Kaitlyn's Birthday - 4 years old

I wonder if you need a license to drive this? Wait, do they give a license to 4 year olds?I can do it by myself - ski ball at Celebration Station
Whoa Daddy watch out for that tree!!!
Hold on Kaitlyn we are going to crash!
That was so much fun!!!

Kaitlyn turned 4 today - July 26th! Yesterday she had friends to the Little Gym of Greensboro for F-U-N Cheerleading plus gymnastics, cake, and presents. It was a blast. Today we awoke and took her to breakfast at Biscuitville, church, Celebration Station and then had my parents, mamaw and papaw, his mom, and neighbors over for cake and icecream and more presents. She absolutely loved the umbrella that my parents gave her. She has been begging for her own now for quite some time. She also got a big girl bike from us with a new helmet from her Nana. We ended the day spending it with her friend Hadley as they rode bikes in Hadley's neighborhood. Such an eventful birthday.

ER times 2 in one night

Wednesday, July 23rd Kyleigh went to Duke to have tubes placed in both ears due to recurrent ear infections. The procedure went well and we came home by noon the same day. It seemed that we were in the clear. Thursday she took a very long nap which is great but somewhat unusual considering it was 2.5 hours in length. I began to suspect she wasn't feeling well or about to hit a milestone as they will sometimes do when babies sleep more. That evening around 5 pm (7-24-05) she was fussy and I thought she may be preparing for an early bedtime. I gave her a bottle and placed her in bed while starting her nighttime meds that included ear drops. After placing the first set of drops in her left ear and turning her over to place them in the right ear she began crying. I looked and saw bright red blood coming out of her left ear as if it was a fast nose bleed. I was so scared. I do not do well with the sight of blood coming from my children.

I immediately called the pediatrician office since it was close to 5pm hoping they could see us still right away. The emergent nurse was great and helped talk me through the situation. After applying a wash cloth to the ear for 10 minutes the bleeding appeared to stop. The nurse indicated I should call the ENT at Duke for further instructions since Greensboro Peds was closed for the day. I called and spoke to the ENT on call at Duke. Dr. Miller said it sounded like she may have just had some blood in there from surgery and pressure may have built up and released the blood. He said if it returned to call back but in the meantime give her Motrin for pain relief. I gave her Motrin and she lay in bed cooing and playing until she fell asleep. She slept about 20 minutes before waking me with a shrill scream cry. I returned to her crib to find a small pool of blood under her left ear the size of a nickel. It was still bleeding. I called the ENT back immediately and he informed me to get her to the nearest pediatric ER to be seen. This is Moses Cone Hospital so we loaded up and headed that direction.

They got us in almost immediately and the doctor in the pediatric ER came in within the 1/2 hour of our arrival. She was very concerned because she could see the tube in her right ear but the left ear seemed covered by blood. So she had a nurse come in and they suctioned out the blood from her ear with a catheter so she could get a better view. Unfortunately, the blood began to fill the ear canal within minutes of suctioning it out. This was not a good sign. Her ear drum looked "funny" according to the doctor and the tube was no where to be found at this point. The doctor contacted Dr. Miller at Duke to get an idea of what would be best for Kyleigh.

At around 9pm the doctor came in to tell me that Kyleigh needed to be seen at Duke by the ENT doctors there and it would be best to have them conduct a CT scan at Duke to look for the tube and be prepared for taking care of any repairs needed. The policy is when transferring a child from one hospital to another the patient must go by EMS. So an ambulance was called for transporting Kyleigh from Moses Cone to Duke on Thursday night. Thankfully, our friend Kristen was there with me and was able to help me call Dennis to tell him to prepare for the trip. Then Kristen went and spent the night with Kaitlyn so we wouldn't have to wake her from sleep. Dennis headed for Duke and I waited patiently for the EMS. The EMS didn't show until 11:30. We were loaded in the ambulance and on the road by 11:50 and within 30 minutes we were pulling into the Duke Emergency Room parking lot. Wow--talk about a fast drive.

Backing up a little in the story, I had to go to my car to get the car seat base for the travel in the ambulance so that she would be as safe as possible. The parking lot at Moses Cone is SCARY at 11:40 at night. A man was leaning on the hood of my car as I approached the parking lot. I hit my alarm button and he staggered up and away to a few cars down. I was petrified but on a mission to get the carseat out of my car and back to my baby girl that needed me. Needless to say it all turned out fine but whoa---I was so nervous.

