My 10th Month: January 4th to present...

Well, today I am 9 months old, so I start on my tenth month on this earth.  It was an okay kind of day.  I pulled 2 "funny" things on Mommy.  I needed suctioning and a little O2 to feel better.  Not sure why I got chokey, but I did.  I get the last dose of my medicine today.  Yay.  Maybe I won't poop so much and Mommy won't have to call me "Red Butt" anymore.

January 5:  A doggie came over from next door.  I was scared.  He liked my face and toes!  I did really well on bipap last night.  It felt good.  I was on it two times for about 3 hours each.   I didn't want to take a nap today.  Finally, I fell asleep in my Daddy's arms, rocking in our chair.  I had 2 bad times today.  All of a sudden I got choked up and my SATs dropped.  Mommy and Nurse Julie suctioned me and gave me a bit of oxygen.   I smiled at them as soon as I came back up.  I had a good time on bipap this evening.  I was talking and blowing bubbles.  Aunt Chris and Mommy took turns holding my hand so I stayed happy.

January 6-8:  Pretty normal days, not necessarily boring, but not much going on.  I did really well, not many dips.   Casey and I watched some TV together.  I played a lot with my bells and rattles and stuff.  I'm doing well on bipap.  I'm talking more again because I feel better.  Oh, Howie Long was the NFL star that was paired up with a contestant on Wheel of Fortune!  He mentioned SMA and Andrew's Buddies.  Very cool.  The lady didn't win too much money, but what exposure!  Oh, I keep throwing up at night.   It's when I've been on bipap for several hours and I have to poop and all the pressure makes me gag and pushed my food right up my throat and ugh.  What a mess.   I get happy right away after Mommy suctions me and takes off the bipap and changes my poop and repositions me.

January 9:  I had 2 shots this morning.  My RSV and my second flu shot.  They weren't too bad.  Oh, and I gained 1 and a half ounces since last week!  Yeah!  I know weigh 14 pounds 13.5 ounces.  I'm still down at least a pound from my heaviest, but I'm on my way up again.  Then our PT came.  She worked on me and Casey.  She said I was very flexible and had good range.  I was resisting her a lot, that's good!  She brought a PT student with her.  She played with us a lot.  I think she likes us.   I did do one dip for Pam.  She was trying to hold me while she was sitting, having me facing out.  I did okay for a bit, but then I got chokey and my sats dropped to the high 70's for a minute.  I was fine, though.  Then, the lady, Kim came who works on my brother's wheelchair.  She is making me a tiny seating system.   She made the main part and is going to put it on a frame and get it padded.   Eventually it will fit on a Kid Kart...Then I went up to take a nap with Mommy.   Then the RT came when I was all settled on bipap.  But Mommy and Sue messed with me anyway and tried the nasal prongs with me.  I didn't like them.  My SATs didn't stay up very well.  It probably would be okay eventually, but they didn't have a good way to keep them in my nose well.  I'll probably stick with my mask.

January 10:  I did not throw up or poop last night!  I was awake, for some reason, around 2:30 AM.  I was clucking my tongue and trying to get Mommy to play, but she was soooo sleepy.  Finally, I went back to sleep.  Casey finally went back to school today.  My teacher is coming any minute.  I'm not sure what she's going to get out of me, as Mommy could not get me to nap this morning.  Well, Jennifer came and we played a little bit, but I was kind of restless.  Mommy tried to get me to go to sleep in the crib in my room, but I held out until she brought me into her room where I have my toddler bed where I LOVE to sleep.  I did one bad dip today.  This afternoon I was in the kitchen with Mommy and Nurse Julie when all of a sudden my sats dropped and I went quick.  Of course, the suction was still upstairs so Mommy ran for that.  And then she got the oxygen.   I came up pretty quick, but I was pretty blue.  I smiled right after.   Then I got on bipap.  I was perfect.  Mommy and Julie put me on my belly on bipap.  It's the first time I've been on my belly since my g-tube surgery.   For  a couple of seconds I hated it, but once I was settled I stayed that way for quite a while, playing with my bells and watching Oprah with Mommy.

