My Twelfth Month:

March 4 through April 3, 2002

March 4:  We all had a bad night.   Daddy has a cold so he was snoring worse than normal.  I had tons of gas.   My belly would get hard, I'd stiffen up and then the gas would burst out into the venting tube, and/or come out my bottom.  It hurts, bad!  I was restless!   Mommy tried turning me a lot and moving me around, but it was still bad.   Mommy got up and then Daddy took my bipap off.  I was awake for a while, happy.  Mommy put bipap on again and I fell asleep for a while.  Then, bad gas again!  Mommy ended up taking off my bipap at around 5AM.  I slept really well for the next couple of hours.  I was kind of grumpy again this morning.   Mommy was worried because whenever she touched or washed my left ear I would cry and hold my breath.  She called the doctor's office and Nurse Peggy and Nurse Madeline came out and checked me all out.  Good report, no bad ears, nose or throat.   I guess I am just a grump!  I slept a couple of times on bipap today and got some good rest.  No gas, either!  I've been pretty good the rest of the day...I just need attention like normal.  Casey and Mommy made orange-chocolate chip biscotti today.  Aunt Chris came over this afternoon and has helped entertain us.  It is COLD here!  Yesterday afternoon it was 60 degrees, a record, and now it's brrrr. 

March 5:  I had a yucky night again.   Grrr. So much gas.  Mommy took my bipap off a couple of times and then I slept better--go figure!  I thought that bipap was supposed to help me sleep!  Daddy still has his cold and snored a lot.  Poor Mommy is exhausted.  We won't have many evening nurses for Casey (I only get nurses sometimes during the day) because Nurse Darla is off to Germany for the month!  I hope Mommy doesn't get too crabby.  I had a good day.   Would have been great, but I had one bad "episode".   Not fun.  I felt awful.  Mommy and Nurse Nancy R took care of me.   Suction, in/ex., O2, suction, in/ex., O2, etc.  I was fine after.  Took two nice naps on bipap.  Once on Mommy and once on Nurse Nancy.  She was really here for Casey, but he wanted to be a TV-Head today and not do much.  He did play with the felt board and scenes that Aunt Peggy gave us.  Mommy felt kind of yucky today so we all ended up having a low-key day.

March 6:  I had a great night!   We all slept better than we have slept for the last couple of months.  Mommy ran my food at 35cc/hour instead of 55cc/hour so my belly didn't hurt so much.  I still had gas and air from the bipap, but it vented out of the tube pretty well.  At 5AM I had one bad bout and Mommy took off my bipap for 5 minutes to calm me down.  It went right back on again and I slept in until 7:45!  I had the best day today, ever!   Mommy will have to tell you later because it's time for bed!  Okay, so Nurse Elizabeth came for me today.  I had fun playing with her and with Mommy.  I napped in my crib on bipap.  I was perfect all day, happy, good numbers, tolerated everything really well.  Mommy and Daddy went out together for just a little while, but at least they got out together!  Grandma and Grandpa O'Neill came over to help Daddy with the taxes.  I only took that one nap but I was soooo soooo good!   Daddy put me on bipap for a little boost, but I didn't really need it.  I went to bed with Mommy early.  I just felt good today!

March 7:  A great day despite a not great night.  I don't know what it is, but I just don't want my bipap when I have so much gas.  I was restless and kept Mommy up a lot.  I was in a good mood all day.  Nurse Elizabeth came for me.  Mommy went out to the Dollar Store and the Drug store for a bit.  Nurse Julie gave Casey a bath without Mommy for the first time ever!  Mommy ALWAYS gives us our baths.  Then Casey went to school and I had my nap.  Jennifer came today.  She brought a special magic wand with lots of streamers hanging from it.  I played with a truck and knocked blocks over with it.   Then she tied some ribbon to my finger and put it around a foam sponge block and stacked up more sponges on top of it and I pulled and knocked stuff over!  I did have one breathing episode when Aunt Chris was holding me.  Not too bad.  Mommy and Nurse Julie in/ex'd me and suctioned me and gave me a bit of O2 and I was fine.

