Well, we decided to go today and get the lab work drawn. Jacob went with me to the hospital. He is a great help! After we got Liz home and fed, the kids and I went to Wal-Mart for camp supplies. It seems that every cart we get at WM has a bum wheel. It took both Jacob and I to steer the cart without plowing into anything. Later we went to McDonald's and then to the Car Wash. What fun! The girls wiped the back of the van's interior and Bubba did the front while I vaccuumed. Then we went through the automatic car wash, which proved to be very entertaining to the girls. Elizabeth and I took a nap together this afternoon. We are getting pretty good at that!

Gripe. Slap. Scream. Tattle. Repeat. That is what today sounds like. Summer is here for the Ross Family!

We are getting ready for Camp today. LizBeth has to go to the lab later this afternoon and have some blood drawn. Her doctor wants to check her red blood count to see if it's necessary to continue the iron. Lizzie, as Sarah calls her, has been awake all day. Right now she is cuddling with her daddy. I'm thinking that after we return from the lab, Katelyn, Sarah, Bubba and me are going for sno cones. That just sounds good today!

If you will notice my new picture, you will see our family's freaky genetic trait. That's my brother's giant feet along with all three Ross Girls. One of my favorite aunts called our big feet, "The Edington Curse." (She's an aunt by marriage, obviously!)

We were all able to go to church on Sunday! And we were so close to being on time! We were just close enough to being late to make the pastor ancy. Elizabeth's monitor only went off once and it was a monitor error. She stayed awake almost the entire service.

Yesterday, the girls and I went to Wichita to meet my mom and brother. It was another Griswald trip. The restaurant we usually meet at was being torn down. So my mom and I drove around and around and around Wichita until we finally reached the Best Western restaurant. When we went in, the waitress directed us to a reception for Veterans. After we followed the maze to the reception hall and back to the restaurant, we were finally ready to eat. Then the girls and I took Jacob and we are going to keep him for the next two weeks. (We may not give him back either!)

Next week is Church Camp and everyone but LizBeth and me are going. We are planning on lounging around and taking it easy. LizBeth has PT tomorrow. We are praying that she will wake up and do her tricks for them.

We had Stacy's Birthday Party last night. The girls bought him a cheesecake with all the different varieities in it. We decorated and put candles on it. I talked them into getting the numbers three and six instead of 36 candles. We all went to the kitchen to sing Happy Birthday and watch him blow out the candles. LizBeth came too.

I've been working in the garage today. How do we accumulate so much stuff? We have so many things out there. When it's all clean, the girls and I are going to start scrapbooking. I think it will be lots of fun.

Well, so far Elizabeth has eaten carrots and peas. The girls were horrified that I was making her eat peas. Katelyn said they are round and disgusting. "Bleck!" Sarah reaffirmed what her sister said and added a gagging sound when she saw they were all squished. LizBeth seemed to like them.

LizBeth's had some really good days lately. We are planning on going to church tomorrow morning. I hope we can make it on time!

Guess who ate carrots today?

She did very well this morning. Smacked her lips and everything. She was very entertaining for Katelyn and Sarah too.

The last few days have been rough on LizBeth. The weekend was long and tiring. Monday was a four hour drive and a dr. appt. Tuesday she had three immunization shots and Wednesday was PT. Whew... so last night LizBeth didn't look or act like she felt too good. She cried all through PT and fussed up until bedtime. But today she is back to her old self. Happy and hungry and playful!

Today was my big girls last day of school. I went with Katelyn's class to Sonic for lunch. It was so much fun. Katelyn came home from school in tears b/c she would miss all her "first-grade friends." She wouldn't get to see them for a long time. Sarah came home and shouted, "No-School-Day tomorrow! Or the day after that! Ha!" Can you guess which one is like Stacy?

National Lampoons: The Griswalds Go To Oklahoma City

What a trip! Elizabeth began having trouble breathing Saturday night. We suctioned continuously. Sunday morning she felt much better. So we left that afternoon and got as far as Woodward, which is our halfway point, and did a trach change in a gas station parking lot. (Stacy is pretty agile for an old guy!) The stuff in LizBeth's trach was like glue, so she couldn't cough it up and we couldn't suction it out. The rest of the trip was uneventful until we reached our hotel. While Stacy was sliding the key in the door, footsteps could be heard on the other side. Yep, we were trying to enter an occupied room. So we go downstairs and get the key to OUR room. The room was nice and we unpacked. It was calm with the Griswalds for a while. Then I decided to feed the bed that night. You see, LizBeth is on a continuous feed at night. It's just a slow drip all night long. However, this time it was for the Best Western Hide-a-Bed. That bed was full! The pulse ox false alarmed all night long for me. At about 8:00 am, LizBeth became rather angry. That's when we noticed the bed. We fed her, then bathed her. Somehow, while bathing her, I managed to get her clean clothes wet... front and back. Once dressed, I realized we had no other outfits. So, Elizabeth was dried by the hair dryer. Funny thing is she liked it. It was during this time I realized that Stacy and I were handling things rather well. If LizBeth had been Daughter #1, I would have thought myself a terrible Mom. But since she's #3, I'm pretty proud of myself for thinking to dry her with the hair dryer!
The Doctor's Appt. went well. We are scheduled for decannulation on June 16th. Decannulation is the technical term for getting the trach removed. Whoo-Hoo! The procedure will go something like this: The dr. will take her to surgery. She will be given a valium to help her sleep. Then the dr. will perform the lower bronchoscopy (looking down the trach) and the upper bronch (looking up her nose). If he sees no obstructions, he will take the trach out and watch her for about 20 minutes. If she is not panicking and gasping for air, he will cover the trach opening and send her to the observation unit. We will stay in the hospital for two nights b/c if problems present, they usually do so within the first 48 hours. If her airway is obstructed or LizBeth has breathing difficulties, we will meet with a surgeon and the decann will be prolonged. We think she's going to do great! Please pray for this procedure and her ability to maintain her airway. Thank you for all your prayers!