Dennis was at Duke when we arrived. We were taken straight to the pediatric ER and the ENT doctor met us there to look in her ear. He had to suction out more blood and use a special tool that located the tube in her left ear. Kyleigh was screaming and crying and it was tearing my heart apart with each cry. The doctor stopped the examination and determined it would be best to admit her to the hospital for the night and schedule an exam under anesthesia and prep for surgery in the morning. So we began the long journey of watching her get an IV and prep for staying the night. We were in the ER until past 4 am until finally transferred to a room upstairs on the children's floor. We arrive to our room and of course they have to examine Kyleigh and we had paperwork to complete. It was almost 6 am before we were left alone to lay down on the small chair that pulls out for a bed. Kyleigh was not resting well at all. I was up and down every 5 minutes. Finally around 7am they gave her morphine in her IV for pain and she settled down. We were able to get a few moments of rest, not real sleep because it was not possible. Then the doctors came in on their morning rounds to check her. They said they would be back to take her to surgery soon.

Around 9am the doctor that did the tubes on Wednesday came in after being alerted that Kyleigh was admitted to the hospital. He came in and examined Kyleigh's ear and said the blood there and he could see the tube and it looked in the appropriate spot. The blood was a clot that is behind the ear drum and around the tube. He said that given another antibiotic ear drop and time the blood clot will dissolve and she will be fine. This means be prepared to see more blood come out of her ear at some point and time. Until then we will see the doctor again on August 5th for a recheck at the Cleft Palate team review. If she begins running a fever or has prefuse bleeding then we should call immediately. The surgery was postponed and we were discharged by 11 am and heading home.

Such an exhausting 24 hours but so thankful that it is only a blood clot and not a perforation of the ear drum or a problem that would cause future harm for her hearing. During the day on Friday Kaitlyn stayed with Kristy and Kaitlyn. We had so many friends call and send messages of hope and prayers. We thank everyone for standing by our side when times get tough. It means so much to know we have people we can count on. I only hope that Kyleigh continues to move past this moment and her ear continues to heal.

Of course the thing I learned the most is you can't assume that any procedure is going to be "easy" when it comes to my little girls!

Back to Square One

So the interview didn't go so well and the county is pushing for a full-time person to take the position. That doesn't help me out very much considering the whole purpose was so I would have flexibility in my schedule to take Kyleigh to school, appointments, etc. Unfortunately, this has brought us back to the unpopular decision of me working full-time. I am very disheartened by this decision and now can only pray that God will put the right caregivers in our path to watch over our angel while we are working. Please help me use discernment deciding the correct person(s) to watch her while I am working. Also pray for me that I will come to terms with this decision and live in peace knowing that what doesn't kill me will make me stronger and God will take care of my family.

On Wednesday, Kyleigh will go in for tubes in her ears. I'm actually looking forward to this appointment as I believe it will make the world of difference in how she feels. She has had too many ear infections and has been living with fluid just sitting on her ears. That can't be fun. Pray for her and the doctor that it will go as smoothly as I have been told that it will for her sake. We do get to come home on the same day this time --- woohoo!!! We don't have to spend the night at Duke---yippee!!!!

Changes

So after much deliberation, prayer, tears, discussion, weighing of pros and cons--however you wish to view it--Dennis and I came to the conclusion that me working as a full time classroom teacher was not in the best interest of our family or the students I would be teaching next year. Therefore, I am taking a year off from teaching but pursuing 1/2 time employment so that I can still support our family financially as well as have flexibility for taking the girls to the doctor and all of their many appointments.

Tomorrow (Monday, July 13th) I have an interview scheduled at 12:30 pm for a potential 1/2 time position within GCS. This position is as a curriculum facilitator. I am excited about the possibility of this position and the change that it brings for myself and my family. However, I am also very nervous about the interview and the possibility that I may be up against other very qualified individuals for this job. It would be so great to know after the interview that this position is where God has led me for next year and that all will be well for us. And if I don't get this position, then I pray God shows me the path I need to take so that I can quickly resolve the anxiety of being financially stressed.

Please pray for me in the morning as I prepare for this interview. Pray for me at lunch while I'm at the interview. Pray for me after the interview that I will have patience and await a response. Pray for Dennis as he stands beside me (metaphorically speaking) during this season of change. Just pray! Thanks everyone.