March 8:   Oh, what a night!   I know Mommy said she wanted to throw me out the window, but I couldn't help being grumpy.  I did really good from 8 until midnight and then I did NOT want bipap. Mommy hates for me not to be on it, but it was the only way I would sleep.  There was a big care conference for me and Casey today. The doctor came (I didn't want him to examine me, no way, no way!  He even put on my new, silly head band with glittery stuff on it and I still wouldn't be nice to him!)  and he looked in my ears, and low and behold, I have an ear infection!  And, it's in the ear that Mommy thought I had one!!  So everyone thinks that's why I haven't been liking my bipap this week, because the pressure makes my ears hurt!  So, Mommy has to give me Amoxycillan for 10 days.  She will make sure to give me Tylenol, too.  I didn't like everyone in my house all at once.   I really like these people, but man, there were like 10 of them all goo-ing and   ga-ing over me and I wasn't feeling so great as it was.  I was fussing and crying and Mommy couldn't concentrate (I had no nurse for me today) so she brought me in to Nurse Sue and Casey.  I was pretty good rocking with her, but I got chokey once.  How embarrassing to get that way when everyone was there!  Later I took a nice nap on bipap with Mommy laying on the couch with me.  Then Daddy came home and I hung with him while Mommy and Aunt Chris went and got my medicine.  Today was the 3rd day in a row that Mommy left the house!!  I had a nice tub bath tonight.  Now I'm all snuggly and ready for early bed.  Mommy is too.  I will try, try, try to be good tonight!

March 9:  Well, I did better last night.  But I still got Mommy to take off the bipap for a while.  I was fine.   Today we hung in the morning and then got ready and went outside!  Casey and I were so excited to be outside together!  We swang together on the swing that we got Mommy for her birthday last summer.  Daddy swang some and Mommy swang some.   Nurse Judy did, too.  It was warm, warm, warm!  Probably about 60 or 65   degrees.  It was very windy though.  We think Amy and Lily sent this weather up to us from Kentucky!  Mommy made me wear Casey's "in the hood" hat.  We were sheltered in the swing so it was fine.  I cat napped a bit.   When we came in I took a long nap.  I sat with Aunt Chris and I was very silly!   Tonight we get to have a sleepover in the living room.  There is no nurse for Casey so we are all camping out.  I can't wait!

March 10:  Our sleepover was fun!   For most of the night it was Mommy in the middle and me and Casey on either side.   Daddy spent a lot of the night on the couch.  Mommy tried to get me to sleep at my normal time but I was too excited to sleep.  At 9:00 Daddy turned off the TV and washed Casey up and turned him to face us.  Mommy held both of our hands and told us to go to sleep.  No way!  We both "yelled" and had fun for a long time.  I finally fell asleep, and then Casey did, then Mommy, then Daddy.  I was pretty comfy so I slept well.  I stayed on my bipap all night long!  The medicine and Tylenol really help my ear so I was fine.  In the morning we woke up and we played and had our normal routine.  I rocked with Daddy and Mommy got Casey ready for the day.  I was all up and dressed before Casey and Daddy even got up!   Nurse Sue came for Casey today.  We all played and hung out and Sue ironed for Mommy.  Mommy cleaned and did stuff.  Daddy went out for a bit.  Later on Grandma and Grandpa O'Neill came over for supper.  Daddy decided he wanted a corned beef and cabbage dinner even though St. Patrick's Day isn't for a week.  Of course, Aunt Chris was over, too.  I got a little grumpy because I didn't take much of a nap.   I needed to be held and rocked.  Mommy gave Grandpa one of Casey's big boxes of toys and they played and played.  Finally, Mommy gave me a tub bath and that relaxed me.  Then I wasn't too grumpy anymore, just tired.  I fell asleep at 8:10.

