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.