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When Time Stands Still

When Time Stands Still" by Debbie Hilton-Kamm

It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time just stands still
In that moment, that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play? Will I see his wedding day?
All the planning, the hopes and dreams
Are put on hold -- just what does this mean?
His crib is empty, his toys alone
For now, the hospital will be his home
This is a place where time stands still
Where the void's too large to ever fill
For in a hospital's intensive care
Children lie, some unconscious, some aware
And time is measured by a new yardstick
Every second marked by a monitor's tick
Noting every breath the child takes
And every beat his tired heart makes
Just a moment of watching a child writhe or strain
In sedated confusion, or fear or pain
Or pleading for a drink to which you can't oblige
Seems like far more than an entire lifetime
And the children who live far too long
In hospital gowns, trying to be strong
They have old souls, that's what they say
Because in each moment they've lived a thousand days
For those who say time goes by too fast
Sit with an ill child, and see just how slowly time can pass

Dia de los Angelitos

In Mexico, November 1 is known as "Dia de los Angelitos" or Day of the Little Angels in honor of children who have died.

I am in my third semester of Spanish and in my class we talk about various Hispanic customs, such as Dia de los Angelitos and the day that follows, Dia de los Muertos (Day of the dead- celebration of (adult) ancestors).

In the spirit of Dia de los Angelitos, I want to honor my angelito...

Everyone that met Cedie fell in love with her. There was something so special about her. Although it was hard to catch her smiling, her smile could change your whole day. I loved the way she was completely facinated with the men in her life, her daddy, her brother, her G-daddy, and her other two Grandpas. She loved to rub her dad's face and the top of his shaved head. She loved to wrap her tiny fist around her brother's finger and touch his nose. She loved G-daddy's beard. Though she couldn't talk, she showed the women in her life just as much love. She insisted on having her mommy's tshirt every night. She loved playing with my hair and my bracelets. She was the best cuddler and myself, her Nana and her Memaw (and Nurse Kim and Godmother Rachel) could rock her all day. She was a very content little girl and she would entertain herself like no other baby I've ever seen but she also loved to play with her family and her nurses (when she was in the mood). She did have a very big temper but wouldn't you if you were poked and prodded the majority of your life? I loved her tiny feet and georgeous, curly auburn hair. Her nose and her cheecks- who didn't love them! I could go on and on because she was such an amazing little girl. I miss her so much and my life will never be the same without her.

A million times I needed you
A million times I have cried.
If love alone could have saved you,
You would have never died.
In life I loved you dearly,
In death I love you still.
In my heart you hold a special place,
That none will ever fill.
It broke my heart to lose you,
But you did not go alone.
For all my love went with you
The day God called you home.

© Patricia Grant

Heaven's Baby Castle

In a baby's castle just beyond my eye
My baby plays with angel toys that money cannot buy

Who am I to wish her back into this world of strife?
No, play on my baby, you have eternal life

When all around is silent and sleep forsakes my eyes
I'll hear her tiny footsteps come running at my side

Her little hand caresses me so tenderly and sweet
I'll breathe a little prayer and close my eyes and embrace her in my sleep

Now I have a treasure I rate above all other
I have known true glory - I am still her mother

Originally Written by Beverley Stuive, in memory of her son Josiah James Alexander Stuive (I changed all the "his" to "her" for our Angel Cedie Lynn)

Missing Photo

Chris found this photo on one of his old cell phones. I don't think I ever posted it. I'm not sure when it was taken but I do know she is in the hospital bed and my best guess is early 2006 (maybe February since the puppy has pink hearts all over it).

To All the Cedie Fans of the World

We want to thank all of you Cedie fans for sending your thoughts, wishes, and prayers. It meant so much to us to know how loved our daughter was and to know how many lives she touches in such a short time.

Thank you all who came to her funeral vistiation and/or services. It was overwhelming to see all of those who knew/loved our precious angel. I have never seen a turn out like that. Words can not express how conforting it was to have each and everyone of you there.

Our Little Angel

Our little angel went to Heaven around 9:30 this morning. She was a very special little girl and she touched so many lives. We will always cherish the memories she left us with. She was a very happy baby and we wouldn't trade the last 18 months for anything.

Dylan wrote this song back in July 2005 after her first set of surgeries:
Cedie, Cedie I love you
Cedie, Cedie I love you
Pick some flowers
For Cedie
Won't you come home soon

I will never forget this song or her.

