizures keep me up for a while.  It seems like Mommy and Daddy are always giving me medicine to make me feel better.

I was able to snuggle a bunch with Nana this morning before she had to get ready to leave.  When the car pulled up to pick up Nana I was so sad.  Thank you for coming to visit me and for helping Mommy and Daddy take care of me.

We were so busy today that I didn't get a chance to take a picture with Nana so I thought I would share one of us that was taken when I was almost one month old on Valentines Day.  I will miss you Nana...

Don't leave me Nana!

Well I had another rough night last night.  I was awake from about 2am to 4am having seizures and very congested.  Mommy and Daddy had to use the suction machine a bunch of times last night and today.  I got  to spend the morning with Nana while Daddy ran a few errands.  Then my nurse Linda came over.  I am normally really sleepy when Linda comes but today I was having trouble with my congestion and having lots of seizures.

She increased all my doses of medicine and now Mommy and Daddy can give me Ativan every hour on top of my Valium at night if I am really having a hard time.  The doctor will be coming over on Wednesday to check me out.  Daddy also set up some appointments to meet some people who are willing to take care of me in the mornings while Daddy takes Brody to school and gets stuff done around the house.

Today was Nana Reed's last full day with me:-(  I will be sad to see her go but I am trying to get as much snuggle time as possible before she leaves...

It was time for me to eat again after Mommy, Daddy, Nana and Brody finished their dinner and I started out having a really hard time again.  Mommy gave me a nebulizer treatment and that really seemed to help.  I also got a double dose of Ativan and I was able to finish my dinner and I am now sleeping soundly!  Hopefully my extra meds will help me get a good night sleep tonight.

Good night!

Sunday with the Meringers

So I had another rough night on Saturday night.  I am just so congested that it has been really hard for me to sleep all night.  Mommy and Daddy wake up a few times a night to use the suction machine to help clear my nose and throat.  They also gave me a dose of Ativan on top of my Valium and that seemed to help get me back to sleep.

In the afternoon my great Uncle John and great Aunt Marie stopped by to visit me and Nana Reed.  We all hung out and talked and then it finally stopped raining and the sun came out!  So then we all went outside to enjoy the sunshine.

Then after dinner Mommy tried to feed me but I had so much congestion and my seizures were so bad I couldn't finish my milk.  I finally was able to clear my throat after an hour or so and I was totally worn out (and so was Mommy).  We both fell asleep on the couch and Daddy tried to use Mommy's camera to take a picture.  He didn't know how to change the settings and it came out pretty blurry, but I kind of liked it...

Sunshine

It was a beautiful day here in Denver today!  I had a couple rough nights.  Thursday night was pretty tough on all of us.  I was awake and having some bad seizures and congestions.  I had Valium before I went to bed like normal but woke up around 1 am and could not go back to sleep.  I was having seizures and lots of congestion.  Mommy and Daddy suctioned me nose and throat out a few times and when I still couldn't calm down, they decided to give me a half dose of Ativan.  That finally helped and I fell asleep around 4:30 am.

I woke up again last night but Mommy and Daddy snuggled me into bed and I was finally able to calm down.  I didn't wake up again until 9:30 am and even Mommy got to sleep in with me.  I spent a lot of time outside today with everyone.  Mommy and Nana did some yard work while my brother Brody played in his sandbox.  It was a beautiful day today and hopefully it is even nicer tomorrow.

Social Butterfly

I was a social butterfly today.  I had a pretty good morning today which was change from the last few days.  I only had a few episodes of coughing and scared Nana for a second when I had trouble getting my breath after coughing.  Later in the morning my nurse Linda came and I now weigh 11 lbs 8 oz!  My lungs still sounded congested but I am still able to cough most of the congestion up.

Then the nursing coordinator came over to meet me and asses my needs for when Daddy goes back to work.  She was very nice and said she had a few prospects for nurses.  Hopefully I get to meet some of them in the next few weeks.

