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.