March 11:  Mommy sneaked out of bed this morning really early.  She was up and ready and had gone to the store and back by 8:00.  Daddy and I didn't even know she was gone!   My nurse, Eliz, came at 8AM.  Mommy made her a cheesecake from scratch, complaining the whole time that it used every bowl in the house!  Eliz had her birthday a couple of weeks ago.   Mommy always makes the nurses a cake, but got behind on Eliz.  We had a good day.  Casey and Nurse Julie and a new nurse, Rayann (she was shadowing) brought Casey swimming.  I had Mommy and Eliz to myself.  We played a lot.  Mommy cleaned/organized while I napped in my crib, yes, in my crib and in my room!  The afternoon was pretty quiet.  Mommy and I went to bed early again. 

March 12:  Slept well again last night.  Aunt Chris washed me up and put me in my PJs last night, and my diaper leaked over night!  Mommy stripped me and put me in with her and Daddy, still on my bipap.   I slept late with Daddy.  Casey went to school today.  I was supposed to take a nap but I catnapped instead.  Finally, Mommy got me to sleep in my crib on bipap.  It took most of the afternoon to get me to sleep!

March 13:  I was a little restless last night.  Daddy took off my bipap at 5:00.  For a while I was very silly; squealing and talking.  Then I fell asleep with Daddy for a while.  I had a Nurse Nancy L today.  She is the nurse who weighs me, but now she's doing some of my shift care, also.  I weighed 15 pounds 11 ounces today.  Last Wednesday I was 15 pounds even.  Could I really have gained 11 ounces?  Mommy is going to keep the amount/calories of my food the same for another week and then see how to adjust it.   I played with my nurse a lot this morning.  Mommy blabbed on the phone a lot.   Then I was very tired and quickly fell asleep in my crib.  When I got up I played some more and watched some TV on my belly.  Then I took another nap, downstairs, and woke up very rested.  I played with my Daddy.  No nurses at all this evening and no Aunt Chris.  Just us.  Oh, Casey and Mommy, Nurse Julie and his teachers were on TV tonight!  It was a story on Special Education, not SMA, but Mommy is always proud to show-off her big boy.

March 14:  I slept pretty well last night.  Had my bipap on for over 12 hours!  I did have gas, as usual, but Mommy would flip me over and settle me and rub my hand.  I really don't even wake up, just get restless for a minute. 

March 15: This morning my Speech person, Tami, came.  She had one of those lollipop things that spin.  She put a Dum Dum lollipop on it and let me try it.  I kind of liked it but my heart rate got really high and I made lots of spit and all of a sudden, boom, my SATs dipped down to 75.  Mommy and Daddy took care of me really quickly.  Then, I got back to sort of normal and they tried to let me taste some baby food bananas.  It just wasn't in the cards for me to try that kind of stuff today.  I was not my usual self.  I was pretty sleepy today.  Mommy brought me up twice to sleep in my bed.  Ahhhh.  I think the tub bath this morning helped my take an early nap.  Then I was up for a while, but a little fussy, and Mommy thought I was tired, so she brought me up and I pooped.  That's why I got fussy.  This antibiotic thing has really made me go a lot!  Daddy came home at 3 today because we have no evening nurse for Casey. 

March 16:  No nurse at all today.   Mommy did all the medical and feeding stuff while Daddy spent a lot of time with me.  She said if she was not changing one boy, she was changing the other, if she was not giving one boy medicine, she was giving the other one medicine.  She also had to do our cough machine, get us washed up and dressed, and make our beds and make our food and clean our equipment, etc.  Aunt Chris came over later and helped entertain us.   And, Grandma and Grandpa O'Neill came over and brought dinner for everyone so that was good.

March 17:  Happy St. Patrick's Day!   I had a good night last night.  And I was very happy this morning.  Casey is still kind of sick, but Mommy says he's over the worst of it.  This afternoon I went with Mommy, Daddy and Aunt Chris to look at a camp for Grandma and Grandpa Canosa to stay in this summer.  I rode in my car bed with my bipap on.  I loved it.   Once or twice Daddy stopped and I really wanted him to keep going!  I didn't get out and look at the camps.  I stayed in the car and they took turns staying with me.  Then I slept on the way home.  I was happy for a bit when we got home and then I acted MAD, SAD, ANGRY, GRUMPY.  My heart rate was way up and I was crying.  No one could figure out what was wrong.  Finally, I fell asleep on bipap after Mommy used my IN/EX and did some boom-boom and suctioned me out really good.  Later, Grandma and Grandpa O'Neill came over and brought a corned beef and cabbage dinner.  Mommy made Irish Soda bread and Watergate salad.  Grandpa was wearing a green carnation and I took it from him.  I was happy all evening.   Wait until you see some of the pictures Mommy took of me and Casey today.