We would like to thank everyone for their prayers and support. It meant so much to us to know how loved our daughter was all across this world.

Prayers Needed

Sunday night Cedie went into full arrest. It took 20 minutes to resussitate her heart. She is stable now but the doctors do not know the extent of her brain damage. She has done an EEG test and we were told her prognosis is not good. However, they say there is a chance for improvement. We all know what a fighter Cedie is and she has proved them wrong many times before and beat the odds.

Please pray for Cedie, and her family. We need strength and God's healing. I can not answer my phone in ICU and I can't bear to leave her. I will try to get someone to update through here as much as possible.

Huge Progress Updates

Something has happened to Cedie. Something has just clicked and we couldn't be prouder!

Eating
Cedie has made tremendous progress with her eating. A month or two ago we were happy if she swallowed one baby spoonful of food. The nurses and I try at least 2x a day and she gets a 1 hr session with the speech therapist once a week. We couldn't push it too hard because she would just get mad and fight us. However, just in the past 2 weeks she is doing much better with the speech therapist. Last week she swallowed atleast 5 good spoonfuls. This week she ate double that! That was this morning. Tonight, I attempted to feed her again and she ate a whole ice cube size portion of processed peas and carrots! Even better- she seemed to enjoy it and didn't fight it! This is a major deal :-)

Sitting
Her sitting is really improving. She now will hold her head up and she can play with stuff while in the sitting position. She still has no fear and will just flop her self over when she's done sitting but still she has almost mastered it!

Crawling!
She is trying to crawl!!! She digs her toes into the mat, sticks her bottom in the air and uses her elbows to move! It is really cute to watch. She also does the "comando" crawling some and she rolls alot as well. She is determined to get around, regardless of her vent cords. She has even learned to take the circuit off so she can get further (ofcourse we have to put it right back on). I think she's trying to tell us she doesn't need that vent anymore- its just slowing her down! (Hopefully we can get her pulmonologist to agree here soon....)

Next Thursday is our 6 month evaluation with TEIS, TIPS, and all 3 therapists. We will discuss which goals she has made and what our goals for the next 6 months will be. Boy will they be impressed to learn of all this progress that she has made over the Christmas holiday!!!

Our Christmas Montage

Christmas 2006

Cedie's Christmas 2006

Cedie had a wonderful Christmas. She was actually the only healthy family member in the house :-) She was so excited Christmas morning. She loved unwrapping each gift. She also loved playing in all the wrapping paper after we opened the presents!

Cedie got many wonderful gifts. Santa brought a new "princess" chair, an activity table, a VCR/DVD player for her room, a new musical bath tub toy, and various other smaller toys. From the grandparents she got her first doll house (too cute!), some musical instruments, a ride along toy, a Little Leap Frog video learning system, and some clothes. Her nurses got her some really neat gifts and some super cute clothes as well. She got other cool learning toys from other family and friends. Overall, she really racked up! She is blessed with so many people who love her :-)

Thank you everyone and Merry Christmas to All!

This Time Last Year

I didn't have this blog last year during the holidays. Therefore, I will now describe Cedie's Christmas holiday of 2005. Although it is very sad, it really goes to show what a miracle it is that she is here celebrating in her home this year.

On 12/21/05 I called to check on Cedie, like I did every morning, as soon as I awoke. The nurse told me that she had a rough night. She had a plug and they had to do an emergency trach change. They also had to increase her O2 a little and her breathing rate. Before I could get dressed and get Dylan to Memaw's, I got a call from the day shift nurse, N. Cedie had gotten another plug. N had to give her mouth to mouth CPR. The plug was not mucus but tissue. I hurried to the hospital. It was my sis's birthday and she, Nana, and me were supposed to do lunch. Instead we all stayed by Cedie's bedside. She was not doing well. As the day went by they kept having to increase her O2 and rate. They did many tests to try to figure out why she was falling so sudden and so fast. That night they gave her a blood transfussion and started IV antibiotics.

The next day she was still fighting them. She was so tired and aggitated. She didn't want anyone to touch her.. not even me. The doctors could not tell us what was wrong. Their guess was pnemonia. They told us they would have to put her in a coma like state by using a paralyizing drug coupled with a sedation drug to keep her calm.

By Friday they decided she was too fragile and too critical to stay in the TCU- they moved her over to the ICU. She was on 100% O2 and the vent settings were really high. They were doing all the work.