We barely had time for lunch and then my therapists came.  We did some physical therapy and I was very calm while Siobhan worked my arms and legs.  They also they gave us a DVD to watch for more massage techniques - can't wait to try those out!

After they left I was so worn out and have been sleeping every since.  Hopefully I can still sleep tonight.  Good night everyone.

Happy Birthday to Me

I am 4 months old today!  I had a tough morning with lots of trouble during my feedings.  I got to snuggle most of this morning with Nana and she had trouble feeding me because I kept spitting up and trying to cough up stuff to clear my throat.  The past couple of days my mornings have been much more difficult than my nights.

It is still raining and chilly here in Denver so I haven't gotten to go outside in a few days.  The forecast tomorrow doesn't look good either, but hopefully I get to sit in the sun with Nana this weekend.

Mommy and Brody brought me home a cake to celebrate my 4 month birthday!  It was a yummy chocolate cake that I will get to taste later:)  Mommy, Daddy, Brody and Nana all sang Happy Birthday to me.

Sleepy Girl!

I had a pretty active day this morning.  Nana held me lots this morning so Daddy could get some stuff done.  He is trying to get a nurse lined up to come and take care of me so he can go back to work in mid-June.  A nursing agency is coming to do an assessment on Thursday.  I hope my new nurse will like snuggling:)

I seemed to be having lots of seizures this morning and I think it really wore me out.  I normally love to be held this time of night but I have been sleeping by myself since Mommy got home and I don't want to move.  We are all tired so I am looking forward to going to bed soon.  Goodnight!

The sun is back!

I've had some pretty good night sleeps recently.  I no longer use my boppy but I am still sleeping in Mommy and Daddy's bed.  It just makes me feel good to have them close by and they are right there if I need them.  I have been sleeping in late the past few days too which is nice:)

My Hospice nurse Linda came today.  She said my lungs sounded pretty clear and we didn't have to make any changes to my medicines.  I have been awake a lot today and enjoying lots of snuggle time with Daddy and Nana.  Nana even watched me so Daddy could go and have lunch downtown with Mommy.  My seizures are making me have some more spasms these days and most the time I am awake I am having trouble with seizures and struggle to get comfortable.

Then Mommy and Brody got home and we all had dinner together - Mommy fed me while we ate.

The sun was out most the day today but it was still too chilly for me to go outside.  Hopefully it will be nice tomorrow and I can sunbath with Nana.  I think I may get a bath tomorrow too:)

Hope!

It was a rainy dreary day today.  My big brother slept in until 8:30 which was really nice and then Mommy and Nana took Brody shopping while I slept in a bit with Daddy.  Then I was awake for the rest of the morning so Daddy gave me some Ativan to keep me calm.

Then this afternoon I got a package!!  My Mommy's Aunt Mar, my Great Aunt, sent me a beautiful blanket called a prayer blanket made in Hope, NJ.  It is made with squares of material from parishioners from Great Aunt Mar's church and they all said prayers for each square before they were sewn into a blanket.  Then the Priest blessed the blanket.  I love how warm and cuddly the blanket is - and of course the colors are also beautiful.  Thank you Great Aunt Mar!

Tonight I get to hang out with Nana and Mommy while Daddy gets to enjoy a night out with one of his friends.  

Friday the 13th wasn't so bad

Today was a pretty fun day.  Mommy had off today so she got to stay home with me!  My nurse Linda came by to check on me and weight me.  I now weigh 11 lbs and 4 oz:)  I'm not gaining weight at the rate that most doctors would like me to, but she was happy I had gained weight.  I can only get in about 5 feedings a day because I can only handle slow feedings through my feeding tube and I have too many seizures at night to handle eating safely.

So I got to snuggle with Nana a bunch of times today.  This afternoon she fed me.

 Then Nana sat and read a book to Finnegan and he said "read it again Nana!".

