Kaitlyn's Big Day

Today was Kaitlyn's first day at PreK in the "big" school. She went to work with her daddy. Her teacher's name is Ms. Caraway. She is in the PreK classroom at Shadybrook She was so excited to begin her big day and very proud of her bookbag that Kristen had given her for Christmas last year with her name on it. She is standing on the steps outside of the PreK trailer.
She is so excited to be in her room and ready to meet new friends!
Today she took a tour of the entire school. She played in learning centers where she painted on the easel and had a great time. They even listened to the story "The Gingerbread Man" and Kaitlyn must have loved it as she talked about it as soon as she saw me. She said they sang and ran as fast as they could just like the gingerbread boy. So cute!

My little girl even ate lunch in the big cafeteria and carried her own tray. Ms. Caraway said that she rested well and even got to visit the treasure box at the end of the day. All in all it was a great success!! Yeah Kaitlyn!!! We are so proud of you!!!

Kyleigh and Kaitlyn update

The summer is over and I'm sad to see it go. I had a wonderful time home with my girls for the past 6 or so weeks despite the much traveling that occurred back and forth to hospitals and doctors. We managed to still enjoy some time at the pool, museums, library, beach and home with our girls. I am in disbelief that my little Kaitlyn begins pre-K at public school in a few short days from now. She is growing up so fast right before my eyes. She even acts like a grown little lady at times. We had her open house tonight and she was excited to see her teacher again but reserved when it came to meeting new friends.

Kyleigh had an eventful weekend that included more bleeding from the left ear. We ended up in the pediatrician office on Sunday morning just one week since the last visit. We saw Dr. O'Kelley our pediatrician and he said he felt sure that the tube had come out of her ear and caused lacerations of the ear canal when it came out. He cleaned her ear and inserted some Neosporin and told me to do the same if it started bleeding again but that it should heal itself and to stop the ear drops. Monday morning it had bled again through the night because she managed to get her mittens off and get her little finger in the ear and scratch. I'm sure it was itching as wounds often itch as they heal. Now if only we can keep her from trying to scratch until it completely heals. We have an appt on the 31st of August with the ENT so I guess we will find out then when they plan to replace the missing tube.

She has lost a few ounces since becoming sick with the most recent ear infection. Although some days her appetite is great she is still lagging behind where she needs to be. A week ago she weighed 13 lbs 0 oz and on Sunday she was 12 lbs 7 oz. However, she made up for it by eating a lot today (sweet potatoes, peaches, cereal and 3 bottles) that is a lot for her. She was happy today and very curious about the new babies at school today since it was the first day of the new year at daycare. She took only 2 short naps. So tonight she gladly took her final bottle after the bath and snuggled into bed. I hope this is a sign to come that she will be happy at her daycare and rest well each night. I missed her terribly today though but enjoyed my time with her this evening.

The most recent doctor visit also led to the discussion of how we should still treat her as a "newborn" with our handwashing techniques. Any person coming in contact with Kyleigh and planning to touch or hold her, feed her, etc should sanitize or wash their hands first. The pediatrician is very concerned about her susceptibility to the H1N1 virus and other common winter illnesses that for most children would just be plain icky but for Kyleigh could lead to set backs in her weight gain and overall health. However, we are just going to pray that God puts protection over her right now and keeps both her and Kaitlyn healthy this winter.

Well, it is time for myself and Dennis to get some much needed rest tonight as we prepare for the opening of school tomorrow with children.

My Girls...

Kristen and I went for a much needed pedicure last night to get ready for open house this week. We took Kaitlyn along with us to have a "date" and get her nails polished. It turned out that the nail salon in Friendly Center beside of Cold Stone has kid spa chairs with DVD players. I didn't get her a full pedicure but they did paint her toes and fingers the pretty sherbert orange color that she picked out herself and as a bonus added little flower designs. Soooo cute!!! As you can tell she was grinning from ear to ear the entire time up until she fell fast asleep in her bed. It was a great experience watching her take pride in her newly painted nails and be a "big" girl out with mommy.

Kyleigh also had a busy day as she learned to sit up unassisted for the first time for 10 minutes. I am so proud of her. She is now 13 lbs and wearing 6-9 month sleepers because of the length. Her other clothes are still 3-6 months. She is mostly a happy baby and has learned to squeal and loves to hear herself squeal out loud.

