If It Could Go Wrong.... Kind of Morning

In these pictures Cedie is wearing my tank top. She wore it at her doctor's appt this morning. Here's the story of how we got to this point. (get a drink & get comfortable: its a long one)

It was an "if it can go wrong, it will" kind of morning. We had a 9:30 appt with the Optomitrist downtown. I had asked my night nurse to feed Cedie around 5 (instead of 6) so that we could give her 9am feeding at 8:30. Cedie woke up with that 5 am feeding but she took the feeding well and seemed to be in a good mood. Her morning nurse was a little late so we didn't get to feed her until 8:45 and then we had to close her button and put her in the car.

Normally, she loves riding in the car. However, this morning, she started screaming (not easy to do with a trach/vent)the moment we put her in her car seat. I thought she would calm down as we started off but that wasn't the case. We had to pull to the side of the road twice to suction her. We then decided maybe it's her stomach again so I asked the nurse, who was sitting in the back next to her, to open her button up. Normally, if it was just gas, a couple bubbles would pop up and she would feel better. Normally, its more noise than substance. This time her stomach contents shot up out of the tube and went everywhere. It was awful! It was all over Cedie, the nurse, the car seats, and everything else! It had that same strange odor that I noticed yesterday. And she was still crying. By that point we were already there. We got her out and cleaned her off.

Everywhere we go, I have to take a minimum of three bags- diaper bag, suction bag, and emergency bag. In these bags I have every thing I would need for any emergency. Yet, today, there wasn't any spare clothes! The clothes she was wearing were soaked and they smelled horrible! So I improvised. Cedie always carries around my shirts (a tradition we started in the hospital). Today she had my spaghetti strapped tank top. I tied it in the back and it became a halter dress!

Her exam took 2 hours because she was so sleepy from the trama of the morning thus far. She didn't want to open her eyes for them! They were able to determine that her vision in her right eye is normal for her age. Her vision in the left eye is significantly less. Our options were to either to get a contact for her left eye or get glasses. However, the doctors decided to give her eyes another 6 months. They felt like the two correcting options would not be easy with her at this age and they hope that with some exercises that we can strengthen the eye on our own.

Then, we get ready to go and we see that it is pouring down rain! This place did not have a drive thru awning. So, I pulled up the car as close to the bldg as I could. We unhooked Cedie so that she and the nurse could jump in the car without getting too wet. By the time I got her 3 bags, the vent, the marine battery & the O2 tank into the car and took apart the stroller and got it in the trunck, I was SOAKED!

Finally, we are on the way home. Cedie is in the back laughing (yes LAUGHING) at the rain on the back window. I am freezing because I am soaked but Cedie gets so hot so I have to keep the air on. The car smells like vomit and the nurse and I both havce headaches. Half way there, my gas light comes on! We made it home though.

I called Cedie's doctor about the stomach issues. She thinks its a stomach virus that has been going around and she called in a RX order to increase her Zantac dosage.

Cedie didn't take a nap. She fell asleep about 5:30. She pretty much slept the rest of the night but she wouldn't let me put her down until 10:30. Each time I tried, she tightened up and started screaming.

Hopefully she will be better tomorrow.

Stomach Bug???????

Cedie didn't feel very good today. She seemed ok between feedings but she didn't tolerate her feedings well at all. Each time we fed her, she acted as if she were in pain. She was very gassy. She refluxed alot and if her nissen would have allowed, I am sure she would have been vomiting. Each time we opened her tube for a feeding, there was a residual (never happens under normal circumstances) and it had a strange odor and color. I am hoping it is a stomach virus and not something to do with her button placement. We will see how she does in the next day or so.

Lil Miss Social (8/26-8/27)

Picture taken Sunday Night, 8/27/06

Saturday Cedie went to her first pool party. It was at Rachel's (her Godmother) neighbor's house. There were lots of kids ranging from 1 to 5 years old. I think she really enjoyed sitting in the shade, watching the kids play in the pool. When it was dinner time, she ate some of my deviled egg! There was another sweet baby girl there that is close to Cedie's age. She was eating ketchup. I thought Cedie might like to try it but boy was I wrong. She is not a ketchup kind of girl! After dinner, we went back to Rachel's house and watched the race (NASCAR at Bristol). We laid Cedie on a blanket and she immediately passed out. She was exhausted.