~~Well, it's been a few days:  We have to catch up here~~

March 18:  Did not sleep well, at all.  Mommy suspected my ear was bugging me again.  She called the doctor and he came over in the evening.  Sure enough, I still have an infection!  Now I have to take that yucky Augmentin that makes my belly hurt and makes me poop a lot and get red butt.

March 19:  Mommy let me taste some baby food today!  I was laying on the counter in the kitchen, which I thought was cool as it was, and then she gave me my nuk brush with some yummy stuff on it!

March 20:  I had a bad episode first thing this morning.  Mommy and Daddy had just brought me downstairs and I got all chokey and I dropped my SATs down to 69.  They used the suction, IN/EX and O2 and bagged me and then I felt better.  It was pretty quick, but still scary.  A little after that my nurse Nancy L came.  She missed all the excitement.  Oh, I gained weight again!  Today I was 15 pounds 13 1/2 ounces!  That was after a poop and without my tube!  I had a good day.  I played with my nurse and Mommy.   I tried to stay away from Casey since he is sick.  I didn't like my belly for more than 10 minutes.  I did have a good time in the kitchen with Mommy tasting baby foods.  It really excited me!  I was talking and tasting and talking some more!

~~~Now we should be caught up~~~

March 21:  Well, last night was my first night all night on bipap for several days.  Mommy turned down my pressure to 15 from 17 and gave me Tylenol twice.  My ear is starting to feel better!  Casey, Daddy and Nurse Julie went to get a chest x-ray for Casey this morning.  Mommy and I hung out and played in my room.  Then she put me to bed on my bipap and before I fell asleep, my Nurse Rachel came.  She actually got me to go to sleep!  Right when I woke up, my teacher, Jennifer came.  We had so much fun!  I was very attentive and "talky".  We played with blocks that I knocked down and she tried to help me play with play dough but I didn't like it.  Oh yeah, I colored with markers for the very first time!  I made a picture for my brother, Casey.  Then, after Casey came home, (his x-ray was negative) we took a bath together.  Fun!  We had tons of Mr. Bubbles to play with!  I kept stealing Casey's foam dolphins and whales, ha ha.  I only took a short nap on Mommy today with my bipap, rocking in our chair.   Then I tasted some more baby food in the kitchen.  Hey Daddy, I really don't like the banana mixes, can you get something else?  I was kind of spitty this evening, but I was having fun playing with my spit.  Mommy and I went to bed really early tonight.  I read my books and relaxed and didn't fall asleep until my normal time!

March 22:  I slept so good last night!  Mom rolled me over and back and over and back and I didn't even know it!   I had some gas, but not too bad.  We had a pretty quiet day.  My OT came and played with me and looked at my range of motion and stuff.  I took a nap upstairs.  I was happy when I woke up.  I played and then hung out with Mommy in the kitchen.  Daddy came home early since we have no nurse.  I got crabby later and took a nap on the floor with my bipap while Daddy watched me.  I tricked Mommy by acting sleepy this evening, so we went up to bed early, but then I didn't fall asleep for over an hour!  Mommy read me some books and then she propped them up so that I could "read" them myself.  I'd make a funny noise when I wanted her to turn the page!

March 23:  I tricked Mommy again.   She thought I'd be perfect on bipap now, but I got fussy around midnight and she took the bipap mask off of me.  I probably would have gone back to sleep with it back on, but she was so out of it and tired that she just took it off!  This morning I was pretty good.  I didn't want Mommy to have her breakfast, though.  I made her come and sit with me on the floor in the living room and we watched Roly Polly Olie together.  For the first time ever, I was fascinated with the TV!  I've watched some movies before, and I do like Elmo and Baby Mozart, but Roly Polie Olie is such a crazy, cool dude, he really had my rapt attention!  Later in the morning my Aunt Peggy came and visited.  She said I was "so precious"--like I don't already know that!  She loves coming to visit me.  Mommy and Aunt Peggy "decluttered" some in Mommy and Daddy's bedroom and then they decorated for Easter.  Daddy found all the Easter boxes that were in the attic!  Last year Mommy didn't decorate because I was just born a few days before Easter!  You know, I am going to be ONE in a few weeks.  Aunt Chris teases me and says that I'm "only ZERO and Casey is one, two, three, four, FIVE!"  Let's see, so then Aunt Peggy played with me a lot and thought I was very strong and silly because I was moving my head back and forth and winging around all my little toys.  I think she had fun with me.