After my big brother Brody came home from school, he Mommy and Daddy went to go see a Colorado Rockies baseball game.  That meant I got to have lots more snuggle time with Nana.  I was pretty good for her until around 9pm, when I started to get congested and my seizures got a bit worse.  Luckily Mommy and Daddy were already on their way home from the game.  Now I am resting comfortably on Daddy watching movies!

It wasn't Mommy's Fault!

So Mommy tried to post yesterday but the blogger site was down:(  Something also happened to my post from Wednesday too, so hopefully that comes back soon.

Here is what I wanted to post yesterday (Thursday):

I had a good day today and I was awake much more than yesterday.  Nana and Daddy gave me a nice warm bath this morning.  I was a little anxious during my bath but loved getting “lotioned” by Nana while on my changing table and watching my animal mobile.    A little massage always makes me feel better.

Nana still wouldn’t take a picture with me today.  She said something about not doing her hair….so I guess I will just have to take another picture with Daddy!  Hopefully Nana does her hair tomorrow so I can get a picture with her.

Nana Reed arrives!

I had a busy day today.  Nana Reed arrived this morning to visit me and help Mommy and Daddy.  I got to snuggle with her and she even fed me a few times.

My nurse Linda stopped by and then my doctor came to visit.  I was so sleepy and could not wake up for the doctor.  He got to listen to my lungs when I wasn't making all my grunting noises and said my congestion sounds like it is coming from the back of my throat rather than my lungs which is good news.

I didn't get a picture with Nana today but will hopefully get one tomorrow!

No fever today:)

Today was a pretty quiet day.  I didn't have a fever today which was good.  Daddy dressed me up today instead of the easy one-piece outfit that he really likes dressing me in.  I love my heart t-shirt!

I got to go outside and lay in the grass with Daddy.  I wasn't too sure about the feeling of grass, but it was something different and the sun was really warm and made me feel all snuggly.

My seizures are happening much more often so Mommy and Daddy have been giving me Ativan about 3 times a day to help keep me calm.  I was pretty calm and awake most of the day but started having some trouble again at night.  I was able to finish all of my 7pm feeding, but since then have been spitting up a lot of thick fluid.  It has been making me so upset that I have even cried a few times and as most of you know, I don't cry that often!

Nana Reed arrives tomorrow morning and I can't wait!!  I love snuggling and am so excited to get to snuggle again with Nana.

I have been really sleepy recently.  I slept in my boppy in Mommy and Daddy's bed again last night.  I have been able to sleep longer the past few mornings which lets Daddy get some stuff done around the house before i need to be held.

I got another fever again this morning and Daddy had to give me Tylenol.  The nurse came to visit me just to see how the rest of my weekend went.  She listened to my lungs and can hear congestion through them.  I have been having a hard time getting the congestion out, especially at night.  Mommy and Daddy have had to use the suction machine every few hours to help keep my nose clear.  The nurse will now start coming every other day to check on me.

I am laying on my tummy now with Mommy and she is helping me get some congestion out.  My seizures are definitely worse at night and that is why I have such a hard time handling the congestion.  Hopefully I can calm down soon so I can get some sleep.

Happy Mothers Day!

Happy Mothers day to all the Mommy’s out there!  Mommy would like to thank her Mommy for bringing her into this world and teaching her how to be such a great Mommy!  Mommy would also like to thank Nana Shea for giving us Daddy and making him the best Daddy in the whole world.

I would also like to thank Nana Reed and Nana Shea for coming to visit me and helping take such wonderful care of me. I enjoy every second I get to spend with you!  You are both the best Nana’s any granddaughter could ask for.

Mommy said from now on she is going to cherish every Mother’s day as a celebration of the fact that she can be a Mother.  Not everyone gets that chance and she is so grateful that she and Daddy have Brody and I here with them today.

So we are all going to spend the day together snuggling and relaxing as a family!  Oh, and Daddy is going to go grocery shopping for Mommy too…and maybe do some laundry.

Here are some fun pictures to enjoy!