Sunday morning we took Cedie to church. After church we went to Memaw's house (Chris' mom) for lunch. There were lots of family there and Cedie entertained them with all of her little noises :-)

Our nurse was unable to make her shift today but Cedie was nice enough to take a good long nap after such a busy morning.

Sunday night, our church had a surprise reception for Pepaw (Chris' stepdad) following the evening service. During the service, Cedie kept "talking" to me and playing with my bracelets (who could tell such a sweet angel that she's supposed to be quite?). During the reception, Cedie was so great. She was very social. She smiled at people and never fussed about being in her stroller. I got her a couple of crackers off the buffet (boy do Baptist know how to put on a spread at a party- there was a ton of food). She gnawed on the crackers like a big girl. Everyone kept remarking on how great it is that she's eating (actually she is really just chewing, we haven't really got the swallowing down). Anyhow, it was great to see her adjusting so well to an unfamiliar situation. She acted as if we do this all of the time. I was so proud of her!

I took the above picture once we got home. She was really wired from all of the excitement!

Big Adventures/Pressure Garment In

What adventures we had today!

First, we went in to the orthotics & limbs place to pick up Cedie's new pressure garment. She was measured a couple weeks ago. This is supposed to flatten/smooth out the scars on her arm from her IV burn/skin graft. As we were waiting, we put Cedie on the doctor's table. She had a blast with the paper! I snapped the top 3 pics while everyone- from our nurse to the doctor & his office staff-were laughing at our silly girl!

Next, we were off to LeBonheur to meet with the wound care specialist to make sure the pressure garment was the right fit and to get our orders. On our way in, we stopped at the front drive where Greg Biffle's #16 car (NASCAR Driver) was parked. Cedie had to pose for a few pictures (dad and brother were so jealous).

The wound care specialist said that Cedie's circulation will adjust in the next few days (the garment is so tight that it turns her hand blue and makes it swell). We are to start with wearing it one hour and have it off one hour for today and leave it off tonight. Tomorrow we will increase the time on as tolerated. The goal is to get to 23 hrs on and one hour off per day :-( Worse than that, she will have to wear it for 9 mths to 1 year. I was really hoping it would not take that long. I guess it will be just one more thing we will get used to. Its like the g-tube, the trach, and the vent- its scary now but soon it will be just a part of life.

Anyhow, we didn't let this news stop our adventures. Next, Kim (her nurse- also a TCU nurse) and I took Cedie to her first resturaunt. We 3 girls had lunch at Applebees! To celebrate, I ordered Cedie a special desert to try. Unfortunately, she was so wore out from our big day thus far that she fell asleep before they served us.

As I was getting her ready for bed tonight, I realized that in all of these pictures that I took today, I forgot to show her new garment. So I took the last two pics shown above. It was funny b/c she wasn't smiling at first, but when she realized mom had out the phone camera AGAIN she gave me one of her cute silly smiles!

8/22/06- TIPS Session Fun

During my TIPS session, I played a new game. Ms. Debbie had this neat cookie jar that makes noises. There were different shaped objects in the jar. Mommy kept putting my hands in the jar so I decided to explore.
After a few minutes of touching, I decided to take a closer look. (At one point, I had my whole arm in and I was actually licking the rim of the jar, which made mommy laugh)
LOOK! I got one! Ofcourse I immediately had to taste my catch :-) I later "caught" two more! Mommy says this is great for my development! Next will come putting it back in.
After all my hard work, I got to have one of my new favorite things.... grahm cracker sticks! Mommy gave me two, a chocolate one and a cinnamon one. I held one in each hand and alternated licking each one until I made a big mess!

Later, me, Dylan, Mommy, Daddy, and Dottie (our dog that stole one of my snacks earlier today!) went for a walk around our neighborhood. I enjoyed it very much and I let them know by my smiles, coos, and I kept lifting both feet up :-)

8/18-8/20- A Little Under the Weather

Cedie has what I hope is just a little cold. She ran a little bit of a fever on and off all day Saturday. Her nose was running a lot all weekend- however, it was clear (not the yucky green stuff). She has also has a little cough. Her trach needed suctioning a lot more often as well (thankfully those secretions were clear too).

