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 :-)

Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley.

Weekly CPAP Update

Cedie is still progressing on her CPAP trials. She is now resting (on her rate) every 4th night. We are still on track to have her last night on the vent rate be October 31st.

Last Friday morning she had a couple apnea alarms show on her vent. She was on her rate Friday night (as scheduled). Sunday morning from 4am to 5:30am she had 3 more. So, Sunday night I put her on an apnea monitor (we haven't been wearing it because Cedie sweats too much at night and the belt gave her a rash similiar to a heat rash) Monday morning her vent apnea alarm went off but not the apnea monitor alarm.

Monday morning I called her RT (respiratory therapist) and explained the situation. He came out to the house and checked all of her equipment. He explained that the vent would alarm after 3 seconds of no breathing whereas the apnea belt is a more normal 20 seconds. He said as her lungs get stronger she will slow her breathing down to a more "normal" rate. He had me call her pulmonologist just to let him know.

Her pulmonologist actually called me back personally. After I explained the alarms and told him how good she has been doing he said that she sounded like she was tolerating the CPAP well and we should continue to move ahead! He said he wasn't worried at all and that we were doing a great job! My gut was telling me all along that everything was fine but the confirmation was really nice. Back when she was in the hospital for all those months I was able to she what her "not tolerating" looks like on several occasions. She is soooooooooo much better, stronger, etc than she was earlier this year. It continues to amaze me.

Prayers for the Magnuson Family

Little Kate, a fellow CHARGEr, passed away on 10/21/06. She was only 2 years and 5 months old. She had a trach that she loved to pull out and so she had to be watched at all times. Tragically, she pulled it out one time too many and her parents weren't able to get it back in fast enough. This was a tragic accident. It just breaks my heart to know how much she must have fought and how much she had had to over come to get to be 2 1/2.

Please pray for this family as they go through this hard time.

* Cedie doesn't pull her trach out (yet) but she does like to take her vent hoses off here recently. She also likes to pull at her mic key button and anything else she can get a hold of.

Cedie's 1st Trip/Wedding

Saturday we took Cedie on her first trip out of town. We left Memphis Saturday morning and headed out to Jackson, MS (3 hrs away). One of our favorite nurses from LeBonheur (she was Cedie's primary week day nurse) was getting married and she invited us all to the wedding.

The trip there went really well. Cedie's alarms never went off and she seemed happy. She took a 45 minute nap and the rest of the time she was playing with her toy and looking out the window.

The wedding was beautiful! Nicole was stunning. She was so happy to see Cedie and she showed her off to everyone. Nicole and Cedie even danced to "I hope you dance" (very appropriate I thought). We all had a great time.

Saturday night we stayed at a hotel (another 1st for Miss Cedie). We brought her pack-n-play and all of her gear. It looked very much like a mini hospital :-) (I am still kicking myself for forgetting our camera!!!) She woke up a few times crying and she didn't want to let me go - I think she was scared b/c she didn't know where she was. Otherwise she did good.

We drove back home Sunday morning after a big breakfast at Shoney's (where Cedie sampled gravy, cheese sauce, and whipped cream). She handled the trip back as well as she did going there. - Such a big girl! And to think mommy was so nervous about how she would handle all of this.....

She is pretty wore out tonight but she is still doing great after such a big adventure!

1st Week Without Doctors!

Cedie is a few days past 16 months old and this has been her 1st week without seeing a doctor of some sort!!! Yay for Cedie!

(if all goes well, she won't have to see another doctor until 11/8!)

My Visit To Dylan's School

Tonight was open house night at Dylan's school. There I was, sitting in my big brother's lap in his kidergarten classroom. We were sitting in his seat where he sits everyday. Dylan took me, mommy, and daddy on a tour of his school. He was so proud! We got to see his classroom, his music classroom, and his art classroom. We even sat at "his" table in the cafeteria! I got to meet all his teachers and some of his friends. It was quite an exciting time and everyone could tell by the expressions on my face that I was amazed! One day this might be my school too!

Two More Teeth!/ G-Daddy's Girl

If you know Cedie's G-daddy, you know he LOVES computers. Well last night Cedie decided to check out what all the fuss was about. She, like her G-daddy, was very intrigued :-)
Also last night, we found something very interesting in Cedie's mouth... Two new teeth popping out! They are to the right and left of her two top teeth! You can just see the tips where they have broken thru. Now she has 6 tooth-ies (as big brother Dylan calls them).
(To Leslie the OT- maybe this is why we couldn't keep her thumb- and every other toy you gave her- out of her mouth during the session today!)

Weekly CPAP Update

Cedie went from Thursday morning until Saturday night with out having to be taken off CPAP. She rested Saturday night and then she went from Sunday morning until last night! She is doing so well and she is still as happy as can be!

As long as she keeps this up, the night of October 31 will be her last night on a vent rate! That means she will be breathing on her own all the time!!

You can do it girl- mommy has tremendous faith in you!

Physical Therapy = Fun with Music

Cedie is doing well with her physical therapy. She is rolling a lot more, she doesn't hate tummy time anymore, and she is getting stronger with her sitting (we are almost there!). Saturday morning, during her PT session, Cedie got to play with maraccas and her new keyboard. She had lots of fun!

Gastrogram Testing at LeBonheur

We had to wake Cedie up around 5:30 this morning in order to get her ready for her gastrogram. We had to be downtown at LeBonheur at 8. Our doctor ordered this test due to increased refluxing and pain Cedie has when she eats sometimes.

It was very chilly this morning so Cedie got to wear a jacket for the first time ever - (she was in the hospital all last winter). She looked so cute in her first jacket so I had to take her picture while we were waiting to check in.

