More Thanksgiving Holiday Pics

The Long Trip Home

We headed back home today. Cedie had another fabulous night with no alarms (St. Louis weather must really agree with her..)! I had to wake her up at 6:30 (she slept thru her 6am feeding and breathing treatment!) and give her a quick bath so that she was ready to go. Then came the huge process of gathering all her stuff together and loading the car back up.

Cedie did great again on the trip home. She really enjoys car rides. She took about an hour nap 1/2 way into the trip and the rest of the time she sat happily in her car seat, enjoying the ride.

We had such a great trip! I was so happy that everything went so well and I truely think Cedie had a great time! She was so happy the entire time we were gone!

Meeting Santa/Big Shopping Adventure

After her best night ever (she didn't need suctioning from 12:30am to 6 am and none of her alarms ever went off- a first!), Cedie had two firsts today- Meeting Santa Claus and going to the mall!

We 4 went with my aunts Lynda and Becky, Nana, G-daddy, and my sis Melanie to the St. Louis Mills Outlet Mall. Cedie has never been to a mall before but she was doing so well that we decided to take her along. We waited until after lunch in hopes that the big crowds were through.

She did great for the whole adventure. She never fussed and she looked really happy the whole time we were there. She even smiled for Santa and their photo!

Tonight Cedie and Dylan opened their Christmas presents from the St. Louis family. Cedie acted like an old pro! All of her therapists would be so proud. She sat up (by herself!!!) and ripped into each package with very little help. I mainly just had to take each piece out of her mouth! It touched my heart to watch her act like a normal little baby girl! If it weren't for all the hoses and wires (and the suctioning we had to do right in the middle of gift opening time) you wouldn't have known she's been sick at all.

Thanksgiving Day

Happy Thanksgiving!

We had a great time today. We got to visit with a lot of family. We all ate until we were all delightfully stuffed. Even Cedie got into the spirit and tried a roll, some soup and a couple green beans!

Cedie has done really well so far. She slept good last night (just a couple de-sats) and she woke up in a great mood. She was really socialable and was smiling a lot! She showed off all her new tricks and played with some new toys. She even got to meet her 1 week old cousin Dominic and her 11 month old cousin Zackery!

Off To St. Louis, MO

We are taking Cedie on her first big trip today. We are going to spend Thanksgiving with all of my family (on my dad aka G-daddy's side).

My Tuesday night nurse and my Wednesday day nurse were both sick and unable to work. I was running around frantic hoping that I get everything packed. I packed two of everything and then some! Cedie sure comes with alot of stuff! Thankfully Memaw was able to come over this morning and help watch Cedie while Chris and I stuffed everything into the car!

Cedie did really well on the ride to her Great Grandmommie's house. She only slept for an hour of the trip. The rest of the time she watched out the window and entertained herself (I often wonder whats going on in her head when she smiles and laughs...).

We made the trip in a little over 5 hours. We had to stop a few times for diaper changes, suctioning, feedings, and a breathing treatment.

When we got there, we set up the room where Chris, Cedie, and I were going to sleep. It took a while to set up all of Cedie's various machines. It looked even more like a mini-hospital then her room at home!

Thanksgiving Dinner #2

Tonight we went to Thanksgiving dinner #2 at my Great-Great Grandmother's house. My great-great aunt Rita and great-great uncle Charlie from Texas were there. Last time they saw me I was still in the TCU at LeBonheur (Easter '06). My great uncle Jim and great aunt Kim, and their two children were there as well. Silly G-daddy, my Nana, and aunt Mel-Mel were there too.
Everyone just ooo'ed and awe'd over me! And boy did I show off for them! I sat up by myself several times for a few minutes each time. I rolled and pushed up. I was very happy to show everyone all my neat tricks including waving!
Since Uncle Charlie is of Spanish decent, he made a Spanish Thanksgiving! I watched everyone eat but I wasn't into it tonight. Maybe on Thanksgiving day....

First Thanksgiving Meal

We have three Thanksgiving dinners to go to this year. The first one was today at Granny and Grandpa's house (Chris' dad and stepmom). We will have another dinner Tuesday night with some of our Texas family over at my great-grandmother's house. Thursday (assuming all is well with Cedie) we will be dining with my grandmother (G-daddy's mom) and the rest of my St. Louis family! --- Last year's Thanksgiving was spent at LeBonheur.