January 11:  I had a good night again.  No pukes.  And, finally, my butt is normal again!  AAAAhhhh.   Today, Lori, my OT came for me and for Casey.  We did some ROM and played with the O'Neill-Mobile.  It's a frame that I can use to play with toys with my arms and it also holds my legs in a sling so that I can move, move, wiggle, wiggle.  Then I had a break and snuggled with Sue, the nurse.  Later, Jennifer came to teach Casey, but she played with me, too.  Casey and I played ball.  Then, Mommy had me and Casey all by herself.  I fell asleep in her arms and then took a nice, long nap on bipap.  Then Daddy came home from work early.  Then Aunt Chris came and played.   Then I took a bath.  Love my bath!  Now I am in my PJs watching TV with everyone.  Good day!

January 12:  I didn't have so great a night.  Neither did Mommy and Daddy.  I was very gassy and did not want my bipap.  I had stuff in my nose and it was bothering me.  I couldn't get comfy and I wanted to be moved around a lot.  In the morning Daddy noticed that my comfort flap for my mask was in the wrong position.  Maybe that's why it didn't feel good.   Right now, 8AM, I am on bipap and feel great, playing with my gym.  The rest of the day was fine.  I finally slept on my bipap for one and a half hours in the afternoon.  Then I played and watched football with my brother.  I rocked with Aunt Chris for a long time.

January 13:  I threw up again during the night.  I hadn't done that for a few days.  Mommy thought she had it beat.   But, I did stay on bipap some.  We all slept in until almost 9 AM.  Mommy had to go downstairs and stay with Casey at 6:30 AM because that was when the nurse was leaving.  I took a bath with my brother today.  Fun!  He washed my hair.   I played with the yellow temperature ducky and a puff.  Then I played and napped and played.  I did one dip today.  It was out of the blue. Daddy suctioned me and gave me some Oxygen and I was fine.  Nurse Sue, Daddy, Mommy, and Aunt Chris took out so many toys to entertain me with today!  Casey's room is a wreck!  I'm watching the Blue's Clues movie.  I think it's funny.

January 14:  Today is my Aunt Chris' birthday!  Casey made her a special card with both our pictures on it.  Mommy and Daddy had a care conference today with the doctor and social worker and case manager and people like that.  The doctor examined me and Casey and said we looked great!   I sat with Daddy for the meeting and was very funny and said "Dadadada" and cooed.  I took a little nap, but I am protesting my afternoon nap.  Casey is zonked out right now.  Casey and I just gave Aunt Chris some flowers.  I gave a bunch of mixed cut flowers and Casey gave her some pink roses.  I think she likes them!  And we had a cake that Casey and I helped make.  Mommy frosted it.   We sang, "Happy birthday to Aunt Chris, Happy birthday to Aunt Chris!"

January 15:  I tried out my swing again and I love it now!  Mommy put some pillows in it so it's more like I'm laying down, so it's really comfy.  I swang and watched TV and then I fell asleep in it!   Later, I tried it again and loved it again.  Mommy hung toys from the side so that I could grab them.  I loved timing myself so that I could get them.  I got pretty good at it!  Casey wennt to school today.  I stayed home with Mommy.   We slept together on the couch.  Oh, it snowed a little today.  It looks really pretty.

January 16:  I got my new MINI button today!  It hurt, but not as much as I thought it would.  We all went to the hospital in the van.  Casey rode in his wheelchair.  I sat in the car bed with my legs crossed because I am so tall.  It's better though because I can lay flat.  I did fine.  Casey and Mommy stayed in the van while Daddy and I went in and had my tube changed.  Daddy said it was much easier than when Casey had his done.   I cried some, and my SATs dipped a little, but not bad.  Then I slept on the way home!