Dylan's nose starting running the same clear mess on Friday (he started it all :) ) and I had a sinus headache all day Saturday. Chris' sinuses started giving him trouble Sunday night. So Cedie's not alone... We use TONS of Purell and antibacterial soap but we still can't seem to not share our bugs :-( We will just blame it on Memphis weather!

Hopefully we will all clear up soon and hopefully it won't cause Cedie any major respiratory distress- she has been doing so well.

8/17/06-Pulmonology Clinic

We were at LBCH all day today. Cedie had a 9:30 appt with her pulmonologist. He was impressed with how well she has been doing. He did have a couple concerns though. They weighed and measured her and there has been no change since we were there in the beginning of June. Also, he believes that her kidney and spleen are too large. He ordered a nutritian consult for the weight problem. He thinks the kidney and spleen are results from a bad heart (the cardiologist disagrees and says she doesn't have a very bad heart).

The dietician is hesitant to increase her feeds because Cedie is on the high side of the curve for her height. She is going to discuss the matter with our pulmonologist and then get back with us on the decision. She also suggested we talk to an endocronologist about the growth issue- we already have and he wants to concentrate on her thyroid issues at this point because at her age brain development is more crutial.

On a more positive note, he gave us the green light to increase CPAP trials. Over the next 6 weeks, our goal is to get her to do CPAP all day (12 hours) and be on the vent rate at night. We will then meet with him again and discuss bringing down her PEEP and attempting trach trials (being completely off the vent).

We also had to go by the lab and get some blood work drawn. Cedie ofcourse hated that but she got over it so quickly. Such a brave girl!

Before we left we stopped by TCU and saw some of our old friends. Everyone was happy to see her and remarked on how beautiful she is becoming. They told our nurse how "scary" Cedie used to be and how she has come such a long way. Everyone is so proud of her progress.

Prayers for My Great Grandpaw from Cedie

My great grandpaw, Charles Robinson, is having major surgery today in St. Louis, MO. He has been sick lately so we hope all goes well.

Daddy, Mommy, Dylan, and I all wish him well and we will be praying extra hard for him today.

A Sweet Day For Me

Today I had my Physical Therapy Evaluation. I had to do a test that took a little over an hour. I tolerated it very well. This was the last evaluation so my therapies should be starting soon (hopefully next week).

I had my TIPS session immediately following the PT eval. Even though I was wore out from the PT tests, I was a good girl and attempted everything Ms. Debbie had for me to do. In fact, I was so good that she brought me a new sweet- Whipped Cream in a can! I throughly enjoyed that! She put it in my hand and let me find the way to my mouth on my own. Mommy and Ms. Debbie cheered me on as I "fed" myself the yummy stuff.

Then, when I thought it couldn't get better, mommy brought out the Oreo! Mommy was so excited because she has never seen me so excited about a food. I actually managed to eat one whole side of the cookie! And, I did it with a smile and almost no spitting :-)

It was a very sweet day for me!

8/13/06- Birthday Reception at First Church

Alice "Bubba" Warren held Cedie while visiting with her guests
This is Bubba (Cedie's great great grandmother), Cedie's 2nd cousins Dalton and Tarrah, and big brother Dylan in the front.
Bubba and Cedie on the same stage that mommy and Nana ran on as little girls.

Here's Cedie again with Dalton, Tarrah, and Dylan.
Cedie and Nana
Bubba holding Cedie with G-daddy watching. (see the bow in her hair? that is actually tied onto her hair!!!!)

Today Cedie's Great Great Grandmother's church had a birthday reception in honor of her 95th birthday. It was First Methodist Church in downtown Memphis. It is one of the oldest churches in the area (it was around in the 1800s!)

It was a really nice reception and I know Bubba loved showing off her grandchildren (Nana and her brother), her great grandchildren (myself, my sister, Tarrah, and Dalton) and her great great grandchildren (Dylan and Cedie).