She stayed in her coma in ICU straight through Christams. Children aren't allowed to visit in the ICU so Dylan could not visit her on Christams day like we had planned. Chris and I sat by her Christmas night and prayed for her and told her about all the presents she had waiting on her. She was able to wake a few days later and she was stable enough to move back to the TCU by New Years Eve.

Last week one of the ICU doctors said "she sure tried to die on us last Christmas."

Cedie is such a miracle and such a blessing to us all. She is doing so good at home. She gave a little scare last week when they said she had RSV but she reminded us what a fighter she is and she came home early.

She is still on continuous CPAP with a PEEP of 4- no O2! She is happy and content. She now fights sleep like every other baby her age. She is even trying to crawl! As I type this, she is sitting in her daddy's lap, dancing to the music coming from the TV. She has already opened a couple of gifts and she loves it!

Chris and I are now almost over our FLU bug. Dylan is feeling better. Cedie had a great night last night- no desats or apnea alarms! It looks like this years Christmas Day is going to be Wonderful!

The FLU Bug

The Flu has come to the Mock house. Luckily Cedie has not caught it (she's the only one).

Tuesday, Chris, aka Daddy, came home from work early because his body ached and he felt like he had a fever. Boy did he! He had a temp of 103 all night.

Wednesday, I drove Chris and Dylan to see our family doctor. Dylan woke up with a nasty green nose. According to Dr. W, Chris had the FLU and Dylan had inflamed lympnodes. Dylan got an antibiotic and Chris got Tamiflu.

Wednesday night, I went into quarantine mood. I sent Dylan to Nana's house. I had Chris stay in his room. I wiped down all of Cedie's stuff. I washed my hands whenever I went in to give something to Chris.

Unfortunately, the later it got Wednesday night, the more I started to feel bad. I was sleeping in Dylan's room but I couldn't get warm. It was a miserable night.

Thursday I barely managed to call Dr. John (my throat was killing me). He confirmed my fears, I too had caught the flu. He called me in some meds and told me to follow the instructions he gave Chris the day before: stay in bed, take Motrin and Tylenol for the fever, and STAY AWAY FROM CEDIE. I was beside myself. I can't not take care of my baby girl.... Well my body told me different. I was too weak to even try.

THANK GOD FOR GRANDMOTHERS!!!! AMEN!

I have nursing from 7a to 3p and from 11p to 7a. The 3p to 11p is when we are on our own- not usually a problem. However, with both of us on our deathbed (maybe a slight exaggeration) this presents a major problem. Lucky for us, we have 2 of the greatest moms ever!! Memaw came over Thursday for the 3-11 shift and Nana came over Friday for the 3-11 shift. I don't know what we would have done without these two wonderful women!

Happy Birthday!

Happy 24th Birthday to Aunt Mel-Mel
and
Happy 1st Birthday to our cousin Zackery.

Cedie Update

I've been so busy trying to get ready for Christmas that I forgot to post these last few days.

Any how, Cedie is doing great. She has been in the best mood since Saturday. She is so happy to be home!

Saturday Chris and Dylan went to Pargould, AR to vist with Chris' Great Aunt Betty, Great Uncle Rochelle, and cousin Stan. Unfortunately, after the hospital stay this past week, we have decided that Cedie is not leaving the house until after Chrtistmas and therefore she and I stayed home. We had a girls afternoon, watching a musical in mommy's bed :-) Luckily, Daddy and brother brought back presents! Cedie got a new Teddy Bear, Dylan got some toy cars, and Chris and I got a new mug set with some hot cocoa. Thank you guys! Sorry Cedie and I missed you.

Sunday Dylan had his Christmas program at church. It was really cute. Unfortunately, Cedie had to miss brother's performance. She and daddy stayed home and watched the new Pirates movie. When Dylan and I returned she greeted us with a big smile to let us know her feelings weren't hurt and she missed us :-)

Yesterday she had a make up PT session for the one missed last week when we were at LeBonheur. She really seemed to enjoy it. She was very cooperative, she smiled, and even laughed! She is really doing great with the independent sitting and her therapist is so proud. Later in the afternoon she had a TIPS session but she was kind of worn out from the PT session. Still, she played a little and didn't fuss too much. She helped Miss Debbie open the Christmas present we bought her. Afterwards, Cedie and Dylan played Peek A Boo with the tissue paper! It was really sweet to watch the two of them play together!

She had a great night last night. Her SAT monitor (measures her O2 saturations) broke but luckily she was doing so well (and had two great nights before last night) that we felt she could do with out it for one night.