January 17: Well, after waking up at 7 AM on my bipap and spitting up, the day didn't look too promising, but it turned out good.   I was very happy and wide awake all morning.  My speech therapist, Tami, came this morning and we did good stuff.  She has a "squiggle writer" that she put a rubbery nuk brush on and she let me put it in my mounth and chew on it and suck on it while it vibrated.  Mommy couldn't believe that I like it because I am very picky about what I like in my mouth.  Then I played and hung out with Casey while he got ready for school.  Then Mommy and I went upstairs and I finally settled down for a nap.  Mommy tried putting bipap on me before I fell asleep, but I just perked up and started making noises and playing with my spit.  So she took it off and rubbed my hand until I fell asleep.  Then it was okay to put it on me!  The phone rang and woke me so we went and played in my room.  Then we went back to Casey's room and I watched a Baby Mozart video for the first time.  Very entertaining!

January 18:  Well, Mommy said she and Daddy didn't have a good night last night.  I slept thru almost everything.   First, Mommy couldn't get my bipap on good.  It kept saying there was a big leak.  My SATs and heartrate were good though.  She was very frustrated!   Then, I had tons of gas.  The gas was just rolling out from all ends.  I slept thru most of that, too.  Then, the feeding port on my new tube kept popping the feeding line off.  Then, once everything was settled, Mommy and Daddy were wide awake and couldn't sleep!  I woke up promptly at 7AM wanting to be played with.  Mommy tried to sneak us out of bed, but she ended up dropping my SAT monitor and waking Daddy.   I had a pretty good day, playing and napping.  When I woke from my afternoon nap I was grumpy.  My new tube was bugging me. It took me a while to settle down with some Tylenol.  I slept again.  Later, I took a nice tub bath with Casey.   Then I was pretty much ready for bed again.

January 19:  We all slept pretty well last night, but I didn't want my bipap much.  I'd fuss and cry so Mommy had to take it off.  My numbers were good.  Then, I peed thru my diaper so Mommy took my PJs off and stuck me in the bed with her and Daddy for a couple of hours.  This morning I played.  Mommy is trying to get me to like playing on my side, but it's not so easy.  I always fling my arm back so it's more like I'm on my back.

January 20:  I got to go for a ride in the van today, and it wasn't for a doctor's appointment!  Mommy, Daddy, Casey, Nurse Sue and I packed up all of our stuff and we went to WalMart.  I stayed in the van with Daddy while Mom, Nurse Sue and Casey went in.  Then Dad and Casey rolled over to Home Depot.  Then we stopped at Best Buy for a minute.  Then home.   I was a good boy.  I had a little episode in the parking lot at Best Buy, but not too bad.  I slept a lot once we got back home.  I didn't want to miss anything while we were out.  I loved looking out the window watching things race by.   Oh, and I had a nice, nice tubby tonight!

January 21:  Well, I threw up again last night.  I really try to be good on bipap, but it just fills my belly with air and it is soooo uncomfortable.  Mom and Dad will try something different with me tonight.

January 22:  The exciting thing today was going out in the car with Nurse Eliz and Mommy.  Nurse Eliz is one of Casey's nurses who took care of him since the beginning.  Then, a year ago, she started working in the NICU at the hospital on nights.  Now, she's back part-time with Casey and ME!  So, she had the okay from VNA to start learning how to take care of me and to catch up on my brother.  Mommy was brave and decided she wanted to go out shopping with me and Eliz while Casey was at school.

January 23:  Today is Casey's 5th birthday!  I was good for Mom and Dad last night so they could have energy for today.   I slept on bipap from 8 to 10:30 PM and then from 2 AM until 7 AM!  No gas and no pukes!  Daddy stayed home from work today.  He says it's a holiday because it is Casey's birthday.  He did a lot of work from his computer at home.  He watched me a lot so Casey could play games with his PT and PT student and watch movies and stuff without me fussing. 