It was also neat to show off Cedie to this special church group that has had Cedie on their prayer list for over a year.

After the reception we all went to Bubba's house for a visit. It was a very nice afternoon.

8/12/06- When did my hair get so long?

I get told all the time that Cedie is getting so big but its harder to tell when you see her every day.

However, as I was getting her ready this morning and brushing her hair I noticed something. My baby girl's hair is getting long! When did that happen? :-)

I decided to put a white headband with a pretty pink bow on to match her pink and white 24 Jeff Gordon outfit. Notice on the pictures from behind that you can NOT see the headband? Her hair covers it all up! I was so impressed that I decided we just had to do an impromptu photo shoot! Hope you like the pictures!

Friday, 8/11/06- Peanutbutter, Anyone?

As you all know, we are trying really hard to find anything that Cedie will be encouraged to eat orally. So far, we know she likes banana pudding and cake icing. Nurse Joan tried strawberry jell-o with her on Thursday and Cedie seemed curious about it (very new texture).

This afternoon, I was eating some peanut butter crakers (the round kind that come in a package of six). I was sitting on the floor beside Cedie and talking to her about her day while I was eating. She kept waving her arms, kicking her feet, and making noises at me. I finally figured out that she wanted what I had- the crackers!

First I gave her a whole cracker. She put it in her mouth and bit down. She got a big chunk off but she immediately spit it out. So then I took the cracker apart and let her have the side with the majority of the peanutbutter on it. She loved it! She licked it all off. Then she did the cutest little smacking thing for the longest time- I guess it was all stuck on the roof of her mouth!

Wednesday- 8/9/06- Opthamology Appointment

Cedie had an appointment with her opthamologist this morning. It went surprizingly well. Ofcourse she didn't like it when they put the drops in her eyes to dialate them or when the doctor did the actual eye exam, but she handled it well. I had the O2 tank ready, in case she decided to turn colors on us (like she would have done in the past) but it wasn't needed. Such a big girl!

Her doctor said that "structurally" her eyes are good and therefore she should have good vision. We will see an optomitrist next Tuesday to have a low vision and a functional vision evaluation done. Her doctor did say that we may have to discuss surgery on her eyes if they don't stop wandering soon. She is going to wait a little while on that though. Hopefully, her eyes will grow stronger in the meantime. We will go back in 6 weeks.

On another note, TODAY WAS DYLAN'S FIRST DAY OF KINDERGARTEN! I couldn't believe the day had come as Chris and I walked Dylan into his new school and then into his new classroom this morning. I was ready to cry but Dylan was ready to get started. I think he told me bye three times! He was so excited when I picked him up this afternoon. He loved it and can't wait to go back. (he will start full time next Monday) He even drew Cedie a picture during Art. His teacher wrote us a note telling us what a great day they had and how good he was. I am so proud of my BIG boy!

Tuesday, 8/8/06- Good Therapy Session

We had great TIPS session today with Ms. Debbie! Cedie showed off some of her new tricks- such as her rolling, pulling up from a leaning position to an "in-line" sitting position, and her "talking". She even did some of her baby push ups that we have been working so hard on. We played with the alligator musical toy and added a new tamberine. We also tried a game of roll the ball to mommy. Finally, we sat her in front of a large mirror. She wasn't quite sure about that!

She tolerated it all very well. We bored her a couple of times but overall she was very cooperative.

Ms. Debbie said she was very impressed with how well Cedie is doing.

Pictures from this weekend

Passed out after a long day of fun, wearing the t-shirt her Me-maw got her in Florida.
Cedie was thinking really hard about which toy she wanted to play with first.

Cedie is Getting Mobile

We all went to eat at Nana's house tonight. During super we put Cedie in her pack-n-play but she didn't like it because she couldn't see us. So, we layed her down on a blanket on the floor. The rest of the time was spent putting her back on the blanket! She was determined to NOT stay in that one spot. She would roll and scoot, roll and scoot. It became a game and it kept
all of us laughing.

SPAMMERS HAVE FOUND US

Spammers have found this site. If you see a comment on one of my posts that say "Here are some links you may be interested in..." DO NOT CLICK ON THE LINK. It is spam and it can mess up your computer.