We have an OT session this afternoon. Hopefully her great mood will continue right through that and on through the week :-)

Merry Christmas from Dottie

This is our dog, Dottie. She's our Jack Russell. (We have a rotweiler named Zeus too but his an outside dog). Dottie treats Cedie like her own. She is very protective of her. When Cedie's therapists come over, we usually have to put Dottie outside because she tries to keep them away from Cedie!

Anyway, we bought Dottie this Christmas outfit and I thought it was so cute and I just had to share it with you Cedie fans!

We Are Back Home

Hooray! Hooray! We are home WITH CEDIE! I was finally able to convience the doctors that we (her family and her nurses) could take better care of Cedie at home and she was less likely to get other bugs if she was in her own house.

They were able to wean her O2 back down to room air late yesterday afternoon. They never had to turn her breathing rate back on or increase her PEEP.

Apparently, thanks to the 3 RSV shots we have already gotten this RSV season, she has a mild case of RSV. This virus can (and usually does) do much worse things to these kiddos with weak lungs. They kept expecting Cedie to get worse but God was with her and knew we really needed her home for the holidays this year.

We were sent home with a warning that it could still get worse so we have to take it easy, monitor her closely, can't get her out, and we have to watch any sick people who might have contact with her.

Any how, we are so thankful for everyone's prayers. We thank God for making this a mild case and giving Cedie's body the strength to fight it so well on her own.

Also, big thanks to Evan's and Eva's mommies for the posts on their blogs that mentioned Cedie. You are both so sweet. I think this network of Cedie, Max, Eva, Evan, and Ben is so great. All 5 of these CHARGEr's are in the same age group and its neat to see how varied this most complicated syndrome can be through each child's story. I gain so much support from each of these families and I count them all as friends even though we've never met.

The Sweetest Big Brother

Dylan sure is missing his little sister. He was so upset Tuesday afternoon when daddy picked him up from school (usually mommy's job) and when daddy told him that sister was back in the hospital. Daddy had to bring him up there so that he could see that she was alright.

I got home late Tuesday night and Dylan was already asleep in the bed. Chris had taken him home earlier so that he could get in bed on time but I stayed to get Cedie settled in and to make sure she was asleep.

At 4am this morning I heard him screaming. I went to his room first but he wasn't there. I found him in Cedie's room, sitting in the middle of her floor, crying and screaming. I picked him up and asked what was wrong. He said someone took his sister. He can't find his sister. At this point I am crying as well. I remind him that we had to leave her at the hospital. He said I was supposed to bring her back home so she can sleep in her bed. It took a while but I was finally able to get him back to sleep.

Cedie: when you are older and your brother hurts your feelings in some way or he is mean to you, I want you to read this and remember that he loves you so very much!

Cedie is Hospitalized

Cedie had a good night last night. When she awoke around 6am she was smiling. Then around 6:30 (after her feeding) something changed. She started fussing and could not be consoled. We tried everything but she couldn't calm down and her sats kept dropping. We changed her trach out, gave an extra treatment, tried putting her back on a rate, and giving her extra O2. Finally, I got her to sleep around 8:45. By 9 I had her rate back off and she had stopped retracting and breathing fast. However, each time I tried to turn the extra O2 back off, her stas would drop. Then we tried to give her 9am feeding at 9:30 and the distress started all over again.

So, I called her pediatrician and her pulmonologist. Both docs wanted us in the ER.

Once we got to the ER, they started another IV (at least it was on the 1st try this time). They did all the usual tests/cultures and an x-ray. Her x-ray looked fine. However, her RSV test came back positive.

We had to wait until 6:15 to get a room in the TCU (we arrived at the ER around 10:30...). Believe it or not, her old room was available. She was not thrilled. The moment we rolled her into the room she started crying.

Her pulmonologist said she would probably be in a week, maybe two. However, the admitting ICU/TCU doctor said that if she does well over the next 24 hours and her cultures come back clean, then we can go home Wed or Thurs. Lets all pray the ICU/TCU doctor is right. Christmas is 12 days away and we really want Cedie home this year!

Growth Hormone Testing

Cedie during her testing (asleep)

Cedie after her testing (still asleep...)