January 25:  I didn't feel so hot this evening.  Actually, I was playing and having fun and I was blowing bubbles with my spit and all of a sudden I couldn't breathe.  Mommy, Daddy, Aunt Chris and Nurse Nancy R were there and helped me.  Aunt Chris almost called 911, but then Nancy gave me some rescue breaths it dislodged something and then I could get air in again.  I promptly fell asleep after on my bipap and did great.  I woke up happy and clucking my tongue for attention and smiling  big!

January 26:  Wow, what a day!   Casey had his friend party today.  I mostly hung out with Daddy.  The kids had lots of fun and were very excited!  They played in tents and played games like fishing and Pin the Tail on the Critter, and made their own trail mixand had their faces painted.  Then Casey opened his gifts and then everyone had cupcakes.  We were all so tired after everyone left!

January 27:  The Open House party for Casey's birthday was today.  Lots of people came to say Happy Birthday to Casey.   He got lots of balloons and some presents.  Some people donated money to FSMA in honor of Casey's birthday.  I was a good boy.  I liked seeing everyone.  

January 28:  Casey went swimming today.  Mommy and Daddy stayed with me. Daddy was home because the guys came to replace the water heater. 

January 29:  The guy came today to try me on the IN/EX.  I did not like it.  He was nice and all, but I didn't like the way it made me feel.  Later, I got baptised!  Father Holland came to our house to do it.  He knows how hard it is for us all to go out.  He is really retired, but he does lots of things for the church.

January 30:  Happy 8th month birthday, Lily, my girlfriend!

January 31:  Today Daddy stayed home with me, Casey and Mommy.  Nurse Julie had to go to Connecticut for a funeral.   They had no other nurses that could work so Casey and I get Mommy and Daddy!   Tami came for my speech today.  She tried to get me to talk into an amplifier thing while I had headphones on, but every time she put it up to my mouth I was quiet!   We played some and she used the giggle thing on my cheeks and mouth.  Everyone is supposed to try to get me to vocalize when I want something or want more.   Sometimes I really do it.

February 1:  Well, we had a big storm and it's not over yet!  Nancy, Casey's night nurse got out of our driveway after Daddy de-iced her car.  Sue, the day nurse made it in a couple of hours late, but she made it!  Aunt Chris didn't have school.  Almost all the schools were cancelled!  Daddy was going to go to work after Sue got here, but decided to work from home because he was afraid the power might go out.  We have a generator, but Mommy hasn't used it yet and Daddy isn't sure that it would work right.  So, we hung out and played and watched TV.  Aunt Chris was able to come over later because it got really warm out and everything was melting already!

February 2:  Today we had some fun visitors. Casey's new friend, Jane, came over with baby Catherine and their Mommy and Daddy.  Jane brought Casey a birthday present, a cool ball and a Bob the Builder book.  Jane had lots of questions about us.  Like how we got our food and why Casey has tubes and lays down a lot.  She was very gentle with us.  Jane held me and snuggled me good.  She took all of Casey's pillows and put them under him and got him really comfy.  Jane's Mommy read us the Bob the Builder book.  I hope they come back soon.  Oh, Jane is having a birthday soon and we are invited to her party!

February 3:  Happy Super Bowl day!   Casey is excited, I'm not!  I had lots of gas again last night.  But after Daddy vented me two times I slept really well on my bipap.  Maybe it's bananas!   I spent a lot of time with Mommy today in her bedroom.  She put lots of clothes aways and dusted and stuff.  I slept some and played some and talked and giggled.  I feel good!  Tomorrow I will be 10 months old and start my 11th month on this earth!

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What I Like:

being looked at

going to sleep early, like at 7 PM!

wiggling and kicking in my tub

making silly noise while I am on bipap

when Mommy holds me and  throws me up in the air (just a tiny bit, but it feels good!  my arms fly up in the air and it makes me smile)

swinging in my SWING!

What I Don't Like:

Being left alone, even though I know someone is going to be right back

having cloths or blankets put over my head to play peek-a-boo; it's okay if you put them over your head, though


You are listening to:

How Do I Live, by LeAnn Rimes



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