It is great to be a mom to such sweet and beautiful girls.

Another Ear Infection

Kyleigh seemed a little on the fussy side Saturday night but Sunday morning it was obvious that something was wrong. She was in pain and she was planning to cry loud and hard enough until we fixed it. Bless her heart. So of course I called Greensboro Peds and we went to see Dr. Alexander. Her tube in the left ear was still clotted (no surprise there) and there was infection building up behind the ear drum causing obvious pain. Dr. Alexander felt it was necessary to try and unblock the clot using a small amount of peroxide (.5 mL) in the ear. Then she inserted a wick (small piece of expandable foam) in her ear. She said this would allow ear drops to travel into the ear drum instead of leaking out. The peroxide worked and loosened up some of the clot as was evidence by the blood on the wick when it came out around noon. She also prescribed her an antibiotic Omnicef to take once a day. She wants to see her in the office again on Tuesday or Wednesday to recheck the ear and make sure we are making progress on clearing up the infection. Our ENT is out of town and we will not see him until Sept 14th so Dr. Alexander felt it important that Greensboro Peds follow her until then. Since the doctor's appointment this morning she has been a happier baby. She has even played and smiled again. I am so looking forward to the day that she never has to fight an ear infection again.

A mini get away---

Here are some of my favorite pictures from our mini get away this weekend to Myrtle Beach. Unfortunately you won't see Kyleigh in these pics this time as we thought it best to let her stay with mawmaw and pawpaw so she could be closer to her doctors if needed. Kaitlyn really enjoyed the extra special mommy and daddy time she received.

Kaitlyn and Mommy outside of the Aquarium -- I love this place!
"I wonder how far the ocean goes"---hmmm
Don't drop me daddy...I won't...here comes a small wave..get ready!
I'll be right back daddy...gotta have more water for the castle
Let's build it together okay dad

Kyleigh's Eye Update

Today was the last appointment at Duke for this week. We saw the eye doctor. Dr. Freedman was pleased to tell me that her corneas appeared clearer and her pressure was remaining at a normal level in both eyes. She agreed that Kyleigh had outgrown her frames and needed new glasses. She also changed her prescription to a lower strength indicating that her eyes are improving. Of course the right eye has a greater prescription strength need because it is the weaker of the two eyes for Kyleigh. After the appointment I took the Rx to the Optical shop to have her new frames ordered. Because the Rx was being changed we needed to re-order her glasses completely and it gave us the choice of 2 different frames. However, the price of both were the same- over $200 a pair and there is no telling how long they will last her considering the last pair was less than 6 months of wearing time. The optician suggested I speak with the doctor's office to see if they could set me up on a payment plan or help us somehow with the expense because insurance will not cover the cost. As it turns out we were extremely blessed today by Dr. Freedman and her office. The Duke Peds has sponsored Kyleigh for one pair of glasses for free!!!!! Yes, completely FREE!!!! We went seeking help with payments and we got a gift that was overabundant. My eyes filled with tears with the love shown to our baby girl. I can't begin to express my gratitude to Dr. Freedman for looking out for the best for my baby. Such a caring and wonderful doctor and office. So blessed!!

We will go back in 6-8 weeks for a check-up and until then we can expect her glasses to arrive in the UPS within the next 2 weeks.

Cleft Palate Surgery is On Hold--

We went today for the cleft palate team review. The appointment began with a survey of her medical history and current medications. Then we met with the social worker at Duke that proceeded to explain how if the social worker at Womens' had followed through prior to our discharge we could have had SSI and Medicaid from the beginning no questions asked. However, now that she is in the care of us (her parents) we have to apply for the programs and pray we are accepted rather than denied coverage. That infuriates me to say the least but I can't change that now. All I can do is go on Friday and apply in person at the local SSI office. Then we met with the speech department that has followed her feedings up through now. She reiterated the importance of getting rid of the pacifier months prior to surgery. She reminded us that her arms would have "no-no's" or restrictive bands to prevent her from putting her hands or objects in her mouth. The first night after surgery she will not tolerate much but will need to drink from a cup (can be small sips from a medicine cup). Nevertheless, she gave us the good news of that she can have her bottle back the next day as long as the pigeon valve is in the nipple preventing her from getting a full suction. Then we met wiht the ENT that confirmed her tube is still clogged and he will need to replace the tube at some point. Until then, for the next two weeks we are to continue ear drops.