It was not a fun day in the life of Miss Cedie.....We went to LeBonheur's Metabolic Lab today to get our groth hormone testing done. We had to leave the house at 7:15am. We were in our room by 8:30. It took from 8:30 until 10:30 and 3 different nurses, each with one try, to get an IV successfully done (the first two blew right away). Once the IV was in they took 5cc of blood for baseline tests. Then they gave Cedie two types of meds through her IV that are supposed to stimulate the growth hormones. Then every 30 minutes over the next two and half hours they gave and drew more blood from the IV. Thankfully it held throughout the procedure.

Cedie fell asleep around 10:30 (after they got the IV settled). She would wake up enough to fuss each time they came for more samples but then she'd go right to sleep. She slept on the way to the car, during the ride home, and most of the afternoon.

Feeling Better- New Teeth

Cedie had a better day yesterday and is feeling great today. She is back to her happy playful self. She has almost stopped coughing and there's no fever.

Cedie is getting two molars in on the left side. She has taken up grinding as a new favorite hobby! She also loves to bite mommy and anything else she can get near her mouth. Won't be long before she has a mouth full of teeth..... Now we just have to get her to use them on food and not mommy :-)

Definitely Sick

Cedie has had a rough few days.

When we saw the doctor on Wednesday, she was just coughing at night. The doctor looked at her throat, ears, etc and everything looked fine. She listened to Cedie's chest and heard just a little rattling. She wrote us a script for an antibiotic but had us wait 48 hrs to see if she got better on her own. (we were all hesitant to put her back on antibiotics because her stomach/bottom has just recovered from the last round).

She had another rough night Wednesday night. Then she was not her self all day Thurday. She coughed all day, was real irritable, and didn't want to play at all. She was real clingy.

She started running a little fever last night and had another restless coughing night.

I filled her antibiotic this morning and hopefully it will help turn things around. So far, we have not had to make any vent adjustments or add any O2.

Monday we go to LeBonheur for our 8 hour Growth Hormone testing.

Getting Sick- Again

Cedie has starting her coughing again. It is mainly at night and in the early morning. She coughed up a tiny bit of blood Tuesday morning but this morning there was quite a bit more.

She was going to get her RSV shot this afternoon anyway so her doctor will check her out then. Hopefully we can figure out where the blood is coming from, why she is only coughing at night/early morning, and how we can fix it. So far, it hasn't made her wheeze, need extra O2, or cause us to have to put her back on a rate.

I'll post back tonight after the doctor's appointment and let you know what they say.

6 Months Review Testing

Can you believe Cedie has been home for 6 months now? Time sure flies.

Tonight her TIPS coordinator did her 6 months testing. Here is the link to her first testing: http://cedielynn.blogspot.com/2006/06/monday-61206-developmental-test-today.html
The testing was bittersweet. She got a lot more "+"s than the first time but she still is not even to the 10 month old level (much less her corrected age of 15 1/2 months). We will get the official results next Friday.

During the testing, she surprized us by sitting up alot on her own. She was concentrating so hard, trying to figure out the tasks set before her, that she didn't even realize how well she was controling her body in the sitting position. I was beaming with pride :-)

Weekend of Firsts

Cedie had a great weekend. It was a weekend of firsts :-) Her first time to get in trouble, her first big girl bath, and her first trip to the movies.

Cedie is now 17 mths old and Saturday morning was the first time her dad and I ever had to get on to her. And as is typical of a 17 month old, she tested us :-) Because of all the equipment she is connected to (and because she is still so small in size) we have always given her a bath in the baby tub that is set on her changing table in her room. Well during her bath time Saturday morning (her nurse called in so I was giving her the bath by myself) she decided it would be great fun to splash. I don't mean a little splashing- I mean get the wall, the floor, and mommy soaking wet type splashing! I then notice the water stains on her walls- apparently this is not as new a trick as I thought! So, I told her no. Then I told her no and held her hands. Then I told her no, and spanked her hand. As I said, we have never had to do that before. At first she thought my attempt at discipline was funny. She continued to slap the water with her hands and her foot. Her dad then came into the room to see why I kept telling his little girl "no". He then did what I did, tell her no and spank her hand. This broke her little heart!! She gave us the most pitiful little lip quiver and then proceeded to cry. (we tried not to let her see us laugh) Never fear! We did not break poor little Cedie's spirit- she started her splashing again!

In light of Saturday morning's water fiasco, we decided to try Cedie in the big bath tub on Sunday. (see pics above) It was kind of tricky because we don't have a very big bathroom and we had to take (at least) the vent in there with us. Thankfully she didn't need suctioning while we were in there. Anyhow, we tried putting her in Dylan's old bath seat. She wasn't real sure about the whole thing but she did have free reign (and encouragement from mommy) to splash! It went pretty well.