The last few days have been much calmer. Sarah did so good in her graduation! They all did!
LizBeth is doing well. In the hospital, we were told that we might come across a trach that Elizabeth didn't do well with it. If that should happen, change the trach and throw that other one away. Well, we found one this past week. Tuesday, after the trach change on Monday, you could tell something wasn't right. We suctioned her, burped her and changed her position. Finally, we just changed the trachs out. Lo and behold, by that afternoon she was pink and happy!

We are leaving tomorrow afternoon for the City. Our appt. is at 12:45 on Monday with the Pulm. Please pray for her upper airway to open and our travel safety. Thank you!

I finally have time to update! Elizabeth had a dr. appt. here in Guymon on Tuesday. He said she was doing really well. We are going to continue the iron for a couple of months. The appt. for Monday is still set. We are still praying for her upper airway to open.

Wednesday was all day Kindergarten Graduation practice. They are so excited and ready for the practices to be over! Tonight is Graduation. This means Elizabeth has been having a lot of Daddy Time. Like she wasn't already a Daddy's Girl...

Right now LizBeth is sitting in the rocking chair like a big girl looking around. Her neck strength is improving daily. Whoo-Hoo! Well, I'm off to the school for one last practice!

Today was trach change day. Elizabeth does so well during that. She's been pretty sleepy today, but held her head up for a full five seconds. Whoo-Hoo! Today Stacy was holding LizBeth up on his chest and she was looking at him and smiling. She would look at me and I would bribe her to come to me. The little toot would look back at her daddy and silently laugh. Once it looked a lot like she rolled her eyes! As you can imagine, he ate that up. I rolled my eyes...

The dreaded meeting went well. It was a meeting for medical assistance to help maintain Elizabeth's level of care at home. It was very easy and painless. God is in control of everything. PT went well. She slept through most of it. However, she woke up long enough to take her bottle and hold her head up. The PT had some really good ideas. So we are implementing them. LizBeth doesn't seem to mind. Tomorrow we meet with her doctor at 2:00 for a checkup.

While calling about a medical bill today, in a huge roundabout way, I was able to talk to LizBeth's doctor from the Texas NICU. He remembered LizBeth and asked how she was doing and if she was growing. He was happy to hear how well she was doing. You know we have been so blessed to have awesome doctors and nurses all throughout Elizabeth's Escapade, but some of them have just gone above and beyond. We have been so blessed by God in every area! He is so good!

We've had two more great days. Elizabeth is taking her bottle about every two hours and drinking 40-60 ccs. At night we go ahead and tube feed her. She is awake so much. I think she's afraid she might miss something! We are still treating the thrush, but it's improving.
Elizabeth and I are going to join the family at church tonight. I thought that would be the best Mother's Day gift. We are having a guest preacher, so the whole family will get to sit together. I am so excited! This will bet the first time Elizabeth and I have been to church since January.

As most of you know, Elizabeth has not had a single apnea since we've been home. She quit having bradys about three weeks ago. And now, she hasn't had a desat in one week. One whole week! God is so good! Right now LizBeth is laying on her pallet in the floor "talking" to her bear. Or maybe she's trying to eat it. Who knows!?

Katelyn, Sarah and Elizabeth bought me two Mother's Day gifts: a dozen colored roses and a floor lamp that glows rainbow colors and plays music. The roses are on the kitchen table and MY lamp is in Katelyn and Sarah's room. The reason for this: I just don't have room in my room, so they will keep it their room for me. They are so kind! Kids are great! God has blessed us tremendously!

Please continue to pray for LizBeth's upper airway to open on its own. And pray for the meeting Monday. I'm pretty sure it's not about the insurance but about another program we were encouraged to apply for. Thank you for all your prayers thus far.
2Co 1:11 He will rescue us because you are helping by praying for us. As a result, many will give thanks to God because so many people's prayers for our safety have been answered.