We had a good time with Granny and Grandpa today. Cedie wasn't into eating today but she did show off her sitting a little.

Her coughing is much better but we've had to suction her ALOT and that antibiotic is tearing her poor little tummy up! We lost count of all the dirty diapers she's had today :-(

*** I got Cedie her first pair of boots today. I found some lite pink suede boots in a 0-3mths! She has such tiny feet and its hard for me to find shoes in her size so I was very excited.

Cold Update

Cedie started coughing Thursday. She was doing that coughing that shakes her whole body and makes her turn red all over. Still no temp and she still acts like she feels ok (in between the cough spells).

I decided to call her primary doctor today. She isn't any worse but I didn't want to get stuck going to the ER over the weekend. They decided to go ahead and put her on an antibiotic and a cough medicine. This is the first time she has ever tried a cough medicine... Hopefully it will help because we have BIG plans for Thanksgiving and we need her to be well.

CPAP Update- Getting Sick?

Respiratory wise, Cedie has been doing great. She has been on continuous CPAP since 7am on November 1st! We haven't had any reasons to put her back on her rate. Last Friday, we weened her PEEP from 8 to 7. As long as she continues to tolerate that PEEP (as she has) we will ween her to 6 this Friday.

This morning Cedie woke up with a very runny nose and it was tinged with blood. Not quite sure why... She also has a fever of 99.7. We will continue to monitor her temp today and hopefully it won't get out of control. Hopefully this is just a little sinus issue. We'll keep you updated.

OT Session

Cedie had her occupational therapy today. She did great. She really seems to enjoy her therapies (except speech unfortunately). They worked with puzzles, blocks, and books. They worked on sitting and bringing her hands together. Ms. L brought a new vibrating ladybug that Cedie seemed to really like. It must have felt good on her teeth because she kept putting it up to her mouth.

*It is so neat to see her expressions these days! She is definitely more expressive than she has ever been.

More Fun with TIPS

I have a great TIPS therapist! My OT therapist (who is also terriffic) says we are so lucky to have gotten a TIPS therapist that is so good and does so much to help mom and me with my development!

This week she brought some more cinnamon dough. I just love that stuff! I really work it in my little hands and its wonderful to lick. Ms. D also brought a new game that she made for me. I impressed mommy and Ms. D with pulling the pieces (which were velcroed to the paper) off. My fine motor skills are improving more and more each day! Ms. D also brought some blocks wrapped up in tissue paper. I seemed to like ripping the paper off (can't wait till Christmas- guess I won't be letting Dylan open all my presents this year :-) ).

I did alot of sitting on my own during the session. Ms. D said she can really tell how strong my back and side muscles are getting. Go me!

Tooth # 7

Tonight I discovered Cedie has a new tooth popping thru! This is tooth number 7 for those of you keeping count :-)

Busy Day w/ 3 Therapies!

Normally Cedie has TIPS on Mondays, OT on Tuesdays, ST on Thursdays, and PT on Fridays. However, due to various reasons, she ended up doing PT, ST, and TIPS all today.

PT went great! She was real excited to hear about Cedie sitting by herself during our appt yesterday! She is so proud of Cedie and how strong she is getting. Cedie did great during the whole 1 hour session.

ST was ok. She just gets really mad when the therapist messes with her mouth. Cedie is not opposed to putting things in her mouth (everything she touches seems to end up there these days) but she does not want to swallow! By the end of the session she was thru with all of us and was just ignoring everyone.

TIPS went extremely well! First, the therapist gave her some uncooked cinnamon to play with. This is a good sensory tool (and its ok to put in her mouth... which ofcourse she did). She really liked it! She was licking it and smiling. She even kicked her legs up and down in a "happy dance". The therapist had never seen her respond to something that well. Next we worked on sitting and she showed off a couple times like she did at the doctors! Go Cedie! Finally she was straddling over her memaw's leg (memaw came to watch) and was playing with a ballon. Next thing we knew, she pushed up onto the ball and STOOD up to look around. She stood there for a couple of minutes! She did this twice! What a big girl!

Pulmonology Clinic/Shots

We took Cedie to her pulmonology appt early this morning. Despite being woke up early, she was in a GREAT mood. While we sat in the waiting room, she "danced" to her music player that she got for her b-day. Everyone commented on how cute she was! She just smiled and bobbed her head back and forth while kicking her legs and moving her arms! You would have thought we were at Disney Land!