March 24:  I was perfect for Mommy last night.  I didn't open my eyes even for a second, and I didn't have a lot of gas.   She was able to flip me over lots and my mask stayed on perfectly.  Sometimes it goes crooked and then I usually open my eyes and wonder what's going on.  Oh, FYI, so far I have no "red-butt".  Mommy is giving me double the amount of acidophilus she usually does and is putting on some good diaper cream.  So, Mommy got to go out today.  Nurse Julie picked her up and they went shopping for a while and then got Aunt Chris and went to Friendly's for breakfast.  They met "Uncle" Bill there (he's Julie's boyfriend).  Then the girls went shopping again.  I stayed with Daddy and he took care of me really good!  We napped upstairs for a long time.  He had me on bipap and gave me my feedings.  Then we came downstairs and I sat in the beanbag for a while and we played.  Then Mommy came home.  Then, Jennifer (our teacher) came over with Alaina (3 and a half) and Gregory (1 and a half) and their 10 week old puppy, Howie.  I hated Howie!  He tried to lick me and nip me walk on me.  I was so scared that I cried!  Casey like him a lot.  He didn't care that he was hyper and all over him.  I guess he's braver than me!  I did like Alaina and Gregory though.  They are fun to watch and listen to.  They had fun playing with books and toys.  I think Daddy wanted to keep Howie. I sure hope he doesn't get one of those puppies for us!  In the midst of all that, Grandma and Grandpa O'Neill came over.  They had fun with all the commotion.  Mommy and Daddy were doing stuff in the kitchen, with Grandma and Aunt Chris was hanging with Casey, so Grandpa watched me.  I didn't even mind being out of sight of my parents!   Grandpa was silly.  He let me steal his keys and he put his tie on my head.   He talks silly to me and plays toys really well.  I stayed in my stroller while they had dinner.  I didn't get chokey or anything!  I talked and talked and talked!  Mommy and I got a late start up to bed.  I fell asleep at my normal time, 8:45!

March 25:  I wasn't too great for Mommy last night.  I had lots of gas.  I was pretty good until late morning, then I got fed up and wanted complete attention.  Then I wanted my bed and bipap.   Mommy and Nurse Julie brought Casey upstairs to watch TV on Mommy's bed.    I hung out in my bed on bipap and fell asleep. I had Nurse Elizabeth for a couple of hours today.  She played with me in my room and then she helped Mommy give me a bath.  Instead of my baby tub I used the mesh-covered sling that I used to use in my baby tub on the bottom of the big tub  Does that make sense?  Mommy will take a picture of me with my new system soon.  She put Casey's "tub cub" on top of that so it was really comfy.  I liked it!  It felt so great to be in the big tub and move my legs all over and let my arms stretch out!  That baby tub was way too small!  Some time I will use Casey's bath chair, but this works fine for now.   Mommy doesn't want to have to fill up the tub so high unless I really need to be on the chair...Then I came downstairs and rocked with Elizabeth, but I wouldn't sleep.   Mommy took me and rocked me during Rosie and that didn't work.  She tried bipap, no bipap, bipap, no bipap.  Then Nurse Nancy R came for Casey and she tried to rock me.  Then Mommy got me back.  Then Aunt Chris came and she tried.   Finally at 6PM I fell asleep on my bipap!

March 26:  Quiet day.  I had Nurse Elizabeth for a couple of hours.  It started snowing this morning.  Lots of white stuff!  It's supposed to get really yucky later on.  I took a long nap in my crib on bipap.  Mommy got some stuff done.  Later in the afternoon we all went into Casey's room and hung out.  Aunt Chris didn't come tonight.  It was just Mommy, Daddy and me and Casey.  Kind of nice.