Cedie saw her first movie at the theater on Saturday. Dylan, Cedie, Memaw, and I all went to see Happy Feet. It was a great movie! Very funny! Cedie seemed amazed. She even "danced" for a little while. Unfortunately, it was a 12pm showing and nap time won the fought within the first 30 minutes of the movie.

Overall we had a very good weekend!

Endocrinology Update

Because Cedie has not gained any weight since her discharge on 5/31/06 and has only grown 2cm in height, her endocrinologist did some preliminary growth hormone testing back on 9/18/06. He was also concerned that her "soft spot" is still very big.

They just got back to me yesterday with the results (I had called at least once a week since the 1st of October- but, because her case is so involved with a variety of all of her other problems, it took awhile for the Dr. to get it all together). Not surprisingly, her results were abnormal.

Therefore, he has ordered some more tests. On December 11th, we will check into the metabolic lab at LeBonheur Children's Hospital at 8am. We will have lots of blood work drawn testing a variety of different levels and we will be doing a test which will tell us more about her growth hormones (or lack thereof). We should only be there for approximately 8 hours.

Unfortunately, she will have to get an IV which never works out real well for her. Hopefully luck will be on her side that day and she will only have to get stuck once and the IV will last the whole 8 hours:-)

**As a reminder, the "R" in CHARGE stands for retardation in growth and development so this is not really abnormal for someone with this diagnosis.

Vent Update

We put Cedie on a PEEP of 4 today! This was our goal since our last pulmonology clinic. She has handled the dwindling PEEP like a champ!

She has not had to be on a breathing rate since 10/31. I can't remember the last time we have had to use any O2 (I think it was when we went to the ER last).

Her sleep apnea has gotten much better. In its place, however, she has these random bouts of her O2 sats dropping below 88 and then popping right back up to 98 or 99. Not sure what that's all about but we're (the nurses and I) not too worried.

It is so amazing how great she is doing. It is very heart warming to think that we are just moments away from our goal- being off the vent! We will go back to pulmonolgy clinic on 12/18.

When she got the trach placed back on 9/2/05, we were told she would only need the vent for 24-48 hours. Looks like they were off by only 15 to 16 months :-)

***Earlier, I was reading an article about one of Cedie's fellow Chargers named Alex (http://www.mailtribune.com/archive/2006/1130/local/stories/save_a_baby.htm). He just went through an ordeal like Cedie did back in August 2005. The article was so hard to read and it brought back terrible memories. However, it helps to remind me how much the vent (& trach) have helped Cedie through this year by preventing (for the most part) an episode like this from happening to her again. - Please keep Alex and his family along with all of the other amazing CHARGERS who have/ have had to fight similar fights in your prayers.

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!

Happy Halloween

These pictures were taken on Halloween 2005. Cedie was still at LeBonheur (discharge date didn't come until 8 months later). At the time, we still did not have a diagnosis and no one knew why she was having so many problems. She was a cranky baby at that time didn't much care that it was her first Halloween. The hospital gave her the bunny costume but she was always so hot and she could only tolerate it long enough for the picture.

These pictures were taken Halloween 2006! What a difference a year can make! Cedie got to spend the holiday at home - (unfortunately we could not take her out for trick or treating activities because the weather was yucky - and its RSV SEASON- we couldn't risk her getting sick when she is doing so well). Still, Cedie dressed up and got to help give out treats to our neighborhood kiddos! She loved her costume (at least how it tasted!!!).

Isn't she the cutest Tinkerbell ever???????? (and how about that hansome "Jack Sparrow" big brother of hers? :-)

I have more pictures of the kiddos in their costumes that I will post later :-)

Halloween Fun

Cedie had a busy Monday night. First at 4 she had her TIPS therapy session. We worked on sitting, taking blocks out of a container, and eating applesauce. We put the strawberry banana applesauce on a toothbrush and let her lick/suck it off. She really seemed to like it but she made quite the mess! It was all in her hair and on her tubing. At 5:30 she had speech therapy. She was really stuborn today and would not let us do much with her mouth. She did enjoy looking at some posters and watching us say the words and make funny sounds.
Her reward for all of her hard work during her therapies was that we let her "help" daddy and big brother with the pumpkin carving! I truely expected her to resist touching the insides of the pumpkin (at her age Dylan hated it) but she really went for it. She even tried to fit her head in it! Such a silly girl :-)