Whoo-Hoo! We got some really good check-ups this week!
Genetics: The doctor told us she had no other tests to run. Elizabeth was obviously improving. The only reason for more tests would be in the event we had other children. We told her that more tests would not be necessary based on that reason! Elizabeth's journey through the NICUs had solidified her place as the baby. She said she would like to see her with more head and trunk control, so to continue with PT. We do not meet with her again for six months.
Surgery: We have been dismissed from the surgeon. He said her g-button site and fundo scar looked great. He asked LizBeth what she was hiding in her cheeks! And asked us what we were doing nutritionally as far as feedings. We explained that she was taking 100 ccs every 3 1/2 - 4 hours; and doing better with her bottle. The doctor told us we could stop tube feedings during the day for a couple of days and see how she did with the bottle only. Leave her night routine the same for now, and just practice during the day.
Neurology: Our most dreaded appt. turned out to be the most encouraging! The doctor told us LizBeth was much better. She had great limb tone and was improving in her trunk. She said her trunk and neck control would just take some time. She told us that there was no reason for her to run other tests either. If Elizabeth had a disorder, it was very slight or she was just out growing something.
THE GENETICIST GOT OUR PULM. APPT. MOVED UP TO MONDAY, MAY 19TH!!!
This doctor will have the final say on the trach removal. Please pray that LizBeth's upper airway will open. The bronch she had done in March showed it had collapsed, so we are praying for God to open it. This way she can avoid anesthesia b/c they will have to sedate her to blow up her airway and seeing if she can maintain it.
Elizabeth performed all her tricks: trying to turn over, eating her hands, kicking her feet and looking all around. She had a little trouble in the car seat on the way to OKC. Apparently, when the Princess wants out of her car seat, she wants out NOW! We made several stops for her to stretch and look around. She was pretty wiped out on the way home yesterday.
Her Bactrim will be finished tonight. We have started her Niastatin today!

Please pray for a meeting we have on Monday with our local DHS office. They are requesting a face to face interview to discuss Elizabeth's eligibility for Medicaid. I'm not sure why this letter is arriving now. The other two girls are on it and Elizabeth has been since her birth. Anyway, I'm nervous about it, but trying not to be. After all God has done for us, I'm rather disappointed in myself. Whatever happens, He is in control. That has been a lesson learned. But boy do old habits die hard!

Tomorrow we leave for Oklahoma City. We are planning on leaving around noon. Katelyn and Sarah get to spend the night with some friends. They are so excited. Wednesday, Papa and Nana are coming to take care of the girls. They are pros at this! We meet with the Genetist at 9:45 and the Neurologist at 11:00 on Wednesday. We meet with the surgeon at 1:00 on Thursday. Then we'll head back home. You can never tell how LizBeth will ride in the car. Sometimes she likes it; sometimes she doesn't.

Today was another good day. Both girls came home early from school. They were "sick." I think they were just tired because after a long nap, they both felt so much better!

Elizabeth is swinging in her swing now. She likes it.. for the moment. I'm afraid she's developed an allergic reaction to her bed. When we lay her down, her eyes pop open! Then if she thinks she's all alone, she begins to cry. We heard her cry this morning!!! Stacy was praying in the living room and I had went back to bed, when I heard a baby crying. I thought I was dreaming! Then I realized I was awake and ran in to see what was going on. As soon as Stacy picked her up, she quit. But it was so sweet to hear her cry. (They had told us in the hospital that this could happen.)

Stacy and the girls went to church and enjoyed both services. Sarah is always concerned whether or not the services will be long or short. She will ask various members of our church how long her daddy will preach. The ususal answer is long. To that response she sighs and says she knew it would be.

Wow! This has been a great day! Elizabeth had the hiccups twice for me with no desat following. Whoo-Hoo! This is day #2 for her antibiotics and already her secretions are back to normal. When she's getting a trach site infection, you can smell it. Pretty gross, huh? Well, no more "garbagy" smell this evening. We still have five more days to go on the Bactrim, but she tolerates it well. (And just in case thrush wants to come back, we have a whole bottle of Niastatin and four more refills!)

Stacy and the girls went to the parade this morning and came back with a huge bag of candy. This afternoon they went to the carnival and came back with sunburns. Here are some carnival pics:

Sarah did not care for the Ferris Wheel. She decided to watch from the ground with our neighbor.

Katelyn and Stacy were so brave! Katelyn will ride anything.

See this little roller coaster called The Dragon. In the past Stacy and I have had to ride with the girls. Talk about a tight fit. We didn't know our legs would bend like that! This year, they rode all by themselves.

Katelyn really wants LizBeth to turn over, so today she was her Cheerleader. "Come on LizBeth, you can do it. Put a little power to it!" LizBeth would try, and in doing so would swing her arms around and pop Katelyn in the face. So Katelyn started making Karate sounds and I began singing that song about everybody Kung Fu fighting. It was truly a Precious Moment! Just glad Stacy wasn't around to capture it on film. We enjoyed ourselves though. (Sarah was napping, so she didn't join in on the festivities.)

It is windy! Not just regular Guymon windy, but hurricane force windy. (without the moisture) Elizabeth is having a good day. She's pretty sleepy, but so is Stacy. Evidently they had constant machine errors until 3:00 am last night.

Stacy, Katelyn and Sarah are trying to tear the living room apart. The sounds of whining and laughing and screaming can only mean one thing... Wrestlemania! Elizabeth and I just try to stay out of it.