In order to try to detour these people, I have blocked "anonymous" comments. I am sorry if this is an inconvenience. Please do not let this stop you from leaving comments. As I have said before, I am keeping a hard copy of all this and I know it will mean so much to Cedie one day.

Happy 95th Birthday to My Great-Great Grandmother

From Cedie-

How lucky am I!!!! I am one of the lucky few who can claim the most amazing Great Great Grandmothers around today! She is my mommy's mom's mom's mom! She is the most inspiring woman in the world. Anyone would be lucky to live a life like she has.

Bubba (my great uncle gave her the name) came to see me atleast twice a month during my stay at LeBonheur. She even came out to my house the weekend after I came home!

As you can see in the picture above (taken at her birthday dinner at my Nana's house last Sunday 7/30/06) I love being in her arms just as my mommy and my Nana did when they were my age!

I could go on and on about how AMAZING this woman is but instead I will just say a quick prayer thanking GOD for letting her be in my life and say

HAPPY 95th BIRTHDAY!!!!!

We love you!

Thursday 8/3/06

Cedie did something scary and yet amazing this morning. She was in her bed. Her brother was in her room too. I was in my room getting ready for work and her nurse was preparing Cedie's 9am meds and food. We heard Cedie start to cry LOUDLY. We both rushed in and saw that she was just mad in her bed. However, we knew the cries were too loud so the nurse checked under the trach ties (yes they were properly attached) and sure enough somehow the trach had come out. We grabbed a new trach out of her bedside emergency kit and had it replaced in seconds.- That's the scary part.

The amazing part- Cedie was still on her O2 sat monitor. It did dip down as low as 78% right before we got the new trach in but it jumped right back to 99% as soon as we put the vent circuit back on! (before, this kind of ordeal would have required increased O2 and a recovery period) This just goes to show that Cedie (and her lungs) is getting much stronger!!!

This episode gave us a renewed hope that one the vent could be a thing of the past!

Wednesday 8/2/06- Dr Appt

Today we saw our pediatrician, Dr. Best. She was really impressed with how well Cedie is doing. She thinks Cedie looks bigger! We discussed the ENT findings of last week and the thyroid developments (we found out yesterday that her thyroid meds have to be increased). Overall it was a good appointment. We don't have to go until the first week of Sept.

While the doctor and I were talking, Cedie was laying on the patient table on the paper. We were standing right by her with our hands ready if she were to decide to roll off. When we were finished, I looked at Cedie and noticed something strange in her mouth-a wad of paper from the table! The silly girl had rolled to her side, managed to get the paper wet enough to tear, and had torn a piece right out of the middle for her to eat! She looked so innocent while smacking on that paper. The doctor and I laughed so hard! She said that it looks like we would have to have the "houseproofing" talk at the next appointment! What a big girl :-)

Tuesday, 8/1/06- Busy Day

It was a busy day. First, this morning we went to get measured for a pressure garment for Cedie's arm where she had the skin graft (see posts back in May). Her skin is starting to really scar up and it is very "bumpy" - for lack of a better word- so her doctors feel like a pressure garment on top of a silicone padding will help smooth out the area. It should be in within a week to 10 days.

Next we went by LeBonheur to pick up the special meds that Walgrens can't fill. While we were there we saw one of our favorite nurses- Ms. Nicole.

At three, Ms. Lisa- a speech therapist- came by to do a speech evaluation. Cedie blew her kisses and even "talked" to her a little. She feel asleep towards the end of the hour though.

At four, we had our TIPS session with Ms. Debbie. Today we worked on baby massage and its benefits. She even brought a DVD that showed me, step by step, how to give Cedie a massage. Cedie seemed to really enjoy it (which was a little surprizing). The DVD warned that babies often do not like it at first, but my little angel knows a good thing when she feels it :-)

At 6:30 my sister-in-law, Debbie, and my mother-in-law came by to talk about Mary Kay. Cedie was a good girl during the visit and she even showed off a little for them. It still amazes me how social she is despite all that she has gone through.

Cedie was so tuckered out after all that. She went to sleep before 8 and did not wake again- not even during her 9 pm feeding or getting ready for bed.