*It didn't occur to me until we were walking into the hospital that my child was doused in pink! She had her pink bow, jacket, and jeans (her shirt was purple). Her white shoes have small pink and purple flowers. Her diaper bag is pink, as is her emergency bag! Before I had her, I swore I would not be one of those moms that put their girl in pink- Look at me now! I can't help that she looks so cute in pink!

Any how, back to the test. They gave her her normal volume-130 cc- in (pink colored!) barrium through her g-tube. As she was taking in the barrium, the radiologist watched its progress in her stomach. It was kind of neat looking. The doctor was looking to make sure that Cedie's nissen was doing its job and not letting the barrium go up her esophagus (risking aspiration). From what they could tell, the nissen was indeed still intack and functioning properly. This is a relief for sure.

RSV SHOT- 1st Dose

Cedie got her first RSV shot today. This shot costs $1,000.00 and only children with respiratory issues or severe immune system issues can qualify for this shot. She will get the shot once a month during RSV season (October-April).

For more information on RSV, visit http://www.rsvprotection.com/what_is/what_is.aspx

Cedie handled the shot very well. Ofcourse she cried when she got the shot but she was easy to console and she never developed any fever or rashes.

CPAP Update

I have to admit that I had my doubts when we went to the pulmonology clinic a couple weeks ago and they decided to increase her CPAP to 24/7 over the next six weeks.

However, Cedie is doing AWESOME! She is currently doing 36 hours, 12 hour break, 12 hours, 12 hour break, then back to 36 hours! Later this week we will try cycles of 48 hours with a 12 hour break.

She acts like its no big deal! I think she is tired of all these hoses holding her back. She is ready to be on the move!

The trick is to keep her healthy so her lungs can grow stronger. We will be getting our first RSV shot tomorrow (she gets them once a month Oct-Apr).

Baptist Women's Hospital NICU Reunion

Here I am sitting on the throne with Prince Charming and Cinderella.
Ummm, Excuse me but according to my daddy & big brother,
I'M THE PRINCESS!

"Mom, what is going on here???" I like the yellow though....

Saturday we went to the annual Baptist Women's Hospital NICU Graduates reunion (held every October). Cedie was born at BWH and stayed in the NICU until she was transferred to LeBonheur at 6 weeks of age. She missed last year's reunion because she was still at LBCH.

It was a neat party. There was a Disney theme (thus the pictures above). We saw one of her old doctors and a couple of the nurses. They did a mold of her foot for us to compare with the one done at 2 days old. There were refreshments and games. Each child wore a sticker with their birth weight on it. It was neat to see all the big kids who started life at 1 or 2 lbs.

Since this is the beginning of RSV season, we did not stay too long. It was a neat expierience though and we hope to go back each year.

Cedie's Big Day at the Office

Thursday I had to make a trip to the office and since they were working on my house, Cedie and the nurse came along to "help." Cedie particularly liked answering the phones :-) (it is her daddy on the other line)

Update on my eyes!

The posts are a little off this week because Cedie and I had to keep switching houses (due to our flooded floors repairs!). I am happy to say that all the work was completed Friday afternoon and us girls were finally able to come home to our own beds!

Any how,

Wednesday Cedie had an appointment with her opthamologist. And Guess What.... They believe Cedie's eyes and eye sight are improving!!! We are going to put off talks of surgery for another four months and give her cute little brown eyes a chance to get even stronger!

YAY CEDIE!

Tradgedy at First Church in Memphis

At 3am this morning, First United Methodist Church, the oldest church in Memphis/2nd oldest building, caught on fire. The fire started in the basement. The building was quickly consumed.

This is the same church that we took Cedie to back in August. (See link : http://cedielynn.blogspot.com/2006/08/81306-birthday-reception-at-first.html ) My great grandmother has been a member of this beautiful church for over 50 years. My parents were married inside this church. This is also the church where my sister and I had our Christening as infants. As a little girl, my grandparents and my great grandparents would take me to the church often and I even sang in the children's choir.

Besides our personal memories of the church, First Church has an incredible history of its own. See link: http://www.firstchurchmemphis.org/history.html In the sanctury, there were these hand sewn pillows that depicted scenes from the various events throughout the church's history. I always found the pillows facinating and always looked forward to looking at them again each time I visited the church.

As a result of this fire, 3 other historic downtown Memphis buildings caught on fire. Luckily, all 4 buildings (the church included) were vacant at the time and no one was hurt. It took over 250 firefighters with 50+ fire engines to get the fires under control.

PLEASE pray for all those who were affected by this great disaster.

Yummy Chocolate Pudding

During our TIPS session on Tuesday we introduced Cedie to chocolate pudding. First we tried feeding it to her with a spoon. Then we put it on a tooth brush to see if she would tolerate that better. Finally we just let her put her hand in it and eat it as a finger food. She wasn't quite sure of that! Overall she handled the new texture and new taste well. SHe sure made a mess though!

Baby Dedication at Elendale Baptist

Cedie was dedicated during our Sunday morning service at Ellendale Baptist Church*. She recieved a certificate and a small pink Bible signed by our pastor. During the prayer she decided to snack on her dress (see 2nd to last pic). Her LeBonheur TCU physical therapist attends our church and was happy to see Cedie dedicated (see pic #3). The first pic is of Cedie's Godmother, her husband "Uncle Tre", their son- Dylan's best buddy Grant, and us.

*"baby dedication" is where we as parents dedicate our child to God. We make a public promise to raise our baby in a Christian home and do everything we can to help our child grow as a Christian believer.