After a lunch break we met with Dr. Georgiade, the surgeon, to review the cleft palate surgery. He was not pleased with her overall growth to this point. He explained the surgery and discussed the risks involved in surgery. He was hoping that by 8 months (or soon to be 8 months of age) she would be much bigger. He never gave a weight goal or percentage but indicated that her small size made the surgery a risk for her. So he is asking our pediatrician to offer up a suggested date of when she may be ready for surgery and then he plans to buffer that time by adding on a few more months. He said that although typically the surgery is completed by 10-12 months of age it may be that Kyleigh's surgery is going to be between 12-16 months or longer if needed.

I was actually relieved to get this information. Although I know repairing her cleft palate may make eating an easier task in the long run I agree that she is still just so small for her age. She weighed 12 lbs 7 oz at the pediatricians' office today and for a 7 month old that is just tiny! So for now, the surgery is on hold and we are waiting for the doctors' to contact us with a date that they feel is appropriate.

ENT Update and the week ahead

Today was the first of many appointments this week at Duke for Kyleigh. The morning started out very stressful as I was running behind schedule with getting myself and the girls ready and on the road. However, we made it to Duke on time but spent 10 minutes searching for a spot in the parking garage----grrrr. Anyways, we were late to the appointment but luckily they took us on back anyways. She saw the ENT doctor today because we ended up on oral antibiotics and new ear drops from the pediatrician due to an ear infection in the left ear. Dr. Kaylie (ENT) wanted to recheck her ear today. The right ear still looks picture perfect. The left ear is no longer infected but still has a blood clot blocking the tube from functioning properly. We are to continue the ear drops in hopes that it will help release the blood clot. However, Dr. Kaylie is prepared that we may have to replace this tube in the near future. He said it can be done at the same time as her cleft palate repair but that could mean more ear infections until then. Otherwise we would have to do another round of anesthesia separate and they frown upon having to put her under too many times unless absolutely necessary. Since we return on Wednesday to Duke for the Cleft Palate Review team to set a date for surgery and he serves on this team, a decision will be made as to whether a separate surgical procedure is necessary of if it can wait until cleft palate repair. Wednesday is the long day of appointments as each specialists that has a role in her recovery and surgery will be present to review her progress and growth on this day. We report to Duke at 8:45 am and will be there most of the day. Then we return on Thursday for her to have her eyes rechecked to make sure the new eye drop is continuing to maintain her pressure at an appropriate level.

Needless to say this is a stressful week. I am so thankful it is still summer break and I am not having to deal with working and appointments at the same time. However, it doesn't change the fact that we are spending more time in the car this week and at Duke than we are enjoying summer days. Today I met a stranger while at Duke that helped make the stress of today melt away. Her name is Marie and she was just an ordinary lady there for a follow-up at Duke and was using the restroom at the same time we were. However, she could sense the stress level I was under evidently with 2 small children and she offered to help Kaitlyn wash her hands. Before that another lady gave up her spot in line to allow Kaitlyn to potty first (how sweet was that!). Then Marie not only helped Kaitlyn wash her hands but she also offered to help me to the car because she was heading to the parking garage anyways and she said it looked like I could use another pair of hands to push the stroller. I wasn't weirded out by her offer as I usually would have been. Instead I graciously accepted the offer at this point and we talked to the car about her being a teacher and mother. She was so nice. She asked where we lived and then offered to give us a place to rest if we needed on our many trips back and forth to Duke. She proceeded to write down her contact information and told me she was serious about the offer and wanted me to know that she just felt strongly it was the right thing to do today. How awesome was that. It was as if God sent me a little piece of happiness in the form of a stranger to help lighten my load. Sometimes I think I'm super woman and I can handle it all by myself. Today, I was handling it just fine I thought but it was so nice to have a moment of help from a complete stranger. There are still nice people in this world.

Please continue to keep Kyleigh in your prayers.