I think part of her happiness was because she could tell her Mommy was so very excited to tell the docs how well she has done. I have never been more excited to be at a clinic :-)

When we got to a room, I sat Cedie on the table. She sat straight up with one hand propped on her leg (like we've been trying to get her to do...) and looked around. Her nurse and I didn't say a word. We just watched in awe. She sat there, totally unsupported, for what seemed like a long time (probably 1-2 minutes). However, the spell was broken when the RT came in to get her vitals. She plopped her self over to the side as soon as the door opened. Still, I was very proud of her :-)

Her vitals were great for the most part. Her weight was down a bit (6.39 instead of 6.45) but her height went up (62 cm instead of 60). Her CO2 was 38!!!! (normal range is 35-45 but there was a time when we were happy with anything under 55). Her O2 sat was 98% (great).

Her pulmonologist was also very excited with Cedie's progress. He thought it was "great" that Cedie had been off her rate since last Wednesday. Our next step is to ween her PEEP. She is currently at 8. Our goal over the next 6 weeks (we see him again 12/18) is to get to 4. We are so close to coming off the vent!!!

After that visit we went to see her PCP to get her 2nd RSV and 1st Flu shots. Poor baby fell asleep about 10 minutes before the nurse came in to give her the meds. Nothing like getting woke up by two sharp pokes in your thigh! Anyhow, she got over it pretty quick. When we got home she took a 3 hour nap-it was a big day!

Fun With OT

Cedie's big brother Dylan helped out during OT this week. You can tell how much he adores her and she is just in awe of him. When he is in the room she really focuses on him and what ever it is that he is playing with.

She had a great therapy session. She is getting so strong and she is much more interested in the toys (especially when big bro likes the toys too).

Sunday Dinners at Nana's & G-Daddy's

Since we are now into RSV season, mommy doesn't let me get out of the house much. However, one thing we try not to ever miss is Sunday night dinners at Nana and G-daddy's (mommy's parents).

I love this time spent each week at Nana's house. I always get to have such fun (and lots of attention).

This week I got to swing in the new Winnie Pooh swing that Nana bought me. Once, Nana took a break from cooking to come say "hi" to me. I gave her one of my prettiest smiles. When she turned to leave I was so upset! I let out my pitiful cry (which ofcourse brought her right back to me!!!). I love being loved on by my Nana!

Also this week, I played with my G-daddy (Dylan gave him his name). He is so silly and he had my smiling a lot! He showed me his new BIG TV and I was very impressed :-)

CPAP Update

Cedie has now been on CPAP (off a breathing rate- initiating all breaths) since Wednesday morning at 7am! She is doing great! She doesn't seem to be having any problems when she is awake. She has had a few apnea (apnea is when you stop breathing) alarms (no more than 2 in one night shift) but she recovers well on her own after being nudged a little.

We see her pulmonologist on Wednesday. I can't wait to tell him how well she has done! I am anxious to see what his next plan will be!

Unfortunately for Cedie, Wednesday we will also be seeing her pediatrician and getting her 2nd RSV shot and her 1st flu shot :-(

More Halloween Picturs

Physical Therapy Update

Cedie's physical therapy is going great. Today her therapist said she could really tell how much stronger Cedie is. She has improved so much in the short time that she has been able to get therapy at home. She is pulling herself into a sitting position all the time now (she just won't stay that way). Its really cute because she just pops up, looks around, and then plops right back down. She does this alot in her bouncy seat.

On the flip side, when she is determined not to sit up in an upright position, she lets nothing stop her! She has figured out how to get out of her bumbo chair! She arches her back and straightens her legs until she makes herself fall backwards (not a really good thing...).

She has also discovered that she likes to stand up straight. Just a couple weeks ago she was real resistent to put any pressure on her feet. Now she seems to really like it when we hold her in that position.

I read on the CHARGE listserv the other day that a 29 month old Charger just started walking. They say that is a more typical walking age for these kiddos. Some walk even much later than that. We are in no rush though. Cedie is on her own time table and we are happy with that! Since she spent most of her 1st year in the hospital, and her health is so fragile, we learned not to take any of this time for granted and we are throughly enjoying each step of her amzing progress into toddlerhood!