March 27:  I had Nurse Nancy today.   Casey was up all night long for some reason, so I stayed in the living room with Mommy and Nancy while he slept in.  Our PT came but only woked with me!  She was very proud and pleased with my strength.  I was happy for her and let her stretch me good.  I did not like when they put me on my belly though.  I tried for a bit, but then I cried.  She said my Kid Kart Express should be coming in a couple of weeks.  I can't wait!  Then we had to get packed up to go to the MOVIES!   Mommy and Erika (social work student doing an internship through our pediatrician's office and the University of Vermont) worked on getting a movie event for kids with special health needs.  Casey went to the first one two years ago and liked it so much that they wanted to do another event.  So we went to St. Albans and saw ICE AGE at the Welden Theater.  Nurse Nancy L drove up in her car (for me) and Nurse Nancy H walked there from her house (for Casey).  There were all sorts of kids and families there.  I wasn't impressed with the movie, but I was an excellent boy.  I sat with Mommy for a while and Daddy for a while.  I sucked on a Twizzler and played with some toys.  I liked when Mommy took her straw and blew in my face and hair.  Oh, I rode in my car bed and was on my bipap up and back.  I did fine.  No suctioning at all.  When we came home I got kind of grumpy because I was so tired.   Mommy and I went to bed early.  But I didn't go to sleep early because I decided to fuss and cry, especially when Mommy put my bipap on.  I did like reading books and looking at pictues.  Mommy gave me Tylenol in case something was bugging me and then she gave me the bottle and I sucked on the tip like a bottle!

March 28:  I had a good day.  I had Nurse Nancy L.  She did my in/ex this morning for the first time.  I did fine.  Then, Mommy went out to the store because Casey had snack today and she had forgotten about it.  While she was gone, Tami, my SLP came.  She brought a whirly holder and put a toothette in it.  I like it and did well with it.  I did get kind of "foamy."  Then Mommy came home and showed her how I suck on my Twizzler.  We also used the squiggle pen.  I did do one dip because I had so much mouth stimulation that I had too much spit and got chokey.  For now on, Mommy will suction me when Tami is here whether I need it or not!  Mommy got her "ear checker" thing in the mail today.  She tried to look at my ears but was kind of chicken.  She saw lots of wax.  She will have to get a lesson from my doctor as to how to use it and what to look for.  Oh, by the way, I did not sleep well last night.  I was restless again and had lots of gas.  Anyway, let's see.  Oh, I took a nap without too much encouragement.  Then I heard my teacher, Jennifer, coming up the stairs talking to Mommy so I woke up.  We played good!  I was very attentive.  We played games with my feet and sang.  We read a book called "If you give a mouse a pancake" and played with a mouse doll and pancake.   What else did we do?  We played with some polished rocks and knocked them together.  I was picking them up really good, Jennifer was impressed.  Then I hung out downstairs with Nancy while Mommy read in bed for a bit.  She said she was too overwhelmed with all the stuff she had to do so she took a break!  I watched almost 2 whole Sesame Street videos  and payed perfect attention!  Then I rocked with Mommy on bipap during 4 o'clock Rosie (repeat) but I would not nap.  Casey took a short nap after school and then came out and we all hung out.  Aunt Chris came, too.   I was doing well, but then I got really tired.  When Mommy and Daddy were getting ready to bring me to bed and get all my equipment together, I had an episode where I cried and cried and my O2 went down to the high 60s.  I came right up with oxygen, but Mommy got me upstairs quickly and put me on bipap.  I did good for a while, but then I just was so tired and out of sorts that I cried and fussed and then I'd laugh and laugh and then cry again.  Daddy came up with me and Mommy and Casey watched the end of Survivor.  Mommy came up when I was asleep!