Kyleigh Update

This week Kyleigh went to see the ENT at Duke, Dr. Kaylie. He decided it was the best interest to have tubes inserted since Kyleigh continues to struggle with recurrent ear infections. The surgery is scheduled for July 22nd. We went today for the pre-op appoinment. We also saw Dr. Ulshen, her GI doctor, today in regards to her reflux. He agreed that her reflux is severe but is glad to see that according to her records at Duke she is gaining weight. She is well below the growth curve chart in weight;however, she is continuing to climb on her own curve and following her own growth path. This is encouraging. He said to watch for signs of dehydration if she has too many episodes of refusing to eat but that hopefully this will pass as she has had some good days for feeding recently. He increased her Baclofen meds to assist in calming the reflux. We began the gradual increase of the meds today. It was a long day on the road to and from Duke but she was a trooper. The exhausting day caught up with her and the crankiness set in this evening. But after a nice bath and pj's she settled in and finally fell into a good sleep. I'm praying this increase of medicine will not have any adverse side effects such as "floppiness" as the doctor described or "excessive sleepiness/drowsiness", rather I hope and pray that it will decrease her reflux episodes to zero or close enough that she can go through a day pain free with eating.

4th of July Outfits and Kaitlyn's Tomato Garden

I have a red tomato!
It is so cool and it is mine!
See mom!
I'm just chillin' in my flag onesie!
I'm so cute!
Kaitlyn and her daddy planted a flower and tomato garden in April. Today she was able to pick her first red tomato from the vine. She was so proud and keeps asking when she can eat it! The girls both had on spirit wear for the day. Kaitlyn's happens to be last years dress with capris added since the length has shortened. Kyleigh began the day wearing a dress that was a little too big so we switched over to this cute onesie given to her by Heather with a small embroidered flag. So cute! Kaitlyn and her daddy went to a family cook out and then on to Creekside park for some 4th of July fireworks and festivities while Kyleigh and myself hung out at home. Kyleigh has been running a fever most of the day (probably due to shots yesterday or even teething but we stayed in to give her time to rest). It was nice to be able to clean the house without interruptions although I did miss seeing everyone. Enjoy the pics!

6 month check up

Weight- 10 lb 9 oz

Length- 25 1/4 in long

Head Circumference - 39.9 cm

They are pleased with her length and head circumference growth but concerned that her weight has plateaued out. She has always been below the growth chart curve but she was following her own curve at a nice rate. Now she is not doing that plus the recent refusal for eating hasn't helped. They are concerned about the "black" stringy stuff in her poop this week. They want me to get a sample from her diaper and bring it in on a culture swab. They want to check to see if it is blood or infection. There is a chance that with all of the antibiotics she has been on that the good flora of her tummy was killed and the bad stuff is taking over. Her last diaper showed a normal looking poo but smelled really bad. I hope to get sample into the doctor tomorrow morning, otherwise it may be Monday before we know anything. They have also put a call into Duke ENT and requested her tube surgery be put high priority rather than wait until she is 10 months or one year of age. We go see the ENT on Tuesday so I guess we will have an appt for tubes made at that time.

She had her shots today too and she did very well. She cried of course but after about 20 seconds she took a deep breath and then sighed and sucked on her paci as if to say, "I'm okay". It was sweet. That's all for now.

Eye Pressure Update and Neurology Visit

We saw Dr. Freedman on Wednesday morning for a re-check to Kyleigh's eye pressure. It has come down from a dangerous 40 to a nice 22. We would ideally like it in the low teens but we will take a 22 in a heartbeat compared to the 40 from last week. This means for now we continue the eyedrops (Azopt and Timilol) and postpone the surgical procedure--YIPPEEE!!!! Such awesome news!

Then it was off to the neurologist visit which was less than impressive. I left more confused and with more questions than when the visit began. He confirmed that her trunk is low tone and her arms/legs are high tone. However, he didn't want to do an MRI to check for reasons behind the tone change. He also seemed to not believe me when I explained the "startle" reflex that she has maintained even though she is 6 months old. He clapped his hands really loudly and assuming that since she didn't startle he says she is fine. I tried to explain that it wasn't based on sound but more on movement and it was often just sporadic spasticity of her muscles. Basically, he said he would order more genetic testing but at this point he couldn't foresee being able to help us. He gave me his card and said to call if we had more concerns or felt she was seizuring. Huh???!!! So basically, we still know nothing. "Nice"! (I'm being sarcastic you just can't hear it in my voice inflection through typed words).

Anyways, we go for a 6 month check up and shots on Friday. I plan to ask many questions on this day. Including the fact I have been in constant contact with her GI doc and nurses due to her recent refusal to eat. She finally took some bottles today but she still is well below her normal intake and is having weird poops. (Okay so maybe that is TMI but this blog is to keep you informed and you can't say I didn't tell you everything :)

More to come later---