March 29:  I had an okay night.   Mommy took me off bipap for a couple of hours so we could both sleep better.   I did my morning routine.  No nurse for me today.  It was kind of boring.   I was acting sleepy so Mommy brought me up to bed at 10:30 AM.  No go.  I played, then fussed, then played and then fussed.  On bipap, off bipap.   Finally, she brought me downstairs.  I got to try some McDonald's french fries.  I liked them.  I could get them into my mouth all by myself.  Then, Casey's nurse, Sue, took me and rocked me and I was out like a light!  I only slept for an hour though.  I think some gas woke me up.  Aunt Chris brought Mommy as centerpiece basket of flowers that are so pretty and smell so nice!  We had a quiet evening, just Aunt Chris, Mommy, Daddy and me and Casey.  I got tired early, like usual, so it was off to be for me and Mommy!

March 30:  I had a good morning.   Casey and I took a tub bath together.  We are both getting so big there wasn't much room left in the tub with the two of us in there!  I do have some room to wiggle and kick and splash a bit.  I love playing with all the bath toys.  We smelled so good fresh after!  Then we got ready to color eggs.  I didn't care much for it.  Casey had a good time, though.  After, Casey got to go outside for a bit.   I stayed in.  I took an afternoon nap upstairs in my crib.  Nurse Nancy R watched me instead of Casey.  Mommy watched Casey while he napped and got to clean up downstairs.  She also made a bunny cake and decorated it with colored frosting, coconut, colored frosting, jelly beans and twizzlers.  Nurse Julie brought her some gorgeous tulips.  I was fascinated by them.  I was a pretty good boy this evening.  I didn't fuss too badly and I fell asleep pretty easily.

March 31:  Happy, happy Easter!   I slept soo good last night.  Maybe it was because Mommy told me that the Easter Bunny wouldn't come if I was awake.  I stayed on bipap all night.   That was the first time in a long time that I was on for that long in a row.   I woke up earlier than I had been.  Mommy and Daddy brought me downstairs.   I saw Nurse Darla!  She is back from visiting Germany after being there for more than 3 weeks!  Casey was still sleeping so I had to wait to look for my Easter basket.  Mommy did let me look at my goody bag full of stuff from Fake Aunt Tina.   Sooooo cool!  She knows me well and she's never even gotten to meet me in person!  Finally, Mommy woke Casey up and he and Daddy searched for our Easter goodies.  We each got a basket, PJs, and one other thing.  We got lots of cool toys that wind up and spin and bubbles and little beanies and all sorts of stuff.   Daddy got a basket, too, and Mommy got a bench for outside!  Then Nurse Sue came and we all got washed up and dressed in the shirts that Nurse Julie got us (matching striped blue, green and white ones from Gymboree) and khaki pants.  Then Casey and I had our pictures taken together.  Don't know how they'll turn out--one of us was usually looking in a differnet direction or fussing or something or other.  Since I had been up for so long, I took a nice nap upstairs on my bipap in preparation for a long afternoon of playing at Aunt Chris'.  Before we went to Aunt Chris', Ashely and Sammie came over from next door.  They read us some books and talked to us for a while.  And, they gave us an Easter basket with goodies in it!  There was a big monkey and a small one, and a chick that lays jelly bean eggs, and some stickers and some bubbles.  It's so nice to see them and very thoughtful of them to bring us such nice gifts!  Then we drove to Aunt Chris' which is about 20 minutes away.  Casey and Nurse Sue and Aunt Chris took a walk around the block while I hung out with Mommy and Daddy. It was fun being in a place different than our house!  Then everyone came back and we opened up some gifts from Aunt Chris.  We each got a book and a really wild Old Navy shirt and some little toys.  We played and read books and waited for Grandma and Grandpa O'Neill to come over.  They brought us some goodies, too, and some things for Mommy, Daddy and Aunt Chris.  Then they all had supper.  I wore my bipap like a good boy and hung out with Casey on the floor while they all ate.  Everyone talked with Grandma and Grandpa Canosa in Florida and Uncle Bob, Aunt Brenda, Cousins Caitlin and Joe who were on vacation there.  Then, all too soon, it was time to go home.  We got home just in time for me to go to bed!  It was a good day!

April 1:  I slept pretty well last night.  Must have been all the action from yesterday!  Today Mommy got us up to a slow start.  Nurse Elizabeth was supposed to come for me but she kind of had a cold.  So she ended up coming, but helping Mommy clean instead of taking care of me.   Actually, Nurse Julie and Nurse Elizabeth did stuff while Mommy took care of me and Casey!  They rearranged the living room so that there's more room and they put the computer Daddy built on a desk and straightened up all of Daddy's mess.  Then I took a nap in my crib.  Then I hung out and played and watched some videos and then Rosie with Mom.  I helped her make my formula and I tried a bit of baby food again.   Aunt Chris came and played with Casey and me.  Daddy came and was not too thrilled with the rearranged living room, but he'll try it.  He rocked me in our chair and we both fell asleep for a while.  No one put me on my bipap.  Ha ha.   At bed time Mommy put my bipap on me and I wasn't happy.  I had lots of spit and I was coughing.  I cried, too.  I did a couple of dips because I was chokey.   Mommy and Daddy in/ex'd me and gave me some oxygen but I still had that cough.   FINALLY, an hour and a half later, I fell asleep quietly.  At 10:00 Mommy snuck the bipap on me and I slept well all night long.  I hate when I do sooooo good all day and then have a rough time.  I like days that are all good!

April 2:  Nurse Eliz came again but Mommy did all of my care.  Mommy and Eliz were cleaning queens today.  They got two bathrooms done and the entryway and laundry and trash out and some vacuuming and some mopping.  Mommy went out for a few minutes but Nurse Sue watched me.  Then I took a nap in my crib for a nice, long time!  Afterwards, I played and watched two videos and then helped Mommy in the kitchen and we made my formula.  I was a very good boy all day.  I was even a good boy when I had to go to bed.  After Mommy gave me a tub bath, she got me all snuggled in my Pjs and then Daddy stuck me right into bed.  I was fine with my bipap.  Mommy had some pudding she was eating in bed and she gave me some.  I loved it!  Somehow I wasn't too scared to taste food, and breathe at the same time while I was on my bipap.  I really didn't swallow any of it because the bipap makes it shoot out of my mouth, but it sure was fun tasting it all!   It was a parfait with vanilla and chocolate pudding and custard with whipped topping.  Yum.  I fell asleep at 9PM!

April 3:  Today I had Nurse Nancy L.   We had a slow start, and I was a bit grumpy, but fine.  Then Pam, my PT, came.   I had lots of fun! She brought some light up and musical toys for me to play with.   I had a ball!  I tried pulling the string and pushing the buttons.  I could kind of do it!  I didn't mind her stretching me too much.  And, I showed her how I can go on my belly on my boppy.  She showed Mommy how to prop my legs, but I kept on moving them and she said it was okay, that I still would get the stretch!   I took a nice nap in my crib after PT.  Then I played with some more toys.   I was in a much better mood!  But, Nurse Nancy put the Emla cream on my leg, so I know what that means!  I had to get my Synagis shot!  Ugh!  Mommy held me and I only cried for about 15 seconds.  Then I got to go into the kitchen and help make formula.  Mommy had saved some pudding from last night so I tried that again.   Soo soo good!

What I Like:

I love so many things!

I especially love holding my toys and winging them around--

I love to hold:

my feather pen,

finger-puppet bug,

jingle ball,

plastic jelly bean bag

I also love to knock over blocks

I am very interested in books

I'm starting to like TV and videos more: 

I watch:

Roly Poly Ollie

PB & J Otter

Elmo's World

any Sesame Street video

Baby Mozart

What I Don't Like:

taking naps when it's not my idea

laying on my belly


none here yet!



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